Assessing the Patient Experience in Cancer Care

This study is currently recruiting participants. (see Contacts and Locations)
Verified June 2014 by Mayo Clinic
University of Southern California
Johns Hopkins University
Information provided by (Responsible Party):
Jon C. Tilburt, Mayo Clinic Identifier:
First received: June 14, 2012
Last updated: June 5, 2014
Last verified: June 2014

Communication is an important component of comprehensive cancer care impacting patient satisfaction, adherence, and quality of life. The wide array of issues addressed in cancer clinical interactions makes communicating about a broad range of topics (including quality of life, communication, symptom control, complementary/alternative therapies, costs, treatment burden, prognosis, anxiety, side-effects, sexual function, palliative care options, etc.) especially interesting and potentially challenging. Some of these topics may not be routinely addressed in the clinical interaction or may require consultative support from other members of the comprehensive cancer care team. One frequently overlooked critical element in research on communication between cancer clinicians, their patients, and their primary care clinicians is describing real-time consultations between patients and their clinicians. These interactions provide rich material for assessing key psycho-social dynamics and identifying issues that patients find important in their care. In order to devise systems of care that optimize the patient experience, it is critical that clinicians and researchers understand, appreciate, and systematically characterize the richness and complexity of the decision-making process in routine cancer consultations between cancer patients and their treating clinicians. This study seeks to assess the patient experience in cancer care by observing patients and their physicians in their clinical interactions and following them for several months to see how their care went. By describing in-depth the conversations and experiences of patients in these clinical interactions, this study will lay the foundation for practice-based interventions to optimize patients' interactions with their cancer care teams.

Brain Neoplasm
Breast Neoplasm
Endocrine Gland Neoplasm
Gastrointestinal Neoplasm
Genitourinary Neoplasm
Gynecological Neoplasm
Head and Neck Neoplasm
Lung Neoplasm

Study Type: Observational
Official Title: Assessing the Patient Experience in Cancer Care: An Observational Communication Study

Resource links provided by NLM:

Further study details as provided by Mayo Clinic:

Primary Outcome Measures:
  • Frequency/duration/content of routine cancer consultations surrounding key topics in the clinical dialogue. [ Time Frame: Time of enrollment through completion of 3 month follow-up survey ] [ Designated as safety issue: No ]
    Key topics to be studied include: quality of life, complementary and alternative therapies, psycho-social characteristics, patient-clinician dynamics, health literacy

Estimated Enrollment: 700
Study Start Date: May 2012
Estimated Study Completion Date: May 2015
Estimated Primary Completion Date: May 2015 (Final data collection date for primary outcome measure)

Ages Eligible for Study:   18 Years and older
Genders Eligible for Study:   Both
Accepts Healthy Volunteers:   No
Sampling Method:   Non-Probability Sample
Study Population

Cancer patients age 18 or over receiving care from clinicians who have also consented to participate in this study at Mayo Clinic Rochester, University of Southern California-Norris, or LA County Hospital.


Inclusion Criteria:

  • Age greater than or equal to 18 years
  • Histological confirmation of: brain, breast, endocrine, gastrointestinal, genitourinary, gynecological, head/neck, lung, melanoma, or sarcoma malignancies.
  • Speak English or Spanish
  • Not enrolled in hospice
  • In any of the following phases of the cancer control continuum: initial diagnosis, initial treatment, early survivorship, or recurrence.
  • Provide written informed consent

Exclusion Criteria:

  Contacts and Locations
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies.

Please refer to this study by its identifier: NCT01621295

Contact: Cara Fernandez 507-266-1897

United States, California
Los Angeles County Hospital Recruiting
Los Angeles, California, United States, 90033
Contact: Augustin Garcia, MD    323-865-3967      
University of Southern California - Norris Recruiting
Los Angeles, California, United States, 90033
Contact: Heinz-Joseph Lenz, MD    323-865-3967      
United States, Minnesota
Mayo Clinic Recruiting
Rochester, Minnesota, United States, 55905
Contact: Cara Fernandez    507-266-1897      
Principal Investigator: Jon C Tilburt, MD         
Sponsors and Collaborators
Mayo Clinic
University of Southern California
Johns Hopkins University
Principal Investigator: Jon C Tilburt, MD, MPH Mayo Clinic
  More Information

No publications provided

Responsible Party: Jon C. Tilburt, PI, Mayo Clinic Identifier: NCT01621295     History of Changes
Other Study ID Numbers: 11-006682, R01AT006515
Study First Received: June 14, 2012
Last Updated: June 5, 2014
Health Authority: United States: Institutional Review Board

Additional relevant MeSH terms:
Digestive System Neoplasms
Endocrine Gland Neoplasms
Gastrointestinal Neoplasms
Head and Neck Neoplasms
Urogenital Neoplasms
Digestive System Diseases
Endocrine System Diseases
Gastrointestinal Diseases
Neoplasms by Site processed this record on March 31, 2015