Patients with multiple nevi are at greater risk for developing melanoma but may be unable to assess their skin accurately without an effective tool. At Memorial Sloan-Kettering Cancer Center, the standard of practice has been to use a patient educational brochure teaching high-risk patients mole mapping, a procedure of recording moles by drawing them. The photo print book offers patients an improved way of performing skin self-examination (SSE) in comparison to drawing. The purpose of this study was to determine patient experiences through patient interview and to learn ways to increase patient compliance and understanding of monthly SSE performance using a photo book.
There are many factors that affect the adoption of new technologies in physician practice and the health care system. Few studies have specifically addressed the adoption of new technologies for the early detection of melanoma in the dermatology setting (Oliveria et al., 2004). One study was conducted to understand the value of photography for patients and physicians (Hanrahan, Menzies, D'Este, Plummer, & Hersey, 2000). In this study, the acceptability of photography as an aid to skin examination was determined. Acceptability was determined by a simple measure of participation rates. Results suggested acceptability was high, with a 51% participation rate (Hanrahan et al., 2000). Another study (Nehal et al., 2002) assessed the reasons why physicians use baseline photography and dermoscopy for patients with pigmented lesions. Questionnaires were mailed to physicians in dermatology residency programs (n = 83, response rate 79%). The main reasons why physicians recommend and use photography or dermoscopy include that it helps improve early detection of melanoma, improves recordkeeping and documentation, results in fewer biopsies, and reduces cost and anxiety (Nehal et al., 2002).
It is important to consider the cultural factors that may affect the implementation of new technologies in a dermatology setting, as well as patient satisfaction and patient/physician/nurse communication. However, it is also important to consider the nurse's positive supportive nonjudgmental attitude toward patients, especially when they are trying to be truthful with respect to skin self-examination (SSE) performance using their photo books. If a patient knows he has been noncompliant, a calm reassuring manner with positive reinforcement from the nurse can have a significant difference in influencing his SSE performance.
Attempts to improve the diagnostic accuracy for melanoma are designed to increase diagnostic sensitivity while decreasing unnecessary biopsies. These efforts have led to the development of new noninvasive, in vivo techniques such as total cutaneous photography (Maguire-Eisen, 2003; Marghoob et al., 2003), dermoscopy, computerized image analysis systems, and confocal scanning laser microscopy (CSLM) (Marghoob et al., 2003). In CSLM, a confocal microscope is made up of a point source of light that illuminates a small point within the skin. The illuminated point is imaged onto a detector through a small aperture (pinhole). Because only a single small point and image are illuminated at a time through a small aperture, the detector receives light only from a single illuminated point that is in focus. Light from all other points that are either axially or laterally away from focus is rejected by the small aperture in front of the detector. The point is scanned in two dimensions to illuminate and image a plane. Thus, with a confocal microscope, the single specific plane that is in focus within the skin is imaged. Thin slices or sections are optically or noninvasively imaged. The CSLM optical section thickness is comparable to the thickness of sections thai are prepared for histology.
These techniques can help detect new and changing lesions and can help further evaluate suspicious or concerning lesions. Besides regularly examining the skin, using an individual's baseline total-cutaneous photographs during followup screening examinations is currently the only modality that can help clinicians detect new or changing lesions (Marghoob et al., 2003). In addition to professional examinations, individuals are encouraged to perform monthly SSE. As an adjunct to SSE, Memorial Sloan-Kettering Cancer Center (Memorial) has been providing patients with their own photo books. The use of photo books for monthly SSE will be examined through patient self-reports.
There are no published studies directly addressing patient subjective experiences with the use of (digital photography photo books) for self-examination. The research staff at Memorial has been using personalized photo books as an adjunct in monthly SSE in both the clinical and research settings (Oliveria et al., 2004; Phelan, Oliveria, Christos, Dusza, & Halpern, 2003). The goal for teaching patients to use their photo books for SSE on a monthly basis is to alert them to a change, whether that be in a lesion or mole's color, shape, size, or the appearance of a new mole (Oliveria et al., 2004; Phelan et al., 2003; Wolf et al., 2001). Patients are initially instructed on how to familiarize themselves with their moles. Subsequently, patients are instructed to perform SSE each month using their photo books. The goal of repetitive SSE is to increase the chances of detecting any new or changing mole(s) and to bring these to the attention of the health care provider. The importance of SSE is highlighted by the fact that a patient's observations regarding changes or symptoms in a mole/lesion are vital to earlier detection of melanoma. These changes must be taken into account by the physician, because a history of change is elicited more often in lesions that prove to be melanomas, as compared with benign lesions (66% and 30%, respectively) (Kittler et al., 1999). However, it is important to point out that most new or changing lesions are not malignant. Thus, once these "suspect" lesions have been identified they can be further evaluated by dermoscopy or biopsy if necessary.
The research staff at Memorial (Oliveria et al., 2004; Phelan et al., 2003) did not attempt to teach the patients how to diagnosis skin cancer, but did try to make them aware of the three types of skin cancers in very general, easy to understand terminology, and used a brochure with photos (Crutcher, Friedman, Sober, Greene, & Kopf, 1999, Phelan et al., 2003). This was an effort to educate, not overwhelm patients with medical-scientific information. In doing so, the research staff at Memorial hoped to give them a better understanding of their diagnosis of skin cancer and the benefits of early detection. All patients (N = 100) had baseline whole-body digital photography as part of their clinical evaluation. Half of the group (n = 51) received a teaching intervention using a model photo book with nurse instruction, and the other group (n = 49) received the teaching intervention without a photo book and agreed to use a mole-mapping brochure in the form of a diary. The second group received their photo books after 4 months. Self-administered questionnaires were provided at four intervals: baseline, post-teaching intervention, 4 months and 18 months post-baseline visit. Results suggest that the intervention was effective at increasing patient adherence with SSE, and utilizing a book as an adjunct to screening appeared to increase patient adherence to SSE performance (Oliveria et al., 2004).
In an attempt to understand and describe patient experiences, as part of a substudy, the research staff at Memorial had the opportunity during patient followup visits to assess patients' subjective experiences with photo book assisted self-examination. In total, 100 patients participated. Fifty were patients who had been in the original study described earlier. The other 50 patients were randomly chosen at their followup visits, and were not in the original study, but had previously been photographed and had their own photo books. The substudy was based on the initial study results, Skin Self-Examination in Patients at High Risk for Melanoma: A Pilot Study, done earlier that year (Phelan et al., 2003). Results from that study indicated a positive outcome in patient response to the book as a tool to aid patients in SSE. The research staff wanted to assess further patient reaction to the book. This was accomplished by eliciting patients or comments through free associations with the phrase photo book. A research nurse at Memorial asked each patient to verbalize the first thing that entered into his/her mind upon hearing the phrase. An open-ended discussion was conducted with a research nurse. The patient comments are examples of what was recorded by the research nurse, and then compiled into categories. They are in no way direct quotes, nor was every patient comment used. Many patient comments were similar in nature and overlapped. Overall, comments chosen by the research staff were felt to reflect every aspect of the study as a whole. The comments were divided into two categories: (a) patients' comments about their use of the photo book, and (b) patients' comments about the format of the photo book. Many patients made a short one or two sentence remark about the book, many repeated what others had said in their own words, while others chose to elaborate. The following comments are meant to give an overall view of the patient study comments.
Patient Comments About the Use of The Photo Book
* Well, I have many moles and consider myself at high risk for developing skin cancer and so it is very important for me to use my photo book every month.
* It is located on the shelf in my closet, but don't get me wrong, I know where it is. I don't use it once a month as I was taught, but rather periodically because I see my dermatologist every 3 months. If I wasn't on such a strict regimen seeing my dermatologist, I would probably use it more. I do use it as a reference when I see something that bothers me, I tag it with a yellow sticker and write it down so I'll remember to ask my doctor or nurse to take a closer look at it when I go for my followups. I'm finding the plastic covering causes distortion, so I remove it to see more clearly. Sometimes I even use a magnifying glass for certain areas that are hard to tell if there is a change. I wish I could have close-up photos of just those areas my doctor has pointed out so I could watch them more closely.
* I have had melanoma and I use my photo book every month and I have my husband look at my back because I can't see there.
* My photo book is something I do not use regularly, but rather as a resource. I do a monthly SSE without using my photo book, but if I see anything that concerns me, I go directly to my photo book and check it out. That's why I'm here today because I found a new spot on my elbow and I didn't see it on my photograph, so I called right away.
* I am trying to use it, but I mostly just look at my skin after my shower while towel drying myself. If I see something I don't like, I go to my photo book and check it out.
* I take my photo book with me every 3 months when I go to see my local dermatologist down here in Florida. My dermatologist is a very, nice lady and uses my photo book as a reference to refer to for my general skin examination. She has found a few benign lesions such as one of those actinic keratoses, those surface things, but with the photo book she notices if something is new or has changed. I think I have slipped from doing my monthly SSE because I know that my dermatologist will find any skin problems that I may have, and I know that my melanoma has not recurred since 1995. I also know that if anything like that happened again, I would come directly back to Memorial Sloan-Kettering for my treatment.
* No, I don't use it at all. I just don't like it. In fact, I would rather just make sure I don't miss any of my followup appointments. In that way I think I'll be OK and allow my doctor to check me out.
* Oh, you mean that very attractive book of digital photos of me? I must admit I don't use it regularly but I did use it to help me with a lesion on my nose that turned out to be a basal cell carcinoma. It started as a tiny bump on my nose that at first went away, but it always came back and turned a reddish/pinkish color. I compared tire spot to nay photograph in my book and it was not there, so I called my dermatologist right away who did a biopsy and it came back a basal cell. I found out I had to go have Mohs' surgery right away. Now I have learned all about Mohs' surgery and I will tell you that is way more than I ever wanted to know!
* I don't have good lighting any where in nay apartment.
* I definitely use nay photo book once a month for my SSE, especially because of my history of a melanoma on my left forearm back in 2000. In fact, everything seemed line at my last 4 month followup, but while showering the following week, I thought I noticed something peculiar on my chest, so I went right to nay book. Sure enough there was a changing mole on my chest, so I called you right away. You removed the mole from my chest and it came back a melanoma, but I understand that because it had negative margins it is completely removed. For a person in my case, who has many of these dark spots all over my body, I am very happy that I have my own photo book. It has saved my life.
* I have to take care of my kids and they are a handful. They are so noisy and I can't concentrate.
* I know my photographs are in your computer, don't get me wrong, I use my photo book, but I feel confident that my doctor and nurse will find any suspicious moles and take good care of me.
Patient Comments About the Format of the Photo Book
* How should I know if the color changes in one of nay moles if I can't see through the plastic? Now that I know I can remove my photo from the plastic I can see much better.
* I think the photographs are too small and I can't recognize any changes in my moles. I wish I had close-ups so I could really see the changes. I think the photos in the book should be larger so I can look at all of my moles better.
* I had a problem with checking the size of my moles. I thought the moles on nay body were the same size as the photo. I didn't know that each photograph with my moles is in proportion to other moles within that photograph, not nay body. I now realize that in order to check the size of my moles, I must keep in mind that a photo is only to be used to compare changes in size in relationship to each other.
* I wish I could have my photographs on a CD. I would like to do my SSE using my computer rather than my photo book.
* Since I didn't have close-up photos of two moles that I wanted to really look at closely, I used my own camera and took close-up photos. I think it works great.
* I know I have called you many times asking you questions about my photo book, but I still think the reason I can't see changes in my moles is because the photographs are not large enough. Some were too dark.
These findings suggest individuals with numerous lesions seem to employ different strategies in performing SSE, while some patients find SSE extremely difficult. Those who have a personal history of skin cancer seem to have a tendency to perform monthly SSE more than those who do not (Oliviera et al., 2004; Phelan et al., 2003). Others meticulously perform SSE using their photo books trying to look at every mole and frequently arrive at the conclusion that the photos are not large enough. Some patients examine and obsess over obscure lesions. These patients will call the office repeatedly asking numerous questions about these lesions. Very few patients will admit to not using their photo books and not performing SSE at all. Exploration into SSE performance with open-ended questions during the skin examination has proven very helpful to patients and to researchers as well. The researchers at Memorial found that by encouraging patients to openly discuss any problems they may be encountering with respect to SSE, the nurse and the doctor can offer helpful suggestions in problem solving. Sometimes a simple lighting problem or a problem with noisy children viewed by patients as a distraction may result in a patient's inability to perform SSE. The nurse can help to alleviate this problem by offering suggestions, such as performing SSE while children are taking a nap, thus relieving anxiety and placing SSE in a new perspective. This may seem simple, yet from a patient's perspective, nurses and doctors who offer support and an openness to discuss and answer patient questions, help patients try again or to resume SSE if they have stopped.
These findings further suggest that some patients are very happy with the format of the photo book, while others are not. Many didn't like the size of the photos in the book, while others felt the photo book was too heavy. Changes to the photo book, patient teaching sessions, and book demonstration are strategies to make the book more beneficial for patient learning and retaining the material. Stressing that the photo book is theirs to keep, use, and mark on, seems to be an important factor in patient followup discussions. Some patients need a little help to get over their initial intimidation and embarrassment of the photo book. Patients are now shown how to take the photos out of the plastic covering for better examination or to rearrange their order (before they were told they could do this but it was found that some patients were afraid to remove the photos from the plastic or did not remember having been told they could do this). Now a demonstration and return demonstration from the patient is given showing how to mark a suspicious lesion using a china marker onto the plastic photo covering and how to wipe it off (before they were told they could mark on the plastic photo covers with a nonpermanent marker or use stickers). The findings also suggest that patients didn't recall being told they could do this or were afraid to mark the plastic for fear they would ruin it.
Several patients used the words reference or resource when they spoke about the photo book. The research staff at Memorial realized the importance of stressing coordination of SSE with a routine monthly task. An example of this was to discuss the importance of coordination and repetition of a monthly task such as paying the bills. Usually patients were able to verbalize a date, time, and place they sit and write their monthly checks. Once they realized the importance of organizing this monthly activity and coordinating it with their monthly SSE, it really helped patients understand the importance of their role in organizing, performing, and coordinating their own SSE on the same day each month. This further emphasized the importance of early detection for melanoma prevention.
After documenting all patient comments about their use of the photo book and comments about its format, recurring themes were assessed. Tables 1 and 2 are tabulated lists of recurring themes for patient use and format of the photo book.
By sharing these findings with Canfield Imaging Systems, the research staff at Memorial worked with them to develop an improved 9" X 12" portfolio (see Figures 1 and 2). Included is the patient's 21 sector images which are 8" x 11", a china marker, a magnifying glass, and a DermaGraphix Body Map CD viewer with stand alone software. The new portfolio is light-weight (about 2 lbs, as compared to 4 lbs for the original book) and more compact (thinner) for easier use and storage. The china marker will allow patients to mark directly on the plastic photo covering of a suspicious lesion that they want to remember and bring to the dermatologist's attention. The magnifying glass is enclosed in a leather casing to protect the glass, and easily slides out for close-up viewing. The portfolio also includes two instruction sheets; one for SSE with print book, and one for CD viewer with straightforward step-by-step instructions and easy-to-follow directions (see Figures 3-6 for examples of cameras and photo room).
[FIGURES 1-6 OMITTED]
In conclusion, full body photography with a photo print book and nurse instruction on how to use it is an extremely effective management tool for assisting patients in SSE. It is technically challenging and is generally offered in centers with significant experience in evaluating and managing patients with multiple dysplastic nevi. Despite the relatively intensive nurse/patient instruction, with appropriate clinical management and followup, the book has been well received on an outpatient basis. Patients report finding new and suspicious lesions and are bringing them to the attention of dermatologists at Memorial. Ongoing nursing evaluation and clinical support are critical for successful management of this treatment program. Recognizing potential problems early in their evolution provides the ability to change treatment/education to better meet patient needs. These findings may not be applicable to patients in other settings, and further study in different settings is warranted.
Tabulated Patient Use of Photo Book
Patients who had skin cancer (malignant melanoma, basal cell 36%
carcinoma, and/or squamous cell carcinoma) felt they were at
high risk for developing another skin cancer and therefore
tended to use the photo book at least once a month if not more.
Patients who had many moles were compelled to use the photo 29%
book for that reason.
Patients who referred to the photo book as a resource or a 20%
Patients who left it up to their local dermatologist to use the 10%
photo book to find things.
Patients who involved another family member in SSE using their 4%
photo book for SSE.
Patients who did not use their photo book at all. 1%
Tabulated Patient Format of Photo Book
Those who thought they would like a CD in addition to their 34%
photo book for SSE.
Patients who did not like the size of the photographs, 27%
describing them as "too small."
Patients who did not like the plastic covers and were 21%
intimidated by them.
Patients who had no comments about the format, or thought it was 15%
Patients who were overwhelmed in general by the photo book. 3%
Acknowledgment: The author is grateful to the patients at Memorial Sloan-Kettering Cancer Center for their participation in this study.
Balch, C.M., Buzaid, A.C., Soong, S.J., Atkins, M.B., Cascinelli, N., Coit, D.G., et al. (2001). Final version of the American Joint Committee on Cancer staging system for cutaneous melanoma. Journal of Clinical Oncology, 19(16), 3635-3648.
Jemal, A., Murray, T., Samuels, A., Ghafoor, A., Ward, E., & Thun, M. (2003). Cancer statistics, 2003. CA: A Cancer Journal for Clinicians, 53(1), 5-26.
Oliveria, S.A., Sachs, D., Belasco, T., & Halpern, A. (2003). Adoption of new technologies for early detection of melanoma in dermatologic practice. Journal of the American Academy of Dermatology, 49(5), 955-959.
Rigel, D.S., & Carucci, J.A. (2000). Malignant melanoma: Prevention, early detection, and treatment in the 21st century. AC: A Cancer Journal for Clinicians, 50, 215-236.
Crutcher, W.A., Friedman, R.J., Sober, A.J., Greene, M.H., & Kopf, A.W. (1999). Dysplastic nevi and risk of melanoma. New York: The Skin Cancer Foundation.
Hanrahan, P.F., Menzies, S.W., D'Este, C.A., Plummer, T., & Hersey, P. (2000). Participation of older males in a study on photography as an aid to early detection of melanoma. Australian and New Zealand Journal of Public Health, 24(6), 615-618.
Kittler, H., Seltenheim, M., Dawid, M., Pehamberger, H., Wolff, K., & Binder, M. (1999). Morphologic changes of pigmented skin lesions: A useful extension of the ABCD rule for dermatoscopy. Journal of the American Academy of Dermatology, 40(4), 558-562.
Maguire-Eisen, M. (2003). Risk assessment and early detection of skin cancers. Seminars in Oncology Nursing, 19(1), 43-51.
Marghoob, A.A., Swindle, L.D., Moricz, C.Z., Sanchez-Negron, F.A., Slue, B., Halpern, A.C., et al. (2003). Instruments and new technologies for the in vivo diagnosis of melanoma. Journal of the American Academy of Dermatology, 49(5), 777-797.
Nehal, K., Oliveria, S.A., Marghoob, A.A., Christos, P.J., Dusza, S.W., Tromberg, J.S., et al. (2002). Use of and beliefs about baseline photography in the management of patients with pigmented lesions: A survey of dermatology residency programs in the United States. Melanoma Research, 12(2), 161-167.
Oliveria, S.A., Dusza, S.W., Phelan, D.L., Ostroff, J., Berwick, M., & Halpern, A.C. (2004). Patient adherence to skin self-examination. Effect of nurse intervention with photographs. American Journal of Preventative Medicine, 26(2), 152-155.
Phelan, D.L., Oliveria, S.A., Christos, P.J., Dusza, S.W., & Halpern, A.C. (2003). Skin self-examination in patients at high risk for melanoma: A pilot study. Oncology Nursing Forum, 30(6), 1029-1036.
Wolf, I.H., Blum, A., Hofmann-Wellenhof, R., Piccolo, D., Kerl, H., Garbe, H., et al. (2001). Dermatoscopic features of dysplastic nevi in melanoma and nonmelanoma patients. Melanoma Research, 11, 187.
Deborah L. Phelan, BSN, RN, OCN, is a Clinical/Research Nurse, Memorial Sloan-Kettering Outpatient Ambulatory Clime, New York, NY
Susan A. Oliveria, ScD, is an Epidemiologist, Memorial Sloan-Kettering Cancer Center, New York, NY
Allan C. Halpern, MD, is Chief, Dermatology Service, Memorial Sloan-Kettering Cancer Center, New York, NY
COPYRIGHT 2005 Jannetti Publications, Inc.