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N.S. Majhail et al.
Figure 3. Patient-reported assessment of usefulness of Survivorship Care Plan (SCP) intervention. N=201 respondents on SCP arm who completed 6-month end-of- study assessments.
translation into an electronic format. Hence, further research is still needed to guide its implementation. An ongoing project funded by the National Cancer Institute is investigating its use in combination with an online health informatics platform to facilitate a self-management pro- gram for selected late complications among HCT sur- vivors (clinicaltrials.gov identifier: 03125070; Syrjala, Baker and Majhail).
Of note, we did not observe any impact of the SCP intervention on our primary end point of CSI. Our study population consisted of HCT survivors who had been transplanted relatively recently (1-5 years) and enrolled by centers with an interest in providing survivorship care to their transplant recipients; it is possible our instrument may be more effective in enhancing knowledge and con- fidence about follow-up care among patients who under- went transplantation among patients further out from transplantation or those who are not followed primarily or closely by their transplant centers. The CSI instrument has been validated in cancer survivors but not among HCT recipients, and it is also possible that it did not ade- quately measure the underlying construct in our patient population. The 6-month pre- and post-intervention fol- low-up period was most likely too short to detect any sig- nificant associations with changes in healthcare adherence or utilization. We did not observe any interaction of
GvHD with the intervention or study outcomes. This was most likely due to our study population being relatively further out from transplantation and the short duration of the intervention. Furthermore, it is likely that patients with GvHD were under the active care of transplant cen- ters and this may have impacted patient-reported out- comes assessed in our study (e.g. greater confidence in rec- ommended care, less distress, etc.). These same factors were probably responsible for some patients not finding the SCP tool to be useful for various aspects of survivor- ship care (see Figure 3; “I have not done this” and “Not at all useful” responses on SCP utilization survey adminis- tered as part of end-of-study assessments for the interven- tion arm).
The concordant findings of a reduction in CTXD scores and an improvement in SF-12 MCS scores cross-validate the overall effect of SCP on reducing distress and improv- ing HRQOL in our study population of HCT survivors. It is important to note that these effects occurred over a rel- atively short period of time and did not require any addi- tional clinical contact or intervention to facilitate the use of the SCP. Interestingly, we found an independent associ- ation between older age and lower CTXD scores, which is consistent with other literature where older adults are less distressed about cancer and survivorship.51-54 The SCP pro- vided concise information on previous treatments and
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haematologica | 2019; 104(5)