Strategies to promote the completion of patient-reported outcome measures by culturally and linguistically diverse and Indigenous Peoples in clinical care settings: a systematic review.

doi:10.21203/rs.3.rs-5300049/v1

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Systematic Review

Strategies to promote the completion of patient-reported outcome measures by culturally and linguistically diverse and Indigenous Peoples in clinical care settings: a systematic review.

https://doi.org/10.21203/rs.3.rs-5300049/v1

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Purpose

There is evidence of poor completion of patient-reported outcome measures (PROMs) by culturally and linguistically diverse (CALD) and Indigenous populations with chronic health conditions. We aimed to systematically review strategies used to increase PROM uptake and completion of PROMs by CALD and Indigenous Peoples in clinical care settings and develop specific recommendations to promote PROM completion in these populations.

Methods

We searched Medline, Embase, Scopus, Web of Science Core Collections and CINAHL databases from 1 January 2000 to 19 September 2024. Primary studies were included if they focused on strategies/enablers of PROMs use in the care of CALD and Indigenous populations in clinical care settings. The quality of included papers was appraised independently by two reviewers, using the Critical Appraisal Skills Programme (CASP) and Mixed Methods Appraisal Tool (MMAT). Data were analysed thematically. PROSPERO registration: CRD42023469317.

Results

Of 13,450 title/abstracts retrieved, five papers met eligibility. Strategies to promote PROM completion by Indigenous Peoples included 1) providing training to patients about what PROMs are and 2) offering verbal modes of completion and 3) community consultation during design, development, and implementation of PROMs to ensure culturally appropriate and sensitive PROMs are used. Strategies to increase completion amongst CALD populations included 1) providing information about how to use electronic PROMs, 2) facilitating self-completion, 3) offering different modes of completion (paper-based, digital), and 4) increasing availability and system-wide support of culturally and linguistically appropriate PROM translations.

Conclusion

Few studies reported strategies to increase the completion of PROMs by CALD and/or Indigenous Peoples. Adequate training, planning (including community consultation), resourcing, and financial support are required to encourage CALD and Indigenous Peoples to participate in PROM initiatives globally.

Patient-reported outcome measures

clinical care settings

culturally and linguistically diverse

Indigenous Peoples

systematic review

People from culturally and linguistically diverse (CALD) backgrounds and Indigenous communities often struggle to complete patient-reported outcome measures (PROMs) in healthcare. PROMs are health surveys that ask patients about how they feel, function and live their lives with their health conditions.

This study addresses the low completion rates of PROMs by CALD and Indigenous Peoples by identifying ways that these populations could be helped to complete PROMs.

Effective ways for helping Indigenous communities complete PROMs included educating patients about PROMs, offering verbal completion options, and community involvement in designing the PROMs. For CALD populations, useful ways included providing information on electronic PROMs and how to complete them. These findings highlight the need for better training, community involvement, and resources to improve PROM completion by these populations to ensure that their voices are included in healthcare decision making.

Chronic conditions are long-lasting and persistent medical conditions that impact a person’s health-related quality of life (HRQL)[1] and are responsible for 74% of all deaths globally[2].

CALD and Indigenous Peoples experience higher rates of chronic conditions and worse health outcomes over time compared with their English-speaking counterparts[3], including poorer survival outcomes[4], HRQL and psychological wellbeing[5], and increased risk of hospitalisation and emergency department visits[6]. CALD and Indigenous Peoples are historically marginalized, underserved and underrepresented in healthcare policy and decision-making[7–10].

1.1 Contributing factors of poor health status for CALD populations

People who are CALD may have poor access to high-quality medical advice due to socioeconomic factors such as distance from their home to health services, availability of culturally appropriate health services, and out-of-pocket costs[11].

Poorer health outcomes within CALD populations may be exacerbated by linguistic and cultural incompatibility during clinical encounters[12, 13]. Even when people speak a reasonable amount of English, it can be difficult to describe health concerns like pain[11], and to understand medical terminology[11, 14]. Healthcare professionals also find it harder to assess and manage CALD patients’ symptoms due to communication barriers[15] and overestimating their patient’s level of English proficiency[16].

1.2 Contributing factors of poor health status for Indigenous Peoples

Systematic review of disparities in healthcare services amongst Indigenous populations in North America, Australia and New Zealand highlight contributing factors such as rural location and socioeconomic status contribute to poorer accessibility of health services[17]. Cultural conflicts between Western medicine and native spirituality on Indigenous People’s view of health and wellbeing[17] can lead to mistrust and underutilization of healthcare services, further exacerbating health disparities.

1.3 Improving quality of life for CALD and Indigenous Peoples

Patient-reported outcome measures (PROMs) enable the collection of self-reported information from patients about their health condition without interpretation from anyone else[18] and assess outcomes such as disease symptoms, treatment side-effects, and HRQL[19, 20]. In clinical practice they can be used to facilitate communication between patients and their clinicians[21] and monitor responses to treatment over time[22].

In clinical care settings, there is low PROM completion rates by CALD and Indigenous populations[23]. This means evidence informing clinical decision-making and medicines regulatory decisions often exclude CALD and Indigenous People’s voices, impacting the validity and generalisability of research findings as participant samples often fail to represent diverse populations[24].

1.4 Defining CALD and Indigenous Peoples

The Australian Bureau of Statistics, in 1999, introduced the term “Cultural and Linguistic Diversity” to draw attention to multicultural populations in Australia, with a range of linguistic and cultural characteristics. In this study, CALD refers to people born in non-English speaking countries, and/or who do not speak English at home and/or have limited English proficiency (LEP)[25].

Different terms have been used to refer to Indigenous Peoples such as Aboriginal and Torres Strait Islander peoples, indigenous Australians/peoples, Australia’s indigenous peoples, First Nations, and traditional owners. For consistency when reporting findings about individuals, the term “Indigenous Peoples” will be used[25].

1.5 Study Aim

By synthesizing existing research, this systematic review aims to identify strategies of PROM completion by CALD and Indigenous Peoples and offer evidence-based recommendations for healthcare providers and policymakers, putting findings in the context of an existing program of PROMs collection implemented in New South Wales, Australia.

This systematic review was conducted and reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement (see Supplementary File 1)[26] and was registered on PROSPERO: CRD42023469317. The SPIDER (Sample, Phenomenon of Interest, Design, Evaluation/Outcome, Research type) tool was adopted to define key elements of the review question and inform the search strategy[27].

2.1 Electronic searches

A comprehensive search strategy was developed by JN with advice from the project team and iterative consultations with an academic liaison librarian at the University of Sydney. The search was conducted by JN in Medline, Embase, Scopus, Web of Science Core Collections and CINHAL databases from 1 January 2000 (the year that PROMs were introduced in the United States as a reimbursement tool for healthcare organisations[28]) to 19 September 2024 (date data extraction and analysis was completed). Alerts were enabled to inform any new studies up until data extraction and analysis was finalised. The search strategy included population terms such as “culturally and linguistically diverse”, “Non-English Speaking Background”, “Indigenous Peoples”; intervention terms such as “patient-reported outcome”; outcome terms like “strategies”; and study design terms like “qualitative” and “mixed methods”. These concepts (population, intervention, outcome, and study design) were combined using the Boolean term “AND”. There were no language or country restrictions. See Supplementary File 2 for the full search strategy.

2.2 Study selection and eligibility criteria

Retrieved papers were assessed against the eligibility criteria outlined in Table 1.

Table 1

Inclusion and exclusion criteria used to screen eligibility of identified studies using SPIDER (Sample, Phenomenon of Interest, Design, Evaluation/Outcome, Research type) tool
Aspect	Inclusion criteria	Exclusion Criteria
Sample	• Adult CALD and/or Indigenous Peoples with a chronic condition, or healthcare staff treating patients with chronic conditions, defined as a condition that persists and/or requires ongoing surveillance/monitoring and/or treatment and/or worsens over time and/or patient experiences long or late-term effects of treatment. • Healthcare staff who use translated PROMs and/or use PROMs for CALD and/or Indigenous peoples	• Population: <18 years of age and/or not CALD or Indigenous and/or does not have chronic condition.
Phenomenon of interest	• PROMs completed in routine care settings (including research and clinical practice)	• Focused only on PREMs, not PROMs.
Design	• Qualitative, quantitative, mixed-methods, cohort	• n/a
Outcome	• Attitudes, perspectives and experiences of using PROMs	• Focus on validation of PROMs, hypothetical scenarios generated (PROMs not implemented).
Research type	• Primary, peer-reviewed research	• Reviews, editorials.
Abbreviations: CALD: culturally and linguistically diverse; PROMs: Patient-reported outcome measures; PREMs: patient-reported experience measures.

2.3 Screening

Search results from all databases were downloaded into Endnote 20[29]. Following de-duplication, remaining citations were exported into Covidence, a data management software used for systematic reviews (Veritas Health Innovation, Melbourne, Australia)[30]. One reviewer (JN) screened all retrieved titles and abstracts against the eligibility criteria. A second reviewer (BK) randomly screened 20% against the eligibility criteria to ensure inter-rater reliability. Studies eligible for full-text review were independently assessed by JN and BK. Any disagreements about study eligibility were discussed between reviewers until consensus was reached. Any disagreements were discussed with a third reviewer (CR). Study selection is summarised in the PRISMA flow chart (See Fig. 1).

To ensure no potentially relevant papers were missed, JN searched the reference lists and authors of included papers. No additional papers were added from these searches. One full-text paper in Spanish was translated to English by the University of Sydney Library.

2.4 Data Extraction and Synthesis

Though some definitions of ‘CALD’ encompass Indigenous Peoples, we have synthesised and reported evidence for Indigenous Peoples separately as they are the first and original inhabitants, contributing uniquely to cultural and linguistic diversity in their respective countries.

2.4.1 Quantitative Data

Data were extracted using a predetermined table in Microsoft Excel, including headings such as “information about PROM(s) used in the study”, “participants”, “qualitative framework”, “study methods”, “data analysis”, “strategies for PROM completion” and “perspectives and experiences of using PROMs”.

2.4.2 Qualitative Data

Thematic analysis was used to synthesise qualitative findings[31]. Microsoft Word was used to group strategies to PROM completion from each paper, including representative quotes. Via an iterative process, JN and CR developed themes, and all authors were consulted to capture a range of clinical and health-service perspectives about the data.

2.5 Assessment of methodological quality

2.5. 1 Qualitative Studies

To assess the methodological quality of qualitative studies, the Critical Appraisal Skills Programme (CASP)[32] assessment tool was chosen as it is a widely used tool for quality appraisal in health-related qualitative research, endorsed by the Cochrane Qualitative and Implementation Methods Group and recommended for novice qualitative researchers[33]. There are 10 questions across three sections with ‘yes’, ‘no’ and ‘can’t tell’ options: (A) Are the results of the study valid? (B) What are the results? (C) Will the results help locally?

2.5.2 Quantitative Studies

To appraise the quality of mixed-method studies the Mixed Methods Appraisal Tool (MMAT) was used as it was developed for mixed-method systematic reviews[34]. There are five methodological quality criteria rated with ‘yes’, ‘no’ and ‘can’t tell’ options.

3.1 Study inclusion

Three authors were contacted for further information to determine eligibility; these studies were excluded due to non-response (n = 2) or not meeting eligibility criteria (n = 1).

3.2 Summary of included Papers

Characteristics of the included papers are described in Table 2. Five studies were included which were conducted in the United States (n = 3)[35–37], Australia (n = 1)[38] and Europe (n = 1)[39] across a range of care settings, including academic, outpatient, inpatient and community centres. PROMs used in studies included PROMIS-29[38], PAID[38], and MoPat2[39] (specifically designed for the study). Three studies did not report which PROMs were used[35–37].

Study designs included qualitative (n = 4)[35–38] and mixed methods(n = 1)[39]. CALD patient perspectives were reported in four studies[36–39] and perspectives of healthcare staff were reported in two studies[35, 39].

Table 2

Summary of included papers.
First author (year of publication)	Location	Study design	Setting	Sample size	Patient or healthcare staff	Participant characteristics	PROM used
Allar (2022)	Boston, Massachusetts, USA.	Qualitative interviews	Academic medical centers	24	Healthcare staff	English speaking surgeons using translated PROMs	Not reported
Farina (2022)	Boston, Massachusetts, USA	Qualitative interviews	Cancer treatment and research facility	10	Patients	Spanish-speaking cancer patients	Not reported
Burgess (2022)	Shoalhaven, New South Wales, Australia	Qualitative interviews and focus groups	Community centres and participant homes	29	Patients	Aboriginal and Torres Strait Islander patients with diabetes	PROMIS-29, PAID
Long (2021)	Baltimore, Maryland, USA	Observation and qualitative interviews	Hand and upper extremity clinic	17	Patients	Non-English speaking patients attending clinic	Not reported
Soto-Rey (2018)	Europe	Quantitative survey	Outpatient care centre, dermatologic clinic, and university hospital	495 patients, 28 clinicians	Both	English, French, German, Italian, Polish, Spanish, and Turkish patients attending study clinics; clinicians employed at clinics	MoPat2
Abbreviations patient-reported outcome measures (PROMs); patient-reported outcomes measurement information system- 29 (PROMIS-29); Problem Areas In Diabetes (PAID); United States of America (USA)

3.3 Assessment of methodological quality

3.3.1 Qualitative Papers

Figure 2 shows the results from the quality appraisal of qualitative studies. Of note, half of the studies did not report sufficient information to determine if data analysis was rigorous (criteria 8) and half of the studies did not clearly describe if ethical issues were addressed (criteria 7), or if the relationship between researchers (criteria 6) was considered.

3.3.2 Quantitative and Mixed-Methods Papers

The results from the quality appraisal of the mixed method study [39] is shown in Table 4.

Table 4

Methodological quality of mixed-method papers using Mixed Methods Appraisal Tool (MMAT).
Study	Appraisal	Criteria					Criteria met	Final score
Study	Appraisal	1	2	3	4	5	Criteria met	Final score
Soto-Rey (2018)	Mixed method	No	Can’t Tell	No	Can’t tell	No	0/5	0/5
Note. Quantitative Criteria: 1) Is the sampling strategy relevant to address the research question? 2) Is the sample representative of the target population? 3) Are the measurements appropriate? 4) Is the risk of nonresponse bias low? 5) Is the statistical analysis appropriate to answer the research question? Qualitative Criteria: 1) Is the qualitative approach appropriate to answer the research question? 2) Are the qualitative data collection methods adequate to address the research question? 3) Are the findings adequately derived from the data? 4) Is the interpretation of results sufficiently substantiated by data? 5) Is there coherence between qualitative data sources, collection, analysis and interpretation? Mixed Methods Criteria: 1) Is there an adequate rationale for using a mixed methods design to address the research question? 2) Are the different components of the study effectively integrated to answer the research question? 3) Are the outputs of the integration of qualitative and quantitative components adequately interpreted? 4) Are divergences and inconsistencies between quantitative and qualitative results adequately addressed? 5) Do the different components of the study adhere to the quality criteria of each tradition of the methods involved?

We identified five strategies to promote PROM completion in CALD and/or Indigenous populations, including one specific strategy reported by Indigenous Peoples, one specific strategy reported by CALD populations, one strategy reported by CALD and Indigenous Peoples, and two strategies from the perspective of healthcare staff about the use of translated PROMs in CALD populations. Notably, few specific strategies addressed how to promote PROMs completion in these populations.

4.1 Patient-level enablers and strategies

Theme: Willingness to complete PROMs depended on Indigenous People’s understanding of why they were asked to complete PROMs

Ensuring PROMs are culturally appropriate can help Indigenous Peoples understand why PROMs are used. As a strategy to increase PROMs uptake, Aboriginal and Torres Strait Islander participants with diabetes called for community representatives to be included in all stages of research development and conduct to ensure the chosen PROMs aligned with their cultural needs: “the questions need to be looked out from us, like from a cultural way”(Aboriginal and Torres Strait Islander participant)[38]. PROM completion would have been encouraged if there were specific questions about family, culture, and the impact that the Stolen Generations has had on Aboriginal health[38]. Aboriginal and Torres Strait Islander participants believed PROMIS-29 was written with the assumption they had easy access to services, which is not true for many of them[38]. This finding was not reported by CALD populations in the included studies.

Theme: CALD populations require support to understand and complete PROMs

In several studies, staff, carers, and family tended to help CALD patients complete PROMs by translating questions, recording responses, or providing information about what PRO scores meant[35–37]. However, when staff assisted CALD patients with completing PROMs through a live phone interpreter, staff did not always accurately read out the PROM questions and responses[37].

Theme: Patients had varied levels of digital and health literacy

PROM completion needed to consider varied digital and health literacy in CALD and Indigenous populations.

Indigenous Peoples

An Aboriginal and Torres Strait Islander study participant expressed that PROMs administered verbally would facilitate uptake in Aboriginal and Torres Strait Islander peoples because they "come from the culture where we’re visual, we talk more (Aboriginal and Torres Strait Islander participant)"[38].

Some Aboriginal and Torres Strait Islander participants reported PROMIS-29 was written at a level above average health literacy and included too much medical jargon, so terminology needed to be simplified and clearer to facilitate completion[38]:

"I don’t know what diabetes is, you know, in plain English I don’t. All the doctor just give me a little tablet and I just took it, and I still don’t know what it means. (Aboriginal and Torres Strait Islander participant)[38]

CALD Population

One qualitative study among 10 Spanish-speaking cancer patients reported an interest in completing ePROMs if there was a staff member available to help them understand how to use the ePROM platform, which contrasted English-speaking participants who were largely uninterested in ePROMs[36].

ePROMs were accepted by non-English speaking dermatology patients in Europe if the platform was accessible in their home language[39]. For example, administrative and user functions were translated; patients could generate surveys in their preferred language (English, French, German, Italian, Polish, Spanish and Turkish) and respondent burden was reduced by limiting the number of questions patients needed to complete[39]. Older CALD participants were, on average, not willing to complete PROMs in the future and had difficulties using iPads compared with younger CALD participants[39]. In support of this, non-English speaking patients in the USA found ePROMs easier to complete if there were minimal system errors[37].

4.2 Healthcare staff enablers and strategies

Theme: Availability of culturally congruent and linguistically correct PROMs

Notably, no included studies reported the perspectives of healthcare staff that used PROMs with Indigenous Peoples. Both studies that included healthcare staff perspectives explored the use of translated PROMs in CALD populations.

Surgeons felt leadership advocacy and financial resources determined whether using translated PROMs were feasible in clinical care[35]. Surgeons reflected that access to culturally congruent and linguistically correct PROMs were important so that no matter the person’s culture or language, questions were interpreted in the same way and meaningful to the patient’s lived experience: “Something just transcribed from English to another language does not necessarily equate to what the intention of the questionnaire was”[35].

Theme: PROMs should add value to existing clinical practice

Both studies that reported on the perspectives of healthcare staff highlighted that the effort to use translated PROMs should coincide with the added value to biomedical evaluations[35, 39]. One surgeon wanted to see the benefit of PROM use more clearly to encourage them to “buy in” to using translated PROMs: “it’s getting patients to buy in, but it’s also getting us docs to buy in”[35].

Theme: ePROMs can promote use of translated PROMs in existing workflows

As electronic medical records (EMR) were in English, the ability to embed translated PROMs into the EMR was important for some healthcare staff. For surgeons, this was because it would improve accessibility of PROM data, encourage use of translated PROMs, and reduce need for interpreters[35]. Dermatologists in Europe reported ePROMs were highly acceptable as the system reduced resources required to obtain and administer translated PROMs in clinics and data from multiple surveys was safely stored in a central system[39].

Based on our findings, strategies to promote PROM completion by CALD and Indigenous Peoples are reported in Table 5.

Table 5

Summary of recommendations based on evidence from included studies.
Stage	Recommendations
During PROM development for CALD and Indigenous populations	• Consider the needs of individual populations and whether cultural and linguistic adaptations are required, rather than just language translation. • PROMs should be developed free from medical jargon, suitable for patients with low or limited health literacy. • PROMs should be co-designed with communities to ensure questions align with culture and lived experiences. • Increase financial resources and leadership support to embed translated PROMs in clinical workflows.
During ePROM system development	• Ensure ePROM systems are accessibly designed prior to completion (e.g., minimal system errors, user friendly for patients, embedded in EMR for healthcare staff, result outputs for translated PROMs in English).
During patient communication about PROM completion (explaining purpose, explaining importance).	• Offer patients different modes of PROM completion based on personal preference. Consider developing PROMs that can be completed verbally. • Healthcare staff should explain to family and carers the importance of reading PROM questions and responses in verbatim to patients. • The purpose and importance of PROMs and what the questions mean should be communicated to patients prior to completion (e.g., video resources, via healthcare staff, community members, etc.).
After PROM completion	• Healthcare staff should help patients to understand how PROM data relates to health-related quality of life, therapeutic options, or when compared to average scores for the relevant patient cohorts.
Abbreviations: CALD: culturally and linguistically diverse; PROMs: patient-reported outcome measures.

This study synthesises strategies of PROM completion by CALD and Indigenous Peoples and their healthcare teams. The main findings were 1) offering different modes of completion could facilitate PROM completion by accommodating varied health and digital literacy levels, 2) patients required assistance to understand and complete PROMs, and 3) surgeons believed culturally and linguistically appropriate translations of PROMs were important but difficult to obtain and embed in clinical workflows. These findings are consistent with other systematic reviews reporting the barriers and enablers for PROM implementation in English-speaking populations[40].

Some unique findings, specific to Indigenous Peoples were 1) the content of PROMIS-29 and PAID was not acceptable to Aboriginal and Torres Strait Islander Peoples who speak Australian Aboriginal English (AAE) rather than Standard English; 2) verbal completion may be a culturally appropriate mode of completion for Aboriginal and Torres Strait Islander Peoples. Further research is required to determine how these strategies could be implemented with other Indigenous populations, and whether they could be adopted by CALD populations.

The Agency of Clinical Innovation (Sydney, Australia), our project partner, collect ePROMs in 11 community languages in New South Wales (NSW) using a digital platform- the Health Outcomes and Patient Experience (HOPE). At the time of publication, over 108,000 PROMs have been collected using HOPE, which has been translated into 10 community languages other than English. Given the success of this large-scale digitally enabled collection of PROMs, the blueprint for this program has been adopted by other Australian states. With this in mind, we consider how enablers reported in this review can be feasibly scaled into large-scale PROM initiatives for CALD and Indigenous populations globally.

Offering PROMs in a range of community languages may overcome some reported challenges such as circumnavigating language and cultural barriers during clinical encounters (e.g., assessing pain), especially if an interpreter is unavailable. Reflecting the importance of this, HOPE was co-designed with patients and carers.

To be meaningful to patients and useful in clinical practice, evidence suggests PROMs should not only be translated but also culturally and linguistically adapted to ensure acceptability and appropriateness amongst CALD and Indigenous Peoples and healthcare staff[39], and applicable in clinical care settings. Across cultural groups in this study, there was mixed evidence about the importance of culturally and linguistically adapted PROMs. For Aboriginal and Torres Strait Islander peoples in this study, PROMIS-29 did not align with their lived experience, values, and daily priorities[38]. On the contrary, one study set in an European dermatology clinic did not report evidence their ePROM system was culturally adapted, appropriate or if there was training provided to patients to complete ePROMs[39]. Nevertheless, CALD patients found ePROMs easy to use[39]. Further, evidence is required to elucidate if translations are culturally appropriate or if cultural adaption is required to promote the acceptability of PROMs within a European context and other CALD populations.

Our review reported that when patients had assistance to complete PROMs, questions and responses were not always read precisely[37]. This emphasises the importance of reading PROMs in verbatim, to minimise interpretation errors, which can contribute to inaccurate responses and therefore misinformed clinical care. Importantly, for CALD and Indigenous Peoples to self-complete PROMs, administrative instructions should also be translated into their preferred language, which facilitated the reported success of one included study in an European dermatology setting[39] and is also a feature of HOPE.

There may also be cultural barriers to PROM completion that can be overcome with novel developments in PROM administration, such as verbal completion in a patient’s preferred language. For example, ‘yarning’ builds a culturally safe environment for Aboriginal and Torres Strait Islander peoples by giving the community a space to talk, share, educate and build relationships[41, 42]. Yarning can facilitate culturally competent research and healthcare by emphasising two-way communication between health practitioners (or researchers) and participants[41, 42]. PROMs could be collected while Aboriginal and Torres Strait Islander peoples yarn, fostering trust between healthcare staff and patients[38].

Integration of translated PROM data with patients’ EMR would facilitate PROM use by healthcare staff and enable linkage of PROs to clinical events to facilitate timely care[43], a feature available in HOPE.

Implications on practice, policy, and future research

Findings from this review have implications for practice and policy as several recommendations to promoting the completion of PROMs by CALD and Indigenous Peoples have been made. In future research, in partnership with NSW Health, we will explore the gap in documented knowledge about factors that determine the acceptability and suitability of PROMs to diverse cultural and linguistic populations[44]. By addressing these challenges, we can move towards a more equitable healthcare system that respects and responds to the unique needs of all patients, regardless of cultural or language background.

Limitations

Notably, few studies met the eligibility criteria for this review. This was primarily because papers: 1) mentioned CALD and/or Indigenous terms in the title or abstract, but not within the study design; and/or 2) did not use PROMs as their intervention; and/or 3) addressed CALD and/or Indigenous populations superficially.

The quality of the evidence using the MMAT appraisal tool was low, highlighting the need for high-quality, robust evidence of specific strategies of PROM completion in CALD and Indigenous populations.

Incongruent definitions or terms to describe CALD and Indigenous populations were used in the literature. To mitigate this, we ensured our search strategy was comprehensive and incorporated terms used globally to describe these populations. The search was restricted to published scientific literature; it may be possible that relevant learnings from grey literature were missed.

Some PROMs do not reflect the priorities and lived experiences of CALD or Indigenous Peoples, leading to poor uptake. Consultation with CALD and Indigenous Peoples during PROM development and implementation could improve completion, if the content, mode of administration and implementation approaches were culturally appropriate and acceptable. Further, to successfully promote the completion of translated PROMs within chronic care settings, adequate training, planning, resourcing, and financial support are required for healthcare teams. Improving the completion rates of PROMs by CALD and Indigenous peoples will contribute to a more comprehensive and equitable assessment of patient needs, better-informed clinical decisions, and a significant enhancement in the overall quality of life for these individuals.

CALD: culturally and linguistically diverse; PRO: patient-reported outcome; PROM: patient-reported outcome measures; HRQL: health-related quality of life; PRISMA: Preferred Reporting Items for Systematic Reviews and Meta-Analyses; CASP: Critical Appraisal Skills Programme; MMAT: Mixed-methods Appraisal Tool; PAID: Problem Areas in Diabetes; PruNet: European Network on Assessment of Severity and Burden of Pruritus

The study is jointly funded by our partner NSW Health and an NHMRC Partnerships grant, 2022 (#2015773). Jessica Nikolovski is a student in the Australian Government Research Training Program (RTP). Rebecca Mercieca-Bebber is supported by a NHMRC Early Career Fellowship #1138100. Rachael L. Morton is supported by a NHMRC Fellowship #1194703. No competing interests are reported.

Acknowledgements

We thank Kanchana Ekanayake, a University of Sydney Academic Liaison Librarian, for consultation during search strategy development.

Availability of data and materials
All included papers can be sourced in the reference list and data is available in the tables included in this manuscript.

Ethics approval and consent to participate

Not applicable.

Author contributions

JN designed this review and protocol, developed the search strategy, screened all papers across all stages, extracted the data, conducted data analysis and synthesis, and developed the main draft of the manuscript. BK contributed to formulating the search strategy, conducted 20% of title and abstract screening and screened all full-text papers and conducted the quality appraisal with JN. CR contributed to the conception and design of the project, results interpretation, writing of the manuscript, and project supervision; had full access to the data in the study; and takes responsibility for the integrity of the data and accuracy of the data analysis. RLM contributed to design of the review, clarification of eligibility criteria, data extraction and synthesis methods (e.g. in supervision meetings and team presentations). RMB, BR, MF, JFL, KS and GH contributed to study design, read, revised and approved the final manuscript.

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The authors declare no competing interests.

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Strategies to promote the completion of patient-reported outcome measures by culturally and linguistically diverse and Indigenous Peoples in clinical care settings: a systematic review.

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Abstract

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Plain English Summary

1. Introduction

1.1 Contributing factors of poor health status for CALD populations

1.2 Contributing factors of poor health status for Indigenous Peoples

1.3 Improving quality of life for CALD and Indigenous Peoples

1.4 Defining CALD and Indigenous Peoples

1.5 Study Aim

2. Methods

2.1 Electronic searches

2.2 Study selection and eligibility criteria

2.3 Screening

2.4 Data Extraction and Synthesis

2.4.1 Quantitative Data

2.4.2 Qualitative Data

2.5 Assessment of methodological quality

2.5. 1 Qualitative Studies

2.5.2 Quantitative Studies

3. Results

3.1 Study inclusion

3.2 Summary of included Papers

3.3 Assessment of methodological quality

3.3.1 Qualitative Papers

3.3.2 Quantitative and Mixed-Methods Papers

4. Findings of the review

4.1 Patient-level enablers and strategies

4.2 Healthcare staff enablers and strategies

5. Discussion

Implications on practice, policy, and future research

Limitations

Conclusion

Abbreviations

Statements and declarations

References

Additional Declarations

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