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Objectives: Psychosocial stressors faced by patients with fragile X-associated tremor/ataxia syndrome (FXTAS) and their caregivers have not been systematically explored. FXTAS is a neurodegenerative disease occurring in approximately 45% of elderly male carriers and 8-16% of female carriers of the fragile X mental retardation one premutation. This study investigated the subjective needs of patients with FXTAS and their family caregivers, by utilizing Q-sort methodology., Method: Patients with FXTAS and their caregivers seen during January 2005 to June 2007 participated. The Q-sort was composed of 17 (eight formal and nine informal) items, designed to explore emotional, informational, and instrumental needs of patients with FXTAS and their caregivers. Item scores were generated from 1 = least important to 7 = most important. Analysis included descriptive statistics for all the demographic and outcome variables. Generalized estimating equations were used to identify which of the need domains were perceived as most important by the participants., Results: A total of 24 patients (79% men, mean age 65.6 ± 6.4 years) with FXTAS and 18 caregivers (11% men, mean age 63.6 ± 6.2 years) completed the Q-sort. Both patients and caregivers rated informational needs as most important, followed by emotional and, finally, by instrumental needs. Participants lacked many important resources, in particular those addressing instrumental needs., Conclusion: Providers should be educated and able to provide timely information and referrals to formal services, as well as to informal resources, including the National Fragile X Foundation online support network (www.fragilex.org).

The effectiveness of different pain-distraction tasks was compared as a function of level of hypnotizability, using the cold-pressor pain-testing procedure. Selected high, medium, or low hypnotizable participants first underwent a 1-minute baseline immersion of a hand in ice water, with periodic pain ratings. Independent groups were then given 4-minute test immersions under one of five conditions. Analgesia suggestion and guided imagery were conceived to be internal distractors, whereas word memory and pursuit-rotor tasks were external distractors. Placebo-control groups were given permission to let their minds wander. All four experimental treatments reduced pain significantly for highly hypnotizable participants, compared to the control group, whereas none of the experimental treatments were effective for low hypnotizables. The different treatment instructions did not produce different preimmersion anxiety state ratings, so the treatment effects on pain ratings could not be explained in terms of their effects on anxiety. It appears that high hypnotizables are more effective than low hypnotizables at diverting attention to control pain, regardless of whether internal or external distractor tasks are used. Treatment effects on pain ratings did not change between 1 and 4 minutes of test immersion.