scholarly journals Quality of life of patients with Hirschsprung disease after Duhamel and Soave pull-through procedures: A mixed-methods sequential explanatory cohort study

2020 ◽  
Vol 56 ◽  
pp. 34-37
Author(s):  
Michelle Raj Saysoo ◽  
Fatwa Sari Tetra Dewi ◽  
Gunadi
Keyword(s):  
Quality Of Life ◽  
Cohort Study ◽  
Mixed Methods ◽  
Hirschsprung Disease ◽  
Sequential Explanatory ◽  
Pull Through

scholarly journals Assessing Wellbeing in People Living with Dementia Using Reminiscence Music with a Mobile App (Memory Tracks): A Mixed Methods Cohort Study

2019 ◽  
Vol 2019 ◽  
pp. 1-10
Author(s):  
Stuart Cunningham ◽  
Mark Brill ◽  
J. Harry Whalley ◽  
Rebecca Read ◽  
Gordon Anderson ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cohort Study ◽  
Mixed Methods ◽  
Care Home ◽  
Daily Basis ◽  
Mobile App ◽  
Care Providers ◽  
The Uk ◽  
The Impact

The number of people living with dementia is growing, leading to increasing pressure upon care providers. The mechanisms to reduce symptoms of dementia can take many forms and have the aim of improving the wellbeing and quality of life of the person living with dementia and those who care for them. Besides the person who has dementia, the condition has a profound impact upon their loved ones and carers. One therapeutic approach is the use of music, an area recognised as having potential benefit, but requiring further research. The present paper reports upon a mixed methods cohort study that examines the use of a musical mobile app as a way to promote song-task association in people living with dementia. The study took place in care home environments in the UK. A total of fourteen participants (N = 14) were recruited. Quantitative measurements were taken on a daily basis prior to, and during, use of the mobile app over several weeks. Metrics came from the complete Self-Assessment Manikin scale (arousal, valence, and dominance), and a subset of three from the Quality of Life in Alzheimer’s Disease questionnaire (physical health, memory, and life as a whole). Subsequently, semistructured interviews were conducted with staff at the care home to assess the impact of the app upon their role and the residents they care for. No significant differences were found in the combined quantitative measures for the ten (n = 10) sets of responses sufficient to be analysed. However, the qualitative results suggest that use of the mobile app produced positive changes in terms of behaviour, ability, and routine in the life of residents living with dementia. These findings contribute to the growing body of evidence-based research in the field of musical therapies for reducing symptoms of dementia and highlight elements where further study is warranted.

Abstract P085: Racism, Resilience, And Quality Of Life In Black Stroke Survivors: A Mixed-methods Cohort Study Protocol

Circulation ◽  
2021 ◽  
Vol 143 (Suppl_1) ◽  
Author(s):  
Mary F Love ◽  
Andrea N Brooks ◽  
Sonya Cox ◽  
Anjail Z Sharrief
Keyword(s):  
Quality Of Life ◽  
Cohort Study ◽  
Mixed Methods ◽  
Data Collection ◽  
Sample Size ◽  
Qualitative Data ◽  
Black Americans ◽  
Stroke Survivors ◽  
Poor Hrqol

Introduction: Annual age-adjusted incidence and death rates for stroke are significantly higher among Black Americans than among White Americans. Racism, which operates at structural, cultural and interpersonal levels, exerts significant stress on Black Americans and contributes to health disparities, including those related to stroke. Health-related quality of life (HRQoL) encompasses an individual’s self-perception of physical, mental, and social health. The combined effects of racism, stroke-related stress, and psychosocial stressors can result in negative outcomes, including poor HRQoL for Black stroke survivors. Resilience refers to maintaining relatively stable, healthy psychological and physical functioning in the aftermath of a stressful event like stroke. The purpose of this study will be to examine the effects of racism, resilience, and key psychosocial variables on Black stroke-survivor HRQoL. Hypothesis: We hypothesize racism and lower resilience will be associated with lower HRQoL. Methods: We will conduct a mixed-methods cohort study to examine the effects of racism and resilience on HRQoL of Black stroke survivors recruited from a stroke clinic in a large metropolitan area in the southeast US. Adult community-dwelling stroke survivors who self-identify as Black or African American and who have experienced a stroke event in the past 1 to 2 months will be eligible for study inclusion. Baseline quantitative data collection will occur at the initial clinic visit, with follow-up data collection at 5 to 6 months’ post-stroke. The exposure variables will be racism and resilience, and the outcome variable will be physical, mental, and social HRQoL. Qualitative data will be collected via focus groups. The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) guidelines will be followed to report study results. Results: Power calculations for a two-tailed linear regression analysis with α ≤ .05, β .80, and an effect size of .15 (medium) resulted in a required sample size of 68. Our targeted sample size of 82 participants (41 males and 41 females) accounts for an attrition rate of 20%. The statistical approach to test the direct effects of each exposure variable on HRQoL will be multiple-level models. An interaction term for resilience will be included in the racism model. Qualitative data will be audio recorded, transcribed, and analyzed for themes regarding racism and resilience. Conclusions: Studies of the effects of racism on outcomes for Black stroke survivors are largely absent. This study will provide a first step toward identifying Black stroke survivors at risk for poor HRQoL in early stroke recovery.

Bowel Function and Quality of Life After Transanal Endorectal Pull-through for Hirschsprung Disease

2017 ◽  
Vol 265 (3) ◽  
pp. 622-629 ◽  
Author(s):  
Malla I. Neuvonen ◽  
Kristiina Kyrklund ◽  
Risto J. Rintala ◽  
Mikko P. Pakarinen
Keyword(s):  
Quality Of Life ◽  
Hirschsprung Disease ◽  
Bowel Function ◽  
Pull Through

scholarly journals Characteristics and health status of patients with and without confirmed HFpEF

2020 ◽  
Vol 41 (Supplement_2) ◽  
Author(s):  
C Deaton ◽  
F Forsyth ◽  
J Mant ◽  
D Edwards ◽  
R Hobbs ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Primary Care ◽  
Cohort Study ◽  
Health Status ◽  
Functional Impairment ◽  
Funding Source ◽  
Walk Distance ◽  
Minute Walk Distance ◽  
Minute Walk

Abstract Aims Patients with heart failure with preserved ejection fraction (HFpEF) are usually older and multi-morbid and diagnosis can be challenging. The aims of this cohort study were to confirm diagnosis of HFpEF in patients with possible HFpEF recruited from primary care, to compare characteristics and health status between those with and without HFpEF, and to determine factors associated with health status in patients with HFpEF. Methods Patients with presumed HFpEF were recruited from primary care practices and underwent clinical assessment and diagnostic evaluation as part of a longitudinal cohort study. Health status was measured by Montreal Cognitive Assessment (MOCA), 6-minute walk test, symptoms, and the Kansas City Cardiomyopathy Questionnaire (KCCQ), and quality of life (QoL) by EQ-5D-5L visual analogue scale (VAS). Results 151 patients (mean age 78.5±8.6 years, 40% women, mean EF 56% + 9.4) were recruited and 93 (61.6%) were confirmed HFpEF (those without HFpEF had other HF and cardiac diagnoses). Patients with and without HFpEF did not differ by age, MOCA, blood pressure, heart rate, NYHA class, proportion with atrial fibrillation, Charlson Comorbidity Index, or NT-ProBNP levels. Patients with HFpEF were more likely to be women, overweight or obese, frail, and to be more functionally impaired by 6 minute walk distance and gait speed than those without. Although not statistically significant, patients with HFpEF had clinically significant differences (>5 points) on the physical limitations, symptom burden and clinical summary subscales of the KCCQ, but did not differ by other subscales or by EQ-5D-5L VAS (70±17 vs 73±19, p=0.385). More patients with HFpEF reported daytime dyspnoea (63% vs 46%, p=0.035) and fatigue (81% vs 61%, p=0.008), but not other symptoms compared to those without HFpEF. For both groups BMI was moderately negatively correlated with KCCQ subscale scores, and 6 minute walk distance was positively correlated with KCCQ subscales. Conclusions Nearly 40% were not confirmed as HFpEF indicating the challenges of diagnosis. Patients with confirmed HFpEF differed by sex, overweight/obesity, frailty, functional impairment, and symptoms but not by age or comorbidities from those without HFpEF. These differences were reflected in some subscale scores of the KCCQ, but not how patients reported their quality of life on the KCCQ QoL subscale and EQ-5D-5L VAS. Older patients with HFpEF reported relatively high QoL despite poor health status by functional impairment, frailty and symptoms. Funding Acknowledgement Type of funding source: Public grant(s) – National budget only. Main funding source(s): National Institute of Health Research School of Primary Care Research

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