Congenital Melanocytic Nevus and the Internet: An Evaluation of Available Web-Based Resources

Abstract

The Internet has become an increasingly used tool for patient education and the coordination of support groups. For families with children diagnosed with congenital melanocytic nevus, this is also the case. To evaluate the quality of congenital melanocytic nevus-related information on the Internet, a standardized assessment of web sites was used. The overall Internet informational and support resources regarding congenital melanocytic nevus were found to be accurate and user friendly but limited. The authors recommend practitioners direct patient families to www.nevusnetwork.org as a starting point, and supplement an interest in pictures and information regarding support groups with visits to www.dermatlas.org and http://groups.MSN.com/AussieNevusSupportGroup.

Congenital melanocytic nevi (CMN) are pigmented lesions that are present at birth and are diagnosed in approximately 1 % of newborns. They are comprised of cells of melanocytic cells and, as opposed to acquired nevi, typically extend deeper and may involve neurovascular structures and hair follicles. Two theories advanced by Masson and Mishima,¹ respectively, propose that pigmented nevi originate from epidermal melanocytes and Schwann cells, or neural crest precursor cells. Congenital melanocytic nevi are generally smaller than 4 cm but are termed “giant” if they are larger than 20 cm. This presentation is uncommon (approximately 1 in 20,000 newborns) but carries with it an increased risk of malignant melanoma.¹

Childhood/prepubescent melanoma is rare, comprising 0.3% of all melanomas. Nonetheless, as many as 40% of them are thought to arise from an existing CMN.¹ Giant CMNs may carry a higher chance of malignant conversion than do smaller CMNs, although the precise risk is not well defined. A recent retrospective review of 432 patients with giant CMNs in the Surveillance, Epidemiology, and End Results database (SEER) estimated the cumulative risk at 2.8%,² whereas smaller retrospective series report a greater range of risk, from 2% to 42%. The risk in nongiant congenital nevi has been estimated to be lower, at approximately 0.8% to 2.6%.³ Melanoma that develops in giant CMNs also appears to develop earlier, 80% before the age of 7 years, arguing for earlier excision.¹ In contrast, melanoma in nongiant CMN tends to develop after puberty. When melanoma is ultimately diagnosed, therapeutic guidelines and prognosis are similar to those for adult disease.

Diagnosis is most commonly made by simple physical examination. Giant CMNs can be quite extensive, covering much of the trunk or torso, occasionally in a dermatomal distribution. Males tend to have more involvement of the face and trunk than do females.⁴ Underlying tissue atrophy has been described.⁵ The differential diagnosis includes Mongolian spots, as well as café-au-lait spots. CMNs have been associated with other disorders, including von Recklinghausen disease and spina bifida.⁶ Because leptomeningeal involvement can occur, usually presenting with associated epilepsy or hydrocephalus, preoperative computed tomography is warranted in lesions that overlie the spine or midline of the head or neck.⁷

Treatment ideally is by simple excision and primary closure. In the case of larger lesions, serial excision flap or skin graft closure often is used. Tissue expansion also is used; on occasion, cultured epidermal keratinocytes are required.⁸

Attempts at dermabrasion, Q-switched laser,⁹ and chemical peels¹⁰ have been described. Because these lesions can involve the deep dermis and subcutaneous tissue, and because these techniques only remove superficial tissue, they are generally are regarded as suboptimal.

Because CMN are common and carry additional risk, families of children with CMN often desire complete, reliable information. With the increasing popularity and availability of Internet resources, many patients and families are turning to their computers for education. We sought to design a study to evaluate the utility of the Internet in providing information about this disease process.

MATERIALS AND METHODS

The search terms “congenital melanocytic nevus” were entered into the three most commonly used (per Nielsen ratings) Internet search engines: Google.com, Yahoo.com, and MSN.com. The first 100 web sites located by each search engine were cross-referenced with each other. Thirty web sites (n = 30) that were in common to two of the three search engines were included in the study.

Each website was subjectively evaluated by three independent observers (two physicians and one medical student) based on 10 categories. These categories addressed the presentation of each site regarding: definition of CMN; cause of CMN; pictures; description of risks involved; prognosis; melanoma information; treatment options; support group links; accuracy of the information presented by the web site; and its readability to the layperson. Each web site was given a score within each category from 0 to 5. A 0 was given if the category was not addressed. A 5 was awarded if a category was maximally addressed per predefined criteria. For example, a web site received a 5 if: it clearly and comprehensively defined CMN; a clear, comprehensive explanation of the theories behind how CMN was thought to develop was offered; several pictures were presented, both preoperative and postoperative, as were differential diagnoses; known associated syndromes were described and the estimated chance of melanoma developing presented; melanoma definition, prognosis, and treatment were clearly discussed; the treatment options for CMN were clearly defined, including the risks of nonoperative management; prognosis was clearly outlined; links to CMN support groups were given, including to physicians who treat CMN; the information presented overall was accurate; and finally, the site was easy to navigate and easy to use. Scores from all categories were averaged and compared.

RESULTS

Category average scores for all sites ranged from 0.63 to 3.31, with an overall average score of 1.79; highest average scores were for readability and accuracy, whereas lowest scores were for support groups and cause. Of the 30 sites evaluated, www.nevusnetwork.org comprehensively ranked the highest, with an average overall score of 4.27 of 5. When single categories were evaluated, www.nevusnetwork.com was ranked highest for all categories except: definition, pictures, melanoma, support groups, and accuracy. Sites that ranked higher in those categories included: www.emedicine.com, www.dermatlas.org, www.stanford.edu, and http://groups.MSN.com/AussieNevusSupportGroup, respectively (see Table 1).

Table 1: Results and Recommendations

DISCUSSION

The methods used demonstrate a useful tool in evaluating the available quality of Internet information. Future studies performed in this fashion would be improved by involving a larger number of observers; using multiple search terms; using patient input during category selection; and randomly selecting sites from search engine displays to allow for a more normal distribution of data, allowing subsequent statistical analysis.

Using the described Internet site ranking system, the available Internet-based information regarding CMN was evaluated and found to be reasonably accurate and user friendly. However, the sites as a group were comprehensively inadequate in their content, as evidenced by an overall average score of 1.79; particular weaknesses were cause and support groups.

Despite these overall findings, a small group of web sites provided excellent information. www.Nevusnetwork.org was the best Internet resource evaluated using our defined criteria, with an overall average score of 4.27 of 5. The site scored 4 or 5 in all categories by all examiners. It offered clear, accurate, up-to-date and easy-to-interpret information, in text and pictorial form, in the setting of a web site that was easy to navigate. http://Groups.MSN.com/AussieNevusSupportGroup and www.dermatlas.org ranked higher in support groups and pictures. Although www.emedicine.com and www.Stanford.edu ranked slightly higher in melanoma and accuracy (scores of 4.83 and 4.63, respectively), www.nevusnetwork.org ranked only slightly behind these sites (with average scores of 4.33 for both categories).

From these findings, we conclude that the overall Internet informational and support resources regarding CMN are accurate and user friendly but limited. Practitioners can consider directing patients and their families to www.nevusnetwork.org as a starting point, and supplement an interest in pictures and information regarding support groups with visits to www.dermatlas.org and http://groups.MSN.com/AussieNevusSupportGroup. The authors have no professional or financial relationships with any of the evaluated web sites or organizations.