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One-Stop Shop for Mycosis Fungoides Hailed a Success

LIVERPOOL - A 1-day multidisciplinary 'super clinic' set up to treat patients with a diagnosis of mycosis fungoides cutaneous T-cell lymphoma (MF-CTCL) was featured as a possible model for future care, providing comprehensive patient-centred management, as well as continuing practice-based education for clinicians.

Mycosis fungoides cutaneous T-cell lymphoma is a rare and often misdiagnosed disease. It is usually a very slow-growing type of skin lymphoma and usually is seen in people aged 50 or older and is most common in men. Each year in the UK, approximately 450 people are diagnosed with the condition, according to the British Association of Dermatologists.

Claire Bailey, MB BS, consultant dermatologist at the Royal Cornwall Hospitals NHS Trust, Truro, Cornwall, presented findings of the project at this year's British Association of Dermatologists 103rd annual meeting.

"I genuinely feel this is the way we need to work in the future," asserted Dr Bailey, speaking to Medscape News UK after her talk. "All my staff, and the patients, feel the same because the super clinic was such a real improvement in care for the patients, as well as an education for the clinicians. So much so, that we are now expanding the project and will roll out the next MF-CTCL super-clinic in Exeter in November." 

Rare Educational Opportunity

The in-person super-clinic brought together dermatology and haematology specialist doctors and nurses, with histopathologists, patients, and carers in a one-stop shop where blood and any other relevant tests were performed in one day. Patients' and clinicians' views on the service were gathered. Importantly, both diagnoses and treatments were evaluated while clinicians benefited from a rare educational opportunity with so many MF-CTCL patients in one place at the same time.

Mary Wain, MRCP, consultant dermatologist at St John's Institute of Dermatology, Guy's and St Thomas' NHS Foundation Trust, London, moderated the session and told Medscape News UK: "This is a fantastic clinic that brings together the best of dermatology and allied specialities that brings services for patients with rare disease closer to home to get the correct diagnosis, staging, and management. It's more convenient for patients and a nice collaborative working environment for doctors and the whole multidisciplinary team.

"There's also great education value here for doctors, specialist nurses, pharmacists, and actually they've set up a specialist dermatology pharmacy on the back of this. It's also valuable in sharing experience from those who have dealt with many more patients with MF-CTCL, as well as theoretical knowledge," added the doctor with a specialist interest in MF-CTCL.  

Geographically Isolated

MF-CTCL is difficult to diagnose and management is challenging because no standard care pathway exists. "It's a complicated condition that affects a minority group of patients who are geographically isolated in Cornwall – we have around 40 in the county," explained Dr Bailey, adding that the existing supra-network multidisciplinary team was based in Bristol, but it is 168 miles from Truro. 

"Clinicians and patients would benefit from optimising care with the best expertise and management," she continued, adding that, "patients are often being seen by a different doctor every time, so we need to improve quality of care for patients while improve specialist education of the disease for clinicians." 

Early appearance of MF-CTCL may resemble eczema leading to delayed diagnosis, while progression is slow and unpredictable, and accurate staging requires involvement of specialists alongside biopsies and specific tests that are crucial to determining appropriate treatment, she added.  

With all this in mind, Dr Bailey invited the local Truro-based haematology consultants, and the MF-CTCL specialist from Bristol to create a 'super-clinic'. This comprised inviting 50 patients into the hospital for 1 day to meet a range of experts from two medical specialties – dermatology and haematology – working alongside histopathologists and specialist nurses.

Multiple Aims

The super clinic had multiple aims, including: to gather, identify, and accurately stage patients, adjusting treatment accordingly; interactively educate patients on their condition and treatment, answering questions and providing support; provide a focus for clinicians on MF-CTCL, to increase their experience in management of this rare condition; establish an accurate database of all MF-CTCL patients with their disease stage; and to gather feedback on the super clinic from patients and clinicians, as well as initiating a longer-term patient quality of life assessment. 

Patients completed an tablet-based survey upon arrival, saw a consultant, and had blood tests or biopsies, if needed, on the same day. At the end of the clinic, patients were given a 'goody bag' containing emollients before leaving, said Dr Bailey. 

She said that the results from the satisfaction survey were "really good". "What I'm really proud of is that, not only have we improved patient care, but the doctors, particularly those in training, had a really good and rare opportunity to get an education by seeing so many patients with mycosis fungoides in 1 day."

The quality of learning for the doctors was "massive" but also, "it was an efficient and nice way of working with everyone including the nursing staff said they'd enjoyed a day at work," said Dr Bailey. 

Patients reported that they felt involved as much as they wanted to be in decisions about their care and treatment at the MF-CTCL clinic (78%), that different clinicians worked well together to deliver the best possible care (96%), and that they were able to discuss any worries and fears with staff during your visit (87%).

Clinicians provided qualitative feedback on the super-clinic. Comments included that, "clinician knowledge may not be up-to-date when seeing rare conditions such as MF-CTCL. This multi-disciplinary clinic increased knowledge and confidence." The structure of the clinic was also welcomed, with, "30-minute appointments that allowed clinicians to float between the rooms and maximise learning opportunities," said one clinician participant.

Catching Misdiagnosed Patients

In terms of MF-CTCL diagnosis, the collaborative working meant that the clinicians ruled out a number of patients who didn't actually have the disease. Dr Harry Heath, MB BS, dermatology registrar, also based in Truro, noted that, "usually doctors see one or two such patients per year due to its rarity, to a really condensed level of learning during this day. It makes us so much more aware. We know which tests to order because we've spoken face-to-face with haematologists, and know what to look for histologically."

The clinic's success has led to the creation of two MF-CTCL nurse posts, the appointment of a dermatology pharmacist, a patient-initiated follow-up (PIFU) process, and the adoption of this model in other areas of dermatology such as inflammatory conditions. The model is also being rolled out in other centres, including Exeter, and has also been adopted for other complex diseases.

"We propose to run this clinic annually to ensure that all MF-CTCL patients have appropriate investigation, staging, and management pathways," said Dr Bailey. 

Dr Bailey adds that the MF-CTCL super-clinic was made possible due to the support of local NHS management and a joint working collaboration with Recordati Rare Diseases. Drs Bailey, and Heath have no disclosures other than Recordati Rare Diseases RDD administrative support for the above study. Dr Wain has no relevant disclosures.  


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