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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.  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
3.  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
4.  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
5.  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
6.  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
7.  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
8.  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
9.  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
10.  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
11.  Physician Awareness of Drug Cost: A Systematic Review 
PLoS Medicine  2007;4(9):e283.
Background
Pharmaceutical costs are the fastest-growing health-care expense in most developed countries. Higher drug costs have been shown to negatively impact patient outcomes. Studies suggest that doctors have a poor understanding of pharmaceutical costs, but the data are variable and there is no consistent pattern in awareness. We designed this systematic review to investigate doctors' knowledge of the relative and absolute costs of medications and to determine the factors that influence awareness.
Methods and Findings
Our search strategy included The Cochrane Library, EconoLit, EMBASE, and MEDLINE as well as reference lists and contact with authors who had published two or more articles on the topic or who had published within 10 y of the commencement of our review. Studies were included if: either doctors, trainees (interns or residents), or medical students were surveyed; there were more than ten survey respondents; cost of pharmaceuticals was estimated; results were expressed quantitatively; there was a clear description of how authors defined “accurate estimates”; and there was a description of how the true cost was determined. Two authors reviewed each article for eligibility and extracted data independently. Cost accuracy outcomes were summarized, but data were not combined in meta-analysis because of extensive heterogeneity. Qualitative data related to physicians and drug costs were also extracted. The final analysis included 24 articles. Cost accuracy was low; 31% of estimates were within 20% or 25% of the true cost, and fewer than 50% were accurate by any definition of cost accuracy. Methodological weaknesses were common, and studies of low methodological quality showed better cost awareness. The most important factor influencing the pattern and accuracy of estimation was the true cost of therapy. High-cost drugs were estimated more accurately than inexpensive ones (74% versus 31%, Chi-square p < 0.001). Doctors consistently overestimated the cost of inexpensive products and underestimated the cost of expensive ones (binomial test, 89/101, p < 0.001). When asked, doctors indicated that they want cost information and feel it would improve their prescribing but that it is not accessible.
Conclusions
Doctors' ignorance of costs, combined with their tendency to underestimate the price of expensive drugs and overestimate the price of inexpensive ones, demonstrate a lack of appreciation of the large difference in cost between inexpensive and expensive drugs. This discrepancy in turn could have profound implications for overall drug expenditures. Much more focus is required in the education of physicians about costs and the access to cost information. Future research should focus on the accessibility and reliability of medical cost information and whether the provision of this information is used by doctors and makes a difference to physician prescribing. Additionally, future work should strive for higher methodological standards to avoid the biases we found in the current literature, including attention to the method of assessing accuracy that allows larger absolute estimation ranges for expensive drugs.
From a review of data from 24 studies, Michael Allan and colleagues conclude that doctors often underestimate the price of expensive drugs and overestimate the price of those that are inexpensive.
Editors' Summary
Background.
Many medicines are extremely expensive, and the cost of buying them is a major (and increasing) proportion of the total cost of health care. Governments and health-care organizations try to find ways of keeping down costs without reducing the effectiveness of the health care they provide, but their efforts to control what is spent on medicines have not been very successful. There are often two or more equally effective drugs available for treating the same condition, and it would obviously help keep costs down if, when a doctor prescribes a medicine, he or she chose the cheapest of the effective drugs available. This choice could result in savings for whoever is paying for the drugs, be it the government, the patient, or a medical insurance organization.
Why Was This Study Done?
Doctors who prescribe drugs cannot be expected to know the exact cost of each drug on the market, but it would he helpful if they had some impression of the cost of a treatment and how the various alternatives compare in price. However, systems deciding how drugs are priced are often very complex. (This is particularly the case in the US.) The researchers wanted to find out how aware doctors are regarding drug costs and the difference between the alternatives. They also wanted to know what factors affected their awareness.
What Did the Researchers Do and Find?
They decided to do a systematic review of all the research already conducted that addressed this issue so that the evidence from all of them could be considered together. In order to do such a review they had to specify precise requirements for the type of study that they would include and then comprehensively search the medical literature for such studies. They found 24 studies that met their requirements. From these studies, they concluded that doctors were usually not accurate when asked to estimate the cost of drugs; doctors came up with estimates that were within 25% of the true cost less than one-third of the time. In particular doctors tended to underestimate the cost of expensive drugs and overestimate the cost of the cheaper alternatives. A further analysis of the studies showed that many doctors said they would appreciate more accurate information on costs to help them choose which drugs to prescribe but that such information was not readily available.
What Do These Findings Mean?
The researchers concluded that their systematic review demonstrates a lack of appreciation by prescribing doctors of the large difference in cost between inexpensive and expensive drugs, and that this finding has serious implications for overall spending on drugs. They call for more education and information to be provided to doctors on the cost of medicines together with better processes to help doctors in making such decisions.
Additional Information.
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.0040283.
A brief guide to systematic reviews has been published by the BMJ (British Medical Journal)
The Web site of the Cochrane Collaboration is a more detailed source of information on systematic reviews; in particular there is a newcomers' guide and information for health-care consumers
The Kaiser Family Foundation, a nonprofit, private operating foundation focusing on the major health care issues in the US, has a section on prescription drugs and their costs
doi:10.1371/journal.pmed.0040283
PMCID: PMC1989748  PMID: 17896856
12.  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
13.  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
14.  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
15.  Health Behaviors and Weight Status of Childhood Cancer Survivors and Their Parents: Similarities and Opportunities for Joint Interventions 
Childhood cancer survivors are at increased risk for chronic health conditions that may be influenced by their cancer treatment and unhealthy lifestyle behaviors. Despite the possibility that interventions targeting the survivor-parent dyad may hold promise for this population, a clearer understanding of the role of family factors and the lifestyle behaviors of both survivors and parents is needed. A mailed cross-sectional survey was conducted in 2009 to assess weight status (body mass index), lifestyle behaviors (e.g., diet, physical activity), and the quality of the parent-child relationship among 170 childhood cancer survivors who were treated at M. D. Anderson Cancer Center and 114 of their parents (80% mothers). Survivors were more physically active and consumed more fruits and vegetables than their parents. However, fewer than half of survivors or parents met national guidelines for diet and physical activity, and their weight status and fat intakes were moderately correlated (r=.30–.57, p<.001). Multilevel models showed that, compared with survivors with better-than-average relationships, those with poorer-than-average relationships with their parents were significantly more likely to consume high-fat diets (p<.05). Survivors and their parents may thus benefit from interventions that address common lifestyle behaviors, as well as issues in the family environment that may contribute to an unhealthy lifestyle.
doi:10.1016/j.jada.2011.09.004
PMCID: PMC3225896  PMID: 22117669
childhood cancer; parent-child relationship; diet; physical activity
16.  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
17.  Health Behaviors and Quality of Life of Cancer Survivors in Massachusetts, 2006: Data Use for Comprehensive Cancer Control 
Preventing Chronic Disease  2009;7(1):A09.
Introduction
Nearly 12 million cancer survivors are living in the United States. Few state-based studies have examined the health status and health-related quality of life (HRQOL) of this growing population. The objective of this study was to use Massachusetts Behavioral Risk Factor Surveillance System (BRFSS) data to describe cancer survivors' demographics, health behaviors, quality of life, use of preventive care services, and influenza vaccination rates.
Methods
The demographic characteristics of cancer survivors and respondents without cancer were estimated on the basis of responses to questions in the 2006 Massachusetts BRFSS. We used multivariate logistic regression to compare health behaviors, comorbidities, quality of life, and cancer screening and influenza vaccination rates for cancer survivors compared with respondents who did not have cancer.
Results
Cancer survivors and respondents who did not have cancer had similar rates of health behavioral risk factors including smoking, obesity, and physical activity. Rates of chronic disease (eg, heart disease, asthma) and disability were higher among cancer survivors. Cancer survivors reported higher rates of influenza vaccination and breast, colorectal, and cervical cancer screening than did respondents who did not have cancer. Survivors' self-reported health status and HRQOL (physical and mental health) improved as length of survivorship increased.
Conclusion
This state-based survey allowed Massachusetts to assess health-related issues for resident cancer survivors. These findings will help state-based public health planners develop interventions to address the long-term physical and psychosocial consequences of cancer diagnosis and treatment.
PMCID: PMC2811504  PMID: 20040224
18.  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
19.  Compliance with National Nutrition Recommendations among Breast Cancer Survivors in STEPPING STONE 
Integrative cancer therapies  2013;13(2):114-120.
Introduction
Compared to White breast cancer survivors, African American survivors are more likely to be overweight and obese. Differences in weight status may be attributed to differences in dietary intake; however, there is limited research pertaining to the dietary habits of African American breast cancer survivors.
Methods
We compared baseline dietary intakes of 31 overweight and obese African American breast cancer survivors enrolled in a healthy lifestyle intervention to national dietary guidelines and also examined beverage intake habits. Dietary intake was assessed using the National Cancer Institute's Diet History Questionnaire (DHQ) and beverage intake was assessed using 3-day food intake records.
Results
Overall, the majority of survivors consumed the recommended daily servings of fruits and vegetables (71.0%) and red meat (83.9%); however, survivors exceeded national recommendations for energy intake from fat (64.5%), saturated fat (87.1%) and added sugars (77.4%). Few women met the guidelines for whole grain and fiber intake (6.5% and 35.5%, respectively). Additionally, survivors consumed ~10% of total energy intake from beverages alone and only ~3.5 cups of water daily.
Conclusions
Current dietary guidelines for cancer survivors recommend consuming >5 servings/day of fruits and vegetables and broad guidelines regarding limiting discretionary fat and added sugars, but do not specify beverage intake recommendations. Future dietary interventions in African American Breast cancer survivors should focus on reducing intake from dietary fat and added sugar, as well as increasing whole grain consumption as a means for increasing daily fiber intake. Furthermore, substituting caloric beverages with water or noncaloric beverages may be a strategy to decrease caloric intake in African American Breast cancer survivors. Nutrition information targeting these nutrients could be administered during treatments or doctor's visits as a means to prevent weight gain that often occurs following diagnosis.
doi:10.1177/1534735413503550
PMCID: PMC4227310  PMID: 24105362
Energy Intake; Added Sugars; Beverages; Breast Cancer; Survivors; Fiber Intake; Water
20.  Controlling for race/ethnicity: a comparison of California commercial health plans CAHPS scores to NCBD benchmarks 
Background
Because California has higher managed care penetration and the race/ethnicity of Californians differs from the rest of the United States, we tested the hypothesis that California's lower health plan Consumer Assessment of Healthcare Providers and Systems (CAHPS®) survey results are attributable to the state's racial/ethnic composition.
Methods
California CAHPS survey responses for commercial health plans were compared to national responses for five selected measures: three global ratings of doctor, health plan and health care, and two composite scores regarding doctor communication and staff courtesy, respect, and helpfulness. We used the 2005 National CAHPS 3.0 Benchmarking Database to assess patient experiences of care. Multiple stepwise logistic regression was used to see if patient experience ratings based on CAHPS responses in California commercial health plans differed from all other states combined.
Results
CAHPS patient experience responses in California were not significantly different than the rest of the nation after adjusting for age, general health rating, individual health plan, education, time in health plan, race/ethnicity, and gender. Both California and national patient experience scores varied by race/ethnicity. In both California and the rest of the nation Blacks tended to be more satisfied, while Asians were less satisfied.
Conclusions
California commercial health plan enrollees rate their experiences of care similarly to enrollees in the rest of the nation when seven different variables including race/ethnicity are considered. These findings support accounting for more than just age, gender and general health rating before comparing health plans from one state to another. Reporting on race/ethnicity disparities in member experiences of care could raise awareness and increase accountability for reducing these racial and ethnic disparities.
doi:10.1186/1475-9276-9-4
PMCID: PMC2835712  PMID: 20181011
21.  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
22.  The use of the SF-36 questionnaire in adult survivors of childhood cancer: evaluation of data quality, score reliability, and scaling assumptions 
Background
The SF-36 has been used in a number of previous studies that have investigated the health status of childhood cancer survivors, but it never has been evaluated regarding data quality, scaling assumptions, and reliability in this population. As health status among childhood cancer survivors is being increasingly investigated, it is important that the measurement instruments are reliable, validated and appropriate for use in this population. The aim of this paper was to determine whether the SF-36 questionnaire is a valid and reliable instrument in assessing self-perceived health status of adult survivors of childhood cancer.
Methods
We examined the SF-36 to see how it performed with respect to (1) data completeness, (2) distribution of the scale scores, (3) item-internal consistency, (4) item-discriminant validity, (5) internal consistency, and (6) scaling assumptions. For this investigation we used SF-36 data from a population-based study of 10,189 adult survivors of childhood cancer.
Results
Overall, missing values ranged per item from 0.5 to 2.9 percent. Ceiling effects were found to be highest in the role limitation-physical (76.7%) and role limitation-emotional (76.5%) scales. All correlations between items and their hypothesised scales exceeded the suggested standard of 0.40 for satisfactory item-consistency. Across all scales, the Cronbach's alpha coefficient of reliability was found to be higher than the suggested value of 0.70.
Consistent across all cancer groups, the physical health related scale scores correlated strongly with the Physical Component Summary (PCS) scale scores and weakly with the Mental Component Summary (MCS) scale scores. Also, the mental health and role limitation-emotional scales correlated strongly with the MCS scale score and weakly with the PCS scale score. Moderate to strong correlations with both summary scores were found for the general health perception, energy/vitality, and social functioning scales.
Conclusion
The findings presented in this paper provide support for the validity and reliability of the SF-36 when used in long-term survivors of childhood cancer. These findings should encourage other researchers and health care practitioners to use the SF-36 when assessing health status in this population, although it should be recognised that ceiling effects can occur.
doi:10.1186/1477-7525-4-77
PMCID: PMC1618832  PMID: 17022814
23.  Health-Related Quality of Life Among Children with Acute Lymphoblastic Leukemia 
Pediatric blood & cancer  2012;59(4):717-724.
BACKGROUND
The objective was to quantify the health-related quality of life (HRQL) of children treated for acute lymphoblastic leukemia (ALL) and identify specific disabilities for remediation.
PROCEDURE
Two types of subjects were included: ALL patients 5 plus years old in a multi-center clinical trial; and general population control groups. Patients were assessed during all 4 major phases of active treatment and approximately 2 years after treatment. Health status and HRQL were measured using HEALTH UTILITIES INDEX® (HUI®) Mark 2 (HUI2) and Mark 3 (HUI3). HRQL scores were used to calculate quality-adjusted life years (QALYs). Excess disability rates identified attributes for remediation.
RESULTS
HUI assessments (n=749) were collected during the 5 phases. Mean HRQL increased from induction through the post-treatment phase (p<0.001). There were no significant demographic or treatment effects on HRQL, except for type of asparaginase during continuation therapy (p=0.005 for HUI2 and p=0.007 for HUI3). Differences in mean HRQL scores between patients and controls were important (p<0.001) during the active treatment phases but not during the post-treatment phase. Relative to controls, patients lost approximately 0.2 QALYs during active treatment. Disability was evident in mobility/ambulation, emotion, self-care and pain, and declined over time.
CONCLUSIONS
Patients with ALL experienced important but declining deficits in HRQL during active treatment phases: equivalent to losing approximately 2 months of life in perfect health. HRQL within the 2-years post-treatment phase was similar to controls. The policy challenge is to develop new treatment protocols producing fewer disabilities in mobility/ambulation, emotion, self-care, and pain without compromising survival.
doi:10.1002/pbc.24096
PMCID: PMC4123756  PMID: 22294502
acute lymphoblastic leukemia; quality of life; outcomes research; disability; survivors; treatment
24.  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
25.  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

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