Measures of Health-Related Quality of Life Outcomes in Pediatric Neurosurgery: Literature Review

Background Improving value in healthcare means optimizing outcomes and minimizing costs. The emerging pay-for-performance era requires understanding of the effect of healthcare services on health-related quality of life (HRQoL). Pediatric and surgical subspecialties have yet to fully integrate HRQoL measures into practice. The present study reviewed and characterized the HRQoL outcome measures across various pediatric neurosurgical diagnoses. Methods A literature review was performed by searching PubMed and Google Scholar with search terms such as “health-related quality of life” and “pediatric neurosurgery” and then including the specific pathologies for which a HRQoL instrument was found (e.g., “health-related quality of life” plus “epilepsy”). Each measurement was evaluated by content and purpose, relative strengths and weaknesses, and validity. Results We reviewed 68 reports. Epilepsy, brain tumor, cerebral palsy, spina bifida, hydrocephalus, and scoliosis were diagnoses found in reported studies that had used disease-specific HRQoL instruments. Information using general HRQoL instruments was also reported. Internal, test–retest, and/or interrater reliability varied across the instruments, as did face, content, concurrent, and/or construct validity. Few instruments were tested enough for robust reliability and validity. Significant variability was found in the usage of these instruments in clinical studies within pediatric neurosurgery. Conclusions The HRQoL instruments used in pediatric neurosurgery are currently without standardized guidelines and thus exhibit high variability in use. Clinicians should support the development and application of these methods to optimize these instruments, promote standardization of research, improve performance measures to reflect clinically modifiable and meaningful outcomes, and, ultimately, lead the national discussion in healthcare quality and patient-centered care

Models of collaboration between psychologist and family doctor: a systematic review of primary care psychology

open2noThe prevalence of psychological suffering is greater than the actual request for clinical consultation in Europe (Alonso et al., 2004). In Italy, no more than 5.5% of the population requested psychological assistance during lifetime (Miglioretti et al., 2008). There are different obstacles that prevent the access to mental health services, such as economic restrictions (Mulder et al., 2011), cultural prejudice (Kim et al., 2010), and lack of knowledge about the service providers that can answer to the patient’s psychological needs (Molinari et al., 2012). Therefore, the psychologist is often consulted as a last resort, only after everything else has failed, when problems have become severe, and thus requiring longer, more intensive, and expensive treatments. The introduction of the Primary Care Psychologist, a professional who works together with the family doctor, allows to overcome the above-mentioned problems and intercept unexpressed needs for psychological assistance. This professional role is operating in many countries since several years. In this study, current literature concerning different models of collaboration between physician and psychologist, in Europe and in Italy, was reviewed. A systematic search of Web of Science (ISI), Pubmed, Scopus, and PsychINFO was conducted using the initial search terms Primary Care Psychologist, Family Doctor, Primary Care, Collaborative Practice, and several relevant papers were identified. The review has shown the improved quality of care when mental health care is integrated into primary. Analyzing how different programs are implemented, results indicated that the more efficacious models of Primary Care Psychology are those tailored on the environment’s needs.The results of our systematic review stress the importance of the Primary Care Psychologist implementation also in Italy, to intercept unexpressed psychological needs and enhance clients’ quality of life.openFrancesca, Bianco; Enrico, BenelliBianco, Francesca; Benelli, Enric

Core Health Outcomes In Childhood Epilepsy (CHOICE):Protocol for the selection of a core outcome set

This is the final version of the article. Available from BioMed Central via the DOI in this record.BACKGROUND: There is increasing recognition that establishing a core set of outcomes to be evaluated and reported in trials of interventions for particular conditions will improve the usefulness of health research. There is no established core outcome set for childhood epilepsy. The aim of this work is to select a core outcome set to be used in evaluative research of interventions for children with rolandic epilepsy, as an exemplar of common childhood epilepsy syndromes. METHODS: First we will identify what outcomes should be measured; then we will decide how to measure those outcomes. We will engage relevant UK charities and health professional societies as partners, and convene advisory panels for young people with epilepsy and parents of children with epilepsy. We will identify candidate outcomes from a search for trials of interventions for childhood epilepsy, statutory guidance and consultation with our advisory panels. Families, charities and health, education and neuropsychology professionals will be invited to participate in a Delphi survey following recommended practices in the development of core outcome sets. Participants will be able to recommend additional outcome domains. Over three rounds of Delphi survey participants will rate the importance of candidate outcome domains and state the rationale for their decisions. Over the three rounds we will seek consensus across and between families and health professionals on the more important outcomes. A face-to-face meeting will be convened to ratify the core outcome set. We will then review and recommend ways to measure the shortlisted outcomes using clinical assessment and/or patient-reported outcome measures. DISCUSSION: Our methodology is a proportionate and pragmatic approach to expediently produce a core outcome set for evaluative research of interventions aiming to improve the health of children with epilepsy. A number of decisions have to be made when designing a study to develop a core outcome set including defining the scope, choosing which stakeholders to engage, most effective ways to elicit their views, especially children and a potential role for qualitative research.This study is part of Changing Agendas on Sleep, Treatment and Learning in Childhood Epilepsy (CASTLE), which is funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research RP-PG-0615-20007

Quality of integrated chronic care measured by patient survey: identification, selection and application of most appropriate instruments\ud

Objective  To identify the most appropriate generic instrument to measure experience and/or satisfaction of people receiving integrated chronic care.\ud \ud Background  Health care is becoming more user-centred and, as a result, the experience of users of care and evaluation of their experience and/or satisfaction is taken more seriously. It is unclear to what extent existing instruments are appropriate in measuring the experience and/or satisfaction of people using integrated chronic care.\ud \ud Methods  Instruments were identified by means of a systematic literature review. Appropriateness of instruments was analysed on seven criteria. The two most promising instruments were translated into Dutch, if necessary, and administered to a convenience sample of 109 people with a chronic illness. Data derived from respondents were analysed statistically. Focus-group interviews were conducted to assess the semantic and technical equivalence as well as opinions of people about the applicability and relevance of the translated instruments.\ud \ud Results  From 37 instruments identified, the Patients’ Assessment of Care for chronIc Conditions (PACIC) and the short form of the Patient Satisfaction Questionnaire III (PSQ-18) were selected as most promising instruments. Both instruments produced similar median scores across people with different chronic conditions. The overall PACIC and its subscales and the overall PSQ-18 were highly internally consistent, but not the PSQ-18 subscales. Overall, the PACIC demonstrated better psychometric characteristics. PACIC and PSQ-18 scores were found to be moderately correlated. Whereas more respondents preferred the PSQ-18, focus-group participants regarded the PACIC to be more applicable and relevant. The technical and semantic equivalence of both instruments were sufficient.\ud \ud Conclusions  Because of its psychometric characteristics, perceived applicability and relevance, the PACIC is the most appropriate instrument to measure the experience of people receiving integrated chronic care\u

Can Neuroscience Help Predict Future Antisocial Behavior?

Part I of this Article reviews the tools currently available to predict antisocial behavior. Part II discusses legal precedent regarding the use of, and challenges to, various prediction methods. Part III introduces recent neuroscience work in this area and reviews two studies that have successfully used neuroimaging techniques to predict recidivism. Part IV discusses some criticisms that are commonly levied against the various prediction methods and highlights the disparity between the attitudes of the scientific and legal communities toward risk assessment generally and neuroscience specifically. Lastly, Part V explains why neuroscience methods will likely continue to help inform and, ideally, improve the tools we use to help assess, understand, and predict human behavior

Should the Quality and Outcomes Framework be abolished? No

Head to Head: Steve Gillam (doi:10.1136/bmj.c2710) argues that the general practice pay for performance scheme is not good value for money, but Niroshan Siriwardena (doi:10.1136/bmj.c2794) believes it needs to be improved not remove

Déjà vu and the entorhinal cortex: dissociating recollective from familiarity disruptions in a single case patient

Past research has demonstrated a relationship between déjà vu and the entorhinal cortex in patients with wider medial temporal lobe damage. The aim of the present research was to investigate this crucial link in a patient (MR) with a selective lesion to the left lateral entorhinal cortex to provide a more direct exploration of this relationship. Two experiments investigated the experiences of déjà vécu (using the IDEA questionnaire) and déjà vu (using an adapted DRM paradigm) in MR and a set of matched controls. The results demonstrated that MR had quantitatively more and qualitatively richer recollective experiences of déjà vécu. In addition, under laboratory-based déjà vu conditions designed to elicit both false recollection (critical lures) and false familiarity (weakly-associated lures), MR only revealed greater memory impairments for the latter. The present results are therefore the first to demonstrate a direct relationship between the entorhinal cortex and the experience of both déjà vu and déjà vécu. They furthermore suggest that the entorhinal cortex is involved in both weakly-associative false memory as well as strongly-associative memory under conditions that promote familiarity-based processing

The use of biomedicine, complementary and alternative medicine, and ethnomedicine for the treatment of epilepsy among people of South Asian origin in the UK

Studies have shown that a significant proportion of people with epilepsy use complementary and alternative medicine (CAM). CAM use is known to vary between different ethnic groups and cultural contexts; however, little attention has been devoted to inter-ethnic differences within the UK population. We studied the use of biomedicine, complementary and alternative medicine, and ethnomedicine in a sample of people with epilepsy of South Asian origin living in the north of England. Interviews were conducted with 30 people of South Asian origin and 16 carers drawn from a sampling frame of patients over 18 years old with epilepsy, compiled from epilepsy registers and hospital databases. All interviews were tape-recorded, translated if required and transcribed. A framework approach was adopted to analyse the data. All those interviewed were taking conventional anti-epileptic drugs. Most had also sought help from traditional South Asian practitioners, but only two people had tried conventional CAM. Decisions to consult a traditional healer were taken by families rather than by individuals with epilepsy. Those who made the decision to consult a traditional healer were usually older family members and their motivations and perceptions of safety and efficacy often differed from those of the recipients of the treatment. No-one had discussed the use of traditional therapies with their doctor. The patterns observed in the UK mirrored those reported among people with epilepsy in India and Pakistan. The health care-seeking behaviour of study participants, although mainly confined within the ethnomedicine sector, shared much in common with that of people who use global CAM. The appeal of traditional therapies lay in their religious and moral legitimacy within the South Asian community, especially to the older generation who were disproportionately influential in the determination of treatment choices. As a second generation made up of people of Pakistani origin born in the UK reach the age when they are the influential decision makers in their families, resort to traditional therapies may decline. People had long experience of navigating plural systems of health care and avoided potential conflict by maintaining strict separation between different sectors. Health care practitioners need to approach these issues with sensitivity and to regard traditional healers as potential allies, rather than competitors or quacks