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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.
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.
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.
UK general practice.
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.
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.
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.
PMCID: PMC3274717  PMID: 22300669
2.  Doctors and patients don't agree: cross sectional study of patients' and doctors' perceptions and assessments of disability in multiple sclerosis. 
BMJ : British Medical Journal  1997;314(7094):1580-1583.
OBJECTIVES: To compare the judgments of clinicians on which domains of health in the short form questionnaire (SF-36) would be most important to patients with multiple sclerosis with the opinions of patients themselves; to compare assessment of physical disability in multiple sclerosis by a clinician using Kurtzke's expanded disability status scale and a non-clinically qualified assistant using the Office of Population Census and Surveys' (OPCS) disability scale with self assessment of disability and other domains of health related quality of life by patients using the SF-36 and the EuroQol questionnaire; and to compare the scores of patients for each domain of the SF-36 with control data matched for age and sex. DESIGN: Cross sectional study. SETTING: Clinical department of neurology, Edinburgh. SUBJECTS: 42 consecutive patients with multiple sclerosis attending a neurology outpatient clinic for review or a neurology ward for rehabilitation. MAIN OUTCOME MEASURES: Scores on the SF-36; EuroQol; Kurtzke's expanded disability status scale; the OPCS disability scale. RESULTS: Patients and clinicians disagreed on which domains of health status were most important (chi 2 = 21, df = 7, P = 0.003). Patients' assessment of their physical disability using the physical functioning domain of the SF-36 was highly correlated with the clinicians' assessment (r = -0.87, P < 0.001) and the non-clinical assessment (r = -0.90, P < 0.001). However, none of the measures of physical disability correlated with overall health related quality of life measured with EuroQol, Quality of life correlated with vitality, general health, and mental health in the SF-36, each of which patients rated as more important than clinicians and for each of which patients scored lower than the controls. CONCLUSIONS: Patients with multiple sclerosis and possibly those with other chronic diseases are less concerned than their clinicians about physical disability in their illness. Clinical trials in multiple sclerosis should assess the effect of treatment on the other elements of health status that patients consider important, which are also affected by the disease process, are more closely related to overall health related quality of life, and may well be adversely affected by side effects of treatment.
PMCID: PMC2126825  PMID: 9169401
3.  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.
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.
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.
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.
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.
PMCID: PMC2714447  PMID: 19557519
Cancer; Disease progression; Health status; Long-term survivors; Quality of life; Recurrence
4.  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.
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.
Cross-sectional single-center cohort study of short-term ALL survivors using HUI3 proxy assessments.
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).
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.
PMCID: PMC3607731  PMID: 22547048
Quality of life; Acute lymphoblastic leukemia; Health Utilities Index; Survivor; Childhood cancer; Pediatric
5.  Patient-reported outcome 2 years after lung transplantation: does the underlying diagnosis matter? 
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.
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.
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.
Descriptions of patients’ HRQL among different diagnosis groups could be used by clinicians to assist individualized patient care.
PMCID: PMC3508652  PMID: 23204877
patient-reported outcomes; health-related quality of life measures; underlying diagnoses in lung transplant recipients; health utilities index
6.  Health-related quality of life of child and adolescent retinoblastoma survivors in the Netherlands 
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.
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.
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.
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.
PMCID: PMC2219958  PMID: 18053178
7.  Neurocognitive Status in Long-Term Survivors of Childhood CNS Malignancies: A Report from the Childhood Cancer Survivor Study 
Neuropsychology  2009;23(6):705-717.
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.
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).
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.
PMCID: PMC2796110  PMID: 19899829
Neurocognitive functioning; brain tumors; CNS malignancies; Childhood Cancer Survivor Study
8.  Neurocognitive Functioning in Adult Survivors of Childhood Non-Central Nervous System Cancers 
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.
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.
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.
A statistically and clinically significantly higher percentage of self-reported neurocognitive impairment was found among survivors of non-CNS cancers than among siblings.
PMCID: PMC2886093  PMID: 20458059
9.  Health-Related Quality of Life Among Children with Acute Lymphoblastic Leukemia 
Pediatric blood & cancer  2012;59(4):717-724.
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.
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.
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.
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.
PMCID: PMC4123756  PMID: 22294502
acute lymphoblastic leukemia; quality of life; outcomes research; disability; survivors; treatment
10.  Concerns over confidentiality may deter adolescents from consulting their doctors. A qualitative exploration 
Journal of Medical Ethics  2006;32(3):133-137.
Young people who are concerned that consultations may not remain confidential are reluctant to consult their doctors, especially about sensitive issues. This study sought to identify issues and concerns of adolescents, and their parents, in relation to confidentiality and teenagers' personal health information.
Recruitment was conducted in paediatric dermatology and general surgery outpatient clinics, and on general surgery paediatric wards. Interviews were conducted in subjects' own homes.
Semistructured interviews were used for this exploratory qualitative study. Interviews were carried out with 11 young women and nine young men aged 14–17. Parents of 18 of the young people were interviewed separately. Transcripts of tape recorded interviews provided the basis for a framework analysis.
Young women were more concerned than young men, and older teenagers more concerned than younger teenagers, about people other than their general practitioner (GP) having access to their health information. Young people with little experience of the healthcare system were less happy than those with greater knowledge of the National Health Service (NHS) for non‐medical staff to access their health information. As they grow older, adolescents become increasingly concerned that their health information should remain confidential.
Young people's willingness to be open in consultations could be enhanced by doctors taking time to explain to them that their discussion is completely confidential. Alternatively, if for any reason confidentiality cannot be assured, doctors should explain why.
PMCID: PMC2564464  PMID: 16507655
confidentiality; medical records; young people; rights of children; parental view
11.  Physical, Mental and Neurocognitive Status and Employment Outcomes in the Childhood Cancer Survivor Study Cohort 
We examined the relationship of physical, mental, and neurocognitive function with employment and occupational status in the Childhood Cancer Survivor Study.
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.
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.
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.
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.
PMCID: PMC3266056  PMID: 21844244
pediatric cancer; employment status; physical health; mental health; neurocognitive function
12.  Parent- Versus Child-Reported Functional Health Status After the Fontan Procedure 
Pediatrics  2009;124(5):e942-e949.
We sought to compare perceptions of functional health status between children who had undergone a Fontan procedure and their parents.
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.
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.
Parents’ perceptions of the functional health status of their children after the Fontan procedure were worse than the children’s perceptions.
PMCID: PMC2891533  PMID: 19841109
Fontan procedure; congenital heart disease; single ventricle; functional health status; quality of life
13.  How Do Doctors in Different Countries Manage the Same Patient? Results of a Factorial Experiment 
Health Services Research  2006;41(6):2182-2200.
To determine the relative contributions of: (1) patient attributes; (2) provider characteristics; and (3) health care systems to health care disparities in the management of coronary heart disease (CHD) and depression.
Data Sources/Study Setting
Primary experimental data were collected in 2001–2 from 256 randomly sampled primary care providers in the U.S. (Massachusetts) and the U.K. (Surrey, Southeast London, and the West Midlands).
Study Design
Two factorial experiments were conducted in which physicians were shown, in random order, two clinically authentic videotapes of “patients” presenting with symptoms strongly suggestive of CHD and depression. “Patient” characteristics (age, gender, race, and socioeconomic status [SES]) were systematically varied, permitting estimation of unconfounded main effects and the interaction of patient, provider, and system-level influences.
Data Collection/Data Extraction Methods
Analysis of variance was used to measure provider decision-making outcomes, including diagnosis, information seeking, test ordering, prescribing behavior, lifestyle recommendations, and referrals/follow-ups.
Principal Findings
There is a high level of consistency in decision making for CHD and depression between the U.S. and the U.K. Most physicians in both countries correctly identified conditions depicted in the vignettes, although U.S. doctors engage in more information seeking, are more likely to prescribe medications, and are more certain of their diagnoses than their U.K. counterparts. The absence of any national differences in test ordering is consistent for both of the medical conditions depicted. U.K. physicians, however, were more likely than U.S. physicians to make lifestyle recommendations for CHD and to refer those patients to other providers.
Substantively, these findings point to the importance of patient and provider characteristics in understanding between-country differences in clinical decision making. Methodologically, our use of a factorial experiment highlights the potential of these methods for health services research—especially the estimation of the influence of patient attributes, provider characteristics, and between-country differences in the quality of medical care.
PMCID: PMC1955316  PMID: 17116115
Clinical decision making; health disparities; clinical encounter
14.  Psychological Outcomes and Health Beliefs in Adolescent and Young Adult Survivors of Childhood Cancer and Controls 
Journal of Clinical Oncology  2010;28(12):2002-2007.
The purpose of this study was to compare adolescent and young adult (AYA) pediatric cancer survivors and peers without a history of serious illness on psychological distress, health-related quality of life (HRQOL), health beliefs; examine age at diagnosis and cancer treatment intensity on these outcomes; and examine relationships between number of health problems and the outcomes.
Patients and Methods
AYA cancer survivors (n = 167) and controls (n = 170), recruited during visits to a cancer survivorship clinic and primary care, completed self-report questionnaires of distress, health problems, and health beliefs. For survivors, providers rated treatment intensity and health problems.
There were no statistically significant differences between survivors and controls in psychological distress or HRQOL. Cancer survivors had less positive health beliefs. Survivors diagnosed as adolescents had significantly greater psychological distress and fewer positive health beliefs than those diagnosed earlier. Survivors with the highest level of treatment intensity had greater anxiety and fewer positive health beliefs than those with less intense treatments. Provider report of current health problems related to survivors' beliefs and mental HRQOL only, whereas patient report of health problems correlated significantly with most psychosocial outcomes and beliefs.
AYA cancer survivors did not differ from peers in psychological adjustment but did endorse less adaptive health beliefs. Survivors diagnosed during adolescence and who had more intensive cancer treatments evidenced poorer psychosocial outcomes. Beliefs about health may be identified and targeted for intervention to improve quality of life, particularly when patient perceptions of current health problems are considered.
PMCID: PMC2860405  PMID: 20231679
15.  Online Doctor Reviews: Do They Track Surgeon Volume, a Proxy for Quality of Care? 
Increasingly, consumers are accessing the Internet seeking health information. Consumers are also using online doctor review websites to help select their physician. Such websites tally numerical ratings and comments from past patients. To our knowledge, no study has previously analyzed whether doctors with positive online reputations on doctor review websites actually deliver higher quality of care typically associated with better clinical outcomes and better safety records.
For a number of procedures, surgeons who perform more procedures have better clinical outcomes and safety records than those who perform fewer procedures. Our objective was to determine if surgeon volume, as a proxy for clinical outcomes and patient safety, correlates with online reputation.
We investigated the numerical ratings and comments on 9 online review websites for high- and low-volume surgeons for three procedures: lumbar surgery, total knee replacement, and bariatric surgery. High-volume surgeons were randomly selected from the group within the highest quartile of claims submitted for reimbursement using the procedures’ relevant current procedural terminology (CPT) codes. Low-volume surgeons were randomly selected from the lowest quartile of submitted claims for the procedures’ relevant CPT codes. Claims were collated within the Normative Health Information Database, covering multiple payers for more than 25 million insured patients.
Numerical ratings were found for the majority of physicians in our sample (547/600, 91.2%) and comments were found for 385/600 (64.2%) of the physicians. We found that high-volume (HV) surgeons could be differentiated from low-volume (LV) surgeons independently by analyzing: (1) the total number of numerical ratings per website (HV: mean = 5.85; LV: mean = 4.87, P<.001); (2) the total number of text comments per website (HV: mean = 2.74; LV: mean = 2.30, P=.05); (3) the proportion of glowing praise/total comments about quality of care (HV: mean = 0.64; LV: mean = 0.51, P=.002); and (4) the proportion of scathing criticism/total comments about quality of care (HV: mean = 0.14; LV: mean = 0.23, P= .005). Even when these features were combined, the effect size, although significant, was still weak. The results revealed that one could accurately identify a physician’s patient volume via discriminant and classification analysis 61.6% of the time. We also found that high-volume surgeons could not be differentiated from low-volume surgeons by analyzing (1) standardized z score numerical ratings (HV: mean = 0.07; LV: mean = 0, P=.27); (2) proportion of glowing praise/total comments about customer service (HV: mean = 0.24; LV: mean = 0.22, P=.52); and (3) proportion of scathing criticism/total comments about customer service (HV: mean = 0.19; LV: mean = 0.21, P=.48).
Online review websites provide a rich source of data that may be able to track quality of care, although the effect size is weak and not consistent for all review website metrics.
PMCID: PMC3376525  PMID: 22491423
Doctor review; rating websites; physician reviews; online reputation; clinical outcomes; selection of physicians; surgical volume; surgeon volume
16.  Revisiting current “barefoot doctors” in border areas of China: system of services, financial issue and clinical practice prior to introducing integrated management of childhood illness (IMCI) 
BMC Public Health  2012;12:620.
Under-5-years child mortality remains high in rural China. Integrated management of childhood illness (IMCI) was introduced to China in 1998, but only a few rural areas have been included. This study aimed at assessing the current situation of the health system of rural health care and evaluating the clinical competency of village doctors in management of childhood illnesses prior to implementing IMCI programme in remote border rural areas.
The study was carried out in the border areas of Puer prefecture of Yunnan province. There were 182 village doctors in the list of the health bureau in these border areas. Of these, 154 (84.6%) were recruited into the study. The local health system components were investigated using a qualitative approach and analyzed with triangulation of information from different sources. The clinical component was assessed objectively and quantitatively presented using descriptive statistics.
The study found that the New Rural Cooperative Medical Scheme (NRCMS) coordinated the health insurance system and the provider service through 3 tiers: village doctor, township and county hospitals. The 30 RMB per person per year premium did not cover the referral cost, and thereby decreased the number of referrals. In contrast to available treatment facilities and drug supply, the level of basic medical education of village doctors and township doctors was low. Discontent among village doctors was common, especially concerning low rates of return from the service, exceptions being procedures such as injections, which in fact may create moral hazards to the patients. Direct observation on the assessment and management of paediatric patients by village doctors revealed inadequate history taking and physical examination, inability to detect potentially serious complications, overprescription of injection and antibiotics, and underprescription of oral rehydration salts and poor quality of counseling.
There is a need to improve health finance and clinical competency of the village doctors in the study area.
PMCID: PMC3490804  PMID: 22871045
Village doctor; Integrated management of childhood illness; Health service; Clinical competency
17.  Chronically ill Canadians’ experiences of being unattached to a family doctor: a qualitative study of marginalized patients in British Columbia 
BMC Family Practice  2012;13:69.
Unattached patients do not have a regular primary care provider. Initiatives are being developed to increase attachment rates across Canada. Most existing attention paid to patient unattachment has focused on quantifying the problem and health system costs. Our purpose is to qualitatively identify the implications of chronically ill patients’ experiences of unattachment for health policy and planning to provide policy-relevant insights for Canadian attachment initiatives.
Three focus groups were conducted with marginalized chronically ill individuals residing in a mid-sized city in British Columbia who are unattached to a family doctor. We use the term marginalized as a descriptor to acknowledge that by virtue of their low socio-economic status and lack of attachment the participants are marginalized in Canada’s health care system Focus groups were structured as an open conversation organized around a series of probing questions. They were digitally recorded and transcribed verbatim. Thematic analysis was employed.
Twenty-six individuals participated in the focus groups. The most common chronic illnesses reported were active drug addiction or recovery (and their associated symptoms), depression, arthritis, and hepatitis C. Participants identified life transitions as being the root cause for not having a family doctor. There was a strong sense that unsuccessful attempts to get a family doctor reflected that they were undesirable patients. Participants wanted to experience having a trusting relationship with a regular family doctor as they believed it would encourage greater honesty and transparency. One of the main health concerns regarding lack of access to a regular family doctor is that participants lacked access to preventative care. Participants were also concerned about having a discontinuous medical record due to unattachment.
Participants perceived that there are many benefits to be had by having attachment to a regular family doctor and that experiencing unattachment challenged their health and access to health care. We encourage more research to be done on the lived experience of unattachment in order to provide on-the-ground insights that policy-makers require in order to develop responsive, patient-centred supports and programs.
PMCID: PMC3412741  PMID: 22799280
18.  Parents' concerns about children are highly prevalent but often not confirmed by child doctors and nurses 
BMC Public Health  2008;8:124.
The aim of this study was to assess the prevalence in the general population of parents' concerns about the development of their child, to identify groups at risk and to assess the association between parents' concerns and professional judgement.
We obtained cross-sectional data on a Dutch nationally representative sample of children aged 14 months, 3 3/4, 5–6 and 8–12 years within the setting of routine well-child visits provided to the entire population. A total of 4,107 participated (response rate 85.3%). Data were about concerns that parents reported by questionnaire before the visit regarding behavioural and emotional problems, developmental delay, consequences of disease and contact with peers that needed professional assistance, and about the assessment of these domains by doctors and nurses during the visit. Moreover, we obtained data on parent-reported psychosocial problems using the Infant-Toddler Social and Emotional Assessment and the Child Behavior Checklist.
Of all parents, 49.3% reported some concerns and 8.7% reported frequent concerns, most frequently on child behaviour. Frequent concerns were most likely to refer to young children, children from labour immigrant families, with fathers of medium educational level and in low-income families. The prevalence rates of professional-assessed parenting problems were much lower than parent-reported ones. The rates of psychosocial problems were highest in the case of shared concerns, but also higher if parents expressed concerns that were not confirmed by professionals.
A very large proportion of parents of young children have concerns regarding their child, but agreement on these concerns with child health professionals is relatively low.
PMCID: PMC2383909  PMID: 18423036
19.  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.
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.
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).
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.
PMCID: PMC2929376  PMID: 19628798
falling; risk factors; fall-related injury; stroke
20.  Physical and Mental Health Status of Female Adolescent/Young Adult Survivors of Breast and Gynecological Cancer: A National, Population-Based, Case-Control Study 
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.
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.
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.
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.
PMCID: PMC3644006  PMID: 23306935
cancer; adolescent/young adult; survivorship; breast; gynecological
21.  Adolescent behavior and adult health status in childhood cancer survivors 
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.
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.
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).
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.
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.
PMCID: PMC3098531  PMID: 20383785
Adolescence; Cancer; Psychological problems; Obesity; Oncology; Childhood Cancer Survivor Study
22.  Predictors of mortality and short-term physical and cognitive dependence in critically ill persons 75 years and older: a prospective cohort study 
The purpose of this study was to identify predictors of 3-month mortality in critically ill older persons under medical care and to assess the clinical impact of an ICU stay on physical and cognitive dependence and subjective health status in survivors.
We conducted a prospective observational cohort study including all older persons 75 years and older consecutively admitted into ICU during a one-year period, except those admitted after cardiac arrest, All patients were followed for 3 months or until death. Comorbidities were assessed using the Charlson index and physical dependence was evaluated using the Katz index of Activity of Daily Living (ADL). Cognitive dependence was determined by a score based on the individual components of the Lawton index of Daily Living and subjective health status was evaluated using the Nottingham Health Profile (NHP) score.
One hundred patients were included in the analysis. The mean age was 79.3 ± 3.4 years. The median Charlson index was 6 [IQR, 4 to 7] and the mean ADL and cognitive scores were 5.4 ± 1.1 and 1.2 ± 1.4, respectively, corresponding to a population with a high level of comorbidities but low physical and cognitive dependence. Mortality was 61/100 (61%) at 3 months. In multivariate analysis only comorbidities assessed by the Charlson index [Adjusted Odds Ratio, 1.6; 95% CI, 1.2-2.2; p < 0.003] and the number of organ failures assessed by the SOFA score [Adjusted Odds Ratio, 2.5; 95% CI, 1.1-5.2; p < 0.02] were independently associated with 3-month mortality. All 22 patients needing renal support after Day 3 died. Compared with pre-admission, physical (p = 0.04), and cognitive (p = 0.62) dependence in survivors had changed very little at 3 months. In addition, the mean NHP score was 213.1 ± 132.8 at 3 months, suggesting an acceptable perception of their quality of life.
In a selected population of non surgical patients 75 years and older, admission into the ICU is associated with a 3-month survival rate of 38% with little impact on physical and cognitive dependence and subjective health status. Nevertheless, a high comorbidity level (ie, Charlson index), multi-organ failure, and the need for extra-renal support at the early phase of intensive care could be considered as predictors of death.
PMCID: PMC3112374  PMID: 21575208
older persons; intensive care unit; mortality; functional autonomy; quality of life
23.  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
24.  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.
PMCID: PMC3225896  PMID: 22117669
childhood cancer; parent-child relationship; diet; physical activity
To assess the status of knowledge, attitude and practice (KAP) of doctors and nurses in Primary Health Care (PHC) centers with regard to hypertension in pregnancy and to identify factors associated with KAP in Al-Khobar, Saudi Arabia.
Using a self-administered comprehensive questionnaire, all available doctors and nurses in PHC centers of the Al-Khobar area were approached to determine their knowledge, attitude and practice in hypertension during pregnancy. Questionnaires were validated and pilot tested. Each section of the questionnaire was scored and the mean scores calculated. Factors affecting each section were identified by means of multiple regression analysis.
A total of 36 doctors and 91 nurses were enrolled in the study. Saudis formed 22.2% of the doctors and 47.3% of nurses. Mean years of practice after graduation were 12.6 and 8.7 years for doctors and nurses, respectively. Saudi nurses spend only 3 weeks in the obstetrics ward during the whole period of their internship. All Saudi nurses hold only diplomas and not many courses on the hypertensive disorder are offered to both doctors and nurses after graduation. The practice of doctors particularly in the management of patients after reaching a diagnosis and educating them on diet and salt intake was poor. Furthermore, their knowledge was also poor. Though their level of knowledge was poor, the nurses’ practice was satisfactory, particularly in taking history and physical examination. The attitude of both doctors and nurses towards hypertensive disorders was in general, positive and satisfactory towards health education. Nurses’ nationality and duration of post-internship training were the factors that influenced their attitude and scores on knowledge.
Conclusion and recommendation:
The study revealed that both doctors and nurses working in the PHC lacked training and knowledge in this area of their work. It is therefore necessary to give PHC doctors and nurses refresher courses on common and serious problems like hypertension. A longer period of training in action management is needed to improve the knowledge and practice of doctors and nurses working in antenatal clinics in this area.
PMCID: PMC3437072  PMID: 23008595
Pregnancy hypertension; knowledge and practice; Antenatal care; Primary Health Care

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