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Access to Cardiac Rehabilitation Among South-Asian Patients by Referral Method: A Qualitative Study
People of South-Asian origin have an increased prevalence of coronary artery disease. Although cardiac rehabilitation (CR) is effective, South Asians are among the least likely people to participate in these programs. Automatic referral increases CR use and may reduce access inequalities. This study qualitatively explored whether CR referral knowledge and access varied among South-Asian patients. Participants were South-Asian cardiac patients receiving treatment at hospitals in Ontario, Canada. Each hospital refers to CR via one of four methods: automatically through paper or electronically, through discussion with allied health professionals (liaison referral), or through referral at the physician’s discretion. Data were collected via interviews and analyzed using interpretive-descriptive analysis. Four themes emerged: the importance of predischarge CR discussions with healthcare providers, limited knowledge of CR, ease of the referral process for facilitators of CR attendance, and participants’ needs for personal autonomy regarding their decision to attend CR. Liaison referral was perceived to be the most suitable referral method for participants. It facilitated communication between patients and providers, ensuring improved understanding of CR. Automatic referral may not be as well suited to this population because of reduced patient-provider communication.
People of South-Asian origin (i.e., from India, Pakistan, Sri Lanka, and Bangladesh) have an increased risk of developing coronary artery disease (CAD) and experiencing cardiovascular death (Anand et al., 2000; Bhopal, 2004; Gupta, Singh, & Verma, 2006; McKeigue, Miller, & Marmot, 1989). Although cardiac rehabilitation (CR) is effective in improving prognosis after a cardiac event, there is growing evidence that certain ethnic populations, including South Asians, are among the least likely people to participate in such programs (Banerjee, Gupta, & Singh, 2007; Mochari, Lee, Kligfield, & Mosca, 2006; Oldridge, 1988; Tod, Wadsworth, Asif, & Gerrish, 2001; Yancey, 2004). This group’s lower rate of CR participation is concerning given the increased prevalence of CAD among South Asians (Wilkinson et al., 1996).
CR attendance is influenced by numerous factors, including referral practices. When usual methods of CR referral are used, such as physician referral, there generally is low participation in CR (approximately 15%–30% of eligible patients; Bunker & Goble, 2003; Cooper, Jackson, Weinman, & Horne, 2002; Grace et al., 2002). When automatic referral is used, however, participation in CR has been shown to increase to approximately 50% (Grace, Evindar, Kung, Scholey, & Stewart, 2004a; Grace et al., 2007). Studies suggest that automatic referral (CR referral is a standard order for all eligible patients) not only increases the number of referrals made to CR, but it may reduce inequalities in access for ethnocultural minorities (Dafoe et al., 2006; Grace, Evindar, Kung, Scholey, & Stewart, 2004b; Smith & Harkness, 2006). A dearth of literature exists examining referral methods as a means to increase CR access among ethnocultural minorities, and few studies examine the poor CR attendance of South Asians (Jolly, Greenfield, & Hare, 2004; Tod et al., 2001; Yancey, 2004).
Information about the three ways in which hospitals operationalize automatic referral—universal electronic, universal paper, and liaison—have been identified through interviews (Krepostman, Scholey, Stewart, & Grace, 2005). With universal electronic referral, all patients are referred to CR unless they are ineligible based on clinical practice guidelines (Canadian Association of Cardiac Rehabilitation, 2004) via an automated referral in their electronic health record. Referral data are printed out in the CR program; physicians have to preapprove these referrals to be generated automatically when indicated. The universal paper referral category is similar in process, with the exception that the referral is paper based. In the liaison referral category, an allied health professional discusses CR with cardiac patients. Referrals are not universal and they require a physician signature; however, the opportunity for two-way communication between patients and providers is increased and this may be integral to encouraging CR enrollment. These three methods of referral, in addition to referrals made at the discretion of a specialist or generalist, are examined in this study. The purpose of the present study is to qualitatively explore whether CR referral knowledge, access, and attendance is influenced by different methods of referral among South-Asian patients.
This study used the interpretive-descriptive qualitative research method to explore South-Asian cardiac patients’ perceptions of CR and methods of referral to CR. Participants were identified and recruited from a larger study evaluating referral methods to CR, the Cardiac Rehabilitation Care Continuity Through Automatic Referral Evaluation (CRCARE) study (Link et al., 2007). Inpatients who were consecutively admitted with an underlying diagnosis of acute coronary syndrome (ACS) were recruited from 11 hospitals across Ontario. Each hospital operates under one of the referral categories described earlier.
As part of a baseline survey for the CRCARE study, patients self-identified their ethnocultural background. Those who self-identified as South Asian and spoke English and/or Punjabi were eligible for this study (this article’s first author can communicate in both English and Punjabi).
Design and Procedure
Ethics approval for the CRCARE study and this qualitative substudy was obtained from each participating hospital’s ethics board. Patients who were recruited and consented to participate in the CRCARE study and who fit the selection criteria for this substudy were contacted after discharge by telephone to determine interest in participating in a telephone interview. Participants were asked for consent to record the interviews to allow for later translation and transcription. Interviews were conducted in English or Punjabi depending on the participant’s preference. Interviews followed a semistructured interview guide with open-ended questions and probes to ensure relevant issues were examined, such as participants’ awareness and knowledge of their CR referral, beliefs regarding why they were or were not referred to CR, discussions with hospital staff about CR, and intentions to participate in CR (Table 1).
Interviews were translated if necessary and transcribed verbatim to allow for content analysis. Drawing upon interpretive-descriptive analysis, interview transcripts were coded by the first author using NVivo software (QSR International Pty Ltd., 2006) to identify major themes through the use of exploratory inductive reasoning. Themes were captured within a subjective perception and generated into an interpretive description capable of informing clinical understanding (Thorne, Kirkham, & McDonald-Emes, 1997). NVivo software facilitated coding and analysis of interviews, searching and retrieving of related segments and subthemes, and theorizing. Data transcription and analysis were concurrent with data collection and involved inductively documenting emerging themes around differences in CR referral knowledge, awareness, and intentions to participate; comparisons between referral methods; and opportunities for and barriers to CR access and participation. Concurrent data analysis (i.e., analysis of the previous transcript before the next interview) facilitated the generation of new questions for subsequent participants. After overarching themes were developed, each was analyzed regarding similarities and differences between referral methods.
To ensure the transparency of results, techniques of memoing to describe codes and transcripts were used; a review of the representativeness of the coding and categories was implemented by discussing coding strategies and examples of quotes with other authors. To guarantee the analysis was trustworthy, processes such as extensive use of direct quotations regarding themes and use of systematic coding were incorporated. To reduce bias, a second researcher independently reviewed the coding tree and transcripts after the first iteration of coding for each transcript had occurred.
Sixteen South-Asian participants with a confirmed ACS diagnosis were interviewed. Fifteen (93.8%) participants were men, and the mean age was 62.6 ± 7.9 years. The majority of participants (n = 11, 68.8%) were born in India, with 2 (12.5%) born in Bangladesh, 2 (12.5%) born in Sri Lanka, and 1 (6.3%) born in Uganda. Three participants (18.8%) had been living in Canada for less than 10 years, 3 had been in Canada between 11 and 20 years, 2 had been in Canada between 21 and 30 years, and 7 had been in Canada for more than 31 years (data for one participant were missing).
Four participants from each referral category were interviewed and theme saturation was achieved. Four central themes influencing patients’ decision to attend CR emerged from analysis of interview data. Each theme and its relationship to referral method is described as follows.
Predischarge CR Discussions with Healthcare Providers
Across all referral categories, participants noted a general lack of discussion about CR with patients during their hospital stay. In the liaison referral category, however, some discussion about CR in the hospital often was evident, although these discussions typically took place with nurses or physiotherapists and not physicians. Because liaison referral is not universal, one participant was not referred to CR and did not discuss CR with a healthcare provider.
As part of the automatic referral methods (universal paper and universal electronic), some study participants had been given information about CR in English-language documents (e.g., letters or pamphlets) while in the hospital, but they had not discussed CR with healthcare providers in person. One participant referred through this method said, “[Healthcare providers] were not too emphatic about it…They do not, you know, emphasize on how important it is. It is just like any other instruction set that they give you…the only suggestion that I have is that they could make it kind of, you know, a little more emphatic and highlight the benefits of the program.”
Another participant referred through the universal electronic method said, “The only time I heard about [CR] was through the letter, which I received probably a week to 10 days ago.” Several participants referred through usual methods had CR discussions with physicians or allied health professionals. Usual referral often does not result in CR use among South-Asian patients, however, because many in this category never were initially referred to CR given there were no discussions about the topic. One participant said, “I did not enroll, I did not go to any CR center, nothing. I do not know anything about it.” Another participant initiated discussion about CR with his physician only after hearing about CR program benefits from friends and other patients.
Overall, participants from all referral categories pointed to a lack of discussion with healthcare providers about CR while in the hospital. Many study participants acknowledged that they desired to have CR discussions, especially with their physicians.
Patients’ Limited CR Knowledge
Many study participants who had not yet attended CR were unaware of the comprehensive nature of services offered by CR programs. Among those who were aware of CR, they often only spoke about the exercise component of CR programs. As one participant in the liaison referral category noted, “It involves walking and some exercises they give you and they monitor you while it is being done.” Some patients were unsure of the benefits of CR programs, and this especially was evident in the two automatic referral categories. One study participant, referred through universal electronic methods, said with hesitation, “Well, I guess there are exercises and I have a first meeting on the 8th of May, and I don’t know, I guess they will be explaining it further.” For this participant, the first meeting is an important opportunity to gain information about CR; however, his uncertainty highlights the lack of information he received from healthcare providers during his hospital stay.
Patients in the usual referral category who had not heard of CR while in the hospital often gained knowledge of CR from other patients or from family or friends who had undergone rehabilitation. One participant noted, “Well, I was told about it by the other patients who had the same bypass surgery that you can go to rehab. So I asked my doctor and he recommended me to rehab.” For other study subjects, the current cardiac hospitalization was not their first hospitalization and they had an understanding of CR from previous participation in such programs. Both of these situations highlight the haphazard level of awareness or knowledge about CR programs among patients.
Ease of Referral Process as a Facilitator of CR Attendance
The majority of participants in the universal electronic, universal paper, and liaison categories believed the referral process was well organized. With liaison referral, patients had heard about CR while in the hospital and then had follow-up contact with the CR program upon discharge. Many of these patients initially were contacted by the CR program postdischarge to schedule an assessment appointment. One participant who was referred through the liaison method said, “The process is already facilitated. They are proactive in terms of getting in touch with you. They already know that you have been to the hospital, have had a heart incident.”
When some patients received letters about CR, they were instructed to call the program themselves to schedule an initial appointment. This was the case for one patient in the liaison category and for three of the four patients in the universal electronic category. One patient in the latter category said, “I called them to make an appointment. I got a letter, and the letter said to contact them and make a date, so I called.” The major difference between referral categories was knowledge of CR before the referral; most patients referred through liaison referral had a previous awareness of CR through in-hospital discussions.
The Need for Personal Autonomy Over Decisions to Attend CR
When patients were referred to CR, the decision to enroll was deemed a personal choice. Patients who had enrolled in CR or intended to enroll did so because they believed it was a means to obtain information and improve their health. Although external factors influenced patients’ decisions to attend CR (such as medical advice and suggestions from friends, family, or other patients), the perception was that the final decision to attend largely was the patient’s own choice. One subject said, “No, that’s solely my decision. I’m a conscious being and I understand the last time I could have done more. But this time, now that I’m off [work] for a good time, I should be able to make use of that program.”
Participants who did not attend CR believed it was not necessary. The majority of these patients said they could exercise at home or at a gym. One participant, referred through the usual method of referral, said, “Why I go? That’s the question. I talk to my doctor, he said, ‘Doesn’t need, up to you.’ So, I just control myself. I don’t eat much. I have good health. I do exercise, I joined the club here.” Some patients who previously participated in CR thought they already had the necessary information and could exercise on their own.
Although many participants said the decision to participate in CR remained in their hands, many also identified barriers that made their decision to attend CR more complex. These barriers included the distance of the CR program from home, lack of transportation, the timing of the program with regard to work conflicts, and the wait time associated with commencing some CR programs. Interestingly, the concern about wait times only was an issue for participants referred to CR via the universal electronic method. One such participant said, “If they were to call me today, I would go. This is the proper time to do it, not after 4 months.” This theme confirms that the decision to attend CR among this population appears to be a largely personal choice. However, obtaining accurate information about CR programs further influences a patient’s decision to attend CR.
Given higher rates of CAD and lower rates of CR participation identified among South Asians in the literature (Banerjee et al., 2007; Mochari et al., 2006; Oldridge, 1988; Tod et al., 2001; Yancey, 2004), this study qualitatively explored the effect of referral method on South-Asian patients’ awareness of and access to CR in Ontario. After analyzing the themes and exploring thematic differences based on referral category, results indicated that liaison referral may be the most suitable means to refer South-Asian cardiac patients, and this method may result in enhanced positive perceptions and awareness of and access to CR. This referral method allows for improved communication between patients and providers, which may enable better understanding of CR and its benefits, clarify misconceptions, and address perceived barriers. Such referrals should be universal to ensure all eligible patients are referred.
In the liaison category, patients had the opportunity to have one-on-one discussions with healthcare professionals, often nurses and physiotherapists, about CR. These discussions gave patients an awareness of CR even though it may have been limited to the exercise component. The opportunity to talk with a healthcare provider during a liaison referral may be related to greater intent to participate in CR. During a liaison referral, professionals can discuss the CR concept, the benefits of participation (e.g., frequency of visits, duration), and CR programs close to home. This method of referral may increase CR participation among South-Asian patients. Furthermore, liaison referral offers an opportunity to address language barriers, which are a potential obstacle to CR participation. Healthcare providers who are fluent in the patient’s first language may be able to communicate more effectively about CR with those who have difficulty communicating in English.
Research has shown that South-Asian patients are receptive to physician advice (perhaps more so than advice received from allied health professionals; Muthu Kumar et al., 2004). Considering that the strength of a physician’s referral is one of the strongest predictors of CR attendance among all cardiac patients (Daly et al., 2002), encouraging physicians to make referrals may increase participation among South-Asian cardiac patients. Given the rates of physician referral under usual referral conditions, however, physicians are unlikely to make referrals on a universal level. Discussions with nurses involved in the patient’s care may prove a useful alternative.
Among patients in the two automatic referral conditions (universal electronic and universal paper), similar issues often arose. Few patients had the opportunity to discuss CR with allied health professionals while in the hospital or they had obtained their information from English-language pamphlets. Although patients in this study spoke and understood English, English-language patient education materials may represent a barrier for non-English-speaking South-Asian patients (or for any other ethnocultural minority group).
Some patients reported that they were unaware a referral for CR had been made until they received a letter in the mail after discharge. Predischarge discussions may increase CR awareness and the likelihood of program attendance (Arthur, 2006). At the same time, it may be difficult for many patients to recall in-hospital discussions because of the volume of information they received, anxiety, sedation, or other medication side effects. The pamphlets patients take home may serve as useful supplements that help them to remember these discussions. Developing multilingual pamphlets for dissemination in hospitals and recruiting ethnoculturally diverse and multilingual healthcare providers are options to explore to ensure all patients are fully informed.
Patients in the two automatic referral categories perceived the referral process as well facilitated. Some patients were called by the CR program to schedule an intake appointment, while others received letters from the program with instructions to call the program. The latter approach may reduce CR enrollment because it places responsibility for scheduling an appointment on the patient. This approach often is used in programs with capacity limitations.
Patients in the universal electronic condition group reported the wait time to access CR as a barrier to attendance. In an article reviewing access to CR, Dafoe and colleagues (2006) recognized that through automatic referral “CR programs may exceed capacity, resulting in longer wait times” (p. 907). Patients in this study feared that a delay in accessing care could negatively affect their recovery or the effectiveness of CR, and they worried that their return to work would conflict with access to CR (and prohibit their participation). CR sites that institute universal automatic referrals need to consider their service capacity and implement methods to ensure patients have access to services without lengthy delays. Dafoe and colleagues recommend 7–60 days as an acceptable wait time for various diagnostic categories. Increases in funding for CR services would ensure timely access to this evidence-based care after universal referral.
Usual Methods of Referral (At Physician Discretion)
Similar to trends seen in the general cardiac population, usual methods of referral does not often result in CR use among South-Asian patients. It was within this referral category that some patients never were referred for CR, contrary to recommendations in clinical practice guidelines (Canadian Association of Cardiac Rehabilitation, 2004). Compared to automatic referral, usual referral is provided at the discretion of the physician; consequently, substantially fewer patients are referred to and enroll in CR when compared to automatic referral methods (Grace et al., 2007). Although several patients had heard of CR from healthcare professionals while in the hospital, discussions about CR with other patients, friends, or family provided their major source of information.
The decision to attend CR was perceived as a personal choice. Patients want to have discussions about CR while in the hospital. Information gained in the hospital can influence a patient’s decision to attend CR, so in-hospital discussions can be tailored to overcome misconceptions and address barriers patients perceive when deciding to enroll. For example, two patients who decided not to attend CR said they believed it was not necessary because they engage in exercise independently at home or already had attended CR for a previous cardiac event. With a one-on-one conversation about CR, there is an opportunity to clarify misconceptions, discuss the educational and other comprehensive components offered and the benefits of participation, and convey that exercise in CR is undertaken in a medically supervised environment.
Caution is warranted when interpreting this study’s results. Results cannot be generalized to non-English or Punjabi-speaking South Asians. Moreover, given the nature of the qualitative design and the lack of literature in this area, replication is warranted with a more heterogeneous population. Furthermore, because patients from other ethnocultural groups were not interviewed, it is unclear whether, or by how much, South-Asian participants have differing perspectives on CR referral compared to other ethnic groups. Finally, the lack of women in this study warrants more exploration of CR participation among South-Asian women.
Although results from this first qualitative study on CR referral methods indicate that liaison referral may be optimal for referring South-Asian cardiac patients, further investigation is needed. Advantages to liaison referral include improved communication; however, referrals are not universal and a provider fluent in the patient’s first language may not be available. After follow-up assessments, the larger CRCARE study will enable quantitative examination of the rates of CR referral, enrollment, and participation by referral method.
Results indicate that the opportunity for discussions with healthcare providers and ease of the referral process may contribute to CR attendance among South-Asian cardiac patients; these all are characteristics in liaison referral as well. Overall, this study’s preliminary findings highlight the importance of CR discussions between South-Asian patients and healthcare providers (such as nurses) before discharge. These conversations can increase the level of CR awareness among South-Asian cardiac patients and also may eliminate misconceptions about CR programs. Nurses should be encouraged to engage patients in discussions about CR because such opportunities for education are important when making the personal decision to attend CR. Implementing these methods, along with proactive facilitation of CR referrals at the health-system level, shows promise in ensuring more use of these life-saving services.
This study was funded by the Canadian Institutes of Health Research (CIHR; Grant #HOA-80676) and the Heart and Stroke Foundation. Keerat Grewal is supported by a CIHR Canada Graduate Scholarship Masters Award. Sherry Grace is supported by the CIHR (Grant #MSH-80489). Sonia Anand is a recipient of the CIHR Clinician-Scientist Phase 2 Award and holds the May Cohen Eli Lilly Chair in Women’s Health Research at McMaster University. We are grateful to all study recruiters and investigators for their efforts in participant recruitment for the overall study.
About the Authors
Keerat Grewal, MSc, is a medical student at the University of Toronto in Toronto, ON. Address correspondence to Keerat Grewal at firstname.lastname@example.org.
Yvonne W. Leung, MA, is a doctoral student at York University, Toronto, ON, Canada.
Parissa Safai, PhD, is a an assistant professor at York University, Toronto, ON, Canada.
Donna E. Stewart, MD, is a professor in and chair of the Women’s Health Program at the University Health Network and the University of Toronto, Toronto, ON, Canada.
Sonia Anand, MD PhD, is a professor of medicine and Michael G. Degroote Chair in Population Health Resarch in the department of medicine, McMaster University, Hamilton, ON, Canada.
Milan Gupta, MD, is an associate clinical professor of medicine at the University of Toronto and Division of Cardiology, William Osler Health Centre, Brampton, ON, Canada.
Cynthia Parsons, BScPT, is a cardiac rehabilitation coordinator at York Central Hospital, North York, ON, Canada.
Sherry L. Grace, PhD, is an associate professor at York University, University Health Network, University of Toronto, and York Central Hospital in Toronto, ON, Canada.
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