Brian E. McGuire

The effect of pain on cognitive function: a review of clinical and preclinical research.

Cognitive impairment is commonly associated with the pain experience. This impairment represents a major obstacle to daily activities and rehabilitation, especially in the chronic pain population. Here we review clinical and preclinical studies that have investigated pain-related alterations in cognition. These include impaired attentional, executive and general cognitive functioning. We describe the anatomical, neurochemical and molecular substrates common to both cognitive processing and supraspinal pain processing, and present the evidence for their involvement in pain-related cognitive impairment. We also examine the added complexity of cognitive impairment caused by analgesic medications and how this can further impact on morbidity in chronic pain patients. The need for a better understanding of the mechanisms of both pain-induced and treatment-related cognitive impairment is highlighted. Further research in this area will aid our understanding of patient symptoms and their underlying pathophysiology, ultimately leading to increased provision of guided therapy.

Short-form measures of diabetes-related emotional distress: the Problem Areas in Diabetes Scale (PAID)-5 and PAID-1

Aims/hypothesisWe wanted to identify a five-item short form of the Problem Areas in Diabetes Scale and a single-item measure for rapid screening of diabetes-related emotional distress.MethodsUsing an existing database of 1,153 patients with diabetes, we conducted a principal-components analysis to identify a set of five items and then conducted a reliability analysis and validity checks. From those five items, we identified the item with the strongest psychometric properties as a one-item screening tool.ResultsWe identified a reliable and valid short version of the Problem Areas in Diabetes Scale (PAID) comprising five of the emotional-distress questions of the full PAID items (PAID-5, with items 3, 6, 12, 16, 19). The PAID-5 has satisfactory sensitivity (94%) and specificity (89%) for recognition of diabetes-related emotional distress. We also identified a one-item screening tool, the PAID-1 (Question 12: Worrying about the future and the possibility of serious complications), which has concurrent sensitivity and specificity of about 80% for the recognition of diabetes-related emotional distress.Conclusions/interpretationThe PAID-5 and PAID-1 appear to be psychometrically robust short-form measures of diabetes-related emotional distress.

Validation of the Chronic Pain Acceptance Questionnaire (CPAQ) in an Internet sample and development and preliminary validation of the CPAQ-8

&NA; This study investigated the psychometric properties of the Chronic Pain Acceptance Questionnaire (CPAQ) in a mixed chronic pain, Internet sample and sought to develop a valid and reliable short form. Questionnaires were completed by 428 respondents, comprising a sample accessed via the Internet (n = 319) and a sample who completed a paper and pencil version of the measures (n = 109). Using confirmatory factor analysis (CFA) the two‐factor structure of the CPAQ in the Internet sample was supported, though a good model fit was only achieved following the removal of one item. The resultant 19 item CPAQ demonstrated good reliability and evidence of validity was obtained for this sample. Data from the Internet sample were used to derive an eight‐item short form. The two four‐item factors (activity engagement [AE] and pain willingness [PW]) were confirmed using CFA and found to be invariant across both samples with good scale reliability. Higher CPAQ‐8 and subscale scores were correlated with less depression and anxiety, pain severity and pain interference, and fewer medical visits for pain. Using structural equation modelling both subscales were found to partially mediate the impact of pain severity on pain interference and emotional distress. In this model AE had stronger associations with outcomes while PW accounted for a small portion of the variance in pain interference and anxiety, but not depression. This study confirmed the two‐factor structure of the CPAQ in a mixed chronic pain Internet sample and provides preliminary evidence for the psychometric soundness of the CPAQ‐8.

Chronic pain in the Republic of Ireland—Community prevalence, psychosocial profile and predictors of pain-related disability: Results from the Prevalence, Impact and Cost of Chronic Pain (PRIME) study, Part 1

&NA; The aims of the PRIME study (Prevalence, Impact and Cost of Chronic Pain) were 3‐fold: (1) to determine the point prevalence of chronic pain in Ireland; (2) to compare the psychological and physical health profiles of those with and without chronic pain; and (3) to explore a predictive model of pain‐related disability. A postal survey of 3136 people was conducted with a representative community‐based sample of adults. Measures were obtained for sociodemographic variables, physical and psychological well‐being, depressive symptoms, presence of pain, pain severity, pain‐related disability, and illness perceptions. Responses were received from 1204 people. The prevalence of chronic pain was 35.5% (95% CI = 32.8–38.2) (n = 428). No gender difference in prevalence was found. Prevalence of pain increased with age and was associated with manual employment. The most commonly reported site of pain was the lower back (47.6%); however, multiple pain sites was the norm, with more than 80% of participants reporting more than 1 pain site. Approximately 12% of participants were unable to work or were on reduced work hours because of pain. Of those with chronic pain, 15% met the criteria for clinically relevant depression compared with 2.8% of those without pain. A multiple regression analysis, predicting 67% of variance, showed that pain intensity was the strongest predictor of pain‐related disability. Depression and illness perceptions were also predictive of pain‐related disability, after controlling for the effects of pain intensity. Chronic pain is a prevalent health problem in Ireland and is associated with significant psychological and functional disability. Psychological factors appear to influence the level of pain‐related disability. Chronic pain affects approximately one‐third of the population in Ireland, and depressive symptoms occur 5 times more often than in persons without chronic pain.

Monitoring of Individual Needs in Diabetes (MIND): Baseline Data From the Cross-National Diabetes Attitudes, Wishes, and Needs (DAWN) MIND Study

OBJECTIVE To test the feasibility and impact of implementing the computer-assisted Monitoring of Individual Needs in Diabetes (MIND) procedure, which is aimed at improving recognition and management of the psychological needs of diabetic patients in routine care. RESEARCH DESIGN AND METHODS The MIND study was implemented in diabetes clinics across eight countries as part of the annual review. The computerized assessment covered emotional well-being (World Health Organization 5 Well-Being Index), diabetes-related distress (Problem Areas in Diabetes), life events, and the patient’s agenda. Medical data were retrieved from the charts, and agreed-upon actions were recorded. RESULTS Of 1,567 patients monitored using the MIND, 24.9% had either likely depression or high diabetes-related distress; 5.4% had both. Over 80% of these patients were newly identified cases, and 41% of patients with depression were referred to a mental health professional. CONCLUSIONS Monitoring of well-being and diabetes-related distress as part of routine diabetes care is feasible and helps to identify and discuss unmet psychosocial needs.

Sexuality and personal relationships for people with an intellectual disability. Part I: service-user perspectives.

BACKGROUND Despite a recent ideological shift towards the recognition of sexual autonomy for people with an intellectual disability (ID), there are continuing social and cultural barriers to sexual expression. Part I of the current two-part study assessed the sexual knowledge, experiences and aspirations of service users through focus groups and also examined their perceptions of impediments to achieving sexual autonomy. METHOD Thirty-two participants (20 male, 12 female) attending an ID service participated in focus groups delineated by gender and age group (13-17 years; 18-30 years; 31+ years). RESULTS Analysis of the focus groups showed that service users, especially those over the age of 18 years, had an understanding of their sexual rights but also identified a number of social and cultural barriers that they felt prevent them from achieving sexual autonomy. Those under the age of 18 years had only rudimentary knowledge of sexuality issues, for example pregnancy and sexual anatomy, but aspired to relationships and marriage similar to those over the age of 18 years. Family and staff attitudes appeared to be very influential in the views of respondents. All service users had received some form of sex education, although the benefits of such education appeared most enduring for those over 18 years. CONCLUSION Service users had an understanding of their sexual rights and the social and environmental barriers that prevent them from fulfilling their rights. The provision of sex education training and promotion of positive attitudes towards appropriate sexual expression is critical to the realization of sexual autonomy for people with an ID.

Enhancing capacity to make sexuality‐related decisions in people with an intellectual disability

AIM The aim of the study was to apply an intervention to the area of sexual knowledge in order to determine if capacity to make sexuality-related decisions could be improved. METHOD The study adopted a single subject design using multiple baseline method with four adults with a moderate intellectual disability. The intervention consisted of individually tailored sex education adapted from Living Your Life (Bustard 2003). Treatment was offered to each participant twice weekly for a 10-week period on a one-to-one basis. The Sexual Consent and Education Assessment (SCEA, Kennedy 1993) was used for measurement purposes. The SCEA K-Scale (knowledge) and the S-Scale (safety practices) were administered weekly throughout the baseline, treatment and post-treatment phases of the study. Staff concerns were also assessed using the SCEA Inappropriate Sexual Behaviour Scale. RESULTS All four participants improved their decision-making capacity in all targeted areas as measured by improvements in K-Scale and S-Scale scores. Staff concerns were not increased as indicated by results on the Inappropriate Sexual Behaviour Scale. Six-month follow-up data for three of the participants showed maintenance of scores on the S-Scale and some decay in scores on the K-Scale from post-intervention performance. CONCLUSION The results demonstrate that tailored sexuality education can improve capacity to make sexuality-related decisions.

Sexuality and personal relationships for people with an intellectual disability. Part II: staff and family carer perspectives

BACKGROUND Recent ideological shifts in service provision promote appropriate sexual expression for people with an intellectual disability (ID), although there is little evidence that such advances in ideology are matched by current service provision. Part II of the current two-part study assessed the attitudes of staff and family carers to the sexuality of people with an ID. METHOD A questionnaire survey which included case scenarios was carried out with family (n = 155) and staff carers (n = 153) of people with an ID in the west of Ireland. RESULTS In general, staff carers were more inclined than family carers to openly discuss issues of sexuality with service users, and to suggest environmental, rather than service-user characteristics, as impediments to such discussions. Attitudinal differences emerged with significant differences between staff and family carers and between younger and older carers. Staff carers were more likely to support service-user engagement in intimate and non-intimate relationships whereas the majority of family carers (80%) showed a preference for low levels of intimacy in service-user relationships. CONCLUSION When compared with the attitudes of family carers towards the sexuality of people with ID, the attitudes of staff carers more closely match those promoted by ideological developments. However, differences in attitudes between carer groups may lead to inconsistent approaches to the management of sexuality. As a consequence, we conclude that there is continued need to provide staff and family carers with opportunities for dialogue and an ongoing need for training in the area of sexuality.

The Economic Cost of Chronic Noncancer Pain in Ireland: Results From the PRIME Study, Part 2

UNLABELLED To assess the economic cost of chronic pain in Ireland, information was gathered from 140 people with chronic pain. Direct and indirect costs attributable to chronic pain and medical conditions of which chronic pain was a feature were recorded retrospectively for 12 months. Mean cost per chronic pain patient was estimated at €5,665 per year across all grades of pain, with mean costs increasing according to the severity of pain. A small proportion of patients account for the bulk of costs-the top 5% most expensive patients accounted for 26.4% of costs, with a mean cost per patient of €29,936, and the 10% most expensive patients were responsible for 42.8% of all costs. Total cost for individuals aged 20 and above was estimated at €5.34 billion per year, or 2.86% of Irish GDP in 2008. Those with clinically elevated depression scores had costs that were twice as high as people who scored below the depression cut-off score. Chronic pain services in Ireland are generally underresourced. Improved coordination and better management of patients via interdisciplinary pain rehabilitation program is essential and may offer a means of reducing the sizeable economic burden of chronic pain. PERSPECTIVE The cost of chronic pain per patient was €5,665 per year extrapolated to €5.34 billion or 2.86% of GDP per year. Those with clinically significant depression had costs twice as high as those without depression. The significant burden of chronic pain highlights the need for cost effective interventions to reduce long-term disability.

Relationships, sexuality and decision-making capacity in people with an intellectual disability.

Purpose of review The current review attempts to summarize the current status of our knowledge and clinical practice in the complex and challenging area of relationships and sexuality for people with an intellectual disability. Recent findings Although there has been an ideological shift within services for people with an intellectual disability towards person-centredness and inclusivity, this change has not manifested in an obvious way at the practice level in the area of relationships and sexual expression. Recent surveys of caregivers and service providers do show a greater awareness of the fact that sexuality is a central part of personal identity, yet generally restrictive or prohibitive attitudes prevail at both individual and organizational levels. These attitudes appear to reflect a fear of possible legal sanction as well as ethical and moral conflicts. The views and experiences of people with an intellectual disability generally confirm this impression that, whereas some small changes have taken place, the prevailing experience is of restriction. Whereas there is now an abundance of sexuality and relationship educational programmes available, they require more rigorous and systematic evaluation both in terms of their effectiveness for enhancing knowledge and, more importantly, for examining the impact of that education on behaviour and capacity to make sexuality-related decisions, which we know to be a fluid ability. Summary There is a need for greater education of caregivers and a need for discussion of the complex issues regarding relationships and sexuality at a societal and policy level. The development of self-advocacy in disability services provides a vehicle to operationalize the changing service ideologies in a way that provides greater opportunities for enriching relationship experiences whilst also preventing undue risk of harm. However, successful self-advocacy requires organizational support, and this remains the greatest challenge for service providers.