Disease Background and Patient Pathway of Melanoma

Executive summary

Melanoma is a type of skin cancer that is developed as a result of unintended growth of pigment containing cells in the skin i.e. melanocytes; which if not detected early may be life threatening. The cancer is prejudice against the white people mostly non-Hispanic population and affect areas getting intermittent sunlight. Undoubtedly, Britain is largely a sun loving nation and in the last 2 decades has seen an increasing trend of incidences of melanoma making it 5th most common form of cancer in the UK. Despite of being an easily curable disease it holds a huge risk for the population as in most of the cases the cancer remains undetected and can spread to other body systems within a few weeks resulting in multiple organ failure.

Fortunately, parallel to increasing trends of incidence of melanoma in population, comprehensive research and advancement has taken place in early detection, prognosis and management of the disease as well. With regards to the UK healthcare, a melanoma patient undergoes a series of investigation in health institutions and interacts with multiple healthcare providers including both human and computer to receive the best of care. This report aims to map that patient journey to foster an understanding of the whole pathway and its distinct components. The objective is also to highlight any shortcomings in healthcare delivery system and how to overcome those challenges in order to enhance patient care.

Disease Background

Epidemiology

Overall, melanoma accounts for approximately 4.5% of the total skin cancer diagnosis globally and 4% of total cancer diagnosis in the UK with approximately 16000 new melanoma diagnosis every year. Based on (Cancer Research UK statistics), melanoma causes roughly 2400 deaths per year i.e. 6 deaths per day. Notably, melanoma skin cancer is more common in adults aged 80+ in England (10% diagnosed at stage III or IV), versus those aged 15-59 (8% diagnosed at stage III or IV). Late stage melanoma skin cancer, is also more common in adults aged 60-79 (10% diagnosed at stage III or IV) versus those aged 15-59 (8% diagnosed at stage III or IV) (Service, 2016). Also, it is prevalent in males (51%) than in females (49%), specifically in males of age above 60.

Interestingly, the incidence rates are relatively higher in females in the age group 15-39 for some reason. Smittenaar CR et al [10] projected melanoma skin cancer incidence rates to rise by 7% in the UK between 2014 and 2035, to 32 cases per 100,000 people by 2035.This includes a larger increase for males than for females. Clearly, melanoma amongst other cancers is a huge concern for public health. On the contrary, melanoma is also one of the most manageable cancers with a survival rate of 9/10 for 5 years after primary diagnosis. Also statistics have proven about 86% of melanoma cases are preventable only proving with awareness and proper monitoring we can tackle the disease.

Aetiology

Essentially skin cancers are only associated with extensive sun exposure or actinic damage, however realistically melanoma can go undetected and has high likelihood of recurrence warranting a more comprehensive understanding of the causation. Based on rigorous research melanoma has been attributed to multiple risk factors such as genetic susceptibility, environmental factors, dietary and lifestyle, vaccination, number of nevi on the body and family history. UV exposure from sun remains the primary and widely accepted cause for malignant melanoma, mainly due to genotoxic effect of ultraviolet radiation (Oliveria SA, 2006). Similarly, UVA exposure from tanning bed use can also contribute in development of melanoma (Gandini S, Jan 2005). A meta-analysis of various observational studies further revealed that higher latitudes and intermittent sun exposure have positive correlation with sun damage (West, 2012). This hypothesis explains why countries closer to equator such as New Zealand and Australia have higher incidence rates of melanoma.

Furthermore, a prior history or even family history of melanoma skin cancer constitutes a strong risk factor for the disease proving it is bound to a genetic component.Therefore, in the last 2 decades, this family clustering of the disease initiated a rise in research exploring genetic disposition of melanoma.

Tsao et al (Tsao H.) studied families with inherited melanoma demonstrating the presence of a clear pattern of autosomal-dominant inheritance with multiple family members affected in more than the first generation. Other studies prove that certain phenotypic characteristics such as red hair, fair skin, numerous freckles, light eyes, sun sensitivity and an inability to tan are major risk factors for getting melanoma (Titus-Ernstoff L, 2005).

Other important risk factors involve presence of melanocytic nevi on the skin (Holly EA, 1987). Guidelines such as ABCDEs of moles or number and size of the nevi help detect the patient at risk. Moreover, these help in patients to self-monitor themselves for developing any suspicious or inconsistent skin lesion.

Evidently, most of the research has been conducted to explore the relationship between UV radiation and cutaneous melanoma. Curiosity amongst physicians has generated various hypothesis associating dietary factors that may vary the risk leve (Veierod, 1997). Also, some vaccines are undergoing clinical trial that have shown to trigger immune response against melanocytic cancer cells and prevent them from returning.

Occurrence and Diagnosis

Melanoma skin cancer does not present with any list of apparent symptoms instead they can be just a growth, mole, or even a skin coloured spot on the body that may appear harmless. Moreover, melanoma skin cancer generally appear on sun exposed areas of the skin such as scalp, arms, back or face in males and more consistently on legs in females, but they can still appear in non-sun exposed areas such as genital area, inside the mouth, ears and axillae. Therefore, detection of melanoma on the skin through a naked eye exam or with a dermatoscope is intensive, but still indispensable part of the diagnosis.

The prognosis in melanoma is directly proportionate to the depth of the neoplasm, which in turn increases with time. Indeed, in melanoma diagnosis, timely recognition, detection and rapid treatment of melanoma remain critical. Malignant melanoma, compared to other cancers, has the advantage of the cutaneous location, which permits its early detection through non-invasive approaches. Nevertheless, pathological examination remains the gold standard for diagnosis (Marco Rastreli, 2014). In order to prevent overseeing such lesion, it is advised to look for ABCDEFs of melanoma, which is an acronym for Asymmetry, Border irregularity, Colour, Diameter, Evolving and Funny looking lesion while examining the skin. Once found suspicious, the lesion can be biopsied to confirm the diagnosis.

Post the confirmation of diagnosis, histopathology of excised lesion helps the dermatologist or specialist to determine the type of melanoma based on its size, shape, depth and spread of neoplasm. Process further helps in staging and evaluating the malignancy of the cancer. The British Association of Dermatologist widely accepts the Tumour-Node-Metastasis (TNM) system created by the American Joint Committee of Cancer (AJCC) for staging melanoma cancers and deciding the needed intervention. There are also other ways of staging that are employed in UK such as:

Early melanomas (Stages 0 and I) are localized; Stage 0 tumours are in situ, meaning they are non-invasive and have not penetrated below the outer layer of the skin (the epidermis). Stage I tumours have invaded below the epidermis into the skin’s next layer (the dermis) but are small and have no other traits such as ulceration that put them at high risk of spreading (metastasizing) to nearby lymph nodes or beyond.

Stage II tumors, though localized, are larger (generally 1 mm. thick or larger) and/or may have other traits such as ulceration that put them at high risk of spreading to the nearby lymph nodes or beyond. They are considered intermediate or “high-risk” melanomas. More advanced melanomas (Stages III and IV) have metastasized to other parts of the body. There are also subdivisions within stages.

Treatment

Dependent on the stage of melanoma treatment involves surgical excision of the skin cancer. Lately, techniques like Mohs micrographic surgery along with the help of immunohistochemistry stains (that highlight melanocytic cells) provide microscopic precision hence minimising the risk of post-surgical metastasis. In advanced cases(stage III, IV), when melanoma has spread to other systems; adjuvant treatment such chemotherapy with drugs including Decarbazine and imiquimod, and immunotherapy drugs such as pembrolizumab (Keytruda), nivolumab (Opdivo), and ipilimumab are used to counter cancer cells. Preventive care involves diligent sun protection and use of sunscreen. Also studies have shown positive effects of vitamin D supplements and anti-oxidants to prevent recurrence of melanoma.

Patient Pathway

This patient pathway outlines the journey of a melanoma patient in 6 distinct steps in the UK healthcare setting. The steps may vary based on the type, stage of melanoma or individual situation of patient. To understand the pathway, we will study a hypothetical case of a 40 year-old with skin type II non-hispanic male whose uncle is recently diagnosed with stage III melanoma.

Suspicion

Patient’s first uncle is recently diagnosed with melanoma, who also suggested him to get a consult from a dermatologist. Patient is anxious as he spends most of the time outside in the sun due to his occupation and has many uncertain moles and scars. Being totally unaware of this disease he books an appointment with his physician to talk about his concern.

Detection

His physician finds some suspicious lesions and refers him to a dermatologist for a comprehensive exam. The dermatologist finds actinic damage, a few benign cancerous lesions and an irregular lesion consistent with melanoma. Dermatologist performs a biopsy of the lesion on his forearm and sends to pathology.

Diagnosis

Pathology reports returns with a positive malignant nodular melanoma and the patient is requested to make another appointment with the dermatologist to discuss further intervention. On the returning consultation, the dermatologist explains in detail about melanoma and advised the patient to undergo Mohs surgical excision.

Treatment

The patient books an appointment with surgery for Mohs excision. However, he is concerned for his surgery as he is taking medications for hypertension and diabetes. The dermatologist suggests him to visit his GP first and get his consent for the surgery. The patient sees his GP, who gives him consent for his surgery but strongly recommended him to stop his aspirin dosage at least 2 weeks before the surgery which the patient follows. The patient undergoes a surgical excision of the melanoma in plastic surgery and was educated about the wound care by the nurse.

Recurrence/Follow-up

Patient follows up with his dermatologist again to ascertain there is no remaining skin cancer or metastasis of tumour to other systems. The dermatologist does a comprehensive skin exam and assures the patient that the surgery was successful and he has no skin cancer left behind. However, the dermatologist finds out some palpable lymph nodes and is worried if the cancer has spread to the lymph nodes. Therefore, he suggests a CT scan of the lymph nodes and also a blood test to ascertain the diagnosis. Patient undergoes a CT scan/PET scan of his body and his results come back positive for cancer. The dermatologist discusses about patient’s condition with other healthcare professionals and refers AJCC system to determine the stage of melanoma/cancer. Meanwhile, the patient is recommended genetic testing to narrow down his treatment options. The patient visits his dermatologist to start treatment and is given a combination of palliative treatment and radiotherapy. Patient makes appointments with radiation labs for his scheduled radiation doses. Also collects the prescribed medicine from the pharmacy.

After Care

The patient continues his treatment along with regular follow ups with his dermatologist. He is also advised to keep track of his moles with the help of application such as Miiskin or SkinVision. While he is considering to participate in clinical trials, patient signed up with melanoma/cancer societies and communities to educate himself about the disease and also for emotional support. His family also supports him during the entire process. Patient also makes sure his children visit the dermatologist for an annual skin exam.

Data Capture and Sharing

Throughout patient’s journey from very screening to intermediate care and even reablement, there is a huge amount and variety of data collected. Figure 6 illustrates the institutions that captures and transmits the data amongst themselves in the process.

Beginning from very GP EHR, information was stored about concern, examination and prognosis which was further transferred to the hospital EHR. During all the consults within the hospital, the EHR was constantly updated with patient information and any new significant finding. While there were many other stakeholders involved in the process that may or may not have an autocratic database for each one of them. For example, laboratory or imaging data might be stored in separate databases and only conclusive micro data is shared with the hospital EHR. Similarly, given the complexity and heftiness of data produced from gene sequencing, compiling it with the EHR makes minimal sense.

Interestingly, dermatological images are of major diagnostic aid to the patient, therefore high definition image data in the form of jpeg or other format has to be stored in the EHR for future referencing. This definitely generates a huge workload on the database. Solution to this problem is using computer application such as mole mapping. Mole mapping or total body photography is an effective tool for detecting new or changing lesions by patients, primary care physicians, and dermatologists. In particular, total body photography can improve self-skin examination accuracy and melanoma detection by patients. Thus, it can be used for both screening purposes and monitoring of high-risk lesions (Higgins, 2014). The utility of cutaneous imaging might also help reduce diagnostic error and increase efficiency of physicians. Lastly, all the data collected from separate databases is used by research facilities as depicted.

Challenges in the pathway:

Even with a complex linear pathway of melanoma patients, there is still a massive room for improvement in the pathway in various aspects. Three major areas are highlighted that might need some serious brainstorming.

Early diagnosis

Most crucial aspect of treating melanoma skin cancer is dependent on its early detection and confirmation of diagnosis. Out of many issues that can be pointed out from the aforementioned case, general public awareness of the disease, elongated time to confirm the diagnosis and lack of direct communication between doctor and the patient are a few important ones. Although, the latter might have a favourable argument of physicians being busy, but tackling the first two might have prevented the patient from series of high-risk treatments and long hospital hours. Also increased public awareness of the disease and its prevention can prevent the patient from getting sun damage at the first place.

Redundant multiple visits

In the above mentioned case, the patient needed to make multiple consult appointments with the specialist, which proves to be redundant. The specialist should have checked for melanoma and its metastasis during their first consult, considering patient’s strong family history. And recommended the patient to immediate desired treatment. Again direct mode of communication or having a technological intervention to this problem may solve the need for redundant patient-doctor visits.

Multiple nodes of data collection

Collecting information at each and every terminal of the patient’s journey might seem significant; however, this results in a lot of data duplicity and redundancy. Especially with patient’s pictures from mole mapping or simply other disease like acne. Not only it produces a huge amount of unneeded data it also puts patient’s privacy at a huge risk. With every increase in data collection point, the chances of data breach increases and patient loses his anonymity. Again one might have to rethink about the model of data collection and transmission between these stakeholders. It is most plausible to have a centralized system with only controlled access to decentralised data storage systems.

Conclusion

There are many other miscellaneous barriers which although may not manoeuvre patient pathway, but can impact in overall improvement of patient’s experience. Such as lack of experienced physicians and specialists, less empowered nurses who can conduct simple procedures like biopsy. Also, areas like genetic testing to design targeted treatment hold a huge potential along with complementary treatment in adjunction with conventional treatment. Another important factor to consider here is the timeframe of each and every process. Reduction in time frame can increase the success rate of the treatment. In conclusion, with a little attention to fill the gaps in the patient pathway, hopefully we can provide a more enhanced and successful patient care.