Drug treatments and interactions, disease progression and quality of life in ALS patients

2021 ◽  
pp. 1-9
Author(s):  
Luca Diamanti ◽  
Elisa Bianchi ◽  
Klodjana Mucaj ◽  
Cristina Cereda ◽  
Silvio Garattini ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Disease Progression ◽  
Drug Treatments ◽  
Als Patients

Sleep problems affect quality of life in Parkinson's disease along disease progression

2021 ◽  
Vol 81 ◽  
pp. 307-311 ◽  
Author(s):  
Claudio Liguori ◽  
Valentino De Franco ◽  
Rocco Cerroni ◽  
Matteo Spanetta ◽  
Nicola Biagio Mercuri ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Disease Progression ◽  
Sleep Problems

scholarly journals Quality of life in primary sclerosing cholangitis: a systematic review

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Elena Marcus ◽  
Paddy Stone ◽  
Anna-Maria Krooupa ◽  
Douglas Thorburn ◽  
Bella Vivat
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Clinical Research ◽  
Disease Progression ◽  
Primary Sclerosing Cholangitis ◽  
Sclerosing Cholangitis ◽  
Small Sample ◽  
Limited Evidence ◽  
Research Studies

Abstract Background Primary sclerosing cholangitis (PSC) is a rare bile duct and liver disease which can considerably impact quality of life (QoL). As part of a project developing a measure of QoL for people with PSC, we conducted a systematic review with four review questions. The first of these questions overlaps with a recently published systematic review, so this paper reports on the last three of our initial four questions: (A) How does QoL in PSC compare with other groups?, (B) Which attributes/factors are associated with impaired QoL in PSC?, (C) Which interventions are effective in improving QoL in people with PSC?. Methods We systematically searched five databases from inception to 1 November 2020 and assessed the methodological quality of included studies using standard checklists. Results We identified 28 studies: 17 for (A), ten for (B), and nine for (C). Limited evidence was found for all review questions, with few studies included in each comparison, and small sample sizes. The limited evidence available indicated poorer QoL for people with PSC compared with healthy controls, but findings were mixed for comparisons with the general population. QoL outcomes in PSC were comparable to other chronic conditions. Itch, pain, jaundice, severity of inflammatory bowel disease, liver cirrhosis, and large-duct PSC were all associated with impaired QoL. No associations were found between QoL and PSC severity measured with surrogate markers of disease progression or one of three prognostic scoring systems. No interventions were found to improve QoL outcomes. Conclusion The limited findings from included studies suggest that markers of disease progression used in clinical trials may not reflect the experiences of people with PSC. This highlights the importance for clinical research studies to assess QoL alongside clinical and laboratory-based outcomes. A valid and responsive PSC-specific measure of QoL, to adequately capture all issues of importance to people with PSC, would therefore be helpful for clinical research studies.

A Pilot Study on Educational Workshops for Caregivers of Patients with Brain Tumors Called AGAPE Showed its Feasibility and the Maintain Caregiver’s Quality of Life Despite Patient’s Disease Progression.

2021 ◽  
Author(s):  
Héloïse Bourien ◽  
Elodie Pelotte ◽  
Aurélie Thébault ◽  
Claire Larible-Lefort ◽  
Frédérique Lebrun ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Pilot Study ◽  
Brain Tumors ◽  
Disease Progression ◽  
Adjuvant Treatment ◽  
Progressive Disease ◽  
Level Of Satisfaction ◽  
The Impact ◽  
Very High

Abstract Background Several studies have highlighted the difficulties faced by caregivers of patients with brain tumors. We created the educational workshops called AGAPE. Their aim is to explain precisely the medical aspects of brain tumors, describe resources available, and allow a moment of exchange between caregivers. Purpose To evaluate outcomes of AGAPE. Methods This was an observational uncontrolled pilot study. Feasibility was evaluated by the caregivers’ attendance of the 2 theoretical scheduled sessions and their satisfaction. Additional outcomes were the percentage of caregivers in favour of AGAPE sustainability and the impact on their quality of life according to CarGOQoL questionnaires (Caregiver Oncology Quality of Life) between baseline before the first workshop and after the last one. Results From February 2015 to March 2019, 12 three-month sessions were organized allowing 87 caregivers to participate. 84% of caregivers attended at least 2 theoretical sessions, the level of satisfaction was very high, and all caregivers were in favor of AGAPE sustainability. 36 caregivers submitted completed questionnaires at baseline and after the last workshop attended, separated by more than 2 months. The first workshop took place mostly during or after the adjuvant treatment of their loved ones. Two-thirds of their loved ones had a progressive disease after the first workshop and 21 died. Caregivers’ quality of life was stable between the first and last attended workshop. Conclusion Our study showed that AGAPE helped to maintain caregiver’s quality of life despite patient’s disease progression and its feasibility. Moreover, AGAPE may easily be run in other hospitals.

scholarly journals Scores of Health-Related Quality of Life Questionnaire Worsen Consistently in Patients of COPD: Estimating Disease Progression over 30 Years by SReFT with Individual Data Collected in SUMMIT Trial

2020 ◽  
Vol 9 (8) ◽  
pp. 2676
Author(s):  
Shinya Kawamatsu ◽  
Ryota Jin ◽  
Shogo Araki ◽  
Hideki Yoshioka ◽  
Hiromi Sato ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Disease Progression ◽  
Linear Mixed Effect Model ◽  
Life Questionnaire ◽  
Health Related Quality ◽  
Mixed Effect ◽  
Lung Functions ◽  
Related Quality ◽  
Health Related

The aim of this study was to elucidate the lifelong disease progression of chronic obstructive pulmonary disease (COPD) with biomarker changes and identify their influencing factors, by utilizing a new analysis method, Statistical Restoration of Fragmented Time-course (SReFT). Individual patient data (n = 1025) participating in the Study to Understand Mortality and MorbidITy (SUMMIT, NCT01313676), which was collected within the observational period of 4 years, were analyzed. The SReFT analysis suggested that scores of St. George’s Respiratory Questionnaire and COPD assessment test, representative scores of the health-related quality of life (HRQOL) questionnaire, increased consistently for 30 years of disease progression, which was not detected by conventional analysis with a linear mixed effect model. It was estimated by the SReFT analysis that normalized forced expiratory volume in one second for age, sex, and body size (%FEV1) reduced for the initial 10 years from the onset of the disease but thereafter remained constant. The analysis of HRQOL scores and lung functions suggested that smoking cessation slowed COPD progression by approximately half and that exacerbation accelerated it considerably. In conclusion, this retrospective study utilizing SReFT elucidated the progression of COPD over 30 years and associated quantitative changes in the HRQOL scores and lung functions.

scholarly journals Long-Term Response after 94 Cycles of Trabectedin in a Patient with Metastatic Leiomyosarcoma of the Lower Extremity

2020 ◽  
Vol 13 (1) ◽  
pp. 113-119 ◽  
Author(s):  
Magda Cordeiro ◽  
José Manuel Casanova ◽  
Joana Rodrigues ◽  
João Freitas ◽  
Ruben Fonseca ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Soft Tissue ◽  
Lower Extremity ◽  
Disease Progression ◽  
Stable Disease ◽  
Case Reports ◽  
Soft Tissue Sarcomas ◽  
Term Therapy

Leiomyosarcomas of the lower extremity are extremely rare disorders and account for 10–15% of limb soft tissue sarcomas. These tumours have poor prognosis and even in early stages, patients persist at high risk for local and distant relapse; consequently, the treatment of advanced leiomyosarcoma of the lower extremity embodies a substantial defy. We present the case of a 73-year-old man diagnosed with metastatic lower extremity leiomyosarcoma of the hallux soft tissue, and with bone, lung and lymph node metastasis. After core needle biopsy confirmation of high-grade fusocellular sarcoma, the patient underwent surgery of the primary tumour and received anthracycline-based chemotherapy. However, after a 7-month progression-free survival period, a CT revealed lung disease progression. Sequentially, the patient was treated with trabectedin (Yondelis®) at a dose of 1.5 mg/m2 resulting in complete remission of the lung metastasis and stable disease of the remaining lesions after 26 months of treatment. Afterwards, the patient started on maintenance therapy with trabectedin, resulting in long-lasting stable disease, as he was able to receive 94 cycles with very acceptable quality of life. Finally, in March 2019, the patient died of community-acquired pneumonia without objective progression disease. This clinical case reports the first patient ever treated with 94 cycles of trabectedin. Our results additionally confirm that trabectedin wields relevant oncostatic benefits with a manageable safety profile and without cumulative toxicities. Trabectedin properties enable a maintenance long-term therapy (until disease progression or unbearable toxicity), with a high impact on survival and with a preserved quality of life.

scholarly journals Features of speech and swallowing dysfunction in pre-ataxic spinocerebellar ataxia type 2

Neurology ◽  
2020 ◽  
Vol 95 (2) ◽  
pp. e194-e205
Author(s):  
Adam P. Vogel ◽  
Michelle Magee ◽  
Reidenis Torres-Vega ◽  
Jacqueline Medrano-Montero ◽  
Melissa P. Cyngler ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Disease Progression ◽  
Disease Severity ◽  
Early Stage ◽  
Speech Rate ◽  
Spinocerebellar Ataxia Type ◽  
Healthy Controls ◽  
Spinocerebellar Ataxia Type 2

ObjectiveTo determine whether objective and quantitative assessment of dysarthria and dysphagia in spinocerebellar ataxia type 2 (SCA2), specifically at pre-ataxic and early disease phases, can act as sensitive disease markers.MethodsForty-six individuals (16 with pre-ataxic SCA2, 14 with early-stage ataxic SCA2, and 16 healthy controls) were recruited in Holguin, Cuba. All participants underwent a comprehensive battery of assessments including objective acoustic analysis, clinician-derived ratings of speech function and swallowing, and quality of life assessments of swallowing.ResultsReduced speech agility manifest at the pre-ataxic stage was observed during diadochokinetic tasks, with the magnitude of speech deficit augmented in the early ataxic stage. Speech rate was slower in early-stage ataxic SCA2 compared with pre-ataxic SCA2 and healthy controls. Reduced speech agility and speech rate correlated with disease severity and time to ataxia onset, verifying that speech deficits occur prior to ataxia onset and increase in severity as the disease progresses. Whereas dysphagia was observed in both pre-ataxic and ataxic SCA2, it was not associated with swallowing-related quality of life, disease severity, or time to ataxia onset.ConclusionsSpeech and swallowing deficits appear sensitive to disease progression in early-stage SCA2, with syllabic rate a viable marker. Findings provide insight into mechanisms of disease progression in early-stage SCA2, signaling an opportunity for stratifying early-stage SCA2 and identifying salient markers of disease onset as well as outcome measures in future early-stage therapeutic studies.

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