kehittämiseen Asiakasnäkökulma hoidon laadun

(1)

3.10.2016

Asiakasnäkökulma hoidon laadun

kehittämiseen

Potilaat mukaan

arvioimiaan hoidon ja palvelun laatua

Pirjo Ilanne-Parikka

(2)

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

(3)

Terveyshyötymalli

Arjessa

pärjääminen

(4)

17 countries

International Diabetes Federation (IDF)

Steno Diabetes

Center

International Alliance of Patient

Organizations (IAPO)

DAWN2™: A global 360° perspective on diabetes

15,438 respondents

8,596 people with diabetes 2,057 family members

4,785 diabetes care professionals

Patient organisations and policy makers

Changing_Diabetes_2013_DAWN2_train_the_trainer_slide_deck, APROM ID 5583, October 2013

(5)

Nicolucci A, et al. Diabet Med 2013;30:767–77

Living with and managing diabetes is distressing for people with diabetes

(6)

Nicolucci A, et al. Diabet Med 2013;30:767–77

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

(7)

Kovacs Burns K, et al. Diabet Med 2013;30:778–88

Diabetes impacts family members, resulting in substantial burden, worry and distress

(8)

Kovacs Burns K, et al. Diabet Med 2013;30:778–88

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

(9)

Diabeetikon hyvän hoidon

laatukriteerit Dehko 2002

(10)

Laatukriteerien asiakasnäkökulma

(11)

3.10.2016 11

(12)

(13)

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

3.10.2016 13

(14)

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

(15)

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

(16)

3.10.2016 16

Diabetes Distress Scale

Polonsky

(17)

3.10.2016 17

(18)

3.10.2016 18

(19)

EASD 2016: PROMs

3.10.2016 19

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 lipid-

lowering 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.

(20)

3.10.2016 20

(21)

3.10.2016 21

(22)

• 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

• ‘How I feel and how things are going with my diabetes’

and

• ‘Support from diabetes care in managing diabetes’

including five different categories.

3.10.2016 22

(23)

3.10.2016 23

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.

Patient Preference and Adherence 2015:9 1413–1422

(24)

Diabetes PREMs ja PROMs

PROMs Patient Reported Outcome Measures PREMs Patient Reported Experience Measures

24

(25)

Kiitos!

Pirjo Ilanne-Parikka www.diabetes.fi

pirjo.ilanne-parikka@diabetes.fi Tervetuloa kursseille – +358 400 723 651 vauvasta vaariin !

3.10.2016 25