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Purpose: To (i) assess how and to what extent online communities are used among breast cancer survivors (BCS) as a source of social support, (ii) describe the kind of support BCS access through online communities, and (iii) explore how these communities foster social support for BCS that promotes well-being and reduces the challenges of survivorship., Methods: We conducted a scoping review. A professional librarian performed a comprehensive search in multiple databases from January 2010 to May 2023. The review process adhered to the Johana Briggs Institute's method guidelines and the PRISMA-ScR reporting system., Results: Fifteen studies were included. Participants used social media, cancer support communities, message boards, or websites for information and emotional support. Qualitative findings resulted in four themes: to reassure; to empower; to promote equity, diversity, and inclusion; and to demonstrate for BCS the drawbacks of online support., Conclusions: We underscore that a variety of internet websites and social media platforms are valuable for and appreciated by BCS, especially as a source of social support and human connectedness. Our study raises the existing gap in cultural/ethnic representation in this field and shows that institutional and organizational efforts are needed to address gaps in information regarding access to social support for multiethnic BCS women., Implications for Cancer Survivors: This data synthesis will empower the BCS community by sharing how they can strengthen and support their peers and community via their participation in online communities that connect and support cancer survivors in healthcare spaces., (© 2024. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Introduction: Financial toxicity associated with treatments for metastatic prostate cancer remains poorly defined. We sought to understand aspects of financial toxicity not captured in a commonly employed financial toxicity questionnaire and identify potential interventions to help alleviate financial toxicity through a convergent mixed methods approach., Methods: Patients seen at our institution's advanced prostate cancer clinic were approached for completion of the Comprehensive Score for Financial Toxicity (COST-FACIT) questionnaire (quantitative analysis). A maximal variation purposive sample was chosen to participate in focus group discussions (qualitative analysis). Conventional content analysis was performed using an inductive approach. COST-FACIT scores were compared between patients experiencing high and low financial toxicity using Wilcoxon rank sum test., Results: Three themes were identified through qualitative analysis: (1) workload, (2) coping strategies, and (3) communication. We found alignment with the existing theory of financial capacity across our findings. Two unique aspects of financial toxicity emerged that were not assessed quantitatively and deemed to be significant. Specifically, cost transparency (including health care teams knowledgeable about and willing to discuss costs) and inclusion of informal caregivers in financial toxicity screening and decision-making may guide future interventions aimed at limiting financial toxicity in this population., Conclusions: Prolonged treatment courses involving multiple lines of treatment with varying costs result in distinct financial toxicity components for patients with metastatic prostate cancer that are not assessed with COST-FACIT. Improving cost transparency, health care team knowledge and engagement, and providing resources to support informal caregivers may have a significant impact on the financial toxicity experienced by these patients.

Objective: To explore how costs of care are discussed in real clinical encounters and what humanistic elements support them., Methods: A qualitative thematic analysis of 41 purposively selected transcripts of video-recorded clinical encounters from trials run between 2007 and 2015. Videos were obtained from a corpus of 220 randomly selected videos from 8 practice-based randomized trials and 1 pre-post prospective study comparing care with and without shared decision making (SDM) tools., Results: Our qualitative analysis identified two major themes: the first, Space Needed for Cost Conversations, describes patients' needs regarding their financial capacity. The second, Caring Responses, describes humanistic elements that patients and clinicians can bring to clinical encounters to include good quality cost conversations., Conclusion: Our findings suggest that strengthening patient-clinician human connections, focusing on imbalances between patient resources and burdens, and providing space to allow potentially unexpected cost discussions to emerge may best support high quality cost conversations and tailored care plans., Practice Implications: We recommend clinicians consider 4 aspects of communication, represented by the mnemonic ABLE: Ask questions, Be kind and acknowledge emotions, Listen for indirect signals and (discuss with) Every patient. Future research should evaluate the practicality of these recommendations, along with system-level improvements to support implementation of our recommendations., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2022. Published by Elsevier B.V.)

Objective: To investigate the impact of cost conversations occurring with or without the use of encounter shared decision-making (SDM) tools in medication adherence., Patients and Methods: Using a coding scheme that included the occurrence and characteristics of cost conversation, we analyzed a randomly selected sample of 169 video recordings of clinical encounters. These videos were obtained during the conduct of practice-based randomized clinical trials comparing care with and without SDM tools for patients with diabetes, osteoporosis, and depression. Medication adherence was described in 2 ways: as a binary (yes/no) outcome, in which the patient met at least 80% adherence, or as a continuous variable, which was the percent of days that the patient adhered to their medication. The secondary analysis took place in 2018 from trials that ran between 2007 and 2015., Results: Most patients were White (155, 93.4%), educated (104, 63.4% completed college), middle-aged (mean age, 58 years), female (104, 61.5%), and from diabetes (86, 50.9%), depression (43, 25.4%), and osteoporosis (40, 23.7%) trials. Cost conversations occurred in 119 clinical encounters (70%) and were more frequent in those encounters in which SDM tools were used ( P =.03). Furthermore, 97 (57.4%) of the participants reported more than 80% medication adherence and 70.3±29.34 percentage of days with adherent medication of 70 days. In the multiple regression model, the only factor associated with adherence (binary or continuous) was the condition of the trial in which people participated. For the participants who had cost conversations, the use of an SDM tool, their sex, the nature of cost conversation (direct or indirect), the nature of cost concerns (treatment or patient issue), and the clinician-offered strategies (yes or no) were not associated with adherence., Conclusion: In this videographic analysis of SDM practice-based clinical trials, cost conversations were not associated with the general measures of medication adherence. Future studies should assess whether a tailored cost conversation intervention would impact the cost-related nonadherence among patients., (© 2022 The Authors.)

Objective: To evaluate how the use of a within-encounter SDM tool (compared to usual care in a randomized trial) contributes to care plans that make sense to patients with atrial fibrillation considering anticoagulation., Methods: In a planned subgroup of the trial, 123 patients rated post-encounter how much sense their decided-upon care plan made to them and explained why. We explored how sense ratings related to observed patient involvement (OPTION12), patient's decisional conflict, and adherence to their plan based on pharmacy records. We analyzed patient motives using Burke's pentad., Results: Plan sensibility was similarly high in both arms (Usual care n = 62: mean 9.4/10 (SD 1.0) vs SDM tool n = 61: 9.2/10 (SD 1.5); p = .8), significantly and weakly correlated to decisional conflict (rho=-0.28, p = .002), but not to OPTION12 or adherence. Plans made sense to most patients given their known efficacy, safety and what is involved in implementing them., Conclusion: Adding an effective intervention to promote SDM did not affect how much, or why, care plans made sense to patients receiving usual care, nor patient adherence to them., Practice Implications: Evaluating the extent to which care plans make sense can improve SDM assessments, particularly when SDM extends beyond selecting from a menu of options., (Copyright © 2021 The Authors. Published by Elsevier B.V. All rights reserved.)

Purpose: Access to health care is a long-standing concern for rural patients; however, administrative measures fail to capture the subjective patient experience of accessing health care. The purpose of this review was to synthesize the qualitative literature on patient and caregiver experiences of accessing health care services for chronic disease management among US residents of rural areas., Methods: We searched Embase, MEDLINE, PsycInfo, CINAHL, and Scopus to identify qualitative studies published during 2010-2019. A thematic synthesis approach was used to analyze findings from included studies., Results: A total of 62 studies involving 1,354 unique participants were included. The largest share of studies (24.2%) was focused on the experience of patients with cancer, followed by behavioral health (16.1%), HIV and AIDS (14.5%), and diabetes (12.9%). We identified 4 primary analytic themes of barriers and facilitators associated with the experience of accessing health care services for chronic disease management in rural areas: (1) navigating the rural environment, (2) navigating the health care system, (3) financing chronic disease management, and (4) rural life (ie, common elements of a distinct "rural" way of thinking and behaving)., Conclusions: In this comprehensive review, we found that important cultural, structural, and individual factors influenced the rural patient's experience of health care access and use, including barriers and facilitators posed by geographic and built environments, and distinct rural mores. Our findings can inform policies and programs that both facilitate structural aspects of access and include culturally appropriate interventions. VISUAL ABSTRACT ., (© 2022 Annals of Family Medicine, Inc.)

Background: Approximately 750,000 people in the U.S. live with end-stage kidney disease (ESKD); the majority receive dialysis. Despite the importance of adherence to dialysis, it remains suboptimal, and one contributor may be patients' insufficient capacity to cope with their treatment and illness burden. However, it is unclear what, if any, differences exist between patients reporting high versus low treatment and illness burden., Methods: We sought to understand these differences using a mixed methods, explanatory sequential design. We enrolled adult patients receiving dialysis, including in-center hemodialysis, home hemodialysis, and peritoneal dialysis. Descriptive patient characteristics were collected. Participants' treatment and illness burden was measured using the Illness Intrusiveness Scale (IIS). Participants scoring in the highest quartile were defined as having high burden, and participants scoring in the lowest quartile as having low burden. Participants in both quartiles were invited to participate in interviews and observations., Results: Quantitatively, participants in the high burden group were significantly younger (mean = 48.4 years vs. 68.6 years respectively, p = <0.001). No other quantitative differences were observed. Qualitatively, we found differences in patient self-management practices, such as the high burden group having difficulty establishing a new rhythm of life to cope with dialysis, greater disruption in social roles and self-perception, fewer appraisal focused coping strategies, more difficulty maintaining social networks, and more negatively portrayed experiences early in their dialysis journey., Conclusions and Relevance: Patients on dialysis reporting the greatest illness and treatment burden have difficulties that their low-burden counterparts do not report, which may be amenable to intervention., Competing Interests: The authors have declared that no competing interests exist.

Objective: To understand the impact of cost conversations on the following decision-making outcomes: patients' knowledge about their conditions and treatment options, decisional conflict, and patient involvement., Patients and Methods: In 2020 we performed a secondary analysis of a randomly selected set of 220 video recordings of clinical encounters from trials run between 2007 and 2015. Videos were obtained from eight practice-based randomized trials and one pre-post-prospective study comparing care with and without shared decision-making (SDM) tools., Results: The majority of trial participants were female (61%) and White (86%), with a mean age of 56, some college education (68%), and an income greater than or equal to $40,000 per year (75%), and who did not participate in an encounter aided by an SDM tool (52%). Cost conversations occurred in 106 encounters (48%). In encounters with SDM tools, having a cost conversation lead to lower uncertainty scores (2.1 vs 2.6, P =.02), and higher knowledge (0.7 vs 0.6, P =.04) and patient involvement scores (20 vs 15.7, P =.009) than in encounters using SDM tools where cost conversations did not occur. In a multivariate model, we found slightly worse decisional conflict scores when patients started cost conversations as opposed to when the clinicians started cost conversations. Furthermore, we found higher levels of knowledge when conversations included indirect versus direct cost issues., Conclusion: Cost conversations have a minimal but favorable impact on decision-making outcomes in clinical encounters, particularly when they occurred in encounters aided by an SDM tool that raises cost as an issue., (© 2021 The Authors.)

Objectives: Despite increasing focus on individualised diabetes management, current diabetes quality measures are based on meeting generic haemoglobin A 1c thresholds and do not reflect considerations of clinical complexity, hypoglycaemic susceptibility or treatment burden. Our team observed a multidisciplinary stakeholder panel tasked with informing an appropriate diabetes therapy indicator (ADTI) and analysed their deliberations, seeking to understand what constitutes appropriate diabetes therapy and how it can be captured using an operational quality indicator. We focused specifically on factors the panel valued in an ideal indicator, how they defined appropriateness and how they thought an indicator of appropriateness could be operationalised ., Design: Qualitative study examining Delphi panel deliberations as it iteratively refined the ADTI., Participants and Methods: The 12-member panel was comprised of clinicians (endocrinology, primary care, geriatrics), pharmacists, nurses, researchers, and representatives of public and private health plans. It met for four teleconference calls and deliberated asynchronously using semi-structured questionnaires following each call to develop the ADTI. These semistructured questionnaires, as well as the meeting minutes, were then analysed using an inductive thematic approach., Results: We identified three themes in panellist discussions that represented the core value systems underpinning the indicator and its formation: (1) promoting individualised, evidence-based and equitable care; (2) balancing autonomy and prescriptiveness in clinical decision-making; and (3) ensuring an accurate, reliable and practical indicator. These three principles were operationalised into definitions of treatment intensity and clinical complexity, and yielded an indicator that participants judged both fair and effective., Conclusions: Better understanding of what multidisciplinary stakeholders perceive as appropriate diabetes management can help develop quality indicators that are patient-centred, evidence-based, equitable and pragmatic across a range of clinical settings., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Objective: To determine how shared decision-making (SDM) tools used during clinical encounters that raise cost as an issue impact the incidence of cost conversations between patients and clinicians., Patients and Methods: A randomly selected set of 220 video recordings of clinical encounters were analyzed. Videos were obtained from eight practice-based randomized clinical trials and one quasi-randomized clinical trial (pre- and post-) comparing care with and without SDM tools. The secondary analysis took place in 2018 from trials ran between 2007 and 2015., Results: Most patient participants were white (85%), educated (38% completed college), middle-aged (mean age 56 years), and female (61%). There were 105 encounters with and 115 without the SDM tool. Encounters with SDM tools were more likely to include both general cost conversations (62% vs 36%, odds ratio [OR]: 9.6; 95% CI: 4 to 26) as well as conversations on medication costs specifically (89% vs 51%, P =.01). However, clinicians using SDM tools were less likely to address cost issues during the encounter (37% vs 51%, P =.04). Encounters with patients with less than a college degree were also associated with a higher incidence of cost conversations., Conclusion: Using SDM tools that raise cost as an issue increased the occurrence of cost conversations but was less likely to address cost issues or offer potential solutions to patients' cost concerns. This result suggests that SDM tools used during the consultation can trigger cost conversations but are insufficient to support them., (© 2020 Mayo Foundation for Medical Education and Research. Published by Elsevier Inc.)

Background: Reflecting ("stop-and-think") before rating may help patients consider the quality of shared decision making (SDM) and mitigate ceiling/halo effects that limit the performance of self-reported SDM measures., Methods: We asked a diverse patient sample from the United States to reflect on their care before completing the 3-item CollaboRATE SDM measure. Study 1 focused on rephrasing CollaboRATE items to promote reflection before each item. Study 2 used 5 open-ended questions (about what went well and what could be improved upon, signs that the clinician understood the patient's situation, how the situation will be addressed, and why this treatment plan makes sense) to invite reflection before using the whole scale. A linear analogue scale assessed the extent to which the plan of care made sense to the patient., Results: In Study 1, 107 participants completed surveys (84% response rate), 43 (40%) rated a clinical decision of which 27 (63%) after responding to reflection questions. Adding reflection lowered CollaboRATE scores ("less" SDM) and reduced the proportion of patients giving maximum (ceiling) scores (not statistically significant). In Study 2, 103 of 212 responders (49%) fully completed the version containing reflection questions. Reflection did not significantly change the distribution of CollaboRATE scores or of top scores. Participants indicated high scores on the sense of their care plan (mean 9.7 out of 10, SD 0.79). This rating was weakly correlated with total CollaboRATE scores (rho = .4, P = .0001)., Conclusion: Reflection-before-quantification interventions may not improve the performance of patient-reported measures of SDM with substantial ceiling/halo effects., (© 2019 The Authors Health Expectations published by John Wiley & Sons Ltd.)