scholarly journals Results of a PREM to measure the rare disease patients’ caregivers experience: A Spanish cross-sectional study

2020 ◽  
Author(s):  
Mercedes Guilabert Mora ◽  
Alba Martínez-García ◽  
Marina Sala-González ◽  
Olga Solas ◽  
José Joaquín Mira
Keyword(s):  
Rare Disease ◽  
Rare Diseases ◽  
Response Rate ◽  
Paediatric Population ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Optimal Care ◽  
Cross Sectional ◽  
The Mean ◽  
Mean Time

Abstract Objective To measure the experience of the person suffering from a rare disease in order to identify objectives for optimal care in the health care received by these patients. Methods. A cross-sectional study was conducted in Spain involving patients associated with the Spanish Rare Diseases Federation [Federación Española de Enfermedades Raras] (FEDER). A modified version of the PREM IEXPAC instrument was used (IEXPAC-rare-diseases). Scores ranged between 0 (worst experience) and 10 (best experience).Results A total of 261 caregivers (in the case of paediatric population) and patients with rare diseases (response rate 54.4%) replied. Most males, 227 (87%), with an average age of 38 (SD 13.6) years. The mean time since confirmation of diagnosis was 7.8 (SD 8.0) years. The score in this PREM was 3.5 points out to 10 (95%CI 3.2-3.8, SD 2.0). Caregivers of paediatric patients scored higher, except for coordination of social and healthcare services.Conclusions There are wide and important areas for improvement in the care of patients with rare diseases. This study involves a first assesment of the experience of patients with rare diseases in Spain.

scholarly journals Results of a Patient Reported Experience Measure (PREM) to measure the rare disease patients and caregivers experience: a Spanish cross-sectional study

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Mercedes Guilabert ◽  
Alba Martínez-García ◽  
Marina Sala-González ◽  
Olga Solas ◽  
José Joaquín Mira
Keyword(s):  
Rare Disease ◽  
Rare Diseases ◽  
Healthcare Services ◽  
Paediatric Population ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Optimal Care ◽  
Cross Sectional ◽  
Patient Reported ◽  
Mean Time

Abstract Objective To measure the experience of the person having a rare disease in order to identify objectives for optimal care in the health care received by these patients. Methods. A cross-sectional study was conducted in Spain involving patients associated with the Spanish Rare Diseases Federation [Federación Española de Enfermedades Raras] (FEDER). A modified version of the PREM IEXPAC [Instrumento para evaluar la Experiencia del Paciente Crónico] instrument was used (IEXPAC-rare-diseases). Scores ranged between 0 (worst experience) and 10 (best experience). Results A total of 261 caregivers (in the case of paediatric population) and patients with rare diseases (response rate 54.4%) replied. 232 (88.9%) were adult patients and 29 (11.1%) caregivers of minor patients. Most males, 227 (87%), with an average age of 38 (SD 13.6) years. The mean time since confirmation of diagnosis was 7.8 (SD 8.0) years. The score in this PREM was 3.5 points out to 10 (95%CI 3.2–3.8, SD 2.0). Caregivers of paediatric patients scored higher, except for coordination of social and healthcare services. Conclusions There are wide and important areas for improvement in the care of patients with rare diseases. This study involves a first assesment of the experience of patients with rare diseases in Spain.

scholarly journals Results of a Patient Reported Experience Measure (PREM) to measure the rare disease patients and caregivers experience: A Spanish cross-sectional study

2021 ◽  
Author(s):  
Mercedes Guilabert Mora ◽  
Alba Martínez-García ◽  
Marina Sala-González ◽  
Olga Solas ◽  
José Joaquín Mira
Keyword(s):  
Rare Disease ◽  
Rare Diseases ◽  
Healthcare Services ◽  
Paediatric Population ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Optimal Care ◽  
Cross Sectional ◽  
Patient Reported ◽  
Mean Time

Abstract Objective. To measure the experience of the person having a rare disease in order to identify objectives for optimal care in the health care received by these patients. Methods. A cross-sectional study was conducted in Spain involving patients associated with the Spanish Rare Diseases Federation [Federación Española de Enfermedades Raras] (FEDER). A modified version of the PREM IEXPAC [Instrumento para evaluar la Experiencia del Paciente Crónico] instrument was used (IEXPAC-rare-diseases). Scores ranged between 0 (worst experience) and 10 (best experience).Results. A total of 261 caregivers (in the case of paediatric population) and patients with rare diseases (response rate 54.4%) replied. 232 (88.9%) were adult patients and 29 (11.1%) caregivers of minor patients. Most males, 227 (87%), with an average age of 38 (SD 13.6) years. The mean time since confirmation of diagnosis was 7.8 (SD 8.0) years. The score in this PREM was 3.5 points out to 10 (95%CI 3.2-3.8, SD 2.0). Caregivers of paediatric patients scored higher, except for coordination of social and healthcare services.Conclusions. There are wide and important areas for improvement in the care of patients with rare diseases. This study involves a first assesment of the experience of patients with rare diseases in Spain.

scholarly journals Judicial demand of medications through the Federal Justice of the State of Paraná

2017 ◽  
Vol 15 (1) ◽  
pp. 85-91 ◽  
Author(s):  
Renato Mitsunori Nisihara ◽  
Ana Carolina Possebom ◽  
Luiza de Martino Cruvinel Borges ◽  
Ana Claudia Athanasio Shwetz ◽  
Fernanda Francis Benevides Bettes
Keyword(s):  
Cross Sectional Study ◽  
The State ◽  
Brand Name ◽  
Sectional Study ◽  
Cross Sectional ◽  
The Public ◽  
Online System ◽  
Broad Variety ◽  
The Mean ◽  
Mean Time

ABSTRACT Objective To describe the profile of lawsuits related to drug requests filled at the Federal Justice of the State of Paraná. Methods A cross-sectional study, and the data were obtained through consulting the lawsuits at the online system of the Federal Justice of Paraná. Results Out of 347 lawsuits included in the study, 55% of plaintiffs were women, with a median age of 56 years. Oncology was the field with more requests (23.6%), and the highest mean costs. A wide variety of diseases and broad variety of requested drugs were found in the lawsuits. Approximately two-thirds of them were requested by the brand name, and the most often requested drugs were palivizumab and tiotropium bromide. Only 14.5% of the requested medicines were registered in the National Medication Register. The Public Defender’s Office filled actions in 89.6% of cases and all lawsuits had an interim relief. The mean time for approval was 35 days and 70% of requests were granted. Conclusion Oncology was the field with the highest demand for medicines at the Federal Justice of Paraná in 2014. A great variety of medications was requested. The Public Defender´s Office represented most lawsuits. All demands had an interim relief, and the majority of requests were granted, within an average of 35 days.

Ocular motility disturbances after glaucoma drainage device implantation for paediatric glaucoma: a cross-sectional study

2020 ◽  
pp. bjophthalmol-2020-317356
Author(s):  
Kate Elspeth Leahy ◽  
Katelyn MacNeill ◽  
Jeff Locke ◽  
Stephanie Sobey ◽  
Stephen P Kraft ◽  
...  
Keyword(s):  
Mass Effect ◽  
Paediatric Population ◽  
Cross Sectional Study ◽  
Glaucoma Drainage Device ◽  
Ocular Motility ◽  
Sectional Study ◽  
Cross Sectional ◽  
Drainage Device ◽  
Device Implantation ◽  
Mean Time

AimTo grade extraocular motility in the field of action of each extraocular muscle following superotemporal glaucoma drainage device (GDD) implantation in a paediatric population and to investigate which drainage device (Ahmed vs Baerveldt) yields less extraocular motility disturbance.MethodsCross-sectional study of children with a GDD implanted consecutively by a single surgeon who underwent ocular motility examination by two masked orthoptists. Ductions in the cardinal positions were graded. Ocular alignment, visual acuity, binocularity, stereopsis and intraocular pressure were also measured, and patient charts were reviewed.ResultsThirty children each had one eye included. Twenty-one eyes had an Ahmed GDD and 9 had a Baerveldt GDD. Mean time between GDD insertion and ocular motility exam was 68 months in the Ahmed group and 19 months in the Baerveldt group. Exotropia was present in 46% and vertical heterotropia in 46% of children post-GDD insertion. Thirty-three percent of eyes had a moderate or severe limitation of elevation in abduction, 30% of elevation in adduction, 10% of abduction and 10% of adduction. There was a trend towards more eyes in the Ahmed group (62%) having at least a moderate limitation in ocular motility (−2 or worse; scale −1 to −4) compared with the Baerveldt group (22%).ConclusionStrabismus is common in children with GDDs. Our motility and alignment findings are consistent with either a mass effect of the device and bleb and/or scarring beneath the plate in the quadrant of the GDD causing dysmotility, most commonly limitation towards the GDD.

scholarly journals Perceptions of pharmacy clerkship students and clinical preceptors regarding preceptors’ teaching behaviors at Gondar University in Ethiopia

2016 ◽  
Vol 13 ◽  
pp. 9 ◽  
Author(s):  
Tadesse Melaku ◽  
Akshaya Srikanth Bhagavathula ◽  
Yonas Getaye ◽  
Sewunet Admasu ◽  
Ramadan Alkalmi
Keyword(s):  
Response Rate ◽  
Clinical Skills ◽  
Cross Sectional Study ◽  
Teaching Skills ◽  
Sectional Study ◽  
Teaching Behaviors ◽  
Short Term ◽  
Cross Sectional ◽  
The Mean ◽  
Structured Questionnaire

This study aimed to compare the perceptions of pharmacy clerkship students and clinical preceptors of preceptors’ teaching behaviors at Gondar University. A cross-sectional study was conducted among pharmacy clerkship students and preceptors during June 2014 and December 2015. A 52-item structured questionnaire was self-administered to 126 students and 23 preceptors. The responses are presented using descriptive statistics. The Mann-Whitney U test was applied to test the significance of differences between students and preceptors. The response rate was 89.4% for students and 95.6% for preceptors. Statistically significant differences were observed in the responses regarding two of the five communication skills that were examined, six of the 26 clinical skills, and five of the 21 parameters involving feedback. The mean scores of preceptors (2.6/3) and students (1.9/3) regarding instructors’ ability to answer questions were found to be significantly different (P= 0.01). Students and preceptors gave mean scores of 1.9 and 2.8, respectively, to a question regarding preceptors’ application of appropriate up-to-date knowledge to individual patients (P= 0.00). Significant differences were also noted between students and instructors regarding the degree to which preceptors encouraged students to evaluate their own performance (P= 0.01). Discrepancies were noted between students and preceptors regarding preceptors’ teaching behaviors. Preceptors rated their teaching behaviors more highly than students did. Short-term training is warranted for preceptors to improve some aspects of their teaching skills.

scholarly journals Pediatrician's knowledge on the management of the infant who cries excessively in the first months of life

2014 ◽  
Vol 32 (2) ◽  
pp. 187-192 ◽  
Author(s):  
Ana Carolina C. Marcon ◽  
Mário César Vieira ◽  
Mauro Batista de Morais
Keyword(s):  
Diagnostic Tests ◽  
Ph Monitoring ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Cross Sectional ◽  
Brazilian Society ◽  
Esophageal Ph ◽  
Infant Colic ◽  
The Mean ◽  
Mean Time

OBJECTIVE: To evaluate the attitude, the practice and the knowledge of pediatricians regarding the management of the infant who cries excessively in the first months of life.METHODS: Descriptive cross-sectional study that enrolled pediatricians (n=132) randomly interviewed at a Pediatric meeting in Brazil, in August 2012. The data were collected by a self-administered standardized form after reading the hypothetical case of an infant who cried excessively.RESULTS: The majority of the participants were females, the mean age was 39 years and the average mean time working in the specialty was 14 years; 52.2% were Board Certified by the Brazilian Society of Pediatrics. The diagnosis most often considered was gastroesophageal reflux disease (62.9%), followed by infant colic (23.5%) and cow's milk allergy (6.8%). The diagnostic test most frequently mentioned was 24-hour esophageal pH-monitoring (21.9%). The medications most frequently indicated were domperidone (30.3%), the combination of domperidone with ranitidine (12.1%) and paracetamol (6%).CONCLUSIONS: In the approach of the infant who cries excessively, diagnostic tests are frequently requested and unnecessary medical treatment is usually recommended.

scholarly journals Impact of single and combined rare diseases on adult inpatient outcomes: a retrospective, cross-sectional study of a large inpatient population

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Reka Maria Blazsik ◽  
Patrick Emanuel Beeler ◽  
Karol Tarcak ◽  
Marcus Cheetham ◽  
Viktor von Wyl ◽  
...  
Keyword(s):  
Rare Disease ◽  
Rare Diseases ◽  
Cross Sectional Study ◽  
Hospital Death ◽  
Sectional Study ◽  
Cross Sectional ◽  
Inpatient Outcomes ◽  
Increased Risk ◽  
Icd 10 ◽  
The Impact

Abstract Background Little is known about the impact of rare diseases on inpatient outcomes. Objective To compare outcomes of inpatients with 0, 1, or > 1 rare disease. A catalogue of 628 ICD-10 coded rare diseases was applied to count rare diseases. Design Retrospective, cross-sectional study. Subjects 165,908 inpatients, Swiss teaching hospital. Main measures Primary outcome: in-hospital mortality. Secondary outcomes: length of stay (LOS), intensive care unit (ICU) admissions, ICU LOS, and 30-day readmissions. Associations with single and combined rare diseases were analyzed by multivariable regression. Key results Patients with 1 rare disease were at increased risk of in-hospital death (odds ratio [OR]: 1.80; 95% confidence interval [CI]: 1.67, 1.95), combinations of rare diseases showed stronger associations (OR 2.78; 95% CI 2.39, 3.23). Females with 1 rare disease had an OR of 1.69 (95% CI 1.50, 1.91) for in-hospital death, an OR of 2.99 (95% CI 2.36, 3.79) if they had a combination of rare diseases. Males had an OR of 1.85 (95% CI 1.68, 2.04) and 2.61 (95% CI 2.15, 3.16), respectively. Rare diseases were associated with longer LOS (for 1 and > 1 rare diseases: increase by 28 and 49%), ICU admissions (for 1 and > 1: OR 1.64 [95% CI 1.57, 1.71] and 2.23 [95% CI 2.01, 2.48]), longer ICU LOS (for 1 and > 1 rare diseases: increase by 14 and 40%), and 30-day readmissions (for 1 and > 1: OR 1.57 [95% CI 1.47, 1.68] and 1.64 [95% CI 1.37, 1.96]). Conclusions Rare diseases are independently associated with worse inpatient outcomes. This might be the first study suggesting even stronger associations of combined rare diseases with in-hospital deaths, increased LOS, ICU admissions, increased ICU LOS, and 30-day readmissions.

scholarly journals Tamsulosin in the management of distal ureteric calculi

2015 ◽  
Vol 1 (2) ◽  
pp. 19-22 ◽  
Author(s):  
Narayan Thapa ◽  
Bharat Bhandari ◽  
Bhairab Kumar Hamal
Keyword(s):  
Cross Sectional Study ◽  
Urinary Stone ◽  
Ureteral Stones ◽  
Sectional Study ◽  
Cross Sectional ◽  
X Ray ◽  
Group I ◽  
Ureteric Calculi ◽  
The Mean ◽  
Mean Time

Introductions: Ureteral stones account for 20% urinary stone. Two third of ureteral stones are seen in lower third of ureter. Medical expulsive therapy is effective for such stones. This study was designed to observe the efficacy of ‘tamsulosin’ a selective alpha-1 adrenoreceptor antagonist in the management of lower ureteric stone.Methods: A cross sectional study of 70 cases of distal ureteral stones of sizes 5 to 10 mm was taken in the Department of Surgery of Shree Birendra Hospital, Nepalese Army Institute of Health Sciences (NAIHS) from January 2011 to 2013. Patients were randomly divided into tamsulosin and analgesic only groups. Stone expulsion at the end of three weeks was confirmed by X-ray or Ultrasonography.Results: Out of 70 patients, stone clearance rate in tamsulosin group was 28 in 35 cases (80%) and 21 in 35 cases (60%) in group II with analgesic only. The mean time of stone expulsion was 8.3 days in group I and 13.5 days in group II.Conclusions: In this study the use of tamsulosin in treatment of lower ureteral stones less than 10 mm was safe and effective.

Spatial Analysis of Geographic Distribution and Accessibility of Suspected Acute Stroke Patients Transferred to Acute Stroke Centers by Emergency Medical Services in Tehran, Iran: A Cross-Sectional Study

2020 ◽  
Vol 22 (7) ◽  
Author(s):  
Pir-Hossein Kolivand ◽  
Hassanali Faraji Sabokbar ◽  
Peyman Saberian ◽  
Mahdi Bahmanabadi ◽  
Parisa Hasani-Sharamin ◽  
...  
Keyword(s):  
Acute Stroke ◽  
Cross Sectional Study ◽  
Time Of Arrival ◽  
Sectional Study ◽  
Stroke Patients ◽  
The West ◽  
Cross Sectional ◽  
The Mean ◽  
Stroke Center ◽  
Mean Time

Objectives: We intended to map the geographical distribution of patients with acute stroke who called the Tehran EMS center based on the geographic information of the incident location on a map. The distributions of these centers and patients’ access within a standard period were evaluated. Methods: A cross-sectional study based on the registered data was conducted on suspected acute stroke patients > 18 years of age that were transferred by EMS. The analysis was performed based on pointing the patients’ locations and locating the hospitals in ArcGIS software plus a review of the polygons and focal points. Results: Totally, 1,606 patients suspected to stroke with a mean age of 64.89 ± 17.48 years were evaluated, of whom 947 (58.6%) were male. The mean time of arrival of an ambulance in the patient’s location from the EMS station was 11.94 ± 6.67 minutes, and the longest time was 69.32 minutes. The mean time from the patient’s location to the stroke center was 17.79 ± 11.42 minutes (range 2.4 - 83.70 minutes). Stroke centers in Tehran are not distributed in a balanced manner, and they are concentrated on the central and northern parts of Tehran, limiting access to hospital services. Conclusions: The multiplicity of hospitals in the west and center of Tehran led to an increase in access times in eastern Tehran. It emphasizes the necessity of revision of service locating, especially because the east of Tehran has a denser texture than the west.

scholarly journals Normative Values for Londrina ADL Protocol in Healthy Individuals in Age Group of 40–60 Years among Indian Population: A Cross-Sectional Study

2020 ◽  
Vol 2020 ◽  
pp. 1-7
Author(s):  
Uttanoor Sreedevi ◽  
Gopala Krishna Alaparthi ◽  
Shyam krishnan ◽  
Kalyana Chakravarthy Bairapareddy ◽  
R. Anand ◽  
...  
Keyword(s):  
Indian Population ◽  
Cross Sectional Study ◽  
Normative Values ◽  
Age Group ◽  
Healthy Individuals ◽  
Sectional Study ◽  
Cross Sectional ◽  
Reference Equation ◽  
The Mean ◽  
Mean Time

Background. Due to increase in the life expectancy and changes related to aging, it is important to assess ADL (activities of daily living) in older adults. However, there is no standardized protocol available to assess ADLs. Considering the limitations of the available tools, a new protocol named Londrina ADL protocol was developed for which normative values are unavailable in different ethnic groups. Objective. To develop the normative value and reference equation for the Londrina ADL protocol on the basis of anthropometric and demographic variables in healthy individuals in the age group of 40–60 years among the Indian population. Methods. This cross-sectional study was conducted with 282 healthy individuals of both the genders between the age group of 40 and 60 and they were divided into 2 groups: 40–49 and 50–60. Each subject was made to perform the Londrina ADL protocol twice with a 30 min interval between the two protocols. The protocol is composed of 5 activities and the best out of the 2 performances were recorded. Results. The mean time taken among 40–49 years by females is 3.50 ± 0.50 min and by males is 3.73 ± 0.43 min. The mean time taken among 50–60 years by females is 4.25 ± 0.20 min and by males is 4.36 ± 0.18 min. The reference equation to predict reference values for the Londrina ADL protocol was as follows: equation (1): Londrina ADL predicted = 1.205 + (0.054 × age (years)) + (0.001 × height (cm)); equation (2): Londrina ADL predicted = 1.374 + (0.054 × age (years)) + (−0.003 × BMI). Conclusion. The reference equation for the time to complete the Londrina ADL protocol was based on age and BMI as independent variables and can be useful for predicting the performance of healthy individuals.

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