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

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1 WHO Collaborating Centre for Palliative Care, Policy and Rehabilitation Is the experience and expression of living with severe MS ethnically and culturally patterned? Dr Jonathan Koffman Cicely Saunders Institute Department of Palliative Care, Policy & Rehabilitation King s College L.GB p November 2014

2 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 crosssectional study MS progression and symptom burden Implications for clinical practice

3 Understanding diversity and conceptual sloppiness 3

4 MS and geo-epidemiology

5 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)

6

7

8 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

9 Anatomy of our study

10 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 qual QUANT

11 Study setting

12 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

13 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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15 Recruitment of Black Caribbean & White British participants

16 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)

17 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

18 Participant characteristics - PwMS Place of birth: United Kingdom Caribbean Gender: Male Female White British (n=43) Black Caribbean (n=43) P value for statistical test 43 (100%) 0 34 (79%) 9 (21%) 15 (35%) 28 (65%) 11 (26%) 32 (74%) Mean age, SD (range) Median 57.5 yrs, 12.1 (35-88) yrs, 10.8 (27-75) 48.1 Type of MS: Relapsing remitting 8 (19%) 16 (37%) Secondary progressive 19 (44%) 13 (30%) Primary progressive 16 (37%) 14 (33%) Age at: Onset mean yrs, SD Diagnosis mean yrs, SD MS duration from diagnosis: Mean yrs, SD (range) Median EDSS score: yrs, yrs, yrs, 11.2 ( ) (35%) 9 (21%) 4 (9%) 3 (7%) 8 (18%) 2 (5%) 2 (5%) 34.1 yrs, yrs, yrs, 5.7 ( ) (23%) 14 (33%) 6 (14%) 4 (9%) 6 (14%) 1 (2%) 2 (5%) Fisher s exact p=0.003 Chi-sq 0.88 (df 1), p=0.35 t-test=3.98(df 84), p<0.001 Fisher s exact p=0.14 t-test 0.08, p=0.94 t-test 1.43, p=0.16 t-test 3.01, p=0.004 Fisher s exact p=0.77

19 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]

20 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)

21 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)

22 Symptom-related concerns reported by Black Caribbean and White British participants MS related symptoms Black Caribbean (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 White British (n=15)

23 Unplugged, hollow and empty

24 Unplugged, hollow and empty

25 Scared of living

26 Everything s like a sieve

27 MS disease progression

28 MS disease progression Time taken to reach EDSS stage from onset of symptoms (selfreported EDSS 4.0 mean yrs, SD (range) median White British (n=43) 13.1 yrs, 12.0 ( ) 10.2 Black Caribbean (n=43) 5.9 yrs, 6.4 ( ) 2.7 P value for statistical test U=258.5, p=0.013 EDSS 6.0 mean yrs, SD (range) median 14.4 yrs, 11.9 ( ) yrs, 6.3 ( ) 6.1 U=535.5, p=0.011 EDSS 8.0 mean yrs, SD (range) median 15.3 yrs, 13.9 ( ) yrs, 6.7 ( ) 8.7 U=95.0 p=0.5

29 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 Multiple Sclerosis Severity Score (MSSS) (current EDSS based on clinical assessment/time clinical diagnosis in yrs) - mean, SD (range) median 0.74, 0.9 ( ) ,1.11 ( ) , 1.37 ( ) , 1.37 ( ) , p= , p<0.001

30 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)

31 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.

32 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

33 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

34 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

35 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

36 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 selfidentity cognitive behavioural therapy may offer solutions role for palliative care

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