Improving a Full Range of Advance Care Planning Behavior Change and Action Domains: The PREPARE Randomized Trial

Lum, Hillary D.; Barnes, Deborah E.; Katen, Mary; Shi, Ying; Boscardin, John; Sudore, Rebecca L.

doi:10.1016/j.jpainsymman.2018.06.007

Cited by 37 publications

(39 citation statements)

References 26 publications

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“…Our results showed increases in behavior change processes scores and action scores after using PRE-PARE similar to those of a previous trial evaluating this online program in research settings. 25,32 In that trial, participants viewed PREPARE in its entirety in a research office, so it is encouraging that in our study, there were increases in advance care planning engagement when patients used the tool on their own at home. Our study timeline may have been more reflective of how the tool would be used if "prescribed" by a health care professional in an outpatient setting, as participants were given several weeks to interact with the tool in their home rather than in a single encounter with a research assistant.…”

Section: Discussionmentioning

confidence: 73%

“…34 Among patients in the cancer care setting, the score for the action subscale of asking doctors questions declined from before to after use of PREPARE, similar to results of a previous study with this program. 32 In the cancer care setting, patients may have been more engaged in communication with doctors about their treatment and answered accordingly at baseline. After reviewing PREPARE, they may have learned that they had not asked about making medical decisions specifically, thereby changing their answer at the follow-up measure.…”

Section: Discussionmentioning

confidence: 99%

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Effect of an Interactive Website to Engage Patients in Advance Care Planning in Outpatient Settings

Howard¹,

Robinson²,

McKenzie³

et al. 2020

Ann Fam Med

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PURPOSE Online programs may help to engage patients in advance care planning in outpatient settings. We sought to implement an online advance care planning program, PREPARE (Prepare for Your Care; http://www. prepareforyourcare.org), at home and evaluate the changes in advance care planning engagement among patients attending outpatient clinics. METHODS We undertook a prospective before-and-after study in 15 primary care clinics and 2 outpatient cancer centers in Canada. Patients were aged 50 years or older (primary care) or 18 years or older (cancer care) and free of cognitive impairment. They used the PREPARE website over 6 weeks, with reminders sent at 2 or 4 weeks. We used the 55-item Advance Care Planning Engagement Survey, which measures behavior change processes (knowledge, contemplation, self-efficacy, readiness) on 5-point scales and actions relating to substitute decision makers, quality of life, flexibility for the decision maker, and asking doctors questions on an overall scale from 0 to 21; higher scores indicate greater engagement. RESULTS In total, 315 patients were screened and 172 enrolled, of whom 75% completed the study (mean age = 65.6 years, 51% female, 35% had cancer). The mean behavior change process score was 2.9 (SD 0.8) at baseline and 3.5 (SD 0.8) at follow-up (mean change = 0.6; 95% CI, 0.49-0.73); the mean action measure score was 4.0 (SD 4.9) at baseline and 5.2 (SD 5.4) at follow-up (mean change = 1.2; 95% CI, 0.54-1.77). The effect size was moderate (0.75) for the former and small (0.23) for the latter. Findings were similar in both primary care and cancer care populations. CONCLUSIONS Implementation of the online PREPARE program in primary care and cancer care clinics increased advance care planning engagement among patients.

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Section: Discussionmentioning

confidence: 73%

Section: Discussionmentioning

confidence: 99%

Effect of an Interactive Website to Engage Patients in Advance Care Planning in Outpatient Settings

Howard¹,

Robinson²,

McKenzie³

et al. 2020

Ann Fam Med

Self Cite

View full text Add to dashboard Cite

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“…These advance directives tend not to be used by clinicians, [17][18][19] and patients creating them tend to lack important knowledge relating to the treatment options described [20]. There is recognition that multiple behaviors are involved in successful ACP, notably conveying values and wishes to family members or friends even beyond the substitute decision-maker, and discussing wishes and future plans with health care professionals [21][22][23].…”

Section: Introductionmentioning

confidence: 99%

Exploring patient-reported barriers to advance care planning in family practice

et al. 2020

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Background: Although patient-centred care has become increasingly important across all medical specialties, when it comes to end of life care, research has shown that treatments ordered are not often concordant with people's expressed preferences. Patient and family engagement in Advance Care Planning (ACP) in the primary care setting could improve the concordance between patients' wishes and the healthcare received when patients cannot speak for themselves. The aim of this study was to better understand the barriers faced by older patients regarding talking to their family members and family physicians about ACP. Methods: In this multi-site cross-sectional study, three free text questions regarding reasons patients found it difficult to discuss ACP with their families or their family physicians were part of a self-administered questionnaire about patients' knowledge of and engagement in ACP. The questionnaire, which included closed ended questions followed by three probing open ended questions, was distributed in 20 family practices across 3 provinces in Canada. The free text responses were analyzed using thematic analysis and form the basis of this paper. Results: One hundred two participants provided an analyzable response to the survey when asked why they haven't talked to someone about ACP. Two hundred fifty-four answered the question about talking to their physician and 340 answered the question about talking to family members. Eight distinct themes emerged from the free text response analysis: 1. They were too young for ACP; 2. The topic is too emotional; 3. The Medical Doctor (MD) should be responsible for bringing up ACP 4. A fear of negatively impacting the patient-physician relationship; 5. Not enough time in appointments; 6. Concern about family dynamics; 7. It's not a priority; and 8. A lack of knowledge about ACP. Conclusions: Patients in our sample described many barriers to ACP discussions, including concerns about the effect these discussions may have on relationships with both family members and family physicians, and issues relating to patients' knowledge and interpretation of the importance, responsibility for, or relevance of ACP itself. Family physicians may be uniquely placed to leverage the longitudinal, person-centred relationship they have with patients to mitigate some of these barriers.

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“…Some people prefer to actively participate in all aspects of decision making, others prefer to defer to family or esteemed community members to decide, while still others prefer to more passively follow the recommendations of medical experts. In recognition of these differences among individuals, CSWs can assist people in identifying the appropriate ACP process, tools and forms that best meets their needs (Lum et al 2018).…”

Section: Additional Csw Leadership Opportunities In Acpmentioning

confidence: 99%

Advance Care Planning: Opportunities for Clinical Social Work Leadership

et al. 2019

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As our population ages, providing person-centered, family-focused, culturally congruent, quality care becomes ever more important. Advance care planning (ACP) conversations seek to elicit a person's values, beliefs and preferences and to identify who might be a surrogate decision-maker for a person if they are unable or unwilling to speak for themselves. These nuanced conversations provide the foundation for the delivery of personalized goal-concordant care. Yet, despite the many benefits associated with ACP, it remains underutilized. Clinical social workers are well positioned to take a leadership role in ACP. This paper highlights a range of ACP roles and resources for clinical social workers within healthcare and in the community.

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Improving a Full Range of Advance Care Planning Behavior Change and Action Domains: The PREPARE Randomized Trial

Cited by 37 publications

References 26 publications

Effect of an Interactive Website to Engage Patients in Advance Care Planning in Outpatient Settings

Effect of an Interactive Website to Engage Patients in Advance Care Planning in Outpatient Settings

Exploring patient-reported barriers to advance care planning in family practice

Advance Care Planning: Opportunities for Clinical Social Work Leadership

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