Health-related quality of life and economic impacts in adults with sickle cell disease with recurrent vaso-occlusive crises: findings from a prospective longitudinal real-world survey.
Saved in:
| Title: | Health-related quality of life and economic impacts in adults with sickle cell disease with recurrent vaso-occlusive crises: findings from a prospective longitudinal real-world survey. |
|---|---|
| Authors: | Drahos, Jennifer (AUTHOR), Boateng-Kuffour, Adriana (AUTHOR), Calvert, Melanie (AUTHOR), Valentine, Ashley (AUTHOR), Mason, Anthony (AUTHOR), Li, Nanxin (AUTHOR), Pakbaz, Zahra (AUTHOR), Shah, Farrukh T. (AUTHOR), Ainsworth, Nick (AUTHOR), Martin, Antony P. (AUTHOR) |
| Source: | Quality of Life Research. Jul2025, Vol. 34 Issue 7, p2019-2029. 11p. |
| Subjects: | Quality of life, Sickle cell anemia, Economic impact, Financial stress, Vaso-occlusive crises, Longitudinal method, Patient reported outcome measures, Chronic pain |
| Geographic Terms: | United Kingdom |
| Abstract: | Purpose: Characterize health-related quality of life (HRQoL) and economic impacts associated with sickle cell disease (SCD) with recurrent vaso-occlusive crises (VOCs). Methods: A prospective longitudinal real-world study was performed with adults with SCD with recurrent VOCs in the US and Europe (France, Germany, Italy, and the UK). Evidence of recurrent VOCs was self-reported (≥ 2 VOCs per year in each of the 2 years before enrolment). Study outcomes were reported at baseline, months 3, and 6 and included self-reported demographics, clinical characteristics, patient-reported outcome measures (EQ-5D-5 L VAS, FACT-G, FACIT-F, 11-point numerical rating scale [NRS] of pain, ASCQ-Me, WPAI), and bespoke questions on financial burden, stigma/prejudice, and time burden associated with SCD. Results: Participants (N = 142) reported an annual mean (standard deviation) of 5.9 (4.8) VOCs requiring hospitalization and 7.5 (7.7) VOCs requiring home management in the past 24 months. Participants reported fatigue and HRQoL impairment, demonstrated by significantly lower baseline EQ-5D-5 L utility and VAS, FACT-G, and FACIT-F scores compared to published information about the US general population. Participants also reported increased pain, stiffness, and emotional impacts compared to a reference sample of adults with SCD on the ASCQ-Me, and most (60%) reported moderate to extreme pain/discomfort on the NRS of pain. Out-of-pocket expenses represented a moderate-to-major burden for 61.9% of participants, with employed participants missing a mean of 9.8 h of work in the last 7 days. Conclusion: Participants reported significant impairments to their HRQoL and financial constraints associated with SCD with recurrent VOCs, indicating humanistic and economic burden and unmet needs in this population. Plain English summary: This study evaluated the effect of living with sickle cell disease and frequent pain crises on quality of life and personal finances. This study was carried out in the US and Europe, and participants were asked to complete several questionnaires relating to their health and economic challenges over a 6-month period. Our results showed that people living with sickle cell disease and frequent vaso-occlusive crises have worse quality of life and considerable financial burden compared to published information about the general population. These results emphasize the need for novel treatment options for sickle cell disease that improve quality of life. [ABSTRACT FROM AUTHOR] |
| Copyright of Quality of Life Research is the property of Springer Nature and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.) | |
| Database: | Psychology and Behavioral Sciences Collection |
|
Full text is not displayed to guests.
Login for full access.
|
|
| Abstract: | Purpose: Characterize health-related quality of life (HRQoL) and economic impacts associated with sickle cell disease (SCD) with recurrent vaso-occlusive crises (VOCs). Methods: A prospective longitudinal real-world study was performed with adults with SCD with recurrent VOCs in the US and Europe (France, Germany, Italy, and the UK). Evidence of recurrent VOCs was self-reported (≥ 2 VOCs per year in each of the 2 years before enrolment). Study outcomes were reported at baseline, months 3, and 6 and included self-reported demographics, clinical characteristics, patient-reported outcome measures (EQ-5D-5 L VAS, FACT-G, FACIT-F, 11-point numerical rating scale [NRS] of pain, ASCQ-Me, WPAI), and bespoke questions on financial burden, stigma/prejudice, and time burden associated with SCD. Results: Participants (N = 142) reported an annual mean (standard deviation) of 5.9 (4.8) VOCs requiring hospitalization and 7.5 (7.7) VOCs requiring home management in the past 24 months. Participants reported fatigue and HRQoL impairment, demonstrated by significantly lower baseline EQ-5D-5 L utility and VAS, FACT-G, and FACIT-F scores compared to published information about the US general population. Participants also reported increased pain, stiffness, and emotional impacts compared to a reference sample of adults with SCD on the ASCQ-Me, and most (60%) reported moderate to extreme pain/discomfort on the NRS of pain. Out-of-pocket expenses represented a moderate-to-major burden for 61.9% of participants, with employed participants missing a mean of 9.8 h of work in the last 7 days. Conclusion: Participants reported significant impairments to their HRQoL and financial constraints associated with SCD with recurrent VOCs, indicating humanistic and economic burden and unmet needs in this population. Plain English summary: This study evaluated the effect of living with sickle cell disease and frequent pain crises on quality of life and personal finances. This study was carried out in the US and Europe, and participants were asked to complete several questionnaires relating to their health and economic challenges over a 6-month period. Our results showed that people living with sickle cell disease and frequent vaso-occlusive crises have worse quality of life and considerable financial burden compared to published information about the general population. These results emphasize the need for novel treatment options for sickle cell disease that improve quality of life. [ABSTRACT FROM AUTHOR] |
|---|---|
| ISSN: | 09629343 |
| DOI: | 10.1007/s11136-025-03963-6 |
