Secondary Care Perspective on Living With and Beyond Cancer   Dr Andy Phillips Hawkes Bay DHB

American Society of Clinical Oncology Statement: Achieving High-Quality Cancer Survivorship Care Account for the fact that some survivors may be at increased risk for other chronic diseases, such as diabetes and cardiovascular disease and outline methods to address this risk Assess and address psychosocial needs Include information about fertility planning for patients of reproductive age Include known side effects (persistent and late occurring) of cancer and cancer treatment Include screening guidelines and symptoms of cancer recurrence, including second primaries Discuss and incorporate survivors' values and preferences regarding their care Use discussions about cancer-related concerns as teachable moments to educate survivors about behavioural changes, such as tobacco cessation, healthy weight, and alcohol usage reduction

Key Messages Survivorship is not the right term but the most commonly understood term to conceptualise this area of work. Where possible living with and beyond language will be used. Rehabilitation is an essential part of post active treatment. Survivorship needs to be planned from a medical follow up as well as a supportive care perspective. People affected by cancer moving from intervention into follow-up have a planned approach to their continued medical and supportive care needs which is clearly documented, reviewed regularly and understood by the person and their whānau. The follow-up care plan is communicated to Primary Care and other community-based care providers. All patients are assessed for their rehabilitative needs and referred appropriately by Allied Health, irrespective of the patient’s age. For some people affected by cancer there is benefit in adopting a chronic disease approach to management. People’s needs in survivorship are as unique as they are in treatment Tiered pathways of care are needed. The Equity of Health Care for Māori Framework identifies actions to improve equity at the health system, health organisations and health practitioner levels.

General Principles Surveillance for recurrence of primary cancer Screening for development of a second malignancy Promoting appropriate management to ensure the maximum number of years of healthy life Minimising preventable pain, disability, and psychosocial distress Supporting cancer survivors to access resources and the family, peer, and community support they need Maintain wellness Long term effects of treatment include surgery, radiation and cytotoxic therapy Wellness issues include screening for other unrelated disease and appropriate Immunizations

Relationship Centred Practise Build Relationships Increase Resilience

Preparation The clinician has prepared the CA survivor by sending them information or arranging a patient education programme. The patient education programme eg Stanford provides increased health literacy, self-management skills, The clinician reviews the facts of the case, what might be done and what is known about the CA survivor and takes any steps needed to improve the chance of a good result from the process.

Agenda Setting Once a connection has been made the health professional works with the patient to draw out what the patient knows, understands and wants. Exploring the patient’s perspective is very powerful It helps build a strong relationship and rapport It enables us to gather excellent information It allows us to make efficient use of the time

Agreeing a shared agenda The clinician works with the consumer to achieve a level of trust and shared commitment to act, drawing out what the consumer knows and wants and understands and offering support and information. Consumer is Supported to Ask three questions What are my options ? What are the possible benefits and risks ? How can we make a decision together that is right for me ?

All CA Survivors - Risk Factors Known or suspected cancer mutation, coupled with carcinogenic treatment, increases risk of secondary malignancies Earlier the age of treatment, greater the risk Lifestyle factors can increase risk of metabolic syndrome, cardiovascular disease, smoking-related cancers Race: Maori patients have high cardiac risk Gender: Women have higher risk late adverse effects ALL cancer treatment – functional impairment, physical limitations, anxiety

Medical issues for survivors of common cancers Lung cancer Decreased pulmonary reserve Smoking cessation reduces risk for new cancers Colon cancer Second malignant neoplasms Life-altering issues with weight, continence, bowels Breast cancer Second breast cancers Premature ovarian failure; lymphoedema Cardiac toxicity (from chest radiation and some chemo) Prostate cancer Erectile dysfunction; symptoms from androgen ablation Rx Urinary incontinence; GI symptoms related to proctitis Clinicians now commonly encounter cancer survivors in their daily practice, so familiarity with the late consequences of the more common cancers and their treatment is important. Lung cancer Many lung cancer survivors who have had thoracic surgery or radiation have decreased pulmonary reserve, and yet they continue to smoke. These patients are at increased risk for new lung cancers and other tobacco-induced malignancies. Clinicians should focus on promoting smoking cessation with individual and group counseling, medications including nicotine replacement therapy and varenicline, and Web-based computer programs that may help modify behavior. Colon cancer Colorectal cancer survivors are at risk for second malignant neoplasms, especially new, unrelated colonic adenomas and cancers. Some survivors have ongoing issues with weight loss or gain, continence, diarrhea, or constipation, and these issues can be life-altering. Referral to a gastroenterologist or stoma therapist may be indicated for bowel management. Dietary instruction and referral to a nutritionist and referrals for psychosocial counseling as indicated can also be helpful. Breast cancer Breast cancer survivors confront a variety of challenges, including increased risk for second breast cancers, premature ovarian failure, cardiac toxicity, and lymphedema. For example, premature ovarian failure can result in hot flashes, vaginal dryness, and decreased libido. Estrogen replacement is often contraindicated because of concerns that it may increase risk for disease recurrence, but acupuncture or antidepressants have shown some efficacy in decreasing hot flashes. There are also many over the-counter, nonhormonal lubricants that can be used for vaginal dryness. Premature ovarian failure can also result in bone loss, osteopenia, and osteoporosis, and bone density should be valuated with a DEXA scan. Chest radiation and some chemotherapy agents can cause cardiac problems in breast cancer survivors, and a baseline echocardiogram should be done after treatment is complete. Breast cancer survivors should have routine follow-up and some should have MRI scans, as advised by the oncology team. Prostate cancer Prostate cancer patients who have surgery may experience erectile dysfunction and urinary incontinence. Men treated with radiation therapy may also experience erectile dysfunction and gastrointestinal symptoms related to proctitis. Men treated with androgen ablation therapy may have hot flashes and decreased libido. Sexual function, erectile dysfunction, and hormonal issues for men and women are frequently managed by urologists. Biofeedback can assist with incontinence, and medication for erectile dysfunction often allows these survivors to maintain intimate relations. Referral to counseling regarding sexual dysfunction may be a good option for some, given the emotional effects of dysfunction on both patients and partners.

Fear of Recurrence/Secondary Cancer Empower the patient to help prevent recurrence/secondary cancers Encourage across-the-board wellness Refer early – supportive counseling, CBT, psychotherapy

Psychological and emotional problems Oncologists often prescribe medications for sleep problems, anxiety, and depression during treatment Many patients remain on them after treatment Evaluate and manage Refer to appropriate mental health practitioners Concerns about cancer recurrence may be high Suicidal ideation may be increased Chronic health conditions are associated with psychological issues. Oncology care providers often prescribe medications for sleep problems, anxiety, and depression while a patient is in treatment. Many patients remain on these medications after treatment is completed. It is unknown whether symptoms related to emotional and psychological problems predate a cancer diagnosis or differ in patients with and without cancer (23). Therefore, a cancer survivor should be evaluated and managed by appropriate mental health practitioners for emotional or psychological problems just like any other patient, although concerns about cancer recurrence may be high, and in some populations, risk for suicidal ideation associated with certain risk factors is increased, such as depression, hopelessness, uncontrolled pain, and difficulties with interpersonal relationships (24).

Gathering further information Further information may be required to help the clinician and consumer understand the situation and options.

Discussing options The clinician supports the consumer to consider relevant alternative approaches, tailoring the explanation as appropriate and responding fully to points that arise, so that any decision will reflect a fair assessment of the benefits and drawbacks of options in the light of the consumer’s own situation Use of Option Grids Use of Decision Support Tools

Exercise and Rehabilitation Maintains healthy body composition and image Improves quality of life, and aids in managing fatigue, mood disorders, and sleep problems The goal is a return to normal activities Low- to moderate-intensity activity doesn’t usually require formal evaluation In 2009, the American College of Sports Medicine convened a group of experts to evaluate the evidence and subsequently issued guidelines on exercise for cancer survivors. It identified the role of exercise in maintaining a healthy body composition and body image (25) and concluded that exercise aids in managing fatigue, mood disorders, and sleep problems and improves quality of life (25). Exercise is safe for most survivors. Participation in low- to moderate-intensity activity, such as walking, flexibility exercise, and resistance training, does not require a formal evaluation in many patients. However, survivors should follow the guidelines for exercise testing before participating in more vigorous exercise. Survivors should avoid being sedentary and recognize that any level of physical activity may be beneficial. The emphasis for cancer survivors is on returning to normal daily activities, and the guidelines emphasize the importance of individualized exercise programs being developed by trained professionals (25).

Role of Complementary and Alternative Medicine Can help survivors take active role in improving health The emphasis on QOL improves mental outlook Acupuncture, meditation, yoga, dance therapy, art therapy Relieve fatigue, pain, and sleep problems Help manage fear of recurrence and reduced QOL from long-term treatment Cancer survivors often use complementary and alternative medicine, in part because these approaches emphasize quality of life related to a more positive mental outlook and help them take an active role in improving their health (26). Acupuncture, meditation, yoga, and art therapy have been shown to increase a survivor’s perception of control over their health; improve menopausal symptoms; and relieve fatigue, pain, and sleep problems. Also, dance therapy, movement therapy, and mindfulness offer promising approaches for the management of fear about recurrence, lower physical functioning, and the reduction in quality of life from long-term treatment (27).

Agreeing the way forward The clinician supports the consumer to decide what should be done to achieve a realistic and acceptable goal They agree a plan of action that includes whatever treatment and other changes in health behaviour will help the consumer advance confidently towards that goal and manage well his or her health

ASCO’s Cancer Treatment Summary form and ASCO’s Survivorship Care Plan - record information Date of diagnosis and test results Type of cancer, including tissue/cell type, stage, and grade Type(s) of treatment and when, including drug names and doses Related medical findings during treatment, such as side effects Supportive services provided during treatment

ASCO’s Cancer Treatment Summary form and ASCO’s Survivorship Care Plan form record information: Contact information for care team members When and how often should have physical examinations and/or medical tests The risk of cancer coming back and signs to look for Information on possible side effects that may occur in the future Recommendations for healthy behaviours, such as nutritional needs and exercise

Treatment and other changes The clinician does what is necessary to see through what has been agreed, supporting the Consumer at each stage and paying careful heed to how his or her views might develop. The consumer makes the health behaviour changes with support.

Reviewing the outcomes and Follow Up The clinician and consumer assess the actual result against the chosen goal, reasons for any difference and what if any other action is required In addition the clinician should reflect on his or her own practice, possibly through a formal audit, and consider opportunities for improving any part of the process.

Essential components of follow-up care Prevent recurrent and new cancers and other late effects Monitor for cancer spread, recurrence, or 2nd cancers Assess medical and psychosocial late effects Manage consequences of cancer and its treatment Coordinate care so all health needs met Provide routine health promotion Care for cancer survivors should focus on monitoring and managing disease recurrence and on effects that occur as a result of cancer and its treatment. It should also emphasize routine health promotion. Ten recommendations for improving the care delivered to cancer survivors are included in the IOM report (see the Box: Institute of Medicine Recommendations for Survivorship Care). Although the body of knowledge on the long-term and late effects of pediatric cancer treatment is significant, far less is known about issues of adult survivorship. Researchers have recently begun to examine an array of topics in this area, but strong evidence to guide decisions for optimal follow-up care is still lacking. In particular, few resources are available to guide practitioners through the maze of possible treatments, their late effects, surveillance options, and schedules for follow-up care. This deficiency is a major challenge for health care providers and cancer survivors. In this article, we will provide guidance for the care of adult cancer survivors based on available evidence as well as from our clinical practice and experience caring for cancer survivors. This guidance is meant for all providers of care to these persons. BOX: Essential Components of Survivorship Care • Prevention of recurrent and new cancers and other late effects • Surveillance for cancer spread, recurrence, or second cancers; assessment of medical and psychosocial late effects • Intervention for consequences of cancer and its treatment • Coordination between specialists and primary care providers to ensure that all health needs are met

Type and location of cancer and type of surgery Information sharing with CA survivor and between secondary and primary care Treatment summary Type and location of cancer and type of surgery Drug names and cumulative doses of chemotherapy Types and cumulative doses of radiation therapy Survivorship care plan Describes follow-up scans, lab tests, clinic visits Identifies potential late effects + surveillance specifics Contains other, individualized information

Reflective Learning And Service Improvement Service Improvement and Action Research using small size PDSA cycles, introducing novel aspects of service provision are key to success and sustainability. This creates knowledge to inform and change practise for both teams and individuals within their local service context. The aim of this is to continuously refresh clinical practise with current evidence to provide improved clinical and patient-centred outcomes. It will be important for clinicians and multidisciplinary teams to disseminate their learning through presentations, discussions of professional groups and formal articles.