Survivorship: Empowering Wellness after Treatment Adrienne Vazquez Guerra, MSN, ACNP-BC, AOCNP Director Clinical Programs. Survivorship Nurse Practitioner University of Miami Sylvester Comprehensive Cancer Center Miami, FL
Learning Objectives 1. Identify the various types Survivorship: of survivorship models based on practice/ institution needs Empowering Wellness after Treatment 2. Review common challenges and help identify patients' "new normal" 3. Review integration of guideline based survivorship care based on individual Adrienne Vazquez Guerra, practices MSN, ACNP-BC, AOCNP Director Clinical Programs. 4. Discuss Survivorship examples of a survivorship program Nurse Practitioner University of Miami Sylvester Comprehensive Cancer Center Miami, FL
American Cancer Society (2018) Cancer Facts & Figures Expanding Field of Survivorship
Who is a Survivor? A cancer survivor is anyone who has been diagnosed with cancer from the time of diagnosis and for the balance of his or her life. An individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life. Family members, friends, and caregivers are also impacted by the survivorship experience and are therefore included in this definition. National Cancer Institute & NCCN: National Coalition for Cancer Survivorship
A survivor is anyone diagnosed with cancer and www.cancer.org Living cancer-free for the remainder of life Living cancer-free for many years but experiencing one or more serious, late complications of treatment Living cancer-free for many years, but dying after a late recurrence Living cancer-free after the first cancer is treated, but developing a second cancer Living with intermittent periods of active disease requiring treatment Living with cancer continuously without a disease-free period
Why do Survivorship? IOM report showed: 1. Survivorship care is a neglected phase of cancer care 2. Cancer recurrences, new primary cancer and treatment late effects are concerns of cancer patients 3. Few guidelines are available for follow up care of the cancer survivor 4. Providers lack education and training
Estimated/Projected US Cancer Survivors 1975 to 2040 The number of cancer survivors is projected to grow to 26.1 million by 2040, an increase of almost 11 million from 2016.
Statistics by Age, Site and Gender American Cancer Society, 2016
Survivorship: Empowering Wellness after Treatment Tyles of Survivorship Models Adrienne Vazquez Guerra, MSN, ACNP-BC, AOCNP Director Clinical Programs. Survivorship Nurse Practitioner University of Miami Sylvester Comprehensive Cancer Center Miami, FL
Multidisciplinary Cancer Survivorship Care Cardiology Oncology Surgery Endocrine /Bone Health Radiation Oncology Genetics Cancer Survivorship Primary Care Cancer Rehab/OT/PT/ Palliative Care Jennifer Klemp New Orleans Cancer Meeting Sexual Health/GYN/ Urology/ Fertility Preservation Support Services/ Lifestyle Specialists
Good for high risk patients Models of Survivorship Care Oncology Specialist Care Relationship with oncologist Focus remains on illness, not wellness. Primary care needs are unmet Multidisciplinary Survivorship Clinic Extensive team and resources (pediatric, AYA) Disease /Treatment Specific Survivor Clinic Oncology setting Consultative Survivorship Clinic One time visit, no follow up required Integrated Survivorship Clinic Part of survivorship team, communicate with all providers ASCO Survivorship Compendium 11/2017
Caution! Need experienced provider Models of Survivorship Care General Survivorship Clinic Care for all, financially efficient Consultative Survivorship Clinic One time visit, no follow up required Integrated Survivorship Clinic Part of survivorship team, communicate with all providers Community Generalist Model Care done by primary care provider, focus on wellness With or without transition Limited provider knowledge Shared Care of Survivor Shared care between PCP and oncologist ASCO Survivorship Compendium 11/2017
Survivorship: Empowering Wellness after Treatment Common challenges and help patients' "new normal" Adrienne Vazquez Guerra, MSN, ACNP-BC, AOCNP Director Clinical Programs. Survivorship Nurse Practitioner University of Miami Sylvester Comprehensive Cancer Center Miami, FL
New Normal or New alternate reality The end of cancer treatment is often a time to rejoice. Most likely you're relieved to be finished with the demands of treatment. You may be ready to put the experience behind you and have life return to the way it used to be. Yet at the same time, you may feel sad and worried. It can take time to recover. And it's very common to be thinking about whether the cancer will come back and what happens now. Often this time is called adjusting to a "new normal." You will have many different feelings during this time. Long-Term Survivorship Care after Cancer Treatment; April 2018
Common Challenges It is as if we had invented sophisticated techniques to save people from drowning, but once they had been pulled from the water, we leave them on the dock to cough and splutter on their own in the believe that we have done all that we can. Dr. Fitzhugh Mullan ASCO Survivorship Compendium 11/2017
Case Study 57 year old Hispanic female Married for 19 years 2 children (12 & 18 years old) Menopausal x 2 years Police officer No family history of cancer
ASCO Survivorship Compendium 7/2017 Case Study Timeline May 2016: Incidental finding in shower right breast palpated a lump June 2017: lumpectomy & SLN biopsy #1/3 LN positive Genetic counseling: negative for BRCA 1 & 2 mutations Oncotype testing: Result 9 May 2016: saw PCP, mammogram ordered which showed a 2cm nodule Complete work up MRI & Labs June 2016: ultrasound guided biopsy DX: invasive ductal carcinoma of right breast ER/PR + HER2 - First contact with nurse navigator who arranges consults with surgical oncology and medical oncology at breast center radiation oncology Treated for 5 weeks with IMRT to right breast Late August 2017: seen in f/u and RX anastrozole
Ending in Survivorship Visit November 2017: seen in survivorship clinic Given the NCCN distress thermometer Oncology Nursing Forum Vol 44, NO. 2, May 2017
Her Story Sexual dysfunction I don t know why, but I feel like a crazy person. I will be standing in front of a fan, in the middle of a restaurant, just to cool off. I have the same sensation at night sometimes too. I have gained weight and feel ugly. My husband thinks I m better but I'm not. The LAST thing I feel like doing is being sexually intimate with him. I feel ugly and when we do have sex it s painful! I really don t want to and I just don t have the desire.
Fatigue Bone Loss Brain Changes Endocrine System Changes Hearing Loss Heart Problems Musculoskeletal Changes Lung Problems Sexual changes/decreased libido Physical Changes Lymphedema Mouth Changes Infertility Neurologic Changes Kidney & Liver Issues Scars Chronic Pain Second Primary Cancer
Psychosocial Depression Anxiety Fear of Recurrence Body Image disturbances Family Issues (changes in interpersonal relationships) Unrealistic expectations Finances (health or life insurance, job loss) New Normal (return to work/school) Depression, anxiety (fear of recurrence), uncertainty, isolation, altered body image Existential/spiritual issues Sense of purpose or meaning, appreciation of life
Sexual Dysfunction
Concerns Physiologic & emotional Fear of intimacy Decreased libido Vaginal dryness Vaginismus Reduced/shortened vaginal size Pain with intercourse Body self-image Interpersonal relationships Sexual Dysfunction Barriers Providers don't address the issue(s) Providers don't have the training Embarrassment Time constraints Resources not identified Focus on other symptoms/issues Don't ask for help/burden provider Assume provider will address if important Barsky, J 2017 Journal Cancer Survivorship
Research - 1999 ASCO Survey 2016 Says - Presentation Patients Expect Little Physician Help on Sex; June 1999 Effects of risk-reducing surgery on libido, self-image, and psychological status among BRCA mutation carriers survey of 500 adults BRCA mutation carriers often have risk-reducing surgery (mastectomy, bilateral salpingo-oophorectomy; BSO, hysterectomy) for prevention and treatment of breast and Results ovarian show: cancer. most valued their sexual health BRCA Results positive show: patients could having not rely risk-reducing on their doctors surgery, to 72% provide reported them a problem with with sexuality and libido and 79% considered low libido to be a major concern information about their sexual problems Causes for sexual inactivity included poor body image (48%), vaginal dryness (46%), reduced desire (63%), and a change in relationships (17%). About 85% said they might bring these problems up with their doctor but 70% believed their doctor would dismiss their concerns. Individuals who were sexually inactive, as compared to those who were active, had significantly (p<0.05) greater anxiety and lower (p<0.0001) emotional and physical quality of life inactivity. Two-thirds said they believed such a discussion would embarrass their doctor.
Research 2014 ASCO 2014 Presentation There s No Little Blue Pill for This: Sexuality after Gynecologic Cancer 23% discussed the issue with a care provider while 60% desired a physician initiated conversation 23% discussed the issue with a care provider while 60% desired a physician initiated conversation fatigue, hot flashes, scars, dyspareunia and breast changes Conclusion: Patients do not feel this issue is addressed during routine care. Majority of patients want this issue discussed with their physicians.
Research - 2016 ASCO 2016 - Presentation Effects of risk-reducing surgery on libido, self-image, and psychological status among BRCA mutation carriers BRCA mutation carriers often have risk-reducing surgery (mastectomy, bilateral salpingo-oophorectomy; BSO, hysterectomy) for prevention and treatment of breast and ovarian cancer. BRCA positive patients having risk-reducing surgery, 72% reported a problem with sexuality and libido and 79% considered low libido to be a major concern Causes for sexual inactivity included poor body image (48%), vaginal dryness (46%), reduced desire (63%), and a change in relationships (17%). Individuals who were sexually inactive, as compared to those who were active, had significantly (p<0.05) greater anxiety and lower (p<0.0001) emotional and physical quality of life inactivity.
Research - 2018 Cancer Epidemiology, Biomarkers & Prevention; July 2018 ASCO 2016 - Presentation Effects of risk-reducing surgery on libido, self-image, and psychological status among BRCA mutation carriers female breast cancer survivors BRCA mutation carriers often have risk-reducing surgery (mastectomy, bilateral salpingo-oophorectomy; Sexual dysfunction was BSO, defined hysterectomy) as ever for [having] prevention significant and treatment problems of breast with and ovarian cancer. Differences in sexual dysfunction between lesbian, bisexual, and heterosexual change in sexual interest. Over a third of women reported sexual dysfunction (34%); 78% of them attributed these changes in sexual interest to their breast cancer treatment. BRCA positive patients having risk-reducing surgery, 72% reported a problem with sexuality and libido and 79% considered low libido to be a major concern Bisexual women were 77% more likely to report changes in sexual interest Causes compared for sexual to heterosexual inactivity included women poor (OR=1.77; body image 95%CI: (48%), 0.99-3.17, vaginal dryness p<0.10); (46%), reduced desire (63%), and a change in relationships (17%). however, bisexual women were less likely than heterosexual women to talk to their doctor about this. Individuals who were sexually inactive, as compared to those who were active, had significantly (p<0.05) greater anxiety and lower (p<0.0001) emotional and physical quality of life inactivity. Irrespective of sexual orientation, less than 20% of women received treatment for changes in sexual interest.
Disorders of desire Psychoactive medications Antipsychotics Barbiturates Benzodiazepines Lithium SSRIs Tricyclic antidepressants Cardiovascular and antihypertensive medications Lipid-lowering medications Beta blockers Clonidine Digoxin Spironolactone Hormone preparations Danazol GRH-agonists Oral contraceptives Other H2-receptor blockers Indomethacin Ketoconazole Phenytoin sodium Check Medication Lists Survivorship: Empowering Wellness after Treatment Orgasmic disorders Amphetamines and related anorexic drugs Antipsychotics Antipsychotics Benzodiazepines Methyldopa Narcotics SSRIs Adrienne Trazodone Vazquez Guerra, MSN, ACNP-BC, AOCNP Director Tricyclic Clinical antidepressants Programs. Survivorship Nurse Disorders Practitioner of arousal Anticholinergic agents University of Miami Sylvester Comprehensive Cancer Center Antihistamines Miami, FL Antihypertensives Antipsychotics Benzodiazepines Methyldopa Narcotics SSRIs Trazodone Tricyclic antidepressants
Case Study Common Challenges Pharmacology Sexual Changes/decreased libido Couples therapy, cognitive-behavioral therapy (psychologist, psychiatrist, sex therapist, urologist, gynecologist) Lifestyle modifications (light exercise, exercise physiologist) Guided imagery Dilators Water based lubricants Local estrogens Herschbach et al., Support Care Cancer. 2010 Apr;18(4):471-9
Examples of Programs
Guidelines Commission on Cancer ASCO NCCN LIVESTRONG Cancer programs must develop and implement processes to monitor the formation and dissemination of a SCP for analytic cases with Stage I, II, or III cancers that are treated with curative intent for initial cancer occurrence and who have completed active therapy. Patients should transition from this initial phase into survivorship-focused care, concentrating on risk-based screening and health promotion. Define what is included in standards for care of cancer survivors. Offers a six-week, evidence-based educational program to support and empower survivors as they transition from active treatment to posttreatment The survivorship care plan is given and discussed with the patient upon completion of active, curative treatment and recorded in the patient medical record. Determining when, where and which patients are followed will vary depending on individual patient need and the model of care delivery. Offer guidelines that are focused on survivors after the completion of cancer treatment and in clinical remission. This includes screening for second primary cancers and routine follow up schedule. Mainly targeted to individuals who have completed their treatment within the last 24 months, the program may benefit survivors at any time in their survivorship. The timing of delivery of the SCP is within one year of the diagnosis of cancer and no later than six months after completion of adjuvant therapy (other than long-term hormonal therapy). Offer risk and symptom specific guidelines and algorithms. The program helps participants learn the benefits of exercise, nutrition, emotional support, and medical management, and is offered in faceto-face meetings.
Different Programs Sylvester - UHealth Florida Cancer Specialists University of Kansas Cancer Center Miami Cancer Institute Oncology Specialist Care (Breast & Head and Neck clinics) Consultative Clinic Oncology Specialist Care Disease /Treatment Specific Survivor Clinic Consultative Clinic (all other specialties) Integrated Care Consultative Clinic Integrative clinic
COC Standard 3.3 Survivorship Care Plan Develop a plan to give and discuss a survivorship care plan within one year of diagnosis & within 6-months upon completion of active, curative treatment (extended to 18 months if receiving hormonal therapy) https://www.facs.org/quality-programs/cancer/news/survivorship
NCCN Guidelines for Survivorship Provide screening, evaluation, and treatment recommendations for common consequences of cancer treatment and include: Anxiety, depression and distress Chemo-related cardiac toxicity Cognitive decline Fatigue Lymphedema Menopause Pain Sexual dysfunction Sleep disorders Preventive health issues (healthy lifestyle behaviors) Additional concerns include: Fear of recurrence Employment Financial Toxicity www.nccn.org NCCN Guidelines Version 3.2017 February 16, 2018
What s Important? Who does what? Understanding of roles and responsibility of care Knowledge transfer Treatment summary and care plan Information on disease, late & long-term effects, follow up Healthy living tips Resources Local, community, national Communication channels Contact information for providers and nurses Active patient involvement Encouraged to contact providers with problems Provide the information given to the primary care providers https://www.facs.org/quality-programs/cancer/news/survivorship
Survivorship Care Plan: Healthcare providers Diagnosis and Stage Treatment (surgery, chemotherapy, radiation) Long term side effects Information on recurrence or new primary DX Follow up schedule What s Relayed? Resources & Healthy Living tips Cancer Center resources and contact information South Florida and National resources ACS and NCCN guidelines for Healthy Living Additional: flyers or informational sheets https://www.facs.org/quality-programs/cancer/news/survivorship
ACS Healthy Living Tips Survivorship: Empowering Wellness after Treatment Adrienne Vazquez Guerra, MSN, ACNP-BC, AOCNP Director Clinical Programs. Survivorship Nurse Practitioner University of Miami Sylvester Comprehensive Cancer Center Miami, FL American Cancer Society, 2018
Questions?
Survivorship: Empowering Wellness after Treatment Adrienne Vazquez Guerra, MSN, ACNP-BC, AOCNP Thank You Director Clinical Programs. Survivorship Nurse Practitioner University of Miami Sylvester Comprehensive Cancer Center Miami, FL
Our Common Purpose At the U, we transform lives through teaching, research and service. "This is exactly what I needed" - Survivorship Clinic patient "So other people feel the guilt that I do? That I survived and did well..." - Survivorship Clinic patient