scholarly journals Severe Asthma Management, Patient Pathway, and Disease Burden in Russia: Country Results From Multi-Country Retrospective Cross-Sectional Study

2021 ◽  
Author(s):  
Zaurbek Aisanov ◽  
Oksana Kurbacheva ◽  
Alexander Emelyanov ◽  
Galina Ignatova ◽  
Lindsey Teichman ◽  
...  
Keyword(s):  
Phase I ◽  
Severe Asthma ◽  
Phase Ii ◽  
Healthcare Resource ◽  
Asthma Management ◽  
Cross Sectional Study ◽  
Blood Eosinophil ◽  
Sectional Study ◽  
Cross Sectional ◽  
Patient Reported

Abstract Background Severe asthma is a poorly controlled disease in Russia which leads to significant healthcare resource use and costs. However, little is known about its burden and management in a real clinical practice in Russia. Here we report the results obtained in the Russian population during an international cross-sectional study. Methods The study comprised two phases: in Phase I data were collected retrospectively from medical records, while Phase II was a cross-sectional collection of patient-reported outcomes and up-to-date data. For Phase I, adult patients with severe asthma according to ERS/ATS criteria were enrolled. Phase I patients were enrolled into Phase II if they signed a written consent form. Data on demographics, history of asthma and comorbidities, treatment approach, and healthcare resource utilization were obtained in both phases. In Phase II, asthma control and health-related quality of life (HRQoL) were also evaluated. Results A total of 315 patients were included in Phase I of the study, 106 (33.6%) of them entered Phase II of the study. The study population included more female (n=211, 67.0%) than male patients (n=104, 33.0%). Majority of subjects were either obese (n=103, 39.8%) or overweight (n=94, 36.3%). The most common comorbidity was cardiovascular disease (n=217, 71.4%), followed by chronic respiratory disease (n=198, 68.8%), including COPD and allergies. Mean (SD) age at diagnosis of asthma and severe asthma were 42.9 (16.0) and 53.1 (13.2) years, respectively. There were 268 (85.1%) patients who had at least one exacerbation during last 12 months. Most subjects had only one blood eosinophil count in the last 12 months (n=143, 81.3%). Mean (SD) FEV1 was 56.9 (20.4) % predicted. The mean (SD) last serum IgE/(RAST) value was 254.3 (249.7) ng/mL. Asthma management was generally in line with guidelines. Most patients had poorly controlled asthma according to the ACT and impaired HRQoL. Conclusions In Russia, severe asthma patients had poor disease control, high hospital admission rates and multiple comorbidities. Eosinophil and IgE level measurements are not considered routine tests which might be a barrier for appropriate phenotyping and treatment selection, including prescription of biologics in course of disease management.

scholarly journals Full, partial and modified permutations of the Mayo Score: Characterizing clinical and patient-reported outcomes in ulcerative colitis patients

2021 ◽  
Author(s):  
April N Naegeli ◽  
Theresa Hunter ◽  
Yan Dong ◽  
Ben Hoskin ◽  
Chloe Middleton-Dalby ◽  
...  
Keyword(s):  
Ulcerative Colitis ◽  
Patient Reported Outcomes ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Cross Sectional ◽  
Assessment Scores ◽  
Mayo Score ◽  
Patient Reported ◽  
Practice Trials ◽  
Highly Correlated

Abstract Background Understanding ulcerative colitis (UC) disease activity assessed via the full, modified or partial Mayo Score may help clinicians apply results from clinical trials to practice and facilitate interpretation of recent and older studies. Methods Mayo Score variables were assessed in a cross-sectional study of 2608 UC patients. Results Permutations of Mayo Scores were highly correlated, and models predicting the omitted variable from each permutation demonstrated significant agreement between predicted and observed values. Conclusions Partial/modified Mayo Scores may be used to predict endoscopic and Physician's Global Assessment scores, and serve as proxies for the full Mayo Score in clinical practice/trials.

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 PROMIS Scales for Assessment of Persistent Post-COVID Symptoms: A Cross Sectional Study

2021 ◽  
Vol 12 ◽  
pp. 215013272110304
Author(s):  
Ravindra Ganesh ◽  
Aditya K. Ghosh ◽  
Mark A. Nyman ◽  
Ivana T. Croghan ◽  
Stephanie L. Grach ◽  
...  
Keyword(s):  
Health Status ◽  
Social Roles ◽  
Disease Process ◽  
Cross Sectional Study ◽  
Large Sample Size ◽  
Sectional Study ◽  
Cross Sectional ◽  
Data Set ◽  
Patient Reported ◽  
The Impact

Objective Persistent post-COVID symptoms are estimated to occur in up to 10% of patients who have had COVID-19. These lingering symptoms may persist for weeks to months after resolution of the acute illness. This study aimed to add insight into our understanding of certain post-acute conditions and clinical findings. The primary purpose was to determine the persistent post COVID impairments prevalence and characteristics by collecting post COVID illness data utilizing Patient-Reported Outcomes Measurement Information System (PROMIS®). The resulting measures were used to assess surveyed patients physical, mental, and social health status. Methods A cross-sectional study and 6-months Mayo Clinic COVID recovered registry data were used to evaluate continuing symptoms severity among the 817 positive tested patients surveyed between March and September 2020. The resulting PROMIS® data set was used to analyze patients post 30 days health status. The e-mailed questionnaires focused on fatigue, sleep, ability to participate in social roles, physical function, and pain. Results The large sample size (n = 817) represented post hospitalized and other managed outpatients. Persistent post COVID impairments prevalence and characteristics were determined to be demographically young (44 years), white (87%), and female (61%). Dysfunction as measured by the PROMIS® scales in patients recovered from acute COVID-19 was reported as significant in the following domains: ability to participate in social roles (43.2%), pain (17.8%), and fatigue (16.2%). Conclusion Patient response on the PROMIS® scales was similar to that seen in multiple other studies which used patient reported symptoms. As a result of this experience, we recommend utilizing standardized scales such as the PROMIS® to obtain comparable data across the patients’ clinical course and define the disease trajectory. This would further allow for effective comparison of data across studies to better define the disease process, risk factors, and assess the impact of future treatments.

scholarly journals Family involvement and patient-experienced improvement and satisfaction with care: a nationwide cross-sectional study in Danish psychiatric hospitals

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Marie Louise Svendsen ◽  
Trine Ellegaard ◽  
Karoline Agerbo Jeppesen ◽  
Erik Riiskjær ◽  
Berit Kjærside Nielsen
Keyword(s):  
Psychiatric Hospital ◽  
Hospital Care ◽  
Psychiatric Hospitals ◽  
Cross Sectional Study ◽  
Satisfaction With Care ◽  
Sectional Study ◽  
Cross Sectional ◽  
Caregiver Relationship ◽  
Patient Reported ◽  
Caregiver Involvement

Abstract Background Randomised controlled trials suggest that family therapy has a positive effect on the course of depression, schizophrenia and anorexia nervosa. However, it is largely unknown whether a positive link also exists between caregiver involvement and patient outcome in everyday psychiatric hospital care, using information reported directly from patients, i.e. patient-reported experience measures (PREM), and their caregivers. The objective of this study is to examine whether caregiver-reported involvement is associated with PREM regarding patient improvement and overall satisfaction with care. Methods Using data from the National Survey of Psychiatric Patient Experiences 2018, we conducted a nationwide cross-sectional study in Danish psychiatric hospitals including patients and their caregivers who had been in contact with the hospital (n = 940 patients, n = 1008 caregivers). A unique patient identifier on the two distinct questionnaires for the patient and their caregiver enabled unambiguous linkage of data. In relation to PREM, five aspects of caregiver involvement were analysed using logistic regression with adjustment for patient age, sex and diagnosis. Results We consistently find that high caregiver-reported involvement is statistically significantly associated with high patient-reported improvement and overall satisfaction with care with odds ratios (OR) ranging from 1.69 (95% confidence interval (CI) 0.95–2.99) to 4.09 (95% CI 2.48–6.76). This applies to the following aspects of caregiver-reported involvement: support for the patient-caregiver relationship, caregiver information, consideration for caregiver experiences and the involvement of caregivers in decision making. No statistically significant association is observed regarding whether caregivers talk to the staff about their expectations for the hospital contact. Conclusion This nationwide study implies that caregiver involvement focusing on the patient-caregiver relationship is positively associated with patient improvement and overall satisfaction with care in everyday psychiatric hospital care.

scholarly journals Asthma control and management among schoolchildren in urban Uganda: results from a cross-sectional study

2019 ◽  
Vol 4 ◽  
pp. 168 ◽  
Author(s):  
Harriet Mpairwe ◽  
Pius Tumwesige ◽  
Milly Namutebi ◽  
Marble Nnaluwooza ◽  
Tonny Katongole ◽  
...  
Keyword(s):  
Asthma Control ◽  
Asthma Management ◽  
Cross Sectional Study ◽  
P Value ◽  
Asthma Diagnosis ◽  
Sectional Study ◽  
Asthma Control Test ◽  
Cross Sectional ◽  
Children With Asthma ◽  
Control And Management

Background: Children from low- and middle-income countries have poor asthma control, mainly because of poor management. The extent of this problem in Uganda is not well known, but such information would be useful to guide policy and practice. We therefore conducted a cross-sectional study among schoolchildren with asthma in urban Uganda, to assess the level of asthma control and management. Methods: Schoolchildren aged 5-17 years were enrolled, asthma was diagnosed by the study medical team. Asthma control was assessed using the Asthma Control Test and the childhood Asthma Control Test. Data on previous asthma management was obtained using interviewer-led questionnaires. Data were analysed using multiple linear and multiple logistic regression. Results: We enrolled 561 children with asthma, of whom only 56% had ever had an asthma diagnosis. We categorised asthma as well-controlled (55.5%), partly-controlled (29.5%) and poorly-controlled (15.0%). Poor asthma control was associated with increasing age (adjusted regression coefficient [95% confidence interval], p-value: -1.07 [-1.20, -0.94], p<0.0001), concurrent allergic rhinitis (-1.33 [-2.28, -0.38], p=0.006), and city residence in early life (-1.99 [-3.69, -0.29], p=0.06). Regular use of inhaled asthma medication in the last 12 months was very low; 18.1% for salbutamol and 6.7% for inhaled corticosteroids. The main barriers to inhaled asthma medication use were lack of prescription (47.6%) and inaccurate diagnosis (38.8%). Increased inhaler use was associated with tertiary education of the fathers (adjusted odds ratio [95% confidence interval], p-value: 5.19 [2.39-11.28], p<0.0001), city residence in early life (4.66 [1.79-12.43], 0.002) and an asthma diagnosis prior to enrolment (11.39 [6.35-20.43], p<0.0001). Conclusions: This study confirms that children with asthma in Uganda generally have inadequate asthma control, which is attributable to poor asthma management. This could be improved through re-training of medical workers and patient education, and by increasing availability and affordability of essential asthma medications.

The needs and well‐being of severe asthma and COPD carers: A cross‐sectional study

Respirology ◽  
2021 ◽  
Author(s):  
Eleanor C. Majellano ◽  
Vanessa L. Clark ◽  
Peter G. Gibson ◽  
Juliet M. Foster ◽  
Vanessa M. McDonald
Keyword(s):  
Severe Asthma ◽  
Well Being ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Cross Sectional

scholarly journals Gastrointestinal Symptoms of and Psychosocial Changes in Inflammatory Bowel Disease: A Nursing-Led Cross-Sectional Study of Patients in Clinical Remission

Medicina ◽  
2020 ◽  
Vol 56 (1) ◽  
pp. 45 ◽  
Author(s):  
Rosellina Margherita Mancina ◽  
Raffaele Pagnotta ◽  
Caterina Pagliuso ◽  
Vincenzo Albi ◽  
Daniela Bruno ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Patient Reported Outcomes ◽  
Gastrointestinal Symptoms ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Cross Sectional ◽  
Patient Reported ◽  
Inflammatory Bowel ◽  
The Impact

Background and Objectives: Nursing management in Inflammatory Bowel Disease (IBD) is focused on global patient care. Starting from basic knowledge of diagnostic and therapeutic management, nurses can assess the impact of IBD on patients’ quality of life not only at the physical level, but also at the psychological, social, and emotional levels. The aim of this study was to evaluate the impact of gastrointestinal symptoms on psychosocial changes in IBD patients in remission through nursing-led Patient-Reported Outcomes. Materials and Methods: We performed a cross-sectional study of 109 IBD patients in clinical and endoscopic remission. Specialist nurses invited patients to complete questionnaires on gastrointestinal symptoms and quality of life through the Patient-Reported Outcomes Measurement Information System (PROMIS). Results: We found that the gastrointestinal symptoms that the patients reported had a significant impact on the analyzed aspects of health. More specifically, belly pain, diarrhea, and bloating were associated with depressive symptoms (p < 0.001), anxiety (p < 0.001), fatigue (p < 0.001), and sleep disturbances (p < 0.001). Moreover, these symptoms also significantly affected patients’ social dimension in terms of satisfaction with participation in social roles (p < 0.001, p < 0.05, and p < 0.001 for belly pain, diarrhea, and bloating, respectively) and physical functions (p < 0.001). The results were virtually the same in a multivariable analysis adjusted by age, gender, body mass index (BMI), and disease duration. Conclusions: Even during remission, gastrointestinal symptoms are the main factors that influence quality of life in IBD patients. This exploratory study highlights the need to adopt validated questionnaires in clinical practice, and demonstrates that PROMIS is a valid, objective, and standardized instrument that can help nursing staff to better define the consequences of the disease in a patient’s daily life.

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