异体造血干细胞移植患者及其护理人员长期随访临床的生活质量和信息需求。

Shohei Nakajima, Kiyoko Kamibeppu
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引用次数: 0

摘要

目的:研究同种异体造血干细胞移植(HSCT)患者和在HSCT后1.5年内访问长期随访(LTFU)诊所的护理人员的健康相关生活质量(HRQOL)与信息需求的实现之间的关系。方法:我们于2018年5月至12月在日本两所大学医院进行了横断面调查,采用自填问卷和医疗记录。根据以往研究和患者访谈,将患者和护理人员的信息需求分为一般信息、出院后治疗、副作用和并发症、自我保健、心理社会问题和社会资源。使用日本癌症治疗功能评估-骨髓移植(患者)和护理者生活质量指数-癌症(护理者)来测量患者和护理者的HRQOL。此外,利用R ver.3.6.0软件,采用混合回归的参与者-合作伙伴相互依赖模型方法对关系进行分析。结果:共分析16例患者和14例护理人员。FACT-BMT平均总分为91.0分,护理者生活质量指数-癌症平均总分为88.2分。对于患者和护理者而言,对副作用和并发症的信息需求的满足(估计值= 0.55,t (16) = 4.88, P < 0.001)和自我护理(估计值= 0.73,t (13) = 5.02, P < 0.001)对他们的HRQOL产生了行动者效应,而对心理社会问题的信息需求的满足(估计值= 0.35,t (13) = 2.90, P = 0.012)对双方的HRQOL产生了伙伴效应。结论:在移植后急性期,对患者及其护理人员采取多维的生理-社会心理方法对提高患者的HRQOL至关重要。出院前应提供患者心理社会问题的详细概述和处理方法,特别是对于无法访问LTFU诊所的护理人员。
本文章由计算机程序翻译,如有差异,请以英文原文为准。

Quality of life and informational needs for allogeneic hematopoietic stem cell transplant among patients and their caregivers visiting long-term follow-up clinic.

Quality of life and informational needs for allogeneic hematopoietic stem cell transplant among patients and their caregivers visiting long-term follow-up clinic.

Quality of life and informational needs for allogeneic hematopoietic stem cell transplant among patients and their caregivers visiting long-term follow-up clinic.

Purpose: To examine the relationship between health-related quality of life (HRQOL) and fulfillment of informational needs among patients for allogeneic hematopoietic stem cell transplant (HSCT) and caregivers who visit long-term follow-up (LTFU) clinics within 1.5 years of post-HSCT.

Methods: We conducted a cross-sectional survey at two university hospitals in Japan between May and December 2018 using self-administered questionnaires and medical records. Based on previous research and patient interviews, informational needs of patients and caregivers were categorized into general information, post-discharge treatments, side effects and complications, self-care, psychosocial problems, and social resources. The HRQOL of patients and caregivers was measured using the Japanese Functional Assessment of Cancer Therapy-Bone Marrow Transplant (for patients) and Caregiver Quality of Life Index-Cancer (for caregivers). In addition, the pooled-regression actor-partner interdependence model approach was employed to analyze the relationships using R ver.3.6.0.

Results: A total of 16 patients and 14 caregivers were analyzed. The mean total score of the FACT-BMT was 91.0, and the mean total score of the Caregiver Quality of Life Index-Cancer was 88.2. For both patients and caregivers, fulfillment of informational needs regarding side effects and complications (estimates = 0.55, t (16) = 4.88, P < 0.001) and self-care (estimates = 0.73, t (13) = 5.02, P < 0.001) exerted actor effects on their HRQOL, whereas fulfillment of informational needs regarding psychosocial problems (estimates = 0.35, t (13) = 2.90, P = 0.012) exerted a partner effect on the mutual HRQOL.

Conclusions: Multidimensional physio-psychosocial approaches toward patients and their caregivers are important to enhance their HRQOL during the acute phase after HSCT. Detailed overviews of and methods to cope with patients' psychosocial issues should be provided before discharge, especially for caregivers unable to visit the LTFU clinics.

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