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'I still can't forget those words': mixed methods study of the persisting impact on patients reporting psychosomatic and psychiatric misdiagnoses.

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Peer-reviewed

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Abstract

OBJECTIVES: This research aimed to improve understanding of persisting impacts of patient-reported psychosomatic and psychiatric misdiagnoses on patients with systemic autoimmune rheumatic diseases (SARDs). METHODS: Mixed methods data from two SARDs cohorts were analysed (N = 1543 and N = 1853). Validated instruments and patient-designed questions were used to measure self-reported depression, anxiety and mental wellbeing, in addition to medical relationships and healthcare behaviours. Comparative tests were used to evaluate differences between patients reporting psychosomatic and/or psychiatric misdiagnoses and other patients. RESULTS: Persisting adverse outcomes of perceived psychosomatic and psychiatric misdiagnoses were identified in multiple domains. This included >80% of patients reporting that it had damaged their self-worth, and 72% reporting that it still upset them. Patients reporting psychosomatic and/or psychiatric misdiagnoses had significantly lower mental wellbeing, and higher depression and anxiety levels (all P < 0.001), and lower levels of satisfaction with every aspect of medical care, compared with patients reporting no psychosomatic or psychiatric misdiagnoses. Psychosomatic and psychiatric misdiagnoses had varying associations with healthcare behaviours, including a significantly higher likelihood of under-reporting symptoms (P < 0.001) and healthcare avoidance (P = 0.012), but not with medication adherence (P = 0.2). Thematic analysis of qualitative data revealed that symptom under-reporting and healthcare avoidance often resulted from distrust and fear that symptoms would be disbelieved and misattributed again. CONCLUSION: Patient-reported psychosomatic and psychiatric (mis)diagnoses are associated with persisting adverse impacts in multiple domains including mental health, medical relationships, self-worth, and some healthcare behaviours. Health services and clinicians should consider these potential adverse impacts on patients and offer support to reduce any persisting negative impacts.

Description

Acknowledgements: We would like to give our great thanks to all the patients and clinicians who contribute to our studies both by being participants and by advising us on their priorities and supporting our research. In addition, we would like to thank the SARD charity staff who collaborate with us to design research to raise awareness and to improve patient lives. With particular thanks to LUPUS UK and The Lupus Trust who funded these studies, and to Professor Duschinsky for advising on attachment theory. T.A.P. was supported by the National Institute for Health Research (NIHR) Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King’s College London. The views expressed are those of the study participants and/or author(s) and not necessarily those of the NHS, the funders, the NIHR or the Department of Health and Social Care.


Funder: LUPUS UK; doi: https://doi.org/10.13039/501100018817


Funder: The Lupus Trust


Funder: Cambridge University; doi: https://doi.org/10.13039/501100000735


Funder: National Institute for Health Research; doi: https://doi.org/10.13039/501100000272


Funder: Biomedical Research Centre; doi: https://doi.org/10.13039/100014461


Funder: South London and Maudsley


Funder: NHS Foundation Trust


Funder: King’s College London


Funder: NHS; doi: https://doi.org/10.13039/100030827


Funder: Department of Health and Social Care; doi: https://doi.org/10.13039/501100000276

Journal Title

Rheumatology (Oxford)

Conference Name

Journal ISSN

1462-0324
1462-0332

Volume Title

64

Publisher

Oxford University Press (OUP)

Rights and licensing

Except where otherwised noted, this item's license is described as https://creativecommons.org/licenses/by/4.0/