the need for innovative (neuro)psychological interventions...chief research section psychosocial...

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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

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?

• 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

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

• 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

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

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)

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

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

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

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

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

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

• Sociodemografic


•Premorbide functioning

• Personality






• Optimism


• Quality of life




• PTSD and growth

• Social support

• Burden of care

• Vulnerability



• Psychological distress


• Social outcome





• Knowledge

• Communication

• Awareness

Child

Family

Medical

context




• Treatment

• Relapse

No systematic attention for HRQOL problems in

clinical practice

Patient Reported Outcomes (PROs)

HRQOL in clinical practice

• 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?

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

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

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

QLIC-ON study:

- Oncology

- 4 centres

- at outpatient clinic

KLIK study:

- Rheumatology

- 4 centres

- at outpatient clinic

through internet

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

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

The website: www.hetklikt.nu

[email protected]

Possible to enter in English

Username: PRO

Password: KLIK

http://www.hetklikt.nu/

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Psychosocial Interventions

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.

• Sociodemografic



• Personality




•Optimism


• Quality of life




• PTSD and growth

• Social support

• Burden of care

• Vulnerability

• Interaction and

attachment




• Social outcome





• Knowledge

• Communication

• Awareness

Child

Family

Medical

context




• Treatment

• Relapse

• 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

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

• Sociodemografic



• Personality






• Optimism


• Quality of life




• PTSD and growth

• Social support

• Burden of care

• Vulnerability





• Social outcome





• Knowledge

• Communication

• Awareness

Child

Family

Medical

context




• Treatment

• Relapse

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

- 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

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?

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/

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

[email protected]

mailto:[email protected]

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