Health Literacy and Patient Activation in the Pediatric to Adult Transition in Systemic Lupus Erythematosus: Patient and Health Care Team Perspectives
Objective To identify perceived health literacy (HL) and patient activation (PA) needs during the transition from pediatric to adult rheumatology among patients with childhood‐onset systemic lupus erythematosus (cSLE). Methods Semistructured interviews of patients and health care professionals were...
| Main Authors: | , , , , , , |
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| Format: | Article |
| Language: | English |
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Wiley
2022-09-01
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| Series: | ACR Open Rheumatology |
| Online Access: | https://doi.org/10.1002/acr2.11474 |
| _version_ | 1797824513936719872 |
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| author | Ashley L. Ciosek Una E. Makris Justin Kramer Bonnie L. Bermas E. Blair Solow Tracey Wright Nicole Bitencourt |
| author_facet | Ashley L. Ciosek Una E. Makris Justin Kramer Bonnie L. Bermas E. Blair Solow Tracey Wright Nicole Bitencourt |
| author_sort | Ashley L. Ciosek |
| collection | DOAJ |
| description | Objective To identify perceived health literacy (HL) and patient activation (PA) needs during the transition from pediatric to adult rheumatology among patients with childhood‐onset systemic lupus erythematosus (cSLE). Methods Semistructured interviews of patients and health care professionals were conducted from November 2019 through May 2020, until thematic saturation was achieved. Interviews were audio‐recorded, transcribed, coded, and analyzed using thematic analysis. Results Thirteen post‐transition adult female participants with cSLE were recruited from a public safety‐net hospital system or from private practice. Thirteen health care team members were recruited from two pediatric and four adult rheumatology clinical sites serving patients in the same metropolitan area. Patients and health care team members acknowledged numerous HL components as important to transition, including language fluency, education, SLE‐specific knowledge, self‐efficacy, and accurate knowledge of personal medical history. Our interviews found PA to be an important component of the transition process, driven by internalization of the implications of cSLE diagnosis, self‐education, autonomy, introspection, and trustworthy doctor–patient relationships. Patients valued access to their online electronic medical record, recommended multimodal SLE‐specific education materials, and desired increased access to social workers. Health care team members stressed the importance of early preparation for transition and use of mobile medical applications and endorsed interventions such as lupus camp and increased partnership with psychologists and social workers. Conclusion HL and PA are perceived by patients and health care team members as substantially influencing transition success. Further research is needed to evaluate whether interventions to improve HL and PA positively influence cSLE transition outcomes. |
| first_indexed | 2024-03-13T10:40:06Z |
| format | Article |
| id | doaj.art-77adc220afd54ec5b8c3ae087912ff6d |
| institution | Directory Open Access Journal |
| issn | 2578-5745 |
| language | English |
| last_indexed | 2024-03-13T10:40:06Z |
| publishDate | 2022-09-01 |
| publisher | Wiley |
| record_format | Article |
| series | ACR Open Rheumatology |
| spelling | doaj.art-77adc220afd54ec5b8c3ae087912ff6d2023-05-18T04:45:49ZengWileyACR Open Rheumatology2578-57452022-09-014978279310.1002/acr2.11474Health Literacy and Patient Activation in the Pediatric to Adult Transition in Systemic Lupus Erythematosus: Patient and Health Care Team PerspectivesAshley L. Ciosek0Una E. Makris1Justin Kramer2Bonnie L. Bermas3E. Blair Solow4Tracey Wright5Nicole Bitencourt6University of Texas Southwestern Medical Center DallasUniversity of Texas Southwestern Medical Center and Veterans Administration North Texas Health Care System DallasTexas A&M University College StationUniversity of Texas Southwestern Medical Center DallasUniversity of Texas Southwestern Medical Center DallasUniversity of Texas Southwestern Medical Center, Texas Scottish Rite Hospital for Children, and Children's Health Dallas Dallas TexasLoma Linda University School of Medicine Loma Linda CaliforniaObjective To identify perceived health literacy (HL) and patient activation (PA) needs during the transition from pediatric to adult rheumatology among patients with childhood‐onset systemic lupus erythematosus (cSLE). Methods Semistructured interviews of patients and health care professionals were conducted from November 2019 through May 2020, until thematic saturation was achieved. Interviews were audio‐recorded, transcribed, coded, and analyzed using thematic analysis. Results Thirteen post‐transition adult female participants with cSLE were recruited from a public safety‐net hospital system or from private practice. Thirteen health care team members were recruited from two pediatric and four adult rheumatology clinical sites serving patients in the same metropolitan area. Patients and health care team members acknowledged numerous HL components as important to transition, including language fluency, education, SLE‐specific knowledge, self‐efficacy, and accurate knowledge of personal medical history. Our interviews found PA to be an important component of the transition process, driven by internalization of the implications of cSLE diagnosis, self‐education, autonomy, introspection, and trustworthy doctor–patient relationships. Patients valued access to their online electronic medical record, recommended multimodal SLE‐specific education materials, and desired increased access to social workers. Health care team members stressed the importance of early preparation for transition and use of mobile medical applications and endorsed interventions such as lupus camp and increased partnership with psychologists and social workers. Conclusion HL and PA are perceived by patients and health care team members as substantially influencing transition success. Further research is needed to evaluate whether interventions to improve HL and PA positively influence cSLE transition outcomes.https://doi.org/10.1002/acr2.11474 |
| spellingShingle | Ashley L. Ciosek Una E. Makris Justin Kramer Bonnie L. Bermas E. Blair Solow Tracey Wright Nicole Bitencourt Health Literacy and Patient Activation in the Pediatric to Adult Transition in Systemic Lupus Erythematosus: Patient and Health Care Team Perspectives ACR Open Rheumatology |
| title | Health Literacy and Patient Activation in the Pediatric to Adult Transition in Systemic Lupus Erythematosus: Patient and Health Care Team Perspectives |
| title_full | Health Literacy and Patient Activation in the Pediatric to Adult Transition in Systemic Lupus Erythematosus: Patient and Health Care Team Perspectives |
| title_fullStr | Health Literacy and Patient Activation in the Pediatric to Adult Transition in Systemic Lupus Erythematosus: Patient and Health Care Team Perspectives |
| title_full_unstemmed | Health Literacy and Patient Activation in the Pediatric to Adult Transition in Systemic Lupus Erythematosus: Patient and Health Care Team Perspectives |
| title_short | Health Literacy and Patient Activation in the Pediatric to Adult Transition in Systemic Lupus Erythematosus: Patient and Health Care Team Perspectives |
| title_sort | health literacy and patient activation in the pediatric to adult transition in systemic lupus erythematosus patient and health care team perspectives |
| url | https://doi.org/10.1002/acr2.11474 |
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