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1.
Healthcare (Basel) ; 11(18)2023 Sep 15.
Artigo em Inglês | MEDLINE | ID: mdl-37761749

RESUMO

This paper contributes to the ongoing discussion in the United Kingdom regarding euthanasia and assisted dying, using data specifically related to individuals with dementia. A qualitative approach was taken with data captured via a set of written questions in the form of a Mass Observation Archive Directive. The respondents, known as Observers, provided written responses; there was no limit to the length of the responses and the Observers were able to provide as much or as little detail as they chose. The data were analysed thematically utilising NVivo software. One-hundred and seven responses were received, representing a range of beliefs, and with opinions regarding euthanasia and dementia with pro, anti, and uncertain views being expressed. Five main themes emerged during our data analysis: capacity, legislation, agency and personal philosophies, disquietude, and incumbrance. Consistent with previous research capturing public views regarding euthanasia and assisted dying for people with dementia, the findings suggest policy makers may wish to consult the British public regarding legislation regarding euthanasia and dementia.

2.
Int J Technol Assess Health Care ; 39(1): e19, 2023 Apr 11.
Artigo em Inglês | MEDLINE | ID: mdl-37039484

RESUMO

OBJECTIVES: The Scottish Medicines Consortium (SMC) conducts early health technology assessment (HTA) of new medicines on behalf of NHSScotland. Assessment of end-of-life (EoL), orphan, and ultra-orphan medicines includes a process to gather evidence from patients and carers during Patient and Clinician Engagement (PACE) meetings. The output of PACE meetings is a consensus statement describing the medicine's added value from the perspective of patients/carers and clinicians. The PACE statement is used by SMC committee members in decision making. This study compared how PACE participants and SMC committee members rate the importance of information in PACE statements for these medicines. METHODS: A survey was undertaken of patient group (PG) representatives and clinicians who participated in PACE meetings, and SMC committee members. RESULTS: PACE participants who responded (26 PG representatives and 14 clinicians) rated health benefits and ability to take part in normal life as important/very important. Convenience of administration and treatment choice received the lowest rating. Hope for the future received the most diverse response. PACE participants generally rated the importance of quality of life themes higher than committee members (n = 20) but the rank order was similar. Differences between the proportion of PACE participants and committee members who rated themes as important/very important were greatest for treatment choice and hope for the future. CONCLUSIONS: In general, PACE themes and subthemes that were rated highly by PACE participants were also considered important by SMC committee members, indicating that information captured during PACE meetings is relevant when making decisions on EoL, orphan, and ultra-orphan medicines.


Assuntos
Produção de Droga sem Interesse Comercial , Qualidade de Vida , Humanos , Consenso , Preparações Farmacêuticas , Morte
3.
Brain Behav Immun Health ; 28: 100596, 2023 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-36713477

RESUMO

Background: Little is known about the effects of a mild SARS-CoV-2 infection on health-related quality of life. Methods: This prospective observational study of symptomatic adults (18-87 years) who sought outpatient care for an acute respiratory illness, was conducted from 3/30/2020 to 4/30/2021. Participants completed the Short Form Health Survey (SF-12) at enrollment and 6-8 weeks later, to report their physical and mental health function levels as measured by the physical health and mental health composite scores (PHC and MHC, respectively). PHC and MHC scores for COVID-19 cases and non-COVID cases were compared using t-tests. Multivariable regression modeling was used to determine predictors of physical and mental health function at follow-up. Results: Of 2301 enrollees, 426 COVID-19 cases and 547 non-COVID cases completed both surveys. PHC improved significantly from enrollment to follow-up for both COVID-19 cases (5.4 ± 0.41; P < 0.001) and non-COVID cases (3.3 ± 0.32; P < 0.001); whereas MHC improved significantly for COVID-19 cases (1.4 ± 0.51; P < 0.001) and decreased significantly for non-COVID cases (-0.8 ± 0.37; P < 0.05). Adjusting for enrollment PHC, the most important predictors of PHC at follow-up included male sex (ß = 1.17; SE = 0.5; P = 0.021), having COVID-19 (ß = 1.99; SE = 0.54; P < 0.001); and non-white race (ß = -2.01; SE = 0.70; P = 0.004). Adjusting for enrollment MHC, the most important predictors of MHC at follow-up included male sex (ß = 1.92; SE = 0.63; P = 0.002) and having COVID-19 (ß = 2.42; SE = 0.67; P < 0.001). Conclusion: Both COVID-19 cases and non-COVID cases reported improved physical health function at 6-8 weeks' convalescence; whereas mental health function improved among COVID-19 cases but declined among non-COVID cases. Both physical and mental health functioning were significantly better among males with COVID-19 than females.

4.
Orphanet J Rare Dis ; 17(1): 145, 2022 04 01.
Artigo em Inglês | MEDLINE | ID: mdl-35365177

RESUMO

BACKGROUND: Limited real-world data from routine clinical care are available on the safety and effectiveness of treatment with taliglucerase alfa in patients with Gaucher disease (GD). METHODS: Taliglucerase Alfa Surveillance (TALIAS), a multinational prospective Drug Registry of patients with GD, was established to evaluate the long-term safety (primary objective) and effectiveness (secondary objective) of taliglucerase alfa. We present an interim analysis of the data from the Drug Registry collected over the 5-year period from September 2013 to January 2019. RESULTS: A total of 106 patients with GD (15.1% children aged < 18 years; 53.8% females) treated with taliglucerase alfa have been enrolled in the Drug Registry, as of January 7, 2019. The median duration of follow-up was 795 days with quartiles (Q1, Q3) of 567 and 994 days. Fifty-three patients (50.0%) were from Israel, 28 (26.4%) were from the United States, and 25 (23.6%) were from Albania. At the time of enrollment, most patients (87.7%) had received prior enzyme replacement therapy (ERT). Thirty-nine of the 106 patients had treatment-emergent adverse events (AEs). Twelve of the 106 patients experienced serious AEs; two patients experienced four treatment-related serious AEs. Four patients died, although none of the deaths was considered to be related to taliglucerase alfa treatment by the treating physicians. Nine patients discontinued from the study, including the four who died. At baseline, patients with prior ERT had a higher mean hemoglobin concentration and platelet counts than treatment-naïve patients, likely reflecting the therapeutic effects of prior treatments. During follow-up, the hemoglobin concentration and platelet counts increased in the treatment-naïve patients and remained relatively constant or increased slightly in patients with prior ERT. Spleen and liver volumes decreased in treatment-naïve patients. CONCLUSIONS: The interim data showed no new or emergent safety signals. The overall interim data are consistent with the clinical program experience and known safety and effectiveness profile of taliglucerase alfa.


Assuntos
Doença de Gaucher , Adolescente , Criança , Terapia de Reposição de Enzimas/efeitos adversos , Feminino , Doença de Gaucher/tratamento farmacológico , Glucosilceramidase/efeitos adversos , Humanos , Masculino , Sistema de Registros
5.
Healthcare (Basel) ; 9(8)2021 Aug 05.
Artigo em Inglês | MEDLINE | ID: mdl-34442138

RESUMO

The research aim was to evaluate the rationale of undergraduate final-year student nurses to undertake paid clinical placements during COVID-19 (Wave 1). The nursing profession reacted innovatively to meet demands placed on the National Health Service during COVID-19. Temporary changes to professional regulation enabled final-year United Kingdom nursing students to voluntarily undertake paid placements in the National Health Service. Neither full-time employees nor full-time students, volunteers undertook a unique hybrid role bolstering the front-line health workforce. Using reflective qualitative inquiry, 17 volunteers evaluated reasoning for entering practice in acute hospitals. Online surveys based around the UK Nursing and Midwifery Council Competency Framework (NMC 2012) were completed weekly for 6 weeks. Data were thematically analysed. Six themes were identified, including sense of duty, and opting-in or out. These highlighted the importance of collaboration and the tripartite relationship between University, host and student during placement, and the influence of these on the learning experience. Several significant insights emerged for nurse education and curricula during pandemics related to patient safety, safety climate and governance. The insights were used to develop a "Student Nurses Placement Framework" with recommendations for Pre-During-Post placement, offering a guide for future nursing workforce recruitment and retention.

6.
Can Fam Physician ; 67(6): 439-448, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-34127469

RESUMO

OBJECTIVE: To explore primary care providers' (PCPs') role in result notification for newborn screening (NBS) for cystic fibrosis (CF), given that expanded NBS has increased the number of positive screening test results, drawing attention to the role of PCPs in supporting families. DESIGN: Cross-sectional survey and qualitative interviews. SETTING: Ontario. PARTICIPANTS: Primary care providers (FPs, pediatricians, and midwives) who received a positive CF NBS result for an infant in their practice in the 6 months before the study. MAIN OUTCOME MEASURES: Whether the PCP notified the family of the initial positive CF screening result. RESULTS: Data from 321 PCP surveys (response rate of 51%) are reported, including 208 FPs, 68 pediatricians, and 45 midwives. Interviews were completed with 34 PCPs. Most (65%) surveyed PCPs reported notifying the infant's family of the initial positive screening result; 81% agreed that they have an important role to play in NBS; and 88% said it was important for PCPs, rather than the NBS centre, to notify families of initial positive results. With support and information from NBS centres, 68% would be extremely or very confident in doing so; this dropped to 54% when reflecting on their recent reporting experience. More than half (58%) of all PCPs said written point-of-care information from the NBS centre was the most helpful format. Adjusted for relevant factors, written educational information was associated with a lower rate of notifying families than written plus verbal information (risk ratio of 0.79; 95% CI 0.69 to 0.92). In the interviews, PCPs emphasized the challenge of balancing required content knowledge with the desire for the news to come from a familiar provider. CONCLUSION: Most PCPs notify families of NBS results and value this role. These data are relevant as NBS programs and other genomic services expand and consider ways of keeping PCPs confident and actively involved.


Assuntos
Fibrose Cística , Triagem Neonatal , Estudos Transversais , Fibrose Cística/diagnóstico , Humanos , Lactente , Recém-Nascido , Ontário , Atenção Primária à Saúde
7.
Can Fam Physician ; 67(6): e144-e152, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-34127476

RESUMO

OBJECTIVE: To explore primary care providers' (PCPs') preferred roles and confidence in caring for infants receiving a positive cystic fibrosis (CF) newborn screening (NBS) result, as well as management of CF family planning issues, given that expanded NBS has resulted in an increase in positive results. DESIGN: Mailed questionnaire. SETTING: Ontario. PARTICIPANTS: Ontario FPs, pediatricians, and midwives identified by Newborn Screening Ontario as having had an infant with a positive CF NBS result in their practice in the previous 6 months. MAIN OUTCOME MEASURE: Primary care providers' preferred roles in providing well-baby care for infants with positive CF screening results. RESULTS: Overall, 321 of 628 (51%) completed surveys (208 FPs, 68 pediatricians, 45 midwives). For well-baby care for infants confirmed to have CF, 77% of PCPs indicated they would not provide total care (ie, 68% would share care with other specialists and 9% would refer to specialists completely); for infants with an inconclusive CF diagnosis, 50% of PCPs would provide total care, 45% would provide shared care, and 5% would refer to a specialist; for CF carriers, 89% of PCPs would provide total care, 9% would provide shared care, and 2% would refer. Half (54%) of PCPs were extremely or very confident in providing reassurance about CF carriers' health. Only 25% knew how to order parents' CF carrier testing; 67% knew how to refer for prenatal diagnosis. Confidence in reassuring parents about the health of CF carrier children was associated with providing total well-baby care for CF carriers (risk ratio of 1.50; 95% CI 1.14 to 1.97) and infants with an inconclusive diagnosis (risk ratio of 3.30; 95% CI 1.34 to 8.16). CONCLUSION: Most PCPs indicated willingness to treat infants with a range of CF NBS results in some capacity. It is concerning that some indicated CF carriers should have specialist involvement and only half were extremely or very confident about reassuring families about carrier status. This raises issues about possible medicalization of those with carrier status, prompting the need for PCP education about genetic disorders and the meaning of genetic test results.


Assuntos
Fibrose Cística , Triagem Neonatal , Criança , Fibrose Cística/diagnóstico , Feminino , Pessoal de Saúde , Humanos , Lactente , Recém-Nascido , Ontário , Gravidez , Atenção Primária à Saúde
8.
Int J Technol Assess Health Care ; 37(1): e50, 2021 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-33789779

RESUMO

OBJECTIVES: To develop an international template to support patient submissions in Health Technology Assessments (HTAs). This was to be based on the experience and feedback from the implementation and use of the Scottish Medicines Consortium's (SMC) Summary Information for Patient Groups (SIP). METHODS: To gather feedback on the SMC experience, web-based surveys were conducted with pharmaceutical companies and patient groups familiar with the SMC SIP. Semistructured interviews with representatives from HTA bodies were undertaken, along with patient group discussions with those less familiar with the SIP, to explore issues around the approach. These qualitative data informed the development of an international SIP template. RESULTS: Survey data indicated that 82 percent (18 of 22 respondents) of pharmaceutical company representatives felt that the SIP was worthwhile; 88 percent (15/17) of patient group respondents found the SIP helpful. Both groups highlighted the need for additional support and guidance around plain language summaries. Further suggestions included provision of a glossary of terms and cost-effectiveness information. Patient group interviews supported the survey findings and led to the development of a new template. HTA bodies raised potential challenges around buy-in, timing, and bias connected to the SIP approach. CONCLUSIONS: The international SIP template is another approach to support deliberative processes in HTA. Although challenges remain around writing summaries for lay audiences, along with feasibility considerations for HTA bodies, the SIP approach should support more meaningful patient involvement in HTAs.


Assuntos
Participação do Paciente , Avaliação da Tecnologia Biomédica , Humanos , Inquéritos e Questionários
9.
BMC Womens Health ; 21(1): 35, 2021 01 25.
Artigo em Inglês | MEDLINE | ID: mdl-33494737

RESUMO

BACKGROUND: Vaginal mesh implants are medical devices used in a number of operations to treat stress urinary incontinence and pelvic organ prolapse. Although many of these operations have delivered good outcomes, some women have experienced serious complications that have profoundly affected their quality of life. To ensure that evolving patient information is up-to-date, accurate and appropriate, the Transvaginal Mesh Oversight Group 'user-tested' a newly developed Scottish patient resource, the first to focus exclusively on the issue of complications. The aim of this research was to gather feedback on usability, content, language and presentation to inform the development of the resource from a user perspective. METHODS: The experience of using the patient resource was captured through semi-structured interviews that followed a 'think-aloud' protocol. The interviewer observed each participant as they went through the resource, asking questions and making field notes. Participants' comments were then categorised using a validated model of user experience and subsequently analysed thematically. RESULTS: Thirteen people participated in the user testing interviews, including women with lived experience of mesh implants (n = 7), a convenience sample of staff working for Healthcare Improvement Scotland (n = 5) and a patient's carer (n = 1). The majority of participants considered the resource as clear and helpful. Respondents reported that some presentational aspects promoted usability and understandability, including the use of a font that is easy to read, bullet lists, coloured headings and simple language. Barriers included the reliance on some technical language and an explicit anatomical diagram. Participants endorsed the valuable role of health professionals as co-mediators of patient information. CONCLUSIONS: The findings illustrate the value of undertaking in-depth user-testing for patient information resources before their dissemination. The study highlighted how the direct guidance or navigation of a patient information resource by a health professional could increase its salience and accuracy of interpretation by patients, their families and carers. These insights may also be useful to other developers in improving patient information.


Assuntos
Prolapso de Órgão Pélvico , Incontinência Urinária por Estresse , Feminino , Humanos , Prolapso de Órgão Pélvico/cirurgia , Qualidade de Vida , Escócia , Telas Cirúrgicas/efeitos adversos , Incontinência Urinária por Estresse/cirurgia
10.
Nurs Child Young People ; 33(2): 19-24, 2021 Mar 04.
Artigo em Inglês | MEDLINE | ID: mdl-33314809

RESUMO

Beta thalassaemia major is an inherited condition that causes severe anaemia. Patients with the condition require regular blood transfusions. One curative treatment option available is bone marrow transplantation, but a bone marrow transplant is a high-risk, painful procedure requiring prolonged hospitalisation. Undergoing such a disruptive treatment can be a source of great anxiety for young people and their families, who will need honest, sensitive and empathetic communication, person-centred care, support to socialise and access education, involvement in decision-making and signposting to financial support. This article discusses the role of children's nurses in addressing the psychosocial needs of young people with thalassaemia who undergo bone marrow transplantation and in supporting young people's families.


Assuntos
Transplante de Medula Óssea/normas , Qualidade de Vida/psicologia , Talassemia/complicações , Adolescente , Transplante de Medula Óssea/métodos , Transplante de Medula Óssea/psicologia , Criança , Humanos , Talassemia/psicologia
11.
Clin Oral Investig ; 25(1): 295-310, 2021 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-32495222

RESUMO

OBJECTIVES: Monocarboxylate transporters (MCT) 1, 2 and 4 play an important role in tumor metabolism. The amount of lactate transported by MCT's highly correlates with overall survival. Furthermore, glycolysis and hypoxia are possible causes for radiation resistance. MATERIALS AND METHODS: An oral squamous cell carcinoma cell line (CAL27, ATCC) was analyzed in an in vitro cell assay. After incubation with two different inhibitors for MCT1 (AR-C122982/SR-13800 and AR-C155858/SR-13801, Tocris) or for MCT4 (simvastatin, Sigma-Aldrich and 2-cyano-3-(4-hydroxyphenyl)-2-propenoic acid (CHC), Tocris), cells were irradiated with six gray with a Gammacell 2000 (Nuklear Data). For analysis, cell counting assay, wound healing assay, MTT assay and clonogenic assay were applied. RESULTS: Cell counting assay showed significant lower results for simvastatin, CHC and for the highest concentrations of AR-C122982 and AR-C155858 (p < 0.03). Additionally, cell counts decreased significantly with irradiation after 72 hours (p < 0.05) only for AR-C122982, CHC and simvastatin. The clonogenic assay confirmed these results with substantially reduced growth when incubated with CHC, simvastatin and AR-C155858 (p < 0.002). Furthermore, MCT1 and 4 inhibition led to highly reduced migration (p < 0.05). There again, comparing the wound healing assay of irradiated to non-irradiated tests showed contrary results (controls: p < 0.001; AR-C155858: p > 0.05; AR-C122982: p > 0.32; CHC: p > 0.1; simvastatin p > 0.1). The MTT assay presented significant effects with MCT1 and 4 inhibition (simvastatin/AR-C122982/CHC: p < 0.007). Irradiated cells showed significantly lower expression after only 48 h compared to non-irradiated cells (simvastatin/AR-C122982/CHC: p < 0.02). CONCLUSIONS: Inhibition of MCT, especially MCT4 may represent a possible tool to overcome radiation resistance in tumor cell lines. CLINICAL RELEVANCE: MCT Inhibitors may be used as a possible therapeutic approach to sensitize OSCC to radiation.


Assuntos
Carcinoma de Células Escamosas , Neoplasias Bucais , Radiação , Simportadores , Carcinoma de Células Escamosas/radioterapia , Contagem de Células , Linhagem Celular Tumoral , Humanos , Transportadores de Ácidos Monocarboxílicos
12.
J Adv Nurs ; 77(1): 23-46, 2021 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-33022791

RESUMO

AIM: To identify, evaluate and summarize evidence from qualitative, quantitative and mixed method studies conducted using age suits or other age simulation equipment, with health and social care students. DESIGN: Convergent segregated mixed method review design as outlined by the Johanna Briggs Institute. DATA SOURCES: CINAHL (+ with Full Text), MEDLINE, PsycINFO, PubMed, SocINDEX, Web of Science, Cochrane Library, Emerald Insight, Proquest nursing, Science Direct, Wiley Online and BioMed Central (January 2000-January 2020). REVIEW METHODS: Convergent segregated synthesis was used to synthesize evidence from the studies and the MERSQI checklist used to appraise quality. RESULTS: A total of 23 studies were reviewed: one randomized control, two post-test only randomized control, three quasi-experimental, 15 one-group pre/post studies and two qualitative studies. Of the seventeen studies carrying out inferential statistics on attitude scores post intervention, 11 reported an improvement, three indicated no significant change and three reported worsening scores. Key themes included use of appropriate scales, type of equipment used, location and length of interactions, debriefing and contextualization of interventions in broader teaching. CONCLUSION: The impact of ageing simulation interventions on health and social care student's attitudes to older people was predominantly positive. However, further high-quality research is warranted to understand the optimal use of such interventions in the context of health care for a growing ageing population. IMPACT: It is important health and social care staff have appropriate knowledge and training to enable them to provide high-quality care to older people and challenge potential ageism in the system. This review adds to the body of work around the use of simulation and experiential learning to educate health and social care students about ageing and ageism. It also offers recommendations for using ageing simulations effectively to inform attitudes of prospective professionals who will influence future health and social care.


Assuntos
Envelhecimento , Atenção à Saúde , Idoso , Humanos , Estudos Prospectivos , Pesquisa Qualitativa , Apoio Social
13.
Materials (Basel) ; 13(2)2020 Jan 09.
Artigo em Inglês | MEDLINE | ID: mdl-31936613

RESUMO

The most commonly used denture base material, polymethyl methacrylate, lacks ideal mechanical properties, which are reflected in its relatively high failure rate. Several methods have been explored to reinforce the material and reduce the cost of denture repair and replacement. In this study, various surface modified filler particles at different concentrations were dispersed in conventional and high-impact denture base materials and tested for their improvement in mechanical properties. Inorganic filler particles were coated with different silane coupling agents using an ultrasonic device. The particulates were dispersed in the resin and the composites polymerised through an innovative dual-cure technique. Charpy impact test, single-edge notch three-point bend fracture toughness test and Biaxial Flexural Strength (BFS) were performed on the specimens. The results showed that mechanical properties of the denture base resin can be improved by incorporating filler particles; however, the surface characteristics, quantity and level of dispersion of the particles play critical role in the mechanical behaviour of the composites. The results of this study are a promising step towards developing more fracture-resistant denture base materials.

14.
J Neurotrauma ; 37(12): 1481-1490, 2020 06 15.
Artigo em Inglês | MEDLINE | ID: mdl-31830857

RESUMO

With increasing evidence for the existence of a cerebral thrombin system, coagulation factor IIa (thrombin) is suspected to influence the pathogenesis of secondary injury progression after intracerebral hemorrhage (ICH). We hypothesized that mechanisms associated with local volume expansion after ICH, rather than blood constituents, activate the cerebral thrombin system and are responsible for detrimental neurological outcome. To test this hypothesis, we examine the local thrombin expression after ICH in a C57BL/6N mouse model in the presence and absence of blood constituents. ICH was established using stereotaxic orthotopic injection of utologous blood (n = 10) or silicone oil as inert volume substance (n = 10) into the striatum. Intracranial pressure (ICP), cerebral blood flow (CBF), and mean arterial blood pressure (MAP) were monitored during and 30 min after the procedure. No significant differences between ICP, CBF, and MAP were found between both groups. Prothrombin messenger RNA expression was upregulated early after ICH. Immunohistochemistry showed an increase of perilesional thrombin in both groups (blood, 4.24-fold; silicone, 3.10-fold), whereas prothrombin fragment (F1.2) was elevated only in the absence of whole blood. Thrombin expression is colocalized with neuronal antigen expression. After 24 h, lesion size and neuronal loss were similar. Perihematomal thrombin correlated with increased neuronal loss and detrimental neurological outcome in vivo. In our study, we demonstrate, for the first time, that the local cerebral thrombin system is activated after ICH and that this activation is independent of the presence of whole-blood constituents. In our study, neuronal damage is driven by local thrombin expression and leads to an adverse clinical outcome.


Assuntos
Hemorragia Cerebral/metabolismo , Hemorragia Cerebral/patologia , Circulação Cerebrovascular/fisiologia , Neurônios/metabolismo , Neurônios/patologia , Trombina/biossíntese , Animais , Coagulação Sanguínea/fisiologia , Células Cultivadas , Hemorragia Cerebral/complicações , Masculino , Camundongos , Camundongos Endogâmicos C57BL
15.
Folia Phoniatr Logop ; 72(2): 131-142, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-31597152

RESUMO

OBJECTIVE: There is currently limited knowledge on the useof transcription in the management of children with speech sound disorders (SSD) by speech-language pathologists in Australia. This study explored the use of transcription, the facilitators, and challenges of transcription use, and differences in the use of detailed transcription with various client groups. Method and Participants: Eighty-four participants (speech-language pathologists working in Australia) completed an online exploratory survey which included closed and open-ended questions. RESULTS: 95% of participants reported using transcription. The three most commonly reported strategies/resources were transcription charts (81%), self-practice (68%), and websites (42%). Transcription challenges included the use of two vowel notation systems, reduced proficiency in transcription, service delivery issues, sampling/recording issues, and issues with using transcription to communicate. Finally, results from this survey found that participants use detailed transcription more often when recording the speech of children with childhood apraxia of speech and craniofacial impairment compared to using transcription to document the speech of children who have SSD of unknown origin. Most participants (91%) had not attended transcription professional development. CONCLUSIONS: These findings have implications for the university training of speech-language pathologists and for the establishment of professional development courses for practising speech-language pathologists in Australia.


Assuntos
Linguagem Infantil , Documentação , Padrões de Prática Médica , Distúrbios da Fala/diagnóstico , Patologia da Fala e Linguagem/métodos , Fala , Adulto , Austrália , Criança , Coleta de Dados , Documentação/métodos , Feminino , Humanos , Internet , Pessoa de Meia-Idade , Multilinguismo , Fonética , Padrões de Prática Médica/estatística & dados numéricos , Patologia da Fala e Linguagem/educação , Inquéritos e Questionários , Adulto Jovem
16.
Eur Urol ; 76(6): 831-842, 2019 12.
Artigo em Inglês | MEDLINE | ID: mdl-31537406

RESUMO

BACKGROUND: Mutations in BRCA2 cause a higher risk of early-onset aggressive prostate cancer (PrCa). The IMPACT study is evaluating targeted PrCa screening using prostate-specific-antigen (PSA) in men with germline BRCA1/2 mutations. OBJECTIVE: To report the utility of PSA screening, PrCa incidence, positive predictive value of PSA, biopsy, and tumour characteristics after 3 yr of screening, by BRCA status. DESIGN, SETTING, AND PARTICIPANTS: Men aged 40-69 yr with a germline pathogenic BRCA1/2 mutation and male controls testing negative for a familial BRCA1/2 mutation were recruited. Participants underwent PSA screening for 3 yr, and if PSA > 3.0 ng/ml, men were offered prostate biopsy. OUTCOME MEASUREMENTS AND STATISTICAL ANALYSIS: PSA levels, PrCa incidence, and tumour characteristics were evaluated. Statistical analyses included Poisson regression offset by person-year follow-up, chi-square tests for proportion t tests for means, and Kruskal-Wallis for medians. RESULTS AND LIMITATIONS: A total of 3027 patients (2932 unique individuals) were recruited (919 BRCA1 carriers, 709 BRCA1 noncarriers, 902 BRCA2 carriers, and 497 BRCA2 noncarriers). After 3 yr of screening, 527 men had PSA > 3.0 ng/ml, 357 biopsies were performed, and 112 PrCa cases were diagnosed (31 BRCA1 carriers, 19 BRCA1 noncarriers, 47 BRCA2 carriers, and 15 BRCA2 noncarriers). Higher compliance with biopsy was observed in BRCA2 carriers compared with noncarriers (73% vs 60%). Cancer incidence rate per 1000 person years was higher in BRCA2 carriers than in noncarriers (19.4 vs 12.0; p = 0.03); BRCA2 carriers were diagnosed at a younger age (61 vs 64 yr; p = 0.04) and were more likely to have clinically significant disease than BRCA2 noncarriers (77% vs 40%; p = 0.01). No differences in age or tumour characteristics were detected between BRCA1 carriers and BRCA1 noncarriers. The 4 kallikrein marker model discriminated better (area under the curve [AUC] = 0.73) for clinically significant cancer at biopsy than PSA alone (AUC = 0.65). CONCLUSIONS: After 3 yr of screening, compared with noncarriers, BRCA2 mutation carriers were associated with a higher incidence of PrCa, younger age of diagnosis, and clinically significant tumours. Therefore, systematic PSA screening is indicated for men with a BRCA2 mutation. Further follow-up is required to assess the role of screening in BRCA1 mutation carriers. PATIENT SUMMARY: We demonstrate that after 3 yr of prostate-specific antigen (PSA) testing, we detect more serious prostate cancers in men with BRCA2 mutations than in those without these mutations. We recommend that male BRCA2 carriers are offered systematic PSA screening.


Assuntos
Detecção Precoce de Câncer/métodos , Genes BRCA1 , Genes BRCA2 , Triagem de Portadores Genéticos/métodos , Mutação em Linhagem Germinativa , Neoplasias da Próstata/diagnóstico , Neoplasias da Próstata/genética , Adulto , Idoso , Humanos , Calicreínas/sangue , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Antígeno Prostático Específico/sangue , Neoplasias da Próstata/sangue
17.
Front Public Health ; 7: 119, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31179257

RESUMO

As part of a province wide rabies elimination program, rabies specific information was integrated into the curriculum of all public elementary schools in Ilocos Norte, Philippines using a specifically developed teachers' manual. The rabies educational messages included rabies, animal bite prevention, bite management and responsible pet ownership and were integrated into lessons in several subjects. Four elementary schools were randomly selected and an assessment of the change in student's rabies knowledge and animal bite incidence were conducted. The study tested all students in grades 1-5 before the curriculum integration was implemented and retested these cohorts 1 year later, after implementation. Awareness of rabies was high before the implementation, likely due to the province-wide elimination campaign. However, awareness still increased significantly across all schools, and detailed knowledge of rabies increased significantly in all but one school and age cohort. Bite incidence in the 6 months prior to each survey was also recorded and the percentage of students suffering animal bites fell significantly between the two tests. The data suggested that knowledge increase correlated with decreased bite incidence in some groups but not all, suggesting a more complex relationship between knowledge acquisition and behavioral change which warrants further investigation.

18.
Drug Saf ; 42(1): 77-83, 2019 01.
Artigo em Inglês | MEDLINE | ID: mdl-30232740

RESUMO

INTRODUCTION: Romiplostim is a subcutaneously administered thrombopoietin-receptor agonist approved in the European Union for self-administration (or administration by a caregiver) in selected adult patients with chronic primary immune thrombocytopenia refractory to other treatments. To mitigate the risk of medication errors due to self-administration, the manufacturer has implemented additional risk minimisation measures (RMM) in the form of a Home Administration Training (HAT) pack to support the training of both healthcare professionals (HCPs) (guide and checklist for patient selection and training) and patients (a preparation mat, quick guide booklet, step-by-step guide, self-administration diary and DVD/video). OBJECTIVE: The primary objective was to estimate the proportion of patients/caregivers who administered romiplostim correctly after HAT pack training. METHODS: A multicentre observational study was conducted to evaluate the effectiveness of the HAT pack by recording data on a standardised collection form during direct observation of patients/caregivers in the act of administering romiplostim at the first standard-of-care visit 4 weeks after training with the HAT pack. RESULTS: Among the 40 patients/caregivers enrolled across 12 study centres in eight European countries, 35 [87.5%; 95% confidence interval (CI) 73.9-94.5] administered romiplostim correctly, and five (12.5%; 95% CI 5.5-26.1) did not. CONCLUSION: The correct administration of romiplostim by most patients/caregivers supports the effectiveness of the HAT pack as an additional risk minimisation tool in the population and setting of this study.


Assuntos
Serviços de Assistência Domiciliar/normas , Folhetos , Educação de Pacientes como Assunto/normas , Púrpura Trombocitopênica Idiopática/tratamento farmacológico , Receptores Fc/administração & dosagem , Proteínas Recombinantes de Fusão/administração & dosagem , Trombopoetina/administração & dosagem , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Educação de Pacientes como Assunto/métodos , Púrpura Trombocitopênica Idiopática/diagnóstico , Púrpura Trombocitopênica Idiopática/epidemiologia , Autoadministração/métodos , Autoadministração/normas , Adulto Jovem
19.
J Clin Nurs ; 28(7-8): 1164-1173, 2019 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-30431190

RESUMO

AIMS AND OBJECTIVES: To review and analyse current preceptorship programmes within NHS trusts in the North West of England. To evaluate the pedagogic rigour of the programme and suggest recommendations to inform the future design of preceptorship programmes. BACKGROUND: Enhancing the retention of newly qualified staff is of particular importance given that the journey from a new registrant to a competent healthcare professional poses a number of challenges, for both the individual staff member and organisations. DESIGN: A mixed methods evaluative approach was employed, using online questionnaires and content analysis of preceptorship documentation. METHODS: Forty-one NHS trusts across the North West region employing newly qualified nurses were invited to participate in the completion of an online questionnaire. In addition, preceptorship programme documentation was requested for inclusion in the content analysis. This study used the SQUIRE (Standards for Quality Improvement Reporting Excellence) guidelines. RESULTS: The response rate for the questionnaire was 56.1% (n = 23). Eighteen trusts (43.9%) forwarded their programme documentation. Findings highlighted the wide variation in preceptorship programmes across the geographical footprint. CONCLUSIONS: There were instances of outstanding preceptorship and preceptorship programmes where there was a clear link between the strategic vision, that is, trust policy, and its delivery, that is, preceptorship offering. There was no one framework that would universally meet the needs of all trusts; yet, there are key components which should be included in all preceptorship programmes. Therefore, we would encourage innovation and creativity in preceptorship programmes, cognisant of local context. RELEVANCE TO CLINICAL PRACTICE: The significant shortage of nursing staff in England is an ongoing issue. Recruitment and retention are key to ameliorating the shortfall, and formal support mechanisms like preceptorship, can improve the retention of newly qualified staff. Understanding current preceptorship programmes is an important first step in establishing the fundamental building blocks of successful preceptorship programmes and enabling the sharing of exemplary good practice across organisations.


Assuntos
Competência Clínica , Tocologia/educação , Recursos Humanos de Enfermagem/educação , Reorganização de Recursos Humanos/estatística & dados numéricos , Preceptoria/normas , Inglaterra , Humanos , Recursos Humanos de Enfermagem/provisão & distribuição , Avaliação de Programas e Projetos de Saúde , Pesquisa Qualitativa , Inquéritos e Questionários
20.
BMJ Open ; 8(12): e024499, 2018 12 16.
Artigo em Inglês | MEDLINE | ID: mdl-30559161

RESUMO

OBJECTIVES: The Heart Manual (HM) is the UK's leading facilitated home-based cardiac rehabilitation (CR) programme for individuals recovering from myocardial infarction and revascularisation. This audit explored patient-reported outcomes of home-based CR in relation to current Scottish, UK and European guidelines. SETTING: Patients across the UK returned their questionnaire after completing the HM programme to the HM Department (NHS Lothian). PARTICIPANTS: Qualitative data from 457 questionnaires returned between 2011 and 2018 were included for thematic analysis. Seven themes were identified from the guidelines. This guided initial deductive coding and provided the basis for inductive subthemes to emerge. RESULTS: Themes included: (1) health behaviour change and modifiable risk reduction, (2) psychosocial support, (3) education, (4) social support, (5) medical risk management, (6) vocational rehabilitation and (7) long-term strategies and maintenance. Both (1) and (2) were reported as having the greatest impact on patients' daily lives. Subthemes for (1) included: guidance, engagement, awareness, consequences, attitude, no change and motivation. Psychosocial support comprised: stress management, pacing, relaxation, increased self-efficacy, validation, mental health and self-perception. This was followed by (3) and (4). Patients less frequently referred to (5), (6) and (7). Additional themes highlighted the impact of the HM programme and that patients attributed the greatest impact to a combination of all the above themes. CONCLUSIONS: This audit highlighted the HM as comprehensive and inclusive of key elements proposed by Scottish, UK and EU guidelines. Patients reported this had a profound impact on their daily lives and proved advantageous for CR.


Assuntos
Reabilitação Cardíaca/normas , Serviços Hospitalares de Assistência Domiciliar/organização & administração , Infarto do Miocárdio/reabilitação , Medidas de Resultados Relatados pelo Paciente , Guias de Prática Clínica como Assunto , Reabilitação Cardíaca/métodos , Auditoria Clínica , Europa (Continente) , Comportamentos Relacionados com a Saúde , Serviços Hospitalares de Assistência Domiciliar/economia , Humanos , Cooperação do Paciente , Educação de Pacientes como Assunto , Avaliação de Programas e Projetos de Saúde , Pesquisa Qualitativa , Gestão de Riscos , Escócia , Apoio Social , Inquéritos e Questionários , Reino Unido
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