Extended follow-up in 212 long-term allogeneic bone marrow transplant survivors. Issues of quality of life.

A group of 235 allogeneic marrow recipients were contacted at least one year following their BMT to obtain information on their quality of life; 212 (90%) agreed to participate in this survey. A total of 162 adults and 50 pediatric survivors were interviewed during clinic visits (5%) or over the telephone (95%). Changes in productive activity and marital status at the time of interview were studied, as well as the presence of physical symptoms and perception of a general sense of well-being. Older transplant recipients were observed to have a significantly higher incidence of chronic graft-versus-host disease, common colds, and skin changes when compared with pediatric transplant recipients (P < 0.01). Older subjects were also more likely to require any type of regular medication. Younger survivors were rated with a higher Karnofsky performance status and global subjective score. There were no significant differences between patients who received TBI as part of the conditioning regimen and those who did not, with the exception of increased cataract development in pediatric patients receiving TBI (P < 0.008). We conclude that most allogeneic marrow transplant survivors, especially those individuals of younger age at the time of their transplants, are doing well in the domains tested.

Measurement of quality of life in bone marrow transplantation survivors.

This study was designed to assess the reliability and validity of a Quality of Life (QOL) instrument on a sample of 179 allogeneic Bone Marrow Transplant (BMT) survivors. The QOL-BMT tool was developed specifically for this population and was based on the investigators' prior research and a conceptual model of Quality of Life. Patients who were at least 100 days post BMT completed the 30 item visual analogue questionnaire. The instrument measured physical symptoms (e.g., weight loss, frequent colds, skin changes, cataracts, sexual problems), psychological symptoms (e.g., worry about recurrence, adjustment to illness), social concerns (e.g., relationship adjustment, return to work), and spiritual well-being (e.g., sense of control, future goals). Psychometric analysis of the instrument included measures of reliability and validity. The study findings demonstrate the unique aspects of QOL dimensions in BMT survivors and the value of QOL assessment in clinical practice and research.

The meaning of quality of life for bone marrow transplant survivors. Part 2. Improving quality of life for bone marrow transplant survivors.

Surviving bone marrow transplant (BMT) represents a major victory against malignant disease but also creates challenges of survivorship for patients and the professionals who care for them. Part 2 of this report presents the findings of a qualitative study (N = 119) related to improving quality of life (QOL) for BMT survivors. Results are shared based on BMT survivors' perceptions of (a) what makes QOL better, (b) what makes QOL worse, and (c) what doctors or nurses could do to enhance QOL. The findings of the study have been useful in constructing a quantitative instrument to measure QOL in BMT and in understanding the conceptual basis of QOL for the BMT population. Nursing interventions can improve the QOL for the BMT patient across all phases of the transplant process and long-term issues related to survival.

The meaning of quality of life for bone marrow transplant survivors. Part 1. The impact of bone marrow transplant on quality of life.

Quality of life (QOL) is an important concept in cancer nursing and has particular significance for bone marrow transplant (BMT). BMT survivors are faced with the demands of acute transplant symptoms as well as chronic illness demands posttransplant. The purpose of this study was to explore the concept of QOL for BMT survivors and to gain understanding of nursing interventions that may improve QOL in this population. The conceptual framework for this study was derived from the model of QOL developed by Ferrell, Grant, and Padilla (1989) that depicts the QOL domains of physical well-being, psychological well-being, social concerns, and spiritual well-being. This qualitative study consisted of a one-time interview of 119 BMT survivors using six open-ended questions. The items were based on previous research of the authors and content validity was established by a panel of BMT experts. Content analysis was performed on verbatim written responses to six questions regarding BMT and QOL. Part one of this two-part report provides analysis based on the questions regarding the meaning of QOL to BMT survivors and the impact of BMT on QOL.