INTRODUCTION
Advance care planning (ACP) has evolved from a focus on end-of-life-procedures to preparation for medical decision making.1,2 The literature is mixed about whether ACP increases care consistent with patients’ preferences, or goal concordant care (GCC).2 Prior studies often use retrospective chart review, which is subject to bias.1,3 The PREPARE for Your Care ACP program includes a website with video stories (PREPARE) and easy-to-read advance directives (ADs) that both focus on quality of life and preparation for communication and medical decision making. In trials, PREPARE plus the easy-to-read ADs increased ACP discussions and documentation up to 98%.4 Here, we assess whether the PREPARE website and ADs were associated with real-time, patient-reported GCC.
METHODS
This is a sub-analysis of the PREPARE trial where participants were randomized to the PREPARE website plus the easy-to-read AD versus the AD alone. The methods have been previously published.5 We included English-and-Spanish speaking patients from 4 San Francisco Public Health network primary care clinics who were ≥55 years of age with 2 or more chronic or serious illnesses.
After randomization and prior to the intervention, we conducted surveys by phone or in study offices to collect participant demographics and patient-reported GCC.6 We conducted follow-up GCC assessments at 6 and 12 months. We defined GCC as concordance between self-reported preferences for care and receipt of care. Staff asked, “If you had to make a choice today, would you prefer (a) medical care that focuses on extending your life as much as possible, even if it means having more pain/discomfort” (b) medical care that focuses on relieving your pain and discomfort as much as possible, even if it means not living as long or (c) I am not sure.” Staff then asked, “Which of the following best describes the type of medical care you are getting from your doctors right now,” with the same response options. Unsure responses were defined as discordant.
Analysis:
We excluded participants who had missing GCC data at baseline or follow-up. We used descriptive statistics and compared the percent of participants with GCC at baseline to 6- and 12-month timepoints, combined and separately, and stratified by arm using mixed effects logistic regression adjusted for baseline ACP and clinician. We stratified our analysis by health literacy, language, patient-reported ACP discussions, and ACP documentation by chart review using adjusted mixed effects logistic models.4
RESULTS
Of 986 trial participants, 798 (81%) had complete GCC data: 47.6% were Spanish-speaking and 39.4% had limited health literacy (Table 1). There were no demographic differences by arm. GCC increased from baseline to 6 or 12-months overall (adjusted 32.8% vs 59.3%), p<0.001; with similar increases for both study arms and separate timepoints (Figure 1). GCC did not differ by limited vs. adequate health literacy or English vs. Spanish language (p>0.05). GCC was more likely among individuals who, at 12 months, reported talking with surrogates (adjusted 66.1% vs 42.0%), talking with clinicians (72.5% vs 47.8%), p<.001 and whose chart included documented ACP vs not (66.7% vs 54.9%), p=0.002.
Table 1.
Participant Characteristics
| Characteristic | All Participants (N = 798) |
|---|---|
| Age, mean (SD), y | 63.2 (6.2) |
| Women, No. (%) | 494 (61.9) |
| Race and Ethnicity, No. (%) | |
| Latine/Hispanic | 419 (52.5) |
| White, non-Latine/Hispanic | 155 (19.4) |
| Black/African American | 132 (16.5) |
| Asian/Pacific Islander | 57 (7.2) |
| Multiethnic or other | 35 (4.4) |
| Fair-to-poor health status, No. (%) | 409 (51.5) |
| Spanish-speaking Language | 380 (47.6) |
| Limited Health Literacy, No. (%) | 314 (39.4) |
| Care Preferences at Baseline, No. (%) | |
| Prioritize extending life | 152 (19.0%) |
| Prioritize relieving pain/discomfort | 355 (44.5%) |
| Unsure | 291 (36.5%) |
There were no differences in any patient characteristic by study arm, p >0.05. Missing data: self-rated health: 3, limited health literacy: 1. At 12-months the goals of care percentages did not change significantly (17.2%, 48.8%, and 34.0% respectively).
We included patients who were followed to 12 months and answered both GCC questions at baseline (after randomization) and at 6 or 12 months. Among 986 trial participants, 71 people did not answer baseline questions; 178 people did not answer questions at 6 months; 176 people did not answer at 12 months; 131 people did not answer at either 6 or 12 months; 188 people did not answer baseline and did not answer at 6 or 12 months.
Figure 1. The PREPARE Interventions Increase Self-Reported Matching of Goal Concordant Care.
*Baseline is post-randomization, pre-intervention. All percentages were adjusted for baseline ACP documentation and clustering by clinician. For the overall cohort, goal concordant care increased significantly compared to baseline at 6 and 12 month separate time points, p <.0001. Goal concordant care also increased significantly between baseline and 6 and 12 month time points in each separate arm, p ≤.008, and there were no differences between study arms at any time point, p>0.05 (data not shown).
DISCUSSION
PREPARE plus the easy-to-read AD and the AD alone were equally effective in increasing self-reported, real-time GCC among older English- and Spanish-speaking primary care patients and mitigated disparities in GCC among patients with limited health literacy and Spanish-speakers. Patients who discussed and documented their ACP preferences were more likely to report GCC.
In prior trials, both the PREPARE website plus the easy-to-read AD and the AD alone resulted in greater ACP discussions, documentation, and patient empowerment to initiate ACP discussions with clinicians, although the effects were larger in the PREPARE arm.4,7 In the current study, both arms were equally effective in increasing GCC. The AD is currently integrated into the PREPARE online program and similarly focuses on quality of life and communication. For GCC, it may be most important to provide literacy-appropriate materials, in video or written format, that focus on quality of life and preparation for communication and medical decision making. Despite prior mixed literature,3 our positive findings are similar to another recent communication-based ACP study, which also used real-time GCC measurements.8
Limitations:
Our study was conducted within one health network in one city, limiting generalizability. The GCC measure was designed for hospitalized rather than primary care patients. Updated GCC measures should be co-developed with patients and caregivers.9,10
Conclusion:
ACP interventions, such as the PREPARE website and easy-to-read ADs focused on quality of life and preparation for medical decision making, rather than end-of-life procedures, may be more likely to result in GCC. Measuring patient-reported, real-time GCC may be more appropriate than retrospective measures.
ACKNOWLEDGEMENTS
Funding sources:
PREPARE was supported through grant R01AG045043 from the National Institutes of Health (NIH) National Institute on Aging (NIA) and a Patient-Centered Outcomes Research Institute (PCORI) Award (CDR-1306-01500). Development of PREPARE was supported by the S. D. Bechtel Jr Foundation, the California Healthcare Foundation, and the National Palliative Care Research Center. Dr Sudore is also funded in part by grant K24AG054415 from the NIH, NIA.
Footnotes
Conflict of Interest: none
We certify that this work is novel or confirmatory of recent novel clinical research.
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