Quality of Life

September 26, 2011

Quality of life, as a concept, has various meanings and definitions. The World Health Organization has defined quality of life as “an individual’s perception of their position in life in the context of the culture and value system in which they live and in relation to their goals, expectations, standards, and concerns. It is a broad ranging concept affected in a complex way by the person’s physical health, psychological state, level of independence, social relationships and their relationships to salient features of the environment.”

Quality of life research can be applied to various disciplines, such as politics and economics, but is primarily used in medical contexts. In a medical context, quality of life is referred to as “health-related quality of life.” Health-related quality of life research measures the way illness, disease, and treatment affects a patient’s welfare. The idea is that the information gained directly from patients can help health care professionals assess the patient’s condition. The results of such data assist health professionals in determining, among other things, whether a particular course of treatment should be continued, or if a different course of treatment would be more beneficial. Quality of life data enable health professionals to compare treatments, monitor the overall progress of individual patients, and receive a better understanding of an individual patient’s beliefs regarding his or her treatment and well-being.

Quality of life research can be done in various ways. A health professional, for example, can conduct an open-ended interview with the patient. Most quality of life research, however, is done through questionnaires. While questionnaires can be administered through an interview, most are self-administered.

Quality of life questionnaires measure, usually by assigning a numeric value to each answer, the patient’s perceptions, beliefs, feelings, and expectations regarding different domains. Common domains include physical health, psychological health, social relations, level of independence, environment, and spirituality, religion, or personal beliefs. For each domain, various questions are asked to give the health professional an idea of the patient’s appraisal of his or her well-being in that area. For example, when attempting to gage a patient’s physical health, the questionnaire may include questions concerning energy, fatigue, pain or discomfort, sleep or rest, health habits, sensory functions, mobility, nutrition, and illness symptoms. Similarly questions used to assess psychological health may include inquiries regarding body image, appearance, negative and positive feelings, self-esteem, education, learning and the opportunity for continued learning, concentration, memory, emotional functioning and fulfillment, anxiety, stress, depression, and the ability to cope.

There are over 800 questionnaires that measure health-related quality of life. These questionnaires, however, can generally be labeled as either generic or specific.

Generic questionnaires are designed to assess many domains of health-related issues, and are based on a broad and global concept of quality of life. There are two types of generic questionnaires: health profiles and health indices. Health profiles include inquiries concerning a large range of health-related domains and uses questions related to various aspects of subjective health status. As the patient answers each question, a numerical score based upon the patient’s answer is figured for each domain. Health indices questionnaires also ask various health-related questions. However, unlike the health profile questionnaires, health indices questionnaires combine the scores each answer generates into a single number. The number is then placed in a range, with, for example, 0 being death and 1.0 being perfect health.

The numerical score, or scores, arrived at using generic questionnaires contribute to a health care professional’s understanding of a patient’s needs, as it reflects the patient’s perception of his or her life. This perception is important because a patient has a unique perspective on his or her quality of life that cannot necessarily be arrived at by others. A paraplegic, for example, might perceive his or her quality of life as not differing much from that of able-bodied individuals. However, an evaluation of the paraplegic’s quality of life that is performed by an able-bodied individual may result in a lower score than the paraplegic himself or herself would have arrived at. Such a result could be partially explained by the fact that, for example, an able-bodied individual may place a higher value on the ability to stand and walk than the paraplegic does. Bringing the patient’s perceptions to the attention of the health professional promotes the development of a comprehensive treatment plan. The health care professional can learn what aspects of the patient’s life the patient is satisfied with or believes need improvement. This information permits the health care professional to put more or less weight on various treatment goals. If a patient’s primary objective, for example, is pain management, awareness of this objective will help a health care professional develop a treatment plan that places more emphasis on this goal. Knowing the patient’s perception of his or her overall condition could also assist the health care physician in making decisions concerning the effectiveness or continuation of various treatments.

Specific health-related quality of life questionnaires are designed to measure the quality of life of patients with a specific condition. There are four basic types of specific questionnaires:

  1. Domain specific. This type of questionnaire only inquires as to one domain. For example, the questionnaire could be designed to solely assess the patient’s psychological health.
  2. Disease specific. This form of questionnaire is concerned with the quality of life of individuals with specific conditions. Thus, a questionnaire that measures the health-related quality of life for individuals with spinal cord injuries would be disease specific.
  3. Population specific. This type of questionnaire is used to determine the health-related quality of life in the population being studied. This type of questionnaire is often used to gain information about subgroups like adolescents and nonsmokers.
  4. Symptom specific. These questionnaires are used to gain information about one symptom. By concentrating on one symptom, like insomnia, the results of this type of questionnaire can provide physicians with valuable information about the disease, various forms of treatment, and any changes that may result from treatment.

Once an individual’s health-related quality of life has been determined, the health professional and patient can take steps to improve the patient’s quality of life. The steps taken to improve the individual’s health-related quality of life could vary from stress relief to pain management. Improving one’s health-related quality of life is extremely individualized and will vary with each patient’s state of health.

Every individual could improve his or her health-related quality of life. For the average individual, their health-related quality of life could generally be improved by taking steps to, among other things, reduce stress, improve nutrition, increase relaxation and exercise levels, increase energy level, strengthen social bonds, improve self-image and self-esteem, and reduce fatigue.

Improving the health-related quality of life for individuals who suffer from an injury, illness, or disease is more complicated because these individuals often deal with additional symptoms, such as chronic pain and fatigue, which the average person does not face. The injured, ill, or diseased may also face mobility and independence issues. Improving the health-related quality of life for these individuals might include: finding a successful treatment regime, decrease illness symptoms, and discovering methods that will increase both mobility and independence, create strong channels of support, strengthen coping mechanisms and spirituality, decrease depression, and increase emotional functioning.

Individuals nearing the end of their life, including the elderly and terminally ill, often face a hard decision: quantity of life or quality of life. Rather than taking measures to extend their lives, many individuals choose to improve the quality of the life they have remaining. Individuals who are nearing death are often concerned with issues including pain control, fatigue, symptom management, autonomy, maintaining a sense of control over decision-making, avoiding a prolonged death, strengthening the relationships with loved ones, the burden of physical care, spirituality, burial arrangements, and the burden placed on loved ones who may have to make decisions concerning life-sustaining treatment.

An individual who is facing death can improve his or her quality of life, at least to a degree, by addressing some of the above-mentioned concerns. For example, the individual can work with physicians to find a regime that could help manage symptoms and pain.

Legal documents, such as advance directives, could also be utilized to relieve the individual of decision-making concerns. For instance, the individual could execute a living will, thereby making his or her wishes concerning life-sustaining treatment known. The individual could also execute a document known as a durable power of attorney. A durable power of attorney would permit the individual to retain decision-making power as long as he or she remains legally competent. The document also allows the individual to elect a person to act as a decision-maker if the individual were to become incompetent. By discussing the dying individual’s wishes with the elected decision-maker, the individual can ensure both his or her health care wishes are known and the elected decision-maker is willing to accept the responsibility of respecting those wishes. A second form of durable power of attorney could also help improve the quality of life of the dying. By executing a durable power of attorney over property, an individual, who may become unable to manage financial affairs, can ensure his or her property and bills will be managed by a person of his choice.

Further, the execution of a will and the prearrange-ment of burial planning could also be utilized to make the dying individual’s intentions known. Such measures relieve the dying individual’s reluctance to leave loved ones with the burden of making such decisions.

Whether an individual is in perfect health or is dying from a terminal disease, measures can be taken to improve his or her health-related quality of life. Moreover, the data collected in quality of life research, which reveals valuable information about diseases, treatments, and health care in general, can be utilized to improve the quality of life of future patients.

See Also: Disability, Durable power of attorney for health care, Hospice, Living wills

Suggested Reading

  • Andrews, F. (Ed.). (1986). Research on the quality of life. Ann Arbor: University of Michigan, Institute for Social Research.
  • Camilleri-Brennan, J., & Steele, R. J. C. (1999). Measurement of quality of life in surgery. Journal of the Royal College of Surgeons of Edinburgh, 44, 252-260.
  • Crammer, J. (1999). Quality of life assessment in clinical practice. Neurology, 54(Suppl. 2), S49-S52.
  • Larson, D., & Tobin, D. (2000). End of life conversations: Evolving practice and theory. Journal of the American Medical Association, 28, 1573-1578.
  • Singer, P., Martin, D., & Kelner, M. (1999). Quality of life care: Patients’ perspective. Journal of the American Medical Association, 281, 163-168.

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