Pediatric Psycho-Oncology

1. Pediatric Psycho-Oncology Resident Education Lecture Series

2. Cognitive & Behavioral Aspects of Pediatric Cancer • 1960-1970’s: Survival • improved chemotherapy, CNS prophylaxis • 1980’s: Survival, Cognitive Functioning • improved chemotherapy, modified CNS treatment • 1990’s-present: Survival, Cognitive Functioning, Quality of Life • improved assessment, focus on academic & psychosocial functioning over time, focus on development of interventions

3. 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

4. Common Cognitive Impairments/Late Effects • Decline in intellectual functioning • age & dose related • Memory problems (short-term) • Attention/concentration difficulties • Slower processing speed • Visual-spatial/motor problems • Arithmetic & other learning problems • Problems in executive functioning (working memory, behavioral inhibition, self-monitoring, self-regulation, organization & planning, cognitive flexibility/shifting)

5. Current Cognitive Interventions • 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)

6. Cognitive Functioning in Pediatric Blood & Marrow Transplant (BMT) • Are pediatric BMT patients at greater risk of developing cognitive problems due to…. • Myeloblative chemotherapy? • Total body irradiation? • Treatment history?

7. Cognitive Functioning in Pediatric BMT: Longitudinal Studies • No significant IQ changes at 1 & 2 years • Phipps et al., 2000; Simms et al., 2002 • Correlates: • pre-BMT functioning, • age at BMT, • diagnosis, • TBI dose, • length of time since BMT, • Rx regimen, • gender

8. MCW Transplant Study Kupst et al. (2002) • No significant changes in IQ over two years • IQ scores were within normal limits • No significant changes in Reading or Math Achievement • Predictors of Cognitive Outcome: SES, Pre-BMT IQ, Prior Academic Problems • Not significantly related: age, previous treatment, GVHD status, TBI • Cognitive Development (<3 yrs): no pattern • 5+ yr follow-up study funded by HSK

9. Psychosocial Functioning in Childhood Cancer • Longitudinal research indicates that most children & families are resilient to cancer diagnosis & treatment. • Coping is a process • Wide variety of coping strategies (no single best way) • However, 20-30% develop clinically significant adjustment problems (i.e., anxiety, depression) that may require intervention.

10. Disease Factors Rx intensity Severity of late effects & functional impairment in survivors Visibility of disease or Rx effect Duration of disease/time since Dx Degree of CNS involvement Personal Factors Age (mixed results) Cognitive & academic functioning (brain tumors) Prior psychosocial functioning Personality/temperament Family/Environmental Family resources/SES Support system Family variables: adaptability, communication, cohesiveness, Parental, parent-child & sibling coping Concurrent stressors Coping and Adaptation in Pediatric Cancer

11. Natural Reactions to Cancer Journey • Diagnosis-Early Treatment: • shocked, overwhelmed, info overload, emotional distress, why me?, blaming of self or others, questions/worries about death, isolation, missing school & friends, coping with changes in daily life, finances, job, & caregiving roles, difficulty asking others for help, some experience anticipatory anxiety/procedural distress. • Middle to Later Treatment: • increased sense of control, Rx regimen becomes more routine, process thoughts & feelings, grieve loss of normal life/activities, sadness-anger re: limitations, feelings of abandonment/reduced support, coping with altered friendships

12. Natural Reactions to Cancer Journey • End of Treatment: • ambivalent feelings, uncertainty about future, transition back to school/work, focus on rebuilding vs. returning to life, worries about relapse • Survivorship Concerns • physical & cognitive late effects, concerns of relapse/secondary cancer, difficulty identifying/connecting with peers, future health concerns/choices • Death/Dying

13. Infancy-Preschool Yrs: adjustment to Rx with limited cognitive understanding loss of control fears of abandonment/separation developmental regression/interruption behavioral reactions Rx regimen becomes “normal” Coping: problem-focused, action-oriented, distraction School-Aged: isolated from peers missed school understands seriousness awareness of physical changes/feeling different Coping: development of emotion-focused Impact of Pediatric Cancer: Developmental Issues

14. Impact of Pediatric Cancer: Developmental Issues Adolescents & Young Adults: • disruptions in school & social activities • isolation • difficulty identifying with care-free friends • self-image problems • sense of invulnerability (compliance issues) • more intense emotional reactions, distress, existential issues • independence-dependence parent-child struggle • Young Adults: may have to postpone college, work, marriage, family • Coping: use of social support, emotion-focused, cognitive strategies, info-seeking

15. Parents/Caregivers impact often is more intense & distressing (post-traumatic stress Sx) fears & worries about child’s acute & long-term survival guilt feelings with limit setting parental adjustment strongly related to child adjustment Siblings feel forgotten/passed off jealous of patient’s attention acting out/negative-attention seeking guilt feelings sadness & anger mild somatic symptoms Family Adjustment Issues

16. Psychosocial Functioning: BMT • Regression, withdrawal & decrease in mood are natural reactions to long-term isolation/hospitalization & physical discomfort • Longitudinal studies indicate PTSD Sx, lower self-competence & self-esteem, withdrawal during 1st yr • BUT psychosocial adjustment & QOL tend to improve or return to baseline by one yr post-BMT • Correlates: pre-BMT child & family adjustment, time since BMT, level of maternal distress, type of Rx (TBI) (Barrera et al., 2000; Debban et al., 1998; Phipps & Mulhern, 1995; Simms et al., 2002; Stuber & Nader, 1995; Vannata et al., 1998)

17. MCW BMT Study:Kupst et al. (2002) • No significant behavioral or social changes over time • Psychosocial functioning significantly correlated with prior behavioral and social scores • Behavioral scores not related to age, gender, SES, diagnosis or type of treatment • Social competence significantly correlated with age (older, higher) at one year, but not at two years

18. What is Pediatric Psychology? • AKA: child health psychology, behavioral medicine/pediatrics, medical psychology • Refers to interdisciplinary field that addresses the psychological well-being of children, adolescents, and their families with health and illness issues. • Pediatric Psycho-Oncology address the psychosocial needs of pediatric cancer patients and their families.

19. What Do Hem/Onc/Transplant Psychology Do? • Provide consultation, evaluation, psychological testing, and intervention to children, adolescents, young adults, and families who have been affected by cancer and other blood disorders. • Help pediatric patients and their families cope with the stress of a cancer diagnosis and treatment.

20. Adjustment difficulties (emotional & behavioral reactions) Anxiety, panic attack symptoms Depression Behavioral disturbances (oppositionality, noncompliance) Premorbid mental health issues impacting psychological well-being and medical care Crisis intervention Nonadherence to medical regimen Anticipatory anxiety & nausea/Procedural distress Needle phobia Parent adjustment Sibling reactions Family conflict Survivorship issues post treatment Reasons to Consult HOT Psychology

21. Intervention 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.

22. 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.

23. 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.

24. 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.

25. 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.

26. 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.

27. To initiate psychology services for a patient in the HOT Unit, inpatient or outpatient: Create a formal consult using Sunrise. There are several groups of psychologists serving this hospital, so make sure you are consulting the HOT psychologists. Alpha page Dr. Kristin Bingen to inform her of the consult. The group of psychologists for HOT will then triage the consult and notify you of our plan to proceed. How to Consult Psychology

28. To communicate additional concerns, questions, or information to a psychologist already working with a patient: • Contact that psychologist directly. There is no need to create another formal consult. • For crisis intervention: • During regular working hours, page Dr. Kristin Bingen. If she is not in, page either Dr. Mary Jo Kupst or Dr. Suzanne Holm to find out who is covering. • After hours, page psychiatry, as there is someone there on-call at all times. Then follow-up with psychology the next working day.

29. References/Resources • Institute of Medicine (2003). Childhood cancer survivorship: Improving care and quality of life. National Academies Press, Washington, DC. • Keene, N., et al. (2000) Childhood Cancer Survivors. Sepastopol CA: O’Reilly Associates, Inc. • Kupst MJ & Bingen, K. (2006) Stress and coping in the pediatric cancer experience. In R. T. Brown (Ed.) Pediatric hematology/oncology: A biopsychosocial approach. New York: Oxford University Press. • Patenaude, AF & Kupst MJ (Eds.) (2005) Special Issue on Surviving Pediatric Cancer: Research Gains and Goals. Journal of Pediatric Psychology, volume 30. • Woznick, LA & Goodheart CD (2002). Living with childhood cancer: A practical guide to help families cope. Washington DC: APA.

30. Current Psychology Research Projects • “Trajectories of Health and Adaptation after Pediatric Stem Cell Transplant”, American Cancer Society • “Psychosocial Outcomes of Pediatric Brain Tumors”, American Cancer Society • “Cognitive and Psychosocial Functioning of Long-term Survivors of Pediatric Hematopoietic Stem Cell Transplant” Hope Street Kids Foundation • LTFU • LAF • MACC Fund

32. From ABP Certifying 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

33. From ABP 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

34. Credits Mary Jo Kupst, PhD, Professor of Pediatrics Kristin Bingen, PhD, Assistant Professor Suzanne Holm, PhD, Psychology Fellow Medical College of Wisconsin Children’s Hospital of Wisconsin