scholarly journals AB0300 LUPUS DISEASE ACTIVITY CORRELATES WITH QUALITY OF LIFE BUT NOT WITH HEALTH LITERACY STATUS

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 1176.2-1176
Author(s):  
E. Eraslan ◽  
R. Bilici Salman ◽  
H. Satiş ◽  
A. Avanoglu Guler ◽  
H. Karadeniz ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Literacy ◽  
Disease Activity ◽  
Lupus Erythematosus ◽  
Patient Reported Outcome ◽  
The Body ◽  
Limited Health Literacy ◽  
Patient Reported ◽  
Limited Health

Background:Systemic lupus erythematosus (SLE) is a chronic autoimmune disease of unknown etiology that can affect any organ of the body. SLE is associated with adverse effects on both health and non-health-related quality of life (HRQOL and non-HRQOL). Lupus PRO is a patient reported outcome measure that has been validated in many languages. It has 44 items that cover both HRQOL and non-HRQOL (1). Health literacy is defined as the degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions. Multiple studies indicate that people with limited health literacy have worse health status and higher rates of hospitalization (2).Objectives:We aimed to evaluate the relationship between the LLDAS (Lupus Low Disease Activity State) criteria and the Lupus PRO test, as well as the health literacy status of lupus patients.Methods:83 SLE patients (94% women) were included in the study. We performed Lupus PRO and the European Health Literacy Survey tests during the routine follow-up visits of lupus patients to our rheumatology outpatient clinic and admissions to rheumatology inpatient clinic. Available clinical data on medical records were obtained, physician global assessments (PGA) were recorded by the attending physician.Results:LLDAS criteria strongly and inversely correlated with the total score, as well as the mood subunit of the Lupus PRO. Similarly, it also significantly inversely correlated with the body appearence and goals subunits. Health literacy status of the patients did not correlate with their LLDAS scores, ie their disease activities.Conclusion:Our results suggest that lupus disease activity, assessed by LLDAS criteria, significantly correlates with measures of quality of life, spesicifically Lupus PRO test, but not with health literacy status. Further studies are needed to evaluate if health literacy is related with damage, hospitalization or mortality associated with lupus.References:[1]Jolly M, Pickard AS, Block JA, Kumar RB, Mikolaitis RA, Wilke CT, et al., editors. Disease-specific patient reported outcome tools for systemic lupus erythematosus. Seminars in arthritis and rheumatism; 2012: Elsevier.[2]Paasche-Orlow MK, Parker RM, Gazmararian JA, Nielsen-Bohlman LT, Rudd RR. The prevalence of limited health literacy. Journal of general internal medicine. 2005;20(2):175-84.Disclosure of Interests:None declared

scholarly journals Impact of Limited Health Literacy on Patient‐Reported Outcomes in Systemic Lupus Erythematosus

2020 ◽  
Vol 73 (1) ◽  
pp. 110-119 ◽  
Author(s):  
Patricia Katz ◽  
Maria Dall’Era ◽  
Laura Trupin ◽  
Stephanie Rush ◽  
Louise B. Murphy ◽  
...  
Keyword(s):  
Systemic Lupus Erythematosus ◽  
Health Literacy ◽  
Lupus Erythematosus ◽  
Patient Reported Outcomes ◽  
Systemic Lupus ◽  
Limited Health Literacy ◽  
Patient Reported ◽  
Limited Health

scholarly journals Patient-Reported Outcomes for Quality of Life in SLE: Essential in Clinical Trials and Ready for Routine Care

2021 ◽  
Vol 10 (16) ◽  
pp. 3754
Author(s):  
Matthew H. Nguyen ◽  
Frank F. Huang ◽  
Sean G. O’Neill
Keyword(s):  
Quality Of Life ◽  
Clinical Trials ◽  
Lupus Erythematosus ◽  
Clinical Care ◽  
Routine Care ◽  
Patient Reported Outcome ◽  
Current Evidence ◽  
Patient Reported ◽  
Pro Tools

Patient-reported outcome (PRO) instruments are widely used to assess quality of life in Systemic Lupus Erythematosus (SLE) research, and there is growing evidence for their use in clinical care. In this review, we evaluate the current evidence for their use in assessing quality of life in SLE in both research and clinical settings and examine the different characteristics of the commonly used PRO tools. There are now several well-validated generic and SLE-specific tools that have demonstrated utility in clinical trials and several tools that complement activity and damage measures in the clinical setting. PRO tools may help overcome physician–patient discordance in SLE and are valuable in the assessment of fibromyalgia and type 2 symptoms such as widespread pain and fatigue. Future work will identify optimal PRO tools for different settings but, despite current limitations, they are ready to be incorporated into patient care.

scholarly journals Systematic Review of Development and Content Validity of Patient-reported Outcome Measures in Inflammatory Bowel Disease: Do We Measure What We Measure?

2020 ◽  
Vol 14 (9) ◽  
pp. 1299-1315 ◽  
Author(s):  
Emma M van Andel ◽  
Brechtje D M Koopmann ◽  
Femke Crouwel ◽  
Casper G Noomen ◽  
Nanne K H de Boer ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Disease Activity ◽  
Outcome Measures ◽  
Content Validity ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Self Report ◽  
Patient Reported ◽  
Validity Studies

Abstract Background and Aims Patient-reported outcome measures are increasingly important in daily care and research in inflammatory bowel disease [IBD]. This study provides an overview of the content and content validity of IBD-specific patient-reported outcome measures on three selected constructs. Methods Databases were searched up to May 2019 for development and/or content validity studies on IBD-specific self-report measures on health-related quality of life, disability, and self-report disease activity in adults. Evidence was synthesised on content validity in three aspects: relevance, comprehensiveness, and comprehensibility following the COnsensus-based Standards for the selection of health Measurement INstruments methodology. Questionnaire items were organised in themes to provide an overview of important aspects of these constructs. Results For 14/44 instruments, 25 content validity studies were identified and 25/44 measures had sufficient content validity, the strongest evidence being of moderate quality, though most evidence is of low or very low quality. The Crohn’s Life Impact Questionnaire and IBD questionnaire-32 on quality of life, the IBD-Control on disease activity, and the IBD Disability Index Self-Report and its 8-item version on disability, have the strongest evidence of sufficient relevance, comprehensiveness, and comprehensibility, ranging from moderate to very low quality. A fair number of recurring items themes, possibly important for the selected constructs, was identified. Conclusions The body of evidence for content validity of IBD-specific health-related quality of life, self-report disease activity, and disability self-report measures is limited. More content validity studies should be performed after reaching consensus on the constructs of interest for IBD, and studies should involve patients.

scholarly journals Exploring the Importance of Health Literacy for the Quality of Life in Patients with Heart Failure

2018 ◽  
Vol 15 (8) ◽  
pp. 1761 ◽  
Author(s):  
Marija Jovanić ◽  
Marija Zdravković ◽  
Dejana Stanisavljević ◽  
Aleksandra Jović Vraneš
Keyword(s):  
Quality Of Life ◽  
Heart Failure ◽  
Health Literacy ◽  
Noncommunicable Diseases ◽  
Total Quality ◽  
Limited Health Literacy ◽  
Heart Failure Patients ◽  
Patients With Heart Failure ◽  
Limited Health

As with all other chronic noncommunicable diseases, adequate health literacy plays a key role in making the right decisions in the treatment of heart failure. Patients with heart failure and a lower health literacy have a reduced quality of life. A cross-sectional study among 200 patients with heart failure was conducted at a state university hospital in Belgrade, Serbia. The European Health Literacy Questionnaire, HLS-EU-Q47, was used to assess health literacy. Quality of life was measured with the generic SF-36 and the Minnesota Living with Heart Failure Questionnaire. Descriptive and analytical statistical analysis was applied. More than half of the respondents (64%) had limited health literacy. The lowest mean health literacy index (28.01 ± 9.34) was within the disease prevention dimension, where the largest number of respondents showed limited health literacy (70%). Our patients had a poorer quality of life in the physical dimension, and the best scores were identified in the emotional role and social functioning. Health literacy was highly statistically significant and an independent predictor of quality of life (physical, mental, and total quality of life). Improving health literacy can lead to better decisions in the treatment of disease and quality of life in heart failure patients.

Adaptation and cross-cultural validation of the Spanish version of the Thyroid-Related Quality-of-Life Patient-Reported Outcome (ThyPRO) questionnaire

2018 ◽  
Author(s):  
Lleo Ana Maria Gonzalez ◽  
Mauro Boronat Cortes ◽  
Ulla Feldt-Rasmussen ◽  
Carlos Rodriguez Perez ◽  
AEse Krogh Rasmussen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Patient Reported Outcome ◽  
Cross Cultural ◽  
Spanish Version ◽  
Patient Reported ◽  
Related Quality ◽  
Cultural Validation

Assessment of Quality of Life (QoL) in Systemic Lupus Erythematosus Patients at a Tertiary Care Hospital in Egypt

2019 ◽  
Vol 15 (4) ◽  
pp. 304-311
Author(s):  
Mervat E. Behiry ◽  
Sahar A. Ahmed ◽  
Eman H. Elsebaie
Keyword(s):  
Quality Of Life ◽  
Systemic Lupus Erythematosus ◽  
Disease Activity ◽  
Lupus Erythematosus ◽  
Tertiary Care ◽  
Damage Index ◽  
Life Questionnaire ◽  
Care Hospital ◽  
Systemic Lupus

: Systemic Lupus Erythematosus (SLE) has a profound impact on quality of life. Objective: The objective of this study was to explore the quality of life among Egyptian SLE patients and to assess its relationships with demographic and clinical features. Methods: One hundred sixty-four SLE patients were recruited for this study. Demographic information; clinical parameters; disease activity, as evaluated by the systemic lupus erythematosus Disease Activity Index; and organ damage, as assessed by the systemic lupus international Collaborative Clinics/American College of Rheumatology Damage Index, were reported. Quality of life was assessed with a quality of life questionnaire specifically designed for patients with systemic lupus erythematosus; the questions are grouped in the following six domains: physical function, sociooccupational activities, symptoms, treatment, mood, and self-image. Higher values indicate poorer quality of life. Conclusion: Poor quality of life among Egyptian SLE patients and disease activity are strongly related to impaired lifestyles in these patients.

scholarly journals An assessment of the use of patient reported outcome measurements (PROMs) in cancers of the pelvic abdominal cavity: identifying oncologic benefit and an evidence-practice gap in routine clinical practice

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Miss Charlotte L. Moss ◽  
Ajay Aggarwal ◽  
Asad Qureshi ◽  
Benjamin Taylor ◽  
Teresa Guerrero-Urbano ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Abdominal Cavity ◽  
Patient Reported Outcome ◽  
Oncologic Outcomes ◽  
Review Of The Literature ◽  
Outcome Measurements ◽  
Patient Reported ◽  
Cancer Setting

Abstract Background Patient reported outcome measurements (PROMs) are emerging as an important component of patient management in the cancer setting, providing broad perspectives on patients’ quality of life and experience. The use of PROMs is, however, generally limited to the context of randomised control trials, as healthcare services are challenged to sustain high quality of care whilst facing increasing demand and financial shortfalls. We performed a systematic review of the literature to identify any oncological benefit of using PROMs and investigate the wider impact on patient experience, in cancers of the pelvic abdominal cavity specifically. Methods A systematic review of the literature was conducted using MEDLINE (Pubmed) and Ovid Gateway (Embase and Ovid) until April 2020. Studies investigating the oncological outcomes of PROMs were deemed suitable for inclusion. Results A total of 21 studies were included from 2167 screened articles. Various domains of quality of life (QoL) were identified as potential prognosticators for oncologic outcomes in cancers of the pelvic abdominal cavity, independent of other clinicopathological features of disease: 3 studies identified global QoL as a prognostic factor, 6 studies identified physical and role functioning, and 2 studies highlighted fatigue. In addition to improved outcomes, a number of included studies also reported that the use of PROMs enhanced both patient-clinician communication and patient satisfaction with care in the clinical setting. Conclusions This review highlights the necessity of routine collection of PROMs within the pelvic abdominal cancer setting to improve patient quality of life and outcomes.

Significance of patient-reported outcomes for occupational resumption and quality of life after cardiac rehabilitation

2020 ◽  
Vol 41 (Supplement_2) ◽  
Author(s):  
A Salzwedel ◽  
I Koran ◽  
E Langheim ◽  
A Schlitt ◽  
J Nothroff ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Performance ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Funding Source ◽  
Patient Reported ◽  
Returning To Work

Abstract Introduction Comprehensive cardiac rehabilitation (CR) programs based on the bio-psycho-social approach of the international classification of functioning and disease are carried out to achieve improved prognosis, superior health-related quality of life (HRQL) and social integration. We aimed to identify predictors of returning to work (RTW) and HRQL among cardiovascular risk factors and physical performance as well as patient-reported outcome measures (PROMs) modifiable during CR. Methods We designed a prospective observational multi-center study and enrolled 1,586 patients (2017/18) in 12 German rehabilitation centers regardless of their primary allocation diagnoses (e.g. acute myocardial infarction (AMI), coronary artery bypass grafting (CABG), coronary artery disease (CAD), valvular disease). Besides general data (e.g. age, gender, diagnoses), parameters of risk factor management (e.g. smoking, lipid profile, hypertension, lifestyle change motivation), physical performance (e.g. maximum exercise capacity, endurance training load, 6-min walking distance), and PROMs (e.g. depression, heart-focused anxiety, HRQL, subjective well-being, somatic and mental health, pain, general self-efficacy, pension desire as well as self-assessment of occupational prognosis using several questionnaires) were documented at CR admission and discharge. 6 months after discharge, status of RTW and HRQL (SF-12) were captured by a follow-up (FU) survey and analyzed in multivariable regression models with multiple imputation of missing values. Results Out of the study participants, 1,262 patients (54±7 years, 77% men) responded to the follow-up survey and could be analyzed regarding the outcome parameters. Most of them were assigned to CR primarily due to AMI (40%) or CAD without myocardial infarction (18%), followed by heart valve diseases in 12% of patients and CABG (8%). 864 patients (69%) returned to work within the follow-up period. Pension desire, negative self-assessed occupational prognosis, heart-focussed anxiety, major life events, smoking and heart failure were negatively associated with RTW, while higher endurance training load, HRQL and work stress were positively associated (Figure 1). HRQL after 6 months was determined more by PROMs (e.g. pension desire, heart-focused anxiety, physical/mental HRQL in SF-12, physical/mental health in indicators of rehab-status questionnaire (IRES-24), stress, well-being in the World Health Organization well-being index and self-efficacy expectations) than by clinical parameters or physical performance. Conclusions Patient-reported outcome measures predominantly influenced RTW and HRQL in heart-disease patients, whereas patients' pension desire and heart-focussed anxiety had a dominant impact on all investigated endpoints. Therefore, the multi-component CR approach focussing on psychosocial support is crucial for subjective health prognosis and occupational resumption. Figure 1. Predictors of returning to work Funding Acknowledgement Type of funding source: Public grant(s) – National budget only. Main funding source(s): German pension insurance

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