Contributions
Abstract: PB2413
Type: Publication Only
Background
Previously published research on sickle cell disease (SCD) demonstrates that patients experiencing a SCD-related pain crisis often treat themselves at home rather than seek medical care outside the home (e.g. medical professional such as a physician’s office or walk-in clinic, or by emergency services). Rapid initiation of treatment outside the home for patients experiencing a SCD-related pain crisis can be critical to minimize the risk of organ damage and reduce overall pain. What are the perceptions and treatment experiences that shape the decision to seek treatment outside the home for a SCD-related pain crisis?
Aims
To describe SCD patient and caregiver self-reported perceptions of barriers to seeking treatment outside the home for SCD-related pain crises.
Methods
Twelve patients (>=12 years of age) and six caregivers of patients <12 years of age with SCD were interviewed either in person (n=14) or by telephone (n=4) using a qualitative, exploratory interview approach. Patients had all experienced one or more sickle cell-related pain crisis in the past year.
Results
All patients interviewed (n=12) and one-third of caregivers (n=2) reported deliberately delaying seeking treatment outside the home when experiencing a SCD-related pain crisis. They also reported using a variety of pain crisis prevention and minimization strategies to delay care outside the home as long as possible. Strategies included: rest, hydration, music, meditation, and increased medication use. All patients described seeking treatment outside the home as typically the last resort; while the majority of caregivers of pediatric patients were more likely to initiate care inside the home, but seek care outside the home as pain levels escalated.
Of the subset of study participants who shared reasons for delaying seeking treatment outside the home (n=7), the most commonly reported reasons to delay or avoid treatment outside the home were: receiving stigmatizing attitudes from doctors and other treatment professionals or not being believed about pain levels (n=6) and long wait times in emergency rooms (n=4; participants could report more than one reason). Additional factors included: inadequate or ineffective treatment options (n=3), a lack of knowledge on SCD-related pain crises and SCD in general amongst (non-specialist) clinicians (n=2), and perceived racial discrimination (n=2). Most caregivers (n=4) reported a lack of education and/or knowledge about how to identify and mitigate a pain crisis, which delayed their ability to seek treatment outside the home.
Conclusion
Although this study was conducted with a small sample in the US, the findings emphasized the importance of understanding patient and caregiver perceptions of barriers and treatment experienced outside the home for SCD-related pain crises. Educating medical professionals, particularly non-specialists and emergency care personnel, about SCD may help reduce some of the barriers experienced by these patients and caregivers, ultimately helping patients by providing appropriate and timely pain relief and minimizing potential organ damage and other complications. In addition, it is important to ensure patients and caregivers are making treatment related decisions, about when to seek treatment outside the home, based on medical need rather than perceptions of medical professionals.
Session topic: 27. Sickle cell disease
Abstract: PB2413
Type: Publication Only
Background
Previously published research on sickle cell disease (SCD) demonstrates that patients experiencing a SCD-related pain crisis often treat themselves at home rather than seek medical care outside the home (e.g. medical professional such as a physician’s office or walk-in clinic, or by emergency services). Rapid initiation of treatment outside the home for patients experiencing a SCD-related pain crisis can be critical to minimize the risk of organ damage and reduce overall pain. What are the perceptions and treatment experiences that shape the decision to seek treatment outside the home for a SCD-related pain crisis?
Aims
To describe SCD patient and caregiver self-reported perceptions of barriers to seeking treatment outside the home for SCD-related pain crises.
Methods
Twelve patients (>=12 years of age) and six caregivers of patients <12 years of age with SCD were interviewed either in person (n=14) or by telephone (n=4) using a qualitative, exploratory interview approach. Patients had all experienced one or more sickle cell-related pain crisis in the past year.
Results
All patients interviewed (n=12) and one-third of caregivers (n=2) reported deliberately delaying seeking treatment outside the home when experiencing a SCD-related pain crisis. They also reported using a variety of pain crisis prevention and minimization strategies to delay care outside the home as long as possible. Strategies included: rest, hydration, music, meditation, and increased medication use. All patients described seeking treatment outside the home as typically the last resort; while the majority of caregivers of pediatric patients were more likely to initiate care inside the home, but seek care outside the home as pain levels escalated.
Of the subset of study participants who shared reasons for delaying seeking treatment outside the home (n=7), the most commonly reported reasons to delay or avoid treatment outside the home were: receiving stigmatizing attitudes from doctors and other treatment professionals or not being believed about pain levels (n=6) and long wait times in emergency rooms (n=4; participants could report more than one reason). Additional factors included: inadequate or ineffective treatment options (n=3), a lack of knowledge on SCD-related pain crises and SCD in general amongst (non-specialist) clinicians (n=2), and perceived racial discrimination (n=2). Most caregivers (n=4) reported a lack of education and/or knowledge about how to identify and mitigate a pain crisis, which delayed their ability to seek treatment outside the home.
Conclusion
Although this study was conducted with a small sample in the US, the findings emphasized the importance of understanding patient and caregiver perceptions of barriers and treatment experienced outside the home for SCD-related pain crises. Educating medical professionals, particularly non-specialists and emergency care personnel, about SCD may help reduce some of the barriers experienced by these patients and caregivers, ultimately helping patients by providing appropriate and timely pain relief and minimizing potential organ damage and other complications. In addition, it is important to ensure patients and caregivers are making treatment related decisions, about when to seek treatment outside the home, based on medical need rather than perceptions of medical professionals.
Session topic: 27. Sickle cell disease