Avoiding ‘evidence-based’ care: the challenges of neurodegenerative disease focus groups

While medical research often focuses on topics relevant to vulnerable populations such as children and the terminally ill, these groups are frequently excluded from qualitative studies due to issues such as their ability to fully understand and consent to the patient. process. According to researchers at the Cardiff University School of Medicine in the UK, this practice often leads to an under-representation of the very patients the research is intended to benefit from, and therefore leads to “evidence-based” care.1

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

“Patients with neurodegenerative disorders constitute a large part 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, ”said Julia M. Biernot, MD, assistant professor of neurology in the University of Maryland School of Medicine in Baltimore.2 “Their input on issues surrounding their health, diagnoses and future planning, to name a few, can be invaluable. “

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Based on the previous work of the authors and other researchers, Jones et al described many problems that can arise when conducting group research with these patients, as well as solutions to prevent or overcome these challenges.1 Due to the cognitive, emotional and behavioral changes that characterize neurodegenerative diseases, these individuals may have impaired understanding and decision-making, which are necessary to provide informed consent to participate in the study.

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

To this end, providing information in accessible formats with simple language and images can help maximize understanding before obtaining consent from participants with dementia. “Another approach would be to monitor consent throughout the focus group study,” as this “form of” consent process “is more sensitive to issues that may arise when including vulnerable patients in the study. 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 the fieldwork the authors conducted with patients with Huntington’s disease and multiple sclerosis, for example, they found that communication problems lead to social isolation.1

Deficits in attention, memory, and word search, as well as symptoms such as bradyphrenia and dysphasia, can lead to frustration and confusion in participants and could exacerbate the related behavior changes. to illness, such as aggression. These reactions could threaten the well-being of focus group members and adversely affect the quality of the data.1

“Although the risk of harm is low compared to other research methods, the duty to protect participants remains,” said Jones et al. Their suggestions regarding such concerns include using vignettes to guide group discussions, thereby reducing feelings of personal exposure, and following up with a health care provider for any attendee who experiences distress.1

Various motor symptoms, including hyperkinesia, tremors, and chorea, may also interfere with participation in focus groups, especially in patients with Huntington’s disease or Parkinson’s disease.1 Fatigue can also have a negative impact on the participation of these patient populations.

Using streamlined questions, a flexible schedule and structure, small groups, and appropriate physical accommodations can help 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 conduct the focus group over a greater number of sessions.1

“In addition to the problems listed in the article, it is important to note that some patients with neurodegenerative disorders suffer from anosognosia, and therefore their contribution to a group discussion about their disease may be limited,” warned Dr Biernot. .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 the information, who may also be present to mitigate any emotional reaction. potential to the topic discussed. “

The involvement of 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 avoid undue influence in patient responses.1

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

By anticipating and planning for the range of challenges that may arise when recruiting focus groups and collecting data in patients with neurodegenerative diseases, researchers can increase the opportunities for these individuals to make meaningful contributions to research. personally relevant areas of medicine.

The references

1. Jones A, Morgan-Jones P, Busse M, Shepherd V, Wood F. Conducting focus groups in populations of neurodegenerative diseases: 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

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