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1.
Am J Med Qual ; 39(3): 123-130, 2024.
Article En | MEDLINE | ID: mdl-38713600

Current maternal care recommendations in the United States focus on monitoring fetal development, management of pregnancy complications, and screening for behavioral health concerns. Often missing from these recommendations is support for patients experiencing socioeconomic or behavioral health challenges during pregnancy. A Pregnancy Medical Home (PMH) is a multidisciplinary maternal health care team with nurse navigators serving as patient advocates to improve the quality of care a patient receives and health outcomes for both mother and infant. Using bivariate comparisons between PMH patients and reference groups, as well as interviews with project team members and PMH graduates, this evaluation assessed the impact of a PMH at an academic medical university on patient care and birth outcomes. This PMH increased depression screenings during pregnancy and increased referrals to behavioral health care. This evaluation did not find improvements in maternal or infant birth outcomes. Interviews found notable successes and areas for program enhancement.


Maternal Health Services , Patient-Centered Care , Quality Improvement , Humans , Pregnancy , Female , Patient-Centered Care/organization & administration , Quality Improvement/organization & administration , Maternal Health Services/standards , Maternal Health Services/organization & administration , Adult , Quality of Health Care/organization & administration , Pregnancy Outcome , United States , Patient Care Team/organization & administration , Pregnancy Complications/therapy
2.
Support Care Cancer ; 32(5): 313, 2024 Apr 29.
Article En | MEDLINE | ID: mdl-38679639

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.


Cancer Survivors , Delphi Technique , Neoplasms , Palliative Care , Survivorship , Humans , Neoplasms/therapy , Palliative Care/standards , Palliative Care/methods , Practice Guidelines as Topic , Patient-Centered Care/standards , Patient-Centered Care/organization & administration , Neoplasm Metastasis , Quality of Health Care/standards
3.
J Health Care Poor Underserved ; 35(1): 299-315, 2024.
Article En | MEDLINE | ID: mdl-38661872

Children in immigrant families (CIF) constitute 25% of all children in the United States. Known barriers to accessing and navigating the health care system for immigrants (i.e., poverty, fear, limited English proficiency, lack of insurance) lead to decreased medical home establishment among CIF, although the ways in which these obstacles affect medical home access are less studied. With a focus on Congolese, Afghan, Syrian/Iraqi, and Central American immigrants, key informant interviews and focus groups were conducted to identify mothers' perceptions of and experiences with pediatric primary health care. Five common themes emerged: mothers' critical role in children's health, uniqueness of the U.S. health care system, logistical challenges, influence of prior clinical experiences, and importance of culturally appropriate communication. Few, but distinct, differences among the groups revealed specific obstacles for individual populations. Improving rates of medical home use among CIF requires targeted, immigrant-informed approaches that involve population outreach as well as systems-level changes.


Emigrants and Immigrants , Focus Groups , Mothers , Primary Health Care , Humans , Emigrants and Immigrants/psychology , Female , Mothers/psychology , Adult , Child , United States , Health Services Accessibility , Patient-Centered Care/organization & administration , Child Health Services/organization & administration , Qualitative Research
4.
J Health Care Poor Underserved ; 35(1): 225-245, 2024.
Article En | MEDLINE | ID: mdl-38661868

Gender affirmation is standard medical care, and community input is an essential component of patient-centered care. This study shares how our organization assessed patients' perceptions of health care organizations that provide gender-affirming care. Building on qualitative interview data, we distributed an online survey via a lesbian-gaybisexual-transgender-queer research firm. The survey was completed by 314 transgender individuals residing in 37 U.S. states and territories. Most respondents (69%) reported negative experiences seeking health care. Patients would travel long distances for competent providers and were more willing to seek care from an institution actively working to change a formerly negative reputation. Patients described high-quality organizations as prioritizing staff training (95.5%), having inclusive policies (93.3%), and hiring expert staff (86.0%). Programs should ensure cultural competency training for all staff. They should recruit and retain providers skilled in transgender medicine, especially trans-identified providers. Patient experience and reputation in the community influence where patients seek care.


Patient-Centered Care , Transgender Persons , Humans , Transgender Persons/psychology , Patient-Centered Care/organization & administration , Female , Male , Adult , Middle Aged , United States , Young Adult , Patient Acceptance of Health Care , Surveys and Questionnaires
5.
BMC Health Serv Res ; 24(1): 540, 2024 Apr 27.
Article En | MEDLINE | ID: mdl-38678236

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.


Hypertension , Patient-Centered Care , Humans , Patient-Centered Care/organization & administration , Hypertension/therapy , Longitudinal Studies , Pakistan , Community Health Services/organization & administration , Primary Health Care/organization & administration , Quality Improvement/organization & administration , Male , Female
6.
PLoS One ; 19(4): e0301796, 2024.
Article En | MEDLINE | ID: mdl-38687719

BACKGROUND: The expansion of the Patient-Centred Medical Home model presents a valuable opportunity to enhance the integration of team-based mental health services in primary care settings, thereby meeting the growing demand for such services. Understanding the organizational context of a Patient-Centred Medical Home is crucial for identifying the facilitators and barriers to integrating mental health care within primary care. The main objective of this paper is to present the findings related to the following research question: "What organizational features shape Family Health Teams' capacity to provide mental health services for depression and anxiety across Ontario, Canada?" METHODS: Adopting a constructivist grounded theory approach, we conducted interviews with various mental health care providers, and administrators within Ontario's Family Health Teams, in addition to engaging provincial policy informants and community stakeholders. Data analysis involved a team-based approach, including code comparison and labelling, with a dedicated data analysis subcommittee convening monthly to explore coded concepts influencing contextual factors. RESULTS: From the 96 interviews conducted, involving 82 participants, key insights emerged on the organizational contextual features considered vital in facilitating team-based mental health care in primary care settings. Five prominent themes were identified: i) mental health explicit in the organizational vision, ii) leadership driving mental health care, iii) developing a mature and stable team, iv) adequate physical space that facilitates team interaction, and v) electronic medical records to facilitate team communication. CONCLUSIONS: This study underscores the often-neglected organizational elements that influence primary care teams' capacity to deliver quality mental health care services. It highlights the significance of strong leadership complemented by effective communication and collaboration within teams to enhance their ability to provide mental health care. Strengthening relationships within primary care teams lies at the core of effective healthcare delivery and should be leveraged to improve the integration of mental health care.


Grounded Theory , Mental Health Services , Primary Health Care , Humans , Mental Health Services/organization & administration , Primary Health Care/organization & administration , Ontario , Patient Care Team/organization & administration , Leadership , Patient-Centered Care/organization & administration , Mental Health
7.
Artif Intell Med ; 151: 102850, 2024 May.
Article En | MEDLINE | ID: mdl-38555849

The ongoing digital revolution in the healthcare sector, emphasized by bodies like the US Food and Drug Administration (FDA), is paving the way for a shift towards person-centric healthcare models. These models consider individual needs, turning patients from passive recipients to active participants. A key factor in this shift is Artificial Intelligence (AI), which has the capacity to revolutionize healthcare delivery due to its ability to personalize it. With the rise of software in healthcare and the proliferation of the Internet of Things (IoT), a surge of digital data is being produced. This data, alongside improvements in AI's explainability, is facilitating the spread of person-centric healthcare models, aiming at improving health management and patient experience. This paper outlines a human-centered methodology for the development of an AI-as-a-service platform with the goal of broadening access to personalized healthcare. This approach places humans at its core, aiming to augment, not replace, human capabilities and integrate in current processes. The primary research question guiding this study is: "How can Human-Centered AI principles be considered when designing an AI-as-a-service platform that democratizes access to personalized healthcare?" This informed both our research direction and investigation. Our approach involves a design fiction methodology, engaging clinicians from different domains to gather their perspectives on how AI can meet their needs by envisioning potential future scenarios and addressing possible ethical and social challenges. Additionally, we incorporate Meta-Design principles, investigating opportunities for users to modify the AI system based on their experiences. This promotes a platform that evolves with the user and considers many different perspectives.


Artificial Intelligence , Humans , Precision Medicine/methods , Delivery of Health Care/organization & administration , Patient-Centered Care/organization & administration , Internet of Things
8.
Matern Child Health J ; 27(3): 476-486, 2023 Mar.
Article En | MEDLINE | ID: mdl-36460883

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.


Child Health Services , Health Services Accessibility , Patient Care Team , Patient-Centered Care , Social Determinants of Health , Child , Humans , Child Health Services/organization & administration , Health Services Accessibility/organization & administration , Income , Outcome Assessment, Health Care , Patient-Centered Care/organization & administration , Patient Care Team/organization & administration , Pediatrics/organization & administration
9.
J Health Care Poor Underserved ; 34(3S): 183-207, 2023.
Article En | MEDLINE | ID: mdl-38661925

Capacity-building in trauma-informed care and harm reduction approaches with Southern HIV service organizations must be implemented in ways that foster trust and spur organizational change. Using an equity-centered implementation science framework, this study examines implementation strategies of the SUSTAIN COMPASS Coordinating Center's person-centered care (PCC) capacity-building interventions. METHODS: Fifty-eight (58) in-depth qualitative interviews with staff (N=116) who received PCC capacity-building were analyzed using modified grounded theory. RESULTS: Analysis identified four factors of equity-centered implementation that facilitated PCC capacity-building implementation. 1) Innovation factors: SUSTAIN models PCC approaches when implementing PCC capacity-building. 2) Inner factors: SUSTAIN employs PCC approaches. 3) Outer factors: SUSTAIN highlights socio-political factors that may influence PCC implementation. 4) Bridging factors: SUSTAIN facilitates partnerships to promote PCC learning and sustainability. CONCLUSION: SUSTAIN PCC capacity-building advances health equity through operationalizing personcentered care in capacity-building implementation.


Capacity Building , HIV Infections , Patient-Centered Care , Humans , Capacity Building/organization & administration , HIV Infections/therapy , HIV Infections/prevention & control , Patient-Centered Care/organization & administration , Health Equity/organization & administration , Qualitative Research , Interviews as Topic , Organizational Innovation
10.
Pediatrics ; 149(3)2022 03 01.
Article En | MEDLINE | ID: mdl-35224638

The use of telehealth technology to connect with patients has expanded significantly over the past several years, particularly in response to the global coronavirus disease 2019 pandemic. This technical report describes the present state of telehealth and its current and potential applications. Telehealth has the potential to transform the way care is delivered to pediatric patients, expanding access to pediatric care across geographic distances, leveraging the pediatric workforce for care delivery, and improving disparities in access to care. However, implementation will require significant efforts to address the digital divide to ensure that telehealth does not inadvertently exacerbate inequities in care. The medical home model will continue to evolve to use telehealth to provide high-quality care for children, particularly for children and youth with special health care needs, in accordance with current and evolving quality standards. Research and metric development are critical for the development of evidence-based best practices and policies in these new models of care. Finally, as pediatric care transitions from traditional fee-for-service payment to alternative payment methods, telehealth offers unique opportunities to establish value-based population health models that are financed in a sustainable manner.


Health Care Costs , Health Services Accessibility/organization & administration , Pediatrics/methods , Pediatrics/organization & administration , Quality of Health Care/organization & administration , Telemedicine/methods , Telemedicine/organization & administration , Adolescent , Child , Child, Preschool , Healthcare Disparities , Humans , Infant , Infant, Newborn , Patient-Centered Care/economics , Patient-Centered Care/organization & administration , Pediatrics/economics , Pediatrics/standards , Telemedicine/economics , Telemedicine/standards , United States
13.
Eur J Clin Pharmacol ; 78(1): 127-137, 2022 Jan.
Article En | MEDLINE | ID: mdl-34448906

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.


Medication Adherence/statistics & numerical data , Medication Therapy Management/organization & administration , Multimorbidity , Patient-Centered Care/organization & administration , Polypharmacy , Age Factors , Aged , Aged, 80 and over , Female , Frail Elderly , Humans , Male , Motivational Interviewing , Potentially Inappropriate Medication List , Sex Factors
15.
Fertil Steril ; 117(1): 27-32, 2022 01.
Article En | MEDLINE | ID: mdl-34763833

Delivery of fertility treatment involves both teamwork within a discipline as well as teaming across multiple work areas, such as nursing, administrative, laboratory, and clinical. In contrast to small autonomous centers, the in vitro fertilization (IVF) laboratory team in large clinics must function both as a team with many members and a constellation of teams to deliver seamless, safe, and effective patient-centered care. Although this review primarily focuses on teamwork within the IVF laboratory, which comprises clinical laboratory scientists and embryologists who perform both diagnostic and therapeutic procedures, it also discusses the laboratory's wider role with other teams of the IVF clinic, and the role of teaming (the ad hoc creation of multidisciplinary teams) to function highly and address critical issues.


Fertilization in Vitro , Laboratories/organization & administration , Patient Care Team/organization & administration , Female , Fertilization in Vitro/methods , Humans , Interdisciplinary Communication , Male , Patient-Centered Care/organization & administration , Pregnancy , Reproductive Medicine/methods , Reproductive Medicine/organization & administration
16.
Palliat Support Care ; 20(6): 794-800, 2022 12.
Article En | MEDLINE | ID: mdl-36942585

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.


Cancer Care Facilities , Comprehensive Health Care , Intensive Care Units , Neoplasms , Patient-Centered Care , Professional-Family Relations , Humans , Critical Care/organization & administration , Family/psychology , Intensive Care Units/organization & administration , Neoplasms/therapy , Cancer Care Facilities/organization & administration , Patient-Centered Care/organization & administration , Quality Improvement , Male , Female , Adult , Middle Aged
17.
Article En | LILACS | ID: biblio-1369765

OBJECTIVE: To develop a collaborative, multidisciplinary care model for older adults that improves interdisciplinary teamwork and increases access to specialized services for frail patients, helping solve management problems in the Brazilian Unified Health System. In the state of Bahia, the health care network for older adults requires better interaction and integration with the Unified Health System and the Unified System of Social Assistance to improve patient flow in the network. METHODS: We used a co-creation and participatory action research approach based on reflection, data collection, interaction, and feedback with participants and stakeholders. Data was collected from health professionals, representatives of health agencies, and older adults through collective and individual interviews, reflective diaries, and direct communication. RESULTS: An action plan involving members of the older adult care network was developed to put the new model into practice. A pilot study with a multidisciplinary team allowed adjustments and implementation of the model at our institution. CONCLUSIONS: The new model improved both the internal management of the State Reference Center for Older Adult Health Care (Centro de Referência Estadual de Atenção à Saúde do Idoso - CREASI) and its interaction with primary care, optimizing patient flow and establishing rules for shared management between CREASI and primary care institutions. In view of this, restructuring the care model reorganized relations between the agencies, expanding CREASI's role in the management and systematization of older adult health.


OBJETIVO: Desenvolver um modelo assistencial colaborativo, multiprofissional e centrado na pessoa idosa para melhorar o trabalho em equipe interdisciplinar e o acesso de idosos frágeis ao serviço especializado, ajudando na resolução de problemas com o gerenciamento do idoso no Sistema Único de Saúde (SUS). A rede de assistência à saúde do idoso na Bahia requer avanços na interação e na integração entre os órgãos do SUS e do Sistema Único de Assistência Social para melhorar o fluxo dos pacientes na rede. METODOLOGIA: Foi realizada uma pesquisa-ação participativa e cocriação baseadas na reflexão, coleta de dados, interação e feedback com participantes e partes interessadas. A coleta dos dados foi realizada com os profissionais de saúde, representantes dos órgãos de saúde e idosos por meio entrevistas coletivas e individuais, diários reflexivos e registros de comunicação direta. RESULTADOS: Foi elaborado um plano de ação com participação dos membros da rede de assistência ao idoso para colocar em prática o novo modelo. Realizou-se um piloto com uma equipe multidisciplinar que possibilitou ajustes e a implementação do modelo na instituição. CONCLUSÕES: O novo modelo favoreceu tanto o gerenciamento interno do Centro de Referência Estadual de Atenção à Saúde do Idoso (CREASI) como a interação com a atenção básica, otimizando o fluxo de pacientes e estabelecendo regras de gerenciamento compartilhado entre CREASI e atenção básica. Diante disso, a reestruturação do modelo assistencial representou uma reorganização das relações entre os órgãos, ampliando o papel do CREASI no gerenciamento e na sistematização da saúde do idoso.


Humans , Aged , Patient Care Team , Participatory Planning , Patient-Centered Care/organization & administration , Comprehensive Health Care/organization & administration , Healthcare Models
19.
Cancer Control ; 28: 10732748211038734, 2021.
Article En | MEDLINE | ID: mdl-34657452

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.


Breast Neoplasms/therapy , Cancer Survivors , Ethnic and Racial Minorities , Patient-Centered Care/organization & administration , Safety-net Providers/organization & administration , Survivorship , Female , Health Status , Humans , Mental Health , Patient Navigation/organization & administration , Physical Functional Performance , Poverty , Quality of Life , Social Participation , Sociodemographic Factors , United States
20.
PLoS One ; 16(10): e0259208, 2021.
Article En | MEDLINE | ID: mdl-34705883

BACKGROUND: Children with complex chronic multisystemic diseases frequently require care from multiple pediatric subspecialists. The aerodigestive program is a multidisciplinary program that diagnoses and treats pediatric patients with complex multi-systematic problems affecting airway, breathing, feeding, swallowing, or growth. The aim of this study is to present the protocol of the aerodigestive program of a children's hospital. METHODS AND DESIGN: This study is a prospective study to evaluate and compare the overall improvement of patients' objective and subjective conditions before and after the AeroDigestive Team (ADT) program. Among children from 1 month to 18 years of age, patients with complex problems of the airway, breathing, feeding, swallowing, or growth meeting at least two parameters of the inclusion criteria were enrolled. The overall process included referral based on the inclusion criteria, enrollment of ADT program with informed consents, interview and questionnaire for assessing patients' medical condition, prescheduling appointment, multi-specialists' evaluation, monthly team meetings, wrap-up discussion with the patients and family, therapeutic intervention, and follow-up at 6 months with the assessment of outcome measures. The outcome was evaluated objectively and subjectively. The objective outcome measure was divided into surgical or medical intervention, assessment of changes in medical condition, and follow-up study. Both caregiver interviews and questionnaires using a scoring system were used as subjective outcome measures before and after the ADT program. Children were scheduled to be followed-up at 6 months after the interventions or ADT meeting. DISCUSSION: The aerodigestive program is expected to provide comprehensive and multidisciplinary management of children with complex airway and digestive tract disorders.


Gastrointestinal Diseases/therapy , Patient Care Team/standards , Practice Guidelines as Topic , Respiratory Tract Diseases/therapy , Adolescent , Child , Child, Preschool , Disease Management , Female , Gastrointestinal Diseases/complications , Humans , Infant , Interdisciplinary Communication , Male , Patient Care Team/organization & administration , Patient-Centered Care/organization & administration , Patient-Centered Care/standards , Respiratory Tract Diseases/complications
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