Outcome Study FAQ's

What is the Outcome Study?
The purpose of the SAGE System of Care is to develop a system of care in a local community. The outcome study is to determine if the system of care helps families and how services change after the system of care is implemented. With this information communities can continuously make changes that are needed to improve outcomes for children and their families with severe emotional disabilities (continuous quality improvement). Participation in the Outcome Study is a way for families and youth to let their voices be heard about what youth with severe emotional disabilities need.

What is the National outcome study?
When local families participate in the outcome study, their data are part of a National outcome study. There are two components to the National outcome study - the cross-sectional descriptive study based upon the enrollment form and the longitudinal outcome study based upon periodic interviews with families. Neither the descriptive study nor the longitudinal study contains any personally identifiable information.

The information in both studies will be used to generate new knowledge about the most effective ways to meet the needs of children with serious emotional disturbances and their families. It will determine how systems of care develop and what factors impede or enhance their development, if the children served by the program experience improvement in clinical and functional outcomes, if these improvements endure over time, whether the program can be associated with reduction in residential treatment and if consumers are satisfied with the services they receive. The outcome study is designed to maintain accountability and address the pressing need for information upon which to base programmatic, funding, and policy decision.

What is the Local outcome study?
The purpose of the local outcome study is to provide information that supports the project management and decisions about care and services. It is a type of continuous quality improvement. The outcome study team (evaluators) gets summary information from the national outcome study. It is then passed on to your community and it can be used to guide service delivery, to inform decisions, to develop and refine the service array, to monitor quality of services, and to achieve sustainability and refinancing. It can support state and regional level information in service needs and delivery to facilitate program planning. It can support national efforts at service improvement and service funding.

Again, when families participate in the outcome study, the information the families provide will be used to help guide system of care teams to better serve youth with severe emotional disabilities, their families, and the community. Aggregate information will be reported in a newsletter format to youth, families, the community, and policy decision makers at the state level about how the system of care is progressing and how it is effecting these youth and families.

How do families become involved in the outcome study?
Each community has identified a person to introduce the Outcome Study and to coordinate services community. Each community will identify the person who will provide the Outcome Study (OCS) staff with demographic information on a form called the EDIF (enrollment demographic information form). Families will be asked to sign a release to give permission for the Outcome Study (OCS) staff to contact families interested in participating in the outcome study. The outcome study staff will call families to explain the outcome study and answer questions they may have. If the family is still interested in joining the outcome study, the staff person will set up a time for the interview.

By providing the Outcome Study staff with information, families can help us understand what changes are necessary to improve the System of Care program. Families that agree to join the outcome study will be contacted by outcome study staff every 6 months for 3years. This will help us understand what changes need to be made for long-term improvement in children using the System of Care (SAGE System of Care).

In addition to being participants in the outcome study, families and youth may be asked to participate in a CQI (continuous quality improvement) focus group. The focus group will help provide your outcome study team with feedback on research design, incentives provided for participation, appropriate ways for OCS staff to contact families, interpreting data to provide reports, reporting back to families, SOC teams, and communities, and overall satisfaction. The opinions of families and youth involved in the outcome study are important to us.

Also you may be periodically asked to give feedback on how your interviews are going. The questions will help ensure that you are being treated respectfully and ethically by your interviewers.

What is the EDIF (enrollment demographic information form)?
The enrollment demographic information form or EDIF is a short form filled out by your care coordinator upon your entry into the SAGE System of Care. It provides your community and the national evaluator with descriptive information about who is served by the program, and how that changes over time. This is the primary tool in the cross-sectional descriptive study.

Does everyone have to have an EDIF?
Yes, everyone who enrolls into the system of care has to complete an EDIF. We ask your consent to enter this information into the national outcome study dataset. If, however, a family refuses to provide consent a Child ID must still be assigned to the child, and an EDIF must be submitted with an explanation given for why demographic information is not provided.

The outcome study team will cross check children’s names in an EDIF database so that two child IDs are not assigned to the same child if the child leaves and returns to services

Does everyone have to participate in the outcome study?
No. The outcome study is completely voluntary. However, it is a perfect opportunity for families to have some input into how their services are affecting their outcomes.

Having families enrolled in the outcome study provides communities with a useful data to support funding to continue the system of care activities.

Who is interviewed?
We would like to interview the person who had the most responsibility for taking care of the child in the last 6 months. We know that more than one person cares for the children in many families, but we will interview the one with primary responsibility. Also, youth age 11 and older can be interviewed with permission of a parent or legal guardian. We would prefer their interviews to be separate from their caregivers to help us obtain accurate information.

What types of questions are in the interview?
We ask the caregiver about behavioral problems, functioning, education-related, behavioral & emotional strengths, family life situation, living situation, and child service history prior to entering the System of Care.

We ask the youth about behavioral & emotional strengths, substance use, delinquency, depression and anxiety, peer support, and exposure to violence. In follow-up visits, we also ask caregivers and youth about their satisfaction with service experiences. We will also be collecting demographic and descriptive information about families like ethnicity, custody status of youth, difficulties youth might be having etc.

Youth & Family FAQ's

Is the study confidential?
The Outcome study is completely confidential. If you choose to participate a random number will be assigned to your information and no names will be tied to the data we receive. Only the Outcome study staff will have access to individual answers (even a judge can not force us to share your information). Information collected from families will be reported as group data, no individual or identifying information will be used. Service providers and caregivers will not have access to information provided by the youth.

There are circumstances under which information provided may not be confidential if harm to a child, self or others is suspected; it will be reported to the proper authority. If child abuse or neglect is suspected it is required by law that it be reported, as written under Wyoming State Statute Title 14-3-205. Any person who knows or has reasonable cause to believe or suspect that a child has been abused or neglected or who observes any child being subjected to conditions or circumstances that would reasonably result in abuse or neglect shall immediately report it to the child protective agency or local law enforcement agency or cause a report to be made.
 
How do I know my rights and welfare are protected when I participate?
The description of the outcome study have been submitted as a proposal and approved by the Institutional Review Board (IRB) of the University of Wyoming and the Wyoming Department of Health.

The purpose of an IRB review is to assure, both in advance and by periodic review, that appropriate steps are taken to protect the rights and welfare of humans participating as subjects in a research study. To accomplish this purpose, IRBs review research protocols and related materials (e.g., informed consent documents and investigator brochures) to ensure protection of the rights and welfare of human subjects of research. The chief objectives of every IRB review are to assess the scientific merit of the research and its methods, to promote fully informed and voluntary participation by prospective subjects who are themselves capable of making such choices (or, if that is not possible, informed permission given by a suitable proxy) and to maximize the safety of subjects once they are enrolled in the project.

How much time will it take?
Caregiver interviews will take between 1 ½ hours and 2 hours. Youth interviews will take about an hour. We will contact families every 6 months to conduct an interview for up to three years.

How will my family and/or child be compensated for our time?
We know your time is valuable and to acknowledge that we will provide you with compensation for your time. Caregivers participating would receive $50 for the initial interview, $25 for each subsequent interview, and $100 for your final interview for a total of $250. If your child is 11 years old or older, they’d like to ask him/her some questions in a separate interview. That interview will take about an hour, and your child will also receive a gift certificate for every interview completed. Your child would receive $10 at each interview for a total of $60.

When do you do the interviews?
We know that families have busy lives. If families cannot meet us on a weekday, we can set up an evening or weekend interview.

Where do you do the interviews?
We want to make participation in the outcome study easy for families. We plan to conduct most outcome study interviews in the homes of participants. If a participant would like to meet somewhere else, we can help find a private room in a local school, library, or other facility close to their home or work.

What happens to the outcome study information?
The Outcome study team will send information to the national outcome study team. Each child has a unique number, but only the Outcome Study Team can link the number to child, the nation outcome study team can not. The national team will use national data to provide periodic reports to CMHS and SAMHSA to justify funding request to Congress. They will also use the data to produce presentations and reports for CMHS audiences including the advisory body to the national outcome study, present findings at conferences, and publish finding in journal, reports, and books.

The outcome study team will also use the data to compile reports for state and local level reporting that includes what your community needs and is achieving. It will provide feedback to service providers and families, monitor quality of services delivered, inform decision making, and guide service delivery practices.

Data will be stored by the outcome study team for one year after the grant ends in 2010. Data with the national outcome study might be stored for a longer period of time; however, there is no way for them to identify who that data came from.

Why is it important to have families participate in the outcome study?
Assessing improvement for children and families provides evidence for the effectiveness of systems of care in your community and for the whole program. It’s important to know how children and families change because of the services they receive. It’s important to know if the system of care philosophy works. Knowing that families and children see the system of care services as valuable helps everyone know that the program has an important place in our communities and nation. When you participate in the outcome study you are helping to make changes for children in the future and some immediate changes that might benefit you and your family.

How will I know when it is time to for my next interview?
Using information you provided during your initial interview, the Outcome Study Team will send you a letter approximately one month before your next scheduled interview. The letter will ask you to contact the outcome study staff to schedule an interview, or if it is agreed upon the OCS staff may pre-set the date and time and ask for your confirmation. If the OCS person does not hear back from you they may try contacting you by telephone a few weeks before the interview is due. You will be filling out a locator form, so the outcome study staff will not make attempts to contact you in any way you do not feel comfortable with.

What if I want to stop participating?
Although the information youth and families provide is very important, we understand that families have busy lives and unexpected things happen that might make it necessary for you to discontinue your participation in the outcome study. If at anytime you wish to no longer participate please let your evaluator know so we can discontinue contacting efforts.

Family Care Coordinator FAQ's

How long do I have to turn in the EDIF?
Outcome Study team needs the EDIF within thirty days of your first meeting with a family. We also need to complete a baseline interview with them in the same thirty days if they are going to participate in the outcome study. The sooner we get a baseline interview done the more useful the data will be that we provide your community. So as soon as possible after your first meeting with a family get the EDIF to the OCS staff.

What if the Diagnosis is deferred?
We can still put this on an EDIF form, but the child will be ineligible for the longitudinal outcome study because of the 30 day window we are given to complete baseline interviews to collect data.

Can we use V codes?
No, we can use DSM-IV codes and ICD-9 codes, but this does not include v-codes for a diagnosis.

Where can I get information for the EDIF?
This information can come from any administrative form you have access to, you can ask the caregiver themselves, some answers may be found on the your intake form, and some information can be filled in by the outcome study staff if you can not find the information and the family is going to participate in the longitudinal outcome study. The EDIF is the only form that can be modified after turning it in to the national database, but please find as much of this information as possible upon intake.

If a child does not qualify for the outcome study can they still be enrolled in the SOC?
Absolutely! The requirements of a diagnosis of SED, impaired functioning, multi-agency involvement, age range, and the presence of this disability for a year or more are requirements of the outcome study, but not necessarily of the system of care (SAGE). The requirements for enrollment into the system of care will depend on the specific community and it is possible that a child will not fit into both.

What if a child’s sibling is enrolled in the outcome study?
Only one child per family may be enrolled in the longitudinal outcome study. We are aware that families may have more than one child enrolled in the system of care (SAGE) the decision as to which child will participate in the outcome study, if eligible, will be left to the family.