scholarly journals Psychological Distress and Quality of Life in Participants Undergoing Genetic Testing for Arrhythmogenic Right Ventricular Cardiomyopathy Caused by TMEM43 p.S358L: Is It Time to Offer Population-Based Genetic Screening?

2021 ◽  
pp. 1-8
Author(s):  
Cassidy Brothers ◽  
Holly Etchegary ◽  
Fiona Curtis ◽  
Charlene Simmonds ◽  
Jim Houston ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Psychological Distress ◽  
Right Ventricular ◽  
Genetic Screening ◽  
Arrhythmogenic Right Ventricular Cardiomyopathy ◽  
Population Based ◽  
Ventricular Cardiomyopathy ◽  
Health Related Qol ◽  
Health Related

<b><i>Purpose:</i></b> We have identified 27 families in Newfoundland and Labrador (NL) with the founder variant <i>TMEM43</i> p.S358L responsible for 1 form of arrhythmogenic right ventricular cardiomyopathy. Current screening guidelines rely solely on cascade genetic screening, which may result in unrecognized, high-risk carriers who would benefit from preemptive implantable cardioverter-defibrillator therapy. This pilot study explored the acceptability among subjects to <i>TMEM43</i> p.S358L population-based genetic screening (PBGS) in this Canadian province. <b><i>Methods:</i></b> A prospective cohort study assessed attitudes, psychological distress, and health-related quality of life (QOL) in unselected individuals who underwent genetic screening for the <i>TMEM43</i> p.S358L variant. Participants (<i>n</i> = 73) were recruited via advertisements and completed 2 surveys at baseline, 6 months, and 1 year which measured health-related QOL (SF-36v2) and psychological distress (Impact of Events Scale). <b><i>Results:</i></b> No variant-positive carriers were identified. Of those screened through a telephone questionnaire, &#x3e;95% felt positive about population-genetic screening for <i>TMEM43</i> p.S358L, though 68% reported some degree of anxiety after seeing the advertisement. There were no significant changes in health-related QOL or psychological distress scores over the study period. <b><i>Conclusion:</i></b> Despite some initial anxiety, we show support for PBGS among research subjects who screened negative for the <i>TMEM43</i> p.S358L variant in NL. These findings have implications for future PBGS programs in the province.

Quality of life metrics in arrhythmogenic right ventricular cardiomyopathy patients: The impact of age, shock and sex

2017 ◽  
Vol 248 ◽  
pp. 216-220 ◽  
Author(s):  
Ashley C. Rhodes ◽  
Brittney Murray ◽  
Crystal Tichnell ◽  
Cynthia A. James ◽  
Hugh Calkins ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Right Ventricular ◽  
Arrhythmogenic Right Ventricular Cardiomyopathy ◽  
Ventricular Cardiomyopathy ◽  
The Impact

scholarly journals Trajectories of health-related quality of life and psychological distress in patients with colorectal cancer: A population-based study

2021 ◽  
Vol 158 ◽  
pp. 144-155
Author(s):  
Seyed M. Qaderi ◽  
Joost A.G. van der Heijden ◽  
Rob H.A. Verhoeven ◽  
Johannes H.W. de Wilt ◽  
Jose A.E. Custers ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Colorectal Cancer ◽  
Psychological Distress ◽  
Population Based ◽  
Health Related Quality ◽  
Population Based Study ◽  
Related Quality ◽  
Health Related

RF12 CLINICAL OUTCOME AND HEALTH RELATED QUALITY OF LIFE AFTER CRYOPRESERVED HOMOGRAFT IMPLANTATION FOR RIGHT VENTRICULAR OUTFLOW RECONSTRUCTION

2018 ◽  
Vol 19 ◽  
pp. e65
Author(s):  
F.D. Petridis ◽  
E. Angeli ◽  
L. Careddu ◽  
G. Romano ◽  
F. Tonelli ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Clinical Outcome ◽  
Right Ventricular ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

scholarly journals Quality of life in urologic cancer patients: importance of and satisfaction with specific quality of life domains

2021 ◽  
Author(s):  
Katja Leuteritz ◽  
Diana Richter ◽  
Anja Mehnert-Theuerkauf ◽  
Jens-Uwe Stolzenburg ◽  
Andreas Hinz
Keyword(s):  
Quality Of Life ◽  
General Population ◽  
Cancer Patients ◽  
Patient Group ◽  
Control Group ◽  
Health Related Qol ◽  
Health Related ◽  
Importance Ratings ◽  
Subjective Importance

Abstract Purpose Quality of life (QoL) has been the subject of increasing interest in oncology. Most examinations of QoL have focused on health-related QoL, while other factors often remain unconsidered. Moreover, QoL questionnaires implicitly assume that the subjective importance of the various QoL domains is identical from one patient to the next. The aim of this study was to analyze QoL in a broader sense, considering the subjective importance of the QoL components. Methods A sample of 173 male urologic patients was surveyed twice: once while hospitalized (t1) and once again 3 months later (t2). Patients completed the Questions on Life Satisfaction questionnaire (FLZ-M), which includes satisfaction and importance ratings for eight dimensions of QoL. A control group was taken from the general population (n = 477). Results Health was the most important QoL dimension for both the patient and the general population groups. While satisfaction with health was low in the patient group, the satisfaction ratings of the other seven domains were higher in the patient group than in the general population. The satisfaction with the domain partnership/sexuality showed a significant decline from t1 to t2. Multiple regression analyses showed that the domains health and income contributed most strongly to the global QoL score at t2 in the patient group. Conclusion Health is not the only relevant category when assessing QoL in cancer patients; social relationships and finances are pertinent as well. Importance ratings contribute to a better understanding of the relevance of the QoL dimensions for the patients.

scholarly journals Quality of life assessments in clinical practice using either the EORTC-QLQ-C30 or the SEIOQL-DW: a randomized study

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Åsa Kettis ◽  
Hanna Fagerlind ◽  
Jan-Erik Frödin ◽  
Bengt Glimelius ◽  
Lena Ring
Keyword(s):  
Quality Of Life ◽  
Clinical Practice ◽  
Significant Difference ◽  
Patient Reported ◽  
Health Related Qol ◽  
Health Related ◽  
Secondary Outcomes ◽  
The Impact ◽  
Over Time

Abstract Background Effective patient-physician communication can improve patient understanding, agreement on treatment and adherence. This may, in turn, impact on clinical outcomes and patient quality of life (QoL). One way to improve communication is by using patient-reported outcome measures (PROMs). Heretofore, studies of the impact of using PROMs in clinical practice have mostly evaluated the use of standardized PROMs. However, there is reason to believe that individualized instruments may be more appropriate for this purpose. The aim of this study is to compare the effectiveness of the standardized QoL-instrument, the European Organization for Research and Treatment of Cancer Quality of Life C-30 (EORTC-QOL-C30) and the individualized QoL instrument, the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), in clinical practice. Methods In a prospective, open-label, controlled intervention study at two hospital out-patient clinics, 390 patients with gastrointestinal cancer were randomly assigned either to complete the EORTC-QOL-C30 or the SEIQoL-DW immediately before the consultation, with their responses being shared with their physician. This was repeated in 3–5 consultations over a period of 4–6 months. The primary outcome measure was patients’ health-related QoL, as measured by FACIT-G. Patients’ satisfaction with the consultation and survival were secondary outcomes. Results There was no significant difference between the groups with regard to study outcomes. Neither intervention instrument resulted in any significant changes in health-related QoL, or in any of the secondary outcomes, over time. This may reflect either a genuine lack of effect or sub-optimization of the intervention. Since there was no comparison to standard care an effect in terms of lack of deterioration over time cannot be excluded. Conclusions Future studies should focus on the implementation process, including the training of physicians to use the instruments and their motivation for doing so. The effects of situational use of standardized or individualized instruments should also be explored. The effectiveness of the different approaches may depend on contextual factors including physician and patient preferences.

The association of childhood maltreatment, somatization and health-related quality of life in adult age: Results from a population-based cohort study

2021 ◽  
Vol 120 ◽  
pp. 105226
Author(s):  
Katharina Piontek ◽  
Ulrich Wiesmann ◽  
Christian Apfelbacher ◽  
Henry Völzke ◽  
Hans Jörgen Grabe
Keyword(s):  
Quality Of Life ◽  
Cohort Study ◽  
Childhood Maltreatment ◽  
Population Based ◽  
Health Related Quality ◽  
Adult Age ◽  
Related Quality ◽  
Health Related

The predictive validity of health-related quality of life measures: mortality in a longitudinal population-based study

2007 ◽  
Vol 16 (9) ◽  
pp. 1539-1546 ◽  
Author(s):  
Mark S. Kaplan ◽  
Jean-Marie Berthelot ◽  
David Feeny ◽  
Bentson H. McFarland ◽  
Saeeda Khan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Predictive Validity ◽  
Population Based ◽  
Health Related Quality ◽  
Population Based Study ◽  
Quality Of Life Measures ◽  
Related Quality ◽  
Health Related

scholarly journals The health-related quality of life burden of co-morbid cardiovascular disease and major depressive disorder in Australia: findings from a population-based, cross-sectional study

2012 ◽  
Vol 22 (1) ◽  
pp. 37-44 ◽  
Author(s):  
Adrienne O’Neil ◽  
Christopher E. Stevenson ◽  
Emily D. Williams ◽  
Duncan Mortimer ◽  
Brian Oldenburg ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Population Based ◽  
Cross Sectional Study ◽  
Health Related Quality ◽  
Sectional Study ◽  
Major Depressive ◽  
Cross Sectional ◽  
Related Quality ◽  
Health Related
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