Communicating a Diagnosis of Dementia. Jemima Dooley, Rose McCabe And the Shared Project Team

Transcription

1 Communicating a Diagnosis of Dementia Jemima Dooley, Rose McCabe And the Shared Project Team r.mccabe@exeter.ac.uk

2

3 Making the study possible were

4 NICE states People should be told their diagnosis as clearly and honestly as possible. Without this knowledge, people cannot begin to make sense of what is happening, nor can they plan effectively for their future

5 ShareD study DEVON THREE SITES ACROSS ONE TRUST DIAGNOSTIC FEEDBACK APPOINTMENTS WITH 11 CLINICIANS LONDON SIX SITES ACROSS THREE TRUSTS DIAGNOSTIC FEEDBACK APPOINTMENTS WITH 13 CLINICIANS

6 Data 21 doctors psychiatrists and geriatricians 81 video-recorded diagnosis feedback meetings 60% patient consent rate 9 UK memory clinics One stop shop & conventional pathway 75% meeting patient for the first time

7 Participant Characteristics Variable London Devon N % or mean (SD) N % or mean (SD) Gender male female Age (9.65) (10.49) Marital status Single Married/Partnership Separated Divorced Widowed Ethnicity White British Other Education level School Further Education Higher Education

8 Carer Characteristics Variable London Devon n % or mean (SD) n % or mean (SD) Gender male female Age (16.31) (14.29) Relationship to patient Spouse/partner Child Child in law Sibling Friend Other Lives with patient? No Yes

9 Professional seen The majority of patients saw a psychiatrist. 60 saw a geriatrician. 140 Number of consultations Psychiatrist Geriatrician Specialty doctor Registrar London Devon

10 Diagnosis Of the 215 patients, nearly half (100) received a diagnosis of dementia. The next most frequent diagnosis was mild or vascular cognitive impairment Dementia MCI or VCI No diagnosis Further tests other All London Devon

11 Cognitive test scores (ACE-III) grouped by diagnosis Dementia MCI or VCI No diagnosis Further tests other

12 Structure of diagnostic feedback meeting Stage 1: Eliciting Orientation Stage 2: Eliciting Perspective on Symptoms Stage 3: Feeding back the Test Results Stage 4: Delivering the Diagnosis Stage 5: Discussing Treatment and Support

13 Stages of Dementia Diagnosis Delivery Average meeting length: 28:07 (08:25-01:04:05) Elicit Patient s Orientation Feed Back Test Results Diagnosis Delivery

14 Feeding back test results Cognitive Tests Average time spent 00:47 (00:05-05:10) Brain Scan: Average time spent 01:29 (00:05-13:05) Test Feedback includes indication of the consequences: Prepares patient for the diagnosis (Maynard, 2003) Can help gauge patient perspective on the problem

15 Feeding back test results e.g. 1

16 Feeding back test results e.g. 1 Forecasting tests show memory getting worse DR: (name) did the tests again this time.hhh (0.8) it does seem that things have got quite a bit worse with the memory PT: w worse DR: yes yeah I mean you did okay on some of the test but.hh I think a lot of the test you- you- (.) you struggled quite a bit with.h hh so there was quite a big change from (.) from the time before PT: yeah ah (inaudible) you know (0.8) the old age can come [in as well] you know DR: [mm ] Resistance attributing to age DR: yeah I mean I think- I think what we d say is is that is that (.) i- it is (.) the problems are more than we would expect for someone [of you re age] PT: [mm er ] Repeat evidence to work against resistance

17 Feeding back test results e.g. 2

18 Feeding back test results DR: well I can give you a score out of a hundred PT: right (0.4) No indication of consequence DR: so if naught was the worst you can do and a hundred was the best [you got] seventy eight PT: [mhm ] (1.1) Patient misunderstanding PT: well that s not bad [is it ah heh] DR: [we- we d ] well (0.6) I I kind of think it probably is significant for yourself (0.5) DR: cause although for some people I might think seventy eight s not- not so bad score (0.8) you you re smarter than the average person. (.) PT: oo hooray (.) CR: huh huh hah hah hah Misalignment

19 Feeding back test results PT: I was an accountant actually DR: well- well- well e[xact]ly a[nd a]nd- (0.3) that that s PT: [mm ] [mm ] DR: the bit (0.3) that (0.3) that got (0.4) got me thinking (0.3) DR: I ll tell you why because (0.5) the- where you lost points and you lost points on the um (.) memory tests (0.5) a bit on the visuospatial.h but also on on the maths test (.) PT: [(?)] DR: Use of medical jargon Clarify evidence to work against misunderstanding [and] that s why I thought that was (.) that was probably significant (.) for you [if you know what I mean] PT: [oh right ] yeah ha ha haha oh did I

20 Feed Back Test Results Variation in Information given: Cognitive Tests: 00:05-05:10 minutes Brain Scan: 00:05-13:05 minutes Feedback includes indication of consequences: Prepares patient for the diagnosis (Maynard,2003) Can help gauge diagnosis reaction

21 Diagnosis proper: 2 formats All doctors named dementia no avoidance of diagnostic label suggested by previous research Average time spent on diagnosis discussion: 02:38 (00:20 10:10) Indirect delivery 59% Direct delivery 41%

22 Indirect Delivery

23 Direct delivery

24 Indirect and Direct Delivery of a Dementia Diagnosis 1. Indirect inference required More sensitive Example 1 1 DR: it s hh (.) they- we we call this combination of (.) you 2 know m memory difficulty and blood vessel change in the 3 brain 4 PT: mm 5 DR: we call that vascular dementia. 6 (.) Re-reference evidence and symptoms Working against resistance Downplaying severity Softening the blow 2. Direct - Blunter, enhances understanding Example 2 1 DR: erm (.) so the name that we give to these sorts of memory 2 problems that develop (.) when we (.) er in in older age 3 (0.3) are- (0.4) is that I think that you have a m- a mild 4 form of a condition called dementia 5 (.)

25 Prognosis Prognosis discussed directly in 62% meetings 1/3 of prompted by patient or companion questions Discussed indirectly in context of medication in 25% meetings Not mentioned in 13% of meetings

26 Prognosis discussed directly

27 Prognosis Explicit discussion of prognosis DR: the nature of the condition itself is that it does tend (0.4) tend to get worse over time (0.8) DR: Downplaying Qualifying language but (0.4) that time period isn t (.) a matter of weeks or months it s over many years (.) normally that we see (.) changes (.) Emphasising slow progression DR: um (0.4) so (1.2) it s not so- (.) what I m not suggesting is that you re going to see things getting worse very quickly CR: mm DR: but it (.) still it s quite useful for you and your family to know that it it may be that over time (0.8) things (0.4) you know things might change a little bit

28 Prognosis discussed indirectly

29 Prognosis discussed indirectly DR: I mean in terms of other (0.3) the other thing that we can do is to give you a tablet if you would like PT: mm DR: um (.) a memory table[t ] PT: [ye]ah DR: um which (.) um (1.4) what we find is on average PT: people tend to what it does is it stabilises things for about twelve to eighteen months mhm No explicit discussion of prognosis Non-specific language

30 Findings No avoidance of the D word 41% direct deliveries - rare in other settings Direct delivery more likely to lead to patient resistance in other medical settings Used more often with people with lower cognitive test scores aim to maximise understanding? Indirect delivery need for inferential work by the person receiving diagnosis Downplay severity to preserve hope

31 If diagnosis is (at least partly) to enable planning for the future, what is the optimal balance honesty and hope so people can benefit from diagnosis? HONESTY HOPE

32 Focus groups with doctors Bailey et al No ongoing relationship with patients Concerns about lack of pre-diagnostic counselling Emotionally overwhelming the patient Concerns about lack of post-diagnostic support & lack of personal follow-up Accuracy of diagnosis given pressures on memory clinics and increasing referrals Increasing discussion of dementia in the public sphere unrealistic expectations of treatment? Stigma of dementia

33 Shared decision making by clinician: mean OPTION Mean meeting length mins (range ) H02 (n=3) H03 (n=3) H07 (n=1) H17 (n=1) H20 (n=3) H21 (n=5) H22 (n=4) H23 (n=5) H24 (n=3) H30 (n=1) H62 (n=2) H40 (n=8) H41 (n=6) H43 (n=7) H44 (n=10) H49 (n=3) H50 (n=3) H51 (n=2) H63 (n=1) H68 (n=1) H81 (n=2) London N refers to number of consultations where OPTION was scored. Devon

34 Involvement in decision making about medication n=74 Frequency Most consultations rated with the OPTION scored low- below 50 out of 100. Scoring Higher score is better OPTIONtotal100

35 OPTION Scores by Item Present multiple options Establish partnership Describe differences in options Elicit patient preference s Preferences incorporated into plan? Boxplots showing distribution of OPTION 5 item scores

36 Shared Decision Making & Cognition, Meeting Length Plannedanalyses found that: OPTION not associated with: cognitive test score preference for autonomy in healthcare decisions patient or carer satisfaction with decision OPTION scores lower for those who had more individuals present (p=0.07)

37 Scatter plot showing OPTION score and meeting length OPTION score min 16min40s 32min20s 50min Length of Meeting OPTIONtotal100 Fitted values

38 Others aspects of ShareD study Shared decision making balancing involvement of patient and carer Interviews with people with dementia one week after diagnosis Interviews with carers Recordings of post-diagnostic visits

39 Thank you for listening! This is a summary of independent research funded by the National Institute for Health Research (NIHR) s Research for Patient Benefit Programme (Grant Reference Number PB-PG ). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.