Care needs of patients with the post-COVID syndrome in Dutch general practice: an interview study among patients and general practitioners

Abstract

Background: The post-COVID syndrome (PCS) has a large impact on an individual's daily life. The wide variety of symptoms in PCS patients and the fact that it is still relatively new makes it difficult for general practitioners (GPs) to recognize, diagnose and treat patients with PCS, leading to difficulties in assessing and fulfilling healthcare needs. It is largely unknown what the experiences of Dutch patients and GPs are with PCS and, therefore, we gained insight into the different aspects of living with PCS and the associated healthcare needs.

Methods: Semi-structured interviews were performed with 13 self-reported PCS patients (varying in sex, age, education, and health literacy) and 6 GPs (varying in gender, age, and type of practice) between January-July 2022. Patients and GPs were most likely unrelated (not in the same practices). The data have been analysed using the Thematic Analysis method.

Results: Experiences appeared to vary between two types of PCS patients that emerged during the interviews: (1) individuals with good pre-existing health status (PEHS) who are severely affected by PCS and have difficulty recovering and (2) individuals with poorer PEHS whose health became even poorer after COVID-19 infection. The interviews with PCS patients and GPs revealed two main themes, in which the types of patients differed: (1) aspects of living with PCS; individuals with good PEHS mainly experience symptoms when overstimulated, while individuals with poorer PEHS generally feel exhausted continuously. (2) Healthcare experiences; GPs emphasized that individuals with good PEHS seem to benefit from support in distributing their energy by careful planning of daily activities, whereas individuals with poorer PEHS require support in activation. Patients and GPs emphasised the importance of taking patients seriously and acknowledging their symptoms. Finally, the patients interviewed indicated that some GPs doubted the existence of PCS, resulting in insufficient recognition.

Conclusion: Awareness of the differences in needs and experiences of the two types of PCS patients could contribute to more appropriate care. Acknowledgement of PCS by GPs as a real syndrome is important for patients and plays an important role in coping with or recovering from PCS. A multidisciplinary person-centred approach is important and can be coordinated by a GP.

Keywords: Appropriate care; COVID-19; Care continuity; General practice; Patient experiences; Post-COVID syndrome; Qualitative research.

Fig. 1

Themes and subthemes (yellow: experiences of patients and GPs, blue: experiences of patients)