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1.  Depersonalised doctors: a cross-sectional study of 564 doctors, 760 consultations and 1876 patient reports in UK general practice 
BMJ Open  2012;2(1):e000274.
Objectives
The objectives of this study were to assess burnout in a sample of general practitioners (GPs), to determine factors associated with depersonalisation and to investigate its impact on doctors' consultations with patients.
Design
Cross-sectional, postal survey of GPs using the Maslach Burnout Inventory (MBI). Patient survey and tape-recording of consultations for a subsample of respondents stratified by their MBI scores, gender and duration of General Medical Council registration.
Setting
UK general practice.
Participants
GPs within NHS Essex.
Primary and secondary outcome measures
Scores on MBI subscales (depersonalisation, emotional exhaustion, personal accomplishment); scores on Doctors' Interpersonal Skills Questionnaire and patient-centredness scores attributed to tape-recorded consultations by independent observers.
Results
In the postal survey, 564/789 (71%) GPs completed the MBI. High levels of emotional exhaustion (261/564 doctors, 46%) and depersonalisation (237 doctors, 42%) and low levels of personal accomplishment (190 doctors, 34%) were reported. Depersonalisation scores were related to characteristics of the doctor and the practice. Male doctors reported significantly higher (p<0.001) depersonalisation than female doctors. Doctors registered with the General Medical Council under 20 years had significantly higher (p=0.005) depersonalisation scores than those registered for longer. Doctors in group practices had significantly higher (p=0.001) depersonalisation scores than single-handed practitioners. Thirty-eight doctors agreed to complete the patient survey (n=1876 patients) and audio-record consultations (n=760 consultations). Depersonalised doctors were significantly more likely (p=0.03) to consult with patients who reported seeing their ‘usual doctor’. There were no significant associations between doctors' depersonalisation and their patient-rated interpersonal skills or observed patient-centredness.
Conclusions
This is the largest number of doctors completing the MBI with the highest levels of depersonalisation reported. Despite experiencing substantial depersonalisation, doctors' feelings of burnout were not detected by patients or independent observers. Such levels of burnout are, however, worrying and imply a need for action by doctors themselves, their medical colleagues, professional bodies, healthcare organisations and the Department of Health.
Article summary
Article focus
A cross-sectional survey was designed to assess levels of burnout in a census sample of GPs in Essex, UK, and to determine which doctor- or practice-related variables predicted higher levels of burnout.
In the substudy, patients rated the interpersonal skills of their doctor and independent observers assessed the degree of patient-centredness in a sample of the doctors' audio-taped consultations.
Key messages
High levels of burnout were reported in the census survey—46% doctors reported emotional exhaustion, 42% reported depersonalisation and 34% reported low levels of personal accomplishment.
Doctors' depersonalisation scores could be predicted by a range of variables relating to the individual doctor and their practice, but higher depersonalisation scores were not associated with poorer patient ratings of the doctors' interpersonal skills or a reduction in the patient-centredness of their consultations.
While the professional practice and patient-centredness of consultations of the GPs in this study were not affected by feelings of burnout, there is a need to offer help and support for doctors who are experiencing this.
Strengths and limitations of this study
A high response rate (71%) was achieved in the census sample of GPs completing the MBI and a subsample of 38 doctors who satisfied the predetermined sample stratification consented to further assessment (patient survey and audio-taping of consultations).
The study was, however, limited to one county in the UK and thus cannot be extrapolated to other parts of the UK.
There was a differential response rate by the gender of the participant. Male doctors who were registered with the General Medical Council for >20 years were less likely to respond to the survey than their female counterparts.
doi:10.1136/bmjopen-2011-000274
PMCID: PMC3274717  PMID: 22300669
2.  Task Shifting for Scale-up of HIV Care: Evaluation of Nurse-Centered Antiretroviral Treatment at Rural Health Centers in Rwanda 
PLoS Medicine  2009;6(10):e1000163.
Fabienne Shumbusho and colleagues evaluate a task-shifting model of nurse-centered antiretroviral treatment prescribing in rural primary health centers in Rwanda and find that nurses can effectively and safely prescribe ART when given adequate training, mentoring, and support.
Background
The shortage of human resources for health, and in particular physicians, is one of the major barriers to achieve universal access to HIV care and treatment. In September 2005, a pilot program of nurse-centered antiretroviral treatment (ART) prescription was launched in three rural primary health centers in Rwanda. We retrospectively evaluated the feasibility and effectiveness of this task-shifting model using descriptive data.
Methods and Findings
Medical records of 1,076 patients enrolled in HIV care and treatment services from September 2005 to March 2008 were reviewed to assess: (i) compliance with national guidelines for ART eligibility and prescription, and patient monitoring and (ii) key outcomes, such as retention, body weight, and CD4 cell count change at 6, 12, 18, and 24 mo after ART initiation. Of these, no ineligible patients were started on ART and only one patient received an inappropriate ART prescription. Of the 435 patients who initiated ART, the vast majority had adherence and side effects assessed at each clinic visit (89% and 84%, respectively). By March 2008, 390 (90%) patients were alive on ART, 29 (7%) had died, one (<1%) was lost to follow-up, and none had stopped treatment. Patient retention was about 92% by 12 mo and 91% by 24 mo. Depending on initial stage of disease, mean CD4 cell count increased between 97 and 128 cells/µl in the first 6 mo after treatment initiation and between 79 and 129 cells/µl from 6 to 24 mo of treatment. Mean weight increased significantly in the first 6 mo, between 1.8 and 4.3 kg, with no significant increases from 6 to 24 mo.
Conclusions
Patient outcomes in our pilot program compared favorably with other ART cohorts in sub-Saharan Africa and with those from a recent evaluation of the national ART program in Rwanda. These findings suggest that nurses can effectively and safely prescribe ART when given adequate training, mentoring, and support.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
Infection with the human immunodeficiency virus (HIV) is a serious health problem in sub-Saharan Africa. The virus attacks white blood cells that protect against infection, most commonly a type of white blood cell called CD4. When a person has been infected with HIV for a long time, the number of CD4 cells they have goes down, resulting in acquired immune deficiency syndrome (AIDS), in which the person's immune system no longer functions effectively.
The World Health Organization (WHO) has divided the disease into four stages as it progresses, according to symptoms including weight loss and so-called opportunistic infections. These are known as clinical stage I, II, III, or IV but were revised and renamed 1, 2, 3, and 4 in September 2005. HIV infection and AIDS cannot be cured but they can be managed with antiretroviral treatment (ART). The WHO currently recommends that ART is begun when the CD4 count falls below 350.
Rwanda is a country situated in the central Africa with a population of around 9 million inhabitants; over 3% of the rural population and 7% of the urban population are infected with HIV. In 2007, the WHO estimated that 220,000 Rwandan children had lost one or both parents to AIDS.
Why Was This Study Done?
The WHO estimates that 9.7 million people with HIV in low- to middle-income countries need ART but at the end of 2007, only 30% of these, including in Rwanda, had access to treatment. In many low-income countries a major factor in this is a lack of doctors. Rwanda, for example, has one doctor per 50,000 inhabitants and one nurse per 3,900 inhabitants.
This situation has led the WHO to recommend “task shifting,” i.e., that the task of prescribing ART should be shifted from doctors to nurses so that more patients can be treated. This type of reorganization is well studied in high-income countries, but the researchers wanted to help develop a system for treating AIDS that would be effective and timely in a predominantly rural, low-income setting such as Rwanda.
What Did the Researchers Do and Find?
In conjunction with the Rwandan Ministry of Health, the researchers developed and piloted a task-shifting program, in which one nurse in each of three rural Rwandan primary health centers (PHCs) was trained to examine HIV patients and prescribe ART in simple cases. Nurses had to complete more than 50 consultations observed by the doctor before being permitted to consult patients independently. More complex cases were referred to a doctor. The authors developed standard checklists, instructions, and evaluation forms to guide nurses and the doctors who supervised them once a week.
The authors evaluated the pilot program by reviewing the records of 1,076 patients who enrolled on it between September 2005 and March 2008. They looked to see whether the nurses had followed guidelines and monitored the patients correctly. They also considered health outcomes for the patients, such as their death rate, their body weight, their CD4 cell count, and whether they maintained contact with caregivers.
They found that by March 2008, 451 patients had been eligible for ART. 435 received treatment and none of the patients were prescribed ART when they should not have been. Only one prescription did not follow national guidelines.
At every visit, nurses were supposed to assess whether patients were taking their drugs and to monitor side effects. They did this and maintained records correctly for the vast majority of the 435 patients who were prescribed ART. 390 patients (over 90%) of the 435 prescribed receiving ART continued to take it and maintain contact with the pilot PHC's program. 29 patients died. Only one was lost to follow up and the others transferred to another ART site. The majority gained weight in the first six months and their CD4 cell counts rose. Outcomes, including death rate, were similar to those treated on the (doctor-led) Rwandan national ART program and other sub-Saharan African national (doctor-led) programs.
What Do These Findings Mean?
The study suggests that nurses are able to prescribe ART safely and effectively in a rural sub-Saharan setting, given sufficient training, mentoring, and support. Nurse-led prescribing of ART could mean that timely, appropriate treatment reaches many more HIV patients. It would reduce the burden of HIV care for doctors, freeing their time for other duties, and the study is already being used by the Rwandan Ministry of Health as a basis for plans to adopt a task-shifting strategy for the national ART program.
The study does have some limitations. The pilot program was funded and designed as a health project to deliver ART in rural areas, rather than a research project to compare nurse-led and doctor-led ART programs. There was no group of equivalent patients treated by doctors rather than nurses for direct comparison, although the authors did compare outcomes with those achieved nationally for doctor-led ART. The most promising sites, nurses, and patients were selected for the pilot and careful monitoring may have been an additional motivation for the nurses and doctors taking part. Health professionals in a scaled-up program may not be as committed as those in the pilot, who were carefully monitored. In addition, the nature of the pilot, which lasted for under three years and recruited new patients throughout, meant that patients were followed up for relatively short periods.
The authors also warn that they did not consider in this study the changes task shifting will make to doctors' roles and the skills required of both doctors and nurses. They recommend that task shifting should be implemented as part of a wider investment in health systems, human resources, training, adapted medical records, tools, and protocols.
Additional Information
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1000163.
PLoS Medicine includes a page collecting together its recent articles on HIV infection and AIDS that includes research articles, perspectives, editorials, and policy forums
SciDev.net provides news, views, and information about science, technology, and the developing world, including a section specific to HIV/AIDs
The World Health Organization (WHO) has published a downloadable booklet Task Shifting to Tackle Health Worker Shortages
The WHO offers information on HIV and AIDS (in Arabic, Chinese, English, French, Russian, and Spanish) as well as health information and fact sheets on individual countries, including on Rwanda
The UNAIDS/WHO working group on HIV/AIDS and Sexually Transmitted Infections (STI) Surveillance gathers and publishes data on the prevalence of HIV and AIDS in individual countries, including on Rwanda
AIDS.ORG provides information to help prevent HIV infections and to improve the lives of those affected by HIV and AIDS. Factsheets on many aspects of HIV and AIDS are available. It is the official online publisher of AIDS Treatment News
doi:10.1371/journal.pmed.1000163
PMCID: PMC2752160  PMID: 19823569
3.  Health-related quality of life and utility scores in short-term survivors of pediatric acute lymphoblastic leukemia 
Quality of Life Research  2012;22(3):677-681.
Purpose
Increase of survival in pediatric acute lymphoblastic leukemia (ALL) has made outcomes such as health-related quality of life (HRQL) and economic burden more important. To make informed decisions on the use of healthcare resources, costs as well as utilities need to be taken into account. Among the preference-based HRQL instruments, the Health Utilities Index (HUI) is the most employed in pediatric cancer. Information on utility scores during ALL treatment and in long-term survivors is available, but utility scores in short-term survivors are lacking. This study assesses utility scores, health state, and HRQL in short-term (6 months to 4 years) ALL survivors.
Methods
Cross-sectional single-center cohort study of short-term ALL survivors using HUI3 proxy assessments.
Results
Thirty-three survivors (median 1.5 years off treatment) reported 14 unique health states. The majority of survivors (61 %) enjoyed a perfect health, but 21 % had three affected attributes. Overall, HRQL was nonsignificantly lower compared to the norm, although the difference was large and may be clinically relevant. Cognition was significantly impaired (p = 0.03).
Conclusion
Although 61 % of short-term survivors of ALL report no impairment, the health status of the other patients lead to a clinically important impaired HRQL compared to norms. Prospective studies assessing utility scores associated with pediatric ALL should be performed, enabling valid and reliable cost-utility analyses for policy makers to make informed decisions.
doi:10.1007/s11136-012-0183-x
PMCID: PMC3607731  PMID: 22547048
Quality of life; Acute lymphoblastic leukemia; Health Utilities Index; Survivor; Childhood cancer; Pediatric
4.  Patient-reported outcome 2 years after lung transplantation: does the underlying diagnosis matter? 
Purpose
Transplantation has the potential to produce profound effects on survival and health-related quality of life (HRQL). The inclusion of the patient’s perspective may play an important role in the assessment of the effectiveness of lung transplantation. Patient perspectives are assessed by patient-reported outcome measures, including HRQL measures. We describe how patients’ HRQL among different diagnosis groups can be used by clinicians to monitor and evaluate the outcomes associated with transplantation.
Methods
Consecutive lung transplant recipients attending the lung transplant outpatient clinic in a tertiary institution completed the 15-item Health Utilities Index (HUI) questionnaire on a touchscreen computer. The results were available to clinicians at every patient visit. The HUI3 covers a range of severity and comorbidities in eight dimensions of health status. Overall HUI3 scores are on a scale in which dead = 0.00 and perfect health = 1.00; disability categories range from no disability = 1 to severe disability <0.70. Single-attribute and overall HUI3 scores were used to compare patients’ HRQL among different diagnosis groups. Random-effect models with time since transplant as a random variable and age, gender, underlying diagnoses, infections, and broncholitis obliterans syndrome as fixed variables were built to identify determinants of health status at 2-years posttransplantation.
Results
Two hundred and fourteen lung transplant recipients of whom 61% were male with a mean age of 52 (19–75) years were included in the study. Chronic obstructive pulmonary disease and cystic fibrosis patients displayed moderate disability, while pulmonary fibrosis and pulmonary arterial hypertension patients displayed severe disability. Patients with chronic obstructive pulmonary disease had the worst pain level, whereas patients with pulmonary fibrosis had the worst emotion and cognition levels. A random-effect model confirmed that development of broncholitis obliterans syndrome was the most important determinant of health status (P = 0.03) compared to other variables, such as cytomegalovirus infections and underlying diagnoses.
Conclusion
Descriptions of patients’ HRQL among different diagnosis groups could be used by clinicians to assist individualized patient care.
doi:10.2147/PROM.S32399
PMCID: PMC3508652  PMID: 23204877
patient-reported outcomes; health-related quality of life measures; underlying diagnoses in lung transplant recipients; health utilities index
5.  The impact of disease progression on perceived health status and quality of life of long-term cancer survivors 
Journal of Cancer Survivorship  2009;3(3):164-173.
Introduction
The number of cancer survivors experiencing disease progression (DP) is increasing with the number of cancer survivors. However, little is known whether DP affects health-related quality of life (HRQL) of long-term cancer survivors. We aimed therefore to compare the health status (HS) and HRQL of DP and disease-free (DF) survivors up to 15 years after initial diagnosis.
Methods
232 cancer survivors with DP identified through the Eindhoven Cancer Registry were matched with 232 DF survivors of similar demographic and clinical characteristics. Patients completed generic HS (SF-36) and cancer-specific HRQL (QOL-CS) questionnaires 5–15 years after diagnosis.
Results
Compared with DF survivors, DP survivors exhibited significantly lower scores on all SF-36 and QOL-CS (except spiritual well-being) dimensions. DF survivors had better scores than the normative population on all SF-36 dimensions. Among survivors with DP, those with short survival (<5 years) had significantly poorer HS scores on all dimensions except bodily pain compared with the normative population. Comparatively, the long survival (≥5 years) DP group had better HRQL than the short DP group but poorer HRQL than the normative population. In multivariate analyses, DP and DF survival time were independently associated with aspects of HS and HRQL in cancer survivors.
Discussions/Conclusions
DP cancer survivors have poorer long-term HS and HRQL compared with DF survivors. However, there is suggestion that HS and HRQL does improve over time following DP.
Implication for Cancer Survivors
Although DP survivors report poorer long-term HRQL compared with DF cancer survivors, results suggest that time can attenuate the distress of DP on HRQL. Psycho-educational programs could help to increase patients’ sense of empowerment and personal control should DP occur.
doi:10.1007/s11764-009-0094-1
PMCID: PMC2714447  PMID: 19557519
Cancer; Disease progression; Health status; Long-term survivors; Quality of life; Recurrence
6.  Patient-Physician Communication About Health-Related Quality-of-Life Problems: Are Non-Hodgkin Lymphoma Survivors Willing to Talk? 
Journal of Clinical Oncology  2013;31(31):3964-3970.
Purpose
To investigate non-Hodgkin lymphoma (NHL) survivors' willingness to discuss health-related quality-of-life (HRQOL) problems with their follow-up care physician.
Patients and Methods
Willingness to discuss HRQOL problems (physical, daily, emotional, social, and sexual functioning) was examined among 374 NHL survivors, 2 to 5 years postdiagnosis. Survivors were asked if they would bring up HRQOL problems with their physician and indicate reasons why not. Logistic regression models examined the association of patient sociodemographics, clinical characteristics, follow-up care variables, and current HRQOL scores with willingness to discuss HRQOL problems.
Results
Overall, 94%, 82%, 76%, 43%, and 49% of survivors would initiate discussions of physical, daily, emotional, social, and sexual functioning, respectively. Survivors who indicated their physician “always” spent enough time with them or rated their care as “excellent” were more willing to discuss HRQOL problems (P < .05). Survivors reporting poorer physical health were less willing to discuss their daily functioning problems (P < .001). Men were more willing to discuss sexual problems than women (P < .001). One in three survivors cited “nothing can be done” as a reason for not discussing daily functioning problems, and at least one in four cited “this was not their doctor's job” and a preference to “talk to another clinician” as reasons for not discussing emotional, social, and sexual functioning.
Conclusion
NHL survivors' willingness to raise HRQOL problems with their physician varied by HRQOL domain. For some domains, even when survivors were experiencing problems, they may not discuss them. To deliver cancer care for the whole patient, interventions that facilitate survivor-clinician communication about survivors' HRQOL are needed.
doi:10.1200/JCO.2012.47.6705
PMCID: PMC3805931  PMID: 24062408
7.  Health-related quality of life of child and adolescent retinoblastoma survivors in the Netherlands 
Background
To assess health-related quality of life (HRQoL) in children (8–11 years) and adolescents (12–18 years) who survived retinoblastoma (RB), by means of the KIDSCREEN self-report questionnaire and the proxy-report version.
Methods
This population-based cross-sectional study (participation rate 70%) involved 65 RB survivors (8–18 years) and their parents. Child/adolescents' and parents' perception of their youth's HRQoL was assessed using the KIDSCREEN, and the results were compared with Dutch reference data. Relations with gender, age, marital status of the parents, and visual acuity were analyzed.
Results
RB survivors reported better HRQoL than did the Dutch reference group on the dimensions "moods and emotions" and "autonomy". Increased ratings of HRQoL in RB survivors were mainly seen in perceptions of the younger children and adolescent girls. RB survivors with normal visual acuity scored higher on "physical well-being" than visually impaired survivors. Age was negatively associated with the dimensions "psychological well-being", "self-perception" (according to the child and parent reports) and "parent relations and home life" (according to the child). "Self-perception" was also negatively associated with visual acuity (according to the child). Only parents of young boys surviving RB reported lower on "autonomy" than the reference group, and parents of low visual acuity and blind RB survivors reported higher on "autonomy" than parents of visually unimpaired survivors. Survivors' perceptions and parents' perceptions correlated poorly on all HRQoL dimensions.
Conclusion
RB survivors reported a very good HRQoL compared with the Dutch reference group. The perceptions related to HRQoL differ substantially between parents and their children, i.e. parents judge the HRQoL of their child to be relatively poorer. Although the results are reassuring, additional factors of HRQoL that may have more specific relevance, such as psychological factors or coping skills, should be explored.
doi:10.1186/1477-7525-5-65
PMCID: PMC2219958  PMID: 18053178
8.  Neurocognitive Status in Long-Term Survivors of Childhood CNS Malignancies: A Report from the Childhood Cancer Survivor Study 
Neuropsychology  2009;23(6):705-717.
Background
Among survivors of childhood cancer, those with Central Nervous System (CNS) malignancies have been found to be at greatest risk for neuropsychological dysfunction in the first few years following diagnosis and treatment. This study follows survivors to adulthood to assess the long term impact of childhood CNS malignancy and its treatment on neurocognitive functioning.
Participants & Methods
As part of the Childhood Cancer Survivor Study (CCSS), 802 survivors of childhood CNS malignancy, 5937 survivors of non-CNS malignancy and 382 siblings without cancer completed a 25 item Neurocognitive Questionnaire (CCSS-NCQ) at least 16 years post cancer diagnosis assessing task efficiency, emotional regulation, organizational skills and memory. Neurocognitive functioning in survivors of CNS malignancy was compared to that of non-CNS malignancy survivors and a sibling cohort. Within the group of CNS malignancy survivors, multiple linear regression was used to assess the contribution of demographic, illness and treatment variables to reported neurocognitive functioning and the relationship of reported neurocognitive functioning to educational, employment and income status.
Results
Survivors of CNS malignancy reported significantly greater neurocognitive impairment on all factors assessed by the CCSS-NCQ than non-CNS cancer survivors or siblings (p<.01), with mean T scores of CNS malignancy survivors substantially more impaired that those of the sibling cohort (p<.001), with a large effect size for Task Efficiency (1.16) and a medium effect size for Memory (.68). Within the CNS malignancy group, medical complications, including hearing deficits, paralysis and cerebrovascular incidents resulted in a greater likelihood of reported deficits on all of the CCSS-NCQ factors, with generally small effect sizes (.22-.50). Total brain irradiation predicted greater impairment on Task Efficiency and Memory (Effect sizes: .65 and .63, respectively), as did partial brain irradiation, with smaller effect sizes (.49 and .43, respectively). Ventriculoperitoneal (VP) shunt placement was associated with small deficits on the same scales (Effect sizes: Task Efficiency .26, Memory .32). Female gender predicted a greater likelihood of impaired scores on 2 scales, with small effect sizes (Task Efficiency .38, Emotional Regulation .45), while diagnosis before age 2 years resulted in less likelihood of reported impairment on the Memory factor with a moderate effect size (.64). CNS malignancy survivors with more impaired CCSS-NCQ scores demonstrated significantly lower educational attainment (p<.01), less household income (p<.001) and less full time employment (p<.001).
Conclusions
Survivors of childhood CNS malignancy are at significant risk for impairment in neurocognitive functioning in adulthood, particularly if they have received cranial radiation, had a VP shunt placed, suffered a cerebrovascular incident or are left with hearing or motor impairments. Reported neurocognitive impairment adversely affected important adult outcomes, including education, employment, income and marital status.
doi:10.1037/a0016674
PMCID: PMC2796110  PMID: 19899829
Neurocognitive functioning; brain tumors; CNS malignancies; Childhood Cancer Survivor Study
9.  Why Reassurance Fails in Patients with Unexplained Symptoms—An Experimental Investigation of Remembered Probabilities 
PLoS Medicine  2006;3(8):e269.
Background
Providing reassurance is one of physicians' most frequently used verbal interventions. However, medical reassurance can fail or even have negative effects. This is frequently the case in patients with medically unexplained symptoms. It is hypothesized that these patients are more likely than patients from other groups to incorrectly recall the likelihoods of medical explanations provided by doctors.
Methods and Findings
Thirty-three patients with medically unexplained symptoms, 22 patients with major depression, and 30 healthy controls listened to an audiotaped medical report, as well as to two control reports. After listening to the reports, participants were asked to rate what the doctor thinks the likelihood is that the complaints are caused by a specific medical condition.
Although the doctor rejected most of the medical explanations for the symptoms in his verbal report, the patients with medically unexplained complaints remembered a higher likelihood for medical explanations for their symptoms. No differences were found between patients in the other groups, and for the control conditions. When asked to imagine that the reports were applicable to themselves, patients with multiple medical complaints reported more concerns about their health state than individuals in the other groups.
Conclusions
Physicians should be aware that patients with medically unexplained symptoms recall the likelihood of medical causes for their complaints incorrectly. Therefore, physicians should verify correct understanding by using check-back questions and asking for summaries, to improve the effect of reassurance.
Those patients for whom there is no medical explanation for their symptoms are likely to have more difficulty than other patients in remembering information intended to reassure them about their condition.
Editors' Summary
Background.
Being told by the doctor that that niggling headache or persistent stomach ache is not caused by a medical condition reassures most patients. But for some—those with a history of medically unexplained complaints—being told that tests have revealed no underlying cause for their symptoms provides little or no reassurance. Such patients have what is sometimes called “somatization syndrome.” In somatization, mental factors such as stress manifest themselves as physical symptoms. Patients with somatization syndrome start to report multiple medically unexplained symptoms as young adults. These symptoms, which change over time, include pain at different sites in the body and digestive, reproductive, and nervous system problems. What causes this syndrome is unknown and there is no treatment other than helping patients to control their symptoms.
Why Was This Study Done?
Patients with medically unexplained complaints make up a substantial and expensive part of the workload of general medical staff. Part of this expense is because patients with somatization syndrome are not reassured by their medical practitioners telling them there is no physical cause for their symptoms, which leads to requests for further tests. It is unclear why medical reassurance fails in these patients, but if this puzzle could be solved, it might help doctors to deal better with them. In this study, the researchers tested the idea that these patients do not accept medical reassurance because they incorrectly remember what their doctors have told them about the likelihood that specific medical conditions could explain their symptoms.
What Did the Researchers Do and Find?
The researchers recruited patients with medically unexplained symptoms and, for comparison, patients with depression and healthy individuals. All the participants were assessed for somatization syndrome and their general memory tested. They then listened to three audiotapes. In one, a doctor gave test results to a patient with abdominal pain (a medical situation). The other two tapes dealt with a social situation (the lack of an invitation to a barbecue) and a neutral situation (a car breakdown). Each tape contained ten messages, including four that addressed possible explanations for the problem. Two were unambiguous and negative—for example, “the reason for your complaints is definitely not stomach flu.” Two were ambiguous but highly unlikely—“we don't think that you have bowel cancer; this is very unlikely.” The researchers then assessed how well the participants remembered the likelihood that any given explanation was responsible for the patient's symptoms, the missing invitation, or the broken-down car. The patients with somatization syndrome overestimated the likelihood of medical causes for symptoms, particularly (and somewhat surprisingly) when the doctor's assessment had been unambiguous. By contrast, the other participants correctly remembered the doctor's estimates as low. The three study groups were similar in their recall of the likelihood estimates from the social or neutral situation. Finally, when asked to imagine that the medical situation was personally applicable, the patients with unexplained symptoms reacted more emotionally than the other study participants by reporting more concerns with their health.
What Do These Findings Mean?
These results support the researchers' hypothesis that people with somatization syndrome remember the chance that a given symptom has a specific medical cause incorrectly. This is not because of a general memory deficit or an inability to commit health-related facts to memory. The results also indicate that these patients react emotionally to medical situations, so they may find it hard to cope when a doctor fails to explain all their symptoms. Some of these characteristics could, of course, reflect the patients' previous experiences with medical professionals, and the experiment will need to be repeated with additional taped situations and more patients before firm recommendations can be made to help people with somatization syndrome. Nevertheless, given that medical reassurance and the presentation of negative results led to overestimates of the likelihood of medical explanations for symptoms in patients with somatization syndrome, the researchers recommend that doctors bear this bias in mind. To reduce it, they suggest, doctors could ask patients for summaries about what they have been told. This would make it possible to detect when patients have misremembered the likelihood of various medical explanations, and provide an opportunity to correct the situation.
Additional Information.
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.0030269.
• MedlinePlus encyclopedia entry on somatization disorder
• Wikipedia page on somatization disorder (note that Wikipedia is a free online encyclopedia that anyone can edit)
• Prodigy Knowledge's information for patients on somatization and somatoform disorders
doi:10.1371/journal.pmed.0030269
PMCID: PMC1523375  PMID: 16866576
10.  Neurocognitive Functioning in Adult Survivors of Childhood Non-Central Nervous System Cancers 
Background
We sought to measure self-reported neurocognitive functioning among survivors of non-central nervous system (CNS) childhood cancers, overall and compared with a sibling cohort, and to identify factors associated with worse functioning.
Methods
In a retrospective cohort study, 5937 adult survivors of non-CNS cancers and 382 siblings completed a validated neuropsychological instrument with subscales in task efficiency, emotional regulation, organization, and memory. Scores were converted to T scores; scores in the worst 10% of siblings’ scores (ie, T score ≥63) were defined as impaired. Non-CNS cancer survivors and siblings were compared with multivariable linear regression and log-binomial regression. Among survivors, log-binomial models assessed the association of patient and treatment factors with neurocognitive dysfunction. All statistical tests were two-sided.
Results
Non-CNS cancer survivors had similar or slightly worse (<0.5 standard deviation) mean test scores for all four subscales than siblings. However, frequencies of impaired survivors were approximately 50% higher than siblings in task efficiency (13.0% of survivors vs 7.3% of siblings), memory (12.5% vs 7.6%), and emotional regulation (21.2% vs 14.4%). Impaired task efficiency was most often identified in patients with acute lymphoblastic leukemia who received cranial radiation therapy (18.1% with impairment), myeloid leukemia who received cranial radiation therapy (21.2%), and non-Hodgkin lymphoma (13.9%). In adjusted analysis, diagnosis age of younger than 6 years, female sex, cranial radiation therapy, and hearing impairment were associated with impairment.
Conclusion
A statistically and clinically significantly higher percentage of self-reported neurocognitive impairment was found among survivors of non-CNS cancers than among siblings.
doi:10.1093/jnci/djq156
PMCID: PMC2886093  PMID: 20458059
11.  The role of the general health questionnaire in general practice consultations. 
The British Journal of General Practice  1998;48(434):1565-1569.
BACKGROUND: The patient self-rating questionnaire is commonly used as a research tool to identify patients with 'unrecognized' depression. There is no evidence to support its use as a clinical tool in general practice. AIM: To determine whether use of the 30-item general health questionnaire (GHQ) is a practical means of increasing identification of 'new' episodes of emotional distress among patients consulting their general practitioner (GP). METHOD: A randomized controlled trial was carried out in a Scottish new town practice with eight partners. In the waiting room, 1912 patients aged over 14 years and consulting over a 10-month period attempted to complete the GHQ. The 'clinical judgement' group posted the questionnaire into a box then attended the doctor as normal. The 'screened' group presented the questionnaire to the doctor. After the consultation, the doctor completed an assessment questionnaire. The main outcome measures were GHQ scores and doctors' assessments of mental health. RESULTS: In total, 1589 patients were eligible to participate. However, 207 patients in the screened group were excluded because the doctor did not look at the questionnaire. The clinical judgement group (59.7% patients) and the screened group (40.3%) were compared. Although the doctors' diagnoses of distress were low in the clinical judgement group (8.1%), they were significantly greater in the screened group (13.9%) where the diagnosis of depression was doubled. The percentage of patients scoring greater than or equal to 9 (GHQ+) was 21.5% and 21.0% respectively. The level of agreement between the doctors' diagnoses of distress and the questionnaires scoring GHQ+ rose from 19% in the clinical judgement group to 35% in the screened group. CONCLUSIONS: The general health questionnaire used in a practice setting increases the identification of patients with emotional distress. However, the use made of the questionnaires in the screened group raises questions of doctor and patient acceptability.
PMCID: PMC1313218  PMID: 9830180
12.  Packaging Health Services When Resources Are Limited: The Example of a Cervical Cancer Screening Visit 
PLoS Medicine  2006;3(11):e434.
Background
Increasing evidence supporting the value of screening women for cervical cancer once in their lifetime, coupled with mounting interest in scaling up successful screening demonstration projects, present challenges to public health decision makers seeking to take full advantage of the single-visit opportunity to provide additional services. We present an analytic framework for packaging multiple interventions during a single point of contact, explicitly taking into account a budget and scarce human resources, constraints acknowledged as significant obstacles for provision of health services in poor countries.
Methods and Findings
We developed a binary integer programming (IP) model capable of identifying an optimal package of health services to be provided during a single visit for a particular target population. Inputs to the IP model are derived using state-transition models, which compute lifetime costs and health benefits associated with each intervention. In a simplified example of a single lifetime cervical cancer screening visit, we identified packages of interventions among six diseases that maximized disability-adjusted life years (DALYs) averted subject to budget and human resource constraints in four resource-poor regions. Data were obtained from regional reports and surveys from the World Health Organization, international databases, the published literature, and expert opinion. With only a budget constraint, interventions for depression and iron deficiency anemia were packaged with cervical cancer screening, while the more costly breast cancer and cardiovascular disease interventions were not. Including personnel constraints resulted in shifting of interventions included in the package, not only across diseases but also between low- and high-intensity intervention options within diseases.
Conclusions
The results of our example suggest several key themes: Packaging other interventions during a one-time visit has the potential to increase health gains; the shortage of personnel represents a real-world constraint that can impact the optimal package of services; and the shortage of different types of personnel may influence the contents of the package of services. Our methods provide a general framework to enhance a decision maker's ability to simultaneously consider costs, benefits, and important nonmonetary constraints. We encourage analysts working on real-world problems to shift from considering costs and benefits of interventions for a single disease to exploring what synergies might be achievable by thinking across disease burdens.
Jane Kim and colleagues analyzed the possible ways that multiple health interventions might be packaged together during a single visit, taking into account scarce financial and human resources.
Editors' Summary
Background.
Public health decision makers in developed and developing countries are exploring the idea of providing packages of health checks at specific times during a person's lifetime to detect and/or prevent life-threatening diseases such as diabetes, heart problems, and some cancers. Bundling together tests for different diseases has advantages for both health-care systems and patients. It can save time and money for both parties and, by associating health checks with life events such as childbirth, it can take advantage of a valuable opportunity to check on the overall health of individuals who may otherwise rarely visit a doctor. But money and other resources (for example, nurses to measure blood pressure) are always limited, even in wealthy countries, so decision makers have to assess the likely costs and benefits of packages of interventions before putting them into action.
Why Was This Study Done?
Recent evidence suggests that women in developing countries would benefit from a once-in-a-lifetime screen for cervical cancer, a leading cause of cancer death for this population. If such a screening strategy for cervical cancer were introduced, it might provide a good opportunity to offer women other health checks, but it is unclear which interventions should be packaged together. In this study, the researchers have developed an analytic framework to identify an optimal package of health services to offer to women attending a clinic for their lifetime cervical cancer screen. Their model takes into account monetary limitations and possible shortages in trained personnel to do the health checks, and balances these constraints against the likely health benefits for the women.
What Did the Researchers Do and Find?
The researchers developed a “mathematical programming” model to identify an optimal package of health services to be provided during a single visit. They then used their model to estimate the average costs and health outcomes per woman of various combinations of health interventions for 35- to 40-year-old women living in four regions of the world with high adult death rates. The researchers chose breast cancer, cardiovascular disease, depression, anemia caused by iron deficiency, and sexually transmitted diseases as health conditions to be checked in addition to cervical cancer during the single visit. They considered two ways—one cheap in terms of money and people; the other more expensive but often more effective—of checking for or dealing with each potential health problem. When they set a realistic budgetary constraint (based on the annual health budget of the poorest countries and a single health check per woman in the two decades following her reproductive years), the optimal health package generated by the model for all four regions included cervical cancer screening done by testing for human papillomavirus (an effective but complex test), treatment for depression, and screening or treatment for anemia. When a 50% shortage in general (for example, nurses) and specialized (for example, doctors) personnel time was also included, the health benefits of the package were maximized by using a simpler test for cervical cancer and by treating anemia but not depression; this freed up resources in some regions to screen for breast cancer or cardiovascular disease.
What Do These Findings Mean?
The model described by the researchers provides a way to explore the potential advantages of delivering a package of health interventions to individuals in a single visit. Like all mathematical models, its conclusions rely heavily on the data used in its construction. Indeed, the researchers stress that, because they did not have full data on the effectiveness of each intervention and made many other assumptions, their results on their own cannot be used to make policy decisions. Nevertheless, their results clearly show that the packaging of multiple health services during a single visit has great potential to maximize health gains, provided the right interventions are chosen. Most importantly, their analysis shows that in the real world the shortage of personnel, which has been ignored in previous analyses even though it is a major problem in many developing countries, will affect which health conditions and specific interventions should be bundled together to provide the greatest impact on public health.
Additional Information.
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.0030434.g001.
The World Health Organization has information on choosing cost-effective health interventions and on human resources for health
The American Cancer Society offers patient information on cervical cancer
The Alliance for Cervical Cancer Prevention includes information about cervical cancer prevention programs in developing countries
doi:10.1371/journal.pmed.0030434
PMCID: PMC1635742  PMID: 17105337
13.  Quality of Life among Immigrant Latina Breast Cancer Survivors: Realities of Culture and Enhancing Cancer Care 
Journal of Cancer Education  2011;26(4):724-733.
Objectives
Breast cancer is the most common cancer among Latinas. This study examined social, cultural, and health care system factors that impact quality of life and survivorship experiences of Latina immigrant breast cancer survivors.
Design
We interviewed Latina breast cancer survivors (n=19) and, based on the interview findings, conducted two focus groups (n=9). Research staff translated transcripts from Spanish into English. Two trained raters reviewed the content and identified themes. Thematic content analysis was used to categorize and organize data.
Results
Participants were largely mono-lingual in Spanish, predominantly from Central and South America and most (68%) had lived in the U.S. for 10 or more years. All women were diagnosed and treated in the U.S. and were an average of 3.1 years from diagnosis. Women’s survivorship experiences appeared to be shaped by cultural beliefs and experiences as immigrants such as secrecy/shame about a breast cancer diagnosis, feelings of isolation, importance of family support (familism), challenges with developing social relationships in the U.S. (less personalismo), and, for some, their partner’s difficulty with showing emotional support (machismo). Navigating the U.S. medical system and language barriers were additional challenges in participants’ health care interactions.
Conclusion
Latina breast cancer survivors adhere to certain cultural values and face unique issues as immigrants, potentially influencing overall quality of life and doctor-patient communication. Efforts to improve Latina immigrant breast cancer survivors’ quality of life could include increased assessment of psychosocial functioning and referral to social support services, culturally-sensitive navigation programs and consistent use of appropriately trained interpreters.
doi:10.1007/s13187-011-0249-4
PMCID: PMC3286609  PMID: 21706194
breast cancer; survivorship; Latinos; quality of life; qualitative
14.  Physical, Mental and Neurocognitive Status and Employment Outcomes in the Childhood Cancer Survivor Study Cohort 
Introduction
We examined the relationship of physical, mental, and neurocognitive function with employment and occupational status in the Childhood Cancer Survivor Study.
Methods
We included survivors ≥25 years of age with available Short Form-36 (physical and mental health component scores), Brief Symptom Inventory (depression, anxiety and somatization), and Neurocognitive Questionnaire (task efficiency, emotional regulation, organization, and memory). We generated relative risks (RR) from generalized linear models for these measures on unemployment (N=5386) and occupation (N=3763) outcomes adjusted for demographic and cancer-related factors, and generated sex-stratified models.
Results
Poor physical health was associated with an almost 8-fold higher risk of health-related unemployment (p<0.001) compared to survivors with normal physical health. Male survivors with somatization and memory problems were approximately 50% (p<0.05 for both) more likely to report this outcome, while task efficiency limitations was significant for both sexes (males: RR=2.43, p<0.001; females: RR=2.28, p<0.001). Employed female survivors with task efficiency, emotional regulation, and memory limitations were 13%-20% (p<0.05 for all) less likely to work in professional or managerial occupations than unaffected females.
Conclusions
Physical problems may cause much of the health-related unemployment among childhood cancer survivors. While both male and female survivors with neurocognitive deficits – primarily in task efficiencies – are at risk for unemployment, employed female survivors with neurocognitive deficits may face poor occupational outcomes more often than males.
Impact
Childhood cancer survivors are at risk for poor employment outcomes. Screening and intervention for physical, mental and neurocognitive limitations could improve employment outcomes for this population.
doi:10.1158/1055-9965.EPI-11-0239
PMCID: PMC3266056  PMID: 21844244
pediatric cancer; employment status; physical health; mental health; neurocognitive function
15.  Parent- Versus Child-Reported Functional Health Status After the Fontan Procedure 
Pediatrics  2009;124(5):e942-e949.
OBJECTIVE
We sought to compare perceptions of functional health status between children who had undergone a Fontan procedure and their parents.
METHODS
Fontan procedure survivors 10 to 18 years of age were included in the study if the child completed the Child Health Questionnaire (CHQ) and the parent completed the parent form to assess the child’s functional health status. Comparisons were made between raw domain scores for the parent- and child-completed CHQs.
RESULTS
Between March 2003 and April 2004, 1078 Fontan survivors were screened. Of the 546 eligible and consented patients, 354 were 10 –18 years of age and 328 parent/child pairs completed the CHQs. Parents reported significantly lower scores (worse functioning) for their children than the children reported for themselves in the domains of physical functioning (P < .01), impact on school or activities from emotional and behavioral problems (P < .01), impact on school or activities from physical health issues (P<.01), general behavior (P < .01), mental health (P < .01), self-esteem (P < .01), and general health perceptions (P<.01). No significant differences were noted for the domains of bodily pain, family cohesiveness, or family activities. For the physical functioning domain, factors contributing to lower scores for parent versus child reports included pulmonary artery anomalies and fenestration at the time of the Fontan operation. Lower parent-reported scores also were associated with more noncardiac health problems in the child.
CONCLUSIONS
Parents’ perceptions of the functional health status of their children after the Fontan procedure were worse than the children’s perceptions.
doi:10.1542/peds.2008-1697
PMCID: PMC2891533  PMID: 19841109
Fontan procedure; congenital heart disease; single ventricle; functional health status; quality of life
16.  Initial validation of the Argentinean Spanish version of the PedsQL™ 4.0 Generic Core Scales in children and adolescents with chronic diseases: acceptability and comprehensibility in low-income settings 
Background
To validate the Argentinean Spanish version of the PedsQL™ 4.0 Generic Core Scales in Argentinean children and adolescents with chronic conditions and to assess the impact of socio-demographic characteristics on the instrument's comprehensibility and acceptability. Reliability, and known-groups, and convergent validity were tested.
Methods
Consecutive sample of 287 children with chronic conditions and 105 healthy children, ages 2–18, and their parents. Chronically ill children were: (1) attending outpatient clinics and (2) had one of the following diagnoses: stem cell transplant, chronic obstructive pulmonary disease, HIV/AIDS, cancer, end stage renal disease, complex congenital cardiopathy. Patients and adult proxies completed the PedsQL™ 4.0 and an overall health status assessment. Physicians were asked to rate degree of health status impairment.
Results
The PedsQL™ 4.0 was feasible (only 9 children, all 5 to 7 year-olds, could not complete the instrument), easy to administer, completed without, or with minimal, help by most children and parents, and required a brief administration time (average 5–6 minutes). People living below the poverty line and/or low literacy needed more help to complete the instrument. Cronbach Alpha's internal consistency values for the total and subscale scores exceeded 0.70 for self-reports of children over 8 years-old and parent-reports of children over 5 years of age. Reliability of proxy-reports of 2–4 year-olds was low but improved when school items were excluded. Internal consistency for 5–7 year-olds was low (α range = 0.28–0.76). Construct validity was good. Child self-report and parent proxy-report PedsQL™ 4.0 scores were moderately but significantly correlated (ρ = 0.39, p < 0.0001) and both significantly correlated with physician's assessment of health impairment and with child self-reported overall health status. The PedsQL™ 4.0 discriminated between healthy and chronically ill children (72.72 and 66.87, for healthy and ill children, respectively, p = 0.01), between different chronic health conditions, and children from lower socioeconomic status.
Conclusion
Results suggest that the Argentinean Spanish PedsQL™ 4.0 is suitable for research purposes in the public health setting for children over 8 years old and parents of children over 5 years old. People with low income and low literacy need help to complete the instrument. Steps to expand the use of the Argentinean Spanish PedsQL™ 4.0 include an alternative approach to scoring for the 2–4 year-olds, further understanding of how to increase reliability for the 5–7 year-olds self-report, and confirmation of other aspects of validity.
doi:10.1186/1477-7525-6-59
PMCID: PMC2533649  PMID: 18687134
17.  Treatment Outcomes and Cost-Effectiveness of Shifting Management of Stable ART Patients to Nurses in South Africa: An Observational Cohort 
PLoS Medicine  2011;8(7):e1001055.
Lawrence Long and colleagues report that “down-referring” stable HIV patients from a doctor-managed, hospital-based ART clinic to a nurse-managed primary health facility provides good health outcomes and cost-effective treatment for patients.
Background
To address human resource and infrastructure shortages, resource-constrained countries are being encouraged to shift HIV care to lesser trained care providers and lower level health care facilities. This study evaluated the cost-effectiveness of down-referring stable antiretroviral therapy (ART) patients from a doctor-managed, hospital-based ART clinic to a nurse-managed primary health care facility in Johannesburg, South Africa.
Methods and Findings
Criteria for down-referral were stable ART (≥11 mo), undetectable viral load within the previous 10 mo, CD4>200 cells/mm3, <5% weight loss over the last three visits, and no opportunistic infections. All patients down-referred from the treatment-initiation site to the down-referral site between 1 February 2008 and 1 January 2009 were compared to a matched sample of patients eligible for down-referral but not down-referred. Outcomes were assigned based on vital and health status 12 mo after down-referral eligibility and the average cost per outcome estimated from patient medical record data.
The down-referral site (n = 712) experienced less death and loss to follow up than the treatment-initiation site (n = 2,136) (1.7% versus 6.2%, relative risk = 0.27, 95% CI 0.15–0.49). The average cost per patient-year for those in care and responding at 12 mo was US$492 for down-referred patients and US$551 for patients remaining at the treatment-initiation site (p<0.0001), a savings of 11%. Down-referral was the cost-effective strategy for eligible patients.
Conclusions
Twelve-month outcomes of stable ART patients who are down-referred to a primary health clinic are as good as, or better than, the outcomes of similar patients who are maintained at a hospital-based ART clinic. The cost of treatment with down-referral is lower across all outcomes and would save 11% for patients who remain in care and respond to treatment. These results suggest that this strategy would increase treatment capacity and conserve resources without compromising patient outcomes.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
AIDS has killed more than 25 million people since 1981, and about 33 million people are now infected with HIV, the virus that causes AIDS. Because HIV destroys immune system cells, which leaves infected individuals susceptible to other infections, early in the AIDS epidemic, most HIV-infected people died within ten years of infection. Then, in 1996, antiretroviral therapy (ART), which can keep HIV in check for many years, became available. For people living in developed countries, HIV infection became a chronic condition, but people in developing countries were not so lucky—ART was prohibitively expensive and so a diagnosis of HIV infection remained a death sentence in many regions of the world. In 2003, this situation was declared a global health emergency, and governments, international agencies, and funding bodies began to implement plans to increase ART coverage in developing countries. As a result, nowadays, more than a third of people in low- and middle-income countries who need ART are receiving it.
Why Was This Study Done?
Unfortunately, shortages of human resources in developing countries are impeding progress toward universal ART coverage. In sub-Saharan Africa, for example, where two-thirds of all HIV-positive people live, there are too few doctors to supervise all the ART that is required. Various organizations are therefore encouraging a shift of clinical care responsibilities for people receiving ART from doctors to less highly trained, less expensive, and more numerous members of the clinical workforce. Thus, in South Africa, plans are underway to reduce the role of hospital doctors in ART and to increase the role of primary health clinic nurses. One specific strategy involves “down-referring” patients whose HIV infection is under control (“stable ART patients”) from a doctor-managed, hospital-based ART clinic to a nurse-managed primary health care facility. In this observational study, the researchers investigate the effect of this strategy on treatment outcomes and costs by retrospectively analyzing data collected from a cohort (group) of adult patients initially treated by doctors at the Themba Lethu Clinic in Johannesburg and then down-referred to a nearby primary health clinic where nurses supervised their treatment.
What Did the Researchers Do and Find?
Patients attending the hospital-based ART clinic were invited to transfer to the down-referral site if they had been on ART for at least 11 months and met criteria that indicated that ART was controlling their HIV infection. Each of the 712 stable ART patients who agreed to be down-referred to the primary health clinic was matched to three patients eligible for down-referral but not down-referred (2,136 patients), and clinical outcomes and costs in the patient groups were compared 12 months after down-referral eligibility. At this time point, 1.7% of the down-referred patients had died or had been lost to follow up compared to 6.2% of the patients who continued to receive hospital-based ART. The average cost per patient-year for those in care and responding at 12 months was US$492 for down-referred patients but US$551 for patients remaining at the hospital. Finally, the down-referral site spent US$509 to produce a patient who was in care and responding one year after down-referral on average, whereas the hospital spent US$602 for each responding patient. Thus, the down-referral strategy (nurse-managed care) was more cost-effective than continued hospital treatment (doctor-managed care).
What Do These Findings Mean?
These findings indicate that, at least for this pair of study sites, the 12-month outcomes of stable ART patients who were down-referred to a primary health clinic were as good as or better than the outcomes of similar patients who remained at a hospital-based ART clinic. Moreover, the down-referral strategy saved 11% of costs for patients who remained in care and responded to treatment and appeared to be cost-effective, although additional studies are needed to confirm this last finding. Because this is an observational study (that is, patients eligible for down-referral were not randomly assigned to hospital or primary care facility treatment), it is possible that some unknown factor was responsible for the difference in outcomes between the two patient groups. Nevertheless, these results suggest that the down-referral strategy tested in this study could increase ART capacity and conserve resources without compromising patient outcomes in South Africa and possibly in other resource-limited settings.
Additional Information
Please access these Web sites via the online version of this summary at http://dx.doi.org/journal.pmed.pmed.1001055.
This study is further discussed in a PLoS Medicine Perspective by Ford and Mills
The US National Institute of Allergy and Infectious Diseases provides information on HIV infection and AIDS
HIV InSite has comprehensive information on HIV/AIDS
Information is available from Avert, an international AIDS charity, on many aspects of HIV/AIDS, including information on HIV and AIDS in Africa and on universal access to AIDS treatment (in English and Spanish)
The World Health Organization provides information about universal access to AIDS treatment, including its 2010 progress report (in English, French and Spanish)
Right to Care, a non-profit organization that aims to deliver and support quality clinical services in Southern Africa for the prevention, treatment, and management of HIV, provides information on down-referral
doi:10.1371/journal.pmed.1001055
PMCID: PMC3139666  PMID: 21811402
18.  Risk Factors Associated With Injury Attributable to Falling Among Elderly Population With History of Stroke 
Background and Purpose
Stroke survivors are at high risk for falling. Identifying physical, clinical, and social factors that predispose stroke patients to falls may reduce further disability and life-threatening complications, and improve overall quality of life.
Methods
We used 5 biennial waves (1998–2006) from the Health and Retirement Study to assess risk factors associated with falling accidents and fall-related injuries among stroke survivors. We abstracted demographic data, living status, self-evaluated general health, and comorbid conditions. We analyzed the rate ratio (RR) of falling and the OR of injury within 2 follow-up years using a multivariate random effects model.
Results
We identified 1174 stroke survivors (mean age±SD, 74.4±7.2 years; 53% female). The 2-year risks of falling, subsequent injury, and broken hip attributable to fall were 46%, 15%, and 2.1% among the subjects, respectively. Factors associated with an increased frequency of falling were living with spouse as compared to living alone (RR, 1.4), poor general health (RR, 1.1), time from first stroke (RR, 1.2), psychiatric problems (RR, 1.7), urinary incontinence (RR, 1.4), pain (RR, 1.4), motor impairment (RR, 1.2), and past frequency of ≥3 falls (RR, 1.3). Risk factors associated with fall-related injury were female gender (OR, 1.5), poor general health (OR, 1.2), past injury from fall (OR, 3.2), past frequency of ≥3 falls (OR, 3.1), psychiatric problems (OR, 1.4), urinary incontinence (OR, 1.4), impaired hearing (OR, 1.6), pain (OR, 1.8), motor impairment (OR, 1.3), and presence of multiple strokes (OR, 3.2).
Conclusions
This study demonstrates the high prevalence of falls and fall-related injuries in stroke survivors, and identifies factors that increase the risk. Modifying these factors may prevent falls, which could lead to improved quality of life and less caregiver burden and cost in this population.
doi:10.1161/STROKEAHA.109.559195
PMCID: PMC2929376  PMID: 19628798
falling; risk factors; fall-related injury; stroke
19.  ‘Will I be able to have a baby?’ Results from online focus group discussions with childhood cancer survivors in Sweden 
Human Reproduction (Oxford, England)  2014;29(12):2704-2711.
STUDY QUESTION
What do adolescent and young adult survivors of childhood cancer think about the risk of being infertile?
SUMMARY ANSWER
The potential infertility, as well as the experience of having had cancer, affects well-being, intimate relationships and the desire to have children in the future.
WHAT IS KNOWN ALREADY
Many childhood cancer survivors want to have children and worry about possible infertility.
STUDY DESIGN, SIZE, DURATION
For this qualitative study with a cross-sectional design, data were collected through 39 online focus group discussions during 2013.
PARTICIPANTS/MATERIALS, SETTING, METHODS
Cancer survivors previously treated for selected diagnoses were identified from The Swedish Childhood Cancer Register (16–24 years old at inclusion, ≥5 years after diagnosis) and approached regarding study participation. Online focus group discussions of mixed sex (n = 133) were performed on a chat platform in real time. Texts from the group discussions were analysed using qualitative content analysis.
MAIN RESULTS AND THE ROLE OF CHANCE
The analysis resulted in the main category Is it possible to have a baby? including five generic categories: Risk of infertility affects well-being, Dealing with possible infertility, Disclosure of possible infertility is a challenge, Issues related to heredity and Parenthood may be affected. The risk of infertility was described as having a negative impact on well-being and intimate relationships. Furthermore, the participants described hesitation about becoming a parent due to perceived or anticipated physical and psychological consequences of having had cancer.
LIMITATIONS, REASONS FOR CAUTION
Given the sensitive topic of the study, the response rate (36%) is considered acceptable. The sample included participants who varied with regard to received fertility-related information, current fertility status and concerns related to the risk of being infertile.
WIDER IMPLICATIONS OF THE FINDINGS
The results may be transferred to similar contexts with other groups of patients of childbearing age and a risk of impaired fertility due to disease. The findings imply that achieving parenthood, whether or not with biological children, is an area that needs to be addressed by health care services.
STUDY FUNDING/COMPETING INTEREST(S)
The study was financially supported by The Cancer Research Foundations of Radiumhemmet, The Swedish Childhood Cancer Foundation and the Doctoral School in Health Care Science, Karolinska Institutet. The authors report no conflicts of interest.
doi:10.1093/humrep/deu280
PMCID: PMC4227581  PMID: 25344069
childhood cancer; infertility; focus group discussions; adolescents and young adults; qualitative research
20.  Adolescent behavior and adult health status in childhood cancer survivors 
Introduction
This study examined the longitudinal association between adolescent psychological problems following cancer treatment and obesity, limited exercise, smoking, and excess sun exposure during adulthood in the Childhood Cancer Survivor Study cohort.
Methods
Participants included 1,652 adolescent survivors of childhood cancer and 406 siblings of cancer survivors, initially evaluated at 12-17 years of age and ≥ 5 years post-diagnosis. A follow-up survey of these participants was conducted roughly 7 years later and included assessment of health status and health behaviors. Logistic regression models were used to assess the association between adolescent psychological problems and adult health behavior outcomes.
Results
During adolescence, survivors demonstrated higher rates of attention deficits, emotional problems, externalizing behavior and social withdrawal compared to sibling controls. Social withdrawal was associated with adult obesity (OR = 1.5, 95% CI = 1.1 - 2.1) and physical inactivity (OR = 1.7, 1.1 - 2.5). Use of stimulant medication during adolescence was also associated with adult obesity (OR = 1.9, 1.1 – 3.2), while antidepressant use was associated with physical inactivity (OR = 3.2, 1.2 – 8.2).
Discussion/Conclusions
Adolescent survivors of childhood cancer display higher rates of psychological problems compared to siblings of cancer survivors. These psychological problems are associated with an increased risk for obesity and poor heath behavior in adulthood, which may increase future risk for chronic health conditions and secondary neoplasms.
Implications
In order to decrease risk of future health problems, adolescent survivors of childhood cancer should be routinely screened and treated for psychological problems following cancer therapy.
doi:10.1007/s11764-010-0123-0
PMCID: PMC3098531  PMID: 20383785
Adolescence; Cancer; Psychological problems; Obesity; Oncology; Childhood Cancer Survivor Study
21.  Determinants of demand for total hip and knee arthroplasty: a systematic literature review 
Background
Documented age, gender, race and socio-economic disparities in total joint arthroplasty (TJA), suggest that those who need the surgery may not receive it, and present a challenge to explain the causes of unmet need. It is not clear whether doctors limit treatment opportunities to patients, nor is it known the effect that patient beliefs and expectations about the operation, including their paid work status and retirement plans, have on the decision to undergo TJA. Identifying socio-economic and other determinants of demand would inform the design of effective and efficient health policy. This review was conducted to identify the factors that lead patients in need to undergo TJA.
Methods
An electronic search of the Embase and Medline (Ovid) bibliographic databases conducted in September 2011 identified studies in the English language that reported on factors driving patients in need of hip or knee replacement to undergo surgery. The review included reports of elective surgery rates in eligible patients or, controlling for disease severity, in general subjects, and stated clinical experts’ and patients’ opinions on suitability for or willingness to undergo TJA. Quantitative and qualitative studies were reviewed, but quantitative studies involving fewer than 20 subjects were excluded. The quality of individual studies was assessed on the basis of study design (i.e., prospective versus retrospective), reporting of attrition, adjustment for and report of confounding effects, and reported measures of need (self-reported versus doctor-assessed). Reported estimates of effect on the probability of surgery from analyses adjusting for confounders were summarised in narrative form and synthesised in odds ratio (OR) forest plots for individual determinants.
Results
The review included 26 quantitative studies−23 on individuals’ decisions or views on having the operation and three about health professionals’ opinions-and 10 qualitative studies. Ethnic and racial disparities in TJA use are associated with socio-economic access factors and expectations about the process and outcomes of surgery. In the United States, health insurance coverage affects demand, including that from the Medicare population, for whom having supplemental Medicaid coverage increases the likelihood of undergoing TJA. Patients with post-secondary education are more likely to demand hip or knee surgery than those without it (range of OR 0.87-2.38). Women are as willing to undergo surgery as men, but they are less likely to be offered surgery by specialists than men with the same need. There is considerable variation in patient demand with age, with distinct patterns for hip and knee. Paid employment appears to increase the chances of undergoing surgery, but no study was found that investigated the relationship between retirement plans and demand for TJA. There is evidence of substantial geographical variation in access to joint replacement within the territory covered by a public national health system, which is unlikely to be explained by differences in preference or unmeasured need alone. The literature tends to focus on associations, rather than testing of causal relationships, and is insufficient to assess the relative importance of determinants.
Conclusions
Patients’ use of hip and knee replacement is a function of their socio-economic circumstances, which reinforce disparities by gender and race originating in the doctor-patient interaction. Willingness to undergo surgery declines steeply after the age of retirement, at the time some eligible patients may lower their expectations of health status achievement. There is some evidence that paid employment independently increases the likelihood of operation. The relative contribution of variations in surgical decision making to differential access across regions within countries deserves further research that controls for clinical need and patient lifestyle preferences, including retirement decisions. Evidence on this question will become increasingly relevant for service planning and policy design in societies with ageing populations.
doi:10.1186/1472-6963-12-225
PMCID: PMC3483199  PMID: 22846144
Orthopaedic implant; Arthroplasty; Hip; Knee; Demand; Need; Equity; Preferences; Patient selection; Osteoarthritis; Decision to operate; Socio-economic disparities; Total joint replacement
22.  The comprehensive assessment of health status in survivors of childhood cancer: application to high-risk acute lymphoblastic leukaemia. 
British Journal of Cancer  1993;67(5):1047-1052.
The health status of 69 survivors of high-risk acute lymphoblastic leukaemia (ALL) is assessed using a multi-attribute classification system. Seven attributes are included: sensation, mobility, emotion, cognition, self-care, pain and fertility. Three to five levels of functioning are defined for each attribute. Comprehensive health states are described as a specific combination of seven attribute levels. The system captures combinations of sequelae. The system provides a compact but comprehensive tool for long term follow up of survivors of childhood cancer. The results underscore the cognitive and emotional burdens of morbidity affecting survivors of high-risk ALL.
PMCID: PMC1968467  PMID: 8494697
23.  Physical and Mental Health Status of Female Adolescent/Young Adult Survivors of Breast and Gynecological Cancer: A National, Population-Based, Case-Control Study 
Purpose
Each year nearly 21,000 adolescents and young adults (AYA) ages 15 to 29 years are diagnosed with cancer. Breast and gynecological cancers account for 25% of the cancers seen in AYA females. The purpose of this study was to compare the current physical and mental health status of female AYA cancer survivors with non-cancer female controls.
Methods
Using data from the population-based 2009 National Health Interview Survey, 100 cases of female AYA survivors of breast and gynecological cancers were identified (FCS group). FCS cases were matched with 300 female respondents without a history of cancer on age, education, marital status, and minority status (NCC group). The FCS and NCC groups were compared on a range of physical and mental health status indices using analysis of covariance and binary logistic regression.
Results
FCS group reported significantly poorer physical and mental health status than the matched controls. Relative to the NCC group, FCS survivors had significantly poorer scores on 7 of 8 mental health outcomes and were more likely to meet criteria for serious psychological distress (OR = 4.23, p ≤ 0.001). FCS group also reported greater lifetime and current prevalence of various medical conditions; more health-related disabilities; and greater functional limitations than the NCC group.
Conclusion
Diagnosis of breast and gynecological cancer during adolescence and young adulthood is associated with clinically important deficits in physical and mental health status. Given the young age of this cancer survivor cohort, increased attention should be devoted to minimizing these deficits.
doi:10.1007/s00520-012-1701-7
PMCID: PMC3644006  PMID: 23306935
cancer; adolescent/young adult; survivorship; breast; gynecological
24.  Cross sectional study of symptom attribution and recognition of depression and anxiety in primary care 
BMJ : British Medical Journal  1999;318(7181):436-440.
Objectives
To examine the effect of patients’ causal attributions of common somatic symptoms on recognition by general practitioners of cases of depression and anxiety and to test the hypothesis that normalising attributions make recognition less likely.
Design
Cross sectional survey.
Setting
One general practice of eight doctors in Bristol.
Subjects
305 general practice attenders.
Main outcome measure
The rate of detection by general practitioners of cases of depression and anxiety as defined by the general health questionnaire.
Results
Consecutive attenders completed the general health questionnaire and the symptom interpretation questionnaire, which scores style of symptom attribution along the dimensions of psychologising, somatising, and normalising. General practitioners detected depression or anxiety in 56 (36%; 95% confidence interval 28% to 44%) of the 157 patients who scored highly on the general health questionnaire. Subjects with a normalising attributional style were less likely to be detected as cases; doctors did not make any psychological diagnosis in 46 (85%; 73% to 93%) of 54 patients who had high questionnaire and high normalising scores. Those with a psychologising style were more likely to be detected; doctors did not detect 21 (38%; 25% to 52%) of 55 patients who had high questionnaire and high psychologising scores. The somatisation scale was not associated with low detection rates. This pattern of results persisted after adjustment for age, sex, general health questionnaire score, and general practitioner.
Conclusions
Normalising attributions minimise symptoms and are non-pathological in character. The normalising attributional style is predominant in general practice attenders and is an important cause of low rates of detection of depression and anxiety.
Key messagesMany patients with psychological disorders present to their general practitioner with common somatic symptoms. This combination has been referred to as “somatisation” and is associated with lower rates of diagnosis of depression and anxietyWhen questioned directly about the cause of their symptoms most patients choose “normalising” attributions, which tend to minimise the importance of the symptoms; somatising attributions are uncommonThe more normalising attributions patients choose, the less likely are general practitioners to diagnose depression or anxiety; the association remain after adjustment for age, sex, general health questionnaire score, and which doctor the patient sawThe normalising attributional style makes a considerable contribution to the non-detection of depression and anxiety. A better understanding of how depressed patients view their symptoms may be the key to understanding low diagnostic rates
PMCID: PMC27737  PMID: 9974461
25.  Value of the time trade off method for measuring utilities in patients with rheumatoid arthritis 
Annals of the Rheumatic Diseases  2000;59(11):892-897.
OBJECTIVE—To assess the feasibility, reliability, and validity of the time trade off (TTO) in patients with rheumatoid arthritis (RA).
METHODS—The TTO was applied in 194 patients with RA with increasing difficulty in performing activities of daily living. The test-retest reliability was determined in 35 of these patients and was calculated by the intraclass correlation coefficient (ICC). Construct validity was evaluated with the following sets of variables: measures of utility (rating scale), quality of life (RAND 36 item Health Status Survey (RAND-36) and RAQoL), functional status (Health Assessment Questionnaire, grip strength, and walk test), and disease activity (doctor's global assessment, disease activity score, pain, and morning stiffness).
RESULTS—Ten patients (5%) did not complete the TTO. The median value of the TTO was 0.77 (range 0.03-1.0). The test-retest ICC of the TTO was 0.85 (p<0.001). Construct validity testing of the TTO showed poor to moderate correlations (Spearman's rs between 0.19 and 0.36, p<0.01) with all outcome measures except for the subscale role limitation (physical problem) of the RAND-36, the walk test, the doctor's global assessment of disease activity, and morning stiffness. Multiple regression analysis showed that only 17% of the variance of the TTO scores could be explained.
CONCLUSIONS—The TTO method appeared to be feasible and reliable in patients with RA. The poor to moderate correlations of the TTO with measures of quality of life, functional ability, and disease activity suggest that the TTO considers additional attributes of health status. This may have implications for the application of the TTO in clinical trials in patients with RA.


doi:10.1136/ard.59.11.892
PMCID: PMC1753018  PMID: 11053068

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