Health‐related quality of life in multiple system atrophy

Although multiple system atrophy (MSA) is a neurodegenerative disorder leading to progressive disability and decreased life expectancy, little is known about patients' own evaluation of their illness and factors associated with poor health‐related quality of life (Hr‐QoL). We, therefore, assessed Hr‐QoL and its determinants in MSA. The following scales were applied to 115 patients in the European MSA‐Study Group (EMSA‐SG) Natural History Study: Medical Outcome Study Short Form (SF‐36), EQ‐5D, Beck Depression Inventory (BDI), Mini‐Mental state examination (MMSE), Unified MSA Rating Scale (UMSARS), Hoehn & Yahr (H&Y) Parkinson's disease staging scale, Composite Autonomic Symptom Scale (COMPASS), and Parkinson's Disease Sleep Scale (PDSS). Forty‐six percent of patients had moderate to severe depression (BDI ≥ 17); Hr‐QoL scores on the SF‐36 and EQ‐5D were significantly impaired. Pain, the only domain with similar scores in MSA and published PD patients, was reported more frequently in patients with MSA‐P (predominantly parkinsonian motor subtype) than MSA‐C (predominantly cerebellar motor subtype; 76% vs. 50%; P = 0.005). Hr‐QoL scores correlated most strongly with UMSARS motor, COMPASS, and BDI scores but not with MMSE scores, age at onset, or disease duration. The COMPASS and UMSARS activities of daily living scores were moderate‐to‐strong predictors for the SF‐36 physical summary score and the BDI and UMSARS motor scores for the SF‐36 mental summary score. This report is the first study to show that Hr‐QoL is significantly impaired in MSA. Although not all possible factors related to impaired Hr‐QoL in MSA could be assessed, autonomic dysfunction, motor impairment, and depression were most closely associated with poor Hr‐QoL, and therapeutic management, therefore, should concentrate upon these aspects of the disease. © 2006 Movement Disorder Society     

Health‐related quality of life in Guillain‐Barré syndrome patients: a systematic review

Guillain‐Barré syndrome (GBS) encompasses a broad spectrum of health‐related quality of life (HRQL) determinants, including mobility, fatigue, pain, and depression. We systematically reviewed the literature on functional outcome domains in which GBS patients experience limitations in the short and long terms and evaluated determinants of HRQL in GBS patients. MEDLINE and EMBASE were systematically searched by two independent reviewers for articles covering HRQL data of GBS patients. Of 730 abstracts screened, 17 articles covering data of 14 studies matched the selection criteria. The included articles showed that many GBS patients experienced physical limitations, even years after the acute phase of the disease, while results were inconsistent for perceived levels of pain, fatigue, and general mental well‐being. Only three papers covered HRQL assessments at more than one time point, generally showing large improvements in HRQL in the first year after GBS onset, but not thereafter. We appraised the methodological quality of included studies using a 13‐item checklist; none of the articles fulfilled all items and only seven articles presented data on correlations between HRQL and determinants. In conclusion, the majority of studies on HRQL in GBS patients are cross‐sectional and of low methodological quality. This paper provides guidance for much needed high‐quality studies on patterns of patient‐perceived recovery after GBS onset.     

Health‐related quality‐of‐life and treatment targets in myasthenia gravis

Introduction: The aim of this study was to determine factors affecting health‐related quality of life (HRQOL) and to propose appropriate treatment targets for patients with myasthenia gravis (MG). Methods: We evaluated 640 consecutive patients with MG seen at 11 neurological centers. Two‐year follow‐up data were obtained for 282 patients. Correlations between detailed clinical factors and the Japanese version of the 15‐item MG‐specific QOL scale score were analyzed. Results: In a cross‐sectional analysis of 640 MG patients, multivariate regression revealed that disease severity, as evaluated by the MG Composite (P < 0.0001), total dose of oral prednisolone during the last year (P = 0.002), and Cushingoid appearance index (P = 0.0004), showed significant negative effects on HRQOL, but the quantitative MG score and current prednisolone dose did not. Conclusions: Achieving minimal manifestations (MM) status or better with prednisolone ≤5 mg/day was found to exert a major positive impact on HRQOL in both the cross‐sectional and 2‐year follow‐up patient samples and can be recommended as a treatment target. Muscle Nerve 50: 493–500, 2014     

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     

Disagreeing about development: An analysis of parent‐teacher agreement in ADHD symptom trajectories across the elementary school years

Objectives

It is well‐known that in cross‐sectional analyses, agreement between informants is modest as best when rating attention‐deficit/hyperactivity disorder and other disruptive behaviour disorder symptoms. We here aimed to develop recommendations for the use of multi‐informant data in the context of longitudinal developmental analyses that examine symptom trajectories over time.

Method

Using parallel process modelling, we estimated parent–teacher agreement in inattention and hyperactivity/impulsivity symptom initial levels and slopes across the elementary school years (ages 7, 9, and 11) for a community sample of n = 1,388 youth. We also used these models to examine whether initial levels and slopes differed significantly across informants.

Results

Informant agreement was low to moderate and higher for inattention slopes (r = .47) than for hyperactivity/impulsivity slopes (r = .23). Parents and teachers reported opposite developmental trends for inattention with teachers reporting declines and parents reporting increases over time. Parents reported overall higher levels of hyperactivity/impulsivity, but there were no average informant differences in slopes.

Conclusion

Of the options available, we recommend specifying separate but correlated factors for different informants in developmental analyses of attention‐deficit/hyperactivity disorder. This can be achieved within latent growth curve and growth mixture models.

     

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     

Health‐related quality of life and restless legs syndrome among women in Sweden

Aim: Restless legs syndrome (RLS) is a common neurological movement disorder with a female preponderance, an increasing prevalence with age and comorbidity. Previous studies on the relationship between health‐related quality of life (HRQOL) and RLS are still sparse but knowledge is increasing. The aim of this study was to evaluate the unique impact of RLS on HRQOL in a population‐based sample. Methods: A random sample of 5000 women aged 25–64 years was selected from the general Swedish population. The women were sent diagnostic questions on RLS together with the Short Form 12 (SF‐12) questionnaire for assessment of physical and mental HRQOL. The unique burden of RLS on HRQOL was analyzed by excluding RLS‐positive women from four self‐reported diagnostic groups (diabetes, depression, heart problems, muscle and joint pain) and by excluding subjects with these diagnoses from the group of RLS‐positive women. Results: Compared with mental SF‐12 scores for the RLS‐negative women in our population, mental HRQOL of the RLS sample in our study was lower in every age group but not significantly lower in the age group 35–44 years. Physical SF‐12 scores for RLS‐positive women were also below scores for RLS‐negative women in every age group but significance was only found in women between 45 and 54 years. A unique burden of RLS on HRQOL remained after statistical adjustment for comorbidities. Conclusion: RLS‐positive women had an impaired mental HRQOL compared to RLS‐negative women in the studied population. The physical aspects of HRQOL were less affected among RLS‐positive women. The impaired well‐being among women with RLS further strengthens the importance of identifying women with this condition and evaluating their need for medication or other actions in order to improve their quality of life.     

Determinants of health‐related quality of life in anti‐MAG neuropathy: a cross‐sectional multicentre European study

Our objective was to assess determinants of quality of life (QoL) in anti‐myelin associated glycoprotein antibody (MAG) neuropathy. The SF‐36 questionnaire was assessed in 55 patients, from Marseille, Angers (France) and Birmingham (UK). Routine clinical evaluations included Medical Research Council (MRC) sum score, inflammatory neuropathy cause and treatment (INCAT) sensory score, inflammatory Rasch‐built overall disability score (I‐RODS), ataxia score, Jamar grip dynamometry, timed 10‐m walk, neuropathic pain symptom inventory (NPSI) score, and fatigue severity score (FSS). Physical component summary (PCS) and mental component summary (MCS) of the SF36 questionnaire were significantly lower than in reported normal subjects of both countries (p < 0.001). All SF‐36 domains correlated with I‐RODS, except MCS for which significance was, however, approached (p = 0.056). PCS correlated with MRC sum score, ataxia score, timed 10‐m walk, tremor, Jamar grip dynamometry, NPSI pain score, FSS and level of social support. MCS correlated exclusively with FSS and level of social support. In multivariate regression, PCS was associated independently with I‐RODS (p < 0.001) and NPSI pain score (p = 0.011), whereas MCS was associated independently with FSS (p = 0.022). QoL is accurately predicted in anti‐MAG neuropathy by the I‐RODS and FSS, lending support to their use in clinical and research settings. Effective measures to improve QoL should include tremor and neuropathic pain treatment, fatigue management, and improved social support.     

Assessing health-related quality of life in European children and adolescents

Childhood health and illness have changed considerably over the past century calling for an increasing awareness of mental health problems. Consequently, the assessment of mental health problems is of major importance, not only focussing on mental health diagnoses but also on components of health-related quality of life (HRQOL) and functioning with regard to the impact of an illness or injury, medical treatment, or health care policy. Recently, a number of HRQOL measures for children and adolescents have been developed and applied in a number of studies. The current paper presents multi-cultural tools for the assessment of HRQOL, which were developed within European projects, describes the application of these tools in cross-national studies and pinpoints important determinants of HRQOL and mental health problems. Future research needs are discussed.     

Clinical spectrum and quality of life in patients with chronic polyneuropathy: A cross‐sectional study

Chronic polyneuropathy is a disabling condition of the peripheral nerves, characterized by symmetrical sensory motor symptoms and signs. There is paucity of studies on the etiological spectrum of polyneuropathy and its impact on quality of life (QoL). The present cross‐sectional study in a referral based tertiary care center in North India found diabetic neuropathy as the commonest cause (25.5%) amongst 212 patients with chronic polyneuropathy. Idiopathic axonal polyneuropathy was present in 14.2% patients. Leprosy presenting as confluent mononeuritis multiplex constituted 11.3% of the patients. Additionally, it revealed a significantly worse QoL in these patients in all domains measured by short form (SF‐36). This is the first study conducted in India to determine the QoL in chronic neuropathy patients. The current study demonstrates the clinical feasibility and applicability of the SF‐36 generic health status in patients with polyneuropathies.