Appendix 1.
Adaptation of the 55-item Patient-Oriented ACP Engagement Survey
| Item | Original Question (Patient Oriented) | Adapted Question (Surrogate Decision Maker oriented) | Group Decision After Phase 1 review |
|---|---|---|---|
| 1 | 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 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 (underline 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? | Continued testing |