Conditional and unconditional estimation of multidimensional quality of life after hematopoietic stem cell transplantation: a longitudinal follow-up of 415 patients.

Emerging literature suggests that quality of life (QOL) after bone marrow transplantation is relatively good but is accompanied in some patients by a variety of residual difficulties. The studies supporting this finding, however, have been somewhat limited in scale, scope, design, and analysis. We comprehensively measured changes in multidimensional QOL in a 4-year longitudinal follow-up of 415 adult patients who received hematopoietic stem cell transplants at Fred Hutchinson Cancer Research Center. Questionnaire packets containing 271 items were mailed annually posttransplantation to patients' homes. Standard methods of analysis yielded conditional estimates depending on compliance and survival, whereas new, likelihood-based methods generated unconditional estimates applicable to the full intent-to-treat population. Typical QOL levels generally remained high over the entire study period. Most QOL functioning significantly improved over 4 years, with the remainder showing no important decrement. Although isolated problem areas, such as sexual dissatisfaction, did emerge, the level of dysfunction for most physical and psychological scales remained below 30% of scale maxima. Broadly similar results were obtained for conditional estimation, which may contain an optimistic bias, and for unconditional estimation, which largely avoids the bias. Because concurrence was obtained between the 2 types of estimation, we conclude that most patients really do experience good levels of QOL in the 4 years after transplantation. Although some problems can be anticipated, typical patients can look forward to a QOL after transplantation that is broadly comparable to that of the normal population.

Web site design and development issues: the Washington State Breast and Cervical Health Program Web Site Demonstration Project.

PURPOSE/OBJECTIVES: To explore the development of a customized Web site to assist Breast and Cervical Health Program (BCHP) outreach staff in a community screening program and to evaluate the Internet knowledge and access issues and barriers of outreach staff during a two-year period using the Web site. DESIGN: Knowledge, access issues and barriers, and descriptive questionnaires. SETTINGS: Comprehensive cancer center in Seattle, WA, workshops, and presentations around the state. SAMPLE: BCHP outreach workers, screening coordinators, and almost exclusively public health nurses from regional health districts and program-contracted clinics. METHOD: Web site development was based on continuous input from sample. Detailed descriptions of computer and Internet resources and opinions about the use and usefulness of the BCHP Web site came from a 1996 evaluation and 1998 follow-up conducted using mailed and online Web questionnaires. "Hits" to the Web site were monitored monthly. MAIN RESEARCH VARIABLES: Computer and Internet resources were used along with monthly Web site traffic and opinions about the use and usefulness of the BCHP Web site in the outreach program. FINDINGS: Use of the BCHP Web site has risen steadily over two years to reach a stable plateau. User evaluations show a marked increase in the adoption of the Internet as a working tool. Users believe the Internet is becoming increasingly important to their work. More training and familiarization with the Web is needed. CONCLUSIONS: The Web is an efficient medium for improving communication and providing easy access to resources within the BCHP program. IMPLICATIONS FOR NURSING PRACTICE: Public health programs with meager resources can benefit from the relatively inexpensive use of customized and versatile Web sites.

Physician participation in research surveys. A randomized study of inducements to return mailed research questionnaires.

The authors randomly selected 400 physicians from a population of 1,545 practicing physicians providing follow-up care to patients who received bone marrow or blood stem cell transplants at the Fred Hutchinson Cancer Research Center to determine interest in receiving Internet-based transplant information. In a two-factor completely randomized factorial design, the 400 physicians were assigned to receive mailed surveys with either no compensation or a $5 check and either no follow-up call or a follow-up call 3 weeks after mailing. Overall, 51.5% of the physicians returned the mailed surveys. Comparison of logit models showed that inclusion of a $5 check in the mailer significantly (p = .016) increased the probability of returning the surveys (57.5% vs. 45.5%). In contrast, the telephone follow-up had no overall effect. The authors concluded a modest financial reward can significantly improve physician response rates to research surveys but a telephone follow-up may be inefficient and even ineffective.

Quality of life of 125 adults surviving 6-18 years after bone marrow transplantation.

BACKGROUND: Recent studies examining the medical and psychosocial sequelae of bone marrow transplantation have reported most survivors do relatively well while a smaller group continues to experience less than optimal quality of life (QOL). Many of these studies are limited by small sample sizes, limited scope, and focus on a narrow (1-4 year) window of survival. METHODS: The descriptive survey examined the QOL, late medical complications, psychological distress, demands of long-term recovery, and health perceptions of 125 adults surviving 6-18 (mean 10) years after marrow transplantation. Seven wide-ranging tests covering 271 items were completed on average in 90 min. Two tests were developed by the authors specifically for assessing QOL in this population. RESULTS: 74% of long-term survivors of bone marrow transplantation reported their current QOL was the same or better than before transplantation, 80% rated their current health status and QOL as good to excellent, and 88% said the benefits of transplantation outweighed the side effects. Ten years or more post-transplantation, long-term survivors continued to experience a moderate incidence of lingering complications and demands, including emotional and sexual dysfunction, fatigue, eye problems, sleep disturbance, general pain and cognitive dysfunction. However, the severity or degree of distress attributed to those complications was, for most survivors, consistently low. Nearly all were back to work or school. Only 5% rated both their QOL and health status as poor. Long-term survivors demonstrated good mood and low psychological distress compared to cancer and population norms, and had the same perceptions as the general population of their current health and expectation of future health. Demands attributed to long-term survival appeared to impose little hardship. The most frequently cited demand of recovery was the perceived lack of social support as time went on. CONCLUSIONS: Almost all long-term survivors were leading full and meaningful lives. Persistent complications were, on the whole, dismissed as relatively trivial and the overwhelming majority viewed themselves as cured and well.

Samarium-153-EDTMP in bone metastases of hormone refractory prostate carcinoma: a phase I/II trial.

Samarium-153-ethylenediaminetetramethylene phosphoric acid (EDTMP), a bone-seeking radiopharmaceutical, was given to prostate cancer patients in a dose escalation protocol for pain palliation to determine the maximally tolerated dose. Fifty-two patients with hormone refractory prostate cancer with bony metastases were treated with doses beginning at 0.5 mCi/kg (18.5 MBq/kg), escalating in 0.5-mCi (18.5 MBq) increments to 3.0 mCi/kg (111 MBq/kg). Pain response after treatment was assessed as well as hematologic and serum chemistry parameters. Pain palliation with a mean duration of 2.6 mo was present in 74% of the patients. Toxicity was exclusively hematologic at the highest dose levels. No infectious or bleeding complications occurred, with 45 of the 52 (86%) patients demonstrating complete hematologic recovery. Patients receiving higher doses had significantly greater reductions in serum prostate specific antigen and serum prostatic acid phosphatase levels. The patients receiving greater doses also showed a trend toward improved survival.

Distressing near-death experiences.

Most reported near-death experiences include profound feelings of peace, joy, and cosmic unity. Less familiar are the reports following close brushes with death of experiences that are partially or entirely unpleasant, frightening, or frankly hellish. While little is known about the antecedents or aftereffects of these distressing experiences, there appear to be three distinct types, involving (1) phenomenology similar to peaceful near-death experiences but interpreted as unpleasant, (2) a sense of nonexistence or eternal void, or (3) graphic hellish landscapes and entities. While the first type may eventually convert to a typical peaceful experience, the relationship of all three types to prototypical near-death experiences merits further study. The effect of the distressing experience in the lives of individuals deserves exploration, as the psychological impact may be profound and long-lasting.