Preliminary Patient Reported Outcomes after Proton Therapy for Prostate Cancer

Reporter: J. Taylor Whaley, MD
The Abramson Cancer Center of the University of Pennsylvania
Last Modified: May 21, 2012

Presenter: James Metz, Christine Hill-Kayser
Presenter's Institution: Hospital of the University of Penn, Philadelphia, PA


  • Cancer survivorship is on the rise, with an estimated 12 million cancer survivors living in the United States today.
  • Unfortunately, all cancer treatments cause side effects and the subsequent consequences leave survivors potentially wrestling with the long-term effects of treatments.
  • The Institute of Medicine has recommended that all individuals following cancer therapy be provided with a summary of the treatments received and a follow up "care plan". The care plan should include discussion of possible late side effects, recommendations for cancer screening, psychosocial effects, financial issues, recommendations for a healthy lifestyle, genetic counseling, referrals for follow-up care and a list of support resources.
  • In fact, the American College of Surgeons will soon require physicians to provide such a care plan at the completion of oncology therapy; however, physicians' offices are ill-equipped for this new recommendation.
  • The LIVESTRONG Care Plan is such a survivorship care plan and is a free, publically available, Internet-based tool that can be created based on individualized answers provided in a brief voluntary questionnaire.
  • While prostate cancer is the most common non-skin cancer found in men with approximately 200,000 cases occurring per year in the United States, several very effective treatments lead to frequent cures. With many long-term survivors, prostate cancer patients may be at risk for significant late effects following treatment.
  • Several research studies have demonstrated that incongruence exists between physician-reported and patient-reported outcomes. The difficulty in collecting outcomes based data is the inherent biases that can exist for both methods; however, there is a growing desire for patient-reported outcomes.
  • The purpose of this study was to report the preliminary patient-reported outcomes in an effort to further understand toxicity following proton therapy for prostate cancer.


  • Patient reported data was gathered via the LIVESTRONG Care Plan, the voluntary, publically available, free, Internet-based tool that can be found through the Oncolink website.
  • The patient sample consisted of prostate cancer survivors that voluntarily created personal care plans.
  • Built within the Care Plan questionnaires, the tool allows survivors to enter data regarding diagnosis, demographics, and treatments.
  • Additionally, the website queries patients regarding potential late effects associated with particular treatments using validated questionnaires. Furthermore, patients are then asked to score urinary and sexual symptoms using CTC adapted scales.


  • 246 prostate cancer survivors utilized this care plan tool between May 2009 and January 2012.
  • Median age at diagnosis was 58 years old. Median age at data collection was 60 years old.
  • 84% of all patients were U.S. Residents.
  • 53% had undergone radiation therapy; 16% had undergone proton therapy
  • All patients receiving proton therapy were treated within the United States with 80% treated at University-based Cancer Centers. Median age for proton therapy was 59 years old.
  • In contrast, 20% of non-proton radiation patients were treated outside of the U.S., and only 40% were treated at a University-based Cancer Center.
  • Patient reported side effects can be found in the table below:

Non-proton Radiation

Proton Therapy

Erectile dysfunction



Urinary incontinence



Chronic diarrhea



Radiation Colitis



Authors' conclusions

  • This tool represents a feasible method for collecting patient-reported treatment toxicity outcomes after cancer treatment.
  • Preliminary data demonstrate a trend toward decreased rectal toxicity after proton therapy compared to non-proton radiation therapy.
  • Further data of this kind will be critical as the number of patients treated with proton therapy rises.

Clinical/Scientific Implications

  • The authors present new patient-reported outcomes data extracted from LIVESTRONG care plan on patients with prostate cancers following treatment with proton therapy. The presentation is certainly a valuable contribution to the literature.
  • These data are preliminary though there appear to be a strong trend toward decreased rectal toxicity with proton therapy for prostate cancer.
  • The importance of patient-reported outcomes data is receiving increasing attention. With inherent biases found in physician-reported outcomes, this method of data gathering certainly offers a very important tool for future research studies.
  • However, due to the limited information regarding treatment details, including radiation dose and techniques, this information must be evaluated carefully. Future studies would benefit if simultaneously gathered physician reported outcomes could be contrasted to patient-reported data.
  • Certainly, additional studies and clinical experience are needed to continue research with this very provocative tool.