Patient Related Outcome Measures最新文献

Background: The provision of intensive care services is advancing globally. However, in resource-limited settings, it is lagging far behind and intensive care unit mortality is still higher due to various reasons. This study aimed to assess determinants of mortality among medical patients admitted to the intensive care unit.

Methods: A five-year facility-based retrospective Cohort Study was conducted. A total of 546 medical patients admitted to the intensive care unit from March 2017 to February 2022 were included. Document review using a structured questionnaire was implemented to collect data. Data entered into Epi Data were analyzed by STATA and summarized using frequency tables and graphs. Binary and multivariate logistic regression analyses were performed to identify determinants of mortality.

Results: The overall mortality was 35.9%. Approximately half of the deaths were attributed to septic shock, congestive heart failure, severe community-acquired pneumonia, and stroke. The most common immediate cause of death was cardio-respiratory arrest. Source of admission, GCS level at admission, duration of ICU stay, treatment with inotropes, septic shock, and retroviral infection status were found to have a statistically significant association with ICU mortality.

Conclusion and recommendations: This study revealed a significantly higher mortality rate among patients admitted to the intensive care unit. Early identification and admission of patients to the intensive care unit are important factors that could decrease mortality. Patient selection is essential since some patients with a high likelihood of mortality might not benefit from intensive care unit admission in an area with high resource limitations.

Introduction: Epilepsy is a chronic non-communicable disease of the brain that affects millions of people worldwide. A significant number of children are affected globally, and most live in developing countries, often with physical and cognitive disabilities. Regardless of these factors, epilepsy is poorly controlled, particularly in the developing countries. Thus, this study aimed to assess the magnitude of treatment outcomes and its predictors among pediatrics patients with epilepsy who were followed-up at the Dessie Comprehensive Specialized Hospital, Northeast Ethiopia.

Methods: Hospital-based cross-sectional study was conducted from 1 June 2022 to 30 August 2022. A total of 200 patients with epilepsy were included in this study. Data were collected through face-to-face interviews, and by reviewing medical records. The collected data were entered into Epi-data version 4.6 and exported to SPSS version 25.0. Descriptive statistics such as frequencies, percentages, means and standard deviations were computed. Binary and multivariate logistic regression analyses were performed. Variables with p < 0.25 in bivariate analysis were entered into multivariable logistic regression. In multivariable analysis, adjusted odd ratio with 95% CI and p-value less than 0.05 were considered statistically significant.

Results: Of 200 pediatric patients with epilepsy, 66 (34.5%) had poor treatment outcomes. In the multivariate analysis, 11-15 years of age (AOR = 4.08; 95% CI = 1.202, 13.848), poor treatment adherence (AOR = 3.21; 95% CI = 1.421, 7.249), history of more seizure frequency before starting treatment (AOR = 4.19; 95% CI = 1.984, 8.834) and history of head injury (AOR = 3.03; 95% CI = 1.502, 6.112) were significantly associated with poor treatment outcomes in pediatric patients with epilepsy.

Conclusion: Significant proportion of pediatric patients with epilepsy had poor treatment outcomes. Therefore, health-care workers should strictly follow patient treatment especially for pediatric epileptic patients' who have poor treatment adherence, more seizure frequency history, head injury history and whose age were 11-15 years old.

Introduction: Delivering Bad News (DBN) presents a highly challenging situation in physician-patient communication. This study aims to gain insight into the various communication strategies employed by physicians when DBN.

Methods: This qualitative study conducted thematic analysis of in-depth interviews. Physicians from two comprehensive hospitals with large patient populations were selected purposively based on their engagement in delivering bad news to patients. Thematic analysis was made.

Results: Thematic analysis of the data revealed several communication strategies physicians use when delivering bad news. These communication strategies include. Jointly Initiated Physician-Patient Communication Strategies: ((i) Discussing with patient family/caregivers, (ii) Collaborating with other physicians and specialists), Patient-Engaged/Led Communication Strategies: ((iii) Investigating with adolescents alone or without the family, (iv) Helping patients predict what the news is, (v) Identifying patients' emotions related to bad news, (vi) Assessing patients' level of understanding, (vii) Minimizing patient anxiety), Physician-Related Communication Strategies: ((viii) Making sure diagnostic results are accurate, (xi) Identifying causes for rejection, (x) deliveringbad news using clear and simple communication).

Conclusion: Delivering bad news to patients can be challenging for physicians. It is important to be clear and accurate, and to prepare patients for the news. Patients may feel more comfortable and open when they are unaccompanied and with their healthcare provider. The study concluded that physicians need to be prepared to deliver bad news in a sensitive and effective manner.

Background: There is increasing number of patients undergoing hemodialysis globally. Patients on hemodialysis experience physical and emotional stress due to the changes brought by chronic kidney disease.

Aim: The study aimed at exploring the lived experiences of patients on hemodialysis treatment in Kiruddu National Referral Hospital.

Methods: The study employed a phenomenological design. Data was collected using audio tape recording of the interview from 9 participants selected through purposive sampling at Kiruddu National Referral Hospital. The thematic aspects of the lived experience were uncovered using Van Manen data analysis which included three approaches: the detailed or line-by-line approach, selective or highlighting approach and holistic approach.

Results: Six themes emerged during the analysis as hemodialysis prolongs survival; hemodialysis is indispensable, family financial support, physical limitations, emotional distress and adaptation.

Conclusion: It was concluded from the findings that the patients undergoing haemodialysis are facing a wide range of problems such as physical and emotional problems during the course of their treatment and think that haemodialysis is the only way of survival, and these problems need to be addressed. Understanding gained in this study can help nurses to utilize this information in improving the quality of nursing care and guide patients to provide positive reinforcement for their future living.

Background: Children with sickle cell disease (SCD) experience a multiplex of disease-related symptoms and complications, including vaso-occlusive crises (VOCs), episodes characterized by extreme pain.

Methods: A cross-sectional observational survey examined the health-related quality of life (HRQoL) and school experiences of children with SCD 2 months-11 years, burden experienced by their caregivers, and associations between these outcomes and VOC frequency. Caregivers (N=167) of children with SCD in the US completed the Infant-Toddler Quality of Life-Short Form 47 (ITQoL-SF47) for children 2 months-4 years, the Child Health Questionnaire-Parent Form 50 (CHQ-PF50) and PROMIS Pain Interference and Sleep Disturbance Parent Proxy short forms for children 5-11 years, and a study-specific survey of school experiences.

Results: Children with SCD 2 months-4 years had lower ITQoL-SF47 scores (ie, worse HRQoL, p<0.001) than a normative sample of children; across domains, differences ranged from 18.73-45.03 points and exceeded minimal important difference (MID) thresholds. Except for the behavior domain, children with SCD 5-11 years had lower scores on all CHQ-PF50 domains than the normative sample (p<0.001); differences ranged from 6.78-36.37 points and exceeded MID thresholds. Children with more frequent VOCs had lower HRQoL and worse school experiences than children with less frequent VOCs (p<0.05, except for behavior domains). The largest differences based on VOC frequency were observed for overall health and bodily pain/discomfort among children 2 months-4 years (differences=40.88 and 32.50 points, respectively), and bodily pain and role/social limitations due to physical health among children 5-11 years (differences=38.99 and 37.80, respectively). Caregivers of children with more frequent VOCs experienced greater burden than caregivers of children with less frequent VOCs, though specific areas of impact (eg, caregiver emotions, time) differed across child age groups.

Conclusion: VOC frequency is negatively associated with HRQoL, highlighting the burden experienced by children with SCD and their caregivers.

Purpose: To explore, from the perspective of Study Partners (SPs; eg, caregivers) of clinical trial participants with autism spectrum disorder (ASD), any changes experienced in socialization and communication over the clinical trial, how these changes manifested, and the impact these changes had on the autistic individual, the SP, and family. This helps interpret whether changes in trial outcomes were meaningful.

Patients and methods: Interviews were conducted with the SPs of individuals with ASD, without intellectual disability, from 2 clinical trials: 86 children (aged 5-12 years) or adolescents (aged 13-17 years) who took part in the aV1ation trial (83.7% male), and 41 adults (aged 18+ years) who took part in the V1aduct trial (80.5% male). The primary endpoint for both trials was change from baseline in the Vineland^TM-II two-domain composite, consisting of the mean of the Socialization and Communication domains. In these interviews the participants verbally indicated level of change for each of these key domains on 7-point change scales.

Results: Improvements in the Socialization domain enabled greater awareness of the feelings of others and allowed for stronger empathy and kindness. Improvements in the Communication domain allowed for the autistic individual to be better at listening and better at self-expression. Together, changes in these two domains, which were considered most important, allowed for richer, deeper relationships. Study Partners noted that improvements in these domains allowed for better integration within the family unit, decreased stress, and increased optimism about the autistic individual's future.

Conclusions: The impacts of changes in either domain were synergistic, combining together to create positive experiences which in turn led to further positive impacts in other skills. These qualitative insights provide context to the changes that were observed during the clinical trial and captured using the Vineland^TM-II, illustrating the meaning of these changes to the individuals with ASD without intellectual disability and their families, and the impact that they have on people's everyday lives and overall health-related quality of life.

Purpose: The Vineland^TM Adaptive Behavior Scale is often used in autism spectrum disorder (ASD) trials. The Adaptive Behavior Composite Score (VABS-ABC) is the standardized overall score (the average of the Socialization, Communication and Daily Living skills domains), and the standardized 2-Domain Composite Score (VABS-2DC) is a novel outcome measure (average of the Socialization and Communication domains). A within-person meaningful change threshold (MCT) has not been established for the VABS-2DC. This paper presents a quantitative and qualitative interpretation of what constitutes a meaningful change in these scores to individuals with ASD without Intellectual Disability (ID; IQ≥70) and their families, as reported by their study partners (SPs).

Participants and methods: Data were obtained from the aV1ation clinical trial in children and adolescents with ASD and associated exit interviews. The intent-to-treat (ITT) clinical trial population included 308 individuals with autism (85.4% male; average age: 12.4 years [standard deviation (SD)=2.97]); 124 in the child cohort (aged 5 to 12 years; average age: 9.4 years [SD=1.86]), and 184 in the adolescent cohort (aged 13 to 17 years; average age: 14.5 years [SD=1.39]). Study partners of 86 trial participants were included in the Exit Interview Population (EIP): participants represented were 83.7% male, average age: 12.3 years [SD=2.98]). Anchor and distribution-based methods were used to estimate within-person change to support a responder definition, to aid interpretation of the clinical trial data; qualitative data were used to contextualize the meaning of changes observed.

Results: A within-person MCT range of 4 to 8 points was proposed for both VABS-ABC and VABS-2DC, which was associated with at least a 1-point improvement on 4 different anchors. Evidence for this within-person MCT was further supported by qualitative data, which suggested any change was considered meaningful to the individual with ASD, as reported by their SP, no matter what the magnitude.

Conclusion: A change in standardized score of 4 to 8 points constitutes a within-person MCT on both VABS-ABC and novel VABS-2DC in those with ASD and no ID. A change of this, or more, was reported by the SPs in this trial to be meaningful and highly impactful upon the individuals with ASD and their family.