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The Psychosocial Assessment Tool (PAT2.0)

Thank you for your interest in the Psychosocial Assessment Tool, Version 2.0 (PAT2.0). The PAT2.0 is a brief screener used for assessing psychosocial risk in families of children newly diagnosed with cancer. This packet contains: PAT 2.0 Overview, including o Background on the development of the PAT2.0 o Information on using the PAT2.0 o Bibliography o User Information Form (This form should be completed and returned prior to using the PAT) o SAMPLE Copy - PAT2.0 Assessment ­ English We also have available: o o o o o o Guidelines for translating the PAT2.0 into other languages Guidelines for adapting the PAT2.0 for other patient populations Scoring guide and scoring form (MS Word and Excel versions) Sample Report Forms, including Quarterly Report Form (required by our funding source) and the Annual Collaborator Report Form. PAT2.0 Assessment ­ Spanish Journal of Pediatric Psychology article on the psychometric properties of PAT 2.0

The development of the PAT2.0 was supported by a grant from the National Cancer Institute (CA98039). The dissemination of PAT2.0 is supported by the Center for Pediatric Traumatic Stress (CPTS), part of the National Child Traumatic Stress Network (NCTSN), with funding from the Substance Abuse and Mental Health Services Administration (SM058139). For questions or more information, please contact Stephanie Schneider, MS at the Center for Pediatric Traumatic Stress (CPTS) for questions/more information: [email protected] If you are interested in using the PAT2.0 as a clinical assessment tool at your institution, please complete the User Information / Agreement Form contained in this package. We will review your form and send you scoring materials upon approval. You may email the form to: Stephanie Schneider, MS, at [email protected] or fax 215-590-3020. If you have questions about using the PAT2.0 as part of a research project, contact Anne E. Kazak, PhD, ABPP at [email protected]

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The Psychosocial Assessment Tool (PAT2.0)

Background Development of the PAT began in 1996, prompted by concerns about changes in healthcare in the United States and impending challenges in assuring high quality psychosocial care for children with cancer and their families in an era of limited resources and cost containment. Now, more than a decade later and despite numerous recommendations for the provision of psychosocial support to families of children with cancer, systematic psychosocial assessment is conducted inconsistently across pediatric oncology treatment centers. Evidence-based assessment is an essential first step in identifying family needs and targets for intervention. The PAT2.0 provides a means by which such evaluation can be conducted in a brief, user-friendly format. The PAT is based on the Pediatric Preventative Psychosocial Health Model (PPPHM, Figure 1; Kazak, 2006), a public health preventative model. Following from the research literature, the majority of families of children newly diagnosed with cancer are understandably distressed but are competent and generally capable of coping and adapting to their illness and treatment demands (Universal). A smaller subset of families are at elevated risk (Targeted) and a small subset experience elevated and/or escalating distress (Clinical). A multidisciplinary group of psychologists, social workers, child life specialists, nurses, educators, and pediatric oncologists in the Division of Oncology at The Children's Hospital of Philadelphia (CHOP) developed PAT. The 20-item screener was tested in two studies, each with over 100 families. The results supported the feasibility of screening and showed that psychosocial distress at diagnosis was associated with higher levels of later distress and related resource utilization (Kazak, Cant et al, 2003; Kazak, Prusak et al., 2001). We revised the PAT, resulting in PAT2.0. A study was conducted to further establish the reliability and validity of the measure at CHOP and also at the Royal Children's Hospital in Melbourne, Australia. The data are supportive of the psychometric properties of PAT2.0. For example, at the CHOP site, the PAT2.0 has strong internal consistency for the Total Score ( = .81) and the subscales. Validation with standardized measures of child, parent and family function are strong and in the expected directions. A manuscript on the psychometrics of the PAT 2.0 is available and is included in this packet (Pai et al., 2008). Data on the predictive validity of the PAT2.0 will be available in 2009. Figure 1.

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The Psychosocial Assessment Tool (PAT2.0)

Using the PAT2.0

We are pleased that you are interested in using the PAT2.0. There is no charge for the assessment and other materials related to PAT2.0. In exchange, we need your collaboration to continue advancing knowledge regarding the screener's effectiveness, utility, and implementation. We ask your agreement with the following: 1. Agreement: Complete the attached Information/Agreement form. We will grant approval to use the PAT2.0 and send you the scoring materials, after we receive and review your completed information. Your signature indicates your agreement to collaborate with us on the PAT2.0 as noted. 2. Distribution of PAT2.0: Do not distribute the PAT2.0 to others without our permission. 3. Contact Information: Please indicate who is responsible for overseeing the use of the PAT2.0 at your institution and provide updated contact information in the event of personnel changes. 4. Quarterly Usage Data: On a quarterly basis, we will ask you to provide us with data on the number of families screened and some basic demographic information about them. This data is required by our funding source. 5. Implementation and Evaluation: We are happy to consult with and assist you in conducting research using the PAT2.0 and on the process of implementing the PAT2.0 in practice. 6. Using PAT2.0 with non-oncology patient populations: We ask that you follow our established guidelines if you wish to use of the PAT in non-oncology samples. While the PAT2.0 was designed and validated for use in pediatric oncology, we are also interested in evaluating its applicability to other pediatric populations. 7. Adding your institutional logo: If you would like to add your own institutional logo to the PAT2.0 form, we will send you a version that can be graphically modified, with the words: "Adapted with permission from a copyrighted scale from the Division of Oncology, The Children's Hospital of Philadelphia." We ask that you send us a copy of your modified form for review before you use it. 8. Other Languages / Translation: The PAT2.0 is available in English and Spanish translations. We are working with other institutions on additional translations and have established guidelines for the process of translating PAT2.0 into other languages. 9. Research use of PAT2.0: Please provide us with a brief summary of your current or proposed research using the PAT2.0, highlighting the study question, design, sample, and outcome measures. In addition to the quarterly report, we will ask you to complete a brief annual report summarizing your study progress and data you have collected, including any papers, posters or manuscripts that reported on your use of the PAT2.0 (see report samples in this packet). 10. Clinical use of PAT2.0: If you plan to use the PAT2.0 clinically, please provide us with a brief description of your setting and the patient population. We are available to consult with you on its use. In addition to the quarterly report, we will ask you to complete a brief annual report, including the number and types of patients/settings and describing your experience in using it (see report samples in this packet). 11. Other forms related to the PAT study: As part of our PAT2.0 study, we created additional forms to assess resource utilization and staff perceptions of family risk, which may be helpful to you in your research or in evaluating the use of PAT2.0 clinically in your institution. 12. Updates on PAT 2.0: We communicate and collaborate with PAT2.0 users on a regular basis regarding its implementation and evaluation. We will provide you updated information on the PAT2.0 as it becomes available, and invite you to become a member of our PAT2.0 users group, which allows users from different institutions using PAT to communicate with, ask questions, and learn from each other. 3

The Psychosocial Assessment Tool (PAT2.0)

Bibliography:

Clarke, N., McCarthy, M., Golshevsky, D., Vance, A., Heath, J., Donwie, P. (2006, May). Identifying psychosocial risk in families of newly-diagnosed pediatric oncology patients. Poster presented at the Annual Scientific Meeting of the Australia and New Zealand Haematology/Oncology Group (ANZCHOG).

This poster reports initial data from a study of the PAT2.0 at Royal Children's Hospital in Melbourne, Australia.

Kazak, A. E. (2006). Pediatric Psychosocial Preventative Health Model (PPPHM): Research, practice and collaboration in pediatric family systems medicine. Families, Systems and Health, 24, 381-395.

Provides an overview of the PPPHM and discusses its application in collaborative pediatric healthcare.

Kazak, A., Cant, M. C., Jensen, M., McSherry, M., Rourke, M., Hwang, W. T., et al. (2003). Identifying psychosocial risk indicative of subsequent resource utilization in families of newly diagnosed pediatric oncology patients. Journal of Clinical Oncology, 21, 3220-3225.

This paper is the second research study on the earlier version of the PAT.

Kazak, A. E., Prusak, A., McSherry, M., Simms, S., Beele, D., Rourke, M., Alderfer, M.,& Lange, B., (2001). The Psychosocial Assessment Tool (PAT): Pilot data on a brief screening instrument for identifying high risk families in pediatric oncology. Families, Systems, & Health, 19(3), 303-315.

Describes the original PAT assessment tool, along with the original study assessing families of children newly diagnosed with cancer.

Kazak, A., Rourke, M., Alderfer, M., Pai, A., Reilly, A. & Meadows, A. (2007). Evidence-based assessment, intervention and psychosocial care in pediatric oncology: A blueprint for comprehensive services across treatment. Journal of Pediatric Psychology, 32, 1099-1110.

Presents a framework for evidence-based psychosocial practice in pediatric oncology, using PAT2.0 to assess risk and formulate treatment approaches.

Pai, A. L. H., Patino-Fernandez, A. M., McSherry, M., Beele, D., Alderfer, M. A., Reilly, A. T., Hwang, W. T., & Kazak, A. E. (2008). The Psychosocial Assessment Tool (PAT2.0): Psychometric properties of a screener for psychosocial distress in families of children newly diagnosed with cancer. Journal of Pediatric Psychology, 33, 50-62.

Reports on the psychometric properties of the revised PAT2.0.

Patino-Fernandez, A. M., Pai, A., Alderfer, M., Jensen-Pace, M., Reilly, A., & Kazak, A. (2006, September). Assessing psychosocial risk: Mother, physician, nurse report. Paper presented at the annual meeting of the Society for Developmental and Behavioral Pediatrics, Philadelphia, PA.

Presents initial data on the agreement among parents, oncologists and nurses on PAT ratings.

Contact Information: Stephanie Schneider, MS ([email protected]) Anne E. Kazak, PhD, ABPP (ka[email protected]) Fax: 215-590-3020

September 17, 2008

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The Psychosocial Assessment Tool (PAT2.0)

PAT2.0 User Information / Agreement

1. Name and address of hospital/agency (please include department/division):

2. Name, title and contact information for person responsible for overseeing the use of PAT2.0 and for providing quarterly and annual data to CHOP (please include phone, fax, email address)

3. How will you use the PAT2.0? 4. Will you use the Spanish version? 5. Patient group

Research study

Yes

No

Clinical application

Maybe

Pediatric Oncology

Other (please describe)

6. Research Use: If you are plan to use PAT2.0 in a research study, please provide a brief summary of the proposed research, and attach a one-two page summary that includes study questions, design, samples, and outcome measures. Please include information about how the research is funded. The description of the participants should include estimates of gender and ethnicity.

7. Clinical Use: If you plan to use PAT2.0 clinically, please provide a brief description your setting, patient population, and implementation plan and timetable. The description of the patient population should include estimates of gender and ethnicity.

8. What is your proposed timeline for beginning to use the PAT2.0?

_____________________________________________________________________________________ Name (Print and signature) Date

Complete and return to Stephanie Schneider, MS, Center for Pediatric Traumatic Stress: email: [email protected]; fax: 215-590-3020

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OFFICE U SE: PARTICIPANT ID # ________________ DATE FORM C OLLECTED _____/_____/ _

PSYCHOSOCIAL ASSESSMENT TOOL©

ABOUT YOUR CHILD (THE PATIENT):

First MI Day Last Yr

Patient's Name: Date of Birth:

Month

Today's Date: Date of Diagnosis:

Month

Day

Yr

Patient's Gender:

Month White

Male

Female

Day Yr

Diagnosis: Patient's Ethnicity (CHECK ALL THAT APPLY):

Hispanic

Asian

Black/African Amer. Mother Father

Other (specify):

ABOUT YOURSELF:

Family Member Completing Form:

Other (please specify):

Ethnicity ( CHECK ALL THAT APPLY): Hispanic Asian Black/African Amer. White Other (specify): Highest Education Less than high school Some college/ vocational school Some professional/grad school Graduated High Sch/GED Graduated college/vocat school Graduate of professional/grad school Completed: Do you consider yourself part of a faith-based or spiritual community? No Yes

1. PLEASE TELL US WHO LIVES IN YOUR HOME: (PLEASE INCLUDE THE PATIENT AND YOURSELF)

Relationship to Pt. First and Last Name Age Relationship to Pt. First and Last Name Age

1 2 3

Patient Person completing form

4 5 6

2. IS ANYONE IN THE HOUSEHOLD PREGNANT OR PLANNING TO ADOPT? 3. PATIENT' S PARENTS'/GUARDIANS' RELATIONSHIP STATUS: (PLEASE CHECK ONE)

Single Married/Partnered Separated/Divorced

No

Yes

Other (describe):

4. WHO CAN YOU COUNT ON TO PROVIDE THE FOLLOWING: (PLEASE CHECK ALL THAT APPLY)

Spouse/ Partner Patient's Grandparents Extended family Friends Work Associates Other (describe) No One

a. Childcare/Parenting b. Emotional Support c. Financial Support d. Information e. Help with everyday tasks

(ex: meals, errands, transportation)

5. HOW WILL YOU GET TO YOUR APPOINTMENTS?

( PLEASE CHECK ALL THAT APPLY) Own Car Public Transportation Rides from Others Not Sure /Don't Know No

6. PATIENT' S CURRENT HEALTH COVERAGE:

(PLEASE CHECK ALL THAT APPLY) None Medicaid Low co st/l im ite d COBRA cover a ge Insurance (private/through employer) Have many financial problems Hard to meet our basic needs

7.

IS YOUR FAMILY EXPERIENCING CURRENT FINANCIAL DIFFICULTIES? (CHECK ONE)

Have some financial problems

8. IN WHAT AREAS ARE YOU CURRENTLY EXPERIENCING FINANCIAL DIFFICULTIES? (CHECK ALL THAT APPLY)

None Phone/Utility bills Rent/Mortgage Buying food Yes Vehicle (upkeep/gas/insurance) No, too young Medical Exp

9. DOES YOUR CHILD KNOW S/HE HAS CANCER?

No, opted to not tell him/her

10. TELL US ABOUT YOUR CHILD' S CURRENT SCHOOLING: (CHECK ALL THAT APPLY)

Head Start Preschool/Pre-K K­12; Grade? ______ Homebound Gifted Special Education Not attending school by parent's choice

Too young for school (Skip to #11) College/Vocational Home schooling Dropped out Completed Formal Education Not currently receiving school or homebound services

OFFICE USE: PARTICIPANT ID # ___________ DATE COLLECTED: ______/______/ _____

11. IN GENERAL, DOES YOUR CHILD (THE PATIENT): (PLEASE CHECK ONE BOX FOR EACH QUESTION)

Neven a Concern Sometimes a Concern Currently Receiving Help

12. CONCERN FOR A SIBLING? N/A

No Yes

a. Change moods quickly? b. Act younger than his/her age? c. Get upset about going to the doctor/dentist? d. Act overly active? (i.e. hyperactivity) e. Have attention difficulties/ADHD? f. Cry easily or become upset easily? g. Seem easily distracted? h. Worry? i. Have learning or school difficulties? j. Appear sad or withdrawn? k. Use drugs, alcohol or other substances? l. Have developmental concerns or delays? m. Act shy or cling to you/other familiar adults? n. Have difficulty making and keeping friends? o. Have a pre-existing medical condition? (Describe) p. Been a victim of violence? q. Another psychological concern? (Describe)

13. THINKING ABOUT THE ADULTS (CAREGIVERS) IN THE PATIENT' S HOME : PLEASE CHECK ONE BOX

FOR EACH QUESTION:

No

Yes

a. Has anyone experienced periods of excessive worry, fear and/or anxiety? b. Has substance use ever caused problems for anyone in the family? c. Has anyone experienced periods of prolonged sadness or depression? d. Does anyone have difficulty focusing, concentrating and/or have a history of an attention deficit disorder? e. Have there been marital difficulties, conflict or discussion of separation? f. Has anyone been (or currently is) incarcerated/in jail? g. Has anyone ever been told that s/he drinks too much? h. Have there been any difficulties with child custody disputes? i. j. k. l. Does anyone have a serious or chronic medical illness/condition? (Describe) Does anyone have a psychological condition not described above? (Describe) Have you experienced the death of a family member within the past year? Other family stressors? (Describe)

Not at All Sometimes Often Very Much

14. SINCE DIAGNOSIS . . . (PLEASE CIRCLE ONE FOR EACH ITEM BELOW)

a. Have you had bad dreams/ nightmares about your child being ill? b. Have you become jumpy since your child came to the hospital? c. When you are reminded of your child being ill, do you sweat or tremble, or does your heart beat fast?

0 0 0

1 1 1

2 2 2

3 3 3

15. HOW MUCH DO YOU BELIEVE. . . . (PLEASE CHECK ONE BOX FOR EACH ITEM BELOW)

Not at all true a. The doctors will know what to do b. My child will be in a lot of pain c. Our family will be closer because of this d. Our marriage or family will fall apart e. This is a disaster f. We can make good treatment decisions g. People will pull away from us h. We're going to beat this i. Cancer is a death sentence j. Everything happens for a reason Just a little bit true Pretty much true Very true

Thank you for taking the time to complete this form.

Adapted with permission from a copyrighted scale from the Division of Oncology, The Children's Hospital of Philadelphia.

REV: 12/29/04

© 2004 Division of Oncology

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