Conflict of interest statement: There are no conflicts of interest to declare by any authors of this article.
Interventions to improve patient participation in the treatment process for culturally and linguistically diverse people with cancer: A systematic review
Article first published online: 15 MAY 2012
© 2012 Wiley Publishing Asia Pty Ltd
Asia-Pacific Journal of Clinical Oncology
Volume 9, Issue 2, pages 99–109, June 2013
How to Cite
Harun, A., Harrison, J. D. and Young, J. M. (2013), Interventions to improve patient participation in the treatment process for culturally and linguistically diverse people with cancer: A systematic review. Asia-Pacific Journal of Clinical Oncology, 9: 99–109. doi: 10.1111/j.1743-7563.2012.01531.x
Funding: Ms Harun was supported by a Fulbright scholarship grant from the Institute of International Education. The authors have no other financial disclosures to declare
- Issue published online: 20 MAY 2013
- Article first published online: 15 MAY 2012
- Accepted for publication 20 January 2012.
- cultural diversity;
- minority groups;
- patient participation;
- patient-centred care
Disparities in cancer outcomes for people from culturally and linguistically diverse (CALD) groups are well known. Improving CALD patients' active participation in treatment processes holds potential to improve outcomes, but little is known of effective strategies to facilitate this. This systematic review investigated interventions to improve three aspects of participation in cancer care among CALD groups, namely involvement in decision-making, communication with health providers and treatment adherence. A comprehensive search of electronic bibliographic databases was conducted to identify intervention studies that reported outcomes relevant to patient participation for CALD groups. Two reviewers independently critically appraised the studies and abstracted data. Of 10 278 potential articles, seven met the inclusion criteria, including three randomized controlled, three non-randomized and one mixed-method experimental studies. Interventions included the use of patient navigators, videos and decision aids. The impact on patient participation was varied. The effect of a decision aid and patient navigator interventions on communication with health providers was positive. While the use of a decisions aid successfully facilitated shared decision-making and patients' perception of treatment adherence, the use of patient navigators was ineffective. A computer support system was found to improve general patient participation; however little clarification of what this involved was provided. This systematic review identified few rigorous evaluations of interventions to improve treatment participation for CALD people with cancer, highlighting the lack of a robust evidence base to improve this crucial aspect of care. The development and evaluation of interventions for diverse populations remains a priority.
Patient-centred care has long been recognized as a priority for improving quality of care.1,2 Patient-centred care involves integrating patient preferences and values to guide clinical decisions and management, and it is thought to facilitate improved patient satisfaction, communication with providers, safety, costs and efficiency in the health-care system.2–4 In the USA, UK and Australia there have been policy level drives for ensuring patient-centred care for all,5–7 regardless of age, geographical location, socioeconomic status or cultural background. In the setting of cancer, where care is often complex, enhancing patient-centred care has become a focus of service improvement initiatives and a key area of research.8–10
Cancer continues to be a significant burden internationally, affecting individuals across all ethnicities.11 Many societies are becoming more culturally and linguistically diverse (CALD), with 44 per cent of the population of Australia, for instance, having been born overseas or with at least one parent who was born abroad.12 A critical rationale for investing in research focused on CALD communities is the increasing evidence of the disparities in cancer outcomes among CALD groups.13–16 In the UK, for instance, although minority ethnic groups have a significantly lower overall risk of cancer, certain groups have higher mortality from this disease.14 In Australia the overall death rate from cancer for Indigenous Australians is 1.3-fold greater than that for non-Indigenous people, and the death rate for cervical cancer is sixfold higher for Indigenous women.16 There are several possible mechanisms for these cancer disparities, including low cancer screening rates,16–19 low participation in cancer clinical trials13,20,21 and unequal access to optimal standard and supportive care. Language barriers and cultural insensitivities in the health-care system also exist.15,16,18,20,22,23
These disparities have been attributed in part to a lack of patient-centred care for CALD people with cancer.24,25 In order to decrease these cancer disparities, several strategies have been proposed, including interventions aimed specifically at CALD communities. Targeted and culturally tailored interventions have been shown to improve screening rates and treatment outcomes for these groups.26–28 However, there is little published information describing the effectiveness of interventions to improve aspects of patient-centred care, such as patients' participation in their treatment process, for CALD people with cancer. This is despite the belief that one critical aspect of patient-centred care is involving patients in their own treatment decision-making.1–4 In fact, shared-decision making, communication and the stimulation of treatment adherence have been identified as key areas where opportunities exist to enhance patients' involvement in their care.29 Therefore a systematic review was conducted to identify, describe and evaluate the effectiveness of interventions to improve CALD patient participation in the treatment process, specifically decision-making, communication with health-care providers and adherence to treatment regimens.
A systematic search of electronic bibliographic databases was conducted. The databases accessed were MEDLINE (1948 to week 3 of February 2011), Pre-Medline (Week 3 of February 2011), PsychInfo (1806 to week 3 February 2011), EMBASE (1980 to week 4 February 2011), and Cochrane Central Register of Controlled Trials (1st quarter 2011). A medical librarian was consulted for the search. Medical subject heading terms were used where available in conjunction with a keyword search. These were adapted for each database as required. The overall search strategy involved finding articles or reports that combined the following key search terms; CALD people (e.g., minority groups/ethnic groups) + cancer + patient participation (e.g., patient-centred care/shared decision-making). Due to the existence of varying search terms for CALD people, the search strategy for these terms was partially adapted from a previously published systematic review for health education for minority groups.30 The search strategy for patient participation was adapted from previous reviews of interventions to improve treatment adherence31 and patient participation in consultations.32 The complete search terms are available from the corresponding author.
Study selection criteria
Studies that met the following criteria were eligible for inclusion in the review:
- 1The study design included a comparison group (non-randomized or randomized controlled trial [RCT]) or used a controlled or uncontrolled pre-test and post-test design.
- 2The study participants were adults aged 18 years or older with a diagnosis of cancer and from a CALD background. This included studies in which patients from a CALD background were the entire study sample or a clearly identifiable subgroup.
- 3The study evaluated an intervention that aimed to improve patient participation in the treatment processes (specifically decision-making, treatment adherence, communication with health providers or overall patient participation).
- 4Relevant outcomes were presented by cultural, ethnic or linguistic group.
Due to limited resources only studies reported in English were able to be included.
Study identification, data extraction, and quality assessment
The titles and abstracts of studies returned from the systematic search were screened based on the inclusion and exclusion criteria. The reference lists of the selected studies were also perused to find any other relevant research that had not been identified by the original search. The full text of potentially relevant articles was retrieved and further assessed for eligibility by two independent reviewers. These reviewers also independently critically appraised each included study and extracted data using a standard data collection form. Data collected include the study design, country of origin, information on the study sample and recruitment process, consent rates, a description of the intervention and study instruments, key results and relevant references.
The quality of the studies was assessed using an established critical appraisal checklist for RCT33 and for non-randomized studies.34 Where there was a disagreement between the two reviewers, a discussion took place to resolve the discrepancy. Studies were grouped by study design and research findings presented by the primary outcomes of patient participation. Where studies reported outcomes that were not relevant to the primary aims of the review, these were described separately.
The search identified 10 278 potentially relevant articles, of which 10 271 were excluded (Fig. 1). The main reasons for the exclusion of the initial 10 240 articles were that they were either not relevant, were duplicates or did not meet the review criteria. Of the 38 articles that were reviewed by the two reviewers, six studies were excluded because although they enrolled CALD patients, they did not report their results by ethnicity for the primary outcomes of interest.35–40 The remaining seven studies were all US-based and consisted of three RCT,41–43 three non-randomized studies44–46 and one mixed experimental design study.47 Of the three non-randomized studies one was a population-based pre-post study using a control group from a separate trial,44 one was a mixed-method study utilizing a cross-sectional interview at set time points after the intervention45 and one was a questionnaire study evaluating changes from baseline after the intervention.46 The mixed experimental design study combined the results of two RCT and one population-based study.47 Interventions evaluated in the RCT typically contained a larger number of participants (>246) than non-randomized trials that involved between 14 and 107.
Description of interventions
Three articles reported on one intervention, the comprehensive health enhancement support system (CHESS)42,44,47 that was implemented across several US states between 1995 and 2003. This intervention42,44,47 provided minority and Caucasian women access to interactive breast cancer information, support, and decision services via a computer program or a specialized CHESS Internet site. The other four interventions were designed specifically for CALD participants. There were three separate patient navigation studies in outpatient settings. One provided health education and counseling (phone calls, face-to-face and written materials) to low-income, predominately Hispanic women with breast or gynecological cancer,41 while another provided face-to face education and counseling to Hawaiian people with cancer and their families.43 The third was a pilot decision support intervention that used Latina breast cancer survivors as peer-navigators to provide face-to-face counseling and follow-up phone calls to Latina breast cancer patients.46 The final intervention was a culturally tailored video providing education for Navajo women with breast cancer in an outpatient setting.45
Overview of the research findings by primary outcomes
Details of the seven included and their findings are summarized in Tables 1 and 2. There were marked differences in the way each study reported the results. Given these differences, an overview of each of study's findings in relation to the primary outcomes of interest is shown in Table 3.
|First author||Sample size (consent)||Cancer type and stage||Aim(s) of the study||Details of intervention||Reported outcomes|
|Ell et al.41||487 (82%)||Breast (Stages 0–III); Gynecological (Stages 0-IVB)||Overall patient participation||Improving patient access and adherence to cancer treatment (IMPAACT) trial: 12-month culturally tailored patient navigation providing health education (decision support) and counseling (emotional support) to low-income, predominately Hispanic women with breast cancer.||No significant difference between groups in terms of treatment adherence or follow up (P > 0.05). Overall, no significant interactions between study group and adherence or either mortality and quality of life outcomes. The control arm of women with gynecological cancer had significant improvements in emotional well-being at 12 months (OR 2.72, P = 0.01).|
|N = 422 foreign-born women||Decision-making|
|Emotional support||Control: enhanced usual care (information on resources)|
|Mokuau et al.43||10†||Mixed (breast, ovarian, throat, uterine, lung, lymphoma)‡||Overall patient participation;||Six face-to-face culturally tailored navigation sessions over 3 months for Hawaiian cancer patients and their families to increase knowledge and behavioral capabilities (treatment options, communication skills).||Significant improvements for the intervention group over the control arm found at 3 months in spiritual support, mobilizing the family to accept help and the total scores in the family crisis-oriented personal evaluation scores (P < 0.05), as well as with psychological distress (P < 0.05). There were no significant differences between the groups in both knowledge and self-efficacy (P > 0.05)|
|All CALD participants||Communication with providers;|
|Informational and emotional support.||Control: two visits from research team over 3 months|
|Gustafson et al.§42||246 (recruitment rates 61–93% across 3 states)||Breast (mainly early stage I or II)||Overall patient participation||CHESS: interactive web-based program providing breast cancer information, support and decision services for minority and Caucasian women. Measurements at baseline, 2 months and 5 months.||¶ At two months the intervention resulted in greater improvement for minority women than Caucasian women for overcoming perceptions of unmet information needs (interaction: P < 0.001) and for behavioral involvement in one's health care (interaction: P = 0.02).|
|n = 64 minority patients||Control: received book on breast health|
|Wise et al.§47||353†||Breast (mainly early stage)||Overall patient participation||CHESS intervention for minority and Caucasian women (using compiled data from three different trials).||¶ Interactions were significant between ethnicity and both didactic and narrative information (P < 0.05). African-American women's health-care participation increased with greater use of both didactic and narrative information to a larger extent than that of Caucasian women.|
|n = 111 CALD patients||Control: unclear combined results from three different trials|
|Communication with health providers||Decision-making||Treatment adherence||General patient participation||Treatment knowledge|
|Ell et al.41|
|Mokuau et al.43|
|Gustafson et al.42|
|Wise et al.47|
|Sanderson et al.45|
|Sheppard et al.46|
|Gustafson et al.44|
Communication with health providers
Two studies reported outcomes on communication with health providers,45,46 both with promising results. In the pilot decision support intervention using patient navigators with Latina breast cancer patients, 67 per cent (10/15 participants) self-reported improvements with communication with their clinician as a result of the intervention.46 In the video intervention with Navajo patients with breast cancer, 93 per cent of participants (13 of 14) self-reported at 6 months post-intervention that they believed that the culturally tailored video enhanced their communication with providers and encouraged them to seek additional information about their condition. However, neither of these studies used objective measures of communication with health providers or used a comparator group in their study design.
Two studies reported outcomes on decision-making.45,46 Six months after the video intervention, 93 per cent (13/14 Navajo women) self-reported that they believed that video helped them with treatment decision-making, encouraging them to make deliberate treatment choices.45 In contrast, in the decision-support intervention with Latina women, only 33 per cent (five of 15 participants) reported that the intervention facilitated greater involvement with the treatment decision-making process.46 As with communication, there were no objective or validated measures of involvement in, or satisfaction with, the decision-making process or the impact of the intervention on the actual decisions made.
Two studies reported mixed effects of interventions on adherence to treatment.41,45 In the RCT of patient navigation for low-income, predominately Hispanic women with breast cancer, there were no significant difference between the intervention and control groups in terms of adjuvant treatment adherence and attendance at follow-up appointments (P > 0.05).41 However, 6 months after the mixed-method evaluation using a single sample of a video intervention, 92 per cent of participants (13/14) reported that they thought that the knowledge from the video helped them adhere to their treatment regimens.45
General patient participation
Five articles reported “patient participation” as an outcome but without specific clarification as to what this involved.41–44,47 Three articles reported positive effects on health-care participation with the CHESS intervention.42,44,47 Wise et al.47 found that African-American women's health-care participation increased to a larger extent than that of Caucasian women with greater use of didactic and narrative information within the CHESS intervention. Similarly, in the two other studies, there were greater improvements in health-care participation following the CHESS intervention among minority women than Caucasian women at two months post-intervention (P = 0.02)42 and at four months post-intervention (P = 0.05).44 In a separate RCT of a culturally tailored intervention for Hawaiian cancer patients and their families, there were no significant differences between groups in “self-efficacy” which was defined as getting information on one's own, communication, and requesting help.43
Overview of other research findings
In addition to the primary outcomes of interest, several studies reported other outcomes, including the impact of the interventions on treatment knowledge.42–46 Two of the reports on the CHESS intervention42,44 and the culturally tailored video for Navajo women with breast cancer45 found that participants had improvements in treatment knowledge or in information competence (perception that one could get and use health information) post-intervention. In the patient navigation intervention for Hawaiian people with cancer,43 there were no differences between the control and the experimental groups on the effect of the intervention on treatment knowledge, and in the patient navigation intervention for Latina women with breast cancer,46 just over half of the participants self-reported improvements in treatment knowledge.
Quality of reporting of studies
All of the studies provided clearly focused questions and objectives, as well as a sufficient level of information about each intervention. However, a common observation seen in the reporting of the articles is that the objectives of the interventions differed from which actual outcomes were measured or reported. For example, the patient navigation intervention for Latina women provided decision-making training for its participants; however, the outcomes related to decision-making were not assessed.41 It is unclear why relevant outcomes were not measured given the objectives of the intervention.
Among the RCT41–43 and the mixed experimental design studies,47 methodological concerns with reporting included the fact that most of the studies did not report information on blinding,41,42,47 consent rates43,47 or on the power calculation to determine their sample size.41–43,47 The mixed experimental design study47 identified combined results from three separate studies; however, details of their origins were not were provided, therefore it was not possible to verify the study quality. Among the non-randomized studies the findings were largely descriptive, such as the proportions or responses to qualitative interviews.45,46 One non-randomized study44 used a control group from a separate trial in their analysis, which may introduce bias given the control group is from a different group and different time point compared with the experimental group.
This systematic review identified seven studies for CALD people with cancer to help increase their participation in the treatment process, a key component of patient-centred care.1–4 Given the paucity of studies, it is difficult to draw conclusions about the effectiveness of the different interventions for this broad patient group. The impact of the interventions on participation was varied. Where reported, the effect of the culturally tailored video and patient navigator interventions on communication with health providers45,46 and of the computerized CHESS interventions on general health-care participation was positive.42,44,47 In contrast, the effects of the culturally tailored video and patient navigation interventions on decision-making45,46 and treatment adherence41,45 were mixed.
One limitation of this review was the difficulty in defining cultural and linguistic diversity. It is possible that some search terms may have been excluded, which could have led to the omission of potentially relevant articles or reports. Also, due to our limited resources we could not search for articles that were not in English. There are many nations that are very ethnically diverse and it is possible that interventions for CALD groups have been published in other languages but were perforce omitted in the current review.
It is important to note the heterogeneity of the interventions and target populations make any comparison challenging. Some studies were designed specifically for CALD participants, whereas others provided an analysis by ethnic group. Additionally, the medium by which the interventions were delivered varied, for example, through face-to-face communication or via videos or computers, which could affect the outcomes. Furthermore, the interventions received by patients in the control groups of the RCT included varied greatly. All studies allocated control participants to “enhanced usual care” which variously consisted of the provision of supportive materials,41 home visits from the research team and educational brochures43 or information on breast health.42 These enhanced usual care strategies are likely to act as interventions for control group participants, which may lead to an underestimate of the effectiveness of the interventions.
Although some findings were promising, caution should be taken in their interpretation. Some of the studies were pilot interventions with small sample sizes, limiting both the statistical power and generalizability of the findings. Additionally, critical information about study quality was frequently missing from the reported methods and results, for example, blinding procedures and consent rates. Furthermore, the reliance on subjective self-report measures and, in some cases, open-ended responses to qualitative interviews, is not ideal for the rigorous evaluation of the impact of an intervention. While recognizing that several of the studies included were pilots or preliminary in nature, one of the major concerns is that the reported outcomes did not always match the stated objectives of the intervention. All seven studies included in this review were based in the USA. This geographical restriction may limit the generalizabilty of the findings in an international setting, such as their not being reproducible, given variations in socioeconomic characteristics, cultural practices and access to health care across different geographical regions.
In order to measure the outcomes of interest objectively, validated and standardized instruments, questionnaires or scales should be utilized in future CALD studies. The “Preparation for decision-making” scale,48 for instance, has been validated and used to measure preparedness for participation in the decision-making process in patients.49 The “Roter interaction analysis” system50 has been employed internationally to assess provider–patient communication and has been used successfully in oncology patients.51,52 Measures of treatment adherence have generally relied on patient self-reports and more research is needed to validate these measures for adherence to cancer treatments.53 However, for those patients whose main treatment involves medication, a medication adherence scale could be used to assess treatment adherence in people with cancer.54 It is essential for any instrument used to be validated with CALD groups.
Most importantly, this review has shown that there is a paucity of evaluations of interventions to improve patient participation for CALD people with cancer. This is despite the fact that patient participation is a critical aspect of patient-centred care.1–4 While it is possible that this review missed studies that were not published in English, the search strategy was comprehensive and was informed by a medical librarian. The limited number of studies identified could plausibly relate to a broader lack of cultural competency in the health system. This is a concern given that a lack of cultural competency is acknowledged to be a major contributor to health inequalities for CALD groups.55 Cultural competency in health care has long been recognized as a priority for many health systems.56,57 It can be defined as the integration of culture in the delivery of health services and interventions that improves the well-being of diverse populations and enables cross-cultural communication.56,57 The provision of cultural competent interventions, therefore, is one approach to ensure that the needs of CALD people are met. Accordingly, some level of cultural competency is critical in research, particularly during the design, development and implementation of interventions that seek to improve care for people from CALD groups.57 This will potentially allow more individuals to be integrated into patient-centred services.
Other reasons behind the paucity of interventions for CALD people found with this review could be due to our strict inclusion criteria. This may have resulted in the exclusion of several studies because, although they detailed interventions that enrolled CALD cancer patients, they did not report outcomes relevant to patient participation (for example, Anderson et al.28) or provide CALD-specific analyses of the results (for example, Mishel et al., Shaw et al., Chen et al., Kim et al., Peele et al.36–40). These exclusions were necessary because this review sought to report the effect of the interventions on CALD patient participation. While this was beyond the scope of the current systematic review, which focused on patient participation in cancer treatment, there are numerous examples of culturally specific interventions to enhance cancer prevention among CALD communities. For example, several interventions to increase participation in cancer screening have been trialled.26,27,58–61
Working with diverse populations is challenging, as highlighted by the routine exclusion from studies of individuals who speak languages other than the primary language of the country in which they reside62,63 and the struggle to increase CALD participation in clinical trials.64,65 More resources need to be allocated to developing interventions for diverse groups in order to ensure that health services are providing patient-centred care for all. In conclusion, this systematic review identified only seven articles for interventions to increase patient participation for CALD people with cancer. In order to improve treatment outcomes and reduce cancer disparities, the development and testing of interventions for diverse groups should be a research priority.
The authors would like to thank Michelle Harrison, Faculty Liaison Librarian (Public Health) at the University of Sydney, for her assistance in finalizing the search terms used for this review.
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