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1.
J Clin Epidemiol ; 173: 111423, 2024 Jun 14.
Artigo em Inglês | MEDLINE | ID: mdl-38880435

RESUMO

BACKGROUND AND OBJECTIVE: Long COVID (LC) refers to persistent symptoms after acute COVID-19 infection, which may persist for months or years. LC affects millions of people globally, with substantial impacts on quality of life, employment, and social participation. Ensuring access to effective, patient-centered care for LC demands evidence, grounded in inclusive representation of those affected by the condition. Yet survey studies frequently under-represent people with the most disabling disease presentations and racially and socioeconomically marginalized groups. We aimed to describe a patient-engaged approach to developing a survey to inform public LC health care and to assess its implementation in terms of enabling participation by diverse LC patients in Brazil. METHODS: Survey development was iterative, achieved through an interdisciplinary collaboration among researchers including people living with LC, and grounded in 3 guiding principles: (1) evidence-based; (2) inclusive, intersectional, and patient-centered understanding of chronic illness and research participation; and (3) sensitivity to the context of health-care access. RESULTS: The product of our collaboration was a longitudinal survey using a questionnaire assessing: LC symptoms; their clinical and functional evolution; and impacts on quality of life, household income, health service access, utilization, and out-of-pocket expenses. We illustrate how we operationalized our 3 principles through survey content, instrument design, and administration. Six hundred fifty-one participants with diverse LC symptoms, demography, and socioeconomic status completed the survey. We successfully included participants experiencing disabling symptoms, Black and mixed race participants, and those with lower education and income. CONCLUSION: By centering patient experience, our novel, principles-based approach succeeded in promoting equity, diversity, and inclusion in LC survey research. These principles guiding patient-engaged collaboration have broad transferability. We encourage survey researchers working on chronic illness and in other contexts of marginalization and inequality to adopt them.

2.
Med Care Res Rev ; 79(4): 562-575, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-34253081

RESUMO

Large-scale (e.g., national) programs could strengthen safety culture, which is foundational to patient safety, yet we know little about how to optimize this potential. In 2013, Brazil's Ministry of Health launched the National Patient Safety Program, involving hospital-level safety teams and targeted safety protocols. We conducted in-depth qualitative case studies of National Patient Safety Program implementation in two hospitals, with different readiness, to understand how program implementation affected enabling, enacting, and elaborating processes that produce and sustain safety culture. For both hospitals, external mandates were insufficient for enabling hospital-level action. Internal enabling failures (e.g., little safety-relevant senior leadership) hindered enactment (e.g., safety teams unable to institute plans). Limited enactment and weak elaboration processes (e.g., bureaucratic monitoring) failed to institutionalize protocol use and undermined safety culture. Optimizing the safety culture impact of large-scale programs requires effective multi-level enabling and capitalizing on the productive potential of interacting national- and local-level influences.


Assuntos
Segurança do Paciente , Gestão da Segurança , Brasil , Hospitais Públicos , Humanos , Pesquisa Qualitativa
3.
Med Care ; 59(3): 195-201, 2021 03 01.
Artigo em Inglês | MEDLINE | ID: mdl-33273291

RESUMO

BACKGROUND: Health insurance design can influence the extent to which clinical care is well-coordinated. Through alternative payment models, Medicare Advantage (MA) and Accountable Care Organizations (ACOs) have the potential to improve integration relative to traditional fee-for-service (FFS) Medicare. OBJECTIVE: To characterize patient experiences of integrated care within Medicare and identify whether MA or ACO beneficiaries perceive greater integration than FFS beneficiaries. DESIGN: Retrospective cross-sectional analysis of the 2015 Medicare Current Beneficiary Survey. SUBJECTS: Nationally representative sample of 11,978 Medicare beneficiaries. MEASURES: Main outcomes included 8 previously derived domains of patient-perceived integrated care (PPIC), measured on a scale of 1-4. RESULTS: The final sample was 55% female with a mean (SD) age of 71.1 (11.3). In unadjusted analyses, we observed considerable variation across PPIC domains in the full sample, but little variation across subsamples defined by coverage type within a given PPIC domain. In linear models adjusting for a rich set of patient characteristics, we observe no significant benefits of ACOs nor MA relative to FFS, a finding which is robust to alternative specifications and adjustment for multiple comparisons. We similarly observed no benefits in subgroup analyses restricted to states with relatively high market penetration of ACOs or MA. CONCLUSIONS: Despite characteristics of ACOs and MA that theoretically promote integrated care, we find that PPIC is largely similar across coverage types in Medicare.


Assuntos
Organizações de Assistência Responsáveis/economia , Planos de Pagamento por Serviço Prestado/economia , Medicare/economia , Assistência ao Paciente/economia , Organizações de Assistência Responsáveis/estatística & dados numéricos , Idoso , Estudos Transversais , Planos de Pagamento por Serviço Prestado/estatística & dados numéricos , Feminino , Humanos , Masculino , Medicare/estatística & dados numéricos , Avaliação de Resultados em Cuidados de Saúde , Assistência ao Paciente/estatística & dados numéricos , Estados Unidos
4.
J Pediatr ; 213: 149-154, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-31253410

RESUMO

OBJECTIVES: To convey advice from families whose children recently underwent spinal fusion to families whose children are under consideration for initial spinal fusion for neuromuscular scoliosis and to providers who counsel families on this decision. STUDY DESIGN: We interviewed 18 families of children who underwent spinal fusion between August 2017 and January 2019 at a freestanding children's hospital. We conducted phone interviews a median of 65 (IQR 51-77) days after surgery. We audio recorded, transcribed, and coded (line-by-line) interviews using grounded theory by 2 independent reviewers, and discussed among investigators to induce themes associated with surgical decision making and preparation. RESULTS: Six themes emerged about decision making and preparation for spinal fusion: (1) simplify risks and benefits; it is easy to get lost in the details; (2) families prolonging the decision whether or not to pursue spinal fusion surgery may not benefit the child; (3) anticipate anxiety and fear when making a decision about spinal fusion; (4) realize that your child might experience a large amount of pain; (5) anticipate a long recovery and healing process after spinal fusion; and (6) be engaged and advocate for your child throughout the perioperative spinal fusion process. CONCLUSIONS: Parents of children who had recently undergone spinal fusion had strong perceptions about what information to convey to families considering surgery, which may improve communication between future parents and physicians. Further investigation is needed to assess how best to incorporate the wisdom and experiences of parent peers into shared decision making and preparation for spinal fusion in children with neuromuscular scoliosis.


Assuntos
Tomada de Decisões , Pais , Grupo Associado , Escoliose/cirurgia , Fusão Vertebral/psicologia , Adolescente , Ansiedade , Criança , Comunicação , Família , Feminino , Teoria Fundamentada , Humanos , Masculino , Período Pré-Operatório , Pesquisa Qualitativa , Risco , Apoio Social
5.
J Bone Joint Surg Am ; 97(11): 944-9, 2015 Jun 03.
Artigo em Inglês | MEDLINE | ID: mdl-26041857

RESUMO

BACKGROUND: Few studies have analyzed the tangible impact of global, philanthropic medical missions. We used qualitative methods to analyze the work of one such mission, Operation Walk Boston, which has made yearly trips to a Dominican Republic hospital since 2008. METHODS: We interviewed twenty-one American and Dominican participants of the Operation Walk Boston team to investigate how the program led to changes at the host Dominican hospital and how the experience caused both mission protocols and U.S. practices to change. Transcripts were analyzed with the use of content analysis. RESULTS: Participants noted that Operation Walk Boston's technical knowledge transfer and managerial examples led to sustainable changes at the Dominican hospital. Additionally, participants observed an evolution in nursing culture, as the program inspired greater independence in decision-making. Participants also identified barriers such as language and organizational hierarchy that may limit bidirectional knowledge transfer. U.S. participants noted that their practices at home changed as a result of better appreciation for different providers' roles and for managing cost in a resource-constrained environment. CONCLUSIONS: Operation Walk Boston catalyzed sustainable changes in the Dominican hospital. Cultural norms and organizational structure are important determinants of program sustainability.


Assuntos
Missões Médicas/normas , Avaliação de Programas e Projetos de Saúde/normas , Artroplastia de Quadril/normas , Artroplastia do Joelho/normas , Boston , Competência Clínica/normas , República Dominicana , Troca de Informação em Saúde/normas , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Manejo da Dor/normas , Segurança do Paciente , Padrões de Prática Médica/normas , Melhoria de Qualidade , Qualidade da Assistência à Saúde , Populações Vulneráveis
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