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1.
Qual Life Res ; 32(8): 2305-2317, 2023 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-36952075

RESUMO

PURPOSE: We developed and validated a measure assessing quality of life (QOL) through importance, attainability, and discrepancy of life goals among adolescents and young adults (AYA) with and without cancer. A specific goal-based QOL measure for AYA fills a critical gap in knowledge for AYA who are at a unique life stage, which may include shifts in priorities and goals. METHODS: Through review of our existing AYA databases on goals, the literature, and cognitive interviews we developed the MAYA-GQOL. Items were administered to AYA with cancer (on/off treatment) (n = 124) and healthy AYA controls (n = 103) aged 15-29 years old. Psychometric analyses for comparison with existing QOL measures and discrepancies in perceived importance/attainability of goals were examined. RESULTS: An item pool of 700 goals, based on prior research, was refined to 173 goals across nine categories: academic, administrative, body, health, job, leisure, interpersonal, intrapersonal, and religion. Validation between the MAYA-GQOL and existing QOL measures was supported. AYA survivors reported fewer overall current goals and fewer administrative, interpersonal, leisure, and religious goals. AYA survivors rated body goal importance significantly higher than healthy controls and intrapersonal goal importance significantly lower. Little discrepancy in importance and attainability across AYA was found. CONCLUSIONS: The MAYA-GQOL represents an innovative way of measuring QOL among AYA by focusing on the relative importance, attainability, and discrepancy of developmentally appropriate goals. The MAYA-GQOL can identify areas of resilience and competence via assessment of important and attainable goals and can further assess how AYA with chronic illness are functioning relative to peers on goal domains relevant to the AYA developmental period.


Assuntos
Neoplasias , Qualidade de Vida , Humanos , Adolescente , Adulto Jovem , Adulto , Qualidade de Vida/psicologia , Objetivos , Neoplasias/psicologia , Sobreviventes , Grupo Associado
2.
Pediatr Blood Cancer ; 69(3): e29537, 2022 03.
Artigo em Inglês | MEDLINE | ID: mdl-34971017

RESUMO

BACKGROUND: Neuroblastoma is the most common extracranial solid tumor in children. Those with high-risk disease are treated with multimodal therapy, including high-dose chemotherapy, stem cell transplant, radiation, and immunotherapy that have led to multiple long-term complications in survivors. In the late 1990s, consolidation therapy involved myeloablative conditioning including total body irradiation (TBI) with autologous stem cell rescue. Recognizing the significant long-term toxicities of exposure to TBI, more contemporary treatment protocols have removed this from conditioning regimens. This study examines an expanded cohort of 48 high-risk neuroblastoma patients to identify differences in the late effect profiles for those treated with TBI and those treated without TBI. PROCEDURE: Data on the study cohort were collected from clinic charts, provider documentation in the electronic medical record of visits to survivorship clinic, including all subspecialists, and ancillary reports of laboratory and diagnostic tests done as part of risk-based screening at each visit. RESULTS: All 48 survivors of BMT for high-risk neuroblastoma had numerous late effects of therapy, with 73% having between five and 10 late effects. TBI impacted some late effects significantly, including growth hormone deficiency (GHD), bone outcomes, and cataracts. CONCLUSION: Although high-risk neuroblastoma survivors treated with TBI have significant late effects, those treated without TBI also continue to have significant morbidity related to high-dose chemotherapy and local radiation. A multidisciplinary care team assists in providing comprehensive care to those survivors who are at highest risk for significant late effects.


Assuntos
Neuroblastoma , Irradiação Corporal Total , Protocolos de Quimioterapia Combinada Antineoplásica/uso terapêutico , Criança , Progressão da Doença , Humanos , Neuroblastoma/complicações , Transplante de Células-Tronco/efeitos adversos , Sobreviventes , Irradiação Corporal Total/efeitos adversos
3.
J Pediatr Psychol ; 47(10): 1096-1106, 2022 10 19.
Artigo em Inglês | MEDLINE | ID: mdl-35482609

RESUMO

OBJECTIVE: Fewer than one-third of childhood cancer survivors receive follow-up from an adult provider, and adolescent and young adults (AYAs) from structurally minoritized sociodemographic groups often face health disparities that can impact transition to adult-oriented care. The primary aim of this study was to determine the relation among sociodemographic factors, cumulative effects, and transition beliefs/expectations and goals, and the moderating role of health competence beliefs in AYA survivors of childhood cancer. METHODS: A total of 195 AYAs (aged 15-29) reported sociodemographic information, completed the Transition Readiness Inventory assessing positive beliefs/expectations and goals related to transition, and completed the Health Competence Beliefs Inventory assessing health perceptions, healthcare satisfaction, cognitive competence, and autonomy. A cumulative sociodemographic factor variable was computed to investigate the potential additive effects of multiple sociodemographic factors associated with disparities. T-tests, Pearson correlations, and multivariate linear regressions were used. RESULTS: Cumulative sociodemographic factors were not related to transition readiness, and insurance type was the only factor associated with health competence beliefs and transition readiness, such that AYAs with public insurance reported lower healthcare satisfaction, cognitive competence, and transition goals relative to those with private insurance. There were no interaction effects; however, health competence beliefs were significantly associated with transition beliefs/expectations and goals. CONCLUSION: Public insurance is a barrier to holding positive beliefs/expectations and goals about transition, yet other sociodemographic factors associated with risks for poor transfer were not related to transition readiness. Multi-level interventions to reduce disparities and improve transition readiness should target health competence beliefs and barriers created by insurance.


Assuntos
Sobreviventes de Câncer , Neoplasias , Transição para Assistência do Adulto , Adulto Jovem , Adolescente , Humanos , Sobreviventes/psicologia , Neoplasias/terapia , Neoplasias/psicologia
4.
Ann Behav Med ; 55(12): 1220-1230, 2021 11 18.
Artigo em Inglês | MEDLINE | ID: mdl-33674863

RESUMO

BACKGROUND: Despite the promise of mobile health (mHealth), engagement is often too low for durable health behavior change, and little is known regarding why certain individuals abandon mHealth tools. PURPOSE: Guided by a mHealth engagement framework, we evaluated contextual predictors of objective engagement with an app for adolescents and young adults (AYA) who survived cancer. METHODS: One hundred and ten AYA survivors (M age = 20.5, 43% female, 30% racial/ethnic minority) were randomized to receive a disease self-management app that delivered 1-2 tailored messages/day for 16 weeks, and contained a survivorship care plan (SCP). Demographic, disease, psychosocial, and setting characteristics were examined as predictors of three objective engagement outcomes: (a) % of active app days, (b) % of messages read, and (c) viewed SCP in the app versus not. A subsample (n = 10) completed qualitative interviews to further assess engagement barriers. RESULTS: Self-reported uninterrupted app access (ß = -0.56, p < .001), iPhone (vs. Android) ownership (ß = 0.30, p < .001), and receiving the intervention in the summer (ß = -0.20, p = .01) predicted more active days. Lower depressed mood (ß = -0.30, p = .047) and uninterrupted app access (ß = -0.50, p < .001) predicted more messages read. Qualitatively, technical glitches and competing priorities were described as engagement barriers, whereas certain types of messages (e.g., health goal messages) were perceived as engaging. Among participants who had uninterrupted app access (n = 76), higher baseline motivation to change, better health perceptions, using the app during the summer, and iPhone ownership predicted higher engagement. CONCLUSIONS: Findings demonstrate the importance of comprehensively assessing and planning for multi-level ecological determinants of mHealth engagement in future trials. CLINICALTRIALS.GOV IDENTIFIER: NCT03363711.


Assuntos
Sobreviventes de Câncer , Aplicativos Móveis , Neoplasias , Telemedicina , Adolescente , Adulto , Minorias Étnicas e Raciais , Etnicidade , Feminino , Humanos , Masculino , Grupos Minoritários , Neoplasias/terapia , Adulto Jovem
5.
Pediatr Blood Cancer ; 68(3): e28884, 2021 03.
Artigo em Inglês | MEDLINE | ID: mdl-33416214

RESUMO

BACKGROUND: Self-management interventions for adolescent and young adult (AYA) survivors of childhood cancer are needed. The present study reports on the acceptability and feasibility of delivering survivorship care plans (SCPs) and an accompanying app to AYA. PROCEDURE: AYA (n = 224) ages 15-29 who completed treatment for cancer were randomized and received a digital SCP only or an SCP plus a mobile app intended to enhance self-management. For 16 weeks, the app delivered one to two daily messages complementing information in their SCP and tailored based on age, treatment, and health goal. Data are presented on feasibility, self-reported acceptability (including satisfaction and perceived benefits) and its relationship to app engagement (for those in app group), and feedback from qualitative interviews conducted with 10 AYA. RESULTS: The SCP and app proved feasible as evidenced by high recruitment and retention, access to technology, time analysis, moderate app engagement, and minimal technical issues. However, 12% reported never reading the SCP and 8% never used the app. The app and SCP were acceptable to AYA, and SCP acceptability ratings did not differ between groups. For those with the app, acceptability was positively related to message engagement. AYA recommended enhanced individualization and design features of the SCP and app. CONCLUSIONS: Results support the use of tailored SCPs and mobile health interventions for most AYA, as well as the need for further refinement and research. Delivery of SCPs and digital interventions are acceptable and feasible to AYA survivors, and may help promote health-related knowledge and survivorship self-management.


Assuntos
Sobreviventes de Câncer/estatística & dados numéricos , Promoção da Saúde , Aplicativos Móveis/estatística & dados numéricos , Neoplasias/prevenção & controle , Planejamento de Assistência ao Paciente/normas , Sobrevivência , Adolescente , Adulto , Criança , Estudos de Viabilidade , Feminino , Seguimentos , Humanos , Masculino , Motivação , Prognóstico , Taxa de Sobrevida , Adulto Jovem
6.
J Pediatr Nurs ; 61: 292-297, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34450469

RESUMO

PURPOSE: Despite American Academy of Pediatrics recommendations that adolescents receive healthcare transition (HCT) services starting at age 12, few do. Electronic health record-based clinical decision support (CDS) tools are effective at promoting healthcare provider adherence to clinical guidelines. This study's purpose was to increase provider HCT services engagement through implementation of a transition-specific CDS and participation in a transition-focused Learning Collaborative (LC). DESIGN AND METHODS: Three pediatric primary care sites of an urban, academic medical center implemented a transition CDS tool for ≥14-year-olds. Previously, one site had a version for ≥16-year-olds. Two sites participated in a LC with Plan-Do-Study-Act cycles targeting HCT services engagement, measured by CDS use and practice-level guideline implementation. RESULTS: From July 2018 through June 2019, providers at LC-participating sites engaged in HCT services at 8.0% (n = 480) and 5.3% (n = 145) of eligible patient visits compared to the control's 3.1% (n = 69). Engagement was highest for ≥18-year-olds at the LC-participating sites, 26.0% (n = 263) and 12.0% (n = 80), compared to the control's 7.2% (n = 31). After expanding from ≥16 to ≥14-year-olds, engagement decreased by 9.5% at ≥16-year-old visits. LC-participating sites reported increased HCT guideline adherence. CONCLUSIONS: Implementation of a transition-specific CDS with LC participation increased provider HCT services engagement and practice-level guideline implementation. Expansion to younger adolescents contributed to decreased engagement for older patients. Future research should assess opportunities to improve uptake and patient outcomes of transition CDS engagement. PRACTICE IMPLICATIONS: Quality improvement activities and transition clinical decision supports can improve provider engagement in recommended transition services for adolescents and young adults.


Assuntos
Sistemas de Apoio a Decisões Clínicas , Pediatria , Transição para Assistência do Adulto , Adolescente , Criança , Humanos , Atenção Primária à Saúde , Melhoria de Qualidade , Adulto Jovem
7.
Psychooncology ; 29(1): 164-172, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31713265

RESUMO

PURPOSE: Despite cure, adolescents and young adults (AYA) who complete cancer treatment remain at risk for numerous physical and psychological late effects. However, engagement in recommended follow-up care, knowledge of cancer treatment history and risks, and adoption of health promoting behaviors are often suboptimal. The pilot randomized controlled trial assessed the feasibility and acceptability of a text messaging intervention (THRIVE; Texting Health Resources to Inform, motiVate, and Engage) designed to promote well-being, and health knowledge and behaviors. METHODS: Sixty-one AYA who recently completed cancer therapy enrolled and were randomized to receive THRIVE (n = 31) or an AYA survivor handbook (n = 30). Participants from both groups completed baseline measures and follow-up surveys 16 weeks later. AYA randomized to THRIVE received one to two health-related text messages per day over 16 weeks. RESULTS: THRIVE demonstrated a high level of acceptability and feasibility. Exploratory analyses highlighted promising improvements in knowledge, fruit/vegetable intake, and perceptions of health vulnerability. CONCLUSIONS: Text messaging is an acceptable and feasible intervention approach for improving well-being and health of AYA survivors. Future research is needed to test the impact of text messaging in a larger trial, including whether or not such an intervention can improve clinical outcomes, such as survivors' engagement in follow-up care.


Assuntos
Sobreviventes de Câncer/psicologia , Promoção da Saúde/métodos , Neoplasias/reabilitação , Envio de Mensagens de Texto/estatística & dados numéricos , Adolescente , Estudos de Viabilidade , Feminino , Humanos , Masculino , Atenção Plena/métodos , Motivação , Neoplasias/psicologia , Apoio Social , Adulto Jovem
8.
Pediatr Blood Cancer ; 66(8): e27793, 2019 08.
Artigo em Inglês | MEDLINE | ID: mdl-31099145

RESUMO

PURPOSE: There are limited reports describing transition of young adult childhood cancer survivors (CCS) from pediatric to adult-focused survivorship care. The purpose of this study was to characterize current transitional care practices in the United States. PROJECT DESCRIPTION: An online survey was sent to one preselected respondent at 163 Children's Oncology Group member institutions in the United States. Data were collected about (i) the availability and type of long-term follow-up services for adult CCS and (ii) policies and procedures for transitioning. Logistic regression was used to evaluate factors related to care for CCS. RESULTS: The response rate was 60% (97/163). Eighty-one respondents (84%) represented centers with specialized pediatric-focused CCS programs. Thirty-nine percent (38/97) of programs delivered specialized transitional care for adult CCS. Adult-centered care was delivered in both pediatric (39%, 15/38) and adult oncology clinics (39%, 15/38). The most common perceived transition barriers were lack of available partnering adult providers and adult providers' lack of knowledge regarding CCS. The larger the program in terms of new diagnoses, the more likely they were to offer formal transitional care (<50 vs >200: odds ratios [OR] 20.0; 95% CI 3.2, 100.0, P = 0.004). CONCLUSIONS: A variety of models are utilized for delivering care to adult CCS. Our results suggest that interventions to establish effective partnerships with adult providers on appropriate care of CCS may facilitate expanded availability of these services.


Assuntos
Sobreviventes de Câncer/estatística & dados numéricos , Atenção à Saúde/normas , Neoplasias/terapia , Padrões de Prática Médica/normas , Prática Profissional/tendências , Inquéritos e Questionários , Cuidado Transicional/normas , Adolescente , Adulto , Criança , Atenção à Saúde/organização & administração , Feminino , Seguimentos , Humanos , Masculino , Padrões de Prática Médica/organização & administração , Prognóstico , Taxa de Sobrevida , Sobrevivência , Cuidado Transicional/organização & administração , Estados Unidos , Adulto Jovem
9.
J Pediatr Nurs ; 47: 136-141, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31129412

RESUMO

PURPOSE: Children's hospitals must provide developmentally appropriate care to increasing numbers of young adults with complex healthcare needs as they transition to adult-oriented care. This article describes the patients, service, and short-term outcomes of an interprofessional healthcare transition (HCT) consult team comprised of nurses, social workers, a community health worker, and physicians. DESIGN AND METHODS: The Adult Consult Team's tiered population framework stratifies patients by medical complexity. The team coordinates HCT services for patients with the highest complexity. Patients at least 18 years old are eligible if they have at least two specialists or an intellectual or developmental disability (IDD). Through a comprehensive medical and psychosocial assessment, the team prepares patients/families for adult-oriented healthcare. RESULTS: The Adult Consult Team received 197 referrals from July 2017 to June 2018. Patients had at least two specialists (73%), IDD (71%), technology dependence (e.g., gastrostomy tube, 37%) and Medicaid insurance (57%). The team assisted patients seen in its outpatient clinic with navigating mental health services (39%), insurance issues (13%), IDD services (15%), and the guardianship process (37%) and creating comprehensive care plans. CONCLUSIONS: The Adult Consult Team transferred 30 patients with medical complexity to adult primary and specialty care, significantly improving pediatric inpatient and outpatient capacity for pediatric-aged patients. A broad range of young adult medical, psychosocial, legal, educational, and vocational needs were addressed. PRACTICE IMPLICATIONS: An interprofessional team approach can help large pediatric healthcare systems address the multi-faceted needs of patients who are medically and psychosocially complex as they enter adulthood.


Assuntos
Deficiências do Desenvolvimento , Equipe de Assistência ao Paciente/organização & administração , Encaminhamento e Consulta , Transição para Assistência do Adulto/organização & administração , Adolescente , Feminino , Humanos , Masculino
10.
J Cancer Educ ; 33(5): 1075-1081, 2018 10.
Artigo em Inglês | MEDLINE | ID: mdl-28299542

RESUMO

This study aimed to assess college providers' basic knowledge of the health risks of young adult cancer survivors (YAS) and related care guidelines and to determine whether an educational in-service is an effective platform for increasing college health providers' knowledge about survivorship care at a large university health center. During phase 1, staff from college health centers and office of disabilities in the Philadelphia area (n = 40 staff members from 24 colleges/universities) completed a needs assessment on their experiences with YAS and preferences for education and care coordination. During phase 2, a 1-h educational in-service, informed by results of the survey, was provided to 18 health center medical providers. While most providers indicated that YAS are at risk for chronic health conditions because of cancer treatment, nearly all were unfamiliar with the content of published long-term follow-up guidelines for cancer survivorship. Over half did not have knowledge of cancer survivorship services in their area. All respondents were interested in more education on cancer survivorship care. Attendees of the in-service increased their knowledge of survivorship follow-up guidelines, awareness of local survivorship resources, and comfort with caring for YAS at posttest relative to baseline. The in-service was highly acceptable to providers and feasible to implement. College providers had little baseline knowledge of cancer survivorship guidelines, but were motivated to obtain more information. Through an educational in-service, college health providers may be better equipped to provide acute and longitudinal survivorship care to a vulnerable population who are at risk for inadequate engagement in risk-based follow-up care.


Assuntos
Sobreviventes de Câncer , Competência Clínica , Serviços de Saúde para Estudantes , Universidades , Continuidade da Assistência ao Paciente , Feminino , Humanos , Capacitação em Serviço , Masculino , Avaliação das Necessidades , Pennsylvania , Guias de Prática Clínica como Assunto , Inquéritos e Questionários , Adulto Jovem
11.
J Pediatr Psychol ; 42(9): 983-994, 2017 10 01.
Artigo em Inglês | MEDLINE | ID: mdl-29046041

RESUMO

Objective: The development of the Transition Readiness Inventory (TRI) item pool for adolescent and young adult childhood cancer survivors is described, aiming to both advance transition research and provide an example of the application of NIH Patient Reported Outcomes Information System methods. Methods: Using rigorous measurement development methods including mixed methods, patient and parent versions of the TRI item pool were created based on the Social-ecological Model of Adolescent and young adult Readiness for Transition (SMART). Results: Each stage informed development and refinement of the item pool. Content validity ratings and cognitive interviews resulted in 81 content valid items for the patient version and 85 items for the parent version. Conclusions: TRI represents the first multi-informant, rigorously developed transition readiness item pool that comprehensively measures the social-ecological components of transition readiness. Discussion includes clinical implications, the application of TRI and the methods to develop the item pool to other populations, and next steps for further validation and refinement.


Assuntos
Sobreviventes de Câncer/psicologia , Transição para Assistência do Adulto/organização & administração , Adaptação Psicológica , Adolescente , Análise Fatorial , Feminino , Humanos , Masculino , Determinação da Personalidade , Psicometria , Reprodutibilidade dos Testes , Adulto Jovem
12.
Support Care Cancer ; 24(2): 823-832, 2016 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-26190361

RESUMO

PURPOSE: Adolescents and young adults (AYA) are a developmentally distinct cancer group, vulnerable to psychosocial late effects and with a range of unmet psychosocial needs. We sought to better understand psychosocial care needs and program preferences to inform development of more easily accessible and effective AYA psychosocial programs. METHODS: AYA on and off treatment for cancer (n = 111, ages 12-25 years) were approached during an outpatient clinic visit and completed a survey as part of a quality improvement initiative. The survey comprised an open-ended question on challenges related to cancer and treatment and closed-ended questions on access to and preference for various services and programs. Qualitative analyses were used to summarize themes for most significant challenges, and descriptive statistics were used for closed-ended questions. RESULTS: Most common themes for challenges included treatments and associated physical changes, barriers to pursuit of academic/vocational goals, and social isolation. For preferred program focus, AYA ranked highest increasing strength and endurance/reintegration into sports and dealing with physical changes resulting from treatment. AYA's preferred modalities for program delivery were one-on-one/in person and message boards/Facebook. Most of the sample indicated that lack of awareness prevented their accessing available programs. CONCLUSIONS: New information was identified that can be used to address access barriers and to offer AYA psychosocial programs in formats that might improve interest and accessibility. Ongoing evaluation of AYA psychosocial programs is recommended to determine acceptability, feasibility, and effectiveness to meet the evolving needs of AYA patients with cancer.


Assuntos
Avaliação das Necessidades , Neoplasias/psicologia , Preferência do Paciente/psicologia , Adolescente , Adulto , Criança , Feminino , Humanos , Masculino , Qualidade de Vida , Adulto Jovem
13.
J Pediatr Nurs ; 30(1): 126-32, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-25450439

RESUMO

Over 90% of children with chronic conditions survive into adulthood necessitating primary care teams to care for adults with pediatric-onset chronic conditions. This study explores practice supports and barriers to care for this population via qualitative techniques. Using in depth interviews with twenty-two healthcare providers practice supports identified include: formalizing intake processes, interoperable electronic medical records, and leveraging care coordination. Barriers identified included: definition of the medical team, lack of appropriate medical records, time and administrative burden, lack of training, and financial constraints. Themes may be utilized to design interventions and improve care coordination for patients with pediatric-onset chronic conditions.


Assuntos
Doença Crônica/terapia , Atenção à Saúde/organização & administração , Atenção Primária à Saúde/métodos , Transição para Assistência do Adulto/organização & administração , Adolescente , Idade de Início , Atitude do Pessoal de Saúde , Doença Crônica/epidemiologia , Doença Crônica/psicologia , Estudos Transversais , Feminino , Humanos , Entrevistas como Assunto , Masculino , Avaliação das Necessidades , Avaliação de Resultados da Assistência ao Paciente , Assistência Centrada no Paciente/organização & administração , Pediatria , Philadelphia , Pesquisa Qualitativa , Adulto Jovem
14.
Acad Pediatr ; 24(6): 883-888, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38609014

RESUMO

PROBLEM: Workplace mistreatment is a contributor to resident burnout; understanding and intervening against mistreatment is one key tool in mitigating burnout. While Accreditation Council for Graduate Medical Education (ACGME) survey data alerts programs to general mistreatment trends, those data are not detailed enough to inform local interventions. Our team designed and implemented a Challenging Interactions Reporting Tool (CIRT) to characterize the experiences of our trainees at a granular level and to inform targeted interventions for improvement. APPROACH: Our CIRT was offered to 158 residents in August 2020 via REDCap. Residents submit electronic reports that are reviewed weekly by program leaders who develop action plans for each report. Reporters can identify themselves or can choose to remain anonymous. When "hot spots" for mistreatment are identified in our hospital, we implement a targeted systems-level intervention. OUTCOMES: Residents filed 275 reports between August 2020 and December 2022. Reports represented all training environments and involved all interprofessional members of clinical teams. Residents reported awareness of, use of, and satisfaction with the tool. NEXT STEPS: Our program created the CIRT as a tool to inform local interventions for improving the safety of our clinical learning environment. We continue to disseminate our tool across our hospital's GME programs and are now measuring the impact of our interventions.


Assuntos
Esgotamento Profissional , Internato e Residência , Humanos , Esgotamento Profissional/prevenção & controle , Educação de Pós-Graduação em Medicina/métodos , Relações Interprofissionais , Pediatria/educação , Local de Trabalho , Melhoria de Qualidade , Inquéritos e Questionários
15.
J Adolesc Health ; 75(1): 107-114, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38520432

RESUMO

PURPOSE: Youth-onset type 2 diabetes (T2D) is increasingly common and is often diagnosed shortly before transition from pediatric to adult care. Little is known about the experience of emerging adults (EAs) with T2D and the readiness, barriers, and facilitators to transition. This study sought to describe the illness experience of EAs with T2D and perceptions about transition, and explore themes by "transition readiness," measured by the Transition Readiness Assessment Questionnaire (TRAQ). METHODS: In this mixed-methods study, we conducted semi-structured interviews with EAs with T2D using a guide grounded in the health belief model, administered the TRAQ, and collected disease metrics from the electronic medical record. We developed a coding scheme using a directed content-analysis approach and triangulated qualitative and quantitative data to compare themes stratified by mean TRAQ score. RESULTS: Participants described modifying factors like adjusting to life with a chronic illness and coping with mental health issues as critical elements of the illness experience that influence transition. Individual beliefs emerged including the perceived risk of disease complications being informed by experience of family members, self-efficacy in diabetes care hinging on the ability to be highly organized, and transition as a daunting obstacle with numerous emotional and logistical barriers. Participants emphasized the need for support from caregivers and providers throughout transition. Themes did not vary significantly by TRAQ score. DISCUSSION: Experiences of EAs with T2D suggest more assistance is needed in the transition period to address factors such as mental health, organizational skills, and identifying support people to facilitate care.


Assuntos
Diabetes Mellitus Tipo 2 , Transição para Assistência do Adulto , Humanos , Diabetes Mellitus Tipo 2/terapia , Diabetes Mellitus Tipo 2/psicologia , Masculino , Feminino , Adulto Jovem , Adolescente , Adaptação Psicológica , Adulto , Inquéritos e Questionários , Entrevistas como Assunto , Pesquisa Qualitativa
16.
Cureus ; 16(1): e52983, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-38406009

RESUMO

OBJECTIVE: The study aims to elicit perceived benefits and downsides of X+Y scheduling for combined Internal Medicine-Pediatrics (Med-Peds) residents via focus groups. METHODS: Five focus groups were conducted with Med-Peds residents in participating programs which utilized X+Y scheduling. Onefocus group was held per participating institution. Each focus group was facilitated by a chief resident from a different participating institution. Questions were developed by the study team after a review of the literature and local experience with X+Y scheduling and included open-ended questions. Focus groups were recorded and transcribed. Transcripts were reviewed by study team members, and representative themes and quotes were presented. The main outcome was to evaluate the perceived benefits and downsides of X+Y scheduling for Med-Peds. RESULTS: Results from four of the five focus groups were fully reviewed. Themes regarding the benefits of X+Y scheduling included (1) improved inpatient and outpatient experience, (2) predictability in schedule which improved wellness, and (3) longitudinal time for career exploration. Downsides of X+Y scheduling were highlighted as well including (1) condensing too many experiences into Y time and (2) challenges that exist when categorical medicine and pediatrics programs use different block schedules. CONCLUSIONS: X+Y schedules create potential solutions for longstanding barriers to medical education and notably conflict with inpatient and outpatient responsibilities. Our data shows similar benefits to X+Y scheduling for combined residents as for their categorical colleagues and sheds light on some unique considerations for combined programs and trainees. Additional studies should continue to assess the effect of X+Y scheduling on our combined trainees.

17.
JMIR Pediatr Parent ; 6: e48924, 2023 Dec 13.
Artigo em Inglês | MEDLINE | ID: mdl-38100579

RESUMO

Background: Adolescents and young adults with sickle cell disease (SCD) transitioning from pediatric to adult health care face a high-risk period associated with increased use of acute health care services and mortality. Although 59% of American citizens report using the internet for health care information, the quality of web-based, patient-facing resources regarding transition in SCD care has not been evaluated. Objective: This study aimed to evaluate the quality and readability of web-based health information on SCD, especially as it pertains to the transition to adulthood for inidividuals with SCD. The study also compared the readability and content scores of websites identified in 2018 to those from 2021 to assess any change in quality over time. Methods: Keywords representing phrases adolescents may use while searching for information on the internet regarding transition in SCD care, including "hydroxyurea" and "SCD transition," were identified. A web-based search using the keywords was conducted in July 2021 using Google, Yahoo, and Bing. The top 20 links from each search were collected. Duplicate websites, academic journals, and websites not related to SCD health care transition were excluded. Websites were categorized based on the source: health department, hospital or private clinician, professional society, and other websites. Websites were assessed using Health On the Net Foundation code of conduct (HONcode), Flesch Reading Ease (FRE), Flesch-Kincaid Grade Level (FGL), Ensuring Quality Information for Patients (EQIP), and a novel SCD content checklist (SCDCC). EQIP and SCDCC scores range from 0- to 100. Each website was reviewed by 2 research assistants and assessed for interrater reliability. Descriptive statistics were calculated. Results: Of the 900 websites collected, 67 (7.4%) met the inclusion criteria: 13 health department, 7 hospital or private clinician, 33 professional society, and 14 other websites. A total of 15 (22%) out of 67 websites had HONcode certification. Websites with HONcode certification had higher FRE and EQIP scores and lower FGL scores than those without HONcode certification, reflecting greater readability. Websites without HONcode certification had higher SCDCC scores, reflecting greater clinical content. Only 7 (10%) websites met the National Institutes of Health recommendation of a seventh-grade or lower reading level. Based on EQIP scores, 6 (9%) websites were of high quality. The mean SCDCC score was 20.60 (SD 22.14) out of 100. The interrater reliability for EQIP and SCDCC ratings was good (intraclass correlation: 0.718 and 0.897, respectively). No source of website scored significantly higher mean EQIP, FRE, FGL, or SCDCC scores than the others (all P<.05). Conclusions: Although seeking health care information on the web is very common, the overall quality of information about transition in SCD care on the internet is poor. Changes to current web-based health care information regarding SCD care transitions would benefit transitioning youth by providing expectations, knowledge, skills, and tools to increase self-efficacy.

18.
Cureus ; 14(9): e29743, 2022 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-36340526

RESUMO

The X + Y scheduling approach, or block scheduling, is common among internal medicine residency programs. With the beginning of a pilot program through the American College of Graduate Medical Education in 2018, pediatrics and internal medicine-pediatrics (Med-Peds) residency programs have been able to adopt X + Y scheduling as well. The X + Y scheduling approach presents unique challenges and opportunities for combined Med-Peds residencies. This paper describes an early experience with X + Y scheduling in Med-Peds residencies and describes practical considerations for Med-Peds programs considering or planning a transition to the X + Y schedule. These considerations include strategies for gaining stakeholder support; selecting the appropriate block structure; opportunities for designing the ambulatory curriculum; and maximizing the clinical benefit in the residency continuity clinic.

20.
J Adolesc Health ; 65(4): 476-482, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-31277993

RESUMO

PURPOSE: Transitional age adults (18-24 years) are the fastest growing cohort of patients in children's hospitals across the nation. The purpose of the study was to standardize pediatric to adult healthcare transfers of complex adult patients through a tiered and multimodal population-based intervention. METHODS: The Multidisciplinary Intervention Navigation Team (MINT) was developed to decrease variations in pediatric to adult medical transitions. System-level goals were to (1) increase provider and leadership engagement, (2) increase transition tools, (3) increase use of electronic medical record-based clinical decision supports, (4) improve transition practices through development of transition policies and clinical pathways; (5) increase transition education for patients and caregivers; (6) increase the adult provider referral network; and (7) implement an adult transition consult service for complex patients (MINT Consult). RESULTS: Between July 2015 and March 2017, MINT identified 11 transition champions, increased the number of divisions with drafted transition policies from 0 to 7, increased utilization of electronic medical record-based transition support tools from 0 to 7 divisions, held seven psychoeducational events, and developed a clinical pathway. MINT has received more than 70 patient referrals. Of patients referred, median age is 21 years (range, 17-43); 70% (n = 42) have an intellectual disability. Referring pediatric providers (n = 25) reported that MINT helped identify adult providers and coordinate care with other Children's Hospital of Philadelphia specialists (78%); and that MINT saved greater than 2 hours of time (48%). CONCLUSIONS: MINT improved the availability, knowledge, and use of transition-related resources; saved significant time among care team members; and increased provider comfort around transition-related conversations.


Assuntos
Doença Crônica , Hospitais Pediátricos/organização & administração , Equipe de Assistência ao Paciente , Transição para Assistência do Adulto/normas , Adolescente , Adulto , Comunicação , Registros Eletrônicos de Saúde/normas , Feminino , Humanos , Masculino , Educação de Pacientes como Assunto , Encaminhamento e Consulta , Adulto Jovem
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