Literature DB >> 27145249

Advancing a comprehensive cancer care agenda for children and their families: Institute of Medicine Workshop highlights and next steps.

Rebecca Kirch1,2, Gregory Reaman3, Chris Feudtner4,5, Lori Wiener6, Lisa A Schwartz7,8, Lillian Sung9, Joanne Wolfe10,11.   

Abstract

This article highlights key findings from the "Comprehensive Cancer Care for Children and Their Families" March 2015 joint workshop by the Institute of Medicine (IOM) and the American Cancer Society. This initiative convened more than 100 family members, clinician investigators, advocates, and members of the public to discuss emerging evidence and care models and to determine the next steps for optimizing quality-of-life outcomes and well-being for children and families during pediatric cancer treatment, after treatment completion, and across the life spectrum. Participants affirmed the triple aim of pediatric oncology that strives for every child with cancer to be cured; provides high-quality palliative and psychosocial supportive, restorative, and rehabilitative care to children and families throughout the illness course and survivorship; and assures receipt of high-quality end-of-life care for patients with advancing disease. Workshop outcomes emphasized the need for new pediatric cancer drug development and identified critical opportunities to prioritize palliative care and psychosocial support as an integral part of pediatric cancer research and treatment, including the necessity for adequately resourcing these supportive services to minimize suffering and distress, effectively address quality-of-life needs for children and families at all stages of illness, and mitigate the long-term health risks associated with childhood cancer and its treatment. Next steps include dismantling existing silos and enhancing collaboration between clinical investigators, disease-directed specialists, and supportive care services; expanding the use of patient-reported and parent-reported outcomes; effectively integrating palliative and psychosocial care; and clinical communication skills development. CA Cancer J Clin 2016;66:398-407.
© 2016 American Cancer Society. © 2016 American Cancer Society.

Entities:  

Keywords:  end of life; oncology; palliative care; patient-reported outcomes; pediatric; psychosocial care; quality of life; supportive care; survivorship

Mesh:

Year:  2016        PMID: 27145249     DOI: 10.3322/caac.21347

Source DB:  PubMed          Journal:  CA Cancer J Clin        ISSN: 0007-9235            Impact factor:   508.702


  15 in total

Review 1.  Pediatric Palliative Care in Oncology.

Authors:  Jennifer Snaman; Sarah McCarthy; Lori Wiener; Joanne Wolfe
Journal:  J Clin Oncol       Date:  2020-02-05       Impact factor: 44.544

2.  Challenges to Family Management for Caregivers of Adolescent and Young Adult Survivors of Childhood Brain Tumors [Formula: see text].

Authors:  Nicole SanGiacomo; Jennifer Toth; Wendy Hobbie; Elizabeth Broden; Elizabeth Ver Hoeve; Kathleen A Knafl; Lamia Barakat; Sue Ogle; Janet A Deatrick
Journal:  J Pediatr Oncol Nurs       Date:  2019-05-03       Impact factor: 1.636

3.  Parent Perceptions of Team-Delivered Care for Children With Advanced Cancer: A Report From the PediQUEST Study.

Authors:  Angela M Feraco; Prasanna Ananth; Veronica Dussel; Hasan Al-Sayegh; Clement Ma; Abby R Rosenberg; Chris Feudtner; Joanne Wolfe
Journal:  J Pain Symptom Manage       Date:  2020-05-22       Impact factor: 3.612

4.  Voicing their choices: Advance care planning with adolescents and young adults with cancer and other serious conditions.

Authors:  Lori Wiener; Sima Bedoya; Haven Battles; Leonard Sender; Keri Zabokrtsky; Kristine A Donovan; Lora M A Thompson; Barbara B Lubrano di Ciccone; Margarita Bobonis Babilonia; Karen Fasciano; Paige Malinowski; Maureen Lyon; Jessica Thompkins; Corey Heath; Denise Velazquez; Karen Long-Traynor; Abigail Fry; Maryland Pao
Journal:  Palliat Support Care       Date:  2022-08

5.  Quality of Life Among Parents of Adolescent and Young Adult Brain Tumor Survivors.

Authors:  David K Buchbinder; Michelle A Fortier; Kathryn Osann; Justin Wilford; Violet Shen; Lilibeth Torno; Leonard S Sender; Susan K Parsons; Lari Wenzel
Journal:  J Pediatr Hematol Oncol       Date:  2017-11       Impact factor: 1.289

6.  Symptom Monitoring in Pediatric Oncology Using Patient-Reported Outcomes: Why, How, and Where Next.

Authors:  Allison Barz Leahy; Chris Feudtner; Ethan Basch
Journal:  Patient       Date:  2018-04       Impact factor: 3.883

Review 7.  Beyond the storm - subacute toxicities and late effects in children receiving CAR T cells.

Authors:  Haneen Shalabi; Juliane Gust; Agne Taraseviciute; Pamela L Wolters; Allison B Leahy; Carlos Sandi; Theodore W Laetsch; Lori Wiener; Rebecca A Gardner; Veronique Nussenblatt; Joshua A Hill; Kevin J Curran; Timothy S Olson; Colleen Annesley; Hao-Wei Wang; Javed Khan; Marcelo C Pasquini; Christine N Duncan; Stephan A Grupp; Michael A Pulsipher; Nirali N Shah
Journal:  Nat Rev Clin Oncol       Date:  2021-01-25       Impact factor: 66.675

Review 8.  Palliative Care in Pediatric Oncology and Hematopoietic Stem Cell Transplantation.

Authors:  Allison Uber; Jonathan S Ebelhar; Ashley Foster Lanzel; Anna Roche; Viviana Vidal-Anaya; Katharine E Brock
Journal:  Curr Oncol Rep       Date:  2022-01-21       Impact factor: 5.075

9.  Electronic symptom monitoring in pediatric patients hospitalized for chemotherapy.

Authors:  Allison Barz Leahy; Lisa A Schwartz; Yimei Li; Bryce B Reeve; Justin E Bekelman; Richard Aplenc; Ethan M Basch
Journal:  Cancer       Date:  2021-05-04       Impact factor: 6.921

10.  Patient-Reported Outcomes in Pediatric Oncology: The Patient Voice as a Gold Standard.

Authors:  Allison Barz Leahy; Angela Steineck
Journal:  JAMA Pediatr       Date:  2020-11-02       Impact factor: 16.193

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