An inter-humanitarian agency study of diabetes care and surveillance in humanitarian settings

Abstract

Humanitarian crises and diabetes have been increasing at an unrelenting pace, especially in low-income and middle-income countries.1United Nations Office for the Coordination of Humanitarian Affairs (OCHA)Global Humanitarian Overview 2021.https://www.unocha.org/global-humanitarian-overview-2021Date: 2020Date accessed: January 26, 2022Google Scholar Over 80% of the global displaced population live in low-income and middle-income countries, which host 81% of the global diabetes population.2Global trends: forced displacement in 2020. United Nations High Commissioner for Refugees (UNHCR), Copenhagen2021https://www.unhcr.org/uk/statistics/unhcrstats/60b638e37/global-trends-forced-displacement-2020.htmlDate accessed: January 26, 2022Google Scholar Furthermore, for 77% of refugees, the average duration of displacement is more than 20 years.2Global trends: forced displacement in 2020. United Nations High Commissioner for Refugees (UNHCR), Copenhagen2021https://www.unhcr.org/uk/statistics/unhcrstats/60b638e37/global-trends-forced-displacement-2020.htmlDate accessed: January 26, 2022Google Scholar Despite projections of further increases in the prevalence of diabetes and humanitarian crises, evidence on best practice interventions to guide feasibility and effectiveness of diabetes care delivery in humanitarian settings is lacking.3Kehlenbrink S Jaacks LM Diabetes in humanitarian crises: the Boston Declaration.Lancet Diabetes Endocrinol. 2019; 7: 590-592Summary Full Text Full Text PDF PubMed Scopus (8) Google Scholar, 4Kehlenbrink S Smith J Ansbro É et al.The burden of diabetes and use of diabetes care in humanitarian crises in low-income and middle-income countries.Lancet Diabetes Endocrinol. 2019; 7: 638-647Summary Full Text Full Text PDF PubMed Scopus (33) Google Scholar, 5Jaung MS Willis R Sharma P et al.Models of care for patients with hypertension and diabetes in humanitarian crises: a systematic review.Health Policy Plan. 2021; 36: 509-532Crossref PubMed Scopus (7) Google Scholar This was highlighted in the Boston Declaration, which outlined a priority agenda for addressing diabetes in humanitarian crises, including the need for improved data and surveillance.3Kehlenbrink S Jaacks LM Diabetes in humanitarian crises: the Boston Declaration.Lancet Diabetes Endocrinol. 2019; 7: 590-592Summary Full Text Full Text PDF PubMed Scopus (8) Google Scholar Most data collected by humanitarian organisations, while providing humanitarian assistance, do not feature in academic literature. Diabetes prevalence, organisational practices, and barriers to care in these contexts are poorly understood.4Kehlenbrink S Smith J Ansbro É et al.The burden of diabetes and use of diabetes care in humanitarian crises in low-income and middle-income countries.Lancet Diabetes Endocrinol. 2019; 7: 638-647Summary Full Text Full Text PDF PubMed Scopus (33) Google Scholar Therefore, as part of thee Humanitarian NCD Interagency Study in Emergencies and Disasters (UNITED), we convened a consortium of four humanitarian organisations (International Committee of the Red Cross, International Rescue Committee, Médecins Sans Frontières, and UN High Commissioner for Refugees) to assess current diabetes data collection practices, diabetes services, and key barriers to care in areas of humanitarian crisis. We surveyed 83 randomly selected sites across 27 countries in five global regions to assess diabetes care in humanitarian medical services provided in 2018 (appendix p 2). Among the 83 sites, 65 (78%) collected diabetes care data and were included in the analysis; most of these sites were in the eastern Mediterranean (29 [45%] of 65) and Africa (23 [35%]; appendix p 5). Characteristics of the 18 sites that were not included in the analysis are in the appendix (pp 3, 12). Data from the Americas were limited to two sites in Mexico, despite Colombia hosting the highest number of internally displaced persons (IDPs) globally (appendix p 5).2Global trends: forced displacement in 2020. United Nations High Commissioner for Refugees (UNHCR), Copenhagen2021https://www.unhcr.org/uk/statistics/unhcrstats/60b638e37/global-trends-forced-displacement-2020.htmlDate accessed: January 26, 2022Google Scholar Most sites were refugee camps (22 [34%] of 65) and rural non-camp sites (22 [34%]), with the remaining sites being urban non-camp sites (14 [22%]) and IDP camps (seven [11%]; appendix p 5). Populations were mostly a mix of refugees, IDPs, and the general population in protracted crises due to conflict. Diabetes data from during crises due to natural disasters, epidemics, and acute emergencies (crisis duration of <6 months) were lacking. This is an important data gap because natural disasters triggered three times more new internal displacements in 2020 than did conflict.6The Internal Displacement Monitoring CentreGlobal Report on Internal Displacement 2021. The Internal Displacement Monitoring Centre, Geneva2021https://www.internal-displacement.org/global-report/grid2021/Date accessed: January 26, 2022Google Scholar Most sites (57 [88%] of 65) provided diabetes services (table; appendix p 6), including the clinical management of diabetes. 31 (48%) sites used Ministry of Health supported guidelines, while 16 (25%) used organisation-specific guidelines. Of 57 sites that offered diabetes services, patient diabetes education was available at 38 (67%) sites, mostly provided by health-care professionals. However, only 21 (37%) of these 57 sites provided diabetes training for health-care workers. Community outreach was not routinely available.TableHumanitarian sites that reported routine diabetes data collectionAll (n=65)IDP camps (n=7)Refugee camps (n=22)Rural non-camps (n=22)Urban non-camps (n=14)Diabetes service provision57 (88%)7 (100%)22 (100%)17 (77%)11 (79%)Diabetes medication provision47/57 (82%)6/7 (86%)21/22 (95%)13/17 (76%)7/11 (64%)Clinical management of diabetes46/57 (81%)5/7 (71%)21/22 (95%)11/17 (65%)9/11 (82%)Diabetes patient education38/57 (67%)5/7 (71%)20/22 (91%)10/17 (59%)3/11 (27%)Referral to diabetes specialist33/57 (58%)6/7 (86%)13/22 (59%)8/17 (47%)6/11 (55%)Community outreach programmes23/57 (40%)6/7 (86%)12/22 (55%)2/17 (12%)3/11 (27%)Training of local staff in diabetes management21/57 (37%)2/7 (29%)10/22 (45%)5/17 (29%)4/11 (36%)Insulin provision43 (66%)1 (14%)21 (95%)12 (55%)9 (64%)Diagnostics availabilityCapillary glucose46 (71%)1 (14%)18 (82%)17 (77%)10 (71%)Urinary dipstick glucose36 (55%)2 (29%)17 (77%)11 (50%)6 (43%)Urinary microalbumin26 (40%)1 (14%)18 (82%)5 (23%)2 (14%)Serum creatinine19 (29%)010 (45%)2 (9%)7 (50%)Serum glucose18 (28%)1 (14%)5 (23%)5 (23%)7 (50%)Home glucose monitoring14 (22%)1 (14%)4 (18%)3 (14%)6 (43%)HbA1c12 (18%)04 (18%)3 (14%)5 (36%)Lipid panel11 (17%)05 (23%)2 (9%)4 (29%)Serum potassium10 (15%)05 (23%)1 (5%)4 (29%)Dilated eye exams3 (5%)01 (5%)02 (14%)Cardiovascular medication availabilityAspirin59 (91%)7 (100%)22 (100%)18 (82%)12 (86%)Angiotensin-converting enzyme inhibitors50 (77%)4 (57%)22 (100%)17 (77%)7 (50%)Statins25 (38%)3 (43%)11 (50%)8 (36%)3 (21%)Angiotensin-receptor blockers17 (26%)09 (41%)4 (18%)4 (29%)Data collectedTotal number of diabetes consultations51 (78%)6 (86%)19 (86%)16 (73%)10 (71%)Number of follow-up diabetes visits33 (51%)4 (57%)19 (86%)5 (23%)5 (36%)Type 1 and type 2 diabetes as separate phenotypes31 (48%)2 (29%)17 (77%)5 (23%)7 (50%)Patients on diabetes medications*Includes oral diabetes medications or insulin, or both.38 (58%)6 (86%)17 (77%)7 (32%)8 (57%)Patients on insulin30 (46%)1 (14%)15 (68%)7 (32%)7 (50%)Admissions for hyperglycaemic crises†Included diabetic ketoacidosis or hyperglycaemic hyperosmolar syndrome.22 (34%)2 (29%)10 (45%)6 (27%)4 (29%)Diabetic foot15 (23%)1 (14%)4 (18%)6 (27%)4 (29%)Diabetic retinopathy8 (12%)1 (14%)4 (18%)2 (9%)1 (7%)Diabetic nephropathy9 (14%)1 (14%)4 (18%)2 (9%)2 (14%)Diabetic neuropathy11 (17%)1 (14%)3 (14%)4 (18%)3 (21%)Diabetes and hypertension21 (32%)1 (14%)10 (45%)4 (18%)6 (43%)Diabetes and cardiovascular disease14 (22%)1 (14%)6 (27%)3 (14%)4 (29%)Data are n (%) or n/N (%), where n is number of sites.* Includes oral diabetes medications or insulin, or both.† Included diabetic ketoacidosis or hyperglycaemic hyperosmolar syndrome. Open table in a new tab Data are n (%) or n/N (%), where n is number of sites. An absence of reliable access to diabetes medications was the most reported barrier to care (appendix p 11). 22 (34%) of 65 sites did not provide insulin (table). While most refugee camps provided insulin procured by the humanitarian organisation, only one (14%) of seven IDP camps provided insulin, which was obtained via patient out-of-pocket cost (appendix p 8). However, six (86%) IDP camps had referral programmes to diabetes specialists, who might have provided insulin (appendix p 6). Nonetheless, IDPs constitute most of the world's forcibly displaced populations and documenting and ensuring available insulin, provided by an humanitarian organisation, local providers, or national health programmes is critical.2Global trends: forced displacement in 2020. United Nations High Commissioner for Refugees (UNHCR), Copenhagen2021https://www.unhcr.org/uk/statistics/unhcrstats/60b638e37/global-trends-forced-displacement-2020.htmlDate accessed: January 26, 2022Google Scholar Aspirin and Angiotensin-converting enzyme inhibitors were the most available cardioprotective medications at all sites; only 25 (38%) sites provided statins (table). Diagnostic testing was the second most reported barrier to care (appendix p 11). Capillary glucose testing, the most basic diagnostic tool for diabetes management, was unavailable at 19 (29%) of sites. HbA1c and home glucose monitoring were rarely available with only 12 sites (18%) having access to HbA1c and 14 (22%) having access to home glucose monitoring (table). Without glucose monitoring, adequate diabetes management is practically impossible. Serum creatinine, potassium, and cholesterol measurements were uncommon, and dilated eye exams were only present at three (5%) of 65 sites. This paucity of available key diagnostic tests highlights the need for low-cost, field-adapted tools for diabetes management and monitoring. 29 (45%) sites screened for gestational diabetes (appendix p 6), although women constitute half the displaced population globally and 28% of maternal deaths are the due to non-obstetric causes, including diabetes.7Say L Chou D Gemmill A et al.Global causes of maternal death: a WHO systematic analysis.Lancet Glob Health. 2014; 2: e323-e333Summary Full Text Full Text PDF PubMed Scopus (2520) Google Scholar However, some humanitarian programmes provide specialised perinatal care, which might not have been captured here. Only two (3%) sites provided a basic package of diabetes care that included diabetes management, medication provision, glucose testing, patient education, workforce training, and continuity of care (appendix p 3). High staff turnover, insufficient knowledge, and absence of standardised guidelines adapted to humanitarian contexts restrict the capacity of health-care workers to provide care. Although most sites collected diabetes data, there was no standardised data collection system across or within organisations (appendix p 10). Most sites used organisation-specific data collection systems, although the type of data collected and method of collection was often inconsistent across sites within an organisation, and 12 (18%) of 65 sites used systems supported by the local Ministries of Health. Most sites collected aggregate data recording the total number of diabetes consultations (new and return visits), making it difficult to assess prevalence, and only 31 (48%) sites distinguished between type 1 and type 2 diabetes (appendix p 10). The number of patients on diabetes medications and with microvascular and microvascular complications and concomitant hypertension were not routinely reported, with 38 (59%) centres reporting numbers of patients on diabetes medication, and 18 (28%) sites reporting microvascular and microvascular complications (appendix p 10). Given that 43% of patients among sites that reported demographics (42 of 65 sites) were minors (ie, younger than 18 years; appendix p 3) and type 1 diabetes is immediately life-threatening without access to insulin and continuity of care, the paucity of data on type 1 diabetes is particularly concerning. Thus, standardised epidemiological tools and methods aligned with larger global efforts are needed to capture the burden of diabetes and its complications for decision-making, pharmaceutical forecasting, and programme evaluation.8WHOWHO Discussion Paper: draft recommendations to strengthen and monitor diabetes responses within national noncommunicable disease programmes, including potential targets. World Health Organization, Geneva2021https://www.who.int/publications/m/item/who-discussion-paper-draft-recommendations-to-strengthen-and-monitor-diabetes-responses-within-national-noncommunicable-disease-programmes-including-potential-targetsDate accessed: January 17, 2022Google Scholar Representative quotes from the qualitative data were illustrative. When asked what three main barriers to diabetes care were, a site in Yemen answered: “1. Poor medical supplies and equipment alongside the weak infrastructure have made our practice very limited (no insulin was available at the site, so patients who needed it were left out), 2. Lack of financial resources have led to limited human resources available to provide medical care, 3. Lack of a systematic approach, like having a health information system, prevented us from providing [non-communicable disease] care as we don't have data collection processes [to] secure continuity of care.” One site in Bangladesh responded: “1. Continuation/timely insulin shot at the household level by the patient, 2. Storage of insulin at household by the patients considering hot and humid temperature, 3. Laboratory investigation at the clinic for monitoring the status of different biochemical markers.” Our study shows insufficient diabetes care delivery in a sample of humanitarian sites. These results likely underestimate how inadequate diabetes care is within these settings, given the over-representation of refugee camps in our sample; in our experience, refugee camps have more comprehensive health care than sites serving IDPs or the general community. Essential diabetes medicines, diagnostics, and trained health-care providers must be standard in any humanitarian response and integrated into routine care. Given the protracted nature of most crises, these data highlight the importance of expanding universal health coverage to populations affected by crises and strengthening the humanitarian-development nexus to support the most vulnerable populations and the health-care systems they rely on. SKe is chair of the board of the International Alliance for Diabetes Action and is on the Scientific Advisory Board of the Medicines Patent Pool and Diabetes Education for All (all unpaid). OM received a summer research award from Mitacs to support his effort in this work. JBM is an Academic Associate for Quest Diagnostics R&D. All other authors declare no competing interests. Download .pdf (.25 MB) Help with pdf files Supplementary appendix Diabetes in humanitarian crises: the Boston DeclarationNearly three out of every four deaths worldwide in 2017 were caused by non-communicable diseases (NCDs).1 Many countries have made progress reducing risk factors for NCDs such as tobacco use, hyperlipidaemia, and hypertension, but no countries have successfully reversed the increasing trends in diabetes prevalence and mortality from diabetes.1 This situation represents a massive global health failure, since type 2 diabetes is largely preventable with lifestyle modification and cost-effective treatments exist for both type 2 and type 1 diabetes. Full-Text PDF