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Course of medically unexplained physical symptoms (MUPS) and underlying mechanisms, a long term follow-up study

Persistent somatic symptoms (PSS) are common. Symptoms can persist for years and affect daily life. 

Aim and approach

Little is known about the long-term course of PSS. Therefore, we followed PSS patients for a period of 5 years, took questionnaires and interviewed participants about their experiences. We focused on severity of the symptoms and on physical and mental functioning.

Results

We obtained data over the whole period of 5 years from 238 participants. The majority reported persistence of symptoms and only slight improvements in physical and mental functioning. 

Interviews with 15 participants revealed that their symptoms fluctuated considerably. Worsening symptoms affected their daily functioning. They reported a variety of strategies to gain control over their symptoms.

We tested 3 theories from literature on the course of PSS and associated factors. These were largely confirmed. This unique cohort has considerably increased our knowledge of the long-term course of PSS.

Recommendations for clinical practice

Clinicians should take note of the diversity in course patterns among patients with persisting somatic symptoms. We advise them to explore the patients’ experiences with fluctuations in symptom severity and functioning, and the consequences of symptom exacerbations for daily life. Regarding coordination of care, we recommend shared decision-making in which the GP provides active guidance through the healthcare landscape. An important role for the GP and other health care providers is to guide and help patients shift their focus from seeking a diagnosis and cure to symptom acceptance, improving patients’ symptom management strategies and focusing on achievable goals that improve their quality of life. 

Regarding the mechanisms we explored, clinicians can ask about these mechanisms during symptom exploration and then integrate our findings on these mechanisms when co-creating personalized explanations for PSS with their patients. 

Recommendations for research

Many participants already had symptoms for several years. Research focusing on patients with newly presented symptoms in general practice might provide valuable knowledge about factors that influence the course and prognosis. In which patients do symptoms resolve quickly, whose symptoms persist?

The fluctuations in symptoms we found are another area where we need more research: what are possible mechanisms of these fluctuations? It would be useful to study the health care use of PSS patients more extensively. We recommend addressing the obstacles and barriers in care coordination and collaboration when somatic symptoms persist, both from the healthcare professionals’ and the patients’ viewpoint.

Products

Title: Somatosensory amplification in relation to symptom severity and functioning in patients with persistent physical symptoms: a cross-sectional analysis.
Author: Barends H, Claassen-van Dessel N, van der Wouden JC, Dekker J, van der Horst HE
Title: Course of Medically Unexplained Symptoms (MUS) and underlying mechanisms, a long term follow up study: PROSPECTS cohort study.
Author: Barends H, Claassen-van Dessel N, van der Wouden JC, Dekker J, van der Horst HE
Title: Coordination of care when somatic symptoms persist: a patient's perspective.
Author: Barends H, Botman F, Walstock E, Claassen N, van der Wouden H, olde Hartman T, Dekker J, van der Horst H.
Title: Fluctuations in persistent somatic symptoms: a patient perspective.
Author: Barends H, Walstock E, Botman F, de Kruif A, Claassen N, van der Wouden H, olde Hartman T, Dekker J, van der Horst H.
Title: Fluctuations in persistent somatic symptoms: a patient perspective.
Author: Barends H, Walstock E, Botman F, de Kruif A, Claaassen N, van der Wouden H, olde Hartman T, Dekker J, van der Horst H.
Title: Five-year trajectories of symptom severity, physical and mental functioning in patients with persistent somatic symptoms. A Latent Class Growth Model Analysis of the PROSPECTS cohort study.
Author: Barends H, van der Horst HE, van der Wouden JC, Claassen-van Dessel N, Dekker J, Hoekstra T.
Title: Patients’ experiences with the course and fluctuations of persistent physical symptoms: a qualitative study
Author: Barends H, Walstock E, Botman F, de Kruif A, Claassen N, van der Wouden H, olde Hartman T, Dekker J, van der Horst H.
Title: Impact of symptom focusing and somatosensory amplification on persistent physical symptoms: a three-year follow-up study.
Author: Barends H, Claassen-van Dessel N, van der Wouden JC, Twisk JWR, Terluin B, van der Horst HE, Dekker J.
Title: Beloop en mechanismen van Aanhoudende Lichamelijke Klachten (ALK)
Author: Barends H
Title: Potentially traumatic events, social support and symptom burden in patients with persistent somatic symptoms: a longitudinal study.
Author: H. Barends, N. Claassen-van Dessel, J. van der Wouden, J. Twisk, H. van der Horst, J. Dekker
Title: Lost in fragmentation - care coordination when somatic symptoms persist
Author: Barends H, Botman F, Walstock E, Claassen-van Dessel N, van der Wouden JC, Olde Hartman T, Dekker J, van der Horst HE
Magazine: British Journal of General Practice
Start- and endpage: 790-798
Link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9512409/
Title: Potentially traumatic events, social support and burden of persistent somatic symptoms
Author: Barends H, van der Wouden JC, Claassen-van Dessel N, Twisk JWR, van der Horst HE, Dekker J.
Magazine: Journal of Psychosomatic Research
Start- and endpage: 1-12
Link: https://www.sciencedirect.com/science/article/pii/S0022399922002306?via%3Dihub
Title: Patients’ experiences with fluctuations in persistent physical symptoms: a qualitative study
Author: Hieke Barends, Ella Walstock, Femke Botman, Anja de Kruif, Nikki Claassen, Johannes C van der Wouden, Tim olde Hartman, Joost Dekker, Henriette van der Horst
Magazine: BMJ Open
Start- and endpage: 1-8
Link: https://bmjopen.bmj.com/content/10/7/e035833
Title: Patients' experiences with fluctuations in persistent physical symptoms: a qualitative study
Author: Barends H, Walstock E, Botman F, de Kruif A, Claassen N, van der Wouden JC, Olde Hartman T, Dekker J, van der Horst H
Magazine: BMJ Open
Start- and endpage: 1-8
Link: https://bmjopen.bmj.com/content/10/7/e035833.long
Title: Lost in fragmentation — care coordination when somatic symptoms persist: a qualitative study of patients’ experiences
Author: Hieke Barends, Femke Botman, Ella Walstock, Nikki Claassen-van Dessel, Johannes C van der Wouden, Tim olde Hartman, Joost Dekker and Henriëtte E van der Horst
Magazine: British Journal of General Practice
Start- and endpage: 790-798
Link: https://doi.org/10.3399/BJGP.2021.0566
Title: Exploring maladaptive cognitions and behaviors as perpetuating factors in patients with persistent somatic symptoms: a longitudinal study
Author: Hieke Barends, Joost Dekker, Nikki Claassen- van Dessel, Jos W.R. Twisk, Henriette E. van der Horst, Johannes C. van der Wouden
Magazine: Journal of Psychosomatic Research
Start- and endpage: 1-8
Link: https://doi.org/10.1016/j.jpsychores.2023.111343
Title: Head-to-head comparison of somatic symptom scales: The Patient Health Questionnaire (PHQ-15) and the somatization scale of the Four-Dimensional Symptom Questionnaire (4DSQ-S)
Author: Berend Terluin, Hieke Barends, Henriette E. van der Horst, Joost Dekker, Johannes C. van der Wouden
Magazine: Journal of Psychosomatic Research
Start- and endpage: 1-9
Link: https://doi.org/10.1016/j.jpsychores.2022.111031
Title: Nieuw onderzoek naar beloop van SOLK
Author: Barends H
Magazine: Huisarts & Wetenschap
Start- and endpage: 88-88
Title: Five-year trajectories of symptom severity, physical and mental functioning in patients with persistent somatic symptoms: the PROSPECTS cohort study
Author: Hieke Barends, Henriëtte E van der Horst, Johannes C van der Wouden, Nikki Claassen, Joost Dekker, Trynke Hoekstra
Magazine: BMJ Open
Start- and endpage: 1-15
Link: https://bmjopen.bmj.com/content/15/1/e083276
Title: Head-to-head comparison of somatic symptom scales: The Patient Health Questionnaire (PHQ-15) and the somatization scale of the Four-Dimensional Symptom Questionnaire (4DSQ-S)
Author: Terluin B, Barends H, van der Horst HE, Dekker J, van der Wouden JC
Magazine: Journal of Psychosomatic Research
Start- and endpage: 1-9
Link: https://www.sciencedirect.com/science/article/pii/S0022399922003166?via%3Dihub
Title: Impact of symptom focusing and somatosensory amplification on persistent physical symptoms: A three-year follow-up study
Author: Hieke Barends, Nikki Claassen-van Dessel, Johannes C. van der Wouden, Jos W.R. Twisk, Berend Terluin, Henriëtte E. van der Horst, Joost Dekker
Magazine: Journal of Psychosomatic Research
Start- and endpage: 1-8
Link: https://doi.org/10.1016/j.jpsychores.2020.110131
Title: Impact of symptom focusing and somatosensory amplification on persistent physical symptoms: A three-year follow-up study
Author: Barends H, Claassen-van Dessel N, van der Wouden JC, Twisk JWR, Terluin B, van der Horst HE, Dekker J
Magazine: Journal of Psychosomatic Research
Start- and endpage: 1-8
Link: https://pubmed.ncbi.nlm.nih.gov/32473411/
Title: Potentially traumatic events, social support and burden of persistent somatic symptoms: A longitudinal study
Author: Hieke Barends, Johannes C. van der Wouden, Nikki Claassen - van Dessel, Jos W.R. Twisk, Henriette E. van der Horst, Joost Dekker
Magazine: Journal of Psychosomatic Research
Start- and endpage: 1-12
Link: https://doi.org/10.1016/j.jpsychores.2022.110945
Title: Beyond symptoms: Course and mechanisms of persistent somatic symptoms
Author: Hieke Barends
Link: https://research.vu.nl/en/publications/beyond-symptoms-course-and-mechanisms-of-persistent-somatic-sympt

Features

  • Project number:
    839110018
  • Duration: 100%
    Duration: 100 %
    2018
    2025
  • Part of programme:
  • Related funding round:
  • Project lead and secretary:
    van der Wouden
  • Responsible organisation:
    Amsterdam UMC Locatie VUmc

General Practitioner care research

We need more knowledge from research into general practice, and we need to disseminate this knowledge among GPs in order to maintain the current high standards of research and care. We therefore support academicization by funding PhD research projects for GPs training to become clinical researchers.