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 ◽  
...  

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.

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Mercedes Guilabert ◽  
Alba Martínez-García ◽  
Marina Sala-González ◽  
Olga Solas ◽  
José Joaquín Mira

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.


Author(s):  
Ronny Zenker ◽  
Maria Girbig ◽  
Janice Hegewald ◽  
Irina Gilewitsch ◽  
Mandy Wagner ◽  
...  

Occupational therapists (OTs) are exposed to physical factors at work, which can lead to an increased risk of musculoskeletal disorders. Most studies examining musculoskeletal complaints in OT report that the neck, shoulders, and lower back are most often afflicted. The aim of the present study was to examine the impact of work as an OT (focusing on specific work tasks) on specific musculoskeletal complaints compared to the general working population. A cross-sectional study involving a self-administered standardized questionnaire was conducted from January until October 2015 in Germany. In OT and the comparison group, the highest 12-month prevalence of musculoskeletal disorders were observed for the lower back, the neck, and the shoulders. In contrast, elevated prevalence ratios (PR) were found for OT in the thumbs (PR = 2.7; 95% CI = 1.9–3.8), the wrists (PR = 1.4; 95% CI = 1.1–1.8), and the elbows (PR = 1.5; 95% CI = 1.0–2.2). OTs were particularly exposed to high exertion hand activity and several stressful postures at work. In conclusion, OTs seem to be at risk of developing work-related musculoskeletal complaints in the thumbs, wrists, and elbows. Preventive measures should help to reduce the exposures caused by highly repetitive and forceful hand activities.


2021 ◽  
Author(s):  
Mercedes Guilabert Mora ◽  
Alba Martínez-García ◽  
Marina Sala-González ◽  
Olga Solas ◽  
José Joaquín Mira

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.


Author(s):  
D. A. Hassan ◽  
M. I. Elamin ◽  
M. Elamin ◽  
H. M. Beheiry ◽  
A. A. Abdalla ◽  
...  

Aims: To investigate the effect of elevated resting heart rate (RHR), hypertension (HTN) and associated risk factors on the prevalence of stroke among Sudanese adults.  Study Design: This is a cross-sectional study based on a survey conducted by Sudanese society of hypertension during the May Month of Measurement (MMM), 2018 campaign. Methods: A total of 12281 respondents (mean age: 32.5±14.5 years, 49% men) were included. Structured questionnaires of demographic data, and self-reported medical history were filled by all respondents and analyzed.  Blood pressure and RHR were measured using an Omron BP monitor. Participants were divided into two main cohorts: normotensive (n=9497, 77.3%) and hypertensive (n=2784, 22.7%) participants. Each cohort was then segregated into three sub-cohorts using RHR tertiles (T1: <79 bpm; T2: RHR: 79 to 100 bpm; and T3:>100 bpm). Results: Multivariate logistic regression analyses were performed to assess the individual and combined effect of RHR and HTN on prevalence of stroke. Hypertensive patients were more likely to develop stroke compared to normotensive participants (OR= 2. 968, 95% CI 2.028-4.345). Within the hypertensive cohort, RHR T3 participants had a significantly increased risk of stroke compared to RHR T1-T2 combined (OR= 2.35, 95% CI1.043-5.323). Individuals of RHR T3 sub-cohort were more likely to be younger, leaner and displayed significantly higher level of both systolic & diastolic blood pressure compared to RHR T1 and T2 groups. Diabetes Mellitus and smoking increased the odds of stroke among both normotensives (OR (95% CI):5.6 (2.24- 14.09), 3.17 (1.71-6.08 respectively), and hypertensives (OR (95% CI): 4.40 (2.26-8.58), 2.03 (0.95-4.32) respectively). Female gender and older age also increases the odds of stroke among hypertensives (OR (95% CI): 1.85 (1.00- 3.45) and 2.00 (1.02- 4.17) respectively.   In conclusion, this study demonstrated that HTN was an independent risk factor of stroke. The effect of elevated RHR on stroke was only prominent when joined to high blood pressure. Prevalence of tachycardia was higher among the young participants which make them more prone to stroke if the condition is associated with HTN. Our results highlight the importance of addressing elevated RHR to reduce the risk of stroke particularly among hypertensive patients.  


2019 ◽  
Author(s):  
Canaan Negash Seifu ◽  
Paul Patrick Fahey ◽  
Tewodros Getachew Hailemariam ◽  
Evan Atlantis

Abstract Background: Unintended pregnancy rates are substantially higher in developing regions, have significant health consequences, and disproportionately affect subgroups with socio-economic disadvantage. We aimed to examine if husband’s education is associated with their wife’s unintended pregnancy in southern Ethiopia. Methods: The data source for this study was from a cross-sectional study on iron-folate supplementation and compliance in Wolaita, South Ethiopia. Data were collected from 627 married pregnant women regarding their husband’s educational status, socio-demographic characteristics and if they wanted to become pregnant at the time of survey using an interviewer administered questionnaire. Odds Ratios (ORs) with associated z-tests and 95% confidence intervals and logistic regression analyses were used to identify variables associated with unintended pregnancy. Results: The proportion of unintended pregnancy was 20.6% in this study with husband’s educational status, age, residence, and using family planning methods predictive of unintended pregnancy (all P-values <0.05). In the multivariable regression analysis, the odds of having unintended pregnancy was 60% lower (adjusted OR (95%CI; 0.4(0.18, 0.9)) when husband’s had University or College education compared to no education was after controlling for the age of women (adjusted OR per year older (95%CI); 1.13(1.09, 1.19)) and rural or urban residence (adjusted OR for rural (95%CI); 1.75(0.98, 3.12)) Conclusion: Unintended pregnancies were highest for women with less educated husbands in southern Ethiopia. We also found that being older and living in rural area were independently associated with an increased risk of unintended pregnancy. Strategies for addressing the family planning needs of families where husbands have less education should be the subject of future research.


PLoS ONE ◽  
2021 ◽  
Vol 16 (6) ◽  
pp. e0252351
Author(s):  
Francisco Purroy ◽  
Gloria Arqué

Background COVID-19 may predispose to both venous and arterial thromboembolism event (TEE). Reports on the prevalence and prognosis of thrombotic complications are still emerging. Objective To describe the rate of TEE complications and its influence in the prognosis of hospitalized patients with COVID-19 after a cross-sectional study. Methods We evaluated the prevalence of TEE and its relationship with in-hospital death among hospitalized patients with COVID-19 who were admitted between 1st March to 20th April 2020 in a multicentric network of sixteen Hospitals in Spain. TEE was defined by the occurrence of venous thromboembolism (VTE), acute ischemic stroke (AIS), systemic arterial embolism or myocardial infarction (MI). Results We studied 1737 patients with proven COVID-19 infection of whom 276 died (15.9%). TEE were presented in 64 (3.7%) patients: 49 (76.6%) patients had a VTE, 8 (12.5%) patients had MI, 6 (9.4%%) patients had AIS, and one (1.5%) patient a thrombosis of portal vein. TEE patients exhibited a diffuse profile: older, high levels of D-dimer protein and a tendency of lower levels of prothrombin. The multivariate regression models, confirmed the association between in-hospital death and age (odds ratio [OR] 1.12 [95% CI 1.10–1.14], p<0.001), diabetes (OR 1.49 [95% CI 1.04–2.13], p = 0.029), chronic obstructive pulmonary disease (OR 1.61 [95% CI 1.03–2.53], p = 0.039), ICU care (OR 9.39 [95% CI 5.69–15.51], p<0.001), and TTE (OR 2.24 [95% CI 1.17–4.29], p = 0.015). Conclusions Special attention is needed among hospitalized COVID-19 patients with TTE and other comorbidities as they have an increased risk of in-hospital death.


2020 ◽  
Author(s):  
Mercedes Guilabert Mora ◽  
Alba Martínez-García ◽  
Marina Sala-González ◽  
Olga Solas ◽  
José Joaquín Mira

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.


Pain Medicine ◽  
2019 ◽  
Vol 20 (10) ◽  
pp. 2043-2050
Author(s):  
Selen Gur-Ozmen ◽  
Ruhan Karahan-Ozcan

AbstractObjectiveStudies have shown a relationship between insulin resistance (IR) and migraine that is more evident in some migraineurs. Long-term use of various drugs and increased risk of diverse side effects is an unavoidable reality in this population of patients. Thus, in this study, we aimed to investigate factors associated with IR in migraine and the impact of chronic usage of various drugs, which might play a part in development of IR.DesignCross-sectional study.SettingGebze Fatih General Hospital, Kocaeli, Turkey.SubjectsMigraine patients (N = 150) were investigated.MethodsWeight, height, waist circumference, and blood pressure were measured. Fasting glucose, fasting insulin, glycated hemoglobin, and lipid profile were also measured. IR was selected as a dependent variable. The independent variables included age, cigarette smoking, alcohol consumption, family history of migraine, diabetes mellitus and hypertension, characteristics of pain, migraine triggers and subgroups, medication used during attack treatment, medication used as prophylactic treatment, and oral contraceptive treatment. Descriptive analysis and multivariate logistic regression were performed.ResultsCentral obesity (odds ratio [OR] = 7.131, 95% confidence interval [CI] = 2.451–20.741, P < 0.0001), metoclopramide treatment during an attack (OR = 3.645, 95% CI = 0.996–13.346, P = 0.041), family history of DM (OR = 3.109, 95% CI = 1.189–8.132, P = 0.035), nonsteroidal anti-inflammatory drug (NSAID) usage during an attack (OR = 2.578, 95% CI = 1.053–6.311, P = 0.043), and negative family history of hypertension (OR = 0.226, 95% CI = 0.085–0.602, P = 0.002) were significant factors for exhibiting IR in migraine.ConclusionsOur study demonstrates an association between metoclopramide and NSAID treatments and IR in migraine.


2021 ◽  
Vol 3 (1) ◽  
Author(s):  
Daniel Richter ◽  
Simon Faissner ◽  
Dirk Bartig ◽  
Lars Tönges ◽  
Kerstin Hellwig ◽  
...  

Abstract Background Since the coronavirus disease 2019 (COVID-19) has risen, several risk factors have been identified, predicting a worse outcome. It has been speculated that patients with Multiple sclerosis (MS) have an increased risk for a severe course of COVID-19 due to a suspected higher vulnerability. Therefore, we aimed to analyze the impact of comorbid MS on the outcome of patients with COVID-19 in Germany. Methods We conducted a retrospective cross-sectional study using the administrative database of all hospitalized patients diagnosed with PCR-confirmed COVID-19 (n = 157,524) in Germany during 2020. The cohort was stratified according to the presence (n = 551) or absence (n = 156,973) of comorbid MS, including discrimination of MS subtypes. Primary outcome measures were admission to the intensive care unit (ICU), use of invasive or non-invasive ventilation, and in-hospital mortality. Differences were investigated using rates and odds ratios as estimates. Pooled overall estimates, sex-stratified estimates, age-group stratified estimates, and MS subtype stratified estimates were calculated for all outcomes under the random-effects model. Results Among 157,524 patients hospitalized with COVID-19, 551 had a concurrent MS diagnosis (0.3%). Overall, univariate analysis showed lower rates of ICU admission (17.1% versus 22.7%, p < 0.001), lower use of ventilation (9.8% versus 14.5%, p < 0.001) and lower in-hospital mortality (11.1% versus 19.3%, p < 0.001) among COVID-19 patients with comorbid MS. This finding was stable across the subgroup analysis of sex and MS subtype but was attenuated by age-stratification, confirming equal odds of in-hospital mortality between COVID-19 patients with and without MS (log OR: 0.09 [95% CI: − 0.40, 0.59]). Conclusions Although there might be differences in risk within the MS patients’ population, this large-scale nationwide analysis found no evidence for a worse outcome of COVID-19 in patients with comorbid MS compared to non-MS individuals.


2018 ◽  
Vol 31 (3) ◽  
Author(s):  
Jolanta Majer ◽  
Sandra Pyda ◽  
Jerzy Robert Ladny ◽  
Antonio Rodriguez-Nunez ◽  
Lukasz Szarpak

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