Support Care Cancer. 2014 Feb;22(2):295-305. doi: 10.1007/s00520-013-1957-6.
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.
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.
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.
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.
慢性移植物抗宿主病（cGVHD）是异基因造血细胞移植后死亡和发病的重要原因，并与广泛的痛苦症状有关。需要一种儿科 cGVHD 相关症状的衡量标准来推进临床研究。我们的目的是直接从儿童那里获取 cGVHD 症状体验的描述，并比较儿童用于描述其症状的特定语言，以及跨发育范围对症状概念的理解。
我们使用定性方法来识别患有 cGVHD 的儿童（年龄为 5-8 岁[ n =8]，9-12 岁[ n =8]和 13-17 岁[ n =8]）在描述其症状时使用的短语、术语和结构。通过对每位参与者及其父母（5-7 岁的儿童与父母一起接受访谈）进行单独访谈来确定每位参与者的症状体验。具有评估 cGVHD 经验的医疗保健专业人员对每位参与者进行临床评估。
儿科移植幸存者及其父母确定了一系列令人烦恼的 cGVHD 症状，并且出现了描述这些症状的常见概念和术语。患者和父母的报告之间的总体一致性为中等（70-75%）。未观察到儿童报告低于或高于父母报告的一致模式。
这些研究结果确定了概念和词汇，为使用于临床研究的新的儿科 cGVHD 症状自我报告衡量标准的项目生成提供信息。研究结果还证实了儿科 cGVHD 患者的症状困扰的普遍性和性质，并支持在常规临床实践中实施系统的症状评估和干预方法。
