Marcelo M Sleiman, Muriel R Statman, Mary Rose Yockel, Yelena P Wu, Jada G Hamilton, Wendy K Kohlmann, Jennie Vagher, Soren Feola, Luke D Maese, Jing Chen, Burton Appel, Casey J Mehrhoff, Beth N Peshkin, Nina S Kadan-Lottick, Gary M Kupfer, Kenneth P Tercyak
{"title":"父母对肿瘤分子谱分析和种系基因检测在孩子癌症治疗中的应用的看法。","authors":"Marcelo M Sleiman, Muriel R Statman, Mary Rose Yockel, Yelena P Wu, Jada G Hamilton, Wendy K Kohlmann, Jennie Vagher, Soren Feola, Luke D Maese, Jing Chen, Burton Appel, Casey J Mehrhoff, Beth N Peshkin, Nina S Kadan-Lottick, Gary M Kupfer, Kenneth P Tercyak","doi":"10.1007/s10689-025-00488-2","DOIUrl":null,"url":null,"abstract":"<p><p>Tumor molecular profiling (TMP) with germline genetic testing (GGT) is becoming standard practice in pediatric cancer care. Yet, little is known about parents' understanding of these practices, or testing's psychosocial risks and benefits. This study characterized parental knowledge, attitudes, and beliefs about TMP and GGT. A cross-sectional, mixed-methods study was conducted among N = 75 parents of children with cancer. Parents completed a survey on cancer-related knowledge, attitudes toward GGT, psychological stress, communication, and decision-making. A subset (N = 31, 41%) then completed interviews about TMP and GGT that were content-coded and interpreted in light of survey findings. Correlative analyses indicated that parents' greater understanding of cancer and genetics was associated with favorable attitudes toward GGT (r = 0.34), preferences for more information about GGT results (r = 0.56) and reduced decisional regret about GGT (r = -0.61). Families who communicated less openly held more favorable views on GGT (r = -0.38) and preferred more information about GGT (r = -0.39), but had children who were more anxious (r = -0.36). Parents who were more anxious (r = 0.40) and who favored GGT (r = 0.41) also had children who were more anxious (all p's < 0.05). Thematically, most parents recalled their children's test results (94%), but recollection of testing type was suboptimal (58% for TMP, 61% for GGT). Nearly 70% believed it would be helpful to speak to other families for psychosocial support; additional potential resources included healthcare providers (31%) and websites (23%). When children with cancer undergo TMP and/or GGT, their parents would benefit psychoeducational resources to improve outcomes.</p>","PeriodicalId":12336,"journal":{"name":"Familial Cancer","volume":"24 3","pages":"63"},"PeriodicalIF":2.0000,"publicationDate":"2025-08-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Parental perspectives on the use of tumor molecular profiling and germline genetic testing during their children's cancer treatment.\",\"authors\":\"Marcelo M Sleiman, Muriel R Statman, Mary Rose Yockel, Yelena P Wu, Jada G Hamilton, Wendy K Kohlmann, Jennie Vagher, Soren Feola, Luke D Maese, Jing Chen, Burton Appel, Casey J Mehrhoff, Beth N Peshkin, Nina S Kadan-Lottick, Gary M Kupfer, Kenneth P Tercyak\",\"doi\":\"10.1007/s10689-025-00488-2\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p>Tumor molecular profiling (TMP) with germline genetic testing (GGT) is becoming standard practice in pediatric cancer care. Yet, little is known about parents' understanding of these practices, or testing's psychosocial risks and benefits. This study characterized parental knowledge, attitudes, and beliefs about TMP and GGT. A cross-sectional, mixed-methods study was conducted among N = 75 parents of children with cancer. Parents completed a survey on cancer-related knowledge, attitudes toward GGT, psychological stress, communication, and decision-making. A subset (N = 31, 41%) then completed interviews about TMP and GGT that were content-coded and interpreted in light of survey findings. Correlative analyses indicated that parents' greater understanding of cancer and genetics was associated with favorable attitudes toward GGT (r = 0.34), preferences for more information about GGT results (r = 0.56) and reduced decisional regret about GGT (r = -0.61). Families who communicated less openly held more favorable views on GGT (r = -0.38) and preferred more information about GGT (r = -0.39), but had children who were more anxious (r = -0.36). Parents who were more anxious (r = 0.40) and who favored GGT (r = 0.41) also had children who were more anxious (all p's < 0.05). Thematically, most parents recalled their children's test results (94%), but recollection of testing type was suboptimal (58% for TMP, 61% for GGT). Nearly 70% believed it would be helpful to speak to other families for psychosocial support; additional potential resources included healthcare providers (31%) and websites (23%). When children with cancer undergo TMP and/or GGT, their parents would benefit psychoeducational resources to improve outcomes.</p>\",\"PeriodicalId\":12336,\"journal\":{\"name\":\"Familial Cancer\",\"volume\":\"24 3\",\"pages\":\"63\"},\"PeriodicalIF\":2.0000,\"publicationDate\":\"2025-08-11\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Familial Cancer\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1007/s10689-025-00488-2\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q3\",\"JCRName\":\"GENETICS & HEREDITY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Familial Cancer","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1007/s10689-025-00488-2","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q3","JCRName":"GENETICS & HEREDITY","Score":null,"Total":0}
Parental perspectives on the use of tumor molecular profiling and germline genetic testing during their children's cancer treatment.
Tumor molecular profiling (TMP) with germline genetic testing (GGT) is becoming standard practice in pediatric cancer care. Yet, little is known about parents' understanding of these practices, or testing's psychosocial risks and benefits. This study characterized parental knowledge, attitudes, and beliefs about TMP and GGT. A cross-sectional, mixed-methods study was conducted among N = 75 parents of children with cancer. Parents completed a survey on cancer-related knowledge, attitudes toward GGT, psychological stress, communication, and decision-making. A subset (N = 31, 41%) then completed interviews about TMP and GGT that were content-coded and interpreted in light of survey findings. Correlative analyses indicated that parents' greater understanding of cancer and genetics was associated with favorable attitudes toward GGT (r = 0.34), preferences for more information about GGT results (r = 0.56) and reduced decisional regret about GGT (r = -0.61). Families who communicated less openly held more favorable views on GGT (r = -0.38) and preferred more information about GGT (r = -0.39), but had children who were more anxious (r = -0.36). Parents who were more anxious (r = 0.40) and who favored GGT (r = 0.41) also had children who were more anxious (all p's < 0.05). Thematically, most parents recalled their children's test results (94%), but recollection of testing type was suboptimal (58% for TMP, 61% for GGT). Nearly 70% believed it would be helpful to speak to other families for psychosocial support; additional potential resources included healthcare providers (31%) and websites (23%). When children with cancer undergo TMP and/or GGT, their parents would benefit psychoeducational resources to improve outcomes.
期刊介绍:
In recent years clinical cancer genetics has become increasingly important. Several events, in particular the developments in DNA-based technology, have contributed to this evolution. Clinical cancer genetics has now matured to a medical discipline which is truly multidisciplinary in which clinical and molecular geneticists work together with clinical and medical oncologists as well as with psycho-social workers.
Due to the multidisciplinary nature of clinical cancer genetics most papers are currently being published in a wide variety of journals on epidemiology, oncology and genetics. Familial Cancer provides a forum bringing these topics together focusing on the interests and needs of the clinician.
The journal mainly concentrates on clinical cancer genetics. Most major areas in the field shall be included, such as epidemiology of familial cancer, molecular analysis and diagnosis, clinical expression, treatment and prevention, counselling and the health economics of familial cancer.