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Table 1 Characteristics of the studies (n = 28) included in the review

From: Implementing patient-reported outcomes in routine clinical care for diverse and underrepresented patients in the United States

Study authors

Study aims

Study qualitya

Sample size

Medical specialty

Study setting

Geographic location

PROM(s) used

PROM modality

Anderson et al. [46]

Refine and enhance a web-enabled app intervention that facilitates patient-provider communication about adjuvant endocrine therapy-related symptoms with a racially diverse sample of breast cancer survivors and healthcare providers

6: Qualitative study

39 (34 patients, 5 nurses)

Breast medical oncology

Network of fully integrated cancer care at 9 clinic locations

Tennessee, Arkansas, and Mississippi

Medication Adherence Reasons Scale

Functional Assessment of Cancer Therapy-Endocrine Subscale (FACT-ES)—condensed version

THRIVE Intervention: web-enabled app with built-in, real-time alerts and EHR integration

Anderson et al. [47]

Assess the feasibility and efficacy of an automated pain intervention with PROs for underserved African American and Latina women

2: Randomized controlled trial

60

Breast medical oncology

Outpatient medical oncology clinic

Houston, TX

MD Anderson Symptom Inventory (MDASI)

Barriers Questionnaire II (BQ-II)

Interactive voice response (IVR) system on a telephone; cell phone provided if patient needed

Arcia et al. [36]

Develop and test English- and Spanish-language tailored infographics of the Asthma Control Questionnaire and pulmonary function test results in a diverse population of adults with persistent asthma

4: Qualitative and cohort study

Phase I participatory design: 21

Phase II comprehension interviews: 10

Primary care

Federally qualified health center and primary care clinic

Philadelphia, PA;

New York City, NY

Asthma Control Questionnaire (ACQ)

Pamphlets with infographics tailored to individual patient's ACQ score and PFT results

Calamia et al. [56]

Assess validity and feasibility of using a novel web-based application that employs self-administered approach for elderly patients to provide demographic data and self-assessments of self-rated health, depression, anxiety, and cognition

4: Cohort study

174

Psychology

Senior living community

Baton Rouge, LA

Face Name Hobby Recall (FNHR)—Immediate Free Recall, Immediate Recognition, Delayed Free Recall; Delayed Recognition; Grid Locations Immediate Recall (GLIR); Grid Locations Delayed Recall (GLDR); Symbol Line (SL); Visual Patterns (VP); Speeded Matching (SM); EQ-5D Visual Analog Scale (VAS); Logical Memory-Delayed Recall; Digital Symbol Coding (DSC); Free and Cued Selective Reminding Test (FCSRT); Geriatric Anxiety Inventory (GAI); Geriatric Depression Scale (GDS)

Novel web-based platform for self-reported demographic data and assessments of self-rated health, depression, anxiety, and cognition

Gabbard et al. [59]

Assess the feasibility of implementing an iPad-based symptom assessment tool in older adults with ESRD on hemodialysis

4: Cohort study

22

Geriatrics

Large academic tertiary medical center

North Carolina

Short-Form McGill Pain Questionnaire 2 (SF-MPQ-2); Patient Health Questionnaire-9 (PHQ-9); Generalized Anxiety Disorder 7 Item Survey (GAD-7); Dialysis symptom Index (DSI); Kidney Disease Quality of Life (KDQOL-36)

iPad application-delivery system for collecting electronic PROMs (ePROMs)

Gonzalez et al. [43]

Determine acceptability, administration times, and psychometric properties of an all-audio all-verbal speech-responsive depression screening questionnaire via cellular phone to English and Spanish speaking samples

2: Randomized controlled trial

52

Primary care

Health- and social-service facilities

San Diego, CA

Center for Epidemiological Studies—Depression scale (CES-D)

Computerized questionnaire implemented over the phone with voice recognition for interview responses, with option for touch-tone responses

Gonzalez et al. [44]

Study the reliability, validity, and acceptability of a bilingual computerized assessment of depression

4: Cohort study

166

Primary care

1 public research hospital 3 primary care clinics 1 mental health counseling center 1 social service agency

San Diego county, CA

Center for Epidemiological Studies—Depression scale (CES-D)

Computerized questionnaire implemented over the phone with voice recognition for interview responses

Hahn et al. [48]

Assess the feasibility of the implementation of a computerized QOL assessment tool among cancer patients with low literacy levels and computer skills

4: Cohort study

126

Oncology

3 cancer care centers

Chicago, IL

Functional Assessment of Cancer Therapy-General (FACT-G)

Short Form-36 HealthSurvey (SF-36)

Touchscreen delivery method with multimedia components (visual, audio)

Hinami et al. [38]

Assess implementation and associated outcomes of an audio computer-assisted self interview technology in patients with low levels of literacy

4: Cohort study

1442

General internal medicine/primary care

General medicine clinic of a large, urban public healthcare system

Chicago, IL

National Institutes of Health Patient-Reported Outcomes Measurement Information System (PROMIS) [Global Physical Health; Global Mental Health]; Memorial Symptom Assessment Scale (MSAS); Patient Health Questionnaire 2-item (PHQ-2) short form

Touch-screen enabled audio computer-assisted self-interview (ACASI) software in English or Spanish

Hirsh et al. [55]

Evaluate vulnerable patients' attitudes regarding PGA-VAS implementation in a safety-net rheumatology clinic

4: Cohort study

300

Rheumatology

Safety-net hospital clinic

Denver, CO

Visual analog scale patient global assessments (PGA-VAS): disease activity score-28 (DAS28-PGA-VAS) and multidimensional health assessment questionnaire (MDHAQ-PGA-VAS)

Written questionnaires

Jacoby et al. [60]

Determine the accessibility and feasibility of mobile health monitoring for long-term outcomes in a population of trauma patients with barriers to health and social care

4: Qualitative and cohort study

25

Trauma

Level 1 trauma Center

Philadelphia, PA

Patient-Reported Outcomes Measurement Information System (PROMIS) Sleep Disturbance Short Form; Brief Pain Inventory

Mobile health technology (FitBit) with web-based questionnaire platform

Jiwani et al. [39]

Assess the feasibility of using PROMIS questionnaires in routine diabetes care for a historically under-resourced/underserved population

2: Randomized controlled trial

26

Primary care

Community health center

Harris County, TX

Patient-Reported Outcome Measurement Information System (PROMIS): PROMIS-57 and PROMIS-Global Health (GH)

M-Health technology (mobile health)

Kasturi et al. [52]

Assess the feasibility of administering PROMIS computerized adaptive tests to a diverse cohort of patients with systemic lupus erythematosus

4: Cohort study

204

Rheumatology

Lupus center within a hospital

New York, NY

14 PROMIS CATs: Physical Function (v1.2), Mobility (v1.2), Pain Behavior (v1.0), Pain Interference (v1.1), Ability to Participate in Social Roles (v2.0), Satisfaction with Social Roles and Activities (v2.0), Fatigue (v.1.0), Sleep Disturbance (v1.0), Sleep-Related Impairment (v1.0), Applied Cognition-Abilities (v1.0), Applied Cognition-General Concerns (v1.0), Anger (v1.1), Anxiety (v1.0), and Depression (v1.0)

36-Item Short Form Health Survey (SF-36) and LupusQoL-US

PROMIS CAT administered either on site (desktop, tablet, or smartphone) or remotely using a device of patient's choice

Lapin et al. [37]

Determine patient experience of PROM collection, with a specific aim at assessing subgroups with historically lower reported quality of care

4: Cohort study

6454

Neurology

15 ambulatory neurology centers

Ohio

10-item Patient-Reported Outcome Measurement Information System Global Health short form (PROMIS-GH); Patient Health Questionnaire-9 (PHQ-9)

PROMs completed on electronic tablet before their visit or at home via their patient portal

Liu et al. [53]

Assess perspectives on PRO data visualization in a diverse population of rheumatology patients via patient and clinician focus groups

6: Qualitative study

25

Rheumatology

University or county based rheumatology clinic

California

Clinical Disease Activity Index (CDAI); Patient-Reported Outcomes Measurement Information System-physical function (PROMIS-PF); unspecified pain score

PRO data visualization dashboards that incorporated patient feedback

Loo et al. [40]

Assess implementation of an electronic PRO system in an urban community clinic that serves a diverse population, of which > 50% are LGBTQ

4: Cohort study

n/a

Primary care

3 primary care clinics

Boston, MA

Patient Health Questionnaire-9 (PHQ-9); PHQ-9 modified for adolescents (PHQ-A) Alcohol Use Disorders Identification Test (AUDIT-C), learning needs assessment, smoking and tobacco, fall risk assessment, intimate partner violence, Drug Abuse Screening Test-10 (DAST-10), Generalized Anxiety DIsorder-7 (GAD-7), Edinburgh postpartum screen

Tablet device containing PROs given at clinic visits by medical assistants and completed in the waiting room

Munoz et al. [45]

Determine the reliability and acceptability of a computerized depression screening measure for underserved Spanish-speaking patients

2: Randomized controlled trial

38

Primary care

Public sector primary care depression clinic

San Francisco, CA

Center for Epidemiological Studies—Depression scale (CES-D)

Computerized questionnaire with voice recognition for interview responses

Nyirenda et al. [61]

Evaluate the feasibility of implementing PROMs in a home health care setting of predominately older adults

4: Cohort study

91

Home health care

2 home health care agencies

n/a

Patient-Reported Outcomes Measurement Information System (PROMIS)

Tablet with electronic PROMIS survey

Ramsey et al. [57]

Assess the perceived acceptability, adherence rates, and reasons for nonadherence to smartphone-based ecological momentary assessment among older patients

4: Cohort study

103

Psychiatry

n/a

Greater San Diego, CA; Greater St. Louis, MO

Ecological momentary assessment (EMA)

Smartphone-based EMA assessment

Samuel et al. [49]

Assess ePRO user experiences and perceived valued among a diverse patient population

4: Cohort study

79

Urologic oncology; radiation oncology

Hospital urology and radiation oncology clinics

North Carolina

Patient-Reported Outcomes Measurement Information System-short form (PROMIS-SF)

Bladder Cancer Index

Expanded Prostate Cancer Index Composite

ePROs completed at home or in clinic using a web-based or automated telephone system

Patients and clinicians received a symptoms summary report at each visit

Sarkar et al. [42]

Assess usability of mobile applications for diabetes, depression, and caregiving among a diverse and vulnerable patient populations

4: Cohort study

26

Primary care

Urban outpatient primary care clinic

San Francisco, CA

Patient Health Questionnaire-9 (PHQ-9)

11 mobile applications available for iPhones or Androids, one of which involved PHQ-9 data entry

Scholle et al. [11]

Evaluate factors associated with PROM implementation in routine clinical are for a diverse patient population

4: Cohort study

490

Primary care

2 primary care clinics (FQHC and academic medical center)

n/a

Patient-Reported Outcomes Measurement Information System-29 (v2.0)

Generally completed on paper or read out loud by staff if requested/by phone

Shipp et al. [62]

Evaluate patient use of an ePRO system, with a specific aim of identifying patterns in subgroups of underrepresented populations

4: Cohort study

4898

Orthopedics (hand)

Specialty hand center

Baltimore, MD

Unspecified

Web-based intake platform that incorporates PROs

Smith et al. [50]

Assess feasibility of enrollment and collecting PRO data in routine urologic care for a racially diverse cohort

4: Cohort study

76

Urologic oncology; radiation oncology

Genitourinary oncology clinics

North Carolina

Patient-Reported Outcomes Measurement Information System (PROMIS) Sleep Disturbance, Fatigue, Anxiety, Depression, Constipation, Diarrhea, Sexual Function, and Satisfaction v1.0

Expanded Prostate Cancer Index Composite (EPIC) Urinary Domain

Bladder Cancer Index Urinary Domain

Tablet-based PRO survey in clinic with option to complete at home via the web or an automated phone survey

Stonbraker et al. [41]

Design symptom reports from longitudinal PRO data for end users, with an aim of understanding needs of patients with low health literacy

4: Cohort study

55

HIV primary care

Private office

New York, NY

Symptom Burden Score (expanded version of the 20-item HIV symptom index)

Use of the VIP-HANA mobile phone app, which incorporates PROs and symptom self-management strategies as well as longitudinal symptom reports

Wahl et al. [54]

Determine the feasibility of implementing the PF-10a in a racially and ethnically diverse population with rheumatoid arthritis

4: Cohort study

326

Rheumatology

Hospital rheumatology clinic

San Francisco, CA

Patient-Reported Outcomes Measurement Information System-Physical Function-10a (PROMIS-PF-10a)

Health Assessment Questionnaire Disability Index (HAQ)

Clinical Disease Activity Index (CDAI)

Patients complete survey in waiting room and the MA enters responses into the EHR

Wolford et al. [58]

Compare computer-assisted interviewing (CAI) with face-to-face assessments for people with severe mental illness known to be impacted by literacy and concentration problems

2: Randomized controlled trial

245

Psychiatry

Acute inpatient and outpatient publicly funded service settings

North Carolina, Maryland, and New Hampshire

PTSD Checklist (PTSD)

Dartmouth Assessment of Lifestyle Instrument (DALI)

AIDS Risk Inventory (ARI)

Web-based platform for questionnaire completion, with large text and speech options, with the opportunity to repeat questions

Zullig et al. [51]

Assess feasibility and effectiveness of PRO collection in a rural, underserved geriatric cancer clinic

4: Cohort study

44

Medical oncology

Oncology clinics

Laurinburg and Lumberton, North Carolina

Senior Adult Oncology Program (SAOP) screener

Instrument administered by clinic nurse or medical oncologist and answers uploaded into EHR

  1. aStudy quality was assessed according to Levels of Evidence (1–7) previously described by Melnyk et al. [34]
  2. App, application; EHR, electronic health record; PRO, patient-reported outcome; PROM, patient-reported outcome measure; ePRO, electronic patient-reported outcome; ePROM, electronic patient-reported outcome measure; IVR, interactive voice response; PFT, pulmonary function test; ESRD, end-stage renal disease; QOL, quality of life; ACASI, audio computer-assisted self interview; PROMIS CAT, patient-reported outcomes measurement information system computer adaptive test; LGBTQ, lesbian gay bisexual, transgender, queer; VIP-HANA, video information provider-HIV-associated non-AIDS; MA, medical assistant; CAI, computer-assisted interviewing