How Young Adults Cope with Lymphoma
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Karen Fasciano, PSY.D., director of the Young Adult Program at Dana-Farber Cancer Institute, discusses the facts around young adults who are diagnosed with lymphoma, how the disease affects their life, and the resources available to young adults who are facing cancer. This presentation was originally given at the Lymphoma Research Foundation's 2013 North American Forum on Sept. 28, 2013. http://www.dana-farber.org | http://www.lymphoma.org
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How Young Adults Cope with Lymphoma
- 1. YOUNG ADULTS: COPING WITH LYMPHOMA Karen Fasciano, Psy.D. Director of the Young Adult Program Dana-Farber Cancer Institute kfasciano@partners.org 18th Annual North American Educational Forum on Lymphoma Lymphoma Research Foundation September 27-29, 2013 Brooklyn, NY
- 2. Objectives Facts Life stage Life disruptions Distress and support needs Coping tools
- 3. YAs Diagnosed with Lymphoma Lymphoma in YAs (average per year 1999-2009) Age 15-19 20-24 25-29 30-34 35-39 Total per year Number 1023 1339 1502 1754 2220 7839 United States Cancer Statistics: 1999 - 2009 Incidence, WONDER Online Database. United States Department of" "Health and Human Services, Centers for Disease Control and Prevention and National Cancer Institute; 2011. Accessed at" "http://wonder.cdc.gov/cancer-v2009.html on Sep 23, 2013 11:50:32 AM"
- 4. YA Survival Gap Delayed diagnosis Poor understanding of the biology and etiology Inadequate access to clinical trials and low rates of participation Inadequate treatment practices and settings Unique psychosocial and supportive care Bleyer A, O’Leary M, Barr R, Ries LAG (eds): Cancer Epidemiology in Older Adolescents and Young Adults 15 to 29 Years of Age, Including SEER needs. Incidence and Survival: 1975-2000. National Cancer Institute, NIH Pub. No. 06-5767. Bethesda, MD 2006.
- 5. Improvements in Lymphoma Not all young adult cancers have had insignificant increases in 5 year survival from 1975-1997 Over the past 10 years, Hodgkin’s (.35%) and Non- Hodgkin’s lymphoma (3.35%) in 15-39 year olds have had improvements in 5 year survival rates. (Bleyer, 2011 JAYA Oncology)
- 6. Young Adult Development Cognitive Emotional Social Early young adult (18mid 20) Critical thinking and decision making Future consequences Empathy Language for emotion Mutual relationships Appreciate differences Modulation of risky behaviors Mentors sought Financial responsibility Spiritual questioning Later young adult (mid 20 +) Advanced complex thinking, decision making Brain development ends Self evaluation Leadership capacity Commitment to work, relationships, family Evaluation of external expectations
- 7. Contradicting Demands Demands of Illness Intimacy Invulnerability Independence Control Isolation Vulnerability Dependence Uncertainty Demands of Life Cycle
- 9. Emotional Distress More emotional distress than other ages Fatigue 5-13% higher than general population Distress declines over time but greatest at initial diagnosis and 12 months Half of YAs indicated unmet need for mental health counseling Unmet need for mental health counseling associated with worse quality of life Moderate “ Post traumatic Stress Symptoms” in 44% Bellizzi et al, Cancer 2012 ; Kwak 2013 JCO , Zebrack 2012 Cancer; AYA Hope Study, Smith et al 2013; Daniels et al 2013 Ann Hemato Kwak 2013 Psych-onc
- 10. Role of the Family Family support and cohesiveness important to adjustment Higher family functioning associated with less distress Different family member perspectives contribute to distress in family Tension between independence and dependence within the family Levin et al (2000); Hill et al (1998); Grinyer (2009)
- 11. Impact of Cancer on YAs Psychosocial impact Positive • Relationships • Future goals/plans • Health competence Bellizzi et al, Cancer 2012 • • • • • • Negative Financial Body image Control over life Work plans Relationship with partner Plans for having children
- 12. Tools for YAs Coping with Cancer We need unique tools and interventions for the young adult population.
- 13. Peer Support Support group services is a common unmet need* Interaction takes many forms With advanced disease can also feel isolated from “healthy” cancer peers *AYA Hope Study, Smith et al 2013
- 14. Coping Skills: Managing Anxiety for YAs with Cancer Session 1: Introduction CBT model of anxiety; Intervention description Session 2: Self-Identity/Values Define self-identity/values; Application of personal values Session 3: Coping Define coping; Identify personal coping style; Develop coping plan Session 4: Communication Describe communication styles; Teach assertive communication Session 5: Behavioral Strategies Deep breathing; Relaxation; Mindfulness; Activity planning and pacing Session 6: Identifying thoughts Define three types of thoughts; Review cognitive errors Session 7: Examination Describe automatic thoughts; Examine thoughts; Cognitive restructuring Session 8: Problem-Solving Identifying problems; Problem-solving steps Session 9: Acceptance Understand acceptance; Acceptance strategies Session 10: Review Review; Relapse prevention
- 15. Advanced Care Planning: Voicing My Choices Adaptation of 5 wishes 20 AYAs with cancer or HIV(15-28) provided input Revised document 92 AYAs gave input on revised document Content My Signature My Comfort My Support My Medical Care Decisions My Medical Treatment My Family/Friends To Know My Spiritual Thoughts My Remembrance My Belongings My Voice (Letters) Glossary Wiener et al 2008 Journal of Palliative Medicine; Wiener et al Pediatrics 2012, http://www.agingwithdignity.org/voicing-my
- 18. YA Organizations
Notes de l'éditeur
- Although the presentation is on YA cancer- much of the literature has focused on the AYA gap.Surveillance, Epidemiology and End Results database
- Brain development continues to mid twentiesLeadership capacity- shaping the rules
- 22 large studies that in- vestigated prevalence of fatigue or fatigue levels in HL survivors, showed prevalence rates of 11–76 % in HL sur- vivors, compared to 10 % in the general population. We also found 5–13 %, higher levels of fatigue in HL survivors when compared to the general population; differences that were mostly clinically relevant. There was some evidence that older age at diagnosis might lead to higher fatigue levels.
- Face medical challenge and social and developmental transition
- Post-traumatic stress symptoms include re-experiencing of the traumatic event, such as intrusive memories and nightmares; avoidance of thoughts, feelings, and reminders related to the trauma and emotional numbing; and persistent arousal, such as hyper-vigilance and insomnia The results showed that 44% of AYA patients reported at least moderate levels of PTSS approximately 1 year following their cancer diagnoses
- First two in childhood cancer survivors,sthird in AYA
- METHODS: This was a population-based, multicenter study of 523 newly diagnosed AYA survivors (ages 15-39 years) of germ cell cancer (n = 204), non-Hodgkin lymphoma (n = 131), Hodgkin lymphoma (n = 142), acute lymphocytic leukemia (n = 21), or sarcoma (n = 25) from 7 National Cancer Institute Surveillance, Epidemiology, and End Results (SEER) registries. Age at diagnosis was categorized into 3 groups (ages 15-20 years, 21-29 years, and 30-39 years).RESULTS: Respondents (43% response rate), on average (±standard deviation), were aged 29 = 6.7 years, and most patients (80.1%) were not receiving treatment at the time the completed the survey. With modest differences between the age groups, the most prevalent areas of life impacted in a negative way were financial, body image, control over life, work plans, relationship with spouse/significant other, and plans for having children. Endorsement of positive life impact items also was evident across the 3 age groups, particularly with regard to relationships, future plans/goals, and health competence.CONCLUSIONS: The current results indicated that there will be future need for interventions targeting financial assistance, body image issues, relationships, and helping AYAs to attain their education objectives.Lymphomapatienta bout 20% of this cohort, not difference in disease
- Us what we know and what we don’t know (AYA)Not legal but 5 wishes isThe wishes Document in Uk (family and medical team (Mw wishes younger, 5 wishes older.20 AYAs in focus group to determine document, would they find it helpful, answered 3 Q’s to participate in study (readiness questions)Asked to critically evaluate 5 wishes, most helpful least, what to add what to take outLots of thinks missing in 5 wishes (wiener 2008 )Jpm What was missing was developmental considerations (identity intimacy independence)Developed a new documentBorn or developed HIV at young ageNow reviewed VMC and 5 wishesQualitative data was most richWiener Pediatrics 2012Wish was not a good wordAll Chochivovs categories were important92 AYAs participated in this.