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body image, defibrillators, implantable, patient-reported outcomes, questionnaire design



  1. Frydensberg, Vivi Skibdal MSc
  2. Stromberg, Anna PhD
  3. Johansen, Jens Brock MD, PhD
  4. Pedersen, Susanne S. PhD


Background: The implantable cardioverter defibrillator (ICD) is the first-line treatment for the prevention of sudden cardiac death. Although most ICD recipients adapt well to living with the device, some struggle with ICD-related body image concerns (BICs). Because of lack of standardized questionnaires to assess BICs, we do not know the prevalence.


Objective: The aim of this study was to develop a questionnaire that assesses self-reported ICD-related BICs.


Methods: Using a sequential, qualitative multimethod approach, we developed the ICD-BIC questionnaire (ICD-BICQ) based on (1) themes from a scoping review on BICs in ICD recipients, (2) cognitive interviews with ICD recipients to evaluate the validity of items and to ascertain whether items were missing, and (3) input from healthcare professionals. A conceptual framework was created containing 4 general dimensions: (1) assessment, (2) behavior, (3) body perception, and (4) emotions.


Results: Implantable cardioverter defibrillator recipients (n = 8, 2 women and 6 men; age, 40-78 years), 2 specialists in questionnaire development, and healthcare professionals specialized in ICD treatment evaluated the questionnaire. After no new items or new dimensions emerged from the cognitive interviews, the final version 7 of the ICD-BICQ consisted of 39 items tapping into (1) assessment (n = 2), (2) behavior (n = 13), (3) body perception (n = 16), and emotions (n = 8). Items were assessed on a 5-point Likert-type scale.


Conclusion: Using patient and healthcare professionals' involvement, we developed the 39-item ICD-BICQ to measure the prevalence of BICs in ICD recipients. The factor structure, construct validity, psychometric properties, and a clinically relevant cutoff for the ICD-BICQ will be evaluated in a quantitative study of ICD recipients.