Of all mastectomy patients, 90% will use an external prosthesis either permanently or while waiting for breast reconstruction. The prosthetic standard of care uses an external stock prosthesis that is purchased “off the shelf”, whereas most other types of prostheses (Leg, arm, teeth, facial) are custom made to suit an individual’s needs. Given the number of women who have expressed dissatisfaction regarding commercial manufactured external breast prostheses, there is a strong potential for a new standard of care that could provide a more comfortable fit and natural appearance without the need to undergo additional surgery. The advent of new materials and the availability of clinical anaplastologists who have developed new techniques make the actual production in a custom approach possible. However, there was a need to determine both patient demand and perceived value of a custom prosthesis before recommending a full-service program and an increased cost to the patient. In 2006 we conducted a clinical trial to look at the feasibility, demand and perceived patient value in providing a service for custom-made breast prostheses. The results of that trial were just recently published in Current Oncology.
The study was initially set up as a cohort trial to allow women to select the treatment option of their choice, either a stock or custom prosthesis. The women were interviewed both before treatment selection and afterwards about their experiences with each device. The demand for a custom breast prosthetic service was very quickly answered when the first 40 women enrolled in our trial all selected the custom option. Therefore the study design was changed to a before and after study in order to seek out a separate group of women who could then tell us about their experiences with stock prostheses. The women who reported on their experiences with the custom prosthesis each had had previous experiences with a conventional approach and were allowed to be in both groups. However, some of the women in the stock prosthetic group did not receive a custom prosthesis.
Overall, the women who had experienced wearing the new custom breast prosthesis responded that many of the issues they had experienced while wearing a conventional prosthesis were markedly improved. They found the custom prosthesis fairly comfortable and light in weight (“I like the lightness of it—it feels like it’s me”), better fitting with clothing (“it fits so well that I can hardly believe I am wearing it”), and natural looking (“I do not have to think about how it looks. It is so realistic”). Women talked about the psychological benefit of the custom prosthesis: it helped them feel less like a “victim” and more “normal.” In being assessed and fitted for the new prosthesis, women found that they were well informed about the use of the prosthesis and its care. Whereas the qualitative interview data provided a strong case in support of the new device, a comparison of the standardized quality-of-life and patient satisfaction test scores showed no significant difference between the women wearing the conventional prosthesis and the women wearing the custom prosthesis.
Feedback from the women supports the idea of sharing information in writing about prostheses and reconstructive surgery early in the process of telling patients about treatment options and effects. Although they may not read the information at the time of their diagnosis, they would have the information readily available for future reference. Study participants reported little consistency in what they were told about prostheses services. However, once they were part of the trial, they reported that their access to prosthesis information was very satisfactory.
Although there were suggestions for improvement, the women were, in general, satisfied with the construction of their prosthesis, and they agreed that the new approach addressed the shortfalls of conventional stock prostheses. They were also satisfied with the quality of the service they received. Most women felt that their prosthesis was comfortable, lightweight, and stable while in place, and that the staff was friendly and professional.
At the start of the study, a custom breast prosthesis was partially funded by the Assistive Devices Program, leaving the patient responsible for 25% of the total fee prescribed by the Ontario government. However, the funding structure for breast prostheses was changed to a grant system that provides women with just $195 towards the cost of either type of prosthesis. The major deterrent for declining participation in the study was the increase in cost because of lower government reimbursement (11 women). Most women spoke about the need to have more financially accessible options available to them after a mastectomy. At the conclusion of the trial we petitioned the Assistive Devices Program to relist the custom breast prosthesis under the former pricing system but our efforts to gain more funding for patients was declined. Hopefully with time this will change as issues related to cost and access to care should be addressed, because they relate both to conventional and to custom prosthetic care. Government assistance would most likely be needed to make such a service universally accessible. It is often easier to have a breast implant procedure covered through a national health care program or private insurance than it is to have a breast prosthesis made. Women who elect—for either personal or health reasons—not to have additional surgery to restore their breast contour are therefore faced with the burden of having to pay out-of-pocket for a prosthesisbut do not have to pay for reconstruction. It is evident that gaps exist in current breast prosthesis services for women when it comes to accessibility, equity, quality, and financial resources.
The willingness of women to pay for a prosthesis and the qualitative results from the present study demonstrates that there is demand for a custom approach to treatment. If both qualitative and quantitative methods had not been applied to this initial exploration of women’s experiences with custom breast prostheses, the essence of the perceived value of the custom prosthesis would have been lost. Quantitative measures suggest that there is no difference between custom and conventional breast prostheses, but the qualitative data captured in this study provide a sense of aspects of care that a standardized outcome measure cannot capture. Because of the findings from our study and our commitment to patient focused care the Sunnybrook Odette Cancer Centre is now offering a custom breast prosthetic service.
Todd Kubon is an Anaplastologist in the Craniofacial Prosthetic Unit (CPU) at the Sunnybrook Odette Cancer Centre and Research Fellow at the Hospital for Sick Children, Toronto, Ontario, Canada. Todd received his Bachelor of Arts Degree in Art and Biology from Tulane University in New Orleans, LA and a Masters Degree in Biomedical Visualization from the University of Illinois at Chicago in 1997. At the CPU Todd’s duties include patient care, education, and research. Todd also serves on the Health Care Advisory Board for AboutFace International and was named the recipient of the 2004 Professional Community Service Award. Todd’s research interests address psychosocial outcomes in prosthetic rehabilitation. Todd has published and lectured internationally on the discipline of Anaplastology and twice has won the Judson C. Hickey Scientific Writing Competition sponsored by the Journal of Prosthetic Dentistry. Todd is a member of the Assistive Devices Program Standing Committee for the Ministry of Health, Ontario, Canada and is the current President on the Board for Certification in Clinical Anaplastology.