Designing Decision Aids That Work In Practice: Enabling Shared Decision Making

Transcription

1 Leeds Institute of Health Sciences Designing Decision Aids That Work In Practice: Enabling Shared Decision Making Hilary L Bekker (PhD) Associate Professor of Psychology and Medicine h.l.bekker@leeds.ac.uk

2 Purpose Talk Introduction to shared decision making in healthcare. Understanding how people make decisions. What decision aids are and why they work. Challenges for shared decision making and patient decision aids for speech and language therapy options.

3 Context: Speech and Language Therapy To treat speech, language and communication problems in people of all ages to help them better communicate. Range of therapeutic options. Delivered in different ways. Only treatment, and/or part of rehabilitation. Evidence on effectiveness of treatment options. Evidence on therapeutic burden to patient. Requires self-management by the patient, and/or carer.

4 Shared Decision Making & Speech and Language Therapy. Shared decision making part of good practice. o Practitioner and patient are partners in care. o Patients involved in decisions. o Therapies are in the patients best interest, effective and values. o Services create opportunities enabling patients communication. o Patients are supported to express health and wellbeing needs. (RCSLT, 2013; GMC, 2013; NHS policy, 2010; The King s Fund, 2011)

5 What is Shared Decision Making? an interactive process in which patients and professionals collaborate to choose healthcare (Charles et al, 1997) Consultation conversation, both patient and professional: Exchange Information/ knowledge about treatments Express preference/ values about treatments Explicit reasoning about treatment choices Agree and implement choice (Stacey et al, 2009)

6 Assumes an active role for patient and professional Explicit discussion of: relevant knowledge about treatment options & health problem rationale for best option for the patient, clinically effective and fits into lifestyle. Not patient preferences for involvement in decision making patient preferences for information professional choice of clinically best option professional choice of best option based on patient history

7 Isn t Shared Decision Making happening in practice? No, not really. Professionals give information about a procedure or therapy. Patients give values and ask questions based on professional s cue. Professionals produce more and more information but Patients report not having a choice and not being informed. (Légaré, 2014)

8 Professionals Communication. (Lifford et al, 2012) 14 consultations 41 minutes long Doctors, patient + carer Lung cancer treatment

9 The Problem and Solution. INFORMED DECISIONS MY LIFE PATIENT Experiences Knowledge Motivation Skills EVIDENCE-BASED DECISIONS MY DELIVERY OF CARE SHARED DECISIONS HEALTH & TREATMENT PRACTITIONER CONSULTATION PROCESS Exchange understanding Reason about Preference Implement Agreed Choice Experiences Knowledge Motivation Skills OTHER PEOPLE & INFORMATION carer, family, friends, patients, media infrastructures, policies OTHER PEOPLE & INFORMATION evidence, health/social care team, policies, infrastructure

10 Supporting People s Decisions About Healthcare Options. Different interventions for different aims: Patient Decision Aids help people make informed decisions between options. Professional Decision Support enable practitioners to make evidence-based (expert) choices Shared Decision Making Support within consultations enable a more effective process of choosing healthcare collaboratively between people and professionals.

11 How do People Make Decisions? Why did you choose your first car? Why did you choose your last car? Have you ever regretted buying a car?

12 All People Make Decisions by People create mental representations of world out there. People use the same hardwiring, different experiences. Brain works all the time; attends/ excludes information. Brain makes unconscious judgements. Limited capacity for conscious attention. Attention focused by external and internal cues. Little insight into (influences) on our decisions

13 Information Processing Strategy: System 1 System 1 (intuitive-experience, fast), context dependent: Attend to part of decision problem or decision context. Use rule of thumb (heuristic), from bit of information. Rules of thumb informed by experience or beliefs. Sub-conscious, quick, little effort or emotion. Satisfactory choices More likely to regret choice or make wrong choices.

14 Information Processing Strategy: System 2. System 2 (deliberative-analytic, slow), problem dependent: Attend to the details of the decision problem. Evaluate the pros and cons of all options. Make choice based on trade-offs between evaluations Conscious, time-consuming, emotionally demanding. Results in more stable values and choices Less likely to regret choice.

15 Making Good Decisions. A good or informed decision is one made well: Consider information about advantages and disadvantage of all options and consequences, without bias. Evaluate information in accordance with own beliefs. Trade-off these evaluations to reach a decision. (Bekker et al, 1999; Frisch and Clemen, 1994) i.e. need to use system 2, deliberative strategies.

16 Treatment Choices are Decisions. Staff and patients use system 1 to make treatment choices: past experiences; someone else s choice; erroneous beliefs and preferences Few evaluate all the options and their consequences. Judgements biased by the way information presented Decisions biased by information attended to.

17 Information out there biasing. Context leaks information (e.g. Framing). People leak their opinions, values, preferences. People use leaks (subconsciously) to make choice: Affects judgments (e.g. risk perception, values). Influences choice (e.g. framing).

18 What is being leaked? Some people may prefer to go to hospital for hospital haemodialysis, while others want to be more independent and opt for home haemodialysis or peritoneal dialysis (NHS Choices website, 2009) NOTE: next two slides of presentations are removed for copyright purposes. Contained examples of other people s leaflets and photos to support dialysis decision making.

19 Patient Decision Aids. Evidence-based information to help people make informed decisions between treatment options. Written (Leaflet and Internet). Generic. For use independently of health professionals. Delivered within healthcare pathway.

20 Patient Decision Aids Stacey et al, Cochrane review (updated 2014) (n=115) Increase knowledge Increase understanding risk perception Choices made more congruent with values Increase feeling informed Increase perceived usefulness information. Decrease decisional conflict

21 Active Components Decision Aids Balanced, evidence-based and neutral information about all options. Health problem and treatment options from patient perspective. Structure to see choices in disease context (decision map). Statements about how to make a decision (guidance). Prompts to focus on what is important in their life (values, trade-offs, and preferences). (Bekker et al, 2013)

22 Embedding Patient Decision Aids in Service Delivery Demonstrate need (patient, professional, resources). Collaborate (users/ providers, patient/ professional organisations, health social scientists/ researchers). Identify practices supporting informed decision making. Minimise effort in delivering and/or using a decision aid. Identify what, who, when and how a decision aid can be used in practice. Evaluate acceptability to providers and users in practice.

23 EXAMPLES. Range of Patient Decision Aids Shared Decision Making Consultation Prompt.

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25 Example: Making Dialysis Decisions Health Problem: Change from Chronic Kidney Disease to Established Renal Failure Dialysis choice part of (self) management disease. Treatment Options. Dialysis options: Haemodialysis or Peritoneal Dialysis Service delivery options: Home/ Hospital; Assisted/ Not assisted Reversible likely to have the other choice. Uncertain when implemented after making decision. Impact on day-to-day activities for rest of patient s life.

26 Decision Map. Making explicit the options. Making explicit the decisions. Linking with changes in kidney disease. Signposting what the information describing. Note for a copy of The Dialysis Decision Booklet, go to Kidney Research UK (

27 Dialysis Option Map.

28 Readable, Meaningful, Neutral Chronic kidney disease (CKD) is a long-term health problem where the kidneys slowly stop working. Over time, the damaged kidneys stop working altogether. People are described as having progressive chronic kidney disease when tests carried out by the kidney service show the kidneys are getting worse. Dialysis is a treatment for people whose kidneys have almost completely stopped working. Dialysis treatments use equipment to do about 10% of the work that healthy kidneys do.

29 Common Aspects of Dialysis. Contact with Health Professionals People on dialysis will be seen regularly by their kidney health professionals when they go to hospital for their kidney disease check-ups. Operation for the access point People on dialysis need to have an access point made to take the fluid carrying the waste and toxins out of people s bodies, and clean fluid put back in. People will have an operation to make the access point. Caring for the access point People must keep their access point clean. Kidney healthcare professionals help people learn how to carry out dialysis safely and keep the access point clean. If bacteria get into the access point, the bacteria can cause a serious infection.

30 Balanced Information. Haemodialysis (HD) Peritoneal dialysis (PD) The different names Haemodialysis filters the waste products and extra fluid from the blood using a salt liquid (dialysate) and an artificial membrane with a machine outside the body. Peritoneal dialysis filters the waste products and extra fluid from the blood using a liquid (dialysate) which is placed inside the belly and then removed. How dialysis works Blood is pumped out from the body to a machine. The machine contains several membranes that separate the blood from liquid called dialysis fluid or dialysate. The membranes filter out waste product and extra fluid from the blood. These waste products pass into the dialysate. The used dialysate is then pumped out of the machine and thrown way. The cleaned blood is pumped back into the body. The blood is pumped through the machine several times. It takes about 4 hours to remove the waste products and fluid from the blood. This is called a dialysis session. Blood moves around the internal organs and intestines naturally inside the body. The membrane covering these organs is called the peritoneum. There is a space in the body made by the peritoneum called the peritoneal cavity. Liquid known as dialysis fluid or dialysate is put into this space. The peritoneum is a natural filter and allows the waste products and excess water to be drawn out of the blood into the dialysis fluid. After at least 1 or 2 hours, the used liquid is drained out and thrown away. Fresh liquid is added. The draining out of used liquid and the adding of fresh liquid is called a dialysis session or an exchange.

31 Decision Making Tips Thinking About the Dialysis Decisions. Read and think about all four options before deciding which one you want to try at this time. Knowing why you felt one dialysis treatment suited you better than another will be useful when deciding on the dialysis treatment you like best. Talking about dialysis with family, friends and kidney professionals. Many people find it useful to talk with family and friends about what is important to them about their lifestyle, health and different dialysis treatments. Different people have different questions or worries about the dialysis treatments. Talking through this decision with family members helps people explain to kidney professionals what is important to them about this decision, and why.

32 Summary Tables: Compare Across options Haemodialysis (HD) Peritoneal dialysis (PD) Haemodialysis Haemodialysis At home Peritoneal Dialysis Peritoneal Dialysis At a hospital or centre (HHD) Continuous Ambulatory Automated (CHD) (CAPD) (APD) Place of dialysis People travel to a People have dialysis Most people choose dialysis Most people choose dialysis care hospital or specialist sessions at home. sessions at home or work. sessions at home or work. centres for dialysis Can be any clean place. Can be any clean place. session. How dialysis works Attaching to a machine Attaching to a machine Attaching to a bag of fluid Attaching to a machine for for 4 hours per session for 4 hours per session for about 40 minutes per about 9 hours per session by the arm or leg. by the arm or leg. session by the belly. by the belly. Usual number of sessions in a week 3 days in a week At least 3 times a week (night or day) Every day Every night

33 Values Clarification. 1. List the activities you do now and want to keep doing when you are on dialysis. Hobbies (e.g., gardening, fishing, music, knitting) Socialising (e.g. with friends and/or family) Holidays, Trips Away (e.g. locally, abroad) Local travel (e.g. public transport, driving) 2. List the questions or worries you have about dialysis treatments The Access Point (arm, leg, belly) LIST Questions or Worries The Place of Dialysis (home, hospital, work, trips away) The Timing of Sessions (days, length, night, day)

34 Readable, Meaningful, Neutral Chronic kidney disease (CKD) is a long-term health problem where the kidneys slowly stop working. Over time, the damaged kidneys stop working altogether. People are described as having progressive chronic kidney disease when tests carried out by the kidney service show the kidneys are getting worse. Dialysis is a treatment for people whose kidneys have almost completely stopped working. Dialysis treatments use equipment to do about 10% of the work that healthy kidneys do.

35 Patients Used YoDDA When delivered as part of usual predialysis services: 97% read YoDDA; 66% more than once 72% showed it to someone else 23% wrote notes in it More details can be found at

36 Patient Views Useful, factual, neutral (predialysis patient) All the information included was explicit, useful and informative I don t feel the booklet could be improved upon. Perfect (predialysis patient) There s a lot of information, isn t there that s a good thing you want a lot of information. You don t want to be making decision about important things in your life based on a paragraph in a book (predialysis patient) It's really good quality. It's really high volume, I like [the] amount. I think it gives you loads of information about pretty much every eventuality. I think it's very good. Very readable and straight-forward (transplant patient)

37 Staff Views 4/6 renal units continued to use it after the project. I am the Lead nurse for the CKD service and was sent a copy of your excellent patient decision aid. I have shown this aid to our wider renal multi professional team and the chairman of our KPA and everyone agrees that we would very much like to use this with our patients. (Lead CKD Nurse) In short, I (and my colleagues) really like it. It is clear, tidy, well presented and, most importantly, informative (Consultant Nephrologist) I think we d probably say we d like to have it available working alongside of the work that we ve done. (Predialysis Nurse Specialist)

38 Challenges for Speech and Language Therapy. Evidence-base for therapy options by condition unclear. Patient/ carer evidence of benefits and burden therapy unclear. Use of written and information-based decision support in patients whose health problem is communication difficulties.

39 Summary. Shared Decision Making is seen as good practice. Practitioners need support to deliver care collaboratively. Patients need guidance to make informed decisions. Providing patient decision aids within a care pathway enhances patients engagement with care. Challenges to adapting shared decision making approaches within speech and learning context. Thank you for your attention.

40 Leeds Institute of Health Sciences Dr Hilary Bekker Faculty of Medicine and Health University of Leeds Charles Thackrah Building 101 Clarendon Road Leeds, United Kingdom LS2 9LJ