A possible limitation of the present study is the fact
that only 52% of the initially invited patients participated.
We cannot exclude the possibility that the most
distressed patients were more likely to participate,which might skew the results. However, this is an explorative
study aiming to investigate illness perceptions
in patients after long-term remission of acromegaly. We
believe that the present results give a good first overview
of how patients perceive acromegaly. Another limitation
might be the fact that the reference samples differ
in age distribution. To date, it is unclear whether illness
perceptions change with age. Although several determinants
theoretically could contribute to our observations
in these patients, a detailed analysis of each of
these factors is not reliable considering the relatively
small group of acromegaly patients. Future studies examining
the differences in illness perceptions between
patients with various (endocrine) disorders in larger
samples should consider correcting for possible confounders
like age.
In summary, in patients with long-term remission of
acromegaly, illness perceptions are affected and correlate
strongly with impaired QoL. Patients reported more negative
illness perceptions than patients with acute illness,
but more positive illness perceptions than patients with
chronic diseases. We propose that a targeted self-management
intervention might help in improving ineffective coping
strategies and affected illness perceptions and thereby
improve QoL, at least in part, in patients with long-term
remission of acromegaly.