Assessing the Patient Experience in Cancer Care

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

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.

Study Overview

• Status: Completed
• Conditions: Melanoma; Sarcoma; Breast Neoplasm; Brain Neoplasm; Endocrine Gland Neoplasm; Head and Neck Neoplasm; Lung Neoplasm; Gastrointestinal Neoplasm; Genitourinary Neoplasm; Gynecological Neoplasm

• Study Type: Observational
• Enrollment (Actual): 408

Contacts and Locations

Study Locations

• United States
  • California
    • Los Angeles, California, United States, 90033
      • Los Angeles County Hospital
    • Los Angeles, California, United States, 90033
      • University of Southern California - Norris
  • Minnesota
    • Rochester, Minnesota, United States, 55905
      • Mayo Clinic

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 18 years and older (ADULT, OLDER_ADULT)
• Accepts Healthy Volunteers: No
• Genders Eligible for Study: All

• 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.

Description

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:

Study Plan

How is the study designed?

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Frequency/duration/content of routine cancer consultations surrounding key topics in the clinical dialogue.	Key topics to be studied include: quality of life, complementary and alternative therapies, psycho-social characteristics, patient-clinician dynamics, health literacy	Time of enrollment through completion of 3 month follow-up survey

Collaborators and Investigators

• Sponsor: Mayo Clinic
• Collaborators: Johns Hopkins University; University of Southern California; National Center for Complementary and Integrative Health (NCCIH)
• Investigators: Principal Investigator: Jon C Tilburt, MD, MPH, Mayo Clinic

Study record dates

Study Major Dates

• Study Start: May 1, 2012
• Primary Completion (ACTUAL): September 1, 2015
• Study Completion (ACTUAL): September 1, 2015

Study Registration Dates

• First Submitted: June 14, 2012
• First Submitted That Met QC Criteria: June 15, 2012
• First Posted (ESTIMATE): June 18, 2012

Study Record Updates

• Last Update Posted (ESTIMATE): January 20, 2016
• Last Update Submitted That Met QC Criteria: January 18, 2016
• Last Verified: January 1, 2016

More Information

Terms related to this study

• Additional Relevant MeSH Terms: Digestive System Diseases; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Skin Diseases; Respiratory Tract Diseases; Lung Diseases; Neoplasms by Site; Endocrine System Diseases; Gastrointestinal Diseases; Breast Diseases; Respiratory Tract Neoplasms; Thoracic Neoplasms; Central Nervous System Neoplasms; Nervous System Neoplasms; Neoplasms; Breast Neoplasms; Head and Neck Neoplasms; Lung Neoplasms; Brain Neoplasms; Gastrointestinal Neoplasms; Digestive System Neoplasms; Urogenital Neoplasms; Endocrine Gland Neoplasms
• Other Study ID Numbers: 11-006682; R01AT006515 (NIH)