Follow-up outcomes 10 years after arterial switch operation for transposition of the great arteries: comparison of cardiological health status and health-related quality of life to those of the a normal reference population

2007 ◽  
Vol 167 (9) ◽  
pp. 995-1004 ◽  
Author(s):  
Wilfred B. de Koning ◽  
Magdalena van Osch-Gevers ◽  
A. Derk Jan Ten Harkel ◽  
Ron T. van Domburg ◽  
Alma W. Spijkerboer ◽  
...  
Rheumatology ◽  
2020 ◽  
Vol 59 (Supplement_2) ◽  
Author(s):  
Andrew Smith ◽  
Bishma Saqib ◽  
Rebecca Lee ◽  
Wendy Thomson ◽  
Lis Cordingley

Abstract Background Juvenile idiopathic arthritis (JIA) is a heterogeneous group of arthritic conditions presenting in children and young people, in which physical limitations and associated complications can have detrimental effects on physical and psychosocial wellbeing. This study aims to investigate the impact of living with JIA on different aspects of health-related quality of life (HRQoL) and to explore how this changes over time, using data from the Childhood Arthritis Prospective Study (CAPS). Methods Longitudinal data collected as part of CAPS were analysed. HRQoL was assessed at baseline, 1 year and 3 years’ post-diagnosis using the Child Health Questionnaire (CHQ), a parent-completed form for children from 5 years of age. The CHQ measures physical, emotional and social components of child health status. Raw domain scores were transformed via algorithm into values ranging from 0-100, with higher scores indicating better health status. Mean (standard deviation) and median (interquartile range) for each domain were determined, both for the full cohort and by gender. Differences between median scores at baseline and 3 years were assessed using the Wilcoxon signed-rank test. Mean scores of each domain were visually compared with a reference population sample of healthy children from the United States. Results 184 participants completed the questionnaire at all 3 time points. At baseline, compared to the reference population, children with JIA scored lower in every domain although scores were closer between the 2 groups at 3 years. Median scores improved over time, the exception being the general health perceptions domain which decreased after baseline. Domains with the greatest improvement were physical functioning,“bodily pain and social-physical. The largest changes occurred from baseline to 1 year. Statistically significant differences between baseline and 3-year scores were found for all domains. Domain scores for male and female participants were very similar at baseline, though scores for male participants indicated slightly better health at 1 and 3 years for both physical and psychosocial domains. Conclusion JIA has significant impact on HRQoL, which improves within 3 years of diagnosis with the greatest improvement occurring within the first year. Physical health domains show greater improvement over time than psychosocial domains, although psychosocial scores were generally higher throughout the study. Male participants tend to score slightly higher than female participants in both physical and psychosocial domains after baseline. Further research should explore measurable patient, age or disease-related drivers of HRQoL. Disclosures A. Smith None. B. Saqib None. R. Lee None. W. Thomson None. L. Cordingley None.


2021 ◽  
Vol 12 (3) ◽  
pp. 344-351
Author(s):  
Julie Cleuziou ◽  
Anna-Katharina Huber ◽  
Martina Strbad ◽  
Masamichi Ono ◽  
Alfred Hager ◽  
...  

Background: Long-term morbidity and mortality outcomes of the arterial switch operation (ASO) in patients with transposition of the great arteries and Taussig-Bing anomaly are excellent. With an increasing number of patients reaching adolescence and adulthood, more attention is directed toward quality of life. Our study aimed to determine the health-related quality of life (hrQoL) outcomes in patients after the ASO and identify factors influencing their hrQoL. Methods: In this cross-sectional study, hrQoL of patients after ASO was assessed with the German version of the Short Form-36 (SF-36) and the potential association of specified clinical factors was analyzed. Patients of at least 14 years of age who underwent ASO in our institution from 1983 were considered eligible. Results: Of the 355 questionnaires sent to eligible patients, 261 (73%) were available for analysis. Compared to the reference population, patients who had undergone ASO had a significantly higher score in all subscales of the SF-36 except for vitality ( P < .01). Patients with an implanted pacemaker ( P = .002), patients who required at least one reoperation ( P < .001), and patients currently taking cardiac medication ( P < .004) or oral anticoagulation ( P = .036) had lower physical component scores compared to patients without these factors. Conclusions: Patients’ self-assessed and self-reported hrQoL after ASO (using German version of the Short Form 36) is very good. In this population, hrQoL is influenced by reoperation, the need for a pacemaker, and current cardiac medication or anticoagulant use. The development of strategies designed to mitigate or minimize the requirements for, and/or impact of these factors may lead to better hrQoL in this patient population.


2015 ◽  
Vol 25 (5) ◽  
pp. 1285-1294 ◽  
Author(s):  
M. A. C. Van Son ◽  
J. De Vries ◽  
J. A. Roukema ◽  
T. Gosens ◽  
M. H. J. Verhofstad ◽  
...  

2020 ◽  
Author(s):  
Austyn Snowden ◽  
Jenny Young ◽  
Jan Savinc

Abstract Background: Cancer impacts on patients and their families across a range of different domains. For that reason, optimal cancer care has moved away from a disease-centric focus to a more holistic approach in order to proactively support people with their individual needs and concerns. While international policy clearly advocates this agenda, implementation into routine care is limited. Therefore, relevant interventions that measurably improve patient outcomes are essential to understand if this ideal is to become routine multidisciplinary practice. The aim of this study was to analyse the impact of a proactive, holistic, community-based intervention on health-related quality of life in a cohort of people diagnosed with cancer. Secondary aim was to explore the relationship between changes in health status and: cancer type, cancer stage, number of concerns expressed and change in severity of concerns pre and post intervention.Method: Prospective observational cohort study. A convenience sample of 437 individuals were referred to the service ‘Improving the Cancer Journey (ICJ) in the UK. Each completed the Euroqol EQ-5D-3L and visual analogue scale (VAS) and a Holistic Needs Assessment (HNA) during initial visit to the service and again at follow-up review, median 84 days later. Change between scores was tested with paired t-tests and relationships between variables with multiple regression models with heteroscedasticity-consistent standard errors. Results: Participants were White British with median age between 50-64 years. Cancer type and stage were varied. EQ-5D utility scores improved at follow-up by 0.121 [0.0891-0.153], p<.001, and VAS scores improved by 7.81 [5.88-9.74], p<.001. The strongest predictor of change was a decrease in severity of concerns. Cancer stage ‘palliative care’ contributed to a reduction in health status. Conclusion: This study is the first to show that a holistic community intervention dedicated to supporting the individual concerns of participants had both a statistically significant and clinically meaningful impact on participants’ health-related quality of life. The mean change in EQ-5D scores was more than the ‘minimally important clinical difference’ described in the literature. This is important because while quality of life has multiple determinants, this study has shown for the first time that it is possible to capture a clinically meaningful improvement as a function of reducing someone’s personally identified concerns.


2019 ◽  
Vol 104 (11) ◽  
pp. 5073-5083 ◽  
Author(s):  
Emily Krantz ◽  
Kerstin Landin-Wilhelmsen ◽  
Penelope Trimpou ◽  
Inger Bryman ◽  
Ulla Wide

Abstract Context The factors that affect the health-related quality of life (HRQoL) of women with Turner syndrome (TS) are controversial. Objective The aim was to describe the HRQoL of women with TS with a focus on how given GH treatment and comorbidity influence HRQoL in adulthood and to compare HRQoL of women with TS with that of women in the general population. Design Longitudinal cohort study, up to 20 years. Setting The Turner Center at the Section for Endocrinology and Department of Reproductive Medicine at Sahlgrenska University Hospital, Gothenburg, Sweden. Participants Women with TS (n = 200), age range 16 to 78 years, were included consecutively and monitored every fifth year between 1995 and 2018. Women from the World Health Organization MONItoring of trends and determinants for CArdiovascular disease project were used as reference populations. Interventions and Main Outcome Measures HRQoL was measured using the Psychological General Well-Being index and the Nottingham Health Profile. Associations with somatic variables were assessed using longitudinal linear regression models. Results HRQoL was not associated with GH treatment in TS in spite of a mean 5.7 cm taller height. HRQoL was only associated with height per se in one of 13 subscales (P < 0.01). HRQoL was negatively affected by higher age, higher age at diagnosis, and hearing impairment in TS. Women with TS reported a similar HRQoL to the reference population. Conclusions No association between previous GH treatment and HRQoL was found during the up to 20 years of follow-up in women with TS. HRQoL of women with TS and the reference population was similar.


2020 ◽  
Author(s):  
Austyn Snowden ◽  
Jenny Young ◽  
Jan Savinc

Abstract Background Optimal cancer care has moved away from a disease-centric focus to a more holistic approach in order to proactively support people with their individual needs and concerns. While international policy clearly advocates this agenda, implementation into routine care is limited. Therefore, relevant interventions that measurably improve patient outcomes are essential to understand if this ideal is to become routine multidisciplinary practice. The aim of this study was to analyse the impact of a proactive, holistic, community-based intervention on health-related quality of life in a cohort of people diagnosed with cancer. Secondary aim was to explore the relationship between changes in health status and: cancer type, cancer stage, number of concerns expressed and change in severity of concerns pre and post intervention. Method Prospective observational cohort study. A convenience sample of 437 individuals were referred to the service ‘Improving the Cancer Journey (ICJ) in the UK. Each completed the Euroqol EQ-5D-3L and visual analogue scale (VAS) and a Holistic Needs Assessment (HNA) during initial visit to the service and again at follow-up review, median 84 days later. Change between scores was tested with paired t-tests and relationships between variables with multiple regression models with heteroscedasticity-consistent standard errors. Results Participants were White British with median age between 50-64 years. Cancer type and stage were varied. EQ-5D utility scores improved at follow-up by 0.121 [0.0891-0.153], p<.001, and VAS scores improved by 7.81 [5.88-9.74], p<.001. The strongest predictor of change was a decrease in severity of concerns. Cancer stage ‘palliative care’ contributed to a reduction in health status. Conclusion This study is the first to show that a holistic community intervention dedicated to supporting the individual concerns of participants had both a statistically significant and clinically meaningful impact on participants’ health-related quality of life. The mean change in EQ-5D scores was more than the ‘minimally important clinical difference’ described in the literature. This is important because while quality of life has multiple determinants, this study has shown for the first time that it is possible to capture a clinically meaningful improvement as a function of reducing someone’s personally identified concerns


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