title: Development of the Pediatric Advanced Care Quality of Life Scale (PAC-QoL): evaluating comprehension of items and response options.
abstract: 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.
  
  
  METHODS
  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.affiliation: Department of Psychology, University of Western Ontario, London, Ontario, Canada.
authors.forename: Tara Elise
authors.initials: TE
authors.lastname: Morley
authors.forename: Danielle
authors.initials: D
authors.lastname: Cataudella
authors.forename: Conrad V
authors.initials: CV
authors.lastname: Fernandez
authors.forename: Lillian
authors.initials: L
authors.lastname: Sung
authors.forename: Donna Lynn
authors.initials: DL
authors.lastname: Johnston
authors.forename: April
authors.initials: A
authors.lastname: Nesin
authors.forename: Shayna
authors.initials: S
authors.lastname: Zelcer
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D005260:Female; D006801:Humans; D008297:Male; D008495:Medical Oncology / Q000379:methods*; D009369:Neoplasms / Q000523:psychology*; D010290:Parents; D010372:Pediatrics / Q000379:methods; D011594:Psychometrics / Q000379:methods*; D011788:Quality of Life; D011795:Surveys and Questionnaires
keywords: oncology; palliative; pediatric; quality of life; scale development