Abstract Body (Do not enter title and authors here): Background: Given the importance of understanding the impact of treatment on patients’ symptoms, function, and quality of life, the Kansas City Cardiomyopathy Questionnaire (KCCQ) has been used as an endpoint for trials in Hypertrophic cardiomyopathy (HCM). The KCCQ has been studied in heart diseases, but it has not been extensively psychometrically assessed in HCM. How well the KCCQ captures patients’ lived experiences and how they feel about the tool are incompletely understood. Thus, understanding how the KCCQ functions in those with HCM is critically needed.
Methods: Focus groups of individuals with HCM, both with and without obstruction and irrespective of genotype, were conducted using a standardized interview guide developed from a multidisciplinary team that elicited patients’ perspectives of their symptoms, limitations, and determinants of quality of life associated with HCM. The guide also included the KCCQ-23 item in order to perform cognitive debriefing to understand how patients felt about the tool. Transcripts were reviewed and coded by 3 separate scientists to identify key themes, achieve consensus on key concepts, and to assure saturation.
Results: Over 4 groups of 4-9 participants each, many reported concerns that were not captured by the KCCQ, but content saturation was achieved with no new concepts in the final focus group. Additional symptoms of importance not included in the KCCQ were chest pain, dizziness, lightheadedness, palpitations, and pre-syncope, with provoking factors being bending over, meals, and dehydration. Quality of life was impacted by participants’ fear of symptoms and clinical events. The KCCQ, while relevant and understandable to participants, seemed to incompletely reflect participants’ experiences - particularly when considering symptoms other than fatigue and shortness of breath. Some felt swelling and orthopnea were less relevant, but without a clear consensus. “Heart failure” was felt by some to be confusing or upsetting. Lastly, questions regarding the recall period were raised given variability in symptoms.
Conclusions: Considerations to supplement the KCCQ with additional to modify the introduction, include other symptoms, variability items, and omitting the term ‘heart failure’ may improve its content validity for patients with HCM. Further work is planned to quantify these concerns are underway prior to developing a supplement.