ORCID Profile
0000-0002-7371-9302
Current Organisation
Dalhousie University
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Publisher: Elsevier BV
Date: 09-2014
DOI: 10.1016/J.JPEDS.2014.05.024
Abstract: To develop and validate a Pediatric Liver Transplantation Quality of Life (PeLTQL) questionnaire via an international multicenter collaboration. Item generation with 146 child and/or parent interviews (92 pediatric liver transplantation [LT] recipients) and 3 focus groups generated over 300 items. An item reduction questionnaire with 76 questions was completed by 320 participants (212 pediatric LT recipients). Frequency-importance product ranking, questionnaire formatting, and pre-testing resulted in a 26-item PeLTQL questionnaire. Factor analysis identified 3 domains: future health, coping and adjustment, and social-emotional. The validation phase was completed by 133 (46% male) LT recipients (aged 8-18 years). Internal consistency (Cronbach α = 0.86) and test-retest reliability (intraclass correlation coefficient = 0.85) were excellent. Mean patient PeLTQL score was 69.54 ± 13.06. Construct validity with validated tools identified significant correlations between mean PeLTQL scores and (1) Pediatric Quality of Life Inventory generic (r = 0.64, P < .001) (2) Pediatric Quality of Life Inventory transplant (r = 0.73, P < .001) and (3) Screen for Child Anxiety Related Disorders (r = -0.57, P < .001) scores. Only 17/3458 (0.5%) questions were left blank. A Flesch-Kincaid grade level of 5.4 was calculated as a measure of the PeLTQL readability statistic. The PeLTQL is a valid and reliable novel 26-item disease-specific health related quality of life instrument for LT recipients aged 8-18 years. Low PeLTQL scores can identify patients at risk for childhood anxiety and depression. The tool is now ready for broad use in both clinical practice and clinical interventional trials.
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 03-10-2023
Publisher: Informa UK Limited
Date: 11-2018
DOI: 10.2147/CLEP.S178056
Publisher: Wiley
Date: 09-07-2021
DOI: 10.1111/PETR.14072
Abstract: HRQOL is a key outcome following pediatric LT. Parent‐proxy reports may substitute for patients unable to report their own HRQOL. This study compared parent‐proxy and self‐reported HRQOL in children who have undergone LT. Pediatric LT recipients between the ages of 8 and 18 years, and a parent, completed self and proxy versions of the PeLTQL questionnaire, PedsQL Generic and Transplant modules, and standardized measures of depression and anxiety. Data from 129 parent–patient dyads were included. Median parent age was 44 years, and most (89%) were mothers. Median patient age was 2.5 years at LT and 13.6 years at the time of study participation. Parents had significantly lower scores than patients on PedsQL total generic (70.8 ± 18.5 and 74.3 ± 19.0, p = .01), PeLTQL coping and adjustment (63.0 ± 15.6 and 67.3 ± 16.2, p .01), and social‐emotional (66.3 ± 14.9 and 71.9 ± 15.6, p .001) domains. Higher patient anxiety and depression were related to larger absolute differences between parent‐proxy and self‐reported scores on all HRQOL measures (all p .05). In this disparity, parents reported higher HRQOL scores than their child as self‐reported anxiety and depression scores increased. Differences in concordance between parent‐proxy and self‐reported HRQOL scores can be more prominent when children have more symptoms of anxiety and depression. Children's mental health symptoms should be queried, if feasible, when interpreting differences in parent and child reports of HRQOL.
Publisher: Springer Science and Business Media LLC
Date: 23-08-2013
DOI: 10.1007/S00384-012-1561-0
Abstract: Health-related quality of life (HRQL) is not well studied in proctocolectomy patients with pediatric onset of ulcerative colitis (UC). We aimed to (1) compare the HRQL of proctocolectomy patients with those treated with conventional therapy and (2) determine factors that influence HRQL in UC patients < 18 years. Chart review was done on patients diagnosed with pediatric onset of UC (<18) at the Stollery Children's Hospital. HRQL was evaluated in 88 patients using disease- and age-specific questionnaires IMPACT III ( 143 points) were most likely to be in remission (p = 0.05), they were less likely to be on medication (p < 0.05), have parent/guardian with postsecondary education (p = 0.01), did not suffer from fatigue (p < 0.01), and did not report depression (p < 0.02). The IMPACT correlation with PUCAI (adjusted r (2) = 0.33) and EQ-VAS (adjusted r (2) = 0.45) was strong. Surgical patients reported to have a HRQL comparable to or better than the nonsurgical patients. Depression, fatigue, parent/guardian education, and drugs influence HRQL.
No related grants have been discovered for Anthony Otley.