Centralized patient-reported outcome data collection in transplantation is feasible and clinically meaningful

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Abstract

<div class="section"> <a class="named-anchor" id="S1">  </a> <h5 class="section-title" id="d3771671e246">Background</h5> <p id="P1">Allogeneic hematopoietic cell transplant (HCT) cures many patients, but often with the risk of late effects and impaired quality of life. The value of quantifying patient-reported outcomes (PRO) is increasingly recognized, but routine collection of PROs is uncommon. We evaluated feasibility of prospective PRO collection by an outcomes registry, at multiple time points, in unselected HCT patients transplanted in centers contributing clinical data to the CIBMTR, and correlated those with clinical and demographic data. </p> </div><div class="section"> <a class="named-anchor" id="S2">  </a> <h5 class="section-title" id="d3771671e251">Methods</h5> <p id="P2">FACT-BMT, SF-36 and PedsQL measures were administered pre-HCT, day 100, 6 and 12 months. Patients were recruited by the transplant center, but post-transplant PRO collection was managed centrally by CIBMTR. </p> </div><div class="section"> <a class="named-anchor" id="S3">  </a> <h5 class="section-title" id="d3771671e256">Results</h5> <p id="P3">Of 580 eligible patients, 390 (67%) enrolled. Feasibility was shown by high time-specific retention rates (1-year: 176/238, 74%) and participant satisfaction. Factors associated with higher response rate were age >50 (OR 1.58, 95% CI 1.03-2.41, p=0.0355), Caucasian race (OR 4.61, 95% CI 2.66-7.99, p<0.0001) and being married (OR 2.28, 95% CI 1.42-3.65, p=0.0006) in adults; and higher family income in children (OR 4.99, 95% CI 2.12-11.75, p=0.0002). Importantly, pre-HCT PRO scores independently predicted survival after adjusting for patient-, disease- and transplant-related factors. Adjusted probabilities of 1-year survival by increasing quartiles of pre-HCT FACT-BMT and physical component score of SF-36 scores were 56%, 67%, 75%, 76% and 58%, 72%, 62%, 82%, respectively. </p> </div><div class="section"> <a class="named-anchor" id="S4">  </a> <h5 class="section-title" id="d3771671e261">Conclusions</h5> <p id="P4">A hybrid model of local consent for centralized PRO collection is feasible, and pre-transplant PROs provide critical prognostic information for HCT outcomes. </p> </div>

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Quality of life measurement in bone marrow transplantation: development of the Functional Assessment of Cancer Therapy-Bone Marrow Transplant (FACT-BMT) scale.

Emer Brady, L Craven, D Cella … (1997)

We developed a 12-item bone marrow transplant subscale (BMTS) for the general Functional Assessment of Cancer Therapy (FACT) measure. The subscale combined with the FACT, (FACT-BMT) is a 47-item, valid and reliable measure of five dimensions of quality of life in bone marrow transplant patients. The three-step validation process involved the generation and selection of BMT-specific items and the testing of the overall measure. Items were selected from a list produced by seven oncology experts and 15 patients and were designed to assess content not represented in the general FACT items. A total of 182 patients completed the FACT-BMT at baseline, prior to BMT. An analysis measuring sensitivity to change was performed with 74 patients after transplantation and 60 patients over the three time-points of baseline, hospital discharge and 100 days. The FACT-BMT and all subscales were correlated, sensitivity to change was measured, and the internal consistency for each scale was calculated. Coefficients of reliability and validity ranged from 0.86 to 0.89 for the entire FACT-BMT and 0.54 to 0.63 for the BMTS. The BMTS was able to discriminate patients on the basis of performance status rating and also demonstrated sensitivity to change over time. The FACT-BMT has good psychometric properties for use in assessing quality of life in bone marrow transplant patients. The addition of the bone marrow transplant subscale to the general FACT measure makes it an excellent choice for use in BMT clinical trials.

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Quality of life after allogeneic hematopoietic cell transplantation.

Joseph Pidala, Heather Jim, Claudio Anasetti (2009)

High-dose therapy with allogeneic hematopoietic cell transplantation (HCT) offers effective control and potential cure of hematopoietic malignancies, but with the cost of associated morbidity that includes adverse effects on quality of life (QOL). A growing body of literature has characterized this impact. Longitudinal studies suggest early moderate impairments that largely return to pretransplantation levels by day 100; the majority of studies suggest that greater than 60% of patients report good to excellent QOL in years 1 to 4 after HCT. Comparisons of allogeneic HCT with autologous HCT and standard-dose chemotherapy suggest impairments in QOL and a different trajectory of recovery in allogeneic HCT, but these conclusions are limited by confounding variables. Cross-sectional studies suggest larger and more persistent decrements in QOL in comparison with matched noncancer controls and population normative data. Acute and chronic graft-versus-host disease (GVHD) are significant threats to QOL. Behavioral interventions show promise to maintain or improve quality of life after allogeneic HCT. The review concludes with recommendations to investigators and clinicians as the state of this research advances.

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Physical, psychological, and social sequelae following hematopoietic stem cell transplantation: a review of the literature.

Jack Burkhalter, Katherine N. DuHamel, Catherine Mosher … (2009)

This article reviews recent literature on adults' quality of life following hematopoietic stem cell transplantation (HSCT). We identified 22 prospective reports with at least 20 participants at baseline through a search of databases (Medline and PsycInfo) and handsearching of articles published from 2002 to October 2007. If longitudinal data were not available or were scarce for a particular topic or time point, cross-sectional studies were reviewed. Although physical, psychological, and social aspects of quality of life tend to improve during the years following transplantation, a significant proportion of HSCT survivors experience persistent anxiety and depressive symptoms, fatigue, sexual dysfunction, and fertility concerns. Despite ongoing treatment side effects, the majority of HSCT survivors resume their work, school, or household activities. We conclude that theory-driven research with larger samples is needed to identify subgroups of HSCT survivors with adjustment difficulties. Such research would examine survivors' evolving standards and definitions of quality of life to improve the accuracy and meaningfulness of assessment and incorporate biological, psychological, and contextual factors that may contribute to positive adjustment. (c) 2008 John Wiley & Sons, Ltd.