Health-Related Quality of Life (HRQOL)

1. Health-Related Quality of Life (HRQOL)

2. Working Group Brad Zebrack, PhD, MSW, MPH, Co-Chair • University of Michigan School of Social Work Barbara Jones, PhD, MSW • University of Texas School of Social Work Anne Kirchhoff, PhD, MPH • Huntsman Cancer Institute, University of Utah Erin Kent, PhD • NCI Kelly Trevino, PhD • Rowan University Lynne Wagner, PhD, Co-Chair • Northwestern University, Robert H. Lurie Comprehensive Cancer Center Sheila Santacroce, PhD, RN, APRN • UNC School of Nursing and Lineberger Comprehensive Cancer Center Nina Kadan-Lottick, MD, MSPH • Yale University School of Medicine Ashley Wilder Smith, PhD, MPH • NCI Sarah R. Arvey, PhD • LIVESTRONG Foundation

3. Objectives and Strategy • To identify gaps and recommendations via a systematic review of HRQOL literature (since 2000) • Define search terms ‘Adolescent,’ ‘Young adult,’ + (PHYSICAL, PSYCHOLOGICAL, SOCIAL, SPIRITUAL/EXISTENTIAL, MEASUREMENT, METHODOLOGICAL) • Google Scholar, PsychInfo, CINHAL • Define parameters for inclusion • Inclusion (Liberal): aged 15-39 years; younger and older also included; patients, survivors, survivors of childhood cancer • Inclusion (Conservative): diagnosis at age 15-39 years • Exclusion: sample includes subjects aged <12/13 years or >40 years

4. Results of Literature Review Records identified through database search Records/Titles screened (Liberal inclusion) Records excluded: Not HRQOL, not 15-39 years Records excluded: Not AYA Records/Titles screened (Conservative inclusion)

5. HRQOL Content

6. Physical Well-Being • AYAs report: • Poorer physical functioning than healthy peers or siblings (CCSS) • Better physical functioning compared to older survivors • YAs reported greater symptom burden compared to older adults with the same cancer type • Breast: Moderate/severe drowsiness, hair loss, sx interference in relationships • Colorectal: Moderate/severe pain, fatigue, nausea, distress, drowsiness, shortness of breath, rash, and greater interference in general activity, mood, work, relationships and life enjoyment • Diagnosis, type of treatment, age at treatment completion and time since treatment completion not correlated with HRQL

7. Physical Well-Being • AYAs on treatment have greater symptom burden than those post-treatment, though fatigue persists for years • Fatigue and pain negatively affect HRQL • AYAs report higher rate of comorbidities (24%) than non-cancer controls (14%), including cardiovascular disease, hypertension, asthma, and disability

8. Physical Well-Being • AYAs report levels of physical activity comparable to controls, below recommended guidelines • High proportion of AYAs report being overweight (20%) or obese (15%) with higher rate of obesity among AYAs (31%) than controls (27%) • Rates of cigarette use among AYAs estimated at 16% and 26% • One study estimated use higher than non-cancer controls (18%) • One study found higher rate among age-related peers (25%) and lower rate among older cancer survivors (4%)

9. HRQOL Gaps

10. HRQOL Content

11. Psychological Well-Being • AYAs report higher prevalence of psychiatric symptoms (compared to normative data, non-cancer controls, older cancer patients) • 6%-41% distress • Study findings mixed with regard to identifiable risk factors • age, time since diagnosis, education, employment status, relationship status, cancer type/severity, treatment type, symptom burden, needs of daily living, fertility concerns, information needs, insurance status, health system characteristics

12. Psychological Well-Being • Coping strategies employed • Acceptance, problem-solving • Support seeking • Emotional expression (through writing, blogs) • Seeking normalcy • Physical activity • Benefit finding, meaning-making associated with positive outcomes • Evidence of low levels of receipt/use of psychosocial care

13. Psychological Well-Being • Existing interventions: promote achievement of developmental tasks • Identity development, sexuality, peer relationships • Intervention modalities reported • Expressive therapy through arts, music, video-making, writing, physical activity

14. HRQOL Gaps

15. HRQOL Content

16. Social Well-Being • AYAs compare selves to peers • Fertility concerns compromise sense of normalcy • Social networks • Friends help • …but offer few opportunities to ask questions, receive information, process feelings, develop coping strategies

17. Social Well-Being • Stigma and unfair treatment • From peers, employers, government agencies • Challenges in returning to work/school • Low SES contributes to poor HRQOL • AYAs less likely to be married/partnered; more likely to divorce.

18. HRQOL Gaps

19. HRQOL Content

20. Spiritual/Existential Well-Being • Coping with Uncertainty • Expressions of Hope and Gratitude

21. HRQOL Gaps

22. Methodology and Measurement • Lower rates of AYA study participation and retention as compared to older survivors • Recruitment strategies vary in effectiveness (as per response rate) • Clinic-based recruitment, mailings, social media, population-based (SEER) • Online approaches and registries for study recruitment have mixed results re study accrual • Study retention increased with use of peer participants, collateral contacts, and parental awareness of participation

23. Methodology and Measurement • Peer outreach (peer-to-peer recruitment) increased retention in health care • Online technology effective for intervention delivery • Use of social media outlets (e.g., Facebook) for collecting PROs • Evidence of higher response bias in reporting inflated levels of socio-emotional functioning

24. Methodology and Measurement • Few HRQOL-specific measures with reported psychometric data • Minneapolis-Manchester QOL • PedsQOL • Cancer Needs Questionnaire • Few specific content areas covered by use of standardized measures • Fatigue, Pain, Sleep • Depression, Distress, Neurocognitive function

25. Summary HRQOL Content & Gaps

26. Recommendations • Rigorous designs • Comparison groups, disease- and treatment-specific sub-groups • Longitudinal studies w/repeated measures -- Important given relatively rapid psychosocial & cognitive development • Comparative effectiveness evaluations of non-traditional interventions (e.g., videogames, movies, creative arts, social networking) compared to conventional interventions (e.g., psychotherapy, support groups) • Instrumentation • Deeper evaluation of function, performance, coverage of content, validity, reliability • Use of standardized measures and • Biomarkers with established AYA reference ranges or community norms • Health disparities • Identify disparities in symptom burden (physical and psychosocial), and access to supportive care services • By AYA characteristics: race/ethnicity, age sub-group, SES, language

27. Recommendations • Intervention studies • Reduce symptom burden • Promote positive adaptation and coping • Target self-efficacy/self-management (symptoms, surveillance of late effects & 2nd malignancies) • Involve friends, family, peers • Better understanding of role and potential of social networking/social media