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Full-Text Articles in Diseases
Attitudes Toward Personal Health Data Sharing Among People Living With Sickle Cell Disorder, Exemplar For Study Of Rare Disease Populations, Rebecca Baines, Sebastian Stevens, Zainab Garba-Sani, Arunangsu Chatterjee, Daniela Austin, Simon Leigh
Attitudes Toward Personal Health Data Sharing Among People Living With Sickle Cell Disorder, Exemplar For Study Of Rare Disease Populations, Rebecca Baines, Sebastian Stevens, Zainab Garba-Sani, Arunangsu Chatterjee, Daniela Austin, Simon Leigh
Journal of Patient-Centered Research and Reviews
Purpose: Rare conditions are often poorly understood, creating barriers in determining the value treatments can provide. This study explored barriers and facilitators to personal health data sharing among those with one particular group of rare hematologic disorders, ie, sickle cell disorder (SCD) and its variants.
Methods: A single online focus group among those > 18 years of age and living with SCD was conducted. Participants (N = 25) were recruited through a United Kingdom-based SCD charity. Discussions were transcribed verbatim, with data therein analyzed using inductive thematic analysis.
Results: Five primary motivators for sharing health data were identified: improving awareness; knowing …
Variation And Change Over Time In Promis-29 Survey Results Among Primary Care Patients With Type 2 Diabetes, Juell Homco, Kristin Rodriguez, David R. Bardach, Elizabeth A. Hahn, Suzanne Morton, Daren Anderson, David Kendrick, Sarah Hudson Scholle
Variation And Change Over Time In Promis-29 Survey Results Among Primary Care Patients With Type 2 Diabetes, Juell Homco, Kristin Rodriguez, David R. Bardach, Elizabeth A. Hahn, Suzanne Morton, Daren Anderson, David Kendrick, Sarah Hudson Scholle
Journal of Patient-Centered Research and Reviews
Purpose: We sought to describe results of patient-reported outcome measures implemented among primary care patients with diabetes and explore factors associated with changes in scores over time.
Methods: Two organizations serving diverse patient populations collected the PROMIS-29 survey at baseline and 3-month follow-up for patients with type 2 diabetes. Bayesian regression analysis was used to examine the relationship between patient characteristics and changes in PROMIS-29 scores. Exploratory analyses assessed relationships between goal-setting and changes in scores.
Results: The study population reported substantially more problems with physical functioning (mean: 42.5 at Site 1 and 38.9 at Site 2) and pain interference …