An outline of the key findings of a systematic review of nurse led follow-up for cancer compared with conventional follow-up, and implications for practice
Ruth Lewis, MSc, BSc, is lecturer; Maggie Hendry, BA, is research fellow; both at Department of Primary Care and Public Health, North Wales Clinical School, School of Medicine, Cardiff University.
Lewis, R., Hendry, M. (2009) A systematic review of nurse led follow-up for cancer. Nursing Times; 105: 36, early online publication.
Nurse-led follow-up for cancer and other models are increasingly being used to reduce workload for outpatient clinics. This article reports the results of a recently published systematic review, which compared nurse-led follow-up with conventional doctor-led follow-up. The implications for practice are highlighted, and recommendations for further research are also made.
Keywords:Cancer care, Nurse led follow-up, Doctor led follow-up
- This article has been double-blind peer reviewed
- Patients value follow-up to allay fears of recurrence and to provide psychological support.
- Nurse-led follow-up appears feasible but new initiatives should incorporate an evaluation of patient outcomes.
- Patients appear satisfied with nurse-led follow-up, and patient-initiated or telephone follow-up could provide practical alternatives to conventional care.
In the UK, after completing their treatment, patients with cancer traditionally attend hospital outpatient clinics. Regular follow-up appointments may continue for many years.
The perceived benefits of routine follow-up include identifying recurrent disease, monitoring the effectiveness and side effects of treatment, managing co-morbidity and giving psychosocial support. Patients find it reassuring and value the support it provides (Cox et al, 2006; Rozmovits et al, 2004; Koinberg et al, 2002).
However, evidence shows that routine follow-up does not lead to earlier diagnosis of recurrence or improved survival for many cancers (Francken et al, 2005; Collins et al, 2004; Botteman et al, 2003; Rojas et al, 2000). There are increasing calls by policy makers to discontinue it.
Furthermore, the main focus of follow-up is moving away from detecting recurrence towards managing long-term cancer survivorship issues, such as delayed side effects of treatment and the risk of new primary cancers.
As the number of patients surviving cancer increases, provision of routine hospital follow-up puts a growing burden on outpatient services. The role of the specialist nurse in cancer care has evolved over the last decade, including the creation of clinical nurse specialists and advanced practice nurses, who have a greater therapeutic role and additional clinical experience (Willard and Luker, 2007; Jones, 2005).
Nurse-led follow-up and other alternative models, such as telephone and patient-initiated follow-up, are increasingly being used to reduce the workload of outpatient clinics.
Our recently published systematic review, funded by Cancer Research UK, compared the effectiveness and cost-effectiveness of nurse-led follow-up of patients with cancer with conventional doctor-led follow-up (Lewis et al, 2009a). It also examined patients’ and healthcare professionals’ views of cancer follow-up, irrespective of provider or setting (Lewis et al, 2009b).
The review was conducted in line with guidelines reported in the NHS Centre for Reviews and Dissemination (2001) Report 4. We carried out comprehensive literature searches, which included: 19 electronic databases (from inception until February 2007); various online trial registries and conference proceedings; and bibliographies of included studies.
We included comparative studies and economic evaluations of nurse-led versus doctor-led follow-up, as well as qualitative studies that examined patients’ and healthcare professionals’ views of cancer follow-up. However, studies comparing different types of nurse-led follow-up were not included. The review considered all cancer sites. The quality of included studies was assessed using a predefined checklist.
Seven comparative studies of nurse-led follow-up were identified in the review, but three were only reported as abstracts, and the lack of information on the methodology and results precluded their inclusion in the analyses.
The remaining four studies were all randomised controlled trials (RCTs). Two, which were of moderate quality, examined patient-initiated follow-up for breast cancer (Koinberg et al, 2004; Brown et al, 2002). Two examined telephone-based follow-up: one was a well conducted study of lung cancer (Moore et al, 2002) and one was a poorly conducted study for prostate cancer (Helgesen et al, 2000). The findings of individual studies were generally poorly reported.
Survival, recurrence and psychological morbidity
There were no statistically significant differences between the intervention groups in any of the included studies for survival, recurrence rates and psychological morbidity. Nurses, using telephone-based follow-up for lung cancer, recorded symptoms sooner than doctors, but this did not translate into a difference in progression-free survival.
Health-related quality of life
Two studies examined health-related quality of life (HRQL). In the study of telephone-based follow-up for lung cancer, patients in the nurse-led follow-up group had less dyspnoea at three months and better emotional functioning and less neuropathy at 12 months than those in the doctor-led follow-up group.
However, the prognoses of included patients were extremely poor and only 55/203 (27%) were included in the analysis at 12 months. The small sample size and the large number of HRQL items (14) that were considered on an individual basis at three different follow-up periods (three, six and 12 months) means the findings could have occurred by chance.
In a study of breast cancer follow-up no statistically significant difference was found between groups for HRQL.
Two studies (one poor and one well conducted) showed a statistically significant difference between groups for patient satisfaction, while the remaining two showed no significant difference between groups.
Patients with lung cancer were more satisfied with nurse-led telephone follow-up than routine hospital follow-up, and more patients with nurse-led follow-up were able to die at home rather than in hospital or in a hospice. Patients with breast cancer thought that patient-initiated nurse-led follow-up was convenient, but valued the reassurance provided by routine hospital follow-up.
Resource use and costs
There were a few differences between the groups for resource use; in one study mammography use was higher in the patient-initiated group, and in a second study of telephone follow-up (lung cancer) the use of radiographs and radiology was higher in the nurse group, but the number of consultations was lower, compared with conventional follow-up.
There was a tendency for the cost of nurse-led follow-up - when taking into account staff costs and not just tests and procedures - to be less than that of conventional follow-up (one study), but no statistical analyses were carried out.
Other related studies
The final update searches for the systematic review were conducted in February 2007, and two relevant studies have since been published.
One was an equivalence trial comparing conventional doctor-led follow-up with telephone follow-up by specialist nurses after treatment for breast cancer; all patients continued to receive routine mammography (Beaver et al, 2009).
The structured telephone intervention (30 minute consultation) was aimed primarily at meeting patients’ information needs, and the main outcome of interest was anxiety (hospital appointments lasted 10 minutes). This was a well conducted trial which included 374 patients, with low to moderate risk of recurrence, who were followed up for a mean of 24 months.
The mean state-trait anxiety inventory scores for patients who received telephone follow-up were found to be statistically equivalent to those of patients who received routine hospital contact and clinical examinations, although there was not much improvement in mean scores for either group during the trial.
Those in the telephone group reported significantly greater satisfaction with the information they received and higher levels of helpfulness in the way their concerns were dealt with than those in the conventional follow-up group. There was no difference between the groups for patients’ information needs, which reduced over time in both groups.
There was also no statistically significant difference between the groups for the number of investigations ordered or time to detection of recurrence (equivalence was only tested for anxiety).
The second study was an RCT comparing conventional doctor-led follow-up with nurse-led follow-up using home visits for patients who had recently undergone surgical treatment for oesophageal cancer(Verschuur et al, 2009). The main outcome was health-related quality of life. This study was also well conducted and included 109 patients who were randomised three weeks after hospital discharge and followed up for 13 months. Although quality of life improved during follow-up for all patients, there was no statistically significant difference between the groups. There was also no significant difference for patient satisfaction, despite specialist nurses spending more time with patients (median length of visit was 43 minutes for nurse-led follow-up and 11 minutes for doctor-led follow-up).
Implications for practice
Although none of the studies directly compared follow-up by nurses in outpatient clinics with doctor-led clinics, they did evaluate alternatives to routine hospital follow-up, such as patient-initiated and telephone follow-up, which could be a means of reducing workload for outpatient clinics.
However, only three studies included a comparison of resource use and two of costs (neither evaluated cost-effectiveness properly).
In terms of effectiveness, the overall findings showed that nurse-led follow-up may be feasible, as none of the studies showed any statistically significant adverse effects of nurse-led follow-up in terms of survival, time to detection of recurrence, psychological morbidity or quality of life.
However, non-statistically significant findings do not necessarily translate to equivalence, and could be due to an inadequate sample size, especially for outcomes that are unlikely to occur frequently during the study such as death or recurrence.
Patients who received nurse-led telephone follow-up for lung cancer had better outcomes for some quality-of-life items (less dyspnoea at three months and better emotional functioning and less peripheral neuropathy at 12 months) compared with doctor-led follow-up. However, the care provided in this study was more akin to palliative care than follow-up.
Qualitative studies have shown that patients find routine follow-up reassuring, especially in alleviating fears of recurrence, and that they value the psychosocial support it provides (Lewis et al, 2009b). Although they highly valued the expertise of hospital specialists and the quick access to tests that routine hospital follow-up provides, they thought time, emotional support and continuity of care were sometimes lacking. Patients also report having unmet information needs, which they believe would help them cope and be more involved in their care.
Nurse-led follow-up could potentially result in better continuity of care and the availability of more time to provide psychosocial support and address patients’ information needs. Compared with conventional hospital follow-up, patients who received nurse-led telephone follow-up reported greater overall satisfaction (lung cancer), greater satisfaction with the information they received (breast cancer) and higher levels of helpfulness in the way their concerns were dealt with (breast cancer), although most studies found no statistically significant difference between groups for patient satisfaction.
Careful consideration is needed when transferring the findings of included studies to other settings, such as different cancer sites, the use of alternative protocols or nurses’ remit. Nurse-led follow-up is a complex intervention made up of many interrelated components, and both the profession and the process (in terms of the focus of follow-up and how it is delivered) are continually evolving.
Most of the studies followed protocols designed to meet a number of different perceived needs, such as coordinating care with other professions and providing specific information and support for patients.
In one study (telephone follow-up, prostate cancer), the nurse and the patient decided on the follow-up plan together at an initial introductory appointment (Helgesen et al, 2000). In another (patient-initiated follow-up, breast cancer) an initial appointment was used to give advice on self-care and provide time to talk about patients’ psychological situation (Koinberg et al, 2004).
In a third study, the aim of nurse-led telephone follow-up for lung cancer was to provide information and support for patients and coordinate input from other agencies and services (Moore et al, 2002).
Most of the studies included specialist nurses, who worked as part of a team, and were not responsible for diagnosis and prescribing. Changing some of these elements of nurse-led follow-up could result in different findings.
Cancer follow-up by specialist nurses appears to be feasible but new initiatives should incorporate an evaluation of patient outcomes. Patients appeared to be satisfied with nurse-led follow-up, and patient-initiated or telephone follow-up could provide practical alternatives to conventional care.
Forgoing routine hospital visits and clinical examinations may not lead to increased patient anxiety, as those who received telephone follow-up experienced the same level of anxiety as those who attended a regular clinic.
However, more well conducted research is needed before equivalence to doctor-led follow-up can be assured in terms of survival, recurrence, patient wellbeing and cost-effectiveness.
- This article is based on research originally published in the Journal of Advanced Nursing (Lewis et al, 2009a) and the British Journal of General Practice (Lewis et al, 2009b).
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