Asiakasnäkökulma hoidon laadun kehittämiseen Potilaat mukaan arvioimiaan hoidon ja palvelun laatua Pirjo Ilanne-Parikka 3.10.2016
Pirjo Ilanne-Parikka LT, sisätautien el, diabeteslääkäri Sidonnaisuudet: Päätoimi: Ylilääkäri, Suomen Diabetesliitto ry / Kuntoutus, koulutus ja asiantuntijapalvelut Osana omaa toimea yhteistyötä, mm. koulutusten suunittelua ja toteutusta eri järjestöjen, yhdistysten ja liikeyritysten kanssa Sivutoimet: Vastaanottotoiminta Tampereen Diabetesyhdistys ry Kustannus Oy Duodecim: Diabetes kirjan päätoimittaja Kirjoittaja: Diabetes, Lääkärin Käsikirja, Lihavuus
Terveyshyötymalli Arjessa pärjääminen
DAWN2 : A global 360 perspective on diabetes 17 countries 15,438 respondents 8,596 people with diabetes 2,057 family members 4,785 diabetes care professionals Patient organisations and policy makers International Diabetes Federation (IDF) Steno Diabetes Center International Alliance of Patient Organizations (IAPO) DAWN2 Study 2013 Novo Nordisk A/S. All rights reserved
Living with and managing diabetes is distressing for people with diabetes Nicolucci A, et al. Diabet Med 2013;30:767 77 DAWN2 Study 2013 Novo Nordisk A/S. All rights reserved
Diabetes has a wide-ranging impact on the lives of people with diabetes People with diabetes reported a negative impact on the following aspects of living Nicolucci A, et al. Diabet Med 2013;30:767 77 DAWN2 Study 2013 Novo Nordisk A/S. All rights reserved
Diabetes impacts family members, resulting in substantial burden, worry and distress Kovacs Burns K, et al. Diabet Med 2013;30:778 88 DAWN2 Study 2013 Novo Nordisk A/S. All rights reserved
Diabetes has a wide-ranging impact on the lives of family members Family members of people with diabetes report a negative impact on aspects of living Kovacs Burns K, et al. Diabet Med 2013;30:778 88 DAWN2 Study 2013 Novo Nordisk A/S. All rights reserved
Diabeetikon hyvän hoidon laatukriteerit Dehko 2002
Laatukriteerien asiakasnäkökulma
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WHOQOL-BREF Maailman terveysjärjestön elämänlaatumittarin lyhyt versio www.toimia.fi 26 kysymystä 2 yleistä kysymystä elämänlaadusta ja terveydentilasta Muista 4 ulottuvuutta: fyysinen psyykkinen, sosiaalinen ja elinympäristö 13 3.10.2016
Lyhennetty PAID-5 Problem Areas in Diabetes scale Which of the following diabetes issues are currently a problem for you? Feeling scared when you think about living with diabetes Feeling depressed when you think about living with diabetes Worrying about the future and the possibility of serious complications Feeling that diabetes is taking up too much of your mental and physical energy every day Coping with complications of diabetes Scale Scoring Serious problem 4 Range 0 100 Somewhat serious problem 3 Low distress 0 39 Moderate problem 2 High distress 40 100 Minor problem 1 No problem 0
Problem Areas in Diabetes scale (PAID-5) modified for family members Which of the following diabetes issues are currently a problem for you? Feeling scared when you think about the fact the person you live with has diabetes Feeling depressed when you think about the fact the person you live with has diabetes Worrying about the future and the possibility that the person you live with will get serious complications Feeling overwhelmed by having to help the person you live with manage his/her diabetes Feeling guilty or anxious about not helping the person you live with enough with his/her diabetes management Scale Scoring Serious problem 4 Range 0 100 Somewhat serious problem 3 Low distress 0 39 Moderate problem 2 High distress 40 100 Minor problem 1 No problem 0
Diabetes Distress Scale Polonsky 16 3.10.2016
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EASD 2016: PROMs Results: 1373 individuals completed the SF-36 questionnaire (response rate 55%). Responders were 50% male, mean age 49 years, diabetes duration 25 years, HbA1c 61.7±12.7 mmol/mol, 48% on lipidlowering medication, 10% smokers, 66% had retinopathy and 26% on insulin pump therapy. This nation-wide study of individuals with T1D shows that poor glycaemic control is associated with lower health-related quality of life with lower scores of both physical and mental health and with the lowest scores for the general health and vitality dimensions. NDR is validating a new instrument which may facilitate further investigation of these findings. 19 3.10.2016
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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. 22 3.10.2016
Observational, cross-sectional study including 1,012 T2DM patients and 974 physicians from 47 and 52 Spanish provinces An electronic structured self-administered questionnaire containing 17 questions was designed aiming to address both physicians and patient s perceptions on overall T2DM health status and patient-reported outcomes. 23 Patient Preference and Adherence 2015:9 1413 1422 3.10.2016
Diabetes PREMs ja PROMs PROMs Patient Reported Outcome Measures PREMs Patient Reported Experience Measures 24
Kiitos! Pirjo Ilanne-Parikka www.diabetes.fi pirjo.ilanne-parikka@diabetes.fi Tervetuloa kursseille +358 400 723 651 vauvasta vaariin! 25 3.10.2016