Tag: children

What treatments work for anxiety and depression in children and adolescents with Chronic Fatigue Syndrome? An updated systematic review

Abstract:

Objectives: Children with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) experience a higher prevalence of depression and anxiety compared to 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 PsychINFO databases from 2015-2020. We combined the updated results with our previous reviews in a narrative synthesis.

Participants: Inclusion criteria: <18 years old; diagnosed with CFS/ME (using Centre for Disease Control, 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 to 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.

Source:Clery, P., Royston , A., Driver, K., Bailey, J., Crawley, E. M., & Loades, M. (Accepted/In press). What treatments work for anxiety and depression in children and adolescents with Chronic Fatigue Syndrome? An updated systematic review. BMJ Open. https://research-information.bris.ac.uk/en/publications/what-treatments-work-for-anxiety-and-depression-in-children-and-a

Experiences Among School Personnel and School Nurses on Educational Adaptations for Students With CFS/ME: A Qualitative Interview Study

Abstract:

Introduction: Chronic fatigue syndrome (CFS/ME) is a disabling disease severely impacting school attendance, education, and social life in young students. Uncertainties surrounding CFS/ME etiology may impact the interpretation of CFS/ME in schools. Thus, school personnel need information from health care providers to make adequate adaptations to education and social life at school for these students.

Objectives: To explore teachers, counselors, and school nurses’ experiences with adapting education for students with CFS/ME aged 13-19 in secondary and high schools.

Design: A qualitative study with focus group interviews and individual interviews performed face-to-face or digitally between November 2020 and March 2021. Data were analyzed using Systematic text condensation.

Participants: Six teachers, two counselors, and four school nurses in secondary and high school participated.

Results: Adapting education for students with CFS/ME was challenging, especially before the students received a diagnosis. The challenges were related to identifying the students’ adaptational needs, maintaining a teacher-student relationship due to school absence, difficulties in maintaining continuity of education, and uncertainty regarding the diagnosis. Successful adaptations were related to quickly reacting to school absence, early referral to educational, psychological services, a close collaboration with the school management, and the development of digital teaching for students with CFS/ME. Interdisciplinary collaboration and a clear, constructive plan with adaptive measures, including maintained teacher-student communication and educational and social adaptations, may be useful in preventing the losses, young people, with CFS/ME experience.

Conclusion: Early interdisciplinary collaboration to adapt education and social life at school for students with CFS/ME, may support teachers, counselors, and school nurses in their efforts to adapt education and prevent losses related to academic and social development in students with CFS/ME.

Source: Similä WA, Rø TB, Nøst TH. Experiences Among School Personnel and School Nurses on Educational Adaptations for Students With CFS/ME: A Qualitative Interview Study. Front Pediatr. 2021 Nov 11;9:756963. doi: 10.3389/fped.2021.756963. PMID: 34858906; PMCID: PMC8632258.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8632258/ (Full study)

Parent-child discrepancies in health-related quality of life of children and adolescents with myalgic encephalomyelitis/chronic fatigue syndrome

Abstract:

Purpose: Few studies have examined parent-child discrepancies on self-report measures of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) symptomatology and health-related quality of life (HRQOL). The aim of this study was to investigate parent-child reporting discrepancies between a pediatric sample of diagnosed patients with ME/CFS and controls to better understand the role of children and adolescent reporting.

Method: Data for this study were drawn from a community-based epidemiological study of pediatric ME/CFS in the Chicagoland area. A total of 147 parent-child dyads (75 pairs with ME/CFS and 72 control pairs) completed measures assessing HRQOL and ME/CFS symptomatology. At the individual level, agreement was assessed using intra-class correlation coefficient (ICC) scores. Agreement was measured at the group level by a comparison of means using paired-sample t-tests.

Results: Intra-class correlations revealed varied agreement in both parent-child pairs of children who met at least one case definition of ME/CFS and in parent-child pairs in the control group.

Conclusion: The current study provides support for the existence of discrepancies between parent-child reports of ME/CFS symptomatology and HRQOL measures. Limitations and future directions are discussed.

Source: Ekberg KM, Torres C, Jason LA. Parent-child discrepancies in health-related quality of life of children and adolescents with myalgic encephalomyelitis/chronic fatigue syndrome. Qual Life Res. 2021 Jun 30. doi: 10.1007/s11136-021-02919-w. Epub ahead of print. PMID: 34191221. https://pubmed.ncbi.nlm.nih.gov/34191221/

The Impact of Severe ME/CFS on Student Learning and K-12 Educational Limitations

Abstract:

Children with ME/CFS who are severely ill are bedbound and homebound, and oftentimes also wheelchair-dependent. Very seriously affected children are often too sick for doctor’s office visits, let alone school attendance. The most recent data estimate that 2-5% of children may be severely affected or bedridden. However, there is no recent research that confirms these numbers. The severely ill receive little help from their schools, and are socially isolated. This article outlines several suggestions for the type of education that students with ME/CFS should be receiving and develops a preliminary sketch of the web of resources and emergent techniques necessary to achieve these outcomes.

Source: Newton FR. The Impact of Severe ME/CFS on Student Learning and K-12 Educational Limitations. Healthcare (Basel). 2021 May 25;9(6):627. doi: 10.3390/healthcare9060627. PMID: 34070286. https://pubmed.ncbi.nlm.nih.gov/34070286/

Virtual Consultations: Young People and Their Parents’ Experience

Abstract:

Purpose: Evaluate the experience of virtual consultations for young people and their families and assess whether young people are being offered a confidential space as part of these virtual encounters.

Patients and methods: An anonymous online survey was sent to young people age 10-18 y.o. who had experienced at least one virtual consultation with an adolescent medicine tertiary service in the United Kingdom between March 13th and June 13th 2020 mostly associated with, but not exclusively, management of chronic fatigue syndrome or medically unexplained symptoms. Responses from the survey were analysed by two authors who independently coded the common themes reported by the participants.

Results: Fifty young people and their families participated in the survey. Eighty-eight percent reported feeling prepared for virtual appointments, 90% found them helpful, 88% felt that they were private and 86% reported they would find further virtual appointments helpful. Positive impacts reported were no need to travel (38%) and the continuity of care (36%). Many of our participants reported no negative impact (39%) and felt that nothing needed to be improved (56%). The most frequent improvement reported was the provision of a quality video call (34%). Only 36% of young people had the opportunity to speak in confidence to the health care provider without their parents’ presence.

Conclusion: Virtual appointments are perceived as safe and helpful by the young people and their families. Professionals should offer a confidential remote space for young people to speak without their parents.

Source: Proulx-Cabana S, Segal TY, Gregorowski A, Hargreaves D, Flannery H. Virtual Consultations: Young People and Their Parents’ Experience. Adolesc Health Med Ther. 2021 Apr 28;12:37-43. doi: 10.2147/AHMT.S292977. PMID: 33953629; PMCID: PMC8088977. https://pubmed.ncbi.nlm.nih.gov/33953629/

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

Abstract:

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.

Source: Moore Y, Serafimova T, Anderson N, King H, Richards A, Brigden A, Sinai P, Higgins J, Ascough C, Clery P, Crawley EM. Recovery from chronic fatigue syndrome: a systematic review-heterogeneity of definition limits study comparison. Arch Dis Child. 2021 Apr 12:archdischild-2020-320196. doi: 10.1136/archdischild-2020-320196. Epub ahead of print. PMID: 33846138. https://pubmed.ncbi.nlm.nih.gov/33846138/

Chronic fatigue syndrome/myalgic encephalomyelitis in children aged 5 to 11 years: A qualitative study

Abstract:

Treatments for paediatric chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) have not been designed or evaluated for younger children (5-11-years). The development of a complex intervention for this population requires an in-depth understanding of the perspectives and psychosocial context of children and families. Children with CFS/ME (5-11-years) and their families were recruited from a specialist CFS/ME service, and interviewed using semi-structured topic guides. Data were analysed thematically. Twenty-two participants were interviewed; eight parents, two children (aged nine and ten) and six parent-child dyads (aged 5-11-years).

Theme 1: CFS/ME in younger children is complex and disabling. Theme 2: Children aged eight and over (in comparison to those under eight) were more able to describe their illness, engage in clinical consultation, understand diagnosis and self-manage. Theme 3: Parents of children under eight took full responsibility for their child’s treatment. As children got older, this increasingly became a joint effort between the parent and child. Parents felt unsupported in their caring role. Clinicians should consider different treatment approaches for children under eight, focusing on: parent-only clinical sessions, training parents to deliver treatment, and increasing support for parents. Children over eight may benefit from tools to help them understand diagnosis, treatment and aids for self-management.

Source: Brigden A, Shaw A, Anderson E, Crawley E. Chronic fatigue syndrome/myalgic encephalomyelitis in children aged 5 to 11 years: A qualitative study. Clin Child Psychol Psychiatry. 2020 Oct 22:1359104520964528. doi: 10.1177/1359104520964528. Epub ahead of print. PMID: 33092395. https://pubmed.ncbi.nlm.nih.gov/33092395/

Activity measurement in pediatric chronic fatigue syndrome

Abstract:

Objectives: Individuals with myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) experience debilitating symptoms, including post-exertional malaise, an intensification of symptoms after physical or cognitive exertion. Previous studies found differences in the activity levels and patterns of activity among individuals with ME and CFS, compared to healthy controls; however, limited research exists on the activity levels of pediatric patients. The objective of this study was to examine differences in activity between healthy children and youth with ME and CFS.

Methods: The present study examines the objective (i.e., ActiGraphy) and self-reported levels of activity among children (ages 5 to 17) enrolled in a community-based study of pediatric CFS.

Results: Children with ME and CFS evidenced lower activity levels than healthy control children. Moreover, participants with ME and CFS evidenced increased nighttime activity and delayed initiation of daytime activity. Participants’ self-reported activity data significantly correlated with their ActiGraph data, suggesting that children with ME and CFS are able to accurately describe their activity level.

Discussion: This study highlights differences in activity level and diurnal/nocturnal activity patterns between healthy children and those with ME and CFS. These differences should be considered in identifying appropriate supports and accommodations for children with ME and CFS.

Source: Loiacono B, Sunnquist M, Nicholson L, Jason LA. Activity measurement in pediatric chronic fatigue syndrome [published online ahead of print, 2020 Aug 17]. Chronic Illn. 2020;1742395320949613. doi:10.1177/1742395320949613 https://pubmed.ncbi.nlm.nih.gov/32806955/

Severe ME in Children

Abstract:

A current problem regarding Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is the large proportion of doctors that are either not trained or refuse to recognize ME/CFS as a genuine clinical entity, and as a result do not diagnose it. An additional problem is that most of the clinical and research studies currently available on ME are focused on patients who are ambulant and able to attend clinics and there is very limited data on patients who are very severe (housebound or bedbound), despite the fact that they constitute an estimated 25% of all ME/CFS cases.

This author has personal experience of managing and advising on numerous cases of severe paediatric ME, and offers a series of case reports of individual cases as a means of illustrating various points regarding clinical presentation, together with general principles of appropriate management.

Source: Speight N. Severe ME in Children. Healthcare (Basel). 2020;8(3):E211. Published 2020 Jul 14. doi:10.3390/healthcare8030211 https://www.mdpi.com/2227-9032/8/3/211/htm (Full text)

“The Child’s Got a Complete Circle Around Him”. The Care of Younger Children (5-11 Years) With CFS/ME. A Qualitative Study Comparing Families’, Teachers’ and Clinicians’ Perspectives’

Abstract:

Society needs to improve the care of children with complex needs. Guidelines recommend integrating care across health and educational settings, however, there is little research on whether this is achieved or how this can be done in practice. Our aim was to address this gap by examining how the care of children (aged 5-11 years) with Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (CFS/ME) is shared across home, education and health settings, in order to generate recommendations for integrating care.

We undertook semi-structured interviews with families (22 participants), teachers (11 participants) and healthcare providers (9 participants), analysing the data thematically and comparatively. Our analysis of the data was informed by a socio-ecological perspective as we sought to understand the complexity of the relationships and systems around the child. The first theme focuses on the child (“individual level”); child-centred care is seen as essential whilst acknowledging that the child has limited capacity to manage their own care. The second theme presents the distinct roles of parents, teachers and clinicians (“interpersonal and organisational levels”). The third describes how these three levels interact in the management of the child’s care, in the context of the health and education systems and policies (“policy levels”). The fourth explores optimal ways to integrate care across home, school and clinical settings.

In conclusion, there is opportunity to support a child with complex health needs by targeting the systems around the child; parents, teachers and clinicians, as well as education and health policy that can enable shared-care. Involving schools in assessment, communicating diagnosis across settings and using a stepped-care approach to integrated care may be beneficial. Further work is needed to explore these recommendations, with attention to the policy factors that may act as barriers and enablers.

Source: Brigden A, Shaw A, Barnes R, Anderson E, Crawley E. “The child’s got a complete circle around him”. The care of younger children (5-11 years) with CFS/ME. A qualitative study comparing families’, teachers’ and clinicians’ perspectives’ [published online ahead of print, 2020 Jun 9]. Health Soc Care Community. 2020;10.1111/hsc.13029. doi:10.1111/hsc.13029 https://pubmed.ncbi.nlm.nih.gov/32519359/