Factors which facilitate or impede patient engagement with pulmonary and cardiac rehabilitation: a rapid evaluation mapping review

Abstract

Background There is a considerable body of systematic review evidence considering the effectiveness of rehabilitation programmes on clinical outcomes. However, much less is known about effectively engaging and sustaining patients in rehabilitation. There is a need to understand the full range of potential intervention strategies. Methods We conducted a mapping review of UK review-level evidence published 2017–21. We searched MEDLINE, EMBASE and the Cumulative Index to Nursing and Allied Health (CINAHL) and conducted a narrative synthesis. Included reviews reported factors affecting commencement, continuation or completion of cardiac or pulmonary rehabilitation, or an intervention to facilitate these factors. Study selection was undertaken independently by two reviewers. Results In total, we identified 20 review papers that met our inclusion criteria. There was a bias towards reviews considering cardiac rehabilitation, with these numbering 16. An additional 11 unpublished interventions were also identified through internet searching of key websites. The reviews included 60 identifiable UK primary studies that considered factors which affected attendance at rehabilitation; 42 considered cardiac rehabilitation and 18 considering pulmonary rehabilitation. They reported on factors from the patients’ point of view, as well as the views of professionals involved in referral or treatment. It was more common for factors to be reported as impeding attendance at rehabilitation rather than facilitating it. We grouped the factors into patient perspective (support, culture, demographics, practical, health, emotions, knowledge/beliefs and service factors) and professional perspective (knowledge: staff and patient, staffing, adequacy of service provision and referral from other services, including support and wait times). We found considerably fewer reviews (n = 3) looking at interventions to facilitate participation in rehabilitation. Although most of the factors affecting participation were reported from a patient perspective, most of the identified interventions were implemented to address barriers to access in terms of the provider perspective. The majority of access challenges identified by patients would not therefore be addressed by the identified interventions. The more recent unevaluated interventions implemented during the COVID-19 pandemic may have the potential to act on some of the patient barriers in access to services, including travel and inconvenient timing of services. Conclusions The factors affecting commencement, continuation or completion of cardiac or pulmonary rehabilitation consist of a web of complex and interlinked factors taking into consideration the perspectives of the patients and the service providers. The small number of published interventions we identified that aim to improve access are unlikely to address the majority of these factors, especially those identified by patients as limiting their access. Better understanding of these factors will allow future interventions to be more evidence based with clear objectives as to how to address the known barriers to improve access. Limitations Time limitations constrained the consideration of study quality and precluded the inclusion of additional searching methods such as citation searching and contacting key authors. This may have implications for the completeness of the evidence base identified. Future work High-quality effectiveness studies of promising interventions to improve attendance at rehabilitation, both overall and for key patient groups, should be the focus moving forward. Funding This report presents independent research funded by the National Institute for Health Research (NIHR). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, NETSCC, the HSDR programme or the Department of Health. Study registration The study protocol is registered with PROSPERO [CRD42022309214]. Plain language summary While we know quite a lot about what makes rehabilitation for heart (cardiac) or lung (pulmonary) conditions effective, less is known about how to engage people with these services and how to encourage them to continue to attend. We have looked at what studies have already been done to summarise the factors that affect whether someone chooses to attend rehabilitation and what is being tried to improve rates of attendance. We were particularly interested in people who are less likely to attend for rehabilitation. We searched in research databases for studies published since 2017 that included UK patients and services. We found 17 relevant summary papers which included a total of 52 UK studies. Most of these papers looked at the factors that affect attendance at rehabilitation, with far fewer studies considering ways to improve attendance. There were more studies looking at rehabilitation for cardiac than pulmonary conditions. Whether someone attended rehabilitation was affected by factors such as whether they felt supported, cultural and personal factors, practical factors such as travel and access, plus patient health, emotions, knowledge and beliefs about rehabilitation services. From a staff perspective, knowledge (staff and patient), staffing levels, level of service provision, and referral from other services were believed to affect attendance. We found a few studies where changes had been made to try to improve access including a number of studies of online delivery of rehabilitation services during COVID-19. Our summary of the factors that affect attendance at rehabilitation may be helpful to inform services about what changes they should make in the future to improve levels of attendance. Scientific summary Introduction There is a considerable body of systematic review evidence considering the effectiveness of rehabilitation programmes on clinical outcomes, comparing one mode of delivery with another (e.g. community vs. centre-based rehabilitation) or considering the relative effectiveness of rehabilitation using new technologies. However, much less is known about what is effective in terms of engaging patients in rehabilitation and sustaining that engagement over time. Despite increasing awareness of the factors that influence engaging with and sustaining rehabilitation, a lack of understanding of these factors (particularly in relation to differential effects for different populations) continues to impact on implementation of rehabilitation programmes. Existing reviews do not focus on understanding what might work for populations with lower uptake. There is therefore a need to map the evidence across both pulmonary and cardiac rehabilitation to understand the full range of potential intervention strategies. We conducted a time-constrained mapping review of factors which facilitate or impede engagement (commencement, continuation and completion) with pulmonary and cardiac rehabilitation. The review searched for evidence at the systematic review level. This review addresses three related sub-questions: •What are the factors that impede or facilitate engagement (commencement, continuation or completion) in rehabilitation by patients with heart disease or chronic lung disease? •Which intervention components, evaluated or innovative, have been proposed to increase engagement in rehabilitation and which factors do they propose to address? •What evidence is there for the effectiveness of such interventions as documented at a review level? An important subtext of these questions relates to health inequalities and differential uptake. Evidence suggests that inequalities that are already present are further exacerbated due to intrinsic features of rehabilitation programmes (Campkin LM, Boyd JM, Campbell DJT. Coronary artery disease patient perspectives on exercise participation. J Mol Signal 2017;37:305–14; Mamataz T, Ghisi GLM, Pakosh M, Grace SL. Nature, availability, and utilization of women-focused cardiac rehabilitation: a systematic review. BMC Cardiovasc Disord 2021;21:459; Resurreccion DM, Motrico E, Rigabert A, Rubio-Valera M, Conejo-Ceron S, Pastor L, Moreno-Peral P. Barriers for nonparticipation and dropout of women in cardiac rehabilitation programs: a systematic review. J Womens Health (Larchmt) 2017;26:849–59; Vanzella LM, Oh P, Pakosh M, Ghisi GLM. Barriers to cardiac rehabilitation in ethnic minority groups: a scoping review. J Immigr Minor Health 2021b;23:824–39). Methods For inclusion, a review must have reported factors affecting commencement, continuation or completion of cardiac or pulmonary rehabilitation, or an intervention that aims to increase the commencement, continuation or completion of rehabilitation. We included systematic reviews that reported factors identified from a UK context published between 2017 and 2021. Reviews that focused on the clinical effectiveness of rehabilitation or compare modes of rehabilitation (e.g. physical activity vs. other), or location of rehabilitation (e.g. community vs. hospital) were considered to be outside the scope of this review. We conducted a single search process to retrieve both systematic reviews of intervention effectiveness (i.e. quantitative) and of factors impacting upon engagement (i.e. qualitative). The search privileged the main subject headings for the two focal topics of interest: Cardiac Rehabilitation [MESH] and Lung Diseases/rehabilitation* OR Pulmonary Disease, Chronic Obstructive/rehabilitation. The main subject headings were combined with free-text terms and synonyms for engagement, uptake, completion, barriers and facilitators. The searches on MEDLINE, EMBASE and Cumulative Index to Nursing and Allied Health (CINAHL) used filters to retrieve references to review publications. Further web-based searches were also conducted to facilitate the inclusion of recent initiatives that are not yet reported in the systematic review literature. Sources of recent initiatives included the databases of the King’s Fund and Health Services Management Centre, alongside brief internet-based searches. Study selection was undertaken independently by two reviewers. Following piloting of a test set each record was screened by two of the three reviewers. In cases of uncertainty each was cross referred to the third reviewer. Data synthesised from quantitative studies were determined by the reporting characteristics of the included reviews. Interventions have been tabulated alongside the summary results of included reviews. Data relating to PROGRESS-Plus variables were also extracted where reported. The review includes published and formally evaluated projects and programmes together with recent initiatives awaiting evaluation. Results Included reviews The total number of hits from our searches was 566, of which 518 were excluded at the title and abstract stage, leaving 48 that were considered as full papers for inclusion in the review. In total, we identified 20 papers that met the inclusion criteria for the review and could contribute to answering one of the research questions. Although individual quality appraisal was not undertaken, the reviews all met minimum standards for conducting and reporting systematic reviews. Two had no identifiable disaggregated data for the UK studies they included (Mamataz et al., 2021, Supervia M, Medina-Inojosa JR, Yeung C, Lopez-Jimenez F, Squires RW, Perez-Terzic CM, et al. Cardiac rehabilitation for women: a systematic review of barriers and solutions. Mayo Clin Proc 2017;13:13). These two reviews (both of cardiac rehabilitation) have been included in the review-level analysis as they are relevant but they do not contribute any data at the primary study level). For the remaining 18 reviews, disaggregated data on at least one UK primary study were identified. There was a bias towards reviews considering cardiac rehabilitation, with these numbering 15; only 5 reviews considered pulmonary rehabilitation. Seventeen reviews included qualitative data from studies that reported on factors which facilitate or impede attendance at rehabilitation from patient (n = 9) or provider/system (n = 6) perspectives or considered both perspectives (n = 2). Three reviews reported on interventions to improve referral, uptake, adherence and/or completion of rehabilitation. Population In terms of defining the population under interest, most reviews that considered cardiac rehabilitation did not limit their included studies to any particular stage of, or setting for, the rehabilitation. Only three reviews included studies only from one specific stage of rehabilitation that included phase one cardiac rehabilitation patients (acute), phase 2 cardiac rehabilitation (subacute), and rehabilitation either at the intake appointment or at six weeks post hospital discharge. Location Eight reviews mentioned the location of rehabilitation, which specifically included outpatient clinics, patients post hospital discharge, in patients programmes, home- and centre-based programmes in hospital or outpatients, or after an acute care hospitalization (which included home or hospital-based rehabilitation). One review considered virtual education delivery of cardiac rehabilitation programmes via online platforms. Primary studies From the included reviews, a total of 60 UK primary studies were identifiable that were relevant to the review questions. Of the 60 identifiable primary studies that considered factors affecting attendance at rehabilitation, 42 considered cardiac rehabilitation, with the remaining 12 considering pulmonary rehabilitation. Over half of the papers reported on factors from the patient point of view (n = 23), with 17 considering the views of professionals involved in referral or treatment. It was more common for factors to be reported as impeding attendance at rehabilitation rather than facilitating it (despite the fact that most factors could be reported as their inverse). We grouped the reported factors as those from a patient perspective (including support, culture, demographics, practical, health, emotions, knowledge/beliefs, and service factors) and from a professional perspective (knowledge: staff and patient, staffing, adequacy of service provision, and referral from other services (including support and wait times). Intervention reviews In total, three reviews identified interventions; two that considered cardiac rehabilitation and one pulmonary rehabilitation. The two reviews of cardiac rehabilitation (Matata BM, Williamson SA. A review of interventions to improve enrolment and adherence to cardiac rehabilitation among patients aged 65 years or above. Curr Cardiol Rev 2017;13:252–62; Santiago de Arauja Pio C, Chaves G, Davies P, Taylor R, Grace S. Interventions to promote patient utilization of cardiac rehabilitation: Cochrane systematic review and meta-analysis. J Clin Med 2019;8:189) included the same UK study (McPaul J. Home Visit Versus Telephone Follow‐up in Phase II Cardiac Rehabilitation Following Myocardial Infarction. MSc dissertation. Chester: University of Chester; 2007). However there were no statistics details for the UK study by Matata and Williamson (2017). Whereas in Santiago de Araujo Pio et al. (2019), the intervention was reported to study the effects of home visits versus telephone follow-up by an occupational therapist on attendance for cardiac rehabilitation. The review by Early et al. (Early F, Wellwood I, Kuhn I, Deaton C, Fuld J. Interventions to increase referral and uptake to pulmonary rehabilitation in people with COPD: a systematic review. Int J Chron Obstruct Pulmon Dis 2018;13:3571–86) was the only review to address pulmonary rehabilitation. This review included six UK-based studies as a part of a narratively synthesised systematic review. The review aimed to establish the effectiveness of interventions to improve referral to and uptake of pulmonary rehabilitation in patients with chronic obstructive pulmonary disease (COPD) when compared with standard care, alternative interventions or no intervention. Four studies reported statistically significant improvements in referral (range 3.5–36%) and two studies reported statistically significant increases in uptake (range 18–21.5%). Balance of factors In considering our typology of factors that improve or impede attendance at cardiac and/or pulmonary rehabilitation, it is interesting to note that most of the identified interventions were implemented to address barriers to access in terms of provider perspective. This was particularly true of the studies identified by Early et al. (2018), which considered access to pulmonary rehabilitation. A better understanding of the access challenges from the patient perspective may facilitate interventions to address the service provision challenges they experience more effectively. Only two interventions to improve attendance at cardiac rehabilitation were identified. However, these did better address some of the patient barriers to access, including improving support and motivation to exercise, and overcoming issues with travel to cardiac rehabilitation. Overall, however, the majority of access challenges identified by patients would not be addressed by the identified interventions. This reflects the very small number of patient access interventions identified. Effectiveness One small study on an intervention to improve attendance at cardiac rehabilitation suggested a positive effect (McPaul, 2007), although the change was not statistically significant. For pulmonary rehabilitation, two intervention studies reported an increase in referral rates (Roberts CM, Gungor G, Parker M, Craig J, Mountford J. Impact of a patient-specific co-designed COPD care scorecard on COPD care quality: a quasi-experimental study. NPJ Prim Care Respir Med 2015;25:15017; Hopkinson NS, Englebretsen C, Cooley N, Kennie K, Lim M, Woodcock T, et al. Designing and implementing a COPD discharge care bundle. Thorax 2012;67:90–2) but one-third were not effective (Graves J, Sandrey V, Graves T, Smith DL. Effectiveness of a group opt-in session on uptake and graduation rates for pulmonary rehabilitation. Chron Respir Dis 2010;7:159–64). Unpublished interventions Through additional website searching we identified 11 unpublished interventions not reported in the systematic review literature. Nine consisted of online delivery of cardiac rehabilitation (n = 7) or pulmonary rehabilitation (n = 2) during the COVID-19 pandemic. These interventions may have the potential to act on some of the patient barriers around access to services, including travel and inconvenient timing of services. One further intervention for cardiac rehabilitation trained staff in communication skills to encourage more patients to exercise, which may impact on patients’ knowledge and beliefs about rehabilitation. The final pulmonary rehabilitation intervention (developing a toolkit to increase inclusivity) may have the potential to impact on some of the demographic and cultural patient barriers identified in the factors literature. Discussion Implications for service delivery Services should in particular, consider the barriers imposed for some patients by cultural and demographic factors which may require additional effort to: •make service alterations to improve engagement with specific patient groups (e.g. females, ethnic minorities) •consider the implications of group exercise on creating reluctance to attend for some individuals •provide patient educational interventions to alter perceptions of rehabilitation and ensure that patients have a good understanding of what it involves and how it is appropriate for their needs •provide staff training around engagement with specific patient groups, communication to encourage exercise and to better explain both the content and benefits of rehabilitation •consider the impact of location and timing of service provision on attendance, including whether the continued provision of online services may be appropriate in some instances. As variations between the factors reported as impacting on cardiac or pulmonary rehabilitation are not due to fundamental differences in the patient reported factors (except those related to the specific condition (e.g. smokers reluctance for COPD rehabilitation), specialities can learn from each other in terms of potential interventions to improve attendance. Implications for research The existing review level literature on the factors which impact on attendance for rehabilitation of both pulmonary and cardiac conditions would benefit from a greater focus on what could be done to facilitate attendance as the evidence currently has a negative focus. Research into interventions to improve attendance at rehabilitation, both overall and for key patient groups, should be the focus moving forward. In developing interventions to improve access to an engagement with rehabilitation services the perspectives of both the patients and the services providers should be considered. Conclusions The factors affecting commencement, continuation or completion of cardiac or pulmonary rehabilitation consist of a web of complex and interlinked factors taking into consideration the perspectives of the patients and the service providers. Although most of the factors affecting participation were reported from a patient perspective, most of the identified interventions were implemented to address barriers to access in terms of the provider perspective. Thus, the majority of access challenges identified by patients would not be addressed by the identified interventions. Better understanding of these factors will allow future interventions to be more evidence based with clear objectives as to how to address the known barriers to improve access. Funding This report presents independent research funded by the National Institute for Health Research (NIHR). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, NETSCC, the HSDR programme or the Department of Health. Study registration The study protocol is registered with PROSPERO [CRD42022309214].