Satisfaction with Fertility Preservation Decisions among Adolescent Males with Cancer: A Mixed Methods Study

Half of male childhood cancer survivors experience treatment-related fertility impairment, which can lead to distress. Survivors often regret forgoing fertility preservation (FP), and decisional dissatisfaction is associated with a lower quality of life. This mixed methods study examined short-term FP decisional satisfaction among families of male adolescents newly diagnosed with cancer who received an initial fertility consult and completed an FP values clarification tool. One-two months after the FP decision, thirty-nine families completed the Brief Subjective Decision Quality measure. Decisional satisfaction was compared for participants (mothers, fathers, adolescents) who did and did not attempt to bank. Semi-structured interviews included the following question: How do you/your family feel about the banking decision now/in the future? Decisional quality scores were moderate-high (M = 5.74–6.33 out of 7), with no significant differences between non-attempter (n = 15) and attempter (n = 24) families (adolescents: p = 0.83, d = 0.08; mothers: p = 0.18, d = 0.45; fathers: p = 0.32, d = 0.44). Three qualitative themes emerged among non-attempter families: (1) satisfaction with decision (50% of participants), (2) acceptance of decision (60%), and (3) potential for future regret (40%). Satisfaction with decision was the only theme identified in attempter families (93%). Quantitively, short-term decisional satisfaction was high regardless of the banking attempt. However, the qualitative findings suggest that the experiences of families who did not bank may be more nuanced, as several participants discussed a potential for future regret, highlighting the importance of ongoing support.

A Pregnancy Decision-Making Model: Psychological, Relational, and Cultural Factors Affecting Unintended Pregnancy

Empirical data from the past 50 years have illuminated some of the factors that influence pregnancy decision-making. Yet, formal models of pregnancy decision-making are uncommon and rarely incorporate cultural perspectives. In order to address this gap in the literature, we propose the Pregnancy Decision-Making Model (PDMM), a comprehensive model of the factors that are likely to affect pregnancy decisions in the context of unintended pregnancy, with special attention to relational and intersectional components of pregnancy decisions. The PDMM begins with three primary Evaluation factors: Evaluation of Capital, Evaluation of Values, and Evaluation of Narratives. Barriers to Access are proposed to be a key factor in limiting agency and autonomy and determining pregnancy outcomes. Social Influences are also hypothesized to influence Evaluation factors and their relationship with outcome variables, which include the Pregnancy Outcome, Decisional Certainty, and Decisional Satisfaction. As the PDMM is designed to be flexible in its prediction of a variety of outcomes, we consider a number of possible permutations of the model. Finally, we discuss the utility of the PDMM for inspiring future research, as well as the practical implications of the model.

Evaluation of a Video Decision Aid to Reduce Decisional Conflict in Physician Orders for Life-Sustaining Treatment (POLST) Decision-Making

Background/Objectives: Physician Orders for Life-Sustaining Treatment (POLST) is recommended as a preferred practice for advance care planning with seriously ill patients. Decision aids can assist patients in advance care planning, but there are limited studies on their use for POLST decisions. We hypothesized that after viewing a POLST video, decision aid participants would demonstrate increased knowledge and satisfaction and decreased decisional conflict. Design: Pre-and postintervention with no control group. Setting/Participants: Fifty community-dwelling adults aged 65 and older asked to complete a POLST based on a hypothetical condition. Interventions: Video decision aid for Sections A and B of the POLST form. Measurements: Pre- and postintervention participant knowledge, decisional satisfaction, decisional conflict, and acceptability of video decision aid. Results: Use of the video decision aid increased knowledge scores from 11.24 ± 2.77 to 14.32 ± 2.89, P < .001, improved decisional satisfaction 10.14 ± 3.73 to 8.70 ± 3.00, P = .001, and decreased decisional conflict 12 ± 9.42 to 8.15 ± 9.13, P < .001. All participants reported that they were comfortable using the video decision aid, that they would recommend it to others, and that it clarified POLST decisions. Conclusions: Participants endorsed the use of a POLST video decision aid, which increased their knowledge of POLST form options and satisfaction with their decisions, and decreased their decisional conflict in POLST completion. This pilot study provides preliminary support for the use of video decision aids for POLST decision-making. Future research should evaluate a decision aid for the entire POLST form and identify patient preferences for implementing POLST decision aids into clinical practice.

Decisional preferences and satisfaction with short-course radiation for breast cancer.

193 Background: Limited literature exists regarding preferences and decisional satisfaction for women who choose accelerated partial breast irradiation (APBI) in lieu of 6-7 weeks of radiation. This analysis provides long-term patient reported outcomes in women treated with APBI at one institution. Methods: Records of women treated primarily with balloon-based APBI (2005-2013) were reviewed after IRB approval. Women with recurrent disease or poor prognosis second primary cancer were excluded. Assessment of decisional factors important to the patient, as well as satisfaction and regret with treatment choices (Decisional Regret and Satisfaction Scales) were captured via mail or telephone. Results: In 141 women who met inclusion criteria, 83 participated. Median age at diagnosis was 62 years (SD = 9), and median time from RT to survey completion was 102 months (SD = 8). Histology was pre-invasive, (25%), invasive (52%), and combined invasive/pre-invasive (23%). The majority had estrogen/progesterone receptor positive disease. Factors that were important in decision making included convenience, physician recommendation, financial considerations, novelty of treatment, desire to avoid mastectomy, and recovery time. The majority (48%) reported convenience to be the single most important factor. Provider recommendation was the primary factor in decision making for 20% of women. Most women agreed that their choice was the right decision (96%) and most felt adequately informed (90%). The majority (92% and 90% respectively) of women agreed that their decision was consistent with their personal values and was the best decision for them personally. Decisional satisfaction was high (95%). Overall satisfaction with treatment choices was high: 84% and 10% reported being totally and somewhat satisfied respectively. The majority (90%) of women stated they would make the same treatment choice again. Conclusions: Decisional satisfaction remains high almost a decade after completion of short course radiation. Practitioners should consider patient values and preferences as part of shared decision making when determining type and duration of radiation as part of breast conservation therapy.

Prospective Study of Psychosocial Outcomes of Having Contralateral Prophylactic Mastectomy Among Women With Nonhereditary Breast Cancer

Purpose The incidence of contralateral prophylactic mastectomy (CPM) has continued to increase. We prospectively examined psychosocial outcomes before and up to 18 months after surgery in women who did or did not have CPM. Methods Women with unilateral, nonhereditary breast cancer completed questionnaires before and 1, 6, 12, and 18 months after surgery. Primary psychosocial measures were cancer worry and cancer-specific distress. Secondary measures were body image, quality of life (QOL), decisional satisfaction, and decisional regret. Results A total of 288 women (mean age, 56 years; 58% non-Hispanic white) provided questionnaire data, of whom 50 underwent CPM. Before surgery, women who subsequently received CPM had higher cancer distress ( P = .04), cancer worry ( P < .001), and body image concerns ( P < .001) than women who did not have CPM. In a multivariable repeated measures model adjusted for time, age, race/ethnicity, and stage, CPM was associated with more body image distress ( P < .001) and poorer QOL ( P = .02). There was a significant interaction between time point and CPM group for cancer worry ( Pinteraction < .001), suggesting that CPM patients had higher presurgery cancer worry, but their postsurgery worry decreased over time and was similar to the worry of patients who did not have CPM. QOL was similar between CPM groups before surgery but declined 1 month after surgery and remained lower than patients who did not have CPM after surgery ( Pinteraction = .05). Conclusion These results may facilitate informed discussions between women and their physicians regarding CPM. Fear and worry may be foremost concerns at the time surgical decisions are made, when women may not anticipate the adverse future effect of CPM on body image and QOL.

Racial and Ethnic Disparities in the Use of Postmastectomy Breast Reconstruction: Results From a Population- Based Study

Purpose There is concern that minority women have limited access to breast reconstruction. We described patterns of use, experiences with clinicians, and patients' satisfaction with treatment decisions for women of different race/ethnicities. Methods A total of 3,252 patients with breast cancer from Los Angeles and Detroit Surveillance, Epidemiology, and End Results registries were surveyed near the time of diagnosis (n = 2,260, response rate 72.2%). The primary outcomes were receipt of reconstruction, access to information about reconstruction, and decisional satisfaction. The primary independent variable was race/ethnicity (white, African American [AA], highly acculturated Latina [Latina-high], and less acculturated Latina [Latina-low]). Control variables included other sociodemographic and clinical factors. χ2 and multivariate logistic regression were used for the analyses. Results Receipt of reconstruction varied significantly by patient race/ethnicity—40.9% of whites, 33.5% of AAs, 41.2% of Latina-high, and only 13.5% of Latina-low (P < .001)—and persisted when we controlled for demographic and clinical factors. Minority women were significantly less likely than whites to see a plastic surgeon before initial surgery and were more likely to desire more information about reconstruction (17.0% of whites v 27.0% of AAs, 30.0% of Latina-high, and 55.9% of Latina-low; P < .001). Decisional satisfaction was lowest among minority women without reconstruction (P < .001). Conclusion Minority women, particularly less acculturated Latinas, had low receipt of breast reconstruction, which may be related to limited information about the procedure and less access to plastic surgeons. Greater desire for information and lower satisfaction with surgical decisions among these patients motivate greater attention to treatment support for these patients.

Latina patient perspectives about informed decision making for surgical breast cancer treatment

6544 Background: Although increasing informed decision making has been identified as a mechanism for reducing disparities in breast cancer treatment outcomes, little is known about these issues from the Latina perspective. Methods: 2,030 women with non- metastatic breast cancer diagnosed from 8/05–5/06 and reported to the Los Angeles County SEER registry were identified and mailed a survey shortly after receipt of surgical treatment. Latina and African American women were over-sampled. Survey data were merged to SEER clinical data. We report results on a 50% respondent sample (N=742) which will be updated based on a final respondent sample of 1,400 patients (projected response rate, 72%). Dependent variables were patient reports of how decisions were made (doctor-based, shared, patient-based); their preferred amount of decisional involvement; and two 5-item scales measuring satisfaction with decision-making and decisional regret. Results: 32% of women were white, 28% African American (AA), 20% Latina-English speaking (L-E), and 20% Latina-Spanish speaking (L- SP). About 28% of women in each ethnic group reported a surgeon-based, 33% a shared, and 38% a patient-based surgical treatment decision. L- SP women reported wanting more involvement in decision making more often than white, AA or L-E women (16% vs. 4%, 5%, 5%, respectively, p<0.001). All minority groups were less likely than white women to have high decisional satisfaction with L-SP women having the lowest satisfaction (w-74%, AA-63%, L-E-56%, L-SP-31%, p<0.001). L-SP women were more likely than white, AA or L-E women to have decisional regret (35% vs. 7%, 15%, 16%, respectively, p<0.001). Multivariate regression showed that Latina ethnicity and low literacy were independently associated with both low decisional satisfaction and high decisional regret (p<0.001). Conclusions: Latina women, especially Spanish speakers, report more dissatisfaction with the breast cancer surgical treatment decision-making process than other racial/ethnic groups. These results highlight the challenges to improving breast cancer treatment informed decision making for Latina women. Future interventions to improve satisfaction with the decision process should be tailored to ethnicity and acculturation. No significant financial relationships to disclose.