Recommendations

A key finding from our engagement with older adult research participants was the need for flexibility in data collection methods. Some older adults were comfortable with web-based data collection or using smart devices, others preferred "pen and paper." Knowing that data collection could be matched to their needs and preferences may make older adults be more likely to participate.

Research studies often focus on one condition or disease at a time. However, older adults commonly have multiple chronic conditions (MCC) or health issues. Some older adults were concerned that participating in a research study would affect their other conditions. Acknowledging this concern and having relevant information on the impacts of research participation on common co-occurring conditions may help accommodate the needs of older adults with MCC.

Useful Link: https://clic-ctsa.org/education/aging-multimorbidity-polypharmacy-and-inter-current-health-events-research-implications

The prevalence of moderate hearing loss (40 dB) increases from 3% among people 50-59 years old to 45% among those ≥ 80 years old. In a study setting, moderate hearing loss would cause difficulty hearing a lowered voice in a noisy waiting room. Rather than excluding those with hearing impairment and to avoid miscommunication, a "hearing protocol" can encourage best practices. See example hearing protocol in resources.

Resource:

The prevalence of mobility limitations and slow gait speed (<1.0 m/s) increases from 25% in adults 65-69 years old to 75% among those ≥ 80 years old. As walking across a street at a cross-walk may require a gait speed > 1.4 m/s, ambulating to many research settings may be difficult for older adults. The use of assistive devices are also common among older adults. By 80 years old, more than 1 in 10 older adults use more than one assistive device. Matching the right device with the research setting is important. For example, canes or walkers may work for short distances, but wheelchairs may be needed for longer distances.

By age 70, nearly 20% of older adults have farsightedness and 3% have significant eye disease which can impact one's ability to see. Simple strategies to increase visibility of written materials can support participation. With aging, it is also common for people to have more difficulty high glare situations (see a researchers face when there is a glare from a window). Certain eye diseases affect central (macular degeneration) or peripheral vision (glaucoma). This could cause vision to be worse with different orientations of rooms or based on the angle of screens or monitors.

Many study protocols are designed with the goal of maximizing efficiency from the study team perspective. Examples include using pill blister packaging cards, packaged data specimen collection instruments, small monitoring devices that can be easily mailed. Age-related issues including hand arthritis/reduced grip strength, tremors, or visual impairment, can reduce one's ability to complete study protocols. Occupational therapists can often recommend strategies to support this type of function in older adults.

"One idea that I feel would help our workflows is to address each subject individually and find out what works for the individual instead of the group. A subject is more likely to be receptive to participation if they are comfortable." -Research Coordinator

"I'm willing to overcome some barriers, but not if means pain and suffering. My walking causes pain. I'm a strong supporter of research...I will do almost anything I can if the barrier to accessing the location doesn't cause pain." -Emeritus professor in public health and dedicated research participant

Inconveniences of participating in a research study are not limited to the participant. For older adults, caregivers often contribute by scheduling research visits, providing transportation, and helping participants follow research protocols. The needs and preferences of caregivers, including spouses, adult children, friends, community members, or paid caregivers should be accommodated.

Useful Link: https://eldercare.acl.gov/Public/index.aspx

The use of Legally Authorized Representatives (LAR) to obtain consent varies by state and each study will need to work with their IRB to determine rules for the state in which they conduct research. This work is better done early in the IRB process rather than when enrollment start dates are looming.

Example: The Clinical & Translational Science Award (CTSA) Inclusion of Older Adults Working Group developed a helpful toolkit that includes resources for those with cognitive impairment (linked below).

Useful Link: https://clic-ctsa.org/education/including-vulnerable-older-adults-research-case-people-cognitive-impairments

Example: The Strategies to REduce Injuries and Develop Confidence in Elders (STRIDE) study provides good examples for developing a clear message including using "story cards" and a signed notecard from Martha Stewart.

Useful link: Health Literacy Checklist for Research Communication

Reference: https://pubmed.ncbi.nlm.nih.gov/30020415/

Example: The Clinical & Translational Science Award (CTSA) Inclusion of Older Adults Working Group developed a helpful toolkit that includes resources for those with cognitive impairment (linked below).

Useful Link: https://clic-ctsa.org/education/including-vulnerable-older-adults-research-case-people-cognitive-impairments

Reference: https://pubmed.ncbi.nlm.nih.gov/17679641/

"Before enrollment started, our team walked down to check out the space that had been provided for our study. It was obvious that it was not going to work for our older participants who often use wheelchairs and are accompanied by their caregivers. Luckily, we were able to find a room that better fit the needs of our study population. Finding space to conduct research study visits in a busy medical center can be a challenge and it helps to plan ahead." -Principal investigator

Example: Research facilities dedicated to studying older populations can serve as models for the types of equipment that may be helpful for recruiting older adults.

Useful Link: https://aging.ufl.edu/research/research-facilities/clinical-research-rc1-facilities/

Proxy informants are often used in aging research. See references for best practices and guidance maximizing reliability of data collection.

References:

• https://pubmed.ncbi.nlm.nih.gov/11129756/
• https://pubmed.ncbi.nlm.nih.gov/29733342/

"In my experience recruiting participants, and particularly older adults, I have realized that it is essential to make the process of participating in a research study as easy as possible. Often one way to do this is to meet them at a convenient location for them -- whether that be in a community center, a location closer to where they live with easier parking, or even at their house for some studies." -Research Coordinator

"I always meet participants at the entrance of a building and escort them to the study area. It can be confusing and overwhelming to have to park, locate a building, and then figure out how to get to the right floor, etc. A friendly face meeting them to help them through that process goes a long way in making them feel comfortable and ready to participate." -Research Coordinator

Older adults in rural areas and those with functional limitations are more likely to report transportation problems. Transportation can be arranged by contracting with local transportation venders, providing cab vouchers, or arranging transportation using mobile ride-share services. Budgeting 15% for transportation services will ensure that funding will be available. Additional information on transportation is available from the Eldercare Locator, a public service of the U.S. Administration on Aging.

Useful Link: https://eldercare.acl.gov/Public/Resources/LearnMoreAbout/Transportation.aspx

Resource:

Useful Link: https://preventabletrial.org/clinicians.cfm 

Useful Link: https://clic-ctsa.org/education/including-vulnerable-older-adults-research-case-people-cognitive-impairments

Resource:

Resource:

Resource:

Example: The PREVENTABLE Study includes a single telephone number as well as an information on the call center team.

Useful Link: https://preventabletrial.org/Call%20center%20brochure%20v2EnglishandSpanish.pdf