Patients in Focus - Winning entry 2004

28/05/04 : Gill Jackson, Paediatic CNS & Jo White CNS , General Infirmary at Leeds

Gill Jackson – Children’s Rheumatology Nurse Specialist
Jo White – Rheumatology Clinical Nurse Specialist General Infirmary at Leeds

Background

The Rheumatology Department within the Leeds teaching Hospitals NHS Trust is a large regional unit catering for several thousand patients suffering from Rheumatoid Arthritis (RA). For the majority of patients methotrexate is the first DMARD of choice, but unfortunately for some, oral therapy has been sub-therapeutic or has incurred significant side effects (Arthur et al 2002, Bingham et al 2003). Research has indicated that sub-cutaneous administration of methotrexate has 10-12% increased absorption over oral preparations (Bannwarth et al 1996, Cleary et al 2003), and other studies have indicated that this mode of delivery has fewer side effects. (Conte et al 1987, Jundt et al 1990, Zackheim 1992, Wallace 1994) Consequently, over the last four years it has become part of the established treatment protocol in Leeds for patients who have side effects or do not respond to oral methotrexate, to be switched to weekly sub-cutaneous methotrexate injections.

So what was the problem?

For many patients this mode of treatment has worked extremely well, however there were some adverse consequences for both the patients and the service.

Problems for patients with RA

Changing to sub-cutaneous methotrexate obligated patients to weekly attendance at the outpatient’s clinics at Leeds General Infirmary. This is a large and busy hospital with big parking problems in the centre of the city. Patients found themselves travelling large distances each week; some lived as far away as Hull, at a time when many were feeling very unwell and vulnerable. Not only was this time consuming, it was also expensive. Other patients had difficulty with childcare or taking time away from work. The clinics were extremely busy and getting busier which inevitably led to prolonged waiting to receive the injection. Although the patients were grateful for the care they received during their consultations, they also discussed these problems with the clinical nurse specialist.

Problems for the service

Historically, within the Leeds Teaching Hospitals the clinical nurse specialists within the department have given all the methotrexate injections, and over the past four years the number of patients requiring methotrexate injections has risen exponentially. The system was becoming saturated and increasingly costly in both nursing and pharmacy time. It also meant that the clinical nurse specialists were not able to devote their time to providing patient education and other nursing interventions. This left them feeling that the quality of the nursing care they were able to provide was reduced, which led to feelings of frustration.

A shared problem?

As well as catering for adults with RA, Leeds General Infirmary also houses a dedicated Paediatric Department. This unit provides a tertiary service for children and young people throughout the Yorkshire region, including those with Juvenile Arthritis. Weekly methotrexate is an established treatment for this and a number of other paediatric rheumatological conditions and it has transformed the outlook for most children with severe disease (Wallace 1994). In children and adolescents compliance is often a problem and this issue had been addressed by offering these families methotrexate by injection.

A conversation between the adult and paediatric clinical nurse specialists led to the realisation that they and their patients were experiencing similar problems. The majority of children on methotrexate were given their injection by their local children’s Community Nurses and they had to wait at home for the community staff to appear. Those attending hospital had to attend weekly and this caused the same problems as those experienced by the adults. This was causing significant disruption to school attendance and the working lives of their carers.

A possible solution?

A pilot study had been set up in which a small number of paediatric patients had been offered a package of care that enabled them to self-administer their injections of methotrexate at home. Initially they were taught the injection technique by the paediatric outpatient staff. The methotrexate was provided in pre-dosed syringes and these were collected in batches form the hospital pharmacy. The initial reaction from the children and carers was positive and so it was decided that this model would be a good strategy to replicate in adults with RA.

Setting the service up

There were many issues to be considered. These included development of the education package, storage, disposal of waste, dispensing the drug. It was decided that a partner from outside the Trust would be needed and so the clinical nurse specialists from both the adult and paediatric rheumatology departments, together with the rheumatology pharmacists formulated a business case. This was then submitted for Tender bids outside the trust. A Company was successful. Negotiations then took place with the successful company regarding specific requirements for the patients, the nurse specialists and the pharmacy department. This included the provision of a storage refrigerator in the patient’s home, supply of needles, cotton wool, gloves, spillage kits and arrangement for collection and disposal of all waste. It was decided that a 24-hour help-line for patients was a prime requirement as there may be problems with supplied ancillaries, or the patients have a query regarding their medication. The company agreed to set this up.

The educational package

The first requirement was to produce acceptable guidelines for the administration of injectable methotrexate for both children and adults. These were formulated by the nurses and the rheumatology pharmacists (Jackson et al 2002) and submitted to the Drugs and Therapeutics Department of the Trust who approved them (see Supporting Evidence). The guidelines contained a training package for the patient or carer. This ensures that the same information is given to all of the patients. It included general information about Methotrexate, collecting of the necessary equipment, preparation of the working area, preparation and administration of the Methotrexate injection, tidying up after administering the Methotrexate, and information regarding handling of spillage. There is also a training checklist that is completed after the patient has been taught, to ensure that all areas have been covered. The first patients were recruited onto the programme in 2002.

How does the service work?

The Rheumatologist or nurse specialist selects the patients suitable for the homecare methotrexate programme. The criteria for inclusion are quite simple. The patient or carer has to be willing to take responsibility for their drug and its administration; are physically able to inject; have suitable home circumstances. The patient (or carer) is then taught, supervised and assessed using the Training Package The length of time it takes for the person to become competent varies from person to person. Some take as little as four weeks, others much longer. Once training is completed, the person instructed and the nurse specialist who has taught them sign the consent form, checklist and Certificate of Instruction. One copy is then filed in the patient’s case notes, and one copy given to the individual. Methotrexate is ordered on a dedicated prescription form completed by the nurse specialists, checked and signed by the individuals Rheumatologist or Registrar and designated pharmacist. These are then forwarded to the partner company, who in turn contacts the patient (or carer) to arrange a convenient delivery time for the drugs and ancillaries. The patient’s blood tests continue to be monitored as per regional guidelines, either within the hospital or in primary care.

What do the patients think?

The service has now been running very successfully for over a year. 150 adult and paediatric rheumatology patients are currently using the service across the city. To assess the effectiveness and any deficiencies in the programme, a study has recently been undertaken (White 2004). The research is of questionnaire design using both closed and open-ended questions. The cohort included all the adult patients using the service. Of the one hundred and seventeen patients surveyed ninety-three replied, a response rate of 79.5%. The results demonstrate that the majority of patients would not choose to return to hospital for their injections. Over 90% were satisfied with the service as a whole, and over 90% felt that Partner Company were efficient at delivering their supplies on time and were helpful with aftercare regarding their medication. (The full results of this study will be published at a later date). A sample of quotes from the open-ended questions shows a very positive result (see supporting evidence).

Conclusion

This has been a very successful implementation of a complex package that has involved the collaboration of many specialities. It has taken much time and determination from all those involved in the negotiations, the writing of the teaching package and guidelines. However, it has all been worthwhile, given the very positive feedback from the users. Patients are overwhelmingly in favour of giving their own injections of methotrexate in the comfort of their own homes; it saves them time, money, energy and it is more convenient. Importantly, it also gives the patient back a feeling of control. As one patient put it ‘By doing the injections at home it has given me some independence back’ In the future it is hoped that the Yorkshire Regional Paediatric patients will be included in the programme, and that the Gastroenterology and Dermatology patients can also benefit from the service encouraging an even more collaborative approach between specialities.


References

    Arthur V, Jubb R, Homer D, 2002, A study of parenteral use of methotrexate in rheumatic conditions. Journal of Clinical Nursing. 11, 256-263
    Bannwarth B, Pehourcq F, Schaeverbeke T, Dehais J, Clinical Pharmacokinetics of Low-Dose Pulse Methotrexate in Rheumatoid Arthritis. Clinical Pharmacokinet. 30(3) 194-210.
    Bingham SJ, Buch MH, Lindsay S, Pollard A, White J, Emery P, 2003, Parenteral methotrexate should be given before biological therapy. Rheumatology. 42: 8: 1009-1010.
    Conte J, Miller L, 1987, Subcutaneous weekly MTX is superior to oral administration for rheumatoid arthritis. Arthritis & Rheumatism. 3(1) supplement.
    Zackheim HS, 1992, Subcutaneous administration of Methotrexate. Journal of the American Academy of Dermatology. Vol. 26, Part 6, 1008.
    Jackson G, White J, Parkinson S, Matthews N, 2002, Guidelines for administration of Methotrexate subcutaneous injection in paediatric and adult patients with inflammatory arthritis, or other rheumatological conditions, by the patient or carer in the home. Leeds Teaching Hospitals NHS Trust, unpublished.
    Jundt J, Browne B, Mock D, Fiocco G, Steele D, 1990, Methotrexate pharmacokinetics in rheumatoid arthritis. Arthritis & Rheumatism. 33(9) supplement.
    Wallace CA, 1994, New uses of Methotrexate. Contemporary Pediatrics. 11(4), 43-53.
    White J, 2004, A survey of patients’ attitudes towards taking part in a methotrexate self-administration programme. School of Healthcare Studies, University of Leeds (unpublished Masters thesis).