Quality of life following surgery for congenital cardiac malformations in neonates and infants

2005 ◽  
Vol 15 (S1) ◽  
pp. 174-178 ◽  
Author(s):  
Kathleen Mussatto ◽  
James Tweddell
Keyword(s):  
Quality Of Life ◽  
Future Research ◽  
Cardiac Malformations ◽  
The Past ◽  
Congenital Cardiac Disease ◽  
Major Shift ◽  
Neonates And Infants ◽  
The Impact

The past two decades have witnessed a major shift towards repair of most congenital cardiac malformations during the neonatal or infant periods of life.1 Early anatomic correction or palliation, dramatic improvements in survival, and reduced morbidity due to improvements in perioperative and long-term medical management, have resulted in new populations of children that have reaped the benefits of the best care currently available for treatment of congenital cardiac disease. The impact of the congenital cardiac malformations, however, extends far beyond the walls of the hospital or clinic where we diagnose, treat, and follow our patients. The breakthrough of achieving predictable results with repair or palliation of most lesions during the neonatal and infant periods mandates us to look beyond survival, and to examine the lives our patients lead when they are outside of our care. Our purpose in this review is to discuss the measures of psychosocial outcome that are appropriate for exploration in those neonates and infants who survive cardiac surgery, to explore what is known about the psychosocial outcomes and quality of life for these patients, and what needs exist for future research.

Impact of night markets on residents' quality of life

2020 ◽  
Vol 48 (8) ◽  
pp. 1-12
Author(s):  
Hao-Kai Hung ◽  
Chang-Che Wu
Keyword(s):  
Quality Of Life ◽  
Social Exchange ◽  
Social Exchange Theory ◽  
Exchange Theory ◽  
Future Research ◽  
Q Method ◽  
The Impact ◽  
Night Markets

There is a lack of discussion on the impact of night tourism activities on the quality of life of residents in the area where these activities are held. We adopted the Q method to explore the effect of the night market in Taiwan on residents in the area from the perspective of 4 groups: Long-term neighbors who love the prosperity of the night market, residents who live in the area where the night market is held, residents who dislike tourists but do not mind the vendors, and residents who have integrated the night market into their own life. We discuss and address the conflicts between the perspectives of these groups using social disruption theory, social exchange theory, and empathy. Implications of the findings are described along with directions for future research.

Self-Compassion and Quality of Life in Adults Who Stutter

2020 ◽  
Vol 29 (4) ◽  
pp. 2097-2108
Author(s):  
Robyn L. Croft ◽  
Courtney T. Byrd
Keyword(s):  
Quality Of Life ◽  
Social Connectedness ◽  
The Self ◽  
Future Research ◽  
Self Compassion ◽  
Adults Who Stutter ◽  
And Gender ◽  
Relationship Of ◽  
The Impact

Purpose The purpose of this study was to identify levels of self-compassion in adults who do and do not stutter and to determine whether self-compassion predicts the impact of stuttering on quality of life in adults who stutter. Method Participants included 140 adults who do and do not stutter matched for age and gender. All participants completed the Self-Compassion Scale. Adults who stutter also completed the Overall Assessment of the Speaker's Experience of Stuttering. Data were analyzed for self-compassion differences between and within adults who do and do not stutter and to predict self-compassion on quality of life in adults who stutter. Results Adults who do and do not stutter exhibited no significant differences in total self-compassion, regardless of participant gender. A simple linear regression of the total self-compassion score and total Overall Assessment of the Speaker's Experience of Stuttering score showed a significant, negative linear relationship of self-compassion predicting the impact of stuttering on quality of life. Conclusions Data suggest that higher levels of self-kindness, mindfulness, and social connectedness (i.e., self-compassion) are related to reduced negative reactions to stuttering, an increased participation in daily communication situations, and an improved overall quality of life. Future research should replicate current findings and identify moderators of the self-compassion–quality of life relationship.

scholarly journals The impact of lymphedema on health-related quality of life up to 10 years after breast cancer treatment

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Mads G. Jørgensen ◽  
Navid M. Toyserkani ◽  
Frederik G. Hansen ◽  
Anette Bygum ◽  
Jens A. Sørensen
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Cancer Treatment ◽  
Breast Cancer Treatment ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact

AbstractThe impact of breast cancer-related lymphedema (BCRL) on long-term quality of life is unknown. The aim of this study was to investigate the impact of BCRL on health-related quality of life (HRQoL) up to 10 years after breast cancer treatment. This regional population-based study enrolled patients treated for breast cancer with axillary lymph node dissection between January 1st 2007 and December 31th 2017. Follow up and assessments of the included patients were conducted between January 2019 and May 2020. The study outcome was HRQoL, evaluated with the Lymphedema Functioning, Disability and Health Questionnaire, the Disabilities of the Arm, Shoulder and Hand Questionnaire and the Short Form (36) Health Survey Questionnaire. Multivariate linear logistic regression models adjusted for confounders provided mean score differences (MDs) with 95% confidence intervals in each HRQoL scale and item. This study enrolled 244 patients with BCRL and 823 patients without BCRL. Patients with BCRL had significantly poorer HRQoL than patients without BCRL in 16 out of 18 HRQoL subscales, for example, in physical function (MDs 27, 95%CI: 24; 30), mental health (MDs 24, 95%CI: 21; 27) and social role functioning (MDs 20, 95%CI: 17; 23). Age, BMI, BCRL severity, hand and dominant arm affection had only minor impact on HRQoL (MDs < 5), suggesting a high degree of inter-individual variation in coping with lymphedema. This study showed that BCRL is associated with long-term impairments in HRQoL, especially affecting the physical and psychosocial domains. Surprisingly, BCRL diagnosis rather than clinical severity drove the largest impairments in HRQoL.

scholarly journals P181 Long-term improvement in axial spondyloarthritis clinical outcomes following 2-weeks of intensive education and rehabilitation: results from the Bath residential rehabilitation programme

Rheumatology ◽  
2021 ◽  
Vol 60 (Supplement_1) ◽  
Author(s):  
Rosie Barnett ◽  
Anita McGrogan ◽  
Matthew Young ◽  
Charlotte Cavill ◽  
Mandy Freeth ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Disease Activity ◽  
Axial Spondyloarthritis ◽  
Rehabilitation Programme ◽  
Spinal Mobility ◽  
The Impact

Abstract Background/Aims  Axial spondyloarthritis (axSpA) is a chronic rheumatic condition, characterised by inflammatory back pain - often associated with impaired function and mobility, sleep disturbance, fatigue, and reduced quality of life. Despite the vast advances in pharmacological treatments for axSpA over the last few decades, physical activity and rehabilitation remain vital for effective disease management. At the Royal National Hospital for Rheumatic Diseases in Bath (RNHRD), the 2-week inpatient axSpA rehabilitation programme has been integral to axSpA care since the 1970’s. Prior research has demonstrated significant short-term improvements in spinal mobility (BASMI), function (BASFI) and disease activity (BASDAI) following course attendance. However, the long-term outcomes are yet to be evaluated in this unique cohort. Methods  Since the early 1990’s, clinical measures of spinal mobility, function and disease activity have been routinely collected at the RNHRD at all clinical appointments through administration of the BASMI, BASFI and BASDAI, respectively. Dates of attending the axSpA course and standard clinical and treatment follow-up data were also collected. Multiple linear regression models were used to investigate the impact of course attendance on final reported BASMI, BASDAI and BASFI scores (final score=most recent). Length of follow-up was defined as time between first and last recorded BASMI. Results  Of the 203 patients within the Bath SPARC200 cohort, 77.8% (158/203) had attended at least one rehabilitation course throughout follow-up. 70.0% (140/203) of patients were male. The mean duration of follow-up was 13.5 years (range 0-35 years); 28.1% (57/203) of individuals with 20+ years of follow-up. Course attendance (yes versus no) significantly reduced final BASMI score by 0.84 (p = 0.001, 95%CI -1.31 to -0.37) and final BASDAI score by 0.74 (p = 0.018, 95%CI -1.34 to -0.13). Although course attendance reduced final BASFI by 0.45 (95%CI -1.17 to 0.28), this relationship did not reach significance (p = 0.225). Whilst minimally clinically important difference (MCID) is, to our knowledge, yet to be defined for BASMI, MCIDs were achieved long-term for both BASDAI and BASFI - defined by van der Heijde and colleagues in 2016 as 0.7 and 0.4 for BASDAI and BASFI, respectively. Conclusion  These results provide novel evidence to support the integral role of education, physical activity and rehabilitation in the management of axSpA. Future work should investigate additional outcomes of critical importance to patients and clinicians, such as fatigue, quality of life and work productivity. Furthermore, a greater understanding of the factors that confound these outcomes may provide insights into those patients who may most benefit from attending a 2-week rehabilitation course. In addition to facilitating identification of those patients who may require additional clinical support. Disclosure  R. Barnett: None. A. McGrogan: None. M. Young: None. C. Cavill: None. M. Freeth: None. R. Sengupta: Honoraria; Biogen, Celgene, AbbVie, Novartis, MSD. Grants/research support; Novartis, UCB.

scholarly journals Community intervention strategies to reduce the impact of financial strain and promote financial well-being: a comprehensive rapid review

2021 ◽  
Vol 28 (1) ◽  
pp. 42-50
Author(s):  
Nicole M. Glenn ◽  
Lisa Allen Scott ◽  
Teree Hokanson ◽  
Karla Gustafson ◽  
Melissa A. Stoops ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Community Intervention ◽  
Well Being ◽  
Small Sample ◽  
Financial Strain ◽  
Rapid Review ◽  
Research Centre ◽  
Future Research ◽  
The Impact

Financial well-being describes when people feel able to meet their financial obligations, feel financially secure and are able to make choices that benefit their quality of life. Financial strain occurs when people are unable to pay their bills, feel stressed about money and experience negative impacts on their quality of life and health. In the face of the global economic repercussions of the COVID-19 pandemic, community-led approaches are required to address the setting-specific needs of residents and reduce the adverse impacts of widespread financial strain. To encourage evidence-informed best practices, a provincial health authority and community-engaged research centre collaborated to conduct a rapid review. We augmented the rapid review with an environmental scan and interviews. Our data focused on Western Canada and was collected prior to the pandemic (May–September 2019). We identified eight categories of community-led strategies to promote financial well-being: systems navigation and access; financial literacy and skills; emergency financial assistance; asset building; events and attractions; employment and educational support; transportation; and housing. We noted significant gaps in the evidence, including methodological limitations of the included studies (e.g. generalisability, small sample size), a lack of reporting on the mechanisms leading to the outcomes and evaluation of long-term impacts, sparse practice-based data on evaluation methods and outcomes, and limited intervention details in the published literature. Critically, few of the included interventions specifically targeted financial strain and/or well-being. We discuss the implications of these gaps in addition to possibilities and priorities for future research and practice. We also consider the results in relation to the COVID-19 pandemic and its economic consequences.

FC 113UTILITY OF A SINGLE ITCH-RELATED QUESTION AND THE SKINDEX-10 QUESTIONNAIRE FOR ASSESSING PRURITUS AND PREDICTING HEALTH RELATED QUALITY OF LIFE IN HEMODIALYSIS PATIENTS

2021 ◽  
Vol 36 (Supplement_1) ◽  
Author(s):  
Marcelo Lopes ◽  
Angelo Karaboyas ◽  
Kazuhiko Tsuruya ◽  
Issa Al Salmi ◽  
Nidhi Sukul ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Predictive Power ◽  
Related Question ◽  
Health Related Quality ◽  
The Past ◽  
Related Quality ◽  
Health Related ◽  
The Impact ◽  
Single Question

Abstract Background and Aims Chronic kidney disease-associated pruritus (CKD-aP) has been linked with comorbid conditions, and poorer mental and physical health-related quality-of-life (HR-QOL) in hemodialysis (HD) patients. The Skindex-10 questionnaire and a single itch-related question from the KDQOL-36 have been used to evaluate the impact of pruritus in HD patients. In this analysis, we investigated the performance of the single question and the Skindex-10 as predictors of HR-QOL in HD patients. Method We analyzed data from 4940 HD patients from 17 countries enrolled during year 2 of phase 5 of the Dialysis Outcomes and Practice Patterns Study (DOPPS, 2013): Belgium, Canada, Germany, the Gulf Cooperation Council (GCC) (Bahrain, Kuwait, Oman, Qatar, Saudi Arabia, United Arab Emirates), Italy, Japan, Russia, Spain, Sweden, Turkey, the UK, and the US. The Skindex-10 scores were calculated as per Mathur et al. (2010): responses to each of the 10 questions (0-6 scale), pertaining to how often patients were bothered by itchy skin in the past week, were summed to create a total summary score (range 0-60, with 0 indicating not at all bothered) and 3 subdomain scores [i.e., itching (disease) and its impact on mood/emotional and social functioning]. The itch-related single question from the KDQOL-36 asked: “During the past 4 weeks, to what extent were you bothered by itchy skin?” with response options including “not at all, somewhat, moderately, very much, extremely”. Itch-related measures were collected concurrently with HR-QOL measures: Physical (PCS) and Mental (MCS) Component Summary scores, derived from the SF-12. We calculated the Spearman correlation coefficient between the Skindex-10 (total score and for each of its 3 domains) and the single question. We used separate linear regression models to evaluate the predictive power of 1) the Skindex-10 score, 2) the single itch question, and 3) both, on PCS and MCS outcomes, based on R-squared values. Results Skindex-10 scores varied across countries; the proportion of patients with a very high Skindex-10 score (≥50) ranged from 12% in the GCC to only 2% in Italy, Russia and Sweden. Across all countries, 55% had a Skindex-10 score=0. For the single pruritus question, 37% answered that they were not at all bothered while 16% were very much or extremely bothered by itchy skin. The correlation between the single question and Skindex-10 was 0.71 overall, 0.72 for the disease domain, 0.62 for the social domain, and 0.70 for the emotional domain. Patient characteristics were similar across categories of both pruritus measures. Regression analyses showed that every 10 points higher in the Skindex-10 score was associated with 1.2 point lower PCS (95% CI: -1.4, -0.9) and 1.5 point lower MCS (95% CI: -1.7, -1.3) scores. Similarly, the single question showed increasingly poorer PCS and MCS scores with a greater degree of being bothered by pruritus: compared with patients not at all bothered by itchy skin, patients who were moderately bothered had 4.8 point lower PCS (-5.7, -3.9) and 4.3 point lower MCS (-5.3, -3.3) scores. The R-squared for PCS was 0.065 when using the single question and only 0.033 when using the Skindex-10 as the predictor. R-squared was also higher for MCS when using the single question (0.056) vs. Skindex-10 (0.052). When including both pruritus measures, the predictive power for PCS did not improve compared to the single question (R2=0.065), while increasing only slightly (R2=0.063) for MCS. Conclusion The single KDQOL-36 question about the extent bothered by itchy skin over the past 4 weeks was highly correlated with the Skindex-10 score and at least as predictive – if not more – of key HR-QOL measures as the Skindex-10. In daily clinical practice, utilizing 1 simple question about the extent patients are bothered by itchy skin can be a feasible and efficient way for routine assessment of pruritus to better identify HD patients with not only CKD-aP but also poorer HR-QoL.

scholarly journals Aging, Health, and Quality of Life for Older People Living With HIV in Sub-Saharan Africa: A Review and Proposed Conceptual Framework

2017 ◽  
Vol 31 (1) ◽  
pp. 109-138 ◽  
Author(s):  
Mark J. Siedner
Keyword(s):  
Quality Of Life ◽  
Conceptual Framework ◽  
Care Delivery ◽  
Sub Saharan Africa ◽  
People Living With Hiv ◽  
Sub Saharan ◽  
Living With Hiv ◽  
The Impact

Objective: The number of people living with HIV (PLWH) over 50 years old in sub-Saharan Africa is predicted to triple in the coming decades, to 6-10 million. Yet, there is a paucity of data on the determinants of health and quality of life for older PLWH in the region. Methods: A review was undertaken to describe the impact of HIV infection on aging for PLWH in sub-Saharan Africa. Results: We (a) summarize the pathophysiology and epidemiology of aging with HIV in resource-rich settings, and (b) describe how these relationships might differ in sub-Saharan Africa, (c) propose a conceptual framework to describe determinants of quality of life for older PLWH, and (d) suggest priority research areas needed to ensure long-term gains in quality of life for PLWH in the region. Conclusions: Differences in traditional, lifestyle, and envirnomental risk factors, as well as unique features of HIV epidemiology and care delivery appear to substantially alter the contribution of HIV to aging in sub-Saharan Africa. Meanwhile, unique preferences and conceptualizations of quality of life will require novel measurement and intervention tools. An expanded research and public health infrastructure is needed to ensure that gains made in HIV prevention and treamtent are translated into long-term benefits in this region.

The impact of cancer and quality of life for long-term survivors

2008 ◽  
Vol 17 (9) ◽  
pp. 891-900 ◽  
Author(s):  
Brad J. Zebrack ◽  
Jaehee Yi ◽  
Laura Petersen ◽  
Patricia A. Ganz
Keyword(s):  
Quality Of Life ◽  
The Impact ◽  
Long Term Survivors

scholarly journals Latinxs with HIV: Depressive Cognitive Alterations as a Precursor to Cardio-Motor Deficits

2021 ◽  
Vol 10 (2) ◽  
pp. 10-22
Author(s):  
Aneesah Hyder ◽  
Martin Rosario
Keyword(s):  
Quality Of Life ◽  
Cardiovascular Health ◽  
Future Research ◽  
Motor Deficits ◽  
Cultural Challenges ◽  
Cardiovascular Assessment ◽  
Health Related ◽  
The Impact ◽  
Cognitive Alterations

HIV is a debilitating infection that often presents with health-related complications, further reducing quality of life. Of the most common comorbidities accompanying HIV is depression, which can induce cognitive alterations alongside those resulting from the virus. Latinxs are disproportionately susceptible to both afflictions and face innumerable challenges in the identification and diagnosis of depression. Consequently, HIV-infected Latinxs may experience additional cognitive symptomatology from the simultaneous prevalence of depression and HIV, potentially affecting their gait and cardiovascular profiles. This study aimed to determine the impact of depression on cardio-motor components in HIV-infected Latinxs. Records of 291 stable HIV+ participants were collected from La Perla de Gran Precio Community Center, analyzed for depression, and respectively allocated to the depression group (70) and the group without depression (221). Cardio-motor values were obtained by conducting the Ross treadmill test, a submaximal cardiovascular assessment. An ANOVA revealed similarities in cardiomotor profiles between groups, alluding to the absence of depression-induced modifications to gait and cardiovascular health. Community exercise and cardiopulmonary intervention programs are beneficial to the quality of life in this population during all stages of HIV. However, HIV-infected Latinxs with depression face acute cultural challenges, causing diagnoses and treatment oversights and deficiencies for those who are suffering. Public health efforts should aim to remove barriers facing this population to ultimately reduce the inflated prevalence of both afflictions. Future research should focus on the crucial differentiation of Latinx depressive symptoms from those identical in HIV prior to reinvestigating cardiomotor alterations.

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