In the 1960s and ’70s, combined chemotherapy and other advances enabled cancer patients to survive what previously had been largely incurable diagnoses. This progress spawned initial ripples of talk about quality of life in the medical literature—but just a few ripples. Today we have 25,000 PubMed hits for “quality of life cancer,” routine inclusion of quality-of-life endpoints in treatment investigations, and the fact that numerous studies specifically address the clinical consequences of cancer and cancer treatment above and beyond tumor control.
From this current vantage point, it may be difficult to imagine a time not long ago when such issues fell far below the radar screen. Few publications mentioned treatment impact beyond tumor shrinkage. Few investigators studied such issues, although Abeloff et al published a chart review study of the incidence of anticipatory nausea in 1982. Even fewer were willing to add quality-of-life endpoints to cooperative group trials. Marty Abeloff was one of those special, prescient few.
In about 1984, my friend and then–Eastern Cooperative Oncology Group (ECOG) colleague Marty Abeloff helped win the battle for inclusion of quality-of-life endpoints in a cooperative group trial, and one of the earliest such studies was born, tacked on to two ECOG protocols. Following primary surgery for breast cancer, women were randomized to either EST 6177, which assessed CMFP (cyclophosphamide, methotrexate(Drug information on methotrexate), fluorouracil(Drug information on fluorouracil), prednisone(Drug information on prednisone)) vs CMFP plus tamoxifen(Drug information on tamoxifen), or to EST 1180, which compared CMFP to observation. Anxiety levels of women in the two groups were compared. This was a small but important victory that helped enable today’s strong emphasis on quality-of-life issues. In 1986, Marty became chair of ECOG’s Breast Committee, where he encouraged continued focus on these concerns.
Three Key Factors
In addition to the sensitivity of investigative and clinical leaders like Marty Abeloff, three other factors were crucial in bringing these issues to the fore. One was the apparent government recognition that very few of our numerous cancer trials were producing clinical benefits in terms of tumor reduction. This led to expansion of the “clinical benefit” definition to include quality of life:
In the early 1980s, after discussion with the ODAC, the FDA determined that cancer drug approval should be based on more direct evidence of clinical benefit, such as improvement in survival, improvement in a patient’s quality of life (QOL), improved physical functioning, or improved tumor-related symptoms. These benefits may not always be predicted by, or correlate with, ORR [objective response rate].
The second major influence came from the other side of the health-care spectrum, bringing psychosocial expertise to bear on oncology treatment and research. Jimmie Holland, appropriately considered the “mother” of the then-new field of psycho-oncology, Patricia Ganz, whose excellent tribute is also contained in this issue, and many other pioneers played a major role in this effort. With Dr. Abeloff and his like-minded colleagues, they reciprocally balanced, refined, and expanded the move toward a broader purview in cancer management and investigation.
A final important impetus came from sociocultural shifts in patients’ preferences for participating in their own care. Marty Abeloff was more than comfortable with this evolving style of doctor-patient relationship. Communication, decision-making partnership, and shared responsibility for care replaced the more paternalistic approach that had characterized medicine, and especially oncology, since its inception.
Those three main changes—patient and professional recognition of the importance of quality of life, government emphasis on quality of life as a critical outcome measure in clinical trials, an increasingly active role assumed by patients—converged to produce a new kind of cancer care. The new approach took several forms over the past few decades, including development of programs and subspecialties such as pain and palliative care, supportive care, rehabilitation medicine, psychiatry and psychology, survivorship, and integrative oncology, the newest programmatic element that employs nonpharmacologic therapies and permits patients to manage components of their own care.
The field of integrative medicine, or integrative oncology, has endured a number of titles, most recently the unfortunate “CAM,” for “complementary and alternative medicine”—unfortunate because the two terms are dissimilar and do not belong together. So-called “alternative” therapies include ineffective or potentially harmful interventions often billed as legitimate substitutes for mainstream care. “Complementary” therapies are used as adjuncts to mainstream care, providing noninvasive means of symptom control as part of the broader effort to ease the physical, psychosocial, and spiritual distress commonly associated with cancer.
Ancient cultures tended their ill with techniques available at the time—touch, sound/music, spirituality, meditation, acupuncture, medicinal plants. These worked well to sooth and calm, but did little to fight disease. Traditional practices were replaced in the developed world with new scientific knowledge and technology. These advances produced increasingly successful cancer treatments, eventuating in the more than 10 million US citizens alive today 5 years after treatment for cancer.
Attraction to Prescientific Therapies
Modern cancer treatments produce for industrialized countries more than three times the cancer cure rates seen in undeveloped countries. However, until science develops more targeted, less toxic therapies, patients will continue to face serious pain, hot flashes, xerostomia, nerve damage, mobility impairment, anxiety, and worries about recurrence that may persist for years. As more cancer patients survive, we are granted the novel opportunity to concern ourselves not only with maintaining life, but also with preserving its quality. Ironically, it is the prescientific therapies that patients most often seek to meet that goal.
Dozens of surveys internationally show that up to 85% of cancer patients take advantage of evidence-based touch therapies, acupuncture, physical activity efforts, mind-body therapies and the like to combat depression, anxiety, insomnia, and the physical symptoms associated with cancer treatment. Patients surveyed consistently believe that these therapies improve their quality of life, by helping them cope with stress, by decreasing symptoms, and, importantly, by offering them some control over their treatment and well-being. As Marty Abeloff knew when he initiated integrative medicine programs at Hopkins, the great majority of cancer patients actively seek complementary therapies, and an even greater majority of breast cancer patients do so.[7,8]
There are multiple reasons for this attraction, including perceived deficiencies in mainstream cancer care as well as value placed on complementary therapies. Modern cancer care may be perceived as overly technical, fragmented, and depersonalized. Patients may regard selection and use of complementary therapies as empowering. They appreciate the focus on spiritual and emotional well-being, the individualized attention, and the connection to ancient methods of symptom control.
Today, complementary therapies are increasingly available in cancer programs and centers, and their effectiveness in managing many symptoms is increasingly well-studied. Integrative oncology, the synthesis of gold-standard care and evidence-based complementary modalities, deals not only with the patient’s tumor, but also with her physical and emotional needs and with the relevant cultural, scientific, and policy issues. This synthesis was one of Marty Abeloff’s main professional goals.
—Barrie Cassileth, PhD