Development of an online intervention to increase help-seeking in Parkinson’s disease

Abstract

Background: Patients with Parkinson’s disease (PD) frequently experience non-motor symptoms (NMS) (e.g. sleep, bladder, or bowel problems, sexual dysfunction) which significantly impact upon quality of life. Up to 65% of patients do not report these symptoms to healthcare professionals. Barriers to help-seeking were explored in previous research using the Theoretical Domains Framework (TDF). The present study aims to develop and test the feasibility of an individualised online intervention using Lifeguide to empower patients to report these symptoms to neurologists. Methods: A pre-post intervention design will be used. 30 PD patients with undisclosed NMS will be recruited. Participants will complete online questionnaires measuring NMS (NMSQuest), help-seeking (GHSQ and AHSQ), PD severity (PADL) and intervention acceptability. Descriptive data will be presented including the proportion of patients self-reporting help-seeking post-intervention. Expected results: The results will provide an estimate of the proportion of patients help-seeking post-intervention, testing the validity of self-reported help-seeking by comparing patient self-report with clinical notes, ascertaining completion rates of the intervention and online questionnaires, and determining the proportion of patients who fail to attend their neurology clinic appointment. Current stage of work: Ethical approval has been granted. The intervention is currently under development. Appropriate Behaviour Change Techniques are being selected to target the theoretical domains that act as barriers to help-seeking. Discussion: This research represents a new application of the TDF in the development of help-seeking interventions. The individualised nature of the intervention targeting barriers specific to each patient may provide new insights into the development of effective help-seeking interventions.