The overall objective of the Midwest Child Patient Reported Outcomes (M-cPROs) Consortium is to advance the understanding and measurement of cPROs in children with chronic disease using the Patient Reported Outcomes Measurement Information System(r) (PROMIS(r)) to allow for widespread use in both clinical care and research to optimize the well-being and functioning of the child. To achieve this objective, the scientific research projects within the M-cPROs Consortium aim to: 1) improve outcomes that matter to children with chronic disease by: understanding the impact of disease factors, including acute disease exacerbations on patient pain behavior, pain quality, physical activity, physical stress experience, strength impact, family belonging, and family involvement, assessing the relationship between family belonging and family involvement with other cPROs, and evaluating the impact of environmental stressors (e.g., socioeconomic deprivation) on patient pain behavior, pain quality, physical activity, physical stress experience, strength impact, family belonging, and family involvement; 2) validate new PROMIS measures in multiple chronic disease populations to support a common metric for cPROs measurement in children with chronic disease; and 3) determine whether PROMIS measures are responsive to change in health and whether that change is clinically relevant in children with chronic disease. To achieve these overall aims, we will assess cPROs using PROMIS measures in children with sickle cell disease, asthma, and diabetes. Both asthma and diabetes are increasingly prevalent. Furthermore, although sickle cell disease is rare, children with this disease, like those with asthma and diabetes, experience acute disease exacerbations that often result in acute healthcare utilization. These disease exacerbations occur more commonly in those with prior exacerbations and in families who are uninsured, who have public insurance, or who have low family income. Additional environmental stressors that represent socioeconomic deprivation may contribute to patient functioning and to their disease status. Furthermore, the child's perspective of their family, including whether they feel they belong or whether they feel they are involved in their family, are new constructs to explore in relationship to the child's cPROs and to their disease status. Leveraging the PROMIS common metric, it is possible to now compare across and within cohorts of children with chronic disease to fill some of these gaps in knowledge. The release of new PROMIS measures that focus on additional aspects of pain and physical health, along with new measures that focus on a children's perception of their family, provide an exciting opportunity for investigators in the M-cPROs Consortium to advance the field of cPROs research within cohorts of children with chronic disease.
Child patient reported outcomes (cPROs) provide the child's perspective of his/her well-being and functioning. Understanding cPROs in children with chronic disease provides insight into the burden of disease and opportunities to tailor care to optimize health. A validated common metric to measure cPROs that detects changes in health status relevant to the child is necessary to support incorporating cPROs into clinical care and research.
| Flynn, Kathryn E; Kliems, Harald; Saoji, Nikita et al. (2018) Content validity of the PROMIS® pediatric family relationships measure for children with chronic illness. Health Qual Life Outcomes 16:203 |
