Survivorship

Educational Objectives

The goal of this program is to improve care for cancer survivors. After hearing and assimilating this program, the cli­nician will be better able to:

1.   Recognize the benefits of survivorship programs for patients who are long-term cancer survivors.

2.   Cite research on survivorship that has influenced modern cancer treatment.

3.   Identify components of and barriers to effective survivorship care.

4.   Assess colorectal cancer survivors for quality of life issues.

5.   Utilize available resources to assist cancer survivors.

Faculty Disclosure

In adherence to ACCME Standards for Commercial Support, Audio-Digest requires all faculty and members of the plan­ning committee to disclose relevant financial relationships within the past 12 months that might create any personal con­flicts of interest. Any identified conflicts were resolved to ensure that this educational activity promotes quality in health care and not a proprietary business or commercial interest. For this program, the faculty and planning committee reported nothing to disclose.

A Multidisciplinary Focus

Debra L. Friedman, MD, MS, Associate Professor of Pediatrics, Vanderbilt University School of Medicine; E. Bronson Ingram Chair of Pediatric Oncology, Director of the Division of Pediatric Oncology/Hematology, and Leader of the Cancer Control and Prevention Program, Vanderbilt-Ingram Cancer Center, Nashville, TN

Background: 1.5 million patients diagnosed with cancer (CA) each year; 1 million/yr become CA survivors (2 mil­lion by 2020); 5-yr survival rate 66% for adults, 80% for children; CA survivors increased from 3 million in 1971 to 11.7 million in 2007; increased survival due to improved treatment of CA and treatment-related toxicities; »1 million women and 0.5 million men have survived CA ³25 yr (higher number in women due to early success of treatment of breast CA); no single best method for achieving survivorship or for treatment of subsequent malig­nancy or organ dysfunction; “parallel effort” required to prevent future chronic illness in CA survivors

Paradigm for CA care: patient diagnosed; interventions made (include risk-adapted therapy; tumor responsiveness and risk for treatment complications considered); secondary intervention   —required for patients who achieve long-term survival; includes health screening, cancer screening, and risk-reducing interventions; involvement of primary care (PC) needed; survivor health and resilience  —  PC issue; influenced by work shortage in PC and limited time of PC physicians (PCPs) to manage these issues; poor communication between PCP and oncologist affects long-term man­agement

Chronic and late effects of treatment: include physical, psychologic, social, and spiritual issues for patients and their families

Risk-based survivor care: risks considered across CA continuum; host factors include age, sex, and race; risk af­fected by premorbid conditions; therapy targeted to genetics of both tumor and patient; major mutations and gene polymorphisms influence cancer and patient’s response to therapy; certain polymorphisms affect drug-metaboliz­ing enzymes, while others affect DNA repair; example  —  multiple polymorphisms may increase risk for cardiomy­opathy, even in absence of chemotherapy; these patients require increased monitoring for cardiac dysfunction and decrease or avoidance of anthracyclines; other influences on risk and morbidity  —  tumor factors (histology, site, and biology); treatment factors (surgery, chemotherapy, and radiation therapy); aging; lifestyle behaviors (eg, to­bacco, diet, alcohol, exercise)

Expert recommendations: alleviate burdens faced by survivors and their families; develop management plans that follow lead of other fields in medicine (eg, those developed for hypertension and cardiac disease); consider CA chronic illness in which treatment is acute phase; develop research and clinical interventions; integrate survivorship into national public health infrastructure

Importance of survivorship: case example 1  —  13-yr-old successfully treated 10 yr before with anthracyclines for acute myeloid leukemia; physical examination normal; fractional shortening of 13% seen on echocardiography; case example 2  —  patient treated 10 yr before with doxorubicin for acute lymphocytic leukemia; reported loss of consciousness with exertion; congenital prolongation of corrected QT interval (QTc) unknown to oncologists; cur­rent QTc 0.55 on electrocardiography; take-home points  —survivorship programs necessary to address patient’s unmet posttreatment needs; PCP often unaware of unique needs; survivorship clinics best practice among top CA centers; CA requires comprehensive care continuum that enhances patient empowerment

Importance of follow-up: studies  —  only 35% of 10,000 survivors of childhood CA believed disease and therapy might have long-term adverse effects; two-thirds of adult patients from same study had chronic health problems; only 40% of patients treated with thoracic radiotherapy for Hodgkin lymphoma thought of themselves as at risk for breast CA; only 50% treated with cyclophosphamide for breast CA thought of themselves as at risk for infertility; only 20% to 25% of physicians felt they had adequate time for anticipatory guidance (only 2%-11% counseled pa­tients during CA-related visits)

Modifiable targets for intervention: primary prevention issues; secondary prevention (eg, breast and testicular self-examination, mammography, magnetic resonance imaging of breasts, skin examination, prostate-specific antigen level testing, colonoscopy, organ-specific screening for toxicity)

Impact of survivorship research: reduction in use of chemoradiotherapy (anthracyclines, alkylating agents, use and dosage of cranial and thoracic radiotherapy); improvement in preventive strategies (guidelines for long-term moni­toring, organ-specific guidelines, cancer screening for susceptible populations, and some chemoprevention)

Barriers to survivorship care: health care system cumbersome; lack of awareness of need; unrealistic patient expec­tations; patients with literacy difficulties; competition with other priorities; limited access to care; impression that surveillance causes harm

Program components and capabilities: coordination of care by multidisciplinary core team; access to diagnostic monitoring; access to medical and behavioral consultants; provision of education; coordination of referrals and fol­low-up; provision of counseling and financial assistance; availability between scheduled appointments; preparation for and assistance with transition of care; ability to track survival beyond transition of care

Desirable components: database for clinical care and research; dedicated space for clinical evaluations; opportuni­ties for training; multidisciplinary and multispecialty treatment

Care models: cancer center  —  patients have continuity of care; risk-adapted approach in place; survivors have sense of belonging; has focus on health education; venue for training health professionals and opportunities for research in place; community model  —  cost effective; more “real world”; has integration with PC; may be more geographi­cally convenient; has focus on wellness and independence; has focus on PC health education

Survivorship Issues in Colorectal Cancer  

Kevin D. Stein, PhD, Associate Professor, Rollins School of Public Health, Emory University, and Director, Quality of Life and Survivorship Research, American Cancer Society, Atlanta, GA 

Background: CRC 3rd most commonly diagnosed CA in United States; overall CA incidence increasing (1.3 million in 2000; expect to double by 2050); 5-yr survival rates increasing (33% in mid 1950s; 67% 1995 to present); sur­vival rate high for localized CRC; >2 million survivors of CRC expected by mid century

Quality of life (QOL): type of treatment, side effects, and impact on QOL vary by cancer location; CA stage affects severity of symptoms and aggressiveness of treatment; physical issues  —  pain and fatigue; emotional issues  —  eg, anxiety, fear of recurrence; late effects of CA therapy  —  eg, cardiovascular effects; may occur years after treatment; social issues  —  eg, employment, return to former role, existential concerns, hope; QOL domains  —  physical, psy­chologic, social, and spiritual well-being

CRC Survivorship Issues

Bowel and bladder dysfunction: inability to slow or defer bowel movement; increased need or inability to void; bowel or bladder incontinence may result in need to wear pads; present in one-third to one-half of CRC survivors; study  —  bowel dysfunction tends to resolve in <3 yr; urinary problems tend to persist ³3 yr

Ostomy: port placed into colon when blockage occurs; temporary if blockage resolved; often permanent in advanced CRC or rectal CA; ostomy often socially inhibiting and/or has negative effect on body image

Sexual dysfunction (SD): erectile dysfunction and ejaculatory disorders seen in men; arousal and painful intercourse seen in women; libido and level of sexual activity decreased in men and women; SD highly prevalent in CRC survi­vors; study  —  SD persistent and increases over time in male survivors

Pain management: misconceptions about medications common (addiction rare when taken for CA as prescribed); side effects manageable; adequate pain relief improves enjoyment of activities and appetite; inadequate pain con­trol can adversely affect relationships; pain management standard part of quality care; media tends to report abuse potential rather than positive aspects

Barriers to adequate pain control: patient-related  —  fear of addiction; knowledge deficit; concern about side ef­fects; provider-related   —  limited time for discussions with patients about pain; limited training in pain manage­ment; system-related  —  affordability; limited availability; lack of insurance coverage

CA-related fatigue: »60% of CRC survivors report severe fatigue; fatigue ranks high on symptom scale; fatigue and sleep difficulties occur soon after diagnosis, but tend to improve over time (persist >10 yr in 30% of patients)

Fear of CA recurrence: prevalence from 22% to 99%; often most distressing emotional problem among CA survi­vors; many different reminders trigger spikes in fear; fear of recurrence may motivate survivors to increase healthy behaviors; may lead to under- or overutilization of health care system; study  —  linear regression to predict positive and negative behavioral change; fear of recurrence positively affected behavioral change; not significant measure of negative change; fear most prevalent in 1-yr survivors; persists in 30% of 5-yr survivors

Overall QOL: study found no significant difference in QOL between CRC survivors and general population; possi­ble explanations  —  use of global measures of QOL (possibly insensitive to differences in QOL in CRC survivors); response shift (survivor’s reference point for acceptable QOL may be different than that of nonsurvivor); long-term QOL  —  study found no difference between patients with CRC treated with surgery vs surgery plus adjuvant ther­apy; poorer QOL reported by patients with benign colon surgery

Predictors of poor QOL: fear of recurrence; younger age; poorer QOL before CRC; advanced disease stage; comor­bidities; poor social support; problems with bowel control; high body mass index; lack of private health insur­ance; study  —  QOL worse in patients with CRC and ³3 comorbidities; age-related decline may affect QOL more than CRC

QOL predictors of survival: multiple studies show that emotional, physical, and social issues predict survival; pa­tients with better QOL live longer

Assessment Tools

Brief screening: Distress Thermometer  — 1-item instrument; distress level rated on scale of 1 to 10; patients with level ³4 referred for additional assessment; Brief Symptom Inventory  —  18-item test; better reliability and validity; cost associated with use

Comprehensive assessment: European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire (QLQ)-C30  —  generic measure for use in all patients with CA; available in multiple languages; assesses major QOL domains; excellent reliability and validity; EORTC CR-29  —  CRC-specific module; separate questions for men and women on sexual dysfunction; Functional Assessment of Cancer Therapy (FACT)  —  FACT-G is generic measure of QOL in chronic illnesses; FACT-C has 13-item scale specific for CRC; more general that EORTC; validity and reliability good

Symptom-specific tools: visual analogue scales for pain assessment; Brief Pain Inventory  —  includes pain location and impact on function; fatigue assessment scales  —unidimensional scales (only measure intensity); multidimen­sional scales measure frequency, duration, and effect on QOL; Multidimensional Fatigue Symptom Inventory  —measures fatigue in all QOL domains; used in research

Fear of recurrence: Kornblith Scale  —  5-item unidimensional scale measures intensity only; Concerns About Recur­rence Scale  —  validated for breast CA only; Fear of Cancer Recurrence Inventory  —  42-items; 7 subscales; vali­dated in French-Canadian population; English version in development

Sexual functioning: sex-specific multidimensional scales (Female Sexual Function Index and International Index of Erectile Dysfunction) available

Management of CRC Survivors

Stress management: by oncologist or PCP  —  medication; consultation with colleagues; preventive care; referral to specialist  —  for severe problems (eg, pain management, mental health issues); self-administered  —  use of stress management techniques; counseling on appropriate use of complementary or alternative treatment; provision of in­formation resources

American Cancer Society recommendations: maintenance of healthy weight; adoption of physically active life­style; consumption of healthy diet (based on plant sources); limiting alcohol

Institute of Medicine reports: specific information on care of CA survivors; From Cancer Patient to Cancer Survi­vor: Lost in Transition  —  focuses on continuity of care during transition from oncologists to PCP

Stages of survivorship care: preventive efforts; monitoring for recurrence and QOL issues; intervention when needed; coordination of care

Survivorship care plans: completed by oncology team member; provided to patient and PCP at end of treatment; ad­vises PCP of treatment-associated risk factors; provides plan for surveillance; addresses psychosocial and lifestyle issues; American Society for Clinical Oncology provides CRC-specific care plan (available for download from website); multiple internet resources available (eg, websites of American Cancer Society and National Cancer Insti­tute)

Acknowledgements

Dr. Friedman was recorded at Cardiology and Oncology Partnership’s 4th Annual International Symposium, held October 7-9, 2010, in Nashville, TN, and sponsored by the Vanderbilt University School of Medicine. Dr. Stein was recorded at 13th Annual Charles William Rasco III Symposium on Colorectal Cancer, held March 19-20, 2010, in Little Rock, AR, and sponsored by the University of Arkansas for Medical Sciences College of Medicine, Division of Hematology/Oncology. The Audio-Digest Foundation thanks the speakers and sponsors for their cooperation in the production of this program.

Suggested Reading

Anthony T et al: Effects of treatment for colorectal cancer on long-term health related quality of life. Ann Surg oncol 8:44, 2001; Arndt V et al: Quality of life in patients with colorectal cancer 1 year after diagnosis compared with the general pop­ulation: a population based study. J Clin Oncol 22:4829, 2004; D’Angio GJ: Pediatric cancer in perspective: cure is not enough. Cancer 35(3suppl): 866, 1975; Denlinger CS, Barsevick AM: Challenges of colorectal cancer survivorship. J Natl Compr Canc Netw 7:883, 2009; Hawkins NA et al: Health related behavior change after cancer: results of the American Cancer society’s studies of cancer survivors (SCS). J Cancer Surviv 4:20, 2010; Jayne DG et al: Randomized trial of lapa­roscopic assisted resection of colorectal carcinoma: 3 year results of the UK MRC CLASICC trial group. J Clin Oncol 25:3061, 2007; Kadan-Loddick NS et al: Childhood cancer survivors’ knowledge about their past diagnosis and treatment. JAMA 287:1832, 2002; Montazeri A: Quality of life data as prognostic indicators of survival in cancer patients: an over­view of the literature from 1982-2008. Health Qual Life Outcomes 7:102, 2009; Oeffinger KC et al: Chronic health condi­tions in adult survivors of childhood cancer. N Eng J Med 355:1572, 2006; Partridge AH et al: Web-based survey of fertility issues in young women with breast cancer. J Clin Oncol 22: 4174, 2002; Rowland JH: Cancer survivorship: a new challenge in delivering quality cancer care. J Clin Oncol 24:5101, 2006; Steginga SK et al: Antecedents of domain specific quality of life after colorectal cancer. Psycho-oncology 18:216, 2009; Trentham-Deitz A et al: Health related quality of life in female long term colorectal cancer survivors. Oncologist 8:342, 2003