Risk Factors for Tube Feeding at Discharge in Infants Undergoing Neonatal Surgery for Congenital Heart Disease: A Systematic Review.

Approximately 30-50% of infants undergoing neonatal surgery for congenital heart disease (CHD) cannot meet oral feeding goals by discharge and require feeding tube support at home. Feeding tubes are associated with increased readmission rates and consequent hospital, payer, and family costs, and are a burden for family caregivers. Identification of modifiable risk factors for oral feeding problems could support targeted care for at-risk infants. Therefore, the aim of this systematic review is to determine risk factors for tube feeding at discharge in infants undergoing neonatal surgery for CHD. Following Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) guidelines, a search was conducted using MEDLINE, CINAHL, and Cochrane Database of Systematic Reviews. Studies published before 2010 were excluded. The search resulted in 607 records, of which 18 were included. Studies were primarily retrospective cohort designs and results were often inconsistent. Study quality was assessed using the Joanna Briggs Critical Appraisal Tools. As a group, the studies exhibited substantial risk for bias. Based on the findings, infants who struggle with feeding preoperatively, experience increased nil per os duration and/or low oral feeding volume postoperatively, experience increased duration of mechanical ventilation, or have vocal cord dysfunction may be at risk for tube feeding at hospital discharge. Factors warranting further examination include cardiac physiology (e.g., aortic arch obstruction) and the relationship between neurodevelopment and oral feeding. Clinicians should use caution in assuming risk for an individual and prioritize early implementation of interventions that facilitate oral feeding development.

Wayfinding through the "ocean of the great unknown": how lactating parents establish a direct breastfeeding relationship with an infant with critical CHD.

INTRODUCTION: Lactating parents of infants hospitalised for critical congenital heart disease (CHD) face significant barriers to direct breastfeeding. While experiences of directly breastfeeding other hospitalised neonates have been described, studies including infants with critical CHD are scarce. There is no evidence-based standard of direct breastfeeding care for these infants, and substantial practice variation exists. AIM: To explain how direct breastfeeding is established with an infant hospitalised for critical CHD, from lactating parents' perspectives. MATERIALS & METHODS: This study is a qualitative grounded dimensional analysis of interviews with 30 lactating parents of infants with critical CHD who directly breastfed within 3 years. Infants received care from 26 United States cardiac centres; 57% had single ventricle physiology. Analysis included open, axial, and selective coding; memoing; member checking; and explanatory matrices. RESULTS: Findings were represented by a conceptual model, "Wayfinding through the 'ocean of the great unknown'." The core process of Wayfinding involved a nonlinear trajectory requiring immense persistence in navigating obstacles, occurring in a context of life-and-death consequences for the infant. Wayfinding was characterised by three subprocesses: navigating the relationship with the healthcare team; protecting the direct breastfeeding relationship; and doing the long, hard work. Primary influencing conditions included relentless concern about weight gain, the infant's clinical course, and the parent's previous direct breastfeeding experience. CONCLUSIONS: For parents, engaging in the Wayfinding process to establish direct breastfeeding was feasible and meaningful - though challenging. The conceptual model of Wayfinding explains how direct breastfeeding can be established and provides a framework for research and practice.

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.

The Canadian Occupational Performance Measure: a Feasible Multidisciplinary Outcome Measure for Pediatric Telerehabilitation.

This study describes the feasibility of using the Canadian Occupational Performance Measure (COPM) as a multidisciplinary outcome measure for pediatric telerehabilitation (TR). The COPM was administered at monthly time points over four months. A follow-up survey was conducted with the therapists to assess clinical utility of the COPM. Seventy-three percent of the children seen in TR > one month had at least two administrations of the COPM. Eighty percent of therapists agreed or strongly agreed that the COPM was easy to use in a reasonable amount of time, helped identify functional goals, could be used with various children with varied diagnoses, and measured functional change. In 37 children, the median clinical change in performance and satisfaction was two points or greater on the COPM over the episode of TR. The COPM is a feasible measure perceived positively by pediatric therapists for TR use.

Kids Are Moving: A Physical Activity Program for Children With Cancer.

Children undergoing cancer treatment are less active than healthy peers. Inactivity persists into survivorship, negatively influencing health and quality of life. Fatigue is one of the most prevalent symptoms during treatment yet children with increased physical activity (PA) have less fatigue. This pilot study evaluated the impact of coaching on PA and fatigue in children undergoing cancer treatment delivered by pediatric oncology nurse practitioners (NPs) during routine clinic visits. NPs used motivational interviewing during clinic visits to coach children and their families on strategies to increase PA at home. Self-report measures of PA and fatigue were completed at treatment months 2, 4, and 6. PA was also measured using actigraphy. Among 30 children ages 6 to 18 years, 7 had acute lymphoblastic leukemia (ALL), 11 had lymphoma, and 12 had solid tumors. Patterns of fatigue were different by disease group with trends to fatigue decreasing during treatment in the patients with ALL (p = .09) and lymphoma (p = .13) but increasing in those with solid tumors (p = .06). Self-report PA was unchanged. Actigraph measurements remained stable for the group. NPs reported time challenges in implementing coaching during the clinic visit and in providing coaching continuity. The intensive, repeating chemotherapy cycles in solid tumor treatment may contribute to increasing fatigue. Treatment intensity decreases during ALL and lymphoma treatment, which may allow for improvement in fatigue. Inactivity persisted during treatment but did not progress. Future research is needed to evaluate more "dose-intensive" PA interventions in larger samples of specific disease groups.

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.

Short-Term Recovery of Balance Control: Association With Chemotherapy-Induced Peripheral Neuropathy in Pediatric Oncology.

PURPOSE: To describe the incidence and short-term recovery of balance control in children and adolescents receiving neurotoxic treatment for noncentral nervous system cancers and to investigate the association of chemotherapy-induced peripheral neuropathy and balance control. METHODS: Sixty-five children and adolescents diagnosed with leukemia, lymphoma, or other solid tumors were tested 3 to 6 months into treatment and 3 and 6 months following treatment using the Bruininks-Oseretsky Balance Subscale and Pediatric Modified Total Neuropathy Scale scores of chemotherapy-induced peripheral neuropathy (CIPN). RESULTS: Seventy-eight percent of the participants scored 1 standard deviation or more below population means on the balance subscale while on treatment, and this improved to 53% by 6 months posttreatment, with the leukemia group performing worse at both time points. On-treatment balance scores were moderately associated with motor CIPN, while at 6 months posttreatment they were more closely associated with sensory CIPN. CONCLUSIONS: Mild to moderate balance impairments improve but can persist, even when CIPN has improved, 6 months after treatment for childhood cancer.

Short-term recovery of chemotherapy-induced peripheral neuropathy after treatment for pediatric non-CNS cancer.

PURPOSE: Chemotherapy-induced peripheral neuropathy (CIPN) is a frequent side effect of pediatric cancer treatment. The presentation of CIPN, trajectory and completeness of recovery over the first 6 months postchemotherapy, and the influence of patient and treatment characteristics on recovery are described. PATIENTS AND METHODS: Sixty-seven children and adolescents treated for non-CNS cancers were evaluated for CIPN using the pediatric modified total neuropathy score (ped-mTNS) while on treatment and 3 and 6 months postchemotherapy. Differences between diagnostic groups and treatment type were evaluated as well as change in scores over time. Risk factors for on-treatment and persistent CIPN at 6 months were identified. RESULTS: Overall, ped-mTNSs were in the abnormal range for 86.5% during treatment and scores decreased over time (initial 9.3 ± 0.6, 6 months 4.3 ± 0.4; F = 38.14, P < 0.001). By 6 months posttreatment, mean scores and percentage of children with abnormal scores were reduced to 2.4 ± 0.3 and 11.5%, respectively, in the ALL group, but remained higher at 5.7 ± 0.7 and 57%, respectively, for lymphoma, and 5.2 ± 1.0 and 60%, respectively, for other solid tumors. At 6 months posttreatment, light touch deficits and foot strength deficits remained in 19.4 and 59.7%, respectively, compared with only 4.9 and 9.8% of the control population. Subjects who were older at exposure, female, or who received etoposide in addition to vincristine were at higher risk for on-treatment CIPN. On-treatment sensory abnormalities were associated with increased risk of persistent CIPN. CONCLUSION: While CIPN improves in most pediatric patients, significant numbers, especially those treated for lymphoma or other solid tumors, have remaining neuropathic signs and symptoms 6 months posttreatment.

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.