Patient Journey

Patient journeys are a way to show what life can look like when a person has CMN. They can show where to improve care. They are made with patient involvement.

The relationship between a patient and a healthcare provider has changed over the years. In the area of rare diseases, often the patient knows more about their condition than the doctor who is treating them, and this is precisely not what the patient is looking for.

Patients, and their families, have to deal with a lot of challenges during their healthcare journey. This starts with the medical diagnosis, treatment, and next steps. The patient journey is marked by uncertainty, no effective medical treatments, and many unanswered questions. The reason that this journey is so difficult, is because there is little knowledge regarding rare diseases. Despite there being approximately 7000 rare diseases identified worldwide, medical professionals may only see a few patients with a rare disease during their entire career.

The Patient Journey collects the common needs of a patient by mapping their needs across the series of stages of the Patient Journey. The Patient Journey not only pays attention to the medical aspects but also to the psychological aspects. Each stage covers the clinical presentation, the patient’s challenges, needs, and their objective to improve the care. When the Patient Journey is finished this is reviewed by patients and professional experts. By using graphics, patients and healthcare providers can discuss the personal needs of a patient paying attention at the same time to the expertise of both patient and professional leads.

The objective remains: improving care for patients with a particular rare disease.

We have developed the Patient Journey for CMN in collaboration with the European Reference Network (ERN-skin).

We defined the following phases in  the patient journey:

1. First symptoms
2. Diagnosis of CMN
3. Treatment
4. Follow-up care
5. Additional symptoms
6. Palliative care

Not all phases are applicable to a person with CMN.

Challenges are:

• Diagnosis possible neurological involvement.
• Establishing prognosis and care strategy.
• Care psychological impact of the diagnosis.

Challenge is the psychological impact on families during the diagnosis. Another challenge is the diagnosis of possible neurological involvement.

• Decision on whether to remove or not to remove the nevus.
• Further research is to learn more about how to assess the risks of melanoma, possible treatments, and their outcomes.
• Psychological support for parents and siblings as well as patients.
• Finding an experienced plastic surgeon.

• Transition to adult care.
• Patients and family members experience psychosocial challenges.

• Finding the proper expertise when there are morbid or deadly symptoms.
• Experiences with clinical trials are scattered.
• Lack of statistics

• Deep grief of families in case of loss.
• Psychological support and guidance from professional counselors are necessary.
• Retention of family expertise and experience.
• Patient organizations connect and collectively commemorate people who have passed away.

Here you can find the poster of the patient journey for CMN and booklets (English, Dutch, and Spanish) with a collection of personal stories from different stages of CMN as described on the poster.