Health-related Quality Of Life Summary Research Articles

Assessing Health-Related Quality of Life Among Children With Special Health Care Needs in the United States

The objectives of this article were to examine the differences in health-related quality of life (HRQOL) between children with and without special health care needs, and identify the risk factors associated with HRQOL in children with special health care needs (CSHCN). Data from the National Survey of Children's Health 2003 were used (N = 66,416). Results showed that the HRQOL summary scores were lower among CSHCN than children without special health care needs. Regression analyses revealed that having multiple (3 or more) special health care needs was the strongest predictor of lower HRQOL. In addition, younger age, lower socioeconomic status, health care access barriers, and poor maternal health were all factors associated with lower HRQOL. Implications for practice and policy are discussed.

Differences in mothers’ and fathers’ health-related quality of life after pediatric SCT: a longitudinal study

The purpose of this study was to examine longitudinally health-related quality of life (HRQOL) and related factors in mothers and fathers of children who undergo SCT, before, and 1 and 2 years after SCT. A total of 84 parents (49 mothers/35 fathers) of patients diagnosed mainly with leukemia completed a HRQOL measure before SCT, 46 at 1 year (26 mothers/20 fathers) and 50 parents (31 mothers/19 fathers) at 2 years post SCT. Physical and psychosocial HRQOL summary scores are reported. Parents' age and gender, child's diagnosis, radiation history, age, behavior and physical health were examined. Linear mixed models for repeated measures with a covariate structure were used for analysis. Physical HRQOL did not differ between mothers and fathers or over time. Maternal and paternal psychosocial HRQOL scores improved by 2 years post SCT. Child's behavior problems and poor health, and maternal age (younger) predicted poor maternal psychosocial HRQOL 2 years post SCT. Child's behavior problems, diagnosis and treatment severity predicted poor paternal psychosocial HRQOL. These findings identify similar (child's poor behavior) and differential risk factors (parental young age, disease and treatment severity, and child's poor health status) for poor HRQOL for mothers and fathers. These findings can guide comprehensive family-care interventions before, during and after pediatric SCT.

The health-related quality of life of overweight and obese adolescents – a study measuring body mass index and adolescent-reported perceptions

To determine whether the health-related quality of life (HRQOL) of overweight and obese adolescents is significantly lower than that of their healthy weight counterparts, and if so, whether any demographic trends exist and the relative contribution of each HRQOL dimension. Cross-sectional analysis of 2,890 students participating in the Pacific Obesity Prevention in Communities Project, Australia. HRQOL was measured using the Pediatric Quality of Life Inventory (PedsQL) adolescent module. Adolescent height and weight were measured by trained field workers and weight categories assigned according to the International Obesity Task Force BMI cut-off points for adolescents. Multivariate linear regression analyses were undertaken to estimate the mean differences in HRQOL scores between (i) overweight and healthy weight, and (ii) obese and healthy weight adolescents, whilst adjusting for gender, age and socioeconomic status quartile. The sample had a mean age of 14.6 years (range 11-18), 56.2% boys, 20.2% overweight and 6.3% obese. Higher weight status categories were associated with lower HRQOL scores (mean PedsQL scores: healthy weight: 79.1, overweight: 77.7 and obese: 73.7). Relative to the healthy weight group, and after adjustments, overweight and obese adolescents reported 1.44 (p = 0.005) and 5.55 (p < 0.001) lower HRQOL summary scores, respectively. Overweight adolescents reported significantly lower scores in physical and social functioning, whilst obese adolescents reported significantly lower scores in the same dimensions plus emotional functioning. Girls and younger (< 15 years) adolescents reported greater mean negative HRQOL differences associated with excess weight. Overweight and obesity in adolescents are associated with significantly lower HRQOL scores.

Health-related quality of life among women with a history of breast cancer in Europe.

e19615 Background: Due to the improvement in breast cancer (BC) detection and treatment, the prevalence of women with a history of BC is increasing. Yet, few international community-based studies have been conducted to examine the health-related quality of life (HRQoL) of women following diagnosis and treatment. Methods: Using data from the 2010 EU (UK, Germany, France, Italy, and Spain) National Health and Wellness Survey (NHWS), women with a history of breast cancer (BC+ group) were compared with women without a history of breast cancer (BC- group) on HRQoL (using the physical (PCS) and mental component summary (MCS) scores and health state utilities (SF6D) from the SF-12v2) controlling for demographics (age, education, etc), comorbidity burden (Charlson comorbidity index), and health characteristics (smoking, etc). Further, among just the BC+ group, predictors of HRQoL were examined. Results: A total of 579 women (2.0%) reported a history of BC in the EU. The mean age for BC+ women was 60.6 (standard deviation (SD)=10.1) and women had been diagnosed a mean of 9.6 years (SD=7.2). Most BC+ women were currently cancer free (76.9%) though 33.7% were still receiving drugs (hormonal therapies or others). Despite being mostly cancer free, BC+ women reported significantly lower levels of PCS (Adjusted means = 45.8 vs. 48.3, p<.05) and health state utilities (Adjusted means = 0.69 vs. 0.71, p<.05) relative to BC- women, even after adjusting for demographics, comorbidity burden, and health characteristics. No significant differences were observed on MCS scores. Subsequent analyses of just the BC+ group revealed that the primary predictors of health state utilities included age (b=0.002), employment (b=0.43), exercise behavior (b=0.04), alcohol use (b=0.04), comorbidity burden (b=-0.01), years diagnosed (b=0.002), and current cancer stage (b’s=-0.01 to -0.08) (all p’s<.05). Conclusions: The diminished HRQoL in BC+ women in the EU may be related to long-term persistent complications from BC treatments. From a public health perspective, prevention initiatives, special support and further attention on improving HRQoL among these women should be given, particularly as the prevalence rates of those with a history of cancer continue to rise.

Impact of hospitalization on health-related quality of life in atrial fibrillation patients in Canada and the United States: Results from an observational registry

Hospitalization is recognized as an important end point in atrial fibrillation (AF). The association between hospitalization and reduced health-related quality of life (HRQOL) has not been previously studied. The FRACTAL study was a prospective observational registry of patients enrolled in the United States and Canada with new-onset AF diagnosed by electrocardiogram. HRQOL was assessed with the SF-12 and the AF Symptom Checklist at baseline, 3, 6, 12, 24 and 30 months. Mixed linear regression models were fitted to estimate the impact of hospitalization on HRQOL summary scores, adjusting for demographic and baseline comorbid conditions known to influence HRQOL in this population. Of 933 subjects who completed questionnaires and were not hospitalized during the baseline study visit, 303 (32%) were hospitalized a total of 490 times during a mean of 2.0 years of follow-up. Most admissions (64%) were for cardiovascular causes. The adjusted effect of any hospital admission (vs none) on symptom frequency and severity scores over time was +1.3 and +1.1 points, respectively (P < .01 for both). The adjusted effect of any admission on the SF-12 physical score was -2.7 points (P < .0001) and on health state utility, -0.03 (P < .0001). In contrast, hospitalization had little effect on longitudinal Short Form 12 mental scores (-0.7 points, P = .15). Within 2 years after AF diagnosis, hospitalizations were associated with increased AF symptomatology and decrements in generic physical HRQOL and utilities. Based on these results, interventions that reduce admissions in AF patients may also improve or preserve HRQOL.

Converting the SF-12 into the EQ-5D

For cost-utility analysis, analysts need a measure that summarizes health-status utilities in a single index of health-related quality of life (HR-QOL). It is common to find in clinical studies that only an HR-QOL profile measure such as the SF-36 is included, but not the summary HR-QOL index. Therefore, the economist's usual practice is to reprocess the profile data into a single index format. Several 'after-market' tools are available to convert the SF-36 or SF-12 into a single form with or without utility-weighting metric property. However, there has been no consensus with regard to a regression method that should be recommended for such a mapping task. To report on the performance of different regression methods that have previously been applied to the conversion of SF-12 data in the analysis of a single common dataset. The mapping between the SF-12 and EQ-5D is the focus. The data were adopted from the Medical Expenditure Panel Survey 2003 where 19 678 adults completed both EQ-5D and SF-12 questionnaires. Four econometric techniques, namely ordinary least squares (OLS), censored least absolute deviation, multinomial logit model and two-part model regressions were investigated together with two main types of model specifications: item-based and summary score-based. The performance of each examined model was judged by various criteria, including its estimated mean, the size of mean absolute error and the number of errors. Among four compared econometric techniques, OLS regression was the most accurate model in estimating the group mean. Models with item-based model specification performed better than those with summary score-based regardless of the chosen econometric technique. Nevertheless, the accuracy of OLS deteriorates in older and less healthy subgroups. The results also suggested that the two-part model, which addresses the heterogeneity issue, performs better in these vulnerable subgroups. None of the mapping methods included in the current study are suitable for estimating at the individual level. The methodology exemplified here has wider applicability and might just as readily be applied to other members of the SF family or indeed to other profile measures of HR-QOL. However, it is recommended that a preference-based, single index measure of HR-QOL should be included in the clinical studies for the purpose of economic evaluation.

Association of fatigue and psychological distress with quality of life in patients with a previous venous thromboembolic event

Health-related quality of life (QoL) has been associated with several social and medical conditions in patients with deep vein thrombosis (DVT) and pulmonary embolism (PE). To the best of our knowledge, there is no study investigating the relationship of QoL with psychological variables in this patient population. We assumed as a hypothesis an association between heightened levels of fatigue and psychological distress, as well as decreased QoL in patients with an objectively diagnosed venous thromboembolic event. Study participants were 205 consecutively enrolled out-patients (47.4 years, 54.6% men) with DVT and/or PE. Approximately 10 days before blood collection for thrombophilia work-up, QoL, fatigue, and psychological distress were assessed using the Short Form Health Survey (SF-12), the Multidimensional Fatigue Symptom Inventory Short Form (MFSI-SF) as well as the Hospitality Anxiety and Depression scale (HADS). After controlling for demographic and medical factors, fatigue (p < 0.01) but not psychological distress (p>0.05) was negatively associated with physical QoL, explaining 11.0% of the variance. Fatigue (p < 0.001) and psychological distress (p < 0.001) were significant predictors of mental QoL, explaining an additional 36.2% and 3.6% of the variance. Further analyses revealed that all subscales of the HADS (e.g. anxiety and depression) and of the MFSI-SF (e.g. general fatigue, physical fatigue, emotional fatigue, mental fatigue and vigor) were significant predictors of mental QoL. MFSI-SF subscales also predicted physical QoL. The findings suggest that fatigue and psychological distress substantially predict QoL in patients with a previous venous thromboembolic event above and beyond demographic factors.

Health‐related Quality of Life in Patients on Peritoneal Dialysis in Serbia: Comparison with Hemodialysis

Patients' health-related quality of life (HRQoL) is an important indicator of the effectiveness of the medical care they receive. Patients who reach end-stage renal disease are older and have a considerable extent of comorbidity. The objectives of this study were (i) to evaluate HRQoL in patients at the initiation of continuous ambulatory peritoneal dialysis (CAPD) treatment (incident cohort) and in patients on long-term CAPD therapy (prevalent cohort), and (ii) to compare influence of comorbidity on HRQoL in CAPD and hemodialysis (HD) patients. In a cross-sectional study we enrolled 99 CAPD and 192 HD patients. HRQoL was assessed with the 36-item Short Form Health Survey Questionnaire (SF-36). HRQoL summary scales in both incident and prevalent groups of CAPD patients were similar for physical component summary score (PCS) and for mental component summary score (MCS). Generally, higher values were found in mental health domains in comparison to PCS. In the incident group of patients, 1 year of peritoneal dialysis treatment was associated with a slight improvement in both PCS and MCS, but statistical significance (P < 0.05) was found in the role-physical limitation (RP), bodily pain (BP), and vitality (VT) scales only. CAPD patients with the highest disease severity (Index of Disease Severity [IDS]-3) and physical impairment (Index of Physical Impairment [IPI]-2) scored significantly higher parameters of HRQoL than HD patients. Comorbidity had negative influence on HRQoL, but statistically significant correlation has been found in HD patients only. In conclusion, comorbid conditions had negative correlation with parameters of HRQoL in both CAPD and HD patients. One year after starting CAPD, patients reported better scores in some domains, especially in RP, BP, and VT scales. Assessment of HRQoL and comorbidity might be useful in clinical practice in the follow-up of patients treated with both CAPD and HD.

Influence of Co-Morbidity on Health-Related Quality of Life in Patients Treated with Hemodialysis

Studies on the outcome of hemodialysis (HD) patients over time have mainly focused on morbidity and mortality, but currently, the importance of measuring the patient's health-related quality of life (HRQoL) is being increasingly recognized. On the other hand, comorbidity is the single most important determinant of outcome in patients on HD. The aims of this study were to evaluate HRQoL in patients at the initiation of HD therapy (incident cohort), and in patients on long-term HD treatment (prevalent cohort), and to establish the relationship between the presence of comorbidity and patient's HRQoL. The study enrolled 229 patients on HD, divided into two groups: prevalent cohort comprised 192 patients on chronic HD more than 3 months, and incident cohort with 37 patients who started their dialysis during the study. Comorbidity was assessed using the Index of Coexistent Diseases (ICED), including two sub-indexes: Index of Disease Severity (IDS), a medical record review of 16 medical conditions, and Index of Physical Impairment (IPI), an observer-based assessment of 11 physical functions. ICED scores range from 0 to 3, with higher levels reflecting more severe comorbidity. Patient's self-assessment of HRQoL was measured by the 36-item Short Form Health Survey Questionnaire (SF-36), encompassing 8 summary scales and 2 summary dimensions. Based on the ICED index level, in both groups of patients (prevalent and incident group), a high presence of associated diseases was observed, i.e. 56.8 % and 67.6 % respectively. Indicators of comorbidities have negative and statistically significant correlation, so that any increase of IDS and IPI indexes produces significant decrease of HRQoL parameters. HRQoL summary scales in both groups of patients were similar, but generally with lower values in incident subjects and with statistical significance only in social functioning (SF) scale (40.5 +/- 24.9 vs 51.0 +/- 27.2). In the incident group of patients, one year of HD treatment was associated with a slight improvement in all HRQoL parameters, but statistical significance (p < 0.05) was observed only in the role-physical limitation (RP) scale and SF scale. In the patients on HD treatment, comorbid conditions have negative and statistically significant correlation with parameters of HRQoL, and could explain poor HRQoL to a remarkable extent. One year after starting HD, patients reported better scores in some domains, especially in the RP and SF scale. From a clinical perspective, parameters of HRQoL and comorbidities should be considered in the follow up of patients treated with HD.

Responsiveness of generic health-related quality of life measures in stroke

To compare five preference-based generic measures of health-related quality of life (HRQOL) in terms of change scores, correlations among change scores, responsiveness, and quality adjusted life-years (QALYs) gained. Observational longitudinal cohort study where clinical measures and self-assessed HRQOL measures were administered to stroke patients at baseline and at 6 months. Patients were categorized as 'stable', 'some improvement' and 'large improvement' using the Barthel Index, Modified Rankin Scale (MRS), and Center for Epidemiologic Studies Depression Scale (CES-D). For each group, paired t-tests and variants of effect size were used to compare the responsiveness of preference-based HRQOL summary scores, including the EQ-5D VAS and index-based score, SF-6D, and Health Utilities Index (HUI) Mark 2 (HUI2) and Mark 3 (HUI3) overall utility scores. Ninety-eight of 124 (79%) patients completed the 6-month follow-up. Change scores of the EQ-Index, HUI2, and HUI3 were strongly correlated with changes in the Barthel Index and MRS, while the EQ-5D VAS had higher correlation with CES-D change scores than the other measures. The SF-6D, HUI3, and EQ-Index were generally more responsive than the HUI2 and EQ-5D Visual analogue scale (EQ-VAS). QALY estimates based on the EQ-5D index and HUI3 were twice as large as estimates based on the SF-6D and HUI2. The results of this study may assist in informing the selection of a preference-based generic HRQOL measure, although choice will also depend on study goals and context. We would caution against the generalization of the study results on responsiveness to conditions when more subtle change is expected.

Cross-sectional survey of long-term quality of life after radical perineal prostatectomy

To evaluate the late health-related quality of life (HRQOL) after radical perineal prostatectomy (RPP) and identify the predictors of outcome. We performed a cross-sectional study of 266 consecutive patients who underwent RPP for clinically localized prostate cancer between July 1998 and December 2000. Of the 236 patients successfully contacted, 187 (79.2%) returned a validated patient self-assessment questionnaire, the Expanded Prostate Cancer Index Composite, a mean of 42.1 months (range 29 to 64) months after surgery. The median HRQOL scores were calculated in four disease-specific domains: urinary, bowel, sexual, and hormonal. Preoperative baseline information from a separate group of 144 consecutive RPP candidates from January 2002 to May 2003 was used for comparison. Univariate and multivariate logistic regression analyses were used to identify predictors of more favorable long-term HRQOL outcomes. No statistically significant differences were found in any of the domain-specific summary scores between the study and reference groups, except in the sexual domain (median score 19.2 versus 56.4; P = 0.001). The number of medical comorbidities was a statistically significant predictor of HRQOL summary scores in all domains (P <0.05). In addition, the urinary summary score was statistically significantly associated with income (P = 0.03), sexual summary with the use of erectile aids (P = 0.003), bowel summary with secondary radiotherapy (P = 0.001) and income (P = 0.002), and hormonal summary with androgen ablation (P = 0.004). The results of this study have shown that the long-term HRQOL of RPP patients in the urinary, bowel, and hormonal domains is favorable. HRQOL outcomes depend on a spectrum of factors, including the presence of comorbid disease, socioeconomic status, and secondary cancer treatments. Future studies should seek to address the efficacy of preserving the sexual domain HRQOL in patients undergoing bilateral nerve-sparing RPP.

Health-related quality of life outcomes after kidney transplantation

With the improvements in short and long term graft and patient survival after renal transplantation over the last two decades Health-Related Quality of Life (HRQL) is becoming an important additional outcome parameter. Global and disease specific instruments are available to evaluate objective and subjective QOL. Among the most popular global tools is the SF-36, examples of disease specific instruments are the Kidney Transplant Questionnaire (KTQ), the Kidney Disease Questionnaire (KDQ) and the Kidney Disease-Quality of Life (KDQOL). It is generally accepted that HRQL improves dramatically after successful renal transplantation compared to patients maintained on dialysis treatment but listed for a transplant. It is less clear however which immunosuppressive regimen confers the best QOL. Only few studies compared the different regimens in terms of QOL outcomes. Although limited in number, these studies seem to favour non-cyclosporine based protocols. The main differences that could be observed between patients on cyclosporine versus tacrolimus or sirolimus therapy concern the domains of appearance and fatigue. This may be explained by two common adverse effects occurring under cyclosporine therapy, gingival hyperplasia and hair growth. Another more frequently occurring side effect under calcineurin inhibitor therapy is tremor, which may favour CNI free protocols. This hypothesis, however, has not been formally evaluated in a randomised trial using HRQL measurements.In summary HRQL is becoming more of an issue after renal transplantation. Whether a specific immunosuppressive protocol is superior to others in terms of HRQL remains to be determined.

Social networks and quality of life among female long-term colorectal cancer survivors.

The population of long-term colorectal cancer survivors in the United States continues to increase, but little is known about how they fare-physically, mentally, or socially-in the years after diagnosis. The current study examines female long-term colorectal cancer survivors' health-related quality of life (HRQoL) in relation to social networks. A population-based sample of female colorectal cancer survivors (n = 726) residing in Wisconsin was recontacted approximately 9 years after the initial diagnosis. Of 443 women who were alive in 1999, 307 women completed a follow-up questionnaire. Analysis was conducted on 259 participants who completed the Medical Outcomes Study Short Form 36 Health Status Survey and a modified version of Berkman and Syme's Social Network Index. Using multivariate analyses, HRQoL summary scores were tested for associations with individual and composite measures of social networks, including marital/partner status; number of children, relatives, and friends; and the frequency of religious and community participation. After adjusting for age, extent of disease at diagnosis, number of comorbidities, body mass, and education, HRQoL was similar to norms published for the general population. Individual social network measures (including the number of relatives and friends) and composite network measures (including network size, the number of ties seen at least once per month, and overall social connectedness) were associated positively with mental health. Social networks may have an important relation with HRQoL-particularly mental health-among female long-term colorectal cancer survivors. The results of this study should be of interest to those seeking to understand or improve HRQoL among this growing population.

MHC5 The EuroQol in Parkinson's Disease Research: Rated Current Health vs. Population-Derived Health State Preferences

Policy analysts summarize health-related quality of life (HRQL) with a single value representing the “worth of life” arising from the many dimensions of HRQL. OBJECTIVES: To (1) examine construct validity of two summary HRQL measures, a visual analogue scale (VAS) and EuroQol preference weights (PW), in Parkinson's disease (PD) patients and (2) predict PW and VAS scores from a HRQL profile measure. METHODS: A cross-sectional survey of 193 neurology questionnaires contained the Medical Outcomes Study 36-item short form (SF-36), PD stage and symptoms, VAS, EuroQol, and health satisfaction. A priori hypotheses for testing construct validity predicted varying strengths of relationships between the summary HRQL scores and the SF-36, clinical, and health satisfaction scores. RESULTS: The correlation between VAS and PW was moderate (Spearman correlation 0.415). The PW had more ceiling scores than the VAS (19% vs. 2%). The ranked order of correlation between the individual SF36 scale scores, the clinical scores, and the VAS was as hypothesized, but that for the PW was not. Specifically, the General Health scale ranked 1 for the VAS but 7 for the PW; Health Satisfaction ranked 4 for the VAS but 13 for the PW. The VAS distinguished mild from moderate stage subjects while the PW did not. Models predicting VAS and PW scores from SF-36 scores had adjusted model R-squares of 0.44 (VAS) and 0.52 (PW). CONCLUSION: The VAS, but not the PW, distinguished subjects with different disease severity. The two measures were only moderately correlated and had very different relationships with the domains of HRQL, particularly general health perceptions and health satisfaction.