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

Abstract

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.

Quality indicators for collaborative care networks in persistent somatic symptoms and functional disorders: a modified delphi study

“…The top indicator, “shared vision of care for PSS/FD” is a prime example of this. Many patients report receiving contradictory information from different healthcare professionals treating the same illness, resulting in a poor experience and distrust, and demonstrating a lack of shared vision [ 7 ]. Within the field of PSS/FD this is particularly important given the ongoing discussion on the different names, as well as the competing and varied explanatory models used [ 29 , 30 ].…”

“…They also experience communication gaps across and within services. This results in poor outcomes as well as confusion and distrust [ 7 ]. Good PSS/FD care requires multidisciplinary involvement [ 8 ], preferably as collaborative care, as has been stated in research and commissioning guidelines [ 9 ].…”