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1.
CA Cancer J Clin ; 69(1): 35-49, 2019 01.
Artigo em Inglês | MEDLINE | ID: mdl-30376182

RESUMO

Cancer care delivery is being shaped by growing numbers of cancer survivors coupled with provider shortages, rising costs of primary treatment and follow-up care, significant survivorship health disparities, increased reliance on informal caregivers, and the transition to value-based care. These factors create a compelling need to provide coordinated, comprehensive, personalized care for cancer survivors in ways that meet survivors' and caregivers' unique needs while minimizing the impact of provider shortages and controlling costs for health care systems, survivors, and families. The authors reviewed research identifying and addressing the needs of cancer survivors and caregivers and used this synthesis to create a set of critical priorities for care delivery, research, education, and policy to equitably improve survivor outcomes and support caregivers. Efforts are needed in 3 priority areas: 1) implementing routine assessment of survivors' needs and functioning and caregivers' needs; 2) facilitating personalized, tailored, information and referrals from diagnosis onward for both survivors and caregivers, shifting services from point of care to point of need wherever possible; and 3) disseminating and supporting the implementation of new care methods and interventions.


Assuntos
Sobreviventes de Câncer , Cuidadores , Política de Saúde , Acessibilidade aos Serviços de Saúde/organização & administração , Disparidades em Assistência à Saúde/organização & administração , Melhoria de Qualidade/organização & administração , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Pesquisa Biomédica/métodos , Pesquisa Biomédica/organização & administração , Sobreviventes de Câncer/estatística & dados numéricos , Criança , Pré-Escolar , Medicina Baseada em Evidências/métodos , Medicina Baseada em Evidências/organização & administração , Feminino , Disparidades nos Níveis de Saúde , Humanos , Lactente , Recém-Nascido , Masculino , Área Carente de Assistência Médica , Pessoa de Meia-Idade , Avaliação das Necessidades , Avaliação de Processos e Resultados em Cuidados de Saúde , Assistência Centrada no Paciente/métodos , Assistência Centrada no Paciente/organização & administração , Encaminhamento e Consulta/organização & administração , Apoio Social , Estados Unidos , Adulto Jovem
2.
J Gen Intern Med ; 39(8): 1349-1359, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38424344

RESUMO

BACKGROUND: Women Veterans' numerical minority, high rates of military sexual trauma, and gender-specific healthcare needs have complicated implementation of comprehensive primary care (PC) under VA's patient-centered medical home model, Patient Aligned Care Teams (PACT). OBJECTIVE: We deployed an evidence-based quality improvement (EBQI) approach to tailor PACT to meet women Veterans' needs and studied its effects on women's health (WH) care readiness, team-based care, and burnout. DESIGN: We evaluated EBQI effectiveness in a cluster randomized trial with unbalanced random allocation of 12 VAMCs (8 EBQI vs. 4 control). Clinicians/staff completed web-based surveys at baseline (2014) and 24 months (2016). We adjusted for individual-level covariates (e.g., years at VA) and weighted for non-response in difference-in-difference analyses for readiness and team-based care overall and by teamlet type (mixed-gender PC-PACTs vs. women-only WH-PACTs), as well as post-only burnout comparisons. PARTICIPANTS: We surveyed all clinicians/staff in general PC and WH clinics. INTERVENTION: EBQI involved structured engagement of multilevel, multidisciplinary stakeholders at network, VAMC, and clinic levels toward network-specific QI roadmaps. The research team provided QI training, formative feedback, and external practice facilitation, and support for cross-site collaboration calls to VAMC-level QI teams, which developed roadmap-linked projects adapted to local contexts. MAIN MEASURES: WH care readiness (confidence providing WH care, self-efficacy implementing PACT for women, barriers to providing care for women, gender sensitivity); team-based care (change-readiness, communication, decision-making, PACT-related QI, functioning); burnout. KEY RESULTS: Overall, EBQI had mixed effects which varied substantively by type of PACT. In PC-PACTs, EBQI increased self-efficacy implementing PACT for women and gender sensitivity, even as it lowered confidence. In contrast, in WH-PACTs, EBQI improved change-readiness, team-based communication, and functioning, and was associated with lower burnout. CONCLUSIONS: EBQI effectiveness varied, with WH-PACTs experiencing broader benefits and PC-PACTs improving basic WH care readiness. Lower confidence delivering WH care by PC-PACT members warrants further study. TRIAL REGISTRATION: The data in this paper represent results from a cluster randomized controlled trial registered in ClinicalTrials.gov (NCT02039856).


Assuntos
Assistência Centrada no Paciente , Melhoria de Qualidade , United States Department of Veterans Affairs , Veteranos , Humanos , Feminino , Assistência Centrada no Paciente/organização & administração , Melhoria de Qualidade/organização & administração , Veteranos/psicologia , United States Department of Veterans Affairs/organização & administração , Estados Unidos , Saúde da Mulher , Equipe de Assistência ao Paciente/organização & administração , Atenção Primária à Saúde/organização & administração , Atenção Primária à Saúde/normas , Adulto , Pessoa de Meia-Idade
3.
Support Care Cancer ; 32(5): 313, 2024 Apr 29.
Artigo em Inglês | MEDLINE | ID: mdl-38679639

RESUMO

PURPOSE: People with advanced or metastatic cancer and their caregivers may have different care goals and face unique challenges compared to those with early-stage disease or those nearing the end-of-life. These MASCC-ASCO standards and practice recommendations seek to establish consistent provision of quality survivorship care for people affected by advanced or metastatic cancer. METHODS: An expert panel comprising MASCC and ASCO members was formed. Standards and recommendations relevant to the provision of quality survivorship care for people affected by advanced or metastatic cancer were developed through conducting: (1) a systematic review of unmet supportive care needs; (2) a scoping review of cancer survivorship, supportive care, and palliative care frameworks and guidelines; and (3) an international modified Delphi consensus process. RESULTS: A systematic review involving 81 studies and a scoping review of 17 guidelines and frameworks informed the initial standards and recommendations. Subsequently, 77 experts (including 8 people with lived experience) across 33 countries (33% were low-to-middle resource countries) participated in the Delphi study and achieved ≥ 94.8% agreement for seven standards (1. Person-Centred Care; 2. Coordinated and Integrated Care; 3. Evidence-Based and Comprehensive Care; 4. Evaluated and Communicated Care; 5. Accessible and Equitable Care; 6. Sustainable and Resourced Care; 7. Research and Data-Driven Care) and ≥ 84.2% agreement across 45 practice recommendations. CONCLUSION: Standards of survivorship care for people affected by advanced or metastatic cancer are provided. These MASCC-ASCO standards will support optimization of health outcomes and care experiences by providing guidance to stakeholders in cancer care (healthcare professionals, leaders, and administrators; governments and health ministries; policymakers; advocacy agencies; cancer survivors and caregivers. Practice recommendations may be used to facilitate future research, practice, policy, and advocacy efforts.


Assuntos
Sobreviventes de Câncer , Neoplasias , Cuidados Paliativos , Sobrevivência , Humanos , Técnica Delphi , Metástase Neoplásica , Neoplasias/terapia , Cuidados Paliativos/normas , Cuidados Paliativos/métodos , Assistência Centrada no Paciente/normas , Assistência Centrada no Paciente/organização & administração , Guias de Prática Clínica como Assunto , Qualidade da Assistência à Saúde/normas
4.
Support Care Cancer ; 32(6): 397, 2024 May 31.
Artigo em Inglês | MEDLINE | ID: mdl-38819504

RESUMO

PURPOSE: This study aimed to develop a patient-centered survivorship care plan (SCP) for US military Veteran bladder cancer (BC) survivors in accordance with the National Academy of Medicine recommendation that survivors receive an SCP at treatment completion. BC, which differentially impacts older men, is a costly and highly recurrent cancer associated with invasive procedures and long-term surveillance. Veteran BC survivors may face challenges navigating the patient-to-survivor transition due to their age and comorbidities. METHODS: We conducted 20 one-on-one qualitative interviews and 2 focus groups with Veteran BC survivors to understand their preferences for information and support to inform SCP development. Data were analyzed using rapid analysis. RESULTS: Participants voiced concerns about BC's impact on their psychosocial functioning and quality of life. They suggested information on BC recurrences, recommended surveillance schedules, long-term side effects and healthy living, and how and when to seek help if a medical problem arises should be included on the SCP to help manage expectations and access key resources during survivorship. Although participants had varying needs, many recommended including information on supportive resources (e.g., support groups, peer support programs) to manage cancer-related anxiety. Participants also suggested including Veteran-centered information (e.g., Veterans' BC risk factors). CONCLUSION: We developed an SCP to help Veteran BC survivors navigate the transition from patient to survivor. Adapting an SCP to address specific needs of the Veteran population was an important step in supporting Veteran BC survivors. Future research should evaluate the potential effectiveness of this SCP at improving Veterans' health outcomes and healthcare experiences.


Assuntos
Sobreviventes de Câncer , Grupos Focais , Assistência Centrada no Paciente , Pesquisa Qualitativa , Sobrevivência , Neoplasias da Bexiga Urinária , Veteranos , Humanos , Neoplasias da Bexiga Urinária/terapia , Neoplasias da Bexiga Urinária/psicologia , Masculino , Idoso , Sobreviventes de Câncer/psicologia , Pessoa de Meia-Idade , Assistência Centrada no Paciente/organização & administração , Veteranos/psicologia , Planejamento de Assistência ao Paciente/organização & administração , Feminino , Qualidade de Vida , Idoso de 80 Anos ou mais , Entrevistas como Assunto , Estados Unidos
5.
BMC Health Serv Res ; 24(1): 680, 2024 May 29.
Artigo em Inglês | MEDLINE | ID: mdl-38811995

RESUMO

BACKGROUND: Person-centred planning refers to a model of care in which programs and services are developed in collaboration with persons receiving care (i.e., persons-supported) and tailored to their unique needs and goals. In recent decades, governments around the world have enacted policies requiring community-care agencies to adopt an individualized or person-centred approach to service delivery. Although regional mandates provide a framework for directing care, it is unclear how this guidance is implemented in practice given the diversity and range of organizations within the sector. This study aims to address a gap in the literature by describing how person-centred care plans are implemented in community-care organizations. METHODS: We conducted semi-structured interviews with administrators from community-care organizations in Ontario, Canada. We asked participants about their organization's approach to developing and updating person-centred care plans, including relevant supports and barriers. We analyzed the data thematically using a pragmatic, qualitative, descriptive approach. RESULTS: We interviewed administrators from 12 community-care organizations. We identified three overarching categories or processes related to organizational characteristics and person-centred planning: (1) organizational context, (2) organizational culture, and (3) the design and delivery of person-centred care plans. The context of care and the types of services offered by the organization were directly informed by the needs and characteristics of the population served. The culture of the organization (e.g., their values, attitudes and beliefs surrounding persons-supported) was a key influence in the development and implementation of person-centred care plans. Participants described the person-centred planning process as being iterative and collaborative, involving initial and continued consultations with persons-supported and their close family and friends, while also citing implementation challenges in cases where persons had difficulty communicating, and in cases where they preferred not to have a formal plan in place. CONCLUSIONS: The person-centred planning process is largely informed by organizational context and culture. There are ongoing challenges in the implementation of person-centred care plans, highlighting a gap between policy and practice and suggesting a need for comprehensive guidance and enhanced adaptability in current regulations. Policymakers, administrators, and service providers can leverage these insights to refine policies, advocating for inclusive, flexible approaches that better align with diverse community needs.


Assuntos
Assistência Centrada no Paciente , Pesquisa Qualitativa , Ontário , Assistência Centrada no Paciente/organização & administração , Humanos , Entrevistas como Assunto , Serviços de Saúde Comunitária/organização & administração , Cultura Organizacional , Planejamento de Assistência ao Paciente/organização & administração , Feminino
6.
BMC Health Serv Res ; 24(1): 540, 2024 Apr 27.
Artigo em Inglês | MEDLINE | ID: mdl-38678236

RESUMO

BACKGROUND: The primary healthcare system in Pakistan focuses on providing episodic, disease-based care. Health care for low-middle income communities is largely through a fee-for-service model that ignores preventive and health-promotive services. The growing burden of cardiovascular illnesses requires restructuring of the primary health care system allowing a community-to-clinic model of care to improve patient- and community-level health indicators. METHODS: We propose a model that integrates a Patient-Centered Medical Home (PCMH) with a Community-Based Health Information System (CBHIS) using hypertension (HTN) as an example. This protocol describes the integration and evaluation of the PCMH-CBHIS infrastructure through a population-based, observational, longitudinal study in a low-middle income, urban community in Pakistan. Participants are being enrolled in CBHIS and will be followed longitudinally over two years for HTN outcomes. A mixed-methods approach is adopted to evaluate the process of integrating PCMH with CBHIS. This involves building partnerships with the community through formal and informal meetings, focus group discussions, and a household health assessment survey (HAS). Community members identified with HTN are linked to PCMH for disease management. A customized electronic medical record system links community-level data with patient-level data to track changes in disease burden. The RE-AIM evaluation framework will be used to monitor community and individual-level metrics to guide implementation assessment, the potential for generalization, and the effectiveness of the PCMH in improving HTN-related health outcomes. Ethical clearance has been obtained from the Ethics Review Committee at Aga Khan University (2022-6723-20985). DISCUSSION: This study will evaluate the value of restructuring the primary care health system by ensuring systematic community engagement and measurement of health indicators at the patient- and community-level. While HTN is being used as a prototype to generate evidence for the effectiveness of this model, findings from this initiative will be leveraged towards strengthening the management of other acute and chronic conditions in primary care settings. If effective, the model can be used in Pakistan and other LMICs and resource-limited settings.


Assuntos
Hipertensão , Assistência Centrada no Paciente , Feminino , Humanos , Masculino , Serviços de Saúde Comunitária/organização & administração , Hipertensão/terapia , Estudos Longitudinais , Paquistão , Assistência Centrada no Paciente/organização & administração , Atenção Primária à Saúde/organização & administração , Melhoria de Qualidade/organização & administração , Estudos Observacionais como Assunto
7.
BMC Health Serv Res ; 24(1): 746, 2024 Jun 18.
Artigo em Inglês | MEDLINE | ID: mdl-38890705

RESUMO

BACKGROUND: Individuals facing socioeconomic hardship experience higher than average rates of chronic disease, such as diabetes, with less access to evidence-based treatment. One solution to address these inequities is a team-based care (TBC) model, defined as one in which at least two providers work collaboratively with a patient and their caregiver(s) to make healthcare decisions. This paper seeks to describe the implementation of a TBC model within a safety-net healthcare setting and determine the extent to which it can be an effective, patient-centered approach to treating individuals with diabetes. METHODS: Semi-structured interviews were conducted with staff (n = 15) and patients (n = 18). Clinical data were extracted from the electronic medical record of patients (n = 1,599) seen at a safety-net health system in Chicago, Illinois, United States. The mixed methods study was guided by implementation science and participatory research principles. Staff interviews were 60 min and covered patient care activities, work flow, perceived patient experience, and facilitators/barriers to care coordination. Patient interviews were 60 min and covered satisfaction, attitudes about diabetes management, quality of life, and technology. Patient interviews were co-analyzed by research staff and members of a patient advisory committee. Clinical data were collected at an index visit, two years prior and at one-year follow up (n = 1,599). RESULTS: Four themes emerged from the interviews: (1) patients perceived the TBC model to be patient centered and of high quality; (2) technology can be an innovative tool, but barriers exist; (3) diabetes management is a complex process; and (4) staff communication enhances care coordination, but misinterpreting roles reduces care coordination. From pre-enrollment to the follow-up period, we found a statistically significant increase in missed visits, decrease in hemoglobin A1c (HbA1c), decrease in body mass index, and decrease in the percent of patients with high blood pressure. We found that each medical visit during the follow-up period was associated with an HbA1c decrease of 0.26 points. CONCLUSIONS: A TBC model is a patient-centered approach to providing care to patients with complex health needs, such as diabetes, patients were satisfied with the care they were receiving, and the model was associated with an improvement in clinical outcomes.


Assuntos
Diabetes Mellitus , Equipe de Assistência ao Paciente , Humanos , Equipe de Assistência ao Paciente/organização & administração , Masculino , Feminino , Pessoa de Meia-Idade , Diabetes Mellitus/terapia , Chicago , Assistência Centrada no Paciente/organização & administração , Entrevistas como Assunto , Adulto , Idoso , Pesquisa Qualitativa , Provedores de Redes de Segurança/organização & administração
8.
J Perinat Neonatal Nurs ; 38(2): 221-226, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38758277

RESUMO

AIM: Although infant- and family-centered developmental care (IFCDC) is scientifically grounded and offered in many hospitals to some extent, it has not yet been universally implemented as the standard of care. In this article, we aim to identify barriers to the implementation of IFCDC in Belgian neonatal care from the perspective of neonatal care providers. METHODS: We conducted 8 online focus groups with 40 healthcare providers working in neonatal care services. An inductive thematic analysis was carried out by means of Nvivo. RESULTS: The focus groups revealed barriers related to contextual, hospital, and neonatal unit characteristics. Barriers found in the hospital and neonatal unit were related to financing, staffing, infrastructure, access to knowledge/information and learning climate, leadership engagement, and relative priority of IFCDC. Contextual barriers were related to peer pressure and partnerships, newborn/parent needs and resources, external policy, and budgetary incentives. CONCLUSION: Three main barriers to IFCDC implementation have been identified. Resources (staffing, financing, and infrastructure) must be available and aligned with IFCDC standards, knowledge and information have to be accessible and continuously updated, and hospital management should support IFCDC implementation to create an enabling climate, including compatibility with the existing workflow, learning opportunities, and priority setting.


Assuntos
Grupos Focais , Humanos , Recém-Nascido , Bélgica , Feminino , Masculino , Assistência Centrada no Paciente/organização & administração , Pesquisa Qualitativa , Enfermagem Neonatal/organização & administração , Enfermagem Neonatal/métodos , Enfermagem Neonatal/normas , Desenvolvimento Infantil , Atitude do Pessoal de Saúde , Adulto , Unidades de Terapia Intensiva Neonatal/organização & administração
9.
J Interprof Care ; 38(4): 722-728, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38600788

RESUMO

Authentic patient activities in an interprofessional education (IPE) setting can develop collaborative, practice ready health professionals who have the skills to work within and across teams with patients at the center of their care. In this qualitative study, the student experience of a novel interprofessional case study activity, with lived experience content delivered via an authentic patient video was explored. Transcripts were analyzed using reflexive thematic analysis and identified three major themes: (a) from disease-centered to person-centered care, (b) reflecting on roles in interprofessional collaborative practice, and (c) teamwork and lived experience facilitates learning. When considered within the Interprofessional Education Collaborative (IPEC) framework, the student experience suggested positive change in all four core competencies: interprofessional communication, values and ethics, roles and responsibilities and teamwork. In addition, students highly valued the interprofessional learning experience, and the patient video created a more realistic case study by reducing clinical assumptions. In conclusion, a short, single exposure to a written case followed by an authentic patient video in an IPE setting had an immediate positive impact on entry-level student health professionals. This simple methodology is a viable way of bringing the authentic patient voice into the classroom with additional benefit from the interprofessional format.


Assuntos
Atitude do Pessoal de Saúde , Comportamento Cooperativo , Relações Interprofissionais , Equipe de Assistência ao Paciente , Assistência Centrada no Paciente , Estudantes de Ciências da Saúde , Humanos , Assistência Centrada no Paciente/organização & administração , Estudantes de Ciências da Saúde/psicologia , Equipe de Assistência ao Paciente/organização & administração , Educação Interprofissional/organização & administração , Pesquisa Qualitativa , Comunicação , Gravação em Vídeo , Masculino , Feminino , Papel Profissional
10.
Matern Child Health J ; 27(3): 476-486, 2023 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-36460883

RESUMO

OBJECTIVES: The medical home model is a widely accepted model of team-based primary care. We examined five components of the medical home model in order to better understand their unique contributions to child health outcomes. METHODS: We analyzed data from the 2016-2017 National Survey of Children's Health (NSCH) to assess five key medical home components - usual source of care, personal doctor/nurse, family-centered care, referral access, and coordinated care - and their associations with child outcomes. Health outcomes included emergency department (ED) visits, unmet health care needs, preventive medical visits, preventive dental visits, health status, and oral health status. We used multivariate regression controlling for child characteristics including age, sex, primary household language, race/ethnicity, income, parental education, health insurance coverage, and special healthcare needs. RESULTS: Children who were not white, living in non-English households, with less family income or education, or who were uninsured had lower rates of access to a medical home and its components. A medical home was associated with beneficial child outcomes for all six of the outcomes and the family-centered care component was associated with better results in five outcomes. ED visits were less likely for children who received care coordination (aOR 0.81, CI 0.70-0.94). CONCLUSIONS FOR PRACTICE: Our study highlights the role of key components of the medical home and the importance of access to family-centered health care that provides needed coordination for children. Health care reforms should consider disparities in access to a medical home and specific components and the contributions of each component to provide quality primary care for all children.


Assuntos
Serviços de Saúde da Criança , Acessibilidade aos Serviços de Saúde , Equipe de Assistência ao Paciente , Assistência Centrada no Paciente , Determinantes Sociais da Saúde , Criança , Humanos , Serviços de Saúde da Criança/organização & administração , Acessibilidade aos Serviços de Saúde/organização & administração , Renda , Avaliação de Resultados em Cuidados de Saúde , Assistência Centrada no Paciente/organização & administração , Equipe de Assistência ao Paciente/organização & administração , Pediatria/organização & administração
11.
Eur J Clin Pharmacol ; 78(1): 127-137, 2022 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-34448906

RESUMO

PURPOSE: This study aimed to assess the impact of the patient-centered prescription (PCP) model in medication adherence and effective prescribing in patients with multimorbidity. METHODS: Uncontrolled before-after study in an intermediate care facility in a mixed urban-rural district. Inpatients aged ≥ 65 years with multimorbidity exposed to polypharmacy before hospital admission were consecutively enrolled. Every patient's treatment plan was analyzed through the PCP model, which includes interventions aimed at improving medication adherence. The primary endpoint was the change in the proportion of adherent patients between pre-admission and after discharge for all regularly scheduled long-term medications, using the proportion of days covered (PDC). Secondary endpoints included the change on mean PDC for all long-term medications, number of long-term medications, proportion of patients with hyperpolypharmacy, medication regimen complexity index (MRCI) score, drug burden index (DBI) score, number of potential inappropriate prescribing (PIP), and proportion of patients with ≥ 2 PIPs. RESULTS: Ninety-three non-institutionalized patients were included (mean age 83.0 ± SD 6.1 years). The proportion of adherent patients increased from 22.1 to 51.9% (P < 0.001). Intervention also improved mean PDC [mean difference (95% CI) 10.6 (7.7, 13.5)] and effective prescribing through a reduction on the number of long-term medications [- 1.3 (- 1.7, - 0.9)], proportion of patients exposed to hyperpolypharmacy (- 16.1%, P < 0.001), MRCI score [- 2.2 (- 3.4, - 1.0)], DBI score [- 0.16 (- 1.8, - 1.3)], number of PIPs [- 1.6 (- 1.8, - 1.3)], and proportion of patients with ≥ 2 PIPs (- 53.7%, P < 0.001). CONCLUSION: Studied intervention provides significant effective prescribing and medication adherence enhancements in non-institutionalized older patients with multimorbidity and polypharmacy.


Assuntos
Adesão à Medicação/estatística & dados numéricos , Conduta do Tratamento Medicamentoso/organização & administração , Multimorbidade , Assistência Centrada no Paciente/organização & administração , Polimedicação , Fatores Etários , Idoso , Idoso de 80 Anos ou mais , Feminino , Idoso Fragilizado , Humanos , Masculino , Entrevista Motivacional , Lista de Medicamentos Potencialmente Inapropriados , Fatores Sexuais
12.
Am J Respir Crit Care Med ; 204(2): e3-e23, 2021 07 15.
Artigo em Inglês | MEDLINE | ID: mdl-34283696

RESUMO

Background: In the past two decades, many advances have been made to our understanding of interstitial lung disease (ILD) and the way we approach its treatment. Despite this, many questions remain unanswered, particularly those related to how the disease and its therapies impact outcomes that are most important to patients. There is currently a lack of guidance on how to best define and incorporate these patient-centered outcomes in ILD research. Objectives: To summarize the current state of patient-centered outcomes research in ILD, identify gaps in knowledge and research, and highlight opportunities and methods for future patient-centered research agendas in ILD. Methods: An international interdisciplinary group of experts was assembled. The group identified top patient-centered outcomes in ILD, reviewed available literature for each outcome, highlighted important discoveries and knowledge gaps, and formulated research recommendations. Results: The committee identified seven themes around patient-centered outcomes as the focus of the statement. After a review of the literature and expert committee discussion, we developed 28 research recommendations. Conclusions: Patient-centered outcomes are key to ascertaining whether and how ILD and interventions used to treat it affect the way patients feel and function in their daily lives. Ample opportunities exist to conduct additional work dedicated to elevating and incorporating patient-centered outcomes in ILD research.


Assuntos
Doenças Pulmonares Intersticiais/enfermagem , Pesquisa em Enfermagem/organização & administração , Objetivos Organizacionais , Avaliação de Resultados da Assistência ao Paciente , Satisfação do Paciente , Assistência Centrada no Paciente/organização & administração , Qualidade de Vida/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estados Unidos
13.
Palliat Support Care ; 20(6): 794-800, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-36942585

RESUMO

OBJECTIVES: Improving family-centered outcomes is a priority in oncologic critical care. As part of the Intensive Care Unit (ICU) Patient-Centered Outcomes Research Collaborative, we implemented patient- and family-centered initiatives in a comprehensive cancer center. METHODS: A multidisciplinary team was created to implement the initiatives. We instituted an open visitation policy (OVP) that revamped the use of the two-way communication boards and enhanced the waiting room experience by hosting ICU family-centered events. To assess the initiatives' effects, we carried out pre-intervention (PRE) and post-intervention (POST) family/caregiver and ICU practitioner surveys. RESULTS: A total of 159 (PRE = 79, POST = 80) family members and 147 (PRE = 95, POST = 52) ICU practitioners participated. Regarding the decision-making process, family members felt more included (40.5% vs. 68.8%, p < 0.001) and more supported (29.1% vs. 48.8%, p = 0.011) after the implementation of the initiatives. The caregivers also felt more control over the decision-making process in the POST survey (34.2% vs. 56.3%, p = 0.005). Although 33% of the ICU staff considered OVP was beneficial for the ICU, 41% disagreed and 26% were neutral. Only half of them responded that OVP was beneficial for patients and 63% agreed that OVP was beneficial for families. Half of the practitioners agreed that OVP resulted in additional work for staff. SIGNIFICANCE OF RESULTS: Our project effectively promoted patient- and family-centered care. The families expressed satisfaction with the communication of information and the decision-making process. However, the ICU staff felt that the initiatives increased their work load. Further research is needed to understand whether making this project universal or introducing additional novel practices would significantly benefit patients admitted to the ICU and their family.


Assuntos
Institutos de Câncer , Assistência Integral à Saúde , Unidades de Terapia Intensiva , Neoplasias , Assistência Centrada no Paciente , Relações Profissional-Família , Humanos , Cuidados Críticos/organização & administração , Família/psicologia , Unidades de Terapia Intensiva/organização & administração , Neoplasias/terapia , Institutos de Câncer/organização & administração , Assistência Centrada no Paciente/organização & administração , Melhoria de Qualidade , Masculino , Feminino , Adulto , Pessoa de Meia-Idade
14.
Med Care ; 59(3): 206-212, 2021 03 01.
Artigo em Inglês | MEDLINE | ID: mdl-33480657

RESUMO

BACKGROUND: The patient-centered medical home (PCMH) model has been widely adopted, but the evidence on its effectiveness remains mixed. One potential explanation for these mixed findings is variation in how the model is implemented by practices. OBJECTIVE: To identify the impact of different approaches to PCMH adoption on health care utilization in a long-term, geographically diverse sample of patients. DESIGN: Difference-in-differences evaluation of PCMH impact on cost and utilization. SUBJECTS: A total of 5,314,284 patient-year observations from the HealthCore Integrated Research Database, and 5943 practices which adopted the PCMH model in 14 states between 2011 and 2015. INTERVENTION: PCMH adoption, as defined by the National Committee for Quality Assurance. MEASUREMENTS: Six claims-based utilization measures, plus total health care expenditures. We employ hierarchical clustering to organize practices into groups based on their PCMH capabilities, then use generalized difference-in-differences models with practice or patient fixed effects to estimate the effect of PCMH recognition (overall and separately by the groups identified by the clustering algorithm) on utilization. RESULTS: PCMH adoption was associated with a >8% reduction in total expenditures. We find significant reductions in emergency department utilization and outpatient care, and both lab and imaging services. In our by-group results we find that while the reduction in outpatient care is significant across all 3 groups, the reduction in emergency department utilization is driven entirely by 1 group with enhanced electronic communications. CONCLUSION: The PCMH model has significant impact on patterns of health care utilization, especially when heterogeneity in implementation is accounted for in program evaluation.


Assuntos
Equipe de Assistência ao Paciente/organização & administração , Assistência Centrada no Paciente/organização & administração , Atenção Primária à Saúde/organização & administração , Qualidade da Assistência à Saúde/organização & administração , Feminino , Humanos , Masculino , Inovação Organizacional , Avaliação de Programas e Projetos de Saúde , Estados Unidos
15.
Med Care ; 59(8): 727-735, 2021 08 01.
Artigo em Inglês | MEDLINE | ID: mdl-33900271

RESUMO

BACKGROUND: With human immunodeficiency virus (HIV) now managed as a chronic disease, health care has had to change and expand to include management of other critical comorbidities. We sought to understand how variation in the organization, structure and processes of HIV and comorbidity care, based on patient-centered medical home (PCMH) principles, was related to care quality for Veterans with HIV. RESEARCH DESIGN: Qualitative site visits were conducted at a purposive sample of 8 Department of Veterans Affairs Medical Centers, varying in care quality and outcomes for HIV and common comorbidities. Site visits entailed conduct of patient interviews (n=60); HIV care team interviews (n=60); direct observation of clinic processes and team interactions (n=22); and direct observations of patient-provider clinical encounters (n=45). Data were analyzed using a priori and emergent codes, construction of site syntheses and comparing sites with varying levels of quality. RESULTS: Sites highest and lowest in both HIV and comorbidity care quality demonstrated clear differences in provision of PCMH-principled care. The highest site provided greater team-based, comprehensive, patient-centered, and data-driven care and engaged in continuous improvement. Sites with higher HIV care quality attended more to psychosocial needs. Sites that had consistent processes for comorbidity care, whether in HIV or primary care clinics, had higher quality of comorbidity care. CONCLUSIONS: Provision of high-quality HIV care and high-quality co-morbidity care require different care structures and processes. Provision of both requires a focus on providing care aligned with PCMH principles, integrating psychosocial needs into care, and establishing explicit consistent approaches to comorbidity management.


Assuntos
Comorbidade , Infecções por HIV/terapia , Assistência Centrada no Paciente/organização & administração , Qualidade da Assistência à Saúde/organização & administração , Instituições de Assistência Ambulatorial/normas , Humanos , Equipe de Assistência ao Paciente , Satisfação do Paciente , Assistência Centrada no Paciente/métodos , Pesquisa Qualitativa , Qualidade da Assistência à Saúde/estatística & dados numéricos , Estados Unidos , United States Department of Veterans Affairs , Veteranos
16.
Am J Public Health ; 111(7): 1318-1327, 2021 07.
Artigo em Inglês | MEDLINE | ID: mdl-34111367

RESUMO

Objectives. To evaluate the effectiveness of a novel health care access program (ActionHealthNYC) for uninsured immigrants. Methods. The evaluation was conducted as a randomized controlled trial in New York City from May 2016 through June 2017. Using baseline and follow-up survey data, we assessed health care access, patient experience, and health status. Results. At baseline, 25% of participants had a regular source of care; two thirds had visited a doctor in the past year and reported 2.5 visits in the past 12 months, on average. Nine to 12 months later, intervention participants were 1.2 times more likely to report having a primary care provider (58% vs 46%), were 1.2 times more likely to have seen a doctor in the past 9 months (91% vs 77%), and had 1.5 times more health care visits (4.1 vs 2.9) compared with control participants. Conclusions. ActionHealthNYC increased health care access among program participants. Public Health Implications. State and local policymakers should build on the progress that has been made over the last decade to expand and improve access to health care for uninsured immigrants.


Assuntos
Acessibilidade aos Serviços de Saúde/organização & administração , Pessoas sem Cobertura de Seguro de Saúde , Assistência Centrada no Paciente/organização & administração , Atenção Primária à Saúde/organização & administração , Adolescente , Adulto , Idoso , Emigrantes e Imigrantes/estatística & dados numéricos , Feminino , Nível de Saúde , Humanos , Proficiência Limitada em Inglês , Masculino , Pessoa de Meia-Idade , Cidade de Nova Iorque , Satisfação do Paciente , Assistência Centrada no Paciente/estatística & dados numéricos , Pobreza , Atenção Primária à Saúde/estatística & dados numéricos , Fatores Socioeconômicos , Adulto Jovem
17.
Cancer Control ; 28: 10732748211038734, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34657452

RESUMO

PURPOSE: The current number of breast cancer survivors (BCS) in the United States is approximately 3.8 million, and this number is further expected to increase with improvement in treatments. Survivorship care plans (SCPs) are patient-centered tools that are designed to meet cancer survivors' informational needs about their treatment history, recommended health care, and health maintenance. However, the data on SCP benefits remain uncertain, especially in low-income and racial and ethnic minority cancer survivors. Patient navigation is an effective intervention to improve patient adherence and experience of interdisciplinary breast cancer treatment. OBJECTIVES: This study sought to understand the role of lay patient navigators (LPN) in survivorship care planning for BCS in safety-net settings. METHODS: This study is a mixed methods pilot randomized clinical trial to understand the role of patient navigation in cancer survivorship care planning in a public hospital. We invited BCS who had completed active breast cancer treatment within 5 years. LPNs discussed survivorship care planning and survivorship care-related issues with BCS in the intervention arm over a 6-month intervention period and accompanied patients to their primary care appointment. LPNs also encouraged survivors to discuss health care issues with oncology and primary care providers. The primary objective was to assess BCS' health-related quality of life (HRQOL). The secondary objectives were self-efficacy and implementation. We assessed implementation with 45-60-min semi-structured interviews with 15 BCS recruited from the intervention arm and 60-min focus groups with the oncologists and separately with LPNs. RESULTS: We enrolled 40 patients, 20 randomized to usual care and 20 randomized to LPN navigation. We did not find a statistically significant difference between the two arms in HRQOL. There was also no difference in self-efficacy between the two arms. Qualitative analysis identified implementation barriers to intervention that may have contributed to less effective intervention. IMPLICATIONS FOR CANCER SURVIVORS: Future survivorship care planning interventions need to consider: Cancer survivors' needs and preferences, the need for dedicated resources, and the role of electronic health records in survivorship care plan delivery.


Assuntos
Neoplasias da Mama/terapia , Sobreviventes de Câncer , Minorias Étnicas e Raciais , Assistência Centrada no Paciente/organização & administração , Provedores de Redes de Segurança/organização & administração , Sobrevivência , Feminino , Nível de Saúde , Humanos , Saúde Mental , Navegação de Pacientes/organização & administração , Desempenho Físico Funcional , Pobreza , Qualidade de Vida , Participação Social , Fatores Sociodemográficos , Estados Unidos
18.
Cancer Control ; 28: 10732748211011957, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34689577

RESUMO

INTRODUCTION: Understanding key elements of the survivorship care planning process, such as patient-centered communication (PCC) and health self-efficacy, are critical for delivering patient-centered survivorship care to cancer survivors with multiple chronic conditions ("complex cancer survivors"). Building upon our team's recent research efforts to examine the survivorship care planning process from a patient-centered lens, this exploratory study leveraged an ongoing quasi-experimental trial to elucidate the experience of complex cancer survivors with survivorship care planning and post-treatment management. METHODS: We conducted a hypothesis-generating thematic content analysis on 8 interview transcripts. RESULTS: Survivors reported positive experiences communicating with their oncology care team but the presence of multiple chronic conditions in addition to cancer creates additional barriers to patient-centered survivorship care. CONCLUSION: These findings support the need for further in-depth research aimed at improving PCC across all care teams and enabling self-management by delivering more personalized survivorship care planning that aligns with survivor's needs, values, and preferences.


Assuntos
Neoplasias da Mama/terapia , Sobreviventes de Câncer , Assistência Centrada no Paciente/organização & administração , Sobrevivência , Idoso , Comunicação , Comorbidade , Feminino , Comportamentos Relacionados com a Saúde , Nível de Saúde , Humanos , Entrevistas como Assunto , Saúde Mental , Pessoa de Meia-Idade , Navegação de Pacientes/organização & administração , Satisfação do Paciente , Pesquisa Qualitativa , Qualidade de Vida , Autoeficácia , Participação Social , Apoio Social , Fatores Sociodemográficos , Estados Unidos
19.
J Surg Res ; 259: 387-392, 2021 03.
Artigo em Inglês | MEDLINE | ID: mdl-33070993

RESUMO

BACKGROUND: Although obtaining preoperative procedural consent is required to meet legal and ethical obligations, consent is often relegated to a unidirectional conversation between surgeons and patients. In contrast, shared decision-making (SDM) is a collaborative dialog that elicits patient preferences. Despite emerging interest in SDM, there is a paucity of literature on its application to ventral incisional hernia repair (VIHR). The various surgical techniques and mesh types available, the potential impact on functional outcomes and quality of life, the largely elective nature of the operation, and the significant risk of perioperative patient complications render VIHR an ideal field for SDM implementation. METHODS: The authors reviewed the current literature and drew on their own practice experience to describe evidence-based practical guidelines for implementing the SDM into VIHR care. RESULTS: We summarized the evidence basis for SDM in surgery and discussed how this model can be applied to VIHR given the multiple, complex factors that influence surgical decision-making. We outlined an example of using an SDM framework, "SHARE," with a patient with a large, recurrent ventral hernia. CONCLUSIONS: SDM has the potential to improve patient-centered and preference-concordant care among individuals being considered for VIHR to ensure that treatment interventions meet a patient's goals, rather than solely treating the underlying disease process.


Assuntos
Tomada de Decisão Compartilhada , Hérnia Ventral/cirurgia , Herniorrafia/métodos , Hérnia Incisional/cirurgia , Complicações Pós-Operatórias/prevenção & controle , Comunicação , Medicina Baseada em Evidências/métodos , Medicina Baseada em Evidências/organização & administração , Medicina Baseada em Evidências/normas , Implementação de Plano de Saúde , Herniorrafia/efeitos adversos , Herniorrafia/normas , Humanos , Participação do Paciente , Preferência do Paciente , Assistência Centrada no Paciente/métodos , Assistência Centrada no Paciente/organização & administração , Assistência Centrada no Paciente/normas , Relações Médico-Paciente , Complicações Pós-Operatórias/epidemiologia , Complicações Pós-Operatórias/etiologia , Guias de Prática Clínica como Assunto , Qualidade de Vida , Recidiva
20.
Health Qual Life Outcomes ; 19(1): 133, 2021 Apr 26.
Artigo em Inglês | MEDLINE | ID: mdl-33902607

RESUMO

BACKGROUND: The use of Patient Reported Outcome Measures (PROMS) in clinical practice has the potential to promote patient-centred care and improve patients' quality of life. Individualized PROMs may be particularly helpful in identifying, prioritizing and monitoring health problems of patients with multimorbidity. We aimed to develop an intervention centred around PROMs feedback as part of Primary Care annual reviews for patients with multimorbidity and evaluate its feasibility and acceptability. METHODS: We developed a nurse-oriented intervention including (a) training of nurses on PROMs; (b) administration to patients with multimorbidity of individualized and standardized PROMS; and (c) feedback to both patients and nurses of PROMs scores and interpretation guidance. We then tailored the intervention to patients with two or more highly prevalent conditions (asthma, COPD, diabetes, heart failure, depression, and hip/knee osteoarthritis) and designed a non-controlled feasibility and acceptability evaluation in a convenience sample of primary care practices (5). PROMs were administered and scores fed back immediately ahead of scheduled annual reviews with nurses. Patients and nurses rated the acceptability of the intervention using with a brief survey including optional free comments. Thematic analysis of qualitative interviews with a sample of participating patients (10) and nurses (4) and of survey free comments was conducted for further in-depth evaluation of acceptability. Feasibility was estimated based on rates of participation and completion. RESULTS: Out of 68 recruited patients (mean age 70; 47% female), 68 completed the PROMs (100%), received feedback (100%) and confirmed nurse awareness of their scores (100%). Most patients (83%) "agreed"/"strongly agreed" that the PROMs feedback had been useful, a view supported by nurses in 89% of reviews. Thematic analysis of rich qualitative data on PROMS administration, feedback and role in annual reviews indicated that both patients and nurses perceived the intervention as acceptable and promising, emphasizing its comprehensiveness and patient-centredness. CONCLUSIONS: We have developed and tested an intervention focusing on routine PROM assessment of patients with multimorbidity in Primary Care. Preliminary findings support its feasibility and a high degree of acceptability from both patients and nurses. The next step is to conduct a full-scale trial for evaluating the effectiveness of the proposed intervention.


Assuntos
Multimorbidade , Medidas de Resultados Relatados pelo Paciente , Padrões de Prática em Enfermagem , Atenção Primária à Saúde/organização & administração , Idoso , Estudos de Viabilidade , Feminino , Humanos , Masculino , Assistência Centrada no Paciente/organização & administração , Pesquisa Qualitativa , Qualidade de Vida
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