gms | German Medical Science

48th Meeting of the Particle Therapy Co-Operative Group

Particle Therapy Co-Operative Group (PTCOG)

28.09. - 03.10.2009, Heidelberg

Development of Internet-based Survivorship Care Plans for Cancer Survivors Treated with Proton Therapy

Meeting Abstract

  • Chr. Hill-Kayser - Radiation Oncology, University of Pennsylvania, Philadelphia, USA
  • C. Vachani - Radiation Oncology, University of Pennsylvania, Philadelphia, USA
  • M. Hampshire - Radiation Oncology, University of Pennsylvania, Philadelphia, USA
  • L. Jacobs - Radiation Oncology, University of Pennsylvania, Philadelphia, USA
  • J. Metz - Radiation Oncology, University of Pennsylvania, Philadelphia, USA

PTCOG 48. Meeting of the Particle Therapy Co-Operative Group. Heidelberg, 28.09.-03.10.2009. Düsseldorf: German Medical Science GMS Publishing House; 2009. Doc09ptcog090

doi: 10.3205/09ptcog090, urn:nbn:de:0183-09ptcog0904

Veröffentlicht: 24. September 2009

© 2009 Hill-Kayser et al.
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Background: The Institute of Medicine has recommended that all cancer survivors, regardless of type of therapy, be provided with a survivorship care plan. As proton radiotherapy centers become more widespread, the subset of survivors having been treated with protons, in particular those with cancers of the brain (CNS), head & neck (HN), and prostate, continues to expand. This study analyzes the use of Internet based survivorship care plans by the populations most commonly treated with proton therapy.

Methods: In May, 2007, we launched the first Internet-based tool for creation of survivorship care plans. The care plan tool is available at, and also via OncoLink, a cancer information website serving over 3.9 million pages/ month to 385,000 unique IP addresses and based at the University of Pennsylvania. After responding to queries regarding demographics and treatment, users receive comprehensive individualized guidelines regarding recommendations for follow-up care. Data regarding survivors of prostate, brain, and head & neck cancer treated with radiotherapy are presented to guide the creation of proton therapy specific survivorship care plans. Data has been collected with IRB approval since 2007.

Results: Since the care plan tool was made available in May 2007, 5956 care plans have been created. Most users (88%) have reported residing in the US, but the remainder are from >30 different countries. Of the total users, 10% (n=532) have reported diagnoses of prostate, CNS, or HN cancer. Of the 94 CNS cancer survivors, the majority (75/94, 80%) report having received radiotherapy. The majority of HN cancer survivors, (125/133, 93%) also report having received radiotherapy, as have the majority of prostate cancer survivors (166/198, 84%). Users have reported very high levels of satisfaction using the available tool, with 97% reporting their experience to be "good", "very good" or "excellent", 95% reporting "good" to "excellent" levels of satisfaction with information provided, and 97% reporting guidelines provided to be helpful. Although 50% of users report that the amount of information provided through the care plan is "just right", 30% report desiring more detailed information. Only 8% of patients with CNS, HN, or prostate cancers report having received survivorship information previously.

Conclusions: The continued growth of proton therapy worldwide represents a unique opportunity for initiation of survivorship care for patients treated with protons. Patients with CNS, HN, and prostate cancers appear willing to use this Internet tool for creation of survivorship care plans, and highly satisfied with the results provided. The vast majority have never received survivorship information before. Future versions will include individualization of care plans with regard to type of radiotherapy received, and data-driven additions to information provided.