scholarly journals The comparison between health literacy and quality of life in three groups of mothers with cerebral palsy, Autism and intellectual impairments

2018 ◽  
Vol 2 (4) ◽  
pp. 245-254 ◽  
Author(s):  
Anahita Khodabakhshi-Koolaee ◽  
Hanieh Rostami Goharni ◽  
Atuosa Kafashpour Marandi ◽  
◽  
◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cerebral Palsy ◽  
Health Literacy

scholarly journals Determinants of participation and quality of life of young adults with cerebral palsy: longitudinal approach and comparison with the general population – SPARCLE 3 study protocol

BMC Neurology ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Catherine Arnaud ◽  
Carine Duffaut ◽  
Jérôme Fauconnier ◽  
Silke Schmidt ◽  
Kate Himmelmann ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Young Adults ◽  
Cerebral Palsy ◽  
Young People ◽  
General Population ◽  
Transition Period ◽  
Well Being ◽  
Personal Factors ◽  
The Impact

Abstract Background Effective inclusion in society for young people with disabilities is increasingly seen as generating opportunities for self-development, and improving well-being. However, significant barriers remain in the vast majority of activities meaningful for young adults. Research argues that various personal (disabilities, health) and environmental (access to the resources needed, accessible environment, discrimination, lack of personal economic independence) factors contribute to limited participation. However, previous studies conducted in young people with cerebral palsy (CP) mainly investigated the transition period to adulthood, and did not fully consider the whole range of impairment severity profiles or environmental barriers. In this study, we will use the follow-up of the SPARCLE cohort and a comparison group from the general population (1) to investigate the impact of the environment on participation and quality of life of young adults with CP, (2) to determine predictors of a successful young adulthood in educational, professional, health and social fields, (3) to compare quality of life and frequency of participation in social, work and recreational activities with the general population, (4) to document on participation and quality of life in those with severe disabilities. Methods The SPARCLE3 study has a combined longitudinal and cross-sectional design. Young adults with CP aged 22 to 27 years in 6 European regions previously enrolled in the SPARCLE cohort or newly recruited will be invited to self-complete a comprehensive set of questionnaires exploring participation (daily life and discretionary activities), health-related quality of life, body function, personal factors (health, personal resources), and contextual factors (availability of needed environmental items, family environment, services provision) during home visits supervised by trained researchers. Proxy-reports or adapted questionnaires will be used for those with the most severe impairments. The recruitment of a large group from the general population (online survey) will enable to identify life areas where the discrepancies between young people with CP and their able-bodied peers are the most significant. Discussion This study will help identify to what extent disabilities and barriers in environment negatively affect participation and quality of life, and how previous valued experiences during childhood or adolescence might modulate these effects.

scholarly journals AB0300 LUPUS DISEASE ACTIVITY CORRELATES WITH QUALITY OF LIFE BUT NOT WITH HEALTH LITERACY STATUS

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 1176.2-1176
Author(s):  
E. Eraslan ◽  
R. Bilici Salman ◽  
H. Satiş ◽  
A. Avanoglu Guler ◽  
H. Karadeniz ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Literacy ◽  
Disease Activity ◽  
Lupus Erythematosus ◽  
Patient Reported Outcome ◽  
The Body ◽  
Limited Health Literacy ◽  
Patient Reported ◽  
Limited Health

Background:Systemic lupus erythematosus (SLE) is a chronic autoimmune disease of unknown etiology that can affect any organ of the body. SLE is associated with adverse effects on both health and non-health-related quality of life (HRQOL and non-HRQOL). Lupus PRO is a patient reported outcome measure that has been validated in many languages. It has 44 items that cover both HRQOL and non-HRQOL (1). Health literacy is defined as the degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions. Multiple studies indicate that people with limited health literacy have worse health status and higher rates of hospitalization (2).Objectives:We aimed to evaluate the relationship between the LLDAS (Lupus Low Disease Activity State) criteria and the Lupus PRO test, as well as the health literacy status of lupus patients.Methods:83 SLE patients (94% women) were included in the study. We performed Lupus PRO and the European Health Literacy Survey tests during the routine follow-up visits of lupus patients to our rheumatology outpatient clinic and admissions to rheumatology inpatient clinic. Available clinical data on medical records were obtained, physician global assessments (PGA) were recorded by the attending physician.Results:LLDAS criteria strongly and inversely correlated with the total score, as well as the mood subunit of the Lupus PRO. Similarly, it also significantly inversely correlated with the body appearence and goals subunits. Health literacy status of the patients did not correlate with their LLDAS scores, ie their disease activities.Conclusion:Our results suggest that lupus disease activity, assessed by LLDAS criteria, significantly correlates with measures of quality of life, spesicifically Lupus PRO test, but not with health literacy status. Further studies are needed to evaluate if health literacy is related with damage, hospitalization or mortality associated with lupus.References:[1]Jolly M, Pickard AS, Block JA, Kumar RB, Mikolaitis RA, Wilke CT, et al., editors. Disease-specific patient reported outcome tools for systemic lupus erythematosus. Seminars in arthritis and rheumatism; 2012: Elsevier.[2]Paasche-Orlow MK, Parker RM, Gazmararian JA, Nielsen-Bohlman LT, Rudd RR. The prevalence of limited health literacy. Journal of general internal medicine. 2005;20(2):175-84.Disclosure of Interests:None declared

A Cross-Sectional Study to Evaluate the Quality of Life of Caregivers for Children with Cerebral Palsy in Saudi Arabia, Jeddah

2021 ◽  
Author(s):  
Alanoud Akram Aman ◽  
Bashaer Baharoon ◽  
Haifa Jamal Idrees ◽  
Ahad Mohammedyusuf Taj ◽  
Bassmah Ali Alzahrani ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Saudi Arabia ◽  
Cerebral Palsy ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Cross Sectional ◽  
Children With Cerebral Palsy

scholarly journals The relationship between quality of life and functioning for children with cerebral palsy

2008 ◽  
Vol 50 (3) ◽  
pp. 199-203 ◽  
Author(s):  
A Shelly ◽  
E Davis ◽  
E Waters ◽  
A Mackinnon ◽  
D Reddihough ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cerebral Palsy ◽  
Children With Cerebral Palsy ◽  
The Relationship

scholarly journals Health-related quality of life and mental health of adolescents with cerebral palsy in rural Bangladesh

PLoS ONE ◽  
2019 ◽  
Vol 14 (6) ◽  
pp. e0217675 ◽  
Author(s):  
Rosalie Power ◽  
Mohammad Muhit ◽  
Eamin Heanoy ◽  
Tasneem Karim ◽  
Nadia Badawi ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Cerebral Palsy ◽  
Health Related Quality ◽  
Rural Bangladesh ◽  
Related Quality ◽  
Health Related
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