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1.
Artigo em Inglês | MEDLINE | ID: mdl-39009946

RESUMO

PURPOSE OF REVIEW: Transition of care for pediatric patients with inflammatory bowel diseases (IBD) is a continuous, dynamic process that takes place over several years with a coordinated approach executed by a multidisciplinary team. We review the concepts, tools, and research in effective transitioning and transfer of care for adolescent/young adult patients with IBD. RECENT FINDINGS: Given the constraints within the healthcare system, effective transitioning can be challenging to implement in everyday clinical practice. Different barriers include resources and expertise in effective transitioning by pediatric and adult gastroenterology healthcare providers and the impact of non-gastrointestinal issues facing young adult patients who are learning to manage and coordinate all aspects of their medical care and health maintenance. Factors that facilitate successful care transitioning and transfer include structured transitioning programs, utilization of validated transition checklists, and IBD medical summaries. Proactive transitioning by pediatric gastroenterologists in partnership with their emerging young adult patients with IBD leads to better clinical and psychosocial outcomes and ultimately, effective transfer of care to adult gastroenterology. By utilizing utilize comprehensive transition assessment tools and medical summaries in partnership with their patients, pediatric and adult gastroenterology teams can better prepare patients as they transfer to independent care and health maintenance.

2.
BMC Vet Res ; 20(1): 17, 2024 Jan 08.
Artigo em Inglês | MEDLINE | ID: mdl-38191395

RESUMO

BACKGROUND: The mare-foal relationship is essential for the well-being and growth of a foal. Mare's milk provides a foal with nutrients, protective immunity, and microbes. Within the first two weeks of life, there is a risk for a foal to suffer from diarrhea, particularly "foal heat diarrhea" which happens at about the time of a mare's estrus cycle but is more likely due to transitions in the microbiota in the foal's gastrointestinal (GI) tract. We hypothesized that this GI microbiota transition could be caused by changes in lysozyme and microbial populations in the mare's milk. To test this hypothesis, fifteen mare-foal pairs were followed in the first 15 days post-foaling. Every other day milk was collected from mares and rectal swabs were collected from foals. Lysozyme activity in the mare's milk was measured using a fluorescence assay. Microbial DNA was isolated from the milk and swabs and the V4 domain of 16 S rRNA genes were PCR amplified and sequenced using Illumina MiSeq technology. Microbial populations were analyzed using DADA2 and phyloseq within R. RESULTS: Mare's milk lysozyme activity peaked for samples at Day 1 and levels dropped to 72.5% of Day 1 activity by Day 15; however, microbial populations in the mare's milk did not vary significantly over the two weeks. Furthermore, levels of microbial diversity found in foal rectal swabs were initially similar to microbial diversity seen in mare's milk; however, over the first fifteen days, diversity increased for the foal rectal swab microbiota and swab microbial populations differed from milk microbes. A transition occurred shifting from microbes from the phylum Proteobacteria early in rectal swabs to those primarily from the phyla Firmicutes and Bacteroidota after the first few days post-foaling. These phyla contained several families and genera of microbes that promote utilization of milk components in healthy gut transition. Microbial abundance levels correlated more with days post-parturition than with lysozyme activity and mare's milk microbial populations. CONCLUSIONS: The findings suggest that much of the microbial populations responsible for the transition of the foal's gut comes from sources outside of mare's milk species and levels of lysozyme activity.


Assuntos
Microbioma Gastrointestinal , Microbiota , Humanos , Animais , Feminino , Cavalos , Leite , Muramidase , Diarreia/veterinária
3.
Eur J Pediatr ; 183(3): 1145-1152, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37843612

RESUMO

Reliable height measurement plays a pivotal role in evaluating the efficacy of costly growth hormone (GH) therapy in children. Currently, regularly outpatient clinic visits are needed to accurately measure height. The outpatient clinic visits are time-consuming for parents as well for health care professionals. This observational study aimed to investigate the validity of parentally performed height measurements compared to height measurements in the outpatient setting. An observational study was performed at the outpatient clinic of Amalia's Children's Hospital Nijmegen. A portable stadiometer (PS) was developed for height measurements at home. Measurements with the PS were performed by the researcher (PSR) and parents/caregivers (PSP). Measurements performed with the electronic digital ruler (EDS) were considered as the gold standard. The parents were potentially unblinded for the gold standard measurement (EDS). Descriptive statistics, Wilcoxon signed-rank, and Pearson's correlation tests were performed. The Bland-Altman plots were made to illustrate the correlation of the PSR or PSP with the gold standard. The correlation between the height measurements with PSR or PSP compared to the EDS was substantial (PSR: r = 0.9998, R2 = 0.9996, P < 0.001; PSP: r = 0.9998, R2 = 0.9995, P < 0.001). However, a statistically significant underestimation of the PSR and PSP was observed (P < 0.001). The mean difference of the PSR and PSP was respectively - 0.21 cm ± 0.52 SD and - 0.30 cm ± 0.62 SD in comparison to the EDS. The Bland-Altman plots illustrated that 95% of the PSR measurements were between - 1.03 and 0.60 cm and 95% of the PSP measurements were between - 1.26 and 0.66 cm compared to the EDS. CONCLUSION: We found a strong correlation between the PSR or PSP and the EDS, with only a minor underestimation of approximately 0.2-0.3 cm. In our opinion, this underestimation is clinically irrelevant as it does not result in an adjustment in GH dose. To conclude, parental height measurements could be a promising tool as it partially replaces outpatient clinic visits needed for measurements of height. Further studies are required to confirm this statement. WHAT IS KNOWN: • The immense impact of the coronavirus disease 2019 (COVID-19) pandemic on health care has increased telemedicine worldwide. For adequate integration of telemedicine in paediatric growth hormone treatment, reliable height and weight measurements in the home setting are required. • Earlier studies have shown that parents are capable to reliable perform height measurements in healthy children. WHAT IS NEW: • To our knowledge, this is the first study to show a strong correlation between the height measurements with a portable stadiometer by parents and those made with the electronic digital ruler (gold standard) in children treated with growth hormone. There was only a minor underestimation of approximately 0.2-0.3 cm, which we anticipated to be clinically irrelevant. • Therefore, home height measurements can at least partly replace costly outpatient visits for children being treated with growth hormone as part of an uncomplicated course. Moreover, these results may also be promising for implementation in other paediatric populations besides children treated with growth hormone.


Assuntos
Estatura , Hormônio do Crescimento , Humanos , Criança , Hormônio do Crescimento/uso terapêutico , Pais , Instituições de Assistência Ambulatorial , Hospitais
4.
J Adv Nurs ; 80(5): 1719-1731, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-37983863

RESUMO

BACKGROUND: Dying well at home usually requires the help and assistance of an informal caregiver. This role is usually unpaid, wide-ranging and oftentimes demanding. From diagnosis to death of a loved one, informal caregivers can experience one and frequently numerous transitions, however, little is known about this process. The purpose of this scoping review is to chart, explore and understand caregivers' experiences of transitioning when providing end-of-life care. A preliminary search of the literature indicated a paucity of research highlighting a notable absence of caregiver's perspectives and acknowledgements of the support they need to ensure successful transitions during this time. Consequently, this review has the potential to make a valuable contribution to the literature. METHODS: Arksey and O'Malley's (2005) framework, further enhanced by Levac et al. (2010) and Peters et al. (2020) was used to conduct this scoping review. The Extension for Scoping Reviews (PRISMA-ScR) guided reporting. A systematic search of the databases PUBMED, PsychINFO, CINAHL, EMBASE, and Web of Science and a selection of grey literature was undertaken from the year 1990 to date by two researchers. Titles and abstracts of the literature identified were screened and finally, a narrative synthesis of 11 articles was undertaken to answer the following research question: What is known from the literature about informal caregivers' transitions when caring for a dying person in the home? CONCLUSIONS: Current knowledge on this topic is limited; however, from this review, two main themes were identified: 'Challenges arising during transitioning' with subthemes of burden of care and fading away. The second theme 'Coping strategies' comprised subthemes of meaning-making, seeking normality and hope. This evidence may support the development of transitional care interventions in the future and improve patient and caregiver outcome measures and experiences to inform a larger research study exploring this phenomenon. PATIENT OR PUBLIC CONTRIBUTION: N/A as this is a Scoping Review. WHAT THIS PAPER CONTRIBUTES TO THE WIDER GLOBAL COMMUNITY: An understanding of the experiences of transitioning when caring for a loved one dying at home could help mitigate challenges informal caregivers face when providing end-of-life care in the home. While informal caregivers are crucial to support people who want to die at home, the role is often invisible and family carers need support and recognition to reduce the burden of care and challenges they experience as they transition in their role.


Assuntos
Cuidadores , Assistência Terminal , Humanos , Capacidades de Enfrentamento , Narração
5.
J Environ Manage ; 358: 120907, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38657410

RESUMO

The rapid transition of agricultural systems substantially affects residential and industrial land use systems in rural areas, often generating spatiotemporal trade-offs between residential and industrial functions and producing considerable ecological impacts, which has thus far not been well understood. We conduct an indicator-based assessment of transitioning agriculture systems, and then links the transitioning agricultural systems to trade-offs between residential and industrial functions from 2005 to 2020 by using a case study-the metropolitan suburbs of Beijing, China. Also, the associated ecological impacts of the trade-offs are characterized based on the calculation of the ecological quality index (EQI) and ecological contribution rate. The results show that trade-offs between residential and industrial functions in the metropolitan suburbs have gradually adapted to the different agricultural systems in transition, which can be characterized by increasing industrial function as well as declining residential function, together with the diversification of land use into a mixed pattern. Additionally, along with the transitioning process comes a U shape of the ecological quality curve, which indicates that relentless industrial sprawl into regions where the agricultural system has a low capacity for technology, as well as decay in rural areas attributed to a rural exodus and industrial decline in semi-subsistence agricultural areas, even cause ecological degradation. In general, trade-offs between residential and industrial functions (especially for the non-agricultural production function) in rural areas could partially and temporally generate unfavorable ecological impacts, but it seems to be a favorable phenomenon to promote ecological quality in the long term. Therefore, to achieve rural sustainable planning, it is necessary for land use management to observe the trade-offs between residential and industrial functions while avoiding negative impacts, such as low-density land use patterns, disordered land use functions, and eco-environmental deterioration. Such effective strategies can contribute to the feasible implementation of policies aiming to achieve the compatible development of liveable residences, highly efficient industrial production, and eco-friendly operations in rural areas.


Assuntos
Agricultura , China , Indústrias , Conservação dos Recursos Naturais , População Rural , Ecologia
6.
J Clin Psychol ; 80(6): 1345-1364, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38568157

RESUMO

OBJECTIVE: Little research explores military perspectives on medical disability-related transition. A qualitative study sought to understand transition experiences of United States military Service members found unfit for duty following medical and physical evaluation boards (MEBs and PEBs). METHODS: Confidential telephone interviews were conducted with 25 current and prior Service members. Participants were asked to share their experiences before, during, and after the MEB and PEB processes. Interview questions explored (1) health conditions that prompted the medical disability evaluation, (2) reactions to being recommended for separation, (3) transition-related stress and challenges, and (4) coping strategies. Salient themes were identified across chronological narratives. RESULTS: Participants expressed that debilitating physical (e.g., injury) and/or mental (e.g., post-traumatic stress disorder) illnesses prompted their medical evaluation. In response to the unfit for duty notice, some participants reported emotional distress (e.g., anxiety, anger) connected to uncertainty about the future. Other participants reported relief connected to a sense of progression toward their medical disability claim status. Transition stress included the length of the MEB/PEB process, impact of the COVID-19 pandemic on the process, financial stress, impact on family life, and compounded effect of these stressors on emotional distress, including depression and suicidal thoughts. Participants reported using adaptive (e.g., psychotherapy) and maladaptive (e.g., excessive drinking) strategies to cope with stress. CONCLUSION: Preliminary reports of emotional distress and transition stress following unfit for duty notices highlight the need for increased support and interventions to facilitate adaptive coping strategies during this vulnerable period.


Assuntos
Adaptação Psicológica , Militares , Pesquisa Qualitativa , Humanos , Militares/psicologia , Masculino , Adulto , Feminino , Estados Unidos , COVID-19/psicologia , Pessoa de Meia-Idade , Pessoas com Deficiência/psicologia , Adulto Jovem , Estresse Psicológico/psicologia
7.
Nephrol Nurs J ; 51(2): 143-152, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38727590

RESUMO

A large portion of new patients with end stage kidney disease initiates dialysis in the acute setting and continue with outpatient dialysis at in-center facilities. To increase home dialysis adoption, programs have successfully operationalized Urgent Start peritoneal dialysis to have patients avoid in-center dialysis and move straight to home. However, Urgent Start home hemodialysis (HHD) has not been a realistic option for providers or patients due to complex machines and long training times (greater than four weeks). The landscape of dialysis treatment is evolving, and innovative approaches are being explored to improve patient outcomes and optimize health care resources. This article delves into the concept of directly transitioning incident patients from hospital admission to HHD, bypassing traditional in-center dialysis training. This forward-thinking approach aims to empower patients, enhance their treatment experience, maximize efficiency, and streamline health care operations. A large hospital organization in the Northeast was able to successfully transition three patients from hospital "crash" starts on hemodialysis directly to HHD.


Assuntos
Hemodiálise no Domicílio , Falência Renal Crônica , Humanos , Falência Renal Crônica/terapia , Educação de Pacientes como Assunto , Masculino , Feminino , Pessoa de Meia-Idade , Transferência de Pacientes
8.
Sensors (Basel) ; 23(4)2023 Feb 09.
Artigo em Inglês | MEDLINE | ID: mdl-36850562

RESUMO

Hybrid aircraft configurations with combined cruise and vertical flight capabilities are increasingly being considered for unmanned aircraft and urban air mobility missions. To ensure the safety and autonomy of such missions, control challenges including fault tolerance and windy conditions must be addressed. This paper presents an observer-based optimal control approach for the active combined fault and wind disturbance rejection, with application to a quadplane unmanned aerial vehicle. The quadplane model is linearised for the longitudinal plane, vertical takeoff and landing and transition modes. Wind gusts are modelled using a Dryden turbulence model. An unknown input observer is first developed for the estimation of wind disturbance by defining an auxiliary variable that emulates body referenced accelerations. The approach is then extended to simultaneous rejection of intermittent elevator faults and wind disturbance velocities. Estimation error is mathematically proven to converge to zero, assuming a piecewise constant disturbance. A numerical simulation analysis demonstrates that for a typical quadplane flight profile at 100 m altitude, the observer-based wind gust and fault correction significantly enhances trajectory tracking accuracy compared to a linear quadratic regulator and to a H-infinity controller, which are both taken, without loss of generality, as benchmark controllers to be enhanced. This is done by adding wind and fault compensation terms to the controller with admissible control effort. The proposed observer is also shown to enhance accuracy and observer-based rejection of disturbances and faults compared to three alternative observers, based on output error integration, acceleration feedback and a sliding mode observer, respectively. The proposed approach is particularly efficient for the active rejection of actuator faults under windy conditions.

9.
Int Nurs Rev ; 69(2): 201-210, 2022 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-34081323

RESUMO

BACKGROUND: Transitioning to primary care is a highly stressful process for nurses due to the diverse roles and responsibilities required. Despite the global shift of health services requiring more nurses in primary care, there is a dearth of literature regarding their transition experiences. AIM: To explore the perceptions and experiences of nurses transitioning to primary care. METHODS: A qualitative descriptive design was used. Nineteen nurses from five primary care clinics in Singapore participated in the semi-structured interviews. These interviews gathered the experiences of nurses transitioning to primary care. Interviews were analysed using thematic analysis through an inductive and theoretical approach. Rigour was established through an audit trail, peer examination and member checking. FINDINGS: Three themes of Idealistic assumptions, Role realignment and Seeking enlightenment emerged. These themes described the nurses' initial disorientation to the unfamiliar primary care setting; their attempts to fit in by embracing the new environment and suppressing their true emotions; and the support received coupled with their ownership to learn. IMPLICATIONS FOR NURSING POLICY: The findings highlight the importance for nurse managers to promote positive transition experiences through the modification of existing support programmes and organizational cultures. To further enhance the nurses' retention within primary care, it is imperative for nurse educators and policy makers to revise the nursing curricula, primary care nursing career framework and recruitment campaigns at the national level. This brings clarity to the misconceptions in the roles and expectations required of nurses in primary care.


Assuntos
Enfermeiros Administradores , Enfermeiras e Enfermeiros , Docentes de Enfermagem , Humanos , Atenção Primária à Saúde , Pesquisa Qualitativa , Singapura
10.
Trends Food Sci Technol ; 110: 193-200, 2021 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-36567851

RESUMO

Background: COVID-19 pandemic has caused a global lockdown that has abruptly shut down core businesses and caused a worldwide recession. The forecast for a smooth transition for the agri-food and drink industry is, at best, alarming. Given that COVID-19 shutdown multiple core services (such as aviation, food services, supply chains, and export and import markets), there is an enormous deficiency in critical information to inform priority decision making for companies where this uncertainly is likely to impact negatively upon recovery. Scope and approach: The current article investigates potential innovations within the era of the COVID-19 crisis after framing them within the four issues of the food sector (food safety, bioactive food compounds, food security, and sustainability) that are directly affected by the pandemic. The prospect of foreseen innovations to disrupt the food sector during lockdown periods and the post-COVID-19 era is also discussed. Key findings and conclusions: Internet and Communication Technologies, blockchain in the food supply chain and other Industry 4.0 applications, as well as approaches that redefine the way we consume food (e.g., lab-grown meat, plant-based alternatives of meat, and valorization of a vast range of bioresources), are the innovations with the highest potential in the new era. There is also an equally pressing need to exploit social marketing to understand attitudes, perceptions, and barriers that influence the behavior change of consumers and the agri-food industry. Subsequently, this change will contribute to adapting to new norms forged by the COVID-19 pandemic, where there is a significant gap in knowledge for decision making.

11.
BMC Med Ethics ; 22(1): 35, 2021 03 31.
Artigo em Inglês | MEDLINE | ID: mdl-33789618

RESUMO

BACKGROUND: Whereas many adolescents and young people with HIV require the transfer of care from paediatric/adolescent clinics to adult ART clinics, this transition is beset with a multitude of factors that have the potential to hinder or facilitate the process, thereby raising ethical challenges of the transition process. Decisions made regarding therapy, such as when and how to transition to adult HIV care, should consider ethical benefits and risks. Understanding and addressing ethical challenges in the healthcare transition could ensure a smooth and successful transition. The purpose of this study was to analyze the ethical challenges of transitioning HIV care for adolescents into adult HIV clinics. METHODS: Data presented were derived from 191 adolescents attending nine different health facilities in Uganda, who constituted 18 focus group discussions. In the discussions, facilitators and barriers regarding adolescents transitioning to adult HIV clinics were explored. Guided by the Silences Framework for data interpretation, thematic data analysis was used to analyze the data. The principles of bioethics and the four-boxes ethics framework for clinical care (patient autonomy, medical indications, the context of care, and quality of life) were used to analyze the ethical issues surrounding the transition from adolescent to adult HIV care. RESULTS: The key emerging ethical issues were: reduced patient autonomy; increased risk of harm from stigma and loss of privacy and confidentiality; unfriendly adult clinics induce disengagement and disruption of the care continuum; patient preference to transition as a cohort, and contextual factors are critical to a successful transition. CONCLUSION: The priority outcomes of the healthcare transition for adolescents should address ethical challenges of the healthcare transition such as loss of autonomy, stigma, loss of privacy, and discontinuity of care to ensure retention in HIV care, facilitate long-term self-care, offer ongoing all-inclusive healthcare, promote adolescent health and wellbeing and foster trust in the healthcare system. Identifying and addressing the ethical issues related to what hinders or facilitates successful transitions with targeted interventions for the transition process may ensure adolescents and young people with HIV infection remain healthy across the healthcare transition.


Assuntos
Infecções por HIV , Transição para Assistência do Adulto , Adolescente , Adulto , Criança , Infecções por HIV/tratamento farmacológico , Humanos , Qualidade de Vida , Estigma Social , Uganda
12.
Cult Health Sex ; 23(6): 757-771, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-32270746

RESUMO

This study used the minority stress model to explore experiences of gender transitioning among hijra (trans woman) individuals in Mumbai, India. It used a qualitative life history calendar approach to examine transitioning as a critical life experience in a chronological manner. Twenty hijra-identified persons were recruited using purposive snowball sampling and interviewed at a community-based organisation. Data were analysed using thematic analysis. Participants reported diverse experiences living as hijra and shared perspectives on transitioning. Most participants identified to undergo transitioning at their own will. Many cited biological families as a factor that restricted or delayed transitioning, while gharana (congregation of hijras) and gurus were listed as sources of support. Participants also differed in the reasons given for transitioning, expectations, types of practices, and issues of access and support. Transitioning was described as an integral part of their experiences as hijra and developing a congruent self. Implications of the study include the need to engage communities in determining their needs and social support, provide holistic transitioning services at public hospitals, and develop technical and cultural sensitivity training for health professionals.


Assuntos
Pessoas Transgênero , Transexualidade , Feminino , Identidade de Gênero , Humanos , Índia , Saúde Mental
13.
Sensors (Basel) ; 21(13)2021 Jul 03.
Artigo em Inglês | MEDLINE | ID: mdl-34283101

RESUMO

We present a smartphone-based indoor localisation system, able to track pedestrians over multiple floors. The system uses Pedestrian Dead Reckoning (PDR), which exploits data from the smartphone's inertial measurement unit to estimate the trajectory. The PDR output is matched to a scaled floor plan and fused with model-based WiFi received signal strength fingerprinting by a Backtracking Particle Filter (BPF). We proposed a new Viterbi-based floor detection algorithm, which fuses data from the smartphone's accelerometer, barometer and WiFi RSS measurements to detect stairs and elevator usage and to estimate the correct floor number. We also proposed a clustering algorithm on top of the BPF to solve multimodality, a known problem with particle filters. The proposed system relies on only a few pre-existing access points, whereas most systems assume or require the presence of a dedicated localisation infrastructure. In most public buildings and offices, access points are often available at smaller densities than used for localisation. Our system was extensively tested in a real office environment with seven 41 m × 27 m floors, each of which had two WiFi access points. Our system was evaluated in real-time and batch mode, since the system was able to correct past states. The clustering algorithm reduced the median position error by 17% in real-time and 13% in batch mode, while the floor detection algorithm achieved a 99.1% and 99.7% floor number accuracy in real-time and batch mode, respectively.


Assuntos
Pedestres , Algoritmos , Elevadores e Escadas Rolantes , Humanos , Smartphone , Caminhada
14.
Br J Nurs ; 30(3): 166, 2021 Feb 11.
Artigo em Inglês | MEDLINE | ID: mdl-33565940

RESUMO

Julie Reynolds and Gerri Mortimore discuss the difficulties advanced clinical practitioners face when taking on this new role, and how drawing on their transferable skills can help them make the transition.


Assuntos
Profissionais de Enfermagem , Recompensa , Humanos
15.
Health Qual Life Outcomes ; 18(1): 177, 2020 Jun 10.
Artigo em Inglês | MEDLINE | ID: mdl-32522194

RESUMO

BACKGROUND: Rare diseases may be life-threatening or chronically debilitating conditions. Patient care needs are often complex and challenging to coordinate and deliver effectively. Rare diseases and their clinical management may therefore substantially impact on patients' health-related quality of life (HRQOL). The use of patient-reported outcome measures (PROMs) may complement clinical assessments by elucidating patients' perspectives on their health status and care priorities. This study explored the opinions of patients and clinicians on the use of PROMs in the management of patients with rare diseases in routine clinical practice. METHODS: A total of 15 semi-structured one-to-one interviews were conducted with four patients with primary sclerosing cholangitis (PSC); five renal transplant recipients; and six PSC doctors from University Hospitals Birmingham (UHB) NHS Foundation Trust. A focus group session was also conducted with 10 clinical staff members (doctors, nurses and other allied health professionals from UHB). The suitability and acceptability of the Chronic Liver Disease Questionnaire (CLDQ) and the Short Form 12 (SF12) were assessed by patients with PSC and their doctors while the Paediatric quality of life inventory Transplant Module (PedsQL-TM) and the EuroQoL-5 dimensions (EQ. 5D) were evaluated by the renal transplant recipients and their doctors. The discussions were audio recorded and transcribed verbatim. Coding of the transcripts was done using the Nvivo 11 Plus software. Thematic analysis was conducted to identify the main themes and subthemes. RESULTS: Four themes were identified, namely: (i) potential benefits of PROMs in the management of rare diseases; (ii) views on selected questionnaires; (iii) practical considerations for implementation; and (iv) potential facilitators and barriers of implementation. Patients and clinicians suggested that the use of ePROMs may facilitate patient-centred care by promoting patient-clinician communication, highlighting aspects of HRQOL that are important to patients and encouraging patient involvement in their care. They also felt that the disease-specific CLDQ and PedsQL-TM were more relevant than the generic SF12 and EQ-5D. CONCLUSIONS: Patients with rare diseases often experience impaired HRQOL. The use of an ePROM system may enhance the routine management of patients with rare diseases.


Assuntos
Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida , Doenças Raras/psicologia , Feminino , Grupos Focais , Humanos , Masculino , Pesquisa Qualitativa , Doenças Raras/terapia
16.
J Oncol Pharm Pract ; 26(6): 1324-1330, 2020 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-31822200

RESUMO

BACKGROUND: Chemotherapy regimens historically have required admission of the patient to the hospital for extended infusions running over multiple days to complete each cycle of therapy. With the evolution of monitoring strategies readily available, a renaissance in patient care and healthcare cost utilization is necessary as transitioning the administration of these agents to the outpatient setting is seemingly achievable and is potentially more cost-effective. PURPOSE: This evaluation sought to primarily measure cost-savings for an institution by transitioning inpatient chemotherapy regimens to the outpatient setting. Secondary outcomes evaluated the effect of this transition on overall patient length of stay, prevalence of adverse effects, and overall chemotherapy schedule adherence as a result of implementing transitions in sites of care. Barriers to receiving care in the outpatient setting were assessed by evaluating the acuity of performance status as well as distance from the hospital. METHODS: This single-center retrospective, quantitative chart and expense analysis evaluated patients receiving rituximab, etoposide, prednisone, vincristine, cyclophosphamide and doxorubicin (R-EPOCH) or rituximab, ifosfamide, carboplatin, and etoposide (R-ICE) chemotherapy regimens based on treatment setting at a single institution. Included patients were treated at the University of Chicago Medical Center. Those receiving inpatient-only management as compared with patients who received therapy in outpatient settings were compared in a matched cohort analysis. The control group was matched from the period before transition of therapy was instituted between November 2014 and November 2015, with those patients transitioned to outpatient therapy (December 2015 to November 2016), using demographic, diagnostic, treatment, and clinical status data to assure group similarity. Mean cost of therapy was compared between inpatient and outpatient regimens. Descriptive and demographic categorical data were compared using the Fisher's exact test. Continuous data were evaluated using the Student's t test. A significance level of alpha <0.05 was used for all analysis. RESULTS: The cost of R-EPOCH therapy represented a significant difference across groups. R-ICE therapy similarly saw significant cost differences between inpatient and outpatient groups. If this was made standard of care for qualifying patients a retrospective annualized estimation of $466,507.85 with R-EPOCH therapy and $205,977.60 for R-ICE therapy could have been saved if this was utilized for patients who previously received their therapy as an inpatient. CONCLUSION: The population of patients cared for at the University of Chicago Medicine during this time-period qualified for outpatient treatment for those treated with R-EPOCH and R-ICE regimens with no significantly identifiable prohibitive barriers between groups. As no significant complications manifested, it is reasonable to continue transitioning patients receiving these regimens to the outpatient setting where appropriate. R-EPOCH and R-ICE therapies were shown to be reasonable outpatient therapy while providing significant cost-savings for the institution.


Assuntos
Assistência Ambulatorial/métodos , Protocolos de Quimioterapia Combinada Antineoplásica/administração & dosagem , Hospitalização , Linfoma não Hodgkin/tratamento farmacológico , Transferência de Pacientes/métodos , Adulto , Idoso , Assistência Ambulatorial/economia , Protocolos de Quimioterapia Combinada Antineoplásica/efeitos adversos , Protocolos de Quimioterapia Combinada Antineoplásica/economia , Estudos de Coortes , Redução de Custos , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos/economia , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos/etiologia , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos/prevenção & controle , Feminino , Hospitalização/economia , Humanos , Pacientes Internados , Linfoma não Hodgkin/diagnóstico , Linfoma não Hodgkin/economia , Masculino , Pessoa de Meia-Idade , Pacientes Ambulatoriais , Transferência de Pacientes/economia , Estudos Retrospectivos
17.
BMC Health Serv Res ; 20(1): 835, 2020 Sep 05.
Artigo em Inglês | MEDLINE | ID: mdl-32891150

RESUMO

BACKGROUND: There is a growing number of adolescents and young adults living with HIV (YPLHIV) who require the transfer of care from pediatric/ adolescent clinics to adult Antiretroviral therapy (ART) clinics. A successful transition is critical for optimum health outcomes, yet facilities may lack infrastructure, human resources (with appropriate knowledge and skills), and a supportive environment, as only 3% of clinics in Uganda caring for YPLHIV have a process for supporting this critical transition from pediatric to adult care, and, facilitators and barriers of a successful transition are not well documented. The purpose of this study was to explore the facilitators and barriers of transitioning among adolescents from adolescent clinics to adult ART clinics. METHOD: Eighteen focus group discussions were held in nine health facilities with 174 adolescents and YPLHIV to assess barriers and facilitators regarding transitioning to adult clinics. The focus group discussions were audio-recorded and transcribed. The Silences Framework using a thematic approach guided the analysis. RESULTS: The key emerging issues were: Unfriendly adults in adult clinics, Care provided in the adolescent clinics, fear of stigma from health care providers, Congestion and long waiting time, fear to lose friends were barriers to transitioning. Transitioning preparation is key to a successful transition, moving as a cohort facilitates transition, and care in adult clinics offers new opportunities, could facilitate readiness and transition. CONCLUSION: YPLHIV expressed fear to transition to adult clinics mainly because of the perceived better care provided in the adolescent clinic, thus constituting a barrier to smooth transition A range of individual, social and health system and services-related factors hindered transitioning. The expectation of transitioning as a group, assurance of similar care as in the adolescent clinic, and guarantees of confidentiality, privacy, and autonomy in decision-making for care was perceived as facilitators. Understanding barriers and facilitators can enable the Ministry of Health to improve the quality of life of YPLHIV through linkage to care, adherence, retention, and viral suppression. There is a need to better planning and preparation for clinical providers and YPLHIV with a focus on age-appropriate and individualized case management transition as well as focus on improving both clinical and psychosocial support throughout the process.


Assuntos
Instituições de Assistência Ambulatorial/normas , Antirretrovirais/uso terapêutico , Infecções por HIV/tratamento farmacológico , Transição para Assistência do Adulto/normas , Adolescente , Adulto , Feminino , Grupos Focais , Pessoal de Saúde , Humanos , Masculino , Qualidade de Vida , Estigma Social , Uganda , Adulto Jovem
18.
J Nurs Manag ; 28(6): 1356-1363, 2020 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-32671889

RESUMO

AIM: To explore perspectives of nurse managers about their preparation for transitioning into positions of leadership. BACKGROUND: There have been serious concerns about the level of preparation as well as availability of support systems for transitioning of nurses into positions of authority. METHODS: This was a quantitative study conducted in four Caribbean countries targeting nurses promoted to leadership positions within the last 5 years. Data were collected using a 30-item questionnaire. Ethical approvals were received from the University of the West Indies and the participating countries. RESULTS: Most participants were female, had 15 or more years' experience and an associate degree/diploma in nursing. They felt prepared through training and acting opportunities although many were not preceptored/mentored into the position. Preparation by training was positively correlated to acting opportunities, preceptorship programme and having a preceptor. CONCLUSION: Transitioning into positions of leadership requires readiness from a personal as well as an organisational perspective. There must be investment in the development opportunities to support nurses' transition into leadership positions. IMPLICATIONS FOR NURSING MANAGEMENT: Organisational continuity and effectiveness will be dependent on a balance between investing in experienced nursing personnel while encouraging personal development of less-experienced nurses. Peer mentorship must be utilized to facilitate nurse transition.


Assuntos
Enfermeiros Administradores , Enfermeiras e Enfermeiros , Região do Caribe , Feminino , Humanos , Liderança , Preceptoria , Índias Ocidentais
19.
Br J Nurs ; 29(10): 561-565, 2020 May 28.
Artigo em Inglês | MEDLINE | ID: mdl-32463753

RESUMO

The advanced nurse practitioner (ANP) role was established in Ireland in 2001 and represents an important nursing role development within Irish healthcare. Currently there are 336 ANPs registered with the Nursing and Midwifery Board of Ireland, working across 40 specialties. This number is increasing exponentially in response to emerging and anticipated future service needs and population demand projecting to a critical mass of 750 by 2021. Health service provision is enhanced by advanced practice performance outcomes. This article explores nurse to advanced nurse practitioner transitional journeys, a concept that has not previously been researched in depth from an Irish perspective. The theories of Benner, Woods, and Bourdieu are reviewed to explore whether an advance practice career trajectory results in unique nurse-to-ANP role transitioning. Contextualising possible personal, professional and educational transitions may enable the promotion of effective career 'scaffolding' to enhance a smooth transition for aspiring ANPs into advanced nursing practice roles.


Assuntos
Prática Avançada de Enfermagem/educação , Prática Avançada de Enfermagem/organização & administração , Escolha da Profissão , Profissionais de Enfermagem/educação , Profissionais de Enfermagem/organização & administração , Papel do Profissional de Enfermagem/psicologia , Recursos Humanos de Enfermagem Hospitalar/educação , Adulto , Feminino , Humanos , Irlanda , Masculino , Pessoa de Meia-Idade
20.
Prax Kinderpsychol Kinderpsychiatr ; 69(6): 570-589, 2020 Sep.
Artigo em Alemão | MEDLINE | ID: mdl-32988309

RESUMO

The Zurich Specialist Clinic for Adolescent with Gender Dysphoria - Preliminary Follow-up Results The specialist clinic for children and adolescents with gender dysphoria (GD) of the Psychiatric University Hospital of Zurich shows an increasing number of referrals since its foundation in 2009. Since 2014 we started an observational study including adolescents aged 13 years and older. At the time of the first appointment (T0) N = 77 participants completed a battery of questionnaires assessing demographic factors, general psychopathology, quality of life as well as gender identity, social transitioning and GD treatment modalities. Few of the adolescents were socially transitioned and had hormone therapy but 77.9 % wished to get hormone therapy. Follow up assessment T1 was performed after at least one year of treatment in our specialist clinic. 51 adolescents completed an online follow-up examination including the same questionnaires and baseline parameters as well as a scale measuring treatment satisfaction. At T0, 77.3 % of the adolescents scored in the clinical range of the Youth Self Report (YSR) total score, which did not decrease significantly until T1 in our preliminary follow up sample. Puberty blocking before T0 correlated negatively with the YSR score, indicating less psychopathology in treated patients. Preliminary longitudinal analysis suggests that social transitioning influences quality of life (Kidscreen subscale autonomy and parental relationship). At T1, 52 % of the adolescents were socially transitioned in all contexts and 70 % received gender affirming hormonal treatment. Gender identity changed between T0 and T1 in about 18 % of the cases. Treatment satisfaction in most cases was high.


Assuntos
Disforia de Gênero/terapia , Adolescente , Instituições de Assistência Ambulatorial , Feminino , Seguimentos , Disforia de Gênero/psicologia , Identidade de Gênero , Humanos , Masculino , Qualidade de Vida
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