Evaluation of a survey exploring the experiences of [people...] participated in CBT and GET..., 2019, OXCATTS

Evaluation of a survey exploring the experiences of adults and children with ME/CFS who have participated in CBT and GET interventional programmes

https://www.meaction.net/wp-content...d-GET-Oxford-Brookes-Full-Report-03.04.19.pdf

FINAL REPORT
Submitted by Oxford Clinical Allied Technology and Trials Services Unit (OxCATTS), Oxford Brookes University, 27th February 2019
(Submitted to NICE as part of the 2021 Guideline development process)

1. Executive Summary

In total 2,274 responses were received for the survey. The majority of (87%) responses were self- reported, with (62.4%, 1419 people) reporting their condition was moderate before treatment. In this survey, individuals were asked if they started cognitive behaviour therapy (CBT), graded exercise therapy (GET), or both CBT and GET treatment courses. Where they reported combined treatment, they were asked to comment on CBT and GET components separately. Approximately 35% were offered CBT, 23.8% GET and 41.5% combined CBT and GET.

Overall, respondents to the survey who started CBT alone or as a component of CBT/GET were more likely to complete the course than those who started GET alone. Those who ceased CBT alone or in combination with GET most commonly cited being too ill to continue and/or the practitioner recommending cessation of treatment. For GET the most common reason for stopping treatment was worsening symptoms.

The impact of treatment was evaluated through patient-reported improvement or deterioration of physical and mental health following treatment. For participants receiving CBT alone or combined with GET, approximately 70% of respondents reported completing the course. With CBT on its own, approximately seventy nine percent of participants reported either no change (53%) or deterioration (26.4%) in physical health after CBT treatment, whereas 41.5% reported an improvement in mental health with 55% reporting no improvement (28.1%) or deterioration (26.9%). Overall, responders reported that CBT was more helpful than harmful for mental health outcomes.

With GET on its own, the majority of responders reported not completing the course (61%), of those that started the course 81% reporting worsening of symptoms. Approximately seventy nine percent of people reported no improvement (11.7%) or deterioration (67.1%) in physical health. Seventy nine percent of people reported that GET led to no change (25.5%) or worsening (53% ) of mental health after GET.

When reporting on the CBT component of a combined CBT/GET course responders predominantly (84%) reported no effect (48.4) or worsening (35.5%) of physical health with 67% reported no effect (32.7%) or worsening (34.4%) of mental health. Responders were also asked whether any symptoms had worsened with CBT in combination with GET. Over half of responders (58.3%) reported that CBT, when undertaken with GET, worsened their symptoms. CBT when combined with GET appears to have a less positive effect than when delivered on its own.

When reporting on the GET component of a combined CBT/GET course, 48.4% completed the course with approximately 87% reporting no effect (11.2%) or deterioration (75%) in physical health, and 87% reporting no effect (24.3%) or deterioration (62.9%) in mental health. Eighty six percent of responders reported that GET, when combined with CBT, had worsened their symptoms.

The effect of treatment was further evaluated through reported ability to resume or carry out employment or education, as well as a reported effect on claiming Department of Work and
Pensions (DWP) benefits. For both treatments, whether alone or combined most respondents (78.8% or more) reported the treatment did not affect their claiming DWP benefits.

CBT alone did not affect returning to work or school for most individuals, 77% of respondents reported no change, 21.8% reported a change. However, GET alone and CBT and GET treatments in combination had more of an effect on the ability to return to work or school, with a range of 44.4- 47.2% of respondents reporting a change.

In summary, the majority of individuals reported deterioration or no change in symptoms and health over the course of all treatment approaches.