Module 5: Module 5: Data Data

CollectionCollection

This training session This training session contains information contains information

regarding:regarding: Audit Cycle BeginsAudit Cycle Begins Questionnaire AdministrationQuestionnaire Administration

Institution Level DataInstitution Level Data Patient/Family Member ACP Patient/Family Member ACP

QuestionnairesQuestionnaires Interview TipsInterview Tips

ACP Questionnaire Walk-throughACP Questionnaire Walk-through

Audit Cycle Audit Cycle BeginsBegins

Audit Cycle #3 Fall 2014Audit 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 Questionnaire AdministrationAdministration

Institution Level DataInstitution Level Data

Degree of System Degree of System ImplementationImplementation

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

Patient & Family Member Patient & Family Member ACP QuestionnaireACP Questionnaire

EnrollmentEnrollment

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 & Enrolling Patients & Family Members at Family Members at

Different TimesDifferent 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:1. Identify yourself as a member of the patient’s

healthcare team.2. Indicate the patient/family member is eligible

for a study we are conducting about hospitalized elderly patients.

3. 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 TipsInterview Tips

Have the appropriate version of the ACP Have the appropriate version of the ACP Questionnaire on-hand (i.e. Pt or FM)Questionnaire on-hand (i.e. Pt or FM)

Use the respondent’s nameUse the respondent’s name Introduce yourself and your roleIntroduce yourself and your role Ensure the respondent is ready and try Ensure the respondent is ready and try

to have a private location to conduct the to have a private location to conduct the interviewinterview

Ensure comfort and put the respondent Ensure comfort and put the respondent at easeat ease

~60 minutes~60 minutesMay be conducted over a few May be conducted over a few

shorter sessionsshorter sessions

The questionnaires should be The questionnaires should be administered in-person administered in-person

with the respondent. with the respondent.

Do Do notnot give the questionnaires give the questionnaires to the respondent to fill out at to the respondent to fill out at

their leisure.their leisure.

Read each question to the respondent. If Read each question to the respondent. If the respondent does not understand, the respondent does not understand,

repeat the question. repeat the question.

The researcher administering the The researcher administering the questionnaire should not interpret the questionnaire should not interpret the

questions for the respondent.questions for the respondent.

When the question is open-ended, do When the question is open-ended, do notnot paraphrase or change the respondent’s paraphrase or change the respondent’s answer. Record the answer verbatim.answer. Record the answer verbatim.

If the respondent says “I don’t If the respondent says “I don’t know” provide them with the know” provide them with the applicable laminated reference card.applicable laminated reference card.

Ask the respondent to look at the Ask the respondent to look at the options presented on the card.options presented on the card.

If the respondent ‘declines’ to If the respondent ‘declines’ to respond to a particular question, respond to a particular question, make a note in the margin. You will make a note in the margin. You will be able to note this when entering be able to note this when entering the data into the database (see the data into the database (see REDCap training module).REDCap training module).

If both the patient and family If both the patient and family member are enrolled, conduct the member are enrolled, conduct the interviews as close to each other as interviews as close to each other as possible.possible.

If the interview is started, then part If the interview is started, then part way through the respondent way through the respondent withdraws their consent to withdraws their consent to continue do continue do notnot discard the discard the questionnaire. questionnaire.

Questionnaires that are Questionnaires that are >> 50% 50% complete should be included. complete should be included.

Questionnaires that are < 50% Questionnaires that are < 50% complete can complete can notnot be included. be included. Another patient will need to be Another patient will need to be enrolled to replace this respondent. enrolled to replace this respondent.

Reference CardsReference CardsReference card templates are Reference card templates are provided to participating institutions provided to participating institutions to assist with the administration of to assist with the administration of the questionnaire.the questionnaire.

These can shown to a respondent to These can shown to a respondent to assist them in answering a question.assist them in answering a question.

Ensure you use the correct card set Ensure you use the correct card set for the type of respondent.for the type of respondent.

ACP ACP Questionnaire Questionnaire Walk-ThroughWalk-Through

Questionnaire Questionnaire BreakdownBreakdown

Enrollment Enrollment ##

Interview Date

Duration of Duration of interviewinterview

Section 1: Patient Section 1: Patient DemographicsDemographics

Enable us to Enable us to adequately adequately describe the describe the patients involved patients involved in this study in this study

Will help us Will help us explain if certain explain if certain types of patients types of patients are or are not are or are not involved in ACPinvolved in ACP

Section 1: Section 1: Demographics, Health LiteracyDemographics, Health Literacy Health Literacy is a key determinant Health Literacy is a key determinant

to preferences for EOL treatment. We to preferences for EOL treatment. We are using a validated short item are using a validated short item questionnaire to measure health questionnaire to measure health literacy, the REALM tool. literacy, the REALM tool. Provide the respondent with the Provide the respondent with the

reference card (CARD 1)reference card (CARD 1) Ask them to read down the list, Ask them to read down the list,

pronouncing aloud as many words as pronouncing aloud as many words as they can.they can.

Interviewer scores the number of Interviewer scores the number of correctly pronounced wordscorrectly pronounced words

Section 1: Section 1: Demographics, Ethnicity & Demographics, Ethnicity &

LanguageLanguage Impact of ethnicity on access to Impact of ethnicity on access to

healthcare resourceshealthcare resources Disparities are most related to whether Disparities are most related to whether

you appear as a visible minority and you appear as a visible minority and speak another language, other than the speak another language, other than the 2 official languages of Canada. 2 official languages of Canada.

Categorize patients/family members as Categorize patients/family members as to whether they appear to be Caucasian to whether they appear to be Caucasian (by appearance) and by asking the (by appearance) and by asking the patient/family member if the are patient/family member if the are proficient in another language other proficient in another language other than English (or French if in Quebec).than English (or French if in Quebec).

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

Section 1: Frailty IndexSection 1: Frailty Index Consider the patient’s overall condition Consider the patient’s overall condition

two weeks prior to admission to the two weeks prior to admission to the hospitalhospital

Some interviewers have noted that the Some interviewers have noted that the patient’s response to this question differs patient’s response to this question differs from the family member’s response to from the family member’s response to this question. In the cases where there this question. In the cases where there is a discrepancy between the is a discrepancy between the respondent’s answers, always use the respondent’s answers, always use the patient’s (self-report) response.patient’s (self-report) response.

ACP Questionnaire: Family ACP Questionnaire: Family MemberMember

Section 1Section 1 Family Member DemographicsFamily Member Demographics Patient DemographicsPatient Demographics Frailty IndexFrailty Index

Section 2Section 2 Section 3Section 3 Section 4Section 4 Section 5Section 5 Section 6Section 6

Complete if patient not enrolled in study

Section 2: Section 2: Determinants of Decision Determinants of Decision

MakingMaking Questions that may Questions that may

relate to the relate to the respondent’s respondent’s preferences for EOL preferences for EOL carecare

We will analyze and to We will analyze and to see if we can better see if we can better understand the key understand the key determinants to determinants to preferred care at EOL.preferred care at EOL.

Lifetime Line - Question 6Lifetime Line - Question 6

Patient indicates where they see themselves Patient indicates where they see themselves between life and death.between life and death.

Measure the distance from the Birth anchor Measure the distance from the Birth anchor to the patient’s mark. Round to the nearest to the patient’s mark. Round to the nearest millimeter.millimeter.

6.8

This is a particularly difficult question This is a particularly difficult question for respondents to answer. for respondents to answer.

You can ask this question at a different You can ask this question at a different point in the interview.point in the interview.

Some respondents are not able to make a Some respondents are not able to make a mark but indicate verbally their response mark but indicate verbally their response (e.g. 3 years left to live) or they simply (e.g. 3 years left to live) or they simply can not provide a response. Please make can not provide a response. Please make note of this responses on the note of this responses on the questionnaire:questionnaire:

1.1. Mark a line on the page, measure the Mark a line on the page, measure the distancedistance

2.2. Enter a verbal responseEnter a verbal response

3.3. Respondent could not answerRespondent could not answer

Section 3: Decisions About Section 3: Decisions About Your Health Care Your Health Care Prior toPrior to

HospitalizationHospitalization In this

section, we are trying to ascertain whether the respondent has engaged in ACP PRIOR to hospitalization.

Section 3: Question 3Section 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 7Section 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 Section 4: Goals of Care During During CurrentCurrent HospitalizationHospitalization

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 For each question in this section, you in this section, you are asking the are asking the respondent ‘Did respondent ‘Did this happen, yes this happen, yes or no?”or no?” If ‘no,’ we want to If ‘no,’ we want to

know how know how important that important that issue is to the issue is to the respondent.respondent.

If ‘yes’ we want to If ‘yes’ we want to know both how know both how important and how important and how satisfied they are satisfied they are with the issue.with the issue.

Section 5: CANHELP LiteSection 5: CANHELP Lite

The CANHELP Lite questionnaire is a The CANHELP Lite questionnaire is a formal, validated satisfaction with EOL formal, validated satisfaction with EOL care measurement tool. care measurement tool. We are using the validated subscales We are using the validated subscales

pertinent to ACPpertinent to ACP Literally read the instructions at the Literally read the instructions at the

beginning of the questionnaire. beginning of the questionnaire. Also, explain that you are asking about Also, explain that you are asking about

their rating of care over the past month, their rating of care over the past month, regardless as to where the care occurred regardless as to where the care occurred (at home, hospital or other location).(at home, hospital or other location).

Section 6: Barriers & Section 6: Barriers & FacilitatorsFacilitators

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 Parting words to the respondentrespondent

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 Section 7: Documentation of ACP/AD in Medical Chartof 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 If both the patient and family member are interviewed, section 7 should be are interviewed, section 7 should be completed at the point of completed at the point of firstfirst contact. contact.

(i.e. after the first interview). (i.e. after the first interview).

If blank documents are found in the If blank documents are found in the medical chart (e.g. goals of care form, medical chart (e.g. goals of care form, tracking record or My Voice tracking record or My Voice workbook) they should be indicated as workbook) they should be indicated as ‘not present’ in Section 7 of the ‘not present’ in Section 7 of the questionnaire.questionnaire.

Some interviewers have noted that responses Some interviewers have noted that responses provided to them during the interview are not provided to them during the interview are not consistent with what is found documented in the consistent with what is found documented in the medical chart. medical chart. E.g. a patient indicates that they do not have any E.g. a patient indicates that they do not have any advance directives but a DNR form is found on advance directives but a DNR form is found on the medical chart. the medical chart.

This is an observational study, our role is to This is an observational study, our role is to collect data and see what happens over the collect data and see what happens over the course of the patient’s stay. Do not intervene course of the patient’s stay. Do not intervene with the respondent and try to correct any with the respondent and try to correct any inconsistencies.inconsistencies.

The only reason a study team member The only reason a study team member should intervene is if the patient should intervene is if the patient experiences emotional/psychological experiences emotional/psychological trauma, induced by our interview, and help trauma, induced by our interview, and help from the clinical team is required to deal from the clinical team is required to deal with the situation.with the situation.

Documentation Documentation RequirementsRequirements

Hard copies of all study Hard copies of all study documentation should be retained documentation should be retained and filedand filed Consent formConsent form Completed ACP QuestionnaireCompleted ACP Questionnaire Case Report Form (i.e. Chart Case Report Form (i.e. Chart

Abstraction form). See Module 6.Abstraction form). See Module 6.

Training Module 5 Training Module 5 CompleteComplete