Clinicians' experiences with cancer patients living longer with incurable cancer: a focus group study in the Netherlands.

AIM: To explore (1) experiences of primary care physicians (PCPs) and oncological medical specialists about providing care to patients living longer with incurable cancer, and (2) their preferences concerning different care approaches (palliative support, psychological/survivorship care support). BACKGROUND: At present, oncological medical specialists as well as PCPs are exploring how to improve and better tailor care to patients living longer with incurable cancer. Our previous study at the in-patient oncology unit showed that patients living longer with incurable cancer experience problems in how to deal with a prognosis that is insecure and fluctuating. To date, it could be argued that treating these patients can be done with a 'palliative care' or a 'survivorship/psychosocial care' approach. It is unknown what happens in actual medical practice. METHODS: We performed multidisciplinary group meetings: 6 focus groups (3 homogenous groups with PCPs (n = 15) and 3 multidisciplinary groups (n = 17 PCPs and n = 6 medical specialists) across different parts of the Netherlands. Qualitative data were analysed with thematic analysis. FINDINGS AND CONCLUSIONS: In the near future, PCPs will have an increasing number of patients living longer with incurable cancer. However, in a single PCP practice, the experience with incurable cancer patients remains low, partly because patients often prefer to stay in contact with their medical specialist. PCPs as well as medical specialists show concerns in how they can address this disease phase with the right care approach, including the appropriate label (e.g. palliative, chronic, etc.). They all preferred to be in contact early in the disease process, to be able to discuss and take care for the patients' physical and psychological well-being. Medical specialists can have an important role by timely referring their patients to their PCPs. Moreover, the disease label 'chronic' can possibly assist patients to live their life in the best possible way.

Lost in fragmentation - care coordination when somatic symptoms persist: a qualitative study of patients' experiences.

BACKGROUND: GPs 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. AIM: To explore the experiences of patients with PSS relating to coordination of care - in particular by their GP - during their illness trajectory. DESIGN AND SETTING: This 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). METHOD: Thematic content analysis of 15 interviews. RESULTS: Three 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. CONCLUSION: Patients 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.

Patients' experiences with fluctuations in persistent physical symptoms: a qualitative study.

OBJECTIVES: To explore patients' experiences with fluctuations in persistent physical symptoms (PPS) and to understand which factors-from their viewpoint-play a role in these fluctuations. DESIGN: Qualitative study using semistructured interviews and thematic content analysis. SETTING: This 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. PARTICIPANTS: Interviews were conducted with a sample of fifteen patients with PPS to explore their experiences with fluctuations in symptom severity. RESULTS: We 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. CONCLUSIONS: Fluctuations 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.