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

Abstract

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

Care Coordination Needs of Families of Children with Down Syndrome: A Scoping Review to Inform Development of mHealth Applications for Families

“…Articles were evenly distributed between qualitative and quantitative study designs. Fourteen studies were qualitative [ 22 , 23 , 24 , 25 , 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 ], eleven were quantitative [ 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 44 , 45 , 46 ], and five were mixed methods [ 20 , 47 , 48 , 49 , 50 ]. Investigators in six studies completed secondary analyses, four using data from the National Survey of Children with Special Health Care Needs (NS-CSHCN) [ 51 , 52 , 53 , 54 ], one completing a chart review [ 7 ], and one using the Intellectual Disability Exploring Answers (IDEA) database [ 55 ].…”

“…The Emotionality, Activity, Sociability Survey, Family Adaptability and Cohesion Evaluation Scale, the brief Family Assessment Measure (FAM), Family Support Scale (FSS), Family Coping Index (FCI), Family Environment Scale, Family Index of Regeneratively and Adaptation (FIRA-G), Parent-caregiver Perception Questionnaire (P-CPQ), Perceived Social Support Scale (PSSS), Family Assessment Device (FAD), Beck Depression Inventory (BDI), Index of Social Competence (ISC) and Family APGAR were each used in one study [ 36 , 38 , 40 , 43 , 56 , 57 ]. Nine studies used measures generated by the investigators to assess caregiver needs [ 22 , 39 , 42 , 43 , 45 , 46 , 47 , 49 , 50 ].…”

“…Descriptive statistics were reported for all eleven quantitative studies, as well as the five mixed-methods studies [ 20 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 44 , 45 , 46 , 47 , 48 , 49 , 50 ]. Twelve of the studies including quantitative data completed tests of association or correlation [ 20 , 37 , 38 , 40 , 41 , 42 , 43 , 44 , 45 , 48 , 49 , 50 ].…”

“…Twelve of the studies including quantitative data completed tests of association or correlation [ 20 , 37 , 38 , 40 , 41 , 42 , 43 , 44 , 45 , 48 , 49 , 50 ]. Frequency counts were employed by five studies as part of the analysis [ 20 , 39 , 44 , 45 , 47 ]. Regression modeling was used in six studies including investigations of family adaptation [ 36 ], functioning and social support [ 38 ], care transitions [ 41 ], uncertainty and communication [ 42 ], social competence [ 43 ], and attitudes towards mHealth app usage [ 46 ].…”

“…These elements related to care coordination included knowledge of services [ 22 , 33 , 37 , 41 ], communication [ 30 , 42 ], access to care [ 44 ], information availability [ 24 , 26 , 34 , 52 ], engagement and advocacy [ 28 , 35 , 50 , 51 ], and utilization and availability of services [ 29 , 43 , 46 , 47 , 49 , 55 , 56 , 57 ]. There were three studies that addressed the AAP guidelines for care of a child with DS [ 7 , 39 , 45 ]. The other ten studies contained elements in the purpose that could be related to care coordination but was not immediately apparent from the details included in the purpose statement and were found in the study results.…”