Factor structure of the Schalock and Keith Quality of Life Questionnaire (QOL-Q): validation on Mexican and Spanish samples

Background The Quality of Life Questionnaire (QOL-Q) is used widely to evaluate the quality of life of persons with intellectual disability (ID). Its validity for use with Spanish-speaking cultures has been demonstrated for individuals with visual disabilities, but not for those with physical or intellectual disabilities. Such was the purpose of the present study. Method Two samples were administered the QOL-Q under standardized procedures. The first sample was composed of 209 Mexican participants with physical disabilities; the second was composed of 424 Spanish participants with ID. The hypothesis tested was: the applicability (i.e. etic properties) of the measure across countries and respondents would be demonstrated if reliability data and if factor composition were similar to the original measure. Cronbach's alpha was used to test reliability and exploratory factor analyses were used to test validity (i.e. factor structure). Results Data indicated that the reliability and factor structure was similar to that reported in the questionnaire's standardization manual and consistent with that reported in a number of Anglo-Saxon countries. Conclusion The present study offers additional support for the valid use of the QOL-Q with Spanish-speaking populations.     

Quality of life for people with intellectual disabilities in China: a cross-culture perspectives study

Background The concept of quality of life (QOL) is explained on the basis of traditional Chinese culture and contemporary social and cultural trends. Method The importance of internationally recognized QOL domains and indicators was determined for three respondent groups: consumers, parents of the consumers, and teachers and rehabilitation professionals working with the clients. Results Principal component analysis confirmed seven factors influencing QOL for people with intellectual disabilities (ID) in China. These seven components are conceptually equivalent to the eight domains found in the international QOL literature. Conclusion The concept of QOL has become one of the most sensitive issues in present Chinese society and peoples’ lives, and an important theoretical framework for the education and rehabilitation for people with ID in several ways: curriculum development, service delivery models, education and rehabilitation practices, and employment models.     

Spanish adaptation and validation of the Family Quality of Life Survey

Background Assessing the quality of life (QOL) for families that include a person with a disability have recently become a major emphasis in cross-cultural QOL studies. The present study examined the reliability and validity of the Family Quality of Life Survey (FQOL) on a Spanish sample. Method and results The sample comprised 385 families who were administered the FQOL in Cali, Columbia. The FQOL showed adequate temporal stability (r = 0.68 on Importance and r = 0.78 on Satisfaction) and excellent internal consistency: Cronbach's alpha of 0.96 for Importance and 0.95 for Satisfaction. The confirmatory factor analysis yielded high fit indices, thus confirming that the factor structure of the FQOL as adapted for Spanish people fitted the five-factor model proposed by the survey's authors. Conclusions The study provides a valid instrument for the research of the QOL of those families that have a child with a disability within Spanish-speaking community.     

The Life Satisfaction Matrix: an instrument and procedure for assessing the subjective quality of life of individuals with profound multiple disabilities

Background Assessing and measuring subjective quality of life (QOL) for individuals with profound multiple disabilities (PMD) remain amongst the most difficult challenges for theorists and practitioners in the field. The usual approaches using proxy reporting by familiar others have been demonstrated to be of questionable reliability and validity for persons with PMD. Method The author's continuing research into understanding the nature of subjective QOL of these individuals has led to the development and evaluating the Life Satisfaction Matrix (LSM), an instrument and procedure for assessing the subjective QOL of these individuals. Results Qualitative research that provides empirical evidence to support the assumptions underpinning, and face validity of, the LSM is described in this article. Conclusion Results of the study described herein demonstrate some potential to meet and overcome the above-mentioned challenges to assess and measure the subjective QOL of individuals with PMD.     

Caregiver's Concerns-Quality of Life Scale (CC-QoLS): Development and evaluation of psychometric properties

We have developed a Caregiver's Concerns-Quality of Life Scale (CC-QoLS) for adults with intellectual disabilities (ID) who exhibit aggressive behaviour. The CC-QoLS is a brief (8 items in each subscale, CC and QoL respectively) proxy measure completed by caregivers. This is a specific health related quality of life instrument (HRQoL) combined with measures of caregiver's concerns for use as an outcome measure to assess clinical and cost effectiveness of interventions for aggression in adults with ID. The CC-QoLS was found to have good face validity and very good test–retest reliability with an ICC of 0.81 for CC (range 0.46–0.83 across items) and 0.80 for QoL (range 0.65–0.81 across items). Similarly, the scale had good inter-rater reliability with an ICC of 0.67 for CC (range 0.31–0.63 across items) and 0.63 for QoL (range 0.31–0.65 across items). Internal consistency for each subscale was also good (Cronbach's alpha was 0.85 for CC and 0.80 for QoL; Split-half Spearman–Brown was 0.81 for CC and 0.70 for QoL). Furthermore, the scale showed good concurrent validity with measures of severity of aggressive behaviour, namely Modified Overt Aggression Scale (MOAS) (CC: r = 0.4; p ≤ 0.01 and QoL: r = −0.2; p ≤ 0.05) and Aberrant Behavior Checklist-Irritability subscale (ABC-I) (CC: r = 0.5; p ≤ 0.01 and QoL: r = −0.02; p ≤ 0.05) as well as Caregiver's Uplift and Burden Scale score (<0.05). We believe that the CC-QoLS is a user friendly, easy to complete, first-ever HRQoL measure for adults with ID and aggressive behaviour with very good psychometric properties.     

Individual planning: an exploration of the link between quality of plan and quality of life

Individual plans for people with intellectual disabilities were evaluated for quality and effectiveness in improving quality of life. Quality was assessed by rating whether goals were relevant, observable, age appropriate, necessary, timetabled, developmental, measurable, realistic, assigned to staff and improving at least one of O'Brien's five service accomplishments [ O'Brien & Tyne (1981) The principle of normalization: a foundation for effective services. London, Campaign for the Mentally Handicapped]. Effectiveness was assessed by examining quality of life outcomes for participants with and without individual plans rated as higher quality. No significant difference in outcomes associated with having a higher quality individual plan was found. Findings present a challenge to current expectations that presence and quality of individual plan goals are associated with improved outcomes. Written individual plan goals may not be directly correlated with actual practice, and further research is required to examine this.     

Quality of life in adults with an intellectual disability: the Evaluation of Quality of Life Instrument

Background The construct of quality of life (QoL) has been the focus of a great deal of recent research and has been operationalized in the assessment of the effectiveness of biomedical and rehabilitative interventions. Consequently, the effective measurement of QoL has become a relevant issue. QoL assessment should take account of both objective life conditions and reported satisfaction with those conditions, and should recognize that QoL has multiple domains. There is also evidence to suggest that it is useful to supplement such assessments with the evaluations of significant others within a multidimensional assessment perspective. Methods The current study describes a further stage of testing and refinement of the Evaluation of Quality of Life Instrument (EQLI), which was designed to elicit from staff of health and social care services assessments of the level of satisfaction experienced by adults with an intellectual disability. Specifically, the EQLI's internal consistency, and construct, convergent and discriminant validity were analysed. Results The EQLI appears to be a psychometrically valid measure for collecting data on the levels of satisfaction which, according to health and social services staff, might be experienced by individuals with an intellectual disability who attend residential institutions and community‐based day centres. The factor analyses supported a three‐factor structure for the EQLI and reliability estimates of scores on the three factors were in the moderate to high range. The data collected supported convergent and discriminant validity. Conclusions The results indicate that the EQLI is an effective measure for gaining staff perceptions of individuals who may be at risk of dissatisfaction with various QoL domains. The EQLI is as an instrument which, within a multidimensional assessment, could contribute to the identification of areas of user dissatisfaction with services.     

Psychometric evaluation of a questionnaire to measure the quality of life of people with profound multiple disabilities (QOL-PMD)

Because of a shortage of valid instruments to measure the QOL of people with profound multiple disabilities (PMD), the QOL-PMD was developed. In the present study, possibilities for item reduction as well as the psychometric properties of the questionnaire were examined. One hundred and forty-seven informants of people with PMD participated in the study. Fifty items were removed from the questionnaire on the basis of preset criteria. Internal consistency was good for the total questionnaire as well as for the subscales. Evidence of the construct validity of the questionnaire was found. Correspondence between the groups of informants was moderate. The results of this preliminary analysis of the psychometric properties of the QOL-PMD are encouraging, but further validation of the measure is warranted.     

儿童生存质量测定量表PedsQL3.0心脏病模块中文版的信度和效度分析

背景：心脏病患儿的生存质量受到越来越多的关注,但是国内缺少相关的研究报道。缺乏适合的量表是主要原因之一。目的：考察儿童生存质量量表PedsQL3.0心脏病模块中文版的信度和效度。方法：采用国际通用的量表翻译改造程序,将英文版的儿童生存质量测定量表PedsQL3.0心脏病模块翻译改造成中文。并将中文版量表运用于广州市3家三级甲等医院的310例门诊部或住院部的心脏病患儿及其家长。分析量表的可行性、内部一致性、内容效度、结构效度等。结果与结论：父母和患儿共发放480份问卷,回收462分,答卷的条目缺失率低于1%;除5~7岁患儿自评问卷的感知身体外貌维度的Cronbach′s α系数为0.35外,其他量表各个方面的Cronbach′sα系数为0.66~0.94;量表的各条目与其所属方面和领域之间相关较强,而与其他方面和领域相关较弱;证实性因子分析结果表明因子结构与量表的理论结构一致。结果提示PedsQL3.0心脏病模块中文版的信度和效度良好,可以应用于中国心脏病儿童生存质量的研究。     

Operationalizing quality of life for people with profound multiple disabilities: a Delphi study

Background In a recent study, we constructed an item pool that contains items on the quality of life (QOL) and related aspects of support of people with profound multiple disabilities (PMD). In the present study, a panel of experts assessed the content and the structure of this item pool in order to enhance its validity and usefulness. Method A two‐round Delphi study was set up. The panel consisted of 45 experts, of whom 12 were theory‐experts, 12 practice‐experts and 12 experience‐experts from Belgium (n = 12), Germany (n = 12), the Netherlands (n = 11) and the UK/Ireland (n = 10). Both quantitative and qualitative methods of analysis were applied to the data. Results The majority of the items were considered relevant for the QOL of people with PMD. In the first round, 91% of the items reached the 80% criterion of consensus. In the second round, 78.7% of the items reached the 85% criterion of consensus. There were no significant differences in opinion neither between types of experts nor between countries. Several items were reported as missing in the item pool and were added. Conclusions The results provide some evidence that the item pool is a valid operationalization of QOL of people with PMD and can be used in an instrument to measure the QOL of this target group.     

Validation of the Subjective and Objective Family Burden Interview (SOFBI/ECFOS) in primary caregivers to adults with intellectual disabilities living in the community

Background There is little information on the psychometric properties of instruments for assessing family care burden in adults with intellectual disabilities (ID). The aim of this study is therefore to analyse the usefulness of the ‘Subjective and Objective Family Burden Interview’ (SOFBI) in the assessment of principal caregivers in Spain. Methods The SOFBI was administered to 166 principal caregivers of adults with ID in a vocational centre. The psychometric analysis included: internal consistency, inter‐rater and test–retest reliability, construct validity, convergent validity with the World Health Organization's Disability Assessment Schedule II, and feasibility. Results The Cronbach's alpha was 0.88 for the overall interview and always above 0.7 in the quantitative subdomains. The Kappa coefficients for test–retest were between 0.5 and 0.8, whereas inter‐rater agreement was nearly perfect. Maximum‐likelihood factor analysis showed four well‐defined factors, which fitted the previously designed domains. Feasibility was also good. Conclusions The SOFBI is a multi‐domain, modular instrument which is feasible, reliable and valid for measuring the burden of family caregivers to adults with ID living in the community.     

Spanish Family Quality of Life Scales: Under and over 18 years old

Abstract

Background Researchers, professionals, and families have shown increasing concern with the family quality of life (FQoL) of people with intellectual disability (ID) and their families. The goals of this research were (a) to explore how Spanish families understand FQoL by developing 2 different measurement tools for families with a member with ID under and over 18 years old, and (b) to provide 2 diagnostic instruments that will be useful for designing action plans.

Method The study comprised 4 stages: (a) focus groups, (b) expert assessment, (c) pilot study, and (d) normalisation and standardisation. The data were collected in 5 regions in Spain, and 1,205 families with a member with ID took part in the normalisation and standardisation of the scales.

Results Both FQoL scales were consistent and have valid psychometric characteristics.

Conclusions The scales have a diagnostic purpose for use in designing action plans aimed at producing significant changes in families’ lives.     

Quality of life in patients with schizophrenia in five European countries: the EPSILON study

OBJECTIVE: To compare subjective quality of life (QOL) and objective QOL indicators in patients with schizophrenia from five European sites: Amsterdam, Copenhagen, London, Santander and Verona. METHOD: A representative sample of 404 patients with schizophrenia, in contact with mental health services, was randomly selected and evaluated with the Lancashire Quality of Life Profile (EU). RESULTS: The level of satisfaction in certain domains, religion, family and social relations appears to be associated with local style of living and culture while work, finances, and safety were more independent from local variations. In addition to the severity of symptoms, frequency of contacts with family, friendship and age appear as predictors of QOL, all of them influenced by the characteristics of the surroundings. CONCLUSION: The centres participating in the study presented differences in subjective measures of QOL, objective indicators and also in service provision and styles of living.     

Quality of life in schizophrenia measured by the MOS SF-36 and the Lancashire Quality of Life Profile: a comparison

OBJECTIVE: To compare two Quality of Life (QoL) instruments on reliability, feasibility and conceptual overlap in a group of schizophrenic out-patients. METHOD: The Lancashire Quality of Life Profile (LQoLP) and the MOS SF-36 were used to assess the QoL of 143 schizophrenic out-patients. RESULTS: Feasibility and reliability for both instruments were satisfying. Second order factor analysis on 10 LQoLP and eight MOS SF-36 scales resulted in three factors: one health related QoL factor and two general QoL factors; an internal and an external factor. CONCLUSION: QoL measures in schizophrenia studies are not exchangeable. Validity of a specific QoL instrument depends upon the purpose of the study. The LQoLP allows suggestions for specific improvements in mental health care for long-term psychiatric patients. The SF-36 is a good choice when comparison with other patient groups on health related QoL is relevant.     

The maintenance effect of cognitive-behavioural treatment groups for the Chinese parents of children with intellectual disabilities in Melbourne, Australia: a 6-month follow-up study

Background Caring for a child with intellectual disability can be stressful. No data on the longer‐term effects of cognitive–behavioural treatment (CBT) on parents from a Chinese‐speaking background who have children with intellectual disabilities are available in the literature. This study attempted to fill this research gap by examining the maintenance effect of CBT among the Chinese parents of such children in Melbourne, Australia. Method Thirty‐nine participants took part in our CBT groups and attended follow‐up meetings. A questionnaire comprising four instruments, the Parenting Stress Index (PS) – Parent Domain, General Health Questionnaire‐12 (GHQ‐12), Abbreviated Quality of Life Enjoyment and Satisfaction Questionnaire (Q‐LES‐Q‐18) and Dysfunctional Attitude Scale (DAS), was administered to the participants at the pre‐ and post‐test stage and at the 6‐month follow‐up. Results One‐way repeated‐measures analyses of variance revealed significant time and group effects in the PS (F_2,27 = 16.93, P < 0.001), Q‐LES‐Q‐18 (F_2,27 = 15.98, P < 0.001), GHQ‐12 (F_2,27 = 81.93, P < 0.001) and DAS (F_2,27 = 15.50, P < 0.001) scores at the three measurement times. The participants continued to maintain significant improvements in mental health and quality of life and declines in the severity of parenting stress and dysfunctional attitudes at the 6‐month follow‐up. Effect size analyses revealed mostly large differences in the foregoing measurements (Cohen's d = 0.76–2.18) between the pre‐test and 6‐month follow‐up. Employing a cut‐off score of 3/4 in the GHQ‐12 to identify at‐risk and not‐at‐risk cases, approximately 90.5% of the participants could be classified as not‐at‐risk at the follow‐up. Lastly, regression analyses showed that changes in DAS scores significantly predicted changes in the GHQ‐12 and Q‐LES‐Q‐18 scores at the follow‐up. Conclusions This study provides preliminary evidence of the 6‐month maintenance effect of CBT groups for the Melbourne‐resident Chinese parents of children with intellectual disabilities.     

Patient-based assessments of quality of life in newly diagnosed epilepsy patients: validation of the NEWQOL

PURPOSE: In epilepsy, patient-based assessments are increasingly used as outcome measures in clinical trials of novel therapies alongside the traditional clinical measures of efficacy. The objective of this study was to validate psychometrically a quality of life (QOL) measure developed for use with recently diagnosed epilepsy patients. METHODS: The NEWQOL (Quality of Life in Newly Diagnosed Epilepsy Instrument) is a 93-item self-administered battery designed to assess QOL in patients with new-onset epilepsy. NEWQOL consists of eight multi-item scales (13 subscales) measuring several health parameters: Anxiety, Depression, Social Activities, Symptoms, Locus of Control/ Mastery, Neuropsychological Problems (includes the following subscales: Fatigue, Memory, Concentration, Motor Skills, and Reading), Social Stigma, Worry, Work Limitations, and several single-item measures (General Health, Number of Seizures, Social Limitations, Social Support, Self Concept, Ambition Limitations, Health Transition, and General Limitations). The NEWQOL was collected at baseline and 1 week post-baseline from 108 patients in the U.K. and U.S. RESULTS: All of the multi-item scales had high item discriminant validity, good test-retest reliability, and acceptable levels of internal consistency reliability; all but the Reading and Stigma subscales had negligible floor and ceiling effects. General linear models were used to examine the known groups validity of NEWQOL. Significant differences were observed in the Worry, Symptoms, Summary Neuropsychological Scales, and all Neuropsychological subscales (Memory, Fatigue, Concentration, Motor Skills, and Reading), indicating poorer functioning in the more frequent or severe seizure groups. CONCLUSIONS: Results from this study offer supportive evidence that NEWQOL has good validity and reliability and can discriminate between patient groups, particularly in relation to symptoms and psychological problems. We conclude that NEWQOL represents a useful measure for future studies in this patient population.     

Quality of life measures for depressed and non-depressed Chinese older people

AIM: To compare the perception of quality of life (QoL) between depressed and non-depressed Chinese older people in Hong Kong and examined the factors that influence this perception. METHODS: A cross-sectional study was conducted with a convenience sample of 80 older people with a diagnosis of depression and 179 non-depressed controls. RESULTS: The depressed group had a lower rating in perceived QoL in all aspects than the non-depressed group. Level of depression and functional abilities were predictors of quality of life ratings for the both groups and activities of daily living was the predictor of quality of life for the depressed group only. The study identified the subjective perception of QoL amongst depressed older people is significantly lower than that amongst non-depressed older people. Depression affects the bio-psychosocial status of Chinese older people. This study provides insight for healthcare professionals in planning innovative services to meet their health needs.