WHO Collaborating Centre for Palliative Care, Policy and ... @jonathankoffman WHO Collaborating Centre for Palliative Care, Policy and Rehabilitation Is the experience and expression

Dr Jonathan Koffman

Cicely Saunders Institute Department of Palliative Care, Policy & Rehabilitation King’s College London www.csi.kcl.ac.uk @jonathankoffman

WHO Collaborating Centre for

Palliative Care, Policy and

Rehabilitation

Is the experience and expression of living with severe MS ethnically and culturally patterned?

L.GB.03.2014.5852p November 2014

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Outline for this presentation

•Concepts, concepts, concepts

•MS and minority ethnic groups:

•What we know and importantly what we don’t:

• findings from mixed methods cross-sectional study

– MS progression and symptom burden

• Implications for clinical practice

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Understanding diversity and conceptual sloppiness

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MS and geo-epidemiology

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MS and ethnicity: what do we know already and what questions remain?

• Number of people with the disease from BME groups has increased (Compston & Coles 2002)

• Ethnicity thought to influence clinical manifestations of MS e.g. more aggressive disease and greater disability (Alshami & Jeffrey 1998;Cree et al. 2004;Kaufman et al. 2003)

• BME groups also been shown to respond less well to treatment (Cree, Khan, Bourdette, & Goodin 2004)

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Study aim

•To describe and compare the experience of Black Caribbean and White British people severely affected by MS living in south London, and identify those with advanced disease that have needs that might benefit from palliative care

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Anatomy of our study

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Study design

• Concurrent mixed model:

• primary purpose to gain broader perspectives than using one method alone

• ‘embedded’ method addresses different questions than dominant method, or seeks different information

QUANT

qual

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Study setting

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Participants: inclusion criteria • Adults (18+yr) with confirmed MS diagnosis who are

‘White British’, ‘Black Caribbean' and ‘Asian’, or who regard themselves as being from these ethnic groups;

• Disability score equal/greater than 6.0 according to EDSS (single item 10 point interviewer assessed scale used to assess disability (Kurtzke 1983) and who have been at level or lower for at least 2 months:

• Family members/main informal caregivers of White British and Black Caribbean PwMS only, who are 18+yrs, and able to consent

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Data collection: assessment of palliative care needs

• Multiple Sclerosis Impact Scale (MSIS) (Hobart et al 2001)

• Modified Fatigue Impact Scale (MFIS) (Fisk et al 1994)

• Hospital Anxiety and Depression Scale (HADS) Zigmond & Snaith 1983)

• Palliative Care Outcome Scale + POS-MS symptoms (Hearn & Higginson 1999, Higginson & Donaldson 2004))

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Recruitment of Black Caribbean & White British participants

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Doing the work: becoming a ‘reliable witness’

•Many potential transformations of identity wrought by study participants

•Not infrequently promoted to status of ‘reliable witness/confidante’ (Stanworth 2004)

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Doing the work: a divesting methodology • A very valuable lesson....

• Sensitive perceptions require suspension of conventional expectation

• Usually when you listen to some statement , you hear it as a kind of echo of yourself. You are actually listening to your own opinion (Longaker 1997:147)

• Counter intuitive that when listening to unwell people important to divest oneself from notion that MS was worst thing that could ever happen :

• overwhelming loneliness brought on by death of girlfriend

• long struggle with alcohol/drug dependency and refractory depression, suicide attempt

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Participant characteristics - PwMS White British (n=43) Black Caribbean (n=43) P value for statistical test

Place of birth: United Kingdom Caribbean

43 (100%) 0

34 (79%) 9 (21%)

Fisher’s exact p=0.003

Gender: Male Female

15 (35%) 28 (65%)

11 (26%) 32 (74%)

Chi-sq 0.88 (df 1), p=0.35

Mean age, SD (range) Median 57.5 yrs, 12.1 (35-88) 57.7 47.7 yrs, 10.8 (27-75) 48.1

t-test=3.98(df 84), p<0.001

Type of MS: Relapsing remitting Secondary progressive Primary progressive

8 (19%) 19 (44%) 16 (37%)

16 (37%) 13 (30%) 14 (33%)

Fisher’s exact p=0.14

Age at: Onset mean yrs, SD Diagnosis mean yrs, SD

34.3 yrs, 13.9 41.4 yrs, 14.3

34.1 yrs, 11.2 37.4 yrs, 11.3

t-test 0.08, p=0.94 t-test 1.43, p=0.16

MS duration from diagnosis: Mean yrs, SD (range) Median

16.1 yrs, 11.2 (1.67-50.29) 12.4

10.2 yrs, 5.7 (0.89-23.27) 9.5

t-test 3.01, p=0.004

EDSS score: 6.0 6.5 7.0 7.5 8.0 8.5 9.0

15 (35%) 9 (21%) 4 (9%) 3 (7%) 8 (18%) 2 (5%) 2 (5%)

10 (23%) 14 (33%) 6 (14%) 4 (9%) 6 (14%) 1 (2%) 2 (5%)

Fisher’s exact p=0.77

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MS-related physical and psychological symptoms

•POS-S identified that BC and WB PwMS both reported mean of 9 symptoms (BC PwMS mean 8.6; SD: 3.4; range 2– 15 v/s WB PwMS mean 9.1; SD: 3.3; range: 2–16):.

• 14/18 symptoms reported in both groups as ‘severe’ / ‘overwhelming’ [Especially fatigue, pain and problems with ambulation]

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MS-related physical and psychological symptoms

•No differences between two groups using Multiple Sclerosis Impact Scale-29 (MSIS-29)

•BC PwMS reported mean of 22 areas associated with MS impact (range 7–29) compared to 23 areas among WB PwMS (range 10–29)

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MS-related physical and psychological symptoms

•Fatigue, measured by MFIS, and depression and anxiety measured by HADS similar between groups

•But…cognitive impairment measured by Blessed Orientation Memory Concentration Test (BOMCT) differed between groups – scores for BC PwMS more than 1.5X greater than WB counterparts (F=9.65, p=0.003)

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Symptom-related concerns reported by Black Caribbean and White British participants MS related symptoms Black Caribbean

(n=15)

White British

(n=15)

Depression and anxiety 6 3

Pain 5 4

Fatigue 4 4

Urinary incontinence 4 4

Stiffness 4 2

Spasms and tremors 4 1

Cognition, memory and confusion 3 1

Altered balance 2 1

Sores 1 0

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Unplugged, hollow and empty

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Unplugged, hollow and empty

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Scared of living

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Everything’s like a sieve

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MS disease progression

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MS disease progression

Time taken to reach EDSS stage from onset of symptoms (self- reported

White British (n=43)

Black Caribbean (n=43)

P value for statistical test

EDSS 4.0 mean yrs, SD (range) median

13.1 yrs, 12.0 (0.0-48.2) 10.2

5.9 yrs, 6.4 (0.0-25.6) 2.7

U=258.5, p=0.013

EDSS 6.0 mean yrs, SD (range) median

14.4 yrs, 11.9 (0.6-51.6) 12.7

7.6 yrs, 6.3 (0.9-25.9) 6.1

U=535.5, p=0.011

EDSS 8.0 mean yrs, SD (range) median

15.3 yrs, 13.9 (2.0-43.0) 10.2

12.0 yrs, 6.7 (5.9-24.6) 8.7

U=95.0 p=0.5

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MS disease progression

Progression metrics BC score WB score ANCOVA score

Progression Index (PI) (current EDSS based on clinical assessment/time clinical diagnosis in yrs) - mean, SD (range) median

0.74, 0.9 (0.16–5.50) 0.55

8.23, 1.37 (5.16–9.94) 8.47

4.04, p=0.048

Multiple Sclerosis Severity Score (MSSS) (current EDSS based on clinical assessment/time clinical diagnosis in yrs) - mean, SD (range) median

8.80,1.11 (5.35–9.93) 9.32

8.23, 1.37 (5.16–9.94) 8.47

10.30, p<0.001

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MS disease progression

• It was, it was that quick. ...It was very scary…It’s just a lot of frustration you know, and it plays with your mind as well. It had a lot of psychological effect. Because I wasn’t always in a wheelchair and you know, people have commented on, you’re, you’re getting worse. You were on sticks to crutches, now to the wheelchair. And its playing on your mind and you’re thinking ‘‘Oh OK, maybe I am getting worse’’. I just thought, I’d have gone right down hill. (BC PwMS 79)

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MS disease progression

• I got sick so quickly. I lost the feeling down all the left side of my body ...and then I was OK. And then after about a year… my daughter being born I got sick again. But I got worse. I had to go back on, on the treatment. I couldn’t stay off the treatment. I wanted to breast feed her for as long as I could, but I couldn’t, I couldn’t do it. You’re upset and you’re, you’re hurting but you don’t want to explain it to other people or see other people, see that you’re hurting, you’re crying. I didn’t want that.

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Methodological reflections

•‘Racialised’ differences’ between research participant and interviewer

•PI can be skewed toward higher scores by short disease duration and toward lower scores by long disease durations

•Recall bias

•Cultural equivalence of measurement tools

•Study cross sectional

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Discussion of findings 1

• MS progression noted as being more aggressive among some ethnic groups (Ferreira Vasconcelos et al 2010, Kaufman 2003)

• MS appears to progress more quickly among BC than WB PwMS

• NO consensus method for measuring progression using single, cross-sectional assessments of disability Used PI, MSSS and patients’ recall of events

• Correspondence with qualitative findings

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Discussion of findings 2

•Higher levels of cognitive impairment among BC than WB PwMS

•Cognitive issues among African Americans severely affected by MS previously reported (Buchanan et al 2004)

•triangulation with qualitative findings

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Discussion of findings 3

•Observed high symptom prevalence and burden across both ethnic groups with participants experiencing average of 9 symptoms according to POS-S

•Most symptoms rated as severe or overwhelming

•Again considerable correspondence with qualitative findings

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Clinical implications

• Delays in diagnosis must be avoided

• More frequent reviews justified by healthcare services

• Interventions to support people who perceive MS as assault on identity should be developed to achieve ‘normalisation’ and enhance self-identity

•cognitive behavioural therapy may offer solutions

•role for palliative care

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