Level of agreement between adolescents’ self‐assessment and parent proxy report of health‐related quality of life in adolescents with sickle cell disease

2020 ◽  
Vol 67 (4) ◽  
Author(s):  
Alphanso Blake ◽  
Natalie Guthrie‐Dixon ◽  
Marlyn Grindley ◽  
Antoinette Barton‐Gooden ◽  
Jennifer Knight‐Madden ◽  
...  
Keyword(s):  
Health Related Quality ◽  
Cell Disease ◽  
Self Assessment ◽  
Proxy Report ◽  
Parent Proxy Report ◽  
Related Quality ◽  
Health Related ◽  
Parent Proxy ◽  
Level Of Agreement

scholarly journals P.072 Agreement between children and their parents’ ratings of the health-related quality of life of children with Duchenne Muscular Dystrophy

2018 ◽  
Vol 45 (s2) ◽  
pp. S35-S35
Author(s):  
S Brar ◽  
C Campbell ◽  
E McColl ◽  
W Martens ◽  
M McDermott ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Self Report ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Parent Proxy ◽  
Level Of Agreement

Background: When measuring young Duchenne Muscular Dystrophy (DMD) patients’ health-related quality of life (HRQoL), parent-proxy reports are heavily relied on. Therefore, it is imperative that the relationship between parent-proxy and child self-report HRQoL is understood. This study examined the level of agreement between children and their parent-proxy rating of the child’s HRQoL. Methods: We used FOR-DMD clinical trial baseline data. HRQoL, measured using the PedsQL inventory, was reported by 178 parent and child (ages 4 to 7 years) dyads. Intracorrelation coefficients (ICC) measured absolute agreement while paired t-tests determined differences in the average HRQoL ratings between groups. Results: The level of agreement between child and parent-proxy ratings of HRQoL was poor for the generic PedsQL scale (ICC: 0.29) and its subscales; and, similarly low for the neuromuscular disease module (ICC:0.16). On average, parents rated their child’s HRQoL as poorer than the children rated themselves in all scales except for psychosocial and school functioning. Conclusions: Child and parent-proxy HRQoL ratings are discordant in this study sample, as occurs in other chronic pediatric diseases. This should be taken into account when interpreting clinical and research HRQoL findings in this population. Future studies should examine reasons for parents’ perception of poorer HRQoL than that reported by their children.

Comparison of Patient and Proxy Reporting of Health-Related Quality of Life in Adolescent Athletes Who Suffer a Sports-Related Injury and Require Orthopedic Consultation

2013 ◽  
Vol 22 (4) ◽  
pp. 248-253 ◽  
Author(s):  
Alison R. Snyder Valier ◽  
Elizabeth M. Swank ◽  
Kenneth C. Lam ◽  
Matthew L. Hansen ◽  
Tamara C. Valovich McLeod
Keyword(s):  
Quality Of Life ◽  
Self Report ◽  
Health Related Quality ◽  
Adolescent Athletes ◽  
Proxy Report ◽  
Outcome Measurements ◽  
Related Quality ◽  
Health Related ◽  
Parent Proxy

Context:Accurate assessment of health-related quality of life (HRQoL) is important for quality patient care. Evaluation of HRQoL typically occurs with patient self-report, but some instruments, such as the Pediatric Quality of Life Inventory (PedsQL), allow for proxy reporting. Limited information exists comparing patient and proxy reports of HRQoL after sport-related injury in adolescent athletes.Objective:To compare patient ratings and parent-proxy ratings of HRQoL in adolescent athletes who suffer musculoskeletal injuries requiring orthopedic consultation. The authors hypothesized poor agreement between patient and parent-proxy ratings of HRQoL.Design:Cross-sectional study.Setting:Orthopedic practice.Patients:Thirteen adolescent patients with a sport-related musculoskeletal injury requiring orthopedic consultation and 1 of their parents participated.Interventions:During the initial visit to the physician’s office, each patient was asked to complete the PedsQL, and the patient’s parent was asked to complete the parent-proxy version of the PedsQL.Main Outcome Measurements:The PedsQL is a pediatric generic outcome measure that consists of a total score and 4 subscale scores: physical, emotional, social, and school functioning. Means and standard deviations were calculated for all scores, and comparisons between patient-self report and parent-proxy ratings of HRQoL were made for the PedsQL total score and subscale scores using Pearson product–moment correlations (r).Results:Pearson product–moment correlations showed little to fair insignificant relationships between patient self-report and parent-proxy report of the PedsQL for the total score (r = −.1) and all subscales (range r = .1 to .4).Conclusions:Our results suggest a lack of agreement between patient and parent-proxy ratings of HRQoL, with patients rating their HRQoL lower than their parent. Patient perception of HRQoL may be more accurate than proxy report, which supports the use of patient-rated HRQoL in patient evaluation. Assessments of HRQoL made by proxies, even those close to the patient, may not represent patient health status.

scholarly journals Patient self-assessment of hospital pain, mood and health-related quality of life in adults with sickle cell disease

BMJ Open ◽  
2012 ◽  
Vol 2 (4) ◽  
pp. e001274 ◽  
Author(s):  
Kofi A Anie ◽  
Hannah Grocott ◽  
Lauren White ◽  
Mendwas Dzingina ◽  
Gabriel Rogers ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Health Related Quality ◽  
Cell Disease ◽  
Self Assessment ◽  
Related Quality ◽  
Health Related ◽  
Patient Self Assessment
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