Pediatric Stress Management Interventions Anna Marsland, Ph.D., RN

1. Pediatric Stress Management InterventionsAnna Marsland, Ph.D., RN

2. Overview • “Connections to Coping”– for children newly diagnosed with cancer and their families • Need for intervention • Initial Phase: Developing the intervention • Feasibility Phase – Initial pilot data • Randomized clinical trial: Current funded intervention • “I Can Cope” - for children with moderate, persistent asthma • Need for intervention • Initial phase: Developing the intervention • Feasibility Phase – Initial pilot data • Where next?

3. The Connections to Coping Study Lin Ewing, Ph.D., RN, Anna Marsland, Ph.D., RN, Armando Rotondi, Ph.D, Andrew Baum, Ph.D., Jean Tersak, M.D , A. Kim Ritchey, M.D

4. 12,400 under 19 diagnosed with cancer in USA/year • Dramatic improvements in prognosis over the past 4 decades • Children’s Oncology Group estimate that survival rates have improved since the 1950s from less than 10 percent to about 77 percent overall.

5. Leukemia and Lymphoma – 5 Year Survival Rates NCI: SEER statistics

6. Coping with a Chronic Disease Current estimates - 1 in 1000 under 20 years is a survivor of childhood cancer. Shift in psychological emphasis from coping with imminent death, to coping with a chronic disease with uncertain outcome

7. Treatment Protocols • Vary, but generally include 4 phases 1. Induction of remission • Intense chemotherapy regimens until disease-free state is achieved 2. Central nervous system prophylaxis 3. Consolidation of treatment • Intensifying treatment to reduce chance of resistance to chemotherapy 4. Maintenance of treatment • Ongoing chemotherapy for 2-3 years after remission is achieved to prevent relapse.

8. Side Effects of Treatment • Alopecia (hair regrowth starts 1-3 months into maintenance) • Moon face – Cushing’s syndrome • Nausea and vomiting • Diarrhea/constipation • Low blood counts – susceptibility to infection, need for transfusions • Fatigue and weakness • Mouth and throat sores

9. Late Effects of Cancer • Growth, endocrine function, reproduction • Brain development and function • Risk of secondary malignancy • Late effects on organ function • ?? Psychological development and function

10. Impact of Childhood Cancer on Psychosocial Functioning • Unusually stressful life circumstances that can impact quality of life. • Uncontrollable and unpredictable nature of disease -- extreme chronic stressor

11. Are Children with Cancer at Psychosocial Risk? • Longitudinal studies – Overall risk for emotional and behavioral problems no greater than community norms (e.g., Sawyer et al., 1997) • But, psychological adjustment varies across individuals • Subgroup at increased risk of psychological and social adjustment problems, including depression, anxiety and social withdrawal.

12. Are Caregivers at Risk? • High levels of distress usually decline over the first year after diagnosis (e.g., Sawyer et al., 1997). BUT • 25-30% experience ongoing problems -- marital distress, loneliness, anxiety and depression (Dahlquist et al., 1996; Kupst et al., 1995; Van Dongen-Melman et al., 1995). • 35 -37% endorse moderate-severe symptoms of posttraumatic stress at least one year following treatment (Barakat et al., 1997, Manne et al., 1998).

13. Are Siblings at Risk? • Siblings may be at greater risk than the child with cancer (Cairns et al., 1979) • Symptoms include • Guilt • withdrawal, • Anxiety • jealousy • aggressiveness, • feelings of abandonment/rejection by parents • poor academic achievement • social isolation (Carr-Gregg &White, 1987).

14. Predictors of Better Psychological Adjustment among Patients • Lower perceived stress (disease-specific and non-disease related) • Higher social support (family, classmate and teacher) • Family functioning – higher cohesion and expressiveness • Higher perceived physical appearance • Lower parental distress

15. Role of Parental Adjustment • Reviews: Child’s adjustment positively associated with • Maternal adjustment • Marital/family adjustment • Family support/cohesion (Lavigne & Faier-Routman (1993). J Dev. Behav. Pediatr. 14:117 123; Drotar (1997) J. Pediatr Psychol, 22:149-165) • Prospective study: Maternal distress following diagnosis positively associated with child’s psychological adjustment 2 years later. (Sawyer et al., (1998). J. Am. Acad. Child Adolesc. Psychiatry, 37:815-822.)

16. Intervention Studies • Possible to identify modifiable vulnerability factors and target them for intervention. • Parental distress • Family function

17. Intervention Studies - Few • Kupst & Schulman, 1988: Outreach support associated with improved maternal coping in early treatment, but no differences from controls at 1, 2, or 6-8 year follow-up (J. Pediat. Psychol. 13:7-22). • Hoekstra-Weebers et al., 1998. Psychoeducational intervention in first 6 months after diagnosis found to be supportive, but no differences from standard care controls on psychological functioning or negative affect (J. Pediatr. Psychol. 23:207-214)

18. Objective of Pilot Study • To develop an intervention for children newly diagnosed with cancer and their families designed to address modifiable risk factors, including • Patient, sibling and parental stress • Social support • Family Functioning • Coping strategies/ problem-solving

19. Design of the Intervention Information used to develop the intervention was gathered from: • The literature • The Parent Advisory Group at CHP • Clinical experience at CHP • Similar interventions designed for adult patients

20. Initial Intervention • 6 sessions lasting from 60-90 minutes scheduled within the first 3 months following diagnosis • Children seen separately from parents for 45 minutes of this period. • Flexible timing of sessions to fit in with medical treatment • Order of sessions fixed

21. The Intervention

23. Feasibility Study • Subjects • 28 patients, 6-18 years and their primary caregiver(s) and any siblings within the study age range living at home • Within one month of a new diagnosis of acute lymphoblastic leukemia or lymphoma

24. Recruitment

25. Barriers to Participation • Large catchment area – separate intervention visits not feasible • Difficulty accessing family members who do not attend clinic visits • Problem findings time with flexibility • Changes in treatment protocol

26. Outcome Measures • Patient and Sibling Quality of Life • The Pediatric Cancer Quality of Life Inventory (Varni et al., 1998) • The Child Health Questionnaire (Landgraff et al.,1996) (Patient, siblings) • Parental Distress • The SP36 (Ware et al., 1994) • Perceived Stress Scale (Cohen et al., 1983) • SCL-90-R (Derogatis, 1983) • Parenting Stress Index (Abidin, 1983)

27. Outcome Measures, Cont • Child Distress • CDI (Kovacs, 1992) • State/Trait Anxiety Inventory for Children (STAIC; Spielberger, 1973) • Children’s Hassles Scale (CHS; Kanner, Harrison & Wertlieb,1985)

28. Moderator Variables • Social Support (Child, sibling and parent) • Coping • Family Environment Control Variables Demographics – age, SES Disease factors (stage, treatment)

29. Mean group differences post-intervention

30. “Connections to Coping”NCI Funded RCT • Intervention was modified based on barriers to participation identified in feasibility study • Multimodal: • web site- bulletin boards • Telephone contact • Shorter sessions in clinic – 30 minutes • 2 in-home visits • Full time clinician in clinic

31. A Stress Management Intervention for Children with Moderate, Persistent Asthma Anna Marsland, Ph.D., R.N.; David P. Skoner, M.D.; Lin Ewing, Ph.D., R.N.; Rhonda Rosen, M.S.W.; Amanda Thompson, Ph.D.; Kristin Long; Megan Ganley; & Sheldon Cohen, Ph.D.

32. Why Pediatric Asthma? • Etiology multifactorial – precipitants • Environmental – allergens • Physiological – predisposition to allergies and upper respiratory infection (80-85% of pediatric exacerbations involve URI) • Psychological – psychological stress, negative emotional states/excitement • Stress can trigger or exacerbate acute and chronic asthma in children (Sandberg et al., 2000)

33. Theoretical Model: Potential Pathways linking stress to asthma • Behavioral: e.g., adherence to prophylactic meds, changes in sleep, diet, activity • Physiological – Stress is associated with activation of innate inflammatory paths likely to be involved in asthma exacerbation • Physiological – stress is associated with increased susceptibility to URI in children

34. Psychosocial Interventions in Childhood Asthma (McQuaid et al., 2000) • 6 studies • All used relaxation training • Findings promising • Improvement in pulmonary function, especially for children who endorse emotionally-triggered asthma

35. Stress Management Intervention and Susceptibility to URI (Hewson-Bower & Drummond (2001) • Comprehensive stress management intervention – relaxation training, emotion management, coping skills training and problem solving • Associated with reduction of URI symptoms among children with recurrent URIs

36. ASTHMA The Asthma Model

37. Session 1: The Role of Breathing • Introduction to Program • Point System • Introduce relationships between stress, breathing, and asthma • Introduce biofeedback and belly breathing Homework • Daily breathing practice • Stress log

38. Session 2: Physical responses to Stress and Relaxation • Learn about stress (focus on physical responses) • How can stress trigger asthma • Learn about relaxation (physical responses) • Teach body awareness relaxation with hand temperature feedback Homework • Daily body awareness exercise recording hand temperature • Continue stress log

39. Session 3: Thoughts and Feelings • Use Stress journal to introduce relationship between thoughts and feelings (CBT exercises) • Discuss different methods of coping – including distraction and shifting attention • Discuss the physical symptom of muscle tension • Introduce progressive muscle relaxation with EMG feedback Homework • Daily PMR practice • Thoughts and feelings exercise

40. Progressive Muscle Relaxation

41. Session 4: Coping with Emotions • Introduce range of emotions • Link emotions to physical reactions • How to cope with emotions • Tolerance/ calm thoughts/expressing emotion. Shifting attention • Emotions and asthma • Guided imagery as method of relaxation with hand temperature feedback Homework • Daily imagery relaxation practice • Coping with emotions work sheet

42. Session 5: Thoughts, Feelings, Sensations, and Asthma • Relationships between thoughts, feelings, behaviors and asthma • Apply coping strategies to situations in stress log • Apply coping strategies to handling asthma • Practice preferred relaxation and discuss generalization of skills Homework • Daily practice of relaxation of choice • CBT worksheet

43. Session 6: My Coping with Emotions and Asthma Plan • Pull together coping strategies and develop an individualized plan for coping with asthma • Review skills and discuss maintenance • Practice preferred relaxation and discuss generalization of skills • Rewards and goodbyes

44. MY COPING SKILLS

45. Steps in Research Process • Identify clinical population • Dr. David Skoner – Pulmonologist/Co-I “Recruitment will be no problem” • Secure funding for pilot study • Fetzer Institute – funded a 2 year pilot project in June 2003 (no cost extension – grant ended June 2006) • Create intervention materials: • 6 months – complete December 2004

46. The “I Can Cope” Pilot Study • Subjects: 20 children • 8-12 year-old • Diagnosis of moderate, persistent asthma • Endorse emotional triggers • Randomly assigned to intervention (N = 10) and control (N=10) groups • Intervention: Six 60 minute individual sessions within 3 month period

47. Pre- and post-intervention Measures • 2 week daily diary completed in morning and at bedtime • Asthma symptoms • Affect measure - POMS • Perceived Stress - PSS • Open ended stress question • Peak flow measure • Lung function- spirometry • Salivary cortisol: measured 4 times/day for 2 days • Questionnaires completed by guardian and child – CBCL/ POMS/ CDI/ STAI/ PSS

48. Recruitment Nightmare • Recruitment started in January 2004 and finished in September 2006 • Enormous recruitment efforts • Letter to all Dr. Skoner’s patients • Asthma fair in 2004 and 2005 • Asthma basketball clinic 2005 • Respiratory Alliance newsletter – to 3,000 individuals in Western PA • UPMC and Pitt voice mail • TV/newspaper/magazines • Extended recruitment to CHP • Letters to pediatricians/flyers in doctors offices • Presence in CHP clinics

49. Results • Total number screened: 28 • 24 eligible • 8 not interested (too far, don’t drive, child not interested) • 16 enrolled (13 intervention/3 control) • 11 completed intervention (2 dropouts after session 1 – practical reasons) • 1 completed control (2 dropouts- no response)

50. Decrease in Depression** and Anxiety* (POMS) • ** t=3.37, p<.006 • * t=1.52, p<.16