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Comparison of 4 Pediatric Health-Related Quality-of-Life Instruments: A Study on a Medicaid Population.

ABSTRACT: BACKGROUND:Few studies have compared multiple health-related quality-of-life (HRQOL) instruments simultaneously for pediatric populations. This study aimed to test psychometric properties of 4 legacy pediatric HRQOL instruments: the Child Health and Illness Profile (CHIP), the KIDSCREEN-52, the KINDL, and the Pediatric Quality of Life Inventory (PedsQL). METHODS:This study used data from 908 parents whose children (ages 2-19 years) were enrolled in Florida Medicaid. Parents were asked via telephone interview to complete each instrument appropriate to the age of their children. Structural, convergent/discriminant, and known-group validities were investigated. We examined structural validity using confirmatory factor analyses. We examined convergent/discriminant validity by comparing Spearman rank correlation coefficients of homogeneous (physical functioning and physical well-being) versus heterogeneous (physical and psychological functioning) domains of the instruments. We assessed known-groups validity by examining the extent to which HRQOL differed by the status of children with special health needs (CSHCN). RESULTS:Domain scores of the 4 instruments were not normally distributed, and ceiling effects were significant in most domains. The KIDSCREEN-52 demonstrates the best structural validity, followed by the CHIP, KINDL, and PedsQL. The PedsQL and the KIDSCREEN-52 show better convergent/discriminant validity than the other instruments. Known-groups validity in discriminating CSHCN versus no needs was the best for the PedsQL, followed by the KIDSCREEN-52, the CHIP, and the KINDL. CONCLUSION:No one instrument was fully satisfactory in all psychometric properties. Strategies are recommended for future comparison of item content and measurement properties across different HRQOL instruments for research and clinical use.

SUBMITTER: Kenzik KM

PROVIDER: S-EPMC4199940 | biostudies-literature | 2014 Jul

REPOSITORIES: biostudies-literature

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Comparison of 4 Pediatric Health-Related Quality-of-Life Instruments: A Study on a Medicaid Population.

Kenzik Kelly M KM Tuli Sanjeev Y SY Revicki Dennis A DA Shenkman Elizabeth A EA Huang I-Chan IC

Medical decision making : an international journal of the Society for Medical Decision Making 20140416 5

<h4>Background</h4>Few studies have compared multiple health-related quality-of-life (HRQOL) instruments simultaneously for pediatric populations. This study aimed to test psychometric properties of 4 legacy pediatric HRQOL instruments: the Child Health and Illness Profile (CHIP), the KIDSCREEN-52, the KINDL, and the Pediatric Quality of Life Inventory (PedsQL).<h4>Methods</h4>This study used data from 908 parents whose children (ages 2-19 years) were enrolled in Florida Medicaid. Parents were a ...[more]

PMID: 24739533

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Project description:RATIONALE:Having developed the first disease-specific, health-related quality of life (HRQoL) instruments for children with primary ciliary dyskinesia (PCD), we aimed to assess the psychometric performance of quality of life (QOL)-PCD child, adolescent, and parent-proxy versions in terms of reliability and validity across cross-cultural settings and caring for patients with this rare disease. METHODS:Children (n?=?71), adolescents (n?=?85), and parents (n?=?68) from multiple centers in the UK and North America completed age-appropriate QOL-PCD and generic QOL measures: pediatric QOL inventory, COPD assessment test (CAT), and Sino-Nasal Outcome Test 20. Total of 13 children, 13 parents, and 17 adolescents repeated QOL-PCD 10 to 14 days later to assess test-retest reliability. Multitrait analysis evaluated how the items loaded to hypothesized scales: physical, emotional & social functioning, treatment burden, role, vitality, upper and lower respiratory symptoms, and ears and hearing symptoms. Examination of item-to-total correlations led to removal of three, five, and six items, respectively in the prototype child, adolescent and parent-proxy versions; the validated measures now comprise between 34 and 38 items. RESULTS:The QOL-PCD scales had good internal consistency; Cronbach's ? for QOL-PCD parent-proxy ranged 0.62 to 0.86. Test-retest reliability demonstrated stability across all scales; for example QOL-PCD adolescent intraclass correlation coefficients ranged 0.71 to 0.89. Significant relationships were found between QOL-PCD scales and similar constructs on generic questionnaires, for example, QOL-PCD adolescent lower respiratory symptoms and the CAT score (r?=?.64, P?<?.01); weaker correlations were found between different constructs. CONCLUSION:Age-specific QOL-PCD demonstrated good internal consistency, test-retest reliability, and validity. QOL-PCD offers promising outcome measures for multicenter clinical trials, as well as monitoring symptoms, functioning, and QOL during routine care.

Project description:OBJECTIVES:To integrate items from two widely used oral health-related quality of life (OHRQoL) questionnaires, the General Oral Health Assessment Index (GOHAI) and the Oral Impacts on Daily Performances (OIDP), as well as culturally-specific items of the Oral Health Impact Profile (OHIP) into a four-dimensional OHRQoL model consisting of Oral Function, Orofacial Pain, Orofacial Appearance, and Psychosocial Impact. METHODS:Subjects came from an ancillary study of the Dimensions of Oral Health-Related Quality of Life Project (N=267 patients, mean age±SD: 54.0±17.2years, 58% women.) Patients filled in the original 49 items of OHIP and 22 additional OHRQoL items in a cross-sectional study. These additional items consisted of 7 culturally specific OHIP items and 15 GOHAI or OIDP items with unique content not covered in OHIP-49. Before data collection, three experts hypothesized to which of the four OHRQoL dimensions these items belong. Hypotheses were tested in correlation analyses between the 22 items and the four dimension scores that were derived from OHIP-49. RESULTS:Five of the 22 items did not provide sufficient information to which dimension they belong. In 16 of the remaining 17 items, the pattern of correlation coefficients fitted experts' a priori hypotheses. Acceptance of 16 of the 17 hypotheses was interpreted as evidence that additional (not in OHIP-49 contained) OHRQoL items can be assigned to Oral Function, Orofacial Pain, Orofacial Appearance, and Psychosocial Impact. CONCLUSION:Items of three OHRQoL instruments can be integrated into a dimensional OHRQoL model consisting of Oral Function, Orofacial Pain, Orofacial Appearance, and Psychosocial Impact. CLINICAL SIGNIFICANCE:Oral Function, Orofacial Pain, Orofacial Appearance, and Psychosocial Impact can serve as a simple and clinically appealing set of oral health-related quality of life (OHRQoL) dimensions and therefore provide an opportunity for simpler, but psychometrically improved OHRQoL measurement in the future.

Project description:ObjectiveThe general aim was to meet the need for empirical comparative studies of health-related quality of life (HRQoL) assessment instruments, by evaluating and comparing the psychometric properties and results of three different, widely used, generic HRQoL instruments in a population sample. The specific aims were to evaluate the subscales of the different instruments that measure the same domain and to assess the association between the HRQoL measures and a single-item self-rated health scale.DesignAn observational cross-sectional study.SettingA population-based sample from Gothenburg, Sweden, was studied in 2008 in the WHO MONItoring of trends and determinants for CArdiovascular disease.ParticipantsA total of 414 subjects were included, 77% women, age range 39-78 years.InterventionsThe Nottingham Health Profile (NHP), the Short Form-36 questionnaire (SF-36), the Psychological General Well-Being Index (PGWB) and a self-rated health scale were used.Outcome measuresScores were analysed for their psychometric properties, internal consistency (Cronbach's α), construct validity (Spearman's rank correlations and R2 coefficients) and discriminative ability for the presence of self-rated ill-health.ResultsPGWB and SF-36 had higher Cronbach's α scores than NHP. All correlations calculated between the subscales that were conceptually similar were significant (p<0.01). All subscales could differentiate the presence of self-rated ill-health according to the self-rated health scale (p<0.001). The self-rated health scale correlated strongly with all of the three HRQoL instruments used.ConclusionsThere was a high concordance between the instruments within each domain that was conceptually similar. All three HRQoL instruments (PGWB, SF-36 and NHP) could discriminate the presence of self-rated ill-health. The simple and quick self-rated health scale correlated strongly with the more time-consuming PGWB, SF-36 and NHP. The result supports the existence of a strong association between the self-rated health scale and HRQoL in the general population.

Project description:OBJECTIVES:Mortality from pediatric sepsis has steadily declined over the past several decades; however, little is known about morbidity among survivors. We aimed to determine the prevalence of and risk factors for failure to recover to baseline health-related quality of life following community-acquired pediatric sepsis. DESIGN:Retrospective cohort study. SETTING:Seattle Children's Hospital. PATIENTS:Children aged 1 month to 21 years admitted to the inpatient wards or ICUs from 2012 to 2015 who met 2005 consensus sepsis criteria within 4 hours of hospitalization and were enrolled in the hospital's Outcomes Assessment Program with baseline, admission, and post-discharge health-related quality of life data available. INTERVENTIONS:None. MEASUREMENTS AND MAIN RESULTS:We assessed health-related quality of life with the Pediatric Quality of Life Inventory for pre-admission baseline, admission, and post-discharge (median, 31 d) status. We determined associations between patient and illness characteristics with failure to recover within 4.5 points of baseline at follow-up (the minimum clinically significant difference between two scores). Of 790 patients, 23.8% failed to recover to baseline health-related quality of life at follow-up. Factors associated with failure to recover were septic shock, older age, private insurance, complex chronic disease, immune compromise, CNS infection or bacteremia, ICU admission, and longer length of stay. On multivariable analysis controlling for time to follow-up, failure to recover was independently associated with septic shock (relative risk, 1.79; 95% CI, 1.24-2.58), older age (relative risk, 1.02/yr; 95% CI, 1.01-1.05), immune compromise (relative risk, 1.83; 95% CI, 1.40-2.40), and length of stay (relative risk, 1.03/d; 95% CI, 1.01-1.04). CONCLUSIONS:Nearly one-quarter of children surviving hospitalization for community-acquired sepsis experienced a clinically significant deterioration in health-related quality of life. We identify risk factors for poor outcomes following sepsis and highlight the need for ongoing evaluation and treatment by primary and specialty care providers for pediatric sepsis survivors after hospital discharge.

Project description:ImportanceHealth-related quality of life (HRQOL) is regarded as a key outcome for evaluating treatment efficacy. However, it is uncertain how HRQOL evolves after epilepsy surgery compared with medical therapy, such as whether it continues to improve over time, improves and then remains stable, or deteriorates after a period of time.ObjectiveTo assess trajectory of HRQOL over 2 years in children with drug-resistant epilepsy (DRE) treated with surgery compared with medical therapy.Design, setting, and participantsProspective cohort study assessing HRQOL longitudinally over 2 years. Participants were children recruited from 8 epilepsy centers in Canada from 2014 to 2019 with suspected DRE aged 4 to 18 years who were evaluated for surgery. Data were analyzed from May 2014 to December 2021.ExposuresEpilepsy surgery or medical therapy.Main outcomes and measuresHRQOL was measured using the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE)-55. HRQOL and seizure frequency were assessed at baseline, 6-month, 1-year, and 2-year follow-ups. Clinical, parent, and family characteristics were assessed at baseline. A linear mixed model was used to evaluate HRQOL over time, adjusting for baseline clinical, parent, and family characteristics.ResultsThere were 111 surgical and 154 medical patients (mean [SD] age at baseline was 11.0 [4.1] years; 118 [45%] were female). At baseline, HRQOL was similar among surgical and medical patients. HRQOL of surgical patients was 3.0 (95% CI, -0.7 to 6.8) points higher at 6-month, 4.9 (95% CI, 0.7 to 9.1) points higher at 1-year, and 5.1 (95% CI, 0.7 to 9.5) points higher at 2-year follow-ups compared with medical patients. Surgical patients experienced greater improvements in social functioning relative to medical patients, but not for cognitive, emotional, and physical functioning. At 2-year follow-up, 72% of surgical patients were seizure-free, compared with 33% of medical patients. Seizure-free patients reported higher HRQOL than those who were not.Conclusions and relevanceThis study provided evidence on the association between epilepsy surgery and children's HRQOL, with improvement in HRQOL occurring within the first year and remaining stable 2 years after surgery. By demonstrating that surgery improved seizure freedom and HRQOL, which has downstream effects such as better educational attainment, reduced health care resource utilization, and health care cost, these findings suggest that the high costs of surgery are justified, and that improved access to epilepsy surgery is necessary.

Dataset Information

Comparison of 4 Pediatric Health-Related Quality-of-Life Instruments: A Study on a Medicaid Population.

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Comparison of 4 Pediatric Health-Related Quality-of-Life Instruments: A Study on a Medicaid Population.

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