A B S T R A C T PurposeResearch has documented cognitive deficits both before and after high-dose treatment followed by allogeneic hematopoietic cell transplantation (HCT), with partial recovery by 1 year. This study prospectively examined the trajectory and extent of long-term cognitive dysfunction, with a focus on 1 to 5 years after treatment. Patients and MethodsAllogeneic HCT recipients completed standardized neuropsychological tests including information processing speed (Trail Making A and Digit Symbol Substitution Test), verbal memory (Hopkins Verbal Learning Test-Revised), executive function (Controlled Oral Word Association Test and Trail Making B), and motor dexterity and speed (Grooved Pegboard). Survivors (n ϭ 92) were retested after 80 days and 1 and 5 years after transplantation. Case-matched controls (n ϭ 66) received testing at the 5-year time point. A Global Deficit Score (GDS) summarized overall impairment. Response profiles were analyzed using linear mixed effects models. ResultsSurvivors recovered significant cognitive function from post-transplantation (80 days) to 5 years in all tests (P Ͻ .0001) except verbal recall (P Ͼ .06). Between 1 and 5 years, verbal fluency improved (P ϭ .0002), as did executive function (P Ͻ .01), but motor dexterity did not (P Ͼ .15), remaining below controls (P Ͻ .0001) and more than 0.5 standard deviation below population norms. In GDS, 41.5% of survivors and 19.7% of controls had mild or greater deficits (NcNemar test ϭ 7.04, P ϭ .007). ConclusionAlthough neurocognitive function improved from 1 to 5 years after HCT, deficits remained for more than 40% of survivors. Risk factors, mechanisms and rehabilitation strategies need to be identified for these residual deficits.

Online and telehealth programs such as INSPIRE offer opportunities to enhance HCT survivorship outcomes, particularly for mood, though methods would benefit from strategies to improve efficacy.

Introduction The internet provides a widely accessible modality for meeting survivorship care needs of cancer survivors. In this paper we describe the development and implementation of an internet site designed as a base from which to conduct a randomized controlled trial to meet psycho-educational needs of hematopoietic stem cell transplantation (HSCT) survivors. Methods A cross-disciplinary team designed, wrote content and programmed an internet site for online study registration, consent, assessment, and study implementation. All 3–18 year survivors of HSCT for hematologic malignancy treated at one transplant center were approached by mail for participation. All study activities could be conducted without study staff contact. However, participants had options for phone or email contact with study staff as desired. Results Of 1775 participants approached for the study, 775 (58% of those eligible) consented and completed baseline assessment. Mean age was 51.7 (SD=12.5, age range 18–79), with 56% male. 57% required staff contact one or more times; a majority were for minor technical issues or delays in completion of enrollment or baseline assessment. Discussions/Conclusions This study demonstrated the potential for providing internet-based survivorship care to long-term survivors of HSCT. Although building a survivorship internet site requires a team with diverse expertise, once built, these resources can be implemented rapidly with large numbers of survivors. Implications for Cancer Survivors While internet-based services will not meet all the needs of cancer survivors, this methodology represents an important modality for augmenting onsite clinical services as a method for meeting psycho-educational, information and resource needs of cancer survivors.