Perceived impact of a decision-aid and planning tool for family building after cancer for young adult female cancer survivors

Benedict C, Shuk E, Ford JS (2016) Fertility issues in adolescent and young adult cancer survivors. J Adolesc Young Adult Oncol 5(1):48–57. https://doi.org/10.1089/jayao.2015.0024

Article  PubMed  PubMed Central  Google Scholar 

Coccia PF, Pappo AS, Beaupin L et al (2018) Adolescent and young adult oncology, version 2.2018, NCCN Clinical Practice Guidelines in Oncology. J Natl Compr Canc Netw 16(1):66–97. https://doi.org/10.6004/jnccn.2018.0001

Article  PubMed  Google Scholar 

Van Dorp W, Haupt R, Anderson RA et al (2018) Reproductive function and outcomes in female survivors of childhood, adolescent, and young adult cancer: a review. JCO 36(21):2169–2180. https://doi.org/10.1200/JCO.2017.76.3441

Article  Google Scholar 

Benedict C, Thom B, Friedman DN, Pottenger E, Raghunathan N, Kelvin JF (2018) Fertility information needs and concerns post-treatment contribute to lowered quality of life among young adult female cancer survivors. Support Care Cancer 26(7):2209–2215. https://doi.org/10.1007/s00520-017-4006-z

Article  PubMed  PubMed Central  Google Scholar 

Young K, Shliakhtsitsava K, Natarajan L et al (2019) Fertility counseling before cancer treatment and subsequent reproductive concerns among female adolescent and young adult cancer survivors. Cancer 125(6):980–989. https://doi.org/10.1002/cncr.31862

Article  PubMed  Google Scholar 

Canzona MR, Victorson DE, Murphy K et al (2021) A conceptual model of fertility concerns among adolescents and young adults with cancer. Psychooncology 30(8):1383–1392. https://doi.org/10.1002/pon.5695

Article  PubMed  PubMed Central  Google Scholar 

Benedict C, Hahn AL, McCready A, Kelvin JF, Diefenbach M, Ford JS (2020) Toward a theoretical understanding of young female cancer survivors’ decision-making about family-building post-treatment. Support Care Cancer 28(10):4857–4867. https://doi.org/10.1007/s00520-020-05307-1

Article  PubMed  PubMed Central  Google Scholar 

Benedict C, Ford JS, Schapira L et al (2024) Preliminary testing of “roadmap to parenthood” decision aid and planning tool for family building after cancer: results of a single-arm pilot study. Psychooncology 33(4):e6323. https://doi.org/10.1002/pon.6323

Article  PubMed  PubMed Central  Google Scholar 

Benedict C, Dauber-Decker KL, King D, Hahn A, Ford JS, Diefenbach MA (2021) Decision aid intervention for family building after cancer: developmental study on the initial steps to consider when designing a web-based prototype. JMIR Form Res 5(1):e20841. https://doi.org/10.2196/20841

Article  PubMed  PubMed Central  Google Scholar 

Benedict C, Stal J, Davis A et al (2023) Greater fertility distress and avoidance relate to poorer decision making about family building after cancer among adolescent and young adult female survivors. Psychooncology 32(10):1606–1615. https://doi.org/10.1002/pon.6212

Article  PubMed  PubMed Central  Google Scholar 

Mersereau JE, Goodman LR, Deal AM, Gorman JR, Whitcomb BW, Su HI (2013) To preserve or not to preserve: how difficult is the decision about fertility preservation? Cancer 119(22):4044–4050. https://doi.org/10.1002/cncr.28317

Article  PubMed  Google Scholar 

Nahata L, Anazodo A, Cherven B et al (2023) Optimizing health literacy to facilitate reproductive health decision-making in adolescent and young adults with cancer. Pediatr Blood Cancer 70(S5):e28476. https://doi.org/10.1002/pbc.28476

Article  PubMed  Google Scholar 

Nathan AG, Marshall IM, Cooper JM, Huang ES (2016) Use of decision aids with minority patients: a systematic review. J Gen Intern Med 31(6):663–676. https://doi.org/10.1007/s11606-016-3609-2

Article  PubMed  PubMed Central  Google Scholar 

Ong C, Li AD, Marino JL, Peate M (2024) Interventions to improve oncofertility knowledge and decision-making in patients with low health literacy: a systematic review. Patient Educ Couns 119:108096. https://doi.org/10.1016/j.pec.2023.108096

Article  PubMed  Google Scholar 

Alam S, Elwyn G, Percac-Lima S, Grande S, Durand MA (2016) Assessing the acceptability and feasibility of encounter decision aids for early stage breast cancer targeted at underserved patients. BMC Med Inform Decis Mak 16(1):147. https://doi.org/10.1186/s12911-016-0384-2

Article  PubMed  PubMed Central  Google Scholar 

Rathert C, Wyrwich MD, Boren SA (2013) Patient-centered care and outcomes: a systematic review of the literature. Med Care Res Rev 70(4):351–379. https://doi.org/10.1177/1077558712465774

Article  PubMed  Google Scholar 

Sepucha KR, Borkhoff CM, Lally J et al (2013) Establishing the effectiveness of patient decision aids: key constructs and measurement instruments. BMC Med Inform Decis Mak 13(S2):S12. https://doi.org/10.1186/1472-6947-13-S2-S12

Article  PubMed  PubMed Central  Google Scholar 

Durand MA, Witt J, Joseph-Williams N et al (2015) Minimum standards for the certification of patient decision support interventions: feasibility and application. Patient Educ Couns 98(4):462–468. https://doi.org/10.1016/j.pec.2014.12.009

Article  PubMed  Google Scholar 

Kelly L, Ziebland S, Jenkinson C (2015) Measuring the effects of online health information: scale validation for the e-Health Impact Questionnaire. Patient Educ Couns 98(11):1418–1424. https://doi.org/10.1016/j.pec.2015.06.008

Article  PubMed  Google Scholar 

Allison R, Hayes C, McNulty CAM, Young V (2019) A comprehensive framework to evaluate websites: literature review and development of GoodWeb. JMIR Form Res 3(4):e14372. https://doi.org/10.2196/14372

Article  PubMed  PubMed Central  Google Scholar 

Benedict C, Dauber-Decker KL, Ford JS et al (2022) Development of a web-based decision aid and planning tool for family building after cancer (roadmap to parenthood): usability testing. JMIR Cancer 8(2):e33304. https://doi.org/10.2196/33304

Article  PubMed  PubMed Central  Google Scholar 

Benedict C, Nieh JL, Hahn AL, McCready A, Diefenbach M, Ford JS (2021) “Looking at future cancer survivors, give them a roadmap”: addressing fertility and family-building topics in post-treatment cancer survivorship care. Support Care Cancer 29(4):2203–2213. https://doi.org/10.1007/s00520-020-05731-3

Article  PubMed  Google Scholar 

Coulter A, Stilwell D, Kryworuchko J, Mullen PD, Ng CJ, Van Der Weijden T (2013) A systematic development process for patient decision aids. BMC Med Inform Decis Mak 13(S2):S2. https://doi.org/10.1186/1472-6947-13-S2-S2

Article  PubMed  PubMed Central  Google Scholar 

Decision aid toolkit ‐ patient decision aids ‐ Ottawa Hospital. Research Institute. https://decisionaid.ohri.ca/resources.html. Accessed 10 May 2024

McCaffery KJ, Holmes-Rovner M, Smith SK et al (2013) Addressing health literacy in patient decision aids. BMC Med Inform Decis Mak 13(S2):S10. https://doi.org/10.1186/1472-6947-13-S2-S10

Article  PubMed  PubMed Central  Google Scholar 

Kelvin JF, Thom B, Benedict C et al (2016) Cancer and fertility program improves patient satisfaction with information received. JCO 34(15):1780–1786. https://doi.org/10.1200/JCO.2015.64.5168

Article  CAS  Google Scholar 

Abel T, Hofmann K, Ackermann S, Bucher S, Sakarya S (2015) Health literacy among young adults: a short survey tool for public health and health promotion research. Health Promot Int 30(3):725–735. https://doi.org/10.1093/heapro/dat096

Article  PubMed  Google Scholar 

O’Connor AM (1995) Validation of a decisional conflict scale. Med Decis Making 15(1):25–30. https://doi.org/10.1177/0272989X9501500105

Article  PubMed  Google Scholar 

O’Connor AM (1993) User manual. Decisional conflict scale. https://decisionaid.ohri.ca/docs/develop/User_Manuals/UM_Decisional_Conflict.pdf. Accessed 1 June 2024

Benedict C, Thom BN, Friedman D et al (2016) Young adult female cancer survivors’ unmet information needs and reproductive concerns contribute to decisional conflict regarding posttreatment fertility preservation. Cancer 122(13):2101–2109. https://doi.org/10.1002/cncr.29917

Article  PubMed  Google Scholar 

Gruber-Baldini AL, Velozo C, Romero S, Shulman LM (2017) Validation of the PROMIS® measures of self-efficacy for managing chronic conditions. Qual Life Res 26(7):1915–1924. https://doi.org/10.1007/s11136-017-1527-3

Article  PubMed  PubMed Central 

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