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Madalynn Neu, PhD, RN Ellyn Matthews, PhD, RN Paul Cook, PhD

Chronic Stress and Distress of Mothers of Children with Acute Lymphocytic Leukemia During Maintenance Therapy. Madalynn Neu, PhD, RN Ellyn Matthews, PhD, RN Paul Cook, PhD. Acknowledgments.

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Madalynn Neu, PhD, RN Ellyn Matthews, PhD, RN Paul Cook, PhD

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  1. Chronic Stress and Distress of Mothers of Children with Acute Lymphocytic Leukemia During Maintenance Therapy Madalynn Neu, PhD, RN Ellyn Matthews, PhD, RN Paul Cook, PhD

  2. Acknowledgments • This research is supported by the UCDenver Colorado Clinical Translational Science Institute (CCTSI) Pilot Award (1UL1RR014780) and Clinical Translational Research Center (CTRC) Funding for cortisol assays, bioinformatics, nursing support • We would like to acknowledge the contributions of the research team: • Flori Legette • Kimberlee Horst • Nancy Kipke • Nancy Waas • Ken Clevenger • Erin Hughes • Megan Duffy • Mark Laudenslager, PhD • Tim Garrington, MD • Martin Reite, MD • Paul Cook, PhD • Janie Kappius • Ann Ribe • Jane Ambro • Lacey Felmlee

  3. ALL Background Most common malignancy in childhood; accounts for 75% of all childhood leukemias (AML 23%, CML 2%) 3000 new cases annually in U.S. Peak incidence is 4 years of age Overall survival of 70-80%, approaches 90% for standard or low risk patients Age: >1 and <10 yo is favorable WBC: <50,000 is favorable

  4. ALL Treatment Induction: Goal is remission- 4wks Consolidation: Treatment to spine - 4-8 wks Interim Maintenance: Rest phase- 6-8 wks Delayed Intensification: Reduces # of hiding cells- 8 wks Maintenance: 2 years for females 3 years for males

  5. Maintenance Chemotherapy Dexamethasone orally 5 days every 4 weeks Vincristine IV every 4 weeks Mercaptopurine orally daily x 84 days Oral methotrexate weekly Intrathecal methotrexate every 12 weeks

  6. Potential side effects Steroids: increased appetite, weight gain, fluid retention, mood swings Vincristine: body aches, peripheral neuropathy Mercaptopurine: nausea, low blood counts Methotrexate: nausea, low blood counts

  7. Operational Definitions of Stress and Distress • Stress • Activation of HPA axis indicated by cortisol levels • Self-reported stress • Distress • Anxiety • Depression

  8. Family Disruption and Stress in Parents of Children with Cancer • Childhood cancer has been associated with disruption in family life (Aung, 2012; Gedaly-Duff et al., 2006; Sung et al., 2011; Tsimicaliset al., 2012). • Posttraumatic stress reported in ~ 25% of parents of children with cancer (Poder et al., 2008)

  9. Stress and Distress in Parents of Children with Cancer • Decrease in parents of children with cancer from diagnosis to posttreatment • May still be present years post treatment (Best et al., 2001; Boman et al., 2003) • Occur during entire course of treatment for cancer (Norberg et al., 2005; Masa’deh et al., 2012; von Essen et al., 2004 • More severe at time of diagnosis than later during treatment (Vrijmoet-Wiersma, 2008) • More severe in complicated cancer than with ALL (Hoven et al., 2008

  10. HPA Axis & Cortisol • Perception of stress or emotional arousal activates HPA axis • Persons experiencing chronic stress may have lower daily cortisol levels and flatter diurnal slopes (Bicanic et al., 2012; Sriram et al., 2012; van Liempt et al., 2012)

  11. Problem • Overall survival is very good (80- 90%) in children with ALL • Research suggests that high levels of parental stress and distress decrease from time of diagnosis to post-treatment in children with cancer –but some parents continue to experience stress even after treatment is completed. • Few studies have investigated physiologic stress and emotional stress and distress in mothers of children with ALL specifically during maintenance treatment.

  12. Overall Study Purpose • Examine the sleep/wake patterns, physiologic stress, and emotional stress and distress in mothers of children during maintenance treatment for ALL compared to matched controls • H1: Mothers of children with ALL will display greater insomnia compared to mothers of healthy children • H2: Mothers of children with ALL will display greater physiologic stress than mothers of healthy children • H3: Mothers of children with ALL will report more emotional stress and distress (anxiety, depression) than mothers of healthy children

  13. Comparative Study Design

  14. Sampling and Study Procedures • Mothers/children with ALL • Recruited through the TCH hematology practice with the assistance of clinicians and research partners, who screened potential participants • Mothers/healthy children • Recruited from the community (ad, brochure, or university email), and matched by gender and age • Informed consent was obtained • Mothers received $40 and children received $10 or an equivalently-priced stuffed animal, disbursed at the completion of visit 2.

  15. Maternal Inclusion and Exclusion Criteria • Inclusion • Greater than 18 years of age • Primary caregiver • Speak and write English • Exclusion • Serious, unstable physical illness • Major psychiatric disorder • Diagnosed sleep disorder • Steroid medication

  16. Child Inclusion and Exclusion Criteria • Inclusion • Between 3 and 12 years of age • No concurrent illness or disability • Capable of consistently wearing actiwatch per mother’s assessment • ALL Only • Currently receiving maintenance treatment for ALL

  17. Measures Demographic and Medical History Form (Adult and Child) Stress • Salivary Cortisol • Perceived Stress Scale (PSS) Psychological • Hospital Anxiety and Depression Scale (HADS) Sleep • Wrist Actigraphy • Adult and Child Sleep Diary • Insomnia Interview Schedule (Screening) • Insomnia Severity Index (ISI) • The Children’s Sleep Habits Questionnaire (CSHQ)

  18. Salivary Cortisol • Mothers were given filter paper strips to collect saliva • Strips in booklet marked with day and time of desired collection • Mothers were asked to collect saliva On awakening 30 minutes after awakening Before eating lunch 10 hours after awakening • Mothers • Avoided eating, smoking, or drinking anything but water one hour before collection • Recorded time of last vigorous exercise, medications taken, and date of last menstrual period • Placed strip on tongue for ~ 10 sec until lower 2 inches of paper were saturated, marked the date and time of sample and air-dried the paper.

  19. Overview of Visit 1 and 2 • Visit 1 • Consent obtained before or during visit 1 • Questionnaires administered • Education provided about salivary cortisol sampling, collection times confirmed • Actiwatches applied to non-dominant wrists (child and mother) • Education provided about the actiwatch and sleep diaries • Visit 2 (~ one week after visit 1) • Actiwatches, diaries, and saliva booklets collected • Compensation provided

  20. Statistical Analysis: Aim 1

  21. Statistical Aim 1 • Area Under the Curve (AUC) AUC

  22. Statistical Aim 1 Amount of change in cortisol per hour. • Slope • Morning rise to 30 minutes after awakening

  23. Results: Dyad Enrollment CONTROLS Eligible (n= 29) ALL Eligible (n = 35) • 9 Refused • Reason given: • Child would not wear watch (6) • Too busy (2) • No reason given (1) • 3 Refused • Reason given: • Child would not wear watch (2) • Inadequate reimbursement (1) Completed Study: n = 26 Completed Study: n = 26

  24. Results: Demographic Data

  25. Results: Perceived Stress Scale (PSS) (Mothers, n = 52) ns

  26. Results: Hospital Anxiety and Depression Scale (HADS) ** p .003

  27. Results: Percent of Participants with Scores 8 and Above (cut-off) for (HADS)

  28. Results: Salivary Cortisol AUC (n = 52) Nmol/L **p=.015

  29. Results: Salivary Cortisol Slope (n = 52) ns

  30. Results: Salivary Cortisol Wake to 30 Minutes (n = 52) Nmol/L ns

  31. Discussion/Conclusion • Even in maintenance treatment, emotional distress are significantly worse in mothers of children with ALL than in matched controls • Daily cortisol levels were lower in mothers of children with ALL than in matched controls, physiologically suggesting the presence of chronic stress • Consistent with previous literature, sleep disturbance affect stress and depression levels in mothers of children with cancer, even when the chance of complete cure is very high

  32. Limitations • The control sample was more highly educated, more employed and wealthier than the ALL sample (These potential covariates did not correlate with primary outcomes) • Sample may have been too small to detect differences in some measures • Fathers were not included in this study • Time in maintenance was variable (~1 month to close to 36 months)

  33. Future Directions • Research • Conduct a larger study so that the effect of duration of maintenance treatment on parent stress can better be determined • Thoroughly examine the qualitative data collected in this study to determine feasibility of stress intervention for mothers/parents of children with ALL during maintenance • Include father in subsequent research • Practice • Understand that even when prognosis is very favorable and treatment is not in the intense phases, mothers of children with ALL may be experiencing stress • Encourage mothers to discuss their feelings during treatment visits

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