Module 5: Data Collection

This training session contains information regarding: Audit Cycle Begins Audit Cycle Begins Questionnaire Administration Questionnaire Administration Institution Level Data Institution Level Data Patient/Family Member ACP Questionnaires Patient/Family Member ACP Questionnaires Interview Tips Interview Tips ACP Questionnaire Walk-through ACP Questionnaire Walk-through

Audit Cycle Begins

Audit Cycle #3 Fall 2014 Participating institutions may begin to recruit patients/family members and conduct the study before or after the start date, as long as they have the necessary resources and training to begin. There are 2 types of data collection to be conducted during each Audit Cycle: Institution Level Data Patient/Family Member Data

Questionnaire Administration Institution Level Data

Degree of System Implementation Collection of institutional data will allow for a comparison between those institutions with low and high degrees of system level implementation to determine if there is a higher prevalence of ACP and greater satisfaction of EOL communication and decision-making in institutions with higher degrees of system level implementation. This is done by completing the Degree of System Implementation questionnaire

There is one Degree of System Implementation Questionnaire: There is one Degree of System Implementation Questionnaire: Hospital - Unit Evaluation Hospital - Unit Evaluation

To be completed at the beginning of the audit cycle. The questionnaire should be completed by interview with the hospital staff member (Patient Care Coordinator, Manager) with responsibility for overall unit or specific involved program(s) from which the patients are recruited.

Questionnaire Administration Patient & Family Member ACP Questionnaire

Enrollment A total of 60 enrollments are expected at each participating institution during each Audit Cycle. There should be a minimum of 20 patients and 20 family member respondents. For example, a site may enroll 22 patient respondents and 38 family member respondents.

Enrolling Patients & Family Members at Different Times It may be difficult to enroll family members since they often have other obligations that take them away from the hospital during regular business hours. An option is to make initial contact with family members by telephone to arrange for a mutually agreeable time to meet.

We suggest you: Identify yourself as a member of the patient’s healthcare team Indicate the patient/family member is eligible for a study we are conducting about hospitalized elderly patients Indicate you would like to make an appointment with them to further discuss. We are not suggesting that consent be obtained by telephone; rather we are proposing to make the initial contact by telephone. Ensure you check with your ethics committee to ensure this strategy is acceptable

Interview Tips Have the appropriate version of the ACP Questionnaire on-hand (i.e. Pt or FM) Have the appropriate version of the ACP Questionnaire on-hand (i.e. Pt or FM) Use the respondent’s name Use the respondent’s name Introduce yourself and your role Introduce yourself and your role Ensure the respondent is ready and try to have a private location to conduct the interview Ensure the respondent is ready and try to have a private location to conduct the interview Ensure comfort and put the respondent at ease Ensure comfort and put the respondent at ease

~60 minutes May be conducted over a few shorter sessions The questionnaires should be administered in-person with the respondent. Do not give the questionnaires to the respondent to fill out at their leisure.

Read each question to the respondent. If the respondent does not understand, repeat the question. The researcher administering the questionnaire should not interpret the questions for the respondent. When the question is open-ended, do not paraphrase or change the respondent’s answer. Record the answer verbatim.

If the respondent says “I don’t know” provide them with the applicable laminated reference card. Ask the respondent to look at the options presented on the card. If the respondent ‘declines’ to respond to a particular question, make a note in the margin. You will be able to note this when entering the data into the database (see REDCap training module).

If both the patient and family member are enrolled, conduct the interviews as close to each other as possible. If the interview is started, then part way through the respondent withdraws their consent to continue do not discard the questionnaire. Questionnaires that are > 50% complete should be included. Questionnaires that are > 50% complete should be included. Questionnaires that are < 50% complete can not be included. Another patient will need to be enrolled to replace this respondent. Questionnaires that are < 50% complete can not be included. Another patient will need to be enrolled to replace this respondent.

Reference Cards Reference card templates are provided to participating institutions to assist with the administration of the questionnaire. These can shown to a respondent to assist them in answering a question. Ensure you use the correct card set for the type of respondent.

ACP Questionnaire Walk-Through

Questionnaire Breakdown

Enrollment # Interview Date Duration of interview

Section 1: Patient Demographics Enable us to adequately describe the patients involved in this study Enable us to adequately describe the patients involved in this study Will help us explain if certain types of patients are or are not involved in ACP Will help us explain if certain types of patients are or are not involved in ACP

Section 1: Demographics, Health Literacy Health Literacy is a key determinant to preferences for EOL treatment. We are using a validated short item questionnaire to measure health literacy, the REALM tool. Health Literacy is a key determinant to preferences for EOL treatment. We are using a validated short item questionnaire to measure health literacy, the REALM tool. Provide the respondent with the reference card (CARD 1) Provide the respondent with the reference card (CARD 1) Ask them to read down the list, pronouncing aloud as many words as they can. Ask them to read down the list, pronouncing aloud as many words as they can. Interviewer scores the number of correctly pronounced words Interviewer scores the number of correctly pronounced words

Section 1: Demographics, Ethnicity & Language Impact of ethnicity on access to healthcare resources Impact of ethnicity on access to healthcare resources Disparities are most related to whether you appear as a visible minority and speak another language, other than the 2 official languages of Canada. Disparities are most related to whether you appear as a visible minority and speak another language, other than the 2 official languages of Canada. Categorize patients/family members as to whether they appear to be Caucasian (by appearance) and by asking the patient/family member if the are proficient in another language other than English (or French if in Quebec). Categorize patients/family members as to whether they appear to be Caucasian (by appearance) and by asking the patient/family member if the are proficient in another language other than English (or French if in Quebec).

We will want to be able to categorize patients/family members into one of the 4 quadrants: We will want to be able to categorize patients/family members into one of the 4 quadrants:

Section 1: Frailty Index Consider the patient’s overall condition two weeks prior to admission to the hospital Consider the patient’s overall condition two weeks prior to admission to the hospital Some interviewers have noted that the patient’s response to this question differs from the family member’s response to this question. In the cases where there is a discrepancy between the respondent’s answers, always use the patient’s (self-report) response.

ACP Questionnaire: Family Member Section 1 Section 1 Family Member Demographics Family Member Demographics Patient Demographics Patient Demographics Frailty Index Frailty Index Section 2 Section 2 Section 3 Section 3 Section 4 Section 4 Section 5 Section 5 Section 6 Section 6 Complete if patient not enrolled in study

Section 2: Determinants of Decision Making Questions that may relate to the respondent’s preferences for EOL care Questions that may relate to the respondent’s preferences for EOL care We will analyze and to see if we can better understand the key determinants to preferred care at EOL. We will analyze and to see if we can better understand the key determinants to preferred care at EOL.

Lifetime Line - Question 6 Patient indicates where they see themselves between life and death. Patient indicates where they see themselves between life and death. Measure the distance from the Birth anchor to the patient’s mark. Round to the nearest millimeter. Measure the distance from the Birth anchor to the patient’s mark. Round to the nearest millimeter. 6.8

This is a particularly difficult question for respondents to answer. You can ask this question at a different point in the interview. You can ask this question at a different point in the interview. Some respondents are not able to make a mark but indicate verbally their response (e.g. 3 years left to live) or they simply can not provide a response. Please make note of this responses on the questionnaire: Some respondents are not able to make a mark but indicate verbally their response (e.g. 3 years left to live) or they simply can not provide a response. Please make note of this responses on the questionnaire: 1. Mark a line on the page, measure the distance 2. Enter a verbal response 3. Respondent could not answer

Section 3: Decisions About Your Health Care Prior to Hospitalization In this section, we are trying to ascertain whether the respondent has engaged in ACP PRIOR to hospitalization.

Section 3: Question 3 It is important that the respondent understand the concept of ‘life sustaining treatments’ first mentioned in questions #2, 3 and in subsequent questions. Before asking question #3 give the respondent CARD 3 which explains life sustaining treatment options, so we can be sure they know to what we are referring.

Section 3: Question 7 If the respondent has answered ‘yes’ they have discussed their preferences for using or not using life sustaining treatments with someone, proceed with asking the questions presented in the table. Each table row asks whether the respondent engaged in these with a specific individual (e.g. Family doctor, nurse, lawyer, etc…). If the response is ‘yes’, follow-up questions are asked regarding some of the details surrounding the discussion (e.g. how often, when they last spoke about this matter and under what circumstances).

Section 4: Goals of Care During Current Hospitalization This section is trying to determine the respondent’s perspective on communication and decision making about the use of life sustaining treatments while in hospital (during current hospitalization, not prior to hospital or previous hospitalization). If respondents refer to previous conversations outside the current hospitalization, please keep directing them back to conversations and events during the current hospitalization.

For each question in this section, you are asking the respondent ‘Did this happen, yes or no?” For each question in this section, you are asking the respondent ‘Did this happen, yes or no?” If ‘no,’ we want to know how important that issue is to the respondent. If ‘no,’ we want to know how important that issue is to the respondent. If ‘yes’ we want to know both how important and how satisfied they are with the issue. If ‘yes’ we want to know both how important and how satisfied they are with the issue.

Section 5: CANHELP Lite The CANHELP Lite questionnaire is a formal, validated satisfaction with EOL care measurement tool. The CANHELP Lite questionnaire is a formal, validated satisfaction with EOL care measurement tool. We are using the validated subscales pertinent to ACP We are using the validated subscales pertinent to ACP Literally read the instructions at the beginning of the questionnaire. Literally read the instructions at the beginning of the questionnaire. Also, explain that you are asking about their rating of care over the past month, regardless as to where the care occurred (at home, hospital or other location). Also, explain that you are asking about their rating of care over the past month, regardless as to where the care occurred (at home, hospital or other location).

Section 6: Barriers & Facilitators Section 6 offers the respondent an opportunity to share any barriers and/or facilitators they experienced concerning discussions with health care professionals about ACP. Record their responses verbatim.

Parting words to the respondent You have now completed the respondent interview portion of the ACP questionnaire. At the conclusion of the interview please thank the respondent for their time and candor in sharing information about this important topic. If the respondent requests more information regarding ACP please refer them to the appropriate individual on the ward (e.g. Social Worker). It is also advisable to make a Progress Note entry into the patient’s medical chart to alert any other members of the patient’s care team that an interview regarding ACP was conducted.

Section 7: Documentation of ACP/AD in Medical Chart The purpose of this section is to record any ACP/AD documents found on the medical record at the time of the interview. This data collection can occur either immediately before the interview or immediately after.

If both the patient and family member are interviewed, section 7 should be completed at the point of first contact. If both the patient and family member are interviewed, section 7 should be completed at the point of first contact. (i.e. after the first interview). If blank documents are found in the medical chart (e.g. goals of care form, tracking record or My Voice workbook) they should be indicated as ‘not present’ in Section 7 of the questionnaire. If blank documents are found in the medical chart (e.g. goals of care form, tracking record or My Voice workbook) they should be indicated as ‘not present’ in Section 7 of the questionnaire.

Some interviewers have noted that responses provided to them during the interview are not consistent with what is found documented in the medical chart. E.g. a patient indicates that they do not have any advance directives but a DNR form is found on the medical chart. This is an observational study, our role is to collect data and see what happens over the course of the patient’s stay. Do not intervene with the respondent and try to correct any inconsistencies. The only reason a study team member should intervene is if the patient experiences emotional/psychological trauma, induced by our interview, and help from the clinical team is required to deal with the situation.

Documentation Requirements Hard copies of all study documentation should be retained and filed Hard copies of all study documentation should be retained and filed Consent form Consent form Completed ACP Questionnaire Completed ACP Questionnaire Case Report Form (i.e. Chart Abstraction form). See Module 6. Case Report Form (i.e. Chart Abstraction form). See Module 6.

Training Module 5 Complete