1. MFP: California Community Transitions Quality of Life (QoL) Survey

2. MFP: Quality of Life Survey Survey development funded by Centers for Medicare and Medicaid Services (CMS) under contract HHSM-500-2005-000251 (0002). Prepared by Sloan, Matt, and Carol Irvin. Money Follows the Person Quality of Life Survey. Prepared for CMS. Washington, D.C.: Mathematica Policy Research, Inc., 2007.

3. QoL Survey Designed to measure seven domains: Living situation Choice and control Access to personal care services Respect/dignity Community integration/inclusion Overall life satisfaction Health Status

4. QoL Survey (Continued) The questionnaire is based on the Participant Experiences Survey (PES), which is widely used for assessing quality of life. The questionnaire is a standardized survey and must be administered the same way to each MFP participant in every state.

5. QoL Survey (continued) The MFP Quality of Life survey covers: –Participants’ freedom of choice and control –Satisfaction with housing, care, and life –Access to care and unmet needs –Feelings about being treated with adequate respect and dignity –Ability to engage in and enjoy activities

6. QoL Survey (continued) CCT participants will be interviewed three times: –At “Baseline”: after they have been accepted into the CCT but just before they are discharged from the facility. –At “First follow-up”: about 11 months after discharge to the community. –At “Second follow-up”: about 24 months after discharge to the community.

7. QoL Survey (continued) Required by CMS for CCT Participants. The same instrument will be used for all participants. Designed in a question by question (QxQ) format. 42 scripted questions. A few are asked only before or after transition, the rest are asked at all three interviews. **Review the questions with interviewers carefully before they attempt to conduct any interviews.

8. Importance of Study To help states evaluate how well the MFP Initiative is meeting the needs of participants, and what changes may need to be made to improve the program. To collect information on participants’ quality of life is of particular importance given the purpose of the MFP Initiative being to improve quality of life. To summarize results of Initiative to Congress.

9. QoL Target Population Persons with disabilities and long-term health conditions who are transitioning from institutionalized care setting to receiving services in the community.

10. Module 1: Making Contact

11. Call the program participant or facility to arrange an interview. –Consider an advance letter. –Use a script, tailored to the situation, to contact the program participant and introduce yourself and the QOL survey. –Verify that you are interviewing the correct person. –Accommodate other obligations in the participant’s life.

12. Making Contact (continued) Multiple attempts should be made to contact participants. In general, up to 15 attempts should be made. These attempts should be made at different times and on different days in order to find a time that the participant can complete the survey. After 15 attempts, the case should be reviewed to determine if it is viable.

13. Module 2: Good Interviewing Techniques

14. Good Interviewing Techniques Make contact and ask permission to speak with and interview participant. Show respect for the lives and privacy of the people with whom you interact. Establish rapport and gain cooperation using the same skills as when conducting the Preference Interview Tool.

15. Participant in Immediate Danger Despite any pledge of confidentiality interviewers may have made, they may be required by law to report incidents of abuse or neglect. This must be explained to participants.

16. Health Issues of concern when Interacting with People who Have Special Health Care Needs Fatigue Cognitive Impairment

17. Fatigue Participant may tire easily. Assess Participant’s ability to continue as the interview progresses. If you are unsure if person is feeling tired, ask!

18. Fatigue (continued) Examples of probing questions to determine if participant is fatigued: Are you feeling tired or can we continue? Would you like to take a break? Would you like to continue the interview another time?

19. Cognitive Impairment Some participants may have: –Difficulty processing questions and responses. –Lack of complete or specific knowledge. –Confusion about the role of the interview.

20. Cognitive Impairment (continued) Use probes or repeat the question text if the participant does not understand the question. Help keep the participant free from distractions. Say the participant’s name often to keep their attention and focus on the interview.

21. Cognitive Impairment (continued) Speak slowly and clearly, but don’t exaggerate the inflection or tone of your voice. –Exaggerations call attention to themselves rather than what you are saying and can be distracting and confusing.

22. Cognitive Impairment (continued) Check frequently to be sure the participant understands you. –It is usually not helpful to ask, “Do you understand?” Instead, try asking the participant to repeat the question.

23. Cognitive Impairment (continued) Be an active listener and provide neutral feedback such as “I see” or “I understand.” –These phrases indicate that you are interested and will encourage the participant. Be prepared to wait. People with cognitive impairments may process information slowly. –Do not attempt to finish sentences for the participant.

24. Module 3: The Interview

25. Introduce Yourself and the Survey Remind the participant: The purpose of the survey. That there are no “correct” answers. Responses will not affect care or benefits. Best guesses are okay. Allow time to answer any questions the participant may have before starting. Do not rush the respondent.

26. The Interview (continued) Interviewers should be clear about the purpose of the visit: to administer the survey instrument. The interviewer’s goal is to gather information only; requests for assistance, or complaints about existing services should be directed to the participant’s service manager.

27. Before You Begin the Questions Your focus needs to be on the questionnaire and the participant. Check to make sure you and participant are comfortable before starting.

28. During the Interview (continued) Check partway through the questions to see if participant is tiring. If participant is too tired to continue, schedule another session to complete the survey. Complete the questions if participant agrees. Close the interview. Thank the person for providing the information.

29. Module 4: Administering the Survey

30. Participants are the best judge of their experiences and should be allowed to respond to question whenever possible. If this is not possible: –The participant can be assisted by a friend or family member to complete the survey (i.e., an “assisted” interview). –The interview can be conducted with a proxy who is very familiar with the participant’s situation and agrees to answer on the participant’s behalf.

31. Administering the Survey Ask every question, unless a skip pattern indicates to do otherwise. When in doubt about whether a question should be skipped, ask the question. Participants may choose not to answer any question they wish. Do not leave any questions blank. If the participant has no answer at all, record “No Response.”

32. Administering the Survey (continued) Ask the questions exactly as they are written. Do not reword questions. Try to clarify unclear answers using probes or the QxQ overview of the survey. Record only responses provided by the participant when he or she is being interviewed. Be sensitive to the participant’s physical and emotional state.

33. Ending the Interview At the end of the interview, thank the participant for his or her participation. Leave contact information so that the participant can contact someone knowledgeable if she or he has additional questions.

34. How the Surveys Will Be Conducted Baseline interviews will be conducted in person electronically, using a laptop computer or by hand, using hard copy. The survey has been translated into Spanish Baseline interview will be conducted while the resident is in the facility shortly before discharge.

35. How the Surveys Will Be Conducted (continued) Participants who refuse to complete the survey should not be contacted for two weeks and a review made to determine the best follow up approach. After two weeks, experienced interviewers should attempt to interview the participant. If the participant refuses to complete the survey a second time, no more attempts should be made. The survey should be listed as “participant refused”.

36. Participant Does Not Understand the Questions Asked Try a few questions with the participant to assess whether he or she will be capable of responding. –If the participant understands the questions but takes a long time to answer them, a proxy is probably not necessary. –If the participant does not understand the questions or gives answers that don’t seem relevant, seek a proxy.

37. Participant Does Not Understand the Questions Asked (Continued) Determine whether an accommodation, such as language interpreter or taking breaks, would help the participant do the survey. Ask if there is someone available who can help answer certain questions, and if so, proceed with an assisted interview. If an assisted interview is not possible, identify a person who is familiar with the participant’s day- to-day life and proceed with a proxy interview.

38. The Participant Requests a Proxy Gently encourage the participant to participate. If the participant still feels uncomfortable, offer an assisted interview. If the participant still does not want to participate, identify a person who is familiar with the participant’s day-to-day life and proceed with a proxy interview.

39. Module 5: Assisted and Proxy Interviews

40. When Is a Proxy or Assisted Interview Necessary? The beneficiary wants to do the interview, but the interviewer thinks that he or she will not be able to understand the questions. The beneficiary requests that a proxy complete the interview for them. A family member or informant indicates that the participant cannot complete the interview on his or her own.

41. Family Member Says Participant Can’t Do the Interview Tell the family member it’s important to hear from the participant directly, if possible. Ask the family member if they would be willing to assist the participant in responding. If an assisted interview is not possible, proceed with a proxy interview with the family member.

42. Conducting a Proxy Interview When conducting a proxy interview remember that: –The objective is to obtain the participant’s point of view, not the proxy’s point of view. You will need to instruct the proxy. –The questions will need to be modified slightly for proxy respondents. –Proxy interviews should not be conducted for participants who have died.

43. Module 6: Survey Data Collection

44. QoL Survey Data Collection Information collected from each survey administered will remain confidential, unless release is required by law for health and safety issues. Information will be: Stored securely by DHCS CCT staff. Coded so data is anonymous. Forwarded to CMS for research purposes.

45. The Survey Questionnaire Module 7:

46. Survey Sections Module 1: Living Situation Module 2: Choice and Control Module 3: Access to Personal Care Module 4: Respect and Dignity Module 5: Community Integration and Inclusion Module 6: Overall Life Satisfaction Module 7: Health Status

47. Review of Survey Questions Let’s look at the questionnaire itself. Take the survey yourself.

48. Interview Practice

49. Questions and Discussions