Improving age-friendly advance care planning in primary care: Outcomes from a Pacific Northwest learning collaborative.

BACKGROUND: Advance care planning (ACP) is the process of having conversations with patients to ensure preferences are known and support patient healthcare goals. ACP and the Age-Friendly Health Systems (AFHS) Initiative's, "What Matters," are synergistic approaches to patient-centered conversations. Implementation and measurement of ACP in primary care (PC) are variables in quality and consistency. We examined whether participation in an ACP learning collaborative (LC) would improve knowledge and ability to conduct ACP discussions and increase the frequency of documented ACP in participating practices. METHODS: The WWAMI (Washington, Wyoming, Alaska, Montana, and Idaho) region Practice and Research Network (WPRN) and the Northwest Geriatrics Workforce Enhancement Center collaboratively organized a 9-month virtual LC. It consisted of 4 synchronous, 1.5-h sessions, technical support, and a panel of ACP experts. A Wilcoxon rank sum test assessed differences in knowledge from a pre-post survey. Documentation of ACP in the EHR was collected after at least one plan-do-study-act cycle. RESULTS: We enrolled 17 participants from 6 PC practices (3 hospital-affiliated; 3 Federally Qualified Health Centers) from the WPRN. Two practices did not complete all LC activities. There was a trend toward increased ACP knowledge and skills overall especially in having discussions patients and families (pre-mean 2.9 [SD = 0.7]/post-mean 4.0[SD = 1.1], p < 0.05). 4/6 practices observed an increase in EHR documentation post-collaborative (median 16.3%, IQR 1.3%-36.9%). CONCLUSIONS: The LC increased PC providers knowledge and skills of ACP and AFHS's What Matters, reported ACP EHR documentation, and contributed to practice change.

A Feasibility Study of Primary Care Liaisons: Linking Older Adults to Community Resources.

INTRODUCTION: Programs and services available through the aging services network can help community-dwelling older adults to age in place but are often not discussed in routine primary care. The primary care liaison was developed as a novel integration intervention to address this disconnect. METHODS: Employed by an Area Agency on Aging, primary care liaisons performed outreach to primary care with the goal of raising awareness of community-based programs, resources, and services available to older adults and their caregivers and facilitating referrals. The evaluation of the primary care liaison model, conducted from December 2015 to February 2019, used the Reach, Effectiveness, Adoption, Implementation, Maintenance framework and assessed reach (number of clinics contacted), adoption (number of referrals to the Area Agency on Aging), implementation (number of follow-up contacts with a practice), and effectiveness (proportion of referrals reached and provided relevant resources). RESULTS: The primary care liaisons contacted a median of 18.5 clinics per month (IQR=15-31). Primary care referrals averaged >100 per month, and referrals increased over time. Successful follow-up outreach visits had a median of 3 (IQR=2-10), and follow-up contacts had a median of 3 (IQR=1-7) per practice. Three quarters of caregivers for people with dementia reached by Area Agency on Aging staff were provided with information about relevant resources. CONCLUSIONS: The primary care liaison model is feasible, fosters ongoing interactions between primary care and Area Agencies on Aging, and connects older adults and their caregivers to relevant programs and services. Adoption of the primary care liaison model by other Area Agencies on Aging across the U.S. may help further the vision of optimized health and well-being of older adults.

Project ECHO-Geriatrics: Training Future Primary Care Providers to Meet the Needs of Older Adults.

BACKGROUND: Geriatrics training is essential for future primary care providers. The Extension for Community Healthcare Outcomes (ECHO) model improves access to specialty care via case-based videoconferencing, but Project ECHO has not previously been designed to target residents. OBJECTIVE: We designed Project ECHO-Geriatrics to deliver geriatrics education to primary care trainees using the ECHO model and evaluated self-rated geriatrics competency of trainees from the University of Washington Family Medicine Residency Network programs who participated between January 2016 and March 2017. METHODS: We assessed outcomes of Project ECHO-Geriatrics through anonymous surveys. Participants rated didactics, case discussions, and geriatrics-specific knowledge before and after sessions on a 5-point scale (1, low, to 5, high). Participants were asked whether they planned to do anything differently in their practice and, if yes, to describe this change. RESULTS: Fifteen sessions were held with 204 unique participants from 12 sites, with an average of 28 (range, 13-41) participants per session. From the 9 of 29 (31%) Family Medicine Residency Network programs that enrolled, 63% percent (116 of 184) of eligible residents attended. Sessions were highly rated (89% of responses were 4 or 5). Self-reported geriatrics-specific knowledge increased significantly (before 3.3 [SD = 0.89] versus after 4.0 [SD = 0.60], P < .001). Sixty-five percent (118 of 181) of participants reported plans to change their practice. CONCLUSIONS: Project ECHO-Geriatrics is an innovative, feasible way to train the future primary care workforce in geriatrics and grow the capacity to provide high-quality care to older adults.

Bouncing back again, and again: a qualitative study of resilience in people with multiple sclerosis.

Purpose The purpose of this study was to describe the meaning of resilience, factors facilitating resilience and barriers to resilience, from the perspective of persons with multiple sclerosis (MS), their care partners and community stakeholders. Method We conducted four focus groups: two with middle-aged (36-62 years) individuals with MS [one with men (n = 6) and one with women (n = 6)], one for partners of individuals with MS (n = 11) and one with community stakeholders serving people with MS (n = 9). We asked participants to describe what resilience means to them, what factors facilitate resilience and what barriers to resilience they perceive. We analyzed the focus group transcripts for emerging themes and sub-themes. Results Participants found it difficult to generate a concise definition of resilience, but they generated evocative descriptions of the concept. Psychological adaptation, social connection, life meaning, planning and physical wellness emerged as facilitators of resilience. Resilience depletion, negative thoughts and feelings, social limitations, social stigma and physical fatigue emerged as barriers to resilience. Conclusion The unpredictable nature of MS can present unique challenges to resilient adjustment, especially during middle age. However, several factors can contribute to resilience and quality of life, and these factors are amenable to intervention. Implications for Rehabilitation Resilience is the capacity to bounce back and thrive when faced with challenges. People with MS develop resilience through psychological adaptation, social connection, life meaning, planning ahead and physical wellness. Barriers to resilience with MS include burnout, negative thoughts and feelings, social difficulties, stigma and fatigue. Interventions should address both individual and social factors that support resilience, such as promoting positive thinking, planning and engagement in meaningful activities.

Efficacy of a Telephone-Delivered Self-Management Intervention for Persons With Multiple Sclerosis: A Randomized Controlled Trial With a One-Year Follow-Up.

OBJECTIVE: To evaluate the efficacy of a telephone-delivered self-management intervention for fatigue, pain, and depression in adults with multiple sclerosis (MS). DESIGN: Single-center, randomized (1:1), single-blind (outcome assessors), parallel-group trial with a primary endpoint of posttreatment (9-11 wk postrandomization) and long-term follow-up at 6 and 12 months. SETTING: Telephone-delivered across the United States. PARTICIPANTS: Adults with MS (N=163) with fatigue, chronic pain, and/or moderate depressive symptoms (age range, 25-76 y). INTERVENTIONS: Eight-week individual telephone-delivered self-management intervention (T-SM) (n=75) versus an 8-week individual telephone-delivered MS education intervention (T-ED) (n=88). MAIN OUTCOME MEASURES: The primary outcome was the proportion who achieved a ≥50% decrease in 1 or more symptoms-fatigue impact, pain interference, and/or depression severity. Secondary outcomes included continuous measures of pain, fatigue impact, depression, self-efficacy, activation, health-related quality of life, resilience, and affect. RESULTS: For our primary outcome, 58% of those in the T-SM group and 46% of those in the T-ED group had a ≥50% reduction in 1 or more symptoms; this difference was not statistically significant (odds ratio, 1.50; 95% confidence interval, .77-2.93; P=.238). Participants in both groups significantly improved from baseline to posttreatment in primary and secondary outcome measures (P<.05). T-SM participants reported significantly higher treatment satisfaction and therapeutic alliance and greater improvements in activation, positive affect, and social roles. Improvements were generally maintained at 6 and 12 months. CONCLUSIONS: Both interventions resulted in short- and long-term, clinically meaningful benefits. The study demonstrated that the telephone is an effective method for engaging participants in care and extending the reach of rehabilitation for individuals with MS.

Falls among adults aging with disability.

OBJECTIVE: To investigate the prevalence of and risk factors for falling among individuals aging with multiple sclerosis (MS), muscular dystrophy (MD), postpolio syndrome (PPS), and spinal cord injury (SCI). DESIGN: Cross-sectional survey data from 2009 to 2010 were analyzed. We used forward logistic regression models to examine whether risk factors such as age, sex, mobility level, years since diagnosis, vision, balance, weakness, number of comorbid conditions, and physical activity could distinguish participants who reported falling from those who did not. SETTING: Surveys were mailed to community-dwelling individuals who had 1 of 4 diagnoses (MS, MD, PPS, or SCI). The survey response rate was 91%. PARTICIPANTS: A convenience sample of community-dwelling individuals (N=1862; age, 18-94y) with MS, MD, PPS, or SCI in the United States. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: Self-reported fall within the last 6 months. RESULTS: Fall prevalence for people with MS (54%), MD (70%), PPS (55%), and SCI (40%). Across all 4 groups, fall rates peaked in middle age (45-64y) and among people with moderate mobility limitations. Seven risk factors differentiated participants who fell from those who did not: mobility level, imbalance, age, curvilinear age (age(2)), number of comorbid conditions, duration of diagnosis, and sex. The models differed across diagnostic groups. CONCLUSIONS: People aging with long-term physical disabilities experience unique challenges that affect their risk of falls. A better understanding of the frequency, severity, and risk factors of falls across diagnostic groups is needed to design and implement customized, effective fall prevention and management programs for these individuals.

Future directions of multiple sclerosis rehabilitation research.

Multiple sclerosis continues to present a host of rehabilitation challenges, specifically the impact of secondary "hidden" conditions on quality of life, participation, and employment. To discuss the current state of rehabilitation research and direct future research endeavors, a state of the science conference was held in November 2010 in Alexandria, Virginia. The conference was presented by the University of Washington's Multiple Sclerosis Rehabilitation Research and Training Center and focused on the current state of research into secondary conditions, outcomes measurement, employment, and the utility of psychotherapeutic interventions. This article discusses the details and recommendations of this conference.

Effects of pain and fatigue on physical functioning and depression in persons with muscular dystrophy.

BACKGROUND: Pain and fatigue are common symptoms experienced by persons with muscular dystrophy (MD). However, it is unclear from previous studies whether pain and fatigue have independent effects on physical functioning and depression, and whether age moderates the relationship of pain and fatigue with physical functioning and depression. OBJECTIVE: This cross-sectional study aimed to describe the relationship of pain and fatigue to physical functioning and depression in persons 20-89 years old with MD. METHOD: A convenience sample of 332 individuals with MD completed a questionnaire that included measures of physical functioning (PROMIS item bank items), depression (PHQ-9), pain intensity (0-10 NRS), and fatigue (0-10 NRS). RESULTS: Pain and fatigue were each independently associated with physical functioning and depression. Depressive symptoms were most severe among middle-aged participants (45-64 years old) relative to older and younger participants. Physical functioning had a negative relationship with chronological age. CONCLUSIONS: Symptoms of pain and fatigue are significantly and independently related to physical functioning and depression in persons with MD. Research is needed to determine if treatments that target both pain and fatigue in patients with MD have more beneficial effects than treatments that target only one of these symptoms.

Body mass index and waist circumference in persons aging with muscular dystrophy, multiple sclerosis, post-polio syndrome, and spinal cord injury.

BACKGROUND: Body mass index (BMI) and waist circumference (WC) are well-understood in the general population, but are not adequately understood among persons with disabilities. OBJECTIVE: To describe and compare BMI and WC among individuals with muscular dystrophy (MD), multiple sclerosis (MS), post-polio syndrome (PPS), and spinal cord injury (SCI). BMI scores were also compared to normative data of the U.S. population, with consideration for age, sex, and mobility limitations. METHODS: Persons with MD (n = 339), MS (n = 597), PPS (n = 443), and SCI (n = 488) completed postal surveys that included self-reported BMI and WC data. NHANES data were used to compare the current sample with a representative US sample. RESULTS: Participants with PPS had higher BMI than participants with MD, MS, and SCI. In addition, participants with MS had significantly higher BMI relative to participants with SCI. BMI was significantly positively associated with age, years since diagnosis, mobility, and interactions of some of these factors. Relative to the general population, BMI was lower in MD, MS, and SCI across age groups, as well as in men with PPS and women ages 60-74 years with PPS. No significant differences were identified between MD, MS, PPS, and SCI in WC. CONCLUSIONS: The presence of group differences in BMI and absence of group differences in WC suggests that BMI may not accurately represent health risk in SCI, MD, and possibly MS, because of biasing elements of the conditions, such as changes in body composition and mobility limitations.

Pain and fatigue in persons with postpolio syndrome: independent effects on functioning.

OBJECTIVES: To better understand the importance of pain and fatigue in relation to functioning, and to investigate the role that age plays in these relationships in individuals with postpolio syndrome (PPS). DESIGN: Cross-sectional survey. SETTING: Community-based survey. PARTICIPANTS: Convenience sample of 446 individuals with PPS. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Physical functioning (Patient Reported Outcomes Measurement Information System Physical Functioning item bank items), psychological functioning (Patient Health Questionnaire-9), pain intensity (0-10 numerical rating scale [NRS]), and fatigue (0-10 NRS). RESULTS: Pain and fatigue make independent contributions to the prediction of physical and psychological functioning. Depression was more severe in the middle-aged (≤64y) group than in the young-old (65-74y) or middle-old to oldest (≥75y) groups, although the associations between pain and fatigue and both physical and psychological functioning are similar across all age cohorts. CONCLUSIONS: Complaints of pain or fatigue in patients with PPS who are older or elderly should not be attributed "merely" to the process of aging. The findings also support the need for clinical trials to develop and evaluate interventions that may help patients with PPS function better by treating pain and fatigue, as well as the negative effects that these symptoms can have on functioning.

A novel WFS1 mutation in a family with dominant low frequency sensorineural hearing loss with normal VEMP and EcochG findings.

BACKGROUND: Low frequency sensorineural hearing loss (LFSNHL) is an uncommon clinical finding. Mutations within three different identified genes (DIAPH1, MYO7A, and WFS1) are known to cause LFSNHL. The majority of hereditary LFSNHL is associated with heterozygous mutations in the WFS1 gene (wolframin protein). The goal of this study was to use genetic analysis to determine if a small American family's hereditary LFSNHL is linked to a mutation in the WFS1 gene and to use VEMP and EcochG testing to further characterize the family's audiovestibular phenotype. METHODS: The clinical phenotype of the American family was characterized by audiologic testing, vestibular evoked myogenic potentials (VEMP), and electrocochleography (EcochG) evaluation. Genetic characterization was performed by microsatellite analysis and direct sequencing of WFS1 for mutation detection. RESULTS: Sequence analysis of the WFS1 gene revealed a novel heterozygous mutation at c.2054G>C predicting a p.R685P amino acid substitution in wolframin. The c.2054G>C mutation segregates faithfully with hearing loss in the family and is absent in 230 control chromosomes. The p.R685 residue is located within the hydrophilic C-terminus of wolframin and is conserved across species. The VEMP and EcochG findings were normal in individuals segregating the WFS1 c.2054G>C mutation. CONCLUSION: We discovered a novel heterozygous missense mutation in exon 8 of WFS1 predicting a p.R685P amino acid substitution that is likely to underlie the LFSNHL phenotype in the American family. For the first time, we describe VEMP and EcochG findings for individuals segregating a heterozygous WFS1 mutation.

Validation of the Ménière's Disease Patient-Oriented Symptom-Severity Index.

OBJECTIVE: To validate a disease-specific, health-related quality-of-life instrument for people with active, unilateral, cochleovestibular Ménière's disease (MD). DESIGN: Prospective, blinded, randomized cohort study using a 16-item instrument, the Ménière's Disease Patient-Oriented Symptom-Severity Index (MDPOSI), version 2. SETTING: Four clinical sites, including 3 university hospitals and 1 private practice. PARTICIPANTS: Sixty-one adult participants in a clinical trial of a new treatment modality (the Meniett device) at 4 medical centers. INTERVENTION: The MDPOSI was administered at baseline and at 2 and 4 months after the use of the Meniett device or the placebo. MAIN OUTCOME MEASURES: Each item, domain, and overall MDPOSI score was compared with self-reported cumulative frequency of definitive attacks of vertigo at baseline and 2 and 4 months later. RESULTS: The MDPOSI global score, domain scores, and 13 of 16 items were significantly associated with the frequency of vertigo (gold standard) as noted on the daily symptom report card. CONCLUSIONS: The MDPOSI is a valid and reliable instrument to evaluate the impact of MD on patients' disease-related quality of life, and it is responsive to change in the status of the disorder. The MDPOSI is suitable for use in clinical practice and clinical research in people with MD.