5Consideration of ethnicity in guidelines and systematic reviews

Publication Details

Abstract

Background:

A number of interventions have been developed to aid smoking cessation, promote physical activity and improve healthy eating for use in the general population. The effectiveness of these interventions in improving health outcomes for ethnic minority populations is, however, unclear.

Objectives:

We sought to assess to what degree ethnic minority populations are considered within the evidence base for smoking cessation, physical activity and healthy eating health promotion interventions known to be effective in populations at large.

Methods:

Two reviewers independently searched UK guidelines and international systematic reviews of interventions for smoking cessation, increasing physical activity and improving healthy eating. Guidelines were identified from the Clinical Evidence, National Institute for Health and Clinical Excellence (NICE) and Scottish Intercollegiate Guidelines Network (SIGN) databases. Systematic reviews were identified from The Campbell Collaboration, The Cochrane Library, the Database of Abstracts of Reviews of Effects (DARE) and the National Institute for Health Research Health Technology Assessment (NIHR HTA) database. We searched the guidelines and systematic reviews using predefined terms relating to ethnicity. Two reviewers independently extracted the statements made in relation to ethnicity, initially grouping these according to shared meaning and/or concept; these data were then thematically analysed.

Results:

We identified 15 guidelines and 111 systematic reviews that fulfilled our eligibility criteria. A total of 12 (87%) guidelines and 66 (59%) systematic reviews had one or more terms relating to ethnicity. All 12 of these guidelines containing key terms made statements relating to ethnicity; however, only 41 of the 66 systematic reviews with key terms made any informative statements relating to ethnicity and none of the systematic reviews conducted subgroup analyses by ethnic group. Five main themes emerged from the thematic analysis of statements: (1) acknowledging diversity; (2) identifying evidence gaps; (3) observing differential effects of interventions; (4) taking action to adapt interventions; and (5) improving research, reporting and analysis.

Conclusions:

UK guidelines and international systematic reviews provided little specific guidance with regard to which health promotion interventions are effective (or ineffective) for ethnic minority populations or how interventions with proven effectiveness in the general population can be adapted to be effective for ethnic minority populations. There is a need to consider more explicitly the evidence in relation to ethnic minority populations in the context of guidelines and systematic reviews of key health promotion interventions.

Introduction

A key component of our work was first developing a detailed appreciation of which health promotion interventions are of proven effectiveness for the general population (see Chapter 4).9 We can in turn build on this understanding to develop a theoretically informed and empirically grounded approach to promoting the health of ethnic minority populations.9 Our study has focused on identifying and assessing the evidence for effective interventions promoting smoking cessation, increasing physical activity and improving healthy eating (see Chapter 1). Evidence from guidelines, and to a lesser extent systematic reviews, usually represents the first point of access for such information on effectiveness, which increasingly underpins key decisions in health-care delivery and prioritisation. As such, it is imperative that guidelines and systematic reviews present not only evidence of effect for the general population, but also evidence of differential effects by age, gender, socioeconomic status (SES), disability and ethnicity, as these other subgroupings are likely to be associated with differential effectiveness of an intervention. In this chapter we report on our evaluation of UK guidelines and international systematic reviews to assess the degree to which ethnic minority populations – specifically African-, Chinese- and South Asian-origin populations – were considered in the evidence.

Research questions

The research question arises from Phase 1B of our study (see Chapter 2):

  • To what degree is ethnicity considered within UK guidelines and international systematic reviews on effective health interventions for smoking cessation, increasing physical activity and improving healthy eating?

Methods

The method for the identification of the guidelines and systematic reviews that we drew on is outlined in Chapter 4 (see Methods). To explore the consideration of ethnicity in UK guidelines and international systematic reviews reporting on effective interventions for smoking cessation, increasing physical activity and improving healthy eating for the general population we searched the identified guidelines and systematic reviews for any evidence statements specifically addressing ethnicity. In addition, we searched the systematic reviews for subgroup analysis by ethnic group.

We searched the full text either electronically or by eye if electronic versions were unavailable using a set of predefined key terms16 relating to our ethnic groups of interest, adopting a definition of ethnicity that included race, ethnic origin or nationality.22 The key terms used were as follows (the asterisk indicates the truncated version to encompass variations of the term, e.g. searching for Cultur* would include culture, cultures and cultural):

  • African
  • Afro*
  • Asian
  • Bangladeshi
  • Black
  • Caribbean
  • Chinese
  • Cultur*
  • Ethnic*
  • Indian
  • Minorit*
  • Rac*
  • Pakistani
  • South Asian.

The data extraction process was independently undertaken by two sets of researchers (SK and JJL for guidelines and SK and UY for systematic reviews) who recorded on the customised data extraction form (see Appendix 9) whether a guideline or systematic review included any of the key terms. The text was scrutinised and the details of the population(s) studied were recorded, including the methods used to assess ethnicity, as well as any recommendations made. A third reviewer (ED) checked for accuracy of extracted information. The systematic reviews were subsequently categorised as having either undertaken subgroup analyses or not; if they had, we aimed to record whether or not the intervention was more/equally/less likely to be effective for the ethnic minority population than for the general population considered. Evidence statements pertaining to ethnicity were recorded by ED, JJL, UY and SK. The evidence statements relating to ethnicity extracted from the guidelines were grouped according to shared meaning and/or concept and given a generic statement to illustrate this shared meaning and/or concept. The generic statements were then further categorised under themes. Evidence statements from the systematic reviews were related to these generic statements where applicable.

Results

Through our searches we identified 15 relevant UK guidelines and 2399 international systematic reviews, which were assessed for eligibility. In total, 15 guidelines and 111 systematic reviews met the inclusion criteria (see Table 2).

Figure 6 illustrates the screening process for key terms. The evidence statements from the UK guidelines are summarised in Table 7 while the evidence statements from the international systematic reviews are included in Appendix 11.

FIGURE 6. Identification of key terms and statements on ethnicity in UK guidelines and international systematic reviews.

FIGURE 6

Identification of key terms and statements on ethnicity in UK guidelines and international systematic reviews. CE, Clinical Evidence.

TABLE 7. Evidence statements extracted from the UK guidelines.

TABLE 7

Evidence statements extracted from the UK guidelines.

Of the 15 guidelines identified, 12 contained one or more key search terms and 12 made recommendations or evidence statements relating to ethnicity (see Table 7). Of the 111 systematic reviews identified, 66 (59%) contained one or more key search terms; however, 41 (62%) of the 66 systematic reviews made evidence statements relating to ethnicity (see Appendix 11). The remaining 25 systematic reviews contained the key term without any further information. None of the 66 systematic reviews conducted subgroup meta-analysis to pool the ethnic-specific results and assess differential effect sizes according to ethnicity.

Themes relating to ethnicity in UK guidelines and international systematic reviews

The evidence statements from the 12 guidelines were grouped under 16 generic statements (Table 8). From the generic statements, five themes were identified and these are summarised in Box 4. No new themes emerged from the evidence statements extracted from the systematic reviews that were not already encompassed under the five themes. Table 8 therefore represents these two sources of evidence.

TABLE 8. Generic statements on ethnicity from UK guidelines (encompassing the evidence from the international systematic reviews).

TABLE 8

Generic statements on ethnicity from UK guidelines (encompassing the evidence from the international systematic reviews).

Box Icon

BOX 4

Five themes relating to ethnicity in UK guidelines and international systematic reviews. Theme 1: Acknowledging diversity Theme 2: Identifying evidence gaps

Theme 1: acknowledging diversity

The guidelines and systematic reviews recognised ethnicity as an important factor in health promotion interventions.215 There was acknowledgement of the variation in disease patterns and risk factors137,200,221,227 between different ethnic groups,137,200 for example smoking,137,139 stress,137,215 physical inactivity79,173 and diseases such as obesity174 and cardiovascular disease,221 and awareness that some health issues may in fact be unique to certain ethnic groups. Diversity in beliefs, values and attitudes was also identified, for example perceptions of weight and overweight,174 and consequently the need to involve ethnic groups in formative work for interventions.179

Theme 2: identifying evidence gaps

The second theme related to gaps in the evidence base for health promotion interventions for ethnic minority populations. These gaps were discussed in terms of a lack of high-quality studies and randomised controlled trials79,112,137,172174,204 and a lack of studies examining whether or not intervention strategies known to be effective in the general population are also effective for ethnic minority populations (e.g. incentives201,237 and workplace127,176 settings).188,222 There was poor-quality analysis and reporting of studies involving ethnic minority populations.215 There were also studies that did not report results according to ethnic subgroups223 or which statistically adjusted for ethnicity but did not analyse their results according to ethnicity.209,219 Not surprisingly, considering the general lack of quality studies, there was also a major gap in cost-effectiveness evidence reported in the guidelines.112,170

Theme 3: observing differential effects of interventions

There was awareness of the differential effects of interventions on different ethnic groups and also across ethnic groups in various settings112,118,121,172,177,178,181,182,204,211,214,215,223,230,232 and contexts (e.g. different countries200). How recommendations for practice may impact on the health of specific ethnic minority groups and how effective interventions are for the health of ethnic minority groups were generally not known.112,172,182,204 Even within those populations for which significant evidence has accrued, such as within the African American population in the USA, there was still a lack of clear evidence despite interventions and/or materials reportedly demonstrating increased reach and better utilisation.172 Some guidelines and reviews presented evidence of interventions carried out in ethnic minority populations and there was mixed effectiveness found for these interventions, with no definitive conclusions reported.136,172,201,232 It was recommended that, in addition to interventions, there may also be differential effectiveness of the tools used to assess risk of ill-health and that ethnicity should be taken into consideration when assessing risk (e.g. body mass index,236 waist circumference137 and blood pressure137 measurements) to avoid inaccurate predictions.137

Theme 4: taking action to adapt interventions

There was also awareness that action needed to be taken to address the gaps in evidence and to adapt interventions139,211,229 and services120 to be more appropriate for diverse populations and to produce interventions and services that are equally effective for all populations. Adaptations were discussed for ethnic minority groups182,210 (e.g. language120,172,174) with the evidence suggesting that adapted interventions may be effective for behaviour change.127,136,153,183,189,198,207,216,218,227,228,229 In addition to adapting for ethnicity, the guidelines and reviews suggested that interventions should examine how other factors such as gender,172,179 age172 and SES intersect with ethnicity112,201 to influence health outcomes and affect health intervention successes. They should also adapt for psychological, social, cultural and economic determinants, this recognising the effects of the wider contexts of health in relation to health promotion for ethnic minority populations.112,172,173,176,217,232 Avoiding discrimination and stereotyping112,172 were other important considerations that were raised. The guidelines proposed that a way to ensure that interventions were appropriately adapted was by working with communities and families (e.g. conduct initial needs assessments, address barriers).79,112,122,172,174,227

Theme 5: improving research design, analysis and reporting

Improved representation of ethnic minority populations in research, along with more well-designed research studies, was recommended as a response to the observed increasing ethnic diversity.120,218,221,223,229,237 It was suggested that research should focus on filling in the gaps in evidence on, for example, effectiveness of physical activity and dietary counselling delivered in health-care settings.183 The need for research to address past and current levels of under-representation of, for example, African Americans and Asian Americans218 in studies on physical activity199 and healthy eating223 was also emphasised. It was recommended that ethnic minority groups should be proportionally represented in research in terms of their risk or rate of disease stemming from, for example, tobacco use.120 Furthermore, better collection182 and reporting214,215,223 of interventions in relation to ‘differences in access, recruitment and uptake according to . . . ethnicity’112 were recommended. Finally, more syntheses of existing data for ethnic minority health were also recommended,174,180 making use of the existing empirical studies and providing stronger evidence for researchers and health practitioners on which to base future interventions.

Discussion

An in-depth analysis of national guidelines and systematic reviews developed for populations in general has not contributed substantially to our knowledge base of which health promotion interventions work for ethnic minority populations for smoking cessation, increasing physical activity or improving healthy eating. Most guidelines (12/15) made statements regarding ethnicity whereas approximately one-third of the systematic reviews (41/111) contained such statements, which suggested that the other two-thirds did not factor ethnicity into their review process.

When ethnic minority groups were mentioned, a lack of reporting and synthesis of data for these groups further contributed to a shortage in evidence of effectiveness for ethnic minority populations, for example there were no subgroup analyses of the effects of the intervention according to ethnicity identified in these high-level syntheses of evidence. We were thus limited in our ability to detect whether there were potential differences in intervention effectiveness attributable to ethnicity or whether adapted interventions were effective.

Summarising the evidence statements provided a starting point to make sense of the guidelines and systematic reviews. The statements acknowledged diversity within populations and differential effects of interventions for different ethnic groups. They also identified gaps in our knowledge base with regard to which interventions are effective for ethnic minority populations and that action should be taken to adapt interventions. Lastly, they recommended improved research design, analysis and reporting as a response to the gaps in the evidence (see Table 8).

A search for evidence pertaining to ethnic minority populations in guidelines and systematic reviews for the general population has demonstrated that there is as yet little clarity from the existing body of evidence to guide those planning and implementing health promotion interventions for diverse populations. We hypothesise that there is a gap in the cycle of evidence in translating empirical evidence, of the health, lifestyle and life circumstances of ethnic minority populations, into national guidelines (Figure 7).

FIGURE 7. Cycle of evidence for health promotion interventions.

FIGURE 7

Cycle of evidence for health promotion interventions.

Currently, individual intervention studies, some that may have included ethnic minority groups and others that were specifically designed for ethnic minority groups, may be identified for inclusion in systematic reviews (Step 1 in Figure 7). However, these studies may be unavailable or are possibly not considered of importance to the review question at hand and are thus excluded (Step 2). Even when data from these studies are analysed, they may be discounted from the systematic review for reasons of study quality or other issues, including, for example, the diversity of ethnic groups, the small number of ethnic minority participants and different outcome measures used, all of which would prevent the pooling of ethnicity-specific data. Meanwhile, guidelines generally draw on systematic reviews as their main source of information and supplement this with expert opinion and consensus (Step 3). The latter process may introduce greater consideration of ethnicity in guidelines than was apparent in the systematic reviews drawn upon. Guidelines, for example, acknowledge diversity and research gaps and propose that these issues be addressed (see themes identified in Box 4). However, because of the lack of systematic review data, there is an absence of a solid evidence base on which to make recommendations as to whether interventions are effective for ethnic minority populations, or how to adapt interventions for ethnic minority populations. Consequently, new empirical studies are conducted with limited guidance and the cycle is perpetuated (Step 4).

Strengths and limitations

A key strength was our systematic approach to assessing what consideration has been taken of ethnic minority populations in the high-level evidence and recommendations for health promotion interventions for smoking cessation, increasing physical activity and improving healthy eating. To our knowledge, this is the first time such an endeavour has ever been undertaken with the inclusion of international systematic review.

The 2 years between the literature search (April 2009) and the production of this report (June 2011) mean that additional guidelines and systematic reviews are likely to have been published or updated during this time and this is therefore a potentially important limitation. For example, the two SIGN guidelines (SIGN 8236 and 69200) that have been included in this study have since been superseded by a newer guideline (SIGN 115243). Similarly, other reviews, such as the recently published interventions to reduce pre-diabetes risk factors for ethnic minority populations,244 have been used by NICE to develop Public Health Guidelines. An examination of these recent reviews has not, however, revealed any definitive evidence on how to improve the health of ethnic minority populations that has not already been included in systematic reviews identified in this study.

Conclusions

There exists little detailed guidance/summary evidence on how to adapt interventions to best meet the needs of ethnic minority populations. Although some individual studies may report and focus on ethnicity, this information is unlikely to be synthesised in systematic reviews, resulting in a lack of evidence from which guideline developers can develop recommendations. A two-pronged solution is needed: better reporting and synthesis of studies that include ethnic minority participants; and the development of more systematic reviews and guidelines with the specific aim of searching for and synthesising evidence of effective interventions for ethnic minority populations. In the next chapter we report on our systematic review of adapted health promotion interventions for ethnic minority populations (i.e. African-, Chinese- and South Asian-origin populations) for smoking cessation, increasing physical activity and improving healthy eating.