scholarly journals 0764 Pitolisant In The Treatment Of Patients With Narcolepsy: A 2-year, Prospective, Observational, Single-center Study

SLEEP ◽  
2020 ◽  
Vol 43 (Supplement_1) ◽  
pp. A290-A290
Author(s):  
A Triller ◽  
A Hof zum Berge ◽  
B Finger ◽  
U Kallweit
Keyword(s):  
Quality Of Life ◽  
Adverse Events ◽  
Short Form ◽  
Term Treatment ◽  
Real World Data ◽  
Open Label ◽  
Long Term Treatment ◽  
Nighttime Sleep

Abstract Introduction Pitolisant, a selective histamine H3 receptor antagonist/inverse agonist, increases histamine release in the brain. The efficacy of pitolisant in adults with narcolepsy was demonstrated in randomized, placebo-controlled trials. This study evaluated long-term use of pitolisant in clinical practice. Methods This prospective, open-label, 2-year, observational study was conducted at a major narcolepsy center in Germany and enrolled adults with a diagnosis of narcolepsy who had no prior treatment with pitolisant. Assessments included excessive daytime sleepiness (Epworth Sleepiness Scale [ESS]), weekly rate of cataplexy (WRC), and health-related quality of life (Short-Form Veterans RAND [VR-36]). Results The study enrolled 147 patients: mean age, 29.9 years; 57.1% female, 65.3% with cataplexy, and 66.7% with disrupted nighttime sleep. In patients who were tested, CSF hypocretin-1 was <110 pg/mL in 70.8% (51/72), and 79.4 % (77/97) were HLA-DQB1*0602 positive. The pitolisant dose was 35.6 mg/d in 38.1% of patients at Month 3, and 73.5% at Month 24. Most patients received concomitant narcolepsy medications (63.3% at baseline; 79.6% at month 24). Mean ESS score decreased from 16.2 at baseline to 12.4 at Month 12 and 12.6 at Month 24. Mean WRC was reduced by 31% at Month 24. Significant improvement in quality of life was noted at Months 12 and 24 on VR-36 subscales that assess general health perception, vitality, and social function. In all, 38 patients (25.8%) discontinued from the study before Month 24: 15.0% for lack of efficacy and 10.8% due to adverse events. The most common adverse events were disrupted nighttime sleep (29.3% of patients), headache (15.5%), and nausea (12.2%). Conclusion These real-world data show that long-term treatment with pitolisant (usually with 35.6 mg/d) was efficacious for reducing EDS and cataplexy and improving quality of life in patients with narcolepsy. Treatment was generally well tolerated. Support Writing support funded by Harmony Biosciences, LLC.

scholarly journals The Use of Antidepressants in the Long-Term Treatment Should not Improve the Impact of Fibromyalgia on Quality of Life

2013 ◽  
Vol 9 (1) ◽  
pp. 120-124 ◽  
Author(s):  
MG Carta ◽  
V Ruggiero ◽  
F Sancassiani ◽  
F Cutrano ◽  
AR Manca ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Rating Scale ◽  
Short Form ◽  
Term Treatment ◽  
Observational Research ◽  
Short Term Treatment ◽  
Long Term Treatment ◽  
The Impact

Background: Antidepressant (AD) drugs are effective in the short term treatment of fibromyalgia (FM). It may be useful to study the long-term impact of AD on patients with FM. Methods: One-year follow-up study on 23 females with FM divided into groups on AD (ADg-N=7), and not taking AD (NADg-N=11). Evaluation at t1 and at the end (t2) with the Fibromyalgia Impact Questionnaire (FIQ); at t2 with: SCID-IV; Mood Disorder Questionnaire (MDQ); Short Form-12; Hamilton Depression Rating Scale (HAM-D); Functioning Assessment Short Test (FAST) Results: After a year the AD group showed a worst impact of the disease by FIQ (p=0.017), worsened quality of life by SF-12 (p<0.01), and disability linked to bipolar symptoms by FAST (p=0.05). About 40% of the sample was screened positive at MDQ without difference in the two groups. The patients who recovered from a depressive episode did not differ between ADg and NADg (20% vs 33.3%), and were fewer than expected from the literature (40-60%). The HAM-D score at the end of the trial was worse in the ADg (p<0.03). Limitations: Observational research on few patients, not specifically designed to test the hypothesis. The results have a heuristic value only. Discussion: The results should be read in the light of the high prevalence of patients screened positive for Bipolar Disorders and of the well-known poor response of the mood symptoms to antidepressants in Bipolar Depression. The deterioration in the long-term management of FM patients following AD treatments suggests the need for new and robust studies.

scholarly journals Real-World, Long-Term Quality of Life Following Therapeutic OnabotulinumtoxinA Treatment

2016 ◽  
Vol 43 (5) ◽  
pp. 687-696 ◽  
Author(s):  
Mandar Jog ◽  
Theodore Wein ◽  
Meetu Bhogal ◽  
Sonja Dhani ◽  
Robert Miller ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Short Form ◽  
Health Utility ◽  
Primary Outcome Measure ◽  
Term Treatment ◽  
Subsequent Treatment ◽  
Long Term Treatment ◽  
Over Time

AbstractBackground:OnabotulinumtoxinA is an efficacious treatment option for patients with various conditions. Although studies have reported on the efficacy of onabotulinumtoxinA, quality of life (QoL) data are limited. This study evaluated QoL in patients treated with onabotulinumtoxinA across various therapeutic indications.Methods:MDs on BOTOX Utility (MOBILITY) was a prospective, multicenter, observational Canadian study in patients initiating (naïve) or receiving ongoing (maintenance) onabotulinumtoxinA treatment. Health utility was the primary outcome measure and was obtained from the Short Form-12 Health Survey using the Short Form-6D at baseline, week 4 posttreatment, and up to five subsequent treatment visits. The safety cohort included patients who received ≥1 onabotulinumtoxinA treatment.Results:The efficacy cohort included 1062 patients; the majority were Caucasian, female, and on maintenance onabotulinumtoxinA treatment. Adult focal spasticity (n=398), blepharospasm (n=81), cerebral palsy (n=22), cervical dystonia (n=234), hemifacial spasm (n=116), and hyperhidrosis (n=211) patients were included. Baseline health utility was generally higher in maintenance versus naïve patients; however, naïve patients showed the greatest improvements over time. Health utility was generally maintained or trended toward improvement across all cohorts, including maintenance patients who had been treated for up to 22 years before study entry. Eighteen of 1222 patients (2%) in the safety cohort reported 28 treatment-related adverse events; eight were serious in four patients.Conclusion:MOBILITY is the largest prospective study to date to provide QoL data over a variety of therapeutic indications following treatment with onabotulinumtoxinA. Although the QoL burden varies by disease, data suggest that long-term treatment may help improve or maintain QoL over time.

scholarly journals The ‘bio-assay’ quality of life might be a better marker of disease activity in acromegalic patients than serum total IGF-I concentrations

2005 ◽  
Vol 152 (2) ◽  
pp. 217-224 ◽  
Author(s):  
Ingrid E Bonapart ◽  
Ron van Domburg ◽  
Saskia M T H ten Have ◽  
Wouter W de Herder ◽  
Ruud A M Erdman ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Biochemical Parameter ◽  
Term Treatment ◽  
Normal Serum ◽  
Open Label ◽  
Mortality And Morbidity ◽  
Long Term Treatment ◽  
Igf I

Objectives: To investigate the quality of life (QoL) in acromegalic patients in relation to biochemical parameters. Design and methods: Single-center, open label study in 14 acromegalic patients (eight woman and six men, age 33–77 years), with normal serum IGF-I levels during long-term treatment with monthly injections of 20 mg of long-acting octreotide. We investigated which biochemical parameter might reflect optimal QoL, using the SF-36 questionnaire. Results: We observed that six patients had a low QoL score at baseline in the same range as observed in cancer patients. The other eight patients had a normal QoL. GH, IGF-I nor free IGF-I could discriminate these two subgroups at baseline. After skipping one monthly injection, all six subjects with the low QoL escaped in their free IGF-I concentrations. Also total IGF-I concentrations escaped in four of these six. In the subjects with normal QoL, free IGF-I levels remained normal in all, while total IGF-I levels only escaped in one. Conclusions: This study tells us that the currently used biochemical criteria for disease control in acromegaly might be sufficient in assessing long-term mortality and morbidity, but they are insufficient in addressing the most important parameter from the patient’s perspective – QoL.

The crystal arthropathies

2013 ◽  
Vol 6 (11) ◽  
pp. 681-687 ◽  
Author(s):  
Robert A Jones ◽  
Brian Quilty
Keyword(s):  
Quality Of Life ◽  
Risk Factors ◽  
Inflammatory Arthritis ◽  
Term Treatment ◽  
Routine Practice ◽  
Treatment Goals ◽  
Crystal Arthropathies ◽  
Long Term Treatment

Unlike many other forms of inflammatory arthritis, the crystal arthropathies are routinely diagnosed and managed in primary care. Gout, in particular, is relatively commonplace and rates of other types of crystal-related arthritis are predicted to increase. These are, therefore, conditions that GPs and trainees will regularly encounter during routine practice. While the clinical features and pathophysiology of gout and pseudo-gout are well described, the long-term treatment goals and options of management are often less well understood, and opportunities to assess for associated co-morbidities can easily be missed. GPs can be central in optimising management by promptly and appropriately addressing acute symptoms, preventing recurrent attacks, minimising disability and work absences, reducing cardiovascular risk factors, improving general health and enhancing quality of life.

scholarly journals Concerns and Quality of Life of Cancer Survivors Across the Survivorship Trajectory: A Singapore Perspective

2019 ◽  
Author(s):  
Gek Phin Chua ◽  
Quan Sing Ng ◽  
Hiang Khoon Tan ◽  
Whee Sze Ong
Keyword(s):  
Quality Of Life ◽  
Cancer Survivors ◽  
Cancer Treatment ◽  
Cancer Survivorship ◽  
Recurrence Risk ◽  
Term Treatment ◽  
Fear Of Recurrence ◽  
Long Term Treatment

Abstract Background The aim of this study is to determine the main concerns of survivors at various stages of the cancer survivorship of the cancer survivorship trajectory and to assess whether these concerns have any effect on their quality of life (QOL). The overall goal was to use the insights from the study to guide practice on patient care. Methods A cross-sectional survey of 1107 cancer survivors diagnosed with colorectal, breast, lung, gynaecological, prostate or liver cancers from a cancer centre in Singapore. Eligible patients self-completed a questionnaire adapted from the Mayo Clinic Cancer Centre’s Cancer Survivors Survey of Needs. Results The top 5 concerns among all survivors were cancer treatment and recurrence risk (51%), followed by long-term treatment effects (49%), fear of recurrence (47%), financial concerns (37%) and fatigue (37%). Cancer treatment and recurrence risk, long-term treatment effects and fear of recurrence were amongst the top concerns across the survivorship trajectory. Mean QOL was 7.3 on a scale of 0 – 10. Completed treatment patients had higher QOL score than the newly diagnosed and on treatment patients and the patients dealing with recurrence or second cancer patients. Predictors for QOL included the economic status and housing type of patients and whether patients were concerned with pain and fatigue Conclusion This study confirms that cancer survivors in Singapore face multiple challenges and had various concerns at various stages of cancer survivorship, some of which negatively affect their QOL It is critical to design patient care delivery that appropriately address the various concerns of cancer survivors in order for them to cope and improve their QOL.

scholarly journals Effects of long-term treatment with Dienogest on the quality of life and sexual function of women affected by endometriosis-associated pelvic pain

2019 ◽  
Vol Volume 12 ◽  
pp. 2371-2378 ◽  
Author(s):  
Salvatore Caruso ◽  
Marco Iraci ◽  
Stefano Cianci ◽  
Salvatore Giovanni Vitale ◽  
Valentina Fava ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Sexual Function ◽  
Pelvic Pain ◽  
Term Treatment ◽  
Long Term Treatment

scholarly journals Assessment of Quality of Life During Long-Term Treatment of Tolvaptan in Refractory Heart Failure

2014 ◽  
Vol 55 (3) ◽  
pp. 264-267 ◽  
Author(s):  
Teruhiko Imamura ◽  
Koichiro Kinugawa ◽  
Tomohito Ohtani ◽  
Yasushi Sakata ◽  
Taiki Higo ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Heart Failure ◽  
Term Treatment ◽  
Refractory Heart Failure ◽  
Long Term Treatment

What Is a Clinically Relevant Improvement in Quality of Life in Adults With ADHD?

2015 ◽  
Vol 23 (1) ◽  
pp. 65-75
Author(s):  
Yoko Tanaka ◽  
Meryl Brod ◽  
Jeannine R. Lane ◽  
Himanshu Upadhyaya
Keyword(s):  
Quality Of Life ◽  
Adult Adhd ◽  
Minimal Clinically Important Difference ◽  
Term Treatment ◽  
Short Term ◽  
Treatment Groups ◽  
Clinically Important Difference ◽  
Long Term Treatment

Objective: To estimate a minimal clinically important difference (MCID) on the adult ADHD Quality of Life (AAQoL) scale. Method: The MCID was determined from data from short-term ( N = 537) and long-term ( N = 440), placebo-controlled atomoxetine trials in adults with ADHD. For the anchor-based approach, change in clinician-rated Clinical Global Impressions–ADHD–Severity (CGI-ADHD-S) scores was used to derive MCID. For the distribution-based approach, baseline-to-endpoint mean ( SD) changes in AAQoL scores corresponding to 0.5 SD were computed. Results: The MCID was similar (approximately 8-point difference) between the short-term and the long-term treatment groups when either the anchor-based or distribution-based approach was used. Conclusion: These results suggest that approximately 8 points in the change from baseline on the AAQoL is a MCID.

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