Table 2.
Symptom | Knowledge Gaps | Barriers | Potential Solutionsa |
---|---|---|---|
Insomniab | Limited understanding of pathophysiology (i.e., sleep-wake cycle disruption with dialysis schedule, napping during dialysis, restless leg syndrome, extracellular hypervolemia, sleep apnea, uremic toxins) | Challenges in implementing CBT in dialysis settings | CBT adapted for dialysis settings |
Unknown if pathophysiology of insomnia differs by dialysis modality | Insomnia medications identified as high-risk by payers | Pharmacological treatments (e.g., sleep aids) | |
Limited knowledge of effect of insomnia on patient-reported and clinical outcomes | Low adherence to CPAP machines | Improvement in CPAP technology | |
Lack of PK/PD modeling studies of insomnia drugs among patients with ESKD | Stimulation to help patients stay awake during dialysis | ||
Muscle crampsc | Limited understanding of pathophysiology (i.e., electrolyte imbalance, muscle fatigue, fluid shifts, hypotension, neurologic). | Limited data to drive treatment selection | Intradialytic exercise |
No single, universally accepted definition of cramping | Patient reservations about reporting cramps to clinic personnel (personal pride, fear of being labeled as “difficult”) | Spicy substances (e.g., pickle juice, mustard) | |
Limited knowledge of effect of cramping on patient-reported and clinical outcomes | Lack of objective approaches to dry-weight estimation | Ultrafiltration rate reduction | |
Pharmacologic treatments (e.g., gabapentin, quinine) | |||
Technological advances in dry-weight estimation | |||
Fatigued | Limited understanding of pathophysiology (i.e., role of sleep disorders, mental health, anemia, ultrafiltration, uremia, comorbid medical conditions, treatment shift, modality) | Payer-driven dialysis scheduling, limited flexibility | Pharmacologic treatments (e.g., ESAs, psychostimulants) |
Lack of standardized approach to medical work-up of fatigue | Fatigue often multifactorial and may be without clear, modifiable root cause in some individuals | Physical exercise | |
Limited evidence on medication use for fatigue among patients with ESKD | Unclear ownership of medical work-up of fatigue (cost and provider barriers to acceptability) | CBT | |
Lack of objective approaches to dry-weight estimation | Standardized approach to medical work-up |
CBT, cognitive–behavioral therapy; CPAP, continuous positive airway pressure; PK/PD, pharmacokinetic/pharmacodynamic; ESAs, erythropoiesis-stimulating agents.
The overarching recommendations of payment reform, dialysis care delivery system modifications, and standardized symptom data collection as avenues by which to improve symptom management were common to all three symptoms and are excluded from the table.
Insomnia small group (n=12) included patients (n=2), care partner (n=1), nephrologists (n=3), researcher content expert (n=2), clinical pharmacist (n=1), payer representative (n=1), industry representative (n=1), and dialysis organization representative (n=1).
Muscle cramps small group (n=9) included patients (n=2), nephrologists (n=5), clinical pharmacist (n=1), and dialysis organization representative (n=1).
Fatigue group (n=23) included insomnia (n=12) and muscle cramps (n=9) participants and government representatives (n=2).