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HRQOL research questions begin with the need for basic descriptive analysis of quality of life in
patients treated for urologic diseases.

Depiction of the fundamental elements in quality of life for these individuals requires study of
their health perceptions and how their daily activities are affected by both their general health
and their cancer. Physical and emotional well-being form the cornerstone of this approach, but
research must also extend to other issues that can affect a patient’s quality of life and
satisfaction such as eating and sleeping habits, anxiety and fatigue, depression, rapport with
the physician, presence of a spouse or partner, and social interactions. Characterization of all
domains must address not only the actual functions but also the relative importance of these
issues to patients.

Beyond simple descriptive analysis, HRQOL outcomes must be compared between patients
undergoing different modes of therapy.

General and disease-specific HRQOL must be measured to facilitate comparison with patients
treated for diabetes, heart disease, arthritis, and other common chronic conditions. Quality of
life outcomes may be correlated with medical variables such as comorbidity or
sociodemographic variables such as age, race, education, income, insurance status, geographic
region, and access to health care. In this context, HRQOL may be linked with many factors
other than the traditional medical ones.

All clinical trials and observational cohort studies in patients with benign or malignant urologic
disease should include an HRQOL component. Two cohort studies have been particularly
fruitful in prostate cancer. First, the Cancer of the Prostate Strategic Urologic Research
Endeavor (CAPSURE) is a longitudinal disease registry of more than 10,000 men with prostate
cáncer (Lubeck et al, 1996; Lubeck et al, 1997; Cooperberg et al, 2004), which has provided
valuable insights into evolving practice patterns, technology diffusion, outcomes, and severity
of disease from data collected in community settings across the United States. Second, the
Prostate Cancer Outcomes and Satisfaction with Treatment: Quality Assessment (PROST-QA) is
a consortium of nine academic centers that has tracked more than 1800 patients and spouses
for several years with a specific focus on quality of life outcomes after surgery or radiation
(Sanda et al, 2008).

Resources are scarce in any clinical trial, but clinical trials provide the best setting for
prospective outcomes measurement and contribute to the thoughtful interpretation of more
clinical endpoints (Steineck et al, 2002). Nonetheless, HRQOL data collections are labor
intensive; hence, when planning clinical trial budgets investigators must be aware that they
are expensive to include. The more instruments that are selected, the richer the potential
database, however it is important to remain parsimonious in instrument selection, choosing
only the relevant domains of HRQOL.

The ultimate goal of quality of life research is to improve medical care and assist in medical
decision-making (Table 5–5).

Individual patients who incorporate quality of life considerations into their decision equations
tend to feel better about their treatment choices, are more satisfied overall with their care,
and experience less regret (Cassileth et al, 1989). Hence patient education provides a potent
impetus for studying and reporting quality of life. With accurate measurement of quality of life
outcomes, we can better assess whether the specific and overall goals of therapy have been
met. This allows individuals and societies to balance the competing health care priorities of
optimizing survival, quality of life, and resource utilization. Furthermore, the evaluation of
patient-perceived HRQOL permits assessment of low-grade subjective morbidity that, although
not typically life-threatening, may present considerable distress for the patient. These
outcomes are often overlooked during the busy daily routine of patient care.