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Appendix I.Descriptions of Patient-Reported Outcome Measures

Test Name / Test Description / Scores
PROMIS -Satisfaction with Social Roles and Activities / Assesses satisfaction with performing one’s social roles and activities / Consists of 44 items (e.g., “I am satisfied with my ability to do things for my family”). Each item has 5 response options ranging from “Not at all (1)” to “Very much (5).” Higher scores represent higher satisfaction.
PROMIS - Ability to Participate in Social Roles and Activities / Assesses the perceived ability to perform one’s usual social roles and activities / Consists of 35 items (e.g., “I have trouble doing all of my regular leisure activities with others”). Each item has 5 response options ranging from “Always (1)” to “Never (5).” Higher scores represent better abilities.
PROMIS - Social Isolation / Assesses perceptions of being avoided, excluded, detached, and disconnected from others / Consists of 14 items (e.g., “I feel left out”). Each item has 5 response options ranging from “Never (1)” to “Always (5).” Higher scores represent stronger feelings of being isolated.
CPI - Importance of Participation / Pertains to the involvement and meaning of participation in one’s community / Consists of 14 items (e.g., “I do important things with my life”). Each item has 5 response options ranging “All the time (5)” to “Almost never (1).” Higher scores represent greater importance of participation.
CPI – Control over Participation / Pertains to the perceived choice and control over participation in one’s community / Consists of 13 items (e.g., “I participate in activities that I choose”). Each item has 5 response options ranging from “All the time (5)” to “Almost never (1).” Higher scores represent greater control over participation.
EFIB - Access to Information and Technology (AIT) / Pertains to knowledge and information technology. Information technology includes conventional devices and technology to transmit and receive information (e.g., cellular and landline phones, computers, e-mail, and internet services). The usability of information includes factors that influence the ability to assess and understand information and includes considerations of reading level, literacy, usability, transparency, and information finding. / Consists of 23 items (e.g., “Information about medications is provided in ways that I can understand”). Each item has 5 response options ranging from “Always (5)” to “Never (1).” Higher scores represent greater access to information and technology.
EFIB - Built and Natural Environment (BNE) / Pertains to the natural and built factors in the environment, including architectural features of buildings, land development (e.g., sidewalks, roadways), environmental features (e.g., noise, crowds, indoor air quality), and cognitive and sensory cues (e.g., Braille signage). Built factors include aspects of neighborhood and community livability such as safety, lighting, and access to community living resources (e.g., stores, banks). Natural features of the environment include climate and weather conditions, preparedness for natural disasters, and means for addressing weather, climate, and emergency conditions. It includes geographical and topographical features of the environment (e.g., outdoor air quality). / Consists of 13 items (e.g., “How much difficulty do you have feeling safe due to crime in your community?”). Each item has 5 response options ranging from “Extreme difficulty (5)” to “None (1).” Higher scores represent more built and natural environmental barriers.
EFIB - Social Environment (SE) / Pertains to the social environmental framework that includes both social support and social attitudes. This domain includes both perceived positive and negative disability-related attitudes and behaviors. Item content includes marginalization, stigmatization, oppression, and discrimination (barriers) and inclusion, acceptance, respect, and fairness (facilitators). Items also cover the attitudes of both individuals (e.g., health care providers) and society as a whole. / Facilitator scale consists of 30 items (e.g., “Society is accepting of people with disabilities”), and barrier scale consists of 45 items (e.g., “Society is unkind to people with disabilities”).Each item has 5 response options ranging from “Always (5)” to “Never (1).” For the facilitator scale, higher scores represent higher positive social and societal attitudes. For the barrier scale, we rescored the items and, thus, higher scores represent fewer negative social and societal attitudes.
EFIB - Systems, Services, and Policies (SSP) / Pertains to social services, employment, education, housing, independent living, health care policies, and systems of delivery. It includes services provided by nonprofit, voluntary, and community agencies. This domain focuses on self-evaluation of system availability on everyday participation of health, living, and community activities (e.g., to what extent participation goals and needs are met), with an implied evaluation of participation impact. However, it does not focus on measuring objectively whether each feature exists in the community. / Health scale consists of 8 items (e.g., “Rehabilitation services and therapies are available when I need them”), living scale consists of 12 items (e.g., “Assistance to pay for utilities is available if I need it”), and community scale consists of 21 items (e.g., “My community offers programs to keep me healthy, like exercise or healthy eating programs if I need them”). Each item has 5 response options ranging from “Always (5)” to “Never (1).” Higher scores represent greater availability of social services, systems of delivery and health care policies.
CHIEF / Assesses the frequency and magnitude of barriers in one’s environment. It covers environmental domains of policies, physical/structural, work/school, attitudes/support, and services/assistances. / The short form consists of 12 items. Each frequency item has 5 response options ranging from “Daily” to “Never”. Each magnitude item has 2 response “Little problem” vs. “Big Problem”. Scores reflect frequency of occurrence and magnitude. A total score is the product of multiplying each item’s frequency and magnitude scores, then summing. Higher scores represent greater environmental barriers.
HACE / Assess the perception of barriers and facilitators in various aspects of the home and community environment that may influence community participation. It covers 6 domains: home mobility, community mobility, basic mobility devices, communication devices, transportation, and attitudes. / It consists of a total of 36 items, including home mobility (9 items), community mobility (5 items), basic mobility devices (9 items), communication devices (4 items), transportation (5 items), and attitudes (4 items). Response options are varied depending on the type of questions asked. Home mobility, community mobility and attitudes are computed as barrier scores; higher scores represent greater environmental barriers. Devices and transportation are computed as facilitator scores; higher scores represent greater facilitators.