Faculty of Medicine and Health, The University of Sydney, Sydney, NSW, Australia.
Melanoma Institute Australia, The University of Sydney, 40 Rocklands Road, Wollstonecraft, Sydney, NSW, 2065, Australia.
Qual Life Res. 2023 Dec;32(12):3531-3545. doi: 10.1007/s11136-023-03492-0. Epub 2023 Jul 31.
This study aimed to investigate the supportive care needs of Australian melanoma patients and their caregivers to form the basis for improving services.
General and melanoma-related supportive care needs in melanoma patients were measured using the SCNS-SF34 and SCNS-M12 respectively, whereas caregivers completed the SCNS-P&C. Patients also completed the MCQ-28 and FCRI-9, with all participants completing the QLQ-C30, DASS-21, and questions measuring utilisation and preference for supportive health services. Multivariable stepwise logistic regression was used to identify variables associated with unmet needs in melanoma patients.
A total of 56 early-stage patients, 100 advanced-stage patients, and 37 caregivers participated. At least three-quarters ([Formula: see text] 75%) of each participant group reported at least one unmet need. Of the ten most reported unmet needs in each participant group, at least six ([Formula: see text] 60%) were related to psychological and emotional well-being, with access to a psychologist the most desired service (> 25%). Fear of cancer recurrence was equally prevalent in both patient groups at a level indicative of need for intervention. Advanced-stage patients reported significantly (p < 0.05) more unmet psychological, physical and daily living, and sexuality needs, and significantly (p < 0.05) worse functioning than early-stage patients.
Australian melanoma patients and caregivers report substantial unmet supportive care needs, particularly regarding their psychological and emotional well-being. Psychological and emotional well-being services, such as access to a clinical psychologist or implementation of patient-reported outcome measures, should be incorporated into routine melanoma care to address unmet patient and caregiver needs and improve well-being.
本研究旨在调查澳大利亚黑色素瘤患者及其照顾者的支持性护理需求,为改善服务奠定基础。
使用 SCNS-SF34 和 SCNS-M12 分别测量黑色素瘤患者的一般和黑色素瘤相关的支持性护理需求,而照顾者则完成 SCNS-P&C。患者还完成了 MCQ-28 和 FCRI-9,所有参与者都完成了 QLQ-C30、DASS-21 和测量支持性健康服务的利用和偏好的问题。多变量逐步逻辑回归用于确定与黑色素瘤患者未满足需求相关的变量。
共有 56 名早期患者、100 名晚期患者和 37 名照顾者参与了研究。每个参与者组至少有四分之三([Formula: see text]75%)报告至少有一项未满足的需求。在每个参与者组中报告的十个最常见的未满足需求中,至少有六个([Formula: see text]60%)与心理和情绪健康有关,其中最需要的服务是获得心理学家的帮助(>25%)。癌症复发恐惧在两个患者组中同样普遍,表明需要干预。晚期患者报告的未满足的心理、身体和日常生活以及性功能需求明显(p<0.05)多于早期患者,且功能明显(p<0.05)较差。
澳大利亚黑色素瘤患者及其照顾者报告了大量未满足的支持性护理需求,特别是在心理和情绪健康方面。应将心理和情绪健康服务(如获得临床心理学家的帮助或实施患者报告的结果测量)纳入常规黑色素瘤护理中,以满足患者和照顾者的未满足需求,提高幸福感。