Avoiding ‘Evidence-Biased’ Care: Challenges of Neurodegenerative Disease Focus Groups

Elderly woman sitting alone and looking sadly outside the window
In research settings, including patients with neurodegenerative diseases presents challenges regarding consent, communication, and ability to participate that must be addressed in order to avoid evidence-biased care.

While medical research often focuses on topics relevant to vulnerable populations such as children and individuals with terminal illness, these groups are frequently excluded from qualitative studies due to issues including their ability to fully comprehend and consent to the process. According to researchers at the Cardiff University School of Medicine in the United Kingdom, this practice often results in underrepresentation of the very patients such research intends to benefit, and consequently leads to ‘evidence-biased’ care.1

Jones et al noted that that individuals with neurodegenerative diseases could be considered a vulnerable group in the context of research settings. However, while including these patients in focus groups may present multiple challenges, it is important to make reasonable efforts to do so when possible.1

“Patients with neurodegenerative disorders constitute a large portion of the population, with rates of [Alzheimer] disease alone estimated at 6.2 million in the United States… [Their] opinion and insight are valuable and should be sought,” stated Julia M. Biernot, MD, assistant professor of neurology at the University of Maryland School of Medicine in Baltimore.2 “Their contribution on matters surrounding their health, diagnoses, and future planning, to name just a few, may be very valuable.”

Based on previous work by the authors and other investigators, Jones et al described numerous issues that may arise when conducting focus group research with these patients, as well as solutions to prevent or address these challenges.1 Due to the cognitive, emotional, and behavioral changes that characterize neurodegenerative diseases, these individuals may have impairments in comprehension and decision-making capacity, which are required in providing informed consent for study participation.

Researchers should avoid making assumptions about an individual’s ability to consent based solely on disease status. Instead, patients “should be assumed to have decisional capacity unless it is established they do not once all practicable steps to support comprehension and decision making have been taken,” Jones et al advised.1

To that end, providing information in accessible formats with simple language and imagery can help to maximize comprehension prior to obtaining consent from participants with impaired cognition. “Another approach would be to monitor consent throughout the focus group study,” as this “form of ‘process consent’ is more sensitive to the issues that may arise when including vulnerable patients in qualitative research,” they wrote.1

A range of communication difficulties could affect the quality of data obtained in focus group research, which depends on the flow of conversation between patients. In fieldwork that the authors conducted with patients with Huntington disease and multiple sclerosis, for example, they found that communication problems led to social isolation.1

Deficits related to attention, memory, and word-finding, along with symptoms such as bradyphrenia and dysphasia, may lead to frustration and confusion among participants and could exacerbate disease-related behavioral changes such as aggression. These reactions could threaten the well-being of focus group members and may negatively affect the data quality.1

“While the risk of harm is low compared with other research methods, a duty to safeguard participants remains,” stated Jones et al. Their suggestions regarding such concerns include the use of vignettes to guide focus group discussion, thereby reducing the sense of personal exposure, and follow-up with a healthcare provider for any participant who experiences distress.1

Various motor symptoms, including hyperkinesia, tremor, and chorea may also interfere with focus group participation, especially among patients with Huntington disease or Parkinson disease.1 Fatigue may also negatively impact the participation of these patient populations.

The use of simplified questions, flexible timing and structure, small group sizes, and appropriate physical accommodations can help to minimize many concerns related to cognitive, physical, and behavioral limitations. Compared to research involving other populations, it may be necessary to have more frequent breaks, offer online participation, or to conduct the focus group over a greater number of sessions.1

“In addition to the issues that are listed in the article, it is important to note that some patients with neurodegenerative disorders have anosognosia, and thus their contribution to a focus group discussion about their disease may be limited,” Dr Biernot cautioned.3 “If this is the case, it may be helpful for a patient to be accompanied by a family member with insight into the patient’s ability to analyze and apply information, who can also be present to mitigate any potential emotional reaction to the topic being discussed.”

Involving a caregiver in this process also reinforces the value of the caregiver-patient relationship. Moderators, however, should confirm each participant’s agreement with statements made by caregivers to prevent undue influence in the patient’s responses.1

“I would personally be very interested to see research on the conduct of focus groups in patients with [Alzheimer] disease, and for the implications of anosognosia in this setting to be considered,” Dr Biernot added.

By anticipating and planning for the array of challenges that may occur during focus group recruitment and data collection among patients with neurodegenerative diseases, researchers can increase opportunities for these individuals to provide meaningful contributions to personally relevant fields of medicine.


1. Jones A, Morgan-Jones P, Busse M, Shepherd V, Wood F. Conducting focus groups in neurodegenerative disease populations: ethical and methodological considerations. BMJ Open. 2021;11(1):e041869. doi:10.1136/bmjopen-2020-041869

2. Centers for Disease Control and Prevention. Alzheimer’s disease. https://www.cdc.gov/dotw/alzheimers/index.html. Updated June 22, 2021.

3. Tagai K, Nagata T, Shinagawa S, Shigeta M. Anosognosia in patients with Alzheimer’s disease: current perspectives. Psychogeriatrics. 2020;20(3):345-352. doi:10.1111/psyg.12507