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1.
J Gen Intern Med ; 39(13): 2425-2431, 2024 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-38981941

RESUMO

BACKGROUND: Screening for health-related social needs (HRSN) has become more widespread but the best method of delivering the screening tool is not yet known. OBJECTIVE: Describe HRSN screening completion rate, specifically portal-based and in-person tablet-based screening. DESIGN: Cross-sectional retrospective observational study. PARTICIPANTS: Adults age 18 or older who had a non-acute primary care visit at one of three internal medicine primary care clinics at a large, urban, academic medical center between July 2022 and July 2023. MAIN MEASURES: We identified the proportion of individuals who were screened using the HRSN questionnaire, whether screening was completed by patient-portal or tablet, as well as the degree of burden of HRSN. Using the electronic health record, we explored associations between sociodemographic characteristics and HRSN attributes. KEY RESULTS: Our study included 24,597 patients, of whom 37% completed the HRSN questionnaire. A smaller proportion of Black/African American patients and those with Medicaid insurance completed the questionnaire, yet they comprised a greater percentage of those who screened positive for unmet HRSN (p ≤ 0.001). Most patients completed the questionnaire by patient-portal (86.1%) compared with in-office tablets (14.0%). A larger proportion of those who completed screening by tablet screened positive for HRSN. Of all patients screened, 21.8% were positive for an unmet HRSN and 11.5% had more than one unmet HRSN. CONCLUSIONS: A majority of patients are not being screened for HRSN and results illustrate disparities when screening patients for HRSN through portal-based compared with supplemental in-office tablet-based screening. Prevalence of unmet HRSN varied by demographics such as race and insurance status.


Assuntos
Computadores de Mão , Portais do Paciente , Atenção Primária à Saúde , Humanos , Masculino , Feminino , Estudos Transversais , Pessoa de Meia-Idade , Estudos Retrospectivos , Adulto , Portais do Paciente/estatística & dados numéricos , Idoso , Programas de Rastreamento/métodos , Inquéritos e Questionários , Adulto Jovem
2.
Ann Fam Med ; 22(1): 31-36, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38253494

RESUMO

PURPOSE: Physically or psychologically distressing birth experiences can influence postpartum health, parenting efficacy, and future pregnancy plans. Communication deficits contribute to negative birth experiences. This qualitative analysis explored themes related to communication and negative birth experiences among Black birthing people who experienced preterm birth. METHODS: We conducted qualitative interviews with non-Hispanic Black, English language-proficient birthing people with Medicaid-insured preterm infants. Interviews were designed to explore experiences with health care access and well-being after birth. Interviews were audio recorded, transcribed, and coded following an integrated approach where we applied a priori codes and captured emergent themes from the data. RESULTS: We interviewed 30 participants from October 2018 to July 2021. Median gestational age at birth was 30 weeks (range 22-36 weeks). Interviews occurred a median of 7 months postpartum (range 2-34 months). Themes emerged related to negative birth experiences and communication: (1) communication gaps during urgent or emergent intrapartum procedures contributed to negative birth experiences; (2) postpartum opportunities to share birth experiences, particularly with peers, sometimes mitigated the psychological consequences of negative birth experiences; (3) participants did not consistently discuss concerns about future pregnancy risk related to negative birth experiences with clinical teams. CONCLUSIONS: Themes from this sample of Black birthing people who experienced preterm birth suggest 3 ways health systems might intervene to improve communication to mitigate the consequences of negative birth experiences. Improvement efforts in these areas may improve postpartum health, future pregnancy outcomes, and long-term health.


Assuntos
Nascimento Prematuro , Recém-Nascido , Lactente , Estados Unidos , Feminino , Gravidez , Humanos , Recém-Nascido Prematuro , Comunicação , Acessibilidade aos Serviços de Saúde , Medicaid
3.
BMC Med Res Methodol ; 24(1): 244, 2024 Oct 18.
Artigo em Inglês | MEDLINE | ID: mdl-39425055

RESUMO

BACKGROUND: Traditional medical research infrastructures relying on the Centers of Excellence (CoE) model (an infrastructure or shared facility providing high standards of research excellence and resources to advance scientific knowledge) are often limited by geographic reach regarding patient accessibility, presenting challenges for study recruitment and accrual. Thus, the development of novel, patient-centered (PC) strategies (e.g., the use of online technologies) to support recruitment and streamline study procedures are necessary. This research focused on an implementation evaluation of a design innovation with implementation outcomes as communicated by study staff and patients for CoE and PC approaches for a randomized controlled trial (RCT) for patients with vasculitis. METHODS: In-depth qualitative interviews were conducted with 32 individuals (17 study team members, 15 patients). Transcripts were coded using the Consolidated Framework for Implementation Research (CFIR). RESULTS: The following CFIR elements emerged: characteristics of the intervention, inner setting, characteristics of individuals, and process. From the staff perspective, the communication of the PC approach was a major challenge, but should have been used as an opportunity to identify one "point person" in charge of all communicative elements among the study team. Study staff from both arms were highly supportive of the PC approach and saw its promise, particularly regarding online consent procedures. Patients reported high self-efficacy in reference to the PC approach and utilization of online technologies. Local physicians were integral for making patients feel comfortable about participation in research studies. CONCLUSIONS: The complexity of replicating the interpersonal nature of the CoE model in the virtual setting is substantial, meaning the PC approach should be viewed as a hybrid strategy that integrates online and face-to-face practices. TRIAL REGISTRATIONS: 1) Name: The Assessment of Prednisone In Remission Trial - Centers of Excellence Approach (TAPIR). TRIAL REGISTRATION NUMBER: ClinicalTrials.gov NCT01940094 . Date of registration: September 10, 2013. 2) Name: The Assessment of Prednisone In Remission Trial - Patient Centric Approach (TAPIR). TRIAL REGISTRATION NUMBER: Clinical Trials.gov NCT01933724 . Date of registration: September 2, 2013.


Assuntos
Pesquisa Biomédica , Humanos , Masculino , Feminino , Pesquisa Biomédica/métodos , Pesquisa Qualitativa , Pessoa de Meia-Idade , Seleção de Pacientes , Adulto , Internet , Ensaios Clínicos Controlados Aleatórios como Assunto/métodos , Projetos de Pesquisa , Comunicação
4.
Matern Child Health J ; 28(2): 351-361, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37980700

RESUMO

OBJECTIVES: Care management programs for medically complex infants interact with parents after complicated pregnancies, when gaps in maternal health care are well documented. These care managers may have the relationships and skills to promote postpartum and interconception health and health care access. It is unknown whether expanding these care management models to address maternal needs would be acceptable. METHODS: We conducted qualitative interviews with women with a history of preterm birth and clinicians. For women with a history of preterm birth, additional inclusion criteria were Medicaid-insured infant in one health system and English proficiency. We purposively oversampled women whose infants received care management. Clinicians worked in two geographically adjacent health systems. Interviews explored priorities after preterm birth and perceived acceptability of mother-infant dyad care management. Interviews were audio recorded, transcribed, and coded following an integrated approach in which we applied a priori codes and captured emergent themes. RESULTS: We interviewed 33 women (10/2018-7/2021) and 24 clinicians (3/2021-8/2021). Women were predominantly non-Hispanic Black, and 15 had infants receiving care management. Clinicians included physicians, nurses, and social workers from Pediatrics, Obstetrics, and Family Medicine. Subgroups converged thematically, finding care management acceptable. Tailoring programs to address stress and sleep, emphasizing care managers with strong interpersonal skills and shared experiences with care management users, and program flexibility would contribute to acceptability. CONCLUSIONS FOR PRACTICE: Dyad care management after preterm birth is acceptable to potential program end-users and clinicians. Dyad health promotion may contribute to improved birth outcomes, infant, and parent health.


Assuntos
Obstetrícia , Nascimento Prematuro , Gravidez , Lactente , Recém-Nascido , Humanos , Feminino , Criança , Período Pós-Parto , Mães , Pesquisa Qualitativa
5.
J Gen Intern Med ; 2023 Nov 27.
Artigo em Inglês | MEDLINE | ID: mdl-38010463

RESUMO

BACKGROUND: Clinician burnout has become a major issue in the USA, contributing to increased mental health challenges and problems with quality of care, productivity, and retention. OBJECTIVE: The objective of this study was to understand primary care clinicians' perspectives on burnout during the COVID-19 pandemic as well as their perspectives on the causes of burnout and strategies to improve clinician well-being. APPROACH: This qualitative research involved in-depth interviews with 27 primary care clinicians practicing in a range of settings across the USA. Semi-structured interviews lasted between 60 and 90 min and were conducted using Zoom video conferencing software between July 2021 and February 2023. Transcripts were analyzed in NVivo software using multiple cycles of coding. KEY RESULTS: Clinicians shared their experiences with burnout and mental health challenges during the COVID-19 pandemic. Contributors to burnout included high levels of documentation, inefficiencies of electronic health record (EHR) systems, high patient volume, staffing shortages, and expectations for responding to patient emails and telephone calls. The majority of participants described the need to work after clinic hours to complete documentation. Many clinicians also discussed the need for health system leaders to make sincere efforts to enhance work-life balance and create a culture of health and well-being for health professionals. Suggested strategies to address these issues included supportive leadership, accessible mental health services, and additional administrative time to complete documentation. CONCLUSIONS: The results of this study provide an in-depth view of participating primary care clinicians' experiences and perceptions of burnout and other mental health challenges. These viewpoints can improve awareness of the issues and strategies to improve the health and well-being of our clinician workforce. Strategies include aligning payment models with the best approaches for delivering quality patient care, reducing administrative burden related to documentation, and redesigning EHR systems with a human factors approach.

6.
Ann Fam Med ; 21(Suppl 2): S31-S38, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-36849482

RESUMO

PURPOSE: We undertook a study to examine how stigma influences the uptake of training on medication for opioid use disorder (MOUD) in primary care academic programs. METHODS: We conducted a qualitative study of 23 key stakeholders responsible for implementing MOUD training in their academic primary care training programs that were participants in a learning collaborative in 2018. We assessed barriers to and facilitators of successful program implementation and used an integrated approach to develop a codebook and analyze the data. RESULTS: Participants represented the family medicine, internal medicine, and physician assistant fields, and they included trainees. Most participants described clinician and institutional attitudes, misperceptions, and biases that enabled or hindered MOUD training. Perceptions included concerns that patients with OUD are "manipulative" or "drug seeking." Elements of stigma in the origin domain (ie, beliefs by primary care clinicians or the community that OUD is a choice and not a disease), the enacted domain (eg, hospital bylaws banning MOUD and clinicians declining to obtain an X-Waiver to prescribe MOUD), and the intersectional domain (eg, inadequate attention to patient needs) were perceived as major barriers to MOUD training by most respondents. Participants described strategies that improved the uptake of training, including giving attention to clinician concerns, clarifying the biology of OUD, and ameliorating clinician fears of being ill equipped to provide care for patients. CONCLUSIONS: OUD-related stigma was commonly reported in training programs and impeded the uptake of MOUD training. Potential strategies to address stigma in the training context, beyond providing content on effective evidence-based treatments, include addressing the concerns of primary care clinicians and incorporating the chronic care framework into OUD treatment.


Assuntos
Aprendizagem , Transtornos Relacionados ao Uso de Opioides , Humanos , Estigma Social , Pesquisa Qualitativa , Transtornos Relacionados ao Uso de Opioides/terapia , Atenção Primária à Saúde
7.
Matern Child Health J ; 27(2): 218-225, 2023 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-36670308

RESUMO

BACKGROUND: Pregnancy and early parenthood can be challenging transitional times for many families, especially those struggling with opioid use disorder (OUD). Over 8 million children live with a parent with SUD and parental drug use has been attributed to rising rates of family instability and child welfare involvement (Lipari & Van Horn, 2017; AFCARS, 2020;). Community-based prevention programming for families with young children, such as evidence-based maternal and child home visiting (EBHV), may we well positioned to engage and support families impacted by the opioid epidemic through early childhood. This paper presents case studies to highlight promising practices for adapting EBHV models to families impacted by SUD from the perspectives of staff and administrators. METHODS: Data from three pilot sites are presented as case studies. These sites were selected to represent the most innovative and developed adaptations to EBHV for families impacted by substance use from an implementation evaluation of state-funded pilot sites (N = 20) at existing home visiting agencies across Pennsylvania. Data reported here represent semi-structured interviews with 11 individuals. Data were coded to facilitators and barriers nodes to understand the process and impact of pilot implementation. RESULTS: Systems-level collaboration and coordination were key to serving a population already engaged in multiple systems. Engagement of substance use experts allowed home visitors to focus on delivery of evidence-based curricula supporting family stability and child development. External partnerships reduced stigma among home visitors. Across sites, staff struggled with the increased acuity of social complexity of the OUD population. CONCLUSIONS FOR PRACTICE: Pregnancy and early parenthood are challenging transitional times for many families, especially those with OUD. Evaluation results demonstrate the promise of systems-based adaptations to community-based prevention programming for families with young children, such as maternal and child home visiting, to better support families impacted by SUD.


Assuntos
Transtornos Relacionados ao Uso de Opioides , Pais , Criança , Gravidez , Feminino , Humanos , Pré-Escolar , Pennsylvania , Família , Cuidado Pós-Natal , Visita Domiciliar , Transtornos Relacionados ao Uso de Opioides/prevenção & controle
8.
Pediatr Diabetes ; 22(8): 1150-1161, 2021 12.
Artigo em Inglês | MEDLINE | ID: mdl-34713537

RESUMO

OBJECTIVE: US disparities in pediatric type 1 diabetes treatment and outcomes are increasing disproportionately among Black youth and compounded for youth from single parent homes. Despite worsened outcomes, Black youth from single parent homes and their caregivers are underrepresented in pediatric type 1 diabetes research. The purpose of this study was to understand the social determinants of health (SDOH) barriers that may contribute to health disparities and family management in Black youth with type 1 diabetes from single parent homes. RESEARCH DESIGN AND METHODS: A three-phase mixed methods study with self-identified Black single parents of youth with type 1 diabetes from an urban US pediatric diabetes center was conducted. Focus groups and interviews informed development of a parent-generated survey of SDOH barriers to diabetes management. Survey results are presented. RESULTS: A resulting 71 item parent-generated survey was administered to 105 parents. Among all items, most problematic SDOH barriers included lack of social support, managing parent/child diabetes-related stress, difficulties accessing diabetes supplies, pain management, cost of food and diabetes camp, need to take time off from work, lack of skilled school staff, school absences and unsafe neighborhoods. Structural racism related to child welfare reporting, and police targeting were also notable concerns. CONCLUSIONS: There is a critical need for clinical, community, and policy-related research and interventions, designed to reduce type 1 diabetes racial health disparities by addressing the impacts of SDOH as drivers of family management outcomes among Black youth from single parent families.


Assuntos
Negro ou Afro-Americano/etnologia , Diabetes Mellitus Tipo 1/etnologia , Gerenciamento Clínico , Família Monoparental/etnologia , Determinantes Sociais da Saúde/estatística & dados numéricos , Adolescente , Adulto , Negro ou Afro-Americano/psicologia , Idoso , Criança , Pré-Escolar , Diabetes Mellitus Tipo 1/psicologia , Diabetes Mellitus Tipo 1/terapia , Feminino , Grupos Focais , Humanos , Masculino , Pessoa de Meia-Idade , Philadelphia/epidemiologia , Família Monoparental/psicologia , Inquéritos e Questionários
9.
Harm Reduct J ; 18(1): 75, 2021 07 23.
Artigo em Inglês | MEDLINE | ID: mdl-34301246

RESUMO

BACKGROUND: The incidence of opioid-related overdose deaths has been rising for 30 years and has been further exacerbated amidst the COVID-19 pandemic. Naloxone can reverse opioid overdose, lower death rates, and enable a transition to medication for opioid use disorder. Though current formulations for community use of naloxone have been shown to be safe and effective public health interventions, they rely on bystander presence. We sought to understand the preferences and minimum necessary conditions for wearing a device capable of sensing and reversing opioid overdose among people who regularly use opioids. METHODS: We conducted a combined cross-sectional survey and semi-structured interview at a respite center, shelter, and syringe exchange drop-in program in Philadelphia, Pennsylvania, USA, during the COVID-19 pandemic in August and September 2020. The primary aim was to explore the proportion of participants who would use a wearable device to detect and reverse overdose. Preferences regarding designs and functionalities were collected via a questionnaire with items having Likert-based response options and a semi-structured interview intended to elicit feedback on prototype designs. Independent variables included demographics, opioid use habits, and previous experience with overdose. RESULTS: A total of 97 adults with an opioid use history of at least 3 months were interviewed. A majority of survey participants (76%) reported a willingness to use a device capable of detecting an overdose and automatically administering a reversal agent upon initial survey. When reflecting on the prototype, most respondents (75.5%) reported that they would wear the device always or most of the time. Respondents indicated discreetness and comfort as important factors that increased their chance of uptake. Respondents suggested that people experiencing homelessness and those with low tolerance for opioids would be in greatest need of the device. CONCLUSIONS: The majority of people sampled with a history of opioid use in an urban setting were interested in having access to a device capable of detecting and reversing an opioid overdose. Participants emphasized privacy and comfort as the most important factors influencing their willingness to use such a device. TRIAL REGISTRATION: NCT04530591.


Assuntos
Naloxona/administração & dosagem , Antagonistas de Entorpecentes/administração & dosagem , Overdose de Opiáceos/diagnóstico , Overdose de Opiáceos/tratamento farmacológico , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Dispositivos Eletrônicos Vestíveis/estatística & dados numéricos , Adolescente , Adulto , Criança , Estudos Transversais , Feminino , Humanos , Entrevistas como Assunto , Masculino , Naloxona/uso terapêutico , Antagonistas de Entorpecentes/uso terapêutico , Overdose de Opiáceos/psicologia , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Philadelphia , Dispositivos Eletrônicos Vestíveis/psicologia , Adulto Jovem
12.
Clin Exp Rheumatol ; 37 Suppl 121(6): 28-34, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31025933

RESUMO

OBJECTIVES: Behçet's syndrome (BS) is a multisystem variable-vessel vasculitis with significant life impact. The aim of this study was to explore the perspectives of patients with BS with different types of organ involvement. METHODS: Semi-structured qualitative interviews were conducted with 20 patients with BS with different types of organ involvement. Interviews were audio-recorded, transcribed, and translated into English. A Grounded Theory approach was employed in thematic analysis of translated interviews. RESULTS: Interviews with participants yielded four themes, including symptoms (skin problems, pain, vision problems, fatigue/sleep disturbances, and gastrointestinal/weight loss), impact on function (impact on speech and vision, mobility, energy for tasks, adaptations, and self-care), psychological impact (emotions and emotional management techniques), and social impact (ability to socialize generally and impact on familial relationships). CONCLUSIONS: Patients with BS identified several domains, including physical functioning, psychological state, and social identity that are significantly modulated by the symptoms of BS. Those are inter-related with physical symptoms, reflecting the multi-system character of BS, and impair patients' function impacting on psychological and social identities. This work advances an understanding of BS, and will be useful in developing patient-oriented outcome measures for use in studying BS.


Assuntos
Síndrome de Behçet , Transtornos do Sono-Vigília , Isolamento Social , Síndrome de Behçet/fisiopatologia , Síndrome de Behçet/psicologia , Emprego , Fadiga/etiologia , Feminino , Humanos , Entrevistas como Assunto , Masculino , Dor/etiologia , Transtornos do Sono-Vigília/etiologia , Baixa Visão/etiologia
13.
Paediatr Anaesth ; 29(4): 345-352, 2019 04.
Artigo em Inglês | MEDLINE | ID: mdl-30710425

RESUMO

BACKGROUND: Previously published work established the need for a specialty-specific definition of professionalism in pediatric anesthesiology. That work established a composite definition consisting of 11 domains and their component "defining themes" for professionalism in pediatric anesthesiology. As a next step toward assessing generalizability of our single-center findings, we sought to gain input from a national sample of pediatric anesthesiologists. AIMS: The aim of this study was to establish the construct validity of our previously published multidimensional definition of professionalism in pediatric anesthesiology using a nationally representative sample of pediatric anesthesiologists. METHODS: A survey was distributed via snowball sampling to the leaders of every pediatric anesthesiology fellowship program and pediatric anesthesia department or clinical division in the United States. Survey items were designed to validate individual component themes in the working definition. For affirmed items, the respondent was asked to rate the importance of the item. Respondents were also invited to suggest novel themes to be included in the definition. RESULTS: A total of 216 pediatric anesthesiologists representing a variety of experience levels and practice settings responded to the survey. All 40 themes were strongly supported by the respondents, with the least supported theme receiving 71.6% approval. 92.8% of respondents indicated that the 11 domains previously identified formed a comprehensive list of domains for professionalism in pediatric anesthesiology. Four additional novel themes were suggested by respondents, including wellness/self-care/burnout prevention, political advocacy, justice within a practice organization, and respect for leadership/experienced partners. These are topics for future study. The survey responses also indicated a near-universal agreement that didactic lectures would be ineffective for teaching professionalism. CONCLUSION: This national survey of pediatric anesthesiologists serves to confirm the construct validity of our prior working definition of professionalism in pediatric anesthesiology, and has uncovered several opportunities for further study. This definition can be used for both curriculum and policy development within the specialty.


Assuntos
Anestesiologistas/normas , Anestesiologia/normas , Pediatria/normas , Profissionalismo/normas , Anestesiologistas/educação , Anestesiologia/educação , Humanos , Internato e Residência , Pediatria/educação , Profissionalismo/educação , Inquéritos e Questionários
14.
Ann Rheum Dis ; 77(8): 1157-1164, 2018 08.
Artigo em Inglês | MEDLINE | ID: mdl-29695498

RESUMO

OBJECTIVES: To finalise and validate a disease-specific patient-reported outcome (PRO) measure: the ANCA-associated vasculitis patient-reported outcome (AAV-PRO) questionnaire. Using a 35-item candidate questionnaire developed following 50 qualitative interviews in the UK, USA and Canada, a longitudinal survey was conducted to determine the final scale structure and validate the AAV-PRO. METHODS: Participants were recruited via Vasculitis UK and the Vasculitis Patient-Powered Research Network. The 35-item candidate questionnaire was completed at baseline and 3 months; UK participants completed the EuroQol-5D-5L (EQ-5D-5L), while US participants completed a test-retest exercise, 3-5 days after baseline. Scale structure was defined using exploratory factor analysis (EFA) and Rasch analysis. Convergent and known groups validity, test-retest reliability and longitudinal construct validity were assessed. RESULTS: There were 626 participants with AAV; >25% reporting 'active disease'. EFA and Rasch analysis supported a 29-item profile measure comprising six domains: 'organ-specific symptoms', 'systemic symptoms', 'treatment side effects', 'social and emotional impact', 'concerns about the future' and 'physical function'. Mean domain scores were higher for participants with 'active disease' versus 'remission' (p<0.001). Construct validity was demonstrated by correlations between domain scores and the EQ-5D-5L (range r=-0.55 to 0.78), all p<0.0001. In participants reporting 'no change' (n=97) during the test-retest, intraclass correlation coefficient values were high (range 0.89-0.96) for each domain. CONCLUSIONS: The AAV-PRO, a new disease-specific PRO measure for AAV, has good face and construct validity, is reliable, feasible and discriminates among disease states.


Assuntos
Vasculite Associada a Anticorpo Anticitoplasma de Neutrófilos/terapia , Medidas de Resultados Relatados pelo Paciente , Adulto , Idoso , Vasculite Associada a Anticorpo Anticitoplasma de Neutrófilos/psicologia , Canadá , Estudos de Viabilidade , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Indução de Remissão , Reprodutibilidade dos Testes , Fatores Socioeconômicos , Inquéritos e Questionários , Reino Unido , Estados Unidos , Adulto Jovem
15.
Rheumatol Int ; 38(4): 675-682, 2018 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-29124398

RESUMO

Granulomatosis with polyangiitis (GPA), microscopic polyangiitis (MPA), and eosinophilic granulomatosis with polyangiitis (EGPA) are multisystem diseases of small blood vessels, collectively known as the anti-neutrophil cytoplasmic antibody (ANCA)-associated vasculitides (AAV). This study explores the patient's perspective on the use of glucocorticoids, which are still a mainstay of treatment in AAV. Patients with AAV from the UK, USA, and Canada were interviewed, using purposive sampling to include a range of disease manifestations and demographics. The project steering committee, including patient partners, designed the interview prompts and cues about AAV, its treatment, and impact on health-related quality of life. Interviews were transcribed and analysed to establish themes grounded in the data. A treatment-related code was used to focus analysis of salient themes related to glucocorticoid therapy. Fifty interviews were conducted. Individual themes related to therapy with glucocorticoids emerged from the data and were analysed. Three overarching themes emerged: (1) Glucocorticoids are effective at the time of diagnosis and during relapse, and withdrawal can potentiate a flare, (2) glucocorticoids are associated with salient emotional, physical, and social effects (depression, anxiety, irritation, weight gain and change in appearance, diabetes mellitus, effect on family and work); and (3) patient perceptions of balancing the risks and benefits of glucocorticoids. Patients identified the positive aspects of treatment with glucocorticoids; they are fast-acting and effective, but, they voiced concerns about adverse effects and the uncertainty of the dose-reduction process. These results may be informative in the development of novel glucocorticoid-sparing regimens.


Assuntos
Vasculite Associada a Anticorpo Anticitoplasma de Neutrófilos/tratamento farmacológico , Glucocorticoides/uso terapêutico , Conhecimentos, Atitudes e Prática em Saúde , Pacientes/psicologia , Idoso , Vasculite Associada a Anticorpo Anticitoplasma de Neutrófilos/diagnóstico , Vasculite Associada a Anticorpo Anticitoplasma de Neutrófilos/psicologia , Canadá , Progressão da Doença , Feminino , Glucocorticoides/efeitos adversos , Humanos , Entrevistas como Assunto , Masculino , Saúde Mental , Pessoa de Meia-Idade , Segurança do Paciente , Pesquisa Qualitativa , Qualidade de Vida , Recidiva , Indução de Remissão , Medição de Risco , Resultado do Tratamento , Reino Unido , Estados Unidos
16.
Matern Child Health J ; 22(6): 883-892, 2018 06.
Artigo em Inglês | MEDLINE | ID: mdl-29429135

RESUMO

Objectives The aim of this paper is to explore the process and impact of co-locating evidence-based maternal and child service models to inform future implementation efforts. Methods As part of a state-wide evaluation of maternal and child home visiting programs, we conducted semi-structured interviews with administrators and home visitors from home visiting agencies across Pennsylvania. We collected 33 interviews from 4 co-located agencies. We used the Consolidated Framework for Implementation Research (CFIR) to describe the key elements mitigating implementation of multiple home visiting models. Results A primary advantage of co-location described by participants was the ability to increase the agency's base of eligible clients through the implementation of a model with different program eligibility (e.g. income, child age) than the existing agency offering. Model differences related to curriculum (e.g. content or intensity/meeting frequency) enabled programs to more selectively match clients to models. To recruit eligible clients, new models were able to build upon the existing service networks of the initial program. Co-location provided organizational opportunities for shared trainings, enabling administrative efficiencies and collaborative staff learning. Programs implemented strategies to build synergies with complementary model features, for instance using the additional program option to serve waitlisted clients and to transition services after one model is completed. Conclusions for Practice Considerable benefits are experienced when home visiting models co-locate. This research builds on literature encouraging collaboration among community agencies and provides insight on a specific facilitative approach. This implementation strategy informs policy across the social services spectrum and competitive funding contexts.


Assuntos
Saúde da Criança , Atenção à Saúde/organização & administração , Serviços de Assistência Domiciliar/organização & administração , Serviços de Saúde Materno-Infantil/organização & administração , Cuidado Pós-Natal , Criança , Atenção à Saúde/métodos , Medicina Baseada em Evidências , Feminino , Humanos , Entrevistas como Assunto , Pennsylvania , Gravidez , Pesquisa Qualitativa
17.
Wound Repair Regen ; 25(5): 864-870, 2017 09.
Artigo em Inglês | MEDLINE | ID: mdl-29220878

RESUMO

The purpose of this study was to explore perceptions among people with type 2 diabetes about foot ulcers and lower extremity amputations. This was a qualitative observational study utilizing open-ended, semistructured interviews of 39 people with diabetes who were purposively selected because they had either a foot ulcer (n = 19) or a lower extremity amputation (n = 20). Interviews were audio-recorded, deidentified, and entered into NVivo 10.0 for coding and analysis. Our integrated analytic approach combined inductively and deductively derived codes that were applied to all transcripts. Coded data were summarized and examined for patterns. Participants' description of the relationship between diabetes and their foot ulcer or amputation revealed a limited understanding of the disease process. Disruption and loss of independence was expressed whether the person had a foot ulcer or an amputation. Treatment recommendations for foot ulcers were viewed by most as extremely difficult. Amputation was a feared outcome, but some learned to adapt and, at times felt that the amputation enhanced their quality of life. Clinicians have assumed that a focus on limb salvage is preferred over a major amputation. However, because of the complexity of care requiring frequent healthcare provider visits, the frequency of care failure, the frequency of recurrence, and mortality associated with having had a foot ulcer, it may be more appropriate for clinicians to prioritize quality-of-life salvage. Foot ulcer treatment failure may be due to a lack of providers' understanding of the impact of treatment on a patient's life.


Assuntos
Amputação Cirúrgica/estatística & dados numéricos , Diabetes Mellitus Tipo 2/complicações , Pé Diabético/cirurgia , Extremidade Inferior/cirurgia , Garantia da Qualidade dos Cuidados de Saúde , Qualidade de Vida , Cicatrização , Pé Diabético/epidemiologia , Pé Diabético/etiologia , Feminino , Humanos , Incidência , Salvamento de Membro , Masculino , Pessoa de Meia-Idade , Philadelphia/epidemiologia , Inquéritos e Questionários
18.
Paediatr Anaesth ; 27(2): 137-146, 2017 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-28101983

RESUMO

BACKGROUND: Unprofessional behavior is a significant problem throughout graduate medical education programs and medical centers. Some authors have suggested that professionalism curricula should be focused toward faculty, not trainees, to interrupt the modeling of unprofessionalism. Developing such curricula requires a needs assessment and is challenging given data indicating that the definition of professionalism varies based on medical specialty. Thus, a specialty-specific definition of professionalism is needed as a first step in any curriculum development. AIM: The aim of this study was to define professionalism in pediatric anesthesiology. METHODS: This is a qualitative study using focus groups for data collection and a grounded theory approach for analysis. Four relevant stakeholder groups, pediatric surgeons and endoscopists, perioperative nurses, pediatric anesthesiologists, and parents of children who had undergone surgery at our facility, were recruited for participation. De-identified transcripts were analyzed and coded to derive major domains and component themes relevant to the definition of professionalism for pediatric anesthesiology. Member checking with participants from our stakeholder groups was used to validate thematic development and increase the trustworthiness of our findings. RESULTS: Focus group participants included 20 individuals, 14 of whom were female. Analysis of transcripts identified 11 major domains across the four groups: Patient Ownership, Specialty Expertise, Continuous Team Improvement, Expressive Communication, Active Listening, Care Coordination, Medical Hierarchy, Leadership, Teamwork, Personality Traits, and Physical Image. The data uncovered several controversies for future study. CONCLUSION: A composite of these 11 domains may give a more complete image of what surgical and nursing colleagues, patient families, and anesthesiologist partners expect of the pediatric anesthesiologist. Despite some overlap and interdependence between domains, this research may contribute to the creation of future educational curricula and provides domains for evaluation of professionalism in pediatric anesthesiology.


Assuntos
Anestesiologistas/normas , Anestesiologia/normas , Competência Clínica/normas , Pediatria/normas , Profissionalismo/normas , Estudos de Avaliação como Assunto , Feminino , Grupos Focais , Humanos , Masculino
19.
J Med Internet Res ; 19(2): e50, 2017 02 28.
Artigo em Inglês | MEDLINE | ID: mdl-28246067

RESUMO

BACKGROUND: The target sample size for clinical trials often necessitates a multicenter (center of excellence, CoE) approach with associated added complexity, cost, and regulatory requirements. Alternative recruitment strategies need to be tested against this standard model. OBJECTIVES: The aim of our study was to test whether a Web-based direct recruitment approach (patient-centric, PC) using social marketing strategies provides a viable option to the CoE recruitment method. METHODS: PC recruitment and Web-based informed consent was compared with CoE recruitment for a randomized controlled trial (RCT) of continuing versus stopping low-dose prednisone for maintenance of remission of patients with granulomatosis with polyangiitis (GPA). RESULTS: The PC approach was not as successful as the CoE approach. Enrollment of those confirmed eligible by their physician was 10 of 13 (77%) and 49 of 51 (96%) in the PC and CoE arms, respectively (P=.05). The two approaches were not significantly different in terms of eligibility with 34% of potential participants in the CoE found to be ineligible as compared with 22% in the PC arm (P=.11) nor in provider acceptance, 22% versus 26% (P=.78). There was no difference in the understanding of the trial as reflected in the knowledge surveys of individuals in the PC and CoE arms. CONCLUSIONS: PC recruitment was substantially less successful than that achieved by the CoE approach. However, the PC approach was good at confirming eligibility and was as acceptable to providers and as understandable to patients as the CoE approach. The PC approach should be evaluated in other clinical settings to get a better sense of its potential.


Assuntos
Internet , Seleção de Pacientes , Ensaios Clínicos Controlados Aleatórios como Assunto/métodos , Doenças Raras/diagnóstico , Doenças Raras/tratamento farmacológico , Adulto , Idoso , Feminino , Granulomatose com Poliangiite/diagnóstico , Granulomatose com Poliangiite/tratamento farmacológico , Humanos , Masculino , Pessoa de Meia-Idade , Prednisona/administração & dosagem , Inquéritos e Questionários
20.
Qual Health Res ; 27(6): 909-922, 2017 May.
Artigo em Inglês | MEDLINE | ID: mdl-27909251

RESUMO

The patient-centered medical home (PCMH) is a model of care that emphasizes the coordination of patient treatment among health care providers. Practice transformation to this model, however, presents a number of challenges. One of these challenges is getting the buy-in of all personnel to commit to making organizational changes in the journey to becoming a nationally recognized medical home. This study investigated internal messages of buy-in as communicated by practices transitioning to this type of care. Grounding itself in stakeholder theory, this study analyzed interviews with staff, administration, and practitioners from 20 medical practices in a mid-Atlantic state. The analysis revealed three overarching themes: (a) communication among staff that is open, consistent; (b) implementation of reinforcement techniques; and (c) access to a change implementer who encourages successful evolution. Discussion of these themes provides recommendations for communication approaches to organizational buy-in for medical practices hoping to become a PCMH.


Assuntos
Atitude do Pessoal de Saúde , Pessoal de Saúde/psicologia , Inovação Organizacional , Assistência Centrada no Paciente/organização & administração , Atenção Primária à Saúde/organização & administração , Adulto , Feminino , Humanos , Mid-Atlantic Region , Pessoa de Meia-Idade , Modelos Organizacionais
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