Objectives

Efforts to describe depression have relied on top-down methods in which theory and clinical experience define depression but may not reflect the individuals’ experiences with depression. We assessed the degree of overlap between academic descriptions of depression and patient-reported symptoms as conceptualized in the Patient-Reported Outcomes Measurement Information System® (PROMIS®). By extension, this work assesses the degree of overlap between current clinical descriptions of depression and patient-reported symptoms.

Design

In this content analysis study, four focus groups were conducted across two sites to elicit symptoms and the experience of depression from depressed and medically ill patients.

Methods

Depressed and medically ill patients were asked to describe symptoms that characterize depression. Data were transcribed and then coded using an a priori list of 43 facets of depression derived from extant depression measures.

Results

Participants described 93% of the symptoms from the a priori list, supporting the validity of current depression measures. Interpersonal difficulties were underscored as was anger. In general, results from the focus groups did not require the generation of new items for depression and supported the content validity of the PROMIS hierarchical framework and item pool created originally.

Conclusions

This work supports the validity of current depression assessment, but suggests further investigation of interpersonal functioning and anger may add to the depth and breadth of depression assessment.

Background

The objective of this study was to develop simultaneously a new questionnaire, the Pediatric GERD Caregiver Impact Questionnaire (PGCIQ), in American English and American Spanish in order to elucidate the impact of caring for a child with GERD.

Methods

Two focus group discussions were conducted in American English and American Spanish to develop a relevant conceptual model. Focus group participants were the primary caregivers of children with GERD (newborn through 12 years of age). Participant responses were qualitatively analyzed to identify potential differences in caregiver perspectives by the caregiver's language, socio-economic status and demographic profile as well as the child's age and disease severity level. Items in the PGCIQ were generated simultaneously in English and Spanish by reviewing results of qualitative analysis from focus groups in each language. The PGCIQ was finalized in both languages after testing content validity and conducting an in-depth translatability assessment.

Results

Analysis of focus group comments resulted in the development of a first draft questionnaire consisting of 58 items in 10 domains. Content validity testing and an in-depth translatability assessment resulted in wording modification of 37 items, deletion of 14 items and the addition of a domain with five items. Feedback from the content validity testing interviews indicated that the instrument is conceptually relevant in both American English and American Spanish, clear, comprehensive and easy to complete within 10 minutes. The final version of the PGCIQ contains 49 items assessing ten domains. An optional module with nine items is available for investigative research purposes and for use only at baseline.

Conclusion

The PGCIQ was developed using simultaneous item generation, a process that allows for consideration of concept relevance in all stages of development and in all languages being developed. The PGCIQ is the first questionnaire to document the multidimensional impact of caring for an infant or young child with GERD. Linguistic adaptation of the PGCIQ in multiple languages is ongoing. A validation study of the PGCIQ is needed to examine its psychometric properties, further refine the items and develop an appropriate scoring model.