Search

As a registered psychotherapist and art therapist, my clinical training was primarily based on North American clinical approaches influenced by traditional Euro and western‐centric clinical theories of human behavior. I completed my training feeling certain that traditional clinical mental health practices were not an appropriate fit for racialized communities and could have negative implications for their healing and well‐being. As clinicians, it is our moral obligation to support and enhance the quality of life for marginalized groups. We can do this by challenging our values and knowledge that have been defined and influenced by structures (i.e., education, training, etc.) embedded in these colonial teachings. For this paper, I used a heuristic self‐inquiry research method to investigate these concerns. I interviewed other racialized psychotherapists practicing in Turtle Island (currently mostly occupied by the political entities of Canada and the United States) with the aim to learn how and if decolonization can be used in therapy practice. With this research, I (1) identified a gap in care for racialized communities, (2) questioned if or how a decolonizing approach to care should be considered, (3) explored my discomfort with practitioners in the field that claim their position on decolonizing therapy, practice, and approaches, and lastly (4) propose other ways of knowing that can inform new ways of practicing therapy. The results of this research helped to problematize the language and use of decolonizing therapeutic practices while learning about other concepts that may be relevant yet distinct, such as principles of coloniality/decoloniality. Those of us, therapists or researchers, wanting to disrupt the current practice of therapy need to work together, share knowledge, and challenge each other, so that we can transform the way we practice as psychotherapists. This paper is my contribution to this conversation. Highlights: I interviewed racialized psychotherapists to learn how and if decolonization can be used in therapy.Traditional psychology can lead to ineffective mental health care for racialized communities.I propose other ways of knowing that can inform new therapy practices for racialized communities. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities are more likely to experience sleep problems, which can affect quality of life, physical health, mental health and well‐being. Methods: An integrative literature review was conducted to investigate what is known about behavioural sleep disturbances in people with an intellectual disability. The search used the following databases: Scopus, PsycInfo and Cinahl, to find papers published since 2015. Results: Within intellectual disability research, sleep appears as a common issue due to its high prevalence, negative relationships with an individual's physical and mental health, their quality of life, and impact of sleep problems on family or carers. The growing evidence base appears to support the use of behavioural, lifestyle and pharmacological interventions to improve sleep in people with an intellectual disability. Conclusion: A wide array of literature provides evidence that people with intellectual disabilities are affected by and need support with their sleep. [ABSTRACT FROM AUTHOR]

Background: The COVID‐19 pandemic poses risks to the quality of life (QoL) of relatives of individuals with intellectual disabilities. This paper investigates relatives' QoL and associated risk and buffering factors before and during the pandemic. Method: Surveys were administered to three samples of relatives in the Netherlands in 2019 (N = 105) and during the first waves of COVID‐19 in June (N = 207) and October 2020 (N = 332). Associations between QoL and care burden, care competence, social support, and resilience, and changes over time were analysed using (logistic) regressions. Results: No significant changes in overall QoL nor its domains were found. Care burden was negatively associated with QoL and increased during the pandemic. Care competence was lower than in 2019. Competence, social support, and resilience were positively associated with QoL. Conclusions: Although relatives' QoL remained stable, the pandemic poses non‐negligible risks to their wellbeing. It is, therefore, crucial to provide relatives with adequate support. [ABSTRACT FROM AUTHOR]

Purpose: This paper presents an integrated literature review of the quality of life (QOL) in parents of individuals with Autism Spectrum Disorder (ASD). The rate of ASD is increasing. Parents of children with ASD have higher levels of stress and burden, which may lead to lower QOL. Design and Methods: A comprehensive, electronic search was performed to retrieve 15 relevant articles, including 5565 participants. An integrative review was performed to appraise and synthesize findings. Results: QOL was found to be lower in parents of children with ASD in physical, psychological, and social health and in spirituality, as compared with adults who were not parents of children with ASD. The strongest risk factor for parental QOL was the severity of the diagnosis of ASD. Protective factors for parental QOL were parent education level and levels of severity of ASD in the child. Practice Implications: Nurses can support families impacted by ASD, particularly severe ASD, through tailored resources to support early diagnosis and intervention, through the support of policies affecting low‐income families, and through increased awareness of severe ASD and its' impact on the child and the family. [ABSTRACT FROM AUTHOR]

Supportive counseling and facilitated referrals to support organizations have shown positive effects on mental health and coping with domestic and family violence. However, the reasons why and how such effects are significant remain unknown. The current paper used data from a randomized controlled trial of a psychosocial intervention implemented in Nepal among 140 abused pregnant women. The hypothesized mediating effects of self‐efficacy and social support on mental health and quality of life of abused pregnant women were tested using serial mediation analyses. Significance of parameter estimates and bias‐corrected 95% confidence intervals (CIs) for the indirect effects were generated using bootstrapping. The postintervention changes in self‐efficacy and social support were found to have significant mediating effects on the relationship between the intervention and changes in both mental health and quality of life of participants post intervention. The positive effects on outcomes were seen at follow‐up as well, though to a lesser extent. Further interventions should focus on enhancing abused women's self‐efficacy and social support to ensure their positive mental health and better lives. [ABSTRACT FROM AUTHOR]

COVID‐19 has very publicly had profound impacts on the health system of every country in the world. Over 4.5 million people have lost their lives. School closures worldwide where up to 1.6 billion of the world's children have been out of school, are also prominent in world news. Behind these public impacts are the families. In this paper, we focus on the experiences of families with people with intellectual and developmental disabilities (IDD) through analysis of two data sets: the emerging research literature and contributions from our author team who have lived experience of intellectual and developmental disability in the context of COVID‐19. From these two data sets, we discern five themes of the impact of the pandemic: on health, on education, on services and supports, on families and finally on relationships beyond the family. We conclude with lessons from those living with intellectual and developmental disabilities, the carers and the individuals themselves to draw implications for supporting families in the context of disability during future pandemics. [ABSTRACT FROM AUTHOR]

Background: Rates of physical activity decline throughout adolescence, and evidence indicates that this has an adverse impact on psychological health. This paper aims to synthesise available evidence for physical activity interventions on the mental health and well‐being of young people (11–19 years) from the general population. Method: Nine databases were searched to identify studies published between January 2005 and June 2020: Web of Science, ProQuest Psychology Journals, PsycINFO, Pub Med, ASSIA, CINHAL PLUS, SPORTDiscus, EMBASE and Wiley Online Library. Key search terms included 'physical activity intervention', 'mental health' and 'adolescen*'. Eligible studies were independently screened by two authors based on inclusion/exclusion criteria. Results: Twenty‐eight interventions were narratively synthesised in four categories: Quality of Life (QOL), self‐esteem, psychological well‐being and psychological ill‐being (e.g. depression, stress). A large proportion (67.9%) of interventions were multicomponent and combined physical activity with other features such as health education (e.g. nutrition). However, only a limited number (N = 5) specifically addressed mental health. Findings suggest that interventions are useful in improving psychological well‐being and QOL, yet evidence for self‐esteem is mixed. Conclusions: Although effectiveness in improving well‐being is evident, evidence for a reduction in the frequency and severity of mental health problems is less clear. A summary of the overall impact of physical activity interventions on the mental health of young people is presented. [ABSTRACT FROM AUTHOR]

Objective: Many older people with cancer live with multimorbidity. Little is understood about the cumulative impact of old age, cancer and multimorbidity on self-management. This qualitative systematic review and synthesis aimed to identify what influences self-management from the perspective of older adults living with cancer and multimorbidity.Methods: Six databases were systematically searched for primary qualitative research reporting older adults' experiences of living with cancer and multimorbidity (eg, Medline, Embase, and CINAHL). A thematic synthesis was guided by Shippee's model of cumulative complexity. Text labelled as results in the included papers was treated as data.Results: Twenty-eight studies were included. While the included studies varied in their focus, our analysis highlighted a number of important themes consistent across the studies. Health conditions with the greatest negative impact on independent living assumed the greatest importance, sometimes meaning their cancer was a low priority. Self-management practices seen as likely to interfere with quality of life were deprioritized unless viewed as necessary to maintain independence. When burden outweighed capacity, people were reluctant to ask for help from others in their social network. The contribution of formal healthcare services to supporting self-management was relatively peripheral.Conclusions: Old age and multimorbidity together may complicate self-management after cancer, threatening health and well-being, creating burden and diminishing capacity. Older adults prioritized self-management practices they considered most likely to enable them to continue to live independently. The protocol was registered with Prospero (CRD42018107272). [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]

Accessible Summary: In the past 30 years, many people with (intellectual) learning disabilities have been moved out of large "institutions" and into their own home in their local communityThese people are now often between 30 and 50 years oldWe asked people with learning disabilities aged between 30 and 50 and who are living in their local community what things, including work, that they enjoyed doingWe asked people with learning disabilities aged between 30 and 50 and who are living in their local community whether they felt that they could make decisions about their lifeWe found out the things that make their life good, and also what might stop people enjoying their lifeWe learnt that people with learning disabilities should receive more support to assist them before they retireWe learnt that people with learning disabilities still need more support and choice around who they live with Background: This study investigated perceived quality of life (QoL) of community‐dwelling middle‐aged adults (30–50 years) with an intellectual disability and/or developmental disability living in rural or urban areas in New South Wales and Queensland, Australia. The specific aim of the current paper was to provide a descriptive evidence base of QoL and its specific domains by various key demographic characteristics of middle‐aged individuals. This cohort is likely to have either experienced or reached adulthood during and after large‐scale deinstitutionalisation in Australia. Methods and procedures: A cross‐sectional design was utilised, based on the QoL‐Q survey, testing domains of satisfaction; Competence/Productivity; Empowerment/Independence; and social belonging/community integration. The survey included demographic questions and was distributed to participants through disability support agencies across two states. The final sample included 291 respondents. Results: The overall QoL‐Q scores ranged from 3.0 to 29.5 (Mean = 20.4, SD, 4.1), with considerable variation in mean scores both across and within domains. The two demographic areas that showed greatest predictive value for QoL were work status and accommodation issues. The loss of agency and control in choice of co‐residents influenced perceived QoL for empowerment and independence domain of QoL‐Q. Conclusions: The findings highlight QoL issues associated with policy decisions and support programmes for middle‐aged adults. The two key recommendations arising from the project are that future planning for post‐retirement or reduced working hours needs to commence at a much younger age than currently expected, and more attention needs to focus on facilitating individual decision‐making and choice within shared accommodation options. [ABSTRACT FROM AUTHOR]

Aim: To: (1) investigate the relationship between upper-limb impairment and health-related quality of life (HRQoL) for children with cerebral palsy and (2) develop a mapping algorithm from the Cerebral Palsy Quality of Life Questionnaire for Children (CPQoL-Child) onto the Child Health Utility 9D (CHU9D) measure.Method: The associations between physical and upper-limb classifications and HRQoL of 76 children (40 females, 36 males) aged 6 to 15 years (mean age 9 years 7 months [SD 3y]) were assessed. Five statistical techniques were developed and tested, which predicted the CHU9D scores from the CPQoL-Child total/domain scores, age, and sex.Results: Most participants had mild impairments. The Manual Ability Classification System (MACS) level was significantly negatively correlated with CHU9D and CPQoL-Child (r=-0.388 and r=-0.464 respectively). There was a negative correlation between the Neurological Hand Deformity Classification (NHDC) and CPQoL-Child (r=-0.476, p<0.05). The generalized linear model with participation, pain domain, and age had the highest predictive accuracy.Interpretation: The weak negative correlations between classification levels and HRQoL measures may be explained by the restricted range of impairment levels of the participants. The MACS and NHDC explained the impact of upper-limb impairment on HRQoL better than the other classifications. The generalized linear model with participation, pain, and age is the suggested mapping algorithm. The suggested mapping algorithm will facilitate the use of CPQoL-Child for economic evaluation and can be used to conduct cost-utility analyses.What This Paper Adds: The Manual Ability Classification System and Neurological Hand Deformity Classification were the best predictors of health-related quality of life measures. Age and Cerebral Palsy Quality of Life Questionnaire for Children participation and pain domain scores can predict Child Health Utility 9D scores. [ABSTRACT FROM AUTHOR]

Aim: To evaluate fatigue, depression, and quality of life (QoL) of children with multiple sclerosis and compare to other acute demyelinating syndromes (ADS).Method: Children followed in the National Referral Centre of rare inflammatory brain and spinal diseases were included in this study. The Expanded Disability Status Scale, the fatigue severity scale, the Multiscore Depression Inventory for Children, and the Pediatric Quality of Life Inventory were used for evaluation.Results: Thirty-seven children (23 females, 14 males) were included in this study. Multiple sclerosis was diagnosed in 26 children and ADS in 11 children. Although not significant, severe fatigue was less frequently reported by patients with multiple sclerosis than children with ADS (44% vs 63%, p=0.2). Depression was reported more often in the multiple sclerosis group compared to the ADS group (24% vs 18%, p=0.6). Concerning the QoL in patients with multiple sclerosis, both parents and children reported poor emotional and school functioning. Physical and social functioning were rated as being good in both groups, and was significantly higher in the children's group (p=0.007).Interpretation: This study highlights the importance of fatigue and depression in children with ADS and particularly in paediatric onset multiple sclerosis. Moreover, difficulties in school and emotional functioning were the main concerns for parents and children in the multiple sclerosis group which need to be taken in account during their care and treatment proposal.What This Paper Adds: Invisible signs such as fatigue and depression affect all forms of acute demyelinating syndromes (ADS) in children. Depression seems to be higher in children with multiple sclerosis than with other forms of ADS. Fatigue seems to be lower in children with multiple sclerosis than with other forms of ADS. Children with multiple sclerosis and their parents are most concerned with emotional and academic functioning. [ABSTRACT FROM AUTHOR]

Mental health courts (MHCs) use a collaborative justice approach to provide a therapeutic alternative to the traditional justice process for defendants with mental illnesses directly relevant to their alleged criminal offenses. MHCs have proliferated in recent years, in light of early research reports documenting their successes. The aim of this paper is to provide further evaluation of the effects of MHCs by evaluating the impact of the Sacramento County MHC in California. We analyzed quantitative data and conducted interviews with stakeholders and MHC participants to understand how the MHC influenced individual participants' recidivism rates, mental health, and quality of life. Results from the quantitative data analysis indicate that defendants had a lower rate of recidivism after the MHC program than before it. Moreover, graduates were less likely to be rearrested and rehospitalized than non-graduates. Qualitative analyses revealed several core themes regarding participants' views on facilitators and barriers related to the MHC's success. These findings provide further insights into the effectiveness of MHCs. [ABSTRACT FROM AUTHOR]

Accessible summary: Dialectical Behaviour Therapy (DBT) is a therapy to help people manage their feelings.We ran a DBT group for people with an intellectual disability. The group seemed to help people feel better and manage their feelings, even after the group ended.The group was 2 years ago. We talked to three people who went to the group to see what people still remembered from the group and if DBT was still helping them.We think having a top‐up session might help people to remember and practise ideas from the group. Background: This paper reports quantitative and qualitative follow‐up data from three participants who attended a Dialectical Behaviour Therapy (DBT) group for people with an intellectual disability. Materials and Methods: Quantitative data regarding psychological well‐being, psychological distress (measured using the Psychological Therapies Outcome Scales; PTOS) and quality of life (measured using the Health of the Nation Outcome Scales—Learning Disability; HONOS‐LD) are reported for pre‐group, post‐group and at 6‐month and 2‐year follow‐up. Interviews were conducted with participants post‐group and at 2‐year follow‐up. Data were analysed using thematic analysis. Results: Improvements in scores on measures of psychological well‐being, psychological distress and quality of life appear to be maintained at 6‐month follow‐up, but scores at 2‐year follow‐up suggest a return to baseline. Qualitative self‐report data suggest a number of interesting ways participants adapted and individualised techniques from the group, as well as suggesting possible barriers to maintaining change in the longer term. Conclusions: Clinical implications are considered to improve effectiveness of similar interventions, as well research implications in order to improve knowledge about the longer term impact of group DBT interventions. [ABSTRACT FROM AUTHOR]

Aim: This case-control study examined the long-term consequences of surgical correction for ventricular septal defect (VSD; the most common congenital heart defect) in infancy. It assessed children who had undergone VSD surgery and the factors related to maternal conditions, surgery, and hospital stay.Method: Thirty-nine children (23 females, 16 males; age range 6y 1mo-9y 7mo [mean 7y 4mo, SD 1y]) with repaired isolated, non-syndromic, non-genetic VSD were compared with 39 typically developing children (22 females, 17 males; age range 6y-9y 2mo [mean 7y 3mo, SD 10mo]). The children completed behavioural tests of neurodevelopment and a quality of life (QoL) questionnaire. Mothers rated children's emotional/behavioural symptoms and QoL. Measures of maternal parenting behaviour and psychopathology were treated as moderators.Results: Affected children showed reduced language skills (p=0.002) unless mothers reported high parenting behaviour subscale scores (p=0.04). Children's anxiety symptoms were elevated when mothers had anxiety symptoms (p=0.01). Longer hospital stay was associated with lower intelligence (p=0.003) and psychomotor scores (p=0.006). Longer scars predicted elevated child anxiety (p=0.008), and age at surgery and QoL were inversely related (p=0.01).Interpretation: Impairments could be mitigated if VSD repair was performed early in life with a relatively small scar and uncomplicated hospital stay. This outcome depends on maternal parenting behaviour and anxiety symptoms.What This Paper Adds: Children's cognitive and psychomotor development after surgical ventricular septal defect repair was unimpaired. Children showed no mental health restrictions when their mothers reported few anxiety symptoms themselves. Language impairments might be preventable by pro-active parenting. The outcome also depends on variables related to surgery and hospital stay. [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]

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]

Summary: Given the significant impact that psychosocial factors and epilepsy treatments can have on the health‐related quality of life (HRQOL) of individuals with epilepsy and their families, there is great clinical interest in the role of psychological evaluation and treatments to improve HRQOL and comorbidities. Therefore, the International League Against Epilepsy (ILAE) charged the Psychology Task Force with the development of recommendations for clinical care based on evaluation of the evidence from their recent Cochrane review of psychological treatments in individuals with epilepsy. The literature search for a recent Cochrane review of randomized controlled trials investigating psychological treatments for individuals with epilepsy constitutes the key source of evidence for this article. To provide practical guidance to service providers, we provide ratings on study research designs based on (1) the American Academy of Neurology's Level of Evidence system and (2) the Grading of Recommendations, Assessment, Development, and Evaluation system. This paper is the culmination of an international collaboration process involving pediatric and adult psychologists, neurologists, psychiatrists, and neuropsychiatrists. The process and conclusions were reviewed and approved by the ILAE Executive Committee. The strongest evidence for psychological interventions was identified for the most common mental health problems, including depression, neurocognitive disturbances, and medication adherence. Psychological interventions targeting the enhancement of HRQOL and adherence and a decrease in comorbidity symptoms (anxiety, depression) should be incorporated into comprehensive epilepsy care. There is a range of psychological strategies (ie, cognitive behavioral therapy and mindfulness‐based therapies) that show promise for improving the lives of persons with epilepsy, and clinical recommendations are provided to assist epilepsy health care providers in treating the comorbidities and challenges associated with epilepsy and its treatments. [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]

Objective: Distress screening programs aim to ensure appropriate psychooncological support for cancer patients, but many eligible patients do not use these services. To improve distress management, we need to better understand patients' supportive care needs. In this paper, we report the first key finding from a longitudinal study that focused on patients' intentions to use psychooncological support and its association with distress and uptake of the psychooncology service.Methods: We conducted a prospective, observational study in an Oncology Outpatient Clinic and assessed distress, intention to use psychooncological support, and uptake of the psychooncology service by using the Distress Thermometer, a semistructured interview, and hospital records. We analyzed data with a mixed-methods approach.Results: Of 333 patients (mean age 61 years; 55% male; 54% Distress Thermometer ≥ 5), 25% intended to use the psychooncology service (yes), 33% were ambivalent (maybe), and 42% reported no intention (no). Overall, 23% had attended the psychooncology service 4 months later. Ambivalent patients reported higher distress than patients with no intention (odds ratio = 1.18, 95% confidence interval [1.06-1.32]) but showed significantly lower uptake behavior than patients with an intention (odds ratio = 14.04, 95% confidence interval [6.74-29.24]). Qualitative analyses revealed that ambivalent patients (maybe) emphasized fears and uncertainties, while patients with clear intentions (yes/no) emphasized knowledge, attitudes, and coping concepts.Conclusions: We identified a vulnerable group of ambivalent patients with high distress levels and low uptake behavior. To optimize distress screening programs, we suggest addressing and discussing patients' supportive care needs in routine clinical practice. [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]

Objectives: The original 24-item Attitudes to Aging Questionnaire (AAQ) is well established as a measure of attitudes to aging, comprising domains of psychosocial loss (PL), physical change (PC), and psychological growth (PG). This paper presents a new 12-item short form Attitudes to Aging Questionnaire (AAQ-SF).Methods: The original field trial data used to develop the 24-item AAQ (AAQ-24) were used to compare 6-item, 9-item, and 12-item versions of AAQ-SF (sample 1, n = 2487) and to test the discriminative validity of the selected 12-item AAQ-SF (sample 2, n = 2488). Data from a separate study reporting on the AAQ-24 (sample 3, n = 792) verified the analyses.Results: The 12-item AAQ-SF reported adequate internal consistency in both sample 1 (PL α = .72, PC α = .72, and PG α = .62) and sample 3 (PL α = .68, PC α = .73, and PG α = .61). The AAQ-SF functioned consistently with the profile of the AAQ-24 in that subscales in both formats of this measure discriminate between respondents on key parameters such as depression, subjective health status, and overall quality of life in sample 2. Sample 3 also demonstrated the AAQ-SF can detect the differences in attitudes toward aging between individuals experiencing anxiety and depression and those without psychological symptoms. Confirmatory factor analysis confirmed that the structure of the AAQ-SF mirrors that of the original 24-item AAQ.Conclusions: The AAQ-SF is a robust measure of attitudes toward aging, which can reduce respondent burden when used within longer questionnaire batteries or longitudinal research. Copyright © 2017 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

The aim of this systematic review was to describe the association between adolescent sense of coherence ( SOC) and health and identify the future direction for research in this area. Systematic searches were conducted (2007-2014) in the PubMed, CINAHL, Psyc INFO and Cochrane electronic databases and carried out manual searches in three scientific journals. A total of 827 original papers were found and 23 were selected. Based on the results, adolescents' sense of coherence ( SOC) was related to health in terms of the adolescents' quality of life, health behaviour, mental health and family relationships by using 31 different health-related instruments. In conclusion, the use of the SOC approach for adolescents can provide a useful view of their health during this transition phase to adulthood. Due to the large variation in the additional instruments used, combining and comparing the results proved challenging. More comparative and longitudinal research is needed to increase understanding of adolescents' health in relation to SOC and develop services that support both elements. [ABSTRACT FROM AUTHOR]

Objective: Palliative care for dementia includes psychosocial interventions as first-line treatment for challenging behaviour. However, the national dementia plan in Japan contradicts recommendations for palliative care for dementia. This study aimed to examine the association between care quality for patients with dementia and professional caregivers' perspectives regarding palliative care for dementia in Japanese community care settings.Methods: In total, 2116 professional caregivers from 329 agencies (217 in-home long-term care support providers; 29 small-scale, multiple home-care providers; and 83 group homes) in Tokyo prefecture, Japan, completed cross-sectional, paper-based questionnaires about 3603 people diagnosed with dementia, in May 2016. Quality of care measures included physical restraint and antipsychotic medication use and quality of life. Patients' quality of life was assessed via the Japanese version of the Alzheimer's Disease Health-related Quality of Life scale. The Japanese version of the Questionnaire on Palliative Care for Advanced Dementia was used to assess professional caregivers' knowledge and attitudes regarding palliative care for dementia.Results: Professional caregivers' knowledge and attitudes regarding palliative care for dementia were positively associated with quality of life in patients with dementia. Physical restraint and antipsychotic medication were used regardless of professional caregivers' knowledge and attitudes.Conclusions: Professional caregivers' perspectives regarding palliative care for dementia could have exerted a positive effect on quality of life in patients with dementia. A national strategy for advocacy and the protection of adults is required to integrate several laws and guidelines and prevent the use of antipsychotics as a form of chemical restraint. Copyright © 2016 John Wiley & Sons, Ltd. [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]

Objectives: To (1) evaluate existing eHealth/mHealth interventions developed to help manage cancer-related fatigue (CRF); and (2) summarize the best available evidence on their effectiveness.Methods: A comprehensive literature search of PubMed, MEDLINE, EMBASE, and the Cochrane Library up to November 2016 was conducted. Study outcomes were extracted, tabulated, and summarized. Random effects meta-analyses were conducted for the primary outcome (fatigue), and the secondary outcomes quality of life and depression, yielding pooled effect sizes (r), and 95% confidence intervals (CI).Results: For eHealth interventions, our search of published papers identified 9 completed studies and 6 protocols for funded projects underway. No studies were identified for mHealth interventions that met our inclusion criteria. A meta-analysis of the 9 completed eHealth studies revealed a statistically significant beneficial effect of eHealth interventions on CRF (r = .27, 95% CI [.1109 - .4218], P < 0.01). Therapist-guided eHealth interventions were more efficacious then self-guided interventions (r = .58, 95% CI: [.3136 - .5985, P < 0.001). Small to moderate therapeutic effects were also observed for HRQoL (r = .17, 95% CI [.0384 - .3085], P < 0.05) and depression (r = .24, 95% CI [.1431 - .3334], P < 0.001).Conclusions: eHealth interventions appear to be effective for managing fatigue in cancer survivors with CRF. Continuous development of eHealth interventions for the treatment of CRF in cancer survivors and their testing in long-term, large-scale efficacy outcome studies is encouraged. The degree to which mHealth interventions can change CRF in cancer survivors need to be assessed systematically and empirically. [ABSTRACT FROM AUTHOR]

Food allergy is an increasing phenomenon in Australia, with most recent reports of food allergy occurring in 1 in 12 children. A number of studies have demonstrated that children and adolescents with food allergies experience a decreased quality of life across a number of domains. More recent evidence suggests that this population also experiences an increased occurrence of bullying compared to similar school-aged children. Some individuals have reported being bullied because of their allergies, whilst others have reported specific allergy-related-bullying, such as being touched with foods that they are allergic to or having their food being intentionally contaminated with an allergen. Where there may be a risk of severe anaphylaxis, this is of great concern. This article reviews the current literature on bullying in populations of children and adolescents with food allergies. Several papers worldwide have investigated this, providing evidence of its occurrence in North America, Canada, Italy and Japan. [ABSTRACT FROM AUTHOR]

Motivated by the analysis of quality of life data from a clinical trial on early breast cancer, we propose in this paper a generalized partially linear mean-covariance regression model for longitudinal proportional data, which are bounded in a closed interval. Cholesky decomposition of the covariance matrix for within-subject responses and generalized estimation equations are used to estimate unknown parameters and the nonlinear function in the model. Simulation studies are performed to evaluate the performance of the proposed estimation procedures. Our new model is also applied to analyze the data from the cancer clinical trial that motivated this research. In comparison with available models in the literature, the proposed model does not require specific parametric assumptions on the density function of the longitudinal responses and the probability function of the boundary values and can capture dynamic changes of time or other interested variables on both mean and covariance of the correlated proportional responses. Copyright © 2017 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Aim This paper intends to compare quality of life (QoL) and mental health among pregnant women with and without previous pregnancy loss. Methods An analytical cross-sectional study was conducted on 409 women between the 16th and 30th weeks of gestation in health centers in Ahvaz, Iran, including 145 women with prior pregnancy loss (group 1) and 264 women without such history (group 2). Data were collected using the QoL Short Form-36 questionnaire, the Mental Health Questionnaire 25 and a questionnaire for assessing sociodemographic variables. Data were analyzed using spss version 22. Results were analyzed using the χ2-test, the Student's t-test and logistic regression. P < 0.05 was defined as statistically significant. Results There was a significant difference between the two groups in respect to QoL and mental health. Women with previous pregnancy loss had lower scores in total and in all subscales of the QoL Short Form-36 ( P < 0.001) and higher scores in total and in six out of the nine subscales of the Mental Health Questionnaire 25 compared to women without these histories. Conclusion Women with history of spontaneous abortion and stillbirth seem to have poorer QoL and mental health during their subsequent pregnancy than those without such experience. [ABSTRACT FROM AUTHOR]

A bstract People with vision-threatening diabetic retinopathy are likely to experience enhanced social and emotional strain. Critically, those with both vision-threatening diabetic retinopathy and psychosocial problems may have significantly reduced levels of functioning compared with psychologically healthy counterparts. This can cause inadequate compliance, increased strain on family functioning, worse diabetes control, increased progression of diabetic retinopathy and, consequently, further psychosocial stress resulting in a number of concerning implications for disease management, clinical outcomes and healthcare costs. However, the emotional and social health consequences of diabetic retinopathy have not yet been systematically explored. This information is crucial as it allows for a targeted approach to treatment and prevention and avoidance of the potentially detrimental implications described above. Therefore, this paper reviews the current qualitative and quantitative evidence regarding the social and emotional impact of diabetic retinopathy and identifies directions for future research. Key search terms were applied to the electronic databases Pubmed, ISI Web of Science and Embase and the bibliographies of relevant papers were systematically reviewed for additional references. Overall, the evidence suggests that diabetic retinopathy and associated vision loss have several debilitating effects, including disruption of family functioning, relationships and roles; increased social isolation and dependence; and deterioration of work prospects resulting in increased financial strain. Adverse emotional responses include fear, anxiety, vulnerability, guilt, loss of confidence, anger, stress and self-perception issues. However, the research to date is largely qualitative in nature, with most quantitative studies being small, cross-sectional and somewhat outdated. Similarly, the outcome measures used in many studies to date are suboptimal in terms of content and validity. Therefore, this review identifies the need for improved outcome measures to provide valid, meaningful measurement of the social and emotional impact of diabetic retinopathy and discusses potential directions for future research such as item banking and computer adaptive testing. [ABSTRACT FROM AUTHOR]

Background Psoriasis has a strong impact on quality of life and the viewpoints of patients and physicians are necessary for satisfactory therapy. Aim To inform dermatologists on what represents ‘living with psoriasis’. Methods We conducted a research using Medline with the following keywords: psoriasis, quality of life. Forty-one papers were selected from a total of 369 papers. Results As with other major medical chronic disorders, psoriasis has a severe impact on the life of patients. Patients with palmoplantar, pustular and arthropathic psoriasis are more likely to have a poorer quality of life. Emotionally charged body regions, e.g. the scalp, face, neck, forearms, hands and genital region, have a specific and significant impact. Living with psoriasis is to live with its symptoms, especially pruritus, and to live in vulnerable social isolation. Conclusions As psoriasis has a strong impact on quality of life because of extensive skin involvement, clinical management should take these two criteria into account when making therapeutic decisions. The strong impact of new treatments on patient-related outcomes probably leads to the conclusion that they improve life with psoriasis. Nevertheless, it is important to highlight that even a successful treatment does not impact on the psychological distress of the patients, the patients’ beliefs about psoriasis or their coping with the disease. [ABSTRACT FROM AUTHOR]

Background The COPE-ICD (Copenhagen Outpatient ProgrammE-implantable cardioverter defibrillator) trial studied comprehensive cardiac rehabilitation for patients with ICDs. The purpose of this paper was to explore: (1) gender differences in self-rated health and quality of life (QoL) at hospital discharge after ICD implantation, (2) gender differences in effect of cardiac rehabilitation, and (3) predictors of effect of cardiac rehabilitation. Methods Patients with first-time ICD implantation were randomized to comprehensive cardiac rehabilitation versus usual care. Gender differences in self-rated health and QoL and effect of rehabilitation were tested using t-tests. Predictors of effect of rehabilitation were tested using logistic regression. Results A total of 196 patients (mean age 58 ± 13 years; 155 men, 41 women) were included. At hospital discharge, significant differences were found in physical component scale, mental component scale, social functioning, physical functioning, bodily pain, vitality, mental health, and QoL with men having higher scores. Among men only, significant differences were found in VO2 (rehabilitation: 20.9 mL/min/kg [standard deviation (SD) 8.1] vs 23.4 mL/min/kg [SD 9.5] and usual care: 22.1 mL/min/kg [SD 8.1] vs 21.8 mL/min/kg [SD 8.3], P = 0.01), total exercise time (rehabilitation: 587.0 seconds [SD 249.6] vs 650.7 seconds [SD 279.8] and usual care: 613.8 seconds [SD 264.7] vs 606.1 seconds [SD 277.3], P = 0.01), and the mental component scale (rehabilitation: 47.7 points [SD 10.1] vs 54.8 points [7.1] and usual care: 48.1 points [SD 10.9] vs 51.9 points [SD 9.6], P = 0.05). Conclusions After ICD implantation, significant gender differences were found in physical health, mental health, and QoL. Effects of rehabilitation were found among men only and gender predicted effect of rehabilitation on the mental component scale. [ABSTRACT FROM AUTHOR]

Quinn N, Shulman A, Knifton L, Byrne P. The impact of a national mental health arts and film festival on stigma and recovery. This study aims to evaluate the impact of a national mental health arts festival for the general public, encompassing a wide variety of art forms and themes. An evaluation was undertaken with 415 attendees from 20 different events, combining qualitative and quantitative approaches. The findings demonstrate positive impact on the relationship between arts and mental health. Events increased positive attitudes, including positive representations of people's contributions, capabilities and potential to recover. They did not decrease negative attitudes. Intended behaviour change was modest and one film event increased audience perceptions of dangerousness. The paper argues that the arts can change stigma by constructing shared meanings and engaging audiences on an emotional level. Carefully programmed, collaborative, community-based arts festivals should form an integral part of national programmes to address stigma and to promote mental health and wellbeing, alongside traditional social marketing and public education approaches. [ABSTRACT FROM AUTHOR]

Background This paper focuses on the transition to supported employment for people with intellectual disabilities paying particular attention to the impact of job breakdown on psychological well-being; an issue often omitted from studies. Materials and Methods Forty-nine people with intellectual disabilities were interviewed within 3 months of entering supported employment and 9–12 months later. Data collection involved in-depth interviews with people with intellectual disabilities, their carers and employers and completion of a self-report measure of depression and anxiety (an adapted form of the Hospital Anxiety and Depression Scale), and a self-report measure of quality of life (the ComQol). Results By time of the follow-up interviews, 13 of the 49 jobs had broken down. Analysis of scores measuring quality of life, anxiety and depression showed no effect for loss of employment. However, interviews with participants indicated that job loss had a considerable impact on those affected. Conclusions There were a wide range of reasons for job breakdown, many of which were particular to the circumstances of people with intellectual disabilities. Although job breakdown does not have an impact of anxiety or depression many participants found job loss traumatic. [ABSTRACT FROM AUTHOR]

The idea that expanding work and consumption opportunities always increases people's wellbeing is well established in economics but finds no support in psychology. Instead, there is evidence in both economics and psychology that people's life satisfaction depends on how experienced utility compares with expectations of life satisfaction or decision utility. In this paper I suggest that expanding work and consumption opportunities is a good thing for decision utility but may not be so for experienced utility. On this premise, I argue that people may overrate their socioeconomic prospects relative to real life chances and I discuss how systematic frustration over unfulfilled expectations can be connected to people's educational achievement. I test the model's predictions on Italian data and find preliminary support for the idea that education and access to stimulating environments may have a perverse impact on life satisfaction. I also find evidence that the latter effect is mediated by factors such as gender and age. Indeed, the model seeks to go beyond the Italian case and provide more general insights into how age/life satisfaction relationships can be modelled and explained. [ABSTRACT FROM AUTHOR]

Aim. This paper is a report of a study to examine the degree to which socio-demographic variables, clinical variables and health-related quality of life are related to perceptions of disease severity and changes in disease severity in patients with multiple sclerosis. Background. Studies have shown that patients with multiple sclerosis report lower quality of life than the general population. Method. Questionnaires measuring health-related quality of life and perceived multiple sclerosis severity were mailed twice, 1 year apart, in May/June of 2000 and 2001, (t1 and t2), to patients with confirmed multiple sclerosis in Oslo, Norway ( n = 502). Clinical data about disease onset and course were retrieved from the Oslo City Multiple Sclerosis Registry. Findings. Among the 313 (62·4%) people who responded at both times, those with primary progressive disease course reported higher perceived multiple sclerosis severity ( P < 0·001), more mental health problems ( P = 0·004) and lower physical functioning ( P < 0·001) than those with a relapsing remitting/secondary progressive disease course. Patients with primary progressive disease course reported higher mean scores for multiple sclerosis severity at t2 than at t1. Multivariate regression analysis showed that social functioning was the only factor with statistically significant relationships to perceived multiple sclerosis severity among all sub-domains of health-related quality of life or personal factors. However, physical impairment was also independently related to patients' ratings of changes in multiple sclerosis severity during the year and illness severity 1 year later. Conclusion. In addition to patients' physical impairment, healthcare workers should pay special attention to issues related to their social functioning. [ABSTRACT FROM AUTHOR]

Schizophrenia may lead to impairments in many aspects of life, including physical, cognitive, and role functioning. The subjective quality of life of people with schizophrenia has been shown to be lower than in the general population and appropriate patient-assessed health outcome measures are necessary to capture the distress and disability experienced by people living with a serious mental illness. Although psychiatry has been slow to become involved in quality of life measurement, the use of quality of life instruments has now been recognized as a means of evaluating the outcome of care interventions, in terms of symptoms and functioning. This paper evaluates the effectiveness of two widely used instruments: The Medical Outcomes Study Short Form Health Survey (SF-36) and The Lancashire Quality of Life Profile (LQoLP) in terms of reliability and validity in measuring the quality of life of people with schizophrenia. The LQoLP appeared to be best suited for evaluation of care programmes, whereas the SF-36 was more appropriate for medical trials, comparisons between patient groups, and assessment of the direct consequences of treatment on health and function. Subjective quality of life should, however, be considered to be distinct from clinical status and quality of life assessment should include the broadest range of indicators, to reflect the holistic ethos of mental health nursing. [ABSTRACT FROM AUTHOR]

Health status is an important domain of quality of life of people with intellectual disabilities. This paper describes the development of a self-report health status measure for use with people with intellectual disabilities living in staffed community-based accommodation, and reports preliminary reliability data for the schedule.Question and response items were adapted from a well-established measure (SF-36) used in the general population incorporating subscales such as General Health, Physical Functioning, Bodily Pain, Vitality, Mental Health, and Sensory Functioning. A variety of closed and open response formats were used based on the growing literature examining methods for interviewing people with intellectual disabilities.Internal reliability and response consistency were investigated. Reliability for Physical Functioning, General Health and Bodily Pain was reasonable, but was unsatisfactory for Sensory Functioning, and Mental Health.The findings are discussed in light of the challenge of eliciting reliable responses from people with intellectual disabilities. Question methodologies can be built upon in further research. [ABSTRACT FROM AUTHOR]

Palliative care aims at improving the patient's quality of life. Clinical trials, therefore, often include the patient's subjective evaluation of symptoms and psychosocial problems, so-called health-related quality of life (HRQL), as end-points. Unfortunately, there are frequently methodological weaknesses in the assessment of HRQL. This paper discusses four criteria which can be used in the evaluation of the quality of such studies: I. The authors should document that they have included the relevant HRQL issues in the questionnaire. If a trial misses important issues, its results may be misleading. II. The sample size should be sufficient to detect meaningful differences. Many trials are too small. III. The assessment of HRQL should have the appropriate timing, reflecting the research questions. The symptoms and the benefit resulting from treatments are not constant over time and often have cyclic patterns. The results may therefore be dependent on the timing of the administration of questionnaires to patients and on the time frames specified in the instructions. IV. The data must be reasonably complete. Incomplete data cannot be avoided in palliative care research, but missing data due to administrative failures or unrealistic schedules must be avoided. A pilot study may show whether a study is feasible. Missing data are likely to bias results. Many published palliative care studies are suboptimal with regard to one or more of these four criteria. This should be considered when reading published studies and when new trials are planned. [ABSTRACT FROM AUTHOR]

John Lind, Professor of Pediatrics at the Karolinska Institute, emphasized that ‘the family is born in the maternity hospital.’ He had a warm concern for all parents and infants and was extremely influential in both pediatric and child-rearing practices in Sweden and in the promotion of infant and caregiver-infant interaction research. Lind initiated and/or stimulated the scientific study of the infant's cry, parent-infant interactions, the role of the father in the perinatal environment, fetal and neonatal perception, and perinatal hospital practices. In many respects, his work predated contemporary emphases on perinatal coaching programs, social support (doula) during labor and delivery, parent education on childrearing, the use of ethnographic data for contemporary perinatal practices, interdisciplinary, team approaches to study of infant care and development, changes in newborn nursery practices, and, above all, care and sensitivity to the initial synchronization of the parent-infant interaction system. This paper honors John Lind's contributions to our knowledge of infant development and parent-infant interaction, his influences on the field of pediatrics and the interdisciplinary study of infancy, and his commitment to enhancement of the quality of life for infants and their families. Although his life has ended, his ideas will continue to inspire and challenge the study of early human development for many years to come. [ABSTRACT FROM AUTHOR]

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]

The article comments on the effect of age on quality of life in implantable cardioverter defibrillator recipients. Given the ubiquity of quality of life measures in health research it may seem nonsensical to claim that it was invented in 1966, but analysis of one of the author gives this as the date on which the very first paper to address the quality of life was published in the medical literature. Researchers describe the SF-36 as measuring important health concepts such as physical and mental health and health transition.

Introducing a new department in the Australian Occupational Therapy Journal: Critically Appraised Papers or CAPs. This department arose from a demand for critical appraisal of relevant research literature to keep occupational therapists up-to-date with advances related to practice. The broad aim is to publish two CAPs on a theme; one an RCT or systematic review, the other qualitative research. Each CAP will consist of a structured abstract of the content of the research and a commentary completed by an expert in the field. The commentary will critically appraise the research, place it in context with existing research and discuss practice implications. [ABSTRACT FROM AUTHOR]