Centre for Academic Child Health, University of Bristol, Bristol, UK.
Paediatric CFS/ME Service, Royal United Hospital Bath NHS Trust, Bath, UK.
BMJ Paediatr Open. 2021 Oct 1;5(1):e001139. doi: 10.1136/bmjpo-2021-001139. eCollection 2021.
Paediatric chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is disabling and relatively common. Although evidenced-based treatments are available, at least 15% of children remain symptomatic after one year of treatment. Acceptance and commitment therapy (ACT) is an alternative therapy option; however, little is known about whether it is an acceptable treatment approach. Our aim was to find out if adolescents who remain symptomatic with CFS/ME after 12 months of treatment would find ACT acceptable, to inform a randomised controlled trial (RCT) of ACT.
We recruited adolescents (diagnosed with CFS/ME; not recovered after one year of treatment; aged 11-17 years), their parent/carer and healthcare professionals (HCPs) from one specialist UK paediatric CFS/ME service. We conducted semi-structured interviews to explore barriers to recovery; views on current treatments; acceptability of ACT; and feasibility of an effectiveness RCT. Thematic analysis was used to identify patterns in data.
Twelve adolescents, eleven parents and seven HCPs were interviewed. All participants thought ACT was acceptable. Participants identified reasons why ACT might be efficacious: pragmatism, acceptance and compassion are valued in chronic illness; values-focussed treatment provides motivation and direction; psychological and physical needs are addressed; normalising difficulties is a useful life-skill. Some adolescents preferred ACT to cognitive behavioural therapy as it encouraged accepting (rather than challenging) thoughts. Most adolescents would consent to an RCT of ACT but a barrier to recruitment was reluctance to randomisation. All HCPs deemed ACT feasible to deliver. Some were concerned patients might confuse 'acceptance' with 'giving up' and called for clear explanations. All participants thought the timing of ACT should be individualised.
All adolescents with CFS/ME, parents and HCPs thought ACT was acceptable, and most adolescents were willing to try ACT. An RCT needs to solve issues around randomisation and timing of the intervention.
儿科慢性疲劳综合征/肌痛性脑脊髓炎(CFS/ME)会导致残疾,且较为常见。尽管有循证治疗方法,但至少有 15%的儿童在治疗一年后仍有症状。接受和承诺疗法(ACT)是一种替代治疗方法;然而,对于它是否是一种可接受的治疗方法知之甚少。我们的目的是了解在接受治疗 12 个月后仍有 CFS/ME 症状的青少年是否会接受 ACT,为 ACT 的随机对照试验(RCT)提供信息。
我们从一家英国儿科 CFS/ME 专科服务机构招募了青少年(被诊断为 CFS/ME;治疗一年后未康复;年龄在 11-17 岁)、他们的父母/照顾者和医疗保健专业人员(HCPs)。我们进行了半结构化访谈,以探讨康复障碍;对当前治疗方法的看法;ACT 的可接受性;以及有效性 RCT 的可行性。使用主题分析来识别数据中的模式。
共对 12 名青少年、11 名家长和 7 名 HCPs 进行了访谈。所有参与者都认为 ACT 是可以接受的。参与者确定了 ACT 可能有效的原因:在慢性疾病中,实用主义、接受和同情是有价值的;以价值观为中心的治疗提供了动力和方向;解决了心理和身体需求;使困难正常化是一项有用的生活技能。一些青少年更喜欢 ACT 而不是认知行为疗法,因为它鼓励接受(而不是挑战)想法。大多数青少年会同意接受 ACT 的 RCT,但招募的一个障碍是不愿意随机化。所有 HCPs 认为 ACT 可行。一些人担心患者可能会将“接受”与“放弃”混淆,并呼吁进行清晰的解释。所有参与者都认为 ACT 的时间应该个体化。
所有 CFS/ME 青少年、家长和 HCPs 都认为 ACT 是可以接受的,大多数青少年都愿意尝试 ACT。RCT 需要解决随机化和干预时间的问题。