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


CONCLUSIONS
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.
Lori
L
Wiener
Kristin
K
Baird
Caroline
C
Crum
Kimberly
K
Powers
Paul
P
Carpenter
K Scott
KS
Baker
Margaret L
ML
MacMillan
Eneida
E
Nemecek
Jin-Shei
JS
Lai
Sandra A
SA
Mitchell
David A
DA
Jacobsohn
D000293:Adolescent; D000328:Adult; D002648:Child; D002908:Chronic Disease; D003142:Communication; D005260:Female; D006086:Graft vs Host Disease / Q000503:physiopathology / Q000523:psychology*; D018380:Hematopoietic Stem Cell Transplantation / Q000009:adverse effects* / Q000523:psychology*; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D010290:Parents; D010372:Pediatrics / Q000379:methods; D057566:Self Report; D017741:Survivors