Health‐related quality of life in Huntington's disease: Which factors matter most?

The aim of this article was to determine which aspects of Huntington's disease (HD) are most important with regard to the health‐related quality of life (HrQOL) of patients with this neurodegenerative disease. Seventy patients with HD participated in the study. Assessment comprised the Unified Huntington's Disease Rating Scale (UHDRS) motor, cognitive and functional capacity sections, and the Beck Depression inventory. Mental and physical HrQOL were assessed using summary scores of the SF‐36. Multiple regression analyses showed that functional capacity and depressive mood were significantly associated with HrQOL, in that greater impairments in HrQOL were associated with higher levels of depressive mood and lower functional capacity. Motor symptoms and cognitive function were not found to be as closely linked with HrQOL. Therefore, it can be concluded that, depressive mood and greater functional incapacity are key factors in HrQOL for people with HD, and further longitudinal investigation will be useful to determine their utility as specific targets in intervention studies aimed at improving patient HrQOL, or whether other mediating variables. As these two factors had a similar association with the mental and physical summary scores of the SF‐36, this generic HrQOL measure did not adequately capture and distinguish the true mental and physical health‐related HrQOL in HD. © 2008 Movement Disorder Society     

Health‐related quality‐of‐life scales in Parkinson's disease: Critique and recommendations

Health‐related quality of life is an important patient‐reported outcome used in intervention trials and for monitoring the consequences of health status on physical, mental, and social domains. Parkinson's disease is a complex disorder that strongly affects patients' quality of life. Several health‐related quality of life tools have been used in Parkinson's disease. A Movement Disorder Society Task Force was commissioned to rate the psychometric quality of available health‐related quality of life scales as applied to Parkinson's disease. Following the methodology adopted by previous work of the Movement Disorder Society Task Force, a review of generic and specific health‐related quality of life scales applied in studies on Parkinson's disease was completed. Considering the scales from 3 perspectives—use in Parkinson's disease, use by multiple research groups, and clinimetric properties—a final classification as “recommended,” “suggested,” or “listed” was applied to each reviewed instrument. Four generic scales (EuroQoL, Nottingham Health Profile, 36‐Item Short‐Form Health Survey, and Sickness Impact Profile) and 5 specific scales (39‐Item Parkinson's Disease Questionnaire, Parkinson's Disease Questionnaire Short Form, Parkinson's Disease Quality of Life Questionnaire, Parkinson's Impact Scale, and Scales for Outcomes in Parkinson's Disease–Psychosocial) reached the level of “recommended.” The 39‐item Parkinson's Disease Questionnaire is the most thoroughly tested and applied questionnaire. Three other generic measures (Quality of Life Questionnaire 15D, Schedule for the Evaluation of Individual Quality of Life‐Direct Weighting, and World Health Organization Quality of Life Assessment Short Version) and the specific Parkinson's Disease Quality of Life Scale are “suggested.” With a little additional effort in completing the stipulated requirements, they could reach the “recommended” level. At present there is a wide variety of health‐related quality of life measures for application in the Parkinson's disease setting, and the task force does not recommend the development of a new scale. Selection of the most appropriate instrument for a particular objective requires consideration of the characteristics of each scale and the goals of the assessment. © 2011 Movement Disorder Society     

Predicting health‐related quality of life 2 years after moderate‐to‐severe traumatic brain injury

Aims

To describe health‐related quality of life (HRQL) 2 years after moderate‐to‐severe traumatic brain injury (TBI) and to assess predictors of HRQL.

Materials and methods

A prospective cohort study of 91 patients, aged 16–55 years, admitted with moderate‐to‐severe TBI to a trauma referral centre between 2005 and 2007, with follow‐up at 1 and 2 years. Mean age was 31.1 (SD = 11.3) years, and 77% were men. Injury severity was evaluated by the Glasgow Coma Scale (GCS), head CT scan (using a modified Marshall Classification), Injury Severity Score (ISS) and post‐traumatic amnesia (PTA). The Functional Independence Measure (FIM), Community Integration Questionnaire (CIQ), Beck Depression Inventory (BDI) and Medical Outcomes 36‐item Short Form Health Survey (SF‐36) were administered at follow‐up visits. The main outcome measures were the Physical Component Summary (PCS) and Mental Component Summary (MCS) of the SF‐36.

Results

HRQL appears to be relatively stable between 1 and 2 years after injury. In the multivariate linear regression, younger age (β = ?0.20, P = 0.032), more severe TBI (β = 0.28, P = 0.016), more severe overall trauma (β = 0.22, P = 0.026), higher levels of community integration (β = 0.36, P = 0.019) and higher positive change in PCS scores from 1 to 2 years (β = 0.41, P < 0.001) predicted better self‐reported physical health 2 years post‐TBI. Lower scores for depression (β = ?0.70, P < 0.001) and a higher positive change in MCS scores (β = 0.62, P < 0.001) predicted better self‐reported mental health.

Conclusions

Future interventions should focus on aspects related to HRQL that are more easily modified, such as physical functioning, home and social integration, productivity, and mental and emotional status.

     

Patient and caregiver quality of life in Huntington's disease

Little is known about subjective perceptions of quality of life (QOL) in Huntington's disease (HD). The current study determined correlates of patient and caregiver QOL and assessed change over time. Participants were 22 patient‐caregiver dyads, who rated QOL at baseline and 6 months later. Overall, patients' functional and cognitive impairment were significantly correlated with patient and caregiver QOL. Neuropsychiatric symptoms had differential impact on patient and caregiver QOL. Furthermore, when patients recalled their QOL about a previous time, their recall may have been negatively biased. Clinical implications of results are discussed. Future work is needed because subjective QOL is an important outcome measure in therapeutic trials. © 2008 Movement Disorder Society     

Self‐management rehabilitation and health‐related quality of life in Parkinson's disease: A randomized controlled trial

The purpose of this randomized controlled trial was to determine whether increasing hours of self‐management rehabilitation had increasing benefits for health‐related quality of life (HRQOL) in Parkinson's disease beyond best medical treatment, whether effects persisted at 2 and 6 months of follow‐up, and whether targeted compared with nontargeted HRQOL domains responded more to rehabilitation. Participants on best medication therapy were randomly assigned to one of three conditions for 6 weeks intervention: 0 hours of rehabilitation; 18 hours of clinic group rehabilitation plus 9 hours of attention control social sessions; and 27 hours of rehabilitation, with 18 in clinic group rehabilitation and 9 hours of rehabilitation designed to transfer clinic training into home and community routines. Results (N = 116) showed that at 6 weeks, there was a beneficial effect of increased rehabilitation hours on HRQOL measured with the Parkinson's Disease Questionnaire‐39 summary index (F(1,112) = 6.48, η = 0.23, CI = 0.05–0.40, P = 0.01). Benefits persisted at follow‐up. The difference between 18 and 27 hours was not significant. Clinically relevant improvement occurred at a greater rate for 18 and 27 hours (54% improved) than for 0 hours (18% improved), a significant 36% difference in rates (95% CI = 20–52% difference). Effects were largest in two targeted domains: communication and mobility. More concerns with mobility and activities of daily living at baseline predicted more benefit from rehabilitation. © 2010 Movement Disorder Society     

Predictors of deterioration in health‐related quality of life in Parkinson's disease: Results from the DATATOP trial

The aim of this study was to investigate factors associated with decline in health‐related quality of life in Parkinson's disease, by a retrospective cohort study from referral centers in Canada and the United States. Subjects were patients with early Parkinson's disease (N = 362) enrolled in a clinical trial of deprenyl (selegiline) and tocopherol (DATATOP) and followed prospectively. The main outcome measure was change in health‐related quality of life using SF‐36 Mental and Physical Component Summary scores. The mean interval between SF‐36 measurements was 1.7 ± 0.1 years, beginning 5 to 6 years after enrolment into the trial. In multivariable analysis, baseline Hamilton Depression Scale scores and self‐rated cognitive function were associated with subsequent decline in Physical Component Summary scores, while older age and Schwab and England activities of daily living scores were associated with decline in Mental Component Summary scores. The Postural Instability Gait Disorder score was the only variable found to decline concurrently with HRQOL. Our results suggest that depression, self‐rated cognitive function, and one's degree of functional independence are predictors of subsequent changes in HRQOL. Our focus in clinical care needs to be broadened beyond assessing and treating Parkinsonism, recognizing the impact of mood, cognition and function on HRQOL. © 2007 Movement Disorder Society     

Fatigue in multiple sclerosis: associations with health‐related quality of life and physical performance

Background and purpose: Fatigue is a common, but still one of the least understood symptoms in multiple sclerosis (MS). We aimed to investigate whether fatigue was associated with demographic‐, clinical‐, health‐related quality of life (HRQoL)‐ and physical performance variables, and whether change in fatigue after treatment was associated with changes in HRQoL and physical performance. Methods: Sixty patients were included for inpatient physiotherapy. Fifty‐six patients completed the study and were available for analysis. Fatigue (Fatigue Severity Scale; FSS), HRQoL (Multiple Sclerosis Impact Scale; MSIS‐29) and physical performance (walking ability and balance) were assessed at screening, baseline, after treatment and at follow‐up after 3 and 6 months. We analysed possible associations between fatigue and other variables at baseline by regression models, and between change in fatigue versus changes in both HRQoL and physical performance variables after physiotherapy by correlation analysis. Results: Fatigue at baseline was associated with HRQoL (explained 21.9% of variance), but not with the physical performance tests. Change in fatigue was correlated with change in HRQoL, but not with changes in physical performance. All measures were improved after treatment (P ≤ 0.001). While improvements in fatigue and HRQoL were lost at follow‐up, improvements in physical performance tests were maintained for at least 6 months (P ≤ 0.05). Conclusions: Fatigue was associated with HRQoL at baseline. Improvement in fatigue seemed to be related to other factors than improvement in physical performance. A broader strategy including both physical and psychological dimensions seems to be needed to improve fatigue over the long‐term.     

Health‐related quality of life in early Parkinson's disease: The impact of nonmotor symptoms

Nonmotor symptoms (NMS) are common in patients with established Parkinson's disease (PD) and have a major impact upon quality of life. We investigated the significance of NMS in relation to health‐related quality of life (HRQoL) in patients with newly diagnosed PD. Patients and healthy controls were recruited as part of the Incidence of Cognitive Impairment in Cohorts with Longitudinal Evaluation in Parkinson's Disease Study. Prevalence of NMS was determined with the Non‐Motor Symptom Questionnaire. HRQoL was recorded with the 39‐item Parkinson's Disease Quality of Life Questionnaire (PDQ‐39). Further assessments included measures of motor disability, depression, sleep, and cognition. One hundred and fifty‐eight patients with newly diagnosed PD and 99 controls participated in this cross‐sectional study. Patients reported greater numbers of NMS than controls (mean 8.3 ± 4.3 versus 2.8 ± 2.5 symptoms; P < 0.001). Patients reported lowest HRQoL in the domains assessing bodily discomfort, mobility, and activities of daily living. Motor and nonmotor symptoms impacted negatively upon HRQoL scores. Patients with the postural instability and gait difficulty motor subtype reported worse HRQoL, compared with those with tremor‐dominant disease. Depression (P < 0.001), incomplete bowel emptying (P < 0.001), anxiety (P < 0.001), impaired concentration (P < 0.001), memory complaints (P < 0.001), and insomnia (P = 0.001) had the greatest negative impact upon HRQoL. NMS are common in patients with early PD and represent a significant cause of poorer health‐related quality of life. Cognitive, neuropsychiatric, and sleep disturbances are particularly associated with reduced well‐being. Screening and management of these symptoms should be prioritized at the time of diagnosis. © 2013 International Parkinson and Movement Disorder Society