Congress Abstracts 2006

58

QUALITY OF LIFE IN PATIENTS WITH MDS: IMPLICATIONS FOR NURSING. Mary Thomas, RN, MS, AOCN^®, VA Palo Alto Health Care System, Palo Alto, CA; and Kathy Heptinstall, RN, BSN, Myelodysplastic Syndromes Foundation, Crosswicks, NJ.

Quality of life (QOL) is an important concept to oncology nurses. Yet little is known about the impact of specific illnesses, such as Myelodysplastic Syndromes (MDS), on QOL from the patient's perspective.

The purpose of this study was to explore the impact of MDS on patients' QOL. A secondary aim was to identify the impact of nursing on patients' QOL.

QOL was conceptualized as a multi-dimensional construct, based on the works of Ferrell and Cella, and included physical, functional, emotional, social and spiritual domains.

Five focus groups were convened at different geographic locations throughout the United States; 70 MDS patients attended (89% actively participated). While the discussions varied, core questions were asked at each session. Sessions were audiotaped and professionally transcribed. Transcripts were coded and emergent themes identified using thematic analysis methods (Burnard, 1991); demographic variables were analyzed with descriptive statistics.

The sample was 93% Caucasian, 51% male, and elderly (mean age 69 + 9 years). Median time since diagnosis was 26 months. Most patients were receiving treatment, commonly transfusions or growth factors. While MDS was described as causing a substantial impact on one's functional well-being, the emotional impact was often viewed as more problematic, and included reactions of shock, anger, depression, and anxiety. Uncertainty was a significant issue. Patients poignantly described the difficulties encountered in their relationships with physicians. The need for obtaining accurate, relevant information related to MDS and treatment was described as paramount and difficult to fulfill.

Nurses were described as pleasant and encouraging. However, nursing interventions were typically limited to administering transfusions and medication. With few exceptions, patients reported receiving little information from nurses; in fact, some patients described the need to educate the nurse regarding MDS. However when nurses did provide information and counseling, its impact was positive and profound.

Data from this study suggest that MDS has a substantial, often negative impact on patients' lives. Nurses should be cognizant of this impact and direct their attention at providing more comprehensive education and support for these patients throughout the illness trajectory. In so doing, the adverse impact of MDS on patients' QOL may be diminished.