PhD Study : Long term Quality of Life of Children and Young Adults with Down syndrome following surgery for Congenital Heart Disease

Summary

Background:

Down syndrome continues to be the most common chromosomal disorder with an incidence of approximately 1 in 700 births. Forty five percent of those born with Down Syndrome (DS) will have Congenital heart disease (CHD) and many will require surgical treatment. Immediate surgical outcomes have improved dramatically, but there are very few studies of longterm Quality of Life and broader developmental outcomes in this group.

The Paediatric Cardiology Department at The Royal Belfast Hospital for Sick Children (RBHSC) manages the acute cardiac care and long term follow-up of all children born with DS and CHD in Northern Ireland. This gives a unique opportunity to ascertain complete follow-up information on the whole population with DS born in the region.

The research team have extensive experience and a strong track record in publishing research relating to Quality of Life outcomes in children with CHD and broader developmental outcomes.

Main Research Questions:

1. What is long term Quality of Life for this patient group as measured by:

(a) Physical well-being

(b) Psychosocial well-being

(c) Educational attainment

(d) Employment (where applicable)

2. In addition, what is the impact of these factors on family functioning?

Methods and Study Sample.

The Paediatric Cardiology Department at RBHSC has a comprehensive registry of all children born in Northern Ireland with DS.. This registry extends from 1990 to the present time and has details on approximately 1075 patients. This will therefore be the largest study to date of Quality of LIfe in those born with DS.

Study participants will be identified from the registry and will have a comprehensive assessment to include measures of physical well-being, psychosocial well-being and educational attainment. The medical assessment will evaluate current cardiac status and measures of activity and exercise participation.

The study methods will include Health Related Quality Of Life (HRQOL) assessment, and measures of psychosocial (Strengths and Difficulties questionnaire) and educational outcomes. The Impact on Family (IoF) scale will also be used to assess wider impact on family functioning.

The final study design will be constructed with the participation of the Children’s Heartbeat Trust, which is the parent support group for families affected by CHD in Northern Ireland, and also in consultation with the Down Syndrome Association.

Impact:

1. Provide long-term outcome evaluating benefits of medical treatment on a large and unique patient cohort.
2. Highlight areas for improvement in the medical, psychosocial and educational support provided to those born with DS.
3. Devise strategies to optimise care and quality of life outcomes for this patient group.

Desirable: Background in Paediatric Cardiology, General or Community Paediatrics, Learning Disability, Nursing or Educational/Clinical Psychology

AccessNI clearance required

Please note, the successful candidate will be required to obtain AccessNI clearance prior to registration due to the nature of the project.

Essential criteria

Applicants should hold, or expect to obtain, a First or Upper Second Class Honours Degree in a subject relevant to the proposed area of study.

We may also consider applications from those who hold equivalent qualifications, for example, a Lower Second Class Honours Degree plus a Master’s Degree with Distinction.

In exceptional circumstances, the University may consider a portfolio of evidence from applicants who have appropriate professional experience which is equivalent to the learning outcomes of an Honours degree in lieu of academic qualifications.

Funding and eligibility

The University offers the following levels of support:

Vice Chancellors Research Studentship (VCRS)

The following scholarship options are available to applicants worldwide:

• Full Award: (full-time tuition fees + £19,000 (tbc))
• Part Award: (full-time tuition fees + £9,500)
• Fees Only Award: (full-time tuition fees)

These scholarships will cover full-time PhD tuition fees for three years (subject to satisfactory academic performance) and will provide a £900 per annum research training support grant (RTSG) to help support the PhD researcher.

Applicants who already hold a doctoral degree or who have been registered on a programme of research leading to the award of a doctoral degree on a full-time basis for more than one year (or part-time equivalent) are NOT eligible to apply for an award.

Please note: you will automatically be entered into the competition for the Full Award, unless you state otherwise in your application.

Department for the Economy (DFE)

The scholarship will cover tuition fees at the Home rate and a maintenance allowance of £19,000 (tbc) per annum for three years (subject to satisfactory academic performance).

This scholarship also comes with £900 per annum for three years as a research training support grant (RTSG) allocation to help support the PhD researcher.

• Candidates with pre-settled or settled status under the EU Settlement Scheme, who also satisfy a three year residency requirement in the UK prior to the start of the course for which a Studentship is held MAY receive a Studentship covering fees and maintenance.
• Republic of Ireland (ROI) nationals who satisfy three years’ residency in the UK prior to the start of the course MAY receive a Studentship covering fees and maintenance (ROI nationals don’t need to have pre-settled or settled status under the EU Settlement Scheme to qualify).
• Other non-ROI EU applicants are ‘International’ are not eligible for this source of funding.
• Applicants who already hold a doctoral degree or who have been registered on a programme of research leading to the award of a doctoral degree on a full-time basis for more than one year (or part-time equivalent) are NOT eligible to apply for an award.

Due consideration should be given to financing your studies. Further information on cost of living