Article Text

Implementation of a health surveillance clinic for children with Down syndrome
  1. Niamh C Lagan1,2,
  2. Fiona Mc Grane1,2,
  3. Dean Huggard2,
  4. Jennifer Sharkey3,
  5. Claire Purcell4,
  6. Joanne Balfe1,2,
  7. Eleanor Molloy2,4
  1. 1 Department of Neurodisability and Developmental Paediatrics, Children's Health Ireland at Tallaght, Dublin, Ireland
  2. 2 Paediatrics, Academic Centre, Tallaght University Hospital, University of Dublin Trinity College, Dublin, Ireland
  3. 3 Audiology, Tallaght University Hospital, Dublin, Ireland
  4. 4 Paediatrics, Children's Health Ireland at Tallaght, Dublin, Ireland
  1. Correspondence to Professor Eleanor Molloy, Paediatrics, Trinity College Dublin, Dublin 24, Ireland; eleanor.molloy{at}tcd.ie

Abstract

The implementation of the multidisciplinary Down Syndrome Health Surveillance clinic at Children’s Health Ireland at Tallaght, Dublin has shown significant improvements in the adherence to guidelines as well as providing health promotion strategies such as information on immunisations. Our project provides a framework which would be potentially emulated and used in other medical conditions. The reduction in clinic attendances and co-ordination of same-day appointments has improved parental satisfaction as well as the quality of care.

  • down syndrome
  • quality improvement

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The problem

Down syndrome (DS) or Trisomy 21 is the most prevalent chromosomal abnormality accounting for 8% of all registered cases in Europe.1 One baby with DS is born out of every 444 live births in Ireland, with approximately 110 babies with DS being born in Ireland each year.2 Recent decades have seen a substantial increase in the life expectancy of children with DS from 10 years in 1960 to 47 years in 2007. This has been primarily associated with advances in successful early treatment of congenital heart disease.1 2 The implementation of medical guidelines with preventative healthcare programmes continue to help improve life expectancy and quality of life.1

The disability services in Ireland have historically been provided by religious and charitable organisations dedicated to a single type of disability. Today, the services in the Mid-Lenister area are still largely provided by non-statutory service providers. Access to a paediatrician is variable across the disability services; therefore, children with DS may see a paediatrician in the disability service they attend or by attending a busy general paediatric clinic. Logistical difficulties exist while reviewing children in the community setting with limited access to blood results, x-ray reports and appropriate equipment. Parents are often required to bring children to multiple busy appointments.

Aim

For 100% of children with DS at Children’s Health Ireland at Tallaght, Dublin to receive care as outlined by the guidelines outlined by the Down Syndrome Medical Interest Group (DSMIG) UK and Ireland (table 1).3

Table 1

Down syndrome medical management guidelines outlined by DSMIG UK and Ireland

Making a case for change

In 2015, an audit of adherence to medical guidelines outlined by DSMIG was performed comparing children attending a disability-based service with a hospital-based service. Compliance to guidelines was higher in the hospital-based clinic (table 2). Recommendations from the audit included development of a clinical proforma to encourage adherence to the guidelines, as well as developing access to phlebotomy and audiology. The position of Down Syndrome Clinical Nurse Specialist (DS CNS) was funded by the Health Services Executive a number of years prior. An interprofessional group performed a root cause analysis and developed a dedicated multidisciplinary DS Health Surveillance Clinic (DSHSC) amalgamating the clinic run in the disability service with children attending hospital-based general paediatric clinics. Funding for secretarial support was obtained from the hospital. Information regarding the new structure of the clinic was disseminated to parents.

Table 2

Improvement in adherence to guidelines with implementation to Down Syndrome Health Surveillance Clinic

Improvements seen

The DSHSC occurs twice monthly and caters for 270 children with DS. Approximately eight children are seen in each clinic. Families are reviewed by the medical team and DS CNS and rotate through audiology and phlebotomy as required. Inclusion of ophthalmology assessment may overwhelm patients especially those with higher sensory needs and has not been included to date. A Plan-Do-Study-Act (PDSA) approach was used to improve efficiency of the journey through the clinic. As predicted, the commencement of the clinic improved adherence to guidelines. The second PDSA cycle was the development of a clinical proforma as a prompt to clinical history. The addition of specific questions regarding symptoms of obstructive sleep apnoea, coeliac disease and atlanto-axial instability led to further improvement in adherence to guidelines (figure 1). The clinic is primarily focused on medical needs of the children attending; however, developmental progress is also assessed. Multidisciplinary intervention continues to be provided in the community through the patients’ disability service (online supplementary appendix 1).

Figure 1

Run chart showing the percentage of patients attending the clinic monthly with full adherence to the health surveillance guidelines.

As noted in figure 1, compliance to national guidelines improved with each iteration of the clinic. Adherence to guidelines was reviewed in a number of patients (n=58) attending the clinic at different time frames attending the DSHSC chosen at random of similar demographics. Significant improvements in assessing for symptoms of obstructive sleep apnoea, coeliac disease and arthropathy associated with DS were noted with the new clinical proforma (table 2).

In conjunction with the review of adherence to guidelines, parental questionnaires were distributed at random to families attending the clinic. Parental satisfaction was 100% (n=24) good to excellent on a 5-point Likert scale. Sixty-six per cent (n=16/24) had a wait-time of less than 30 min. The parental questionnaire provided an opportunity to enquire about adherence to the DS vaccination schedule. Uptake of the annual influenza vaccine was reported 41% (n=10/24). Only 8% (n=2/24) were aware of the recommendation children with DS should have a pneumococcal 23-valent vaccination. An information leaflet on recommended vaccinations is now being sent with appointment details to improve awareness.

Learning and next steps

The DSHSC provides parents with a ‘one stop’ clinic with access to medical and nursing support, phlebotomy and audiology. The co-ordination of same-day appointments encourages adherence to guidelines, ease of sharing of information, and a reduction in the time patients and families miss from school and work. The use of a clinical proforma reduces the cognitive burden of medical staff in reviewing children and improves adherence to guidelines. The DS CNS is an invaluable resource as a point of contact for families and healthcare providers. The clinic is continuing to evolve with expanding numbers. A business case has been submitted to increase frequency of clinics as well as gain dietetic and play therapy support, which was highlighted as a priority by parents in the questionnaire. We aim to continue to run health promotion projects through the clinic. The clinical proforma is already been adapted for use at a second site. With the amalgamation of the three paediatric hospitals in Dublin in the near future, we would hope to develop the service to have interdisciplinary clinics with respiratory, cardiology and Mental Health Intellectual Disability services particularly for children with higher medical need.

References

Supplementary materials

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Footnotes

  • Contributors NCL wrote the first draft of the manuscript. Each author listed on the manuscript has seen and approved the submission of this version of the manuscript and takes full responsibility for the manuscript and its analyses and interpretation.

  • Funding This study was funded by National Children’s Hospital Fund, Tallaght and National Children’s Research Centre, Crumlin, Dublin.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement All data relevant to the study are included in the article or uploaded as online supplementary information. The data that support the findings of this study are available from the corresponding author (NCL) on reasonable request.