Chemotherapy, Pain, Sleep, Fatigue in Children & Parents

儿童化疗、疼痛、睡眠、疲劳

• 批准号: 7099560
• 负责人: VIVIAN R. GEDALY-DUFF
• 金额: $ 28.85万
• 依托单位: OREGON HEALTH & SCIENCE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2005
• 资助国家: 美国
• 起止时间: 2005-07-22 至 2010-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7099560
• 关键词: actigraphy; acute lymphocytic leukemia; adolescence (12-20); behavioral /social science research tag; caregivers; child (0-11); clinical research; comorbidity; depression; family structure /dynamics; fatigue; human subject; longitudinal human study; neoplasm /cancer chemotherapy; pain; parents; personal log /diary; psychological aspect of cancer; quality of life; questionnaires; sleep disorders; statistics /biometry

Symptom management is a critical issue in both acute and chronic illness care. Studies with adults repeatedly demonstrate the deleterious effects of symptoms on health outcomes such as mood, physical function, family life, social roles and school/work roles. Despite extensive work on understanding the symptoms experience of adults with a variety of health problems, research on the symptom experience of children is scarce, follows a single symptom (e.g., pain), and is often cross-sectional. Children with acute lymphoblastic leukemia (ALL) are treated with a lengthy chemotherapy protocol that includes 6-8 months of intensive treatments, followed by 2 years or more of maintenance therapy. In a recent survey, pain and fatigue were the problems reported most frequently in children with leukemia. Sleep disturbance has been reported in a few studies. No studies, however, have described the pattern of change in these symptoms or examined the relationships among these symptoms with health outcomes in children across the course of chemotherapy. In addition, there are no studies of symptoms of parents who care for their children at home. This longitudinal study will be the first to describe in detail the patterns of pain, sleep, fatigue, and well-being of children with ALL and their parents across the course of chemotherapy using 3-day diaries, actigraphy, questionnaires, and medical record review. Within subjects design will examine change over time of 72 children (ages 8 to 18 years) with ALL and their parents at six clinically relevant points (once at induction, consolidation, interim maintenance, delayed intensification, and twice in maintenance). The congruence of patterns in pain, sleep disturbance, fatigue, and health outcomes between fathers and mothers, fathers and child, and mothers and child will also be explored. Results of this study will contribute to the development of comprehensive intervention protocols to benefit both the children with leukemia and their parents. The high survival rate of children with ALL could be even higher, and health outcomes increased with better understanding and management of these symptoms.

症状管理是急性和慢性疾病护理中的一个关键问题。针对成年人的研究反复证明了症状对情绪、身体机能、家庭生活、社会角色和学校/工作角色等健康结果的有害影响。尽管在了解患有各种健康问题的成年人的症状体验方面进行了大量工作，但对儿童症状体验的研究却很少，只关注单一症状（例如疼痛）， 并且通常是横截面的。 患有急性淋巴细胞白血病 (ALL) 的儿童需要接受漫长的化疗方案，其中包括 6-8 个月的强化治疗，然后是 2 年或更长时间的维持治疗。在最近的一项调查中，疼痛和疲劳是白血病儿童最常报告的问题。一些研究报告了睡眠障碍。然而，还没有研究描述这些症状的变化模式，也没有研究这些症状与儿童在化疗过程中健康结果之间的关系。此外，还没有针对在家照顾孩子的父母的症状进行研究。 这项纵向研究将首次使用 3 天日记、体动记录仪、问卷和病历审查详细描述 ALL 儿童及其父母在化疗过程中的疼痛、睡眠、疲劳和健康模式。在受试者中，设计将检查 72 名 ALL 儿童（8 至 18 岁）及其父母在六个临床相关点（一次在诱导、巩固、临时维持、延迟强化和两次维持）随时间的变化。还将探讨父亲和母亲、父亲和孩子、母亲和孩子之间疼痛、睡眠障碍、疲劳和健康结果模式的一致性。这项研究的结果将有助于制定全面的干预方案，使患有此病的儿童受益 白血病和他们的父母。患有 ALL 的儿童的高存活率可能会更高，并且随着对这些症状的更好理解和管理，健康结果也会增加。