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1.  Social and Self-Reflective Use of a Web-Based Personally Controlled Health Management System 
Background
Personally controlled health management systems (PCHMSs) contain a bundle of features to help patients and consumers manage their health. However, it is unclear how consumers actually use a PCHMS in their everyday settings.
Objective
To conduct an empirical analysis of how consumers used the social (forum and poll) and self-reflective (diary and personal health record [PHR]) features of a Web-based PCHMS designed to support their physical and emotional well-being.
Methods
A single-group pre/post-test online prospective study was conducted to measure use of a Web-based PCHMS for physical and emotional well-being needs during a university academic semester. The PCHMS integrated an untethered PHR with social forums, polls, a diary, and online messaging links with a health service provider. Well-being journeys additionally provided information to encourage engagement with clinicians and health services. A total of 1985 students and staff aged 18 and above with access to the Internet were recruited online, of which 709 were eligible for analysis. Participants’ self-reported well-being, health status, health service utilization, and help-seeking behaviors were compared using chi-square, McNemar’s test, and Student’s t test. Social networks were constructed to examine the online forum communication patterns among consumers and clinicians.
Results
The two PCHMS features that were used most frequently and considered most useful and engaging were the social features (ie, the poll and forum). More than 30% (213/709) of participants who sought well-being assistance during the study indicated that other people had influenced their decision to seek help (54.4%, 386/709 sought assistance for physical well-being; 31.7%, 225/709 for emotional well-being). Although the prevalence of using a self-reflective feature (diary or PHR) was not as high (diary: 8.6%, 61/709; PHR: 15.0%, 106/709), the proportion of participants who visited a health care professional during the study was more than 20% greater in the group that did use a self-reflective feature (diary: P=.03; PHR: P<.001).
Conclusions
There was variation in the degree to which consumers used social and self-reflective PCHMS features but both were significantly associated with increased help-seeking behaviors and health service utilization. A PCHMS should combine both self-reflective as well as socially driven components to most effectively influence consumers’ help-seeking behaviors.
doi:10.2196/jmir.2682
PMCID: PMC3785989  PMID: 24064188
personal health record; social networks; Internet intervention; health service; help-seeking; emotional well-being; physical well-being; preventative health; eHealth; consumer; university
2.  Integrated Personal Health Records: Transformative Tools for Consumer-Centric Care 
Background
Integrated personal health records (PHRs) offer significant potential to stimulate transformational changes in health care delivery and self-care by patients. In 2006, an invitational roundtable sponsored by Kaiser Permanente Institute, the American Medical Informatics Association, and the Agency for Healthcare Research and Quality was held to identify the transformative potential of PHRs, as well as barriers to realizing this potential and a framework for action to move them closer to the health care mainstream. This paper highlights and builds on the insights shared during the roundtable.
Discussion
While there is a spectrum of dominant PHR models, (standalone, tethered, integrated), the authors state that only the integrated model has true transformative potential to strengthen consumers' ability to manage their own health care. Integrated PHRs improve the quality, completeness, depth, and accessibility of health information provided by patients; enable facile communication between patients and providers; provide access to health knowledge for patients; ensure portability of medical records and other personal health information; and incorporate auto-population of content. Numerous factors impede widespread adoption of integrated PHRs: obstacles in the health care system/culture; issues of consumer confidence and trust; lack of technical standards for interoperability; lack of HIT infrastructure; the digital divide; uncertain value realization/ROI; and uncertain market demand. Recent efforts have led to progress on standards for integrated PHRs, and government agencies and private companies are offering different models to consumers, but substantial obstacles remain to be addressed. Immediate steps to advance integrated PHRs should include sharing existing knowledge and expanding knowledge about them, building on existing efforts, and continuing dialogue among public and private sector stakeholders.
Summary
Integrated PHRs promote active, ongoing patient collaboration in care delivery and decision making. With some exceptions, however, the integrated PHR model is still a theoretical framework for consumer-centric health care. The authors pose questions that need to be answered so that the field can move forward to realize the potential of integrated PHRs. How can integrated PHRs be moved from concept to practical application? Would a coordinating body expedite this progress? How can existing initiatives and policy levers serve as catalysts to advance integrated PHRs?
doi:10.1186/1472-6947-8-45
PMCID: PMC2596104  PMID: 18837999
3.  The anxious wait: assessing the impact of patient accessible EHRs for breast cancer patients 
Background
Personal health records (PHRs) provide patients with access to personal health information (PHI) and targeted education. The use of PHRs has the potential to improve a wide range of outcomes, including empowering patients to be more active participants in their care. There are a number of widespread barriers to adoption, including privacy and security considerations. In addition, there are clinical concerns that patients could become anxious or distressed when accessing complex medical information. This study assesses the implementation of a PHR, and its impact on anxiety levels and perceptions of self-efficacy in a sample of breast cancer patients.
Methods
A quasi-experimental pre-test/post-test design was used to collect data from participants to evaluate the use of the PHR. Study participants completed background and pre-assessment questionnaires and were then registered into the portal. By entering an activation key, participants were then able to review their lab results and diagnostic imaging reports. After six weeks, participants completed post-assessment questionnaires and usability heuristics. All data were collected using an online survey tool. Data were cleaned and analyzed using SAS v9.1.
Results
A total of 311 breast cancer patients completed demographic and pre-assessment questionnaires, 250 registered to use the online intervention, and 125 participants completed all required study elements. Matching the pre- and post-anxiety scores demonstrated a decrease in mean anxiety scores (-2.2, p = 0.03); the chemotherapy sub-group had a statistically insignificant mean increase (1.8, p = .14). There was no mean change in self-efficacy scores.
Conclusions
Participants generally found the portal easy to use; however, the perceived value of improved participation was not detected in the self-efficacy scores. Having access to personal health information did not increase anxiety levels. While these results suggest that the use of this PHR may be of benefit for informing patients, further research is required to investigate the impact on the patients experiences, their participation in their care, their relationships with the health care team, and their health outcomes.
doi:10.1186/1472-6947-10-46
PMCID: PMC2940864  PMID: 20809950
4.  Women's Access and Provider Practices for the Case Management of Malaria during Pregnancy: A Systematic Review and Meta-Analysis 
PLoS Medicine  2014;11(8):e1001688.
Jenny Hill and colleagues conduct a systematic review and meta-analysis of women’s access and healthcare provider adherence to WHO case-management policy of malaria during pregnancy.
Please see later in the article for the Editors' Summary
Background
WHO recommends prompt diagnosis and quinine plus clindamycin for treatment of uncomplicated malaria in the first trimester and artemisinin-based combination therapies in subsequent trimesters. We undertook a systematic review of women's access to and healthcare provider adherence to WHO case management policy for malaria in pregnant women.
Methods and Findings
We searched the Malaria in Pregnancy Library, the Global Health Database, and the International Network for the Rational Use of Drugs Bibliography from 1 January 2006 to 3 April 2014, without language restriction. Data were appraised for quality and content. Frequencies of women's and healthcare providers' practices were explored using narrative synthesis and random effect meta-analysis. Barriers to women's access and providers' adherence to policy were explored by content analysis using NVivo. Determinants of women's access and providers' case management practices were extracted and compared across studies. We did not perform a meta-ethnography. Thirty-seven studies were included, conducted in Africa (30), Asia (4), Yemen (1), and Brazil (2). One- to three-quarters of women reported malaria episodes during pregnancy, of whom treatment was sought by >85%. Barriers to access among women included poor knowledge of drug safety, prohibitive costs, and self-treatment practices, used by 5%–40% of women. Determinants of women's treatment-seeking behaviour were education and previous experience of miscarriage and antenatal care. Healthcare provider reliance on clinical diagnosis and poor adherence to treatment policy, especially in first versus other trimesters (28%, 95% CI 14%–47%, versus 72%, 95% CI 39%–91%, p = 0.02), was consistently reported. Prescribing practices were driven by concerns over side effects and drug safety, patient preference, drug availability, and cost. Determinants of provider practices were access to training and facility type (public versus private). Findings were limited by the availability, quality, scope, and methodological inconsistencies of the included studies.
Conclusions
A systematic assessment of the extent of substandard case management practices of malaria in pregnancy is required, as well as quality improvement interventions that reach all providers administering antimalarial drugs in the community. Pregnant women need access to information on which anti-malarial drugs are safe to use at different stages of pregnancy.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
Malaria, a mosquito-borne parasite, kills about 600,000 people every year. Most of these deaths occur among young children in sub-Saharan Africa, but pregnant women and their unborn babies are also vulnerable to malaria. Infection with malaria during pregnancy can cause severe maternal anemia, miscarriages, and preterm births, and kills about 10,000 women and 100,000 children each year. Since 2006, the World Health Organization (WHO) has recommended that uncomplicated malaria (an infection that causes a fever but does not involve organ damage or severe anemia) should be treated with quinine and clindamycin if it occurs during the first trimester (first three months) of pregnancy and with an artemisinin-based combination therapy (ACT) if it occurs during the second or third trimester; ACTs should be used during the first trimester only if no other treatment is immediately available because their safety during early pregnancy has not been established. Since 2010, WHO has also recommended that clinical diagnosis of malaria should be confirmed before treatment by looking for parasites in patients' blood (parasitology).
Why Was This Study Done?
Prompt diagnosis and treatment of malaria in pregnancy in regions where malaria is always present (endemic regions) is extremely important, yet little is known about women's access to the recommended interventions for malaria in pregnancy or about healthcare providers' adherence to the WHO case management guidelines. In this systematic review and meta-analysis of qualitative, quantitative, and mixed methods studies, the researchers explore the factors that affect women's access to treatment and healthcare provider practices for case management of malaria during pregnancy. A systematic review uses predefined criteria to identify all the research on a given topic. Meta-analysis is a statistical method for combining the results of several studies. A qualitative study collects non-quantitative data such as reasons for refusing an intervention, whereas a qualitative study collects numerical data such as the proportion of a population receiving an intervention.
What Did the Researchers Do and Find?
The researchers identified 37 studies (mostly conducted in Africa) that provided data on the range of healthcare providers visited, antimalarials used, and the factors influencing the choice of healthcare provider and medicines among pregnant women seeking treatment for malaria and/or the type and quality of diagnostic and case management services offered to them by healthcare providers. The researchers explored the data in these studies using narrative synthesis (which summarizes the results from several qualitative studies) and content analysis (which identifies key themes within texts). Among the studies that provided relevant data, one-quarter to three-quarters of women reported malaria episodes during pregnancy. More than 85% of the women who reported a malaria episode during pregnancy sought some form of treatment. Barriers to access to WHO-recommended treatment among women included poor knowledge about drug safety, and the use of self-treatment practices such as taking herbal remedies. Factors that affected the treatment-seeking behavior of pregnant women (“determinants”) included prior use of antenatal care, education, and previous experience of a miscarriage. Among healthcare providers, reliance on clinical diagnosis of malaria was consistently reported, as was poor adherence to the treatment policy. Specifically, 28% and 72% of healthcare providers followed the treatment guidelines for malaria during the first and second/third trimesters of pregnancy, respectively. Finally, the researchers report that concerns over side effects and drug safety, patient preference, drug availability, and cost drove the prescribing practices of the healthcare providers, and that the determinants of provider practices included the type (cadre) of heathcare worker, access to training, and whether they were based in a public or private facility.
What Do These Findings Mean?
These findings reveal important limitations in the implementation of the WHO policy on the treatment of malaria in pregnancy across many parts of Africa and in several other malaria endemic regions. Notably, they show that women do not uniformly seek care within the formal healthcare system and suggest that, when they do seek care, they may not be given the appropriate treatment because healthcare providers frequently fail to adhere to the WHO diagnostic and treatment guidelines. Although limited by the sparseness of data and by inconsistencies in study methodologies, these findings nevertheless highlight the need for further systematic assessments of the extent of substandard case management of malaria in pregnancy in malaria endemic countries, and the need to develop interventions to improve access to and delivery of quality case management of malaria among pregnant women.
Additional Information
Please access these websites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001688.
Information is available from the World Health Organization on malaria (in several languages) and on malaria in pregnancy; the 2010 Guidelines for the Treatment of Malaria are available; the World Malaria Report 2013 provides details of the current global malaria situation
The US Centers for Disease Control and Prevention also provides information on malaria; a personal story about malaria in pregnancy is available
Information is available from the Roll Back Malaria Partnership on all aspects of global malaria control, including information on malaria in pregnancy
The Malaria in Pregnancy Consortium is undertaking research into the prevention and treatment of malaria in pregnancy and provides links to the consortium's publications and an online library on malaria in pregnancy
MedlinePlus provides links to additional information on malaria (in English and Spanish)
doi:10.1371/journal.pmed.1001688
PMCID: PMC4122360  PMID: 25093720
5.  Robotic-Assisted Minimally Invasive Surgery for Gynecologic and Urologic Oncology 
Executive Summary
Objective
An application was received to review the evidence on the ‘The Da Vinci Surgical System’ for the treatment of gynecologic malignancies (e.g. endometrial and cervical cancers). Limitations to the current standard of care include the lack of trained physicians on minimally invasive surgery and limited access to minimally invasive surgery for patients. The potential benefits of ‘The Da Vinci Surgical System’ include improved technical manipulation and physician uptake leading to increased surgeries, and treatment and management of these cancers.
The demand for robotic surgery for the treatment and management of prostate cancer has been increasing due to its alleged benefits of recovery of erectile function and urinary continence, two important factors of men’s health. The potential technical benefits of robotic surgery leading to improved patient functional outcomes are surgical precision and vision.
Clinical Need
Uterine and cervical cancers represent 5.4% (4,400 of 81,700) and 1.6% (1,300 of 81,700), respectively, of incident cases of cancer among female cancers in Canada. Uterine cancer, otherwise referred to as endometrial cancer is cancer of the lining of the uterus. The most common treatment option for endometrial cancer is removing the cancer through surgery. A surgical option is the removal of the uterus and cervix through a small incision in the abdomen using a laparoscope which is referred to as total laparoscopic hysterectomy. Risk factors that increase the risk of endometrial cancer include taking estrogen replacement therapy after menopause, being obese, early age at menarche, late age at menopause, being nulliparous, having had high-dose radiation to the pelvis, and use of tamoxifen.
Cervical cancer occurs at the lower narrow end of the uterus. There are more treatment options for cervical cancer compared to endometrial cancer, however total laparoscopic hysterectomy is also a treatment option. Risk factors that increase the risk for cervical cancer are multiple sexual partners, early sexual activity, infection with the human papillomavirus, and cigarette smoking, whereas barrier-type of contraception as a risk factor decreases the risk of cervical cancer.
Prostate cancer is ranked first in men in Canada in terms of the number of new cases among all male cancers (25,500 of 89,300 or 28.6%). The impact on men who develop prostate cancer is substantial given the potential for erectile dysfunction and urinary incontinence. Prostate cancer arises within the prostate gland, which resides in the male reproductive system and near the bladder. Radical retropubic prostatectomy is the gold standard treatment for localized prostate cancer. Prostate cancer affects men above 60 years of age. Other risk factors include a family history of prostate cancer, being of African descent, being obese, consuming a diet high in fat, physical inactivity, and working with cadium.
The Da Vinci Surgical System
The Da Vinci Surgical System is a robotic device. There are four main components to the system: 1) the surgeon’s console, where the surgeon sits and views a magnified three-dimensional image of the surgical field; 2) patient side-cart, which sits beside the patient and consists of three instrument arms and one endoscope arm; 3) detachable instruments (endowrist instruments and intuitive masters), which simulate fine motor human movements. The hand movements of the surgeon’s hands at the surgeon’s console are translated into smaller ones by the robotic device and are acted out by the attached instruments; 4) three-dimensional vision system: the camera unit or endoscope arm. The main advantages of use of the robotic device are: 1) the precision of the instrument and improved dexterity due to the use of “wristed” instruments; 2) three-dimensional imaging, with improved ability to locate blood vessels, nerves and tissues; 3) the surgeon’s console, which reduces fatigue accompanied with conventional laparoscopy surgery and allows for tremor-free manipulation. The main disadvantages of use of the robotic device are the costs including instrument costs ($2.6 million in US dollars), cost per use ($200 per use), the costs associated with training surgeons and operating room personnel, and the lack of tactile feedback, with the trade-off being increased visual feedback.
Research Questions
For endometrial and cervical cancers,
1. What is the effectiveness of the Da Vinci Surgical System vs. laparoscopy and laparotomy for women undergoing any hysterectomy for the surgical treatment and management of their endometrial and cervical cancers?
2. What are the incremental costs of the Da Vinci Surgical System vs. laparoscopy and laparotomy for women undergoing any hysterectomy for the surgical treatment and management of their endometrial and cervical cancers?
For prostate cancer,
3. What is the effectiveness of robotically-assisted radical prostatectomy using the Da Vinci Surgical System vs. laparoscopic radical prostatectomy and retropubic radical prostatectomy for the surgical treatment and management of prostate cancer?
4. What are the incremental costs of robotically-assisted radical prostatectomy using the Da Vinci Surgical System vs. laparoscopic radical prostatectomy and retropubic radical prostatectomy for the surgical treatment and management of prostate cancer?
Research Methods
Literature Search
Search Strategy
A literature search was performed on May 12, 2010 using OVID MEDLINE, MEDLINE In-Process and Other Non-Indexed Citations, OVID EMBASE, Wiley Cochrane, CINAHL, Centre for Reviews and Dissemination/International Agency for Health Technology Assessment for studies published from January 1, 2000 until May 12, 2010. Abstracts were reviewed by a single reviewer and, for those studies meeting the eligibility criteria, full-text articles were obtained. Reference lists were also examined for any additional relevant studies not identified through the search. Articles with unknown eligibility were reviewed with a second clinical epidemiologist, then a group of epidemiologists until consensus was established. The quality of evidence was assessed as high, moderate, low or very low according to GRADE methodology.
Inclusion Criteria
English language articles (January 1, 2000-May 12, 2010)
Journal articles that report on the effectiveness or cost-effectiveness for the comparisons of interest using a primary data source (e.g. obtained in a clinical setting)
Journal articles that report on the effectiveness or cost-effectiveness for the comparisons of interest using a secondary data source (e.g. hospital- or population-based registries)
Study design and methods must be clearly described
Health technology assessments, systematic reviews, randomized controlled trials, non-randomized controlled trials and/or cohort studies, case-case studies, regardless of sample size, cost-effectiveness studies
Exclusion Criteria
Duplicate publications (with the more recent publication on the same study population included)
Non-English papers
Animal or in-vitro studies
Case reports or case series without a referent or comparison group
Studies on long-term survival which may be affected by treatment
Studies that do not examine the cancers (e.g. advanced disease) or outcomes of interest
Outcomes of Interest
For endometrial and cervical cancers,
Primary outcomes:
Morbidity factors
- Length of hospitalization
- Number of complications*
Peri-operative factors
- Operation time
- Amount of blood loss*
- Number of conversions to laparotomy*
Number of lymph nodes recovered
For prostate cancer,
Primary outcomes:
Morbidity factors
- Length of hospitalization
- Amount of morphine use/pain*
Peri-operative factors
- Operation time
- Amount of blood loss*
- Number of transfusions*
- Duration of catheterization
- Number of complications*
- Number of anastomotic strictures*
Number of lymph nodes recovered
Oncologic factors
- Proportion of positive surgical margins
Long-term outcomes
- Urinary continence
- Erectile function
Summary of Findings
Robotic use for gynecologic oncology compared to:
Laparotomy: benefits of robotic surgery in terms of shorter length of hospitalization and less blood loss. These results indicate clinical effectiveness in terms of reduced morbidity and safety, respectively, in the context of study design limitations.
The beneficial effect of robotic surgery was shown in pooled analysis for complications, owing to increased sample size.
More work is needed to clarify the role of complications in terms of safety, including improved study designs, analysis and measurement.
Laparoscopy: benefits of robotic surgery in terms of shorter length of hospitalization, less blood loss and fewer conversions to laparotomy likely owing to the technical difficulty of conventional laparoscopy, in the context of study design limitations.
Clinical significance of significant findings for length of hospitalizations and blood loss is low.
Fewer conversions to laparotomy indicate clinical effectiveness in terms of reduced morbidity.
Robotic use for urologic oncology, specifically prostate cancer, compared to:
Retropubic surgery: benefits of robotic surgery in terms of shorter length of hospitalization and less blood loss/fewer individuals requiring transfusions. These results indicate clinical effectiveness in terms of reduced morbidity and safety, respectively, in the context of study design limitations. There was a beneficial effect in terms of decreased positive surgical margins and erectile dysfunction. These results indicate clinical effectiveness in terms of improved cancer control and functional outcomes, respectively, in the context of study design limitations.
Surgeon skill had an impact on cancer control and functional outcomes.
The results for complications were inconsistent when measured as either total number of complications, pain management or anastomosis. There is some suggestion that robotic surgery is safe with respect to less post-operative pain management required compared to retropubic surgery, however improved study design and measurement of complications need to be further addressed.
Clinical significance of significant findings for length of hospitalizations is low.
Laparoscopy: benefits of robotic surgery in terms of less blood loss and fewer individuals requiring transfusions likely owing to the technical difficulty of conventional laparoscopy, in the context of study design limitations.
Clinical significance of significant findings for blood loss is low.
The potential link between less blood loss, improved visualization and improved functional outcomes is an important consideration for use of robotics.
All studies included were observational in nature and therefore the results must be interpreted cautiously.
Economic Analysis
The objective of this project was to assess the economic impact of robotic-assisted laparoscopy (RAL) for endometrial, cervical, and prostate cancers in the province of Ontario.
A budget impact analysis was undertaken to report direct costs associated with open surgery (OS), endoscopic laparoscopy (EL) and robotic-assisted laparoscopy (RAL) based on clinical literature review outcomes, to report a budget impact in the province based on volumes and costs from administrative data sets, and to project a future impact of RAL in Ontario. A cost-effectiveness analysis was not conducted because of the low quality evidence from the clinical literature review.
Hospital costs were obtained from the Ontario Case Costing Initiative (OCCI) for the appropriate Canadian Classification of Health Intervention (CCI) codes restricted to selective ICD-10 diagnostic codes after consultation with experts in the field. Physician fees were obtained from the Ontario Schedule of Benefits (OSB) after consultation with experts in the field. Fees were costed based on operation times reported in the clinical literature for the procedures being investigated. Volumes of procedures were obtained from the Ministry of Health and Long-Term Care (MOHLTC) administrative databases.
Direct costs associated with RAL, EL and OS included professional fees, hospital costs (including disposable instruments), radiotherapy costs associated with positive surgical margins in prostate cancer and conversion to OS in gynecological cancer. The total cost per case was higher for RAL than EL and OS for both gynecological and prostate cancers. There is also an acquisition cost associated with RAL. After conversation with the only supplier in Canada, hospitals are looking to spend an initial 3.6M to acquire the robotic surgical system
Previous volumes of OS and EL procedures were used to project volumes into Years 1-3 using a linear mathematical expression. Burden of OS and EL hysterectomies and prostatectomies was calculated by multiplying the number of cases for that year by the cost/case of the procedure.
The number of procedures is expected to increase in the next three years based on historical data. RAL is expected to capture this market by 65% after consultation with experts. If it’s assumed that RAL will capture the current market in Ontario by 65%, the net impact is expected to be by Year 3, 3.1M for hysterectomy and 6.7M for prostatectomy procedures respectively in the province.
RAL has diffused in the province with four surgical systems in place in Ontario, two in Toronto and two in London. RAL is a more expensive technology on a per case basis due to more expensive robot specific instrumentation and physician labour reflected by increased OR time reported in the clinical literature. There is also an upfront cost to acquire the machine and maintenance contract. RAL is expected to capture the market at 65% with project net impacts by Year 3 of 3.1M and 6.7M for hysterectomy and prostatectomy respectively.
PMCID: PMC3382308  PMID: 23074405
6.  Features of Mobile Diabetes Applications: Review of the Literature and Analysis of Current Applications Compared Against Evidence-Based Guidelines 
Background
Interest in mobile health (mHealth) applications for self-management of diabetes is growing. In July 2009, we found 60 diabetes applications on iTunes for iPhone; by February 2011 the number had increased by more than 400% to 260. Other mobile platforms reflect a similar trend. Despite the growth, research on both the design and the use of diabetes mHealth applications is scarce. Furthermore, the potential influence of social media on diabetes mHealth applications is largely unexplored.
Objective
Our objective was to study the salient features of mobile applications for diabetes care, in contrast to clinical guideline recommendations for diabetes self-management. These clinical guidelines are published by health authorities or associations such as the National Institute for Health and Clinical Excellence in the United Kingdom and the American Diabetes Association.
Methods
We searched online vendor markets (online stores for Apple iPhone, Google Android, BlackBerry, and Nokia Symbian), journal databases, and gray literature related to diabetes mobile applications. We included applications that featured a component for self-monitoring of blood glucose and excluded applications without English-language user interfaces, as well as those intended exclusively for health care professionals. We surveyed the following features: (1) self-monitoring: (1.1) blood glucose, (1.2) weight, (1.3) physical activity, (1.4) diet, (1.5) insulin and medication, and (1.6) blood pressure, (2) education, (3) disease-related alerts and reminders, (4) integration of social media functions, (5) disease-related data export and communication, and (6) synchronization with personal health record (PHR) systems or patient portals. We then contrasted the prevalence of these features with guideline recommendations.
Results
The search resulted in 973 matches, of which 137 met the selection criteria. The four most prevalent features of the applications available on the online markets (n = 101) were (1) insulin and medication recording, 63 (62%), (2) data export and communication, 61 (60%), (3) diet recording, 47 (47%), and (4) weight management, 43 (43%). From the literature search (n = 26), the most prevalent features were (1) PHR or Web server synchronization, 18 (69%), (2) insulin and medication recording, 17 (65%), (3) diet recording, 17 (65%), and (4) data export and communication, 16 (62%). Interestingly, although clinical guidelines widely refer to the importance of education, this is missing from the top functionalities in both cases.
Conclusions
While a wide selection of mobile applications seems to be available for people with diabetes, this study shows there are obvious gaps between the evidence-based recommendations and the functionality used in study interventions or found in online markets. Current results confirm personalized education as an underrepresented feature in diabetes mobile applications. We found no studies evaluating social media concepts in diabetes self-management on mobile devices, and its potential remains largely unexplored.
doi:10.2196/jmir.1874
PMCID: PMC3222161  PMID: 21979293
Mobile health (mHealth); diabetes mellitus; blood glucose self-monitoring; social networks; personal health records (PHR); personalized education; diabetes self-management; health informatics
7.  Practice-Linked Online Personal Health Records for Type 2 Diabetes Mellitus 
Archives of internal medicine  2008;168(16):10.1001/archinte.168.16.1776.
Background
Web-based personal health records (PHRs) have been advocated as a means to improve type 2 diabetes mellitus (DM) care. However, few Web-based systems are linked directly to the electronic medical record (EMR) used by physicians.
Methods
We randomized 11 primary care practices. Intervention practices received access to a DM-specific PHR that imported clinical and medications data, provided patient-tailored decision support, and enabled the patient to author a “Diabetes Care Plan” for electronic submission to their physician prior to upcoming appointments. Active control practices received a PHR to update and submit family history and health maintenance information. All patients attending these practices were encouraged to sign up for online access.
Results
We enrolled 244 patients with DM (37% of the eligible population with registered online access, 4% of the overall population of patients with DM). Study participants were younger (mean age, 56.1 years vs 60.3 years; P< .001) and lived in higher-income neighborhoods (median income, $53 784 vs $49 713; P<.001) but had similar baseline glycemic control compared with nonparticipants. More patients in the intervention arm had their DM treatment regimens adjusted (53% vs 15%; P< .001) compared with active controls. However, there were no significant differences in risk factor control between study arms after 1 year (P=.53).
Conclusions
Previsit use of online PHR linked to the EMR increased rates of DM-related medication adjustment. Low rates of online patient account registration and good baseline control among participants limited the intervention's impact on overall risk factor control.
doi:10.1001/archinte.168.16.1776
PMCID: PMC3829635  PMID: 18779465
8.  A personalized care plan in chronic care: implementation and evaluation 
Purpose
Implementation and evaluation of a personalized care plan for approximately 350 people with (an increased risk of) cardiovascular disease in ten general practices in the Netherlands.
Context
The ‘Healthy Vessels’ (‘Vitale Vaten’) care standard of 2009 describes the optimum care for people with (an increased risk of) cardiovascular disease and is based on the Chronic Care Model. New: working with a personalized care plan, with detailed attention for the promotion of self-management and shared decision-making (SDM). This requires patients to adopt a more active attitude, with a more coaching role from care providers. Vilans has developed the personalized care plan for cardiovascular disease (the booklet ‘Zorgplan Vitale Vaten’) and the personalized care plan for diabetes and for COPD in 2011. In 2011 Vilans also started with the development of a general care plan for patients with multi morbidity diseases.
Data sources
Patients: quantitative survey with a written questionnaire sent to approximately 75 patients. Baseline and end points for 40 patients, plus in-depth interviews with eight patients.
Care providers
Quantitative survey with a written questionnaire sent to 45 care providers. Baseline and end points for 22 care providers, plus in-depth interviews with 10 care providers.
Case description
The personalized care plan is produced by a shared decision-making process and consists of:
A prioritised list of the patient’s SMART objectives
A personalized plan for achieving those objectives
Agreements concerning what the patient will do himself/herself and the support or advice needed
Agreements concerning contact to review the progress (how and when)
The patient or the care provider notes the plan in the patient’s booklet (the ‘Zorgplan Vitale Vaten’=‘Healthy Vessels Care Plan’). This booklet also contains information about the risk factors for cardiovascular disease, the importance of the patient adopting an active role, measurement values, medication and the patient’s care providers.
Advisers from Vilans, the knowledge centre for long-term care in the Netherlands, provide participating organisations guidance for the implementation of the personalized care plan with: work conferences, supporting products and monthly support phone-calls or e-mails.
The project consists of the following phases:
Jan 2010 to Jun 2010: development of materials
Jun 2010 to Oct 2011: implementation and evaluation in ten general practices
Nov 2011 to Feb 2012: project completion and reporting
The results will be available in February 2012
The study questions in this project are:
What effects does the personalized care plan have on the level of self-management of the patients?
What effects does the personalized care plan have on professionals in a multidisciplinary team?
Do the effects also apply to ethnic minority patients and patients with a low socio-economic status?
(Preliminary) conclusions:
Self-management/Shared Decision Making is difficult to implement. Regular feedback and joint learning are needed.
It is helpful when agreements between the patient and the care provider are made concrete: writing things down makes a difference.
Variable response from patients: ranging from ‘good to know you have something to fall back on’ to ‘the idea of writing down personal objectives makes me feel a bit nervous’.
The personalized care plan does not seem suitable for all, in particular not for the elderly, for those of low socio-economic status, and for ethnic minorities.
Discussion
Health care professionals are used to take care of patients with chronic diseases. They are very willing to help and give patients some advice about how they can prevent a chronic disease or have a good life with a chronic disease. During the conferences and phone calls we have with them, we see that the focus is more on caring instead of sharing and self-management. It frustrates professionals when patients do not behave the way they tell them to. They do not know how to handle or turn the conversation into self-management and rather fall back in their roll of caring. It seems necessary to get feedback on a regular basis so they can explore new ways of self-management support together in a multidisciplinary way.
Self-management support is more successful when professionals are working together, looking for ways to take into account the perspective and expectations of the patient as well as those of the professional. The personalized care plan can help patients and professionals exploring their new roles.
There are some relevant questions concerning personalized care plans in practice which we cannot yet answer. We would like to discuss these essential questions with the participants of INIC12. For example:
How important is it for patients to have a personalized care plan? Does it support them in making decisions concerning their health in daily life? In what way can a digital care plan provide help?
Do professionals improve their caring and communication with patients with chronic diseases when they use a personalized care plan?
Is it more successful when one professional is the central care provider for a patient?
What are good ways for integrating personalized care plans in usual care? Does it take more time in comparison to regular care?
How to create possibilities for professionals so they can regard the personalized care plan as an important topic in chronic care? We see it is difficult for a small group of patients. How to implement the personalized care plan for all the patients with a chronic disease?
What do the answers to these questions mean and does individual care planning change the health care process in such a way that self-management can flourish?
PMCID: PMC3617761
personalized care plan; self-management; vascular risk; multidisciplinary team; chronic care
9.  A self-evaluation tool for integrated care services: the Development Model for Integrated Care applied in practice 
Purpose
The purpose of the workshop is to show the applications of the Development Model for Integrated Care (DMIC) in practice. This relatively new and validated model, can be used by integrated care practices to evaluate their integrated care, to assess their phase of development and reveal improvement areas. In the workshop the results of the use of the model in three types of integrated care settings in the Netherlands will be presented. Participants are offered practical instruments based on the validated DMIC to use in their own setting and will be introduced to the webbased tool.
Context
To integrate care from multiple providers into a coherent and streamlined client-focused service, a large number of activities and agreements have to be implemented like streamlining information flows and adequate transfers of clients. In the large range of possible activities it is often not clear what essential activities are and where to start or continue. Also, knowledge about how to further develop integrated care services is needed. The Development Model for Integrated Care (DMIC), based on PhD research of Mirella Minkman, describes nine clusters containing in total 89 elements that contribute to the integration of care. The clusters are named: ‘client-centeredness’, ‘delivery system’, ‘performance management’, ‘quality of care’, ‘result-focused learning’, ‘interprofessional teamwork’, ‘roles and tasks’, ‘commitment’, and ‘transparant entrepreneurship’ [1–3]. In 2011 a new digital webbased self-evolution tool which contains the 89 elements grouped in nine clusters was developed. The DMIC also describes four phases of development [4]. The model is empirically validated in practice by assessing the relevance and implementation of the elements and development phases in 84 integrated care services in The Netherlands: in stroke, acute myocardial infarct (AMI), and dementia services. The validation studies are recently published [5, 6]. In 2011 also other integrated care services started using the model [7]. Vilans developed a digital web-based self-evaluation tool for integrated care services based on the DMIC. A palliative care network, four diabetes services, a youth care service and a network for autism used the self-evaluation tool to evaluate the development of their integrated care service. Because of its generic character, the model and tool are believed to be also interesting internationally.
Data sources
In the workshop we will present the results of three studies in integrated diabetes, youth and palliative care. The three projects consist of multiple steps, see below. Workshop participants could also work with the DMIC following these steps.
One: Preparation of the digital self-evolution tool for integrated care services
Although they are very different, the three integrated care services all wanted to gain insight in their development and improvement opportunities. We tailored the digital self-evaluation tool for each specific integrated care services, but for all the basis was the DMIC. Personal accounts for the digital DMIC self-evalution survey were sent to multiple partners working in each integrated care service (4–16 partners).
Two: Use of the online self-evaluation tool each partner of the local integrated care setting evaluated the integrated care by filling in the web-based questionnaire. The tool consists of three parts (A-C) named: general information about the integrated care practice (A); the clusters and elements of the DMIC (B); and the four phases of development (C). The respondents rated the relevance and presence of each element in their integrated care practice. Respondents were asked to estimate in which phase of development their thought their service was.
Three: Analysing the results
Advisers from Vilans, the Centre of excellence for long-term care in the Netherlands, analysed the self-evolution results in cooperation with the integrated care coordinators. The results show the total amount of implemented integrated care elements per cluster in spider graphs and the development phase as calculated by the DMIC model. Suggestions for further development of the integrated care services were analysed and reported.
Four: Discussing the implications for further development
In a workshop with the local integrated care partners the results of the self-evaluation were presented and discussed. We noticed remarkable results and highlight elements for further development. In addition, we gave advice for further development appropriate to the development phase of the integrated care service. Furthermore, the professionals prioritized the elements and decided which elements to start working on. This resulted in a (quality improvement) plan for the further development of the integrated care service.
Five: Reporting results
In a report all the results of the survey (including consensus scores) and the workshops came together. The integrated care coordinators stated that the reports really helped them to assess their improvement strategy. Also, there was insight in the development phase of their service which gave tools for further development.
Case description
The three cases presented are a palliative network, an integrated diabetes services and an integrated care network for youth in the Netherlands. The palliative care network wanted to reflect on their current development, to build a guiding framework for further development of the network. About sixteen professionals within the network worked with the digital self-evaluation tool and the DMIC: home care organisations, welfare organizations, hospice centres, health care organisations, community organizations.
For diabetes care, a Dutch health care insurance company wished to gain insight in the development of the contracted integrated care services to stimulate further development of the services. Professionals of three diabetes integrated care services were invited to fill in the digital self-evaluation tool. Of each integrated care service professionals like a general practitioner, a diabetes nurse, a medical specialist, a dietician and a podiatrist were invited. In youth care, a local health organisation wondered whether the DMIC could be helpful to visualize the results of youth integrated care services at process- and organisational level. The goal of the project was to define indicators at a process- and organisational level for youth care services based on the DMIC. In the future, these indicators might be used to evaluate youth care integrated care services and improve the quality of youth care within the Netherlands.
Conclusions and discussion
It is important for the quality of integrated care services that the involved coordinators, managers and professionals are aware of the development process of the integrated care service and that they focus on elements which can further develop and improve their integrated care. However, we noticed that integrated care services in the Netherlands experience difficulties in developing their integrated care service. It is often not clear what essential activities are to work on and how to further develop the integrated care service. A guiding framework for the development of integrated care was missing. The DMIC model has been developed for that reason and offers a useful tool for assessment, self-evaluation or improvement of integrated care services in practice. The model has been validated for AMI, dementia and stroke services. The latest new studies in diabetes, palliative care and youth care gave further insight in the generic character of the DMIC. Based on these studies it can be assumed that the DMIC can be used for multiple types of integrated care services. The model is assumed to be interesting for an international audience. Improving integrated care is a complex topic in a large number of countries; the DMIC is also based on the international literature. Dutch integrated care coordinators stated that the DMIC helped them to assess their integrated care development in practice and supported them in obtaining ideas for expanding and improving their integrated care activities.
The web-based self-evaluation tool focuses on a process- and organisational level of integrated care. Also, the self assessed development phase can be compared to the development phase as calculated by the DMIC tool. The cases showed this is fruitful input for discussions. When using the tool, the results can also be used in quality policy reports and improvement plans. The web-based tool is being tested at this moment in practice, but in San Marino we can present the latest webversion and demonstrate with a short video how to use the tool and model. During practical exercises in the workshop the participants will experience how the application of the DMIC can work for them in practice or in research. For integrated care researchers and policy makers, the DMIC questionnaire and tool is a promising method for further research and policy plans in integrated care.
PMCID: PMC3617779
development model for integrated care; development of integrated care services; implementation and improvement of integrated care; self evaluation
10.  Injectable and Oral Contraceptive Use and Cancers of the Breast, Cervix, Ovary, and Endometrium in Black South African Women: Case–Control Study 
PLoS Medicine  2012;9(3):e1001182.
A case-control study conducted in South Africa provides new estimates of the risk of specific cancers of the female reproductive system associated with use of injectable and oral contraceptives.
Background
Oral contraceptives are known to influence the risk of cancers of the female reproductive system. Evidence regarding the relationship between injectable contraceptives and these cancers is limited, especially in black South Africans, among whom injectable contraceptives are used more commonly than oral contraceptives.
Methods and Findings
We analysed data from a South African hospital-based case–control study of black females aged 18–79 y, comparing self-reported contraceptive use in patients with breast (n = 1,664), cervical (n = 2,182), ovarian (n = 182), and endometrial (n = 182) cancer, with self-reported contraceptive use in 1,492 control patients diagnosed with cancers with no known relationship to hormonal contraceptive use. We adjusted for potential confounding factors, including age, calendar year of diagnosis, education, smoking, alcohol, parity/age at first birth, and number of sexual partners. Among controls, 26% had used injectable and 20% had used oral contraceptives. For current and more recent users versus never users of oral or injectable contraceptives, the odds ratios (ORs) for breast cancer were significantly increased in users of oral and/or injectable contraceptives (OR 1.66, 95% CI 1.28–2.16, p<0.001) and separately among those exclusively using oral (1.57, 1.03–2.40, p = 0.04) and exclusively using injectable (OR 1.83, 1.31–2.55, p<0.001) contraceptives; corresponding ORs for cervical cancer were 1.38 (1.08–1.77, p = 0.01), 1.01 (0.66–1.56, p = 0.96), and 1.58 (1.16–2.15, p = 0.004). There was no significant increase in breast or cervical cancer risk among women ceasing hormonal contraceptive use ≥10 y previously (p = 0.3 and p = 0.9, respectively). For durations of use ≥5 y versus never use, the ORs of ovarian cancer were 0.60 (0.36–0.99, p = 0.04) for oral and/or injectable contraceptive use and 0.07 (0.01–0.49, p = 0.008) for injectable use exclusively; corresponding ORs for endometrial cancer were 0.44 (0.22–0.86, p = 0.02) and 0.36 (0.11–1.26, p = 0.1).
Conclusions
In this study, use of oral and of injectable hormonal contraceptives was associated with a transiently increased risk of breast and cervical cancer and, for long durations of use, with a reduced risk of ovarian and endometrial cancer. The observed effects of injectable and of oral contraceptives on cancer risk in this study did not appear to differ substantially.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
Hormonal contraceptives are among the most commonly used medications. Globally, more than 210 million women currently use either hormonal contraceptive pills or injectable contraceptives. Contraceptive pills usually contain manmade versions of the female sex hormones estrogen and progesterone (the combined oral contraceptive, or “pill”); most injectable hormonal contraceptives contain only manmade progesterone preparations. Hormonal contraceptives, which prevent pregnancy by disrupting the cyclical changes in estrogen and progesterone levels that prepare the body for pregnancy, have revolutionized birth control since they first became available in the early 1960s. However, it is now known that taking the pill also influences women's risk of developing cancers of the female reproductive system. Current and recent users have an increased risk of developing breast and cervical cancer (the cervix is the structure that connects the womb to the vagina) compared to never users, although this increased risk quickly disappears when women stop taking the pill. By contrast, women who have used the pill have a reduced risk of developing ovarian cancer and cancer of the womb (endometrial cancer) compared to never users that increases with the duration of pill use and persists for many years after use ceases. These effects on reproductive system cancers are thought to occur because these cancers depend on naturally occurring sex hormones for their development and growth.
Why Was This Study Done?
Although the evidence that the pill influences the risk of developing cancers of the female reproductive system is extensive, much less is known about how injectable hormonal contraceptives affect cancer risk. In this hospital-based case–control study (a study that compares the characteristics of people with and without a specific condition), the researchers investigate the relationship between the use of oral and injectable hormonal contraceptives and cancers of the breast, cervix, ovary, and endometrium among black South African women. Injectable contraceptives have been used for longer in South Africa than elsewhere and are used more commonly than oral contraceptives among black South African women.
What Did the Researchers Do and Find?
As part of the Johannesburg Cancer Case Control Study, which recruits black patients attending Johannesburg public referral hospitals for cancer treatment, the researchers compared hormonal contraceptive use in women with breast, cervical, ovarian, or endometrial cancer with contraceptive use in women diagnosed with other cancers such as lung, colon, and rectal cancers, which are not known to be influenced by hormonal contraceptives. Among the controls, a quarter had used injectable contraceptives and a fifth had used oral contraceptives. After adjusting for other factors that might influence cancer risk such as age, smoking, and number of sexual partners, the odds ratio (OR) of breast cancer among current and recent users of oral and/or injectable contraceptives compared to never users was 1.66. That is, the risk of developing breast cancer among current and recent users of hormonal contraceptives was 1.66 times that among never users. For women using oral contraceptives exclusively or injectable contraceptives exclusively, the ORs of breast cancer were 1.57 and 1.83, respectively. There were also increases in cervical cancer risk among current and recent users of hormonal contraceptives compared to never users, but no significant increase in breast or cervical cancer risk among women who had ceased hormonal contraceptive use more than ten years previously. Finally, the use of hormonal contraceptives for more than five years reduced the risk of both ovarian and endometrial cancer.
What Do These Findings Mean?
These findings indicate that, among black women in South Africa, the use of oral or injectable hormonal contraceptives is associated with a transiently increased risk of breast and cervical cancer, and that extended use of these contraceptives is associated with a reduced risk of ovarian and endometrial cancer. Moreover, they suggest that the effects of oral versus injectable contraceptives on cancer risk do not differ substantially, although for endometrial and ovarian cancer the small number of cases exposed to injectable contraceptives limits the accuracy of the risk estimates. Other limitations of this study include the possibility that the findings may be affected by uncontrolled confounding. That is, women who used hormonal contraceptives may have shared other unidentified characteristics that affected their cancer risk. Nevertheless, these findings provide new information about the effects of oral and injectable hormonal contraceptives on cancer risk that should help women make informed decisions about their choice of contraceptive method.
Additional Information
Please access these web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001182.
The US National Cancer Institute provides information on breast cancer (including personal stories from breast cancer survivors), cervical cancer, ovarian cancer, and endometrial cancer for patients and health professionals, and a fact sheet on oral contraceptives and cancer risk (in English and Spanish)
Cancer Research UK also provides information on breast cancer, cervical cancer, ovarian cancer, and endometrial cancer and information about the birth control pill and cancer risk
Eyes on the Prize, an online support group for women who have had cancers of the female reproductive system, has personal stories; further personal stories about breast, cervical, and ovarian cancer are provided by the charity Healthtalkonline
doi:10.1371/journal.pmed.1001182
PMCID: PMC3295825  PMID: 22412354
11.  The Effectiveness of Mobile-Health Technology-Based Health Behaviour Change or Disease Management Interventions for Health Care Consumers: A Systematic Review 
PLoS Medicine  2013;10(1):e1001362.
Caroline Free and colleagues systematically review a fast-moving field, that of the effectiveness of mobile technology interventions delivered to healthcare consumers, and conclude that high-quality, adequately powered trials of optimized interventions are required to evaluate effects on objective outcomes.
Background
Mobile technologies could be a powerful media for providing individual level support to health care consumers. We conducted a systematic review to assess the effectiveness of mobile technology interventions delivered to health care consumers.
Methods and Findings
We searched for all controlled trials of mobile technology-based health interventions delivered to health care consumers using MEDLINE, EMBASE, PsycINFO, Global Health, Web of Science, Cochrane Library, UK NHS HTA (Jan 1990–Sept 2010). Two authors extracted data on allocation concealment, allocation sequence, blinding, completeness of follow-up, and measures of effect. We calculated effect estimates and used random effects meta-analysis. We identified 75 trials. Fifty-nine trials investigated the use of mobile technologies to improve disease management and 26 trials investigated their use to change health behaviours. Nearly all trials were conducted in high-income countries. Four trials had a low risk of bias. Two trials of disease management had low risk of bias; in one, antiretroviral (ART) adherence, use of text messages reduced high viral load (>400 copies), with a relative risk (RR) of 0.85 (95% CI 0.72–0.99), but no statistically significant benefit on mortality (RR 0.79 [95% CI 0.47–1.32]). In a second, a PDA based intervention increased scores for perceived self care agency in lung transplant patients. Two trials of health behaviour management had low risk of bias. The pooled effect of text messaging smoking cessation support on biochemically verified smoking cessation was (RR 2.16 [95% CI 1.77–2.62]). Interventions for other conditions showed suggestive benefits in some cases, but the results were not consistent. No evidence of publication bias was demonstrated on visual or statistical examination of the funnel plots for either disease management or health behaviours. To address the limitation of the older search, we also reviewed more recent literature.
Conclusions
Text messaging interventions increased adherence to ART and smoking cessation and should be considered for inclusion in services. Although there is suggestive evidence of benefit in some other areas, high quality adequately powered trials of optimised interventions are required to evaluate effects on objective outcomes.
Please see later in the article for the Editors' Summary
Editors’ Summary
Background
Every year, millions of people die from cardiovascular diseases (diseases of the heart and circulation), chronic obstructive pulmonary disease (a long-term lung disease), lung cancer, HIV infection, and diabetes. These diseases are increasingly important causes of mortality (death) in low- and middle-income countries and are responsible for nearly 40% of deaths in high-income countries. For all these diseases, individuals can adopt healthy behaviors that help prevent disease onset. For example, people can lower their risk of diabetes and cardiovascular disease by maintaining a healthy body weight, and, if they are smokers, they can reduce their risk of lung cancer and cardiovascular disease by giving up cigarettes. In addition, optimal treatment of existing diseases can reduce mortality and morbidity (illness). Thus, in people who are infected with HIV, antiretroviral therapy delays the progression of HIV infection and the onset of AIDS, and in people who have diabetes, good blood sugar control can prevent retinopathy (a type of blindness) and other serious complications of diabetes.
Why Was This Study Done?
Health-care providers need effective ways to encourage "health-care consumers" to make healthy lifestyle choices and to self-manage chronic diseases. The amount of information, encouragement and support that can be conveyed to individuals during face-to-face consultations or through traditional media such as leaflets is limited, but mobile technologies such as mobile phones and portable computers have the potential to transform the delivery of health messages. These increasingly popular technologies—more than two-thirds of the world's population now owns a mobile phone—can be used to deliver health messages to people anywhere and at the most relevant times. For example, smokers trying to quit smoking can be sent regular text messages to sustain their motivation, but can also use text messaging to request extra support when it is needed. But is "mHealth," the provision of health-related services using mobile communication technology, an effective way to deliver health messages to health-care consumers? In this systematic review (a study that uses predefined criteria to identify all the research on a given topic), the researchers assess the effectiveness of mobile technology-based health behavior change interventions and disease management interventions delivered to health-care consumers.
What Did the Researchers Do and Find?
The researchers identified 75 controlled trials (studies that compare the outcomes of people who do and do not receive an intervention) of mobile technology-based health interventions delivered to health-care consumers that met their predefined criteria. Twenty-six trials investigated the use of mobile technologies to change health behaviors, 59 investigated their use in disease management, most were of low quality, and nearly all were undertaken in high-income countries. In one high-quality trial that used text messages to improve adherence to antiretroviral therapy among HIV-positive patients in Kenya, the intervention significantly reduced the patients’ viral load but did not significantly reduce mortality (the observed reduction in deaths may have happened by chance). In two high-quality UK trials, a smoking intervention based on text messaging (txt2stop) more than doubled biochemically verified smoking cessation. Other lower-quality trials indicated that using text messages to encourage physical activity improved diabetes control but had no effect on body weight. Combined diet and physical activity text messaging interventions also had no effect on weight, whereas interventions for other conditions showed suggestive benefits in some but not all cases.
What Do These Findings Mean?
These findings provide mixed evidence for the effectiveness of health intervention delivery to health-care consumers using mobile technologies. Moreover, they highlight the need for additional high-quality controlled trials of this mHealth application, particularly in low- and middle-income countries. Specifically, the demonstration that text messaging interventions increased adherence to antiretroviral therapy in a low-income setting and increased smoking cessation in a high-income setting provides some support for the inclusion of these two interventions in health-care services in similar settings. However, the effects of these two interventions need to be established in other settings and their cost-effectiveness needs to be measured before they are widely implemented. Finally, for other mobile technology–based interventions designed to change health behaviors or to improve self-management of chronic diseases, the results of this systematic review suggest that the interventions need to be optimized before further trials are undertaken to establish their clinical benefits.
Additional Information
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001362.
A related PLOS Medicine Research Article by Free et al. investigates the ability of mHealth technologies to improve health-care service delivery processes
Wikipedia has a page on mHealth (note: Wikipedia is a free online encyclopedia that anyone can edit; available in several languages)
mHealth: New horizons for health through mobile technologies is a global survey of mHealth prepared by the World Health Organization’s Global Observatory for eHealth (eHealth is health-care practice supported by electronic processes and communication)
The mHealth in Low-Resource Settings website, which is maintained by the Netherlands Royal Tropical Institute, provides information on the current use, potential, and limitations of mHealth in low-resource settings
More information about Txt2stop is available, the UK National Health Service Choices website provides an analysis of the Txt2stop trial and what its results mean, and the UK National Health Service Smokefree website provides a link to a Quit App for the iPhone
The US Centers for Disease Control and Prevention has launched a text messaging service that delivers regular health tips and alerts to mobile phones
doi:10.1371/journal.pmed.1001362
PMCID: PMC3548655  PMID: 23349621
12.  Online self-management in patients with COPD: with or without the doctor/nurse 
Introduction
Curavista Health is an online patient self-management platform. Patients use the platform with or without their doctor/nurse. Fifty centres in Benelux are using the platform for diabetes, hypertension, asthma, COPD, migraine, Parkinson’s Disease, Multiple Sclerosis, breast cancer, prostate cancer, LUTS, bi-polar diseases, chronic pain, Herpes Zoster, GERD, preConsult, and adherence to medical therapy. Many hospitals use one or more programmes. The platform is currently available in Dutch, English and French.
COPD
Chronic Obstructive Pulmonary Disease (COPD) is a chronic disease in the elderly. Airways are increasingly blocked and exacerbations (increase of symptoms) are common. Exacerbations ameliorate the disease and diminish the quality of life. Exacerbations are responsible for most of the augmenting costs of treating COPD. Self-management is a promising method as patients learn to recognize and treat as early as possible exacerbations.
Case study
The case study is called: mijncopdonline.nl. It is a self management programme that consists of 3 basic elements:
status (CCQ, BMI, FEV1, MRC-dyspnoea, medication)
self management (how do I feel today and what are my specific actions?)
eConsult.
Since mid-2008 patients can register online and participate in the programme (without involving their GP/pulmonologist/nurse). The pulmonary division of the Havenziekenhuis (division of the Erasmus MC) started using the programme in October 2010 and incorporated it into their daily routine. All out-patients can participate. The team monitors patients online, exchange eConsultations with patients and discusses the results during the regular visit.
Results
We compared the adherence to the programme in two groups: (1) the group without the doctor/nurse as a coach (n=495) and (2) the group with the doctor/nurse as a coach (n=42). The content of the programme was identical in both groups. Age and gender were similar in both groups and was representative of the overall COPD population of the Havenziekenhuis. In the group without coaching, 65% of participants used the programme once, 22% twice and 13% three times or more. In the group with coaching, 24% used the programme once, 14% twice and 62% three times or more.
Discussion
Self-management is a hot topic. Self-management in itself is not new: patients have been keeping diaries on paper for many years. However, in recent years, online database technology has provided an opportunity to create interactive, personalized, self-management programmes, often referred to as eHealth. The word ‘self-management’ suggests that patients manage themselves and the role of the professional is limited. However, these data suggest that participants make better use of eHealth programmes when supported by healthcare professionals. Therefore eHealth should be embedded into regular care in order to be fully effective.
PMCID: PMC3571174
COPD; self management; participation; elderly
13.  Two Complementary Personal Medication Management Applications Developed on a Common Platform: Case Report 
Background
Adverse drug events are a major safety issue in ambulatory care. Improving medication self-management could reduce these adverse events. Researchers have developed medication applications for tethered personal health records (PHRs), but little has been reported about medication applications for interoperable PHRs.
Objective
Our objective was to develop two complementary personal health applications on a common PHR platform: one to assist children with complex health needs (MyMediHealth), and one to assist older adults in care transitions (Colorado Care Tablet).
Methods
The applications were developed using a user-centered design approach. The two applications shared a common PHR platform based on a service-oriented architecture. MyMediHealth employed Web and mobile phone user interfaces. Colorado Care Tablet employed a Web interface customized for a tablet PC.
Results
We created complementary medication management applications tailored to the needs of distinctly different user groups using common components. Challenges were addressed in multiple areas, including how to encode medication identities, how to incorporate knowledge bases for medication images and consumer health information, how to include supplementary dosing information, how to simplify user interfaces for older adults, and how to support mobile devices for children.
Conclusions
These prototypes demonstrate the utility of abstracting PHR data and services (the PHR platform) from applications that can be tailored to meet the needs of diverse patients. Based on the challenges we faced, we provide recommendations on the structure of publicly available knowledge resources and the use of mobile messaging systems for PHR applications.
doi:10.2196/jmir.1815
PMCID: PMC3222174  PMID: 21749966
Health records, personal; drug information services; medical informatics
14.  Can Broader Diffusion of Value-Based Insurance Design Increase Benefits from US Health Care without Increasing Costs? Evidence from a Computer Simulation Model 
PLoS Medicine  2010;7(2):e1000234.
Using a computer simulation based on US data, R. Scott Braithwaite and colleagues calculate the benefits of value-based insurance design, in which patients pay less for highly cost-effective services.
Background
Evidence suggests that cost sharing (i.e.,copayments and deductibles) decreases health expenditures but also reduces essential care. Value-based insurance design (VBID) has been proposed to encourage essential care while controlling health expenditures. Our objective was to estimate the impact of broader diffusion of VBID on US health care benefits and costs.
Methods and Findings
We used a published computer simulation of costs and life expectancy gains from US health care to estimate the impact of broader diffusion of VBID. Two scenarios were analyzed: (1) applying VBID solely to pharmacy benefits and (2) applying VBID to both pharmacy benefits and other health care services (e.g., devices). We assumed that cost sharing would be eliminated for high-value services (<$100,000 per life-year), would remain unchanged for intermediate- or unknown-value services ($100,000–$300,000 per life-year or unknown), and would be increased for low-value services (>$300,000 per life-year). All costs are provided in 2003 US dollars. Our simulation estimated that approximately 60% of health expenditures in the US are spent on low-value services, 20% are spent on intermediate-value services, and 20% are spent on high-value services. Correspondingly, the vast majority (80%) of health expenditures would have cost sharing that is impacted by VBID. With prevailing patterns of cost sharing, health care conferred 4.70 life-years at a per-capita annual expenditure of US$5,688. Broader diffusion of VBID to pharmaceuticals increased the benefit conferred by health care by 0.03 to 0.05 additional life-years, without increasing costs and without increasing out-of-pocket payments. Broader diffusion of VBID to other health care services could increase the benefit conferred by health care by 0.24 to 0.44 additional life-years, also without increasing costs and without increasing overall out-of-pocket payments. Among those without health insurance, using cost saving from VBID to subsidize insurance coverage would increase the benefit conferred by health care by 1.21 life-years, a 31% increase.
Conclusion
Broader diffusion of VBID may amplify benefits from US health care without increasing health expenditures.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
More money is spent per person on health care in the US than in any other country. US health care expenditure accounts for 16.2% of the gross domestic product and this figure is rising. Indeed, the increase in health care costs is outstripping the economy's growth rate. Consequently, US policy makers and providers of health insurance—health care in the US is largely provided by the private sector and is paid for through private health insurance or through government programs such as Medicare and Medicaid—are looking for better ways to control health expenditures. Although some health care cost reductions can be achieved by increasing efficiency, controlling the quantity of health care consumed is an essential component of strategies designed to reduce health expenditures. These strategies can target health care providers (for example, by requiring primary care physicians to provide referrals before their patients' insurance provides cover for specialist care) or can target consumers, often through cost sharing. Nowadays, most insurance plans include several tiers of cost sharing in which patients pay a larger proportion of the costs of expensive interventions than of cheap interventions.
Why Was This Study Done?
Cost sharing decreases health expenditure but it can also reduce demand for essential care and thus reduce the quality of care. Consequently, some experts have proposed value-based insurance design (VBID), an approach in which the amount of cost sharing is set according to the “value” of an intervention rather than its cost. The value of an intervention is defined as the ratio of the additional benefits to the additional costs of the intervention when compared to the next best alternative intervention. Under VBID, cost sharing could be waived for office visits necessary to control blood pressure in people with diabetes, which deliver high-value care, but could be increased for high-tech scans for dementia, which deliver low-value care. VBID has been adopted by several private health insurance schemes and its core principal is endorsed by US policy makers. However, it is unclear whether wider use of VBID is warranted. In this study, the researchers use a computer simulation of the US health care system to estimate the impact of broader diffusion of VBID on US health care benefits and costs.
What Did the Researchers Do and Find?
The researchers used their computer simulation to estimate the impact of applying VBID to cost sharing for drugs alone and to cost sharing for drugs, procedures, and other health care services for one million hypothetical US patients. In their simulation, the researchers eliminated cost sharing for services that cost less than US$100,000 per life-year gained (high-value services) and increased cost-sharing for services that cost more than US$300,000 per life-year gained (low-value services); cost-sharing remained unchanged for intermediate- or unknown-value services. With the current pattern of cost sharing, 60% of health expenditure is spent on low-value services and health care increases life expectancy by 4.70 years for an annual per person expenditure of US$5,688, the researchers report. With widespread application of VBID to cost sharing for drugs alone, health care increased life expectancy by an additional 0.03 to 0.05 years without increasing costs. With widespread application of VBID to cost sharing for other health care services, health care increased life expectancy by a further 0.24 to 0.44 years without additional costs. Finally, if the costs saved by applying VBID were used to subsidize insurance for the 15% of the US population currently without health insurance, the benefit conferred by health care among these people would increase by 1.21 life-years.
What Do These Findings Mean?
The findings of this study depend on the many assumptions included in the computer simulation, which, although complex, is a greatly simplified representation of the US health care system. Nevertheless, these findings suggest that if VBID were used more widely within the US health care system to encourage the use of high-value services, it might be possible to amplify the benefits from US health care without increasing health expenditures. Importantly, the money saved by VBID could be used to help fund universal insurance, a central aim of US health care reform. More research is needed, however, to determine the value of various health care interventions and to investigate whether other ways of linking value to cost sharing might yield even better gains in life expectancy at little or no additional cost.
Additional Information
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1000234.
Wikipedia has a page on health care in the United States (note that Wikipedia is a free online encyclopedia that anyone can edit; available in several languages)
Families USA works to promote high-quality affordable health care for all Americans and provides information about all aspects of US health care and about US health care reforms
The US Centers for Medicare and Medicaid provides information on the major government health insurance programs and on US national health expenditure statistics
doi:10.1371/journal.pmed.1000234
PMCID: PMC2821897  PMID: 20169114
15.  Uncovering Treatment Burden as a Key Concept for Stroke Care: A Systematic Review of Qualitative Research 
PLoS Medicine  2013;10(6):e1001473.
In a systematic review of qualitative research, Katie Gallacher and colleagues examine the evidence related to treatment burden after stroke from the patient perspective.
Please see later in the article for the Editors' Summary
Background
Patients with chronic disease may experience complicated management plans requiring significant personal investment. This has been termed ‘treatment burden’ and has been associated with unfavourable outcomes. The aim of this systematic review is to examine the qualitative literature on treatment burden in stroke from the patient perspective.
Methods and Findings
The search strategy centred on: stroke, treatment burden, patient experience, and qualitative methods. We searched: Scopus, CINAHL, Embase, Medline, and PsycINFO. We tracked references, footnotes, and citations. Restrictions included: English language, date of publication January 2000 until February 2013. Two reviewers independently carried out the following: paper screening, data extraction, and data analysis. Data were analysed using framework synthesis, as informed by Normalization Process Theory. Sixty-nine papers were included. Treatment burden includes: (1) making sense of stroke management and planning care, (2) interacting with others, (3) enacting management strategies, and (4) reflecting on management. Health care is fragmented, with poor communication between patient and health care providers. Patients report inadequate information provision. Inpatient care is unsatisfactory, with a perceived lack of empathy from professionals and a shortage of stimulating activities on the ward. Discharge services are poorly coordinated, and accessing health and social care in the community is difficult. The study has potential limitations because it was restricted to studies published in English only and data from low-income countries were scarce.
Conclusions
Stroke management is extremely demanding for patients, and treatment burden is influenced by micro and macro organisation of health services. Knowledge deficits mean patients are ill equipped to organise their care and develop coping strategies, making adherence less likely. There is a need to transform the approach to care provision so that services are configured to prioritise patient needs rather than those of health care systems.
Systematic Review Registration
International Prospective Register of Systematic Reviews CRD42011001123
Please see later in the article for the Editors' Summary
Editors' Summary
Background
Every year, 15 million people have a stroke. About 5 million of these people die within a few days, and another 5 million are left disabled. Stroke occurs when the blood supply of the brain is suddenly interrupted by a blood vessel in the brain being blocked by a blood clot (ischemic stroke) or bursting (hemorrhagic stroke). Deprived of the oxygen normally carried to them by the blood, the brain cells near the blockage die. The symptoms of stroke depend on which part of the brain is damaged but include sudden weakness or paralysis along one side of the body, vision loss in one or both eyes, and confusion or trouble speaking or understanding speech. Anyone experiencing these symptoms should seek immediate medical attention because prompt treatment can limit the damage to the brain. In the longer term, post-stroke rehabilitation can help individuals overcome the physical disabilities caused by stroke, and drugs that thin the blood, reduce blood pressure and reduce cholesterol (major risk factors for stroke) alongside behavioral counseling can reduce the risk of a second stroke.
Why Was This Study Done?
Treatment for, and rehabilitation from, stroke is a lengthy process that requires considerable personal investment from the patient. The term “treatment burden” describes the self-care practices that patients with stroke and other chronic diseases must perform to follow the complicated management strategies that have been developed for these conditions. Unfortunately, treatment burden can overwhelm patients. They may be unable to cope with the multiple demands placed on them by health-care providers and systems for their self-care, a situation that leads to poor adherence to therapies and poor outcomes. For example, patients may find it hard to complete all the exercises designed to help them regain full movement of their limbs after a stroke. Treatment burden has been poorly examined in relation to stroke. Here, the researchers identify and describe the treatment burden in stroke by undertaking a systematic review (a study that uses predefined criteria to identify all the literature on a given topic) of qualitative studies on the patient experience of stroke management. Qualitative studies collect non-quantitative data so, for example, a qualitative study on stroke treatment might ask people how the treatment made them feel whereas a quantitative study might compare clinical outcomes between those receiving and not receiving the treatment.
What Did the Researchers Do and Find?
The researchers identified 69 qualitative studies dealing with the experiences of stroke management of adult patients and analyzed the data in these papers using framework synthesis—an approach that divides data into thematic categories. Specifically, the researchers used a coding framework informed by normalization process theory, a sociological theory of the implementation, embedding and integration of tasks and practices; embedding is the process of making tasks and practices a routine part of everyday life and integration refers to sustaining these embedded practices. The researchers identified four main areas of treatment burden for stroke: making sense of stroke management and planning care; interacting with others, including health care professionals, family and other patients with stroke; enacting management strategies (including enduring institutional admissions, managing stroke in the community, reintegrating into society and adjusting to life after stroke); and reflecting on management to make decisions about self-care. Moreover, they identified problems in all these areas, including inadequate provision of information, poor communication with health-care providers, and unsatisfactory inpatient care.
What Do These Findings Mean?
These findings show that stroke management is extremely demanding for patients and is influenced by both the micro and macro organization of health services. At the micro organizational level, fragmented care and poor communication between patients and clinicians and between health-care providers can mean patients are ill equipped to organize their care and develop coping strategies, which makes adherence to management strategies less likely. At the macro organizational level, it can be hard for patients to obtain the practical and financial help they need to manage their stroke in the community. Overall, these findings suggest that care provision for stroke needs to be transformed so that the needs of patients rather than the needs of health-care systems are prioritized. Further work is required, however, to understand how the patient experience of treatment burden is affected by the clinical characteristics of stroke, by disability level, and by other co-existing diseases. By undertaking such work, it should be possible to generate a patient-reported outcome measure of treatment burden that, if used by policy makers and health-care providers, has the potential to improve the quality of stroke care.
Additional Information
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001473.
The US National Institute of Neurological Disorders and Stroke provides information about all aspects of stroke (in English and Spanish); its Know Stroke site provides educational materials about stroke prevention, treatment, and rehabilitation including personal stories (in English and Spanish); the US National Institutes of Health SeniorHealth website has additional information about stroke
The Internet Stroke Center provides detailed information about stroke for patients, families, and health professionals (in English and Spanish)
The UK National Health Service Choices website also provides information about stroke for patients and their families, including personal stories
MedlinePlus has links to additional resources about stroke (in English and Spanish)
The UK not-for-profit website Healthtalkonline provides personal stories about stroke
Wikipedia provides information on the burden of treatment and on the normalization process theory (note: Wikipedia is a free online encyclopedia that anyone can edit; available in several languages)
doi:10.1371/journal.pmed.1001473
PMCID: PMC3692487  PMID: 23824703
16.  Consumers’ Perceptions About and Use of the Internet for Personal Health Records and Health Information Exchange: Analysis of the 2007 Health Information National Trends Survey 
Background
Personal health records (PHRs) and the sharing of health information through health information exchange (HIE) have been advocated as key new components in the effective delivery of modern health care. It is important to understand consumer attitudes toward utilization of PHRs and HIE to evaluate the public’s willingness to adopt these new health care tools.
Objective
The purpose of this study was to examine consumer attitudes toward PHRs and their health care providers’ use of HIE, as well as to evaluate consumer use of the Internet for tracking PHRs.
Methods
Analysis of data from the 2007 iteration of the Health Information National Trends Study (HINTS, N=7674) was conducted using multivariate logistic regression to identify predictors of consumer (1) appraisal of PHRs, (2) appraisal of health care provider use of HIE, and (3) use of the Internet for tracking PHRs.
Results
: Approximately 86% of US adults rated electronic access to their PHRs as important. However, only 9% of them used the Internet for tracking PHRs. Those who rated electronic access to their PHRs as important were more likely to be Hispanic (odds ratio [OR] = 1.34, 95% confidence interval [CI] 1.04 - 1.72) and Internet users (OR = 1.27, 95% CI = 1.02 - 1.57) and less likely to be age 65 and above (OR = 0.50, 95% CI = 0.38 - 0.67) or individuals whose doctors always ensured their understanding of their health (OR = 0.62, 95% CI = 0.49 – 0.78). Those who rated HIE as important were more likely to be 45 to 54 years of age (OR = 1.46, 95% CI = 1.03 - 2.08), 55 to 64 years of age (OR = 1.83, 95% CI = 1.32 - 2.53), or 65 and above (OR = 1.76, 95% CI = 1.27 - 2.43) and less likely to be women (OR = 0.80, 95% CI = 0.68 - 0.95) or individuals who perceive their health information as not safely guarded by their doctors (OR = 0.53, 95% CI = 0.40 - 0.69). Among Internet users, those who used the Internet to track their PHRs were more likely to be college graduates (OR = 1.84, 95% = 1.32 - 2.59) or to have completed some college courses (OR = 1.46, 95% CI = 1.02 - 2.11), to be Hispanic (OR = 1.92, 95% CI = 1.23 - 2.98), or to be individuals with health care provider access (OR = 1.90, 95% CI = 1.21 - 2.97). Women were less likely to use the Internet for tracking PHRs than men (OR = 0.78, 95% CI = 0.61 - 1.00).
Conclusions
Despite widespread positive appraisal of electronic access to PHRs as important, Internet use for tracking PHRs remains uncommon. To promote PHR adoption, the digital divide associated with the gap in health literacy must be improved, and cultural issues and the doctor-patient relationship need to be studied. Further work also needs to address consumer concerns regarding the security of HIE.
doi:10.2196/jmir.1668
PMCID: PMC3056530  PMID: 21169163
Internet; personal health records; health information exchange; consumer perceptions and utilization; demography; health care surveys; health communication trend
17.  Immediate Risk for Cardiovascular Events and Suicide Following a Prostate Cancer Diagnosis: Prospective Cohort Study 
PLoS Medicine  2009;6(12):e1000197.
Katja Fall and Fang Fang and colleagues find that men newly diagnosed with prostate cancer are at increased risk of cardiovascular events and suicide.
Background
Stressful life events have been shown to be associated with altered risk of various health consequences. The aim of the present study was to investigate whether the emotional stress evoked by a prostate cancer diagnosis increases the immediate risks of cardiovascular events and suicide.
Methods and Findings
We conducted a prospective cohort study by following all men in Sweden who were 30 y or older (n = 4,305,358) for a diagnosis of prostate cancer (n = 168,584) and their subsequent occurrence of cardiovascular events and suicide between January 1, 1961 and December 31, 2004. We used Poisson regression models to calculate relative risks (RRs) and 95% confidence intervals (CIs) of cardiovascular events and suicide among men who had prostate cancer diagnosed within 1 y to men without any cancer diagnosis. The risks of cardiovascular events and suicide were elevated during the first year after prostate cancer diagnosis, particularly during the first week. Before 1987, the RR of fatal cardiovascular events was 11.2 (95% CI 10.4–12.1) during the first week and 1.9 (95% CI 1.9–2.0) during the first year after diagnosis. From 1987, the RR for cardiovascular events, nonfatal and fatal combined, was 2.8 (95% CI 2.5–3.2) during the first week and 1.3 (95% CI 1.3–1.3) during the first year after diagnosis. While the RR of cardiovascular events declined, the RR of suicide was stable over the entire study period: 8.4 (95% CI 1.9–22.7) during the first week and 2.6 (95% CI 2.1–3.0) during the first year after diagnosis. Men 54 y or younger at cancer diagnosis demonstrated the highest RRs of both cardiovascular events and suicide. A limitation of the present study is the lack of tumor stage data, which precluded possibilities of investigating the potential impact of the disease severity on the relationship between a recent diagnosis of prostate cancer and the risks of cardiovascular events and suicide. In addition, we cannot exclude residual confounding as a possible explanation.
Conclusions
Men newly diagnosed with prostate cancer are at increased risks for cardiovascular events and suicide. Future studies with detailed disease characteristic data are warranted.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
Prostate cancer—a type of tumor that develops in a walnut-sized structure in the male reproductive system—is the commonest cancer (excluding skin cancer) among men in developed countries. In the USA and the UK, for example, one in six men will develop prostate cancer during their lifetime. Most prostate cancers develop in elderly men and, because these tumors usually grow relatively slowly, many men die with prostate cancer rather than as a result of it. Nevertheless, some prostate cancers are fast-growing and aggressive and prostate cancer is the second leading cause of cancer-related death among men. The symptoms of prostate cancer include problems urinating and excessive urination during the night. Nowadays, however, most prostate cancers are detected before they produce any symptoms by measuring the amount of a protein called the prostate-specific antigen (PSA) in the blood.
Why Was This Study Done?
Widespread PSA screening was introduced 20 years ago in the hope that early detection of prostate cancer would save lives. But, although many more prostate cancers are detected nowadays, the number of prostate cancer deaths has not changed significantly. Experts are divided, therefore, about whether the potential benefits of PSA screening outweigh its risks. Treatments for prostate cancer (for example, surgical removal of the prostate) may be more effective if they are started early but they can cause impotence and urinary incontinence, so should men be treated whose cancer might otherwise never affect their health? In addition, receiving a diagnosis of prostate cancer is stressful and there is growing evidence that stressful life events can increase an individual's risk of becoming ill or dying from a heart attack, stroke, or other “cardiovascular” events and of becoming mentally ill. In this study, therefore, the researchers investigate whether men diagnosed with prostate cancer in Sweden have increased risks of cardiovascular events and suicide during the first week and first year after their diagnosis.
What Did the Researchers Do and Find?
The researchers identified nearly 170, 000 men diagnosed with prostate cancer between 1961 and 2004 among Swedish men aged 30 years or older by searching the Swedish Cancer Register. They obtained information on subsequent fatal and nonfatal cardiovascular events and suicides from the Causes of Death Register and the Inpatient Register (in Sweden, everyone has a unique national registration number that facilitates searches of different health-related Registers). Before 1987, men with prostate cancer were about 11 times as likely to have a fatal cardiovascular event during the first week after their diagnosis as men without prostate cancer; during the first year after their diagnosis, men with prostate cancer were nearly twice as likely to have a cardiovascular event as men without prostate cancer (a relative risk of 1.9). From 1987, the relative risk of combined fatal and nonfatal cardiovascular events associated with a diagnosis of prostate cancer was 2.8 during the first week and 1.3 during the first year after diagnosis. The relative risk of suicide associated with a diagnosis of prostate cancer was 8.4 during the first week and 2.6 during the first year after diagnosis throughout the study period. Finally, men younger than 54 years at diagnosis had higher relative risks of both cardiovascular events and suicide.
What Do These Findings Mean?
These findings suggest that men newly diagnosed with prostate cancer have an increased risk of cardiovascular events and suicide. Because there is no information on tumor size or aggressiveness in the Cancer Register, the researchers could not look at the relationship between disease severity and the likelihood of a cardiovascular event or suicide. Furthermore, because of the study design, men who received a diagnosis of prostate cancer may have had additional characteristics in common that contributed to their increased risk of cardiovascular events and suicide. Nevertheless, these findings strongly suggest that the stress of the diagnosis itself rather than any subsequent treatment has deleterious effects on the health of men receiving a diagnosis of prostate cancer. Thus, strategies should be developed to reduce the risks of cardiovascular events and suicide—increased clinical and psychological monitoring—after a diagnosis of prostate cancer, particularly among young men, and this new information should be considered in the ongoing debate about the risks and benefits of PSA screening.
Additional Information
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1000197.
The US National Cancer Institute provides information on all aspects of prostate cancer, (in English and Spanish)
The US Centers for Disease Control and Prevention provides information on prostate cancer, including Prostate Cancer Screening, A Decision Guide (some information in multiple languages)
The UK National Health Service Choices Web site provides detailed information on prostate cancer
The UK-based Samaritans charity provides confidential nonjudgmental emotional support, 24 hours a day, for people who are experiencing feelings of distress or despair, including those which could lead to suicide
Outside the UK, Befrienders provides information on help lines for those experiencing distress
doi:10.1371/journal.pmed.1000197
PMCID: PMC2784954  PMID: 20016838
18.  Online health consultation: Examining uses of an interactive cancer communication tool by low-income women with breast cancer 
Purpose
To examine how psychosocial variables predicted use of an online health consultation service among low-income breast cancer patients and in turn how using this service affected these same psychosocial outcomes.
Method
This retrospective study included 231 recently diagnosed, low-income (at or below 250% of the federal poverty level) breast cancer patients provided a free computer with 16 weeks of access to the Internet-based ‘Ask an Expert’ service offered as part of the Comprehensive Health Enhancement Support System (CHESS) “Living with Breast Cancer” program. The use activity included a total of 502 messages submitted to the online health consultation service. The data included five psychosocial variables: information seeking, social support, health self efficacy, participation in health care, and doctor–patient relationship, were collected at both the pre-test and 16-week post-test after using the service. Correlation tests were conducted to examine the relationship between pre- and post-test, and use activity. A multiple regression model was formed for each of five psychosocial variables to examine how use activity of the consultation service was associated with various psychosocial measurements.
Results
In total, 865 distinct consulting queries from 502 messages were identified as measurement of patients’ use activities (3.74 consulting queries per participant). Use activity had significant negative relationships with pre-test scores across all five psychosocial variables. The regression models found significant positive main effects (use activity) associated with three of these psychosocial variables: health self efficacy, participation in health care and doctor–patient relationship. Use activity of the online consultation service did not have significant relationships with the dependent variables of information seeking and perceived social support.
Conclusion
Low-income breast cancer patients sought out information from an online cancer information expert. Patients with more negative perceptions at pre-test tended to use the service more. Greater use of the service was associated with improvement in patients’ perception of health self-efficacy, participation in health care and doctor–patient relationship. Moreover, use of online health consultation appears to level the differences, narrowing the gaps between those who were worse and better off at pre-test. These findings suggest that online health consultation can serve as an effective complement to other resources, which help low-income, breast cancer patients feel more confident to participate more actively in their health care, become more actively involved in making decisions about their treatments and enhance the relationship with their doctors.
doi:10.1016/j.ijmedinf.2011.03.011
PMCID: PMC3627128  PMID: 21530381
Consultation; Decision support; Communication; Breast cancer; Internet
19.  If We Offer it, Will They Accept? Factors Affecting Patient Use Intentions of Personal Health Records and Secure Messaging 
Background
Personal health records (PHRs) are an important tool for empowering patients and stimulating health action. To date, the volitional adoption of publicly available PHRs by consumers has been low. This may be partly due to patient concerns about issues such as data security, accuracy of the clinical information stored in the PHR, and challenges with keeping the information updated. One potential solution to mitigate concerns about security, accuracy, and updating of information that may accelerate technology adoption is the provision of PHRs by employers where the PHR is pre-populated with patients’ health data. Increasingly, employers and payers are offering this technology to employees as a mechanism for greater patient engagement in health and well-being.
Objective
Little is known about the antecedents of PHR acceptance in the context of an employer sponsored PHR system. Using social cognitive theory as a lens, we theorized and empirically tested how individual factors (patient activation and provider satisfaction) and two environment factors (technology and organization) influence patient intentions to use a PHR among early adopters of the technology. In technology factors, we studied tool empowerment potential and value of tool functionality. In organization factors, we focused on communication tactics deployed by the organization during PHR rollout.
Methods
We conducted cross-sectional analysis of field data collected during the first 3 months post go-live of the deployment of a PHR with secure messaging implemented by the Air Force Medical Service at Elmendorf Air Force Base in Alaska in December 2010. A questionnaire with validated measures was designed and completed by 283 participants. The research model was estimated using moderated multiple regression.
Results
Provider satisfaction, interactions between environmental factors (communication tactics and value of the tool functionality), and interactions between patient activation and tool empowerment potential were significantly (P<.05) associated with behavioral intentions to use the PHR tool. The independent variables collectively explained 42% of the variance in behavioral intentions.
Conclusions
The study demonstrated that individual and environmental factors influence intentions to use the PHR. Patients who were more satisfied with their provider had higher use intentions. For patients who perceived the health care process management support features of the tool to be of significant value, communication tactics served to increase their use intentions. Finally, patients who believed the tool to be empowering demonstrated higher intentions to use, which were further enhanced for highly activated patients. The findings highlight the importance of communication tactics and technology characteristics and have implications for the management of PHR implementations.
doi:10.2196/jmir.2243
PMCID: PMC3636193  PMID: 23470453
personal health record; technology acceptance; secure messaging; patient-centered care; employer sponsored PHR
20.  MyPreventiveCare: implementation and dissemination of an interactive preventive health record in three practice-based research networks serving disadvantaged patients—a randomized cluster trial 
Background
Evidence-based preventive services for early detection of cancer and other health conditions offer profound health benefits, yet Americans receive only half of indicated services. Policy initiatives promote the adoption of information technologies to engage patients in care. We developed a theory-driven interactive preventive health record (IPHR) to engage patients in health promotion. The model defines five levels of functionality: (1) collecting patient information, (2) integrating with electronic health records (EHRs), (3) translating information into lay language, (4) providing individualized, guideline-based clinical recommendations, and (5) facilitating patient action. It is hypothesized that personal health records (PHRs) with these higher levels of functionality will inform and activate patients in ways that simpler PHRs cannot. However, realizing this vision requires both technological advances and effective implementation based upon clinician and practice engagement.
Methods/design
We are starting a two-phase, mixed-method trial to evaluate whether the IPHR is scalable across a large number of practices and how its uptake differs for minority and disadvantaged patients. In phase 1, 40 practices from three practice-based research networks will be randomized to add IPHR functionality to their PHR versus continue to use their existing PHR. Throughout the study, we will engage intervention practices to locally tailor IPHR content and learn how to integrate new functions into their practice workflow. In phase 2, the IPHR to all nonintervention practices to observe whether the IPHR can be implemented more broadly (Scalability). Phase 1 will feature an implementation assessment in intervention practices, based on the RE-AIM model, to measure Reach (creation of IPHR accounts by patients), Adoption (practice decision to use the IPHR), Implementation (consistency, fidelity, barriers, and facilitators of use), and Maintenance (sustained use). The incremental effect of the IPHR on receipt of cancer screening tests and shared decision-making compared to traditional PHRs will assess Effectiveness. In phase 2, we will assess similar outcomes as phase 1 except for effectiveness.
Discussion
This study will yield information about the effectiveness of new health information technologies designed to actively engage patients in their care as well as information about how to effectively implement and disseminate PHRs by engaging clinicians.
Trial registration
ClinicalTrials.gov: NCT02138448
doi:10.1186/s13012-014-0181-1
PMCID: PMC4269965  PMID: 25500097
Health promotion; Information management; Informatics; Primary health care; Patient-centered care
21.  Chronious: the last advances in telehealth monitoring systems 
The effectiveness of treatment depends on the patient’s ability to manage in the everyday life his/her chronic health status in accordance with the medical prescriptions outside the hospital settings. For this reason, the European Commission promotes research in tele-health applications, such as Chronious “An Open, Ubiquitous and Adaptive Chronic Disease Management Platform for COPD and Renal Insufficiency”. The aim is the improvement of healthcare service by offering an online health management solution that addresses the patient-professional interaction, personal data security, reduction of hospitalization and related costs. Chronious implements a modular hardware-software system that integrates existing healthcare legacy system, biomedical sensors, user interfaces and multi-parametric data processing with decision support system for patients and health professionals. Nowadays, very few of chronic disease management tools commercially available are accompanied with patient-professional interfaces for communication and education purposes. As added value, Chronious proposes lifestyle and mental support tools for the patients and ontological cross-lingual information retrieval system for clinicians for faster and easier queries to medical knowledge. The patient at home is equipped with a T-shirt able to record cardiac/respiratory/audio and activity signs, external devices (weight scale, glucometer, blood pressure monitoring device, spirometer, air quality sensor) and a touch-screen computer to send reminders on drugs intake and to collect information on dietary habits and mental status. All information are automatically transmitted via IP/GPRS to the Central System, that using a web-interface and ruled based algorithms allows clinicians to monitor patients status and give suggestions for acting in case of worsening trend or risk situation. As consequence, critical procedures that are quite complicated for the patient such as frequent/continuous monitoring, visits to hospitals, self-care are becoming straightforward and simpler. In addition, the information of the clinician is more direct, accurate and complete improving the prognosis for the chronic diseases and the selection of the most appropriate treatment planning. For validation purposes, Chronious is focused on chronic obstructive pulmonary disease and chronic kidney disease, being these widespread and highly expensive in terms of social and economic costs. The validation protocol considers also the most frequent related comorbidities, such as diabetes, involving the patients category which will take advantage of the highest foreseen benefits. This enables an open architecture for further applications. Project validation is divided in two progressive phases: the first one in hospital setting was aimed to verify on 50 patients if the delivered prototypes met the user requirements, the ergonomic and functional specifications. The second phase has observational features. The improved system is currently applied at home on 60 selected patients. Patients are instructed to use the system independently for an expected duration of 4 months each. In parallel, the patient is monitored with standard periodic outpatient checks. At the end, customer satisfaction and the predictive ability of the system in the evolution of the disease will be evaluated. First feedbacks are encouraging because Chronious monitoring provides friendly approaches to new technologies and reassures patients reducing the intervention time in critical situation.
PMCID: PMC3571130
chronic disease; patient-professional interfaces; lifestyle
22.  Collaborative development of an electronic Personal Health Record for people with severe and enduring mental health problems 
BMC Psychiatry  2014;14(1):305.
Background
Previous attempts to implement electronic Personal Health Records (ePHRs) underline the importance of stakeholder involvement. We describe the development of an ePHR for people with severe and enduring mental health problems, and provide a model of involving stakeholders throughout.
Methods
There were three stages to the development of the ePHR. These were 1) identifying and responding to user and clinical needs; 2) preliminary testing; and 3) preliminary implementation. Stakeholder involvement was pervasive in all stages. We collaborated with 133 stakeholders in the first stage, 13 in the second, and 26 in the third. On the micro-level, a service user researcher conducted much of the data collection and analysis. On the macro-level, a service user advisory group guided decisions throughout the project, and a service user was an active member of the project executive board and the implementation team.
Results
Service users and clinicians preferred an interactive ePHR with features such as access to care plans and care notes, a mood tracker, patient reported outcomes feeding into the clinical record, and social networking features. Many of the above were constructed following consultation with the relevant professionals, however further consultation is required before building a social networking function or providing access to full care notes. Service users positively rated the usability of the ePHR. Drop-in sessions helped service users access technology and learn how to use the ePHR.
Conclusions
We outline four considerations for future developers of ePHRs: appeal, construction, ease of use, and implementation. Success rests on implementation in routine practice, so ePHRs must be intuitive and useful for both service users and staff. Continued involvement of end users throughout the design and testing process can help to achieve this goal.
Electronic supplementary material
The online version of this article (doi:10.1186/s12888-014-0305-9) contains supplementary material, which is available to authorized users.
doi:10.1186/s12888-014-0305-9
PMCID: PMC4245793  PMID: 25403285
Personal health record; ePHR; Shared care; Patient empowerment; eHealth; Psychosis; Computer literacy
23.  Projecting prevalence by stage of care for prostate cancer and estimating future health service needs: protocol for a modelling study 
BMJ Open  2011;1(1):e000104.
Introduction
Current strategies for the management of prostate cancer are inadequate in Australia. We will, in this study, estimate current service needs and project the future needs for prostate cancer patients in Australia.
Methods and analysis
First, we will project the future prevalence of prostate cancer for 2010–2018 using data for 1972–2008 from the New South Wales (NSW) Central Cancer Registry. These projections, based on modelled incidence and survival estimates, will be estimated using PIAMOD (Prevalence, Incidence, Analysis MODel) software. Then the total prevalence will be decomposed into five stages of care: initial care, continued monitoring, recurrence, last year of life and long-term survivor. Finally, data from the NSW Prostate Cancer Care and Outcomes Study, including data on patterns of treatment and associated quality of life, will be used to estimate the type and amount of services that will be needed by prostate cancer patients in each stage of care. In addition, Central Cancer Registry episode data will be used to estimate transition rates from localised or locally advanced prostate cancer to metastatic disease. Medicare and Pharmaceutical Benefits data, linked with Prostate Cancer Care and Outcomes Study data, will be used to complement the Cancer Registry episode data. The methods developed will be applied Australia-wide to obtain national estimates of the future prevalence of prostate cancer for different stages of clinical care.
Ethics and dissemination
This study was approved by the NSW Population and Health Services Research Ethics Committee. Results of the study will be disseminated widely to different interest groups and organisations through a report, conference presentations and peer-reviewed articles.
Article summary
Article focus
To describe the statistical models we will develop to obtain estimates of the future prevalence of prostate cancer in Australia for each stage of clinical care.
To describe how the methods developed will be used to determine:
i. How many prostate cancer patients will need medical attention in the near future, and
ii. What types of services they will need.
Key messages
This study will provide the first Australian estimates of current health service needs and projections of future needs for prostate cancer patients.
This information will be essential for ensuring that men with prostate cancer have adequate access to the different types of care they will require as they move through the disease trajectory.
Strengths and limitations of this study
Strengths
Breakdown of prevalence according to health service needs by patient subgroup
Development and testing of validated statistical methods for use in other settings
Multiple population-based data sources: cancer registry, a patterns of care study and Medicare and Pharmaceutical Benefits data.
Limitations
PIAMOD software has substantial data demands (requiring detailed specially-formatted input data including externally modelled survival estimates)
Numerous decisions are required regarding the best statistical models for incidence and survival
Several assumptions are needed regarding the future trends in incidence and survival.
doi:10.1136/bmjopen-2011-000104
PMCID: PMC3191396  PMID: 22021763
Organisation of health services; epidemiology; public health; statistics & research methods; urological tumours; health service research
24.  Self-report versus Medical Records for Assessing Cancer-Preventive Services Delivery 
Accurate measurement of cancer-preventive behaviors is important for quality improvement, research studies, and public health surveillance. Findings differ, however, depending on whether patient self-report or medical records are used as the data source. We evaluated concordance between patient self-report and medical records on risk factors, cancer screening, and behavioral counseling among primary care patients. Data from patient surveys and medical records were compared from 742 patients in 25 New Jersey primary care practices participating at baseline in SCOPE (supporting colorectal cancer outcomes through participatory enhancements), an intervention trial to improve colorectal cancer screening in primary care offices. Sensitivity, specificity, and rates of agreement describe concordance between self-report and medical records for risk factors (personal or family history of cancer, smoking), cancer screening (breast, cervical, colorectal, prostate), and counseling (cancer screening recommendations, diet or weight loss, exercise, smoking cessation). Rates of agreement ranged from 41% (smoking cessation counseling) to 96% (personal history of cancer). Cancer screening agreement ranged from 61% (Pap and prostate-specific antigen) to 83% (colorectal endoscopy) with self-report rates greater than medical record rates. Counseling was also reported more frequently by self-report (83% by patient self-report versus 34% by medical record for smoking cessation counseling). Deciding which data source to use will depend on the outcome of interest, whether the data is used for clinical decision making, performance tracking, or population surveillance; the availability of resources; and whether a false positive or a false negative is of more concern.
doi:10.1158/1055-9965.EPI-08-0177
PMCID: PMC2962564  PMID: 18990740
25.  Risk Factors and Outcomes for Late Presentation for HIV-Positive Persons in Europe: Results from the Collaboration of Observational HIV Epidemiological Research Europe Study (COHERE) 
PLoS Medicine  2013;10(9):e1001510.
Amanda Mocroft and colleagues investigate risk factors and health outcomes associated with diagnosis at a late stage of infection in individuals across Europe.
Please see later in the article for the Editors' Summary
Background
Few studies have monitored late presentation (LP) of HIV infection over the European continent, including Eastern Europe. Study objectives were to explore the impact of LP on AIDS and mortality.
Methods and Findings
LP was defined in Collaboration of Observational HIV Epidemiological Research Europe (COHERE) as HIV diagnosis with a CD4 count <350/mm3 or an AIDS diagnosis within 6 months of HIV diagnosis among persons presenting for care between 1 January 2000 and 30 June 2011. Logistic regression was used to identify factors associated with LP and Poisson regression to explore the impact on AIDS/death. 84,524 individuals from 23 cohorts in 35 countries contributed data; 45,488 were LP (53.8%). LP was highest in heterosexual males (66.1%), Southern European countries (57.0%), and persons originating from Africa (65.1%). LP decreased from 57.3% in 2000 to 51.7% in 2010/2011 (adjusted odds ratio [aOR] 0.96; 95% CI 0.95–0.97). LP decreased over time in both Central and Northern Europe among homosexual men, and male and female heterosexuals, but increased over time for female heterosexuals and male intravenous drug users (IDUs) from Southern Europe and in male and female IDUs from Eastern Europe. 8,187 AIDS/deaths occurred during 327,003 person-years of follow-up. In the first year after HIV diagnosis, LP was associated with over a 13-fold increased incidence of AIDS/death in Southern Europe (adjusted incidence rate ratio [aIRR] 13.02; 95% CI 8.19–20.70) and over a 6-fold increased rate in Eastern Europe (aIRR 6.64; 95% CI 3.55–12.43).
Conclusions
LP has decreased over time across Europe, but remains a significant issue in the region in all HIV exposure groups. LP increased in male IDUs and female heterosexuals from Southern Europe and IDUs in Eastern Europe. LP was associated with an increased rate of AIDS/deaths, particularly in the first year after HIV diagnosis, with significant variation across Europe. Earlier and more widespread testing, timely referrals after testing positive, and improved retention in care strategies are required to further reduce the incidence of LP.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
Every year about 2.5 million people become newly infected with HIV, the virus that causes AIDS. HIV can be transmitted through unprotected sex with an infected partner, from an HIV-positive mother to her unborn baby, or through injection of drugs. Most people do not become ill immediately after infection with HIV although some develop a short influenza-like illness. The next stage of the HIV infection, which may last up to 10 years, also has no major symptoms but, during this stage, HIV slowly destroys immune system cells, including CD4 cells, a type of lymphocyte. Eventually, when the immune system is unable to fight off infections by other disease-causing organisms, HIV-positive people develop AIDS-defining conditions—unusual viral, bacterial, and fungal infections and unusual tumors. Progression to AIDS occurs when any severe AIDS-defining condition is diagnosed, when the CD4 count in the blood falls below 200 cells/mm3, or when CD4 cells account for fewer than 15% of lymphocytes.
Why Was This Study Done?
People need to know they are HIV positive as soon as possible after they become infected because antiretroviral therapy, which controls but does not cure HIV infection, works best if it is initiated when people still have a relatively high CD4 count. Early diagnosis also reduces the risk of onward HIV transmission. However, 40%–60% of HIV-positive individuals in developed countries are not diagnosed until they have a low CD4 count or an AIDS-defining illness. Reasons for such late presentation include fear of discrimination or stigmatization, limited knowledge about HIV risk factors, testing, and treatment together with missed opportunities to offer an HIV test. Policy makers involved in national and international HIV control programs need detailed information about patterns of late presentation before they can make informed decisions about how to reduce this problem. In this study, therefore, the researchers use data collected by the Collaboration of Observational HIV Epidemiological Research in Europe (COHERE) to analyze trends in late presentation over time across Europe and in different groups of people at risk of HIV infection and to investigate the clinical consequences of late presentation.
What Did the Researchers Do and Find?
The researchers analyzed data collected from 84,524 individuals participating in more than 20 observational studies that were undertaken in 35 European countries and that investigated outcomes among HIV-positive people. Nearly 54% of the participants were late presenters—individuals who had a CD4 count of less than 350 cells/mm3 or an AIDS-defining illness within 6 months of HIV diagnosis. Late presentation was highest among heterosexual males, in Southern European countries, and among people originating in Africa. Overall, late presentation decreased from 57.3% in 2000 to 51.7% in 2010/11. However, whereas late presentation decreased over time among men having sex with men in Central and Northern Europe, for example, it increased over time among female heterosexuals in Southern Europe. Finally, among the 8,000 individuals who developed a new AIDS-defining illness or died during follow-up, compared to non-late presentation, late presentation was associated with an increased incidence of AIDS/death in all regions of Europe during the first and second year after HIV diagnosis (but not in later years); the largest increase in incidence (13-fold) occurred during the first year after diagnosis in Southern Europe.
What Do These Findings Mean?
These findings indicate that, although late presentation with HIV infection has decreased in recent years, it remains an important issue across Europe and in all groups of people at risk of HIV infection. They also show that individuals presenting late have a worse clinical outlook, particularly in the first and second year after diagnosis compared to non-late presenters. Several aspects of the study design may affect the accuracy and usefulness of these findings, however. For example, some of the study participants recorded as late presenters may have been people who were aware of their HIV status but who chose not to seek care for HIV infection, or may have been seen in the health care system prior to HIV diagnosis without being offered an HIV test. Delayed entry into care and late presentation are likely to have different risk factors, a possibility that needs to be studied further. Despite this and other study limitations, these findings nevertheless suggest that HIV testing strategies that encourage early testing in all populations at risk, that ensure timely referrals, and that improve retention in care are required to further reduce the incidence of late presentation with HIV infection in Europe.
Additional Information
Please access these websites via the online version of this summary at http://dx.doi.org/ 10.1371/journal.pmed.1001510.
Information is available from the US National Institute of Allergy and infectious diseases on HIV infection and AIDS
NAM/aidsmap provides basic information about HIV/AIDS, and summaries of recent research findings on HIV care and treatment
Information is available from Avert, an international AIDS charity, on many aspects of HIV/AIDS, including detailed information on the stages of HIV infection and on HIV and AIDS in Europe (in English and Spanish)
The HIV in Europe Initiative has information about strategies to improve earlier diagnosis and access to care in Europe
Information about COHERE, which was established in 2005 to conduct epidemiological research on the prognosis and outcome of HIV-infected people from across Europe, is available; more information on the consensus definition of late presentation used in this study is available through the HIV in Europe initiative
Patient stories about living with HIV/AIDS are available through Avert and through the nonprofit website Healthtalkonline
doi:10.1371/journal.pmed.1001510
PMCID: PMC3796947  PMID: 24137103

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