Susan E Thrane1, Scott H Maurer2, Susan M Cohen3, Carol May4, Susan M Sereika3. 1. 1 College of Nursing, The Ohio State University , Columbus, Ohio. 2. 2 Department of Hematology/Oncology, Palliative Care, Children's Hospital of Pittsburgh of UPMC, University of Pittsburgh School of Medicine , Pittsburgh, Pennsylvania. 3. 3 School of Nursing, University of Pittsburgh , Pittsburgh, Pennsylvania. 4. 4 Supportive Care Services, Children's Hospital of Pittsburgh of UPMC , Pittsburgh, Pennsylvania.
Abstract
BACKGROUND: More children are living with serious illness. However, survival and complexity of illnesses have not been described. OBJECTIVE: To describe types of illnesses, timing of referral, and time to death following referral to palliative care; to examine the associations between demographics and clinical characteristics and patient survival; and to examine whether average daily pain decreases after referral. DESIGN: Retrospective chart review of all children ages 2-16 years referred to palliative care at one large children's hospital during the five-year study period from January 1, 2009, through December 31, 2013. MEASUREMENTS: The primary outcome was patient survival and the main independent predictor was type of illness. Kaplan-Meier estimation was used to estimate patient survival time following referral, Cox proportional hazards regression was used to build predictive models based on gender, age, race, religion, and types of illnesses, and paired t-test compared the assessment of pain before and after referral. RESULTS: The cohort consisted of 256 children. Survival experience did not differ significantly based on gender, age, race, or religion (p ≥ 0.05); however, survival did vary based on referring diagnosis (χ2 = 40.3, df = 4, p < 0.001), particularly cancer. Forty-eight children with three days of pain assessments pre- and postreferral had significantly decreased pain postreferral (t(47) = 1.816, p < 0.05 one tailed), supporting our hypothesis. DISCUSSION: Results provide important information on the complexity of disease processes for children referred to palliative care, types of illnesses referred, survival, and pain levels. Results reflect earlier referral to palliative care for most children and highlight the medical complexity especially for children with congenital and genetic diagnoses.
BACKGROUND: More children are living with serious illness. However, survival and complexity of illnesses have not been described. OBJECTIVE: To describe types of illnesses, timing of referral, and time to death following referral to palliative care; to examine the associations between demographics and clinical characteristics and patient survival; and to examine whether average daily pain decreases after referral. DESIGN: Retrospective chart review of all children ages 2-16 years referred to palliative care at one large children's hospital during the five-year study period from January 1, 2009, through December 31, 2013. MEASUREMENTS: The primary outcome was patient survival and the main independent predictor was type of illness. Kaplan-Meier estimation was used to estimate patient survival time following referral, Cox proportional hazards regression was used to build predictive models based on gender, age, race, religion, and types of illnesses, and paired t-test compared the assessment of pain before and after referral. RESULTS: The cohort consisted of 256 children. Survival experience did not differ significantly based on gender, age, race, or religion (p ≥ 0.05); however, survival did vary based on referring diagnosis (χ2 = 40.3, df = 4, p < 0.001), particularly cancer. Forty-eight children with three days of pain assessments pre- and postreferral had significantly decreased pain postreferral (t(47) = 1.816, p < 0.05 one tailed), supporting our hypothesis. DISCUSSION: Results provide important information on the complexity of disease processes for children referred to palliative care, types of illnesses referred, survival, and pain levels. Results reflect earlier referral to palliative care for most children and highlight the medical complexity especially for children with congenital and genetic diagnoses.
Entities:
Keywords:
child; life limiting; life threatening; palliative care; patient survival; pediatric
Authors: Donna L Johnston; Kim Nagel; Debra L Friedman; Jane L Meza; Craig A Hurwitz; Sarah Friebert Journal: J Clin Oncol Date: 2008-10-01 Impact factor: 44.544
Authors: Linda Jm Oostendorp; Dilini Rajapakse; Paula Kelly; Joanna Crocker; Andrew Dinsdale; Lorna Fraser; Myra Bluebond-Langner Journal: J Child Health Care Date: 2018-11-21 Impact factor: 1.979
Authors: Veerle Piette; Kim Beernaert; Joachim Cohen; Nele S Pauwels; Anne-Lore Scherrens; Jutte van der Werff Ten Bosch; Luc Deliens Journal: Pediatr Res Date: 2020-07-09 Impact factor: 3.756
Authors: Sven Kernebeck; Chantal Jux; Theresa Sophie Busse; Dorothee Meyer; Larissa Alice Dreier; Daniel Zenz; Boris Zernikow; Jan Peter Ehlers Journal: Children (Basel) Date: 2022-01-06
Authors: Sven Kernebeck; Theresa Sophie Busse; Chantal Jux; Larissa Alice Dreier; Dorothee Meyer; Daniel Zenz; Boris Zernikow; Jan Peter Ehlers Journal: Int J Environ Res Public Health Date: 2022-03-18 Impact factor: 3.390