TY - JOUR
T1 - The Sickle Cell Disease Functional Assessment (SCD-FA) tool
T2 - a feasibility pilot study
AU - Oyedeji, Charity I.
AU - Hall, Katherine
AU - Luciano, Alison
AU - Morey, Miriam C.
AU - Strouse, John J.
N1 - Funding Information:
We would like to acknowledge the contribution of the patients who participated in this study. We would like to acknowledge our research specialist, Arvind Mallikarjunan, who assisted with performing the SCD-FA on participants. We would also like to acknowledge Arti Hurria for sharing materials used in the oncology geriatric assessment study; may she rest in peace. We would also like to acknowledge Harvey Cohen for providing advice on focused geriatric assessment and Heather Whitson for providing guidance on selecting geriatric specific measures for this pilot study.
Funding Information:
Support for this study was provided by the Duke Claude D. Pepper Older Americans Independence Center (NIA P30AG028716) to CIO and JJS, the American Society of Hematology Research Training Award for Fellows held by CIO, and the Duke Center for Research to Advance Healthcare Equity (REACH Equity), which is supported by the National Institute on Minority Health and Health Disparities under award number U54MD012530 held by CIO.
Publisher Copyright:
© 2022, The Author(s).
PY - 2022/12
Y1 - 2022/12
N2 - Background: The life expectancy for individuals with sickle cell disease (SCD) has greatly increased over the last 50 years. Adults with SCD experience multiple complications such as cardiopulmonary disease, strokes, and avascular necrosis that lead to limitations that geriatric populations often experience. There are no dedicated instruments to measure functional decline and functional age to determine risk of future adverse outcomes in older adults with SCD. The objective of this study was to assess the feasibility of performing the Sickle Cell Disease Functional Assessment (SCD-FA). Methods: We enrolled 40 adults with SCD (20 younger adults aged 18–49 years as a comparison group and 20 older adults aged 50 years and older) in a single-center prospective cohort study. Participants were recruited from a comprehensive sickle cell clinic in an academic center in the southeastern United States. We included measures validated in an oncology geriatric assessment enriched with additional physical performance measures: usual gait speed, seated grip strength, Timed Up and Go, six-minute walk test, and 30-second chair stand. We also included an additional cognitive measure, which was the Montreal Cognitive Assessment, and additional patient-reported measures at the intersection of sickle cell disease and geriatrics. The primary outcome was the proportion completing the assessment. Secondary outcomes were the proportion consenting, duration of the assessment, acceptability, and adverse events. Results: Eighty percent (44/55) of individuals approached consented, 91% (40/44) completed the SCD-FA in its entirety, and the median duration was 89 min (IQR 80–98). There were no identified adverse events. On the acceptability survey, 95% (38/40) reported the length as appropriate, 2.5% (1/40) reported a question as upsetting, and 5% (2/40) reported portions as difficult. Exploratory analyses of physical function showed 63% (25/40) had a slow usual gait speed (< 1.2 m/s). Conclusion: The SCD-FA is feasible, acceptable, and safe and physical performance tests identified functional impairments in adults with SCD. These findings will inform the next phase of the study where we will assess the validity of the SCD-FA to predict patient-important outcomes in a larger sample of adults with SCD.
AB - Background: The life expectancy for individuals with sickle cell disease (SCD) has greatly increased over the last 50 years. Adults with SCD experience multiple complications such as cardiopulmonary disease, strokes, and avascular necrosis that lead to limitations that geriatric populations often experience. There are no dedicated instruments to measure functional decline and functional age to determine risk of future adverse outcomes in older adults with SCD. The objective of this study was to assess the feasibility of performing the Sickle Cell Disease Functional Assessment (SCD-FA). Methods: We enrolled 40 adults with SCD (20 younger adults aged 18–49 years as a comparison group and 20 older adults aged 50 years and older) in a single-center prospective cohort study. Participants were recruited from a comprehensive sickle cell clinic in an academic center in the southeastern United States. We included measures validated in an oncology geriatric assessment enriched with additional physical performance measures: usual gait speed, seated grip strength, Timed Up and Go, six-minute walk test, and 30-second chair stand. We also included an additional cognitive measure, which was the Montreal Cognitive Assessment, and additional patient-reported measures at the intersection of sickle cell disease and geriatrics. The primary outcome was the proportion completing the assessment. Secondary outcomes were the proportion consenting, duration of the assessment, acceptability, and adverse events. Results: Eighty percent (44/55) of individuals approached consented, 91% (40/44) completed the SCD-FA in its entirety, and the median duration was 89 min (IQR 80–98). There were no identified adverse events. On the acceptability survey, 95% (38/40) reported the length as appropriate, 2.5% (1/40) reported a question as upsetting, and 5% (2/40) reported portions as difficult. Exploratory analyses of physical function showed 63% (25/40) had a slow usual gait speed (< 1.2 m/s). Conclusion: The SCD-FA is feasible, acceptable, and safe and physical performance tests identified functional impairments in adults with SCD. These findings will inform the next phase of the study where we will assess the validity of the SCD-FA to predict patient-important outcomes in a larger sample of adults with SCD.
KW - Aging
KW - Frailty
KW - Functional assessment
KW - Gait speed
KW - Geriatric assessment
KW - Geriatrics
KW - Older adults
KW - Sickle cell disease
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U2 - 10.1186/s40814-022-01005-3
DO - 10.1186/s40814-022-01005-3
M3 - Article
C2 - 35246265
AN - SCOPUS:85126213810
SN - 2055-5784
VL - 8
JO - Pilot and Feasibility Studies
JF - Pilot and Feasibility Studies
IS - 1
M1 - 53
ER -