Community Cancer Centers Pilot Patient Survey
Condition: Malignant Neoplasms; Cancer
MeSH terms: Neoplasms
Study type: Observational

Summary: 
      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)
    

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.
    

Observational model: Other
Time perspective: Cross-Sectional
Keywords: Navigation; Coordination; Cancer Care; Patient Experience; Cancer; Patient Survey