Developing a Web-Based Shared Decision-Making Tool for Fertility Preservation Among Reproductive-Age Women With Breast Cancer: An Action Research Approach

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Abstract

Background

The pregnancy rate after cancer treatment for female survivors is lower than that of the general population. Future infertility is a significant concern for patients with breast cancer and is associated with a poor quality of life. Reproductive-age patients with breast cancer have safe options when choosing a type of fertility preservation method to be applied. Better information and support resources aimed at women to support their decision making are needed.

Objective

The objective of this study was to develop a web-based shared decision-making tool for helping patients with breast cancer make decisions on fertility preservation.

Methods

We used the action research cycle of observing, reflecting, planning, and acting to develop a web-based shared decision-making tool. The following four phrases were applied: (1) observe and reflect—collect and analyze the decision-making experiences of patients and health care providers; (2) reflect and plan—apply the initial results to create a paper design and modify the content; (3) plan and act—brainstorm about the web pages and modify the content; (4) act and observe—evaluate the effectiveness and refine the website’s shared decision-making tool. Interviews, group meetings, and constant dialogue were conducted between the various participants at each step. Effectiveness was evaluated using the Preparation for Decision-Making scale.

Results

Five major parts were developed with the use of the action research approach. The Introduction (part 1) describes the severity of cancer treatment and infertility. Options (part 2) provides the knowledge of fertility preservation. The shared decision-making tool was designed as a step-by-step process (part 3) that involves the comparison of options, patient values, and preferences; their knowledge regarding infertility and options; and reaching a collective decision. Resources (part 4) provides information on the hospitals that provide such services, and References (part 5) lists all the literature cited in the website. The results show the web-based shared decision-making meets both patients’ and health providers’ needs and helps reproductive-age patients with breast cancer make decisions about fertility preservation.

Conclusions

We have created the first web-based shared decision-making tool for making fertility preservation decisions in Taiwan. We believe female patients of reproductive age will find the tool useful and its use will become widespread, which should increase patient autonomy and improve communication about fertility preservation with clinicians.

Trial Registration

Clinicaltrials.gov NCT04602910; https://clinicaltrials.gov/ct2/show/NCT04602910

Related collections

Most cited references 42

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Shared decision making: Concepts, evidence, and practice

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Cancer incidence and mortality among young adults aged 20–39 years worldwide in 2012: a population-based study

Miranda M Fidler, Sumit Gupta, Isabelle Soerjomataram … (2017)

To date, the burden of cancer among young adults has rarely been studied in depth. Our aim was to describe the scale and profile of cancer incidence and mortality worldwide among 20-39 year-olds, highlighting major patterns by age, sex, development level, and geographical region.

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Implementing shared decision-making: consider all the consequences

Glyn Elwyn, Dominick Frosch, Sarah Kobrin (2016)

Background The ethical argument that shared decision-making is “the right” thing to do, however laudable, is unlikely to change how healthcare is organized, just as evidence alone will be an insufficient factor: practice change is governed by factors such as cost, profit margin, quality, and efficiency. It is helpful, therefore, when evaluating new approaches such as shared decision-making to conceptualize potential consequences in a way that is broad, long-term, and as relevant as possible to multiple stakeholders. Yet, so far, evaluation metrics for shared decision-making have been mostly focused on short-term outcomes, such as cognitive or affective consequences in patients. The goal of this article is to hypothesize a wider set of consequences, that apply over an extended time horizon, and include outcomes at interactional, team, organizational and system levels, and to call for future research to study these possible consequences. Main argument To date, many more studies have evaluated patient decision aids rather than other approaches to shared decision-making, and the outcomes measured have typically been focused on short-term cognitive and affective outcomes, for example knowledge and decisional conflict. From a clinicians perspective, the shared decision-making process could be viewed as either intrinsically rewarding and protective, or burdensome and impractical, yet studies have not focused on the impact on professionals, either positive or negative. At interactional levels, group, team, and microsystem, the potential long-term consequences could include the development of a culture where deliberation and collaboration are regarded as guiding principles, where patients are coached to assess the value of interventions, to trade-off benefits versus harms, and assess their burdens—in short, to new social norms in the clinical workplace. At organizational levels, consistent shared decision-making might boost patient experience evaluations and lead to fewer complaints and legal challenges. In the long-term, shared decision-making might lead to changes in resource utilization, perhaps to reductions in cost, and to modification of workforce composition. Despite the gradual shift to value-based payment, some organizations, motivated by continued income derived from achieving high volumes of procedures and contacts, will see this as a negative consequence. Conclusion We suggest that a broader conceptualization and measurement of shared decision-making would provide a more substantive evidence base to guide implementation. We outline a framework which illustrates a hypothesized set of proximal, distal, and distant consequences that might occur if collaboration and deliberation could be achieved routinely, proposing that well-informed preference-based patient decisions might lead to safer, more cost-effective healthcare, which in turn might result in reduced utilization rates and improved health outcomes.

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Author and article information

Contributors

Sheng-Miauh Huang:

ORCID: https://orcid.org/0000-0002-3715-0147

MacKay Medical CollegeDepartment of NursingNo. 46, Section 3, Zhongzheng RoadSanzhi DistrictNew Taipei City, 252Taiwan886 2 26360303 ext 1316r910862@yahoo.com.tw

Journal

Journal ID (nlm-ta): J Med Internet Res

Journal ID (iso-abbrev): J Med Internet Res

Journal ID (publisher-id): JMIR

Title: Journal of Medical Internet Research

Publisher: JMIR Publications (Toronto, Canada )

ISSN (Print): 1439-4456

ISSN (Electronic): 1438-8871

Publication date Collection: March 2021

Publication date (Electronic): 17 March 2021

Volume: 23

Issue: 3

Electronic Location Identifier: e24926

Affiliations

[1 ] Comprehensive Breast Health Center Department of Surgery, Taipei Veterans General Hospital Taipei Taiwan

[2 ] School of Medicine National Yang Ming Chiao Tung University Taipei Taiwan

[3 ] Division of Reproductive Endocrinology and Infertility Department of Obstetrics and Gynecology Taipei Veterans General Hospital Taipei Taiwan

[4 ] Division of Medical Oncology Department of Oncology Taipei Veterans General Hospital Taipei Taiwan

[5 ] MacKay Medical College Department of Nursing New Taipei City Taiwan

Author notes

Corresponding Author: Sheng-Miauh Huang r910862@ 123456yahoo.com.tw

Author information

Ling-Ming Tseng https://orcid.org/0000-0002-4648-6646

Pei-Ju Lien https://orcid.org/0000-0003-4644-1533

Chen-Yu Huang https://orcid.org/0000-0003-3527-2789

Yi-Fang Tsai https://orcid.org/0000-0001-7665-0462

Ta-Chung Chao https://orcid.org/0000-0003-1451-1939

Sheng-Miauh Huang https://orcid.org/0000-0002-3715-0147

Article

Publisher ID: v23i3e24926

DOI: 10.2196/24926

PMC ID: 8074988

PubMed ID: 33729164

SO-VID: b2304978-6bdb-4f8a-9a4f-af22f0b449a3

Copyright © ©Ling-Ming Tseng, Pei-Ju Lien, Chen-Yu Huang, Yi-Fang Tsai, Ta-Chung Chao, Sheng-Miauh Huang. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 17.03.2021.

License:

This is an open-access article distributed under the terms of the Creative Commons Attribution License ( https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.

History

Date received : 24 October 2020

Date revision requested : 28 December 2020

Date revision received : 8 January 2021

Date accepted : 4 February 2021

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