Objectives: To assess subjective swallowing difficulties (SD) with medication intake and their practical consequences in patients suffering from systemic sclerosis (SSc) with a novel self-report questionnaire.
Design and setting: Based on a systematic literature review, we developed a self-report questionnaire and got it approved by an expert panel. Subsequently, we sent the questionnaire by post mail to SSc patients of the European Center for the Rehabilitation of Scleroderma Rheinfelden, Switzerland.
Participants: Patients were eligible if they were diagnosed with SSc, treated at the center, and were of age ≥18 years at the study start.
Main outcome measures: Prevalence and pattern of SD with oral medication intake, including localization and intensity of complaints.
Results: The questionnaire consisted of 30 items divided into five sections Complaints, Intensity, Localization, Coping strategies, and Adherence. Of the 64 SSc patients eligible in 2014, 43 (67%) returned the questionnaire. Twenty patients reported SD with medication intake (prevalence 47%), either currently (11; 26%) or in the past that had been overcome (9; 21%). Self-reported SD were localized mostly in the larynx (43%) and esophagus (34%). They were of moderate (45%) or strong to unbearable intensity (25%). Modification of the dosage form was reported in 40% of cases with SD. Adherence was poor for 20 (47%) patients and was not associated with SD (p=0.148).
Conclusion: Our novel self-report questionnaire is able to assess the pattern of complaints linked to medication intake, that is, localization and intensity. It may serve as a guide for health care professionals in selecting the most suitable therapy option, enabling tailored counseling to reduce inappropriate medication modifications.
Keywords: coping behavior; deglutition disorders; medication intake; self-report questionnaire; swallowing difficulties; systemic sclerosis.