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OBJECTIVES: Current approaches to communicating the potential late effects of pediatric oncology treatments leave many patients and families feeling unaware of risks and unprepared for the future. We aimed to identify provider perspectives on early communication about late effects. METHODS: Semi-structured interviews were conducted with pediatric oncology providers at Dana-Farber/Boston Children's Cancer and Blood Disorders Center from December 2021 to March 2022. Purposeful sampling ensured a diversity of clinical roles. Thematic analysis was conducted using deductive and inductive codes. RESULTS: We interviewed nine pediatric oncology providers; all expressed discomfort discussing potential late effects in early treatment conversations. Barriers to late effects communication included (i) social-emotional factors, including lack of perceived importance to families, worry about emotional burden on families, and provider feelings of helplessness/wanting to provide hope; and (ii) suboptimal set-up/resources, including limitations of consent forms, time constraints, and lack of available data. All providers supported the creation of a communication tool to assist early discussions of late effects. CONCLUSIONS: Communicating about late effect risks poses unique challenges to providers because of the perceived impact on families and the limitations of current practices and available resources. These findings support the need for a late effects communication tool to assist in early communication about late effects risks.
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Comunicação , Neoplasias , Humanos , Neoplasias/psicologia , Neoplasias/terapia , Feminino , Masculino , Criança , Oncologia/métodos , Relações Médico-PacienteRESUMO
PURPOSE: Disparities in breast cancer treatment for low-income and minority women are well documented. We examined economic hardship, health literacy, and numeracy and whether these factors were associated with differences in receipt of recommended treatment among breast cancer survivors. METHODS: During 2018-2020, we surveyed adult women diagnosed with stage I-III breast cancer between 2013 and 2017 and received care at three centers in Boston and New York. We inquired about treatment receipt and treatment decision-making. We used Chi-squared and Fisher's exact tests to examine associations between financial strain, health literacy, numeracy (using validated measures), and treatment receipt by race and ethnicity. RESULTS: The 296 participants studied were 60.1% Non-Hispanic (NH) White, 25.0% NH Black, and 14.9% Hispanic; NH Black and Hispanic women had lower health literacy and numeracy and reported more financial concerns. Overall, 21 (7.1%) women declined at least one component of recommended therapy, without differences by race and ethnicity. Those not initiating recommended treatment(s) reported more worry about paying large medical bills (52.4% vs. 27.1%), worse household finances since diagnosis (42.9% vs. 22.2%), and more uninsurance before diagnosis (9.5% vs. 1.5%); all P < .05. No differences in treatment receipt by health literacy or numeracy were observed. CONCLUSION: In this diverse population of breast cancer survivors, rates of treatment initiation were high. Worry about paying medical bills and financial strain were frequent, especially among non-White participants. Although we observed associations of financial strain with treatment initiation, because few women declined treatments, understanding the scope of impact is limited. Our results highlight the importance of assessments of resource needs and allocation of support for breast cancer survivors. Novelty of this work includes the granular measures of financial strain and inclusion of health literacy and numeracy.
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Neoplasias da Mama , Sobreviventes de Câncer , Letramento em Saúde , Adulto , Humanos , Feminino , Masculino , Neoplasias da Mama/epidemiologia , Neoplasias da Mama/terapia , Estresse Financeiro , SobreviventesRESUMO
PURPOSE: Evidence-based health communication campaigns can support tobacco control and address tobacco-related inequities among lesbian, gay, bisexual, transgender, and queer (LGBTQ +) populations. Community organizations focused on LGBTQ + health (e.g., nonprofits, community centers, and community health centers) can be prime channels for delivering evidence-based health communication campaigns. However, it is unclear how to balance the goals of a) designing campaigns to support broad adoption/uptake and b) adaptation addressing the needs of diverse communities and contexts. As part of an effort to support "designing for dissemination," we explored the key challenges and opportunities staff and leaders of LGBTQ + -serving community organizations encounter when adopting or adapting evidence-based health communication campaigns. METHODS: A team of researchers and advisory committee members conducted this study, many of whom have lived, research, and/or practice experience with LGBTQ + health. We interviewed 22 staff members and leaders of community organizations serving LGBTQ + populations in the US in early 2021. We used a team-based, reflexive thematic analysis approach. RESULTS: The findings highlight the challenges of attempting to use health communication campaigns misaligned with the assets and needs of organizations and community members. The three major themes identified were as follows: (1) available evidence-based health communication campaigns typically do not sufficiently center LGBTQ + communities, (2) negotiation regarding campaign utilization places additional burden on practitioners who have to act as "gatekeepers," and (3) processes of using health communication campaigns often conflict with organizational efforts to engage community members in adoption and adaptation activities. CONCLUSIONS: We offer a set of considerations to support collaborative design and dissemination of health communication campaigns to organizations serving LGBTQ + communities: (1) develop campaigns with and for LGBTQ + populations, (2) attend to the broader structural forces impacting campaign recipients, (3) support in-house testing and adaptations, and (4) increase access to granular data for community organizations.
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Minorias Sexuais e de Gênero , Pessoas Transgênero , Feminino , Humanos , Controle do Tabagismo , Comportamento Sexual , BissexualidadeRESUMO
INTRODUCTION: Acute lymphoblastic leukemia (ALL), the most common childhood malignancy, has a relatively favorable long-term prognosis. Yet the complexity of treatment and the emotionality of the diagnosis leave families feeling unprepared for many aspects of therapy. This qualitative study aimed to identify desired elements and format of a communication resource to support patients and families facing a diagnosis of ALL. METHODS: Semi-structured interviews of 12 parents of children receiving ALL treatment, 10 parents of survivors of ALL, and eight adolescent and young adult (AYA) survivors of ALL were conducted between February and June 2021. The interviews focused on communication experiences throughout treatment and identified domains to be addressed in a resource in development. RESULTS: All participants supported the development of an interactive, electronic health (eHealth) resource to help navigate ALL treatment. They felt a website would be helpful in addressing information gaps and mitigating pervasive feelings of overwhelm. Participants specifically sought: (a) information resources to address feelings of cognitive overload; (b) practical tips to help navigate logistical challenges; (c) clear depictions of treatment choices and trajectories to facilitate decision-making; and (d) additional psychosocial resources and support. Two overarching themes that families felt should be interwoven throughout the eHealth resource were connections with other patients/families and extra support at transitions between phases of treatment. CONCLUSIONS: A new diagnosis of ALL and its treatment are extremely overwhelming. Patients and families unanimously supported an eHealth resource to provide additional information and connect them with emotional support, starting at diagnosis and extending throughout treatment.
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Neoplasias , Pais , Criança , Adolescente , Adulto Jovem , Humanos , Pais/psicologia , Comunicação , Pesquisa Qualitativa , Neoplasias/terapia , Neoplasias/psicologia , AconselhamentoRESUMO
The Day100 Talk (Day100) bridges communication gaps between parents and clinicians early in pediatric cancer care through an interprofessional family conference facilitated by structured tools. We aimed to understand communication challenges and facilitators and to adapt Day100 for Spanish-speaking parents. We interviewed Spanish-speaking parents with limited English proficiency, Spanish-English medical interpreters, and clinicians to gather communication experiences and adapt Day100. Results showed that communication difficulties were precipitated by linguistic and cultural differences, nonvisual technologies, and limited spontaneous communication. Interpreters enhanced communication as linguistic and cultural brokers. Nonverbal cues also facilitated communication. Participants offered recommendations to adapt Day100 for future study.
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Idioma , Neoplasias , Criança , Humanos , Comunicação , Barreiras de Comunicação , Neoplasias/terapia , PaisRESUMO
BACKGROUND: Of the nearly 50,000 women in the United States who undergo treatment for ductal carcinoma in situ (DCIS) annually, many may not benefit from treatment. To better understand the impact of a DCIS diagnosis, patients self-identified as having had DCIS were engaged regarding their experience. METHODS: In July 2014, a web-based survey was administered through the Susan Love Army of Women breast cancer listserv. The survey included open-ended questions designed to assess patients' perspectives about DCIS diagnosis and treatment. Deductive and inductive codes were applied to the responses; common themes were summarized. RESULTS: Among the 1832 women included in the analytic sample, the median age at diagnosis was 60 years. Four primary themes were identified: 1) uncertainty surrounding a DCIS diagnosis, 2) uncertainty about DCIS treatment, 3) concern about treatment side effects, and 4) concern about recurrence and/or developing invasive breast cancer. When diagnosed, participants were often uncertain about whether they had cancer or not and whether they should be considered a "survivor." Uncertainty about treatment manifested as questioning the appropriateness of the amount of treatment received. Participants expressed concern about the "cancer spreading" or becoming invasive and that they were not necessarily "doing enough" to prevent recurrence. CONCLUSIONS: In a large, national sample, participants with a history of DCIS reported confusion and concern about the diagnosis and treatment, which caused worry and significant uncertainty. Developing strategies to improve patient and provider communications regarding the nature of DCIS and acknowledging gaps in the current knowledge of management options should be a priority.
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Neoplasias da Mama , Carcinoma Ductal de Mama , Carcinoma Intraductal não Infiltrante , Neoplasias da Mama/diagnóstico , Neoplasias da Mama/patologia , Neoplasias da Mama/terapia , Carcinoma Intraductal não Infiltrante/diagnóstico , Carcinoma Intraductal não Infiltrante/patologia , Carcinoma Intraductal não Infiltrante/terapia , Comunicação , Feminino , Humanos , Sobreviventes , Incerteza , Estados UnidosRESUMO
PURPOSE: The degree to which breast cancer survivors know about their tumors and understand treatment rationales is not well understood. We sought to identify information gaps within a diverse sample and explore whether knowledge about breast cancer and treatment may impact care. METHODS: We conducted a one-time, interviewer-administered survey of women who were diagnosed with breast cancer during 2013-2017 and received care at one of three centers in Boston, MA, and New York, NY. We examined knowledge of breast cancer and treatment rationales, information preferences, and treatment receipt. RESULTS: During 2018-2020, we interviewed 313 women (American Association for Public Opinion Research Cooperation Rates 58.4-76.5% across centers) who were 56.9% White, 23.6% Black, 14.1% Hispanic, and 5.4% other. Among the 296 included in analyses, we observed high variability in knowledge of breast cancer and treatment rationales, with a substantial number demonstrating limited knowledge despite feeling highly informed; > 25% actively avoided information. Black and Hispanic (vs. White) women consistently knew less about their cancers. Lack of understanding of treatment rationales for chemotherapy, radiation, and hormonal therapy was common but not consistently different by race and ethnicity. Understanding treatment rationale (but not cancer knowledge) was associated with treatment initiation, but small sample sizes limited in-depth examination. CONCLUSIONS: Our study highlights the need for enhanced informational support for breast cancer survivors, who are challenged with complex information during the decision-making process and beyond. More research is needed to understand how to further educate and empower diverse populations of patients with breast cancer.
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Neoplasias da Mama , Sobreviventes de Câncer , Humanos , Feminino , Neoplasias da Mama/terapia , Neoplasias da Mama/tratamento farmacológico , Sobreviventes , Hispânico ou Latino , População NegraRESUMO
PURPOSE: To support shared decision-making, patient-facing resources are needed to complement recently published guidelines on approaches for surveillance mammography in breast cancer survivors aged ≥ 75 or with < 10-year life expectancy. We created a patient guide to facilitate discussions about surveillance mammography in older breast cancer survivors. METHODS: The "Are Mammograms Still Right for Me?" guide estimates future ipsilateral and contralateral breast (in-breast) cancer risks, general health, and the potential benefits/harms of mammography, with prompts for discussion. We conducted in-clinic acceptability testing of the guide by survivors and their clinicians at a National Cancer Institute-designated comprehensive cancer center, including two community practices. Patients and clinicians received the guide ahead of a clinic visit and surveyed patients (pre-/post-visit) and clinicians (post-visit). Acceptability was defined as ≥ 75% of patients and clinicians reporting that the guide (a) should be recommended to others, (b) is clear, (c) is helpful, and (d) contains a suitable amount of information. We also elicited feedback on usability and mammography intentions. RESULTS: We enrolled 45 patients and their 21 clinicians. Among those responding in post-visit surveys, 33/37 (89%) patients and 15/16 (94%) clinicians would recommend the guide to others; 33/37 (89%) patients and 15/16 (94%) clinicians felt everything/most things were clear. All other pre-specified acceptability criteria were met. Most patients reported strong intentions for mammography (100% pre-visit, 98% post-visit). CONCLUSION: Oncology clinicians and older breast cancer survivors found a guide to inform mammography decision-making acceptable and clear. A multisite clinical trial is needed to assess the guide's impact mammography utilization. TRIAL REGISTRATION: ClinicalTrials.gov-NCT03865654, posted March 7, 2019.
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Neoplasias da Mama , Sobreviventes de Câncer , Idoso , Neoplasias da Mama/diagnóstico por imagem , Neoplasias da Mama/epidemiologia , Feminino , Humanos , Expectativa de Vida , Mamografia , SobreviventesRESUMO
BACKGROUND: Communication gaps arise early in the childhood cancer trajectory and may persist. The authors conducted a pilot study of the feasibility and acceptability of a communication intervention, the Day 100 Talk (D100). D100 involves an interprofessional family conference during initial months of treatment between oncologists, psychosocial clinicians, and parents, facilitated by a 3-part conversation tool. METHODS: The authors enrolled English-speaking parents of children with nonrelapsed, nonprogressive cancer who were receiving continuity care from enrolled pediatric oncologists and psychosocial clinicians at a single site. The a priori feasibility threshold was 60% parent completion of the D100 intervention. Surveys from parents and professionals and debrief interviews with professionals assessed D100 acceptability. RESULTS: Thirty-seven parents (77%) and 38 oncology professionals (67%) enrolled. Twenty of 33 evaluable parents (61%) participated in a D100 family conference. Most commonly, parents did not complete the D100 intervention because of scheduling difficulties related to clinical team constraints. All 17 parents who completed a post-D100 survey agreed or strongly agreed that D100 participation was helpful. In debrief interviews, professionals identified D100 benefits, namely, stepping back to the big picture and getting on the same page, and barriers related to logistical challenges and professionals' anticipatory dread. CONCLUSIONS: The D100 intervention pilot demonstrates high acceptability among parents of children with cancer. Despite meeting the prespecified feasibility threshold, findings highlight important barriers to D100 dissemination, namely, perceived burdens on professionals. Potential strategies to reduce burden may include using virtual visit platforms, incorporating D100 elements across multiple visits, or prioritizing intervention delivery to parents with the greatest need for enhanced communication.
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Comunicação Interdisciplinar , Neoplasias/terapia , Oncologistas , Pais/psicologia , Relações Profissional-Família , Psico-Oncologia , Adolescente , Adulto , Idoso , Criança , Pré-Escolar , Família , Estudos de Viabilidade , Feminino , Humanos , Lactente , Entrevista Psicológica , Masculino , Pessoa de Meia-Idade , Oncologistas/estatística & dados numéricos , Projetos Piloto , Psico-Oncologia/estatística & dados numéricos , Angústia Psicológica , Fatores de Tempo , Adulto JovemRESUMO
Phenomenon: Learning to assume ownership of patient care is a critical objective of medical training. However, little is known about how ownership is best defined and measured or about its value to trainees. The authors aimed to define ownership and elucidate the significance of developing ownership skills over the course of pediatric residency training. Approach: Focus groups and phone interviews were held with pediatric residency program directors (N = 18) and pediatric residents (N = 14). Focus groups and interviews were audio-recorded, transcribed verbatim, and qualitatively analyzed using thematic analysis. Findings: Program directors and residents characterized ownership as essential to good patient care. Ownership was defined as including personal responsibility, a connection to patients/families, and follow-up and follow-through. For many, ownership was most conspicuous in its absence. Respondents found meaning in their work when exerting ownership and lack of ownership was linked to burnout and frustration. Ownership was recognized as a critical skill that requires development during training to form a professional identity, avoid burnout, become an independent practitioner and function as an integral member of medical teams. Insights: Pediatric residents and faculty considered ownership a cornerstone of patient care and critical to forming a professional identity. The defining characteristics of patient care ownership-personal responsibility, connections with patients and families, and continuity of care-can be used to develop an instrument to assess trainee development of ownership. These findings reinforce the value of ownership in graduate medical education and support creating curricular interventions to foster ownership.
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Educação de Pós-Graduação em Medicina , Assistência ao Paciente , Adulto , Esgotamento Profissional , Feminino , Grupos Focais , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Relações Profissional-Paciente , Profissionalismo , Pesquisa Qualitativa , Inquéritos e QuestionáriosRESUMO
BACKGROUND: During acute health deterioration, emergency medicine and palliative care clinicians routinely discuss code status (e.g., shared decision making about mechanical ventilation) with seriously ill patients. Little is known about their approaches. We sought to elucidate how code status conversations are conducted by emergency medicine and palliative care clinicians and why their approaches are different. METHODS: We conducted a sequential-explanatory, mixed-method study in three large academic medical centers in the Northeastern United States. Attending physicians and advanced practice providers working in emergency medicine and palliative care were eligible. Among the survey respondents, we purposefully sampled the participants for follow-up interviews. We collected clinicians' self-reported approaches in code status conversations and their rationales. A survey with a 5-point Likert scale ("very unlikely" to "very likely") was used to assess the likelihood of asking about medical procedures (procedure based) and patients' values (value based) during code status conversations, followed by semistructured interviews. RESULTS: Among 272 clinicians approached, 206 completed the survey (a 76% response rate). The reported approaches differed greatly (e.g., 91% of palliative care clinicians reported asking about a patient's acceptable quality of life compared to 59% of emergency medicine clinicians). Of the 206 respondents, 118 (57%) agreed to subsequent interviews; our final number of semistructured interviews included seven emergency medicine clinicians and nine palliative care clinicians. The palliative care clinicians stated that the value-based questions offer insight into patients' goals, which is necessary for formulating a recommendation. In contrast, emergency medicine clinicians stated that while value-based questions are useful, they are vague and necessitate extended discussions, which are inappropriate during emergencies. CONCLUSIONS: Emergency medicine and palliative care clinicians reported conducting code status conversations differently. The rationales may be shaped by their clinical practices and experiences.
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Medicina de Emergência , Cuidados Paliativos , Humanos , Qualidade de Vida , Comunicação , Inquéritos e QuestionáriosRESUMO
Background: As the field of palliative care continues to grow, many clinicians will care for patients with whom they have personal connections. Breaching the boundary between a clinician's personal and professional life is potentially an unrecognized risk for burnout. Objective: We explored the challenges of caring for patients personally known to clinicians and the types of support needed, with a view to developing preliminary practice guidelines. Design: Focus groups. Setting/Subjects: Thirteen psychosocial oncology and palliative care clinicians who care for adult patients participated in one of two focus groups. Six participants were physicians, four were nurse practitioner/registered nurse/physician assistant (NP/RN/PAs), and three were psychosocial clinicians. Measurement: Using NVivo 12, we analyzed focus group transcripts from clinicians about their experiences caring for patients they know personally, the impact of such experiences, and the type of support and guidelines that could benefit clinicians in these unique situations. Results: Navigating boundaries and managing the psychological impact on the clinician, including fear of negative evaluation, increased anxiety and emotional exhaustion were the most challenging aspects of providing such care. Suggested guidelines include an early team meeting, a buddy system, a conversation guide to address the dual relationship, and embedded psychological support and mentorship. Conclusions: Feedback from clinicians identified preliminary guidelines that incorporate tools palliative care teams can use to improve support for clinicians caring for patients with whom they have a personal connection. These tools address the psychosocial aspects of care and have the potential to help clinicians feel a greater sense of control in these often, challenging and emotionally taxing situations.
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Esgotamento Profissional , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Médicos , Adulto , Humanos , Cuidados Paliativos/psicologia , Esgotamento Profissional/psicologia , Médicos/psicologia , Grupos FocaisRESUMO
CONTEXT: Family caregivers of patients with advanced cancer are integrally involved in communications regarding prognosis and end-of-life (EOL) planning and care. Yet little research has examined caregivers' communication experiences or the impact of these experiences on patients and caregivers at EOL. OBJECTIVES: Investigate cancer caregivers' communication experiences and potential impact on patient and caregiver outcomes. METHODS: Semistructured interviews with bereaved family cancer caregivers (N=19) about their communication needs and experiences as their loved one approached EOL and died. Audiotaped interviews were transcribed and thematically analyzed for communication-related themes. RESULTS: Caregivers described fulfilling many important communication roles including information gathering and sharing, advocating, and facilitating-often coordinating communication with multiple partners (e.g., patient, family, oncology team, hospital team). Caregivers reported that, among the many topics they communicated about, prognosis and EOL were the most consequential and challenging. These challenges arose for several reasons including caregivers' and patients' discordant communication needs, limited opportunity for caregivers to satisfy their personal communication needs, uncertainty regarding their communication needs and responsibilities, and feeling unacknowledged by the care team. These challenges negatively impacted caregivers' abilities to satisfy their patient-related communication responsibilities, which shaped many outcomes including end-of-life decisions, care satisfaction, and bereavement. CONCLUSION: Caregivers often facilitate essential communication for patients with advanced cancers yet face challenges successfully fulfilling their own and patients' communication needs, particularly surrounding prognostic and end-of-life conversations. Future research and interventions should explore strategies to help caregivers navigate uncertainty, create space to ask sensitive questions, and facilitate patient-caregiver discussions about differing informational needs.
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Luto , Neoplasias , Assistência Terminal , Humanos , Cuidadores , Prognóstico , Pesquisa Qualitativa , Neoplasias/terapia , Morte , ComunicaçãoRESUMO
PURPOSE: Advances in digital health technology can overcome barriers to measurement of function and mobility for older adults with blood cancers, but little is known about how older adults perceive such technology for use in their homes. METHODS: To characterize potential benefits and barriers associated with using technology for home functional assessment, we conducted three semistructured focus groups (FGs) in January 2022. Eligible patients came from the Older Adult Hematologic Malignancies Program at Dana-Farber Cancer Institute (DFCI), which includes adults 73 years and older enrolled during their initial consult with their oncologist. Eligible caregivers were 18 years and older and identified by enrolled patients as their primary caregiver. Eligible clinicians were practicing DFCI hematologic oncologists, nurse practitioners, or physician assistants with ≥2 years of clinical experience. A qualitative researcher led thematic analysis of FG transcripts to identify key themes. RESULTS: Twenty-three participants attended the three FGs: eight patients, seven caregivers, and eight oncology clinicians. All participants valued function and mobility assessments and felt that technology could overcome barriers to their measurement. We identified three themes related to potential benefits: making it easier for oncology teams to consider function and mobility; providing standardized, objective data; and facilitating longitudinal data. We also identified four themes related to barriers to home functional assessment: concerns related to privacy and confidentiality, burden of measuring additional patient data, challenges in operating new technology, and concerns related to data improving care. CONCLUSION: These data suggest that specific concerns raised by older patients, caregivers, and oncology clinicians must be addressed to improve acceptability and uptake of technology used to measure function and mobility in the home.
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Neoplasias Hematológicas , Neoplasias , Humanos , Idoso , Cuidadores , Neoplasias/diagnóstico , Neoplasias/terapia , Neoplasias Hematológicas/diagnóstico , Neoplasias Hematológicas/terapia , Oncologia , TecnologiaRESUMO
Importance: Randomized clinical trial data have demonstrated that omission of surgical axillary evaluation does not affect overall survival in women 70 years and older with early-stage (clinical tumor category 1 [cT1] with node-negative [N0] disease) hormone receptor (HR)-positive and erb-B2 receptor tyrosine kinase 2 (ERBB2; formerly HER2)-negative breast cancer. Therefore, the Choosing Wisely initiative has recommended against routine use of sentinel lymph node biopsy (SLNB) in this population; however, retrospective data have revealed that more than 80% of patients eligible for SLNB omission still undergo the procedure. Multidisciplinary factors involved in these patterns remain unclear. Objective: To describe surgical, medical, and radiation oncologists' perspectives on omission of SLNB in women 70 years and older with cT1N0 HR-positive, ERBB2-negative breast cancer. Design, Setting, and Participants: This qualitative study used in-depth semi-structured interviews to explore the factors involved in oncologists' perspectives on providing care to older women who were eligible for SLNB omission. Purposive snowball sampling was used to recruit a sample of surgical, medical, and radiation oncologists representing a wide range of practice types and number of years in practice in the US and Canada. A total of 29 oncologists who finished training and were actively treating patients with breast cancer were interviewed. Interviews were conducted between March 1, 2020, and January 17, 2021. Main Outcomes and Measures: Recordings from semi-structured interviews were transcribed and deidentified. Thematic analysis was used to identify emergent themes. Results: Among 29 physicians (16 women [55.2%] and 13 men [44.8%]) who participated in interviews, 16 were surgical oncologists, 6 were medical oncologists, and 7 were radiation oncologists. Data on race and ethnicity were not collected. Participants had a range of experience (median [range] years in practice, 12.0 [0.5-30.0]) and practice types (14 academic [48.3%], 7 community [24.1%], and 8 hybrid [27.6%]). Interviews revealed that the decision to omit SLNB was based on nuanced patient- and disease-level factors. Wide variation was observed in oncologists' perspectives on SLNB omission recommendations and supporting data. In addition, participants' statements suggested that the multidisciplinary nature of cancer care may increase oncologists' anxiety regarding SLNB omission. Conclusions and Relevance: In this study, findings from interviews revealed that oncologists' perspectives may have implications for the largely unsuccessful deimplementation of SLNB in women 70 years and older with cT1N0 HR-positive, ERBB2-negative breast cancer. Interventions aimed at educating physicians, improving patient-physician communication, and facilitating preoperative multidisciplinary conversations may help to successfully decrease SLNB rates in this patient population.
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Oncologistas , Neoplasias de Mama Triplo Negativas , Idoso , Axila , Feminino , Humanos , Masculino , Estudos Retrospectivos , Biópsia de Linfonodo SentinelaRESUMO
CONTEXT: There is a paucity of data describing patients' expectations of goals of palliative radiotherapy (RT) and overall prognosis. OBJECTIVES: To explore patients' perceptions of and preferences for communication surrounding goals of palliative RT and cancer prognosis. METHODS: We conducted a qualitative study utilizing semi-structured interviews with seventeen patients with either bone or lung metastases receiving their first course of palliative RT at a comprehensive cancer center. All patient interviews were recorded, transcribed verbatim, and thematically analyzed. RESULTS: Themes of goals of palliative RT centered on either restoration, such as through improving quality of life or minimizing pain, or on a desire to combat cancer by eliminating tumor. While most patients perceived that palliative RT would palliate symptoms but not cure their cancer, some patients believed that the goal of palliative RT was to cure. Themes that emerged surrounding patients' understanding of prognosis and what lies ahead included uncertainty and apprehension about the future, a focus on additional treatment, and confronting mortality. Most patients preferred to receive information about goals of treatment and prognosis from their doctors, including radiation oncologists, rather than other members of the medical team. Patients also expressed a desire for written patient education materials on palliative RT. CONCLUSION: Unclear perceptions of goals of treatment and prognosis may motivate some patients to pursue unnecessarily aggressive cancer treatments. Patients desire prognostic information from their doctors, including radiation oncologists, who are important contributors to goals of care discussions and may improve patient understanding and well-being by using restorative rather than combat-oriented language.
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Objetivos , Neoplasias Pulmonares , Humanos , Prognóstico , Qualidade de Vida , Cuidados Paliativos , Pesquisa Qualitativa , Neoplasias Pulmonares/terapiaRESUMO
Background: Most older adults visit the emergency department (ED) near the end of life without advance care planning (ACP) and thus are at risk of receiving care that does not align with their wishes and values. ED GOAL is a behavioral intervention administered by ED clinicians, which is designed to engage seriously ill older adults in serious illness conversations in the ED. Seriously ill older adults found it acceptable in the ED. However, its potential to be used by nurses remains unclear. Objective: The aim of this study is to identify refinements to adapt an ED-based ACP intervention by eliciting the perspectives of nurses. Design: This is a qualitative study using semistructured interviews. Data were analyzed using axial coding methods. Setting/Subjects: We recruited a purposeful sample of ED nurses in one urban academic ED and one urban community ED in the northeastern region of the United States. Results: Twenty-five nurses were interviewed (mean age 46 years, 84% female, and mean clinical experience of 16 years). Emerging themes were identified within six domains: (1) nurses' prior experience with serious illness conversations, (2) overall impression of ED GOAL, (3) refinements to ED GOAL, (4) implementation of ED GOAL by ED nurses, (5) specially trained nursing model, and (6) use of telehealth with ED GOAL. Conclusions: ED nurses were generally supportive of using ED GOAL and provided insight into how to best adapt and implement it in their clinical practice. Empirical evidence for adapting ED GOAL to the nursing practice remains to be seen.
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Planejamento Antecipado de Cuidados , Serviços Médicos de Emergência , Idoso , Comunicação , Serviço Hospitalar de Emergência , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa QualitativaRESUMO
Qualitative methods are critical for implementation science as they generate opportunities to examine complexity and include a diversity of perspectives. However, it can be a challenge to identify the approach that will provide the best fit for achieving a given set of practice-driven research needs. After all, implementation scientists must find a balance between speed and rigor, reliance on existing frameworks and new discoveries, and inclusion of insider and outsider perspectives. This paper offers guidance on taking a pragmatic approach to analysis, which entails strategically combining and borrowing from established qualitative approaches to meet a study's needs, typically with guidance from an existing framework and with explicit research and practice change goals.Section 1 offers a series of practical questions to guide the development of a pragmatic analytic approach. These include examining the balance of inductive and deductive procedures, the extent to which insider or outsider perspectives are privileged, study requirements related to data and products that support scientific advancement and practice change, and strategic resource allocation. This is followed by an introduction to three approaches commonly considered for implementation science projects: grounded theory, framework analysis, and interpretive phenomenological analysis, highlighting core analytic procedures that may be borrowed for a pragmatic approach. Section 2 addresses opportunities to ensure and communicate rigor of pragmatic analytic approaches. Section 3 provides an illustrative example from the team's work, highlighting how a pragmatic analytic approach was designed and executed and the diversity of research and practice products generated.As qualitative inquiry gains prominence in implementation science, it is critical to take advantage of qualitative methods' diversity and flexibility. This paper furthers the conversation regarding how to strategically mix and match components of established qualitative approaches to meet the analytic needs of implementation science projects, thereby supporting high-impact research and improved opportunities to create practice change.
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CONTEXT: Patient-provider communication impacts how patients with cancer make decisions about treatment. OBJECTIVES: To examine patient perceptions of discussions, decision-making, and psychosocial burdens related to receiving palliative radiotherapy (RT), in order to inform best practices for communication about palliative RT. METHODS: We conducted an exploratory qualitative study using oral questionnaires and semi-structured interviews. Seventeen patients receiving their first course of palliative RT for lung or bone metastases at a comprehensive cancer center were interviewed. Patient interviews were transcribed verbatim and thematically analyzed using NVivo software. RESULTS: Themes that impacted patients' decisions to initiate RT included a desire to minimize pain, optimism about what RT could provide for the future, perception of having "no other choice," disappointment about cancer progression, and unfamiliarity with RT. Most patients preferred shared decision-making regarding RT initiation and reported patient empowerment, effective communication, and team collaboration as contributing to shared decision-making. Most patients preferred their physicians to make decisions about RT treatment intensity and described trust in their physicians, institutional reputation, and RT expertise as motivators for this preference. Patients who possessed a proactive decisional mindset about initiating RT as opposed to having "no other choice" were less likely to report experiencing psychosocial burdens. CONCLUSION: Most patients prefer shared decision-making regarding RT initiation but prefer their radiation oncologists to make decisions regarding treatment intensity. Communication that empowers patients in their desired level of engagement for RT decision-making may help patients make informed decisions, contribute toward a proactive decisional mindset, and reduce their perception of psychosocial burdens.
Assuntos
Tomada de Decisões , Cuidados Paliativos , Comunicação , Humanos , Participação do Paciente , Relações Médico-Paciente , Pesquisa QualitativaRESUMO
IMPORTANCE: There is currently no guidance on how to approach surveillance mammography for older breast cancer survivors, particularly when life expectancy is limited. OBJECTIVE: To develop expert consensus guidelines that facilitate tailored decision-making for routine surveillance mammography for breast cancer survivors 75 years or older. EVIDENCE: After a literature review of the risk of ipsilateral and contralateral breast cancer events among breast cancer survivors and the harms and benefits associated with mammography, a multidisciplinary expert panel was convened to develop consensus guidelines on surveillance mammography for breast cancer survivors 75 years or older. Using an iterative consensus-based approach, input from clinician focus groups, and critical review by the International Society for Geriatric Oncology, the guidelines were refined and finalized. FINDINGS: The literature review established a low risk for ipsilateral and contralateral breast cancer events in most older breast cancer survivors and summarized the benefits and harms associated with mammography. Draft mammography guidelines were iteratively evaluated by the expert panel and clinician focus groups, emphasizing a patient's risk for in-breast cancer events, age, life expectancy, and personal preferences. The final consensus guidelines recommend discontinuation of routine mammography for all breast cancer survivors when life expectancy is less than 5 years, including those with a history of high-risk cancers; consideration to discontinue mammography when life expectancy is 5 to 10 years; and continuation of mammography when life expectancy is more than 10 years. Individualized, shared decision-making is encouraged to optimally tailor recommendations after weighing the benefits and harms associated with surveillance mammography and patient preferences. The panel also recommends ongoing clinical breast examinations and diagnostic mammography to evaluate clinical findings and symptoms, with reassurance for patients that these practices will continue. CONCLUSIONS AND RELEVANCE: It is anticipated that these expert guidelines will enhance clinical practice by providing a framework for individualized discussions, facilitating shared decision-making regarding surveillance mammography for breast cancer survivors 75 years or older.