Breast Cancer Surgery: A Qualitative Exploration of Concerns Over Time.

INTRODUCTION: As outcomes for breast cancer patients improve, addressing the side effects and distress of treatment can optimize survivorship. Although distress in breast cancer is well known in literature, there is a lack of information on how these concerns change through the phases of the cancer care continuum. Therefore, this study investigates the longitudinal trajectory of worry in patients with nonmetastatic breast cancer. METHODS: Female patients with newly diagnosed stage I-III breast cancer comprised a mixed-methods, longitudinal study at a cancer center from June 2019 to June 2023. Patients completed an open-ended survey regarding their top three concerns. Responses were obtained before surgery and two weeks, three, six, nine months, and one year postoperatively. Responses were qualitatively coded and analyzed to determine themes of cancer-related distress. RESULTS: Participants (n = 262) were aged an average 57.53 y (±12.54), 65.8% had stage I disease at diagnosis, and 91.1% were White. Responses revealed that patients' top three sources of concerns varied by treatment phase. Overall, patients were worried about their cancer diagnosis and the risk of recurrence. Preoperatively, patients were worried about treatment timeline, while postoperative concerns transitioned to physical appearance and surgical side effects. CONCLUSIONS: Breast cancer patients consistently reported worries about cancer diagnosis, recurrence, and metastasis as well as the side effects and fear of treatments. However, patient worry appeared to be intrinsically linked with their treatment phase. Therefore, support and interventions should be catered to reflect the changing patterns of patients' sources of distress to optimize breast cancer patients' quality of life.

The Natural History of Disability and Caregiving Before and After Long-Term Care Entry.

Importance: Many older persons move into long-term care facilities (LTCFs) due to disability and insufficient home caregiving options. However, the extent of disability and caregiving provided around the time of entry is unknown. Objective: To quantitatively describe disability and caregiving before and after LTCF entry, comparing nursing home (NH), assisted living (AL), and independent living (IL) entrants. Design, Setting, and Participants: A longitudinal cohort study using prospectively collected annual data from the National Health and Aging Trends Study from 2011 to 2020 including participants in the continental US. Overall, 932 community-dwelling Medicare beneficiaries entering LTCF from 2011 to 2019 were included. Entry into LTCF was set as t = 0, and participant interviews from 4 years before and 2 years after were used. Main Outcomes and Measures: Prevalence of severe disability (severe difficulty or dependence in ≥3 activities of daily living), prevalence of caregivers, and median weekly caregiving hours per entrant, using weighted mixed-effects regression against time as linear spline. Results: At entry, mean (SD) age was 84 (8.4) years, 609 (64%, all percentages survey weighted) were women, 143 (6%) were Black, 29 (3%) were Hispanic, 30 (4%) were other (other race and ethnicity included American Indian, Asian, Native Hawaiian, and other), and 497 (49%) had dementia. 349 (34%) entered NH, 426 (45%) entered AL, and 157 (21%) entered IL. Overall, NH and AL entry were preceded by months of severe disability and escalating caregiving. Before entry, 49% (95% CI, 29%-68%) of NH entrants and 10% (95% CI, 3%-24%) of AL entrants had severe disability. Most (>97%) had at least a caregiver, but only one-third (NH, 33%; 95% CI, 20%-50%; AL, 33%; 95% CI, 24%-44%) had a paid caregiver. Median care was 27 hours weekly (95% CI, 18-40) in NH entrants and 18 (95% CI, 14-24) in AL entrants. On NH and AL entry, severe disability rose to 89% (95% CI, 82%-94%) and 28% (95% CI, 16%-44%) on NH and AL entry and was 66% (95% CI, 55%-75%) 2 years after entry in AL residents. Few IL entrants (<2%) had severe disability and their median care remained less than 7 hours weekly before and after entry. Conclusions: This study found that persons often enter NHs and ALs after months of severe disability and substantial help at home, usually from unpaid caregivers. Assisted living residents move when less disabled, but approach levels of disability similar to NH entrants within 2 years. Data may help clinicians understand when home supports approach a breaking point.

The Economic Burden of Heart Failure with Reduced Ejection Fraction: Living Longer but Poorer?

Treatment of heart failure with reduced ejection fraction (HFrEF) has benefitted from a proliferation of new medications and devices. These treatments carry important clinical benefits, but also come with costs relevant to payers, providers, and patients. Patient out-of-pocket costs have been implicated in the avoidance of medical care, nonadherence to medications, and the exacerbation of health care disparities. In the absence of major health care policy and payment redesign, high-quality HFrEF care delivery requires transparent integration of cost considerations into system design, patient-clinician interactions, and medical decision making.

Time for More Support? Stakeholder Engagement for a Long-Term Care Planning Dementia Decision Aid Prototype.

Clinical decision aids around long-term care can help support persons living with dementia (PLWD), family care partners, and healthcare providers navigate current and future care decisions. This study describes the iterative development of a long-term care planning dementia decision aid and explores care partner and geriatric providers' insights regarding its acceptability and usability. Using a convergent parallel mixed methods design, we gathered surveys and completed interviews with 11 care partners and 11 providers. The quantitative and qualitative data were then converged, resulting in four findings: (1) helpfulness of the decision aid in supporting future care planning; (2) versatility of the decision aid in practice; (3) preferences for structure and content of the decision aid; and (4) perceived shortcomings of the decision aid in decision making. Future work should continue to refine the decision aid, pilot implementation, and evaluate potential effects on decision making as part of dementia care.

No One-Size-Fits-All: Sexual Health Education Preferences in Patients with Breast Cancer.

BACKGROUND: Using explanatory mixed methods, we characterize the education that patients with breast cancer received about potential sexual health effects of treatment and explore preferences in format, content, and timing of education. PATIENTS AND METHODS: Adult patients with stage 0-IV breast cancer seen at an academic breast center during December 2020 were emailed questionnaires assessing sexual health symptoms experienced during treatment. Patients interested in further study involvement were invited to participate in semistructured interviews. These interviews explored sexual health education provided by the oncology team and patient preferences in content, format, and timing of education delivery. RESULTS: Eighty-seven (32%) patients completed the questionnaire. Most patients reported decreased sexual desire (69%), vaginal dryness (63%), and less energy for sexual activity (62%) during/after treatment. Sixteen patients participated in interviews. Few women reported receiving information about potential sexual effects of breast cancer treatment; patients who did reported a focus on menopausal symptoms or fertility rather than sexual function. Regarding preferences in format, patients were in favor of multiple options being offered rather than a one-size-fits-all approach, with particular emphasis on in-person options and support groups. Patients desired education early and often throughout breast cancer treatment, not only about sexual side effects but also on mitigation strategies, sexual function, dating and partner intimacy, and body image changes. CONCLUSION: Few patients received information about the sexual health effects of breast cancer treatment, though many experienced symptoms. Potential adverse effects should be discussed early and addressed often throughout treatment, with attention to strategies to prevent and alleviate symptoms and improve overall sexual health.

Early Trajectories of Patient Reported Outcomes in Breast Cancer Patients Undergoing Lumpectomy Versus Mastectomy.

PURPOSE: This study was designed to: (1) characterize longitudinal patient-reported outcomes (PROs) between breast cancer patients undergoing lumpectomy and mastectomy and (2) compare return to baseline scores at 3 months and 6 months postoperatively. METHODS: Newly diagnosed breast cancer patients seen at an academic breast center between June 2019 and February 2021 were invited to participate in longitudinal PRO surveys at their initial clinic visit. If willing to participate, patients were emailed the validated BREAST-Q™ questionnaire at the initial clinic visit (baseline), 2 weeks after surgery, and then every 3 months for the first year. We used linear mixed models to estimate the differences in slopes over time between lumpectomy and mastectomy for each PRO measure. Pearson's Chi-square tests with Yates' continuity correction were used to compare proportions of patients who return to baseline PRO scores. P < 0.05 was considered significant. RESULTS: Of 164 patients invited to participate, 100 (61%) completed a baseline survey and were included in analyses. Mastectomy patients had significantly greater decreases in breast satisfaction (P = 0.002), psychosocial well-being (P < 0.0001), and sexual well-being (P < 0.0001) over time compared with lumpectomy patients. Both surgical groups reported a decrease in physical well-being, although the decline was more significant in lumpectomy patients (P = 0.005). At 3 months and 6 months after surgery, significantly larger proportions of lumpectomy patients returned to their baseline breast satisfaction, psychosocial well-being, and physical well-being compared with mastectomy patients. CONCLUSIONS: Understanding how outcomes important to patients change over the care continuum can provide opportunities for early intervention and may prevent debilitating long-term morbidities of treatment.

'You can't start a car when there's no petrol left': a qualitative study of patient, family and clinician perspectives on implantable cardioverter defibrillator deactivation.

OBJECTIVE: To explore the attitudes towards implantable cardioverter defibrillator (ICD) deactivation and initiation of deactivation discussions among patients, relatives and clinicians. DESIGN: A multiphase qualitative study consisting of in situ hospital ICD clinic observations, and semistructured interviews of clinicians, patients and relatives. Data were analysed using a constant comparative approach. SETTING: One tertiary and two district general hospitals in England. PARTICIPANTS: We completed 38 observations of hospital consultations prior to ICD implantation, and 80 interviews with patients, family members and clinicians between 2013 and 2015. Patients were recruited from preimplantation to postdeactivation. Clinicians included cardiologists, cardiac physiologists, heart failure nurses and palliative care professionals. RESULTS: Four key themes were identified from the data: the current status of deactivation discussions; patients' perceptions of deactivation; who should take responsibility for deactivation discussions and decisions; and timing of deactivation discussions. We found that although patients and doctors recognised the importance of advance care planning, including ICD deactivation at an early stage in the patient journey, this was often not reflected in practice. The most appropriate clinician to take the lead was thought to be dependent on the context, but could include any appropriately trained member of the healthcare team. It was suggested that deactivation should be raised preimplantation and regularly reviewed. Identification of trigger points postimplantation for deactivation discussions may help ensure that these are timely and inappropriate shocks are avoided. CONCLUSIONS: There is a need for early, ongoing and evolving discussion between ICD recipients and clinicians regarding the eventual need for ICD deactivation. The most appropriate clinician to instigate deactivation discussions is likely to vary between patients and models of care. Reminders at key trigger points, and routine discussion of deactivation at implantation and during advance care planning could prevent distressing experiences for both the patient and their family at the end of life.

Shared Decision-Making for Left Ventricular Assist Devices: Rationale and Design of a Nationwide Dissemination and Implementation Project.

Background The left ventricular assist device (LVAD) has become a common medical option for patients with end-stage heart failure. Although patients' chances of survival may increase with an LVAD compared with medical therapy, the LVAD poses many risks and requires major lifestyle changes, thus making it a complex medical decision. Our prior work found that a decision aid for LVADs significantly increased decision quality for both patients and caregivers and was successfully implemented at 6 LVAD programs. Methods In follow-up, we are conducting a nationwide dissemination and implementation project, with the goal of implementing the decision aid at as many of the 176 LVAD programs in the United States as possible. Guided by the Theory of Diffusion of Innovations, the project consists of 4 phases: (1) building a network; (2) promoting adoption; (3) supporting implementation; and (4) encouraging maintenance. Developing an LVAD network of contacts occurs by using a national baseline survey of LVAD clinicians, existing professional relationships, and an internet-based strategy. A suite of resources targeted to promote adoption and support implementation of the decision aid into standard LVAD education processes are provided to the network. Evaluation is guided by the Reach, Effectiveness, Adoption, Implementation, Maintenance framework, where clinician and patient surveys and qualitative interviews determine the reach, effectiveness, adoption, implementation, and maintenance achieved. Conclusions This project is a true dissemination study in that it targets the entire population of LVAD programs in the United States and is unique in its use of social marketing principles to promote adoption and implementation. The implementation plan is intended to serve as a test case and model for dissemination and implementation of other evidence-based decision support aids and strategies.

"I just need to know they are going to do what they say they're going to do with my mom." Understanding hospice expectations from the patient, caregiver and admission nurse perspective.

OBJECTIVE: The objective of this paper is to understand patient, caregiver and hospice admission nurses needs during the hospice admission conversation so patients and their caregivers can make informed decisions about hospice. METHODS: Resulting data set from this qualitative study included 60 h of observation and a total of 30 interviews with caregivers, patients and hospice admission nurses. Participants were from a large non-profit hospice; observation settings included: home, hospital and skilled nursing facility. RESULTS: Four themes were identified: (1) Wide variation in patient knowledge of hospice care prior to the admission conversation, (2) competing expectations and objectives for the admission conversation between patients, caregivers and hospice admission team members, (3) organizational influences around the goals of the admission conversation, (4) importance of integrating the patient and caregiver perspective to improve the quality of admission conversations. CONCLUSION: Hospice services provided may be inconsistently explained by hospice personnel and therefore, can be misunderstood by patients and families. With the ubiquitous challenges surrounding hospice admission consults, there is a critical need for complete and accurate information during the admission process. PRACTICE IMPLICATIONS: Providing accurate and pertinent information at the time of the admission consult can help mitigate misinformed expectations of services provided.

Hospice, She Yelped: Examining the Quantity and Quality of Decision Support Available to Patient and Families Considering Hospice.

CONTEXT: Whether to engage hospice is one of the most difficult medical decisions patients and families make. Meanwhile, misperceptions about hospice persist. Within this context, the breadth and depth of patient decision support materials for hospice are unknown. OBJECTIVES: The objective of this study was to identify available patient decision aids (PtDAs) relating information about hospice care and compare that information with the informational needs expressed by real-world health care consumers. METHODS: First, the research team conducted an environmental scan of available PtDAs that included hospice as a treatment option and met six basic criteria defined by the International Patient Decision Aid Standards. Second, laypersons conducted an organic Web search for information regarding hospice, followed by a semi-structured interview eliciting perceptions of the available information. The setting was the University of Colorado Health Care System. Participants included 20 laypersons aged 18 years or older. RESULTS: The environmental scan identified 7PtDAs that included hospice. No PtDAs were designed primarily around hospice; rather, hospice was referenced under the umbrella of another treatment option. The layperson search identified information distinct from the scan; no participant accessed any of the above 7PtDAs. Many participants found the available online material confusing and biased, while failing to provide clear information on cost and lacking desired patient and caregiver testimonials. CONCLUSION: We found no formal PtDA designed primarily to help patients/families contemplating hospice. Furthermore, accessible online information about hospice does not appear to meet patient and caregiver decisional needs. These findings support the development and dissemination of high-quality decision support materials for hospice.

Making decisions about implantable cardioverter-defibrillators from implantation to end of life: an integrative review of patients' perspectives.

Implantable cardioverter-defibrillators (ICDs) are used for patients at risk of sudden cardiac death. Patients considering ICD therapy are faced with several preference-sensitive decisions. Our aim was to explore patients' ICD decision-making experiences from the decision to implant to the consideration of deactivation at end of life. We conducted an integrative review using Whittemore and Knafl's five steps. MEDLINE, CINAHL, PubMed, PsycINFO, and the Cochrane library were searched from 2000 to 2013. Eligible studies focused on the patient response regarding ICD decision-making. Key themes were identified and used as a framework to discuss findings through the chronological course of decisions faced by these patients. Of 354 potential citations, 25 articles were included. The trajectory of key decision points was whether or not to initiate ICD therapy, replace the battery, and deactivate at end of life. Three common themes from patients' perspectives were the influence of the patient-practitioner consultation on knowledge uptake, patients' decision-making preference, and their desire to live. Patients faced with ICD-related decisions often misunderstood the functionality of their ICD, or overestimated its benefit. They also expressed mixed preferences for the desire to be involved in decisions. The decisions around ICDs are particularly difficult for patients given the life and death trade off. Clinicians involved in the care of these patients could better support them by verifying their understanding and eliciting their preferences. Using a shared decision-making approach has the potential to achieve improved patient outcomes.

Feasibility and acceptability of a decision aid designed for people facing advanced or terminal illness: a pilot randomized trial.

BACKGROUND: Patients nearing the end of their lives face an array of difficult decisions. OBJECTIVE: This study was designed to assess the feasibility and acceptability of a decision aid (DA) designed for patients facing advanced or terminal illness. DESIGN: We conducted a pilot randomized clinical trial of Health Dialog's Looking Ahead: choices for medical care when you're seriously ill DA (booklet and DVD) applied to patients on a hospital-based palliative care (PC) service. SETTING: University of Colorado Hospital - December 2009 and May 2010. PARTICIPANTS: All adult, English-speaking patients or their decision makers were potentially eligible. Patients were not approached if they were in isolation, did not speak English or if any provider felt that they were not appropriate because of issues such as family conflict or actively dying. INTERVENTION: All participants received a standard PC consultation. Participants in the intervention arm also received a copy of the DA. Measurements Primary outcomes included decision conflict and knowledge. Participants in the intervention arm also completed an acceptability questionnaire and qualitative exit interviews. RESULTS: Of the 239 patients or decision makers, 51(21%) enrolled in the trial. The DA had no significant effect on decision conflict or knowledge. Exit interviews indicated it was acceptable and empowering, although they wished they had access to the DA earlier. CONCLUSIONS: While the DA was acceptable, feasibility was limited by late-life illness challenges. Future trials of this DA should be performed on patients earlier in their illness trajectory and should include additional outcome measures such as self-efficacy and confidence.

Variation in use of dual-chamber implantable cardioverter-defibrillators: results from the national cardiovascular data registry.

BACKGROUND: Among patients without an indication for a pacemaker, current evidence is inconclusive whether a dual-chamber implantable cardioverter-defibrillator (ICD) is superior to a single-chamber ICD. The current use of dual-chamber ICDs is not well characterized. METHODS: We conducted a cross-sectional study exploring hospital-level variation in the use of dual-chamber ICDs across the United States. Patients receiving a primary prevention ICD from 2006 through 2009 without a documented indication for a pacemaker were included. Multivariate hierarchical logistic regression was used to explore patient, health care provider, and physician factors related to the use of a dual-chamber device. RESULTS: Dual-chamber devices were implanted in 58% of the 87,115 patients without a pacing indication among 1293 hospitals, with hospital rates ranging from 0% in 33 centers to 100% in 109 centers. In multivariate analysis, geographic region was a strong independent predictor of dual-chamber device use, ranging from 36.4% in New England (reference region) to 66.4% in the Pacific region (odds ratio [OR], 5.25; 95% CI, 3.35-8.21). Hospital clustering was assessed using a median OR which was 3.96, meaning that 2 identical patients at different hospitals would have nearly a 4-fold difference in their chance of receiving a dual-chamber ICD. CONCLUSIONS: Use of dual-chamber ICDs for the primary prevention of sudden cardiac death among patients without an indication for permanent pacing varies markedly at the hospital level in the United States. This is a clear example of how practice can vary independent of patient factors.

Patient and cardiologist perceptions on decision making for implantable cardioverter-defibrillators: a qualitative study.

BACKGROUND: Although implantable cardioverter-defibrillators (ICDs) reduce mortality in selected patients, they are also associated with potential risks. Periprocedural decision making requires understanding both benefits and risks. METHODS: This qualitative study aims to understand cardiologists' and patients' perspectives about decision making surrounding ICD implantation using semi-structured, in-depth interviews. We interviewed 11 cardiologists (including four electrophysiologists) and 20 patients (14 with ICDs; six who declined ICDs). The data were analyzed through the theoretical lens of patient-centered care using the constant comparative method. RESULTS: Cardiologists emphasized the benefits of ICD therapy but varied substantially in the extent to which they emphasized the various risks associated with ICD implantation with patients. Cardiologists indicated that they were influenced by the benefits of therapy as presented in published guidelines. Many patients who chose to receive an ICD indicated that they followed the advice of their physician without questioning the risks and benefits of the device. Some ICD recipients described not learning many of the risks until after device implantation or when they experienced these side effects. Patients who declined ICD implantation were concerned that the ICD was unnecessary or believed that the risks related to sudden death without an ICD did not apply to them. Only one patient considered the trade-off between dying quickly versus living longer with progressive heart failure. CONCLUSIONS: In our sample, cardiologists' desire to adhere to published guidelines appears to inhibit shared decision making. The marked variability in the discussions surrounding ICD decisions highlights a need for an improved process of ICD decision making.

Palliative medicine and decision science: the critical need for a shared agenda to foster informed patient choice in serious illness.

Assisting patients and their families in complex decision making is a foundational skill in palliative care; however, palliative care clinicians and scientists have just begun to establish an evidence base for best practice in assisting patients and families in complex decision making. Decision scientists aim to understand and clarify the concepts and techniques of shared decision making (SDM), decision support, and informed patient choice in order to ensure that patient and family perspectives shape their health care experience. Patients with serious illness and their families are faced with myriad complex decisions over the course of illness and as death approaches. If patients lose capacity, then surrogate decision makers are cast into the decision-making role. The fields of palliative care and decision science have grown in parallel. There is much to be gained in advancing the practices of complex decision making in serious illness through increased collaboration. The purpose of this article is to use a case study to highlight the broad range of difficult decisions, issues, and opportunities imposed by a life-limiting illness in order to illustrate how collaboration and a joint research agenda between palliative care and decision science researchers, theorists, and clinicians might guide best practices for patients and their families.