ObjectivesTo explore patients’ experiences with fluctuations in persistent physical symptoms (PPS) and to understand which factors—from their viewpoint—play a role in these fluctuations.DesignQualitative study using semistructured interviews and thematic content analysis.SettingThis qualitative study is part of a multicentre prospective cohort study on the course of PPS. Patients were recruited in general practices and specialised treatment facilities for PPS throughout the Netherlands.ParticipantsInterviews were conducted with a sample of fifteen patients with PPS to explore their experiences with fluctuations in symptom severity.ResultsWe identified three themes in the analysis: (1) patterns in symptom fluctuations (2) perceived causes of symptom exacerbations and (3) Patients’ strategies in gaining control over symptom exacerbations. Daily and weekly fluctuations in symptoms were an important element in patients’ experiences. In particular anticipating on the worsening of symptoms impacted their daily routines and posed various challenges. Symptom exacerbations were attributed to overstepping physical limits and/or the impact of negative emotions. Resigning to physical limits, adjusting ones daily planning, weighing personal needs and learning to say ‘no’ were described as different strategies in gaining control over symptom exacerbations.ConclusionsFluctuations in the severity of symptoms—and in particular daily and weekly symptom exacerbations—are an important element of the symptom experience in patients with PPS and poses various challenges. Patients attributed symptom exacerbation to overstepping physical limits and/or negative emotions. Patients described different strategies in gaining control over symptom exacerbations.

Background: GPs can play a central role in the care for patients with persistent somatic symptoms (PSS). To date, little is known about patients’ experiences with the coordination of care. Aim: Exploring experiences of patients with PSS with the coordination of care -in particular by their GP- during their illness trajectory. Design and setting: Qualitative study, part of a multi-center prospective cohort study on the course of PSS (PROSPECTS). Method: Thematic content analysis of fifteen interviews. Results: We identified three themes: 1) care fragmentation during the diagnostic trajectory; 2) transition from the search for a cure to coping; and 3) reframing to coping: GP’s role in facilitating supportive care. Patients experienced misalignment between healthcare providers (HCPs) during the diagnostic trajectory and some ended up in a ‘collusion of anonymity’ (repeated cross-referrals between specialists). Guidance by their GP in a process of shared decision making was positively valued. Moving focus from searching for a cure to coping with symptoms was described as a personal endeavor, challenged by ongoing uncertainty. When reframing to coping, the extent to which patients were aligned with their GP played a role in whether their supportive care request was met. Conclusion: Patients experienced difficulties navigating the diagnostic trajectory and shifting to coping. Our findings underline the importance of collaboration and alignment between GPs and other HCPs during the diagnostic trajectory. We recommend that GPs provide pro-active guidance and are sensitive to patients who shift to coping by providing supportive care in a process of shared decision making.