scholarly journals Living with heritable retinoblastoma and the perceived role of regular follow-up at a retinoblastoma survivorship clinic: ‘That is exactly what I have been missing’

2021 ◽  
Vol 6 (1) ◽  
pp. e000760
Author(s):  
Pernille Axel Gregersen ◽  
Mikkel Funding ◽  
Jan Alsner ◽  
Maja H Olsen ◽  
Jens Overgaard ◽  
...  
Keyword(s):  
Cancer Risk ◽  
Healthcare System ◽  
Social Life ◽  
Daily Living ◽  
Psychosocial Support ◽  
Adult Survivors ◽  
University Hospital ◽  
Normal Life

ObjectiveTo explore living with heritable retinoblastoma, specifically survivors’ perceived role of regular follow-up at a retinoblastoma survivorship clinic.Methods and analysisAdult survivors of heritable retinoblastoma were recruited from the Retinoblastoma Survivorship Clinic, Aarhus University Hospital. Ten survivors participated in individual explorative, semistructured interviews. Thematic data analysis was conducted.ResultsFive key themes relating to vision, social life, family, second cancer risk and the healthcare system were identified. Subthemes relating to the Retinoblastoma Survivorship Clinic included the retinoblastoma coordinator, cancer risk, psychosocial support and genetic knowledge. The retinoblastoma-related physical and psychosocial issues influenced survivors’ everyday living; however, the opportunity to live a normal life varied considerably, with the majority experiencing no major limitations. The need for specialised management and a coordinator was emphasised to be the main value of the Retinoblastoma Survivorship Clinic.ConclusionDespite reporting an overall normal life and no major limitations in daily living activities, our data confirm that heritable retinoblastoma impacts several aspects of daily living. Uniquely, this study demonstrates that the main value of the Retinoblastoma Survivorship Clinic was a specialised contact person and coordinator in the healthcare system, providing continuous and necessary management and guidance after retinoblastoma treatment, and for all aspects of health related to heritable retinoblastoma. The needs of heritable retinoblastoma survivors are complex and extensive, and the specific role of the healthcare system to support survivorship should be prioritised, specialised and multidisciplinary.

scholarly journals COVID-19 Pandemic and Helsinki University Hospital Personnel Psychological Well-Being: Six-Month Follow-Up Results

2021 ◽  
Vol 18 (5) ◽  
pp. 2524
Author(s):  
Tanja Laukkala ◽  
Jaana Suvisaari ◽  
Tom Rosenström ◽  
Eero Pukkala ◽  
Kristiina Junttila ◽  
...  
Keyword(s):  
Psychological Distress ◽  
Psychosocial Support ◽  
Well Being ◽  
Incidence Rates ◽  
University Hospital ◽  
Hospital Personnel ◽  
Front Line ◽  
Hospital District ◽  
Variation Explained

The COVID-19 pandemic has caused an unequally distributed extra workload to hospital personnel and first reports have indicated that especially front-line health care personnel are psychologically challenged. A majority of the Finnish COVID-19 patients are cared for in the Helsinki University Hospital district. The psychological distress of the Helsinki University Hospital personnel has been followed via an electronic survey monthly since June 2020. We report six-month follow-up results of a prospective 18-month cohort study. Individual variation explained much more of the total variance in psychological distress (68.5%, 95% CI 65.2–71.9%) and negative changes in sleep (75.6%, 95% CI 72.2–79.2%) than the study survey wave (1.6%, CI 0.5–5.5%; and 0.3%, CI 0.1–1.2%). Regional COVID-19 incidence rates correlated with the personnel’s psychological distress. In adjusted multilevel generalized linear multiple regression models, potentially traumatic COVID-19 pandemic-related events (OR 6.54, 95% CI 5.00–8.56) and front-line COVID-19 work (OR 1.81, 95% CI 1.37–2.39) was associated with personnel psychological distress but age and gender was not. While vaccinations have been initiated, creating hope, continuous follow-up and psychosocial support is still needed for all hospital personnel.

Appendicular Lean Mass, Grip Strength, and the Development of Hospital-Associated Activities of Daily Living Disability among Older Adults in the Health ABC Study

2021 ◽  
Author(s):  
James S Andrews ◽  
Laura S Gold ◽  
May J Reed ◽  
Jose M Garcia ◽  
Robyn L McClelland ◽  
...  
Keyword(s):  
Older Adults ◽  
Grip Strength ◽  
Lean Mass ◽  
Daily Living ◽  
Adult Survivors ◽  
Regression Analyses ◽  
Appendicular Lean Mass ◽  
Adl Disability ◽  
Separate Regression

Abstract Background Half of all physical disability, including activity of daily living (ADL) disability, among older adults occurs in the setting of hospitalization. This study examines whether appendicular lean mass (ALM) and grip strength, which are commonly included in various definitions of sarcopenia, are associated with development of hospital-associated ADL disability in older adults in the Health ABC Study. Methods Individuals hospitalized during the first 5 years of follow-up (n=1,724) were analyzed. ALM to body mass index (BMI) ratio (ALMBMI), by dual energy x-ray absorptiometry (DXA), and grip strength, by hand-held dynamometery, were assessed annually. Development of new ADL disability was assessed at the time of the next annual assessment after hospitalization. Separate regression analyses modeled the association of pre-hospitalization ALMBMI or grip strength with death before the next scheduled annual assessment. Next, among those who survived to the next annual assessment, separate regression analyses modeled the association of ALMBMI or grip strength with development of ADL disability. Results Each standard deviation decrement in pre-hospitalization grip strength was associated with an adjusted 1.80 odds of new ADL disability at follow-up (95% CI: 1.18, 2.74). Low, compared to not low, grip strength (per FNIH definition) was associated with an adjusted 2.36 odds of ADL disability at follow-up (95% CI: 1.12, 4.97). ALM measures were not associated with development of hospital-associated ADL disability. ALM and grip strength measures were not associated with death. Conclusions Pre-hospitalization lower grip strength may be an important risk factor for ADL disability among older adult survivors of hospitalization.

scholarly journals Perceptions of future health and cancer risk in adult survivors of childhood cancer: Implications for engagement in follow‐up care

Cancer ◽  
2019 ◽  
Vol 125 (6) ◽  
pp. 1008-1009 ◽  
Author(s):  
Christina Signorelli ◽  
Claire E. Wakefield ◽  
Joanna E. Fardell ◽  
Mary‐Ellen Brierley ◽  
Anne‐Sophie Darlington ◽  
...  
Keyword(s):  
Cancer Risk ◽  
Childhood Cancer ◽  
Adult Survivors ◽  
Future Health ◽  
Follow Up Care ◽  
Survivors Of Childhood Cancer

scholarly journals Myocardial characterization in pre-dialysis chronic kidney disease: a study of prevalence, patterns and outcomes

2019 ◽  
Vol 19 (1) ◽  
Author(s):  
Anna M. Price ◽  
Manvir K. Hayer ◽  
Ravi Vijapurapu ◽  
Saad A. Fyyaz ◽  
William E. Moody ◽  
...  
Keyword(s):  
Chronic Kidney Disease ◽  
Kidney Disease ◽  
Left Ventricular ◽  
University Hospital ◽  
Left Ventricular Ejection ◽  
Ventricular Ejection Fraction ◽  
Ckd Stage ◽  
Multiplicative Risk

Abstract Background Late gadolinium enhancement (LGE) using cardiac magnetic resonance (CMR) characterizes myocardial disease and predicts an adverse cardiovascular (CV) prognosis. Myocardial abnormalities, are present in early chronic kidney disease (CKD). To date there are no data defining prevalence, pattern and clinical implications of LGE-CMR in CKD. Methods Patients with pre-dialysis CKD (stage 2–5) attending specialist renal clinics at University Hospital Birmingham (UK) who underwent gadolinium enhanced CMR (1.5 T) between 2005 and 2017 were included. The patterns and presence (LGEpos) / absence (LGEneg) of LGE were assessed by two blinded observers. Association between LGE and CV outcomes were assessed. Results In total, 159 patients received gadolinium (male 61%, mean age 55 years, mean left ventricular ejection fraction 69%, left ventricular hypertrophy 5%) with a median follow up period of 3.8 years [1.04–11.59]. LGEpos was present in 55 (34%) subjects; the patterns were: right ventricular insertion point n = 28 (51%), mid wall n = 18 (33%), sub-endocardial n = 5 (9%) and sub-epicardial n = 4 (7%). There were no differences in left ventricular structural or functional parameters with LGEpos. There were 12 adverse CV outcomes over follow up; 7 of 55 with LGEpos and 5 of 104 LGEneg. LGEpos was not predicted by age, gender, glomerular filtration rate or electrocardiographic abnormalities. Conclusions In a selected cohort of subjects with moderate CKD but low CV risk, LGE was present in approximately a third of patients. LGE was not associated with adverse CV outcomes. Further studies in high risk CKD cohorts are required to assess the role of LGE with multiplicative risk factors.

scholarly journals Myocardial Characterization in Pre-Dialysis Chronic Kidney Disease: A Study of Prevalence, Patterns and Outcomes

2019 ◽  
Author(s):  
Anna M Price ◽  
Manvir K Hayer ◽  
Ravi Vijapurapu ◽  
Saad A Fyyaz ◽  
William E Moody ◽  
...  
Keyword(s):  
Chronic Kidney Disease ◽  
Kidney Disease ◽  
Left Ventricular ◽  
University Hospital ◽  
Left Ventricular Ejection ◽  
Ventricular Ejection Fraction ◽  
Ckd Stage ◽  
Multiplicative Risk

Abstract Background Late gadolinium enhancement (LGE) using cardiac magnetic resonance (CMR) characterizes myocardial disease and predicts an adverse cardiovascular (CV) prognosis. Myocardial abnormalities, are present in early chronic kidney disease (CKD). To date there are no data defining prevalence, pattern and clinical implications of LGE-CMR in CKD.Methods Patients with pre-dialysis CKD (stage 2-5) attending specialist renal clinics at University Hospital Birmingham (UK) who underwent gadolinium enhanced CMR (1.5T) between 2005 and 2017 were included. The patterns and presence (LGEpos) / absence (LGEneg) of LGE were assessed by two blinded observers. Association between LGE and CV outcomes were assessed.Results In total, 159 patients received gadolinium (male 61%, mean age 55 years, mean left ventricular ejection fraction 69%, left ventricular hypertrophy 5%) with a median follow up period of 3.8 years [1.04-11.59]. LGEpos was present in 55 (34%) subjects; the patterns were: right ventricular insertion point n=28 (51%), mid wall n=18 (33%), sub-endocardial n=5 (9%) and sub-epicardial n=4 (7%). There were no differences in left ventricular structural or functional parameters with LGEpos. There were 12 adverse CV outcomes over follow up; 7 of 55 with LGEpos and 5 of 104 LGEneg. LGEpos was not predicted by age, gender, glomerular filtration rate or electrocardiographic abnormalities.Conclusions In a selected cohort of subjects with moderate CKD but low CV risk, LGE was present in approximately a third of patients. LGE was not associated with adverse CV outcomes. Further studies in high risk CKD cohorts are required to assess the role of LGE with multiplicative risk factors.

Reappraising Others' Negative Emotions as a way to Enhance Coping during the COVID-19 Outbreak

2020 ◽  
Author(s):  
Reout Arbel ◽  
Marlyn Khouri ◽  
Jasmine Sagi ◽  
Noga Cohen
Keyword(s):  
Health Economic ◽  
Emotion Regulation ◽  
Social Life ◽  
Economic Status ◽  
The Other ◽  
New Order ◽  
Coping Efficacy ◽  
Interpersonal Emotion Regulation

The COVID-19 outbreak has forced individuals to adjust to a new order in which their liberties are restricted and uncertainty rules. The current work examined the role of other-focusedemotion regulation (ER) training in enhancing coping efficacy and reducing COVID-19 worries. For that, during the first COVID-19 lockdown in Israel, we trained 59 young individuals to perform other-focused emotion regulation, by reappraising others’ written upsetting events. We compared this procedure to a self-reappraisal training, in which 49 participants were asked to reappraise own upsetting events. Both procedures were performed every other day for three weeks. Participants’ coping efficacy was assessed at the daily level, while worries concerning theCOVID-19 effects on health, economic status, and social life were assessed following the training and at a two-month follow-up. The results demonstrated that other-focused ER surpassed self-focused ER. Specifically, participants in the other-reappraisal group exhibited an increase in coping efficacy across the training sessions and a reduction in COVID-19 worries that persisted two months after the training. These findings highlight the role of interpersonal emotion regulation at times of crisis and social isolation.

scholarly journals Incident investigations by the regulatory authority of Swedish healthcare – a 20-year perspective

2015 ◽  
Vol 4 (6) ◽  
pp. 68 ◽  
Author(s):  
Jonas Wrigstad ◽  
Johan Bergström ◽  
Pelle Gustafson
Keyword(s):  
Healthcare System ◽  
Regulatory Authority ◽  
Qualitative Interviews ◽  
Healthcare Providers ◽  
University Hospital ◽  
Office Work ◽  
Structured Interviews ◽  
Incident Investigation ◽  
Micro Level

Objective: The purpose of this study was to describe procedural changes in hospital incident investigations and show the consequences of these changes over time.Methods: A two-stage method was used. First component of the study was a content analysis of 87 incident investigation sconducted 1995-2014 by the regulatory authority after adverse events in a Swedish university hospital. Second component was conducting semi-structured interviews with 11 investigators from all regulatory authority regional offices in Sweden.Results: In a minority of incident investigations, where further demands for action were required by the regulatory authority, a major portion of these were aimed at the micro-level. A plan for follow-up was expressed in only one tenth of the investigations. All investigators had a background from the healthcare system and saw this as advantageous. Their personal memory was claimed to be the only tool when referring to previous cases. Less fieldwork, more office work and more uniformity of language were recognised changes in comparison over time. The role of doing “auditing” was the most common description by the investigators themselves.Conclusions: The micro-level focus of the investigations reflected an organisational structure within the regulatory authority. We saw signs of parallel system weaknesses within the Swedish healthcare system with a clear absence of formalised organisational memory and a malfunctioning follow-up system of incident investigations. This can be seen both regarding the healthcare providers and the regulatory authority. The reports from the qualitative interviews data indicated that “auditing at the office” was considered the main occupation in incident investigations conducted by the regulatory authority.

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