Child and parent perspectives of the chronic graft-versus-host disease (cGVHD) symptom experience: A concept elicitation study

Lori Wiener, Kristin Baird, Caroline Crum, Kimberly Powers, Paul Carpenter, K. Scott Baker, Margaret L. MacMillan, Eneida Nemecek, Jin Shei Lai, Sandra A. Mitchell, David A. Jacobsohn

Research output: Contribution to journalArticle

7 Citations (Scopus)

Abstract

Purpose: Chronic graft-versus-host disease (cGVHD) is a significant cause of mortality and morbidity after allogeneic hematopoietic cell transplant and is associated with a wide range of distressing symptoms. A pediatric measure of cGVHD-related symptoms is needed to advance clinical research. Our aim was to elicit descriptions of the cGVHD symptom experience directly from children and to compare the specific language used by children to describe their symptoms and the comprehension of symptom concepts across the developmental spectrum. Methods: We used qualitative methods to identify the phrases, terms, and constructs that children (ages 5-8 [n=8], 9-12 [n=8], and 13-17 [n=8]) with cGVHD employ when describing their symptoms. The symptom experience of each participant was determined through individual interviews with each participant and parent (5-7 year olds were interviewed together with a parent). Medical practitioners with experience in evaluating cGVHD performed clinical assessments of each participant. Results: Pediatric transplant survivors and their parents identified a wide range of bothersome cGVHD symptoms, and common concepts and terminologies to describe these experiences emerged. Overall concordance between patient and parent reports was moderate (70-75%). No consistent pattern of child under- or over-reporting in comparison to the parent report was observed. Conclusion: These study results identify concepts and vocabulary to inform item generation for a new pediatric self-report measure of cGVHD symptoms for use in clinical research. The findings also confirm the prevalence and nature of symptom distress in pediatric patients with cGVHD and support implementation of systematic approaches to symptom assessment and intervention in routine clinical practice.

Original languageEnglish (US)
Pages (from-to)295-305
Number of pages11
JournalSupportive Care in Cancer
Volume22
Issue number2
DOIs
StatePublished - 2014

Fingerprint

Graft vs Host Disease
Pediatrics
Transplants
Child Language
Symptom Assessment
Vocabulary
Research
Terminology
Self Report
Survivors
Parents
Interviews
Morbidity
Mortality

Keywords

  • Chronic graft-versus-host disease
  • Patient-reported outcomes (PROs)
  • Pediatric
  • Qualitative
  • Stem cell transplant
  • Symptom scale

ASJC Scopus subject areas

  • Oncology

Cite this

Child and parent perspectives of the chronic graft-versus-host disease (cGVHD) symptom experience : A concept elicitation study. / Wiener, Lori; Baird, Kristin; Crum, Caroline; Powers, Kimberly; Carpenter, Paul; Baker, K. Scott; MacMillan, Margaret L.; Nemecek, Eneida; Lai, Jin Shei; Mitchell, Sandra A.; Jacobsohn, David A.

In: Supportive Care in Cancer, Vol. 22, No. 2, 2014, p. 295-305.

Research output: Contribution to journalArticle

Wiener, L, Baird, K, Crum, C, Powers, K, Carpenter, P, Baker, KS, MacMillan, ML, Nemecek, E, Lai, JS, Mitchell, SA & Jacobsohn, DA 2014, 'Child and parent perspectives of the chronic graft-versus-host disease (cGVHD) symptom experience: A concept elicitation study', Supportive Care in Cancer, vol. 22, no. 2, pp. 295-305. https://doi.org/10.1007/s00520-013-1957-6
Wiener, Lori ; Baird, Kristin ; Crum, Caroline ; Powers, Kimberly ; Carpenter, Paul ; Baker, K. Scott ; MacMillan, Margaret L. ; Nemecek, Eneida ; Lai, Jin Shei ; Mitchell, Sandra A. ; Jacobsohn, David A. / Child and parent perspectives of the chronic graft-versus-host disease (cGVHD) symptom experience : A concept elicitation study. In: Supportive Care in Cancer. 2014 ; Vol. 22, No. 2. pp. 295-305.
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AU - Powers, Kimberly

AU - Carpenter, Paul

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AU - Nemecek, Eneida

AU - Lai, Jin Shei

AU - Mitchell, Sandra A.

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AB - Purpose: Chronic graft-versus-host disease (cGVHD) is a significant cause of mortality and morbidity after allogeneic hematopoietic cell transplant and is associated with a wide range of distressing symptoms. A pediatric measure of cGVHD-related symptoms is needed to advance clinical research. Our aim was to elicit descriptions of the cGVHD symptom experience directly from children and to compare the specific language used by children to describe their symptoms and the comprehension of symptom concepts across the developmental spectrum. Methods: We used qualitative methods to identify the phrases, terms, and constructs that children (ages 5-8 [n=8], 9-12 [n=8], and 13-17 [n=8]) with cGVHD employ when describing their symptoms. The symptom experience of each participant was determined through individual interviews with each participant and parent (5-7 year olds were interviewed together with a parent). Medical practitioners with experience in evaluating cGVHD performed clinical assessments of each participant. Results: Pediatric transplant survivors and their parents identified a wide range of bothersome cGVHD symptoms, and common concepts and terminologies to describe these experiences emerged. Overall concordance between patient and parent reports was moderate (70-75%). No consistent pattern of child under- or over-reporting in comparison to the parent report was observed. Conclusion: These study results identify concepts and vocabulary to inform item generation for a new pediatric self-report measure of cGVHD symptoms for use in clinical research. The findings also confirm the prevalence and nature of symptom distress in pediatric patients with cGVHD and support implementation of systematic approaches to symptom assessment and intervention in routine clinical practice.

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