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Objectives: To compare data based on computerized and paper versions of health status questionnaires (HSQs) for sampling patient-reported outcomes (PROs) in patients with fibromyalgia (FM). In addition, to examine associations between patient characteristics (age, education, computer experience) and differences between versions. Finally, to evaluate the acceptability of computer-based questionnaires among patients with FM.Method: The study population comprised female patients diagnosed with FM. All patients completed six HSQs: the Fibromyalgia Impact Questionnaire (FIQ), the Major Depression Inventory (MDI), the 36-item Short Form Health Survey (SF-36), the painDETECT questionnaire (PDQ), the Coping Strategies Questionnaire (CSQ), and the Generalized Anxiety Disorder Self-Assessment Questionnaire (GAD-10), both on paper and using a touch screen. One HSQ was tested at a time in a repeated randomized cross-over design. The two versions were completed with a 5-min interval and between each HSQ the participants had a 5-min break. Means, mean differences with 95% confidence intervals (CIs), medians, median differences, and intraclass correlation coefficients (ICCs) were calculated for all HSQs, including relevant subscales. Associations between patient characteristics and differences between versions were explored using Spearman's correlation coefficients.Results: Twenty women, mean age 48.4 years, participated in the study. Except for one item, ICCs between touch-screen and paper versions of the HSQs examined indicated acceptable agreement (ICC = 0.71-0.99). Overall, mean and median differences revealed no differences between versions. No significant associations were observed for patient characteristics. None of the participants preferred paper questionnaires over computerized versions.Conclusions: The computerized HSQs using a touch screen gave comparable results to answers given on paper and were generally preferred by the participants. [ABSTRACT FROM AUTHOR]

This paper reports the impact of a major life event–death–on the physical, psychological and social well-being of the deceased’s close friends. We utilised data from a large longitudinal survey covering a period of 14 years (2002–2015) consisting a cohort of 26,515 individuals in Australia, of whom 9,586 had experienced the death of at least one close friend. This longitudinal cohort dataset comprises responses to the SF-36 (health related quality of life measure) and allowed for analysis of the short and longer-term impacts of bereavement. In order to manage the heterogeneity of the socio-demographics of respondents who did/not experience a death event, we use a new and robust approach known as the Entropy Balancing method to construct a set of weights applied to the bereaved group and the control group (the group that did not experience death). This approach enables us to match the two groups so that the distribution of socio-demographic variables between the two groups are balanced. These variables included gender, age, marital status, ethnicity, personality traits, religion, relative socio-economic disadvantage, economic resources, and education and occupation and where they resided. The data show, for the first time, a range of negative and enduring consequences experienced by people following the death of a close friend. Significant adverse physical and psychological well-being, poorer mental health and social functioning occur up to four years following bereavement. Bereaved females experienced a sharper fall in vitality, suffered greater deterioration in mental health, impaired emotional and social functioning than the male counterparts up to four years after the death. The data show that the level of social connectedness plays an important role in bereavement outcomes. Specifically, we found that less socially active respondents experienced a longer deterioration in physical and psychological health. Finally, we found evidence that the death of a close friend lowered the respondent’s satisfaction with their health. Since death of friends is a universal phenomenon, we conclude the paper by reflecting on the need to recognise the death of a close friend as a substantial experience, and to offer support and services to address this disenfranchised grief. Recognising bereaved friends as a group experiencing adverse outcomes can be used internationally to prompt health and psychological services to assist this specific group, noting that there may be substantial longevity to the negative sequelae of the death of a friend. Facilitating bereaved people’s support networks may be a fruitful approach to minimising these negative outcomes. [ABSTRACT FROM AUTHOR]

Background: Impaired physical function due to chemotherapy-induced peripheral neuropathy (CIPN) symptoms may lead to diminished quality of life. However, even with the knowledge of the effects of CIPN on physical function, clinicians infrequently assess and manage CIPN. Interventions that prioritize the early identification of CIPN to provide prompt treatment may reduce the impact of CIPN on physical function. The purpose of this paper is to compare self-reported physical function in individuals receiving neurotoxic chemotherapy between Electronic Symptom Assessment-Cancer (ESRA-C) intervention group (e.g., opportunity for symptom screening, self-care recommendations, communication coaching, and symptom tracking) and control group participants (i.e., electronic assessment alone). Secondary outcomes include pain intensity, sensory/motor CIPN, depression, fatigue, and insomnia.Methods: The data used in this paper are a subset of a randomized controlled trial that examined the impact of the ESRA-C intervention on symptom distress in individuals receiving cancer treatment. Since the interest in this analysis is on the effects of neurotoxic chemotherapy on physical function, subjects were included if they received platinum and/or taxane-based chemotherapy and completed the baseline and end-of-treatment measures. Participants completed standardized questionnaires of physical function, CIPN, fatigue, depression, pain intensity, and insomnia prior to treatment, 3-6 weeks after treatment initiation, and after the completion of treatment. Changes in mean scores are compared between groups using linear mixed models adjusting for age.Results: Intervention group participants reported significantly less reduction in physical functioning (baseline: 87.4/100; end-of-treatment: 84.5/100) relative to the control (baseline: 90.2/100; end-of-treatment: 81.8/100) (p = 0.011). For secondary measures, significantly less depression (p = 0.005) was observed in the intervention group as compared to the control, but otherwise, there were no between-group differences. Among participants who received high cumulative doses of neurotoxic chemotherapy, the intervention group reported significantly less severe sensory (p = 0.007) and motor CIPN (p = 0.039) relative to the control.Conclusion: Use of the ESRA-C intervention led to less reduction in physical function in comparison to the control in individuals receiving neurotoxic chemotherapy. Further research is needed to confirm our findings and to identify how electronic symptom assessment technology may mediate physical function preservation.Trial Registration: ClinicalTrials.Gov NCT00852852 . Registered 27 February 2009. [ABSTRACT FROM AUTHOR]

Exploring children and young people’s own understanding of experiences with abuse and maltreatment is an important part of taking their right to participation seriously. By applying a narrative theoretical framework, this paper explores and analyzes young people’s and young adults’ stories of being the target of violence and abuse as children, and their meaning making and definition of such experiences, then and now. The overall findings show the participants’ varied and nuanced perceptions of what constitutes violence were much dependent on contextual, relational, and temporal aspects. Furthermore, many participants reported psychological and emotional abuse and neglect to be the most hurtful of their experiences of maltreatment. Finally, the analysis sheds light on how responses to abuse and maltreatment change and depend on the children and young people’s definition of their situation through time and context. The paper contributes with qualitative knowledge to the social work research and practice field, on how abuse and maltreatment unfold in and affect children and young people’s lives seen from their own points of view. [ABSTRACT FROM AUTHOR]

Aim: To systematically review literature on health-related quality of life (HRQoL) of children and adolescents (≤18yo) with cerebral palsy (CP) from low- and middle-income countries (LMICs) to identify trends in HRQoL and areas for future research.Method: We systematically reviewed six key bibliographic databases and two reviewers independently screened results. Peer-reviewed original articles examining HRQoL of children from LMICs were eligible.Results: A total of 22 524 papers were identified, of which 16, from eight LMICs, were included. Four measures of HRQoL were used; Child Health Questionnaire Parent Form 50 (n=5); Paediatric Quality of Life Inventory 3.0 and 4.0 (n=4); CP Quality of Life Questionnaire for Children (n=4); Lifestyle Assessment Questionnaire CP (n=3). Children with CP from LMICs (n=1579; 2-18y) had significantly poorer HRQoL on all instrument dimensions when compared to age-matched controls (p<0.003) and on all except two dimensions when compared to peers in high-income countries (p<0.001). Physical well-being dimensions of HRQoL were poorest overall and associated with impaired motor function.Interpretation: Research to improve HRQoL in LMICs is required and should address all aspects of HRQoL. Future research is recommended to incorporate multi-respondent assessment, utilize both general and CP-specific measures of HRQoL, and delineate adolescents as a unique cohort. What this paper adds Children with cerebral palsy from low- and middle-income countries are at high risk of poor health-related quality of life (HRQoL). Physical well-being was poorest dimension of HRQoL and associated with impaired motor function. [ABSTRACT FROM AUTHOR]

Purpose The purpose of this paper is to determine the relation between quality of life (QoL), mental illness, challenging behaviour and institutionalisation in an adult population with intellectual disabilities (ID).Design/methodology/approach The study assessed the QoL and its conditioning factors in 142 subjects with different degrees of ID. The GENCAT and Quality of Life in Late Stage Dementia scale were used to evaluate QoL, the Psychiatric Assessment Schedule for Adults with Developmental Disability and Diagnostic Assessment for the Severely Handicapped-II scale to assess mental illness and the Inventory for Client and aetiology Planning scale to assess challenging behaviour.Findings Individuals who live in residential care homes were found to have significantly impaired QoL (<0.001). Individuals with challenging behaviour presented significantly lower QoL, regardless of ID aethiology and degree, while psychiatric disorders did not seem to have a direct influence on individual QoL.Originality/value This paper provides new insight into the importance of challenging behaviour and psychiatric disorders in the QoL of individuals with ID. [ABSTRACT FROM AUTHOR]

This mixed-methods, exploratory study investigates the gambling activities of street youth in Mumbai, India. Data from surveys and brief interviews of 70 youth aged 12–24, two focus groups, and ethnographic observations offer descriptive snapshots of the gambling behavior of participants. The article includes details about games played, popular venues, initiation patterns, time spent gambling, and interactions with the police. Street youth gamble for social benefits, such as group membership and fun; it is also a leisure activity enabling time to go by quickly. Individual benefits include intermittent rewards and a high after winning or being referred to as a gambler. The inability to save, the lack of recreation options, living in groups, and the environment of the streets structure and sustain gambling. This study discusses the group and social dimension of gambling among street youth, and how this dimension makes their participation different from adolescent gambling in general and General Addictions Theory. It contributes to the literature by emphasizing that for street youth the social/group aspects of gambling predominate the psychological. The paper concludes with a discussion of the implications for practice, highlighting the need to develop recreational, income-saving, and educational awareness programs. [ABSTRACT FROM AUTHOR]

Aim: To describe 5-year motor and functional outcomes after paediatric arterial ischaemic stroke (AIS) and to explore factors associated with poorer long-term outcome.Method: Thirty-three children (21 males, 12 females) with AIS were recruited to a single-site, cross-sectional study, from a previously reported prospective longitudinal stroke outcome study. Children were stratified according to age at diagnosis: neonates (≤30d), preschool (>30d-5y), and school age (≥5y). Motor and functional outcomes were measured at 5 years after stroke. Neurological outcomes were evaluated using the Pediatric Stroke Outcome Measure (PSOM) at 1 month and more than 4 years after stroke.Results: At 5 years after stroke, motor function, quality of life, fatigue, adaptive behaviour, activities of daily living, and handwriting speed were significantly poorer than age expectations. The preschool group had the highest percentage of fine and gross motor impairment. Poorer fine motor skills were associated with subcortical-only lesions and large lesion size. Poorer gross motor outcomes correlated with preschool age, bilateral lesions, and PSOM impairment at 1 month.Interpretation: Children are at elevated risk for motor and functional impairments after AIS, with the preschool age group most vulnerable. Identifying early predictors of poorer outcomes facilitates targeted early intervention and long-term rehabilitation.What This Paper Adds: Following paediatric stroke, children are at elevated risk of motor and functional difficulties. Stroke occurring between 30 days and 5 years of age may result in poorer motor and functional outcomes. [ABSTRACT FROM AUTHOR]

The review discussed in this paper provides a unique synthesis of evidence and knowledge about carers. The authors adopted a scoping review methodology drawing on a wide range of material from many different sources published between 2000 and 2016. It offers key insights into what we know and how we know it; reinforces and expands evidence about carers' profile; shows knowledge is uneven, e.g. much is known about working carers, young carers and carers of people with dementia but far less is about older carers or caring for someone with multiple needs. A striking feature of much research is a focus on caring as a set of tasks, rather than a dimension of an, often dyadic, relationship. While there is substantive evidence about the negative impact of caring, the review suggests that links between caring and carer outcomes are neither linear nor inevitable and vary in depth and nature. A reliance on cross‐sectional studies using standardised measures is a major weakness of existing research: this approach fails to capture the multidimensionality of the caring role, and the lived experience of the carer. Although research relating to formal support suggests that specific interventions for particular groups of carers may be effective, overall the evidence base is weak. There is a tension between cost‐effectiveness and what is valued by carers. Developing robust evaluative models that accommodate this tension, and take account of the dyadic context of caring is a critical challenge. A fundamental deficit of carer‐related research is its location in one of two, largely separate, paradigmatic frameworks: the "Gatherers and Evaluators" and the "Conceptualisers and Theorisers." The authors suggest that developing an integrated paradigm that draws on the strengths and methods of existing paradigms, has considerable potential to generate new knowledge and new evidence and extend understanding of care and caring. [ABSTRACT FROM AUTHOR]

Background: Electronic formats of patient-reported outcome (PRO) measures are now routinely used in clinical research studies. When changing from a validated paper and pen to electronic administration it is necessary to establish their equivalence. This study reports on the value of Rasch analysis in this process.Methods: Three groups of US pulmonary hypertension (PH) patients participated. The first completed an electronic version of the CAMPHOR Activity Limitation scale (e-sample) and this was compared with two pen and paper administrated samples (pp1 and pp2). The three databases were combined and analysed for fit to the Rasch model. Equivalence was evaluated by differential item functioning (DIF) analyses.Results: The three datasets were matched randomly in terms of sample size (n = 147). Mean age (years) and percentage of male respondents were as follows: e-sample (51.7, 16.0 %); pp1 (50.0, 14.0 %); pp2 (55.5, 40.4 %). The combined dataset achieved fit to the Rasch model. Two items showed evidence of borderline DIF. Further analyses showed the inclusion of these items had little impact on Rasch estimates indicating the DIF identified was unimportant.Conclusions: Differences between the performance of the electronic and pen and paper administrations of the CAMPHOR Activity Limitation scale were minor. The results were successful in showing how the Rasch model can be used to determine the equivalence of alternative formats of PRO measures. [ABSTRACT FROM AUTHOR]

Aim: Health-related quality of life (HRQoL) and peer relationships were investigated in adolescents with developmental coordination disorder (DCD) and attention-deficit-hyperactivity disorder (ADHD).Method: Adolescents with DCD (n=9), ADHD (n=9), DCD and ADHD (n=10), and typically developing adolescents (n=16) completed the following questionnaires: KIDSCREEN-52 Health-Related Quality of Life Questionnaire and Peer Relations Questionnaire for Children. Twenty-five participants took part in semi-structured interviews.Results: Adolescents with DCD and ADHD had lower HRQoL on the mood and emotions, school environment, and financial resources scales of the KIDSCREEN-52 than adolescents in the DCD and typically developing groups (all p<0.05). On the Peer Relations Questionnaire for Children, the DCD and ADHD group reported significantly higher victimization compared with those in the typically developing (p=0.030) and DCD (p=0.010) groups. Qualitative interviews among young people with DCD and ADHD revealed feelings of marginalization and victimization. Descriptors such as 'misfits', 'oddballs', 'weird', and 'the rejects' were used to describe themselves.Interpretation: HRQoL and peer relationships are negatively affected in adolescents with DCD and ADHD. WHAT THIS PAPER ADDS?: Children with developmental coordination disorder (DCD) do not display poorer overall health-related quality of life (HRQoL) versus typically developing controls. Having DCD and attention-deficit-hyperactivity disorder (ADHD) was associated with poorer HRQoL. Adolescents with DCD and ADHD experience significantly higher levels of peer victimization than typically developing adolescents. HRQoL and peer relationships are significantly associated in adolescent respondents. [ABSTRACT FROM AUTHOR]

Aim: To develop and validate a disease-specific parent proxy and child quality of life (QoL) measure for patients aged 2 to 18 years surviving cerebral sinovenous thrombosis (CSVT) and arterial ischaemic stroke (AIS).Method: Utilizing qualitative and quantitative methods, we developed a 75-item Pediatric Stroke Quality of Life Measure (PSQLM) questionnaire. We mailed the PSQLM and a standardized generic QoL measure, Pediatric Quality of Life Inventory (PedsQL), to 353 families. Stroke type, age at stroke, and neurological outcome on the Pediatric Stroke Outcome Measure were documented. We calculated the internal consistency, validity, and reliability of the PSQLM.Results: The response rate was 29%, yielding a sample of 101 patients (mean age 9y 9mo [SD 4.30]; 69 AIS [68.3%], 32 CSVT [31.7%]). The internal consistency of the PSQLM was high (Cronbach's α=0.94-0.97). Construct validity for the PSQLM was moderately strong (r=0.3-0.4; p<0.003) and, as expected, correlation with the PedsQL was moderate, suggesting the PSQLM operationalizes QoL distinct from the PedsQL. Test-retest reliability at 2 weeks was very good (intraclass correlation coefficient [ICC] 0.85-0.95; 95% confidence interval 0.83-0.97) and good agreement was established between parent and child report (ICC 0.63-0.76).Interpretation: The PSQLM demonstrates sound psychometric properties. Further research will seek to increase its clinical utility by reducing length and establishing responsiveness for descriptive and longitudinal evaluative assessment.What This Paper Adds: A pediatric stroke-specific quality of life (QoL) measurement tool for assessments based on perceptions of importance and satisfaction. Moderate-to-high reliability and validity established for a new clinical scale evaluating QoL among children with stroke. Perceived QoL measured using the Pediatric Stroke Quality of Life Measure appears lower in children with neurological impairment. [ABSTRACT FROM AUTHOR]

Aim: Economic appraisal can help guide policy-making for purchasing decisions, and treatment and management algorithms for health interventions. We conducted a systematic review of economic studies in cerebral palsy (CP) to inform future research.Method: Economic studies published since 1970 were identified from seven databases. Two reviewers independently screened abstracts and extracted data following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Any discrepancies were resolved by discussion.Results: Of 980 identified references, 115 were included for full-text assessment. Thirteen articles met standard criteria for a full economic evaluation, two as partial economic evaluations, and 18 as cost studies. Six were full economic evaluations alongside clinical studies or randomized controlled trials, whereas seven involved modelling simulations. The economic case for administration of magnesium sulfate for imminent preterm birth is compelling, achieving both health gain and cost savings. Current literature suggests intrathecal baclofen therapy and botulinum toxin injection are cost-effective, but stronger evidence for long-term effects is needed. Lifestyle and web-based interventions are inexpensive, but broader measurement of outcomes is required.Interpretation: Prevention of CP would avoid significant economic burden. Some treatments and interventions have been shown to be cost-effective, although stronger evidence of clinical effectiveness is needed. What this paper adds Cost-effectiveness evidence shows prevention is the most significant strategy. Some treatments are cost-effective, but stronger evidence for long-term effectiveness is required. Comparison of treatment costs is challenging owing to variations in methodologies and varying clinical indications. [ABSTRACT FROM AUTHOR]

Aim: To describe health-related quality of life of Australian children and adolescents with Down syndrome and compare it with norm-referenced data.Method: A cross-sectional survey was conducted with parents of 75 children and adolescents (43 males, 32 females) with Down syndrome aged 5 to 18 years (mean age 13y 2mo, SD 4y 8mo). The proxy-report KIDSCREEN-27 questionnaire was administered and five dimensions of health-related quality of life were measured. Data were analysed descriptively and compared with normative data.Results: Total group mean scores for psychological well-being, autonomy and parent relation, and school environment dimensions were within normal threshold values, whereas mean scores for physical well-being, and social support and peers dimensions, were poorer. For participants with Down syndrome aged 8 to 18 years, the difference with normative data for proxy-reported physical well-being, psychological well-being, and social support and peers dimensions favoured typically developing children. Adolescents (13-18y) with Down syndrome scored poorer on all dimensions than children (5-12y) with Down syndrome.Interpretation: Our findings assist a better understanding of the lived experiences of children and adolescents with Down syndrome, as perceived by their parents, and suggest aspects of health that could be influenced to optimize their quality of life.What This Paper Adds: Proxy-reported psychological well-being and autonomy were within the normal range for children with Down syndrome. Physical well-being and social support scores were significantly lower than normative data. Proxy-reported scores for adolescents with Down syndrome were consistently poorer than for children with Down syndrome and the differences were clinically important. [ABSTRACT FROM AUTHOR]

Background: No validated disease-specific questionnaires exist to capture health-related quality of life (HRQoL) in patients with Merkel cell carcinoma (MCC). The Functional Assessment of Cancer Therapy - Melanoma (FACT-M) is validated in patients with melanoma, which shares many similarities with MCC. This paper reports the psychometric properties of the FACT-M in the metastatic MCC population.Methods: Data were collected as part of a single-arm, open-label, multicenter trial involving patients with metastatic MCC who had failed at least one previous line of chemotherapy. FACT-M and EQ-5D were administered at baseline, Week 7, Week 13, and Week 25. An optional interview was administered at the same time points. MCC-specific FACT-M scores were derived following a combined quantitative and qualitative approach. Reliability and construct validity of original and additional MCC-specific FACT-M scores were assessed at baseline. Capacity to detect change in tumor size was assessed from baseline to Week 7. Minimally important differences (MIDs) were computed using distribution and anchor-based methods.Results: Baseline assessments were available in 70 patients (mean age: 70 years; 74.3% male); 19 patients were interviewed at baseline. Additional MCC-specific scores were as follows: Physical Function score (six items), Psychological Impact score (six items), and MCC summary score (12 items). FACT-M original and additional MCC-specific scores both demonstrated acceptable psychometric properties: high reliability (Cronbach's alpha: 0.81-0.96), good convergent validity (correlations above 0.4 observed for 88% of items of the Melanoma surgery scale, 75% of items of the Melanoma scale, and 100% of items of the other FACT-M domains). Some evidence of floor/ceiling effects and poor discriminant ability was found. Higher scores (better HRQoL) on all FACT-M domains were observed in patients with better functioning (assessed by ECOG performance score), supporting clinical validity. Despite the small sample for responsiveness analysis (n = 37), the majority of FACT-M scores showed sensitivity to changes in tumor size at Week 7 with small to moderate effect sizes. MIDs were consistent with previously reported values in the literature for FACT-M domains.Conclusions: FACT-M is suitable to capture HRQoL in patients with metastatic MCC, thus making it a potential candidate for assessing HRQoL in MCC trials.Trial Registration: This study is a post-hoc analysis conducted on data collected in Part A of the JAVELIN Merkel 200 trial. This trial was registered on 2 June 2014 with ClinicalTrials.gov as NCT02155647 . [ABSTRACT FROM AUTHOR]

Aim: To examine long-term outcomes of selective dorsal rhizotomy (SDR) 10 to 17 years after surgery.Method: Participants who underwent SDR had spastic diplegic cerebral palsy (CP), completed baseline gait analysis, and were 16 to 25 years old at follow-up. Non-SDR participants (i.e. controls) were matched on important clinical parameters at baseline but did not undergo SDR. All study participants completed six surveys assessing pain, quality of life, participation, function, and mobility. Treatment history for lower extremity surgery and antispasticity injections was tabulated. A subset of each study group returned for three-dimensional gait analysis, including kinematics, metabolic energy cost, and physical examination. Gait Deviation Index (GDI) was calculated to measure gait quality.Results: The study cohort had 24 participants with SDR and 11 without SDR. Of these, 13 patients with SDR (five males, eight females; median [IQR] age 17y 2mo [16y 8mo-17y 9mo]) and eight without SDR (three males, five females; median [IQR] age 19y 2mo [17y 3mo-21y 11mo]) completed baseline and follow-up gait analysis. Spasticity significantly decreased in those with SDR (p<0.05). Gait Deviation Index improved more in participants without SDR than those with SDR (Δnon-SDR =12.8 vs ΔSDR =9.1; p=0.01). Compared with the SDR group, participants without SDR underwent significantly more subsequent interventions (p<0.05).Interpretation: Patients in both the SDR and non-SDR groups showed improved gait quality more than 10 years after surgery. Participants without SDR had a larger improvement in gait pathology but underwent significantly more intervention. There were no differences between groups in survey measures. These results suggest differing treatment courses provide similar outcomes into early adulthood.What This Paper Adds: Selective dorsal rhizotomy (SDR) and non-SDR groups had significant improvement in gait pathology over time. The non-SDR group had significantly better gait compared with the SDR group at follow-up. The groups had similar levels of energy cost, pain, and quality of life. Non-SDR participants underwent significantly more orthopaedic surgery and antispasticity injections than SDR participants. Use of a clinically similar control group highlights that different treatment courses may result in similar outcomes into young adulthood. [ABSTRACT FROM AUTHOR]

Aim: This study investigated the relationship between quality of life (QoL) and health-related quality of life (HRQoL) and assessed factors other than health that contribute to differences in QoL in young males with Duchenne muscular dystrophy (DMD).Method: In this cross-sectional study, QoL and HRQoL measures were completed by 98 parents and 85 children. The Quality of My Life (QoML) questionnaire measured QoL and HRQoL as single-items, and the Pediatric Quality of Life 4.0 Generic Core (PedsQL) questionnaire was used as a multidimensional measure of HRQoL. Simple regression was used to examine the relationship between single-item measures of HRQoL and QoL. Multivariable regression was used to investigate factors that may contribute to difference in QoL and HRQoL.Results: While ratings of QoL and HRQoL were significantly correlated with one another, HRQoL only accounted for 21% and 44% of the variability in QoL by child- and parent-reports respectively. None of the factors measured contributed ratings of the child's QoL to be much higher than HRQoL.Interpretation: QoL and HRQoL are related but distinct constructs as rated by children with DMD and their parents. Further research is needed to elucidate factors outside HRQoL that contribute to QoL.What This Paper Adds: Quality of life (QoL) and health-related quality of life are distinct concepts rated by young males with Duchenne muscular dystrophy (DMD) and their parents. Factors outside of 'health' contribute to overall QoL in the paediatric population with DMD. This article's abstract has been translated into Spanish and Portuguese. Follow the links from the abstract to view the translations. [ABSTRACT FROM AUTHOR]

Background: The National Institute for Health and Care Excellence (NICE) recommends evidence-based parenting programmes as a first-line intervention for conduct disorders (CD) in children aged 5-11 years. As these are not effective in 25-33% of cases, NICE has requested research into second-line interventions. Child and Adolescent Psychotherapists (CAPTs) address highly complex problems where first-line treatments have failed and there have been small-scale studies of Psychoanalytic Child Psychotherapy (PCP) for CD. A feasibility trial is needed to determine whether a confirmatory trial of manualised PCP (mPCP) versus Treatment as Usual (TaU) for CD is practicable or needs refinement. The aim of this paper is to publish the abridged protocol of this feasibility trial.Methods and Design: TIGA-CUB (Trial on improving Inter-Generational Attachment for Children Undergoing Behaviour problems) is a two-arm, pragmatic, parallel-group, multicentre, individually randomised (1:1) controlled feasibility trial (target n = 60) with blinded outcome assessment (at 4 and 8 months), which aims to develop an optimum practicable protocol for a confirmatory, pragmatic, randomised controlled trial (RCT) (primary outcome: child's behaviour; secondary outcomes: parental reflective functioning and mental health, child and parent quality of life), comparing mPCP and TaU as second-line treatments for children aged 5-11 years with treatment-resistant CD and inter-generational attachment difficulties, and for their primary carers. Child-primary carer dyads will be recruited following a referral to, or re-referral within, National Health Service (NHS) Child and Adolescent Mental Health Services (CAMHS) after an unsuccessful first-line parenting intervention. PCP will be delivered by qualified CAPTs working in routine NHS clinical practice, using a trial-specific PCP manual (a brief version of established PCP clinical practice). Outcomes are: (1) feasibility of recruitment methods, (2) uptake and follow-up rates, (3) therapeutic delivery, treatment retention and attendance, intervention adherence rates, (4) follow-up data collection, and (5) statistical, health economics, process evaluation, and qualitative outcomes.Discussion: TIGA-CUB will provide important information on the feasibility and potential challenges of undertaking a confirmatory RCT to evaluate the effectiveness and cost-effectiveness of mPCP.Trial Registration: Current Controlled Trials, ID: ISRCTN86725795 . Registered on 31 May 2016. [ABSTRACT FROM AUTHOR]

Purpose – This paper aims to present an overview of the current state of evidence on the effect of housing circumstances, and housing-related interventions, on adult mental health and well-being. It covers the entire range of health from chronic illness to positive thriving, and both individual and community-level/public health. Design/methodology/approach – The paper is based upon a purposive review, commissioned originally for the UK Department of Health; and therefore is selective in giving priority to research relevant to public policy considerations, and to the UK context. Research with a variety of methodological foundations is considered, where robust enough by its own standards. Findings – The available evidence gives conditional support to policies accentuating empowerment at individual and community levels; early intervention; locality or place-based interventions; and integrated working practice. The complexity of methodological issues emerges as a key challenge for research in this field, and for the prospect of evidence-based national policy. Meanwhile local knowledge and interpretation of data in context may be more reliable than context-blind studies. Research limitations/implications – Where "hard evidence" is unavailable, reports of the lived experience of individuals and in communities remain a legitimate basis for policy and commissioning. Originality/value – This appears to be the first attempt in print to cover such a wide canvas in one overview. [ABSTRACT FROM AUTHOR]

The consequences of traumatic brain injury (TBI) for health-related quality of life (HRQoL) are still poorly understood, and no TBI-specific instrument has hitherto been available. This paper describes in detail the psychometrics and validity of the German version of an internationally developed, self-rated HRQoL tool after TBI—the QOLIBRI (Quality of Life after Brain Injury). Factors associated with HRQoL, such as the impact of cognitive status and awareness, are specifically reported. One-hundred seventy-two participants after TBI were recruited from the records of acute clinics, most of whom having a Glasgow Coma Scale (GCS) 24-hour worst score and a Glasgow Outcome Scale (GOSE) score. Participants had severe (24%), moderate (11%) and mild (56%) injuries as assessed on the GCS, 3 months to 15 years post-injury. The QOLIBRI uses 37 items to measure “satisfaction” in the areas of “Cognition”, “Self”, “Daily Life and Autonomy”, and “Social Relationships”, and “feeling bothered” by “Emotions”and “Physical Problems”. The scales meet standard psychometric criteria (α = .84 to .96; intra-class correlation—ICC = .72 to .91). ICCs (0.68 to 0.90) and αs (.83 to .96) were also good in a subgroup of participants with lower cognitive performance. The six-subscale structure of the international sample was reproduced for the German version using confirmatory factor analyses and Rasch analysis. Scale validity was supported by systematic relationships observed between the QOLIBRI and the GOSE, Patient Competency Rating Scale for Neurorehabilitation (PCRS-NR), Hospital Anxiety and Depression Scale (HADS), Profile of Mood States (POMS), Short Form 36 (SF-36), and Satisfaction with Life Scale (SWLS). The German QOLIBRI contains novel information not provided by other currently available measures and has good psychometric criteria. It is potentially useful for clinicians and researchers, in post-acute and rehabilitation studies, on a group and individual level. [ABSTRACT FROM AUTHOR]

Posttraumatic growth after burn is a relatively new area of study with only a small number of studies that have examined this phenomenon. It is important to understand the presentation of posttraumatic growth and coping in burn survivors, how it changes over time and the components which influence growth so that we can understand how to promote posttraumatic growth in burn survivors. The aim of this review was to assess these three parameters. Studies were identified through multiple databases with specific search terms to identify posttraumatic growth after burn. From the 813 articles found, 57 were identified as potentially useful, and 8 as eligible for review; three qualitative, one mixed methods, two quantitative, one discussion paper and part of a review which assessed all psychosocial outcomes. Growth presented as realising personal strength, reprioritising, spirituality, humanity, changed relationships, and compassion and altruism. Styles of coping included feelings of gratefulness and downward comparison, humour and planning. Suddenness of the event, and the severity and location of injury might affect the amount of growth experienced. Overall function, quality of life, social support and optimism, hope and new opportunities are influences on growth after burn, all of which have the potential for improvement through targeted intervention strategies. Further research is indicated in many areas related to growth, intervention and measurement. [ABSTRACT FROM AUTHOR]

Background: Increased immigration requires successful interaction of different cultures in various life domains, such as health. This study investigates acculturation orientation (AO) of immigrant patients and doctors native to the country, as a potential factor related to perceived medical advice adherence.Data and Methods: N = 171 immigrant patients (M = 54.38 years, SD = 17.94, range = 23-96, 74.3 % female) and their N = 12 doctors (M = 38.88 years, SD = 13.42, range = 27-66, 83 % female) from a hospital in Montreal, Canada, participated in a paper-based survey to assess AOs, patients' perceived expectations of their doctor (regarding adopting the new culture or keeping their previous culture), doctors' actual expectations, perceived quality of care and perceived adherence.Results: AO of patients significantly related to perceived adherence, via a path model involving perceptions of doctors' expectations and perceived quality of care. Integration was positively related to perceived adherence, while Marginalization was negatively related to it. Doctors' AOs were not significant.Conclusion: Patient perceptions seem to be a significant factor to be considered when striving to improve immigrant medical advice adherence. [ABSTRACT FROM AUTHOR]

Background: Most longitudinal or treatment studies in bipolar disorder have used symptomatic or syndromal status as the primary outcome variable. More recently, psychosocial functioning has been highlighted as a key domain of outcome. Patients with bipolar disorder appear to be impaired in all functional domains, although the factors that cause impairment have not been clearly specified.Methods: This paper reviews cross-sectional and longitudinal studies on functional impairment and its relationship to symptomatic, neurocognitive, personality, and stress variables in bipolar disorder; and the implications of these relationships for defining treatment targets. 93 articles were located through comprehensive MEDLINE, SCOPUS and Web of Science searches.Results and Discussion: Functional recovery following a mood episode consistently lags behind symptomatic and syndromal recovery. Longer term functional impairment is only partly explained by the number of manic/hypomanic episodes. Depression (including subsyndromal states) and persistent neurocognitive impairment are the strongest correlates of functional impairment in bipolar disorder, with personality and psychosocial stressors playing secondary roles. Possible treatment options include: more aggressive treatment of subthreshold depressive states, pharmacotherapies that target cognition (e.g., stimulants), and adjunctive psychotherapies including cognitive remediation. [ABSTRACT FROM AUTHOR]

Background: This paper describes the cross-cultural adaptation of the Psychosocial Impact of Dental Aesthetics Questionnaire (PIDAQ) into Malay version (Malay PIDAQ), an oral health-related quality of life (OHRQoL) instrument specific for orthodontics for Malaysian adolescents between 12 and 17 years old.Methods: The PIDAQ was cross-culturally adapted into Malay version by forward- and backward-translation processes, followed by psychometric validations. After initial investigation of the conceptual suitability of the measure for the Malaysian population, the PIDAQ was translated into Malay, pilot tested and back translated into English. Psychometric properties were examined across two age groups (319 subjects aged 12-14 and 217 subjects aged 15-17 years old) for factor structure, internal consistency, reproducibility, discriminant and construct validity, criterion validity, and assessment of floor and ceiling effects.Results: Fit indices by confirmatory factor analysis showed good fit statistics (comparative fit index = 0.936, root-mean-square error of approximation = 0.064) and invariance across age groups. Internal consistency and reproducibility tests were satisfactory (Cronbach's α = 0.71-0.91; intra-class correlations = 0.72-0.89). Significant differences in Malay PIDAQ mean scores were observed between subjects with severe malocclusion and those with slight malocclusion based on a self-rated and an investigator-rated malocclusion index, for all subscales and all age groups (p < 0.05). Construct validity of the Malay PIDAQ subscales with those who rated themselves with excellent to poor dental appearance and those who felt they needed or did not need braces, showed significant associations for all age groups (p < 0.05). Criterion validity also showed significant association between the Malay PIDAQ scores with those with and without impact on daily activities attributed to malocclusion. There were no ceiling effects detected but floor effects were detected for the Aesthetic Concern subscale.Conclusion: The study has provided initial evidence for the validity and reliability of the Malay PIDAQ to assess the impact of malocclusion on the OHRQoL of 12-17 year old Malaysian adolescents. [ABSTRACT FROM AUTHOR]

Background: Employment status and working conditions are strong determinants of male health, and are therefore an important focus in the Australian Longitudinal Study on Male Health (Ten to Men). In this paper, we describe key work variables included in Ten to Men, and present analyses relating psychosocial job quality to mental health and subjective wellbeing at baseline.Methods: A national sample of males aged 10 to 55 years residing in private dwellings was drawn using a stratified multi-stage cluster random sample design. Data were collected between October 2013 and July 2014 for a cohort of 15,988 males, representing a response fraction of 35 %. This analysis was restricted to 18-55 year old working age participants (n = 13,456). Work-related measures included employment status, and, for those who were employed, a number of working conditions including an ordinal scale of psychosocial job quality (presence of low job control, high demand and complexity, high job insecurity, and low fairness of pay), and working time-related stressors such as long working hours and night shift work. Associations between psychosocial job quality and two outcome measures, mental ill-health and subjective wellbeing, were assessed using multiple linear regression.Results: The majority of participants aged 18-55 years were employed at baseline (85.6 %), with 8.4 % unemployed and looking for work, and 6.1 % not in the labour force. Among employed participants, there was a high prevalence of long working hours (49.9 % reported working more than 40 h/week) and night shift work (23.4 %). Psychosocial job quality (exposure to 0/1/2/3+ job stressors) prevalence was 36 %/ 37 %/ 20 %/ and 7 % of the working respondents. There was a dose-response relationship between psychosocial job quality and each of the two outcome measures of mental health and subjective wellbeing after adjusting for potential confounders, with higher magnitude associations between psychosocial job quality and subjective wellbeing.Conclusions: These results extend the study of psychosocial job quality to demonstrate associations with a global measure of subjective wellbeing. Ten to Men represents a valuable new resource for the longitudinal and life course study of work and health in the Australian male population. [ABSTRACT FROM AUTHOR]

Background and Objectives: Systemic lupus erythematosus (SLE) is a chronic autoimmune disease. Previous studies showed that perceived social support has an important role in enhancing patient's quality of life (QOL). However, the precise mechanisms through which social support exerts such an effect are not completely understood. The aim of this paper is to test two alternative models explaining the relationship between social support (positive and problematic) and two dimensions of QOL: Health-Related (HR-QOL) and Non-Health-Related (NHR-QOL).Design: Model A (mediation) hypothesized that positive support would reduce stress while problematic support would increase stress), and that this in turn would reduce QOL. Model B (moderation) hypothesized that the effect of support on QOL would be moderated by the experience of stress in that more stressed individuals would show stronger effects.Methods: Three hundred and forty-four Italian patients with SLE completed an online questionnaire.Results: Stress partially mediated the relationship between support and QOL dimensions (either HR-QOL and NHR-QOL) thus supporting Model B. As hypothesized, positive support reduced stress, while problematic support increased stress.Conclusions: These findings help to explain the complex relationship between social support, stress and QOL in patients with SLE. [ABSTRACT FROM AUTHOR]

Background: The increasing survival of patients with pulmonary arterial hypertension (PAH) has shifted attention towards the disease burden that PAH imposes on patients and healthcare systems. Most studies emphasize epidemiology and medications, while large observational studies reporting on the health-related quality of life (HRQOL) of patients with PAH are lacking.Objective: Our objective was to study the HRQOL of patients with PAH and to summarize the factors that influence it.Methods: We conducted systematic literature searches in English (PubMed, Web of Knowledge, ScienceDirect and OVID) and Chinese (China National Knowledge Infrastructure, Wanfang Data, Chongqing VIP and SinoMed) databases to identify studies published from 2000 to 2015 assessing the HRQOL of patients with PAH. Search results were independently reviewed and extracted by two reviewers.Results: Of 3392 records identified in the initial search, 20 eligible papers (19 English, 1 Chinese) were finally included. Studies used a range of instruments; the generic 36-item Short Form Survey (SF-36) was the most widely used, and the disease-specific Cambridge Pulmonary Hypertension Outcome Survey (CAMPHOR) was the second mostly widely used. Mean HRQOL scores assessed via the SF-36 (physical component summary [PCS] 25.4-80.1; mental component summary [MCS] 33.2-76.0) and CAMPHOR (symptom scores 3.1-17; total HRQOL 2.8-12.6; activity scores 3.8-18.1) varied across studies, reporting decreased HRQOL in patients. Mental health (depression, anxiety, stress), physical health (exercise capacity, symptoms) and medical therapies were reported to affect HRQOL.Conclusion: We found that PAH places a substantial burden on patients, particularly in terms of HRQOL; however, the paucity of large observational studies in this area requires the attention of researchers, especially in China. [ABSTRACT FROM AUTHOR]

Purpose: This paper aims to estimate the comorbidity of mental disorders and chronic physical conditions and to describe the impact of these conditions on health-related quality of life (HRQoL) in a sample of older primary care (PC) attendees by gender.Methods: Cross-sectional survey, conducted in 77 PC centres in Catalonia (Spain) on 1192 patients over 65 years old. Using face-to-face interviews, we assessed HRQoL (SF-12), mental disorders (SCID and MINI structured clinical interviews), chronic physical conditions (checklist), and disability (Sheehan disability scale). We used multivariate quantile regressions to model which factors were associated with the physical component summary-short form 12 and mental component summary-short form 12.Result: The most frequent comorbidity in both men and women was mood disorder with chronic pain and arthrosis. Mental disorders mainly affected 'mental' QoL, while physical disorders affected 'physical' QoL. Mental disorders had a greater impact on HRQoL than chronic physical conditions, with mood and adjustment disorders being the most disabling conditions. There were some gender differences in the impact of mental and chronic physical conditions on HRQoL. Anxiety disorders and pain had an impact on HRQoL but only in women. Respiratory diseases had an effect on the MCS in women, but only affected the PCS in men.Conclusions: Mood and adjustment disorders had the greatest impact on HRQoL. The impact profile of mental and chronic physical conditions differs between genders. Our results reinforce the need for screening for mental disorders (mainly depression) in older patients in PC. [ABSTRACT FROM AUTHOR]

Purpose: The macular degeneration quality of life (MacDQoL) instrument is a validated condition-specific measure of quality of life in patients with macular degeneration. This paper presents the first mapping algorithm to predict EQ-5D from responses to the MacDQoL instrument.Methods: Responses to the MacDQoL and EQ-5D-3L instruments from 482 patients were collected from the IVAN multicentre trial of two alternative drug treatments for neovascular age-related macular degeneration. Regression specifications were estimated using OLS, censored least absolute deviation, Tobit and two-part models. Their predictive performance was assessed using mean squared error. An internal validation sample based on a random selection of 25 % of patients was used to assess the performance of the model estimated on the remaining 75 % of patients.Results: A two-part model had the best predictive performance on the full sample. The covariates of this model include responses and weighted impact scores for all 23 condition-specific domains of the MacDQoL, and responses to a general MacDQoL quality of life question. The selected models were successful at predicting means and standard deviations of target populations, but prediction is weaker at the upper and lower extremes of the EQ-5D-3L distribution.Conclusion: The mapping algorithms provide a means of predicting EQ-5D-3L index scores from MacDQoL scores, and could facilitate cost-effectiveness analyses when the latter but not the former are available to researchers. Further validation of the performance of the algorithms using external data would provide a means of establishing the robustness of the algorithms. [ABSTRACT FROM AUTHOR]

Complementing the commonly used concepts of evaluative wellbeing and decision utility, emotional wellbeing and experienced utility are important welfare criteria to assess individuals' subjective wellbeing, especially for valuing health and disability. Yet, almost all empirical evidences on the link between disability and experienced wellbeing come from developed countries. This paper studies the relationship between old-age disability and experienced utility in five low- and middle-income countries. Using data on individual time use and activity-specific affective experiences from an abbreviated version of the Day Reconstruction Method, we document a strong negative association between disability and experienced utility. These differences in experienced utility by disability status are exclusively due to worse activity-specific affective experiences among persons with disabilities. By contrast, disability-related differences in time use provide small compensating effects. Interventions or technologies that facilitate daily life hold most promise to improve experienced utility among persons with disabilities in the developing world. [ABSTRACT FROM AUTHOR]

Introduction: Burn care innovations have vastly reduced mortality rates and improved prognoses, fostering the need for multi-disciplinary input in holistic recovery. Consequently psychological and social considerations post-burn are included in National Burn Care Standards and have featured increasingly in burns literature.Aim: To identify the key findings of the rapidly expanding literature base for psychosocial adjustment post-burn, highlighting the most important knowledge and future directions for both practice and research.Method: MEDLINE, CINAHL, EMBASE, PsycINFO, BNI, HMIC databases were searched from January 2003 to September 2013 using search terms regarding psychosocial adjustment post-burn. After exclusions 24 papers underwent critical appraisal.Results: Studies were categorised by the element of adjustment that they examined; psychopathology, quality of life, return to work, interpersonal, post-traumatic growth. Strengths, weaknesses, and significant findings within each category were presented.Discussion: Although psychopathology and quality of life were well-researched compared to other categories, all would benefit from methodological improvements such as sample size or dropout rates. Coping strategies, premorbid psychopathology, and personality consistently featured as predictors of adjustment, although research should now move from identifying predictors, to clarifying the concept and parameters of psychosocial adjustment while developing and evaluating interventions to improve outcomes. [ABSTRACT FROM AUTHOR]

Background: Aboriginal children experience challenges to their health and well-being, yet also have unique strengths. It has been difficult to accurately assess their health outcomes due to the lack of culturally relevant measures. The Aboriginal Children's Health and Well-Being Measure (ACHWM) was developed to address this gap. This paper describes the validity of the new measure.Methods: We recruited First Nations children from one First Nation reserve in Canada. Participants were asked to complete the ACHWM independently using a computer tablet. Participants also completed the PedsQL. The ACHWM total score and 4 Quadrant scores were expected to have a moderate correlation of between 0.4 and 0.6 with the parallel PedsQL total score, domains (scale scores), and summary scores.Results: Paired ACHWM and PedsQL scores were available for 48 participants. They had a mean age of 14.6 (range of 7 to 19) years and 60.4 % were girls. The Pearson's correlation between the total ACHWM score and a total PedsQL aggregate score was 0.52 (p = 0.0001). The correlations with the Physical Health Summary Scores and the Psychosocial Health Summary Scores were slightly lower range (r = 0.35 p = 0.016; and r = 0.51 p = 0.0002 respectively) and approached the expected range. The ACHWM Quadrant scores were moderately correlated with the parallel PedsQL domains ranging from r = 0.45 to r = 0.64 (p ≤ 0.001). The Spiritual Quadrant of the ACHWM did not have a parallel domain in the PedsQL.Conclusions: These results establish the validity of the ACHWM. The children gave this measure an Ojibway name, Aaniish Naa Gegii, meaning "how are you?". This measure is now ready for implementation, and will contribute to a better understanding of the health of Aboriginal children. [ABSTRACT FROM AUTHOR]

This review was designed to consider the available literature concerning mental health and physical activity in women with polycystic ovary syndrome (PCOS). A systematic approach was taken and two electronic databases (PubMed and EBSCO Research articles published between 1970 and 2013) were searched in 2013 to inform a narrative review. Inclusion criteria encompassed requirements for the research to involve a physical activity intervention and assessment of mental health outcomes in women with PCOS. Seven articles considered mental health outcomes and physical activity interventions for women with PCOS. The results demonstrated positive outcomes following physical activity intervention for health-related quality of life, depression, and anxiety. Only one paper reported the independent effects of physical activity on mental health. All other interventions included multi-factor lifestyle interventions or did not establish a control group. Physical activity is likely to be beneficial to the mental health of women with PCOS; however, more research is required to establish the nature of the relationship between physical activity and mental health outcomes. [ABSTRACT FROM AUTHOR]

Emotion is Energy-in-Motion. It is a way of expressing oneself in life and the quality of how one relates to life. People vary widely in their typical emotional style that is whether they tend to feel generally positive or generally negative. The present paper discusses the role of positive emotions in the development of psychological well- being. Positive emotions form the experiential foundation for mentally healthy people. Positive emotions provide a foundation for growth and exploration and build the intellectual, social and physical capital for further growth and development. Positive emotion has been implicated as an important component in the link between religion and health. Experiencing positive emotions helps people to become more resilient, more creative, wiser, more virtuous, more socially integrated, and physically healthier. Psychological well-being, broadly defined as happiness, life satisfaction, and self-growth, represents one of the most important aspects of efficient psychological functioning. Indeed, much research reveals that happy people experience a number of benefits ranging from physical health to better relationships to high-level performance. Psychological well-being is the combination of feeling good and functioning effectively. [ABSTRACT FROM AUTHOR]

Since the beginning of the nineties, a number of studies indicate that weather conditions at interview day can have an effect on measurement, in particular regarding life satisfaction. In their seminal paper, Schwarz and Clore (J Pers Soc Psychol 45(3):513-523, ) show higher reported life satisfaction for sunny days, a finding which is replicated recently by Kämpfer and Mutz (Soc Indic Res 110(2):579-595, ). However, both studies are based on relatively small samples (from a few dozen up to 200 cases). We use data of the German Family Panel (pairfam) and local weather data for every respondent to investigate if weather effects on satisfaction measurement can be replicated with a large sample (about 7,000 respondents). In addition to cross-sectional analyses in which we follow closely the approach of Kämpfer and Mutz, we estimate fixed effects regressions to model the effect of weather on individual changes in satisfaction over time. We do neither find an effect of nice weather on the day of the interview on the respondents' ratings of general life satisfaction nor a consistent effect on any of the other satisfaction measures. These results show that at least with simple weather measures as they have been used as yet a relationship between weather conditions at interview day and answering behavior regarding life satisfaction cannot be found. [ABSTRACT FROM AUTHOR]

Alzheimer's disease is known for placing a significant burden on caregivers, which includes social, psychological, physical or economic aspects. The disease decreases patients' capacity for activities of daily living and quality of life. Information about functional status is useful in the interpretation of the quality of life assessment results. In this paper the most commonly used scales evaluating activities of daily living and quality of life in Alzheimer's disease, either generic or specific, is presented. [ABSTRACT FROM AUTHOR]

The face is a vital component of one's personality and body image. There are a vast number of variables that influence recovery and rehabilitation from acquired facial trauma many of which are psychological in nature. The present paper presents the various psychological issues one comes across in facial trauma patients. These may range from body image issues to post-traumatic stress disorder symptoms accompanied by anxiety and depression. Issues related to facial and body image affecting social life and general quality of life are vital and the plastic surgeon should be aware of such issues and competent to deal with them in patients and families. [ABSTRACT FROM AUTHOR]

Aim. This paper is a report of an exploration of the effects of self-efficacy and different dimensions of self-management on quality of life among kidney transplant recipients. Background. Self-efficacy is an important factor influencing self-management. Patients with higher self-efficacy have better self-management and experience better quality of life. Self-efficacy influences the long-term medication-taking behaviour of kidney transplant recipients. Method. A longitudinal, correlational design was used. Data were collected during 2005–2006 with 150 adult kidney transplant recipients on self-efficacy, self-management and quality of life using a self-efficacy scale, self-management scale and the Medical Outcomes Scale SF-36 (Chinese), respectively. Relationships among variables were analysed by path analysis. Results. Participants with higher self-efficacy scored significantly higher on the problem-solving ( β = 0·51), patient–provider partnership ( β = 0·44) and self-care behaviour ( β = 0·55) dimensions of self-management. Self-efficacy directly influenced self-care behaviour and indirectly affected the mental health component of quality of life (total effect = 0·14). Problem-solving and partnership did not statistically significantly affect quality of life. Neither self-efficacy nor self-management had any effect on the physical health component of quality of life. Conclusion. Transplant care teams should incorporate strategies that enhance self-efficacy, as proposed by social cognitive theory, into their care programmes for kidney transplant recipients. Interventions to maintain and improve patients’ self-care behaviour should continue to be emphasized and facilitated. Support to enhance patients’ problem-solving skills and the partnership of patients with health professionals is needed. [ABSTRACT FROM AUTHOR]

To our knowledge, no comprehensive, interdisciplinary initiatives have been taken to examine the role of genetic variants on patient-reported quality-of-life outcomes. The overall objective of this paper is to describe the establishment of an international and interdisciplinary consortium, the GENEQOL Consortium, which intends to investigate the genetic disposition of patient-reported quality-of-life outcomes. We have identified five primary patient-reported quality-of-life outcomes as initial targets: negative psychological affect, positive psychological affect, self-rated physical health, pain, and fatigue. The first tangible objective of the GENEQOL Consortium is to develop a list of potential biological pathways, genes and genetic variants involved in these quality-of-life outcomes, by reviewing current genetic knowledge. The second objective is to design a research agenda to investigate and validate those genes and genetic variants of patient-reported quality-of-life outcomes, by creating large datasets. During its first meeting, the Consortium has discussed draft summary documents addressing these questions for each patient-reported quality-of-life outcome. A summary of the primary pathways and robust findings of the genetic variants involved is presented here. The research agenda outlines possible research objectives and approaches to examine these and new quality-of-life domains. Intriguing questions arising from this endeavor are discussed. Insight into the genetic versus environmental components of patient-reported quality-of-life outcomes will ultimately allow us to explore new pathways for improving patient care. If we can identify patients who are susceptible to poor quality of life, we will be able to better target specific clinical interventions to enhance their quality of life and treatment outcomes. [ABSTRACT FROM AUTHOR]

Old-age mortality is notoriously difficult to predict because it requires not only an understanding of the process of senescence-which is influenced by genetic, environmental, and behavioral factors-but also a prediction of how these factors will evolve. In this paper I argue that individuals are uniquely qualified to predict their own mortality based on their own genetic background, as well as environmental and behavioral risk factors that are often known only to the individual. Given this private information, individuals form expectations about survival probabilities that may provide additional information to demographers and policymakers in their challenge to predict mortality. From expectations data from the 1992 Health and Retirement Study (HRS), I construct subjective, cohort life tables that are shown to predict the unusual direction of revisions to U.S. life expectancy by gender between 1992 and 2004: that is, for these cohorts, the Social Security Actuary (SSA) raised male life expectancy in 2004 and at the same lowered female life expectancy, narrowing the gender gap in longevity by 25% over this period. Further, although the subjective life expectancies for men appear to be roughly in line with the 2004 life tables, the subjective expectations of women suggest that female life expectancies estimated by the SSA might still be on the high side. [ABSTRACT FROM AUTHOR]

Background: We implemented a comprehensive intervention program targeting general practice staff, that proved successful in optimizing practice organization and clinical decision-making. In this paper, health-related quality of life (HRQL) is investigated as a clinical outcome.Objective: To evaluate the effect of the implementation of an intervention program on the HRQL in patients at high cardiovascular risk.Research Design: Randomized controlled trial. Intervention practices (n = 62) received a comprehensive intervention program (by means of outreach visitors) lasting 21 months. HRQL of patients at high cardiovascular risk was assessed by the MOS 36-Item Short-Form Health Survey (SF-36), at baseline and after intervention. Three patient categories were distinguished: diabetes mellitus, cardiovascular disease and hypertension.Results: HRQL deteriorated in all respondents, but more pronounced in the control group. In diabetes patients the differences between intervention and control group were significant for the Vitality and Mental Health scales, with mean difference in change of 3.93 (95% CI: 1.08-6.78) and 3.71 (95% CI: 0.73-6.68), respectively. Patients with cardiovascular disease had significantly different changes on three scales: physical functioning (3.57, 95% CI: 0.71-6.43), vitality (3.01, 95% CI: 0.72-5.30) and social functioning (3.96, 95% CI: 0.50-7.42). In patients with hypertension, there were no differences between the intervention and control group.Conclusion: Our comprehensive intervention program resulted in changes in HRQL on several domains, particularly in patients with diabetes and cardiovascular disease. [ABSTRACT FROM AUTHOR]

This paper evaluated the quality of life (QOL) of people with multiple sclerosis (MS) and people from the general population. Gender differences between the 2 groups of respondents and the influence of coping style on adjustment were also evaluated. The participants were 381 (144 males, 237 females) people with MS, and 291 (101 males, 190 females) people from the general population. The results demonstrated that people with MS experienced lower levels of QOL than people from the general population for both the objective and subjective dimensions of all domains (physical health, psychological adjustment, social relationships, environmental adjustment). All coping strategies (problem-focused, focusing on the positive, detachment, wishful thinking, seeking social support) were important predictors of QOL for both males and females with MS, with wishful thinking being the strongest predictor of poor QOL. These results are discussed in terms of the various factors that impact on QOL among people with MS, and the types of coping strategies that are most adaptive in improving the QOL of people with this illness. [ABSTRACT FROM AUTHOR]

The paper describes the development and preliminary testing of a scale designed to capture aspects of subjective responses to, and tolerability of antipsychotic drugs, treatment adherence, and impact of antipsychotic drug therapy on the quality of life of individuals treated for schizophrenia. Using empirical study approaches and qualitative methods of data analysis, twelve themes were initially identified as relevant to the quality of life of individuals during antipsychotic drug therapy. Based on these dimensions, in the second phase, a 30 item self report questionnaire was constructed and field tested in a community based, heterogeneous sample of schizophrenic patients (n=335). The scale was easy to self-administer (in 2–5 min) and perceived as user-friendly by patients. Correlational analysis revealed a high internal consistency (Cronbach''s alpha=0.92) and split half reliability (Spearman–Brown coefficient of 0.85). The scale scores were able to distinguish subjects with lower and higher rates of treatment adherence, and factor analysis confirmed the robustness of the original construct. Repeated administration of the scale in a sub-sample of clinically stable schizophrenic population (n=71) revealed a test–retest reliability coefficient of 0.97 (P<0.001); and repeat administration at quarterly intervals in a sample of patients receiving active treatment (n=54) indicated a significant increases in mean scores (t=6.2, df=53, P<0.005), suggesting that the scale was sensitive to changes in patients’ clinical status. Based on these preliminary data, PETiT could be considered as a potentially useful tool for measuring client-centred outcomes in clinical practice, drug trials, quality assurance programs and interventional research involving schizophrenic patients. [Copyright &y& Elsevier]

Abstract: While there exists an extensive body of knowledge regarding the risks associated with youth homelessness, very little work has addressed the process of exiting street contexts. This paper reports baseline findings from an ongoing longitudinal study assessing factors associated with a successful transition out of homelessness. Fifty-one formerly homeless youth who obtained stable housing in the past 2 months to 2 years participated in this study which took place in two Canadian urban centres. Findings include poorer functioning across all domains for youth residing in housing contexts without supports, a lack of relationship between psychological and behavioural aspects of community integration, and the central role of self-concept in mental health and quality of life. These findings suggest the need for ongoing support for youth exiting street spaces and social contexts, with attention to the importance of self-concept and psychological aspects of community integration. [Copyright &y& Elsevier]

This paper investigates the utility and efficacy of a novel eight-week cognitive rehabilitation programme developed to remediate attention deficits in adults who have sustained a traumatic brain injury (TBI), incorporating the use of both action video game playing and a compensatory skills programme. Thirty-one male TBI patients, aged 18–65 years, were recruited from 2 Australian brain injury units and allocated to either a treatment or waitlist (treatment as usual) control group. Results showed improvements in the treatment group, but not the waitlist control group, for performance on the immediate trained task (i.e. the video game) and in non-trained measures of attention and quality of life. Neither group showed changes to executive behaviours or self-efficacy. The strengths and limitations of the study are discussed, as are the potential applications and future implications of the research. [ABSTRACT FROM PUBLISHER]

Background: Obesity, eating disorders and unhealthy weight-loss practices have been associated with diminished growth in adolescents worldwide. Interventions that address relevant behavioural dimensions have been lacking in Malaysia. This paper describes the protocol of an integrated health education intervention namely 'Eat Right, Be Positive About Your Body and Live Actively' (EPaL), a primary prevention which aimed to promote healthy lifestyle in preventing overweight and disordered eating among secondary school adolescents aged 13-14 years old.Methods/design: Following quasi-experimental design, the intervention is conducted in two secondary schools located in the district of Hulu Langat, Selangor, Malaysia. Adolescents aged 13-14 years will be included in the study. A peer-education strategy is adopted to convey knowledge and teach skills relevant to achieving a healthy lifestyle. The intervention mainly promoted: healthy eating, positive body image and active lifestyle. The following parameters will be assessed: body weight, disordered eating status, stages of change (for healthy diet, breakfast, food portion size, screen viewing and physical activity), body image, health-related quality of life, self-esteem, eating and physical activity behaviours; and knowledge, attitude and practice towards a healthy lifestyle. Assessment will be conducted at three time points: baseline, post-intervention and 3-month follow-up.Discussion: It is hypothesized that EPaL intervention will contribute in preventing overweight and disordered eating by giving the positive effects on body weight status, healthy lifestyle behaviour, as well as health-related quality of life of peer educators and participants. It may serve as a model for similar future interventions designed for the Malaysian community, specifically adolescents.Trial Registration: UMIN Clinical Trial Registration UMIN000024349 (Date of registration: 11th. October 2016, retrospectively registered). [ABSTRACT FROM AUTHOR]