Quality of life in restless legs syndrome: A systematic review of clinical trials and a critical review of instruments

Restless legs syndrome (RLS) is a neurological movement disorder characterized by sensory symptoms and motor disturbances. While the underlying cause remains unknown, it is suggested that 20–25% of people with RLS are affected seriously enough to require pharmacological treatment. Dopamine agonists (DAs) are the most common treatment and act by increasing the low levels of dopamine to which RLS is often attributed. A growing literature highlights the debilitating and distressing nature of this condition from the patient's perspective. While sleep problems are most commonly reported, the impact of RLS on quality of life (QOL) is wide ranging, affecting relationships with partners, sex life, family life, social life, leisure activities, friendships, everyday activities, concentration, travel, career/work, sleep, and health.

We conducted a systematic review of clinical trials in which DAs have been evaluated in terms of RLS-specific QOL, i.e. their impact on the QOL of people with RLS, and critically reviewed the development history and measurement properties of RLS-specific QOL instruments.

A systematic search using terms synonymous with RLS, DAs and QOL was conducted using Scopus software, which includes MEDLINE, PsycINFO, EMBASE, and CINAHL. Our search covered publications from 2000 (prior to which RLS-specific QOL measures did not exist) to August 2009. Trials were included in our review if they evaluated DAs for the treatment of adults with RLS and reported evaluation using an RLS-specific QOL measure. We also ran citation searches to identify papers reporting the development history and measurement properties of the identified RLS-specific QOL instruments.

Three measures of RLS-specific QOL have been developed in recent years and are reviewed here: the Restless Legs Syndrome Quality of Life (RLSQOL) questionnaire, the Restless Legs Syndrome Quality of Life Instrument (RLS-QLI), and the Quality of Life Restless Legs Syndrome (QOL-RLS) measure. Critical review indicates that each has limitations (particularly in terms of published developmental history and content validity). Eleven trials of DAs were identified that included assessment of RLS-specific QOL (nine using the RLSQOL and two using the QOL-RLS). In all studies, significant improvements in RLS-specific QOL were observed, although these were mostly short term (12 weeks) and large placebo effects were also noted.

In people with RLS, the use of DAs has been shown to improve RLS-specific QOL. Longer-term, large-scale studies may be needed to confirm these findings and demonstrate statistically significant improvements in RLS-specific QOL at lower doses. Further development of the RLS-specific QOL measures is needed to ensure that the full impact of RLS (and the full benefit of new treatments) on aspects of life identified as important to individuals is captured in future studies.

Social stigma in diabetes : a framework to understand a growing problem for an increasing epidemic

A comprehensive understanding of the social and psychological impact of diabetes mellitus is important for informing policy and practice. One potentially significant, yet under-researched, issue is the social stigma surrounding diabetes. This narrative review draws on literature about health-related stigma in diabetes and other chronic conditions in order to develop a framework for understanding diabetes-related stigma. Our review of the literature found that people who do not have diabetes assume that diabetes is not a stigmatized condition. In contrast, people with diabetes report that stigma is a significant concern to them, experienced across many life domains, e.g., in the workplace, in relationships. The experience of diabetes-related stigma has a significant negative impact on many aspects of psychological well-being and may also result in sub-optimal clinical outcomes for people with diabetes. We propose a framework that highlights the causes (attitudes of blame, feelings of fear and disgust, and the felt need to enforce social norms and avoid disease), experiences (being judged, rejected, and discriminated against), and consequences (e.g., distress, poorer psychological well-being, and sub-optimal self-care) of diabetes-related stigma and also identifies potential mitigating strategies to reduce diabetes-related stigma and/or enhance coping and resilience amongst people with diabetes. The systematic investigation of the experiences, causes, and consequences of diabetes-related stigma is an urgent research priority.

The Renal Treatment Satisfaction Questionnaire (RTSQ): a measure of satisfaction with treatment for chronic kidney failure.

BACKGROUND: Quality and effectiveness of care can be enhanced through the use of condition-specific measures of satisfaction with treatment. The aim of the present study was to design and develop a measure of satisfaction with treatment for patients with chronic kidney failure (CKF) for use in routine clinical care and clinical trials. The Renal Treatment Satisfaction Questionnaire (RTSQ) was designed to be suitable for people using any of the various treatment modalities for CKF. Items measure satisfaction with aspects of treatment, including convenience, flexibility, freedom, and satisfaction to continue with present form of treatment.

METHODS: A 12-item RTSQ was investigated at a UK hospital-based renal unit, using data from 140 outpatients undergoing renal replacement therapy (hemodialysis, n = 35; continuous ambulatory peritoneal dialysis, n = 57; transplantation, n = 46).

RESULTS: An 11-item scale was developed from the original 12-item version, with a single factor accounting for 59% of the variance and item loadings greater than 0.58. Scale reliability was excellent (alpha = 0.93) in the full sample and proved robust to analysis in separate treatment subgroups. As expected, RTSQ scores differed significantly ( P < 0.0001) between the transplantation and other treatment groups. Those who had received a transplant expressed greater overall satisfaction, with specific advantages of transplantation shown by all individual items, including convenience, time, lifestyle, freedom, and satisfaction to continue current treatment.

CONCLUSION: The RTSQ provides a brief reliable measure of satisfaction with treatment for patients with CKF that is suitable for use in routine clinical care and clinical trials.

Understanding exercise uptake and adherence for people with chronic conditions : a new model demonstrating the importance of exercise identity, benefits of attending and support

Understanding the factors influencing uptake and adherence to exercise for people with chronic conditions from different ages, genders and ethnicities is important for planning exercise services. This paper presents evidence supporting a new model of exercise uptake and adherence applicable to people with chronic conditions from diverse socio-demographic backgrounds. The study is based on 130 semistructured interviews with people with chronic conditions, including both those who did and those who did not attend exercise services, and supporters of those who attended. Analysis followed the guidelines of ‘framework analysis’. Results show that three factors were particularly important in influencing adherence behavior: (i) exercise identity, (ii) support and (iii) perceived benefits of attending. Social and cultural identities impacted on willingness to exercise, importance of exercise and perceived appropriateness of exercising. Having at least one supporter providing different types of support was associated with high levels of attendance. Those people who valued the social and psychological benefits of attending were more likely to be high attenders. The new model illustrates interaction between these three factors and discusses how these can be taken into account when planning exercise services for people with chronic conditions drawn from diverse socio-demographic groups.

Individuals with chronic low back pain have greater difficulty in engaging in positive lifestyle behaviours than those without back pain : an assessment of health literacy

Background: Despite the large volume of research dedicated to understanding chronic low back pain (CLBP), patient outcomes remain modest while healthcare costs continue to rise, creating a major public health burden. Health literacy - the ability to seek, understand and utilise health information - has been identified as an important factor in the course of other chronic conditions and may be important in the aetiology of CLBP. Many of the currently available health literacy measurement tools are limited since they measure narrow aspects of health literacy. The Health Literacy Measurement Scale (HeLMS) was developed recently to measure broader elements of health literacy. The aim of this study was to measure broad elements of health literacy among individuals with CLBP and without LBP using the HeLMS.
Methods: Thirty-six community-dwelling adults with CLBP and 44 with no history of LBP responded to the HeLMS. Individuals were recruited as part of a larger community-based spinal health study in Western Australia. Scores for the eight domains of the HeLMS as well as individual item responses were compared between the groups.
Results: HeLMS scores were similar between individuals with and without CLBP for seven of the eight health literacy domains (p > 0.05). However, compared to individuals with no history of LBP, those with CLBP had a significantly lower score in the domain ‘Patient attitudes towards their health’ (mean difference [95% CI]: 0.46 [0.11- 0.82]) and significantly lower scores for each of the individual items within this domain (p < 0.05). Moderate effect sizes ranged from d = 0.47-0.65.
Conclusions: Although no differences were identified in HeLMS scores between the groups for seven of the health literacy domains, adults with CLBP reported greater difficulty in engaging in general positive health behaviours. This aspect of health literacy suggests that self-management support initiatives may benefit individuals with CLBP.

The CDM-Net project : the development, implementation and evaluation of a broadband-based network for managing chronic disease

Background. In Australia most chronic disease management is funded by Medicare Australia through General Practitioner Management Plans (GPMPs) and Team Care Arrangements (TCAs). Identified barriers may be reduced effectively using a broadband-based network known as the Chronic Disease Management Service (CDMS).

Aims. To measure the uptake and adherence to CDMS, test CDMS, and assess the adherence of health providers and patients to GPMPs and TCAs generated through CDMS.

Methods. A single cohort before and after study.

Results. GPMPs and TCAs increased. There was no change to prescribed medicines or psychological quality of life. Attendance at allied health professionals increased, but decreased at pharmacies. Overall satisfaction with CDMS was high among GPs, allied health professionals, and patients.

Conclusion. This study demonstrates proof of concept, but replication or continuation of the study is desirable to enable the impact of CDMS on diabetes outcomes to be determined.

Chronic stress alters the density and morphology of microglia in a subset of stress-responsive brain regions

The current study, in parallel experiments, evaluated the impact of chronic psychological stress on physiological and behavioural measures, and on the activation status of microglia in 15 stress-responsive brain regions. Rats were subjected, for 14 days, to two 30 min sessions of restraint per day, applied at random times each day. In one experiment the effects of stress on sucrose preference, weight gain, core body temperature, and struggling behaviour during restraint, were determined. In the second experiment we used immunohistochemistry to investigate stress-induced changes in ionized calcium-binding adaptor molecule-1 (Iba1), a marker constitutively expressed by microglia, and major histocompatibility complex-II (MHC-II), a marker often expressed on activated microglia, in a total of 15 stress-responsive nuclei. We also investigated cellular proliferation in these regions using Ki67 immunolabelling, to check for the possibility of microglial proliferation. Collectively, the results we obtained showed that chronic stress induced a significant increase in anhedonia, a decrease in weight gain across the entire observation period, a significant elevation in core body temperature during restraint, and a progressive decrease in struggling behaviour within and over sessions. With regard to microglial activation, chronic stress induced a significant increase in the density of Iba1 immunolabelling (nine of 15 regions) and the number of Iba1-positive cells (eight of 15 regions). Within the regions that exhibited an increased number of Iba1-positive cells after chronic stress, we found no evidence of a between group difference in the number of MHC-II or Ki67 positive cells. In summary, these results clearly demonstrate that chronic stress selectively increases the number of microglia in certain stress-sensitive brain regions, and also causes a marked transition of microglia from a ramified-resting state to a non-resting state. These findings are consistent with the view that microglial activation could play an important role in controlling and/or adapting to stress.

Psychological needs of adolescents in the early phase of bipolar disorder : implications for early intervention

Aim: This paper will describe the rationale for, and importance of, psychological interventions for young people early in the course of bipolar disorder.
Methods: Emerging literature in this field will be discussed in addition to describing specific clinical challenges and opportunities with this population.
Results: In order to be more developmentally appropriate for young people with bipolar disorder, eight aspects of clinical work which may require modification were identified.
Conclusions: The evidence base for the effectiveness of psychological interventions for people diagnosed with bipolar disorder is growing. However, some aspects relating to working with adults with bipolar disorder require modification to be effective in working with young people early in the course of the disorder.

Demographic and psychological factors related to sexual desire among heterosexual women in a relationship

This study examined demographic, psychological, and relationship factors that are associated with the experience of sexual desire in women. The contribution of other aspects of sexual function on sexual desire was also investigated. The participants were 741 partnered heterosexual women (mean age¼45.7 years), who completed the Female Sexual Desire Questionnaire online, which evaluated their levels of sexual desire, as well as a range of individual and dyadic variables. For each of the six aspects of sexual desire assessed, the number and frequency of problems in other aspects of women’s sexual functioning were the most common predictors. The results demonstrated that sexual desire was lower among older, postmenopausal women and those who had been in their current relationship for a longer period of time. Women who reported that their partner experienced a sexual dysfunction also obtained lower sexual desire scores. These findings demonstrate the strong interrelationship between the different phases of the sexual response cycle for women. Further, they suggest that sexual dysfunction in one partner is likely to be associated with sexual dysfunction in the other partner. The clinical implications of these findings in terms of the treatment for sexual dysfunction among women (and their partners) are discussed.

Cardiovascular risk factors and psychological distress in Australian farming communities

Objective:  To examine the prevalence of cardiovascular disease (CVD) risk factors, psychological distress and associations between physical and mental health parameters within a cohort of the Australian farming community.

Design:  Cross-sectional descriptive study.

Setting:  Farming communities across Australia.

Participants:  Data of men (n = 957) and women (n = 835) farmers from 97 locations across Australia were stratified into categories based on National Cholesterol Education Program guidelines.

Main outcome measure(s):  Prevalence of and interrelationship between overweight, obesity, dyslipidaemia, hypertension, diabetes risk and psychological distress.

Results:  There was a higher prevalence of overweight (42.5%, 95% confidence interval (CI), 34.2–50.8), obesity (21.8%, 95% CI, 18.3–25.3), abdominal adiposity (38.4% 95% CI, 24.5–52.5), hypertension (54.0%, 95% CI, 34.4–73.5) and diabetes risk (25.3%, 95% CI, 17.7–36.7) in the farming cohort compared with national data. There was also a positive significant association between the prevalence of psychological distress and obesity, abdominal adiposity, body fat percentage and metabolic syndrome in older (age ≥ 50 years) participants.

Conclusions:  This study group of farming men and women exhibited an increased prevalence of CVD risk factors and co-morbidities. The findings indicate a positive association between psychological distress and risk for developing CVD, particularly in the older farmers. If the younger cohort were to maintain elevated rates of psychological distress, then it is foreseeable that the next generation of farmers could experience poorer physical health than their predecessors.

A randomised, feasibility trial of a tele-health intervention for acute coronary syndrome patients with depression (‘MoodCare’): study protocol

Background Coronary heart disease (CHD) and depression are leading causes of disease burden globally and the two often co-exist. Depression is common after Myocardial Infarction (MI) and it has been estimated that 15-35% of patients experience depressive symptoms. Co-morbid depression can impair health related quality of life (HRQOL), decrease medication adherence and appropriate utilisation of health services, lead to increased morbidity and suicide risk, and is associated with poorer CHD risk factor profiles and reduced survival. We aim to determine the feasibility of conducting a randomised, multi-centre trial designed to compare a tele-health program (MoodCare) for depression and CHD secondary prevention, with Usual Care (UC).

Methods Over 1600 patients admitted after index admission for Acute Coronary Syndrome (ACS) are being screened for depression at six metropolitan hospitals in the Australian states of Victoria and Queensland. Consenting participants are then contacted at two weeks post-discharge for baseline assessment. One hundred eligible participants are to be randomised to an intervention or a usual medical care control group (50 per group). The intervention consists of up to 10 × 30-40 minute structured telephone sessions, delivered by registered psychologists, commencing within two weeks of baseline screening. The intervention focuses on depression management, lifestyle factors (physical activity, healthy eating, smoking cessation, alcohol intake), medication adherence and managing co-morbidities. Data collection occurs at baseline (Time 1), 6 months (post-intervention) (Time 2), 12 months (Time 3) and 24 months follow-up for longer term effects (Time 4). We are comparing depression (Cardiac Depression Scale [CDS]) and HRQOL (Short Form-12 [SF-12]) scores between treatment and UC groups, assessing the feasibility of the program through patient acceptability and exploring long term maintenance effects. A cost-effectiveness analysis of the costs and outcomes for patients in the intervention and control groups is being conducted from the perspective of health care costs to the government.

Discussion This manuscript presents the protocol for a randomised, multi-centre trial to evaluate the feasibility of a tele-based depression management and CHD secondary prevention program for ACS patients. The results of this trial will provide valuable new information about potential psychological and wellbeing benefits, cost-effectiveness and acceptability of an innovative tele-based depression management and secondary prevention program for CHD patients experiencing depression.

The effect of obesity on polycystic ovary syndrome : a systematic review and meta-analysis

While many women with polycystic ovary syndrome (PCOS) are overweight, obese or centrally obese, the effect of excess weight on the outcomes of PCOS is inconsistent. The review aimed to assess the effects of overweight, obesity and central obesity on the reproductive, metabolic and psychological features of PCOS. MEDLINE, EMBASE, CINAHL, Cochrane Central Register of Controlled Trials (CENTRAL) and PSYCINFO were searched for studies reporting outcomes according to body mass index categories or body fat distribution. Data were presented as mean difference or risk ratio (95% confidence interval). This review included 30 eligible studies. Overweight or obese women with PCOS had decreased sex hormone-binding globulin (SHBG), increased total testosterone, free androgen index, hirsutism, fasting glucose, fasting insulin, homeostatic model assessment-insulin resistance index and worsened lipid profile. Obesity significantly worsened all metabolic and reproductive outcomes measured except for hirsutism when compared to normal weight women with PCOS. Overweight women had no differences in total testosterone, hirsutism, total-cholesterol and low-density lipoprotein-cholesterol compared to normal weight women and no differences in SHBG and total testosterone compared to obese women. Central obesity was associated with higher fasting insulin levels. These results suggest that prevention and treatment of obesity is important for the management of PCOS.

A longitudinal examination of burden and psychological distress in carers of people with an eating disorder

Purpose
Eating disorders are chronic conditions that require ongoing, high level care. Despite the chronic nature of eating disorders, to date, previous research examining eating disorder carer burden and psychological distress has been cross-sectional only. Therefore, the current study aimed to conduct a preliminary longitudinal examination of the predictors of carer burden and psychological distress for carers of those with an eating disorder.
Methods
A self-report, quantitative questionnaire approach was utilised. Forty-two carers completed three self-report questionnaires over a period of 9 months (initial, 4½ and 9 months) assessing carer burden, psychological distress, carer needs, expressed emotion, coping strategies and social support.
Results
Maladaptive coping, expressed emotion and carer needs were significant longitudinal predictors of carer burden. Carer psychological distress could not be predicted longitudinally.
Conclusions
In order to reduce carer burden, interventions should test whether reducing maladaptive coping strategies, expressed emotion and addressing carer needs lead to lower carer burden and distress.