Gezondheidsgeletterdheid, patiënteneducatie en zelfmanagement: een heilige drievuldigheid

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1 Gezondheidsgeletterdheid, patiënteneducatie en zelfmanagement: een heilige drievuldigheid Prof. Dr. Fabienne Dobbels Ziekenhuis- en Verplegingswetenschap (KU Leuven)

2 An (un)exceptional case? Nielsen-Bohlman et al. Health Literacy: a prescription to end confusion

3 The health decision-making paradox - People are challenged to make healthy lifestyle choices - Emphasis on self-managing their personal and family journeys - Through complex environments and healthcare systems Health decisionmaking paradox Health literacy crisis - People are not prepared or supported well in these tasks: - Health care systems are increasingly difficult to navigate - Education systems fail to provide people with adequate skills to interpret information to improve their health (http://www.euro.who.int/ data/assets/pdf_file/0008/190655/e96854.pdf)

4 Overview of presentation 1 2 What do we mean by low health literacy? What is the association between health literacy, self-management and clinical outcomes? 3 How to deal with low health literacy?

5 Overview of presentation 1 2 What do we mean by low health literacy? What is the association between health literacy, self-management and clinical outcomes? 3 How to deal with low health literacy?

6 Competencies A comprehensive conceptual definition of health literacy Health literacy is linked to literacy and entails people s knowledge, motivation and competences to access, understand, appraise, and apply health information in order to make judgments and take decisions in everyday life concerning healthcare, disease prevention and health promotion to maintain or improve quality of life during the life course Access ability to seek, find and obtain health information Understand ability to comprehend the information accessed Appraise Apply ability to interpret, filter, judge and evaluate this info ability to communicate and use information to make a decision to maintain or improve health (Sørensen et al. BMC Public Health 2012, 12:80)

7 Health literacy across 8 European countries 47% data/assets/pdf_file/0008/190655/e96854.pdf

8 Overview of presentation 1 2 What do we mean by low health literacy? What is the association between health literacy, self-management and poor outcomes? 3 How to deal with low health literacy?

9 Underlying causes of chronic illness 33% overweight and 14% obese 26% sedentary and 58% limited physical activity 25% smoking Preventing Chronic Diseases: a vital investment. Geneva, World Health Organization,

10 Poor health behaviors as main risk factors of burden of chronic disease 2010 Estimated deaths and disability-adjusted life years attributable to the independent effects of 67 risk factors DALY= sum of years lived with disability and years of life lost (Lim et al. Lancet 2012; 380: )

11 Treatment after chronic disease onset: A complex therapeutic regimen Chronic illness management Chronic illness management Medication Healthy lifestyle Treatment of multimorbidity Success will depend very much on the patient s ability to manage their chronic illness adequately in daily life

12 Most of the care of patients takes place outside a hospital environment 1-20% 3 o 2 o 1 o Providing professional patient care 80-99% Self-management support Per Ake Zillen (kidney transplant patient, Sweden): there are 8760 hours in a year; I spent 5 hours within the Health care system. The other 8755 hours are my responsibility

13 % of nurses being (very) confident Proportion of nurses being confident that patients are able to care for themselves after discharge All PL GR BE NO ES IE FI NL CH UK DE SE The objective of RN4cast: to determine how hospital nurse staffing, skill mix, educational composition, and quality of the nurse work environment impact hospital mortality, failure to rescue, quality of care, and patient satisfaction

14 Patients struggle to follow the complex treatment regimen after chronic disease onset behavior Number of studies Prevalence of nonadherence Medication taking % Screening % Physical activity % Health behavior % Appointment keeping % Diet % (DiMatteo MR. Med Care 2004; 42: )

15 Risk difference Risk difference for poor outcome between nonadherent and adherent patients OVERALL 1 0,8 0,6 0,4 0,2 0-0,2-0,4-0,6-0,8-1 Risk difference(%) OR (95% CI) Overall 0.26 [0.20; 0.32] 2.88 [2.23; 3.73] Adult patients 0.23 [0.15; 0.29] - Pediatric patients 0.33 [0.24; 0.49] - (DiMatteo et al. Med Care 2002; 40: 794)

16 Understanding the relationship between poor health literacy, self-management and outcomes (Berkman et al. Evidence report / technology assessment No 199)

17 Overview of presentation 1 2 What do we mean by low health literacy? What is the association between health literacy, self-management and clinical outcomes? 3 How to deal with low health literacy?

18 Low health literacy: an (in)visible problem Present in all walks of life or socio-economic groups Not possible to recognize based on appearance or speech 80% describe themselves as being able to read well Shame and embarrassment: attempts to hide reading problems I will read it when I get home I forgot my glasses Formal assessment is indicated that goes beyond Simple can you read and write questions

19 Newest vital signs to measure ability to understand language and numbers in health context Examples of the 7 questions How many calories (kcal) will you eat if you eat the whole container? If you are advised to eat no more than 60 grams of carbohydrate for dessert, what is the maximum amoung of ice cream you could have? Other widely used tests TOFHLA: time consuming 10 min. for short version 22 min. for full version REALM: short (3 minutes); does not measure word comprehension/numeracy GENERAL LITERACY TESTS not recommended (Rowlands et al. BMC Public Health 2013; 13: 116)

20 Self-management support: much more than patient education SELF-MANAGEMENT= actions patients can perform for themselves to follow their prescribed therapy, avoid health deterioration and to preserve function From knowing Why and what to do TOWARDS how to do it Lorig et al. Ann Behav Med 2003; 26: 3

21 Patient education: the basic principles Getting started: Find out how your patient likes to learn Focus on what your patient needs to know, not on what s nice to know Respect their limits / Give the right amount of information Basics to be covered in any type of patient education: What your patient needs to do and why When your patient can expect results (if applicable) Warning signs (if any) your patient should watch for What your patient should do if a problem occurs Who your patient should contact for questions or concerns (http://www.nlm.nih.gov/medlineplus/ency/patientinstructions/ htm) (http://www.euro.who.int/ data/assets/pdf_file/0008/190655/e96854.pdf)

22 Example of the universal medication schedule Do not say: take 2 tablets by mouth twice daily, but... (http://www.euro.who.int/ data/assets/pdf_file/0008/190655/e96854.pdf)

23 Audit of leaflets on treatment modalities for kidney disease in UK Score Flesch readability score % of leaflets (N= 31) Extremely difficult (e.g. New England J Med) Very difficult (e.g. JAMA) Difficult (e.g. Life insurance policy) Fairly difficult (e.g. Time magazine) Standard (e.g. Reader s digest) 6% 13% 52% 19% 10% Most materials are written at high school or university level, while they should be written on a 5th or 6th-grade reading level (Winterbottom et al. Nephrol Dial Transplant 2007; 22: )

24 Check the readability level of all your educational materials! The Flesch readability test total words 206,835 1,015-84,6 total sentences total syllables total words Lower score = more difficult If score is < 60: rewrite materials online readibility calculator: (http://en.wikipedia.org/wiki/flesch-kincaid_readability_test)

25 An example: from Emilien Lauwelier (23/6) Graag zet ik nog even de afspraken op mail die we gemaakt hebben ivm de studienamiddag op donderdag 11 september 2014 (Provinciehuis Leuven). Zoals aangegeven zullen er 30min voorzien worden per lezing: 20 minuten presentatie, Flesch-Kincaid 10 minuten vragen. Grade We level: hebben 12,3 u als eerste ingepland, na de aankondiging, Flesch-Kincaid te starten vanaf Reading 13u00. Ease Gezien score: we de 40,6 deelnemers aan de studienamiddag willen voorzien met slides van de lezingen, vragen we u vriendelijk om de presentatie op voorhand te voorzien. We hadden afgesproken dat u de presentatie tegen 1 september 2014 naar me zou doormailen. Indien iets u zou verhinderen deze deadline te halen, laat u dit gerust weten, dan bekijken we samen wat wel mogelijk is. We zullen de slides dan ook in PDF formaat via onze website ter beschikking stellen aan de deelnemers. Graag vat ik ons gesprek nog even samen. Uw lezing vindt plaats op donderdag 11 september Flesch-Kincaid om 13u het Provinciehuis Grade level: in Leuven. 6.9 U krijgt 20 minuten. Nadien is er 10 minuten Flesch-Kincaid voorzien voor Reading vragen. We Ease willen score: graag 61.4 copies aan alle deelnemers geven. Nadien worden de slides ook op onze website geplaatst. Kan u ons daarom uw slides bezorgen tegen 1 september?

26 Health literacy interventions build upon relationships and are context-specific data/assets/pdf_file/0008/190655/e96854.pdf

27 The foundations of a health-literacy organization (http://www.euro.who.int/ data/assets/pdf_file/0008/190655/e96854.pdf)

28 A toolbox for healthcare facilities (http://www.euro.who.int/ data/assets/pdf_file/0008/190655/e96854.pdf)

29

30 Other useful resources data/assets/pdf_file/0008/ /e96854.pdf Relatively short document with tips to improve health literacy at different levels Free book

31 Take home messages Low health literacy is common, also in Europe It impacts self-management and clinical outcomes Health literacy should be formally assessed in every patient Appropriate strategies to overcome health literacy problems should be implemented, focusing not only at the patient, but also at professionals and the health care setting Several interesting resources are available online for free

32 Don t let the situation confuse you...

33

34 HEALTH LITERACY The different layers within health literacy Basic/functional literacy Basic reading and writing skills needed to develop a basic knowledge of health conditions and health systems Communicative/interactive literacy Communication and social skills which can be used to extract information and derive meaning from different forms of communication and to apply new information to changing circumstances Critical literacy The advanced cognitive and social skills, which can be applied to critically analyse information, and to use this information to exert greater control over life events and situations relation to individual and community level wellbeing goals (Nutbeam Health Promot Int 2000; 15: )

35 Prevalence of chronic disease and causes of death in Belgium 27.2% of Belgian population suffers from 1 chronic illness Healthcare expenditure: 10.5% of GDP in Belgium An estimated 70-80% is spent on chronic illness management 10,7 2,2 10,4 5,8 8,1 28,4 2,1 infections cancer endocrine psychiatric cerebrovascular respiratory external other 32,3 KCE report 190A. Position paper: organisatie van zorg voor chronisch zieken in België, 2012

36 Determinants of nonadherence: a multi-faceted problem Healthcare systemrelated Socioeconomic Conditionrelated Patientrelated Treatment related Sabate. World Health Organization 2003

37 Self-management support: what s in a name? a portfolio of techniques and tools that help people choose healthy behaviors Important to understand the skills clinicians need which support they need to help people to change Information provision alone is unlikely to be sufficient to motivate behavioral change and improve outcomes

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