M. A. Chamberlain

Development of the ASQoL: a quality of life instrument specific to ankylosing spondylitis

Background: Although disease-specific health status measures are available for ankylosing spondylitis (AS), no instrument exists for assessing quality of life (QoL) in the condition. Objective: To produce an AS-specific QoL measure that would be relevant and acceptable to respondents, valid, and reliable. Methods: The ASQoL employs the needs-based model of QoL and was developed in parallel in the UK and the Netherlands (NL). Content was derived from interviews with patients in each country. Face and content validity were assessed through patient field test interviews (UK and NL). A postal survey in the UK produced a more efficient version of the ASQoL, which was tested for scaling properties, reliability, internal consistency, and validity in a further postal survey in each country. Results: A 41 item questionnaire was derived from interview transcripts. Field testing interviews confirmed acceptability. Rasch analysis of data from the first survey (n=121) produced a 26 item questionnaire. Rasch analysis of data from the second survey (UK: n=164; NL: n=154) showed some item misfit, but showed that items formed a hierarchical order and were stable over time. Problematic items were removed giving an 18 item scale. Both language versions had excellent internal consistency (α=0.89–0.91), test-retest reliability (rs=0.92 UK and rs=0.91 NL), and validity. Conclusions: The ASQoL provides a valuable tool for assessing the impact of interventions for AS and for evaluating models of service delivery. It is well accepted by patients, taking about four minutes to complete, and has excellent scaling and psychometric properties.

Factors determining participation in young adults with a physical disability: a pilot study

Objectives: To evaluate in a pilot study the usefulness of measures of health and psychosocial status for use with young people with physical and complex disability. Also to test empirically a conceptual model of the factors determining key outcomes in young disabled adults, in particular, participation (handicap). Design: A cross-sectional study involving face-to-face interviews with young adults aged 16–28 years (n = 45) with physical and complex disabilities. A group of nondisabled college students completed the same set of questions to provide normative scores for some psychosocial measures. Setting: Young people with physical disabilities were recruited from the area of North and North East Lincolnshire, and nondisabled young people from the Leeds area. Methods: Standardized measures of impairment, disability and handicap, together with various psychosocial scales were incorporated into a structured face-to-face interview. Standardized measures included the Nottingham Health Profile (NHP), the Barthel Index, the London Handicap Scale, Rosenbergs Self-esteem Scale and the Proactive Scale. Results: Regression analysis showed the most important predictors of participation were energy and pain (NHP), disability (Barthel) and self-efficacy. Most of the health status measures were able to discriminate between disabled and nondisabled young people, but some measures lacked face validity for the ‘nonwalking’ disabled group. Conclusions: Both health status and psychosocial factors were found to impact on the participation of young people. Impairment and disability however, did not impact adversely on self-ratings of health or quality of life and it is clear from these results that having a disability may limit participation, but is not necessarily synonymous with a poorer quality of life.

Living with thalidomide: Health status and quality of life at 40 years:

Thalidomide was first synthesized in 1953 and was subsequently marketed as a mild hypnotic and sedative in more than 20 countries. By 2001 it was estimated that there were 5000 survivors from the 10,000 – 12,000 babies who were, as a result, born with severe abnormalities. For these survivors, recent concerns have emerged about their physical state, in particular their levels of pain and their ability to maintain independence. It was therefore wished to ascertain health status and current concerns amongst a sample of survivors living in the UK. A combination of qualitative and quantitative methodologies was employed. Qualitative interviews were undertaken with a sample drawn from the population affected by thalidomide known to the Thalidomide Trust. Selection of participants was based upon a theoretical sample frame. Postal questionnaires to examine health status and various psychosocial aspects concerned with living with the consequences of thalidomide were sent subsequently to these same participants and to a random sample of those not originally drawn for the qualitative interviews. For the qualitative interviews, 28 agreed to take part; two refused and the remainder did not respond. Those agreeing to interview were representative of the original compensation bands (Chi-Square = 3.929; p = 0.416). Several themes emerged from these interviews, including the effects on work and career; coping in terms of attitude to life, self-image, confidence, self-esteem, stress and emotion; relationships, independent living issues and emergent problems such as pain, quality of life, and anxiety about the future. A postal questionnaire was then sent to those who had agreed to interview (28), plus a random sample of the remaining group who were not initially chosen for the qualitative interviews. In total 82 people were sent the questionnaire, of whom 41 (50%) responded. Two-thirds of responders were female. Seven out of ten lived with a partner, and over half (56%) had children. Almost half (46%) were in work, but 32% reported they were permanently unable to work because of disability. Current levels of impairment were found to be similar across groups defined by the original compensation band. In contrast, the activity limitation measures showed a steep gradient across bands but only 37% considered themselves disabled. Nevertheless, despite the restriction in activities for some, levels of participation were similar across bands; likewise simple summary items on health status and quality of life were similar and 70% reported their quality of life (QoL) was good or better than good. Yet nine in ten believed that their body was less flexible than in the past. Almost as many reported they were less able to carry things. It turns out that when compensation bands were grouped (1 – 3, 4 – 5) to highlight those most severely affected according to the original assessment, then those in the higher band grouping reported significantly more musculoskeletal problems, high levels of fatigue and increasing dependency and feelings of vulnerability. It is clear that the original ranking of disability severity, as expressed through the compensation, bands (allocated in early childhood in most cases), is consistent with current ranking of limitations in activity and participation. Nevertheless, despite high levels of disability amongst some survivors, lifelong adjustments to the original impairments have resulted in more than two thirds reporting at least a good quality of life. However, survivors expressed increasing concern about emerging musculoskeletal and other problems which may compromise hard-won independence.

The Behçet's disease activity index.

OBJECTIVE To identify a subset of clinical features of Behçets disease (BD) that can be summated to form an overall index of disease activity appropriate for clinical and research use internationally. METHODS Completed Behçets Disease Current Activity Forms were collected from a total of 524 patients with BD from five countries. The data from 14 questions on the form were subjected to Rasch analysis to establish whether these items form a hierarchical and unidimensional scale of disease activity, both within and between countries. RESULTS The data showed a good fit to the Rasch model within three countries using a dichotomous scoring function. However, when the data from these three countries were pooled, the fit to the model was poor. Cross-cultural differential item functioning (DIF) was found in seven items in the pooled data. When the items with DIF by country were separated and two items were removed, the resulting 26-item scale showed a good fit to the Rasch model. CONCLUSIONS Within Turkey, Korea and the UK, the 14 items can be summated to give an index of disease activity. Analysis of the pooled data confirmed that the index is not suitable for comparison between countries or for pooling of data in the raw form, but after fitting the data to the Rasch model such comparisons can be made. This gives a scaling tool that is quick and easy to use in the clinical situation.

Living with Behçet’s Disease

The unpredictable course of BD has far reaching effects on individuals’ lives influencing relationships, day to day activities as well as more significant life events. The emotional impact of living with this illness should not be underestimated.