Hospitalizations and associated costs in a population‐based study of children with Down Syndrome born in Florida

Policy Practice Intel Disabi

Redman²

2018

Children with Down syndrome are at an increased risk of health and development issues in early childhood, therefore monitoring their development and identifying health conditions as early as possible is critical. Health professionals may not always have the training and knowledge to effectively support families of children with disabilities, including Down syndrome. In the UK, health visitors conduct health and development reviews for children under 5 years, therefore they have a key role to play in monitoring and identifying health issues in young children with Down syndrome. However there has been no research on health visitors' knowledge and training needs regarding Down syndrome. This study aimed to assess health visitors' existing knowledge of Down syndrome and evaluate a pilot Down syndrome training session for health visitors. Twenty‐six health visitors from two NHS Trusts in England participated in 1 of 5 group training workshops. Pretraining and posttraining questionnaires assessed knowledge about Down syndrome, and feedback on the training session. Knowledge about Down syndrome was low prior to the training and increased significantly following the training session. Health visitors rated the training workshop very highly and would recommend it to a colleague. Health visitors identified a need for training to enable them to increase their knowledge about Down syndrome and better support families. In summary, a pilot training session about Down syndrome received positive feedback from health visitors, and led to improvements in knowledge and understanding about Down syndrome. This has the potential to improve health outcomes for children with Down syndrome.

Section: Discussionmentioning

confidence: 99%

Evaluating Health Visitors' Existing Knowledge of Down Syndrome and the Effect of a Training Workshop

Policy Practice Intel Disabi

Redman²

2018

“…Due to an increased likelihood of experiencing serious health conditions, young children with Down syndrome have increased needs for health services compared to children in the general population. Hospitalisation rates are higher than for the general population of children (Thomas et al, ), particularly in the first year of life (Dawson et al, ), and for children with congenital heart defects (Frid, Annerén, Rasmussen, Sundelin, & Drott, ). Compared to the general population, children with Down syndrome were more likely to have seen a medical specialist in the previous 12 months and they were more likely than children with an intellectual disability other than Down syndrome to have visited the emergency department multiple times (Schieve et al, ).…”

Section: Introductionmentioning

confidence: 99%

“…The evidence base about healthcare costs in Down syndrome is limited but consistently shows high costs, particularly in the early years of life (Dawson et al, ; Geelhoed, Bebbington, Bower, Deshpande, & Leonard, ). Key contributors to the cost of care for children with Down syndrome include hospitalisation, therapy, respite care and prescription drugs (Boulet, Molinari, Grosse, Honein, & Correa‐Villaseñor, ; Geelhoed et al, ).…”

Section: Introductionmentioning

confidence: 99%

“…Key contributors to the cost of care for children with Down syndrome include hospitalisation, therapy, respite care and prescription drugs (Boulet, Molinari, Grosse, Honein, & Correa‐Villaseñor, ; Geelhoed et al, ). Younger children and children with congenital health problems, particularly heart defects, are more likely to have higher rates of healthcare utilisation and higher costs (Boulet et al, ; Dawson et al, ; Frid et al, ; Geelhoed et al, ; Schieve et al, ). In the United States, greater out‐of‐pocket medical expenses are incurred by parents of children with Down syndrome, compared to parents of children without Down syndrome (Kageleiry et al, ).…”

Section: Introductionmentioning

confidence: 99%

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Health monitoring of young children with Down syndrome: A parent‐report study

Redman

2019

Brit J Learn Disabil

Accessible summary• Young children with Down syndrome often have serious health conditions, such as heart or thyroid problems.• It is important that health professionals follow guidelines to make sure that these health conditions are diagnosed and treated.• We asked parents of children with Down syndrome aged 0-5 years whether their child had received health care as set out in the guidelines.• Parents reported that guidelines were mostly followed at birth and for diagnosed health conditions. Guidelines were less likely to be followed after birth and for checking for undiagnosed health conditions. AbstractBackground: Children with Down syndrome have an increased risk of serious health conditions, particularly in early childhood. Published guidelines promote the identification and monitoring of health issues and adherence could reduce health inequalities, yet there is limited research about the extent to which health monitoring occurs as recommended. This study aimed to investigate the health monitoring of children with Down syndrome aged 0-5 years in the UK. Materials and Methods: Twenty-four parents of children with Down syndrome with a mean age of 32 months (10-65 months) participated. They completed a questionnaire about their child's healthcare usage, diagnoses of health conditions and whether health checks had been completed at birth and since birth. The results of the questionnaires were charted and compared to the schedule of checks produced by the Down Syndrome Medical Interest Group UK.Results: Children with Down syndrome had high usage of health services and reported significant health issues. There was high adherence to published guidelines for the majority of health checks at birth, although 38% of children had not received all recommended checks. Not all health domains had been monitored since birth for all children, particularly breathing and blood (excluding thyroid). With the potential exception of sleep apnoea, diagnosed conditions appeared to be monitored. Conclusions:This study suggests that health monitoring after birth and screening for nondiagnosed health conditions is variable for children with Down syndrome.Further research should examine convergence of these findings with medical records and clinicians' experiences across the UK. | 11 MENGONI aNd REdMaN

“…Due to the increased prevalence of health issues, children with Down syndrome typically have a high utilisation of health services and early intervention is key to improve long-term child and family outcomes (Marshall et al, 2015, Dawson et al, 2014, Schieve et al, 2009.…”

Section: Introductionmentioning

confidence: 99%

Parents' experiences of health visiting for children with Down syndrome

Journal of Health Visiting

Redman

2018

Children with Down syndrome have an increased likelihood of experiencing serious health conditions. Health visitors can have an important role in monitoring and promoting health and development for young children with Down syndrome. This study aimed to explore parents' experiences of health visiting services for children with Down syndrome. Twenty-four parents of children with Down syndrome aged 0–5 years completed a brief questionnaire about the number and nature of visits from health visitors in the previous 12 months and their support needs. Some parents commented that other professionals met the needs of their child, whereas others said that they would like more advice and support from health visitors. A further exploration of broader health service provision, including health visiting, for young children with Down syndrome is needed.