Important Determinant Of Health-related Quality Research Articles

Experiences of Living With the Nonmotor Symptoms of Parkinson's Disease: A Photovoice Study.

Nonmotor symptoms (NMSs) are frequently experienced by people with Parkinson's disease (PD) and are often perceived as their most bothersome symptoms. However, these remain poorly understood with suboptimal clinical management. These unmet needs are an important determinant of health-related quality of life (QoL) in PD. The aim of this study was to gain insights into the experience of living with the NMS of PD in real-time using participatory action methodology. Using the photovoice method, 14 people with PD took photographs to document their experiences of living with the NMS of PD. They composed corresponding written narratives to capture the impact of NMS on their daily activities and QoL. In total, 152 photographs and corresponding narratives were analysed using thematic analysis with an inductive approach. Four interrelated themes were identified. Emotional well-being and sense of self encompassed a process of adjustment to living with PD. Engaging in valued activities, adopting a positive mindsetand utilising coping strategies were thought to enhance confidence and self-esteem. Social support and societal awareness highlighted the importance of supportive relationships and socialising to aid participation and avoid isolation. Barriers to social engagement included the unpredictability of NMS and nonvisible NMS being neglected or misunderstood. Findings demonstrated the far-reaching impact of nonmotor aspects of PD on emotional, occupationaland social dimensions. These needs could be addressed through person-centred and comprehensive approaches to care. This study utilised a participatory research approach allowing participants to choose the subjects that mattered to them and how to present their results. Additionally, a group workshop was held with people with PD, their family membersand healthcare professionals to guide theme development.

Psychometric performance of the CFQ-R-8D compared to the EQ-5D-3L and SF-6D in people with cystic fibrosis.

This study aimed to compare the psychometric performance of the Cystic Fibrosis Questionnaire-Revised-8 Dimensions (CFQ-R-8D), a new, condition-specific, preference-based measure, with that of generic preference-based measures EQ-5D-3L and Short Form 6 dimensions (SF-6D). Data from three trials of participants with CF aged ≥ 14 years who completed the CFQ-R and EQ-5D-3L or SF-6D were used. Analyses were undertaken to evaluate convergent validity based on correlations with CFQ-R domain scores. Known-group validity was assessed based on percent predicted forced expiratory volume in one second and pulmonary exacerbations. Responsiveness was based on correlation of change and sensitivity to change based on change in symptom severity. Effect sizes and standardized response means were estimated. CFQ-R-8D utilities and dimensions were strongly correlated with most of the overlapping CFQ-R domain scores (ρ > 0.5); EQ-5D-3L and SF-6D utilities and dimensions had moderate (ρ > 0.3) to strong correlations in dimensions capturing similar concepts. All measures showed evidence of known-group validity (P < 0.05). Change correlations were strong for CFQ-R-8D utilities and dimensions and CFQ-R, but they were moderate for SF-6D and mostly weak ((ρ > 0.1) for EQ-5D-3L. The SF-6D had the largest mean change over time and effect sizes, followed by CFQ-R-8D and then EQ-5D-3L. Neither CFQ-R-8D or SF-6D utility scores had ceiling effects (< 9% responses in full health) compared with those of EQ-5D-3L (61-62%). In participants classified as being in full health by EQ-5D-3L, CFQ-R-8D captured CF-specific health problems, particularly cough, abdominal pain, and breathing difficulty. The CFQ-R-8D reflected known-group differences and changes over time with stronger evidence of good psychometric performance than EQ-5D-3L and similar evidence as SF-6D. Additionally, the CFQ-R-8D captured more condition-specific symptoms than EQ-5D-3L or SF-6D, which are important determinants of health-related quality of life for people with CF.

Physical function and sex differences in radiographic axial spondyloarthritis: a cross-sectional analysis on Bath Ankylosing Spondylitis Functional Index

BackgroundPhysical function is an important determinant of health-related quality of life in radiographic axial spondyloarthritis patients (r-axSpA). To improve the basis of effective healthcare efforts, we aimed to investigate which demographic and disease-related factors that influence Bath Ankylosing Spondylitis Functional Index (BASFI) in r-axSpA patients overall and stratified by sex. Furthermore, we sought to explore differences between sexes regarding separate BASFI questions and also to explore which factors that may contribute to these differences.MethodsThis observational cross-sectional study included patients fulfilling the modified New York criteria for Ankylosing Spondylitis. Patients were assessed with 66/68 joint count and Bath Ankylosing Spondylitis Metrology Index (BASMI) measurements. Lateral X-rays were performed for Modified Stoke Ankylosing Spondylitis Spinal Score (mSASSS). Bath Ankylosing Spondylitis Disease Activity Index (BASDAI), Ankylosing Spondylitis Disease Activity Score (ASDAS)-C-Reactive Protein (CRP), and BASFI were registered. Multivariable linear regression analyses were used to investigate which factors that associate with BASFI.ResultsA total of 353 r-axSpA patients were included, mean age 52.2 ± 12.7 years, 62.3% males. No significant sex difference was seen in BASFI scores (2.7 ± 2.0 in males vs 2.9 ± 2.1 in females). Age, body mass index, ASDAS-CRP, BASMI or mSASSS, fatigue, and tenderness were found to associate independently with BASFI in different models (R2 0.53–0.63). Investigation of separate BASFI questions revealed that the ability to look over shoulder was worse in males than females (mean 4.43 ± 3.37 vs 3.74 ± 3.06, p = 0.05) and most strongly correlated with mSASSS and BASMI among separate BASFI questions (r = 0.53, p < 0.001; r = 0.62, p < 0.001). The ability to climb stairs was worse in females than males (mean 2.49 ± 2.77 vs 1.54 ± 2.32, p < 0.001).ConclusionsNo difference between male and female r-axSpA patients was seen in BASFI despite significant sex differences in BASMI, mSASSS, and CRP levels. Our results underline the impact of fatigue and tenderness on BASFI. The ability to climb stairs without a handrail was scored worse among females compared to males. Furthermore, the ability to look over the shoulder was worse in males than females and closely related to spinal mobility and structural spinal changes.

P548 External validation and consistency in time of patient segmentation based on disease acceptance and perceived control in Inflammatory Bowel Disease

Abstract Background The patient segmentation model based on disease acceptance and perceived control may guide personalized inflammatory bowel disease (IBD) care. A first single-centre evaluation of the model showed its validity and found that disease acceptance and perceived control are important determinants of health-related quality (HRQoL) in IBD patients. We aimed to investigate the external validity of the segmentation model and its performance in course of time. Methods This is a longitudinal study of adult IBD patients guided at three secondary care centres with questionnaires on HRQoL (10-item Short IBDQ, range 10–70) and disease acceptance and control (3-items each, 7-point Likert scale). Two cohorts were created: 1) external validation cohort excluding participants of initial validation study and 2) follow-up cohort of patients with questionnaires after one year. Segments were formed based on mean acceptance and control (cut-off high score&amp;gt;5). Results The external validation cohort included 921 patients that were divided in four segments (Figure 1). The acceptance and control scale were unidimensional (85% and 83% of variability explained by the first factor) and internally consistent (Crohnbach’s alpha 0.92 and 0.90). The segments differed significantly in gender, disease duration, IBD medication and clinical disease activity (p&amp;lt;0.05). In multiple regression analysis, high acceptance and high control were significantly associated with a higher HRQoL compared with low acceptance and low control (Beta (95%CI) segment I=11.8 (10.5–13.2), segment II=9.4 (7.8–11.0) and segment III=3.8 (1.6–6.1), p&amp;lt;0.01). The follow-up cohort included 783 patients: 58% remained in the same segment while 42% differed in segment over time (Figure 2). HRQoL differed significantly between patients with positive, negative or no change in segment (p&amp;lt;0.001)(Figure 3). The change in HRQoL over time correlated positively with changes in segment (Spearman rho 0.38, p&amp;lt;0.001) (Figure 4). Conclusion This study demonstrated the patient segmentation model based on disease acceptance and perceived control is externally valid and shows consistency over time. The independent association between the different segments and HRQoL was confirmed. In many patients disease acceptance and perceived control remained low after one year. Future research and interventions should aim at improving disease acceptance and perceived control of IBD patients.

Higher Serum Vitamin D Concentrations Are Longitudinally Associated with Better Global Quality of Life and Less Fatigue in Colorectal Cancer Survivors up to 2 Years after Treatment.

Vitamin D status may be an important determinant of health-related quality of life of colorectal cancer survivors. The current study investigated longitudinal associations between serum 25-hydroxyvitamin D3 (25OHD3) concentrations and quality of life in stage I-III colorectal cancer survivors up to 2 years after treatment. Patients with colorectal cancer (n = 261) were included upon diagnosis. Home visits (including blood sampling) were performed at diagnosis and at 6 weeks, 6 months, 1 year, and 2 years after treatment. Serum 25OHD3 concentrations were measured using LC/MS-MS and adjusted for season. Validated questionnaires were used to assess global quality of life and cognitive functioning (EORTC-QLQ-C30), fatigue (EORTC-QLQ-C30 and Checklist Individual Strength, CIS), and depression and anxiety (Hospital Anxiety and Depression Scale). Statistical analyses were performed using linear mixed models and adjusted for sex, age, time since diagnosis, therapy, comorbidities, physical activity, and body mass index. At diagnosis, 45% of patients were vitamin D deficient (<50 nmol/L). After treatment, 25OHD3 concentrations increased on average with 3.1 nmol/L every 6 months. In confounder-adjusted models, 20 nmol/L increments in 25OHD3 were longitudinally associated with increased global quality of life [β 2.9; 95% confidence interval (CI), 1.5-4.3] and reduced fatigue (EORTC-QLQ-C30 subscale: β -3.5; 95% CI, -5.3 to -1.8 and CIS: β -2.8; 95% CI, -4.7 to -0.9). Observed associations were present both within and between individuals over time. Higher concentrations of 25OHD3 were longitudinally associated with better global quality of life and less fatigue in colorectal cancer survivors. This study suggests that higher 25OHD3 concentrations may be beneficial for colorectal cancer survivors. Future intervention studies are needed to corroborate these findings.

Long-term health-related quality of life, survival and costs by different levels of functional outcome six months after stroke.

Information about the impact of functional outcome after stroke is currently missing on health-related quality of life, survival and costs. This information would be valuable for health economic evaluations and for allocation of resources in stroke health care. Data on 297 Swedish patients included in the Third International Stroke Trial were analysed including functional outcome at six months (measured by Oxford Handicap Scale), health-related quality of life up to 18 months (EQ-5D-3L) and survival up to 36 months. We used record linkage to collect data on costs up to 36 months, using national patient registers. Patients with a better functional outcome level at six months had a significantly better health-related quality of life at 18 months (p < 0.05), better long-term survival (p < 0.05) and lower costs (p < 0.001), for all time points up to 36 months. The difference in costs was mainly due to differences in days spent in hospital (p < 0.005). This study showed an association between functional outcome at six months and health-related quality of life up to 18 months, and costs up to 36 months. Functional outcome six months after stroke is an important determinant of health-related quality of life, survival and costs over 36 months. Effective interventions aimed at reducing short-term disability levels are therefore also expected to reduce the overall burden of stroke.

Impact of current cough on health-related quality of life in patients with COPD.

BackgroundCough and sputum production are frequent in chronic obstructive pulmonary disease (COPD). The objective of this study was to examine the relationship between cough and sputum production and health-related quality of life in COPD.MethodsA cross-sectional study was conducted in the French Initiatives COPD cohort and assessed cough and sputum production within the past 7 days using the cough and sputum assessment questionnaire (CASA-Q), health-related quality of life, spirometry, smoking status, dyspnea, exacerbations, anxiety and depression, and comorbidities.ResultsOne hundred and seventy-eight stable COPD patients were included (age, 62 [56–69] years, 128 male, forced expiratory volume in 1 second [FEV1]: 57 [37–72] % predicted) (median [Q1–Q3]). In univariate analyses, health-related quality of life (Saint George’s respiratory questionnaire total score) was associated with each CASA-Q domain and with chronic bronchitis, exacerbations, dyspnea, FEV1, depression, and anxiety. All four domains introduced separately were independently associated with health-related quality of life. When introduced together in multivariate analyses, only the cough impact domain remained independently associated with health-related quality of life (R2=0.60). With chronic bronchitis (standard definition) instead of the CASA-Q, the R2 was lower (R2=0.54).ConclusionThis study provides evidence that current cough in the previous 7 days is an important determinant of health-related quality of life impairment in stable COPD patients.

PCN196 - Patient and Disease Characteristics are Important Determinants of Health-Related Quality of Life of Patients with Metastatic Renal Cell Carcinoma Results from a Population-Based Registry

PCN196 - Patient and Disease Characteristics are Important Determinants of Health-Related Quality of Life of Patients with Metastatic Renal Cell Carcinoma Results from a Population-Based Registry

Parents of children with cancer: Which factors explain differences in health‐related quality of life

Research with parents of children with cancer has identified factors related to their adjustment and coping, but it is not fully understood why some parents do well and others do not. Guided by a stress process model, we examined the interrelationships among a comprehensive set of factors to identify the most important determinants of health-related quality of life (HRQoL) in parents of children in active treatment for cancer. A cross-sectional survey of 411 parents (80% response rate) of children receiving cancer treatment in Canada was conducted between November 2004 and February 2007. The following constructs were measured: background and context factors, child characteristics, family-centered service delivery, caregiver strain, intrapsychic factors, coping/supportive factors and parental HRQoL. The model was evaluated using structural equation modeling. Analysis was stratified by time since diagnosis (i.e., <12 months and ≥12 months). For those within 12 months of their child's diagnosis, family-centred service provision, caregiver strain, and self-perception accounted for 58% of the variation in psychosocial health, whereas caregiver strain and social support explained 50% of the variation in physical health. For parents in the >12 month group, caregiving strain was the only factor with a direct relationship with parental psychosocial and physical health, accounting for 66% and 55% of the variance in these constructs, respectively. Our findings reinforce the need for health professionals to be particularly attuned to family caregivers in the early stages of treatment and identify potential areas for interventions to promote parental health.

Impact of Baseline and Induced Dyspnea on the Quality of Life of Patients With COPD

Dyspnea is the main symptom of chronic obstructive pulmonary disease (COPD) and as such is an important determinant of health-related quality of life. It is, however, weakly correlated to severity of obstruction and there is little information available on how it exercises its effect on health-related quality of life. The aims of this study were to identify the determinants of baseline dyspnea and to ascertain how that factor influences the health-related quality of life of patients with COPD. A total of 101 patients with COPD were studied. Tests included full lung function assessment, the bronchial provocation test (n=70), and the 6-minute walk test. The following variables were measured: Baseline dyspnea, bronchoconstriction-induced dyspnea, exertional dyspnea, health-related quality of life, and levels of anxiety and depression. Determinants of baseline dyspnea were anxiety (explained variance, 17%), maximal inspiratory pressure (4%), and PaO2 (4%). In patients with mild to moderate COPD (forced expiratory volume in 1 second, >50% of predicted), the main determinant of health-related quality of life was anxiety (explained variance, 43%). Other determinants were the number of meters walked in the 6-minute-walk test, age, and Baseline dyspnea (variance explained by both factors, 26%). Baseline dyspnea and bronchoconstriction-induced dyspnea were both identified as independent determinants of health-related quality of life (on the activity and impact subscales of the St George's Respiratory Questionnaire, respectively). The main determinant of health-related quality of life in patients with severe COPD (forced expiratory volume in 1 second, < or =50% of predicted) was baseline dyspnea. Finally, the main determinants of anxiety were exertional dyspnea (variance, 42%) and baseline dyspnea (6%). Anxiety is the main determinant of health-related quality of life in patients with COPD, and it is triggered mainly by baseline dyspnea and exertional dyspnea.

Long-Term Physical Activity Patterns and Health-Related Quality of Life in U.S. Women

Despite studies showing that physically active individuals report higher quality-of-life scores, few data exist on the impact of changing physical activity levels on subsequent changes in quality of life. Subjects were 63,152 women in the Nurses' Health Study aged 40 to 67 years in 1986. Women reported their physical activity on questionnaires in 1986, 1988, 1992, 1994, and 1996, and were grouped according to quartile of change in activity from 1986 to 1996. Women also reported seven health-related quality-of-life dimensions in 1996 and 2000 using the Medical Outcomes Study Short-Form 36 Health Status Survey. The main outcome measures were scores for each of these seven dimensions in 1996, as well as changes in each of these dimensions from 1996 to 2000. Data were analyzed in 2006. In age and baseline activity adjusted analyses, compared to women whose physical activity was relatively stable from 1986 to 1996, women who saw any increase in physical activity levels had higher quality-of-life scores in 1996. Among women with a clear increase in physical activity, the increase in quality-of-life scores ranged from 2.23 (95% confidence intervals [CI]=1.94-2.52) for mental health to 8.23 (95% CI=7.49-8.97) for role limitations due to physical problems. Increasing physical activity also was associated with greater increases in quality-of-life scores from 1996 to 2000 compared to women whose physical activity level was stable. The strongest association was for role limitations due to physical problems, where women with a clear increase in physical activity had a significant improvement (1.81, 95% CI=1.09-2.53) in the outcome. Long-term physical activity patterns are an important determinant of health-related quality of life.

Sleep disorders and illness intrusiveness in patients on chronic dialysis.

The prevalence of sleep problems (insomnia, restless legs syndrome, periodic limb movements in sleep and sleep apnoea) has been shown to be high in patients with end-stage renal disease (ESRD) and might contribute to impaired quality of life in this population. In a cross-sectional study using self-administered questionnaires, we examined the prevalence of sleep disorders and assessed their effect on different aspects of health-related quality of life in a sample of Hungarian patients on maintenance dialysis. Our data confirm that sleep problems are frequent in patients with ESRD; 65% of the patients reported symptoms of at least one specific sleep disorder; insomnia was the most common sleep complaint with 49%, the prevalence of sleep apnoea was 32% and the prevalence of restless legs syndrome was 15%. Co-morbidity, assessed by the End-Stage Renal Disease Severity Index, was shown to be an independent predictor of sleep disorders. Patients with sleep disorders reported higher illness intrusiveness and worse self-perceived health than those without sleep problems. The presence of sleep disorders was an independent predictor of illness intrusiveness, an important determinant of health-related quality of life. Sleep disorders are important determinants of illness intrusiveness and health-related quality of life in patients with ESRD. Sleep problems may be treated successfully; therefore, more attention should be paid to assessing these problems in this patient population.

Comorbid illness is an important determinant of health-related quality of life in patients with chronic hepatitis C

OBJECTIVES: Chronic hepatitis C (CHC) patients selected for entry into treatment trials have been reported to have impaired health-related quality of life (HRQOL). However, these trials have an inherent selection bias, and HRQOL in CHC patients may have been underestimated because of the exclusion of patients with comorbid illness. The aim of this study was to assess HRQOL in an unselected group of CHC patients and to identify factors associated with impairment in HRQOL. METHODS: A total of 220 consecutive eligible CHC patients were enrolled from a hepatology clinic. HRQOL was assessed by the short form 36 (SF-36) and comorbid illnesses were assessed by an interview. RESULTS: CHC patients had significantly lower SF-36 scores in all subscales and in the summary scales when compared to those of the healthy general population in the United States ( p < 0.001). Compared to CHC patients entering treatment trials, our patients had lower SF-36 scores on five subscales ( p < 0.001). The presence of comorbid illness was the most important predictor of HRQOL in CHC patients. However, CHC alone resulted in significantly lower SF-36 scores in all subscales and summary scales ( p ≤ 0.003) compared to those of the healthy U.S. population. There was no correlation between SF-36 scores and history of i.v. drug use or dependence, alcohol dependence, and serum aminotransferase levels. CONCLUSIONS: We conclude that unselected CHC patients presenting for medical evaluation have a reduced HRQOL, which is lower than that reported for CHC patients entering treatment trials. CHC alone is associated with significant impairment in HRQOL, but the presence of comorbid illness leads to further diminution in HRQOL.

Comorbid illness is an important determinant of health-related quality of life in patients with chronic hepatitis C.

Chronic hepatitis C (CHC) patients selected for entry into treatment trials have been reported to have impaired health-related quality of life (HRQOL). However, these trials have an inherent selection bias, and HRQOL in CHC patients may have been underestimated because of the exclusion of patients with comorbid illness. The aim of this study was to assess HRQOL in an unselected group of CHC patients and to identify factors associated with impairment in HRQOL. A total of 220 consecutive eligible CHC patients were enrolled from a hepatology clinic. HRQOL was assessed by the short form 36 (SF-36) and comorbid illnesses were assessed by an interview. CHC patients had significantly lower SF-36 scores in all subscales and in the summary scales when compared to those of the healthy general population in the United States (p < 0.001). Compared to CHC patients entering treatment trials, our patients had lower SF-36 scores on five subscales (p < 0.001). The presence of comorbid illness was the most important predictor of HRQOL in CHC patients. However, CHC alone resulted in significantly lower SF-36 scores in all subscales and summary scales (p < or = 0.003) compared to those of the healthy U.S. population. There was no correlation between SF-36 scores and history of i.v. drug use or dependence. alcohol dependence. and serum aminotransferase levels. We conclude that unselected CHC patients presenting for medical evaluation have a reduced HRQOL, which is lower than that reported for CHC patients entering treatment trials. CHC alone is associated with significant impairment in HRQOL, but the presence of comorbid illness leads to further diminution in HRQOL.

Validation of the side effect and life satisfaction (SEALS) inventory

Diminished quality of life (QOL) is a common feature of epilepsy. It is generally more severe among patients with poor seizure control but prevalent, to a clinically significant degree, even among those whose seizures are well controlled. People with epilepsy frequently report diminished socialization, negative self image, feelings of stigmatization, reduced earnings potential, and diminished hope and ambition. Problems with antiepileptic drug (AED) therapy are common, and AED therapy is recognized as an important determinant of health-related quality of life (HRQOL). A clinically efficient psychometric instrument is needed to measure its impact. The Side Effect and Life Satisfaction (SEALS) inventory is a 38-item, patient-completed questionnaire designed to measure satisfaction with AED therapy. We tested its construct validity in comparison with three widely used psychometric instruments of similar design, the Profile of Mood States (POMS), the Hospital Anxiety and Depression (HAD) scale, and the Medical Outcomes Study-Cognitive Functioning (MOS-COG) scale. All four instruments were completed by 307 epilepsy patients . A matrix of Pearson’s correlations was produced for the SEALS inventory and the comparative instruments. A statistically significant correlation was found for each planned comparison. We conclude that the SEALS inventory is a valid psychometric instrument, well suited for use in clinical investigations of AED therapy and in the practical, long-term management of epilepsy.

Physical disability in a cohort of persons with AIDS

Physical disability is one of the more important determinants of health-related quality of life in person with AIDS, although little information is available on specific physical functional deficits. The purpose of this study was to document the types, frequency, severity, and correlates of physical disability in persons with AIDS. The design was cross-sectional with assessment of disability at the initial evaluation for the AIDS Time-Oriented Health Outcome Study, an observational community-based cohort of persons with AIDS. Disability was measured by the HIV Health Assessment Questionnaire, a self-administered assessment of perceived difficulty in eight functional categories. Additional medical and demographic information was obtained from chart review, in addition to other standardized quality of life measures. The sample consisted of 546 persons, primarily white homosexual men, evaluated a mean of 475 days (SD, 474) after an AIDS-defining diagnosis. Ten to 50% of men reported some degree of activity-specific disability, mostly mild or moderate. Disability scores varied widely and tended to be most severe among those items considered to be high level 'instrumental activities of daily living'. Univariate correlations were strong between disability and number of symptoms, global health status, and the Medical Outcomes Study HIV fatigue index (r = -0.4223 to 0.5115 for men). Correlations between disability and either time from AIDS diagnosis or CD4 T-lymphocyte count were not statistically significant. For men, stepwise multiple regression showed that 26.9% of disability variance was explained by symptoms, 3.7% by the Medical Outcomes Study HIV fatigue index, and 1.8% by total number of opportunistic infections. We conclude that physical function is variable among persons with AIDS living in the community, with a substantial number experiencing mild to moderate deficits tending to occur in instrumental activities of daily living. Further studies should address the need for and efficacy of appropriate rehabilitation interventions in persons with AIDS experiencing physical disability.