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Quality of life among older informal caregivers in Sweden: the role of loneliness and social isolation. 瑞典老年人非正式照顾者的生活质量:孤独和社会孤立的作用。
IF 2.7 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2026-02-01 DOI: 10.1007/s11136-025-04156-x
Mariam Kirvalidze, Maider Mateo-Abad, Giorgi Beridze, Amaya Bernal-Alonso, Maria João Forjaz, Carmen Rodríguez-Blázquez, Amaia Calderón-Larrañaga

Purpose: Older adults are increasingly taking up caregiving roles due to the mismatch between available formal care services and growing demands. We aimed to identify profiles of older caregivers according to their quality of life (QoL), and to explore the associations of such profiles with loneliness and social isolation.

Methods: A cross-sectional analysis was conducted using cohort data from the Swedish National study on Aging and Care in Kungsholmen (SNAC-K). The study included a total of 994 unique caregivers aged 60 and above, assessed between 2001 and 2016. Multiple correspondence analysis and cluster analysis were used to obtain caregiver profiles according to the items of SF-12 QoL instrument. Multinomial logistic regressions with robust standard errors were performed to study the associations between QoL, loneliness and social isolation.

Results: Three distinct QoL profiles were identified: good (57.9%), moderate (34.8%), and moderate physical, poor mental (7.3%) QoL. The latter profile was characterized by the predominance of female spousal caregivers, who provided the most hours of care. Loneliness and social isolation were independently associated with higher odds of being in the moderate physical, poor mental QoL profile, compared to the good QoL profile. Men with higher social isolation levels were more likely to be in the worse QoL profile compared to women with similarly high levels of isolation.

Conclusion: Our findings emphasize that a substantial proportion of older caregivers have suboptimal QoL, and that those with poor mental QoL also experience higher levels of loneliness and social isolation. Targeted policies to reduce caregiver burden and enhance their QoL are essential.

目的:由于现有的正规护理服务与日益增长的需求之间的不匹配,老年人越来越多地承担起护理角色。我们的目的是根据他们的生活质量(QoL)来确定老年照顾者的概况,并探讨这些概况与孤独和社会隔离的关系。方法:采用瑞典国家研究Kungsholmen老龄化与护理(SNAC-K)的队列数据进行横断面分析。该研究在2001年至2016年期间对994名60岁及以上的独特护理人员进行了评估。根据SF-12生活质量量表项目,采用多重对应分析和聚类分析获得护理人员资料。采用具有稳健标准误差的多项逻辑回归来研究生活质量、孤独感和社会隔离之间的关系。结果:确定了3种不同的生活质量特征:良好(57.9%)、中等(34.8%)和中等身体生活质量,较差的精神生活质量(7.3%)。后一种情况的特点是女性配偶照顾者占主导地位,她们提供的照顾时间最多。与生活质量良好的人相比,孤独和社会孤立与处于中等身体、较差精神生活质量状况的几率更高独立相关。与同样高度孤立的女性相比,社会孤立程度较高的男性生活质量更差。结论:我们的研究结果强调,相当一部分老年护理人员的生活质量不理想,而那些精神生活质量较差的人也会经历更高程度的孤独和社会隔离。有针对性的政策,以减轻照顾者的负担和提高他们的生活质量是必不可少的。
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引用次数: 0
Mixed-Methods to Define Meaningful Change using Exit Interviewand Clinical Trial Data in Patients with Tenosynovial Giant Cell Tumor (TGCT). 使用退出访谈和临床试验数据在腱鞘巨细胞瘤(TGCT)患者中定义有意义改变的混合方法。
IF 2.7 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2026-02-01 DOI: 10.1007/s11136-026-04162-7
Heather L Gelhorn, Katelyn N Cutts, Brooke Harrow, Christopher Tait, Amanda Saunders, Tsion Fikre, Yipin Han, Nicholas A Zeringo, Michiel Van De Sande, William Tap, Hans Gelderblom, Nicholas Bernthal

Background: Tenosynovial giant cell tumor (TGCT) is a locally aggressive neoplasm associated with limited range of motion (ROM), stiffness, joint damage, pain, and reduced physical functioning (PF). The MOTION Phase 3 trial (NCT05059262) was a randomized, placebo-controlled, double-blind study of vimseltinib among patients with TGCT. The objective of the current study was to define meaningful changes in clinical outcome assessments (COAs) measuring active ROM, PF, and stiffness using qualitative and quantitative data from patients in the MOTION trial.

Methods: Embedded exit interviews with patients in MOTION were conducted to explore meaningful changes in Patient Global Impression of Change (PGIC) anchors, active ROM, Patient-Reported Outcomes Measurement Information System (PROMIS)-PF, and Worst Stiffness numeric rating scale (NRS). Anchor- and distribution-based analyses of the MOTION data, informed by the exit interviews, were used to define responder thresholds.

Results: In the MOTION trial, 96/123 patients (78%) completed an exit interview. Most considered "minimally improved" responses for each question (PGIC-PF: 67%; PGIC-ROM 73%) as meaningful. Responder estimates ranged from 1.45 to 4.9 (PROMIS-PF), from 6.0 to 14.8 (active ROM), and from - 2.3 to - 0.5 (Stiffness). The cumulative distribution function curves show a clear separation between treatment groups at a wide range of values around the proposed thresholds.

Conclusions: The responder definitions were at least a 3-point improvement for PROMIS-PF, a 10% improvement for active ROM, and a 2-point improvement for the Worst Stiffness NRS. Qualitative interviews facilitate integrating the patient perspective in the selection of anchors and defining meaningful change.

背景:腱鞘巨细胞瘤(TGCT)是一种局部侵袭性肿瘤,与活动范围受限(ROM)、僵硬、关节损伤、疼痛和身体功能降低(PF)相关。MOTION 3期试验(NCT05059262)是一项随机、安慰剂对照、双盲研究,在TGCT患者中使用vimseltinib。本研究的目的是利用MOTION试验中患者的定性和定量数据,确定临床结果评估(coa)测量活动ROM、PF和僵硬度的有意义的变化。方法:对处于运动状态的患者进行嵌入式退出访谈,以探索患者总体变化印象(PGIC)锚点、活动ROM、患者报告结果测量信息系统(PROMIS)-PF和最坏刚度数值评定量表(NRS)的有意义变化。基于锚点和分布的MOTION数据分析,通过离职访谈获得信息,用于定义应答者阈值。结果:在MOTION试验中,96/123名患者(78%)完成了离职面谈。大多数人认为每个问题的“最低限度改善”回答(PGIC-PF: 67%; PGIC-ROM: 73%)是有意义的。应答者的估计值范围从1.45到4.9 (promise - pf),从6.0到14.8(活动ROM),从- 2.3到- 0.5(刚度)。累积分布函数曲线显示,在建议阈值周围的广泛范围内,治疗组之间存在明显的分离。结论:应答者的定义是promise - pf至少改善了3分,主动ROM改善了10%,最差刚度NRS改善了2分。定性访谈有助于在选择锚点和定义有意义的改变时整合患者的观点。
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引用次数: 0
Analysis of quality-adjusted survival time without symptoms or toxicity for pembrolizumab plus chemotherapy as treatment for previously untreated participants with advanced or metastatic esophageal cancer. pembrolizumab联合化疗作为先前未治疗的晚期或转移性食管癌患者的治疗,无症状或毒性的质量调整生存时间分析。
IF 2.7 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2026-02-01 DOI: 10.1007/s11136-025-04109-4
Ying Zhang, Marc Diez Garcia, Sukrut Shah, Seongjung Joo, Adriana Valderrama, Shujing Zhang, Peter C Enzinger
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引用次数: 0
Changes in health-related quality of life during outpatient rehabilitation: a prospective observational cohort study in four patient groups. 门诊康复期间健康相关生活质量的变化:一项针对四组患者的前瞻性观察队列研究
IF 2.7 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2026-02-01 DOI: 10.1007/s11136-026-04167-2
Daniëlla M Oosterveer, Maud E H Ophelders, Bianca M P Mourits, Eline W M Scholten, Johanna M A Visser-Meily, Joris A de Graaf

Purpose: To evaluate changes in health-related quality of life (HRQoL) of different patient groups, as measured using the EuroQoL (EQ5D) during outpatient multidisciplinary rehabilitation.

Methods: Patients with acquired brain injury, chronic pain, neurodegenerative diseases or oncological diagnoses, who received outpatient multidisciplinary rehabilitation, were included in a multi-center prospective observational cohort study. They completed the EQ5D, consisting of an index and a Visual Analogue Scale (VAS), at the start of outpatient rehabilitation (T0) and 6 months thereafter (T1), and two perceived change questions (about quality of life and about general health) at T1.

Results: Both EQ5D index and VAS improved for the total sample (n = 419, 68.8% females, mean age 54.5 years) and for each patient group, with the exception of the EQ5D VAS in patients with neurodegenerative diseases. The latter group showed less improvement, as measured on the EQ5D index, than patients with chronic pain (p = 0.004), and less on VAS compared to the other patient groups (all p < 0.05). At an individual level, 76.8% (304/396) of all patients reported improvement on the perceived change question about quality of life and 279/419 (66.6%) on the perceived change question about general health. Again, patients with neurodegenerative diseases had the lowest percentages (49/83 (59.0%) and 39/85 (47.0%), respectively).

Conclusion: All patient groups improved on HRQoL during outpatient multidisciplinary rehabilitation, both at group and individual level. However, patients with neurodegenerative diseases showed slightly less improvement than other patient groups, which may reflect the progressive nature of their disease rather than lower rehabilitation effectiveness.

目的:评价不同患者组在门诊多学科康复期间使用EuroQoL (EQ5D)测量的健康相关生活质量(HRQoL)的变化。方法:采用多中心前瞻性观察队列研究方法,对接受门诊多学科康复治疗的获得性脑损伤、慢性疼痛、神经退行性疾病或肿瘤患者进行研究。他们在门诊康复开始(T0)和6个月后(T1)完成了EQ5D,包括指数和视觉模拟量表(VAS),并在T1完成了两个感知变化问题(关于生活质量和一般健康)。结果:除了神经退行性疾病患者的EQ5D VAS外,总样本(n = 419,女性68.8%,平均年龄54.5岁)和每个患者组的EQ5D指数和VAS均有所改善。以EQ5D指数衡量,后者的改善程度低于慢性疼痛患者(p = 0.004), VAS的改善程度低于其他患者组(均为p)。结论:在门诊多学科康复期间,所有患者组的HRQoL均有改善,无论是在群体水平还是个人水平上。然而,神经退行性疾病患者的改善程度略低于其他患者组,这可能反映了其疾病的进行性,而不是较低的康复效果。
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引用次数: 0
Impact of adverse childhood experiences on health-related quality of life in Australian women with endometriosis: a population-based cohort study. 儿童期不良经历对澳大利亚子宫内膜异位症妇女健康相关生活质量的影响:一项基于人群的队列研究
IF 2.7 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2026-02-01 DOI: 10.1007/s11136-025-04160-1
Dereje G Gete, Jenny Doust, Sally Mortlock, Jason Abbott, Gita D Mishra
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引用次数: 0
What constitutes important change in individual PROMIS-10 global health items in patients with high-impact chronic pain: a qualitative interview study. 高影响慢性疼痛患者的个体promise -10全球健康项目的重要变化:一项定性访谈研究
IF 2.7 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2026-01-22 DOI: 10.1007/s11136-026-04164-5
Emily Sophia Madley, Daniel Broholm, Sophie Lykkegaard Ravn, Henrik Bjarke Vaegter
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引用次数: 0
Identifying key outcome domains with underlying specific patient-reported outcomes for psychomotor therapy in mental health care in the Netherlands: a multi-phased qualitative study. 确定关键结果域与潜在的特定患者报告的结果在荷兰精神卫生保健的精神运动治疗:一项多阶段定性研究。
IF 2.7 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2026-01-21 DOI: 10.1007/s11136-025-04119-2
Albertine de Haan, Janet Moeijes, Mia Scheffers, Philip van der Wees
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引用次数: 0
Stakeholder perspectives on the use of patient-reported outcome measures in colorectal cancer survivorship care in general practice: qualitative study using interviews. 利益相关者对在一般实践中使用患者报告的结直肠癌生存护理结果措施的观点:使用访谈的定性研究。
IF 2.7 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2026-01-21 DOI: 10.1007/s11136-025-04116-5
Bora Kim, Marguerite Tracy, Cheri Ostroff, Janani Mahadeva, Julie Marker, Kate White, Simon Willcock, Claudia Rutherford
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引用次数: 0
The association between loneliness and quality of life in cancer survivors: All of Us research program. 孤独与癌症幸存者生活质量的关系:我们所有人的研究项目。
IF 2.7 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2026-01-14 DOI: 10.1007/s11136-025-04159-8
Hyunjung Lee, Ding Quan Ng, Dongjun Lee, Jordan Baeker Bispo, Ahmedin Jemal, Farhad Islami

Introduction: Cancer survivors may experience loneliness, which can impair the capacity to self-regulate lifestyle behaviors, induce systemic inflammation, and deteriorate mental and physical health. Previous studies have found an association between loneliness and health outcomes in the general population, but few studies have examined health effects of loneliness among cancer survivors and its differential effects by sociodemographic characteristics.

Methods: In a cross-sectional analysis of All of Us Research program data, we examined the association between loneliness (defined using the UCLA-3 items loneliness scale) and overall quality of life and four other health outcomes among cancer survivors aged ≥ 18 years in the United States (N = 17,367).

Results: Lonely cancer survivors were more likely to have fair/poor overall quality of life, severe pain, severe fatigue, and fair/poor physical and mental health compared to non-lonely cancer survivors, controlling for multiple health behaviors and sociodemographic factors. Models stratified by sociodemographic characteristics generally showed similar results, but differences existed between some age, sex, and living arrangement subgroups. For example, the association between loneliness and fair/poor mental health was stronger among older survivors (≥ 65 years, AOR = 5.30; 95% CI = 4.30-6.54) than younger survivors (18-39 years, AOR = 3.07; 95% CI = 1.95-4.85); p for difference < 0.05. The association between loneliness and severe fatigue was stronger among survivors living alone (AOR = 3.15; 95% CI = 2.33-4.25) than survivors living with others (AOR = 2.16; 95% CI = 1.81-2.59); p < 0.05.

Conclusions: Loneliness generally showed adverse association with all evaluated health outcomes, but the magnitude of associations varied between certain subpopulations. Results of this study suggest the need for screening and monitoring of loneliness among cancer survivors.

导言:癌症幸存者可能会感到孤独,这会削弱自我调节生活方式行为的能力,诱发全身性炎症,并恶化精神和身体健康。以前的研究发现,在一般人群中,孤独与健康结果之间存在关联,但很少有研究调查孤独感对癌症幸存者的健康影响,以及孤独感对社会人口特征的不同影响。方法:在All of Us Research项目数据的横断面分析中,我们检查了美国年龄≥18岁的癌症幸存者(N = 17,367)的孤独感(使用UCLA-3项目孤独感量表定义)与总体生活质量和其他四种健康结局之间的关系。结果:在控制多种健康行为和社会人口因素的情况下,与非孤独的癌症幸存者相比,孤独的癌症幸存者更有可能具有一般/较差的总体生活质量、严重的疼痛、严重的疲劳和一般/较差的身心健康。按社会人口特征分层的模型总体上显示出相似的结果,但在一些年龄、性别和生活安排亚组之间存在差异。例如,年龄较大的幸存者(≥65岁,AOR = 5.30; 95% CI = 4.30-6.54)比年龄较小的幸存者(18-39岁,AOR = 3.07; 95% CI = 1.95-4.85)孤独感和一般/不良心理健康之间的关联更强;结论:孤独感总体上与所有评估的健康结果存在不良关联,但关联程度在某些亚人群之间存在差异。这项研究的结果表明,有必要筛查和监测癌症幸存者的孤独感。
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引用次数: 0
Sex differences in health-related quality of life after renal cell carcinoma surgery: a population-based study in Sweden. 肾细胞癌手术后健康相关生活质量的性别差异:瑞典一项基于人群的研究
IF 2.7 3区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2026-01-14 DOI: 10.1007/s11136-025-04157-w
Stephanie E Bonn, Bodil Westman, Maria E C Schelin, Christel Hedman, Börje Ljungberg, Andreas Karlsson Rosenblad

Purpose: To examine sex differences in health-related quality of life (HRQoL) among patients surgically treated for renal cell carcinoma (RCC) in Sweden, utilizing data from the National Swedish Kidney Cancer Register (NSKCR).

Methods: In this study of 4658 surgically treated RCC patients, data on HRQoL, clinical, demographic, and socioeconomic characteristics were retrieved from the NSKCR for patients undergoing surgical treatment between January 2016, and April 2024. HRQoL was measured using the 14- and 19-item versions of the Functional Assessment of Cancer Therapy - Kidney Symptom Index (FKSI-14/19) instrument six months after surgery. The association between sex and HRQoL was estimated using linear regression. Separate analyses were performed for the FKSI-14 and FKSI-19 total scores and underlying domains.

Results: In total, 3086 (66.3%) men and 1572 (33.7%) women were included. After adjusting for clinical, demographic, and socioeconomic characteristics, male sex was significantly associated with higher HRQoL. Specifically, men had higher scores, indicating fewer symptoms, for physical and mental symptoms according to FKSI-14 (P < 0.001), and for physical (P < 0.001) and emotional (P < 0.001) disease-related symptoms, as well as treatment side effects (P < 0.022), according to FKSI-19. Total HRQoL was significantly higher in men, according to both the FKSI-14 (P < 0.001) and the FKSI-19 (P < 0.001).

Conclusions: HRQoL differed significantly between men and women six months after surgery, with men reporting higher HRQoL, even after accounting for clinical, demographic, and socioeconomic factors. Healthcare professionals should be aware of the risk of lower HRQoL among female patients.

目的:利用瑞典国家肾癌登记处(NSKCR)的数据,研究瑞典手术治疗肾细胞癌(RCC)患者健康相关生活质量(HRQoL)的性别差异。方法:在这项研究中,4658例手术治疗的RCC患者,从2016年1月至2024年4月接受手术治疗的患者的NSKCR中检索HRQoL、临床、人口统计学和社会经济特征的数据。HRQoL在手术后6个月采用14项和19项版本的癌症治疗功能评估-肾脏症状指数(FKSI-14/19)仪器进行测量。使用线性回归估计性别与HRQoL之间的关系。分别对FKSI-14和FKSI-19总分和基础域进行分析。结果:共纳入男性3086例(66.3%),女性1572例(33.7%)。在对临床、人口统计学和社会经济特征进行调整后,男性与较高的HRQoL显著相关。具体来说,根据FKSI-14,男性在身体和精神症状方面得分较高,表明症状较少(P结论:男性和女性在手术后6个月的HRQoL差异显著,即使在考虑了临床、人口统计学和社会经济因素后,男性报告的HRQoL更高。医疗保健专业人员应该意识到女性患者HRQoL较低的风险。
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引用次数: 0
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Quality of Life Research
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