Information-giving practices of Parkinson’s Disease specialists in Ireland versus information preferences of people living with Parkinson’s: A mixed-methods approach

Abstract Background People with Parkinson’s disease (PwP) tend to seek varying degrees of information about Parkinson’s disease (PD) and its management. As accessing accurate information can be a barrier to self-management, healthcare professionals play a key role in providing evidence-based information and signposting people to services and support organisations. This study aims to explore how the information needs and preferences of PwP compare with the information dissemination practices within Specialist PD/Movement Disorder Services in the Republic of Ireland. Methods A mixed-methods design was employed, comprising i) an online survey (N=119) of PwP and ii) semi-structured qualitative interviews with PD specialists (N=16). Eligible survey participants were English-speaking adults attending a specialist PD clinic, resident in Ireland, with a formal PD diagnosis in the last five years. The survey used crowdsourcing and snowball sampling. Purposive sampling was used to recruit PD specialist clinicians for interview. Survey data were analysed using Excel, with thematic analysis applied to interview data. Results For respondents (55% male, 30% aged 60+), satisfaction was highest for medication-related information (84%) followed by mental health information (82%) and information about PD symptomatology (80%). Most (77%) were satisfied with the information provided on PD management and treatments. Respondents who reported receiving ‘too little’ information (43%) almost equalled those reporting ‘too much’ (42%) information. Thematic analysis of PD specialists’ information-giving practices identified five themes: ‘Tailored Information’; ‘Initial Focus on Medication Management’; ‘PwP empowerment’; ‘Specific Resources’; and ‘Support Networks’. Conclusion Despite higher satisfaction levels among PwP regarding information received compared to other studies, one-in-five were dissatisfied. Tailored information from specialists could be improved with standardised resources across PD clinics, thus helping patients gain a sense of autonomy in managing their symptoms.