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Providing patient choice: a nurse-led haematology outpatient service

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Angela Allsop, RN.

Haematology Community Liaison Nurse

Autologous peripheral blood stem cell transplantation (PBSCT) is the type of bone marrow transplant in which the donor and the recipient are the same person. The patient's own stem cells are removed from the peripheral blood and subsequently re-infused back into the patient after high-dose chemotherapy.

Autologous peripheral blood stem cell transplantation (PBSCT) is the type of bone marrow transplant in which the donor and the recipient are the same person. The patient's own stem cells are removed from the peripheral blood and subsequently re-infused back into the patient after high-dose chemotherapy.

Autologous PBSCT has been shown to result in an increased response rate and a better survival rate for people with lymphoma, Hodgkin's disease and myeloma (Horowitz and Rowlings, 1997).

This type of transplant has historically been delivered as an inpatient procedure, leading to many problems for the patients, mainly psychological in nature (Jagannath et al, 1997).

In 1998 the clinical haematology unit at Birmingham Heartlands and Solihull NHS Trust (Teaching) introduced an outpatient autologous PBSCT home service in the UK.

Successful outpatient autologous PBSCT had been reported in the USA and Canada, with US studies confirming the feasibility of the service (Jagannath et al, 1997). Further published benefits in terms of improved quality of life, cost-effectiveness, particularly in the reduction of bed occupancy, and the potential for a reduction in the number of hospital-acquired infections, led to the introduction of the service in the Birmingham trust. This type of transplant has resulted in a reduced period of neutropenia and toxicity (Peters et al, 1994).

This service aims to promote this area of clinical haematology as suitable for specialist care in the community as recommended in current government policy (DoH, 1997).

Establishing the service
Initially a literature search was carried out on Medline and Cinahl databases; literature for this topic was limited and appeared to be predominately American. A retrospective study at Birmingham Heartlands and Solihull NHS Trust (Teaching) identified that over a two-year period, 25% of patients who had received autologous transplants would have been suitable for an outpatient transplant.

In order to develop the service two experienced haematology-trained nurses were employed. Further development of the service began with the production of a nurse-led business plan. A study visit to the USA, where this type of transplant is well established, was undertaken.

Funding for the service was difficult to find and was eventually provided by an educational grant supported by a pharmaceutical company, trust funds and Birmingham Heartlands Leukaemia Support Group.

The care team comprises:

- A haematology consultant

- A bone marrow transplant (BMT) research fellow

- Two haematology community liaison sisters

- A BMT co-ordinator

- A day-unit sister

- BMT unit staff

- A ward manager

- A hospital-based pharmacist

- The patient's carer.

The documentation of evidence-based practice proved challenging and difficult to obtain in relation to haematology outpatient transplants. This type of service is not established in the UK and therefore guidelines and policies have been developed specifically for this care pathway. Record-keeping follows the Nursing and Midwifery Council's guidelines (2002).

Patient-selection criteria
Characteristics of patients considered suitable for outpatient autologous PBSCT are outlined in Box 1.

Home-care requirements - Geographically, the patient must reside within 30 minutes' travelling time of the hospital to allow urgent admission if required. Patients living outside the parameters are accommodated in a rented house two miles from the hospital base. The patient must have a carer/carers in attendance at all times, have access to transport and a telephone.

An education and information package has been devised to assist patients and carers with:

- The treatment and care pathway

- Care of the central venous catheter

- Self-administration of oral medicines

- Monitoring body temperature

- Nutritional awareness and food hygiene

- Cross-infection awareness

- Sexuality

- Emergency contact

- Psychological support network.

Patients are advised not to visit public places, such as supermarkets, or to receive visits from friends or family with infections during treatment.

A pre-transplant interview and assessment involves a home visit by the liaison sisters to assess the patient's and carer's needs, psychological status and home environment for safety reasons. The treatment is discussed and planned with the patient and carer on an individual basis throughout their care.

The role of the haematology liaison sisters
Box 2 sets out the role of the liaison sisters.

Drug administration in the community
To ensure good venous access for the administration of treatment the use of central venous catheters, such as a Hickman-type catheter, is specified. The insertion of the Hickman-type catheter is carried out in the day unit using local anaesthesia and sedation.

The catheters are subcutaneously tunnelled and inserted at least one week before the transplant to enable wound healing to take place and identification of potential line insertion problems, such as pneumothorax, haemothorax, air embolism, cardiac arrhythmias, cardiac tamponade, thrombosis and infection. To ensure continuity of care in the home setting and in hospital a central line care operational policy is followed (BHS NHS Trust, 1998a).

The importance of assessing the client's ability and the willingness to learn to care for their central line is an essential element (Otto, 1994) and all patients and carers are instructed and educated in this.

To address practice and safety issues several policies for the administration of drugs in the community have been developed (BHS NHS Trust, 1998b; 1998c).

Peripheral blood stem cell collection and re-infusion - Before a transplant, stem cells are mobilised into the peripheral blood by using a haemopoietic growth factor and/or cytotoxic chemotherapy to increase the total white blood cell count to 4x109/L or above. The CD34 cell count is also measured and would be required to be above 10x106/kg at the time of cell collection. The CD34 cells for re-infusion are re-calculated and required to be 2x106 CD34+ cells/kg. The cells are collected using a Baxter CS 3000 machine. The stem cells are then cryo-preserved in liquid nitrogen until required. The next phase involves the administration of high-dose chemotherapy in order to eradicate the underlying disease. The stem cells are defrosted and re-infused rapidly, to prevent deterioration of the cells, 24 hours after the last dose of chemotherapy and re-infused in the day unit.

Cytotoxic chemotherapy
Cytotoxic drugs are toxic substances that are used deliberately to destroy rapidly dividing cells such as cancer cells. High-dose chemotherapy is administered with the aim of destroying the malignant cells within the bone marrow. However, cytotoxic drugs are not selective for malignant cells and both normal and malignant cells are affected. The most common physical side-effects observed are to the bone marrow and digestive tract as these tissue have a high self-renewal rate (Schwartsmann et al, 1988). Most of the chemotherapy is administered in the outpatient day-care unit rather than the patient's home due to the length of time of administration.

Management of treatment side-effects
Neutropenic phase/febrile episode - Prophylactic oral antimicrobial medications are admini-stered at the beginning of treatment:

- Ciprofloxicin 500mg/twice daily

- Aciclovir 200mg/six hourly

- Fluconazole 100mg/daily.

If a febrile episode occurs (the patient will have a temperature greater than 388C):

- Record and monitor vital signs to indicate sepsis

- Take blood samples for cultures, C-reactive protein, galactomannan assay

- Take swabs/collect specimens from throat, catheter exit site, urine, stool and any focal point of infection for microbiology, culture and sensitivity

- Admit to BMT unit for medical assessment:

- Examine the patient, paying particular attention to skin, catheter exit site, chest, oral mucosa and perineum

- Chest X-ray

- Start empirical antibiotics:

- Ceftazidime 3g/twice daily intravenously

- Gentamicin 6mg/kg daily intravenously (BHS NHS Trust, 1998d).

Patients who are clinically asymptomatic can remain at home where intravenous antibiotic therapy can be administered. Those who remain pyrexial need to have repeated blood cultures taken and chest X-rays are repeated every three days.

Changes in antibacterial therapy are guided by the results of blood cultures after discussion with the microbiologist.

Potential side-effects
Nausea and vomiting - Anti-emetic therapy is administered to all patients (Box 3).

Patients are encouraged to drink up to three litres of fluid a day to maintain adequate diuresis; however, this is seldom achieved due to nausea and vomiting and intravenous fluid supplements are administered. A fluid chart is maintained by the patient to record daily input and output.

Anaemia - Blood is taken for a full blood count daily. A haemoglobin level of <9g l="" will="" indicate="" the="" need="" for="" a="" transfusion.="" blood="" is="" filtered,="" irradiated="" and="" administered="" in="" the="" day="">

Thrombocytopenia - A daily assessment of the patient for haemorrhagic signs and a daily full blood count will indicate transfusion requirements:

- Platelet count 10x109/L or below

- Platelet count >10x109/L and patient is haemorrhagic and/or pyrexial.

Patients can be transfused either at home or in the day unit, depending on the time the platelets are delivered to the hospital from the blood transfusion service.

Mucositis - Oral mucositis is one of the most common side-effects but mucositis can occur throughout the gastrointestinal tract. Symptoms are nausea, vomiting, epigastric discomfort, altered bowel habit and diarrhoea. The effects are usually observed 7-14 days after cytotoxic drug administration and patients tend to recover completely between days 14 to 21.

Oral mucositis - Prophylactic mouth care is self-administered using the regimen described in Box 4.

A daily oral assessment is carried out using a numerical and descriptive guide adapted from Eilers et al (1988).

Psychological care
Each patient and carer has an individual consultation with the consultant and the haematology liaison sisters to discuss treatment, side-effects and potential outcomes. Additional psychological support is available from the ward support sister and a visiting psychologist.

A patient support group enables patients to talk to each other, helps with financial issues and arranges regular outings for patients and their families.

An education and information package is provided and discussed followed by a home visit for further assessment to encourage the building of a partnership in care.

Autologous PBSCT can have a major psychological impact. It is important to emphasise that each patient has individual needs and the psychological assessment for this specific service has proved difficult because an appropriate assessment tool has not been identified for our specific patient group.

Data from an unpublished, two-year nursing research study at Birmingham Heartlands Hospital comparing the psychological and physiological side-effects of in- and outpatient transplants are currently being analysed. A study by Campbell (1999) that explores the feelings of oncology patients nursed in protective isolation following chemotherapy also highlights psychological issues.

Admission to hospital - Potential reasons for patients' admission to hospital are listed in Box 5.

Patients are visited and assessed twice daily by the haematology sisters and have a daily medical assessment. They have 24-hour telephone access to the haematology ward for enquiries, problems or advice. Medical records are kept in the ward and staff on each duty shift are informed of patients' details. Patients have their own held records.

Since the start of the service in October 1998 we have completed 45 outpatient transplants and the data reported below is for 39 of those patients.

There were 19 males with a mean age of 48 and 20 females with a mean age of 44 years. Two patients were withdrawn; the first patient developed medical complications and relapse of disease at the time of transplant. The second patient was withdrawn due to psychological instability.

Of the 39 patients, 46% had non-Hodgkin's lymphoma, 23% had myeloma, 18% had Hodgkin's disease and 13% had chronic lymphatic leukaemia.

All of the 39 patients required blood product support. All received prophylactic oral microbial medication; seven patients did not experience febrile neutropenia. When the service began all patients who developed a neutropenic fever were admitted to hospital, but as the service has developed patients are now able to stay at home with a neutropenic fever if there are no medical contraindications.

Nutritionally, patients continue to have difficulty maintaining a well-balanced diet due to the well-documented side-effects of chemotherapy. (Henry, 1997). Home care allows flexibility and personal choice with regard to dietary needs.

Each patient has a daily oral assessment using the guide scoring system (Eilers et al, 1988). The results show 8% had no mucositis, 32% had mild, 38% moderate and 22% had severe mucositis.

On average an autologous transplant takes approximately 21 days. This service has saved the unit over 645 bed occupancy days, allowing a more efficient use of acute haematology beds and a reduction in the waiting list for patients.

Following discharge, each patient was asked to complete an anonymous and confidential patient-satisfaction questionnaire. The results have shown positive responses towards the service. Patients appreciated having the choice of staying at home and having a degree of control over their daily activities. They also welcomed the nurse support provided. However, on evaluation the questionnaire requires restructuring to enable more constructive and detailed feedback on the patients' experiences.

Implications for the nurse
Setting up the service has proved an eventful and challenging experience for the team. The increase in autonomy for the nursing staff has proved demanding but rewarding. The production of a business plan and documentation has led to professional development and the attendance at a variety of nursing conferences to present papers on the service has increased confidence.

This service has generated interest in other haematology/BMT centres in Europe and the UK.

Safety issues have been identified for staff. In order to minimise risks specific guidelines have been developed. The liaison nurses are provided with a mobile telephone as a link to the hospital and a diary system so that the team know each others' whereabouts when in the community.

Multidisciplinary team meetings prevent the nurses being isolated from the clinical team.

This service has proved that it is possible to provide autologous PBSCT on an outpatient basis. Since October 1998 we have completed 45 outpatient transplants. Patients have expressed satisfaction with having the choice of whether to stay at home or be admitted to hospital for their transplant. This in turn has improved quality of care issues in line with Calman-Hine report (DoH, 1995) and The New NHS (DoH, 1997).

The continuation of this service is dependent upon financial support, staff commitment and patient satisfaction, all of which are under continual review.

Birmingham Heartlands and Solihull NHS Trust (Teaching) Clinical Haematology Directorate. (1998a)Care of the Hickman Line Catheter. Operational Policy. Birmingham: BHS NHS Trust.

Birmingham Heartlands and Solihull NHS Trust (Teaching) Clinical Haematology Directorate. (1998b)Administration of Intravenous Drugs in the Community. Operational Policy. Birmingham: BHS NHS Trust.

Birmingham Heartlands and Solihull NHS Trust (Teaching) Clinical Haematology Directorate. (1998c)Administration of Cytotoxic Chemotherapy in the Community. Operational Policy. Birmingham: BHS NHS Trust.

Birmingham Heartlands and Solihull NHS Trust (Teaching) Clinical Haematology Directorate. (1998d)Management of the Neutropenic Patient with a Fever. Operational Policy. Birmingham: BHS NHS Trust.

Birmingham Heartlands and Solihull NHS Trust (Teaching) Clinical Haematology Directorate. (1998e)Cytotoxic Chemotherapy Emesis Control. Operational Policy. Birmingham: BHS NHS Trust.

Birmingham Heartlands and Solihull NHS Trust (Teaching) Clinical Haematology Directorate. (1998f)Mucositis Pain Control. Operational Policy. Birmingham: BHS NHS Trust.

Campbell, T. (1999)Feelings of oncology patients about being nursed in protective isolation as a consequence of cancer chemotherapy treatment. Journal of Advanced Nursing 30: 2, 439-447.

Department of Health. (1995)A Policy for Commissioning Cancer Services. A report by the expert advisor group on cancer to the chief medical officers of England and Wales (Calman-Hine report). London: The Stationery Office.

Department of Health. (1997)The New NHS: Modern, dependable (White Paper). London: The Stationery Office.

Eilers, J., Berger, A.M., Petersen, M.C. et al. (1988)Development, testing and application of oral assessment guide. Oncology Nursing Forum 15: 325-330.

Henry, L. (1997)Immunocompromised patients and nutrition. Professional Nurse 12: 9, 655-659.

Horowitz, M.N, Rowlings, P.A. (1997)An update from the International Bone Marrow Transplant Registry and the Autologous Blood and Marrow Transplant Registry on current activity in haemopoietic stem cell transplantation. Current Opinions in Haematology 4: 395-400.

Jagannath, S., Vesole, D.H., Zhang, M. et al. (1997)Feasibility and cost- effectiveness of outpatient autotransplants in multiple myeloma. Bone Marrow Transplantation 20: 445-450.

Nursing and Midwifery Council. (2002)Guidelines for Records and Record Keeping. London: NMC.

Otto, S. (1994)Chemotherapy. In: Ladig, D. (ed.). Oncology Nursing (2nd edn). London: Mosby.

Peters, W.P., Ross, M., Vredenburgh, J.J. (1994)The use of intensive clinic support to permit outpatient autologous bone marrow transplantation for breast cancer. Seminars in Oncology 21: 25-30.

Schwartsmann, G., Winograd, B., Pinedo, H.M. (1988)The main steps in the development of new anticancer agents. Radiotherapy and Oncology 12: 301-313.

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