Purpose: Cancer predisposition syndrome (CPS) surveillance allows for the early detection and treatment of neoplasms; however, the psychosocial impact of tumor surveillance is poorly understood for cancer-affected adolescents with a CPS and their parents. To gain insight, we qualitatively characterized the affective and cognitive experience of undergoing CPS tumor surveillance. Experimental Design: Adolescents with a cancer history and their parents independently completed semi-structured interviews querying their experience with the adolescent’s tumor surveillance. Interviews were coded using emotion coding and content analysis before developing themes using thematic analysis. Results: Eight adolescents and 11 parents (7 mothers, 4 fathers) completed interviews. Parent themes included: maternal anxiety, relief following surveillance, fathers’ positive expectations and emotions surrounding surveillance results, coping strategies, and perception of going through surveillance together with their child. Adolescent themes included: normalization of surveillance, indifference about surveillance but excitement to return to the hospital, focus on physical and logistic aspects, relief focused on being done with scans, and belief that outcomes would be good. Past scans/surveillance experiences influencing surveillance feelings was a theme across both parents and adolescents. Conclusions: Our findings suggest that tumor surveillance is not causing marked emotional distress for cancer-affected adolescents with a CPS. In contrast, mothers of cancer-affected adolescents undergoing surveillance may present with anxiety leading up to tumor surveillance and, for a subset, in between surveillance appointments. These observations highlight a need for ongoing psychosocial screening for families of children with a CPS and a role for psychosocial providers in multidisciplinary management of CPSs.

中文翻译：

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玩俄罗斯轮盘赌：家长和青少年对癌症易感综合症青少年肿瘤监测的看法


目的：癌症易感综合征（CPS）监测可以早期发现和治疗肿瘤；然而，对于患有 CPS 的癌症青少年及其父母来说，肿瘤监测的社会心理影响知之甚少。为了获得洞察力，我们定性地描述了接受 CPS 肿瘤监测的情感和认知体验。实验设计：有癌症病史的青少年及其父母独立完成半结构化访谈，询问他们对青少年肿瘤监测的经验。在使用主题分析开发主题之前，使用情感编码和内容分析对访谈进行编码。结果：8 名青少年和 11 名家长（7 名母亲，4 名父亲）完成了访谈。家长主题包括：母亲的焦虑、监视后的缓解、父亲对监视结果的积极期望和情绪、应对策略以及与孩子一起经历监视的看法。青少年主题包括：监测正常化、对监测漠不关心但对返回医院感到兴奋、关注身体和后勤方面、关注通过扫描进行的缓解以及相信结果会很好。过去的扫描/监视经历影响监视感受是父母和青少年的一个主题。结论：我们的研究结果表明，肿瘤监测不会给患有癌症的 CPS 青少年带来明显的情绪困扰。相比之下，接受监测的受癌症影响的青少年的母亲可能会在肿瘤监测之前表现出焦虑，对于一部分人来说，在监测预约之间可能会表现出焦虑。 这些观察结果强调需要对 CPS 儿童的家庭进行持续的心理社会筛查，以及社会心理服务提供者在 CPS 多学科管理中的作用。