Centre for Health Evaluation and Outcome Sciences, Providence Health Care Research Institute, Vancouver, BC, Canada.
Pediatr Blood Cancer. 2014 Jul;61(7):1300-4. doi: 10.1002/pbc.24990. Epub 2014 Feb 24.
Treatment intensity for pediatric medulloblastoma may vary depending on the type of medulloblastoma. In some cases, the dose of radiation may be reduced or eliminated. Correspondingly, there may be trade-offs between quality of life and survival. In this study, focus groups were conducted with parents and clinicians to explore their opinions about these trade-offs as well as the alignment/misalignment between parents and clinicians regarding the trade-offs.
One hour semi-structured focus groups were conducted with parents of children with medulloblastoma and health care providers who were involved in the care of these children.
Parents and providers showed differences in which factors they believe have the greatest impact on quality of life for children with medulloblastoma and their families. For parents, the most important factor is social functioning and their child's ability to make friends and have a social life. In contrast, providers thought that parents cared most about their child's cognitive functioning and ability to attend and perform in school.
Understanding parents' perspectives on quality of life is important in terms of providing support services that target the areas that the parents prioritize. The types of functioning that are most strongly correlated with quality of life from the parents' perspective may be the ones that should be targeted to protect during treatment. Pediatr Blood Cancer 2014;61:1300-1304. © 2014 Wiley Periodicals, Inc.
小儿髓母细胞瘤的治疗强度可能因髓母细胞瘤的类型而异。在某些情况下，辐射剂量可能会降低或消除。相应地，生活质量和存活率之间可能存在权衡。在这项研究中，通过焦点小组与患儿的家长和临床医生进行了讨论，以探讨他们对这些权衡的看法，以及家长和临床医生在权衡问题上的一致和不一致之处。
对患有髓母细胞瘤的儿童的家长和参与这些儿童护理的医疗保健提供者进行了一个小时的半结构化焦点小组讨论。
家长和提供者在哪些因素对髓母细胞瘤患儿及其家庭的生活质量影响最大的问题上存在分歧。对家长来说，最重要的因素是社交功能和他们孩子交朋友和过社交生活的能力。相比之下，提供者认为父母最关心的是孩子的认知功能和上学及在校表现的能力。
了解家长对生活质量的看法对于提供以家长关注的领域为目标的支持服务很重要。从家长的角度来看，与生活质量最密切相关的功能类型可能是在治疗过程中需要保护的功能类型。儿科血液肿瘤学 2014；61:1300-1304。© 2014 威利父子出版公司。
