RESUMO
BACKGROUND: Electronic patient-reported outcomes (ePROs) assess patients' health status and quality of life, improving patient care and treatment effects, yet little is known about their use and adherence in routine patient care. AIMS: We evaluated the adherence of invasive breast cancer and ductal carcinoma in situ (DCIS) patients to ePROs follow-up and whether specific patient characteristics are related to longitudinal non-adherence. METHODS: Since November 2016, the Breast Center at Charité - Universitätsmedizin Berlin has implemented an ongoing prospective PRO routine program, requiring patients to complete ePROs assessments and consent to email-based follow-up in the first 12 months after therapy starts. Frequencies and summary statistics are presented. Multiple logistic regression models were performed to determine an association between patient characteristics and non-adherence. RESULTS: Out of 578 patients, 239 patients (41.3%, 95%CI: 37.3-45.5%) completed baseline assessment and all five ePROs follow-up during the first 12 months after therapy. On average, above 70% of those patients responded to the ePROs follow-up assessment. Adherence to the ePROs follow-up was higher during the COVID-19 pandemic than in the time periods before (47.4% (111/234) vs. 33.6% (71/211)). Factors associated with longitudinal non-adherence were younger age, a higher number of comorbidities, no chemotherapy, and a low physical functioning score in the EORTC QLQ-C30 at baseline. CONCLUSIONS: The study reveals moderate adherence to 12-month ePROs follow-up assessments in invasive early breast cancer and DCIS patients, with response rates ranging from 60 to 80%. Emphasizing the benefits for young patients and those with high disease burdens might further increase adherence.
Assuntos
Neoplasias da Mama , Cooperação do Paciente , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida , Humanos , Feminino , Neoplasias da Mama/tratamento farmacológico , Neoplasias da Mama/psicologia , Neoplasias da Mama/terapia , Pessoa de Meia-Idade , Estudos Longitudinais , Idoso , Estudos Prospectivos , Cooperação do Paciente/estatística & dados numéricos , Adulto , Seguimentos , Carcinoma Intraductal não Infiltrante/terapia , Carcinoma Intraductal não Infiltrante/psicologia , Carcinoma Intraductal não Infiltrante/tratamento farmacológico , COVID-19RESUMO
PURPOSE: To deliver patient-reported outcome (PRO) reference data for breast cancer and various other breast diseases to facilitate the interpretation of PRO scores during routine breast cancer treatment. METHODS: To determine reference baseline values for the PRO measures EORTC QLQ-C30 and EORTC QLQ-BR23, PRO data captured in the breast cancer centre at Charité - Universitätsmedizin Berlin from 2016 to 2021 were evaluated. As part of the clinical routine, ambulatory patients were asked to answer a digital survey regarding their medical history, current health status and health-related quality of life using the aforementioned questionnaires prior to their doctor's appointment in the outpatient breast clinic. Adjusted linear and variable dispersion beta regression models were used to compare different diagnosis groups. RESULTS: A total of 3689 patients were included in the digital PRO program, of which 1478 were eligible for this study; 729 had invasive breast cancer or ductal carcinoma in situ, 270 patients were diagnosed with fibroadenoma and 479 patients had other breast diseases such as cysts, mastopathy or abscesses. Overall, patients with breast cancer reported worse scores in almost all domains except for role functioning, sexual functioning and body image. Compared to previously published reference scores for early breast cancer, the current data show a more pronounced impact on perceived emotional and cognitive functioning. CONCLUSION: The results of this study are of high value for the interpretation of PROs and facilitate their use in clinical practice and clinical trials. The scores indicate an urgent need for psychosocial support prior to treatment.
Assuntos
Doenças Mamárias , Neoplasias da Mama , Carcinoma Intraductal não Infiltrante , Fibroadenoma , Doenças Mamárias/psicologia , Doenças Mamárias/terapia , Neoplasias da Mama/psicologia , Neoplasias da Mama/terapia , Carcinoma Intraductal não Infiltrante/psicologia , Carcinoma Intraductal não Infiltrante/terapia , Feminino , Fibroadenoma/psicologia , Fibroadenoma/terapia , Nível de Saúde , Humanos , Qualidade de Vida/psicologia , Análise de Regressão , Inquéritos e QuestionáriosRESUMO
Importance: The use of magnetic resonance imaging (MRI) in pretreatment planning of ductal carcinoma in situ (DCIS) remains controversial. Understanding changes in short-term health-related quality of life associated with breast MRI would allow for a more complete comparative effectiveness assessment. Objective: To assess whether there are changes in patient-reported quality of life associated with breast MRI among women diagnosed with DCIS. Design, Setting, and Participants: This cohort study was a substudy of a nonrandomized clinical trial conducted at 75 participating US institutions from March 2015 to April 2016. Women recently diagnosed with unilateral DCIS who were eligible for wide local excision and had a diagnostic mammogram within 3 months of study registration were included. A total of 355 women met the eligibility criteria and underwent the study MRI. Data analysis was performed from June 3, 2020, to July 1, 2021. Exposures: Participants underwent bilateral breast MRI within 30 days of study registration and before surgery. Information on patient-reported testing burden for breast MRI was collected after MRI and before surgery. Main Outcomes and Measures: The primary outcome of this substudy was the patient-reported testing burden of breast MRI, measured by the Testing Morbidities Index (TMI) summated scale score. The TMI is a 7-item instrument that evaluates the temporary changes in quality of life associated with imaging before, during, and after the test (0 represents the worst possible, 100 the hypothetical ideal test experience). Results: Of the 355 women who met the eligibility criteria, 244 (69%) completed both questionnaires and were included in this analysis. The median age was 59 years (range, 34-85 years). The mean MRI TMI summated scale score was 85.9 (95% CI, 84.6-87.3). Of the 244 women, 142 (58%) experienced at least some fear and anxiety before the examination, and 120 women (49%) experienced fear and anxiety during the examination. A total of 156 women (64%) experienced pain or discomfort during the examination. In multivariable analyses, greater test-related burden was associated with higher levels of cancer worry (regression coefficient, -2.75; SE, 0.94; P = .004). Conclusions and Relevance: In this cohort study, a clinically meaningful breast MRI testing burden among women with DCIS was revealed that was significantly associated with cancer worry. Understanding the potential quality-of-life reduction associated with MRI, especially when used in combination with mammography, may allow development of targeted interventions to improve the patient experience.
Assuntos
Neoplasias da Mama/diagnóstico por imagem , Carcinoma Ductal de Mama/diagnóstico por imagem , Carcinoma Intraductal não Infiltrante/diagnóstico por imagem , Imageamento por Ressonância Magnética/psicologia , Qualidade de Vida/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Ansiedade/psicologia , Neoplasias da Mama/patologia , Neoplasias da Mama/psicologia , Carcinoma Ductal de Mama/patologia , Carcinoma Ductal de Mama/psicologia , Carcinoma Intraductal não Infiltrante/patologia , Carcinoma Intraductal não Infiltrante/psicologia , Ensaios Clínicos como Assunto , Medo/psicologia , Feminino , Humanos , Imageamento por Ressonância Magnética/métodos , Pessoa de Meia-IdadeRESUMO
PURPOSE: To evaluate the acceptability and impact of 3D-printed breast models (3D-BMs) on treatment-related decisional conflict (DC) of breast cancer patients. METHODS: Patients with breast cancer were accrued in a prospective institutional review board-approved trial. All patients underwent contrast-enhanced breast magnetic resonance imaging (MRI). A personalized 3D-BM was derived from MRI. DC was evaluated pre- and post-3D-BM review. 3D-BM acceptability was assessed post-3D-BM review. RESULTS: DC surveys before and after 3D-BM review and 3D-BM acceptability surveys were completed by 25 patients. 3D-BM were generated in two patients with bilateral breast cancer. The mean patient age was 48.8 years (28-72). The tumor stage was Tis (7), 1 (8), 2 (8), and 3 (4). The nodal staging was 0 (19), 1 (7), and 3 (1). Tumors were unifocal (15), multifocal (8), or multicentric (4). Patients underwent mastectomy (13) and segmental mastectomy (14) with (20) or without (7) oncoplastic intervention. Neoadjuvant therapy was given to seven patients. Patients rated the acceptability of the 3D-BM as good/excellent in understanding their condition (24/24), understanding disease size (25/25), 3D-BM detail (22/25), understanding their surgical options (24/25), encouraging to ask questions (23/25), 3D-BM size (24/25), and impartial to surgical options (17/24). There was a significant reduction in the overall DC post-3D-BM review, indicating patients became more assured of their treatment choice (p = 0.002). Reduction post-3D-BM review was also observed in the uncertainty (p = 0.012), feeling informed about options (p = 0.005), clarity about values (p = 0.032), and effective (p = 0.002) Decisional Conflict Scale subscales. CONCLUSIONS: 3D-BMs are an acceptable tool to decrease DC in breast cancer patients.
Assuntos
Neoplasias da Mama/cirurgia , Técnicas de Apoio para a Decisão , Conhecimentos, Atitudes e Prática em Saúde , Imageamento por Ressonância Magnética/métodos , Mastectomia/estatística & dados numéricos , Participação do Paciente , Impressão Tridimensional/instrumentação , Adulto , Idoso , Neoplasias da Mama/patologia , Neoplasias da Mama/psicologia , Carcinoma Ductal de Mama/patologia , Carcinoma Ductal de Mama/psicologia , Carcinoma Ductal de Mama/cirurgia , Carcinoma Intraductal não Infiltrante/patologia , Carcinoma Intraductal não Infiltrante/psicologia , Carcinoma Intraductal não Infiltrante/cirurgia , Carcinoma Lobular/patologia , Carcinoma Lobular/psicologia , Carcinoma Lobular/cirurgia , Estudos de Viabilidade , Feminino , Seguimentos , Humanos , Mastectomia/psicologia , Pessoa de Meia-Idade , Prognóstico , Estudos ProspectivosRESUMO
BACKGROUND: Ductal carcinoma in situ (DCIS) is an in-situ (pre-cancerous) breast malignancy whereby malignant cells are contained within the basement membrane of the breast ducts. Increasing awareness that some low-risk forms of DCIS might remain indolent for many years has led to concern about overtreatment, with at least 3 clinical trials underway internationally assessing the safety of active monitoring for low-risk DCIS. This study aimed to understand healthcare professionals' (HCPs) views on the management options for patients with DCIS. METHODS: Qualitative study using semi-structured interviews with HCPs involved in the diagnosis and management of DCIS in Australia and New Zealand. Interviews were audio-recorded, transcribed and analysed thematically using Framework Analysis method. RESULTS: Twenty-six HCPs including 10 breast surgeons, 3 breast physicians, 6 radiation oncologists, and 7 breast care nurses participated. There was a strong overall consensus that DCIS requires active treatment. HCPs generally felt uncomfortable recommending active monitoring as a management option for low-risk DCIS as they viewed this as outside current standard care. Overall, HCPs felt that active monitoring was an unproven strategy in need of an evidence base; however, many acknowledged that active monitoring for low-risk DCIS could be appropriate for patients with significant co-morbidities or limited life expectancy. They believed that most patients would opt for surgery wherever possible. CONCLUSIONS: This study highlights the important need for robust randomised controlled trial data about active monitoring for women with low-risk DCIS, to provide HCPs with confidence in their management recommendations and decision-making.
Assuntos
Atitude do Pessoal de Saúde , Neoplasias da Mama/terapia , Carcinoma Intraductal não Infiltrante/terapia , Pessoal de Saúde/psicologia , Conduta Expectante , Adulto , Austrália , Neoplasias da Mama/psicologia , Carcinoma Intraductal não Infiltrante/psicologia , Feminino , Humanos , Masculino , Uso Excessivo dos Serviços de Saúde , Pessoa de Meia-Idade , Nova Zelândia , Enfermeiras e Enfermeiros/psicologia , Médicos/psicologia , Papel Profissional/psicologia , Relações Profissional-Paciente , Pesquisa Qualitativa , Radio-Oncologistas/psicologia , Cirurgiões/psicologiaRESUMO
COVID-19 has been officially declared as a pandemic by the WHO. Italy was the first European country to be strongly affected by this outbreak. All elective and health promotion activities were reduced. Accordingly, Italian Breast Units and breast cancer (BC) screening programs scaled down significantly their activities. The aim of this study was to evaluate measures that could potentially reduce the clinical impact of COVID-19 on BC patients. Temporary recommendations are needed that could assist specialists in preventing COVID-19 infection and optimizing resources for diagnosis and treatment of BC patients.
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Neoplasias da Mama/diagnóstico por imagem , Neoplasias da Mama/terapia , Infecções por Coronavirus , Procedimentos Cirúrgicos Eletivos/psicologia , Hospitais Universitários , Hospitais Urbanos , Mastectomia/psicologia , Pandemias , Pneumonia Viral , Recusa do Paciente ao Tratamento/psicologia , Protocolos de Quimioterapia Combinada Antineoplásica/uso terapêutico , Neoplasias da Mama/psicologia , Neoplasias da Mama/cirurgia , COVID-19 , Carcinoma/diagnóstico por imagem , Carcinoma/psicologia , Carcinoma/cirurgia , Carcinoma/terapia , Carcinoma Intraductal não Infiltrante/diagnóstico por imagem , Carcinoma Intraductal não Infiltrante/psicologia , Carcinoma Intraductal não Infiltrante/cirurgia , Terapia Combinada , Infecções por Coronavirus/epidemiologia , Infecções por Coronavirus/prevenção & controle , Infecções por Coronavirus/psicologia , Diagnóstico Tardio , Gerenciamento Clínico , Detecção Precoce de Câncer , Estrogênios , Feminino , Humanos , Mamografia , Programas de Rastreamento , Terapia Neoadjuvante , Neoplasias Hormônio-Dependentes/diagnóstico por imagem , Neoplasias Hormônio-Dependentes/psicologia , Neoplasias Hormônio-Dependentes/cirurgia , Neoplasias Hormônio-Dependentes/terapia , Pandemias/prevenção & controle , Pneumonia Viral/epidemiologia , Pneumonia Viral/prevenção & controle , Pneumonia Viral/psicologia , Cidade de Roma , Neoplasias de Mama Triplo Negativas/diagnóstico por imagem , Neoplasias de Mama Triplo Negativas/psicologia , Neoplasias de Mama Triplo Negativas/cirurgia , Neoplasias de Mama Triplo Negativas/terapiaRESUMO
BACKGROUND: Women with ductal carcinoma in situ (DCIS) report poor patient-clinician communication, and long-lasting confusion and anxiety about their treatment and prognosis. Research shows that patient-centred care (PCC) improves patient experience and outcomes. Little is known about the clinician experience of delivering PCC for DCIS. This study characterized communication challenges faced by clinicians, and interventions they need to improve PCC for DCIS. METHODS: Purposive and snowball sampling were used to recruit Canadian clinicians by specialty, gender, years of experience, setting, and geographic location. Qualitative interviews were conducted by telephone. Data were analyzed using constant comparison. Findings were mapped to a cancer-specific, comprehensive PCC framework to identify opportunities for improvement. RESULTS: Clinicians described approaches they used to address the PCC domains of fostering a healing relationship, exchanging information, and addressing emotions, but do not appear to be addressing the domains of managing uncertainty, involving women in making decisions, or enabling self-management. However, many clinicians described challenges or variable practices for all PCC domains but fostering a healing relationship. Clinicians vary in describing DCIS as cancer based on personal beliefs. When exchanging information, most find it difficult to justify treatment while assuring women of a good prognosis, and feel frustrated when women remain confused despite their efforts to explain it. While they recognize confusion and anxiety among women, clinicians said that patient navigators, social workers, support groups and high-quality information specific to DCIS are lacking. Despite these challenges, clinicians said they did not need or want communication interventions. CONCLUSIONS: Findings represent currently unmet opportunities by which to help clinicians enhance PCC for DCIS, and underscore the need for supplemental information and supportive care specific to DCIS. Future research is needed to develop and test communication interventions that improve PCC for DCIS. If effective and widely implemented, this may contribute to improved care experiences and outcomes for women diagnosed with and treated for DCIS.
Assuntos
Neoplasias da Mama/terapia , Carcinoma Intraductal não Infiltrante/terapia , Tomada de Decisões , Pessoal de Saúde/psicologia , Assistência Centrada no Paciente/métodos , Atitude do Pessoal de Saúde , Neoplasias da Mama/psicologia , Carcinoma Intraductal não Infiltrante/psicologia , Feminino , Pessoal de Saúde/estatística & dados numéricos , Humanos , Participação do Paciente , Assistência Centrada no Paciente/normas , Relações Profissional-Paciente , Pesquisa Qualitativa , Qualidade da Assistência à Saúde , Inquéritos e QuestionáriosRESUMO
PURPOSE: To determine the intermediate-term impact of diagnosis and treatment of ductal carcinoma in situ of the breast (DCIS) on health services utilization, we compared utilization by cases of DCIS to unaffected controls. METHODS: We identified a population-based cohort of Ontario females diagnosed with DCIS between 2010 and 2015. We matched 5 controls without any history of cancer to each case, on the date of diagnosis of the case (the index date), by age, annual mammography history, socioeconomic status, and comorbidity. We identified billing claims and hospital records, during the interval 13 to 60 months prior to, and subsequent to the index date, and computed rates per 100 person-years during both intervals, to conduct a difference-in-differences analysis. We used negative binomial regression to test if the change in rates in health services differed between cases and controls. RESULTS: Visits with a breast diagnosis code, and claims for breast surgery and imaging, were significantly increased among cases compared to controls (all p values < 0.0001) after DCIS;however, there was no increase in visits for anxiety or depression (RR 1.13 (95% CI 0.97, 1.32, p = 0.11), visits to psychiatrists (RR 1.07 (95% CI 0.82, 1.40) p = 0.6), or hospital procedures other than breast surgery (RR 1.10 (95% CI 0.88, 1.37) p = 0.4). CONCLUSIONS: DCIS is associated with more visits and procedures related to the breast compared to controls following diagnosis and treatment, but other health services utilization and visits related to anxiety and depression were not increased.
Assuntos
Neoplasias da Mama/patologia , Carcinoma Ductal de Mama/patologia , Carcinoma Intraductal não Infiltrante/patologia , Utilização de Instalações e Serviços/estatística & dados numéricos , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Idoso , Neoplasias da Mama/psicologia , Neoplasias da Mama/terapia , Carcinoma Ductal de Mama/psicologia , Carcinoma Ductal de Mama/terapia , Carcinoma Intraductal não Infiltrante/psicologia , Carcinoma Intraductal não Infiltrante/terapia , Estudos de Casos e Controles , Feminino , Seguimentos , Humanos , Mamografia , Pessoa de Meia-Idade , Prognóstico , Estudos RetrospectivosRESUMO
BACKGROUND: Breast-conserving surgery (BCS) and mastectomy have equivalent survival for ductal carcinoma in situ (DCIS), allowing patients to participate in selecting a personalized surgical option; however, this decision-making role can increase patient anxiety. Data evaluating patient satisfaction with their decision to undergo BCS versus mastectomy for the treatment of DCIS are limited. METHODS: Women with DCIS were enrolled in a population-based, state-wide cohort from 1997 to 2006. Participants were surveyed about their satisfaction with their surgical and reconstruction decisions. Quality-of-life (QoL) evaluations were performed with biennial follow-up surveys though 2016. Multivariable logistic regression modeling examined the relationship between type of surgery and reconstruction with patient satisfaction. RESULTS: Overall, 1537 women were surveyed, on average, 2.9 years following DCIS diagnosis. Over 90% reported satisfaction with their treatment decision regardless of surgery type. Women who underwent mastectomy with reconstruction were more likely to report lower levels of satisfaction than women who underwent BCS (odds ratio [OR] 2.98, 95% confidence interval [CI] 1.18-7.51, p < 0.01). However, over 80% of women who underwent mastectomies reported satisfaction with their reconstruction decision. Women without reconstruction had the highest levels of satisfaction, while women with implants were more likely to be dissatisfied (implant + autologous: OR 2.77, 95% CI 1.24-6.24; implant alone: OR 4.02, 95% CI 1.947-8.34, p ≤ 0.01). QoL scores were not associated with differences in surgical or reconstruction satisfaction at 5, 10, and 15 years following DCIS diagnosis. CONCLUSIONS: Women undergoing surgery for DCIS express satisfaction with their treatment decisions. Following mastectomy, most women are satisfied with their reconstruction decision, including women who did not undergo reconstruction.
Assuntos
Neoplasias da Mama , Carcinoma Intraductal não Infiltrante , Satisfação do Paciente , Idoso , Neoplasias da Mama/psicologia , Neoplasias da Mama/cirurgia , Carcinoma Intraductal não Infiltrante/psicologia , Carcinoma Intraductal não Infiltrante/cirurgia , Estudos de Coortes , Feminino , Humanos , Estudos Longitudinais , Mastectomia , Mastectomia Segmentar , Pessoa de Meia-Idade , Satisfação Pessoal , Qualidade de VidaRESUMO
BACKGROUND: Patient-centred care (PCC) improves health-care experiences and outcomes. Women with ductal carcinoma in situ (DCIS) and clinicians have reported communication difficulties. Little prior research has studied how to improve communication and PCC for DCIS. OBJECTIVE: This study explored how to achieve PCC for DCIS. DESIGN: Canadian women treated for DCIS from five provinces participated in semi-structured focus groups based on a 6-domain cancer-specific PCC framework to discuss communication about DCIS. Data were analysed using constant comparative technique. SETTING AND PARTICIPANTS: Thirty-five women aged 30 to 86 participated in five focus groups at five hospitals. RESULTS: Women said their clinicians used multiple approaches for fostering a healing relationship; however, most described an absence of desired information or behaviour to exchange information, respond to emotions, manage uncertainty, make decisions and enable self-management. Most women were confused by terminology, offered little information about the risks of progression/recurrence, uninformed about treatment benefits and risks, frustrated with lack of engagement in decision making, given little information about follow-up plans or self-care advice, and received no acknowledgement or offer of emotional support. DISCUSSION AND CONCLUSIONS: By comparing the accounts of women with DCIS to a PCC framework, we identified limitations and inconsistencies in women's lived experience of communication about DCIS, and approaches by which clinicians can more consistently achieve PCC for DCIS. Future research should develop and evaluate informational tools to support PCC for DCIS.
Assuntos
Neoplasias da Mama/terapia , Carcinoma Intraductal não Infiltrante/terapia , Comunicação , Tomada de Decisões , Assistência Centrada no Paciente/normas , Relações Médico-Paciente , Adulto , Idoso , Idoso de 80 Anos ou mais , Neoplasias da Mama/psicologia , Canadá , Carcinoma Intraductal não Infiltrante/psicologia , Emoções , Feminino , Grupos Focais , Humanos , Pessoa de Meia-Idade , Educação de Pacientes como Assunto , Preferência do Paciente , Pesquisa QualitativaRESUMO
PURPOSE: Despite having an excellent prognosis, patients with ductal carcinoma in situ (DCIS) report significant anxiety and depression following diagnosis. This study evaluated psychological morbidity using the Edmonton Symptom Assessment Scale (ESAS) in patients with DCIS compared with women with early-stage invasive breast cancer (EIBC) receiving radiotherapy (RT). METHODS: We identified patients diagnosed with DCIS or EIBC (stage I or II breast cancer) from 2011 to 2017 who had at least one ESAS completed pre- and post-RT. Data on systemic treatment, radiation, patient demographics, and disease stage were extracted from existing databases. Psychological morbidity was evaluated through measurement of depression, anxiety, and overall wellbeing within the ESAS. The Wilcoxon rank-sum test or chi-square test was performed for continuous or categorical variables. RESULTS: This study included 137 women with DCIS and 963 women with EIBC. ESAS was completed on average 28 days before RT (baseline) and 142 days after RT. Baseline ESAS scores showed significantly higher rates of depression among women with EIBC compared with those with DCIS (p = 0.006). Patients with EIBC also reported higher levels of anxiety and lower overall wellbeing than patients with DCIS, but this difference was not statistically significant. Post-RT ESAS scores showed significantly higher anxiety in patients with EIBC compared with DCIS (p = 0.049). Post-RT measures of anxiety and overall wellbeing were higher in patients with EIBC but differences were not statistically significant. CONCLUSION: Women with DCIS experience relatively less psychological morbidity than women with EIBC, pre- and post-RT.
Assuntos
Ansiedade/etiologia , Neoplasias da Mama/psicologia , Neoplasias da Mama/radioterapia , Carcinoma Ductal de Mama/psicologia , Carcinoma Intraductal não Infiltrante/psicologia , Depressão/etiologia , Adulto , Idoso , Neoplasias da Mama/patologia , Carcinoma Ductal de Mama/patologia , Feminino , Humanos , Pessoa de Meia-Idade , Estadiamento de Neoplasias , Prognóstico , Psicometria/métodos , Estudos Retrospectivos , Avaliação de Sintomas/métodosRESUMO
BACKGROUND: Most breast cancer patients undergoing mastectomy are candidates for breast reconstruction. Deciding about breast reconstruction is complex and the preference-sensitive nature of this decision requires an approach of shared decision making between patient and doctor. Women considering breast reconstruction have expressed a need for decision support. We developed an online patient decision aid (pDA) to support decision making in women considering immediate breast reconstruction. The primary aim of this study is to assess the impact of the pDA in reducing decisional conflict, and more generally, on the decision-making process and the decision quality. Additionally, we will investigate the pDA's impact on health outcomes, explore predictors, and assess its cost-effectiveness. METHODS: A multicenter, two-armed randomized controlled trial (1:1) will be conducted. Women with breast cancer or ductal carcinoma in situ who will undergo a mastectomy and are eligible for immediate breast reconstruction will be invited to participate. The intervention group will receive access to the online pDA, whereas the control group will receive a widely available free information leaflet on breast reconstruction. Participants will complete online questionnaires at: baseline (T0), 1 week after consultation with a plastic surgeon (T1), and 3 (T2) and 12 months (T3) after surgery. The primary outcome is decisional conflict. Secondary outcomes include other measures reflecting the decision-making process and decision quality (e.g., decision regret), patient-reported health outcomes (e.g., satisfaction with the breasts) and costs. DISCUSSION: This study will provide evidence about the impact of an online pDA for women who will undergo mastectomy and are deciding about breast reconstruction. It will contribute to the knowledge on how to optimally support women in making this difficult decision. TRIAL REGISTRATION: This study is retrospectively registered at ClinicalTrials.gov ( NCT03791138 ).
Assuntos
Neoplasias da Mama/cirurgia , Carcinoma Intraductal não Infiltrante/cirurgia , Técnicas de Apoio para a Decisão , Mamoplastia , Mastectomia , Neoplasias da Mama/psicologia , Carcinoma Intraductal não Infiltrante/psicologia , Protocolos Clínicos , Análise Custo-Benefício , Tomada de Decisões , Feminino , Humanos , Pessoa de Meia-Idade , Participação do Paciente , Encaminhamento e Consulta , Estudos Retrospectivos , Inquéritos e QuestionáriosRESUMO
PURPOSE: Women with ductal carcinoma in situ (DCIS) experience lingering confusion and anxiety, and may use the Internet for supplemental information. This study assessed the content and quality of DCIS information on the Internet. METHODS: We searched Google for English-language, publicly available DCIS information tools published from 2010 to current by non-profit organizations. We summarized tool characteristics, DCIS labels, and information important to women with DCIS corresponding to domains of a patient-centred care (PCC) framework. Tool quality was appraised with the DISCERN instrument. RESULTS: Of 39 tools included, most were plain language summaries published since 2016. Tools employed a median of 2.0 labels (range 1.0 to 5.0) for DCIS, most frequently non-invasive breast cancer (29, 74.4%), abnormal cells (14, 35.9%), pre-cancer (14, 35.9%), and early form of breast cancer (13, 33.3%). Tools addressed a median of 4.0 (range 2.0 to 5.0) PCC domains. Few tools contained content in the domains of fostering the relationship (30.8%), addressing emotions (41.0%), or follow-up (41.0%); 74.4% noted the risk of progression or recurrence but provided vague details. Tools were assessed as high (25.6%), moderate (48.7%), and low (25.6%) quality. CONCLUSIONS: Few DCIS information tools available to women on the Internet meet quality criteria for consumer health information or address concerns of importance to women with DCIS. By identifying a range of poorly defined terms used to label DCIS, and specific content domains that were lacking, this study identified how existing tools could be improved, and identified higher-quality tools that clinicians can use when discussing DCIS with patients.
Assuntos
Neoplasias da Mama/epidemiologia , Carcinoma Intraductal não Infiltrante/epidemiologia , Comportamento de Busca de Informação , Internet , Ansiedade , Neoplasias da Mama/psicologia , Carcinoma Intraductal não Infiltrante/psicologia , Tomada de Decisões , Emoções , Feminino , Sistemas de Informação em Saúde , Humanos , Assistência Centrada no Paciente , Mídias Sociais/normasRESUMO
BACKGROUND: The National Comprehensive Cancer Network (NCCN) Distress Thermometer (DT) uses a 10-point scale (in which 0 indicates no distress and 10 indicates extreme distress) to measure patient-reported distress. In the current study, the authors sought to examine the relationship between treatment and NCCN DT scores in patients with breast cancer over time. METHODS: The authors included women aged ≥18 years who were diagnosed with stage 0 to stage IV breast cancer (according to the seventh edition of the American Joint Commission on Cancer staging system) at a 3-hospital health system from January 2014 to July 2016. Linear mixed effects models adjusted for covariates including stage of disease, race/ethnicity, insurance, and treatment sequence (neoadjuvant vs adjuvant) were used to estimate adjusted mean changes in the DT score (MSCs) per week for patients undergoing lumpectomy, mastectomy only, and mastectomy with reconstruction (MR). RESULTS: The authors analyzed 12,569 encounters for 1029 unique patients (median score, 4; median follow-up, 67 weeks). Patients treated with MR (118 patients) were younger and more likely to be married, white, and privately insured compared with patients undergoing lumpectomy (620 patients) and mastectomy only (291 patients) (all P < .01). After adjusting for covariates, distress scores were found to decline significantly across all 3 surgical cohorts, with patients undergoing MR found to have both the most preoperative distress and the greatest decline in distress prior to surgery (MSC/week: -0.073 for MR vs -0.031 for lumpectomy vs -0.033 for mastectomy only; P = .001). Neoadjuvant therapy was associated with a longitudinal decline in distress for patients treated with lumpectomy (-1.023) and mastectomy only (-0.964). Over time, ductal carcinoma in situ (-0.503) and black race (-1.198) were found to be associated with declining distress among patients treated with lumpectomy and MR, respectively, whereas divorced patients who were treated with mastectomy only (0.948) and single patients treated with lumpectomy (0.476) experienced increased distress (all P < .05). CONCLUSIONS: When examined longitudinally in consecutive patients, the NCCN DT can provide patient-reported data to inform expectations and guide targeted support for patients with breast cancer.
Assuntos
Neoplasias da Mama/diagnóstico , Neoplasias da Mama/psicologia , Angústia Psicológica , Idoso , Neoplasias da Mama/terapia , Carcinoma Intraductal não Infiltrante/diagnóstico , Carcinoma Intraductal não Infiltrante/psicologia , Carcinoma Intraductal não Infiltrante/terapia , Feminino , Humanos , Seguro Saúde , Mamoplastia/psicologia , Estado Civil , Mastectomia/psicologia , Mastectomia Segmentar , Pessoa de Meia-IdadeAssuntos
Neoplasias da Mama/cirurgia , Carcinoma Intraductal não Infiltrante/cirurgia , Mastectomia Segmentar/psicologia , Preferência do Paciente , Adulto , Fatores Etários , Idoso , Idoso de 80 Anos ou mais , Neoplasias da Mama/psicologia , Carcinoma Intraductal não Infiltrante/psicologia , Tomada de Decisões , Feminino , Humanos , Mamoplastia/psicologia , Mamoplastia/estatística & dados numéricos , Mastectomia Segmentar/estatística & dados numéricos , Pessoa de Meia-Idade , Estudos ProspectivosRESUMO
BACKGROUND: The purpose of this study was to evaluate the self-reported aesthetic outcome of breast conservation therapy in a generalized sample of patients, and to describe potential barriers to referral for partial breast reconstruction. METHODS: Consecutive breast conservation therapy patients completing radiotherapy over a 1-year period at a regional cancer center were identified. Eligible patients were contacted by means of mail/e-mail and invited to participate. Participants completed the BREAST-Q breast conservation therapy module along with a questionnaire examining feelings about breast reconstruction. Multiple regression analysis was performed using the satisfaction with breasts scale as the dependent variable. RESULTS: Surveys were completed by 185 of 592 eligible participants (response rate, 31.3 percent; mean age, 61 years) an average of 38 months after lumpectomy. The mean score for the BREAST-Q satisfaction with breasts scale was 59 of 100. Younger age (p = 0.038), lumpectomy reexcision (p = 0.018), and lumpectomy at a nonacademic center (p = 0.026) were significantly associated with lower satisfaction. Bra size, months from lumpectomy, and tumor quadrant/size were not significantly associated with satisfaction (p > 0.05). The most common statements regarding reconstruction were "I don't feel the need for it" (60.0 percent), "I don't like the thought of having breast implants" (22.7 percent), and "I don't want any more surgeon/doctor visits" (22.2 percent). Before lumpectomy, only 1.6 percent had a consultation for reconstruction, and only 22.7 percent were aware of this option. If offered, 33.1 percent of patients would have attended this consultation. CONCLUSION: There is an unmet demand for partial breast reconstruction, with an opportunity to advocate and increase awareness on behalf of patients undergoing breast conservation therapy.
Assuntos
Mamoplastia/psicologia , Mastectomia Segmentar/psicologia , Medidas de Resultados Relatados pelo Paciente , Satisfação do Paciente/estatística & dados numéricos , Encaminhamento e Consulta , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Neoplasias da Mama/psicologia , Neoplasias da Mama/cirurgia , Carcinoma Ductal de Mama/psicologia , Carcinoma Ductal de Mama/cirurgia , Carcinoma Intraductal não Infiltrante/psicologia , Carcinoma Intraductal não Infiltrante/cirurgia , Carcinoma Lobular/psicologia , Carcinoma Lobular/cirurgia , Estudos Transversais , Estética , Feminino , Humanos , Pessoa de Meia-Idade , Estudos Retrospectivos , Autorrelato , Adulto JovemRESUMO
INTRODUCTION: Contralateral prophylactic mastectomy (CPM) rates are rising, with fear implicated as a contributing factor. This study used a contralateral breast cancer (CBC) risk stratification tool to assess whether the selection of CPM is reflective of future CBC risk. PATIENTS AND METHODS: This retrospective study evaluated 404 women with unilateral breast cancer treated with breast conservation, unilateral mastectomy, or bilateral mastectomy within a single multidisciplinary clinic. Women were evaluated by the Manchester risk tool to calculate lifetime CBC risk. Logistic regression analysis was used to evaluate whether CBC risk was associated with CPM, and the clinical rationale for prophylactic mastectomy justification was recorded. RESULTS: Sixty-two percent underwent breast conservation, 18% unilateral mastectomy, and 20% bilateral mastectomy. In the CPM cohort, 36% had > 20% calculated lifetime CBC risk. In the invasive cohort, younger age (odds ratio 2.65, P < .0001) and genetic mutation positivity (odds ratio 35.39, P = .019) independently predicted CPM. Other contributing factors included benign contralateral breast findings (29%) and recommendations against breast conservation due to disease burden (28%). Six percent selected CPM as a result of an unsubstantiated fear regarding breast cancer. CONCLUSION: The majority of women (63%) who selected CPM had < 20% CBC risk. In these lower-risk women selecting CPM, factors increasing reasonable fear dominated surgical choice (81% of this subset).
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Carcinoma Ductal de Mama/cirurgia , Carcinoma Intraductal não Infiltrante/cirurgia , Medo/psicologia , Segunda Neoplasia Primária/prevenção & controle , Mastectomia Profilática/estatística & dados numéricos , Neoplasias Unilaterais da Mama/cirurgia , Adulto , Fatores Etários , Idoso , Biópsia , Mama/patologia , Mama/cirurgia , Carcinoma Ductal de Mama/psicologia , Carcinoma Intraductal não Infiltrante/psicologia , Feminino , Humanos , Mastectomia Segmentar/estatística & dados numéricos , Pessoa de Meia-Idade , Segunda Neoplasia Primária/psicologia , Mastectomia Profilática/psicologia , Estudos Retrospectivos , Medição de Risco , Neoplasias Unilaterais da Mama/psicologiaRESUMO
BACKGROUND: To assess emotional distress, anxiety and stress reactions in breast cancer (BC) patients before the follow-up visits. STUDY DESIGN: Between September 2009 and December 2011 a total of 284 patients completed the BC-psychosocial assessment screening scale (PASS) and a questionnaire about their views of follow-up after treatment for BC. RESULTS: Of the patients 64% reported low level of distress on the BC-PASS. The mean scores on the physical well-being scale was 5.3, the satisfaction/sense of coherence scale 7.4, and the emotional distress scale 8.1. Women rated mammography as the most important component (71%), followed by breast ultrasound (63%) and the consultation with the physician (60%). Of the patients 94% were satisfied with the current follow-up regimen. CONCLUSIONS: In this series BC patients were satisfied with their aftercare. Mammography was thought to be the most important component of aftercare. Patient-reported outcomes should be taken into account when planning follow-up.
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Assistência ao Convalescente/psicologia , Neoplasias da Mama/psicologia , Neoplasias da Mama/terapia , Carcinoma Ductal/psicologia , Carcinoma Ductal/terapia , Satisfação do Paciente , Transtornos de Estresse Pós-Traumáticos/psicologia , Adulto , Idoso , Ansiedade/diagnóstico , Ansiedade/psicologia , Áustria , Carcinoma Intraductal não Infiltrante/psicologia , Carcinoma Intraductal não Infiltrante/terapia , Feminino , Seguimentos , Humanos , Pessoa de Meia-Idade , Relações Médico-Paciente , Senso de Coerência , Transtornos de Estresse Pós-Traumáticos/diagnóstico , Inquéritos e Questionários , Ultrassonografia Mamária/psicologiaRESUMO
The aim of this study was to evaluate the mental health consumption among patients with early-stage breast cancer in two radiation oncology departments in two countries (USA and Italy). Data were extracted from the medical records of consecutive patients treated between 2014 and 2015 in two centers. Extracted data included patient's demographics, treatment, referral to psychological supportive care programs, and prescribed psychotropic drugs. Data from the two centers were compared using Student's t, Wilcoxon, Fisher's exact, and Jonckheere-Terpstra tests. Adjusted relative risks (RR) were estimated using Poisson regression. A total of 231 (Italy = 110, USA = 121) patients were included, with a mean age of 60 years. The crude rate of psychological supportive care visits was similar in the US versus the Italian cohort (28.9 vs. 21.8%, p = 0.23). The crude rate of prescribed psychotropic drug was higher in the US cohort versus Italian cohort (43.8 vs. 18.2%, p < 0.0001). These differences remained significant after adjusting for breast cancer subtype, stage, and treatment (RR 1.8, 95 CI 1.17-2.76). Between 20 and 30% of patients receive psychological supportive care during treatment for breast cancer. The use of psychotropic medication was higher in the US cohort than the cohort from Italy. The reasons for these differences might be related to social and cultural differences and the method of prescribing medication.
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Neoplasias da Mama/complicações , Carcinoma Ductal de Mama/complicações , Carcinoma Intraductal não Infiltrante/complicações , Carcinoma Lobular/complicações , Transtornos Psicóticos/tratamento farmacológico , Psicotrópicos/uso terapêutico , Neoplasias da Mama/psicologia , Neoplasias da Mama/terapia , Carcinoma Ductal de Mama/psicologia , Carcinoma Ductal de Mama/terapia , Carcinoma Intraductal não Infiltrante/psicologia , Carcinoma Intraductal não Infiltrante/terapia , Carcinoma Lobular/psicologia , Carcinoma Lobular/terapia , Estudos de Coortes , Terapia Combinada , Feminino , Seguimentos , Humanos , Pessoa de Meia-Idade , Cuidados Paliativos , Prognóstico , Transtornos Psicóticos/etiologia , Transtornos Psicóticos/psicologia , Grupos RaciaisRESUMO
IMPORTANCE: Breast reconstruction has the potential to improve a person's body image and quality of life but has important risks. Variations in who undergoes breast reconstruction have led to questions about the quality of patient decisions. OBJECTIVE: To assess the quality of patient decisions about breast reconstruction. DESIGN, SETTING, AND PARTICIPANTS: A prospective, cross-sectional survey study was conducted from June 27, 2012, to February 28, 2014, at a single, academic, multidisciplinary oncology clinic among women planning to undergo mastectomy for stage I to III invasive ductal or lobular breast cancer, ductal carcinoma in situ, or prophylaxis. EXPOSURES: Mastectomy only and mastectomy with reconstruction. MAIN OUTCOME AND MEASURES: Knowledge, as ascertained using the Decision Quality Instrument; preference concordance, based on rating and ranking of key attributes; and decision quality, defined as having knowledge of 50% or more and preference concordance. RESULTS: During the 20-month period, 214 patients were eligible, 182 were approached, and 32 missed. We enrolled 145 patients (79.7% enrollment rate), and received surveys from 131 patients (72.0% participation rate). Five participants became ineligible. The final study population was 126 patients. Among the 126 women in the study (mean [SD] age, 53.2 [12.1] years), the mean (SD) knowledge score was 58.5% (16.2%) and did not differ by treatment group (mastectomy only, 55.2% [15.0%]; mastectomy with reconstruction, 60.5% [16.5%]). A total of 82 of 123 participants (66.7%) had a calculated treatment preference of mastectomy only; 39 of these women (47.6%) underwent mastectomy only. A total of 41 participants (32.5%) had a calculated treatment preference of mastectomy with reconstruction; 36 of these women (87.8%) underwent mastectomy with reconstruction. Overall, 52 of 120 participants (43.3%) made a high-quality decision. In multivariable analysis, white race/ethnicity (odds ratio [OR], 2.72; 95% CI, 1.00-7.38; P = .05), having private insurance (OR, 1.61; 95% CI, 1.35-1.93; P < .001), having a high school education or less (vs some college) (OR, 4.84; 95% CI, 1.22-19.21; P = .02), having a college degree (vs some college) (OR, 1.95; 95% CI, 1.53-2.49; P < .001), and not having a malignant neoplasm (eg, BRCA carriers) (OR, 3.13; 95% CI, 1.25-7.85; P = .01) were independently associated with making a high-quality decision. CONCLUSIONS AND RELEVANCE: A minority of patients undergoing mastectomy in a single academic center made a high-quality decision about reconstruction. Shared decision making is needed to support decisions about breast reconstruction.