Patterns of skin cancer and treatment outcomes for patients with albinism at Kisangani Clinic, Democratic Republic of Congo

Abstract

Background People with albinism (PWA) are at increased risk of photodamage and skin cancer. In many parts of Africa, there is a significant lack of knowledge regarding albinism which can lead to societal stigma, discrimination, and persecution from an early age. In the Democratic Republic of Congo (DRC), there is limited clinical data on PWA and skin cancer. We aim to better understand sociodemographics, risk factors, clinical features, and outcomes of this population. Methods Patients with a diagnosis of albinism and skin cancer presenting to Kisangani Albino Clinic were enrolled. Results Of 205 PWA, 61 patients were diagnosed with skin cancer with a mean age of 26.5 years. Common occupations were student (45.6%) or unemployed (26.4%). Discrimination was experienced from close contacts (24.4%) and society (67.4%). A majority (88.5%) had never used sunscreen, only 4.9% used fully sun protective clothing, and 90.2% spent 4 or more hours in the sun daily. Skin cancers had a mean size of 3.8 cm and were most commonly located on the face (47.7%). Squamous cell carcinoma was the most common histopathological diagnosis. Most patients underwent excision, and 90.2% had clinical clearance of tumors at a mean follow‐up of 5.7 months. Conclusion People living with albinism in the DRC experience a high rate of nonmelanoma skin cancers at a young age and additionally face a number of psychosocial challenges. This study represents the first attempt to analyze a cohort of patients with albinism from the DRC and serves to increase awareness of this vulnerable population.

The prevalence of nonmelanoma skin cancer in a population of patients with oculocutaneous albinism in Haiti

“…However, it very closely matches the average age of 34.7 from a study in Nigeria 3 . Overall, our data are consistent with the fact that patients with albinism develop NMSC at an earlier age compared with the surrounding communities, as measured in prior studies in Africa 1,12 . Also, in comparison with statistics of the general population in the USA, the average age of diagnosis for SCC and BCC is over 60 18 .…”

“…Such increased awareness of NMSC prevalence is even more important in patients with albinism who are diagnosed with NMSC at an earlier age and have a higher prevalence of NMSC relative to the rest of the surrounding communities 1–3,6–10 . For example, in Africa, the incidence of SCC is 1000 times higher for patients with albinism compared with the general population 11,12 …”

Sociodemographic features of a cohort of people living with albinism in Botswana

“…A recent study of PWA in the Democratic Republic of the Congo found that a majority of respondents had never used sunscreen, spent at least 4 hours in the sun daily, and only a minority used fully sun-protective clothing. 16 Similarly, a study done in Tanzania found that 50% of the PWA surveyed spent >6 hours daily in the sun, 62% did not wear a hat, and 80% did not use fully sun-protective clothing. 7 , 19 The increased rates of sun-protective behavior in our study population are likely the results of a dedicated albinism care program at the PMH dermatology clinic, established 1 year prior to this study.…”

“…Compared with prior studies of PWA in Africa, our cohort had a higher mean age (38 years). 7 , 8 , 16 , 17 However, this may be because of location-specific demographics, as the non-PWA cohort had a similar mean age. The PWA surveyed reported living in more rural locations, having a lower income, and depending more on government welfare compared with the non-PWA group.…”

“…Poor health care access had been cited as a common challenge for PWA in Africa, which could contribute to the development of preventable complications of skin cancers and visual impairments. 1 , 2 , 16 , 18 Uncorrected visual impairments can then hinder education, resulting in reduced opportunities for meaningful employment. 8 , 18 These findings were further supported by an additional arm of this study, which analyzed 27 interviews from members of this PWA cohort and demonstrated that limited skin/eye care access, visual impairment, and an unsupportive educational environment were major contributors to poor quality of life.…”