BACKGROUND: Validated tools that measure quality of life (QOL) for children with poor prognosis malignancies are not available. We are developing a novel instrument, The Pediatric Advanced Care-Quality of Life Scale (PAC-QoL), in order to address this gap. Instrument development requires a phase of item reduction and assessment of item comprehension in the target population. This manuscript provides a report on this phase in the development of the PAC-QoL. PROCEDURE: Children with poor prognosis cancer and/or their parents were invited to participate in cognitive probing interviews. Participants' understanding of each item was rated from 0 (did not understand) to 4 (completely understood). To evaluate the response scale, an overall percentage of respondents' ability to accurately distinguish between the four response options was calculated. RESULTS: Four age- and reporter-specific versions of the PAC-QoL were tested with 74 participants. Mean (±SD) comprehension scores across versions ranged from 3.40 ± .0.30 (child self-report) to 3.69 ± 0.23 (parent of toddler report). The number of items deleted or modified to improve understandability ranged from 46% of all items on the parent-of-child report to 56% for the child and adolescent self-reports. Respondent's abilities to accurately distinguish between response-scale options ranged from 84% (child-report) to 98% (parent-toddler report). CONCLUSIONS: We demonstrate a high degree item understandability and response-scale separation in the current version of the PAC-QoL. The scale is ready for psychometric evaluation in its target population.
BACKGROUND: Validated tools that measure quality of life (QOL) for children with poor prognosis malignancies are not available. We are developing a novel instrument, The Pediatric Advanced Care-Quality of Life Scale (PAC-QoL), in order to address this gap. Instrument development requires a phase of item reduction and assessment of item comprehension in the target population. This manuscript provides a report on this phase in the development of the PAC-QoL. PROCEDURE: Children with poor prognosis cancer and/or their parents were invited to participate in cognitive probing interviews. Participants' understanding of each item was rated from 0 (did not understand) to 4 (completely understood). To evaluate the response scale, an overall percentage of respondents' ability to accurately distinguish between the four response options was calculated. RESULTS: Four age- and reporter-specific versions of the PAC-QoL were tested with 74 participants. Mean (±SD) comprehension scores across versions ranged from 3.40 ± .0.30 (child self-report) to 3.69 ± 0.23 (parent of toddler report). The number of items deleted or modified to improve understandability ranged from 46% of all items on the parent-of-child report to 56% for the child and adolescent self-reports. Respondent's abilities to accurately distinguish between response-scale options ranged from 84% (child-report) to 98% (parent-toddler report). CONCLUSIONS: We demonstrate a high degree item understandability and response-scale separation in the current version of the PAC-QoL. The scale is ready for psychometric evaluation in its target population.
Authors: Laura C Pinheiro; Molly McFatrich; Nicole Lucas; Jennifer S Walker; Janice S Withycombe; Pamela S Hinds; Lillian Sung; Deborah Tomlinson; David R Freyer; Jennifer W Mack; Justin N Baker; Bryce B Reeve Journal: Qual Life Res Date: 2017-09-06 Impact factor: 4.147
Authors: Briony F Hudson; Linda Jm Oostendorp; Bridget Candy; Victoria Vickerstaff; Louise Jones; Monica Lakhanpaul; Myra Bluebond-Langner; Paddy Stone Journal: Palliat Med Date: 2016-09-08 Impact factor: 4.762