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Preliminary testing of “roadmap to parenthood” decision aid and planning tool for family building after cancer: Results of a single‐arm pilot study 初步测试 "为人父母路线图 "决策辅助工具和癌症后家庭建设规划工具:单臂试点研究结果
IF 3.6 2区 医学 Q1 Psychology Pub Date : 2024-04-17 DOI: 10.1002/pon.6323
Catherine Benedict, Jennifer S. Ford, Lidia Schapira, Alexandra Davis, Pamela Simon, David Spiegel, Michael Diefenbach
ObjectiveMany young adult female cancer survivors need to use reproductive medicine, surrogacy, or adoption to have a child. This study pilot tested Roadmap to Parenthood, a web‐based, self‐guided decision aid and planning tool for family building after cancer (disease agnostic).MethodsA single‐arm pilot study tested feasibility, acceptability, and obtained effect size estimates of the Roadmap tool. Participants, recruited via hospital‐based and social media strategies, completed a baseline survey (T1), accessed the Roadmap tool (website), then completed surveys at one‐ and 3‐months (T2 and T3, respectively). Feasibility and acceptability were evaluated with rates of eligibility, enrollment, and survey completion, and feedback. Pairwise t‐tests and repeated measures ANOVA evaluated usage effects. Effect size estimates were calculated.ResultsParticipants (N = 98) averaged 31 years old (SD = 5.61); 71% were nulliparous. Enrollment rate was 73%, T1‐T2 completion rate was 80%, and 93% accessed the website. From T1‐T2, participants reported improvements in decisional conflict (p < 0.001; Cohen's d = 0.85), unmet information needs (p < 0.001; Cohen's d = 0.70), self‐efficacy (p = 0.003; Cohen's d = 0.40), and self‐efficacy for managing negative emotions (p = 0.03; Cohen's d = 0.29); effects were sustained at T3. There was no change in reproductive distress (p = 0.22). By T3, 94% reported increased consideration of preparatory actions and 20%–61% completed such actions.ConclusionsThe Roadmap intervention was feasible to conduct, acceptable to users, and led to improvements in key psychosocial outcomes. Future directions will test intervention efficacy in a randomized controlled trial with a larger sample and over a longer period. A web‐based tool may help women make decisions about family building after cancer and prepare for potential challenges.
目标许多年轻的成年女性癌症幸存者需要借助生殖医学、代孕或收养来生育孩子。本研究对 "为人父母路线图 "进行了试点测试。"为人父母路线图 "是一种基于网络的、自我指导的决策辅助工具,也是癌症后家庭建设的规划工具(与疾病无关)。方法一项单臂试点研究测试了 "为人父母路线图 "工具的可行性、可接受性,并获得了效应大小估计值。通过医院和社交媒体策略招募的参与者完成了基线调查(T1),访问了路线图工具(网站),然后分别在一个月和三个月后(T2 和 T3)完成了调查。通过资格审查率、注册率、调查完成率和反馈来评估可行性和可接受性。配对 t 检验和重复测量方差分析评估了使用效果。结果参与者(N = 98)的平均年龄为 31 岁(SD = 5.61);71% 为未婚先孕。注册率为 73%,T1-T2 完成率为 80%,93% 访问了网站。从 T1 到 T2,参与者在决策冲突(p < 0.001; Cohen's d = 0.85)、未满足的信息需求(p < 0.001; Cohen's d = 0.70)、自我效能感(p = 0.003; Cohen's d = 0.40)和管理负面情绪的自我效能感(p = 0.03; Cohen's d = 0.29)方面都有所改善;效果在 T3 得到维持。生殖困扰没有变化(p = 0.22)。到了第三阶段,94% 的人表示更多地考虑了准备行动,20%-61% 的人完成了准备行动。未来的发展方向是在更大样本和更长时间的随机对照试验中检验干预效果。基于网络的工具可以帮助妇女在癌症后做出有关家庭建设的决定,并为潜在的挑战做好准备。
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引用次数: 0
The personal impact of living with a myeloproliferative neoplasm 骨髓增生性肿瘤对个人生活的影响
IF 3.6 2区 医学 Q1 Psychology 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
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.
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。
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引用次数: 0
Development and validation of the CARE‐FCR: A caregiver‐specific measure of fear of cancer recurrence and progression 开发并验证 CARE-FCR:一种针对护理人员的癌症复发和恶化恐惧测量方法
IF 3.6 2区 医学 Q1 Psychology Pub Date : 2024-04-09 DOI: 10.1002/pon.6341
Kyra Webb, Louise Sharpe, Hayley Russell, Joanne Shaw
ObjectivesFear of cancer recurring or progressing (FCR) is a concern reported by people living with cancer and caregivers alike. Whilst advances in survivor FCR have been made, less is known about caregiver FCR. As a result, measurement of caregiver FCR has relied on instruments developed for survivor populations. Findings from qualitative research indicate caregiver experiences of FCR differ. This study aimed to develop and evaluate the psychometric properties of a caregiver specific measure of FCR (CARE‐FCR).MethodsFour‐hundred and thirty‐eight caregivers (56% female, Mage = 50.53 years, SD = 17.38) completed the online survey including demographic questions, information about care provided, the person they care for, as well as the CARE‐FCR. Convergent validity was assessed using pre‐existing measures of fear of recurrence and progression, depression, anxiety, death anxiety and meta‐cognitions. The extraversion dimension of the Big Five Personality Trait questionnaire was used to assess divergent validity. The survey was completed 2 weeks later to assess test‐retest reliability. Exploratory factor analysis (EFA) was used to determine factor structure, followed by confirmatory factor analysis.ResultsEFA indicated a 3‐factor structure: progression, recurrence, and communication. Evidence for convergent, divergent, and test‐retest reliability was adequate. Internal consistency for the CARE‐FCR was strong, overall Cronbach's α = 0.96 (progression = 0.94, recurrence = 0.92 and communication = 0.78).ConclusionsWe present a theoretically informed and psychometrically robust measure of caregiver FCR. The CARE‐FCR facilitates quantification of caregiver FCR, capturing unique aspects specific to this population.
目标癌症复发或进展恐惧(FCR)是癌症患者和照顾者都关心的问题。虽然在幸存者 FCR 方面取得了进展,但对照顾者的 FCR 却知之甚少。因此,对照顾者 FCR 的测量一直依赖于为幸存者人群开发的工具。定性研究的结果表明,照顾者对 FCR 的体验各不相同。本研究旨在开发和评估护理者 FCR 专门测量工具(CARE-FCR)的心理测量特性。方法438 名护理者(56% 为女性,年龄 = 50.53 岁,SD = 17.38)完成了在线调查,包括人口统计学问题、所提供护理的相关信息、所护理的对象以及 CARE-FCR。通过对复发和进展恐惧、抑郁、焦虑、死亡焦虑和元认知的已有测量进行了聚合效度评估。大五人格特质问卷的外向性维度用于评估发散有效性。调查在两周后完成,以评估重测可靠性。探索性因子分析(EFA)用于确定因子结构,然后进行确认性因子分析。聚合可靠性、发散可靠性和测试-再测可靠性均符合要求。CARE-FCR 的内部一致性很强,总体 Cronbach's α = 0.96(进展 = 0.94,复发 = 0.92,沟通 = 0.78)。CARE-FCR有助于量化照顾者FCR,捕捉到了这一人群特有的方面。
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引用次数: 0
The implementation and mechanisms of advance notification for cancer screening: A scoping review 癌症筛查预先通知的实施和机制:范围审查
IF 3.6 2区 医学 Q1 Psychology Pub Date : 2024-04-08 DOI: 10.1002/pon.6340
Katelyn E. Collins, Larry S. Myers, Belinda C. Goodwin, Alyssa Taglieri‐Sclocchi, Michael J. Ireland
ObjectiveTo describe and synthesise information on the content and delivery of advance notifications (information about cancer screening delivered prior to invitation) used to increase cancer screening participation and to understand the mechanisms that may underlie their effectiveness.MethodsSearches related to advance notification and cancer screening were conducted in six electronic databases (APA PsycINFO, CINAHL, Cochrane Library, Embase, PubMed, Web of Science) and results were screened for eligibility. Study characteristics, features of the advance notifications (cancer type, format, delivery time, and content), and the effect of the notifications on cancer screening participation were extracted. Features were summarised and compared across effective versus ineffective notifications.ResultsThirty‐two articles were included in this review, reporting on 33 unique advance notifications. Of these, 79% were sent via postal mail, 79% were distributed prior to bowel cancer screening, and most were sent 2 weeks before the screening offer. Twenty‐two full versions of the advance notifications were obtained for content analysis. Notifications included information about cancer risk, the benefits of screening, barriers to participation, social endorsement of cancer screening, and what to expect throughout the screening process. Of the 19 notifications whose effect was tested statistically, 68% were found to increase screening (by 0.7%–16%). Effectiveness did not differ according to the format, delivery time, or content within the notification, although some differences in cancer type were observed.ConclusionFuture research should explore the effectiveness of advance notification via alternative formats and for other screening contexts and disentangle the intervention‐ and person‐level factors driving its effect on screening participation.
方法在六个电子数据库(APA PsycINFO、CINAHL、Cochrane Library、Embase、PubMed、Web of Science)中进行了与预先通知和癌症筛查相关的搜索,并对结果进行了资格筛选。提取了研究特征、预先通知的特点(癌症类型、格式、发送时间和内容)以及通知对癌症筛查参与的影响。结果本综述共收录 32 篇文章,报告了 33 个独特的预先通知。其中,79% 是通过邮寄方式发送的,79% 是在肠癌筛查前分发的,大多数是在筛查开始前两周发送的。我们获得了 22 份完整版的预先通知,用于内容分析。通知内容包括癌症风险、筛查的益处、参加筛查的障碍、社会对癌症筛查的认可以及整个筛查过程中的注意事项。在对 19 份通知的效果进行统计检测后发现,68% 的通知能提高筛查率(0.7%-16%)。尽管在癌症类型上存在一些差异,但通知的形式、发送时间或内容在效果上并无不同。结论未来的研究应探索通过其他形式和其他筛查环境提前通知的效果,并将其对筛查参与效果的干预因素和个人因素区分开来。
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引用次数: 0
Is there scope to do better? Clinical communication with adolescents and young adults with cancer—A scoping review 是否还有改进的余地?与青少年癌症患者的临床沟通--范围综述
IF 3.6 2区 医学 Q1 Psychology Pub Date : 2024-04-04 DOI: 10.1002/pon.6317
Deborah J. Critoph, Maria Cable, Jessica Farmer, Helen M. Hatcher, Isla Kuhn, Rachel M. Taylor, Luke A. M. Smith
IntroductionHow to communicate effectively with adolescent and young adults with cancer (AYACs) is a research priority. In a UK‐wide survey of young people with cancer's research priorities, communication was a striking cross‐cutting theme. It is increasingly recognised that AYACs have experiences and communication needs that differ significantly from those of younger children and older adults. The purpose of this review is to explore the features of effective clinical communication with AYACs.MethodsA literature search was undertaken to identify and map the available evidence using a broad scope to get an overview of the pertinent literature, identify knowledge gaps and clarify concepts. The searches yielded 5825 records, generating 4040 unique articles. These were screened and 71 full articles were read by four researchers with disagreements resolved by discussion leaving 29 included articles. Narrative synthesis was undertaken in relation to each of the research questions.ResultsThree key themes were identified: being an adolescent/young adult, supporters, and healthcare professionals (HCPs). AYACs need to feel that HCPs understand their unique perspective. They want to be involved, this changes over time and in different contexts. Supporters are a central tenet, are most often parents and undertake several roles which are not always universally supportive. HCPs enable involvement of AYACs, and this needs to be actively promoted. AYACs preference for their level of involvement requires continual assessment. The three themes are interlinked and exist within the wider scope of the triadic encounter and cancer experience.ConclusionSupporters, most often parents were a key feature across the data and were seemingly paradoxical in nature. Triadic communication, the presence of a third person, is a central tenet of communication with AYACs and we propose a conceptual model to represent the nuances, components, and facets of this complex communication.
导言:如何与青少年癌症患者(AYACs)有效沟通是一项研究重点。在一项全英范围的青少年癌症患者研究重点调查中,沟通是一个引人注目的交叉主题。越来越多的人认识到,青少年癌症患者的经历和沟通需求与年龄较小的儿童和老年人有很大不同。本综述的目的是探讨与亚青儿童进行有效临床沟通的特点。方法 我们进行了文献检索,以广泛的范围确定和绘制现有证据图,从而了解相关文献的概况,找出知识差距并澄清概念。搜索共获得 5825 条记录,产生了 4040 篇独特的文章。四位研究人员对这些文章进行了筛选,并阅读了 71 篇完整文章,通过讨论解决了分歧,最终纳入了 29 篇文章。结果确定了三个关键主题:青少年/年轻成人、支持者和医疗保健专业人员(HCPs)。青少年艾滋病患者需要感觉到医疗保健专业人员了解他们的独特观点。他们希望参与其中,这一点会随着时间的推移和环境的不同而改变。支持者是一个核心要素,他们通常是父母,承担着多种角色,但并不总是普遍支持。保健中心使青少年活动中心能够参与进来,这一点需要积极推动。需要不断评估青少年活动中心对其参与程度的偏好。这三个主题是相互联系的,并存在于更广泛的三方接触和癌症经历中。结论支持者,最常见的是父母,是整个数据的一个关键特征,在本质上似乎是矛盾的。三方沟通,即第三者的存在,是与亚青会沟通的核心原则,我们提出了一个概念模型来表示这种复杂沟通的细微差别、组成部分和各个方面。
{"title":"Is there scope to do better? Clinical communication with adolescents and young adults with cancer—A scoping review","authors":"Deborah J. Critoph, Maria Cable, Jessica Farmer, Helen M. Hatcher, Isla Kuhn, Rachel M. Taylor, Luke A. M. Smith","doi":"10.1002/pon.6317","DOIUrl":"https://doi.org/10.1002/pon.6317","url":null,"abstract":"IntroductionHow to communicate effectively with adolescent and young adults with cancer (AYACs) is a research priority. In a UK‐wide survey of young people with cancer's research priorities, communication was a striking cross‐cutting theme. It is increasingly recognised that AYACs have experiences and communication needs that differ significantly from those of younger children and older adults. The purpose of this review is to explore the features of effective clinical communication with AYACs.MethodsA literature search was undertaken to identify and map the available evidence using a broad scope to get an overview of the pertinent literature, identify knowledge gaps and clarify concepts. The searches yielded 5825 records, generating 4040 unique articles. These were screened and 71 full articles were read by four researchers with disagreements resolved by discussion leaving 29 included articles. Narrative synthesis was undertaken in relation to each of the research questions.ResultsThree key themes were identified: being an adolescent/young adult, supporters, and healthcare professionals (HCPs). AYACs need to feel that HCPs understand their unique perspective. They want to be involved, this changes over time and in different contexts. Supporters are a central tenet, are most often parents and undertake several roles which are not always universally supportive. HCPs enable involvement of AYACs, and this needs to be actively promoted. AYACs preference for their level of involvement requires continual assessment. The three themes are interlinked and exist within the wider scope of the triadic encounter and cancer experience.ConclusionSupporters, most often parents were a key feature across the data and were seemingly paradoxical in nature. Triadic communication, the presence of a third person, is a central tenet of communication with AYACs and we propose a conceptual model to represent the nuances, components, and facets of this complex communication.","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2024-04-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140600848","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
‘Just Google it’—A scoping review of online mental health resources for survivors of breast cancer 只需谷歌"--乳腺癌幸存者在线心理健康资源范围审查
IF 3.6 2区 医学 Q1 Psychology Pub Date : 2024-04-04 DOI: 10.1002/pon.6337
Natalie Tuckey, Matthew Iasiello, Nadia Corsini, Bogda Koczwara, Monique Bareham, Amy Wellalagodage, Hannah R. Wardill
ObjectiveAs the Internet is a ubiquitous resource for information, we aimed to replicate a patient's Google search to identify and assess the quality of online mental health/wellbeing materials available to support women living with or beyond cancer.MethodsA Google search was performed using a key term search strategy including search strings ‘cancer’, ‘wellbeing’, ‘distress’ and ‘resources’ to identify online resources of diverse formats (i.e., factsheet, website, program, course, video, webinar, e‐book, podcast). The quality evaluation scoring tool (QUEST) was used to analyse the quality of health information provided.ResultsThe search strategy resulted in 283 resources, 117 of which met inclusion criteria across four countries: Australia, USA, UK, and Canada. Websites and factsheets were primarily retrieved. The average QUEST score was 10.04 (highest possible score is 28), indicating low quality, with 92.31% of resources lacking references to sources of information.ConclusionsOur data indicated a lack of evidence‐based support resources and engaging information available online for people living with or beyond cancer. The majority of online resources were non‐specific to breast cancer and lacked authorship and attribution.
由于互联网是一种无处不在的信息资源,我们旨在复制患者的谷歌搜索,以确定和评估可用于支持癌症患者或癌症后妇女的在线心理健康/福祉资料的质量。方法使用关键词搜索策略(包括搜索字符串 "癌症"、"福祉"、"困扰 "和 "资源")进行谷歌搜索,以确定各种形式的在线资源(即情况说明书、网站、程序、课程、视频、网络研讨会、电子书和播客)。质量评估评分工具 (QUEST) 用于分析所提供的健康信息的质量:澳大利亚、美国、英国和加拿大。主要检索了网站和概况介绍。平均 QUEST 得分为 10.04 分(最高分 28 分),表明质量较低,92.31% 的资源缺乏信息来源参考。结论我们的数据表明,网上缺乏针对癌症患者或癌症晚期患者的循证支持资源和吸引人的信息。大多数在线资源与乳腺癌无关,而且缺乏作者和出处。
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引用次数: 0
The experiences of men on active surveillance for prostate cancer and their significant others: A qualitative synthesis 积极监测前列腺癌的男性及其重要他人的经历:定性综述
IF 3.6 2区 医学 Q1 Psychology Pub Date : 2024-04-04 DOI: 10.1002/pon.6324
Stephanie Hughes, Hazel Everitt, Beth Stuart, Rebecca Band
BackgroundActive surveillance (AS) for prostate cancer (PCa) is a monitoring pathway for men with low‐grade, slow growing PCa and aims to delay or avoid active treatment by treating only in the case of disease progression. Experiences of this pathway vary but living with an untreated cancer can have a negative psychological impact on both the patient and their significant other (SO). Literature suggests partners are the primary source of support for men on AS, and therefore it is important to consider SO experiences alongside those of the patient. To the best of our knowledge this is the first UK‐based qualitative review looking specifically at experiences of AS for both men with PCa and their SOs.MethodsMEDLINE (Ovid), EMBASE, PsychINFO, CINAHL and Cochrane Library were searched for literature reporting qualitative experiences of AS for PCa for either men on AS or SOs (or both). 2769 records were identified and screened, with 28 meeting the eligibility criteria. Qualitative data were synthesised and included men on AS (n = 428), and SOs (n = 51).ResultsExperiences of the AS pathway vary but reports of uncertainty and anxiety were present in the accounts of both men on AS and SOs. SOs are intertwined throughout every part of the PCa journey, and couples presented as a unit that were on AS together. Both patients and SOs expressed a need for more support, and highly valued peer support. Despite this finding, men expressed a dislike towards ‘support groups’.ConclusionsIncreased recognition in clinical practice of SO involvement in AS is needed. Further research is required to explore the specific types of support that would be most acceptable to this population to address the unmet support needs uncovered in this review.
背景前列腺癌(PCa)的主动监测(AS)是一种针对低级别、生长缓慢的 PCa 男性患者的监测方法,其目的是推迟或避免主动治疗,只在疾病进展时才进行治疗。患者对这种治疗方法的体验各不相同,但癌症未得到治疗会给患者及其重要伴侣(SO)带来负面的心理影响。文献表明,伴侣是男性 AS 患者的主要支持来源,因此在考虑患者经历的同时,也要考虑伴侣的经历。据我们所知,这是英国第一份专门研究男性 PCa 患者及其配偶在 AS 方面经历的定性综述。研究方法:我们检索了MEDLINE (Ovid)、EMBASE、PsychINFO、CINAHL 和 Cochrane Library 中有关报道男性 PCa 患者或配偶(或两者)在 AS 方面经历的定性文献。共找到并筛选出 2769 条记录,其中 28 条符合资格标准。对定性数据进行了综合,包括接受AS治疗的男性(n = 428)和接受SO治疗的男性(n = 51)。结果接受AS治疗的男性和接受SO治疗的男性对AS治疗过程的体验各不相同,但都有不确定性和焦虑的报告。SO在PCa治疗过程中的每一个环节都相互交织,夫妇作为一个整体共同接受AS治疗。患者和辅助人员都表示需要更多的支持,并高度评价同伴支持。尽管有这一发现,但男性对 "支持小组 "表示反感。需要进一步开展研究,探索最能为这一人群所接受的特定类型的支持,以解决本综述中发现的尚未得到满足的支持需求。
{"title":"The experiences of men on active surveillance for prostate cancer and their significant others: A qualitative synthesis","authors":"Stephanie Hughes, Hazel Everitt, Beth Stuart, Rebecca Band","doi":"10.1002/pon.6324","DOIUrl":"https://doi.org/10.1002/pon.6324","url":null,"abstract":"BackgroundActive surveillance (AS) for prostate cancer (PCa) is a monitoring pathway for men with low‐grade, slow growing PCa and aims to delay or avoid active treatment by treating only in the case of disease progression. Experiences of this pathway vary but living with an untreated cancer can have a negative psychological impact on both the patient and their significant other (SO). Literature suggests partners are the primary source of support for men on AS, and therefore it is important to consider SO experiences alongside those of the patient. To the best of our knowledge this is the first UK‐based qualitative review looking specifically at experiences of AS for both men with PCa and their SOs.MethodsMEDLINE (Ovid), EMBASE, PsychINFO, CINAHL and Cochrane Library were searched for literature reporting qualitative experiences of AS for PCa for either men on AS or SOs (or both). 2769 records were identified and screened, with 28 meeting the eligibility criteria. Qualitative data were synthesised and included men on AS (<jats:italic>n</jats:italic> = 428), and SOs (<jats:italic>n</jats:italic> = 51).ResultsExperiences of the AS pathway vary but reports of uncertainty and anxiety were present in the accounts of both men on AS and SOs. SOs are intertwined throughout every part of the PCa journey, and couples presented as a unit that were on AS together. Both patients and SOs expressed a need for more support, and highly valued peer support. Despite this finding, men expressed a dislike towards ‘support groups’.ConclusionsIncreased recognition in clinical practice of SO involvement in AS is needed. Further research is required to explore the specific types of support that would be most acceptable to this population to address the unmet support needs uncovered in this review.","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2024-04-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140600763","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Emotion constructs and outcome measures following false positive breast screening test results: A systematic review of reporting clarity and selection rationale. 乳腺筛查假阳性结果后的情绪构建和结果测量:关于报告清晰度和选择理由的系统性综述。
IF 3.3 2区 医学 Q2 ONCOLOGY Pub Date : 2024-04-01 DOI: 10.1002/pon.6334
Hannah A Long, Sarah Hindmarch, John-Paul Martindale, Joanna M Brooks, Michelle Harvie, David P French

Objective: (i) To systematically identify constructs and outcome measures used to assess the emotional and mood impact of false positive breast screening test results; (ii) to appraise the reporting clarity and rationale for selecting constructs and outcome measures.

Methods: Databases (MEDLINE, CINAHL, PsycINFO) were systematically searched from 1970. Studies using standardised and non-standardised outcome measures to evaluate the emotion or mood impact of false positive breast screening test results were eligible. A 15-item coding scheme was devised to appraise articles on clarity and rationale for selected constructs and measures.

Results: Forty-seven articles were identified. The most investigated constructs were general anxiety and depression and disease-specific anxiety and worry. Twenty-two standardised general outcome questionnaire measures and three standardised disease-specific outcome questionnaire measures were identified. Twenty articles used non-standardised scales/items. Reporting of constructs and outcome measures was generally clear, but rationales for their selection were lacking. Anxiety was typically justified, but justification for depression was almost always absent. Practical and psychometric justification for selecting outcome measures was lacking, and theoretical rationale was absent.

Conclusions: Heterogeneity in constructs and measures, coupled with unclear rationale for these, impedes a thorough understanding of why there are emotional effects of false positive screening test results. This may explain the repeated practice of investigating less relevant outcomes such as depression. There is need to develop a consensual conceptual model of and standardised approach to measuring emotional impact from cancer screening test results, to address heterogeneity and other known issues of interpreting an inconsistent evidence base.

目的:(i) 系统地确定用于评估乳腺筛查假阳性结果对情绪和心境影响的结构和结果测量方法;(ii) 评估报告的清晰度以及选择结构和结果测量方法的合理性:对 1970 年以来的数据库(MEDLINE、CINAHL、PsycINFO)进行了系统检索。使用标准化和非标准化结果测量方法来评估乳腺筛查假阳性结果对情绪或心情影响的研究均符合条件。研究人员设计了一个由 15 个项目组成的编码方案,以评估文章所选结构和测量方法的清晰度和合理性:结果:共鉴定出 47 篇文章。调查最多的概念是一般焦虑和抑郁以及疾病特异性焦虑和担忧。确定了 22 种标准化的一般结果问卷测量方法和 3 种标准化的特定疾病结果问卷测量方法。20篇文章使用了非标准化量表/项目。结构和结果测量的报告一般都比较清晰,但缺乏选择的理由。焦虑通常有合理的解释,但抑郁几乎都没有合理的解释。结果测量指标的选择缺乏实用性和心理测量学依据,也缺乏理论依据:结论:结构和测量方法的异质性,再加上这些测量方法的理由不明确,妨碍了对筛查试验假阳性结果产生情绪影响的原因的透彻理解。这或许可以解释为什么要反复调查抑郁等不太相关的结果。因此,有必要制定一个共识概念模型和标准化方法来衡量癌症筛查检测结果对情绪的影响,以解决异质性和其他已知的解释不一致的证据基础的问题。
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引用次数: 0
Exploring the role of cancer fatalism and engagement with skin cancer genetic information in diverse primary care patients. 探索癌症宿命论的作用以及不同初级保健患者对皮肤癌遗传信息的参与。
IF 3.3 2区 医学 Q2 ONCOLOGY Pub Date : 2024-04-01 DOI: 10.1002/pon.6331
Jennifer L Hay, Yelena Wu, Elizabeth Schofield, Kim Kaphingst, Andrew L Sussman, Delores D Guest, Keith Hunley, Yuelin Li, David Buller, Marianne Berwick

Objective: To broaden the currently limited reach of genomic innovations, research is needed to understand how psychosocial and cultural factors influence reactions to genetic testing in diverse subgroups. Cancer fatalism is important in cancer prevention and deserves theoretical and empirical attention in the context of genomics and behavior change.

Methods: The current study employed data from a randomized controlled trial (N = 593) offering skin cancer genetic testing (using the melanocortin-1 receptor [MC1R] gene) in primary care in Albuquerque, New Mexico, USA. We examined interrelations of cancer fatalism with demographics, general health beliefs, perceived risk, perceived control, sun protection and skin screening behaviors and cancer worry in the skin cancer context stratified across Hispanic versus non-Hispanic ethnicity, and examined cancer fatalism as a moderator of intervention effects on study primary outcomes, including 3-month sun protection, cancer worry and perceived risk.

Results: Cancer fatalism was significantly related to the perception of control over skin cancer risk behaviors (ps ≤ 0.01) and demographics (ethnicity, education, health literacy; ps < 0.05), but not consistently related to general health beliefs or risk perception. Cancer fatalism did not moderate intervention effects on primary outcomes, except those with higher cancer fatalism randomized to intervention had higher levels of 3-month cancer worry (p = 0.019).

Conclusions: These findings will guide future work considering the role of cancer fatalism in use of genomic technologies in the general population. This work anticipates strategies required to address cancer fatalism as translational genomics becomes more commonly available to diverse general population subgroups.

目的:为了扩大基因组创新目前有限的影响范围,需要开展研究以了解社会心理和文化因素如何影响不同亚群体对基因检测的反应。癌症宿命论在癌症预防中非常重要,值得在基因组学和行为改变的背景下从理论和实证角度加以关注:本研究采用了美国新墨西哥州阿尔伯克基市基层医疗机构提供的皮肤癌基因检测(使用黑色素皮质素-1 受体 [MC1R] 基因)随机对照试验(N = 593)的数据。我们研究了癌症宿命论与人口统计学、一般健康信念、感知风险、感知控制、防晒和皮肤筛查行为以及皮肤癌背景下西班牙裔与非西班牙裔癌症担忧的相互关系,并研究了癌症宿命论对研究主要结果(包括 3 个月防晒、癌症担忧和感知风险)的干预效果的调节作用:结果:癌症宿命论与对皮肤癌风险行为的控制感(ps ≤ 0.01)和人口统计学(种族、教育、健康知识;ps 结论:这些研究结果将指导未来的工作,考虑皮肤癌风险行为的控制感:这些发现将指导今后的工作,考虑癌症宿命论在普通人群使用基因组技术中的作用。随着转化基因组学越来越普遍地应用于不同的普通人群亚群,这项工作预计了解决癌症宿命论所需的策略。
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引用次数: 0
Common dyadic coping and its congruence in couples facing breast cancer: The impact on couples' psychological distress. 面对乳腺癌的夫妇中常见的夫妻应对方式及其一致性:对夫妇心理困扰的影响。
IF 3.6 2区 医学 Q1 Psychology Pub Date : 2024-03-01 DOI: 10.1002/pon.6314
Wenjia Liu, Frances Marcus Lewis, Monica Oxford, Ira Kantrowitz-Gordon

Objective: Psychological distress is prevalent in couples facing breast cancer. Couples often deal with breast cancer as a unit instead of as individuals. Couple's dyadic coping is important for their adjustment to breast cancer; however, little is known about how couple's coping congruence influences their distress. This study examined how common dyadic coping (CDC) and coping congruence impact psychological distress in couples facing breast cancer.

Methods: Baseline data were analyzed from 343 women with recently diagnosed early-stage breast cancer and their partners who participated in a randomized clinical trial. Psychological distress was indicated by depressed mood and state anxiety. Common dyadic coping was measured by a self-report scale. Coping congruence was assessed by the absolute difference between a woman's and her partner's CDC scores.

Results: Higher CDC scores were associated with lower psychological distress in both women and partners. In the CDC subscales, women who suffered less scored higher on open communication, sharing a positive outlook, and lower on avoidance coping. Partners who suffered less scored higher on open communication, sharing a positive outlook, spending time talking, and lower on avoidance coping. Greater congruence in CDC was associated with lower psychological distress in women and their partners. Congruence in sharing a positive outlook benefited both members of the dyad; congruence in avoidance coping significantly benefited patients; congruence in open communication significantly benefited partners.

Conclusions: CDC and its congruence in specific areas have potential benefit to couple's psychological distress when facing breast cancer. Health care providers could consider enhancing couple's CDC and coping congruence to improve their adjustment.

目的:面对乳腺癌的夫妇普遍存在心理困扰。夫妇通常作为一个整体而非个体来应对乳腺癌。夫妻双方的应对方式对他们适应乳腺癌非常重要;然而,人们对夫妻双方应对方式的一致性如何影响他们的痛苦知之甚少。本研究探讨了共同的二元应对(CDC)和应对一致性如何影响面临乳腺癌的夫妇的心理压力:分析了 343 名最近确诊为早期乳腺癌的妇女及其伴侣的基线数据,这些妇女及其伴侣参加了一项随机临床试验。心理困扰表现为情绪低落和状态焦虑。通过自我报告量表测量常见的夫妻应对方式。应对一致性通过女性和伴侣的CDC得分的绝对差值来评估:结果:女性和伴侣的 CDC 分数越高,其心理压力越小。在 CDC 分量表中,遭受痛苦较少的女性在坦诚交流、分享积极观点方面得分较高,而在回避应对方面得分较低。遭受痛苦较少的伴侣在坦诚交流、分享积极观点、花时间交谈方面得分较高,在逃避应对方面得分较低。疾病预防控制中心的一致性越高,妇女及其伴侣的心理压力就越低。在分享积极观点方面的一致性使二人中的双方都受益;在回避应对方面的一致性使患者显著受益;在坦诚交流方面的一致性使伴侣显著受益:疾病预防控制中心及其在特定领域的一致性对夫妇在面对乳腺癌时的心理压力有潜在益处。医疗服务提供者可以考虑加强夫妻双方的CDC和应对一致性,以改善他们的适应情况。
{"title":"Common dyadic coping and its congruence in couples facing breast cancer: The impact on couples' psychological distress.","authors":"Wenjia Liu, Frances Marcus Lewis, Monica Oxford, Ira Kantrowitz-Gordon","doi":"10.1002/pon.6314","DOIUrl":"10.1002/pon.6314","url":null,"abstract":"<p><strong>Objective: </strong>Psychological distress is prevalent in couples facing breast cancer. Couples often deal with breast cancer as a unit instead of as individuals. Couple's dyadic coping is important for their adjustment to breast cancer; however, little is known about how couple's coping congruence influences their distress. This study examined how common dyadic coping (CDC) and coping congruence impact psychological distress in couples facing breast cancer.</p><p><strong>Methods: </strong>Baseline data were analyzed from 343 women with recently diagnosed early-stage breast cancer and their partners who participated in a randomized clinical trial. Psychological distress was indicated by depressed mood and state anxiety. Common dyadic coping was measured by a self-report scale. Coping congruence was assessed by the absolute difference between a woman's and her partner's CDC scores.</p><p><strong>Results: </strong>Higher CDC scores were associated with lower psychological distress in both women and partners. In the CDC subscales, women who suffered less scored higher on open communication, sharing a positive outlook, and lower on avoidance coping. Partners who suffered less scored higher on open communication, sharing a positive outlook, spending time talking, and lower on avoidance coping. Greater congruence in CDC was associated with lower psychological distress in women and their partners. Congruence in sharing a positive outlook benefited both members of the dyad; congruence in avoidance coping significantly benefited patients; congruence in open communication significantly benefited partners.</p><p><strong>Conclusions: </strong>CDC and its congruence in specific areas have potential benefit to couple's psychological distress when facing breast cancer. Health care providers could consider enhancing couple's CDC and coping congruence to improve their adjustment.</p>","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2024-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140065790","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
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Psycho‐Oncology
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