Key Findings
- Purpose To describe the aging experiences and priorities of adults with SCD aged ≥50 so clinicians can deliver better care for this growing population.
- Population
Semi-structured interviews, followed by content analysis for themes and subthemes, with 19 older adults (mean age 58 years):
- 47% female
- 47% employed
- 32% disabled
- Headline Result Older adults with SCD draw on a lifetime of hard-won strategies to manage their health in later years. The study found three main themes:
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- Challenges with aging: Internal struggles such as pain, fatigue, and limited physical function, as well as external barriers like difficulties at work, social stigma, and challenges within healthcare systems.
- Wisdom gained: Participants learned to avoid pain triggers, maintain regular activity and a healthy diet, and use both medical and non-medical coping strategies (including stress reduction and spiritual beliefs) to manage symptoms and improve quality of life.
- Living beyond life expectancy: Many exceeded the life span predicted for them, attributing longevity to factors such as faith, positive mindset, diligence with healthcare, and support from family and providers.
- Why It Matters Older adults with SCD face intersecting disease-specific and age-related problems (renal, cardiopulmonary, mobility) and often adopt practical self-management strategies clinicians can reinforce, e.g., trigger avoidance, regular activity, diet, advance planning. Centering clinical conversations on function, work support, and pragmatic prevention (vaccination, fall risk, bone health, renal screening) aligns care to what patients report matters most to their quality and longevity.
- Evidence Gaps & Limitations Single-site qualitative design (n = 19) limits generalizability. Findings reflect self-reported perceptions not objective clinical trajectories. Participants born before 1970 may have unique historical experiences that differ from younger cohorts. The study suggests priorities but does not test interventions to improve functional outcomes or longevity.