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.

Children and adolescents with cerebral palsy have reliable knowledge about their own condition - Self- and parent reported quality of life

2019 ◽  
Author(s):  
Melinda Fejes ◽  
Varga Beatrix ◽  
Hollody Katalin
Keyword(s):  
Quality Of Life ◽  
Cerebral Palsy ◽  
General Population ◽  
Children And Adolescents ◽  
Well Being ◽  
Home Life ◽  
European Values ◽  
Reliable Knowledge ◽  
Parent Relation

Abstract Background: to assess health related quality of life (HRQoL) of children (8–12 years) and adolescents (13–18 years) with cerebral palsy (CP) and to compare it with age-matched healthy control children from the general population (GP). Methods: prospective cohort study. HRQoL was self-reported by KIDSCREEN questionnaires. 99 families with children with CP and 237 children from the GP and their parents were enrolled. Collected data were evaluated and compared to each other across all dimensions of KIDSCREEN: European values compared to our GP’ groups, scores of children with CP and of their parents with general population groups (both children and parents); parents’ reports with childrens’,child and adolescent reports, age, sex, special features of CP on HRQoL. Results: patients with CP and their parents rated their HRQoL as poorer than their GP counterparts did, except for the parent relation/home life and social support/peers dimensions. Reports given by children and their parents were correlated. Children and adolescents had similar scores. Assessments of children and their parents were in a medium-strong positive relationship regarding psychological well-being, moods/emotions, self-perception, autonomy, parent relation/home life dimensions (0.552

scholarly journals Psycho-social impact of developmental dysplasia of the hip and of differential access to early diagnosis and treatment: A narrative study of young adults

2019 ◽  
Vol 7 ◽  
pp. 205031211983601 ◽  
Author(s):  
Tina Samantha Gambling ◽  
Andrew Long
Keyword(s):  
Quality Of Life ◽  
Young Adults ◽  
Early Diagnosis ◽  
Well Being ◽  
Developmental Dysplasia ◽  
The Impact ◽  
Dysplasia Of The Hip ◽  
Over Time ◽  
Differential Access

Objectives: Symptomatic developmental dysplasia of the hip can present in the young, active adult patient and can lead to severe pain and disability at a young age. The overall aim of the study was to deepen the understanding of the impact of developmental dysplasia of the hip on young adults’ quality of life and psycho-social well-being, focusing on how differential access to early diagnosis impacted the trajectory of the disease and treatment options. Methods: We conducted semi-structured interviews and gathered online stories from 97 participants. A narrative and thematic analysis was used to integrate the dataset producing a multi-dimensional view. Results: A narrative plot showing how events unfolded over time was identified for each participant. Two common plots were identified: Plot 1 focused around those participants who received a prompt diagnosis and were treated within 12 months of diagnosis (n = 22) and Plot 2 focused around those who experienced a late/delayed diagnosis (mean = 8 years; range = 12–364 months) (n = 75) and thus delayed treatment. Participants in Plot 2 became more debilitated over time and experienced chronic hip pain for a prolonged period before an accurate diagnosis and/or intervention was made. It was clear from the narratives when pain persists over time, participants’ quality of life and psycho-social well-being were affected. Conclusions: Developmental dysplasia of the hip is an under-recognised condition; more research is needed to develop a clear clinical picture that can be used to alert frontline health professionals to the potential for developmental dysplasia of the hip so that they can promptly diagnose patients and refer them to specialist centres. Patients can also experience a profound impact on their quality of life and psycho-social well-being. Patients actively seek information from support groups about all aspects of their condition. Further research is required to determine the long-term impact of developmental dysplasia of the hip to develop evidence-based information for clinicians and patients.

scholarly journals The Impact of the Brexit on the Living Standards and Quality of Life in Britain

2020 ◽  
Vol 16 (2) ◽  
pp. 51-60
Author(s):  
Yefim S. Khesin
Keyword(s):  
Quality Of Life ◽  
European Union ◽  
Great Britain ◽  
Social Life ◽  
Transition Period ◽  
Well Being ◽  
Living Standards ◽  
The Uk ◽  
The Impact

The Object of the Study. Living standards and quality of life of the population in Great Britain. The Subject of the Study. The Brexit. The Purpose of the Study is exposing the impact of the Brexit on the living standards and quality of life in the country. The Main Provisions of the Article. Following a June 2016 referendum on continued European Union membership in which 52% voted to leave and 48% voted to stay the UK government announced the country's withdrawal from the EC (Brexit). In March 2017 it formally began the withdrawal process. The withdrawal was delayed by deadlock in the UK parliament. Having failed to get her agreement with the EC approved, Theresa May resigned as Prime Minister in July 2019 and was succeeded by Boris Johnson, an active supporter of the Brexit. An early general election was then held on 12 December. The Conservatives won a large majority. As a result, the parliament ratified the withdrawal agreement, and the UK formally left the EU on 31 January 2020. This began a transition period that is set to end on 31 December 2020, during which the UK and EU will negotiate their future relationship. The first round of negotiations between London and Brussels began in March 2020. The author investigates the consequences of the withdrawal of Great Britain from the EC on the living standards and quality of life, economic situation, labour market, social policy of the government. in this country. It analyzes on the impact of the Brexit on the major elements of human capital: education, science, health, living conditions, ecology. It found that short-term forecasts of what would happen immediately after the Brexit referendum were too pessimistic. Nowadays it is very difficult to give an accurate estimate of the future effect of the Brexit on cost of living in Great Britain – many essential issues in the relations between the UK and the EC remain open. Besides, the coronavirus crisis and lockdown measures may cause the grave damage to growth and jobs. Much evidence shows that in the medium- and long-term leaving the European Union damage the British economy and thus reduce the UK's real per-capita income level and may adversely affect jobs and earnings, income and wealth, life expectancy, education and skills, academic research, health status, environmental quality and subjective well-being in the UK. Finally, the author analyses the impact on the economic and social life in Great Britain of different Brexit scenarios after the end of the transition period. The consequences will differ sharply depending on whether the UK does a Soft or Hard (no deal) Brexit.

scholarly journals ASSESSMENT OF PSYCHO-SOCIAL IMPACT OF ACNE AMONG YOUNG ADULTS - A CROSS SECTIONAL STUDY AT A TERTIARY CARE HOSPITAL OF RAWALPINDI

2021 ◽  
Vol 71 (4) ◽  
pp. 1171-74
Author(s):  
Zubaida Rashid ◽  
Syed Fawad Mashhadi ◽  
Imtenan Sharif ◽  
Syeda Urooj Zaidi ◽  
Saira Maroof ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Young Adults ◽  
Social Life ◽  
Well Being ◽  
Strong Positive Correlation ◽  
Care Hospital ◽  
Self Perception ◽  
Cross Sectional ◽  
The Impact

Objective: To assess the psychosocial impact of acne and to evaluate the quality of life in relation to severity of symptoms among young adults. Study Design: Cross-sectional – analytical study. Place and Duration of Study: Outpatient Department, Pak Emirates Military Hospital, Rawalpindi, from Sep 2018 to Feb 2019. Methodology: We included 300 individuals visiting the hospital and their quality of life was assessed using Acne quality of life Index questionnaire. Data was analyzed using SPSS-23. Results: Total scores were calculated for three domains of Quality of life in patients with Acne i.e. Self-perception, Emotional well-being and Social life. Out of these three domains, Social Life was most affected by acne (mean score 15.61 ± 7.37out of a total of 30) and Self-Perception was seen to be least affected (mean score 16.90 ± 8.20). There was a strong positive co-relation between the increasing severity of symptoms and impact on Self Perception (r=-0.58, p<0.01), between severity and Impact on Social life (r=-0.581, p<0.01) and between severity of symptoms and Impact on emotional well-being of the patients (r=-0.551, p<0.01). A significant difference was seen between the two genders with reference to the impact on “Social Life”, the meanscore for Males being 13.96 ± 7.55 while that for Females being 17.29 ± 6.81 (p<0.01). Conclusion: Acne has significant impact on the quality of life of patients treated by primary care physicians. The severity of symptoms had strong positive correlation with self-perception, social and emotional domains.

scholarly journals Protocol for a systematic review of instruments for the assessment of quality of life and well-being in children and adolescents with cerebral palsy

BMJ Open ◽  
2017 ◽  
Vol 7 (9) ◽  
pp. e015924 ◽  
Author(s):  
Christine Mpundu-Kaambwa ◽  
Gang Chen ◽  
Elisabeth Huynh ◽  
Remo Russo ◽  
Julie Ratcliffe
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Cerebral Palsy ◽  
Young People ◽  
Children And Adolescents ◽  
Well Being ◽  
Measurement Properties ◽  
Cochrane Library ◽  
Economic Evaluations

IntroductionCerebral palsy is the most common cause of physical disability in children and adolescents and is associated with impairments that may reduce the quality of life (QOL) of this population. Patient-reported outcome measures (PROMs) can facilitate the assessment of the effect of disease and treatment on QOL, from a patient viewpoint. The purpose of this systematic review is to identify PROMs that are used to measure QOL and subjective well-being (SWB) outcomes in young people with cerebral palsy and to evaluate the suitability of these PROMs for application in economic evaluations within this population.Methods and analysisMEDLINE, Scopus, the Cochrane Library, Web of Science Core Collection, EconLit, PsycINFO, CINAHL, EMBASE and Informit will be systematically searched from inception to date of search. Published peer-reviewed, English-language articles reporting PROMs measuring QOL or SWB outcomes in children and adolescents with cerebral palsy will be included. One reviewer will conduct the initial search and screen titles and abstracts for potentially eligible studies. The search will be performed in November 2017. To reduce the likelihood of reviewer selection bias, two other reviewers will independently screen a randomly selected subsample (10%) of the citations. Two reviewers will then retrieve full texts of potentially eligible studies and assess them against predefined inclusion criteria. The suitability of selected PROMs for use in economic evaluations of young people with cerebral palsy will be assessed using the International Society of Quality of Life Research recommended Minimum Standards and the Patient-Centered Outcomes and Comparative Effectiveness Research checklist. A narrative synthesis of extracted data will be presented including study descriptive data, PROMs measurement properties, settings in which they were applied and the valuation methods. Recommendations for practice on the selection of PROMs for use in economic evaluations of children and adolescents with cerebral palsy will be presented.Ethics and disseminationEthical approval is not required as the proposed systematic review will not use primary data. The results of this study will be widely disseminated through publication in a peer-reviewed journal and conference presentation(s).Systematic review registration numberInternational Prospective Register of Systematic Reviews number: CRD42016049746.

scholarly journals Influence of juvenile idiopathic arthritis on the quality of life of young adults in the transition period to adult rheumatologic care

2017 ◽  
Vol 2 (4) ◽  
pp. e020478
Author(s):  
Marta Dzhus
Keyword(s):  
Quality Of Life ◽  
Young Adults ◽  
Juvenile Idiopathic Arthritis ◽  
Transition Period ◽  
Disease Onset ◽  
Cross Sectional Study ◽  
Control Group ◽  
Cross Sectional ◽  
The Impact

Background Young adults with juvenile idiopathic arthritis (JIA) often have an active disease with significant functional impairment in adulthood that can affect their physical and mental functions Aim To determine the impact of JIA on quality of life (QoL) in young adults with JIA during the transition healthcare Materials and methods The cross-sectional study of 89 young adults aged 16 to 22 years with a history of JIA regardless of the presence or absence of active inflammation at the time of the survey was performed in the Oleksandrivsky Central Clinical Hospital in Kyiv, Ukraine in the period between April 2015 and February 2017. 25 age- and sex-matched controls (without rheumatic disease) were included. There was performed an evaluation of the age at disease onset, duration, JIA activity, received therapy and quality of life Results Out of 89, 37 (41,6%) patients were considered to be in remission. Juvenile idiopathic arthritis had a large impact on the physical scales of quality of life. Patients with JIA had worse (p <0.001) physical health in comparison with the control group. The pain was the most important factor affecting the quality of life in cases of juvenile idiopathic arthritis. The indices responsible for the physical (p<0.001), role (borderline significance, p=0.04) functioning, and intensity of pain (p<0.001) were decreased, compared with the control group. However, the indicators responsible for psychological function in patients with JIA did not differ from the control group. The correlation analysis revealed significant negative association between disability severity (HAQ) and physical function (r=-0,56, p<0.001), role function (r=-0,33, p<0.001), pain intensity (r=-0,60, p<0.001), general health (r=-0,40, p=0.01), vital activity (r=-0,46, p<0.001), social function (r=-0,48, p<0.001), mental health (r=-0,42, p<0.001) Conclusion In our transitional cohort of patients at the era of biological therapies, juvenile idiopathic arthritis had a larger effect on the physical than mental SF-36 subscale. The pain was the main factor influencing the quality of life

scholarly journals Quality of Life in Students From Four States of Mexico

2019 ◽  
Vol 4 (2) ◽  
pp. 45
Author(s):  
Julio Cu Farfan Lopez ◽  
Jesus Alberto Garcia Garcia ◽  
Yolanda Oliva Pena ◽  
Gabriela Moran Delgado
Keyword(s):  
Quality Of Life ◽  
Young People ◽  
Interpersonal Relationships ◽  
Personal Development ◽  
Social Inclusion ◽  
Item Analysis ◽  
Well Being ◽  
Personal Factors ◽  
High Level

The objective of this work was to know the Quality of Life of young people of four states of Mexico with very marked cultural and geographical characteristics. To achieve the objective, the GENCAT Scale was used, proposed by Verdugo, Arias and others (2009) in which it is based on 8 sub scales: Emotional well-being, Interpersonal relationships, Material well-being, Personal development, Physical well-being, Self-determination, Social inclusion and Human rights. The sample was selected from a non-probabilistic sample of 620 young people. The instrument was validated with an item analysis in which it was obtained in Cronbach's alpha of 0.92. A comparative gender study was carried out and significant differences were found with the T test in four of the sub scales. It is concluded that young people perceive two spheres in their quality of life: the first from the personal factors is perceived very low, while the second, from the social or external factors is perceived with very high values. That is, when assessing the quality of life, young people are depersonalized, but with a high level of support from their context.

scholarly journals Vision-related quality of life in adults with severe peripheral vision loss: a qualitative interview study

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Ryan Lange ◽  
Abigail Kumagai ◽  
Sara Weiss ◽  
Katherine B. Zaffke ◽  
Sherry Day ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Contrast Sensitivity ◽  
Qualitative Interviews ◽  
Well Being ◽  
Vision Impairment ◽  
Qualitative Interview Study ◽  
Patient Reported ◽  
Related Quality ◽  
The Impact

Abstract Background Existing patient-reported outcome (PRO) measures may not be relevant to the full range of functional and vision-related quality of life (VR-QOL) concerns of individuals with vision impairment due to severe peripheral field loss (PFL). Measurement of VR-QOL in severe PFL is important in order to determine the effectiveness of vision rehabilitation interventions for this population. The purpose of this study was to characterize the impact of severe PFL due to retinitis pigmentosa (RP) and glaucoma on VR-QOL as the initial phase in the development of a novel PRO measure. Methods Individuals with severe PFL due to RP or glaucoma were recruited from the Kellogg Eye Center and the Association for the Blind and Visually Impaired. Participants completed semi-structured qualitative interviews, the Impact of Vision Impairment (IVI) questionnaire and the RAND 36-Item Health Survey. Interviews were analyzed by two coders using thematic analysis. A matrix analysis was conducted to compare VR-QOL by cause of severe PFL. Sample size was determined by thematic saturation. Results The study included 37 participants (19 RP, 18 glaucoma). Median best-corrected visual acuity for those with RP and glaucoma was 20/40 and 20/27.5, while Pelli-Robson contrast sensitivity was 1.2 log contrast sensitivity (logCS) and 1.1 logCS, respectively. Median domain scores on the IVI (reading, mobility, well-being) ranged from a low of − 0.2 to a high of 0.7 logits in those with RP and from 0.5 to 1.2 logits in those with glaucoma. Qualitative interviews identified six VR-QOL themes relevant across participants with both RP and glaucoma, including activity limitations, driving, emotional well-being, reading, mobility, and social function. VR-QOL concerns were largely consistent among those with severe PFL due to RP and glaucoma. These overarching themes contained content relevant to specific challenges related to severe PFL. Conclusions There are commonly occurring VR-QOL concerns among individuals with severe PFL due to RP and glaucoma. The outlined themes will serve as the basis for development of the Low Vision Severely Constricted Peripheral Eyesight (LV-SCOPE) Questionnaire.

scholarly journals COVID-19 Pandemic and Quality of Life among Romanian Athletes

2021 ◽  
Vol 18 (8) ◽  
pp. 4065
Author(s):  
Germina-Alina Cosma ◽  
Alina Chiracu ◽  
Amalia Raluca Stepan ◽  
Marian Alexandru Cosma ◽  
Marian Costin Nanu ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Trait Anxiety ◽  
Negative Impact ◽  
Well Being ◽  
Quality Of Life Scale ◽  
Life Scale ◽  
Personality Item ◽  
The Impact ◽  
The Relationship

The aim of this study was to analyze athletes’ quality of life during the COVID-19 pandemic. The study involved 249 athletes between 15 and 35 of age, M = 21.22, SD = 5.12. The sample was composed of eight Olympic Games medalists, three European medalists, 67 international medalists, and 63 national medalists. The instruments used were: (1) COVID-19 Anxiety Scale, (2) Athlete Quality of Life Scale, (3) Impact of Pandemic on Athletes Questionnaire, and (4) International Personality Item Pool (IPIP Anxiety, Depression, and Vulnerability Scales). The results indicate significant differences in COVID-19 anxiety depending on the sport practiced, F (9239) = 3.81, p < 0.01, showing that there were significant differences between sports. The negative impact of the COVID-19 pandemic mediates the relationship between trait anxiety and the athletes’ quality of life. The percentage of mediation was 33.9%, and the indirect effect was −0.11, CI 95% (−0.18, −0.03), Z = −2.82, p < 0.01. Trait anxiety has an increasing effect on the intensity of the negative impact of the COVID-19 pandemic, 0.23, CI 95% (.10, 0.35), Z = 3.56, p < 0.01, and the negative impact of the COVID-19 pandemic has a decreasing effect on quality of life, −0.47, CI 95% (−0.67, −0.27), Z = −4.62, p < 0.01. Gender and age did not moderate the relationship between the negative impact of COVID-19 and athletes’ quality of life. The results of the study highlighted the impact that social isolation and quarantine have on athletes’ affective well-being.

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