59,152 responses from 2,125 respondents to 28 items.
One of 4 tables from the same source; this one is the promis29 table. The others are listed under Related tables.
| Description | PROMIS-29 Profile v2.0 domain items (28 items, 1-5: physical function, anxiety, depression, fatigue, sleep disturbance, social roles, pain interference), 2,125 U.S. adults with hypermobile Ehlers-Danlos syndrome or hypermobility spectrum disorder |
|---|---|
| Reference | Estrella, E., & Frazier, P. A. (2024). Healthcare experiences among adults with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorder in the United States. Disability and Rehabilitation, 46(4), 731-740. |
| DOI | 10.1080/09638288.2023.2176554 |
| Licence | CC BY 4.0 |
| Source data | https://osf.io/gsr7j/ |
| Responses | 59,152 |
|---|---|
| Respondents | 2,125 |
| Items | 28 |
| Response categories | 5 |
| Responses per respondent | 27.836 |
| Responses per item | 2112.571 |
| Density | 0.994 |
| Longitudinal | FALSE |
| sample | Clinical, Internet-based |
|---|---|
| measurement tool | Survey/questionnaire |
| item format | Likert Scale/selected response |
| primary language(s) | eng |
This codebook is reconstructed by the IRW from the IRW data standard and the script that built it, estrella_2023_hypermobility.py. It is our best reading, not the source’s own codebook, and it may contain mistakes. Where the two disagree, the source data are the authority. If you find an error, please tell us.
| Column | What it is | Source column |
|---|---|---|
| IRW standard columns | ||
id | IRW standard Identifier for the focal unit being measured — typically a person, but sometimes another entity (e.g., a word in a lexical task). | made in the build script |
item | IRW standard Item identifier. | made in the build script |
resp | IRW standard Response value. | made in the build script |
| Respondent covariates | ||
cov_age | Covariate | made in the build script |
cov_area | Covariate | made in the build script |
cov_employment | Covariate | made in the build script |
cov_gender | Covariate | made in the build script |
cov_heds_dx | Covariate | made in the build script |
cov_hsd_dx | Covariate | made in the build script |
cov_income | Covariate | made in the build script |
What item codes and covariate values stand for is in the codebook released with the source data.
Or load it directly in R or Python:
# R (no account needed)
install.packages("remotes")
remotes::install_github("itemresponsewarehouse/Rpkg")
library(irw)
df <- irw_fetch("estrella_2023_promis29")
# Python (needs a free Redivis account)
pip install irw
import irw
df = irw.fetch("estrella_2023_promis29")
@article{Estrella_2023, title={Healthcare experiences among adults with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorder in the United States}, volume={46}, ISSN={1464-5165}, url={http://dx.doi.org/10.1080/09638288.2023.2176554}, DOI={10.1080/09638288.2023.2176554}, number={4}, journal={Disability and Rehabilitation}, publisher={Informa UK Limited}, author={Estrella, Emma and Frazier, Patricia A.}, year={2023}, month=Feb, pages={731–740} }
| IRW version | v540 |
|---|---|
| Redivis dataset | item_response_warehouse_6 v5.9 |
| Redivis dataset DOI | 10.57761/vzgw-d311 |
| Manifest pin for this IRW version | v5.8 |
| Metadata source | irw_meta v37.0 |