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Consumer Working Groups

Prior to the development of ASCQ-Me, in 2002, NHLBI convened a workshop of 100 researchers, sickle cell consumers and family members, physicians, nurses, social workers, and other experts to address quality of life issues of persons with SCD. A Consumers Working Group was created to meet and explore these issues from 2002 to 2003. Among the influences to quality of life that emerged from the working groups were:

  • cost of living with sickle cell disease
  • individual, family, and community resources/support systems that are needed
  • religion, spirituality, prayer, institutions, and the faith community
  • dating, relationships, and sexuality
  • family, parenting, and marriage
  • satisfaction with treatment and care
  • access to care
  • burden of treatment
  • emotional health (e.g. self-esteem, depression)
  • educational attainment
  • employment opportunities
  • individual coping strategies
  • discrimination

Initially Developed Domains

With input from the Survey Research Working Group, these topics were grouped into the following domains:

  • Somatic sensations, including symptom burden, pain, fatigue, and a general sense of well-being
  • Physical role function
  • Social role function, including family, intimate, and peer relations
  • Psychological functioning, including emotional and cognitive function
  • Spirituality
  • Patient and provider/health care system interactions

With the exception of patient and provider/health care system interactions, the Survey Research Working Group reclassified the consumer-generated topics into those that are often included in health-related quality of life (HRQOL) measures.

The ASCQ-Me Research Team[1] used the results of the NHLBI working groups to inform the selection of key words for the literature review, as well as the development of protocols for the patient focus groups. The team then integrated what was learned from the NHLBI Working Groups with what emerged from the literature, and from adults with SCD through the focus groups, to produce a draft conceptual framework. This framework was modified and expanded based on the results from the patient and provider critical incident interviews[1]

[1] Treadwell MJ, Hassell K, Levine R, Keller S. (2013). Adult sickle cell quality of life measurement information system (ASCQ-Me): Conceptual model based on review of the literature and formative research. Clinical Journal of Pain, Nov 28 [Epub ahead of print]