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1.  Informed palliative care in nursing homes through the interRAI Palliative Care instrument: a study protocol based on the Medical Research Council framework 
BMC Geriatrics  2014;14(1):132.
Background
Nursing homes are important locations for palliative care. Through comprehensive geriatric assessments (CGAs), evaluations can be made of palliative care needs of nursing home residents. The interRAI Palliative Care instrument (interRAI PC) is a CGA that evaluates diverse palliative care needs of adults in all healthcare settings. The evaluation results in Client Assessment Protocols (CAPs: indications of problems that need addressing) and Scales (e.g. Palliative Index for Mortality (PIM)) which can be used to design, evaluate and adjust care plans. This study aims to examine the effect of using the interRAI PC on the quality of palliative care in nursing homes. Additionally, it aims to evaluate the feasibility and validity of the interRAI PC.
Methods
This study covers phases 0, I and II of the Medical Research Council (MRC) framework for designing and evaluating complex interventions, with a longitudinal, quasi-experimental pretest-posttest design and with mixed methods of evaluation. In phase 0, a systematic literature search is conducted. In phase I, the interRAI PC is adapted for use in Belgium and implemented on the BelRAI-website and a practical training is developed. In phase II, the intervention is tested in fifteen nursing homes. Participating nursing homes fill out the interRAI PC during one year for all residents receiving palliative care. Using a pretest-posttest design with quasi-random assignment to the intervention or control group, the effect of the interRAI PC on the quality of palliative care is evaluated with the Palliative care Outcome Scale (POS). Psychometric analysis is conducted to evaluate the predictive validity of the PIM and the convergent validity of the CAP ‘Mood’ of the interRAI PC. Qualitative data regarding the usability and face validity of the instrument are collected through focus groups, interviews and field notes.
Discussion
This is the first study to evaluate the validity and effect of the interRAI PC in nursing homes, following a methodology based on the MRC framework. This approach improves the study design and implementation and will contribute to a higher generalizability of results. The final result will be a psychometrically evaluated CGA for nursing home residents receiving palliative care.
Trial registration
ClinicalTrials.gov NCT02281032. Registered October 30th, 2014.
doi:10.1186/1471-2318-14-132
PMCID: PMC4280705  PMID: 25479633
Palliative care; Nursing homes; Comprehensive geriatric assessment; interRAI Palliative Care instrument; Older adults; Study protocol
2.  Making progress: the role of cancer councils in Australia in indigenous cancer control 
BMC Public Health  2014;14:347.
Background
Indigenous Australians have poorer outcomes from cancer for a variety of reasons including poorer participation in screening programs, later diagnosis, higher rates of cancer with poor prognosis and poorer uptake and completion of treatment. Cancer prevention and support for people with cancer is part of the core business of the State and Territory Cancer Councils. To support sharing of lessons learned, this paper reports an environmental scan undertaken in 2010 in cancer councils (CCs) nationwide that aimed to support Indigenous cancer control.
Methods
The methods replicated the approach used in a 2006 environmental scan of Indigenous related activity in CCs. The Chief Executive Officer of each CC nominated individuals for interview. Interviews explored staffing, projects, programs and activities to progress cancer control issues for Indigenous Australians, through phone or face-to-face interviews. Reported initiatives were tabulated using predetermined categories of activity and summaries were returned to interviewees, the Aboriginal and Torres Strait Islander Subcommittee and Chief Executive Officers for verification.
Results
All CCs participated and modest increases in activity had occurred in most states since 2006 through different means. Indigenous staff numbers were low and no Indigenous person had yet been employed in smaller CCs; no CC had an Indigenous Board member and efforts at capacity building were often directed outside of the organisation. Developing partnerships with Indigenous organisations were ongoing. Acknowledgement and specific mention of Indigenous people in policy was increasing. Momentum increased following the establishment of a national subcommittee which increased the profile of Indigenous issues and provided collegial and practical support for those committed to reducing Indigenous cancer disparities. Government funding of “Closing the Gap” and research in the larger CCs have been other avenues for increasing knowledge and activity in Indigenous cancer control.
Conclusions
This environmental scan measured progress, allowed sharing of information and provided critical assessment of progress across areas of importance for increasing Indigenous cancer control. Structured examination of policies, institutional support systems, programs and interventions is a useful means of highlighting opportunities for progress with minority groups relevant for many organisations. Progress has occurred with momentum likely to increase in the future and benefit from commitment to long-term monitoring and sharing of achievements.
doi:10.1186/1471-2458-14-347
PMCID: PMC4004461  PMID: 24725974
Cancer; Aboriginal; Indigenous; Environmental scan; Delivery of health care/*organization & administration; Health services accessibility; Neoplasms/*prevention & control
3.  Professional Practice Plans: Recommendations from the 2005 Council of Faculties-Council of Deans Task Force 
Objectives
Determine the degree to which AACP member schools have established professional practice plans, characterize the nature of existing practice plans, and provide recommendations on the implementation of practice plans at AACP member schools.
Design
Survey of CEO Deans of AACP member institutions administered via online survey instrument.
Results
Sixty-five schools responded, with 29 (45%) indicating that they had an active practice plan in place. Fifty-two percent of those who do no have practice plans in place anticipate having plans established within three years. A variety of revenue sources are addressed by existing practice plans including sponsored research, patient care, educational activities and consulting.
Conclusions
Academic pharmacy lacks sophistication in regards to developing comprehensive professional practice plans. Colleges of pharmacy should consider differentiating plans that address monies collected from sponsored research vs. professional services. AACP should continue to monitor this topic as increasing participation by member schools is expected.
PMCID: PMC1636951  PMID: 17136167
practice plans; faculty consulting; clinical services; faculty-generated revenue
4.  Associations between Mode of HIV Testing and Consent, Confidentiality, and Referral: A Comparative Analysis in Four African Countries 
PLoS Medicine  2012;9(10):e1001329.
A study carried out by Carla Obermeyer and colleagues examines whether practices regarding consent, confidentiality, and referral vary depending on whether HIV testing is provided through voluntary counseling and testing or provider-initiated testing.
Background
Recommendations about scaling up HIV testing and counseling highlight the need to provide key services and to protect clients' rights, but it is unclear to what extent different modes of testing differ in this respect. This paper examines whether practices regarding consent, confidentiality, and referral vary depending on whether testing is provided through voluntary counseling and testing (VCT) or provider-initiated testing.
Methods and Findings
The MATCH (Multi-Country African Testing and Counseling for HIV) study was carried out in Burkina Faso, Kenya, Malawi, and Uganda. Surveys were conducted at selected facilities. We defined eight outcome measures related to pre- and post-test counseling, consent, confidentiality, satisfactory interactions with providers, and (for HIV-positive respondents) referral for care. These were compared across three types of facilities: integrated facilities, where testing is provided along with medical care; stand-alone VCT facilities; and prevention of mother-to-child transmission (PMTCT) facilities, where testing is part of PMTCT services. Tests of bivariate associations and modified Poisson regression were used to assess significance and estimate the unadjusted and adjusted associations between modes of testing and outcome measures. In total, 2,116 respondents tested in 2007 or later reported on their testing experience. High percentages of clients across countries and modes of testing reported receiving recommended services and being satisfied. In the unadjusted analyses, integrated testers were less likely to meet with a counselor before testing (83% compared with 95% of VCT testers; p<0.001), but those who had a pre-test meeting were more likely to have completed consent procedures (89% compared with 83% among VCT testers; p<0.001) and pre-test counseling (78% compared with 73% among VCT testers; p = 0.015). Both integrated and PMTCT testers were more likely to receive complete post-test counseling than were VCT testers (59% among both PMTCT and integrated testers compared with 36% among VCT testers; p<0.001). Adjusted analyses by country show few significant differences by mode of testing: only lower satisfaction among integrated testers in Burkina Faso and Uganda, and lower frequency of referral among PMTCT testers in Malawi. Adjusted analyses of pooled data across countries show a higher likelihood of pre-test meeting for those testing at VCT facilities (adjusted prevalence ratio: 1.22, 95% CI: 1.07–1.38) and higher satisfaction for stand-alone VCT facilities (adjusted prevalence ratio: 1.15; 95% CI: 1.06–1.25), compared to integrated testing, but no other associations were statistically significant.
Conclusions
Overall, in this study most respondents reported favorable outcomes for consent, confidentiality, and referral. Provider-initiated ways of delivering testing and counseling do not appear to be associated with less favorable outcomes for clients than traditional, client-initiated VCT, suggesting that testing can be scaled up through multiple modes without detriment to clients' rights.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
In 2007, World Health Organization (WHO) and the Joint United Nations Programme on HIV/AIDS (UNAIDS) issued a joint guidance document on “provider-initiated” HIV testing and counseling. They noted that previous testing strategies that relied on “client-initiated” testing (also referred to as VCT, for voluntary counseling and testing) had failed to reach enough people, both in high-income and resource-constrained countries—in Africa, for example, at that time, just 12% of men and 10% of women had ever been tested. They argued that many opportunities to diagnose and counsel people that visit health facilities for other reasons are being missed, and that provider-initiated HIV testing and counseling can help expand access to HIV treatment, care, and support. They made it clear, however, that mandatory testing is not acceptable. All provider-initiated testing must therefore give individuals the option to not be tested. In addition, the guidelines stressed that all testing must continue to observe “the three Cs” (informed consent, counseling, and confidentiality) and be accompanied by an “enabling environment” including the availability of antiretroviral therapy, prevention and support services, and a supportive social, policy, and legal framework. A number of advocates have subsequently criticized the guidelines for failing to recognize that health-care services and staff in some countries do not always observe the three Cs. Critics have also questioned the appropriateness of the strategy for settings where antiretroviral therapy is not always available or where stigma and discrimination remain widespread.
Why Was This Study Done?
To inform the debate surrounding scale-up of HIV testing in general and provider-initiated testing in particular with data on “real-life” testing, researchers have since carried out a number of studies. One of them, called MATCH (for Multi-Country African Testing and Counseling for HIV), was designed to allow systematic comparisons across African countries of different ways of HIV testing. Its goal was to investigate the uptake of testing, to analyze differences in the experience of testing across countries and modes of testing, and to use the results to devise better strategies to increase knowledge of HIV status and referral to care. MATCH used different means to collect information, including surveys and interviews. People from Burkina Faso, Kenya, Malawi, and Uganda participated. Some had undergone HIV testing, others had not. This study used a subset of the survey data collected for the MATCH study and asked whether there were systematic differences depending on the type of testing people had experienced.
What Did the Researchers Do and Find?
The data the researchers used were from 2,116 people who had undergone testing in the two previous years at different facilities in the four countries. The different facilities were grouped into three “modes” of testing: VCT-only testing, integrated testing (which included hospitals and other medical facilities where provider-initiated and client-initiated testing were both available, along with other medical services), and prevention of mother-to-child transmission (PMTCT) testing at medical facilities offering services to pregnant women. Analyzing the survey responses, the researchers categorized them as related to eight different “outcomes”: pre-test meeting, pre-test counseling, consent, confidentiality, satisfaction with the person-to-person interactions, post-test meeting to receive results, post-test counseling, and referral to care.
They found that across countries and different facilities, the majority of participants reported having received most of the testing-related services. More than 90% reported having a pre-test meeting, and around 80% were satisfied with the personal interactions, with the consent process, and with confidentiality. About 50% of participants reported receiving all post-test services, and 71% of those who had tested positive for HIV reported appropriate referral to care.
When they looked for differences between different modes of testing, the researchers found that while they existed, they did not consistently favor one mode over another. Some outcomes scored higher in VCT facilities, some in PMTCT facilities, and some in integrated facilities.
What Do These Findings Mean?
While there is room for improvement in HIV testing services (especially post-test services) across the countries and facilities included, the study did not reveal major problems with consent or confidentiality. The results also suggest that services at PMTCT and integrated facilities are not any worse than those at VCT-only sites. It seems therefore reasonable to continue expanding access to HIV testing and to include all facilities in the scale-up. That said, this is only one of a number of studies examining issues surrounding HIV testing, and decisions should be based on all available evidence. The results here are consistent with some of the other studies, but there are also reports that counseling might become neglected as testing is scaled up, and that offering testing routinely at every doctor's visit makes it seem mandatory even if there is the possibility to “opt out.” Other analyses of the MATCH study use in-depth interviews to understand in more detail the feelings, experiences, and attitudes of participants who have been tested as well as those who have not been tested. It will be important to see whether their results are consistent with the ones here, which are based on a survey of people who have been tested.
Additional Information
Please access these websites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001329.
WHO has published a toolkit for scaling up HIV testing and counseling services in resource-limited settings, as well as the report Service Delivery Approaches to HIV Testing and Counselling (HSC): A Strategic HTC Programme Framework
In response to reactions to the 2007 joint WHO/UNAIDS guidelines Guidance on Provider-Initiated HIV Testing and Counselling in Health Facilities, the UNAIDS Reference Group on HIV and Human Rights issued a Statement and Recommendations on Scaling up HIV Testing and Counselling
The NAM/aidsmap website has a section on HIV testing policies and guidelines.
doi:10.1371/journal.pmed.1001329
PMCID: PMC3479110  PMID: 23109914
5.  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
6.  Legal aspects with regard to integrated care: a long way to go 
Introduction
The main purpose of this abstract is to raise awareness of the unsatisfactory legal situation with regard to integrated care. The abstract focuses on two major legal issues. First, I picture the actual legal situation regarding cross-border healthcare. Secondly, I describe the duties care providers and patients may face when entering into integrated care programs.
Cross-border healthcare
Currently, we lack an European legislative framework that regulates cross-border healthcare. One reason for this fact is that Article 152 EC treaty states that “Community Action in the field of public health shall fully respect the responsibilities of the Member States for the organisation and delivery of health services and medical care” [1]. Therefore, it's up to each Member State to provide regulations with regard to cross-border healthcare services. Hence, patients need to deal with various national—often inconsistent—provisions when considering consuming cross-border healthcare. As a consequence, patients easily felt overstrained and the unclear legal situation prevents them from crossing a border to obtain healthcare. This often averts the establishment of integrated care models. As a result, patients lose the opportunity to receive more or different healthcare services and products in Member States other than the State in which they are living or are insured.
Nevertheless, it was the European Court of Justice (ECJ) with its continuous rulings in respect to cross-border healthcare that started with the harmonization process of cross-border healthcare legislation. The ECJ judges have ruled that freedom to cross EU borders for the best and quickest treatment is a right for all [2]. However, litigation before the ECJ suffers from deficiencies in this respect. In particular, the case law of the ECJ on the issue clearly shows the unsatisfactory nature of case-by-case ex post procedures for a complex and developing policy area. Further, litigation always leads to a winner and a loser, but does not foster an iterative, deliberate process in which the optimal accommodation of all affected interests is reached because the ECJ always decides on a particular case [3]. As a consequence, the European Commission has presented a proposal for a directive on the application of patient's rights in cross-border healthcare which reflects the decisions of the ECJ [4]. The aim of the proposed directive is—expressed in simplified terms—to ensure and to clarify the conditions for exercising patient's right to cross-border healthcare, and to create a framework for increasing cooperation between Member States. The proposal directive covers cross-border healthcare irrespective of how it is organised, financed or provided and whether it is private or public. The outcome of the proposed directive would be the reduction of obstacles faced when crossing the border in order to obtain healthcare. In case the proposed directive will be approved and will come into force, a major step in order to enlarge the possibilities to achieve integrated care is done. However, the Member States (e.g. Austria) take a critical stance towards the proposed directive and no one currently knows whether it will ever be approved [5].
The actor's duties with respect to integrated care programs
Entering into an integrated care program leads to legal challenges with regard to the actors. In particular, the question which duties are faced when entering into an integrated care program has not been raised yet. Therefore, patients find themselves in situations with a deficit of information and do not see the legal consequences when entering into an integrated care program. Patients often do not realise that they conclude an agreement with a health insurance company. They bind themselves for a certain period (sometimes several years) and they are contractually not allowed to rescind from the agreement. In general, integrated care programs offered from health insurance companies oblige the patient to consult the healthcare providers that are covered from the agreement. As a consequence, in case patients are not satisfied with the healthcare provider because of medical or personal reasons, no change to another healthcare provider is possible. Further, patients always enter into an implied health treatment agreement with the healthcare provider. In turn, healthcare providers do not have any certainties to be appointed from health insurance companies and, therefore, may lose essential revenues. In addition, healthcare providers are obliged to fulfil certain requirements (technical and organisational) in order to be appointed. In case they are not able anymore to continuously fulfil these requirements, health insurance companies may rescind their contracts. Having these issues in mind, one can assume that entering into an integrated care program implies various—often unseen—duties from different perspectives.
Conclusion
At a glance, the legal background of integrated care still raises a lot of unsolved problems both on a national and on a European level. As a next step, legal uncertainties should be made transparent in order to give the actors the possibility to discuss them. A consequence of this public discussion would be a cornerstone for more consumer-friendly healthcare models that would lead to better patient treatment and would enhance integrated healthcare.
PMCID: PMC2807115
cross-border healthcare; legislation; European Court of Justice; patient's rights; legal duties; integrated care program
7.  Involvement of consumers in studies run by the Medical Research Council Clinical Trials Unit: Results of a survey 
Trials  2012;13:9.
Background
We aimed to establish levels of consumer involvement in randomised controlled trials (RCTs), meta-analyses and other studies carried out by the UK Medical Research Council (MRC) Clinical Trials Unit across the range of research programs, predominantly in cancer and HIV.
Methods
Staff responsible for studies that were included in a Unit Progress Report (MRC CTU, April 2009) were asked to complete a semi-structured questionnaire survey regarding consumer involvement. This was defined as active involvement of consumers as partners in the research process and not as subjects of that research. The electronic questionnaires combined open and closed questions, intended to capture quantitative and qualitative information on whether studies had involved consumers; types of activities undertaken; recruitment and support; advantages and disadvantages of involvement and its perceived impact on aspects of the research.
Results
Between October 2009 and April 2010, 138 completed questionnaires (86%) were returned. Studies had been conducted over a 20 year period from 1989, and around half were in cancer; 30% in HIV and 20% were in other disease areas including arthritis, tuberculosis and blood transfusion medicine. Forty-three studies (31%) had some consumer involvement, most commonly as members of trial management groups (TMG) [88%]. A number of positive impacts on both the research and the researcher were identified. Researchers generally felt involvement was worthwhile and some felt that consumer involvement had improved the credibility of the research. Benefits in design and quality, trial recruitment, dissemination and decision making were also perceived. Researchers felt they learned from consumer involvement, albeit that there were some barriers.
Conclusions
Whilst most researchers identified benefits of involving consumers, most of studies included in the survey had no involvement. Information from this survey will inform the development of a unit policy on consumer involvement, to guide future research conducted within the MRC Clinical Trials Unit and beyond.
doi:10.1186/1745-6215-13-9
PMCID: PMC3398265  PMID: 22243649
Public and patient involvement; consumer involvement; clinical trials; systematic reviews; RCTs
8.  An investigation of whether factors associated with short-term attrition change or persist over ten years: data from the Medical Research Council Cognitive Function and Ageing Study (MRC CFAS) 
BMC Public Health  2006;6:185.
Background
Factors associated with the loss of participants in long-term longitudinal studies of ageing, due to refusal or moves, have been discussed less than those with short term follow-up.
Methods
In a population-based study of cognition and ageing (the Medical Research Council Cognitive Function and Ageing Study (MRC CFAS)), factors associated with dropout due to refusal and moving in the first follow-up period (over two years) are compared with factors associated with dropout over ten years. Participants at 10-year follow-up are compared with their age-standardised baseline contemporaries.
Results
Some consistent trends are found over the longer term. Refusers tended to have poorer cognition, less years of education, not have a family history of dementia and be women. Characteristics of people who moved differed between waves, but the oldest and people in worse health moved more. When surviving and responding individuals at ten years are compared with those of the same age at baseline many differences are found. Individuals of lower social class, education, cognitive ability, in residential care, with sight/hearing problems and poor/fair self-reported health are less likely to be seen after 10 years of follow-up. Individuals report more health problems when they participate in multiple interviews.
Conclusion
The characteristics of refusers in the longer term are similar to those refusing to participate over the shorter term. Long-term follow-up studies will under represent the disadvantaged and disabled but represent full health status of participating individuals better. There are advantages and disadvantages to both short-term and long-term follow-up.
doi:10.1186/1471-2458-6-185
PMCID: PMC1538586  PMID: 16848886
9.  Why the Medical Research Council refused Robert Edwards and Patrick Steptoe support for research on human conception in 1971 
Human Reproduction (Oxford, England)  2010;25(9):2157-2174.
BACKGROUND
In 1971, Cambridge physiologist Robert Edwards and Oldham gynaecologist Patrick Steptoe applied to the UK Medical Research Council (MRC) for long-term support for a programme of scientific and clinical ‘Studies on Human Reproduction’. The MRC, then the major British funder of medical research, declined support on ethical grounds and maintained this policy throughout the 1970s. The work continued with private money, leading to the birth of Louise Brown in 1978 and transforming research in obstetrics, gynaecology and human embryology.
METHODS
The MRC decision has been criticized, but the processes by which it was reached have yet to be explored. Here, we present an archive-based analysis of the MRC decision.
RESULTS
We find evidence of initial support for Edwards and Steptoe, including from within the MRC, which invited the applicants to join its new directly funded Clinical Research Centre at Northwick Park Hospital. They declined the offer, preferring long-term grant support at the University of Cambridge, and so exposed the project to competitive funding mode. Referees and the Clinical Research Board saw the institutional set-up in Cambridge as problematic with respect to clinical facilities and patient management; gave infertility a low priority compared with population control; assessed interventions as purely experimental rather than potential treatments, and so set the bar for safety high; feared fatal abnormalities and so wanted primate experiments first; and were antagonized by the applicants’ high media profile. The rejection set MRC policy on IVF for 8 years, until, after the birth of just two healthy babies, the Council rapidly converted to enthusiastic support.
CONCLUSIONS
This analysis enriches our view of a crucial decision, highlights institutional opportunities and constraints and provides insight into the then dominant attitudes of reproductive scientists and clinicians towards human conception research.
doi:10.1093/humrep/deq155
PMCID: PMC2922998  PMID: 20657027
Robert Edwards; funding; history; human conception; IVF; Medical Research Council; Patrick Steptoe
10.  Measuring client experiences in long-term care in the Netherlands: a pilot study with the Consumer Quality Index Long-term Care 
Background
This study aims to describe the development, testing and optimization of a new standard instrument, the Consumer Quality Index (CQ-index®) Long-term Care, for measuring client experiences with long-term care in the Netherlands.
Methods
Three versions of the CQ-index questionnaires and protocols for study sampling and data collection were developed, designed for interviews with residents of nursing or residential care homes and postal surveys among representatives of psychogeriatric residents and homecare clients. From July to November 2006 a pilot study was conducted among 2,697 clients of 68 nursing or residential care homes, 2,164 representatives of clients in 57 psychogeriatric care institutions, and 1,462 clients of 19 homecare organizations. We performed psychometric analyses and descriptive analyses, and evaluated the pilot study.
Results
The pilot study showed the feasibility and usability of the instruments, supported the multidimensionality of the questionnaires and showed first findings on client experiences and possibilities for quality improvement. Nine scales applied to all care settings: shared decision making, attitude and courtesy, information, body care, competence and safety of care, activities, autonomy, mental well-being, and availability of personnel. The pilot resulted in three optimized questionnaires and recommendations for nationwide implementation.
Conclusions
The CQ-index® Long-term Care provides a good basis to investigate the quality of nursing homes, residential care homes and homecare from the clients' perspective. This standardized instrument enables a nationwide comparison of the quality of long-term care for the purpose of transparency and quality assurance.
doi:10.1186/1472-6963-10-95
PMCID: PMC2907762  PMID: 20384989
11.  Reproductive rights and options available to women infected with HIV in Ghana: perspectives of service providers from three Ghanaian health facilities 
BMC Women's Health  2013;13:13.
Background
Owing to improved management of HIV and its associated opportunistic infections, many HIV-positive persons of reproductive age are choosing to exercise their right of parenthood. This study explored the knowledge of health workers from two Ghanaian districts on the reproductive rights and options available to HIV-positive women who wish to conceive.
Methods
Facility-based cross-sectional in design, the study involved the entire population of nurse counselors (32) and medical officers (3) who provide counseling and testing services to clients infected with HIV. Both structured and in-depth interviews were conducted after informed consent.
Results
Two main perspectives were revealed. There was an overwhelmingly high level of approbation by the providers on HIV-positive women’s right to reproduction (94.3%). At the same time, the providers demonstrated a lack of knowledge regarding the various reproductive options available to women infected with HIV. Site of facility, and being younger were associated with practices that violated client’s right to contraceptive counseling (p < 0.05) in each case. Some of the providers openly expressed their inability to give qualified guidance to HIV-positive women on the various reproductive options.
Conclusions
Taken together, these findings suggest that many HIV-positive clients do not receive comprehensive information about their reproductive options. These findings highlight some of the problems that service providers face as HIV counselors. Both service providers and policy makers need to recognize these realities and incorporate reproductive health issues of HIV-persons into the existing guidelines.
doi:10.1186/1472-6874-13-13
PMCID: PMC3605156  PMID: 23496943
12.  Adult advanced cardiac life support: the European Resuscitation Council guidelines 1992 (abridged). European Resuscitation Council Working Party. 
BMJ : British Medical Journal  1993;306(6892):1589-1593.
The European Resuscitation Council, established in 1990, is committed to saving lives by improving standards of cardiopulmonary resuscitation across Europe and coordinating the activities of interested organisations and individuals. In this regard the council has successfully brought together physicians and surgeons from eastern and western Europe and, in addition, has established relations with the American Heart Association and equivalent organisations in Canada, Australia, and South Africa. A main objective of the European Resuscitation Council is to produce guidelines for cardiopulmonary and cerebral resuscitation, and in this paper members of a working party of 14 experts from 11 countries set out an abridged version of the council's guidelines for adult advanced cardiac life support. The council hopes that the guidelines and accompanying algorithms will serve as a ready use "how to do it" for ordinary practitioners and paramedics inside and outside hospital.
Images
PMCID: PMC1677983  PMID: 8329924
13.  Evaluation of primary care midwifery in the Netherlands: design and rationale of a dynamic cohort study (DELIVER) 
Background
In the Netherlands, midwives are autonomous medical practitioners and 78% of pregnant women start their maternity care with a primary care midwife. Scientific research to support evidence-based practice in primary care midwifery in the Netherlands has been sparse. This paper describes the research design and methodology of the multicenter multidisciplinary prospective DELIVER study which is the first large-scale study evaluating the quality and provision of primary midwifery care.
Methods/Design
Between September 2009 and April 2011, data were collected from clients and their partners, midwives and other healthcare professionals across the Netherlands. Clients from twenty midwifery practices received up to three questionnaires to assess the expectations and experiences of clients (e.g. quality of care, prenatal screening, emotions, health, and lifestyle). These client data were linked to data from the Netherlands Perinatal Register and electronic client records kept by midwives. Midwives and practice assistants from the twenty participating practices recorded work-related activities in a diary for one week, to assess workload. Besides, the midwives were asked to complete a questionnaire, to gain insight into collaboration of midwives with other care providers, their tasks and attitude towards their job, and the quality of the care they provide. Another questionnaire was sent to all Dutch midwifery practices which reveals information regarding the organisation of midwifery practices, provision of preconception care, collaboration with other care providers, and provision of care to ethnic minorities. Data at client, midwife and practice level can be linked. Additionally, partners of pregnant women and other care providers were asked about their expectations and experiences regarding the care delivered by midwives and in six practices client consults were videotaped to objectively assess daily practice.
Discussion
In total, 7685 clients completed at least one questionnaire, 136 midwives and assistants completed a diary with work-related activities (response 100%), 99 midwives completed a questionnaire (92%), and 319 practices across the country completed a questionnaire (61%), 30 partners of clients participated in focus groups, 21 other care providers were interviewed and 305 consults at six midwifery practices were videotaped.
The multicenter DELIVER study provides an extensive database with national representative data on the quality of primary care midwifery in the Netherlands. This study will support evidence-based practice in primary care midwifery in the Netherlands and contribute to a better understanding of the maternity care system.
doi:10.1186/1472-6963-12-69
PMCID: PMC3331850  PMID: 22433820
14.  Homeopathy – what are the active ingredients? An exploratory study using the UK Medical Research Council's framework for the evaluation of complex interventions 
Background
Research in homeopathy has traditionally addressed itself to defining the effectiveness of homeopathic potencies in comparison to placebo medication. There is now increasing awareness that the homeopathic consultation is in itself a therapeutic intervention working independently or synergistically with the prescribed remedy. Our objective was to identify and evalute potential "active ingredients" of the homeopathic approach as a whole, in a prospective formal case series, which draws on actual consultation data, and is based on the MRC framework for the evaluation of complex interventions.
Methods
Following on from a theoretical review of how homeopathic care might mediate its effects, 18 patients were prospectively recruited to a case series based at Bristol Homeopathic Hospital. Patients, who lived with one of three index conditions, were interviewed before and after a five visit "package of care". All consultations were recorded and transcribed verbatim. Additional data, including generic and condition-specific questionnaires, artwork and "significant other" reports were collected. Textual data was subject to thematic analysis and triangulated with other sources.
Results
We judged that around one third of patients had experienced a major improvement in their health over the study period, a third had some improvement and a third had no improvement. Putative active ingredients included the patients' "openness to the mind-body connection", consultational empathy, in-depth enquiry into bodily complaints, disclosure, the remedy matching process and, potentially, the homeopathic remedies themselves.
Conclusion
This study has has identified, using primary consultation and other data, a range of factors that might account for the effectiveness of homeopathic care. Some of these, such as empathy, are non-specific. Others, such as the remedy matching process, are specific to homeopathy. These findings counsel against the use of placebo-controlled RCT designs in which both arms would potentially be receiving specific active ingredients. Future research in homeopathy should focus on pragmatic trials and seek to confirm or refute the therapeutic role of constructs such as patient "openness", disclosure and homeopathicity.
doi:10.1186/1472-6882-6-37
PMCID: PMC1676018  PMID: 17101037
15.  Costs of day hospital and community residential chemical dependency treatment 
Background
Evidence suggests that expensive hospital-based inpatient chemical dependency programs do not deliver outcomes that are superior to less costly day hospital programs, but patient placement criteria developed by the Addiction Society of Medicine (ASAM) nonetheless have identified a need for low-intensity residential treatment for patients with higher levels of severity. Community-based residential programs may represent a low-cost inpatient alternative that satisfies the ASAM criteria, but research is lacking in this area. A recent clinical trial has found similar outcomes at social model residential treatment and clinically-oriented day hospital programs, but did not report on the costs associated with treatment in that study.
Aims
This paper addresses whether the similar outcomes in the recent trial were delivered with comparable costs. It also studies costs separately for men and women, and for Whites and non-Whites, subgroups not included or identified in prior cost effectiveness work.
Method
This paper reports on clients who participated in a randomized trial conducted in three metropolitan areas served by a large pre-paid health plan. Clients were eligible if they met the first five dimensions of the ASAM criteria for low-intensity residential treatment and had not been mandated to residential treatment due to dangerous home environment (the sixth ASAM dimension). The five day hospital programs included here are typical of mainstream private chemical dependency programs that were developed as an alternative to inpatient treatment. The seven residential programs are typical of those historically developed by members of alcohol mutual-help programs. Cost data for the study sites were collected using the Drug Abuse Treatment Cost Analysis Program (DATCAP) which produces estimates of average costs per week per client treated at a particular treatment program. Lengths of stay were derived from program records. Costs per episode for each study subject were calculated by multiplying the DATCAP-based program-specific costs (per week) by the number of weeks the subject stayed in the program to which they had been randomly assigned. Differences in length of stay, and in per-episode costs, were compared between residential and day hospital subjects using the Brown-Forsythe robust test of the equality of means.
Results
Lengths of stay at residential treatment were significantly longer than at day hospital, in the sample overall and in the disaggregated analyses for both genders and for both Whites and non-Whites. This difference was especially marked among non-Whites, who had quite short stays in day hospital. The average cost per week was $575 per week at day hospital, versus $370 per week at the residential programs. However, because of the longer stays in residential programs, this lower cost per week did not always translate to lower per-episode costs. Instead, the per-episode costs were significantly higher for those treated in residential programs than in day hospital in the sample overall, and among non-Whites. Costs were comparable for Whites and for women treated in either setting, but were marginally higher for men randomized to residential programs.
Discussion
These cost results must be considered in light of the null findings comparing outcomes between subjects randomized to residential versus day hospital programs in this study, in the overall sample and by gender and race/ethnicity: That is, the longer stays in the sample overall and for non-White clients at residential programs came at higher costs but did not lead to better rates of abstinence. An important component of the cost differential arose from especially short stays in day hospital among non-Whites, calling into question the attractiveness of day hospital for minority clients.
Conclusion
Outcomes and costs at residential versus day hospital programs were similar for women and for Whites in a randomized trial of pre-paid health plan members who met ASAM criteria for low-intensity residential treatment but were not at environmental risk. For non-Whites, and marginally for men, a preference for residential care would appear to come at a higher cost.
Implications for health care provision and use
Lengths of stay in residential treatment are significantly longer than in day hospital, but costs per week are lower. Women and Whites appear to be equally well-served in residential and day hospital programs, with no significant cost differential. Provision of residential treatment for non-Whites may be more costly than day hospital, because their residential stays are likely to be 3 times longer than they would be if treated in day hospital. For men, residential care will be marginally more costly.
Implications for health policy formulation
Residential treatment appears to represent a cost-effective alternative to day hospital for female and White clients with severe alcohol and drug problems who are not at environmental risk, although it will be important that the current study be replicated with different samples and study programs.
Implications for further research
The much shorter stays in day hospital than at residential among non-Whites highlight the need for research to better understand how to best meet the needs and preferences of non-White clients when considering both costs and outcomes.
PMCID: PMC2744443  PMID: 18424874
16.  Conflicts in Rights of Disclosure of HIV Status in South Western Nigeria: the Health Care Provider’s Perspective 
Materia Socio-Medica  2012;24(1):21-25.
Introduction:
Close interaction between clients and health care workers as regards disclosure, refusal of treatment and right to know status has been a subject of debate in legal and medical quarters. The objective of this study was to assess perceived rights of health care workers towards disclosure of HIV status in Lagos State in Southwestern Nigeria.
Methods:
This was a descriptive cross sectional study carried out among 260 health care workers using multistage sampling technique. Research instruments were semi structured self administered and pre tested questionnaires. Data was analyzed using the SPSS softwares.
Results:
Mean age of respondents was 39.3(+3.7) years. One hundred and eight four (70.8%) of the health workers studied said that it is the right of health care workers to know the HIV status of clients before commencement of treatments, and 36 (13.8%) agreed that health care workers have the right to refuse to treat or carry out procedure on known HIV positive clients. Twenty (7.7%) said that HIV positive health care workers should not be allowed to handle clients clinically, 72 (27.7%) believed that it is the right of HIV positive clients to know the HIV status of health care workers before attending to them, 36 (13.8%) of respondents has ever disclosed their HIV status to clients before carrying out procedures on them. Fifty six (21.5%) of respondents were willing to show their result results to a HIV positive clients who insist on knowing his or her HIV status, 84 (32.3%) believed that clients has the right to refuse a known HIV positive health care workers to treat or carry out some procedures.
Discussion:
There was no statistically significant association between readiness to disclose HIV status and believing that health care workers have the right to know the status of clients before given them treatment ({P< 0.05).
Conclusion:
The need to balance out perceived rights of health care workers and clients would assist in provision of quality services to HIV positive clients.
doi:10.5455/msm.2012.24.21-25
PMCID: PMC3732355  PMID: 23922512
Rights; stigma and discrimination; conflicts; health care workers.
17.  Patients' satisfaction with general practitioner services: a survey by a community health council. 
Brighton community health council responded to the invitation of five local general practitioners to undertake a patient satisfaction survey of their practices. A total of 177 mothers of children under five years old were interviewed in their own homes. Satisfaction with the services provided by the general practitioners and members of the primary health care team to the respondents and to their young children was high overall, but critical comment reflected a dissatisfaction with professionals' unwillingness to take mothers' concerns at face value and to recognize the validity of mothers' own experiential knowledge. Some women were not satisfied with the extent to which they could ask questions or explain their problem. They resented attempts by receptionists to bar access to doctors and the apparent reluctance of doctors and health visitors to make home visits. It is suggested that various strategies such as telephone consultations, written guidelines on childhood ailments and parent support groups within the context of a more interactive partnership between patients and professionals could lead to a more effective service.
PMCID: PMC1712154  PMID: 2560044
18.  Council tax valuation bands, socio-economic status and health outcome: a cross-sectional analysis from the Caerphilly Health and Social Needs Study 
BMC Public Health  2006;6:115.
Council tax valuation bands (CTVBs) are a categorisation of household property value in Great Britain. The aim of the study was to assess the CTVB as a measure of socio-economic status by comparing the strength of the associations between selected health and lifestyle outcomes and CTVBs with two measures of socio-economic status: the National Statistics Socio-Economic Classification (NS-SEC) and the 2001 UK census-based Townsend deprivation index.
Methods
Cross-sectional analysis of data on 12,092 respondents (adjusted response 62.7%) to the Caerphilly Health and Social Needs Study, a postal questionnaire survey undertaken in Caerphilly county borough, south-east Wales, UK. The CTVB was assigned to each individual by matching the sampling frame to the local authority council tax register. Crude and age-gender adjusted odds ratios for each category of CTVB, NS-SEC and fifth of the ward distribution of Townsend scores were estimated for smoking, poor diet, obesity, and limiting long-term illness using logistic regression. Mean mental (MCS) and physical (PCS) component summary scores of the Short-Form SF-36 health status questionnaire were estimated in general linear models.
Results
There were significant trends in odds ratios across the CTVB categories for all outcomes, most marked for smoking and mental and physical health status. The adjusted odds ratio for being a smoker in the lowest versus highest CTVB category was 3.80 (95% CI: 3.06, 4.71), compared to 3.00 (95% CI: 2.30, 3.90) for the NS-SEC 'never worked and long-term unemployed' versus 'higher managerial and professional' categories, and 1.61 (95% CI: 1.42, 1.83) for the most deprived versus the least deprived Townsend fifth. The difference in adjusted mean MCS scores was 5.9 points on the scale for CTVB, 9.2 for NS-SEC and 3.2 for the Townsend score. The values for the adjusted mean PCS scores were 6.3 points for CTVB, 11.3 for NS-SEC, and 2.5 for the Townsend score.
Conclusion
CTVBs assigned to individuals were strongly associated with the health and lifestyle outcomes modelled in this study. CTVBs are readily available for all residential properties and deserve further consideration as a proxy for socio-economic status in epidemiological studies in Great Britain.
doi:10.1186/1471-2458-6-115
PMCID: PMC1513204  PMID: 16669998
19.  The Ambulatory Long-Block: An Accreditation Council for Graduate Medical Education (ACGME) Educational Innovations Project (EIP) 
Introduction
Historical bias toward service-oriented inpatient graduate medical education experiences has hindered both resident education and care of patients in the ambulatory setting.
Aim
Describe and evaluate a residency redesign intended to improve the ambulatory experience for residents and patients.
Setting
Categorical Internal Medicine resident ambulatory practice at the University of Cincinnati Academic Health Center.
Program Description
We created a year-long continuous ambulatory group-practice experience separated from traditional inpatient responsibilities called the long block as an Accreditation Council for Graduate Medical Education Educational Innovations Project. The practice adopted the Chronic Care Model and residents received extensive instruction in quality improvement and interprofessional teams.
Program Evaluation
The long block was associated with significant increases in resident and patient satisfaction as well as improvement in multiple quality process and outcome measures. Continuity and no-show rates also improved.
Discussion
An ambulatory long block can be associated with improvements in resident and patient satisfaction, quality measures, and no-show rates. Future research should be done to determine effects of the long block on education and patient care in the long term, and elucidate which aspects of the long block most contribute to improvement.
doi:10.1007/s11606-008-0588-y
PMCID: PMC2517908  PMID: 18612718
ambulatory education; clinic; residency training; chronic care model
20.  Usefulness of the Medical Research Council (MRC) dyspnoea scale as a measure of disability in patients with chronic obstructive pulmonary disease 
Thorax  1999;54(7):581-586.
BACKGROUND—Methods of classifying chronic obstructive pulmonary disease (COPD) depend largely upon spirometric measurements but disability is only weakly related to measurements of lung function. With the increased use of pulmonary rehabilitation, a need has been identified for a simple and standardised method of categorising disability in COPD. This study examined the validity of the Medical Research Council (MRC) dyspnoea scale for this purpose.
METHODS—One hundred patients with COPD were recruited from an outpatient pulmonary rehabilitation programme. Assessments included the MRC dyspnoea scale, spirometric tests, blood gas tensions, a shuttle walking test, and Borg scores for perceived breathlessness before and after exercise. Health status was assessed using the St George's Respiratory Questionnaire (SGRQ) and Chronic Respiratory Questionnaire (CRQ). The Nottingham Extended Activities of Daily Living (EADL) score and Hospital Anxiety and Depression (HAD) score were also measured.
RESULTS—Of the patients studied, 32 were classified as having MRC grade 3 dyspnoea, 34 MRC grade 4 dyspnoea, and 34 MRC grade 5 dyspnoea. Patients with MRC grades 1 and 2 dyspnoea were not included in the study. There was a significant association between MRC grade and shuttle distance, SGRQ and CRQ scores, mood state and EADL. Forced expiratory volume in one second (FEV1) was not associated with MRC grade. Multiple logistic regression showed that the determinants of disability appeared to vary with the level of disability. Between MRC grades 3 and 4 the significant covariates were exercise performance, SGRQ and depression score, whilst between grades 4 and 5 exercise performance and age were the major determinants.
CONCLUSIONS—The MRC dyspnoea scale is a simple and valid method of categorising patients with COPD in terms of their disability that could be used to complement FEV1 in the classification of COPD severity.


PMCID: PMC1745516  PMID: 10377201
21.  Views of the Medical Research Council on the Green Paper “A Framework for Government Research and Development”* 
British Medical Journal  1972;1(5796):357-360.
The Council recognize the research needs of Government departments and wish to play their part in meeting them (paragraph 4). The Council have an important role in the national research effort (paragraph 5). Coherent policies in medical research are essential for the best use of resources (paragraph 6). The customer/contractor relationship is inappropriate to most biomedical research (paragraph 8). Transfer of 25% of the Council's budget to departments would, in the long term, hinder the advance of medical practice (paragraph 9). Short-term consequences for universities would be severe (paragraph 10). It would be uneconomical for departments to duplicate machinery for making detailed research policy choices (paragraph 11). A better partnership that will meet the needs of government should be developed between departments and the Council (paragraph 12). Respective responsibilities of departments and the Council in research should be redefined (paragraph 12a). Government funds for medical and related research should be reapportioned in relation to responsibilities (paragraph 12b). A basis is proposed for future partnership with departments, which is not dependent on financial sanctions (paragraph 12c). The Council favour establishment of a board similar to that proposed in the Dainton report (Annex 2).
PMCID: PMC1787266  PMID: 5008667
22.  "Conclusions about exposure to ETS and health that will be unhelpful to us"*: How the tobacco industry attempted to delay and discredit the 1997 Australian National Health and Medical Research Council report on passive smoking 
Tobacco Control  2003;12(Suppl 3):iii102-iii106.
Background: Major reviews of the health effects of passive smoking have been subjected to tobacco industry campaigns to refute the scientific evidence. Following the 1992 US Environmental Protection Agency review, the Australian National Health and Medical Research Council (NHMRC) initiated a review of the health effects of passive smoking. At the time of this review, evidence that environmental tobacco smoke causes disease was being increasingly accepted in courts of law and voluntary adoption of smoking restrictions was rapidly growing.
Objective: To demonstrate how the tobacco industry attempted to delay and discredit the publication of a report on passive smoking that the tobacco industry anticipated to contain recommendations that would be unfavourable to their business.
Methods: A search of tobacco industry documents on the Master Settlement Agreement websites was conducted using the terms and acronyms representative of the NHMRC review.
Results: The tobacco industry sought to impede the progress of the NHMRC Working Party by launching an intensive campaign to delay and discredit the report. The main strategies used were attempts to criticise the science, extensive use of Freedom of Information provisions to monitor all activity of the group, legal challenges, ad hominem attacks on the credibility of the Working Party members, rallying support from industry allies, and influencing public opinion through the media.
Conclusions: The Australian tobacco industry deliberately impeded the NHMRC Working Party's progress and successfully prevented the publication of the report's recommendations. The tobacco industry's motivation and capacity to disrupt the advancement of scientific knowledge and policy in tobacco control should be recognised and anticipated.
doi:10.1136/tc.12.suppl_3.iii102
PMCID: PMC1766130  PMID: 14645955
23.  Late Gastrointestinal Toxicity After Dose-Escalated Conformal Radiotherapy for Early Prostate Cancer: Results From the UK Medical Research Council RT01 Trial (ISRCTN47772397) 
Purpose
In men with localized prostate cancer, dose-escalated conformal radiotherapy (CFRT) improves efficacy outcomes at the cost of increased toxicity. We present a detailed analysis to provide further information about the incidence and prevalence of late gastrointestinal side effects.
Methods and Materials
The UK Medical Research Council RT01 trial included 843 men with localized prostate cancer, who were treated for 6 months with neoadjuvant radiotherapy and were randomly assigned to either 64-Gy or 74-Gy CFRT. Toxicity was evaluated before CFRT and during long-term follow-up using Radiation Therapy Oncology Group (RTOG) grading, the Late Effects on Normal Tissue: Subjective, Objective, Management (LENT/SOM) scale, and Royal Marsden Hospital assessment scores. Patients regularly completed Functional Assessment of Cancer Therapy--Prostate (FACT-P) and University of California, Los Angeles, Prostate Cancer Index (UCLA-PCI) questionnaires.
Results
In the dose-escalated group, the hazard ratio (HR) for rectal bleeding (LENT/SOM grade ≥2) was 1.55 (95% CI, 1.17–2.04); for diarrhea (LENT/SOM grade ≥2), the HR was 1.79 (95% CI, 1.10–2.94); and for proctitis (RTOG grade ≥2), the HR was 1.64 (95% CI, 1.20–2.25). Compared to baseline scores, the prevalence of moderate and severe toxicities generally increased up to 3 years and than lessened. At 5 years, the cumulative incidence of patient-reported severe bowel problems was 6% vs. 8% (standard vs. escalated, respectively) and severe distress was 4% vs. 5%, respectively.
Conclusions
There is a statistically significant increased risk of various adverse gastrointestinal events with dose-escalated CFRT. This remains at clinically acceptable levels, and overall prevalence ultimately decreases with duration of follow-up.
doi:10.1016/j.ijrobp.2009.05.052
PMCID: PMC2937212  PMID: 19836155
Prostate cancer; Conformal radiotherapy; Dose escalation; Late gastrointestinal toxicity; Phase III trial
24.  The Relationship between Characteristics of Home Care Nursing Service Contracts under Managed Competition and Continuity of Care and Client Outcomes: Evidence from Ontario 
Healthcare Policy  2007;2(4):97-113.
The purpose of this study was to investigate the impact of the Request for Proposal (RFP) process – specifically, the profit status of provider agencies awarded contracts, the service volume awarded and contract duration – on the quality of home care services and outcomes. A cross-sectional (contract characteristics) and repeated measures (clients) design was used to collect data on the study variables. Primary data were collected in 2002–2003 from 11 Community Care Access Centres (CCACs) and 11 nursing provider agencies in Ontario. The sample included 750 home care clients recruited consecutively from home care referrals. Follow-up assessments were completed on 498 clients. CCACs and provider agencies completed written questionnaires about profit status, contract volume, duration of contract, potential for renewal, number of visits made by a principal nurse and number of visits made by a registered nurse. Data were collected on client health outcomes either at admission to home care service for new clients or at entry to the study for long-term clients, and then at discharge from service or at the end of six weeks, whichever came first, using the eight subscales of the Medical Outcome Study SF-36. Analysis was conducted using hierarchical linear modelling.
For the most part, contract characteristics were not related to the consistency of principal nurse visits or client outcomes. Where differences existed, they were small. Clients of agencies awarded longer contracts received greater consistency in principal nurse visits than clients of agencies awarded shorter contracts. Clients cared for by for-profit agencies reported slightly higher satisfaction with care and better mental health outcomes than clients cared for by not-for-profit agencies. The percentage of visits made by a registered nurse was positively associated with social function outcome for clients at follow-up. In conclusion, the study findings suggest that contract characteristic variables had a small effect on home care client outcomes.
PMCID: PMC2585465  PMID: 19305736
25.  Barriers to Provider-Initiated Testing and Counselling for Children in a High HIV Prevalence Setting: A Mixed Methods Study 
PLoS Medicine  2014;11(5):e1001649.
Rashida Ferrand and colleagues combine quantitative and qualitative methods to investigate HIV prevalence among older children receiving primary care in Harare, Zimbabwe, and reasons why providers did not pursue testing.
Please see later in the article for the Editors' Summary
Background
There is a substantial burden of HIV infection among older children in sub-Saharan Africa, the majority of whom are diagnosed after presentation with advanced disease. We investigated the provision and uptake of provider-initiated HIV testing and counselling (PITC) among children in primary health care facilities, and explored health care worker (HCW) perspectives on providing HIV testing to children.
Methods and Findings
Children aged 6 to 15 y attending six primary care clinics in Harare, Zimbabwe, were offered PITC, with guardian consent and child assent. The reasons why testing did not occur in eligible children were recorded, and factors associated with HCWs offering and children/guardians refusing HIV testing were investigated using multivariable logistic regression. Semi-structured interviews were conducted with clinic nurses and counsellors to explore these factors. Among 2,831 eligible children, 2,151 (76%) were offered PITC, of whom 1,534 (54.2%) consented to HIV testing. The main reasons HCWs gave for not offering PITC were the perceived unsuitability of the accompanying guardian to provide consent for HIV testing on behalf of the child and lack of availability of staff or HIV testing kits. Children who were asymptomatic, older, or attending with a male or a younger guardian had significantly lower odds of being offered HIV testing. Male guardians were less likely to consent to their child being tested. 82 (5.3%) children tested HIV-positive, with 95% linking to care. Of the 940 guardians who tested with the child, 186 (19.8%) were HIV-positive.
Conclusions
The HIV prevalence among children tested was high, highlighting the need for PITC. For PITC to be successfully implemented, clear legislation about consent and guardianship needs to be developed, and structural issues addressed. HCWs require training on counselling children and guardians, particularly male guardians, who are less likely to engage with health care services. Increased awareness of the risk of HIV infection in asymptomatic older children is needed.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
Over 3 million children globally are estimated to be living with HIV (the virus that causes AIDS). While HIV infection is most commonly spread through unprotected sex with an infected person, most HIV infections among children are the result of mother-to-child HIV transmission during pregnancy, delivery, or breastfeeding. Mother-to-child transmission can be prevented by administering antiretroviral therapy to mothers with HIV during pregnancy, delivery, and breast feeding, and to their newborn babies. According to a report by the Joint United Nations Programme on HIV/AIDS published in 2012, 92% of pregnant women with HIV were living in sub-Saharan Africa and just under 60% were receiving antiretroviral therapy. Consequently, sub-Saharan Africa is the region where most children infected with HIV live.
Why Was This Study Done?
If an opportunity to prevent mother-to-child transmission around the time of birth is missed, diagnosis of HIV infection in a child or adolescent is likely to depend on HIV testing in health care facilities. Health care provider–initiated HIV testing and counselling (PITC) for children is important in areas where HIV infection is common because earlier diagnosis allows children to benefit from care that can prevent the development of advanced HIV disease. Even if a child or adolescent appears to be in good health, access to care and antiretroviral therapy provides a health benefit to the individual over the long term. The administration of HIV testing (and counselling) to children relies not only on health care workers (HCWs) offering HIV testing but also on parents or guardians consenting for a child to be tested. However, more than 30% of children in countries with severe HIV epidemics are AIDS orphans, and economic conditions in these countries cause many adults to migrate for work, leaving children under the care of extended families. This study aimed to investigate the reasons for acceptance and rejection of PITC in primary health care settings in Harare, Zimbabwe. By exploring HCW perspectives on providing HIV testing to children and adolescents, the study also sought to gain insight into factors that could be hindering implementation of testing procedures.
What Did the Researchers Do and Find?
The researchers identified all children aged 6 to 15 years old at six primary care clinics in Harare, who were offered HIV testing as part of routine care between 22 January and 31 May 2013. Study fieldworkers collected data on numbers of child attendances, numbers offered testing, numbers who underwent HIV testing, and reasons why HIV testing did not occur. During the study 2,831 children attending the health clinics were eligible for PITC, and just over half (1,534, 54.2%) underwent HIV testing. Eighty-two children tested HIV-positive, and nearly all of them received counselling, medication, and follow-up care. HCWs offered the test to around 75% of those eligible. The most frequent explanation given by HCWs for a diagnostic test not being offered was that the child was accompanied by a guardian not appropriate for providing consent (401 occasions, 59%); Other reasons given were a lack of available counsellors or test kits and counsellors refusing to conduct the test. The likelihood of being offered the test was lower for children not exhibiting symptoms (such as persistent skin problems), older children, or those attending with a male or a younger guardian. In addition, over 100 guardians or parents provided consent but left before the child could be tested.
The researchers also conducted semi-structured interviews with 12 clinic nurses and counsellors (two from each clinic) to explore challenges to implementation of PITC. The researchers recorded the factors associated with testing not taking place, either when offered to eligible children or when HCWs declined to offer the test. The interviewees identified the frequent absence or unavailability of parents or legal guardians as an obstacle, and showed uncertainty or misconceptions around whether testing of the guardian was mandatory (versus recommended) and whether specifically a parent (if one was living) must provide consent. The interviews also revealed HCW concerns about the availability of adequate counselling and child services, and fears that a child might experience maltreatment if he or she tested positive. HCWs also noted long waiting times and test kits being out of stock as practical hindrances to testing.
What Do These Findings Mean?
Prevalence of HIV was high among the children tested, validating the need for PITC in sub-Saharan health care settings. Although 76% of eligible attendees were offered testing, the authors note that this is likely higher than in routine settings because the researchers were actively recording reasons for not offering testing and counselling, which may have encouraged heath care staff to offer PITC more often than usual. The researchers outline strategies that may improve PITC rates and testing acceptance for Zimbabwe and other sub-Saharan settings. These strategies include developing clear laws and guidance concerning guardianship and proxy consent when testing older children for HIV, training HCWs around these policies, strengthening legislation to address discrimination, and increasing public awareness about HIV infection in older children.
Additional Information
Please access these websites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001649.
This study is further discussed in a PLOS Medicine Perspective by Davies and Kalk
The Joint United Nations Programme on HIV/AIDS publishes an annual report on the global AIDS epidemic, which provides information on progress towards eliminating new HIV infections
The World Health Organization has more information on mother-to-child transmission of HIV
The World Health Organization's website also has information about treatment for children living with HIV
Personal stories about living with HIV/AIDS, including stories from young people infected with HIV, are available through Avert, through NAM/aidsmap, and through the charity website Healthtalkonline
doi:10.1371/journal.pmed.1001649
PMCID: PMC4035250  PMID: 24866209

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