Mick Power

Development of the World Health Organization WHOQOL-Bref quality of life assessment

Background. The paper reports on the development of the WHOQOL-BREF, an abbreviated version of the WHOQOL-100 quality of life assessment. Method. The WHOQOL-BREF was derived from data collected using the WHOQOL-100. It produces scores for four domains related to quality of life: physical health, psychological, social relationships and environment. It also includes one facet on overall quality of life and general health. Results. Domain scores produced by the WHOQOL-BREF correlate highly (0.89 or above) with WHOQOL-100 domain scores (calculated on a four domain structure). WHOQOL-BREF domain scores demonstrated good discriminant validity, content validity, internal consistency and test-retest reliability. Conclusion. These data suggest that the WHOQOL-BREF provides a valid and reliable alternative to the assessment of domain profiles using the WHOQOL-100. It is envisaged that the WHOQOL-BREF will be most useful in studies that require a brief assessment of quality of life, for example, in large epidemiological studies and clinical trials where quality of life is of interest. In addition, the WHOQOL-BREF may be of use to health professionals in the assessment and evaluation of treatment efficacy. [References: 9]

The World Health Organization Quality of Life assessment (WHOQOL) : Development and general psychometric properties

This paper reports on the field testing, empirical derivation and psychometric properties of the World Health Organisation Quality of Life assessment (the WHOQOL). The steps are presented from the development of the initial pilot version of the instrument to the field trial version, the so-called WHOQOL-100. The instrument has been developed collaboratively in a number of centres in diverse cultural settings over several years; data are presented on the performance of the instrument in 15 different settings worldwide.

KIDSCREEN-52 quality-of-life measure for children and adolescents

This study describes the development and reports the first psychometric results of the European KIDSCREEN-52 generic health-related quality-of-life questionnaire for children and adolescents. The KIDSCREEN-52, including ten dimensions, was applied in a European survey involving 12 countries (i.e., Austria, Switzerland, Czech Republic, Germany, Greece, Spain, France, Hungary, The Netherlands, Poland, Sweden and the UK) and 22,110 children and adolescents aged between 8 and 18 years of age. Questionnaire development included a literature search, expert consultation, and focus group discussions with children and adolescents. After definition of dimensions and collection of items, a translation process following international translation guidelines, cognitive interviews and a pilot test were performed. Analysis regarding psychometric properties showed Cronbach-α ranged from 0.77 to 0.89. Correlation coefficients between KINDLR and KIDSCREEN-52 dimensions were high for those assessing similar constructs (r = 0.51–0.68). All KIDSCREEN-52 dimensions showed a gradient according to socioeconomic status and most dimensions showed a gradient according to psychosomatic health complaints. The first results demonstrate that the KIDSCREEN-52 questionnaire is a promising cross-cultural measure of health-related quality-of-life assessment for children and adolescents in Europe.

THE KIDSCREEN-52 QUALITY OF LIFE MEASURE FOR CHILDREN AND ADOLESCENTS: PSYCHOMETRIC RESULTS FROM A CROSS-CULTURAL SURVEY IN 13 EUROPEAN COUNTRIES

OBJECTIVE This study assesses the reliability and validity of the European KIDSCREEN-52 generic health-related quality of life (HRQoL) questionnaire for children and adolescents. RESEARCH DESIGN The KIDSCREEN-52, which measures HRQoL in 10 dimensions, was administered to a representative sample of 22,827 children and adolescents (8 to 18 years) in 13 European countries. Psychometric properties were assessed using the Classical Test Theory approach, Rasch analysis, and structural equation modeling (SEM). A priori expected associations between KIDSCREEN scales and sociodemographic and health-related factors were examined. Test-retest reliability was assessed in 10 countries. RESULTS For the overall sample, Cronbachs alpha values ranged from 0.77 to 0.89. Scaling success (Multitrait Analysis Program) was >97.8% for all dimensions and Rasch analysis item fit (INFITmsq) ranged from 0.80 to 1.27. The intraclass correlation coefficients ranged from 0.56 to 0.77. No sizeable differential item functioning (DIF) was found by age, sex or health status. Four items showed DIF across countries. The specified SEM fitted the data well (root mean square error of approximation: 0.06, comparative fit index: 0.98). Correlation coefficients between Pediatric Quality of Life Inventory, Child Health and Illness Profile-Adolescent Edition, and Youth Quality of Life Instrument scales and KIDSCREEN dimensions assessing similar constructs were moderate for those (r = 0.44 to 0.61). Statistically significant differences between children with and without physical and mental health problems (Children with Special Health Care Needs screener: d = 0.17 to 0.42, Strengths and Difficulties Questionnaire: d = 0.32 to 0.72) were found in all dimensions. All dimensions showed a gradient according to socioeconomic status. CONCLUSIONS The KIDSCREEN-52 questionnaire has acceptable levels of reliability and validity. Further work is needed to assess longitudinal validity and sensitivity to change.

Development of the WHOQOL-Old module

This paper describes the development of an add-on module for the WHOQOL measures of quality of life (QoL) for use with older adults. The add-on module, known as the WHOQOL-OLD, was derived following standard WHOQOL methodology. In the pilot phase of the study, 22 centres from around the world carried out focus groups with older adults, with carers, and with professionals working with older adults in order to identify gaps in the coverage of the WHOQOL-100 that were relevant for QoL in older adults. Items generated from the focus groups were then tested in over 7400 respondents from the centres, with items being tested and reduced using both classical and modern psychometric methods. These analyses indicated a further gap in the coverage of the items, so further items were generated that specifically assessed intimate relations in older adults. A field trial study was then carried out in a further approximately 5500 respondents, again with the use of both classical and modern psychometric methods. The outcome of this second round of data collection and analysis is a 24-item 6-facet module which can be used in conjunction with the WHOQOL-BREF or the WHOQOL-100 for assessment of QoL in older adults.

Childhood trauma, dissociation and self-harming behaviour: A pilot study

OBJECTIVE Childhood trauma is known to be an important antecedent in those who engage in deliberate self-harm (DSH). We aimed to explore the mediating mechanisms between childhood trauma and subsequent DSH in a sample of women detained in a high secure setting. METHOD From a previous incidence study into DSH, we subdivided a group of 50 women as follows: non-harmers (N = 13), infrequent harmers (N = 22) and frequent harmers (N = 15). These three groups were then compared on several measures believed to be associated with DSH. RESULTS The frequency of DSH was related to low self-esteem, increased dissociation, anger (both inwardly and outwardly directed), impulsivity, and a history of sexual and physical abuse. When these variables were entered into a path analytic model exploring the relationship between childhood trauma and subsequent DSH, two paths emerged: one major path which linked childhood sexual abuse to DSH via increased dissociation and another, more minor association, linking childhood sexual abuse via reduced self-esteem. CONCLUSION This study shows a strong association between high levels of dissociation and an increased frequency of self-harming behaviour. This association is theoretically plausible and has therapeutic implications.

Development and pilot-testing of a health-related quality of life chronic generic module for children and adolescents with chronic health conditions: a European perspective.

Health-related quality of life (HRQOL) assessment in children and adolescents with chronic health conditions is increasingly considered as a relevant topic. The aim of the EU-funded DISABKIDS project is to develop, test, and implement European instruments for the assessment of HRQOL of children and adolescents with disabilities and their families. The current paper describes the development and pilot testing of a chronic generic HRQOL measure. Using literature searches, expert consulting and focus groups with children/adolescents and their families, items of the instruments were developed and translated into the respective languages. A pilot test with 360 children and adolescents was conducted. Children and adolescents (8–12, 13–16 years) with different chronic health conditions (asthma, epilepsy, diabetes, arthritis, atopic dermatitis, cerebral palsy, and cystic fibrosis) as well as their families were included. Data were analysed according to predefined psychometric and content criteria. Psychometric analyses resulted in a 56-item chronic generic HRQOL questionnaire with six domains (‘Medication’, ‘Physical’, ‘Emotion’, ‘Independence’, ‘Social Inclusion’, ‘Social Exclusion’) with acceptable internal consistency.

Effects of exercise on cognitive and motor function in chronic fatigue syndrome and depression

OBJECTIVES Patients with chronic fatigue syndrome complain of physical and mental fatigue that is worsened by exertion. It was predicted that the cognitive and motor responses to vigorous exercise in patients with chronic fatigue syndrome would differ from those in depressed and healthy controls. METHODS Ten patients with chronic fatigue syndrome, 10 with depressive illness, and 10 healthy controls completed cognitive and muscle strength testing before and after a treadmill exercise test. Measures of cardiovascular functioning and perceived effort, fatigue, and mood were taken during each stage of testing. RESULTS Depressed patients performed worst on cognitive tests at baseline. During the treadmill test, patients with chronic fatigue syndrome had higher ratings of perceived effort and fatigue than both control groups, whereas patients with depression reported lower mood. After exertion, patients with chronic fatigue syndrome showed a greater decrease than healthy controls on everyday tests of focused (p=0.02) and sustained (p=0.001) attention, as well as greater deterioration than depressed patients on the focused attention task (p=0.03). No between group differences were found in cardiovascular or symptom measures taken during the cognitive testing. CONCLUSIONS Patients with chronic fatigue syndrome show a specific sensitivity to the effects of exertion on effortful cognitive functioning. This occurs despite subjective and objective evidence of effort allocation in chronic fatigue syndrome, suggesting that patients have reduced working memory capacity, or a greater demand to monitor cognitive processes, or both. Further insight into the pathophysiology of the core complaints in chronic fatigue syndrome is likely to be realised by studying the effects of exercise on other aspects of everyday functioning.

THE TREATMENT OF DELIBERATE SELF-HARM IN BORDERLINE PERSONALITY DISORDER USING DIALECTICAL BEHAVIOUR THERAPY: A PILOT STUDY IN A HIGH SECURITY HOSPITAL

Deliberate self-harm (DSH) presents a significant health problem, especially as treatments have not been particularly successful in reducing repetition. Dialectical behaviour therapy (DBT; Linehan, 1993) is one approach that has reported some success in reducing self-harm rates in borderline personality disorder patients, who self-harm frequently, though it remains largely untested outside its original setting. The present study aimed to assess the effectiveness of DBT in self-harming women in an institutional setting in the United Kingdom where self-harm is common. Female patients at Rampton Hospital who were displaying self-harming behaviour and met criteria for borderline personality disorder ( N = 10) participated in the full one-year treatment package of DBT. Patients were assessed on self-harm rates and on a number of psychological variables, pre-, during- and post-therapy, including a 6-month follow-up. There was a significant reduction in DSH during therapy, which was maintained at 6-month follow-up. This was paralleled by a reduction in dissociative experiences and an increase in survival and coping beliefs, alongside improvements in depression, suicide ideation, and impulsiveness. The findings are preliminary but the results suggest that DBT might provide an effective treatment for severe self-harm in institutional settings, and also highlight some of the psychological mechanisms that might mediate these improvements in self-harming behaviour.

Expert consensus in the development of a European health-related quality of life measure for children and adolescents: a Delphi study.

Aim: To determine the level of consensus among experts regarding content, structure and sources of content for a new European measure of health‐related quality of life in children and adolescents. Methods: A three‐round Delphi questionnaire was sent by e‐mail to 24 experts in quality of life measurement in 9 European countries. Consensus was considered reached when ≫90% of experts either agreed or disagreed with a given statement, or where median scores were over 6 on a scale of 1–10, and score dispersion was within predefined limits. Results: Completed questionnaires were received from 20 panellists in each round. It was agreed that the new instrument should be a multidimensional, profile measure with 30–49 items covering 5–8 dimensions, which should take no more than 10–15 min to complete. Agreement was also reached on 8 specific dimensions to include in the questionnaire (psychological well‐being, self‐esteem, body image, cognitive functioning, mobility, energy/vitality, social relations, family/home function). Consensus was against the use of individualized questionnaires. Focus groups with children, parents and workers in the field, literature and instrument reviews were considered appropriate sources for content.