Research Issues in Children

1
Research Issues in Childrens Palliative Care

• Dr Nicola Eaton
• Director of Childrens Palliative Care and
  Complex Needs Research

2
Introduction

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

3
Childrens Palliative Care and Complex Needs
Research Team

• Dr Antonia Beringer, Research Fellow
• Mary Lewis, Research Associate
• Ann OBrien, 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

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Palliative Care Research

• Most research into palliative care is with adults
  
• Most research into childrens palliative care is
  with children with cancer
• For children with non malignant conditions there
  is little research evidence

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Definition of Childrens 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 Childrens Palliative
  Care)

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ACT Groups

1. 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
2. Conditions where premature death is inevitable,
   where there may be long periods of intensive
   treatment aimed at prolonging life and allowing
   participation in normal activities. E.g. cystic
   fibrosis
3. Progressive conditions where curative treatment
   is exclusively palliative and may extend over
   many years. E.g. Batten disease,
   mucopolysaccharidoses, muscular dystrophy
4. 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

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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)

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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)

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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 childs
  pain and symptoms, and provide bereavement care

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• 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

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

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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

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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 Childrens Nursing Teams

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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?

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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 childs
• Multi dimensional concept
• Main concerns (of adults carers)
• Symptom control
• Staff competence
• Information provision

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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

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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

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Respite care

• No studies on effects on carers or outcomes
• Hospices few evaluations, mainly based on
  retrospective studies of parents

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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

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Siblings

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

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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

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Community Childrens Nursing Teams

• Many different models
• Need to clarify optimum structure
• Training and education needs
• Few courses
• Key workers

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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

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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

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Childrens 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

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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

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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

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

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Progress to date

• 8 teams taking part in CFI data (Ethics and RD
  approvals)
• Data collection in progress

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Local Evaluation

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

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Service Development

• Funded by Queens Nursing Institute
• Aim to investigate CCNs experience of setting
  up a service
• Method telephone interviews
• Output guidelines
• Child Care, Health and Development article in
  press

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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

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Research Needed

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

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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

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• 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

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Conclusion

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

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Thank you for listening

• Contact details
• Dr Nicola Eaton
• Tel[phone]
• Mobile [phone]
• Email nicola.eaton_at_uwe.ac.uk