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使用患者支持智能手机应用程序对癌症青少年和青年的生活质量进行改善:干预前后研究

Development of Quality of Life in Adolescents and Young Adults With Cancer Using a Patient Support Smartphone App: Prepost Interventional Study.

作者信息

Bentsen Line, Hanghøj Signe, Hjerming Maiken, Bergmann Mette Buur, Thycosen Marianne, Borup Anette, Larsen Camilla, Pappot Helle

机构信息

Department of Oncology, Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark.

Department of Haematology, Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark.

出版信息

JMIR Cancer. 2023 Dec 4;9:e49735. doi: 10.2196/49735.

Abstract

BACKGROUND

Adolescents and young adults often experience existential concerns in addition to side effects during a cancer trajectory, which they often carry alone. Thus, cohesion with other adolescents and young adults with cancer is essential but difficult due to the relatively small, widely dispersed nationwide population. In cocreation, a smartphone app has been developed and includes an information bank, a symptom tracker, and a social community platform, aiming to improve the quality of life (QoL) in this patient group.

OBJECTIVE

This nationwide, multicenter study aimed to investigate the QoL in adolescents and young adults undergoing a cancer trajectory as they used the app for 6 weeks.

METHODS

Via youth support initiatives, participants were recruited from hospitals in all regions of Denmark. Inclusion criteria were patients with cancer aged 15-29 years who either initiated any cancer treatment or started follow-up after cancer treatment within 30 days. Participants used the adolescents and young adults cancer app for 6 weeks. Before and after the 6 weeks of app use, they completed the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30). The participants were divided into a treatment and a follow-up group for analysis. A high score for a functional scale or the global health or overall QoL represents a high or healthy level of functioning or high QoL, respectively; however, a high score for a symptom scale or item represents a high level of symptomatology.

RESULTS

Overall, 81 participants were recruited. However, 4 participants did not answer the questionnaire and 6 participants did not use the app. In the treatment group (n=36), significant improvement was found in 2 domains: "Role functioning" (baseline median 33.33, IQR 16.67-83.33 vs 6 weeks median 66.67, IQR 33.33-83.33; P=.04) and "Pain" (baseline median 33.33, IQR 16.67-50.00 vs 6 weeks median 16.67, IQR 0.00-33.33; P=.04). The "Global health/Overall QoL" scale remained stable (baseline median 58.33, IQR 45.83-77.08 vs 6 weeks median 62.50, IQR 41.67-75.00; P=.25). In the follow-up group (n=35), significant improvement was found in 3 domains: "Physical functioning" (baseline median 79.23, IQR 73.33-93.33 vs 6 weeks median 82.86, IQR 73.33-100.00; P=.03), "Cognitive functioning" (baseline median 62.38, IQR 50.00-83.33 vs 6 weeks median 69.52, IQR 50.00-100.00; P=.02), and "Social functioning" (baseline median 76.19, IQR 50.00-100.00 vs 6 weeks median 85.71, IQR 83.33-100.00; P=.05), as well as in the "Global health/Overall QoL" scale (baseline median 57.14, IQR 83.33-100.00 vs 6 weeks median 75.0, IQR 62.91-85.73; P<.001).

CONCLUSIONS

In this study, we found an improvement in specific QoL scales for both participants in treatment and follow-up when using the app for 6 weeks. The global health or overall QoL score improved significantly in the follow-up group. In the treatment group, it remained stable.

INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/10098.

摘要

背景

青少年和青年在癌症治疗过程中,除了要承受副作用外,还常常面临生存方面的困扰,而这些困扰他们往往独自承担。因此,与其他患癌青少年和青年建立联系至关重要,但由于全国范围内这一群体人数相对较少且分布广泛,所以实现起来颇具难度。通过合作共创,一款智能手机应用程序得以开发,它包含一个信息库、一个症状跟踪器和一个社交社区平台,旨在改善这一患者群体的生活质量(QoL)。

目的

这项全国性的多中心研究旨在调查处于癌症治疗过程中的青少年和青年在使用该应用程序6周后的生活质量。

方法

通过青年支持倡议,从丹麦所有地区的医院招募参与者。纳入标准为年龄在15 - 29岁之间,正在接受任何癌症治疗或在癌症治疗后30天内开始随访的癌症患者。参与者使用青少年和青年癌症应用程序6周。在使用该应用程序6周前后,他们完成了欧洲癌症研究与治疗组织生活质量问卷核心30项(EORTC QLQ - C30)。参与者被分为治疗组和随访组进行分析。功能量表、全球健康或总体生活质量的高分分别代表高功能水平或健康水平、高生活质量;然而,症状量表或项目的高分代表高症状水平。

结果

总体而言,招募了81名参与者。然而,4名参与者未回答问卷,6名参与者未使用该应用程序。在治疗组(n = 36)中,发现2个领域有显著改善:“角色功能”(基线中位数33.33,四分位间距16.67 - 83.33,与6周时中位数66.67,四分位间距33.33 - 83.33;P = 0.04)和“疼痛”(基线中位数33.33,四分位间距16.67 - 50.00,与6周时中位数16.67,四分位间距0.00 - 33.33;P = 0.04)。“全球健康/总体生活质量”量表保持稳定(基线中位数58.33,四分位间距45.83 - 77.08,与6周时中位数62.50,四分位间距41.67 - 75.00;P = 0.25)。在随访组(n = 35)中,发现3个领域有显著改善:“身体功能”(基线中位数79.23,四分位间距73.33 - 93.33,与6周时中位数82.86,四分位间距73.33 - 100.00;P = 0.03)、“认知功能”(基线中位数62.38,四分位间距50.00 - 83.33,与6周时中位数69.52,四分位间距50.00 - 100.00;P = 0.02)和“社会功能”(基线中位数76.19,四分位间距50.00 - 100.00,与6周时中位数85.71,四分位间距83.33 - 100.00;P = 0.05),以及“全球健康/总体生活质量”量表(基线中位数57.14,四分位间距83.33 - 100.00,与6周时中位数75.0,四分位间距62.91 - 85.73;P < 0.001)。

结论

在本研究中,我们发现治疗组和随访组的参与者在使用该应用程序6周后,特定生活质量量表均有所改善。随访组的全球健康或总体生活质量得分显著提高。治疗组的该得分保持稳定。

国际注册报告识别号(IRRID):RR2 - 10.2196/10098。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/79b5/10734624/5dfb289ddd20/cancer_v9i1e49735_fig1.jpg

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