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Wally R. Smith, MD Florence Neal Cooper Smith Professor of Sickle Cell Disease Managing Sickle Cell Disease Pain

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Page 1: Wally R. Smith, MD Florence Neal Cooper Smith Professor of Sickle Cell Disease Managing Sickle Cell Disease Pain

Wally R. Smith, MDFlorence Neal Cooper Smith Professor of Sickle Cell Disease

Managing Sickle Cell Disease Pain

Page 2: Wally R. Smith, MD Florence Neal Cooper Smith Professor of Sickle Cell Disease Managing Sickle Cell Disease Pain

The Pain Response: Psychosocial factors associated with Sickle Cell Disease and

Health Care Utilization

Page 3: Wally R. Smith, MD Florence Neal Cooper Smith Professor of Sickle Cell Disease Managing Sickle Cell Disease Pain

The Majority of SCD Patients Have Pain on Over Half Their Days

Page 4: Wally R. Smith, MD Florence Neal Cooper Smith Professor of Sickle Cell Disease Managing Sickle Cell Disease Pain

Most SCD Pain is Managed at Home

Page 5: Wally R. Smith, MD Florence Neal Cooper Smith Professor of Sickle Cell Disease Managing Sickle Cell Disease Pain

• Common, mostly moderate in severity

• Correlates with hemoglobin

• Interferes moderately with school, work and exercise

• Correlates w/ pain, sleep quality, anxiety, depression, stress, QoL

– Ameringer S, Elswick RK, Smith W. Fatigue in Adolescents and Young Adults with Sickle Cell Disease: Biological and Behavioral Correlates and Health-Related Quality of Life. Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses. 2014;31(1):6-17. doi:10.1177/1043454213514632.

Fatigue May be Nearly as Important as Pain

Page 6: Wally R. Smith, MD Florence Neal Cooper Smith Professor of Sickle Cell Disease Managing Sickle Cell Disease Pain

Summary: What we Know About Pain in SCD

The “What”• Pain is far more frequent than once

thought, the rule rather than the exception

• Most pain is NOT called a “crisis” by patients, and is treated at home

• Fatigue rivals pain as a reported SCD symptom

• Sleep and quality of life suffer without pain relief

The “Why”• The pain experience is very

individual-different people respond different ways

Page 7: Wally R. Smith, MD Florence Neal Cooper Smith Professor of Sickle Cell Disease Managing Sickle Cell Disease Pain

Unanswered Questions

• Does chronic SCD pain only result from patients with frequent acute pain? When does it start?

• Is SCD chronic pain from damaged nerves or brain rewiring?

• Does treatment with opioids (narcotics) help or hurt?

Page 8: Wally R. Smith, MD Florence Neal Cooper Smith Professor of Sickle Cell Disease Managing Sickle Cell Disease Pain

Reasons for Opioid Underuse

Page 9: Wally R. Smith, MD Florence Neal Cooper Smith Professor of Sickle Cell Disease Managing Sickle Cell Disease Pain

Reasons for Opioid Overuse

Page 10: Wally R. Smith, MD Florence Neal Cooper Smith Professor of Sickle Cell Disease Managing Sickle Cell Disease Pain

Results: Illustrative quotes

• Participant #10: “Yeah, I actually, just, stopped taking it… kinda worried about my dependency”.

– Shows an unwillingness to take opioids, for fear of being dependent

• Participant #16: “You know it slows me down… or makes me drowsy, if I have, you know things to do”.

– Illustrates patients’ dislike of side effects of opioids, interference with planned activities

• Participant #20: “maybe not taking it…the kids take advantage…’cause they know it makes me drowsy, and it puts me to sleeps so they… take advantage”.

– Illustrates patient caught between needing to use opioids for pain control and not wanting opioids for various reasons.

– Hypothesis: this can lead to various levels of adherence over time


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