RESUMO
BACKGROUND: Accurate variant classification and relaying reclassified results to patients is critical for hereditary cancer care delivery. Over a 5- to 10-year period, 6%-15% of variants undergo reclassification. As the frequency of reclassifications increases, the issue of whether, how, when, and which providers should recontact patients becomes important but remains contentious. METHODS: The authors used inductive thematic analysis to analyze open-ended comments offered by oncologists and genetic counselors (GCs) from a large national survey. RESULTS: Of the 634 oncologists and cancer GCs, 126 (20%) offered substantive free-text comments. Four thematic areas emerged: 1) ambiguity over professional responsibility to recontact, 2) logistical challenges with recontact, 3) importance of inter-institutional communication, and 4) suggested solutions. Some oncologists felt that laboratories, not them, are responsible for recontact; others believed that ordering providers/GCs were responsible; GCs readily acknowledged their own responsibility in recontact but added important caveats. Besides the lack of up-to-date patient contact information, providers raised unique challenges with recontact: financial instability of laboratories, lack of clinical resources, contacting family members, and accumulating burden of reclassifications. There were numerous calls for developing practice guidelines on prioritizing variants for recontact and discussion on whether duty for recontact may be fulfilled via unidirectional, low touch modalities. Potential solutions to recontact including national databases and patient facing databases were discussed. CONCLUSIONS: The authors confirm previous themes of stakeholder opinions and add previously unreported contextual details to qualify those themes. Clarifying provider responsibilities through professional guidelines for reclassification and recontact addressing the subthemes identified here will better serve all constituencies.
Assuntos
Aconselhamento Genético , Neoplasias , Humanos , Neoplasias/genética , Inquéritos e Questionários , Testes Genéticos , Oncologistas , Feminino , Masculino , Predisposição Genética para Doença , Dever de RecontatarRESUMO
Shared decision making (SDM) between health care professionals and patients is essential to help patients make well informed choices about lung cancer screening (LCS). Patients who participate in SDM have greater LCS knowledge, reduced decisional conflict, and improved adherence to annual screening compared with patients who do not participate in SDM. SDM tools are acceptable to patients and clinicians. The importance of SDM in LCS is emphasized in recommendations from professional organizations and highlighted as a priority in the 2022 President's Cancer Panel Report. The updated 2022 national coverage determination from the Centers for Medicare & Medicaid Services reaffirms the value of SDM in offering LCS to eligible beneficiaries. The Shared Decision-Making Task Group of the American Cancer Society National Lung Cancer Roundtable undertook a group consensus process to identify priorities for research and implementation related to SDM for LCS and then evaluated current knowledge in these areas. Priority areas included: (1) developing feasible, adaptable SDM training programs for health care professionals; (2) understanding the impact of alternative health system LCS models on SDM practice and outcomes; (3) developing and evaluating new patient decision aids for use with diverse populations and in varied settings; (4) offering conceptual clarity about what constitutes a high-quality decision and developing appropriate quality measures; and (5) studying the use of prediction-augmented screening to support SDM in practice. Gaps in current research in all areas were observed. The authors conclude with a research and implementation agenda to advance the quality and implementation of SDM for persons who might benefit from LCS.
RESUMO
BACKGROUND: The objective of this study was to evaluate the efficacy of an in-person, small-group mammography video discussion (SMVD) intervention on mammography uptake among nonadherent Chinese American immigrant women. METHODS: Women (N = 956) were randomized into either an SMVD group, where Chinese-speaking community health workers (CHWs) used an effective, culturally appropriate video to discuss mammography, or a video-only group, which viewed the cultural video sent by mail. Outcomes were mammography uptake at 6 months and 21 months postintervention. RESULTS: Women in both groups increased mammography uptake, and an outcome analysis revealed no group differences (adjusted odds ratio [AOR], 1.18; 95% confidence interval [CI], .68-2.06). Overall, 61.2% of the SMVD group and 55.3% of the video-only group had at least one mammogram during the 21-month follow-up period. When considering attendance to the SMVD, SMVD attendees had higher mammography uptake than the video-only group (AOR, 1.51; 95% CI, 1.19-1.92), and SMVD nonattendees had lower mammography uptake than the video-only group (AOR, .33; 95% CI, .22-.50). CONCLUSIONS: Both intervention strategies were associated with increased mammography uptake. The authors observed that the increase in use was greater among women who participated in the SMVD session compared with those who viewed the cultural video only. Future research may explore a virtual SMVD intervention for higher session attendance and increased mammography uptake (ClinicalTrials.gov identifier NCT01292200).
RESUMO
BACKGROUND: Little is known about how screening facilities are meeting the requirements for the reimbursement of lung cancer screening from the Centers for Medicare & Medicaid Services (CMS), including 1) the collection and submission of data to the CMS-approved registry (American College of Radiology [ACR] Lung Cancer Screening Registry), 2) the verification of a counseling and shared decision-making (SDM) visit having occurred as part of the written order for lung cancer screening with low-dose computed tomography, and 3) the offering of smoking cessation interventions. METHODS: The authors identified facilities in a southwestern state that were listed by either the ACR Lung Cancer Screening Registry or the GO2 Foundation Centers of Excellence. To select facilities, they used 2 purposive sampling approaches: maximum variation sampling and snowball sampling. They surveyed facilities from February to November 2019. RESULTS: There were 87 facilities contacted, and a total of 63 facilities representing 32 counties across Texas completed the survey. Nearly all facilities used Lung-RADS to classify nodules (92%; n = 58) and submitted data to a CMS-approved registry (92%; n = 57). Most facilities verified that the counseling and SDM visit had occurred (86%; n = 54). Although slightly more than half of the facilities reported always providing self-help cessation materials (68%; n = 42), similar or higher proportions of facilities reported that they never referred smokers to onsite cessation services (68%; n = 42) or quitlines (77%; n = 47), provided cessation counseling (81%; n = 50), or recommended medications (85%; n = 52). CONCLUSIONS: In general, screening facilities are meeting CMS requirements for screening, but they are struggling to offer smoking cessation interventions other than providing self-help materials.
Assuntos
Neoplasias Pulmonares , Abandono do Hábito de Fumar , Idoso , Estudos Transversais , Detecção Precoce de Câncer/métodos , Humanos , Neoplasias Pulmonares/diagnóstico por imagem , Medicare , Abandono do Hábito de Fumar/métodos , Tomografia Computadorizada por Raios X/métodos , Estados Unidos/epidemiologiaRESUMO
BACKGROUND: Young adults and other working-age adults with cancer are at risk for cancer-related financial toxicity (FT), including material hardships, depletion of coping resources, and psychological burden. This study compares FT domains in young adults (18-39 years old) (YAs), other working-age adults (40-64 years old), and older adults (≥65 years old) receiving cancer care. METHODS: A total of 311 adults were surveyed using the multi-domain Economic Strain and Resilience in Cancer instrument measuring FT (0-10 score indicating least to greatest FT; score ≥5 severe FT). Participants were receiving ambulatory care from March-September 2019. Associations of age with overall FT and material hardship, coping resource depletion, and psychological burden FT domains were tested using Kruskal-Wallis and χ2 tests and multivariable generalized linear models with gamma distribution. RESULTS: YAs (median age, 31.5 years) comprised 9.6% of the sample; other working-age adults comprised 56.9%. Overall, material, coping, and psychological FT scores were worse in younger age adults versus older adults (P < .001 in all multivariable models). Compared with older adults, younger age adults demonstrated worse material hardship (median scores, 3.70 vs 4.80 vs 1.30 for YAs, other working-age, and older adults, respectively; P < .001), coping resource depletion (4.50 vs 3.40 vs 0.80; P < .001), and psychological burden (6.50 vs 7.00 vs 1.00; P < .001). Fifty percent of YAs had severe overall FT versus 40.7% of other working-age adults and 9.6% of older adults (P < .001). CONCLUSIONS: Younger age adults with cancer bore disproportionate FT. Interventions to address unmet needs are critical components for addressing FT in this population.
Assuntos
Estresse Financeiro , Neoplasias , Adaptação Psicológica , Adolescente , Adulto , Idoso , Efeitos Psicossociais da Doença , Gastos em Saúde , Humanos , Pessoa de Meia-Idade , Neoplasias/psicologia , Inquéritos e Questionários , Adulto JovemRESUMO
BACKGROUND: Decision aids (DAs) can improve knowledge for prostate cancer treatment. However, the relative effects of DAs delivered within the clinical encounter and in more diverse patient populations are unknown. A multicenter cluster randomized controlled trial with a 2×2 factorial design was performed to test the effectiveness of within-visit and previsit DAs for localized prostate cancer, and minority men were oversampled. METHODS: The interventions were delivered in urology practices affiliated with the NCI Community Oncology Research Program Alliance Research Base. The primary outcome was prostate cancer knowledge (percent correct on a 12-item measure) assessed immediately after a urology consultation. RESULTS: Four sites administered the previsit DA (39 patients), 4 sites administered the within-visit DA (44 patients), 3 sites administered both previsit and within-visit DAs (25 patients), and 4 sites provided usual care (50 patients). The median percent correct in prostate cancer knowledge, based on the postvisit knowledge assessment after the intervention delivery, was as follows: 75% for the pre+within-visit DA study arm, 67% for the previsit DA only arm, 58% for the within-visit DA only arm, and 58% for the usual-care arm. Neither the previsit DA nor the within-visit DA had a significant impact on patient knowledge of prostate cancer treatments at the prespecified 2.5% significance level (P = .132 and P = .977, respectively). CONCLUSIONS: DAs for localized prostate cancer treatment provided at 2 different points in the care continuum in a trial that oversampled minority men did not confer measurable gains in prostate cancer knowledge.
Assuntos
Participação do Paciente , Neoplasias da Próstata , Tomada de Decisões , Técnicas de Apoio para a Decisão , Humanos , Masculino , Preferência do Paciente , Neoplasias da Próstata/terapia , Encaminhamento e ConsultaRESUMO
BACKGROUND: We measured the importance patients with gastrointestinal cancer and health care providers place on treatment outcomes, quality of life, and costs. METHODS: This cross-sectional survey study was conducted between June 1, 2020 and November 30, 2020. We identified surviving patients who had been treated or were anticipating treatment for pancreatic or gastric cancer at our single institution from January 1, 2000 through January 31, 2020. Surveys assessed the importance patients and providers placed on outcomes, well-being, costs, and experiences. Surveys measured how these values had changed over time. We compared the importance patients and providers place on each of the attributes of value. RESULTS: A total of 383 patients and 164 providers responded. Providers felt experience, emotional well-being, and costs were more important than patients themselves did (all p < 0.05). Patients more commonly reported that survival had become more important to them over time, while providers believed that emotional well-being, experience, and costs had become more important to patients (all p < 0.05). Postoperative patients ranked functional well-being as more important than preoperative patients did (p = 0.031). Patients of lower income and education levels more reported concerns of costs over the course of their care (both p < 0.05). Younger age was associated with concern for direct (r = -0.167, p = 0.004) and indirect costs (r = -0.318, p < 0.001). CONCLUSIONS: Although there are consistencies amongst the views of cancer patients and providers, there remain discordances in the perception of value. Patients' values differed across their treatment and survivorship course. These data demonstrate the importance of accounting for multistakeholder perspectives in assessments of value in health care.
Assuntos
Neoplasias , Qualidade de Vida , Estudos Transversais , Pessoal de Saúde , Humanos , Neoplasias/terapia , Qualidade de Vida/psicologia , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Conflicting breast cancer screening recommendations have the potential to diminish informed decision making about screening. OBJECTIVE: We examined the knowledge, attitudes, and intentions related to divergent recommendations for breast cancer screening among racially/ethnically diverse women. DESIGN: We used a multimethod study design employing focus groups and questionnaires. Focus groups included: (1) two 10-min presentations on the national screening recommendations and the potential benefits and harms of screening and (2) an interactive discussion. Data were collected: 8/3/2017 to 11/19/2019. Analysis occurred from 1/21/2019 to 7/24/2020. PARTICIPANTS: Participants were (1) women 40-75 years; (2) English or Spanish speaking; (3)self-identified as Latina, Black, or non-Latina White; and (4) no known increased risk for breast cancer. MAIN MEASURES: Main outcomes were participants' knowledge and perceptions of benefits and harms of screening mammography and their screening intentions. Focus groups were transcribed and analyzed using a qualitative descriptive approach. Quantitative data were summarized using descriptive statistics. KEY RESULTS: One hundred thirty-four women (n=52, 40-49 years; n=82, 50-75 years) participated in 28 focus groups. Participants were Latina (n=44); Black (n=51); and non-Latina White (n=39). Approximately one-quarter (n=32) had limited health literacy and almost one-fifth (n=23) had limited numeracy. In the context of differing national screening recommendations, participants questioned the motives of the recommendation-making agencies, including the role of costs and how costs were considered when making screening recommendations. Participants expressed concern that they were not represented (e.g., race/ethnicity) in the data informing the recommendations. Immediately following the focus groups, most participants expressed intention to screen within the upcoming year (pre n=100 vs. post n=107). CONCLUSIONS: Divergent breast cancer screening recommendations may lead to mistrust and paradoxically reinforce high overall enthusiasm for screening.
Assuntos
Neoplasias da Mama , Detecção Precoce de Câncer , Feminino , Humanos , Neoplasias da Mama/diagnóstico , Neoplasias da Mama/prevenção & controle , Hispânico ou Latino , Mamografia , Programas de Rastreamento/métodos , Percepção , Dissidências e Disputas , Conhecimentos, Atitudes e Prática em Saúde , Adulto , Pessoa de Meia-Idade , Idoso , Negro ou Afro-Americano , BrancosRESUMO
BACKGROUND: Patients' information needs may differ from what their care providers may perceive to be the patients' needs. This discordance needs to be recognized and addressed. OBJECTIVE: We conducted a qualitative study to explore the perceptions of patients with selected musculoskeletal disorders and those of rheumatologists, on their preferred strategies for delivery of disease management information. METHODS: Fifty-two patients diagnosed with either rheumatoid arthritis, knee osteoarthritis, or osteoporosis took part in 6 focus groups and 18 individual semistructured interviews. In addition, 11 rheumatologists participated in 2 focus groups and 4 semistructured individual interviews. Data were explored by thematic content analysis. Perceived preferences were identified and compared between patients and rheumatologists regarding (a) media, (b) setting, (c) messengers, and (d) key message content. RESULTS: Patients' preferred media for disease management information were electronic (television and videos delivered as digital optical discs or the Internet), group instruction, and printed material. Patients preferred the information to be delivered in the setting of their homes, doctor's offices, or clinic waiting areas by the rheumatologists and patients with disease experience, addressing healthy lifestyle changes, medication adherence, and consequences of noncompliance. For rheumatologists, the perceived preference for information delivery was through printed material (brochures, booklets, and pamphlets) delivered in waiting areas by nurses and physicians, addressing nature of the disease, complications, and treatment adverse effects. CONCLUSIONS: Provider perspectives on strategies for education may differ from those of patients. Our findings highlight the need for considering different stakeholder perspectives in designing educational tools and decision support materials for patients with chronic diseases. TAKEHOME MESSAGE: Rheumatologists' preferences on strategies for education (mode of delivery, delivery setting, messengers, and topics) differ from those of patients. For example, patients want to learn about lifestyle changes and consequences of compliance versus noncompliance, whereas rheumatologists considered more important for patients to understand their disease, treatment adverse effects, and consequences of noncompliance.
Assuntos
Artrite Reumatoide , Doenças Musculoesqueléticas , Artrite Reumatoide/diagnóstico , Artrite Reumatoide/terapia , Humanos , Adesão à Medicação , Doenças Musculoesqueléticas/diagnóstico , Doenças Musculoesqueléticas/terapia , Pesquisa Qualitativa , ReumatologistasRESUMO
BACKGROUND: Uptake of cancer risk management based on inherited predispositions, which encompasses bilateral mastectomy (BLM), bilateral salpingo-oophorectomy (BSO), and intensified screening, is the primary motivation for cascade testing for hereditary breast and ovarian cancer (HBOC). However, long-term outcome data for cascade testers are lacking. METHODS: Medical records were abstracted for all unaffected women with pathogenic variants in HBOC genes from 2 cancer hospitals (2013-2019) with at least 1 year of follow-up to compare the uptake of surgery and screening between cascade and noncascade testers. RESULTS: Cascade testers (79.8%) were younger than noncascade testers (mean age, 37.6 vs 43.5 years; P = .002). Among women aged ≥40 years, 43% underwent BLM, and 71.6% underwent BSO, with no significant difference in uptake between cascade and noncascade testers. The mean time to BSO among cascade testers was shorter among women aged ≥40 years versus those aged <40 years (11.8 vs 31.9 months; P = .04); no such difference was observed among noncascade testers. Mammography and breast magnetic resonance imaging rates were low in the recorded 6 years for both groups after genetic counseling. CONCLUSIONS: Management uptake among cascade testers is high with rates comparable to those for unaffected BRCA-positive women. A large proportion of women act on cascade test results, and this represents a novel report of utilization of cancer management strategies.
Assuntos
Neoplasias da Mama , Neoplasias Ovarianas , Adulto , Neoplasias da Mama/diagnóstico , Feminino , Testes Genéticos , Humanos , Mastectomia , Mutação , Neoplasias Ovarianas/genética , Gestão de Riscos , Salpingo-OoforectomiaRESUMO
BACKGROUND: Women of lower socioeconomic status (SES) with early-stage breast cancer are more likely to report poorer physician-patient communication, lower satisfaction with surgery, lower involvement in decision making, and higher decision regret compared to women of higher SES. The objective of this study was to understand how to support women across socioeconomic strata in making breast cancer surgery choices. METHODS: We conducted a 3-arm (Option Grid, Picture Option Grid, and usual care), multisite, randomized controlled superiority trial with surgeon-level randomization. The Option Grid (text only) and Picture Option Grid (pictures plus text) conversation aids were evidence-based summaries of available breast cancer surgery options on paper. Decision quality (primary outcome), treatment choice, treatment intention, shared decision making (SDM), anxiety, quality of life, decision regret, and coordination of care were measured from T0 (pre-consultation) to T5 (1-year after surgery. RESULTS: Sixteen surgeons saw 571 of 622 consented patients. Patients in the Picture Option Grid arm (n = 248) had higher knowledge (immediately after the visit [T2] and 1 week after surgery or within 2 weeks of the first postoperative visit [T3]), an improved decision process (T2 and T3), lower decision regret (T3), and more SDM (observed and self-reported) compared to usual care (n = 257). Patients in the Option Grid arm (n = 66) had higher decision process scores (T2 and T3), better coordination of care (12 weeks after surgery or within 2 weeks of the second postoperative visit [T4]), and more observed SDM (during the surgical visit [T1]) compared to usual care arm. Subgroup analyses suggested that the Picture Option Grid had more impact among women of lower SES and health literacy. Neither intervention affected concordance, treatment choice, or anxiety. CONCLUSIONS: Paper-based conversation aids improved key outcomes over usual care. The Picture Option Grid had more impact among disadvantaged patients. LAY SUMMARY: The objective of this study was to understand how to help women with lower incomes or less formal education to make breast cancer surgery choices. Compared with usual care, a conversation aid with pictures and text led to higher knowledge. It improved the decision process and shared decision making (SDM) and lowered decision regret. A text-only conversation aid led to an improved decision process, more coordinated care, and higher SDM compared to usual care. The conversation aid with pictures was more helpful for women with lower income or less formal education. Conversation aids with pictures and text helped women make better breast cancer surgery choices.
Assuntos
Neoplasias da Mama/cirurgia , Tomada de Decisão Compartilhada , Adulto , Idoso , Comunicação , Técnicas de Apoio para a Decisão , Feminino , Humanos , Pessoa de Meia-Idade , Participação do Paciente , Classe SocialRESUMO
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
Lung cancer screening with low-dose computed tomography is recommended for high-risk smokers who meet specific eligibility criteria. Current guidelines suggest that eligible adults with a heavy smoking history will benefit from annual low dose computed tomography but due to several associated risks (e.g., false-positives, radiation exposure, overdiagnosis) a shared decision-making consultation is required by the Centers for Medicare & Medicaid Services, and endorsed by the United States Preventive Services Task Force. In order to examine potential for tracking LCS uptake, adherence, and patient-provider communication at a national level, we reviewed four regularly publicly available national surveys (National Health Interview Survey [NHIS], Behavioral Risk Factor Surveillance System [BRFSS], National Health and Nutrition Examination Survey [NHANES], and Health Information National Trends Survey [HINTS]) to assess available data; an overview of 37 publications using these sources is also provided. The results show that none of the surveys include items that fully assess current LCS guidelines. Implications for future research-including the potential to examine factors associated with LCS uptake and patient-provider communication-are addressed.
Assuntos
Detecção Precoce de Câncer , Neoplasias Pulmonares , Adulto , Idoso , Humanos , Neoplasias Pulmonares/diagnóstico , Medicare , Inquéritos Nutricionais , Tomografia Computadorizada por Raios X , Estados UnidosRESUMO
OBJECTIVE: The degree decision aids (DAs) can promote active surveillance (AS) for prostate cancer (PCa) remains poorly understood. Herein, we surveyed radiation oncologists (RO) and urologists (URO) about their attitudes towards DAs in counselling patients about AS for low-risk PCa. METHODS: We conducted a national survey of RO (n = 915) and URO (n = 940) to assess their attitudes about DAs for AS for patients with low-risk PCa. Respondents were queried about their attitudes towards DAs and proportion of PCa patients managed with AS. Multivariable logistic regression models were used to examine physician characteristics related to attitudes about DAs. RESULTS: The overall response rate was 37.3% (n = 691). Most respondents strongly agreed or agreed that DAs helped patients with low-risk PCa make informed decisions (93.9%) and also increased patient support for AS (86.6%). Having a high volume of their low-risk PCa patients on AS (>15%) was associated with endorsing the statement that use of DAs increased the likelihood of recommending AS (OR: 1.83; 95% CI: 1.00-4.61; p = .05) and being a URO versus a RO (OR: 3.37; 95% CI: 2.46-5.79; p < .001). CONCLUSIONS: Most specialists view DAs as effective tools to facilitate more informed treatment decisions and facilitate greater use of AS in appropriately selected patients.
Assuntos
Neoplasias da Próstata , Urologistas , Atitude do Pessoal de Saúde , Tomada de Decisões , Técnicas de Apoio para a Decisão , Humanos , Masculino , Padrões de Prática Médica , Neoplasias da Próstata/terapia , Radio-Oncologistas , Conduta ExpectanteRESUMO
BACKGROUND: Researchers developing personal health tools employ a range of approaches to involve prospective users in design and development. OBJECTIVE: The aim of this paper was to develop a validated measure of the human- or user-centeredness of design and development processes for personal health tools. METHODS: We conducted a psychometric analysis of data from a previous systematic review of the design and development processes of 348 personal health tools. Using a conceptual framework of user-centered design, our team of patients, caregivers, health professionals, tool developers, and researchers analyzed how specific practices in tool design and development might be combined and used as a measure. We prioritized variables according to their importance within the conceptual framework and validated the resultant measure using principal component analysis with Varimax rotation, classical item analysis, and confirmatory factor analysis. RESULTS: We retained 11 items in a 3-factor structure explaining 68% of the variance in the data. The Cronbach alpha was .72. Confirmatory factor analysis supported our hypothesis of a latent construct of user-centeredness. Items were whether or not: (1) patient, family, caregiver, or surrogate users were involved in the steps that help tool developers understand users or (2) develop a prototype, (3) asked their opinions, (4) observed using the tool or (5) involved in steps intended to evaluate the tool, (6) the process had 3 or more iterative cycles, (7) changes between cycles were explicitly reported, (8) health professionals were asked their opinion and (9) consulted before the first prototype was developed or (10) between initial and final prototypes, and (11) a panel of other experts was involved. CONCLUSIONS: The User-Centered Design 11-item measure (UCD-11) may be used to quantitatively document the user/human-centeredness of design and development processes of patient-centered tools. By building an evidence base about such processes, we can help ensure that tools are adapted to people who will use them, rather than requiring people to adapt to tools.
Assuntos
Cuidadores , Análise Fatorial , Humanos , Estudos Prospectivos , PsicometriaRESUMO
BACKGROUND: A central goal among researchers and policy makers seeking to implement clinical interventions is to identify key facilitators and barriers that contribute to implementation success. Despite calls from a number of scholars, empirical insights into the complex structural and cultural predictors of why decision aids (DAs) become routinely embedded in health care settings remains limited and highly variable across implementation contexts. METHODS: We examined associations between "reach", a widely used indicator (from the RE-AIM model) of implementation success, and multi-level site characteristics of nine LVAD clinics engaged over 18 months in implementation and dissemination of a decision aid for left ventricular assist device (LVAD) treatment. Based on data collected from nurse coordinators, we explored factors at the level of the organization (e.g. patient volume), patient population (e.g. health literacy; average sickness level), clinician characteristics (e.g. attitudes towards decision aid; readiness for change) and process (how the aid was administered). We generated descriptive statistics for each site and calculated zero-order correlations (Pearson's r) between all multi-level site variables including cumulative reach at 12 months and 18 months for all sites. We used principal components analysis (PCA) to examine any latent factors governing relationships between and among all site characteristics, including reach. RESULTS: We observed strongest inclines in reach of our decision aid across the first year, with uptake fluctuating over the second year. Average reach across sites was 63% (s.d. = 19.56) at 12 months and 66% (s.d. = 19.39) at 18 months. Our PCA revealed that site characteristics positively associated with reach on two distinct dimensions, including a first dimension reflecting greater organizational infrastructure and standardization (characteristic of larger, more established clinics) and a second dimension reflecting positive attitudinal orientations, specifically, openness and capacity to give and receive decision support among coordinators and patients. CONCLUSIONS: Successful implementation plans should incorporate specific efforts to promote supportive and mutually informative interactions between clinical staff members and to institute systematic and standardized protocols to enhance the availability, convenience and salience of intervention tool in routine practice. Further research is needed to understand whether "core predictors" of success vary across different intervention types.
Assuntos
Letramento em Saúde , Coração Auxiliar , Humanos , MotivaçãoRESUMO
BACKGROUND: Several factors can affect the risk of recurrence after curative resection of colorectal cancer (CRC). We aimed to develop a risk model for recurrence after definitive treatment of Stage I-III CRC using data from a nationally representative database and to develop an individualized web-based risk calculator. METHODS: A random sample of patients who underwent resection for Stage I-III CRC between 2006 and 2007 at Commission on Cancer (CoC) accredited centers were included. Primary data regarding first recurrence was abstracted from medical records and merged with the National Cancer Database. Multivariable cox regression analysis was used to test for factors associated with cancer recurrence, stratified by stage. Model performance was tested by c statistic and calibration plots. Hazard Ratios were utilized to develop an individualized web-based recurrence prediction tool. RESULTS: A total of 8249 patients from 1175 CoC centers were included. Of these, 1656 (20.1%) patients had a recurrence during 5 years of follow-up. Median time to recurrence was 16 months. The final predictive models displayed excellent discrimination and calibration with concordance indexes of 0.7. The online calculator included 12 variables, including tumor site, stage, time since surgery, and surveillance intensity. Output is displayed numerically and graphically with an icon array. CONCLUSIONS: Using primarily abstracted recurrence data from a random sample of patients treated for CRC at CoC accredited centers across the United States, we successfully created an individualized CRC recurrence risk assessment tool. This web-based calculator can be used by physicians and patients in shared decision making to guide management discussions. TRIAL REGISTRATION: ClinicalTrials.gov Registration Number: NCT02217865.
Assuntos
Neoplasias Colorretais , Procedimentos Cirúrgicos do Sistema Digestório , Recidiva Local de Neoplasia , Neoplasias Colorretais/epidemiologia , Neoplasias Colorretais/patologia , Neoplasias Colorretais/cirurgia , Humanos , Recidiva Local de Neoplasia/epidemiologia , Estadiamento de Neoplasias , Modelos de Riscos Proporcionais , Estados Unidos/epidemiologiaAssuntos
Tomada de Decisão Clínica/métodos , Neoplasias Colorretais/diagnóstico , Detecção Precoce de Câncer/normas , Programas de Rastreamento/normas , Participação do Paciente/métodos , Guias de Prática Clínica como Assunto , American Cancer Society , Detecção Precoce de Câncer/métodos , Humanos , Programas de Rastreamento/métodosRESUMO
Uncertain genetic information such as variants of uncertain significance (VUS) is often encountered by patients in clinical cancer genetic testing. Although healthcare providers facilitate patient's understanding of VUS-associated empirical risk and its medical implications, patients' understanding and perceptions of risk often differ and may be based on subjective evaluations such as their perception of provider's epistemic authority (EA). This study examines the hypothesis that individuals attribute greater EA to genetic counselors (GCs) (compared to gastrointestinal oncologists) and to providers who recommend more active VUS-related recommendations (compared to inactive). In a factorial experiment, 652 adult participants recruited on Amazon Mechanical Turk were block-randomized to read one of 10 different types of VUS-related scenarios in the context of colon cancer (5 recommendation types × 2 provider types). GCs were attributed higher EA than gastrointestinal oncologists (p = <.001). Active recommendations (comprehensive, check back, wrong) were attributed lower EA (M = 3.67, SD = 0.79) compared to the inactive (stand by, disregard) (M = 3.89, SD = 0.67) (p-value = <.001). The wrong recommendation was attributed lowest EA compared to the four correct recommendations (mean difference = -0.34, -0.45, -0.35, and -0.44, respectively; p = .002), which, when dropped from the analysis, showed no difference between the correct active and inactive recommendations (3.78 vs. 3.89, p = .095). The higher EA attributed to GCs is encouraging and possibly explained by increased public awareness of the genetic counseling profession. The lack of difference in EA attributed to various correct, yet incomplete forms of VUS-related recommendation indicates that individuals may be unaware of and thus completely rely on providers for complex medical topics like VUS. Communicating VUS-related uncertainty warrants caution and further research to elucidate best practices and outcomes.
RESUMO
BACKGROUND: Patients with cancer experience financial toxicity from the costs of treatment, as well as material and psychologic stress related to this burden. A synthesized understanding of predictors and outcomes of the financial burdens associated with cancer care is needed to underpin strategic responses in oncology care. This study systematically reviewed risk factors and outcomes associated with financial burdens related to cancer treatment. METHODS: MEDLINE, Embase, PubMed, PsychINFO, and the Cochrane Library were searched from study inception through June 2018, and reference lists were scanned from studies of patient-level predictors and outcomes of financial burdens in US patients with cancer (aged ≥18 years). Two reviewers conducted screening, abstraction, and quality assessment. Variables associated with financial burdens were synthesized. When possible, pooled estimates of associations were calculated using random-effects models. RESULTS: A total of 74 observational studies of financial burdens in 598,751 patients with cancer were identified, among which 49% of patients reported material or psychologic financial burdens (95% CI, 41%-56%). Socioeconomic predictors of worse financial burdens with treatment were lack of health insurance, lower income, unemployment, and younger age at cancer diagnosis. Compared with patients with health insurance, those who were uninsured demonstrated twice the odds of financial burdens (pooled odds ratio [OR], 2.09; 95% CI, 1.33-3.30). Financial burdens were most severe early in cancer treatment, did not differ by disease site, and were associated with worse health-related quality of life (HRQoL) and nearly twice the odds of cancer medication nonadherence (pooled OR, 1.70; 95% CI, 1.13-2.56). Only a single study demonstrated an association with increased mortality. Studies assessing the comparative effectiveness of interventions to mitigate financial burdens in patients with cancer were lacking. CONCLUSIONS: Evidence showed that financial burdens are common, disproportionately impacting younger and socioeconomically disadvantaged patients with cancer, across disease sites, and are associated with worse treatment adherence and HRQoL. Available evidence helped identify vulnerable patients needing oncology provider engagement and response, but evidence is critically needed on the effectiveness of interventions designed to mitigate financial burden and impact.