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Quality of Care (QOC) Measure

ASCQ-Me includes a fixed-format questionnaire, called the ASCQ-Me Quality of Care (QOC) measure, to understand the health care experience of adults with SCD.  This measure is not integrated into the ASCQ-Me domain framework for health because patient reports of the quality of their care are theoretically distinct from PRO or HRQOL measures in that they are descriptions of care processes, not outcomes.  Donabedian’s often-cited model to support health-services research includes three categories of variables: structure, process, and outcome.[1] Process measures include patient interactions with providers and what was done to the patient and when. Outcome measures include indicators of patient health following the delivery of health care. Patient reports can provide data for both health care process and outcome measures. The Consumer Assessments of Healthcare Providers and Systems (CAHPS) family of surveys is an example of measures based on patient reports of health care delivery process. PROMIS is an example of measures based on patient reports of their health

The format of the ASCQ-Me QOC measure was modeled after the Consumer Assessments of Healthcare Providers and Systems (CAHPS) surveys.[i],[ii] CAHPS are used by the Centers of Medicare and Medicaid Services (CMS), as well as Department of Defense[iii] and Department of Veterans Affairs, to evaluate the care provided to beneficiaries. (See and Thus, CAHPS represents the most widely used method for capturing and reporting patients’ experiences of their care, covering literally millions of lives. This system of measures has standardized the evidence on quality of care, enabling comparisons to be made among different providers and payers. CAHPS measures exist to assess the performace of Medicare, Medicaid, and private health plans, clinicians and medical groups, hospitals, surgeons and surgical care, nursing homes, and dialysis facilities. (See,,

We used the CAHPS model to take material generated from the focus groups and one-on-one interviews with people who have SCD (described earlier in this report) to craft a draft health care experience survey to evaluate the care given to patients who have sickle cell disease (SCD). Themes that emerged from the qualitative research were: 

  1. Lack of knowledge of SCD on the part of providers in primary care and the emergency department (ED), leading to stigmatization of adults with SCD as drug seeking or leading to inappropriate and ineffective care;
  2. Severe delay in receiving care in the ED as well as disrespectful behavior on the part of ED providers;
  3. Providers who do not consider information provided by the patient, leading to under- or overmedication for pain; and
  4. As a consequence of the preceding, adults prefer to treat the symptoms of SCD outside of the traditional health care system. 

We have documented the development of this survey including evidence for the reliability and validity of the data in a peer-reviewed manuscriptPDF icon.

To find out more about the ASCQ-Me QOC measure including a beta copy of the measure, preliminary scoring manual, and future research and development, please contact Dr. San Keller at 1-919-918-2309 or

[1] Donabedian, A. (1988). The quality of care: How can it be assessed? JAMA, 121(11), 1145–1150. doi:10.1001/jama.1988.03410120089033. PMID 3045356

[i] Crofton C, Lubalin J, Darby C. Forward. Med Care 1999;37(3):MS1-MS9

[ii] Goldstein E, Farquhar M, Crofton C, Darby C, Garfinkel S. Measuring hospital care from the patients’ perspective: An overview of the CAHPS hospital survey development process. Health Serv Res 2005;40(6):1977-1995

[iii] Keller, S.D., G.C. Martin, C.T. Evensen, R.H. Mitton (2009). The Development and Testing of a Survey Instrument for Benchmarking Dental Plan Performance Using Insured Patients’ Experiences as a Gauge of Dental Care Quality, J Am Dent Assoc, Vol 140 No 2, 229-237