Health related quality of life in Parkinson''s disease: a systematic review of disease specific instruments

Objective: To compare and contrast disease-specific quality of life instruments in Parkinson''s disease and assess their clinimetric properties. Methods: Two reviewers independently evaluated both thoroughness and results of studies regarding clinimetric characteristics of identified scales. Results: Twenty studies were found reporting on the clinimetric properties of four scales. The content validity of the Parkinson''s disease questionnaire-39 item version (PDQ-39), the Parkinson''s disease quality of life questionnaire (PDQL), and the "Fragebogen Parkinson LebensQualität" (Parkinson Quality of Life questionnaire; PLQ) was adequate to good, but for the Parkinson''s impact scale (PIMS) it was insufficient. Construct validity of both the PDQ-39 and the PDQL was good, but for the PLQ and the PIMS this was insufficiently evaluated. Internal consistency of all scale totals and of subscale totals of the PDQL were good, whereas for the social support subscale of the PDQ-39 and four subscales of the PLQ this was inadequate. Test-retest reliability was not evaluated for the PDQL and was adequate in the other scales. Responsiveness was partially established for the PDQ-39, and not assessed for the other scales. The number of available translations, as well as the number of studies in which these instruments were used, differed considerably. Conclusions: The selection of an instrument partially depends on the goal of the study. In many situations however, the PDQ-39 will probably be the most appropriate HRQoL instrument. The PDQL may be considered as an alternative, whereas the PLQ may be considered in studies involving German speaking patients with Parkinson''s disease. Use of the PIMS should be considered only as a means of identifying areas of potential problems.     

Predictors of health-related quality of life and costs in adults with epilepsy: a systematic review

Purpose: Given the high burden of epilepsy on both health‐related quality of life (HRQoL) and costs, identification of factors that are predictive of either reduced HRQoL or increased expenditure is central to the better future targeting and optimization of existing and emerging interventions and management strategies for epilepsy. Methods: Searches of Medline, Embase, and Cochrane Library (up to July 2010) to identify studies examining the association between demographic, psychosocial, and condition‐related factors and HRQoL, resource utilization or costs in adults with epilepsy. For each study, predictor factor associations were summarized on the basis of statistical significance and direction; the results were then combined across studies. Key Findings: Ninety‐three HRQoL and 16 resource utilization/cost studies were included. Increases in seizure frequency, seizure severity, level of depression, and level of anxiety and presence of comorbidity were strongly associated with reduced HRQoL. The majority of studies were cross‐sectional in design and had an overall methodologic quality that was judged to be “moderate” for HRQoL studies and “poor” for health care resource or costs studies. In the 53 multivariate studies, age, gender, marital status, type of seizure, age at diagnosis, and duration of epilepsy did not appear to be associated with HRQoL, whereas the predictive influence of educational and employment status, number of antiepileptic drugs (AEDs) and AED side effects was unclear. The association between predictive factors and HRQoL appeared to be consistent across individuals whether refractory or seizures controlled or managed by AEDs. There were insufficient multivariate studies (five) to reliably comment on the predictors of resource utilization or cost in epilepsy. Significance: In addition to seizure control, effective epilepsy management requires the early detection of those most at risk of psychological dysfunction and comorbidity, and the targeting of appropriate interventions. There is need for more rigorous studies with appropriate multivariate statistical methods that prospectively investigate the predictors of HRQoL, resource utilization, and costs in epilepsy.     

Epilepsy in the first year of life: a review.

The prevalence of epilepsy is highest during the first year of life. Approximately 50% of patients with seizure onset between 1 and 12 months of age suffer from West syndrome. The rest have one of 12 well-delineated epilepsy syndromes, or in most cases have what are classified as generalized or partial seizures. The outcome of infants with partial seizures is significantly worse than that of patients with generalized seizures. This is true not only for symptomatic partial seizures but also for a subgroup of infants with cryptogenic partial seizures.     

Paediatric quality of life instruments: a review of the impact of the conceptual framework on outcomes

With an increasing number of paediatric quality of life (QOL) instruments being developed, it is becoming difficult for researchers and clinicians to select the most appropriate instrument. Reviews of QOL instruments tend to report only basic properties of the instruments such as domains and psychometric properties. This paper seeks to appraise critically the conceptual underpinnings of paediatric QOL instruments. A systematic review was conducted to identify QOL instruments for children aged 0 to 12 years, and to examine and compare their conceptual frameworks, definitions employed, and structure. Both generic and condition-specific measures were reviewed. Fourteen generic and 25 condition-specific QOL instruments were identified. Eleven types of definition of QOL and health-related QOL and three theories of QOL were identified. QOL was measured by a variety of domains including emotional, social and physical health, and well-being. Items commonly assessed difficulties, or intensity/frequency of feelings/symptoms, in contrast to positive aspects of life and happiness. The findings highlight the diversity that is apparent in the conceptualization of paediatric QOL and draw attention to the lack of empirical evidence for many of the fundamental assumptions. The impact of the conceptual underpinnings of the instruments on the resulting QOL scores is discussed.     

Factors affecting quality of life in Hungarian adults with epilepsy: A comparison of four psychiatric instruments

PurposeWe investigated the impact of 19 factors on life quality in Hungarian patients with epilepsy. Wellbeing was evaluated by several inventories to investigate the impact of factors in more detail.MethodsA cross-sectional study was performed in 170 patients. Wellbeing was evaluated with the WHO-5 Well-being Index (WHOQOL-5), Diener Satisfaction with Life Scale (SwLS), and the Quality of Life in Epilepsy-31 Questionnaire (Qolie-31). We investigated their association with demographic characteristics, general health status, epilepsy, and its treatment. The impact of these factors on illness perception (Illness Perception Questionnaire, IPQ) was also studied.ResultsThe four measures correlated highly significantly. In addition, the predictive power of factors was comparable with the four inventories as evaluated by Multiple Regression. Factors explained 52%, 41%, 63% and 46% in the variance of WHOQOL-5, SwLS, Qolie-31, and IPQ scores, respectively. However, associations with particular factors were instrument-specific. The WHOQOL-5 was associated with factors indicative of general health. SwLS scores were associated with health-related and several demographic factors. Neither showed associations with epilepsy-related factors. All four categories of factors were associated with Qolie-31 and IPQ scores. Factors had an additive impact on IPQ, but not on Qolie-31.SignificanceOur findings reveal interactions between the method of life quality assessment and the factors that are identified as influencing life quality. This appears to be the first study that analyses the factors that influence illness perception in epilepsy patients, and suggests that the IPQ may become a valuable tool in epilepsy research.     

A systematic review of quality of life in adults with muscle disease

We reviewed the literature on how muscle disease affects quality of life compared to healthy controls, and the factors that influence the effects of muscle disease on quality of life. We also wanted to know whether quality of life differed between muscle diseases. We searched online databases and identified 26 relevant studies. The quality of each study was assessed, results sections analysed and a database of factors associated with quality of life developed. We graded the level of evidence supporting the association between each factor and quality of life as inconclusive, moderate or high. Compared to controls, muscle disease compromised quality of life in all areas of functioning. There was little evidence to suggest that quality of life differed significantly between muscle diseases. There was a high level of evidence suggesting that disease severity, pain, fatigue, and mood significantly affect quality of life. There was a moderate level of evidence suggesting that illness perceptions, coping strategies, age and gender affect quality of life. Several factors had an inconsistent level of evidence.     

Validity studies of quality of life instruments for eating disorders: systematic review of the literature

To conduct a systematic review of studies that evaluated quality of life (QOL) among individuals with eating disorders, to analyze the characteristics of specific QOL instruments for eating disorders. Bibliographic searches were conducted in 6 databases and manual searches in 2 journals, covering the period from January 1975 to June 2008. The search strategies provided a total of 29,537 references. Out of the 41 studies that met the inclusion criteria for this review, 5 reported on the validation process for 4 specific instruments for eating disorders. Among the 4 specific QOL instruments for eating disorders, 3 presented adequate development procedures and psychometric properties. However, further research is needed to prove the validity and applicability of these instruments. Additional validation studies are needed, especially in relation to patients who deny that they have a disorder.     

The effect of perceived forgetfulness on quality of life in older adults; a qualitative review

BACKGROUND: Approximately 50% of older individuals perceive themselves as being forgetful. OBJECTIVE: The objective of this review is to get an overview of previous research on the relation between perceived forgetfulness (in the absence of objective memory deficit) and quality of life in older individuals. Findings in previous research might be a starting point for further research and possible future interventions. METHODS: Scientific papers that investigated the relation between subjective memory complaints and quality of life were searched. Two independent raters scored the articles on their methodology. The methodological quality was taken into account when conclusions were drawn. RESULTS: The literature search resulted in 682 articles, of which five studies met the inclusion criteria. Although the five studies differed in their methodology, the findings of the methodologically adequate studies show a relation between memory complaints and a diminished quality of life in the elderly. CONCLUSIONS: The negative impact that subjective memory complaints can have on quality of life makes it important to acknowledge forgetfulness as a serious issue in the life of older individuals. However, more research is needed to explore the relationship between subjective memory complaints and quality of life, also with regard to the influence of depression and objective memory performance.     

Validation of quality of life instruments in ALS.

BACKGROUND: Non-invasive ventilation (NIV) probably improves survival in ALS, but its effect on quality of life (QoL) is less clear. Most potentially useful QoL instruments have not been validated in this context. METHODS: We assessed the validity (multi-trait multi-method analysis), internal consistency (Cronbach's alpha), test-retest stability (intra-class correlations) and response to disease severity and NIV (effect size) of two generic instruments, the Short Form 36 (SF-36) and the General Well-being Schedule; two specific instruments, the Chronic Respiratory Disease Questionnaire (CRQ) and the Sleep Apnoea QoL Index (SAQLI), and a scale of daytime sleepiness, the Epworth Sleepiness Scale (ESS) in 23 subjects with ALS. Functional status, limb and axial muscle strength, and maximum inspiratory pressure were assessed, together with the QoL measurements, every two months. RESULTS: All instruments showed good or excellent validity, internal consistency and test-retest stability overall. Subjects without symptomatic respiratory compromise had difficulty identifying activities for the CRQ dyspnoea domain and symptoms for the SAQLI symptoms domain. Marked floor effects were observed in the physical function and role domains of the SF-36. Domains assessing sleep-related problems and mental health showed greater effect of differences in respiratory function than functional status, and the greatest response to NIV. CONCLUSIONS: Of the generic instruments the SF-36 was most useful, but limited by floor effects. Of the specific instruments, the SAQLI symptoms domain was most responsive to NIV, but this instrument took longer to complete, and several items were inappropriate. The CRQ and ESS are valid and responsive alternatives.     

Epilepsy and challenging behaviour in adults with intellectual disability: A systematic review

Background: Epilepsy and challenging behaviour are both highly prevalent in the intellectual disability (ID) population and it is thus crucial to understand any possible associations between the two.

Method: PsycINFO, MEDLINE, Embase, CINAHL and Web of Science were searched for quantitative data about epilepsy and any forms of challenging behaviour in adults with ID.

Results: A total of 25 articles were included in the review. Overall the evidence suggests that while epilepsy is not a good explanatory variable for the presence of challenging behaviour; the relationship is complex. However, for some people with epilepsy and for certain types of challenging behaviour a link may exist.

Conclusions: Given the possible link between epilepsy-related factors such as seizure type and specific subgroups of challenging behaviour, investigating these relationships further and particularly exploring how to best measure challenging behaviour in people with epilepsy could be of great clinical benefit.     

Obsessive-compulsive disorder: psychosocial consequences and quality of life: a review

The considerable restrictions and psychosocial consequences associated with obsessive-compulsive disorder (OCD) are often multiform and expansive. The subjective distress perceived by individuals with OCD is influenced by multidimensional and interindividually varying factors beyond symptom severity. Therefore, besides symptom scales, generic (general) and illness-specific measures of quality of life (QoL) represent important markers of well-being. The repeatedly described serious consequences of OCD in social, functional, and emotional fields, which often persist even after treatment, refer to the necessity to increasingly address these aspects in treatment planning. Interventions would be desirable which directly involve the patient's social environment and more specifically target those problems which are associated with the present symptom dimension (e.g., contamination/washing).     

Epilepsy in low-grade gliomas: the impact on cognitive function and quality of life

Low-grade gliomas frequently are associated with epilepsy. The purpose of this study is to determine the impact of epilepsy and antiepileptic drug (AED) treatment on cognitive functioning and health-related quality of life (HRQOL) in these patients. One hundred fifty-six patients without clinical or radiological signs of tumor recurrence for at least 1 year after histological diagnosis and with an epilepsy burden (based on seizure frequency and AED use) ranging from none to severe were compared with healthy controls. The association between epilepsy burden and cognition/HRQOL was also investigated. Eighty-six percent of the patients had epilepsy and 50% of those using AEDs actually were seizure-free. Compared with healthy controls, glioma patients had significant reductions in information processing speed, psychomotor function, attentional functioning, verbal and working memory, executive functioning, and HRQOL. The increase in epilepsy burden that was associated with significant reductions in all cognitive domains except for attentional and memory functioning could primarily be attributed to the use of AEDs, whereas the decline in HRQOL could be ascribed to the lack of complete seizure control. In conclusion, low-grade glioma patients suffer from a number of neuropsychological and psychological problems that are aggravated by the severity of epilepsy and by the intensity of the treatment.