A scenario similar to Case 4, but the post-operative USS
demonstrated several contralateral thyroid nodules, measuring 2cm
maximally, classified as U2/3 and confirmed Thy2 on FNAC.
Patient
Responses
The first patient questionnaire explored their experiences and
perspectives during their treatment pathway. Responses were received
from 74 patients nationwide. The responses are represented in Table 2.1.
Question 1: Were the ‘pros and cons’ of the different
treatment options explained to you in full and the reasoning behind
them?
Question 2: Was the final decision on
treatment/management a ‘shared-decision-making’ process between you and
the doctor or was it mainly the doctor’s recommendation?
Question 3: Is
there any information that you would have liked to have known before
that you weren’t told about? Especially regarding the different
treatment options?
The second patient survey explored patient preferences for treatment
choice in LRDTC. A total of 135 different patients responded, with their
responses seen in Table 2.2.
Question 1: What was their preferred choice between total
thyroidectomy vs hemi-thyroidectomy if diagnosed with LRDTC?
Questions 2, 3 and 4 asked - What was the main reason(s)
behind the preferred surgical choice (hemi- or total-thyroidectomy)?
Discussion
The aim of this study was to
investigate how UK surgeons and MDTs interpret the latest BTA and ATA
guidelines on the surgical management of low-risk thyroid cancers
(LRDTC) and how this impacts patient experiences across the UK.
This study canvassed opinion from 74 thyroid surgeons (the majority
being core members of regional thyroid cancer MDTs) and their region of
practice covered most of the UK, thereby allowing an accurate reflection
on current national practice. The BTA guideline was the most popular,
which is to be expected as this survey was performed in the UK. When
asked what specific risk factors were taken into consideration
when assessing recurrence risk,
interestingly, the cut off for patient’s age (> 45 years)
was considered by only about half the surgeons/MDTs.
This perhaps reflects the
increasing evidence that a specific age cut-off is less important
(reflected in 8th TNM change to >55
years) than age being considered a continuously variable risk
factor15. It also seems that central neck node
involvement is considered in the UK to be an important risk factor
(85%), with about 50% specifying that they would consider it a
significant risk only if more than five nodes were involved.
This variability appears to affect
the management of patients as shown by the variability in the responses
to the five case scenarios of typical LRDTCs.
For scenario one, despite both BTA and ATA guidelines supporting
treatment de-escalation, only 58% offered a hemi-thyroidectomy (HT),
whilst 33% preferred the traditional approach of a total thyroidectomy
(TT). Scenario two presented a similar case but with a larger T2 (3cm)
PTC and interestingly, this resulted in 54% favouring, with only 24%
favouring HT.
Scenario three demonstrated that the presence of incidentally excised
microscopically positive lymph nodes, regardless of number, affected
management strategy. Over 90% of respondents recommended TT (+/- RAI).
The BTA and ATA guidelines differ here and may explain the observed
responses. The ATA suggest that incidental sampling and less than five
involved lymph nodes still constitute a ‘low-risk’ case, whereas BTA
have no such qualification and thus indirectly advocate TT and RAI. UK
MDTs clearly feel any central lymph node involvement, is a significant
risk factor, warranting more extensive surgery, despite the ATA
guidance, as well as the lack of clear evidence that CND or TT have any
additional benefit to survival outcomes in such cases. Based on this
preference, it is clear the results of the current IoN
trial16 (which include N1a patients) will affect
management in patients with positivity in incidentally sampled lymph
nodes and may further change attitudes towards role of prophylactic CND.
Scenarios four and five presented a patient with a T1a(m) multifocal
mPTC, where 63% favoured HT. The ATA and BTA guidelines again differ
for multifocal mPTC. The ATA guidelines stratify such patients as
‘low-risk’ suitable for HT, whereas BTA guidelines promote TT. This
reflects the current conflicting evidence in the prognostic impact of
multifocal and bilateral disease. Studies have shown better disease-free
survival after TT whilst others have suggested HT may be equally
effective17–19. Despite BTA guidelines promoting TT
for multi-focal mPTC, as it is a predictor for contralateral/bilateral
disease (up to 50% of cases) only 32% recommended TT, with the
remainder recommending clinical surveillance. However, in the presence
of contralateral benign thyroid nodules,
responses changed towards TT
(66%), presumably due to the concern of potential contralateral
disease. This is despite current evidence demonstrating that multifocal
disease is not an independent prognostic factor for long-term outcomes
and those managed with HT alone demonstrate rates of regional recurrence
and overall survival to be comparable to unifocal
disease20,21. The BTA and ATA guidelines differ here
and consider multifocality as warranting TT, which may partly explain
this preference. This again highlights the concern for inconsistency in
practice nationally as a direct result of the lack of high-quality
clinical data and the current surgical equipoise introduced by the both
guidelines.
A diagnosis of cancer causes a considerable amount of stress to
patients. Even more so with LRDTCs; a situation of clinical equipoise
and multiple treatment options, all with their associated risks.“When the evidence for or against a treatment is inconclusive and
no randomised or prospective national studies are ongoing to address
this issue…” the BTA & ATA recommend a personalised approach
to decision-making via a ‘shared-decision-making’ model. Our survey
demonstrated that 40% of patients felt the ‘pros and cons’ of different
management options were not fully explained to them. We also found that
47% of patients felt that they did not have a significant voice in
their management plan and that the final treatment plan was primarily
the surgeon’s choice (53%). Nickel et al.2,22reported that patients and the general public demonstrated a low
pre-existing general awareness of the concept of overdiagnosis and
overtreatment of LRDTCs, and a major point of conflict/confusion for
patients was that LRDTCs were being described to them as a “good
result”, despite the association of the word
“cancer”2. Therefore, it is paramount that clear and
comprehensive information is provided to patients who are having to make
difficult decisions. Our survey reported that thorough explanation of
different treatment options and their respective side-effects, the more
satisfactory the decision-making process.
These issues may have to be
addressed by providing patients with clinical decision
aids23,24 and by future qualitative research.
The second patient survey explored patients’ preferred treatment choice
if they were theoretically diagnosed with LRDTC and what factors would
be important for their decision. Contrary to the clinical shift towards
treatment de-escalation, 60% pf patients preferred TT; the overwhelming
reasons (80%) being “to ensure there was no cancer
left ”, “to prevent recurrence ” and “to avoid the
anxiety and worry of having another cancer in the other side ”. Only
20% preferred HT, with their main reason (46%) being “to avoid
lifelong thyroid replacement medication ”. These findings are
consistent with a qualitative study by Nickel et al. exploring patient
attitudes to thyroid cancer treatment2. They suggested
that the observed treatment preferences may be due to the implications
that the word “cancer” has in society, and observed, like other
groups, that the majority of patients perceived thyroid cancer to be
similar to other types of cancer in terms of morbidity and
mortality22.
Study Limitations
The main limitation was the relatively small number of
respondents. However, the authors
do not feel that a larger number of responses was necessary for this
study, as this was a snapshot of clinical decision-making and patient
experiences in relation to LRDTCs. For the two patient surveys, there
may be selection bias, as the patients were approached through a patient
support group website which may bias the type of respondent and their
experience of
treatment.
For questionnaire three, even if a patient who answered the
questionnaire was not “low-risk”, their answers remain valid as the
aim of the questionnaire was to investigate what patients would want if
they were diagnosed with LRDTC. It was not possible to identify the
geographical location of the respondents to investigate any regional
variation in experiences, which may have been useful for future quality
improvement.
Conclusions
This study has demonstrated
significant variation in the interpretation of the ATA 2015 & BTA 2014
guidelines in risk assessment and surgical management of “low-risk”
thyroid cancer by different thyroid MDTs/surgeons throughout the UK.
There is clear clinical equipoise in the management of LRDTC due to
conflicting evidence and the lack of high-quality prospective randomised
controlled trial data. It is likely that differences between
international and national guidelines (as a result of equipoise in
evidence) and differences in interpretation across the UK are
contributing to the observed practice variation.
We have also observed that current guidelines seem to be at odds to what
patients may prefer (TT over HT). In addition, the variation in surgical
practice throughout the country may adversely affect patient
experiences. Our findings provide further evidence that improved
delivery of pertinent information to patients within a
‘shared-decision-making’ process is paramount to achieve thorough
informed consent and optimal management for each patient. It also
highlights the need for better evidence from randomised prospective
studies to clarify the current guidelines, particularly in the use of
hemi-thyroidectomy, for both the clinicians and patients.
Tables