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Original Article
Quality of life and informational needs for allogeneic hematopoietic stem cell transplant among patients and their caregivers visiting long-term follow-up clinic
Shohei Nakajima1,2,3, Kiyoko Kamibeppu1,2,4

1Department of Family Nursing, The University of Tokyo, Japan

2Global Nursing Research Center, The University of Tokyo, Japan

3Department of Nursing, The University of Tokyo Hospital, Japan

4QOL Research Center for Children and Family, Japan

Keywords
dyadic data analysis, family caregivers, hematology, psycho-oncology, stem cell transplant
Submitted:June 2, 2021
Accepted:November 2, 2021
Published online:March 25, 2022

Abstract

Purpose: To examine the relationship between health-related quality of life (HRQOL) and fulfillment of informational needs among patients for allogeneic hematopoietic stem cell transplant (HSCT) and caregivers who visit long-term follow-up (LTFU) clinics within 1.5 years of post-HSCT.

Methods: We conducted a cross-sectional survey at two university hospitals in Japan between May and December 2018 using self-administered questionnaires and medical records. Based on previous research and patient interviews, informational needs of patients and caregivers were categorized into general information, post-discharge treatments, side effects and complications, self-care, psychosocial problems, and social resources. The HRQOL of patients and caregivers was measured using the Japanese Functional Assessment of Cancer Therapy-Bone Marrow Transplant (for patients) and Caregiver Quality of Life Index-Cancer (for caregivers). In addition, the pooled-regression actor-partner interdependence model approach was employed to analyze the relationships using R ver.3.6.0.

Results: A total of 16 patients and 14 caregivers were analyzed. The mean total score of the FACT-BMT was 91.0, and the mean total score of the Caregiver Quality of Life Index-Cancer was 88.2. For both patients and caregivers, fulfillment of informational needs regarding side effects and complications (estimates = 0.55, t (16) = 4.88, P < 0.001) and self-care (estimates = 0.73, t (13) = 5.02, P < 0.001) exerted actor effects on their HRQOL, whereas fulfillment of informational needs regarding psychosocial problems (estimates = 0.35, t (13) = 2.90, P = 0.012) exerted a partner effect on the mutual HRQOL.

Conclusions: Multidimensional physio-psychosocial approaches toward patients and their caregivers are important to enhance their HRQOL during the acute phase after HSCT. Detailed overviews of and methods to cope with patients’ psychosocial issues should be provided before discharge, especially for caregivers unable to visit the LTFU clinics.

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Online ISSN:2432-7026