1. THE LONG-TERM QUALITY OF LIFE OF HEAD AND NECK CANCER PATIENTS Gerry F. Funk, MD Department of Otolaryngology- Head and Neck Surgery University of Iowa College of Medicine Iowa City, Iowa October 11, 2013 FINDING OUR WAY TO SURVIVORSHIP MANAGEMENT

2. CAN WE SIGNIFICANTLY IMPROVE THE SURVIVAL OF HNC PATIENTS THROUGH POST-TREATMENT SURVIVIRSHIP CARE? Co-morbidities General health maintenance Health behaviors Oropharyngeal functioning Pain HRQOL

3. UNIVERSITY OF IOWA HNC OUTCOMES PROGRAM 1995 Outcomes Assessment Program started –Head and Neck Cancer Specific Function and QOL –Medical Outcomes Study SF-36 –Psychosocial evaluation –Case-mix data: demographics, stage, survival, co-morbidity, tobacco & alcohol use, pain, employment,… Patients –Over 2500 enrolled –Information gathered pre-Rx, 3mo, 6mo, 1yr, yearly. Funding –ACS Seed Grants –ACS Career Development Award, 95-33 –NIH, NCI, Office of Cancer Survivorship, R01 CA106908 –NIH, NCI Office of Cancer Survivorship, ARRA Admin Supplement R01 CA106908-04S1 –Iowa Cancer Consortium

4. THE HNC OUTCOMES PROGRAM 25 Studies published with data from the Outcomes Program -Comparative, Psychosocial, Functional -Smoking behavior -General health outcomes -Depression, Social Support -Alcohol use -Post-treatment employment -Surgery vs Chemoradiation -Long-term outcomes of Chemoradiation, XRT, IMRT -Long-term HRQOL -Relationship of PET (SUV) and XRT dose with HRQOL -Predictors of survival and long-term outcomes -HRQOL profiles -Self-reported general health -Pain -Gastrostomy tube use and dysphagia -2-yr conditional survival -Health Service Utilization and Survivorship -Health care utilization by HNC patients -HNC Survivorship Clinic

5. FIRST-YEAR HRQOL PROFILES ARE ASSOCIATED WITH SURVIVAL HRQOL stratified short and long-term survivors.

6. SELF-REPORTED GENERAL HEALTH Co-morbidity predicted overall survival. Self-reported physical health predicted both overall and disease-specific survival.

7. THE ROLE OF PAIN Post-treatment pain is an independent predictor of recurrence and is significantly associated with decreased disease-specific survival.

8. DYSPHAGIA AND SURVIVAL SPS 7 group (severe dysphagia) had significantly lower overall survival than the other groups. Patients >70 yrs Hypopharyngeal primary Treatment included XRT SPS = 7 RISK FACTORS FOR DEATH ON MVA

9. 2-YEAR CONDITIONAL SURVIVAL Obs Survival DS Survival FactorP value HRP value HR Age 0.011.070.031.07 Stage 0.032.490.0084.84 Tobac use --- 0.0034.22 Pain @ 2yr 0.032.09--- QOL @ 2yr 0.024.62 Variables present at 2 years that are predictive of 5-year survival in 2-year survivors of HNC.

10. HOW ARE WE DOING WITH SURVIVAL OF HNC PATIENTS? SUCCESS AT THE FRONT END OF TREATMENT The 5-yr disease-specific survival for head and neck cancer is ~ 65% Surg Tech Anesth Rad Tech Chemo Molec Targ Rx

11. THE QUESTION Can the survival of HNC patients be improved through focused survivorship care? Co-morbidities General health maintenance Health behaviors Oropharyngeal functioning Pain HRQOL SUCCESS AT THE BACK END OF TREATMENT

12. SURVIVORSHIP Survivorship Initiatives –Office of Cancer Survivorship: Established in 1996 is dedicated to enhancing the length and QOL of cancer survivors (NCI) –IOM, NRC: From Cancer Patient to Cancer Survivor: Lost in Transition –CDC/LAF: National Action Plan for Cancer Survivorship: Advancing Public Health Strategies –NCCS, IOM, LAF, NCI : Implementing Cancer Survivorship Care Planning – Commission on Cancer Standards In 1971 there were 3 M cancer survivors in the US. Currently there are 13.7 M, and in 2022 there will be an estimated 18 M Over half of our patients will become cancer survivors, and we need to engage them as cancer survivors.

13. COMMISSION ON CANCER STANDARDS REGARDING SURVIVORSHIP JANUARY 1, 2015

14. HNC SURVIVORSHIP CLINIC GOALS Facilitate focused attention to identified long-term survivorship issues –Co-morbidities –General health maintenance –Health behaviors –Oropharyngeal functioning –Pain –HRQOL Provide guideline-concordant, high-quality, HNC surveillance. Institute the use of Survivorship Care Plans Evaluate the use of a Survivorship Clinic on patient outcomes (survival, HRQOL, general health benchmarks) Improve resource use of HNC clinicians Arch Otolaryngol Head Neck Surg. 2012;138(2):123-133

15. JUSTIFICATION FOR INSTITUTING A HNC SURVIVORSHIP CLINIC Over half of patients treated for HNC will become long-term survivors. Co-morbid illnesses are not being optimally managed. Unhealthy lifestyles persist after treatment. HNC patients have unmet health care needs. HNC patients seen for follow-up make up 72% of patients seen in HNC clinics. The HNC clinics are poorly resourced to meet the global survivorship needs of these patients. The model selected for the survivorship clinic is financially sound.

16. UNIVERSITY OF IOWA HNC SURVIVORSHIP CLINIC Hybrid - transitional and shared model HNC Survivorship Clinic is co-located with the HNC clinic PA-C directed care HNC survivorship PA spent 1 year –Working in HNC clinics with HNC surgeons, radiation oncologists, medical oncologists – learning about HNC post-treatment care and cancer surveillance –Developing HNC Survivorship Care Plans with the HNC team –Organizing adjuvant care collaborators Speech and swallowing Pain and symptom management Tobacco cessation intervention Social Services EMR Template for Survivorship Care Plan & Survivorship Clinic Visit

17. Support Services available through the Survivorship Clinic

18. HNC SURVIVORSHIP CLINIC ELIGIBILITY Initial visit (SCP, Psychosoc screen) at completion of treatment. Formal HNCSC referral. –HNC Patients >/= 2 year out from last cancer directed therapy. –Referral from the primary Head and Neck Surgeon/Oncologist. –Clinical assessment consistent with low risk of recurrence. –Immediate return to HNC clinic if any concern for recurrence is identified.

19. HNC SURVIVORSHIP CARE PLAN

20. HNC SURVIVORSHIP CLINIC CharacteristicNumberPercent Age <551929.2 55-643046.2 65-741320.0 75+34.6 Gender Male4061.5 Female2538.5 Site Oral cavity2640.0 Oropharynx2741.5 Hypopharynx23.1 Larynx57.7 Other57.7 Stage Early (1-2)1929.2 Advanced (3-4)4467.8 Unstageable/unknown23.0 Treatment Surgery only2030.8 RT only57.7 Surgery + RT1523.1 RT + Chemo2030.8 All 311.5 Unknown**46.2 Table 1:Patient, disease, and treatment characteristics of patients enrolled in the Survivorship Clinic who have filled out the patient satisfaction survey to date (N=65)

21. PATIENT SATISFACTION WITH THE HNC SURVIVORSHIP CLINIC ItemStrongly agree AgreeDisagreeStrongly disagree Overall satisfaction with medical care 8713 -- Competent/complete HNC care 8911 -- Communicate well with P.A. 89.210.8 -- Receive courtesy/respect 92.37.7 -- Would recommend Survivorship Clinic 919 -- All med issues addressed 87.512.5 -- Survey of the first 100 HNC Survivorship Clinic patients to evaluate their perceptions about the care in the Clinic.

22. HNC SURVIVORSHIP PATIENT POPULATION AND OUTCOMES Recurrence Overall and DS survival Tobacco and alcohol use Preventable hospitalizations General health maintenance - benchmarks Age and gender appropriate cancer screening – benchmarks Resource utilization Health-related quality of life EVALUATING UTILITY

23. HNC SURVIVORSHIP CLINIC There are no associated toxicities It is not rocket science May improve resource utilization Begins implementation of Surv Care Plans May improve HRQOL May improve survival Aggressive Survivorship Management as a Focused Intervention

24. THANK YOU