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Purpose: This study compared a tablet PC questionnaire with a paper method for reliability and patient preferences in the acquisition of patient-reported outcomes (PROs) for patients treated with radiotherapy. By comparing the two modes of PRO administration, we aimed to evaluate the adequacy of using tablet PC questionnaires in future clinical use.Methods: Patients were randomized in a crossover study design using two different methods for PRO entry. A group of 89 patients answered a paper questionnaire followed by the tablet PC version, whereas 89 patients in another group completed the tablet PC questionnaire followed by the paper version. Surveys were performed four times per patient throughout the course of the radiotherapy. The Korean versions of the M.D. Anderson Symptom Inventory (MDASI-K) and the Brief Fatigue Inventory (BFI-K) were used. The primary endpoint of our current study was an assessment of patient preference for the survey method. The proportions of patients preferring each mode of questionnaire were evaluated.Results: The proportion of patients who preferred the tablet PC version, paper form, or who had no preference was 52.2, 22.1, and 25.7 %, respectively. More than half of the patients preferred the tablet PC to the paper version in all four surveys. Age, gender, educational status, prior experience of using a tablet PC, and the order of paper to tablet PC administration did not impact patient preferences. Inter-class correlation coefficients (ICCs) between the modes were 0.92 for MDASI-K and 0.94 for BFI-K and ranged from 0.91 to 0.96 on both instruments during the four surveys.Conclusions: A tablet PC-based PRO is an acceptable and reliable method compared with paper-based data collection for Korean patients receiving radiotherapy. [ABSTRACT FROM AUTHOR]

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]

Background: Accurate quantification of pain in a clinical setting is vital. The use of an electronic pain scale enables data to be collected, analyzed, and utilized much faster compared with traditional paper-based scales. The advancement of smart technology in pediatric and adult pain evaluation may offer opportunities to introduce easy-to-use and reliable pain assessment methods within different clinical settings. If promptly introduced within different pediatric and adult pain clinic services, validated and easily accessible mobile health pain apps may lead to early pain detection, promoting improvement in patient's quality of life and leading to potentially less time off from school or work.Objective: This cross-sectional observational study aimed to investigate the interchangeability of an electronic visual analog scale (eVAS) app with a traditional paper visual analog scale (pVAS) among Australian children, adolescents, and adults for pain evaluation.Methods: Healthy participants (age range 10-75 years) were recruited from a sporting club and a secondary school in Melbourne (Australia). The data collection process involved application of pressure (8.5 kg/cm2) from a Wagner Force Dial FDK 20 to the midpoint of the thumb. The pressure was applied twice with a 5-minute interval. At each pressure application, participants were asked to randomly record their pain perception using the "eVAS" accessible via the "Interactive Clinics" app and the traditional pVAS. Statistical analysis was conducted to determine intermethod and intramethod reliabilities.Results: Overall, 109 healthy participants were recruited. Adults (mean age 42.43 years, SD 14.50 years) had excellent reliability, with an intraclass correlation coefficient (ICC) of 0.94 (95% CI 0.91-0.96). Children and adolescents (mean age 13.91 years, SD 2.89 years) had moderate-to-good intermethod and intramethod reliabilities, with an ICC of 0.80 (95% CI 0.70-0.87) and average ICC of 0.80 (95% CI 0.69-0.87), respectively.Conclusions: The eVAS app appears to be interchangeable compared with the traditional pVAS among children, adolescents, and adults. This pain evaluation method may offer new opportunities to introduce user-friendly and validated pain assessment apps for patients, clinicians, and allied health professionals. [ABSTRACT FROM AUTHOR]

Background: Sonder's In-Home Withdrawal Service (IHWS) has been providing a unique home-based, multidisciplinary, wraparound withdrawal option for people with low-to-moderate levels of substance dependence since September 2019. This paper provides an evaluation of the service's overall impact on reducing substance use among clients through the delivery of this innovative service model. The evaluation explores the acceptability and feasibility of the service via client, stakeholder, and staff perspectives. Methods: A mixed-method design was used to evaluate the IHWS. Descriptive analysis of quantitative data was conducted using clinical assessments from client records and online feedback surveys. Qualitative data from client, staff, and stakeholder feedback surveys were analysed thematically. Results: Overall, 1166 referrals were received over the lifespan of the service, and a data set of 96 clients was included in the analysis. Self-reported measures showed that most clients decreased their substance use (89%), improved their psychological health status (75%), improved their physical health (65%), improved their quality of life (69%), and improved their understanding and ability to manage their alcohol and other drugs (AOD) use (84%). Client feedback suggests the service is providing a unique option for AOD withdrawal. Stakeholders commend the service's home-based setting, multidisciplinary and person-centred approach to care, and recommended expansion of the service to increase access for clients and reduce demand on inpatient settings. Conclusions: The IHWS is having a significant impact in reducing substance use and highlights the need for increased access to holistic approaches to withdrawal. This includes pre- and post-withdrawal support and the inclusion of multidisciplinary teams, and engaging lived experience practitioners. A focus on funding primary-based services is required to meet the rising costs of tertiary-based care and to better meet the needs of consumers. Individuals with low-to-moderate levels of substance dependence require targeted services to safely manage their withdrawal. This paper evaluates a holistic approach to withdrawal that broadens the common medicalised approach through pre- and post-withdrawal stages of care and support from a multidisciplinary team including lived experience practitioners. The service reduces levels of substance use while also improving overall quality of life, demonstrating the need for more withdrawal services to consider the inclusion of holistic approaches to substance dependence support. [ABSTRACT FROM AUTHOR]

Integration of e-Health technologies for purposes of both assessment and intervention has recently become an interest area in pediatric psychology. The purpose of this study is to present psychometric characteristics of a technology-based (i.e., tablet administration) approach for measuring quality of life (QOL) in children. Eighty children (8-12 years) completed the Quality of Life Systemic Inventory for Children (QLSI-C) twice over a 2-week delay, in a crossover design that used paper and tablet-based modes of administration. Equivalence of scores across methods was examined using intraclass correlation coefficients (ICC), augmented by paired t test and Pearson's correlations. Test-retest reliability was assessed using paired t test and Pearson's correlations while internal consistency was assessed using Cronbach's coefficient. Results showed a good concordance across methods of administration (ICCs = .72 to .91; r = .56 to .83). Paired t test showed no significant differences between the tablet and paper version of the QLSI-C. Internal consistency reliability yielded acceptable Cronbach's alphas for all QLSI-C scores, with all α > .70. Test-retest reliability for the tablet-administered QLSI-C was good (r = .66 to .90). Paired t test showed no significant difference between Time 1 and 2 for the QLSI-C scores, except for the state score. Findings established the reliability of the tablet-administered QLSI-C scores. This technology approach to assessment is more attractive for children, decreases time for administration, and enhances the ease of scoring. These advantages might encourage both clinicians and researchers to consider using e-Health developments in assessment in pediatric psychology. (PsycINFO Database Record [ABSTRACT FROM AUTHOR]

Purpose: To validate electronic versions of the Mini Pediatric and Pediatric Asthma Caregiver's Quality of Life Questionnaires (MiniPAQLQ and PACQLQ, respectively), determine completion times and correlate QOL of children and caregivers.Methods: A total of 63 children and 64 caregivers completed the paper and electronic MiniPAQLQ or PACQLQ. Agreement between versions of each questionnaire was summarized by intraclass correlation coefficients (ICC). The correlation between MiniPAQLQ and PACQLQ scores from child-caregiver pairs was assessed using Pearson's correlation coefficient.Results: There was no significant difference (mean difference = 0.1, 95% CI -0.1, 0.2) in MiniPAQLQ Overall Scores between paper (5.9 ± 1.0, mean ± SD) and electronic (5.8 ± 1.0) versions, or any of the domains. ICCs ranged from 0.89 (Overall) to 0.86 (Emotional Function). Overall PACQLQ scores for both versions were comparable (5.9 ± 0.9 and 5.8 ± 1.0; mean difference = 0.0; 95% CI -0.1, 0.2). ICCs ranged from 0.81 (Activity Limitation) to 0.88 (Emotional Function). The electronic PACQLQ took 26 s longer (95% CI 11, 41; p < 0.001). Few participants (3-11%) preferred the paper format. MiniPAQLQ and PACQLQ scores were significantly correlated (all p < 0.05) for Overall (r paper = 0.33, r electronic = 0.27) and Emotional Function domains (r paper = 0.34, r electronic = 0.29).Conclusions: These electronic QOL questionnaires are valid, and asthma-related QOL of children and caregivers is related. [ABSTRACT FROM AUTHOR]

Objective: To explore feasibility of using child/young person patient-reported outcome measures (PROMs) routinely in practice, using vision-specific instruments and paediatric ophthalmology as the exemplar.Methods: Participants comprised patients aged 8-17 years, with visual impairment or low vision (visual acuity of the logarithm of the minimum angle of resolution (logMAR) worse than 0.3 in the better eye), attending the Department of Ophthalmology at Great Ormond Street Hospital, London, UK. All participants completed age-appropriate PROMs before attending their outpatient appointment. Half were randomly assigned to completion at home, with the choice of paper-and-pencil or electronic format. The other half were invited to complete PROMs during their hospital appointment, and randomly assigned to completion format. All participants completed a face-to-face survey exploring their attitudes and preferences. Analysis comprised survival analysis, and direct comparisons of proportions, with complementary qualitative data analysis.Results: 93 patients participated. 48 (98%) completing PROMs at home chose the paper-and-pencil format. Completion at home took longer than at hospital (median=20, vs 14 min, p<0.001). Visual acuity was associated with completion time (p=0.007) and missing data (p=0.03). Overall, 52 (60%) reported a preference for completion at home but there was no clear preference for format (37 (43%) preferred either format).Conclusion: PROM completion at home ahead of hospital appointments may be preferable for collecting complete, high-quality datasets. Despite equipoise on preference for format, the majority of those completing at home chose the traditional paper-and-pencil format, despite impaired sight. These findings should inform implementation of child/young person PROMs into routine practice. [ABSTRACT FROM AUTHOR]

Objective: Infertility influences various emotional, psychological, social, and relational aspects of women's lives. By employing a systematic review on the papers published in this field, this study aimed to identify the consequences of infertility on psychological and social health of women in Iran. Method: This was a descriptive study, conducted through a systematic review according to the directions denoted by the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) in 2018. To investigate the entirety of the published studies on the sociopsychological consequences of women's infertility in Iran, various databases, including Comprehensive Human Science Portal, Scientific Information Databases (SID), Magiran, National Library and Archives of I. R. IRAN, Noormags, MEDLIB, Science Direct, Google Scholar, Medline, and ProQuest, were explored for the studies published between 1991 and 2018. The selected papers were evaluated according to the content analysis method. Results: Out of the 53 papers investigated, 27 were published in domestic journals (51%), while the remaining 26 papers were published in international journals and were in English (49%). The results revealed that sociopsychological consequences of women's infertility are categorized in 6 main categories: (1) quality of life, (2) depression, (3) anxiety, (4) social support, (5) violence, and (6) sexual function. Conclusion: The results of this study can be used to design psychocognitive interventions and assist women in decreasing the emerging psychological pain and pressure. [ABSTRACT FROM AUTHOR]

Background: Interest in collecting Patient Reported Outcomes using electronic methods such as mobile phones has increased in recent years. However there is debate about the level of measurement equivalence between the traditional paper and newer electronic modes. Information about the acceptability of the electronic versions to respondents is also required. The aim of this study is to compare the equivalence of delivering a widely used generic measure of health status (EQ-5D-5L) across two administration modes (paper and mobile phone).Methods: Respondents from a research cohort of people in South Yorkshire were identified, and randomly allocated to one of two administration modes (paper vs. mobile phone) based on stratifications for age and gender (and across a range of self-reported health conditions). A parallel group design was used where each respondent only completed EQ-5D-5L using one of the modes. In total, 70 respondents completed the measure in the mobile phone arm, and 66 completed the standard paper version. Follow up usability questions were also included to assess the acceptability of the mobile version of EQ-5D-5L. Measurement equivalence was compared at the dimension, utility score and visual analogue scale level using chi square analysis and ANOVA, and by comparing mean differences to an estimated minimally important difference value.Results: Response rates were higher in the mobile arm. The mean EQ-5D-5L utility and VAS scores, and the frequency of respondents endorsing individual EQ-5D-5L dimension response levels did not significantly differ across the administration modes. The majority of the mobile arm agreed that the mobile version of EQ-5D-5L was easy to complete, and that the phone was easy to use, and that they would complete mobile health measures again.Conclusions: Completing health status measures such as EQ-5D using mobile phones produces equivalent results to more traditional methods, but with added benefits (for example lessening the burden of data entry). Respondents are positive towards completing questionnaires using these methods. The results provide evidence that electronic measures are valid for use to collect data in a range of settings including clinical trials, routine care, and in health diary settings. [ABSTRACT FROM AUTHOR]

Quality-of-life measurement in depression is advocated as a patient-centred indicator of recovery, but may instead enhance the mimetic authority of randomised controlled trials (RCTs) which have been roundly critiqued in mental health. In this paper we draw on the social life of methods approach to extend the well-developed critique of RCTs into the field of quality-of-life measurement. We accomplish this through consideration and critique of the conceptual and epistemological development of quality-of-life measurement in depression, including the role of psychometrics in its development. Examining conceptual developments from the 1970s onwards, we consider how the scientific literature on quality-of-life in depression aligns with behavioural economics and consumerism but falls short of engaging with genuinely patient-centred approaches to recovery. We argue that quality-of-life measures in depression were developed within a consumerist model of healthcare in which the medical model was a central pillar and 'choice' a rhetorical device only. While quality-of-life instrument development was largely funded by industry, psychometrics provided no coherent solution to the 'affective fallacy' (high correlations between quality-of-life and depressive symptoms). Industry has largely abandoned the measures, while psychotherapy research has increasingly endorsed them. We argue that in their design and implementation, quality-of-life measures for depression remain based on a commercial model of healthcare, are conceptually flawed and do not support concepts of patient-centred healthcare. [ABSTRACT FROM AUTHOR]

Purpose: In a randomised controlled trial, patients were offered financial incentives to improve their adherence to anti-psychotic maintenance medication. Compared to a control group without the incentives, they had an improved adherence and also better subjective quality of life (SQOL) after 1 year. This paper explores the question as to whether this improvement in SQOL was associated with the amount of money received or with the improved adherence itself.Method: A secondary analysis was performed using data of the experimental group in the trial. Adherence was assessed as the percentage of all prescribed long-acting anti-psychotic injections that were taken by the patient. In regression models, we tested whether changes in medication adherence and/or the amount of incentives received over the 12-month period was associated with SQOL, as rated on the DIALOG scale.Results: Adherence changed from 68.49 % at baseline to 88.23 % (mean difference in adherence = 19.59 %, SD = 17.52 %). The total amount of incentives received within the 1-year study period varied between £75 and £735, depending on the treatment cycle and the number of long-acting injections taken. Improvement in adherence was found to be a significant predictor of better subjective quality of life (β = 0.014, 95 % CI 0.003-0.025, p = 0.014), whilst the amount of incentives received was not (β = 0.0002, 95 % CI -0.002 to 0.002, p = 0.818).Conclusion: Improved medication adherence is associated with a more favourable SQOL. This underlines the clinical relevance of improved adherence in response to financial incentives in this patient group. [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]

It is important to identify valid and acceptable outcome measures so that interventions evaluating common mental health problems can be assessed appropriately. Some advocate the use of generic preference-based measures claimed to be applicable for all health interventions, but others argue that they are insensitive for common mental health problems. The aim of this paper is to evaluate the Clinical Outcomes in Routine Evaluation-Outcome Measure (CORE-OM), to be used in cost-effectiveness studies in people with common mental health problems. The CORE-OM measure was tested for completeness, acceptability and responsiveness in a pilot study. Analyses for missing data, distribution of scores, and standardised response means (SRMs) were calculated. Missing data did not exceed 5% for any of the CORE-6D items both at baseline and follow-up. The overall comprehension rate was high, and only 19 participants (14%) requested clarifications to complete the questionnaire. As expected in a feasibility study, there was a small and non-significant SRM. CORE-OM is a valid and acceptable instrument to evaluate quality of life for people with common mental health problems. More research is needed with larger sample sizes to compare CORE-6D with other condition specific quality of life instruments. [ABSTRACT FROM AUTHOR]

Experiencing homelessness is associated with poor health, high levels of chronic disease and high premature mortality. Experiencing homelessness is known to be socially stigmatised and stigma has been suggested as a cause of health inequalities. No previous review has synthesised the evidence about stigma related to homelessness and the impact on the health of people experiencing homelessness. The present mixed‐methods review systematically searched four databases and retrieved 21 original articles with relevant data around stigma, homelessness and health. Across all studies, there was broad agreement that some people experiencing homelessness experience significant stigma from providers when accessing health care and this impacts on general health and service access. There is also evidence that perceived stigma related to homelessness correlates with poorer mental and physical health. [ABSTRACT FROM AUTHOR]

This study aimed to explore the perspectives of working-aged adults with post-stroke aphasia (PWA) towards what has or would help them in living well with aphasia (LWA). This paper reports the findings in relation to stroke care and its relevance for LWA. This qualitative study was designed with input from a Public and Patient Involvement advisory group. We conducted in-depth, semi-structured interviews with 14 PWA. Data were analysed following principles of reflexive thematic analysis. Support services and LWA spanned five themes: Inpatient care; Support in the community; Speech therapy; Mental health; and Aphasia education and training. Per the findings, all aspects of stroke care were affected and challenged by aphasia. Access to services and information was variable. PWA of working-age, their families and children need access to person-centred stroke care and information responsive to their changing needs at all stages of recovery. Healthcare workers must be equipped with aphasia competency. The results highlight a need for equitable, transparent, responsive access to services, information and stroke liaison support. The findings extend knowledge of the importance of stroke care for supporting working-aged adults and their families to live well in the context of aphasia. There is a need for equitable, transparent access to a responsive integrated pathway of stroke care to support living well with aphasia. People with aphasia post-stroke and their families need access to person-centred stroke care and information responsive to their changing needs at all stages of recovery. This includes flexible access to mental healthcare and speech and language therapy. In order to access relevant care, people with post-stroke aphasia need access to information and stroke liaison support. Training to improve aphasia competency is imperative for healthcare workers. [ABSTRACT FROM AUTHOR]

Purpose: This study was conducted to analyze Korean research papers in which Interpersonal Caring Theory was applied and suggest future directions for effective application and development. Methods: Data collection was done through electronic databases RISS, KISS, DBpia, NDSL and SCHOLAR. Twenty papers were analyzed according to general characteristics, interventions, variables and findings. Results: The number of published papers per publication year was 5 in the 2000s and 15 in the 2010s. The type of research design was for case studies, 1, for survey studies, 8 and for quasi experimental studies, 11. Participants in the studies included students, nurses, patients, office workers, volunteers and widows. Interventions used included drama therapy, Enneagram based interpersonal caring, horticulture, hospice, multimedia, music and rehabilitation. Variables that were related to Interpersonal Caring work included anxiety, college life adjustment, emotional intelligence, grief, happiness heart rate variability, hope, interpersonal caring behaviors, interpersonal relations, job stress, knowledge on self illness, loneliness, mental health, quality of life, self-esteem, serum cortisol, social behavior and stress coping. Emotional intelligence, interpersonal relations, job stress, loneliness and self-esteem were among the variables that did not work. Conclusion: The results show that Interpersonal Caring Theory can be a micro-range theory of nursing care that can be applied with clients in many fields by converging with various activities. [ABSTRACT FROM AUTHOR]

Based on the rich extant research in the field of mental health in acculturation, it is calling to identify religion as one of the meditative variables of the relationship between acculturation and mental health. In addition, little knowledge exists about the detailed religious experience of Chinese migrants in Ireland. This research adopted classic grounded theory to guide data collection and analysis. The findings show that Christian faith plays a significant role as a mediator in the cross-cultural adaptation of the participants with two aspects of the mental impacts: helping to cope with mental stress and providing spiritual satisfaction. The results in this paper are part of the findings from an investigation of the religious experience of the participants during their cross-cultural adaptation in Ireland. [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]

The current study examined the importance of personal goals to residents; assessed whether goal-related behavior was associated with mental health factors (i.e., depression, experiential avoidance, and quality of life); and explored residents' use of selection, optimization, and compensation (SOC) strategies. Interviews were conducted with eight residents at a nursing home along with paper-and-pencil measures of mental health factors. Transcripts were coded first for goal content and subsequently analyzed using an exploratory qualitative method. Most residents (five of eight) denied having goals. Experiential avoidance and depression were significantly negatively correlated with goal content; quality of life was significantly positively correlated with goal content. Eleven themes derived from exploratory analysis suggest SOC processes were important in residents' lives. The study demonstrated the relevance of SOC for residents' quality of life. The potential for developing person-centered interventions to evoke implicit goals and facilitate attainment is discussed. [Research in Gerontological Nursing, 14(6), 277–284.] [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this paper is to evaluate the benefits of an inclusive community singing group towards well-being. Design/methodology/approach: This study used an exploratory qualitative study (EQS) approach. Semi-structured questions were devised and used to elicit participants' experiences on the impact of an inclusive community singing group towards well-being. A thematic approach underpinned by the four phases of The Silences Framework was used to analyse the data. Findings: This study found the following benefits of an inclusive community singing group towards well-being Connecting with others, Physical improvement, Learning new skills, Giving to others and Mindfulness. Originality/value: This study concluded that inclusive community singing plays a pivotal role in enhancing the health and well-being of communities. [ABSTRACT FROM AUTHOR]

Background: The ICECAP measures potentially offer a broader assessment of quality of life and well-being, in comparison to measures routinely used in economic evaluation, such as the EQ-5D-3 L. This broader assessment may allow measurement of the full effects of an intervention or treatment. Previous research has indicated that the ICECAP-O (for older people) and EQ-5D-3 L measure provide complementary information. This paper aims to determine similar information for the ICECAP-A (for the entire adult population) in terms of whether the measure is a substitute or complement to the EQ-5D-3 L.Methods: Data from the BEEP trial - a multi-centre, pragmatic, randomised controlled trial - were used. Spearman rank correlations and exploratory factor analytic methods were used to assess whether ICECAP-A and EQ-5D-3 L are measuring the same, or different, constructs.Results: A correlation of 0.49 (p < 0.01) was found between the ICECAP-A tariff score and the EQ-5D-3 L index. Using the pooled items of the EQ-5D-3 L and the ICECAP-A a two factor solution was optimal, with the majority of EQ-5D-3 L items loading onto one factor and the majority of ICECAP-A items onto another.Conclusion: The results presented in this paper indicate that ICECAP-A and EQ-5D-3 L are measuring two different constructs and provide largely different, complementary information. Results showed a similarity to results presented by Davis et al. using the ICECAP-O.Trial Registration: ISRCTN 93634563. [ABSTRACT FROM AUTHOR]

Rationale: Several new drugs for idiopathic pulmonary fibrosis (IPF) are in development. Tools are needed to assess whether these drugs benefit patients on outcomes that matter most to them. Health-related quality of life (HRQL) is one such outcome. It is influenced by many factors, but symptoms and their impacts are two strong drivers.Objectives: To develop a questionnaire to assess symptoms, disease impacts, and HRQL specifically for patients with IPF.Methods: Working with the U.S. Food and Drug Administration through the Drug Development Tool Qualification process, focus groups, concept elicitation, and cognitive debriefing interviews were conducted to inform the development of a 44-item pilot questionnaire. The pilot paper-and-pen questionnaire was migrated to an equivalent electronic version and field-tested in a 14-day study. Response data were subjected to psychometric testing, including exploratory factor analysis, item calibration using item response theory models, test-retest reliability, and validity testing.Measurements and Main Results: A total of 125 patients with IPF (62.4% men) completed the longitudinal study. The mean ± SD age of the cohort was 69 ± 7.60 years, and the mean FVC% predicted was 71 ± 20.0. After factor and item analyses, 35 items were retained, and these comprise the two modules (symptoms and impacts) of the Living with IPF (L-IPF) questionnaire. The L-IPF yields five scales demonstrating good psychometric properties, including correlation with concurrently collected FVC% predicted and the ability to discriminate between patients with differing levels of IPF severity.Conclusions: The L-IPF is a new questionnaire that assesses symptoms, disease impacts, and HRQL in patients with IPF. [ABSTRACT FROM AUTHOR]

Background: Mental disorders are largely socially determined, yet the combined impact of multidimensional social factors on the two most common mental disorders, depression and anxiety, remains unclear. Methods: We constructed a polysocial risk score (PsRS), a multidimensional social risk indicator including components from three domains: socioeconomic status, neighborhood and living environment and psychosocial factors. Supported by the UK Biobank cohort, we randomly divided 110 332 participants into the discovery cohort (60%; n = 66 200) and the replication cohort (40%; n = 44 134). We tested the associations between 13 single social factors with Patient Health Questionnaire (PHQ) score, Generalized Anxiety Disorder Scale (GAD) score and self-reported depression and anxiety. The significant social factors were used to calculate PsRS for each mental disorder by considering weights from the multivariable linear model. Generalized linear models were applied to explore the association between PsRS and depression and anxiety. Genome-wide environmental interaction study (GWEIS) was further performed to test the effect of interactions between PsRS and SNPs on the risk of mental phenotypes. Results: In the discovery cohort, PsRS was positively associated with PHQ score (β = 0.37; 95% CI = 0.35-0.38), GAD score (β = 0.27; 95% CI = 0.25-0.28), risk of self-reported depression (OR = 1.29; 95% CI = 1.28-1.31) and anxiety (OR = 1.19; 95% CI = 1.19-1.23). Similar results were observed in the replication cohort. Emotional stress, lack of social support and low household income were significantly associated with the development of depression and anxiety. GWEIS identified multiple candidate loci for PHQ score, such as rs149137169 (ST18) (Pdiscovery = 1.08 × 10-8, Preplication = 3.25 × 10-6) and rs3759812 (MYO9A) (Pdiscovery = 3.87 × 10-9, Preplication = 6.21 × 10-5). Additionally, seven loci were detected for GAD score, such as rs114006170 (TMPRSS11D) (Pdiscovery = 1.14 × 10-9, Preplication = 7.36 × 10-5) and rs77927903 (PIP4K2A) (Pdiscovery = 2.40 × 10-9, Preplication = 0.002). Conclusions: Our findings reveal the positive effects of multidimensional social factors on the risk of depression and anxiety. It is important to address key social disadvantage in mental health promotion and treatment. [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]

Mental health is one of the most pervasive health concerns in the refugee population due to the combined effects of traumatic experiences prior to migration and post-migration stressors related to resettlement. The objectives of this systematic search were to synthesize evidence on the effectiveness and identify gaps of mental health interventions on mental health outcomes for refugees resettled in the United States. This review search identified a combination of quasi-experimental (7 studies) and qualitative research studies (5 studies). Twelve papers, published between 2003-2017, evaluating twelve different interventions, were selected for review. Studies were conducted in a variety of refugee populations: Africans (8), Southeast Asians (2), Bhutanese (1), and multicultural (1). Interventions included groups/workshops (10) and individual counseling (2). The results from the mental health interventions showed increases in health confidence, health seeking behaviors, consistency with treatment course, English proficiency, quality of life, and level of enculturation. Results also showed decreases in depression and psychological distress. Also identified from this review were different methods for interventions including linguistic and ethnically-matched facilitators versus non-matched facilitators, as well as group interventions versus non-group interventions. These differences were identified in the review and discovered to be areas for further research as these items were not often addressed in the literature. [ABSTRACT FROM AUTHOR]

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Purpose: Attention on world migration has mostly focused on economic and inter-personal impacts, leaving a large gap in our understanding of how migration can affect migrants' health. The purpose of this paper is to illustrate how the interdependent experiences of skilled migrants, as they undertake the latter part of their journey of skilled migration and resettle into their adopted homeland, can be conceptualised as a structural determinant of health. Design/methodology/approach: In this qualitative study, semi-structured interviews collected data on skilled migrants' experiences, including health impacts, related to their migration to Tasmania, Australia. A social determinants of health (SDOH) framework and Bourdieu's theory of practice were applied to interpret the findings. Findings: In total, 16 skilled migrants, from several nations and occupations, provided wide-ranging accounts of social inclusion and exclusion, and frequently reported experiencing psychological stress. There were also some reports of improved mental health. The migration process shapes life's chances and choices. Many migrants reported access to important social, economic and cultural resources, however, good health was also impeded by equally significant systemic barriers. Research limitations/implications: The sample is small and confined to a geographically isolated location, and did not include all types of skilled migrants. Practical implications: Countries resettling skilled migrants should modify systems to promote rather than inhibit wellbeing, e.g. government and industry partnerships to facilitate employability and enhance access to supportive information about the migration process. Originality/value: This is the first known study to link Bourdieu's theory to SDOH relevant to skilled migrants. This approach helped reveal the prominence of structural factors beyond the control of migrants but potentially modifiable by the host country. This study illustrates the importance of examining both positive and negative health outcomes associated with migration, and how these factors relate to theory and policy. [ABSTRACT FROM AUTHOR]

Simple Summary: Adolescents and young adults (AYAs) experiencing cancer have support needs that differ from older adult cancer patients. The aim of our qualitative study was to determine the holistic needs of AYA cancer survivors and to develop a patient-centered conceptual model of AYA survivorship care. Analysis of our interview results reveals eight key domains critical to holistic patient-centered AYA survivorship care. We offer a conceptual model that differs from current conceptual models of AYA survivorship care by centering the patient and their support systems, emphasizing the need for continuing supportive navigation, and the importance of repeated support along the identified domains over time. Purpose: Conceptual models provide frameworks to illustrate relationships among patient-, provider-, system-, and community-level factors that inform care delivery and research. Existing models of cancer survivorship care focus largely on pediatric or adult populations whose needs differ from adolescents and young adults (AYAs). We developed a patient-centered conceptual model of AYA survivorship care. Methods: We conducted a narrative literature review of current conceptual and theoretical models of care. We engaged AYA cancer survivors (n = 25) in semi-structured one-hour telephone interviews. Most participants were in their 20s and 30s, and the majority (84%) were women. Recruitment was stratified by age and time since cancer diagnosis. We conducted a thematic analysis of interview transcripts to identify themes that exemplified patient-centered care. Results: Most participants identified as white and female. Leukemia and breast cancer were the most common cancer types. Main themes included the need for (1) care coordination, (2) ongoing mental health support, (3) connection to AYA peer support, (4) support during fertility preservation efforts, (5) support with financial burden, (6) support for quality of life, (7) information about and support with side effects and late effects, and (8) attention to the unique needs of young adults. Conclusions: We present a patient-centered conceptual model of AYA survivorship care needs that can inform future cancer care delivery and research. [ABSTRACT FROM AUTHOR]

The development of transdiagnostic cognitive-behavioural therapy (T-CBT) is a promising avenue for the treatment of anxiety disorders. This study aimed at evaluating the feasibility and effectiveness of a group T-CBT, developed by practising clinicians, for patients with principal and comorbid anxiety disorders in a pragmatic quasi-experimental trial. Clinician-rated and self-rated measures were used to assess principal (anxiety) and secondary (depression, daily functioning, quality of life) outcomes. Forty-two participants from an anxiety outpatient clinic of a mental health hospital with at least one primary anxiety disorder took part in the study. The intervention consisted of 8 to 10 weekly group T-CBT sessions of 120 minutes. Among the 42 participants recruited, 37 completed baseline measures. Attrition was high (35%) as only 24 participants completed the treatment as intended. Significant improvements were observed on anxiety, depression, and daily functioning as well as physical and psychological quality of life measures. Gains were maintained up to three months after the end of treatment. Findings support the effectiveness of a group T-CBT for anxiety disorders in an outpatient clinic. However, feasibility was only partially supported highlighting the need for further research on the transportability of group T-CBT in to clinical practice. What is already known about this topic: (1) Transdiagnostic group CBT is an effective treatment for anxiety disorders. (2) Few studies have examined the effectiveness of transdiagnostic group CBT in naturalistic settings. (3) Few studies have examined the effectiveness of treatments as implemented by clinicians in routine clinical practice. What this paper adds: (1) Eight to ten sessions of transdiagnostic group CBT developed by practising clinicians seemed sufficient in improving anxiety and depressive symptoms, daily functioning, and quality of life in patients from an outpatient anxiety disorders clinic in a hospital setting. (2) Patients that completed treatment reported significantly more impairment in daily functioning before treatment than participants who dropped out. (3) High attrition rates suggest that organisational factors need to be considered while implementing evidence-based treatments into routine clinical practice. [ABSTRACT FROM AUTHOR]

Purpose: The aim of this paper is to describe a model of palliative rehabilitation for newly diagnosed advanced cancer patients and present data on how it was utilised during a randomised controlled trial (RCT).Methods: We designed a highly flexible, multidisciplinary model of palliative rehabilitation consisting of a "basic offer" and tailored elements. The model was evaluated in the setting on an RCT investigating the effect of systematic referral to a palliative rehabilitation clinic concurrently with standard oncology treatment or standard treatment alone. The basic offer of palliative rehabilitation was two consultations and a 12-week possibility of contacting a palliative rehabilitation team, if needed. In addition, patients and family caregivers could be offered participation in a 12-week patient/caregiver school combined with individually tailored physical exercise in groups, individual consultations, or both. Contacts with the palliative rehabilitation team and participant evaluation were registered prospectively.Results: Between December 2014 and December 2017, 132 adults with newly diagnosed advanced cancer were seen in the palliative rehabilitation outpatient clinic. Twenty percent of the participants received the basic offer only (n = 26), 45% additionally participated in the group program (n = 59), and 35% received supplementary individual consultations without participating in the group program (n = 47). The intervention was primarily led by nurses, and the main themes of the individual consultations were coping, pain, and nutrition. When asked if they would recommend the intervention to others in the same situation, 93% of the respondents agreed, 7% partly agreed, and no one disagreed.Conclusion: The new model of palliative rehabilitation presented here had a flexibility to meet the needs of the participants and led to a very high degree of patient satisfaction. It could serve as an inspiration to other cancer centres wanting to integrate palliative care into standard oncology services. [ABSTRACT FROM AUTHOR]

The concepts Vivir Bien and Buen Vivir, often translated as 'living well' or 'collective well-being,' are central to contemporary social medicine reforms in Latin America. Owing to increasing social inequalities, notably in the public healthcare sector, Vivir Bien has regional significance as it redefines the neoliberal development goals from economic improvement to so-called post-neoliberal social goals of harmonious co-existence between society and the physical environment. To examine how this abstract concept is conceptualised, is incorporated into, and shapes state-sponsored public health strategies, I analyze the 'Vivir Limpio, Vivir Sano, Vivir Bonito, Vivir Bien ... !' ('Live Clean, Live Healthy, Live Beautiful, Live Well ... !') national campaign in Nicaragua that began in 2013. The campaign promotes normative socio-political ideals around environmental health citizenship, including the adoption of indigenous grammars and solidarity. However, analyses of dozens of interviews and 143 household surveys in four historically impoverished, untidy, and unhygienic communities suggest that the campaign's discourses do not resonate with citizens or their socio-economic contexts. In highlighting discrepancies between state-sponsored normative sociopolitical ideals and citizens' lived realities and perspectives, this paper introduces the term 'post-neoliberal citizenship' to reflect contemporary – and changing – conceptualizations of health, wellbeing, and citizenship in post-neoliberal Latin America. [ABSTRACT FROM AUTHOR]

The increasing number of immigrants entering the United States suggests the need for more scholarly work aimed at identifying and addressing the healthcare needs of this population. This paper examines the physical, spiritual, environmental, intellectual, social, vocational and emotional health domains of a sample of adult immigrants in the mid-west US. The paper also looks at their reported home remedies from their countries. Both qualitative and basic quantitative tools were utilized to examine participants' subjective health status in the eight-dimensions of health and the kinds of home remedies they reported that they brought to the US. A thematic analysis was used to examine the qualitative data and basic descriptive statistics such as frequencies and percentages were computed. Overall, the majority of the immigrants in this study reported significant positive improvements in their overall health except for environmental health since moving to the US. We also learned from participants that they brought food and drink remedies, traditional medications, herbal medicine, over the counter medicine from home, homeopathy, Shi a tsu (massage), exercise (martial arts) to the US to treat their illnesses. Future research should better define and address these environmental health concerns and their impact on the overall health of the immigrants. [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]

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OBJECTIVES: In the United States, autistic individuals experience disproportionate physical and mental health challenges relative to non-autistic individuals, including higher rates of co-occurring and chronic conditions and lower physical, social, and psychological health-related quality of life. The Autism Intervention Research Network on Physical Health (AIR-P) is an interdisciplinary, multicenter research network for scientific collaboration and infrastructure that aims to increase the life expectancy and quality of life for autistic individuals, with a focus on underserved or vulnerable populations. The current paper describes the development of the AIR-P Research Agenda. METHODS: Development of the research agenda involved an iterative and collaborative process between the AIR-P Advisory Board, Steering Committee, and Autistic Researcher Review Board. The methodology consisted of 3 phases: (1) ideation and design, (2) literature review and synthesis; and (3) network engagement. RESULTS: Six core research priorities related to the health of autistic individuals were identified: (1) primary care services and quality, (2) community-based lifestyle interventions, (3) health systems and services, (4) gender, sexuality, and reproductive health, (5) neurology, and (6) genetics. Specific topics within each of these priorities were identified. Four cross-cutting research priorities were also identified: (1) neurodiversity-oriented care, (2) facilitating developmental transitions, (3) methodologically rigorous intervention studies, and (4) addressing health disparities. CONCLUSIONS: The AIR-P Research Agenda represents an important step forward for enacting large-scale health-promotion efforts for autistic individuals across the lifespan. This agenda will catalyze autism research in historically underrepresented topic areas while adopting a neurodiversity-oriented approach to health-promotion. [ABSTRACT FROM AUTHOR]

Purpose – Adults with intellectual disabilities are the most psychotropically medicated population of all. Non-medically trained care staff with whom these individuals spend the majority of their time are generally poorly trained in issues surrounding psychotropic medication. Much of the research related to the experiences of staff working in intellectual disability services has focused on medically trained professionals, and clients, and has been of a quantitative nature. Very little attention has been paid to care staff, their experiences, and through a qualitative approach. The purpose of this paper is to address this issue. Design/methodology/approach – The current study employed a semi-structured interview methodology to explore the experiences of, and impact on, care staff in relation to psychotropic medication usage in adults with intellectual disabilities living in long-term residential care. Eight full-time, experienced care staff were interviewed and data were analysed using interpretative phenomenological analysis (Smith et al., 2009). Findings – The paper demonstrates an array of concerns for staff, such as the negative impact upon client quality-of-life, the ethical implications of the medications' regime, and the relationship perceived by care staff with the organisation management; and a significant lack of training. The limited field of previous research demographically comparable to the present paper was analysed for findings. Originality/value – The paper helps expand the current literature on experiences of care staff for people with intellectual disabilities from their own perspective, explores the emotional impact of the organisation's treatment of clients, and offers a range of recommendations in terms of theory, clinical practice and research. [ABSTRACT FROM AUTHOR]

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Purpose: The PROMIS-29 v2.0 profile assesses pain intensity using a single 0-10 numeric rating item and seven health domains (physical function, fatigue, pain interference, depressive symptoms, anxiety, ability to participate in social roles and activities, and sleep disturbance) using four items per domain. This paper describes the development of physical and mental health summary scores for the PROMIS-29 v2.0.Method: We conducted factor analyses of PROMIS-29 scales on data collected from two internet panels (n = 3000 and 2000).Results: Confirmatory factor analyses provided support for a physical health factor defined by physical function, pain (interference and intensity), and ability to participate in social roles and activities, and a mental health factor defined primarily by emotional distress (anxiety and depressive symptoms). Reliabilities for these two summary scores were 0.98 (physical health) and 0.97 (mental health). Correlations of the PROMIS-29 v2.0 physical and mental health summary scores with chronic conditions and other health-related quality of life measures were consistent with a priori hypotheses.Conclusions: This study develops and provides preliminary evidence supporting the reliability and validity of PROMIS-29 v2.0 physical and mental health summary scores that can be used in future studies to assess impacts of health care interventions and track changes in health over time. Further evaluation of these and alternative summary measures is recommended. [ABSTRACT FROM AUTHOR]

Background: No current guidance is available in the UK on the choice of preference-based measure (PBM) that should be used in obtaining health-related quality of life from children. The aim of this study is to review the current usage of PBMs for obtaining health state utility values in child and adolescent populations, and to obtain information on patient and parent-proxy respondent preferences in completing PBMs in the UK.Methods: A literature review was conducted to determine which instrument is most frequently used for child-based economic evaluations and whether child or proxy responses are used. Instruments were compared on dimensions, severity levels, elicitation and valuation methods, availability of value sets and validation studies, and the range of utility values generated. Additionally, a series of focus groups of parents and young people (11-20 years) were convened to determine patient and proxy preferences.Results: Five PBMs suitable for child populations were identified, although only the Health Utilities Index 2 (HUI2) and Child Heath Utility 9D (CHU-9D) have UK value sets. 45 papers used PBMs in this population, but many used non-child-specific PBMs. Most respondents were parent proxies, even in adolescent populations. Reported missing data ranged from 0.5 to 49.3%. The focus groups reported their experiences with the EQ-5D-Y and CHU-9D. Both the young persons' group and parent/proxy groups felt that the CHU-9D was more comprehensive but may be harder for a proxy to complete. Some younger children had difficulty understanding the CHU-9D questions, but the young persons' group nonetheless preferred responding directly.Conclusion: The use of PBMs in child populations is increasing, but many studies use PBMs that do not have appropriate value sets. Parent proxies are the most common respondents, but the focus group responses suggest it would be preferred, and may be more informative, for older children to self-report or for child-parent dyads to respond. [ABSTRACT FROM AUTHOR]

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Spirituality as a dimension of quality of life and well-being has recently begun to be more valued within person-centred treatment approaches to mental health in the UK. The aim of this paper is to provide indicators of the extent to which accessing a spiritual support group may be useful within mental health recovery from the view point of those in receipt of it. The study design was a small-scale exploratory study utilising mixed methods. Quantitative methods were used to map the mental health, general well-being and social networks of the group. These were complimented by a semi-structured open-ended interview which allowed for Interpretative Phenomenological Analysis (IPA) of the life-history accounts of nine individuals with mental health problems who attended a 'spirituality support group'. Data from unstructured open-ended interviews with five faith chaplains and a mental health day centre manager were also analysed using thematic analysis. The views of 15 participants are therefore recounted. Participants reported that the group offered them: an alternative to more formal religious organisations, and an opportunity to settle spiritual confusions/fears. The 'group' was also reported to generally help individual's subjective feelings of mental wellness through social support. Whilst the merits of spiritual care are appealing, convincing services to include it within treatment may still be difficult. [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]

Introduction: The COVID-19 crisis exerts a marked impact on the quality of life of individuals experiencing grief. Therefore, the present study aimed to assess the effectiveness of life quality improvement treatment and emotion-focused therapy on the cognitive flexibility and vitality of individuals affected by grief due to COVID-19. Material & Methods: This research employed a quasi-experimental pretest-posttest design with two experimental groups and one control group. In 2021, 30 individuals affected by grief were purposefully selected and randomly assigned to three groups: life quality improvement treatment, emotion-focused therapy, and the control group. Data were collected using the Cognitive Flexibility Questionnaire and the Oxford Happiness Questionnaire. The first experimental group received emotion-focused therapy (Leslie Greenberg, 2012), while the second experimental group received life quality improvement treatment (Fresch, 2006). Data were analyzed in SPSS software (version 27) using analysis of covariance. Results: The results demonstrated that both emotion-focused therapy and therapy based on improving quality of life had a positive effect on behavioral flexibility and social vitality, and the effectiveness of therapy based on improving quality of life on the vitality of bereaved people was more than emotion-focused therapy. Discussion & Conclusion: Considering the effectiveness of both treatments on the flexibility of action and the effectiveness of the treatment to improve the quality of life and vitality of people with grief, psychotherapists can benefit from both two treatments to improve the quality of life and vitality of people with the experience of grief to take. [ABSTRACT FROM AUTHOR]

Aims: To comprehensively examine the prevailing condition of care dependence among middle‐aged individuals who have experienced hemiplegia subsequent to a stroke and were currently undergoing post‐acute rehabilitation. Additionally, the study sought to analyse the determinants that impacted this phenomenon. Design: A single‐centre, cross‐sectional study design. Methods: During the period from January 2020 to October 2022, a cohort of 196 hemiplegic stroke patients, aged between 40 and 65, and within 6 months of their stroke onset, was selected from the cerebrovascular outpatient clinic at a tertiary hospital in Hangzhou. The demographic and disease‐related data, care dependence level, mental state, nutrition and depression status were collected. Furthermore, all collected data were analysed by descriptive and correlative statistical methods. Results: The care dependence level was 51.04 ± 9.42, with an incidence of care dependence of 78.1%. Multivariate regression analysis showed that age, history of falls, physical dysfunction, chronic comorbidities, depression, nutritional status and cognitive dysfunction were influencing factors for care dependence in the participants after a stroke. Conclusion: The incidence of care dependence among hemiplegic patients aged from 40 to 65 years old in the early stage after a stroke was high. Nursing staff should focus on these patients with a history of falling, physical dysfunction, comorbidity, depression status, nutritional status and cognitive dysfunction in clinical practice. Relevance to Clinical Practice: The incidence of care dependence in middle‐aged hemiplegic patients following a stroke is significantly increased. Some risk factors should be assessed, monitored, and controlled by nursing staff as early as possible in order to reduce the dependence levels in post‐acute rehabilitation period and improve the quality of life of hemiplegia patients. Reporting Method: Our study complies with the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) Checklist: cross‐sectional studies (see Table S1). Patient or Public Contribution: No patient or public contribution. [ABSTRACT FROM AUTHOR]

Refugees and asylum seekers bring with them a plurality of cultures, traditions, and values that could prove crucial in influencing perceived health needs, requests for intervention, or willingness to undergo specific health treatments. Although studies have focused on the health consequences of forced migration, in recent years, there has been a lack of information on how refugees and asylum seekers represent their experiences of perceived health needs and elements that influence well-being, in a community context. This study aims to explore the experience of refugees and asylum seekers in an Italian multicultural community about perceived health needs. A qualitative phenomenological study was conducted with an interpretive approach. The data were collected using a semi-structured face-to-face interview. The interviews were transcribed, read thoroughly, and analyzed. Nineteen refugees and asylum seekers were interviewed. Three main themes were extracted: (1) the centrality of the family to feel healthy; (2) feeling part of a community; and (3) stability and security. The results confirm that health needs, experiences, and different cultural representations of health and illness should be read and addressed with a culturally competent vision. This study was not registered. [ABSTRACT FROM AUTHOR]

The purpose of this study is to explore the views of autistic adults on randomised controlled trials, specifically on processes such as randomisation and blinding, to understand the barriers and facilitators for recruiting autistic people to randomised controlled trials involving medications. We conducted one-to-one interviews with 49 autistic adults. Interviews were audio-recorded and analysed thematically. The participants found randomised controlled trial processes acceptable and linked positive attitudes towards randomised controlled trial participation to autistic peoples' heightened sense of fairness and preference for evidence-driven knowledge. However, randomised controlled trial designs may be incompatible with a (1) preference for a controlled predictable world, (2) perceived vulnerability at physical and mental health levels and (3) history of misunderstanding and exclusion, crucially from healthcare professionals. Suggestions that emerged from our findings include efforts to co-produce research to nurture trust and adapting communication practices to improve access to trials. Autistic people are a highly motivated group to work with research teams to mitigate barriers to randomised controlled trial participation. We explored what psychosocial determinants play a role in the acceptability of randomised controlled trials to test interventions to improve quality of life and mental health in autistic adults. The study provides useful information that may help the design and conduct of more accessible trials with and for the autistic community. Large randomised controlled trials are used to test healthcare treatments. Yet there are no large randomised controlled trials on effective treatments for common mental health issues affecting autistic adults. The purpose of this study was to learn what autistic adults think about randomised controlled trials in preparation for a randomised controlled trial testing a medication for anxiety. This means we wanted to know their opinions about the way randomised controlled trials are done, such as how people are chosen to be in the study and how the study is carried out. We did this by talking to 49 autistic adults individually and asking them questions. We found that most of the people we talked to were okay with the way randomised controlled trials are done. They thought it was fair and they liked that it was based on evidence. However, some autistic people might find it hard to take part in randomised controlled trials. Some people did not like the uncertainty of not knowing what treatment they would receive in a randomised controlled trial. Others felt too vulnerable and may have had bad experiences with healthcare in the past. We found that it is important to involve autistic people early on and at every stage when designing a clinical trial. Care about how clear and precise the study communication is will build trust and improve access to research. Our study indicates that it is possible to conduct large randomised controlled trials with and for autistic people. This can ultimately contribute to the improvement of healthcare outcomes for this population. [ABSTRACT FROM AUTHOR]

Financial wellbeing is an important component of people's overall wellbeing, reflecting the capacity to live a comfortable and fulfilling life. Yet virtually nothing is known about this topic for autistic people. This study addressed this gap using a two-phase sequential mixed-methods design. Here, we report on findings from the Phase 2 qualitative study. In this study, 21 autistic participants were purposively selected based on the status of their financial wellbeing, including 12 people with high, and 9 with low, financial wellbeing, and interviewed by an autistic researcher. We identified four themes through reflective thematic analysis. Having access to a stable income made an enormous difference to people's financial wellbeing. Participants emphasised how their broader social supports, especially family support, shaped their financial wellbeing. Yet, planning financially was often challenging, especially for people who had insufficient money to meet their basic needs. Nevertheless, our participants reported a strong drive to stay in control and avoid unnecessary risk. Our findings revealed how much money matters in autistic people's lives. Future research should investigate the ways in which autistic people could secure more reliable incomes and identify the most effective ways to support them to achieve financial resilience. Money matters in people's lives. It helps to meet people's basic needs (food, clothes, shelter) and live the lives they want to. When people talk about 'financial wellbeing', they mean how much you feel in control over day-to-day finances and how much freedom you have to make choices to enjoy life. We don't know what autistic people think about these things. That's why we did our study. We spoke to 21 autistic adults (24–69 years) about how they felt about their financial situation. We deliberately spoke to people who had told us previously they felt 'financially well' or 'financially unwell' so we could hear a range of opinions. Autistic people told us financial wellbeing meant having enough money to pay for their basics needs, to have a safety net for unexpected bills and not having to worry about money now or in the future. But many felt that good financial wellbeing was not possible for them. They often did not have a stable income to cover day-to-day expenses. This limited the choices they could make. Despite these challenges, autistic people told us they worked hard to budget and save money when they could – because feeling financial insecure was just too stressful, especially when they could not rely on family or friends for support. It made them feel mentally unwell. Our study shows there are many factors that influence autistic people's financial wellbeing. We need more research to help us understand how autistic people can be supported to achieve financial security. [ABSTRACT FROM AUTHOR]

Background: Assessing the use and effectiveness of complementary and integrative health (CIH) therapies via survey can be complicated given CIH therapies are used in various locations and formats, the dosing required to have an effect is unclear, the potential health and well-being outcomes are many, and describing CIH therapies can be challenging. Few surveys assessing CIH therapy use and effectiveness exist, and none sufficiently reflect these complexities. Objective: In a large-scale Veterans Health Administration (VA) quality improvement effort, we developed the "Complementary and Integrative Health Therapy Patient Experience Survey", a longitudinal, electronic patient self-administered survey to comprehensively assess CIH therapy use and outcomes. Methods: We obtained guidance from the literature, subject matter experts, and Veteran patients who used CIH therapies in designing the survey. As a validity check, we completed cognitive testing and interviews with those patients. We conducted the survey (March 2021-April 2023), inviting 15,608 Veterans with chronic musculoskeletal pain with a recent CIH appointment or referral identified in VA electronic medical records (EMR) to participate. As a second validity check, we compared VA EMR data and patient self-reports of CIH therapy utilization a month after survey initiation and again at survey conclusion. Results: The 64-item, electronic survey assesses CIH dosing (amount and timing), delivery format and location, provider location, and payor. It also assesses 7 patient-reported outcomes (pain, global mental health, global physical health, depression, quality of life, stress, and meaning/purpose in life), and 3 potential mediators (perceived health competency, healthcare engagement, and self-efficacy for managing diseases). The survey took 17 minutes on average to complete and had a baseline response rate of 45.3%. We found high degrees of concordance between self-reported and EMR data for all therapies except meditation. Conclusions: Validly assessing patient-reported CIH therapy use and outcomes is complex, but possible. [ABSTRACT FROM AUTHOR]

Simple Summary: Developing cancer during adolescence or young adulthood adds extra challenges to an already difficult period of development. This can cause a 'biographical disruption,' in the sense that people miss out on key milestones they might reasonably have expected to achieve during the period, and this can affect their emotional wellbeing. While research shows that young people may experience various degrees of emotional distress, less is known about the emotional experiences and barriers young people experience when accessing help and support. We interviewed two groups of young people who were within 6 months of diagnosis and 3–5 years after treatment. We found three themes that described emotional health experiences: the emotional impact of cancer; personal barriers to support; and support to improve mental health. Differences were identified across the treatment journey, in which we were able to propose therapies and interventions that could be used to help improve psychological outcomes. The biographical disruption that occurs in adolescents and young adults following a cancer diagnosis can affect various important psychosocial domains including relationships with family and friends, sexual development, vocational and educational trajectories, and physical and emotional wellbeing. While there is evidence of the physical impact of cancer during this period, less is known about the impact on emotional wellbeing and especially on the barriers for young people accessing help and support. We aimed to obtain a more in-depth understanding of young people's experiences of their diagnosis, treatment, psychological impact, and range of resources they could or wanted to access for their mental health. We conducted an in-depth qualitative study using semi-structured interviews with 43 young people who had developed cancer aged 16 to 39 years and were either within 6 months of diagnosis or 3–5 years after treatment had ended. Framework analysis identified three themes: the emotional impact of cancer (expressed through anxiety, anger, and fear of recurrence); personal barriers to support through avoidance; and support to improve mental health through mental health services or adolescent and young adult treatment teams. We showed the barriers young people have to access care, particularly participant avoidance of support. Interrupting this process to better support young people and provide them with flexible, adaptable, consistent, long-term psychological support has the potential to improve their quality of life and wellbeing. [ABSTRACT FROM AUTHOR]