Daily Functioning and Quality of Life in Patients with Sjögren–Larsson Syndrome

2019 ◽  
Vol 50 (02) ◽  
pp. 089-095
Author(s):  
Imelda de Groot ◽  
Marjo van Gerven ◽  
Michèl Willemsen ◽  
Pippa Staps
Keyword(s):  
Quality Of Life ◽  
Daily Functioning ◽  
Enzyme Defect ◽  
Complex Disorder ◽  
Swallowing Problems ◽  
Spastic Paresis ◽  
Age Range ◽  
Reduced Mobility ◽  
Larsson Syndrome

Aim Sjögren–Larsson syndrome (SLS) is an autosomal recessively inherited neurometabolic disease caused by an enzyme defect in lipid metabolism. Patients suffer from intellectual disability, bilateral spastic paresis, ichthyosis, visual impairment, and photophobia. Knowledge about the meaning of having SLS in daily life is lacking. Methods Sixteen parents or caregivers of patients with SLS were asked to fill out online questionnaires about daily functioning, quality of life, feeding and swallowing problems, skin treatment, female hormonal status, and greatest problems. Results Questionnaires were filled out by parents or caregivers of six children and 10 adult patients, age range 11 to 58 years. The median quality of life score was 73 (range: 26–100). Most often reported problems were itchy skin, reduced mobility, and dependency. Feeding and swallowing problems were reported in 75% of the patients. Mood problems were rarely mentioned. Discussion Despite the large disruptions of daily functioning, patients with SLS are according to their parents generally content with their quality of life and participation. There was a broad range in reported problems. We found it very useful to systematically ask parents about their children's feelings and needs, to better understand the meaning of living with a complex disorder like SLS.

Impact of Voice and Swallowing Problems in the Elderly

2008 ◽  
Vol 139 (2_suppl) ◽  
pp. P50-P50
Author(s):  
Richard Turley ◽  
Seth M Cohen
Keyword(s):  
Quality Of Life ◽  
Treatment Options ◽  
The Elderly ◽  
T Test ◽  
Barriers To Treatment ◽  
Continuous Variables ◽  
Spearman Correlation ◽  
Cross Sectional ◽  
Swallowing Problems

Objective 1) Evaluate the prevalence of and quality of life impact of voice and swallowing problems in the elderly. 2) Determine treatment trends and barriers to treatment. Methods Cross-sectional study of independent living residents in 2 retirement communities. Main outcome measures include prevalence of dysphonia and dysphagia, Voice Related Quality of Life (VRQOL), 7-point Likert scale of dysphagia severity, Center for Epidemiologic Studies Depression (CES-D) scale, and barriers to treatment. Relationship between continuous variables were analyzed with Spearman correlation and between categorical and continuous variables with a t-test. Results 248 residents responded, with a mean age of 82.4 years. 19.8% had dysphonia, 13.7% dysphagia, and 6% both. Respondents with more severe swallowing difficulty had greater impairment on the VRQOL (p = 0.04, Spearman correlation = −0.4). Respondents with both dysphonia and dysphagia had greater depression scores than those with neither symptom (mean CES-D score 15.5 versus 9.9, p = 0.008, t-test). While 75% of respondents with dysphonia were interested in treatment, only 20.4% and 2.1% had sought treatment for dysphonia and dysphagia, respectively. Being unaware of treatment options, and viewing voice and swallowing trouble as a normal part of aging, were the two most common reasons for not seeking treatment. Conclusions Voice and swallowing problems are common in the elderly but they are not realizing potential treatment benefits. Improved health care services for voice and swallowing problems in the elderly are essential.

Psychosocial Consequences among Elderly Living In Institutional and Non-Institutional Settings

2016 ◽  
Vol 4 (1) ◽  
Author(s):  
Nagesh Jamwal
Keyword(s):  
Quality Of Life ◽  
Elderly People ◽  
Research Work ◽  
The Elderly ◽  
Institutional Settings ◽  
Elderly Males ◽  
Psychosocial Consequences ◽  
Age Range ◽  
Elderly Living

Background – Elderly people face many psychological, physical and socio economic morbidities due to ageing. Institutional settings have been opened for those elderly people who are neither able to take care of themselves nor is there any person to look after them. Objectives- The present research work was conducted to study the quality of life, loneliness and psychological distress of the elderly males and females living in institutions and non-institutional settings in urban Jammu district. Methods –The study was conducted using purposive sampling on 40 elderly living in institutional settings and 40 elderly living in non- institutional settings in the age range of 60-80 years. Tools used – GHQ  by Gautam, Nuhawan and Kamal ,UCLA loneliness scale(Russell, 1996)  and WHO (QOL-BREF, 1998),  was used. Results – The results revealed significant differences on loneliness and quality of life between those living in institutional settings and those living with their families.

scholarly journals Treatment of Chemotherapy-induced Nausea in Cancer Patients

2010 ◽  
Vol 06 (02) ◽  
pp. 14
Author(s):  
Julie L Ryan ◽  
Keyword(s):  
Quality Of Life ◽  
Cancer Patients ◽  
Metabolic Disorders ◽  
Nausea And Vomiting ◽  
Daily Functioning ◽  
Evidence Based ◽  
Nutritional Depletion

For over 30 years, chemotherapy-induced nausea and vomiting have been the most severe and troublesome symptoms for cancer patients receiving chemotherapy. Unresolved chemotherapy-induced nausea and vomiting can lead to metabolic disorders, dehydration, nutritional depletion and oesophageal tears, and can reduce the daily functioning and quality of life of and interfere with treatment schedules. Despite the widespread use of antiemetics, chemotherapy-induced nausea continues to be problematic. Unlike vomiting, nausea is a subjective and unobservable phenomenon, making it extremely difficult to accurately assess and treat. Current research suggests that management of chemotherapy-induced nausea should focus on treating the symptoms before they occur rather than after they develop. This article highlights evidence-based interventions for the treatment of chemotherapy-related nausea.

Pain management

2020 ◽  
pp. 629-633
Author(s):  
Marie Fallon
Keyword(s):  
Quality Of Life ◽  
Pain Management ◽  
Pain Relief ◽  
Adverse Effects ◽  
Cancer Pain ◽  
Daily Functioning ◽  
Opioid Analgesia ◽  
Patients With Cancer ◽  
Good Pain Relief

Pain occurs in more than 50% of patients with advanced disease, interferes with daily functioning and quality of life, and is very often undertreated. Patients can find it difficult to articulate the character of their pains, but it is important to determine whether it is somatic, neuropathic, or visceral since this has important implications for management. For most patients with cancer pain, a three-step approach combining simple or opioid analgesia (depending on severity) along with an adjuvant analgesic (depending on cause) will result in good pain relief, but the challenge is to achieve good pain relief without unacceptable adverse effects.

scholarly journals M51. EFFICACY OF “PRAGMACOM TRAINING” IN SCHIZOPHRENIA: A RCT ON A NOVEL PRAGMATIC INTERVENTION

2020 ◽  
Vol 46 (Supplement_1) ◽  
pp. S153-S153
Author(s):  
Giulia Agostoni ◽  
Elisabetta Tonini ◽  
Mariachiara Buonocore ◽  
Margherita Bechi ◽  
Maria Paola Silvestri ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Executive Functions ◽  
Controlled Trial ◽  
Effect Sizes ◽  
Daily Functioning ◽  
Control Group ◽  
Abstract Thinking ◽  
Metaphor Comprehension ◽  
Quality Of Life Scale

Abstract Background A pragmatic disruption is observed in several clinical conditions and especially in schizophrenia. It is estimated that over 75% of patients affected by schizophrenia present a pervasive and wide impairment of pragmatic abilities, encompassing both comprehension and production abilities, thus confirming the hypothesis of a wide Pragmatic Language Disorder in schizophrenia. More specifically, the comprehension of figurative languages, such as metaphors, idioms, and irony, is the most compromised domain in schizophrenia. Poor pragmatics has a relevant impact on daily functioning, by contributing to social isolation and lower quality of life. Only few pragmatic treatments have been developed and tested in schizophrenia, focusing only on specific pragmatic features and without using a Randomized Controlled Trial (RCT) design. This study aimed at investigating the efficacy of PragmaCom Training (PT), a novel 12-weeks intervention specifically developed to enhance pragmatics in schizophrenia. Methods 30 patients with schizophrenia, according to DSM 5, were randomly assigned to PT to an active control group (ACG). All patients were assessed for global pragmatics with the Assessment of Pragmatic Abilities and Cognitive Substrates test, APACS), metaphor comprehension (Physical and Mental Metaphors task, PMM), executive functions (Brief Assessment of Cognition in Schizophrenia, Tower of London score, BACS), abstract thinking (Positive and Negative Syndrome Scale for Schizophrenia, N5 score, PANSS), and daily functioning (Quality of Life Scale, QLS). To quantify the magnitude of changes after the PT, effect sizes were estimated using Cohen’s d (Cohen, 1988) for APACS, PMM, PANSS N5 Score, and QLS only in PT Group. The effect of PT in enhancing pragmatic abilities, the abstract thinking and daily functioning was tested between groups by means of several ANCOVA, entering post-training measures as dependent variables, measures at the baseline and executive functions as covariates, and treatment (PT vs ACG) as grouping variables. Results Patients treated with PT showed small to medium-large effect-sizes in global pragmatics (0.25), metaphors comprehension (0.72), functioning (0.23), and abstract thinking (-0.18). ANCOVAs revealed a significant effect of PT in enhancing global pragmatic abilities (F=5.4, p=.03), metaphor comprehension (F=8.94, p=.007) and abstract thinking (F=8.1, p=.01). No significant effect was found for functioning. Discussion This is the first study using a RCT design to test the efficacy of a pragmatic training. PT is a novel training specifically developed to target the pragmatic impairments that characterize schizophrenia. This study confirms the efficacy of PT in improving multiple domains, encompassing global pragmatics, the comprehension of figurative language, and abstract thinking in schizophrenia. Impact on functioning is also expected. However, in line with literature, it is likely to occur at later time points, since it requires the chance to apply the enhanced abilities in ecological contexts.

scholarly journals Impact of epileptic patient's knowledge level on their quality of life

2018 ◽  
Vol 9 (2) ◽  
pp. 31
Author(s):  
Sahar A. Abd-El Mohsen ◽  
Nagwa M. Ahmed
Keyword(s):  
Quality Of Life ◽  
Management Program ◽  
University Hospital ◽  
Patient Interview ◽  
Knowledge Questionnaire ◽  
Hospital Patients ◽  
Patients With Epilepsy ◽  
Age Range ◽  
The Impact

Background and objective: Inadequate epileptic patient’s knowledge regarding their disorder may affect the quality of their life. The aim of the study was to determine the impact of epileptic patient’s knowledge on the quality of their life.Methods: Research design: a descriptive study was conducted in the period from February to April 2017 to determine the impact of epileptic patient's knowledge on the quality of their life. Setting; this study was carried out in the neurology department and neurology outpatient clinic of Assiut Neurology University Hospital. Patients; a sample of sixty epileptic male and female patients, with an age range between 18 to 65 years was included. Two tools were used: Tool I: Structured patient interview questionnaire sheet and it included two parts: Part one: Sociodemographic data about of the studied patients, Part two: knowledge assessment regarding their disorder using Epilepsy Patient Knowledge Questionnaire (EPKQ). Tool II: Quality of Life in Epilepsy (QOLIE 31).Results: The highest percentage of the studied sample was male, married, their mean age was 38.97 ± 11.21, and their duration of epilepsy was 16.82 ± 9.7. 58.3% were having satisfactory level of knowledge regarding their condition.Conclusions and recommendation: The present study concluded that: epileptic patients are lacking knowledge regarding their condition (58.3% vs. 41.7%). There was No significant correlation between total QOL and score of knowledge. Recommendation: A self-management program is needed for patients with epilepsy in order to improve their knowledge regarding their disease. 

Quality of Life in Paediatric Migraine: Characterization of Age-Related Effects Using PedsQL 4.0

Cephalalgia ◽  
2004 ◽  
Vol 24 (2) ◽  
pp. 120-127 ◽  
Author(s):  
SW Powers ◽  
SR Patton ◽  
KA Hommel ◽  
AD Hershey
Keyword(s):  
Quality Of Life ◽  
Young Children ◽  
Parent Report ◽  
Clinic Visit ◽  
Older Children ◽  
Quality Of Life Inventory ◽  
Age Related ◽  
Pedsql 4.0 ◽  
Age Range

The aim of this study was to measure quality of life (QOL) across a broad age range of paediatric migraine patients. Children and adolescents ( n = 686) with migraine completed the Pediatric Quality of Life Inventory, version 4.0 (PedsQL 4.0) and a standardized headache assessment at an initial clinic visit. The sample size for each PedsQL age group was: age 2-4 = 21, age 5-7 = 86, age 8-12 = 298, and age 13-18 = 281. Mean total score was 72.7 ± 14.8, significantly less than healthy norms ( P < 0.01). Teens reported lower School Functioning than older and young children ( P < 0.05) and young children reported lower Social Functioning than older children and teens ( P < 0.001). A moderate relation was found between self and parent report. Age-related effects on QOL have implications for the evaluation and management of migraine in paediatric practice. The self and parent report forms of the PedsQL can be used in a practice setting.

Explorative Evaluation of the Impact of Premenstrual Disorder on Daily Functioning and Quality of Life

2010 ◽  
Vol 3 (2) ◽  
pp. 125-132 ◽  
Author(s):  
Lothar A.J. Heinemann ◽  
Thai Do Minh ◽  
Anna Filonenko ◽  
Kerstin Uhl-Hochgräber
Keyword(s):  
Quality Of Life ◽  
Daily Functioning ◽  
Premenstrual Disorder ◽  
The Impact

scholarly journals Physical Activity Patterns and Quality of Life of Overweight Boys: A Preliminary Study

2012 ◽  
Vol 22 (1) ◽  
pp. 31-37 ◽  
Author(s):  
Chung-Ying Lin ◽  
Chia-Ting Su ◽  
Hui-lng Ma
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Standard Deviation ◽  
Activity Patterns ◽  
Occupational Therapists ◽  
Normal Weight ◽  
Age Range ◽  
The Relationship ◽  
Pearson Correlations

Objective We compared the physical activity (PA) patterns and the quality of life (QoL) between overweight and normal-weight boys, and examined the relationship between PA and QoL of overweight boys. Methods Eighteen overweight boys (age range: 8–10 years, mean ± standard deviation: 9.36 ± 0.82 years) and 18 age-matched, normal-weight counterparts (age range: 8–10 years, mean ± standard deviation: 9.01 ± 0.65 years) participated in this study. All participants were in the 3rd or 4th grade. Each boy completed a QoL questionnaire and wore an accelerometer on his waist for a week to measure his PA during that period. Independent t tests were used to examine the differences in QoL and PA between the overweight and normal-weight boys. Paired t tests were used to test the differences in PA between weekdays and weekend days for each group. Finally, Pearson correlations were used to analyze the relationships between PA and QoL in overweight boys. Results Overweight boys reported a significantly lower QoL, and participated in significantly less PA on weekends than did normal-weight boys. A moderate and marginally significant correlation was found between PA on weekends and QoL in overweight boys. Conclusion Our findings suggest the importance of increasing weekend PA for overweight boys. Occupational therapists should encourage overweight boys to engage in PA that the boys are interested in on weekends, and conduct a PA program for overweight boys.

Sign in / Sign up

Export Citation Format

Share Document