Personal factors in systemic sclerosis and their coverage by patient-reported outcome measures: A multicentre European qualitative study and literature review

Abstract

BACKGROUND Systemic Sclerosis (SSc) is an autoimmune disease where thickening of the skin can lead to reduced body function and limitations in activities. Severe forms can also affect and seriously damage inner organs. Patient--centred rehabilitation emphasises considerations of patients' background, experience and behaviour which highlights the need to know if patient--reported outcome measures (PROMs) include such personal factors. AIMS To identify and describe personal factors in the experiences of functioning and health of persons with SSc and to examine if and to what extent PROMs in SSc--research cover these factors. DESIGN AND POPULATION Data from a qualitative study with focus group interviews in patients with SSc were analysed and PROMs in SSc--research were identified in a literature review between 2008--2013. SETTING Outpatient clinics at rheumatology department in four European countries. METHODS Data from interviews with 63 participants were analysed using a structure of personal factors developed by Geyh et al. Identified PROMs were analysed and linked to main concepts, related to the personal factors, found in the interview data. RESULTS Nineteen main concepts related to the area "patterns of experience and behaviour" in the personal factor structure, 16 to "thoughts and beliefs", nine to "feelings", one to "motives" and one to "personal history and biography" respectively. Among the 35 PROMs identified, 15 did not cover any of the identified concepts. Concepts within the area of "feelings" were mostly covered by the PROMs. Five of the PROMs covered "patterns of experience and behaviour" while "motives" and "personal history and biography" were not covered at all. Four of the identified PROMs covered concepts within the areas "feelings", "thoughts and beliefs" and "patterns of experience and behaviour" in the same instrument. The Illness Cognition Questionnaire and Illness Behaviour Questionnaire were such PROMs. CONCLUSION Patterns of experience and behaviour had the highest number of concepts related to personal factors, but few of the PROMs in SSc--research covered these factors. Only some PROMs covered several personal factors areas in the same instrument. CLINICAL REHABILITATION IMPACT The results would be of value when developing a core set for outcome measurements in SSc.