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Systematic review
Experiences with diagnostic delay among underserved racial and ethnic patients: a systematic review of the qualitative literature
  1. Elena Faugno1,
  2. Alison A Galbraith2,3,
  3. Kathleen Walsh4,5,
  4. Paul J Maglione2,3,
  5. Jocelyn R Farmer6,
  6. Mei-Sing Ong1,7
  1. 1Department of Population Medicine, Harvard Pilgrim Health Care Institute, Boston, Massachusetts, USA
  2. 2Boston University Chobanian & Avedisian School of Medicine, Boston, Massachusetts, USA
  3. 3Boston Medical Center, Boston, Massachusetts, USA
  4. 4Boston Children's Hospital, Boston, MA, USA
  5. 5Harvard Medical School, Boston, MA, USA
  6. 6Beth Israel Lahey Health, Burlington, Massachusetts, USA
  7. 7Harvard Medical School, Boston, Massachusetts, USA
  1. Correspondence to Elena Faugno; elena_faugno{at}hphci.harvard.edu

Abstract

Objective Diagnostic delay is a pervasive patient safety problem that disproportionately affects historically underserved populations. We aim to systematically examine and synthesise published qualitative studies on patient experiences with diagnostic delay among historically underserved racial and ethnic populations.

Data sources PubMed.

Eligibility criteria Primary qualitative studies detailing patient or caregiver-reported accounts of delay in the diagnosis of a disease among underserved racial and ethnic populations; conducted in the USA; published in English in a peer-reviewed journal (years 2012–2022); study cohort composed of >50% non-white racial and ethnic populations.

Data analysis Primary outcomes were barriers to timely diagnosis of a disease. Screening and thematic abstraction were performed independently by two investigators, and data were synthesised using the ‘Model of Pathways to Treatment’ conceptual framework.

Results Sixteen studies from multiple clinical domains were included. Barriers to timely diagnosis emerged at the socioeconomic and sociocultural level (low health literacy, distrust in healthcare systems, healthcare avoidance, cultural and linguistic barriers), provider level (cognitive biases, breakdown in patient-provider communication, lack of disease knowledge) and health systems level (inequity in organisational health literacy, administrative barriers, fragmented care environment and a lack of organisational cultural competence). None of the existing studies explored diagnostic disparities among Asian Americans/Pacific Islanders, and few examined chronic conditions known to disproportionately affect historically underserved populations.

Discussion Historically underserved racial and ethnic patients encountered many challenges throughout their diagnostic journey. Systemic strategies are needed to address and prevent diagnostic disparities.

  • Qualitative research
  • Diagnostic errors
  • Healthcare quality improvement
  • Patient safety

Data availability statement

Data are available upon reasonable request.

https://doi.org/10.1136/bmjqs-2024-017506

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    WHAT IS ALREADY KNOWN ON THIS TOPIC

    • Patients from underserved racial and ethnic populations encounter many challenges throughout their diagnostic journey and are more likely to experience a delay in diagnosis across a range of clinical conditions.

    WHAT THIS STUDY ADDS

    • This novel study summarises the existing body of evidence of 16 qualitative studies detailing patient accounts of delay in diagnosis of disease and applies an existing conceptual framework to examine the resulting themes. Barriers to timely diagnosis emerge from a range of sources, including socioeconomic and sociocultural factors, healthcare providers and health systems. Health literacy, provider bias and fragmented care environments underlined many of the barriers to timely diagnosis.

    HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY

    • Interventions at the health systems level are needed to address diagnostic disparities, and efforts to improve organisational health literacy and cultural competence will be particularly important.

    Introduction

    Diagnostic delay remains one of the most pervasive and harmful patient safety problems.1 Many contributing factors are related to healthcare delivery problems that disproportionately affect historically underserved populations.2 Globally, published studies have consistently shown that underserved racial and ethnic populations are more likely to experience a diagnostic delay in a range of clinical conditions.3–9 A complex interplay of economic, social and cultural factors compounded by institutional bias contributed to diagnostic disparities.

    Existing studies on diagnostic delay primarily apply quantitative methodologies, and there are several existing systematic reviews.10 11 These studies typically drew on clinical and administrative databases to quantify the extent of disparities and the associated factors. In these studies, socioeconomic status was the most reported factor contributing to diagnostic delay. However, the limitations of retrospective data and methodologies preclude in-depth evaluation of the underlying causes of disparities.12 Qualitative studies can provide distinctive insights into the lived experience of patients and their caregivers that cannot be captured in quantitative studies. Here, we systematically examine and synthesise published qualitative studies on the diagnostic experience of underserved racial and ethnic populations in the USA, with the goal of identifying common barriers to timely diagnosis experienced by these patients and their caregivers. To the best of our knowledge, this is the first systematic review of qualitative studies exploring the diagnostic delay experience of underserved racial and ethnic populations in the USA. Due to the uniqueness of the US healthcare system, this review focuses on US-based studies only. Nonetheless, minoritised populations globally experience similar structural inequities and barriers to healthcare access.13 We therefore anticipate that the insights gained from this review will be generalisable to minoritised populations globally.

    Methods

    Design

    We conducted a systematic review of qualitative research evidence to understand the barriers faced by underserved racial and ethnic populations in obtaining a timely diagnosis of disease. This review was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis statement14 and the Enhancing Transparency in Reporting the Synthesis of Qualitative Research statement.15

    Data sources

    We searched PubMed for English-language articles published between January 2012 and December 2022. Our search strategy was developed for MEDLINE using PubMed with a combination of keyword terms (online supplemental materials). Citations from each database were imported into a reference management system, and duplicates were removed.

    Supplemental material

    Study selection

    Criteria to select studies for inclusion in the review were as follows: qualitative studies (including interview, focus group and ethnography) detailing patient or caregiver-reported accounts of delay in the diagnosis of any condition among underserved racial and ethnic patients; conducted in the USA; available in English; published in a peer-reviewed journal. We included studies that did not explicitly address the experiences of only underserved racial and ethnic patients but had a study cohort with ≥50% non-white patients. Dissertations and published abstracts were excluded.

    Two reviewers (EF, M-SO) independently screened citations for inclusion using a two-stage approach. We first screened the titles and abstracts against the inclusion criteria; we then screened the full-text papers identified in the initial screen. Conflicts were resolved by consensus. To ensure sufficient concordance between reviewers, a pilot review was conducted, whereby reviewers reviewed a small subset of abstracts together to assess the practicality and validity of our data collection tool, analysis and interpretation before proceeding with the remaining studies.

    Data synthesis

    The primary outcomes of interest were barriers to timely diagnosis of a disease experienced by underserved racial and ethnic populations. Delayed diagnosis refers to a case where a diagnosis should have been made earlier.16 We constructed a standardised form to record the following data for each reviewed paper: method and participants, disease under study and barriers to time diagnosis. We then applied a ‘best-fit framework synthesis’ method to identify and classify themes related to barriers to timely diagnosis, using the ‘Model of Pathways to Treatment’ conceptual framework17—a well-established framework that provides a systematic approach to understanding pathways to care (figure 1). The model identifies five key events in the pathway to care: (1) detection of bodily changes, (2) perceives reasons to seek help, (3) first consultation with healthcare provider, (4) diagnosis and (5) start of treatment. These events are separated by four intervals: (1) patient appraisal, (2) help-seeking, (3) diagnosis and (4) pretreatment. The model also identifies three main types of contributing factors that influence the timing of events, including patient-related, health systems and disease-related factors. We adapted this framework to explore patients’ diagnostic pathway from symptom recognition to clinical diagnosis, focusing on barriers experienced by underserved racial and ethnic populations. We further added to the framework provider-related factors leading to diagnostic delay. Patients’ health behaviours are often shaped by economic, societal and cultural factors. To more accurately capture these upstream drivers of health behaviours, we replaced ‘patient-related factors’ in the framework with ‘socioeconomic and sociocultural factors’; the latter is defined as societal and cultural influences that impact thoughts, behaviours and ultimately health outcomes (eg, language, belief and value systems, attitudes).18

    Figure 1
    Figure 1

    Model of pathways to treatment. Our study considered only events leading up to diagnosis; treatment-related events following diagnosis of a condition were not considered.

    Results

    The systematic literature search yielded 1475 abstracts, of which 16 met the inclusion criteria and were included in the final review (figure 2). Table 1 summarises the characteristics of the included studies. Adapting the Model of Pathways to Treatment, we summarise below the barriers faced by underserved racial and ethnic populations at each step of the diagnostic pathway.

    View this table:
    Table 1

    Characteristics of studies

    Figure 2
    Figure 2

    Preferred Reporting Items for Systematic Reviews and Meta-Analysis selection criteria flowchart.

    Patient appraisal

    Patient appraisal is the first step in the diagnostic pathway, representing the time from detection of a bodily change to perceiving a reason to discuss symptoms with a healthcare provider. We summarised below factors affecting how patients understand and respond to their symptoms.

    Socioeconomic and sociocultural factors

    Patients’ health literacy—defined as the ability to find, understand and use information to make health-related decisions for themselves,19 affected patients’ perception that they needed to seek medical care. Patients frequently reported having no prior knowledge of a disease. This theme was especially pervasive in studies related to sexual health and developmental disorders. In a study on HIV, a patient remarked that: ‘I do not believe that I’m at risk for HIV. I am not gay. Only the gay men get HIV’.20 In another study on cervical cancer, some women did not perceive the need to be screened because they were not sexually active.21 In a study on autism spectrum disorder (ASD), many black families reported not being aware that ASD could occur as frequently in black children as white children.22 A further study reported a lack of knowledge about ASD in the Latine community, which impeded early recognition and diagnosis of ASD: ‘…in Mexico we don’t have a diagnosis of autism. No one knows about it’.23

    Healthcare avoidance, driven by socioeconomic and sociocultural factors, was also a prominent theme. Having competing demands and the inability to take time off work were often cited as reasons for delayed care.21 Women were more likely than men to downplay the severity of symptoms,24 25 particularly black women with competing priorities of being both the primary caregiver and the financial provider of their family.25 26 Some patients reported being fearful of being diagnosed with a serious condition20 21 26–28 or being stigmatised by their community. Surratt et al28 reported medical avoidance among individuals experiencing homelessness and mental health and substance use disorders, emphasising the impact psychosocial factors can have on health-seeking behaviours: ‘My life is already crap, so why should I go get tested? I’m already living on the street, so I might as well die anyway’.

    Health systems factors

    Deficiencies in institutional health literacy were a major systems factor contributing to health literacy disparities among minoritised populations. Institutional health literacy is defined as the degree to which an organisation helps or hinders a patient from having health literacy by ensuring equitable access to information and services that would enable informed health-related decisions.19 Many patients reported a lack of patient outreach and educational programmes that were culturally and linguistically appropriate.23 27 In a study on colorectal cancer, a Latine patient remarked: ‘I don’t know anything about cancer… We need information out there… But I don’t see it in Spanish…’23 These knowledge deficits affected patients’ perception that the symptoms they experienced needed medical care.

    Disease-related factors

    Across all racial and ethnic groups, atypical presentation or non-specific symptoms that could be explained by other causes also contributed to delayed decision to seek medical care. For example, some patients with colon cancer misattributed the initial symptoms of colon cancer (eg, loss of appetite and weight loss) to a pre-existing condition.27 Another study reported lactating women misattributing physiological changes to their breasts caused by breast cancer to breastfeeding.29

    The stigma associated with certain conditions also influenced individuals’ willingness to seek care. For example, developmental disorders in children were a major barrier to the uptake of developmental screening among American Indian and Alaska Native (AIAN) children30 and ASD screening among black families: ‘It’s this stigma that’s associated with (disability). Retardation is the Black bubonic plague… People are scared’.22 Similarly, the stigma associated with HIV was a barrier to HIV screening among black female sex workers and the Latine LGBTQ community.20 28

    Patient help-seeking

    A patient seeking help for their symptoms is the second step in the diagnostic pathway, whereby the decision to seek help is made and arrangements are put in place. We summarised below factors affecting patients’ ability or willingness to seek help from health professionals.

    Socioeconomic and sociocultural factors

    A patient’s socioeconomic status continued to be a significant barrier. Competing work and family commitments were frequently cited as a reason for delay in seeking care,21 23 26 27 29 particularly among black women.21 26 29 Furthermore, geographic distance from providers,23 30 a lack of transportation,20 22 23 28 29 31 and a lack of insurance or high out-of-pocket cost sharing were major deterrents to seeking care.20–24 27 29 31

    Cultural norms and values play a major role in determining a patient’s help-seeking behaviour. A reliance on faith healing, alternative holistic practices and home remedies21 27 coupled with the belief that families are better at addressing healthcare needs of their members22 kept many patients from seeking medical care. Among Latine communities, cultural notions of masculinity at times led to fear and embarrassment in seeking medical care.23 27 For example, some Latine fathers perceived their child’s illness as a personal failure and would discredit the mother’s concerns about the child.23 or would refuse to undergo rectal examinations since it was seen as a physical violation.22 Several black or Hispanic women reported discomfort in undergoing vaginal examinations or discussing sexual and reproductive health issues with providers,26 especially those of discordant gender.21 26 One patient commented that ‘women’s health issues (are) dealt with at home’; others reported that their male partners viewed female health screening tests as a violation of privacy.26 Some women further stated that cervical cancer screening and immunisation were against their religious beliefs.21

    Institutional distrust, stemming from historical traumas or prior experience of unequal treatment, was also a major deterrent for patients to engage with healthcare systems.22 23 30 Notably, among AIAN communities, childhood developmental screening and subsequent interventions were perceived as attempts to acculturate AIAN children, as one parent remarked ‘seeking help outside your family is a colonisation issue’.30 Some parents expressed concern that their children would be taken away from them if screening identified problems.30 Among some black patients, the belief that publicly insured and black patients were treated differently was also a deterrent to seeking medical care.22 Some black parents also expressed fear that a diagnosis of developmental disability would lead to further mistreatment or abuse of their children by healthcare systems.22

    Privacy concerns were a common theme, particularly when a disease was stigmatised in a community, such as HIV or developmental disorders: ‘You are always bound to know someone or be related to someone in Indian communities’.30 Many patients were embarrassed to discuss their symptoms with their healthcare providers.22 24 27 32 Some black or Hispanic women reported discomfort speaking in the presence of an intermediary, such as a medical interpreter, for fears of confidentiality breach.26 Finally, patients expressed concerns about the need to disclose their immigration status if they were to receive medical care.33 34

    Health systems factors

    Administrative complexity of healthcare systems, coupled with deficiencies in institutional health literacy, contributed to delay in accessing care.35 A recurring theme was the challenges faced by underserved racial and ethnic populations in navigating healthcare systems. Patients reported being unsure of where and how they could get accurate information on the services that were available. Language barriers further compounded the challenges faced by patients.23 26 Some patients reported difficulties in obtaining available clinic appointments, connecting to the appropriate referral services or providers, and accessing interpreter services.21 23 31 36 Furthermore, administrative staff often did not know what services were available for uninsured patients21 or how to refer uninsured patients29 and patients requiring affordable care.27

    Diagnosis

    Diagnosis—the final step on the diagnostic pathway—describes the time between the first appointment with a healthcare provider and the formal diagnosis being made. Once a patient seeks healthcare, there is an iterative process of information gathering, information integration and interpretation, and determining a working diagnosis.

    Provider-related factors

    Breakdown in patient-provider communication and relationship was the most salient factor contributing to delays in diagnosis during the diagnosis phase. Many providers failed to communicate diagnostic results and medical decisions effectively. Patients reported that they did not understand the purpose of the diagnostic appointment,21 27 or the significance of an abnormal test result.31 Some were overwhelmed by the information presented to them and therefore chose not to follow-up on referrals or additional visits.27 One of the most common concerns raised by patients was that they were not engaged in shared decision making—their providers either failed to inquire about their concerns or that their concerns were dismissed or minimised.22 23 29

    Some patients perceived racial biases in their providers. For example, some black women felt that their doctors physically did not want to touch them and thus either neglected to do an exam or did a less thorough exam.21 Furthermore, some Latine patients felt that their providers underestimated their level of education or understanding23 and some black parents felt judged for their child-raising practices or their ability to deliver therapeutics at home.22 Erosion of trust led many patients to decline follow-up appointments, resulting in delays in diagnosis.22 24 27

    There were further indications that cognitive biases may have influenced clinical judgement, whereby an incorrect diagnosis was made based on social identity. For example, several Latine patients with colorectal cancer were initially misdiagnosed and treated for haemorrhoids and digestive issues attributed to eating spicy foods or intestinal parasites. One patient was diagnosed with colorectal cancer 3 years after he sought care for his symptoms: ‘I went to the doctor because my stomach always got really swollen. The doctor said, ‘no, you came from South America, and there the water is very contaminated’. I said: ‘but doctor, does that make me bleed?’ He said, ‘those are the complications the bacteria cause.’27

    Sociocultural factors

    Institutional distrust was an important barrier to timely diagnosis of a disease, leading to patients withholding pertinent information from their providers21 23 30 and questioning the legitimacy of test results.30 31 For example, a study reported that several black women who had immigrated from other countries believed that physicians benefit financially from Papanicolaou tests.21

    Health system factors

    Deficiencies in cultural competence at the institutional level, defined as the ability to effectively deliver healthcare services that meet the social, cultural and linguistic needs of patients, underlined many of the challenges encountered by underserved racial and ethnic patients in the diagnosis process. Many patients expressed concerns about not having the information necessary to navigate the diagnostic process. Language barriers and poor quality of medical interpreters led to difficulties in communicating with healthcare providers,23 26 again highlighting the important role of organisational health literacy. AIAN communities further reported diagnostic practices that were not culturally sensitive. Of note, the design of the childhood developmental screening tool failed to account for the cultural norms of AIAN communities.30 For example, questions about behaviours used to indicate potential social or behaviour problems were in fact culturally appropriate behaviours (eg, avoidance of eye contact, being quiet and reserved).

    Fragmented care was also a prominent systems factor contributing to diagnostic delay. The complexity of the diagnostic process often involves multiple providers from different specialties; many small delays in getting appointments with individual providers cumulatively resulted in lengthy delays. Underserved populations, particularly immigrants with limited understanding of the US healthcare system, were especially vulnerable to ‘slipping through the cracks’.23 Poor coordination of care resulted in the loss of patient follow-up and delays in diagnosis.36

    Disease-related factors

    Atypical presentation or non-specific symptoms led to misdiagnosis or missed diagnosis in several cases. For example, some patients with colorectal cancer were initially misdiagnosed and treated for haemorrhoids or digestive issues.27 Missed diagnoses were especially common among younger patients for whom the risk of disease is usually low.27 32

    Facilitators to timely disease diagnosis

    Several facilitators for timely diagnosis were identified in the studies reviewed. Notably, having a primary care provider was an important facilitator for access to diagnostic screening. Several sex workers who identified as black women cited supportive and confidential environments, as well as increased access to support services such as mobile clinics and integrated health services, as facilitators to getting HIV testing.28 Displays of empathy by administrative staff and persistent, non-judgmental follow-up by providers served as facilitators to patients seeking help: ‘She kept kindly, politely pestering me to come in for that mammogram… I wouldn’t have finally ended up getting that mammogram if it wasn’t for her’.29 Many black women identified motivation from family or friends to adopt positive healthy behaviour as a reason for seeking diagnosis: ‘The biggest factor is my six year-old son, and I wanted to be around to see him grow…’26

    Discussion

    Patients from underserved racial and ethnic populations encountered many challenges throughout their diagnostic journey, with barriers to timely diagnosis emerging from a range of sources, including socioeconomic and sociocultural factors, healthcare providers and health systems (figure 3).

    Figure 3
    Figure 3

    Themes identified from the studies reviewed.

    Socioeconomic and sociocultural factors

    Patients’ help-seeking behaviours were shaped by their values, beliefs and levels of health literacy, which in turn influenced the level of care they received. Patients’ trust in the healthcare system and health professions, shaped by both historical and ongoing discrimination, directly influenced their willingness to engage with the healthcare system and to accept physicians’ recommendations. In addition, cultural barriers and socioeconomic factors frequently led to medical avoidance. Although many of these factors affect individuals of all racial and ethnic backgrounds, published studies have shown that underserved racial and ethnic populations avoided medical treatment at higher rates than white individuals, and prior experiences with inadequate care due to discrimination contributed to higher rates of medical avoidance.37 38 Once the decision to seek care was made, health literacy and linguistic barriers influenced patients’ ability to navigate the healthcare systems and to advocate for their own healthcare needs. To address these barriers, the National Academy of Medicine recommended the implementation of culturally sensitive patient education programmes to improve patients’ participation in clinical decision making and care-seeking skills, knowledge and self-advocacy.2 This field of research is still in its infancy; rigorous studies are needed to evaluate the effectiveness of patient education programmes of varying modalities (eg, online programmes, faith-based outreach) in improving diagnosis among underserved racial and ethnic populations.

    Provider-level factors

    The diagnostic process is a complex, collaborative activity that involves a continuous process of information gathering and clinical reasoning.39 This process requires effective patient-provider communication tailored to the patient based on their needs, values and preferences, with a cognizant effort on the part of the providers to ameliorate the power differential that exists within the relationship. In many of the studies reviewed, breakdowns in patient-provider communication or relationships were major factors driving diagnostic delay. Providers’ failure to communicate health information in an accessible and culturally sensitive manner led to confusion, erosion of trust and patient disengagement. Furthermore, cognitive biases, shaped by a provider’s perception of a patient’s race or ethnicity, influenced both diagnostic communication and clinical reasoning. These studies point to the need to improve providers’ cross-cultural communication skills and to cultivate culturally affirming care. Unconscious cultural stereotyping among physicians has been documented in a number of studies.40–42 However, there remains a lack of evidence-based de-biasing strategies.43 44 Mindful practice may help guard against biases.45 For example, reflective practice by taking an intentional pause during the diagnostic process to ask the question: ‘if the patient had a different social identity, would I consider an alternative diagnosis?’ can potentially decrease implicit biases in clinical reasoning.44 46 Individuation, the deliberate effort to focus on individual patients’ information apart from their social group, can facilitate diagnostic evaluation based on personal and not stereotyped attributes.41

    Health systems factors

    Health systems factors underlined many of the barriers to timely diagnosis faced by patients from underserved racial or ethnic groups. Inequity in organisational health literacy not only contributed to poor understanding of disease and accessibility of information that can help patients make appropriate health decisions, but it also limited their ability to participate actively in the diagnostic process. Lack of cultural competence at the organisational level promoted distrust and patient disengagement. Additionally, administrative barriers and structural racism (ie, ways in which societies foster racial discrimination through mutually reinforcing systems of housing, education, employment, healthcare and criminal justice)47 limit access to care for patients from underserved racial and ethnic groups. In a fragmented care environment, disparities in care were further exacerbated.

    Addressing these systemic barriers is crucial to improve timely diagnosis for underserved populations. Systemic interventions should include policies that reduce administrative, linguistic and economic barriers to care. Access to professional interpreters, for example, has been shown to improve the quality of care.48 However, efforts are needed to address confidentiality and privacy concerns individual patients may have when using an interpreter. Additionally, there is a need to implement practices that close the mismatch between patients’ literacy skills and the literacy-related demands of the healthcare settings. Importantly, cultivating cultural competence and humility should be a priority of all healthcare organisations. Finally, patients should be recognised as vital partners in the diagnostic process, and the healthcare system needs to encourage and support their engagement.40 A toolkit for engaging patients in the diagnostic process, designed by the US Agency for Healthcare Research and Quality, can be a useful strategy for improving diagnostic safety among underserved populations.49

    Strengths and limitations

    The studies reviewed covered a range of clinical conditions, providing diverse perspectives and insights from different populations. While there is no statistical standard for qualitative work, most studies (n=12) had robust sample sizes of more than 20 participants, increasing the chances that thematic/theoretical saturation was reached. This review is, however, limited to published studies in the USA. Nonetheless, many of the drivers of diagnostic inequities identified in our review have been documented in other published works globally. For example, sociocultural barriers to timely diagnosis (including reliance on traditional treatments, cultural and linguistic barriers) have been reported among minoritised populations in Australia, the UK and African countries.50 51 Similarly, health systems barriers such as inequity in organisational health literacy and lack of cultural competence at the institutional level affect minoritised populations worldwide.52 However, the USA is the only wealthy industrialised country that does not provide universal health insurance. Thus, unique to the USA, lack of insurance is an important contributing factor to delayed diagnosis among underserved populations and many of the structural barriers to care are exacerbated as a result.53

    Gaps in current research

    The small number of qualitative studies investigating diagnostic delay among patients from underserved racial and ethnic populations does not commensurate with the extent of the problem. Of note, there is a paucity of qualitative studies on high-morbidity chronic conditions known to disproportionately affect minoritised populations, such as diabetes and heart disease, despite the extent of published quantitative studies demonstrating disparities in the diagnosis of these conditions.54–56 Published quantitative studies have also consistently shown disparities in the diagnosis of mental health conditions.57 Yet, there is a lack of qualitative studies exploring the diagnostic experience of minoritised patients with mental health conditions. Importantly, none of the existing studies explored diagnostic disparities among Asian Americans and Pacific Islanders. Future research is needed to understand barriers to timely diagnosis in these populations.

    Conclusion

    Patients from underserved racial and ethnic populations face many barriers to care throughout the diagnostic process. While this systematic review provides important insights into their experience, substantial gaps in knowledge remain. Because diagnostic delay can lead to a cascade of events that perpetuate health disparities, more research is needed to understand and address barriers to timely diagnosis in these marginalised populations.

    Data availability statement

    Data are available upon reasonable request.

    Ethics statements

    Patient consent for publication

    Ethics approval

    Not applicable.

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    Footnotes

    • X @CHeRP_DPM

    • Contributors M-SO is the primary investigator of this study. She secured grant funding for this project, did abstract and text screening, data extraction and manuscript writing. She is the guarantor of this study. EF did abstract and text screening, data extraction, primary qualitative coding, was the primary author and provided project management support. AAG, KW, PJM and JRF provided clinical expertise as well as edited and reviewed the manuscript.

    • Funding This study was funded by National Institute on Minority Health and Health Disparities of the National Institute of Health (R01MD017816).

    • Competing interests EF’s spouse has served as a consultant for Moderna with no direct relation to the work presented. JRF is an ongoing consultant for Pharming and has received investigator-initiated research grants from Pfizer, Bristol-Myers Squibb and Pharming with no direct relation to the work presented. M-SO has received investigator-initiated research grants from Pfizer and Pharming with no direct relation to the work presented. PJM has served as a consultant for Pharming, provided an educational lecture for Takeda employees and received investigator-initiated research grants from Horizon and Takeda with no direct relation to the work presented.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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