PROMIS

The Patient-Reported Outcomes Measurement Information System (PROMIS®) includes measures of physical, mental, and social health for adults and children.

PROMIS for very young children (<5 yrs)

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2 weeks 2 days ago #821

We are in the process of finalizing PROMIS parent-report measures for children ages 1-5yrs and they should be available on HealthMeasures soon. We decided not to include Life Satisfaction based on expert discussions and literature reviews, where we deemed the construct not developmentally appropriate for the younger kids. However, we developed conceptually aligned measures that are developmentally appropriate and cover engagement-related constructs of curiosity and persistence, as well as self-regulation constructs of frustration tolerance and flexibility. We also developed a positive affect measure that mirrors the current parent proxy report for 5-17yr olds. All of these new measures have positively framed items so instead of measuring the absence of illness/disease/impairment, these five new measures capture the presence of positive health and well-being.

We will also have the following measures that also align with the current parent proxy reports for older children:
global health, anxiety, depressive symptoms, irritability (aligns with current anger domain), sleep health (covers both sleep disturbance and sleep-related impairment), physical activity, and social relationships (covers child-caregiver affection, family relationships, and peer relationships).

Unfortunately, we do not have a pain interference or physical function measure right now.

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1 year 2 weeks ago #704

Thanks for your response. Sounds like we will have to come up with another approach for families with the younger children because I really don't want to exclude them completely. These families tend to be under-represented in studies, especially in the NICU population, so I'm leaning towards developing a more qualitative approach with semi-structured interviews but will do a more extensive lit review to see what's out there.

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1 year 2 weeks ago #702

For child self-report, NIH Toolbox Life Satisfaction is appropriate for children as young as 3 years, which may be a good option for you. However, that does not cover 1-2 years. The PROMIS Positive Affect parent proxy is the most appropriate existing PROMIS pediatric instrument to cover (one component of) well-being. That said, unfortunately there is no way within PROMIS to accurately score anything for kids under 5 since the existing banks were calibrated and normed with parents of 5+yr olds.

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1 year 3 weeks ago #701

We would like to use the pediatric and parent proxy Life Satisfaction, Pain Interference, and Physical Function measures in our clinic but would also like to include younger children, age range 1 mo to <5 yrs. Can we use the Parent proxy measure alone for these children/infants? What do you recommend?

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