Preferences for the Role in Making Treatment Decisions: A Comparison between Patients and Patient Advocates in the Neuroendocrine Cancer Population
Year: 2020
Type: dissertation
Study design: Observational Study
Abstract: Background: Patient engagement has become a common focus for healthcare organizations in the last decade and is a priority in Canadian healthcare policies and research strategies. Objectives: The objective of this thesis was 1) to examine the association between the preferred role in treatment decisions that adult patients and patient advocates with a rare cancer, neuroendocrine (NETs), wish to play in their care, and 2) to test the hypothesized relationship with ehealth literacy, trust in physician, information seeking behaviours and sociodemographic variables within and across both groups (patients and patient advocates). Design: A cross-sectional survey design was used to measure preferred roles in problem solving and decision-making. Methods: Preferred roles were measured across two health vignettes: ‘current health condition’ and ‘chest pain’. Bivariate analysis was conducted to determine associations between socio-demographic variables and preferences for problem solving (PS) and decision-making (DM). PS is preference-independent and relates to tasks in determining the nature of the problem, structuring the decision tree and determining probabilities, such as who should determine the risks and benefits of different treatment options. Conversely, DM tasks relate to determining patient preferences (including risk attitude) and making the decision, considering what matters to you as an individual. Associations between the eHealth literacy score, Trust-in-Physician score, information seeking behaviour and continuous socio-demographic variables were calculated. Results: There were significant differences between preferred roles and trust in the physician and whether a participant was a patient or a patient advocate. There are three main categories of preferred roles: passive, shared and autonomous. The results of this research showed that most patients preferred a passive or shared-leaning passive role, had a high level of perceived health information literacy, and had high levels of trust in their physician. Patient advocates more often preferred a shared role, had a lower trust in their physician and lower perceived ehealth literacy compared to patients. Results of the binary logistic regression showed that trust in the physician predicted respondents of both groups’ preferred roles for both vignettes; chest pain and neuroendocrine treatment decisions. Conclusion: This study provides new knowledge that advances the understanding of the association of preferred roles of problem solving and decision-making for patients as well as patient advocates with a rare cancer.
Source: TSpace (University of Toronto)
Author: Lesley Moody
Language: English
Subfield: General Health Professions
Field: Health Professions
Domain: Health Sciences
Open Access status: green
OpenAlex ID: W3143891326