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reference materials

Lay Summary of “Quality of care in sickle cell disease: Cross-sectional study and development of a measure for adults reporting on ambulatory and emergency department care”

key information

source: Medicine

year: 2016

authors: Evensen CT, Treadwell MJ, Keller S, Levine R, Hassell KL, Werner EM, Smith WR


Rationale: The rationale for this article is that one of the most important ways to measure the quality of healthcare is to ask the individuals who actually receive the care. It is beneficial to have a survey that can be easily understood, tells about what people experience and can be used in different places to allow comparisons. In some cases, standard surveys like the Consumer Assessments of Health Care Providers and Systems (CAHPS) and the Patient Reported Outcomes Measurement Information System (PROMIS) are used. But these surveys have general questions about healthcare and do not focus on sickle cell disease (SCD).

Background: The National Heart Lung and Blood Institute (NHLBI), one of the divisions of the National Institutes of Health (NIH), is a government organization that focuses on SCD research. NHLBI sponsored the creation of the Adult Sickle Cell Quality of Life Measurement (ASCQ-Me, pronounced “Ask me”), a survey for adults living with SCD about their quality of life and health.

In work done prior to this study, areas of concern in adult sickle cell care were identified from consumer working groups, then individual and focus group interviews with 122 adults and 15 providers. This revealed several themes:

1) Lack of SCD knowledge on the part of outpatient and ED providers, patients accused of drug seeking (stigmatized) and receiving ineffective and inappropriate care

2) Extremely long waits before receiving care in the ED

3) Disrespectful providers who did not consider information provided by the patient leading to undermedication or overmedication for pain

4) Preference for adults to treat the symptoms of SCD outside of the healthcare setting

This information was used to make questions that could capture a person’s experience over the last 12 months. Some example questions included: “How successfully was pain treated in the ED?”, “How often did your (regular) doctor or nurse listen carefully to you?”, “When you tried to get an appointment to see a provider, how often were you able to get one as soon as you wanted?” (Answers ranging from Never to Always).

Study Results: This study enrolled 556 people with SCD from 7 different geographical areas around the US who volunteered to answer 27 questions like the ones listed above. Of those volunteers, 90% had a history of severe pain within the last 12 months, 20% within the last week, and 9% had a pain episode at the time they volunteered to take the survey.

Analysis of the answers showed that there were 3 groups of questions (domains) that were important: Provider Communication, ED Care, and Access to routine and emergency care. A total of 13 questions which seemed to be the most reliable were divided up into each of these areas and grouped together (making a “composite”) to give an overall idea about each area. The final survey could be completed in 2–10 minutes.

Most of the individuals who volunteered for this study (80%) saw a sickle cell doctor or nurse and often had 3 or more visits with them in the last 12 months. In general, the quality of care from that sickle cell provider was rated high. This showed the sickle cell-specific survey questions are reliable and can reveal when the quality of care of is generally good.

These same sickle cell individuals also reported a low quality of healthcare overall, particularly in the ED, based on things like how long people had to wait, was the staff courteous and respectful, and if they helped the pain. This was similar to reports from other groups of Medicaid patients who took the more general surveys, although this quality was much lower for those with sickle cell than for other people with Medicaid. This showed that the sickle cell-specific survey can also accurately identify when care is not of high quality. 

Importance of this study: This study created a survey, the ASCQ-Me Quality of Care survey, which is a reliable way to measure people’s experience in the healthcare system and can identify both high and low quality of care specifically for SCD. It is relatively short and easy to use and provides a way to better understand and compare where healthcare is done and it needs to be improved for adults with SCD.

organization: American Institutes for Research, Chapel Hill; University of California San Francisco Benioff Children's Hospital Oakland; University of Colorado; National Heart, Lung, and Blood Institute, Bethesda; Virginia Commonwealth University, Richmond

DOI: 10.1097/MD.0000000000004528

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