Abstract
Patient engagement in setting research priorities may guide a clinical research program to ensure relevance to the target population. In this cross-sectional survey, people who had participated in pulmonary rehabilitation were asked to prioritize research topics relevant to this area. Twenty-four previously identified topics were presented under 7 themes. Respondents were asked to select all themes and topics of importance, and then to rank them in order of importance. Ninety-six responses were included. The top ranked topic in the top ranked theme was creating an after-maintenance program to keep patients on track.
Introduction
In keeping with the national Strategy for Patient Oriented Research (SPOR) (1), academic centres have increased patient engagement when setting research agendas. Meaningful and active collaboration in priority setting (1) has the potential to broaden a research progam (2) to result in projects that are more relevant and directly related to patient needs (2, 3). In addition to identifying patients’ research priorities, engaging patients as active partners in research may improve study recruitment as well as implementation and dissemination of study results (2, 3). When patients feel heard, valued and empowered, they may develop a more open attitude toward research (2). In turn, the research community increases its understanding of the patients’ perspectives and lived experiences (2). Discrepancies between the research priorities of patients and experts have been identified and highlight the importance of meaningful consultation with patients as a part of setting the research agenda and planning studies (4, 5).
Previous reports of patient-identified research priorities related to chronic lung disease have indicated that knowledge of the origins of the disease, new and more effective treatments, understanding comorbidities, self-management strategies, and the relief of breathlessness were among the top priorities (6,–8). Given that participants in pulmonary rehabilitation (PR) have more experience with supervised exercise training, education, self-management, and psychological and social support, they may identify research priorities beyond those related to their general condition. However, there is no information regarding priority setting among those experienced in this area.
Our team recently conducted modified Nominal Group Technique (9) (NGT) meetings with a convenience sample of 14 participants who had completed PR. During these meetings, participants identified twenty-five topics of importance to them through silent, independent generation of ideas, open discussion amongst participants and clarification of meaning, and ranking of ideas (10). The purpose of this study was to extend these observations to a larger cohort of program participants and prioritize the patient-generated research topics identified in our earlier work.
Methods
This cross-sectional survey study received ethics approval from the Joint West Park Healthcare Centre/ Salvation Army Toronto Grace Health Centre Research Ethics Board (#19-005-WP).
Participants
Individuals were eligible to participate in this study if they had attended either inpatient or outpatient PR at West Park Healthcare Centre, in the previous 5 years.
Procedures
The twenty-five topics that were identified and prioritized in the previous NGT meetings were condensed into 24 topics as two groups had prioritized the same topic. Two authors SO and LE discussed ways to group the topics, for example by program component such as exercise, education or self-management, or by program timing such as pre-program, during rehabilitation, on discharge and post-discharge. We then grouped the 24 prioritized topics into themes generated through qualitative content analysis (11). We independently read and condensed transcripts, cross-referencing the prioritized topics with the transcripts to extract clarifying quotations. We individually coded topics by assigning relevant words to each topic (e.g., motivation, coping, or symptoms) and then discussed the assigned codes to reach consensus. Finally, we jointly grouped the topics into themes based on the codes that each topic had been assigned. Using these themes and topics of importance, we then created a survey using Qualtrics (Qualtrics, Provo, UT) in which respondents were requested to rank all themes and all topics within each theme from most to least important. The survey was piloted on a group of 18 respondents, some of whom had been involved in the NGT meetings. Some modifications were made to the survey. An example of how to rank items was provided and questions were added requesting respondents to select all themes and topics that they thought were important (see Appendix 1 for final survey).
In order to target patients who had participated in our PR programs, an email was sent to all current maintenance program participants with a link to the Qualtrics survey. Respondents could also request a hard copy survey if they preferred. We subsequently expanded our recruitment efforts by mailing a hard copy of the survey to all PR patients who had agreed to be contacted by our research team between 2016 and 2021. The first question of the survey asked if respondents agreed to be part of the study by completing the survey. Consent to participate was considered to have been obtained if respondents answered ‘yes’ to the first question and subsequently returned the survey (using the enclosed pre-addressed pre-paid envelopes) with partial or complete responses. Survey responses were anonymous; participants were asked to indicate their age, gender, respiratory diagnosis, and the year that they last attended the PR program.
Statistical Analysis
Surveys with at least one completed question beyond demographics were included. Means and standard deviations or frequencies and percentages were calculated for all participant characteristics. Frequencies and percentages were calculated to determine the themes most frequently selected as important and to identify the topic most frequently prioritized within each theme. Data analysis was completed using Microsoft® Excel Version 15.31 for Mac (Microsoft Corporation, Redmond, WA).
Results
We contacted 57 patients by email and 582 by mail; between the two recruitment methods, 106 surveys were returned of which 96 (15% of the total initial pool) had at least one completed question and were included in this analysis. See Figure 1 for reasons for exclusion. Participants were older adults with a mean age of 73.5 (SD 8.9) years. The majority were female (56%), had a respiratory diagnosis of COPD (76%) and had participated in PR prior to 2020 (59%).
Flow chart of recruitment and responses.
The seven themes in the order of the frequency with which they were selected as important by our survey respondents, as well as the topic ranked first in priority within each theme by the majority of participants, are presented in Table 1. The top three themes in order of frequency were: 1) having regular check-ups to check progress both during and after the programs (the top ranked topic in this theme was creating an after-maintenance program); 2) having more individualized treatments including different education and exercises for people with different diagnoses or those with additional issues, such as balance problems (the top ranked topic in this theme was extending the length of the program for people who need more time); and 3) receiving more information regarding coping with their disease and symptoms outside of the hospital setting (the top ranked topic in this theme was strategies for managing shortness of breath and anxiety outdoors in the humidity, cold, wind and smog).
Themes Selected as Important and Topics Prioritized by Participants.
Three respondents did not answer this question (Question 8) and as such the denominator used is 93.
Some respondents misunderstood the instructions that asked them to prioritize topics from first to last and instead ranked each one on a Likert-type scale, resulting in multiple topics being given the same number. This, as well as the varied number of topics per theme, resulted in variation in the number of participants identifying the most important topic.
The majority of participants (85%) totally agreed that asking PR patients about their research priorities was important and 35% of respondents added additional comments at the end of the survey. Almost half of the comments related to topics that had already been identified in the NGT meetings, 15 of which had been prioritized and included in the survey. The other 17 comments related to other aspects of education and specific experiences related to program delivery (see Appendix 2).
Discussion
In keeping with the recommendations of the Strategy for Patient Oriented Research (1), it is important to involve patients in developing research questions, defining research objectives, collecting data and evaluating results, to confirm that projects are consistent with their stated priorities. This study generated a list of topics that post-PR patients identified as priorities for PR research. More than 80% of respondents selected regular check-ups to check progress, including after discharge from a maintenance program as an important theme and within that theme, the topic ranked in first in terms of importance was creating an after-maintenance program to keep people on track.
The PR programs at our centre run for 6 (inpatient) to 10 (outpatient) weeks and upon discharge patients are offered participation in a weekly maintenance program for up to 6 months. They are then seen at least bi-annually in our respiratory clinic. Despite this extended treatment, participants in this study highlighted the need for longer programs, increased follow-up, and the provision of more resources to keep them on-track after discharge. While the optimal duration of PR is unclear, there is some evidence that longer duration programs offer greater benefit (12, 13) but the evidence for formal maintenance programs is limited as a result of studies having a high risk of bias and small sample sizes (14). While a goal of maintenance is to provide some additional motivation and accountability to patients, it may be that the extended treatment becomes relied upon and patients are less able to self-manage their conditions.
Limitations
The topics in this study were generated and prioritized by former and current participants of PR at a single centre (West Park Healthcare Centre in Toronto, Canada) and may not necessarily be generalizable to other centres. As specific research projects were not presented, inevitably some individuals chose personal program priorities based on their experiences rather than priorities for clinical research. This was not unexpected, but we wished to retrieve as broad as possible a group of clinical issues based on user experience prior to considering which would lend themselves to research design and which would be compatible with the views of other stakeholders and local resources.
Conclusion
Patients who previously completed PR prioritized ongoing assessment and treatment and more support in coping outside of the hospital setting as the most important topics for PR research. The theme selected as the top priority by the majority of respondents was having regular check-ups to check progress both during and after the programs. Within that theme, the top ranked topic was “creating an after-maintenance program to keep people on track”. This highlighted the desire for ongoing assessment and treatment as well as the need to determine the optimal training duration and sustainable methods for long-term maintenance. Our respondents’ input provides a valuable patient perspective on topics for ongoing clinical research and knowledge translation. It should be considered together with the perspectives of healthcare professionals and other stakeholders to ensure that the research conducted is consistent with the priorities of all involved.
Supplemental Material
sj-docx-1-jpx-10.1177_23743735221107244 - Supplemental material for Patient Priorities for Pulmonary Rehabilitation Research
Supplemental material, sj-docx-1-jpx-10.1177_23743735221107244 for Patient Priorities for Pulmonary Rehabilitation Research by Sachi O’Hoski, Cindy Ellerton, Lauren Ellerton and Dina Brooks, Roger Goldstein in Journal of Patient Experience
Footnotes
Acknowledgments
This work was supported by the West Park Foundation. The funder had no role in study design, data collection, analysis and interpretation of data, writing of the report or decision to submit the paper for publication.
Conflicts of Interest
None to declare.
Ethical Approval
Ethical approval was obtained from the Joint West Park Healthcare Centre/ Salvation Army Toronto Grace Health Centre Research Ethics Board (#19-005-WP).
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the West Park Foundation,
Statement of Informed Consent
Written informed consent was obtained from the patient(s) for their anonymized information to be published in this article.
Statement of Human and Animal Rights
All procedures in this study were conducted in accordance with the Joint West Park Healthcare Centre/ Salvation Army Toronto Grace Health Centre Research Ethics Board approved protocols.
Supplemental Material
Supplemental material for this article is available online.
References
Supplementary Material
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