the need for innovative (neuro)psychological interventions...chief research section psychosocial...
TRANSCRIPT
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Martha Grootenhuis
Chief Research Section Psychosocial Department, Emma Children’s Hospital/ AMC
Professor, Pediatric Psychology, Department of Pediatrics University of Amsterdam
Chair SIOP-Pediatirc Psycho-Oncology (siop-ppo)
The need for innovative (neuro)psychological interventions
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Presentation today
• Theoretical model pediatric psychology
• What do we know
• Patient Reported Outcomes in clinical practice
• Psychosocial Interventions: Op Koers
• Neuropsychological interventions
• The future
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What do we know?
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• At least 14% of children grow up with a chronic disease
• NL: 500.000 children
UK: 1.500.000 children
• Parents and siblings have to cope with this as well
Mokkink LB, van der Lee JH, Grootenhuis MA, Offringa M, Heymans HS; Dutch National Consensus Committee Chronic Diseases and Health Conditions in Childhood. Defining chronic diseases and health conditions in childhood (0-18 years of age): national consensus in the Netherlands. Eur J Pediatr. 2008 Dec;167(12):1441-7.
van der Lee JH, Mokkink LB, Grootenhuis MA, Heymans HS, Offringa M. Definitions and measurement of chronic health conditions in childhood: a systematic review. JAMA. 2007 Jun 27;297(24):2741-51. Review.
Chronic Illness in childhood
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What do we know?
• Growing number of children with a chronic illness into adulthood
• A substantial body of literature on the impact of chronic illness on children and their families is now available
• Growing number of different interventions, which sometime lack theoretical background
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• Sociodemografic
• Environmental issues
• Premorbide functioning
• Personality
• Internal resources
• Premorbid functioning
• Coping, self managem.
• Attention/memory
• Executive functioning
• Optimism
• Illness perception
• Quality of life
• School functioning
• Anxiety & depression
• Behavioral problems
• PTSD and growth
• Family functioning
• Social support
• Burden of care
• Vulnerability
• Interaction and attachment
•Psychological distress
• Financial consequences
• Social outcome
• Daily activities
• Medical traumatic stress
• Satisfaction with care
• Advice and referrals
• Knowledge
• Communication
• Awareness
Child
Family
Medical
context
Background Intermediating Outcome
• Age at diagnosis
• Duration of treatment
• Treatment
• Relapse
• Late effects
Direct and indirect effect; Not all-inclusive
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What do we know about Children?
• Resilience is the rule rather than the exception
• Children slightly elevated risk of psychosocial distress, although only a minority experience clinical symptomatology.
• Siblings showed that they are at risk from a number of negative effects.
Barlow JH, Ellard DR. The psychosocial well-being of children with chronic disease, their parents and siblings: an
overview of the research evidence base. Child Care Health Dev. 2006 Jan;32(1):19-31. Review
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What do we know about Parents?
• Relatively little research on psychosocial functioning of parents with a chronically ill child
• Consequences of having a chronically ill child:
• More symptoms of burn-out
• Tension (Lindström, Aman & Norberg, 2009)
• Little time for daily events and social activities (Murphy, Christian, Caplin & Young, 2006)
• High parental stress predicts adaptation of the child to the illness (Wolfe-Christensen, et al., 2010)
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Hatzmann, J. et al. Pediatrics 2008;122:e1030-e1038
HRQoL impairment based on percentages of parents scoring below the 25th percentile of the comparison group
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What do we know about predictors?
• Non-medical factors, such as self-esteem, social support, coping are most important predictors of psychosocial outcome
• Medical determinants, such as illness severity, matter but not the most
• We found that being at risk (high anxiety/depression) does not depend on characteristics of the child’s disease
• Calls for psychosocial screening and targeted interventions in pediatrics
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Clinical/Treatment
Targeted
Universal
Pediatric Psychosocial Preventative
Health Model
Provide general support – help family help themselves Provide information and support. Screen for indicators of higher risk
• Persistent and/or escalating distress • High risk factors Consult behavioral health
specialist
Provide intervention and services specific to symptoms. Monitor distress.
• Acute distress • Risk factors present
• Children and families are distressed but resilient
© 2005, Center for Pediatric Traumatic Stress (CPTS, Anne E. Kazak, Ph.D., ABPP, Director) The Children’s Hospital of Philadelphia
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What is necessary?
• Interventions should be framed to promote competence rather than reduce psychopathology
• Pay attention to child in development
• Focus on vulnerable groups
• Throughout the medical treatment trajectory
• Internet is a promising gate-way
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E- mental health
• defined as the delivery of mental health services and information through the internet and related technologies.
• It develop d extremely over the past years, with most e-health interventions focussing on adults
• Internet provides direct access to interventions
• Especially helpful to people with less serious symptoms
• Bridging distance
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E-mental health & children
• For children the use of the computer and internet is part of their daily life.
• Internet could increase participation of adolescents
• Adolescents seem to disclose more problems in online therapies compared to face-to-face interventions.
• E-Health in pediatric psychology is still lacking behind and must address numerous challenges.
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Patient Reported Outcomes in clinical practise
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• Sociodemografic
• Environmental issues
•Premorbide functioning
• Personality
• Internal resources
• Premorbid functioning
• Coping, self managem.
• Attention/memory
• Executive functioning
• Optimism
• Illness perception
• Quality of life
• School functioning
• Anxiety & depression
• Behavioral problems
• PTSD and growth
• Social support
• Burden of care
• Vulnerability
• Interaction and attachment
• Family functioning
• Psychological distress
• Financial consequences
• Social outcome
• Daily activities
• Medical traumatic stress
• Satisfaction with care
• Advice and referrals
• Knowledge
• Communication
• Awareness
Child
Family
Medical
context
Background Intermediating Outcome
• Age at diagnosis
• Duration of treatment
• Treatment
• Relapse
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No systematic attention for HRQOL problems in
clinical practice
Patient Reported Outcomes (PROs)
HRQOL in clinical practice
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• Increase communication HRQOL topics (Detmar et al. 2002)
•Improve HRQOL (Velikova et al.2004, de Wit et al. 2008, Gutterling et al. 2008)
• Increase satisfaction with care (de Wit et al. 2008)
What do we know about Patient Reported
Outcomes in clinical pratice?
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Aims: Qlic-on and KLIK
•Determine if PROs on HRQOL (PROfile) help the paediatrician identify HRQOL problems •Determine if PROs on HRQOL (PROfile) help the paediatrician discuss HRQOL topics • Determine if PROs on HRQOL (PROfile) makes the children, parents and paediatricians more satisfied about the consultation
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KLIK PROfile
Haverman L, Engelen V, Van Rossum MA, Heymans HS, Grootenhuis MA. Monitoring health-related quality of life in paediatric practice:
development of an innovative web-based application. BMC Pediatr 2011
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Summarising both studies:
• Emotional and social problems more often discussed and detected
• Physicians (KLIK JIA) are more satisfied about the consultation
• The consultation does not last longer by using the PROfile (-3 min)
• Parents rate the PROfile with an 8
Engelen V, Haverman L, Koopman H, Schouten-van MN, Meijer-van den Bergh E, Vrijmoet-Wiersma J, et al. Development and implementation
of a patient reported outcome intervention (QLIC-ON PROfile) in clinical paediatric oncology practice. Patient Educ Couns 2010
Engelen V, Detmar S, Koopman H, Maurice-Stam H, Caron H, Hoogerbrugge P, et al. Reporting health-related quality of life scores to physicians during routine follow-up visits of pediatric oncology patients: Is it effective? Pediatr Blood Cancer 2011 L Haverman, MAJ van Rossum, M van Veenendaal, JM van den Berg, K.M. Dolman, J.Swart, TW Kuijpers, and MA Grootenhuis. The
effectiveness of a web-based application to monitor HRQOL, submitted
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QLIC-ON study:
- Oncology
- 4 centres
- at outpatient clinic
KLIK study:
- Rheumatology
- 4 centres
- at outpatient clinic
through internet
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KLIK PROfile: implementation in clinical practice
• Communication tool
• Supplement or guideline to consultation • QoL ‘lab-outcome’ • Extention of information: subjective vision of the child • Targeted advice and referal • Doctor is not a psychologist, but gatekeeper
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WWW.HETKLIKT.NU WHO USES PROFILE?WHO GIVES INFORMATION?
PEDIATRICIAN
NURSE
PSYCHOLOGIST
SOCIAL WORKER
PHYSIOTHERAPIST
EDUCTIONAL FACILITY
THE CHILD
THE PARENT
About the child
About themselves
THE TEACHER
About the child
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The website: www.hetklikt.nu
Possible to enter in English
Username: PRO
Password: KLIK
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Psychosocial Interventions
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What is necessary?
• Interventions should be framed to promote competence rather than reduce psychopathology
• Preventative interventions are generally promising (e.g. Plante, 2001).
• These interventions focus on coping, given the role of coping in moderating the effect of chronic illness
Plante WA, Lobato D, Engel R: Review of group interventions for pediatric chronic
conditions. Journal of Pediatric Psychology 2001, 26: 435-453.
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• Sociodemografic
• Environmental issues
•Premorbide functioning
• Personality
• Internal resources
• Premorbid functioning
• Coping, self managem.
•Optimism
• Illness perception
• Quality of life
• School functioning
• Anxiety & depression
• Behavioral problems
• PTSD and growth
• Social support
• Burden of care
• Vulnerability
• Interaction and
attachment
• Family functioning
• Psychological distress
• Financial consequences
• Social outcome
• Daily activities
• Medical traumatic stress
• Satisfaction with care
• Advice and referrals
• Knowledge
• Communication
• Awareness
Child
Family
Medical
context
Background Intermediating Outcome
• Age at diagnosis
• Duration of treatment
• Treatment
• Relapse
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• information seeking and information giving about the disease use of relaxation during stressful situations
• increase knowledge of self-management and compliance
• enhancement of social competence
• positive thinking
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Op Koers Program
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Ages:
• 8-12 years (primary school)
• 12-18 years (secondary school)
Versions: cancer, chronic disease and siblings
Phases: face-to-face (Op Koers, Samen op Koers) and Online
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Development Op Koers Program
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Neuropsychological interventions
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• Sociodemografic
• Environmental issues
•Premorbide functioning
• Personality
• Internal resources
• Premorbid functioning
• Coping, self managem.
• Attention/memory
• Executive functioning
• Optimism
• Illness perception
• Quality of life
• School functioning
• Anxiety & depression
• Behavioral problems
• PTSD and growth
• Social support
• Burden of care
• Vulnerability
• Interaction and attachment
• Family functioning
• Psychological distress
• Financial consequences
• Social outcome
• Daily activities
• Medical traumatic stress
• Satisfaction with care
• Advice and referrals
• Knowledge
• Communication
• Awareness
Child
Family
Medical
context
Background Intermediating Outcome
• Age at diagnosis
• Duration of treatment
• Treatment
• Relapse
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Neuropsychological problems
• As a result of the disease
• As a result of the treatment
• Populations at risk: e.g. brain tumour patients, sickle cell disease (SCD), low-birth-weight
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- Mental slowness
- Visuomotor problems
- Attention problems
- Memory problems
- Executive function problems
(planning, organisation, shifting,
monitoring)
-- has impact on academic achievement,
HRQoL, social functioning,
Neuropsychological consequences
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Intervention studies in childhood
cancer survivors
• Stimulant medication - methylphenidate (Thompson et al.,
2001)
• Amsterdam training attention and memory- children ATAG-
K/ AMAT-C (Hagberg - Van ‘t Hooft, 2006; Hendriks)
• Cognitive rehabilitation program (Butler et al, 2008)
ADHD:
• Stimulant medication – methylphenidate
• Increasing interest in NEUROFEEDBACK treatment
(Heinrich 2007, Monastra et al 2002, Rossiter 2004)
• positive results NFB: epilepsy, acquired brain injury and
dyslexia
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What is next?
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Whats more and necessary……..
• The adolescents and young adults (AYAs)
• ACTION: activating autonomy and transition
• Family functioning as important predictor
• Online intervention programs, the media
• Serious gaming
• using apps
• Promoting resilience programs
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To Improve finding evidence
We need larger studies We will need to use comparable outcomes - instruments PROMIS: develop valid, reliable, and standardized questionnaires or tools to measure patient–reported outcomes (PROs): http://www.nihpromis.org/
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Acknowledgement
Many thanks to the patients, families and
colleagues who have contributed to this work
over many years
The work described in this presentation was funded, in part, by:
ZONMW, Maag Lever Darm Stichting (MLD), Dutch Cancer Society, KIKA, Roparun, TVF, AGIS, Nierstichting
for information