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Diabetes and endocrinology
Research
What is important for you? A qualitative interview study of living with diabetes and experiences of diabetes care to establish a basis for a tailored Patient-Reported Outcome Measure for the Swedish National Diabetes Register
  1. Maria Svedbo Engström1,2,
  2. Janeth Leksell2,3,
  3. Unn-Britt Johansson4,5,
  4. Soffia Gudbjörnsdottir1,6
  1. 1University of Gothenburg, Sahlgrenska Academy, Institute of Medicine, Gothenburg, Sweden
  2. 2Dalarna University, School of Education, Health and Social Studies, Falun, Sweden
  3. 3Uppsala University, Department of Medical Sciences, Uppsala, Sweden
  4. 4Sophiahemmet University, Stockholm, Sweden
  5. 5Karolinska Intitutet, Department of Clinical Sciences and Education, Stockholm, Sweden
  6. 6Register Center Västra Götaland, Gothenburg, Sweden
  1. Correspondence to Maria Svedbo Engström; msd{at}du.se

Abstract

Objectives There is a growing emphasis on the perspective of individuals living with diabetes and the need for a more person-centred diabetes care. At present, the Swedish National Diabetes Register (NDR) lacks patient-reported outcome measures (PROMs) based on the perspective of the patient. As a basis for a new PROM, the aim of this study was to describe important aspects in life for adult individuals with diabetes.

Design Semistructured qualitative interviews analysed using content analysis.

Setting Hospital-based outpatient clinics and primary healthcare clinics in Sweden.

Participants 29 adults with type 1 diabetes mellitus (DM) (n=15) and type 2 DM (n=14). Inclusion criteria: Swedish adults (≥18 years) living with type 1 DM or type 2 DM (duration ≥5 years) able to describe their situation in Swedish. Purposive sampling generated heterogeneous characteristics.

Results To live a good life with diabetes is demanding for the individual, but experienced barriers can be eased by support from others in the personal sphere, and by professional support from diabetes care. Diabetes care was a crucial resource to nurture the individual's ability and knowledge to manage diabetes, and to facilitate life with diabetes by supplying support, guidance, medical treatment and technical devices tailored to individual needs. The analysis resulted in the overarching theme ‘To live a good life with diabetes’ constituting the two main categories ‘How I feel and how things are going with my diabetes’ and ‘Support from diabetes care in managing diabetes’ including five different categories.

Conclusions Common aspects were identified including the experience of living with diabetes and support from diabetes care. These will be used to establish a basis for a tailored PROM for the NDR.

  • QUALITATIVE RESEARCH

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

https://doi.org/10.1136/bmjopen-2015-010249

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