Supporting In-Home Caregivers in Symptom Assessment of Frail Older Adults with Serious Illness: A Pilot Study.

Background: Many older adults with serious illness who depend on others for care have symptoms that are difficult to manage. Supporting caregivers in symptom assessment (SA) may reduce suffering. Objective: Pilot an SA-Toolkit for caregivers to assess older adults' symptoms at home. Design: Pilot study. Setting/Subjects: English-speaking patients ≥65 years of age and their caregivers from a home-based geriatrics program in San Francisco. Measurements: With multiple stakeholder input, we created a SA-Toolkit consisting of illustrations depicting symptoms, validated Faces Scale, and easy-to-use tracking system with phone numbers of family/friends/clinicians. At baseline and one week, we assessed change in patients' symptoms and caregivers' self-efficacy with SA (5-point scale) using Wilcoxon signed-rank tests. We assessed acceptability at one week. Results: Eleven patient/caregiver dyads participated in the study. Patients were 84.7 years old (SD 5.7), 81.8% women, 27.3% non-white. From baseline to one week, mean number of symptoms decreased (3.7 [1.5] to 2.6 [1.8], p = 0.03). Specifically, patients with pain decreased from 63.6% to 36.4%, anxiety 54.6% to 18.2%, depression 45.5% to 27.3%, and loneliness 36.4% to 18.2%. Caregiver self-efficacy increased (4.6 [0.3] to 4.8 [0.3], p = 0.09). Patients found the symptom illustrations easy to use (8.7 on 10-point scale), but the Faces Scale less so (7.3/10) because it provided "too many choices." Caregivers liked the SA-Toolkit because it was easy to use; nearly all (10/11, 90%) would recommend it to others. Conclusions: The SA-Toolkit resulted in decreased symptom burden among patients and higher caregiver self-efficacy in SA. The SA-Toolkit is acceptable and may help reduce suffering in frail, older patients

Engaging Diverse Older Adults With Cognitive Impairment and Caregivers in Advance Care Planning

IntroductionEngaging patients with cognitive impairment in advance care planning (ACP), including completing advance directives and naming health care proxies, before they lose decision-making capacity is important.MethodsWe determined the feasibility of the PREPAREforYourCare.org ACP program among 20 diverse older adults with mild-to-moderate cognitive impairment and their caregivers in a 1-week, pre-post pilot. We examined ease-of-use, satisfaction, and feasibility using validated scales, and change in ACP Engagement scores, including knowledge, contemplation, self-efficacy, and readiness subscales (5-point scales), from baseline to 1-week.ResultsParticipants were on average 70 years old (SD=9.0), 45% Spanish-speaking, 60% had limited health literacy, and 15% felt comfortable using the internet. Patients and caregivers rated PREPARE a mean of 8.6 (SD=1.6) and 9.4 (SD=1.1) on the 10-point ease-of-use scale, 4.7 (SD=0.4) and 4.7 (SD=0.3) on the 5-point satisfaction scale, and 4.9 (SD=0.4) and 4.8 (SD=0.6) on the 5-point feasibility scale, respectively. ACP engagement scores increased for 16 of 20 (80%) patients (P=0.03) and 16 of 20 (80%) caregivers (P=0.18). Caregivers experienced increased knowledge (3.8 to 4.7, P=0.002) and self-efficacy (3.6 to 4.5, P=0.034) for ACP.DiscussionThe PREPARE website was feasible and may facilitate ACP engagement among diverse older adults with cognitive impairment and their caregivers

A Toolkit for Community-Based, Medicaid-Funded Case Managers to Introduce Advance Care Planning to Frail, Older Adults: A Pilot Study.

Background: Advance care planning (ACP) among frail, older adults receiving in-home care is low. Leveraging case managers to introduce ACP may increase engagement. Objective: Pilot an ACP-Toolkit for case managers and their clients. Design: Feasibility pilot of an ACP-Toolkit for case managers to introduce ACP and the PREPAREforYourCare.org website and advance directives. Setting/Subjects: Case managers from four local aging service organizations who referred English-speaking clients ≥55 years old. Measurements: Using validated surveys (five-point Likert scales), we assessed changes in case managers' attitudes, confidence, and readiness to facilitate ACP and clients' readiness to engage in ACP from baseline to follow-up (one-week) using Wilcoxon signed-rank tests. Results: We enrolled 9 case managers and 12 clients (median age 69 [standard deviation 8], 75% minority race/ethnicity). At follow-up, case managers' confidence increased (3.2 [0.7] to 4.2 [0.7]; p = 0.02), and clients' readiness increased (2.8 [1.5] to 3.4 [1.4]; p = 0.06). All case managers agreed the Toolkit was easy to use, helped start ACP conversations, and would recommend it to others. All clients found the Toolkit easy to understand and were comfortable with case managers using it. Nearly all clients (92%) would recommend it to others. Suggestions for improvement included offering the Toolkit in other languages and disseminating it in clinical and community settings. Conclusions: The ACP-Toolkit resulted in higher case manager confidence in facilitating ACP and client readiness to engage in ACP, and usability was high. A brief ACP-Toolkit may be a feasible solution to increase ACP engagement among frail, older adults receiving in-home care

Brief English and Spanish Survey Detects Change in Response to Advance Care Planning Interventions.

ContextThe validated 82-item Advance Care Planning (ACP) Engagement Survey measures a broad range of ACP behaviors but is long.ObjectivesDetermine whether shorter survey versions (55-item, 34-item, 15-item, 9-item, and 4-item versions) can detect similar change in response to two well-validated ACP interventions and provide practical effect size information.MethodsWe assessed ACP engagement for 986 English- and Spanish-speaking adults in a randomized trial of PREPARE vs. an advance directive-only study arms. The survey was administered at baseline, one week, three months, six months, and 12 months. We calculated mean change scores from baseline to follow-up time points by study arm, intraclass correlation coefficients of change scores between the 82-item survey with shorter versions, and within-group and between-group effect sizes of the mean change scores.ResultsShorter survey versions were able to detect within-group and between-group changes at all time points. Within-group intraclass correlations of the 82-item to shorter versions were high (0.78-0.97), and the amount of between-group differences was comparable using all survey versions. Twelve-month within-group effect sizes ranged narrowly from 0.76 to 1.05 for different survey versions in the PREPARE arm and from 0.44 to 0.64 for the advance directive-only version. Between-group effect sizes ranged narrowly from 0.24 to 0.30 for different survey versions. Results were similar when stratified by English and Spanish speakers.ConclusionShorter versions of the ACP Engagement Survey were able to detect within-group and between-group changes comparable with the 82-item version and can be useful for efficiently and effectively measuring ACP engagement in research and clinical settings

The PREPARE for Your Care program increases advance care planning engagement among diverse older adults with cancer

BACKGROUND: Advance care planning (ACP) is low among older adults with cancer. In secondary analysis of randomized trial data, we compared the efficacy of the PREPARE website plus easy-to-read advance directive (AD) versus AD-only among older adults with and without cancer. METHODS: Safety-net primary care patients in San Francisco were included if they were ≥55 years old, English- or Spanish-speaking, and had ≥2 chronic conditions. We determined cancer diagnoses using ICD-9/10 codes. The primary outcome was new ACP documentation in the medical record at 15 months; secondary outcomes were self-reported ACP engagement, ease-of-use, satisfaction, and depression/anxiety. We used mixed effects logistic and linear regression adjusted for prior ACP, health literacy, and clinician, including a cancer interaction term. RESULTS: Of 986 participants, 220 (22%) had cancer; mean age was 63 (SD 6), 61% were women, 81% minority race/ethnicity, 45% Spanish-speaking, 39% had limited health literacy, 27% had prior ACP. New ACP documentation was higher in the PREPARE versus AD-only arm among participants with cancer (62% versus 43%; P=0.01) and without cancer (38% versus 28%; P=0.01), as was ACP engagement in both arms (P<0.001), with no interactions by cancer. Ease-of-use and satisfaction were high, and depression/anxiety were low, with no differences by study arm or by cancer/no cancer. CONCLUSIONS: PREPARE plus an easy-to-read AD increased ACP documentation and engagement among diverse, older adults with cancer more than an AD alone, with no increase in depression or anxiety between study arm or by cancer. PREPARE may help decrease ACP disparities among cancer patients

Empowering patients with the PREPARE advance care planning program results in reciprocal clinician communication

BackgroundThe patient-directed PREPAREforYourCare.org program empowers patients to participate in advance care planning (ACP) discussions with clinicians. Our goal was to determine whether PREPARE could reciprocally increase clinician ACP communication.MethodsIn a secondary analysis of two trials evaluating the efficacy of PREPARE plus an easy-to-read advance directive (AD) versus an AD alone, patients were included if they were ≥55 years old, English- or Spanish-speaking, and had ≥2 chronic conditions. We audio-recorded postintervention primary care visits and used the validated clinician-patient participation coding scheme to calculate the number of clinician ACP utterances concerning information-giving, recommendations, or supportive talk. We examined differences by study arm using mixed effects negative binomial models, stratifying by language. To assess possible mediation, we adjusted for active patient participation (e.g., asking questions or stating preferences).ResultsThree hundred ninety-three visits were audio-recorded (177 in PREPARE arm and 216 in AD-only arm). Recordings included 179 clinicians (mean 2.2 [SD 1.9] patients each). Patients' mean age was 66 ± 8 years, 31% had limited health literacy, and 25% were Spanish-speaking. Exactly 67% of recordings included information-giving, 85% recommendations, and 62% supportive talk. PREPARE resulted in 51% more clinician supportive talk versus the AD alone (mean 4.5 [8.9] vs. 2.9 [6.0] utterances; incidence rate ratio 1.51 [95% CI 1.02-2.24]). Effects were most pronounced among Spanish speakers. There were no differences in information-giving or recommendations. After adjusting for active patient participation, no differences in supportive talk remained.ConclusionsThe patient-directed PREPARE program was associated with greater clinician supportive ACP communication with older adults compared with an AD alone; the effect was most pronounced among Spanish speakers and was mediated by active patient participation. Thus, PREPARE helps patients be more engaged communicators, which in turn encourages clinicians to be more supportive of patients. Enhanced patient-clinician communication represents an important mechanism by which PREPARE may decrease disparities in ACP