Online psychological therapies for chronic health conditions: Prospects and challenges.

1. Online psychological therapies for chronic health conditions: Prospects and challenges. Prof. Brian McGuire, School of Psychology & Centre for Pain Research, National University of Ireland, Galway brian.mcguire@nuigalway.ie School of Psychology

2. Overview Chronic conditions and move towards self-management. Describe benefits and growing use of internet-based psychological therapies for coping and adapting to chronic health conditions.  Research findings on chronic pain, chronic fatigue following cancer, and ongoing projects. Some of the challenges in making therapies more widely available. School Institute Name to go here

3. Chronic health conditions and self-management Chronic (>1 year) illnesses, impairments or conditions that limit functioning and may require ongoing medical care. School Institute Name to go here

4. Self-management Self-management means the tasks that individuals must undertake to live with one or more chronic (long-term) health conditions such as diabetes, heart failure, asthma or chronic obstructive pulmonary disease (COPD). Self-management support is the provision of education and supportive interventions, to increase patients’skills and confidence in managing their health problems. It includes regular assessment of progress and problems, goal setting, and problem-solving support. Living Well with a Chronic Condition: Framework for Self-management Support National Framework and Implementation Plan for Self-management Support for Chronic Conditions: COPD, Asthma, Diabetes and Cardiovascular disease. Health Service Executive, Nov. 2017. School Institute Name to go here

5. What is Pain? “An unpleasant sensory and emotional experience associated with actual or potential tissue damage….” (IASP, 1994). Acute - less than 3 months Chronic - longer than 3 months, most days

6. Aims of the PRIME study • Longitudinal, epidemiological study • Chronic non-cancer pain. • Prevalence of chronic pain. • Incidence of pain in a 12-month period. • Persistence of pain problems over 12-months. • Impact - physical, psychological, social. • Cost - health service utilisation, social welfare support, and lost productivity (Raftery et al, Pain 2011, J Pain 2012)

7. Prevalence and Duration of Pain • 35% had CP based on IASP definition. • Average duration 7.6 years (range 3 months - 50 years). • 23.6% pain for < 12 months. • 26.4% pain from 1-5 years. • 15.7% pain from 5-10 years. • 21.5% pain more than 10 years.

8. Where is the pain? Lower back primary site of pain and most limiting for all age groups except those >75 years - knee pain most limiting 80% had pain in more than one site, 45% had 4 or more sites of pain School of |Psychology & Centre for Pain Research

9. Work ability is affected by pain • Vast majority of the chronic pain sample was working fulltime – but 12% unable to work or working part time due to pain. • Those with chronic pain were over 3 times more likely to be unemployed. • Semi skilled workers were more than 3 times more likely than professionals to report chronic pain.

10. Depression and Pain. Proportion of people with clinically significant HADS Depression score (>10) Clinically significant depression nearly 5 times more common in chronic pain. Centre for Pain Research

11. Cost of Pain • Average cost per chronic pain patient €5,665 per year • Costs increased according to severity of pain. • Total cost estimated at €4.76 billion per year, 2.55% of Irish GDP in 2008. • Intensive users – average 4 inpatient admissions per year, 8 outpatient visits per year, 9 GP visits per year. • Small proportion of patients account for most of costs - 5% most expensive patients accounted for 26.4% of costs - average cost per patient €29,936 – hospital and wage replacement. Centre for Pain Research

12. Pain in vulnerable populations School of |Psychology & Centre for Pain Research

13. Q: Is pain only an adult health problem? Prevalence, Impact and Cost of Chronic Non-Cancer Pain in School-Aged Children: PRIME-C. Centre for Pain Research

14. Prevalence of Chronic Pain in 9-12 yr Olds 9%of 9-12 year olds report having chronic pain

15. Prevalence of Chronic Pain in 5-8 yr Olds (n=395) 7% of 5-8 yr olds report having chronic pain

16. KID Kindl Quality of Life Measures Comparing Children With and Without Pain 9-12 yr old children with pain obtain significantly lower scores on all the KID Kindl QOL Measures

17. KID Kindl Quality of Life Measures Comparing Children With and Without Pain 9-12 yr old children with pain obtain significantly lower scores on all the KID Kindl QOL Measures

18. The PAIN–ID Study The Prevalence and Impact of Chronic Pain in Adults with an Intellectual Disability Based on Carer Report (Walsh, Morrison, McGuire. Pain 2011, 152:1951-1957). Centre for Pain Research

19. Do people with ID have problems with pain? • IASP notes that pain also occurs in people unable to communicate verbally. Pain expressed differently in verbal vs non-verbal people. • Greater risk of experiencing pain: • Co-morbid conditions especially musculoskeletal • Increased accidental injury • Unhealthy lifestyle • Difficulty communicating pain and accessing treatment (Defrin et al., 2004; McGuire et al, 2007; Robertson et al, 2000; van Schrojenstein, 2000). • Pilot study – 13% - mild 2.5 more likely to have CP: possible under-recognition and under-treatment of pain in this group (McGuire et al, J Intell Disabil Res 2010) School Institute Name to go here

20. The extent of chronic pain • 15.4% (n=116) of the sample were reported to experience chronic pain with varying levels of severity • Pain was experienced for an average of 75 months / 6.3 years (SD = 92.8; Range = 3-468 months)

21. Do people with Down Syndrome experience pain differently? • People with DS have a higher pain threshold – i.e. takes longer to register pain. McGuire & Defrin 2015, Front Behav Neurosc. • BUT a higher sensitivity once pain is registered, i.e. people with DS have a more rapid summation of pain – once pain is registered will get more sore, more quickly. School Institute Name to go here

22. The features of pain in older adults • Affects >50% community and >70% residential • Pain is often multi-focal and multi-factorial • Common types: • Musculoskeletal • Internal organ • Neuropathic

23. Obstacles to getting effective pain management – (1) Not reported • Older adults may be less likely to report pain, because of : • cognitive impairment • stoicism or a desire not to be a burden on caregivers • belief that pain is a normal consequence of aging School of |Psychology & Centre for Pain Research

24. Obstacles to getting effective pain management – (2) Not asked about • Older adults may not be asked about their pain because: • Comorbidities are common, other health concerns may take priority • Health professionals less likely to ask older patients about pain • Pain may not look like pain (atypical especially in cog. impaired) • Pain assessment may be too difficult • Sensory loss • Cognitive impairment and other medical illnesses School of |Psychology & Centre for Pain Research

25. Obstacles to getting effective pain management – (3) Not treated • Health professionals less likely to offer treatments for pain or may manage pain differently in older patients. • Less likely to be given the same amount of analgesia as younger people in surgical settings • People >70 were less likely than younger patients to be recommended physiotherapy, exercise, or to be referred to a pain specialist or for CBT. School of |Psychology & Centre for Pain Research

26. Consequences of Untreated Pain in Elderly • It is estimated that 80% of nursing home residents have substantial pain that is undertreated • Untreated pain results in: • depression • decreased socialization • sleep disturbance • impaired ambulation • behavioral problems • AGS Panel on Chronic Pain in Older Persons, 1998

27. School of |Psychology & Centre for Pain Research

28. What can we do? Pain is highly prevalent Pain impacts quality of life Pain is expensive -> Need for interventions to reduce cost and reduce suffering Centre for Pain Research

29. Could we use online psychological therapies to manage chronic pain? Centre for Pain Research

30. Why Online Psychological Therapies? Scarce resource Waiting lists Physical symptoms that limit mobility Distance from a clinic / transportation requirements Cost constraints Choice Centre for Pain Research

31. What are e-Pain Technologies? e-Pain technologies can be divided into 3 main types: (1) Pain symptom diaries • Sensors and wearable devices for collecting real time data such as exercise data, sleep activity, and other physiological data • Online and app-based interventions for managing pain (primarily psychological and activity-focused treatments) School of Psychology

32. Symptom recording: Pain App for Children Centre for Pain Research

33. Sensors and biofeedback devices School Institute Name to go here

34. Are e-Interventions Effective for Pain Coping? • Web-based interventions show a clear trend of effectiveness, with stronger evidence emerging in more recent studies. • Two Cochrane reviews found evidence that Internet-based treatments reduced pain, disability, depression, and anxiety in adults and children. • There is an absence of evidence to yet recommend mobile app interventions (as opposed to evidence of a lack of effect). School of Psychology

35. Ongoing Challenges in the Development and Evaluation of E-pain Interventions • Limited capability for personalization of treatment. • Lack of involvement of health professionals in development and evaluation of technologies. • Insufficient foundation in current research or behavioural theories. • Lack of scientific evaluation through feasibility or effectiveness testing. • Are the interventions fit for purpose-safe and clinically effective? • What are the effective components? • What is the best format for delivery of the intervention (is therapist contact needed, how much, how often)? • Who benefits from the interventions? • Are they cost-effective? School of Psychology

36. Features of typical e-pain intervention model School of Psychology

37. Mindfulness and chronic pain Developing and pilot-testing Mindfulness in Action online intervention H Dowd, M Hogan, B McGuire, K Sarma, R Fish, A Zautra (Clinical Journal of Pain, 2015)

38. Mindfulness online. 126 participants with self-reported chronic pain were randomly assigned to each condition. Participants in both programmes reported significant improvement across a range of measures, including pain acceptance, pain catastrophising, pain interference, and ratings of pain at its worst and pain now, and global impressions of change. Also found unique benefits for the MIA programme, specifically, for ratings of pain intensity, ability to manage emotions, ability to deal with stressful situations, and ability to enjoy pleasant events. School of |Psychology & Centre for Pain Research

39. Adaptation of web-map School Institute Name to go here

40. Web-based Management of Adolescent Pain (Web-MAP) Web-MAP is an interactive and personalized CBT intervention for paediatric chronic pain that has shown promise in studies in US and Canada. Currently, there is no online intervention that focuses on pain management for adolescents and their parents in Ireland. In the context of the limited number of pain management services available for children and young people in Ireland, our objective is to evaluate the feasibility and outcomes of the Web-MAP programme within an Irish population and provide important information about the usability, acceptability, and preliminary data on efficacy of an online paediatric pain management intervention. School Institute Name to go here

41. Methodology Participants:20 adolescents and their parent(s). Inclusion criteria: 10-16 years, pain present for >3 months. Mixed design: • - Quantitative measures of pain will be taken at baseline and post-treatment. • - Qualitative data will be gathered at the end from post-treatment interviews to explore likes and dislikes about the programme Intervention: The Web-MAP programme has 8 modules in total to be completed by both child and parent each week. School Institute Name to go here

42. Results • Significant reductions in child pain intensity, pain interference, pain catastrophizing, activity limitations pre to post-treatment. • Parents showed significant reduction in protective behaviours pre to post-treatment. • Qualitative data revealed very positive feedback in relation to the usability and effectiveness of the programme, with both children and parents reporting high satisfaction ratings for the content and acceptability of the programme. • Next step: Full evaluation of effectiveness School Institute Name to go here

43. Adaptation of The PAIN COURSE School Institute Name to go here

44. OBJECTIVES Pilot study to generate an understanding of participants’ perceptions of the usability and acceptability of the Pain Course in a sample of adults with chronic pain, living in Ireland. To investigate the effectiveness of the intervention in a clinical trial. School of Psychology

45. Methods School of Psychology • Design : Two group, randomised controlled study. • Participants : Adults with self-reported chronic pain, registered at local hospital pain clinic. Assessments conducted via a screening telephone interview and online questionnaire. 133 people randomised to treatment or control. • Measures : • Acceptability and satisfaction assessed at post-treatment. • Clinical outcome data collected via administration of measures of mood (PHQ-9), andxiety (GAD-7), disability (RMDQ), pain intensity (WBPQ), pain interferrence (PIQ), pain self-efficacy (PSEQ-2), fear of movement because of pain (TSK), pain acceptance (CPAQ8); at pre-treatment, post-treatment, 3 month f-up. All administered online.

46. Methods Intervention: The Pain Course is an established online CBT pain management programme comprising : • Five core online lessons • Homework assignments • Additional resources and detailed case studies • Course components released sequentially over an 8-week period with weekly email and phone contact with a clinician • Contact to support participants work through Course and apply skills School of Psychology

47. Results • Mean Age 45 years (SD 11.34) • 106 female (49.6%) • 27 males (20.3%) • All lessons completed by 80% TG • 85% TG completed post treatment data • 99% CG completed post treatment data • Clinician contact per participant was 81.06 minutes • Significant differences on all outcome measures.

48. Means, SDs, and effect sizesMedium >.5Large >.8)

49. Feasibility and Pilot Testing of an Online Intervention for Post-Treatment Cancer Survivors Teresa Corbett, AnnMarie Groarke, Jane Walsh, Brian McGuire, Niamh Gethin.

50. Aim of Study • Design an on-line CBT intervention to enable self management of fatigue in post-treatment survivors • Pilot RCT to test feasibility and potential effectiveness of this intervention