Facial plastic surgeon John Rhee, MD, MPH, sees many patients with nonmelanoma skin cancer (NMSC). Struck by his patients’ varied responses to the cancer and the defects it caused, he noticed that some people minimized it, whereas others thought it was the worst experience of their lives.
Wondering why, in 2001 he decided to search the literature. However, there was very little written about this most common cancer of humankind and how people feel about it, he said.
His colleague, Marcy Neuburg, MD, succinctly pointed out that focusing on quality of life is important to patients because it reminds us that it isn’t necessarily how long you live, but how well you live.
Assuming there must be a validated tool to measure quality of life (QOL) for patients with NMSC, Dr. Rhee looked at existing quality measures from disease-specific to more generic sense of health general questionnaires, and found nothing specific to NMSC.
So, I used a skin index general questionnaire, as well as a generic cancer questionnaire. But, my patients said the questions didn’t relate to them. They told me there was little bearing on how they felt about their cancer and treatment results, he noted.
Thus began a five-year quest to develop a NMSC disease-specific quality of life predictor and measurement tool. Over the years, Dr. Rhee and his team at the Medical College of Wisconsin in Milwaukee tested existing tools, developed their own NMSC-specific questionnaire, and reported its usage in several papers, including Dermatologic Surgery, April 2004; Laryngoscope, July 2005; Dermatologic Surgery, July 2006; Archives of Facial Plastic Surgery, September/October 2006; and most recently, Laryngoscope, March 2007.
I applaud Dr. Rhee for working on this, said Shan R. Baker, MD, President of the American Board of Facial Plastic and Reconstructive Surgery and a professor at the University of Michigan Health System in Ann Arbor. There is more and more emphasis on outcomes research. If you can develop a reliable instrument to measure quality of life, then you can use that to assess outcomes. Right now, we don’t have a good way to assess and compare outcomes in treating nonmelanoma skin cancer.
The importance of a valid quality of life measurement was also noted by Peter Hilger, MD, President of the American Academy of Facial Plastic and Reconstructive Surgery and a facial plastic surgeon in Minneapolis.
It’s the trend of the future because the government has instituted pay-for-performance standards and we’re going to have to demonstrate quality outcomes in order to get reimbursed for what we’re doing, he said. We know there’s a big interplay between how you feel about yourself and how you function in the world.
Dr. Hilger added that there’s also the concept of maintenance of certification. Certifying boards are focusing on improving outcomes in your practice and being able to demonstrate this for recertification. A correlation to that is that over the next couple of years, states are going to a maintenance of licensure program that will use some of the same criteria we use for certification.
While the trend to improve and measure quality of care has been championed in recent years by the government, payers, providers, and patients, some surgeons may see Dr. Rhee’s Skin Cancer Index as promising but not yet validated.
I can see how it has some application in the future, but these are very preliminary findings, said Ira D. Papel, MD, Associate Professor at Johns Hopkins University and a member of the Facial Plastic Surgicenter in Pikesville, MD.
Noting that the purpose of the index is to develop normal values over time, Dr. Papel said that the researchers need to survey more than just a couple hundred people. This is something that has to be done over several thousand people over a lifetime. And then, when these values are developed, we may see new patients who fall outside of those normative values and may need some extra help.
Dr. Rhee said that he agrees with Dr. Papel in his assessment that this is just the beginning. We validated the instrument on a select subgroup of patients with NMSC. It is up to the larger scientific community to test it on other subgroups with NMSC. Though the Skin Cancer Index is a psychometrically validated QOL instrument, there is still a long way to go in terms of accumulating normative data and studying the breadth of the disease and its impact on patients.
For example, he added, we are using the Skin Cancer Index on a subgroup of patients with NMSC who are immunosuppressed due to previous solid organ transplantation. These patients have much more disease burden and potentially more serious consequences of the disease in terms of morbidity and mortality. It will be interesting to see how the index scores compare in this subgroup of higher-risk patients.
In the March 2007 issue of Laryngoscope, the researchers further explain their scoring system and describe how the preoperative responses of patients differed from their feelings postoperatively.
The Skin Cancer Index can be used in a number of different ways, Dr. Neuburg said. It can demonstrate whether a given intervention affects quality of life. And it can be used to compare modalities that have similar cure rates. Perhaps one has a better quality of life measure than the other. When looking at skin cancer prevention, the index can be used to measure improvement, or lack thereof, in quality of life.
Development of the Index
The Medical College of Wisconsin research team began the development of the Skin Cancer Index in 2001 with a survey of 20 NMSC patients and six health care providers specializing in their care. With 52 additional survey participants, the index questions were rated in terms of their importance to quality of life. Data analysts evaluated the tool in terms of data quality, item variability, internal consistency, and range and skewness of scale scores on aggregation and floor and ceiling effects.
The first questionnaire, reported in Laryngoscope in July 2005, included 36 distinct items, representing six domains: emotional, appearance, work/financial, lifestyle/recreation, social/family, and physical/functioning.
In that paper, the authors noted that information in regard to differing illness perceptions will help clinicians to target at-risk groups in terms of perioperative counseling.
A little more than a year later, the index described in the September/October 2006 issue of Archives of Facial Plastic Surgery had been refined following its testing with 211 patients. The Skin Cancer Index now included 15 items in three domains-emotional, social, and appearance. The authors noted that the appearance subscale appears to capture the issues of disfigurement, scarring and self-imaging perceptions, whereas the emotional subscale appears to focus more on issues related to the clinical course of the cancer.
Among the items rated by patients were worries about the cancer spreading, concern about scarring, frustration with recovery time, and embarrassment about skin cancer.
Scores reflected the clinical burden of disease, the perception of illness, and a way to objectify the impact on the patient, Dr. Rhee said.
With the recent paper in Laryngoscope and a presentation to the Triological Society, Dr. Rhee and his colleagues discussed some of the demographic and clinical factors that predicted lower QOL scores. These included female gender and skin cancer on the lips. Noting that these make intuitive sense, Dr. Rhee said the purpose of the paper was to validate these.
For the future, Dr. Rhee noted that a real horizon in skin cancer management is nonsurgical therapy. We’ll be treating more and more skin cancer with topicals. Surgery will be for salvage and only used if the first line of treatment, the topicals, failed.
With new treatments such as topicals, the Skin Cancer Index becomes an especially valuable tool for comparisons. Researchers will compare multiple quality of life issues such as treatment length and appearance. Does it take six weeks or six months? Does it leave a scar?
We’ll be able to compare not only the final outcome, but also how the treatment itself affects patients, Dr. Rhee said.
©2007 The Triological Society