Limited empirical studies have assessed ICT's impact on QoL in iron overload patients.
However, our results from patient and
clinician interviews suggested that the impact of
ICT on iron overload patients is profound. Indeed, our research also indicated that QoL impact may inhibit prescription of and adherence
to infusion ICT. One study suggested that adherence to ICT is likely to be low given that there is no immediate threat, symptom or impact
associated with iron overload (i.e. all effects are long term), a very high impact of infusion ICT on QoL and apparent low satisfaction
with infusion ICT [31]. Another study also showed significant
iron overload in those who were home transfused indicating poor compliance, though the link with QoL was not established in that study
[32].
These findings are significant and provide insight into the impact of iron overload and ICT
on patient's daily lives from both the patients' and clinicians' perspectives. The implications of the results suggest that patients are
less likely to adhere or continue their treatment regimens as recommended by their doctors. The consequences of non-adherence are
significant and may result in severe morbidity (such as cardiac disease, diabetes, failure of sexual development, osteoporosis, liver
damage) and early mortality [7].
Further research is warranted to continue the qualitative and quantitative study of QoL using
validated instruments in patients with thalassemia, SCD, and MDS receiving ICT, in order to further our understanding of the issues and so
improve patients QoL.
It is important to acknowledge that this literature review and its findings are based on
published English literature studies which emerged from searching the electronic databases Medline and Embase. Studies were qualitatively
discussed, and there was insufficient data to synthesize the evidence. Further research could use statistical methods to explore the net
effect of infusion ICT with DFO.
Given that minimal literature was available, we relied on patient and clinician interviews.
Some of the patient interviews were historical and the primary purpose of those interviews was not to assess the QoL of the patients, but
rather to assess their perceptions of current treatments for iron overload. As a result, in the first instance, we were required to assess
the impact on QoL based on the answers to questions that were not specific to QoL. Thus, we may have missed important aspects of life that
are impacted by ICT.
In addition, the clinicians interviewed had experience primarily with iron overload in
thalassemia and SCD, rather than MDS. As a result, we may have over or under-represented the impact of infusion ICT on MDS patients. We
recommend further qualitative and empirical studies to assess the impact of infusion ICT and oral ICT in iron overload patients, using
validated QoL instruments to better ascertain the direct impact.
The impact of infusion ICT on all patients is high, but it appears that the impact may be
greatest for adolescents and young adults (and therefore in thalassemia and SCD), when being able to socialise with peers. How they are
perceived by those peers is of paramount importance. The unsightly bumps and bruises caused by infusion ICT appear to most greatly impact
adolescents and young adults, with some reporting that they cannot wear certain clothes or are too embarrassed to go out. In young adults
and older adults, the impact on work and sex life may also be quite profound. Given that MDS patients tend to be elderly, the most likely
impact for active MDS patients would be on evening social life.
When asked about their experiences with infusion ICT, patients stated that the impact of such
therapy included pain at the injection site (3/9 [33%]), although one patient reported that the problem was not the pain from the
injection site but rather awareness of the pump.
Patients complained of disrupted sleep because of the pump (3/9 [33%]), and that ICT
interfered with night-time activities. Further, many patients stated that their sex lives and relationships were affected by their
treatment (4/9 [44%]), and some stated that the treatment affected their self-esteem (2/9 [22%]), with some stating that they chose
particular clothes to disguise their pumps (2/9 [22%]).
For all patients, satisfaction with DFO was low, primarily owing to local injection-site
reactions, inconvenience, and the constraining nature of the therapy. Further, when presented with a hypothetical oral ICT, patients
unanimously preferred oral ICT to existing treatment.
Nevertheless, even with the aforementioned caveats, our results indicated that the impact of
infusion ICT on QoL is high. There is a need for easier oral iron chelation therapy that is at least as efficacious and well tolerated in
order to improve QoL, increase prescription and adherence rates, and ultimately, reduces morbidity and mortality due to iron overload.
Further research should compare DFO with oral chelation therapy according to such endpoints.
