Interview with Professor Julia Scarisbrick
Consultant dermatologist, University Hospital Birmingham
Amplifying the voice of the healthcare expert, with the patient in mind, can help those living with T-cell skin lymphoma.
The powerful advocacy of patients reveals there may be psychological effects from T-cell skin lymphoma being misdiagnosed as psoriasis or eczema, causing uncertainty and impacting quality of life.
This slow-progressing condition, also called cutaneous T-cell lymphoma, is a cancer of the lymphocytes, a type of white blood cell that multiply abnormally in the skin. Across the UK people are living with this rare condition and it is time for individual action.
Impact of skin lymphoma on patients
Living with a chronic skin condition can have a profound impact on a patient’s quality of life. Dallas Pounds, director of services at the charity Lymphoma Action says: “People with skin lymphoma can suffer severe discomfort, itching, pain and fatigue with subsequent effects on employment, leisure activities, relationships and day-to-day living.”
“In addition, the psychological impact of the condition is significant. People report feelings of uncertainty, frustration, embarrassment, helplessness, confusion, worry, anxiety and depression. People also report feeling frustrated and isolated during the period of waiting for a diagnosis. It is draining to have to attend repeat appointments that might feel as though little progress is being made.”
T-cell skin lymphoma is usually diagnosed in those aged 50 to 74 years and is slightly more common in men than women. The symptoms can resemble those of common conditions such as eczema or psoriasis and they can respond well to some of their standard treatments which can prolong the time to reach an accurate diagnosis. Most patients need several GP visits and face a long period of monitoring before skin lymphoma is finally diagnosed.
Nurses play a crucial role in working with both the patient and other healthcare professionals to help care for those with skin lymphoma. Claire Lusted, advanced nurse practitioner says: “My role requires a broad skill set. I undertake clinical assessment; diagnosis and I am an independent prescriber.
“Patients are allocated a clinical nurse specialist (CNS) at the time of their diagnosis. The CNS will act as an advocate for their patient within the wider team and coordinate their treatment pathway to ensure that they receive the best possible care.
“Supporting patients and their families through a cancer diagnosis and treatment can be very rewarding. It is a time in people’s lives where they are vulnerable and I feel very privileged to be able to support them at such a difficult time.”
People with skin lymphoma have a poor quality of life. They have to live with a certain level of disease and knowing they have a cancer diagnosis.
New research to understand disease journey
Research is making progress in understanding the disease journey and its genetic characteristics. The PROCLIPI study is starting to identify factors that could help predict the outcomes in skin lymphomas, mycosis fungoides and Sézary syndrome.
Results have already established that some patients have a delay of more than four years before a diagnosis is made and they can receive appropriate therapy.
“People with skin lymphoma have a poor quality of life. They have to live with a certain level of disease and knowing they have a cancer diagnosis,” says Professor Julia Scarisbrick, consultant dermatologist at University Hospital Birmingham, who leads the Cutaneous Lymphoma Service and is chief investigator for the PROCLIPI Study.
Improving survival and quality of life
It is hoped this data will help build a prognostic index – a group of factors – that will enable patients at risk of disease progression to be identified allowing for improved survival and quality of life.
“People with skin lymphoma usually live with their condition for many years and experience symptoms flaring up from time to time. Everyone diagnosed with lymphoma, and those close to them, will have their own unique experience, and individualised needs for information and support,” adds Pounds.
Lymphoma Action provides information and support for people with lymphoma.
She continues: “We can support people affected by lymphoma to feel informed to talk to their GP or healthcare team by giving them information and providing practical and emotional support.”
Article commissioned by Recordati Rare Diseases
