Catherine Benedict, Jennifer S. Ford, Lidia Schapira, Alexandra Davis, Pamela Simon, David Spiegel, Michael Diefenbach
{"title":"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","authors":"Catherine Benedict, Jennifer S. Ford, Lidia Schapira, Alexandra Davis, Pamela Simon, David Spiegel, Michael Diefenbach","doi":"10.1002/pon.6323","DOIUrl":null,"url":null,"abstract":"ObjectiveMany young adult female cancer survivors need to use reproductive medicine, surrogacy, or adoption to have a child. This study pilot tested <jats:italic>Roadmap to Parenthood</jats:italic>, 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 <jats:italic>t</jats:italic>‐tests and repeated measures ANOVA evaluated usage effects. Effect size estimates were calculated.ResultsParticipants (<jats:italic>N</jats:italic> = 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 (<jats:italic>p</jats:italic> < 0.001; Cohen's <jats:italic>d</jats:italic> = 0.85), unmet information needs (<jats:italic>p</jats:italic> < 0.001; Cohen's <jats:italic>d</jats:italic> = 0.70), self‐efficacy (<jats:italic>p</jats:italic> = 0.003; Cohen's <jats:italic>d</jats:italic> = 0.40), and self‐efficacy for managing negative emotions (<jats:italic>p</jats:italic> = 0.03; Cohen's <jats:italic>d</jats:italic> = 0.29); effects were sustained at T3. There was no change in reproductive distress (<jats:italic>p</jats:italic> = 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.","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":"16 1","pages":""},"PeriodicalIF":3.3000,"publicationDate":"2024-04-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Preliminary testing of “roadmap to parenthood” decision aid and planning tool for family building after cancer: Results of a single‐arm pilot study\",\"authors\":\"Catherine Benedict, Jennifer S. Ford, Lidia Schapira, Alexandra Davis, Pamela Simon, David Spiegel, Michael Diefenbach\",\"doi\":\"10.1002/pon.6323\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"ObjectiveMany young adult female cancer survivors need to use reproductive medicine, surrogacy, or adoption to have a child. This study pilot tested <jats:italic>Roadmap to Parenthood</jats:italic>, 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 <jats:italic>t</jats:italic>‐tests and repeated measures ANOVA evaluated usage effects. Effect size estimates were calculated.ResultsParticipants (<jats:italic>N</jats:italic> = 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 (<jats:italic>p</jats:italic> < 0.001; Cohen's <jats:italic>d</jats:italic> = 0.85), unmet information needs (<jats:italic>p</jats:italic> < 0.001; Cohen's <jats:italic>d</jats:italic> = 0.70), self‐efficacy (<jats:italic>p</jats:italic> = 0.003; Cohen's <jats:italic>d</jats:italic> = 0.40), and self‐efficacy for managing negative emotions (<jats:italic>p</jats:italic> = 0.03; Cohen's <jats:italic>d</jats:italic> = 0.29); effects were sustained at T3. There was no change in reproductive distress (<jats:italic>p</jats:italic> = 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.\",\"PeriodicalId\":20779,\"journal\":{\"name\":\"Psycho‐Oncology\",\"volume\":\"16 1\",\"pages\":\"\"},\"PeriodicalIF\":3.3000,\"publicationDate\":\"2024-04-17\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Psycho‐Oncology\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1002/pon.6323\",\"RegionNum\":2,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"ONCOLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Psycho‐Oncology","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1002/pon.6323","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"ONCOLOGY","Score":null,"Total":0}
引用次数: 0
摘要
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。
Preliminary testing of “roadmap to parenthood” decision aid and planning tool for family building after cancer: Results of a single‐arm pilot study
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.
期刊介绍:
Psycho-Oncology is concerned with the psychological, social, behavioral, and ethical aspects of cancer. This subspeciality addresses the two major psychological dimensions of cancer: the psychological responses of patients to cancer at all stages of the disease, and that of their families and caretakers; and the psychological, behavioral and social factors that may influence the disease process. Psycho-oncology is an area of multi-disciplinary interest and has boundaries with the major specialities in oncology: the clinical disciplines (surgery, medicine, pediatrics, radiotherapy), epidemiology, immunology, endocrinology, biology, pathology, bioethics, palliative care, rehabilitation medicine, clinical trials research and decision making, as well as psychiatry and psychology.
This international journal is published twelve times a year and will consider contributions to research of clinical and theoretical interest. Topics covered are wide-ranging and relate to the psychosocial aspects of cancer and AIDS-related tumors, including: epidemiology, quality of life, palliative and supportive care, psychiatry, psychology, sociology, social work, nursing and educational issues.
Special reviews are offered from time to time. There is a section reviewing recently published books. A society news section is available for the dissemination of information relating to meetings, conferences and other society-related topics. Summary proceedings of important national and international symposia falling within the aims of the journal are presented.