Catherine Benedict, Jennifer S. Ford, Lidia Schapira, Alexandra Davis, Pamela Simon, David Spiegel, Michael Diefenbach
{"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}
引用次数: 0
Abstract
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.