Psychosocial Needs/ Distress of AYA Oncology Patients

1. Psychosocial Needs/ Distress of AYA Oncology Patients Andrea Johnson, MSW, RSW PhD Student- UBC

2. Why Adolescents? • Significant physical, psychological, emotional, social, vocational growth during AYA years (Abrams, Hazen, & Penson, 2007; Hollis & Morgan, 2001; Woodgate, 2006). • Dichotomy of care (Fernandez, C., Fraser, G., Freeman, C., Grunfeld, E., Gupta, A., Mery, L.S.,…Schacter, B., 2011; Bleyer, W.A. & Barr, R.D, 2007). • The ‘Lost Tribe’ (Fernandez & Barr, 2006). • Can be a complex population to care for

3. Psychosocial Challenges • Independence and autonomy • Peer relationships/dependence on family • Changes in physical appearance • Self-Esteem; Identity • Sexuality and Fertility • Future-planning • Fears and difficult events within cancer (Hedstrom, 2007) • But positive experiences too! (Bellizi et al, 2012; Karian et al, 1995)

4. Identity Development • “You’re no longer that person you used to be. The day you’re told that you have cancer, you’re no longer that person you were a second ago.”

5. Body Image & Self-Esteem • “Before treatment, I was a cool kid in high school. I had friends, everything was good. . . And then coming back, I had this thin hair, I was pale, I was overweight. I was walking with 2 canes and limping and hunched over. I was different.”

6. Interrupted Lives • I find I matured beyond my years but I’m 2 years younger than everyone else in a sense. I can’t drive yet, I don’t have a job, I haven’t graduated school yet. All my friends are working, going to school, driving, they have boyfriends. I mean they’re having sex and I just can’t relate to any of this.”

7. Adolescent Oncology Narratives • “Teens definitely need different care than kids… we’re struggling severely with our identity already, you throw cancer in the mix… and that just messes it up even more.” • “Sometimes we want to cry… we are not showing it.” • “Sometimes doctors and nurses don’t get it… our world is very small…we need friends around us who understand.” • “It’s the smaller picture we care about (how this is affecting my life right now!) as opposed to the bigger picture.” • “Get to know me outside of my cancer.” • “You can’t treat me like a kid but you also can’t treat me like an adult… cancer is a very scary thing to go through.”

8. Distress: • Distress: ‘a multifactorial, unpleasant emotional experience of a psychological (cognitive, behavioral, emotional), social, and/or spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms, and its treatment.’ (NCCN, 2012)

9. Distress- Adolescents with Cancer • Adolescents and young adults with cancer may be at greater risk for distress • Argued that adolescents experience greater distress as compared to children or adults (Kwak et al, 2013b) • Inconsistent significant distress levels of AYA reported in literature- ranging from 6-41% (Kwak et al., 2013). • Adolescent distress is under-reported and under-addressed • Distress is often not recognized by clinicians • Distress can occur at any point along the cancer trajectory

10. Why Screen for Distress?? • Psychosocial screening and intervention can reduce levels of cancer-related distress and improve QOL (Anderson, 2002; Carlson & Bultz, 2004) • Early identification of patients at risk for significant psychosocial distress. • Triaging psychosocial distress is not always accurate. • Theory should be used to guide screening practice- developmental theory provides good rationale • Distress- ‘vital sign’ • Canadian Strategy for Cancer Control (2004) added ‘distress’ as a new vital sign to accompany temperature, respiration, heart rate, blood pressure, and pain

11. Challenges to Screening • Psychosocial screening for adults with cancer- late 80’s (Zabora, 2012) • Screening practices not yet widely adopted for adolescents with cancer (despite extensive use in adult oncology) • Lack of standardized screening measures for adolescent distress • Does the measure actually measure what it is supposed to? How can we best assess AYA distress? • Effectiveness of measures to screen for distress- previous studies focused on distress measures regardless whether measures were accurately identifying AYA distress (Zebrack et al., 2012) • Barriers to implementation

12. Research Findings- Distress • Adults: 20-40% of survivors experienced high levels of distress throughout their illness- 30% at clinically significant levels of distress (Carlson et al, 2004; Gao, Bennett, Stark, Murray, & Higginson, 2010). • AYA: • Within 4 months and 12 months since diagnosis, 28% of AYA oncology patients experienced distress that exceeded population norms; improved at 6 months (Kwak et al., 2013a.). • Levels of distress equally distributed regardless of diagnosis type, severity or survival rate (Kwak et al., 2013a.). • At 6 and 12 months, 39 % and 44%, of patients reported moderate to severe levels of PTSS; 29% had PTSS levels of PTSD (Kwak et al., 2013b.) • Higher rates of PTSS were found in AYAs with higher-survival rates (Kwak et al., 2013b)

13. 12% of AYAs reported clinically significant choronic distress throughout 12 months since diagnosis; 15% reported delayed distress. 41% of patients reported un-met counseling needs- this was significantly related to distress over time (Zebrack, Burg, & Vaitones, 2012) • Adolescents often have un-met psychosocial needs (Kent et al., 2012)

14. Context for Developing Standardized Distress Guidelines… • No standardized screening practice for AYAs • Lack of validated distress screening measures for adolescents with cancer • Adolescents are experiencing distress that is not being screened and resulting in unmet needs • Adolescents are an under-researched population- we simply don’t know much about their unique distress • Recent studies have demonstrated that AYA distress exceeds population norms

15. National AYA Distress Sub-Committee • Sub-committee of the Canadian National Adolescent and Young Adult Cancer Task Force • Developed to address the gaps in the current context of distress screening • National psychosocial clinician committee member representation • Pediatric and adult oncology clinician committee representation • Research Project/Goal: AYA Distress Screening Tool Validation • PIs: Dr. Anne Klassen (McMaster); Dr. Norma D’Agostino (PMH)

16. AYA Distress Screening Tool Validation • To assess the only validated distress screening tools for AYAs with cancer (AUS) • To adapt these screening tools (for on-treatment and off-treatment) for use in Canada with AYAs 15-29 years old; English and French versions • Australian AYA Oncology Distress Screening Tool: • Distress Thermometer (modified for AYA specific areas of distress); separate versions for treatment and survivorship. Pilot-tested in AUS and found to be valid. • Clinical Assessment Questions • Demographics • Funding has been received from C17 for adaptation of this AUS distress screening tool for AYAs 15-29 in Canada

17. Current phase of the project: content validation • Face validity qualitative interviews currently being conducted in English and French (ON & QC) • Next phase of project: field validation. • Once completed and analyzed, large-scale field validation study will be extended to sites across Canada • The field test-data will be analyzed to identify items that represent best indicators of distress based on performance against a standardized set of psychometric criteria.

18. Goal is to have a valid measure of AYA oncology distress. • AYA oncology specific screening tool can enhance both research and clinical practice with cancer. • Will assist in development of a national screening program for adolescents and young adults with cancer.

19. Where to from here? • Distress is being under-screened yet many adolescents are experiencing significant distress • How best to screen for distress?? Goal of this project… • Screening practice at your local adult oncology centre? • BCCA (PSSCAN-R) • Strengths/weaknesses of different screening measures • Ask questions of this population…