Assessment of the feasibility and clinical value of further research to evaluate the management options for children with Down syndrome and otitis media with effusion: a feasibility study

Fortnum, Heather; Leighton, Paul; Smith, Mike U.; Brown, Lisa; Jones, Matthew; Benton, Claire; Marder, Elizabeth; Marshall, Andrew; Sutton, Kate

doi:10.3310/hta18600

Cited by 15 publications

(10 citation statements)

References 65 publications

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“…An Health Technology Assessment study exploring the feasibility of recruiting children aged 1–11 years with DS into an otitis media, treatment study, interviewed clinicians and parents regarding recruitment. 7 Their conclusions were similar: any research needs to account for both the shared experiences of parents with a baby with DS and the variety of personal experiences. However, alternative recruitment strategies were not explored, and more novel recruitment methods may allow some of the variation in personal perspectives and timings to be navigated.…”

Section: Discussionmentioning

confidence: 91%

What factors influence recruitment to a birth cohort of infants with Down’s syndrome?

et al. 2018

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ObjectiveTo understand how to maximise recruitment of young infants with Down’s syndrome (DS) into research through qualitative interviews with parents and care providers. In complex neonatal and genetic conditions such as DS, frequently diagnosed after birth, parents may go through a period of adaptation. These factors need consideration when overcoming barriers to recruitment.Participants and designParticipants, who were drawn from health professionals and volunteers working with families experiencing DS, were recruited using a purposive sampling strategy. Semistructured telephone interviews were completed with nine paediatricians, three research nurses and six family support workers. Five of those interviewed had a child with DS. The interviews were transcribed and analysed thematically.ResultsA positive decision to take part in a ‘from-birth’ cohort study depends on factors such as the child’s overall health, parent demographics (educational background and ethnicity), medical interactions that take place with the families (communication) and study logistics. The data suggest that recruitment methods need to take all these factors into consideration. Multiple recruitment methods should be considered including face to face, through parent and support groups, websites and social media. There also needs to be flexibility in the research timings to fit around the needs of the child and parents.ConclusionResearchers need to be aware of the variable responses elicited by families to a diagnosis of DS for their baby and be sensitive to the child’s current medical status. This does not preclude recruitment into studies, but to maximise uptake good communication and flexibility is essential.

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Section: Discussionmentioning

confidence: 91%

What factors influence recruitment to a birth cohort of infants with Down’s syndrome?

et al. 2018

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“…Future research should investigate hearing support for children with Down syndrome as they are prone to glue ear. 11…”

Section: Discussionmentioning

confidence: 99%

Management of conductive deafness from Otitis Media with Effusion (known as ‘glue ear’) in children using bone conduction headsets when grommet operations were unavailable during COVID-19

Brown

O’Connor

Bewick

et al. 2021

Preprint

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BackgroundOtitis Media with Effusion (OME) causing hearing impairments affects ∼1 in 10 children starting school in UK/ Europe. 80% have at least one episode with most having conductive hearing loss. Studies showed children with OME hear better with bone conducting headsets. During COVID-19 we investigated whether children with deafness secondary OME, without access to audiology or grommet surgery, could be aided with bone conduction kits and the HearGlueEar app.MethodsStarting July 2020, during COVID-19, children aged 3-11 years with OME and on a grommet waiting list were invited to a single arm, prospective study. They received the kit, instructions and HearGlueEar app by post. By 3 weeks parents were asked to charge and pair the devices, attend a remote consultation and complete an OMQ-14 questionnaire. Remote follow-up lasted 3 months. Outcomes: ability to use the equipment, complete the questionnaire about child’s hearing and behaviour before and with the equipment, declining grommet surgery or where deafness resolved, and give opinion about the intervention.Findings26 children enrolled. Families used the kit at home and school. Most found remote consultations positive and convenient. OMQ-14 responses were 90% positive. Comments were: “Other people have said, wow his speech is clearer.”, “It is making a real difference at home.”, “He said over and over again, “I can hear everybody, wow, wow, wow.”, “It is no exaggeration to say this has made an astronomical improvement to his quality of life”. One child reported “I can hear my best friend again”. “She is getting on really well with the headphones - pairing them with the iPad at home is simply brilliant.” Three families continued with the headset to avoid grommets.InterpretationPosting a bone conduction kit, HearGlueEar app and remote consultation is effective support for children with deafness secondary to OME.FundingNone

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“…Numerous studies have shown that children with Down's Syndrome have a higher prevalence of OME. 29 This is thought to result from differences in the anatomy of the Eustachian tube and increased susceptibility to middle ear infections. Children with Down's Syndrome frequently experience challenges with learning, speech and language, and prolonged hearing impairment due to chronic OME can exacerbate these developmental delays.…”

Section: Ome and Down's Syndromementioning

confidence: 99%

An evaluation of the Hear Glue Ear mobile application for children aged 2–8 years old with otitis media with effusion

Fordington

Brown

2020

DIGITAL HEALTH

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Objectives To evaluate the acceptability and usability of the Hear Glue Ear mobile application to guide families and support speech and language development in children with otitis media with effusion (OME). To assess the validity of the app’s game-based hearing test to estimate changes in hearing levels between audiology appointments. Method This evaluation examined 60 children aged 2–8 with and without OME, attending Cambridge Community Audiology clinics. Children’s performance in the app’s hearing test was compared to their pure tone average (PTA) obtained in clinic. Children and caregivers completed questionnaires after their first interaction with the app, and after one week of using it at home. 18 clinicians completed anonymous questionnaires after trialling the app. Results Results from the app’s hearing test show a significant correlation with clinic PTA values ([Formula: see text]). 73.1% of caregivers supported their child using the app regularly and 85% thought it enabled them to give more accurate reports to clinicians. After one week, 87.0% of families downloaded and used the app at home, and 85.7% of these felt it provided strategies to help their child. 100% of children liked the app and 93.3% found it easy to use. 77.8% of clinicians supported patients using the app regularly. Conclusions Hear Glue Ear is acceptable to children, caregivers and clinicians as part of OME management. The app’s hearing test provides a valid estimate of fluctuating hearing levels. Hear Glue Ear is a free, accessible and family-centred intervention to provide trusted information and support development, as NICE guidance recommends.

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Assessment of the feasibility and clinical value of further research to evaluate the management options for children with Down syndrome and otitis media with effusion: a feasibility study

Abstract: The National Institute for Health Research Health Technology Assessment programme.

Cited by 15 publications

References 65 publications

What factors influence recruitment to a birth cohort of infants with Down’s syndrome?

What factors influence recruitment to a birth cohort of infants with Down’s syndrome?

Management of conductive deafness from Otitis Media with Effusion (known as ‘glue ear’) in children using bone conduction headsets when grommet operations were unavailable during COVID-19

An evaluation of the Hear Glue Ear mobile application for children aged 2–8 years old with otitis media with effusion

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