Objective: The purpose of this survey was to determine the awareness and perception of gastrointestinal (GI) symptoms in patients and caregiving relatives (for simplicity hereunder referred to as caregivers) of patients with Parkinson’s disease (PD) as well as to evaluate to which extent such symptoms are reported to the treating physician.

Background: Several studies have shown that GI disorders are common in PD patients, and that they can significantly impair patients’ quality of life [1]. Importance of this topic is underlined by the fact that aspiration pneumonia and weight loss are significantly more frequent causes of death in patients with PD compared to individuals without neurological diseases [2]. Nevertheless PD patients and caregivers do not seem to link their GI complications with PD. As a result, such complaints are often not reported to the neurologist.

Methods: We conducted an online/paper survey of patients with PD as well as in caregivers of PD patients in Germany. The survey was open for participation for 6 months. The questionnaire included 10 items covering patients´ demographic information as well as awareness and perception of patients and caregivers towards GI symptoms.

Results: 106 patients and 140 caregivers took part in the survey. Asked unprompted, 35.9% of patients reported GI-problems. Inquiry of specific symptoms like dysphagia, heartburn, weight loss and obstipation increased the total number of patients with GI-problems to 81.2%. Prevalence and severity of GI symptoms were evaluated differently by patients and caregivers. For example, weight loss was reported only by 12.3% of patients but by 29.3% of caregivers. The intensity of moderate stomach pain was documented by 4.7% of patients in contrast to 16.4% of caregivers. Only 48.1% of patients and 59.3% of caregivers stated that they had addressed GI symptoms during physician’s consultations.

Conclusions: These findings support the need to ask for specific symptoms of GI disorders such as dysphagia, heartburn, weight loss and obstipation in the history taking of patients in contrast to only asking generally for GI symptoms. GI problems are perceived differently by patients and caregivers. Therefore, it is important to include both patients and caregivers in the evaluation to gain a comprehensive understanding of patient’s PD and the related GI symptoms.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/awareness-and-perception-of-gastrointestinal-symptoms-in-parkinsons-disease-a-survey-of-patients-and-caregiving-relatives/