Patient-Reported Fatigue, Functional Aspects and Quality of Life in Elderly Patients with High-Risk Myelodysplastic Syndromes. Evidence From a Large Prospective International Study.

Blood ◽  
2012 ◽  
Vol 120 (21) ◽  
pp. 3163-3163
Author(s):  
Fabio Efficace ◽  
Gianluca Gaidano ◽  
Maria Teresa Voso ◽  
Giovanni Caocci ◽  
Massimo Breccia ◽  
...  
Keyword(s):  
Quality Of Life ◽  
High Risk ◽  
Living Arrangements ◽  
Performance Status ◽  
Functional Abilities ◽  
Score Difference ◽  
Functional Aspects ◽  
High Fatigue ◽  
Fatigue Severity

Abstract Abstract 3163 Background: Fatigue can potentially compromise activities of daily living and functional abilities in patients with myelodysplastic syndromes (MDS). These patients typically also have a limited life expectancy, thus making the improvement of health-related quality of life an important goal of therapy. However, there is paucity of evidence-based data in this area. Aims: To investigate the relationships between fatigue and physical, social and emotional functions in high-risk MDS patients and to evaluate socio-demographic and clinical characteristics associated with fatigue. Methods: Newly diagnosed patients with intermediate-2 or high-risk IPSS score are recruited in an international prospective observational study. Current analysis is based on patients recruited in 37 centers. A number of socio-demographic, clinical and laboratory variables were collected prior to treatment. Also, fatigue and functional abilities were measured before treatment start. Fatigue was evaluated with the FACIT-Fatigue scale. This is a simple 13-item psychometrically robust questionnaire that assesses self-reported tiredness, weakness and difficulty conducting usual activities due to fatigue. Functional abilities and quality of life (QoL) were assessed with the EORTC QLQ-C30. Both questionnaires have undergone rigorous linguistic cross-cultural validation and were available for all patients in the appropriate language. Functional aspects investigated included: physical (PF), role (RF), emotional (EF), cognitive (CF) and social functioning (SF). These scales range from 0 to 100, with higher scores representing better outcomes. Based on previous research, 10-points were considered to be a minimally important difference (MID) for the functional and QoL scales investigated. A score difference at least equal to MID was considered as a clinically meaningful difference. The cohort was divided into four groups based on the FACIT-Fatigue scores quartiles and patients were defined as having low, low/medium, medium/high and high fatigue levels. All variables investigated were summarized according to fatigue levels. Associations between fatigue levels and functional aspects, socio-demographic characteristics (i.e., age, gender, living arrangements, education) and clinical data (i.e., performance status and IPSS risk) were investigated using Chi-square and Kruskall-Wallis tests as appropriate. Multivariate stepwise regression analysis was also performed to investigate the impact of self-reported fatigue on functional scales. Results: Analysis is based on 240 patients, of whom 77% and 23% respectively classified with intermediate-2 and high-risk IPSS score. Median age of patients was 71 years (36% female and 64% male) and 49% had at least one comorbidity. Seventy-three percent of patients had an ECOG performance status ≥1. Patients with higher levels of fatigue reported worse scores in all functional aspects investigated. PF, RF and SF scales were found to be the most compromised aspects by fatigue severity. Mean score differences, between patients reporting low versus high fatigue levels were not only statistically significant (P<.001), but also clinically meaningful being respectively: 45, 54 and 43 points for the PF, RF and SF scales. Also, higher fatigue was associated with poorer QoL outcomes. Mean scores of patients with low versus high levels of fatigue were respectively: 70 (SD 19,1) and 31.2 (SD, 22.8). Mean score difference, between patients reporting low versus high fatigue levels were also statistically significant (P<.001) and clinically meaningful being of 39 points. Multivariate analyses showed that the association between fatigue and all functional aspects and QoL was independent of age, gender, education, time from diagnosis and transfusion dependency. Investigation of possible determinants of fatigue severity revealed that this was not significantly associated with age, gender, IPSS risk category, WHO classification, comorbidity and living arrangements. Conclusion: This study suggests that fatigue is the major factor greatly compromising functional abilities and QoL in high-risk MDS patients before treatment. Successfully treating fatigue is crucial to improve functional abilities in these patients and to maximize treatment outcomes. Disclosures: No relevant conflicts of interest to declare.

Quality of life, disability, and clinical variables in amyotrophic lateral sclerosis

2021 ◽  
Author(s):  
Mariana Asmar Alencar ◽  
Izaura Monique Moura da Silva ◽  
Stéfanie Marcelle Hilário ◽  
Marcela Ferreira de Andrade Rangel ◽  
Juliana Silva Abdo ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Progressive Increase ◽  
Clinical Aspects ◽  
Strongly Correlated ◽  
Functional Aspects ◽  
Fatigue Severity ◽  
Als Patients ◽  
Lateral Sclerosis

ABSTRACT Background: Amyotrophic lateral sclerosis (ALS) is a motor neuron disease that results in a progressive increase in dysfunctions, limitations and restrictions over time, which can impact on quality of life (QoL). Therefore, expanding knowledge on QoL and possible factors associated with ALS can enable the development of actions to ensure greater wellbeing for the population. Objective: To investigate QoL in ALS and determine associations with demographic, functional and clinical aspects. Methods: Forty-five individuals with ALS (56.4±11.1 years) participated in the study. Demographic, clinical and functional aspects were investigated. Functioning and QoL were assessed using disease-specific tools (ALS Functional Ranting Scale-Revised/ALSFRS-R and ALS Assessment Questionnaire/ALSAQ-40). Fatigue was assessed using the Fatigue Severity Scale. Descriptive, correlation and stepwise multiple linear regression analyses were performed with the aid of the SPSS. Results: The mean ALSAQ-40 score was 279.0±118.3. QoL was significantly worse among women (p=0.001) and poor QoL was associated with the inability to walk (p=0.014), pain (p=0.021) and disease severity (p≤0.002). QoL was strongly correlated with the ALSFRS-R score (r=-0.82). Moderate to weak correlations were found for mobility [turning in bed (r=-0.62), locomotion (r=-0.33) and sit to stand (r=-0.40)], strength (r=-0.49), fatigue (r=0.35) and pain (r=-0.32) (p<0.03). The regression analysis revealed that the ALSFRS-R score (β=-0.76; p=0.00) and fatigue (β=0.20; p=0.04) were predictors of QoL. Conclusions: QoL was worse in women, older people, severe stages of ALS, patients with impaired mobility, those with a poorer physical performance and those who reported pain. Functional status and fatigue are predictors of QoL in ALS.

scholarly journals Quality of life and risk of feminicide in women victims of intimate partner violence in Campinas

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
M Caicedo Roa ◽  
L Gabrielle Dalaqua ◽  
P Filizola ◽  
R Cordeiro
Keyword(s):  
Quality Of Life ◽  
Domestic Violence ◽  
Intimate Partner Violence ◽  
High Risk ◽  
Women Victims ◽  
Partner Violence ◽  
Public Health Problem ◽  
Intimate Partner ◽  
Increased Risk

Abstract Introduction Violence against women is a public health problem with severe consequences. Most women in situations of domestic violence are emotionally involved and/or economically dependent of their intimate partners contributing to the perpetuation and acceptance of violence. Objectives 1) To characterize the women who join the Reference and Support Center for Women (Ceamo) in Campinas, Southeast Brazil. 2) To measure the quality of life in women victims of intimate partner violence 3) To determine the risk of feminicide. Methods The Ceamo is a public specialized service from the mayor of Campinas, it provides psychological, social and legal guidance to women in situations of gender violence. Inclusion criteria: Women attending Ceamo services, speaking Portuguese, age ≥18 years old and having experienced intimate partner violence. Measure instruments: Danger assessment Scale and WHOQOL-BREF. Results During the 11 months of the study, 78 new users were recruited. Average age 38.3 years old, mostly married/stable union, most of them with children (88%). 64% of women do not work and 36% live with the abusive partner. Prevalent types of violence suffered during by the victims in the last year were psychological n = 76, physical n = 62, moral n = 54 and sexual n = 23. The domain most affected in the assessment of quality of life was the environment (average 42% /100%) and psychological domain (42%/100%). 49% of women were classified with increased risk, 22% with severe risk and 1% with extreme risk of femicide. The questions with the most positive answers were those related to believing that the partner can kill her (77%), jealous of the partner (76%) and controlling behavior (73%), being followed/spied by the partner (67%) and threat death (65%). Conclusions The service in general receive very vulnerable women with low perception of their own quality of life, precarious material conditions and high risk of femicide. Key messages The women in domestic violence situation attended by the Ceamo service are at high risk of femicide. Service users have very low perception of their quality of life and poor social conditions.

scholarly journals Impact of monthly headache days on anxiety, depression and disability in migraine patients: results from the Spanish Atlas

2021 ◽  
Vol 11 (1) ◽  
Author(s):  
P. Irimia ◽  
M. Garrido-Cumbrera ◽  
S. Santos-Lasaosa ◽  
M. Aguirre-Vazquez ◽  
J. Correa-Fernández ◽  
...  
Keyword(s):  
Quality Of Life ◽  
High Risk ◽  
Psychiatric Comorbidity ◽  
Severe Disability ◽  
Anxiety And Depression ◽  
Headache Frequency ◽  
Positive Linear Correlation ◽  
Disabled Patients ◽  
Anxiety Depression

AbstractIdentifying highly disabled patients or at high risk of psychiatric comorbidity is crucial for migraine management. The burden of migraine increases with headache frequency, but the number of headache days (HDs) per month after which disability becomes severe or the risk of anxiety and depression is higher has not been established. Here, we estimate the number of HDs per month after which migraine is associated with higher risk of anxiety and depression, severe disability and lower quality of life. We analysed 468 migraine patients (mean age 36.8 ± 10.7; 90.2% female), of whom 38.5% had ≥ 15 HDs per month. Our results show a positive linear correlation between the number of HDs per month and the risk of anxiety (r = 0.273; p < 0.001), depression (r = 0.337; p < 0.001) and severe disability (r = 0.519; p < 0.001). The risk of anxiety is higher in patients having ≥ 3HDs per month, and those with ≥ 19HDs per month are at risk of depression. Moreover, patients suffering ≥ 10HDs per month have very severe disability. Our results suggest that migraine patients with ≥ 10HDs per month are very disabled and also that those with ≥ 3HDs per month should be screened for anxiety.

scholarly journals Maintaining musculoskeletal health using a behavioural therapy approach: a population-based randomised controlled trial (the MAmMOTH Study)

2021 ◽  
pp. annrheumdis-2020-219091 ◽  
Author(s):  
Gary J Macfarlane ◽  
Marcus Beasley ◽  
Neil Scott ◽  
Huey Chong ◽  
Paul McNamee ◽  
...  
Keyword(s):  
Quality Of Life ◽  
High Risk ◽  
Primary Outcome ◽  
Population Based ◽  
Behavioural Therapy ◽  
Short Course ◽  
Life Years ◽  
Secondary Outcomes ◽  
Randomised Controlled

ObjectiveCognitive–behavioural therapy (CBT) has been shown to be effective in the management of chronic widespread pain (CWP); we now test whether it can prevent onset among adults at high risk.MethodsA population-based randomised controlled prevention trial, with recruitment through UK general practices. A mailed screening questionnaire identified adults at high risk of CWP. Participants received either usual care (UC) or a short course of telephone CBT (tCBT). The primary outcome was CWP onset at 12 months assessed by mailed questionnaire. There were seven secondary outcomes including quality of life (EuroQol Questionnaire-five dimensions-five levels/EQ-5D-5L) used as part of a health economic assessment.Results996 participants were randomised and included in the intention-to-treat analysis of which 825 provided primary outcome data. The median age of participants was 59 years; 59% were women. At 12 months there was no difference in the onset of CWP (tCBT: 18.0% vs UC: 17.5%; OR 1.05; 95% CI 0.75 to 1.48). Participants who received tCBT were more likely to report better quality of life (EQ-5D-5L utility score mean difference 0.024 (95% CI 0.009 to 0.040)); and had 0.023 (95% CI 0.007 to 0.039) more quality-adjusted life-years at an additional cost of £42.30 (95% CI −£451.19 to £597.90), yielding an incremental cost-effectiveness ratio of £1828. Most secondary outcomes showed significant benefit for the intervention.ConclusionsA short course of tCBT did not prevent onset of CWP in adults at high risk, but improved quality of life and was cost-effective. A low-cost, short-duration intervention benefits persons at risk of CWP.Trial registration numberClinicalTrials.gov Registry (NCT02668003).

scholarly journals Prospective cohort study of surgical outcome for spinal metastases in patients aged 70 years or older

2020 ◽  
Vol 102-B (12) ◽  
pp. 1709-1716
Author(s):  
Yutaro Kanda ◽  
Kenichiro Kakutani ◽  
Yoshitada Sakai ◽  
Takashi Yurube ◽  
Shingo Miyazaki ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Performance Status ◽  
Eastern Cooperative Oncology Group ◽  
Spinal Metastases ◽  
Palliative Surgery ◽  
Advanced Age ◽  
Health State ◽  
Survival Times ◽  
The Mean

Aims With recent progress in cancer treatment, the number of advanced-age patients with spinal metastases has been increasing. It is important to clarify the influence of advanced age on outcomes following surgery for spinal metastases, especially with a focus on subjective health state values. Methods We prospectively analyzed 101 patients with spinal metastases who underwent palliative surgery from 2013 to 2016. These patients were divided into two groups based on age (< 70 years and ≥ 70 years). The Eastern Cooperative Oncology Group (ECOG) performance status (PS), Barthel index (BI), and EuroQol-5 dimension (EQ-5D) score were assessed at study enrolment and at one, three, and six months after surgery. The survival times and complications were also collected. Results In total, 65 patients were aged < 70 years (mean 59.6 years; 32 to 69) and 36 patients were aged ≥ 70 years (mean 75.9 years; 70 to 90). In both groups, the PS improved from PS3 to PS1 by spine surgery, the mean BI improved from < 60 to > 80 points, and the mean EQ-5D score improved from 0.0 to > 0.7 points. However, no significant differences were found in the improvement rates and values of the PS, BI, and EQ-5D score at any time points between the two groups. The PS, BI, and EQ-5D score improved throughout the follow-up period in approximately 90% of patients in each group. However, the improved PS, BI, and EQ-5D scores subsequently deteriorated in some patients, and the redeterioration rate of the EQ-5D was significantly higher in patients aged ≥ 70 than < 70 years (p = 0.027). Conclusion Palliative surgery for spinal metastases improved the PS, activities of daily living, and quality of life, regardless of age. However, clinicians should be aware of the higher risk of redeterioration of the quality of life in advanced-age patients. Cite this article: Bone Joint J 2020;102-B(12):1709–1716.

Self-Perception of Voice and Swallowing Handicap in Parkinson’s Disease

2021 ◽  
pp. 1-8
Author(s):  
Alice K. Silbergleit ◽  
Lonni Schultz ◽  
Kendra Hamilton ◽  
Peter A. LeWitt ◽  
Christos Sidiropoulos
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Disease Duration ◽  
Self Perception ◽  
Functional Aspects ◽  
Dysphagia Handicap Index ◽  
Relationship Of ◽  
The Relationship

Background: Hypokinetic dysarthria and dysphagia are known features of Parkinson’s disease; however, self-perception of their handicapping effects on emotional, physical, and functional aspects of quality of life over disease duration is less understood. Objective: 1) Based upon patient self-perception, to determine the relationship of the handicapping effects of dysphagia and dysphonia with time since diagnosis in individuals with Parkinson’s disease; 2)To determine if there is a relationship between voice and swallowing handicap throughout the course of Parkinson’s disease. Method: 277 subjects completed the Dysphagia Handicap Index and the Voice Handicap Index. Subjects were divided into three groups based on disease duration: 0–4 years, 5–9 years, and 10 + years. Results: Subjects in the longer duration group identified significantly greater perceptions of voice and swallowing handicap compared to the shorter duration groups. There was a significant positive correlation between the DHI and VHI. Conclusion: Self-perception of swallowing and voice handicap in Parkinson’s disease are associated with later stages of disease and progress in a linear fashion. Self-perception of voice and swallowing handicap parallel each other throughout disease progression in Parkinson’s disease. Individuals may be able to compensate for changes in voice and swallowing early while sensory perceptual feedback is intact. Results support early targeted questioning of patient self-perception of voice and swallowing handicap as identification of one problem indicates awareness of the other, thus creating an opportunity for early treatment and maintenance of swallowing and communication quality of life for as long as possible.

Randomized Controlled Trial of Azacitidine in Patients With the Myelodysplastic Syndrome: A Study of the Cancer and Leukemia Group B

2002 ◽  
Vol 20 (10) ◽  
pp. 2429-2440 ◽  
Author(s):  
Lewis R. Silverman ◽  
Erin P. Demakos ◽  
Bercedis L. Peterson ◽  
Alice B. Kornblith ◽  
Jimmie C. Holland ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Randomized Controlled Trial ◽  
High Risk ◽  
Myelodysplastic Syndrome ◽  
Supportive Care ◽  
Controlled Trial ◽  
Myelogenous Leukemia ◽  
Leukemic Transformation ◽  
Randomized Controlled

PURPOSE: Patients with high-risk myelodysplastic syndrome (MDS) have high mortality from bone marrow failure or transformation to acute leukemia. Supportive care is standard therapy. We previously reported that azacitidine (Aza C) was active in patients with high-risk MDS.PATIENTS AND METHODS: A randomized controlled trial was undertaken in 191 patients with MDS to compare Aza C (75 mg/m2/d subcutaneously for 7 days every 28 days) with supportive care. MDS was defined by French-American-British criteria. New rigorous response criteria were applied. Both arms received transfusions and antibiotics as required. Patients in the supportive care arm whose disease worsened were permitted to cross over to Aza C.RESULTS: Responses occurred in 60% of patients on the Aza C arm (7% complete response, 16% partial response, 37% improved) compared with 5% (improved) receiving supportive care (P < .001). Median time to leukemic transformation or death was 21 months for Aza C versus 13 months for supportive care (P = .007). Transformation to acute myelogenous leukemia occurred as the first event in 15% of patients on the Aza C arm and in 38% receiving supportive care (P = .001). Eliminating the confounding effect of early cross-over to Aza C, a landmark analysis after 6 months showed median survival of an additional 18 months for Aza C and 11 months for supportive care (P = .03). Quality-of-life assessment found significant major advantages in physical function, symptoms, and psychological state for patients initially randomized to Aza C.CONCLUSION: Aza C treatment results in significantly higher response rates, improved quality of life, reduced risk of leukemic transformation, and improved survival compared with supportive care. Aza C provides a new treatment option that is superior to supportive care for patients with the MDS subtypes and specific entry criteria treated in this study.

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