Related Quality Of Life Data Research Articles

Challenging the current norm: Does health related quality of life data from reference populations accurately reflect baseline values in breast cancer patients? An observational cohort study comparing EORTC QLQ-C30 scores between the general Swedish population and baseline scores in breast cancer patients

BackgroundIncreased overall survival in breast cancer patients has led to a growing recognition of long-term effects of cancer treatment of patients’ quality of life. Health related quality of life (HRQoL) data, as measured by patient reported outcome measures (PROMs), is increasingly incorporated into clinical practice and research. A commonly used method current available to interpret HRQoL PROMs data is by comparison to reference values, often obtained from sampling of the general population. The aim of this study was to assess whether HRQoL reference values derived from the general population are an accurate representation of the baseline values of an outpatient breast clinic population. MethodsA prospective observational cohort study was conducted by obtaining EORTC QLQ-C30 values for all patients offered an appointment in the outpatient breast clinic. These results were then compared to published baseline values in the general Swedish population, matched by gender and age. Results568 questionnaires were returned with a response rate of 81,1 %. The outpatient breast clinic cohort reported a higher grade of symptoms, lower function and lower quality of life compared to the equivalent reference population. ConclusionThis study challenges the assumption that the reference values accurately reflect those of the study population which clinicians and researchers need to account for in study design and clinical practice.

PNS93 Analysis of SF-6D Health State Utility Scores: Is Beta Regression Appropriate?

Typically, modeling of health related quality of life data is often a troublesome since its distribution is positively or negatively skewed, spikes at zero or one, bounded and heteroscedasticity. In the present paper we aim to investigate whether Bayesian beta regression is appropriate for analysing the SF-6D health state utility scores and respondent characteristics. A sample of 126 Lebanese members from the American University of Beirut valued 49 health states defined by the SF-6D using the standard gamble technique. Three different models were fitted for SF-6D via Bayesian Markov chain Monte Carlo (MCMC) simulation methods. These comprised a beta regression, random effects and random effects with covariates. Results from applying the three Bayesian beta regression models were reported and compared based on their predictive ability to previously used linear regression models, using mean prediction error (MPE), root mean squared error (RMSE) and deviance information criterion (DIC). For the three different approaches, the beta regression model was found to perform better than the normal regression model under all criterions used. The beta regression with random effects model performs best, with MPE (0.084), RMSE (0.058) and DIC (1621). Compared to the traditionally linear regression model, the beta regression provided better predictions of observed values in the entire learning sample and in an out-of-sample validation. Beta regression provides flexible approach to modeling health state values. It also accounted for the boundedness and heteroscedasticity of the SF-6D index scores. Further research is encouraged.

Clinical and cost effectiveness of a parent mediated intervention to reduce challenging behaviour in pre-schoolers with moderate to severe intellectual disability (EPICC-ID) study protocol: a multi-centre, parallel-group randomised controlled trial

BackgroundChildren with intellectual disabilities are likely to present with challenging behaviour. Parent mediated interventions have shown utility in influencing child behaviour, although there is a paucity of UK research into challenging behaviour interventions in this population. NICE guidelines favour Stepping Stones Triple P (SSTP) as a challenging behaviour intervention and this trial aims to evaluate its clinical and cost effectiveness in preschool children with moderate to severe intellectual disabilities.MethodsThis trial launched in 2017 at four sites across England, with the aim of recruiting 258 participants (aged 30–59 months). The Intervention Group receive nine weeks of SSTP parenting therapy (six group sessions and three individualised face to face or telephone sessions) in addition to Treatment as Usual, whilst the Treatment as Usual only group receive other available services in each location. Both study groups undergo the study measurements at baseline and at four and twelve months. Outcome measures include parent reports and structured observations of behaviour. Service use and health related quality of life data will also be collected to carry out a cost effectiveness and utility evaluation.DiscussionFindings from this study will inform policy regarding interventions for challenging behaviour in young children with moderate to severe intellectual disabilities.Trial registration numberClinicaltrials.gov, NCT03086876. Registered 22nd March 2017, https://clinicaltrials.gov/ct2/show/NCT03086876.

Is Aquatic Therapy Optimally Prescribed for Parkinson's Disease? A Systematic Review and Meta-Analysis.

Aquatic therapy offers an alternative physiotherapy approach to managing the motor and non-motor symptoms associated with Parkinson's disease (PD). This review examined exercise prescription for aquatic therapy in PD and evaluated if aquatic therapy is as effective as land-based physiotherapy for improving movement, disability and wellbeing in people living with PD. A systematic search of eight databases was conducted to identify suitable randomized controlled trials from inception until August 2019. Aquatic therapy prescription data and outcomes of interest included gait, balance, motor disability, mobility, falls, mood, cognitive function and health related quality of life data was extracted and synthesised. A meta-analysis was performed where appropriate. Fourteen studies involving 472 participants (Hoehn & Yahr scale I-IV) met the inclusion criteria. Eight were of modest quality, scoring 70-80% on the PEDro scale. Seven studies were included in the meta-analysis. Exercise prescription was highly variable and often insufficiently dosed. Similar gains were shown for aquatic therapy and land exercises for balance, motor disability or quality of life. A statistically significant difference was found for mobility as measured using the TUG (-1.5 s, 95 % CI -2.68 to -0.32; p = 0.01, I2 = 13%), in favor of aquatic therapy. Aquatic therapy had positive outcomes for gait, balance and mobility that were comparable to land-based physiotherapy in the early stages of PD. The optimal dosage, content and duration of aquatic interventions for PD could not be confirmed in this meta-analysis. Many trials appeared to be under-dosed and therapy duration was low, ranging from 3-11 weeks.

Treatment of Mild Cervical Myelopathy: Factors Associated With Decision for Surgical Intervention.

Prospective Cohort OBJECTIVE.: The aim of this study was to evaluate which demographic, clinical, or radiographic factors are associated with selection for surgical intervention in patients with mild cervical spondylotic myelopathy (CSM). Surgery has not been shown superior to best conservative management in mild CSM comparative studies; trials of conservative management represent an acceptable alternative to surgical decompression. It is unknown what patients benefit from surgery. This is a prospective study of patients with mild CSM, defined as modified Japanese Orthopaedic Association Score (mJOA) ≥15. Patients were recruited from seven sites contributing to the Canadian Spine Outcomes Research Network. Demographic, clinical, radiographic and health related quality of life data were collected on all patients at baseline. Multivariate logistic regression modeling was used to identify factors associated with surgical intervention. There were 122 patients enrolled, 105 (86.0%) were treated surgically, and 17 (14.0%) were treated nonoperatively. Overall mean age was 54.8 years (SD 12.6) with 80 (65.5%) males. Bivariate analysis revealed no statistically significant differences between surgical and nonoperative groups with respect to age, sex, BMI, smoking status, number of comorbidities and duration of symptoms; mJOA scores were significantly higher in the nonoperative group (16.8 [SD 0.99] vs. 15.9 [SD 0.89], P < 0.001). There was a statistically significant difference in Neck Disability Index, SF12 Physical Component, SF12 Mental Component Score, EQ5D, and PHQ-9 scores between groups; those treated surgically had worse baseline questionnaire scores (P < 0.05). There was no difference in radiographic parameters between groups. Multivariable analysis revealed that lower quality of life scores on EQ5D were associated with selection for surgical management (P < 0.018). Patients treated surgically for mild cervical myelopathy did not differ from those treated nonoperatively with respect to baseline demographic or radiographic parameters. Patients with worse EQ5D scores had higher odds of surgical intervention. 3.

Recruitment and participant baseline characteristics in the dialysis outcomes in those aged 65 years or older study

BackgroundDespite an increasing number of older people commencing dialysis the impact of dialysis on their quality of life and survival, remains unclear. The Dialysis Outcomes in those aged over 65 years or older study is an accelerated prospective cohort longitudinal design study, designed to obtain sufficient health related quality of life data, linked to clinical data, to inform clinicians’ and patients’ decision-making with respect to end stage kidney disease (ESKD), outcomes, and options for management in New Zealand (NZ).MethodsThe study has an accelerated prospective cohort longitudinal design, comprised of cross-sectional and longitudinal components. We report the baseline data on the 225 participants enrolled in the study. Dialysis duration was grouped in tertiles from less than one year (incident patients), 1–3 years and greater than 3 years. Health related quality of life data was obtained from self-reported questionnaires including KDQoL-36, EQ-5D-3 L, FACIT, WHODAS II, and the Personal Well-being Score.ResultsThe median age of the cohort was 71 years and two thirds were male. Three quarters of the participants were on dialysis at the baseline, with 42% of those on home dialysis (haemodialysis or peritoneal dialysis). Māori and Pacific people were over represented (20% Māori and 24% Pacific) in the sample, when compared to the general NZ population of the same age group (where 5% are Māori and 2% are Pacific). At baseline, there were no differences observed in sociodemographic, quality of life or health characteristics between the dialysis groups either by modality or duration of dialysis.ConclusionsWe report the baseline characteristics of participants enrolled prospectively into a longitudinal cohort observational study examining health related quality of life factors with clinical characteristics on dialysis outcomes in a group of New Zealanders aged 65 years or older who are either on dialysis or have been educated about dialysis (BMC Nephrol 14:175, 2013). Subsequent publications are planned, analysing the prospective longitudinal data to identify key factors that determine both outcome and quality of life for individuals of this age group.Trial registrationACTRN12611000024943.

Assessing the quality of life among Pakistani general population and their associated factors by using the World Health Organization\u2019s quality of life instrument (WHOQOL-BREF): a population based cross-sectional study

BackgroundMeasuring quality of life (QOL) in a population is important for the predictions of health and social care needs. In Pakistan, health related quality of life data exist but there are no quality of life data of general population. In this study, quality of life was assessed among the Pakistani general population and their associated factors by using the World Health Organization’s quality of life instrument (WHOQOL-BREF).MethodologyA population-based cross-sectional study was carried out in all 52 Union Councils of District Abbottabad, Khaber Pkutunkhua province, Pakistan from March 2015 to August 2015. Multi-stage cluster sampling technique was employed in this study. Quality of life was measured by using the validated WHOQOL-BREF instrument, along with socioeconomic, demographic, and World Bank social capital questions in this population- based study. The data were collected through households, utilizing face to face interviews. The association between socio-demographic variables and quality of life domains were determined by using both univariate and multivariate analysis. Descriptive statistics were derived, and a multilevel linear regression using backward analysis allowing to obtain final model for each domain was achieved to recognize the variables that affect quality of life score.ResultsA total of 2063 participants were included in this study (51.2% male, 48.2% female). Mean age of participants was 37.9, SD = 13.2; ranging from 18 to 90. Mean score of quality of life domains (physical, psychological, social relationship and environmental domains) were 65.0 (SD = 15.2), 67.4 (SD = 15.0), 72.0 (SD = 16.5), 55.5 (SD = 15.0), respectively. Overall, socioeconomic status was established to be the strongest predictor of poorer quality of life for all domains as a change in SES from high to low results in reduction about (β = − 5.85, β = − 9.03, β = − 8.33, β = − 9.98, p < 0.001). Similarly, type of residency was negatively associated with physical, psychological and environmental domains while age and sex were negatively associated with physical, psychological and relationship domains in final model. Furthermore social capital (β = 0.09, β = 0.13, β =0.14, β =0.15, p < 0.001) had a positive effect on Pakistani quality of life. Overall, subjective quality of life was found to be low in our population and extremely varied by socio-demographic variables.ConclusionsIncreasing age, having average and lower socioeconomic status and living in the rural area were found to be the strong predictor of poorer quality of life in all domains, while total social capital score had a positive effect on Pakistani quality of life scores.

Health-Related Quality of Life in Early-Onset Scoliosis Patients Treated Surgically: EOSQ Scores in Traditional Growing Rod Versus Magnetically Controlled Growing Rods.

Cross-sectional study. To compare quality of life and caregiver burden in traditional growing rod (TGR) and magnetic controlled growing rods (MCGR) patients. MCGR decrease surgical sessions associated with treatment of early onset scoliosis (EOS), hoping to minimize the burdens seen with repetitive invasive surgeries in TGR treatment. Although the clinical indications for these treatments have largely been agreed upon, there is a lack of understanding of their impact on patients' and families' quality of life. Inclusion criteria: ≤10 years of age at index procedure, major curve ≥30°, no previous spine surgery, minimum 1-year postoperative follow-up. The previously validated 24-item early onset scoliosis questionnaire (EOSQ-24) was utilized to assess quality of life. Statistic methods were applied to compare domain scores between TGR and MCGR patients. Forty-four children with EOS were enrolled; 25 TGR and 19 MCGR. Groups were similar in sex and age at index surgery. Age at time of questionnaire and mean length of follow-up were significantly different; patients were older (14.0 vs. 8.8 yr) and had longer follow-up (101.3 vs. 34.3 mo) in TGR (P < 0.01). Deformity correction and complication rates were similar between groups. At the time of questionnaire, scores of economic burden and overall satisfaction in MCGR were significantly superior to those in TGR by univariate analysis. When controlled for duration of follow-up, some domain scores trended towards statistical significance, some remained stable, and others regressed to non-significance. Health related quality of life data reveal superior outcomes in overall satisfaction and financial burden domains in the MCGR group. However, the positive effects of MCGR decrease when controlled for length of follow up, indicating that the MCGR is not yet a magic fix-all, and that the TGR remains an option in the treatment of EOS. 3.

Reference health related quality of life data from the Italian general population in 2015

Reference health related quality of life data from the Italian general population in 2015

The use of health related quality of life data to produce information sheets for patients with head and neck cancer.

Health related quality of life information gives patients and carers an indication of how they will be affected following treatment. Such knowledge can promote realistic expectations and help patients come to terms with their outcome. The aim of this paper is to describe the background development of patient information sheets produced at our unit. The data were compiled using a common head and neck cancer specific quality of life questionnaire (University of Washington Quality of Life [UW-QOL]). There are 12 domains comprising activity, appearance, anxiety, chewing, mood, pain, recreation, saliva, shoulder, speech, swallowing and taste. The data were collected over 19 years at our unit and focus on follow-up records at around 2 years as this gives a good indication of health related quality of life in survivorship. UW-QOL questionnaires were available from 1,511 patients treated following primary diagnosis of head and neck cancer, and there were 24 subgroups based on cancer site, stage and treatment. There were 2 other subgroups: 132 having transoral laser resection and 176 having laryngectomy. The patient and carer research forum helped to design the information sheets, which display overall quality of life, percentages with 'good' outcome and 'significant problem' by domain, and the most important domains. Three examples are included in this paper: early stage oral cancer treated by surgery alone, early laryngeal cancer treated by surgery alone, and late stage oropharyngeal cancer treated by surgery and postoperative radiotherapy. All 26 subgroup information sheets are available in booklet form and on the internet. How the surgical community best utilises this type of resource needs further research.

Impact of Complications and Hospital-Free Days on Health Related Quality of Life 1 Year after Radical Cystectomy

We determined the extent to which complications as well as number of hospital-free days within 30 and 90 days of surgery predicted health related quality of life 1 year after radical cystectomy. We used data from a prospective health related quality of life study using a validated instrument, the Vanderbilt Cystectomy Index-15. Complications were graded by the Clavien system, and hospital length of stay and length of stay during readmissions were used to calculate 30 and 90-day hospital-free days, respectively. We compared the number of hospital-free days among patients with varying levels of complications. Multivariate analysis wasperformed to determine predictors of Vanderbilt Cystectomy Index-15 score 1 year after surgery adjusting for demographic (age, gender, comorbidities) and clinical variables (stage and diversion type). A total of 100 patients with complete baseline and 1-year followup health related quality of life data were included in the analysis. Median (IQR) 30 and 90-day hospital-free days were 24 (22-25) and 84 (82-85), respectively. Patients who experienced any complications had significantly fewer 30-day hospital-free days (22 vs 24 days, p <0.01) and 90-day hospital-free days (81 vs 84 days, p<0.01), and patients with higher grade complications had fewer hospital-free days than those with lower grade or no complications (p <0.01). On multivariate analysis female gender and baseline Vanderbilt Cystectomy Index-15 score independently predicted higher 1-year health related quality of life scores. Patients who experience complications after radical cystectomy have fewer 30 and 90-day hospital-free days. However, neither predicts health related quality of life at 1 year. Instead, long-term health related quality of life appears to be driven largely by baseline health related quality of life and gender.

SAT0443 The impact of musculoskeletal conditions across europe: Availability of routinely collected data. The eumusc.net project

BackgroundEUMUSC.NET is a 3 year project to raise and harmonise the equity and quality of care for MSC across the 27 EU Member States. A key aim is to raise...

Validity and reliability of the EQ-5D-3L™ among a paediatric injury population

BackgroundInjuries are a leading cause of death and disabilities for children and youth globally. Measuring the health related quality of life of injured children and youth can help gain understanding of the impact of injuries on this population; however, psychometric evaluation of health related quality of life tools among this population is lacking. The purpose of this study was to determine the construct validity of the EQ-5D-3L™ for use among a population of injured young people and to examine the reliability of different modes of administration including paper and pencil, online and telephone.MethodsIn total, 345 participants (aged 0 – 16) were recruited from a paediatric hospital in a large urban centre in British Columbia, Canada. To capture a variety of injury types and severity, patients were recruited from in-patient units and the emergency department. Data were collected at the time of recruitment and at one month post injury.ResultsRepeated measures analysis (rANOVA) showed that EQ-5D-3L™ scores were different before and after injury and significant between group differences (Visual Analog Scale: F = 4.61, p = 0.011; Descriptive Scale: F = 29.58, p < 0.001), within group differences (Visual Analog Scale: F = 60.02, p < 0.001; Descriptive Scale: F = 92.37, p < 0.001), and interaction between variables (Visual Analog Scale: F = 10.89, p < 0.001; Descriptive Scale: F = 19.25, p < 0.001) were detected, indicating its suitability for assessment of post-injury health related quality of life. Bland-Altman plots confirmed that few differences existed between modes of administration.ConclusionThe EQ-5D-3L™ is an appropriate instrument for collecting health related quality of life data among injured children and can be administered via paper-pencil, online or by telephone.

Abstract 260: Components of Change Processes of Quality of Life among Stable Coronary Patients with or without Percutaneous Coronary Intervention

Background: Percutaneous coronary intervention (PCI) plus intensive pharmacologic and lifestyle intervention (optimal medical therapy, OMT) to OMT alone was compared in reducing the risk of cardiovascular events in a total of 2,287 patients with stable coronary disease in the COURAGE trial, in which health related quality of life data were measured repeatedly over time for a median of 4.6 years. We examined components of changes in angina-related quality of life over time. Methods: Angina-specific health status was assessed with the Seattle Angina Questionnaire (SAQ). Scores range from 0 to 100; higher scores indicate better health status. Linear piece-wise latent growth curve modeling was conducted to reveal the components of process and risk factors of SAQ score changes over time. Results: For each domain the change process can be divided into two components: a process of improvement from baseline to 6 or 12 months during which the scores significantly increase with a steep upward trajectory till reaching the maximum score value; and followed by a process of stabilization during which the scores kept stable or in a downward slope until the end of the follow-up. Patients in both PCI and OMT alone groups experienced significant increase on SAQ scores over time in each domain. PCI had significant impact in the process of improvement: patients with PCI had about 0.603 (SE=0.193, p-value=0.002) and 0.442(SE=0.22, p-value =0.044) points increase per month in scores in the domains of physical limitation and angina frequency, respectively; the benefit of PCI decreased in the process of stabilization until it disappeared so that the scores in both groups were eventually similar (Table 1). The important risk factors of change in SAQ scores were the use of long-acting nitrates at randomization, the Charlson comorbidity index, and several additional factors that differed by domain. Conclusions: Mechanism and processes of change in angina-related quality of life and health status were significantly related to the impact of adding PCI to OMT. Piece-wise growth curve modeling can be used to capture advantages of PCI over OMT and identify patient characteristics associated with subsequent measures of angina.

Quality of Life Assessment in Surgical Oncology Trials

Integrating health-related quality of life (HRQOL) as an endpoint for randomized surgical trials provides valuable insight into the patients' perspective on treatment outcome. Health related quality of life data also play a role in ensuring fully informed consent, determining treatment options and informing treatment decision making. However, few randomized surgical trials have been conducted that meet the minimum requirements for rigorous HRQL assessment and, despite increasing efforts to improve the reporting of randomized trials, many are still not adequately performed. Such methodologic limitations may influence trial findings for HRQL outcomes and undermine the ability of the data collected to inform clinical practice. This review describes key methodological aspects of HRQL assessment that are required in randomized trials to ensure that data are robust. This includes choice of HRQL instrument, the method and timing of assessments and data analysis and presentation. The review also makes recommendations for future research in this area.

Quality of life of people with venous leg ulcers: A comparison of the discriminative and responsive characteristics of two generic and a disease specific instruments

Venous leg ulcers are an important source of morbidity in society. Measuring the impact of leg ulcers on quality of life is important within clinical and economic evaluations. In this study we report a validation study of the leg ulcer disease specific Hyland questionnaire and compare its discriminative and responsive characteristics to general health quality of life measures: the SF-12 and EQ-5D. HRQoL of venous leg ulcer patients from 9 UK regions was measured using SF-12, EQ-5D and Hyland, at baseline and every three months for 1 year. Psychometric analysis was used to confirm the validity of the Hyland questionnaire. Quarterly scores for all instruments were calculated. Effect size and standardised mean difference were used to investigate the responsiveness to ulcer healing and discriminative abilities of the instruments. Three hundred and eighty seven individuals were recruited into the VenUS I study. Baseline health related quality of life data from the study participants suggested a two factor solution for the Hyland. This questionnaire was associated with small and moderate ability to discriminate individuals according to age, mobility, initial ulcer size and ulcer duration. SF-12 and EQ-5D had good evaluative properties; both instruments were responsive to changes in HRQoL after ulcer healing. High levels of bodily pain were reported in the SF-12 questionnaire, whilst only minor ulcer related discomfort was reported in the Hyland. SF-12 and EQ-5D are suitable for exploring dimensions of health related quality of life in people with chronic venous leg ulceration. The responsiveness to healing of the Hyland questionnaire is unclear. We would recommend the use of generic instruments for the measurement of HRQoL in patients with venous leg ulcers.

Assessing intra‐individual changes in health related quality of life data in psychiatric clinical trials

AbstractAssessment of intra‐individual changes in health related quality of life (HRQOL) measures is important to develop individual change standards and to provide help in clinical practice. Methodological issues related to the analysis of HRQOL data depend on the nature of medical illnesses and the target population. However, one issue—the need to assess HRQOL changes across individuals over time—spans most conditions. Modest improvement in HRQOL may be harder to assess in elderly depressed persons who also have high rates of co‐existing medical and neurobiological illnesses. Powerful statistical techniques are necessary to assess these improvements. Focusing on methods related to the issue of measuring change, we describe the potential of a mixed‐modeling approach for the assessment of intra‐individual changes using HRQOL data measured in a large group of elderly patients with recurrent major depression. These patients were treated with combined pharmacotherapy and interpersonal psychotherapy. We used a mixed‐modeling approach and two pre‐post difference score methods. The percentage of intra‐individual statistically significant improvement rates was found to be largest for the mixed‐modeling approach. We conducted simulation studies to compare these three approaches for assessing these changes. The simulated data reflected the observed data. Results from the two simulation studies are in agreement with the observed results and provide positive evidence for an earlier hypothesis (Speer and Greenbaum, 1995) that the mixed‐modeling approach is more sensitive for assessing changes across individuals over time compared to the pre‐post difference score methods. Thus, we recommend the use of the mixed‐modeling approach to measure intra‐individual changes, based on a larger array of supporting evidence than has been available previously. Copyright © 2004 John Wiley &amp; Sons, Ltd.

HEALTH RELATED QUALITY OF LIFE DIFFERENCES BETWEEN BLACK AND WHITE MEN WITH PROSTATE CANCER: DATA FROM THE CANCER OF THE PROSTATE STRATEGIC UROLOGIC RESEARCH ENDEAVOR

Understanding the potential consequences of racial differences in prostate cancer outcomes, from survival rates to quality of life considerations, is important for the clinician and patient. We examined demographic, clinical and health related quality of life data comparing black with white patients just after treatment of prostate cancer and 1 year later. We analyzed data on 1,178 patients who were newly diagnosed with prostate cancer in the Cancer of the Prostate Strategic Urologic Research Endeavor, a national observational database of men recruited from 35 community and academic urology practices throughout the United States. Patient demographics, clinical characteristics and validated health related quality of life questionnaires were reviewed. A total of 958 white and 161 black patients with prostate cancer who completed at least 2 surveys were compared. The black patients were younger, and had lower income and education levels than white patients. Controlling for age, education and income differences, black patients generally had worse clinical characteristics at presentation and lower baseline health related quality of life data scores in most generic and disease specific categories at treatment. The most notable exception was sexual function, which was the only score that was higher in black patients at treatment. With time, health related quality of life improved in both groups but black patients had slower rates of improvement for general health, bodily pain, physical function, role function, disease worry and bowel function. They continued to have higher sexual function. Significant differences exist in clinical presentation, sociodemographic characteristics, and health related quality of life between black and white men with prostate cancer. These health related quality of life differences remain after treatment. Physicians should not assume that outcomes in black men would be similar to other patients.

Quality of Life and End Stage Renal Disease Therapeutic Programs

Because patients with ESRD cannot be cured of their underlying conditions and because the therapeutic programs have an important impact on the patients' life style, the patient's own assessment of health should have a central place in clinical care. Until now, attention has almost exclusively focused on technical and clinical outcomes, and survival. Functional status, well-being and quality of life, satisfaction with care, or in other words "patient's experience", have been only marginally considered. There is a growing recognition that use of mortality data alone is not the most effective way to asses the quality of care provided to these patients. Generic and disease-specific health issues can be investigated with the use of questionnaires, by asking questions that cover physical, psychological and social domains. Health related quality of life data regarding chronic renal failure, dialysis and transplantation are briefly presented and discussed. These data show differences between patient's subjective feelings and physician's opinions about patients, between objective quality of life indexes and subjective quality of life scores. A more comprehensive view of our patients seems possible and useful.

Measuring Health Related Quality of Life in Men with Prostate Cancer

Health related quality of life is one of several end points commonly studied in medical outcomes research. It refers to how well an individual is functioning in life and to his or her own perceptions of well being. Although health related quality of life variables concern subjective phenomena, their measurement is rigorously quantitative and based upon the well defined principles of psychometric research methodology. Health related quality of life data are collected with survey instruments, which may be self-administered or require a trained interviewer. Some are completed at a medical facility, while others are completed independently at home or by telephone. To yield useful information, such instruments must undergo extensive pilot testing and be shown to have sound psychometric properties. This testing determines whether an instrument can produce data that are reliable or reproducible, and valid or meaningful. Health related quality of life instruments typically contain several collections of items, called scales, that apply to particular dimensions of quality of life. These scales contribute to a qualitative profile of the health-related components of the daily life of a subject.General health related quality of life measures include broad issues that concern many types of patients, while disease-targeted measures address issues that are specific to the condition under study. Both are necessary to create a full and rich picture of patient quality of life. The field of health related quality of life research remains in its adolescence. Although several general measures are now well established, many disease targeted domains have been left unexplored. In men treated for prostate cancer, established general and cancer specific health related quality of life instruments may be combined with newly developed measures that assess the prostate related sexual, urinary and bowel domains in terms of degree of dysfunction and level of bother from that dysfunction.With the substantially increased patient role in directing treatment for prostate cancer, the importance of examining health related quality of life outcomes in addition to survival has been underscored. It is the responsibility of the urological community to include health related quality of life when assessing new and established prostate cancer therapies, and when counseling patients.