Correspondence
Assessment of Quality of Life
N Engl J Med 1996; 335:520-522August 15, 1996
- Article
To the Editor:
Drs. Testa and Simonson (March 28 issue)1 raise important issues in measuring the quality of life. Oncology trials generally report only a single dimension — time, as in the duration of remission or median survival. A three-dimensional measure to assess the “volume” of life would be more relevant. It could be described with the following equation: quality of life = (L) × (Σ(qol)n I) × M. The overall quality of life depends on the length of life (L), the sum of the quality of life (qol) in “n” different areas multiplied by the importance (I) of each area, and the transpersonal meaning (M) of that area. Individual areas of quality will be measured in ways relevant to that domain, as illustrated in Figure 1 and Table 1 of the article.1 The importance of each domain, however, determines the overall quality of life, since patients with terminal illnesses often describe their quality of life as high even in the face of severe physical and social restrictions.2 The additional relevant variable is the meaning or depth of life, as described by the theologian Paul Tillich.3 Particularly when confronted with life-threatening illness, people find that the spiritual or transpersonal aspect of life becomes an increasingly important determinant of the quality of life.
As long as patients feel there is sufficient quality in the areas of life that are important to them or a sufficient sense of meaning, then interventions that prolong life will have a positive effect. Physicians must consider the overall picture, asking about what the patient considers important rather than making assumptions, before choosing a treatment that affects or extends life.
3 ReferencesWilliam M. Buchholz, M.D.
1174 Castro St., Suite 275, Mountain View, CA 940401
Testa MA ,Simonson DC . Assessment of quality-of-life outcomes. N Engl J Med 1996;334:835-840
Full Text | Web of Science | Medline2
Cohen SR ,Mount BM . Quality of life in terminal illness: defining and measuring subjective well-being in the dying. J Palliat Care 1992;8:40-45
Medline3
The depth of existence. In: Tillich P. The shaking of the foundations. New York: Charles Scribner and Sons, 1948:52-63.
To the Editor:
A difficult issue is the assessment of quality-of-life outcomes in special populations, particularly children and adolescents. The extent of the inclusion of such outcomes in studies of this group has lagged far behind the level currently described in investigations of adult patients. For example, less than 5 percent of phase 3 clinical trials of childhood cancer included data on quality of life.1
There are a number of conceptual and technical difficulties related to the assessment of quality of life in children and adolescents, including the wide range of development that must be accounted for in studies of patients ranging in age from infancy to young adulthood, the difficulty of assessing secular changes as children move from one developmental stage to the next, and the regular use of proxy informants, because of age or cognitive impairment.2
In pediatrics, we must know not only how the scores can be interpreted, but also how responsive they are to changes in clinical status, how parents' reports correspond to those of their children, and which specific dimensions of quality of life must be included across each age range. Assessing the impact of disease and treatment on children, adolescents, and families should be an important component of future investigations.
2 ReferencesAndrew S. Bradlyn, Ph.D.
West Virginia University, Morgantown, WV 26505Brad H. Pollock, M.P.H., Ph.D.
University of Florida, Gainesville, FL 32610-01771
Bradlyn AS ,Harris CV ,Spieth LE . Quality of life assessment in pediatric oncology: a retrospective review of phase III reports. Soc Sci Med 1995;41:1463-1465
CrossRef | Web of Science | Medline2
Bradlyn AS, Pollock BH. Quality-of-life research in the Pediatric Oncology Group: 1991-1995. In: Quality of life in clinical cancer trials. Journal of the National Cancer Institute monographs. No. 20. Washington, D.C.: Government Printing Office, 1996:49-53. (NIH publication no. 95-03920.)
To the Editor:
Testa and Simonson point out that patients' subjective perceptions translate the results of the objective assessment into the actual quality of life. Not only do subjective perceptions have normative character, in contrast to objective or descriptive assessments, but also the suggested conceptual scheme presupposes a certain moral view. The authors state that a person who has no brain activity (some philosophers might question whether this is still a person)1 would have no quality of life, even though he or she may potentially live for a long time. One may agree with this statement, but it certainly contains a value judgment, based on an underlying concept that for life to have any quality mental abilities are required. There are other views.2
It is only a short step from regarding someone as having no quality of life (which in the case of absent brain function is based entirely on an external assessment) to making a judgment about which lives are worth sustaining and which are not. Means can merge with aims. According to Testa and Simonson, we measure the quality of life “in order to evaluate the human and financial costs and benefits” and to determine whether “expenditures for health care are justified.” Nevertheless, prescriptive choices seem to be unavoidable. The selection of a particular instrument determines the way in which the various dimensions are covered. The interpretation of and the weight given to the results seem to be a question of decision rather than discovery.
The threshold in the continuum of quality of life at which a change in conduct is required is a matter of choice and cannot be determined by measurement. Undeniably, the use of quality-adjusted years of life has considerable philosophical presuppositions at conceptual and practical levels (e.g., regarding concepts of justice and fairness).3 These difficulties should not preclude quality-of-life assessments. However, we must be aware of inherent moral judgments. Despite validation and the establishment of biometric standards we should not pretend to work only with descriptive scientific tools, such as blood counts, x-ray films, and survival analyses, but rather accept that we derive some important guidance from patients' preferences.
3 ReferencesJohannes G. Meran, M.D.
Hannover University Medical School, D-30623 Hannover, Germany1
Parfit D. Reasons and persons. Oxford, England: Oxford University Press, 1984.
2
Kennedy I, Grubb A. Medical law — text with materials. 2nd ed. London: Butterworths, 1994:1179.
3
Harris J . Qualifying the value of life. J Med Ethics 1987;13:117-123
CrossRef | Web of Science | Medline
Author/Editor Response
The authors reply:
To the Editor: Bradlyn and Pollock raise important issues regarding quality-of-life measurement in children. Recently, our work with the AIDS Clinical Trials Group (ACTG) involving a multidimensional approach to measurement in adults with human immunodeficiency virus (HIV) infection1 was adapted for children with HIV.2 However, three versions corresponding to three developmental stages (the ages of 6 months to 4 years, 5 to 11 years, and 12 to 20 years) were necessary, and for children under 12 years old, the respondent is not the child, but the child's primary caretaker. The pediatric longitudinal study ACTG 219 should soon provide additional information on these issues, but more studies are clearly needed for other disease states.
Meran and Buchholz are concerned about the conflicts between external and internal judgments regarding the valuation of life. Meran is concerned about imposing external moral judgments when one is assessing the quality of life, as is the case when committees rate a particular state of health. Such external ratings ignore the subjective component of the quality of life and therefore do not fit our criteria for measurement. In the computation of a quality-adjusted year of life (a measure often used by health economists), the length of life is multiplied by a number between 0 and 1 (called a “utility”) representing the fraction of full health corresponding to a particular health state. The utility represents the strength of a person's preferences for different health outcomes under conditions of uncertainty, a situation that requires the person to make a judgment or express a preference concerning a health state never experienced. When patients are asked to rate their current state of health, they use subjective judgments. If others who have never experienced that health state are asked to rate that same health state externally using methods such as time trade-off, the value will vary depending on the rater's own current state of health. For example, many people who have a dramatic change in their physical health due to an accident causing paralysis shift their pre-accident ratings upward as they adjust to the change by shifting their emphasis from the body to the mind and spirit. Buchholz raises this point in his discussion of the shifting perceptions of quality of life experienced by persons faced with a life-threatening illness. We support the premise that any method of valuation of quality of life that relies solely on external judgments should be viewed with caution and not be adopted to guide treatment decisions.
2 ReferencesMarcia A. Testa, M.P.H., Ph.D.
Harvard School of Public Health, Boston, MA 02115Donald C. Simonson, M.D.
Brigham and Women's Hospital, Boston, MA 021151
Testa MA, Lenderking WR. Quality-of-life considerations in AIDS clinical trials. In: Finkelstein DM, Schoenfeld DA, eds. AIDS clinical trials. New York: Wiley-Liss, 1995:213-41.
2
Pediatric Supportive Care/Quality of Life Committee. ACTG 219 Pediatric Late Outcomes Protocol status report. Presented at the 19th AIDS Clinical Trials Group Meeting, Washington D.C., February 18–22, 1995.
- Citing Articles (3)
Citing Articles
1
Jason Q. Purnell, Barbara L. Andersen. (2009) Religious Practice and Spirituality in the Psychological Adjustment of Survivors of Breast Cancer. Counseling and Values 53:3, 165-182
CrossRef2
Eddie Moloney, Jim J. Egan. (2002) Quality of life after lung transplantation. Current Opinion in Organ Transplantation 7:3, 260-264
CrossRef3
Marcel Dijkers. (1999) MEASURING QUALITY OF LIFE. American Journal of Physical Medicine & Rehabilitation 78:3, 286-300
CrossRef
