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.

Patient perspective : choosing or developing instruments

Previous Outcome Measures in Rheumatology (OMERACT) meetings recognized that patients view outcomes of intervention from a different perspective. This preconference position paper briefly sets out 2 patient-reported outcome (PRO) instrument approaches, the PROMISE computer adaptive testing (CAT) system and development of a rheumatoid arthritis-specific questionnaire to measure fatigue; a tentative proposal for a PRO instrument development pathway is also made.

Patient perspective workshop : moving towards OMERACT guidelines for choosing or developing instruments to measure patient-reported outcomes

The workshop Choosing or Developing Instruments held at the Outcome Measures in Rheumatology (OMERACT) 10 meeting was designed to help participants think about the underlying methods of instrument development. Conference pre-reading material and 3 brief introductory presentations elaborated the issues, and participants broke into discussion groups before reconvening to share insights, engage in a more general discussion of the issues, and vote on recommendations. Trade offs between using current imperfect measures and the long and complex process of developing new instruments were considered, together with the need for rigor in patient-reported outcome (PRO) instrument development. The main considerations for PRO instrument development were listed and a research agenda for action produced. As part of the agenda for action, it is recommended that researchers and patient partners work together to tackle these issues, and that OMERACT bring forward proposals for acceptable instrument development protocols that would meet an enhanced “Truth” statement in the OMERACT Filter.

Determination of lung volume by hydrogen dilution at the time of underwater weighing

A method for measuring the volume of air in the lungs at the time of underwater weighing is described. A low concentration of hydrogen is used as a tracer gas in a closed-circuit rebreathing system. At the end of a normal exhalation the subject is connected to a respiratory bladder containing 2 L of air with a small admixture of hydrogen. After an equilibration period of five breaths the subject submerges completely, together with the bladder, and underwater weight is measured. Lung volume, at the time of weighing, is determined by hydrogen dilution. Using this method, the coefficient of variation for body density in the same individual was 0.23%.

Baltic winter (amped folk instruments-ethereal and haunting with female vocals)

Baltic Winter - a Slavic mermaid rests upon a rock on the edge of the Baltic Sea. It is night time during the depths of winter. She risks not being able to return to the sea as it could freeze in the time that she drapes the snow crested pine trees with her ethereal calls. Her voice travels through the Medieval forest in search of her nymph . . . will he hear her? Or will her calls only serve to sing her loneliness?

OK . . . now for the technical . . . I wrote this with a documentary in mind. I have used a sampled Finnish/Estonian Kantele, a touch of an acoustic guitar, female vocals, percussion, and a couple of synths.

Weighing price of justice

Newspaper article examining the implications of the increasing price of justice at a state and federal level in Australia and the United States. Focuses largely on research examining the Queensland and Alabama prosecutions of Gabe Watson for hte death of his wife, Tina Thomas, on their honeymoon in October 2003.

Medication adherence self-report instruments : implications for practice and research

Background: After an acute cardiac event, adhering to recommendations for pharmacologic therapy is important in achieving optimal health outcomes. Considering the impressive evidence base for cardiovascular pharmacotherapy, strategies for promoting adherence are less well developed. Furthermore, accessing reliable, valid, and cost-effective mechanisms of monitoring adherence in the research and clinical settings is challenging. Aim: The aim of this article was to review published self-report measures assessing and monitoring medication adherence in cardiovascular disease and provide recommendations for research into medication adherence. Methods: The electronic databases CINAHL, Medline, and Science Direct were searched using the key search terms medication adherence and/or compliance, cardiovascular, self-report measures, and questionnaires. The World Wide Web was searched using the Google and Google Scholar search engines, and reference lists of retrieved documents were reviewed. The search strategy was verified by a health librarian. Instruments were included if they specifically addressed medication adherence as a discrete construct rather than a disease-specific or a generic health status measurement. Findings: Despite of the problems with medication adherence identified in the literature, only 7 instruments met the search criteria. There was limited use of instruments across studies and settings to enable comparison across populations and extensive psychometric evaluation. Conclusions: Medication adherence is a complex, multifaceted construct dependent on a range of physical, social, economic, and psychological considerations. In spite of the importance of adherence in ensuring optimal cardiovascular outcomes, conceptual underpinnings and methods of assessing medication adherence require further discussion and debate.

Measuring self-care in chronic heart failure : a review of the psychometric properties of clinical instruments

Background : Improved self-care skills and behaviors are an important outcome of patient education and counseling. Both researchers and health professionals need to utilize instruments that are reliable and valid at measuring this outcome to advance our understanding as to the efficacy of clinical practice directed toward improving self-care.

Objective : The aim of this study was to identify instruments that measure chronic heart failure (CHF) self-care and demonstrate their psychometric properties.

Methods : A search of Medline, Cumulative Index to Nursing and Allied Health Literature, Medline, PsycArticles, Psychology and Behavioral Sciences Collection, and PsycINFO databases elucidated studies published between January 1980 and February 2009 that measure CHF self-care. The clinical instruments selected were disease-specific measures of CHF self-care behaviors that are promoted in best practice guidelines. Only instruments that reported estimates of reliability and validity were included in this review. Psychometric properties of the instruments were evaluated according to practice guidelines.

Results : The literature search identified 14 instruments published in peer-reviewed journals that measured constructs that predict or correlate to self-care rather than self-care itself. Only 2 disease-specific measures of self-care were identified (Self-care Heart Failure Index [SCHFI] and European Heart Failure Self-care Behavior Scale [EHFScBS]) that have undergone rigorous psychometric testing in CHF populations. Five aspects of validity had been demonstrated with EHFScBS, and 6 aspects of validity had been demonstrated with SCHFI. Two of 3 aspects of reliability have been demonstrated in both instruments.

Conclusion : Only 2 reliable and valid tools have been developed to specifically measure CHF self-care. Further use of these instruments in the research arena may reduce gaps in our understanding of CHF self-care and further shape clinical practice directed at improving it.

Variance-covariance based weighing for neural network ensembles

Neural network (NN) is a popular artificial intelligence technique for solving complicated problems due to their inherent capabilities. However generalization in NN can be harmed by a number of factors including parameter's initialization, inappropriate network topology and setting parameters of the training process itself. Forecast combinations of NN models have the potential for improved generalization and lower training time. A weighted averaging based on Variance-Covariance method that assigns greater weight to the forecasts producing lower error, instead of equal weights is practiced in this paper. While implementing the method, combination of forecasts is done with all candidate models in one experiment and with the best selected models in another experiment. It is observed during the empirical analysis that forecasting accuracy is improved by combining the best individual NN models. Another finding of this study is that reducing the number of NN models increases the diversity and, hence, accuracy.