Patient-reported side effects, concerns and adherence to corticosteroid treatment for asthma, and comparison with physician estimates of side-effect prevalence: a UK-wide, cross-sectional study

Objective: Fever alone can lead to rare serious complications in children, such as febrile seizures. The aim of this study is to assess the knowledge, beliefs, and behavior of parents toward fever and its management. Methods: A cross-sectional study using an online questionnaire was applied over a period of 3 months, from January to March 2018, to parents who were living in Saudi Arabia. The inclusion criteria were a parent who is a resident of Saudi Arabia, with at least one child aged 6 years or less, while incomplete questionnaires, having a child aged more than 6 years, or parents who were not living in Saudi Arabia were excluded. Results: A total of 656 parents completed the questionnaire. More than two-thirds of the subjects were female, the majority of whom were aged between 25–33 years old. The best-reported place to measure the temperature of children was the armpit (46%), followed by the ear (28%) and the mouth (10.7%). More than half of the parents considered their children feverish at a temperature of 38 °C. The majority of parents (79.7%) reported that the most serious side effects of fever were seizure, brain damage (39.3%), coma (29.9%), dehydration (29.7%), and death (25%). The most common method used to measure a child’s temperature was an electronic thermometer (62.3%). The most common antipyretic was paracetamol (84.5%). Conclusions: Our study demonstrates the good knowledge of parents in identifying a feverish temperature using the recommended route and tools for measuring body temperature.

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

Crohn's & Colitis 360 ◽

10.1093/crocol/otab007 ◽

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.

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

Orphanet Journal of Rare Diseases ◽

10.1186/s13023-021-01700-z ◽

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.

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SAT0330 NEW IMMUNOMODULATORY COMBINATION THERAPIES IN PATIENTS WITH SYSTEMIC SCLEROSIS: A RETROSPECTIVE CROSS-SECTIONAL STUDY

Annals of the Rheumatic Diseases ◽

10.1136/annrheumdis-2020-eular.1855 ◽

2020 ◽

Vol 79 (Suppl 1) ◽

pp. 1110.1-1111

Author(s):

J. Qiao ◽

S. X. Zhang ◽

T. T. Zhang ◽

J. Zhang ◽

M. T. Qiu ◽

...

Keyword(s):

Systemic Sclerosis ◽

Side Effects ◽

Lymphocyte Subsets ◽

Cross Sectional Study ◽

Peripheral Lymphocyte ◽

High Morbidity ◽

Combination Therapies ◽

Sectional Study ◽

Cross Sectional ◽

Long Term Treatment

Background:Systemic sclerosis (scleroderma, SSc) is a rare complex connective tissue disease associated with high mortality and high morbidity1. Active SSc are typically treated with immunosuppressants, which may create a variety of severe side-effects, especially for long-term treatment2. As the pathogenesis of SSc is still a matter of debate, growing evidences have focused on the immune disorders3. However, the quantitative status of lymphocyte subsets in SSc patients are unclear and effects of immunomodulatory combination therapies (avoiding side-effects of conventional therapy) on the lymphocyte subsets are unknown.Objectives:To investigate the quantitative status of peripheral lymphocyte subpopulations and CD4+T subsets in SSc patients for the exploration of SSc pathogenesis and evaluate the effects of new immunomodulatory combination therapies on those cells.Methods:From July 2014 to December 2019, total 166 patients with SSc and 206 healthy controls (HCs) were enrolled in this study, in which, 79 follow-up patients received immunomodulatory drugs (IMiDs) such as low-dose interleukin-2, rapamycin, metformin, retinoic acid and coenzyme Q10. The absolute numbers of T, B, NK, CD4+T, CD8+T, Th1, Th2, Th17 and Tregs in peripheral blood of these subjects were detected by flow cytometry combined with standard absolute counting beads.Results:Patients with SSc had lower absolute counts of total T, NK, Th2, Th17 and Tregs as compared with those of HCs (P<0.05) (Figure 1). After immunomodulatory combination treatments, there were increases in a various of peripheral lymphocyte subsets such as T, B and CD8+T (P< 0.05). Moreover, the increased level of Tregs was much more dramatical than those of other lymphocyte subsets, resulting in the decrease ratios of Teffs/Tregs such as Th1/Tregs and Th2/Tregs and rebuilding immunologic equilibrium (Figure 2).Conclusion:This cross-sectional study clarified the abnormal status of lymphocyte subsets in SSc patients, suggesting lymphocyte subsets, especially Tregs, might be relevant and play a crucial role in the pathogenesis of SSc, thus providing a potential therapeutic target for SSc patients. Immunomodulatory combination therapies effectively increase the level of Tregs as well as other lymphocytes to some degree and maintain the immunologic equilibrium, which may help for SSc patients’ symptom remission.References:[1]Denton CP, Khanna D. Systemic sclerosis. Lancet 2017;390(10103):1685-99. doi: 10.1016/S0140-6736(17)30933-9 [published Online First: 2017/04/18][2]Winthrop KL, Weinblatt ME, Bathon J, et al. Unmet need in rheumatology: reports from the Targeted Therapies meeting 2019. Ann Rheum Dis 2020;79(1):88-93. doi: 10.1136/annrheumdis-2019-216151 [published Online First: 2019/10/31][3]Skaug B, Khanna D, Swindell WR, et al. Global skin gene expression analysis of early diffuse cutaneous systemic sclerosis shows a prominent innate and adaptive inflammatory profile. Ann Rheum Dis 2019 doi: 10.1136/annrheumdis-2019-215894 [published Online First: 2019/11/27]Acknowledgments :None.Disclosure of Interests:None declared

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

Journal of Primary Care & Community Health ◽

10.1177/21501327211030413 ◽

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.

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Side effects of BNT162b2 mRNA COVID-19 vaccine: A randomized, cross-sectional study with detailed self-reported symptoms from healthcare workers

International Journal of Infectious Diseases ◽

10.1016/j.ijid.2021.04.047 ◽

2021 ◽

Author(s):

Renuka A.K. Kadali ◽

Ravali Janagama ◽

Sharanya Peruru ◽

Srikrishna V. Malayala

Keyword(s):

Side Effects ◽

Healthcare Workers ◽

Cross Sectional Study ◽

Sectional Study ◽

Cross Sectional

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

BMC Psychiatry ◽

10.1186/s12888-021-03179-1 ◽

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.

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Assessment of Females Awareness in Saudi Arabia about Long term use of COCP and Venous Thromboembolism Risk: A Cross Sectional Study

International Journal of Innovative Research in Medical Science ◽

10.23958/ijirms/vol06-i01/1039 ◽

2021 ◽

Vol 6 (01) ◽

pp. 62-66

Author(s):

Basmah Mohammed Alazmi ◽

Shaikha Sulayyem Alsharari ◽

Razan motawkel ◽

Sara Alzahrani ◽

Anhar Alfateel ◽

...

Keyword(s):

Saudi Arabia ◽

Side Effects ◽

Sample Size ◽

Health Care Providers ◽

Cross Sectional Study ◽

University Education ◽

Care Providers ◽

Sectional Study ◽

Cross Sectional ◽

Study Participants

Background: Nowadays there are a lot of women using contraceptive oral combined pills for birth control and as we know VTE is one of the complications when it used for a long time, and here in this study our aim is to assess the awareness and knowledge of females who live in Saudi Arabia about COCP and its complications like VTE. A cross-sectional observational study based on a questionnaire conducted among females who live in Saudi Arabia. Data collection was done by using online survey which contains questions about the age, education and contraception. Methods: An observational cross-sectional study carried out during December 2020 in Saudi Arabia. We minimize our target population through inclusion criteria: 1- Female 2- Live in Saudi Arabia 3- Agree to participate. Sample size was 454 participants calculated by using survey system website through sample size calculator with Confidence Level 95% and margin of error 5%. Result: A total of 454 patients completed the survey questionnaire. The results showed that the vast majority of the study participants aged 20 years or more. Moreover, more than 90% of the study participants were Saudi females. The average body weight is around 95 kg and height 164.2 cm. The results also indicated that two-third of the study participants attained university education level compared to 16.1% obtained secondary education. Additionally, 36.6% of the study participants worked as a housewife, 18.1% working in health field. Moreover, 40% of the respondents reside in the western regions, 34% live in eastern regions compared to the lowest percentage in South region 3.3%. Conclusion: In summary, this study revealed that the internet was the main source of knowledge. Health care providers should perform their intended role in improving the female’s awareness regarding family planning. The criteria for preferable contraceptive method are that it has few or no side effects, also it depends on how much effective and convenient it is. Educational programs may be warranted to minimize the fear of side effects and to enhance the general knowledge about contraception.

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