Contributions
Abstract: PB2412
Type: Publication Only
Background
Sickle cell disease (SCD) affects approximately 100,000 individuals in the US. There are few published studies which document the impact SCD has on patients’ day to day activities and relationships. Qualitative research methods are ideal to gain an in-depth understanding of the ways in which SCD symptoms impact patients’ lives.
Aims
To describe SCD patients’ self-reported impacts of SCD symptoms/pain crises on their work, school, relationships, and social life.
Methods
Twelve patients (aged >=12) who experienced one or more sickle cell-related pain crises in the past year were interviewed either in person (n=9) or by telephone (n=3) using a qualitative, exploratory interview approach.
Results
Of the eight adult (aged >=18) patients interviewed, five reported having left the workforce due to the effects of their SCD and three remained employed. Three of the eight patients described having worked during pain crises despite pain and fatigue; two reported needing to make accommodations during their work day. Of the five currently unemployed, three had voluntarily retired and two had been displaced as a direct result of SCD. Of the three currently employed patients, two reported being restricted in their ability to perform their duties.
Of the adolescent patients interviewed (n=4, age ranged from 12-16), all reported one or more pain crisis episodes in which he or she missed between one and four days of school, and all reported experiencing presenteeism. Two reported that symptoms and absences due to crises resulted in getting behind on school work. All four reported missing gym and other physical activities at school to manage symptoms.
All 12 patients reported family and social relationships as either sources of stress, support, or both during pain crises. Seven of 12 described having one or more close friends or family members who did not understand pain crises, and labelled patients as “lazy” or “a crybaby.” Four of 12 patients reported minimizing contact with others during a pain crisis. Three of the eight adult patients reported experiencing anxiety at having to cancel plans at the last moment either due to the onset of a pain crisis or to prevent being exposed to a sick loved one for fear of the exposure triggering a crisis. Six of 8 adult patients reported having friends, family, and neighbors who offered support, planned recreational outings, and assisted with childcare, transportation, and errands. Adolescents did not report direct impacts on their relationships; however, three of the four reported envy of siblings and peers who could participate in activities such as sports and field trips while they could not due to SCD.
Conclusion
Living with SCD has a significant impact on patient’s physical and emotional well-being and social functioning for both adults and adolescents. Absenteeism and job loss due to SCD was common among the adult patients interviewed. Missing school and having difficulty completing schoolwork due to symptoms and crises may have future consequences for adolescents. The tendency to self-isolate due to a lack of understanding about SCD and the debilitating nature of pain crises amongst friends and family members further add to the social and economic consequences of SCD. Having a better understanding of patients’ experiences can help improve treatment for SCD and reduce its impact on a patient’s day to day life.
Session topic: 27. Sickle cell disease
Abstract: PB2412
Type: Publication Only
Background
Sickle cell disease (SCD) affects approximately 100,000 individuals in the US. There are few published studies which document the impact SCD has on patients’ day to day activities and relationships. Qualitative research methods are ideal to gain an in-depth understanding of the ways in which SCD symptoms impact patients’ lives.
Aims
To describe SCD patients’ self-reported impacts of SCD symptoms/pain crises on their work, school, relationships, and social life.
Methods
Twelve patients (aged >=12) who experienced one or more sickle cell-related pain crises in the past year were interviewed either in person (n=9) or by telephone (n=3) using a qualitative, exploratory interview approach.
Results
Of the eight adult (aged >=18) patients interviewed, five reported having left the workforce due to the effects of their SCD and three remained employed. Three of the eight patients described having worked during pain crises despite pain and fatigue; two reported needing to make accommodations during their work day. Of the five currently unemployed, three had voluntarily retired and two had been displaced as a direct result of SCD. Of the three currently employed patients, two reported being restricted in their ability to perform their duties.
Of the adolescent patients interviewed (n=4, age ranged from 12-16), all reported one or more pain crisis episodes in which he or she missed between one and four days of school, and all reported experiencing presenteeism. Two reported that symptoms and absences due to crises resulted in getting behind on school work. All four reported missing gym and other physical activities at school to manage symptoms.
All 12 patients reported family and social relationships as either sources of stress, support, or both during pain crises. Seven of 12 described having one or more close friends or family members who did not understand pain crises, and labelled patients as “lazy” or “a crybaby.” Four of 12 patients reported minimizing contact with others during a pain crisis. Three of the eight adult patients reported experiencing anxiety at having to cancel plans at the last moment either due to the onset of a pain crisis or to prevent being exposed to a sick loved one for fear of the exposure triggering a crisis. Six of 8 adult patients reported having friends, family, and neighbors who offered support, planned recreational outings, and assisted with childcare, transportation, and errands. Adolescents did not report direct impacts on their relationships; however, three of the four reported envy of siblings and peers who could participate in activities such as sports and field trips while they could not due to SCD.
Conclusion
Living with SCD has a significant impact on patient’s physical and emotional well-being and social functioning for both adults and adolescents. Absenteeism and job loss due to SCD was common among the adult patients interviewed. Missing school and having difficulty completing schoolwork due to symptoms and crises may have future consequences for adolescents. The tendency to self-isolate due to a lack of understanding about SCD and the debilitating nature of pain crises amongst friends and family members further add to the social and economic consequences of SCD. Having a better understanding of patients’ experiences can help improve treatment for SCD and reduce its impact on a patient’s day to day life.
Session topic: 27. Sickle cell disease