Appendix 2:

Ableism: Discrimination and prejudice against people with disabilities.

Audio diary: A collection of first-person experience reports in which people verbally record responses or journal entries about their daily lives.

Caregiver: A person who provides support for another individual living with disabilities who might have a broad range of needs. They can be “family, kin, and grandparent caregivers” or direct care workers. A family, kin, or grandparent caregiver is someone who cares for members of their family of origin, or for their family of choice. A direct care worker provides caregiving support in home and community-based settings as part of their paid employment.

Centers for Medicare and Medicaid Services (CMS): A federal agency within the Department of Health and Human Services that administers the Medicare program and works in partnership with state governments to administer Medicaid, the Children’s Health Insurance Program (CHIP), insurance available through marketplaces created under the Affordable Care Act, and health insurance portability standards.

Clinical trial: A research study performed in people aimed at evaluating a medical, surgical, or behavioral intervention. The primary way that researchers find out if a new treatment, like a new drug or diet or medical device is safe and effective in people.

Cognitive dysfunction or impairment (aka “brain fog”): Deficits in attention and concentration, verbal and nonverbal learning and recall, short-term and working memory, visual and auditory processing, problem solving, processing speed, and motor functioning. This is a symptom that many, although not all, people with Long COVID experience.

Contextual support: Other factors that contribute to the intensity and nature of Long COVID’s impact on a person’s life. Also referred to as “social determinants of health,” these are conditions that affect a wide range of health, functioning, and quality-of-life outcomes and risks. In this report, contextual support describes a range of resources that may or may not be available to someone, and barriers to health care, support, and overall living stability.

CPT® code: The Current Procedural Terminology (CPT®) codes offer doctors and health care providers a uniform language for coding medical services and procedures to streamline reporting, increase accuracy and efficiency.

Desk research: Research that is performed at the start of each engagement. It includes reviewing critical papers, studies, and other key publications to develop a comprehensive understanding of the landscape around the health issue placed in focus. Desk research helps our researchers formulate objectives, questions, and goals for their interviews, workshops, and diary studies with people affected by the disease.