Dataset Information

The evolution of regret: decision-making for parents of children with cancer.

ABSTRACT:

Purpose

Parents of children with cancer make treatment decisions in highly emotional states while feeling overwhelmed with information. In previous work, 1 in 6 parents demonstrated heightened decisional regret regarding treatment at diagnosis. However, it is unclear how regret evolves over time. We aimed to determine whether parents of children with cancer experience decisional regret over time and to identify parental characteristics and clinician behaviors associated with longitudinal regret.

Methods

Prospective, questionnaire-based cohort study of parents of children with cancer at two academic pediatric hospitals. Parents reported decisional regret at diagnosis, 4 months, and 12 months.

Results

At baseline, 13% of parents (21/158) reported heightened regret, 11% (17/158) at 4 months (p?=?0.43, McNemar's test relative to baseline), and 11% (16/158) at 12 months (p?=?0.35 relative to baseline and p?=?0.84 relative to 4 months). In multivariable analysis using generalized estimating equations adjusted for the time point of survey completion, heightened regret was associated with non-white race/ethnicity (OR 11.57, 95% CI 3.53 to 41.05, p?ConclusionsA small, significant proportion of parents experience heightened regret throughout the first year of their child's cancer treatment; non-white parents are at higher risk. Effective communication may protect against regret.

SUBMITTER: Sisk BA

PROVIDER: S-EPMC6923624 | biostudies-literature | 2020 Mar

REPOSITORIES: biostudies-literature

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Publications

The evolution of regret: decision-making for parents of children with cancer.

Sisk Bryan A BA Kang Tammy I TI Mack Jennifer W JW

Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer 20190620 3

<h4>Purpose</h4>Parents of children with cancer make treatment decisions in highly emotional states while feeling overwhelmed with information. In previous work, 1 in 6 parents demonstrated heightened decisional regret regarding treatment at diagnosis. However, it is unclear how regret evolves over time. We aimed to determine whether parents of children with cancer experience decisional regret over time and to identify parental characteristics and clinician behaviors associated with longitudinal ...[more]

PMID: 31297592

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Project description:Objectives: The mainstream position on regret in psychological literature is that its necessary conditions are agency and responsibility, that is, to choose freely but badly. Without free choice, other emotions, such as disappointment, are deemed to be elicited when the outcome is worse than expected. In two experiments, we tested the opposite hypothesis that being forced by external circumstances to choose an option inconsistent with one's own intentions is an important source of regret and a core component of its phenomenology, regardless of the positivity/negativity of the post-decision outcome. Along with regret, four post-decision emotions - anger toward oneself, disappointment, anger toward circumstances, and satisfaction - were investigated to examine their analogies and differences to regret with regard to antecedents, appraisals, and phenomenological aspects. Methods: Through the scenario methodology, we manipulated three variables: choice (free/forced), outcome (positive/negative), and time (short/long time after decision-making). Moreover, we investigated whether responsibility, decision justifiability, and some phenomenological aspects (self-attribution, other attribution, and contentment) mediated the effect exerted by choice, singularly or in interaction with outcome and time, on the five emotions. Each study was conducted with 336 participants, aged 18-60. Results: The results of both studies were similar and supported our hypothesis. In particular, regret elicited by forced choice was always high, regardless of the valence of outcome, whereas free choice elicited regret was high only with a negative outcome. Moreover, regret was unaffected by responsibility and decision justifiability, whereas it was affected by the three phenomenological dimensions. Conclusion: Our results suggest that (1) the prevailing theory of regret is too binding, since it posits as necessary some requirements which are not; (2) the antecedents and phenomenology of regret are broader than it is generally believed; (3) decision-making produces a complex emotional constellation, where the different emotions, singularly and/or in combination, constitute the affective responses to the different aspects of decision-making.

Project description:ImportanceAlopecia areata (AA) is an autoimmune disorder of hair loss with a complex and evolving treatment landscape, making it an ideal setting for shared decision-making (SDM) between patients and physicians. Given the varying efficacy, experience, and risks of treatments for AA, we sought to evaluate patient preferences for SDM and the association of SDM with decisional regret.ObjectiveTo evaluate patient preferences for SDM and the association of SDM with decisional regret.Design, setting, and participantsA cross-sectional online survey using the validated SDMQ9 scale for shared decision-making and Decisional Regret Scale (DRS) was distributed using the National Alopecia Areata Foundation (NAAF) with the aim of assessing (1) patient preferences in SDM when making treatment decisions, (2) how patients perceived the last decision to have been made, (3) which components of SDM were incorporated into the last decision, and (4) decisional regret related to their last treatment decision. The survey was distributed from July 12, 2021, to August 2, 2021, and data analysis occurred from October 2021 to March 2022.Main outcomes and measuresPrimary outcomes included (1) patient preferences in incorporation of SDM, (2) how patients made their most recent treatment decision, (3) which components of SDM were incorporated into their most recent treatment decision measured with the validated SDMQ9, and (4) an assessment of decisional regret in relation to SDM components and the most recent treatment modality used by the patient as measured by the validated DRS.ResultsOf 1387 individuals who initiated the survey, 1074 completed it and were included in the analysis (77.4% completion rate). Overall, 917 respondents were women (85.4%). There were 5 American Indian or Alaska Native respondents (0.5%), 33 were Asian (3.1%), 112 Black or African American (10.4%), 836 White (77.8%), and 36 were multiracial (3.4%) or other (36 [3.4%]). The mean age (SD) was 49.3 (15.4) years. Most respondents preferred making the final treatment decision themselves after considering their physician's opinion (503 [46.8%]). Of those who preferred to make treatment decisions using SDM, most made the last AA treatment decision with their physician (596 [55%]; 95% CI, 53%-58%; P < .001). The components of SDM implemented by the patients' dermatologists most identified were the physician "explained the advantages and disadvantages of treatment options" (472 [44%]), and the physician "asked me which treatment option I prefer" (494 [45.9%]). Incorporation of SDM by physicians was generally associated with decreased decisional regret (all ORs with 95% CIs greater than 1.1; P < .01). The treatments associated with the lowest decisional regret were Janus kinase (JAK) inhibitors, followed by biologics, and deciding not to treat; whereas, the highest decisional regret was reported with anthralin and minoxidil.Conclusions and relevanceThe findings of this cross-sectional survey study suggest that patients with AA prefer to make treatment decisions with their dermatologist using SDM. When SDM is used, patients report less decisional regret, indicating that SDM may help improve the patient-reported quality of treatment decisions. Newer, more efficacious therapies such as JAK inhibitors may be related to lower decisional regret. Future studies should seek to devise solutions to implement SDM as the AA treatment landscape continues to evolve.

Project description:Purpose Breast cancer patients often engage in shared decision-making to select an individualized treatment regimen from multiple options. However, dissatisfaction with treatment outcomes can lead to decision regret. We evaluated decision regret and physical and psychological well-being among breast cancer patients who underwent adjuvant radiotherapy and explored their associations with patient, tumor, treatment, and symptom characteristics. Methods This cross-sectional study involved retrospectively obtaining clinical data and data collected through interviews carried out as part of regular long-term medical aftercare. Decision regret regarding the radiotherapy was assessed using the Ottawa Decision Regret Scale, physical and psychological well-being were assessed using the PROMIS Global Health-10 questionnaire, and patients were asked about their treatment outcomes and symptoms. The questionnaire was administered 14 months to 4 years after completion of radiotherapy. Results Of the 172 included breast cancer patients, only 13.9% expressed high decision regret, with most patients expressing little or no decision regret. More decision regret was associated with volumetric modulated arc therapy, chest wall irradiation, use of docetaxel as a chemotherapy agent, lymphangiosis carcinomatosa, new heart disease after radiotherapy, and lower psychological well-being. Conclusion Although most patients reported little or no decision regret, we identified several patient, treatment, and symptom characteristics associated with more decision regret. Our findings suggest that psychological well-being influences patients’ satisfaction with therapy decisions, implying that practitioners should pay special attention to maintaining psychological well-being during shared decision-making and ensuring that psychological assessment and treatment is provided after cancer therapy to deal with long-term effects of radiotherapy. Highlights • · Breast cancer patients often engage in shared decision-making to select an individualized treatment regimen.• · Dissatisfaction with treatment outcomes may lead to decision regret and psychological well-being.• · Decision regret was associated with VMAT, chest wall irradiation, docetaxel usage, inflammatory carcinoma.• · Practitioners should pay special attention to maintaining psychological well-being during shared decision-making.

Dataset Information

The evolution of regret: decision-making for parents of children with cancer.

Purpose

Methods

Results

Publications

The evolution of regret: decision-making for parents of children with cancer.

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