Quality of Life measures for dementia.
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ABSTRACT:
SUBMITTER: Ready RE
PROVIDER: S-EPMC155631 | biostudies-literature | 2003 Apr
REPOSITORIES: biostudies-literature
Publications
Quality of Life measures for dementia.
Ready Rebecca E RE Ott Brian R BR
Health and quality of life outcomes 20030423
Over the past 10 years, several instruments developed specifically for the assessment of Quality of Life (QOL) in dementia have been introduced. The goal of the current review is to present, compare, and critique existing QOL measures for dementia populations to assist investigators and clinicians in selecting the optimal inventory for their specific needs. Nine measures are reviewed with a focus on conceptualizations of QOL, psychometric data, targeted patient population, and administration and ...[more]
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Project description:In the UK, there are currently 800 000 people living with dementia. This number is expected to double in the next 20 years. Two-thirds of people with dementia live in the community supported by informal carers. Caring for a person with dementia has adverse effects on psychological, physical, social wellbeing and quality of life. The measurement of quality of life of carers of people with dementia is increasingly of interest to health and social care practitioners and commissioners, policymakers, and carers themselves. However, there is lack of consensus on the most suitable instrument(s) for undertaking this.A systematic review of the literature using COSMIN methodology. Searching of electronic databases (Medline, PsycINFO, CINAHL and Web of Science), reference list and citation searching of key papers was undertaken. COSMIN methodology was used to simultaneously extract data from and assess methodological quality of included studies, and make a recommendation for the instrument with the most high quality evidence for its measurement properties.Ten instruments were suitable for inclusion in this review. The Carer well-being and support questionnaire (CWS) has the best quality evidence for the greatest number of measurement of properties. The Caregiver Well-Being Scale is also worthy of consideration. There is not presently a measure which could be recommended for use in economic evaluations, however the Impact of Alzheimer's Disease on the Caregiver questionnaire (IADCQ) could potentially be used following further investigation of its measurement properties in a representative population.The CWS is the most appropriate instrument to recommend for the assessment of quality of life in informal carers of people with dementia at present. All instruments included in this review would benefit from more rigorous evaluation of their measurement properties.
| S-EPMC5851581 | biostudies-literature
Project description:Though many people with multiple sclerosis (MS) have comorbidities, the use of generic and disease-specific health related quality of life (HRQOL) scales to discriminate the effects of comorbidity has not been established. The utility of these scales to discriminate differences between persons with varying levels of disability is also unknown.Using online questionnaires, a convenience sample of Albertans with MS was recruited between July 2011 and March 2013. Participants completed demographic questions, a validated comorbidity questionnaire, a self-reported disability scale, and the following HRQOL scales: the Short Form (SF)-36, SF-6D, Health Utilities Index-Mark III (HUI-III), and Multiple Sclerosis Quality of Life-54 (MSQOL-54). The ability of each HRQOL scale to distinguish between comorbidity groups was assessed using a one-way analysis of covariance, adjusting for age, sex, disease course, and disability level.Five hundred sixty three participants completed all relevant questionnaires. All HRQOL measures distinguished between persons with or without depression, while none were able to distinguish between participants with or without hypertension, thyroid disease, irritable bowel syndrome, or osteoporosis. The SF-36 physical scale, SF-6D, HUI-III, and MSQOL-54 physical scales were able to distinguish between all disability groups, though the HUI-III was better able to distinguish between individuals with moderate versus severe disability.Disease-specific measures would discriminate better between those with and without comorbidities than generic-specific measures and the HUI-III would discriminate best between persons with differing severities of disability. Generic or disease-specific measures may be useful in future studies examining the effects of comorbidity in MS and the effects of treatment of comorbidities in MS.
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Project description:Several measures of oral health-related quality of life have been developed for children. The most frequently used are the Child Perceptions Questionnaire (CPQ), the Child Oral Impacts on Daily Performances (C-OIDP) and the Child Oral Health Impact Profile (COHIP). The aim of this study was to assess the methodological quality of the development and testing of these three measures.A systematic search strategy was used to identify eligible studies published up to December 2012, using both MEDLINE and Web of Science. Titles and abstracts were read independently by two investigators and full papers retrieved where the inclusion criteria were met. Data were extracted by two teams of two investigators using a piloted protocol. The data were used to describe the development of the measures and their use against existing criteria. The methodological quality and measurement properties of the measures were assessed using standards proposed by the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) group.The search strategy yielded 653 papers, of which 417 were duplicates. Following analysis of the abstracts, 119 papers met the inclusion criteria. The majority of papers reported cross-sectional studies (n?=?117) with three of longitudinal design. Fifteen studies which had used the original version of the measures in their original language were included in the COSMIN analysis. The most frequently used measure was the CPQ. Reliability and construct validity appear to be adequate for all three measures. Children were not fully involved in item generation which may compromise their content validity. Internal consistency was measured using classic test theory with no evidence of modern psychometric techniques being used to test unidimensionality of the measures included in the COSMIN analysis.The three measures evaluated appear to be able to discriminate between groups. CPQ has been most widely tested and several versions are available. COHIP employed a rigorous development strategy but has been tested in fewer populations. C-OIDP is shorter and has been used successfully in epidemiological studies. Further testing using modern psychometric techniques such as item response theory is recommended. Future developments should also focus on the development of measures which can evaluate longitudinal change.
| S-EPMC4021173 | biostudies-other
Project description:OBJECTIVES:To examine quality of life (QOL) in nursing home (NH) residents with advanced dementia and identify correlates of QOL near the end of life. DESIGN:Cross-sectional data derived from NH records, interviews with residents' surrogate decision-makers, QOL ratings by NH caregivers, and assessment of residents' cognitive function. SETTING:Three NHs in Maryland. PARTICIPANTS:A cohort of NH residents with dementia (n=119) who were receiving hospice or palliative care or met hospice criteria for dementia and their surrogates. MEASUREMENTS:QOL based on the proxy-rated Alzheimer' Disease-Related Quality of Life (ADRQL) scale administered to NH staff and validated against a single-item surrogate-rated measure of QOL, the Severe Impairment Rating Scale, to measure cognitive function and dichotomous indicators of neuropsychiatric symptoms (behavior problems, mood disorders, psychosis, delusions). RESULTS:Total ADRQL scores, ranging from 12.4 to 95.1 out of 100, were normally distributed and positively correlated (P<.001) with surrogate-rated QOL. Multiple regression analysis of ADRQL scores showed that residents with higher cognitive function (P<.001, 95% confidence interval (CI)=0.97-1.65) and those receiving pain medication (P=.006, 95% CI=3.30-19.59) had higher QOL, whereas residents with behavior problems (P=.01, 95% CI=-11.60 to -1.30) had lower QOL. CONCLUSION:The ADRQL is a valid indicator of QOL in NH residents with advanced dementia. QOL in this population may be improved near the end of life using appropriate assessment and treatment of pain and effective management of behavior problems.
| S-EPMC3057956 | biostudies-literature
Project description:BackgroundChildren's oral health-related quality of life (COHQoL) measures are well known and widely used. However, rigorous systematic reviews of these measures and analyses of their quality are in absence.ObjectivesTo systematically review and quantitatively assess the quality of COHQoL measures through a scoping review.Data sourcesSystematic literature search of PubMed, CINAHL (Cumulative Index to Nursing and Allied Health Literature), EMBASE (Excerpta Medica database), HaPI (Health and Psychosocial Instruments), and DOSS (Dentistry and Oral Sciences Source).Study eligibilityThe measure's focus was COHQoL; the child age ranged from 5 to 14 years; the publication was either a research article or a systematic review and related to caries; and it was written in English or had an English abstract. Two authors independently selected the studies. Disagreements were reconciled by group discussions with a third author.AppraisalThe International Society for Quality of Life Research minimum standards for patient-reported outcome measures were used for quality appraisal.SynthesisDescriptive analysis.ResultsWe identified 18 measures. Their quality scores ranged from 9.5 to 15.0 on a scale of 16. The quality appeared to bear no relationship to the citation and use of these measures. However, elements of these measures might be more useful than others, depending on the age-specific use and primary quality concerns.LimitationsSome of the information on the minimum standards of the 18 measures cannot be found in the existing literature. Measures published without English abstract were not searched.ConclusionsThe quality of these measures is suboptimal. Researchers and practitioners in this field should exercise caution when choosing and using these measures. Efforts at improving the quality of the COHQoL measures, such as refining existing ones or developing new measures, are warranted.Knowledge transfer statementResearchers, clinician scientists, and clinicians can use the results of this study when deciding which oral health-related quality of life measure they wish to use in children.
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Project description:OBJECTIVES:Endometriosis and quality of life has been the subject of much research, however, there is little consensus on how best to evaluate quality of life in endometriosis, resulting in many and diverse scales being used. In our study, we aim to identify quality of life scales used in endometriosis, to review their strengths and weaknesses and to establish what would define an ideal scale in the evaluation of endometriosis-related quality of life. MATERIALS AND METHODS:A search of the MEDLINE and EMBASE databases was carried out for publications in English and French for the period from 1980 to February 2017, using the words 'endometriosis' and 'quality of life'. Publications were selected if they reported on quality of life in patients with endometriosis and specified use of a quality of life scale. A quantitative and a qualitative analysis of each scale was performed in order to establish the strengths and weaknesses for each scale (systematic registration number: PROSPERO 2014: CRD42014014210). RESULTS:A total of 1538 articles publications were initially identified. After exclusion of duplicates and application of inclusion criteria, 201 studies were selected for analysis. The SF-36, a generic HRQoL measure, was found to be the most frequently used scale, followed by the EHP-30, a measure specific to endometriosis. Both perform well, when compared with other scales, with scale weaknesses offset by strengths. EHP-5 and EQ-5D also showed to be of good quality. All four were the only scales to report on MCID studied in endometriosis patients. CONCLUSION:For clinical practice, routine evaluation of HRQOL in women with endometriosis is essential both for health-care providers and patients. Both SF-36 and EHP-30 perform better overall with regard to their strengths and weaknesses when compared to other scales.
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Project description:Lack of insight is a well-established phenomenon in schizophrenia, and has been associated with reduced rater-assessed functional performance but increased self-reported well-being in previous studies. The objective of this study was to examine factors that might influence insight (as assessed by the Insight and Treatment Attitudes Questionnaire [ITAQ] or PANSS item G12) and subjective quality-of-life (as assessed by Lehman QoL Interview [LQOLI]), using the large National Institute of Mental Health Clinical Antipsychotic Trials of Intervention Effectiveness (CATIE) dataset. Uncooperativeness was assessed by PANSS item G8 ("Uncooperativeness"). In the analysis, we found significant moderating effects for insight on the relationships of subjective life satisfaction assessment to symptom severity (as assessed by CGI-S score), objective everyday functioning (as assessed by rater-administered Heinrichs-Carpenter Quality of Life scale), clinically rated uncooperativeness (as assessed by PANSS G8), and discontinuation of treatment for all causes (all P > 0.05 for statistical interaction between insight and subject QoL). Patients with chronic schizophrenia who reported being "pleased" or "delighted" on LQOLI were found to have significantly lower neurocognitive reasoning performance and poorer insight (ITAQ total score). Our findings underscore the importance of reducing cognitive and insight impairments for both treatment compliance and improved functional outcomes.
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Project description:Time-restricted eating (TRE) reduces weight in humans, but its effects on quality of life have not been well characterized. By performing a secondary analysis of a randomized clinical trial, we examined the effects of TRE (12-week intervention, 8 h eating window) vs. non-TRE (unrestricted eating) on quality of life (QoL) measures. Twenty subjects with overweight and prolonged eating window (mean (SD): 15.4 h (0.9)) were randomized to either 12 weeks of TRE (8 h eating window: (n = 11)) or non-TRE (n = 9). QoL data were collected with the 36-item Short Form Survey (SF-36) pre- and post-intervention. Given a two-way ANOVA model and post-hoc t-test analysis, the TRE group improved limitations due to emotional health post-intervention: +97.0 (10.0)) vs. baseline: +66.7 (42.2) (p = 0.02) and perceived change in health over the last year end intervention: +68.2 (16.2) vs. baseline: +52.3 (23.6) (p = 0.001) relative to baseline. The TRE group improved limitations due to emotional health TRE: +97.0 (10.0) vs. non-TRE: +55.6 (44.1) (p = 0.05) and perceived change in health (TRE: +68.2 (16.2) vs. non-TRE: +44.4 (31.6) (p = 0.04) relative to the non-TRE group at post-intervention (p < 0.025). In conclusion, 12 weeks of TRE does not adversely affect QoL and may be associated with modest improvements in QoL relative to baseline and unrestricted eating; these findings support future studies examining TRE compliance and durability.
| S-EPMC8146708 | biostudies-literature
Project description:PURPOSE:To develop and evaluate a measurement scale for multi-domain assessment of the quality of life of family caregivers of persons with dementia (PWD) in Singapore, a multi-ethic society in South-East Asia where English is the lingua franca. METHODS:Items from the Singapore Caregiver Quality of Life Scale (SCQOLS), which was originally developed in the context of advanced cancers, were adopted as candidate items. Furthermore, a multi-disciplinary panel reviewed dementia-specific caregiver quality of life scales to identified items not covered in SCQOLS for inclusion as candidate items. A pilot study of 31 family caregivers of PWD was conducted to solicit inputs on candidate items; 102 family caregivers of PWD were surveyed for evaluation of the scale's measurement properties. RESULTS:Factor analysis confirmed a 5-domain structure of the 63 candidate items. The Root Mean Square Error of Approximation was 0.056 and Comparative Fit Index was 0.928. Convergent validity of the total and domain scores was demonstrated in terms of correlation with the Brief Assessment Scale for Caregivers and its sub-scales. The scores also showed an expected pattern of correlation with hours spent on caregiving per week. Known-group validity was demonstrated by differences in mean scores between functional staging groups. Cronbach's alpha of the total and domain scores ranged from 0.89 to 0.95. Test-retest reliability (intraclass correlation coefficient) ranged from 0.77 to 0.92. CONCLUSIONS:The Singapore Caregiver Quality of Life Scale - Dementia (SCQOLS-D) is a quality of life measurement scale for family caregivers of persons with dementia that is valid and reliable.
| S-EPMC7572987 | biostudies-literature
Project description:STUDY DESIGN: Systematic review. STUDY RATIONALE: According to current estimates, there are more than 1 million people living with a spinal cord injury (SCI) in the United States alone. Given the potentially devastating impact of SCI on health-related quality of life (QoL), we sought to gain an improved understanding of QoL outcomes in SCI. OBJECTIVE: To identify and describe common QoL outcomes measures in patients with SCI. METHODS: A systematic review of the English-language literature was undertaken for articles published from 1998 through December 2010. Electronic databases and reference lists of key articles were searched to identify measures or indices used to evaluate QoL outcomes in patients with SCI. The titles and abstracts of the SCI peer-reviewed literature were searched to determine which of these outcome measures were most commonly used to evaluate QoL in patients with SCI. RESULTS: We identified 27 outcome measures used to evaluate QoL in patients with SCI. In SCI literature, the six most commonly used objective outcome measures were the Short-form 36 (SF-36); Craig Handicap Assessment and Reporting Technique (CHART); Short-form 12 (SF-12); Sickness Impact Profile (SIP68); Reintegration to Normal Living Index (RNL); and Community Integration Questionnaire (CIQ). The six subjective measures that were most frequently used were the Satisfaction with Life Scale (SWLS); Quality of Life Index (QLI); Life Satisfaction Questionnaire (LISAT-9/-1); World Health Organization Quality of Life-BREF scale (WHOQOL-BREF); Perceived Quality of Life (PQOL); and global QoL. All six objective measures have been validated in an SCI population, and four of the six subjective measures have been similarly validated. Three of each of the objective and subjective measures have been reliability tested in a population with SCI. CONCLUSION: In addition to neurological and functional changes after SCI, QoL outcomes should be routinely assessed. Choice of appropriate QoL measure should be influenced by the study objectives and design, as well as the psychometric properties of the particular measure within the context of SCI.
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