bluuebunny/crossref_metadata_2025_split huggingface dataset:
SINDICÂNCIA SIMULADA: UMA COLABORATIVA ESTRATÉGIA EDUCACIONAL PARA APRENDIZAGEM EM ÉTICA MÉDICA E BIOÉTICA
Authors: Dantas Flávio 
Published: November 2022

O ensino da medicina no Brasil deve associar o conteúdo técnico com a formação ética, valendo-se de métodos ativos de aprendizagem que permitam aquisição de conhecimentos, desenvolvimento de atitudes corretas, reflexão crítica e consciente para deliberações que sejam tecnicamente acertadas e eticamente adequadas a cada situação. Queixas de usuários de serviços médicos, ou de profissionais da saúde, sobre eventuais desvios éticos são apuradas e depois julgadas em câmaras de sindicâncias nos Conselhos Regionais de Medicina. O método da sindicância simulada se caracteriza por permitir a cada participante num grupo, de modo ativo e colaborativo, a análise ponderada sobre fatos e circunstâncias relatadas no exercício da profissão médica à luz das normas éticas vigentes no Brasil. A estratégia educacional da simulação de câmaras de sindicâncias visa facilitar a aquisição de conhecimentos sobre as vigentes normas éticas, processuais e legais aplicáveis à profissão médica no Brasil, favorecendo o desenvolvimento de atitudes eticamente justificáveis após reflexão, ponderação e deliberação colegiada sobre situações descritas para apuração de eventual existência de infrações éticas. Pode também auxiliar na prevenção de futuras ocorrências de desvios éticos e na preparação de manifestações dos médicos diante de eventuais denúncias. O artigo aborda as características das sindicâncias, possibilidades e limitações da aplicação do método da sindicância simulada e sua importância na conexão entre a finalidade legal dos Conselhos de Medicina e as necessidades de escolas médicas e programas de pós-graduação em medicina, ensejando uma efetiva colaboração entre as instâncias formadoras e reguladoras da profissão médica para desenvolver o processo de tomada de decisões éticas.
The patient gene therapy journey: Findings from qualitative interviews with trial participants at one UK haemophilia centre
Authors: Aradom Elsa , Gomez Keith 
Published: November 2022

Abstract

Introduction
Gene therapy for haemophilia is in late-stage clinical development and has the potential to become a therapeutic option in clinical practice.

Aims
To enhance the understanding of the perspectives of people with haemophilia around gene therapy, and to highlight their concerns about and motivations for having gene therapy.

Method
Structured, qualitative interviews were conducted and recorded with six people who had received an investigational gene therapy product. The recordings were transcribed and thematically analysed.

Results
Most of those interviewed were under the age of 40, and the mean time out from their gene therapy infusion was 10 months. Adverse events were the main concerns pre-infusion, and impact on quality of life was the main motivating factor for choosing to go ahead. Pre-infusion, the treating centre and the health care professionals working there were the main source of information regarding gene therapy; only two participants looked elsewhere for information to support their decision. None of the respondents expressed concerns about the infusion day itself, and all found the infusion to be simple or uneventful. Post-infusion, four found the frequency of follow-up appointments difficult, with time and travel the main issues.

Conclusion
Although participants' perspectives on gene therapy were generally positive, there remains a need for education and support. Nurses will play an important role in the delivery of gene therapy for haemophilia, but all staff within the haemophilia treatment centre should be armed with the knowledge and confidence to answer questions about gene therapy.
The potential impact of gene therapy on health-related quality of life (HRQoL) domains in haemophilia
Authors: Bullinger Monika , Gardner Diandra Latibeaudiere , Lewis Hannah B , Miesbach Wolfgang , Nolte Sandra , O’Hara Jamie , O’Mahony Brian , Pollard Debra , Skinner Mark , Quinn Jennifer 
Published: November 2022

Abstract

Introduction
Haemophilia is an inherited bleeding disorder characterised by spontaneous bleeding, often leading to impaired health-related quality of life (HRQoL). Commonly used treatments include episodic and prophylactic treatment regimens. Gene therapies could soon become available, potentially creating a paradigm shift in patient management.

Aim
This paper proposes hypotheses about the potential impact of gene therapy on HRQoL domains in haemophilia, and how these impacts might differ compared with existing treatments.

Methods
An expert working group with 10 individuals experienced in haemophilia and HRQoL research was established to discuss potential impacts of gene therapy on HRQoL in general and for specific domains in haemophilia. As part of a one-day workshop, domains of three widely used patient-reported outcome (PRO) instruments were explored: the Haemo-QoL-A, the Patient Reported Outcomes, Burden and Experiences (PROBE), and the Haemophilia Activities List (HAL).

Results
The group expected a greater improvement in HRQoL from gene therapy compared with existing treatments for the following domains: physical/role functioning, worry, and consequences of bleeding (Haemo-QoL-A); haemophilia-related health and EQ-5D-5L (part of the PROBE); leg and arm function, and leisure activities (HAL). In contrast, the experts suggested that no change or potential deterioration might be observed for the emotional impact (HAL) and treatment concerns (Haemo-QoL-A) domains.

Conclusions
Current PRO instruments in haemophilia have limitations when applied in the context of gene therapy, and no single instrument fully captures the relevant HRQoL domains. However, the PROBE and Haemo-QoL-A were considered as the most suitable existing instruments. As haemophilia treatments evolve, further research should examine the potential effectiveness of existing PRO instruments as compared to the development of novel PRO measures.
Dental extraction in congenital factor Vll deficiency with inhibitor – a case report
Authors: Nayar Geeta , Pillai Vijayakumar Narayana , Mathew Sheena , Menon Gokul Das 
Published: November 2022

Abstract

Background
Hereditary factor VII (FVII) deficiency is a rare bleeding disorder with autosomal recessive inheritance, and FVII deficiency with an inhibitor is extremely rare. There is sparse information in the literature on the management of tooth extraction in patients with FVII deficiency and an inhibitor.

Case description
We report the case of a five-year-old child with FVII deficiency and an inhibitor who underwent dental extraction. The child had had multiple bleeding episodes including intracranial haemorrhage and had a history of severe allergic reaction to the infusion of recombinant FVII. The tooth was extracted using lignocaine gel and the antifibrinolytic agent oral tranexamic acid.

Conclusion
The extraction of a deciduous tooth in a patient with FVII deficiency and an inhibitor was undertaken without bleeding complications. There are currently no guidelines regarding management of this type of case. Further studies and evidence are required so that management can be standardised.
Web-based Application for the Population Pharmacokinetic Service (WAPPS)'s impact on dosage selection: a single paediatric centre experience
Authors: Kwan Celia , Bhatt Mihir D. , Strike Karen , Decker Kay , Matino Davide , Chan Anthony K.C. 
Published: November 2022

Abstract

Background
Current treatment for severe haemophilia includes prophylactic factor replacement to prevent bleeding. Coagulation factor products have significant inter-patient variability in pharmacokinetic (PK) parameters. Optimal management requires tailoring prophylaxis to individual PK parameters. Web-based Application for the Population Pharmacokinetic Service (WAPPS) is a tool that estimates individual PK values using a population approach. Despite its growing use to help guide dosing selection, few studies have investigated its clinical impact.

Aim
To investigate any change in prophylaxis regimen and hours per week where factor level is under 1%, pre- and post-PK testing using WAPPS, for paediatric patients with severe haemophilia.

Methods
A retrospective chart review was conducted for all paediatric patients with severe haemophilia receiving care between April 2013 and July 2018 at McMaster Children's Hospital who have used WAPPS. Data extracted included: patient demographics, PK data generated by WAPPS, prophylaxis regimen pre- and post-PK testing, and reason for regimen change. The number of hours per week where factor level was under 1% pre- and post-PK testing was calculated using WAPPS.

Results
Thirty-one patients were included; 42% (n=13) changed their prophylaxis regimen after PK testing. After using PK data to personalise prophylaxis recommendations, there was a decrease in the number of hours per week where factor level is under 1% (from an average of 13.1 hours/week to 11.8 hours/week), though not statistically significant (p=0.16).

Conclusion
PK data generated by WAPPS has direct impact by informing changes to prophylaxis recommendations. This individualised approach promotes patient-centred care and patient engagement without increasing the time spent with factor levels below 1%. It also confirms and validates clinical practice.
The use of rIX-FP in patients with haemophilia B: a nurse's perspective
Authors: Garner Kara , Guelcher Christine , Pollard Debra 
Published: November 2022

Abstract
The management of patients with haemophilia is complex and requires lifelong care to be delivered by a specialist multidisciplinary team. Haemophilia B results from a deficiency or absence in coagulation factor IX (FIX), leading to easy bruising, and musculoskeletal and internal bleeding. For patients with severe or moderate haemophilia B, prophylaxis with standard half-life (SHL) coagulation FIX products requires frequent intravenous administration, which may negatively impact treatment adherence and increase burden of care. A recombinant fusion protein linking recombinant FIX (rFIX) with recombinant human albumin, rIX-FP, has an extended half-life compared with SHL rFIX, and has demonstrated a favourable safety and efficacy profile for the prevention and treatment of bleeding episodes in phase III and real-world studies of patients with severe haemophilia B. rIX-FP enables treatment to be tailored to the needs of individual patients, with dosing flexibility allowing selected patients to be treated with prophylaxis dosing intervals of 7, 10, 14 or 21 days. Patients switching to rIX-FP can reduce their annualised bleeding rate and some have successfully reduced their prophylactic dosing frequency while maintaining low bleeding rates and consistent factor consumption. This may ultimately minimise the occurrence of haemophilic arthropathy and improve patient quality of life. Educating patients and caregivers on the sustained use of rIX-FP prophylaxis is essential. The lifelong support and guidance provided by healthcare professionals at haemophilia treatment centres (HTCs) are critical for providing an optimal treatment approach that can increase adherence to treatment. This article reviews the pharmacokinetics, efficacy, and safety of rIX-FP demonstrated in clinical trials and clinical practice, and discusses haemophilia nurses’ clinical experiences with rIX-FP in patients in their HTCs.
Teenage pregnancies - A peril in covid pandemic
Authors: Limmala Rani Kumari , Vellanki Janaki 
Published: November 2022

Teenage pregnancy is a global problem and is a high risk group. Adolescent pregnancy occurs when a teenager or underage girl, usually between the ages of 13 and 19, becomes pregnant. Adolescent pregnancies are more likely to occur in the marginalized communities commonly driven by poverty, lack of education and employment opportunities. Adolescent mothers aged 10-19years face higher risk of anemia, eclampsia, puerperal endometritis and systemic infections than women aged 20-24 years, as they have not completed their own development to give birth to another life.A retrospective study was undertaken in department of obstetrics and gynecology of Gandhi Medical College during period of April 2019 to April 2022. Out of the 38 cases, 18 cases were admitted during the year 2021 which was post COVID period these cases were the after effect of the consequences patients faced during the COVID season. The minimum age recorded during study period was 12 years, and maximum number of patients belonged to age group of 17 years (21%) and 19 years (21%). 17 Cases (45%) reported to the hospital during the second trimester. 22 cases were aborted.8 cases delivered at term. Complications like anemia were seen in few patients.: Sex education for adolescent, support by talking about sex, with education about HIV, STI, contraception is cornerstone to prevent teenage pregnancies. Brining families and communities together to address topic on sexuality without any socio cultural resistance, talk about health risks of unprotected sex and teenage pregnancies is needed. An additional cause of unintended pregnancy is sexual violence, which is widespread with more than third of girls in some countries reporting that their first sexual intercourse was coerced which is still only the tip of the iceberg which is a serious issue to be addressed.
A study of foetomaternal outcome among pregnant hypothyroid women
Authors: Vangani Veena , Vangani Mahendra , Vangani Bhavya 
Published: November 2022

During pregnancy one of the most common endocrinological disorder which are very often overlooked during pregnancy because of their nonspecific symptoms and the hypermetabloic state of pregnancy is Thyroid disorder. Optimal maternal thyroid function during pregnancy is important for both the mother and fetus.The study was planned to determine the prevalence of hypothyroidism using the classical reference range of normal serum TSH as 0.4-6.2μIU/L. It also aimed to study the foetomaternal outcome among pregnant hypothyroid women, using the classical reference range and a lower cut off (&#60;3μIU/L) of TSH for diagnosing hypothyroidism in pregnancy.This was a longitudinal prospective study conducted in the Department of Obstetrics & Gynaecology, Suryanagari Hospital, in collaboration with the Departments of Endocrinology, Laboratory Medicine & Paediatrics. Before starting the study, clearance was taken from ethical committee of the hospital. A total of 522 pregnant women attending the antenatal OPD were recruited to determine the prevalence of hypothyroidism on the basis of TSH evaluation. With our study we concluded that these very high prevalence of hypothyroidism in India and routine maternal thyroid function testing must be done as soon as pregnancy is confirmed thus saving lives of many infants who could lead rest of their lives happily and prosperously.
A study of frequency, indication and maternal outcome in emergency peripartum hysterectomy in a tertiary care hospital
Authors: Bharathi R  , Jayabharathi R  
Published: November 2022

Antepartum and postpartum haemorrhage are life threatening condition. Obstetric haemorrhage often ends with Peripartum hysterectomy which is done to save the mother if medical and conservative surgical management fails. This study was done to analyse the frequency, indications and associated complications of peripartum hysterectomy. This retrospective study is conducted in the Department of Obstetrics and Gynecology, Government Medical College Hospital, Kallakurichi, Tamil Nadu, over a period of one year from March 2021 to February 2022.: Total mothers delivered during the study period was 8174. Emergency peripartum hysterectomy was performed in 28 women. Incidence of peripartum hysterectomy is 3.42/1000 deliveries (0.34%). Most were in the age group of 21-30 years. Majority of patients were multigravida. Most common cause for peripartum hysterectomy was atonic postpartum haemorrhage. Most common postoperative complication was post operative febrile illness.Peripartum Hysterectomy for control of obstetric haemorrhage is a lifesaving procedure, However it is usually associated with significant morbidity and mortality. This can be reduced by effective antenatal care, tracking of high risk mothers and reduction of primary caesarean delivery as it has significant impact women’s child bearing and reproductive life.
Evaluation of the predictive value of uterine artery doppler in second trimester of pregnancy as a screening tool for preeclampsia
Authors: Kumar Kasiviswanathan Mohan , Krishnamurthy Aparna , Sharma Rajat Kumar , Maiti Gunadhar 
Published: November 2022

This study was carried out to determine the validity and reliability of Uterine Artery (UtA) Doppler imaging as a screening tool for predicting preeclampsia among pregnant women attending a tertiary care hospital of the Armed Forces in second trimester.Our study was a prospective diagnostic study carried out in 680 pregnant women (age group of 19 to 30 years) in second trimester. Maternal BP was recorded using automated BP apparatus on three occasions (15 minutes apart) in supine posture. This was followed by uterine artery Doppler with measurement of Resistivity index (RI) and Pulsatility index (PI). Patients were followed up every month till 12 weeks post-partum. Statistical analysis was done using SPSS version 21. The mean uterine artery PI was 1.21±0.296 and the mean uterine artery RI value was observed to be 0.58±0.18. The incidence of preeclampsia among the study participants was observed to be 9.9%. The mean uterine artery PI and RI among patient with preeclampsia was found to be significantly higher than those without preeclampsia (p value &#60;0.001). The uterine artery PI values of ≥1.3 when defined as a diagnostic cut off, the sensitivity and specificity was found to be 79.1% and 70.8% respectively. The accuracy was observed to be 71.62%. The uterine artery RI values of ≥0.7 when defined as a diagnostic cut off, the sensitivity and specificity was found to be 44.78% and 89.72% respectively. The accuracy was observed to be 85.29%. Uterine artery PI parameter is found to have better sensitivity than RI in predicting preeclampsia. Consideration of both PI and RI parameters for prediction of preeclampsia significantly increased the specificity of Uterine Artery Doppler Imaging. Uterine Artery Doppler is a useful tool in predicting the risk of preeclampsia among women in second trimester of pregnancy.
Effectiveness of self instructional module on knowledge of menstrual disorders among adolescent girls
Authors: Mehazbeen  
Published: November 2022

Menstruation is a normal monthly cycle in women. Women between puberty and menopause experiences menstruation. It can start between the age of 8-13 and last until between 45-55 years. Though menstruation is normal, some women experience dilemma during their monthly period like, menstrual cramps, or dysmenorrhoea or other menstrual disorders. The menstrual cramps may be severely painful and can interfere with regular activities, sometimes leading to absenteeism in school or in other functions A self instructional module will help the adolescent girls to gain knowledge about menstrual disorders and to seek medical advice promptly whenever needed. The present study was undertaken to evaluate the effectiveness of self instructional module on knowledge of menstrual disorders among adolescent girls.This study made use of an evaluative approach with a one group pre-test post-test design. The sample for the study sample comprised of 60 adolescent girls. A disproportionate stratified random sampling technique was used to select 30 I PUC and 30 II PUC adolescent girls. Students were selected randomly by lottery method from each stratum of I PUC and II PUC. The tool and SIM were validated by 10 experts. Pre-testing and reliability of the tool was established prior to the pilot study. Pilot study was conducted among twelve adolescent girls. This gave a basis for the investigator to conduct the actual study. The actual study was conducted among 60 adolescent girls. Following the pre-test, SIM was administered and post-test conducted seven days after the administration of SIM. The obtained data was analyzed in terms of the objectives and hypotheses using descriptive and inferential statistics.The findings of the study showed that SIM is an effective teaching strategy to increase the knowledge of adolescent girls on menstrual disorders.The findings of the study proved that adolescent girls lacked knowledge on menstrual disorders. The SIM given by the investigator helped the adolescent girls to improve their knowledge. The effectiveness of SIM was tested in terms of gain in knowledge and the findings showed that it was statistically significant at 0.05 level of significance. The findings of the study proved that SIM is an effective strategy in improving the knowledge of the adolescent girls. All the subjects had a gain in knowledge compared to their pre-test knowledge scores. On the whole, carrying out the present study was really an enriching experience to the investigator. It also helped a great deal to explore and improve the knowledge of the researcher and the respondents. The constant encouragement and guidance by the guide, co-operation and interest of respondents in the study contributed to the fruitful completion of the study.
Study of polyps in female reproductive tract in a tertiary care centre
Authors: Deepthi G N  , Sunanda N  
Published: November 2022

To study the clinical presentation, management of polyps of female reproductive tract. To know the correlation between ultrasonological finding and Histopathological findings. This was a retrospective hospital based observational study. It was conducted in Cheluvamba hospital, attached to Mysore Medical college and Research Institute, Mysore. Data was collected from hospital registers who underwent surgery for diagnosis of polyp from the year 2018 to 2021 were included in the study. There were 50 cases in the study. They were managed according to their symptoms, age, desire for fertility and type of polyp. Polyps are most common in the age group 31 to 40 years (42%) and in parous women. The most common presenting complaint was heavy menstrual bleeding (82%). Based on USG and HPE the most common type of polyp was leiomyomatous polyp. Heavy menstrual bleeding caused severe anaemia in 44% of women who required blood transfusion for correction anaemia. No cases of malignancy were diagnosed.Polyps are an important cause of AUB. The resulting heavy menstrual bleeding can cause severe anaemia requiring blood transfusion, leading to morbidity. Clinical examination and ultrasound diagnosis correlates with histopathological diagnosis. Using clinical examination and ultrasound one can identify the site and type of polyp and decide on further management.