Increasingly more PROM research
In health services research, quality management and in the evaluation of clinical practice, traditional outcomes such as morbidity or mortality are increasingly associated with patient-centered practice. One of the most prominent of these methods, especially for measuring health-related quality of life (HRQoL) and patient satisfaction, are patient-reported outcome measures (PROMs). Such scientifically validated questionnaires allow quantification of the inherently subjective views and problems patients encounter on a daily basis.
As patient surveys are easy to conduct and evaluate, PROMs are increasingly used in research and clinical practice. In line with this trend, new players are making efforts to develop their own questionnaires. Nevertheless, some particularly promising instruments have emerged in the midst of this competitive, developing landscape. One of them is the modular BREAST-Q PROM.1
BREAST-Q – individual question modules about the breast
With earlier detection rates thanks to enhanced screenings in conjunction with developing therapeutics more and more patients with breast cancer are achieving better overall survival.2 With long-term disease-free survival being achieved in 80 – 90% of cases.3 Such positive outcomes highlight how far cancer care has come, but with such numbers of patients living longer measuring their perceived health-related quality of life is crucial.
The BREAST-Q is a breast surgery specific PROM that was developed in adherence with international guidelines for PRO instruments to assess patients’ satisfaction, HRQOL, and experience of care which was developed in 2009.4
Overall, this is a PROM that measures HRQol and patient satisfaction in the context of breast surgery (mastectomy, reconstruction, breast conservation, augmentation, reduction).5 It is important to note that breast cancer and its associated medical interventions can have profound effects on the patient – physically and psychologically Moreover, post-surgical aesthetic and functional outcomes are very individualistic.6 Hence measuring this and evaluating it is a standardized way to learn about patients’ needs and how to improve future surgical procedures as well as psychological aftercare for optimum health is necessary.
What makes the BREAST-Q PROM an important inclusion in breast cancer care is the score’s consideration of psychosocial, sexual and emotional aspects of undergoing surgical interventions, all of which are not immediate concerns in oncology treatment regimes, but have an impact on patients’ everyday lives. The diverse nature of breast cancer surgical interventions has lead to the modular, procedure-specific breakdowns of the PROM for example the breast-conserving therapy (BCT) module.7, 8
With such scoring being based on evidence-based population data, the modular structure of BREAST-Q enables care teams to query therapy-specific characteristics illuminated by the PROM.6 Such modules can be used individually or combined. Currently, the BREAST-Q includes augmentation, reduction (mastopexy) and breast cancer-related modules. Moreover, this PROM is continuing to evolve with time and experience as an additional, so-called “health utility module” is in development. The included questions are arranged according to clinical relevance and a score from 0 to 100 is calculated from the answers, independent of the type and number of modules.6 For ease of use, there are tables for this purpose with an additional online programme.9
Studies using BREAST-Q have shown, among other things, lower morbidity and enhanced outcomes in autologous breast reconstruction (using a patient’s own tissue from another place on the body) compared to reconstruction with implants. With regard to the latter, another study demonstrated a higher patient satisfaction with silicone implants compared to saline-filled implant cushions.6 The result of a study by Ho et al. revealed a high level of satisfaction with the surgeons and the information prior to breast surgery from the patient’s vantage point seemingly increased the probability of overall satisfaction with the outcomes.10
Breast-Q implementable in large cohorts
Meanwhile, there are several large-scale studies and surveys that use the BREAST-Q. Atisha et al., conducted a study using the Love/Avon Army of Women programme. The cross-sectional study surveyed women who had previously undergone surgery for breast cancer to compare different reconstructive procedures and how satisfaction changes over time for specific patient populations. A total of 7619 patients completed the BREAST-Q, electronically with an 82% response rate. Women who underwent autologous tissue reconstruction reported the highest breast satisfaction, whereas those who underwent a mastectomy without reconstruction reported the lowest.11
Other initiatives such as the Mastectomy Reconstruction Outcomes Consortium (MROC) study demonstrated a good scalability of the PROMs tool also.12 -14 Additionally, important opinion leaders like the International Consortium for Health Outcomes Measurement (ICHOM) made the BREAST-Q part of their Breast Cancer Standard PROM Set highlighting that the insights derived from BREAST-Q usage are worth including in patient care.15
Continuing strong demand
Outcomes in oncoplastic breast surgery have so far mainly focused on treatment-specific outcomes such as complications or photographic analysis.6 Whilst BREAST-Q can measure the associated HRQoL post-operatively, shortcomings have also been observed. Eltahir et al, reported that the BREAST-Q in combination with the aesthetic rating Strasser score only partially reflected women’s satisfaction with their reconstruction surgery.16 Unfortunately, however, there are currently no better tools for understanding women’s preferences or needs. And so, prospective research is therefore needed to enhance such tools for cosmetic outcomes.
Despite this, BREAST-Q is regarded as being a reliable and valid assessment of HRQoL for post-op patients.8 With thanks to the ever developing world of digitisation, new opportunities are also being made possible. Apps, e-mail surveys and electronic documentation make it possible to efficiently integrate the often still paper-based and personnel-intensive PROM survey into clinical routine. Whilst the validity of the BREAST-Q is of paramount importance, the way in which it is used in the healthcare setting should also be considered. With the integration of digital infrastructures offering such PROM sets into clinics’ own IT systems it can aid augmented feedback-loops, time efficiency and connectivity between care teams and patients. This could make it possible to take patient-centred objective evaluations of therapies and shared decision making a step further for the future of advanced care practices.
Ultimately however, PROMs including the BREAST-Q are aids to the patient journey and the focus should always be the preferences and experiences of the patients themselves as they are the true arbiters of their own health and postoperative outcomes. Using PROMs as an assistant to establish the patient’s true perspective on their treatment to inform better practices for the future is at the core of their use.
For more information on how the outcome measurement platform heartbeat ONE supports the implementation of the BREAST-Q and other measurements please reach out to our team.