If you don't remember your password, you can reset it by entering your email address and clicking the Reset Password button. You will then receive an email that contains a secure link for resetting your password
If the address matches a valid account an email will be sent to __email__ with instructions for resetting your password
Address correspondence to: Lauren J. Van Scoy, MD, Humanities and Public Health Sciences, Pennsylvania State University College of Medicine, 500 University Drive, H041, PO Box 850, Hershey, PA 17033, USA.
Department of Critical Care Medicine, Clinical Evaluation Research Unit, Kingston General Health Research Institute, Queen's University, Kingston, Ontario, Canada
Although measures that assess patient engagement in the advance care planning (ACP) process exist, there are no validated tools to assess surrogate decision makers' (SDMs') role in ACP.
Objectives
The objective of this study was to adapt and begin to validate a patient-oriented questionnaire for use with SDMs of patients with chronic illness.
Methods
Questions from the 55-item patient-oriented ACP engagement survey were adapted for SDMs and assessed for face validity. The resultant 47-item questionnaire was administered to 65 SDMs of patients with chronic illness. Responses were assessed and items were flagged for removal based on item redundancy, nonresponses, and ceiling effects. A preliminary exploratory factor analysis was performed, internal consistency was assessed, and domains were constructed based on findings.
Results
The 47-item questionnaire was administered to 65 participants (mean age 51.8; 81% female; 96% Caucasian). Seventeen items were removed owing to redundancy (r > 0.80), and 13 items lacking face validity were removed. In a preliminary exploratory factor analysis of the resultant 17-item questionnaire, a three-factor solution was deemed most statistically and conceptually sound. Items were organized into domains: 1) serving as an SDM (seven items); 2) contemplation (four items); 3) readiness (six items). Internal consistency for each domain was high (Cronbach alpha 0.90–0.91).
Conclusion
The 17-item ACP engagement survey for SDMs (ACP-17-SDM) is a conceptually sound and reliable questionnaire adaptation of the original ACP engagement survey. This questionnaire may be used by researchers in parallel with the patient-oriented ACP engagement survey to more fully understand the impact of ACP interventions on SDMs. Larger studies are needed to more closely examine construct validity.
Advance care planning (ACP) was recently defined by an international consensus panel as a process intended to “help ensure people receive medical care that is consistent with their values, goals, and preferences during serious and chronic illness.”
The panel also noted that ACP should include selection of surrogate decision makers (SDMs) capable of making medical decisions should the patient become incapacitated.
The role of the SDM may also vary based on legal and cultural factors. When ACP is performed in advance of major medical events, patients experience less distress, experience improved satisfaction with care, and are more likely to receive care consistent with their wishes.
Similarly, SDMs of patients who have done ACP are less likely to experience distress from medical decision making and have improved satisfaction with care.
Finding new ways to engage patients and their families in these important conversations is critical if we hope to increase the number of individuals who have documented advance care plans so that clinicians and families may carry out their wishes. It is equally important to consider the role of SDMs in the ACP process because studies have found that up to 70% of individuals will need some or all their end-of-life decisions to be made by a surrogate.
As ACP interventions have been developed and tested, however, assessment has focused primarily on patient engagement with ACP, by measuring either advance directive completion rates,
Absent, however, is a measure of surrogate engagement in the ACP process.
To measure patient engagement in ACP, Sudore et al. developed and validated a questionnaire grounded in social cognitive theory and the transtheoretical model of behavior change that has been utilized as an important outcome measure in several studies and interventional trials.
Using a video-based advance care planning (ACP) website to facilitate group visits for diverse older adults in primary care is feasible and improves ACP engagement (TH307D).
Although the psychometrics of that questionnaire, called the ACP engagement survey, have been well studied, it has not been adapted for use with the patients' SDMs. The purpose of this study was to adapt the existing 55-item patient-oriented ACP engagement survey for use with SDMs and begin to assess the validity of the adapted survey.
Methods
This prospective study was conducted in five phases (Fig. 1).
Fig. 1Methods for creating and validating the ACP engagement survey–surrogate decision maker version (17 items). ACP = advance care planning.
For each domain, items assess four behavior change constructs arising from the transtheoretical model of behavior change and social cognitive theory: 1) knowledge; 2) contemplation; 3) self-efficacy; and 4) readiness.
The ACP-55 has been previously shown to have high reliability (Cronbach alpha 0.97) and construct validity based on both statistically significant associations between survey scores and completion of advance directives as well as correlations between change scores in response to an ACP intervention (r = 0.89, P < 0.001).
Howard M RC, McKenzie M, Fyles G, et al. Effectiveness of an interactive website to engage patients in advance care planning in outpatient settings: a multicenter, prospective, before-after study. Ann Fam Med. [Under Review].
The ACP-55 question stems were reworded to apply to SDMs and then examined by an eight-person panel of ACP researchers, clinicians, and laypersons for face validity. Resultantly, eight items were removed and six items were flagged for reevaluation after data collection. The result was a 47-item survey (ACP-SDM-47).
Phase 2: Administration of the ACP-SDM-47
After Institutional Review Board approval, the Penn State Survey Research Center recruited a convenience sample of participants identified from medical record databases using the following inclusion criterion: 1) >18 years old; 2) can read and write English; 3) had a family member who has a chronic illness (defined using Iezonni's ICD-9 Criterion of chronic illness)
; and 4) were willing to complete and return the survey. The Iezonni chronic illness codes are grouped into eight categories that include the following: cancer with poor prognosis; chronic pulmonary disease; coronary artery disease; congestive heart failure; peripheral vascular disease; severe, chronic liver disease; diabetes with end organ damage; and renal failure. Participants were also recruited from the community around Penn State University Park via flyers, social media postings, and community e-mail lists. Interested participants contacted the survey center and screened by phone to confirm 1) their family member had a qualifying chronic illness (via self-report) and 2) that they did not have mental impairment as measured by a score of >21 on the Montreal Cognitive Assessment (phone version).
Eligible participants were sent a paper copy of the ACP-SDM-47, a prepaid return envelope, and a $10.00 stipend. Since this study focused on the feasibility, usability, and acceptability of the adapted questionnaire and because we used a convenience sampling strategy, a power analysis was not conducted.
Phase 3, Initial Item Reduction
First, frequency counts for each of the 47 items were examined for those with >10% nonresponses or missing data with the intention of item removal. Second, responses were examined for ceiling effect, defined as any item where the selection of the item at the top of the scale occurred in >80% of instances. Third, an item correlation matrix was constructed to assess for item redundancy, defined as those items with an r > 0.8. Redundant items were flagged for removal. Finally, the study team reevaluated the face validity of all 47 items, informed by the psychometric results.
Phase 4, Preliminary Exploratory Factor Analysis
After removing items identified through the aforementioned item reduction process, a preliminary exploratory factor analysis of this small sample was conducted to see if the remaining items grouped into domains. To avoid losing participants with some missing items, before implementing the factor analysis, we used the expectation-maximization algorithm to impute the most likely values for missing items given the values of the participants' nonmissing items and assuming the correlation structure observed between items among all participants.
We used the common factor model with PROMAX oblique factor rotation to allow for correlation between the underlying factors. The first step in the exploratory factor analysis was to decide how many factors should be retained. When making this decision, we considered the amount of variance explained by the two-, three-, four-, and five-factor solutions as well as the interpretability and parsimony of the resulting rotated factor solutions.
Once the number of factors was decided upon and the rotated factor solution was obtained, we examined the factor loading matrix and identified the factors on which each item loaded most strongly. We grouped variables according to which item they loaded most heavily on (>0.5) and labeled the resultant grouping (“domain”) to reflect the contents of its items. Face validity of the item groupings and the strength of the loadings and cross-loadings across domains were considered to determine whether any items should be placed in a domain other than the one that they loaded most heavily on. This was done through consensus among authors, only for situations where the factor loadings of an item were very similar between two domains, and if the item was felt to be more conceptually aligned to the domain with the slightly lower loading.
Phase 5, Evaluation of Internal Consistency
Internal reliability of the domains was assessed by Cronbach's alpha. We reassessed Cronbach's alpha after removing one item at a time from each domain to see if any item was reducing the internal consistency of the domain it was placed in.
All analyses were conducted in SAS (version 9.4; SAS Institute Inc., Cary, NC).
Results
Phase 1, Adaptation of the ACP-55 and Review for Face Validity
During Phase 1, we adapted the original patient version of the 55-item ACP engagement survey by altering the question stems to apply to SDMs and key informants (Appendix 1). For example, the patient-oriented ACP-55 item “How confident are you that today you could ask someone to be your medical decision maker?” was changed to “As of today, how confident are you that you could serve as your loved one's medical decision maker” for the ACP-47-SDM. We opted not to change the wording of the question stems from the original survey because these stems were generated from focus groups including both patients and surrogates and the original survey was vetted extensively by patients.
Howard M RC, McKenzie M, Fyles G, et al. Effectiveness of an interactive website to engage patients in advance care planning in outpatient settings: a multicenter, prospective, before-after study. Ann Fam Med. [Under Review].
Because our goal was to align the survey as closely as possible to the well-validated ACP-55, stems were kept as close to the original as possible.
After reviewing the stem adaptations, eight items were removed owing to a lack of face validity. For example, one item for the patient-oriented survey asked “how much have you thought about whether or not certain health situations would make your life not worth living?” The adapted version of this question became “how much have you thought about whether or not your loved one has considered certain health situations that would make his/her life not worth living?” This was deemed to lack face validity because the item now examined whether the SDM thought about whether the patient thought about the issues, a somewhat abstract concept that is noncritical to serving in the role of an SDM.
Phase 2, Survey Administration
Next, the ACP-47-SDM was administered to 65 participants with a mean age of 51.8 years (SD 13.8) and 81% female. No participants were excluded owing to cognitive dysfunction. Racial data were collected for 49 participants who were 96% Caucasian and 4% African American and were missing for 21 participants due to administrative error.
Phase 3, Item Reduction
Table 1 shows the reasons for exclusion for each of the removed items. No items were deleted as a result of missing data, nonresponses, or ceiling effect. We removed 17 items due to redundancy (correlations with r > 0.8; Appendix 2). Two items that were highly correlated (r = 0.744) and therefore deleted owing to their redundancy were as follows: “how much have you thought about the possibility of being asked to make medical decisions for your loved one?” and “how much have you thought about your role as your loved one's medical decision maker?” The remaining items were reviewed for face validity and 13 additional items were deleted. Reasons for deletion based on face validity included items involving two separate ideas within a single question (Item #5), for example, thinking about playing the role of SDM and also thinking about being part of a discussion with others. Seven items were deleted because the group felt that the question inquired about thoughts/behaviors that were not the role of the SDM to initiate (e.g., discussing one's role as an SDM with the patient's doctor; Items # 6, 8, 9, 11, 12, 23) and are also behaviors that the SDM cannot “act” upon unless the patient themselves invited the action. Thus, including these items could negatively impact the SDM's engagement score with regards to behaviors outside their own control. Hence, these items were deleted. Some items had multiple reasons for deletion as noted in Table 1. The resulting survey consisted of 17 remaining items.
Table 1Reasons for Item Exclusions From the 47-Item ACP Engagement Survey–Surrogate Decision Maker Version (Postsurvey Administration)
Item
Question
Reason for Exclusion
1
How well informed are you about who can be a medical decision maker?
Not excluded
2
How well informed are you about what makes someone a good medical decision maker?
Not excluded
3
How well informed are you about the types of decisions that you may have to make for your loved one in the future?
Not excluded
4
How much have you thought about your role as your loved one's medical decision maker?
Not excluded
5
How much have you thought about being part of a discussion with your loved one's doctors about your role as a medical decision maker for your loved one?
Lacked face validity; double-barreled question
6
How much have you thought about being part of a discussion with your loved one's other family and friends about your role as your loved one's medical decision maker?
Lacked face validity
7
As of today, how confident are you that you could serve as your loved one's medical decision maker?
Not excluded
8
As of today, how confident are you that you could be part of a discussion with your loved one's doctors about your role as your loved one's medical decision maker?
Redundant with other items, lacked face validity
9
As of today, how confident are you that you could be part of a discussion with your loved one's other family and friends about your role as your loved one's medical decision maker?
Redundant with other items, lacked face validity
10
How ready are you to formally discuss with your loved one your role as their medical decision maker?
Not excluded
11
How ready are you to be part of a discussion with your loved one's doctor about your role as your loved one's medical decision maker?
Lacked face validity
12
How ready are you to be part of a discussion with your loved one's other family and friends about your role as your loved one's medical decision maker?
Redundant with other items, lacked face validity
13
How ready are you to be named a medical decision maker in official papers that are signed by your loved one?
Lacked face validity
14
How much have you thought about talking with your loved one about whether or not there are certain health situations that would make your loved one's life not worth living?
Not excluded
15
How much have you thought about being part of a discussion with your loved one's doctors about whether or not there are certain health situations that would make your loved one's life not worth living?
Not excluded
16
How much have you thought about being part of a discussion with your loved ones other family and friends about whether or not there are certain health situations that would make your loved one's life not worth living?
Redundant with other items
17
As of today, how confident are you that you could talk with your loved one about whether or not certain health situations would make their life not worth living?
Redundant with other items
18
As of today, how confident are you that you could be part of a discussion with your loved one's doctors about whether or not there are certain health situations that would make your loved one's life not worth living?
Redundant with other items
19
As of today, how confident are you that you could talk with your loved one's other family and friends about whether or not there are certain health situations that would make your loved one's life not worth living?
Redundant with other items
20
How ready are you to talk with your loved one about whether or not there are certain health situations that would make their life not worth living?
Not excluded
21
How ready are you to be part of a discussion with your loved one's doctor about whether or not there are certain health situations that would make your loved one's life not worth living?
Not excluded
22
How ready are you to be part of a discussion with your loved one's other family and friends about whether or not there are certain health situations that would make your loved one's life not worth living?
Redundant with other items
23
How ready are you help your loved one sign official papers putting his/her wishes in writing about whether or not there are certain health situations that would make your loved one's life not worth living?
Lacked face validity
24
How much have you thought about talking with your loved one about the care he/she would want if they were very sick or near the end of life?
Not excluded
25
How much have you thought about being part of a discussion with your loved one's doctors about the care your loved one would want if he/she was very sick or near the end of life?
Not excluded
26
How much have you thought about being part of a discussion with your loved one's other family and friends about the care your loved one would want if he/she were very sick or near the end of life?
Redundant with other items
27
As of today, how confident are you that you could talk with your loved one about the care he/she would want if he/she were very sick or near the end of life?
Not excluded
28
As of today, how confident are you that you could be part of a discussion with your loved one's doctors about the care your loved one would want if he/she were very sick or near the end of life?
Not excluded
29
As of today, how confident are you that you could be part of a discussion with your loved one's other family and friends about the care your loved one would want if he/she were very sick or near the end of life?
Redundant with other items
30
How ready are you to talk to your loved one about the kind of medical care he/she would want if they were very sick or near the end of life?
Not excluded
31
How ready are you to be part of a discussion with your loved one's doctor about the kind of medical care your loved one would want if he/she were very sick or near the end of life?
Not excluded
32
How ready are you to be part of a discussion with your loved one's other family and friends about the kind of medical care he/she would want if he/she were very sick or near the end of life?
Redundant with other items
33
How ready are you to help your loved one sign official papers putting his/her wishes in writing about the kind of medical care he/she would want if he/she very sick or near the end of life?
Redundant with other items; lacked face validity
34
How well informed are you about the different amounts of flexibility a person can give their medical decision maker?
Lacked face validity
35
How much have you thought about the amount of flexibility you would have as your loved one's medical decision maker?
Redundant with other items; lacked face validity
36
How much have you thought about talking with your loved one about the amount of flexibility he/she would want to give you as a medical decision maker?
Lacked face validity
37
How much have you thought about being part of a discussion with your loved one's doctor about the amount of flexibility you would have as the medical decision maker?
Redundant with other items; lacked face validity
38
How much have you thought about being part of a discussion with your loved one's other family and friends about the amount of flexibility you would have as the medical decision maker?
Lacked face validity
39
As of today, how confident are you that you could talk with your loved one about how much flexibility he/she would want to give you as a medical decision maker?
Lacked face validity
40
As of today, how confident are you that you could be part of a discussion with your loved one's doctor about how much flexibility your loved one would want to give you as a medical decision maker?
Lacked face validity
41
As of today, how confident are you that you could be part of a discussion with your loved one's other family and friends about how much flexibility your loved one would want to give you as a medical decision maker?
Lacked face validity
42
How ready are you to talk to your loved one about how much flexibility he/she would want to give you as a medical decision maker?
Lacked face validity
43
How ready are you to be part of a discussion with your loved one's doctor about how much flexibility your loved one would want to give you as a medical decision maker?
Redundant with other items; lacked face validity
44
How ready are you to be part of a discussion with your loved one's other family and friends about how much flexibility your loved one would want to give you as a medical decision maker?
Redundant with other items; lacked face validity
45
How ready are you to help your loved one sign official papers about how much flexibility he/she would want to give you as a medical decision maker?
Redundant with other items; lacked face validity
46
How confident are you that today you could ask the right questions of your loved one's doctors to help make good medical decisions for your loved one if your loved one was unable to speak for themselves?
Deleted due to typo in question stem
47
How ready are you to ask your loved one's doctor questions to help you make a good medical decision for your loved one if your loved one was unable to speak for themselves?
Eight (12%) of the 65 participants had missing data for at least one of the 17 items. One participant missed seven items, and seven respondents missed between one and four items. All missing item values were imputed prior to factor analysis so all 65 participants could be included (see methods).
A one-factor solution explained 78% of the variance in the 17 items, two-factor solution explained 86%, three-factor solution explained 91%, four-factor solution explained 95%, and five-factor solution explained 99%. We reviewed the two-, three-, four-, and five-factor solutions and selected the three-factor solution for its simplicity and interpretability. The three factors were correlated with each other with the three pairwise Pearson's correlation coefficients ranging from 0.59 to 0.63.
We reviewed the items that loaded onto the three-factor solution and grouped items according to their factor loadings (Table 2). The seven items grouped in Factor 1 were reviewed for face validity by assessing the common features of these items with regards to their theoretical construct (e.g., self-perceived confidence). The identified similarities were that all items assessed either knowledge or self-efficacy about serving as an SDM, and thus the factor was labeled “serving as SDMs.” No changes were made to Factor 1 based on face validity or clinical sensibility. The loadings of Factor 1 ranged from 0.48 to 0.89.
Table 2Exploratory Analysis of the 17-Item Questionnaire Items
The communality is the proportion of the variance of the item accounted for by the three-factor solution. Ideally, the communality would be near 1 and would be caused by a near 1 loading on single factor, but communalities greater than 0.4 or 0.5 are typically considered acceptable.
1. How well informed are you about who can be a medical decision maker?
Knowledge
0.89
−0.03
−0.02
0.74
2. How well informed are you about what makes someone a good medical decision maker?
Knowledge
0.89
−0.12
0.06
0.75
3. How well informed are you about the types of decisions that you may have to make for your loved one in the future?
Knowledge
0.70
0.09
0.03
0.62
4. How much have you thought about your role as your loved one's medical decision maker?
Contemplation
0.52
0.19
0.12
0.53
5. As of today, how confident are you that you could serve as your loved one's medical decision maker?
Self-efficacy
0.70
0.06
0.03
0.57
6. As of today, how confident are you that you could talk with your loved one about the care he/she would want if he/she were very sick or near the end of life?
Self-efficacy
0.48
0.23
0.14
0.55
7. As of today, how confident are you that you could be part of a discussion with your loved one's doctor about the care your loved one would want if he/she were very sick or near the end of life?
Self-efficacy
0.51
0.31
0.11
0.67
8. How much have you thought about talking with your loved one about whether or not there are certain health situations that would make your loved one's life not worth living?
Contemplation
0.29
0.24
0.38
0.62
9. How much have you thought about being part of a discussion with your loved one's doctors about whether or not there are certain health situations that would make your loved one's life not worth living?
Contemplation
0.06
0.49
0.30
0.57
10. How much have you thought about talking with your loved one about the care he/she would want if they were very sick or near the end of life?
Contemplation
0.14
0.62
0.28
0.86
11. How much have you thought about being part of a discussion with your loved one's doctors about the care he/she would want if they were very sick or near the end of life?
Contemplation
0.05
1.04
−0.12
1.00
12. How ready are you to formally discuss with your loved one your role as their medical decision maker?
Readiness
0.38
−0.06
0.50
0.56
13. How ready are you to talk to your loved one about the kind of medical care he/she would want if they were very sick or near the end of life?
Readiness
−0.04
0.09
0.93
0.92
14. How ready are you to talk to your loved one about whether or not there are certain health situations that would make your loved one's life not worth living?
Readiness
0.16
0.07
0.72
0.76
15. How ready are you to be part of a discussion with your loved one's doctor about whether or not there are certain health situations that would make your loved one's life not worth living?
Readiness
0.20
0.22
0.49
0.63
16. How ready are you to be part of a discussion with your loved one's doctor about the kind of medical care your loved one would want if he/she were very sick or near the end of life?
Readiness
0.00
0.42
0.46
0.63
17. How ready are you to ask your loved one's doctor questions to help you make a good medical decision for your loved one if your loved one was unable to speak for themselves?
Readiness
−0.11
0.47
0.28
0.37
SDM = surrogate decision maker.
a The communality is the proportion of the variance of the item accounted for by the three-factor solution. Ideally, the communality would be near 1 and would be caused by a near 1 loading on single factor, but communalities greater than 0.4 or 0.5 are typically considered acceptable.
Factor 2 had five items that were reviewed using similar procedures. It was noted that three of the five items involved contemplation about various aspects of surrogate decision making. One item (Item #8; how much have you thought about talking with your loved one about whether or not there are certain health situations that would make your loved one's life not worth living?) that was related to contemplation loaded weakly into the third factor (0.38) with a loading of 0.24 in Factor 2. We decided to move this item into Factor 2 based on face validity because the other items in Factor 2 all assessed contemplation. It was also noted that one item (Item #17; how ready are you to ask your loved one's doctor questions to help you make a good medical decision for your loved one if your loved one was unable to speak for themselves?) loaded into Factor 2 with a value of 0.47 but had higher face validity in Factor 3 and was therefore moved to Factor 3. Factor 2 was named “Contemplation.” The resulting Factor 2 had factor loadings ranging from 0.24 to 1.04.
After moving Item #17 to Factor 3, that factor contained six items with a loading range of 0.28 to 0.93. All items in Factor 3 were related to readiness to serve in the role of SDM, and the factor was thus named “Readiness.”
The resultant survey consists of 17 items with three factors (“domains”) (see Appendix 3 for final survey): 1) serving as SDM (seven items), 2) contemplation (four items), and 3) readiness (six items).
Phase 5, Evaluation of Internal Consistency
The Cronbach's alpha for Factors 1, 2, and 3 were 0.91, 0.91, and 0.90, respectively, which is generally considered an indication of excellent internal consistency. In no cases did the Cronbach's alpha significantly increase when an item was removed.
Discussion
It is increasingly recognized that ACP is a complex process involving multiple stakeholders in addition to patients themselves, such as family, friends, and clinicians. Although much attention has been paid to the study of how ACP interventions engage patients in the ACP process, less work has focused on engaging the SDMs in ACP, despite their equally important role.
This may be due, in part, to a lack of validated measures that assess how interventions impact SDMs.
This study resulted in a questionnaire that measures the extent to which SDMs have engaged in the ACP process. To do so, we adapted a well-validated patient-centered survey that is grounded in behavior change theories and related constructs relevant to ACP (knowledge, contemplation, self-efficacy, and readiness). The result was a 47-item adapted questionnaire that was then shortened into a short, 17-item questionnaire. This questionnaire could be useful for researchers seeking to measure engagement in the ACP process by SDMs and also may provide utility by allowing comparisons between engagement of the patients (using the original survey) with engagement of their SDMs. That said, relevant ACP behaviors for a patient may be slightly different than for a surrogate. For this reason, we did not anticipate that all items of the original 55-item survey would map onto the adapted SDM survey. Furthermore, shortened versions of the original patient-oriented survey (4, 9, 15, and 34 items) have been published and are being validated.
Although our preliminary exploratory factor analysis is limited by small sample size, it provides useful information it resulted in identification of three domains within the final 17-item questionnaire (The ACP-17-SDM; Appendix 3). Domain 1, “Serving as SDM,” includes seven items that assess knowledge (three items), contemplation (one item), self-efficacy (three items). Domain 2, “Contemplation,” includes four items that assess contemplation (how much surrogates have thought about end-of-life issues).
The third domain, “Readiness,” includes six items that assess readiness and measure participants' stage of readiness to engage in various ACP behaviors. Responses to the readiness question are based on the transtheoretical model's five stages of change, allowing the respondent's “stage of change” for each of the six ACP behaviors to be assessed in addition to the total domain score. Given the limited precision of the factor loadings due to the small sample size, we recommend each factor be reported as a domain score computed as the unweighted average of the items in that domain. Larger studies are needed to verify the validity of these domains.
Still, the domain scores may be helpful for interventionalists examining mechanisms by which an intervention engages participants in ACP. For example, an intervention intended to start conversations would be expected to increase participants' contemplation scores with lesser effect on “readiness” scores (which assesses subsequent actions). Ideal ACP interventions will increase participants' overall engagement in the ACP process and effect all of these domains equally, yet the complexity of the ACP process likely makes a single intervention insufficient, and consideration should be given to how ACP interventions effect each of these domains.
A limitation of this study is the small, homogenous, convenience sample, which could limit the stability and generalizability of the results. Furthermore, using convenience sampling may result in selection bias related to literacy or other factors. Second, we did not collect data on the patients' medical conditions. Third, we have not yet assessed the tool's responsiveness to intervention.
Fourth, some items had fairly low loadings on the factors they were assigned. Even so, this study introduces a brief, 17-item questionnaire that assesses SDM engagement in ACP and is derived from a well-validated patient-oriented survey. Additional studies with larger sample size and varied demographics, literacy, and cultures are needed to further validate and possibly shorten the questionnaire to mirror work in the patient-oriented version of survey
and to assess its' responsiveness to intervention.
Disclosures and Acknowledgments
The authors would like to acknowledge the Pennsylvania State University Survey Research Center for assistance with participant recruitment and data collection, Jean Reading for assistance with protocol/IRB development and data entry, and the research team of Drs. Michael Green and Benjamin Levi for reviewing early versions of the survey adaptation.
This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors. No authors have any conflicts of interest to disclose.
Ethical approval: The study was approved by the Penn State Hershey Institutional Review Board; all participants provided consent via implied consent via return of the questionnaire.
Appendix
Appendix 1Adaptation of the 55-Item Patient-Oriented ACP Engagement Survey
How well informed are you about who can be a medical decision maker?
Unchanged
Continued testing
2
How well informed are you about what makes someone a good medical decision maker?
Unchanged
Continued testing
3
How well informed are you about the types of decisions that a medical decision maker may have to make for you in the future?
How well informed are you about the types of decisions that you may have to make for your loved one in the future?
Continued testing
4
How much have you thought about who your medical decision maker should be?
How much have you thought about your role as your loved one's medical decision-maker?
Continued testing
5
How much have you thought about asking someone to be your medical decision maker?
How much have you thought about the possibility of being asked to make medical decisions for your loved one?
Excluded due to a lack of face validity
6
How much have you thought about talking with your doctors about who you want your medical decision maker to be?
How much have you thought about being part of a discussion with your loved one's doctors about your role as a medical decision-maker for your loved one?
Continued testing
7
How much have you thought about talking with your other family and friends about who you want your medical decision maker to be?
How much have you thought about being part of a discussion with your loved one's other family and friends about your role as your loved one's medical decision-maker?
Continued testing
8
How confident are you that today you could ask someone to be your medical decision maker?
As of today, how confident are you that you could serve as your loved one's medical decision maker?
Continued testing
9
How confident are you that today you could talk with your doctors about who you want your medical decision maker to be?
As of today, how confident are you that you could be part of a discussion with your loved one's doctors about your role as your loved one's medical decision maker?
Continued testing
10
How confident are you that today you could talk with your other family and friends about who you want your medical decision maker to be?
As of today, how confident are you that you could be part of a discussion with your loved one's other family and friends about your role as your loved one's medical decision maker?
Continued testing
11
How ready are you to formally ask someone to be your medical decision maker?
How ready are you to formally discuss with your loved one your role as their medical decision maker?
Continued testing
12
How ready are you to talk with your doctor about who you want your medical decision maker to be?
How ready are you to be part of a discussion with your loved one's doctor about your role as your loved one's medical decision maker?
Continued testing
13
How ready are you to talk to your other family and friends about who you want your medical decision maker to be?
How ready are you to be part of a discussion with your loved one's other family and friends about your role as your loved one's medical decision maker?
Continued testing
14
How ready are you to sign official papers naming a person or group of people to make medical decisions for you?
How ready are you to be named a medical decision maker in official papers that are signed by your loved one?
Continued testing
15
How much have you thought about whether or not certain health situations would make your life not worth living?
How much have you thought about whether or not your loved one has considered certain health situations that would make his/her life not worth living?
Excluded due to a lack of face validity
16
How much have you thought about talking with your decision maker about whether or not certain health situations would make your life not worth living?
How much have you thought about talking with your loved one about whether or not there are certain health situations that would make your loved one's life not worth living?
Continued testing
17
How much have you thought about talking with your doctors about whether or not certain health situations would make your life not worth living?
How much have you thought about being part of a discussion with your loved one's doctors about whether or not there are certain health situations that would make your loved one's life not worth living?
Continued testing
18
How much have you thought about talking with your other family and friends about whether or not certain health situations would make your loved one's life not worth living?
How much have you thought about being part of a discussion with your loved ones other family and friends about whether or not there are certain health situations that would make your loved one's life not worth living?
Continued testing
19
How confident are you that today you could talk with your decision maker about whether or not certain health situations would make your life not worth living?
As of today, how confident are you that you could talk with your loved one about whether or not certain health situations would make their life not worth living?
Continued testing
20
How confident are you that today you could talk with your doctors about whether or not certain health situations would make your life not worth living?
As of today, how confident are you that you could be part of a discussion with your loved one's doctors about whether or not there are certain health situations that would make your loved one's life not worth living?
Continued testing
21
How confident are you that today you could talk with your other family and friends about whether or not certain health situations would make your life not worth living?
As of today, how confident are you that you could talk with your loved one's other family and friends about whether or not there are certain health situations that would make your loved one's life not worth living?
Continued testing
22
How ready are you to decide whether or not certain health situations would make your life not worth living?
How ready are you to help your loved one decide whether or not certain health situations would make their life not worth living?
Excluded due to a lack of face validity
23
How ready are you to talk to your decision maker about whether or not certain health situations would make your life not worth living?
How ready are you to talk with your loved one about whether or not there are certain health situations that would make their life not worth living?
Continued testing
24
How ready are you to talk to your doctor about whether or not certain health situations would make your life not worth living?
How ready are you to be part of a discussion with your loved one's doctor about whether or not there are certain health situations that would make your loved one's life not worth living?
Continued testing
25
How ready are you to talk to your other family and friends about whether or not certain health situations would make your life not worth living?
How ready are you to be part of a discussion with your loved one's other family and friends about whether or not there are certain health situations that would make your loved one's life not worth living?
Continued testing
26
How ready are you to sign official papers putting your wishes in writing about whether or not certain health situations would make your loved one's life not worth living?
How ready are you help your loved one sign official papers putting his/her wishes in writing about whether or not there are certain health situations that would make your loved one's life not worth living?
Continued testing
27
How much have you thought about the care you would want if you were very sick or near the end of life?
How much have you thought about the care your loved one would want if he/she were very sick or near the end of life?
Excluded due to a lack of face validity
28
How much have you thought about talking with your decision maker about the care you would want if you were very sick or near the end of life?
How much have you thought about talking with your loved one about the care he/she would want if they were very sick or near the end of life?
Continued testing
29
How much have you thought about talking with your doctors about the care you would want if you were very sick or near the end of life?
How much have you thought about being part of a discussion with your loved one's doctors about the care your loved one would want if he/she was very sick or near the end of life?
Continued testing
30
How much have you thought about talking with your other family and friends about the care you would want if you were very sick or near the end of life?
How much have you thought about being part of a discussion with your loved one's other family and friends about the care your loved one would want if he/she were very sick or near the end of life?
Continued testing
31
How confident are you that today you could talk with your decision maker about the care you would want if you were very sick or near the end of life?
As of today, how confident are you that you could talk with your loved one about the care he/she would want if he/she were very sick or near the end of life?
Continued testing
32
How confident are you that today you could talk with your doctors about the care you would want if you were very sick or near the end of life?
As of today, how confident are you that you could be part of a discussion with your loved one's doctors about the care your loved one would want if he/she were very sick or near the end of life?
Continued testing
33
How confident are you that today you could talk with your other family and friends about the care you would want if you were very sick or near the end of life?
As of today, how confident are you that you could be part of a discussion with your loved one's other family and friends about the care your loved one would want if he/she were very sick or near the end of life?
Continued testing
34
How ready are you to decide on the medical care you would want if you were very sick or near the end of life?
How ready are you to help your loved one decide on the medical care he/she would want if he/she were very sick or near the end of life?
Excluded due to a lack of face validity
35
How ready are you to talk to your decision maker about the kind of medical care you would want if you were very sick or near the end of life?
How ready are you to talk to your loved one about the kind of medical care he/she would want if they were very sick or near the end of life?
Continued testing
36
How ready are you to talk to your doctor about the kind of medical care you would want if you were very sick or near the end of life?
How ready are you to be part of a discussion with your loved one's doctor about the kind of medical care your loved one would want if he/she were very sick or near the end of life?
Continued testing
37
How ready are you to talk to your other family and friends about the kind of medical care you would want if you were very sick or near the end of life?
How ready are you to be part of a discussion with your loved one's other family and friends about the kind of medical care he/she would want if he/she were very sick or near the end of life?
Continued testing
38
How ready are you to sign official papers putting your wishes in writing about the kind of medical care you would want if you were very sick or near the end of life?
How ready are you to help your loved one sign official papers putting his/her wishes in writing about the kind of medical care he/she would want if he/she very sick or near the end of life?
Continued testing
39
How well informed are you about what it means to give a medical decision maker flexibility to make future decisions?
Unchanged
Excluded due to a lack of face validity
40
How well informed are you about the different amounts of flexibility a person can give their medical decision maker?
Unchanged
Continued testing
41
How much have you thought about the amount of flexibility you would want to give your medical decision maker?
How much have you thought about the amount of flexibility you would have as your loved one's medical decision maker?
Continued testing
42
How much have you thought about talking with your decision maker about how much flexibility you want to give a medical decision maker?
How much have you thought about talking with your loved one about the amount of flexibility he/she would want to give you as a medical decision maker?
Continued testing
43
How much have you thought about talking with your doctor about how much flexibility you want to give your decision maker?
How much have you thought about being part of a discussion with your loved one's doctor about the amount of flexibility you would have as the medical decision maker?
Continued testing
44
How much have you thought about talking with other friends and family about how much flexibility you want to give your decision maker?
How much have you thought about being part of a discussion with your loved one's other family and friends about the amount of flexibility you would have as the medical decision maker?
Continued testing
45
How confident are you that today you could talk with your decision maker about how much flexibility you want to give them as a medical decision maker?
As of today, how confident are you that you could talk with your loved one about how much flexibility he/she would want to give you as a medical decision maker?
Continued testing
46
How confident are you that today you could talk with your doctor about how much flexibility you want to give your medical decision maker?
As of today, how confident are you that you could be part of a discussion with your loved one's doctor about how much flexibility your loved one would want to give you as a medical decision maker?
Continued testing
47
How confident are you that today you could talk with your other family and friends about how much flexibility you want to give your medical decision maker?
As of today, how confident are you that you could be part of a discussion with your loved one's other family and friends about how much flexibility your loved one would want to give you as a medical decision maker?
Continued testing
48
How ready are you to talk to your decision maker about how much flexibility you want to give a medical decision maker?
How ready are you to talk to your loved one about how much flexibility he/she would want to give you as a medical decision maker?
Continued testing
49
How ready are you to talk to your doctor about how much flexibility you want to give your decision maker?
How ready are you to be part of a discussion with your loved one's doctor about how much flexibility your loved one would want to give you as a medical decision maker?
Continued testing
50
How ready are you to talk to your other family and friends about how much flexibility you want to give your medical decision maker?
How ready are you to be part of a discussion with your loved one's other family and friends about how much flexibility your loved one would want to give you as a medical decision maker?
Continued testing
51
How ready are you to sign official papers putting your wishes in writing about how much flexibility to give your decision maker?
How ready are you to help your loved one sign official papers about how much flexibility he/she would want to give you as a medical decision maker?
Continued testing
52
How well informed are you about the types of questions you can ask your doctor that will help you make a good medical decision?
How well informed are you about the types of questions you and your loved one can ask his/her doctor that will help them make a good medical decision for your loved one?
Excluded due to a lack of face validity
53
How much have you thought about questions you will ask your doctor to help make good medical decisions?
How much have you thought about questions you will ask your loved one's doctor to help make good medical decisions for your loved one?
Excluded due to a lack of face validity
54
How confident are you that today you could ask the right questions of your doctor to help make good medical decisions?
How confident are you that today you could ask the right questions of your loved one's doctors to help make good medical decisions for your loved one if your loved one was unable to speak for themselves?
Continued testing (italicized words were accidentally deleted from survey)
55
How ready are you to ask your doctor questions to help you make a good medical decision?
How ready are you to ask your loved one's doctor questions to help you make a good medical decision for your loved one if your loved one was unable to speak for themselves?
1. How well informed are you about who can be a medical decision maker?
Knowledge
Serving as surrogate decision-maker
2. How well informed are you about what makes someone a good medical decision maker?
Knowledge
Serving as surrogate decision-maker
3. How well informed are you about the types of decisions that you may have to make for your loved one in the future?
Knowledge
Serving as surrogate decision-maker
4. How much have you thought about your role as your loved one's medical decision-maker?
Contemplation
Serving as surrogate decision-maker
5. As of today, how confident are you that you could serve as your loved one's medical decision maker?
Self-efficacy
Serving as surrogate decision-maker
6. As of today, how confident are you that you could talk with your loved one about the care he/she would want if he/she were very sick or near the end of life?
Self-efficacy
Serving as surrogate decision-maker
7. As of today, how confident are you that you could be part of a discussion with your loved one's doctor about the care your loved one would want if he/she were very sick or near the end of life?
Self-efficacy
Serving as surrogate decision-maker
8. How much have you thought about talking with your loved one about whether or not there are certain health situations that would make your loved one's life not worth living?
Contemplation
Contemplation
9. How much have you thought about being part of a discussion with your loved one's doctors about whether or not there are certain health situations that would make your loved one's life not worth living?
Contemplation
Contemplation
10. How much have you thought about talking with your loved one about the care he/she would want if they were very sick or near the end of life?
Contemplation
Contemplation
11. How much have you thought about being part of a discussion with your loved one's doctors about the care he/she would want if they were very sick or near the end of life?
Contemplation
Contemplation
12. How ready are you to formally discuss with your loved one your role as their medical decision maker?
Readiness
Readiness
13. How ready are you to talk to your loved one about the kind of medical care he/she would want if they were very sick or near the end of life?
Readiness
Readiness
14. How ready are you to talk to your loved one about whether or not there are certain health situations that would make your loved one's life not worth living?
Readiness
Readiness
15. How ready are you to be part of a discussion with your loved one's doctor about whether or not there are certain health situations that would make your loved one's life not worth living?
Readiness
Readiness
16. How ready are you to be part of a discussion with your loved one's doctor about the kind of medical care your loved one would want if he/she were very sick or near the end of life?
Readiness
Readiness
17. How ready are you to ask your loved one's doctor questions to help you make a good medical decision for your loved one if your loved one was unable to speak for themselves?
Using a video-based advance care planning (ACP) website to facilitate group visits for diverse older adults in primary care is feasible and improves ACP engagement (TH307D).
Howard M RC, McKenzie M, Fyles G, et al. Effectiveness of an interactive website to engage patients in advance care planning in outpatient settings: a multicenter, prospective, before-after study. Ann Fam Med. [Under Review].
30041-7&id=gr1.jpg){kind=link}