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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]

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]

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.)

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.)

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.)

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.)

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]

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]

Introduction and Aims: The Australian Treatment Outcomes Profile (ATOP) is a brief instrument that assesses a range of substance use, health and well-being measures over the past 28 days. Previously, it has been validated in general adult Australian alcohol and other drug (AOD) treatment populations. However, the increasing number of older-aged clients attending AOD treatment warrants the instrument to be validated for this population. The aim of this study was to validate the ATOP for use in older AOD populations, by comparing it with validated 'gold standard' measures used in older populations.Design and Methods: A convenience sample of 99 participants aged ≥50 attending specialist AOD services in Sydney, Australia were administered the ATOP by a researcher, along with alcohol use (AUDIT) and health questionnaires [Physical Health Questionnaire-15, 12-item short-form Health Survey (SF-12) and Geriatric Depression Scale].Results: The ATOP items had strong agreement with the comparison instruments. The highest correlation was between the 28 days alcohol use and the AUDIT. ATOP psychological health scores highly correlated with the SF-12 mental health subscale and the Geriatric Depression Scale, and ATOP physical health scores significantly correlated with the SF-12 physical health subscale and the Physical Health Questionnaire-15. The ATOP Quality of Life score significantly correlated with all health measures. Discussion and Conclusions The ATOP has good concurrent validity with other validated substance use and health measures in an older population. Comparison with general older populations demonstrated the poorer health of this group of older AOD clients in particular.[Lintzeris N, Monds L A, Rivas G, Leung S, Withall A, Draper B. The Australian Treatment Outcomes Profile instrument as a clinical tool for older alcohol and other drug clients: A validation study. Drug Alcohol Rev 2016;35:673-677]. [ABSTRACT FROM AUTHOR]

Aim: To examine associations between patterns of language use and early adolescent well-being.Methods: Participants were 1763 Australian 11- to 12-year-olds in the Child Health CheckPoint. Six patterns of language use were identified from a writing activity using Linguistic Inquiry and Word Count and factor analysis: Acting in the present and future, Positive emotion, Gender and relationships, Self-aware, Inquisitive and time focused, and Confident. Well-being measures represented a spectrum from negatively to positively framed psychosocial health. Associations between language use and well-being were estimated using linear regression adjusted for age, sex and social disadvantage.Results: Positive emotion (high emotional tone, positive emotion) was associated with better general well-being (standardised regression coefficient (SRC) 0.05; 95% confidence interval 0.00 to 0.11; p = 0.04), life satisfaction (0.06; 0.01 to 0.11; p = 0.03), psychosocial health (0.07; 0.02 to 0.12; p = 0.01) and quality of life (QoL) (0.06; 0.01 to 0.11; p = 0.02). Similarly, Self-aware (high first person singular pronouns, authentic, low clout) was associated with better general well-being, life satisfaction and psychosocial health (SRC 0.05, 0.09, 0.08), but Confident (high clout, first person plural pronouns, affiliation) was associated with worse life satisfaction, psychosocial health and QoL (SRC -0.06, -0.09, -0.06).Conclusion: If replicated in 'real-world' settings (e.g., social media), language patterns could provide naturalistic insights into early adolescents' well-being. [ABSTRACT FROM AUTHOR]

Background: There have been inconsistent findings from studies examining factors associated with quality of life (QoL) for children affected by parental illness. Aim: The aim of this study was to explore factors associated with self‐reported QoL in children affected by parental illness or parental substance abuse. Design: A cross‐sectional multicentre study. Methods: The sample included 246 families with children 8–18 years recruited via ill parents who received treatment for severe physical illness, mental illness or substance abuse in specialised health services. We performed multiple linear regression analyses to examine factors associated with the children's self‐reported QoL. Main outcome measure: KIDSCREEN‐27. Results: The children's self‐reported QoL was positively associated with the ill parent's self‐reported physical health, the children's self‐reported social skills, the degree to which other adults took over the ill parent's responsibilities, provision of sibling care, provision of health care for the ill parent and positive outcome of caregiving. The children's QoL was negatively associated with the children's self‐reported responsibilities due to parental illness, provision of emotional care for the ill parent, negative outcomes of caregiving and external locus of control. The model explained 63% of the variance (adjusted R2) in children's total QoL. Study limitations: Sampling bias may have occurred during recruitment. Conclusions: The findings suggest factors of importance for the children's QoL. Clinicians should assess whether an ill parent's physical health may influence negatively on their ability to perform daily responsibilities at home and care for their children, and clinicians can use children's self‐reported QoL to identify children who are most negatively affected. [ABSTRACT FROM AUTHOR]

Objective: To explore the general practitioners (GP's) role in providing psychosocial care for cancer survivors through a systematic literature review.Methods: We searched MEDLINE, EMBASE, PsycINFO, and CINAHL and included the studies that complied with the predefined inclusion and exclusion criteria. At least two independent reviewers performed the quality appraisal and data extraction.Results: We included 33 (five qualitative, 19 observational, and nine intervention) studies; the majority of these studies focused on care for depression and anxiety (21/33). Cancer survivors were more likely to contact their GP for psychosocial problems compared with noncancer controls. Survivors were more likely to use antidepressants compared with controls, although 71% of survivors preferred depression treatment to be "talking therapy only." Overall, GPs and patients mostly agreed that GPs are the preferred healthcare provider to manage psychosocial problems. The major exception is a survivor's fear of recurrence-here, the oncologist was the preferred healthcare provider. Only two interventions effectively decreased depression or anxiety; these studies included patients who had a clinical indication for psychosocial care, were specifically designed for decreasing depression/anxiety, and consisted of a multidisciplinary team approach. The other interventions evaluated GP-led follow-up for cancer survivors and found that this did not impact the patients' levels of anxiety, depression, or distress neither negatively nor positively.Conclusions: Cancer survivors often prefer psychosocial care by their GP, and GPs generally consider they are well placed to provide this care. Although evidence on the effectiveness of psychosocial care by GPs is limited, an active multidisciplinary team approach seems key. [ABSTRACT FROM AUTHOR]

Objective: To evaluate the longitudinal responsiveness (sensitivity to change) of the Patient-Reported Outcomes Measurement Information System (PROMIS) Global Health Short Form (PROMIS10) in outpatients with systemic lupus erythematosus (SLE).Methods: Outpatients with SLE who were receiving care at an academic medical center completed the PROMIS10 at 2 visits that were a minimum of 1 month apart. Responsiveness of the PROMIS10 global physical and mental health domains to Patient-Reported improvement or deterioration of health status was evaluated, as measured by standard validated instruments. Effect sizes of changes in PROMIS10 scores between visits were evaluated using Kruskal-Wallis testing.Results: A total of 223 SLE patients enrolled and completed baseline surveys, with 186 (83.4%) completing a second set of questionnaires. The PROMIS10 demonstrated mild-to-moderate responsiveness to Patient-Reported improvement (effect size 0.29) and worsening (effect sizes -0.27 and -0.54) of health status for both global physical health and global mental health. Changes in the PROMIS10 correlated poorly with changes in physician-reported measures of disease activity.Conclusion: The PROMIS10 showed responsiveness over time to Patient-Reported changes in SLE health status, but not physician-assessed changes. These data suggest that the PROMIS10 can be used to efficiently measure and monitor important aspects of the SLE patient experience that are not captured by standard physician-derived metrics. Further studies are needed to evaluate the role of the PROMIS10 in optimizing longitudinal disease management in SLE and to determine its responsiveness in other chronic health conditions. [ABSTRACT FROM AUTHOR]

Objective: The current multicentre randomized controlled trial assessed the clinical efficacy of a combined mHealth intervention for eating disorders (EDs) based on cognitive behavioral therapy (CBT). Method: A total of 106 ED patients from eight different public and private mental health services in Spain were randomly assigned to two parallel groups. Patients of the experimental group (N = 53) received standard face‐to‐face CBT plus a mobile intervention through an application called "TCApp," which provides self‐monitoring and an online chat with the therapist. The control group (N = 53) received standard face‐to‐face CBT only. Patients completed self‐report questionnaires on ED symptomatology, anxiety, depression, and quality of life, before and after treatment. Results: Significant reductions in primary and secondary outcomes were observed for participants of both groups, with no differences between groups. Results also suggested that the frequency with which patients attended their referral mental health institution after the intervention was lower for patients in the experimental group than for those in the control group. Discussion The current study showed that CBT can help to reduce symptoms relating to ED, regardless of whether its delivery includes online components in addition to traditional face‐to‐face treatment. Besides, the additional component offered by the TCApp does not appear to be promising from a purely therapeutic perspective but perhaps as a cost‐effective tool, reducing thus the costs and time burden associated with weekly visits to health professionals. [ABSTRACT FROM AUTHOR]

Objective: American-style football (ASF) has gained attention because of possible links between repetitive head injury and neurodegenerative diseases. Although postmortem pathologic changes consistent with chronic traumatic encephalopathy (CTE) have been reported in ASF players, there are currently no established premortem diagnostic criteria for CTE. Nevertheless, presented with symptoms of cognitive impairment, clinicians treating former players may be inclined to suggest CTE without a thorough exploration of comorbid factors that demonstrate similar clinical phenotypes to putative CTE.Methods: A survey of 3,913 former ASF players aged 24 to 89 was conducted for those who responded by March 2019.Results: Despite being a postmortem diagnosis, 108 players (2.8%) self-reported clinician-diagnosed CTE. The percentage of players under age 60 years reporting a CTE diagnosis was 2.3% versus 3.7% in participants age 60 or older. Comorbidities in participants self-reporting CTE were significantly more common, including sleep apnea, hypercholesterolemia, obesity, indicators of past or current depression, hypertension, prescription pain medication use, heart conditions, and low testosterone when compared to non-CTE respondents. Patterns of reporting for obesity, hypertension, heart conditions, or hypercholesterolemia differed between older and younger participants. Cognitive impairment symptoms were significantly higher in participants self-reporting CTE.Interpretation: Some former professional football players have been clinically diagnosed with CTE, a postmortem condition. Comorbidities that can affect cognition were associated with CTE diagnoses in both older and younger players. Although underlying neuropathology cannot be ruled out, treatable conditions should be explored in former athletes demonstrating CTE-linked clinical phenotypes or symptoms as a means of improving cognitive health in these patients. ANN NEUROL 2020 ANN NEUROL 2020;88:106-112. [ABSTRACT FROM AUTHOR]

Objective: Prolonged grief disorder (PGD) and major depressive disorder (MDD) are common syndromes shaping bereaved caregivers' quality of life (QOL). However, distinctiveness of these syndromes warrants confirmation, and the temporal relationship of PGD and MDD symptoms has not been established. To fill these knowledge gaps, we conducted this longitudinal study.Methods: PGD symptoms, depressive symptoms, and psychological QOL were measured over 398 caregivers' first 2 years of bereavement using the Prolonged Grief-13 (PG-13) scale, Center for Epidemiologic Studies-Depression (CES-D) scale, and Short Form-36 Health Survey mental health summary, respectively. To clarify the distinctiveness of PGD and MDD symptoms, we examined their associations with psychological QOL by incremental validity testing. Distinctiveness and temporal relationship of PGD and MDD symptoms were also examined using longitudinal, lower-level mediation analysis with a lagged approach.Results: After the variance in psychological QOL was explained by CES-D scores (pseudo-R2 = 44.19%, P < .001), PG-13 scores significantly, incrementally increased the explained variance in psychological QOL (pseudo-R2 = 0.21%, P < .001), confirming the distinctiveness of PGD and MDD symptoms. CES-D scores mediated 40.7% of the time vs PG-13 score relationship, whereas PG-13 scores mediated 78.2% of the time vs CES-D score relationship with a better model fit, indicating that PG-13 scores assessed earlier mediated caregivers' current depressive status rather than vice versa.Conclusions: PGD and MDD are distinct constructs, and PGD precedes onset of MDD. Clinicians should distinguish between these two disorders and address bereaved caregivers' PGD to reduce PGD-associated distress and morbidity and to prevent MDD onset, thereby improving their QOL. [ABSTRACT FROM AUTHOR]

Objective: We performed a randomized controlled trial (RCT) to investigate whether regular screening with the distress thermometer (DT) by a nurse improved global quality of life (QOL) of patients with breast cancer (BC) treated with curative intent.Methods: BC patients were randomized between regular screening for distress with a nurse-led DT intervention (NDTI) and usual care (UC). Both groups filled out questionnaires at baseline, after each received treatment modality and at follow-up visits up to 2 years. At these points, the intervention group received also the NDTI. The primary outcome was the global QOL of the EORTC QLQ C30 at 2 years after the end of treatment. Analyses were done on an intention-to-treat basis, using analysis of covariance (ANCOVA), generalized least squares, and interaction analyses.Results: Of 194 randomized patients, 153 filled out the questionnaires up to 2 years after treatment. There was no significant difference between NDTI and UC in global QOL 2 years after the end of treatment (mean diff. = -1∙273, P = .610; 95% CI [-6.195; 3.649]). Subgroup analysis of patients who received multimodality treatment (surgery, radiotherapy, and chemotherapy, n = 66) showed a significant between-group difference in global QOL over time (mean diff. = -10, P < .001; 95% CI [-14.835; -5.167]) together with other secondary outcome measures in favor of the NDTI.Conclusion: NDTI did not lead to a significant improvement in global QOL 2 years after the end of treatment for patients with BC. However, the findings indicate that BC patients who received multimodality treatment may benefit from NDTI. [ABSTRACT FROM AUTHOR]

Objective: Apply the National Institutes of Health (NIH) Stage Model to design and test an intervention to prevent depression in breast cancer patients at risk for depression.Methods: We identified mindful emotion awareness, along with approach and avoidance strategies for cancer-related coping and emotion regulation, as targets for a preventive intervention adapted from the Unified Protocol for Transdiagnostic Treatment of Emotional Disorders. Patients' preferences for individual, in-person, and time-efficient sessions informed the design. Patients at risk for depression received a 6-week, 5-hour intervention with daily exercises. Intervention targets were assessed at baseline, before each session, and 4-weeks post intervention. Mixed effects analysis of variance (ANOVA) assessed change over the follow-up period, controlling for age, partnered status, and disease stage.Results: Fifty-five percent (40/72) of women screened within 6 months of diagnosis had elevated depression risk. Of these, 24 (60%) signed consent. Sixteen received intervention after five were excluded for current depressive disorder, cognitive impairment, or death. Three dropped out. Ninety-eight percent attendance and 77% practice days indicated feasibility. Effect sizes (Cohen's d) corrected for regression to the mean (RTM) were 0.82 for cancer-related acceptance coping, 0.65 for cancer-related emotional expression, and 0.32 and 0.42 for decreased cancer-related avoidance coping and depressive symptoms, respectively. Effect sizes for variables lacking data to correct for RTM were 1.0, 0.7, and 0.5 for decreased rumination, experiential avoidance, and fear of depression, respectively, and 1.3, 0.6, and 0.4 for increased cognitive flexibility, distress tolerance, and describing/not judging emotions, respectively.Conclusions: The feasibility of this intervention and malleability of its targets support its further investigation. [ABSTRACT FROM AUTHOR]

Background: Barrett's oesophagus (BO), a precursor to oesophageal adenocarcinoma, requires long‐term endoscopic surveillance. The rising incidence of this chronic disease has implications for service provision and patient burden. Few studies have explored BO patients' personal burden, care delivery experience and participation in health‐care delivery decisions. Objective: To identify and explore factors impacting BO patients' health‐related quality of life, follow‐up needs and views on new models of follow‐up care. Design: An exploratory qualitative approach was adopted using semi‐structured, in‐depth, one‐to‐one interviews, audio‐recorded and transcribed verbatim. Patients undergoing BO surveillance, at a single NHS hospital, were recruited using purposive sampling with the aim of achieving maximum variation. Data were analysed using framework analysis approach, supported by NVivo Pro 11. Results: Data saturation occurred after 20 participant interviews. Ten subthemes and three main themes emerged from the analysis: (a) burden of disease—symptom control, worry of oesophageal cancer and surveillance endoscopy; (b) follow‐up experiences—follow‐up care, at this NHS hospital, was found to be inconsistent and often inadequate to meet patients' needs, in particular a lack of disease‐specific information; and (c) follow‐up needs—participants sought enhanced communication, organization and structure of care. They highly valued face‐to‐face interaction with a specialist, and the concept of direct secondary care access in‐between endoscopies was reassuring to participants. Conclusions: This qualitative research provides an in‐depth account of the patients' perspective of BO, the effectiveness of follow‐up care and patient opinion on new follow‐up systems. [ABSTRACT FROM AUTHOR]

This study presents psychometric properties of the Danish version of the Sources of Meaning and Meaning in Life Scale (SoMe‐Da) and associations to socio‐demographic and religious characteristics. Participants were 554 Danes, 66% women ranging in age between 15 and 91 years. Exploratory factor analysis (EFA) suggested a five factor structure for the 26 sources if meaning. Construct validity within the SoMe‐Da and between mental health variables were established. Generativity associated most strongly with meaningfulness followed by spirituality, attentiveness, and explicit religiosity. We found religious characteristics to be more strongly associated with meaningfulness than socio‐demographic variables. Finally, we found distinct patterns of preferred sources of meaning between Christians, agnostics, and atheists. Christians and agnostics seemed to be more motivated by self‐transcendance, whereas atheists may be more motivated by self‐actualization. Results indicate that the SoMe‐Da appears to be a valid instrument for measuring the content and degree of personal meaning in life. [ABSTRACT FROM AUTHOR]

Introduction: The Amyotrophic Lateral Sclerosis (ALS)-Specific Quality of Life instrument and its revised version (ALSSQOL and ALSSQOL-R) have strong psychometric properties, and have demonstrated research and clinical utility. In this study we aimed to develop a short form (ALSSQOL-SF) suitable for limited clinic time and patient stamina.Methods: The ALSSQOL-SF was created using Item Response Theory and confirmatory factor analysis on 389 patients. A cross-validation sample of 162 patients assessed convergent, divergent, and construct validity of the ALSSQOL-SF compared with psychosocial and physical functioning measures.Results: The ALSSQOL-SF consisted of 20 items. Compared with the ALSSQOL-R, optimal precision was retained, and completion time was reduced from 15-25 minutes to 2-4 minutes. Psychometric properties for the ALSSQOL-SF and its subscales were strong.Discussion: The ALSSQOL-SF is a disease-specific global QOL instrument that has a short administration time suitable for clinical use, and can provide clinically useful, valid information about persons with ALS. Muscle Nerve 58: 646-654, 2018. [ABSTRACT FROM AUTHOR]

Abstract: Background and Aims: Extended‐release naltrexone (XR‐NTX), a μ‐opioid receptor antagonist for prevention of relapse to opioid dependence, has demonstrated efficacy compared with placebo and comparative effectiveness with buprenorphine–naloxone. We report outcomes for XR‐NTX in Vivitrol's Cost and Treatment Outcomes Registry. Design: Observational, open‐label, single‐arm, multi‐center registry assessing baseline characteristics and clinical and health‐related quality‐of‐life outcomes associated with XR‐NTX treatment in clinical practice. Setting: 32 US treatment centers from 2011 to 2013. Participants: Patients with opioid dependence who were prescribed XR‐NTX treatment and then enrolled into the registry. Measurements: Monthly visits were evaluated for the full population and for patient ubgroups retrospectively, defined by injection number, focusing on the period between baseline and month 6 (1‐, 2/3‐ or 6‐XR‐NTX). Findings: Of 403 enrolled patients, 395 were analyzed. Most patients (n = 349) received out‐patient care. On average, patients received five injections (median = 3; range = 1–25). The median number of injections administered within 6 months was higher in patients who at baseline were employed (three versus two unemployed, P = 0.02) or had private insurance (five versus two self‐payment, P = 0.005; versus two state‐funded, P < 0.001). The 1‐, 2/3‐ and 6‐XR‐NTX groups had 132, 152 and 111 patients, respectively. At baseline, the 6‐XR‐NTX patients were more likely to meet normal/minimal mental illness criteria and attend school and less likely to report recent drug use. Within 6 months, the 6‐XR‐NTX group demonstrated improvements in employment, mental health and psychosocial functioning, and decreases in opioid craving, drug use and drug‐related behavior. Conclusions: Among opioid‐dependent people receiving XR‐NTX treatment, better mental health, higher education and lower recent drug use at baseline are associated with greater treatment duration; in turn, longer treatment duration is associated with lower relapse rates and improved outcomes generally. [ABSTRACT FROM AUTHOR]

Introduction: Earlier small case series and clinical observations reported on chronic pain playing an important role in facioscapulohumeral dystrophy (FSHD). The aim of this study was to determine the characteristics and impact of pain on quality of life (QoL) in patients with FSHD.Methods: We analyzed patient reported outcome measures collected through the U.K. FSHD Patient Registry.Results: Of 398 patients, 88.6% reported pain at the time of study. The most frequent locations were shoulders and lower back. A total of 203 participants reported chronic pain, 30.4% of them as severe. The overall disease impact on QoL was significantly higher in patients with early onset and long disease duration. Chronic pain had a negative impact on all Individualised Neuromuscular Quality of Life Questionnaire domains and overall disease score.Discussion: Our study shows that pain in FSHD type 1 (FSHD1) is frequent and strongly impacts on QoL, similar to other chronic, painful disorders. Management of pain should be considered when treating FSHD1 patients. Muscle Nerve 57: 380-387, 2018. [ABSTRACT FROM AUTHOR]

Objective: In this study, we investigated what makes a symptom or functional impairment clinically important, that is, relevant for a patient to discuss with a health care professional (HCP). This is the first part of a European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group project focusing on the development of thresholds for clinical importance for the EORTC QLQ-C30 questionnaire and its corresponding computer-adaptive version.Methods: We conducted interviews with cancer patients and HCPs in 6 European countries. Participants were asked to name aspects of a symptom or problem that make it clinically important and to provide importance ratings for a predefined set of aspects (eg, need for help and limitations of daily functioning).Results: We conducted interviews with 83 cancer patients (mean age, 60.3 y; 50.6% men) and 67 HCPs. Participants related clinical importance to limitations of everyday life (patients, 65.1%; HCPs, 77.6%), the emotional impact of a symptom/problem (patients, 53.0%; HCPs, 64.2%), and duration/frequency (patients, 51.8%; HCPs, 49.3%). In the patient sample, importance ratings were highest for worries by partner or family, limitations in everyday life, and need for help from the medical staff. Health care professionals rated limitations in everyday life and need for help from the medical staff to be most important.Conclusions: Limitations in everyday life, need for (medical) help, and emotional impact on the patient or family/partner were found to be relevant aspects of clinical importance. Based on these findings, we will define anchor items for the development of thresholds for clinical importance for the EORTC measures in a Europe-wide field study. [ABSTRACT FROM AUTHOR]

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Introduction: Slowly progressive, genetic neuromuscular diseases (gNMDs) often lead to important motor deficiencies and functional limitations. The Quality of Life in Genetic Neuromuscular Disease Questionnaire (QoL-gNMD) is a new health-related quality-of-life questionnaire developed for these patients. The purpose of the present study was to validate the French version of the QoL-gNMD and to calibrate its measurement system.Methods: Both the QoL-gNMD and a validated generic questionnaire (WHOQOL-BREF) were administered to patients. Validation was performed using item response theory. The partial credit model (Rasch) was used to calibrate each domain.Results: Three hundred fifteen adult patients were included. All 3 domains showed adequate psychometric properties (internal consistency: person separation index >0.77; repeatability: test-retest intraclass correlation coefficient >0.75, scalability coefficient >0.38) and fitted the partial credit model. The QoL-gNMD also demonstrated adequate concurrent validity with the WHOQOL-BREF.Discussion: The QoL-gNMD showed adequate psychometric properties and can be used in clinical settings. Although not anchor-based, the minimum detectable change tables help in interpreting score change. Muscle Nerve 56: 1085-1091, 2017. [ABSTRACT FROM AUTHOR]

PURPOSE This study aimed to validate the definition and define the characteristics and related factors of unemployment disorder, a proposed nursing diagnosis. METHODS Using Fehring's diagnostic content validity model, Spanish experts were asked to assess the adequacy of the label, defining the characteristics and other related factors. FINDINGS The content validity index was 0.8690. A total of 16 defining characteristics reached major criteria (>0.80). CONCLUSION The present study supports the proposed development of a nursing diagnosis for the human response to unemployment. PRACTICE IMPLICATIONS The results suggest that the inclusion of the 'unemployment disorder' diagnostic NANDA-I taxonomy would allow nursing professionals to identify the disorder and its causes and manifestations, and therefore provide the information needed for planning more relevant interventions and results. OBJETIVO Validación de la definición, características definitorias y factores relacionados de trastorno por desempleo, una propuesta de diagnóstico enfermero. METODOLOGÍA Usando el modelo de validación de contenido de Fehring, se consensuó mediante expertos españoles la denominación de la etiqueta, las características definitorias y otros factores relacionados. RESULTADOS El índice de validez de contenido global fue 0.8690. Un total de 16 características definitorias alcanzaron carácter crítico (>0.80). CONCLUSIÓN El presente estudio apoya la propuesta de elaborar un diagnóstico de enfermería para la respuesta humana al desempleo. IMPLICACIONES PRÁCTICAS Los resultados obtenidos sugieren que la inclusión en la taxonomía NANDA-I del diagnóstico 'trastorno por desempleo' permitiría a los profesionales de enfermería identificar el problema, sus causas y manifestaciones, y por lo tanto ofrecerían la información necesaria para planificar las intervenciones y resultados más pertinentes. [ABSTRACT FROM AUTHOR]

Objective: In a pilot randomized controlled trial, examine the feasibility and preliminary efficacy of an 8-week, mindfulness training program (Mindfulness Based Stress Reduction) in a sample of men on active surveillance on important psychological outcomes including prostate cancer anxiety, uncertainty intolerance and posttraumatic growth.Methods: Men were randomized to either mindfulness (n = 24) or an attention control arm (n = 19) and completed self-reported measures of prostate cancer anxiety, uncertainty intolerance, global quality of life, mindfulness and posttraumatic growth at baseline, 8 weeks, 6 months and 12 months.Results: Participants in the mindfulness arm demonstrated significant decreases in prostate cancer anxiety and uncertainty intolerance, and significant increases in mindfulness, global mental health and posttraumatic growth. Participants in the control condition also demonstrated significant increases in mindfulness over time. Longitudinal increases in posttraumatic growth were significantly larger in the mindfulness arm than they were in the control arm.Conclusions: While mindfulness training was found to be generally feasible and acceptable among participants who enrolled in the 8-week intervention as determined by completion rates and open-ended survey responses, the response rate between initial enrollment and the total number of men approached was lower than desired (47%). While larger sample sizes are necessary to examine the efficacy of mindfulness training on important psychological outcomes, in this pilot study posttraumatic growth was shown to significantly increase over time for men in the treatment group. Mindfulness training has the potential to help men cope more effectively with some of the stressors and uncertainties associated with active surveillance. Copyright © 2016 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Objectives Willingness-to-pay ( WTP) provides a broad assessment of well-being, capturing benefits beyond health. However, the validity of the approach has been questioned and the evidence relating to the sensitivity of WTP to changes in health status is mixed. Using menorrhagia (heavy menstrual bleeding) as a case study, this exploratory study assesses the sensitivity to scale of WTP to change in health status as measured by a condition-specific measure, MMAS, which includes both health and non-health benefits. The relationship between EQ-5D and change in health status is also assessed. Methods Baseline EQ-5D and MMAS values were collected from women taking part in a randomized controlled trial for pharmaceutical treatment of menorrhagia. Following treatment, these measures were administered along with a WTP exercise. The relationship between the measures was assessed using Spearman's correlation analysis, and the sensitivity to scale of WTP was measured by identifying differences in WTP alongside differences in MMAS and EQ5D values. Results Our exploratory findings indicated that WTP, and not EQ-5D, was significantly positively correlated with change in MMAS, providing some evidence for convergent validity. These findings suggest that WTP is capturing the non-health benefits within the MMAS measure. Mean WTP also increased with percentage improvements in MMAS, suggesting sensitivity to scale. Conclusion When compared to quality of life measured using the condition-specific MMAS measure, the convergent validity and sensitivity to scale of WTP is indicated. The findings suggest that WTP is more sensitive to change in MMAS, than with EQ-5D. [ABSTRACT FROM AUTHOR]

Often considered to be a symptomless condition, hypertension can be associated with a significant emotional burden. To analyze changes of health-related quality of life as well as the emotional burden questions regarding the impact of hypertension were incorporated into the noninterventional SeviTarget study. Comparisons were made between baseline and follow-up findings, and between patients with treatment target achievement and those without. A total of 5831 patients were recruited. At baseline, only 33.3% of patients described their current state of health as good or excellent, while at follow-up this value had risen to 75.8%. Responses regarding symptoms and limitations in activities and mental factors such as anxiety associated with treatment all improved during antihypertensive treatment. Changes to more optimistic responses were more likely for patients who achieved a target BP of <140/90 mm Hg. The study demonstrates that improvements in quality of life and the perceived emotional burden related to hypertension can be achieved with effective management of hypertension. [ABSTRACT FROM AUTHOR]

Objectives: Caregiving can negatively impact well-being. Cancer caregivers face unique challenges given the intense nature of cancer and treatment, which increases their risk for burden, poor quality of life (QOL), and burnout. Studies to reduce caregiver burden demonstrate QOL improvement and distress reduction in the short term. However, few studies exist to address long-term benefits. We assessed changes in various QOL domains after participation in a QOL intervention for caregivers of patients having newly diagnosed advanced cancer.Methods: Our institutional review board-approved study randomized patient-caregiver dyads to either usual care or an in-person group intervention composed of six 90-min sessions of structured multidisciplinary QOL components delivered over 4 weeks, with 10 follow-up phone calls within 20 weeks. Caregivers attended four of the six sessions attended by patients. Sessions included physical therapy, coping and communication strategies, mental health education, spirituality, and social needs. Caregiver QOL (Caregiver Quality of Life Index-Cancer Scale [CQOLC] and Linear Analogue Self-Assessment [LASA]) and mood (Profile of Mood States-Brief [POMS-B]) were measured at baseline and 4, 27, and 52 weeks. Wilcoxon tests and effect sizes were used to compare the caregiver groups.Results: Of the 131 caregivers (65 intervention and 66 usual care), 116 completed the study. Caregivers post-intervention (at 4 weeks) had improved scores on LASA Spiritual Well-being; POMS-B total score, Vigor/Activity, and Fatigue/Inertia; and CQOLC Adaptation. At long term (at 27 weeks), caregivers retained improvement in POMS-B Fatigue/Inertia and gained improvements in CQOLC Disruptiveness and Financial Concerns.Conclusions: Caregivers who received the intervention had higher QOL ratings for specific QOL domains but not for overall QOL. Although a comprehensive intervention was helpful, more specific, targeted interventions tailored for individual needs are recommended. Copyright © 2015 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Objectives: The prevalence of neuropsychiatric symptoms in cognitively impaired nursing home residents is known to be very high, with depression and agitation being the most common symptoms. The possible effects of a 12-week intervention with animal-assisted activities (AAA) in nursing homes were studied. The primary outcomes related to depression, agitation and quality of life (QoL).Method: A prospective, cluster randomized multicentre trial with a follow-up measurement 3 months after end of intervention was used. Inclusion criteria were men and women aged 65 years or older, with a diagnosis of dementia or having a cognitive deficit. Ten nursing homes were randomized to either AAA with a dog or a control group with treatment as usual. In total, 58 participants were recruited: 28 in the intervention group and 30 in the control group. The intervention consisted of a 30-min session with AAA twice weekly for 12 weeks in groups of three to six participants, led by a qualified dog handler. Norwegian versions of the Cornell Scale for Depression, the Brief Agitation Rating Scale and the Quality of Life in Late-stage Dementia scale were used.Results: A significant effect on depression and QoL was found for participants with severe dementia at follow-up. For QoL, a significant effect of AAA was also found immediately after the intervention. No effects on agitation were found.Conclusions: Animal-assisted activities may have a positive effect on symptoms of depression and QoL in older people with dementia, especially those in a late stage. Copyright © 2016 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Objectives: The aim of this study was to verify the efficacy of a manualized, cognitively oriented psychological intervention, called Mental Fitness, in improving the mental and physical health of patients with acute coronary syndrome (ACS). Mental Fitness is a small-group four-session treatment aimed at increasing awareness of one's own bodily perceptions, emotions, and thoughts and is overall tailored on participants' perception of control over their health.Design: Prospective randomized controlled single-blind trial.Methods: Patients with ACS were recruited within a week from their acute cardiac event. Patients in the intervention group underwent one of two variants of Mental Fitness, depending on their perceived (internal or external) control over their health. Patients in the control group underwent standard treatment. All the patients were submitted to a clinical and psychological follow-up for 8 months.Results: The patients who underwent the Mental Fitness intervention (N = 31) showed, compared to the control patients (N = 34), increased quality of life in its physical, psychological, social and environmental domains, more functional emotional and problem-centred coping strategies, and higher emotional awareness. They also showed improved high-density lipoprotein cholesterol, triglycerides, heart rate, and left ventricular ejection fraction compared to the controls. In addition, they were more successful in maintaining physical exercise.Conclusions: This study demonstrates the efficacy of Mental Fitness in modifying specific psychological and physical variables conditioning cardiological patients' prognosis. It also confirms the importance of differentiating psychological interventions based on the psychological characteristics of the patients. Statement of contribution What is already known on this subject? Traditional symptom-based interventions in heart disease are aimed at diagnosing and reducing psychological symptomatology (e.g., depression), but recent work has shown the usefulness of orienting psychological interventions to patients' representations of themselves and of the world and to how such representations influence their thoughts, feelings, and behaviours (e.g., Chiavarino et al., ). What does this study add? Mental Fitness, by working on awareness of bodily perceptions, emotions, and thoughts, leads to positive changes in physical and psychological health. Mental Fitness is a cost-effective psychological intervention that adds significantly to the effectiveness of standard medical care. [ABSTRACT FROM AUTHOR]

Background: Mindfulness-based cancer recovery (MBCR) and supportive expressive group therapy (SET) are two well-validated psychosocial interventions, but they have not been directly compared, and little is known about long-term outcomes. This comparative effectiveness study measured the effects of these two interventions immediately following the groups and for 1 year thereafter in distressed breast cancer survivors.Methods: Two hundred fifty-two distressed Stage I-III breast cancer survivors were randomized into either MBCR or SET. Women completed questionnaires addressing mood, stress symptoms, quality of life, social support, spirituality and post-traumatic growth before and after the interventions, and 6 and 12 months later.Results: Immediately following the intervention, women in MBCR reported greater reduction in mood disturbance (primarily fatigue, anxiety and confusion) and stress symptoms including tension, sympathetic arousal and cognitive symptoms than those in SET. They also reported increased emotional and functional quality of life, emotional, affective and positive social support, spirituality (feelings of peace and meaning in life) and post-traumatic growth (appreciation for life and ability to see new possibilities) relative to those in SET, who also improved to a lesser degree on many outcomes. Effect sizes of the time × group interactions were small to medium, and most benefits were maintained over 12 months of follow-up.Conclusions: This study is the first and largest to demonstrate sustained benefits of MBCR in distressed breast cancer survivors relative to an active control. MBCR was superior to SET for improving psychological well-being with lasting benefits over 1 year, suggesting these women gained long-lasting and efficacious tools to cope with cancer.Trial Registration: Registered on clinicaltrials.gov number NCT00390169, October 2006. Copyright © 2016 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Objective: The main aim was to investigate the development of health-related quality of life (HRQOL) and symptoms of anxiety and depression in a cohort diagnosed with cancer during adolescence from shortly after up to 10 years after diagnosis.Methods: Participants (n = 61) completed the SF-36 and the HADS shortly; six, 12, and 18 months; and two, three, four, and 10 years (n = 28) after diagnosis. Polynomial change trajectories were used to model development.Results: Polynomial change trajectories showed an initial increase which abated over time into a decrease which abated over time for the SF-36 subscales Mental Health and Vitality; an initial decline which abated over time into an increase for HADS anxiety; and an initial decline which abated over time into an increase which abated over time for HADS depression. The SF-36 mental component summary showed no change from two to 10 years after diagnosis whereas the SF-36 physical component summary showed an increase from two years after diagnosis which declined over time. Ten years after diagnosis 29% reported possible anxiety.Conclusions: Development of HRQOL and symptoms of anxiety and depression appears to be non-linear among persons diagnosed with cancer during adolescence. Well into permanent survivorship an increase in symptoms of anxiety is shown and approximately a third of the participants report possible anxiety. The findings indicate the need for: studies designed to pinpoint the times of highest psychological risk, clinical follow-up focusing on psychological problems, and development of effective psychological interventions for survivors of adolescent cancer. © 2015 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd. [ABSTRACT FROM AUTHOR]

Objective: The Impact of Events Scale (IES) is one of the most widely used measures of event-specific distress. The IES assesses the frequency with which respondents experience intrusive thoughts and avoidant behaviors over the past week. Our aim is to demonstrate the benefit of a severity-based measurement approach of the IES compared with a frequency-based measurement approach. Methods: A mixed group of post-treatment cancer survivors (N = 325; M = 31.8 years old) completed measures assessing quality of life (Functional Assessment of Cancer Therapy-General), psychological adjustment (Mental Health Inventory), and cancer-related distress (IES). The IES was keyed to the cancer experience and administered with standard (frequency) and modified (severity) response options. Results: Classical reliability analyses and bifactor modeling were conducted on both versions of the IES. Reliability estimates suggest that the IES severity items were more highly intercorrelated than the IES frequency items. Both versions of the IES were highly correlated (r = 0.82), showing the presence of a dominant general factor. Bifactor modeling suggested that the severity items generally provided higher levels of discrimination than the frequency items. Validity correlations with the Functional Assessment of Cancer Therapy-General and Mental Health Inventory demonstrated that the IES severity performed as good as or better than the IES frequency. Conclusions: Given the high correlations and similarity in content, the IES severity items largely assess the same construct as the IES frequency items. However, IES severity items generally showed improved psychometric properties and similar or higher correlations with quality of life and psychological adjustment. The IES severity approach appears to be a more informative method for assessing cancer-specific distress. [ABSTRACT FROM AUTHOR]

Background: Cancer patients suffer from severe distress. About one third show mental comorbidities. Nevertheless, there is no common agreement on how to measure distress or identify patients in need for psychooncological services using screening questionnaires.Patients and Methods: A sample of N = 206 patients with confirmed breast cancer, being inpatient for surgical treatment, filled in distress assessment instruments: Distress Thermometer, Hospital Anxiety and Depression Scale, Patient Health Questionnaire 2, Hornheider Screening Instrument and parts of the EORTC-QLQ-C30. Additionally, they were asked for their subjective need for psychooncological counselling.Results: The correlation between the assessment instruments is low to medium. The number of patients above the cut-off criteria varies quite a lot according to the instrument (10% to 66%). Therefore, the congruence between the instruments' indications is quite low. Patients with and without subjective need do not differ in personal data but in distress scores.Conclusions: Recommended instruments for distress assessment in psychooncology measure different areas of distress. They do not sufficiently agree in indicating a patient's need for psychooncological treatment. Hence, one should neither compare results of studies using different assessment instruments nor implement a screening without reflecting the used instrument's characteristics compared to the others. The subjective need seems to provide additional information to the assessment. At present, the combination of an assessment instrument and patients' subjective need is seen as a best practice for identifying patients in need of psychooncological treatment. [ABSTRACT FROM AUTHOR]

Background: Distancing (i.e. construing oneself as dissimilar to a negatively-stereotyped group) preserves self-esteem and may benefit other domains of subjective well-being. Head and neck cancer (HNC) is stigmatized because major risk factors include avoidable lifestyle variables (smoking, alcohol consumption, and human papilloma virus). Because the benefits of coping efforts, such as distancing, are most evident when people are under stress, we hypothesize that the psychosocial benefits of distancing will be most pronounced when cancer and its treatment interfere substantially with participation in valued activities and interests (i.e. high illness intrusiveness).Objective: To test whether distancing preserves self-esteem and other domains of subjective well-being (SWB) in HNC, especially when illness intrusiveness is high.Methods: Five hundred and twenty-two HNC outpatients completed a semantic-differential measure of perceived similarity to the 'cancer patient' and measures of illness intrusiveness, self-esteem, depressive symptoms, and psychological well-being in structured interviews. Evaluations of the 'cancer patient' reflected cancer stereotypes.Results: A statistically significant interaction supported the central hypothesis: When people held negative stereotypes, those who construed themselves as similar to the 'cancer patient' reported lower self-esteem than those who construed themselves as dissimilar. Distancing did not benefit other SWB variables. Some results were counter-intuitive: e.g. Emotional distress increased with increasing illness intrusiveness when people did not hold negative cancer stereotypes, but when they held highly negative stereotypes, distress decreased with increasing illness intrusiveness.Conclusions: Overall, distancing preserved self-esteem in people with HNC and was associated with benefits in other SWB domains. [ABSTRACT FROM AUTHOR]