1. The Impact of Mindfulness-based Stress Reduction (MBSR) on Depression, Anxiety and Stress in People with Parkinson’s Disease Kelly Birtwell kelly.birtwell@mhsc.nhs.uk Linda Dubrow-Marshall l.dubrow-marshall@salford.ac.uk

2. Aim To evaluate the impact of an 8-week Mindfulness-Based Stress Reduction course (MBSR) on people with Parkinson’s disease (PD) experiencing depression, anxiety and stress, or difficulty coping with PD Completed as part of MSc Applied Psychology (Therapies) degree, University of Salford Other authors: Dr J Raw, T Duerden & A. Dunn

3. Parkinson’s disease Affects 120,000 people in the UK Mainly older adults, age 50+ People under 40 can be affected, 10,000 diagnosed ‘young onset’ per year Exact cause unknown No cure, symptoms controlled by medication. Treatment is complex Motor symptoms: resting tremor, bradykinesia, rigidity, postural instability

4. Parkinson’s non-motor symptoms 40-45% of patients experience depression, up to 40% experience anxiety Anxiety and depression can predate motor symptoms by several years Apathy, mild cognitive impairment (MCI), sleep problems, autonomic disturbance, pain NMS have major impact on quality of life Improved management of NMS is needed New treatments needed, and further research into psychosocial interventions for anxiety and depression in PD

5. Mindfulness “Paying attention in a particular way: on purpose, in the present moment and non- judgementally” (Jon Kabat-Zinn, 2004) Building blocks: intention, attention, attitude (Shapiro et al, 2006) 7 attitudes: non-judging, patience, a beginner’s mind, trust, non-striving, acceptance and letting go (Kabat-Zinn, 2004) Formal or informal practice One-to-one or group mindfulness courses MBCT (NICE guidelines), MBSR

6. MBCT & MBSR MBSR: group based, 8 week programme Includes stories, poetry, metaphors Yoga / mindful movement Physiological and psychological bases of stress For physical and mental health problems More suitable for general population Described but not manualised (responsive) MBCT: integration of MBSR and CBT NICE guidelines recommend MBCT for people currently well, with a history of 3 or more episodes of depression Manualised (developed through RCT)

7. Mindfulness - applications MBSR for pain (Kabat-Zinn et al, 1985), GAD (Kabat- Zinn et al, 1992), psoriasis (Kabat-Zinn et al, 1998) MBSR increases grey matter density (Holzel et al 2011) Fitzpatrick et al (2010): MBCT acceptable and of benefit to people with PD Dreeben et al (2011): MBSR for people with PD, reduced anxiety and depression, psychological adjustment Sephton et al (2011): MBSR for people with PD, slower breathing and reduced evening cortisol levels Bucks et al (2011): coping processes and quality of life in PD, recommended mindfulness Pickut et al (2013): increases in grey matter density of people with Parkinson’s who attended a mindfulness course

8. Method: Patient & public involvement Patients with Parkinson’s were involved throughout the life of the study: Discussion of the initial idea Choosing outcome measures Adaptations to the MBSR course Review and feedback of the study documents

9. Design and outcome measures Mixed methods design Data collected at baseline, wk8, and wk16 Age and Parkinson’s history recorded Primary outcome measure: DASS-21 Secondary outcome measures: –PDQ39 (well-being and stigma) –MAAS –Qualitative follow-up questionnaires

10. DASS-21 – Primary Outcome Measure Depression Anxiety & Stress Scales (DASS-21) Lovibond & Lovibond 1995 Short form of the DASS – 21 questions Reliable and valid in elderly population Used in previous mindfulness studies Higher scores indicate higher levels of distress / worsening of symptoms

11. PDQ39 – Secondary Outcome Measure Parkinson’s Disease Questionnaire 39 (Jenkinson et al 1995) Disease specific rating scale for PD 39 questions over 8 dimensions: –mobility, activities of daily living (ADLs), emotional well-being, stigma, social support, cognition, communication, bodily discomfort Higher scores indicate worsening of symptoms Widely used and fully validated Developed with patients to cover areas of life that are important to them

12. MAAS – Secondary Outcome Measure Mindful Attention Awareness Scale (Brown & Ryan, 2003) 15 item questionnaire Provides overall rating of mindful awareness Higher scores indicate increased mindful awareness Suitable for meditation naïve participants Validated scale

13. Qualitative follow-up questionnaires Designed specifically for this study Questions about taking part in the MBSR course, and in the study What was helpful or unhelpful What would they change Has their experience of living with PD changed since attending the course What would they tell others considering attending an MBSR course

14. Participants & recruitment Participants referred from an Acute Hospital Trust Inclusion criteria –Diagnosis of idiopathic Parkinson’s disease (Parkinson’s UK Brain Bank criteria) –Identified as experiencing depression, anxiety, stress, or difficulty coping with PD Exclusion criteria –Lacking capacity to consent –Just begun a major life change

15. MBSR course Developed by Jon Kabat-Zinn 8 week, group course 1 session per week, up to 3 hours duration One full day ‘silent retreat’ towards the end of the course Daily home practice, up to 45 minutes CDs and worksheets provided Delivered by experienced mindfulness teachers

16. MBSR course adaptations Order of practices and curriculum – body as source of distress Option of sitting for body scan Duration of practices shortened Full day ‘retreat’ not included Other studies made adaptations (e.g. Sephton et al, 2011).

17. Findings Recruitment and reasons for withdrawal 13 participants were recruited 9 attended wk1, 6 completed full course Withdrawal before the MBSR course began: –Scheduling conflict = 2 –Unexpected health issues = 2 Withdrawal after the first MBSR session: –Scheduling conflict = 1 –Unexpected health issues = 1 –Did not wish to continue = 1

18. Demographics and PD history 6 Participants: male = 5, female = 1 Mean age = 67.96 (5.64 SD, range: 60.8 - 72.9) PD history: Mean (SD)Range Age at disease onset59.13 (7.39)51.2 - 70.5 Age at diagnosis60.33 (5.92)55 - 70 Disease duration8.82 (5.47)2.16 - 18.35 Hoehn & Yahr staging (symptom progression) 2.33 (0.68)1.5 - 3.0

19. DASS-21 Mean scores for depression, anxiety and stress decreased Statistically significant improvements

20. DASS-21 – severity categories DepressionAnxietyStress Normal 0-90-70-14 Mild 10-138-915-18 Moderate 14-2010-1419-25 Severe 21-2715-1926-33 Extremely Severe 28+20+37+ Score range: 0 - 42

21. PDQ39 At wk8 and wk16 levels of change varied across the dimensions

22. PDQ39 Results were not statistically significant Continuous improvements seen in 3 dimensions: mobility, stigma, social support ADLs and well-being showed increase in problems at wk8 then return to baseline levels at wk16 Problems with bodily discomfort increased at wk8 then decreased at wk16, but not to baseline levels Cognitive impairment and communication worsened at wk8 then stayed the same or worsened again at wk16 The mean summary index score worsened at wk8 then returned to baseline at wk16

23. MAAS Little change in self-reported mindfulness Mean scores: 3.83 – 3.77 – 3.90 Slight decrease at wk8 Slight increase at wk16 compared to baseline Results not statistically significant Score range: 1-6, higher score = increased mindful awareness

24. Qualitative follow-up questionnaires Overall participants found the course worthwhile and felt some benefit ‘Has your experience of living with Parkinson’s changed at all since attending the MBSR course?’

25. Qualitative follow-up questionnaires Some confusion reported: –Some mindfulness concepts –Aims of the practices –Terminology used Needed fuller explanations earlier in course Mindfulness of breath practiced most often

26. What would you tell other people with Parkinson’s considering attending an MBSR course? “I would tell them not to be put off too soon, as its relevance takes some time to become obvious.” “Go with an open mind, enjoy the course.” “To go ahead and try it.” “Yes get involved because it's made me think about things and realise I'm not on my own.” “Do it.” “Prepare to be stimulated in an unusual way.”

27. Conclusion Mindfulness-based interventions could benefit people with Parkinson’s The intervention is acceptable to patients Interpretation of the results is limited – small sample size and lack of control group

28. Future research Larger sample sizes required Carers could also participate in the mindfulness course Further adaptations could be considered to meet the needs of people with PD People with Parkinson’s should be involved in all stages of future studies, including study design

29. Questions kelly.birtwell@mhsc.nhs.uk l.dubrow-marshall@salford.ac.uk