Approaches to improving mental health care for autistic children and young people: a systematic review and meta-analysis.

Autistic children and young people (CYP) experience mental health difficulties but face many barriers to accessing and benefiting from mental health care. There is a need to explore strategies in mental health care for autistic CYP to guide clinical practice and future research and support their mental health needs. Our aim was to identify strategies used to improve mental health care for autistic CYP and examine evidence on their acceptability, feasibility, and effectiveness. A systematic review and meta-analysis were carried out. All study designs reporting acceptability/feasibility outcomes and empirical quantitative studies reporting effectiveness outcomes for strategies tested within mental health care were eligible. We conducted a narrative synthesis and separate meta-analyses by informant (self, parent, and clinician). Fifty-seven papers were included, with most investigating cognitive behavioral therapy (CBT)-based interventions for anxiety and several exploring service-level strategies, such as autism screening tools, clinician training, and adaptations regarding organization of services. Most papers described caregiver involvement in therapy and reported adaptations to communication and intervention content; a few reported environmental adjustments. In the meta-analyses, parent- and clinician-reported outcomes, but not self-reported outcomes, showed with moderate certainty that CBT for anxiety was an effective treatment compared to any comparison condition in reducing anxiety symptoms in autistic individuals. The certainty of evidence for effectiveness, synthesized narratively, ranged from low to moderate. Evidence for feasibility and acceptability tended to be positive. Many identified strategies are simple, reasonable adjustments that can be implemented in services to enhance mental health care for autistic individuals. Notable research gaps persist, however.

Protesting for public health: a case for medical activism during the climate crisis.

Anthropogenic climate change and its sequelae are de-stabilizing our environmental, social, economical and political systems. Not surprisingly, the direct and indirect effects of disrupting these key determinants of health are profoundly detrimental to mental health and wellbeing. Psychiatrists feel compelled to speak out. However, decades of gentle persuasion have failed to invoke sufficient government action so many have turned to activism. Others doubt whether this is, or should be, within their scope of practice. In this article we present the case for medical activism. History has shown prominent activist medics and psychiatrists have been instrumental in creating social and cultural change. We propose that psychiatrists are well-placed to advocate for health issues that cross socio-politico-environmental boundaries. We suggest that, not only do we have a moral imperative to act for the wider determinants of health, but we are also advantageously positioned as trusted professionals with the necessary skills to articulate the problem and advocate for the most vulnerable in society. We call on our training and regulatory bodies to support health activism.

The importance of school in the management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): issues identified by adolescents and their families.

Paediatric Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) is a disabling condition. Schools play a key role in adolescents' experiences with managing ME/CFS. However, little is known about the experiences of adolescents with ME/CFS (and their families) in schools. This paper is an incidental qualitative study, which combines data from two independent ME/CFS studies: study 1 researched ethnic minority adolescents with ME/CFS; study 2 explored Acceptance and Commitment Therapy for adolescents with ME/CFS who had not recovered after one year. Participants included: adolescents with ME/CFS; their families; and medical professionals (ME/CFS specialists and non-specialists). Adolescents, their families, and ME/CFS medical professionals were recruited from a UK specialist paediatric ME/CFS service. Non-ME/CFS medical professionals were recruited from the same region. Semi-structured qualitative interviews and focus groups were undertaken. Participants' views on schools from each study were combined and thematic analysis was used to identify themes. Fifteen adolescents with ME/CFS (11-17 years old), sixteen family members, and ten medical professionals (GPs, school nurses and ME/CFS specialists) were interviewed. Four key themes were found: (1) adolescents identified school was important for aiding ME/CFS recovery, especially educationally and socially; (2) families described varying levels of support from schools and local authorities with help managing ME/CFS - some described significant practical and emotional difficulties to accessing education, whereas others recounted examples of positive supportive strategies, particularly when teachers had previous experience or knowledge of ME/CFS; (3) parents thought three-way communication between schools, healthcare and families could improve support; (4) participants felt schools were an appropriate place for knowledge building and raising awareness of ME/CFS amongst teachers and pupils, to aid improved supportive measures. In conclusion, this paper provides rich data that highlights the importance of education and the realistic fears and hurdles for adolescents with ME/CFS remaining engaged in education and the impact on their future. Some families described positive strategies in school, which were viewed as helpful to manage ME/CFS in the classroom. These strategies could be implemented alongside knowledge building initiatives and improved communication between healthcare and education. There is a need to further investigate useful strategies and determine how teachers can be best supported in implementing them.

What treatments work for anxiety and depression in children and adolescents with chronic fatigue syndrome? An updated systematic review.

OBJECTIVES: Children with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) experience a higher prevalence of depression and anxiety compared with age-matched controls. Our previous systematic reviews in 2015/16 found little evidence for effective treatment for children with CFS/ME with comorbid depression and/or anxiety. This review updates these findings. DESIGN: A systematic review. We searched Cochrane library, Medline, Embase and PsycINFO databases from 2015 to 2020. We combined the updated results with our previous reviews in a narrative synthesis. PARTICIPANTS: Inclusion criteria: <18 years old; diagnosed with CFS/ME (using Centers for Disease Control and Prevention, National Institute for Health and Care Excellence or Oxford criteria); validated measures of depression and/or anxiety. INTERVENTIONS: Observational studies or randomised controlled trials. COMPARISON: Any or none. OUTCOMES: Studies with outcome measures of anxiety, depression or fatigue. RESULTS: The updated review identified two studies. This brings the total number of paediatric CFS/ME studies with a measure of anxiety and/or depression since 1991 to 16. None of the studies specifically targeted depression, nor anxiety. One new study showed the Lightning Process (in addition to specialist care) was more effective at reducing depressive and anxiety symptoms compared with specialist care alone. Previous studies evaluated cognitive-behavioural therapy (CBT); pharmacological interventions and behavioural approaches. CBT-type interventions had most evidence for improving comorbid anxiety and/or depressive symptoms but varied in delivery and modality. Other interventions showed promise but studies were small and have not been replicated. CONCLUSION: Very few paediatric CFS/ME intervention studies have been conducted. This review update does not significantly add to what is known from previous reviews. The evidence is of poor quality and insufficient to conclude which interventions are effective at treating comorbid anxiety and/or depression in paediatric CFS/ME. PROSPERO REGISTRATION NUMBERS: CRD42016043488 and CRD42015016813.

Qualitative study of the acceptability and feasibility of acceptance and commitment therapy for adolescents with chronic fatigue syndrome.

Background: 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. Methods: 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. Results: 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. Conclusions: 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.

Sustainability in Quality Improvement (SusQI): challenges and strategies for translating undergraduate learning into clinical practice.

BACKGROUND: The healthcare sector is a major contributor to climate change and there are international calls to mitigate environmental degradation through more sustainable forms of clinical care. The UK healthcare sector has committed to net zero carbon by 2040 and sustainable healthcare is a nationally mandated outcome for all UK graduating doctors who must demonstrate their ability to address social, economic, and environmental challenges. Bristol Medical School piloted successful Sustainability in Quality Improvement (SusQI) workshop, but identified challenges translating classroom learning into clinical practice. This paper aims to identify and address those challenges. METHODS: We conducted five focus groups that identified and iteratively explored barriers and facilitators to practice among medical students, comparing a range of experiences to generate a conceptual model. We then combined our findings with behaviour change theory to generate educational recommendations. RESULTS: Students that applied their learning to the clinical workplace were internally motivated and self-determined but needed time and opportunity to complete projects. Other students were cautious of disrupting established hierarchies and practices or frustrated by institutional inertia. These barriers impacted on their confidence in suggesting or achieving change. A minority saw sustainable healthcare as beyond their professional role. CONCLUSIONS: We present a series of theoretically informed recommendations. These include wider curricular engagement with concepts of sustainable clinical practice; supportive workplace enablement strategies such as workplace champions and co-creation of improvement goals; and time and headspace for students to engage through structured opportunities for credit-bearing project work.

Sustainability in quality improvement (SusQI): a case-study in undergraduate medical education.

BACKGROUND: There is a pressing need for more sustainable healthcare. UK medical graduates are required to apply social, economic, and environmental principles of sustainability to their practice. The Centre for Sustainable Healthcare has developed a sustainability in quality improvement (SusQI) framework and educator's toolkit to address these challenges. We aimed to develop and evaluate SusQI teaching using this toolkit at Bristol Medical School. METHODS: We facilitated a SusQI workshop for all third-year Bristol Medical School students. We used mixed methods including questionnaires, exit interviews and follow-up focus groups to evaluate the outcomes and processes of learning. RESULTS: Students reported: improvements in knowledge, confidence, and attitudes in both sustainable healthcare and quality improvement; increased self-rated likelihood to engage in SusQI projects; and willingness to change practices to reduce environmental impact in their healthcare roles. Factors for successful teaching included: interactivity; collaboration and participation; and real-life, relevant and tangible examples of projects delivered by credible role models. CONCLUSIONS: Students reported that SusQI education supported by the toolkit was effective at building knowledge and skills, and reframed their thinking on sustainability in quality improvement. Combining the two topics provided enhanced motivation for and engagement in both. Further research is needed on the clinical impacts of SusQI learning.

Recovery from chronic fatigue syndrome: a systematic review-heterogeneity of definition limits study comparison.

BACKGROUND: Paediatric chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is a common illness with a major impact on quality of life. Recovery is poorly understood. Our aim was to describe definitions of recovery in paediatric CFS/ME, the rate of recovery and the time to recovery. METHODS: This systematic review included a detailed search of MEDLINE, EMBASE, PsycInfo and Cochrane Library between 1994 and July 2018. Inclusion criteria were (1) clinical trials and observational studies, (2) participants aged <19 years with CFS/ME, (3) conducted in Western Healthcare systems and (4) studies including a measure of recovery and time taken to recover. RESULTS: Twelve papers (10 studies) were identified, involving 826 patients (range 23-135). Recovery rates were highly varied, ranging between 4.5% and 83%.Eleven distinct definitions of recovery were used; six were composite outcomes while five used unidimensional outcomes. Outcome measures used to define recovery were highly heterogeneous. School attendance (n=8), fatigue (n=6) and physical functioning (n=4) were the most common outcomes included in definition of recovery. Only five definitions included a personal measure of recovery. IMPLICATIONS: Definitions of recovery are highly variable, likely secondary to differences in study design, outcomes used, follow-up and study populations. Heterogeneous definitions of recovery limit meaningful comparison between studies, highlighting the need for a consensus definition going forward. Recovery is probably best defined from the child's own perspective with a single self-reported measure. If composite measures are used for research, there should be agreement on the core outcome set used.

Enhanced Invitations Using the Question-Behavior Effect and Financial Incentives to Promote Health Check Uptake in Primary Care.

Background: Uptake of health checks for cardiovascular risk assessment in primary care in England is lower than anticipated. The question-behavior effect (QBE) may offer a simple, scalable intervention to increase health check uptake. Purpose: The present study aimed to evaluate the effectiveness of enhanced invitation methods employing the QBE, with or without a financial incentive to return the questionnaire, at increasing uptake of health checks. Methods: We conducted a three-arm randomized trial including all patients at 18 general practices in two London boroughs, who were invited for health checks from July 2013 to December 2014. Participants were randomized to three trial arms: (i) Standard health check invitation letter only; (ii) QBE questionnaire followed by standard invitation letter; or (iii) QBE questionnaire with offer of a financial incentive to return the questionnaire, followed by standard invitation letter. In intention to treat analysis, the primary outcome of completion of health check within 6 months of invitation, was evaluated using a p value of .0167 for significance. Results: 12,459 participants were randomized. Health check uptake was evaluated for 12,052 (97%) with outcome data collected. Health check uptake within 6 months of invitation was: standard invitation, 590 / 4,095 (14.41%); QBE questionnaire, 630 / 3,988 (15.80%); QBE questionnaire and financial incentive, 629 / 3,969 (15.85%). Difference following QBE questionnaire, 1.43% (95% confidence interval -0.12 to 2.97%, p = .070); following QBE questionnaire and financial incentive, 1.52% (-0.03 to 3.07%, p = .054). Conclusions: Uptake of health checks following a standard invitation was low and not significantly increased through enhanced invitation methods using the QBE.

Enhanced invitation methods and uptake of health checks in primary care: randomised controlled trial and cohort study using electronic health records.

BACKGROUND: A national programme of health checks to identify risk of cardiovascular disease (CVD) is being rolled out but is encountering difficulties because of low uptake. OBJECTIVE: To evaluate the effectiveness of an enhanced invitation method using the question-behaviour effect (QBE), with or without the offer of a financial incentive to return the QBE questionnaire, at increasing the uptake of health checks. The research went on to evaluate the reasons for the low uptake of invitations and compare the case mix for invited and opportunistic health checks. DESIGN: Three-arm randomised trial and cohort study. PARTICIPANTS: All participants invited for a health check from 18 general practices. Individual participants were randomised. INTERVENTIONS: (1) Standard health check invitation only; (2) QBE questionnaire followed by a standard invitation; and (3) QBE questionnaire with offer of a financial incentive to return the questionnaire, followed by a standard invitation. MAIN OUTCOME MEASURES: The primary outcome was completion of the health check within 6 months of invitation. A p-value of 0.0167 was used for significance. In the cohort study of all health checks completed during the study period, the case mix was compared for participants responding to invitations and those receiving 'opportunistic' health checks. Participants were not aware that several types of invitation were in use. The research team were blind to trial arm allocation at outcome data extraction. RESULTS: In total, 12,459 participants were included in the trial and health check uptake was evaluated for 12,052 participants for whom outcome data were collected. Health check uptake was as follows: standard invitation, 590 out of 4095 (14.41%); QBE questionnaire, 630 out of 3988 (15.80%); QBE questionnaire and financial incentive, 629 out of 3969 (15.85%). The increase in uptake associated with the QBE questionnaire was 1.43% [95% confidence interval (CI) -0.12% to 2.97%; p = 0.070] and the increase in uptake associated with the QBE questionnaire and offer of financial incentive was 1.52% (95% CI -0.03% to 3.07%; p = 0.054). The difference in uptake associated with the offer of an incentive to return the QBE questionnaire was -0.01% (95% CI -1.59% to 1.58%; p = 0.995). During the study period, 58% of health check cardiovascular risk assessments did not follow a trial invitation. People who received an 'opportunistic' health check had greater odds of a ≥ 10% CVD risk than those who received an invited health check (adjusted odds ratio 1.70, 95% CI 1.45 to 1.99; p < 0.001). CONCLUSIONS: Uptake of a health check following an invitation letter is low and is not increased through an enhanced invitation method using the QBE. The offer of a £5 incentive did not increase the rate of return of the QBE questionnaire. A high proportion of all health checks are performed opportunistically and not in response to a standard invitation letter. Participants receiving opportunistic checks are at higher risk of CVD than those responding to standard invitations. Future research should aim to increase the accessibility of preventative medical interventions to increase uptake. Research should also explore the wider use of electronic health records in delivering efficient trials. TRIAL REGISTRATION: Current Controlled Trials ISRCTN42856343. FUNDING: This project was funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 20, No. 84. See the NIHR Journals Library website for further project information.