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Introduction: Measuring patient-perceived outcomes following orthopaedic procedures have become an important component of clinical research and patient care. General and disease-specific outcomes measures have been developed and applied in orthopaedics to assess the patients’ perceived health status. Unfortunately, paper-based, self-administered instruments remain inefficient for collecting data because of: (a) missing data (b) respondent error, and (c) the costs to administer and enter data.Objective: To study the comparability of palm-top computer devices and paper–pencil self-administered questionnaires in the collection of health-related quality of life (HRQL) information from patients.Methods: The comparability of administering HRQL questionnaires using palm-top computer and traditional paper-based forms was tested in a sample of 96 patients with complaints of hip and/or knee pain. Each patient completed mailed versions of the Medical Outcomes Study (MOS), 36-item Health Survey (SF-36), and Western Ontario and McMasters University Arthritis Index (WOMAC) three weeks prior to presenting to clinic. At the clinic they were asked to complete the same outcomes measures using the palm-top computer or a paper-and-pencil version.Analysis: In the analysis, scale distributions, floor and ceiling effects, internal consistency and retest reliability of scales were compared across the two data collection methods. Because the baseline characteristics of the groups were not strictly comparable according to age, the data were analyzed for the entire sample and stratified according to age.Results: Few statistically significant differences were found for the means, variances and intra-class correlation coefficients between the methods of administration. While the scale distribution between the two methods was comparable, the internal consistency of the scales was dissimilar.Conclusions: Administration of HRQL questionnaires using portable palm-top computer devices has the potential advantage of decreased cost and convenience. These data lend some support for the comparability of palm-top computers and paper surveys for outcomes measures widely used in the field of orthopaedic surgery. The present study identified the lack of reliability across modes of administration that requires further study in a randomized comparability trial. These mode effects are important for orthopaedic surgeons to appreciate before implementing innovative data-capture technologies in their practices. [Copyright &y& Elsevier]

The National Institute on Aging (NIA), the newest of the 11 National Institutes of Health, is dedicated to improving the quality of life of the old in America through biomedical, social, and behavioral research. Aging is viewed as more than just decline and deterioration; it is also a process of continued development and accumulated knowledge. The NIA will encourage innovative research but will not support the delivery of health services, as that is the domain of the other agencies. In areas of overlap, such as diseases common to the old, the NIA will collaborate with other Institutes. A good target area for collaboration is senile dementia. Other areas of interest to the NIA are: encouraging the incorporation of geriatric medicine as a subspecialty, developing retirement test patterns, and investigating drug-drug and drug–age interactions, personality and social processes, and immunocompetence. [ABSTRACT FROM AUTHOR]

Background: People with an acquired brain injury (ABI) find it challenging to use social media due to changes in their cognition and communication skills. Using social media can provide opportunities for positive connection, but there is a lack of interventions specifically designed to support safe and successful social media use after ABI. Aims: To investigate the outcomes of completing a social media skills intervention and identify barriers and facilitators for future implementation. Methods & Procedures: The study used a mixed‐methods, pre‐post‐intervention design. A total of 17 adults with an ABI were recruited. Participants completed an intervention that included a short self‐guided course about social media skills (social‐ABI‐lity course), and then participated in a private, moderated Facebook group over a 12‐week period (social‐ABI‐lity Facebook group). Data were collected over this period through observation of group activity and weekly surveys. They were also collected on social media use and quality of life at pre‐intervention, post‐intervention and after 3 months. Participants provided feedback on the experience of participating in the programme via a post‐intervention interview. Outcomes & Results: At post‐intervention, there were significant improvements in confidence in using Facebook (p = 0.002) and enjoyment of using Facebook to connect with others (p = 0.013). There was no significant change in reported quality of life, although participants described the multiple benefits of connection they perceived from involvement in the group. Observational data and feedback interviews were informative about the feasibility and acceptability of the intervention. Conclusions & Implications: This pilot study provided preliminary evidence that an intervention comprising a short, self‐guided training course and a private, moderated Facebook group improved outcomes for people with ABI. Key recommendations for future implementation include embedding active peer moderators within groups and taking an individualized approach to delivery of the intervention. WHAT THIS PAPER ADDS: What is already known on the subject: Research has documented the challenges that people with ABI experience in using social media, and the difficulty for rehabilitation clinicians in providing appropriate support in this field. What this paper adds to existing knowledge: This pilot study reports the outcomes of people with ABI completing a short, self‐guided social media skills course and participating in a private, moderated Facebook group. After the intervention, participants reported significantly increased confidence and enjoyment in using Facebook, described the benefits of connection found in the groups, and suggested potential improvements for future implementation. What are the potential or actual clinical implications of this work?: With the growing use of social media for connection and participation, there is a professional obligation to address social media communication skills in cognitive–communication rehabilitation for people with ABI. The findings of this study will inform interventions and future research to assist people with ABI to build their social media skills for communication, social support and a sense of connection. [ABSTRACT FROM AUTHOR]

People with Down syndrome have complex health care needs which are not always fully met. Health care improvements are required to better meet these needs. Quality indicators are an important tool for improving health care. However, quality indicators for health care for people with Down syndrome are scarce. Existing quality indicators focus on medical (physical) needs or the clinical setting, even though it is acknowledged that quality measures should reflect the total of quality aspects relevant to the population at stake, which may encompass aspects beyond the medical domain. These aspects beyond the medical domain are the focus of the current paper, which aims to provide insight into the way people with Down syndrome live their lives, how health care may fit in, and how this may impact the development of quality indicators. The paper is based on data originating from interviews with people with Down syndrome and their parents as well as focus groups with support staff members working in assisted living facilities for people with intellectual disability. The data revealed a lot of variation in how people with Down syndrome live their lives. Nevertheless, we were able to identify 11 topics, which we grouped into three overarching themes: (1) Being different yet living a normal life; (2) Down syndrome‐(un)friendly society and services; and (3) family perspective. The variation in our data stresses the importance of health care that takes a person's life into account beyond the medical domain, as exemplified by the identified topics. Our findings also show that a good life is not merely depending on good health care supported by well‐defined quality indicators, but on (support in) all life domains. [ABSTRACT FROM AUTHOR]

Background: Acquired laryngotracheal stenosis (LTS) is a rare condition that causes breathlessness and dyspnoea. Patients have reconstructive airway surgery to improve their breathing difficulties, but both LTS and the surgery can cause voice difficulties. The existing evidence base for management of voice difficulties for adults with LTS focuses on symptoms. There is limited information to provide clinical guidance for speech and language therapists (SLTs) and a limited understanding of the impact of voice changes on adults with LTS. Aim: To investigate the lived experience of adults with laryngotracheal stenosis (LTS), who have had reconstructive surgery; here focussing on voice concerns with the aim of guiding clinical care for SLTs. Methods and Procedures: A phenomenological, qualitative study design was used. Focus groups and semi‐structured interviews were completed with adults living with LTS who had had reconstructive surgery. Audio recordings were transcribed and inductive thematic analysis was used by the research team to identify themes and sub‐themes. Outcomes and Results: A total of 24 participants (five focus groups and two interviews) took part in the study before thematic saturation was identified in analysis. Three main themes were identified specific to the experience of living with LTS: the Medical, Physical and Emotional journey. All participants referenced voice difficulties as they related to each of these overall themes. Sub‐themes directly related to voice included experience of surgery, information provision, staff expertise/complacency, symptoms, symptom management, identity, support networks, impact on life and living with a chronic condition. Conclusions and Implications: In this qualitative study participants have described the integral part voice difficulties play in their lived experience of LTS and reconstructive surgery. This is considered in the context of their clinical care and the need for individualised management and information provision throughout the course of their condition. The broader research literature relating to voice difficulties is explored with links made to people with LTS and recommendations made for future research into people living with LTS and dysphonia. What this paper adds: What is already known on this subject: Adults with laryngotracheal stenosis (LTS) experience voice changes as a result of their condition, and the surgeries necessary as a treatment. These changes can lead to altered pitch, vocal fatigue, loss of pitch range and loss of volume control. Although there are known psychosocial implications both to living with a chronic condition and voice difficulties there has been no research exploring this in adults with LTS, and there is minimal clinical guidance for speech and language therapists (SLTs) working with these patients. What this paper adds to existing knowledge: This research is the first study to explore the lived experience of adults with LTS who undergo reconstructive surgery, focusing on their voice concerns. This study demonstrates the multifactorial impacts of voice changes on all aspects of the lives of adults with LTS and the need for individualised information provision and clinical care to help support them. What are the potential or actual clinical implications of this work?: Adults with LTS want expert SLTs to facilitate their care and support them throughout their LTS journey alongside other support networks. They want to be carefully prepared for reconstructive surgery and given clear information about symptoms and management of their voice difficulties. This has led to the reorganisation of the care pathway at our centre, and the introduction of a patient‐led pretreatment session. [ABSTRACT FROM AUTHOR]

The article presents abstracts of medical research. They include "Health Care Transitions and Incident Feeding Tube Insertion Among Persons with Advanced Cognitive Impairment: Lost in Transition," "Changes in Quality of Life over Time among Older Persons with Advanced Illness" and "Patient and Caregiver Quality of Life in Alzheimer's Disease in Relation to Cognitive Severity."

Watchful waiting is a concept that is traditionally not associated with severe and enduring mental illness. This paper, however, boldly argues that the concept could be used as a ground‐breaking and accessible antidote to the perceived inequality experienced by black service users experiencing both mild and severe mental illnesses in England. The novel concepts proposed in this paper are not intended to be consensual, but rather uncompromising to provoke critical thinking in mental health practice. A conceptual framework for watchful waiting in mental health is suggested. [ABSTRACT FROM AUTHOR]

Objective. To determine whether e/Tablets (wireless tablet computers used in community oncology clinics to collect review of systems information at point of care) are feasible, acceptable, and valid for collecting research-quality data in academic oncology. Data/Setting. Primary/Duke Breast Cancer Clinic. Design. Pilot study enrolling sample of 66 breast cancer patients. Methods. Data were collected using paper- and e/Tablet-based surveys: Functional Assessment of Cancer Therapy General, Functional Assessment of Cancer Therapy-Breast, MD Anderson Symptom Inventory, Functional Assessment of Chronic Illness Therapy (FACIT), Self-Efficacy; and two questionnaires: feasibility, satisfaction. Principal Findings. Patients supported e/Tablets as: easy to read (94 percent), easy to respond to (98 percent), comfortable weight (87 percent). Generally, electronic responses validly reflected responses provided by standard paper data collection on nearly all subscales tested. Conclusions. e/Tablets offer a valid, feasible, acceptable method for collecting research-quality, patient-reported outcomes data in outpatient academic oncology. [ABSTRACT FROM AUTHOR]

This paper is based on the assumption that psychosocial services can add important mental and social dimensions to the traditional concepts of help and medicine. Peer support which has been established world-wide for people with haemophilia and their families is invaluable and irreplaceable. However the role of the professional psychosocial worker is underutilized in most countries, mostly because of lack of financial resources. This paper will argue that skilled workers can assist individuals and groups to reach their full potential in a variety of creative and non-threatening ways. Psychosocial workers have strict codes of conduct and requirements relating to accreditation to ensure accountability in their work. They can work in a variety of individual roles and have a wide range of individual mandates within work settings. [ABSTRACT FROM AUTHOR]

Issue Addressed: What are the effects of a brief intervention to promote physical activity (PA) delivered in a health care setting other than primary care? Methods: MEDLINE, EMBASE, CINAHL and PsycINFO were used to identify randomised controlled trials which evaluated the effect of brief interventions to increase PA, delivered in a health care setting. Review outcomes included subjectively or objectively measured PA, adherence to prescribed interventions, adverse events, health‐related quality of life, self‐efficacy and stage of change in relation to PA. Where possible, clinically homogenous studies were combined in a meta‐analysis. Results: Twenty‐five eligible papers were included. Brief counselling interventions were associated with increased PA compared to control, for both self‐reported PA (mean difference 34 minutes/week, 95% confidence intervals [95% CI] 9‐60 minutes), and pedometer (MD 1541 steps/day, 95% CI 433‐2649) at medium term follow up. Conclusion: Our findings suggest that some brief interventions to increase PA, delivered in the health care setting, are effective at increasing PA in the medium term. There is limited evidence for the long‐term efficacy of such interventions. The wide variation in types of interventions makes it difficult to determine which intervention features optimize outcomes. So What?: Brief counselling interventions delivered in a health care setting may support improved PA. Clinicians working in health care settings should consider the implementation of brief interventions to increase PA in vulnerable patient groups, including older adults and those with chronic illness. [ABSTRACT FROM AUTHOR]

Background: As the prevalence of paediatric dysphagia increases, the need for long‐term non‐oral feeding has also increased. Despite these developments, little is known about caregiver experiences of transitioning a child onto long‐term non‐oral feeds, and the factors which influence the process of decision‐making and the provision of consent to do so. This paper aims to explore these factors. Methods: Semi‐structured interviews were conducted with nine participants recruited from the multidisciplinary out‐patient non‐oral feeding clinic at a hospital. Interviews explored caregiver experiences of decision‐making and the process of providing consent when transitioning their child to non‐oral feeds, as well as the support structures available to the caregivers. Interviews were audio recorded and transcribed, then analyzed using thematic analysis (Braun & Clarke, 2013) and content analysis (Neuendorf, 2016). Results: Challenges to care and quality of life, access to information and culturally relevant counselling, and the involvement of family members and significant others emerged as prominent themes. Findings suggest that quality of life was the most common motivating factor for transitioning a child to non‐oral feeding methods. Several participants suggested that support and information sharing via digital platforms were both useful and effective. Implications: The findings highlight caregivers' needs for improved access to information and social support. The findings hold implications for training of healthcare providers working in similar contexts and for models of service delivery which ensure that family‐centred intervention can be delivered in culturally and contextually relevant ways. With widespread access to smartphones, counselling should include digital messaging as a way of providing support and information sharing. Future research should focus on the complexities of counselling and the process of informed consent in settings impacted by diverse cultural, contextual and linguistic barriers, as well as the potential value of mobile health (mhealth) in ensuring improved health outcomes. [ABSTRACT FROM AUTHOR]

Background: Opioids are one of the most prescribed treatments for chronic pain (CP). However, their long‐term use (>3 months) has been surrounded by controversy, due to loss of beneficial effects. Objective: To explore the experiences of people with chronic non‐malignant low back pain in Spain undergoing long‐term treatment with opioids. Design: Qualitative study. Setting and participants: We conducted 15 semi‐structured interviews at the Pain Clinic with persons taking opioid treatment. Methods: The interviews were analysed by qualitative content analysis as described by Graneheim and Lundman, and developed categories and themes discussed in light of a biomedicalization framework. Main results: We developed one overarching theme—Living with opioids: dependence and autonomy while seeking relief—and three categories: The long pathway to opioids due to the invisibility of pain; Opioids: from blind date to a long‐term relationship; and What opioids cannot fix. Discussion: The long and difficult road to find effective treatments was a fundamental part of coping with pain, involving long‐term relationships with the health system. This study reflects the benefits, and drawbacks of opioids, along with struggles to maintain autonomy and make decisions while undergoing long‐term treatment with opioids. The paper also highlights the consequences of pain in the economy, family and social life of patients. Conclusions: Patients' experiences should be considered to a greater extent by health‐care professionals when giving information about opioids and setting treatment goals. Greater consideration of the social determinants of health that affect CP experiences might lead to more effective solutions to CP. [ABSTRACT FROM AUTHOR]

Newborn infants are among those most severely affected by humanitarian crises. Aid organisations increasingly recognise the necessity to provide for the medical needs of newborns, however, this may generate distinctive ethical questions for those providing humanitarian medical care. Medical ethical approaches to neonatal care familiar in other settings may not be appropriate given the diversity and volatility of humanitarian disasters, and the extreme resource limitations commonly faced by humanitarian aid missions. In this paper, we first systematically review existing guidelines relating to the treatment and resuscitation of newborns in humanitarian crises, finding little substantive ethical guidance for those providing humanitarian healthcare. We next draw on paradigm cases and published literature to identify and describe some of the major ethical questions common to these settings. We divide these questions into quality of life considerations, allocation of limited resources, and conflicting cultural norms and values. We finally suggest some preliminary recommendations to guide ethical decision-making around resuscitation of newborns and withdrawal of treatment in humanitarian settings. [ABSTRACT FROM AUTHOR]

Quality-adjusted life year (QALY) models are widely used for economic evaluation in the health care sector. In the first part of the paper, we establish an overview of QALY models where health varies over time and provide a theoretical analysis of model identification and parameter estimation from time trade-off (TTO) and standard gamble (SG) scores. We investigate deterministic and probabilistic models and consider five different families of discounting functions in all. The second part of the paper discusses four issues recurrently debated in the literature. This discussion includes questioning the SG method as the gold standard for estimation of the health state index, re-examining the role of the constant-proportional trade-off condition, revisiting the problem of double discounting of QALYs, and suggesting that it is not a matter of choosing between TTO and SG procedures as the combination of these two can be used to disentangle risk aversion from discounting. We find that caution must be taken when drawing conclusions from models with chronic health states to situations where health varies over time. One notable difference is that in the former case, risk aversion may be indistinguishable from discounting. [ABSTRACT FROM AUTHOR]

Introduction: The adoption of remote healthcare methods has been accelerated by the COVID‐19 pandemic, but evidence suggests that some patients need additional support to engage remotely, potentially increasing health disparities if needs are not met. This study of COVID‐19 remote home monitoring services across England explores experiences of and engagement with the service across different patient groups. Methods: This was a mixed‐methods study with survey and interview data collected from 28 services across England between February and June 2021. Surveys were conducted with staff and patients and carers receiving the service. Interviews with staff service leads, patients and carers were conducted in 17 sites. Quantitative data were analysed using univariate and multivariate methods, and qualitative data were analysed using thematic analysis. Findings: Survey responses were received from 292 staff and 1069 patients and carers. Twenty‐three staff service leads, 59 patients and 3 carers were interviewed. Many service leads reported that they had considered inclusivity when adapting the service for their local population; strategies included widening the eligibility criteria, prioritising vulnerable groups and creating referral pathways. However, disparities were reported across patient groups in their experiences and engagement. Older patients reported the service to be less helpful (p = 0.004), were more likely to report a problem (p < 0.001) and had more difficulty in understanding information (p = 0.005). Health status (p = 0.004), ethnicity (p < 0.001), gender (p < 0.001) and employment (p = 0.007) were associated with differential engagement with monitoring, and minority ethnic groups reported more difficulty understanding service information (p = 0.001). Qualitative data found illness severity to be an important factor in the support required, and patients' living situation and social network affected whether they found the service reassuring. Conclusion: Addressing health disparities must be a key focus in the design and delivery of remote care. Services should be tailored to match the needs of their local population, encourage access through collaboration and referral pathways with other services and monitor their inclusiveness. Involving patients and staff in service design can illuminate the diversity of patients' needs and experiences of care. Patient or Public Contribution: The study team met with service user and public members of the BRACE PPI group and patient representatives from RSET in a series of workshops. Workshops informed study design, data collection tools, data interpretation and dissemination activities. Study documents (such as consent forms, topic guides, surveys and information sheets) were reviewed by PPI members; patient surveys and interview guides were piloted, and members also commented on the manuscript. [ABSTRACT FROM AUTHOR]

Intervention fidelity (IF) in behavioral interventions is complicated by their dynamic and interactive nature. Translation of the outcomes to practice may be diminished by lack of fidelity. The purpose of this paper is to describe a systematic, evidence‐based IF approach in a complex, multicomponent behavioral change study. The National Institutes of Health‐funded randomized controlled trial was designed to evaluate the effect of an adherence to exercise intervention. Two hundred forty‐six heart failure patients from two sites were enrolled. This description of the study‐specific standardized protocol, the data collection methods used, findings from the plan, and the discussion of the successes and challenges contributes to the advancement of IF implementation science. [ABSTRACT FROM AUTHOR]

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Summary: Hepatitis C virus contributes to substantial and growing mortality and morbidity. Fortunately, the advent of highly effective interferon‐free direct‐acting antiviral (DAA) medications and new diagnostic tests has the potential to dramatically alter the epidemiologic trajectory of hepatitis C, particularly for "hard‐to‐reach" populations. Treatment advances and cure will also likely alter the individual experience of living with hepatitis C. However, it is not yet known in what capacity. This paper provides an overview of the population‐level impact of DAA treatment, highlighting the need to further our understanding of the impact of treatment on behaviour, health and wellbeing through lived experience and more sensitive patient‐reported outcome measures. [ABSTRACT FROM AUTHOR]

Objective: A prospective, qualitative study was conducted to develop a patient‐reported outcome measure (PROM) for daily administration via electronic diary (eDiary) to assess the severity of nosebleeds in patients with hereditary hemorrhagic telangiectasia (HHT), in accordance with Food and Drug Administration (FDA) PROM guidance criteria. Methods: Three expert clinicians who treat patients with HHT provided input during instrument development, which comprised: 1) Peer‐reviewed literature and instrument review; 2) Development of draft Nosebleed Diary items; 3a) Three rounds of qualitative interviews (two with a paper‐based diary, one with an eDiary) with patients with documented severe epistaxis related to HHT, for concept elicitation and cognitive debriefing; 3b) Face validity and translatability assessment; 3c) Patient evaluation of the usability and acceptability of the eDiary device; and 4) Preparation of the final Nosebleed eDiary and conceptual framework. Results: No existing instruments were identified that evaluate HHT‐related nosebleed severity daily and meet FDA PROM guidance criteria. Frequency, duration, and/or speed of flow (i.e., intensity) were reported by most participants with HHT when asked to describe their nosebleed severity. The Nosebleed eDiary was refined based on 17 patient interviews, clinical expert input and the face validity and translatability assessment. The final four‐item eDiary was acceptable to patients with HHT. Conclusion: The Nosebleed eDiary is "fit for purpose" to assess the severity of HHT‐related nosebleeds, and has established face and content validity. Further adaptation may be required for use in mild or moderate HHT populations. Psychometric testing to evaluate construct validity and reliability are recommended next steps. Level of Evidence: 2c "Outcomes research" [ABSTRACT FROM AUTHOR]

This paper provides an introduction to utilities for statisticians working mainly in clinical research who have not had experience of health technology assessment work. Utility is the numeric valuation applied to a health state based on the preference of being in that state relative to perfect health. Utilities are often combined with survival data in health economic modelling to obtain quality-adjusted life years. There are several methods available for deriving the preference weights and the health states to which they are applied, and combining them to estimate utilities, and the clinical statistician has valuable skills that can be applied in ensuring the robustness of the trial design, data collection and analyses to obtain and handle this data. In addition to raising awareness of the subject and providing source references, the paper outlines the concepts and approaches around utilities using examples, discusses some of the key issues, and proposes areas where statisticians can collaborate with health economic colleagues to improve the quality of this important element of health technology assessment. Copyright © 2014 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Abstract: Rural stayers are often defined as people who have never left their rural home region or village. However, rural regions and villages also receive new inhabitants. This paper explores if and how newcomers become inhabitants who stay put. We do so by interviewing couples of newcomers who moved to a rural area of the Netherlands at the family formation life stage. All had moved between 5 and 10 years prior to this study. We view the process of becoming a stayer through the lens of getting attached to and identifying with the new home region. We adopt the concepts of 'elective belonging' and 'selective belonging' to explore the newcomers' actual experiences of rural place and, in turn, the ways rural newcomer families become stayers. We identify two types of stayers: children‐led and convinced stayers. Both envisage a re‐negotiation of staying or leaving at a later life stage (either the empty nest or old age stage). They all elected to belong to residential places in enchanted rural landscapes. But they also are selective in developing belonging to the rural. First, especially convinced stayers consciously adapt their behaviour in order to fit in the local community. Second, children‐led stayers seek only to become involved in child‐related activities. Third, both types of stayers ‘identify against’ certain elements of local culture and of real rural stayers. S/elective strategies of belonging are found to go hand‐in‐hand with processes of becoming a stayer. Moreover, s/elective belonging to the place leaves the option to 'leave in future'. [ABSTRACT FROM AUTHOR]

Abstract: Objectives: This paper addresses the prevalence and pattern of physical violence in the prehispanic society of Gran Canaria and discusses its link with the social structure and insular context in which that people lived. Materials and Methods: 347 prehispanic crania from Guayadeque Ravine (575–1415 AD) have been examined in order to determine the frequency, types, location, and timing of trauma. Results: Craniofacial injuries are present in 27.4% of the crania examined. Only 2% display perimortem trauma. Most of the injuries (84.3%) correspond to depressed blunt force trauma, with an ellipsoidal or circular shape. Most of these are in the anterior aspect of the cranium. Males are significantly more affected than females. Discussion: The aboriginal population of Gran Canaria show a high frequency of traumatic injuries to the skull compared to other archaeological groups. Their frequent location in the anterior aspect suggests regular face‐to‐face confrontations. However, the lethal injuries typically occurring in large‐scale combat are scarce. Practices such as ritualized combat, mentioned in ethnohistorical sources, would help to channel and mitigate inter‐group conflict. The predominance of depressed blunt force trauma is in accordance with the weapons used by those populations: hand‐thrown stones, clubs and sticks. The higher frequency in males indicates that they took part in direct violence more than females did. The hierarchical organization of their society may have led to frequent situations of conflict. The insular nature of a territory barely 1,500 m2 in size was a determining factor in competition for access to food resources, especially at times of climate crises or population growth. [ABSTRACT FROM AUTHOR]

Objectives: Cognitive stimulation therapy (CST) is one of the few non‐pharmacological interventions for people living with dementia shown to be effective and cost‐effective. What are the current and future cost and health‐related quality of life implications of scaling‐up CST to eligible new cases of dementia in England? Methods/design: Data from trials were combined with microsimulation and macrosimulation modelling to project future prevalence, needs and costs. Health and social costs, unpaid care costs and quality‐adjusted life years (QALYs) were compared with and without scaling‐up of CST and follow‐on maintenance CST (MCST). Results: Scaling‐up group CST requires year‐on‐year increases in expenditure (mainly on staff), but these would be partially offset by reductions in health and care costs. Unpaid care costs would increase. Scaling‐up MCST would also require additional expenditure, but without generating savings elsewhere. There would be improvements in general cognitive functioning and health‐related quality of life, summarised in terms of QALY gains. Cost per QALY for CST alone would increase from £12,596 in 2015 to £19,573 by 2040, which is below the threshold for cost‐effectiveness used by the National Institute for Health and Care Excellence (NICE). Cost per QALY for CST and MCST combined would grow from £19,883 in 2015 to £30,906 by 2040, making it less likely to be recommended by NICE on cost‐effectiveness grounds. Conclusions: Scaling‐up CST England for people with incident dementia can improve lives in an affordable, cost‐effective manner. Adding MCST also improves health‐related quality of life, but the economic evidence is less compelling. Key points: There are few evidence‐based non‐pharmacological interventions for people living with dementia. Cognitive stimulation therapy (CST) is both effective and cost‐effective, but current availability is constrainedThis paper reports the cost and health‐related quality of life implications of scaling‐up cognitive stimulation therapy to eligible people with dementia in England over a 25 year periodScaling‐up CST would improve general cognitive functioning and health‐related quality of life, but also increase costs for health and social care services, and for family and other unpaid carers. Adding maintenance CST would also improve health‐related quality of life, with even greater cost increasesThe higher costs of scaling‐up CST to the full eligible population over a 25 year period would be considered worth paying by reference to criteria used by the National Institute for Health and Care Excellence (NICE) in England. The economic evidence for adding maintenance CST is less compelling [ABSTRACT FROM AUTHOR]

Objectives: This is the protocol for an evidence and gap map. The objectives are as follows: The aim of this evidence and gap map is to map the available evidence on the effectiveness of social prescribing interventions addressing a non‐medical, health‐related social need for older adults in any setting. Specific objectives are as follows: 1.To identify existing evidence from primary studies and systematic reviews on the effects of community‐based interventions that address non‐medical, health‐related social needs of older adults to improve their health and wellbeing.2.To identify research evidence gaps for new high‐quality primary studies and systematic reviews.3.To highlight evidence of health equity considerations from included primary studies and systematic reviews. [ABSTRACT FROM AUTHOR]

Introduction: James Lind Alliance (JLA) Priority Setting Partnerships (PSPs) produce 'Top 10' lists of health and care research priorities through a structured, shared decision‐making process with patients or service users, carers and health or care professionals who identify questions that are most important to them. To date, over 150 PSPs in different areas of health and care have published research priorities. Some PSPs share similar priorities, which could be combined, promoted and addressed through collaborative research to increase value and reduce research waste. Aim: The aim of this study was to identify overarching themes common to JLA PSP priorities across different areas of health and care. Methods: Our analysis included 'Top 10' research priorities produced by UK‐based JLA PSPs between 2016 and 2020. The priorities were coded deductively by the Health Research Classification System (HRCS) health category and research activity. We then carried out online workshops with patients, service users and carers to generate new codes not already captured by this framework. Within each code, multistakeholder inductive thematic analysis was used to identify overarching themes, defined as encompassing priorities from three or more PSPs covering two or more health categories. We used codesign methods to produce an interactive tool for end users to navigate the overarching themes. Results: Five hundred and fifteen research priorities from 51 PSPs were included in our analysis. The priorities together encompassed 20 of 21 HRCS health categories, the most common being 'generic health relevance' (22%), 'mental health' (18%) and 'musculoskeletal' (14%). We identified 89 overarching themes and subthemes, which we organised into a hierarchy with seven top‐level themes: quality of life, caregivers and families, causes and prevention, screening and diagnosis, treatment and management, services and systems and social influences and impacts. Conclusion: There are many overarching themes common to research priorities across multiple areas of health and care. To facilitate new research and research funding, we have developed an interactive tool to help researchers, funders and patients or service users to explore these priority topics. This is freely available to download online. Patient or Public Contribution: Patients or service users and carers were involved throughout the study, including deciding the aims, designing the study, analysing priorities to identify themes, interpreting and reporting the findings. [ABSTRACT FROM AUTHOR]

Background: Following stroke, a sense of well‐being is critical for quality of life. However, people living with stroke, and health professionals, suggest that well‐being is not sufficiently addressed within stroke services, contributing to persistent unmet needs. Knowing that systems and structures shape clinical practice, this study sought to understand how health professionals address well‐being, and to examine how the practice context influences care practice. Methods: Underpinned by Interpretive Description methodology, we interviewed 28 health professionals across multiple disciplines working in stroke services (acute and rehabilitation) throughout New Zealand. Data were analysed using applied tension analysis. Results: Health professionals are managing multiple lines of work in stroke care: biomedical work of investigation, intervention and prevention; clinical work of assessment, monitoring and treatment; and moving people through service. While participants reported working to support well‐being, this could be deprioritised amidst the time‐oriented pressures of the other lines of work that were privileged within services, rendering it unsupported and invisible. Conclusion: Stroke care is shaped by biomedical and organisational imperatives that privilege physical recovery and patient throughput. Health professionals are not provided with the knowledge, skills, time or culture of care that enable them to privilege well‐being within their work. This has implications for the well‐being of people with stroke, and the well‐being of health professionals. In making these discourses and culture visible, and tracing how these impact on clinical practice, we hope to provide insight into why well‐being work remains other to the 'core' work of stroke, and what needs to be considered if stroke services are to better support people's well‐being. Patient or Public Contributions: People with stroke, family members and people who provide support to people with stroke, and health professionals set priorities for this research. They advised on study conduct and have provided feedback on wider findings from the research. [ABSTRACT FROM AUTHOR]

Over recent years, an emphasis has emerged in the UK and international policy documents, over the involvement of people in the delivery of health care. However, evaluations of health services still largely rest on outcome measures that reflect professional concerns. As new health services are being developed, new patient-centred outcome measures are needed to evaluate them. This paper aims at exploring the possibility of individual quality of life as an outcome measure for health services. As a first step, it aims to elucidate the relationship of functional outcome measures to the Schedule for the Evaluation of Individual Quality of Life (SEIQoL) in groups of people whose age or medical diagnosis serve as the basis for health service design. Its objectives are to study the relation of SEIQoL scores and life areas to functional status in an older population and in a group of people with chronic obstructive pulmonary disease (COPD). Older people selected their health most frequently as one of the most important areas in their life (9.9%, vs. 8.6% for people with COPD) and were more satisfied with it ( U = 2512, p = 0.007). People's health status did not impact on the way they defined their quality of life, but on their level of satisfaction with discrete life areas. The weights attributed to health were significantly negatively correlated to people's overall quality of life score in the overall sample ( ρ = −0.34, p < 0.001). In the light of recent national and international policy documents advocating for the development of new, more person-centred health services, our results support the proposition of the authors of SEIQoL, that individual quality of life measures have the potential to bring a significant contribution to the evaluation of health services. [ABSTRACT FROM AUTHOR]

Appropriate information, offered at the right time, has been recognised as a key factor in enabling patients to cope with a diagnosis of cancer. This paper describes the sources of information that are currently being utilised by patients and the perceived quality of these sources. A sample of 430 patients were asked to indicate on a series of Likert scales their views of 19 commonly available sources of information. The most frequently cited sources of information were the hospital consultant, General Practitioner, chemotherapy/radiotherapy staff, ward staff and family/friends. It is of interest that the internet was only used by under 10% of patients. The source that scored the highest in terms of quality of information was the specialist/Macmillan nurses. GPs and written material scored poorly in terms of quality of information. The relationship between information and sources, gender, age and diagnosis was also examined. Age was found to have the greatest influence on the perceived quality of information and the frequency of its use. The paper concludes that there is a need for improvement in the provision of information by the primary health care team. The issue of the quality of written information available for patients requires further investigation to identify the type of written material used. Furthermore, family/friends should be recognised as important sources of information to many patients. Finally, there is a need for more specialist nurses, as they are clearly the preferred source of information for the majority of cancer patients. Copyright © 2002 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Background The evaluation of health related quality of life (HRQOL) is essential for a full assessment of the influence of an illness on patients' lives. The aim of this paper is to critically appraise and compare the measurement properties of HRQOL questionnaires studied in haemophilia. Methods Bibliographic databases (Embase, Medline, Cinahl and PsycInfo) were searched for articles evaluating measurement properties of HRQOL questionnaires in haemophilia. Articles were excluded that did not report HRQOL measurement properties, or when <50% of the study population had haemophilia. The methodological quality of the selected studies was evaluated using the COSMIN checklist. The measurement properties of the HRQL questionnaires were rated as 'positive', 'indeterminate' or 'negative', accompanied by levels of evidence. Results The search resulted in 1597 unique hits, of which 22 studies were included. These articles evaluated three questionnaires for children (CHO-KLAT, Haemo-QoL and one unnamed measure) and five for adults (Hemofilia-QoL, Haemophilia Well-Being Index, HAEMO-QoL-A, Haem-A-QoL, and SF-36). The CHO-KLAT was the paediatric measure that showed the strongest measurement properties in high-quality studies. The Haemophilia Well-Being Index and HAEMO-QoL-A performed best among the adult measures. None of the studies reported measurement error and responsiveness. Conclusion Our findings suggest that there is no need for new disease-specific HRQOL questionnaires for haemophilia, but rather that additional research is necessary to document the measurement properties of the currently available questionnaires, specifically focusing on the structural validity, measurement error and responsiveness of these questionnaires. [ABSTRACT FROM AUTHOR]

This paper is a statement of the American Geriatrics Society's (AGS) core policy priorities and the Society's positions on federal programs and policies that support older Americans as articulated to the new administration. Among the AGS priorities discussed in this paper are health reform, Medicare, and Medicaid. The AGS is committed to leveraging its expertise to inform regulatory and legislative policy proposals. [ABSTRACT FROM AUTHOR]

Rationale: Much is written about "multimorbidity" as it is a difficult problem for health systems, as it reflects a complex phenomenon unique to each individual health journey and health service context. This paper proposes the adoption of 2 constructs or knowledge streams into mainstream "multimorbidity" care which are arguably most important to person‐centered care—personal health perceptions and resilience. Analysis: "Multimorbidity" is the manifestation of multiple nonlinear physical, psychosocial, and environmental phenomena in an individual health journey. Multimorbidity encompasses very stable states for the most part together with highly unstable phases that are difficult to manage. Averting or controlling the underlying loss of resilience in instability can be challenging without early warning signals pointing towards tipping points. Monitoring resilience and early warning signals for tipping points is new to health care. Yet what should we monitor in the complexity of multimorbidity? There are multiple and competing health service features and biometrics that can be measured. However, an expanding of literature endorses importance of simply asking a person about their self‐rated health in order to provide predictions of their resilience and survival. Interoception, exemplified as self‐rated health, arises from internal neurocognitive self‐monitoring functions of different internal and external phenomena. Interoception is being to be recognized as predictors and barometers of resilience and survival. Conclusions: Two phenomena of human systems—interoception and resilience—can guide care in the complex nature of multimorbidity in unstable health journeys and should be incorporated into clinical practice. [ABSTRACT FROM AUTHOR]

Traditionally health care outcomes have been evaluated by measuring immediate and long-term survival. This paper demonstrates the importance of quality of life as an alternative outcome indicator by considering two dimensions of quality of life and how they affect patients following liver transplantation. These two dimensions are physical recovery and functional recovery and they are considered by analysing the literature exploring quality of life following liver transplantation. Physical recovery is be subdivided into sleep, pain and mobility and functional recovery is subdivided into occupational rehabilitation and domestic rehabilitation. [ABSTRACT FROM AUTHOR]

This paper is about the complexities of understanding the medical technology scene. A variety of attacks and defences on and of this scene - largely simplistic and encapsulated in catchwords and phrases like 'dehumanization,' 'rising hospital costs,' 'quality of life' - have gained currency. There is a need to recognize the complexities stemming from medical technology, but also to find explanatory patterns. This paper uses the labor and delivery ward and the intensive care nursery (ICN) in the service of illuminating these complexities and patterns. [ABSTRACT FROM AUTHOR]

The article offers the author's insights on papers which discuss prices, information, and healthy lifestyle preferences of adults. The author says that the first article has used data from the National Longitudinal Survey of Youth 1979 group (NLSY79) to evaluate how lifestyle prices and factors of health care and food influence three behavioral variables. He notes that the second article the Panel Study of Income Dynamics to test how food availability and prices affect adult obesity in the U.S.

Chronic obstructive pulmonary disease ( COPD) is a progressive illness that changes the lives of patients and their spouses dramatically. The aim of this paper is to show how spouses of COPD patients integrate their tasks as informal carers with their role as spouses and the tensions and challenges involved in this. The study draws on qualitative interviews with spouses of COPD patients, recruited from the patient pool of ambulatory pulmonary services of two hospitals in Oslo, Norway. The spouses described their great efforts to re-establish normality and continuity in their everyday lives. Accomplishing this was a delicate process because they faced several dilemmas in this work. They balanced the need to sustain the independence and integrity of both parties against the need to ensure safety and deal with the progression of the illness. We propose 'biographical we' as a concept that can highlight the great effort spouses put into establishing a sense of continuity in their lives. In times when healthcare policy involves mobilising informal caregiving resources, an awareness of the complexity of caregiving relationships is crucial when developing appropriate support for informal carers. [ABSTRACT FROM AUTHOR]

Background: Social isolation and loneliness are more common in older adults and are associated with a serious impact on their well‐being, mental health, physical health, and longevity. They are a public health concern highlighted by the COVID‐19 pandemic restrictions, hence the need for digital technology tools to enable remotely delivered interventions to alleviate the impact of social isolation and loneliness during the COVID‐19 restrictions. Objectives: To map available evidence on the effects of digital interventions to mitigate social isolation and/or loneliness in older adults in all settings except hospital settings. Search Methods: We searched the following databases from inception to May 16, 2021, with no language restrictions. Ovid MEDLINE, Embase, APA PsycInfo via Ovid, CINAHL via EBSCO, Web of Science via Clarivate, ProQuest (all databases), International Bibliography of the Social Sciences (IBSS) via ProQuest, EBSCO (all databases except CINAHL), Global Index Medicus, and Epistemonikos. Selection Criteria: Titles and abstracts and full text of potentially eligible articles were independently screened in duplicate following the eligibility criteria. Data Collection and Analysis: We developed and pilot tested a data extraction code set in Eppi‐Reviewer and data were individually extracted and coded based on an intervention‐outcome framework which was also used to define the dimensions of the evidence and gap map. Main Results: We included 200 articles (103 primary studies and 97 systematic reviews) that assessed the effects of digital interventions to reduce social isolation and/or loneliness in older adults. Most of the systematic reviews (72%) were classified as critically low quality, only 2% as high quality and 25% were published since the COVID‐19 pandemic. The evidence is unevenly distributed with clusters predominantly in high‐income countries and none in low‐income countries. The most common interventions identified are digital interventions to enhance social interactions with family and friends and the community via videoconferencing and telephone calls. Digital interventions to enhance social support, particularly socially assistive robots, and virtual pets were also common. Most interventions focused on reducing loneliness and depression and improving quality of life of older adults. Major gaps were identified in community level outcomes and process indicators. No included studies or reviews assessed affordability or digital divide although the value of accessibility and barriers caused by digital divide were discussed in three primary studies and three reviews. Adverse effects were reported in only two studies and six reviews. No study or review included participants from the LGBTQIA2S+ community and only one study restricted participants to 80 years and older. Very few described how at‐risk populations were recruited or conducted any equity analysis to assess differences in effects for populations experiencing inequities across PROGRESS‐Plus categories. Authors' Conclusions: The restrictions placed on people during the pandemic have shone a spotlight onto social isolation and loneliness, particularly for older adults. This evidence and gap map shows available evidence on the effectiveness of digital interventions for reducing social isolation or loneliness in older adults. Although the evidence is relatively large and recent, it is unevenly distributed and there is need for more high‐quality research. This map can guide researchers and funders to consider areas of major gaps as priorities for further research. [ABSTRACT FROM AUTHOR]

Background: Sjögren's ('SHOW‐grins') is a chronic debilitating autoimmune disease characterised by dry eyes and dry mouth, secondary to reduced exocrine function of both the lacrimal and salivary glands. The persistent, severe and serious systemic complications of Sjögren's are poorly understood and often unappreciated, resulting in significant morbidity and treatment burden. This study aimed to explore the experiences of those living with Sjögren's, specifically access to healthcare and attitude towards telemedicine. Additionally, we sought to collect information regarding the impact of the pandemic on their quality of life (QoL). Methods: One hundred and ninety‐four individuals attended an Irish Sjögren's Webinar. Attendees were invited to participate in two online surveys after the webinar. The first survey gathered information related to demographics, disease and experiences during the COVID‐19 pandemic. A combination of bespoke items and validated questionnaires (EULAR Sjögren's Syndrome Patient Reported Index [ESSPRI], COVID‐19 Impact on Quality of Life [COV19‐QoL]) was used. The second survey consisted of a shortened Telehealth Usability Questionnaire. Both were prepared in collaboration with a patient advocate. Results: Survey 1: n = 76; response rate = 39.2%. Thirty‐one respondents (41.4%) to survey 1 reported a delay of ≥5 years between the onset of symptoms and diagnosis. Dry mouth was the most common symptom experienced (76.8%, n = 63), followed by dry eye (74.4%, n = 61), fatigue (57.3%, n = 47) and joint pain (53.7%, n = 44), but a range of other symptoms were also reported. COV19‐QoL results indicated that the pandemic had a detrimental effect on participants' overall QoL (4.0 ± 1.0) and physical health (4.0 ± 0.8) in particular. COV19‐QoL and ESSPRI scores were moderately correlated (0.36, p =.002). Over 70% of respondents had a medical appointment cancelled, delayed or rescheduled (n = 60). Survey 2: n = 57; response rate = 29.4%. Those that had interacted with telemedicine reported largely positive experiences with the virtual model. Conclusion: Clinicians should be aware of the range of symptoms experienced by patients with Sjögren's beyond those of sicca (dry eye and dry mouth) and fatigue. COVID‐19 has negatively influenced the self‐reported health and well‐being of those with Sjögren's, particularly those with higher symptom scores. It is vital that optimised telemedicine models are implemented to ensure continuity in the provision of healthcare for those with chronic illness such as Sjögren's and in preparation for possible future pandemics. Patient or Public Contribution: A group of people living with Sjögren's co‐designed the structure and content of the webinar where the survey was shared. A public and patient involvement (PPI) contributor also collaborated in the selection of questionnaires used in the study, ensuring that the questions asked would best reflect the priorities of patients. They contributed to the writing of this manuscript as co‐authors. Additionally, the research team and Sjögren's patients who contributed to this work have gone on to establish Sjögren's Research Ireland, a collaboration between patient advocates, researchers and PPI facilitators. [ABSTRACT FROM AUTHOR]

Background Patient or person centred care is widely accepted as the philosophy and practice that underpins quality care. An examination of the Australian National Chronic Disease Strategy and literature in the field highlights assumptions about the self-manager as patient and a focus on clinical settings. Objective and Conclusion This paper considers patient or person centred care in the light of empowerment as it is understood in the health promotion charters first established in Alma Ata in 1977. We argue that patient or person centred care can be reconfigured within a social justice and rights framework and that doing so supports the creation of conditions for well-being in the broader context, one that impacts strongly on individuals. These arguments have broader implications for the practice of patient centred care as it occurs between patient and health professional and for creating shared responsibility for management of the self. It also has implications for those who manage their health outside of the health sector. [ABSTRACT FROM AUTHOR]

SUMMARY Background Many tools are used to examine the Quality of Life (QOL) of patients with kidney disease, but little is known about how culturally relevant they are and why one should utilise one tool over another. As part of a larger study on the QOL of dialysis patients in United Arab Emirates, the cultural relevance of two tools (SF-36 and the QOL Index) was examined. This paper suggests a model to establish cultural relevance of QOL tools. Method A descriptive comparative survey design using a mixed method design was used in 2007 to study the QOL of 161 patients on dialysis and 350 people from the community. The cultural relevance of each tool was assessed by (i) examining missed questions, (ii) asking respondents about the cultural relevance of each tool, (iii) asking respondents what questions could be added or deleted to make the tools more culturally relevant and (iv) asking respondents to identify the factors that might contribute to their QOL. Results Of respondents, 94.7% from the dialysis sample and 90.4% from the community sample considered both tools culturally relevant. The QOL Index tool had more missing data. Many of the themes generated from the analysis of the qualitative data were addressed by the subscales of both tools. Themes not addressed by either tool were concerned with values, safety and country. Conclusion Cultural adaptation of QOL tools needs to follow well-established guidelines. The target population should be involved in establishing the cultural relevance of QOL tools. [ABSTRACT FROM AUTHOR]

Objective Cancer survivors (CSs) are at risk of developing late effects (LEs) associated with the disease and its treatment. This paper compares the health status, care needs and use of health services by CSs with LEs and CSs without LEs. Methods Cancer survivors ( n = 613) were identified via the Northern Ireland Cancer Registry and invited to participate in a postal survey that was administered by their general practitioner. The survey assessed self-reported LEs, health status, health service use and unmet care needs. A total of 289 (47%) CSs responded to the survey, and 93% of respondents completed a LEs scale. Results Forty-one per cent (111/269) of CSs reported LEs. Survivors without LEs and survivors with LEs were comparable in terms of age and gender. The LEs group reported a significantly greater number of co-morbidities, lower physical health and mental health scores, greater overall health service use and more unmet needs. Unadjusted logistic regression analysis found that cancer site, time since diagnosis and treatment were significantly associated with reporting of LEs. CSs who received combination therapies compared with CSs who received single treatments were over two and a half times more likely to report LEs (OR = 2.63, 95% CI = 1.32-5.25) after controlling for all other variables. Conclusions The CS population with LEs comprises a particularly vulnerable group of survivors who have multiple health care problems and needs and who require tailored care plans that take account of LEs and their impact on health-related quality of life. Copyright © 2013 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Management options for metastatic castrate-resistant prostate cancer ( mCRPC) have increased in recent years resulting in more men living for longer with the disease. The implications for patients and health care services are considered through an examination of the literature in relation to the physical and psychosocial effects of mCRPC and its treatment, looking at quality of life (QoL) and service delivery implications. QoL in advanced prostate cancer has been well documented in the literature but studies involving those with mCRPC are sparse. There is a lack of evidence regarding psychological distress and effective psychological interventions for men with mCRPC. There is a need for research to understand the impact of new treatments on QoL of men and their partners, to establish effective psychological interventions for men with mCRPC and to quantify the increased demand for services with prolonged survival. The purpose of this discussion paper is to examine the physical and psychosocial effects of both disease and treatment, alongside QoL issues and consideration of the implications for service delivery. [ABSTRACT FROM AUTHOR]

Transplantation is the treatment of choice for patients with end-stage renal disease. Despite complete or partial restoration of renal function, many recipients after transplant continue to self-identify as disabled. It is a designation required for federal healthcare assistance pre-transplant, but in some cases, post-transplantation, the designation is misapplied. When kidney recipients bear the label of disabled, regardless if the disability is real or perceived, they are less likely to participate in work and social activities. Although transplantation improves quality of life, for many recipients the designation of disability can extend an unintended, negative impact. It is well recognized that kidney recipients return to employment, education, and social activities after transplantation. However, there is a portion of the recipient population that can work but chooses not to engage. A large part of the phenomenon is related to disability status and the federal financing of kidney disease. This paper summarizes the history of the relationship between disability and kidney transplantation, the potential pitfalls associated with the relationship, and evidence-based strategies designed to mitigate or lead to mitigation of the unfavorable effects associated with misappropriated, perceived disability after kidney transplantation. [ABSTRACT FROM AUTHOR]

Diabet. Med. 29, 293-302 (2012) Abstract As a common side effect of insulin treatment for diabetes, hypoglycaemia is a constant threat and can have far-reaching and potentially devastating consequences, including immediate physical injury as well as more pervasive cognitive, behavioural and emotional effects. Moreover, as a significant limiting factor in achieving optimal glycaemic control, exposure to hypoglycaemia can influence diabetes self-management. Although hypoglycaemia is known to occur in Type 2 diabetes, its morbidity and impact on the individual are not well recognized. The aim of the current review is to examine published evidence to achieve a synthesis of the scope and significance of the potential detriment caused by hypoglycaemia to individuals with Type 2 diabetes. The implications of these observations for treatment and research have also been considered. A narrative review was performed of empirical papers published in English since 1966, reporting the effect of hypoglycaemia on quality of life and related outcomes (including generic and diabetes-specific quality of life, emotional well-being and health utilities) in Type 2 diabetes. Research demonstrates the potential impact of hypoglycaemia on the lives of people with Type 2 diabetes, from an association with depressive symptoms and heightened anxiety, to impairment of the ability to drive, work and function in ways that are important for quality of life. Few studies consider hypoglycaemia as an explanatory variable in combination with quality of life or related primary endpoints. As a consequence, there is a pressing need for high-quality research into the overall impact of hypoglycaemia on the lives of people with Type 2 diabetes. [ABSTRACT FROM AUTHOR]

Nocturia is currently defined by the International Continence Society (ICS) as the complaint that an individual has to wake at night one or more times to void. It is, however, an underreported, understudied, and infrequently recognized problem in adults. Many factors may contribute to nocturia which are treatable, yet patients do not seek care or the condition may not be identified by providers. This paper aims to help healthcare providers better serve patients who are experiencing nocturia by summarizing current research, clinical approaches, and treatment options. The results of the conference provide a balanced evaluation of the full treatment armamentarium capable of meeting the needs of patients with the manifold causes of nocturia such as nocturnal polyuria, overactive bladder, or benign prostatic hyperplasia. [ABSTRACT FROM AUTHOR]

Orofacial clefts are common birth defects that may impose a large burden on the health, quality of life, and socioeconomic well-being of affected individuals and families. They also result in significant healthcare use and costs. Understanding the impact of orofacial clefts on these outcomes is important for identifying unmet needs and developing public policies to reduce the burden of orofacial clefts at the individual, family and societal levels. This paper reviews and summarizes the main findings of recent studies that have evaluated the impact of orofacial clefts on these outcomes, with a focus on quality of life, socioeconomic outcomes, long-term health, and healthcare use and costs. Several studies identify an increased burden of orofacial clefts on these outcomes, but some of the findings are inconsistent. A summary of the primary limitations of the studies in this area is presented, along with recommendations and directions for future research. [ABSTRACT FROM AUTHOR]

Rationale The use of generic measures of health-related quality of life enables cost effectiveness comparisons of different health care interventions to be made. Nevertheless, there exists a concern that generic instruments may be insufficiently sensitive to detect the differences or changes in outcome identified by condition-specific instruments. This paper compares the psychometric properties of the EQ-5D generic instrument with a widely used specific measure of distress, the Hospital Anxiety and Depression Scale (HADS). Method The analysis was based on data obtained from a large sample of women ( n = 3119) with low-grade cervical cytological abnormalities detected at routine screening. These women completed EQ-5D and HADS questionnaires at recruitment and at 12 months thereafter. We examined the strength of association between HADS-determined severity of distress and EQ-5D scores at recruitment and between changes in severity and in scores over time. Results A higher likelihood of HADS-identified anxiety and/or depression was associated with significantly lower EQ-5D index and visual analogue scores. Over time, the EQ-5D score rose significantly when the likelihood of an individual representing a HADS-defined anxiety and/or depression case decreased. Conclusion We conclude that the EQ-5D has shown itself to be responsive to differing degrees of HADS-assessed distress, although generalization beyond the UK context requires further investigation. [ABSTRACT FROM AUTHOR]

Aim. This paper is a report of a study exploring the impact of neuropathic pain on family, social and working relationships among patients at a pain clinic serving a large urban area. Background. Neuropathic pain is a particularly distressing type of chronic pain which is extremely difficult to manage successfully. It produces a range of unpleasant symptoms and adversely affects patients' quality of life, but little is known about its personal impact. Method. A descriptive and exploratory approach was used and 10 participants participated in three focus groups in 2005. Because of the low response rate of 20% from the initial sample, a second sample of 16 patients was invited to participate. However, only one person responded and therefore it was not possible to convene an additional group. Findings. The unpleasant and bizarre nature of neuropathic pain underpinned much of its impact in terms of respondents' difficulties in maintaining a range of relationships. For closer relationships, key difficulties centred on the reduction in quality and/or number of personal relationships. For more distant relationships and those with professionals, frustration at the invisibility of their pain and their own failure to communicate symptoms and its consequences were central. Conclusion. More extensive work is needed to improve our understanding of how neuropathic pain is experienced, how it affects close and more distant kinds of relationships, and how healthcare professionals might best support people with persistent neuropathic pain to maintain personal and social relationships, and to communicate their pain effectively. [ABSTRACT FROM AUTHOR]

Objectives: The Early Childhood Oral Health Impact Scale (ECOHIS) is a recently developed oral health-related quality of life instrument designed to assess the impact of oral health problems in 0–5-year-old children. It has previously been validated as discriminative instrument. The goal of this study was to investigate the responsiveness to change of the ECOHIS. Methods: Data were collected from a convenience sample of 101 parents of 0–5-year-old children attending a hospital dental clinic for dental treatment. The ECOHIS was completed by parents prior to dental treatment and 2 weeks later. Subjects were also asked a global transition judgement concerning change between the second and first completion of the ECOHIS instrument. Responsiveness to change of the ECOHIS was analysed through: (i) a comparison of ECOHIS change scores with a global transition judgment by study subjects; (ii) an assessment of the statistical significance of within-group change in scores over time for groups reporting improvement, stability and deterioration; (iii) an estimation of the ECOHIS’s sensitivity; and (iv) an investigation the effect size of the ECOHIS. Results: Of the 101 subjects recruited, 94 had full datasets. Their data were used for the analyses reported in this paper. Pre- and post-treatment distributions of ECOHIS scores were strongly distributed towards no oral health impacts. Among the 94 subjects, 51.1% reported improvement, 42.6% reported no change and 6.4% reported deterioration following treatment, using the global transition judgement. The mean ECOHIS change scores for these three groups were −0/9, +0.7 and +6.5 respectively, although none of the within-group changes were statistically significant. The effect size for those reporting improvement was small (0.15) but for those reporting deterioration was moderate-to-large (0.69). Sensitivity ranged from 0.61–0.79 depending on the size of the cut-off point, with a change of 3 points demonstrating the best sensitivity to false positive ratio (0.79 versus 0.41 respectively). Conclusion: In this sample with low levels of problems, the ECOHIS has demonstrated some limited ability to respond to change. Further work in a larger sample with higher levels of problems is needed to investigate the instrument’s ability to respond to change when it has occurred. [ABSTRACT FROM AUTHOR]

PURPOSE. This paper aims to examine the collaborative negotiation process, an interventional approach being tested at a primary-care school-based clinic to help low-income families improve lifestyle and weight-related health indicators in their overweight children. DESIGN AND METHODS. Process evaluation of the intervention employed in an ongoing longitudinal pilot study. Descriptive analysis is from structured field notes and audiotapes of parent–child–provider interactions during intervention visits (n=   111). RESULTS. Activity levels and eating patterns were families’ main concerns in managing their children's weight. Challenges and facilitators of implementing health plans were explored. PRACTICE IMPLICATIONS. The collaborative negotiation intervention provides a family-centered approach to engage families in management of children's weight. [ABSTRACT FROM AUTHOR]