Rheumatology outcomes: the patient's perspective. A multicentre focus group interview study of Swedish rheumatoid arthritis patients

Abstract

Suggesting a holistic approach to rheumatology care, the study results indicate that the illness and outcomes have to be evaluated within an individual RA patient's total life situation, described in the identified themes: 'Normal life', 'Physical capacity', 'Independence' and 'Well-being'. Development and validation of measurements covering these issues is suggested. More research is needed about communication and how patients experience their roles in the rheumatology clinic.

Persons with Rheumatoid Arthritis Challenge the Relevance of the Health Assessment Questionnaire: A Qualitative Study of Patient Perception

“…[22,23]). A few studies have, in addition, related those findings to the HAQ, such as highlighting how context affects HAQ relevance [11], as discussed in Unnecessary items; noting the floor effect [12] as presented in Missing items; or seeing the HAQ as a mere representation of more complex activities [13], as shown in Capturing holistic perspectives.…”

“I suddenly felt I’d aged”: A qualitative study of patient experiences of polymyalgia rheumatica (PMR)

“…Only by exploring patient experiences can the outcomes which are meaningful to patients be identified. For example, in rheumatoid arthritis, an appreciation of the significance of fatigue was first identified through qualitative exploration [9,10] and it is now recommended that fatigue is measured in addition to the core outcome set in all clinical trials of the condition [11].…”

Item Development and Face Validity of the Rheumatoid Arthritis Patient Priorities in Pharmacological Interventions Outcome Measures

“…Feeling well and returning to normal were consistently described as important outcomes by RA patients in focus groups and interviews in the UK [15,16,18] and in Sweden [19]. Third, RA patients have both similar and different priorities to clinicians.…”