Underdiagnosis of PIDD in Minority and Underserved Populations
In the first episode of the Moving Toward Equity series, Dr. Gerry Lee, Dr. Carla Davis, and Dr. Vivian Hernandez-Trujillo discuss the underdiagnosis of PIDD in minority and disenfranchised communities.
Featuring:
Dr Hernandez-Trujillo has been involved in Hispanic outreach for over 20 years. Her basic laboratory experience involved studies of B cell immunodeficiency and agammaglobulinemia. She has partnered with both the Immune Deficiency Foundation and the ACAAI, as well as media, to increase awareness of PIDD through programs in Spanish for HCPs and patients on PIDDs and, most recently, on COVID. Her current interests include healthcare disparities in Allergy and Immunology disease.
Carla M. Davis, MD | Vivian Hernandez-Trujillo, MD
Dr. Davis has been involved with the identification of health disparities in the field of allergy/immunology and has formed research in primary immunodeficiencies for the past 20 years.Dr Hernandez-Trujillo has been involved in Hispanic outreach for over 20 years. Her basic laboratory experience involved studies of B cell immunodeficiency and agammaglobulinemia. She has partnered with both the Immune Deficiency Foundation and the ACAAI, as well as media, to increase awareness of PIDD through programs in Spanish for HCPs and patients on PIDDs and, most recently, on COVID. Her current interests include healthcare disparities in Allergy and Immunology disease.
Transcription:
Dr Gerry Lee: Primary immunodeficiency disorders or PIDDs affect all races and ethnicities, but certain groups have experienced greater social or economic barriers to diagnosis and treatment.
The goal of the Moving Toward Equity Podcast series is to raise awareness of the challenges, strategies, and resources for moving the needle toward equitable immunology care for all patients and practitioners in all communities.
Welcome to the podcast series from the American College of Allergy Asthma and Immunology. My name is Gerry Lee, and this is the first of a three-part series entitled "Moving Toward Equity: Disparities in Primary Immunodeficiency Disorders or PIDDs." In this episode, we will discuss underdiagnosis of PIDD in minority and underserved populations. Joining me are Dr. Vivian Hernandez-Trujillo, Director of the Division of Allergy and Immunology and the Fellowship Training Program Director at Nicklaus Children's Hospital. Dr. Hernandez-Trujillo has been involved in Hispanic outreach for over 20 years, and she has partners with both the Immune Deficiency Foundation and the ACAAI as well as media to raise awareness of PIDD through the programs in Spanish for healthcare providers and patients on PIDDs and most recently on COVID. And Dr. Carla Davis, the Chief of Immunology, Allergy and Retrovirology section of the Department of Pediatrics at Baylor College of Medicine at Texas Children's Hospital and the Janie and Sandra Queen Endowed Chair in Immunology and HIV/AIDS. Dr. Davis has been involved in the identification of health disparities in the field of allergy and immunology, has forward research in primary immunodeficiencies for the past 20 years. Welcome to the show, doctors.
Dr Vivian Hernandez-Trujillo: Thank you so much.
Dr Carla Davis: Thank you. It's my pleasure.
Dr Gerry Lee: Well, Dr. Hernandez-Trujillo, let's start with you. You know, we talk about the term health disparities. What is the definition of a health disparity? What does that mean to you? And why is it important for healthcare professionals to know about these?
Dr Vivian Hernandez-Trujillo: So healthcare disparity occurs in the presence of preventable differences in the burden of disease, whereby groups of socially disadvantaged populations are unable to achieve optimal health. And this is really important because health disparities can affect different aspects of healthcare. This includes access to care, quality of care, mental health, life expectancy, mortality, and lack of insurance. And then we as healthcare professionals who care for patients with primary immunodeficiency disorders really do need to be aware of these because our patients need to be properly identified and diagnosed.
Dr Gerry Lee: So, Dr. Davis, what are some of the groups that are most affected by health disparities in primary immunodeficiency disorders?
Dr Carla Davis: Well, in these disorders, Hispanic and black or African-American patients are really most affected by health disparities in primary immunodeficiency with the potential for delay in diagnosis and underdiagnosis in these groups. Other groups are more minimally affected, like Native Americans. Patients with Medicaid are also at risk for a delayed diagnosis or treatment.
Dr Gerry Lee: What are some of the studies that have shown disparities in diagnosis among these groups?
Dr Carla Davis: Well, the prevalence of primary immunodeficiency disease diagnosis has been noted through administrative healthcare databases. And here, it's highest in privately insured patients, which are typically utilized disproportionately by non-minority groups. So minority groups are more likely to have publicly insured healthcare and so several studies of diagnoses in urban clinical settings have reported an underrepresentation of primary immunodeficient patients among minorities, especially in the area of B-cell disorders. It's relatively unclear if this underrepresentation represents just a decreased prevalence of disease or missed or delayed diagnosIs.
There was a study that used a scoring algorithm and it was on the basis of ICD-9 codes to identify all hospitalized patients aged 60 years or less with a diagnosis of equal to or greater than two of the ICD-9 coded complications associated with immunodeficiency. There are about 174 of these. So the idea was to identify patients who could have an immunodeficiency by associated complications. And when this was done in a non-biased way, 61% of these patients identified were insured by Medicaid. And this was disproportionately higher than the general inpatient population. And then 86% of immunodeficient subjects in this population were Hispanic or black. And this identified really an undiagnosed cohort.
When we look or think about treatment for primary immunodeficiency disease, really transplantation is so important. And when matched unrelated donor searches are performed for minority patients with primary immunodeficiency diseases, most patients of Hispanic and African ancestry have very poor or a futile matched unrelated donor bone marrow searches. So, in the Hispanic population referred for allogeneic hematopoietic cell transplant, 71% had a poor or futile search and those of African ancestry had 63%. So the majority of the patients are having poor searches compared to patients of European descent. And then, African patients were the least likely to have a complete eight out of eight matched unrelated donor transplant at only 18%, while 41% of Southern European patients received transplants at rates similar to those of Asians and white Hispanics. So there is definitely an issue with identification of treatment or transplantation. And there may be an undiagnosed cohort in minority patients.
Dr Gerry Lee: Wow. So there's clearly some gaps in the diagnosis rates for both minority and underserved populations. And it's curious we're seeing gaps related to different races. Is that a genetic cause or is it a social component or is it both? Dr. Hernandez-Trujillo, what do we know about the causes of some of these disparities?
Dr Vivian Hernandez-Trujillo: So the causes of underdiagnosis of PIDDs in minority and underserved really relates both to a lack of access to care and the need for improved understanding by the patients and families that this problem exists, right? So the causes are likely both genetic and social. We don't even have a clear incidence and prevalence of PIDDs in the general population. I think that as our genetic testing has improved, we're going to have a better idea and I think that's very hopeful for all of us. But we certainly need to gain a better understanding of actual prevalence in our minority patients, racial, ethnic and then the socially disadvantaged. Patients also need to be able to communicate with the healthcare team in their primary language. And this is really a problem that needs to be addressed.
There was a recent article that reported some differences also in IgG levels by race, which I was fascinated by. And they described that Asian and black patients had higher mean concentrations in IgG as compared to white patients. So you may think, "Okay, well, why is this important?" It's important for a few reasons, but if patients of different races are compared to laboratory normals from a different race, we're likely underdiagnosing patients who may have PIDD in these groups. So that's really something that needs to be addressed.
In addition, males had higher IgG-4 concentrations than females. so there, you can Also see, there may be an underdiagnosis by sex or gender. And then in some patient populations, for example, the Navajo nation, the incidence of Artemis-deficient SCID, for example, results from a founder mutation. So those patients are disproportionally affected. So there's really a variety of reasons for this.
Dr Gerry Lee: Wow. Yeah. That's so fascinating. So let's see here. If Asian and black patients have higher mean levels of IgG, then their definition of hypogammaglobulinemia is clearly different from other population. And of course, there's certain founder populations with different metrics. And of course, there's the social barriers, not to mention different primary languages.
So Dr. Davis, what else do we know about other social determinants of health that leads to underdiagnosis of primary immunodeficiency?
Dr Carla Davis: Well, the social determinants of health are what these are called, these conditions in the environment where people exist, where they're born, live, where they go to school, work, play and worship. And these can include things like educational access and quality, neighborhood and what's called the built environment where people live. Also social and community context can be social determinants of health, so family influences and community influences on what a patient, would believe or accept as a treatment. Economic stability is a social determinant of health. And then, healthcare and quality is also important. This includes access to healthcare. And so interventions in all of these areas could impact health.
As Dr. Hernandez-Trujillo mentioned, really health, literacy and language barriers can really lead to an underdiagnosis due to lack of understanding of the disease and the urgency of treatment. Health literacy can be impacted by access to educational resources. And if the patient has material that's not in their native language, then they may not be able to understand really what the disease diagnosis and treatment will mean for the patient or for them. And if the neighborhood or area in which the patient lives is not close to a healthcare facility or the patient does not have reliable transportation to a tertiary care center to receive care, this could result in delay in diagnosis and treatment initiation. I think we've probably all as practitioners seen that in our practices.
In some cases, the patient or the patient's family can be surrounded by a community that historically has distrusted the conventional medical care given to them and so this also can cause a delay while alternative remedies might be given to the patient. And so if medical visits from an economical standpoint are associated with copays that are not affordable to the patient or if the patient is getting bills that they cannot afford, then this may also lead to delay in care because the patient may not come back to the office and it can lead to underdiagnosis if there are costs associated with tests. So from a standpoint of community and distrust, immigrant families may fear some interrogation by governmental authorities if they have too many contacts with medical facilities and/or persons from healthcare field. And so these are real concerns in our primary immunodeficiency patients and families, and we as healthcare providers should address them in order to ensure that they can be diagnosed and have prompt treatment.
I don't want to also neglect the very real issue of physician implicit bias, which is an unconscious assignment that we as healthcare providers can make towards people of different sex, race, ethnicity, all of these differences. And sometimes we can make assumptions that we're not even conscious of that can be associated with differential healthcare quality. And so this could also be playing a role. So we should all be aware of these above factors and they all actually need further study to determine the specific impact for our primary immunodeficient patients.
Dr Gerry Lee: Wow. Well, thank you, Dr. Davis, and thank you, Dr. Hernandez-Trujillo, for going over a summary of all the challenges some of these patients experience to obtain the diagnosis of primary immunodeficiency disorder.
This concludes part one of a three-part series on Moving Toward Equity: Disparities in Primary Immunodeficiencies from the ACAAI. Please be sure to join us for future episodes on addressing the barriers to diagnosis and improving access to the treatment of PIDD. For more resources around PIDD, visit education.acaai.org/disparities. And for other interesting episodes from Allergy Talk, please visit us at college.acaai.org/allergytalk. And we are also offering CME for this episode and future Allergy Talk podcasts. Please visit us at education.acaai.org/allergytalk. This is Gerry Lee from the American College of Allergy Asthma and Immunology. Have a wonderful day.
Dr Gerry Lee: Primary immunodeficiency disorders or PIDDs affect all races and ethnicities, but certain groups have experienced greater social or economic barriers to diagnosis and treatment.
The goal of the Moving Toward Equity Podcast series is to raise awareness of the challenges, strategies, and resources for moving the needle toward equitable immunology care for all patients and practitioners in all communities.
Welcome to the podcast series from the American College of Allergy Asthma and Immunology. My name is Gerry Lee, and this is the first of a three-part series entitled "Moving Toward Equity: Disparities in Primary Immunodeficiency Disorders or PIDDs." In this episode, we will discuss underdiagnosis of PIDD in minority and underserved populations. Joining me are Dr. Vivian Hernandez-Trujillo, Director of the Division of Allergy and Immunology and the Fellowship Training Program Director at Nicklaus Children's Hospital. Dr. Hernandez-Trujillo has been involved in Hispanic outreach for over 20 years, and she has partners with both the Immune Deficiency Foundation and the ACAAI as well as media to raise awareness of PIDD through the programs in Spanish for healthcare providers and patients on PIDDs and most recently on COVID. And Dr. Carla Davis, the Chief of Immunology, Allergy and Retrovirology section of the Department of Pediatrics at Baylor College of Medicine at Texas Children's Hospital and the Janie and Sandra Queen Endowed Chair in Immunology and HIV/AIDS. Dr. Davis has been involved in the identification of health disparities in the field of allergy and immunology, has forward research in primary immunodeficiencies for the past 20 years. Welcome to the show, doctors.
Dr Vivian Hernandez-Trujillo: Thank you so much.
Dr Carla Davis: Thank you. It's my pleasure.
Dr Gerry Lee: Well, Dr. Hernandez-Trujillo, let's start with you. You know, we talk about the term health disparities. What is the definition of a health disparity? What does that mean to you? And why is it important for healthcare professionals to know about these?
Dr Vivian Hernandez-Trujillo: So healthcare disparity occurs in the presence of preventable differences in the burden of disease, whereby groups of socially disadvantaged populations are unable to achieve optimal health. And this is really important because health disparities can affect different aspects of healthcare. This includes access to care, quality of care, mental health, life expectancy, mortality, and lack of insurance. And then we as healthcare professionals who care for patients with primary immunodeficiency disorders really do need to be aware of these because our patients need to be properly identified and diagnosed.
Dr Gerry Lee: So, Dr. Davis, what are some of the groups that are most affected by health disparities in primary immunodeficiency disorders?
Dr Carla Davis: Well, in these disorders, Hispanic and black or African-American patients are really most affected by health disparities in primary immunodeficiency with the potential for delay in diagnosis and underdiagnosis in these groups. Other groups are more minimally affected, like Native Americans. Patients with Medicaid are also at risk for a delayed diagnosis or treatment.
Dr Gerry Lee: What are some of the studies that have shown disparities in diagnosis among these groups?
Dr Carla Davis: Well, the prevalence of primary immunodeficiency disease diagnosis has been noted through administrative healthcare databases. And here, it's highest in privately insured patients, which are typically utilized disproportionately by non-minority groups. So minority groups are more likely to have publicly insured healthcare and so several studies of diagnoses in urban clinical settings have reported an underrepresentation of primary immunodeficient patients among minorities, especially in the area of B-cell disorders. It's relatively unclear if this underrepresentation represents just a decreased prevalence of disease or missed or delayed diagnosIs.
There was a study that used a scoring algorithm and it was on the basis of ICD-9 codes to identify all hospitalized patients aged 60 years or less with a diagnosis of equal to or greater than two of the ICD-9 coded complications associated with immunodeficiency. There are about 174 of these. So the idea was to identify patients who could have an immunodeficiency by associated complications. And when this was done in a non-biased way, 61% of these patients identified were insured by Medicaid. And this was disproportionately higher than the general inpatient population. And then 86% of immunodeficient subjects in this population were Hispanic or black. And this identified really an undiagnosed cohort.
When we look or think about treatment for primary immunodeficiency disease, really transplantation is so important. And when matched unrelated donor searches are performed for minority patients with primary immunodeficiency diseases, most patients of Hispanic and African ancestry have very poor or a futile matched unrelated donor bone marrow searches. So, in the Hispanic population referred for allogeneic hematopoietic cell transplant, 71% had a poor or futile search and those of African ancestry had 63%. So the majority of the patients are having poor searches compared to patients of European descent. And then, African patients were the least likely to have a complete eight out of eight matched unrelated donor transplant at only 18%, while 41% of Southern European patients received transplants at rates similar to those of Asians and white Hispanics. So there is definitely an issue with identification of treatment or transplantation. And there may be an undiagnosed cohort in minority patients.
Dr Gerry Lee: Wow. So there's clearly some gaps in the diagnosis rates for both minority and underserved populations. And it's curious we're seeing gaps related to different races. Is that a genetic cause or is it a social component or is it both? Dr. Hernandez-Trujillo, what do we know about the causes of some of these disparities?
Dr Vivian Hernandez-Trujillo: So the causes of underdiagnosis of PIDDs in minority and underserved really relates both to a lack of access to care and the need for improved understanding by the patients and families that this problem exists, right? So the causes are likely both genetic and social. We don't even have a clear incidence and prevalence of PIDDs in the general population. I think that as our genetic testing has improved, we're going to have a better idea and I think that's very hopeful for all of us. But we certainly need to gain a better understanding of actual prevalence in our minority patients, racial, ethnic and then the socially disadvantaged. Patients also need to be able to communicate with the healthcare team in their primary language. And this is really a problem that needs to be addressed.
There was a recent article that reported some differences also in IgG levels by race, which I was fascinated by. And they described that Asian and black patients had higher mean concentrations in IgG as compared to white patients. So you may think, "Okay, well, why is this important?" It's important for a few reasons, but if patients of different races are compared to laboratory normals from a different race, we're likely underdiagnosing patients who may have PIDD in these groups. So that's really something that needs to be addressed.
In addition, males had higher IgG-4 concentrations than females. so there, you can Also see, there may be an underdiagnosis by sex or gender. And then in some patient populations, for example, the Navajo nation, the incidence of Artemis-deficient SCID, for example, results from a founder mutation. So those patients are disproportionally affected. So there's really a variety of reasons for this.
Dr Gerry Lee: Wow. Yeah. That's so fascinating. So let's see here. If Asian and black patients have higher mean levels of IgG, then their definition of hypogammaglobulinemia is clearly different from other population. And of course, there's certain founder populations with different metrics. And of course, there's the social barriers, not to mention different primary languages.
So Dr. Davis, what else do we know about other social determinants of health that leads to underdiagnosis of primary immunodeficiency?
Dr Carla Davis: Well, the social determinants of health are what these are called, these conditions in the environment where people exist, where they're born, live, where they go to school, work, play and worship. And these can include things like educational access and quality, neighborhood and what's called the built environment where people live. Also social and community context can be social determinants of health, so family influences and community influences on what a patient, would believe or accept as a treatment. Economic stability is a social determinant of health. And then, healthcare and quality is also important. This includes access to healthcare. And so interventions in all of these areas could impact health.
As Dr. Hernandez-Trujillo mentioned, really health, literacy and language barriers can really lead to an underdiagnosis due to lack of understanding of the disease and the urgency of treatment. Health literacy can be impacted by access to educational resources. And if the patient has material that's not in their native language, then they may not be able to understand really what the disease diagnosis and treatment will mean for the patient or for them. And if the neighborhood or area in which the patient lives is not close to a healthcare facility or the patient does not have reliable transportation to a tertiary care center to receive care, this could result in delay in diagnosis and treatment initiation. I think we've probably all as practitioners seen that in our practices.
In some cases, the patient or the patient's family can be surrounded by a community that historically has distrusted the conventional medical care given to them and so this also can cause a delay while alternative remedies might be given to the patient. And so if medical visits from an economical standpoint are associated with copays that are not affordable to the patient or if the patient is getting bills that they cannot afford, then this may also lead to delay in care because the patient may not come back to the office and it can lead to underdiagnosis if there are costs associated with tests. So from a standpoint of community and distrust, immigrant families may fear some interrogation by governmental authorities if they have too many contacts with medical facilities and/or persons from healthcare field. And so these are real concerns in our primary immunodeficiency patients and families, and we as healthcare providers should address them in order to ensure that they can be diagnosed and have prompt treatment.
I don't want to also neglect the very real issue of physician implicit bias, which is an unconscious assignment that we as healthcare providers can make towards people of different sex, race, ethnicity, all of these differences. And sometimes we can make assumptions that we're not even conscious of that can be associated with differential healthcare quality. And so this could also be playing a role. So we should all be aware of these above factors and they all actually need further study to determine the specific impact for our primary immunodeficient patients.
Dr Gerry Lee: Wow. Well, thank you, Dr. Davis, and thank you, Dr. Hernandez-Trujillo, for going over a summary of all the challenges some of these patients experience to obtain the diagnosis of primary immunodeficiency disorder.
This concludes part one of a three-part series on Moving Toward Equity: Disparities in Primary Immunodeficiencies from the ACAAI. Please be sure to join us for future episodes on addressing the barriers to diagnosis and improving access to the treatment of PIDD. For more resources around PIDD, visit education.acaai.org/disparities. And for other interesting episodes from Allergy Talk, please visit us at college.acaai.org/allergytalk. And we are also offering CME for this episode and future Allergy Talk podcasts. Please visit us at education.acaai.org/allergytalk. This is Gerry Lee from the American College of Allergy Asthma and Immunology. Have a wonderful day.