The Impact of Symptom Severity on Health-Related Quality of Life in Patients with Narcolepsy

Abstract Background: Narcolepsy has deleterious implications on daily life. However, few studies have fully assessed the severity of pentad symptoms of Chinese adults with narcolepsy type 1 (NT1), as well as the relation with health-related quality of life (HRQoL). It is still not clear how the global functioning of patients with NT1 are affected by these pentad symptoms and which does specific symptom affect HRQoL. This is the first study to assess the pentad symptom severity and its correlation with HRQoL in patients with NT1.Methods: Our cross-sectional study is to assess the pentad symptom severity and its correlation with HRQoL in patients with NT1. A total of 174 patients with NT1 were recruited. They completed Narcolepsy Severity Scale (NSS) and European Quality of Life-5 Dimensions Questionnaire (EQ-5D) including five dimensions (EQ-5D utility values) and a visual analog scale (EQ-5D VAS). The relation between severity of symptoms and HRQoL dimensions was assessed by Pearson correlation analyses. Logistic regression was used to identify the significant predictors of HRQoL. Nomogram was established based on results of independent predictors factors on logistic regression analyses. Results: The scores for NSS, EQ-5D utility values and EQ-5D VAS were 29.89±10.08, 0.78±0.09 and 64.30±19.84 in patients with NT1 respectively. NSS score showed a significantly correlation with self-care (r=0.157, P<0.05), usual activities (r=0.236, P<0.01), pain/discomfort (r=0.174, P<0.05), anxiety/depression (r=0.2, P<0.01) and EQ-5D utility values (r=-.261, P<0.01). EDS (excessive daytime sleep), cataplexy, hallucinations, paralysis and disrupted nocturnal sleep (DNS) were significant associated to EQ-5D VAS (r ranged from -0,154 to -0.354, P<0.05). EDS (OR=-0.297, 95% CI -1.892- -0.634) and DNS (OR=-0.16, 95% CI -0.7307- -0.446) were predictors of HRQoL. Regards the NSS scores, NSS score (OR=-0.360, 95% CI -0.979- -0.438) and treated (OR=0.215, 95% CI 3.567-16.188) were predictors of the metrics of HRQoL. The C-indices of the nomogram was 0.726 (95% CI 0.686-0.766). Conclusion: The severity of symptoms could disrupt self-care and usual activities and increase pain/discomfort and anxiety/depression. NSS score could be used for predicting HRQoL, but with a modest precision.

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Association Between Self-Reported Sedentary Behavior and Health-Related Quality of Life Among Multimorbidity Patients in Singapore

American Journal of Health Promotion ◽

10.1177/08901171211001274 ◽

2021 ◽

pp. 089011712110012

Author(s):

Jue Hua Lau ◽

Eng Sing Lee ◽

Yunjue Zhang ◽

Janhavi Ajit Vaingankar ◽

Edimansyah Abdin ◽

...

Keyword(s):

Quality Of Life ◽

Physical Activity ◽

Sedentary Behavior ◽

Self Care ◽

Health Related Quality ◽

Related Quality ◽

Health Related ◽

Anxiety Depression ◽

Eq Vas

Background: The study examined the association between sedentary behavior and self-rated health-related quality of life (HRQoL) in a sample of patients with multimorbidity in Singapore recruited from a primary care clinic. Methods: Sedentary behavior and physical activity were assessed with the International Physical Activity Questionnaire short form (IPAQ-SF). HRQoL was assessed with EuroQol-5 Dimension (EQ-5D) utility index, visual analogue scale (EQ-VAS) and its 5 subscales (Mobility, Self-care, Usual Activities, Pain/Discomfort, and Anxiety/Depression). Depression was assessed via Patient Health Questionnaire (PHQ-9). Logistic and linear regression analyses adjusting for the effect of physical activity, depression, and sociodemographic variables (i.e., age, gender, ethnicity, education) were conducted. Results: 932 patients participated in the study (mean age:64.5±8.5 years, range: 35-80) and 55% were men. Results indicated that women were less likely to have sedentary behavior (≥7 hrs/day) than men. Results indicated sedentary behavior was associated with lower EQ-5D index scores, but not EQ-VAS scores. Participants who were sedentary for ≥7 hrs/day were more likely to endorse having problems with mobility, self-care, and usual activities, but not with pain/discomfort, nor anxiety/depression. Conclusion: Sedentary behavior was associated with poorer HRQoL. There is a need for interventions and health promotions to reduce sedentary behavior in patients with multimorbidity.

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Health-related quality of life (HRQoL), anxiety, depression and impulsivity in patients with advanced Gastroenteropancreatic Neuroendocrine Tumours (GEPNETs)

Endocrine Abstracts ◽

10.1530/endoabs.46.p3 ◽

2016 ◽

Author(s):

Alexandra Lewis ◽

Xin Wang ◽

Laurice Magdalani ◽

Colsom Bashir ◽

Wasat Mansoor ◽

...

Keyword(s):

Quality Of Life ◽

Neuroendocrine Tumours ◽

Health Related Quality ◽

Related Quality ◽

Health Related ◽

Gastroenteropancreatic Neuroendocrine Tumours ◽

Anxiety Depression

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

SLEEP ◽

10.1093/sleep/zsab072.509 ◽

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.

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Impact of flooding on health-related quality of life in England: results from the National Study of Flooding and Health

European Journal of Public Health ◽

10.1093/eurpub/ckaa049 ◽

2020 ◽

Vol 30 (5) ◽

pp. 942-948

Author(s):

Charlotte Robin ◽

Charles Beck ◽

Ben Armstrong ◽

Thomas David Waite ◽

G James Rubin ◽

...

Keyword(s):

Quality Of Life ◽

A Priori ◽

National Study ◽

Health Related Quality ◽

Euroqol Group ◽

Related Quality ◽

Health Related ◽

Anxiety Depression ◽

The Impact

Abstract Background Flooding can have extensive effects on the health and wellbeing of affected communities. The impact of flooding on psychological morbidity has been established; however, the wider impacts of flooding exposure, including on health-related quality of life (HRQoL), have not been described. Methods Using data from the English National Study of Flooding and Health cohort, HRQoL 2 and 3 years post-flooding was assessed with the EuroQol Group EQ-5D-5L tool. Associations between exposure groups (flooding and disruption from flooding) and HRQoL were assessed, using ordinal and linear regression, adjusting for a priori confounders. Results For both 2 and 3 years post-flooding, the median HRQoL scores were lower in the flooded and disrupted groups, compared with unaffected respondents. A higher proportion of flooded and disrupted respondents reported HRQoL problems in most dimensions of the EQ-5D-5L, compared with unaffected respondents. In year 2, independent associations between exposure to flooding and experiencing anxiety/depression [adjusted odds ratio (aOR) 7.7; 95% CI 4.6–13.5], problems with usual activities (aOR 5.3; 95% CI 2.5–11.9) and pain/discomfort (aOR 2.4; 95% CI 1.5–3.9) were identified. These problems persisted 3 years post-flooding; associations between exposure to flooding and experiencing anxiety/depression (aOR 4.3; 95% CI 2.5–7.7), problems with usual activities (aOR 2.9; 95% CI 1.5–6.1) and pain/discomfort (aOR 2.5; 95% CI 1.5–4.2) were identified. Conclusions Exposure to flooding and disruption from flooding significantly reduces HRQoL. These findings extend our knowledge of the impacts of flooding on health, with implications for multi-agency emergency response and recovery plans.

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