Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam Public Health research institute
Department of General Practice
Hieke Barends is a GP trainee and PhD student at Amsterdam UMC. She finished her MD in 2011 and has a background in medical antropology and sociology. Her research project focuses on the long-term (5- year) course of persistent somatic symptoms (PSS)- also known as medically unexplained symptoms. In general practice, patients frequently present with somatic symptoms for which no sufficient somatic explanation is found after adequate history taking, physical examination and additional investigations. When these symptoms persist, they are associated with elevated psychological distress and functional impairment. Knowledge about the long-term course of PSS can help to improve classification and understanding of PSS, to inform patients and guide clinicians.

Presenter of 2 Presentations

FLUCTUATIONS IN PERSISTENT SOMATIC SYMPTOMS: A PATIENT PERSPECTIVE

Date
05.07.2021, Monday
Session Time
08:00 AM - 09:00 AM
Room
On-Demand 1 Slide 5 Mins
Lecture Time
08:05 AM - 08:10 AM
Session Icon
On Demand

Abstract

Abstract Body

1.Background and purpose

Patients with somatic symptoms not attributable to verifiable, conventionally defined diseases are common in general practice. More knowledge on the course of persistent somatic symptoms (PSS) over time is needed. Our prior quantitative findings suggested that most patients with PSS might experience exacerbations and remissions of symptoms. The aim of this qualitative study was to explore patients’ experiences with fluctuations in PSS and to understand which factors -from their viewpoint- play a role in these fluctuations.

2. Methods

Qualitative study based on fifteen semi-structured interviews and thematic content analysis. Patients were recruited in general practices and specialized treatment facilities for PPS throughout the Netherlands.

3. 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. Strategies mentioned to gain control over symptom exacerbations included resigning to physical limits, adjusting one’s daily planning, weighing personal needs and learning to say ‘no’.

4. Conclusion

Our study highlights that fluctuations in the experienced severity of symptoms -and in particular daily and weekly symptom exacerbations- are an important element of the symptom experience in PSS and deserve more attention in care for these patients and in research.

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COORDINATION OF CARE FOR PATIENTS WITH PERSISTENT SOMATIC SYMPTOMS: A PATIENT’S PERSPECTIVE

Session Name
Date
05.07.2021, Monday
Session Time
08:30 AM - 09:00 AM
Room
On-Demand Short Orals
Lecture Time
08:45 AM - 08:50 AM
Session Icon
On Demand

Abstract

Abstract Body

1.Background and purpose

General practitioners play a central role in providing and coordinating care for patients with persistent somatic symptoms (PSS), but often encounter challenges in the management of these patients. Little is known on how patients with PSS experience the coordination of care and their GP’s role therein.

2. Methods

Qualitative study using fifteen semi-structured interviews and thematic content analysis. Patients were recruited in general practices and specialized treatment facilities for PSS throughout the Netherlands.

3. Results

We identified two overarching themes: 1) coordination during the diagnostic trajectory and 2) transition from diagnostic trajectory to symptom management. Most patients had an extensive diagnostic trajectory, experienced fragmented care and received contradictory information. Patients underlined the need of a pro-active, coordinating role of the GP during the diagnostic phase. Making a clear plan with the GP prior to a referral (e.g. active back-referral) and giving the GP a linchpin role were experienced as positive. In the absence of a diagnosis, patients encountered difficulties with the transition towards symptom management. GPs often seemed unable to provide supportive strategies when a diagnosis was lacking. Searching for solutions together with their GP and being offered symptom management strategies were positively valued.

4. Conclusion

Patients with PSS frequently experienced fragmentation in care and received contradictory information during the diagnostic trajectory; they experienced difficulties in finding support in dealing with symptoms when a diagnosis was lacking. A pro-active, coordinating GP during the diagnostic trajectory and being supportive and providing strategies to manage symptoms are recommended.

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