Ampersand Health PSP Main Report

Pathway For Living Well With Chronic Pain & Fatigue in IBD - Main Report

Executive summary

● In a survey of 151 people, Ampersand found 87% have not received external support for their symptoms, yet it is widely sought after. Those who do seek help are likely to be recommended medical management (e.g. pain killers) or supplements, however, many still report ongoing symptoms impact their quality of life. ● The NICE guidelines for managing chronic pain (2021) suggest that Acceptance and Commitment therapy (ACT) should be considered in a management approach. The NICE guidelines for managing chronic fatigue (2021) recommend “older generation” Cognitive Behavioural (CBT) approaches. To our knowledge, there has not yet been a digitally-enabled, ACT-based app intervention to improve both chronic pain and fatigue in patients with IBD. ● Ampersand’s digitally delivered 8-week support programme included live and guided access to support from a Clinical Psychologist and Health Coach, peer support sessions and in-app Digital Therapeutics built from ACT based techniques and behavioural science. ● The group average of patients’ ACT survey scores significantly improved after completing the programme (n=21, p<0.0001). The results suggest that the programme helped the participants to build acceptance and psychological flexibility, understand more about their chronic symptoms, to feel less alone and that they can live a fulfilling life despite ongoing pain and fatigue.

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● Unmet needs (living with chronic symptoms) (4-9). ● Design of the support programme (10-14). ● Overview of 8 week support programme (15). ● Sample and demographics (16). ● Evaluation methods and measures (17-18). ● Results (19-21). ● Patient experience feedback (22-24). ● Conclusion (25). Contents

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Unmet Needs In The Patient Journey

Patients with long-term inflammatory conditions such as IBD face many different challenges. For example, lifestyle changes are more difficult to stick to, there is a greater need for emotional and practical support, and the side effects from medications can be quite significant. The clinical pathway provides care in a rational manner by carefully following medical protocols and biomedical approaches. However, there tends to be a lack of emotional, practical and holistic support, all of which contribute positively to the patient’s experience and quality of life.

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The experience of chronic symptoms (ongoing pain and fatigue) in IBD...

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Jane Doe Chronic pain is defined as pain that occurs consistently for 3 months or intermittently for 6 months. JOB ROLE, COMPANY Lorem ipsum dolor sit amet, consectetur adipiscing elit, sed do eiusmod tempor incididunt ut labore et dolore magna aliqua. Chronic fatigue can be described as an overwhelming sense of continuing tiredness, lack of energy, or feeling of exhaustion that is not relieved after rest or sleep.

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Jane Doe 76% of My IBD Care users say they experience pain and fatigue (at the same time) ‘Most of the time’ or ‘Sometimes’. JOB ROLE, COMPANY Lorem ipsum dolor sit amet, consectetur adipiscing elit, sed do eiusmod tempor incididunt ut labore et dolore magna aliqua. Fatigue is experienced by 44–86% of IBD individuals with active disease and up to 41% of individuals in remission. Chronic pain is experienced by up to 60% of those whose IBD is in remission.

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Support for chronic symptoms

Tools for building psychological wellbeing and guided self-management approaches to cope with ongoing chronic symptoms are sought after by patients. The NICE guidelines for managing chronic pain (2021) suggest that Acceptance and Commitment therapy (ACT) should be considered in a management approach. The NICE guidelines for managing chronic fatigue (2021) recommend “older generation” Cognitive Behavioural (CBT) approaches. To our knowledge, there has not yet been a digitally-enabled, ACT-based app intervention to improve both chronic pain and fatigue in patients with IBD.

In a survey of 151 people with IBD, we found 87% have not received external support for their chronic pain or fatigue.

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Upon literature review and Ampersand Health’s exploratory research with 151 patients, we identified the core needs of people living with chronic symptoms with an inflammatory condition.

An intervention to support those with chronic symptoms should include:

An explanation for chronic symptoms Advice on recognising chronic symptoms

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● Clinical Advice/ Pain and fatigue ‘counselling’ for the psychological impact based on an evidence-based approach (e.g. Acceptance and Commitment Therapy) ● Advice on what to do in their lifestyle to self-manage ● Acknowledgement and social support ● A supportive environment that facilitates change, built from experts in behaviour change (e.g. health coach) who can support the ongoing process of change and provide ongoing motivation ● Support on how to discuss symptoms and concerns with workplace/family/friends (Support for the people who support them/ their ‘care circle’)

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Applying Acceptance and Commitment Therapy Acceptance and Commitment Therapy (ACT) is a new behavioural therapeutic approach. It has evolved from Cognitive Behavioural Therapy. With ACT, the focus shifts from ‘fixing or changing’ negative experiences to the aim of ‘living’ with them. Upon collaboration with clinical psychologists Dr Peter Byrne and Dr Whitney Scott, it was clear that the ACT framework has had successful application when working with those with chronic pain and fatigue with IBD. As a BPS accredited practitioner of Acceptance and Commitment Therapy, the programme lead chose this framework as the core psychological framework of the intervention. ACT guidance and activities were delivered through the 14-day DTx course, two live online sessions with a Clinical Psychologist Dr Alexa Duff, two pre-recorded videos explaining further ACT techniques and Guidebook activities that prompted the use of ACT-based skills. Furthermore, participants had access to information and worksheets about ACT.

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Applying Behavioural Science

As a major part of the ACT model is taking committed action towards values, it was clear that behaviour change techniques would help the participants take action for themselves.

We used COM-B (Capability-Opportunity-Motivation model of behaviour) to carry out a behavioural diagnosis of ‘self-management of chronic symptoms’.

The main barriers that the PSP would focus on to ignite behaviour change were:

- psychological capability - social opportunity - automatic motivation

We used 25 Behaviour Change Techniques in the design and delivery of the programme.

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Expert leads of the programme

Dr Gareth Parkes is a Consultant Gastroenterologist at Barts Health NHS Trust. Gareth has been involved in research in a number of areas in IBD. In 2018, Dr Gareth Parkes co-founded Ampersand Health and developed My IBD Care alongside Dr Bu Hayee from Kings College Hospital and Nader Alaghband (Founder of Ampersand Health). Gareth is passionate about the use of technology in IBD to help patients self-manage their condition and live a healthy and happy life.

Dr Alexa Duff is a Clinical Psychologist within the Inflammatory Bowel Disease (IBD) team at Guy’s and St. Thomas’ hospitals, London. Alexa has been collaborating with the multi-disciplinary team at Guy’s and St.Thomas’ to identify and support psychological difficulties in patients with IBD. She works as part of a psychology network to highlight the need for integrated psychology within IBD teams. Clinically, Alexa supports patients with a wide range of difficulties associated with their IBD, often working from an Acceptance and Commitment Therapy (ACT) model. She is involved in a number of research projects exploring the use of ACT for those with IBD.

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Heather Savage is a dual certified Health and Life Coach. She is also a former Clinical Nurse Specialist in 3 different specialities, including inflammatory arthritis, inflammatory bowel disease and inflammatory skin conditions such as psoriasis and eczema. A Health Coach can help someone living with an inflammatory condition by helping them create changes in their life that are specific to their situation and circumstance. Having a support team is very important, and a Health Coach can help you on your journey of transformation to feel healthier in body and mind – ultimately leading you to a happier life. Heather has many years of coaching experience and a strong passion for helping others grow and transform their lives in positive ways.

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The Programme

8 Week Support Programme

DIGITAL GUIDEBOOK AND EMAILS The programme narrative, thinking exercises and ‘notes’ pages. Short videos from different subject matter experts Email updates with event links, educational resources tips to use the My IBD Care app




Recommended features, courses and singles to use in the app. 14 Day ACT course for Chronic Symptoms Short surveys to help us evaluate the programme

Four Recommended live events with experts in the field Four Optional live events, including two social meet-ups

Access to experts at live events by sending in questions during and between live sessions.

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The Sample

37 people took part in the support programme however only 21 completed the end of programme evaluation questionnaire.

Sample and demographics

Average time since diagnosis 9.29 years

Registered interest


Email and social media campaign yielded 219 entries, with 211 individual, complete entries using Google Forms

Provided informed consent


Out of 94 entries on our Google Forms consent form, 70 individuals accurately completed the form

Average age 39.5 years

Completed onboarding


To start the programme, 43 individuals completed onboarding by filling out questionnaires using the My IBD Care app

Withdrew from the programme


*General population roughly 60% female/40% male

For various reasons, 6 people requested to end their participation in the programme over the 8 week period.

Completed the final questionnaire Out of the 37 people who stayed in the programme, 21 members completed required questionnaires to be include in the final data analysis


© AMPERSAND HEALTH 2021 * Betteridge JD, Armbruster SP, Maydonovitch C, Veerappan GR. Inflammatory bowel disease prevalence by age, gender, race, and geographic location in the U.S. military health care population. Inflamm Bowel Dis. 2013 Jun;19(7):1421-7. doi: 10.1097/MIB.0b013e318281334d. PMID: 23518811.


Completion & Feedback

Programme Start

Programme Participation





Patient experience survey

Patient experience survey

ACT Survey - A non-validated five question survey where patients rate their level of agreement with statements relating to acceptance & commitment of chronic symptoms IBD-Control - measuring inflammatory bowel disease control from the patient’s perspective IBD-F - Inflammatory Bowel Disease-Fatigue Self-assessment Scale CBGS - Chronic Pain Grade Scale

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Main Outcome Measure

ACT Survey

A non-validated, five-question survey where patients rate their level of agreement with statements relating to psychological flexibility

1. I feel alone when dealing with the chronic symptoms related to my condition (social)

acceptance of chronic symptoms and commitment towards valued action .

2. I know how to cope with my chronic symptoms (Education)

Inspired by the validated ACT-based PROM - Chronic Pain Acceptance Questionnaire (CPAQ). Adapted to include mention of other chronic symptoms and to reflect the intended psychological and behavioural outcomes of the Ampersand intervention . Created by BPS accredited practitioner of ACT framework.

3. I feel that I can make room for the experience of chronic symptoms in my life (Acceptance - willingness to live with symptoms) 4. My chronic symptoms prevent me from doing what matters to me ( Acceptance - Value driven action/doing what matters) 5. I am confident that I can cope with my chronic symptoms, even when things get tough (Resilience)

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Highly significant change in ACT score

IBD patients greatly improved their acceptance of chronic symptoms Patients’ ACT survey scores significantly improved after completing the 8-week programme. These findings indicate that patients’ psychological flexibility, acceptance of chronic symptoms and commitment towards valued action had drastically increased.




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Those who ‘dropped out’ of the programme, didn’t need the ACT intervention

Those who dropped out likely had less need for ACT guidance/intervention as they had a higher ACT score at the start of the programme.

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IBD-Control scores did not statistically change over the 8-weeks. This result suggests that disease control remained consistent throughout programme.

Scores on both the CPGS & IBD-F did not statistically change over the 8-week programme. These results indicate that physical levels of chronic pain and fatigue did not change, as expected. However, self-reported impact suggests that perception of symptoms changed as a result of taking part in the programme.

We also detected no difference in scores before the programme for people who completed the programme vs those who dropped out.


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Self-reported impact of the programme

88% enjoyed and found value in the programme.

94% learned something new from the programme.

31.3% reported that they felt that the physical nature of their chronic symptoms had improved.

The majority participants who completed the final survey indicated that the programme helped them make changes in their lives.

Example responses include: ●

Having the structure of the course has allowed me to review my daily routines. Focussing on ACT and Mindfulness has helped. Although I have still experienced pain and discomfort, during this course - I have changed the way I deal with it. I have reduced my reliance on painkillers over the eight weeks of the course. ● Change the way I deal with my symptoms and how I accept it rather than fight against it. ● I have an improved attitude towards my health and feel better prepared to deal with it. ● The programme helped me find new ways to let go of the anxiety and accept my situation. It didn't take away my symptoms, but I felt better able to cope. ● Trying to be more mindful with a new perspective.

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The ACT tools and techniques shared on the course and programme were well received. Many people identified live online sessions as being their main highlight. Furthermore, many enjoyed the fact that they were able to experience the programme with others who were facing similar challenges as themselves. ● I have a better understanding of IBD from this programme, and I liked the regular structure of the programme. ● I found the Care Circle webinar very informative and have made some personal changes as a direct result of that session. ● Listening to the experts, and personal experiences of others were very helpful. ● This programme has made me realise there are other ways to cope with pain and discomfort. The use of ACT and revisiting Mindfulness has given me a fresh outlook and changed my daily routine for the better. ● The activities on the ACT course on the app, they were short, interactive and provided tools to help manage chronic fatigue. ● I loved the ACT course: so many great tips and ways to support mental health. ● The programme and ACT course helped re-focus self-management approaches. Now using ACT, mindfulness and more exercise. Less reliance and use of pain medication

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‘How likely are you to recommend this programme to someone else living with IBD?’

Programme NPS = 38

Generally, a score above a score of 20 is favourable and above 50, excellent.

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Concluding Remarks

The 8-week programme did significantly impact the ACT survey scores recorded before and after the programme (n=21, p<0.0001). The p-value observed is very small meaning meaning we can say with high confidence that the change in scores on the group ACT scores over the 8 weeks was robust, however our sample size has associated limitations. Overall, the group score improved on factors that influence somebody’s ability to cope with their chronic symptoms and live a life that brings them more fulfilment.

The score improvement indicates that the programme successfully helped the participants to feel less alone, understand more about their chronic symptoms, build acceptance and confidently feel as though they can live a fulfilling life despite their chronic symptoms. Early findings from secondary analysis shows that the programme may have worked best for those who were relatively newly diagnosed, compared to those who have been diagnosed for many years.

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Lorem ipsum dolor sit amet, consectetur adipiscing elit, sed do eiusmod tempor incididunt ut labore et dolore magna aliqua. ‘ This has been a good process and I’d personally like to carry on with the webinars’ ‘I find it encouraging to be on things like this, not feeling alone is a big deal’ ‘Made me feel like I can look elsewhere other than medication for my pain, now I can look at it more holistically. After 28 years of living with UC, this programme made me feel more positive about being able to manage’

Jane Doe

JOB ROLE, COMPANY ‘This programme gives me something other than thinking I'm unwell.’

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Authors: Rachel Moran, Nanna Asgeirsdottir & Aahuti Rai Special thanks and contributions: Dr Alexa Duff, Heather Savage, Dr Gareth Parkes, Sarah Khalid, Freyja Rigler, Anisha Gangotra, Ampersand Patient Voices & Royal London Hospital Patient Panel

0207 112 7100 PHONE EMAIL

121 Salusbury Rd, London NW6 6RG WHERE WE ARE


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