Structure
From the outset of this Patient and Public Involvement (PPI) exercise we decided to adopt elements of the Delphi technique to guide the development of consensus. The purpose of the meeting was to bring together relevant stakeholders to identify and prioritise psychological and behavioural interventions which may improve non-motor symptoms. Using guidance from the Delphi technique helped us to collect stakeholders’ feedback in a more systematic way. The Delphi technique is an iterative survey exercise with controlled feedback to a group of panellists [22]. The ‘panellists’ are purposively invited for their particular expertise on a topic and the surveys are often conducted across a series of two or more sequential ‘rounds’. In the current prioritisation exercise, two rounds of surveys were used; one before and one following the panel discussion. The structure of the process is outlined in Fig. 1.
We brought together a range of key stakeholders: people with Parkinson’s, psychological and behavioural researchers specialising in Parkinson’s, and healthcare professionals working in Parkinson’s. Bringing together all interested parties in a single day meeting allowed dialogue between individuals and the sharing of perspectives to ensure that decisions regarding the final research priorities were collaborative.
Stage 1: identifying experts for the exercise ‘the panel’
Turoff [23] recommends panels between 10 and 50. Ten people with Parkinson’s and ten health professionals (geriatrician, psychologists, PD nurses, physiotherapist, occupational therapist, speech therapist) initially agreed to take part in the exercise. The health professionals, whose expertise was based on qualifications and proven track records in the field, were identified through peer consultation and invited via email by the authors. People with Parkinson’s and carers were invited by Parkinson’s UK through an email to their Research Network mailing list.
Stage 2: generate list of non-pharmacological interventions
The initial list of non-pharmacological interventions for the first round survey was developed from literature reviews in PD and similar conditions conducted by two authors (AB and LR) who specialise in behavioural interventions in PD. Due to resource constraints the panellists were not consulted in this initial idea generation phase for salient non-pharmacological interventions to include in the survey.
Stage 3: survey round 1
The survey rounds were completed using the online tool Survey Monkey [24]. The survey asked panellists to rank the importance of each suggested non-pharmacological intervention for each of the non-motor symptoms identified as research priorities in the Parkinson’s UK prioritization exercise: stress and anxiety, dementia, mild thinking and memory problems, sleep and urinary problems) [1]. A short explanation of each intervention was provided for clarity. Panellists were asked to rank the interventions into order of treatment priority with 1 = highest treatment priority using a drop-down menu. Respondents were then instructed to keep assigning numbers to each treatment until they were sure that the treatment would not help for the symptom. Unhelpful treatments were not assigned a number in the ranking. A screen shot of the treatment ranking exercise is shown in Fig. 2.
Stage 4: the panel discussion in-between survey rounds
The panel discussion was facilitated by the first and second author. All members of the panel were made aware of the background of the two facilitators, i.e. health psychology researchers in the area of non-pharmacological treatments in PD and were also made aware of their interest, i.e. identify research priorities for future research grant applications. Respondents were aware of the topic of the discussion and had already taken part in the survey that the discussion was based on. No other preparation was required prior to the meeting. The panel discussion included eight people with Parkinson’s, and eight health professionals. The discussion started with a short presentation on the most prevalent non-motor symptoms, followed by our suggestions for non-pharmacological interventions, followed by the ranking results of the first-round survey. The non-motor symptom priorities focused on during the workshop were: stress and anxiety, dementia, mild cognitive problems, quality of sleep, urinary problems. For each of these categories, panellists were asked to discuss:
What behavioural and psychological management interventions are available?
What is the research evidence and your personal experience with management of these non-motor symptoms?
Which behavioural and psychological management interventions do you consider as the highest priorities?
The group discussed preferences in terms of types of psychological and behavioural interventions for non-motor symptoms in Parkinson’s, as well as the mode of delivery, that best suits people with Parkinson’s and how likely these interventions were to be translated into clinical practice. Current clinical practices in Parkinson’s were also discussed and how potential interventions on specific non-motor symptoms could be added to current common practice.
The group then prioritised interventions for research based on potential intervention efficacy, acceptability, need and translation into clinical practice. After discussing specific treatments, the facilitators asked the group which non-pharmacological intervention they consider the most important and promising. One of the panellists kept notes on a white board as people offered suggestions and thoughts. This discussion largely focused on one specific intervention and the facilitators summarised and confirmed with the group that this intervention should be prioritised.
Stage 5: survey round 2
Following the panel discussion, the first-round survey was refined by adding interventions not previously included and narrowing down the available intervention options for each non-motor symptom. We removed interventions with very low rankings at the first survey or interventions that were not considered appropriate based on the panel discussion. For example, we added ‘peer group support’ under ‘anxiety’ and removed ‘acceptance and commitment therapy’ under ‘sleep’. A question about mode of delivery preferences was also added.
For the second-round survey we asked the panel to re-rate the interventions suggested for each non-motor symptom and emailed the survey to Parkinson’s UK Research Network members. Thirteen people with Parkinson’s responded to the survey, two of whom had attended the workshop.
Ethics
The goal of the exercise was to gather information to direct future research using Public and Patient Involvement. According to NIHR INVOLVE guidelines ethical approval is not needed when the public acts as specialist advisors, providing expertise based on their experience of a health condition in planning or advising on research. Prior published research priority setting exercises have also suggested that ethical approval is not required [1]. It was assumed that the ability to complete the online surveys suggested that the respondents had capacity to consent in the exercise. No incentives were offered to respondents but all travel expenses were reimbursed.