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University of Groningen

Distress and health-related quality of life in Indonesian type 2 diabetes mellitus outpatients

Arifin, Bustanul

IMPORTANT NOTE: You are advised to consult the publisher's version (publisher's PDF) if you wish to cite from it. Please check the document version below.

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Publication date: 2018

Link to publication in University of Groningen/UMCG research database

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Arifin, B. (2018). Distress and health-related quality of life in Indonesian type 2 diabetes mellitus outpatients. University of Groningen.

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Summary 119 EQ-5D instrument consists of two

chap-ters: first, we performed a comparison study between EQ-5D 3 level (3 L) and 5 level (5L) versions (Chapter 5). Secondly, we con-ducted a study of EQ-5D utility values in Indonesian T2DM outpatients (Chapter 6).

Chapter 2 concerns the performing of a translation, revision and a validation study of the DDS questionnaire for Indonesian T2DM outpatients with various types of complications. The final result of this study is a DD measurement tool for T2DM out-patients which we labeled “DDS17 Bahasa Indonesia”. Furthermore, still related to DD, to have a deeper understanding of DD in Indonesian T2DM outpatients, we per-formed a qualitative study (Chapter 3). This qualitative study used the 17 questions from the DDS17 Bahasa Indonesia. Participants involved in this qualitative study were di-vided into two groups; i.e., groups concern-ing focus group discussions and in-depth interviews. The result of this qualitative study provides a description that spiritual-ity, positive attitude, and acceptance are the most commonly used coping mechanism by the participants. Besides, this study recom-mends that housewives living with T2DM are a community group that needs special attention. Then, there is a DD modelling study (Chapter 4), in which we compared the level of DD for the participants treated in primary care to those who are treated in secondary care. For this study we developed five models. All five models provide the re-sult that the level of DD in participants treated in primary care is higher than in those participants treated in secondary care. This requires furthere investigation, also as

the time of data collecting was 2014. At that time, Indonesia had just started the new health care system in which all the T2DM services must be executed in primary care.

In the EQ-5D instrument study, we found that EQ-5D 5L achieves better than

SUMMARY

Type 2 diabetes mellitus (T2DM) has be-come a worldwide phenomenon that needs special attention, not only because of the in-creasing number of patients but also because of the widened age range of T2DM patients. In the past, T2DM was only found among the elderly, but today T2DM is also found in the younger generation. In the 34 prov-inces of Indonesia, based on the report by the Ministry of Health of Republic of Indo-nesia, prevalence of T2DM grows in almost every province. The increasing numbers of T2DM patients need to be anticipated and needs to involve all healthcare sectors. Start-ing 1 January 2014, the government of In-donesia has planned a universal health cov-erage and targeted that, in the year 2019, all Indonesian communities will be covered by health insurance.

Health insurance in Indonesia is man-aged by BPJS/Badan Penyelenggara Jam-inan Sosial (social security administrative agency). Related to T2DM, BPJS has one program known as Prolanis that concenrs the chronic diseases management program. This program aims to optimise health costs, as well as to improve the health-related quality of life (HRQoL) for the T2DM pa-tients. In Indonesia, research on HRQoL is urgently needed to provide adequate in-sights into the psychological conditions of the T2DM patients as well as to provide utility values that can be used in pharma-coeconomic/health economic studies.

Overall, in this thesis, we used two types of HRQoL measurement tools, the diabe-tes distress scale (DDS) and the EuroQoL five-Dimensional (EQ-5D instrument). We divided the diabetes distress (DD) studies into three chapters: translations, revisions, and validations (Chapter 2), a qualitative study (Chapter 3) and a modelling study (chapter 4). Furthermore, the study with the

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120 CHAPTER 7 | Summary

for T2DM patients, but also for the fam-ily members, because they are the ones who know most about the health conditions of the T2DM patients.

3L in terms of scoring and ceiling, redistri-bution from 3L to 5L, discriminative power, and test-retest reliability. Notably, the result of this study recommends that during the whole process of data collecting it is better to have a professional, for example, visiting the patients, especially to help the elderly and the group participants with a lower ed-ucation level to understand the questions (Chapter 5). Furthermore, in the EQ-5D utility study, one of our final results was a reference set of EQ-5D utility values which is very useful for pharmacoeconomic anal-ysis (cost-utility analanal-ysis and modelling for health economic evaluation). Moreover, an-other important finding concerned factors influencing the EQ-5D utility in Indone-sian T2DM outpatients. Notably, the fol-lowing are some socio-economic factors that can negatively influence the EQ-5D utility value in Indonesian T2DM outpatients: be-ing treated in secondary care, havbe-ing a lower level of education, not currently undergoing T2DM therapy, and being a housewife. It

should be highlighted that the participants that were accompanied by a caregiver during their visit to a health facility reported that their EQ-5D utility was more decreased. This was logical because participants who required a caregiver were those with worse clinical conditions compared to those who were still able to come alone (Chapter 6).

In conclusion, our study emphasizes that T2DM outpatients do not only need atten-tion on getting the adequate medicines. The Indonesian T2DM outpatients also need at-tention to psychological aspects, like knowl-edge of T2DM and the changing system of services for T2DM outpatients, such as the changing context of health insurance in In-donesia. Our study also recommends special care to lower educated T2DM outpatients and housewives with T2DM, like special programs assigned to these two groups. Knowledge of T2DM is not just necessary

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