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1.
Am J Med Qual ; 38(5): 218-228, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37656607

RESUMO

Although lung cancer claims more lives than any other cancer in the United States, screening is severely underutilized, with <6% of eligible patients screened nationally in 2021 versus 76% for breast cancer and 67% for colorectal cancer. This article describes an effort to identify key reasons for the underutilization of lung cancer screening in a rural population and to develop interventions to address these barriers suitable for both a large health system and local community clinics. Data were generated from 26 stakeholder interviews (clinicians, clinical staff, and eligible patients), a review of key systems (Electronic Health Record and billing records), and feedback on the feasibility of several potential interventions by health care system staff. These data informed a human-centered design approach to identify possible interventions within a complex health care system by exposing gaps in care processes and electronic health record platforms that can lead patients to be overlooked for potentially life-saving screening. Deployed interventions included communication efforts focused on (1) increasing patient awareness, (2) improving physician patient identification, and (3) supporting patient management. Preliminary outcomes are discussed.


Assuntos
Detecção Precoce de Câncer , Neoplasias Pulmonares , Humanos , Estados Unidos , População Rural , Neoplasias Pulmonares/diagnóstico , Pacientes , Análise de Sistemas
2.
J Gen Intern Med ; 38(12): 2761-2767, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-37225959

RESUMO

BACKGROUND: Little is known about patient or provider experience and perceptions of stopping surveillance among older adults with a history of colon polyps. While guidelines recommend ceasing routine colorectal cancer screening in adults > 75 years and those with limited life expectancy, guidance for ceasing surveillance colonoscopy in those with prior colon polyps suggests individualizing recommendations. OBJECTIVE: Identify processes, experiences, and gaps around individualizing decisions to stop or continue surveillance colonoscopy for older adults and areas for improvement. DESIGN: Phenomenological qualitative study design using recorded semi-structured interviews from May 2020 through March 2021. PARTICIPANTS: 15 patients aged ≥ 65 in polyp surveillance, 12 primary care providers (PCPs), and 13 gastroenterologists (GIs). APPROACH: Data were analyzed using a mixed deductive (directed content analysis) and inductive (grounded theory) approach to identify themes related to stopping or continuing surveillance colonoscopies. KEY RESULTS: Analysis resulted in 24 themes and were clustered into three main categories: health and clinical considerations; communication and roles; and system-level processes or structures. Overall, the study found support for discussions around age 75-80 on stopping surveillance colonoscopy with considerations for health and life expectancy and that PCPs should take a primary role. However, systems and processes for scheduling surveillance colonoscopies largely bypass PCPs which reduces opportunities to both individualize recommendations and facilitate patients' decision-making. CONCLUSIONS: This study identified gaps in processes to implement current guidelines for individualizing surveillance colonoscopy as adults grow older, including opportunities to discuss stopping. Increasing the role of PCPs in polyp surveillance as patients grow older provides more opportunities for individualized recommendations, so patients can consider their own preferences, ask questions, and make a more informed choice for themselves. Changing existing systems and processes and creating supportive tools for shared decision-making specific to older adults with polyps would improve how surveillance colonoscopy is individualized in this population.


Assuntos
Colonoscopia , Neoplasias Colorretais , Humanos , Idoso , Idoso de 80 Anos ou mais , Neoplasias Colorretais/diagnóstico , Pesquisa Qualitativa
3.
BMC Palliat Care ; 22(1): 59, 2023 May 16.
Artigo em Inglês | MEDLINE | ID: mdl-37189073

RESUMO

INTRODUCTION: Early access to specialty palliative care is associated with better quality of life, less intensive end-of-life treatment and improved outcomes for patients with advanced cancer. However, significant variation exists in implementation and integration of palliative care. This study compares the organizational, sociocultural, and clinical factors that support or hinder palliative care integration across three U.S. cancer centers using an in-depth mixed methods case study design and proposes a middle range theory to further characterize specialty palliative care integration. METHODS: Mixed methods data collection included document review, semi-structured interviews, direct clinical observation, and context data related to site characteristics and patient demographics. A mixed inductive and deductive approach and triangulation was used to analyze and compare sites' palliative care delivery models, organizational structures, social norms, and clinician beliefs and practices. RESULTS: Sites included an urban center in the Midwest and two in the Southeast. Data included 62 clinician and 27 leader interviews, observations of 410 inpatient and outpatient encounters and seven non-encounter-based meetings, and multiple documents. Two sites had high levels of "favorable" organizational influences for specialty palliative care integration, including screening, policies, and other structures facilitating integration of specialty palliative care into advanced cancer care. The third site lacked formal organizational policies and structures for specialty palliative care, had a small specialty palliative care team, espoused an organizational identity linked to treatment innovation, and demonstrated strong social norms for oncologist primacy in decision making. This combination led to low levels of specialty palliative care integration and greater reliance on individual clinicians to initiate palliative care. CONCLUSION: Integration of specialty palliative care services in advanced cancer care was associated with a complex interaction of organization-level factors, social norms, and individual clinician orientation. The resulting middle range theory suggests that formal structures and policies for specialty palliative care combined with supportive social norms are associated with greater palliative care integration in advanced cancer care, and less influence of individual clinician preferences or tendencies to continue treatment. These results suggest multi-faceted efforts at different levels, including social norms, may be needed to improve specialty palliative care integration for advanced cancer patients.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Humanos , Cuidados Paliativos/métodos , Qualidade de Vida , Neoplasias/terapia , Atenção à Saúde
4.
Rheumatol Int ; 43(4): 627-638, 2023 04.
Artigo em Inglês | MEDLINE | ID: mdl-36125521

RESUMO

Patient-centered research should assess outcomes important to patients and include patient-reported outcome measures (PROMs) to assess health-related quality of life (HRQOL) domains. Using a well-known HRQOL framework (World Health Organization QOL, or WHOQOL), we reviewed established PROMs used with adults with different types of arthritis to evaluate their HRQOL domain coverage and psychometric evidence to help PROM users select measures and determine whether other measures should be validated and/or developed. Nineteen PROMs and 92 corresponding articles were reviewed to determine which HRQOL domains were assessed. To support a streamlined but rigorous review, we used a rating system based on criteria established in part through existing rubrics (e.g., OMERACT COSMIN). Psychometric properties were rated on a scale from 1 to 18, where 18 was strongest. We examined the intersection between level of domain coverage and extent of psychometric support. Measures most commonly assessed physical health and level of independence, while fewer assessed social relations, environment, and psychological health. No measures assessed spirituality and religion, which may be relevant depending on intended use. PROMs with higher psychometric evidence tended to assess a broader range of HRQOL domains. Rubric scores ranged from 3 to 16, with an average of 9.3. Prominent and psychometrically sound PROMs are available that cover many of the WHOQOL domains. While gaps exist in the domain of spirituality, future work should focus on refining optimal use of existing PROMs relevant for arthritis versus developing new measures. We provide guidance on selecting PROMs, to that end.


Assuntos
Artrite , Reumatologia , Humanos , Adulto , Qualidade de Vida , Medidas de Resultados Relatados pelo Paciente , Saúde Mental , Artrite/terapia , Psicometria , Inquéritos e Questionários
5.
Health Commun ; 38(12): 2730-2741, 2023 12.
Artigo em Inglês | MEDLINE | ID: mdl-35981599

RESUMO

We describe racially discordant oncology encounters involving EOL decision-making. Fifty-eight provider interviews were content analyzed using the tenets of problematic integration theory. We found EOL discussions between non-Black providers and their Black patients were often complex and anxiety-inducing. That anxiety consisted of (1) ontological uncertainty in which providers characterized the nature of Black patients as distrustful, especially in the context of clinical trials; (2) ontological and epistemological uncertainty in which provider intercultural incompetency and perceived lack of patient health literacy were normalized and intertwined with provider assumptions about patients' religion and support systems; (3) epistemological uncertainty as ambivalence in which providers' feelings conflicted when deciding whether to speak with family members they perceived as lacking health literacy; (4) divergence in which the provider advised palliative care while the family desired surgery or cancer-directed medical treatment; and (5) impossibility when an ontological uncertainty stance of Black distrust was seen as natural by providers and therefore impossible to change. Some communication strategies used were indirect stereotyping, negotiating, asking a series of value questions, blame-guilt framing, and avoidance. We concluded that provider perceptions of Black distrust, religion, and social support influenced their ability to communicate effectively with patients.


Assuntos
Tomada de Decisões , Assistência Terminal , Humanos , Grupos Raciais , Incerteza , Cuidados Paliativos , Morte , Comunicação
6.
J Womens Health (Larchmt) ; 31(11): 1547-1556, 2022 11.
Artigo em Inglês | MEDLINE | ID: mdl-36356184

RESUMO

Objective: Little is known about women's confidence in their breast cancer screening. We sought to characterize breast cancer screening confidence by imaging modality and clinically assessed breast density. Materials and Methods: We undertook a cross-sectional survey of women ages 40-74 years who received digital mammography (DM), digital breast tomosynthesis (DBT), and/or breast magnetic resonance imaging (MRI) with a normal screening exam in the prior year. The main outcome was women's confidence (Very, Somewhat, A little, Not at all) in their breast cancer screening detecting any cancer. Multivariable logistic regression identified correlates of being very confident in breast cancer screening by screening modality group: Group 1) DM vs. DBT and Group 2) DM or DBT alone vs. with supplemental MRI. Results: Overall, 2329 of 7439 (31.3%) invitees participated, with 30%-61% being very confident in their screening across modality and density subgroups. Having dense versus nondense breasts was associated with lower odds of being very confident (Group 1: odds ratio [OR]: 0.58; 95% confidence interval [CI]: 0.46-0.79; Group 2: OR: 0.56; 95% CI: 0.40-0.79). There were no differences by modality within Group 1, but for Group 2, women undergoing MRI had higher odds of being very confident (OR: 1.69; 95% CI: 1.21-2.37). Other correlates of greater screening confidence were as follows: Group 1-being offered a screening test choice and cost not influencing modality received, and Group 2-decision satisfaction and worry. Conclusions: Women with dense breasts had lower screening confidence regardless of screening modality and those undergoing MRI had higher confidence regardless of density. The importance of informing women about screening options is underscored by observed associations between screening choice, decision satisfaction, and screening confidence. ClinicalTrials.gov: NCT02980848.


Assuntos
Densidade da Mama , Neoplasias da Mama , Feminino , Humanos , Adulto , Pessoa de Meia-Idade , Idoso , Neoplasias da Mama/epidemiologia , Detecção Precoce de Câncer/métodos , Estudos Transversais , Mamografia , Programas de Rastreamento/métodos
7.
J Rheumatol ; 49(8): 948-955, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-35105712

RESUMO

OBJECTIVE: This study aimed to identify differences in patient empowerment based on biopsychosocial patient-reported measures, the magnitude of those differences, and which measures best explain differences in patient empowerment. METHODS: This was a cross-sectional observational study of 6918 adults with arthritis in the US. Data were collected from March 2019 to March 2020 through the Arthritis Foundation Live Yes! INSIGHTS program. Patient empowerment, measured by the Health Care Empowerment Questionnaire, included 2 scales: Patient Information Seeking and Healthcare Interaction Results. Patient-reported outcomes were measured using the Patient Reported Outcomes Measurement Information System (PROMIS)-29 and PROMIS emotional support scale. ANOVA assessed differences between groups, and Spearman rank correlation assessed correlations between variables. Hierarchical regression analysis determined the contributions of sociodemographic characteristics, arthritis type, and patient-reported health measures in explaining patient empowerment (α = 0.05). RESULTS: Empowerment was lower among those who were male, older, less educated, or who had lower income, osteoarthritis, less emotional support, or better physical function, although the effect was small-to-negligible for most of these variables in the final regression models. Empowerment did not differ by race/ethnicity in unadjusted or adjusted analysis. In final regression models, emotional support contributed the most to explaining patient empowerment. CONCLUSION: Emotional support is important for patient empowerment. This suggests that programs that seek to improve patient empowerment should target and measure effects on emotional support.


Assuntos
Osteoartrite , Participação do Paciente , Adulto , Estudos Transversais , Feminino , Humanos , Masculino , Medidas de Resultados Relatados pelo Paciente , Inquéritos e Questionários
8.
Med Decis Making ; 42(6): 783-794, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-35067067

RESUMO

BACKGROUND: We evaluate the construct validity of a proposed procedure for eliciting lay preferences among health care policy options, suited for structured surveys. It is illustrated with breast cancer screening, a domain in which people may have heterogeneous preferences. METHODS: Our procedure applies behavioral decision research principles to eliciting preferences among policy options expressed in quantitative terms. Three-hundred women older than 18 y without a history of breast cancer were recruited through Amazon MTurk. Participants evaluated 4 screening options for each of 4 groups of women, with varying risk of breast cancer. Each option was characterized by estimates of 3 primary outcomes: breast cancer deaths, false alarms, and overdiagnosis resulting in unnecessary treatment of cancers that would not progress. These estimates were based on those currently being developed by the Breast Cancer Surveillance Consortium. For each risk group, participants stated how frequently they would wish to receive screening, if the predicted outcomes applied to them. RESULTS: A preregistered test found that preferences were robust enough to be unaffected by the order of introducing and displaying the outcomes. Other tests of construct validity also suggested that respondents generally understood the task and expressed consistent preferences. Those preferences were related to participants' age and mammography history but not to measures of their numeracy, subjective numeracy, or demographics. There was considerable heterogeneity in their preferences. CONCLUSIONS: Members of the public can be engaged more fully in informing future screening guidelines if they evaluate the screening options characterized by the expected health outcomes expressed in quantitative terms. We offer and evaluate such a procedure, in terms of its construct validity with a diverse sample of women. HIGHLIGHTS: A novel survey method for eliciting lay preferences for breast cancer screening is proposed and evaluated in terms of its construct validity.Participants were generally insensitive to irrelevant task features (e.g., order of presentation) and sensitive to relevant ones (e.g., quantitative estimates of breast cancer risk, harms from screening).The proposed method elicits lay preferences in terms that can inform future screening guidelines, potentially improving communication between the public and policy makers.


Assuntos
Neoplasias da Mama , Detecção Precoce de Câncer , Neoplasias da Mama/diagnóstico , Detecção Precoce de Câncer/métodos , Feminino , Humanos , Mamografia , Programas de Rastreamento/métodos , Fatores de Risco
10.
Prev Med ; 151: 106542, 2021 10.
Artigo em Inglês | MEDLINE | ID: mdl-34217409

RESUMO

The COVID-19 pandemic resulted in numerous changes in delivery of healthcare services, including breast cancer screening and surveillance. Although facilities have implemented a number of strategies to provide services, women's thoughts and experiences related to breast cancer screening and surveillance during a pandemic are not well known. This focus group study with women across seven states recruited through the Breast Cancer Surveillance Consortium aims to remedy this gap in information. Thirty women ranging in age from 31 to 69 participated in five virtual focus groups, eight of whom had prior breast cancer. The first three focus groups covered a range of topics related to screening and surveillance during the pandemic while the last two groups covered experiences and then a review of sample communications to women about screening and surveillance during the pandemic to obtain reactions and recommendations. More than half of the women had screening or surveillance during the pandemic. Coding and analyses resulted in nine themes in three topic areas: decision factors, screening experiences, and preferred communications. Themes included weighing the risks of COVID-19 versus cancer; feelings that screening and surveillance were mostly safe but barriers may be heightened; feeling safe when undergoing screening but receiving a range of pandemic-specific communications from none to a lot; and wanting communications that are personalized, clear and concise. Based on these findings, providers and facilities should assure women of pandemic safety measures, review methods and content of communications, and assess for barriers to screening that may be amplified during the pandemic, including anxiety and access.


Assuntos
Neoplasias da Mama , COVID-19 , Neoplasias da Mama/diagnóstico , Detecção Precoce de Câncer , Feminino , Grupos Focais , Humanos , Pandemias , SARS-CoV-2 , Estados Unidos
11.
J Clin Epidemiol ; 135: 158-169, 2021 07.
Artigo em Inglês | MEDLINE | ID: mdl-33839241

RESUMO

OBJECTIVE: The Patient-Reported Outcomes Measurement Information System (PROMIS)-Plus-Osteoarthritis of the Knee (OAK) profile integrates universal PROMIS items with knee-specific items across 13 domains. We evaluated the psychometric properties of a subset of six domains associated with quality of life in people with OAK. STUDY DESIGN AND SETTING: In a cross-sectional study of OAK patients (n=600), we estimated reliability using Pearson and Spearman correlations with Knee Injury and Osteoarthritis Outcome Score (KOOS) subscores and known-groups validity with PROMIS Global Health. Measure responsiveness was tested via paired t-tests in a longitudinal study (n=238), pre/post total knee replacement. RESULTS: Across the six domains, internal consistency reliability (Cronbach's alpha) was 0.77-0.95 and test-retest reliability (intraclass correlation coefficients) was ≥0.90. Correlations with Knee Injury and Osteoarthritis Outcome Score (KOOS) subscores and PROMIS Global supported convergent and divergent validity. Known-groups validity testing revealed better scores in all domains for high vs. low global status groups, and knee-specific items added value in physical function and pain. All domains reflected (p<0.001) better health status scores at follow up. CONCLUSION: The six PROMIS-Plus-OAK profile domains demonstrated good psychometric characteristics. The measure integrates universal and knee-specific content to provide enhanced relevance, measurement precision and efficient administration for patient care and clinical research.


Assuntos
Nível de Saúde , Osteoartrite do Joelho/epidemiologia , Dor/epidemiologia , Medidas de Resultados Relatados pelo Paciente , Adolescente , Adulto , Idoso , Causalidade , Estudos Transversais , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Osteoartrite do Joelho/fisiopatologia , Osteoartrite do Joelho/psicologia , Dor/fisiopatologia , Psicometria , Qualidade de Vida/psicologia , Reprodutibilidade dos Testes , Estados Unidos/epidemiologia , Adulto Jovem
12.
Health Expect ; 24(2): 537-547, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-33503330

RESUMO

BACKGROUND: Patient empowerment can improve health-related outcomes and is important in chronic conditions, such as arthritis. This study aimed to validate the Health Care Empowerment Questionnaire (HCEQ), a patient-reported experience measure of empowerment, for use with patients with arthritis and other rheumatic diseases. METHODS: The HCEQ measures Patient Information Seeking (or Involvement in Decisions) and Healthcare Interaction Results (or Involvement in Interactions) and asks respondents to answer questions in two ways: whether they feel something happened and its importance to them. Face validity was assessed through qualitative data (n = 8, nominal group technique; n = 55, focus groups). Measure structure was assessed through confirmatory factor analysis (CFA); internal consistency was also assessed (n = 9226). Test-retest reliability was assessed with sub-sample of participants (n = 182). RESULTS: We found adequate face validity of the HCEQ for patients with arthritis. The CFA indicated good fit to the data for the two-factor structure of the HCEQ (RMSEA = 0.075; CFI = 0.987; TLI = 0.978; SRMR = 0.026). Internal consistency was strong (α=0.94 for both subscales). Test-retest reliability was moderate for Patient Information Seeking (ICC=0.67) and good for Healthcare Interaction Results (ICC=0.77). CONCLUSIONS: The HCEQ, with modifications, demonstrated promising psychometric properties within this sample, laying the foundation for further assessment. This work supports the HCEQ as an appropriate instrument for examining experiences with and perceived importance of empowerment in individuals with arthritis and other rheumatic conditions. PATIENT CONTRIBUTION: Patients contributed to the assessment of face validity. As a measure of patient empowerment, the HCEQ's use can enable further participation of patients in health care.


Assuntos
Artrite , Doenças Reumáticas , Artrite/terapia , Humanos , Participação do Paciente , Psicometria , Reprodutibilidade dos Testes , Doenças Reumáticas/terapia , Inquéritos e Questionários
13.
ACR Open Rheumatol ; 2(12): 750-759, 2020 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-33238079

RESUMO

OBJECTIVE: Patient-reported outcome measures (PROMs) are increasingly used in clinical settings but may not provide benefits to patients outside of health encounters. The Arthritis Foundation's Live Yes! Network provides an opportunity for PROM use by individuals and the network that assists individuals with managing their arthritis between encounters. Our objective was to develop a patient-reported outcomes platform for the network, Live Yes! INSIGHTS, using mixed methods and extensive stakeholder input. METHODS: A mixed methods longitudinal transformation design was used, starting with semistructured interviews to specify the main priorities of the program, literature review to identify potential PROMs, modified Delphi and nominal group technique to select final PROMs, and focus groups to guide program implementation, messaging, and use of results. We gathered input from 93 participants, including from individuals living with arthritis (74% of participants), caregivers, providers, researchers, and measurement experts. RESULTS: Our mixed methods study resulted in the selection of Patient-Reported Outcomes Measurement Information System (PROMIS)-29, PROMIS Emotional Support Short Form v2.0, and the Health Care Empowerment Questionnaire, to be deployed through a Qualtrics platform. Triangulation of data resulted in identification of potential risks and benefits, including confidentiality, ability to personally track and share data, and an opportunity to contribute to research. CONCLUSION: An accessible measurement system backed by psychometrically strong PROMs, created with robust stakeholder engagement, and linked to a national patient network sets the stage for individuals with arthritis to better monitor and improve health outcomes both outside and inside health care settings and for the network to customize programming to meet needs.

14.
BMC Palliat Care ; 19(1): 136, 2020 Aug 27.
Artigo em Inglês | MEDLINE | ID: mdl-32854691

RESUMO

BACKGROUND: A critical barrier to improving the quality of end-of-life (EOL) cancer care is our lack of understanding of the mechanisms underlying variation in EOL treatment intensity. This study aims to fill this gap by identifying 1) organizational and provider practice norms at major US cancer centers, and 2) how these norms influence provider decision making heuristics and patient expectations for EOL care, particularly for minority patients with advanced cancer. METHODS: This is a multi-center, qualitative case study at six National Comprehensive Cancer Network (NCCN) and National Cancer Institute (NCI) Comprehensive Cancer Centers. We will theoretically sample centers based upon National Quality Forum (NQF) endorsed EOL quality metrics and demographics to ensure heterogeneity in EOL intensity and region. A multidisciplinary team of clinician and non-clinician researchers will conduct direct observations, semi-structured interviews, and artifact collection. Participants will include: 1) cancer center and clinical service line administrators; 2) providers from medical, surgical, and radiation oncology; palliative or supportive care; intensive care; hospital medicine; and emergency medicine who see patients with cancer and have high clinical practice volume or high local influence (provider interviews and observations); and 3) adult patients with metastatic solid tumors and whom the provider would not be surprised if they died in the next 12 months and their caregivers (patient and caregiver interviews). Leadership interviews will probe about EOL institutional norms and organization. We will observe inpatient and outpatient care for two weeks. Provider interviews will use vignettes to probe explicit and implicit motivations for treatment choices. Semi-structured interviews with patients near EOL, or their family members and caregivers will explore past, current, and future decisions related to their cancer care. We will import transcribed field notes and interviews into Dedoose software for qualitative data management and analysis, and we will develop and apply a deductive and inductive codebook to the data. DISCUSSION: This study aims to improve our understanding of organizational and provider practice norms pertinent to EOL care in U.S. cancer centers. This research will ultimately be used to inform a provider-oriented intervention to improve EOL care for racial and ethnic minority patients with advanced cancer. TRIAL REGISTRATION: Clinicaltrials.gov ; NCT03780816 ; December 19, 2018.


Assuntos
Institutos de Câncer/normas , Protocolos Clínicos , Qualidade da Assistência à Saúde/normas , Assistência Terminal/normas , Institutos de Câncer/organização & administração , Humanos , Entrevistas como Assunto/métodos , Pesquisa Qualitativa
15.
J Patient Rep Outcomes ; 4(1): 17, 2020 Mar 02.
Artigo em Inglês | MEDLINE | ID: mdl-32124102

RESUMO

OBJECTIVE: It is unclear whether data from patient-reported outcome measures (PROMs) are captured and used by clinicians despite policy initiatives. We examined the extent to which fall risk and urinary incontinence (UI) reported on PROMS and provided to clinicians prior to a patient visit are subsequently captured in the electronic medical record (EMR). Additionally, we aimed to determine whether the use of PROMs and EMR documentation is higher for visits where PROM data was provided to clinicians. DESIGN: We conducted a cross-sectional patient-reported risk assessment survey and semi-structured interviews with clinicians to identify themes related to the use of PROMs. SETTING: Fourteen primary care clinics in the US (eight intervention and six control clinics), between October 2013 and May 2015. PARTICIPANTS: Primary care clinicians and older adult (≥66 years) patients completing a 46-item health risk assessment, including PROMs for fall risk and UI. INTERVENTION: Risk assessment results provided to the clinician or nurse practitioners prior to the clinic visit in intervention clinics; data was not provided in control clinics. MAIN OUTCOME: 1) Agreement between ICD-9 codes of fall risk or UI in the EMR and patient-reports, and 2) clinician experience of PROMs use and impact on coding. RESULTS: A total of 505 older adult patients were included in the study, 176 at control clinics and 329 at intervention clinics. While patient reports of fall risk and UI were readily captured by PROMs, this information was only coded in the EMR between 3% - 14% of the time (poor Kappa agreement). Intervention clinics performed slightly better than control clinics. Clinician interviews (n = 16) revealed low use of PROMs data with multiple barriers cited including poor access to data, high quantity of data, interruption to workflow, and a lack of training on PROMs. CONCLUSIONS: Current strategies of providing PROMs data prior to clinic visits may not be an effective way of communicating important health information to busy clinicians; ultimately resulting in underuse. Better systems of presenting PROMs data, and clinician training on the importance of PROMs and their use, is needed.

16.
J Gen Intern Med ; 35(6): 1654-1660, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-31792869

RESUMO

BACKGROUND: As of 2019, 37 US states have breast density notification laws. No qualitative study to date has examined women's perspectives about breast density in general or by states with and without notification laws. OBJECTIVE: Explore women's knowledge and perceptions of breast density and experiences of breast cancer screening across three states with and without notification laws. DESIGN: Qualitative research design using four focus groups conducted in 2017. PARTICIPANTS: Forty-seven women who had a recent normal mammogram and dense breasts in registry data obtained through the Breast Cancer Surveillance Consortium. APPROACH: Focus groups were 90 min, audio recorded, and transcribed for analysis. Data were analyzed using mixed deductive and inductive coding. KEY RESULTS: Women reported variable knowledge levels of personal breast density and breast density in general, even among women living in states with a notification law. A number of women were aware of the difficulty of detecting cancer with dense breasts, but only one knew that density increased breast cancer risk. Across all states, very few women reported receiving information about breast density during healthcare visits beyond being encouraged to get supplemental imaging or to pay for new mammography technology (i.e., breast tomosynthesis). Women offered more imaging or different technology held strong convictions that these were "better," even though knowledge of differences, effectiveness, or harms across technologies seemed limited. Women from all states expressed a strong desire for more information about breast density. CONCLUSIONS: More research needs to be done to understand how the medical community can best assist women in making informed decisions related to breast density, mammography, and supplemental screening. Options to explore include improved breast density notifications and education materials about breast density, continued development of personalized risk information tools, strategies for providers to discuss evidence and options based on risk stratification, and shared decision-making.


Assuntos
Densidade da Mama , Neoplasias da Mama , Neoplasias da Mama/diagnóstico por imagem , Detecção Precoce de Câncer , Feminino , Humanos , Mamografia , Programas de Rastreamento , Percepção
17.
Circ Heart Fail ; 12(6): e005751, 2019 06.
Artigo em Inglês | MEDLINE | ID: mdl-31163985

RESUMO

Background Bringing together generic and heart failure (HF)-specific items in a publicly available, patient-reported outcome measure may facilitate routine health status assessment for improving clinical care and shared decision-making, assessing quality of care, evaluating new interventions, and comparing groups with different conditions. Methods and Results We performed a mixed-methods study to develop and validate the PROMIS®-Plus-HF (Patient-Reported Outcomes Measurement Information System®-Plus-Heart Failure) profile measure-a HF-specific instrument based on the generic PROMIS. We conducted 8 focus groups with 61 patients with HF and phone interviews with 10 HF clinicians. The measure was developed via an iterative process of reviewing existing PROMIS items and developing and testing new HF items. In a 600-patient sample, we estimated reliability (internal consistency; test-retest, with n=100 participants). We conducted validity analyses using Pearson r and Spearman ρ correlations with Kansas City Cardiomyopathy Questionnaire subscores. In a longitudinal sample, we performed responsiveness testing (paired t tests) with 75 patients with HF receiving interventions with expected health status improvement. The PROMIS-Plus-HF measure comprises 86 items (64 existing; 22 new) across 18 domains. Internal consistency reliability (Cronbach α) coefficients ranged from 0.52 to 0.96, with α≥0.70 in 12 of 17 domains. Test-retest intraclass correlation coefficients were ≥0.90. Correlations with Kansas City Cardiomyopathy Questionnaire subscores supported expected convergent ( r/ρ>0.60) and divergent validity ( r/ρ<0.30). In the longitudinal sample, 10 of 18 domains had improved ( P<0.05) scores from baseline to follow-up. Conclusions The PROMIS-Plus-HF profile measure-a complete assessment of physical, mental, and social health-exhibited good psychometric characteristics and may facilitate patient-centered care and research. Subsets of domains and items can be used depending on the clinical or research purpose.


Assuntos
Insuficiência Cardíaca/reabilitação , Insuficiência Cardíaca/terapia , Medidas de Resultados Relatados pelo Paciente , Psicometria , Adolescente , Adulto , Feminino , Nível de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Reprodutibilidade dos Testes , Inquéritos e Questionários , Adulto Jovem
18.
Am J Med Qual ; 34(3): 251-259, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30196706

RESUMO

With the recent proliferation of quality improvement (QI) and patient safety (PS) education programs, guidance is needed on how to assess the effectiveness of these programs. Without a systematic approach, evaluation efforts may end up being disjointed, lead to excess participant burden, or yield unhelpful feedback because of poor fit with program priorities. This article presents a framework for developing a multilevel evaluation infrastructure using examples from the evaluation of the national Department of Veterans Affairs Chief Resident in Quality and Safety program, a 1-year, post-accreditation program to develop leadership and teaching skills in QI and PS. It illustrates how to apply the framework to establish evaluation priorities and methods, and shares sample results and how they are used to guide program improvements and track important outcomes at multiple levels. The framework is particularly relevant to other nonaccredited advanced QI/PS programs, yet offers useful considerations for evaluating any advanced medical education program.


Assuntos
Avaliação Educacional/métodos , Internato e Residência , Segurança do Paciente , Garantia da Qualidade dos Cuidados de Saúde , Melhoria de Qualidade , United States Department of Veterans Affairs/organização & administração , Humanos , Capacitação em Serviço/métodos , Capacitação em Serviço/organização & administração , Internato e Residência/métodos , Internato e Residência/organização & administração , Avaliação das Necessidades , Garantia da Qualidade dos Cuidados de Saúde/métodos , Garantia da Qualidade dos Cuidados de Saúde/organização & administração , Melhoria de Qualidade/organização & administração , Indicadores de Qualidade em Assistência à Saúde , Estados Unidos , United States Department of Veterans Affairs/normas
19.
Child Maltreat ; 24(1): 86-97, 2019 02.
Artigo em Inglês | MEDLINE | ID: mdl-30200774

RESUMO

Trauma-informed care (TIC) initiatives in state child welfare agencies are receiving more attention, but little empirical evidence exists as to their efficacy. The purpose of this study was to assess changes in self-reported practices and perceptions of child welfare staff involved in a multifaceted, statewide TIC intervention. Ten child welfare offices were matched and randomized to an early or delayed cohort. Staff were surveyed at Time 1 prior to any intervention, Time 2 postintervention for Cohort 1, and Time 3 postintervention for Cohort 2. The survey covered six domains: trauma screening, case planning, mental health and family involvement, progress monitoring, collaboration, and perceptions of the state's overall system performance. Linear mixed modeling assessed the effect of the intervention. Cohort by time interaction was significant for three intervention targets. We demonstrate, using a rigorous study design, the mixed results of a multimodal intervention to improve trauma-informed attitudes, practices, and system performance. TIC initiatives must account for complex, dynamic contextual factors.


Assuntos
Maus-Tratos Infantis/diagnóstico , Serviços de Proteção Infantil/educação , Proteção da Criança , Conhecimentos, Atitudes e Prática em Saúde , Adulto , Criança , Maus-Tratos Infantis/psicologia , Estudos de Coortes , Estudos Cross-Over , Humanos
20.
J Gen Intern Med ; 33(11): 1905-1912, 2018 11.
Artigo em Inglês | MEDLINE | ID: mdl-30066118

RESUMO

BACKGROUND: Decades of persuasive messages have reinforced the importance of traditional screening mammography at regular intervals. A potential new paradigm, risk-based screening, adjusts mammography frequency based on a woman's estimated breast cancer risk in order to maximize mortality reduction while minimizing false positives and overdiagnosis. Women's views of risk-based screening are unknown. OBJECTIVE: To explore women's views and personal acceptability of a potential risk-based mammography screening paradigm. DESIGN: Four semi-structured focus group discussions about screening mammography and surveys before provision of information about risk-based screening. We analyzed coded focus group transcripts using a mixed deductive (content analysis) and inductive (grounded theory) approach. PARTICIPANTS: Convenience sample of 29 women (40-74 years old) with no personal history of breast cancer recruited by print and online media in New Hampshire and Vermont. RESULTS: Twenty-seven out of 29 women reported having undergone mammography screening. All participants were white and most were highly educated. Some women accepted the idea that early cancer detection with traditional screening was beneficial-although many also reported hearing inconsistent recommendations from clinicians and mixed messages from media reports about mammography. Some women were familiar with a risk-based screening paradigm (primarily related to cervical cancer, n = 8) and thought matching screening mammography frequency to personal risk made sense (n = 8). Personal acceptability of risk-based screening was mixed. Some believed risk-based screening could reduce the harms of false positives and overdiagnosis (n = 7). Others thought screening less often might result in missing a dangerous diagnosis (n = 14). Many (n = 18) expressed concerns about the feasibility of risk-based screening and questioned whether breast cancer risk estimates could be accurate. Some suspected that risk-based mammography was motivated by a desire to save money (n = 6). CONCLUSION: Some women thought risk-based screening made sense. Willingness to abandon traditional screening for the new paradigm was mixed. Broad acceptability of risk-based screening will require clearer communication about its rationale and feasibility and consistent messages from the health care team.


Assuntos
Neoplasias da Mama/psicologia , Detecção Precoce de Câncer/psicologia , Grupos Focais , Mamografia/psicologia , Uso Excessivo dos Serviços de Saúde/prevenção & controle , Pesquisa Qualitativa , Adulto , Idoso , Neoplasias da Mama/diagnóstico por imagem , Detecção Precoce de Câncer/métodos , Reações Falso-Positivas , Feminino , Grupos Focais/métodos , Humanos , Mamografia/métodos , Pessoa de Meia-Idade
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