Tomlinson Deborah, Schechter Tal, Mairs Mark, Loves Robyn, Herman Daniel, Hopkins Emily, Dupuis L Lee, Sung Lillian
Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, Ontario, Canada
Division of Haematology/Oncology, The Hospital for Sick Children, Toronto, Ontario, Canada.
BMJ Support Palliat Care. 2023 Dec 7;13(e2):e469-e475. doi: 10.1136/bmjspcare-2021-003169.
Symptom Screening in Pediatrics Tool (SSPedi) is a validated self-report symptom screening tool for patients with cancer 8-18 years of age. Co-SSPedi is a novel dyad approach in which both child and parent complete SSPedi together. The objective was to finalise the approach to co-SSPedi administration with instruction that is easy to understand, resulting in dyads completing co-SSPedi correctly.
We enrolled child and parent dyads, who understood English and where children (4-18 years) had cancer or were hematopoietic stem cell transplantation recipients. We provided each dyad with instruction on how to complete co-SSPedi together. Mixed methods were used to determine how easy or hard the instruction was to understand. Two raters adjudicated if co-SSPedi was completed correctly. Dyads were enrolled in cohorts of 12 evenly divided by age (4-7, 8-10, 11-14 and 15-18 years).
We enrolled 5 cohorts of 12 dyads, resulting in 60 dyads. Following verbal instruction provided in the first cohort, we identified the need for written instruction emphasising children should wait for parent response prior to entering scores. The instruction was iteratively refined based on qualitative feedback until the fifth cohort, where all 12 dyads found the instruction easy to understand and completed co-SSPedi correctly.
We developed a standard approach to dyad symptom screening named co-SSPedi with instruction that is easy to understand, resulting in correct co-SSPedi completion. Future efforts should focus on co-SSPedi validation and understanding how co-SSPedi scores compare to self- or proxy-reported symptom reporting.
儿科症状筛查工具（SSPedi）是一种经过验证的针对8至18岁癌症患者的自我报告症状筛查工具。共同SSPedi是一种新颖的二元方法，即儿童和家长一起完成SSPedi。目的是确定共同SSPedi管理方法，并给出易于理解的说明，使二元组能够正确完成共同SSPedi。
我们招募了能理解英语的儿童和家长二元组，其中儿童（4至18岁）患有癌症或为造血干细胞移植受者。我们向每个二元组提供了如何一起完成共同SSPedi的说明。采用混合方法来确定该说明的易理解程度。两名评估者判定共同SSPedi是否正确完成。二元组按年龄平均分为12人一组（4至7岁、8至10岁、11至14岁和15至18岁）。
我们招募了5组，每组12个二元组，共60个二元组。在第一组提供口头说明后，我们发现需要书面说明，强调儿童在输入分数之前应等待家长回应。根据定性反馈对说明进行反复完善，直到第五组，所有12个二元组都认为说明易于理解并正确完成了共同SSPedi。
我们开发了一种名为共同SSPedi的二元症状筛查标准方法，并给出易于理解的说明，从而使共同SSPedi得以正确完成。未来的工作应集中在共同SSPedi的验证以及了解共同SSPedi分数与自我报告或代理报告的症状报告相比情况如何。
