Exploring patients experience of living with diabetes in Ecuador: preliminary results of focus groups.

Problem

Diabetes is considered a global health problem. In Ecuador it is the second cause of death, only after ischemic heart disease and is the first of the chronic diseases. Driven by obesity, unhealthy lifestyles and increased life expectancy, diabetes carries a high disease burden, due to its prevalence, complications and the multimorbidity associated with this pathology that surpasses primary care efforts. In Ecuador, a specific Clinical Practice Guideline is applied for this pathology, but it does not address patient participation. The objective of this study was to explore the experience of “living with diabetes” of the users of the national health system of Ecuador with the intention of developing the first PROM tool for the Ecuadorian environment.

Approach

a qualitative research that included four focus groups and six semi-structured interviews with adults with type 2 diabetes treated in primary care. A purposive sampling strategy was used to recruit individuals who might be interested in discussing their life experience. All participants voluntarily agreed to participate and signed an informed consent, all sessions were recorded in audio and subsequently transcribed. In order to obtain culture, beliefs, demographic, diet, type of treatment and degree of engagement, participants from the highlands, coastal, indigenous population and urban or rural areas were included. The information was analyzed based on the following mutually exclusive categories: personal, social and occupational dimensions of the disease. Information capture was continued until data saturation was reached in all cases.

Findings

42 patients, 10 men and 32 women between 30 and 75 years old participated. Of these, 19 participants belonged to rural areas and 23 participants to urban areas. Among the most prevalent symptoms, thirst was described as a persistent cause of discomfort, with fatigue added. The limited time per patient was indicated as an area for improvement, together with health education. A proportion of the participants accepted their pathology but not the treatment, this is motivated by a high prevalence of alternative treatments, the lack of information, the low level of health literacy and the "fear" of insulin therapy. Therapeutic goals agreed with the patients were not set. Among the main fears are the long-term complications (diabetic nephropathy and retinopathy) since this would detract from the autonomy they maintain and limit them from leading a "normal life".

Consequences

Developing these tools respond to the objectives of achieving patient-centered care and, therefore, add value to health care by expanding the indicators that monitor the quality of assistance provided. This type of procedure allows patients to be involved in the care process, thus establishing a framework to achieve better clinical results and greater patient satisfaction with the system.