CREATE Childhood Cancer Rehabilitation Program development: Increase access through interprofessional collaboration.

BACKGROUND: Cancer and its treatment can lead to functional limitations affecting ongoing development in children and adolescents. We developed a pediatric cancer rehabilitation program that integrates evidence-based rehabilitative care into cancer treatment. The program utilizes the CREATE (collaboration, rehabilitation/research, education, assessment, treatment, evaluation) Childhood Cancer Rehabilitation model. We aim to describe the structural and process components of our rehabilitation program and provide an access and utilization analysis. PROCEDURES: To evaluate the rehabilitation program, we identified new patients with oncologic diagnoses from 2002 to 2019 using our database. To evaluate rehabilitative care, descriptive data, including the timing and type of rehabilitation services utilized within 5 years of a child's diagnosis, were collected and reviewed. Statistical analysis focused on change over time. RESULTS: Among 1974 children assessed, 1580 (80.0%) received care from at least one rehabilitation service. Between 2002 and 2018, the percentage of children receiving rehabilitation services grew significantly throughout all disciplines, except for outpatient speech-language pathology. Utilization differed by age and diagnosis. Integrating therapists in the clinic improved patient access, reduced the time to access outpatient services, and increased the number of attended visits. Additional factors supporting program growth included: identifying leaders, using a prospective surveillance model, education, and program evaluation. CONCLUSION: A multimodal interprofessional approach, such as the CREATE model, improves access to and the efficiency of evidence-based rehabilitation services promoting recovery, ongoing development, and quality of life.

Urban, Low-Income, African American Well-Child Care: Comparison of Parent and Healthcare Provider Experiences and Expectations.

OBJECTIVES: Urban, low-income, African American children and parents report lower quality primary care and face negative social determinants of health. High-quality well-child care is critical for this population. The purpose of this qualitative study was to compare and contrast parent and health care provider experiences of well-child care for urban, low-income, African American families to better understand the complex factors involved in care quality and health outcomes. METHODS: Two data sets were analyzed using conventional content analysis, parent focus group data, and provider interviews. After analysis, results were sorted into similar categories, and convergence coding was completed to identify areas of agreement, partial agreement, dissonance, and silence. RESULTS: Thirty-five parents took part in four focus groups, and nine providers were interviewed. Following convergence coding, five categories and 31 subcategories were identified. The five categories included: social determinants of health, sources of advice and support, challenges with the healthcare system, parent-provider relationships, and anticipatory guidance topics. CONCLUSIONS FOR PRACTICE: Triangulation demonstrated convergence between parents and providers understanding of the concepts and functions of well-child care, however the prominence and meaning varied within each category and sub-category. The variance in agreement, areas of silence, and dissonance shed light on why the population reports lower overall quality primary care.

Urban, Low-Income, African American Parents' Experiences and Expectations of Well-Child Care.

PURPOSE: Well-child care is the foundation of pediatric health promotion and disease prevention. Primary care quality is lower for low-income and African American children compared to white children, and social determinants have an increasingly acknowledged impact on child health. Ensuring that high-quality well-child care fulfills its potential to mitigate the negative effects of social determinants on African American children is imperative. This study provides an understanding of urban, low-income, African American well-child care experiences and expectations. DESIGN AND METHODS: A qualitative, focus group method was used. A purposive, volunteer sample of low-income, African American parents with children birth to age five was recruited from St. Louis and Milwaukee. Focus groups were held in convenient, community sites. Data was audio-digitally recorded. Transcribed data were coded and analyzed through inductive content analysis. RESULTS: Thirty-five caregivers, 86% females, participated in four focus groups. Categories (and sub-categories) identified include: Community factors (We want better schools, It's getting more rough where I live); Sources of parenting advice (Google it, Call your parent, Older remedies); System challenges (Cost, Frequent new faces, Politics); Challenges with providers (Couldn't help me, Missed something important, Treated differently, Are you really listening?); Anticipatory guidance (Breastfeeding, Discipline, Vaccines, Development); and What parents desire (Know them, trust). CONCLUSIONS: This study reveals the contexts that give rise to health care disparities and provides insight into parent's healthcare behaviors. PRACTICE IMPLICATIONS: Results offer providers guidance in providing well-child care for this population to improve pediatric care quality and child health.

Testing the Child PROMIS Physical Activity Measurement in Youth Attending a Large Community Event.

PURPOSE: The study's purpose was to evaluate the concurrent validity of the Child Patient-Reported Outcomes Measurement Information System (PROMIS) PA with the Youth Activity Profile (YAP) and examine its relationship to PROMIS measures of sedentary behavior and fatigue. The PROMIS Pediatric Activity (PA) measure is a newly developed, valid instrument used to collect data on children's lived experiences of short bouts of moderate to rigorous physical activity. METHODS: Participants were ages 8 to 20 years attending a state fair. Child PROMIS measures-PA, Sedentary Behavior, and Fatigue-and the YAP were completed on an iPad. RESULTS: The PROMIS PA and YAP had a positive correlation. The PROMIS PA was not associated with sedentary behavior or fatigue measurements. CONCLUSION: As expected, the PROMIS PA and YAP measure-related PA constructs, the YAP focuses on energy expended while the PROMIS PA indicates perceived response to activity.

Improving body function and minimizing activity limitations in pediatric leukemia survivors: The lasting impact of the Stoplight Program.

BACKGROUND: After acute lymphoblastic leukemia (ALL) treatment, children can have persistent muscle weakness, range of motion limitations, and decreased function after treatment. The Stoplight Program (SLP), a proactive physical therapy intervention, was administered as the standard of care during ALL treatment to prevent and minimize these impairments. The purpose of this follow-up study was to measure body function and activity limitations in ALL survivors who completed the SLP and compare them to a pre-SLP control group, thus evaluating the longer term impact of the SLP. PROCEDURE: Two cohorts of survivors of pediatric ALL ages 5 to 18 years were assessed 18 to 24 months after completing ALL treatment. Measurements included both the body coordination subtest and the strength and agility subtest of the Bruininks-Oseretsky Test of Motor Proficiency, active dorsiflexion range of motion (ADROM), and physical activity by self-report. RESULTS: The control group and SLP group did not differ in size (n = 15), mean age (9 years), or time off ALL treatment (20 months). The SLP group had better scale scores for bilateral coordination (P = 0.05), running speed/agility (P < 0.01), and strength (P = 0.01). The number of survivors with 5 degrees or greater of ADROM (right) was significantly greater in the SLP group. ADROM had a positive correlation with strength/agility standard score in the combined survivor group. CONCLUSION: The SLP is a proactive physical therapy intervention that continues to positively impact children after treatment. Referral to physical therapy should be the standard to optimize long-term function.

Physical Therapist Coaching to Improve Physical Activity in Children With Brain Tumors: A Pilot Study.

PURPOSE: Children with brain tumors (BTs) experience fatigue and decreased quality of life (QOL). Physical activity (PA) is recommended during and after cancer treatment. We explored whether a fitness tracker intervention combined with tailored coaching by a physical therapist (PT) increased PA and QOL and decreased fatigue in children with BTs. METHODS: Participants were 7 to 18 years' old, within 2 years of diagnosis, and received a 12-week PA intervention using a fitness tracker combined with 5 PT coaching sessions. Steps/day measured by Fitbit and self-reports of QOL, fatigue, and PA were evaluated at baseline, 12 weeks, and 24 weeks. RESULTS: Participants had nonsignificant increase in steps/day. Total fatigue, general, and sleep/rest subscales improved while cognitive fatigue and QOL remained unchanged. Higher steps/day were associated with lower fatigue. CONCLUSION: This is a feasible intervention that may contribute to an increase in PA and improve fatigue in children with BTs.

Health-related quality of life in children with congenital adrenal hyperplasia.

BACKGROUND: Children with congenital adrenal hyperplasia (CAH) require life-long glucocorticoid replacement and have daily intermittent hyper/hypocortisolemia and hyperandrogenemia. Health-related quality of life (HRQL) is important for understanding the impact the disease and therapy have on physical, mental, emotional, and social functioning. Little is known about HRQL in CAH. We compared HRQL in children with CAH to healthy norms and examined how these scores related to physiologic variables. METHODS: A cross-sectional study examined 45 patients (mean age 8.2(4.5) years). Thirty-two self-reported their quality of life (QoL) on the PedsQL™ Generic Core Scale and PedsQL™ Fatigue Scale, and 44 parents completed a parent report. Bone age Z-scores were calculated from the most recent bone age. RESULTS: Children with CAH did not report lower QoL than healthy norms. However, their parents reported lower overall QoL and fatigue scores than parents of healthy norms. Children with CAH rated sleep poorer than their parents. QoL scores did not differ by sex or CAH subtype and were not associated with total daily hydrocortisone dose. Bone age Z-scores were negatively associated with child-reported emotional health and cognitive fatigue. CONCLUSIONS: Parents of children with CAH reported a negative impact of disease on their children's QoL, but their children did not. The negative associations between bone age Z-scores and emotional health and cognitive fatigue suggest an impact from chronic hypocortisolemia and hyperandrogenemia.

Use of a Fitness Tracker to Promote Physical Activity in Children With Acute Lymphoblastic Leukemia.

BACKGROUND: Children with cancer identify fatigue as a pervasive symptom, which increases during the corticosteroid pulse in acute lymphoblastic leukemia (ALL) maintenance. The FitBit is a fitness tracker that downloads activity measurements to the Internet in real time. In this feasibility study, we explored if children who received daily FitBit coaching for 2 weeks before a maintenance steroid pulse had an increase in steps per day and determined the relationship between steps per day prepulse and fatigue postpulse. PROCEDURE: Seventeen children in ALL maintenance, aged 6-15, wore the FitBit for 3 days to establish a baseline. A tailored weekly step goal was then set with the child and parent. Daily emails with feedback and FitBit screenshots were sent over the 2-week intervention. Self-report of fatigue was measured at baseline, after 2 weeks (i.e. before the steroid pulse), and after 5 days of steroids. RESULTS: There was a trend toward increased steps per day from weeks 1-2 (P = 0.079); fatigue was low and did not increase during the corticosteroid pulse. A significant correlation (r = -0.66, P = 0.005) was found between the steps per day during week 2 and fatigue after the steroid pulse with higher steps associated with lower fatigue. CONCLUSIONS: The intervention was feasible in this small sample. The average steps each time period (week 1, week 2, and during steroids) was over 10,000, demonstrating that children with ALL can be active during treatment. Physical activity may be protective of fatigue during a corticosteroid pulse.

Effect of an Ankle Foot Orthosis Intervention for Children With Non-Central Nervous System Cancers: A Pilot Study.

PURPOSE: Children with cancer are at risk for physical performance limitations. In this pilot study we investigated the feasibility and initial efficacy of an ankle foot orthosis (AFO) in children with non-central nervous system cancer with peripheral weakness. METHODS: Participants included children aged 5 to 11 years diagnosed with cancer. Children wore AFOs for 1 cycle of chemotherapy. Pre- and postintervention adverse events, adherence, gait, strength, range of motion, activity, and fatigue were measured. RESULTS: Six of 7 children completed the study; none of the 7 reported adverse events. Positive trends were observed in step length (46.23-49.25 cm), dorsiflexion strength (19.25-24.50 lb), ankle dorsiflexion range of motion (0.5-8°), and activity (7850-9857 epochs). Negative trends observed included cadence and fatigue ratings. No change was observed in the 6-minute walk or parent-reported fatigue. CONCLUSIONS: An AFO intervention is feasible in children with cancer. Initial efficacy results warrant further study.

Reflections on the Past Decade in Evidence-Based Practice Within the Children's Oncology Group.

Background: The Children's Oncology Group (COG) is the only National Cancer Institute-supported clinical trials organization focused exclusively on childhood and adolescent cancer research. The COG Nursing Discipline Committee has embedded the tenets of evidence-based practice (EBP) into clinical trials nursing in order to standardize the nursing care delivered to children enrolled on these trials. The COG nursing EBP initiative is aimed at developing evidence-based clinical resources and tools to provide guidance to clinicians regarding topics relevant to the provision of cancer treatment for patients enrolled on COG clinical trials from diagnosis through survivorship. A rigorous, evidence-based process designed to guide development of the evidence-based clinical tools and resources within the COG nursing discipline was developed and was implemented with the first nurse expert team beginning in 2012. Method: The standardized process included (a) selecting EBP projects and nursing expert teams (NETs), (b) providing leadership, mentoring, and championship for NETs; (c) approving clinical content developed through the NETs; and (d) providing guidance and oversight over planned dissemination of the COG EBP projects. Results: The COG Nursing EBP Subcommittee has developed 15 publications to date that include 90 authors. Eleven of these authors contributed to multiple publications. Discussion: On this 10th anniversary of the development of the EBP within the COG nursing discipline, we recognize its contributions to the professional growth of many of the discipline's members and to advances in nursing care for children enrolled in pediatric cancer clinical trials.

The first step to integrating the child's voice in adverse event reporting in oncology trials: a content validation study among pediatric oncology clinicians.

PURPOSE: Children with cancer experience significant toxicities while undergoing treatment. Documentation of adverse events (AEs) in clinical trials is mandated by federal agencies. Although many AEs are subjective, the current standard is clinician reporting. Our long-term goal is to create and validate a self-report measure of subjective AEs for children aged 7 years and older that will inform AE reporting for the National Cancer Institute's Common Terminology Criteria for Adverse Events (CTCAE). This content validation study aimed to identify which of the AEs in the current CTCAE should be included in a pediatric self-report measure. METHODS: We sought expert panel review and consensus among 187 pediatric clinicians from seven Children's Oncology Group institutions to determine which of the 790 AEs are amenable to child self-report. Two survey iterations were used to identify suitable AEs, and clinician agreement estimated by the content-validity ratio (CVR) was assessed. RESULTS: Response rates for surveys 1 and 2 were 72% and 67%, respectively. After the surveys, 64 CTCAE terms met the criteria of being subjective, relevant for use in pediatric cancer trials, and amenable to self-report by a child. The most frequent reasons for removal of CTCAE terms were that they relied on laboratory or clinical measures or were not applicable to children. CONCLUSION: The 64 CTCAE terms will be translated into child-friendly terms as the basis of the child-report toxicity measure. Ultimately, systematic collection of these data will improve care by enhancing the accuracy and completeness of treatment toxicity reports for childhood cancer.

The Relationship of the PROMIS® Pediatric Physical Activity Measure with Cardiorespiratory Fitness.

A The PROMIS® Pediatric Physical Activity (PA) measure is a new instrument with established validity that measures a child self-report on short bouts of moderate to rigorous physical activity. The purpose of this study was to explore the relationship of the PROMIS® Pediatric PA item bank with cardiorespiratory fitness and self-efficacy. The study was conducted at the Minnesota State Fair. Youth ages 8 to 18 years completed the PROMIS® Pediatric PA and the Self-Efficacy for PA measures on an iPad. Participants performed 3-min step test with heart rates measured 1 min posttest. Participants (N = 182) were 53% female. The PROMIS® Pediatric PA had a weak, significant negative correlation with the step test measurement (r = -0.23, p = 0.001) and a weak, significant positive correlation with self-efficacy (r = 0.27, p < 0.001). Measurements did not differ between groups by sex or age group (school-age and adolescent). Youth who were obese had significantly higher heart rates post step test (p = 0.004); BMI percentile groups did not differ in other measures. Self-report of PA and the physiologic measure of heart rate are from two related but different physical fitness domains which supports their significant but weak relationship.

Symptoms, Physical Activity, and Biomarkers in Children at the End of Leukemia Maintenance Therapy.

Background: Symptoms in children with acute lymphocytic leukemia (ALL) change over the trajectory of treatment but little is known about their symptoms as treatment ends. Physical activity may help decrease symptom distress and is vital for ongoing development. The role of biomarkers in symptom science is emerging. The purpose of the study was to explore relationships between self-report of symptoms and physical activity, actigraphy measures, and cerebrospinal fluid (CSF) biomarkers. Methods: Participants were children who were ages 3 to 18 years at the time of ALL diagnosis and were now in the last 12-week cycle of ALL maintenance. Self-reports of fatigue, sleep disturbance, depressive symptoms, and physical activity were completed by participants and parents of younger children. Participants wore a wrist actigraph continuously for the 7 days before other measurements. F2-isoprostanes and interleukin-8 were evaluated in CSF samples. Results: Among the 15 participants, self-report of symptoms and physical activity indicated levels similar to healthy peers. F2-isoprostane had a strong positive correlation with fatigue levels and with depressive symptoms. Fatigue, sleep disturbance, and depressive symptoms positively correlated with each other. Actigraph measures showed children met the CDC guidelines for 60 min of daily moderate to vigorous activity; sleep time was slightly less than healthy norms. Discussion: During maintenance therapy, most children return to healthy norms in symptom burden and physical activity. F2-isoprostane in the CSF is a biomarker for fatigue and depressive symptoms. Children who had persistent symptoms experienced them as a cluster, which confirms previous symptom cluster research.

Cerebellar Mutism Syndrome in Children After Surgery for a Posterior Fossa Tumor: Patient Characteristics and Recovery.

Background: Cerebellar mutism syndrome (CMS) is a potential complication that may be experienced by children undergoing a resection of a posterior fossa tumor. Symptoms include mutism and emotional lability; additional symptoms may include hypotonia, difficulty swallowing, ataxia, and changes in cognition. The recovery of children experiencing CMS symptoms can be variable. In this retrospective chart review study, we identified the presenting characteristics of CMS in a cohort of children and compared them to matched-controls who did not develop CMS and examined recovery patterns during the year after diagnosis. Methods: Patients were identified through the program database. Children between ages 3 and 18 years who had a craniotomy for a posterior fossa tumor at our institution were included. For each CMS case, two control cases were selected to match the type of central nervous system tumor, sex, age group, and surgery date. Patient characteristics were abstracted from the patient's electronic medical record and the CMS survey was used to score CMS cases. Results: Seventeen children with CMS and 34 children without CMS were included in the review. Among children with CMS, 53% experienced mutism for less than 4 weeks; ataxia persisted beyond 4 weeks for more than 88% of the children and was still present in 71% 1 year after diagnosis. Clinical characteristics did not differ between the case and control groups. Discussion: CMS symptoms interfere with the child's quality of life and ongoing development. Study findings inform nurses providing anticipatory guidance and support to patients experiencing CMS and their families.

Symptom Clusters, Physical Activity, and Quality of Life: A Latent Class Analysis of Children During Maintenance Therapy for Leukemia.

BACKGROUND: Children undergoing treatment for acute lymphocytic leukemia (ALL) report co-occurring symptoms of fatigue, sleep disturbances, and depression as a symptom cluster. Physical activity (PA) may influence symptom severity and quality of life (QOL). OBJECTIVES: This study examined changes in symptoms and QOL during ALL maintenance in children categorized by symptom cluster and explored the influence of PA and symptoms on QOL. METHODS: Self-report of fatigue, sleep disturbance, and depression; QOL; and PA were measured at the beginning and end of maintenance in 42 children aged 3 to 18 years with ALL. Children were categorized into symptom cluster groups based on measurements at the beginning of maintenance. RESULTS: Two latent classes of symptom clusters (low and high) were identified with significant differences between groups in symptoms at both the beginning and end maintenance (P < .01). Each group's symptom levels did not change during maintenance. Quality-of-life was different between groups at both time points (P < .01) and did not improve. Children with low symptoms and high PA at the beginning of maintenance had better QOL as treatment ended compared with the physically active high-symptom group and the inactive high-symptom group (P < .01). CONCLUSIONS: Children with higher symptoms did not experience an improvement with time. Symptom and PA levels may influence QOL at the end of treatment. IMPLICATIONS FOR PRACTICE: Maintenance therapy is a long time (1.5 years) in a child's life. Symptom assessment is needed early in maintenance; interventions are needed for children with high levels.

Randomized Clinical Trial of a Self-care and Communication Intervention for Parents of Adolescent/Young Adults Undergoing High-Risk Cancer Treatment: A Report From the Children's Oncology Group.

BACKGROUND: Parents of adolescents and young adults (AYAs) with cancer offer primary support to their children and often experience their own high levels of distress, affecting parent-AYA communication and quality of life. OBJECTIVE: To reduce parent distress and improve communication during high-risk cancer treatment, we examined efficacy of a self-care and communication intervention for parents and indirect benefit for AYAs receiving a therapeutic music video (TMV) intervention. METHODS: In this study, we conducted a multisite, randomized controlled trial with AYAs and parents enrolled as dyads (n = 110). Parents were randomized to intervention or low-dose control; all AYAs received TMV. Data collection occurred at baseline, 2 weeks post intervention (T2), and 90 days post intervention (T3). RESULTS: There were no significant between-group differences on primary outcomes for parents or AYAs. We did find significant differences favoring the parent intervention group on parenting confidence at T2 and marginally better outcomes for family adaptability/cohesion at T3. Both groups exhibited significant within-group improvement for parent distress (state anxiety, T3; perceived stress, T2 and T3; mood, T3), state anxiety (T2) intervention only, and family strengths control group only. Qualitative data demonstrate the parent intervention raised self-awareness and parent confidence in the short term. CONCLUSION: Parents found their intervention helpful. Absence of significant results may be due to short intervention duration, need for tailored content, underpowered sample, and potential indirect parent benefit from AYA participation in TMV. The parent intervention did not provide an indirect benefit for AYAs. IMPLICATIONS FOR NURSING: Parents identified their own need for communication and support from nurses. Nurses can optimize AYA care by attending to parent needs through supportive listening and encouraging self-care.

Parent Caregiving Experiences and Posttraumatic Growth Following Pediatric Hematopoietic Stem Cell Transplant.

Background: Parents of children recovering from hematopoietic stem cell transplant (HSCT) experience significant distress due to unpredictable and potentially life-threatening complications. Distress is heightened by intensive caregiving parents provide the child during the first 100 days after HSCT. Management of distress and adaptation to caregiving responsibilities may be enhanced if parents find benefit in their experiences through posttraumatic growth (PTG), yet little is known about how parents' experiences after HSCT foster PTG. This study aimed to explore how parents experience caregiving and PTG 100 days after children's HSCT. Methods: Thirty-one parents completed semi-structured interviews ∼100 days after children received HSCT. Results: Four major themes emerged from the data to describe parent experiences after HSCT: (1) psychosocial and healthcare contextual factors; (2) cognitive, affective, and social support reactions to HSCT; (3) problem-based, emotion-based, and cognitive coping strategies; and (4) PTG. Discussion: Results increase the understanding of how parents' experiences and caregiving responsibilities contribute to PTG. These findings may guide future research to understand how these experiences influence PTG. Nurses are integral to the parents' experiences. Future work should focus on nursing interventions that enhance positive reinterpretation of parents' experiences after their children's HSCT.

Parental Posttraumatic Growth After Pediatric Hematopoietic Stem Cell Transplant.

Little is known about the development of posttraumatic growth among parents of children with serious advanced disease. The purpose of this study is to describe parental posttraumatic growth 100 days after pediatric stem cell transplant. This is a cross-sectional, descriptive study of 24 parents, approximately 100 days after their children received stem cell transplant. Participants reported environmental, personal, and disease characteristics and completed measures of distress, coping, rumination, and posttraumatic growth. Evidence of parental posttraumatic growth was described in each of 5 dimensions (relating to others, new possibilities, personal strength, spiritual change, and appreciation of life). Posttraumatic growth was positively associated with parental distress, disengagement coping, and rumination measures (r = 0.44-0.47, P < .05). Appreciation of life demonstrated the strongest associations with distress and rumination (r = 0.53-0.61, P < .01). Curvilinear relationships were observed for the association of distress, disengagement coping, and involuntary engagement with posttraumatic growth (P < .05). Study results highlight opportunities for palliative care nurses and clinicians to facilitate opportunities to support parent posttraumatic growth during treatment for children's advanced disease.