Pediatric Rehabilitation Program Research Articles

Combined Exercise and Mindset Training During a Pediatric Cardiac Fitness and Rehabilitation Program Benefits Youth with a Range of Congenital Heart Disease.

Pediatric cardiac fitness and rehabilitation programs vary widely in structure and content. The Cardiac Fitness Program (CFP) is built on traditional training pillars of aerobic, strength, and flexibility, and adds a fourth, training a positive mindset. This study assesses whether the systematic and comprehensive framework of the CFP results in broad benefits for a range of patients with congenital heart disease (CHD). Data from participants between 01/2017 and 12/2022 were analyzed. Pre- and post-CFP cardiopulmonary exercise test parameters, strength and flexibility metrics, and mindset survey results were compared overall, and by sex, age, diagnosis, and hemodynamic level. Of 62 participants (median age 15.5years, range 8 to 23, 50% female), 3% had simple, 37% complex, 24% single ventricle CHD, and 35% arrhythmia, cardiomyopathy, or transplant. Significant improvements were noted in aerobic fitness (mean 9 ± 15% increase in % predicted peak oxygen consumption, p < 0.001). Strength metrics significantly improved (each p < 0.001), as did flexibility (p < 0.001). Patient-reported positive mindset scores did not improve significantly (mean increase 1.8 ± 5.1, p = 0.10, n = 25), whereas parents reported significant improvements (5.9 ± 10.4, p = 0.02, n = 20). Improvements were not significantly different by sex, age, diagnosis, or hemodynamic level. Comprehensive training across four pillars of fitness yields significant improvements in aerobic fitness, strength, flexibility, and parent-reported mindset scores for pediatric CHD patients, regardless of patient characteristics, diagnosis type, or severity of hemodynamic limitation. Further study is warranted into optimal standardization of training and whether a comprehensive approach amplifies individual pillars to create more than the sum of its parts.

When parenteral nutrition is the answer: The case of pediatric intestinal rehabilitation.

In pediatric patients with intestinal failure, parenteral nutrition is lifesaving but also has several associated risks. The goals of intestinal rehabilitation include promoting growth, minimizing complications associated with intestinal failure, and reaching enteral autonomy, if possible. Pediatric intestinal rehabilitation programs are interdisciplinary teams that strive to provide optimal care for children dependent on parenteral nutrition. The provision of parenteral nutrition requires close monitoring of patients' growth, nutrition concerns, clinical status, and laboratory parameters. Recent advances in the field of intestinal rehabilitation include new lipid emulsions, considerations regarding enteral feeding, advances in micronutrient provision, and central venous catheter preservation techniques. Challenges in the field remain, including improving overall quality of life with home parenteral nutrition administration and preventing recently recognized complications such as chronic intestinal inflammation.

Longitudinal Pain Outcomes Following an Intensive Pediatric Pain Rehabilitation Program: Testing Potential Treatment Mechanisms.

This study tested performance measures of physical functioning and pain-related psychosocial measures as potential mechanisms of improvements in outcomes following intensive outpatient interdisciplinary pain rehabilitation for adolescents. We hypothesized that improvements in performance measures of physical functioning, fear of pain, pain catastrophizing, and self-efficacy during treatment would be related to improvements in pain, functional disability, and depressive symptoms. Seventy-seven adolescents, 10 to 18 years old, completed self-report measures before treatment, after the first week, at discharge, and at the 3-month follow-up. Participants completed physical performance measures of physical and exercise capacity and core strength on day 1, after the first week, and at discharge. Linear mixed models were used to examine the association between changes in potential mechanisms and changes in outcomes, adjusting for age, sex, pain duration, and baseline functional disability. Statistically significant improvement in functional disability, pain, and depressive symptoms was demonstrated across the 4 time points. Improvements were also demonstrated in physical performance measures, fear of pain, pain catastrophizing, and self-efficacy. Improvements in pain catastrophizing predicted improvements in functional disability, pain, and depressive symptoms. Improvements in self-efficacy predicted improvements in all outcome variables except depression. Improvements in physical performance measures predicted improvements in some aspects of functional disability and pain, but not depressive symptoms. This study contributes to the growing literature on the effectiveness of pediatric intensive interdisciplinary pain rehabilitation programs and mechanisms that influence improvements in outcomes, an area that is currently underexplored. Results are important to guide future research and inform clinical practice.

Children then, adults now: long-term outcomes-performance at 15, 20, and 25 years of cochlear implant use.

Severe to profound sensorineural hearing loss interferes with a child's development at the cognitive, linguistic, academic, and social levels. Since the beginning of the pediatric auditory rehabilitation program through cochlear implantation in the Ear, Nose, and Throat (ENT) Service of the Coimbra Hospital and University Center (CHUC), Portugal, its mentors defended the early diagnosis of hearing loss followed by timely intervention, and this was considered the starting point to optimize (re)habilitation through this method. Three decades or so later, recently we conducted this study to evaluate the performance of patients implanted in the initial phase of the cochlear implantation program. The study aimed to evaluate the performance of individuals with severe to profound congenital hearing loss who underwent pediatric cochlear implantation and have used the cochlear implant for at least 25 years, to analyze the beneficial effect of early intervention in improving performance results. The study sample is composed of 31 individuals with severe to profound congenital hearing loss and no other comorbidities, divided into two groups (Group 1: age at implantation was under 3 years; Group 2: age at implantation was over 3 years). All 31 subjects were evaluated at 15, 20, and 25 years of cochlear implant (CI) use with a comprehensive set of tests. In addition, data were collected regarding the academic level of each participant. The results of both groups were compared to find out if there is an effect of age at implantation on auditory performance, and if there is an improvement in the performance with CI over time (15, 20, and 25 years of use). The results show that there is a positive effect, with statistical significance, of early implantation on auditory performance, and telephone use. In both groups, there is an increase in performance over time, but it tends to stabilize after 20 years of CI use. The results obtained in this work support the importance of early intervention in patients with severe to profound hearing loss who are cochlear implant users and show that CI is an effective and reliable method in the treatment of these patients, contributing to their improved socio-educational integration, and that the benefits last over time.

Core components of a rehabilitation program in pediatric cardiac disease.

There is increasing effort in both the inpatient and outpatient setting to improve care, function, and quality of life for children with congenital heart disease, and to decrease complications. As the mortality rates of surgical procedures for congenital heart disease decrease, improvement in perioperative morbidity and quality of life have become key metrics of quality of care. Quality of life and function in patients with congenital heart disease can be affected by multiple factors: the underlying heart condition, cardiac surgery, complications, and medical treatment. Some of the functional areas affected are motor abilities, exercise capacity, feeding, speech, cognition, and psychosocial adjustment. Rehabilitation interventions aim to enhance and restore functional ability and quality of life for those with physical impairments or disabilities. Interventions such as exercise training have been extensively evaluated in adults with acquired heart disease, and rehabilitation interventions for pediatric patients with congenital heart disease have similar potential to improve perioperative morbidity and quality of life. However, literature regarding the pediatric population is limited. We have gathered a multidisciplinary team of experts from major institutions to create evidence- and practice-based guidelines for pediatric cardiac rehabilitation programs in both inpatient and outpatient settings. To improve the quality of life of pediatric patients with congenital heart disease, we propose the use of individualized multidisciplinary rehabilitation programs that include: medical management; neuropsychology; nursing care; rehabilitation equipment; physical, occupational, speech, and feeding therapies; and exercise training.

Families' Experiences in the Virtual Hanen More Than Words Program During the COVID-19 Pandemic.

The COVID-19 pandemic required most pediatric rehabilitation programs to shift to a virtual delivery format without the benefits of evidence to support this transition. Our study explored families' experiences participating virtually in More Than Words, a program for parents of autistic children, with the goal of generating new evidence to inform both virtual service delivery and program development. Twenty-one families who recently completed a virtual More Than Words program participated in a semistructured interview. The interviews were transcribed and analyzed in NVivo using a top-down deductive approach that referenced a modified Dynamic Knowledge Transfer Capacity model. Six themes capturing families' experiences with different components of virtual service delivery were identified: (a) experiences participating from home, (b) accessing the More Than Words program, (c) delivery methods and program materials, (d) the speech-language pathologist-caregiver relationship, (e) new skills learned, and (f) virtual program engagement. Most participants had a positive experience in the virtual program. Suggested areas for improvement included the time and length of intervention sessions and increasing social connections with other families. Practice considerations related to the importance of childcare during group sessions and having another adult to support the videorecording of parent-child interactions. Clinical implications include suggestions for how clinicians can create a positive virtual experience for families. https://doi.org/10.23641/asha.22177601.

A survey of inpatient pediatric rehabilitation practices across the United States1.

Objectives included identifying programs that provide pediatric inpatient rehabilitation services (IPRs) across the United States (US), describing differences in location, admission criteria, available resources, personnel and staffing, and populations served between pediatric rehabilitation programs with the overall goal to evaluate rehabilitation needs in geographical areas with limited access for targeted program development. Online survey emailed to pediatric physiatrists who worked or directed IPRs and completed between December 2018 to March 2019. Fifty respondents completed the survey of the seventy-one distributed. Fifty percent of pediatric inpatient rehabilitation services are within a free-standing pediatric hospital with an average of 14 beds. Twenty-eight programs provide acute services with almost half providing accredited specialized programming. All respondents reported that inpatient rehabilitation treatment teams included pediatric physiatry, nursing, social work, and core therapy disciplines. Although characteristics of pediatric inpatient rehabilitation services vary, similarities exist with respect to team composition, clinical coverage, admission or documentation criteria, and outcome measures. The geographic distribution of pediatric IPRs including available specialty programming reveals resource-limited areas. Results from this study emphasize how practice standards or fiscal limitations impact program structure, resources, and ultimately short- and long-term healthcare outcomes among the population of pediatric rehabilitation patients.

Functional neurological symptom disorder: Preliminary findings of factors associated with walking ability post integrative pediatric rehabilitation.

The current study's aims were to (1) examine long-distance walking ability (6-minute walking test [6MWT]) and walking hemodynamic responses (i.e., heart rate) among youth with functional neurological symptom disorder (FNSD) before and after an integrative pediatric rehabilitation (IPR) program; and (2) explore factors predicting improvement in walking ability. Thirty-one youth with FNSD participating in an IPR program were recruited. The IPR program was activated biweekly in an ambulatory format. Study measures included the 6MWT, hemodynamic characteristics, rate of perceived exertion (RPE), pain-intensity perception, and Child's Somatization Inventory-24 (CSI-24). All measures were conducted upon admission to the IPR and discharge. Findings indicated a significant increase in 6MWT distance, as well as decreases in heart rate, RPE, and pain-intensity perception from admission to discharge. At admission, CSI-24 and pain intensity predicted 6MWT distance (adjusted R2 = 0.68). Pain intensity predicted discharge 6MWT distance (adjusted R2 = 0.18). Initial 6MWT predicted changes in 6MWT distance from admission to discharge (adjusted R2 = 0.33). Using an integrative rehabilitation approach increases walking distance and decreases pain-related symptoms in youth with FNSD, emphasizing the need for collaboration between physical therapists and pediatric psychologists. Moreover, changes in walking ability may increase participation and thus should be the focus of IPR.

FORCE Risk Stratification Tool for Pediatric Cardiac Rehabilitation and Fitness Programs.

Risk stratification is required to set an exercise prescription for cardiac rehabilitation, but an optimal scheme for congenital heart disease (CHD) is unknown. We piloted a system based on hemodynamic rather than anatomic factors: function, oxygen level, rhythm, complex/coronary anatomy, and elevated load (FORCE). Feasibility, efficacy, and safety of the FORCE tool were evaluated. Patients < 22years old participating in the Cardiac Fitness Program at Boston Children's Hospital between 02/2017 and 12/2021 were retrospectively analyzed. Assigned FORCE levels, anatomy, adverse events, fitness and exercise test data were collected. Of 63 attempts at FORCE classification, 62 (98%) were successfully classified while one with restrictive cardiomyopathy was not. Thirty-nine (62%) were FORCE 1, 16 (25%) were FORCE 2, and seven (11%) were FORCE 3. Almost half of FORCE 1 patients had simple or complex CHD and the majority of FORCE 2 patients had single ventricle CHD. FORCE 3 patients were more likely to have serious arrhythmias or cardiomyopathy than those in FORCE 1 or 2 (p < 0.001). Postural orthostatic tachycardia syndrome patients appeared in FORCE 1 only. No adverse events occurred over 958 total sessions. The total number of fitness sessions/participant was similar across FORCE levels. It was feasible to risk stratify patients with CHD using a clinical FORCE tool. The tool was effective in categorizing patients and simple to use. No adverse events occurred with fitness training over nearly 1000 exercise training sessions. Adding diastolic dysfunction to the original model may add utility.

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

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. 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 5years of a child's diagnosis, were collected and reviewed. Statistical analysis focused on change over time. 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. 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.

Improving referral rates and utilization of a pediatric cardiac rehabilitation program for patients with congenital and pediatric acquired heart disease

BackgroundCardiac Rehabilitation Programs specifically for young patients with congenital and pediatric acquired heart disease are known to be beneficial but are relatively new. Referral, utilization, and insurance approval rates for a cardiac rehabilitation program that serves pediatric congenital and acquired heart disease populations have yet to be examined, but it is known that cardiac rehabilitation programs for adults with atherosclerotic disease have historically poor utilization. This study evaluated program metrics and barriers to participation for the congenital and pediatric acquired heart disease population. ObjectivesThe purpose of this study was to analyze rates of referral, utilization, and insurance approval as well as capture reasons for attrition. MethodsOutpatients ≥8 years old seen at Boston Children's Hospital with eligible diagnoses were captured from 01/2017 to 12/2020. Referral and participation numbers were compared to the total eligible and analyzed using frequency and percent counts. Patient demographics, diagnoses, insurance providers and authorizations, and reasons for attrition were tracked and analyzed. Results7558 unique patients met eligibility criteria; 175 total patients were referred to the cardiac rehabilitation program yielding a 2 % referral rate. Most of the referrals (69 %) had congenital heart disease (CHD), and the rest had pediatric acquired conditions. Insurance coverage was approved by 91 % of total participants contacted. Out of 175 referred, 75 (43 %) unique patients participated in the program (<1 % utilization rate). The majority (73 %) of participating patients were <21 years old. ConclusionDespite the proven benefit, referral and utilization rates for cardiac rehabilitation for patients with congenital and pediatric acquired heart disease are alarmingly low and up to 35-fold worse than the known low utilization rates for coronary heart disease. Insurance coverage was surprisingly not a barrier, and improving the insurance process and increasing awareness of referring providers emerged as important targets to address.

Utilizing an Interprofessional Team to Develop an Evaluation and Monitoring Outcome Tool for a Pediatric Surgical Rehabilitation Program in Tanzania

ObjectivesTo describe a medical assessment tool developed to track patient outcomes for post-operative, rehabilitative pediatric care in efforts to effectively collect evaluation and monitoring data in a limited resource setting. MethodsThe Plaster House in Arusha, Tanzania partnered with an interdisciplinary academic team (dietetics, nursing, occupational therapy, physical therapy, physician assistant, public health, and social work) from St. Catherine University (St. Paul, MN, USA). Through an 18-month iterative process, the team created an assets map, logic model and evaluation plan. To measure goals in the logic model, an assessment tool was developed to monitor and evaluate patient post-operative recovery for children with cleft lip/palate, spina bifida, skeletal fluorosis, osteomyelitis, burn scar contractures, or clubfoot. Diagnosis-specific indicators were determined collaboratively using evidence-based measures the team agreed would be simple to collect and reliable when different team members collect the measurement. ResultsThe tool evaluates nutritional status, one diagnosis-specific indicator, and three developmental indicators recorded at intake and discharge. For example, a child with spina bifida is evaluated on bladder and bowel continence. If the child is incontinent of bladder or bowel, the tool asks whether management of the incontinence is child managed, parent managed, or not managed. The developmental indicators assess age-appropriate level assessment of everyday tasks, such as activities of daily living, play, and social interaction. ConclusionsThe medical assessment tool serves multiple purposes for the pediatric rehabilitation program, including monitoring participants’ progress, evaluating the effectiveness of current practices, and sharing data with funders.This medical assessment tool has the potential to feasibly capture outcome measurements post-operation on seven correctable disabilities for pediatric rehabilitative care facilities with limited resources. Funding SourcesGHR Foundation.

Outcomes of the First 54 Pediatric Patients on Long-Term Home Parenteral Nutrition from a Single Brazilian Center.

Objectives:Data on multidisciplinary programs dedicated to home parenteral nutrition (HPN) in Latin America are limited. This study describes the results of the first multidisciplinary pediatric intestinal rehabilitation program for HPN at a public tertiary hospital in Brazil.Methods:We retrospectively reviewed patients aged 0–18 years with intestinal failure (IF) who required parenteral nutrition (PN) for >60 days between January/2014 and December/2020.Results:Fifty-four patients were discharged on HPN (15 achieved enteral autonomy, 34 continued on HPN at the end of the study, 1 underwent intestinal transplantation, and 4 died). The median (IQR) age at the study endpoint of patients who achieved enteral autonomy was 14.1 (9.7–19) versus 34.7 (20.4–53.9) months in those who did not achieve enteral autonomy. Overall prevalence of catheter-related thrombosis was 66.7% and catheter-related bloodstream infection rate was 0.39/1000 catheter-days. Intestinal failure-associated liver disease (IFALD) was present in 24% of all patients; none of the patients who achieved enteral autonomy had IFALD. All patients showed significant improvement in anthropometric parameters during the HPN period. The sociodemographic characteristics of the patients’ family members were mothers less than 20 years old (7.5%), schooling time more than 10 years (55.5%), and household income between 1 and 3 times the minimum wage (64.8%). The 5-year survival rate for HPN is 90%, and 27.7% of patients achieve enteral autonomy.Conclusion:The treatment of pediatric patients with IF followed by a multidisciplinary pediatric intestinal rehabilitation program with HPN is feasible and safe in the Brazilian public health system.

The Stoplight Mobility Alert System for Safety and Prevention of Falls in Children With Physical and Cognitive Impairments.

This study aimed to decrease the rate of falls in children with cognitive and physical impairments on a pediatric acute inpatient rehabilitation unit (IRU) using a novel tool, the Stoplight Mobility Alert System (SMAS). We conducted a pilot, prospective, quality improvement study in an 8-bed (increased to 12 beds; October 1, 2019) acute inpatient pediatric IRU at a level 1 trauma center. All patients admitted between October 1, 2012, and October 1, 2020, were included as participants. Interventions used were as follows: (1) SMAS, a colored alert system placed on door slides and in-room for visual cues (red, assistance/hands on; yellow, supervision/eyes on; green, independent/hands off), and (2) handouts and one-on-one education for staff and patients/families. Main outcome measures included fall rate on the IRU. Using the SMAS, the total fall rate decreased from 10.78 to 4.36 falls per 1000 patient-days. Longitudinally, the intrinsic fall rate decreased from 8.36 to 5.60 falls per 1000 patient-days, and the extrinsic fall rate decreased from 4.56 to 1.36 falls per 1000 patient-days. The implementation of the SMAS is effective in decreasing total, intrinsic, and extrinsic fall rates in an acute pediatric inpatient rehabilitation program both acutely and longitudinally.

Limitations of Current Rehabilitation Practices in Pediatric Oncology: Implications for Improving Comprehensive Clinical Care

ObjectiveTo identify the proportion of hospitals/clinics in the United States (US) that have a comprehensive pediatric oncology rehabilitation program and characterize current practices. DesignCross-sectional survey of rehabilitation providers in the US and internationally. SettingElectronic or telephone survey. ParticipantsRehabilitation or supportive care practitioners employed at a hospital, outpatient clinic, or medical university (N=231). InterventionsElectronic and telephone survey. The full electronic survey contained 39 questions, provided opportunities for open-ended responses, and covered 3 main categories specific to pediatric cancer rehabilitation: service delivery, rehabilitation program practices, and education/training. The short telephone survey included 4 questions from the full survey and was designed to answer the primary study objective. Main Outcome MeasuresProportion of hospitals/clinics with a comprehensive pediatric oncology rehabilitation program. ResultsThis cohort includes rehabilitation providers from 191 hospitals/clinics, 49 states within the US, and 5 countries outside of the US. Of hospitals/clinics represented from the full and short survey, 145 (76%) do not have an established pediatric oncology rehabilitation program. Nearly half of full survey respondents reported no knowledge of the prospective surveillance model, and 65% reported no education was provided to them regarding pediatric cancer rehabilitation. Qualitative survey responses fell into 3 major themes: variability in approach to rehabilitation service delivery, program gaps, and need for additional educational opportunities. ConclusionsThere is evidence of limited comprehensive rehabilitation programming for children with cancer as demonstrated by the lack of programs with coordinated interdisciplinary care, variability in long-term follow-up, and absence of education and training. Research is needed to support the development and implementation of comprehensive pediatric oncology rehabilitation programs.

Barriers to completion of a novel pediatric cardiac rehabilitation program

IntroductionPediatric cardiac rehabilitation addresses physical and emotional challenges related to underlying heart disease. While the benefits of cardiac rehabilitation have largely been established, the challenges that patients and their families experience when participating in these programs have yet to be examined in detail. In this study, we evaluated the barriers that families face when asked to complete a structured cardiac rehabilitation program. ObjectivesThe objectives of this study were to measure the success of a novel pediatric cardiac rehabilitation program and to evaluate the barriers that families face when asked to complete a structured cardiac rehabilitation program. MethodsParents of patients referred for cardiac rehabilitation and who attended at least one session were recruited to participate in a phone survey regarding their experience using a published psychometric validation of the cardiac rehabilitation barriers scale. Results9 families participated in the study. 67% of patients were male and 3 patients completed the program in its entirety. Challenges associated with time, travel, and insufficient insurance coverage, were the highest rated barriers to completion of the rehabilitation program. Families universally enjoyed the program. 5 of 9 felt that the biggest positive of the experience was gaining an understanding of what exercise is safe. 3 of 9 stated that cardiac rehabilitation should be a standard component of therapy for all pediatric cardiology patients. ConclusionsPediatric cardiac rehabilitation is effective and liked by families. The barriers to completing a structured in-person program are difficulty getting to appointments due to time and travel and level of insurance coverage for the program. As such, ensuring insurance coverage and perhaps virtual rehab programs would be beneficial.

Anticipated impact of recent ethanol lock shortage and price increase on practice among pediatric intestinal rehabilitation programs across the United States.

Ethanol lock use has been associated with significantly lower rates of central line-associated bloodstream infection (CLABSI) in children with intestinal failure. Concerns have been raised among intestinal rehabilitation program providers regarding the impact of recent changes in cost and availability of ethanol locks in the US. We conducted a survey among the members of the North American Society For Pediatric Gastroenterology, Hepatology & Nutrition Intestinal Rehabilitation Special Interest Group (NASPGHAN IR-SIG) regarding practice changes among providers to tackle this issue and the anticipated effect on CLABSI rates. The results show that the vast majority of US participants use ethanol locks in their population with intestinal failure, with most anticipating or already experiencing reduction in access to ethanol locks. Most worrisome is that more than half of participating programs expect an increase in CLABSI rates in this vulnerable patient population as a consequence of limited access to ethanol locks. Further multicenter prospective studies to assess the efficacy of alternative locking agents, besides ethanol, are needed in order to have readily available and affordable options for CLABSI prevention in the future.

Impact of a paediatric cardiac rehabilitation programme upon patient quality of life.

Cardiac rehabilitation programmes for paediatric patients with congenital heart disease (CHD) have been shown to promote emotional and physical health without any associated adverse events. While prior studies have demonstrated the effectiveness of these types of interventions, there has been limited research into how the inclusion of psychological interventions as part of the programme impacts parent-reported and patient-reported quality of life. Patients between the ages of 7 and 24 years with CHD completed a cardiac rehabilitation programme that followed a flexible structure of four in person-visits with various multidisciplinary team members, including paediatric psychologists. Changes in scores from the earliest to the latest session were assessed regarding exercise capacity, patient functioning (social, emotional, school, psychosocial), patient general and cardiac-related quality of life, patient self-concept, and patient behavioural/emotional problems. From their baseline to final session, patients exhibited significant improvement in exercise capacity (p = 0.00009). Parents reported improvement in the patient's emotional functioning, social functioning, school functioning, psychosocial functioning, cognitive functioning, communication, and overall quality of life. While patients did not report improvement in these above areas, they did report perceived improvement in certain aspects of cardiac-related quality of life and self-concept. This paediatric cardiac rehabilitation programme, which included regular consultations with paediatric psychologists, was associated with divergent perceptions by parents and patients on improvement related to quality of life and other aspects of functioning despite improvement in exercise capacity. Further investigation is recommended to identify underlying factors associated with the differing perceptions of parents and patients.

National Survey of Pediatric Intestinal Rehabilitation Programs in the United States.

Pediatric intestinal rehabilitation (PIR) programs are associated with improved outcomes in children with intestinal failure but remain heterogeneous nationally. This study characterizes PIR program components to aid those seeking to establish or expand a program. Members of the Children's Hospital Association reporting a PIR program to the US News and World Report completed a 14-item questionnaire using the Qualtrics Online Survey Software. Programs were categorized as small or large (≤50 vs >50 patients) and new or established (≤10 vs >10 years). Seventy-one programs were identified and 61 surveys were returned for a response rate of 86%. Majority of programs had gastroenterology, surgery, nutrition, nursing, and social work services involved. Large programs (n = 34; 59%) were more likely to serve as referral centers; have greater participation by nursing, social work, and primary care; have more dedicated time by gastroenterology, surgery, nursing, nutrition, and social work; have more frequent meetings; and have various funding sources (P < .05). Critical components of a PIR program include gastroenterology, surgery, and nutrition services with strong nursing and social work support. These data document the components of modern PIR programs, though further studies on the relationship between program structure and patient outcomes are warranted.

Identifying elements for a comprehensive paediatric cardiac rehabilitation programme.

The aim of this study was to identify relevant content among four important domains for the development and structure of a paediatric cardiac rehabilitation curriculum for young patients with congenital heart disease using a consensus approach. A three-round e-Delphi study among congenital heart disease and paediatric exercise physiology experts was conducted. Round 1, experts provided opinions in a closed- and open-ended electronic questionnaire to identify specific elements necessary for inclusion in a paediatric cardiac rehabilitation programme. Round 2, experts were asked to re-rate the same items after feedback and summary data were provided from round 1. Round 3, the same experts were asked to re-rate items that did not reach consensus from round 2. Forty-seven experts were contacted via e-mail to participate on the Delphi panel, 37 consented, 35 completed round 1, 29 completed round 2, and 28 completed the final round. After round 2, consensus was reached in 55 of 60 (92%) questionnaire items across four domains: exercise training, education, outcome metrics, and self-confidence. This study established consensus towards programme structure, exercise training principles, educational content, patient outcome measures, and self-confidence promotion. By identifying the key components within each domain, there is potential to benchmark recommended standards and practice guidelines for the development of a paediatric cardiac rehabilitation curriculum to be used and tested by exercise physiologists, paediatric and adult congenital cardiologists, and other healthcare team members for optimising the health and wellness of paediatric patients with congenital heart disease.