Publications by authors named "Kathryn M Russell"

24 Publications

  • Page 1 of 1

Do Anxiety and Mood Vary among Disparate Sleep Profiles in Youth with Craniopharyngioma? A Latent Profile Analysis.

Behav Sleep Med 2021 Mar 4:1-12. Epub 2021 Mar 4.

Department of Psychology, St. Jude Children's Research Hospital, Memphis, Tennesse.

Introduction: Craniopharyngioma is a histologically benign brain tumor that arises in the suprasellar region affecting critical neurovascular structures including the hypothalamic-pituitary-adrenal axis and optic pathways. Children with craniopharyngioma often experience excessive daytime sleepiness which may be compounded by anxiety and depression. The current study investigated disparate sleep profiles to better understand psychological adjustment among children diagnosed with craniopharyngioma. Method: Actigraphs recorded nightly sleep data, including measures of sleep onset latency and wake after sleep onset, in a cohort of 80 youth between the ages of 2 and 20 years (median age = 9). Parent reports of behavioral and emotional functioning were included in the analysis. A latent profile analysis examined disparate sleep profiles, and a multinomial logistic regression examined differences of anxiety and depression among the sleep profiles. Results: The latent profile analysis revealed three sleep profiles: "variable sleepers" (48.3%), "consistently poor sleepers" (45.4%), and "night wakers" (6.4%). Consistently poor sleepers had lower rates of anxiety ( = .76; = .009) and depression ( = .81; = .003) than variable sleepers and had significantly lower rates of anxiety than night wakers ( = .52; = .05); all other differences were nonsignificant (s > .05). Discussion: Youth with craniopharyngioma who have nightly variations in sleep may have worse psychological functioning than those with more consistent, albeit poor, sleep patterns. Patients with craniopharyngioma who report variable sleep should be assessed for anxiety and depression to prevent and intervene on emotional difficulties that may be reciprocally related to sleep.
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http://dx.doi.org/10.1080/15402002.2021.1892679DOI Listing
March 2021

Neurocognitive functioning in long-term survivors of pediatric hematopoietic cell transplantation.

Bone Marrow Transplant 2021 Apr 14;56(4):873-882. Epub 2020 Nov 14.

Department of Psychology, St. Jude Children's Research Hospital, Memphis, TN, USA.

Survivors of pediatric hematopoietic cell transplantation (HCT) are at risk for impairment in cognitive and academic function. Most research to date has focused on the first years following transplant, and less is known about the long-term effects. We examined global and specific neurocognitive functioning in long-term (>5 years post HCT) survivors in comparison to both normative data and a sample of demographically similar healthy peers. A comprehensive battery of neurocognitive measures was obtained from 83 long-term survivors and 50 healthy comparisons. Analyses were conducted to assess for differences in neurocognitive functions between survivors, normative means, and healthy comparisons, and to examine the impact of medical and demographic variables on neurocognitive performance. Survivors' performance was within the Average range across most measures, although significantly lower than both test norms and healthy comparisons on several measures. Despite generally intact neurocognitive functioning in the survivor group as a whole, survivors who experienced graft-vs.-host disease demonstrated slower processing speed and weaker verbal learning. Use of total body irradiation was not associated with any performance-based measure of neurocognitive functioning. Although subgroups of patients may be at relatively higher risk of neurocognitive impairment, the long-term neurocognitive impact for most survivors is relatively small.
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http://dx.doi.org/10.1038/s41409-020-01125-5DOI Listing
April 2021

Parent recommendation to bank sperm among at-risk adolescent and young adult males with cancer.

Pediatr Blood Cancer 2020 10 26;67(10):e28217. Epub 2020 May 26.

Department of Psychology, St. Jude Children's Research Hospital, Memphis, Tennessee.

Background: Adolescent and young adult (AYA) males newly diagnosed with cancer are often faced with making quick decisions about whether to cryopreserve ("bank") sperm prior to treatment initiation. Given that parental influence is crucial among young patients, the present study examines the prevalence of and factors associated with parent recommendation to bank sperm.

Procedure: Parents of 13- to 21-year-old males newly diagnosed with cancer and at risk for infertility secondary to impending gonadotoxic treatment completed questionnaires typically within one week of treatment initiation. Medical and sociodemographic data, communication factors, and psychological factors were considered in a logistic regression model of parent report of parental recommendation to bank sperm (yes/no).

Results: Surveys from 138 parents (70.3% female) of 117 AYA males (mean age = 16.1 years, SD = 2.0) were analyzed. Over half of parents recommended banking to their sons (N = 82; 59.4%). Parents who received a provider recommendation to bank sperm (odds ratio [OR] = 18.44, 95% confidence interval [CI], 4.20-81.01, P < 0.001) or who believed in the benefits of banking (OR = 1.22, 95% CI, 1.02-1.47, P = 0.03) were significantly more likely to recommend sperm banking.

Conclusions: Given parents' role in influencing sperm banking outcomes, provider recommendation and promotion of banking benefits may influence parents and empower initiation of these sensitive discussions with their sons. Utilization of this approach should yield beneficial outcomes regardless of the banking decision.
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http://dx.doi.org/10.1002/pbc.28217DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7688489PMC
October 2020

Characterizing Posterior Fossa Syndrome: A Survey of Experts.

Pediatr Neurol 2020 03 29;104:19-22. Epub 2019 Nov 29.

Department of Psychology, St. Jude Children's Research Hospital, Memphis, Tennessee. Electronic address:

Background: Despite recent efforts, disagreement remains among frontline clinicians regarding the operational definition of a syndrome commonly referred to as posterior fossa syndrome or cerebellar mutism syndrome.

Methods: We surveyed experts in the clinical care of children with posterior fossa tumors to identify trends and discrepancies in diagnosing posterior fossa syndrome.

Results: All surveyed professionals conceptualized posterior fossa syndrome as a spectrum diagnosis. The majority agreed that mutism is the most important symptom for diagnosis. However, results highlighted ongoing discrepancies related to important features of posterior fossa syndrome.

Conclusions: Greater posterior fossa syndrome conceptual alignment among providers is needed to formulate specific diagnostic criteria that would further research and clinical care. The authors propose preliminary diagnostic criteria for posterior fossa syndrome that require refinement through careful clinical characterization and targeted empirical investigation.
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http://dx.doi.org/10.1016/j.pediatrneurol.2019.11.007DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7010537PMC
March 2020

Factors Associated with Intention of Human Papillomavirus (HPV) Vaccine Initiation Among Females With and Without a History of Childhood Cancer.

J Clin Psychol Med Settings 2020 12;27(4):716-726

Departments of Psychology, St. Jude Children's Research Hospital, Memphis, TN, USA.

Vaccination is available to prevent human papillomavirus (HPV) types that cause cervical and other cancers. This study aimed to describe and compare vaccine intention among young females with and without a cancer history, in addition to identifying factors associated with a HPV vaccination intention. Vaccine-naïve females (aged 18-26 years, n = 120) and maternal caregivers with vaccine-naïve daughters (aged 9-17 years, n = 197) completed surveys querying HPV vaccination intention, HPV knowledge, and communication, along with sociodemographic, medical, and health belief factors. Multivariable logistic regression was utilized to calculate odds ratio (OR) and 95% confidence intervals for HPV vaccination intention. No differences in vaccine intention were identified across cancer and comparison groups. Vaccine intention and predictors of intention among vaccine-naïve females differ by age, and there is variation in the factors which influence vaccine intention by age group. These results suggest interventions should be tailored based on developmental level.
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http://dx.doi.org/10.1007/s10880-019-09664-wDOI Listing
December 2020

The impact of connectedness on social functioning in youth with brain tumors.

Pediatr Blood Cancer 2019 05 6;66(5):e27607. Epub 2019 Jan 6.

Department of Psychology, St. Jude Children's Research Hospital, Memphis, Tennessee.

Purpose: Children with brain tumors (BT) are at risk for difficulties with social functioning. Research to date has focused on deficits, with no studies identifying areas of strength or resilience. Our objective was to assess the potential influence of connectedness on social functioning in youth with BT as compared with children with other cancers.

Methods: Children with cancer (20 with BT, 33 with other diagnoses) were enrolled on a longitudinal study of psychosocial functioning. The current study included measures from time 2 (+1 year after enrollment; M = 13.11 ± 2.31, M = 4.95 ± 3.74 years) and time 3 (+3 years after enrollment; M = 14.98 ± 2.36, M = 6.82 ± 3.81 years). Youth completed the Hemingway Measure of Adolescent Connectedness (HMAC) at time 2. Two years later, social functioning was assessed by the self- and proxy-report versions of the Social-Emotional Assets and Resilience Scale (SEARS).

Results: Youth with BT perceived that they were less connected to friends (t(50) = -2.13, P = 0.04), but similarly connected to peers as youth with other cancers. Youth with BT also demonstrated lower social functioning by self- and parent report. Connectedness to friends significantly mediated the relationship between diagnostic category and self-reported social functioning, such that youth with BT who reported being more connected to friends also indicated greater social functioning. Analyses using connectedness to peers and/or parent-reported social functioning were nonsignificant.

Conclusions: Perceiving a connection to a friend may be a protective factor that could mitigate deficits in social functioning in youth with BT. Additional research is needed to further assess the potential benefits of this construct.
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http://dx.doi.org/10.1002/pbc.27607DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6428615PMC
May 2019

A quality improvement project to improve pediatric medical provider sleep and communication during night shifts.

Int J Qual Health Care 2019 Oct;31(8):633-638

Department of Psychology, St. Jude Children's Research Hospital, 262 Danny Thomas Place, MS-101, Memphis, TN, USA.

Quality Problem Or Issue: Night-shift medical providers frequently experience limited sleep resulting in fatigue, often because of paging activity. Streamlined medical-specific communication interventions are known to improve sleep and communication among these providers.

Initial Assessment: We found that non-urgent paging communication occurred frequently during night-shifts, leading to provider sleep disturbances within our institution. We tested a quality improvement (QI) intervention to improve paging practices and determined its effect on provider sleep.

Choice Of Solution: We used a Plan-Do-Study-Act QI model aimed at improving clinician sleep and paging communications.

Implementation: We initially conducted focus groups of nurses and physician trainees to inform the creation of a standardized paging intervention. We collected actigraphy and sleep log data from physicians, nurse practitioners, and physician trainees and performed electronic collection of paging frequency data.

Evaluation: Data were collected between December 2015 and March 2017 from pediatric residents, pediatric hematology/oncology (PHO) fellows, hospitalist medicine nocturnists and nurses working during night-shift hours in PHO inpatient units. We collected baseline data before implementation of the QI intervention and at 1 month post-implementation. Although objective measures and provider reports demonstrated improved medical-specific communication paging practices, provider sleep was not affected.

Lessons Learned: Provider-based standardization of paging communication was associated with improved medical-specific communication between nurses and providers; however, provider sleep was not affected. The strategies used in this intervention may be transferable to other clinics and institutions to streamline medical-specific communication.
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http://dx.doi.org/10.1093/intqhc/mzy221DOI Listing
October 2019

Parent-reported executive functioning in young children treated for cancer.

Child Neuropsychol 2019 05 26;25(4):548-560. Epub 2018 Jul 26.

a Department of Psychology , St. Jude Children's Research Hospital , Memphis , TN , USA.

It is well known that children treated for cancer are at risk for cognitive and functional impairments. Such research is largely based on studies of late effects in school-aged or older children. However, far less is known about executive function weaknesses in preschool-aged children treated for cancer. Thus, the aim of this study was to examine executive functioning in a clinically referred sample of young oncology patients, and its association with broader domains of functioning. Data from 61 young children with cancer, who were referred for clinical cognitive evaluations, were abstracted and included in this study. Patients were 5.00 years of age (SD = 0.72) at assessment, 54.1% male, and two-thirds (63.9%) had been treated for brain tumors. Most executive functions were significantly discrepant from the mean, with 47.5% of preschoolers having parent-reported working memory concerns within the clinically significant range. There were no differences in executive functioning based on diagnosis or treatment status. Parent-reported executive functioning was strongly correlated with global intelligence and adaptive functioning, with some indices also associated with nonverbal problem solving and pre-academic skills. Ultimately, results indicate the presence of emerging weaknesses in executive functioning in young children with cancer, and add to a growing body of literature highlighting the potential cognitive and behavioral risks associated with a cancer diagnosis in early childhood.
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http://dx.doi.org/10.1080/09297049.2018.1503647DOI Listing
May 2019

Patient factors associated with sperm cryopreservation among at-risk adolescents newly diagnosed with cancer.

Cancer 2018 09 5;124(17):3567-3575. Epub 2018 Jul 5.

Department of Behavioral Science, The University of Texas MD Anderson Cancer Center, Houston, Texas (retired).

Background: Although survivors of adolescent-onset cancers are at risk of infertility, the majority desire children. Fertility preservation options are available for adolescents, but sperm banking remains underused. To the authors' knowledge, patient factors that influence decisions to bank sperm are poorly understood.

Methods: A cross-sectional study of 146 adolescent males who were newly diagnosed with cancer and who completed surveys within 1 week of treatment initiation was performed. Participants, 65% of whom were white, were aged 13 to 21 years (mean, 16.49 years; standard deviation, 2.02 years) and were at risk of infertility secondary to impending gonadotoxic treatment. Participating institutions included 8 leading pediatric oncology centers across the United States and Canada.

Results: Of the patients approached, approximately 80.6% participated. Parent recommendation to bank (odds ratio [OR], 4.88; 95% confidence interval [95% CI], 1.15-20.71 [P = .03]), higher Tanner stage (OR, 4.25; 95% CI, 1.60-11.27 [P < .01]), greater perceived benefits (OR, 1.41; 95% CI, 1.12-1.77 [P < .01]), and lower social barriers to banking (OR, 0.88; 95% CI, 0.81-0.96 [P < .01]) were found to be associated with adolescent collection attempts, whereas meeting with a fertility specialist (OR, 3.44; 95% CI, 1.00-11.83 [P = .05]), parent (OR, 3.02; 95% CI, 1.12-8.10 [P = .03]) or provider (OR, 2.67; 95% CI, 1.05-6.77 [P = .04]) recommendation to bank, and greater adolescent self-efficacy to bank (OR, 1.16; 95% CI, 1.01-1.33 [P = .03]) were found to be associated with successful sperm banking.

Conclusions: Adolescents' perceived benefits of sperm banking, higher Tanner stage, and parent recommendation were associated with collection attempts, whereas perceived social barriers decreased this likelihood. Successful banking was associated with greater adolescent self-efficacy, parent and provider recommendation to bank, and consultation with a fertility specialist. Providers should consult with both adolescents and parents regarding fertility preservation, and interventions should be tailored to address barriers to sperm banking while promoting its benefits.
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http://dx.doi.org/10.1002/cncr.31596DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6191330PMC
September 2018

Accurate understanding of infertility risk among families of adolescent males newly diagnosed with cancer.

Psychooncology 2018 04 20;27(4):1193-1199. Epub 2018 Feb 20.

Department of Psychology, St. Jude Children's Research Hospital, Memphis, TN, USA.

Objective: To examine patient and parent understanding of infertility risk (relative to oncologists' risk ratings) among adolescents newly diagnosed with cancer, and to identify background factors related to inaccurate reporting/estimating.

Methods: Male patients (N = 137; aged 13-21) and their parents completed self-report questionnaires. Those who reported a fertility-related conversation with their provider (N = 102 adolescents, N = 74 parents) reported their infertility risk (ie, what oncologist had communicated) and all participants' estimated risk (ie, personal belief). Reports/estimates were compared with oncologists' ratings to assess relative accuracy, and regression analyses assessed potentially related background factors.

Results: Participants' agreement of their risk reports with the oncologist was poor (κ = .079/.122 for adolescents/parents), resulting in most adolescents (59.8%) and parents (58.7%) inaccurately reporting risk. Older adolescents were less likely to overreport risk (OR = 0.69; 95% CI, 0.49-0.97) and parents of sons with the highest Tanner stage were less likely to underreport (OR = 0.28; 95% CI, 0.08-0.92). Risk estimates were also in poor agreement with oncologists' ratings among adolescents (κ = .040) and parents (κ = .088). Accordingly, incongruent estimates occurred in most adolescents (63.7%) and parents (62.2%), although all reported fertility-related conversations with their providers.

Conclusions: Most adolescents and parents inaccurately reported infertility risk, and more poorly estimated risk. Research is needed to identify additional factors associated with accurate understanding of cancer-related infertility risk. Providers should be supported with user-friendly educational tools to promote awareness of infertility risk.
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http://dx.doi.org/10.1002/pon.4646DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6392008PMC
April 2018

Parental influences on sperm banking attempts among adolescent males newly diagnosed with cancer.

Fertil Steril 2017 12;108(6):1043-1049

Department of Behavioral Science, MD Anderson Cancer Center, University of Texas, Houston, Texas.

Objective: To investigate the influence of parental sociodemographic, communication, and psychological factors on sperm collection attempts among at-risk adolescent males newly diagnosed with cancer.

Design: Prospective, single group, observational study design.

Setting: Pediatric oncology centers.

Patient(s): Parents (N = 144) of 122 newly diagnosed adolescent males at increased risk for infertility secondary to cancer therapy.

Intervention(s): Survey-based assessment of parent factors associated with adolescent collection attempts.

Main Outcome Measure(s): Attempt of manual collection of sperm.

Result(s): Parental recommendation to bank sperm (odds ratio [OR] 3.72; 95% confidence interval [CI] 1.18-11.76) and perceived self-efficacy to facilitate banking (OR 1.20; 95% CI 1.02-1.41) were associated with an increased likelihood of making a collection attempt.

Conclusion(s): Parental recommendation to bank is a critical influence for sperm banking among adolescent males newly diagnosed with cancer. These findings highlight the importance of effective communication between parents, patients, and health-care teams when discussing preservation options. Parent perceptions of their ability to facilitate sperm banking at the time of diagnosis should also be targeted in future interventions.

Clinical Trial Registration Number: NCT01152268.
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http://dx.doi.org/10.1016/j.fertnstert.2017.08.039DOI Listing
December 2017

Prevalence and Predictors of Sperm Banking in Adolescents Newly Diagnosed With Cancer: Examination of Adolescent, Parent, and Provider Factors Influencing Fertility Preservation Outcomes.

J Clin Oncol 2017 Dec 4;35(34):3830-3836. Epub 2017 Oct 4.

James L. Klosky, Fang Wang, Kathryn M. Russell, Hui Zhang, Jessica S. Flynn, Lu Huang, and William H. Kutteh, St Jude Children's Research Hospital, Memphis, TN; Karen Wasilewski-Masker, Children's Healthcare of Atlanta and Emory University, Atlanta, GA; Wendy Landier, City of Hope, Duarte; Jacqueline Casillas, David Geffen School of Medicine, University of California Los Angeles, Los Angeles, CA; Marcia Leonard, C. S. Mott Children's Hospital, University of Michigan, Ann Arbor, MI; Karen H. Albritton, Cook Children's Medical Center, Fort Worth; Leslie R. Schover, MD Anderson Cancer Center, Houston, TX; Abha A. Gupta, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada; and Paul Colte, Primary Children's Hospital, Salt Lake City, UT.

Purpose To estimate the prevalence of sperm banking among adolescent males newly diagnosed with cancer and to identify factors associated with banking outcomes. Patients and Methods A prospective, single-group, observational study design was used to test the contribution of sociodemographic, medical, psychological/health belief, communication, and developmental factors to fertility preservation outcomes. At-risk adolescent males (N = 146; age 13.00 to 21.99 years; Tanner stage ≥ 3), their parents, and medical providers from eight leading pediatric oncology centers across the United States and Canada completed self-report questionnaires within 1 week of treatment initiation. Multivariable logistic regression was used to calculate odds ratios (ORs) and 95% CIs for specified banking outcomes (collection attempt v no attempt and successful completion of banking v no banking). Results Among adolescents (mean age, 16.49 years; standard deviation, 2.02 years), 53.4% (78 of 146) made a collection attempt, with 43.8% (64 of 146) successfully banking sperm (82.1% of attempters). The overall attempt model revealed adolescent consultation with a fertility specialist (OR, 29.96; 95% CI, 2.48 to 361.41; P = .007), parent recommendation to bank (OR, 12.30; 95% CI, 2.01 to 75.94; P = .007), and higher Tanner stage (OR, 5.42; 95% CI, 1.75 to 16.78; P = .003) were associated with an increased likelihood of a collection attempt. Adolescent history of masturbation (OR, 5.99; 95% CI, 1.25 to 28.50; P = .025), banking self-efficacy (OR, 1.23; 95% CI, 1.05 to 1.45; P = .012), and parent (OR, 4.62; 95% CI, 1.46 to 14.73; P = .010) or medical team (OR, 4.26; 95% CI, 1.45 to 12.43; P = .008) recommendation to bank were associated with increased likelihood of sperm banking completion. Conclusion Although findings suggest that banking is underutilized, modifiable adolescent, parent, and provider factors associated with banking outcomes were identified and should be targeted in future intervention efforts.
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http://dx.doi.org/10.1200/JCO.2016.70.4767DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5707206PMC
December 2017

Cognitive and Psychosocial Functioning of Preschool-Aged Children with Cancer.

J Dev Behav Pediatr 2017 Oct;38(8):638-645

*Department of Psychology, St. Jude Children's Research Hospital, Memphis, TN; †Department of Psychology, University of Memphis, Memphis, TN.

Objective: Most children with cancer are diagnosed in early childhood, potentially resulting in missed developmental opportunities. The most common diagnoses-brain tumors, leukemia-are also associated with increased risk of neurocognitive deficits. Unfortunately, research regarding the functioning of preschool-aged children with cancer is limited. Our objective is to describe the cognitive and psychosocial functioning of preschool-aged children with cancer who completed a clinical evaluation at a hospital-based psychology clinic.

Methods: Assessment data from 98 preschool-aged children with cancer (M = 5.17 years old, SD = 0.54; 54.1% male) who completed clinically referred evaluations from 2011 to 2015 were abstracted. Because of variability in assessment measures used across clinicians, indicators of cognitive, adaptive, preacademic, and emotional/behavioral functioning were collapsed before analyses.

Results: Children were 2.56 years from diagnosis (SD = 1.46, range 0-5.25 years) and most were off therapy (79.6%). Primary diagnostic categories were represented: brain tumor (68.4%), solid tumor (15.3%), and leukemia (16.3%). Mean IQ scores were significantly below expectations (t[80] = -7.95, p < .001). There were no differences based on diagnostic category, treatment status, or sex. Adaptive functioning (t[73] = -8.42, p < .001) and preacademic skills (t[77] = -6.20, p < .001) were also significantly below expectations. Mean scores on a measure of parent-reported emotional/behavioral functioning were in the average range.

Conclusion: Young children with cancer may be at significant risk of deficits in intellectual, adaptive, and preacademic functioning. Although our sample is biased by those who were referred for clinical evaluations, the severity of deficits highlights the potential vulnerability of young patients, even before most have entered formal school. Interventions-such as hospital-based preschool programs to increase preacademic skills-should be designed that explicitly target preschool-aged children and focus on a wide range of domains.
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http://dx.doi.org/10.1097/DBP.0000000000000512DOI Listing
October 2017

Human Papillomavirus Vaccination Rates in Young Cancer Survivors.

J Clin Oncol 2017 Nov 24;35(31):3582-3590. Epub 2017 Aug 24.

James L. Klosky, Melissa M. Hudson, Kathryn M. Russell, Gina Sabbatini, Jessica S. Flynn, and Leslie L. Robison, St. Jude Children's Research Hospital, Memphis, TN; Yanjun Chen, Liton Francisco, Jocelyn M. York, Smita Bhatia, and Wendy Landier, University of Alabama-Birmingham, Birmingham, AL; James A. Connelly, University of Michigan, Ann Arbor, MI and Vanderbilt University, Nashville, TN; Karen Wasilewski-Masker, Emory University and Children's Healthcare of Atlanta, Atlanta, GA; Can-Lan Sun, Laura Gustafson, and F. Lennie Wong, City of Hope, Duarte, CA; and Anna R. Giuliano, Moffitt Cancer Center, Tampa, FL.

Purpose Cancer survivors are at high risk for human papillomavirus (HPV)-related morbidities; we estimated the prevalence of HPV vaccine initiation in cancer survivors versus the US population and examined predictors of noninitiation. Methods Participants included 982 cancer survivors (9 to 26 years of age; 1 to 5 years postcompletion of therapy); we assessed HPV vaccine initiation, sociodemographic and clinical characteristics, and vaccine-specific health beliefs; age-, sex-, and year-matched US population comparisons were from the National Immunization Survey-Teen and the National Health Interview Survey (2012-2015). Results The mean age at the time of the study was 16.3 ± 4.7 years; the mean time off therapy was 2.7 ± 1.2 years; participants were 55% male and 66% non-Hispanic white; 59% had leukemia/lymphoma. Vaccine initiation rates were significantly lower in cancer survivors versus the general population (23.8%; 95% CI, 20.6% to 27.0% v 40.5%; 95% CI, 40.2% to 40.7%; P < .001); survivors were more likely to be HPV vaccine-naïve than general population peers (odds ratio [OR], 1.72; 95% CI, 1.41 to 2.09; P < .001). Initiation in adolescent survivors (ages 13 to 17 years) was 22.0% (95% CI, 17.3% to 26.7%), significantly lower than population peers (42.5%; 95% CI, 42.2% to 42.8%; P < .001). Initiation in young adult survivors and peers (ages 18 to 26 years) was comparably low (25.3%; 95% CI, 20.9% to 29.7% v 24.2%; 95% CI, 23.6% to 24.9%). Predictors of noninitiation included lack of provider recommendation (OR, 10.8; 95% CI, 6.5 to 18.0; P < .001), survivors' perceived lack of insurance coverage for HPV vaccine (OR, 6.6; 95% CI, 3.9 to 11.0; P < .001), male sex (OR, 2.9; 95% CI, 1.7 to 4.8; P < .001), endorsement of vaccine-related barriers (OR, 2.7; 95% CI, 1.6 to 4.6; P < .001), and younger age (9 to 12 years; OR, 3.7; 95% CI, 1.8-7.6; P < .001; comparison, 13 to 17 years). Conclusion HPV vaccine initiation rates in cancer survivors are low. Lack of provider recommendation and barriers to vaccine receipt should be targeted in vaccine promotion efforts.
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http://dx.doi.org/10.1200/JCO.2017.74.1843DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5662846PMC
November 2017

Provider Influences on Sperm Banking Outcomes Among Adolescent Males Newly Diagnosed With Cancer.

J Adolesc Health 2017 Mar 18;60(3):277-283. Epub 2016 Dec 18.

Department of Surgery, St. Jude Children's Research Hospital, Memphis, Tennessee; Fertility Associates of Memphis, Memphis, Tennessee.

Purpose: The purpose of this study was to examine provider communication and sociodemographic factors which associate with sperm banking outcomes in at-risk adolescents newly diagnosed with cancer.

Methods: A prospective single-group quasi-experimental study design was used to test the contributions of provider factors on sperm banking outcomes. Medical providers (N = 52, 86.5% oncologists) and 99 of their at-risk adolescent patients from eight leading pediatric oncology centers in North America completed questionnaires querying provider factors and patient sperm banking outcomes. Logistic regression with single covariates was used to test each provider factor as a potential correlate of the two binary sperm banking study outcomes (collection attempt/no attempt and successful sperm bank/no bank). Multicovariate logistic regression was used to calculate odds ratios (OR) and 95% confidence intervals (CIs) for specified banking outcomes.

Results: Fertility referral (OR, 9.01; 95% CI, 2.54-31.90; p < .001) and provider comfort/skills in negotiating barriers to sperm banking with families (OR, 1.94; 95% CI, 1.03-3.63; p < .04) were associated with collection attempts. Adolescents who were referred for a specialized fertility consultation were also almost five times more likely to successfully bank (OR, 4.96; 95% CI, 1.54-16.00; p < .01) compared to those who were not.

Conclusions: Provider training in communicating/managing adolescents and their families about sperm banking, and increasing utilization of fertility preservation referrals, should increase the proportion of at-risk males preserving fertility before treatment initiation.
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http://dx.doi.org/10.1016/j.jadohealth.2016.10.020DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5674772PMC
March 2017

A longitudinal investigation of parenting stress in caregivers of children with retinoblastoma.

Pediatr Blood Cancer 2017 04 3;64(4). Epub 2016 Nov 3.

Department of Psychology, St. Jude Children's Research Hospital, Memphis, Tennessee.

Background: Retinoblastoma is typically diagnosed in young children and may present unique parenting challenges. Qualitative research suggests that parents experience distress related to the initial diagnosis and treatment that subsequently resolves. The objectives were to systematically assess parenting stress over time in parents of young children with retinoblastoma and to examine associations between parenting stress and child outcomes.

Procedures: Parents of children with retinoblastoma completed the Parenting Stress Index (PSI) during serial psychological assessments scheduled based on the child's age (6 months to 5 years). Caregivers of 92 patients (85.9% mothers) completed the assessments. Child outcomes included developmental functioning and parent-reported adaptive functioning.

Results: At baseline and age 5, all subscales on the PSI were within normal limits, and most were significantly below normative means (i.e., demonstrating low levels of stress). All domains remained relatively stable over time. Associations between parenting stress and child outcomes were much stronger at age 5 than at baseline. Child-directed parenting stress was a small but significant contributor to declines in child functioning over time.

Conclusions: Parents of children with retinoblastoma report normal levels of parenting stress while their children are young. However, baseline parenting stress appears to contribute to changes in child functioning over time. Future studies should assess illness-related aspects of adjustment to further understand the parenting experience of young children with cancer and/or having a visually impaired child.
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http://dx.doi.org/10.1002/pbc.26279DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5584625PMC
April 2017

Caregiver Sexual and HPV Communication Among Female Survivors of Childhood Cancer.

J Pediatr Oncol Nurs 2016 May-Jun;33(3):199-208. Epub 2015 Dec 14.

St Jude Children's Research Hospital, Memphis, TN, USA

Human papillomavirus (HPV) vaccination is recommended for all female survivors of childhood cancer; yet, it is underused. Parent-child sexual communication and health care provider recommendation for HPV vaccination influence familial vaccination decisions. However, caregivers may be less likely to discuss sexual health issues with survivors as compared to healthy peers. Therefore, this study compared mothers of daughters with/without history of childhood cancer on measures of sexual communication, HPV-specific communication, and health care provider recommendation for HPV vaccination, and examined the effects of sociodemographic and medical factors on these measures. There were no differences between mothers of survivors/noncancer survivors on the outcomes (Ps > .05). Among all mothers, daughter's age was associated with sexual communication (Ps < .05). Household income and daughter's age were associated with health care provider recommendation for vaccination (Ps < .05). Among mothers of survivors, daughter's age at diagnosis was associated with sexual communication, HPV-specific communication, and health care provider recommendation for vaccination (Ps < .05). Findings have implications for the role of health care providers as advocates for mother-daughter sexual communication and HPV vaccination, especially among survivors of childhood cancer.
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http://dx.doi.org/10.1177/1043454215607339DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5790192PMC
December 2016

Prevalence and predictors of human papillomavirus (HPV) vaccination among young women surviving childhood cancer.

J Cancer Surviv 2016 06 16;10(3):449-56. Epub 2015 Nov 16.

Department of Oncology, St. Jude Children's Research Hospital, 262 Danny Thomas Place, Memphis, TN, 38105-2794, USA.

Purpose: Human papillomavirus (HPV) is a sexually transmitted infection and the cause of cervical and other cancers. Vaccination is available to protect against genital HPV and is recommended for individuals aged 9-26 years. This study aimed to estimate the prevalence of HPV vaccination among childhood cancer survivors and to identify factors associated with vaccine outcomes.

Methods: Young adult females with (n = 114; M age = 21.18 years, SD = 2.48) and without (n = 98; M age = 20.65 years, SD = 2.29) a childhood cancer history completed surveys querying HPV vaccination initiation/completion, as well as sociodemographic, medical, and health belief factors. Multivariable logistic regression was used to calculate odds ratios (ORs) and 95 % confidence intervals (CIs) for vaccine outcomes.

Results: Among survivors, 38.6 % (44/114) and 26.3 % (30/114) initiated or completed vaccination compared to 44.9 % (44/98) and 28.6 % (28/98) among controls, respectively. In the combined survivor/control group, physician recommendation (OR = 11.24, 95 % CI 3.15-40.14) and familial HPV communication (OR = 7.28, 95 % CI 1.89-28.05) associated with vaccine initiation. Perceptions of vaccine benefit associated with vaccine completion (OR = 10.55, 95 % CI 1.59-69.92), whereas perceptions of HPV-related severity associated with non-completion (OR = 0.14, 95 % CI 0.03-0.71).

Conclusion: Despite their increased risk for HPV-related complication, a minority of childhood cancer survivors have initiated or completed HPV vaccination. Modifiable factors associated with vaccine outcomes were identified.

Implications For Cancer Survivors: HPV vaccination is a useful tool for cancer prevention in survivorship, and interventions to increase vaccine uptake are warranted.
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http://dx.doi.org/10.1007/s11764-015-0495-2DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4864112PMC
June 2016

Medical and sociodemographic factors associated with human papillomavirus (HPV) vaccination adherence among female survivors of childhood cancer.

Pediatr Blood Cancer 2015 Sep 20;62(9):1630-6. Epub 2015 Apr 20.

Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee.

Background: Among those 9-26 years of age, vaccination can prevent specific types of genital human papillomavirus (HPV), the most common sexually transmitted infection and cause of cervical and other cancers. The objective of this study was to estimate the prevalence of and factors associated with HPV vaccine initiation and completion among females surviving childhood cancer.

Procedure: One-hundred fourteen young adults and 230 mothers with daughters surviving childhood cancer completed surveys querying HPV vaccination history along with medical and sociodemographic factors potentially associated with vaccination outcomes. Vaccination rate differences by age necessitated analysis of outcomes by age group: 9-13 years (preadolescents), 14-17 years (adolescents), and 18-26 years (young adults). Multivariable logistic regression was utilized to identify factors associated with HPV vaccination outcomes.

Results: Overall, 34.6% (119/344) of survivors initiated and 20.9% (72/344) completed HPV vaccination. Preadolescents were least likely to have initiated vaccination (P < 0.001). Physician recommendation was associated with initiation across age groups (OR = 6.81-11.96, Ps < 0.001-.01), whereas older age at diagnosis (≥12 years of age) was associated with lower vaccination initiation among young adults only (OR = 0.28; 95%CI, 0.10-0.76, P = 0.012). Physician recommendation (OR = 7.54; 95%CI, 1.19-47.69, P = 0.032; adolescent group) and greater treatment intensity (OR = 5.25; 95%CI, 1.00-27.61, P = 0.050; young adult group) were associated with vaccine completion, whereas being non-White was associated with decreased vaccination completion (OR = 0.17; 95%CI, 0.05-0.66, P = 0.010; adolescent group).

Conclusions: A minority of youths surviving childhood cancer have initiated or completed HPV vaccination. Strategies to increase vaccination among survivors are discussed.
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http://dx.doi.org/10.1002/pbc.25539DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4834844PMC
September 2015

Changes in sleep and fatigue in newly treated pediatric oncology patients.

Support Care Cancer 2015 Feb 13;23(2):393-401. Epub 2014 Aug 13.

Department of Psychology, St. Jude Children's Research Hospital, 262 Danny Thomas Place, Mail Stop 101, Memphis, TN, 38105, USA,

Background: Fatigue has been reported as one of the most distressing symptoms in oncology patients, yet few have investigated the longitudinal course of sleep and fatigue in newly diagnosed pediatric oncology patients.

Procedure: To longitudinally assess presence and changes of sleep complaints and fatigue, we administered questionnaires designed to measure sleep complaints, sleep habits, daytime sleepiness, and fatigue to parents of pediatric oncology patients ages 2-18 and to pediatric oncology patients, themselves, ages 8-18 within 30 days of diagnosis (n = 170) and again 8 weeks later (n = 153).

Results: Bedtimes, wake times, and sleep duration remained relatively stable across the first 8 weeks of treatment. Sleep duration and fatigue were not related for the entire sample, though children's self-reported sleep duration was positively correlated with fatigue only at the baseline time point. Parent reports of fatigue significantly decreased for leukemia patients but remained rather high for solid tumor and brain tumor patients.

Conclusions: Because fatigue remained high for solid tumor and brain tumor patients across the initial 8 weeks of treatment, this may highlight the need for intervention in this patient population.
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http://dx.doi.org/10.1007/s00520-014-2356-3DOI Listing
February 2015

Fertility as a priority among at-risk adolescent males newly diagnosed with cancer and their parents.

Support Care Cancer 2015 Feb 2;23(2):333-41. Epub 2014 Aug 2.

Department of Psychology, St. Jude Children's Research Hospital, 262 Danny Thomas Place, Memphis, TN, 38105-2794, USA,

Purpose: Infertility is a frequent consequence of cancer therapy and is often associated with psychological distress. Although adult survivors prioritize fertility and parenthood, this issue remains unexplored among adolescent males. This study examined future fertility as a priority (relative to other life goals) at time of diagnosis for at-risk adolescents and their parents.

Methods: Newly diagnosed adolescent males (n = 96; age = 13.0-21.9 years) at increased risk for infertility secondary to cancer treatment prioritized eight life goals: to have school/work success, children, friends, wealth, health, a nice home, faith, and a romantic relationship. Patients' parents (fathers, n = 30; mothers, n = 61) rank-ordered the same priorities for their children.

Results: "Having children" was ranked as a "top 3" life goal among 43.8 % of adolescents, 36.7 % of fathers, and 21.3 % of mothers. Fertility ranked third among adolescents, fourth among fathers, and fifth among mothers. Future health was ranked the top priority across groups, distinct from all other goals (ps < 0.001), and fertility ranked higher than home ownership and wealth for all groups (ps < 0.001). For adolescents, low/moderate fertility risk perception was associated with higher fertility rankings than no/high risk perceptions (p = 0.01).

Conclusions: Good health is the most important life goal among adolescents newly diagnosed with cancer and their parents. In this relatively small sample, adolescents prioritized fertility as a top goal, parents also rated fertility as being more important than home ownership and financial wealth. Health care providers should communicate fertility risk and preservation options at diagnosis and facilitate timely discussion among families, who may differ in prioritization of future fertility.
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http://dx.doi.org/10.1007/s00520-014-2366-1DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4289648PMC
February 2015

Risk factors for non-initiation of the human papillomavirus vaccine among adolescent survivors of childhood cancer.

Cancer Prev Res (Phila) 2013 Oct 27;6(10):1101-10. Epub 2013 Aug 27.

Department of Psychology, St. Jude Children's Research Hospital, 262 Danny Thomas Place, Memphis, TN 38105-2794.

Effective vaccination is now available to prevent human papillomavirus (HPV), the most common sexually transmitted infection and cause of cervical cancer. This study aimed to estimate the prevalence of HPV vaccination among childhood cancer survivors and identify factors associated with HPV vaccine initiation and completion. Mothers of daughters of ages 9 to 17 years with/without a history of childhood cancer (n = 235, Mage = 13.2 years, SD = 2.69; n = 70, Mage = 13.3 years, SD = 2.47, respectively) completed surveys querying HPV vaccination initiation and completion along with sociodemographic, medical, HPV knowledge and communication, and health belief factors, which may relate to vaccination outcomes. Multivariate logistic regression was used to identify factors that associate with HPV vaccination initiation and completion. Among cancer survivors, 32.6% initiated and 17.9% completed the three-dose vaccine series, whereas 34.3% and 20.0% of controls initiated and completed, respectively. Univariate analyses indicated no differences between cancer/no cancer groups on considered risk factors. Among all participants, multivariate logistic regression analyses found vaccine initiation associated with older age of daughter and physician recommendation, whereas increased perceived barriers associated with a decreased likelihood of initiation (all P < 0.05). Among those having initiated, risk factors for noncompletion included being non-White, increased perceived severity of HPV, and increased perceived barriers to vaccination (all P < 0.05). A minority of adolescents surviving childhood cancer has completed vaccination despite their increased risk for HPV-related complication. These results inform the prioritization of strategies to be included in vaccine promotion efforts.
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http://dx.doi.org/10.1158/1940-6207.CAPR-13-0127DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4264381PMC
October 2013

Adaptive style and differences in parent and child report of health-related quality of life in children with cancer.

Psychooncology 2008 Jan;17(1):83-90

St. Jude Children's Research Hospital, Memphis, TN 38105-2794, USA.

The objective of this study was to examine the self-reported health-related quality of life (HRQL) of children with cancer, and the consistency between child and parent reports of child HRQL, as a function of the child's adaptive style. Participants included 199 children with cancer, 108 healthy children, and their parents. Children completed self-report measures of HRQL and adaptive style. Measures of adaptive style were used to categorize children as high anxious, low anxious, defensive high anxious or repressor. Parents completed measures reporting their children's HRQL. Adaptive style was a significant predictor of child-reported HRQL, particularly on the psychosocial scales, with children identified as repressors reporting the best HRQL. Adaptive style was also predictive of discrepancies between parent and child report of child HRQL. Repressor and low anxious children reported better HRQL than did their parents, while high anxious children reported poorer HRQL, regardless of health status. Adaptive style is a significant determinant of self-reported HRQL in children, particularly in psychosocial domains, while health status (i.e. cancer patient vs healthy control) is predictive only of physical health domains. Researchers and clinicians should be aware of the impact of child adaptive style when assessing HRQL outcomes using self- or parent report.
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http://dx.doi.org/10.1002/pon.1195DOI Listing
January 2008

Assessment of health-related quality of life in children with cancer: consistency and agreement between parent and child reports.

Cancer 2006 May;106(10):2267-74

Division of Behavioral Medicine, St. Jude Children's Research Hospital, Memphis, Tennessee 38105-2794, USA.

Background: In pediatric settings, measures of health-related quality of life (HRQL) are often obtained by proxy, especially from parents, but the correlation between parental report and patient report has not been clearly established. In the current study, the authors examined the agreement between child and parent reports of HRQL in children with cancer (both those receiving treatment and those off treatment) and healthy controls.

Methods: Two groups of children with cancer who differed with regard to treatment status (n = 199) and a group of healthy control children (n = 108) were assessed using a standardized measure of HRQL. Both children and parents reported on the child's HRQL using parallel forms of the Children's Health Questionnaire.

Results: Significant parent-child correlations were found for all 10 HRQL scales, and these correlations were higher in the cancer groups compared with controls. Parents in the cancer groups tended to underestimate the HRQL of their children compared with the child report, although there were no significant parent-child mean differences in the group of patients who were off treatment and only 2 significant differences in the group of children receiving treatment. In contrast, parents in the control group tended to overestimate the HRQL of their children, and the parent-child differences were found to be larger, achieving statistical significance on 8 of 10 scales.

Conclusions: Parents and children tend to report comparable child HRQL outcomes, and this is particularly true in oncology populations. In cases in which the child is either too young or too ill to provide a self-report, parent-reported HRQL can be viewed as a reliable substitute.
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http://dx.doi.org/10.1002/cncr.21871DOI Listing
May 2006