here - American Thoracic Society

American Thoracic Society
International Conference
May 16 - May 21
2014
ATS Innovations in
Health Equality Award
Highlights Book
Where today’s science meets tomorrow’s care
HealthEqualityBooklet14-cover.indd 1
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2014 ATS INNOVATIONS IN HEALTH EQUALITY AWARD
HIGHLIGHTS BOOK
PROGRAM BACKGROUND
The 2014 ATS Innovations in Health Equality Awards called for
individuals or programs to submit a brief application that describes
how their concept strives to reduce the differences in the quality of
health and health care across different populations. This includes
racial, ethnic, sexual orientation, and socioeconomic groups.
Two 2014 ATS Innovations in Health Equality Awards were
offered: one award to a clinically-focused initiative (selected by the
Clinicians Advisory Committee), and one to an initiative that focuses
on health equality policy, training, or career development (selected by
the Health Equality Subcommittee).
The committees ranked the applications on the following criteria:
Innovation: how unique is the initiative?
Implementation: how did the program implement its objectives and
how effective was the implementation?
Sustainability: how will this activity continue to address health
equality in the coming years?
Outcomes: were any outcome measures reported?
The ATS Innovation in Health Equality Highlight Book
includes abstracts from the following initiatives:
Clinically-focused applications:
• AWARD RECIPIENT: Implementation and Evaluation
of a Stock Albuterol Policy for a Low-Income Minority
School District
• Racial Disparities in Sepsis: The Role of Immunological
Heterogeneity
• Family Based Smoking Cessation Initiative
• Overcoming Barriers to Controlling Asthma and COPD in
an Urban Population
• Sleep Health and Knowledge in US Hispanics
Health equality policy, training, or career development applications:
• AWARD RECIPIENT: Collaboration with the Puerto Rican
Medical Community in HPS Education and Research
• Cultural Competency in End of Life Care: Design and
Implementation of a Pilot Curriculum
• Assessment of African ICU Resources for the Care of Critically
Ill Patients
• Race, Income and Education: Associations with Patient and
Family Ratings of End-of-Life Care and Communication
Provided by Physicians-in-Training
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Award Recipient:
Implementation and Evaluation of a Stock Albuterol Policy
for a Low-Income Minority School District
Authors
Lynn B. Gerald, PhD, MSPH; Jody Disney, PhD, RN, NCSN; Allison Thomas, BA, RN; Aimee Snyder, MPH; Holly Shiel,
BSN, RN, NCSN; Mark Irwin; Graciella Wilcox, MD; and Mark Brown, MD
Institution
University of Arizona and the Sunnyside Unified School District
Location
Tucson, Arizona
Description
The purpose of this program is to reduce asthma morbidity among low-income minority students by implementing a districtwide asthma policy to include standing orders for administration of stock albuterol.
BACKGROUND
Asthma affects approximately 9 million children in the United States. Adverse outcomes are disproportionately concentrated
among minority, low-income, and urban populations. In the Southwest, there is a unique population of urban, low income,
Hispanic children at high risk of poor asthma outcomes because they are more likely to be uninsured and live in poverty and
less likely to have a medical home. Data suggest that Hispanic children, as compared to white children, are 20% less likely
to use primary care and 65% more likely to use the ED for their health care needs. In the military health system, Hispanic
children are 40% more likely to have an asthma diagnosis, 40% more likely to experience a preventable asthma hospitalization,
25% more likely to experience an ED visit, and 25% less likely to have seen an asthma specialist in the past year than white
children. Hispanic children served by Medicaid are 40% less likely to report inhaled corticosteroid use than white children.
Schools are an ideal setting for asthma programs because children are geographically concentrated within them and schools are
strong advocates for children’s health. Our previous research has indicated that in low-income minority school districts, few
students with asthma (<15%) have quick relief medication available to them at school. One major reason for lack of access
to this medication at school is the inability of the family to afford a second inhaler for school. Therefore, the purpose of this
project is to reduce asthma related morbidity in students by implementing a district-wide asthma policy to include standing
orders for administration of stock albuterol in the Pima County, Arizona Sunnyside Unified School District (SUSD).
The Sunnyside Unified School District consists of 22 schools which serve pre-K through 12th graders. Eighty-seven percent
of the District’s population is Hispanic or Latino, 4.1% Native American, 2.4% black, 0.5% Asian, and the balance are
Caucasian. Of children less than twelve, 28.3% live in poverty with 57.5% living below 200% of the Federal Poverty Level.
Healthcare access is difficult in this community. The ratio of healthcare providers to the population is 7,057 to 1 for the
district compared with 812 to 1 for Pima County, AZ. In 2011, there were 1000 hospital admissions in this district’s children
and adolescents compared with 650 in the county. The leading diagnosis for hospital admission was “upper respiratory
conditions.”
Asthma is the major chronic illness diagnosis impacting Sunnyside students; ten percent of the 17,500 registered students
have asthma identified on their current or previous year school registration forms. A Registered Nurse (RN) is assigned to
each school in the district, and although SUSD nurses work assiduously as care coordinators to obtain Asthma Action Plans
(AAPs), medications, and to exchange information with PCPs, the socioeconomic realities of the district lead to significant
obstacles to having quick relief medication available to manage acute asthma episodes. We have created a district asthma policy
which seeks to provide nurses with the tools to intervene with stock albuterol for wheezing when personal medication is not
available. This program will allow each school to have an albuterol inhaler available for use in students with asthma.
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HIGHLIGHTS BOOK
METHODS & IMPLEMENTATION
A pre/post-implementation design is being used to evaluate the program, which was implemented at the beginning of the
2013-2014 school year. The population consists of all students identified with an asthma diagnosis in any of the 22 SUSD
schools. We expect that the stock albuterol and standing orders will reduce asthma related morbidity outcomes such as: 911
calls due to asthma, number of children sent home due to asthma, asthma related absences, and class time missed due to
time spent in the health office for asthma symptoms. We are also collecting data on the number of administrations of stock
albuterol versus personal supply. In-depth interviews are being conducted with a sample of the students who use the stock
inhaler as well as with his/her parents to determine reasons for use, perceptions of the program, and barriers to having a
personal inhaler at school. Each district nurse is also being interviewed to gather information on how the stock inhaler was
used as well as perceptions of the program.
Quantitative data for the study will be pulled from two existing databases housed in the district data systems. One database
(Campus) contains student demographic information, gender, ethnicity, grade, school, attendance, enrollment history. The
other system is the nurse’s electronic health record (HOW). Matriculation numbers will be used to link information from both
systems to describe each student with asthma and to pull needed variables for the study.
RESULTS & OUTCOMES
The policy was implemented at the beginning of the 2013-2014 school year and full outcome data/results are not yet available;
evaluation is ongoing and will be completed in the summer of 2014. Since initiation of the policy in August 2013, the stock
inhaler has been used 194 times.
CONCLUSIONS
Children spend much of their lives at school prior to age 18. In school districts with a significant number of students without
health insurance or in economic situations where families are unable to access adequate healthcare for their children, standing
orders for emergency medications are vital. Such programs can address some of the issues of health disparities in asthma
exacerbations. n
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Racial Disparities in Sepsis: The Role of Immunological
Heterogeneity
Authors
Andrew Goodwin, MD
Institution
Medical University of South Carolina
Location
Charleston, South Carolina
Description
This program is a clinical/translational research project focused on identifying genetic determinants of racial disparities in
sepsis. The results of this program will be used to identify new molecular pathways relevant to racial inequalities in sepsis
outcomes. Ultimately this research can lead to new therapeutic targets and further our progress toward personalized medicine
in the ICU.
BACKGROUND
Large epidemiologic studies have demonstrated that incidence rates and outcomes of sepsis are worse for blacks than whites
even after adjustment for socio-demographic factors. Immunologic genotype has been identified as a key determinant of a
person’s susceptibility to sepsis and its complications. Several studies have demonstrated immunological genetic heterogeneity
between blacks and whites, including in the innate immune system, but their role in disparities in sepsis outcomes remains
undefined. This program seeks to better understand the influence of candidate single nucleotide polymorphisms on sepsis
outcomes with a specific focus on racial heterogeneity.
METHODS & IMPLEMENTATION
We are prospectively collecting clinical and socio-demographic data, outcomes, and DNA/plasma samples from blacks and
whites admitted to the ICU with severe sepsis. DNA samples will be genotyped and plasma cytokine levels will be measured
and linked to a database of clinical data and outcomes. Genotypic association with outcomes will be determined with
appropriate statistical testing and mediation analysis will be used to determine the impact of cytokine levels on the identified
associations. We are prospectively collecting clinical and socio-demographic data, outcomes, and DNA/plasma samples from
blacks and whites admitted to the ICU with severe sepsis. DNA samples will be genotyped and plasma cytokine levels will be
measured and linked to a database of clinical data and outcomes. Genotypic association with outcomes will be determined
with appropriate statistical testing and mediation analysis will be used to determine the impact of cytokine levels on the
identified associations.
RESULTS & OUTCOMES
Sample and data collection is currently underway and is supported by a KL2 career development award through MUSC’s
CTSA. The results are too preliminary to present at this time. Relevant associations between genotype and outcome will be
explored in future research through existing collaborations with basic scientists.
CONCLUSIONS
While it is clear that many racial disparities in health have socio-demographic determinants, previous data suggests that
these do not fully explain racial differences in sepsis outcomes. This research program aims to identify additional biological
contributors to racial disparities in sepsis and ultimately may lead to improved, personalized treatment strategies. n
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HIGHLIGHTS BOOK
Family Based Smoking Cessation Initiative
Author
Avni Joshi, MD
Institution
Mayo Clinic
Location
Rochester, Minnesota
Description
We sought to improve the services offered during a clinic visit for a child who comes from a smoking household. We sought
to identify these children and then offered a consultation with a Tobacco Treatment Specialist (TTS). We also offered nicotine
replacement therapy (NRT) supplies free of cost for the initial few weeks to the family.
BACKGROUND
Healthy People 2020 has set the goal of a 10% reduction (from the current 50%) in the proportion of children and
adolescents exposed to second hand smoke (SHS). There are very few resources available to the pediatrician in their office
setting to help families quit smoking.
METHODS & IMPLEMENTATION
With support from Center for Innovation, we developed a unique family centered smoking cessation initiative in the outpatient
pediatric practice. SHS was identified by the Clinical Assistants (CA) during the rooming process. The providers would review
that information and then offer the option of a consultation with the Tobacco Treatment Specialist with nicotine replacement
supplies and consultation available free of cost and during the same visit.
RESULTS & OUTCOMES
Phase 1 of the pilot ran from April 1, 2013, through September 25, 2013. 413 patients were screened for SHS. The prevalence
of SHS was 20.2 %. Out of these 105 families, only 3 (2.8%) were referred to a TTS. We sought to identify barriers in uptake
of this service. Using input from the providers, patients, and clinical assistants, we developed choice tool for families to
empower themselves with the decision for smoking cessation. These choice tools were implemented in phase 2 of the pilot on
September 28, 2013. So far, 41 of 188 patients screened had SHS, of which 5 patients were referred to a TTS. The odds of
referral to TTS were significantly improved with the choices tool (OR: 4.7, 95% CI: 1.07-20.7, p=0.039).
CONCLUSIONS
The family based smoking cessation choice tool significantly improved the uptake for counseling and treatment. n
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HIGHLIGHTS BOOK
Overcoming Barriers to Controlling Asthma and COPD in
an Urban Population
Authors
Dina Khateeb, DO; Jaimie Shah, MD; and Mirela Feurdean, MD
Institution
Rutgers-NJMS
Location
Newark, New Jersey
Description
The authors of this application are members of the Rutgers-NJMS Internal Medicine Residency program. The goal of
the proposed program is to identify common barriers to the control of asthma and chronic obstructive pulmonary disease
(COPD) in the urban population of Newark, NJ, that obtains care in the resident internal medicine ambulatory clinic. Once
the barriers are identified, the ultimate goal is to implement an educational program as well as a patient assistance program
that could better control the symptoms in the asthma and COPD patients.
BACKGROUND
With the rise in current cost of health care, a larger emphasis on prevention of chronic conditions is placed on the shoulders
of primary care physicians. Both asthma and COPD are chronic conditions that burden the United States healthcare system
with cost through multiple emergency room (ER) visits and hospitalizations. Treatment plans should be tailored to prevent
exacerbations and hospitalizations. Education on proper inhaler use as well as access to the appropriate inhalers are very
important aspects of the treatment plan for prevention of exacerbations in asthmatics and patients with COPD.
METHODS & IMPLEMENTATION
Patients presenting to the resident internal medicine clinic will be screened for asthma or COPD by asking if they have been
prescribed an inhaler. The patients who have been prescribed an inhaler will be asked to voluntarily complete a questionnaire
to assess their knowledge of their disease process, appropriate inhaler use, and barriers to obtaining their inhalers. Our goal is
to obtain completed surveys from 100 consecutive patients. Once the surveys are completed, patients’ records will be reviewed
with regard to the number of ER presentations and hospitalizations they have had at University Hospital in 2013. As the
barriers to care are identified, a program will be developed to provide education and assistance with obtaining inhalers in our
population of asthma and COPD patients. A reassessment of the targeted patients’ ER visits and hospitalizations will be made
one year following the interventional program. An additional portion of this project includes assessing resident knowledge
of asthma and COPD classification, appropriate medication prescription, and knowledge of how to instruct patients on
appropriate inhaler use. We also aim to develop an educational program for the residents.
RESULTS & OUTCOMES
The authors hypothesize that in our urban patient population of asthma and COPD patients there are barriers to achieving
adequate control of symptoms. We believe these include: patient knowledge of their disease process, resident ability to educate
their patients on inhaler technique, patient knowledge of proper inhaler use, and patient access to appropriate therapies. Once
clearly identified, we can start programs to intervene with the ultimate goals of decreasing ER visits and hospitalizations, and
providing the internal medicine residents with the tools to provide better patient care.
CONCLUSIONS
This study is in progress. n
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HIGHLIGHTS BOOK
Sleep Health and Knowledge in US Hispanics
Authors
Jose S. Loredo, MD, MS, MPH; Wayne Bardwell, PhD; Laurence Palinkas, PhD; Sonia Ancoli-Israel, PhD; and Joel E.
Dimsdale, MD
Institution
University of California San Diego School of Medicine
Location
San Diego, California
Description
The Sleep Health and Knowledge in US Hispanics is a recently completed NIH sponsored research program with the aim to
explore disparities in sleep health, and the knowledge of sleep as a health factor, between Hispanics of Mexican descent and
non-Hispanic whites living in San Diego County.
The study had two arms: (1) an extensive telephone survey about sleep health and sleep health knowledge and (2) an
unattended home polysomnogram in a randomly selected subset of the population.
BACKGROUND
Sleep is emerging as an important health factor. Most of the sleep research has been done in whites and to some extent in
African Americans, but the current knowledge cannot be easily generalized to other minorities. Little is known about the sleep
health of Hispanics living in the US or in other parts of the world. Little is known about how sleep impacts the health of, or
the prevalence of common sleep disorders in, the largest minority group in the US. The literature suggests that the health of
Hispanics worsens with increasing acculturation and that due to the generally lower socioeconomic status of Hispanics, they
would be more likely to live in crowded and noisy environments that would not be optimal for good sleep quality. Poor sleep
quality and sleep disorders in Hispanics may contribute to increased cardiovascular morbidity, obesity, diabetes, and contribute
to health disparities. Improving sleep health and knowledge in Hispanics may lead to prevention and treatment of sleep
disorders and to significant gains in health and reduction of health disparities.
METHODS & IMPLEMENTATION
Subjects were recruited from throughout San Diego County by random digit dialing. Subjects >= 18 years old who could
participated in a telephone interview, who self-identify as Hispanics of Mexican descent or as non-Hispanic whites were
included in the project. A randomized procedure was used to choose only one subject per qualifying household. An
extensive telephone interview was administered by a culturally competent interviewer that included data on demographic,
anthropometric, general health, use of common substances, attitude to sleep, knowledge of sleep disorders, and diagnosis
of sleep disorders. Also included were validated instruments to measure sleep quality, sleepiness, depression, anxiety,
socioeconomic status and education, fatigue, quality of life, risk for obstructive sleep apnea, and acculturation. A randomly
recruited subsample was invited to participate in an unattended home polysomnogram. During home visitation, blood
pressure, height, and weight measurements were obtained, and the Berlin questionnaire was administered.
RESULTS & OUTCOMES
We recruited 3,667 subjects from January 2007 to September 2009 (1754 Hispanics and 1913 whites; male to female ratio 1 to
1.1). Fifty percent of Hispanics chose to participate in Spanish. Hispanics were significantly younger (41 ±15.6 vs. 54.9 ±17.1
years, p < 0.001) and although both groups were significantly overweight, Hispanics had a larger BMI (28.1 ± 6.5 vs. 27.2 ±
5.7, p < 0.001). The sleep quality of Hispanics and the degree of daytime sleepiness was not different from that of whites.
The prevalence of obstructive sleep apnea was also not different from that of whites. However, the prevalence of restless
legs syndrome was lower in Hispanics and increased with acculturation to the US lifestyle, being equal to that of whites for
the highly acculturated. This finding could not be explained by the data we collected. The prevalence of insomnia was also
significantly lower in Hispanics. There was a striking disparity in the sleep health knowledge of common sleep disorders,
effects of common substances on sleep, and the attitude to sleep between Hispanics and whites. For example while >90%
of whites had heard of and could identify the symptoms of obstructive sleep apnea, only about 40% of Hispanics could
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do the same. Similar results were noted for restless legs syndrome. The same pattern was also noted for Hispanics with low
acculturation versus high acculturation status. We continue to analyze these data.
CONCLUSIONS
The prevalence of restless legs syndrome and insomnia are lower in Hispanics. There was no difference in the prevalence of
obstructive sleep apnea between Hispanics and whites. Acculturation is associated with higher prevalence of RLS. There is a
wide disparity of sleep health knowledge in Hispanics that improves with acculturation and education
There is a need for further investigation of the sleep health and knowledge in US Hispanics that could lead to specific
interventions to improve sleep health. Currently it appears that improving education and acculturation may result in improved
sleep health in Hispanics. n
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Award Recipient:
Collaboration with the Puerto Rican Medical Community
in HPS Education and Research
Authors
Donna Appell, RN, and Heather Kirkwood
Institution
The Hermansky-Pudlak Syndrome Network, Inc.
Location
Oyster Bay, New York
Description
HPS is a rare disorder that causes pulmonary fibrosis 100 percent of the time in gene types 1 and 4. While it is very rare in the
general population, it is one of the most common genetic disorders among people of Puerto Rican heritage. In northwestern
Puerto Rico, HPS has a higher incidence rate than cystic fibrosis among northern Europeans.
The unmet need of patients affected by HPS in Puerto Rico is a profound healthcare disparity. The HPS Network’s
Colaborando para una Cura/Collaboration for the Cure program is designed to collaborate with the medical community in
Puerto Rico in the sharing of HPS education and research developments. This is accomplished via:
•Medical outreach events in Puerto Rico at clinics, hospitals, and medical schools
•An annual conference held in Puerto Rico
•Media outreach
•Bringing strategic physicians and researchers to the HPS Conference in New York so that they can interact and share
ideas with researchers in the mainland US
We hope this effort will translate into improved care of patients with HPS on the island of Puerto Rico as well as
collaborations that will speed our journey to treatments and, one day, a cure.
BACKGROUND
The HPS Network exists to support our members on our journey to find a cure. Our members experience health inequality
on a daily basis. The challenges faced have layered multidimensionality. HPS is a type of albinism that causes decreased visual
acuity (typically legal blindness) and a bleeding disorder. HPS type 1 (the most common type) and 4 cause pulmonary fibrosis,
usually in the fourth decade of life. Legal blindness creates additional challenges for patients with HPS as they navigate and
advocate for their needs in the medical system. The genetic founder’s effect in HPS has created a significantly increased
incidence among the Puerto Rican population. HPS1 is carried by one in twenty-one in the northwestern quadrant of the
island. HPS3 developed from a mutation that occurred in the center of the island. With this prevalence, our organization’s
demographics are largely Puerto Rican. This brings many challenges, among them: issues of language barriers, financial
burdens, as well as cultural experiences and attitudes regarding health and research. The HPS Network has spent 21 years
striving to increase the quality of life of our members by reducing the obstacles and barriers to expert care and raising the
standard of care. We have developed many activities to reach this goal. This application will highlight only one of them. (To
get a real-life glimpse of this program, as well as the HPS Network, in action, we invite you to watch the film RARE. RARE
is a documentary created by the Stanford University Medical School’s Center for Bioethics. It shows the HPS Network over
several years through a phase III clinical trial. To view the trailer and for more information please visit www.rarefilm.org)
METHODS & IMPLEMENTATION
Below is a summary of the past activities of our program. We are currently working on this year’s outreach efforts and the
HPS Puerto Rico conference. They will both take place in August. This year’s efforts will very much mirror, but also expand
upon, our past program activities.
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Puerto Rico Conference: for the past eight years we have held a patient and healthcare provider conference in Puerto Rico,
usually in August. Attendance has averaged about 400. Because most adults with HPS cannot drive, we have contracted school
buses to pick up attendees so they are able to attend. The conference programs typically include expert speakers and among
them have been:
•Dr. Enid Rivera – Hematology
•Dr. Simon Carlo – Genetics
•Dr. Rullan – Dermatology
•Dr. Del Valle – Gastroenterology
•Dr. Natalion Izquierdo – Ophthalmology
•Carmen Camacho – Social Work
•Dr. Angel Rivera from the Oficina del Procurador del Paciente – Patient’s rights
•Dr. Melba Esquilin – Dentist
Carmen Camacho, an adult with HPS as well as a licensed mental health and crisis social worker, runs a weekly phone-in
support group for parents of children with HPS in Spanish. She also helps prepare our members for the process of lung
transplantation. She has presented on this topic to patients and medical professionals at past conferences and has also written
a guide to preparing for lung transplantation for patients with HPS in Spanish.
Ms. Camacho also teaches our Presentation in a Bag, an innovative outreach tool, to members in Spanish. Presentation in a
Bag is a kit that those with HPS can use to speak to civic or medical organizations about HPS for public awareness, education,
or fundraising. It has a ready-made PowerPoint, large print note cards, brochures and public speaking tips. It is a way to
empower patients to become their own advocates.
Our annual conference also gives CMEs to physicians.
Outreach week activities: During outreach week we travel as a team of HPS patients, as well as nurses and physicians, to give
informational talks or Grand Rounds at various clinics, hospitals, and medical schools around the island. Recently we have
presented at:
•Hospital Imigrante in San Sebastian
•CDT San Sebastian
•Urgent care center in Aguadilla
•Bella Vista Hospital
•Parea Hospital in Mayaguez
•CDT Lares Hospital – Conference for nurses
•San Juan City Hospital
•San Juan Bautista School of Medicine
•Met with Dr. Luis Nieves, President of the Puerto Rican Pulmonary Society
We also created materials and financially supported a team of patients with HPS in Puerto Rico to attend an annual conference
of pediatricians in Puerto Rico.
Media outreach: While in Puerto Rico, we team up with families affected by HPS in Puerto Rico to do media outreach. This
effort is designed to increase awareness of the syndrome on the island as well as promote the HPS Puerto Rico conference to
patients and healthcare providers alike. Recent media outlets have included:
•TV Show – En Cuerpo y Alma – Dr. Izquierdo
•WAPA TV, TV Show “Ellas y…”
•Four radio station interviews and call-in shows
Connecting Puerto Rican physicians with researchers on the mainland US: This year the HPS Network is giving three $500
travel awards to pulmonary fellows in Puerto Rico that plan to practice in Puerto Rico so that they may attend the American
Thoracic Society’s International Conference.
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We sponsored physicians and researchers from Puerto Rico to attend the HPS Conference in New York this March. At
this conference our researchers from the NIH as well as from around the United States presented their latest findings and
discussed best practices for the standard of care of patients with HPS. This year our guests were:
•Dr. Hector M. Mayol, an ophthalmologist from Puerto Rico and head of the Ophthalmology Society of Puerto Rico
•Dr. Julie Dutil, PhD and assistant professor of biochemistry at the Ponce School of Medicine
•Dr. Jose Nieves, a first-year pulmonary fellow at San Juan Veterans Affairs Medical Center
RESULTS & OUTCOMES
The following are results or outcomes we have seen from our previous efforts:
•“High Incidence of Gastrointestinal Problems in Puerto Rican Male Patients with Hermansky-Pudlak Syndrome”
•“Awareness of Prolonged Menstrual Bleeding of Women with Hermansky-Pudlak Syndrome in Puerto Rico”
Both papers and posters were written by students at the Department of Biomedical Sciences and Research, San Juan Bautista
School of Medicine, Caguas, Puerto Rico. They were able to interview patients for their project at the HPS Network Puerto
Rico Conference. The students went on to present their posters at:
Latino Medical Student Association
6th Annual LMSA SE Regional Conference
Hablamos Espanol: Understanding the Diversity Behind One Language
Chapel Hill, North Carolina
Saturday, February 8th, 2014
The HPS Network provided sponsorship for this opportunity.
HPS patients volunteered blood samples at our last HPS Puerto Rico Conference for a study being conducted by Ms. Yeidyly
Vergne:
“Prevalence of Pulmonary Fibrosis in Puerto Rico 2000-2010: Phenotype correlations”
Ponce School of Medicine and Health Sciences
Protocol No. 130806- JSC
Advisor - Dr. Santiago-Cornier
We also sponsored Ms. Vergne’s poster by the same name at the International Conference on Epidemiology and Evolutionary
genetics, August 21-23, 2013, Holiday Inn Orlando International Airport, Orlando, FL, USA.
HPS Puerto Rico Conferences have been a tool to make patients as well as physicians aware of ongoing research and
opportunities to participate. In the past there have been opportunities to participate in drug trials. Basic research on the natural
history of HPS continues.
Dr. Bernadette Gochuico, a pulmonologist at the NIH studying HPS, was invited to address the Puerto Rican Pulmonary
Society about her research in November. This opportunity came about after our meeting with Dr. Nieves in Puerto Rico.
Lung transplants are not available in Puerto Rico, thus anyone on the island wishing to pursue this option must relocate to the
mainland United States. Our transplant preparation book and lectures at the HPS Conference have resulted in four families
so far relocating from the island to a lung transplant center in the US. Three additional families are currently in the process of
relocating.
CONCLUSIONS
Colaborando para una Cura/Collaboration for the Cure is a vital program to the long-term care and treatment of patients
in Puerto Rico affected by Hermansky-Pudlak Syndrome, but also for those with the syndrome throughout the world.
When researching a rare disease, every patient matters. For the patients, every doctor with knowledge about HPS matters.
Collaborations with the medical community make research possible for HPS (a disease which is home to a large founder’s
effect), and uncovers clues for other fibrotic lung diseases. n
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Cultural Competency in End of Life Care: Design and
Implementation of a Pilot Curriculum
Authors
Amy Chi, MD; Elisabeth Bennett, PhD; Rebecca Blanchard
Institution
Tufts Medical Center
Location
Boston, Massachusetts
Description
We developed a four week cultural competency in end of life care curriculum for medical students rotating in the medical
intensive care unit. The intent of the program was to (1) increase awareness of cultural issues surrounding end of life care,
(2) improve comfort in having these conversations with families of different ethnic and racial backgrounds, and (3) build
knowledge of cross-cultural communication techniques. Components of the curriculum included didactics on cultural issues
surrounding end of life care, case-based online modules highlighting cultural complexities with discussing end of life care,
small group discussions, and an observation exercise. The observation exercise included observing a family meeting led by a
critical care attending and then completing an observation tool about the family meeting. The reflections from the observation
tool were discussed with the critical care attending and in a follow-up small group session.
BACKGROUND
In the US, nearly twenty percent of deaths occur in the ICU (Angus, CCM 2004). Previous studies have shown that there
are racial and ethnic differences in the utilization of critical care services at the end of life. Additional studies have shown
that non-English speaking populations are at a higher risk of receiving less medical information about loved ones in the ICU
and less emotional support from physicians. (Muni, Chest, 2011). Provider behavior may contribute to these racial/ethnic
disparities in care. We have developed and implemented a curriculum with medical students rotating in the intensive care unit
to address cultural competency in end of life care with families of different racial/ethnic backgrounds.
METHODS & IMPLEMENTATION
Students were oriented to the four-week end of life care (EOLC) curriculum by ICU site directors who provided an overview
of cultural competency. Using the LEARN framework (Berlin, West J Med 1983), they completed online cultural competency
case modules. Students also observed a family EOLC discussion and completed an observation tool based on the LEARN
framework to foster reflection. Debriefing in small groups occurred at the end of the rotation. Surveys to assess health belief
attitudes, knowledge and comfort were administered at the beginning and end of the curriculum along with rotation-end
evaluations.
RESULTS & OUTCOMES
69 students participated from Jan 2012-October 2012. 35 students completed the curriculum evaluations which indicated
students’ comfort with concepts in cultural competency increased (p<0.001). They considered the observation experience
and the end of rotation debriefing to be the most effective components of the curriculum. Validated health belief attitude
surveys and knowledge surveys did not show differences in the pre- and post- curriculum survey, possibly due to instrument
sensitivity.
CONCLUSIONS
Although no change was measured between the pre- and post- health belief attitudes or knowledge surveys, the increased
comfort with cultural competency reported demonstrates the curriculum was effective for promoting cultural competency.
Experiential exercises that include observation of difficult conversation and reflection based on LEARN are integral for the
curriculum effectiveness. Given the low cost and defined time commitment, we believe this curriculum is a feasible option for
teaching cultural competence in EOLC in the ICU and has potential to be expended to medical residents, fellows and faculty.
Knowledge assessment surveys lacking sensitivity will be revised for future implementations. n
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2014 ATS INNOVATIONS IN HEALTH EQUALITY AWARD
HIGHLIGHTS BOOK
Assessment of African ICU Resources for the Care of
Critically Ill Patients
Authors
Aleksandra Leligdowicz, M, PhD; Neill Adhikari,MOCM, MSc, ACART (Acute Care for Africa Research and Training Network)
Institution
University of Toronto
Location
Toronto, Ontario
Description
Our team includes intensivists from the African (ACART: Acute Care for Africa Research and Training Network, a newly
formed organization) and the North American continents, a statistician from Sunnybrook Hospital in Toronto, and is
supported by InFACT (International Forum for Acute Care Trialists). Together, we developed a cross-sectional selfadministered web-based survey to assess resources available for providing care to critically ill patients. This work will form the
platform for longitudinal online data collection for an accurate understanding of resource availability in low-income countries.
Our aim is to quantify existing resources with the goal to improve infrastructure for provision of basic health care in critical
illness in the least developed parts of the world.
BACKGROUND
Access to critical care is a crucial part of a functioning healthcare system. In resource-limited settings, the lack of data on
where and how critically ill children and adults are managed is one of the obstacles to determining the burden of critical
illness. We performed a systematic review (manuscript in progress) that confirmed the significant paucity of data in this field
in low-income countries. Understanding the available resources could allow for accurate data capture on the global burden of
critical illness. It would help distribute resources and knowledge to areas where it is most lacking and where it would offer the
greatest potential benefit.
We designed and optimized a web-based, self-administered questionnaire with the primary objective of describing resource
availability for management of critically ill patients in resource-limited settings throughout Africa. By surveying health care
professionals providing care to critically ill patients, we will collect information about facilities, equipment, management
options, diagnostic tools, and skilled personnel.
METHODS & IMPLEMENTATION
We followed standard methods to develop this survey (Burns KE, et al., CMAJ 2008). Item generation followed from synthesis
of previous survey instruments published in peer-reviewed journals, available from websites (WHO Service Availability and
Readiness Assessment tool; European Society of Intensive Care Medicine (ESICM): Toward a global understanding of critical
care organization and management), and in development (personal communication, Dr. Charles Gomersall). Following item
reduction involving 6 ACART members, we created a draft questionnaire and sent it to 7 critical care providers working in
low-income countries for assessment of clinical sensibility and test-retest reliability (2 survey administrations 2 weeks apart).
The final version of the survey will be used for data collection over a two-month period (July-August 2014). The survey will
be distributed using email and responses can be provided using one of three methods: (1) response directly within email, (2)
response with an attached Word document, (3) online survey tool (SurveyMonkey).
The survey will be administered in three phases: a pilot phase to optimize the survey tool (completed), a detailed focus on
two African nations (Rwanda and Malawi, in progress), and lastly, throughout Africa. It will be distributed electronically to
the health care provider (physician, nurse, administrator, or other) most responsible for the management of hospital locations
where critically ill patients are cared for in their hospital. Respondents in the two target countries will be identified from
a systematic review of peer-reviewed manuscripts focusing on critical care resource availability (manuscript in progress),
personal contacts, and supplemented through “snowball sampling”.
The study was approved by the Research Ethics Board at the Sunnybrook Health Sciences Centre (Toronto, Canada).
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2014 ATS INNOVATIONS IN HEALTH EQUALITY AWARD
HIGHLIGHTS BOOK
RESULTS & OUTCOMES
Our pilot study showed agreement among respondents that the questionnaire identified important issues, was easily
understood, contained appropriate questions, and is likely to identify capacity to provide care for critically ill children and
adults in low-income settings.
Pilot survey responders were from 7 major cities in Cambodia, Malawi, Nepal, Nigeria, Uganda, Zambia, and Zimbabwe and
included six physicians and one senior nurse administrator.
The hospital facilities were all academic, government-funded national referral hospitals, with 500-2000 hospital beds. The
mean number of ICU beds per hospital was 8.7 (range 4-13) and in majority of the hospitals, the beds were occupied 75100% of the time. The mean number of mechanical ventilators was 6 (range 3-10). All of the hospitals provided care to adults
and 3/7 locations provided care to neonates and children.
Resource availability was variable among the sites:
•Items that were always/often available included: supplemental oxygen (by pipe, cylinder, or O2 concentrator), mechanical
ventilation, pulse oximetry, crystalloids, antibiotics, sedation, whole blood, a microbiology lab, non-portable XR machine,
and CT scan.
•Items that were sometimes available included: non-invasive ventilation, dialysis, infusion pumps, platelets, plasma, arterial
blood gas analysis, portable XR machine, and portable US machine.
•Items that were rarely/never available included: central venous catheters, single or negative pressure rooms, and MRI scan.
Human resource availability varied among the sites as well. The most responsible health care providers included specialists
in anesthesia (6/7 hospitals), internal medicine (6/7 hospitals), surgery (5/7 hospitals), intensive care (3/7 hospitals), and
pediatrics (2/7 hospitals). None of the sites had access to a respiratory therapist. Six of the seven sites were involved in
research (case reports, case series, and cohort studies).
CONCLUSIONS
The pilot study confirmed that the survey is an important mechanism to obtain information on access to resources for
managing critically ill patients in low-income countries. It proved that an online method is feasible, reliable, and associates with
no cost.
We believe the final survey results will confirm that, similar to data from high and middle-income countries, there will be
significant disparity within and between countries throughout Africa. This important work will help clinicians understand
how critical care is currently practiced in low-income countries, what we can learn from it, and how we can contribute to
improving it. n
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Race, Income and Education: Associations with Patient and
Family Ratings of End-of-Life Care and Communication
Provided by Physicians-in-Training
Authors
Ann C. Long, MD; Ruth A. Engelberg, PhD; Lois Downey, MA; Erin K. Kross, MD; Lynn F. Reinke, PhD, ARNP; Laura
Cecere Feemster, MD ; Danae Dotolo, MSW; Dee W. Ford, MD, MSCR; Anthony L. Back, MD; and J. Randall Curtis, MD, MPH.
Institution
University of Washington
Location
Seattle, Washington
Description
The University of Washington End-of-Life Care Research Program is an internationally known research center in palliative
and end-of-life care that has been in existence for over 10 years and has contributed to the science of measuring and
improving the quality of palliative and end-of-life care. The Program is housed in a 1500 square-foot suite of offices on the
Harborview Medical Center campus of the University of Washington. The Program is led by Dr. J. Randall Curtis and Dr.
Ruth A. Engelberg. The End-of-Life Care Research Program is a resource in a number of important areas for clinical and
health services researchers.
BACKGROUND
The perception of racial discrimination in healthcare settings has been associated with lower patient ratings of healthcare
quality as well as lower ratings of provider communication. Socioeconomic status has also been associated with disparities in
physician-patient communication and may mediate associations by race and ethnicity. While disparities have been identified
within a broader healthcare context, limited data are available to describe the relationship between patient and family member
race or socioeconomic status and ratings of end-of-life care and communication. Quality communication is an essential
component of excellent end-of-life care, and efforts to enhance training in this area will require an increased understanding of
influential factors that may help guide and refine outcome measures and support interventions to improve end-of-life care and
communication.
METHODS & IMPLEMENTATION
As a component of a randomized trial evaluating a program designed to improve clinician communication about end-of-life
care, patients and patients’ families completed pre-intervention survey data regarding care and communication provided by
internal medicine residents and medical subspecialty fellows. We examined associations between patient and family race or
socioeconomic status and ratings they gave trainees on two questionnaires: the Quality of End-of-Life Care (QEOLC) and
Quality of Communication (QOC).
RESULTS & OUTCOMES
Patients from racial/ethnic minority groups, patients with lower income, and patients with lower educational attainment gave
trainees higher ratings on the end-of-life care subscale of the QOC (QOCeol). In path models, patient educational attainment
and income had a direct effect on outcomes, while race/ethnicity did not. Lower family educational attainment was also
associated with higher trainee ratings on the QOCeol, while family non-white race was associated with lower trainee ratings on
the QEOLC and general subscale of the QOC.
CONCLUSIONS
Although we found all three of our predictors of interest – race/ethnicity, income, and education – to have associations with
patient ratings of care and communication that specifically addressed end-of-life issues, we found that these associations may
be related more to differences in reports of whether various aspects of communication about end-of-life care occurred, as
opposed to the conduct of poor quality communication. We also present evidence that some of the identified associations
between race/ethnicity and ratings of communication may be mediated by income and education, which suggests the
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2014 ATS INNOVATIONS IN HEALTH EQUALITY AWARD
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importance of including these variables in future studies of racial disparities in patient-physician communication about
palliative and end-of-life care. Finally, we found that the associations between race/ethnicity or socioeconomic status and
ratings of end-of-life care seemed to be different for patients compared to family members and these differences warrant
further investigation. Our results provide interesting insights regarding care delivered by trainees and this complex topic
warrants further investigation to better understand how these factors should be considered when developing outcome
measures as well as interventions to improve the quality of end-of-life care. n
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Health Equality Policy, Training, or Career Development
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