scholarly journals Differences in Child versus Parent Reports of the Child's Health-Related Quality of Life in Children with Epilepsy and Healthy Siblings

2010 ◽  
Vol 13 (6) ◽  
pp. 778-786 ◽  
Author(s):  
Christine Bower Baca ◽  
Barbara G. Vickrey ◽  
Ron D. Hays ◽  
Stefanie D. Vassar ◽  
Anne T. Berg
Keyword(s):  
Quality Of Life ◽  
Health Related Quality ◽  
Parent Reports ◽  
Healthy Siblings ◽  
Related Quality ◽  
Health Related

scholarly journals Health-related quality of life in children with Duchenne muscular dystrophy: a follow-up study

2015 ◽  
Vol 42 (S1) ◽  
pp. S8-S8
Author(s):  
Y Wei ◽  
K Speechley ◽  
C Campbell
Keyword(s):  
Quality Of Life ◽  
Clinical Trials ◽  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Health Related Quality ◽  
Parent Reports ◽  
Related Quality ◽  
Health Related ◽  
Over Time

Background: Improvement of health-related quality of life (HRQOL) is a major goal in chronic disease management and HRQOL has become an important outcome in clinical trials. Longitudinal data on HRQOL are needed to elucidate change over time and to assess effectiveness of interventions; such research is lacking in the paediatric Duchenne Muscular Dystrophy (DMD) population. Methods: We followed up participants from our initial HRQOL study in 2013 a year and a half later. Multidimensional generic and disease-specific measures from the Pediatric Quality of Life Inventory were used to assess HRQOL from child and parent perspectives. Mean changes in HRQOL were calculated. Results: Data collection is ongoing and currently, data from 16 families (out of the initial 98) are available. Preliminary results indicated that by both child and parent reports, there were declines in all domains of HRQOL except for social function, in which there was a slight improvement. Mean decline in HRQOL scores ranged from 1.6 to 8.6 for child reports; and 3.3 to 7.7 for parent reports. Conclusion: HRQOL of boys with DMD deteriorates over time. Our results may be helpful in interpreting patient reported outcomes in forthcoming clinical trials and determining minimally clinically important changes in this population.

Self- and Parent/Proxies-Reported Health-Related Quality Of Life In Children and Adolescents With Bleeding Disorders: Cross Sectional Investigation and Comparison With Healthy Siblings and Healthy Peers

Blood ◽  
2013 ◽  
Vol 122 (21) ◽  
pp. 4773-4773
Author(s):  
Neuner Bruno ◽  
Sylvia von Mackensen ◽  
Susan Halimeh ◽  
Susanne Holzhauer ◽  
Robert Klamroth ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Haemophilia A ◽  
Healthy Controls ◽  
Bleeding Disorders ◽  
Health Related Quality ◽  
Healthy Siblings ◽  
Related Quality ◽  
Health Related

Background Hereditary bleeding disorders (HBD) affect children from birth during their life course. Medical treatment and the overall prognosis of children with HBD have significantly progressed. But even in patients cared for in specialized treatment centers it remains unclear whether survival till adulthood goes along with health-related quality of life [Hr-QoL] comparable to other patients groups respectively comparable to population children. Therefore aim of the present study was to assess self- as well as parents/proxies reported Hr-QoL in children and adolescents with HBD and to compare the results with findings from children affected by another chronic medical condition respectively with healthy siblings and peers. Methods 91 patients with HBD (thrombosis / deep venous thrombosis, DVT, respectively Haemophilia A and B) aged 8 to 16 years from 6 Hemophilia study centers were investigated regarding Hr-QoL. Hr-QoL was assessed in patients and parents/proxies with the generic KINDL-R questionnaire exploring overall well-being and 6 sub-dimensions (physical well-being, psychological well-being, self-esteem, family-related well-being, friend-related well-being, and school-related well-being). Findings were compared with 70 children with stroke / TIA respectively with healthy controls (45 healthy siblings and 106 healthy peers). Results Overall well-being in children with thrombosis / DVT (77.6 ± 9.7 points) was comparable to healthy controls but in children with Haemophilia A or B (76.0 ± 9.6) lower compared with healthy peers (80.2 ± 9.7, p = 0.005). No differences occurred between healthy controls and children with stroke/TIA (74.2 ± 10.3). In children with HBD none of the KINDL-R sub-dimensions showed values below healthy siblings. Two KINDL-R sub-dimensions showed lower values compared with healthy peers. Parents/proxies rated the Hr-QoL of their children with HBD similar to their healthy children. The internal consistency of overall well-being in all study subgroups was acceptable (> 0.7) but showed poor results (< 0.5) in two KINDL-R sub-dimensions. Discussion The application of a generic Hr-QoL questionnaire in a sample of children and adults with HBD seems feasible. Their Hr-QoL seems comparable to their siblings but below their healthy peers. Disclosures: Halimeh: Octapharma AG: Investigator Other, Research Funding.

scholarly journals Health-related quality of life in patients with early-detected central congenital hypothyroidism

2021 ◽  
Author(s):  
Jolanda Christine Naafs ◽  
Jan Pieter Marchal ◽  
Paul Hendrikus Verkerk ◽  
Eric Fliers ◽  
Adrianus Sarinus Paulus van Trotsenburg ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Congenital Hypothyroidism ◽  
Linear Mixed Model ◽  
Pituitary Hormone ◽  
Health Related Quality ◽  
Parent Reports ◽  
Self Reports ◽  
Related Quality ◽  
Health Related

Abstract Context Central congenital hypothyroidism (CH) requires lifelong medical treatment. The majority of children with central CH have multiple pituitary hormone deficiencies (MPHD), but in some cases central CH is isolated. Most pituitary hormone deficiencies are associated with impaired health-related quality of life (HRQoL). However, studies on HRQoL in central CH are lacking. Objective to evaluate HRQoL and fatigue in children and young adults with central CH, as well as parent perspectives. Design nationwide cross-sectional study comparing HRQoL between early-detected central CH patients and unaffected siblings with the Pediatric Quality of Life inventory (PedsQL™) and PedsQL Multidimensional Fatigue Scale. Participants ≥8 years old filled in self-reports; parents of participants aged 3-18 years filled in parent-reports. Isolated central CH patients, MPHD patients and siblings were compared using a linear mixed model and Tukey’s post hoc test. Results Eighty-eight patients and 52 siblings participated, yielding 98 self-reports and 115 parent-reports. Isolated central CH patients (n=35) and siblings showed similar scores on all subscales, both in the self-reports and parent-reports. For MPHD patients (n=53), self-reported scores were similar to those of siblings. Parent-reported total HRQoL and fatigue scores were significantly poorer in MPHD patients compared with siblings (mean differences -10.2 and -9.4 points; p&lt;0.01), as were scores for physical functioning, social functioning and general fatigue. Conclusion Self-reported HRQoL scores in isolated central CH and MPHD patients were similar to siblings. However, parents reported significantly lower HRQoL and fatigue scores for MPHD patients, suggesting a difference in perceived limitations between MPHD patients and their parents.

scholarly journals Health-related quality of life in congenital heart disease surgery patients in Pakistan: protocol for a mixed-methods study

BMJ Open ◽  
2017 ◽  
Vol 7 (10) ◽  
pp. e018046 ◽  
Author(s):  
Laila Akbar Ladak ◽  
Babar Sultan Hasan ◽  
Janice Gullick ◽  
Khadija Awais ◽  
Ahmed Abdullah ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Congenital Heart Disease ◽  
Congenital Heart ◽  
Mixed Methods Study ◽  
Health Related Quality ◽  
Healthy Siblings ◽  
Related Quality ◽  
Health Related

IntroductionReduced health-related quality of life (HRQOL) has been reported in postoperative patients with congenital heart disease (CHD). However, there is a paucity of data from low-income and middle-income countries (LMIC). Differences in sociodemographics and sociocultural contexts may influence HRQOL. This protocol paper describes a study exploring HRQOL in surgical patients with CHD from a tertiary hospital in Pakistan. The study findings will assist development of strategies to improve HRQOL in a resource-constrained context.Methods and analysisThis prospective, concurrent triangulation, mixed-methods study aims to compare HRQOL of postsurgery patients with CHD with age-matched healthy siblings and to identify HRQOL predictors. A qualitative component aims to further understand HRQOL data by exploring the experiences related to CHD surgery for patients and parents. Participants include patients with CHD (a minimum of n~95) with at least 1-year postsurgery follow-up and no chromosomal abnormality, their parents and age-matched, healthy siblings. PedsQL 4.0 Generic Core Scales, PedsQL Cognitive Functioning Scale and PedsQL 3.0 Cardiac Module will measure HRQOL. Clinical/surgical data will be retrieved from patients’ medical files. Student’s t-test will be used to compare the difference in the means of HRQOL between CHD and siblings. Multiple regression will identify HRQOL predictors. A subsample of enrolled patients (n~20) and parents (n~20) from the quantitative arm will be engaged in semistructured qualitative interviews, which will be analysed using directed content analysis. Anticipated challenges include patient recruitment due to irregular follow-up compliance. Translation of data collection tools to the Urdu language and back-translation of interviews increases the study complexity.Ethics and disseminationEthics approval has been obtained from The Aga Khan University, Pakistan (3737-Ped-ERC-15). Study findings will be published in peer-reviewed journals and presented at national and international conferences.

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