Establishing a nurse-led thyroid cancer follow-up clinic

Follow up

Current national guidelines state that thyroid cancer has a long natural history where late recurrences occur, but can be treated successfully with a view to cure or long-term survival (BTA, 2014). This has placed an increasing burden on consultant teams, who need to follow up patients for life, as is currently recommended following treatment. Long-term, multidisciplinary consultant-led follow-up is recommended practice as thyroid cancer is known to recur many years after treatment in 5-23% of patients (Mitchell et al, 2016).

Murchie et al (2016) investigated cancer survivors' preferences to inform new models of follow-up care and found that patients from a number of different cancer sub-sites appeared willing to accept follow-up by a specialist nurse, trainee specialist doctor or GP provided that they were compensated by other changes in their follow-up, notably greater continuity of care. This mirrors the views of health professionals who are increasingly recognising the benefits of nurse-led cancer follow up (Wells et al, 2015).

Macmillan Cancer Support's Recovery Package and NHS Improvement highlight the potential benefits of risk-stratifying follow up of cancer patients (Macmillan Cancer Support, 2015; NHS Improvement, 2016). National policy in the UK from both the Government and Macmillan Cancer Support articulates the need for change from the traditional one-size-fits-all consultant-led follow-up model, to models that are patient-centred and holistic (Department of Health et al, 2010). An ambitious strategy was launched by the Independent Cancer Taskforce (2015), which aimed to transform cancer care between 2015 and 2020, including alternative models of follow up following cancer treatment. Individual care plans may range from discharge and self-care, to monitoring by a specialist nurse or allied health professional, or continued consultant follow up and monitoring. The BTA also supports alternative models of follow up such as nurse-led clinics (BTA, 2014).

Consensus exists among the medical profession for follow-up of thyroid cancer patients to detect recurrence and second primaries (Simo et al, 2016). However, as the population ages and more patients are surviving cancer, traditional models of consultant-led follow up are unsustainable. Although it is assumed that consultant-led follow up is the safest way to detect recurrence and second primaries, there is evidence that nurses can safely follow up cancer patients (Moore et al, 2002; Strand et al, 2011; Saltbaek et al, 2019). Additionally, nurse-led follow-up has been found to have a positive effect on a patient's quality of life (de Leeuw et al, 2013) and patient satisfaction remains high over time (Berglund et al, 2015). A systematic literature review (Lewis et al, 2009) found that continuity of care and unhurried consultations are of major importance to patients—something that the thyroid nurse-led clinic is able to provide.

The clinic at the Royal Preston Hospital was established in 2013 as a result of a challenge by a consultant ENT surgeon, who felt that the clinical nurse specialist (CNS) team could significantly improve the experience of thyroid cancer patients by providing a nurse-led clinic for low-risk patients. A consultant-led clinic runs alongside the nurse-led clinic. Therefore, if the CNS requires a consultant review of a patient with thyroid cancer a second clinic attendance is not required on a separate day. The clinic was established a full year ahead of national guidelines by the BTA. The clinic is focused on minimising the risk of recurrent disease using medical management of thyroid-stimulating hormone (TSH) suppression. The production of thyroxine from the thyroid gland has vital roles in digestion, heart and muscle function. It is regulated by a constant ‘feedback’ loop. The hypothalamus secretes thyrotropin-releasing hormone (TSR), which in turn stimulates the pituitary gland to produce TSH. When the levels of thyroxine increase the production of TSR and TSH is reduced, thereby regulating the level of thyroid hormones in the body (Tortora and Derrickson, 2017). It is this mechanism that is used to manage the risk of disease recurrence: by managing the dose of levothyroxine (the pharmacological form of thyroxine) the TSH is suppressed so that it does not stimulate growth of any thyroid cells (which could potentially be cancerous).

As patients are followed up for life, there is the opportunity for strong therapeutic relationships to develop between CNS and patient. For example, in addition to managing the risk of cancer recurrence in this way, the CNS has the opportunity to explore quality of life issues directly impacted by physiological levels of thyroxine. The potential effect on health status (including fatigue) and mood in patients taking TSH-suppressive doses of levothyroxine is well recognised (Samuels et al, 2014). Additionally, the CNS appointments are longer than those of their medical counterparts, which gives time for discussing strategies for managing fatigue, which is extremely common following treatment. However, there are few evidence-based management strategies in post-treatment fatigue management (To et al, 2015).

Historically, thyroid cancer patients who were in long-term follow up would never see the same doctor twice (due to the specialist registrar rotation), and so would have to repeat his or her clinical history at every appointment, which was frustrating and by its very nature could not facilitate the development of a therapeutic relationship over time. A sound understanding of thyroid cancer and its management is essential in order to safely manage the risk of disease recurrence.

The BTA has key recommendations for follow-up (BTA, 2014) which use the common skill set of a head and neck CNS (Webber, 2008); however, the recommendation includes clinical examination of the neck. UK national multidisciplinary guidelines for the management of thyroid cancer also state that clinical examination of the neck must be performed as part of routine follow up (Mitchell et al, 2016). Clinical palpation and assessment of neck lumps is not a skill commonly adopted by head and neck CNSs. However, at the first author's Trust a Rapid Access Neck Lump Clinic was established in 2003 which is, in part, CNS led. Appropriate clinical examination skills were taught to the CNS team and, following rigorous assessment by a senior consultant, the assessment of necks skill set was signed off as competent. This created an ideal opportunity for nurse-led follow up of thyroid cancer patients that provided the traditional medical skill set necessary to conform to national guidelines but also the holistic assessment and support embedded within the CNS role.

A pro-forma was developed by the team to ensure that all the key clinical information is collected and reviewed at every appointment. Ultrasound request rights were secured for the three CNSs running the clinic.

Guidelines on frequency of follow-up were developed and agreed at the local Thyroid Network Site Specific Group (NSSG), which are more stringent than the BTA guidelines (6 monthly for 2 years rather than 1 year, then annually thereafter).

Before attending the clinic a patient has a surveillance ultrasound scan and routine blood tests including thyroid function tests and thyroglobulin (non-stimulated). The test results, recent clinical history and clinical assessment are then analysed and a plan agreed with the patient. The plan aims to minimise the risk of cancer recurrence by suppressing the TSH between 03 and 2.0 mIU/L (milli-international units per litre) using levothyroxine as stated in the BTA guidelines. In addition, support for patients to manage the long-term side effects of treatment is discussed with the patient.

However, by introducing a pro-forma-based assessment tool, the opportunity for practising different standards of care from one health professional to another reduces significantly. The clinic's patient experience survey showed patients value the therapeutic relationship, which begins at diagnosis and then continues throughout treatment and follow up.

The follow-up clinic has diagnosed only one episode of recurrence during its existence. This suggests that the model of risk stratification and follow up is fit for purpose (see case study in Box 1). However, as risk of recurrence is lifelong and the clinic has only been in existence for 6 years, further cases of recurrence are not unexpected.

Case study

James (not his real name) was referred to the nurse-led thyroid clinic by a retiring oncologist. James had been in 2-yearly follow up for a number of years. The CNS introduced himself to James in clinic and begin to establish a therapeutic relationship. James was referred for blood tests and a surveillance ultrasound scan of the neck and thyroid bed. Interestingly, he had not had any ultrasound scans conducted for 7 years.

A review of investigations from the previous five clinic appointments had shown the thyroglobulin had been detectable but stable (Tg 3 ng/ml) (nanograms per ml) but there was no clear plan regarding a thyroid-stimulating hormone target range. Following thyroid cancer, thyroglobulin should be undetectable—it is a dimeric protein produced by the follicular cells of the thyroid and used entirely within the thyroid gland. If thyroglobulin is detectable it raises suspicion that further disease may be present with local recurrence of the cancer or distant metastases. A rising thyroglobulin increases the suspicion that further disease may be present.

When James was reviewed in clinic with bloods and ultrasound scan, the blood test revealed a rising thyroglobulin (Tg 5ng/ml). Following discussion with the consultant, a CT chest scan was requested. Interestingly the consultant and the CNS had recently returned from a conference at which a paper was presented that said there is little or no value in undertaking additional radiological investigations (other than an ultrasound scan) as recurrence was never detected when thyroglobulin is below 10 ng/mL. However, we were relieved that we chose to ignore the advice as the chest CT revealed multiple chest metastases.

James's case was discussed at the thyroid MDT meeting. He was offered radioiodine. James responded well to the treatment and is currently disease free and under close regular surveillance.

Survey design

A simple seven-question anonymous patient satisfaction questionnaire was developed by the authors using Survey Monkey. The questionnaire collected both quantitative and qualitative data to allow the patients the opportunity to give feedback in free text. Ethical approval was not required as this was an audit of the service.

Patient population

The study population included all patients attending the clinic and predominantly females under the age of 50 years, which reflected the age and sex distribution of patients at diagnosis.

Data collection

Over a 6-week period during spring 2019, all patients attending the clinic were offered the opportunity to complete the feedback questionnaire. All 36 patients agreed to take part. Following patients' consultations in clinic, questionnaires were anonymously completed electronically on Survey Monkey, using an electronic tablet in a separate room without any staff present to avoid the perception of pressurising patients to respond positively. Privacy was given to the patient while completing and submitting the survey; 36 complete responses were obtained.

Results

The questions were as follows:

Q1. How satisfied were you with the nurse specialist assessment today? (Figure 4)

Q2. Did the CNS answer all your questions to your satisfaction? (Figure 5)

Q3. Do you prefer to see the nurse specialist face to face or would you prefer a telephone consultation? (Figure 6)

Q4. How long did you wait to be seen by the CNS? (Figure 7) Q5. How satisfied were you with the length of the consultation today? (Figure 4)

Q6. and Q7. Would you like a support group and would you attend? (Figure 8).

Discussion

The patient experience survey demonstrated that patients were extremely satisfied with the care from the CNSs. Some regions undertake telephone follow-up clinics for low-risk cancer patients. Interestingly, 100% of patients who completed the survey would prefer face-to-face follow up when given the choice of telephone or face to face. Given that parking difficulties for patients attending outpatient clinics at the hospital are significant, to have 100% of respondents preferring face-to-face follow-up when given the choice is remarkable and reflects the value of face-to-face therapeutic relationships. Free-text comments included:

The survey was undertaken before the COVID-19 pandemic, and since then the service has been delivered via telephone or video using the NHS ‘Attend Anywhere’ service. Although not formally audited, anecdotal feedback given voluntarily from patients during telephone and video consultations suggests they would like to return to face-to-face appointments in the future. The reasons for this need to be explored to understand patient preference. A mixed approach, by either telephone, video or face to face, informed by individual patient preference, may be the way forward after the pandemic.

When patients were asked how the clinic could be improved, some of the following responses were given:

The above comments are representative of those given in the survey. However, there were two comments reminding us that waiting times can occasionally be too long: 80% of patients are seen within 10 minutes of arrival and 95% within 15 minutes. When we considered why this may be, the longer waiting times occurred when there was a newly diagnosed cancer patient in the consultant clinic, which runs alongside the thyroid clinic, and the CNS interrupted the thyroid clinic to meet and support this patient.

Unfortunately, local thyroid cancer support groups do not exist: the survey was used to assess appetite for establishment of a support group.

Further results included:

Limitations

The survey was administered at a single hospital, and the number of completed surveys was limited, therefore the survey findings are not generalisible. Qualitative data obtained in patients' free-text responses were limited, and it is possible that interviews with patients, rather than a questionnaire tool, may have encouraged responses in greater depth. Free text comments are often seen as too subjective and unfocused to provide a basis for action (Welch, 2010).

The survey was available only on an electronic tablet, and patients who are not confident using the technology might have declined to participate, although none did. The provision of a postal survey may encourage such patients to participate.

Conclusion

The nurse-led thyroid cancer follow-up clinic is extremely successful for patients and CNSs alike. Improving patient care and innovative ways of working were the drivers for the establishment of the clinic in 2013; however, the clinic was established before the Independent Cancer Taskforce (2015) and meets the ambition for more patient-centred models of follow up. Nurse-led cancer follow-up clinics are well established, but a concern exists about how future demand can be met when the demand for follow up exceeds the current supply of CNSs. The management of thyroid cancer recurrence is complex and although some patients may be able to self manage (as recommended in Macmillan Cancer Support's ‘Recovery Package’), no current thyroid guidelines advocate this practice. Some nurses, especially CNSs, are seen as an expensive resource by some, yet, in this setting, they are a more cost-effective alternative to consultant care, freeing the consultant to see new cancer patients or more complex cancer patients. The clinic is a good example of how the role of the CNS has developed to meet some of the demands of cancer care in the 21^st century.

There is a trend towards telephone consultations in the NHS, which has the potential benefits of convenience for the patient including the lack of need to travel to the consultation, parking at the hospital (a particular issue at the author's hospital), and no difference in the levels of patient satisfaction between face-to-face and telephone consultations. (Hewitt et al, 2010). However, this may disadvantage patients with a hearing impairment.

KEY POINTS

CPD reflective questions