Journal of Pediatric Rehabilitation Medicine - Volume 8, issue 2

Authors: Agrawal, Rishi

Article Type: Editorial

Abstract: There has been tremendous recent growth in the field of pediatric complex care. Complex care programs are attracting the attention of policy makers at the national level. Key challenges for the field include development of a consensus method to identify children with medical complexity, promotion of high quality research, navigation of health care reform, and measures to promote professional identity and workforce development.

Keywords: Children with medical complexity, children with special needs, health care reform

DOI: 10.3233/PRM-150331

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 8, no. 2, pp. 71-74, 2015

Authors: Johaningsmeir, Sarah A. | Colby, Holly | Krauthoefer, Mary | Simpson, Pippa | Conceição, Simone C.O. | Gordon, John B.

Article Type: Research Article

Abstract: PURPOSE: This study examined the impact of caring for children with medical complexity (CMC) and high resource use on family quality of life (QoL). METHODS: Families of CMC enrolled in a complex care program completed the PedsQL Family Impact module (PedsQL FIM) and Healthcare Satisfaction module (PedsQL HCS) at enrollment then 1 and 2 years after enrollment. Tertiary center resource utilization and staff care coordination time were collected for the two years. RESULTS: PedsQL FIM scores were low at enrollment and did not improve over time. Social Functioning, Worry, and Daily Activities were the …lowest domains. PedsQL HCS scores were higher at enrollment, but also failed to improve over the two years. Changes in resource use were not associated with changes in PedsQL FIM or HCS scores. Staff care coordination time was highest for patients with ≥ 10 hospital days per year. CONCLUSION: CMC families' low QoL did not appear to be related to healthcare satisfaction or a shift from inpatient to outpatient resource use. Less staff support for families of CMC who spent more time at home may have contributed to their continued low QoL. Further study is required to identify causes of and strategies for improving the low QoL of families of CMC. Show more

Keywords: Children with medical complexity, complex care, quality of life, family impact

DOI: 10.3233/PRM-150321

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 8, no. 2, pp. 75-82, 2015

Authors: Dodds, Cindy B. | Bjornson, Kristie F. | Sweeney, Jane K. | Narayanan, Unni G.

Article Type: Research Article

Abstract: PURPOSE: To investigate the impact of a 5-week supported physical activity (PA) intervention on parental report of health-related quality of life (HRQL) in children with medical complexity (CMC). METHODS: Twenty-nine CMC participated in 180 minutes of supported PA daily. A pre- and post-test design was used to assess HRQL total and domain scores as reported by parents. The relationship between supported PA duration and HRQL was also examined. RESULTS: Children with medical complexity experienced no adverse effects with the supported PA intervention. Significant improvements in HRQL scores (P < 0.05) were demonstrated. A 5- …to 8-point HRQL improvement occurred when CMC engaged in an average of 40 minutes of PA daily. CONCLUSION: Short-term, supported PA enhanced parental report of HRQL in children with medical complexity. Supported PA appears safe for CMC and rehabilitation therapists should explore methods to expand opportunities for participation. Show more

Keywords: Children with medical complexity, health-related quality of life, quality of life, physical activity

DOI: 10.3233/PRM-150322

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 8, no. 2, pp. 83-95, 2015

Authors: Ellzey, Allison | Valentine, Karen J. | Hagedorn, Caroline | Murphy, Nancy A.

Article Type: Research Article

Abstract: PURPOSE: To describe parent perceptions of their child's quality of life (QOL) and their satisfaction with health care for a group of children with medical complexity (CMC), and to determine whether parent perceptions of child well-being are associated with QOL and health care satisfaction. METHODS: Participants were parents or legal guardians of children enrolled in a novel program of intensive outpatient care for CMC. Participants completed 7-item questionnaires to ascertain their perceptions of their child's well-being, QOL and health care satisfaction. RESULTS: One hundred and ninety-one participants completed questionnaires (response rate 100%). 85% …rated their child's QOL as excellent, very good, or good. 87% reported satisfaction with their child's health care. Fair or poor mental health was associated with fair or poor QOL (OR 1.09, p= 0.0002). More pain was associated with lower QOL (OR 1.07, p= 0.0022). Fewer days of play or school attendance were associated with lower satisfaction with health care (OR 1.09, p= 0.0003). CONCLUSION: Our study suggests that more pain and worse mental health are associated with parental perceptions of the quality of life for their CMC. Clinicians who care for these children and their families should carefully and repeatedly assess for these important symptoms. Show more

Keywords: Children with medical complexity, quality of life, healthcare satisfaction, chronic pain, mental health

DOI: 10.3233/PRM-150323

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 8, no. 2, pp. 97-104, 2015

Authors: Meier, Jeremy D. | Valentine, Karen J. | Hagedorn, Caroline | Hartling, Christine | Gershan, William | Muntz, Harlan R. | Murphy, Nancy A.

Article Type: Research Article

Abstract: PURPOSE: To characterize high emergency department (ED) use by children with tracheostomies and complex chronic conditions, to distinguish avoidable from unavoidable ED visits, and to describe the financial impact of avoidable visits. METHODS: Children with tracheostomies in a pediatric tertiary care center with the highest ED utilization were identified via analysis of administrative data. Six experts in interdisciplinary dyads reviewed the records from all ED visits for these children, and distinguished avoidable from unavoidable visits. Hospital cost data for avoidable visits is described. RESULTS: Among 75 children with tracheostomies and complex chronic conditions, 23 …(31%) were high ED utilizers. These 23 children accounted for 74% of all ED discharges the total group of 75 children from 2008 to 2011. Four of these 23 children with high utilization were excluded, leaving 19 subjects for review. These 19 children had 312 ED visits, of which 103 (33%) were deemed avoidable. Leading reasons for avoidable visits were uncomplicated upper respiratory infections, gastrointestinal infections, and enteral feeding system problems. Avoidable visits cost the hospital {$}67,940. CONCLUSIONS: One-third of ED visits by children with tracheostomies and complex chronic conditions may be avoidable. Increased ambulatory access to interdisciplinary teams of providers familiar with these children's unique needs might reduce avoidable ED visits and improve health outcomes. Further studies on how this model of ambulatory care might affect ED utilization and total healthcare costs are needed. Show more

Keywords: Child, tracheostomy, emergencies

DOI: 10.3233/PRM-150324

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 8, no. 2, pp. 105-111, 2015

Authors: Keilty, Krista | Cohen, Eyal | Ho, Michelle | Spalding, Karen | Stremler, Robyn

Article Type: Research Article

Abstract: PURPOSE: Society relies on family caregivers of children who depend on medical technology (e.g. mechanical ventilation), to provide highly skilled and vigilant care in their homes 24 hours per day. Sleep disturbance is among the most common complaints of these caregivers. The purpose of this review is to systematically examine studies reporting on sleep outcomes in family caregivers of technology dependent children. METHODS: All relevant databases were systematically searched: MEDLINE, EMBASE, PsycINFO and CINAHL. Given the heterogeneity of the studies, a qualitative analysis was completed and thus results of this review are presented as a narrative. …RESULTS: Thirteen studies were retrieved that met eligibility criteria for inclusion. All of the studies reported on family caregivers of children with medical complexity living at home. Moreover, all of the studies relied entirely on self-report, not objective sleep measures. No intervention studies were found. Sleep disturbance was found to be common (51-100%) along with caregiver reports of poor sleep quality. Sleep quantity was seldom measured, but was found in the few studies that did, to be approximately 6 hours, or less than recommendations for optimal health and daytime function. Multiple caregiver, child and environmental factors were also identified that may negatively influence caregiver sleep, health and daytime function. CONCLUSION: Findings of this review suggest that family caregivers of children with medical complexity who depend on medical technology achieve poor sleep quality and quantity that may place them at risk of the negative consequences of sleep deprivation. Recommendations for practice include that health care providers routinely assess for sleep disturbance in this vulnerable population. The review also suggests that studies using objective sleep measurement are needed to more fully characterize sleep and inform the development of targeted interventions to promote sleep in family caregivers of technology dependent children. Show more

Keywords: Children with medical complexity, family caregiver, sleep, technology dependent, systematic review, pediatrics

DOI: 10.3233/PRM-150325

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 8, no. 2, pp. 113-130, 2015

Authors: Braddock, Mary E. | Leutgeb, Virginia | Zhang, Lei | Koop, Steven E.

Article Type: Research Article

Abstract: PURPOSE: To describe recurrent admissions in a cohort of complex chronic patients at a specialty children's hospital, identify factors that contribute to multiple admissions, and test the hypothesis that risk factors predict patterns of readmissions within specified time intervals. METHODS: Retrospective cohort analysis of patients admitted to a specialty children's hospital during calendar year 2006 followed through 2011. Administrative and medical record abstracted data were analyzed by the total number of recurrent admissions and by readmissions with 7, 30 and 90 days at any point during the five year study period. RESULTS: One thousand …two hundred and twenty-nine patients with 2295 inpatient admissions were examined. %467 Four hundred and sixty-seven patients (38%) experienced at least one additional inpatient admission at any time during the study period. Eight variables were significant risk factors for subsequent admission at any time during the study period: indwelling technology, mobility support, critical care consultation, medical (vs. surgical) admission, mean LOS across all admissions, number of scheduled medications at discharge, insurance on index admission, and gross charges on index admission. Presence of indwelling technology, increasing numbers of scheduled medications at discharge and Nervous System APR-DRG diagnoses were significant factors predicting readmission within 7, 30, and 90 day intervals. CONCLUSIONS : Within this population of complex chronic patients risk factors were identified that predict vulnerability to recurrent admissions suggesting that further research is needed to address a unique subset of complex chronic patients and the complement of systems organized to provide health care delivery services for them. Show more

Keywords: Recurrent admissions, complex chronic condition, readmission, children with disabilities, specialty hospitals, risk factors, predictors

DOI: 10.3233/PRM-150326

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 8, no. 2, pp. 131-139, 2015

Authors: Sbrocchi, Anne Marie | Millar, Catherine | Henin, Catherine | Allard, Manon | Patel, Hema

Article Type: Research Article

Abstract: PURPOSE: There are increasing numbers of children with chronic, complex conditions requiring comprehensive care, however post-graduate training in this field is limited. Lack of training may contribute to reticence in engaging with their care. Although children with medical complexity (CMC) are heterogeneous, their care needs are similar. We aimed to address a lack of explicit training via a standardized curriculum. As an initial step, a collaborative needs assessment of key content was developed. METHODS: An on-line survey with drafted learning objectives was sent to professionals skilled in complex care. Participants indicated if an objective should be …obtained by the end of Junior residency (PGY2), Senior residency (PGY4), or not at all. RESULTS: Eighty-two Canadian and US professionals participated; 60.3% practiced in a University Health Centre and 60% cared for CMC and participated in pediatric postgraduate education. Over 80% felt that the medical home concept should be understood by the end of PGY2, and that trainees should develop a care plan by the end of PGY4. CONCLUSION: This needs assessment supported the learning objectives and provided information on the expected competency time line for knowledge and skill acquisition. Additional comments will be used to revise the objectives. Show more

Keywords: Complex care, curriculum, post-graduate trainees, needs assessment, pediatrics

DOI: 10.3233/PRM-150327

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 8, no. 2, pp. 141-146, 2015

Authors: Suresh, Swetha | Huxol, Heather G. | Morton, Ronald L.

Article Type: Research Article

Abstract: PURPOSE: Prolonged mechanical ventilation (PMV) in medically fragile children is commonly used in pediatric long term extended care facilities (P-LTEC). Currently, PMV weaning is performed in an unstandardized fashion. Without an official protocol, patients are subjected to delayed weaning, infection, increased mortality, and difficulty obtaining placement at adult group homes. A step-wise approach may help these children wean from PMV effectively. METHODS: A retrospective chart review of five tracheostomized children with bronchopulmonary dysplasia was conducted. RESULTS: A 5-step weaning protocol was created using data collected retrospectively. First, pressure control ventilator settings were decreased until …rate = 10, fraction of inspired oxygen = 30% and pressure support = 6-10. Second, continuous positive airway pressure (CPAP) was trialed while awake with ventilator at night. Third, CPAP was continued for 24 hours. Fourth, tracheostomy collar (TC) was trialed while awake, with CPAP at night. Lastly, TC was continued for 24 hours. Advancing to Step 2 required the most time, likely secondary to episodic illnesses, with a mean of 31.2 months. The process required 3.2 months to advance to Step 3, 1.6 months to achieve Step 4, and 2.6 months to attain Step 5. CONCLUSION: Using the data obtained in this case series an official protocol could be created to wean P-LTEC residents from PMV, with reasonable expectations of the process. Show more

Keywords: Mechanical ventilation, weaning, pediatric long term extended care facilities, medically fragile children, bronchopulmonary dysplasia

DOI: 10.3233/PRM-150328

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 8, no. 2, pp. 147-156, 2015

Authors: O'Brien, Jane E. | Dumas, Helene M. | Leslie, David

Article Type: Research Article

Abstract: PURPOSE: To describe characteristics and care outcomes in a pediatric post-acute rehabilitation hospital for infants with Neonatal Abstinence Syndrome (NAS). METHODS: Demographic and clinical data were combined for 43 infants accounting for 46 admissions over a two-year period with a diagnosis of NAS and a goal of weaning from treatment medications. RESULTS: Mean age at admission for the total sample was 21 days. One hundred percent of the infants were weaned from treatment medications at discharge and all infants were discharged to a home setting. Mean length of stay in post-acute care was 24 …days (SD = 12.80; range = 4-70 days) while the mean cost of admissions was $27,904. Ninety-one percent had a public payer. Post-acute care clinical outcomes were excellent. CONCLUSION: Post-acute care for infants with NAS could be an effective way to free NICU beds and reduce hospital costs for this population of infants. Show more

Keywords: Infant, newborn, abstinence syndrome, neonatal, outcome, hospital

DOI: 10.3233/PRM-150330

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 8, no. 2, pp. 157-160, 2015