Research Issues in Children’s Palliative Care

1. Research Issues in Children’s Palliative Care Dr Nicola Eaton Director of Children’s Palliative Care and Complex Needs Research

2. Introduction • Size and nature of the problem • Literature review • Research programme • Education programme • Future research

3. Children’s Palliative Care and Complex Needs Research Team • Dr Antonia Beringer, Research Fellow • Mary Lewis, Research Associate • Ann O’Brien, Research Associate Collaborators include: Dr Simon Lenton Sonia Ezergailis (ACH) Dr Fiona Finlay Lizzie Chambers (ACT) Vineeta Gupta Dr Nicky Harris (CHSW) Jacky McCallum CPC Teams around England

4. Palliative Care Research • Most research into palliative care is with adults • Most research into children’s palliative care is with children with cancer • For children with non malignant conditions there is little research evidence

5. Definition of Children’s Palliative Care “Palliative care is an active and total approach to care, embracing physical, emotional, social, and spiritual elements. It focuses on enhancement of quality of life for the child and support for the family and includes the management of physical symptoms, provision of respite, and care following death and bereavement. It is provided for children for whom curative treatment is no longer an option and may extend over many years.” ACT/RCPCH (2003) (ACT = Association for Children’s Palliative Care)

6. ACT Groups • Life-threatening conditions for which curative treatment may be feasible but can fail, where access to palliative care services may be necessary when treatment fails. Children in long term remission or following successful curative treatment are not included. E.g. cancer, irreversible organ failure • Conditions where premature deathis inevitable, where there may be long periods of intensive treatment aimed at prolonging life and allowing participation in normal activities. E.g. cystic fibrosis • Progressive conditions where curative treatment is exclusively palliative and may extend over many years. E.g. Batten disease, mucopolysaccharidoses, muscular dystrophy • Irreversible but non progressive conditions causing severe disability leading to susceptibility to health complications and premature death. E.g. severe cerebral palsy, multiple disabilities such as following brain or spinal cord injury

7. Size of the problem Estimates of the prevalence of non-malignant life threatening illness in childhood • Cross sectional survey of children 0-19 years in Bath clinical area (total population 411,000) • Identified 123 children – prevalence of 1.2 per 1000 (4 times greater than previous estimates) (Lenton et al 2000)

8. Prevalence data • Northern Ireland – 1.72 per 1000 (exclude malignant disease and it is 1.52 per 1000) • Calderdale and Kirklees – 1.62 per 1,000 • South Glamorgan 1 per 1000 • No national register (as in Cancer)

9. Models of care • Hospital • Palliative care – often seen as defeat or giving up • Most children want to die at home but only a few do • Care providers should recognise a need for palliative care, assess emotional and spiritual needs of the child and family and facilitate advance care planning, assess and manage child’s pain and symptoms, and provide bereavement care

10. Hospice • Hospice movement – now 39 with 4 hospice at home and 1 day care service • Not like adult hospices – ‘home from home’ • Respite care mainly • Sibling and family support

11. Home/community • CCN teams (generalist) • Palliative care teams – e.g. Lifetime • BLF funding in 2003 (£48m)

12. Disease groups likely to be on a service caseload • Metabolic conditions • e.g. mucopolysaccharidoses • Diseases of the nervous system • e.g. cerebral palsy, Batten disease, spinal muscular atrophy (sma), Duchenne muscular dystrophy • Cardiac anomalies • Respiratory disorders • e.g. cystic fibrosis • Chromosomal disorders • e.g.Edwards syndrome • Diseases of the immune system • e.g. HIV • Trauma • Accidental and non-accidental injuries

13. Review of the research literature • Clinical Care • Satisfaction with services • Quality of life • Parental mental health • Respite care • Child as participant • Siblings • End of Life care • Community Children’s Nursing Teams

14. Clinical care • Symptom control • Pain • Seizures • Respiratory symptoms • Need to measure outcomes against care pathways • Complementary and alternative therapies • What is used and with what effect? • Do families tell their doctors?

15. Satisfaction with service • Limited evidence for care outside hospital • Different models – not evaluated • Mainly parent satisfaction • But not well defined – muddled with QoL • Their perspective is different to child’s • Multi dimensional concept • Main concerns (of adults carers) • Symptom control • Staff competence • Information provision

16. Quality of Life • Child • Difficult to measure in non-communicating child • Measures mainly disease specific but some generic measures available • Siblings • Better proxy for child than parents • Family • Coping strategies used • Normality promoted • Fathers and mothers cope differently

17. Parental mental health • Mental health compromised • Few targeted programmes in adult literature • Respite could help • Few studies on how • Programmes to support mental health interventions not evaluated

18. Respite care • No studies on effects on carers or outcomes • Hospices – few evaluations, mainly based on retrospective studies of parents

19. Child as participant • QoL of child usually by proxy • Need to ask child and evaluate longitudinally • Sexuality of young people • Denied or neglected • Spirituality • Faith important to adults at this time • Lack of research and policy development for adolescents and young adults and at time of transition to adult care

20. Siblings • Interventions and outcomes not formally evaluated • Information sharing and home care important to siblings • Optimal coping strategies

21. End of life care • Infants who had palliative care had fewer interventions • Characteristics of a ‘good death’ from families perspective • Empowering families to be in control

22. Community Children’s Nursing Teams • Many different models • Need to clarify optimum structure • Training and education needs • Few courses • Key workers

23. Hospital or Community • Children want to be at home • Parents want children to be at home • But fearful of symptoms at death • CCN services can support • Coping strategies need to be explored • Particularly fathers • Cost effectiveness of services to keep children at home unknown

24. Research potential • Came about due to National Lottery Funding in 2003 • Funded 71 community teams in England (and bereavement and hospices) • £48m for three years ‘pump priming’ with PCTs taking over funding

25. Children’s Palliative Care Course • Offered to all successful NOF (BLF) Teams • Aims • Teaching • Evaluation • Networking and support • Sharing protocols/guidelines etc • 29 teams participated over three years

26. Research Programme at CCAH • National Evaluation • Local evaluation • Staff perspective on setting up and running a service • Impact on fathers of caring for a child with a LL condition • Complementary and Alternative Medicines • NIHR Programme bid

27. National Evaluation • Aims • Description of services • Description of the children and families who access these services • An assessment of the impact of these services on family functioning and well-being • Research questions and tools developed in collaboration with course members

28. Tools • Team structure questionnaire • Child and family information sheet • Diversity monitoring form • Various psychological tools e.g. • PedsQL • GHQ • HAD • PSI

29. Progress to date • 8 teams taking part in CFI data (Ethics and R&D approvals) • Data collection in progress

30. Local Evaluation • Local Children’s Palliative Care Partnership • Social services (3 areas) • Lifetime Service (CCN Service) • Jessie May Trust (Hospice at Home) • Based on National Evaluation

31. Service Development • Funded by Queen’s Nursing Institute • Aim – to investigate CCN’s experience of setting up a service • Method – telephone interviews • Output – guidelines • Child: Care, Health and Development article in press

32. Impact on Fathers • Avon Primary Care Research Collaborative funded • Aim – to investigate and describe the impact on fathers of having a child with a life limiting condition • Method – SS Interviews and PSI and IOF • Output – Questionnaire for future national study • At data analysis stage

33. Research Needed • National strategy • Epidemiological studies • Mixed methodologies • National collaborations • Economic evaluations • Evaluation of interventions and training and education

34. NIHR Bid • Based on ACT Integrated Multi Agency Pathway for Children with LL and LT Conditions (2004) • Charts the journey of families with a child with LL or LT condition - key events • Diagnosis, • Ongoing care • End of life

35. Identifies 5 standards along the way • Prognosis – breaking bad news • Transfer and liaison between hospital and community • Multidisciplinary assessment of needs • Child and family care plan • End of life plan • Economic evaluation • BME families

36. Conclusion • Size and nature of the problem • Literature review • Research programme • Education programme • Future research Programme

37. Thank you for listening Contact details Dr Nicola Eaton Tel:0117 33 10 8093 Mobile: 07971 775682 Email: nicola.eaton@uwe.ac.uk