Indicators for adequate diabetes care for the indigenous communities of Ecuador

Abstract Introduction Diabetes is the second leading cause of death in Ecuador, as 79% of the indigenous population live in rural areas that are difficult to access and have below‐average health resources. The objective of this study was to define person‐centred indicators to monitor the care received by patients with diabetes in the indigenous population. Method Qualitative research combining three focus groups (with the participation of 10 patients and 18 professionals) to capture relevant information and Delphi to reach a consensus on the pertinence, relevance, and feasibility of a set of indicators was conducted. Two rounds of the Delphi technique were performed, with the participation of 64 professionals in the first round (90% response rate) and 34 in the second round (53% response rate). Results A total of 23 indicators were identified which were distributed in the previously identified six dimensions (cosmovision, accessibility, adaptability to cosmovision, resources, equipment, community care, quality culture and results). Conclusions The consensus on the set of indicators among all the participants in this study strengthened the results obtained. These indicators have considered the feasibility and relevance and aimed to achieve comprehensive person‐centred care for diabetes among the indigenous population in Ecuador and possibly the Andean community. Patient or Public Contribution These indicators’ development included patients and caregivers since its conception. During the qualitative phase of this research, relevant information on cultural and social beliefs was gathered directly from the study population to achieve patient‐centred indicators for adequate diabetes care.


| INTRODUCTION
Non-communicable diseases are a challenge for all health systems and are a global health problem. They are the leading causes of illness and preventable premature deaths in the Americas and Ecuador.
These pathologies undermine individual and family well-being and threaten socioeconomic development because of the burden associated with them due to the marked increase in treatment costs. 1 Mitigating, preventing, and reducing mortality from cardiovascular diseases and diabetes are part of the 2030 Sustainable Development Goals. 2 The global prevalence of diabetes in adults (20-79 years) is estimated to be 9.3% (463 million people) in 2019, which is estimated to increase to 10.2% (578 million) by 2030. 3 In addition, the prevalence in South and Central American countries is expected to increase by 27% between 2019 and 2030. 3,4 The economic cost of diabetes is estimated to be USD 65,216 million per year in Latin America and the Caribbean. 5 In Ecuador, the prevalence of diabetes is 7.3%, 6,7 and it is the second leading cause of death, only after ischaemic heart disease, for which diabetes is a well-known risk factor. 8 Clinical practice guidelines specific to diabetes 9 include clinical and analytical parameters for the control of the disease. Although this guideline is applied throughout Ecuador, it does not include indicators to monitor the care provided. In Ecuador, 7% of the population is indigenous, and 79% live in rural areas that are difficult to access. 10 Due to the socioeconomic and cultural differences in this group of indigenous people, the prevalence of diabetes is disproportionately higher.
According to the latest National Health and Nutrition Survey of Ecuador, the indigenous community is the least active among Ecuador's five predominant ethnic groups. Less than 3% perform some physical activity for at least 60 min a day, and 57% are overweight or obese. 11 Likewise, 73% of this minority population does not have access to social security, and their health resources are below the national average. 12 The indigenous population typically holds beliefs or has customs and lifestyles that are markedly different. In Ecuador, indigenous cosmovision interprets life in plenitude or well-being as a harmonious realization between man and nature. 13 This belief differs from the scientific perspective on the causes and approaches to diabetes and other chronic pathologies. Moreover, low-income sources of this population negatively impact diet and accessibility to health facilities. Therefore, it is necessary to establish a dashboard to measure the quality of care received by this population. Thus, this study aimed to define indicators from the perspective of person-centred care to monitor the care received by patients with diabetes in the indigenous people.

| Study population
The indigenous nationalities and people of Ecuador are collectivities that assume an ethnic identity based on their culture, institutions, and history that define them as the indigenous peoples and descendants of pre-Hispanic societies. The Republic of Ecuador recognizes indigenous peoples and nationalities by defining itself as intercultural and plurinational in its political constitution. According to the last national census conducted in 2010, 1,018,176 people identified themselves as indigenous.
The Ecuadorian territory comprises 24 provinces and nine administrative zones. These zones must coordinate technical and organizational activities for the optimal functioning of state ministries. This study included participants from rural areas of Zone 3 (Central Andes and Pastaza).

| Inclusion criteria
The inclusion criteria for the patients were those who used the Ministry of Public Health for at least a year; belonged to any sex, were over 18 years of age, were diagnosed with type 2 diabetes, without a history of ischaemic heart disease or stroke, and able to understand and speak Spanish. The professionals' group included medical doctors (with at least 6 years of training), family doctors (with an additional 4-year specialist training), nurses (with at least 5 years of training), primary care technicians (with at least 2 years of training), officials of the district directorates or zonal coordinating offices involved, and national directors of the Quality Directorate of the Ministry of Public Health. All of them had at least 5 years of experience in the public sector and worked in rural areas of Zone 3. Face-to-face interviews were conducted with the patients. A purposive sampling strategy 14 was used to recruit individuals with type 2 diabetes who were interested in discussing their experiences.

| Focus groups
Participants were contacted through phone calls made by professionals at the health centres they usually attended. On arrival, the aim of the focus groups was explained, and the patients decided if they wished to participate. The focus group was performed in a private room in the same health centre attended by participants to provide a familiar environment to generate trust. Informed consent was obtained before the focus group, and permission for audio recording was also obtained. The participants' anonymity and data confidentiality were respected. They were also informed that they had the right to leave the focus group at any time without giving a reason.
None of the participants declined the invitation to participate in the focus groups or interviews.

| Qualitative analysis
The focus group was audiotaped and transcribed verbatim. We applied Braun and Clarke's 15 thematic analysis, which comprises the following steps: (1) familiarizing oneself with the data, (2) generating initial codes, (3) searching for themes, (4) reviewing themes, (5) defining and naming themes, and (6) producing the report. After familiarizing themselves with the information obtained from all groups, two authors independently elaborated the categories of analysis to codify the ideas contributed by each group in an orderly manner. In the case of inconsistencies in coding, a third researcher intervened to facilitate consensus. The codes were then reviewed and revised by a third author. The authors then analysed the consistency (repetitions) of the ideas contributed by patients, professionals, and managers in each category. Discussions were held to ensure the appropriate triangulation of ideas between patients, professionals, and managers, which led to identifying quality criteria and essential attributes. Finally, these criteria were ordered according to the classification proposed by Donabedian 16 of structure, process, and results, giving rise to 'questionnaire 0' used in the Delphi technique.

| Delphi study
The Delphi technique seeks the opinions of a group of experts to assess the extent of agreement and resolve disagreements. 17 This technique was used to identify the quality criteria that, in the opinion of clinicians and managers, would make it possible to monitor the results of healthcare interventions in the study population. The relevance, importance, and feasibility criteria were evaluated on a Likert scale ranging from 0 (not at all important or not feasible) to 10 (very important or feasible). The Delphi technique was performed using an online platform designed for this study. This web-based software allowed the generation of personal links for each participant. Only healthcare professionals were included in the Delphi study.
The Delphi process comprised two voting rounds, conducted 45 days apart. Following the focus groups and qualitative analysis, Indicators that scored ≥5 were included in the final proposal (high consensus for inclusion).

| Consensus conference
Following the Delphi study, the research team, two experts in quality and patient safety, middle management, health professionals, and managers of a health district providing direct care to the indigenous population analysed the study results. It generated a proposal for indicators after considering their relevance, usefulness, and feasibility.

| RESULTS
The qualitative analysis of the focus group discussions identified six milestones in diabetes care (Figure 1), and factors that conditioned the care were classified into six dimensions (Table 1). This analysis allowed the identification of criteria for adequate care for each milestone along the pathway.  Lack of confidence in the health system.
Lack of access to information about the disease and healthy diet.
Provide more health education by trained health centre staff (Primary Care Technicians).
Difficult access to healthcare resources.
'According to me, I am fine, but according to the doctors, I am not fine', but it does not hurts me.
Lack of acceptance of the disease (awareness of being sick).
It was challenging to have to make two different meals in our house.
Socioeconomic difficulties of patients that compromise healthy eating.
Diabetic eating style.
Late diagnosis in hospitals (with the appearance of complications).
Access in hospitals. The necessary information is not available.
Sometimes it is difficult to get to the health centre.
Difficulties in transporting patients. Geographic areas of difficult access.
Accessibility and adaptability to the cosmovision Lack of health promotion and disease prevention measures.
Lack of protocols adapted to intercultural practices.
Laboratory tests appointments are available only one day a week, and sometimes they are not.
Lack of flexibility in the management of laboratory and medical appointments.
Limited access to consultation and laboratory services.
Health centres must have at least one member who speaks the native language.
When I ran out of money, I stopped going to the doctor.
Social and economic vulnerability of the communities.
Economic Vulnerability.

Equipment and resources
Lack of specialists (multidisciplinary team) Lack of resolution capacity of various services in health facilities.
Delays in patient follow-up after the onset of complications (psychology and physical therapy). Support from psychology, especially for the accompaniment of patients in a situation of abandonment, elderly and/or vulnerable adults.

Failures in specialist support to general practitioners in remote areas
Strengthen the follow-up of consultations by specialists complementary to the process.
Sometimes we never get the lab results.
Absence or lack of medication. Increased access to diagnostic tests.

Scarce laboratory tests.
'When I arrived at the health centre, they told me, 'diabetics aside', that affected me the most'.
Failures in communication between hospitals and health centres and the different health services.
Ethnic discrimination. Complex therapeutic compliance on the part of the indigenous population (due to various factors).

Results
Include diagnostic criteria for prediabetes to carry out prevention processes.
To create a scorecard with established quality standards.
Measure health education outcomes.

| DISCUSSION
To the best of our knowledge, this is the first study to include indigenous populations' perspectives on diabetes control in Ecuador.
The agreed set of indicators consisted of the usual indicators in evaluating outcomes that can be found in clinical guidelines (e.g., the proportion of patients in the therapeutic range in the last 90 days).
Nevertheless, other indicators focused on how health education is approached, patient activation in self-care, and the organization of the care process, emphasizing the cosmovision of the disease and the reality of the socioeconomic situation of the indigenous population that conditions their access to a healthy diet or health.
As pointed out by previous authors, the focus should be on building a therapeutic relationship with indigenous people with diabetes rather than a singular emphasis on achieving management targets. 18 As commented by the participants of this study, there was a lack of confidence in indigenous populations in the healthcare system, which seems to systematically affect other contexts. 19 The current poor success in achieving management targets highlights the limitations of health services that are not relevant to indigenous populations' social and cultural context.
This study also confirmed that the perspectives of patients and professionals did not coincide entirely. Furthermore, it highlighted the need for healthcare workers to make additional efforts to adjust to the needs and expectations of patients and their families. This aspect is crucial to achieving the objectives of Ecuador's care process, which includes person-centred care in the terms proposed by the WHO. 20,21 This set of indicators identified in our study helps shift the focus of outcome assessment in diabetes treatment from the pathology to