scholarly journals Quality of Life in SMA Patients Under Treatment With Nusinersen

2021 ◽  
Vol 12 ◽  
Author(s):  
Lucas Mix ◽  
Benedikt Winter ◽  
Claudia D. Wurster ◽  
Sophia Platen ◽  
Simon Witzel ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Muscular Atrophy ◽  
Short Form ◽  
Disease Onset ◽  
Well Being ◽  
Adult Patients ◽  
Healthy Controls ◽  
Progressive Muscle Weakness ◽  
Low Levels

Background: Spinal Muscular Atrophy (SMA) is a severe neurodegenerative disease, characterized by progressive muscle weakness and atrophy. The approval of the antisense oligonucleotide (ASO) nusinersen now provides an effective pharmacological approach with the potential to slow down or stop disease progression with a potentially major impact on patients' well-being.Objective: This study evaluates quality of life (QoL) in pediatric and adult patients over the course of therapy with nusinersen.Methods: Twenty-six SMA patients treated with nusinersen were evaluated regarding global QoL (gQoL), health-related QoL (HRQoL) and depressiveness. Assessments were conducted three times over the first 6 months of treatment. Applied were different questionnaires: the Anamnestic Comparative Self-Assessment (ACSA) for gQoL, the Short Form-36 Health Survey (SF-36) for HRQoL in adult patients and the ALS Depression Inventory 12 Items (ADI-12) for depressiveness. The sample was matched with 22 healthy controls.Results: Despite severe physical restrictions, patients reported high levels of QoL and low levels of depressiveness at study entry. Early disease onset and low levels of physical functioning were associated with better gQoL and lower levels of depressiveness. A significant decrease of gQoL in patients was evident over the course of the study. Still, adult patients reported a significant increase in perceived health.Conclusions: Our study provides first insight that SMA patients experience a gQoL superior to healthy controls at start of therapy. This might indicate patients' high hopes and expectations toward treatment. gQoL returns to a level similar to that of healthy controls over the course of therapy.

scholarly journals Patients with surgically cured primary hyperparathyroidism have a reduced quality of life compared with population-based healthy sex-, age-, and season-matched controls

2011 ◽  
Vol 165 (5) ◽  
pp. 753-760 ◽  
Author(s):  
Anne Kristine Amstrup ◽  
Lars Rejnmark ◽  
Leif Mosekilde
Keyword(s):  
Quality Of Life ◽  
Primary Hyperparathyroidism ◽  
Short Form ◽  
Well Being ◽  
Population Based ◽  
Cross Sectional Study ◽  
Healthy Controls ◽  
Physical And Mental Health ◽  
Cross Sectional

ObjectivePrimary hyperparathyroidism (PHPT) is associated with feelings of fatigue and depression, as well as limitation to physical and mental functioning. These quality of life (QoL) characteristics improve after parathyroidectomy. However, whether former patients fully regain QoL compared with healthy controls is largely unknown.Design and patientsCross-sectional study. Fifty-one former PHPT patients, successfully treated by surgery (mean time since parathyroidectomy 7.4 (range 5–15) years), and 51 sex- and age-matched healthy controls.MethodsThe 36-item Short-Form Health Survey version 2 and the WHO-Five Well-being Index. The surveys included questions on overall physical and mental health, functioning, and limitation in daily life activities.ResultsFormer patients scored significantly lower compared with controls in physical functioning (P=0.01), role limitation caused by emotional problems (P=0.01), vitality (P<0.001), and general health (P=0.01). Compared with the controls, cases had a lower median (interquartile range) score of physical component summary (PCS; 54.9 (47.9–58.7) vs 49.6 (45.2–55.9),P=0.03) and mental component summary (MCS; 55.4 (49.7–58.1) vs 52.5 (44.7–55.5),P=0.04). There was no association between time since operation and PCS or MCS. Compared with controls, cases had higher body mass index (BMI; 26.0±4.7 vs 28.8±6.0 kg/m2,P<0.001) and a higher frequency of cardiovascular diseases (CVD; 41.2 vs 62.7%,P=0.03). After adjustment for differences in BMI and CVD, PCS did no longer differ between groups. However, adjustments did not change the finding of a lower MCS in cases compared with controls.ConclusionEven though QoL may improve substantially after surgery, former PHPT patients still have reduced QoL compared with healthy controls.

Quality of life of patients with Sjogren’s disease with ongoing therapy with diseasemodifying antirheumatic drugs

2020 ◽  
pp. 33-38
Author(s):  
E. Yu. Gan ◽  
L. P. Evstigneeva
Keyword(s):  
Quality Of Life ◽  
Short Form ◽  
Life Quality ◽  
Well Being ◽  
Disease Modifying Antirheumatic Drugs ◽  
Antirheumatic Drugs ◽  
Sf 36 ◽  
Disease Modifying ◽  
Sjögren’S Disease

Purpose of the study. Assessing the association between the life quality of patients with Sjogren’s Disease and ongoing therapy with various disease-modifying antirheumatic drugs.Material and methods. The study was conducted on the basis of the regional rheumatology center of the consultative diagnostic clinic of the Sverdlovsk Regional Clinical Hospital No. 1. This work is based on the results of a simultaneous study of 74 patients with primary Sjogren’s Disease (SD), distributed in three comparison groups receiving various disease-modifying antirheumatic drugs chlorambucil, methotrexate and hydroxychloroquine. The diagnosis of SD was carried out according to European-American criteria AECGC (2002) [18]. In order to analyze the quality of life of patients with SD, the 36-Item Short Form Health Survey (SF‑36) was used. Statistical data processing was carried out using Statistica 7.0 program.Results. Assessment of the quality of life of patients with SD, which is an integrative criterion of human health and well-being, revealed the absence of statistically significant differences (p > 0.05) on eight scales and two health components of the SF‑36 questionnaire in the analyzed groups that differ in the treatment of disease-modifying antirheumatic drugs chlorambucil, methotrexate and hydroxychloroquine.Conclusions. The obtained data indicate an equivalent quality of life in SD patients treated with different disease-modifying antirheumatic drugs methotrexate, chlorambucil and hydroxychloroquine, and therefore hydroxychloroquine can be considered as an alternative basic therapy in patients with SD with certain limitations and contraindications methotrexate and chlorambucil.

Quality of life and diet: A paired match study on Behçet’s disease

2022 ◽  
pp. 1-11
Author(s):  
Murat Urhan ◽  
Reci Meseri ◽  
Fahrettin Oksel
Keyword(s):  
Quality Of Life ◽  
Behçet’S Disease ◽  
Diet Quality ◽  
Behcet’S Disease ◽  
Behçet's Disease ◽  
Short Form ◽  
Activity Levels ◽  
Healthy Controls ◽  
Behcet's Disease

BACKGROUND: It has been reported that the quality of life and diet quality in individuals with rheumatological diseases are poor and may adversely affect the course of the disease. OBJECTIVE: This study aims to compare the quality of life and diet of individuals with Behçet’s Disease (BD) compared to healthy controls. METHODS: This study was planned as a case-control study, and 60 adult patients with BD were compared with age (±1) and sex paired match healthy controls concerning the quality of life and diet. Diet quality was assessed using nutrient adequacy ratio (NAR) and the mean adequacy ratio (MAR) values calculated from 24 h dietary food recall and obesity was also evaluated by various anthropometric measurements. The Short Form-36 Health Survey (SF-36) was used to evaluate the quality of life (QoL). In addition, the 24-hour physical activities were recorded to calculate physical activity levels (PAL). Data were analyzed by SPSS 25.0 via paired sample t-test and McNemar (and McNemar-Bowkers) test. p <  0.05 was deemed significant. RESULTS: The findings showed that cases were more obese (p = 0.005), less physically active (p <  0.001), had lower QoL (p <  0.01 for all subscales) and had higher Beck depression scores (p = 0.001). Controls had higher means of energy (p <  0.001), CHO% (p = 0.025), fat% (p = 0.004), and fiber (p = 0.007) intake and mean MAR value (p <  0.001). CONCLUSIONS: Compared to healthy controls, patients with BD were more obese, had lower QoL and lower diet quality. Therefore, people with BD should be evaluated for comorbid diseases and be supported by health professionals, such as dietitians and psychologists.

scholarly journals Obesity and low levels of physical activity are associated with a decreased health-related quality of life in postmenopausal women: a Wroclaw pilot study

2021 ◽  
Vol 15 (SUPPLEMENT 2) ◽  
pp. 1-8
Author(s):  
Joanna Lewandowska ◽  
Mateusz Tomaczak ◽  
Iwona Wilk ◽  
Felicja Lwow
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Waist Circumference ◽  
Postmenopausal Women ◽  
Chronic Diseases ◽  
Short Form ◽  
Increased Risk ◽  
Health Related ◽  
Low Levels

Background: Menopause is associated with numerous somatic dysfunctions, an increased risk of chronic diseases, and complications in the mental and social components of health that lower the quality of life (QoL). Obesity and related comorbidities affect over 60% of postmenopausal women in Poland. A significant role for systematic physical activity (PA) in the prevention of dysfunctions and chronic diseases, including obesity and mental disorders, has been observed previously. A low level of PA is observed across the Polish population, especially in postmenopausal women. Aim of the study: To examine QoL in postmenopausal women participating in a community health promotion program as it relates to obesity and levels of PA. Material and methods: The study sample consisted of 76 postmenopausal women (aged 65.75±5.14 years) participating in the Active Wrocław 55+ program. Before starting the program, anthropometric measurements were taken, and QoL and PA were assessed using the 36-Item Short Form Health Survey (SF-36) and the International Physical Activity Questionnaire-Short Form (IPAQ-SF), respectively. Results: Most women had a PA level above 600 MET -min/week (78.95%), and were overweight or obese (86.84%). A waist circumference over 80 cm, indicating an increased risk for metabolic syndrome, was observed in 85.89% of the participants. BMI and waist circumference negatively correlated with the level of PA (p=0.001 and p=0.017, respectively). Women exhibiting low levels of PA and higher BMIs showed a significantly lower QoL compared to those with higher PA and lower BMIs, particularly with regard to the physical domains of QoL. Conclusions: Obesity and a low level of PA are associated with a significant decline in the health-related QoL (especially in the PF and PCS domains) of postmenopausal women an urban setting.

scholarly journals Health-Related Quality of Life in Exclusively Breastfed Filipino Mother-Infant Dyads (P11-059-19)

2019 ◽  
Vol 3 (Supplement_1) ◽  
Author(s):  
Elvira Estorninos ◽  
Rachel Lawenko ◽  
Katherine Buluran ◽  
Yipu Chen ◽  
Jowena Lebumfacil ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Short Form ◽  
Gastrointestinal Symptoms ◽  
Well Being ◽  
The Philippines ◽  
Life Questionnaire ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Abstract Objectives Health-related quality of life (QoL) is an important component of overall wellbeing. The study aimed to describe the parent-perceived infant quality of life of exclusively breastfed infants along with their mother's physical and mental health in a Filipino cohort. Methods Healthy term infants, who were exclusively breastfed since birth and whose mothers had decided to exclusively breastfeed until 6 months (m) of age, were enrolled at 21–26 days of age from a single center in the Philippines. Parents completed the Infant Toddler Quality of Life Questionnaire (ITQoL) and the Short Form Health Survey (SF-36v2) (assessing maternal QoL) at enrollment and when infants were 2.5 m, 4 m, and 6 m of age. Infants’ anthropometrics were measured and parents completed gastrointestinal (GI) diaries and Infant Gastrointestinal Symptoms Questionnaire (IGSQ) throughout the study. Results Among 75 enrolled infants, 70 completed the study at age 6 m. Infant QoL mean scores were high throughout the study (range 0–100 for each concept; Table 1). Nonetheless, noticeable improvements were observed between enrollment and 2.5 m, especially in the infant-focused concept of Temperament and Moods as well as in all three parent-focused concepts (Emotional, Time, and Family Cohesion) which measure impact of child's health on parents. Between 2.5 and 6 m, the scores remained relatively stable. For maternal QoL mean scores (scores standardized to Mean = 50, SD = 10 for each scale; Table 1), noticeable improvements were observed between enrollment and 2.5 m, with Physical Health showing more pronounced improvements. The Role-Emotional scale, which measures role limitations due to emotional problems, showed the lowest scores. From enrollment to age 6 m, mean z-scores for weight-for-age, length-for-age and head circumference-for-age stably tracked WHO Growth Standards. Additionally, infant stool consistency became more formed, and incidences of spitting up/vomiting and flatulence decreased. The overall GI burden also decreased (IGSQ index score: range 13–65; 15.8 ± 3.2 at enrollment and 14.0 ± 1.2 at 6 m). Conclusions In a cohort of exclusively breastfed Filipino mother-infant dyads, parent-perceived infant health-related quality of life was high and comparable to that reported in literature1. Maternal quality of life, particularly their perceived state of emotional well-being, warrants further investigation. Funding Sources Nestec Ltd. Supporting Tables, Images and/or Graphs

scholarly journals Chronic Spontaneous Urticaria and Type 1 Diabetes Mellitus—Does Quality of Life Impairment Always Reflect Health Danger?

2020 ◽  
Vol 9 (8) ◽  
pp. 2505
Author(s):  
Zenon Brzoza ◽  
Katarzyna Nabrdalik ◽  
Lukasz Moos ◽  
Hanna Kwiendacz ◽  
Karina Badura-Brzoza ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Diabetes Mellitus ◽  
Social Functioning ◽  
Short Form ◽  
Well Being ◽  
Chronic Spontaneous Urticaria ◽  
The Mean ◽  
Being There

Background and aims: Chronic spontaneous urticaria (CSU) and diabetes mellitus type 1 (T1DM) may compromise the quality of life (QoL). We decided to compare the QoL of T1DM patients to those suffering from CSU. Materials and methods: Sixty-six patients with well-controlled T1DM (male 52%) in the mean age of (SD) 36.3 (11.09) years and 51 patients with CSU (male 33%) in the mean age of (SD) 35.8 (8.53) years were enrolled in this observational study. All the participants completed a Short-Form 36 (SF-36) QoL. Results: The QoL related to social functioning was significantly worse among CSU patients. There were differences related to gender found in the group of patients with T1DM—where men tended to declare a better quality of life than women (p = 0.015)—especially in the area of energy/fatigue and pain. It appeared that due to physical and emotional problems occurring in married patients, the QoL is lower in T1DM group in comparison to the CSU one. Conclusions: The patients with CSU presented significantly worse social functioning compared to the ones with T1DM. This fact proves the QoL impairment level is not always related to the level of health danger. The differences in the QoL related to gender and marital status found among T1DM patients point to the necessity for further exploration in a larger group of patients. Due to the fact that optimal disease management should ensure patient’s good emotional well-being, there is a need for additional psychological and social care for patients from those two groups.

scholarly journals Psychosocial factors, disability and quality of life in chronic shoulder pain patients with central sensitization

2020 ◽  
Vol 8 (2) ◽  
Author(s):  
Prachita P. Walankar ◽  
Vrushali P. Panhale ◽  
Manali M. Patil
Keyword(s):  
Quality Of Life ◽  
Shoulder Pain ◽  
Central Sensitization ◽  
Pain Catastrophizing ◽  
Short Form ◽  
Well Being ◽  
Sf 36 ◽  
Pain Patients ◽  
Chronic Shoulder Pain

Chronic shoulder pain is a complex and multidimensional phenomenon with multiple causative factors involved in its perpetuation. Alteration of central nervous system processing along with the central sensitization is a predominant feature in chronic pain. Reduction in physical function has an impact on the psychological well-being of an individual. The aim of the study was to compare pain, kinesiophobia, catastrophizing, disability and quality of life in chronic shoulder pain patients with and without central sensitization. Eighty chronic unilateral shoulder pain patients in the age group of 40 to 60 years were recruited. Of them, 38 were chronic shoulder pain with central sensitization and 42 without central sensitization, classified on the basis of central sensitization inventory. Pain catastrophizing was measured using the pain catastrophizing scale, kinesiophobia using Tampa scale of kinesiophobia, disability using Shoulder pain and disability index and quality of life using 36-Item Short Form Health Survey questionnaire was evaluated in both the groups. Increased pain catastrophizing (p=0.000), kinesiophobia (p=0.000) and disability (p=0.000) was observed in centrally sensitized chronic shoulder pain patients. Also, physical component summary (p=0.000) and mental component summary (p=0.000) of SF-36 quality of life were reduced in chronic shoulder pain with central sensitization as compared to without central sensitization. Hence, these components should be included during assessment which will provide a holistic and multimodal approach towards the understanding, planning and management of chronic shoulder pain patients.

scholarly journals Quality of Life After Pulmonary Rehabilitation: Assessing Change Using Quantitative and Qualitative Methods

2000 ◽  
Vol 80 (10) ◽  
pp. 986-995 ◽  
Author(s):  
Pat G Camp ◽  
Jessica Appleton ◽  
W Darlene Reid
Keyword(s):  
Quality Of Life ◽  
Qualitative Research ◽  
Qualitative Methods ◽  
Physical Function ◽  
Pulmonary Rehabilitation ◽  
Short Form ◽  
Well Being ◽  
Sf 36 ◽  
Quantitative And Qualitative Methods

Abstract Background and Purpose. The purpose of this study was to use quantitative and qualitative research methods to evaluate quality-of-life (QOL) changes in patients with chronic obstructive pulmonary disease (COPD) after pulmonary rehabilitation. Subjects. Twenty-nine individuals with COPD (18 women and 11 men), with a mean age of 69 years (SD=8.6, range=53–92), participated. Methods. Subjects were assessed before and after a 5-week control phase and after a 5-week rehabilitation phase using the Chronic Respiratory Questionnaire (CRQ), the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36), and spirometry. Our qualitative research was based on a subsample of 7 subjects who were interviewed after pulmonary rehabilitation. Results. Pulmonary rehabilitation improved QOL, as demonstrated by increases of 22% and 14% in the physical function categories of the CRQ and the SF-36, respectively, and by an increase of 10% in the CRQ's emotional function category. The qualitative data indicated how pulmonary rehabilitation influenced QOL. Conclusion and Discussion. The use of both quantitative and qualitative methods illustrated the nature of improvement in QOL after pulmonary rehabilitation. Improved physical function, less dyspnea, and a heightened sense of control over the subjects' COPD resulted in increased confidence and improved emotional well-being.

scholarly journals Health-Related Quality of Life Among Long-Term Rectal Cancer Survivors With an Ostomy: Manifestations by Sex

2009 ◽  
Vol 27 (28) ◽  
pp. 4664-4670 ◽  
Author(s):  
Robert S. Krouse ◽  
Lisa J. Herrinton ◽  
Marcia Grant ◽  
Christopher S. Wendel ◽  
Sylvan B. Green ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Rectal Cancer ◽  
Short Form ◽  
Well Being ◽  
Health Related Quality ◽  
Cross Sectional ◽  
Related Quality ◽  
Health Related

Purpose Intestinal stomas can pose significant challenges for long-term (≥ 5 years) rectal cancer (RC) survivors. Specifying common challenges and sociodemographic or clinical differences will further the development of tailored interventions to improve health-related quality of life (HRQOL). Patients and Methods This was a matched cross-sectional study of long-term RC survivors conducted in three Kaiser Permanente regions. The mailed questionnaire included the modified City of Hope Quality of Life-Ostomy (mCOH-QOL-Ostomy) and Medical Outcomes Study 36-Item Short-Form Health Survey, version 2 (SF-36v2). Groups surveyed were permanent ostomates (cases) and those who did not require an ostomy (controls). RC survivors were matched on sex, age, and time since diagnosis. Comparisons between groups used regression analysis with adjustment for age, comorbidity score, history of radiation therapy, income, and work status. Results Response rate was 54% (491 of 909). Cases and controls had similar demographic characteristics. On the basis of the mCOH-QOL-Ostomy, both male and female cases had significantly worse social well-being compared with controls, while only female cases reported significantly worse overall HRQOL and psychological well-being. For younger females (< age 75 years), ostomy had a greater impact on physical well-being compared with older females. Based on the SF-36v2, statistically significant and meaningful differences between female cases and controls were observed for seven of the eight scales and on the physical and mental component summary scores. Conclusion Men and women report a different profile of challenges, suggesting the need for targeted or sex-specific interventions to improve HRQOL in this population. This may include focus on physical HRQOL for female ostomy survivors younger than age 75.

Age of First Exposure to Collision Sports Does Not Affect Quality of Life Outcomes in Community Rugby Players

Neurology ◽  
2020 ◽  
Vol 95 (20 Supplement 1) ◽  
pp. S11.2-S11
Author(s):  
Katie Hunzinger ◽  
Katelyn Costantini ◽  
Charles Buz Swanik ◽  
Thomas A. Buckley
Keyword(s):  
Quality Of Life ◽  
Satisfaction With Life ◽  
Short Form ◽  
Later Life ◽  
Well Being ◽  
Psychological Status ◽  
Online Questionnaire ◽  
Assess Quality ◽  
Rugby Players

ObjectiveTo determine the relationship between exposure to repetitive head impacts (RHI) through collision sports prior to the age of 12 and quality of life measures in community rugby players.BackgroundIt is suggested that RHI incurred before age 12 may be associated with later life neurologic impairments. However, research on age of first exposure (AFE) to collision sports and psychological outcomes has not be explored in rugby, a sport which participants often continue in community settings beyond college.Design/MethodsIndividuals over 18 years old who currently or previously played contact rugby completed an online questionnaire. To assess quality of life and psychological status, participants completed the Brief-Symptoms Inventory 18 (BSI-18), Short Form 12 (SF-12), and Satisfaction with Life Survey (SWLS). Participants were dichotomized into AFE to collision sports (12); AFE to rugby was not used since most participated in other collision sports prior to rugby. Data were not normally distributed; therefore, a Mann-Whitney U test was performed to compare outcomes between AFE groups.Results1,037 rugby players (31.6 + 11.3 years, 59.1% male) participated in this study. There were no significant differences between AFE 12 groups on all outcomes: BSI-18 Somatization (U = 97,286, p = 0.307), BSI-18 Depression (U = 100,267, p = 0.778), BSI-18 Anxiety (U = 98,851, p = 0.531), SF-12 Physical (U = 94,413, p = 0.241), SF-12 Mental (U = 96,517, p = 0.512), SWLS (U = 98,866, p = 0.537). Mean scores for all outcomes were: BSI-18 Somatization (2.33 + 2.99), BSI-18 Depression (4.20 + 4.91), BSI-18 Anxiety (3.32 + 3.75), SF-12 Physical (52.40 + 7.25), SF-12 Mental (46.20 + 11.45), SWLS (24.86 + 6.31).ConclusionsConsistent with recent cohort studies, there was no observed difference on three common measures of psychological well-being and quality of life in rugby players based upon AFE to collision sports. However, later life potential consequences of RHI in rugby players remains to be elucidated.

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