The development and piloting of a discrete choice experiment to measure the support preferences of people with chronic respiratory diseases in Ireland

Introduction: Healthcare systems are increasingly developing self-management support (SMS) frameworks to reduce the burden of chronic disease. This involves a whole-system approach which enables the person with chronic disease to actively participate in managing their wellbeing. A framework to support the implementation of SMS was launched in Ireland, with asthma and COPD among the chronic diseases targeted. As this framework is being implemented in Ireland, there is a need to ensure that patient preferences are considered. Aim: to examine the SMS preferences of people with asthma and/or COPD in Ireland through the development and piloting of a discrete choice experiment (DCE). Methods: Early work in the thesis identified and explored eight frameworks for SMS of chronic disease developed by national/state level health systems in different countries. Subsequently, a qualitative study was conducted with the implementation leads of three frameworks. This research indicated that greater input of people with chronic disease was important to advance SMS. Steps were taken to develop a DCE to measure the relative importance of support features from the perspectives of people with asthma/COPD in accordance with good practice. Firstly, a systematic review and thematic synthesis of qualitative studies was conducted in order to inform the attributes of the DCE. Secondly, a qualitative descriptive study using interviews and focus groups was conducted with people with asthma/COPD in Ireland (n = 20), 10 of whom had asthma. The qualitative literature along with clinical and methodological considerations informed the design of the DCE. The DCE was refined through cognitive interviews (n = 16). A pilot study was conducted (n = 38) and a multinomial logit model was used to examine the strength and direction of preferences. Findings: Fifteen articles were included in the thematic synthesis and three themes were identified: types of support, the support relationship and accessibility. Similar themes were identified in the qualitative descriptive study. In terms of accessibility, participants highlighted the need for both scheduled and flexible unscheduled access to support from providers with specialist knowledge. They valued comprehensive and person-centred consultations and a person-provider relationship which facilitated patient input and was characterised by continuity over time. A DCE which focused on support in managing symptoms of an asthma flare-up was developed where participants made choices between services that differed on six attributes. Pilot study data indicated that having a provider that listens to the patient’s concerns was most important when experiencing symptoms that may lead to an asthma flare-up. Specialist providers who can be accessed face-to-face on the same day as contacted and have previous knowledge of the patient’s history were also valued. Having a written plan to manage changes was less valued. Conclusions: The implementation of frameworks on SMS for chronic disease requires long-term buy-in from stakeholders and increased consultation with patients and providers. Qualitative research with people with asthma/COPD illuminated valued features of support such as communication and continuity in the patient-provider relationship that warrant greater attention in SMS interventions. The findings of the DCE pilot study need to be verified through conducting a study with adequate power to compare preferences across groups and to use more advanced models to account for preference heterogeneity. The findings suggest a model of support which includes timely, face-to-face access to a healthcare professional that knows the patient and fully listens to their concerns for managing symptoms of an asthma flare-up.

Grantor dc:publisher

University College Cork

Year dc:date.issued

2020

Author dc:creator

• O'Connell, Selena

Advisors dc:contributor.advisor

• Savage, Eileen
• Mc Carthy, Vera
• Murphy, Des

• COPD
• Asthma
• Self-management support
• Chronic disease
• Patient preferences
• Policy implementation

Statement dc:rights

• © 2020, Selena O'Connell.

Licence dc:rights.uri

• https://creativecommons.org/licenses/by-nc-nd/4.0/

Language dc:language.iso

en

Handle dc:identifier.uri

https://hdl.handle.net/10468/11382

OAI identifier oai:identifier

oai:cora.ucc.ie:10468/11382