Table 2 Summary of study characteristics

Inflammatory Bowel disease

Alexakis et al. [43] UK

1. CD (13); UC (6); Other (1)

2. 20 patients

3. South Asian (17; 7 Pakistani, 5 Bangladeshi, 3 Indian, 1 Sri Lankan, 1 Nepal); Mixed white/Asian (1), Black (2)

4. 16-24; male (13); female (7)

5. English; Muslims (13), Christian (2), Hindu/Buddhist (2), Other/Agnostic (2), Mormon (1),

1. Qualitative

2. Interviews

3. Nil; appears purposive

4. Three gastroenterology clinics

e. Semi-structured interview to explore experiences

Culturally appropriate IBD information was needed for South Asian parents who had low awareness due to factors such as language barriers. Young people also experienced tensions between effective self-management strategies (e.g., dieting, and religious coping) and cultural norms and practices e.g., spicy food and interruption of prayer for bowel movements. Common experiences across ethnicities included difficulty attaining diagnosis/misdiagnosis and experiencing poor support from primary care services and the educational system.

Detailed data; data saturation; pilot study/small sample for generalisation; ethnic mismatch of interviewer and interviewee

CASP 4*

Conroy and Mayberry [45] UK

1. UC

2. 56 patients

3. South Asians

4. Nil; nil

5. English, Hindi, Gujarati, Punjabi

1. Survey-based

2. Survey; questionnaire and telephone/post contact

3. Not stated; appears purposive

4. Healthcare IBD register

e. Postal survey measured initial demand for UC information; follow-up questionnaire measured UC information needs; follow-up telephone and post contact to encourage a good response rate

There was a need for English information on UC to be translated into South Asian languages. Majority of patients provided positive feedback for leaflets offered in English, Hindi, Gujarati, and Punjabi. All patients found the leaflets useful.

Language accommodation/low response rates

CEBMa 3*

Damas et al. [50] USA

1. IBD including CD (12) and UC (17)

2. 58 (29 IBD patients, 29 non-IBD control)

3. Hispanics—Cuban, Colombian or Other Latin American

4. Over 18; male (11 control, 14 IBD)

5. English, Spanish

1. Cross-sectional case-controlled

2. Questionnaires

3. Not stated; appears purposive

4. University-based gastroenterology clinics

e. Abbreviated Stephenson Multi-Group Acculturation Scale

e. A 24-h diet recall (the ASA-24)

e. The Healthy Eating Index (HEI-2010) measured diet quality

Hispanics were mainly bicultural. Most changed their diet after immigration. Patients and controls had poor eating habits, irrespective of the presence of IBD e.g., lower than recommended consumption of total vegetables, legumes, whole grains, and sea plant protein. Compared to controls, non-control patients reported lower intake across all items, particularly total fruit, whole fruit, and total dairy. Non-control IBD patients had higher consumption of sodium, refined grains, and empty calories e.g., alcohol, solid fats and added sugars.

Representative sample from different countries/small sample size; daily nutrition may differ depending on disease activity

CASP 3*

Farrukh and Mayberry [46] UK

1. UC

2. 70 patients

3. South Asian (28), White European (42)

4. 16-24; male (16 South Asian, 22 European); female (12 South Asian, 20 European)

5. English and South Asian (unspecified)

1. Retrospective case-controlled

2. Cases

3. Not stated; appears purposive/convenience

4. Three hospitals and community hospital notes

c. Record case notes of 1996–1998 and clinical records measured clinical outcomes on surgery and deaths

Surgical and death rates were the same for both South Asians and White Europeans. However, there were differences in provision of care, where South Asians received poorer quality clinical care than Europeans e.g., South Asians were significantly less likely to see a consultant and more likely to be discharged. South Asians were hospitalised more often but had significantly fewer tests than European patients. More screening colonoscopies were offered to Europeans than South Asians, although non-significant.

/Retrospective analysis and 29% of case records have been destroyed, were incomplete or could not be retrieved

CASP 3*

Jackson et al. [51], USA

1. CD

2. 99 patients

3. African American (55); Whites (44)

4. mean age 32 White, 30 African American; male (50; 26 African American, 24 white); female (49; 29 African American, 20 white)

5. Nil

1. Retrospective case-controlled

2. Interviews; cases; survey

3. Not stated; appears purposive/convenience

4. Three gastroenterology clinics

c. Telephone interviews; chart reviews; standard evaluations; surveys, measured disease location, surgery, and medication use

c. Patient statements measured compliance

c. Clinician assessment measured CD diagnosis

CD may be different in African Americans compared to White patients: small bowel disease and small bowel resection was more frequent in White patients. Colonic disease and perirectal fistulae were more frequent in African Americans. White patients sought care for their CD in a clinic setting and reported greater/complete compliance with medical therapy. African Americans more frequently discontinued medical therapy. Both groups felt equally informed about CD, but a greater percentage of White patients felt that their disease was under good control.

/Most African Americans were recruited from a hospital with costly medications

CASP 4*

Goodhand et al. [47], UK

1. IBD

2. 238 patients

3. Bangladeshi (119); White Caucasian (119)

4. Mean (SEM) 29.6 (1.1) Bangladeshi, 30.9 (1.1) White; male (72 Bangladeshi; 52 White Caucasian); female (47 Bangladeshi, 67 White Caucasians)

5. Nil

1. Retrospective case-controlled

2. Cases

3. Case-based

4. IBD outpatient clinic

c. Electronic patient record and IBD database measured demographic data on place of birth and year of migration

d. Online Acorn database measured socio-economic data

There were no differences in adjusted age at diagnosis of IBD between Bangladeshis and White Caucasians. Compared to Caucasians, more Bangladeshis were diagnosed with CD than UC. Crohn’s phenotype at diagnosis was similar in both groups. But Bangladeshis developed perianal complications and received anti-TNFs earlier and underwent surgery later than White Caucasians. More Bangladeshis with UC had extensive disease, and were anaemic and vitamin D deficient, compared to Caucasians.

Bias avoided by matching diagnosis age; accurate phenotyping in single cohort/interpretation and missing data bias; small sample size

CASP 4*

Mukherjee et al. [48], UK

1. IBD including CD (18) and UC 14 and unclear (1)

2. 33 patients

3. South Asians (20 Indian, 9 Pakistani, 4 Bangladeshi)

4. 18-65; male (13); female (20)

5. Bengali, Gujarati, Hindi, Punjabi, Urdu, Mirpuri, English; Muslim (16), Hindu (9), Sikh (7), no faith (1)

1. Qualitative

2. Interviews

3. Purposive

4. Five gastroenterology clinics

e. Telephone and face-to-face interviews to explore experiences and met and unmet need for support

IBD experience influenced by South Asian culture; low awareness meant that the community had difficulty understanding IBD, and religion; difficulties performing ablution and praying. Mostly positive experiences of gastroenterology services, though there was a focus on medical treatment and language barriers existed. There was an emotional toll (e.g., anxiety) that influenced involvement in activities when symptom free. Practical and emotional support was missing in immediate and extended family. Majority adhered to prescribed medication, but also used complementary and alternative medicine.

Representation of South Asians; interviewer living with IBD/time and resources; people over 65 were not recruited; mostly English-speaking participants

CASP 4*

Nash et al. [49] UK

1. CD (13); UC (6); CD and UC (1)

2. 20 patients

3. South Asians (17); Mixed Asian and White (1); Black (2)

4. 17–24; male (13); female (7)

5. English; Islam (13); Christian (2); Agnostic/No religion (2); Hindu (1); Hindu/Buddhist (1); Mormon (1)

1. Qualitative

2. interviews

3. Opportunistic/convenience

4. Three hospitals

e. Telephone and face-to-face interviews measured social inclusion and experiences

Experiences influenced by sociocultural factors such as culture; conflict of diet choices from low awareness of South Asian parents who have English as a second language, and religion; Islamic religious self-management was beneficial. Need for culturally appropriate information for parents, support from schools (mentoring, peer support) and healthcare professionals (communicating information to parents), and family counselling. There were both positive and negative healthcare service encounters. Generic experience across ethnicities included secrecy about IBD, social isolation, diagnosis delays/misdiagnosis and disruptions to education.

Rich data; data saturation/generalisation to the local population

CASP 4*

Nguyen et al. [52] USA

1. IBD including CD and UC

2. 235 patients

3. Black (120); White (115)

4. over 18/nil

5. English

1. Cross-sectional survey-based component of a longitudinal study

2. Telephone questionnaire

3. Purposive

4. IBD outpatient clinic

b. SIBDQ measured QOL

c. Chapel Hill Index/Simple Colitis Clinical Activity Index measured disease severity

c. HBCS measured medication adherence and appointments

d. TIPS

Overall adherence was 65% for both ethnicities. Higher adherence correlated with greater trust-in physician, increasing age and worsening health-related QOL. Adherence was also higher among White patients compared to Black patients. Trust-in-physician, race, and age remained predictors of adherence to medical management after adjustment for employment, income, health insurance, marital and socioeconomic status, and immunomodulator therapy.

Adherence measured during asymptomatic periods/all White physicians; potential bias in oversampling older patients; self-reported data

CEBMa 3*

Strauss et al. [53] USA

1. CD

2. 552 patients

3. Black (145); White (407)

4. Mean age 39 Black, 44 White; male (29 Black); female (37 white)

5. English

1. Case-controlled

2. Survey

3. Convenience

4. Four teaching hospitals and five private practices

b. Medical Outcomes Study Short Form 36 (SF-36) Health Survey measured health status and functioning

c. CD aActivity Index (CDAI); the Chapel Hill Index disease activity

c. Survey on demographic, surgical and hospitalisation data, medication/compliance history, healthcare utilisation/access

Both ethnicities have similar disease presentation and course e.g., age of CD onset, lag in diagnosis time, frequency of gastroenterology-related hospitalisations and surgeries, and medication use. However, there were also differences: Black patients had lower QOL for all categories compared to Whites. White patients were more likely to have health insurance and could identify a regular provider compared to Black patients

Representative sample; good sample size/recall and information bias; generalisability of findings outside tertiary care hospitals

CASP 4*

Yarur et al. [55] USA

1. IBD including CD and UC

2. 142 patients

3. Hispanic (67; 2 Black), non-Hispanic (75; 17 Black)

4. Nil; male (74); female (24 Hispanic, 43 non-Hispanic)

5. Nil

1. Case-controlled

2. Cases

3. Case-based

4. IBD outpatient clinic

c. Inpatient and outpatient medical records measured predictive pre-operative variables and post-operative outcomes

A small increase in post-operative complications in Hispanics compared to non-Hispanics with equal access to medical care and follow-up, but this did not reach significance. Factors independently associated with postoperative complications included diagnosis of UC, preoperative albumin levels, smoking, and use of C20 mg of Prednisone.

Included a wide range of medical and surgical complications and severity

/Small sample size; did not account for difference in resource utilisation

CASP 3*

Irritable Bowel syndrome

Taft et al. [54] USA

1. IBS

2. 243 patients

3. Caucasian (214); non-Hispanic (221); Hispanic (22) [as reported by authors]

4. Total mean age 8.7 + 13.5; male (nil); female (209)

5. nil

1. Cross-sectional survey-based

2. Questionnaires

3. Not stated; appears purposive

4. One university-based outpatient gastroenterology clinic, online sources and five private practices

a. ISMI; modified for IBS scale for mental illness

a. PSS-IBS

c. Clinical data measured IBS subtype, diagnosis duration, symptom duration prior to diagnosis and symptom frequency

Hispanics reported more perceived stigma for personal relationships and healthcare professionals, compared to non-Hispanics, suggesting that there might be cultural differences in IBS-related stigma experience and highlighting the importance of cultural competence in working with Hispanics with IBS.

/Small sample size; generalisability; not powered to detect differences

CEBMa 3*

Wong et al. [56] Malaysia

1. IBS

2. 16 patients

3. Chinese (8); Indian (5); Malay (3)

4. Median age 67 (13.6); male (6); female (10)

5. Nil

1. Pilot observational cohort

2. Cases/telephone interviews

3. Purposive/convenience

4. Dietetic gastroenterology clinic

c. Patient records and prospective telephone interviews measured detailed dietary assessments and self-reported symptom record sheet

Compliance with a low FODMAP diet was poor. For patients who complied (complete/partial) with the diet, symptom improvement was reported as: abdominal pain, abdominal bloating/distension and flatulence. Patients with the IBS-D subtype had the greatest improvement in stool consistency.

/Representation of older and female Malaysians; subjective assessment of IBS symptoms

CEBMa 4*

Coeliac disease

Butterworth et al. [44], UK

1. Coeliac disease

2. 130 patients

3. South Asian (40), White Caucasian (90)

4. Over 16; male (27 White Caucasian, 9 South Asian); female (39 White Caucasian, 12 South Asian)

5. Various (unspecified)

1. Cross-sectional survey-based with case note review

2. Questionnaires; cases

3. Not stated; appears purposive

4. Hospital clinic database

c. Patients’ notes measured small bowel histology and endomysial antibody status at follow-up

e. Questionnaire measured experiences of living with coeliac and GFD

Compared to White Caucasians, South Asians managed GFD sub-optimally and needed culturally relevant education. South Asians were less likely to attend dietic clinics, join the Coeliac Society and they were more dissatisfied with information provided by doctors and dieticians compared to White Caucasians; they were dissatisfied with dietic advice. There was a correlation between the perception of a strict GFD and normal or near normal small bowel histology and negative endomysial antibody status at follow-up for White Caucasians.

Generalisation of findings/low questionnaire response due to language or literacy issues

CEBMa 3*