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.
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.
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.
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.