The outcomes that matter most

The committee designated 4 outcomes as critical. These were cognitive function, treatment for recurrence, overall survival and the numbers of patients with symptomatic versus asymptomatic presentation. As the committee was unsure whether identifying early progression of a tumour would be clinically beneficial, they identified these outcomes as the easiest to interpret, so that the benefit or harm of treatment would be most obvious on review.

Health-related quality of life was also important, although not critical as the committee agreed the link between recurrence and health-related quality of life was not as direct.

The quality of the evidence

The clinical evidence search identified no studies that met the inclusion criteria for this review.

The committee decided that since the question was so important and the evidence so limited that they would make weak recommendations to provide guidance for clinicians based on their clinical knowledge.

The committee determined that a research recommendation was important to standardise practice in this area. They determined that the major outstanding clinical question was how valuable early detection of recurrence was compared to later detection. This was true for all 3 questions on follow-up the committee looked at (for glioma, meningioma and brain metastases) but the committee elected to prioritise glioma as treatment options for recurrence as the evidence for management options of recurrent glioma was higher quality, so it was more likely that findings would influence clinical practice. Therefore the committee did not make a research recommendation on the follow-up of meningioma. See Evidence Report A for details on the recommendation they made on the follow-up of glioma.

Benefits and harms

On the basis of experience and judgement, the committee recommended clinical review of a person with meningioma as this might be useful to detect recurrence, based on changes in the person’s symptoms and function. Clinical assessment can also lead to intervention or onward referral, if indicated. This may improve a person’s quality of life by alleviating symptoms or helping the person develop adaptive strategies. Although the committee identified no evidence that early detection of changes in clinical status could improve outcomes, they agreed that failing to detect a change had happened at all could have severely negative consequences for the person with a tumour. Consequently they made a strong recommendation for offering a review that could detect recurrence or other changes in clinical condition, but weaker recommendations on what should be in that review.

The committee identified no evidence on which to make recommendations about when to arrange regular clinical review. From reviews on the management of the tumour, however, the committee believed it had indirect evidence of factors that would make a recurrence more dangerous. Consequently they made a weak recommendation to consider the factors that could alter the urgency of the review. The recommendation on taking into account the person’s preferences was made on the basis of the committee’s experience.

While there was no evidence for or against the use of MRI or other scans to detect recurrence, the committee recommended that MRI scanning could be useful to detect recurrence on the basis that it is standard practice to do this already and that unstandardised MRI is not as useful as standard structural MRI. The committee explained how under certain circumstances not all of the sequence would be necessary, for example if the tumour had very well-defined characteristics which could be adequately monitored with only some of the suggested sequence. Consequently they made a weaker recommendation than for the equivalent sequence in the investigation of the tumour, because in the investigation of the tumour it is not yet known what characteristics the tumour will have and therefore clinicians cannot determine if there are any aspects of the sequence which can be left out whereas in the follow up there is more scope for the use of clinical judgement in determining which steps were necessary.

Based on their experience, the committee recommended that clinicians be aware that routine imaging (and waiting for the result) may cause anxiety. The committee made this recommendation because in their experience the potential harms of scanning very frequently were sometimes not appreciated by all clinicians.

The committee recommended clinical review in response to new or changing neurological symptoms (outside the usual schedule of scans). This is based on the fact that the purpose of routine follow-up is to identify changes to the tumour in order to treat these before they become symptomatic (if this is possible). New or changing symptoms likely mean that the tumour has grown between scans, and therefore waiting until the next routine scan could limit treatment options. In addition, the review would represent an opportunity for the clinician to discuss how the change might affect the risk of negative effects (such as infection and swelling). The committee discussed how they had not reviewed the evidence for how long a clinical review could be delayed in the case of new or changing symptoms and therefore could not specifically recommend a timeframe for review, but discussed how similar clinical considerations would apply in the case of a changing symptom as a new cancer referral and that therefore the timing might be related to that in practice.

The committee suggested a schedule of scans for a person with meningioma as a possible guide to discuss with the person with the tumour. Although there was no evidence the committee felt that consensus recommendations would be valuable to help standardise practice and reduce inequity from clinical variation, and suggested a follow-up schedule that could be used as a guide. Detail on the link between the committee’s judgement and the recommendations is given below.