Key Takeaways

  • The Center for Healthy Aging (CHA) offers several optional fields in the database, which you can incorporate into your data collection tools. 

  • These data collection items are not required for the Administration for Community Living (ACL) CDSME grants, but are available if applicable.

  • Optional items focus on participants' monthly household income, self-report of early stage dementia, caregiver status, zip code, health insurance, and more.

Data elements required by the Administration for Community Living (ACL)as part of your Prevention and Public Health Fund (PPHF) are included in the OMB-approved forms, available on the primary Data Entry, Collection, and Management Resourcespage,under ‘Data Collection Tools’.

If you are a former ACL grantee, a current or former CDC Arthritis grantee, or associated with any other organization tracking your program activity in the National CDSME Database, please be advised that data fields are updated in accordance with changes to ACL/PPHF requirements. The current forms expire on 10/31/2019. Typically,new forms are available on or around the expiration date. Please be sure that your network partners are using the most current forms.

In addition, NCOA’s Center for Healthy Aging(CHA)offers severaloptionalfields in the database, which you can incorporate into your data collection tools.This sheet provides an overview of those optional items,recommended wordingand other context.

These itemsmarked as “(optional)” in the databaseand shown by their short name (highlighted in GREEN)next to the questionfor participant-level items. Optional items are often requested by database usersor program leadsthrough technical assistance calls, through annual database technical assistance surveys, or recommended by CHA staff to better monitor important programmatic changesand improve monitoring.

At this time, sensitive data, or data that can be used in combination with other fields to identify a person are not collected. This includes names, Medicare #’s, Social Security #’s, medical record #’s, participant-level Zip Codes, or Dates of Birth.Optional items are vetted by ACL.

Generally, because fields are often visible to all database users, we consider incorporating data fields that have the potential to benefit multiple grantees/networks. If you have a question that you would like to add to the optional data fields, please email the database manager at the email address below.Items that may conflict withor are similar to existing ACL required questions/fields are typically rejected.

Participant Level Items

  • Health Insurance: Collect information on the types of health insurance used by participants. Identifying the health insurance coverage of participants in your program can inform your value proposition to health payors. Include this measure in your survey if you are interested in propositioning health payors to extend coverage to your evidence-based program(s). Use this information to calculate return on investment and make your best pitch! 
    • Question: Which of the following best describes your health insurance coverage? (Please put “X” in all boxes that apply, e.g. ☒)[Health Insurance]
      • Medicare (Original)
      • Medicare Advantage Plan –(HMO, PPO, Fee-for-Service, Medical Savings Account) (Please specify: _______________)
      • Medicare Advantage Plan –(Special Needs Plans (including Dual-Eligible SNP) (Please specify: _______________)
      • Medicaid
      • Employer or Union-based Health Insurance
      • Veteran’s Health Care Benefits/Coverage
      • Veteran’s Health System
      • TRICARE/ TRICARE for Life
      • Indian Health Services
      • No Insurance
      • Other Private Insurance (Please specify): ________________________ 
  • Living Arrangements: In addition to asking the binary question about whether a participant lives alone or with others, it may be a value addto capture a picture of their living arrangements. Research has suggested that who you live with is just as important as the number of people you live with. In fact, overall well-being has been shown to vary based on living arrangement. Use this question to learn more about the participants you serve.
    • Question: Which best describes your living arrangement? (check all that apply) [Living Arrangements]
      • With others (How many, including yourself? ___)
      • Alone
      • With adult children
      • With other family or friends
      • In a nursing home or residential facility
      • Senior housing
      • Incarcerated
  • Well-Being: NCOA is encouraging the use of the 100MLives Aging Wellbeing Assessment with all of our partners to have a uniform measure of quality of life and identify promising programs and services across the aging services network. This questionis well-validated and easily integrated into the surveys. Not only does this question provide a broad overview of the well-being of the individual participant, but it provides information on how the program may influence overall quality of life. Partners across the nation are integrating these questions into their metrics. Use this question to join others in assessing well-being across a common metric and to learn how your efforts are improving quality of life. Ask this question at both pre-and post-survey points.
    • Question: Imagine a ladder with steps numbered from zero at the bottom to 10 at the top. The top of the ladder represents the best possible life for youand the bottom of the ladder represents the worst possible life for you. On which step of the ladder would you say you personally feel you stand at this time? [Wellbeing]

Worst Possible Life     0      1     2     3     4     5     6     7     8     9     10     Best Possible Life

  • Monthly Household Income: This question allows NCOA to better assess whether programs and services it supports are reaching vulnerable, low-income older adults. The narrow brackets (~$500) when coupled with the required question on ‘Living Alone (Y/N)’, can be used to estimate the individual's Federal Poverty Level. Use this question if you are interested in who you are serving and who you are missing in terms of vulnerable, low-income older adults. This question can also add to identifying which programs are most appropriate for which population. Identifying the Federal Poverty Level is a powerful indicator of your impact on struggling segments of the older adult population.
    • Question: Including yourself (and your spouse, if married), what is your combined monthly gross income now? (Consider all sources of income, including Social Security, pension, etc.)?[Monthly Income]
      • Less than $1,000
      • $1,001 -$1,499
      • $1,500 -$1,999
      • $2,000 -$2,499
      • $2,500 -$2,999
      • $3,000 -$3,499
      • $3,500 -$3,999
      • $4,000 or more
  • Alzheimer’s/Cognition: Alzheimer’s disease was previously asked as a multiple-choice option, “Has a health care provider ever told you that you have any of thefollowing chronic conditions?”This question was removed because few people responded in the affirmative(<1%). Systematic reviews in the U.S. and abroad have shown that anywhere from 50 to 90% of individuals with dementia are undiagnosed.1 Coupled with the potential stigma and under diagnoses of Alzheimer’s disease and dementias, the response rate to such a question is to be expected. Given the projections in the growth of Alzheimer’s disease and its impact on quality of life and mortality, there is continued interest in understanding the value of community-based interventions on persons with milder forms of dementia. To capture Alzheimer’s disease or related disorders, dementia, or cognitive impairment, we offer a binary  answer option (Yes or No) in the system, but the wording for this question is up to you. Depending on your objective (measure actual diagnosis, assess cognitive impairment, or undiagnosed dementia), consider the following wording options, all of which can be answered by the program participant and does not require a caregiver or informant to respond on their behalf.
    • Question Option 1: The following question on increased confusion  or memory loss was added to the Behavioral Risk Factor Surveillance System (BRFSS) optional module in 2011, thus tested in the general population 2 and has been recommended for use in Medicare’s Annual Wellness Visit. 3 ​​​​​​​
      • During the past 12 months, have you experienced confusion or memory loss that is happening more often or is getting worse? [CognitiveImpairment, Dementia, or Alzheimer’s Disease] Yes or No
    • Question Option 2The following question was shown to be sensitive enough to distinguish between individuals with dementia and individuals without dementia, though its accuracy was greater in persons with mild dementia. 4 There are some disadvantages of focusing exclusively on memory loss. Memory loss is a key symptom and important predictor and/or indicator of Alzheimer’s and related disorders; however, it is only one factors. Further, a recent study also found that a lack of awareness of that memory loss, also known as “anosognosia”, can itself be a predictor of the onset of mild cognitive impairment or Alzheimer’s disease 5 years later. 5 Together with biophysiological factors, a host of demographic and lifestyle behaviors may predict the onset of Alzheimer’s disease. 6 Mild cognitive impairment does not always lead to Alzheimer’s disease. 7
      • Are you having a problem with your memory? [Cognitive Impairment, Dementia, or Alzheimer’s Disease] Yes or No
    • ​​​​​​​​​​​​​​Question Option 3: This question resembles the existing ACL form’s checklist of chronic conditions, in which Alzheimer’s Disease was removed. Given the underdiagnoses of the disease and stigma of disclosing a diagnosis, you are likely to get fewer positive responses. Moreover, individuals with a formal diagnosis may have greater cognitive impairment, which may prevent them, or their caregiver, from enrolling in the program.
      • Has a health care provider ever told you that you have Alzheimer’s Disease or other related disorder?[Cognitive Impairment, Dementia, or Alzheimer’s Disease] Yes or No
  • ​​​​​​​Program Satisfaction: Many organizations may be offering multiple programs, or just getting their programs off the ground. If you’re interested in measuring participants’ satisfaction and overall experience with the program, consider adding a satisfaction question(s). Response options are on a 5-point Likert scale. Understanding the satisfaction with the program can provide insight into many aspects of its delivery. You should use program level data to understand the logistical side of program planning, including satisfaction with the leaders, the time offered, the location, and other factors you may not have considered. This is part of the continuous quality improvement process.
    • Question 1: How would you rate your overall satisfaction with the qualityof the program? [Satisfaction with the Program] Very Dissatisfied, Dissatisfied, Okay, Satisfied, Very Satisfied
    • Question 2: How would you rate your overall satisfaction with the location of the program?[Satisfied With Location] Very Dissatisfied, Dissatisfied, Okay, Satisfied, Very Satisfied
    • Question 3: How would you rate your overall satisfaction with the time of the program? [Satisfied with Time] Very Dissatisfied, Dissatisfied, Okay, Satisfied, Very Satisfied
    • Question 4: How would you rate your overall satisfaction with theleader(s)of the program?[Satisfiedwith Leader] Very Dissatisfied, Dissatisfied, Okay, Satisfied, Very Satisfied
  • Referrals: Wondering whether your marketing and recruitment efforts are paying off? Curious if that new partnership with the local clinic is yielding a steady flow of referrals? Did anyone act on your Facebook ads and social media campaigns? You can use several options in the database to create your own questions and track the effectiveness of your efforts. Use this question if you are interested in knowing how participants found out about the program to better inform how you spend your resources on advertising. This could also be an important question to ask to identify which providers are referring their patients to your program. This would be an opportunity to collaborate and partner to enhance and expand referral sources.
    • Question: Where did you hear about [program name]? (Please put “X” in all boxes that apply, e.g. ☒.)[Referral Source]
      • I was referred by my doctor or other medical provider
      • I heard about itfrom friends or family
      • This is a benefit offered through my health insurance (If yes, please name health insurance plan: )
      • I responded to an advertisement or invitation from a local organization (If yes, please name the organization: )
      • I heard about it through social media (e.g. Facebook) (If yes, please specify: )
      • Other, please specify:

Workshop Level Items

The following optional fields are not marked as such in the workshop data entry user interface.

  • Funding Source: Many organizations are often pulling from various funding streams or sharing other resources (e.g. personnel, licenses, space) to support any given workshop. To help track the funding source for each workshop, we encourage you to collect this data on the “Program Information Cover Sheet”. Please note that the Administration for Community Living (ACL) permits active grantees to count Title III-D funded workshops toward their Prevention and Public Health Fund grant goals. You can select multiple funding sources in the system by holding down the Ctrl button and clicking on all the funding sources you wish to select.
    • If you scroll the bar on the right, you’ll see an extensive listing of funding sources.
      • ACL CDSME GrantOlder Americans Act (Title III-D, Title III-E, etc.)
      • Centers for Disease Control and Prevention
      • Other Federal Funding
      • Medicaid / Medicaid Waiver
      • Medicare Advantage
      • Other Health Care Payer
      • Foundation Funding
      • Corporate sponsor
      • Don't Know
      • Other
  • Program Format: For many years, organizations only tracked in-person programs in the National CDSME Database. With many programs now offered in multiple formats, NCOA is interested in monitoring differences in the demographic of participants who elect one format vs another; examining completion rates; and mapping the growth of these alternate program formats. 
    • Under Workshop Format, select from the drop-down menu:
      • in person (group)
      • One-on-one
      • Online
      • Hybrid (mix of online + in-person)
      • Self-directed/at home