Pediatric Pediatric Psycho-OncologyPsycho-Oncology

Resident Education Resident Education Lecture SeriesLecture Series

Cognitive & Behavioral Cognitive & Behavioral Aspects of Pediatric CancerAspects of Pediatric Cancer

1960-1970’s:1960-1970’s: SurvivalSurvival improved chemotherapy, CNS prophylaxisimproved chemotherapy, CNS prophylaxis

1980’s:1980’s: Survival, Cognitive FunctioningSurvival, Cognitive Functioning improved chemotherapy, modified CNS treatmentimproved chemotherapy, modified CNS treatment

1990’s-present: Survival, Cognitive 1990’s-present: Survival, Cognitive Functioning, Quality of Life Functioning, Quality of Life

improved assessment, focus on academic & improved assessment, focus on academic & psychosocial functioning over time, focus on psychosocial functioning over time, focus on development of interventionsdevelopment of interventions

Cognitive Risk Factors in Pediatric Cancer

Brain tumor CNS disease Cranial irradiation (dose effect) Child’s age (young children at greater risk) Time since end of treatment Intrathecal chemotherapy

systemic chemo to lesser degree

Frequent school absences

Common Cognitive Common Cognitive Impairments/Late EffectsImpairments/Late Effects Decline in intellectual functioningDecline in intellectual functioning

age & dose relatedage & dose related Memory problems (short-term)Memory problems (short-term) Attention/concentration difficultiesAttention/concentration difficulties Slower processing speedSlower processing speed Visual-spatial/motor problemsVisual-spatial/motor problems Arithmetic & other learning problemsArithmetic & other learning problems Problems in executive functioning Problems in executive functioning

(working memory, behavioral inhibition, (working memory, behavioral inhibition, self-monitoring, self-regulation, organization & self-monitoring, self-regulation, organization & planning, cognitive flexibility/shifting)planning, cognitive flexibility/shifting)

Current Cognitive Current Cognitive InterventionsInterventions Serial assessment of cognitive functioning School consultation, education, and services

504 plan for accommodations/modifications special education services/IEP (OHI, CD, LD)

Tutoring to learn compensatory strategies Cognitive remediation?? (Butler & Copeland, 2002) Medication, e.g. methylphenidate, for

attention/concentration & executive functioning difficulties??? (Butler & Mulhern, 2005)

Cognitive Functioning in Cognitive Functioning in Pediatric Blood & Marrow Pediatric Blood & Marrow Transplant (BMT)Transplant (BMT)

Are pediatric BMT patients at greater risk Are pediatric BMT patients at greater risk of developing cognitive problems due of developing cognitive problems due to….to…. Myeloblative chemotherapy?Myeloblative chemotherapy? Total body irradiation?Total body irradiation? Treatment history?Treatment history?

Cognitive Functioning in Cognitive Functioning in Pediatric BMT: Longitudinal Pediatric BMT: Longitudinal StudiesStudies

No significant IQ changes at 1 & 2 yearsNo significant IQ changes at 1 & 2 years Phipps et al., 2000; Simms et al., 2002Phipps et al., 2000; Simms et al., 2002

Correlates: Correlates: pre-BMT functioning, pre-BMT functioning, age at BMT, age at BMT, diagnosis, diagnosis, TBI dose, TBI dose, length of time since BMT, length of time since BMT, Rx regimen, Rx regimen, gendergender

MCW Transplant Study MCW Transplant Study Kupst et al. (2002)Kupst et al. (2002)

No significant changes in IQ over two yearsNo significant changes in IQ over two years IQ scores were within normal limitsIQ scores were within normal limits No significant changes in Reading or Math No significant changes in Reading or Math

AchievementAchievement Predictors of Cognitive Outcome: SES, Pre-BMT Predictors of Cognitive Outcome: SES, Pre-BMT

IQ, Prior Academic ProblemsIQ, Prior Academic Problems Not significantly related: age, previous Not significantly related: age, previous

treatment, GVHD status, TBItreatment, GVHD status, TBI Cognitive Development (<3 yrs): no patternCognitive Development (<3 yrs): no pattern 5+ yr follow-up study funded by HSK5+ yr follow-up study funded by HSK

Psychosocial Functioning in Psychosocial Functioning in Childhood CancerChildhood Cancer Longitudinal research indicates that Longitudinal research indicates that most most

children & families are resilient to cancer children & families are resilient to cancer diagnosis & treatment.diagnosis & treatment. Coping is a processCoping is a process Wide variety of coping strategies Wide variety of coping strategies

(no single best way)(no single best way)

However, 20-30% develop clinically significant However, 20-30% develop clinically significant adjustment problems (i.e., anxiety, depression) adjustment problems (i.e., anxiety, depression) that may require intervention.that may require intervention.

Coping and Adaptation in Coping and Adaptation in

Pediatric CancerPediatric Cancer Disease FactorsDisease Factors

Rx intensityRx intensity Severity of late effects & Severity of late effects &

functional impairment in functional impairment in survivorssurvivors

Visibility of disease or Rx Visibility of disease or Rx effecteffect

Duration of disease/time Duration of disease/time since Dxsince Dx

Degree of CNS involvementDegree of CNS involvement

Personal FactorsPersonal Factors Age (mixed results)Age (mixed results) Cognitive & academic functioning Cognitive & academic functioning

(brain tumors)(brain tumors) Prior psychosocial functioningPrior psychosocial functioning Personality/temperamentPersonality/temperament

Family/EnvironmentalFamily/Environmental Family resources/SESFamily resources/SES Support systemSupport system Family variables: adaptability, Family variables: adaptability,

communication, cohesiveness,communication, cohesiveness, Parental, parent-child & sibling Parental, parent-child & sibling

copingcoping Concurrent stressorsConcurrent stressors

NaturalNatural Reactions to Cancer Reactions to Cancer JourneyJourney Diagnosis-Early Treatment:Diagnosis-Early Treatment:

shocked, overwhelmed, info overload, emotional shocked, overwhelmed, info overload, emotional distress, why me?, blaming of self or others, distress, why me?, blaming of self or others, questions/worries about death, isolation, missing school questions/worries about death, isolation, missing school & friends, coping with changes in daily life, finances, & friends, coping with changes in daily life, finances, job, & caregiving roles, difficulty asking others for help, job, & caregiving roles, difficulty asking others for help, some experience anticipatory anxiety/procedural some experience anticipatory anxiety/procedural distress.distress.

Middle to Later Treatment:Middle to Later Treatment: increased sense of control, Rx regimen becomes more increased sense of control, Rx regimen becomes more

routine, process thoughts & feelings, grieve loss of routine, process thoughts & feelings, grieve loss of normal life/activities, sadness-anger re: limitations, normal life/activities, sadness-anger re: limitations, feelings of abandonment/reduced support, coping with feelings of abandonment/reduced support, coping with altered friendshipsaltered friendships

NaturalNatural Reactions to Cancer Reactions to Cancer JourneyJourney End of Treatment:End of Treatment:

ambivalent feelings, uncertainty about future, ambivalent feelings, uncertainty about future, transition back to school/work, focus on rebuilding transition back to school/work, focus on rebuilding vs. returning to life, worries about relapsevs. returning to life, worries about relapse

Survivorship ConcernsSurvivorship Concerns physical & cognitive late effects, concerns of physical & cognitive late effects, concerns of

relapse/secondary cancer, difficulty relapse/secondary cancer, difficulty identifying/connecting with peers, future health identifying/connecting with peers, future health concerns/choicesconcerns/choices

Death/DyingDeath/Dying

Impact of Pediatric Impact of Pediatric Cancer: Developmental Cancer: Developmental IssuesIssuesInfancy-Preschool YrsInfancy-Preschool Yrs:: adjustment to Rx with limited adjustment to Rx with limited

cognitive understandingcognitive understanding loss of controlloss of control fears of abandonment/separationfears of abandonment/separation developmental developmental

regression/interruptionregression/interruption behavioral reactionsbehavioral reactions Rx regimen becomes “normal”Rx regimen becomes “normal” Coping: problem-focused, Coping: problem-focused,

action-oriented, distractionaction-oriented, distraction

School-Aged:School-Aged: isolated from peersisolated from peers missed schoolmissed school understands understands

seriousnessseriousness awareness of physical awareness of physical

changes/feeling changes/feeling differentdifferent

Coping: development Coping: development of emotion-focusedof emotion-focused

Impact of Pediatric Cancer: Impact of Pediatric Cancer: Developmental IssuesDevelopmental IssuesAdolescents & Young Adults:Adolescents & Young Adults: disruptions in school & social activitiesdisruptions in school & social activities isolationisolation difficulty identifying with care-free friendsdifficulty identifying with care-free friends self-image problemsself-image problems sense of invulnerability (compliance issues)sense of invulnerability (compliance issues) more intense emotional reactions, distress, existential more intense emotional reactions, distress, existential

issuesissues independence-dependence parent-child struggleindependence-dependence parent-child struggle Young Adults: may have to postpone college, work, Young Adults: may have to postpone college, work,

marriage, familymarriage, family Coping: use of social support, emotion-focused, cognitive Coping: use of social support, emotion-focused, cognitive

strategies, info-seekingstrategies, info-seeking

Family Adjustment IssuesFamily Adjustment Issues

Parents/CaregiversParents/Caregivers impact often is more impact often is more

intense & distressing intense & distressing (post-traumatic stress Sx)(post-traumatic stress Sx)

fears & worries about fears & worries about child’s acute & long-term child’s acute & long-term survivalsurvival

guilt feelings with limit guilt feelings with limit settingsetting

parental adjustment parental adjustment strongly related to child strongly related to child adjustmentadjustment

SiblingsSiblings feel forgotten/passed feel forgotten/passed

offoff jealous of patient’s jealous of patient’s

attentionattention acting out/negative-acting out/negative-

attention seekingattention seeking guilt feelingsguilt feelings sadness & angersadness & anger mild somatic mild somatic

symptomssymptoms

Psychosocial Psychosocial Functioning: BMTFunctioning: BMT

Regression, withdrawal & decrease in mood are natural Regression, withdrawal & decrease in mood are natural reactions to long-term isolation/hospitalization & reactions to long-term isolation/hospitalization & physical discomfortphysical discomfort

Longitudinal studies indicate PTSD Sx, lower self-Longitudinal studies indicate PTSD Sx, lower self-competence & self-esteem, withdrawal during 1competence & self-esteem, withdrawal during 1stst yr yr

BUT psychosocial adjustment & QOL tend to improve or BUT psychosocial adjustment & QOL tend to improve or return to baseline by one yr post-BMTreturn to baseline by one yr post-BMT

Correlates: pre-BMT child & family adjustment, time Correlates: pre-BMT child & family adjustment, time since BMT, level of maternal distress, type of Rx (TBI) since BMT, level of maternal distress, type of Rx (TBI) ((Barrera et al., 2000; Debban et al., 1998; Phipps & Mulhern, 1995; Barrera et al., 2000; Debban et al., 1998; Phipps & Mulhern, 1995; Simms et al., 2002; Stuber & Nader, 1995; Vannata et al., 1998)Simms et al., 2002; Stuber & Nader, 1995; Vannata et al., 1998)

MCW BMT Study:MCW BMT Study:Kupst et al. (2002)Kupst et al. (2002) No significant behavioral or social changes over No significant behavioral or social changes over

timetime Psychosocial functioning significantly correlated Psychosocial functioning significantly correlated

with prior behavioral and social scoreswith prior behavioral and social scores Behavioral scores not related to age, gender, Behavioral scores not related to age, gender,

SES, diagnosis or type of treatmentSES, diagnosis or type of treatment Social competence significantly correlated with Social competence significantly correlated with

age (older, higher) at one year, but not at two age (older, higher) at one year, but not at two yearsyears

What What isis Pediatric Psychology? Pediatric Psychology?

AKA: child health psychology, behavioral AKA: child health psychology, behavioral medicine/pediatrics, medical psychologymedicine/pediatrics, medical psychology

Refers to interdisciplinary field that Refers to interdisciplinary field that addresses the psychological well-being of addresses the psychological well-being of children, adolescents, and their families children, adolescents, and their families with health and illness issues.with health and illness issues.

Pediatric Psycho-Oncology address the Pediatric Psycho-Oncology address the psychosocial needs of pediatric cancer psychosocial needs of pediatric cancer patients and their families.patients and their families.

What Do What Do Hem/Onc/Transplant Hem/Onc/Transplant PsychologyPsychology Do? Do?

Provide consultation, evaluation, psychological Provide consultation, evaluation, psychological testing, and intervention to children, testing, and intervention to children, adolescents, young adults, and families who adolescents, young adults, and families who have been affected by cancer and other blood have been affected by cancer and other blood disorders.disorders.

Help pediatric patients and their families cope Help pediatric patients and their families cope with the stress of a cancer diagnosis and with the stress of a cancer diagnosis and treatment.treatment.

Reasons to Consult HOT Reasons to Consult HOT PsychologyPsychology• Adjustment difficulties Adjustment difficulties

(emotional & behavioral (emotional & behavioral reactions)reactions)

• Anxiety, panic attack Anxiety, panic attack symptomssymptoms

• DepressionDepression• Behavioral disturbances Behavioral disturbances

(oppositionality, (oppositionality, noncompliance)noncompliance)

• Premorbid mental health Premorbid mental health issues impacting issues impacting psychological well-being psychological well-being and medical careand medical care

Crisis interventionCrisis intervention Nonadherence to Nonadherence to

medical regimenmedical regimen Anticipatory anxiety & Anticipatory anxiety &

nausea/Procedural nausea/Procedural distressdistress

Needle phobiaNeedle phobia Parent adjustmentParent adjustment Sibling reactionsSibling reactions Family conflictFamily conflict Survivorship issues post Survivorship issues post

treatmenttreatment

Intervention ServicesIntervention Services

Psychologists provide both inpatient and outpatient services.

Primary goals are to provide support, reduce stress, improve coping, and facilitate normalcy.

These goals are met through consultation/assessment, behavioral interventions, therapy, psychological testing, and school and community liaison.

Intervention Services, cont.Intervention Services, cont.

1 - CONSULTATION / ASSESSMENT

Learn about the problem through interviews with patient, family, and staff, and/or through observation of patient.

Make recommendations for treatment and provide resources.

May take from ½ hour to 2 hours.

Intervention Services, cont.Intervention Services, cont.

2 - BEHAVIORAL INTERVENTION

Help patient with medical issues, such as managing pain/stress, coping with procedural distress, taking medications, complying with treatment regiment.

Interventions often consist of outlined plans for behavioral modification. Support of the medical team, family, and caregivers in following these plans is very important for the success of the patient.

Intervention Services, cont.Intervention Services, cont.3 - THERAPY Help patients, family members, or

caregivers examine their thoughts, feelings, and behaviors related to illness and treatment and learn strategies to cope more effectively. Provide support.

Average length of therapy is 6 sessions, but may vary depending on issues discussed.

Intervention Services, cont.Intervention Services, cont.

4 - PSYCHOLOGICAL TESTING

Determine patient’s level of cognitive, academic, behavioral and emotional functioning in order to evaluate the impact of treatment, identify problems/strengths, monitor changes, provide directions for intervention, and provide information for school services.

Conduct psychological evaluations of all pediatric bone marrow and stem cell candidates and sibling donors.

Intervention Services, cont.Intervention Services, cont.5 - SCHOOL AND COMMUNITY LIAISON Help the family and school work together

to ensure all patient’s academic support needs are being met during and after treatment.

Educate school personnel on possible limitations during treatment and/or cognitive late effects of treatment.

How to Consult PsychologyHow to Consult Psychology

To initiate psychology services for a patient To initiate psychology services for a patient in the HOT Unit, inpatient or outpatient:in the HOT Unit, inpatient or outpatient: Create a formal consult using Sunrise. Create a formal consult using Sunrise.

There are several groups of psychologists serving this There are several groups of psychologists serving this hospital, so make sure you are consulting the HOT hospital, so make sure you are consulting the HOT psychologists.psychologists.

Alpha page Dr. Kristin Bingen to inform her of the Alpha page Dr. Kristin Bingen to inform her of the consult.consult.

The group of psychologists for HOT will then triage the The group of psychologists for HOT will then triage the consult and notify you of our plan to proceed.consult and notify you of our plan to proceed.

To communicate additional concerns, To communicate additional concerns, questions, or information to a psychologist questions, or information to a psychologist already working with a patient:already working with a patient: Contact that psychologist directly. There is no need Contact that psychologist directly. There is no need

to create another formal consult.to create another formal consult. For crisis intervention:For crisis intervention:

During regular working hours, page Dr. Kristin During regular working hours, page Dr. Kristin Bingen. Bingen. If she is not in, page either Dr. Mary Jo Kupst or Dr. If she is not in, page either Dr. Mary Jo Kupst or Dr. Suzanne Holm to find out who is covering.Suzanne Holm to find out who is covering.

After hours, page psychiatry, as there is someone After hours, page psychiatry, as there is someone there on-call at all times. Then follow-up with there on-call at all times. Then follow-up with psychology the next working day.psychology the next working day.

References/ResourcesReferences/Resources Institute of Medicine (2003). Institute of Medicine (2003). Childhood cancer survivorship: Childhood cancer survivorship:

Improving care and quality of life.Improving care and quality of life. National Academies Press, National Academies Press, Washington, DC.Washington, DC.

Keene, N., et al. (2000) Keene, N., et al. (2000) Childhood Cancer Survivors.Childhood Cancer Survivors. Sepastopol Sepastopol CA: O’Reilly Associates, Inc.CA: O’Reilly Associates, Inc.

Kupst MJ & Bingen, K. (2006) Stress and coping in the pediatric Kupst MJ & Bingen, K. (2006) Stress and coping in the pediatric cancer experience. In R. T. Brown (Ed.) cancer experience. In R. T. Brown (Ed.) Pediatric Pediatric hematology/oncology: A biopsychosocial approach.hematology/oncology: A biopsychosocial approach. New York: New York: Oxford University Press.Oxford University Press.

Patenaude, AF & Kupst MJ (Eds.) (2005) Special Issue on Surviving Patenaude, AF & Kupst MJ (Eds.) (2005) Special Issue on Surviving Pediatric Cancer: Research Gains and Goals. Pediatric Cancer: Research Gains and Goals. Journal of Pediatric Journal of Pediatric PsychologyPsychology, volume 30., volume 30.

Woznick, LA & Goodheart CD (2002). Woznick, LA & Goodheart CD (2002). Living with childhood cancer: Living with childhood cancer: A practical guide to help families cope.A practical guide to help families cope. Washington DC: APA. Washington DC: APA.

Current Psychology Current Psychology Research ProjectsResearch Projects

““Trajectories of Health and Adaptation after Trajectories of Health and Adaptation after Pediatric Stem Cell Transplant”, Pediatric Stem Cell Transplant”, American Cancer SocietyAmerican Cancer Society

““Psychosocial Outcomes of Pediatric Brain Psychosocial Outcomes of Pediatric Brain Tumors”, American Cancer Society Tumors”, American Cancer Society

““Cognitive and Psychosocial Functioning of Cognitive and Psychosocial Functioning of Long-term Survivors of Pediatric Hematopoietic Long-term Survivors of Pediatric Hematopoietic Stem Cell Transplant” Stem Cell Transplant” Hope Street Kids FoundationHope Street Kids Foundation

LTFU LTFU LAFLAF MACC FundMACC Fund

From ABP From ABP Certifying Exam Content OutlineCertifying Exam Content Outline

Chronic illness and handicapping conditions Understand the effect of a chronic illness on siblings Know that psychosocial factors are associated with but

do not cause chronic illness (e.g., asthma, seizures, inflammatory bowel disease)

Understand the importance of being supportive and non-threatening while talking with parents whose children have chronic diseases

Know the factors involved in making appropriate ethical decisions relating to children with chronic and handicapping diseases

From ABP From ABP Certifying Exam Content Outline, cont’d.Certifying Exam Content Outline, cont’d.

Death Understand that the developmental stage of a child will

have an impact on his/her response to a death in the family

Know the value of anticipatory guidance and the provision of information and support for critical life events

Identify regressive behavior and somatic complaints as signs of stress

Know how to counsel a family and child regarding the death of a loved one

Know the stages of grief and the spectrum of reactions for a child and a family when a loved one dies: shock, anger, denial, disbelief, sadness

CreditsCredits

Mary Jo Kupst, PhD, Professor of PediatricsMary Jo Kupst, PhD, Professor of Pediatrics

Kristin Bingen, PhD, Assistant Professor Kristin Bingen, PhD, Assistant Professor

Suzanne Holm, PhD, Psychology FellowSuzanne Holm, PhD, Psychology Fellow

Medical College of WisconsinMedical College of Wisconsin

Children’s Hospital of WisconsinChildren’s Hospital of Wisconsin