How can we best assess the quality of life of people with dementia? The Bath Assessment of Subjective Quality of Life in Dementia (BASQID)

Purpose of the Study - The study aim was to develop a measure of self-reported QoL for people with mild to moderate dementia based on their views - the Bath Assessment of Subjective Quality of Life in Dementia (BASQID). Design and Methods - The measure was developed through multiple stages. Two field tests of the measure (n=60 & n=150) enrolled people with dementia from a memory clinic and the data were used to analyse the psychometric properties of the scale. Nested within this was a longitudinal investigation of 36 Alzheimer’s disease patients prescribed with acetylcholinesterase inhibitors. Results - The BASQID contains 14 items assessing a range of QoL issues. Results show that the BASQID satisfies the criteria of a valid, reliable, and acceptable assessment of subjective QoL. Scores were responsive to changes in QoL, over 3-months. Low association between the BASQID and Mini Mental State Examination indicates that cognitive function may influence QoL, but is an indirect measure of the QoL experienced during dementia. Implications – The BASQID provides a means of better understanding the experiences, perceptions, and beliefs of people with dementia. It does this through acknowledgement of the many influences on QoL, over and above health status. The BASQID can be used alongside objective assessments of dementia to provide a complete appraisal of a person’s QoL

Adjusting for cross-cultural differences in computer-adaptive tests of quality of life.

PURPOSE: Previous studies using the WHOQOL measures have demonstrated that the relationship between individual items and the underlying quality of life (QoL) construct may differ between cultures. If unaccounted for, these differing relationships can lead to measurement bias which, in turn, can undermine the reliability of results. METHODS: We used item response theory (IRT) to assess differential item functioning (DIF) in WHOQOL data from diverse language versions collected in UK, Zimbabwe, Russia, and India (total N = 1332). Data were fitted to the partial credit 'Rasch' model. We used four item banks previously derived from the WHOQOL-100 measure, which provided excellent measurement for physical, psychological, social, and environmental quality of life domains (40 items overall). Cross-cultural differential item functioning was assessed using analysis of variance for item residuals and post hoc Tukey tests. Simulated computer-adaptive tests (CATs) were conducted to assess the efficiency and precision of the four items banks. RESULTS: Splitting item parameters by DIF results in four linked item banks without DIF or other breaches of IRT model assumptions. Simulated CATs were more precise and efficient than longer paper-based alternatives. DISCUSSION: Assessing differential item functioning using item response theory can identify measurement invariance between cultures which, if uncontrolled, may undermine accurate comparisons in computer-adaptive testing assessments of QoL. We demonstrate how compensating for DIF using item anchoring allowed data from all four countries to be compared on a common metric, thus facilitating assessments which were both sensitive to cultural nuance and comparable between countries

Development of a measure for patients preparing to start dialysis and their partners: The Starting Dialysis Questionnaire (SDQ)

BackgroundThe transition onto dialysis is a stressful time that affects both patients and their partners. Research suggests that psychological and interpersonal characteristics within the couple are related to how well they adapt to dialysis. The aim of this multi-phase, mixed methods study was to develop a measure, the Starting Dialysis Questionnaire (SDQ), that is applicable to both patients and their partners and assesses their own thoughts and feelings about these constructs.MethodsData from semi-structured interviews with patients and their partners (n = 22 couples) were analysed using theoretical thematic analysis to identify and define constructs related to quality of life (QOL). Next, items addressing these constructs were derived from the interviews. Then, cognitive interviews were conducted with patients with chronic kidney disease and their partners (n = 5 couples) to assess the face validity and comprehensibility of the items. Lastly, preliminary psychometric properties were evaluated in a sample of patients preparing to start dialysis and their partners (n = 83 couples).ResultsThree themes related to QOL were identified, namely dialysis expectations, accepting dialysis and dyadic relationship characteristics. The cognitive interviews refined the SDQ and established its face validity. Psychometric assessments indicated that overall the items performed well and did not show significant floor or ceiling effects. Good internal consistency was found within the three domains, and items correlated within the domains.ConclusionsThe SDQ is a measure (34 items) that assesses key psychological and interpersonal factors in patients and their partners as they start dialysis. It shows good preliminary psychometric properties; however, a large-scale field trial is needed to establish its validity. Once validated, it could offer a clinically useful tool to assist clinicians in preparing patients and partners for dialysis

Utility of WHOQOL-BREF in measuring quality of life in Sickle Cell Disease

BACKGROUND: Sickle cell disease is the commonest genetic disorder in Jamaica and most likely exerts numerous effects on quality of life (QOL) of those afflicted with it. The WHOQOL-Bref, which is a commonly utilized generic measure of quality of life, has never previously been utilized in this population. We have sought to study its utility in this disease population. METHODS: 491 patients with sickle cell disease were administered the questionnaire including demographics, WHOQOL-Bref, Short Form-36 (SF-36), Flanagan's quality of life scale (QOLS) and measures of disease severity at their routine health maintenance visits to the sickle cell unit. Internal consistency reliabilities, construct validity and "known groups" validity of the WHOQOL-Bref, and its domains, were examined; and then compared to those of the other instruments. RESULTS: All three instruments had good internal consistency, ranging from 0.70 to 0.93 for the WHOQOL-Bref (except the 'social relationships' domain), 0.86-0.93 for the SF-36 and 0.88 for the QOLS. None of the instruments showed any marked floor or ceiling effects except the SF-36 'physical health' and 'role limitations' domains. The WHOQOL-Bref scale also had moderate concurrent validity and showed strong "known groups" validity. CONCLUSION: This study has shown good psychometric properties of the WHOQOL-Bref instrument in determining QOL of those with sickle cell disease. Its utility in this regard is comparable to that of the SF-36 and QOLS.Originally published at http://www.biomedcentral.com/content/pdf/1477-7525-7-75.pd

The effectiveness and satisfaction of web-based physiotherapy in people with spinal cord injury: a pilot randomised controlled trial

Study Design: Pilot randomised controlled trial. Objectives: The aims of this study were to evaluate the effectiveness and participant satisfaction of web-based physiotherapy for people with Spinal Cord Injury (SCI). Setting: Community patients of a national spinal injury unit in a university teaching hospital, Scotland, UK. Methods: Twenty-four participants were recruited and randomised to receive eight weeks of web-based physiotherapy (intervention), twice per week, or usual care (control). Individual exercise programmes were prescribed based upon participant’s abilities. The intervention was delivered via a website (www.webbasedphysio.com) and monitored and progressed remotely by the physiotherapist. Results: Participants logged on to the website an average of 1.4±0.8 times per week. Between-group differences, although not significant were more pronounced for the 6 minute walk test. Participants were positive about using web-based physiotherapy and stated they would be happy to use it again and would recommend it to others. Overall it was rated as either good or excellent. Conclusions: Web-based physiotherapy was feasible and acceptable for people with SCI. Participants achieved good compliance with the intervention, rated the programme highly and beneficial for health and well-being at various states post injury. The results of this study warrant further work with a more homogenous sample

Cultural differences in postnatal quality of life among German-speaking women - a prospective survey in two countries.

Assessment of quality of life after childbirth is an important health-outcome measurement for new mothers and is of special interest in midwifery. The Mother-Generated Index (MGI) is a validated instrument to assess postnatal quality of life. The tool has not been applied for making a cross-cultural comparison before. This study investigated (a) responses to the MGI in German-speaking women in Germany and Switzerland; and (b) associations between MGI scores on the one hand and maternity and midwifery care on the other

Validação brasileira do Instrumento de Qualidade de Vida/espiritualidade, religião e crenças pessoais

OBJETIVO: Analisar propriedades psicométricas do Instrumento de Qualidade de Vida da Organização Mundial da Saúde - Módulo Espiritualidade, Religiosidade e Crenças Pessoais (WHOQOL-SRPB). MÉTODOS: O WHOQOL-SRPB, a Escala de Coping Religioso/Espiritual Abreviada (CRE-Breve), o WHOQOL-Breve e o BDI foram consecutivamente aplicados em amostra de conveniência de 404 pacientes e funcionários de hospital universitário e funcionários de universidade, em Porto Alegre, RS, entre 2006 e 2009. A amostra foi estratificada por sexo, idade, estado de saúde e religião/crença. O reteste dos dois primeiros instrumentos foi realizado com 54 participantes. Análises fatoriais exploratórias do WHOQOL-SRPB pelo método dos componentes principais foram realizadas sem delimitar o número de fatores, solicitando oito fatores e em conjunto com os itens do WHOQOL-Breve. RESULTADOS: O WHOQOL-SRPB em português brasileiro (Domínio SRPB-Geral) apresentou validade de construto, com validade discriminativa entre crentes de não-crentes (t = 7,40; p = 0,0001); validade relacionada ao critério concorrente, discriminando deprimidos de não-deprimidos (t = 5,03; p = 0,0001); validade convergente com o WHOQOL-Breve (com físico r = 0,18; psicológico r = 0,46; social r = 0,35; ambiental r = 0,29; global r = 0,23; p = 0,0001) e com o Domínio SRPB do WHOQOL-100 (r = 0,78; p = 0,0001); e validade convergente/discriminante com a Escala CRE-Breve (com CREpositivo r = 0,64; p = 0,0001/CREnegativo r = -0,03; p = 0,554). Observou-se excelente fidedignidade teste-reteste (t = 0,74; p = 0,463) e consistência interna (α = 0,96; correlação intrafatorial 0,87 > r > 0,60, p = 0,0001). As análises fatoriais exploratórias realizadas corroboraram a estrutura de oito fatores do estudo multicêntrico do WHOQOL-SRPB. CONCLUSÕES: O WHOQOL-SRPB em português brasileiro apresentou boas qualidades psicométricas e uso válido e fidedigno para uso no Brasil. Sugerem-se novos estudos com populações específicas, como diferentes religiões, grupos culturais e/ou doenças.OBJETIVO: Analizar propiedades psicométricas del Instrumento de Calidad de Vida de la OMS - Módulo Espiritualidad, Religiosidad y Creencias Personales (WHOQOL-SRPB). MÉTODOS: El WHOQOL-SRPB, la Escala de Coping Religioso/Espiritual Abreviada (CRE-Breve), el WHOQOL-Breve y el BDI fueron consecutivamente aplicados en muestra de conveniencia de 404 pacientes y funcionarios de hospital universitario y funcionarios de universidad, en Porto Alegre, Sur de Brasil, entre 2006 y 2009. La muestra fue estratificada por sexo, edad, estado de salud y religión/creencia. La reevaluación de los dos primeros instrumentos fue realizada por 54 participantes. Análisis factoriales exploratorias del WHOQOL-SRPB por el método de los componentes principales fueron realizadas, sin delimitar el número de factores, solicitando ocho factores y en conjunto con los itens del WHOQOL-Breve. RESULTADOS: El WHOQOL-SRPB en portugués-brasileño (Dominio SRPB-General) presentó validez de constructo, con validez discriminativa entre creyentes de no creyentes (t=7,40; p=0,0001); validez relacionada con el criterio concurrente, discriminando deprimidos de no deprimidos (t=5,03; p=0,0001); validez convergente con el WHOQOL-Breve (con físico r=0,18; psicológico r=0,46; social r=0,35; ambiental r=0,29; global r=0,23; p=0,0001) y con el Dominio-SRPB del WHOQOL-100 (r=0,78; p=0,0001); y validez convergente/discriminante con la Escala CRE-Breve (con CRE positivo r=0,64; p=0,0001/CRE negativo r=-0,03; p=0,554). Se observó excelente fidedignidad test-retest (t=0,74; p=0,463) y consistencia interna (α=0,96; correlación intrafactorial 0,87>r>0,60, p=0,0001). Los análisis factoriales exploratorios realizados corroboran la estructura de ocho factores de estudio multicéntrico del WHOQOL-SRPB. CONCLUSIONES: El WHOQOL-SRPB en portugués-brasileño presentó buenas cualidades psicométricas, siendo válido y fidedigno para uso en Brasil. Se sugieren nuevos estudios con poblaciones específicas, como diferentes religiones, grupos culturales y/o enfermedades.OBJECTIVE: To analyze the psychometric properties of the World Health Organization's Quality of Life Instrument - Spirituality, Religion and Personal Beliefs module (WHOQOL-SRPB). METHODS: The WHOQOL-SRPB, the Brief Spiritual/Religious Coping Scale (Brief-SRCOPE Scale), the WHOQOL-BREF and the Beck Depression Inventory (BDI) were consecutively applied in a convenience sample of 404 patients and workers of a university hospital and workers of a university, in the city of Porto Alegre, Southern Brazil, between 2006 and 2009. The sample was stratified by sex, age, health status and religion/belief. The retest of the two first instruments was conducted with 54 participants. Exploratory factorial analyses of the WHOQOL-SRPB with the method of main components were performed, without limiting the number of factors, and requiring eight factors concomitantly with the WHOQOL-BREF items. RESULTS: The Brazilian Portuguese version of the WHOQOL-SRPB (General SRPB-Domain) showed construct validity, with a discriminatory validity between believers and non-believers (t = 7.40; p = 0.0001); concurrent criterion-related validity, distinguishing depressed individuals from non-depressed ones (t = 5.03; p = 0.0001); convergent validity with the WHOQOL-BREF (physical r = 0.18; psychological r = 0.46; social r = 0.35; environmental r = 0.29; global r = 0.23; p = 0.0001) and with the SRPB-Domain of the WHOQOL-100 (r = 0.78; p = 0.0001); and convergent/discriminatory validity with the brief SRCOPE Scale (with positive SRCOPE r = 0.64; p = 0.0001/negative SRCOPE r = -0.03; p = 0.554). Excellent test-retest reliability (t = 0.74; p = 0.463) and internal consistency (α = 0.96; intrafactorial correlation 0.87 > r > 0.60; p = 0.0001) were observed. The exploratory factorial analyses performed corroborated the eight-factor structure of the WHOQOL-SRPB multicenter study. CONCLUSIONS: The Brazilian Portuguese version of the WHOQOL-SRPB showed good psychometric qualities and use valid and reliable in Brazil. It is suggested that new studies be conducted with specific populations, such as different religions, cultural groups and/or diseases

Psychometric properties of the Iranian interview-administered version of the World Health Organization's Quality of Life Questionnaire (WHOQOL-BREF): A population-based study

<p>Abstract</p> <p>Background</p> <p>The objective of the current study was to translate and validate the Iranian version of the WHOQOL-BREF.</p> <p>Methods</p> <p>A forward-backward translation procedure was followed to develop the Iranian version of the questionnaire. A stratified random sample of individuals aged 18 and over completed the questionnaire in Tehran, Iran. Psychometric properties of the instrument including reliability (internal consistency, and test-retest analysis), validity (known groups' comparison and convergent validity), and items' correlation with their hypothesized domains were assessed.</p> <p>Results</p> <p>In all 1164 individuals entered into the study. The mean age of the participants was 36.6 (SD = 13.2) years, and the mean years of their formal education was 10.7 (SD = 4.4). In general the questionnaire received well and all domains met the minimum reliability standards (Cronbach's alpha and intra-class correlation > 0.7), except for social relationships (alpha = 0.55). Performing known groups' comparison analysis, the results indicated that the questionnaire discriminated well between subgroups of the study samples differing in their health status. Since the WHOQOL-BREF demonstrated statistically significant correlation with the Iranian version of the SF-36 as expected, the convergent validity of the questionnaire was found to be desirable. Correlation matrix also showed satisfactory results in all domains except for social relationships.</p> <p>Conclusion</p> <p>This study has provided some preliminary evidence of the reliability and validity of the WHOQOL-BREF to be used in Iran, though further research is required to challenge the problems of reliability in one of the dimensions and the instrument's factor structure.</p