Background: Collecting, monitoring, and responding to patient-generated health data (PGHD) are associated with improved quality of life and patient satisfaction, and possibly with improved patient survival in oncology. However, the current state of adoption, types of PGHD collected, and degree of integration into electronic health records (EHRs) is unknown. Methods: The NCCN EHR Oncology Advisory Group formed a Patient-Reported Outcomes (PRO) Workgroup to perform an assessment and provide recommendations for cancer centers, researchers, and EHR vendors to advance the collection and use of PGHD in oncology. The issues were evaluated via a survey of NCCN Member Institutions. Questions were designed to assess the current state of PGHD collection, including how, what, and where PGHD are collected. Additionally, detailed questions about governance and data integration into EHRs were asked. Results: Of 28 Member Institutions surveyed, 23 responded. The collection and use of PGHD is widespread among NCCN Members Institutions (96%). Most centers (90%) embed at least some PGHD into the EHR, although challenges remain, as evidenced by 88% of respondents reporting the use of instruments not integrated. Forty-seven percent of respondents are leveraging PGHD for process automation and adherence to best evidence. Content type and integration touchpoints vary among the members, as well as governance maturity. Conclusions: The reported variability regarding PGHD suggests that it may not yet have reached its full potential for oncology care delivery. As the adoption of PGHD in oncology continues to expand, opportunities exist to enhance their utility. Among the recommendations for cancer centers is establishment of a governance process that includes patients. Researchers should consider determining which PGHD instruments confer the highest value. It is recommended that EHR vendors collaborate with cancer centers to develop solutions for the collection, interpretation, visualization, and use of PGHD.
Peter D. Stetson, Nadine J. McCleary, Travis Osterman, Kavitha Ramchandran, Amye Tevaarwerk, Tracy Wong, Jessica M. Sugalski, Wallace Akerley, Annette Mercurio, Finly J. Zachariah, Jonathan Yamzon, Robert C. Stillman, Peter E. Gabriel, Tricia Heinrichs, Kathleen Kerrigan, Shiven B. Patel, Scott M. Gilbert, and Everett Weiss
Timothy Gilligan, Daniel W. Lin, Rahul Aggarwal, David Chism, Nicholas Cost, Ithaar H. Derweesh, Hamid Emamekhoo, Darren R. Feldman, Daniel M. Geynisman, Steven L. Hancock, Chad LaGrange, Ellis G. Levine, Thomas Longo, Will Lowrance, Bradley McGregor, Paul Monk, Joel Picus, Phillip Pierorazio, Soroush Rais-Bahrami, Philip Saylor, Kanishka Sircar, David C. Smith, Katherine Tzou, Daniel Vaena, David Vaughn, Kosj Yamoah, Jonathan Yamzon, Alyse Johnson-Chilla, Jennifer Keller, and Lenora A. Pluchino
Testicular cancer is relatively uncommon and accounts for <1% of all male tumors. However, it is the most common solid tumor in men between the ages of 20 and 34 years, and the global incidence has been steadily rising over the past several decades. Several risk factors for testicular cancer have been identified, including personal or family history of testicular cancer and cryptorchidism. Testicular germ cell tumors (GCTs) comprise 95% of malignant tumors arising in the testes and are categorized into 2 main histologic subtypes: seminoma and nonseminoma. Although nonseminoma is the more clinically aggressive tumor subtype, 5-year survival rates exceed 70% with current treatment options, even in patients with advanced or metastatic disease. Radical inguinal orchiectomy is the primary treatment for most patients with testicular GCTs. Postorchiectomy management is dictated by stage, histology, and risk classification; treatment options for nonseminoma include surveillance, systemic therapy, and nerve-sparing retroperitoneal lymph node dissection. Although rarely occurring, prognosis for patients with brain metastases remains poor, with >50% of patients dying within 1 year of diagnosis. This selection from the NCCN Guidelines for Testicular Cancer focuses on recommendations for the management of adult patients with nonseminomatous GCTs.