Age Groups

• Use the PROMIS Early Childhood Parent-Report measures.
• Use NIH Toolbox® Parent Report Emotion measures for children ages 3-7.

• Both the PROMIS Parent Proxy and PROMIS Early Childhood Parent-Report measures can be used with 5-year-olds. Select either one.
  • For longitudinal research and/or ongoing clinical follow-up, use the measure that aligns with the majority of the time frame with which the child will be studied. For example, if the measure is administered at child age 1 year through child age 5 years, use the PROMIS Early Childhood Parent-Report measure.
  • If the child will be studied across both early childhood (ages 1-5) and beyond age 5, switching to the PROMIS Parent Proxy measure is necessary. Unfortunately, crosswalks have yet to be established to link scores from PROMIS Parent Proxy measures to PROMIS Early Childhood Parent-Report measures. In other words, each measure will still produce a T-score comparing the child to the general population in that measure’s tested age group, but these measures have different distributions. Thus, a child’s T-score on each measure is still informative but not equivalent across the two measures. Please keep this in mind when designing studies and analyzing results that utilize both PROMIS Early Childhood Parent-Report and PROMIS Parent Proxy.
• Use NIH Toolbox Parent Report Emotion measures for children ages 3-7.

PROMIS

• Use PROMIS Parent Proxy measures with 5- to 8-year-old children.
• For longitudinal research and/or ongoing clinical follow-up, children will become old enough to complete a self-report measure. Pediatric self-report (i.e., PROMIS Pediatric) is optimal for measuring outcomes among children ages 8 to 17 who can self-report. Consequently, it is desirable to transition from the parent proxy measure to the pediatric self-report measure. Unfortunately, it is not possible to compare scores from PROMIS Parent Proxy and PROMIS Pediatric measures. Each measure will produce a T-score comparing the child to the general population in that measure’s tested age group, but these measures have different respondents and different score distributions. Thus, a child’s T-score on each measure is still informative but not equivalent across the two measures. Please keep this in mind when designing studies and analyzing results that utilize both PROMIS Parent Proxy and PROMIS Pediatric.
• If feasible, collect both the pediatric self-report and parent proxy report measures for children 8 years old and older. Their perspectives may be independently informative.

NIH Toolbox

• Use NIH Toolbox Parent Report Emotion measures for children ages 3-7.
• For 8-year-olds, you have two options: a) use a different parent report measure (NIH Toolbox Parent Report Emotion measures for children ages 8-12) or b) use a self-report measure (NIH Toolbox Pediatric Emotion measures for children ages 8-17). Unfortunately, it is not possible to compare scores from NIH Toolbox Parent Report ages 3-7, NIH Toolbox Parent Report ages 8-12, and NIH Toolbox Pediatric Self-Report measures. Each measure will produce a T-score comparing the child to the general population in that measure’s tested age group, but these measures have different respondents and different score distributions. Thus, a child’s T-score on each measure is still informative but not equivalent across the three measures. Like PROMIS, pediatric self-report (i.e., NIH Toolbox Pediatric) is optimal for measuring outcomes among children ages 8 to 17 who can self-report. Consequently, it is desirable to transition to the Pediatric measure.
• Please account for not being able to compare scores between measures when designing studies and analyzing results that utilize both NIH Toolbox Parent Report and NIH Toolbox Pediatric.

• Use PROMIS Pediatric measures with 8- to 17-year-old children.
• Use NIH Toolbox Pediatric (ages 8-17) self-report measures with 8- to 17-year-old children.
  • Note that for some domains (e.g., Positive Affect) there are different measures for 8-12-year-olds and 13-17-year-olds. Unfortunately, scores from these measures are not comparable.
  • Some domains (e.g., Perceived Stress) only have measures for 13-17-year-olds.
• Use Neuro-QoL™ Pediatric measures with 8- to 17-year-old children.

• Pediatric respondents will “age out” of the PROMIS, NIH Toolbox, and Neuro-QoL Pediatric measures at age 18. If your respondents are aged 8-17 but you also include a small number of very young adults (e.g., 18-20-year-olds), use the pediatric measures for all respondents.
  • This prioritizes keeping all respondents on the same metric and increases the likelihood that the items are understood by all respondents.
  • However, some of the measure content may not be relevant for young adults. For example, a pediatric measure may reference “kids my age”, “school”, and “playing” which may be difficult for a young/emerging adult to answer.
• If your respondents include 16- and 17-year-old adolescents and respondents 18 and older, use the adult self-report measures for all respondents.
  • This prioritizes keeping all respondents on the same metric.
  • Unfortunately, there is limited information on how well individuals under 18 interpret and answer items from a specific adult measure. Reeve and colleagues (2017) found adolescents age 16+ were able to complete adult patient-reported outcome measures. Ideally, you should assess the performance of adult measures you are using with adolescents.
  • An alternative and less desirable approach is to use the pediatric self-report measures for 16- to 17-year-olds and transform their scores to the adult metric using linking tables (e.g., Reeve et al., 2016) for analyses. Linking tables provide estimated PROMIS Adult scores from the Pediatric scores of 16- and 17-year-olds. However, using a linking table introduces additional measurement error (i.e., reduces score precision) and linking tables are not available for all domains. We discourage the use of linked scores to interpret individual change over time.
• If your respondents include children/adolescents under 16-years old and adults (e.g., sample age range 14 – 30), we recommend using the pediatric measures with 8- to 17-year-olds and adult measures for those age 18 and up.
  • Use linking tables to transform pediatric measure scores to the adult metric or vice versa (e.g., Reeve et al., 2016). This enables all scores to be on the same metric for analyses.
  • Using a measure designed for a specific age group increases the likelihood that the measure content will be understood and relevant for all respondents.
  • However, linking tables only provide estimated scores. Using a linking table introduces additional measurement error (i.e., reduces score precision). Linking tables are not available for all domains. Linked scores are most appropriate when scores will be interpreted at the group level (e.g., group average) versus at the individual level.
  • If feasible, consider collecting both the pediatric and adult measures from all respondents.
    • This enables comparisons between measures such as evaluating the similarity between self- and proxy-reports of anxiety or the difference between a self-report measure score and a score converted to a different metric using a linking table.
    • The drawback is that this doubles the assessment burden on respondents.

• Use the PROMIS, NIH Toolbox, Neuro-QoL, or ASCQ-Me measures.
• At times, adults are not able to respond for themselves (e.g., cognitive function issues). HealthMeasures were not developed or tested with caregivers or others reporting on behalf of an adult respondent. The research literature indicates there may be differences between self- and proxy report, particularly for domains less apparent to others such as pain, fatigue, and emotional distress (e.g., Hays et al., 1995). For example, proxy respondents for adults who had a stroke reported more severe symptoms on PROMIS Global than patient self-report (Lapin et al., 2019).