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Assessing the Patient Experience in Cancer Care

This study has been completed.
University of Southern California
Johns Hopkins University
National Center for Complementary and Integrative Health (NCCIH)
Information provided by (Responsible Party):
Jon C. Tilburt, Mayo Clinic Identifier:
First received: June 14, 2012
Last updated: January 18, 2016
Last verified: January 2016
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 ]
    Key topics to be studied include: quality of life, complementary and alternative therapies, psycho-social characteristics, patient-clinician dynamics, health literacy

Enrollment: 408
Study Start Date: May 2012
Study Completion Date: September 2015
Primary Completion Date: September 2015 (Final data collection date for primary outcome measure)

Ages Eligible for Study:   18 Years and older   (Adult, Senior)
Sexes Eligible for Study:   All
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
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Please refer to this study by its identifier: NCT01621295

United States, California
Los Angeles County Hospital
Los Angeles, California, United States, 90033
University of Southern California - Norris
Los Angeles, California, United States, 90033
United States, Minnesota
Mayo Clinic
Rochester, Minnesota, United States, 55905
Sponsors and Collaborators
Mayo Clinic
University of Southern California
Johns Hopkins University
National Center for Complementary and Integrative Health (NCCIH)
Principal Investigator: Jon C Tilburt, MD, MPH Mayo Clinic
  More Information

Responsible Party: Jon C. Tilburt, PI, Mayo Clinic Identifier: NCT01621295     History of Changes
Other Study ID Numbers: 11-006682
R01AT006515 ( US NIH Grant/Contract Award Number )
Study First Received: June 14, 2012
Last Updated: January 18, 2016

Additional relevant MeSH terms:
Breast Neoplasms
Head and Neck Neoplasms
Brain Neoplasms
Gastrointestinal Neoplasms
Digestive System Neoplasms
Lung Neoplasms
Endocrine Gland Neoplasms
Urogenital Neoplasms
Neoplasms by Site
Breast Diseases
Skin Diseases
Central Nervous System Neoplasms
Nervous System Neoplasms
Brain Diseases
Central Nervous System Diseases
Nervous System Diseases
Digestive System Diseases
Gastrointestinal Diseases
Respiratory Tract Neoplasms
Thoracic Neoplasms
Lung Diseases
Respiratory Tract Diseases
Endocrine System Diseases processed this record on April 21, 2017