Skip Navigation

Conceptual Framework

In the context of developing a measure, the conceptual framework can be thought of as the set of domains and sub-domains that must be addressed in order to provide a comprehensive assessment of the impact of a disease on a person’s health-related quality of life.  The final instrument does not have to assess every domain in the set; however, assembling a comprehensive or exhaustive set of domains and sub-domains—commonly called a taxonomy—is the first step needed to assure that important constructs are not overlooked.

The concepts behind the ASCQ-Me measures were based on a conceptual framework of how SCD affects adult lives which, in turn, was based on a comprehensive program of formative research and in a publication in the Clinical Journal of Pain. The portion of this conceptual framework that forms the basis of the current version of ASCQ-Me is indicated by the bold black font in the figures below. The topics in blue font are included in PROMIS. The topics in gray font require future development.

Flow chart of conceptual framework. A screenreader-only text description follows this image.

Text Description of Conceptual Framework:
The figure is a flow chart with two labeled circles and four labeled boxes linked by arrows. The chart is multi-directional. At each step, arrows point forward to one or more boxes or circles and back to the previous box or circle. Here the flow chart is described as lists in which the possible next steps are listed beneath each box label.

  1. (Circle) Interventions
    Medical care
    Coping techniques (future development)
    1. Forward to Pain
    2. Forward to Emotional Distress
    3. Forward to Physical Distress
  2. (Circle) Sickle Cell Disease
    1. Forward to Pain
  3. (Box) Pain
    Location (future development)
    1. Forward to Emotional Distress
    2. Forward to Role Functioning
    3. Forward to Physical Distress
  4.  (Box) Emotional Distress
    Anxiety/depression about Health
    Sense of Control (future development)
    Stigmatization - Self-Image (future development)
    Condition meaning (included in PROMIS)
    1. Forward to Role Functioning
    2. Back to Physical Distress
  5. (Box) Physical Distress
    ADL Impact
    Sleep Interference
    Fatigue (included in PROMIS)
    Cognitive Impact (included in PROMIS)
    1. Forward to Emotional Distress
  6. (Box) Role Functioning
    Work (paid /unpaid)
    1. Back to Emotional Distress