Inflammatory breast cancer (IBC) is a rare and aggressive type of locally advanced breast cancer (LABC) characterized by diffuse erythema and edema (or peau d’orange) of the breast [1, 2]. The IBC diagnosis is primarily clinical but also requires pathological confirmation of cancer. It can be confused with other types of neglected LABC but is differentiated by the rapid onset of symptoms.

The definition of IBC according to the seventh edition of the American Joint Committee on Cancer (AJCC) Cancer Staging Manual has three requirements: (A) the presence of diffuse erythema, edema, and peau d’orange over at least one-third of the breast, and (B) rapid onset of symptoms, and; (C) a pathologic diagnosis of breast cancer. There is frequently no underlying tumor mass. Previous AJCC definitions of IBC have included variable proportions of breast involvement—from no specified proportion requirement (AJCC 5th edition) [3] to the “majority” of the breast (AJCC 6th edition) [4] to one-third of the breast (AJCC 7th edition) [5]. Some countries have used different definitions of IBC, such as “pousee evolutive,” which is used in Tunisia [6].

There is an urgent need to better identify this condition in population-based cancer registries around the world. In the surveillance, epidemiology and end results (SEER) database in the United States, IBC is defined by a combination of histology, stage, and Extent of Disease (EOD) codes, which accommodate changes in the AJCC definition over time. These codes are not routinely used in other population-based cancer registries around the world, including those in North Africa. Therefore, IBC is not routinely identified in most population-based cancer registries. Accurate registration of IBC in population-based registries requires both a set of codes to capture the clinical characteristics as well as complete and accurate recording of clinical signs and symptoms of IBC in routine medical records (MRs) and accommodating for different definitions to facilitate comparisons from different time periods and locations.

To our knowledge, there have been no previous studies in which the signs of IBC noted in medical records have been compared to signs/symptoms systematically recorded at the time of diagnosis by clinicians who have been specifically trained in the diagnosis of IBC (i.e., a gold standard). Therefore, this study aimed to evaluate the validity of medical records from the Nile Delta region of Egypt in the identification of IBC in the context of an ongoing case–control study.

Our results suggest that there are serious limitations in the recording of signs and symptoms needed for the diagnosis of inflammatory breast cancer according to AJCC [5, 7] criteria in the medical records of the Tanta Cancer Institute and the Gharbiah Cancer Society in Tanta, Egypt. This was particularly true for erythema and for the extent and duration of all three signs (erythema, peau d’orange, and increase in breast size).

There may be a variety of reasons why examining physicians would fail to report all IBC signs and symptoms in patient medical records. IBC is a rare type of breast cancer and is not well understood by physicians in many places. For example, some physicians lack education regarding IBC diagnoses, as is the case among primary care physicians in Egypt and Tunisia [8]. This could be due to a paucity of emphasis on oncology during medical school, the fragmentation of cancer-focused education at both the undergraduate and graduate level, and the absence of continuing medical education post-graduation [9, 10].

Previous studies have found that physicians often fail to obtain or access continuing medical education (CME) modules, especially in developing countries, which thereby affects their knowledge regarding new cancer epidemiology and accurate cancer diagnosis and management [8, 11–13]. CME is necessary to keep health professionals up to date as the IBC definition evolves. There also needs to be increased emphasis on the standardization of these cancer-focused education programs across institutions.

Strengths of this study included the use of a separate, ongoing case–control study as a gold standard. The case–control study was conducted by IBC-trained physicians who recruited patients based on a clinical exam and recorded thorough information on the signs and symptoms present using standardized forms, allowing for comparison with medical record data. Limitations of this study include the relatively small number of IBC cases and variability in diagnoses due to the number of physicians examining patients (N = 19, data not shown).

This study revealed deficits in the information recorded on medical records needed to identify IBC cases. Deficient medical record information could negatively impact the diagnosis and treatment for IBC patients. Furthermore, deficient medical record information could affect the perceived prevalence of IBC and limit the ability to record IBC cases in cancer registries, which would thereby hinder the study of its management and prevention epidemiology. Our findings support the need for a universal definition of IBC to help improve the reliability of medical records for registry-based research or ways to accommodate for multiple definitions to facilitate IBC research in developing countries. Future studies should compare other Egyptian institutions as well as neighboring developing countries to determine the most appropriate method of maintaining medical records for reliably identifying IBC cases. Additionally, improvements in professional education regarding the symptoms and clinical characteristics of IBC would allow future professionals to correctly diagnose true IBC cases as such and stay up to date upon diagnostic criteria and state of the art research surrounding IBC. International registries should also explore a standardized procedure for identifying and registering IBC cases.