Health-related quality of life predicts length of hospital stay and survival rates for pediatric patients receiving allogeneic hematopoietic cell transplantation.

PURPOSE: We examined the association between health-related quality of life (HRQoL) of pediatric patients during hospitalization for allogeneic hematopoietic cell transplantation (HCT) and length of hospital stay, and 1-year survival. METHODS: Primary family caregivers were proxy-assessors for the Pediatric Quality of Life (PedsQL) Stem Cell Transplant Module at three time points: 5-days pre-HCT (T0); 14-days post-HCT (engraftment, T1); and 1-week before hospital discharge (T2). Cox regression analyses determined predictors of the overall 1-year survival after allogeneic HCT. RESULTS: Thirty-nine eligible caregivers completed all assessments. The mean age of the pediatric patients was 9.07 years (SD = 5.2). PedsQL Stem Cell Transplant Module scores decreased from 71.33 (SD = 13.26) at T0 to 55.41(SD = 13.05) at T1 (p < 0.001) and increased to 68.46 (SD = 13.97) at T2 (p < 0.001). There was no significant difference between scores at T0 and T2. Longer length of hospital stay was associated with children who were younger and had greater relative changes in scores on the caregiver-proxy PedsQL Stem Cell Transplant Module from T0 to T1. PedsQL Stem Cell Transplant Module scores ≥ 58.07 at T2 were associated with higher 1-year survival rates (Hazard Ratio = 0.12, 95% Confidence Interval = 0.02-0.78; p = 0.03). CONCLUSION: Our findings suggest that assessment of HRQoL during early HCT can add prognostic value beyond demographic and HCT factors. Understanding the HRQoL status during hospitalization for HCT could help identify pediatric patients with low prospects of 1-year survival in order to provide support interventions to improve HRQoL and survival rates.

Clinical spectrum and treatment outcome of retinoblastoma with Group D and E diseases: A single institution retrospective review.

The purpose of our study was to evaluate the ocular survival and event-free survival after multimodal therapy for group D and E of retinoblastoma (RB). Enucleation of group D and E is controversial as the risks of chemotherapy must be weighed against the potential for vision.A 10-year retrospective study from one center of 86 patients with advanced intraocular disease defined as International Classification Retinoblastoma (ICRB) group "D" or "E." Cases with visible extraocular extension at diagnosis were excluded. Ocular survival and patient survival were assessed. Indirect ophthalmoscopy at examination under anesthesia to visualize the tumor was used to evaluate clinical response.The median onset age in 86 patients with group D or E eye was 16 months (1-167 months). There were 29 (34%) bilateral cases. Leukocoria was the most common presentation sign (61%). Chemoreduction was primarily used in the treatment of intraocular RB. Selective ophthalmic arterial injection (SOAI) was applied as a component of multimodal therapy in 34 of the 86 cases. The globe preservation rate in patients with group D or E eyes was 19%. Using chemoreduction for advanced eyes, more eyes are being preserved which enables 70% 5-year ocular survival in patients with group D eyes.In triaging appropriate patients, multidisciplinary strategy can reduce tumor size with chemoreduction and consolidate the regressed tumor with local ophthalmic therapy to ensure globe salvage.

Effectiveness of a Three-Stage Intervention in Reducing Caregiver Distress During Pediatric Hematopoietic Stem Cell Transplantation: A Randomized Controlled Trial.

More than one fourth of primary caregivers report clinically significant distress during the hematopoietic stem cell transplantation (HSCT) process. Providing early support to primary caregivers could reduce caregiver distress and improve the quality of life. This study examined the effects of a three-stage caregiver support intervention designed to reduce caregiver distress and improve quality of life during pediatric HSCT hospitalization. A two-group comparative study was conducted with repeated measures. Participants were randomly assigned to an intervention group or a control group. The intervention group received the support intervention 5 days before the transplant, 14 days after transplant, and 1 week before hospital discharge. The control group received standard support provided in the hospital ward. Measures were obtained at all three time points from self-report questionnaires, which were related to anxiety, depression, perceived stress, and quality of life. Findings indicated that primary caregivers in the intervention group (n = 22) reported significantly lower levels of perceived stress and higher levels of quality of life than the control group (n = 23) at 14 days after transplant. In the intervention group, caregiver distress significantly decreased from pretransplant through 14 days after transplant, while over the same period caregiver quality of life significantly increased. The intervention effectively changed the trend of distress and quality of life for caregivers of children during the process of HSCT and hospitalization. The findings of this study suggest that it is important to provide early targeted interventions at critical junctures for caregivers at risk of adverse outcomes.

Exploring the concerns and experiences of parents of children scheduled to receive haematopoietic stem cell transplant.

AIMS: To explore the concerns and experiences of parents of children scheduled to receive allogeneic haematopoietic stem cell transplantation. DESIGN: A qualitative secondary analysis of interview data from an intervention study. METHODS: A total of 28 parents (4 fathers and 24 mothers) were recruited from a children's hospital, which performs approximately one-third of all paediatric haematopoietic stem cell transplantation cases in Taiwan. Data were collected between September 2015-August 2018 by one researcher with face-to-face interviews, which were tape-recorded and transcribed verbatim. The data were analysed using inductive content analysis to extract the main themes. RESULTS: Five themes describing parental concerns prior to paediatric haematopoietic stem cell transplantation were identified: the child became their first priority, seeking solutions, an interweaving of hope and uncertainty, grateful for the chance of a cure and the long road to recovery. CONCLUSION: Understanding the concerns and experiences of our participants as they navigated the pre-transplantation period could reduce parents' uncertainty and improve the care of their child. IMPACT: These experiences provide information that could be used by healthcare professionals to develop support interventions and strategies tailored to the individual needs of each parent, which could prepare parents for their child's haematopoietic stem cell transplantation.