Quality of Life & Gynecological MalignanciesWHEC Practice Bulletin and Clinical Management Guidelines for healthcare providers. Educational grant provided by Women's Health and Education Center (WHEC).
In gynecologic oncology, every clinical intervention has two distinct aims. One is to produce objective improvement in the patient's medical condition and second aim, regardless of whether medical improvement is possible, is to produce amelioration of the patient's subjective symptoms. Helping the patient get better and feel better. Communication skills are essential for both. While there has been a dramatic improvement in the cure rate of gynecological malignancies and women survive longer than 5 years, with what is commonly considered a "chronic" cancer. In each phase of the illness -- diagnosis, surgery and chemotherapy with curative intent, remission and survivorship, relapse and sequential chemotherapy, bowel obstruction and end of life; quality of life (QOL) is one of the most important considerations.
The purpose of this document is to facilitate integration of quality of life (QOL) research into clinical practice. There has recently been a large increase in studies reporting the assessment of QOL; that has changed the field from descriptive reporting to quantitative science. History and development of QOL evaluation and various approaches to QOL assessment (psychometric based and utility based) are also discussed. It describes strategies for meaningful interpretation of QOL profiles. We hope the science of the study of QOL will be the foundation and confirmation of many of the anticipated advances for patients.
Goals of Cancer Treatments:
Every year in the United States more than a million people become cancer patients (1). Cancer treatment has 3 goals: to improve the cure rate; length of survival; and quality of life (QOL). In each phase of illness QOL is one of the most important considerations. QOL is a subjective, multidimensional construct of the patient's perception of all aspects of her health experience. Definitions can be as simple as "well being", or the patient's satisfaction with life and general sense of personal well-being. The National Cancer Institute defines QOL as the "overall enjoyment of life". Fear and hopelessness clearly play into how people cope with cancer. However, QOL is more complex than happiness, and this definition can be extended to include performance of everyday activities that reflect well-being, satisfaction, functioning (physical, psychologic and social) and control of disease. The World Health Organization broadened the definition of QOL to include the context of the culture, personal value systems, goals, standards and concerns. Outcomes and utility research has taken this definition yet further to all aspects of care and health-related experience that affects patients. Although, it remains a challenge to define and measure QOL and to analyze and present QOL data, vital advances have already been made and refined this field to a science.
QOL measures in oncology have the potential to be used to study populations in randomized clinical trials to aid patient-physician interactions in routine practice and to support policy decision making and economic evaluation of healthcare provision. Eastern Cooperative Oncology Group (ECOG) has simplified into Zubrod Scale (0 = asymptomatic, 1 =symptomatic, 2 = functional for more than half the day, 3 = functional for less than half the day, 4 = moribund). Performance status probably remains the single most significant "bias" that contributes to the big difference between the results of phase II studies (2). Early QOL studies rapidly revealed a considerable discrepancy between observers and between the physician's and patient's evaluation of the patient's QOL. It became clear that any method of measuring QOL, quintessentially subjective, would have to rely on patients themselves and not caregivers. Tools that could be systematically evaluated are available, and a simple composite measure of clinical benefit (measurements of pain -- analgesic consumption and pain intensity; performance status and weight).
Quality of Life (QOL) Domains:
The most common side effects of chemotherapy that adversely affect QOL are hair loss and peripheral neuropathy. Most common symptoms are fatigue, pain, nausea, weight loss, and fear. To summarize QOL domains (3):
- Demographic -- age, ethnicity, education, employment, and income.
- Physical / Functional -- activity, appearance, appetite, condition, comorbidities, fatigue/sleep/rest, disease stage/status, genetics, symptoms and side effects.
- Psychological -- anxiety/fear, body image, control, coping, depression, enjoyment, optimism, perception and interpretation, prior experience.
- Social -- family, life events, relationships, roles, sexuality and support network.
- Spiritual -- hope, meaning/purpose, religion and spirituality.
The worst symptoms of cancer are fear, anger and depression in particular fearing loss of control. Patients tend to identify a "good health" as one in which symptoms are well controlled, they know what is going on and they do not feel a burden on anyone. Patients expect to receive "good" care, competent and kind. Major depressive disorders occur in 10-25% of cancer patients as compared with 2% prevalence in the general population. Antidepressants work approximately 60% of the time, and there is only modest benefit from psychosocial interventions. As physical functioning deteriorates, spiritual and psychologic issues take precedence. The psychologic distress in the spouse or primary caretaker, whose QOL often is significantly worse than that of the patient should not be ignored or underestimated. Time heals, but invariably and incompletely.
Why Communication Skills Matter?
Good communication skills facilitate the clinician's ability to take an accurate clinical history and therefore to make a correct diagnosis and an appropriate plan of management. Communication skills are a central component of every clinician's management skills. In addition, good communication skills change the patient's attitude to the entire medical intervention. It may affect what the patient perceives has happened to her, and her assessment (and feelings) about her management, her treatment, and her healthcare team. The issues faced by short- and long-term survivors are clearly different. Given the limited gains in survival time, enhancement and preservation of QOL are increasingly important.
There are probably an infinite number of ways of summarizing and simplifying medical interviews, but few (if any) are practical and easy to remember. Dealing with emotions is the most difficult part of any clinical interview (4). In brief, the five main components of the medical interview to address patient's concerns and good evaluation are: Physical context or setting; Listening skills; Acknowledgement of emotions and explore them; Management of strategy; Summary and closure. It is important to be honest when we do not understand what the patient means. Clarification gives the patient an opportunity to extend on the previous statement and/or amplify some aspect of the statement, and shows that the clinician is interested and caring. The empathic response is an extremely useful technique in an emotionally charged interview and has nothing to do with your own personal feelings. It is simply a technique of acknowledgement, showing the patient that you have observed the emotion she is experiencing. It consists of three steps: identifying the emotion that the patient is experiencing; identifying the origin and root cause of that emotion; responding in a way that tells the patient that you respect their concerns.
In gynecologic oncology the relationship with the patient is likely to be continuing one and a major component of the patient's treatment. The closure of the interview is an important time to emphasize that point. Identification of any important issues that need further discussion (even if you do not have time to discuss them in this interview), reassuring her to address it during her next visit builds a good patient-physician relationship. Use of language intelligible to the patient and information in small pieces are usually well understood by the patients.
Although the mortality rate is less than 5%, as many as 50% of patients may have a major complications. Patients must play an integral and prominent role in the assessment of their own QOL. The baseline QOL scores predict survival and may serve as an early barometer of patients who may or may not respond to more aggressive treatment. Quality of life (QOL) instruments may be generic to all cancers or targeted to specific diseases. Generic and disease-specific instruments have competing advantages and disadvantages. Instruments that strike a balance between these two approaches have tended to become most popular in oncology. Disease-specific and treatment-specific questions are usually of benefit when added to a general measure of QOL. Together they can provide comparability across different cancers and sensitivity to specific issues or symptoms relevant to a given malignancy or treatment. For example, patients receiving treatment for vulvar cancer with radical vulvectomy and groin lymph-node dissection may suffer from lower extremity lymphedema. In contrast, lymphedema is not a common occurrence among patients with endometrial cancer. The availability of disease-specific questions, which target specific patients, is therefore an asset because it allows for the ideal combination of questionnaire length and content covered.
The psychometric approach includes generic health-profile measurement and specific instruments intended to measure the multidimensional impact of a specific disease, treatment, or condition. It provides measurement of subjective or perceived well-being. A subtle barrier reflects the fear that addressing QOL issues will take the lid off desperate, difficult and hopeless issues. Identifying needs does not increase them. Association between engaged social support and better social well-being leads to better physician-patient relationships. Hope, which gets us out of bed in the morning, and how much of a burden the patient feels she is to the caretaker, profoundly influences reported QOL. The diagnosis of gynecologic cancer appears to influence patient's sexuality beyond the physical changes associated with cancer and treatment. Many patients regain their sexual identity and interest with the treatment of their disease and the passage of time. However, cancer patients are more likely to find their reduced libido distressing.
Chemotherapy-related toxicity is rated as having the highest impact on QOL by most patients. However, patients are willing to accept higher toxicity in exchange for potential gains in survival. The treatment of recurrent ovarian cancer and other gynecological malignancies requires a careful balance between the goals of controlling disease and avoiding toxicities of second-line treatments. Recurrent gynecological malignancies generally regarded as an incurable disease. The goals of treatment include control of disease, palliation of symptoms, and improving or maintaining QOL. The extent to which QOL is supported by second-line treatment has not been well established. Quality of life will play an increasingly important role in future studies of promising agents for recurrent disease.
Quality of life (QOL) is a powerful predictor of personal survival and health more than in just the emotional area of cancer care. It is often more predictive than standard biometric or pathophysiologic parameters. A prevalent myth in the cancer subculture is that oncology professionals do not appreciate the human side of cancer. In the era of managed care, aspiring to be connected with patients in the face of internal and external pressures, such as limited time and conflicts such as academic and financial advancement, is a challenge. The humanities perhaps teach us that attending to the QOL of the caregivers will do much for the QOL of patients, the science of QOL study will be the foundation and confirmation of the next substantial advance for patients. There continues to be as much need for large, prospective, randomized trials as there is for effective integration of the evaluation of QOL into the one-on-one clinical care of patients.
Oncology is definitely dominated by the "do-something" attitude, which holds that doing something to treat the cancer in and of itself makes people better (5). In QOL instruments weigh heavily on emotional domains. Despite the fact that patients have had their QOL measured, the major challenge for the field remains the integration of QOL research into clinical practice. Enhanced patient-physician communication is helpful to improve health outcomes.
- Edwards BK, Howe HL, Ries LA et al. Annual report to the nation on the status of cancer, 1973-1999, featuring implications of age and ageing on US cancer burden. Cancer. 2002;94:2766-2792.
- Study protocol for the World Health Organization project to develop a QOL assessment instrument (WHOQOL). Qual Life Res. 1993;2:153-159.
- Penson R, Cella D, Wenzel L. Quality of life in ovarian cancer. J Repro Med. 2005;50:407-416.
- Ferrell B, Smith SL, Cullinane CA et al. Psychological well being and QOL in ovarian cancer survivors. Cancer. 2003;98:1061-1071.
- Cella D. What do global quality-of-life questions really measure? Insights from Hobday et al and the "do something" rule. J Clin Oncol. 2003;21:3178-3179; author reply 3179.
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