Literature DB >> 16960733

Developing a health-related quality of life instrument for childhood brain tumor survivors.

Jin-Shei Lai1, David Cella, Tadanori Tomita, Rita K Bode, Monica Newmark, Stewart Goldman.   

Abstract

OBJECTS: With improved treatment, many childhood brain tumor survivors live through adulthood. A psychometrically sound instrument, which can capture their unique experiences through the lifetime, is needed. This paper documents the development of the Pediatric Functional Assessment of Cancer Therapy-Childhood Brain Tumor Survivor (PedsFACT-BrS) for use with survivors for at least 1 year posttreatment.
METHODS: The PedsFACT-BrS was developed in two phases. In phase I, items were generated via interviewing 20 survivors, 20 caregivers, and 12 clinicians/teachers. In phase II, Rasch analysis and classical test theory were used to evaluate the responses of 46 survivors and 46 caregivers.
CONCLUSION: The 34-item PedsFACT-BrS covers four domains: physical well-being, emotional well-being and illness experiences, social well-being, and brain tumor-specific concerns. Its scalability is supported by Rasch analysis and its content validity and reliability is documented. It is now ready to be validated to other subpopulations across the disease trajectory.

Entities:  

Mesh:

Year:  2006        PMID: 16960733     DOI: 10.1007/s00381-006-0176-6

Source DB:  PubMed          Journal:  Childs Nerv Syst        ISSN: 0256-7040            Impact factor:   1.475


  20 in total

1.  Comparison of screening instruments for disability and emotional/behavioral disorders with a generic measure of health-related quality of life in survivors of childhood brain tumors.

Authors:  C R Kennedy; K Leyland
Journal:  Int J Cancer Suppl       Date:  1999

2.  Developing a research program on fatigue in children and adolescents diagnosed with cancer.

Authors:  P S Hinds; M Hockenberry-Eaton
Journal:  J Pediatr Oncol Nurs       Date:  2001 Mar-Apr       Impact factor: 1.636

3.  Social competence and behavioral adjustment of children who are long-term survivors of cancer.

Authors:  R K Mulhern; A L Wasserman; A G Friedman; D Fairclough
Journal:  Pediatrics       Date:  1989-01       Impact factor: 7.124

Review 4.  Attentional processes and their remediation in children treated for cancer: a literature review and the development of a therapeutic approach.

Authors:  Robert W Butler; Donna R Copeland
Journal:  J Int Neuropsychol Soc       Date:  2002-01       Impact factor: 2.892

5.  Symptoms of posttraumatic stress in young adult survivors of childhood cancer.

Authors:  W L Hobbie; M Stuber; K Meeske; K Wissler; M T Rourke; K Ruccione; A Hinkle; A E Kazak
Journal:  J Clin Oncol       Date:  2000-12-15       Impact factor: 44.544

Review 6.  Long-term sequelae of cancer treatment on the central nervous system in childhood.

Authors:  R J Packer; A T Meadows; L B Rorke; J L Goldwein; G D'Angio
Journal:  Med Pediatr Oncol       Date:  1987

7.  Item banking to improve, shorten and computerize self-reported fatigue: an illustration of steps to create a core item bank from the FACIT-Fatigue Scale.

Authors:  Jin-shei Lai; David Cella; Chih-Hung Chang; Rita K Bode; Allen W Heinemann
Journal:  Qual Life Res       Date:  2003-08       Impact factor: 4.147

8.  A controlled study of peer relationships of children surviving brain tumors: teacher, peer, and self ratings.

Authors:  K Vannatta; M A Gartstein; A Short; R B Noll
Journal:  J Pediatr Psychol       Date:  1998-10

9.  Visible physical impairment and psychological adjustment among pediatric cancer survivors.

Authors:  J E O'Malley; D Foster; G Koocher; L Slavin
Journal:  Am J Psychiatry       Date:  1980-01       Impact factor: 18.112

10.  Evaluation of quality of life of childhood cancer survivors: a methodological conundrum.

Authors:  S K Parsons; A P Brown
Journal:  Med Pediatr Oncol       Date:  1998
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  14 in total

1.  Evaluating Psychometric Properties of the Spanish-version of the Pediatric Functional Assessment of Chronic Illness Therapy-Perceived Cognitive Function (pedsFACIT-PCF).

Authors:  Alex W K Wong; Jin-Shei Lai; Helena Correia; David Cella
Journal:  Qual Life Res       Date:  2015-03-07       Impact factor: 4.147

2.  Validation of pediatric Functional Assessment of Cancer Therapy: patient version 2 of "brain tumor survivor" for grade school patients aged 7-12 years.

Authors:  Heejung Yoo; Young-Shin Ra; Hyeon-Jin Park; Jin-Shei Lai; David Cella; Hee-Young Shin; Dong-Seok Kim; Woo-Chul Kim; Yong-Soon Shin
Journal:  Qual Life Res       Date:  2010-12-03       Impact factor: 4.147

3.  Sleep complaints in survivors of pediatric brain tumors.

Authors:  Chasity Brimeyer; Leah Adams; Liang Zhu; Deo Kumar Srivastava; Merrill Wise; Melissa M Hudson; Valerie McLaughlin Crabtree
Journal:  Support Care Cancer       Date:  2015-04-21       Impact factor: 3.603

Review 4.  Considering quality of life for children with cancer: a systematic review of patient-reported outcome measures and the development of a conceptual model.

Authors:  Samantha J Anthony; Enid Selkirk; Lillian Sung; Robert J Klaassen; David Dix; Katrin Scheinemann; Anne F Klassen
Journal:  Qual Life Res       Date:  2013-08-02       Impact factor: 4.147

5.  Validation of Pediatric Functional Assessment of Cancer Therapy Questionnaire (Version 2.0) in Brain Tumor Survivor Aged 13 Years and Older (Parent Form)(PedsFACT-BrS Parent of Adolescent).

Authors:  Hee-Jung Yoo; Dong-Seok Kim; Jin-Shei Lai; David Cella; Hee-Young Shin; Young-Shin Ra
Journal:  J Korean Neurosurg Soc       Date:  2011-03-31

6.  Quality-of-life measures in children with neurological conditions: pediatric Neuro-QOL.

Authors:  Jin-Shei Lai; Cindy Nowinski; David Victorson; Rita Bode; Tracy Podrabsky; Natalie McKinney; Don Straube; Gregory L Holmes; Craig M McDonald; Erik Henricson; R Ted Abresch; Claudia S Moy; David Cella
Journal:  Neurorehabil Neural Repair       Date:  2011-07-25       Impact factor: 3.919

Review 7.  Quality of life questionnaires for children with cancer and childhood cancer survivors: a review of the development of available measures.

Authors:  Anne F Klassen; Sonya J Strohm; Heleen Maurice-Stam; Martha A Grootenhuis
Journal:  Support Care Cancer       Date:  2009-10-16       Impact factor: 3.603

8.  Development of the Japanese version of the Pediatric Quality of Life Inventory Brain Tumor Module.

Authors:  Iori Sato; Akiko Higuchi; Takaaki Yanagisawa; Akitake Mukasa; Kohmei Ida; Yutaka Sawamura; Kazuhiko Sugiyama; Nobuhito Saito; Toshihiro Kumabe; Mizuhiko Terasaki; Ryo Nishikawa; Yasushi Ishida; Kiyoko Kamibeppu
Journal:  Health Qual Life Outcomes       Date:  2010-04-14       Impact factor: 3.186

9.  Vision specific quality of life in children with optic pathway gliomas.

Authors:  Robert A Avery; Kristina K Hardy
Journal:  J Neurooncol       Date:  2013-11-07       Impact factor: 4.130

Review 10.  Clinical trials in pediatric neuro-oncology: what is missing and how we can improve.

Authors:  Lennox Byer; Cassie Kline; Sabine Mueller
Journal:  CNS Oncol       Date:  2016-09-12
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