Part 2. GOSH / RHSC ear reconstruction study: what are the main findings on children’s feelings about their new ears?

42 children whose ears were reconstructed by Neil Bulstrode at Great Ormond Street took part in this study – 37% of those who were asked to complete questionnaires. 27 children who undertook reconstruction with Ken Stewart at the Royal Hospital for Sick Children also replied – 56% of those contacted.

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35 out of 42 GOSH patients who took part in the research said that they were ‘satisfied with [their] new ear,’ and 7 out of 42 were not satisfied. Among RHSC patients, 23 out of 27 said they were ‘satisfied,’ and 4 out of 27 were not.

34 out of 42 GOSH children in the study said that their ‘new ear is similar to other ear,’ and 8 out of 42 that it is not similar. This compares to 19 out of 27 RHSC children who said their ear was ‘similar,’ vs 8 out of 27 who did not.

Among the GOSH patients, more were ‘satisfied with [the] shape’ of their new ear (40 out of 42) than were ‘satisfied with [the] size’ (34 out of 42). In contrast, more RHSC patients were ‘satisfied with [the] size’ (23 out of 27) than ‘satisfied with [the] shape’ (12 out of 27).

The questionnaires also asked about behaviours associated with children’s new ear. 4 of the 42 GOSH patients responding said they hide their new ‘ear with [a] hat,’ and 5 of the 27 RHSC patients.

6 of the 42 GOSH patients said they are ‘anxious about seeing [the] hairdresser,’ along with 5 of the 27 RHSC patients. Just 2 of the 42 GOSH children said they hide their new ear ‘in photos,’ compared to 7 of the 27 RHSC patients.

39 of the 42 GOSH children said they ‘would have [their] ear made from rib again,’ while 4 of the GOSH children said they ‘Would prefer to do nothing about [their] ear.’ This compares to 22 of the 27 RHSC patients who said they ‘would have [their] ear made from rib again,’ and 2 of the RHSC patients who said they ‘would prefer to do nothing about [their] ear.’

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It’s important to remember that only 37% of the GOSH patients who were asked to complete questionnaires replied, and 56% of the RHSC children. Those who didn’t respond may have given different answers, so these numbers can’t tell us about their outcomes.

However, what findings do show is that there is variety in experience and feelings about reconstructed ears, and that results are not always the same for different individuals.

Comparisons between GOSH patients and RHSC patients are made to highlight this variation. Again, however, remember that many patients did not reply to the questionnaires, and we can’t know what they would have said. So this study’s findings are not a comprehensive comparative assessment of the quality offered by the two surgeons.

Lastly, it is useful to remember that the study’s timeframes for reconstructions at the two hospitals are very different. The GOSH patients completed their surgeries between 2011 and 2013, while the RHSC patients completed theirs as far back as 2003.

It is possible that this could have some bearing on the different replies from children across the hospitals. For example, the much higher satisfaction rate of GOSH patients with the shape of their new ear may have something to do with the time at which their surgery took place. It would be interesting to know about the feelings of GOSH patients whose surgery took place before 2011.

There is one final, crucially important, point about this research. It has no comparison group of children who have not had reconstructive surgery. It can’t tell us how happy with their ears these individuals are, overall, in contrast to those who chose reconstruction. And it can’t tell us how study children felt before their surgery. But it helpfully gives us an idea of the current feelings of the small group of children who took part.

The full journal article can be found here: http://www.jprasurg.com/article/S1748-6815(16)30484-3/abstract

Part 1. GOSH / RHSC ear reconstruction study: how did it work, and who took part?

The researchers contacted two sets of children. The first were those who had completed ear reconstruction at Great Ormond Street Hospital, with Neil Bulstrode, between 2011 and 2013. The second were those who completed reconstruction with Ken Stewart at the Royal Hospital for Sick Children, between 2003 and 2013.

115 GOSH patients, who had their operations between eight months and three years before this study, were sent questionnaires. GOSH patients were sent two different surveys, and only the results from the second are discussed in this blog.

This is because the second is better designed than the first, and because the second questionnaire was also sent to RHSC children, which allows comparisons. 42 of the 115 GOSH patients contacted returned the second questionnaire (37%). The average age of these children at completion of surgery was 11.

A higher proportion of RHSC children completed their surveys: 56%. However, a smaller number of patients were contacted – 48, with 27 returning the questionnaire. The average age of these children at completion of surgery was 14.

So all the findings that will be discussed in this blog are for 27 individual RHSC patients, who had surgery across an 11 year period. For GOSH patients, they are for 42 individuals who had surgery over a three year period.

The fact that only 37% of GOSH patients and 56% of RHSC patients contacted took part in this study means that we have to be very careful in understanding its results. The children who did not reply may have given very different answers to those who did.

We can’t assume that this research applies to all individuals who have had surgery with Neil Bulstrode or Ken Stewart. As discussed in the original article, it is possible, for example, that some children may not take part because of concerns about how their replies may affect their ongoing care.

It is also possible that those who have had more negative experiences are more likely to reply – or, alternatively, those who are happier with the results of their surgery are happier to respond.

Despite these limitations, what this study can very usefully tell us is how those people who took part in it feel about their ears after surgery.

This may help with considering the pros and cons of reconstructive options (including doing nothing), and raise questions to ask surgeons. The surveys also included questions on factors such as post-operative care and pain relief – and answers on these points may also help planning and decisions.

The full journal article can be found here: http://www.jprasurg.com/article/S1748-6815(16)30484-3/abstract

New study looks at ear reconstructions at GOSH and RHSC

2017 sees the publication of a new study by Neil Bulstrode, Ken Stewart, and colleagues. It contacts rib graft ear reconstruction patients who had surgery at Great Ormond Street Hospital (Neil Bulstrode’s cases) and the Royal Hospital for Sick Children (Ken Stewart’s cases).

The study asks children how they feel about their new ears, as well as questioning them on other experiences during and after surgery.

There’s a lot in the research that will be useful to any microtians considering reconstruction, so this blog will unpick it across several posts.

  1. The first will describe how the study was carried out, and the children who took part.
  2. The second will highlight some of the main results on children’s feelings about their new ears.
  3. The third will look at other experiences related to the surgery.
  4. The fourth will discuss implications of the research for children considering reconstruction – including possible questions to ask surgeons and / or people who have experienced surgery themselves.

The full journal article can be found here: http://www.jprasurg.com/article/S1748-6815(16)30484-3/abstract : Akter, F., Mennie, J,C., Stewart, K., Bulstrode, N. (2017). Patient reported outcome measures in microtia surgery. Journal of Plastic, Reconstructive & Aesthetic Surgery (70), 416-424.

If you would like to read the original report and can’t access it (you usually need a university account to get through the paywall), the corresponding author should be able to provide you with a personal copy: fa347@cam.ac.uk / farhanaakter@doctors.org.uk