Health-related quality of life in children and adolescents with cerebral palsy

Radšel, Anja; Osredkar, Damjan; Neubauer, David

doi:10.1515/sjph-2017-0001

Cited by 20 publications

(26 citation statements)

References 22 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…This applies particularly to such elements of the PedsQL questionnaire as the feeling of fear, sadness, anger, or establishing relationships with peers. Although most interventions aim to improve physical independence, a lot more could be done in the wider society to improve social inclusion and participation of children with CP [45].…”

Section: Discussionmentioning

confidence: 99%

Quality of life in children and young people with tetraplegic cerebral palsy

Michalska¹,

Markowska²,

Śliwiński³

et al. 2018

View full text Add to dashboard Cite

Introduction: Health-related quality of life (HRQOL) is an important outcome of health interventions for children and youths with cerebral palsy (CP). Aim of the research: To describe HRQOL of children and young people with tetraplegic cerebral palsy from the parents' perspectives, and explore the impact of four factors (severity of CP, intellectual disability, age, and gender) on HRQOL. Material and methods: This is a descriptive study, conducted in educational centres in central and southern Poland. The study encompassed a group of 149 children and youths with tetraplegic cerebral palsy (TCP). The HRQOL study described in this paper was carried out using the PedsQL 4.0 Generic Core and PedsQL 3.0 Cerebral Palsy Module. Results: The lowest subscale score in generic core scales was physical functioning (mean ± SD: 11.1 ±8.5), the highest being emotional functioning (47.1 ±22.2). The lowest subscale score in CP module was daily activities (3.2 ±8.5), the highest being pain and hurt (57.1 ±29.3). PedsQL scores were related to MASC level, GMFCS level, and degree of intellectual disability, but not gender. Age correlated only with the assessment of pain and hurt (Pearson r =-0.190; p = 0.020). This study showed significant deficits in HRQOL for children with TCP, especially as regards their physical HRQOL. Conclusions: More studies aimed at searching factors related to psychosocial HRQOL are needed. In relation with the increasing life expectancy of persons with TCP, parents and health professionals should pay more attention to appropriate assessment of pain. Streszczenie Wprowadzenie: Jakość życia uwarunkowana stanem zdrowia (HRQOL) jest ważnym skutkiem interwencji zdrowotnych u dzieci i młodzieży z mózgowym porażeniem dziecięcym. Cel pracy: Przedstawienie charakterystyki HRQOL dzieci i młodzieży z postacią tetraplegiczną mózgowego porażenia dziecięcego sporządzonej na podstawie oceny rodziców, a także analiza wpływu na nią czterech czynników (stopnia ciężkości porażenia mózgowego, niepełnosprawności intelektualnej, wieku oraz płci). Materiał i metody: Jest to badanie opisowe przeprowadzone w placówkach edukacyjnych zlokalizowanych w środkowej i południowej Polsce. W badaniu udział wzięło 149 osób z postacią tetraplegiczną mózgowego porażenia dziecięcego. Do oceny HRQOL zastosowano PedsQL 4.0 Generic Core i PedsQL 3.0 Cerebral Palsy Module. Wyniki: Najniższą ocenę dla Generic Core Scales uzyskano w podskali funkcjonowanie fizyczne (średnia ± odchylenie standardowe: 11,1 ±8,5), a najwyższą dla funkcjonowania emocjonalnego (47,1 ±22,2). Najniższą ocenę w CP Module uzyskano 113 Quality of life in children and young people with tetraplegic cerebral palsy Medical Studies/Studia Medyczne 2018; 34/2

show abstract

Section: Discussionmentioning

confidence: 99%

Quality of life in children and young people with tetraplegic cerebral palsy

Michalska¹,

Markowska²,

Śliwiński³

et al. 2018

View full text Add to dashboard Cite

show abstract

“…Previous studies show the poor quality of life of this population when compared to healthy adolescent (6,(8)(9) , highlighting the need for research on all aspects of quality of life of adolescents with cerebral palsy, especially in low and middle income countries (9)(10)(11) . In addition, the limitation of centers specialized in rehabilitation in the care of adolescents with cerebral palsy is notorious.…”

Section: Introductionmentioning

confidence: 92%

“…The limitations become more evident at a stage in life that imposes countless challenges. Personality disorders and the search for autonomy and independence, inherent to adolescence, face the dependence on their caregivers to perform many activities (3,(5)(6)(7) .…”

Section: Introductionmentioning

confidence: 99%

Quality of life of adolescents with cerebral palsy: agreement between self-report and caregiver’s report*

Ferreira

Garcia

Prudente

et al. 2020

Rev. Latino-Am. Enfermagem

View full text Add to dashboard Cite

Objective: to assess the quality of life (QOL) of adolescents with cerebral palsy (CP) by self-report and by the caregiver’s report, and to analyze the agreement between these reports. Method: cross-sectional study conducted with 101 adolescents with CP and 101 caregivers. Both answered the Pediatric Quality of Life Inventory (PedsQL), module 4.0 - Generic (PedsQL 4.0) and module 3.0 - PC (PedsQL 3.0). Agreement between reports was analyzed using the Mann-Whitney test and the intra-class correlation coefficient (ICC) (p<0.05). Results: the lowest scores were in physical health, school activities and fatigue in the self-report. The lowest scores were in physical health and daily activities, in the caregivers’ report. Perceptions among adolescents and caregivers differed in physical health, movement and equilibrium, daily and school activities, with a lower score for caregivers in all of them. The agreement between the self-report and the caregivers’ report was poor (ICC<0.44) and in both instruments, the caregivers’ report was less optimistic. Conclusion: physical health is the most impaired domain of the QOL of adolescents with CP, both in the self-report and in the caregivers’ report. However, there is poor agreement between these reports, emphasizing that the use of the caregivers’ report should be cautious.

show abstract

“…A cross-sectional cohort study which examined the HRQoL in children and adolescents with CP reported the higher rate of HRQoL in children, followed by adolescents and, in the end, parents. An explanation could be the way in which children feels the limitations and restrictions, which have different significance as the child becomes adolescent, while the parents/caregivers tend to compare their children with healthy children [30]. In 2018 Ozkan compared children's QoL and mothers' burden in different types of CP and established that the lowest children's QoL score was reached in quadriplegia, followed by hemiplegia and diplegia, and demonstrated the existence of a significant negative correlation between mothers' burden and child's QoL [31].…”

Section: Introductionmentioning

confidence: 99%

Improving the perspectives on quality of life for adolescents with cerebralpalsy by medical textile

Sporea¹,

Florescu

Orzan

et al. 2020

Industria Textila

View full text Add to dashboard Cite

The quality of life (QoL) can be defined as the individual’s perception of his own existence, both from the point of viewof the physical integrity of the body’s structures and of functionality too, as well as of the activity, respectively thecapability of performing tasks, and of the participation, regarded as the involvement in the life situations.From a medical perspective, the quality of life assessment is an indicator that provides important information, closelyrelated to the improvement of the health status and the effectiveness of the therapeutic-rehabilitative interventions. Thetextile sector by research-development activities and by its numerous projects and accomplishments in the bio-materials, biotechnologies and medical device, showed a steady focus, in close relation to the medical field, on disabledpersons’ quality of life and on the facilitation of their social and professional integration. The aim of rehabilitative interventions is to obtain the best possible physical and mental health, allowing each patient tobuild social relationships with family and community and, on the other hand, to acquire professional skills for being ableto find a suitable job which will improve his wellbeing and quality of life.This paper presents how adolescents with cerebral palsy and their parents/caregivers perceive the quality of life of theadolescent taking into consideration the activity limitations and the participation restrictions.The results of the study showed the existence of discrepancies between adolescents’ and parents’ reports regarding theQoL, with adolescents’ reporting a higher QoL than did their parents.Optimism and positive thinking can be seen as augmentation factors of the therapeutic interventions’ effects byincreasing the adolescent’s involvement in the rehabilitation process, having as direct benefit early and better results.

show abstract

Health-related quality of life in children and adolescents with cerebral palsy

Cited by 20 publications

References 22 publications

Quality of life in children and young people with tetraplegic cerebral palsy

Quality of life in children and young people with tetraplegic cerebral palsy

Quality of life of adolescents with cerebral palsy: agreement between self-report and caregiver’s report*

Improving the perspectives on quality of life for adolescents with cerebralpalsy by medical textile

Contact Info

Product

Resources

About