title: Cross-cultural development of the EORTC QLQ-SWB36: a stand-alone measure of spiritual wellbeing for palliative care patients with cancer.
abstract: BACKGROUND
  No existing stand-alone measures of spiritual wellbeing have been developed in cross-cultural and multiple linguistic contexts.
  
  
  OBJECTIVE
  Cross-cultural development of a stand-alone European Organisation for Research and Treatment of Cancer (EORTC) measure of spiritual wellbeing for palliative care patients with cancer.
  
  
  METHODS
  Broadly following EORTC Quality of Life Group (QLG) guidelines for developing questionnaires, the study comprised three phases. Phase I identified relevant issues and obtained the views of palliative care patients and professionals about those issues. Phase II operationalised issues into items. Phase III pilot-tested those items with palliative care patients. Amendments to the guidelines included an intermediate Phase IIIa, and debriefing questions specific to the measure.
  
  
  METHODS
  Phase III pilot-testing recruited 113 people with incurable cancer from hospitals and hospices in six European countries and Japan.
  
  
  RESULTS
  A provisional 36-item measure ready for Phase IV field-testing, the EORTC QLQ-SWB36, has been developed. Careful attention to translation and simultaneous development in multiple languages means items are acceptable and consistent between different countries and languages. Phase III data from 113 patients in seven countries show that the items are comprehensible across languages and cultures. Phase III patient participants in several countries used the measure as a starting point for discussing the issues it addresses.
  
  
  CONCLUSIONS
  The EORTC QLG's rigorous cross-cultural development process ensures that the EORTC QLQ-SWB36 identifies key issues for spiritual wellbeing in multiple cultural contexts, and that items are comprehensible and consistent across languages. Some cross-cultural differences were observed, but data were insufficient to enable generalisation. Phase IV field-testing will investigate these differences further.
authors: School of Health Sciences and Social Care, Brunel University, UK. bella.vivat@brunel.ac.uk
authors: Bella
authors: B
authors: Vivat
authors: Teresa
authors: T
authors: Young
authors: Fabio
authors: F
authors: Efficace
authors: Valgerđur
authors: V
authors: Sigurđadóttir
authors: Juan Ignacio
authors: JI
authors: Arraras
authors: Gudlaug Helga
authors: GH
authors: Åsgeirsdóttir
authors: Anne
authors: A
authors: Brédart
authors: Anna
authors: A
authors: Costantini
authors: Kunihiko
authors: K
authors: Kobayashi
authors: Susanne
authors: S
authors: Singer
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D003431:Cross-Cultural Comparison; D003466:Cultural Characteristics; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000523:psychology*; D010166:Palliative Care / Q000379:methods*; D010865:Pilot Projects; D011594:Psychometrics / Q000295:instrumentation*; D011788:Quality of Life / Q000523:psychology*; D013140:Spiritualism; D011795:Surveys and Questionnaires / Q000592:standards*