Patient Day 2010

Rotherham Photopheresis Unit: Our first "Patient Day"

1. Rotherham Photopheresis Unit.

The nurse lead photopheresis unit at Rotherham Gen-eral Hospital in the UK has been operating since 1994 and recently became a Centre of Excellence. It accepts referrals from Yorkshire, Scotland, Birmingham, Leeds and Manchester. Patients at the Rotherham photopheresis unit are primarily treated for steroid refractory Chronic Graft versus Host Disease (CGvHD) and Cutaneous T-cell Lymphoma (CTCL). The treatment received is Extracorpo-real Photopheresis (ECP). This unit has been involved in re-search programmes lead by the consultant haematologist, from which data on the positive effect of ECP on patients with CGvHD has been identified. Data on CTCL has still to be formally presented.

In February 2010 we became the first UK hospital to treat paediatric patients for GvHD using the new Therakos Cellex integrated photopheresis system. This device allows us to treat patients with a low haematocrit and or body weight by using cross-matched compatible packed red blood cells to prime the centrifuge bowl before drawing blood from the patient, thereby reducing the extracorpo-real volume and keeping the patient’s fluid balance static.

2. What is Photopheresis?

Extracorporeal Photopheresis (ECP) involves drawing venous blood from the patient either peripherally or via a central line into the photopheresis machine where it is separated by centrifugation. Red cells, platelets and plasma are returned to the patient and a mononuclear rich leuco-cyte fraction is collected ( Fig. 1).

These leucocytes are treated with methoxsalen solu-tion, exposed to UVA light and afterwards returned to the patient. This treatment causes apoptosis of the diseased cells and although the actual mechanism of photopheresis is still unclear, one theory is that after the treated white blood cells are returned to the body, the immune system recognises the dying abnormal cells and begins to produce healthy lymphocytes. ECP is a non-toxic treatment with very few adverse reactions and importantly does not ap-pear to cause generalised immunosuppression in contrast to conventional drug treatments for CGvHD which increase the risk of infection and other serious complications.

The treatment schedule at Rotherham for patients with CGvHD consists of a standard regime of paired ECP treat-ments given two weekly for the first 14 weeks for CGvHD. These treatments are then titrated to patient response with follow up treatment continuing at four weekly intervals with the aim being to reduce the need for treatment as a positive response continues. Patients may be treated for 2 years or more. CTCL patients are treated on a monthly ba-sis until their condition stabilises.

3. What is GvHD?

GvHD is a common complication following haemopoet-ic stem cell transplant. The pathogenesis of GvHD involves the host tissue being perceived as foreign by donor-derived T lymphocytes. If prophylaxis and immunosuppressive drug treatment fails the condition may be fatal due to loss of organ function or concurrent infection. Acute GvHD oc-curs within 100 days of transplant whereas chronic GvHD starts approximately100 days to 1-year post-transplant. Chronic GvHD is far more commonly treated by ECP than the acute form.

Symptoms are many and vary in severity from patient to patient. Single or multiple organs may be attacked, such as the eyes, the liver, the entire gastrointestinal tract and the genital area (especially in females). The joints may also be affected and sometimes other organs of the body, including the lungs and kidneys. Skin involvement charac-teristically progresses to take on a thick, scarred, contrac-ture-like appearance resembling scleroderma which is highly debilitating for the patient.

4. What is CTCL?

Cutaneous T-cell lymphoma is a specific type of non-Hodgkin lymphoma. CTCL is rare, accounting for about one in 20 of all cases of non-Hodgkin lymphoma. It is a cancer of T lymphocytes and most often occurs in people aged between 40 and 60. Unlike other forms of non-Hodg-kin lymphoma, CTCL mainly affects the skin. It is caused by the uncontrolled growth of a type of white blood cell with-in the skin called a T-cell (T lymphocyte).

If less than 10% of the skin is affected, there is a good chance of controlling the disease long term. If more than 10% of the skin is involved, or if the lymphoma has spread to the lymph nodes or a body organ, then this disease is un-likely to be cured. However it can often be controlled for a long time with the assistance of ECP treatment as well as other medical intervention.

Symptoms are less varied than GVHD but none the less debilitating. Skin inflammation is often widespread which gives rise to increased skin infections and very painful ex-tremely itchy skin, from which there is no respite. Skin involvement may vary from being slight to complete all-over redness with increased shedding. This condition leaves the patient lethargic and severely depressed.

5. So why have a Patient Day?

The varied symptoms experienced by our patients are extremely debilitating, making activities of daily living an enormous effort. By the time a patient reaches our unit they are chronically ill, immunosuppressed, and often feel-ing frightened and alone.

Over the last 18 months the referrals to our adult ser-vice have rapidly increased, and it was whilst treating a new group of patients who had all been referred to our unit around this time that the concept of organising a Patient Day began to take place. The ECP treatment takes approx-imately three hours to complete, and so these particular patients were able to talk to each other extensively about their symptoms, how they felt, how they adapted their lives and how difficult it is to live with a life threatening chronic illness.

These patients were over whelmed by how much better they felt, just talking to another person who had similar experiences and understood their perspective. The nursing staff in the unit also became actively involved in this dis-cussion and the unanimous decision was made that a Pa-tient Day was a much needed requirement, to support and inform our patients. Some months later once funding had been approved the planning of the Patient Day began.

6. Planning our "Patient Day"

Both GvHD and CTCL are rare conditions and because of this rarity, information regarding the symptomatic treat-ment of these conditions is sparse. Our patients not only wanted information about their illness, but how to deal with the accompanying severely debilitating symptoms. The agenda for the Patient Day was therefore arranged around symptomatic issues as well as medical and social problems. Unfortunately not all requests could be included in just one day. It is hoped therefore that another Patient Day may be arranged in the future.

The main aim of the day was to enable our patients to feel less isolated by talking to other patients in their posi-tion and to direct them to other health professionals who may be able to help them develop skills to cope more eas-ily. Health professionals were approached with the neces-sary knowledge and experience to assist us. Speakers included: our consultant haematologist; our research sci-entist; our nurse specialist from the Macmillan team to discuss pain issues; our specialist dietician; and a col-league from the Macmillan team from a neighbouring hos-pital who specialises in sensitive personal issues ( Fig. 2.)

‘‘The Look Good Feel Better’’ charity gave a demonstra-tion on applying makeup for the female patients as many patients with CTCL and GvHD suffer from negative body image issues.

Information stands were also included: there were stands from Rotherham Cancer Society regarding comple-mentary therapies to enhance patient well being; informa-tion from the Macmillan team regarding social benefits; a dietetic stand from Johnson and Johnson; an infection con-trol information stand; a dermatological stand regarding skin camouflage; and a Cellex device for patients to look at and ask questions about.

All patients were asked to complete an evaluation form at the end of the day; the generalised comments can be seen in Fig. 3.

7. Evaluation of our Patient Day

Evaluating the comments from our patients has been extremely useful. The majority of comments were very po-sitive. Constructive comments from the patient evaluation sheets highlighted several requests for a future Patient Day to be workshop based. This would allow the patient to be-come more involved in discussion with the specialist speaker making the presentation less generic and more fo-cused on the individual’s problematic symptoms. A work-shop based approach would ideally have fewer items on the agenda so that more time could be spent on each issue.

The speaker for the ‘sensitive personal issues’ was the only speaker who used a workshop approach to deliver her presentation; unsurprisingly this issue produced the most comments on the evaluation sheets.

One very important issue highlighted on the evaluation sheet from the ‘sensitive personal issues’ presentation was that all of our patients felt that there is a requirement for themselves and their immediate partner or carer to have the opportunity to talk to someone, either together or separately.

Our patients appeared very self conscious at the begin-ning of the workshop, therefore to draw out patient per-spectives the presenter asked a qualified nurse from the photopheresis unit (all four nurses and a health care assis-tant were present on the day) to join each group (four groups in total). She asked the designated nurse to talk to her specific group and ask them to write down a personal issue that worried them. The nurse then fed these issues back to the larger group.

Once this approach to the subject had been initiated and anonymous questions were discussed in general terms, then the feelings and problems that our patients had kept to them themselves began to emerge. Emotional issues were a priority to our patients, especially the stress they felt their partners have looking after them long term. Patients who were also parents of young children dis-cussed the anxiety of being a parent to a young child and not being able to be a ‘healthy parent’.

Sexual issues were discussed in general terms, and although many patients and partners did not feel that this was a major concern it was obvious that this part of their lives was severely compromised and had required adapta-tion. Comments from a table with predominately female patients raised the subject that there is no helpful advice regarding vaginal stenosis and they were not encouraged to discuss this problem or given the opportunity to talk to someone about it or be referred onto a specialist.

The Patient Day was enjoyed by all present and it has highlighted the requirement for more patient focused information days. Following our Patient Day, we have been approached by the Macmillan nurse involved in the sensi-tive personal issue presentation, to hopefully secure fund-ing for a training day for the qualified nurse on the topic of sexual advice for our patients.

Patients and partners are often embarrassed to broach this subject and so therefore it is not openly discussed with anyone, sometimes even each other. It is therefore sug-gested that specialist nurses who have close contact with their patients in settings such as apheresis are well placed to be the patient’s confidante.

If a detailed questionnaire regarding patient emotional, sexual and social well-being were incorporated into the routine assessment of the patient, it would give the patient the opportunity to voice any concerns. It would then be the health professional’s responsibility to take any question-naire response further should it be answered in the affir-mative. If the nurse is required to take these issues to the next level, then s/he must be confident that it can be dealt with effectively or the patient referred onto a specialist with the required experience.

Rotherham photopheresis unit: Our first "Patient Day". Maher, Tracy, Transfusion and apheresis science : official journal of the World Apheresis Association : official journal of the European Society for Haemapheresis, 44 (3), p.333-336, Jun 2011