Quality of life and informational needs for allogeneic hematopoietic stem cell transplant among patients and their caregivers visiting long-term follow-up clinic.

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.

Comparison of child and family reports of health-related quality of life in pediatric acute lymphoblastic leukemia patients after induction therapy.

BACKGROUND: This study aims at determining the health-related quality of life (HRQOL) of children with acute lymphoblastic leukemia (ALL) after the induction therapy, assessing the agreement between child self-reports and family proxy-reports HRQOL, and determining the factors related to this agreement, especially child age, family attendance, and children's social relationships beyond the family. METHODS: We analyzed questionnaire data (2012-2017) from the Japanese Pediatric Leukemia/Lymphoma Study Group's clinical study (ALL-B12). Participants were children with B-cell precursor ALL aged 5-18 and their family members, who mostly took care of the child during hospitalization. Participants answered the Pediatric Quality of Life Inventory™ (PedsQL™) Generic Core Scales (PedsQL-G), and Cancer Module (PedsQL-C) to measure pediatric HRQOL. We calculated the differences between child self-reported and family proxy-reported subscale scores along with intraclass correlation coefficients (ICC). We conducted multiple regression analyses according to all participant pairs and age groups (young children, school age, and adolescents), with ICCs for all PedsQL-G subscales (ICC-G) and all PedsQL-C subscales (ICC-C) as the outcome variables. RESULTS: Five hundred twenty-two pairs of children and their families were analyzed. We observed a moderate level of agreement on most PedsQL subscales between child self-reports and family proxy-reports; however, worry had the weakest agreement for all PedsQL subscales (ICC = .32, 95% confidence interval = .24-.40). The agreement of ICC-C was positively related to family attendance in the hospitalization, only for the young children group (B = .185, p = .003). CONCLUSIONS: We observed some differences between child self-reports and family proxy-reports of HRQOL of children with ALL. Both child self-reports and family proxy-reports captured HRQOL in the induction therapy. We suggest that attending to young children's hospitalization affects the level of agreement between reports on their HRQOL.

Predictors of parental distress during acute phase of pediatric hematopoietic stem cell transplantation in Japan: A multicenter prospective study.

Objective: The purposes of this study were (1) to describe the levels of anxiety and depressive symptoms in parents of children undergoing hematopoietic stem cell transplantation (HSCT) before (Time 1 [T1]) and one month after transplantation (Time 2 [T2]), and (2) to identify the pre-HSCT factors that predict anxiety and depressive symptoms in fathers and mothers one month after transplantation. Methods: A prospective quantitative study was conducted at four children's hospitals between June 2015 and September 2016 using self-administered questionnaires and medical records. Parents from 23 families, including 19 fathers and 23 mothers, completed the Hospital Anxiety and Depression Scale (cutoff score: 8) and provided information regarding their stress appraisal, coping strategies, family functioning, demographic characteristics, and children's health-related quality of life. Hierarchical multiple regression analysis was performed to identify the variables that predicted T2 paternal and maternal anxiety and depressive symptoms. Results: Among the parents, 15 fathers (79%) and 11 mothers (48%) reported anxiety symptoms, and 13 fathers (68%) and 9 mothers (39%) reported depressive symptoms above the cutoff level for clinical relevance at T1. Similarly, 11 fathers (58%) and 6 mothers (26%) reported anxiety symptoms, and 10 fathers (53%) and 9 mothers (39%) reported depressive symptoms above the cutoff level at T2. Overall, parents' anxiety and depressive symptoms did not differ significantly between T1 and T2. For fathers, both T1 depressive symptoms and the understanding of their children's medical situation through communication with other parents and consultation with medical staff predicted T2 paternal depressive symptoms. For mothers, T1 maternal anxiety symptoms and marital satisfaction predicted T2 anxiety symptoms. Conclusions: The medical staff should understand that parents of children undergoing HSCT experience considerable psychological distress throughout the treatment process, and therefore, they should adopt unique approaches to reduce such distress.