Study protocol: Delayed intervention randomised controlled trial within the Medical Research Council (MRC) Framework to assess the effectiveness of a new palliative care service

Background: Palliative care has been proposed to help meet the needs of patients who suffer progressive non-cancer conditions but there have been few evaluations of service development initiatives. We report here a novel protocol for the evaluation of a new palliative care service in this context. Methods/Design: Using the MRC Framework for the Evaluation of Complex Interventions we modelled a new palliative care and neurology service for patients severely affected by Multiple Sclerosis (MS). We conducted qualitative interviews with patients, families and staff, plus a literature review to model and pilot the service. Then we designed a delayed intervention randomised controlled trial to test its effectiveness as part of phase II of the MRC framework. Inclusion criteria for the trial were patients identified by referring clinicians as having unresolved symptoms or psychological concerns. Referrers were advised to use a score of greater than 8 on the Expanded Disability Scale was a benchmark. Consenting patients newly referred to the new service were randomised to either receive the palliative care service immediately (fast-track) or after a 12-week wait (standard best practice). Face to face interviews were conducted at baseline (before intervention), and at 4–6, 10–12 (before intervention for the standard-practice group), 16– 18 and 22–24 weeks with patients and their carers using standard questionnaires to assess symptoms, palliative care outcomes, function, service use and open comments. Ethics committee approval was granted separately for the qualitative phase and then for the trial. Discussion: We publish the protocol trial here, to allow methods to be reviewed in advance of publication of the results. The MRC Framework for the Evaluation of Complex Interventions was helpful in both the design of the service, methods for evaluation in convincing staff and the ethics committee to accept the trial. The research will provide valuable information on the effects of palliative care among non-cancer patients and a method to evaluate palliative care in this context

The relationship between ILL/document supply and journal subscriptions

Purpose: The purpose of this article is to provide insights into the relationship between ILL/ document supply and journal subscriptions and to assess recent trends in the ILL service. Design/methodology/Approach: This survey is based on data from the ILL service conducted over the five year period 2005-2009 through the Italian NILDE (Network for Inter-Library Document Exchange) network. Findings: This article bears out important previous findings that ILL is not used as a surrogate for journal subscriptions. This is supported by the analysis of a broad number of titles and over a wide time-range. On the contrary, analysis of data transactions, particularly of the most requested journals, can bring about positive effects on new title acquisitions and negotiations with publishers. This paper also shows, at least for Italy, an overall growth and vitality of ILL, in spite of the widespread availability of e-journals acquired through consortia purchasing. Originality/Value: An insight into the relationship between ILL and journal subscriptions in Italy, a country where few studies have been carried out, and none at all for such a large number of libraries and transactions

Psychological treatments and psychotherapies in the neurorehabilitation of pain. Evidences and recommendations from the italian consensus conference on pain in neurorehabilitation

BACKGROUND: It is increasingly recognized that treating pain is crucial for effective care within neurological rehabilitation in the setting of the neurological rehabilitation. The Italian Consensus Conference on Pain in Neurorehabilitation was constituted with the purpose identifying best practices for us in this context. Along with drug therapies and physical interventions, psychological treatments have been proven to be some of the most valuable tools that can be used within a multidisciplinary approach for fostering a reduction in pain intensity. However, there is a need to elucidate what forms of psychotherapy could be effectively matched with the specific pathologies that are typically addressed by neurorehabilitation teams. OBJECTIVES: To extensively assess the available evidence which supports the use of psychological therapies for pain reduction in neurological diseases. METHODS: A systematic review of the studies evaluating the effect of psychotherapies on pain intensity in neurological disorders was performed through an electronic search using PUBMED, EMBASE, and the Cochrane Database of Systematic Reviews. Based on the level of evidence of the included studies, recommendations were outlined separately for the different conditions. RESULTS: The literature search yielded 2352 results and the final database included 400 articles. The overall strength of the recommendations was medium/low. The different forms of psychological interventions, including Cognitive-Behavioral Therapy, cognitive or behavioral techniques, Mindfulness, hypnosis, Acceptance and Commitment Therapy (ACT), Brief Interpersonal Therapy, virtual reality interventions, various forms of biofeedback and mirror therapy were found to be effective for pain reduction in pathologies such as musculoskeletal pain, fibromyalgia, Complex Regional Pain Syndrome, Central Post-Stroke pain, Phantom Limb Pain, pain secondary to Spinal Cord Injury, multiple sclerosis and other debilitating syndromes, diabetic neuropathy, Medically Unexplained Symptoms, migraine and headache. CONCLUSIONS: Psychological interventions and psychotherapies are safe and effective treatments that can be used within an integrated approach for patients undergoing neurological rehabilitation for pain. The different interventions can be specifically selected depending on the disease being treated. A table of evidence and recommendations from the Italian Consensus Conference on Pain in Neurorehabilitation is also provided in the final part of the pape

Influence of APOE and RNF219 on Behavioral and Cognitive Features of Female Patients Affected by Mild Cognitive Impairment or Alzheimer's Disease.

The risk for Alzheimer's disease (AD) is associated with the presence of the ?4 allele of Apolipoprotein E (APOE) gene and, recently, with a novel genetic variant of the RNF219 gene. This study aimed at evaluating interactions between APOE-?4 and RNF219/G variants in the modulation of behavioral and cognitive features of two cohorts of patients suffering from mild cognitive impairment (MCI) or AD. We enrolled a total of 173 female MCI or AD patients (83 MCI; 90 AD). Subjects were screened with a comprehensive set of neuropsychological evaluations and genotyped for the APOE and RNF219 polymorphic variants. Analysis of covariance was performed to assess the main and interaction effects of APOE and RNF219 genotypes on the cognitive and behavioral scores. The analysis revealed that the simultaneous presence of APOE-?4 and RNF219/G variants results in significant effects on specific neuropsychiatric scores in MCI and AD patients. In MCI patients, RNF219 and APOE variants worked together to impact the levels of anxiety negatively. Similarly, in AD patients, the RNF219 variants were found to be associated with increased anxiety levels. Our data indicate a novel synergistic activity APOE and RNF219 in the modulation of behavioral traits of female MCI and AD patients

Flying in the face of illusion. A comparative study of the variables that interact in English-language scientific journals publishing translations.

Presented at the Riga Technical University Institute of Applied Linguistics conference "Meaning in Translation: Illusion of Precision", Riga, Latvia, 12-15 September 2012Gabriel García Márquez joked that if you say you've seen an elephant flying, nobody will believe you. But if you say you've seen four hundred and twenty-five flying elephants, people probably will believe you. The “Illusion of Precision” is a perception shared by statisticians and translators alike. Holmes sought to add precision to Translation Studies by mapping out the territory. He placed practicing translators within an academic sphere that seeks to shed light on an all-too-obscure practice in which academics can employ empirical (statistical) measures but “naïve” translators are still confounded by the “illusion” that their labours count for something. What Holmes termed “function-oriented descriptive translation studies”, or socio-translation studies, has to do with the ‘influence exerted’ as a consequence of the texts that are translated in a given context. In the world of science, English is the lingua franca and authors whose texts are translated and accepted for publication by the Anglophone gatekeepers of scientific knowledge often owe much to the translators that goes unrecognized. The decision to translate a journal from its original language into English has had mixed results (Robinson 2010, 2013) yet translators working into English feel they must be contributing to the “success” of their clients. The present study describes the major variables–access, author geographical location, authorship practices, citation practices, editorial board, editorial strategy, the Impact factor with its limitations and possible “manipulation”, the Immediacy Index, internationality, journal geographical location, language, marketing, peer-review, and quality–that interact in the reception of scientific publications and the statistical methods used to assess the relative value of each in an attempt to determine whether academics or translators can empirically demonstrate the value of translations. Our conclusions are disappointing. Such is the complexity of the interrelations between variables that translators’ illusions, despite the application of much statistical precision, remain illusions. It would seem that a translation’s worth can, as yet, be quantified only in terms of sentiment and common sense rather than through solid, statistical evidence

Exploring the experiences of living with Lewy body dementia: An integrative review.

AIM: Lewy body dementia is a common neurodegenerative dementia with unique challenges in managing day-to-day life. A more in-depth multifaceted picture of the Lewy body dementia lived experience will enable identification of best practice and future research direction. The review aim was to explore experiences of people living with Lewy body dementia and their family carers. DESIGN: Integrative review method informed by Whittemore and Knafl, supported by the information retrieval framework PALETTE. A convergent integrated approach enabled synthesis of key findings and theme identification. DATA SOURCES: Medline, CINAHL, PsycINFO, AMED, and ALOIS databases were systematically searched to find studies published between 1995 and 2020. REVIEW METHODS: Twenty-six articles from twenty studies were synthesized (from 1583 retrieved). Quality and relevance were appraised using the Mixed-Methods Appraisal Tool and Gough's 'Weight of Evidence' framework. Data management was supported by ATLAS.ti 8 and COVIDENCE software. RESULTS: Four themes were identified: living with an uncertain diagnosis and prognosis; fear of the now - worry for the future; living with behavioural and psychiatric symptoms; and maintaining a social and emotional life. People reported difficulty finding information and support around diagnosis, disease progression and managing complex symptoms. The result is increased caregiver burden, grief and stress and reduced quality of life. CONCLUSION: Delayed diagnosis and complex symptom burden means people are not getting the timely support and information they need to live and die well. Current evidence is largely quantitative, with a focus on family caregiver burden and unmet need. The challenge remains in how to capture a more holistic picture of the lived experience for people living with Lewy body dementia and those who care for them. IMPACT: This review highlighted current knowledge and identified gaps in exploring the lived experience for people with Lewy body dementia and their families

Journal Evaluation by Environmental and Resource Economists: A Survey

Using an online survey, we have asked the researchers in the field of environmental and resource economics how they themselves would rank a representative list of journals in their field. The results of this ranking are then compared to the ordering based on the journals’ impact factors as published by Thomson Scientific. The two sets of rankings seem to be positively correlated, but statistically the null hypothesis that the two rankings are uncorrelated cannot be rejected. This observation suggests that researchers interpret the current quality of journals based on other factors in addition to the impact factors.

Use of the STAR PROCESS for Children with Sensory Processing Challenges

Background: This study examined the effectiveness of the STAR PROCESS, an intensive, short-term intervention that combines principles of sensory integration, relationship-based therapy, and parental-therapist collaboration for children with sensory processing challenges. Method: A nonconcurrent multiple baseline, repeated measures design was used. Four boys, aged 5 years 0 months to 7 years 9 months, participated in this study. The mean length of intervention was 22 sessions delivered 3 to 5 times per week. A behavioral coding system was used to measure change in four areas: play level, positive affect, joint attention, and novel use of equipment. The theory of change reflects the use of multisensory experiences in combination with parent participation to impact outcomes. Results: Improvement was noted in play level in all of the participants. Multisensory experiences and parent participation were associated with these changes in two participants. Discussion: The study results suggest a feasible methodology to study occupational therapy interventions. The behavioral coding system was sensitive to change. Play abilities changed in all four children. Preliminary support was provided for the theory of change combining multisensory experiences with parent participation. Conclusion: A targeted treatment approach that emphasizes parents as play partners in a multisensory environment shows promise in remediating these deficits

Reflex Based Interventions For Children with Autism and Developmental Disabilities: An Evidence-Based Practice Project

This research will focus on reflex based interventions, specifically The Masgutova Neurosensorimotor Reflex Integration Method (MNRI Method). Background learning was completed by searching multiple search engines with combinations of keywords. The background information consisted of who the founder of MNRI is, what MNRI is, how it is done, and why the creator believes it works. MNRI was created by Dr. Svetlana Masgutova. Dr. Masgutova has her Doctorate in Developmental Educational Psychology (Dr. Svetlana Masgutova n.d.). Her doctoral work was geared toward the history of reflexes (Dr. Svetlana Masgutova n.d.; Rentschler, 2008). The background information she used came from the work of researchers such as Vygotsky and Piaget (Dr. Svetlana Masgutova n.d.; Rentschler, 2008). She also participated in work with posttraumatic stress disorder (PTSD) which eventually became the groundwork for MRNI (Dr. Svetlana Masgutova n.d.). She now works with individuals with multiple disorders and leads the MNRI International Team (Dr. Svetlana Masgutova n.d)