STRESS AND SOCIAL SUPPORT OF PARENTS WITH AN ADULT MENTALLY RETARDED CHILD

Parent-child caregiving is the most basic caregiving situation. However, parents who continue to provide care to an adult mentally retarded child have been an unexamined group of caregivers. This study compared stress levels and social support constellations among these caregivers and two other groups of parents. The study tested two major hypotheses. Parents who were caregivers for an adult child with mental retardation were predicted to report higher stress levels and smaller social support constellations than the other groups. Two comparison groups were included in the study. One group was parents of an mentally retarded child who did not live in their household. The second comparison group contained parents who had caregiving responsibilities for non-disabled children. Data were collected in two ways. The three groups of parents (N =210) responded to a survey which contained characteristics about themselves and their household, stress and their social supports. Additionally, five caregivers of a mentally retarded adult child were interviewed in the family home. Partial support was found for both the stress and social support hypotheses. Parents who were caregivers for an adult mentally retarded child reported a number of health symptoms and depressed mood items. These caregivers also reported having the fewest number of personal hours per week. Although all three groups of parents reported equal numbers of social supports, differences were found in the roles of the members of the support system and the type of exchanges in the support systems of the three groups. Implications of the research for social work practice, policy and education are presented. Suggestions about additional research on parents of mentally retarded adults are offered

Safety, Outcomes, and T-Cell Characteristics in Patients with Relapsed or Refractory MDS or CMML Treated with Atezolizumab in Combination with Guadecitabine

Purpose: We hypothesized that resistance to hypomethylating agents(HMA)amongpatients with myelodysplastic syndrome (MDS) and chronic myelomonocytic leukemia (CMML) would be overcome by combining a programmed death-ligand 1 antibody with an HMA. Patients and Methods: We conducted a Phase I/II, multicenter clinical trial for patients with MDS not achieving an International Working Group response after at least 4 cycles of an HMA ("refractory") or progressing after a response ("relapsed") with 3+ or higher risk MDS by the revised International Prognostic Scoring System (IPSS-R) and CMML-1 or -2. Phase I consisted of a 3+3 dose-escalation design beginningwith guadecitabine at 30 mg/m2 and escalating to 60 mg/m2 Days 1 to 5 with fixed-dose atezolizumab: 840 mg intravenously Days 8 and 22 of a 28-day cycle. Primary endpoints were safety and tolerability; secondary endpoints were overall response rate (ORR) and survival. Results: Thirty-three patients, median age 73 (range 54-85), were treated. Thirty patients had MDS and 3 had CMML, with 30% relapsed and 70% refractory. No dose-limiting toxicities were observed in Phase I. There were 3 (9%) deaths in ≤ 30 days. Five patients (16%) came off study for drug-related toxicity. Immune-related adverse events (IRAE) occurred in 12 (36%) patients (4 grade 3, 3 grade 2, and 5 grade1). ORR was 33%[95% confidence interval (CI), 19%-52%] with 2 complete remission (CR), 3 hematologic improvement, 5 marrow CR, and 1 partial remission. Median overall survival was 15.1 (95% CI, 8.5-25.3) months. Conclusions: Guadecitabine with atezolizumab has modest efficacy with manageable IRAEs and typical cytopenia-related safety concerns for patients with relapsed or refractory MDS and CMML.</p