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Assessing the Patient Experience in Cancer Care

The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Read our disclaimer for details. Identifier: NCT01621295
Recruitment Status : Completed
First Posted : June 18, 2012
Last Update Posted : January 20, 2016
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

Brief Summary:
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.

Condition or disease
Brain Neoplasm Breast Neoplasm Endocrine Gland Neoplasm Gastrointestinal Neoplasm Genitourinary Neoplasm Gynecological Neoplasm Head and Neck Neoplasm Lung Neoplasm Melanoma Sarcoma

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Study Type : Observational
Actual Enrollment : 408 participants
Official Title: Assessing the Patient Experience in Cancer Care: An Observational Communication Study
Study Start Date : May 2012
Actual Primary Completion Date : September 2015
Actual Study Completion Date : September 2015

Resource links provided by the National Library of Medicine

Primary Outcome Measures :
  1. 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

Information from the National Library of Medicine

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, Learn About Clinical Studies.

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Ages Eligible for Study:   18 Years and older   (Adult, Older Adult)
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:

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its identifier (NCT number): NCT01621295

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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)
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Principal Investigator: Jon C Tilburt, MD, MPH Mayo Clinic
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Responsible Party: Jon C. Tilburt, PI, Mayo Clinic Identifier: NCT01621295    
Other Study ID Numbers: 11-006682
R01AT006515 ( U.S. NIH Grant/Contract )
First Posted: June 18, 2012    Key Record Dates
Last Update Posted: January 20, 2016
Last Verified: January 2016
Additional relevant MeSH terms:
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Breast Neoplasms
Lung Neoplasms
Head and Neck Neoplasms
Brain Neoplasms
Gastrointestinal Neoplasms
Digestive System Neoplasms
Endocrine Gland Neoplasms
Urogenital Neoplasms
Neoplasms by Site
Breast Diseases
Skin Diseases
Respiratory Tract Neoplasms
Thoracic Neoplasms
Lung Diseases
Respiratory Tract Diseases
Central Nervous System Neoplasms
Nervous System Neoplasms
Brain Diseases
Central Nervous System Diseases
Nervous System Diseases
Digestive System Diseases
Gastrointestinal Diseases
Endocrine System Diseases