A mixed-methods study to explore the modifiable aspects of treatment burden in Parkinson’s disease and develop recommendations for improvement

by Qian Yue Tan, Kinda Ibrahim, Helen C. Roberts, Khaled Amar, Simon D.S. Fraser

Background

People with Parkinson’s (PwP) and their caregivers have to manage multiple daily healthcare tasks (treatment burden). This can be challenging and may lead to poor health outcomes.

Objective

To assess the extent of treatment burden in Parkinson’s disease(PD), identify key modifiable factors, and develop recommendations to improve treatment burden.

Methods

A mixed-methods study was conducted consisting of: 1) a UK-wide cross-sectional survey for PwP and caregivers using the Multimorbidity Treatment Burden Questionnaire (MTBQ) to measure treatment burden levels and associated factors and 2) focus groups with key stakeholders to discuss survey findings and develop recommendations.

Results

160 PwP (mean age = 68 years) and 30 caregivers (mean age = 69 years) completed the surveys. High treatment burden was reported by 21% (N = 34) of PwP and 50% (N = 15) of caregivers using the MTBQ. Amongst PwP, higher treatment burden was significantly associated with advancing PD severity, frailty, a higher number of non-motor symptoms, and more frequent medication timings (>3 times/day). Caregivers reporting higher treatment burden were more likely to care for someone with memory issues, had lower mental well-being scores and higher caregiver burden. Three online focus groups involved 11 participants (3 PwP, 1 caregiver and 7 healthcare professionals) recruited from the South of England. Recommendations to reduce treatment burden that were discussed in the focus groups include improving communication. clear expectation setting, and better signposting from healthcare professionals, increasing education and awareness of PD complexity, flexibility of appointment structures, increasing access to healthcare professionals, and embracing the supportive role of technology.

Conclusions

Treatment burden is common amongst PwP and caregivers and could be identified in clinical practice using the MTBQ. There is a need for change at individual provider and system levels to recognise and minimise treatment burden to improve health outcomes in PD.

The BrainWaves study of adolescent wellbeing and mental health: Methods development and pilot data

by Ryan D. Parsons, Sarah Bauermeister, Julian Turner, Natalie Coles, Simon Thompson, Emma Squires, Tracey Riseborough, Joshua Bauermeister, Abbie Simpkin, Naomi French, Shankly Cragg, Hazel Lockhart-Jones, Olly Robertson, Abhaya Adlakha, Ian Thompson, John Gallacher

Adolescent mental health and wellbeing are of growing concern globally with increased incidence of mental health disorders in young people. BrainWaves provides a framework for relevant and diverse research programmes into adolescent mental health and wellbeing that can translate into practice and policy. The research programme is a partnership with schools centred on establishing a large (n > 50,000) cohort and trials platform. Reported here is the BrainWaves cohort pilot study. This was designed as proof-of-concept for our recruitment and data capture pipelines, and for cost-modelling. A network of research schools was recruited and a computer-driven questionnaire administered. The eligible population was 16 + year olds who were attending the research schools. Of 41 research schools, 36 (88%) participated over one three-week and one four-week data collection period. From an eligible population of 33,531 young people, 16,010 (48%) attended the study lesson and created an account. Of the 16,010 (100%) who created an account, 15,444 (96%) consented to participate, 9,321 (60%) consented to linkage of research data with educational records, and 6,069 (39%) consented to linkage of research with school/college attendance data. Participants were aged 16–19 years, 59% female, and 76% White. Higher levels of anxiety and depression were found in females than males. Higher levels of media-based social networking were found in females, whereas higher levels of media-based gaming were found in males. Females were more likely to report insufficient sleep whilst males were more likely to report high levels of exercise. This study confirmed an ability to recruit at pace and scale. Whilst the response-rate does not indicate a representative sample, the demographics describe an inclusive and diverse sample. Data collected confirmed findings from previous studies indicating that the electronic data collection methods did not materially bias the findings. Initial cost-modelling suggests these data were collected for around £20 per participant.