madalynn neu, phd, rn ellyn matthews, phd, rn paul cook, phd chronic stress and distress of mothers...
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Madalynn Neu, PhD, RNEllyn Matthews, PhD, RN
Paul Cook, PhD
Chronic Stress and Distress of Mothers of Children with Acute Lymphocytic Leukemia During
Maintenance Therapy
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
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
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
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
Steroids: increased appetite, weight gain, fluid retention, mood swings
Vincristine: body aches, peripheral neuropathy
Mercaptopurine: nausea, low blood counts Methotrexate: nausea, low blood counts
Stress◦ Activation of HPA axis indicated by cortisol
levels◦ Self-reported stress
Distress◦ Anxiety◦ Depression
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Childhood cancer has been associated with disruption in family life (Aung, 2012; Gedaly-Duff et al., 2006; Sung et al., 2011; Tsimicalis et al., 2012).
Posttraumatic stress reported in ~ 25% of parents of children with cancer (Poder et al., 2008)
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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
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Perception of stress or emotional arousal activates HPA axis Persons experiencingchronic stress may have lower daily cortisol levels and flatter diurnal slopes(Bicanic et al., 2012; Sriram et al., 2012; van Liempt et al., 2012)
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.
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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
Overall Study Purpose
Comparative Study Design
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.
Sampling and Study Procedures
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
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
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)
Measures
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 awakening30 minutes after awakeningBefore eating lunch10 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.
Salivary Cortisol
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
Overview of Visit 1 and 2
Hypotheses Measure / Analysis
H2: Mothers with ALL child will report greater overall stress than mothers of healthy children
Perceived Stress Scale (PSS)ANOVA controlling for covariates of income, employment, race
Salivary cortisolIndependent t-tests to compare cortisol AUC, slope, wake to 30 minutes
H3: Mothers with ALL child will report greater more emotional distress (anxiety, depression) than mothers of healthy children.
Hospital Anxiety and Depression Scale (HADS)ANOVA controlling for covariates of income, employment, race
Statistical Analysis: Aim 1
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Area Under the Curve (AUC)
AUC
Slope
Morning rise to 30 minutes after awakening
Amount of change in cortisol per hour.
Results: Dyad EnrollmentCONTROLS
Eligible (n= 29)
9 RefusedReason given: • Child would not wear watch (6)• Too busy (2)• No reason given (1)
3 RefusedReason given: • Child would not wear watch (2)• Inadequate reimbursement (1)
Completed Study: n = 26Completed Study: n = 26
ALLEligible (n = 35)
Demographics ALL(n = 26)
Control(n = 26)
Chi-Square
Married N (%) 84.6% 73.9% ns
Non Hispanic 69.2% 87.0% ns
Race: White 76.0% 84.6% ns
Education: ≥College
50.0% 76.9% p = .044
Employed (PT+FT)*
Full time
Part time
Unemployed
46.2%
23.1%
23.1%
53.8%
69.2%
57.7%
11.5%
30.8%
ns
p = .039
Married N (%) 84.6% 73.9% ns
Results: Demographic Data Demographic ALL
(n = 26)Control(n = 26)
T-test
Age (mother) 33.0 yrs 35.7 yrs ns
Age of child 3-10 yrs Matched
Results: Perceived Stress Scale (PSS) (Mothers, n =
52)
ns
Results: Hospital Anxiety and Depression Scale
(HADS)
** p .003
Results: Percent of Participants with Scores 8 and
Above (cut-off) for (HADS)
Results: Salivary Cortisol AUC
(n = 52)
**p=.015
Nmol/L
Results: Salivary Cortisol Slope(n = 52)
ns
Results: Salivary Cortisol Wake to 30 Minutes (n = 52)
Nmol/L
ns
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
Discussion/Conclusion
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)
Limitations
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
Future Directions