Rogers, Julie M.G.

Abstract Down syndrome (DS) research is advancing rapidly, yet efforts have raised ethical questions. This mixed methods study describes views of people with DS (self-advocates) and their parents regarding medical interventions for DS. Responses from 35/171 (20.5%) self-advocates and 430/867 (49.6%) parents showed the majority of self-advocates were glad they have DS (27/35; 77.1%) and liked who they are (33/35; 94.3%), but did want to learn faster (23/35; 65.7%). Parents much more commonly agreed with a willingness to give medications to prevent Alzheimer's disease (427/429; 99.5%) or blood cancer (428/430; 99.5%) as compared with a medicine to cure DS (225/425; 52.9%). Qualitative comments intertwined DS with identity, yet indicated desire for improved quality of life and opportunities. Responses decoupled DS itself from the complications of DS, with treatment of complications being more acceptable.

Introduction. Some patients with head and neck cancers have pain refractory to aggressive multimodal therapies. Herein, we report the use of an intrathecal targeted drug delivery (TDD) system catheter tip placed at C1 for the treatment of recalcitrant oropharyngeal cancer pain. Case Report. A patient with recurrent metastatic squamous cell tongue cancer reported severe pain not controlled despite high-dose opioids and nonopioid adjuvants. It was elected to proceed with an intrathecal TDD system with the catheter tip placed at the C1 level. After pump placement, we were able to decrease her daily oral morphine equivalents (OME) from nearly 1000 mg to 300 mg over the course of two months while titrating her TDD from 0.3 mg/day to 0.7 mg/day of intrathecal hydromorphone. Unfortunately, her improvement was limited secondary to aggressive cancer-directed treatments likely contributing to device infection and explant. Conclusions. In this patient, high cervical placement of an intrathecal TDD catheter was associated with a decrease in OME. While used in clinical practice on occasion, the use of high cervical TDD placement such as this implantable C1 intrathecal TDD system for cancer-associated pain is underreported in the literature. Further studies on this intervention within this challenging population are warranted.