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BACKGROUND: It is unclear how patient-reported outcomes (PROs) change longitudinally after breast cancer surgery. We sought to compare trends in PROs among patients who underwent lumpectomy versus mastectomy over the first year after surgery. PATIENTS AND METHODS: Newly diagnosed stage 0-III female patients with breast cancer who underwent lumpectomy or mastectomy at an academic breast center between June 2019 and March 2023 were invited to participate in a longitudinal PRO study. Enrolled patients received the BREAST-Q™ module, a validated tool measuring domains, such as satisfaction with breasts, psychosocial well-being, physical well-being, and sexual well-being. Scores for each domain were compared between the lumpectomy and mastectomy groups over the first year after surgery. Linear mixed models were used to estimate the change in PRO scores over time. RESULTS: The cohort included 203 who underwent lumpectomy and 144 who underwent mastectomy. Patients who underwent lumpectomy were older, more likely to receive adjuvant radiation and endocrine therapy, and less likely to receive adjuvant chemotherapy. Patients who underwent lumpectomy demonstrated greater increases in scores over time for satisfaction with breasts, psychosocial well-being, and sexual well-being compared with patients who underwent mastectomy, after adjusting for the abovementioned covariates and receipt of reconstruction. The lumpectomy group had a larger decline in physical well-being over time compared with the mastectomy group. CONCLUSIONS: Patients who underwent lumpectomy demonstrated greater satisfaction with their breasts, psychosocial well-being, and sexual well-being but worse physical well-being over the first year after surgery compared with patients who underwent mastectomy. These results may help inform early-stage breast cancer patients making decisions about their surgical care.
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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.
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Neoplasias da Mama , Mastectomia , Humanos , Feminino , Neoplasias da Mama/cirurgia , Neoplasias da Mama/psicologia , Pessoa de Meia-Idade , Idoso , Estudos Longitudinais , Adulto , Mastectomia/psicologia , Mastectomia/efeitos adversos , Ansiedade/etiologia , Ansiedade/psicologia , Ansiedade/epidemiologia , Pesquisa Qualitativa , Qualidade de Vida , Inquéritos e Questionários/estatística & dados numéricos , Recidiva Local de Neoplasia/psicologia , Recidiva Local de Neoplasia/epidemiologiaRESUMO
INTRODUCTION: In this embedded substudy of a longitudinal, randomized controlled trial, we sought to evaluate the effects of patient engagement and results feedback on longitudinal patient-reported outcome (PRO) survey completion rates. METHODS: Newly diagnosed stage 0-III breast cancer patients seen at an academic breast center between June 2019 and December 2021 were invited to participate in a longitudinal PRO study. Participants were emailed the BREAST-Q survey, a validated PRO scale, preoperatively and at regular intervals during their postoperative course. Patients were randomized into the intervention group, who received survey results upon completion, or the control group, who received no feedback. The primary endpoint was postoperative survey completion rate. An intention to treat analysis was performed and a quasi-Poisson regression was used to compare rates of longitudinal survey completion between the two groups. RESULTS: Of the 253 patients offered the preoperative survey, 115 were in the intervention group and 138 were in the control group. Postoperative survey completion rate was 54% for the intervention group and 47% for the control group. There was no significant difference in longitudinal postoperative survey completion rate between the two groups (rate ratio 1.10; 95% confidence interval [CI] 0.93-1.31). CONCLUSIONS: In this prospective randomized controlled study, patients did not complete surveys at a higher rate when their survey results were shared with them, suggesting that viewing these results without appropriate clinical context does not generate significant enhancement in patient engagement. Effective interventions to improve survey response rate must be identified to better evaluate PROs.
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Medidas de Resultados Relatados pelo Paciente , Projetos de Pesquisa , Humanos , Estudos ProspectivosRESUMO
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.
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Neoplasias da Mama , Adulto , Imagem Corporal , Neoplasias da Mama/terapia , Feminino , Educação em Saúde , Humanos , Qualidade de Vida , Comportamento Sexual , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Shared decision-making using a decision aid is required for patients undergoing implantation of primary prevention implantable cardioverter-defibrillators (ICD). It is unknown how much this process has impacted patients' experiences or choices. Effective shared decision-making requires an understanding of how patients make ICD decisions. A qualitative key informant study was chosen to capture the breadth of patients' experiences making ICD decisions in the context of required shared decision-making. METHODS AND RESULTS: We conducted in-depth interviews with 20 patients referred to electrophysiology clinics for the consideration of primary prevention ICD implantation. Purposeful sampling from a prior survey study evaluating mandated shared decision-making was based on patient characteristics and responses to the initial survey questions. Qualitative descriptive analysis of the interviews was performed using a multilevel coding strategy. Patients' paths to an ICD decision often involved multiple visits with multiple clinicians. However, the decision aid was almost exclusively provided to the patient during electrophysiology clinic visits. Some patients used the numeric data in the decision aid to make an ICD decision based on the risk-benefit profile; others made decisions based on other data or based on trust in clinicians' recommendations. Patients highlighted information related to living with the device as particularly important in helping them to make their ICD decisions. Some patients struggled with the emotional aspects of making an ICD decision. CONCLUSIONS: Patients' ICD decision-making paths poses a challenge to episodic shared decision-making and may make tools such as decision aids perfunctory if used solely during the electrophysiology visit. Understanding patients' ICD decision-making paths, especially in the context of encounters with primary cardiologists, can inform the implementation strategies of shared decision-making help to enhance its impact. Components of decision aids focusing on the experience of living with an ICD rather than probabilistic data may also be more impactful, although the nature of their impact will differ.
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Desfibriladores Implantáveis , Insuficiência Cardíaca , Tomada de Decisões , Tomada de Decisão Compartilhada , Humanos , Prevenção Primária , Medição de Risco , Inquéritos e QuestionáriosRESUMO
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.
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Neoplasias da Mama , Mastectomia Segmentar , Neoplasias da Mama/cirurgia , Feminino , Humanos , Mastectomia , Medidas de Resultados Relatados pelo Paciente , Satisfação do Paciente , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Basal cell carcinoma (BCC) is a slow-growing, rarely lethal skin cancer that affects people 65 years or older. A range of treatment options exist for BCC, but there is little evidence available to guide patients and providers in selecting the best treatment options. OBJECTIVES: This study outlines the development of a patient decision aid (PDA) for low-risk BCC that can be used by patients and providers to assist in shared decision-making. METHODS: In accordance with the International Patient Decision Aids Standards (IPDAS) Collaboration framework, feedback from focus groups and semi-structured interviews with patients and providers, an initial prototype of the PDA was developed. This was tested using cognitive interviews and iteratively updated. RESULTS: We created eighteen different iterations using feedback from 24 patients and 34 providers. The key issues identified included: 1) Addressing fear of cancer; 2) Communicating risk and uncertainty; 3) Values clarification; and 4) Time lag to benefit. LIMITATIONS: The PDA does not include all possible treatment options and is currently paper based. CONCLUSIONS: Our PDA has been specifically adapted and designed to support patients with a limited life expectancy in making decisions about their low risk BCC together with their doctors.
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Carcinoma Basocelular/terapia , Técnicas de Apoio para a Decisão , Neoplasias Cutâneas , Adulto , Idoso , Idoso de 80 Anos ou mais , Tomada de Decisão Clínica , Grupos Focais , Humanos , Entrevistas como Assunto , Expectativa de Vida , Pessoa de Meia-Idade , Pacientes , Neoplasias Cutâneas/terapiaRESUMO
BACKGROUND: Both oral immunotherapy (OIT) and epicutaneous immunotherapy (EPIT) are emerging potential treatments for peanut allergy. Caregiver goals and expectations of these therapies are poorly defined. OBJECTIVE: To determine caregiver goals and expectations of food allergy therapy. METHODS: Twenty-two detailed, semistructured interviews of OIT and EPIT caregivers were conducted, allowing caregivers to describe their motivations for and experiences with food allergy therapy and life with a peanut allergic child. RESULTS: In this sample, caregivers of peanut allergic children enrolled in OIT or EPIT phase 3 trials expressed a primary goal for their child to develop a buffer against an unintentional peanut exposure. The perception of the buffer varied, representing a decreased reaction severity on exposure, increased time to react to allow for assessment, or increased threshold of peanut exposure tolerated. Although caregivers expressed that a buffer may increase their confidence in travel and dining outside the home, they do not anticipate this buffer would lessen their overall level of pretherapy anxiety, allergen-associated vigilance, or avoidance practices. Most of the caregivers hope the buffer will increase their and their child's perceived sense of freedom for the child's actions and social interactions, translating to quality of life improvement, while still respecting the limitations of having a severe allergy that has been partially treated. No caregiver viewed these therapies as a cure, and most viewed treatment as a supplement to their current avoidance practices. CONCLUSION: Caregivers of peanut allergic children strongly desire that OIT and EPIT result in a buffer against an unintentional reaction, although most admitted that this would not significantly change their anxiety and family's current lifestyle.
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Cuidadores , Dessensibilização Imunológica/métodos , Hipersensibilidade a Amendoim/terapia , Qualidade de Vida , Administração Oral , Alérgenos/administração & dosagem , Alérgenos/imunologia , Feminino , Objetivos , Humanos , Lactente , MasculinoRESUMO
BACKGROUND: Conversations about goals of care and cardiopulmonary resuscitation (CPR)/intubation for patients with advanced heart failure can be difficult. This study examined the impact of a video decision support tool and patient checklist on advance care planning for patients with heart failure. METHODS: This was a multisite, randomized, controlled trial of a video-assisted intervention and advance care planning checklist versus a verbal description in 246 patients ≥64 years of age with heart failure and an estimated likelihood of death of >50% within 2 years. Intervention participants received a verbal description for goals of care (life-prolonging care, limited care, and comfort care) and CPR/intubation plus a 6-minute video depicting the 3 levels of care, CPR/intubation, and an advance care planning checklist. Control subjects received only the verbal description. The primary analysis compared the proportion of patients preferring comfort care between study arms immediately after the intervention. Secondary outcomes were CPR/intubation preferences and knowledge (6-item test; range, 0-6) after intervention. RESULTS: In the intervention group, 27 (22%) chose life-prolonging care, 31 (25%) chose limited care, 63 (51%) selected comfort care, and 2 (2%) were uncertain. In the control group, 50 (41%) chose life-prolonging care, 27 (22%) selected limited care, 37 (30%) chose comfort care, and 8 (7%) were uncertain (P<0.001). Intervention participants (compared with control subjects) were more likely to forgo CPR (68% versus 35%; P<0.001) and intubation (77% versus 48%; P<0.001) and had higher mean knowledge scores (4.1 versus 3.0; P<0.001). CONCLUSIONS: Patients with heart failure who viewed a video were more informed, more likely to select a focus on comfort, and less likely to desire CPR/intubation compared with patients receiving verbal information only. CLINICAL TRIAL REGISTRATION: URL: http://www.clinicaltrials.gov. Unique identifier: NCT01589120.
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Planejamento Antecipado de Cuidados , Técnicas de Apoio para a Decisão , Insuficiência Cardíaca/terapia , Educação de Pacientes como Assunto/métodos , Idoso , Idoso de 80 Anos ou mais , Reanimação Cardiopulmonar/psicologia , Lista de Checagem , Insuficiência Cardíaca/psicologia , Hospitais de Ensino , Humanos , Intubação Intratraqueal/psicologia , Pessoa de Meia-Idade , Aceitação pelo Paciente de Cuidados de Saúde , Preferência do Paciente , Respiração Artificial/psicologia , Assistência Terminal/métodos , Assistência Terminal/psicologia , Gravação de VideoteipeRESUMO
BACKGROUND: Cognitive biases are psychological influences, which cause humans to make decisions, which do not seemingly maximize utility. For people with heart failure, the left ventricular assist device (LVAD) is a surgically implantable device with complex tradeoffs. As such, it represents an excellent model within which to explore cognitive bias in a real-world decision. We conducted a framework analysis to examine for evidence of cognitive bias among people deciding whether or not to get an LVAD. OBJECTIVES: The aim of this study was to explore the influence of cognitive bias on the LVAD decision-making process. METHODS: We analyzed previously conducted interviews of patients who had either accepted or declined an LVAD using a deductive, predetermined framework of cognitive biases. We coded and analyzed the interviews using an inductive-deductive framework approach, which also allowed for other themes to emerge. RESULTS: We interviewed a total of 22 heart failure patients who had gone through destination therapy LVAD decision making (15 who had accepted the LVAD and 7 who had declined). All patients appeared influenced by state dependence, where both groups described high current state of suffering, but the groups differed in whether they believed LVAD would relieve suffering or not. We found evidence of cognitive bias that appeared to influence decision making in both patient groups, but groups differed in terms of which cognitive biases were present. Among accepters, we found evidence of anchoring bias, availability bias, optimism bias, and affective forecasting. Among decliners, we found evidence of errors in affective forecasting. CONCLUSIONS: Medical decision making is often a complicated and multifaceted process that includes cognitive bias as well as other influences. It is important for clinicians to recognize that patients can be affected by cognitive bias, so they can better understand and improve the decision-making process to ensure that patients are fully informed.
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Tomada de Decisões , Insuficiência Cardíaca/psicologia , Coração Auxiliar/psicologia , Preferência do Paciente , Idoso , Idoso de 80 Anos ou mais , Cognição , Feminino , Insuficiência Cardíaca/terapia , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Estudos RetrospectivosRESUMO
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.
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Comportamento de Escolha , Tomada de Decisões , Técnicas de Apoio para a Decisão , Cuidados Paliativos , Participação do Paciente/métodos , Adulto , Idoso , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Fatores SocioeconômicosRESUMO
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.
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Insuficiência Cardíaca , Humanos , Feminino , Gravidez , Recém-Nascido , Criança , Insuficiência Cardíaca/terapia , Estresse Financeiro , Volume Sistólico , Assistência PerinatalRESUMO
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.
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Atividades Cotidianas , Assistência de Longa Duração , Idoso , Humanos , Feminino , Estados Unidos/epidemiologia , Idoso de 80 Anos ou mais , Masculino , Estudos Longitudinais , Medicare , Cuidadores/estatística & dados numéricosRESUMO
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.
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OBJECTIVE: To explore the interdisciplinary team members' beliefs and attitudes about sedation when caring for mechanically ventilated patients in the ICU. DESIGN: Cross-sectional survey. SETTING: A 17-bed cardiothoracic ICU at a tertiary care academic hospital in Colorado. SUBJECTS: All nurses, physicians, advanced practice providers (APPs), respiratory therapists, physical therapists (PTs), and occupational therapists (OTs) who work in the cardiothoracic ICU. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: We modified a validated survey instrument to evaluate perspectives on sedation across members of the interdisciplinary ICU team. Survey responses were collected anonymously from 111 members (81% response rate). Respondents were predominantly female (70 [63%]). Most respondents across disciplines (94%) believed that their sedation practice made a difference in patients' outcomes. More nurses (48%), APPs (62%), and respiratory therapists (50%) believed that sedation could help alleviate the psychologic stress that patients experience on the ventilator than physicians (19%) and PTs/OTs (0%) (p = 0.008). The proportion of respondents who preferred to be sedated if they were mechanically ventilated themselves varied widely by discipline: respiratory therapists (88%), nurses (83%), APPs (54%), PTs/OTs (38%), and physicians (19%) (p < 0.001). In our exploratory analysis, listeners of an educational podcast had beliefs and attitudes more aligned with best evidence-based practices than nonlisteners. CONCLUSIONS: We discovered significant interdisciplinary differences in the beliefs and attitudes regarding sedation use in the ICU. Since all ICU team members are involved in managing mechanically ventilated patients in the ICU, aligning the mental models of sedation may be essential to enhance interprofessional collaboration and promote sedation best practices.
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INTRODUCTION: This study was designed to determine if physicians' attitudes and recommendations surrounding implantable cardioverter-defibrillators (ICDs) are regionally associated with ICD use. METHODS AND RESULTS: A national sample of 9969 members of the American College of Cardiology was surveyed electronically. Responses were merged with rates of ICD implantation from the National Cardiovascular Data Registry. Multivariable regression was used to assess trends between regional use and responses. We received 1210 responses (12%) and used 1124 after exclusions. Across regions, physicians were equally likely to recommend ICDs to males or females with ischemic (â¼99% for both; P = NS) or nonischemic cardiomyopathy (85 vs. 88% P = 0.85). Significant increasing trends in the probability recommending ICD therapy were found when the patient was "frail" (21% to 32%; P = .03) or had a life expectancy <1 year (5% to 10%; P = .05). These differences were not associated with attitudes toward ICDs. CONCLUSIONS: Independent of variations in physicians' attitudes towards ICDs, physicians in regions of low ICD use are not less likely to recommend ICDs in situations clearly supported by guidelines while those in regions of high ICD use are more likely to recommend ICDs to patients who might have limited benefit.
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Atitude do Pessoal de Saúde , Desfibriladores Implantáveis/estatística & dados numéricos , Padrões de Prática Médica/estatística & dados numéricos , Cardiologia , Feminino , Pesquisas sobre Atenção à Saúde , Humanos , Masculino , Análise Multivariada , Padrões de Prática Médica/tendênciasRESUMO
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.
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Tomada de Decisões/ética , Desfibriladores Implantáveis/psicologia , Adulto , Idoso , Cardiologia/ética , Morte Súbita Cardíaca/prevenção & controle , Desfibriladores Implantáveis/ética , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Assistência Centrada no Paciente/ética , Pacientes/psicologia , Relações Médico-Paciente/ética , Pesquisa QualitativaRESUMO
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.