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Parkinsonism Relat Disord. 2019 Apr 20. pii: S1353-8020(19)30209-3. doi: 10.1016/j.parkreldis.2019.04.014. [Epub ahead of print]

Barriers to reporting non-motor symptoms to health-care providers in people with Parkinson's.

Author information

1
Centre for Health Services Research, School of Health Sciences, City, University of London, EC1R 1UW, London, UK. Electronic address: Catherine.hurt.1@city.ac.uk.
2
Centre for Health Services Research, School of Health Sciences, City, University of London, EC1R 1UW, London, UK. Electronic address: Lorna.rixon.1@city.ac.uk.
3
King's College London, Institute of Psychiatry, Psychology and Neuroscience, De Crespigny Park, Denmark Hill, SE5 8AF, London, UK; King's College Hospital NHS Foundation Trust, National Parkinson's Foundation International Centre of Excellence, Denmark Hill, London, SE5 9RS, UK. Electronic address: Ray.chaudhuri@nhs.net.
4
King's College London, Institute of Psychiatry, Psychology and Neuroscience, De Crespigny Park, Denmark Hill, SE5 8AF, London, UK. Electronic address: rona.moss-morris@kcl.ac.uk.
5
King's College Hospital NHS Foundation Trust, National Parkinson's Foundation International Centre of Excellence, Denmark Hill, London, SE5 9RS, UK; East Kent Hospitals University NHS Foundation Trust, Ashford, Kent, TN24 0LZ, UK. Electronic address: m.samuel@nhs.net.
6
King's College London, Institute of Psychiatry, Psychology and Neuroscience, De Crespigny Park, Denmark Hill, SE5 8AF, London, UK; South London and Maudsley NHS Foundation Trust, London, SE5 8AZ, UK. Electronic address: Richard.g.brown@kcl.ac.uk.

Abstract

BACKGROUND:

Non-motor symptoms (NMS) are common in Parkinson's disease (PD) and cause significant distress. A high rate of non-declaration of NMS by patients to healthcare providers (HCP) means that many NMS remain untreated. Current understanding of the factors preventing disclosure of NMS to HCPs is limited. The present study aimed to i) further assess the prevalence of NMS and associated distress, ii) establish current rates of NMS reporting across a range of sources, and iii) explore overall and any symptom specific barriers to help-seeking for NMS.

METHODS:

358 PD patients completed a cross-sectional survey of NMS severity, reporting and barriers to help-seeking. A series of Generalised Estimating Equations were used to determine whether barriers were symptom specific.

RESULTS:

A mean of 10.5 NMS were reported by each patient. Rates of non-reporting of NMS ranged from 15 to 72% of those experiencing distressing symptoms. The most commonly reported barriers to help-seeking were acceptance of symptoms; lack of awareness that a symptom was associated with PD, and belief that no effective treatments were available. Symptom specific barriers were found for sexual dysfunction (embarrassment), unexplained pain and urinary problems (belief about lack of treatment availability).

CONCLUSION:

A diverse range of barriers prevent PD patients reporting NMS to HCPs and these barriers differ between NMS. The study provides the foundations for developing interventions to increase reporting by targeting individual NMS. Increasing rates of help-seeking for NMS by patients to their Parkinson's healthcare providers will increase appropriate clinical care which may improve quality of life and well-being.

KEYWORDS:

Barriers; Help-seeking; Non-motor symptoms; Parkinson's disease

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