Exploring the impact of cardiac sarcoidosis on health-related quality of life: interviews for item-generation

Le résumé fourni par la source

Background: Health-related quality of life (HRQoL) is the main priority for people living with sarcoidosis. People living with cardiac sarcoidosis (CS) are likely to have greater impairment on HRQoL. We set out to develop the CARD-SARC, a patient-reported outcome measure (PROM) to assess the impact of CS on HRQoL. Aim: one-to-one interviews to elicit relevant concepts for the CARD-SARC item-generation. Methods: the seven stages from the Brinkmann and Kvale model was followed. A convenience sampling strategy was used to ensure diversity from two CS-specialist centres. The patient and public involvement advisory group (PPIAG) collaborated to develop a flexible interview-guide. The interviews were limited to 60-minutes and digital audio-recorded with verbatim transcription. An inductive thematic analysis was conducted and managed with a computer-assisted qualitative data analysis software (NVivo), including notes from a reflective diary. Results: Nine semistructured interviews were conducted. A total of 158 themes emerged with eight major themes describing the impact of CS on HRQoL: "physical", "functional", "psychological, emotional, spiritual", "social network/support", "occupational balance/role value", "symptoms", "healthcare" and "environment". The analysis was guided by the PPIAG (experts' opinion) and supported with additional qualitative findings from clinical observations. Conclusion: Each source of data was planned independently, however the PPIAG facilitated the simultaneous triangulation method for item-generation with qualitative and quantitative sources and techniques. The use of qualitative interviews was fundamental to confirm the relevance of the potential items.

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