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Study Information

dbGaP Study Accession: phs003504

NIH Institute/Center: NIMHD

RADx Data Program: RADx-UP

DOI: 10.60773/5aar-0w08

Release Date: 03/04/2024

Study Description: In Puerto Rico, the COVID-19 burden in the elderly population is significant. 23% of the confirmed COVID-19 cases and 75% of the deaths have been reported in this group with a low testing rate (3.4 per 100,000) in those > 65 years. The knowledge, beliefs, attitudes, and practices about the risk of infection from COVID-19, symptoms, testing and vaccination, remain a public health concern in Puerto Rico. In 2019, 21.3% of the population living in PR were elderly (> 65 years) with 43.3% living in poverty, were isolated, and medically vulnerable due to their chronic diseases. Isolation for elders has been exacerbated due to the high migration rates of their family members that culturally cared and lookout for them. The Puerto Rico Community Action Research and Engagement (PR-CARE) initiative aimed to focus on the elderly communities in PR who are disadvantaged by geography, sexual and/or gender identification, homelessness and/or income to identify how multiple factors serve to disadvantage this at-risk population in COVID-19 testing and vaccine uptake. PR-CARE sought to identify factors that shape how vulnerable elderly populations in PR recognize and address issues that impact their health and wellness, using the lens of social, ethical, behavioral, structural, historical, and policy issues. The well-established community partner network, using a mixed methods research strategy, had the goal of examining how social determinants of health, in addition to critical policy and environmental factors, address testing and vaccine access and uptake in elderly (> 65 years old) populations in Puerto Rico who suffer from high levels of social vulnerability (i.e., homeless), who were geographically isolated (i.e., living in isolated or rural areas), living in poverty, and gender or sexual diverse (i.e., L.G.B.T.T.Q.I.A.+). In close partnership with three community-based organizations (Coai, Inc. Coalicion de Coaliciones and OSAN) and community promoters or community leaders, this project committed to promoting appropriate access to research findings for the advancement of scientific knowledge. The strategies were guided by four theoretical frameworks: Community Engagement Continuum, Intersectionality-Informed Approach, Andersen's Behavioral Model of Health, and Historical Trauma. These models enable portraying a critical array of multi-domain determinants of health to understand health disparities and healthcare utilization, specifically COVID-19 testing, and vaccinations, in vulnerable elderly communities. Following an explanatory sequential mixed-method approach of surveys, policy review and interviews, PR-CARE aimed to improve the understanding of factors that shape how policy makers, decision makers, and communities make decisions related to health behaviors, especially those related to COVID-19 testing and vaccination uptake. Aims were: 1) assess federal and Puerto Rico Commonwealth policy implications on COVID-19 testing in low-resourced and socially vulnerable elderly in Puerto Rico; 2) examine individual and social determinants of health that influence the uptake of the COVID-19 diagnostics among low-resourced and socially vulnerable elderly in Puerto Rico and 3) combine results from the systematic policy review and key informants (Aim 1: qualitative) and elderly individuals (Aim 2: quantitative and qualitative) to identify challenges, barriers and effective strategies and language to support and improve COVID-19 testing and other related health outcomes in this vulnerable population. The community engagement research that comprised PR-CARE worked to expand the scope, reach, access to and uptake of COVID-19 testing for vulnerable elderly populations in Puerto Rico, focusing on the elderly communities in PR who were disadvantaged by geography, sexual and/or gender identification, homelessness and/or income. Concurrently, it identified and created permanent pathways in health policy that increase the availability of health services for vulnerable populations, promoting health equity using the lens of social, ethical, and behavioral implications.

Updated Date: 03/04/2024

Principal Investigator: Cesareo, Marizaida

Has Data Files: Yes

Study Domain: Community Outreach Programs; Social Determinants of Health; Testing Rate or Uptake; Vaccination Rate or Uptake; Virological Testing

Data Collection Method: Interview or Focus Group; Survey

Keywords: Environmental Impacts; Impact of Policy; Individual-Level Data

Study Design: Longitudinal Cohort

Multi-Center Study: No

Data Types: Behavioral; Clinical; Cognitive; Family History; Immunological; Psychological; Questionnaire or Survey; Social

Study Start Date: 12/30/2021

Study End Date: 11/30/2022

Species: Human

Estimated Cohort Size: 900

Study Population Focus: Homeless or Unhoused Populations; Lower Socioeconomic Status (SES) Populations; Older Adults or Elderly; Rural Communities; Sexual or Gender Minorities

Acknowledgement Statement: This study was supported through funding, 1U01MD017426-01, for the National Institute on Minority Health and Health Disparities (NIMHD) as part of the RADx-UP program. Support was provided by NIH/NIMHD - Puerto Rico Community Action Research and Engagement (PR-CARE) to Eliminate Disparities in Diagnostic of COVID-19 among Rural Undeserved and Vulnerable Populations (U01MD01742), NIH/NIGMS - Hispanic Alliance for Clinical and Translational Research (1U54GM133807), & Nexos Group, Inc. Approved users should acknowledge the provision of data access by dbGaP for accession phs003504.v1.p1, and the NIH RADx Data Hub. Approved users should also acknowledge the specific version(s) of the dataset(s) obtained from the NIH RADx Data Hub.

Funding Opportunity Announcement (FOA) Number: RFA-OD-21-008

NIH Grant or Contract Number(s): 1U01MD017426-01

Consent/Data Use Limitations: General Research Use

Variable Information
Total Variables: 360
Study Variables Information Table
Variable Name
Label
nih_record_idUser ID
nih_raceWhat is your race?
nih_ethnicityAre you of Hispanic or Latino origin? May include Spanish origin.
nih_ageWhat is your age?
nih_sexWhat is your biological sex assigned at birth?
nih_educationWhat is the highest level of education you have achieved outside or in the United States?
nih_zipWhat is your zip code?
nih_employmentPlease specify your employment status.
nih_insuranceWhat kind of health insurance do you have?
nih_disabilityDo you have a disability, including serious physical or mental conditions, that interfere with your ability to carry out daily activities?
nih_deafAre you deaf or do you have serious difficulty hearing?
nih_blindAre you blind or do you have serious difficulty seeing, even when wearing glasses?
nih_memoryBecause of a physical, mental, or emotional condition, do you have serious difficulty concentrating, remembering, or making decisions?
nih_walk_climbDo you have serious difficulty walking or climbing stairs?
nih_dress_batheDo you have difficulty dressing or bathing?
nih_errandBecause of a physical, mental, or emotional condition, do you have difficulty doing errands alone such as visiting a doctor's office or shopping?
nih_vape_freqVaping Frequency: Do you now use electronic cigarettes every day, some days, rarely, or not at all?
nih_cig_smoke_freqNicotine Frequency: Do you now smoke cigarettes?
nih_smoking_ynDo you use any tobacco/nicotine products (including cigarettes, cigars, e-cigarettes, etc)?
nih_history_smokingHistory of Smoking
nih_alcohol_ynAlcohol use (Yes or No)
nih_lifetime_use_alcoholIn your entire life, have you had at least 1 drink of any kind of alcohol, not counting small tastes or sips? (Yes or No)
nih_alcohol_frequencyHow often did you have a drink containing alcohol ?
nih_asthmaAsthma
nih_cancer_past_yrCancer diagnosis and/or treatment within the past 12 months
nih_cardiovascular_diseaseCardiovascular disease
nih_chronic_kidney_diseaseChronic kidney disease
nih_diabetesDiabetes
nih_hypertensionHypertension
nih_mental_health_disorderMental health disorder
nih_sickle_cell_diseaseSickle cell disease
nih_immunocompromisedImmunocompromised condition
nih_autoimmAutoimmune disease
nih_copdChronic obstructive pulmonary disease (COPD)
nih_chronic_lungOther chronic lung disease
nih_depressionDepression
nih_alc_sub_abuseAlcohol or substance use disorder
nih_iv_drug_useIntravenous drug use
nih_other_chronic_condOther chronic condition
nih_coughCough
nih_fever_chillsFever or Chills
nih_diff_breathShortness of breath or difficulty breathing
nih_headacheHeadache
nih_muscle_acheMuscle ache
nih_olfactoryNew loss of taste or smell
nih_fatigueExcessive fatigue
nih_nausea_vomiting_diarrheaNausea, vomiting, or diarrhea
nih_abdom_painAbdominal pain
nih_skin_rashSkin rash
nih_throat_congestion_noseSore throat, congestion or runny nose
nih_other_sympOther
nih_health_statusWould you say that (your) health in general is excellent, very good, good, fair, or poor?
nih_heightWhat is your height in inches?
nih_weightWhat is your weight in pounds?
age_yrsAge For babies less than 1 year old, do not write the age in months. Write 0 as the age. (Years)
bio_sex_birth_2What was your sex assigned at birth on your birth certificate?
cc_asthma_2Asthma
cc_asud_2Alcohol or substance use disorder
cc_autoimm_2Autoimmune disease
cc_cancer_2Cancer diagnosis and/or treatment within the past 12 months
cc_chronickd_2Chronic kidney disease (CKD)
cc_clung_2Other chronic lung disease
cc_copd_2Chronic obstructive pulmonary disease (COPD)
cc_cvd_2Cardiovascular disease (CVD or heart disease)
cc_depression_2Depression
cc_diabetes_2Diabetes
cc_hypertension_2Hypertension (HTN, high blood pressure)
cc_imm_2Immunocompromised condition
cc_intrav_2Intravenous drug use
cc_otherchroniccond_2Other chronic condition
cc_othermh_2Other mental health disorder
cc_sickle_2Sickle Cell Anemia
covid_abpain_2Abdominal Pain
covid_cough_2Cough
covid_diffbreath_2Shortness of breath or difficulty breathing
covid_fever_2Fever or chills
covid_headache_2Headache
covid_myalgia_2Muscle or body aches
covid_nausea_2Feeling sick to your stomach or vomiting, diarrhea
covid_olfactory_2New loss of taste or smell
covid_other_2Other
covid_runnynose_2Sore throat, congestion or runny nose
covid_skinrash_2Skin Rash
current_employment_statusWe would like to know about what you do -- are you working now, looking for work, retired, keeping house, a student, or something else?
disability_blind_2Are you blind, or do you have serious difficulty seeing, even when wearing glasses?
disability_deaf_2Are you deaf, or do you have serious difficulty hearing?
disability_decisions_2Because of a physical, mental, or emotional condition, do you have serious difficulty concentrating, remembering, or making decisions? (5 years of age or older)
disability_dress_2Do you have difficulty dressing or bathing? (5 years of age or older)
disability_errands_2Because of a physical, mental, or emotional condition, do you have difficulty doing errands alone such as visiting a doctor's office or shopping? (15 years of age or older)
disability_walking_2Do you have serious difficulty walking or climbing stairs? (5 years of age or older)
hi_coverage_typeWhat is the primary kind of health insurance or health care plan that you have now? (Exclude plans that pay for only one type of Service (such as, nursing home care, accidents, family planning, or dental care) and plans that only provide extra cash when hospitalized. )
lifetime_use_alcoholIn your entire life, have you had at least 1 drink of any kind of alcohol, not counting small tastes or sips?
race_ethn_hispanicAre you of Hispanic, Latino, or Spanish origin?
self_reported_disabilityDo you have a disability that interferes with your ability to carry out daily activities? Examples of daily activities include walking, climbing stairs, shopping, balancing a checkbook, bathing or dressing.
self_reported_height_feetFeet
self_reported_height_inchesInches
self_reported_weight_kgsHow much do you weigh without clothes or shoes? If you are currently pregnant, how much did you weigh before your pregnancy?
self_reported_weight_lbsHow much do you weigh without clothes or shoes? If you are currently pregnant, how much did you weigh before your pregnancy?
smoker_cur_stat_2Do you now smoke cigarettes?
vaper_cur_statDo you now use electronic cigarettes every day, some days, rarely, or not at all?
zip_codeZip Code
alcohol_date_mdy-
alcohol_daysperweek-
alcohol_drinksperday-
cocaine_use_2-
consentdt_mdy-
consent_given-
consent_ident-
consent_recontact-
covid_barrier___1-
covid_barrier___2-
covid_barrier___3-
covid_barrier___4-
covid_barrier___5-
covid_barrier___6-
covid_barrier___7-
covid_barrier___8-
covid_barrier___9-
covid_barrier___98-
covid_barrier___99-
covid_fatique_2-
covid_iso_chal___1-
covid_iso_chal___2-
covid_iso_chal___3-
covid_iso_chal___4-
covid_iso_chal___5-
covid_iso_chal___6-
covid_iso_chal___7-
covid_iso_chal___8-
covid_iso_chal___9-
covid_iso_chal___98-
covid_iso_chal___99-
covid_pandemic_challenges_abod_2-
covid_pandemic_challenges_food_2-
covid_pandemic_challenges_wate_2-
covid_pto-
covid_risk-
covid_test_approval-
covid_test_collect_datetime-
covid_test_collection_setting-
covid_test_date_mdy-
covid_tested_30-
covid_test_performed_location-
covid_test_result-
covid_test_result_datetime-
covid_test_result_sent_datetime-
covid_test_specimen_collector-
covid_test_specimen_type-
covid_test_study_setting-
covid_test_tar_dis_stat_2___1-
covid_test_tar_dis_stat_2___2-
covid_test_tar_dis_stat_2___3-
covid_test_tar_dis_stat_2___4-
covid_test_tar_dis_stat_2___5-
covid_test_tar_dis_stat_2___6-
covid_test_tar_dis_stat_2___9-
covid_test_type-
covid_tst_reas-
covid_vaccine-
cov_pan_chal_hlth_2-
cov_pan_chal_med_2-
cov_pan_chlng_trans_2-
cov_tst_mthd_2-
disability_date_mdy-
drg_date_mdy-
ecstasy_use-
edu_years_of_school-
employed_ew-
employed_healthcare_2-
family_income-
fi_afford_balanced_meals-
fi_change_diet-
fi_change_diet_frequency-
fi_eat_less-
fi_food_money_frequency-
fi_high_quality_2-
fi_hungry-
flu_vaccinehistind_2-
flu_vaccine_season_3-
gender_identity_term_2-
hallu_use_2-
heroin_use_2-
hi_loss_covid-
hlthstat_date_mdy-
household_congregate_3-
household_famgen_3-
household_homeless-
housing_concerns-
housing_date_mdy-
iden_date_mdy-
idrug_use_2-
index-
isolate_maintain_job-
jobloss_covid19_2-
language_english-
language_home___1-
language_home___2-
language_home___3-
language_home___4-
language_home___5-
language_home___6-
language_home___7-
language_home___8-
language_home___90-
mari_use_2-
mari_use_smk_2-
mari_use_vap_2-
med_date_mdy-
med_hx_date_mdy-
meth_use_2-
missed_procedure_2-
nih_appr-
pdrg_use_2-
positivemonth_covidtest_2-
positiveyear_covidtest_3-
quarantine_maintain_job-
race_ethn_asian_detail_3___1-
race_ethn_asian_detail_3___2-
race_ethn_asian_detail_3___3-
race_ethn_asian_detail_3___4-
race_ethn_asian_detail_3___5-
race_ethn_asian_detail_3___99-
race_ethn_hispanic_detail_2___1-
race_ethn_hispanic_detail_2___2-
race_ethn_hispanic_detail_2___3-
race_ethn_hispanic_detail_2___4-
race_ethn_hispanic_detail_2___5-
race_ethn_hispanic_detail_2___6-
race_ethn_hispanic_detail_2___7-
race_ethn_hispanic_detail_2___99-
race_ethn_islander_detail_2___1-
race_ethn_islander_detail_2___10-
race_ethn_islander_detail_2___11-
race_ethn_islander_detail_2___12-
race_ethn_islander_detail_2___13-
race_ethn_islander_detail_2___14-
race_ethn_islander_detail_2___2-
race_ethn_islander_detail_2___3-
race_ethn_islander_detail_2___4-
race_ethn_islander_detail_2___5-
race_ethn_islander_detail_2___6-
race_ethn_islander_detail_2___7-
race_ethn_islander_detail_2___8-
race_ethn_islander_detail_2___9-
race_ethn_islander_detail_2___99-
race_ethn_race___1-
race_ethn_race___15-
race_ethn_race___2-
race_ethn_race___3-
race_ethn_race___4-
race_ethn_race___5-
race_ethn_race___99-
recentmonth_covidtest_2-
recentresult_covidtest-
recentyear_covidtest_3-
redcap_event_name-
redcap_repeat_instance-
redcap_repeat_instrument-
self_reported_health_status_assessment-
self_reported_height_coded-
self_reported_weight_units_2-
sex_orient_desc_2-
sex_orient_id-
smoker_number-
smoke_years-
sociodem_date_mdy-
stable_housing-
survey_language-
sym_date_mdy-
take_presc_meds-
test_accesseasy_2-
test_accesswhere_2-
test_date_mdy-
tested_for_covid-
tested_positive_for_covid-
testing_comm_2___1-
testing_comm_2___2-
testing_comm_2___3-
testing_comm_2___4-
testing_died-
testing_hosp-
testing_sick-
testing_wait_2-
test_intent_2-
test_pbenearound_2-
test_pbeneexposed_2-
test_pbenepos_2-
test_pbenesafe_2-
test_pbenework_2-
test_pbeneworry_2-
test_percvaccuneg_2-
test_percvaccupos_2-
test_priskcontact_2-
test_priskhlthcare_2-
test_priskknow_2-
test_prisklater_2-
test_prisknohelp_2-
test_prisknosymp_2-
test_priskouch_2-
test_resneg_2___1-
test_resneg_2___2-
test_resneg_2___3-
test_resneg_2___4-
test_respos_2___1-
test_respos_2___2-
test_respos_2___3-
trust_coll_2-
trust_cortf_2-
trust_doc_2-
trust_fam_2-
trust_flead_2-
trust_news_2-
trust_social_2-
trust_usgov_2-
vacc_date_mdy-
vaccine_avail-
vaccine_booster-
vaccine_concerns_3___1-
vaccine_concerns_3___10-
vaccine_concerns_3___2-
vaccine_concerns_3___3-
vaccine_concerns_3___4-
vaccine_concerns_3___5-
vaccine_concerns_3___6-
vaccine_concerns_3___7-
vaccine_concerns_3___8-
vaccine_concerns_3___9-
vaccine_concerns_3___96-
vaccine_conven_2-
vaccine_dose-
vaccine_edu_post-
vaccine_edu_pre-
vaccine_effective_2-
vaccine_free_2-
vaccine_last_dte-
vaccine_literacy-
vaccine_manufac_2-
vaccine_no_pain_2-
vaccine_options-
vaccine_prev_expos-
vaccine_reasons_3___1-
vaccine_reasons_3___10-
vaccine_reasons_3___11-
vaccine_reasons_3___2-
vaccine_reasons_3___3-
vaccine_reasons_3___4-
vaccine_reasons_3___5-
vaccine_reasons_3___6-
vaccine_reasons_3___7-
vaccine_reasons_3___8-
vaccine_reasons_3___9-
vaccine_reasons_3___96-
vaccine_rec1_dte-
vaccine_requirement-
vaccine_safe_2-
vaper_years-
work_closecont_2-
work_ppe_2-
work_ppe_date_mdy-
work_wash_2-
Study Documents
Study Documents Table
Document
Document Name
File Size
Download
READMEproject88_README.html274.83 KB
Data Files
Total Files: 6
Data Files: 2
Metadata Files: 2
Dictionary Files: 2
Study Datasets Table
File Name
File Type
File Format(s)
# of Records
# of Variables
Metadata
Dictionary
project88_DATA_transformcopy.csvTabular Data - Harmonizedcsv1254
project88_DATA_origcopy.csvTabular Data - Non-harmonizedcsv1254