Research Unit Women's and Children's Health, The Juliane Marie Centre for Women, Children and Reproduction, Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark.
Pediatr Blood Cancer. 2013 May;60(5):865-72. doi: 10.1002/pbc.24474. Epub 2013 Jan 17.
To assess the feasibility and psychosocial impact of a hospital-based home care (HBHC) program for children with cancer.
A HBHC program was carried out with 51 children (0-18 years) with cancer to assess its feasibility in terms of satisfaction, care preferences, safety, and cost. A controlled trial was conducted to assess children's health-related quality of life (HRQOL) using the parent-reported and self-reported PedsQL generic core scale and PedsQL cancer module, and the psychosocial impact on the family by PedsQL family impact module comprising a subsample of 28 children and 43 parents in the home care group, and 47 children and 66 parents receiving standard hospital care.
All parents in the HBHC program were satisfied and preferred home care. There were no serious adverse events associated with HBHC, and costs did not increase. When adjusting for age, gender, diagnosis and time since diagnosis, we found significant higher HRQOL scores in parent-reported physical health (P = 0.04; 95% confidence interval (CI): -0.2-19.5) and worry (P = 0.04; 95% CI: -0.4-20.6) in the home-care group indicating better physical health and less worry for children in the home-care group. No significant difference was found in the Family Impact Module.
This study indicates that HBHC is a feasible alternative to hospital care for children with cancer, and is greatly preferred by parents. Specific aspects of children's HRQOL may be improved with HBHC and the psychosocial burden on the family does not increase.
评估基于医院的家庭护理（HBHC）计划对癌症儿童的可行性和心理社会影响。
对 51 名（0-18 岁）癌症儿童进行了 HBHC 计划，以评估其在满意度、护理偏好、安全性和成本方面的可行性。进行了一项对照试验，使用父母报告和自我报告的 PedsQL 通用核心量表和 PedsQL 癌症模块评估儿童的健康相关生活质量（HRQOL），并使用 PedsQL 家庭影响模块评估家庭的心理社会影响，该模块包括家庭护理组的 28 名儿童和 43 名父母以及接受标准医院护理的 47 名儿童和 66 名父母的亚样本。
HBHC 计划中的所有父母都满意并首选家庭护理。HBHC 没有与严重不良事件相关，且成本没有增加。在调整年龄、性别、诊断和诊断后时间后，我们发现家庭护理组在父母报告的身体健康（P=0.04；95%置信区间（CI）：-0.2-19.5）和担忧（P=0.04；95% CI：-0.4-20.6）方面的 HRQOL 评分显著更高，表明家庭护理组的儿童身体健康状况更好，担忧更少。家庭影响模块未发现显著差异。
本研究表明，HBHC 是癌症儿童替代医院护理的可行选择，并且深受父母的欢迎。HBHC 可能会改善儿童特定方面的 HRQOL，并且不会增加家庭的心理社会负担。
