Clinical trajectory of hypermobile Ehlers-Danlos syndrome/hypermobility spectrum disorders in older adults.

BACKGROUND: Research on hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorder (hEDS/HSD) has described its natural history and clinical course in children, adolescents, and young to middle-aged adults. However, more research is needed on the clinical trajectory of hEDS/HSD into older age. Therefore, clinicians, including nurse practitioners, know little about identifying older adults with undiagnosed hEDS/HSD. OBJECTIVE: This review sought to identify studies regarding aging in hEDS/HSD. DATA SOURCES: This scoping review included PubMed, Cumulative Index to Nursing and Allied Health Literature, and Scopus and found 15 studies that mentioned age or aging on the symptoms and health-related quality of life. CONCLUSIONS: No study had a stated aim regarding aging in hEDS/HSD, but all studies corroborated earlier natural history studies describing the age-related trajectory of manifestations in younger people. Studies found that symptom progression was heterogeneous, multisystemic, and unpredictable. Studies also noted prolonged diagnosis delays and long symptom duration, but the impact of these factors on outcomes was unclear. The high variability in patient outcomes precludes the prediction of outcomes based on the included studies. The clinical impact of aging on hEDS/HSD remains mostly speculative. IMPLICATIONS FOR PRACTICE: Nurse practitioners, especially those in primary care, should consider that older adults presenting with multimorbidity may have undiagnosed hEDS/HSD. More research is needed to identify symptom patterns and clinical history that may suggest an underlying connective tissue disorder.

Hypermobile Ehlers-Danlos syndrome/hypermobility spectrum disorders in older women: A feasibility study.

INTRODUCTION: Hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders cause joint instability, chronic pain, fatigue and progressive multisystemic dysfunction, increasing symptom burden and decreasing quality of life. Researchers know little about how these disorders progress in women as they age. OBJECTIVE: This research aimed to determine the feasibility of an internet-based study to understand the clinical characteristics, symptom burden and health-related quality of life in older women with symptomatic hypermobility disorders. METHODS: This cross-sectional, internet-based survey studied recruitment methods, suitability and usability of survey instruments and obtained baseline data on women aged 50 and older with hEDS/HSD. Researchers recruited participants from a Facebook group for older adults with Ehlers-Danlos syndrome. Outcome measures included health history, the Multidimensional Health Assessment Questionnaire and the RAND Short Form 36 health survey. RESULTS: Researchers recruited 32 participants from a single Facebook group within 2 weeks. Nearly all participants were satisfied with the survey length, clarity and navigation, with 10 participants providing free-text recommendations for survey improvement. The survey suggests a high symptom burden and poor quality of life in older women with hEDS/HSD. CONCLUSION: The results support the feasibility and importance of a future internet-based comprehensive study about hEDS/HSD in older women.

Needs of Grandparents Raising Grandchildren: A Qualitative Study.

This study identified custodial grandparents' perception of sources of stress that may affect their health and better understand their needs. Findings from this qualitative study are based on thematic analysis of interviews with 10 custodial grandparents. The following themes emerged: 1) grandparents' stress from perceived lack of readiness to care for grandchildren; 2) need for effective communication between and among family members; 3) sufficiency of financial and legal resources; 4) access to community resources, and 5) raising grandchildren reenergizes and revitalizes grandparents' physical and mental health. These findings provide insight into the stressful aspects of the role of raising grandchildren. Understanding stressors affecting custodial grandparents and their grandchildren will help school nurses, social workers, teachers, school administrators and other professionals collaborate to address their challenges.

Longitudinal analysis of aging in place at TigerPlace: Resident function and well-being.

This paper reports on a longitudinal eight-year analysis (2011-2019) of trajectory of function and well-being residents of TigerPlace Aging in Place (AIP) model of care. Residents were routinely assessed using standard health assessment instruments. Average scores from each measure were examined for changes or trends in resident function; decline over time was calculated. Scores for depression, mental health subscale Short Form Health Survey-12 (SF-12) remained stable over time. Mini Mental State Exam declined to mild dementia range (21-24). Physical measures SF-12 physical health subscale, ADLs, and IADLs declined slightly, while fall risk increased over time. When yearly trends in AIP were modeled with a referent group there was no significant worsening of functioning. The length of stay for TigerPlace residents continued to remain stable at nearly 30 months. Residents maintained function in the environment of their choice longer at cost less than nursing homes, and just above residential care cost.

The diagnostic journey in adults with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders.

BACKGROUND: Researchers have identified lengthy diagnosis delays in patients with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders (hEDS/HSD), but the reason for these delays is unclear. OBJECTIVE: This review seeks to synthesize the existing qualitative research about hEDS/HSD to understand the reasons for diagnosis delay. DATA SOURCES: We searched PubMed, Scopus, CINAHL, Google Scholar, and Dissertations and Theses databases for all qualitative studies about hEDS/HSD that mentioned the diagnosis process. A total of 283 studies were retrieved, from which we identified 13 studies to include in this synthesis. CONCLUSIONS: The reviewers identified and organized diagnosis delay themes under four overarching categories: disease, patient, provider, and system. Disease factors included the nature of the symptoms and lack of a confirmatory test. Patient factors included psychological and emotional responses, seeing multiple providers, and receiving multiple diagnoses. Provider factors related to limited knowledge and attitudes. System factors included silo-based health care systems and bureaucratic barriers. IMPLICATIONS FOR PRACTICE: Diagnosis delays result from complex, overlapping, and interacting factors. Nurse practitioners have a critical role in improving care and reducing diagnosis delays in patients with hEDS/HSD. Further research is needed to understand the causes and consequences of diagnosis delays in hEDS/HSD.

Animal-Assisted Interventions for Dementia: A Systematic Review.

Behavioral and psychological symptoms of dementia (BPSD) can be devastating for people who have dementia and their families. More than 5 million Americans are living with dementia, and approximately 97% of these individuals have BPSD, including agitation, aggression, anxiety, depression, apathy, sleep disturbances, wandering, and disinhibition. Animal-assisted interventions (AAI) have increasingly been used to treat these symptoms in individuals with dementia and constitute an optimal nonpharmacological treatment strategy. The current review aims to explore the literature regarding AAI in treating BPSD. Of 3,573 publications reviewed, 15 articles met inclusion criteria. All studies included a type of AAI exploring BPSD within individuals with dementia. The systematic review unveils AAI may be beneficial for those with dementia; however, further research is necessary to address limitations in the existing literature. [Research in Gerontological Nursing, 14(6), 317-324.].

Tracking personalized functional health in older adults using geriatric assessments.

BACKGROUND: Higher levels of functional health in older adults leads to higher quality of life and improves the ability to age-in-place. Tracking functional health objectively could help clinicians to make decisions for interventions in case of health deterioration. Even though several geriatric assessments capture several aspects of functional health, there is limited research in longitudinally tracking personalized functional health of older adults using a combination of these assessments. METHODS: We used geriatric assessment data collected from 150 older adults to develop and validate a functional health prediction model based on risks associated with falls, hospitalizations, emergency visits, and death. We used mixed effects logistic regression to construct the model. The geriatric assessments included were Activities of Daily Living (ADL), Instrumental Activities of Daily Living (IADL), Mini-Mental State Examination (MMSE), Geriatric Depression Scale (GDS), and Short Form 12 (SF12). Construct validators such as fall risks associated with model predictions, and case studies with functional health trajectories were used to validate the model. RESULTS: The model is shown to separate samples with and without adverse health event outcomes with an area under the receiver operating characteristic curve (AUC) of > 0.85. The model could predict emergency visit or hospitalization with an AUC of 0.72 (95% CI 0.65-0.79), fall with an AUC of 0.86 (95% CI 0.83-0.89), fall with hospitalization with an AUC of 0.89 (95% CI 0.85-0.92), and mortality with an AUC of 0.93 (95% CI 0.88-0.97). Multiple comparisons of means using Turkey HSD test show that model prediction means for samples with no adverse health events versus samples with fall, hospitalization, and death were statistically significant (p < 0.001). Case studies for individual residents using predicted functional health trajectories show that changes in model predictions over time correspond to critical health changes in older adults. CONCLUSIONS: The personalized functional health tracking may provide clinicians with a longitudinal view of overall functional health in older adults to help address the early detection of deterioration trends and decide appropriate interventions. It can also help older adults and family members take proactive steps to improve functional health.

Technology for Healthy Independent Living: Creating a Tailored In-Home Sensor System for Older Adults and Family Caregivers.

Sensing technologies hold enormous potential for early detection of health changes that can dramatically affect the aging experience. In previous work, we developed a health alert system that captures and analyzes in-home sensor data. The purpose of this research was to collect input from older adults and family members on how the health information generated can best be adapted, such that older adults and family members can better self-manage their health. Five 90-minute focus groups were conducted with 23 older adults (mean age = 80 years; 87% female) and five family members (mean age = 64; 100% female). Participants were asked open-ended questions about the sensor technology and methods for interacting with their health information. Participants provided feedback regarding tailoring the technology, such as delegating access to family and health care providers, receiving health messages and alerts, interpreting health messages, and graphic display options. Participants also noted concerns and future likelihood of technology adoption. [Journal of Gerontological Nursing, 46(7), 35-40.].

Characteristics of falls and recurrent falls in residents of an aging in place community: A case-control study.

BACKGROUND: Falls and fall-related injuries remain an ongoing and serious health problem in older adults. Many clinical and environmental factors have been implicated in falls and recurrent falls, including sleep disturbances, sensory deficits, balance problems, incontinence, comorbid conditions, and certain categories of medications. We undertook this study to determine if there was an association between these factors and falls or recurrent falls in older adult residents of an aging in place community. METHODS: Our retrospective case-control study compared residents who did and did not fall in an aging in place community, as well as those who experienced recurrent versus single falls in a single year. RESULTS: A total of 50 residents met the criteria for inclusion in this study, with 30 participants (60%) having experienced one or more falls during the observation period. Of the 30 participants who fell, 21 (70%) experienced more than one fall in a single year. Variables associated with falls included marital status and bowel incontinence; variables associated with recurrent falls included self-reported sleep difficulty, balance with sitting to standing and surface-to-surface transfer, use of a walker, and use of antidepressant medications. DISCUSSION: Our study supports the existing nursing research that falls, and recurrent falls are the result of multiple, interrelated factors. Further research is needed into preventative measures for both falls and recurrent falls, particularly in the context of aging in place.

Consensus-based care recommendations for adults with myotonic dystrophy type 1.

PURPOSE OF REVIEW: Myotonic dystrophy type 1 (DM1) is a severe, progressive genetic disease that affects between 1 in 3,000 and 8,000 individuals globally. No evidence-based guideline exists to inform the care of these patients, and most do not have access to multidisciplinary care centers staffed by experienced professionals, creating a clinical care deficit. RECENT FINDINGS: The Myotonic Dystrophy Foundation (MDF) recruited 66 international clinicians experienced in DM1 patient care to develop consensus-based care recommendations. MDF created a 2-step methodology for the project using elements of the Single Text Procedure and the Nominal Group Technique. The process generated a 4-page Quick Reference Guide and a comprehensive, 55-page document that provides clinical care recommendations for 19 discrete body systems and/or care considerations. SUMMARY: The resulting recommendations are intended to help standardize and elevate care for this patient population and reduce variability in clinical trial and study environments.

Randomized Trial of Intelligent Sensor System for Early Illness Alerts in Senior Housing.

OBJECTIVES: Measure the clinical effectiveness and cost effectiveness of using sensor data from an environmentally embedded sensor system for early illness recognition. This sensor system has demonstrated in pilot studies to detect changes in function and in chronic diseases or acute illnesses on average 10 days to 2 weeks before usual assessment methods or self-reports of illness. DESIGN: Prospective intervention study in 13 assisted living (AL) communities of 171 residents randomly assigned to intervention (n=86) or comparison group (n=85) receiving usual care. METHODS: Intervention participants lived with the sensor system an average of one year. MEASUREMENTS: Continuous data collected 24 hours/7 days a week from motion sensors to measure overall activity, an under mattress bed sensor to capture respiration, pulse, and restlessness as people sleep, and a gait sensor that continuously measures gait speed, stride length and time, and automatically assess for increasing fall risk as the person walks around the apartment. Continuously running computer algorithms are applied to the sensor data and send health alerts to staff when there are changes in sensor data patterns. RESULTS: The randomized comparison group functionally declined more rapidly than the intervention group. Walking speed and several measures from GaitRite, velocity, step length left and right, stride length left and right, and the fall risk measure of functional ambulation profile (FAP) all had clinically significant changes. The walking speed increase (worse) and velocity decline (worse) of 0.073 m/s for comparison group exceeded 0.05 m/s, a value considered to be a minimum clinically important difference. No differences were measured in health care costs. CONCLUSIONS: These findings demonstrate that sensor data with health alerts and fall alerts sent to AL nursing staff can be an effective strategy to detect and intervene in early signs of illness or functional decline.

Assisting Older Persons With Adjusting to Hearing Aids.

This intervention study tested the feasibility and initial effect of Hearing Aid Reintroduction (HEAR) to assist persons aged 70 to 85 years adjust to hearing aids. Following this 30-day intervention, hearing aid use increased between 1 and 8 hr per day with 50% of participants able to wear them for at least 4 hr. Hearing aid satisfaction improved from not satisfied to satisfied overall. The study demonstrated that HEAR is feasible and could improve hearing aid use of a substantial number of older persons who had previously failed to adjust to their hearing aids and had given up. However, further testing among a larger and more diverse population is needed to better understand the effectiveness and sustainability of the intervention.

Enhanced registered nurse care coordination with sensor technology: Impact on length of stay and cost in aging in place housing.

BACKGROUND: When planning the Aging in Place Initiative at TigerPlace, it was envisioned that advances in technology research had the potential to enable early intervention in health changes that could assist in proactive management of health for older adults and potentially reduce costs. PURPOSE: The purpose of this study was to compare length of stay (LOS) of residents living with environmentally embedded sensor systems since the development and implementation of automated health alerts at TigerPlace to LOS of those who are not living with sensor systems. Estimate potential savings of living with sensor systems. METHODS: LOS for residents living with and without sensors was measured over a span of 4.8 years since the implementation of sensor-generated health alerts. The group living with sensors (n = 52) had an average LOS of 1,557 days (4.3 years); the comparison group without sensors (n = 81) was 936 days (2.6 years); p = .0006. Groups were comparable based on admission age, gender, number of chronic illnesses, SF12 physical health, SF12 mental health, Geriatric Depression Scale (GDS), activities of daily living, independent activities of daily living, and mini-mental status examination scores. Both groups, all residents living at TigerPlace since the implementation of health alerts, receive registered nurse (RN) care coordination as the standard of care. DISCUSSION: Results indicate that residents living with sensors were able to reside at TigerPlace 1.7 years longer than residents living without sensors, suggesting that proactive use of health alerts facilitates successful aging in place. Health alerts, generated by automated algorithms interpreting environmentally embedded sensor data, may enable care coordinators to assess and intervene on health status changes earlier than is possible in the absence of sensor-generated alerts. Comparison of LOS without sensors TigerPlace (2.6 years) with the national median in residential senior housing (1.8 years) may be attributable to the RN care coordination model at TigerPlace. Cost estimates comparing cost of living at TigerPlace with the sensor technology vs. nursing home reveal potential saving of about $30,000 per person. Potential cost savings to Medicaid funded nursing home (assuming the technology and care coordination were reimbursed) are estimated to be about $87,000 per person. CONCLUSIONS: Early alerts for potential health problems appear to enhance the current RN care coordination care delivery model at TigerPlace, increasing LOS for those living with sensors to nearly twice that of those who did not. Sensor technology with care coordination has cost saving potential for consumers and Medicaid.

The continued success of registered nurse care coordination in a state evaluation of aging in place in senior housing.

Older adults prefer to age in place, remaining in their home as their health care needs intensify. In a state evaluation of aging in place (AIP), the University of Missouri Sinclair School of Nursing and Americare System Inc, Sikeston, MO, developed an elder housing facility to be an ideal housing environment for older adults to test the AIP care delivery model. An evaluation of the first 4 years (2005-2008) of the AIP program at TigerPlace (n = 66) revealed that the program was effective in restoring health and maintaining independence while being cost-effective. Similar results evaluating the subsequent 4 years (2009-2012) of the program (N = 128) revealed positive health outcomes (fall risk, gait velocity, Functional Ambulation Profile, handgrips, Short-Form 12 Physical Health, Short-Form 12 Mental Health, and Geriatric Depression Scale); slightly negative activities of daily living, independent activities of daily living, and Mini-Mental State Examination; and positive cost-effectiveness results. Combined care and housing costs for any resident who was receiving additional care services and qualified for nursing home care (n = 44) was about $20,000 less per year per person than nursing home care. Importantly, residents continued to live in private apartments and were encouraged to be as independent as possible through the end of life.

The cancer pain practice index: a measure of evidence-based practice adherence for cancer pain management in older adults in hospice care.

Various clinical practice guidelines addressing pain assessment and management have been available for several years that pertain, at least to some extent, to older patients with cancer. Nonetheless, systematic evaluations or methodologically sound studies of adherence to pain management practice guidelines within Medicare-certified hospice programs are lacking. As part of a larger translating-research-into-practice pain improvement study involving older patients with cancer in hospice programs, we recognized the need to create a valid and reliable tool that can facilitate critical evaluation of hospice medical records for nurse and physician adherence to pain management guidelines to create a consolidated score for comparative and quality improvement purposes. We report the process used to create this tool, named the Cancer Pain Practice Index, and a guide to its use.