Dear Editor:

We were delighted to read the Flowers et al. article that brings attention to recognition and care of patients with Gorlin syndrome (GS), or basal cell nevus syndrome, and write to expand on the impact of this diagnosis on the patient's quality of life as well as to increase awareness of clinical interventions that can have a significant impact on the health outcomes of these patients (Flowers et al., 2023). This topic is highlighted by several studies on quality of life and mental health in individuals with GS. One study administered surveys assessing quality of life and depressive symptoms meeting criteria for clinical evaluation for depression in nine of 18 patients with GS, with results that showed 50% of survey participants with significant depressive symptoms (Shah et al., 2011). An additional study described quality of life questionnaire responses from 19 patients with GS, with a decreased quality of life correlating to an increased number of basal cell carcinomas (Huq et al., 2017). A GS diagnosis has a significant negative impact on the quality of life. In many diseases, patient support and advocacy groups were noted to increase quality of life, health literacy, and self-reported psychosocial well-being (Huq et al., 2017; Shah et al., 2011).

Most research on the impact of patient support groups or advocacy groups has been conducted in the context of cancer. Studies have shown that, over the course of participation in a support group, quality of life scores improved in the domains of eating, emotion, pain, “global bother,” and response to treatment (Vakharia et al., 2007). For those with head and neck cancer specifically, participation in a support group was a more important predictor of quality of life than the type of treatment and length of time since diagnosis (Vakharia et al., 2007). In individuals with breast cancer, those who joined a peer support group felt a sense of belonging and reduced levels of anxiety and reported overall increased scores in the mental aspect of the quality of life (Taleghani et al., 2012). Beyond the well-documented impact on the quality of life, there have been reports that showed that patient support groups can improve aspects of health literacy (Wu et al., 2023). As noted by Flowers et al., the low prevalence of GS contributes to limited knowledge about the disease. Increasing health literacy is important for patients to seek diagnosis and treatment as soon as they can.

A comprehensive 2021 guideline for the clinical management of GS published by Verkouteren and colleagues highlighted important management considerations for patients with GS, including psychological evaluation for support and counseling for all patients after diagnosis, and attention to this topic during follow-up (Verkouteren et al., 2022).

Beyond the care you provide in the clinic, there are several support groups worldwide with a focus on GS. The Gorlin Syndrome Alliance (GSA) states its mission as “to thoughtfully support, comprehensively educate, and aggressively seek the best treatments and a cure for those affected by Gorlin syndrome” (GSA, n.d.). The GSA website includes resources to connect individuals with GS with live and virtual community groups, medical professionals, and advocacy events. On the basis of the challenges noted by Flowers et al. in their feature article, we strongly encourage providers to connect patients with patient advocacy groups like the GSA to provide vital education and support.

Kristin A. Tissera
Duke University School of Medicine
Department of Dermatology
Massachusetts General Hospital
Elena B. Hawryluk
Department of Dermatology
Massachusetts General Hospital
Dermatology Section
Department of Immunology
Boston Children's Hospital [email protected]

Flowers L., Sandhu M., Martin K. (2023). Skin cancer: Basal cell nevus syndrome (Gorlin syndrome). Journal of the Dermatology Nurses' Association, 15(6), 268–272. Gorlin Syndrome Alliance. (2024). https://gorlinsyndrome.org/. Huq A. J., Bogwitz M., Gorelik A., Winship I. M., White S. M., Trainer A. H. (2017). Cohort study of Gorlin syndrome with emphasis on standardised phenotyping and quality of life assessment. Internal Medicine Journal, 47(6), 664–673. 10.1111/imj.13429 Shah M., Mavers M., Bree A., Fosko S., Lents N. H. (2011). Quality of life and depression assessment in nevoid basal cell carcinoma syndrome. International Journal of Dermatology, 50(3), 268–276. 10.1111/j.1365-4632.2010.04658.x Taleghani F., Babazadeh S., Mosavi S., Tavazohi H. (2012). The effects of peer support group on promoting quality of life in patients with breast cancer. Iranian Journal of Nursing and Midwifery Research, 17(2, Suppl 1), S125–S130. Vakharia K. T., Ali M. J., Wang S. J. (2007). Quality-of-life impact of participation in a head and neck cancer support group. Otolaryngology—Head and Neck Surgery, 136(3), 405–410. 10.1016/j.otohns.2006.10.018 Verkouteren B. J. A., Cosgun B., Reinders M. G. H. C., Kessler P. A. W. K., Vermeulen R. J., Klaassens M., Lambrechts S., van Rheenen J. R., van Geel M., Vreeburg M., Mosterd K. (2022). A guideline for the clinical management of basal cell naevus syndrome (Gorlin–Goltz syndrome). The British Journal of Dermatology, 186(2), 215–226. 10.1111/bjd.20700 Wu M. J., Chen C. H., Tsai S. F. (2023). Effects of patient support group on health literacy: A study using the Multidimensional Health Literacy Questionnaire. Medicine, 102(21), e33901. 10.1097/MD.0000000000033901