Lost in fragmentation — care coordination when somatic symptoms persist: a qualitative study of patients’ experiences

Abstract

BackgroundGPs can play a central role in the care of patients with persistent somatic symptoms (PSS). To date, little is known about these patients’ experiences relating to their coordination of care.AimTo explore the experiences of patients with PSS relating to coordination of care — in particular by their GP — during their illness trajectory.Design and settingThis qualitative study was carried out from January to April 2019 in the Netherlands as part of a multicentre prospective cohort study on the course of PSS (PROSPECTS).MethodThematic content analysis of 15 interviews.ResultsThree themes were identified: care fragmentation during the diagnostic trajectory; transition from the search for a cure to coping; and reframing to coping: GPs’ role in facilitating supportive care. Patients experienced a lack of collaboration from healthcare workers during the diagnostic trajectory. Guidance by their GP in a process of shared decision making was positively valued by patients. Moving the focus from searching for a cure to coping with symptoms was described as a ‘personal endeavour’, made even more challenging by the ongoing uncertainty experienced by patients. When reframing to coping, the extent to which patients felt aligned with their GP played an important role in whether their supportive care request was met.ConclusionPatients experienced difficulties when navigating the diagnostic trajectory and shifting to coping. The findings of this study underline the importance of collaboration between GPs and other healthcare professionals during the diagnostic trajectory. The authors recommend that GPs provide proactive guidance and are sensitive to patients who shift to coping by providing them with supportive care in a process of shared decision making.