Abstract
Keywords
Henry J. Kaiser Family Foundation. Health insurance coverage of children 0–18. Available at: http://kff.org/other/state-indicator/children-0-18/. Accessed October 23, 2013.
Henry J. Kaiser Family Foundation. 2013 employer health benefits survey. Available at: http://kff.org/private-insurance/report/2013-employer-health-benefits/. Accessed October 23, 2013.
Concept of Pediatric Value
Family Context
Data Collection
National Heart, Lung, and Blood Institute. Children and clinical studies. Available at: http://www.nhlbi.nih.gov/childrenandclinicalstudies/index.php. Accessed October 23, 2013.
Domain (Child or Parent) | Outcome | Measure |
---|---|---|
1) Recovery from acute exacerbation | ||
Physiological (Child) | Lung function | - Pulmonary function testing |
Signs (Child) | Tachypnea | - Respiratory rate |
Wheezing | - Clinical evaluation of wheezing - Self-reported wheezing | |
Symptoms and Feelings (Child) | Asthma-specific symptoms | - PROMIS Pediatric Asthma Impact ∗ For more information on the measures developed by the NIH’s Patient Reported Outcome Measurement Information System (PROMIS) initiative, see http://www.nihpromis.org, where detailed descriptions of each measure and supporting references can be found. These measures are freely available as fixed-length forms or computerized adaptive tests. |
Fatigue | - PROMIS Pediatric Fatigue ∗ For more information on the measures developed by the NIH’s Patient Reported Outcome Measurement Information System (PROMIS) initiative, see http://www.nihpromis.org, where detailed descriptions of each measure and supporting references can be found. These measures are freely available as fixed-length forms or computerized adaptive tests. | |
Anxiety | - PROMIS Pediatric Anxiety ∗ For more information on the measures developed by the NIH’s Patient Reported Outcome Measurement Information System (PROMIS) initiative, see http://www.nihpromis.org, where detailed descriptions of each measure and supporting references can be found. These measures are freely available as fixed-length forms or computerized adaptive tests. | |
Depression | - PROMIS Pediatric Depressive Symptoms ∗ For more information on the measures developed by the NIH’s Patient Reported Outcome Measurement Information System (PROMIS) initiative, see http://www.nihpromis.org, where detailed descriptions of each measure and supporting references can be found. These measures are freely available as fixed-length forms or computerized adaptive tests. | |
Stress experiences | - PROMIS Pediatric Psychological Stress Experiences ∗ For more information on the measures developed by the NIH’s Patient Reported Outcome Measurement Information System (PROMIS) initiative, see http://www.nihpromis.org, where detailed descriptions of each measure and supporting references can be found. These measures are freely available as fixed-length forms or computerized adaptive tests. - PROMIS Pediatric Somatic Stress Experiences ∗ For more information on the measures developed by the NIH’s Patient Reported Outcome Measurement Information System (PROMIS) initiative, see http://www.nihpromis.org, where detailed descriptions of each measure and supporting references can be found. These measures are freely available as fixed-length forms or computerized adaptive tests. | |
Positive affect | - PROMIS Pediatric Positive Affect ∗ For more information on the measures developed by the NIH’s Patient Reported Outcome Measurement Information System (PROMIS) initiative, see http://www.nihpromis.org, where detailed descriptions of each measure and supporting references can be found. These measures are freely available as fixed-length forms or computerized adaptive tests. | |
Feelings (Parent) | Fatigue | - PROMIS Fatigue ∗ For more information on the measures developed by the NIH’s Patient Reported Outcome Measurement Information System (PROMIS) initiative, see http://www.nihpromis.org, where detailed descriptions of each measure and supporting references can be found. These measures are freely available as fixed-length forms or computerized adaptive tests. |
Anxiety | - PROMIS Anxiety ∗ For more information on the measures developed by the NIH’s Patient Reported Outcome Measurement Information System (PROMIS) initiative, see http://www.nihpromis.org, where detailed descriptions of each measure and supporting references can be found. These measures are freely available as fixed-length forms or computerized adaptive tests. | |
Depression | - PROMIS Depression ∗ For more information on the measures developed by the NIH’s Patient Reported Outcome Measurement Information System (PROMIS) initiative, see http://www.nihpromis.org, where detailed descriptions of each measure and supporting references can be found. These measures are freely available as fixed-length forms or computerized adaptive tests. | |
Stress experiences | - Perceived Stress Scale | |
Positive affect | - NIH Toolbox Positive Affect | |
Functioning (Child) | Mobility | - PROMIS Pediatric Mobility ∗ For more information on the measures developed by the NIH’s Patient Reported Outcome Measurement Information System (PROMIS) initiative, see http://www.nihpromis.org, where detailed descriptions of each measure and supporting references can be found. These measures are freely available as fixed-length forms or computerized adaptive tests. |
Physical activity | - PROMIS Pediatric Physical Activity ∗ For more information on the measures developed by the NIH’s Patient Reported Outcome Measurement Information System (PROMIS) initiative, see http://www.nihpromis.org, where detailed descriptions of each measure and supporting references can be found. These measures are freely available as fixed-length forms or computerized adaptive tests. - Accelerometry | |
Sleep | - Actigraphy - Pediatric Sleep Questionnaire | |
Functioning (Parent) | Sleep quality | - PROMIS Sleep-related Disturbance ∗ For more information on the measures developed by the NIH’s Patient Reported Outcome Measurement Information System (PROMIS) initiative, see http://www.nihpromis.org, where detailed descriptions of each measure and supporting references can be found. These measures are freely available as fixed-length forms or computerized adaptive tests. |
Wakefulness | - PROMIS Sleep-related Impairment ∗ For more information on the measures developed by the NIH’s Patient Reported Outcome Measurement Information System (PROMIS) initiative, see http://www.nihpromis.org, where detailed descriptions of each measure and supporting references can be found. These measures are freely available as fixed-length forms or computerized adaptive tests. | |
General Health (Child) | Global health | - PROMIS Pediatric Global Health ∗ For more information on the measures developed by the NIH’s Patient Reported Outcome Measurement Information System (PROMIS) initiative, see http://www.nihpromis.org, where detailed descriptions of each measure and supporting references can be found. These measures are freely available as fixed-length forms or computerized adaptive tests. |
General Health (Parent) | Global health | - PROMIS Global Health ∗ For more information on the measures developed by the NIH’s Patient Reported Outcome Measurement Information System (PROMIS) initiative, see http://www.nihpromis.org, where detailed descriptions of each measure and supporting references can be found. These measures are freely available as fixed-length forms or computerized adaptive tests. |
2) Quality of acute exacerbation management | ||
Timeliness of treatment (child) | Time to treatment for acute exacerbation | - Time from entry to ED to receipt of first treatment |
Time to resolution of acute exacerbation | - Time from entry to ED to resolution of an exacerbation | |
Timeliness of recovery (child) | Time to return to baseline physical functioning after acute exacerbation | - Repeated assessment of physical functioning ∗ and physical activityFor more information on the measures developed by the NIH’s Patient Reported Outcome Measurement Information System (PROMIS) initiative, see http://www.nihpromis.org, where detailed descriptions of each measure and supporting references can be found. These measures are freely available as fixed-length forms or computerized adaptive tests. ∗ using PROMIS measuresFor more information on the measures developed by the NIH’s Patient Reported Outcome Measurement Information System (PROMIS) initiative, see http://www.nihpromis.org, where detailed descriptions of each measure and supporting references can be found. These measures are freely available as fixed-length forms or computerized adaptive tests. |
Time to return to school after acute exacerbation | - Missed school days due to asthma exacerbation | |
Timeliness of recovery (parent) | Parental time to return to work after acute exacerbation | - Parental missed work days due to asthma exacerbation |
(3) Quality of chronic care management | ||
Effectiveness (child) | Asthma control | - PROMIS Pediatric Asthma Impact ∗ For more information on the measures developed by the NIH’s Patient Reported Outcome Measurement Information System (PROMIS) initiative, see http://www.nihpromis.org, where detailed descriptions of each measure and supporting references can be found. These measures are freely available as fixed-length forms or computerized adaptive tests. |
Acute exacerbations | - Acute asthma exacerbation rates - Time between acute exacerbations | |
Emergency department use | - Emergency department utilization | |
Hospital admission | - Inpatient or short stay admission rates | |
Length of hospital stay | - Asthma admission length of stay | |
(4) Long-term Outcomes | ||
Disease Progression (child) | Chronic asthma | - Chronic asthma incidence rates |
Friends (child) | Peer relationships | - PROMIS Pediatric Peer Relationships ∗ For more information on the measures developed by the NIH’s Patient Reported Outcome Measurement Information System (PROMIS) initiative, see http://www.nihpromis.org, where detailed descriptions of each measure and supporting references can be found. These measures are freely available as fixed-length forms or computerized adaptive tests. |
Friends (parent) | Loneliness | - PROMIS Social Isolation ∗ For more information on the measures developed by the NIH’s Patient Reported Outcome Measurement Information System (PROMIS) initiative, see http://www.nihpromis.org, where detailed descriptions of each measure and supporting references can be found. These measures are freely available as fixed-length forms or computerized adaptive tests. |
Family (child) | Family relationships | - PROMIS Pediatric Family Belonging ∗ For more information on the measures developed by the NIH’s Patient Reported Outcome Measurement Information System (PROMIS) initiative, see http://www.nihpromis.org, where detailed descriptions of each measure and supporting references can be found. These measures are freely available as fixed-length forms or computerized adaptive tests. - PROMIS Pediatric Family Involvement (child edition) ∗ For more information on the measures developed by the NIH’s Patient Reported Outcome Measurement Information System (PROMIS) initiative, see http://www.nihpromis.org, where detailed descriptions of each measure and supporting references can be found. These measures are freely available as fixed-length forms or computerized adaptive tests. |
Family (parent) | Family relationships | - PROMIS Pediatric Family Involvement (parent edition) ∗ For more information on the measures developed by the NIH’s Patient Reported Outcome Measurement Information System (PROMIS) initiative, see http://www.nihpromis.org, where detailed descriptions of each measure and supporting references can be found. These measures are freely available as fixed-length forms or computerized adaptive tests. |
School (child) | School engagement | - PHP School Engagement |
Absenteeism | - Annual days missed from school | |
Academic performance | - PHP Academic Performance - Grade point average - Standardized achievement testing | |
Work (parent) | Job engagement | - Utrecht Work Engagement Scale |
Absenteeism | - Annual days missed from work | |
Well-Being (child) | Life satisfaction | - PROMIS Pediatric Life Satisfaction ∗ For more information on the measures developed by the NIH’s Patient Reported Outcome Measurement Information System (PROMIS) initiative, see http://www.nihpromis.org, where detailed descriptions of each measure and supporting references can be found. These measures are freely available as fixed-length forms or computerized adaptive tests. |
Meaning and purpose | - PROMIS Pediatric Meaning and Purpose ∗ For more information on the measures developed by the NIH’s Patient Reported Outcome Measurement Information System (PROMIS) initiative, see http://www.nihpromis.org, where detailed descriptions of each measure and supporting references can be found. These measures are freely available as fixed-length forms or computerized adaptive tests. | |
Well-Being (parent) | Life satisfaction | - NIH Toolbox Life Satisfaction |
Meaning and purpose | - NIH Toolbox Meaning and Purpose |
Selecting the Patient/Family-Centered Outcomes
Considering Perspective in Assessing Value
Analytic Challenges
Silber JH, Rosenbaum PR, Ross RN, et al. Template matching for auditing hospital cost and quality. Health Serv Res 2014 March 3. http://dx.doi.org/10.1111/1475-6773.12156. [Epub ahead of print].
Value Dimension | |||||
---|---|---|---|---|---|
Outcome by Category | Recovery From Acute Exacerbation | Quality of Acute Exacerbation Management | Quality of Chronic Care Management | Long-Term Outcomes | Row-Weighted Aggregates |
Outcomes (direct standardization) | For each dimension: Provide a personalized sample of patients that are specifically of interest to the family. Answers the question: “In specific patients relevant to my child, eg with a specific type of asthma severity, what were the costs and outcomes for my health system compared to other health systems available to our family?” | ||||
Outcomes (indirect standardization) | For each dimension: Provide a sample of all children in the system. Answers the question: “How well does my health system perform with respect to costs and outcomes on the children they see in their system, compared to how these same patients would be performing at other systems available to my family?” | ||||
Patient-reported outcomes (direct standardization) | For each dimension: Provide a personalized sample of patients that are specifically of interest to the family. Answers the question: “In specific patients like my child, eg, with a specific type of asthma severity, what were the patient reported outcomes for my health system compared to other health systems available to our family?” | ||||
Patient-reported outcomes (indirect standardization) | For each dimension: Provide a sample of all children in the system. Answers the question: “How well does my health system perform with respect to patient reported outcomes of the children they see in their system, compared to how these same patients would be performing at other systems available to my family?” | ||||
Financial cost to family/society (direct standardization) | For each dimension: Provide a personalized sample of patients that are specifically of interest to the family. Answers the question: “In specific patients like my child, eg with a specific type of asthma severity, what were the costs for 1) my family and 2) my health system compared to what 1) my family's costs and 2) what other health systems costs would be in other systems available to our family?” | ||||
Financial cost to family/society (indirect standardization) | For each dimension: Provide a sample of all children in the system. Answers the question: “In general patients that my health system sees, how well does my system perform with respect to 1) family costs and 2) health system costs, on the children they see in their system, compared to how these same children would be accruing costs for 1) the family and 2) the system at other systems available to our family?” |
Conclusion
Acknowledgments
References
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Henry J. Kaiser Family Foundation. 2013 employer health benefits survey. Available at: http://kff.org/private-insurance/report/2013-employer-health-benefits/. Accessed October 23, 2013.
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Article Info
Publication History
Footnotes
The authors declare that they have no conflict of interest.
Publication of this article was supported by the US Department of Health and Human Services and the Agency for Healthcare Research and Quality.
The views expressed in this article are those of the authors and do not necessarily represent the views of the US Department of Health and Human Services or the Agency for Healthcare Research and Quality.