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Towards a self-reported assessment of physical frailty: updates and challenges

Physical frailty is commonly defined by the Physical Frailty Phenotype (Fried et al, 2001), which uses a combination of self-report and objective measures. Physical frailty is a powerful predictor of health outcomes, but it is rarely used outside of research settings because of challenges with implementation. In a busy clinical setting, performing repeated grip strength and timed walking tests is rarely feasible. Self-report questionnaires, in contrast, are easily administered both in the office and even at home for telemedicine visits. Currently, fully self-reported assessments, such as the FRAIL Scale, are not strongly correlated with the PFP (Aguayo et al, 2017).  We therefore set out to develop a self-reported tool that would correlate well with physical frailty, and thus be useful in settings with time and resource constraints.

In our recent study published in the BMC Geriatrics, we tested several possible self-reported frailty phenotypes which included different combinations of questions focused on slowness and weakness (Buta et al, 2022). When we substitute sets of 3 questions for each of the objective measures in the PFP there was substantial agreement between standard and self-reported measures of physical frailty for a 2-level model of frail/non-frail (Kappa=0.76– 0.78). We also found the highest sensitivity (86.4%) and negative predictive value (98.7%) for identifying frail older adults when comparing the standard PFP to a self-reported version that included these 3 slowness- and 3 weakness-related questions. The self-report tool took participants less than 5 minutes to complete.

Table of Physical Frailty Measures/ Criteria Assessed in this Study

We found only fair-to-moderate levels of agreement in a 3-level model that categorized participants as either frail, pre-frail or non-frail. Also, the generalizability of our findings may be limited by the study population of aging registry participants from the Baltimore area. Compared to US national demographics (US Census Bureau), our study population had a higher prevalence of participants who were female; African American; and had completed a bachelor’s degree or higher.

Clinician with hispanic female older adultOur results show the utility as well as the challenges of using self-reported questions to identify a frailty phenotype in clinic. Additional testing in general clinic populations should be done, with refinement of the questionnaire as needed, since a self-reported physical frailty measure with high agreement to the standard phenotype will be a valuable frailty screening assessment in both clinical and telehealth settings. To this end, we have recently published complementary work in a larger epidemiological study that highlights the importance of selecting viable self-report measures: common self-reported disability questions do not appear to serve as strong proxies for the physical frailty phenotype’s performance-based measures (Bandeen-Roche et al, 2023). Additional efforts to simplify the assessment of physical frailty are ongoing (Chen et al, 2023).

The results of this study suggest that a self-report assessment would be valuable as a screening tool if it has low rate of “false negatives”–that is we are unlikely to miss people who would be categorized as frail by the standard phenotype.  In order to optimize clinical intervention early in the course of physical frailty, a sensitive screening tool that is easy to administer followed by targeted objective tests to confirm frailty is an efficient strategy but depends on the effectiveness of the interventions. In Europe, a population wide, app-based frailty screening effort is underway that includes interventional targets following screening and comprehensive evaluation (Subra, 2012). It will be important in the future to follow up this research with high quality intervention studies.

Frailty in LGBTQ+ Adults: notes from a conversation with Dr. Karen Fredriksen-Goldsen

Older adult male holding rainbow flagRecently, I asked Dr. Karen Fredriksen-Goldsen, Professor at the University of Washington School of Social Work and Director of the Goldsen Institute, to share her thoughts about frailty in older LGBTQ+ adults. Dr. Fredriksen-Goldsen is a pioneer in research on LGBTQ+ aging.  She led the nation’s first federally-funded longitudinal study of the health and wellbeing of LGBTQ+ people over the age of 50, “Aging with Pride: National Health, Aging, and Sexuality/Gender Study.” When I brought up the topic of frailty-specific insights in this population, Dr. Fredriksen-Goldsen noted that frailty was a significant problem for LGBTQ+ older adults: 

 

“[Frailty] is an area that really warrants more research and understanding in terms of incidence and prevalence [among LGBTQ+ older adults].”

“We do see higher rates of frailty; I know it is different than disability, but we find disabilities as early as the age of 18 [among lesbian and bisexual women]—that creates vulnerability for frailty.”

 

Research on aging is not the same as a specific attention to frailty, a state of heightened vulnerability to stressors, where studies among LGBTQ+ older adults lag despite a growing body of evidence that the risk factors for frailty are increased in this population. For example,  LGBTQ+ older adults are at increased risks for accelerated aging syndromes and poor health outcomes compared to peers in the general population (Fredriksen-Goldsen et al., 2013; Karen I. Fredriksen-Goldsen, 2017). Trajectories associated with physical and cognitive decline in LGBTQ+ adults are consistent with the consensus on frailty definitions (e.g., Morely et al., 2013), allowing for current frailty research methodologies to be directly employed in future studies in Frailty Science.  Dr. Fredriksen-Goldsen noted that research on LGBTQ+ older adults needs to measure all the factors that mediate frailty in the general population in order to be able to understand the origins of the differences. “[The concept of frailty is] why we have added physical activity [to our research metrics].”

A potentially hidden minority, well-known social determinants of health that can be specific to this this population also contribute to vulnerability (Fredriksen-Goldsen et al., 2011; Fredriksen-Goldsen and Muraco, 2010; see also Healthy People 2020 report on LGBT Health and the AARP’s “Dignity 2022: The Experience of LGBTQ Older Adults”). Dr. Fredriksen-Goldsen observed that much of the general population-based data “doesn’t have good measures” to gather LGBTQ+ status. Even when attempted in surveys assessing same-sex married couples, “research limitations exist,” in this case leaving out data on those who are not married.  Some approaches are not well-informed by the community.

For additional insight, I asked Dr. Jason Flatt, Assistant Professor in the Social and Behavioral Health Program at the University of Nevada-Las Vegas School of Public Health, about the dearth of frailty-specific information on LGBTQ+ elders and he noted: “I haven’t seen much in frailty and LGBTQ broadly, but I think if we look at frailty studies in non-LGBTQ+ we would see disparities for subgroups. Transgender and Bisexual older adults stand out for me.” He encouraged researchers to try and identify such subgroups, suggesting:  “I think you could take indicators from the Behavioral Risk Factor Surveillance System or the National Health Interview Survey.” 

Interestingly, studying frailty in the LGBTQ+ community may also provide insight into mechanism by which to avoid frailty and preserve resilience. Specific generations within the LGBTQ+ older adult cohort are more resilient and aging better than others (Karen I. Fredriksen-Goldsen, 2017“Lessons on Resilience from LGBTQ+ Elders.”).  Interventions are in early days for frailty in general (explore our interventions page for more information); and with the added health challenges and counter-balancing community resources (Fredriksen-Goldsen and Muraco, 2010) that can affect the health-span trajectories of LGBTQ+ older adults, ensuring that the frailty research field includes this aspect of diversity will be of value to all.

I posed these frailty-related questions to Dr. Fredricksen-Goldsen in the Q&A after her webinar Emerging from the Margins: LGBTQ+ Health and Aging” presented to the public by the Center for Aging Population Sciences, University of Texas at Austin, on March 30, 2022. In this talk, Dr. Fredriksen-Goldsen reviewed results on the health, aging, and well-being of LGBTQ+ older adults from “Aging with Pride”–a longitudinal study of 2,450 demographically diverse LGBTQ+ older adults from 2003 to 2010 at 18 partner centers across the nation. Here is a few key take-away points from her talk:

  • Currently, there is approximately 2.7 million LGBTQ+ older adults in the United States; this number is expected to increase to 20 million by 2060.
  • 9 out of 12 Lesbians, Gay men, and Bisexuals had higher rates of a disabling, chronic condition, including stroke, heart attack, and weakened immune system than heterosexuals.
  • Overall, 41% have a disability.
  • Lesbian and Bisexual older women had higher rates of disability, cardiovascular conditions, and physical limitations than Gay and Bisexual older men.
  • Gay and Bisexual older men had greater risk for overall poor health and for living alone compared to Lesbian and Bisexual older women.
  • Lesbian, Gay, and Bisexual older adults have higher rates of disability and mental distress than heterosexual older adults.
  •  Lesbian and Bisexual older women have higher rates of cardiovascular disease and obesity than heterosexual older women.
  • Gay and Bisexual older men are more likely to experience poor physical health and to live alone than heterosexual older men.
  • Transgender older adults have higher rates of disability, depression, and loneliness than non-transgender older adults.
  • Overall, most LGBTQ+ individuals are aging well.

I deeply thank Dr. Fredriksen-Goldsen for entertaining my questions about frailty following this talk, and for sharing her wise insights. The statistics above can be found in fact sheets and other reports online at: www.GoldsenInstiute.org.

Finally, in honor of pride month, we also hope that clinicians working with older adults will consider renewing their engagement with cultural humility vis-a-vis care for their LGBTQ+ older adults, and revisit training in this space. This year, as a first step toward this purpose, Johns Hopkins Medicine’s Division of Geriatric Medicine and Gerontology’s Mosaic Initiative partnered with Medicine for the Greater Good in a project called “Geriatricians Engaged and Ready (“GEARed’) for LGBTQ+ Aging, Health, & Wellness,” which has been training a core of 17 clinicians and one staff member on LGBTQ+ older adult healthcare through free CME courses offered by the Fenway Institute’s National LGBTQIA+ Health Education Center. In addition, GEARed providers received enamel pins, badge reels, and stickers for their clipboards with a logo incorporating the recently updated rainbow pride and Transgender flag colors encircling the statement “You are safe with me.” The hope is that such easily recognizable symbols will help to facilitate both patient interactions and new conversations about LGBTQ+ older adult health among colleagues. GEARed providers can thus become better partners in care to achieve better health outcomes across the institution. Anyone wishing to explore implementing such a program in their practice can contact me.

For more resources on LGBTQ+ Elders and their health needs, see this related blog: Top 10 Recommended Resources About LGBTQ+ Aging & Older Adults

Family Caregiving: An Essential Resource for Older Adults

It is estimated that somewhere between 18 million (Schulz & Eden, 2016) and 53 million (AARP, 2020) Americans provide care to an older adult with a disability who needs some type of help with basic living needs.  This care can include help with grooming, bathing, or dressing; assistance with mobility or preparing meals, or help with managing finances or medical appointments.  Most older adults with dementia, limited physical capabilities, or major sensory problems depend on family members or close friends for this kind help on a regular basis.

Substantial research over the past 30+ years has examined the health and well-being of family caregivers.  Many of these studies have been inspired by a stress process model of caregiving (Pearlin et al., 1990), which emphasizes that caregiving can lead to both primary stressors that are directly associated with care delivery and secondary stressors that are indirect consequences of caregiving, such as reduced opportunities for leisure activities.  This model is frequently invoked as part of an advisory narrative – that the stress of caregiving can be substantial and can lead to health problems for the caregivers (Pinquart & Sörensen, 2003).

More recently, however, researchers have countered this stress process narrative with alternative perspectives that emphasize the potential health benefits of prosocial helping behaviors.  Research on volunteerism and social support has shown that people who help others are generally healthier themselves (Brown and Brown, 2015; Okun et al., 2013), remaining more active in their lives and finding purpose in the positive influences they have on others.  Perhaps caregiving can also have this beneficial effect, much like volunteering within one’s own family or social circle.

These competing narratives may both be true to some extent.  Most caregivers do report positive benefits associated with their caregiving experiences (Roth et al., 2015), but a small minority of caregivers also find the stress of caregiving to be quite high.  A prominent early study concluded that the stress of caregiving may even be associated with higher mortality rates for caregivers (Schulz and Beach, 1999), but at least eight subsequent studies, with larger samples and longer follow-up periods, have found just the opposite pattern — that caregivers live longer or have lower mortality rates than several non-caregiving comparison samples (Roth et al., 2015; Mehri et al., 2021).  In one follow-up study, caregivers were found to have higher rates of depressive symptoms than non-caregivers, but lived longer anyway (Roth et al., 2018), suggesting the caregivers benefitted from a resilience to stress due to their prosocial helping activities, similar to resilience benefits of older adults who are active in volunteer organizations.

Caregiving, therefore, can be stressful, but that stress is usually not dangerous or leading to life-threatening illnesses.  Caregiving, like parenting, is a normal and usually healthy relationship within families – sometimes stressful, but more often rewarding and fulfilling, and something that should be encouraged.  More evidence is needed to understand how frailty might impact caregiving burden (Ringer et al., 2017), but even for highly vulnerable “frail” persons, the benefits of providing support may likely outweigh any detrimental effects.

The real threat to the caregiving resource for older adults in the years to come is a looming shortage in number of traditional family caregivers.  In the past, older adults have typically depended on spouses or adult children for this type of care, but, because marriage rates and birth rates have steadily declined over the past several decades, there are now fewer spouses and fewer adult children available to take on these roles.  Caregiving networks, organized through faith-based groups and other community organizations, may be part of the solution.  We should all start looking around for family members and friends whom we can help, even if they might be outside of our own traditional nuclear families.  If anything, the research convincingly shows that this type of helping behavior is not only good for those who are receiving care, but also for the helper as well.    

Intergenerational African American Family

Self-Efficacy as a Tool for Older Adults to Cope with Coronavirus

JS is a 72 year-old caregiver to her 75 year-old husband with advanced heart failure.  She usually brings him in to clinic every 3 months.  In April, she was able to conduct a telemedicine visit with the heart failure clinic. She said her grand-daughter had face-timed with her from out of state and talked her through using the computer to connect to the electronic record, but she had to search for her glasses to read the weight chart to the provider, as she could not scan and upload it. And she got flustered manipulating the camera to show his degree of edema. She requested refills but, she expressed a sincere fear of going to the pharmacy to pick-up the medications, where there may be sick people.  JS is not alone in the adaptations she is making or the stress she feels from having to do so.  Even formerly routine activities of daily living like grocery shopping feel oddly intense, full of new rules and routines. This is not normal time; this is pandemic time, and the impacts on health are likely to be significant even in those who never get COVID-19.

How do we as clinicians help older adults manage the stress arising from this pandemic?  Researchers have shown that improving “self-efficacy” may help. Self-efficacy is confidence to perform well at specific tasks or in specific domains (Bandura, 2001). No one has any experience mastering the adaptations to stay-at-home orders, but it is not surprising that people with better personal resources and confidence are more likely to successfully solve new problems.  Self-efficacy has been studied extensively as a mechanism to improve health outcomes and well-being (Marks et al., 2005). For example, Lorig and colleagues designed a self-management program for those with chronic disease built on self-efficacy principles and showed 6 month improvements in exercise, well-being, fatigue, pain and provider communication (Lorig et al., 1999). In a sample of 831 participants who completed the Lorig self-management program, there was a 2-year reduction healthcare utilization and health distress (Lorig et al., 2001). Unfortunately, at the same time that disruptions are requiring high levels of self-efficacy, the social isolation, financial stresses, lack of access to fresh food and medicine and exercise, are all working against the easy adaptation to new conditions.

There are four ways clinicians can work with patients to build more self-efficacy:

  1. Personal Mastery.  Past experiences influence confidence to perform the same task successfully today. One such task is coping with sorrow and stress.  Clinicians can reflect on the past with patients, help them recall their prior positive ways of coping and apply them to today’s situation. In addition, a sense of mastery can be built for a new task by finding parallels with old tasks. Ms. Julia has always been a strong advocate for her husband. She asks questions, takes notes, brings everything in a binder with her to the clinic. Reminding her that she figured out what was needed in clinic and that next time she will know what she needs for the telemedicine visit reassured her. We planned another visit in a short time interval so that she could practice.   Everyone has mastery in their lives. Find it, remember it and apply it now.
  2. Positive Modeling. This is the observation of how other people have performed a task well. This is particularly difficult for older adults who are frequently further isolated during the stay-at-home conditions by their lack of facility with the technology that would allow them to stay connected to their social network. It is exactly the ability to master technology that is the skill which they need help (and coaching will help)!  But people stayed in touch before there were iPads, or even phones. My teenager got a letter, on real stationary, from a friend the other day, and felt so connected by that, she even wrote back! JS and her husband have an active local church group, and talking about those friends she realized that many might be able to help her figure out how to go to the pharmacy and grocery store safely. Modeling expands personal mastery through social learning.
  3. Coaching.  Coaches inspire and encourage and for older adults trying to use technology, some of the best coaches will be from younger generations, just as JS’s grand-daughter who helped her, with the added benefit of decreasing the social isolation during the coaching session. This coaching can go both ways in such situations. The act of coaching will also improve self-efficacy and reinforce the sense of self-mastery discussed above.  Although knowledge about coronavirus is evolving, the stress induced by the presence of a pandemic- the social isolation, the financial strain, the health fears- are not new and many older adults will have guidance to offer younger family members coping with losses like sports seasons and school graduations, the social fun of being a kid. Asking older adults about their families and experiences can help them recognize the support they have to offer as well as receive.
  4. Listening to the Body. The body itself provides feedback via the stress response networks, reflecting the confidence a person has to positively address a stress experience.  Sometimes simply acknowledging the body’s own contribution to emotions and self-efficacy is enough to release the physical sensation (like stomach pain) and move on.  Tools to help acknowledge and integrate the body’s sensations include a good cry, sleep, meditation and prayer, journaling, talking it out and exercise.

Improving self-efficacy will look different for each person. And this pandemic is not fair. Structural changes are needed to address all the inequities and challenges of this pandemic that are not impacted by our individual or collective agency and ability to cope.

The good news is that increasing self-efficacy is possible at any age. Spending a little time during clinical visits acknowledging each patients’ strengths and masteries and help identify sources for modeling and coaching, can go a long way toward improving well-being and maintaining health status for older adults during this crisis.

Melissa deCardi Hladek is an Assistant Professor at Johns Hopkins University who studies stress and resilience in the context of aging.

References 

Bandura, A. (2001). Social cognitive theory: an agentic perspective. Annual Review of Psychology, 52, 1–26. 

Lorig, K. R., Ritter, P., Stewart, A. L., Sobel, D. S., Brown, B. W., Bandura, A., Gonzalez, V. M., Laurent, D. D., & Holman, H. R. (2001). Chronic disease self-management program: 2-year health status and health care utilization outcomes. Medical Care, 39(11), 1217–1223. 

Lorig, K. R., Sobel, D. S., Stewart, A. L., Brown, B. W., Bandura, A., Ritter, P., Gonzalez, V. M., Laurent, D. D., & Holman, H. R. (1999). Evidence suggesting that a chronic disease self-management program can improve health status while reducing hospitalization: a randomized trial. Medical Care, 37(1), 5–14. 

Marks, R., Allegrante, J. P., & Lorig, K. (2005). A review and synthesis of research evidence for self-efficacy-enhancing interventions for reducing chronic disability: implications for health education practice (part II). Health Promotion Practice, 6(2), 148–156.