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BACKGROUND: Older patients with advanced chronic kidney disease (CKD) face difficult decisions about managing kidney failure, frequently experiencing decisional conflict, regret, and treatment misaligned with preferences. OBJECTIVE: To assess whether a decision aid about kidney replacement therapy improved decisional quality compared with usual care. DESIGN: Multicenter, randomized, controlled trial. (ClinicalTrials.gov: NCT03522740). SETTING: 8 outpatient nephrology clinics associated with 4 U.S. centers. PARTICIPANTS: English-fluent patients, 70 years and older with nondialysis CKD stages 4 to 5 recruited from 2018 to 2020. INTERVENTION: DART (Decision-Aid for Renal Therapy) is an interactive, web-based decision aid for older adults with CKD. Both groups received written education about treatments. MEASUREMENTS: Change in the decisional conflict scale (DCS) score from baseline to 3, 6, 12, and 18 months. Secondary outcomes included change in prognostic and treatment knowledge and change in uncertainty. RESULTS: Among 400 participants, 363 were randomly assigned: 180 to usual care, 183 to DART. Decisional quality improved with DART with mean DCS declining compared with control (mean difference, -8.5 [95% CI, -12.0 to -5.0]; P < 0.001), with similar findings at 6 months, attenuating thereafter. At 3 months, knowledge improved with DART versus usual care (mean difference, 7.2 [CI, 3.7 to 10.7]; P < 0.001); similar findings at 6 months were modestly attenuated at 18 months (mean difference, 5.9 [CI, 1.4 to 10.3]; P = 0.010). Treatment preferences changed from 58% "unsure" at baseline to 28%, 20%, 23%, and 14% at 3, 6, 12, and 18 months, respectively, with DART, versus 51% to 38%, 35%, 32%, and 18% with usual care. LIMITATION: Latinx patients were underrepresented. CONCLUSION: DART improved decision quality and clarified treatment preferences among older adults with advanced CKD for 6 months after the DART intervention. PRIMARY FUNDING SOURCE: Patient-Centered Outcomes Research Institute (PCORI).
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Técnicas de Apoio para a Decisão , Insuficiência Renal Crônica , Humanos , Idoso , Insuficiência Renal Crônica/terapia , Prognóstico , Pacientes , Tomada de DecisõesRESUMO
RATIONALE & OBJECTIVE: Few older adults with kidney failure engage in shared decision making (SDM) for kidney replacement therapy. The lack of instruments to assess SDM-relevant knowledge domains may contribute to this. We assessed the reliability and validity of a new instrument, the Rating of CKD Knowledge Older Adults (Know-CKD). STUDY DESIGN: Multistage process, including a stakeholder-engaged development phase, pilot testing, and validation of a knowledge instrument using a cross-sectional survey of older adults with CKD. SETTING & PARTICIPANTS: 363 patients aged 70+years with nondialysis advanced chronic kidney disease (CKD) (estimated glomerular filtration rate [eGFR]<30mL/min/1.73m2) in Boston, Chicago, Portland, ME, and San Diego from June 2018 and January 2020. EXPOSURE: Educational level, higher literacy (Single Item Literacy Screener [SILS]) and numeracy (Subjective Numeracy Scale [SNS]), having participated in clinic-sponsored dialysis education, and self-reported "feeling informed" about options for treatment. OUTCOME: Validity and reliability of the Know-CKD instrument. ANALYTICAL APPROACH: Reliability was assessed with the Kuder-Richardson-20 coefficient. Construct validity was demonstrated by testing a priori hypotheses using t test, analysis of variance (ANOVA) tests, and linear regression analyses. RESULTS: The mean (± SD) participant age was 77.6±5.9 years, and mean eGFR was 22.7±7.2mL/min/1.73m2; 281 participants (78%) self-reported as White. The 12-item Know-CKD assessment had good reliability (Kuder-Richardson-20 reliability coefficient=0.75), and a mean score of 58.2% ± 22.3 SD. The subscales did not attain acceptable reliability. The proportion answering correctly on each item ranged from 20.1% to 91.7%. In examining construct validity, the hypothesized associations held; Know-CKD significantly associated with higher education (ß=6.98 [95% CI, 1.34-12.61], P=0.02), health literacy (ß = -12.67 [95% CI, -19.49 to-5.86], P≤0.001), numeracy per 10% higher (ß=1.85 [95% CI, 1.02-2.69], P≤0.001), and attendance at dialysis class (ß=18.28 [95% CI, 13.30-23.27], P≤0.001). These associations were also observed for the subscales except for prognosis (not associated with literacy or numeracy). LIMITATIONS: Know-CKD is only available in English and has been used only in research settings. CONCLUSIONS: For older adults facing dialysis initiation decisions, Know-CKD is a valid, reliable, and easy to administer measure of knowledge. Further research should examine the relationship of kidney disease knowledge and SDM, patient satisfaction, and clinical outcomes. PLAIN-LANGUAGE SUMMARY: The Rating of CKD Knowledge Among Older Adults (Know-CKD) study measures knowledge of chronic kidney disease (CKD) and is designed for older adults. Most existing knowledge measures for CKD focus on people of all ages and all CKD stages. This measure is useful because it will allow researchers to assess how well patient education efforts are working. Patient education is a way to help patients make decisions about their care. We describe how the measure was developed by a team of doctors, researchers, and patients, and how the measure performed among persons with advanced CKD aged 70 years and older. Know-CKD can inform efforts to improve shared decision-making research and practice for older patients with kidney disease.
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RATIONALE & OBJECTIVE: Older adults with advanced chronic kidney disease (CKD) face difficult decisions about dialysis initiation. Although shared decision making (SDM) can help align patient preferences and values with treatment options, the extent to which older patients with CKD experience SDM remains unknown. STUDY DESIGN: A cross-sectional analysis of patient surveys examining decisional readiness, treatment options education, care partner support, and SDM. SETTING & PARTICIPANTS: Adults aged 70 years or older from Boston, Chicago, San Diego, or Portland (Maine) with nondialysis advanced CKD. PREDICTORS: Decisional readiness factors, treatment options education, and care partner support. OUTCOMES: Primary: SDM measured by the 9-item Shared Decision Making Questionnaire (SDM-Q-9) instrument, with higher scores reflecting greater SDM. Exploratory: Factors associated with SDM. ANALYTICAL APPROACH: We used multivariable linear regression models to examine the associations between SDM and predictors, controlling for demographic and health factors. RESULTS: Among 350 participants, mean age was 78 ± 6 years, 58% were male, 13% identified as Black, and 48% had diabetes. Mean SDM-Q-9 score was 52 ± 28. SDM item agreement ranged from 41% of participants agreeing that "my doctor and I selected a treatment option together" to 73% agreeing that "my doctor told me that there are different options for treating my medical condition." In multivariable analysis adjusted for demographic characteristics, lower estimated glomerular filtration rate, and diabetes, being "well informed" and "very well informed" about kidney treatment options, having higher decisional certainty, and attendance at a kidney treatment options class were independently associated with higher SDM-Q-9 scores. LIMITATIONS: The cross-sectional study design limits the ability to make temporal associations between SDM and the predictors. CONCLUSIONS: Many older patients with CKD do not experience SDM when making dialysis decisions, emphasizing the need for greater access to and delivery of education for individuals with advanced CKD.
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Tomada de Decisão Compartilhada , Insuficiência Renal Crônica , Humanos , Masculino , Idoso , Idoso de 80 Anos ou mais , Feminino , Estudos Transversais , Insuficiência Renal Crônica/terapia , Tomada de Decisões , Inquéritos e Questionários , Participação do PacienteRESUMO
Communication infrastructure theory (CIT) suggests that an ethnic enclave's communication infrastructure (CI) shapes the community's unique social processes that give rise to social determinants of health. A well-integrated CI in ethnic enclaves that includes community-based organizations (CBOs), local ethnic media, and resident networks is positively associated with residents' health outcomes. Through storytelling, CBOs and other community actors obtain and disseminate information, develop a sense of belonging to the community, and participate in problem-solving activities, including health-related ones. Local ethnic media can play an important role in building a network of neighborhood storytellers by catalyzing storytelling about local resources and problems. We propose three main categories of "catalyzing storytelling" by local ethnic media: 1) CBO stories, 2) geo-ethnic stories, and 3) presentation of root causes and solutions for community problems. This study examines the content of Boston Chinatown's local ethnic news media outlet, Sampan, to assess the three categories of catalyzing stories. We analyzed a total of 340 news articles and one interview with the editor. The findings showed that Sampan tells stories in all three categories. Based on our findings, we further develop the concept of catalyzing as a communication process in CIT. This new concept in CIT has practical implications for public health communication as it demonstrates a process through which local ethnic media can foster community engagement and health. Health communicators should seek opportunities to work collaboratively with local ethnic media in ways that will serve to catalyze community.
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Comunicação , Comunicação em Saúde , Boston , Etnicidade , Humanos , Meios de Comunicação de Massa , Características de ResidênciaRESUMO
BACKGROUND: Older patients with advanced CKD are at high risk for serious complications and death, yet few discuss advance care planning (ACP) with their kidney clinicians. Examining barriers and facilitators to ACP among such patients might help identify patient-centered opportunities for improvement. METHODS: In semistructured interviews in March through August 2019 with purposively sampled patients (aged ≥70 years, CKD stages 4-5, nondialysis), care partners, and clinicians at clinics in across the United States, participants described discussions, factors contributing to ACP completion or avoidance, and perceived value of ACP. We used thematic analysis to analyze data. RESULTS: We conducted 68 semistructured interviews with 23 patients, 19 care partners, and 26 clinicians. Only seven of 26 (27%) clinicians routinely discussed ACP. About half of the patients had documented ACP, mostly outside the health care system. We found divergent ACP definitions and perspectives; kidney clinicians largely defined ACP as completion of formal documentation, whereas patients viewed it more holistically, wanting discussions about goals, prognosis, and disease trajectory. Clinicians avoided ACP with patients from minority groups, perceiving cultural or religious barriers. Four themes and subthemes informing variation in decisions to discuss ACP and approaches emerged: (1) role ambiguity and responsibility for ACP, (2) questioning the value of ACP, (3) confronting institutional barriers (time, training, reimbursement, and the electronic medical record, EMR), and (4) consequences of avoiding ACP (disparities in ACP access and overconfidence that patients' wishes are known). CONCLUSIONS: Patients, care partners, and clinicians hold discordant views about the responsibility for discussing ACP and the scope for it. This presents critical barriers to the process, leaving ACP insufficiently discussed with older adults with advanced CKD.
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Planejamento Antecipado de Cuidados , Comunicação , Falência Renal Crônica/terapia , Preferência do Paciente , Papel do Médico , Médicos , Adulto , Planejamento Antecipado de Cuidados/estatística & dados numéricos , Idoso , Idoso de 80 Anos ou mais , Atitude do Pessoal de Saúde , Cuidadores , Educação Médica , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Disparidades em Assistência à Saúde , Humanos , Reembolso de Seguro de Saúde , Entrevistas como Assunto , Falência Renal Crônica/complicações , Masculino , Pessoa de Meia-Idade , Grupos Minoritários , Planejamento de Assistência ao Paciente , Médicos/economia , Médicos/estatística & dados numéricos , Prognóstico , Fatores de Tempo , Estados UnidosRESUMO
RATIONALE & OBJECTIVE: Education programs are needed for people with advanced chronic kidney disease to understand kidney failure treatment options and participate in shared decision-making (SDM). Little is known about the content and accessibility of current education programs or whether they support SDM. STUDY DESIGN: Stakeholder-engaged, mixed-methods design incorporating qualitative observations and interviews, and a quantitative content analysis of slide presentations. SETTING & PARTICIPANTS: Four sites located in Boston, Chicago, Portland (Maine), and San Diego. ANALYTICAL APPROACH: Thematic analysis based on the Ottawa Framework (observations and interviews) and descriptive statistical analysis (slide presentations). RESULTS: Data were collected from observations of 9 education sessions, 5 semistructured interviews with educators, and 133 educational slide presentations. Sites offered group classes or one-on-one sessions. Development, quality, and accuracy of educational materials varied widely. Educators emphasized dialysis (often in-center hemodialysis), with little mention of conservative management. Educators reported patients were often referred too late to education sessions and that some patients become overwhelmed if they learn of the implications of kidney failure in a group setting. Commonly, sessions were general and did not provide opportunities for tailored information most supportive of SDM. Few nephrologists were involved in education sessions or aware of the educational content. Content gaps included prognosis, decision support, mental health and cognition, advance care planning, cost, and diet. Slide presentations used did not consistently reflect best practices related to health literacy. LIMITATIONS: Findings may not be broadly generalizable. CONCLUSIONS: Education sessions focused on kidney failure treatment options do not consistently follow best practices related to health literacy or for supporting SDM. To facilitate SDM, the establishment of expectations for kidney failure treatment options should be clearly defined and integrated into the clinical workflow. Addressing content gaps, health literacy, and communication with nephrologists is necessary to improve patient education in the setting of advanced chronic kidney disease.
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Educação de Pacientes como Assunto , Insuficiência Renal Crônica , Tomada de Decisões , Humanos , Nefrologistas , Participação do Paciente , Pesquisa Qualitativa , Diálise Renal , Insuficiência Renal Crônica/diagnóstico , Insuficiência Renal Crônica/terapiaRESUMO
OBJECTIVE: Knowledge Translation (KT) is the exchange, synthesis, and ethically-sound application of knowledge. A case study methodology is used to examine KT at the organizational level of the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) program. METHOD: The study used purposeful sampling to select WIC informants from state WIC agencies to participate in semi-structured interviews about their individual experiences during the 2009 WIC regulation change process. Thematic coding of retrospective semi-structured interviews with key informants from WIC state agencies revealed key components of the state-level WIC regulation implementation process, and key constructs of Organizational Readiness for Knowledge Translation in the WIC program. RESULTS: WIC informants highlight that decisions made by WIC state agencies regarding how to appraise, synthesize, and adapt evidence or regulation change are constrained by the KT decisions made by federal agencies. WIC state agencies should assess their level of readiness for KT in terms of 1) innovation readiness; 2) personal readiness; and 3) institutional readiness. CONCLUSIONS: This WIC case study can help decision-makers to understand the KT process of implementing evidence-informed regulation changes, identify factors that could influence states' ability to be prepared for implementing changes, and gauge "practicality" of future WIC regulation changes.
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Assistência Alimentar , Pesquisa Translacional Biomédica , Criança , Suplementos Nutricionais , Feminino , Humanos , Lactente , Estudos RetrospectivosRESUMO
The health benefits of having a supportive community and access to community resources are well documented and for many immigrant communities, community-based organizations (CBOs) play an important role by providing culturally competent services. The current study uses communication infrastructure theory (CIT) to examine the associations between connections to CBOs, civic engagement, and protective health behaviors within the context of Boston Chinatown's Chinese immigrant community. According to CIT, neighborhood communication resources encourage residents to engage in civic activities and health-related problem-solving behaviors. To assess these associations, data from a needs assessment survey (N = 360) were analyzed. Results showed that connections to CBOs had a positive association with total number of protective health behaviors. Civic engagement was not found to be associated with health behaviors. We also found no indirect effect of connections to CBOs on the protective health behaviors via civic engagement. These results carry important theoretical and practical implications.
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Recursos Comunitários , Emigrantes e Imigrantes , Boston , Comunicação , Humanos , Avaliação das NecessidadesRESUMO
Expert groups, including the U.S. Preventive Services Task Force (USPSTF), recommend a range of clinical preventive services for persons at average risk for disease. Use of these services often is substantially lower among racial and ethnic minority groups, rural residents, and persons of lower socioeconomic status. On 19 and 20 June 2019, the National Institutes of Health (NIH) convened the Pathways to Prevention Workshop: Achieving Health Equity in Preventive Services to assess the available evidence on disparities in the use of 10 USPSTF-recommended clinical preventive services for cancer, heart disease, and diabetes. The workshop was cosponsored by the NIH Office of Disease Prevention; National Institute on Minority Health and Health Disparities; National Cancer Institute; National Heart, Lung, and Blood Institute; and National Institute of Diabetes and Digestive and Kidney Diseases. A multidisciplinary working group developed the agenda, and an Evidence-based Practice Center prepared the evidence report. During the workshop, invited experts considered the evidence, with discussion among attendees. After weighing evidence from the review, presentations, and public comments, an independent panel prepared a draft report that was posted for public comment. This final report summarizes the panel's findings, identifying current gaps in knowledge. The panel made 26 recommendations for new research and methods development to improve implementation of proven services to reduce disparities in preventable conditions.
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Equidade em Saúde , National Institutes of Health (U.S.) , Serviços Preventivos de Saúde/organização & administração , Adulto , Educação , Equidade em Saúde/organização & administração , Disparidades em Assistência à Saúde/organização & administração , Humanos , Estados UnidosRESUMO
Background. This article looks at the role that arts, culture, and creativity play in promoting social cohesion and community well-being. It presents research on the role that a community arts center plays in an ethnic enclave that is under stress of immigration and gentrification. Method. An academic-community research partnership conducted this research. A mixed-methods approach was used. Twenty-four interviews were conducted with stakeholders (including community leaders, neighborhood residents, and business owners). Surveys (n = 102) were done of community members and those who participate in the Center activities. Results. Interviewees and survey respondents point to the importance of the ethnic enclave as a close-knot community that helps to foster a sense of belonging, security, and cultural identity. Arts, culture, and creativity plays a role in maintaining this sense of social cohesion, despite the threat of gentrification. Engagement in the arts and creative practice are important for buffering the stress of immigration. Discussion. The center has an important role as a critical cultural, civic, and creative space for the neighborhood and the broader community who sees the ethnic enclave as their cultural home.
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Emigração e Imigração , Mudança Social , Criatividade , Humanos , Características de Residência , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Despite recent growth in palliative care programs palliative care remains underutilized. Studies suggest that patients and providers commonly associate palliative care with end of life, often leading to misconceptions and late referrals. OBJECTIVE: To characterize self-reported palliative care knowledge and misconceptions about palliative care among US adults and demographic, health, and social role factors associated with knowledge and misconceptions. DESIGN: We conducted secondary data analysis of nationally representative, self-reported data from the 2018 Health Information National Trends Survey (HINTS) 5, Cycle 2. We examined associations between knowledge and misconceptions about palliative care together with demographics, health care access, health status, and social roles. PARTICIPANTS: 3504 US adults. 2594 included in the first analysis after omitting missing cases; 683 who reported knowing about palliative care were included in the second analysis. MAIN MEASURES: Palliative care knowledge was self-reported in response to: "How would you describe your level of knowledge about palliative care?" Level of misconceptions was based on a series of factual and attitudinal statements about palliative care. KEY RESULTS: Among US adults, 28.8% report knowing about palliative care, but only 12.6% report knowing what palliative care is and hold no misconceptions. Those most likely to report knowing about palliative care are female, college-educated, higher income, have a primary health care provider, or are a caregiver. Among those who report knowing about palliative care, misconceptions were common: 44.4% automatically think of death, 38.0% equate palliative care with hospice, 17.8% believe you must stop other treatments, and 15.9% see palliative care as giving up. CONCLUSIONS: US adults who have some knowledge of palliative care are most likely to confuse it with hospice but are less likely to see it as requiring forgoing treatment or as giving up. Primary care clinicians should be encouraged to communicate about palliative care with patients.
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Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Adulto , Cuidadores , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Inquéritos e QuestionáriosAssuntos
Tomada de Decisões , Insuficiência Renal Crônica , Humanos , Idoso , Insuficiência Renal Crônica/psicologia , Insuficiência Renal Crônica/terapia , Insuficiência Renal Crônica/complicações , Masculino , Feminino , Preferência do Paciente , Participação do Paciente , Idoso de 80 Anos ou maisRESUMO
This study developed and evaluated a visual approach to promoting environmental health literacy about highway pollution. The Interactive Map of Chinatown Traffic Pollution was the centerpiece of a communication approach designed to make complex scientific information about traffic-related air pollution comprehensible to Chinese immigrants with limited English proficiency. The map enabled visualization of the spatial distribution of ultrafine particles (less than 100 nanometers in diameter), a toxic and invisible form of air pollution, in Boston Chinatown. A university-community partnership enabled design of intergenerational training sessions aimed toward empowering community members to take health-promoting actions that reduce exposure to ultrafine particulate pollution. A mixed methods approach was taken to evaluation. Nine high school youth learned to use the map and then tutored adults recruited from English as a Second Language (ESL) classes and from a community workshop. Seventy-three of these adults completed a pre-post survey measuring change in three domains: pollution knowledge, attitudes toward environmental issues, and self-efficacy in using maps. Adult participants demonstrated statistically significant improvements in all three domains (Wilcoxon signed-rank test, all p < 0.01). Seventeen adults and nine youth participated in interviews. Interview participants reported adjusting daily routines to reduce exposure to pollution.
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Poluição do Ar , Atitude , Emigrantes e Imigrantes/psicologia , Saúde Ambiental , Letramento em Saúde , Mapas como Assunto , Adolescente , Adulto , Boston , China/etnologia , Relações Comunidade-Instituição , Feminino , Humanos , Entrevistas como Assunto , Conhecimento , Masculino , Pessoa de Meia-Idade , Veículos Automotores , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Although shared decision-making (SDM) can better align patient preferences with treatment, barriers remain incompletely understood and the impact on patient satisfaction is unknown. METHODS: This is a qualitative study with semistructured interviews. A purposive sample of prevalent dialysis patients ≥65 years of age at two facilities in Greater Boston were selected for diversity in time from initiation, race, modality and vintage. A codebook was developed and interrater reliability was 89%. Codes were discussed and organized into themes. RESULTS: A total of 31 interviews with 23 in-center hemodialysis patients, 1 home hemodialysis patient and 7 peritoneal dialysis patients were completed. The mean age was 76 ± 9 years. Two dominant themes (with related subthemes) emerged: decision-making experiences and satisfaction, and barriers to SDM. Subthemes included negative versus positive decision-making experiences, struggling for autonomy, being a 'good patient' and lack of choice. In spite of believing that dialysis initiation should be the patient's choice, no patients perceived that they had made a choice. Patients explained that this is due to the perception of imminent death or that the decision to start dialysis belonged to physicians. Clinicians and family frequently overrode patient preferences, with patient autonomy honored mostly to select dialysis modality. Poor decision-making experiences were associated with low treatment satisfaction. CONCLUSIONS: Despite recommendations for SDM, many older patients were unaware that dialysis initiation was voluntary, held mistaken beliefs about their prognosis and were not engaged in decision-making, resulting in poor satisfaction. Patients desired greater information, specifically focusing on the acuity of their choice, prognosis and goals of care.
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Comportamento de Escolha , Tomada de Decisões , Satisfação do Paciente , Diálise Renal , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Seleção de Pacientes , Percepção , Médicos , Pesquisa QualitativaRESUMO
OBJECTIVE: Great Taste, Less Waste (GTLW), a communications campaign, capitalized on the synergy between healthy eating and eco-friendly behaviors to motivate children to bring more fruits and vegetables and fewer sugar-sweetened beverages (SSBs) to school. METHODS: A cluster-randomized trial in Eastern Massachusetts elementary schools in 2011-2012 tested the hypothesis that GTLW would improve the quality of foods from home more than a nutrition-only campaign--Foods 2 Choose (F2C)--or control. Lunch and snack items from home were measured at baseline and 7 months later using digital photography. Mixed linear models compared change in mean servings of fruits, vegetables, and SSBs among groups, and change in mean prevalence of packaging type. Change in prevalence of food items of interest was compared among groups using generalized linear models. RESULTS: Five hundred and eighty-two third and fourth graders from 82 classrooms in 12 schools participated. At follow-up, no significant differences were observed between groups in change in mean servings or change in prevalence of items of interest. No packaging differences were observed. CONCLUSION: GTLW was well received, but no significant changes were observed in the quality of food brought to school. Whether classrooms are an effective environment for change remains to be explored. ClinicalTrials.gov identifier: NCT0157384.
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Ciências da Nutrição Infantil/educação , Conservação dos Recursos Naturais , Qualidade dos Alimentos , Almoço , Lista de Checagem , Criança , Feminino , Frutas , Humanos , Masculino , Massachusetts , Pais/educação , Fotografação , Instituições Acadêmicas , Fatores Socioeconômicos , Desenvolvimento de Pessoal/métodos , Percepção Gustatória , Ensino/métodos , VerdurasRESUMO
BACKGROUND AND OBJECTIVES: Coronavirus disease 2019 (COVID-19) disrupted medical care across health care settings for older patients with advanced CKD. Understanding how shared decision making for kidney treatment decisions was influenced by the uncertainty of an evolving pandemic can provide insights for supporting shared decision making through the current and future public health crises. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: We performed thematic and narrative analyses of semistructured interviews with patients (CKD stages 4 and 5, age 70+), care partners, and clinicians from Boston, Portland (Maine), San Diego, and Chicago from August to December 2020. RESULTS: We interviewed 76 participants (39 patients, 17 care partners, and 20 clinicians). Among patient participants, 13 (33%) patients identified as Black, and seven (18%) had initiated dialysis. Four themes with corresponding subthemes emerged related to treatment decision making and the COVID-19 pandemic: (1) adapting to changed educational and patient engagement practices (patient barriers to care and new opportunities for telemedicine); (2) reconceptualizing vulnerability (clinician awareness of illness severity increased and limited discussions of patient COVID-19 vulnerability); (3) embracing home-based dialysis but not conservative management (openness to home-based modalities and limited discussion of conservative management and advanced care planning); and (4) satisfaction and safety with treatment decisions despite conditions of uncertainty. CONCLUSIONS: Although clinicians perceived greater vulnerability among older patients CKD and more readily encouraged home-based modalities during the COVID-19 pandemic, their discussions of vulnerability, advance care planning, and conservative management remained limited, suggesting areas for improvement. Clinicians reported burnout caused by the pandemic, increased time demands, and workforce limitations, whereas patients remained satisfied with their treatment choices despite uncertainty. CLINICAL TRIAL REGISTRY NAME AND REGISTRATION NUMBER: Decision Aid for Renal Therapy (DART), NCT03522740.
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COVID-19 , Falência Renal Crônica , Idoso , Tomada de Decisões , Humanos , Rim , Falência Renal Crônica/terapia , Pandemias , Pesquisa Qualitativa , IncertezaRESUMO
OBJECTIVE: Studies assessing awareness and knowledge of alcohol-attributable causes of death and disease have been conducted across the globe to develop and evaluate public information campaigns to increase alcohol health literacy. Because of variation in measurement, the results of these studies cannot be easily compared to determine relative rates of high versus low alcohol health literacy across countries or regions. This review catalogs the samples and survey items that have been used and presents recommendations for how to improve alcohol health literacy survey research. METHOD: Searches for studies surveying general populations for knowledge of the associations between alcohol and nine alcohol-related health harms--fetal alcohol syndrome, liver cirrhosis, cancer, pancreatitis, tuberculosis, epilepsy, cardiovascular disease, lower respiratory infections, and conduction disorders--were conducted in PubMed and Embase. Survey results published between January 2007 and April 2018 were reviewed for eligibility. Of 791 studies initially identified, 76 were included in the final analysis. RESULTS: Survey items varied substantially in the types of response options used (e.g., yes/no, agree/disagree, Likert scales, multiple choice); terminology for drinking behavior (e.g., alcohol consumption vs. alcohol abuse), risk-factor framing (e.g., cause vs. association), and health harms (e.g., cardiovascular disease vs. stroke); and how their results were presented (e.g., numbers and/or percentages of respondents vs. odds ratios). Very few studies used probability samples. CONCLUSIONS: The current state of the research literature makes it impossible to identify patterns of alcohol health literacy globally or even to compare intra-country studies across time. We recommend that a database of standard, validated questions for assessing knowledge about the relationship between alcohol and several key health outcomes be assembled and made available to the research community.
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Alcoolismo , Letramento em Saúde , Consumo de Bebidas Alcoólicas/epidemiologia , Humanos , Inquéritos e QuestionáriosRESUMO
Importance: Telehealth has been posited as a cost-effective means for improving access to care for persons with chronic conditions, including kidney disease. Perceptions of telehealth among older patients with chronic illness, their care partners, and clinicians are largely unknown but are critical to successful telehealth use and expansion efforts. Objective: To identify patient, care partner, and nephrologists' perceptions of the patient-centeredness, benefits, drawbacks of telehealth compared to in-person visits. Design, Setting, and Participants: This qualitative study used semistructured interviews conducted from August to December 2020 with purposively sampled patients (aged 70 years or older, chronic kidney disease stages 4 to 5), care partners, and clinicians in Boston, Massachusetts; Chicago, Illinois; Portland, Maine; and San Diego, California. Main Outcomes and Measures: Participants described telehealth experiences, including factors contributing to and impeding engagement, satisfaction, and quality of care. Thematic analysis was used to analyze data. Results: Of 60 interviews, 19 (32%) were with clinicians, 30 (50%) with patients, and 11 (18%) with care partners; 16 clinicians (84%) were nephrologists; 17 patient participants (43%) were non-Hispanic Black, and 38 (67%) were women. Four overarching themes characterized telehealth's benefits and drawbacks for patient-centered care among older, chronically ill adults: inconsistent quality of care, patient experience and engagement, loss of connection and mistrust (eg, challenges discussing bad news), and disparities with accessing telehealth. Although telehealth improved convenience and care partner engagement, participants expressed concerns about clinical effectiveness and limitations of virtual physical examinations and potentially widening disparities in access. Many participants shared concerns about harms to the patient-clinician relationship, limited ability to comfort patients in virtual settings, and reduced patient trust. Conclusions and Relevance: Older patients, care partners, and kidney clinicians (ie, nephrologists and physician assistants) shared divergent views of patient-centered telehealth care, especially its clinical effectiveness, patient experience, access to care, and clinician-patient relationship. Understanding older patients' and kidney clinicians' perceptions of telehealth elucidate barriers that should be addressed to promote high-quality care and telehealth use.
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Cuidadores/psicologia , Falência Renal Crônica/psicologia , Falência Renal Crônica/terapia , Participação do Paciente/psicologia , Preferência do Paciente/psicologia , Idoso , Atitude do Pessoal de Saúde , Comunicação , Tomada de Decisões , Feminino , Humanos , Masculino , Pesquisa Qualitativa , TelemedicinaRESUMO
Most health literacy research to date has assessed health literacy using either general reading tests or text-based appraisals of reading and numeracy skills, yet the definition of health literacy includes domains beyond reading ability. Effective oral communication between doctor and patient is an important component of health literacy, but only recently have efforts been made to develop measures that tap into domains beyond those that can be assessed with text-based measures. Focusing on oral exchange, this article describes computer-assisted approaches to quantifying word use and the development of three word-use measures that can be used to study health literacy in transcripts of clinical encounters. The measures can be used to assess either the expressed literacy level of patients or the aural literacy demands made by doctors. Importantly, the computer-assisted quantitative measures described here make it possible for word use to be analyzed at a level of detail that human raters would be hard pressed to attain.
Assuntos
Comunicação , Letramento em Saúde , Relações Médico-Paciente , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Idioma , Masculino , Pessoa de Meia-Idade , Reumatologia , Adulto JovemRESUMO
A wealth of health information is available online, but we do not fully understand the implications for health communication. This study examined whether health information seekers who turn to the Internet first differ from those who turn elsewhere. Data from the 2,338 respondents to the mail portion of the National Cancer Institute's Health Information National Trends Survey (HINTS) 2007 who reported looking for health information for themselves were analyzed. Logistic regression was used to examine whether health information seekers turning to the Internet first differed in terms of demographics, information preferences and seeking confidence, and communication with providers from those using other sources. In the final model, Internet users were younger, more educated, higher income, preferred numbers rather than words to describe chance, and think it is very important to get personal medical information electronically. There were no differences in terms of gender, health status, confidence seeking health information, or communication with providers. Health information seekers who turn to the Internet first are different, both in terms of demographics and information preferences. As the use of communication technologies increases, health communicators need to be attentive to the potential for communication inequalities.