title: Development of a disease-specific health-related quality of life questionnaire (THYCA-QoL) for thyroid cancer survivors.
abstract: BACKGROUND
  To date, no valid instrument is available that focuses on specific health-related quality of life (HRQoL) issues that affect thyroid cancer survivors. The objective of this study was to develop and pretest a thyroid cancer specific HRQoL questionnaire that can be used in addition to the more general European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30).
  
  
  METHODS
  Potentially relevant issues were identified by a systematic literature review, a focus group meeting, and an issue list completed by six health care professionals (HCP) and 18 thyroid cancer survivors. Resultant issues were analyzed on importance and relevance (phase I). The issues were formulated into a long provisional list of questions (phase II). These questions were administered in combination with the EORTC QLQ-C30 to 306 Dutch thyroid cancer survivors to pretest the hypothesized scale structure (phase III). Although the development of this questionnaire was not set up as an international study, phases I-III are in agreement with the methodology of the EORTC guidelines.
  
  
  RESULTS
  The literature search, focus group and issue list completed by HCP and survivors resulted in 75 issues. These were reduced to create a 30 item provisional list. Pretesting led to a selection of 24 items with a good range of response. This resulted in the THYCA-QoL containing 24 items and seven conceptual scales.
  
  
  CONCLUSIONS
  The THYCA-QoL in combination with the EORTC QLQ-C30 is ready for a large (international) scale validation study, and will assess HRQoL issues of most relevance and concern for thyroid cancer survivors.
authors.affiliation: Center of Research on Psychology in Somatic Diseases (CoRPS), Department of Medical Psychology and Neuropsychology, Tilburg University, The Netherlands. O.Husson@tilburguniversity.edu
authors.forename: Olga
authors.initials: O
authors.lastname: Husson
authors.forename: Harm R
authors.initials: HR
authors.lastname: Haak
authors.forename: Floortje
authors.initials: F
authors.lastname: Mols
authors.forename: Grard A
authors.initials: GA
authors.lastname: Nieuwenhuijzen
authors.forename: Willy-Anne
authors.initials: WA
authors.lastname: Nieuwlaat
authors.forename: Peter H
authors.initials: PH
authors.lastname: Reemst
authors.forename: Dyde A
authors.initials: DA
authors.lastname: Huysmans
authors.forename: Arno W
authors.initials: AW
authors.lastname: Toorians
authors.forename: Lonneke V
authors.initials: LV
authors.lastname: van de Poll-Franse
mesh_terms: D000328:Adult; D000368:Aged; D005260:Female; D006304:Health Status; D006801:Humans; D008297:Male; D008875:Middle Aged; D011788:Quality of Life / Q000523:psychology; D011795:Surveys and Questionnaires; D017741:Survivors / Q000523:psychology / Q000706:statistics & numerical data; D013964:Thyroid Neoplasms / Q000150:complications / Q000401:mortality / Q000523:psychology / Q000534:rehabilitation*; D055815:Young Adult