Patients' and parents' views regarding supportive care in childhood cancer.
Patients' and parents' views regarding supportive care in childhood cancer.
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患者和父母对儿童癌症的支持性护理的看法。
DOI：
10.1007/s00520-017-3723-7
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发表时间：
2017-10
期刊：
影响因子：
--
通讯作者：
Tissing WJE
中科院分区：
文献类型：
--
作者：
Tenniglo LJA;Loeffen EAH;Kremer LCM;Font-Gonzalez A;Mulder RL;Postma A;Naafs-Wilstra MC;Grootenhuis MA;van de Wetering MD;Tissing WJE
儿童恶性肿瘤的强化治疗增加了生存率，但也增加了治疗相关疾病的发生率。因此，支持性护理发挥着越来越重要的作用。在规划制定纳入共同决策的指导方针时，我们注意到对患者及其父母的需求和偏好知之甚少。因此，我们的目标是调查(1)患者和家长认为最重要的支持性护理主题和(2)他们希望在决策中发挥的首选作用。这项定性研究包括三个焦点小组（两个传统的，一个在线的），包括两个荷兰儿科肿瘤中心的患者和家长。数据按简单逐字转录，并采用专题分析进行分析。11位青少年患者和18位家长就支持性护理的各个方面分享了详细的看法。重要的主题是患者和医生之间的沟通（承诺，可及性，医生的积极态度），及时提供信息，以及心理社会护理的适用性和可及性。与医疗专业人员优先考虑的支持性护理主题相反，躯体问题（例如发热性中性粒细胞减少症）很少得到解决。患者和家长更愿意积极参与选定主题的决策，如选择镇痛药和止吐药，而不是选择抗生素。癌症儿童和父母对支持性护理和共同决策的看法提供了宝贵的见解。这些结果对于改善支持性护理具有重要意义，无论是在指南制定的主题选择方面，还是在纳入患者和家长的偏好方面。本文的在线版本（doi:10.1007/s00520-017-3723-7）包含补充资料，仅供授权用户使用。
Intensive therapies in pediatric malignancies increased survival rates but also occurrence of treatment-related morbidities. Therefore, supportive care fulfills an increasingly important role. In planning development of guidelines with incorporation of shared decision making, we noticed that little is known about the needs and preferences of patients and their parents. Our goals were therefore to investigate (1) which supportive care topics patients and parents regard as most important and (2) the preferred role they wish to fulfill in decision making. This qualitative study consisted of three focus groups (two traditional, one online) with patients and parents of two Dutch pediatric oncology centers. Data were transcribed as simple verbatim and analyzed using thematic analysis. Eleven adolescent patients and 18 parents shared detailed views on various aspects of supportive care. Themes of major importance were communication between patient and physician (commitment, accessibility, proactive attitude of physicians), well-timed provision of information, and the suitability and accessibility of psychosocial care. In contrast to prioritized supportive care topics by medical professionals, somatic issues (e.g., febrile neutropenia) were infrequently addressed. Patients and parents preferred to be actively involved in decision making in selected topics, such as choice of analgesics and anti-emetics, but not in, e.g., choice of antibiotics. Children with cancer and parents were provided a valuable insight into their views regarding supportive care and shared decision making. These results have important implications towards improving supportive care, both in selecting topics for guideline development and incorporating preferences of patients and parents herein. The online version of this article (doi:10.1007/s00520-017-3723-7) contains supplementary material, which is available to authorized users.
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影响因子：
2.9
作者：
KITZINGER, J
通讯作者：
KITZINGER, J
影响因子：
2.8
作者：
Kilicarslan-Toruner, Ebru;Akgun-Citak, Ebru
通讯作者：
Akgun-Citak, Ebru
影响因子：
51.1
作者：
Gatta, Gemma;Botta, Laura;Peris-Bonet, Rafael
通讯作者：
Peris-Bonet, Rafael
DOI：
10.1016/0030-4220(86)90258-6
发表时间：
1986-12-01
期刊：
ORAL SURGERY ORAL MEDICINE ORAL PATHOLOGY ORAL RADIOLOGY AND ENDODONTOLOGY
影响因子：
--
作者：
DREIZEN, S;MCCREDIE, KB;KEATING, MJ
通讯作者：
KEATING, MJ
DOI：
10.1007/s11764-008-0043-4
发表时间：
2008-03-01
期刊：
Journal of cancer survivorship : research and practice
影响因子：
--
作者：
Jefford, Michael;Karahalios, Emily;Schofield, Penelope
通讯作者：
Schofield, Penelope