The personal impact of living with a myeloproliferative neoplasm

IF 3.3 2区医学 Q2 ONCOLOGY

Psycho‐Oncology Pub Date : 2024-04-13 DOI:10.1002/pon.6338

A. A. M. Eppingbroek, L. Lechner, E. C. Bakker, M. D. Nijkamp, M. A. de Witte, C. A. W. Bolman

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引用次数: 0

Abstract

ObjectiveThe aim of this study is to gain insight into the physical, psychological and social impact of having a myeloproliferative neoplasm (MPN), a rare type of cancer with an often chronic course.MethodsAn online survey was conducted among 455 Dutch MPN patients (62.7% female, age M 63) to explore the impact of the disease by measuring the MPN symptom burden (MPN‐SAF TSS) and quality of life (QoL) (EORTC QLQ‐C30) and its subscales within a hierarchical QoL model. We examined differences in MPN symptom burden and QoL in relation to sociodemographic and disease‐related factors. Hierarchical regression analysis was used to explain variances in QoL.ResultsMost patients (97%) experienced MPN‐related health complaints, with a significantly higher MPN symptom burden in women (M 31.50) compared to men (M 24.10). Regarding to fatigue and cognitive functioning MPN patients suffered more compared to a reference group of other cancers. MPN subtype or type of treatment did not show significant differences in MPN symptom burden or QoL. However, experiencing side effects, complications or comorbidities significantly negatively affected MPN symptom burden and QoL. 48.8% of patients reported that MPN affected their ability to work. The explained variance in overall QoL was 58%, most importantly by disease progression, comorbidities, MPN symptom burden and role, emotional and social functioning.ConclusionThis study revealed that having an MPN has a negative impact on several domains of QoL. Symptom assessment and support should be included in the healthcare management of MPN patients.

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骨髓增生性肿瘤对个人生活的影响

方法：我们对 455 名荷兰骨髓增生性肿瘤患者（62.7% 为女性，年龄为 63 岁）进行了在线调查，通过测量骨髓增生性肿瘤症状负担（MPN-SAF TSS）和生活质量（QoL）（EORTC QLQ-C30），以及分层 QoL 模型中的子量表来探讨疾病的影响。我们研究了 MPN 症状负担和 QoL 与社会人口和疾病相关因素的差异。结果大多数患者（97%）都有与 MPN 相关的健康问题，女性的 MPN 症状负担（中位数 31.50）明显高于男性（中位数 24.10）。与其他癌症的参照组相比，MPN 患者在疲劳和认知功能方面的痛苦更大。MPN亚型或治疗类型在MPN症状负担或QoL方面并无明显差异。但是，副作用、并发症或合并症对 MPN 症状负担和 QoL 有明显的负面影响。48.8%的患者表示 MPN 影响了他们的工作能力。总体 QoL 的解释方差为 58%，其中最重要的是疾病进展、合并症、MPN 症状负担以及角色、情感和社会功能。在对 MPN 患者进行医疗管理时，应包括症状评估和支持。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Psycho‐Oncology 医学-心理学

CiteScore

6.30

自引率

8.30%

发文量

220

审稿时长

3-8 weeks

期刊介绍： Psycho-Oncology is concerned with the psychological, social, behavioral, and ethical aspects of cancer. This subspeciality addresses the two major psychological dimensions of cancer: the psychological responses of patients to cancer at all stages of the disease, and that of their families and caretakers; and the psychological, behavioral and social factors that may influence the disease process. Psycho-oncology is an area of multi-disciplinary interest and has boundaries with the major specialities in oncology: the clinical disciplines (surgery, medicine, pediatrics, radiotherapy), epidemiology, immunology, endocrinology, biology, pathology, bioethics, palliative care, rehabilitation medicine, clinical trials research and decision making, as well as psychiatry and psychology. This international journal is published twelve times a year and will consider contributions to research of clinical and theoretical interest. Topics covered are wide-ranging and relate to the psychosocial aspects of cancer and AIDS-related tumors, including: epidemiology, quality of life, palliative and supportive care, psychiatry, psychology, sociology, social work, nursing and educational issues. Special reviews are offered from time to time. There is a section reviewing recently published books. A society news section is available for the dissemination of information relating to meetings, conferences and other society-related topics. Summary proceedings of important national and international symposia falling within the aims of the journal are presented.

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