Re-examining content validity of the BREAST-Q more than a decade later to determine relevance and comprehensiveness

Purpose The BREAST-Q is the most used patient-reported outcome measure (PROM) in breast cancer surgery. The purposes of this study were to re-examine the content validity of BREAST-Q cancer modules (mastectomy, lumpectomy and reconstruction) and to determine the need for new scales. Methods Interviews were conducted with women with breast cancer (Stage 0–4, any treatment), and were audio-recorded and transcribed verbatim. Deductive (based on original BREAST-Q conceptual framework) and inductive (new codes from the data) content analysis approaches were used to analyze the data. The number of codes that mapped to BREAST-Q were recorded. Results Dataset included 3948 codes from 58 participants. Most of the breast ( n = 659, 96%) and all psychosocial ( n = 127, 100%), sexual ( n = 179, 100%) and radiation-related ( n = 79, 100%) codes mapped to BREAST-Q Satisfaction with Breast, Psychosocial Wellbeing, Sexual Wellbeing and Adverse Effects of Radiation scales, respectively. For the physical wellbeing codes ( n = 939) for breast/chest and arm, 34% ( n = 321) mapped to the Physical Wellbeing-Chest scale. Most of the abdomen codes ( n = 311) mapped to Satisfaction with Abdomen ( n = 90, 76%) and Physical Wellbeing-Abdomen ( n = 171, 89%) scales. Codes that did not map ( n = 697, 30%) covered breast sensation and lymphedema. Concerns related to fatigue, cancer worry, and work impact were most reported and did not map to BREAST-Q. Conclusion The BREAST-Q, which was developed using extensive patient input more than a decade ago, is still relevant. To ensure the BREAST-Q remains comprehensive, new scales for upper extremity lymphedema, breast sensation, fatigue, cancer worry, and work impact were developed.