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

a b s t r a c tPurpose: 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 ¼ 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 ¼ 8/10). The expert-survey revealed an overall acceptable CVI (0.82), three itemseon personal control, treatment control and causal representationeyielded low CVIs (<.78). The CFA confirmed that the BIPQ fits the underlying construct, the Common-Sense Model (CSM) (c 2 (df) ¼ 956.321, p ¼ 0.00). The HADS-scores correlated strongly with the item emotional representation (r ¼ 0.648; r ¼ 0.656). Conclusion: 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.

Mediating effect of ill perception on the relationship between social constraints and fear of cancer recurrence among adolescent and young adult survivors who underwent hematopoietic stem cell transplantation

“…Again, results of the present study revealed that the total score based on the BIPQ scale was 42.84 ​± ​7.20, which was slightly higher than that reported by Valenta et al. 49 who used the same assessment tool but without age stratification. In addition, our results showed that male AYA-HSCT survivors and those with a high family income exhibited lower IP levels, indicating that they had lower negative perception of the disease.…”

“…Results from several studies have demonstrated that apperception of a greater sense of control and fewer consequences of one's illness are linked to better social, emotional, functional health, less distress, anxiety, and depression among HSCT recipients. 49 , 50 Therefore, patients with lower income levels should be concerned about whether they have excessive negative disease perception. In addition, results indicated that IP was not only positively correlated with FCR but was also an independent predictor of FCR for AYA-HSCT survivors, consistent with the findings of previous studies that focused on patients with breast cancer, bladder cancer, or lung cancer.…”

Interventions that may increase control at the end of life in persons with dementia: the cross-cultural CONT-END acceptability study protocol and pilot-testing

“…Illness perception also refers to the dementia. The person with dementia is asked to rate four selected items of Brief Illness Perception Questionnaire (IPQ-B) [ 76 – 78 ] that are relevant to our research questions. The four items consist of one item from the Consequence, Personal Control, Illness concern and Emotional representation dimensions.…”

The Impact of Health Policy on Patients’ Awareness of the Risks Associated with Obesity: An International Multicenter Study in Poland and Germany

“…The patient’s illness perception was evaluated using Polish and German versions of the standardized Brief Illness Perception Questionnaire (B-IPQ). 17 , 18 The B-IPQ consists of nine items rated on a scale from 0 (minimum) to 10 (maximum). With the Brief IPQ, it is possible to estimate illness perception in large-scale projects and repeated measures study designs.…”