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 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.

Validity and Reliability of the German Version of the CP QOL-Child and CP QOL-Teen Questionnaire

2021 ◽  
Author(s):  
Manuel Maier ◽  
Corinna Stoltenburg ◽  
Akosua Sarpong-Bengelsdorf ◽  
Susanne Lebek
Keyword(s):  
Quality Of Life ◽  
Cerebral Palsy ◽  
Children And Adolescents ◽  
Well Being ◽  
Self Report ◽  
Life Questionnaire ◽  
German Version ◽  
Validity And Reliability ◽  
German Speaking

AbstractThe aim of the study was to determine the psychometric properties of the German version of the Cerebral Palsy Quality of Life Questionnaire for Children and Adolescents (CP QOL-Child and -Teen). It is a condition-specific questionnaire with a self-report version, measuring well-being rather than ill-being, which differs from existing measurement methods. Fourteen children (9–12 years) and 64 caregivers (4–12 years) answered the child questionnaire. Twenty-one adolescents and 26 caregivers (all adolescents 13–18 years) replied to the teen version. Functioning was categorized by the Gross Motor Function Classification System. For CP QOL-child internal consistency (Cronbach's α) ranged from 0.58 to 0.88 and for CP QOL-Teen from 0.68 to 0.95. Test–retest reliability after 2 to 4 weeks ranged between 0.75 and 0.94 in children's version and 0.89 and 0.96 in teen's version. Correlation with well-established generic KIDSCREEN-10 questionnaire was moderate to strong. The German versions of CP QOL-Child and -Teen are appropriate tools for assessing the quality of life of children and adolescents with cerebral palsy in the German-speaking population.

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 Fears, beliefs, and quality of life of patients with cancer vs the general population during the coronavirus disease 2019 (COVID-19) pandemic in Lombardy

2021 ◽  
pp. 030089162110228
Author(s):  
Carla Ida Ripamonti ◽  
Giacomo Massa ◽  
Daniela Insolvibile ◽  
Mauro Guglielmo ◽  
Guido Miccinesi ◽  
...  
Keyword(s):  
Quality Of Life ◽  
General Population ◽  
Perceived Risk ◽  
Well Being ◽  
Comprehensive Cancer Center ◽  
Cancer Center ◽  
Psychological Consequences ◽  
Patients With Cancer ◽  
Fear Of Cancer

Aim: To understand how patients with cancer reacted to the coronavirus disease 2019 (COVID-19) pandemic and whether their quality of life (QoL) was affected. Methods: In June 2020, 111 patients with cancer treated in the supportive care unit of a Comprehensive Cancer Center in Milan and 201 healthy controls from the general population were enrolled and assessed both quantitatively and qualitatively for fears and COVID-19–related beliefs as well as for QoL. Results: Fear of COVID-19 was significantly lower among patients (41% vs 57.6%; p = 0.007), as was fear of cancer (61.5% vs 85.6%; p < 0.001) and other diseases. The perceived risk of getting COVID-19 was lower among patients (25.2% vs 52.7%; p < 0.001), as was the belief of having been exposed to severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) (18.1% vs 40.8%; p < 0.001). The physical component of QoL was better among the population (54.5 vs 43.8; p < 0.001); the reverse was true for patients’ psychological well-being (44.6 vs 39.6; p < 0.001). The qualitative data supported such results, showing a reduced psychological effect on the patients with cancer compared to the controls. Various reasons explain this result, including the awareness of being treated for cancer and nevertheless protected against getting infected in a cancer center of public health reorganized to continue treating patients by protecting them and personnel from the risk of infection. Conclusions: The experience of a cancer diagnosis, together with proper hospital reorganization, may act as protective factors from fears and psychological consequences of the COVID-19 outbreak.

Quality of Life in Chilean Transgender Children and Adolescents

2021 ◽  
Author(s):  
Carolina Mendoza ◽  
Helena Poggi ◽  
Mónica Flores ◽  
Cristóbal Morales ◽  
Alejandro Martínez-Aguayo
Keyword(s):  
Quality Of Life ◽  
Children And Adolescents ◽  
School Environment ◽  
Social Acceptance ◽  
Well Being ◽  
Psychosocial Health ◽  
Cross Sectional Study ◽  
Cross Sectional ◽  
Psychological Well Being

Introduction: Transgender (TG) children and adolescents experience problems in school as well as with family and social relationships that can adversely affect their physical and psychosocial health and impair their quality of life (QOL). This study aims to assess health-related quality of life (HRQOL) in TG children. Methods: We performed a cross-sectional study comparing HRQoL in gender nonconforming (Trans) and gender conforming (CIS) children and adolescents using the Spanish version of KIDSCREEN-52 in 120 Chilean Trans and CIS children (aged 8–18 years) and their parents. All scores were standardized according to the KIDSCREEN manual. Results: Among the 100 questionnaires answered, 38 corresponded to children and adolescents aged 8.4–18 years. Twenty-one of them were TG (71% trans males) and 17 were CIS (76% females). Sixty-two parents answered the questionnaires: 33 from families of TG children (PTrans) and 29 from families of CIS children (PCis). Trans children had lower HRQOL scores in all domains compared to CIS children. The lowest-scoring domains for TG children were “Moods and Emotions”, “Psychological Well-Being” and “Social Acceptance”, and the highest-scoring domain was “School Environment”. The PTrans group had significantly higher scores than the Trans group for 3 of the 10 domains: “Psychological Well-Being”, “Moods and Emotions”, and “Parent Relations and Home Life”. Conclusion: Our results revealed that TG children and adolescents have lower QOL than their CIS counterparts, especially regarding items related to mental health. Furthermore, their parents may underestimate their well-being, confirming the vulnerability of the TG population. This finding underlies the need to perform early assessments of QOL for early detection and intervention in aspects that could deteriorate their quality of life.

scholarly journals Parent-reported sleep problems in children and adolescents with sickle cell disease: relationship to health-related quality of life

2021 ◽  
Author(s):  
Serkan Gunes ◽  
Rahime Aldemir ◽  
Adem Gunes ◽  
Ozalp Ekinci
Keyword(s):  
Quality Of Life ◽  
Children And Adolescents ◽  
Sickle Cell ◽  
Sleep Problems ◽  
Well Being ◽  
Health Related Quality ◽  
Cell Disease ◽  
Related Quality ◽  
Health Related

IntroductionChildren with sickle cell disease (SCD) can present a variety of clinical symptoms that may affect their sleep and health-related quality of life (HRQOL). This study aims to investigate the relation between sleep problems and HRQOL in children and adolescents with SCD.Material and methodsThe sample included 86 children and adolescents in the SCD patient group and 82 healthy controls, with an age range of 8-16 years. Subjects for the study were recruited from the Sickle Cell and Thalassemia Center of Hatay State Hospital, Hatay, Turkey. The Children’s Sleep Habits Questionnaire (CSHQ) was used to evaluate sleep problems and Kinder Lebens­qualitätsfragebogen: Children’s Quality of Life Questionnaire – revis­ed (KINDL-R) was used to examine HRQOL.ResultsTotal score, bedtime resistance, and night waking subscores of CSHQ were significantly higher in children with SCD when compared to healthy children. Total score, physical well-being, emotional well-being, social, and school subscores of KINDL-R were significantly lower in the patient group. Among SCD children, total score, bedtime resistance, sleep onset delay, daytime sleepiness, and parasomnias subscores of CSHQ were negatively correlated with KINDL-R total score. In the regression model, disease severity and CSHQ total score had significant negative associations with KINDL-R total score.ConclusionsSleep problems in SCD children appear to be negatively linked with HRQOL. Disease severity and sleep problems may be predictors of overall HRQOL in children and adolescents with SCD.

Do environmental barriers affect the parent-reported quality of life of children and adolescents with cerebral palsy?

2016 ◽  
Vol 49-50 ◽  
pp. 312-321 ◽  
Author(s):  
Marta Badia ◽  
M. Begoña Orgaz ◽  
María Gómez-Vela ◽  
Miguel A. Verdugo ◽  
Ana M. Ullán ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cerebral Palsy ◽  
Children And Adolescents ◽  
Environmental Barriers

scholarly journals Mental Health, Quality of Life and Violence Exposure in Low-Socioeconomic Status Children and Adolescents of Guatemala

2020 ◽  
Vol 17 (20) ◽  
pp. 7620
Author(s):  
Rosalba Company-Córdoba ◽  
Diego Gómez-Baya ◽  
Francisca López-Gaviño ◽  
Joaquín A. Ibáñez-Alfonso
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Food Insecurity ◽  
Children And Adolescents ◽  
Low Socioeconomic Status ◽  
Exposure To Violence ◽  
Well Being ◽  
Related Quality ◽  
Health Related

Growing up in vulnerable conditions has an impact on children and adolescents’ mental health and well-being outcomes. However, this evidence has rarely been obtained in middle and low-income countries like Guatemala, where food insecurity and exposure to violence frequently threaten childhood development. The aim of this study was to analyse the relations that sociodemographic and socioeconomic factors have with psychological adjustment of low-socioeconomic status (SES) Guatemalan children and adolescents, and how these relations were mediated by food insecurity and exposure to violence. A total of 185 participants (50.8% girls; aged between 6 to 17, M = 11.82, SD = 3.7) from three vulnerable schools located in rural and urban areas of Guatemala were assessed. The results indicated that exposure to violence significantly moderates the effect of sociodemographic and socioeconomic variables in measures of depression, anxiety and health-related quality of life. Adolescents more exposed to violence reported higher levels of depression and anxiety, as well as lower levels of health-related quality of life. In contrast, food insecurity did not seem to influence psychological adjustment outcomes in this low-SES sample. These findings highlight the relevance of exposure to violence for mental health and well-being, and is a factor that should be considered when designing public health policies to promote children and adolescents’ welfare.

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