title: Perception of late effects among long-term survivors after haematopoietic stem cell transplantation: Descriptive analysis and validation of the Brief Illness Perception Questionnaire. A sub-study of the PROVIVO study.
abstract: OBJECTIVE
  To give a first description of the perception of late effects among long-term survivors after Allogeneic Haematopoietic Stem Cell Transplantation (HSCT) and to validate the German Brief Illness Perception Questionnaire (BIPQ).
  
  
  METHODS
  This is a secondary analysis of data from the cross-sectional, mixed-method PROVIVO study, which included 376 survivors from two Swiss HSCT-centres. First, we analysed the sample characteristics and the distribution for each BIPQ item. Secondly, we tested three validity types following the American Educational Research Association (AERA)Standards: content validity indices (CVIs) were assessed based on an expert survey (n = 9). A confirmatory factor analysis (CFA) explored the internal structure, and correlations tested the validity in relations to other variables including data from the Hospital Anxiety and Depression Scale (HADS), the number and burden of late effects and clinical variables.
  
  
  RESULTS
  In total, 319 HSCT recipients returned completed BIPQs. For this sample, the most feared threat for post-transplant life was long lasting late effects (median = 8/10). The expert-survey revealed an overall acceptable CVI (0.82), three items-on personal control, treatment control and causal representation-yielded low CVIs (<.78). The CFA confirmed that the BIPQ fits the underlying construct, the Common-Sense Model (CSM) (χ2(df) = 956.321, p = 0.00). The HADS-scores correlated strongly with the item emotional representation (r = 0.648; r = 0.656).
  
  
  CONCLUSIONS
  According to its overall content validity, the German BIPQ is a promising instrument to gain deeper insights into patients' perceptions of HSCT late effects. However, as three items revealed potential problems, improvements and adaptions in translation are therefore required. Following these revisions, validity evidence should be re-examined through an in-depth patient survey.
authors.affiliation: Nursing Science (INS), Department Public Health (DPH), University of Basel, Switzerland; Department of Haematology, University Hospital Basel, Switzerland.
authors.forename: Sabine
authors.initials: S
authors.lastname: Valenta
authors.affiliation: Nursing Science (INS), Department Public Health (DPH), University of Basel, Switzerland; Centre for Health Services and Nursing Research, KU Leuven, Belgium.
authors.forename: Sabina
authors.initials: S
authors.lastname: De Geest
authors.affiliation: Nursing Science (INS), Department Public Health (DPH), University of Basel, Switzerland.
authors.forename: Katharina
authors.initials: K
authors.lastname: Fierz
authors.affiliation: Nursing Science (INS), Department Public Health (DPH), University of Basel, Switzerland; Department of Abdomen-Metabolism, University Hospital Zurich, Switzerland.
authors.forename: Sonja
authors.initials: S
authors.lastname: Beckmann
authors.affiliation: Department of Haematology, University Hospital Basel, Switzerland.
authors.forename: Jörg
authors.initials: J
authors.lastname: Halter
authors.affiliation: Department of Haematology, University Hospital Zurich, Switzerland.
authors.forename: Urs
authors.initials: U
authors.lastname: Schanz
authors.affiliation: Department of Haematology, University Hospital Basel, Switzerland; Department of Haematology, University Hospital Zurich, Switzerland.
authors.forename: Gayathri
authors.initials: G
authors.lastname: Nair
authors.affiliation: Department of Anaesthesiology / Pain Service, University Hospital Basel, Switzerland. Electronic address: Monika.Kirsch@usb.ch.
authors.forename: Monika
authors.initials: M
authors.lastname: Kirsch
mesh_terms: D000328:Adult; D000368:Aged; D064591:Allografts; D003430:Cross-Sectional Studies; D004644:Emotions; D005163:Factor Analysis, Statistical; D005260:Female; D005858:Germany; D018380:Hematopoietic Stem Cell Transplantation / Q000523:psychology*; D006801:Humans; D008297:Male; D008875:Middle Aged; D010465:Perception; D011795:Surveys and Questionnaires; D017741:Survivors / Q000523:psychology*; D013557:Switzerland; D014177:Translations; D055815:Young Adult
keywords: AERA-Standards; German Brief Illness Perception Questionnaire; Haematopoietic stem cell transplantation; Late effects; Long-term survivorship; PROVIVO study; Validity