Assessment of Patients' Experience of Cancer Care (APECC) Study
The Health and Medicine Division (formerly IOM) recommends the development and use of patient-centered measures to assess the quality of cancer care from the patient's perspective. These measures would complement indicators of clinical and technical quality.
Such patient-centered evaluations have been typically conducted through patient surveys. However, as highlighted by the report of NCI's Cancer Outcomes Measurement Working Group, comprehensive, psychometrically sound, cancer-specific measures of patients' experience of, and satisfaction with the care they receive are lacking.
To move the science forward in the area of cancer patients' experience of care assessment and to stimulate future methodological work, the Outcomes Research Branch conducted the Assessment of Patients' Experience of Cancer Care (APECC) study, funded as part of the SEER Rapid Response Surveillance Study contract mechanism. The main objective of the study was to develop and pilot test a survey instrument that would comprehensively assess cancer survivors' experiences of and satisfaction with the follow-up cancer care they received in the previous 12 months.
This population-based SEER study was conducted in collaboration with researchers at the Northern California Cancer Center. The Greater Bay Area Cancer Registry provided the sampling frame. Data were collected between April 2003 and November 2004 through a cross-sectional survey mailed to a representative sample of leukemia, colorectal, and bladder cancer survivors who were diagnosed 2-5 years before the study (diagnosis dates ranged from June 1, 1999 to May 31st, 2001).
Of the 1,572 survivors eligible to participate in the study, 772 (49.2%) returned the survey. A majority of the respondents were colorectal cancer survivors (63.8%), almost a fourth were bladder cancer survivors (24.0%), and the remaining were leukemia survivors (12.1%).
Measures of patients' experience of care were either adapted from existing patient surveys that have been successfully validated in the general population (but not in cancer) such as the Consumer Assessment of Healthcare Providers and Systems (CAHPS) family of survey instruments or were newly created by the APECC research team. All survey items went through one round of cognitive testing to ensure that they were clearly understood and reliably interpreted by potential respondents.
To get an in-depth understanding of how cancer patients and survivors participate in the decision-making process related to their initial treatment as well as their follow-up care, we also conducted detailed focus groups with a small sub-sample of the APECC study participants.
The APECC survey addressed the following content areas:
- Follow-up Cancer Care Experiences
- Access to care, physicians' communication behavior, symptoms management, health promotion, communication with health care team, coordination of care, trust in the physician, overall rating of quality of care and patient satisfaction
- Cancer-related Information Seeking
- Information needs, information sources, information seeking experiences and barriers, and information seeking self-efficacy
- Cognitive Health Appraisal
- Perceived uncertainty, personal control, and perceived health competence
- Participation in Medical Decision-Making
- Patient attitudes and beliefs, patient role preferences, patients' actual role in decisions, and patients' participation self-efficacy
- Health-related Quality of Life
- Physical and mental health
- Complementary and Alternative Medicine
- Recent use of different therapies and discussion of CAM use with physician
- Sociodemographic and Clinical Information
The APECC study has ended.
Publications are available. Additional publications are in development and are forthcoming. A number of presentations have been made using APECC data at national and international conferences.
APECC Survey Instrument and Code Books
Last Updated: 10 May 2016