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.

Is quality of life poorer for older adults with HIV/AIDS? International evidence using the WHOQOL-HIV.

Increasingly older adults are being diagnosed with HIV/AIDS. In 2002, UNAIDS indicated that 13 aspects of quality of life (QoL) were poorer for older adults, but only sparse, inconsistent cross-cultural evidence is available. This statement was investigated using a reliable, valid measure (the WHOQOL-HIV) distributed in nine cultures (eight countries). HIV positive and well adults (n = 2089) were assessed across 30 QoL facets; 403 were 40+ years. It was confirmed that sleep, fatigue and sex-life were poorer areas of QoL for older HIV adults than younger. Furthermore, they could be misinterpreted as normal ageing signs. Moreover, older people reported greater dependency on medication. However, older HIV adults had better QoL than expected on 11 dimensions; negative feelings, social inclusion, and several environmental and spiritual facets. This highlights the extent of poor QoL in younger adults. After accounting for culture and gender, overall QoL and health in older HIV adults was explained by eight facets comprising 61.3% of the variance. Social relationships were paramount, especially personal relationships (41%), but support and sex-life also. Energy, negative feelings, cognitions, financial resources and HIV symptoms also contributed. Social interventions for ageing communities would improve well-being. This evidence could support global ageing and HIV policy.

A prospective trial of the effects of isotretinoin on quality of life and depressive symptoms.

BACKGROUND: Isotretinoin is an efficacious treatment for acne, but has been controversially linked with depression. OBJECTIVES: This study aimed to examine the effects of isotretinoin on quality of life(QoL) and depression using a prospective design. METHODS: The WHOQOL-BREF QoL measure and Centre for Epidemiological Studies Depression Scale were administered to consecutive outpatients with acne who were prescribed either isotretinoin (n = 65) or antibiotic treatment (n = 31).Patients and physicians rated acne severity independently. Groups were compared at baseline with a matched community sample (n = 94) and measurements repeated at 3 months for treatment groups. RESULTS: There were no differences between the three groups at baseline in terms of age, gender, depression or overall QoL. Acne was more severe in the treatment groups (P < 0·001). Depression was negatively correlated with QoL (P < 0·001)and hence was included as a covariate in repeated-measures analyses of QoL.Acne improved over time in both treatment groups (F = 48·2, P < 0·001). There was no detectable deterioration in depression score in either group (F = 1·1, not significant). QoL in the physical and social domains improved (P < 0·001) while psychological and environmental QoL was unchanged over time. The improvement in social QoL was greater in the isotretinoin group (P < 0·05). Those patients with higher baseline depression scores showed greater improvements in physical, psychological and social QoL (P < 0·001). CONCLUSIONS: Treatment of acne improves QoL, particularly in those with more depressive symptoms at the outset. Mood deterioration was not detected, but the possibility of subtle or rare mood effects of isotretinoin cannot be ruled out.

Predicting quality of life for people living with HIV: international evidence from seven cultures.

The need for a validated quality of life (QOL) model focussing on people living with HIV/AIDS has led to an international re-evaluation and extension of the Chronic Illness Quality of Life model using complex latent modelling techniques. After reoperationalising six model variables and including independence and sex-life, the WHOQOL-HIV was administered to 1281 people with asymptomatic-HIV (42%), symptomatic-HIV (40%) or AIDS (18%; 34 years; 62% male) living in Australia, Brazil, India (north & south), Italy, Thailand and Ukraine. The overall model fit was acceptable. Social inclusion did not directly improve QOL, but increased positive feelings, social support and perceived improvements of access to health and social care; all three improved QOL. Social inclusion increased perceived physical health indirectly through positive feelings. Better physical health improved sex-life and gave greater independence; both improved QOL. Gender and disease stage models were acceptable, fitting best for men and asymptomatic-HIV. Similar aspects of QOL were depleted for women and some disease stages. Increased social support did not consistently improve independence or positive feelings. Positive feelings improved the sex-life of men and those with asymptomatic-HIV. This cross-cultural approach combining assessment with theory, could guide future international interventions and practice.

A measure for quality of life assessment in chronic pain: preliminary properties of the WHOQOL-pain.

Chronic pain has a considerable impact on patient-reported outcomes such as quality of life (QoL). To assess QoL in people with chronic pain, a pain and discomfort module (PDM) was developed for use with the WHOQOL-100 and its psychometric properties assessed. Sixteen items covered four facets on pain relief; anger and frustration; vulnerability, fear and worry; and uncertainty. Chronic low back pain patients (n = 133) (age 56; pain duration 85 months; 65% female) completed the WHOQOL-100 and PDM, McGill Pain Questionnaire, and SF-12. The PDM showed good internal consistency reliability (alpha = .88) (alphas .66-.81). Except for anger, all facets associated most strongly with their 'parent' domain. Pain and poorer QoL were strongly associated, supporting construct validity. The SF-12 physical health component associated strongly with pain relief, and the mental health score with other facets, indicating good concurrent validity. Discriminant validity tests showed that PDM scores distinguished between ill and well patients, and between those reporting different health statuses. The PDM has fair to good psychometric properties indicating its value as a patient-reported outcome measure for clinical trials.

How is subjective well-being related to quality of life? Do we need two concepts and both measures?

Subjective well-being (SWB) and subjective quality of life (QoL) are key concepts describing experience, capacities, states, behaviours, appraisals, and emotional reactions to circumstances. Used widely in public discourse, policy, and research, their theoretical and empirical relations remain little explored. The present research aimed to develop an integrated model of SWB and QoL through empirically testing its overlapping and exclusive dimensions. Survey data was obtained from N = 2533 in 11 countries. Adults completed the WHOQOL Spirituality, Religion and Personal Beliefs (SRPB) instrument which assesses 33 QoL facets in 6 domains. The facets operationalize components of the hedonic SWB model, extended with eudaimonia, as SWB+. Network analyses, and regression models with random effect for cultural centre, assessed the differential contributions of SWB+ and QoL in predicting general QoL, explanatory power, and model parsimony. When all SWB+ and QoL variables are assessed together, the final model explains more variance in general QoL than either of the competing models; also it shows the most parsimonious fit. This fully integrated model contains only positive feelings from SWB+, with 13 other QoL facets drawn from all six domains, when adjusted for health status and educational level. These findings provide the foundation for a new Life Quality and Well-being (LQW) model that awaits confirmation. The LQW model improves on existing models of SWB+ and QoL by better explaining general QoL than facets of either model on its own. The 14 selected facets potentially offer a new, single measure with considerable conceptual breadth, and international foundations.

Quality of life and depression in chronic sexually transmitted infections in UK and Greece: The use of WHOQOL-HIV/STI BREF.

This is a comparative study aiming to investigate quality of life (QoL) and depression in individuals diagnosed either with human immunodeficiency virus/acquired immune deficiency syndrome (HIV/AIDS), or genital warts (GW) and genital herpes (GH), in two healthcare settings, in the United Kingdom (UK) or in Greece (Gr). Using a matched-pairs design, two equalized patient samples with sexually transmitted infections (STI) were recruited: from UK (n=43) and from Greece (n=43). QoL was assessed with WHOQOL-HIV BREF for HIV patients and WHOQOL-STI BREF -a newly adapted instrument- for genital warts and genital herpes patients. Depressive symptomatology was measured by the Centre for Epidemiological Studies- Depression Scale (CES-D) along with sociodemographic data. Results indicate that in both country- healthcare settings, a high percentage of individuals diagnosed with any type of STI, reported considerable depressive symptomatology: 35.7% for UK and 41.5% for Greek participants respectively. Regarding QoL, participants in the Greek healthcare settings reported significantly lower scores in the environment domain, and even lower scores were reported by the GW/GH group, in comparison to HIV. Specifically, these groups indicated significantly lower values in the following WHOQOL-BREF environment facets: (i) physical safety and security, (ii) participation in and opportunities for recreation/leisure activities, (iii) home environment, (iv) accessibility and quality in health and social care, and (v) transport facilities. Regarding correlation of QoL and depression, regression analysis provided significant evidence for depression having a differential effect on WHOQOL-BREF QoL domains. Evidence of increased depressive symptomatology in both STI patient- cohorts may shed light into unmet healthcare needs that should be addressed by healthcare providers in UK and Greece respectively. Furthermore, all types of Greek STI participants reported lower QoL, particularly the GW/GH group, indicating important unmet QoL needs in the environment domain, such as health and social care accessibility and quality, or environmental and social resources, all lowering everyday QoL. The present findings may provide guidelines for tailored mental health interventions alleviating depressive symptomatology in STI patients. Provision of targeted-interventions at healthcare and social-environmental levels will contribute to QoL/ health improvement in STI patients.

Chronic pain and depression: universal or personal helplessness?

The study investigates beliefs about control and links it to the depression found in those with chronic pain. These beliefs are interpreted within the new model of learned helplessness which distinguishes personal helplessness from universal helplessness on the basis of attributions. Despite higher levels of depressive symptoms in the pain group, this was not reflected by higher levels of self-blame or beliefs in the actions of others, so personal helplessness was discounted. Higher beliefs in chance, lack of self-blame and correlations between chance, depression and pain support the presence of universal helplessness in this group. The reporting behaviour of pain patients is discussed in the light of these findings.

Activities as indices of illness behaviour in chronic pain.

Activities reported by pain sufferers over a 7 day period were categorised on the basis of social context, and sleep, passive and recreational activities were found to differentiate between groups when dimensions of illness behaviour, mood and pain intensity were taken into account. The most interesting differences between groups were between organic and non-organic pain patients where the latter reported more sleep-related activities and these were related to strong beliefs in disease conviction, intense pain, and intense sadness. Both non-patient pain groups reported more passive activities indicating a greater awareness of the importance of rest. A comparison of qualitative and quantitative pain measures suggests that the MPQ may not be sufficient alone to measure the painful experience. The results have implications for the study and management of chronic pain patients, and provide evidence that reports of activity per se may be diagnostic indicators valuable in the study of illness behaviour.

A randomized and controlled trial of hydrotherapy in rheumatoid arthritis.

OBJECTIVE: The aim of this study was to evaluate the therapeutic effects of hydrotherapy which combines elements of warm water immersion and exercise. It was predicted that hydrotherapy would result in a greater therapeutic benefit than either of these components separately. METHODS: One hundred thirty-nine patients with chronic rheumatoid arthritis were randomly assigned to hydrotherapy, seated immersion, land exercise, or progressive relaxation. Patients attended 30-minute sessions twice weekly for 4 weeks. Physical and psychological measures were completed before and after intervention, and at a 3-month followup. RESULTS: All patients improved physically and emotionally, as assessed by the Arthritis Impact Measurement Scales 2 questionnaire. Belief that pain was controlled by chance happenings decreased, signifying improvement. In addition, hydrotherapy patients showed significantly greater improvement in joint tenderness and in knee range of movement (women only). At followup, hydrotherapy patients maintained the improvement in emotional and psychological state. CONCLUSIONS: Although all patients experienced some benefit, hydrotherapy produced the greatest improvements. This study, therefore, provides some justification for the continued use of hydrotherapy.

Validation of the WHOQOL-100: pain management improves quality of life for chronic pain patients.

OBJECTIVE: The study aimed to validate a new, multidimensional, multilingual instrument (the WHOQOL-100) for assessing QOL in chronic pain patients. METHODS: Chronic pain patients (N = 106) who agreed to participate in an established pain management program (PMP) were assessed for quality of life (QOL) before and one month after the intervention. The WHOQOL-100 is a generic profile containing 25 facets of QOL organized in 6 domains. It was administered concurrently with the MOS Short Form-36, the Beck Depression Inventory, and measures of pain intensity, duration, disruption and distress. RESULTS: The patients were outpatients and inpatients with a mean age of 44 years and mean pain duration of 8 years. The sample included 70 (66%) women. After the PMP, QOL had significantly improved generally. and in the physical, psychological and independence domains, as well as in 10 facets of QOL including pain and discomfort. Good QOL is consistently associated with low levels of pain severity and pain distress and little pain disruption. Overall internal consistency reliability was good and for most facets and domains but marginal for the pain facet. When compared with the SF-36. the WHOQOL-100 shows good concurrent validity, greater comprehensiveness and very good responsiveness to clinical change. DISCUSSION: The WHOQOL-100 indicates significant improvements to QOL for those entering a PMP and is validated for the clinical assessment of chronic pain patients and for use in multi-national clinical trials, clinical governance and audit.

Pain control and mechanisms for the measurement of pain.

Three different aspects of pain measurement have been selected for review in this paper. In the first section important scales for the measurement of subjective pain are evaluated and some of the main shortcomings outlined. Then follows a discussion of how perceptions of pain control can be assessed using available scales. Finally ways of looking at coping strategies for pain control are addressed.

Psychological aspects of pain in rheumatoid arthritis: a review.

Pain in rheumatoid arthritis (RA) is reviewed from a socio-cognitive perspective. Questions are raised about the usefulness of the distinction between organic vs non-organic pain patients, and alternative explanations for the behaviour of seronegatives is presented. A case based on physiology and behaviour is made for more studies of the acute and prechronic stages of RA. Four major areas of methodology are considered: studies of lay explanations about RA show that people hold relatively accurate views about the nature of pain in RA, and where causal explanations are given for pain and illness, this is conducive to good mental health. A section on the measurement of pain addresses issues about the applicability and standardisation of scales, and welcomes the move from the exclusive use of quantitative to qualitative multidimensional measures. The pain language of RA is described. Experimental studies of pain in RA appear to be of limited use. A review of activities and functional disability indicates that cognitive and behaviour modification techniques appear to have most promise in motivating chronic patients to be more active, and to comply with medication, as well as improving mental health. In a discussion of successful therapies, the principles of reducing uncertainty and increasing perceptions of control are the underlying features. However the reliability of cognitive therapies in the treatment of RA so far remains unproven.

Selecting national items for the WHOQOL: conceptual and psychometric considerations.

The WHOQOL is a new measure designed to assess quality of life cross-culturally in health and health care. An international core of 276 items covering 29 facets of quality of life organised into 6 domains has been established conceptually and then assessed in psychometric terms. The method also allowed for the inclusion of extra national items to enable the concept of quality of life to be complete for each language and culture and to achieve conceptual equivalence between different language versions in participating centres. The present study investigates the properties of these national items using data obtained from 3740 participants world-wide, who completed the instrument in 10 of 16 original WHOQOL centres. Five statistical criteria were applied to 144 national items to examine their performance in competition with internationally agreed core items from the same facet, using data obtained from within that centre. Multi-dimensional scaling and cluster analysis was used to examine the structural relationship of national items within their own facet and directed their inclusion. Forty (29%) national items were selected and detailed examples demonstrate the selection methods used. They show how entirely new facets as well as individual items can be assessed for appending to the core WHOQOL-100. They also enable ambiguity to be resolved where there may be doubt about whether proposed items constitute part of an existing facet or justify a new one. Where national items are similar in more than one centre, a mechanism is provided whereby these items can be re-evaluated as candidates for inclusion in any future revision of the international core. Lastly, a case is identified that may provide justification for the establishment of national facets.

Measuring quality of life in Britain: introducing the WHOQOL-100.

Quality of life is an important outcome measure in the evaluation of treatments for a range of chronic physical and psychological disorders. The psychometric properties of a new British quality-of-life instrument-the WHOQOL-100--are presented, as part of an international project to create a multilingual, multidimensional profile for cross-cultural use. The WHOQOL was completed by an adult sample (N = 320) of well people and patients attending GP surgeries and out-patient clinics and from inpatient wards. The sick represented 16 disease categories and all were selected for age, gender, and disease severity. The levels of quality of life of different disease groups and sociodemographic categories are reported. The presence or absence of positive feelings provides the best single predictor of quality of life in Britain today, and this improves when supplemented by information about mobility and energy. The scores of the scale discriminate well between sick and well people and concur with reported health status. The concept of quality of life covering 25 facets (hierarchically organized within six domains) was largely confirmed by mapping intercorrelations. The WHOQOL-100 shows excellent overall internal consistency reliability and can be used with individuals. This level of reliability extends to all domains and patient subgroups. Seven UK national items were also assessed for inclusion. The results show that WHOQOL-100 promises to be a comprehensive profile for generic use in the evaluation of contemporary health care.

Social cognitions, personality and chronic pain.

The assumptions of cognitive social psychology provide a suitable analysis for the understanding of how chronic pain suffers interpret information and make decisions about attendance for treatment. This approach pays particular attention to the social context in which the pain behaviour occurs. Studies of socio-cognitive aspects of pain are reviewed and the implications for future research are outlined.

How appropriate is the WHOQOL-BREF for assessing the quality of life of adolescents?

BACKGROUND: Using mixed-methods research, we investigated whether the adult version of the WHOQOL-BREF was acceptable and feasible to use with adolescents (13-19), and what features might need to be changed to develop it. Differences from young adults quality of life (QoL) (20-30 years) could add justification. METHODS: Preliminary psychometric properties of the adult WHOQOL-BREF were examined in 208 adolescents and 204 young adults. Unhealthy adolescents diagnosed with acne or elevated depressive symptoms (CES-D) were compared with healthy adolescents. Cognitive interviewing used 'think aloud' techniques with six healthy adolescents during WHOQOL-BREF completion. Concepts and wording were thematically analysed for relevance, comprehension and comprehensiveness. RESULTS: Little data were missing from the WHOQOL-BREF suggesting some feasibility and acceptability to adolescents. Compared with adults, adolescents perceived greater access to information, a better home environment, worse pain, and medication dependency. Internal consistency reliability for adolescents was good (α = .89), especially psychological and environmental QoL. Content validity especially for social and environment domains was supported. Domains validly discriminated between high- and low-depressive symptoms but not acne groups. Additional new facets on autonomy, altruism and physical fitness and changed item contents are proposed. CONCLUSION: The evidence indicates that developing a new adolescent version is justifiable. Cross-cultural research should build on these preliminary findings.