{
  "abstract": "Objective Patient engagement (PE), or a patient’s participation in their healthcare, is an important component of comprehensive healthcare delivery, yet there is not an existing, publicly available, measurement tool to assess PE capacity and behaviours. We sought to develop a survey to measure PE capacity and behaviours for use in ambulatory healthcare clinics.Design Measure development and psychometric evaluation.Setting and participants A total of 1180 adults in the USA from 2022 to 2024, including 1050 individuals who had indicated they had seen a healthcare provider in the prior 12 months who were recruited nationally via social media across three separate samples; 8 patient advisors and healthcare providers recruited from a large, midwestern US Academic Medical Center; and 122 patients recruited from five participating ambulatory clinics in the Midwestern USA.Methods An initial survey was developed based on a concept mapping approach with a Project Advisory Board composed of patients, researchers and clinicians. Social media was then used to recruit 540 participants nationally (Sample 1) to complete the initial, 101-item version of the survey to generate data for factor analysis. We conducted exploratory and confirmatory factor analyses to assess model and item fit to inform item reduction, and subsequently conducted cognitive interviews with eight additional participants (patient advisors and providers; Sample 2), who read survey items aloud, shared their thoughts and selected a response. The survey was revised and shortened based on these results. Next, a test–retest survey, also administered nationally via another round of social media recruitment, was administered two times to a separate sample (n=155; Sample 3), 2 weeks apart. We further revised the survey to remove items with low temporal stability based on these results. For clinic administration, research staff approached patients (n=122; Sample 4) in waiting rooms in one of five ambulatory clinics to complete the survey electronically or on paper to determine feasibility of in-clinic survey completion. We engaged in further item reduction based on provider feedback about survey length and fielded a final revised and shortened survey nationally via a final round of social media recruitment (n=355; Sample 5) to obtain psychometric data on this final version.Primary and secondary outcome measures Cronbach’s alphas, intraclass correlations (ICCs), Comparative Fit Index (CFI), root mean square error of approximation (RMSEA), standardised root mean squared residual (SRMR).Results The final PE Capacity Survey (PECS) includes six domains across two scales: ‘engagement behaviours’ (ie, preparing for appointments, ensuring understanding, adhering to care) and ‘engagement capacity’ (ie, healthcare navigation resources, resilience, relationship with provider). The PECS is 18 questions, can be completed during a clinic visit in less than 10 minutes, and produces scores which demonstrate acceptable internal consistency reliability (α=0.72 engagement behaviours, 0.76 engagement capacity), indicating items are measuring the same overarching construct. The scales also had high test–retest reliability (ICC=0.82 behaviours, 0.86 capacity), indicating stability of response over time, and expected dimensionality with high fit indices for the final scales (behaviours: CFI=0.97; RMSEA=0.07; SRMR=0.05; capacity: CFI=0.99; RMSEA=0.06; SRMR=0.06), indicating initial evidence of construct validity.Conclusions The PECS is the first known measure to assess patients’ capacity for engagement and represents a step toward informing interventions and care plans that acknowledge a patient’s engagement capacity and supporting engagement behaviours. Future work should be done to validate the measure in other languages and patient populations, and to assess criterion-related validity of the measure against patient outcomes.",
  "authors": [
    {
      "affiliations": [
        "Department of Health Outcomes and Biomedical Informatics, University of Florida, Gainesville, Florida, USA"
      ],
      "name": "Megan E Gregory"
    },
    {
      "affiliations": [
        "Center for Health Equity, Dayton Children’s Hospital, Dayton, Ohio, USA"
      ],
      "name": "Cynthia J Sieck"
    },
    {
      "affiliations": [
        "Department of Family and Community Medicine and Center for the Advancement of Team Science, Analytics and Systems Thinking in Health Services and Implementation Science Research (CATALYST), The Ohio State University College of Medicine, Columbus, Ohio, USA",
        "Division of Health Services Management and Policy, The Ohio State University College of Public Health, Columbus, Ohio, USA"
      ],
      "name": "Daniel M Walker"
    },
    {
      "affiliations": [
        "Center for the Advancement of Team Science, Analytics and Systems Thinking in Health Services and Implementation Science Research (CATALYST), The Ohio State University College of Medicine, Columbus, Ohio, USA"
      ],
      "name": "Gennaro Di Tosto"
    },
    {
      "affiliations": [
        "Department of Psychology, Arizona State University, Tempe, Arizona, USA"
      ],
      "name": "Michael C Edwards"
    },
    {
      "affiliations": [
        "Division of Health Services Management and Policy, The Ohio State University College of Public Health, Columbus, Ohio, USA",
        "Department of Family and Community Medicine",
        "Center for the Advancement of Team Science, Analytics and Systems Thinking in Health Services and Implementation Science Research (CATALYST)",
        "Department of Biomedical Informatics, The Ohio State University College of Medicine, Columbus, Ohio, USA"
      ],
      "name": "Ann Scheck McAlearney"
    },
    {
      "affiliations": [
        "Houston Methodist Hospital, Houston, Texas, USA"
      ],
      "name": "Sarah Gebretsadik"
    },
    {
      "affiliations": [
        "Center for Health Equity, Dayton Children’s Hospital, Dayton, Ohio, USA"
      ],
      "name": "Tess V DeVos"
    },
    {
      "affiliations": [
        "Division of Health Services Management and Policy, The Ohio State University College of Public Health, Columbus, Ohio, USA"
      ],
      "name": "Jennifer L Hefner"
    }
  ],
  "title": "Development and psychometric evaluation of a new self-report measure to assess patient engagement behaviours and capacity in the USA: the Patient Engagement Capacity Survey",
  "uid": "485bb30e-0a17-5741-8222-8551f7243989"
}