Karolinska Institutet, Department of Women's and Children's Health, Childhood Cancer Research Unit, Stockholm, Sweden.
Psychooncology. 2013 Jan;22(1):160-7. doi: 10.1002/pon.2067. Epub 2011 Sep 22.
This study aims to determine the long-term impact on families of adult survivors of childhood central nervous system tumors. Illness-related family consequences were studied in relation to modifying determinants.
In a population-based cohort of parents of 697 survivors 18 years and older, 551 parents provided data. The impact of cancer on the families was evaluated in four domains using the Impact on Family Scale (economic situation, personal burden, social life, sibling impact). The results were analyzed in relation to survivors' health assessed using the Health Utilities Index™, parent satisfaction with information about illness and treatment, and perceived health-care needs of their child.
Despite an established mild-to-moderate impact on the group level, outcomes provided evidence of substantial cancer-related family consequences even once the child had reached adulthood. About one fifth of parents reported psychological and financial difficulties exceeding the cutoff limit for a significant impact still ≥ 5 years after diagnosis. A stronger total family impact was associated with poorer health of survivors (F[3,302] = 56.65, p < 0.001), and unmet informational - (F[3,231] = 14.06, p < 0.001) and health-care needs (t(218) = 5.31, p < 0.001). The impact was unrelated to survivors' age at follow-up and time since diagnosis.
Adverse cancer-related consequences affect a considerable portion of families of childhood survivors of central nervous system tumor, even after reaching adulthood. The impact is aggravated by lasting sequelae and perceived shortcomings of long-term follow-up, factors that partly are avoidable. Improved clinical follow-up should particularly address illness information and long-term health-care needs to reduce the impact on families of survivors suffering from chronic health conditions.
本研究旨在确定儿童中枢神经系统肿瘤成年幸存者对其家庭的长期影响。研究了与发病相关的家庭后果与修正决定因素的关系。
在一个基于人群的 697 例 18 岁及以上幸存者的父母队列中，551 名父母提供了数据。使用家庭影响量表（经济状况、个人负担、社会生活、兄弟姐妹影响）评估癌症对家庭的影响。结果与幸存者的健康状况相关联，健康状况使用健康效用指数™进行评估，父母对疾病和治疗信息的满意度，以及对孩子的健康护理需求的感知。
尽管在群体水平上存在轻度至中度影响，但研究结果表明，即使孩子已经成年，仍存在大量与癌症相关的家庭后果。约五分之一的父母报告说，心理和经济困难超过了显著影响的截止限制，≥5 年仍存在于诊断后。家庭整体影响较强与幸存者健康状况较差相关（F[3,302] = 56.65，p < 0.001），信息未满足-（F[3,231] = 14.06，p < 0.001）和健康护理需求（t(218) = 5.31，p < 0.001）。影响与幸存者的随访年龄和诊断后时间无关。
不良的与癌症相关的后果会影响相当一部分儿童中枢神经系统肿瘤幸存者的家庭，即使他们已经成年。长期后遗症和长期随访的感知不足会加剧影响，这些因素在一定程度上是可以避免的。改进的临床随访应特别关注疾病信息和长期健康护理需求，以减轻患有慢性健康状况的幸存者家庭的影响。
