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Involving patients in developing chemotherapy services

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Radical and palliative treatments for bowel cancer include the administration of IV cytotoxic chemotherapy, adjuvant to other modalities, such as radiotherapy and surgery.

  • This article has been double-blind peer reviewed
  • Figures and tables can be seen in the attached print-friendly PDF file of the complete article found under “related files”

ABSTRACT
Marshall, C., Warnock, C.
(2008) Involving patients in developing chemotherapy services. This is an extended version of the article published in Nursing Times; 104: 10, 31-32.
This article describes how patients with bowel cancer were given the opportunity to have a reduced inpatient stay to receive cytotoxic chemotherapy treatment. This initiative not only resulted in positive experiences for patients, but also provided significant development opportunities for nursing staff. Improvements in clinical competence, teaching and communication have enhanced the rapport between nurses, patients and relatives. Developing patient information was crucial to the project’s success – involving patients in the type and content of information needed has led to the provision of a unique, patient-centred resource.

AUTHORS
Catherine Marshall, RGN, SCM
, is ward sister and Macmillan colorectal nurse specialist; Clare Warnock, RGN, is practice development sister; both at Weston Park Hospital, Sheffield.

Introduction

Radical and palliative treatments for bowel cancer include the administration of IV cytotoxic chemotherapy, adjuvant to other modalities, such as radiotherapy and surgery. The drug regimens are complex and time-consuming to administer, requiring patients to be in hospital for about three days. Most of these patients are, however, relatively well, but may have a limited life expectancy. Some are still employed and the majority have busy and active lives. Patients frequently describe how they hope to maintain their current lifestyle while receiving treatment.

Apart from altruistic reasons to treat patients most effectively, The NHS Cancer Plan (Department of Health, 2000) set some targets to be met by 2005. These included a maximum one-month wait from diagnosis to treatment for all cancers and a maximum two-month wait from urgent GP referral to treatment for all cancers. The plan encouraged providers to examine and redesign current services using vision and innovation to meet these targets and advocated that ‘services need to be streamlined and new approaches are needed to make the best of skills in the cancer workforce’.

The Cancer Capacity Coalition (2006) identified that increases in demand for services, improved treatability, reduction in waiting times and implementing NICE guidance presented opportunities for role and service redesign. These factors prompted a review by the hospital’s dedicated cytotoxic chemotherapy pharmacist of the ways in which such treatment could be administered to patients with bowel cancer in a regional centre. She had identified that Weston Park Hospital gave more inpatient chemotherapy than other comparable sites in the country and the review sought to determine for which cancers these were. It found that bowel cancer treatments were among the most common chemotherapy treatments given, and other centres had adapted the regimes. The review concluded that some chemotherapy regimes given on an inpatient basis could be adapted, by giving one of the drugs (fluorouracil) differently.

Fluorouracil is the first-line treatment for colorectal cancer but, if it is unsuccessful or not tolerated, second-line agents are used. These drugs are given as a short infusion to palliate symptoms and are intended to improve the quality of life rather than the quantity of life expectancy.

In the new method, fluorouracil is administered as a 48-hour continuous infusion through a peripherally inserted central catheter (PICC) instead of a cannula. It is given via a small, light, easy-to-carry infusor device, about the size of a baby’s feeding bottle, which delivers a pre-regulated dose of the drug continuously over two days. A PICC line is inserted by nurses at the hospital, a day or two before, which can remain in situ for up to 18 months. This allows patients to go about their normal life while the drug is being administered. Oxaliplatin, another drug in the regime, is administered as a solution and infused over two hours (also through the PICC) at the hospital, before the infusor is attached.

Patients must have a relative or friend who is willing and able to be taught how to disconnect the infusor and care for the PICC line at home. This involves redressing and flushing it with sterile saline to maintain patency in between visits to the hospital.

Service development
The management team, which consisted of medical and nursing managers, discussed the feasibility of reducing inpatient treatments with the ward that administered the most, with a view to using inpatient beds to accommodate these patients. This was because the day case unit was at that time taking its capacity of outpatient work.

A six-month trial period was used to pilot six patients having PICC line insertions and infusors. The skills and competence of staff needed to be addressed, along with the skill mix in the ward dynamics.

The ward closed four beds two years ago when the project first started. After six months, up to nine patients were being treated each day. An audit of the increased numbers referred for this method of treatment and pressure from nursing staff managed to release further beds in May 2007. The inpatient ward, which originally had 30 beds, reduced its inpatient facility to 18, with 12 chairs ring-fenced for these day patients, named ‘short stay’.

The pharmacy staff and managers looked at other chemotherapy regimes that could be adapted to fit into a few hours’ duration rather than an overnight or even a few days’ inpatient stay. The 12 beds now accommodate patients having chemotherapy for upper gastrointestinal cancer, lymphomas and cervical cancer. The pathways for preoperative bladder cancers and testicular cancers are currently being developed. These have been adapted easily due to the current success of the short-stay unit, staff development and information produced for patients (see below). An audit of patient satisfaction encouraged the unit to proceed with adapting other chemotherapy regimes, along with financial and political pressures to reduce inpatient stays.

Challenges

The challenges facing nursing staff have been:

  • Educating and supporting patients and family members during cancer treatments within this framework, which has been greatly reduced from three days to three hours;

  • Teaching technical care of the PICC line, which involves:
    o Understanding asepsis, potential complications of thrombus formation and safe waste management issues of the cytotoxic drug infusor;
    o Producing packages of resources to support patients and their families, including relevant and adequate patient information.

The importance of providing clear information to patients and carers has long been established as the cornerstone of quality cancer care. This was highlighted by the Calman and Hine report (1995) and the National Cancer Alliance (1996), which both stressed the importance of tailoring information to the individual’s needs, in terms of quantity, format and timing, from the point of diagnosis onwards.

Moody (2003) acknowledged that this aspiration is difficult to achieve due to shorter hospital stays. However, patients have more contact with nurses than other clinical staff, so nurses are ideally placed to meet this need.

The challenges facing senior nurses on the ward and the practice development team have been:

  • Developing staff education and training programmes in practical skills for central line care and assessing their competence in teaching this to patients and relatives;

  • Maintaining morale and oncology skills for the nurses caring for inpatients on the ward, ensuring effective skill mix and clinical supervision;

  • Establishing communication channels and effective ways of working between the wider multidisciplinary team involved in these patients’ care.

Action plan

Devising appropriate patient information
The information and educational material originally produced for patients having chemotherapy whose treatment is described as ‘short stay’ included printed leaflets on a range of topics such as contacting the hospital for advice if problems presented, mouth care advice and information on potential side effects of the specific chemotherapy drugs used. A personalised timetable of landmark events in each patient’s treatment plans, such as outpatient appointments for phlebotomy and prescription generation, and the days on which the relatives had to redress the line and disconnect the infusor, were also given.

Although written information is a valuable resource for many patients, the Basic Skills Agency’s (2003) findings suggested an estimated 24% of the population lack language and literacy skills. Any written information must therefore be inclusive for this group and those for whom English is not their first language.

A life-size model of the PICC line with the dressing in situ, detailing the step-by-step order of actions to be taken during the procedure, was displayed on the short-stay unit wall. Much of the information needed was technical and therefore needed to be specific, unambiguous and in written form, for patients and relatives to take away to refer to at home. Written guidelines on flushing and redressing the line and disconnecting the infusor were produced for relatives and community nursing staff. These included drawings and descriptions of the equipment used. It was emphasised that community staff should, however, only be called on in exceptional circumstances, for example, when relatives were ill. This would help increase the family’s confidence and reduce infection rates. Relatives were highly motivated to learn the practicalities of PICC line care, as the alternative is a three-day hospital stay for patients. This also means family members are more involved in the patient’s cancer journey.

Thought was given to people’s different learning preferences. Some like demonstrations, while others prefer assimilating information by listening or reading. Reece and Walker (2004) stated that psychomotor skills are usually learnt from a demonstration, preferably backed by written information. After being shown how to care for the PICC line when patients attend for their first cycle of chemotherapy, relatives then return to the short-stay unit two days later. They are observed and assessed by a nurse on redressing and flushing the line, and then disconnecting and disposing of the empty chemotherapy infusor.

To date, only two relatives have either declined to continue the care at home or have been assessed as unsuitable to perform the necessary tasks. Nurses on the unit must have the knowledge, skills and confidence to assess relatives as competent to care for the line, and to advise them if they have problems. Low rates of both infection and accidental line dislodgement suggest the current information methods are suitable.

Christman et al (2001) and McDaniel and Rhodes (1997) have argued that information written from the patient’s, rather than the caregiver’s, point of view can enhance understanding. Whereas healthcare staff usually give procedural information and describe events, patients provide sensory information that describes their perception of the experience. McDaniel and Rhodes (1997) believed that this sensory information is crucial in designing information used to teach and support patients, and quoted research in which patients prepared in this way experienced less discomfort and an increased ability to cope. Christman et al (2001) described trials in which such patients had shorter hospital stays, improved coping strategies and resumed ‘normal’ activities at an earlier stage in their recovery.

Our patients support each other during their visits, offering tips and suggestions on living with the PICC line and infusor. Realising the potential of this information led to the production of a photographic journey, which includes:

  • The layout of the day-case unit where the PICC line is inserted;

  • The procedure of PICC insertion;

  • The dressing used to secure the PICC line;

  • The equipment used to redress and flush the line;

  • The administration of infusional chemotherapy;

  • How the infusor is worn by patients when they are ready to go home.

The patients involved in the photographic journey were all enthusiastic about being included in future patients’ education and offered their own objective description of the procedures and events of their personal journey. Each photograph is accompanied by an explanation from both the nurse’s and the patient’s viewpoint. Fig 1 gives an example of a picture from the photo journey; examples of nurse and patient comments are given below.

Nurse comment
‘The nurse will change your dressing before the start of your chemotherapy and check that the line has not moved since last time. The date of the dressing change and length of your PICC is written on the dressing. You must keep your arm straight when the infusor is attached to allow the chemotherapy to infuse.’

Patient comment
‘It got so that I was dreading having the cannula put in every time. I can plan my work around these appointments and even go on holiday, as long as I take the dressings with me, so having chemo now is just a nuisance rather than a big deal.
‘It takes my wife 20 minutes to do the dressing when the nurse here does it in two. I put a pop sock on my arm to stop the line getting caught around the door handle.’

Photo album
Currently, the photo album is used within the short-stay unit, when patients first attend for treatment. It would also be useful as a reference for patients, relatives and doctors to better describe and understand the pathway at initial outpatient visits, and there are plans to produce more copies for wider distribution.

Evaluation

Satisfaction audits of patients undergoing treatment are carried out regularly. They show a continued preference for the new administration method. Comments include details of nursing care, such as: ‘The staff are always washing their hands, I’ve never known such cleanliness,’ and: ‘I feel as though I’ve known every step of the way what is going on and the staff are always willing to explain things.’ The number of patients receiving chemotherapy in this way has increased from 64 in October 2006 to 141 in October 2007 (saving a total of 2,102 occupied bed nights for that period).

Conclusion

Overall, the service redesign has led to a range of positive outcomes for patients and staff:

  • Patients report that receiving cytotoxic chemotherapy via a PICC line has been preferable to staying in hospital for three days;

  • The number of patients the hospital has been able to treat has increased;

  • The challenges of teaching relatives how to care for the PICC line and infusor have been addressed by nursing staff providing relevant and appropriate information, such as verbal instructions, demonstrations, assessment of competence, visual aids and the inclusion of other patients as a source of education;

  • Relatives feel included in treatment options and have developed better relationships with staff;

  • Nurses working on the unit have expanded their skills and provide more holistic care to other patients with cancer through the training received;

  • The hospital has recouped a significant number of occupied bed days in order to use treatments for other patients more effectivelyIn addition, the service has been extended to include a wider range of chemotherapy regimes for different cancers.

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