Face-Validated Quality Indicators for Appropriateness Of End-Of-Life Care in Children With Serious Illness: A Study Using the RAND/UCLA Appropriateness Method.

[1]  L. Serra,et al.  Children with medical complexity and paediatric palliative care: a retrospective cross-sectional survey of prevalence and needs , 2021, Italian Journal of Pediatrics.

[2]  S. Asch,et al.  Quality measures for end‐of‐life care for children with cancer: A modified Delphi approach , 2021, Cancer.

[3]  J. Marston,et al.  Quality Indicators in Pediatric Palliative Care: Considerations for Latin America , 2021, Children.

[4]  N. André,et al.  First step toward high‐intensity end‐of‐life care definition in pediatric oncology: Response to bereaved parents' views on end‐of‐life care for children with cancer: Quality marker implications , 2020, Cancer.

[5]  L. Deliens,et al.  Healthcare interventions improving and reducing quality of life in children at the end of life: a systematic review , 2020, Pediatric Research.

[6]  S. Bhatia,et al.  Bereaved parents' views on end‐of‐life care for children with cancer: Quality marker implications , 2020, Cancer.

[7]  G. Randhawa,et al.  Children’s unmet palliative care needs: a scoping review of parents’ perspectives , 2019, BMJ Supportive & Palliative Care.

[8]  K. Widger,et al.  Indicators Used to Assess the Impact of Specialized Pediatric Palliative Care: A Scoping Review. , 2019, Journal of palliative medicine.

[9]  P. Carter,et al.  The Major Causes of Death in Children and Adolescents in the United States. , 2018, The New England journal of medicine.

[10]  C. Stuessi,et al.  Patterns of paediatric end-of-life care: a chart review across different care settings in Switzerland , 2018, BMC Pediatrics.

[11]  J. Wolfe,et al.  Patterns of Care at the End of Life for Children and Young Adults with Life‐Threatening Complex Chronic Conditions , 2017, The Journal of pediatrics.

[12]  S. Kamper,et al.  Developing a Guideline for Reporting Mediation Analyses (AGReMA) in Randomized Trials and Observational Studies , 2017 .

[13]  A. Rosenberg,et al.  Pediatric-Specific End-of-Life Care Quality Measures: An Unmet Need of a Vulnerable Population. , 2017, Journal of oncology practice.

[14]  F. Benini,et al.  Impact of the Regional Pediatric Palliative Care Network on the Care of Children on Long-Term Ventilation: Could the Availability of a Residential Solution into the Network Reduce the Duration of Intensive Care Unit Staying for These Patients? , 2017, Journal of Pediatric Intensive Care.

[15]  L. Deliens,et al.  Developing indicators of appropriate and inappropriate end-of-life care in people with Alzheimer’s disease, cancer or chronic obstructive pulmonary disease for population-level administrative databases: A RAND/UCLA appropriateness study , 2017, Palliative medicine.

[16]  L. Deliens,et al.  Place of death of children with complex chronic conditions: cross-national study of 11 countries , 2017, European Journal of Pediatrics.

[17]  Chris Feudtner,et al.  Research Priorities in Pediatric Palliative Care. , 2015, The Journal of pediatrics.

[18]  J. Wolfe,et al.  OPINION Supportive and palliative care of children with metabolic and neurological diseases , 2014 .

[19]  Chris Feudtner,et al.  Pediatric complex chronic conditions classification system version 2: updated for ICD-10 and complex medical technology dependence and transplantation , 2014, BMC Pediatrics.

[20]  K. Shaw,et al.  Prognostic indicators for children and young people at the end of life: A Delphi study , 2014, Palliative medicine.

[21]  L. Deliens,et al.  Quality indicators for palliative care: update of a systematic review. , 2013, Journal of pain and symptom management.

[22]  L. Fraser,et al.  A cohort study of children and young people with progressive neuromuscular disorders: Clinical and demographic profiles and changing patterns of referral for palliative care , 2012, Palliative medicine.

[23]  J. Winters,et al.  Integrative review: parent perspectives on care of their child at the end of life. , 2012, Journal of pediatric nursing.

[24]  Jennifer M. Zumsteg,et al.  Quality of care indicators for the structure and organization of inpatient rehabilitation care of children with traumatic brain injury. , 2012, Archives of physical medicine and rehabilitation.

[25]  C. Feudtner,et al.  Pediatric Palliative Care Patients: A Prospective Multicenter Cohort Study , 2011, Pediatrics.

[26]  E. Bergstraesser,et al.  Palliative care for children and adolescents in Switzerland: a needs analysis across three diagnostic groups , 2011, European Journal of Pediatrics.

[27]  R. Hutcheon,et al.  Genetic disorders and congenital malformations in pediatric long-term care. , 2007, Journal of the American Medical Directors Association.

[28]  C. Earle,et al.  Evaluating claims-based indicators of the intensity of end-of-life cancer care. , 2005, International journal for quality in health care : journal of the International Society for Quality in Health Care.

[29]  T. Ferris,et al.  Risk adjustment for pediatric quality indicators. , 2004, Pediatrics.

[30]  D. Dougherty,et al.  Quality measures for children's health care. , 2004, Pediatrics.

[31]  A. Hutchinson,et al.  Research methods used in developing and applying quality indicators in primary care , 2002, BMJ : British Medical Journal.

[32]  A. Knebel,et al.  End-of-life issues in genetic disorders: Literature and research directions , 2002, Genetics in Medicine.

[33]  K. Kahn,et al.  Physician ratings of appropriate indications for six medical and surgical procedures. , 1986, American journal of public health.

[34]  R H Brook,et al.  Variations in the use of medical and surgical services by the Medicare population. , 1986, The New England journal of medicine.

[35]  M. Bunge.  What is a quality of life indicator? , 1975 .

[36]  José Antonio Porras Cantarero,et al.  Acompañamiento y seguimiento de los niños con enfermedades neurológicas graves. Atención por parte de un equipo de cuidados paliativos pediátricos especializado , 2018 .

[37]  K. Widger,et al.  Parents' perceptions of the quality of pediatric and perinatal end-of-life care. , 2008, Pediatric nursing.

[38]  B. Burnand,et al.  The RAND/UCLA Appropriateness Method User's Manual , 2001 .