scholarly journals The longitudinal use of EmPHasis-10 and CAMPHOR questionnaire health-related quality of life scores in patients with pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension

2021 ◽  
Vol 42 (Supplement_1) ◽  
Author(s):  
P Hendriks ◽  
M C J Van Thor ◽  
M Wapenaar ◽  
P P Chandoesing ◽  
L Van Den Toorn ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Pulmonary Hypertension ◽  
Symptom Severity ◽  
Health Related Quality ◽  
Symptom Severity Score ◽  
Related Quality ◽  
Health Related ◽  
Echocardiographic Parameters ◽  
Pulmonary Arterial

Abstract Background Health-related quality of life (HRQoL) is impaired in patients with pulmonary hypertension (PH). The EmPHasis-10 and CAMPHOR questionnaires are developed to evaluate HRQoL specifically in patients with PH. Data on the longitudinal use of both questionnaires are still limited. Purpose This paper will evaluate and compare the longitudinal value of two health-related quality of life questionnaires specific for patients with pulmonary hypertension (CAMPHOR and EmPHasis-10 questionnaires) using a broad spectrum of clinical anchor points. Furthermore we will establish minimal clinically important differences (MCID) for both questionnaires. Methods Sixty-one treatment naïve pulmonary arterial hypertension or chronic thromboembolic patients were prospectively included. Patients were treated according to the current ESC/ERS guidelines. We compared EmPHasis-10 and CAMPHOR scores between baseline, 6 and 12 months of follow-up and evaluated the correlation between these scores and a 5-scale symptom severity score, 5-scale overall health score, NYHA-classification, six minute walk test distance (6MWD), NT-proBNP and echocardiographic parameters. MCIDs were calculated using distribution and anchor based calculations. Results After one year of treatment a significant reduction in EmPHasis-10 score and CAMPHOR QoL and symptoms domain score was observed. Moderate to good correlations were observed between the questionnaires and the overall-health and symptom severity score and 6MWD. No relevant correlations were seen between the questionnaires and NT-pro-BNP and echocardiographic parameters. EmPHasis-10 scores showed strong correlations with all CAMPHOR domains. The MCID for the EmPHasis-10 questionnaire was −8. The MCIDs for the CAMPHOR domains were: activity −3, symptoms −4, QoL −3. Conclusion The EmPHasis-10 and CAMPHOR questionnaires are valid tools for the longitudinal measurement of HRQoL in patients with PH. The much shorter EmPHasis-10 correlates well with the CAMPHOR domain scores and with the clinical endpoints and it may be easier to use in daily practice. We established acceptable MCIDs. FUNDunding Acknowledgement Type of funding sources: Private company. Main funding source(s): This research project was supported by an unrestricting grant by Actelion pharmaceuticals.

scholarly journals Symptom severity and its effect on health-related quality of life over time in patients with pulmonary hypertension: a multisite longitudinal cohort study

2018 ◽  
Vol 5 (1) ◽  
pp. e000263 ◽  
Author(s):  
Janelle Yorke ◽  
Christi Deaton ◽  
Malcolm Campbell ◽  
Linda McGowen ◽  
Paul Sephton ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Pulmonary Hypertension ◽  
Cohort Study ◽  
Symptom Severity ◽  
Anxiety And Depression ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Over Time

IntroductionThe aim of this cohort study was to examine health-related quality of life (HRQoL) and symptomatology in patients with pulmonary hypertension (PH) and explore factors that influence its evolution over time.MethodsA prospective longitudinal multisite cohort study. Participants were recruited from specialist UK PH centres and completed a questionnaire pack at baseline, 6, 12 and 18 months to assess HRQoL (emPHasis-10), dyspnoea, fatigue, sleep, anxiety and depression.Results185 patients entered the study at baseline and 126 (68%) completed month 18. At baseline, patients had significant impairment of HRQoL, anxiety, depression, dyspnoea and severe fatigue. No significant changes, apart from a reduction in the Hospital Anxiety and Depression Scale-Anxiety score (P=0.04), were observed over 18 months. Depression and dyspnoea were predictors of HRQoL (P=0.002 and P=0.03, respectively). Oxygen use was also associated with diminished HRQoL and increased symptom severity.ConclusionPatients with PH experience high levels of symptom severity and the negative impact on HRQoL was unchanged over time. The use of oxygen therapy, in particular, was associated with a significant impact on HRQoL. Further study of factors impacting HRQoL and interventions that target a combination of physiological and psychosocial consequences of living with PH are needed.

scholarly journals QOLP-07. HEALTH-RELATED QUALITY OF LIFE AND SYMPTOM BURDEN IN PATIENTS WITH NEWLY DIAGNOSED GLIOBLASTOMA TREATED WITH BEVACIZUMAB BEYOND PROGRESSION: A PROSPECTIVE TRIAL

2020 ◽  
Vol 22 (Supplement_2) ◽  
pp. ii176-ii176
Author(s):  
Shota Tanaka ◽  
Yoshitaka Narita ◽  
Akitake Mukasa ◽  
Motoo Nagane ◽  
Tomokazu Aoki ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Symptom Severity ◽  
Symptom Burden ◽  
Newly Diagnosed ◽  
Health Related Quality ◽  
Symptom Severity Score ◽  
Related Quality ◽  
Health Related ◽  
Newly Diagnosed Glioblastoma

Abstract BACKGROUND In BIOMARK trial, patients with newly diagnosed glioblastoma were treated with standard chemoradiotherapy combined with first-line bevacizumab; a subset of patients continued bevacizumab beyond progression (BBP). Neurocognitive function (NCF), symptom burden, and health-related quality of life (HRQoL) were examined as secondary endpoints. PATIENTS AND METHODS In the primary protocol, newly diagnosed glioblastoma patients aged 20-75 received standard 6-week radiotherapy combined with temozolomide and bevacizumab followed by 4-week cycles of temozolomide plus bevacizumab, and then 2-3-week cycles of bevacizumab monotherapy. Upon recurrence, patients were subjected to the secondary protocol with 2-3-week cycles of bevacizumab monotherapy with or without other chemotherapeutic agents. NCF tests (Hopkins verbal learning test-revised, trail making test, and controlled oral word association), EORTC QLQ-C30/BN20, and MDASI-BT were completed by the patients. Time to deterioration (TTD) was defined as the time from randomization until a pre-specified change from baseline without further improvement or death. The Kaplan-Meier method and the log-rank test were used to assess TTD for each subscale of the above tests. RESULTS Overall, 94 patients were enrolled in the study. Analyses were based on the full analysis set cohort (N=90), excluding non-glioblastoma diagnosis by central review. The median overall survival (OS) and progression-free survival (PFS) were 25.0 and 14.9 months, respectively. Baseline HRQoL and symptom burden subscales (emotional functioning, symptom severity score, affective factor, and focal factor) were significantly associated with PFS. The median TTD was 8.7, 7.5, 8.1 months for global health status/QoL, symptom severity score, interference score, respectively. Among patients who experienced recurrence, disease progression was apparently preceded by deterioration in terms of symptom burden. CONCLUSIONS Detailed analysis of HRQoL and symptom burden may aid care of glioblastoma patients throughout the disease trajectory.

510 A Profile of Physical Performance Variables in an Out-Patient Adult Population with Narcolepsy

SLEEP ◽  
2021 ◽  
Vol 44 (Supplement_2) ◽  
pp. A201-A201
Author(s):  
Ragy Tadrous ◽  
Julie Broderick ◽  
Niamh Murphy ◽  
Lisa Slattery ◽  
Gillian Quinn ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Physical Performance ◽  
Symptom Severity ◽  
Health Related Quality ◽  
Cardiopulmonary Fitness ◽  
Performance Variables ◽  
Related Quality ◽  
Health Related

Abstract Introduction Narcolepsy can significantly impact the physical and mental wellbeing of people with narcolepsy, and has been associated with significant reductions in quality of life and physical performance. People with narcolepsy demonstrate many barriers to being physically fit and active, such as sleepiness and social isolation. Despite physical functioning and vitality being the most affected domains of health-related quality of life in this cohort, little is known about how physical performance variables are affected in people with narcolepsy. Methods This cross-sectional study profiled the physical performance of adults with narcolepsy attending the Narcolepsy Centre located in St. James’s Hospital. Participants underwent a physical performance test battery that investigated cardiopulmonary fitness, physical activity, muscle strength and endurance. Furthermore, health-related quality of life (HRQoL), symptom severity and sedentary behaviour was ascertained through self-report questionnaires. Results A total of 23 participants were recruited in this study. The majority of participants were female (n=13, 56.52%) and the mean age was 31.53 (± 13.17) years. Physical performance was generally found to be lower than age-and-gender matched normative values for cardiopulmonary fitness, physical activity and muscle strength and endurance. Participants’ completed 42.20 ± 21.41 minutes of moderate-vigorous physical activity daily as measured by actigraphy. Considerable sedentary behaviour was objectively measured in this sample (10.21 hours). Symptom severity was high as measured by the Epworth Sleepiness Scale and the Narcolepsy Severity Scale, and participants reported reduced quality of life when compared to general population norms (US, UK, France and Norway). Conclusion Markedly reduced physical performance was identified in this sample of people with narcolepsy, irrespective of participant age, gender and BMI. Future research should explore the role of exercise in improving the physical fitness in people with narcolepsy, and the influence of exercise on HRQoL and symptom severity in this cohort. Support (if any) This study was completed as part of Mr Ragy Tadrous’ Master of Science (MSc) degree in Trinity College Dublin. This degree was co-sponsored by the Physiotherapy Department in St. James’s Hospital, Dublin.

Effect of Pulmonary Arterial Hypertension-Specific Therapies on Health-Related Quality of Life

CHEST Journal ◽  
2014 ◽  
Vol 146 (3) ◽  
pp. 686-708 ◽  
Author(s):  
Gilles Rival ◽  
Yves Lacasse ◽  
Sylvie Martin ◽  
Sébastien Bonnet ◽  
Steeve Provencher
Keyword(s):  
Quality Of Life ◽  
Pulmonary Arterial Hypertension ◽  
Arterial Hypertension ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Pulmonary Arterial
Sign in / Sign up

Export Citation Format

Share Document