PD HELP (Phases 3 & 4)
Research type
Research Study
Full title
Development of an intervention to increase help-seeking for non-motor symptoms in people with Parkinson's
IRAS ID
193333
Contact name
Lorna Rixon
Contact email
Sponsor organisation
City University London
Duration of Study in the UK
0 years, 8 months, 21 days
Research summary
Development of an online intervention to increase help-seeking for non-motor symptoms in people with Parkinson’s
Background
Non-Motor Symptoms (NMS), such as sleep problems, bowel and bladder problems and sexual dysfunction, are common among people with Parkinson’s and cause significant distress resulting in reduced quality of life. However research has demonstrated that up to 65% of patients do not report NMS to their Neurologist. Consequently patients may be unnecessarily experiencing potentially treatable symptoms. The reasons for this lack of symptom reporting were systematically explored in an interview study (phase 1) and questionnaire survey (phase 2). The next stages of this programme of research are to develop (phase 3) and examine the feasibility (phase 4) of an online intervention to overcome the barriers to symptom reporting identified in phases 1 and 2.Study design
Phase 3
To support the development of the intervention think aloud interviews will be conducted with 10 participants with Parkinson’s while they complete the intervention to ensure that it is acceptable and easy to understand and use.
Phase 4
30 patients with Parkinson’s attending neurology outpatient clinics will be recruited to trial the online intervention. Eligible participants will be experiencing at least one undisclosed burdensome NMS. Participants will be asked to complete pre and post intervention questionnaires about their Parkinson’s and seeking medical advice. They will complete the online, individualised, self-paced intervention two weeks prior to their scheduled neurology outpatient appointment. The intervention will contain modules targeting specific barriers to help-seeking including such topics as: communication skills, talking about personal issues and action plans for help-seeking.The main outcome will be symptom reporting at clinic visit.Recruitment
Phase 3
Participants will all be members of the existing project advisory group.
Phase 4
Participants will be recruited from neurology outpatient clinics at King’s College Hospital and Lewisham Hospital.This study is funded by Parkinson’s UK
REC name
Wales REC 7
REC reference
16/WA/0033
Date of REC Opinion
25 Feb 2016
REC opinion
Further Information Favourable Opinion