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Effects of Web-Based and Mobile Self-Care Support in Addition to Standard Care in Patients After Radical Prostatectomy: Randomized Controlled Trial. 基于网络和移动自我护理支持对前列腺癌根治术后患者标准护理的影响:随机对照试验。
IF 2.8 Q2 ONCOLOGY Pub Date : 2023-09-06 DOI: 10.2196/44320
Camilla Wennerberg, Amanda Hellström, Kristina Schildmeijer, Mirjam Ekstedt

Background: Prostate cancer is a common form of cancer that is often treated with radical prostatectomy, which can leave patients with urinary incontinence and sexual dysfunction. Self-care (pelvic floor muscle exercises and physical activity) is recommended to reduce the side effects. As more and more men are living in the aftermath of treatment, effective rehabilitation support is warranted. Digital self-care support has the potential to improve patient outcomes, but it has rarely been evaluated longitudinally in randomized controlled trials. Therefore, we developed and evaluated the effects of digital self-care support (electronic Patient Activation in Treatment at Home [ePATH]) on prostate-specific symptoms.

Objective: This study aimed to investigate the effects of web-based and mobile self-care support on urinary continence, sexual function, and self-care, compared with standard care, at 1, 3, 6, and 12 months after radical prostatectomy.

Methods: A multicenter randomized controlled trial with 2 study arms was conducted, with the longitudinal effects of additional digital self-care support (ePATH) compared with those of standard care alone. ePATH was designed based on the self-determination theory to strengthen patients' activation in self-care through nurse-assisted individualized modules. Men planned for radical prostatectomy at 3 county hospitals in southern Sweden were included offline and randomly assigned to the intervention or control group. The effects of ePATH were evaluated for 1 year after surgery using self-assessed questionnaires. Linear mixed models and ordinal regression analyses were performed.

Results: This study included 170 men (85 in each group) from January 2018 to December 2019. The participants in the intervention and control groups did not differ in their demographic characteristics. In the intervention group, 64% (53/83) of the participants used ePATH, but the use declined over time. The linear mixed model showed no substantial differences between the groups in urinary continence (β=-5.60; P=.09; 95% CI -12.15 to -0.96) or sexual function (β=-.12; P=.97; 95% CI -7.05 to -6.81). Participants in the intervention and control groups did not differ in physical activity (odds ratio 1.16, 95% CI 0.71-1.89; P=.57) or pelvic floor muscle exercises (odds ratio 1.51, 95% CI 0.86-2.66; P=.15).

Conclusions: ePATH did not affect postoperative side effects or self-care but reflected how this support may work in typical clinical conditions. To complement standard rehabilitation, digital self-care support must be adapted to the context and individual preferences for use and effect.

Trial registration: ISRCTN Registry ISRCTN18055968; https://www.isrctn.com/ISRCTN18055968.

International registered report identifier (irrid): RR2-10.2196/11625.

背景:前列腺癌症是癌症的一种常见形式,通常采用根治性前列腺切除术治疗,这会使患者出现尿失禁和性功能障碍。建议进行自我护理(盆底肌肉锻炼和体育活动)以减少副作用。随着越来越多的男性生活在治疗后,有效的康复支持是必要的。数字自我护理支持有可能改善患者的预后,但在随机对照试验中很少对其进行纵向评估。因此,我们开发并评估了数字自我护理支持(电子患者在家治疗激活[ePATH])对前列腺特异性症状的影响。目的:本研究旨在研究与标准护理相比,在根治性前列腺切除术后1、3、6和12个月,网络和移动自我护理支持对尿失禁、性功能和自我护理的影响。方法:对2个研究组进行了一项多中心随机对照试验,比较了额外数字自我护理支持(ePATH)与单独标准护理的纵向效果。ePATH是基于自主理论设计的,旨在通过护士辅助的个性化模块来加强患者在自我护理中的激活。计划在瑞典南部3家县医院进行根治性前列腺切除术的男性被离线纳入,并被随机分配到干预组或对照组。使用自我评估问卷对ePATH在手术后1年的效果进行评估。进行线性混合模型和有序回归分析。结果:本研究纳入了2018年1月至2019年12月的170名男性(每组85人)。干预组和对照组的参与者在人口统计学特征上没有差异。在干预组中,64%(53/83)的参与者使用ePATH,但使用量随着时间的推移而下降。线性混合模型显示,两组在尿失禁(β=5.60;P=.09;95%CI-12.15至-0.96)或性功能(β=.12;P=.97;95%CI-7.05至-6.81)方面没有显著差异。干预组和对照组的参与者在体育活动(比值比1.16,95%CI0.71-1.89;P=.57)或盆底肌肉锻炼方面没有差异(比值比1.51,95%CI 0.86-2.66;P=.15)。结论:ePATH不会影响术后副作用或自我护理,但反映了这种支持在典型临床条件下的作用。为了补充标准康复,数字自我护理支持必须适应环境和个人的使用和效果偏好。试验注册:ISRCTNRegistry ISRCTN18055968;https://www.isrctn.com/ISRCTN18055968.International注册报告标识符(irrid):RR2-10.2196/11625。
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引用次数: 0
Data-Efficient Computational Pathology Platform for Faster and Cheaper Breast Cancer Subtype Identifications: Development of a Deep Learning Model. 用于更快、更便宜的癌症亚型识别的高效数据计算病理学平台:深度学习模型的开发。
IF 2.8 Q2 ONCOLOGY Pub Date : 2023-09-05 DOI: 10.2196/45547
Kideog Bae, Young Seok Jeon, Yul Hwangbo, Chong Woo Yoo, Nayoung Han, Mengling Feng

Background: Breast cancer subtyping is a crucial step in determining therapeutic options, but the molecular examination based on immunohistochemical staining is expensive and time-consuming. Deep learning opens up the possibility to predict the subtypes based on the morphological information from hematoxylin and eosin staining, a much cheaper and faster alternative. However, training the predictive model conventionally requires a large number of histology images, which is challenging to collect by a single institute.

Objective: We aimed to develop a data-efficient computational pathology platform, 3DHistoNet, which is capable of learning from z-stacked histology images to accurately predict breast cancer subtypes with a small sample size.

Methods: We retrospectively examined 401 cases of patients with primary breast carcinoma diagnosed between 2018 and 2020 at the Department of Pathology, National Cancer Center, South Korea. Pathology slides of the patients with breast carcinoma were prepared according to the standard protocols. Age, gender, histologic grade, hormone receptor (estrogen receptor [ER], progesterone receptor [PR], and androgen receptor [AR]) status, erb-B2 receptor tyrosine kinase 2 (HER2) status, and Ki-67 index were evaluated by reviewing medical charts and pathological records.

Results: The area under the receiver operating characteristic curve and decision curve were analyzed to evaluate the performance of our 3DHistoNet platform for predicting the ER, PR, AR, HER2, and Ki67 subtype biomarkers with 5-fold cross-validation. We demonstrated that 3DHistoNet can predict all clinically important biomarkers (ER, PR, AR, HER2, and Ki67) with performance exceeding the conventional multiple instance learning models by a considerable margin (area under the receiver operating characteristic curve: 0.75-0.91 vs 0.67-0.8). We further showed that our z-stack histology scanning method can make up for insufficient training data sets without any additional cost incurred. Finally, 3DHistoNet offered an additional capability to generate attention maps that reveal correlations between Ki67 and histomorphological features, which renders the hematoxylin and eosin image in higher fidelity to the pathologist.

Conclusions: Our stand-alone, data-efficient pathology platform that can both generate z-stacked images and predict key biomarkers is an appealing tool for breast cancer diagnosis. Its development would encourage morphology-based diagnosis, which is faster, cheaper, and less error-prone compared to the protein quantification method based on immunohistochemical staining.

背景:乳腺癌症分型是确定治疗方案的关键步骤,但基于免疫组织化学染色的分子检查昂贵且耗时。深度学习为基于苏木精和伊红染色的形态学信息预测亚型开辟了可能性,这是一种更便宜、更快的替代方法。然而,训练预测模型通常需要大量的组织学图像,这对于单个研究所来说是一个挑战。目的:我们旨在开发一个数据高效的计算病理学平台3DHistoNet,该平台能够从z堆叠的组织学图像中学习,以小样本量准确预测乳腺癌症亚型。方法:我们回顾性检查了2018年至2020年间在韩国国家癌症中心病理科诊断的401例原发性乳腺癌患者。根据标准方案制备乳腺癌患者的病理切片。年龄、性别、组织学分级、激素受体(雌激素受体[ER]、孕激素受体[PR]和雄激素受体[AR])状态、erb-B2受体酪氨酸激酶2(HER2)状态和Ki-67指数通过查阅病历和病理记录进行评估。结果:分析受试者操作特征曲线和决策曲线下面积,以评估我们的3DHistoNet平台在预测ER、PR、AR、HER2和Ki67亚型生物标志物方面的性能,并进行5倍交叉验证。我们证明3DHistoNet可以预测所有临床上重要的生物标志物(ER、PR、AR、HER2和Ki67),其性能大大超过传统的多实例学习模型(受试者操作特征曲线下面积:0.75-0.91 vs 0.67-0.8)。我们进一步证明,我们的z堆栈组织学扫描方法可以弥补训练数据不足的不足无需任何额外费用。最后,3DHistoNet提供了生成注意力图的额外功能,该功能揭示了Ki67和组织形态学特征之间的相关性,从而使苏木精和伊红图像对病理学家具有更高的保真度。结论:我们的独立、数据高效的病理学平台既可以生成z叠加图像,又可以预测关键生物标志物,是癌症诊断的一个有吸引力的工具。它的发展将鼓励基于形态学的诊断,与基于免疫组织化学染色的蛋白质定量方法相比,这种方法更快、更便宜、更不容易出错。
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引用次数: 0
Advanced Messaging Intervention for Medication Adherence and Clinical Outcomes Among Patients With Cancer: Randomized Controlled Trial. 癌症患者药物依从性和临床结果的高级信息干预:随机对照试验。
IF 2.8 Q2 ONCOLOGY Pub Date : 2023-08-31 DOI: 10.2196/44612
Chen-Xu Ni, Wen-Jie Lu, Min Ni, Fang Huang, Dong-Jie Li, Fu-Ming Shen

Background: Medication adherence is crucial for improving clinical outcomes in the treatment of patients with cancer. The lack of adherence and adverse drug reactions can reduce the effectiveness of cancer therapy including the quality of life. The commonly used intervention methods for medication adherence continue to evolve, and the age of fifth-generation (5G) messaging has arrived.

Objective: In this study, we conducted a prospective, pilot randomized controlled trial to evaluate the effect of 5G messaging on medication adherence and clinical outcomes among patients with cancer in China.

Methods: The research population was patients with nonsmall cell lung cancer undergoing pemetrexed chemotherapy who require regular folic acid (FA) and vitamin B12 supplements. The intervention and control groups were assigned to 5G messaging and second-generation (2G) messaging, respectively. The patients' medication adherence and quality of life were assessed at baseline and 1-month and 3-month time points. Moreover, the chemotherapy-related hematologic or nonhematologic toxicities, as well as the serum levels of FA and vitamin B12, were measured.

Results: Of the 567 patients assessed for eligibility between January and May 2021, a total of 154 (27.2%) patients were included. Overall, 80 were randomized to the control group and 74 to the intervention group. The odds of adherence in the 5G messaging intervention group were significantly higher than the control group at the 1-month (62/69, 90% vs 56/74, 76%; adjusted odds ratio 2.67, 95% CI 1.02-7.71) and 3-month (50/60, 83% vs 48/64, 75%; adjusted odds ratio 2.36, 95% CI 1.00-5.23) time points. Correspondingly, the FA and vitamin B12 serum levels of patients in the 5G messaging group were higher than those of the control group. Regarding hematologic toxicities, only the incidence of leukopenia in the intervention group was lower than that in the control group (25/80, 31% in the control group vs 12/74, 16% in the intervention group; P=.04). There were no differences in nonhematologic toxicities and quality of life between the 2 groups.

Conclusions: In summary, we conclude that compared with conventional 2G text-based messaging, a 5G messaging intervention can better improve medication adherence and clinical outcome among patients with cancer.

Trial registration: Chinese Clinical Trial Registry ChiCTR2200058188; https://www.chictr.org.cn/showproj.html?proj=164489.

背景:药物依从性对改善癌症患者治疗的临床结果至关重要。缺乏依从性和药物不良反应会降低癌症治疗的有效性,包括生活质量。常用的药物依从性干预方法不断发展,第五代(5G)消息传递时代已经到来。目的:在本研究中,我们进行了一项前瞻性、先导性随机对照试验,以评估5G信息对中国癌症患者药物依从性和临床结局的影响。方法:研究人群为接受培美曲塞化疗且需要定期补充叶酸(FA)和维生素B12的非小细胞肺癌患者。干预组和对照组分别被分配到5G消息传递和第二代(2G)消息传递。在基线、1个月和3个月时间点评估患者的药物依从性和生活质量。此外,还测量了化疗相关的血液学或非血液学毒性,以及血清FA和维生素B12水平。结果:在2021年1月至5月期间评估的567例患者中,共有154例(27.2%)患者被纳入。总的来说,80人被随机分配到对照组,74人被随机分配到干预组。5G短信干预组患者1个月的依从率显著高于对照组(62/69,90% vs 56/74, 76%;调整优势比2.67,95% CI 1.02-7.71)和3个月(50/60,83% vs 48/64, 75%;校正优势比2.36,95% CI 1.00-5.23)时间点。相应的,5G短信组患者血清FA和维生素B12水平均高于对照组。在血液学毒性方面,只有干预组白细胞减少发生率低于对照组(对照组为25/ 80,31 %,干预组为12/ 74,16 %;P = .04点)。两组患者的非血液学毒性及生活质量均无差异。结论:综上所述,我们得出结论,与传统的2G短信相比,5G短信干预可以更好地改善癌症患者的药物依从性和临床结果。试验注册:中国临床试验注册中心ChiCTR2200058188;https://www.chictr.org.cn/showproj.html?proj=164489。
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引用次数: 0
Smartphone-Based Psychotherapeutic Interventions in Blended Care of Cancer Survivors: Nested Randomized Clinical Trial. 基于智能手机的心理治疗干预在癌症幸存者的混合护理:嵌套随机临床试验。
IF 2.8 Q2 ONCOLOGY Pub Date : 2023-08-28 DOI: 10.2196/38515
Gunther Meinlschmidt, Astrid Grossert, Cornelia Meffert, Noa Roemmel, Viviane Hess, Christoph Rochlitz, Miklos Pless, Sabina Hunziker, Brigitta Wössmer, Ulfried Geuter, Rainer Schaefert
<p><strong>Background: </strong>Cancer is related to not only physical but also mental suffering. Notably, body image disturbances are highly relevant to cancer-related changes often persisting beyond recovery from cancer. Scalable and low-barrier interventions that can be blended with face-to-face psychotherapy for cancer survivors are highly warranted.</p><p><strong>Objective: </strong>The aim of the study is to investigate whether smartphone-based bodily interventions are more effective to improve the mood of patients with cancer than smartphone-based fairy tale interventions (control intervention).</p><p><strong>Methods: </strong>We recruited patients with cancer in 2 Swiss hospitals and conducted daily, fully automated smartphone-based interventions 6 times a week for 5 consecutive weeks, blended with weekly face-to-face group body psychotherapy. We applied 2 types of smartphone-based interventions using a within-subject design, randomly assigning patients daily to either bodily interventions or fairy tales. Each intervention type was presented 3 times a week. For this secondary analysis, 3-level mixed models were estimated with mood assessed by the 3 Multidimensional Mood Questionnaire subscales for good-bad mood, wakefulness, and calmness as key indicators. In addition, the effects on experience of presence, vitality, and burden assessed with visual analog scales were investigated.</p><p><strong>Results: </strong>Based on the data from s=732 interventions performed by 36 participants, good-bad mood improved (β=.27; 95% CI 0.062-0.483), and participants became calmer (β=.98; 95% CI 0.740-1.211) following smartphone-based interventions. Wakefulness did not significantly change from pre- to postsmartphone-based intervention (β=.17; 95% CI -0.081 to 0.412). This was true for both intervention types. There was no interaction effect of intervention type with change in good-bad mood (β=-.01; 95% CI -0.439 to 0.417), calmness (β=.22; 95% CI -0.228 to 0.728), or wakefulness (β=.14; 95% CI -0.354 to 0.644). Experience of presence (β=.34; 95% CI 0.271-0.417) and vitality (β=.35; 95% CI 0.268-0.426) increased from pre- to postsmartphone-based intervention, while experience of burden decreased (β=-0.40; 95% CI -0.481 to 0.311). Again, these effects were present for both intervention types. There were no significant interaction effects of intervention type with pre- to postintervention changes in experience of presence (β=.14; 95% CI -0.104 to 0.384), experience of vitality (β=.06; 95% CI -0.152 to 0.265), and experience of burden (β=-.16; 95% CI -0.358 to 0.017).</p><p><strong>Conclusions: </strong>Our results suggest that both smartphone-based audio-guided bodily interventions and fairy tales have the potential to improve the mood of cancer survivors.</p><p><strong>Trial registration: </strong>ClinicalTrials.gov NCT03707548; https://clinicaltrials.gov/study/NCT03707548.</p><p><strong>International registered report identifier (irrid): </strong>RR2-10.
背景:癌症不仅与身体上的痛苦有关,而且与精神上的痛苦有关。值得注意的是,身体形象障碍与癌症相关的变化高度相关,这些变化往往持续到癌症康复之后。可扩展和低障碍的干预措施可以与面对面的心理治疗相结合,对癌症幸存者来说是非常必要的。目的:本研究旨在探讨基于智能手机的身体干预是否比基于智能手机的童话干预(对照干预)更有效地改善癌症患者的情绪。方法:我们招募了瑞士2家医院的癌症患者,每周进行6次全自动智能手机干预,连续5周,并结合每周面对面的团体身体心理治疗。我们采用了两种基于智能手机的干预,采用了受试者内设计,每天随机分配患者进行身体干预或童话故事。每种干预方式每周进行3次。在这一次要分析中,采用3个层次的混合模型进行估计,并通过3个多维情绪问卷子量表评估情绪,以好坏情绪、清醒和平静为关键指标。此外,研究了视觉模拟量表对存在体验、活力体验和负担体验的影响。结果:根据36名参与者进行的s=732项干预的数据,好坏情绪得到改善(β= 0.27;95% CI 0.062-0.483),参与者变得更平静(β= 0.98;95% CI 0.740-1.211)。在智能手机干预前后,清醒程度没有显著变化(β= 0.17;95% CI -0.081至0.412)。这两种干预类型都是如此。干预类型与好坏情绪变化无交互作用(β=- 0.01;95% CI -0.439 ~ 0.417),镇静(β= 0.22;95% CI -0.228 ~ 0.728)或清醒状态(β= 0.14;95% CI -0.354至0.644)。在场体验(β= 0.34;95% CI 0.271-0.417)和活力(β= 0.35;95% CI 0.268-0.426)从智能手机干预前到干预后增加,而负担体验减少(β=-0.40;95% CI -0.481至0.311)。同样,这些影响在两种干预类型中都存在。干预类型与干预前后存在体验的变化没有显著的交互作用(β=.14;95% CI -0.104 ~ 0.384),活力体验(β= 0.06;95% CI -0.152至0.265),以及负担经历(β=- 0.16;95% CI -0.358至0.017)。结论:我们的研究结果表明,基于智能手机的音频引导身体干预和童话故事都有可能改善癌症幸存者的情绪。试验注册:ClinicalTrials.gov NCT03707548;https://clinicaltrials.gov/study/NCT03707548.International注册报告标识符(irrid): RR2-10.1186/s40359-019-0357-1。
{"title":"Smartphone-Based Psychotherapeutic Interventions in Blended Care of Cancer Survivors: Nested Randomized Clinical Trial.","authors":"Gunther Meinlschmidt,&nbsp;Astrid Grossert,&nbsp;Cornelia Meffert,&nbsp;Noa Roemmel,&nbsp;Viviane Hess,&nbsp;Christoph Rochlitz,&nbsp;Miklos Pless,&nbsp;Sabina Hunziker,&nbsp;Brigitta Wössmer,&nbsp;Ulfried Geuter,&nbsp;Rainer Schaefert","doi":"10.2196/38515","DOIUrl":"https://doi.org/10.2196/38515","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;Cancer is related to not only physical but also mental suffering. Notably, body image disturbances are highly relevant to cancer-related changes often persisting beyond recovery from cancer. Scalable and low-barrier interventions that can be blended with face-to-face psychotherapy for cancer survivors are highly warranted.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Objective: &lt;/strong&gt;The aim of the study is to investigate whether smartphone-based bodily interventions are more effective to improve the mood of patients with cancer than smartphone-based fairy tale interventions (control intervention).&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;We recruited patients with cancer in 2 Swiss hospitals and conducted daily, fully automated smartphone-based interventions 6 times a week for 5 consecutive weeks, blended with weekly face-to-face group body psychotherapy. We applied 2 types of smartphone-based interventions using a within-subject design, randomly assigning patients daily to either bodily interventions or fairy tales. Each intervention type was presented 3 times a week. For this secondary analysis, 3-level mixed models were estimated with mood assessed by the 3 Multidimensional Mood Questionnaire subscales for good-bad mood, wakefulness, and calmness as key indicators. In addition, the effects on experience of presence, vitality, and burden assessed with visual analog scales were investigated.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;Based on the data from s=732 interventions performed by 36 participants, good-bad mood improved (β=.27; 95% CI 0.062-0.483), and participants became calmer (β=.98; 95% CI 0.740-1.211) following smartphone-based interventions. Wakefulness did not significantly change from pre- to postsmartphone-based intervention (β=.17; 95% CI -0.081 to 0.412). This was true for both intervention types. There was no interaction effect of intervention type with change in good-bad mood (β=-.01; 95% CI -0.439 to 0.417), calmness (β=.22; 95% CI -0.228 to 0.728), or wakefulness (β=.14; 95% CI -0.354 to 0.644). Experience of presence (β=.34; 95% CI 0.271-0.417) and vitality (β=.35; 95% CI 0.268-0.426) increased from pre- to postsmartphone-based intervention, while experience of burden decreased (β=-0.40; 95% CI -0.481 to 0.311). Again, these effects were present for both intervention types. There were no significant interaction effects of intervention type with pre- to postintervention changes in experience of presence (β=.14; 95% CI -0.104 to 0.384), experience of vitality (β=.06; 95% CI -0.152 to 0.265), and experience of burden (β=-.16; 95% CI -0.358 to 0.017).&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusions: &lt;/strong&gt;Our results suggest that both smartphone-based audio-guided bodily interventions and fairy tales have the potential to improve the mood of cancer survivors.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Trial registration: &lt;/strong&gt;ClinicalTrials.gov NCT03707548; https://clinicaltrials.gov/study/NCT03707548.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;International registered report identifier (irrid): &lt;/strong&gt;RR2-10.","PeriodicalId":45538,"journal":{"name":"JMIR Cancer","volume":"9 ","pages":"e38515"},"PeriodicalIF":2.8,"publicationDate":"2023-08-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10495843/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10241813","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Tailoring a Text Messaging and Fotonovela Program to Increase Patient Engagement in Colorectal Cancer Screening in a Large Urban Community Clinic Population: Quality Improvement Project. 定制短信和Fotonovela项目,以提高大型城市社区诊所人群中结肠直肠癌筛查患者的参与度:质量改进项目。
IF 2.8 Q2 ONCOLOGY Pub Date : 2023-08-10 DOI: 10.2196/43024
Monica Guo, Rena Brar Prayaga, Carly E Levitz, Elena S Kuo, Esmeralda Ruiz, Evelyn Torres-Ozadali, Anne Escaron
<p><strong>Background: </strong>Appropriate annual screenings for colorectal cancer (CRC) are an essential preventive measure for the second-leading cause of cancer-related death in the United States. Studies have shown that CRC screening rates are influenced by various social determinants of health (SDOH) factors, including race, ethnicity, and geography. According to 2018 national data, participation in screening is lowest among Hispanic or Latinx individuals (56.1%). At an urban Federally Qualified Health Center, a quality improvement project was conducted to evaluate a texting program with a motivational fotonovela-a short narrative comic. Fotonovelas have previously been used in programs to improve knowledge of cervical cancer and human papillomavirus, vaccinations, and treatments for depression.</p><p><strong>Objective: </strong>This study aimed to encourage compliance with fecal immunochemical test (FIT) screening. Patient engagement involved a texting program with fotonovelas informed by behavior change techniques. This study sought to understand the qualitative characteristics of patient motivation, intention, and barriers to completing their screening.</p><p><strong>Methods: </strong>A total of 5241 English-speaking or Spanish-speaking Federally Qualified Health Center patients aged 50 to 75 years were randomized to either intervention (a 4-week tailored 2-way texting program with a fotonovela comic) or usual care (an SMS text message reminder and patient navigator phone call). The texting vendor used a proprietary algorithm to categorize patients in the intervention group into SDOH bands based on their home addresses (high impact=high social needs and low impact=low social needs). Over 4 weeks, patients were texted questions about receiving and returning their FIT, what barriers they may be experiencing, and their thoughts about the fotonovela.</p><p><strong>Results: </strong>The SDOH index analysis showed that most of the patient population was in the SDOH band categories of high impact (555/2597, 21.37%) and very high impact (1416/2597, 54.52%). Patients sent 1969 total responses to the texting system. Thematic analysis identified 3 major themes in these responses: messages as a reminder, where patients reported that they were motivated to return the FIT and had already done so or would do so as soon as possible; increasing patients' understanding of screening importance, where patients expressed an increased knowledge about the purpose and importance of the FIT; and expressing barriers, where patients shared reasons for not completing the FIT.</p><p><strong>Conclusions: </strong>The texting program and fotonovela engaged a subset of patients in each SDOH band, including the high and very high impact bands. Creating culturally tailored messages can encourage patient engagement for accepting the content of the messaging, confirming intentions to complete their FIT, and sharing insights about barriers to behavior change. To better supp
背景:在美国,结直肠癌(CRC)是癌症相关死亡的第二大原因,适当的年度筛查是必不可少的预防措施。研究表明,结直肠癌筛查率受到各种社会健康决定因素(SDOH)因素的影响,包括种族、民族和地理。根据2018年的国家数据,西班牙裔或拉丁裔人的筛查参与率最低(56.1%)。在一个城市联邦合格医疗中心,进行了一项质量改进项目,以评估一个带有励志漫画的短信项目。Fotonovelas之前被用于提高对宫颈癌和人类乳头瘤病毒的认识,疫苗接种和抑郁症治疗的项目。目的:本研究旨在促进粪便免疫化学试验(FIT)筛查的依从性。病人参与了一个短信项目,通过行为改变技术通知了fotonovelas。本研究旨在了解患者动机、意图和完成筛查的障碍的定性特征。方法:共有5241名年龄在50至75岁的说英语或西班牙语的联邦合格健康中心患者被随机分配到干预组(为期4周的定制双向短信计划和fotonovela漫画)或常规护理组(短信提醒和患者导航电话)。短信供应商使用专有算法根据家庭地址将干预组患者分为SDOH频段(高影响=高社会需求,低影响=低社会需求)。在4周的时间里,患者收到了关于接收和返回FIT的短信,他们可能遇到的障碍,以及他们对fotonovela的想法。结果:SDOH指数分析显示,大部分患者处于高影响(555/2597,21.37%)和甚高影响(1416/2597,54.52%)SDOH频带类别。患者总共向短信系统发送了1969条回复。专题分析确定了这些回应中的3个主要主题:作为提醒的信息,患者报告他们有动力归还FIT,并且已经这样做了或将尽快这样做;增加患者对筛查重要性的理解,患者对FIT的目的和重要性的了解有所增加;以及表达障碍,患者分享不完成FIT的原因。结论:短信计划和fotonovela对每个SDOH波段的患者都有作用,包括高和非常高的冲击波段。创建适合文化的信息可以鼓励患者接受信息的内容,确认完成FIT的意图,并分享对行为改变障碍的见解。为了更好地支持所有接受结直肠癌筛查的患者的连续治疗,重要的是继续制定和评估策略,让那些没有寄回FIT的患者参与进来。
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引用次数: 1
Perspectives and Experiences of Patients With Thyroid Cancer at a Global Level: Retrospective Descriptive Study of Twitter Data. 全球水平甲状腺癌患者的观点和经验:Twitter数据的回顾性描述性研究。
IF 2.8 Q2 ONCOLOGY Pub Date : 2023-08-02 DOI: 10.2196/48786
Sununtha Meksawasdichai, Tassanee Lerksuthirat, Boonsong Ongphiphadhanakul, Chutintorn Sriphrapradang

Background: Twitter has become a popular platform for individuals to broadcast their daily experiences and opinions on a wide range of topics and emotions. Tweets from patients with cancer could offer insights into their needs. However, limited research has been conducted using Twitter data to understand the needs of patients with cancer despite the substantial amount of health-related data posted on the platform daily.

Objective: This study aimed to uncover the potential of using Twitter data to understand the perspectives and experiences of patients with thyroid cancer at a global level.

Methods:  This retrospective descriptive study collected tweets relevant to thyroid cancer in 2020 using the Twitter scraping tool. Only English-language tweets were included, and data preprocessing was performed to remove irrelevant tweets, duplicates, and retweets. Both tweets and Twitter users were manually classified into various groups based on the content. Each tweet underwent sentiment analysis and was classified as either positive, neutral, or negative.

Results: A total of 13,135 tweets related to thyroid cancer were analyzed. The authors of the tweets included patients with thyroid cancer (3225 tweets, 24.6%), patient's families and friends (2449 tweets, 18.6%), medical journals and media (1733 tweets, 13.2%), health care professionals (1093 tweets, 8.3%), and medical health organizations (940 tweets, 7.2%), respectively. The most discussed topics related to living with cancer (3650 tweets, 27.8%), treatment (2891 tweets, 22%), diagnosis (1613 tweets, 12.3%), risk factors and prevention (1137 tweets, 8.7%), and research (953 tweets, 7.3%). An average of 36 tweets pertaining to thyroid cancer were posted daily. Notably, the release of a film addressing thyroid cancer and the public disclosure of a news reporter's personal diagnosis of thyroid cancer resulted in a significant escalation in the volume of tweets. From the sentiment analysis, 53.5% (7025/13,135) of tweets were classified as neutral statements and 32.7% (4299/13,135) of tweets expressed negative emotions. Tweets from patients with thyroid cancer had the highest proportion of negative emotion (1385/3225 tweets, 42.9%), particularly when discussing symptoms.

Conclusions:  This study provides new insights on using Twitter data as a valuable data source to understand the experiences of patients with thyroid cancer. Twitter may provide an opportunity to improve patient and physician engagement or apply as a potential research data source.

背景:Twitter已经成为一个受欢迎的平台,人们可以在这里就各种话题和情绪发布自己的日常经历和观点。癌症患者的推文可以让我们了解他们的需求。然而,利用Twitter数据来了解癌症患者需求的研究有限,尽管该平台每天都会发布大量与健康相关的数据。目的:本研究旨在揭示利用Twitter数据在全球范围内了解甲状腺癌患者的观点和经历的潜力。方法:本回顾性描述性研究使用推特抓取工具收集2020年与甲状腺癌相关的推特。只包括英语tweet,并执行数据预处理以删除无关tweet、重复tweet和转发tweet。根据内容,推文和Twitter用户都被手动分为不同的组。每条推文都经过情绪分析,并被分类为积极、中性或消极。结果:共分析了13135条与甲状腺癌相关的推文。这些推文的作者分别包括甲状腺癌患者(3225条推文,24.6%)、患者家属和朋友(2449条推文,18.6%)、医学期刊和媒体(1733条推文,13.2%)、卫生保健专业人员(1093条推文,8.3%)和医疗卫生组织(940条推文,7.2%)。讨论最多的话题与癌症生活(3650条推文,27.8%)、治疗(2891条推文,22%)、诊断(1613条推文,12.3%)、风险因素和预防(1137条推文,8.7%)以及研究(953条推文,7.3%)有关。平均每天发布36条与甲状腺癌有关的推文。值得注意的是,一部关于甲状腺癌的电影的上映,以及一名新闻记者个人甲状腺癌诊断的公开披露,导致推文的数量大幅上升。从情绪分析来看,53.5%(7025/ 13135)的推文被归类为中性言论,32.7%(4299/ 13135)的推文表达了负面情绪。甲状腺癌患者的推文中负面情绪的比例最高(1385/3225条推文,42.9%),尤其是在讨论症状时。结论:本研究为利用Twitter数据作为有价值的数据来源来了解甲状腺癌患者的经历提供了新的见解。Twitter可以提供一个机会来提高病人和医生的参与度,或者作为一个潜在的研究数据源。
{"title":"Perspectives and Experiences of Patients With Thyroid Cancer at a Global Level: Retrospective Descriptive Study of Twitter Data.","authors":"Sununtha Meksawasdichai,&nbsp;Tassanee Lerksuthirat,&nbsp;Boonsong Ongphiphadhanakul,&nbsp;Chutintorn Sriphrapradang","doi":"10.2196/48786","DOIUrl":"https://doi.org/10.2196/48786","url":null,"abstract":"<p><strong>Background: </strong>Twitter has become a popular platform for individuals to broadcast their daily experiences and opinions on a wide range of topics and emotions. Tweets from patients with cancer could offer insights into their needs. However, limited research has been conducted using Twitter data to understand the needs of patients with cancer despite the substantial amount of health-related data posted on the platform daily.</p><p><strong>Objective: </strong>This study aimed to uncover the potential of using Twitter data to understand the perspectives and experiences of patients with thyroid cancer at a global level.</p><p><strong>Methods: </strong> This retrospective descriptive study collected tweets relevant to thyroid cancer in 2020 using the Twitter scraping tool. Only English-language tweets were included, and data preprocessing was performed to remove irrelevant tweets, duplicates, and retweets. Both tweets and Twitter users were manually classified into various groups based on the content. Each tweet underwent sentiment analysis and was classified as either positive, neutral, or negative.</p><p><strong>Results: </strong>A total of 13,135 tweets related to thyroid cancer were analyzed. The authors of the tweets included patients with thyroid cancer (3225 tweets, 24.6%), patient's families and friends (2449 tweets, 18.6%), medical journals and media (1733 tweets, 13.2%), health care professionals (1093 tweets, 8.3%), and medical health organizations (940 tweets, 7.2%), respectively. The most discussed topics related to living with cancer (3650 tweets, 27.8%), treatment (2891 tweets, 22%), diagnosis (1613 tweets, 12.3%), risk factors and prevention (1137 tweets, 8.7%), and research (953 tweets, 7.3%). An average of 36 tweets pertaining to thyroid cancer were posted daily. Notably, the release of a film addressing thyroid cancer and the public disclosure of a news reporter's personal diagnosis of thyroid cancer resulted in a significant escalation in the volume of tweets. From the sentiment analysis, 53.5% (7025/13,135) of tweets were classified as neutral statements and 32.7% (4299/13,135) of tweets expressed negative emotions. Tweets from patients with thyroid cancer had the highest proportion of negative emotion (1385/3225 tweets, 42.9%), particularly when discussing symptoms.</p><p><strong>Conclusions: </strong> This study provides new insights on using Twitter data as a valuable data source to understand the experiences of patients with thyroid cancer. Twitter may provide an opportunity to improve patient and physician engagement or apply as a potential research data source.</p>","PeriodicalId":45538,"journal":{"name":"JMIR Cancer","volume":"9 ","pages":"e48786"},"PeriodicalIF":2.8,"publicationDate":"2023-08-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10433024/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10025253","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Exposure and Reactions to Cancer Treatment Misinformation and Advice: Survey Study. 癌症治疗误导和建议的接触与反应:调查研究。
IF 3.3 Q2 ONCOLOGY Pub Date : 2023-07-28 DOI: 10.2196/43749
Allison J Lazard, Sydney Nicolla, Rhyan N Vereen, Shanetta Pendleton, Marjory Charlot, Hung-Jui Tan, Dominic DiFranzo, Marlyn Pulido, Nabarun Dasgupta
<p><strong>Background: </strong>Cancer treatment misinformation, or false claims about alternative cures, often spreads faster and farther than true information on social media. Cancer treatment misinformation can harm the psychosocial and physical health of individuals with cancer and their cancer care networks by causing distress and encouraging people to abandon support, potentially leading to deviations from evidence-based care. There is a pressing need to understand how cancer treatment misinformation is shared and uncover ways to reduce misinformation.</p><p><strong>Objective: </strong>We aimed to better understand exposure and reactions to cancer treatment misinformation, including the willingness of study participants to prosocially intervene and their intentions to share Instagram posts with cancer treatment misinformation.</p><p><strong>Methods: </strong>We conducted a survey on cancer treatment misinformation among US adults in December 2021. Participants reported their exposure and reactions to cancer treatment misinformation generally (saw or heard, source, type of advice, and curiosity) and specifically on social media (platform, believability). Participants were then randomly assigned to view 1 of 3 cancer treatment misinformation posts or an information post and asked to report their willingness to prosocially intervene and their intentions to share.</p><p><strong>Results: </strong>Among US adult participants (N=603; mean age 46, SD 18.83 years), including those with cancer and cancer caregivers, almost 1 in 4 (142/603, 23.5%) received advice about alternative ways to treat or cure cancer. Advice was primarily shared through family (39.4%) and friends (37.3%) for digestive (30.3%) and natural (14.1%) alternative cancer treatments, which generated curiosity among most recipients (106/142, 74.6%). More than half of participants (337/603, 55.9%) saw any cancer treatment misinformation on social media, with significantly higher exposure for those with cancer (53/109, 70.6%) than for those without cancer (89/494, 52.6%; P<.001). Participants saw cancer misinformation on Facebook (39.8%), YouTube (27%), Instagram (22.1%), and TikTok (14.1%), among other platforms. Participants (429/603, 71.1%) thought cancer treatment misinformation was true, at least sometimes, on social media. More than half (357/603, 59.2%) were likely to share any cancer misinformation posts shown. Many participants (412/603, 68.3%) were willing to prosocially intervene for any cancer misinformation posts, including flagging the cancer treatment misinformation posts as false (49.7%-51.4%) or reporting them to the platform (48.1%-51.4%). Among the participants, individuals with cancer and those who identified as Black or Hispanic reported greater willingness to intervene to reduce cancer misinformation but also higher intentions to share misinformation.</p><p><strong>Conclusions: </strong>Cancer treatment misinformation reaches US adults through social media, includi
背景:在社交媒体上,癌症治疗误导信息或有关替代疗法的虚假说法往往比真实信息传播得更快更远。癌症治疗误导信息会对癌症患者及其癌症护理网络的社会心理和身体健康造成伤害,因为这些误导信息会给人们带来困扰,鼓励人们放弃支持,从而可能导致偏离循证护理。我们迫切需要了解癌症治疗误导信息是如何被分享的,并找出减少误导信息的方法:我们旨在更好地了解人们对癌症治疗误导信息的接触和反应,包括研究参与者进行亲社会干预的意愿及其分享含有癌症治疗误导信息的 Instagram 帖子的意图:我们于 2021 年 12 月对美国成年人进行了一项关于癌症治疗误导信息的调查。参与者报告了他们对癌症治疗误导信息的一般接触和反应(看到或听到、来源、建议类型和好奇心),以及在社交媒体上的具体接触和反应(平台、可信度)。然后,参与者被随机分配浏览 3 个癌症治疗误导信息帖子中的 1 个或一个信息帖子,并被要求报告他们进行亲社会干预的意愿和分享的意愿:在美国成年人参与者(人数=603;平均年龄 46 岁,标准差 18.83 岁)中,包括癌症患者和癌症护理者,几乎每 4 人中就有 1 人(142/603,23.5%)收到过关于治疗或治愈癌症的替代方法的建议。建议主要是通过家人(39.4%)和朋友(37.3%)分享的,涉及消化道疗法(30.3%)和自然疗法(14.1%),这引起了大多数接受者(106/142,74.6%)的好奇。一半以上的参与者(337/603,55.9%)在社交媒体上看到过任何癌症治疗误导信息,其中癌症患者(53/109,70.6%)的接触率明显高于非癌症患者(89/494,52.6%;PConclusions:美国成年人通过社交媒体,包括广泛使用的支持平台,接触到癌症治疗的错误信息。许多人认为社交媒体上关于癌症替代治疗的帖子至少在某些时候是真实的。美国成年人(包括癌症患者和易感人群成员)愿意进行亲社会干预,如果能配合帮助个人辨别虚假说法的策略,就能发起必要的社区行动,减少癌症治疗误导。
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引用次数: 0
Identification of the Needs and Preferences of Patients With Cancer for the Development of a Clinic App: Qualitative Study. 识别癌症患者的需求和偏好,开发临床应用程序:定性研究。
IF 2.8 Q2 ONCOLOGY Pub Date : 2023-07-27 DOI: 10.2196/40891
Joachim Weis, Lucy Raphaela Wolf, Melanie Boerries, Daniela Kassahn, Martin Boeker, Carolin Dresch

Background: Mobile health (mHealth) tools were developed during the past decades and are increasingly used by patients in cancer care too. Scientific research in the development of mHealth services is required in order to meet the various needs of patients and test usability.

Objective: The aim of this study is to assess patients' needs, preferences, and usability of an app (My University Clinic [MUC] app) developed by the Comprehensive Cancer Center Freiburg (CCCF) Germany.

Methods: Based on a qualitative cross-sectional approach, we conducted semistructured interviews with patients with cancer, addressing their needs, preferences, and usability of the designed MUC app. Patients treated by the CCCF were recruited based on a purposive sampling technique focusing on age, sex, cancer diagnoses, and treatment setting (inpatient, outpatient). Data analysis followed the qualitative content analysis according to Kuckartz and was performed using computer-assisted software (MAXQDA).

Results: For the interviews, 17 patients with cancer were selected, covering a broad range of sampling parameters. The results showed that patients expect benefits in terms of improved information about the disease and communication with the clinic staff. Demands for additional features were identified (eg, a list of contact persons and medication management). The most important concerns referred to data security and the potential restriction of personal contacts with health care professionals of the clinical departments of the CCCF. In addition, some features for improving the design of the MUC app with respect to usability or for inclusion of interacting tools were suggested by the patients.

Conclusions: The results of this qualitative study were discussed within the multidisciplinary team and the MUC app providers. Patients' perspectives and needs will be included in further development of the MUC app. There will be a second study phase in which patients will receive a test version of the MUC app and will be asked about their experiences with it.

Trial registration: Deutsches Register Klinischer Studien DRKS00022162; https://drks.de/search/de/trial/DRKS00022162.

背景:移动医疗(mHealth)工具是在过去几十年中发展起来的,并且越来越多地被癌症患者用于治疗。为了满足患者的各种需求和测试可用性,需要对移动医疗服务的发展进行科学研究。目的:本研究的目的是评估患者对德国弗莱堡综合癌症中心(CCCF)开发的一款应用程序(My University Clinic [MUC] app)的需求、偏好和可用性。方法:基于定性横断面方法,我们对癌症患者进行了半结构化访谈,了解他们的需求、偏好和设计的MUC应用程序的可用性。CCCF治疗的患者是基于有目的抽样技术招募的,重点是年龄、性别、癌症诊断和治疗环境(住院、门诊)。数据分析遵循Kuckartz的定性内容分析,采用计算机辅助软件(MAXQDA)进行。结果:访谈选取了17例癌症患者,采样参数范围广。结果表明,患者期望在改善疾病信息和与诊所工作人员沟通方面获益。确定了对附加功能的需求(例如,联系人列表和药物管理)。最重要的问题是数据安全和可能限制与CCCF临床部门的卫生保健专业人员的个人接触。此外,患者还提出了一些改进MUC应用程序设计的功能,包括可用性或包含交互工具。结论:本定性研究的结果在多学科团队和MUC应用程序提供商中进行了讨论。患者的观点和需求将被纳入MUC应用程序的进一步开发。在第二阶段的研究中,患者将收到MUC应用程序的测试版本,并将被问及他们的使用体验。试验注册:Deutsches Register Klinischer studen DRKS00022162;https://drks.de/search/de/trial/DRKS00022162。
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引用次数: 0
A Web-Based Cancer Self-Management Program (I-Can Manage) Targeting Treatment Toxicities and Health Behaviors: Human-Centered Co-design Approach and Cognitive Think-Aloud Usability Testing. 以治疗毒性和健康行为为目标的基于网络的癌症自我管理程序(I-Can Manage):以人为中心的协同设计方法和认知思维可用性测试。
IF 2.8 Q2 ONCOLOGY Pub Date : 2023-07-21 DOI: 10.2196/44914
Doris Howell, Denise Bryant Lukosius, Jonathan Avery, Athina Santaguida, Melanie Powis, Tina Papadakos, Vincenzo Addario, Mike Lovas, Vishal Kukreti, Kristen Haase, Samantha J Mayo, Janet Papadakos, Saeed Moradian, Monika K Krzyzanowska
<p><strong>Background: </strong>Patients with cancer require adequate preparation in self-management of treatment toxicities to reduce morbidity that can be achieved through well-designed digital technologies that are developed in co-design with patients and end users.</p><p><strong>Objective: </strong>We undertook a user-centered co-design process in partnership with patients and other knowledge end users to develop and iteratively test an evidence-based and theoretically informed web-based cancer self-management program (I-Can Manage). The specific study aims addressed in 2 phases were to (1) identify from the perspective of patients with cancer and clinicians the desired content, features, and functionalities for an online self-management education and support (SMES) program to enable patient self-management of treatment toxicities (phase 1); (2) develop the SMES prototype based on human-centered, health literate design principles and co-design processes; and (3) evaluate usability of the I-Can Manage prototype through user-centered testing (phase 2).</p><p><strong>Methods: </strong>We developed the I-Can Manage program using multiperspective data sources and based on humanistic and co-design principles with end users engaged through 5 phases of development. We recruited adult patients with lung, colorectal, and lymphoma cancer receiving systemic treatments from ambulatory clinics in 2 regional cancer programs for the qualitative inquiry phase. The design of the program was informed by data from qualitative interviews and focus groups, persona and journey mapping, theoretical underpinnings of social cognitive learning theory, and formalized usability testing using a cognitive think-aloud process and user satisfaction survey. A co-design team comprising key stakeholders (human design experts, patients/caregiver, clinicians, knowledge end users, and e-learning and digital design experts) was involved in the developmental process. We used a cognitive think-aloud process to test usability and participants completed the Post-Study System Usability Questionnaire (PSSUQ).</p><p><strong>Results: </strong>In the initial qualitative inquiry phase, 16 patients participated in interviews and 19 clinicians participated in interviews or focus groups and 12 key stakeholders participated in a persona journey mapping workshop to inform development of the program prototype. The I-Can Manage program integrates evidence-based information and strategies for the self-management of treatment toxicities and health-promoting behaviors in 6 e-learning modules (lay termed "chapters"), starting with an orientation to self-management. Behavioral exercises, patient written and video stories, downloadable learning resources, and online completion of goals and action plans were integrated across chapters. Patient participants (n=5) with different cancers, gender, and age worked through the program in the human factors laboratory using a cognitive think-aloud process and all
背景:癌症患者需要在治疗毒性的自我管理方面做好充分的准备,以减少发病率,这可以通过与患者和最终用户共同设计开发的精心设计的数字技术来实现。目的:我们与患者和其他知识终端用户合作,采用以用户为中心的协同设计过程,开发并迭代测试基于证据和理论信息的基于网络的癌症自我管理程序(I-Can Manage)。具体的研究目标分为两个阶段:(1)从癌症患者和临床医生的角度确定在线自我管理教育和支持(sme)计划所需的内容、特征和功能,使患者能够自我管理治疗毒性(第一阶段);(2)基于以人为本、健康素养设计原则和协同设计流程开发中小企业原型;(3)通过以用户为中心的测试(第二阶段)评估I-Can Manage原型的可用性。方法:我们使用多角度数据源,基于人性化和协同设计原则,与最终用户一起开发了I-Can Manage程序,共开发了5个阶段。在定性调查阶段,我们招募了在2个地区癌症项目的门诊接受系统治疗的肺癌、结直肠癌和淋巴瘤成年患者。该项目的设计参考了定性访谈和焦点小组、人物角色和旅程地图、社会认知学习理论的理论基础,以及使用认知有声思考过程和用户满意度调查的形式化可用性测试。一个由关键利益相关者(人类设计专家、患者/护理人员、临床医生、知识终端用户以及电子学习和数字设计专家)组成的共同设计团队参与了开发过程。我们使用认知思考过程来测试可用性,参与者完成了研究后系统可用性问卷(PSSUQ)。结果:在最初的定性调查阶段,16名患者参加了访谈,19名临床医生参加了访谈或焦点小组,12名关键利益相关者参加了人物旅程绘图研讨会,为项目原型的开发提供信息。I-Can Manage项目在6个电子学习模块(一般称为“章节”)中整合了基于证据的信息和策略,用于治疗毒性和促进健康行为的自我管理,从自我管理的方向开始。行为练习,耐心的书面和视频故事,可下载的学习资源,以及在线完成目标和行动计划被整合到各个章节中。不同癌症、性别和年龄的患者参与者(n=5)在人为因素实验室中使用认知思考过程完成了该计划,所有关键利益相关者都审查了计划的每一章并批准了修订。认知有声思考过程(n=5)后完成的PSSUQ(平均总分:3.75)结果表明患者对I-Can Manage的可用性满意。结论:I-Can Manage项目具有激活患者自我管理癌症和治疗毒性的潜力,但需要在更大的随机对照试验中进行测试。
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引用次数: 1
Using Health-Related Social Media to Understand the Experiences of Adults With Lung Cancer in the Era of Immuno-Oncology and Targeted Therapies: Observational Study. 利用与健康相关的社交媒体了解免疫肿瘤学和靶向治疗时代成年肺癌患者的经历:观察性研究
IF 2.8 Q2 ONCOLOGY Pub Date : 2023-07-12 DOI: 10.2196/45707
Alison Booth, Stephanie Manson, Sonia Halhol, Evie Merinopoulou, Mireia Raluy-Callado, Asha Hareendran, Stefanie Knoll

Background: The treatment of non-small cell lung cancer (NSCLC) has evolved dramatically with the approval of immuno-oncology (IO) and targeted therapies (TTs). Insights on the patient experience with these therapies and their impacts are lacking. Health-related social media has been increasingly used by patients to share their disease and treatment experiences, thus representing a valuable source of real-world data to understand the patient's voice and uncover potential unmet needs.

Objective: This study aimed to describe the experiences of patients with NSCLC as reported in discussions posted on lung cancer-specific social media with respect to their disease symptoms and associated impacts.

Methods: Publicly available posts (2010-2019) were extracted from selected lung cancer- or NSCLC-specific websites. Social media users (patients and caregivers posting on these websites) were stratified by metastatic- and adjuvant-eligible subgroups and treatment received using natural language processing (NLP) and machine learning methods. Automated identification of symptoms was conducted using NLP. Qualitative data analysis (QDA) was conducted on random samples of posts mentioning pain-related, fatigue-related, respiratory-related, or infection-related symptoms to capture the patient experience with these and associated impacts.

Results: Overall, 1724 users (50,390 posts) and 574 users (4531 posts) were included in the metastatic group and adjuvant group, respectively. Among users in the metastatic group, pain, discomfort, and fatigue were the most commonly mentioned symptoms (49.7% and 39.6%, respectively), and in the QDA (258 posts from 134 users), the most frequent impacts related to physical impairments, sleep, and eating habits. Among users in the adjuvant group, pain, discomfort, and respiratory symptoms were the most commonly mentioned (44.8% and 23.9%, respectively), and impacts identified in the QDA (154 posts from 92 users) were mostly related to physical functioning.

Conclusions: Findings from this exploratory observational analysis of social media among patients and caregivers informed the lived experience of NSCLC in the era of novel therapies, shedding light on most reported symptoms and their impacts. These findings can be used to inform future research on NSCLC treatment development and patient management.

背景:随着免疫肿瘤学(IO)和靶向治疗(tt)的批准,非小细胞肺癌(NSCLC)的治疗发生了巨大的变化。缺乏对这些疗法的患者体验及其影响的见解。患者越来越多地使用与健康相关的社交媒体来分享他们的疾病和治疗经验,从而成为了解患者声音和发现潜在未满足需求的宝贵现实数据来源。目的:本研究旨在描述在肺癌特异性社交媒体上发布的讨论中报告的非小细胞肺癌患者的疾病症状和相关影响。方法:从选定的肺癌或非小细胞肺癌特异性网站上提取公开可用的帖子(2010-2019)。社交媒体用户(在这些网站上发帖的患者和护理人员)按转移性和佐剂合格亚组进行分层,并使用自然语言处理(NLP)和机器学习方法进行治疗。使用NLP对症状进行自动识别。对提及疼痛相关、疲劳相关、呼吸相关或感染相关症状的帖子的随机样本进行定性数据分析(QDA),以捕捉患者对这些和相关影响的体验。结果:总体而言,转移组和辅助组分别包括1724名用户(50390个帖子)和574名用户(4531个帖子)。在转移性组的用户中,疼痛、不适和疲劳是最常提到的症状(分别为49.7%和39.6%),而在QDA(来自134名用户的258个帖子)中,最常见的影响与身体缺陷、睡眠和饮食习惯有关。在辅助组的用户中,疼痛、不适和呼吸症状是最常被提及的(分别为44.8%和23.9%),QDA中确定的影响(来自92名用户的154篇帖子)主要与身体功能有关。结论:这项对患者和护理人员的社交媒体的探索性观察分析的结果揭示了新疗法时代非小细胞肺癌的生活经历,揭示了大多数报告的症状及其影响。这些发现可用于为未来的NSCLC治疗发展和患者管理研究提供信息。
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引用次数: 0
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