quality of life

Background: Rheumatoid arthritis is the most prevalent chronic rheumatologic disease of children. The quality of life (QOL) in these individuals is affected by physical pain, discomfort, treatment complications, and frequent absences from school leading to academic failure. No research similar to the present investigation was performed in this area. Aim: We aimed to evaluate the problems of children with rheumatoid arthritis. Moreover, we assessed the effect of family-centered empowerment on the QOL of these children.

Aim: To assess feeding difficulties and nutritional status among children with cerebral palsy (CP) in Ghana, and whether severity of feeding difficulties and malnutrition are independently associated with caregiver quality of life (QoL).

Respite care is one integral component of the transition process from paediatric to adult health care, and is of particular importance to individuals with medical complexities. Numerous gaps that exist within the current system limit a child and family's ability to access quality respite care during a time when it is often most needed. Identifying and addressing these gaps in a systematic and collaborative way presents an opportunity to improve the quality of life for this vulnerable, ever growing population and their families.

Background: Caregiver-oriented quality of life (QoL) research in alopecia areata is limited. No study has used a parent-tailored survey to examine the relationship between QoL and severity of alopecia as measured by Severity of Alopecia Tool (SALT) scores.

Objectives: This is a prospective study that describes QoL in parents of pediatric patients with all subtypes of alopecia areata and investigates the relationship between QoL and severity of disease, duration of disease, and age of patients.

Objective: This study examines theoretical covariates of health-related quality of life (HRQL) in parents of pediatric brain tumor survivors (PBTS) following completion of tumor-directed therapy.; Methods: Fifty PBTS (ages 6-16) completed measures of neurocognitive functioning and their parents completed measures of family, survivor, and parent functioning.

Objectives: Prader-Willi syndrome (PWS) significantly impacts health-related quality of life; however, its relational and existential aspects remain unknown in Italian clinical and social debate. The project aimed to investigate the impact of PWS on illness experience through narrative medicine (NM) to understand the daily life, needs and resources of patients with PWS and their caregivers, and to furnish insights for clinical practice.

Purpose: The implications of parenting a child with cerebral palsy (CP) are multifaceted, as parents have to cope with their child's functional limitations and specific needs, and prepare for the possibility of long-term dependence. There has been significant research on the consequences of managing these parenting tasks. This article reviews the literature on the effects of parenting children with CP, and summarises the related factors.

Background: The ASCOT-Carer and Carer Experience Scale are instruments designed to capture aspects of quality of life 'beyond health' for family carers. The aim of this study was to compare and validate these two carer care-related measures, with a secondary aim to compare both instruments to the three-level EQ-5D (EQ-5D-3 L) measure of health-related quality of life.

Objectives: General and diabetes-specific family functioning may be associated with youth’s adaptation to type 1 diabetes (T1D); however, empirically derived patterns of family functioning and diabetes-specific conflict among youth have not been explored in relation to T1D adaptation.

Background/objectives: Cosmetic camouflage is known to improve quality of life in adults. Few data are available regarding cosmetic camouflage in children, and thus it is not often selected as a mode of treatment. We sought to determine whether cosmetic camouflage leads to improved quality of life of pediatric patients with visible dermatoses and their parent or primary caregiver.