Evaluating the Acceptability and Feasibility of a Sexual Health-Focused Contraceptive Decision Aid for Diverse Young Adults: User-Centered Usability Study.

BACKGROUND: Young adults with low sexual health literacy levels may find it difficult to make informed decisions about contraceptive methods. We developed and pilot-tested a web-based decision aid-Healthy Sex Choices-designed to support diverse young adults with their contraceptive decision-making. OBJECTIVE: This pilot study aimed to evaluate whether the Healthy Sex Choices decision aid is acceptable and feasible to patients and clinicians. METHODS: We used the Ottawa Decision Support Framework and the International Patient Decision Aid Standards to develop and pilot the decision tool. We first conducted a needs assessment with our advisory panel (5 clinicians and 2 patients) that informed decision aid development. All panelists participated in semistructured interviews about their experience with contraceptive counseling. Clinicians also completed a focus group session centered around the development of sex education content for the tool. Before commencing the pilot study, 5 participants from ResearchMatch (Vanderbilt University Medical Center) assessed the tool and suggested improvements. RESULTS: Participants were satisfied with the tool, rating the acceptability as "good." Interviewees revealed that the tool made contraceptive decision-making easier and would recommend the tool to a family member or friend. Participants had a nonsignificant change in knowledge scores (53% before vs 45% after; P=.99). Overall, decisional conflict scores significantly decreased (16.1 before vs 2.8 after; P<.001) with the informed subscale (patients feeling more informed) having the greatest decline (23.1 vs 4.7; mean difference 19.0, SD 27.1). Subanalyses of contraceptive knowledge and decisional conflict illustrated that participants of color had lower knowledge scores (48% vs 55%) and higher decisional conflict (20.0 vs 14.5) at baseline than their white counterparts. CONCLUSIONS: Participants found Healthy Sex Choices to be acceptable and reported reduced decisional conflict after using the tool. The development and pilot phases of this study provided a foundation for creating reproductive health decision aids that acknowledge and provide guidance for diverse patient populations.

Clinicians' Perspectives and Proposed Solutions to Improve Contraceptive Counseling in the United States: Qualitative Semistructured Interview Study With Clinicians From the Society of Family Planning.

BACKGROUND: Contraceptive care is a key element of reproductive health, yet only 12%-30% of women report being able to access and receive the information they need to make these complex, personal health care decisions. Current guidelines recommend implementing shared decision-making approaches; and tools such as patient decision aid (PtDA) applications have been proposed to improve patients' access to information, contraceptive knowledge, decisional conflict, and engagement in decision-making and contraception use. To inform the design of meaningful, effective, elegant, and feasible PtDA applications, studies are needed of all users' current experiences, needs, and barriers. While multiple studies have explored patients' experiences, needs, and barriers, little is known about clinicians' experiences, perspectives, and barriers to delivering contraceptive counseling. OBJECTIVE: This study focused on assessing clinicians' experiences, including their perspectives of patients' needs and barriers. It also explored clinicians' suggestions for improving contraceptive counseling and the feasibility of a contraceptive PtDA. METHODS: Following the decisional needs assessment approach, we conducted semistructured interviews with clinicians recruited from the Society of Family Planning. The Ottawa Decision Support Framework informed the interview guide and initial codebook, with a specific focus on decision support and decisional needs as key elements that should be assessed from the clinicians' perspective. An inductive content approach was used to analyze data and identify primary themes and suggestions for improvement. RESULTS: Fifteen clinicians (12 medical doctors and 3 nurse practitioners) participated, with an average of 19 years of experience in multiple regions of the United States. Analyses identified 3 primary barriers to the provision of quality contraceptive counseling: gaps in patients' underlying sexual health knowledge, biases that impede decision-making, and time constraints. All clinicians supported the development of contraceptive PtDAs as a feasible solution to these main barriers. Multiple suggestions for improvement were provided, including clinician- and system-level training, tools, and changes that could support successful implementation. CONCLUSIONS: Clinicians and developers interested in improving contraceptive counseling and decision-making may wish to incorporate approaches that assess and address upstream factors, such as sexual health knowledge and existing heuristics and biases. Clinical leaders and administrators may also wish to prioritize solutions that improve equity and accessibility, including PtDAs designed to provide education and support in advance of the time-constrained consultations, and strategic training opportunities that support cultural awareness and shared decision-making skills. Future studies can then explore whether well-designed, user-centered shared decision-making programs lead to successful and sustainable uptake and improve patients' reproductive health contraceptive decision-making.

Websites about, not for, adolescents? A systematic analysis of online fertility preservation information for adolescent and young adult cancer patients.

PURPOSE: Fertility preservation is an increasingly important topic in adolescent and young adult cancer survivorship, yet treatments remain under-utilized, possibly due to lack of awareness and understanding. The internet is widely used by adolescents and young adults and has been proposed to fill knowledge gaps and advance high-quality, more equitable care. As a first step, this study analyzed the quality of current fertility preservation resources online and identified opportunities for improvement. METHODS: We conducted a systematic analysis of 500 websites to assess the quality, readability, and desirability of website features, and the inclusion of clinically relevant topics. RESULTS: The majority of the 68 eligible websites were low quality, written at college reading levels, and included few features that younger patients find desirable. Websites mentioned more common fertility preservation treatments than promising experimental treatments, and could be improved with cost information, socioemotional impacts, and other equity-related fertility topics. CONCLUSIONS: Currently, the majority of fertility preservation websites are about, but not for, adolescent and young adult patients. High-quality educational websites are needed that address outcomes that matter to teens and young adults, with a priority on solutions that prioritize equity. IMPLICATIONS FOR CANCER SURVIVORS: Adolescent and young adult survivors have limited access to high-quality fertility preservation websites that are designed for their needs. There is a need for the development of fertility preservation websites that are clinically comprehensive, written at appropriate reading levels, inclusive, and desirable. We include specific recommendations that future researchers can use to develop websites that could better address AYA populations and improve the fertility preservation decision making process.

Assessing gaps in motherhood after cancer: development and psychometric testing of the Survivorship Oncofertility Barriers Scale.

OBJECTIVE: With a growing population of young cancer survivors, there is an increasing need to address the gaps in evidence regarding cancer survivors' obstetric outcomes, fertility care access, and experiences. As part of a large research program, this study engaged survivors and experts in co-developing and testing the validity, reliability, acceptability, and feasibility of a scale to assess survivor-reported barriers to motherhood after cancer. METHODS: Scale items were developed based on literature and expert review of 226 reproductive health items, and six experience and focus groups with 26 survivors of breast and gynecological cancers. We then invited 128 survivors to complete the scale twice, 48 hours apart, and assessed the scale's psychometric properties using exploratory factor analyses including reliability, known-group validity, and convergent validity. RESULTS: Item development identified three primary themes: multifaceted barriers for cancer survivors; challenging decisions about whether and how to pursue motherhood; and a timely need for evidence about obstetric outcomes. Retained items were developed into a 24-item prototype scale with four subscales. Prototype testing showed acceptable internal consistency (Cronbach's alpha=0.71) and test-retest reliability (intraclass correlation coefficient=0.70). Known-group validity was supported; the scale discriminated between groups by age (x=70.0 for patients ≥35 years old vs 54.5 for patients <35 years old, p=0.02) and years since diagnosis (x=71.5 for ≥6 years vs 54.3 for<6 years, p=0.01). The financial subscale was correlated with the Economic StraiN and Resilience in Cancer measure of financial toxicity (ρ=0.39, p<0.001). The scale was acceptable and feasibly delivered online. The final 22-item scale is organized in four subscales: personal, medical, relational, and financial barriers to motherhood. CONCLUSION: The Survivorship Oncofertility Barriers Scale demonstrated validity, reliability, and was acceptable and feasible when delivered online. Implementing the scale can gather the data needed to inform shared decision making and to address disparities in fertility care for survivors.

Websites about, not for, adolescents? A systematic analysis of online fertility preservation information for adolescent and young adult cancer patients.

Purpose Fertility preservation is an increasingly important topic in adolescent and young adult cancer survivorship, yet treatments remain under-utilized, possibly due to lack of awareness and understanding. The internet is widely used by adolescents and young adults and has been proposed to fill knowledge gaps and advance high-quality, more equitable care. As a first step, this study analyzed the quality of current fertility preservation resources online and identified opportunities for improvement. Methods We conducted a systematic analysis of 500 websites to assess the quality, readability, and desirability of website features, and the inclusion of clinically relevant topics. Results The majority of the 68 eligible websites were low quality, written at college reading levels, and included few features that younger patients find desirable. Websites mentioned more common fertility preservation treatments than promising experimental treatments, and could be improved with cost information, socioemotional impacts, and other equity-related fertility topics. Conclusions Currently, the majority of fertility preservation websites are about, but not for, adolescent and young adult patients. High-quality educational websites are needed that address outcomes that matter to teens and young adults, with a priority on solutions that prioritize equity. Implications for Cancer Survivors: Adolescent and young adult survivors have limited access to high-quality fertility preservation websites that are designed for their needs. There is a need for the development of fertility preservation websites that are clinically comprehensive, written at appropriate reading levels, inclusive, and desirable. We include specific recommendations that future researchers can use to develop websites that could better address AYA populations and improve the fertility preservation decision making process.

Preserving Fertility in Women With Cancer: Practice Strategies.

This Viewpoint discusses strategies to optimize oncofertility care and improve the survivorship experience of women with cancer.

Breast Decisions: Recommender System for Appearance Counseling about Breast Reconstruction.

Appearance counseling is an important component of the consent process for breast reconstruction. The purpose of appearance counseling is to help the patient form realistic expectations of what she might look like after breast reconstruction. In this article, we introduce a recommender system, "BreastDecisions," for appearance counseling that suggests photographs of previous patients that are tailored to a specific patient to help her form realistic expectations of her own reconstruction. Methods: We present user specifications and algorithm parameters needed to incorporate the recommender system into the appearance counseling workflow. We demonstrate the system for a common counseling scenario using a knowledgebase of previous breast reconstruction patients. The medical appropriateness of the recommended photographs for use in appearance counseling was evaluated by experts using a four-point rating system. Results: The recommender system presents photographs that are medically appropriate for counseling a specific patient, depicts typical outcomes, and adapts to a variety of clinical workflows. For each of 33 patients taken as examples of breast reconstruction patients, we used the system to identify photographs for appearance counseling. The baseline average medical appropriateness of the recommended photographs was between mostly appropriate (some explanation needed) and medically appropriate (minimal explanation needed). We demonstrate filtering and ranking steps to reduce the number of recommended photographs and increase the average medical appropriateness. Conclusions: Our recommender system automatically suggests photographs of previous breast reconstruction patients for use in counseling a patient about appearance outcomes. The system is patient-specific and customizable to a particular surgeon's practice.

What Does "Dr. Google" Show Patients Searching for Breast Reconstruction Outcomes Photographs?

Many women with breast cancer search the internet for photographs of their potential reconstruction outcomes, but little is known about the quality, variety, and relevance of images patients are viewing. Methods: Breast reconstruction outcome photographs identified by a Google Images search were assessed based on the American Society of Plastic Surgeons/Plastic Surgery Foundation photographic guidelines. Information such as source metadata, breast reconstruction procedure information, and subject demographics was collected from the photographs. Additional analyses were conducted to assess whether nipple reconstruction or tattooing occurred and was disclosed, whether a symmetry procedure was performed and disclosed, and whether donor site scarring is visible in abdominal flap photographs. Results: We acquired and analyzed 114 photograph sets. Although a variety of images were readily available, the majority of photograph sets did not follow photographic guidelines or provide sufficient information. Most photograph sets (60%) indicated symmetry procedures when a symmetry procedure was evident, but only 40% of photograph sets disclosed a nipple procedure when a nipple procedure was evident. Only 40% of abdominal flap photographs showed donor site scarring. Subject demographics were largely missing: 50% of photograph sets included subject age, 3% included race or ethnicity, and 12% included weight or BMI. Conclusions: Although breast reconstruction outcome photographs shown by "Dr. Google" represent a variety of reconstruction types, they typically lack information that a patient needs to assess self-applicability. Patients may benefit from discussion with their healthcare team about the strengths and limitations of breast reconstruction outcome photographs available on the internet.

The role of psychosocial factors in patients' recollections of breast reconstruction options discussed with their surgeons.

A patient's comprehension and memory of conversations with their providers plays an important role in their healthcare. Adult breast cancer patients whose legal sex was female and who underwent treatment at the Center for Reconstructive Surgery at The University of Texas MD Anderson Cancer Center were asked to indicate which breast reconstruction procedures they discussed with their surgeon. We focused on the three most frequent responses: (a) participants who remembered discussing implant-based, tissue-based, and combination procedures; (b) participants who remembered only an implant-based option being discussed; and (c) participants who remember only a tissue-based option being discussed. We used multinomial logistic regression models to explore the psychosocial factors associated with patients' recollections of their breast reconstruction options after discussions with their reconstructive surgeons, controlling for medical factors that impact surgical decision-making. Our analyses identified body mass index, body image investment, and body image as statistically significantly associated with the reconstructive options that a participant recalls discussing with their surgeon. Our findings highlight body image investment and body image as important psychological factors that may influence what patients remember from consultations about breast reconstruction options.

Goldilocks Principle: Preference for Change in Breast Size in Breast Cancer Reconstruction Patients.

Patients' preferences regarding changing or maintaining their breast size after mastectomy and reconstruction are important but understudied determinants of post-surgical satisfaction and quality of life. The goal of this study was to identify factors associated with preferences for changing or maintaining breast size for women undergoing breast reconstruction at The University of Texas MD Anderson Cancer Center in the United States from 2011 to 2014. The average age of participants was 45.7 ± 9.1 years. At baseline, mean average breast volumes were 755.7 ± 328.4 mL for all women (n = 48), 492.3 mL ± 209.3 for 13 women who preferred to be "bigger than now," 799.2 mL ± 320.9 for 25 women who preferred to remain "about the same," and 989.3 mL ± 253.1 for 10 women who preferred "smaller than now." Among the 23 women who preferred to change their breast size, 19 desired to shift toward the mean. Women with the smallest and largest 20% of baseline breast size were more likely to desire a change toward the mean (p = 0.006). Multinomial logistic regression models found average breast volume and satisfaction with breast size to be the most important factors associated with preferences for changing or maintaining breast size for women undergoing breast reconstruction. This study provides preliminary evidence for a "Goldilocks principle" in women's preferences for breast size change in the context of breast reconstruction, and identifies hypotheses for future studies of the associations among preference for change in breast size, preference achievement, and post-reconstruction body image.

Decision Making When Cancer Becomes Chronic: Needs Assessment for a Web-Based Medullary Thyroid Carcinoma Patient Decision Aid.

BACKGROUND: In cancers with a chronic phase, patients and family caregivers face difficult decisions such as whether to start a novel therapy, whether to enroll in a clinical trial, and when to stop treatment. These decisions are complex, require an understanding of uncertainty, and necessitate the consideration of patients' informed preferences. For some cancers, such as medullary thyroid carcinoma, these decisions may also involve significant out-of-pocket costs and effects on family members. Providers have expressed a need for web-based interventions that can be delivered between consultations to provide education and prepare patients and families to discuss these decisions. To ensure that these tools are effective, usable, and understandable, studies are needed to identify patients', families', and providers' decision-making needs and optimal design strategies for a web-based patient decision aid. OBJECTIVE: Following the international guidelines for the development of a web-based patient decision aid, the objectives of this study are to engage potential users to guide development; review the existing literature and available tools; assess users' decision-making experiences, needs, and design recommendations; and identify shared decision-making approaches to address each need. METHODS: This study used the decisional needs assessment approach, which included creating a stakeholder advisory panel, mapping decision pathways, conducting an environmental scan of existing materials, and administering a decisional needs assessment questionnaire. Thematic analyses identified current decision-making pathways, unmet decision-making needs, and decision support strategies for meeting each need. RESULTS: The stakeholders reported wide heterogeneity in decision timing and pathways. Relevant existing materials included 2 systematic reviews, 9 additional papers, and multiple educational websites, but none of these met the criteria for a patient decision aid. Patients and family members (n=54) emphasized the need for plain language (46/54, 85%), shared decision making (45/54, 83%), and help with family discussions (39/54, 72%). Additional needs included information about uncertainty, lived experience, and costs. Providers (n=10) reported needing interventions that address misinformation (9/10, 90%), foster realistic expectations (9/10, 90%), and address mistrust in clinical trials (5/10, 50%). Additional needs included provider tools that support shared decision making. Both groups recommended designing a web-based patient decision aid that can be tailored to (64/64, 100%) and delivered on a hospital website (53/64, 83%), focuses on quality of life (45/64, 70%), and provides step-by-step guidance (43/64, 67%). The study team identified best practices to meet each need, which are presented in the proposed decision support design guide. CONCLUSIONS: Patients, families, and providers report multifaceted decision support needs during the chronic phase of cancer. Web-based patient decision aids that provide tailored support over time and explicitly address uncertainty, quality of life, realistic expectations, and effects on families are needed.

Patients' and Providers' Needs and Preferences When Considering Fertility Preservation Before Cancer Treatment: Decision-Making Needs Assessment.

BACKGROUND: As cancer treatments continue to improve, it is increasingly important that women of reproductive age have an opportunity to decide whether they want to undergo fertility preservation treatments to try to protect their ability to have a child after cancer. Clinical practice guidelines recommend that providers offer fertility counseling to all young women with cancer; however, as few as 12% of women recall discussing fertility preservation. The long-term goal of this program is to develop an interactive web-based patient decision aid to improve awareness, access, knowledge, and decision making for all young women with cancer. The International Patient Decision Aid Standards collaboration recommends a formal decision-making needs assessment to inform and guide the design of understandable, meaningful, and usable patient decision aid interventions. OBJECTIVE: This study aims to assess providers' and survivors' fertility preservation decision-making experiences, unmet needs, and initial design preferences to inform the development of a web-based patient decision aid. METHODS: Semistructured interviews and an ad hoc focus group assessed current decision-making experiences, unmet needs, and recommendations for a patient decision aid. Two researchers coded and analyzed the transcripts using NVivo (QSR International). A stakeholder advisory panel guided the study and interpretation of results. RESULTS: A total of 51 participants participated in 46 interviews (18 providers and 28 survivors) and 1 ad hoc focus group (7 survivors). The primary themes included the importance of fertility decisions for survivorship, the existence of significant but potentially modifiable barriers to optimal decision making, and a strong support for developing a carefully designed patient decision aid website. Providers reported needing an intervention that could quickly raise awareness and facilitate timely referrals. Survivors reported needing understandable information and help with managing uncertainty, costs, and pressures. Design recommendations included providing tailored information (eg, by age and cancer type), optional interactive features, and multimedia delivery at multiple time points, preferably outside the consultation. CONCLUSIONS: Decision making about fertility preservation is an important step in providing high-quality comprehensive cancer care and a priority for many survivors' optimal quality of life. Decision support interventions are needed to address gaps in care and help women quickly navigate toward an informed, values-congruent decision. Survivors and providers support developing a patient decision aid website to make information directly available to women outside of the consultation and to provide self-tailored content according to women's clinical characteristics and their information-seeking and deliberative styles.

An 11-Item Measure of User- and Human-Centered Design for Personal Health Tools (UCD-11): Development and Validation.

BACKGROUND: Researchers developing personal health tools employ a range of approaches to involve prospective users in design and development. OBJECTIVE: The aim of this paper was to develop a validated measure of the human- or user-centeredness of design and development processes for personal health tools. METHODS: We conducted a psychometric analysis of data from a previous systematic review of the design and development processes of 348 personal health tools. Using a conceptual framework of user-centered design, our team of patients, caregivers, health professionals, tool developers, and researchers analyzed how specific practices in tool design and development might be combined and used as a measure. We prioritized variables according to their importance within the conceptual framework and validated the resultant measure using principal component analysis with Varimax rotation, classical item analysis, and confirmatory factor analysis. RESULTS: We retained 11 items in a 3-factor structure explaining 68% of the variance in the data. The Cronbach alpha was .72. Confirmatory factor analysis supported our hypothesis of a latent construct of user-centeredness. Items were whether or not: (1) patient, family, caregiver, or surrogate users were involved in the steps that help tool developers understand users or (2) develop a prototype, (3) asked their opinions, (4) observed using the tool or (5) involved in steps intended to evaluate the tool, (6) the process had 3 or more iterative cycles, (7) changes between cycles were explicitly reported, (8) health professionals were asked their opinion and (9) consulted before the first prototype was developed or (10) between initial and final prototypes, and (11) a panel of other experts was involved. CONCLUSIONS: The User-Centered Design 11-item measure (UCD-11) may be used to quantitatively document the user/human-centeredness of design and development processes of patient-centered tools. By building an evidence base about such processes, we can help ensure that tools are adapted to people who will use them, rather than requiring people to adapt to tools.

User Involvement in the Design and Development of Patient Decision Aids and Other Personal Health Tools: A Systematic Review.

BACKGROUND: When designing and developing patient decision aids, guidelines recommend involving patients and stakeholders. There are myriad ways to do this. We aimed to describe how such involvement occurs by synthesizing reports of patient decision aid design and development within a user-centered design framework and to provide context by synthesizing reports of user-centered design applied to other personal health tools. METHODS: We included articles describing at least one development step of 1) a patient decision aid, 2) user- or human-centered design of another personal health tool, or 3) evaluation of these. We organized data within a user-centered design framework comprising 3 elements in iterative cycles: understanding users, developing/refining prototype, and observing users. RESULTS: We included 607 articles describing 325 patient decision aid projects and 65 other personal health tool projects. Fifty percent of patient decision aid projects reported involving users in at least 1 step for understanding users, 35% in at least 1 step for developing/refining the prototype, and 84% in at least 1 step for observing users' interaction with the prototype. In comparison, other personal health tool projects reported 91%, 49%, and 92%, respectively. A total of 74% of patient decision aid projects and 92% of other personal health tool projects reported iterative processes, both with a median of 3 iterative cycles. Preliminary evaluations such as usability or feasibility testing were reported in 66% of patient decision aid projects and 89% of other personal health tool projects. CONCLUSIONS: By synthesizing design and development practices, we offer evidence-based portraits of user involvement. Those wishing to further align patient decision aid design and development with user-centered design methods could involve users earlier, design and develop iteratively, and report processes in greater detail.

How do couples and spouses/partners consider fertility preservation decisions during cancer treatment planning? A qualitative analysis of dyadic decision making.

OBJECTIVE: This study assessed the needs and perspective of (1) couples and (2) spouses/partners when considering fertility preservation after a cancer diagnosis. RESEARCH APPROACH: Semi-structured interviews explored (1) couples' shared decision-making and (2) spouses'/partners' individual perspectives. PARTICIPANTS: Twelve female cancer survivors and their partners (spouses or domestic/romantic partners) (n = 24). METHODOLOGICAL APPROACH: Dyadic and individual interviews were conducted using a Decisional Needs Assessment interview guide. Thematic analysis identified key themes. FINDINGS: Couples reported making fertility preservation decisions like other major decisions, including prioritizing mutual satisfaction. Partners also reported concerns about patients' health, variable decision-making needs, and letting patients lead. Couples unanimously recommended fertility preservation consultations, and designing resources that provide information and assess needs for both patients and partners. INTERPRETATIONS: Patients and partners have shared and unique needs when facing fertility preservation decisions. IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS OR POLICY: Whenever feasible, psychosocial providers should assess and address couples' and partners' fertility preservation decision-making needs.

What Works in Implementing Patient Decision Aids in Routine Clinical Settings? A Rapid Realist Review and Update from the International Patient Decision Aid Standards Collaboration.

BACKGROUND: Decades of effectiveness research has established the benefits of using patient decision aids (PtDAs), yet broad clinical implementation has not yet occurred. Evidence to date is mainly derived from highly controlled settings; if clinicians and health care organizations are expected to embed PtDAs as a means to support person-centered care, we need to better understand what this might look like outside of a research setting. AIM: This review was conducted in response to the IPDAS Collaboration's evidence update process, which informs their published standards for PtDA quality and effectiveness. The aim was to develop context-specific program theories that explain why and how PtDAs are successfully implemented in routine healthcare settings. METHODS: Rapid realist review methodology was used to identify articles that could contribute to theory development. We engaged key experts and stakeholders to identify key sources; this was supplemented by electronic database (Medline and CINAHL), gray literature, and forward/backward search strategies. Initial theories were refined to develop realist context-mechanism-outcome configurations, and these were mapped to the Consolidated Framework for Implementation Research. RESULTS: We developed 8 refined theories, using data from 23 implementation studies (29 articles), to describe the mechanisms by which PtDAs become successfully implemented into routine clinical settings. Recommended implementation strategies derived from the program theory include 1) co-production of PtDA content and processes (or local adaptation), 2) training the entire team, 3) preparing and prompting patients to engage, 4) senior-level buy-in, and 5) measuring to improve. CONCLUSIONS: We recommend key strategies that organizations and individuals intending to embed PtDAs routinely can use as a practical guide. Further work is needed to understand the importance of context in the success of different implementation studies.

Development and Field Testing of a Long-Term Care Decision Aid Website for Older Adults: Engaging Patients and Caregivers in User-Centered Design.

BACKGROUND AND OBJECTIVES: Decisions about long-term care and financing can be difficult to comprehend, consider, and communicate. In a previous needs assessment, families in rural areas requested a patient-facing website; however, questions arose about the acceptability of an online tool for older adults. This study engaged older adults and family caregivers in (a) designing and refining an interactive, tailored decision aid website, and (b) field testing its utility, feasibility, and acceptability. RESEARCH DESIGN AND METHODS: Based on formative work, the research team engaged families in designing and iteratively revising paper drafts, then programmed a tailored website. The field test used the ThinkAloud approach and pre-/postquestionnaires to assess participants' knowledge, decisional conflict, usage, and acceptability ratings. RESULTS: Forty-five older adults, family members, and stakeholders codesigned and tested the decision aid, yielding four decision-making steps: Get the Facts, What Matters Most, Consider Your Resources, and Make an Action Plan. User-based design and iterative storyboarding enhanced the content, personal decision-making activities, and user-generated resources. Field-testing participants scored 83.3% correct on knowledge items and reported moderate/low decisional conflict. All (100%) were able to use the website, spent an average of 26.3 min, and provided an average 87.5% acceptability rating. DISCUSSION AND IMPLICATIONS: A decision aid website can educate and support older adults and their family members in beginning a long-term care plan. Codesign and in-depth interviews improved usability, and lessons learned may guide the development of other aging decision aid websites.

A Review of the Presentation of Overdiagnosis in Cancer Screening Patient Decision Aids.

Introduction. Patient decision aid (PDA) certification standards recommend including the positive and negative features of each option of the decision. This review describes the inclusion of concepts related to overdiagnosis and overtreatment, negative features often ambiguously defined, in cancer screening PDAs. Methods. Our process followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. We reviewed 1) current systematic reviews of decision aids, 2) the Ottawa Hospital Research Institute Decision Aid Library Inventory, and 3) a web-based, gray literature search. Two independent reviewers identified and evaluated PDAs using content analysis. Reviewers coded whether overdiagnosis/overtreatment was described as 1) detecting cancer that would not lead to death, 2) detecting cancer that would not cause symptoms, and/or 3) a potential harm or consequence of screening. Coding discrepancies were resolved through consensus. Results. A total of 904 records (e.g., articles, PDAs) were reviewed and 85 PDAs were identified: prostate (n = 36), breast (n = 26), lung (n = 10), colorectal (n = 10), and other (n = 3). Sixty-seven PDAs included concepts related to overdiagnosis/overtreatment; 57 (67.1%) used a term other than overdiagnosis/overtreatment, 23 (27.1%) used the specific term "overdiagnosis," and 13 (15.3%) used "overtreatment." PDAs described overdiagnosis/overtreatment as a potential harm or consequence of screening (n = 62) and/or a detection of a cancer that would not cause symptoms (n = 49). Thirty-six described overdiagnosis as the detection of a cancer that would not result in death. Twenty PDAs described the probabilities associated with overdiagnosis/overtreatment. Conclusions. Over three quarters of cancer screening PDAs addressed concepts related to overdiagnosis/overtreatment, yet terminology was inconsistent and few included probability estimates. Consistent terminology and minimum standards to describe overdiagnosis/overtreatment would help guide the design and certification of cancer screening PDAs.

Considering Breast Reconstruction after Mastectomy: A Patient Decision Aid Video and Workbook.

Women report difficulty understanding and personalizing breast reconstruction information during the complex and time-limited period of cancer treatment planning. Patient decision aids can help patients become well informed, form realistic expectations, prepare to communicate with the surgical team, and be more satisfied with their decision-making process. METHODS: We engaged patients, providers, and stakeholders in a user-centered design process to develop an online patient decision aid video and interactive workbook for breast reconstruction after mastectomy. The video and workbook introduce breast reconstruction and compare the risks and benefits of 3 key decisions: reconstruction versus no reconstruction, immediate versus delayed, and tissue- versus implant based. Pilot testing using cognitive interviews and pre-/postdecision aid questionnaires assessed acceptability, knowledge, and decision-making values. RESULTS: After viewing the decision aid, patients (n = 20) scored 97.5% correct on a knowledge test; however, the factors driving their decisions were varied. All (n = 40) patients and providers/stakeholders provided over 80% positive acceptability ratings. 97.5% said they would recommend the video and workbook to other women with breast cancer. CONCLUSIONS: The Considering Breast Reconstruction after Mastectomy patient decision aid video and workbook show potential for improving informed decision-making. Delivery before the initial plastic surgery consultation was well supported as a way to give women time to process the information and prepare to talk with the surgical team about their options. The Personal Decision Worksheet shows potential for assessing patients' knowledge and the factors driving their personal decision-making process.