Special Healthcare Needs

Adherence to clinic recommendations among patients with phenylketonuria in the United States  E.R. Jurecki et al., Molecular Genetics and Metabolism, March 2017

Adherence to hydroxyurea, health-related quality of life domains, and patients' perceptions of sickle cell disease and hydroxyurea: A cross-sectional study in adolescents and young adults  S.M. Badawy et al., Health and Quality of Life Outcomes, July 2017

Adolescents and young adults with chronic or end-stage kidney disease  M.E. Ferris et al., Blood Purification, January 2016

Are expectations too high for transitioning adolescents with inflammatory bowel disease? Examining adult medication knowledge and self-management skills  L.N. Fishman et al., Journal of Pediatric Gastroenterology and Nutrition, November 2016

Are two youth-focused interventions sufficient to empower youth with chronic health conditions in their transition to adult healthcare: A mixed-methods longitudinal prospective cohort study  J.W. Gorter et al., BMJ Open, May 2015

At 16, she's a pioneer in the fight to cure sickle cell disease  G. Kolata, Washington Post, January 11, 2020

Barriers and facilitators for mental healthcare in pediatric lupus and mixed connective tissue disease: A qualitative study of youth and parent perspectives  A.M. Knight et al., Pediatric Rheumatology Online Journal, November 2015

Can psychiatric childhood disorders be due to inborn errors of metabolism?  A. Simons et al., European Child & Adolescent Psychiatry, February 2017

Caring for people with severe myalgic encephalomyelitis: An interpretative phenomenological analysis of parents' experiences  M. Mihelicova et al., Journal of Health Psychology, December 2016

Childhood Arthritis and Rheumatology Research Alliance consensus clinical treatment plans for juvenile dermatomyositis with skin predominant disease  S. Kim et al., Pediatric Rheumatology Online Journal, January 2017

Children and youth with non-traumatic brain injury: A population based perspective  V. Chan et al., BMC Neurology, July 2016

Children with chronic conditions: Perspectives on condition management  B.L. Beacham & J.A. Deatrick, Journal of Pediatric Nursing, February 2015

Chronic conditions and health care needs of adolescents born at 23 to 25 weeks' gestation  A. Holsti et al., Pediatrics, February 2017

Clinical and economic burden of mental disorders among children with chronic physical conditions, United States, 2008-2013  M.S. Suryavanshi & Y. Yang, Preventing Chronic Disease, May 2016

Cord blood adipokines and lipids and adolescent nonalcoholic fatty liver disease  J. Simpson et al., Journal of Clinical Endocrinology and Metabolism, December 2016

Decreased fetal hemoglobin over time among youth with sickle cell disease on hydroxyurea is associated with higher urgent hospital use  N.S. Green et al., Pediatric Blood and Cancer, December 2016

Determining the longitudinal validity and meaningful differences in HRQL of the PedsQL™ Sickle Cell Disease Module  J.A. Panepinto et al., Health and Quality of Life Outcomes, June 2017

Early childhood lung function is a stronger predictor of adolescent lung function in cystic fibrosis than early Pseudomonas aeruginosa infection  J.E. Pittman et al., PLoS One, May 2017

Effects of nutritional intake on disease severity in children with sickle cell disease  V. Mandese et al., Nutrition Journal, April 2016

Elevated prostaglandin E metabolites and abnormal plasma fatty acids at baseline in pediatric cystic fibrosis patients: A pilot study  M.G. O'Connor et al., Prostaglandins, Leukotrienes, and Essential Fatty Acids, October 2016

Evidence of microvascular dysfunction in patients with cystic fibrosis  P. Rodriguez-Miguelez et al., American Journal of Physiology. Heart and Circulatory Physiology, June 2016

Executive functioning profiles from the BRIEF across pediatric medical disorders: Age and diagnosis factors  L.S. Krivitzky et al., Child Neuropsychology, July 2016

Facilitating pediatric patient-provider communications using wireless technology in children and adolescents with sickle cell disease  E. Jacob et al., Journal of Pediatric Health Care, August 2013

Family-provided health care for children with special health care needs  J.A. Romley et al., Pediatrics, January 2017

FDA approves hydroxyurea tablets for pediatric patients with sickle cell anemia  M. Hoffman, MD Magazine, March 15, 2018

Fibroblast growth factor 23 and risk of CKD progression in children  A.A. Portale et al., Clinical Journal of the American Society of Nephrology, November 2016

Financial and social hardships in families of children with medical complexity  J. Thomson et al., Journal of Pediatrics, May 2016

Genetic modifiers of white blood cell count, albuminuria and glomerular filtration rate in children with sickle cell anemia  B.A. Schaefer et al., PLoS One, October 2016

Health care transitions among youth with disabilities or special health care needs: An ecological approach  G. Wang et al., Journal of Pediatric Nursing, December 2010

Health inequity in children and youth with chronic health conditions  J.G. Berry et al., Pediatrics, December 2010

Health-related Internet use by informal caregivers of children and adolescents: An integrative literature review  E. Park et al., Journal of Medical Internet Research, March 2016

High-dose cyclophosphamide is effective therapy for pediatric severe aplastic anemia  C.J. Gamper et al., Journal of Pediatric Hematology/Oncology, November 2016

HIV healthcare transition outcomes among youth in North America and Europe: A review  V. Tepper et al., Journal of the International AIDS Society, May 2017

Immunogenicity of human papillomavirus recombinant vaccine in children with CKD  D.R. Nelson et al., Clinical Journal of the American Society of Nephrology, May 2016

Inequities in health care needs for children with medical complexity  D.Z. Kuo et al., Health Affairs, December 2014

Integrating an EMR-based transition planning tool for CYSHCN at a children's hospital: A quality improvement project to increase provider use and satisfaction  C.M. Wiemann et al., Journal of Pediatric Nursing, October 2015

IV-treated pulmonary exacerbations in the prior year: An important independent risk factor for future pulmonary exacerbation in cystic fibrosis  D.R. VanDevanter et al., Journal of Cystic Fibrosis, May 2016

Kids with costly medical issues get help, but not enough  J. Gold, Shots: Health News from NPR, August 26, 2013

Kids with sickle cell disease and sleep apnea at higher risk of complications, study finds  A. Melão, Sickle Cell Anemia News, July 10, 2018

Longitudinal trends in race/ethnic disparities in leading health indicators from adolescence to young adulthood  K.M. Harris et al., Archives of Pediatrics & Adolescent Medicine, January 2006

Lung function at 8 and 16 years after moderate-to-late preterm birth: A prospective cohort study  P. Thunqvist et al., Pediatrics, April 2016

Lysosomal acid lipase deficiency unmasked in two children with nonalcoholic fatty liver disease  R.W. Himes et al., Pediatrics, October 2016

Malnutrition ups risk of postop issues in pediatric Crohn disease  HealthDay News, December 26, 2018

Many U.S. kids with brain injuries not getting needed rehab  L. Rapaport, Reuters Health News, April 20, 2018

Measures of readiness to transition to adult health care for youth with chronic physical health conditions: A systematic review and recommendations for measurement testing and development  L.A. Schwartz et al., Journal of Pediatric Psychology, July 2014

Motivating adherence among adolescents with cystic fibrosis: Youth and parent perspectives  G.S. Sawicki et al., Pediatric Pulmonoloy, February 2015

Oral health evaluation in special needs individuals  D.M. Pini et al., Einstein, December 2016

Parental health literacy and outcomes of childhood nephrotic syndrome  K. Borges et al., Pediatrics, March 2017

Patient Protection and Affordable Care Act of 2010 and children and youth with special health care needs  H.M. Feldman et al., Journal of Developmental and Behavioral Pediatrics, April 2015

Perceived appetite and clinical outcomes in children with chronic kidney disease  F.W. Ayestaran et al., Pediatric Nephrology, July 2016

A population intervention to improve outcomes in children with medical complexity  G. Noritz et al., Pediatrics, January 2017

Predictors of health literacy and numeracy concordance among adolescents with special health care needs and their parents  D.J. Chisolm et al., Journal of Health Communication, October 2015

Relating health locus of control to health care use, adherence, and transition readiness among youths with chronic conditions, North Carolina, 2015  M. Nazareth et al., Preventing Chronic Disease, July 2016

Resilience in youth and families living with pediatric health and developmental conditions: Introduction to the special issue on resilience  M.E. Hilliard et al., Journal of Pediatric Psychology, October 2015

The role of health advocacy in transitions from pediatric to adult care for children with special health care needs: Bridging families, provider and community services  M.J. Okumura et al., Journal of Pediatric Nursing, October 2015

School staff lacks knowledge about sickle cell disease, student survey finds  I. Mumal, Sickle Cell Anemia News, November 13, 2018

Sickle cell disease with cyanotic congenital heart disease: Long-term outcomes in 5 children  G.J. Iannucci et al., Texas Heart Institute Journal, December 2016

State and national estimates of insurance coverage and health care utilization for adolescents with chronic conditions from the National Survey of Children's Health, 2003  M.J. Okumura et al., Journal of Adolescent Health, October 2007

Study protocol for a randomized controlled trial to assess the feasibility of an open label intervention to improve hydroxyurea adherence in youth with sickle cell disease  A. Smaldone et al., Contemporary Clinical Trials, July 2016

Survivors of childhood diseases struggle to find care as adults  K. Klein, Shots: Health News from NPR, June 21, 2017

Systematic review and meta-analysis of parent and family-based interventions for children and adolescents with chronic medical conditions  E.F. Law et al., Journal of Pediatric Psychology, September 2014

Systematic review of the impact of transition interventions for adolescents with chronic illness on transfer from pediatric to adult healthcare  P.Y. Chu et al., Journal of Pediatric Nursing, October 2015

A systematic review of internet-based self-management interventions for youth with health conditions  J. Stinson et al., Journal of Pediatric Psychology, June 2009

A systematic review of psychosocial therapies for children with rheumatic diseases  E.M. Cohen et al., Pediatric Rheumatology Online Journal, January 2017

T1 mapping in children and young adults with hypertrophic cardiomyopathy  K. Parekh et al., International Journal of Cardiovascular Imaging, January 2017

Taking stock of the CSHCN screener: A review of common questions and current reflections  C.D. Bethell et al., Academic Pediatrics, April 2015

The transition to adult health care for youth with special health care needs: Do racial and ethnic disparities exist?  D.S. Lotstein et al., Pediatrics, December 2010

Transitioning from pediatric to adult dental care for adolescents with special health care needs: Adolescent and parent perspectives--Part One  S. Cruz et al., Pediatric Dentistry, October 2015

Transitioning HIV-positive adolescents to adult care: Lessons learned from twelve adolescent medicine clinics  A.E. Tanner et al., Journal of Pediatric Nursing, October 2016

Validity and reliability of the Physical Activity Questionnaire for Children (PAQ-C) and Adolescents (PAQ-A) in individuals with congenital heart disease  C. Voss et al., PLoS One, April 2017

Viewing services for children and youth with special health care needs through a community lens  J.S. Palfrey et al., Pediatrics, December 2010

Vitamin K supplementation for cystic fibrosis  V.A. Jagannath et al., Cochrane Database of Systematic Reviews, January 2015

You never transition alone! Exploring the experiences of youth with chronic health conditions, parents and healthcare providers on self-management  T. Nguyen et al., Child Care, Health and Development, July 2016