Registries, large databases of patient information collected in a systematic, standardized fashion, most often focus on biologic measures, such as pathology, radiology, and laboratory results, to track incidence and prevalence of disease as well as causative factors. They also provide data for large-scale observations and measurement of outcomes of prevention, treatment, and measures of quality of care. Currently, the National Program of Cancer Registries collects data on cancer cases occurring among 96% of the US population.

	A nurse-initiated psychosocial cancer registry can provide insight about quality of life (QOL) in patients with cancer.

 Evidence about QOL, as perceived by the patient, is a concern of all clinicians but is of particular importance to the bedside nurse. There has been a great deal of study of QOL of cancer patients; however, most of these reports focus on narrow or limited samples and typically one specific cancer type. Having access to a registry that enrolled patients with diverse cancer types and collected QOL data could be very useful to practicing nurses.

	Before deciding to use a registry, it is important to know the characteristics of the patients enrolled. Data for our registry were collected in an outpatient clinic at an NCI-designed Comprehensive Cancer Center and included all cancer diagnoses and stages. Among the inclusion criteria were >18 years of age, ability to comprehend the English language, having a new diagnosis of cancer, and receiving ongoing care at the cancer center. Exclusion criteria were cognitive impairment or immediate referral for a bone marrow/ stem cell transplant, because much of this type of treatment is conducted in the inpatient setting.

	Demographic and clinical data were gathered at enrollment, and QOL was measured using several questionnaires administered at enrollment, 3 months, and 9 months.

	Patient demographic data included education level, employment status, and income. Cancer demographics were gathered for tumor type and staging and for the patient’s history of cancer and ECOG performance status.

	The project was approved by the hospital’s Institutional Review Board. Of the 410 participants in this registry, the majority were married (64%), Caucasian (76%), and female (57%); the mean age was 59.6 (range, 18-90 years).

	Several instruments were used in this registry to capture data about various aspects of QOL, including mood state, functional status, and spiritual well-being (

). Measuring several dimensions of QOL is important in designing a registry so that it can serve a variety of purposes. For example, when planning to initiate or improve supportive care services by increasing access to palliative care or changing social services staffing,it would be useful to know if services should be targeted to patients with particular demographic or clinical characteristics.

			Table 1.Second-Generation Proteasome Inhibitors

						Eastern Cooperative Oncology Group (ECOG)

						Functional Assessment of Cancer Therapy-General Scale (FACT-G)

						Functional Assessment of Chronic Illness Therapy- Spiritual Well-Being Scale (FACIT-Sp)

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Registries, large databases of patient information collected in a systematic, standardized fashion, most often focus on biologic measures, such as pathology, radiology, and laboratory results, to track incidence and prevalence of disease as well as causative factors.

The Benefits for Nurses of Using Psychosocial Cancer Registry Data

Barbara Daly, PhD, RN, Professor, Frances Payne Bolton School of Nursing, Case Western Reserve University, discusses the feasibility of establishing a psychosocial data registry for patients with cancer.

For nurses, the quality of life and psychosocial challenges of a cancer diagnosis and treatment are particularly important. Preliminarily, Daly notes being surprising that many cancer centers have tumor registries that record histologic data but none recorded detailed information on quality of life. To examine this further, a study on the feasibility of setting up a psychosocial registry was undertaken.

The study found that a majority of patients with newly diagnosed cancer were willing to participate in a registry. Additionally, many of the patients agreed to being contacted in the future for additional studies. The registry gathered data on psychological, social, emotional, and spiritual aspects of quality of life for both patients and family caregivers. Daly believes this provides reliable data for future trials, with the potential of establishing a national psychosocial data registry.

Barbara Daly, PhD, RN, from the Case Western Reserve University, discusses the feasibility of establishing a psychosocial data registry for patients with cancer. 

Barbara Daly, PhD, RN

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The Benefits for Nurses of Using Psychosocial Cancer Registry Data

Barbara Daly on Establishing a Psychosocial Data Registry