Tackling psychosocial maladjustment in Parkinson's disease patients following subthalamic deep-brain stimulation: A randomised clinical trial.

BACKGROUND: Subthalamic nucleus deep brain stimulation (STN-DBS) is an effective treatment for the motor and non-motor signs of Parkinson's disease (PD), however, psychological disorders and social maladjustment have been reported in about one third of patients after STN-DBS. We propose here a perioperative psychoeducation programme to limit such social and familial disruption. METHODS: Nineteen PD patients and carers were included in a randomised single blind study. Social adjustment scale (SAS) scores from patients and carers that received the psychoeducation programme (n = 9) were compared, both 1 and 2 years after surgery, with patients and carers with usual care (n = 10). Depression, anxiety, cognitive status, apathy, coping, parkinsonian disability, quality-of-life, carers' anxiety and burden were also analysed. RESULTS: Seventeen patients completed the study, 2 were excluded from the final analysis because of adverse events. At 1 year, 2/7 patients with psychoeducation and 8/10 with usual care had an aggravation in at least one domain of the SAS (p = .058). At 2 years, only 1 patient with psychoeducation suffered persistent aggravated social adjustment as compared to 8 patients with usual care (p = .015). At 1 year, anxiety, depression and instrumental coping ratings improved more in the psychoeducation than in the usual care group (p = .038, p = .050 and p = .050, respectively). No significant differences were found between groups for quality of life, cognitive status, apathy or motor disability. CONCLUSIONS: Our results suggest that a perioperative psychoeducation programme prevents social maladjustment in PD patients following STN-DBS and improves anxiety and depression compared to usual care. These preliminary data need to be confirmed in larger studies.

International field testing of the psychometric properties of an EORTC quality of life module for oral health: the EORTC QLQ-OH15.

PURPOSE: This international EORTC validation study (phase IV) is aimed at testing the psychometric properties of a quality of life (QoL) module related to oral health problems in cancer patients. METHODS: The phase III module comprised 17 items with four hypothesized multi-item scales and three single items. In phase IV, patients with mixed cancers, in different treatment phases from 10 countries completed the EORTC QLQ-C30, the QLQ-OH module, and a debriefing interview. The hypothesized structure was tested using combinations of classical test theory and item response theory, following EORTC guidelines. Test-retest assessments and responsiveness to change analysis (RCA) were performed after 2 weeks. RESULTS: Five hundred seventy-two patients (median age 60.3, 54 % females) were analyzed. Completion took <10 min for 84 %, 40 % expressed satisfaction that these issues were addressed. Analyses suggested a revision of the phase III hypothesized scale structure. Two items were deleted based on a high degree of item misfit, together with negative patient feedback. The remaining 15 items formed one eight-item scale named OH-QoL score, a two-item information scale, a two-item scale regarding dentures, and three single items (sticky saliva/mouth soreness/sensitivity to food/drink). Face and convergent validity and internal consistency were confirmed. Test-retest reliability (n = 60) was demonstrated as was RCA for patients undergoing chemotherapy (n = 117; p = 0.06). The resulting QLQ-OH15 discriminated between clinically distinct patient groups, e.g., low performance status vs. higher (p < 000.1), and head-and-neck cancer versus other cancers (p < 0.03). CONCLUSION: The EORTC module QLQ-OH15 is a short, well-accepted assessment tool focusing on oral problems and QoL to improve clinical management. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT01724333.

Evolution of quality of life, mental health, and coping strategies in amyotrophic lateral sclerosis: a pilot study.

BACKGROUND AND OBJECTIVES: Amyotrophic lateral sclerosis (ALS) is a fatal, neurological disease, which can potentially impact mental health as well as the adaptation process of people who are affected. Most of the results available are cross-sectional. The aim of this study was to study the evolution of coping strategies, Quality of Life (QoL), and mental health in a sample of ALS patients. METHODS: Forty-nine patients with ALS were interviewed in order to obtain their demographic and medical data. Then, each one was asked to complete a questionnaire of coping strategies (Brief COPE), mental health (GHQ-28), and QoL (SF-36) at two different moments of the disease evolution. As many patients died in the interim, only 30 completed questionnaires at T2. The Wilcoxon test was used in order to compare mean scores between T1 and T2. RESULTS: On the GHQ-28, the differences concerned two dimensions: somatic disorders (Z=-2.15, p=0.03) and anxiety sleep disorders (Z=-2.07, p=0.04). We noted that mean scores increased between T1 and T2. Regarding coping strategies, only one tendency was found on the COPE. It concerned behavioral disengagement (Z=1.84, p=0.06), which was used more at T2 than at T1. Concerning QoL, one significant difference and one tendency between T1 and T2 were found. They involved pain (Z=2.52, p=0.01) and a tendency toward emotional role functioning (Z=-1.86, p=0.06). DISCUSSION: This study, the first to evaluate psychosocial aspects of ALS over time, underlines the importance of global, multidisciplinary, and adapted care.

The EORTC QLQ-OH17: a supplementary module to the EORTC QLQ-C30 for assessment of oral health and quality of life in cancer patients.

AIMS: Assessment of oral and dental problems is seldom routine in clinical oncology, despite the potential negative impact of these problems on nutritional status, social function and quality of life (QoL). The aim was to develop a supplementary module to the European Organisation for Research and Treatment of Cancer Core Questionnaire (EORTC QLQ-C30) focusing on oral health and related QoL issues in all cancer diagnoses. METHODS: The module development followed the EORTC guidelines. Phases 1&2 were conducted in France, Germany, Greece, Netherlands, Norway and United Kingdom, while seven countries representing seven languages were included in Phase 3. RESULTS: Eighty-five QoL-items were identified from systematic literature searches. Semi-structured interviews with health-care professionals experienced in oncology and oral/dental care (n=18) and patients (n=133) resulted in a provisional module with 41 items. In phase 3 this was further tested in 178 European patients representing different phases of disease and treatment. Results from the interviews, clinical experiences and statistical analyses resulted in the EORTC QLQ-OH17. The module consists of 17 items conceptualised into four multi-item scales (pain/discomfort, xerostomia, eating, information) and three single items related to use of dentures and future worries. CONCLUSION: This study provides a useful tool intended for use in conjunction with the EORTC QLQ-C30 for assessment of oral and dental problems. The increased awareness may lead to proper interventions, thereby preventing more serious problems and negative impact on QoL. The reliability and validity, the cross-cultural applicability and the psychometric properties of the module will be tested in a larger international study.

Fear of recurrence: a case report of a woman breast cancer survivor with GAD treated successfully by CBT.

General anxiety disorder (GAD) characterized by persistent, excessive and unrealistic worry about everyday things can affect everybody, including cancer patient survivor.In this paper, we present a case report of a breast cancer survivor with GAD treated by cognitive-behavioural therapy (CBT), who was excessively worried about recurrence of the disease 2 years after the end of any treatment. Cognitive reframing, associated to behavioural exposure and relaxation, were used in order to treat this woman. We describe precisely how the therapy was conducted. Results showed a substantial improvement of the fear of recurrence which 'naturally' extended to other stressful situations not worked during the therapy. Actually, these results are encouraging since it showed that CBT can be efficient in complicated situation involving survivor of a serious disease like cancer who additionally suffers from an anxiety disorder. It also underlines how it is important to be concerned by the distress of cancer survivors.

Place of death of adolescents and young adults with cancer: first study in a French population.

OBJECTIVE: To improve the palliative care and more effectively meet the needs of young patients and their families at the end of life, the authors investigated the place of death of adolescents and young adults treated in their institution and identified some of the factors influencing the choice of place of death. METHODS: The parents and/or partners of adolescents and young adults (15 to 25 years old) who died at Institut Curie (cancer center) between 2000 and 2003 were contacted. Twenty-one families agreed to participate in the interview between October 2005 and April 2006. Analysis of the interviews comprised a descriptive part and a thematic part. RESULTS: Nineteen out of 21 (90%) families declared that they did not really choose their child's place of death due to lack of time. However, all families said that they preferred the hospital. No family attended a bereavement group after their child's death and only 3 families (14%) consulted a mental health care professional. Thematic analysis showed that representations and beliefs concerning life and death at least partly determined the family's capacity to discuss the place of death with their child. SIGNIFICANCE OF RESULTS: Although progress has been made over recent years in France, there is still considerable room for improvement of palliative care to more effectively meet the needs of young patients and their families at the end of life.

What relation is there between deep brain stimulation and coping strategies in Parkinson's disease?

We investigated the effect of the deep brain stimulation (DBS) on coping strategies while taking depression into account. Patients with Parkinson's disease (PD) were divided into three groups matched for sex, age, and disease severity: one, just before DBS, another at 12 months post DBS, and a group of patients not being considered for DBS. Each patient was asked to complete two self-reports about their coping styles: The ways of coping check list and the coping with health, injuries, and problems scale. The Montgomery and Asberg depression rating scale was assessed by a psychologist. After control for depression, significant differences were noticed concerning two coping strategies: instrumental (P < 0.01) and emotional (P < 0.05) ones, with higher instrumental coping strategies (seeking more information) for patients prior DBS and higher emotional strategies (avoidance, emotional preoccupation) for patients not being considered for surgery. These results confirmed our clinical impression that coping strategies differ as a function of the surgical status of PD patients.