Diane Whalley

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.

Development of the PsAQoL: a quality of life instrument specific to psoriatic arthritis

Background: Patient reported outcome measures used in studies of psoriatic arthritis (PsA) have been found to be inadequate for determining the impact of the disease from the patient’s perspective. Objective: To produce the PsAQoL, a PsA-specific quality of life (QoL) instrument, employing the needs based model of QoL that would be relevant and acceptable to respondents, valid, and reliable. Methods: Content was derived from qualitative interviews conducted with patients with PsA. Face and content validity were assessed by field test interviews with a new sample of patients with PsA. A postal survey was conducted to improve the scaling properties of the new measure. Finally, a test-retest postal survey was used to identify the final measure and to test its scaling properties, reliability, internal consistency, and validity. Results: Analysis of the qualitative interview transcripts identified a 51 item questionnaire. Field test interviews confirmed the acceptability and relevance of the measure. Analysis of data from the first postal survey (n = 94) reduced the questionnaire to 35 items. Rasch analysis of data from the test-retest survey (n = 286) identified a 20 item version of the PsAQoL with good item fit. This version had excellent internal consistency (α = 0.91), test-retest reliability (0.89), and validity. Conclusions: The PsAQoL is a valuable tool for assessing the impact of interventions for PsA in clinical studies and trials. It is well accepted by patients, taking about three minutes to complete, is easy to administer, and has excellent scaling and psychometric properties.

What Patients Want From Primary Care Consultations: A Discrete Choice Experiment to Identify Patients’ Priorities

PURPOSE The consultation is fundamental to the delivery of primary care, but different ways of organizing consultations may lead to different patient experiences in terms of access, continuity, technical quality of care, and communication. Patients’ priorities for these different issues need to be understood, but the optimal methods for assessing priorities are unclear. This study used a discrete choice experiment to assess patients’ priorities. METHODS We surveyed patients from 6 family practices in England. The patients chose between primary care consultations differing in attributes such as ease of access (wait for an appointment), choice (flexibility of appointment times), continuity (physician’s knowledge of the patient), technical quality (thoroughness of physical examination), and multiple aspects of patient-centered care (interest in patient’s ideas, inquiry about patient’s social and emotional well-being, and involvement of patient in decision making). We used probit models to assess the relative priority patients placed on different attributes and to estimate how much they were willing to pay for them. RESULTS Analyses were based on responses from 1,193 patients (a 53% response rate). Overall, patients were willing to pay the most for a thorough physical examination (

The development of the L-QoL: a quality-of-life instrument specific to systemic lupus erythematosus

40.87). The next most valued attributes of care were seeing a physician who knew them well (

Adaptation into Danish of the Stanford Health Assessment Questionnaire (HAQ) and the Rheumatoid Arthritis Quality of Life Scale (RAQoL).

12.18), seeing a physician with a friendly manner (

International development of the Parents' Index of Quality of Life in Atopic Dermatitis (PIQoL-AD)

8.50), having a reduction in waiting time of 1 day (

What are the key attributes of primary care for patients? Building a conceptual ‘map’ of patient preferences

7.22), and having flexibility of appointment times (

Health status measurement in Parkinson's disease: Validity of the PDQ-39 and Nottingham Health Profile.

6.71). Patients placed similar value on the different aspects of patient-centered care (

Patient empowerment in long-term conditions: Development and preliminary testing of a new measure

12.06–

Measuring Quality of Life in Patients with Depression or Anxiety

14.82). Responses were influenced by the scenario in which the decision was made (minor physical problem vs urgent physical problem vs ambiguous physical or psychological problem) and by patients’ demographic characteristics. CONCLUSIONS Although patient-centered care is important to patients, they may place higher priority on the technical quality of care and continuity of care. Discrete choice experiments may be a useful method for assessing patients’ priorities in health care.