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Development and implementation of an Internet-based survivorship care program for cancer survivors treated with hematopoietic stem cell transplantation

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Abstract

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 survivors who were 3–18 years after HSCT for hematologic malignancy and 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 1,775 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 years), with 56% male. Fifty-seven percent 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.

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Acknowledgments

We are grateful to the survivors who gave their time and energy to participate in this study. We thank Drs. Stephanie Lee and Paul Martin for their medical expertise and review of the INSPIRE site. We thank those who gave extensively of their time to make this project successful: Chin Boo for programming of the assessments, linking with the Internet site, and continuous monitoring and problem-solving of the Internet site; Prathima Parvathaneni for programming, maintenance, and support of the patient portal; Suna Gurol for Internet site design and development; Ric Johnston for programming and site development oversight and problem-solving; Kerry McMillen, RD CD, for her nutrition content contributions; Lisa Donahue for Internet site design; Linda Owen for Internet writing; Sandy Lee for development of the Internet site administration; and Nigel Bush for expertise in Internet interventions. We also thank Eun-Ju Lee for her administration of the project and Katie Ahlgren for her assistance with the manuscript. We offer a special thank you to the survivors of HSCT who made this study possible. Funding for this research was provided by grant CA112631 from the National Cancer Institute.

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Authors and Affiliations

  1. Clinical Research Division, Fred Hutchinson Cancer Research Center, 1100 Fairview Ave N, D5-220, P.O. Box 19024, Seattle, WA, 98109, USA

    Karen L. Syrjala, Allison C. Stover, Jean C. Yi, Samantha B. Artherholt, Eleni M. Romano, Gary Schoch & Mary E. D. Flowers

  2. Department of Psychiatry and Behavioral Sciences, University of Washington School of Medicine, Seattle, WA, USA

    Karen L. Syrjala & Samantha B. Artherholt

  3. Blood and Marrow Transplant Information Network (BMT InfoNet), Highland Park, IL, USA

    Susan Stewart

  4. Department of Medicine, University of Washington School of Medicine, Seattle, WA, USA

    Mary E. D. Flowers

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  1. Karen L. Syrjala
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  2. Allison C. Stover
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  3. Jean C. Yi
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  4. Samantha B. Artherholt
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  6. Gary Schoch
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  7. Susan Stewart
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  8. Mary E. D. Flowers
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Correspondence to Karen L. Syrjala.

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Syrjala, K.L., Stover, A.C., Yi, J.C. et al. Development and implementation of an Internet-based survivorship care program for cancer survivors treated with hematopoietic stem cell transplantation. J Cancer Surviv 5, 292–304 (2011). https://doi.org/10.1007/s11764-011-0182-x

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