Exploring patient expectations in diagnosis and management of fibromyalgia in Saudi Arabia: a focus group study

Fibromyalgia is a chronic condition that is characterized by widespread musculoskeletal pain, fatigue, and cognitive difficulty. Patients often face delays in diagnosis and challenges in managing symptoms, which can significantly affect daily life. This study explores patients’ experiences from symptom onset through diagnosis and treatment. A qualitative study was conducted drawing upon the experiences of individuals living with fibromyalgia. Three online focus groups were conducted, with participants distributed across groups; each participant attended one session. Discussions were guided by a focus group guide developed from the literature and expert input. Participants were asked about their experiences and diagnosis of fibromyalgia, their beliefs and expectations about its management and prognosis, and any suggestions that they had that might improve existing services or resources. Thematic analysis of transcripts from these sessions was performed to identify key themes. Fourteen individuals diagnosed with fibromyalgia (12 female, 2 male; mean age 43.8 years) participated in the study. Participants were distributed across three online focus group sessions, with each participant attending one session only. Analysis of participants’ experiences identified six key themes, which were: (1) Participants’ experience with diagnosis; (2) uncertainty about condition onset, cause, and treatment; (3) impact on daily life; (4) management techniques and coping strategies; (5) Participants’ expectations about management and prognosis; and (6) Participants’ suggestions for treatment. Participants reported their frustrations with delays in diagnosis, misdiagnoses, having received inconsistent support following diagnosis, and to have been administered treatments that overlooked physical symptoms. These issues contributed to emotional distress. Clearer communication, holistic care, a more patient-centered approach, and increased awareness of fibromyalgia among healthcare providers and the public would enhance management of this condition and treatment outcomes.