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BACKGROUND: Advance care planning (ACP) improves patient-provider communication and aligns care to patient values, preferences, and goals. Within a multisite Meta-network Learning and Research Center ACP study, one health system deployed an electronic health record (EHR) notification and algorithm to alert providers about patients potentially appropriate for ACP and the clinical study. OBJECTIVE: The aim of the study is to describe the implementation and usage of an EHR notification for referring patients to an ACP study, evaluate the association of notifications with study referrals and engagement in ACP, and assess provider interactions with and perspectives on the notifications. METHODS: A secondary analysis assessed provider usage and their response to the notification (eg, acknowledge, dismiss, or engage patient in ACP conversation and refer patient to the clinical study). We evaluated all patients identified by the EHR algorithm during the Meta-network Learning and Research Center ACP study. Descriptive statistics compared patients referred to the study to those who were not referred to the study. Health care utilization, hospice referrals, and mortality as well as documentation and billing for ACP and related legal documents are reported. We evaluated associations between notifications with provider actions (ie, referral to study, ACP not documentation, and ACP billing). Provider free-text comments in the notifications were summarized qualitatively. Providers were surveyed on their satisfaction with the notification. RESULTS: Among the 2877 patients identified by the EHR algorithm over 20 months, 17,047 unique notifications were presented to 45 providers in 6 clinics, who then referred 290 (10%) patients. Providers had a median of 269 (IQR 65-552) total notifications, and patients had a median of 4 (IQR 2-8). Patients with more (over 5) notifications were less likely to be referred to the study than those with fewer notifications (57/1092, 5.2% vs 233/1785, 13.1%; P<.001). The most common free-text comment on the notification was lack of time. Providers who referred patients to the study were more likely to document ACP and submit ACP billing codes (P<.001). In the survey, 11 providers would recommend the notification (n=7, 64%); however, the notification impacted clinical workflow (n=9, 82%) and was difficult to navigate (n=6, 55%). CONCLUSIONS: An EHR notification can be implemented to remind providers to both perform ACP conversations and refer patients to a clinical study. There were diminishing returns after the fifth EHR notification where additional notifications did not lead to more trial referrals, ACP documentation, or ACP billing. Creation and optimization of EHR notifications for study referrals and ACP should consider the provider user, their workflow, and alert fatigue to improve implementation and adoption. TRIAL REGISTRATION: ClinicalTrials.gov NCT03577002; https://clinicaltrials.gov/ct2/show/NCT03577002.
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Planejamento Antecipado de Cuidados , Registros Eletrônicos de Saúde , Humanos , Documentação , Comunicação , Atenção Primária à SaúdeRESUMO
Cancer survivorship care plans (SCPs) are endorsed to support quality care for cancer survivors, but uptake is slow. We assessed knowledge, needs, and preferences for SCP content and delivery from a wide variety of stakeholders. We focused SCP content for head and neck cancer as it is a disease prone to long-term side effects requiring management from multiple providers. We conducted telephone-based, qualitative interviews. We purposively sampled head and neck cancer survivors (n = 4), primary care physicians in the community (n = 5), and providers affiliated with a large academic medical center (n = 5) who treat head and neck cancer, cancer specialists (n = 6), and nurse practitioners/supportive care staff (n = 5). Interviews were recorded, transcribed, and analyzed using direct content analysis. Few participants reported personal experience with SCPs, but most supported the concept. Several key themes emerged: (1) perceived ambiguity regarding roles and responsibilities for SCPs, (2) a need to tailor the content and language based on the intended recipient, (3) documentation process should be as automated and streamlined as possible, (4) concerns about using the SCP to coordinate with outside providers, and (5) that SCPs would have added value as a "living document." We also report SCP-related issues that are unique to serving patients diagnosed with head and neck cancer. Effort is needed to tailor SCPs for different recipients and optimize their potential for successful implementation, impact on care outcomes, and sustainability. Many cancer survivors may not receive a SCP as part of routine care. Survivors could engage their health care team by requesting a SCP.
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Sobreviventes de Câncer , Planejamento de Assistência ao Paciente , Atitude do Pessoal de Saúde , Comunicação , Documentação , Feminino , Neoplasias de Cabeça e Pescoço , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Profissionais de Enfermagem , Médicos de Atenção Primária , Papel ProfissionalRESUMO
Long-term care for head and neck cancer (HNC) survivors is complex and requires coordination among multiple providers. Clinical practice guidelines highlight the role of primary care providers (PCPs) in screening for secondary cancer/recurrence, assessment of late/long-term side effects, and referrals for appropriate specialty management of toxicity. However, these responsibilities may be difficult to meet within the scope of primary care practice. We conducted this study to explore preferences, comfort, and knowledge of PCPs in the care of HNC survivors. We piloted a 40-item web-based survey developed with oncologist and PCP input targeted for family medicine and internal medicine providers. Responses were collected within a single university health system over 2 months. PCPs (n = 28; RR = 11.3%) were interested in learning about health promotion after cancer treatment (89%) and generally agree that their current practice patterns address healthy lifestyle behaviors (82%). However, only 32% of PCPs felt confident they could manage late/long-term side effects of chemotherapy, radiation, or surgery. Only 29% felt confident they could provide appropriate cancer screening. Looking at shared care responsibilities with oncology providers, PCPs perceived being responsible for 30% of care in the first year after treatment and 81% of care after 5 years. Seventy-one percent of PCPs agreed that oncologists provided them necessary information, yet 32% of PCPs found it difficult to coordinate with cancer providers. While these PCPs perceive increased care responsibility for long-term survivors, most are uncomfortable screening for recurrence and managing late/long-term side effects. Education and mutual coordination between PCPs and oncology providers may improve survivor care.
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Sobreviventes de Câncer/estatística & dados numéricos , Continuidade da Assistência ao Paciente/normas , Neoplasias de Cabeça e Pescoço/reabilitação , Conhecimentos, Atitudes e Prática em Saúde , Oncologistas/psicologia , Atenção Primária à Saúde/organização & administração , Sobrevivência , Sobreviventes de Câncer/psicologia , Continuidade da Assistência ao Paciente/estatística & dados numéricos , Atenção à Saúde , Humanos , Oncologistas/estatística & dados numéricos , Projetos Piloto , Padrões de Prática Médica/normas , Atenção Primária à Saúde/estatística & dados numéricos , Inquéritos e QuestionáriosRESUMO
Background: Bleeding disorder of unknown cause (BDUC) is a diagnostic category encompassing patients with a clear bleeding phenotype but without identifiable abnormality on hemostatic testing. The optimal management of hemostasis in BDUC patients prior to invasive procedures and childbirth is uncertain. Objectives: Our objective was to characterize periprocedural hemostatic prophylaxis and bleeding outcomes in patients with BDUC. Methods: We conducted a retrospective cohort study of adult patients with BDUC at 2 academic medical centers. Following diagnosis of BDUC, subsequent surgical procedures and childbirths were analyzed using a combination of registry data and manual chart review. Results: We identified 127 patients with mean age of 39.9 years (SD = 16.6); the majority of patients were female (91.3%). Forty-eight major procedures, 70 minor procedures, and 19 childbirths were analyzed. Antifibrinolytic monotherapy was advised for 57% of major procedures, 59% of minor procedures, and 67% of childbirths. Perioperative platelet transfusion was recommended in 26% of major procedures and 9% of minor procedures in combination with other hemostatic agents. Major or clinically relevant nonmajor bleeding occurred in 4.1% (4/98) of procedures with prophylaxis and 10% (2/20) of procedures without prophylaxis. Postpartum hemorrhage occurred in 26% (5/19) of deliveries. Conclusion: In this multiinstitution experience, we found overall low rates of hemostatic complications in procedures completed with hemostatic prophylaxis, although preventing hemorrhage in childbirth and gynecologic procedures remain unmet needs.
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Immunoglobulin light chain (AL) amyloidosis may be caused by a B-cell non-Hodgkin lymphoma (NHL) rather than a plasma cell neoplasm in rare cases, which presents unique diagnostic and management considerations. NHL associated with AL will often have an IgM paraprotein; thus, this disease is termed IgM-related AL amyloidosis (IgM AL). The clinical presentation of IgM AL is more likely to involve the lungs, peripheral nerves, and soft tissue; cardiac involvement is less common. Patients with IgM AL amyloidosis should undergo a lymphoma-directed work-up including evaluation for nodal and extranodal disease. Additionally, patients with an IgM paraproteinemia should be screened for AL amyloidosis through history and physical examination. Treatment regimens active against underlying lymphoma, rather than plasma cell-directed regimens, are recommended. Historical response rates in IgM AL have been poor; prospective studies of novel antineoplastic regimens may improve treatment outcomes.
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BACKGROUND: High-quality advance care planning (ACP) documentation facilitates the communication of patients' wishes as they progress in their disease course and travel between health care settings. No consensus exists regarding evaluation of documentation quality, and diverse strategies for assessing quality have been adopted in clinical ACP studies. METHODOLOGY: We conducted a literature review in PubMed and via manual search to identify clinical studies that assessed ACP quality or completeness as an outcome measure over a 5-year period. Studies that treated ACP as a binary outcome variable (present or absent), studies that took place outside of the US, and studies in pediatric populations were excluded from review. RESULTS: We identified 11 studies for inclusion in our review. Across study methodologies, the following 8 quality domains were identified: discussion frequency, documentation accessibility, discussion timing, health care proxy, health goals or values, scope of treatment/code status, prognosis/illness understanding, and end of life (EOL) care planning. Each study assessed between 2 and 6 domains. Divergent methods for assessing quality domains were utilized, including manual qualitative analysis and natural language processing techniques. CONCLUSION: Defining and measuring the quality of documentation is critical to developing ACP programs that improve patient care. Our review provides an adaptable framework centered around quality domains.
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Planejamento Antecipado de Cuidados , Diretivas Antecipadas , Criança , Comunicação , Documentação , Humanos , Inquéritos e QuestionáriosRESUMO
PURPOSE: Advance care planning (ACP) is a process in which patients share their values, goals, and preferences regarding future medical care. ACP can improve care quality, yet may be challenging to address for patients with cancer. We sought to characterize key components of ACP in patients with cancer as compared with patients with noncancer serious illness referred to palliative care (PC). METHODS: We performed a retrospective cross-sectional analysis of initial outpatient PC visits from the Quality Data Collection Tool for PC database from 2015 to 2019. Quality Data Collection Tool is a web-based point-of-care specialty PC registry to track quality metrics. RESULTS: We analyzed 1,604 patients with cancer and 1,094 patients without cancer: 44% of patients were female, 87% were White, and 98% were non-Hispanic. The average age was 72.2 years (standard deviation [SD] 15.4). Patients with cancer were on average younger than patients without cancer (66.5 [SD: 13.9] v 80.5 [SD: 13.8]) and had a higher Palliative Performance Scale (PPS) (59.5 [SD: 22.4] v 33.4 [SD: 25.1]). In our unadjusted comparison, patients with cancer were less likely to be DNR/DNI (37% v 53%; P < .0001) and less likely to have an advance directive (53% v 73%; < .0001); rates of healthcare proxy identification were similar (92.8% v 94.5%; P = .10). These differences did not persist when we accounted for age, race, sex, and PPS, with age being the primary explanatory factor. CONCLUSION: Despite having serious illness meriting PC referral, many patients with cancer in our study lacked advance directives. This highlights both the important role of oncologists in facilitating ACP and the utility of PC playing a complementary role.
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Planejamento Antecipado de Cuidados , Neoplasias , Idoso , Estudos Transversais , Feminino , Humanos , Neoplasias/terapia , Cuidados Paliativos , Encaminhamento e Consulta , Estudos RetrospectivosAssuntos
Sistemas de Notificação de Reações Adversas a Medicamentos , Anticorpos Biespecíficos , Anticorpos Monoclonais Humanizados , Fator VIII , Trombose , Humanos , Anticorpos Biespecíficos/efeitos adversos , Anticorpos Biespecíficos/uso terapêutico , Anticorpos Monoclonais Humanizados/efeitos adversos , Anticorpos Monoclonais Humanizados/uso terapêutico , Fator VIII/efeitos adversos , Hemofilia A/tratamento farmacológico , Hemofilia A/sangue , Hemofilia A/diagnóstico , Fatores de Risco , Trombose/prevenção & controle , Trombose/induzido quimicamente , Trombose/epidemiologia , Estados Unidos/epidemiologia , United States Food and Drug AdministrationRESUMO
BACKGROUND: Head and neck cancer (HNC) survivors experience significant sequelae of treatment, including long-term physical side effects and ongoing cancer surveillance. OBJECTIVES: The aim of this study is to understand patients' survivorship knowledge gaps and supportive care needs. METHODS: Through an anonymous cross-sectional survey, the authors evaluated 41 HNC survivors' knowledge regarding post-treatment issues. FINDINGS: Patients had undergone a variety of treatment modalities.
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Sobreviventes de Câncer/psicologia , Cuidadores/psicologia , Neoplasias de Cabeça e Pescoço/enfermagem , Neoplasias de Cabeça e Pescoço/psicologia , Enfermagem Oncológica/normas , Qualidade de Vida/psicologia , Sobrevivência , Adaptação Psicológica , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Planejamento de Assistência ao Paciente , Guias de Prática Clínica como Assunto , Estresse Psicológico/enfermagem , Adulto JovemRESUMO
INTRODUCTION: Although there are over 500 mobile health (mHealth) applications (apps) available for download in the field of oncology, little research has addressed their acceptability among health care providers. In addition, the providers' perspectives regarding patient app use has been largely unexamined. We conducted a qualitative study to explore opportunities and barriers for mHealth app use for oncology care. METHODS: We developed a structured interview guide focusing on acceptability, appropriateness, feasibility, and sustainability of the use of apps in cancer care. We interviewed 15 oncology providers about their attitudes and preferences. De-identified audio recordings were transcribed and coded for emerging themes. RESULTS: Providers interviewed included physicians (n = 8) and advanced practice (n = 3) and supportive services (n = 4) providers who care for a wide range of cancer types; ages ranged from 32 to 68 years. Interviews lasted approximately 30 minutes. Oncology providers reported limited exposure to mHealth apps in patient care, but were generally open to recommending or prescribing apps in the future. Key themes included opportunities for mobile app use (including general health promotion, tracking symptoms, and engaging patients) and barriers to implementation (including access to technology, responsibility, workflow, and the source of the app itself). CONCLUSION: Our results show openness among oncology providers to using mHealth technology as part of patient care, but concerns regarding implementation. Designing acceptable apps may be challenging and require involvement of key stakeholders, partnering with trustworthy institutions, and outcome-based research.