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1.
J Community Genet ; 14(4): 395-405, 2023 Aug.
Article in English | MEDLINE | ID: mdl-37458974

ABSTRACT

People with Huntington's disease (HD) face difficult emotional and practical challenges throughout their illness, including in the pre-symptomatic stage. There are, however, extremely limited psychosocial interventions adapted to or researched for HD. We adapted and piloted an 8-week mindfulness-based stress reduction (MBSR) program in people with pre-symptomatic HD to determine if the program (i) was feasible and acceptable to participants, (ii) resulted in increased mindfulness understanding and skills, and (iii) led to improved psychological adjustment. Quantitative measures of mindfulness, emotion regulation, mood, and quality of life were administered pre and post the MBSR program and at 3-month follow-up. Measures of mindfulness practice and session clarity were administered weekly. Qualitative participant feedback was collected with a post-program interview conducted by independent clinicians. Seven participants completed the 8-week course. The program's feasibility and acceptability was supported by excellent retention and participation rates and acceptable rates of home practice completion. In addition, qualitative feedback indicated participant satisfaction with the program structure and content. Two core mindfulness skills (observing and non-judgment) showed significant improvement from pre- to post-assessment. Participant qualitative feedback indicated increased confidence and capacity to use mindfulness techniques, particularly in emotionally challenging situations. Participant questionnaire data showed good psychological adjustment at baseline, which did not change after treatment. Psychological benefits of the program identified in qualitative data included fewer ruminations about HD, reduced isolation and stigma, and being seen by others as calmer. These findings justify expansion of the program to determine its efficacy in a larger, controlled study.

2.
J Community Genet ; 12(4): 679-684, 2021 Oct.
Article in English | MEDLINE | ID: mdl-34142345

ABSTRACT

The psychosocial sequelae of caregiving in Huntington's disease (HD) have been shown to be extensive, even in comparison with other progressive neurological disorders. Based on observed clinical need, this investigation aimed to identify psychoeducational and emotional support needs of male HD caregivers and to explore the feasibility and utility of a carer support group. Six male caregivers completed quantitative measures assessing depression, anxiety, carer burden, and carer support needs. The men participated in two education and support group sessions, four weeks apart, which were developed with consideration of male support preferences. Qualitative themes arising in these sessions were documented. Questionnaire results showed overall low levels of psychological distress and carer burden. Despite this, the group sessions facilitated disclosure of significant emotional, practical, and relationship challenges arising from HD. Further, a range of psychoeducational and emotional support needs were identified on quantitative and qualitative assessments. Participants strongly endorsed the format of the group and the benefits of participation, highlighting in particular the importance of meeting other men who understood the experience of living with a spouse with HD.

3.
Anesthesiology ; 119(3): 569-75, 2013 Sep.
Article in English | MEDLINE | ID: mdl-23598288

ABSTRACT

BACKGROUND: In an incidental finding, during a study of plasma chemistry after crystalloid infusion, participants reported subjective cognitive changes, particularly slower thinking, after saline but not Hartmann's (Ringer's lactate) solution. The authors tested the hypothesis that saline infusion would produce greater adverse cognitive changes than Plasmalyte infusion. METHODS: The authors conducted a randomized, cross-over, multiple blinded study of healthy adult volunteers. On separate days, participants received 30 ml/kg over 1 h of either 0.9% saline or Plasmalyte with the order randomly allocated. Plasma chemistry was tested on venous samples. As part of a battery of cognitive tests our primary endpoint was the reaction time index after infusion. RESULTS: The authors studied 25 participants. Plasma chloride was greater after saline than after Plasmalyte: mean difference 5.4 mM (95% CI, 4.1-6.6 mM; P < 0.001). Saline was also associated with greater metabolic acidosis: base-excess 2.5 mM more negative (95% CI, 1.9-3.0 mM more negative; P < 0.001). There was no evidence of a difference in the reaction time index between the two interventions: mean reaction time index 394 ms (SD, 72) after saline versus 385 ms (SD, 55) after Plasmalyte. Difference: saline 9 ms slower (95% CI, 30 ms slower to 12 ms faster; P = 0.39). There were minimal differences in the other cognitive and mood tests. CONCLUSIONS: Despite expected differences in plasma chemistry, the authors found that measures of cognition did not differ after infusions of Plasmalyte or saline.


Subject(s)
Cognition/drug effects , Sodium Chloride/adverse effects , Acidosis/chemically induced , Adult , Cross-Over Studies , Female , Gluconates/adverse effects , Humans , Magnesium Chloride/adverse effects , Male , Middle Aged , Potassium Chloride/adverse effects , Reaction Time/drug effects , Sodium Acetate/adverse effects
4.
Epilepsia ; 53(10): 1774-81, 2012 Oct.
Article in English | MEDLINE | ID: mdl-22967034

ABSTRACT

PURPOSE: Underdiagnosed depression and anxiety are well-recognized issues in chronic epilepsy, but the evolution of these symptoms after diagnosis is not well understood. We aimed to identify mood trajectories after a first seizure, and to examine factors impacting these trajectories. METHODS: Seventy-four patients were evaluated at 1, 3, and 12 months with (1) the Hospital Anxiety and Depression Scale, and (2) a semistructured interview assessing patients' initial psychological reaction to the seizure at 1 month (limited vs. pervasive loss of control). The SAS Institute's TRAJ data modelling procedure was employed to delineate trajectories. KEY FINDINGS: Two depression and three anxiety trajectories were identified, with significant overlap. The majority of patients (≈ 74%) followed a trajectory with low depression throughout the study, and either low or moderate anxiety. A minority followed trajectories with high depression and anxiety from diagnosis (≈ 16%). Patients with high levels of distress were adversely affected by seizure recurrence and antiepileptic drugs (AEDs), whereas those with low levels were not. Trajectories were predicted by the patient's sense of loss of control early after diagnosis and were weakly related to demographic and medical variables (age, gender, education, relationship status, psychiatric history, and prior epileptic events). SIGNIFICANCE: Methods that account for heterogeneity in patient responses are critical for developing a clinically relevant understanding of adjustment after a newly diagnosed seizure. Most patients appear to be resilient in the face of early seizures, whereas those at risk of longer-term psychological difficulties may be evident from diagnosis. Early screening for depression and anxiety is warranted.


Subject(s)
Behavioral Symptoms/etiology , Seizures/complications , Seizures/diagnosis , Adolescent , Adult , Aged , Behavioral Symptoms/diagnosis , Behavioral Symptoms/psychology , Female , Humans , Longitudinal Studies , Male , Middle Aged , Neuropsychological Tests , Predictive Value of Tests , Probability , Psychiatric Status Rating Scales , Quality of Life , Seizures/psychology , Social Behavior , Young Adult
5.
Epilepsia ; 50(5): 1012-21, 2009 May.
Article in English | MEDLINE | ID: mdl-19054415

ABSTRACT

PURPOSE: To examine the nature and determinants (biologic and psychological) of cognitive complaints in first-seizure patients. We analyzed this in the context of our previous findings that a sense of loss of control after a newly diagnosed seizure (limited or pervasive) predicts subsequent psychological adjustment trajectories. METHODS: Eighty-five consecutive First Seizure Clinic patients were assessed at 1 and 3 months. Cognitive complaints were evaluated qualitatively, with a semistructured interview, and quantitatively, with the A-B Neuropsychological Assessment Schedule (ABNAS). Objective attentional processing was assessed with reaction time tasks and the Wechsler Adult Intelligence Scale-3rd edition (WAIS-III) Processing Speed Index. Mood was assessed with the Hospital Anxiety and Depression Scale (HADS). Psychological adjustment trajectories were represented by previous classification of patients into limited and pervasive groups, as derived from semistructured interview. RESULTS: Cognitive complaints at 1 and 3 months were strongly associated with mood, and unrelated to objective attentional processing. Psychological adjustment trajectories influenced the longitudinal course of cognitive complaints, and these effects were partially mediated by mood differences between the limited and pervasive groups. The course of cognitive complaints was also altered by commencing antiepileptic drugs. Patients experiencing seizure recurrence reported greater cognitive complaints, even before their seizure recurred. Mediation analyses showed this effect was likely attributable to increased mood disturbance in the seizure recurrence group, and was unrelated to objective attentional processing. DISCUSSION: Understanding cognitive complaints in first-seizure patients requires a longitudinal perspective that takes into account the patients' changing psychological and medical contexts. Patients presenting with extensive cognitive complaints may warrant assessment for mood and adjustment issues.


Subject(s)
Adaptation, Psychological/physiology , Cognition Disorders/etiology , Cognition Disorders/psychology , Seizures/complications , Adult , Affect/physiology , Attention/physiology , Female , Humans , Interviews as Topic , Male , Middle Aged , Neuropsychological Tests , Quality of Life , Reaction Time/physiology , Young Adult
6.
Epilepsy Behav ; 10(2): 223-33, 2007 Mar.
Article in English | MEDLINE | ID: mdl-17292674

ABSTRACT

This study aimed to characterize the process of psychosocial adjustment following a newly diagnosed seizure. Eighty-five adult patients were assessed 1 and 3 months after a first seizure presentation with a purpose-developed semistructured interview, the NEWQOL, and the COPE. Among a broad range of patient concerns, psychological issues were paramount, representing a process of losing and restoring perceived control. Two psychological adjustment trajectories were identified, which hinged on the experience of a limited (n=37) or pervasive (n=48) loss of control. These adjustment trajectories were predicted by demographic and clinical factors. The pervasive group described a more extensive process of reevaluation, leading to an improved sense of self at 3 months. Pervasive loss of control, anxiety, and depression predicted subsequent seizure recurrence. Overall, a first seizure can trigger a complex adjustment process, which might require therapeutic management in some patients.


Subject(s)
Seizures/psychology , Adaptation, Psychological , Adult , Female , Humans , Interviews as Topic , Longitudinal Studies , Male , Prospective Studies , Quality of Life , Recurrence , Social Adjustment
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