D. Living with Complexity: Aging, Chronic Conditions, and Symptom Experiences Across the Lifespan Person-centered insights into management, adaptation, and quality of life
A Novel Telephone Coaching Program Improved Incontinence in Community-Dwelling Frail Older Adults: Results of the Incontinence Helping Others at Home (Incon@Home) Implementation Study presented by Kristine Talley
Objectives: Frail, community-dwelling older adults face serious complications due to urinary incontinence (UI) alongside significant barriers to care. Remote, conservative self-management programs may improve outcomes for this vulnerable population. Consequently, this study evaluated the implementation, adoption, and effectiveness of Incon@Home, a telephone coaching intervention delivered by incontinence product service representatives.
Design: Single-group pretest-posttest implementation study guided by the NIH Dissemination and Implementation Science Framework
Setting and Participants: 82 frail community-dwelling Medicaid enrollees aged 55+ with UI
Methods: The 9-month intervention included 16 coaching sessions covering conservative management strategies. Patient-reported outcomes included UI severity (ICIQ-SF), incontinence-related quality of life (IIQ-7), general quality of life (EQ-5D-5L), falls, urinary tract infections (UTIs), dermatitis, pressure ulcers, and program satisfaction. Baseline and 9-month outcomes were compared using paired statistical analyses. Delivery evaluation focused on intervention implementation and fidelity, participant adoption and engagement, and program costs.
Results: Among 82 enrolled participants (mean age 66.5; 91% female; 72% frail), 50% completed the nine-month intervention. Statistically significant improvements occurred in UI severity (ICIQ-SF: 12.9 to 9.8, p < 0.001), incontinence-related QoL (IIQ-7: 51.3 to 43.9, p = 0.011), and general QoL (EQ-5D-5L: 0.43 to 0.54, p < 0.001). There were no statistically significant changes in pressure ulcers, dermatitis, falls, or UTIs. Satisfaction was high, with 98% of completers being "completely satisfied." Interventionist fidelity was high; three staff completed 1,084 calls (0.58 FTE). Overall satisfaction was high, with 98% reporting satisfaction and 66% reporting perceived improvement in symptoms. Active participants completed 63% of prescribed sessions, with 89% successfully demonstrating knowledge through teach-back.
Conclusion: Incon@Home provided accessible, patient-centered support for frail, community-dwelling older adults with UI and was associated with meaningful improvements in symptoms and quality of life. Despite high attrition, findings support the feasibility and potential value of remote coaching interventions for incontinence management in a medically complex population.
Dyadic Satisfaction and Congruence in LVAD Management: Preliminary Findings presented by Samantha Conley
Background: For some individuals with advanced heart failure, a left ventricular assist device (LVAD) is surgically implanted to aid the failing heart. Patients designate a care partner (caregiver) to assist with LVAD self-management tasks. Little is known about how LVAD care partners and patients share LVAD management tasks. The study aim was to describe how LVAD care partners and patients share LVAD management.
Methods: We are currently conducting a longitudinal observational study and are recruiting LVAD care partner and patient dyads. Measures include the Dyadic Symptom Management Type Scale (adapted to LVAD) and the LVAD Self-Care Behavior Scale: Patient and Care Partner from both care partners and patients. We computed descriptive statistics.
Results: We have recruited 13 dyads [Care partner: Mean age = 62.0 (SD 10.2), 12 (92.3%) female, 12 (92.3%) White, and 12 (92.3%) married/partnered to LVAD patient; Patient: Mean age = 65.9 (SD 8.7), 1 (7.7%) female, and 11 (84.6%) White]. Twelve dyads completed the baseline survey. Within dyads, most (N = 8, 66.7%) had incongruent dyadic LVAD management types. Between care partner and patient groups, the largest incongruencies were on who checks the LVAD patient for symptoms (e.g., for stroke, fatigue, shortness of breath). Most patients reported that they check for symptoms, while most care partners reported that these were shared. Most patients (n = 9, 75.0%) but few care partners (n = 3, 25.2%) were extremely satisfied with the LVAD management arrangement.
Conclusions: In this ongoing study, we found that most LVAD patients and care partners had incongruent LVAD management styles and did not agree on who takes the lead on self-management behaviors. Few care partners were extremely satisfied with the LVAD management arrangement. Future work will examine how dyadic congruence on LVAD management impacts LVAD outcomes and care partner burden and quality of life.
Early Trajectories of Symptoms in Adults with a New Ileostomy: A Prospective Longitudinal Observational Study presented by Akiko Okano
Background: Little is known about how symptoms and functioning change after ostomy surgery, limiting patient preparation for this challenging surgical recovery.
Purpose: To describe trajectories of pain, fatigue, sleep, depression, anxiety, and physical and social functioning in adults over the first 3 months after ileostomy surgery.
Methods: We conducted a prospective longitudinal observational study. Adults aged 18-65 undergoing new ileostomy surgery were enrolled at an academic medical center from 08/2024 to 03/2025. Symptoms and functioning were measured using the Patient-Reported Outcomes Measurement Information System (PROMIS)-29. Data were collected at perioperative baseline, 1, 2, and 3 months after ileostomy surgery. We used descriptive statistics. A change of ≥5 points on the PROMIS-29 subscales indicated a clinically important difference.
Results: Among 26 adults [mean age = 42.9 (SD 11.3), 14 (53.8%) female, 23 (88.5%) White], 10 (38.5%) had ileostomy surgery for cancer, 10 (38.5%) for inflammatory bowel disease, 3 (11.5%) for familiar adenomatous polyposis, 2 (7.7%) for intestinal dysmotility, and 1 (3.8%) for diverticulitis. At perioperative baseline, the most severe mean symptom scores were pain interference (60.5, SD 5.6), anxiety (56.2, SD 7.6), fatigue (55.5, SD 10.2), and sleep disturbance (53.3, SD 6.9). Pain interference (Δ = 11.3) and anxiety (Δ = 6.5) improved over 3 months. Little change was seen in fatigue (Δ = 2.2) and sleep disturbance (Δ = .6). Physical functioning improved (Δ = -4.8) but the mean score remained <50 (44.0, SD 8.9), indicating worse physical functioning than the general population. Social functioning improved (Δ = -4.9) to a mean score >50 (52.3, SD 9.0).
Conclusion: People with ileostomies experienced persistent fatigue, sleep disturbance, and impaired physical functioning in the early recovery period. Research is needed to understand how persistent symptoms impact long-term outcomes and ostomy adjustment.
Whole Person Insights Into Women’s Health: Examining Strengths, Challenges, and Needs Across the Menopause Continuum presented by Robin Austin
Background: The menopause transition is a multidimensional, whole person experience that shapes women’s health, function, and quality of life across adulthood. Yet much of women’s health research remains biomedical and episodic, obscuring early, modifiable challenges that emerge well before menopause and limiting opportunities for prevention. Midlife represents a critical window for earlier intervention to support healthy aging. Consumer-generated health data offer a scalable approach to capturing women’s lived experiences, strengths, and unmet needs across the menopause continuum.
Methods: This retrospective observational study analyzed de-identified consumer-generated data from the MyStrengths+MyHealth (MSMH) digital assessment, a whole person tool grounded in the Omaha System. Women were categorized as reproductive-aged (25–44), midlife (45–64), or postmenopausal (65+) using age as a proxy for menopausal transition. Self-reported strengths, challenges, and needs across environmental, psychosocial, physiological, and self-care domains were compared using descriptive and inferential statistics.
Results: Among 1,737 women, postmenopausal and midlife participants reported significantly higher strengths than reproductive-aged women (p<0.001). In contrast, reproductive-aged women reported the greatest burden of challenges and needs across the widest range of health concepts (p<0.001), indicating earlier and more diffuse unmet needs than traditionally recognized. Exercise was the most common challenge across all groups. Midlife women generated the highest overall volume of needs at the population level, while postmenopausal women reported fewer challenges and needs.
Conclusion: Whole person, consumer-generated data reveal that substantial challenges and unmet needs emerge well before menopause, underscoring the need to shift women’s health strategies upstream. Earlier, strengths-based, and personalized interventions during the midlife may be essential to promote resilience, extend health, and support healthier aging trajectories for women. This presentation can also discuss current research to refine the MSMH application toward midlife women and perimenopause-menopause symptoms.