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Cancer Survivorship Quality of Life
Ernest H. Rosenbaum, MD

Assessing the Quality of Life for Long-Term Cancer Survivors

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An article by Craig C. Earl, Deborah Schrag, Steven Woolf, and Patricia Ganz entitled, "The Survivorship Care Plan: What, Why, How, and For Whom?" presented at ASCO 2006, in the American Journal of Clinical Oncology, 2006 Educational Book, pg. 525-531, discusses the role of primary care in cancer survivorship. "Primary care physicians play an important role in the delivery of survivorship care. The largest proportion of physician office visits for cancer care - 32% - is made to primary care physicians, compared with 18% for oncologists...Cancer care specialists lack the time and work force size to provide follow-up care to the nation's growing population of cancer survivors."

They felt that although the primary care physicians were better positioned to give care, they faced formidable challenges, needing guidance and available information to provide ongoing cancer survivorship follow-up care. They also lacked expertise and would require information and possible training, and this is being developed by ASCO through cancer survivorship guidelines and strategies for implementation through the survivorship care plan and guidance.

Assessing the Quality of Life for Long-Term Cancer Survivors
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Defining quality of life is somewhat difficult, as it varies for each person and each person's personal situation. Betty Ferrell, RN, PhD, FAAN recently attempted to define quality of life in four domains:

1. Physical well-being is being able to be in control of symptoms and maintaining both function and independence.
2. Psychological well-being is being in control of life while facing a life-threatening illness with emotional distress and not knowing the future, but maintaining as positive a life as possible.
3. Social well-being is dealing with the impact of cancer and its subsequent problems.
4. Lastly, spiritual well-being is maintaining hope, deriving meaning and having a philosophy of life.

Under physical well-being is the ability to function actively and maintain strength, control of fatigue and sleep, and general physical health. It's also being able to compensate for physical losses such as hair and appearance and trying to maintain an active sexual life.
Under psychological well-being is control of anxiety, depression and distress that occurs following a diagnosis of cancer and trying to gain maximal enjoyment in life, control of fear of recurrence, cognition alterations and treatment side effects.
Social well-being includes the interrelationships within the family, enjoyment of life, trying to decrease isolation, and maintaining financial and work activities as much as possible.
Spiritual well-being includes philosophic thoughts of the meaning of life, personal religious or spiritual integrity, and maintaining hope and inner strength.

Reviewing these domains, one appreciates the complexity and variability of the meaning and quality of life for each person. Following the diagnosis and treatment of cancer, a person goes through both physical and psychosocial changes, which to some become devastating and difficult to cope with. A lot depends on one's age, prior philosophy and happiness with life, and ambitions, all of which are altered by the presence of disease. Each week the playing field changes, as following chemo and radiation therapy, the blood counts can drop, often putting the person at risk for infection. The loss of hair or changes in body appearance become a very important problem to deal with and often cause great distress. If one has more advanced disease or metastases, one has to deal with additional problems of pain, debility, and use of medications that can often cause fatigue, sleepiness, and memory problems. For women, there may be premature menopause, causing hot flashes and other menopausal symptoms, and for those undergoing bone marrow transplantation, survivors undergo grave toxicities, which are often life-threatening.

There are many psychological fears, such as the fear of recurrent disease, even when on therapy, initiating anxiety, as well as distress, depression, and mood changes often due to drug therapies such as corticosteroids (Prednisone) or just from being ill, with thoughts of future ongoing treatments, debility, and the possibility of dying.

There is a need for active supportive programs, including maintaining good healthy nutrition, physical activity and exercise, and maintaining an active social life.

To maintain a positive social well-being, one needs support from family and friends, as well as trying to maintain courage and hope for recovery and better health. Joining a support group has been helpful to many patients, and often, personal and family counseling can promote a positive attitude and courage to survive.

Many patients find solace for spiritual well-being through religion or spirituality, and this support, often from the congregation and friends, can promote not only a positive attitude, but can be especially helpful during a very stressful time in life. Philosophically, looking for meaning in life is a common focus for many people after being diagnosed with cancer, and life becomes changed forever. There are many who find a very positive aspect in these changes, which helps them cope with the problems incurred from having the diagnosis and throughout the treatments.

There are many long-term and late complications from therapy that can be cardiac, kidney, bladder damage (Cytoxan), coronary and carotid artery disease, cataracts, weight gain or weight loss, cognitive problems, and muscle atrophy, often due to inactivity.

Debility from the cancer or the treatments becomes a major problem, as the side effects include weakness, oral dental problems, lymphedema, bladder incontinence, sleep and pain disturbances, vaginal dryness, and erectile dysfunction. There are other physical problems if one has an ostomy, hair loss, or amputation. Chronic illness problems include hypertension, osteoporosis, and arthritic symptoms.

There can also be a compromise in the immune system, which increases susceptibility to various infections, as well as lowering the immune resistance to a second cancer. Endocrine damage also occurs, especially thyroid dysfunction when the neck has been radiated.

Thus, as one tries to formalize a reasonable conception of quality of life, one finds many domains that contain acute and long-term problems affecting how one lives. It also highlights the need for guidance and supportive care to cope with all the potential and actual problems that are present following a diagnosis of cancer, its treatment, and its post-treatment and long-term follow up.

Reference: Ferrell, B., Hassey, K., "Quality of Life Among Long-Term Cancer Survivors," Oncology, April 1997, vol. 11, #4, pg. 565-576.

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First appeared July 17, 2007; updated March 4, 2008