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BACKGROUND: Community initiatives can shape health behaviors, such as physical activity and dietary habits, across a population and help reduce the risk of developing chronic disease. To achieve this goal and impact health outcomes, Pasadena Vibrant Community aimed to engage communities in an ongoing dialogue about the importance of healthy behaviors, implement and advance community-based strategies to promote health, and improve diet and physical activity behaviors. The initiative was centered around a collaboration between a backbone organization, steering committee, and 7 collaborating organizations funded to implement multicomponent, evidence-based programs.. The common agenda was detailed in a community action plan, which included 19 interventions targeting healthy eating and active living among adults and youth in Pasadena, Texas. METHODS: A mixed methods evaluation of the initiative was conducted over 4 years. Data sources included document reviews of quarterly progress reports (n = 86) and supplemental data reports (n = 16) provided by collaborating organizations, annual Steering Committee surveys (n = 4), and interviews conducted with staff from a subset of Collaborating Organizations (n = 4). RESULTS: The initiative reached over 50,000 community members per year through 19 evidence-based interventions and impacted health outcomes, including knowledge and adoption of healthy eating practices and increased physical activity. Thirty-one systems-level changes were implemented during the initiative, including 16 environmental changes. Steering Committee meetings and shared goals enabled connections, communication, and cooperation, which allowed Collaborating Organizations to address challenges and combine resources to deliver their programs. CONCLUSIONS: Community initiatives can effectively permeate the community by reaching individuals, improving physical activity and dietary habits, and ensuring sustainability. Based on the experience reported here, the success of a community initiative can be facilitated if collaborating organizations come together to implement evidence-based interventions and tailor them to the community, and if they are empowered by significant leadership and supportive collaboration and aligned by a common agenda.
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Comportamentos Relacionados com a Saúde , Promoção da Saúde , Adulto , Adolescente , Humanos , Promoção da Saúde/métodos , Dieta , Exercício Físico , Doença CrônicaRESUMO
PURPOSE: The COVID-19 pandemic created significant disruptions in cancer care, much of which was transitioned to telehealth. Because telehealth alters the way clinicians and patients interact with one another, this investigation examined patients' perceptions of their communication with clinicians during the pandemic. METHOD: Patients were recruited from the Cancer Support Community, Fight Colorectal Cancer, and a market research firm to participate in an online survey. In addition to demographic and health-related information, respondents completed measures of patient-centered communication and evaluated how their communication in telehealth sessions compared with in-person visits. RESULTS: From October to December 2020, 227 respondents (65.6% female, 64.6% Non-Hispanic White, 33.5% had 6 or more telehealth sessions, 55% were 50 or older) reported having some of their cancer care provided via telehealth. Respondents who were of racial/ethnic minorities, male, had more telehealth sessions, or had poorer mental health reported less patient-centered communication with clinicians. Most patients thought communication in telehealth sessions was "about the same" as in-person visits with respect to good communication (59%). However, patients thinking communication in telehealth sessions was "better" than in-person visits were more likely to be Hispanic (49%), Non-Hispanic Black (41%), under 50 years of age (32%), male (40%), and had more telehealth sessions (34%). CONCLUSION: Respondents reporting less patient-centered communication during the pandemic-e.g., persons of racial/ethnic minorities and males-were also more likely to evaluate communication in telehealth sessions as better than in-person visits. Further research is needed to understand reasons underlying this finding. Cancer care clinicians should take into account patient preferences regarding telehealth care, which may be particularly important for racial and ethnic minority patients.
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COVID-19 , Neoplasias , Telemedicina , Comunicação , Etnicidade , Feminino , Humanos , Masculino , Grupos Minoritários , Neoplasias/terapia , Pandemias , Encaminhamento e Consulta , Telemedicina/métodosRESUMO
Background: Assessments to determine patients' treatment needs and preferences when they begin substance use disorder (SUD) treatment are essential. The objectives of this paper are to identify the perspectives of providers who conduct assessments on (1) assessments' utility in determining the level of care where patients will receive treatment, (2) strategies to engage patients in treatment during assessments, and (3) assessment strengths and shortcomings. Methods: Semi-structured interviews were conducted with 30 California treatment providers who routinely perform SUD assessments for Medicaid beneficiaries. Interviews asked about the utility of assessment tools in determining appropriate levels of care, patient engagement during assessments, and strengths and shortcomings of intake assessment processes. Interviews were audio-recorded, transcribed, and analyzed by multiple researchers using template analysis. Results: Providers reported that assessments linked to level-of-care decision rules sometimes generate recommendations inconsistent with their clinical judgment, and that the timing of assessments can influence the quality of the information collected. Providers described engagement strategies that help patients feel more comfortable during assessments and that encourage more thoughtful and accurate responses. Providers valued assessments that helped ensure comprehensive collection of patient information, that allowed flexibility to probe for additional information and context, and that facilitated treatment planning. Providers did not like assessments that were long and repetitive or those that did not collect detailed information about patients' mental health and recovery environments. Conclusions: Assessments can be improved if providers conduct them in a manner that makes patients feel comfortable while building trust and rapport. Ensuring that assessments are not long or repetitive and giving comprehensive assessments once patients have developed trusting relationships with treatment programs can improve assessment processes. Further research is needed to optimize SUD assessments.
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Transtornos Relacionados ao Uso de Substâncias , Humanos , Medicaid , Participação do Paciente , Transtornos Relacionados ao Uso de Substâncias/diagnóstico , Transtornos Relacionados ao Uso de Substâncias/psicologia , Transtornos Relacionados ao Uso de Substâncias/terapia , Estados UnidosRESUMO
PURPOSE: Increasingly, cancer centers are delivering population-based approaches to narrow the gap between known cancer prevention strategies and their effective implementation. Leveraging successful healthy community initiatives, MD Anderson developed Be Well Communities™, a model that implements evidence-based actions to directly impact people's lives. METHODS: In partnership with local organizations, MD Anderson's Be Well Communities team executed and evaluated 16 evidence-based interventions to address community priorities in healthy diets, physical activity, and sun safety. Evaluation included assessing the effectiveness of evidence-based interventions, stakeholders' perceptions of collaboration, and the population-level impact on dietary and physical activity behaviors among students using the School Physical Activity and Nutrition Survey and the System for Observing Fitness Instruction Time. Two-tailed t-tests were used to compare tested parameters at baseline and follow-up. p values less than .05 were considered significant. RESULTS: This model achieved its early outcomes, including effectively implementing evidence-based interventions, building strong partnerships, increasing access to healthy foods, improving the built environment, and increasing healthy food and water consumption and moderate to vigorous physical activity among students (p < .001). CONCLUSIONS: Be Well Communities is an effective model for positively impacting community health which could be leveraged by others to deliver evidence-based actions to improve population health.
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Promoção da Saúde/métodos , Neoplasias/prevenção & controle , Saúde Pública , Atenção à Saúde/métodos , Dieta , Exercício Físico , Humanos , Instituições Acadêmicas , EstudantesRESUMO
Engaging individuals with cancer in decision making about their treatments has received increased attention; shared decision making (SDM) has become a hallmark of patient-centered care. Although physicians indicate substantial interest in SDM, implementing SDM in cancer care is often complex; high levels of uncertainty may exist, and health care providers must help patients understand the potential risks versus benefits of different treatment options. However, patients who are more engaged in their health care decision making are more likely to experience confidence in and satisfaction with treatment decisions and increased trust in their providers. To implement SDM in oncology practice, physicians and other health care providers need to understand the components of SDM and the approaches to supporting and facilitating this process as part of cancer care. This review summarizes recent information regarding patient and physician factors that influence SDM for cancer care, outcomes resulting from successful SDM, and strategies for implementing SDM in oncology practice. We present a conceptual model illustrating the components of SDM in cancer care and provide recommendations for facilitating SDM in oncology practice.
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Tomada de Decisões , Oncologia , Neoplasias/terapia , Cuidadores , Humanos , Participação do PacienteRESUMO
OBJECTIVES: To understand the information needs and experiences with health care and social support among women with confirmed or possible Zika virus infection during pregnancy. METHODS: We conducted in-depth interviews with 18 women whose pregnancies were part of surveillance efforts in two states, Pennsylvania and Virginia. Using a semi-structured guide available in English and Spanish, we asked women about their experiences. We conducted a thematic analysis using NVivo 11. RESULTS: Only one participant reported that her infant had been diagnosed with health problems related to congenital Zika virus infection. Most participants said they received the information they needed about Zika virus and their infant's medical care. Most participants primarily spoke Spanish and described satisfactory experiences communicating with providers, either using a mix of Spanish and English or using an interpreter. Coordination of care and clear communication among different providers was a key factor in participants' satisfaction with health care received. Participants noted high levels of stress around the uncertainty associated with Zika virus exposure during pregnancy. CONCLUSIONS FOR PRACTICE: Although participants reported satisfaction with care, they also reported high levels of anxiety and challenges coping with the uncertainties along their journeys. Study findings support the need for guidance for providers about how to talk with women about Zika virus infection during pregnancy and specifically how to discuss the uncertainties about diagnosis and outcomes.
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Complicações Infecciosas na Gravidez , Infecção por Zika virus , Zika virus , Atenção à Saúde , Feminino , Humanos , Lactente , Percepção , Gravidez , Complicações Infecciosas na Gravidez/diagnóstico , Apoio Social , Estados Unidos , Infecção por Zika virus/diagnósticoRESUMO
Background: In general, research has found that patient-centered substance use disorder treatment is positively correlated with improved patient outcomes. However, little research has examined what factors make intake assessments-the first step in addiction treatment-patient-centered. Methods: We conducted interviews with 30 Medicaid-enrolled individuals who received addiction treatment in California about their experiences with the intake assessment process. Results: Participants reported that the intake assessment process evoked strong feelings, both positive and negative. Some participants said that answering detailed questions about their substance use, mental health, and social relationships, for example, was cathartic and gave them helpful insights. Other participants found the questions invasive, exhausting, and anxiety provoking. Participants also emphasized how critical it is for the person conducting the assessment to be supportive, nonjudgmental, and attentive. Participants recommended delaying the comprehensive assessment because they did not feel physically or emotionally ready to complete the intake. Conclusions and recommendations: Patients' introduction to addiction treatment is typically the intake assessment. By understanding how patients experience intake assessments, providers can make the process more patient-centered, which may lead to improved patient outcomes.
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Comportamento Aditivo , Transtornos Relacionados ao Uso de Substâncias , Transtornos de Ansiedade , Humanos , Medicaid , Transtornos Relacionados ao Uso de Substâncias/psicologia , Transtornos Relacionados ao Uso de Substâncias/terapia , Estados UnidosRESUMO
Access to reliable, up-to-date information and resources can assist individuals managing and living with cancer. The Leukemia & Lymphoma Society, through its Information Resource Center, provides personalized information and support to individuals affected by blood cancer. To examine its value and impact, we conducted qualitative interviews (n = 18) and an online survey of patients and caregivers (N = 515) after they talked with an Information Resource Center Information Specialist by phone, with a follow-up survey about 6 months later. Respondents most commonly contacted the Information Resource Center to get referrals to support programs (40.4%) and to obtain information about getting a second opinion (36.5%) and financial assistance (36.2%). After talking with an Information Specialist, respondents felt more hopeful (85.9%), more confident in managing care (82.9%), and more knowledgeable about their diagnosis (49.5%) and financial resources (42.4%). After speaking with an Information Specialist, respondents changed how they advocated for themselves/loved one (23.8%), changed how they communicated with doctors/other providers and family/friends (both 15.9%), received financial assistance (22.2%), and took other actions. Among respondents who took actions, most said that the conversation(s) had positively impacted the action. Respondents who spoke with an Information Specialist more than once were more likely to report positive impacts, including changing how they advocate for themselves/loved one and communicate with providers (both p < 0.05). Respondents diagnosed more recently were also more likely to report positive impact, including changing the way they communicate with providers (p < 0.05). Findings highlight the value of cancer helplines and suggest ways they can be most effective.
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Cuidadores , Neoplasias , Amigos , Humanos , Estudos Longitudinais , Neoplasias/terapia , Assistência Centrada no PacienteRESUMO
Importance: Neural tube defects are among the most common congenital anomalies in the United States. Periconceptional folic acid supplementation is a primary care-relevant preventive intervention. Objective: To review the evidence on folic acid supplementation for preventing neural tube defects to inform the US Preventive Services Task Force for an updated Recommendation Statement. Data Sources: MEDLINE, Cochrane Library, EMBASE, and trial registries through January 28, 2016, with ongoing surveillance through November 11, 2016; references; experts. Study Selection: English-language studies of folic acid supplementation in women. Excluded were poor-quality studies; studies of prepubertal girls, men, women without the potential for childbearing, and neural tube defect recurrence; and studies conducted in developing countries. Data Extraction and Synthesis: Two investigators independently reviewed abstracts, full-text articles, and risk of bias of included studies. One investigator extracted data and a second checked accuracy. Because of heterogeneity, data were not pooled. Main Outcomes and Measures: Neural tube defects, harms of treatment (twinning, respiratory outcomes). Results: A total of 24 studies (N > 58â¯860) were included. In 1 randomized clinical trial from Hungary initiated in 1984, incidence of neural tube defects for folic acid supplementation compared with trace element supplementation was 0% vs 0.25% (Peto odds ratio [OR], 0.13 [95% CI, 0.03-0.65]; n = 4862). Odds ratios from cohort studies recruiting participants between 1984 and 1996 demonstrated beneficial associations and ranged from 0.11 to 0.27 (n = 19â¯982). Three of 4 case-control studies with data from 1976 through 1998 reported ORs ranging from 0.6 to 0.7 (n > 7121). Evidence of benefit led to food fortification in the United States beginning in 1998, after which no new prospective studies have been conducted. More recent case-control studies drawing from data collected after 1998 have not demonstrated a protective association consistently with folic acid supplementation, with ORs ranging from 0.93 to 1.4 and confidence intervals spanning the null (n > 13â¯990). Regarding harms, 1 trial (OR, 1.40 [95% CI, 0.89-2.21]; n = 4767) and 1 cohort study (OR, 1.04 [95% CI, 0.91-1.18]; n = 2620) found no statistically significant increased risk of twinning. Three systematic reviews found no consistent evidence of increased risk of asthma (OR, 1.06 [95% CI, 0.99-1.14]; n = 14â¯438), wheezing, or allergy. Conclusions and Relevance: In studies conducted before the initiation of food fortification in the United States in 1998, folic acid supplementation provided protection against neural tube defects. Newer postfortification studies have not demonstrated a protective association but have the potential for misclassification and recall bias, which can attenuate the measured association of folic acid supplementation with neural tube defects.
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Suplementos Nutricionais , Ácido Fólico/administração & dosagem , Defeitos do Tubo Neural/prevenção & controle , Complexo Vitamínico B/administração & dosagem , Adolescente , Adulto , Comitês Consultivos , Suplementos Nutricionais/efeitos adversos , Feminino , Ácido Fólico/efeitos adversos , Humanos , Gravidez , Prevenção Primária/métodos , Estados Unidos , Complexo Vitamínico B/efeitos adversos , Adulto JovemRESUMO
Patient-reported outcomes (PROs) measure quality of life, symptoms, patient functioning, and patient perceptions of care; they are essential for gaining a full understanding of cancer care and the impact of cancer on people's lives. Repeatedly captured facility-level and/or population-level PROs (PRO surveillance) could play an important role in quality monitoring and improvement, benchmarking, advocacy, policy making, and research. This article describes the rationale for PRO surveillance and the methods of the Patient Reported Outcomes Symptoms and Side Effects Study (PROSSES), which is the first PRO study to use the American College of Surgeons Commission on Cancer's Rapid Quality Reporting System to identify patients and manage study data flow. The American Cancer Society, the National Cancer Institute, the Commission on Cancer, and RTI International collaborated on PROSSES. PROSSES was conducted at 17 cancer programs that participated in the National Cancer Institute Community Cancer Centers Program among patients diagnosed with locoregional breast or colon cancer. The methods piloted in PROSSES were successful as demonstrated by high eligibility (93%) and response (61%) rates. Differences in clinical and demographic characteristics between respondents and nonrespondents were mostly negligible, with the exception that non-white individuals were somewhat less likely to respond. These methods were consistent across cancer centers and reproducible over time. If repeated and expanded, they could provide PRO surveillance data from patients with cancer on a national scale.
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Neoplasias da Mama , Neoplasias do Colo , Avaliação de Resultados da Assistência ao Paciente , Satisfação do Paciente , Vigilância da População/métodos , Qualidade da Assistência à Saúde , Qualidade de Vida , Autorrelato , Adulto , Idoso , Neoplasias da Mama/complicações , Neoplasias da Mama/psicologia , Neoplasias da Mama/terapia , Neoplasias do Colo/complicações , Neoplasias do Colo/psicologia , Neoplasias do Colo/terapia , Fadiga/etiologia , Feminino , Humanos , Cooperação Internacional , Masculino , Pessoa de Meia-Idade , National Cancer Institute (U.S.) , Dor/etiologia , Seleção de Pacientes , Reprodutibilidade dos Testes , Estudos de Amostragem , Estresse Psicológico/etiologia , Resultado do Tratamento , Estados UnidosRESUMO
PURPOSE: Patient experiences with symptom care need to be assessed and documented to ensure successful management of cancer-related symptoms. This paper details one method for creating symptom management quality improvement (SMQI) reports, including case-mix adjustment of patient-reported measures. Qualitative data regarding the acceptability of these reports at participating cancer centers (CCs) are also provided. METHODS: Data were collected from 2226 patients treated at 16 CCs via mailed/Web questionnaires. Twelve items assessing patient perceptions of symptom management-pain, fatigue, emotional distress-served as key quality indicators. Medico-demographic variables suitable for case-mix adjustment were selected using an index score combining predictive power and heterogeneity across CCs. SMQI reports were designed with staff feedback and produced for each CC, providing crude and adjusted CC-specific rates, along with study-wide rates for comparison purposes. RESULTS: Cancer type and participant educational level were selected for case-mix adjustment based upon high index scores. The Kendall rank correlation coefficient showed that case-mix adjustments changed the ranking of CCs on the key quality indicators (% Δ rank range: 5-22 %). The key quality indicators varied across CCs (all p < 0.02). SMQI reports were well received by CC staff, who described plans to share them with key personnel (e.g., cancer committee, navigator). CONCLUSIONS: This paper provides one method for creating hospital-level SMQI reports, including case-mix adjustment. Variation between CCs on key quality indicators, even after adjustment, suggested room for improvement. SMQI reports based on patient-reported data can inform and motivate efforts to improve care through professional/patient education and applying standards of care.
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Medidas de Resultados Relatados pelo Paciente , Melhoria de Qualidade , Perfil de Impacto da Doença , Idoso , Humanos , Pessoa de Meia-Idade , Indicadores de Qualidade em Assistência à Saúde , Inquéritos e QuestionáriosRESUMO
Colorectal cancer (CRC) is the third leading cause of cancer-related deaths in the United States. Despite the availability of multiple screening options, CRC screening is underutilized. We conducted a survey of patients (n = 2973) who were prescribed the multi-target stool DNA (mt-sDNA) screening test (commercialized as Cologuard® and manufactured by Exact Sciences Corporation) to understand attitudes and experiences that influence test completion and likelihood of future test completion. Using exploratory factor analyses, we developed three scales: Perceived Effectiveness, Perceived Ease of Use, and Perceived Comfort.
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OBJECTIVE: Addiction treatment via telehealth expanded to unprecedented levels during the COVID-19 pandemic. This study aimed to clarify whether the research evidence on the efficacy of telehealth-delivered substance use disorder treatment and the experience of providers using telehealth during the pandemic support continued use of telehealth after the pandemic and, if so, under what circumstances. METHODS: Data sources included a literature review on the efficacy of telehealth for substance use disorder treatment, responses to a 2020 online survey from 100 California addiction treatment providers, and interviews with 30 California treatment providers and other stakeholders. RESULTS: Eight published studies were identified that compared addiction treatment via telehealth with in-person treatment. Seven found telehealth treatment as effective but not more effective than in-person treatment in terms of retention, therapeutic alliance, and substance use. One Canadian study found that telehealth facilitated methadone prescribing and improved retention. In the survey results reported here, California addiction treatment providers said that more than 50% of their patients were being treated via telehealth for intensive outpatient treatment, individual counseling, group counseling, and intake assessment. They were most confident that individual counseling via telehealth was as effective as in-person individual counseling and less sure about the relative effectiveness of telehealth-delivered medication management, group counseling, and intake assessments. CONCLUSIONS: Telehealth may help engage patients in addiction treatment by improving access and convenience. Additional research is needed to confirm that benefit and to determine how best to tailor telehealth to each patient's circumstances and with what mix of in-person and telehealth services.
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COVID-19 , Telemedicina , Assistência Ambulatorial , Canadá , Humanos , Pandemias , Telemedicina/métodosRESUMO
OBJECTIVE: Patients undergoing cancer treatment during the COVID-19 pandemic have experienced stress and uncertainty with respect to disruptions in cancer care and COVID-19 related risks. We examined whether clinicians' responsiveness to patients' uncertainty and difficult emotions were associated with better health and well-being. METHODS: Patients were recruited from cancer support communities and a market research firm. Respondents assessed clinicians communication that addressed uncertainty and difficult emotions. Health status measures included mental and physical health, coping during the pandemic, and psychological distress. RESULTS: 317 respondents participated in the study. Patients' perceptions of their clinicians responsiveness to patient uncertainty and negative emotions were associated with better mental health, physical health, coping, and less psychological distress (all p-values <0.001). Respondents with greater self-efficacy and social support also reported better health. CONCLUSION: Even when controlling for patients' personal and health-related characteristics, clinicians' communication addressing patients' uncertainty and difficult emotions predicted better health, better coping, and less psychological distress. Access to social support and self-efficacy also were associated with better health status. PRACTICE IMPLICATIONS: Clinicians' communication focused on helping with uncertainty and difficult emotions is important to cancer patients, especially during the pandemic. Clinicians should also direct patients to resources for social support and patient empowerment.
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COVID-19 , Neoplasias , Médicos , COVID-19/epidemiologia , Emoções , Humanos , Neoplasias/psicologia , Neoplasias/terapia , Pandemias , Médicos/psicologia , IncertezaRESUMO
Introduction: India accounts for one-fifth of the global burden of cervical cancer cases and mortality. A safe and effective vaccine to prevent human papillomavirus (HPV) infections, the primary cause of cervical malignancies, is available in India but multiple barriers lead to its low uptake in the country. Physicians are a key stakeholder and communicator in the Indian health system and have the potential to increase HPV vaccine uptake. Objective: We undertook formative research to understand awareness, perceptions and choices of physicians when recommending the HPV vaccine to parents of adolescent girls. Methods: We conducted in-depth interviews with 32 physicians in two districts of West Bengal. Data collection was carried out between July and August 2019. The data was transcribed, coded, and analyzed using NVivo software using the thematic analysis technique. Results: Our findings suggest that while physicians are generally aware about the burden of cervical cancer and its prevention by HPV vaccination, they face several barriers to recommending the HPV vaccine routinely and strongly. These include the lack of national-level guidance on the age eligibility and dosage, lack of practice-level opportunities such as well or non-sick visits and other routine adolescent vaccines, practice-level barriers like out-of-pocket cost and vaccine availability, and perceived parental hesitancy arising from reluctance to discuss cervical cancer, its prevention, and HPV vaccination. Conclusions: Physicians in our study exhibited hesitancy when recommending the HPV vaccine. They also faced logistical barriers. It is important that the barriers pertaining to when and how physicians recommend the vaccine be tackled through further education, policy change, and development and implementation of interventions that are evidenced-based.
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The COVID-19 pandemic heightened the psychosocial impact of a cancer diagnosis as patients face concerns about the risk of infection and serious disease and uncertainties about the impact on their treatment. We conducted an online survey (n = 317) and focus groups (n = 19) with patients to examine their experiences with cancer care during the pandemic. Most survey respondents (68%) reported one or more disruptions or delays in care, including appointments switched to telehealth (49%). Patients perceived both benefits (e.g., convenience) and drawbacks (e.g., more impersonal) to telehealth. For many patients, COVID-19-related restrictions on bringing family members to support them during appointments was a major concern and left them feeling alone and vulnerable during treatment. Patients' self-reported coping during the pandemic was positively associated with age, education, and income (P < .05 for each) and better communication with their doctors during telehealth sessions (P < .001). Study findings highlight the importance of patient-centered care and communication to help patients cope with the challenges of the pandemic. Further research is needed to develop guidelines for use of telehealth as part of patient-centered cancer care.
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Background: Recent innovations have the potential to disrupt the current paradigm for kidney failure treatment. The US Food and Drug Administration is committed to incorporating valid scientific evidence about how patients weigh the benefits and risks of new devices into their decision making, but to date, premarket submission of patient preference information (PPI) has been limited for kidney devices. With input from stakeholders, we developed a survey intended to yield valid PPI, capturing how patients trade off the potential benefits and risks of wearable dialysis devices and in-center hemodialysis. Methods: We conducted concept elicitation interviews with individuals receiving dialysis to inform instrument content. After instrument drafting, we conducted two rounds of pretest interviews to evaluate survey face validity, comprehensibility, and perceived relevance. We pilot tested the survey with in-center hemodialysis patients to assess comprehensibility and usability further. Throughout, we used participant input to guide survey refinements. Results: Thirty-six individuals receiving in-center or home dialysis participated in concept elicitation (N=20) and pretest (N=16) interviews. Participants identified reduced fatigue, lower treatment burden, and enhanced freedom as important benefits of a wearable device, and many expressed concerns about risks related to device disconnection-specifically bleeding and infection. We drafted a survey that included descriptions of the risks of serious bleeding and serious infection and an assessment of respondent willingness to wait for a safer device. Input from pretest interviewees led to various instrument modifications, including treatment descriptions, item wording, and risk-level explanations. Pilot testing of the updated survey among 24 in-center hemodialysis patients demonstrated acceptable survey comprehensibility and usability, although 50% of patients required some assistance. Conclusions: The final survey is a 54-item web-based instrument that will yield estimates of the maximal acceptable risk for the described wearable device and willingness to wait for wearable devices with lower risk.
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Falência Renal Crônica , Dispositivos Eletrônicos Vestíveis , Humanos , Falência Renal Crônica/terapia , Preferência do Paciente , Diálise Renal , Terapia de Substituição Renal , Inquéritos e QuestionáriosRESUMO
OBJECTIVES: The substance use disorder (SUD) treatment field has conducted significant research on creating intake tools and processes that best match patients to the most appropriate treatment setting, but less research has been conducted on how those tools impact the patient experience. The study took advantage of a natural experiment in California to evaluate whether the implementation of American Society of Addiction Medicine (ASAM) assessment criteria and a computer-facilitated intake assessment based on the ASAM criteria affects patient experiences and patient-centeredness during intake relative to patients receiving intake assessments not based on ASAM criteria. METHODS: We analyzed surveys completed by 851 patients covered by Medi-Cal who were receiving specialty SUD treatment at 33 providers across 10 California counties about their experiences and perceptions of the intake assessment process. To account for differences in patient mix, we used inverse-probability weighting and computed differences in the weighted means for patients across non-ASAM, ASAM, and computerized-ASAM patients. RESULTS: We have found that patients who underwent intake based on ASAM assessment criteria or computerized ASAM assessment experienced a more patient-centered intake. We also found that patients who received ASAM-based assessments were more satisfied with their choice of treatment setting. CONCLUSIONS: This evidence is encouraging for the SUD treatment field, especially considering that many Medicaid programs are adopting ASAM or similar patient placement criteria and multidimensional assessments. Future research should consider whether increases in the patient-centeredness of assessments are associated with increased retention in SUD treatment and other positive treatment outcomes.
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Comportamento Aditivo , Transtornos Relacionados ao Uso de Substâncias , Assistência Ambulatorial , Humanos , Assistência Centrada no Paciente , Transtornos Relacionados ao Uso de Substâncias/terapia , Resultado do TratamentoRESUMO
BACKGROUND: As the coronavirus pandemic public health emergency begins to ebb in the United States, policymakers and providers need to evaluate how the addiction treatment system functioned during the public health emergency and draw lessons for future emergencies. One important question is whether the pandemic curtailed the use of addiction treatment and the extent to which telehealth was able to mitigate access barriers. METHODS: To begin to answer this question, we conducted a survey of specialty addiction treatment providers in California from June 2020 through July 2020. The survey focused specifically on provider organizations that served Medicaid beneficiaries. RESULTS: Of the 133 respondents, 50% reported a decrease in patients since the stay-at-home order in March 2020, with the largest decline among new patients, and 58% said more patients were relapsing. Eighty-one percent of providers said that telemedicine use had increased since the stay-at-home order. Most said that telemedicine had moderately (48%) or completely (30%) addressed access barriers. CONCLUSION: More efforts are needed to ensure that patients, and in particular new patients, receive addiction treatment during public health emergencies.
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BACKGROUND: The American Society of Addiction Medicine (ASAM) criteria were developed to provide a systematic, evidence-based, and transparent approach to addiction treatment assessment and level-of-care recommendations. In 2017, California began a Medicaid demonstration that required that providers in participating counties to adopt ASAM-based intake assessments and level-of-care criteria. We hypothesized that ASAM implementation would increase the proportion of patients retained in addiction treatment and successfully completing their treatment plan. METHODS: We implemented a comparative interrupted time series analysis with 407,792 treatment episodes by Medicaid beneficiaries in specialty addiction treatment settings from 2015 to mid-2019. We compared the change in retention rates and successful completion rates in counties that adopted ASAM-based assessments relative to counties that did not adopt ASAM-based assessments and used only clinical judgment for level-of-care decisions. Treatment retention was defined as staying in addiction treatment for at least 30 days. Successful completion of the treatment plan was determined by the patient's clinician. RESULTS: After one year, ASAM implementation was associated with a 9% increase in 30-day retention among treatment episodes that started in a residential setting, but no change in retention among episodes starting in outpatient settings. We found no statistically significant association between ASAM adoption and successful treatment completion. CONCLUSIONS: Implementation of ASAM-based assessment may lead to improved retention for individuals who begin treatment in residential treatment, which may be encouraging to the many state Medicaid programs that are adopting ASAM-based criteria. More research is needed to clarify the mechanism by which ASAM leads to improved outcomes and to clarify how to maximize the potential benefits of ASAM, such as through patient-centered implementation.