Presentation
DH3 - Evaluating the Role of Health Information Technology in Enhancing Sickle Cell Disease (SCD) Patient Care
DescriptionIntroduction:
Patients living with Sickle Cell Disease (SCD) often face complex and chronic healthcare needs, making the effective management of this condition a significant challenge. Utilizing Consumer Health Information Technologies (CHIT) can potentially enhance the quality of care provided to patients with SCD, improving their overall health outcomes and quality of life. This study seeks to evaluate the impact of CHIT on SCD care. We aim to assess the current state of CHIT adoption in the management of SCD, examine the impact of CHIT on SCD patient outcomes, explore the challenges and barriers faced by SCD patients, and identify the potential areas for improvement and future directions in the integration of CHIT in SCD management.
Methods:
This is a systematic literature review according to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines. This systematic review aims to explore the current Consumer Health Information Technologies to support patients with Sickle Cell disease and their family caregivers. We defined Consumer Health Information Technology (CHIT) as healthcare tools based on hardware or software that are primarily used by patients or family caregivers. CHIT is a broad term that includes various types of technologies such as patient portals, telemedicine, and mobile health applications/mHealth. It can be used by physicians as secondary users to improve patient-centered care.
This literature review includes collecting papers from PubMed, IEEE, ACM, Web of Science, Scopus, Science Direct, and SpringerLink. Also including the first five pages from Google Scholar as a secondary reference. The search string contains two groups of keywords representing Consumer Health Information Technologies and Sickle Cell Disease, connected by the logical operator "AND”. We used the Medical Subject Headings (MeSH) when applicable. The search string is defined as the following:
(("Sickle Cell") AND ("Medical Informatics Applications" OR "Consumer Health Informatics" OR "Digital Health" OR "User-Computer Interface" OR "Patient portals" OR "Electronic medical records" OR "Telemedicine" OR "Mobile Applications" OR "Health apps" OR "web application" OR "Web-Based" ))
Our inclusion and exclusion criteria are capturing journal papers and full conference proceeding papers, papers being written in English, papers being published between January 2013 and May 2023, excluding literature review papers, papers should address consumer health information technology for Sickle Cell patients or caregivers' families as primary users, and papers should report the impact of consumer technology on outcomes or report users’ perceptions of the technology.
The first author led the initial search, collected all the papers from the databases, and eliminated the duplications. All authors then conducted three rounds of selection to identify our final dataset. We applied the inclusion and exclusion criteria in all of the three rounds. In the first round, we screened the publications by reviewing the titles and abstracts. In the second round, we skimmed through the abstract, introduction, and conclusion. We chose inclusion over exclusion in the first two rounds in case of uncertainty. In the third round, we carefully reviewed all the remaining papers in entirety. During this round, we conservatively applied all the inclusion and exclusion criteria. In addition, we used the first five pages of Google Scholar search results to identify any additional papers that matched our inclusion and exclusion criteria as an additional search. Finally, we also checked the references of the final selected papers to explore more eligible papers. To mitigate potential selection bias, any discrepancies were resolved through discussion among all three authors. We documented detailed information for each publication including publication title, author name, and publication year. The data were recorded from each round and shared via an Excel file among all three authors. After obtaining the final data set, we documented additional data, including publication summary, technology type, technology outcomes and/or patient perception, study size, and limitations. We were able to identify five additional papers by tracing the references of each paper. Our final dataset includes 21 papers that align with the inclusion criteria.
Results:
Twenty-one papers were included in our study, that were published between 2013 to June 2023. The increase in publications observed in 2022 may indicate a potential growth in this research area. We observed that CHI technologies by Sickle cell patients and their parents were used in five primary areas including Effective Communication ( n=5), Education ( n=5), Pain Management ( n=5), Cognitive Training( n=2), and Medicine Adherence (n=4). Effective Communication technologies aim to enhance patient-provider interactions and the exchange of health information. Education categories empower the patients by providing SCD health information to better manage their healthcare. Pain Management technologies are used to monitor and manage patient health conditions to improve quality of life. Cognitive Training technologies enhance cognitive performance and psychological well-being. Adherence technologies support medication compliance and track medication usage. Each focus area influences healthcare outcomes and the overall well-being of patients with SCD.
Most CHI technologies are targeted at addressing the concerns and challenges encountered by patients with limited emphasis on the experiences of family caregivers. Mobile Health applications (mHealth) were the most frequently used technology with several publications (n = 9). The focus on mHealth reflects the growing interest in using mobile devices to improve healthcare delivery among children and adolescents diagnosed with SCD. Over the past ten years, there has been a strong focus on developing technologies to improve patient education and enhance doctor-patient communication, and pain management. The results yield a diversity of perspectives and outcomes. Overall, positive impacts were reported on clinical outcomes and patient perspectives. One of the common limitations observed in most of the studies is the small sample size which may affect the generalizability of the findings. Across all the studies, the minimum number of participants was 5 and the maximum was 271. Four studies were sampled from one institution. Most of the studies reported the possibility of selection bias. Some studies highlighted a shortage of internet access, technology resources in rural areas, and exclusion of non-English speakers. This shed light on the need for larger-scale studies with more diverse samples to provide more substantial results.
Conclusion:
In our comprehensive assessment of Consumer Health Information (CHI) technologies in the context of Sickle Cell Disease (SCD), we have identified several key areas where these technologies are making a meaningful impact. The five primary focus areas, namely Effective Communication, Education, Pain Management, Cognitive Training, and Medicine Adherence, have each demonstrated their unique contributions to enhancing healthcare outcomes and improving the overall well-being of patients with SCD. It is worth noting that the majority of studies primarily focused on children under the age of 21 who had SCD, highlighting the need for designed solutions to address the unique challenges faced by SCD patients. Also, our review highlights a lack of research examining the experiences of family caregivers in the context of CHI technologies for SCD care. It is important to mention that a common limitation across many of the studies is the relatively small sample sizes, which may impact the generalizability of their findings. Furthermore, a significant proportion of the studies were drawn from a single institution, potentially introducing selection bias. Some studies also pointed out challenges related to limited internet access, technology resources in rural areas, and the exclusion of non-English speakers. These findings emphasize the need for larger-scale, more diverse studies to provide more robust and comprehensive evidence on CHI impacts and gaps in SCD care.
Patients living with Sickle Cell Disease (SCD) often face complex and chronic healthcare needs, making the effective management of this condition a significant challenge. Utilizing Consumer Health Information Technologies (CHIT) can potentially enhance the quality of care provided to patients with SCD, improving their overall health outcomes and quality of life. This study seeks to evaluate the impact of CHIT on SCD care. We aim to assess the current state of CHIT adoption in the management of SCD, examine the impact of CHIT on SCD patient outcomes, explore the challenges and barriers faced by SCD patients, and identify the potential areas for improvement and future directions in the integration of CHIT in SCD management.
Methods:
This is a systematic literature review according to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines. This systematic review aims to explore the current Consumer Health Information Technologies to support patients with Sickle Cell disease and their family caregivers. We defined Consumer Health Information Technology (CHIT) as healthcare tools based on hardware or software that are primarily used by patients or family caregivers. CHIT is a broad term that includes various types of technologies such as patient portals, telemedicine, and mobile health applications/mHealth. It can be used by physicians as secondary users to improve patient-centered care.
This literature review includes collecting papers from PubMed, IEEE, ACM, Web of Science, Scopus, Science Direct, and SpringerLink. Also including the first five pages from Google Scholar as a secondary reference. The search string contains two groups of keywords representing Consumer Health Information Technologies and Sickle Cell Disease, connected by the logical operator "AND”. We used the Medical Subject Headings (MeSH) when applicable. The search string is defined as the following:
(("Sickle Cell") AND ("Medical Informatics Applications" OR "Consumer Health Informatics" OR "Digital Health" OR "User-Computer Interface" OR "Patient portals" OR "Electronic medical records" OR "Telemedicine" OR "Mobile Applications" OR "Health apps" OR "web application" OR "Web-Based" ))
Our inclusion and exclusion criteria are capturing journal papers and full conference proceeding papers, papers being written in English, papers being published between January 2013 and May 2023, excluding literature review papers, papers should address consumer health information technology for Sickle Cell patients or caregivers' families as primary users, and papers should report the impact of consumer technology on outcomes or report users’ perceptions of the technology.
The first author led the initial search, collected all the papers from the databases, and eliminated the duplications. All authors then conducted three rounds of selection to identify our final dataset. We applied the inclusion and exclusion criteria in all of the three rounds. In the first round, we screened the publications by reviewing the titles and abstracts. In the second round, we skimmed through the abstract, introduction, and conclusion. We chose inclusion over exclusion in the first two rounds in case of uncertainty. In the third round, we carefully reviewed all the remaining papers in entirety. During this round, we conservatively applied all the inclusion and exclusion criteria. In addition, we used the first five pages of Google Scholar search results to identify any additional papers that matched our inclusion and exclusion criteria as an additional search. Finally, we also checked the references of the final selected papers to explore more eligible papers. To mitigate potential selection bias, any discrepancies were resolved through discussion among all three authors. We documented detailed information for each publication including publication title, author name, and publication year. The data were recorded from each round and shared via an Excel file among all three authors. After obtaining the final data set, we documented additional data, including publication summary, technology type, technology outcomes and/or patient perception, study size, and limitations. We were able to identify five additional papers by tracing the references of each paper. Our final dataset includes 21 papers that align with the inclusion criteria.
Results:
Twenty-one papers were included in our study, that were published between 2013 to June 2023. The increase in publications observed in 2022 may indicate a potential growth in this research area. We observed that CHI technologies by Sickle cell patients and their parents were used in five primary areas including Effective Communication ( n=5), Education ( n=5), Pain Management ( n=5), Cognitive Training( n=2), and Medicine Adherence (n=4). Effective Communication technologies aim to enhance patient-provider interactions and the exchange of health information. Education categories empower the patients by providing SCD health information to better manage their healthcare. Pain Management technologies are used to monitor and manage patient health conditions to improve quality of life. Cognitive Training technologies enhance cognitive performance and psychological well-being. Adherence technologies support medication compliance and track medication usage. Each focus area influences healthcare outcomes and the overall well-being of patients with SCD.
Most CHI technologies are targeted at addressing the concerns and challenges encountered by patients with limited emphasis on the experiences of family caregivers. Mobile Health applications (mHealth) were the most frequently used technology with several publications (n = 9). The focus on mHealth reflects the growing interest in using mobile devices to improve healthcare delivery among children and adolescents diagnosed with SCD. Over the past ten years, there has been a strong focus on developing technologies to improve patient education and enhance doctor-patient communication, and pain management. The results yield a diversity of perspectives and outcomes. Overall, positive impacts were reported on clinical outcomes and patient perspectives. One of the common limitations observed in most of the studies is the small sample size which may affect the generalizability of the findings. Across all the studies, the minimum number of participants was 5 and the maximum was 271. Four studies were sampled from one institution. Most of the studies reported the possibility of selection bias. Some studies highlighted a shortage of internet access, technology resources in rural areas, and exclusion of non-English speakers. This shed light on the need for larger-scale studies with more diverse samples to provide more substantial results.
Conclusion:
In our comprehensive assessment of Consumer Health Information (CHI) technologies in the context of Sickle Cell Disease (SCD), we have identified several key areas where these technologies are making a meaningful impact. The five primary focus areas, namely Effective Communication, Education, Pain Management, Cognitive Training, and Medicine Adherence, have each demonstrated their unique contributions to enhancing healthcare outcomes and improving the overall well-being of patients with SCD. It is worth noting that the majority of studies primarily focused on children under the age of 21 who had SCD, highlighting the need for designed solutions to address the unique challenges faced by SCD patients. Also, our review highlights a lack of research examining the experiences of family caregivers in the context of CHI technologies for SCD care. It is important to mention that a common limitation across many of the studies is the relatively small sample sizes, which may impact the generalizability of their findings. Furthermore, a significant proportion of the studies were drawn from a single institution, potentially introducing selection bias. Some studies also pointed out challenges related to limited internet access, technology resources in rural areas, and the exclusion of non-English speakers. These findings emphasize the need for larger-scale, more diverse studies to provide more robust and comprehensive evidence on CHI impacts and gaps in SCD care.
Event Type
Poster Presentation
TimeMonday, March 254:45pm - 6:15pm CDT
LocationSalon C
Digital Health
Simulation and Education
Hospital Environments
Medical and Drug Delivery Devices
Patient Safety Research and Initiatives