Community Cancer Centers Pilot Patient Survey

This study has been completed.
Sponsor:
Information provided by:
National Institutes of Health Clinical Center (CC)
ClinicalTrials.gov Identifier:
NCT00786656
First received: November 5, 2008
Last updated: July 1, 2014
Last verified: June 2014
  Purpose

Background:

  • Studies suggest that cancer patients diagnosed and treated in a facility with multi-specialty care and clinical research may live longer and have a better quality of life than patients treated elsewhere.
  • The NCI Community Cancer Centers Pilot Program (NCCCP) is a 3-year program to test the concept of a national network of community cancer centers to expand cancer research and deliver the most advanced cancer care to Americans in their own communities.
  • The pilot program includes a survey of cancer patients receiving care at the pilot sites.

Objectives:

  • To gain an understanding of the experiences of adult patients who receive services at the NCCCP pilot sites and assess if and how their experience changes over the study period. Data about the following are collected:
  • Patients information needs and awareness of the NCCCP program
  • Clinical trials experience
  • Access to health care
  • Perspectives on patient-provider communication
  • Experiences with patient navigation, self-management, medical decision-making and survivorship
  • Satisfaction with care and quality of life

Eligibility:

  • Patients 21 years or older at the time of diagnosis
  • Treatment at the cancer center for at least 3 months since July 1, 2007

Design:

  • Participants complete a 25-minute questionnaire covering the care they received at their cancer center, their experience with making medical appointments and how long they waited to see the doctor. The survey includes information on the following:
  • Services at the cancer center
  • Getting needed care
  • Assistance for patients and their families
  • Communication with the cancer care team
  • Clinical trials
  • Care after finishing treatment
  • Evaluation of care
  • Health and medical history
  • Background information (demographics)

Condition
Malignant Neoplasms
Cancer

Study Type: Observational
Study Design: Time Perspective: Cross-Sectional
Official Title: NCI Community Cancer Center Pilot Program Patient Survey

Resource links provided by NLM:


Further study details as provided by National Institutes of Health Clinical Center (CC):

Primary Outcome Measures:
  • Evaluation of NCCCP Pilot Program

Secondary Outcome Measures:
  • Gain an understanding of the patients' perspective on the NCCCP Pilot Program and to assess how well health care and informational needs are being met.

Estimated Enrollment: 6000
Study Start Date: November 2008
Detailed Description:

BACKGROUND:

The NCI Community Cancer Centers Pilot Program (NCCCP), http://ncccp.cancer.gov, is a three-year pilot program to test the concept of a national network of community cancer centers to expand cancer research and deliver the latest, most advanced cancer care to a greater number of Americans in the communities in which they live.The pilot program is designed to encourage the collaboration of private-practice medical, surgical, and radiation oncologists, with close links to NCI research and to the network of 63 NCI-designated cancer Centers principally based at large research universities. NCI contracted with RTI International (ww.rti.org) to conduct a comprehensive evaluation of the NCCCP pilot program using multiple methodologies, including a survey of cancer patients receiving care at the pilot sites.

OBJECTIVES:

The goal of the patient survey is to gain an understanding of the clinical experiences of adult patients who receive services at the NCCCP pilot sites and to assess if and how their experience change over the pilot period. Specifically, the survey instrument seeks to collect data about patients information needs and awareness of the NCCCP program; clinical trials experience; access to health care; perspectives on patient-provider communication; and experiences with patient navigation, self-management, medical decision making, and survivorship; as well as their satisfaction with care and quality of life.

ELIGIBILITY:

Each of the ten participating Centers will create a de-identified electronic file of all patients who meet the inclusion criteria:

  1. living patients who are listed on a NCCCP site s cancer registry;
  2. cancer patients age 21 years and older at the time of sampling; and
  3. cancer patients who had 1or more cancer treatment outpatient visits at their Cancer Center since July 1, 2007 for the 1st round of data collection, and since July 1, 2009 for the second data collection. Center will create this file using their cancer registry and assign each individual a unique identification (ID) number.

DESIGN:

Each file containing the universe of eligible patients will be sent to RTI, from which 475 patients from each Center s list will be randomly selected. RTI will send a list back to each Center indicating which 475 patient IDs were selected for inclusion in the survey. The Center staff will match selected patient back to their master list using the Study ID number to identify patients included in the survey. RTI will deliver 475 pre-paid patient survey packets to each Center. The packets will include all required items except a Patient Notification Letter, which is a cover letter introducing the study and provides instructions on how to complete the survey. To protect patient privacy, Center staff will be responsible for generating the mailing labels and personalized Patient Notification Letter, and mailing the packets.

  Eligibility

Ages Eligible for Study:   21 Years and older
Genders Eligible for Study:   Both
Accepts Healthy Volunteers:   Yes
Criteria
  • INCLUSION CRITERIA:
  • Living patients who are listed on an NCCCP site s cancer registry
  • Cancer patients age 21 years and older at the time of sampling
  • Cancer patients who had 1 or more cancer treatment outpatient visits at their cancer center since July 1, 2007 for the first survey round and since July 1, 2009 for the second round of the survey.

EXCLUSION CRITERIA:

  • Persons under the age of 21 at the time of sampling.
  • Persons not in the cancer registry
  • Cancer patients without at least 1 or more cancer treatment outpatient visits since July 1, 2007 for the first survey round and since July 1, 2009 for the second round of the survey.
  • Cancer patients who are deceased at the time of sampling
  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 ClinicalTrials.gov identifier: NCT00786656

Locations
United States, North Carolina
Research Triangle Institute International
Research Triangle Park, North Carolina, United States, 27709
Sponsors and Collaborators
Investigators
Principal Investigator: Irene P Prabhu Das, Ph.D. National Cancer Institute (NCI)
  More Information

No publications provided

ClinicalTrials.gov Identifier: NCT00786656     History of Changes
Other Study ID Numbers: 999909026, 09-C-N026
Study First Received: November 5, 2008
Last Updated: July 1, 2014
Health Authority: United States: Federal Government

Keywords provided by National Institutes of Health Clinical Center (CC):
Navigation
Coordination
Cancer Care
Patient Experience
Cancer
Patient Survey

Additional relevant MeSH terms:
Neoplasms

ClinicalTrials.gov processed this record on September 16, 2014