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 https://www.cms.gov/CAHPS/01_Overview.asp#TopOfPage and www.va.gov/QUALITYOFCARE/index.asp.) 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 https://cahps.ahrq.gov/surveys-guidance/hospital/instructions/hospinstructions.html, https://cahps.ahrq.gov/surveys-guidance/nh/index.html, https://cahps.ahrq.gov/surveys-guidance/ich/index.html.)
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:
- 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;
- Severe
delay in receiving care in the ED as well as disrespectful behavior on the part
of ED providers;
- Providers
who do not consider information provided by the patient, leading to under- or
overmedication for pain; and
- 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 manuscript
.
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 sankeller@air.org.
[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