4.5 Article

What matters to children with CFS/ME? A conceptual model as the first stage in developing a PROM

Journal

ARCHIVES OF DISEASE IN CHILDHOOD
Volume 100, Issue 12, Pages 1141-1147

Publisher

BMJ PUBLISHING GROUP
DOI: 10.1136/archdischild-2015-308831

Keywords

-

Categories

Funding

  1. Lindbury Trust
  2. Ashden Trust
  3. RHNRD
  4. National Institute for Health Research [EC SRF-2013-06-013]

Ask authors/readers for more resources

Background Paediatric chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) is relatively common and disabling. Research is hampered because current patient-reported outcome measures (PROMs) do not capture outcomes that are important to children with CFS/ME. Aim The aim of this study was to explore the aspects of life and health outcomes that matter to children with CFS/ME. Methods Twenty-five children with CFS/ME were interviewed (11 males, 14 females; mean age 12.9 years (SD 2.2), range 8-17). Twelve were trial participants interviewed during the trial and 13 were recruited as part of a follow-up qualitative study. Parents were present in 19 interviews with their children. Three mothers participated in a focus group. All the interviews and the focus group were audio-recorded and transcribed. Data were analysed thematically using techniques of constant comparison. NVivo was used to structure and categorise data in a systematic way. Results Children identified four key themes (health outcome domains): 'symptoms' that fluctuated, which caused an unpredictable reduction in both 'physical activity' and 'social participation' all of which impacted on 'emotional well-being'. These domains were influenced by both 'management' and 'contextual factors', which could be positive and negative. The relationship between healthcare and school was considered pivotal. Conclusions Children's descriptions helped to inform a conceptual model that is necessary to develop a new paediatric CFS/ME PROM. Doctors need to be aware of how children conceptualise CFS/ME; the relationship between healthcare and school is fundamental to ameliorate the impact of CFS/ME.

Authors

I am an author on this paper
Click your name to claim this paper and add it to your profile.

Reviews

Primary Rating

4.5
Not enough ratings

Secondary Ratings

Novelty
-
Significance
-
Scientific rigor
-
Rate this paper

Recommended

Article Health Care Sciences & Services

Conservative treatment for uncomplicated appendicitis in children: the CONTRACT feasibility study, including feasibility RCT

Nigel J. Hall, Frances C. Sherratt, Simon Eaton, Isabel Reading, Erin Walker, Maria Chorozoglou, Lucy Beasant, Wendy Wood, Michael Stanton, Harriet J. Corbett, Dean Rex, Natalie Hutchings, Elizabeth Dixon, Simon Grist, William van't Hoff, Esther Crawley, Jane Blazeby, Bridget Young

Summary: The feasibility of a multicentre randomised controlled trial comparing non-operative treatment with appendicectomy for uncomplicated acute appendicitis in children has been established, with good adherence to trial procedures and follow-up. The study identified the main cost drivers and developed a core outcome set, paving the way for a future effectiveness trial.

HEALTH TECHNOLOGY ASSESSMENT (2021)

Meeting Abstract Nutrition & Dietetics

Fish consumption in relation to national advice in pregnant women in England

L. Beasant, J. Ingram, J. Golding, J. Cade, C. M. Taylor

PROCEEDINGS OF THE NUTRITION SOCIETY (2022)

Article Health Care Sciences & Services

'Opportunity to bond and a sense of normality': Parent and staff views of cuddling babies undergoing therapeutic hypothermia in neonatal intensive care: 'CoolCuddle'

Jenny Ingram, Lucy Beasant, David Odd, Ela Chakkarapani

Summary: This study found that allowing parents to cuddle their babies during cooling therapy enhances parent-infant bonding and family-centered care in the NICU and is positively received. Both parents and staff believed that the closeness between parents and babies is important, with fathers particularly appreciating the opportunity to bond with their infants.

HEALTH EXPECTATIONS (2022)

Article Public, Environmental & Occupational Health

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

Philippa Clery, Catherine Linney, Roxanne Parslow, Jennifer Starbuck, Amanda Laffan, Jamie Leveret, Esther Crawley

Summary: This study explores the experiences and support available to adolescents with ME/CFS in schools. The findings highlight the crucial role schools play in aiding recovery, providing educational support, and promoting social inclusion for these individuals. Three-way communication between schools, healthcare professionals, and families is seen as essential for improving support.

HEALTH & SOCIAL CARE IN THE COMMUNITY (2022)

Article Pediatrics

Patient-centred outcomes following non-operative treatment or appendicectomy for uncomplicated acute appendicitis in children

Nigel J. Hall, Frances C. Sherratt, Simon Eaton, Erin Walker, Maria Chorozoglou, Lucy Beasant, Michael Stanton, Harriet Corbett, Dean Rex, Natalie Hutchings, Elizabeth Dixon, Esther Crawley, Jane Blazeby, Bridget Young, Isabel Reading

Summary: This study investigated the comparative patient-centered outcomes between non-operative and surgical treatment for uncomplicated acute appendicitis in children. The preliminary data showed that children treated with non-operative treatment reported higher short-term quality of life scores, shorter duration of requiring analgesia, more rapid return to normal activities, and shorter parental absence from work compared to those who underwent appendectomy. These findings suggest the importance of further measuring recovery profile and quality of life in a larger randomized controlled trial.

BMJ PAEDIATRICS OPEN (2023)

Correction Health Care Sciences & Services

Defining the minimally clinically important difference of the SF-36 physical function subscale for paediatric CFS/ME: triangulation using three different methods (vol 16, 202, 2018)

Amberly Brigden, Roxanne M. Parslow, Daisy Gaunt, Simon M. Collin, Andy Jones, Esther Crawley

HEALTH AND QUALITY OF LIFE OUTCOMES (2023)

Article Obstetrics & Gynecology

Provision of information by midwives for pregnant women in England on guidance on foods/drinks to avoid or limit

Lucy Beasant, Jenny Ingram, Rachel Tonks, Caroline M. Taylor

Summary: This study investigated the accuracy and confidence of midwives in providing advice on dietary restrictions for pregnant women in England. The findings suggest that midwives lack confidence in providing advice on certain items and frequently make mistakes in recalling information. Providing guidance on food restrictions requires appropriate training and resources, as well as sufficient time.

BMC PREGNANCY AND CHILDBIRTH (2023)

Article Medicine, General & Internal

Flash glucose monitoring in young people with type 1 diabetes-a qualitative study of young people, parents and health professionals: 'It makes life much easier'

Lucy Beasant, Freyja Cullen, Elizabeth Thomas, Rebecca Kandiyali, Julian P. H. Shield, David Mcgregor, Nicol West, Jenny Ingram

Summary: This study explored the experiences of young people and their parents using the Freestyle Libre sensors, as well as the benefits and challenges for healthcare professionals in adopting this technology. The findings showed that flash glucose monitoring improved the confidence and independence of young people in managing their diabetes, and healthcare professionals were enthusiastic about the technology and its potential for tailored patient support.

BMJ OPEN (2023)

Article Nutrition & Dietetics

Fish Consumption during Pregnancy in Relation to National Guidance in England in a Mixed-Methods Study: The PEAR Study

Lucy Beasant, Jenny Ingram, Caroline M. Taylor

Summary: The aim of the study was to provide evidence on the effectiveness of the guidance on limiting or avoiding certain foods during pregnancy. The findings showed that pregnant women reduced their intake of oily and white fish, with some avoiding fish altogether. Clear and simple guidance on the recommended amount of fish consumption per week would help pregnant women benefit from the nutrients while minimizing exposure to toxins. The accuracy of the guidance on canned tuna and the relevance of the guidance on certain types of fish should be improved.

NUTRIENTS (2023)

Article Psychology, Developmental

Lockdown Experiences and Views on Future Research Participation of Autistic Adults in the UK During the First 6 Months of the COVID-19 Pandemic

Alba X. X. Realpe, Nicola Mills, Lucy Beasant, Sarah Douglas, Lorcan Kenny, Dheeraj Rai

Summary: This study explored the impact of the COVID-19 pandemic on the willingness of autistic people to engage in research. Autistic adults reported both positive aspects and challenges during the lockdown, and expressed concerns about inconsistent communication during the transition out of lockdown. The study found that autistic people support online research methods and value inclusivity.

AUTISM IN ADULTHOOD (2023)

Meeting Abstract Nutrition & Dietetics

Effectiveness of national guidance on foods and drinks to limit or avoid in pregnancy in England

L. Beasant, J. Ingram, P. M. Emmett, J. E. Cade, C. M. Taylor

PROCEEDINGS OF THE NUTRITION SOCIETY (2022)

Article Medicine, Research & Experimental

The challenge of equipoise: qualitative interviews exploring the views of health professionals and women with multiple ipsilateral breast cancer on recruitment to a surgical randomised controlled feasibility trial

Jenny Ingram, Lucy Beasant, John Benson, Adrian Murray Brunt, Anthony Maxwell, James Richard Harvey, Rosemary Greenwood, Nicholas Roberts, Norman Williams, Debbie Johnson, Zoe Winters

Summary: This study investigates the barriers to recruiting women for a breast cancer surgical trial. The main obstacles include healthcare professionals' preferences and beliefs, lack of equipoise, patients' altruism and influences from consultants, and doubts during the diagnostic journey. Alternative study designs may be needed to provide high-quality evidence for surgical interventions.

PILOT AND FEASIBILITY STUDIES (2022)

Article Pediatrics

Experiences of pain in paediatric chronic fatigue syndrome/myalgic encephalomyelitis: a single-centre qualitative study

Teona Serafimova, Caitlin Ascough, Roxanne Morin Parslow, Esther Crawley

Summary: Moderate to severe pain is common in children with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), and it significantly impacts their daily lives. Effective pain treatment options for these children are currently lacking.

BMJ PAEDIATRICS OPEN (2022)

Article Pediatrics

A Smartphone App for Supporting the Self-management of Daytime Urinary Incontinence in Adolescents: Development and Formative Evaluation Study of URApp

Katie Whale, Lucy Beasant, Anne J. Wright, Lucy Yardley, Louise M. Wallace, Louise Moody, Carol Joinson

Summary: This study describes the development of a smartphone app called URApp aimed at improving concordance with bladder training in young people aged 11 to 19 years. The app was tested and found to be helpful in improving bladder symptoms and enhancing quality of life, with high levels of acceptability reported by both young people and clinicians. Further evaluation in different settings is needed to determine the effectiveness and cost-effectiveness of URApp.

JMIR PEDIATRICS AND PARENTING (2021)

Article Medicine, Research & Experimental

CBT repackaged or a novel treatment? The. Lighting Process compared with UK specialist medical care for paediatric Chronic Fatigue Syndrome

Emma C. Anderson, Maria Loades, Jennifer Starbuck, Phil Parker, Fiona Finch, Rebecca Barnes, Lucy Beasant, Esther Crawley

Summary: The study compared LP with SMC approaches, identifying distinct elements of LP including language style, neurophysiological rationale, affective/physiological change technique, and mode of delivery. These findings could inform future interventions or research to improve clinical outcomes for children with CFS/ME.

FATIGUE-BIOMEDICINE HEALTH AND BEHAVIOR (2021)

No Data Available