Addressing the Psychological Needs of Adolescent Cancer Survivors

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Addressing the Psychological Needs of Adolescent
Cancer Survivors

• Lynley Wicks
• Consultant Clinical Psychologist
• Paediatric Oncology Team
• Capital Coast Health
• lynley.wicks_at_ccdhb.org.nz

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Overview

• Importance of Late Effects
• Academic outcomes
• Psychosocial outcomes
• Addressing the psychological needs

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Importance of Late Effects

• Some Statistics

• Survival from childhood cancer has improved
  dramatically
• lt30 in 1960
• gt80 in 2000
• 1 in 900 adults are survivors of childhood cancer

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Importance of Late Effects

• Improvement in survival is due to
• Increased intensity of treatment
• Survival is most important
• If the survival rate can be maintained then
  treatment protocols will investigate treatment
  effects

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Importance of Late Effects

• Now with increasing survival rates we can begin
  to examine treatment effects
• Improvement in survival comes at the cost of
  increased long-term toxicity
• Physical
• Cognitive
• Psycho-social

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Importance of Late Effects

• Late Effects
• long-term sequelae of childhood cancer and its
  treatment Langeveld et al, 2004
• Frequency of Late Effects
• Reports from studies vary
• 58 to 69 at least one late effect
• 32 to 49 two or more late effects

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Academic Outcomes

• Survivors more likely to have declined in
  intellectual / cognitive functioning
• Outcomes are highly variable
• Skills most likely to be effected
• Attention
• Working memory
• Planning organising
• Processing speed

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Academic Outcomes

• Usually have a positive learning slope

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Academic Outcomes

• Increased intellectual declines associated with
• Being younger at age of treatment
• Being female
• Type of treatment
• Cranial irradiation
• Type of drug
• More aggressive treatment

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Academic Outcomes

• Biological factors
• Tumour size, location
• Brain abnormalities found on MRI
• Other physical effects
• seizures
• hearing

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Academic Outcomes

• Time since treatment

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Academic Outcomes

• Non-biological factors
• Missed school days
• Loss of social and environmental stimulation
• Loss of motivation
• Reduced focus on developing academic skills

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Academic Outcomes

• Survivors
• more likely to repeat school grade
• Inconsistent data re
• number of examinations passed
• finishing school
• attending tertiary education

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Academic Outcomes

• How can we address these psychological needs?
• Reduce the neuropsychological toxicity of
  treatment
• Increase surveillance of cognitive status
• Teach skills to compensate for cognitive losses
• Educate of caregivers, teachers and survivors
• Have realistic expectations
• Celebrate the skills the child has!!

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Psychosocial Outcomes

• Fewer studies evaluating
• behavioural / emotional / social differences

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Psychosocial Outcomes

• Most use measures of Quality of Life (QoL)
• QoL many different meanings
• Freedom from physical symptoms
• Being happy
• Meaningful relationships
• the state of complete physical, mental
• and social well-being (WHO)

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Psychosocial Outcomes

• Studies have examined
• Self-esteem
• Anxiety
• Depression
• Social skills
• Body Image
• Loneliness
• Mood

• Personality
• Coping
• Social desirability
• Intrusiveness
• Physical symptoms
• Post Traumatic Stress Disorder

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Psychosocial Outcomes

• In many studies no major differences
• Langeveld et al, 2004
• No difference in self esteem scores
• Fewer concerns re. general health, self image
  dying
• More concerns re. fertility, insurance,
  employment
• Lower physical functioning
• Higher vitality
• Less bodily pain

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Psychosocial Outcomes

• Emotional outcomes
• No increase in emotional difficulties
• (including depression and anxiety)
• Not at greater risk for psychiatric
  hospitalisation
• (except survivors of brain tumour increased risk
  of psychoses)
• Biological rather psychosocial vulnerability
• ? More likely to have symptoms of Post Traumatic
  Stress Disorder
• (inconsistent - related to family functioning and
  support?)

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Psychosocial Outcomes

• Body Image
• More likely to report Body Image disturbance
• Side effects more critical for children than
  adults e.g. infertility, limited growth
• Where the survivor has no obvious physical
  problem Body Image not compromised

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Psychosocial Outcomes

• Social outcomes
• ALL improves social skills!
• Less likely to be heavy drinkers
• Participated in fewer activities
• More likely to pass driving test than siblings

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Psychosocial Outcomes

• Marriage and parenting
• Lower marriage higher divorce rates
• Inconsistent
• More likely to worry about the health of the
  children

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Psychosocial Outcomes

• Employment
• Generally no difference
• Increased work discrimination?
• Females less likely to be employed

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Psychosocial Outcomes

• Variations in QoL
• Physical late effects
• Practical implication of late effects
• Compromised social life / independence
• Gender
• Unemployment
• Age at follow up
• Years since completion of therapy

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Addressing the Psychological Needs

• Regular long-term follow up
• Multi-Disciplinary teams
• Psychologists / Social Workers attached to
  Pediatric Oncology teams
• Joint Late Effects clinics
• Education
• Parents
• Adolescent/young adult
• Others involved in survivors care

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Late Affects Assessment Programme

• LEAP (began June 2006)
• All survivors to be seen by a clinical
  psychologist and paediatric oncologist 2 years
  after completion of treatment up to 20 years
  approx
• All survivors reviewed at least every two years
• Neuropsychological assessment if receive cranial
  radiation or academic problems reported
• Referred on to other services as required
• Clinics in Starship, Wellington Christchurch

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• Ultimately, cure is about controlling the
  disease, but is also about preserving dreams and
  maximising potential.
• Eiser, 2004
• Thanks to

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References

• Langeveld, N. E., et al. (2004). Quality of life,
  self-esteem and worries in young adult survivors
  of childhood cancer. Psycho-Oncology 13 867-881
• Mulhern, R. K., Butler, R. W. (2004).
  Neurocognitive sequelae of childhood cancers and
  their treatment. Pediatric Rehabilitation 7
  1-14.
• Oeffinger, K. C., Hudson, M. M. (2004).
  Long-term complications following childhood and
  adolescent cancer. CA Cancer J Clin 54 208
  236
• Wallace, W. B. H., Green, D. M. (2004). Late
  effects of childhood cancer. Arnold London.