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Cardiac Rehabilitation

Patient Perspectives on Declining to Participate in Home-Based Cardiac Rehabilitation

A MIXED-METHODS STUDY

Schopfer, David W. MD, MAS; Nicosia, Francesca M. PhD; Ottoboni, Linda PhD, RN; Whooley, Mary A. MD

Author Information
Journal of Cardiopulmonary Rehabilitation and Prevention: September 2020 - Volume 40 - Issue 5 - p 335-340
doi: 10.1097/HCR.0000000000000493
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Exercise-based cardiac rehabilitation (CR) programs have demonstrated morbidity and mortality benefits in patients with ischemic heart disease (IHD).1 Referral to CR is a class I recommendation and a performance measure for patients with IHD.2,3 Despite this strong endorsement, CR is underutilized in patients with IHD.4,5 Reasons for declining to participate in CR have been studied extensively for traditional facility-based programs. Distance and travel issues are known barriers to participation among veterans.6 In response to these barriers, the Veterans Health Administration (VA) has been implementing home-based CR programs. Home-based CR is increasingly becoming recognized as an alternative delivery method of CR for some individuals who may not otherwise participate in traditional CR.7

Recent investigation into CR programs in VA has shown that the availability of a home-based CR program has improved participation in CR.5,8 Yet, participation in CR remains well below the recommended goal of 70%.5,9 Reasons patients gave for declining to participate in CR when a home-based CR program is available have not been previously investigated. Identification of barriers to participation is critical to improving patient engagement in CR program from recruitment to enrollment to participation. We conducted a mixed-methods study to identify barriers related to decision by patients to decline to participate in CR despite the availability of a home-based CR program.

METHODS

SETTING

In partnership with the VA Office of Rural Health, the Healthy Heart Program was established to increase participation in CR programs. Home-based CR was offered as an alternative to facility-based CR programs to veterans with IHD. The Healthy Heart Program was initiated in 2013 at the San Francisco VA Medical Center10 and similar to programs described elsewhere.11,12 A CR staff member (either nurse or clinical exercise physiologist) visited each patient at bedside during the index hospitalization prior to discharge to offer inpatient CR and to encourage enrollment in either home-based CR or facility-based CR. Patients received 30 to 45 min of cardiovascular (CV) disease education as well as motivational interviewing regarding goals and the rationale for CR while given opportunities to ask questions. Patients who agreed to enroll in home-based CR received an evaluation for appropriateness and were given an exercise prescription, educational manual, home exercise equipment, and a logbook for tracking diet, weight, and physical activity.

Between August 2015 and August 2017, a total of 630 patients referred for CR during inpatient hospitalization for myocardial infarction, coronary revascularization, valve surgery, angina, or as an outpatient with heart failure at the San Francisco VA Medical Center were offered participation in either home-based CR or facility-based CR.

DESIGN AND PROCEDURE

This sequential, explanatory, mixed-methods study included (1) a patient-completed quantitative survey and (2) open-ended, semistructured, qualitative phone interviews completed after discharge.13 All patients who declined CR participation were asked to answer a 14-item survey related to their reasons for declining to participate. Subsequently, approximately 2-8 wk after discharge, patients who declined CR were telephoned using convenience sampling and asked to participate in a semistructured interview to discuss their reasons. Interviewing concluded when the interviewers felt that saturation was achieved. Audio-recorded interviews were professionally transcribed and de-identified.

The UCSF Committee for Human Research and San Francisco VA Medical Center institutional review board approved the study. Informed consent was obtained verbally before each telephone interview.

PARTICIPANTS

Eligibility to participate in home-based CR was based on the presence of ≥1 of the following diagnoses during hospitalization: (1) acute myocardial infarction defined as elevated troponin with ≥1 value above upper limit normal plus symptoms of ischemia, or electrocardiogram changes of new ischemia, or imaging evidence of loss of viable myocardium; (2) coronary artery bypass graft surgery; (3) obstructive coronary artery disease (>50% stenosis in ≥1 major coronary artery) with or without percutaneous coronary intervention; (4) stable angina based on final diagnosis by provider; and/or (5) valve repair or replacement including mitral and/or aortic valve surgical replacement, surgical repair, or transcutaneous replacement. Outpatients with stable heart failure without a recent hospitalization in the prior 6 wk were also eligible to participate. Patients were considered ineligible for home-based CR if any of the following were present at the time of referral: decompensated heart failure, unstable angina without revascularization, complex ventricular arrhythmias, left ventricular ejection fraction ≤35% without implantable cardiodefibrillator present, candidate for implantable cardiodefibrillator not yet implanted, syncope of unknown cause, symptomatic valvular disease, severe hypertension (resting systolic blood pressure >200 mm Hg or diastolic blood pressure >100 mm Hg), dementia or cognitive impairment (Montreal Cognitive Assessment score <26/30), or life expectancy of <1 yr as documented by provider.

MEASURES AND ANALYSES

The 14-item survey was based on the Cardiac Rehabilitation Barriers Scale but modified for patients being offered a home-based CR program and conducted at the time of referral.14–16 Patients were asked to rank each statement on a 4-point Likert scale as to how important a factor was in their reason for declining to participate (Table 1).

Table 1 - Survey of Reasons for Declining to Participate in Cardiac Rehabilitation
For Each of the Statements Below, Please Rank How Important It Was in Making Your Decision: Not Important A Little Important Somewhat Important Very Important
I already know what to do for my heart [ ] [ ] [ ] [ ]
I don't think cardiac rehab is necessary for my care [ ] [ ] [ ] [ ]
I don't like getting phone calls [ ] [ ] [ ] [ ]
I am not interested in making the lifestyle changes [ ] [ ] [ ] [ ]
I am too old or ill to make changes [ ] [ ] [ ] [ ]
I don't think changing my behavior will affect my heart [ ] [ ] [ ] [ ]
I am not confident I can change my behavior [ ] [ ] [ ] [ ]
I can't change destiny or fate [ ] [ ] [ ] [ ]
I am concerned about the costs [ ] [ ] [ ] [ ]
I have other more important issues to deal with now [ ] [ ] [ ] [ ]
I don't have transportation [ ] [ ] [ ] [ ]
I fear that cardiac rehab might be dangerous for me [ ] [ ] [ ] [ ]
I don't have enough time [ ] [ ] [ ] [ ]
I want to discuss with my personal physician first [ ] [ ] [ ] [ ]

During evaluation for CR, data were collected on patient demographics, medical history, and laboratory values for hemoglobin A1c and lipids. Weight and height measurements were used to calculate body mass index (BMI). CR staff asked patients questions related to their medical history; if unknown, CR staff reviewed patient medical records. Lipid values and hemoglobin A1c were measured by standard laboratory techniques. Demographic characteristics of those CR nonparticipants who completed the survey were compared with those who did not complete the survey. Baseline characteristics were compared using analysis of variance for continuous variables and χ2 test for dichotomous variables. Analyses were performed using Stata, version 12 (Statacorp).

To gain more insight into the rationale for CR nonparticipation, we conducted qualitative semistructured interviews on 10 patients who were eligible for home-based CR but declined to participate. We designed a semistructured interview guide related to the following domains: (1) knowledge about CR and relation to heart disease; (2) motivation to improve cardiac health; and (3) perception about CR. Follow-up probes were asked to clarify responses and elicit further information. Two researchers (L.O. and F.N.) conducted all interviews.

We analyzed interview transcripts using qualitative content or thematic analysis to code the interview data and identify major categories related to nonparticipation.17 We performed qualitative content analysis to inform the coding process. Research questions were used to develop initial/a priori domains, followed by inductive identification of emerging concepts and categories of responses.18–20 We developed an initial codebook based on known barriers to traditional CR programs from existing literature. One researcher (D.S.) coded the transcripts based on the reasons specified during the interviews for declining to participate in home-based CR and then created inductive codes based on new concepts. After initial coding, coded transcripts were shared with the interviewers for feedback and verification of accuracy. A second researcher (F.N.) reviewed the data, and both reviewers agreed upon grouping of individual codes into larger categories under a common domain. Qualitative data management and analysis were conducted using ATLAS.ti, version 8.2 (ATLAS.ti Scientific Software Development GmbH).

RESULTS

SURVEY RESPONDANT CHARACTERISTICS

Of 303 patients who were referred for outpatient CR but declined to participate, 171 (56%) patients completed the 14-item survey regarding their reasons for declining. Patients who completed the survey had similar demographics and indications for CR but had more comorbidities including hypertension, hyperlipidemia, prior myocardial infarction, atrial fibrillation. They were also more likely to have a higher BMI than those who did not complete the survey (Table 2).

Table 2 - Characteristics of Eligible Patients Who Declined to Participate in Cardiac Rehabilitation
Characteristics Declined CRa P Value
Completed Survey (n = 171) Declined Survey (n = 132)
Demographics
Age, yr 70 ± 7 67 ± 9 .61
Male 170 (99) 130 (98) .42
Race
White 136 (80) 106 (80) .76
Black 8 (5) 8 (6)
Asian/Pacific Islander 6 (4) 6 (5)
Hispanic/Latino 10 (6) 12 (9) .29
Other 21 (13) 12 (9)
Clinical indication
Angina 17 (10) 10 (8) .47
Acute MI 26 (15) 12 (9) .11
PCI 119 (70) 79 (60) .08
CABG 31 (18) 20 (15) .49
SAVR 15 (9) 16 (12) .34
TAVR 10 (6) 12 (9) .28
Heart failure 10 (6) 4 (3) .25
Comorbidities
Hypertension 159 (93) 112 (85) .02
Hyperlipidemia 167 (98) 122 (92) .03
Prior MI 77 (45) 41 (31) .01
Atrial fibrillation 28 (16) 7 (5) <.01
Heart failure 39 (23) 21 (16) .14
LVEF <50% 35 (21) 26 (20) .87
Diabetes mellitus 75 (44) 53 (40) .52
COPD 25 (15) 20 (15) .90
Stroke 13 (8) 8 (6) .60
Depression 40 (23) 22 (17) .15
PTSD 32 (19) 20 (16) .42
Smoker 27 (16) 29 (22) .17
BMI, kg/m2 31 ± 5 29 ± 5 <.01
Laboratory values
Total cholesterol, mg/dL 152 ± 45 157 ± 48 .35
LDL-C, mg/dL 83 ± 39 85 ± 38 .71
Hemoglobin A1c, % 6.4 ± 1.2 6.4 ± 1.2 .78
Abbreviations: BMI, body mass index; CABG, coronary artery bypass graft surgery; COPD, chronic obstructive pulmonary disease; CR, cardiac rehabilitation; LDL-C, low-density lipoprotein cholesterol; LVEF, left ventricular ejection fraction; MI, myocardial infarction; PCI, percutaneous coronary intervention; PTSD, post-traumatic stress disorder; SAVR, surgical aortic valve replacement; TAVR, transcutaneous aortic valve replacement.
aData are presented as mean ± SD or n (%).

SURVEY RESULTS

The 171 completed surveys revealed that the 2 most common reasons selected by participants for declining CR participation were as follows: (1) “I already know what to do for my heart” (61%; 104/171); and (2) “I don't think CR is necessary for my care” (52%; 89/171) (Figure 1). Thirty-nine percent (66/171) selected the reason, “I don't like getting phone calls,” and 33% (57/171) endorsed the option, “I am not interested in making the lifestyle changes.”

Figure 1.
Figure 1.:
Survey responses from 171 patients who declined to participate in cardiac rehabilitation: ranked by frequency of perceived importance of reasons for nonparticipation.

QUALITATIVE INTERVIEW RESULTS

We interviewed 10 patients with the following characteristics: 100% male, 40% smokers, 30% had prior coronary artery bypass surgery, and 60% had a recent percutaneous coronary intervention as the clinical indication. These interviews yielded a range of responses regarding factors associated with the decision to decline participation in home-based CR that were grouped into 2 major concepts: system barriers and personal barriers (Figure 2).

Figure 2.
Figure 2.:
Barriers to declining CR identified in patient interviews. CR indicates cardiac rehabilitation.

System Barriers

System barriers included 2 categories: (1) CR programmatic limitations; and (2) ineffective CR consultation process. Programmatic limitations included scheduling concerns, travel challenges (when facility-based CR was recommended), and financial burden associated with participation. Ineffective CR consultation included the lack of understanding of what is offered in CR, inadequate ability to explain the potential benefits of CR, and no memory of the CR consultation itself.

Programmatic Limitations

Finances were mentioned by 2 of the 10 patients interviewed. One patient highlighted concerns about personal costs of CR and said, “I'd like to afford it. If I had to go to participate ... that would be pretty much prohibitively expensive. [Paying for] gas, mileage.” Although home-based CR was offered at no cost to the patient and to remove the need to travel, the patient did not understand this at the time of the consultation.

Ineffective CR Consultation

Five of the 10 patients interviewed did not remember receiving the inpatient bedside consultation to discuss facility-based or home-based CR (eg, “I was never advised about that”). When one participant was asked about her recall related to the discussion of CR, she stated, “No, I really don't [remember].” Another patient said, “No, I was never advised about that.” Of interest, some of the patients who could not recall the CR discussion expressed interest in learning more about CR during the interview.

When patients remembered the discussion about CR, they could not recall the details of that discussion or had limited understanding of what home-based CR entailed (4/10). For example, one patient explained, “I didn't quite understand exactly what my participation was and how I was supposed to participate. She told me it was supposed to be over the phone or something. I didn't quite understand it.” Another said, “I declined. I don't even know what the program is about. I had very little knowledge about it [CR].”

Personal Barriers

Personal barriers included 2 categories: (1) modifiable barriers; and (2) nonmodifiable barriers. The 2 modifiable personal barriers identified by patients were (1) lack of motivation to change lifestyle and (2) lack of confidence in their ability to participate in CR. The 3 nonmodifiable personal barriers were (1) competing priorities in their lives such as family issues or other medical issues, (2) a negative prior experience with CR, and (3) a desire for independence from ongoing contact with health care professionals.

Modifiable

Modifiable barriers were mentioned by a few patients (3/10) and included lack of motivation or self-efficacy. Some patients reported that they already know what lifestyle changes are necessary for secondary cardiac prevention and intend to do it themselves. For example, one of the patients reported they were already doing the same things CR would help with and explained, “I'm doing that already with my doctor, with my blood pressure and diabetes numbers and everything.” Others believed that CR would not relieve symptoms or improve quality of life or did not understand enough about their heart disease and pathophysiology of disease process. One patient who declined because he did not believe CR would help him stated, “I don't think it would be of any benefit to me at this point. I think I'm reasonably intelligent.” Misunderstanding of heart disease was evidenced by one patient with a history of 4-vessel coronary bypass who said, “My echocardiogram just before I was released from the hospital was clear and [valve disease] almost unnoticeable. I think I was an unusual case in the fact that I really have no heart disease other than a bad valve which they replaced.”

Nonmodifiable

Nonmodifiable barriers were commonly mentioned during the interviews, with most patients reporting some reason for nonparticipation that could not be easily changed by improved communication and education. Seven patients identified a specific competing priority in their lives that would make ongoing participation in CR difficult. A patient with significant other priorities in his life explained how he “would have said yes to joining up for the program except for that I've also been diagnosed with Hodgkin's disease and so I'm going to be starting chemotherapy in about 2 weeks. And I just wanted to see how that goes before I commit myself to any kind of therapy program.” One patient was the primary caregiver for his wife and could not commit to CR: “I'm caring for somebody else. I'm the only guy that's gonna take care of them.” Other barriers included a previous negative CR experience. An overall desire for independence from additional health care professional contact after hospitalization was mentioned in 4 of the 10 interviews. One did not want phone calls, and 2 patients felt they were already doing everything CR was going to offer. Four patients intended to make lifestyle changes to improve their cardiac health on their own, with one participant stating, “I can do it on my own. I would say I'm already doing it.”

DISCUSSION

In this mixed-methods study, we identified substantial barriers to CR participation despite the removal of major obstacles of time and travel when a home-based, telephone-delivered CR program was offered. A lack of understanding of the potential benefits of participating in CR remains the primary reason identified by patients at the time of the consultation via survey. However, patients who were interviewed weeks after returning home from the hospital identified additional system and personal barriers. The interviews revealed that many patients who received a CR consult had an incomplete understanding of CR or had no memory of the consult. Many also identified competing life priorities that caused them to avoid enrolling or desire for independence. Yet, some modifiable barriers remained, which could potentially be removed with improved communication by referring clinicians such as lack of motivation or self-efficacy among patients that could be improved. In addition, motivational interviewing techniques are known to increase participation and should be employed.21

The challenge to increasing participation in CR is related to effectively educating eligible patients about heart disease and ensuring that they understand the information presented. We found that patients declined CR when a home-based program was available when these issues were inadequately addressed. Similar research among patients with IHD has shown that only a minority had an adequate understanding of their disease and that poor heart disease comprehension was associated with poor adherence to treatment recommendations such as diet and physical activity.22 However, education during hospitalization can significantly improve patient knowledge and behaviors regarding CV risk factors.23

The data from the surveys and the interviews indicated that many patients declining CR participation believed that they either knew how to improve their CV health or did not understand how CR may improve their symptoms or health outcomes. Importantly, we found that many patients had nonmodifiable factors related to health status and social role contributing to their decision to not participate in CR at the time of consultation. Since behavioral and lifestyle changes are often difficult to make, it is critical that accessing support to make these changes be as simple as possible while accounting for broader life contexts of patients. This is supported by prior work showing that discussion of supporting lifestyle changes, not just the health benefits of CR, resulted in greater participation.24 Furthermore, functional limitations at the time of discharge take priority for patients that contributes to lower participation.25

The differences between the data collected in the surveys suggest that responses might be altered by the timing relative to the event, the location of the data collection (hospital vs home), the cognitive capacity in the recovery period, or the opportunity to discuss questions and provide clarity. An important difference between survey and interview responses was that while only 6% of survey respondents indicated concern about “more important issues,” 70% of interviewed participants reported that competing priorities such as other medical treatments or obligations to family were more important at the time and they could not commit to any form of CR. These data could indicate that priorities change once participants return home or resume previous roles and activities, so repeated contact with a patient after the index event may be important in identifying barriers necessary to overcome to allow engagement in CR.

We found reasons given by patients for declining to participate in CR when a home-based program is offered are similar to those identified for facility-based programs with the exception of logistical barriers.6 Most studies have surveyed patients weeks or months after being offered the opportunity to participate in CR, but our survey was administered during hospitalization by the staff member who also delivered inpatient CR. Therefore, we assumed lack of CR knowledge among patients was not relevant; however, when patients were contacted for semistructured interviews weeks after discharge, >50% of the patients had limited memory of the recommendation to participate in CR or the potential benefits of CR. When the details of our home-based CR program were again explained during the interviews for this study, a number of patients expressed interest with a better understanding. Lack of understanding about CR after consultation among patients raises the question about both the optimal timing to provide this consultation and the effectiveness of education and enrollment efforts.

Earlier patient contact post-index event is felt to be better yet varies widely26–29; however, our consultation may have been too early for some patients. A more effective approach might include multiple introductions to the concepts of CR to ensure patients understand and gain their interest in participating. Although studies show that early engagement with patients increases participation in CR,30,31 perhaps targeting all patients during hospitalization is not as effective for everyone. Other strategies should be considered, such as repeated contact for patients who initially declined or via different clinicians to reinforce the importance of CR, particularly from a trusted clinician with whom the patient has an established relationship.

There are a number of limitations to our study. First, our results reflect a single VA hospital and may not be representative of all patients eligible for home-based CR. Second, because of study setting, 99% of patients approached about CR were male. Third, although the sample of interviewed patients was small, their responses provided insight into and context to the survey results, particularly the finding that patients might decline participation due to competing priorities in their personal life and their ongoing medical care.

In conclusion, our study identified both system and personal barriers to participating in home-based CR. At the time of referral to CR, most patients who declined to participate in a CR program lacked sufficient understanding of the benefits and purpose of CR. Interviews with patients after discharge identified that both system-related and personal barriers continued to be present, but there were subtle changes in perspectives of patients after returning home and time passed. Improvements in the process of educating patients about the benefits of CR and the timing of the referral and consultation process may be useful in improving future CR participation.

ACKNOWLEDGMENTS

This study was supported by a grant from the Department of Veterans Affairs Quality Enhancement Research Initiative (VA QUERI 1IP1HX002002-01) and a contract with the Patient Centered Outcomes Research Institute (PCORI IH-1304-6787). Dr Schopfer was supported by the National Center for Advancing Translational Sciences of the National Institutes of Health (NIH) under award no. KL2TR000143 and NIH NHLBI K23HL136886. This research is solely the responsibility of the authors and does not necessarily represent the official views of the NIH or reflect the position or policy of the Department of Veterans Affairs.

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Keywords:

cardiac rehabilitation; decline; participation; qualitative

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