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Background: Medication‐overuse headache (MOH) is one of the most common chronic headache disorders and represents a public health problem. Aim: As we have encountered cases of MOH treated effectively using yokukansan, we planned to analyze the effects of yokukansan on MOH in patients with migraine. Methods: To analyze the effects of yokukansan on MOH in patients with migraine, we planned the study using a double‐blind, randomized, and placebo‐controlled trial. Results: We started to register patients from October 2015, enrolling eight patients in 2015, 35 patients in 2016, 19 patients in 2017, and nine patients as of the time of writing in 2018. We have now collected 71 cases, but recruitment to the trial has not been completed. We need to register more cases to reach the desired number of 80. Conclusion: This article presents the protocol for a double‐blind, randomized, and placebo‐controlled trial to collect evidence of the effects of yokukansan on MOH. The final objective of this study is to reduce headache in MOH while maintaining patient quality of life in good condition. [ABSTRACT FROM AUTHOR]

Aims To evaluate the psychometric properties of an online versus paper US-English version of the International Consultation on Incontinence Questionnaire-Bowel (ICIQ-B). Methods The ICIQ-B includes 17 items under 3 domains: bowel pattern (5 items), bowel control (7 items), and quality of life (5 items). We recruited community-dwelling adults seeking treatment for ≥monthly bowel leakage from specialty clinics within a VA medical center and university affiliate. An online versus paper version was evaluated at baseline, 2 weeks later, and 3 months after nonsurgical treatments per usual care. We assessed test-retest reliability (Pearson correlations) at 2 weeks, internal consistency (Cronbach's alpha), and convergent validity (Pearson correlations). Sensitivity to change was the difference between the baseline and post-treatment (3-month) scores. Results Mean age was 58.0 ± 11.9; 36% Veterans, 52% women. At baseline, 2 weeks, and 3 months, we found no differences in the online vs paper scores for the bowel control and quality of life domains. The ICIQ-B demonstrated fair internal consistency for the bowel pattern domain (Cronbach's α = 0.36-0.54). Internal consistency on the bowel pattern domain was better with the paper version than the online version at 2 weeks ( P < 0.05) and 3 months ( P < 0.01) with no difference at baseline. All other domains had good internal consistency (Cronbach's α > 0.80), good retest reliability (r ≥ 0.70, P < 0.001), domain-specific convergent validity for stool consistency ( P < 0.05), incontinence severity ( P ≤ 0.002), and quality of life impact ( P < 0.05). After nonsurgical treatments, we found a reasonable response to change ( P ≤ 0.05). Conclusions Online and paper versions had robust psychometric data for use among U.S. men and women, including Veterans. Neurourol. Urodynam. 36:166-170, 2017. © 2015 Wiley Periodicals, Inc. [ABSTRACT FROM AUTHOR]

Introduction: Chronic rhinosinusitis (CRS) is associated with a significant decrease in general health-related quality of life (QOL). The EuroQol 5-dimensional questionnaire measures general health-related quality of life through a health utility value (EQ-5D HUV)-based on five domains reflecting mobility, self-care, activities of daily life, pain/discomfort, and anxiety/depression-and an unbiased visual analog scale (EQ-5D VAS). We sought to identify characteristics of CRS patients with a high EQ-5D HUV but low EQ-5D VAS score., Materials and Methods: Retrospective cross-sectional study of 300 CRS patients with EQ-5D HUV equal to 1.0 (reflecting perfect health). All patients completed a 22-item Sinonasal Outcome Test (SNOT-22)-from which nasal, sleep, ear/facial discomfort, and emotional subdomain scores were calculated, as well as the EQ-5D. Low EQ-5D VAS was defined as a score less than 80., Results: On multivariate analysis, low EQ-5D VAS was associated with only the SNOT-22 sleep subdomain score (odds ratio [OR] = 1.07, 95%CI: 1.02-1.12, P = .003). Comorbid asthma was also associated with lower EQ-5D VAS (OR = 2.16, 95%CI: 1.02-4.59, P = .045). In contrast, polyps were negatively associated with having a lower EQ-5D VAS (OR = 0.34, 95%CI: 0.17-0.69, P = .003)., Conclusion: There are patients with perfect general health-related QOL according to a health utility value-based methodology (like the EQ-5D HUV) who report low general health-related QOL on an unbiased measure like the EQ-5D VAS. In CRS patients with perfect EQ-5D HUV, poor sleep and asthma were associated with low QOL on the EQ-5D VAS, while polyps were negatively associated with low QOL., Level of Evidence: 3 Laryngoscope, 131:1206-1211, 2021., (© 2020 American Laryngological, Rhinological and Otological Society Inc, "The Triological Society" and American Laryngological Association (ALA).)

Assessment of long-term functional outcomes after meningioma surgery is important. We systematically reviewed the literature on health-related quality of life (HrQoL) and functional disability (FD) of patients after surgery for intracranial meningiomas. Using PRISMA 2015 guidelines, we screened 289 abstracts and 43 titles were retained for full-paper screening. 15 articles did not present enough data to meet the inclusion criteria and 7 articles failed to assess functional assessment and HrQoL. Twenty-two articles were included in our review. HrQol was assessed in N = 18 publications, most frequently using SF-36 (N = 10), followed by EQ5D-5L (N = 4), EORTC-QLQ (N = 4), and the FACT questionnaire (N = 2). The assessment of FD was reported in N = 11 publications, mostly using the KPS (N = 8). The Barthel index was used in N = 2 publications. Follow-up was reported in N = 12 publications, ranging from 6 months to 9 years. Scientific publications assessing long-term postoperative HrQol and FD in patients undergoing meningioma surgery are scarce and the data are heterogeneously reported, using various scales and follow-up protocols. Efforts should be undertaken to uniformly assess long-term post-operative functional outcomes in meningioma patients., (© 2021 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.)

Background and Aims: The Australian Treatment Outcomes Profile (ATOP) is a brief instrument measuring recent substance use, risk profile and general health and wellbeing among clients attending alcohol and other drug (AoD) treatment services. This study evaluates the ATOP for concurrent validity, inter-rater and test-re-test reliability among alcohol and opioid treatment groups., Design: For concurrent validity and inter-rater reliability, participants completed an ATOP with a clinician and an ATOP plus standardized questionnaires (time-line follow-back, Opiate Treatment Index, Kessler-10, 12-item Short Form Survey, World Health Organization Quality of Life-BREF, Personal Wellbeing Index) with a researcher within 3 days. For test-re-test reliability, participants completed two ATOPs with a researcher within a 3-day interval., Setting: Outpatient AoD treatment centres in Australia., Participants: For testing concurrent validity and inter-rater reliability, 278 participants were recruited by advertisements in waiting-rooms or clinician invitation during 2016 to 2018. A further 94 participants were recruited to examine test-re-test reliability., Measurements: Statistical tests used for concurrent validity and test-re-test reliability were Pearson's and Spearman's rank order correlations for continuous variables, and Cohen's κ for nominal variables. Inter-rater reliability was assessed using Krippendorf's α., Findings: Most Australian Treatment Outcomes Profile items returned excellent or moderate validity and reliability. For the main substances used-alcohol, cannabis and benzodiazepines-concurrent validity, inter-rater reliability and test-re-test reliability all reached excellent or good agreement (0.72-0.96). Psychological health, physical health and quality of life showed fair to strong agreement with their comparator scales (0.47-0.85)., Conclusions: The Australian Treatment Outcomes Profile is a validated and reliable instrument for assessing recent substance use and clinical risk, health and welfare among alcohol and opioid clients in alcohol and other drug treatment settings. Its ability to reliably measure complex constructs, such as psychological and physical health, against longer scales makes it suitable for integration into routine clinical care, enabling regular monitoring of patient outcomes and safety parameters., (© 2020 Society for the Study of Addiction.)

Objectives: Measure the quality of life among families with children with tracheostomies., Methods: We performed a prospective cross-sectional analysis of families with children with tracheostomies utilizing the PedQL Family Impact Module-a validated quality of life assessment. We determined if scores were impacted by demographics using regression analysis. We also compared the tracheostomy sample's scores to a previously published cohort of children with severe cerebral palsy and birth defects that required home nursing or nursing home placement using the student's t-test. We determined the effect size of the difference between the two groups using the Cohen's d test., Results: Ninety-eight families are included in the study. The average (SD) age of tracheostomy placement was 1.6 (3.5) years. The population was 60% (59/98) male and 39% (38/98) Hispanic. The principal reason for tracheostomy was due to respiratory failure (76 out of 98; 78%). The mean (SD) total Family Impact score was 76 (19). The lowest domain score was daily activity problems, mean (SD) = 67 (30) followed by worry (mean = 69, SD = 24). The lowest question score was, "I worry about my child's future," mean (SD) = 52 (37). When compared to the comparison group of medically fragile children, the scores were statistically similar except for communication totals where tracheostomy patients reported superior scores (78.3 vs. 62.9, 95% CI, -26 to -4.8, P = .005, Cohen's d = -0.66)., Conclusion: The presence of a tracheostomy is associated with QOL scores like other medically fragile children., Level of Evidence: 4 Laryngoscope, 131:911-915, 2021., (© 2020 American Laryngological, Rhinological and Otological Society Inc, "The Triological Society" and American Laryngological Association (ALA).)

Objectives: No hearing-related quality of life (QL) questionnaire currently exists for children < 7 years. This study aimed to develop and evaluate the construct validity and reliability of a new parent-proxy Preschool Hearing Environments and Reflection on Quality of Life (HEAR-QL) questionnaire., Methods: Parents of children 2 to 6 years old with any hearing loss (HL) were recruited from multiple sites. To evaluate the new measure's construct validity, participants completed a 70-item preschool HEAR-QL and validated questionnaires measuring hearing and communication functioning (Parents' Evaluation of Aural/Oral Performance of Children), generic pediatric QL (Pediatric Quality of Life Inventory Parent Report, PedsQL), family functioning (PedsQL Family Impact Module), and parent well-being (Patient Reported Outcomes Measurement Information System Adult Global Report). Participants completed the preschool HEAR-QL 2 weeks later to measure test-retest reliability. Exploratory principal components analysis was used to reduce the number of items and determine the underlying HEAR-QL factor structure. Analysis of variance examined HEAR-QL differences by HL., Results: Among 205 parents, 144 had children with bilateral HL, 50 had children with unilateral HL, 10 had children with normal hearing (NH), and one child's hearing status was unspecified. The 70-item questionnaire was reduced to 23 items with five underlying factors: Behavior and Attention, Hearing Environments, New Social Situations, Social Interactions, and Communication. Cronbach's alpha for each factor ranged from 0.80 to 0.91. Test-retest reliability was 0.93. Moderate-to-strong correlations (r > .300) were observed between each Preschool HEAR-QL factor and previously validated measures. Hearing Environments scores differed significantly between children with NH and any HL., Conclusion: Preschool HEAR-QL correlations with other measures supported its construct validity. Discriminant validity testing requires a larger sample of children with NH., Level of Evidence: NA Laryngoscope, 131:663-670, 2021., (© 2020 The American Laryngological, Rhinological and Otological Society, Inc.)

Pyoderma gangrenosum (PG) lacks consensus regarding treatment, and no prior studies assess treatment satisfaction in PG. The objective of this study was to determine patient-reported satisfaction in the treatment of PG, and associations with satisfaction. Methodology was a multicenter cross-sectional survey for patients who received systemic medication(s) to treat PG. Thirty-five patients completed the survey (mean age: 54.0 years, 65.7% female, response rate: 81.4%). Mean (± SD) SATMED-Q score was 75.0 (±16.2, range: 67.6-85.3). Older patients (72.6 ± 23.6 for 18-39 years, 74.4 ± 16.1 for 40-59, 77.1 ± 11.6 for 60+), plus those with higher incomes (72.9 ± 20.3 for $0-49 000; 74.0 ± 17.6 for $50 000-99 000; 79.0 ± 14.6 for $100 000+) and education status (69.4 ± 14.3 for high school equivalent, 72.9 ± 15.9 for undergraduate, 91.7 ± 10.6 for graduate), were more satisfied with treatment. Ulcerative PG had higher SATMED-Q scores (79.0 ± 13.2) than other subtypes (66.2 ± 19.3). For local therapy, wound care, or pain control, 63.2%, 100%, and 75% were satisfied, respectively. The mean DLQI was 8.6 (±7.6, range: 0-29), and higher DLQI was associated with decreased satisfaction. Satisfaction with providers was positively correlated with global satisfaction (Pearson's r = 0.638). The presence of pain and/or depression influenced both SATMED-Q (72.8 ± 18.8 with pain, 78.3 ± 11.2 without; 68.2 ± 18.8 with depression, 80.1 ± 12.2 without) and DLQI scores (12.1 ± 8.1 with pain, 3.9 ± 3.4 without; 10.3 ± 7.1 with depression, 7.4 ± 8.0 without). To optimize the patient experience, non-modifiable associations should be individually considered, and potentially modifiable associations such as satisfaction with specific providers, pain, and depression, may be targeted for management., (© 2021 Wiley Periodicals LLC.)

Objectives: Head and neck cancers (HNC) are associated with significant morbidity. Quality-of-life (QoL) analyses can assist with understanding subjective factors shaping the patient experience. Here, we assess for patient and/or tumor factors associated with increased pain reporting at the time of initial radiation oncology consultation at a single institution in 2015., Study Design: Prospective cross-sectional questionnaire research., Methods: All new patient consultations in 2015 were offered the European Organization for Research and Treatment of Cancer Quality-of-Life Questionnaire Core-30 (EORTC QLQ-C30) survey. HNC patients were also offered the EORTC QLQ-HN35 module. Retrospective chart review was performed on patients who completed the surveys. Patient demographics, tumor characteristics, and QoL responses were analyzed for potential associations. Statistical analyses were conducted using SAS v9.4 (SAS Institute, Cary, NC), with P < .05 considered significant., Results: Of 771 new patient consultations, 137 consultations were for HNC patients. Of those, 62 patients completed both surveys. HNC patients reported greater pain relative to all other disease sites (odds ratio [OR]: 2.05; P < .01). On univariate analysis of the EORTC QLQ-C30 data, increased pain was found to be associated with tumor size > 4 cm (OR: 3.05; P ≤ .05). The EORTC QLQ-HN35 data revealed lymph node involvement to be independently associated with pain (OR: 3.12; P ≤ .05). On multivariate analysis, increased pain was associated with lack of pain medication prescription at the time of consultation (P ≤ .05) and age ≥ 65 years (P ≤ .05)., Conclusion: Patients with HNC reported significantly more pain at consultation than patients with other primary malignancies. Understanding factors contributing to subjective pain may allow providers to potentially address these symptoms proactively to improve patients' QoL., Level of Evidence: 2c - Outcomes research. Laryngoscope, 131:326-332, 2021., (© 2020 The American Laryngological, Rhinological and Otological Society, Inc.)

Thanks to advances in technology such as Internet-based mapping and the development of special inks, papers and global positioning systems, map making for vision impaired people can provide a range of products (e.g., tactile, haptic and audio-tactile maps) that can improve their independence, self-confidence and everyday life. The applications of tactile maps include learning spatial concepts and geography; audio-tactile maps combined with access to geospatial information can enhance mobility and independence. In 1998, the Mapping Services Branch (MSB) of the Earth Sciences Sector of Natural Resources Canada initiated a tactile mapping program. Now referred to as the Government on Line—Mapping for the Visually Impaired Project (Natural Resources Canada 2003a), it aims to serve the community with special needs, with emphasis on those who are blind or visually impaired, their teachers and mobility instructors. This technical paper discusses the various types of tactile and audio-tactile maps of Canada developed by the MSB in cooperation with its partners and describe the current research and development activities carried out within the project. It also leads the reader to further information on audio-tactile maps and touch- and sound-based computer interfaces. [ABSTRACT FROM AUTHOR]

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

For many years the everyday reality of working parents and their children has been captured in notions of ‘quality time’ versus ‘quantity time’. On the one hand it is suggested that what families need is ‘more time’ for parents to spend together with their children and less time working. On the other hand this has been countered with arguments saying that attention has to be paid to how parents spend their time together with their children. As a result quality time is often presented through idealised images of ‘happy families’. Quality time is seen as parents engaging with their children in particular activities or outdoor excursions that create and maintain family enjoyment, care and togetherness. However, such debates are based on assumptions of what would be ‘good’ for today's children and neglect the perspective of children themselves. This paper draws on field research carried out with 10–11-year-old children on their understandings and use of time in an urban and a rural setting in the north of England. The paper points to five ‘qualities of time’ identified by children. These qualities suggest that children's views of time spent with their families cannot be seen as separate from the time they spend with friends, at school and on their own. The paper argues that the quality/quantity time conundrum needs replacing by fuller and more representative accounts of the varied aspects of time that matter for children. These need to be situated in the processes through which family, school and work life take place on a daily basis and in relation to children's life course. Copyright © 2002 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Objective The Cambridge Otology Quality of Life Questionnaire ( COQOL) is a patient-recorded outcome measurement ( PROM) designed to quantify the quality of life of patients attending otology clinics. Design Item-reduction model. A systematically designed long-form version (74 items) was tested with patient focus groups before being presented to adult otology patients (n. 137). Preliminary item analysis tested reliability, reducing the COQOL to 24 questions. This was then presented in conjunction with the SF-36 ( V1) questionnaire to a total of 203 patients. Subsequently, these were re-presented at T + 3 months, and patients recorded whether they felt their condition had improved, deteriorated or remained the same. Non-responders were contacted by post. A correlation between COQOL scores and patient perception of change was examined to analyse content validity. Setting Teaching hospital and university psychology department. Participants Adult patients attending otology clinics with a wide range of otological conditions. Main outcome measurements Item reliability measured by item-total correlation, internal consistency and test-retest reliability. Validity measured by correlation between COQOL scores and patient-reported symptom change. Results Reliability: the COQOL showed excellent internal consistency at both initial presentation ( α = 0.90) and 3 months later ( α = 0.93). Validity: One-way analysis of variance showed a significant difference between groups reporting change and those reporting no change in quality of life ( F(2, 80) = 5.866, P < 0.01). Conclusions The COQOL is the first otology-specific PROM. Initial studies demonstrate excellent reliability and encouraging preliminary criterion validity: further studies will allow a deeper validation of the instrument. [ABSTRACT FROM AUTHOR]

To cite this article: Baiardini I, Bousquet PJ, Brzoza Z, Canonica GW, Compalati E, Fiocchi A, Fokkens W, van Wijk RG, La Grutta S, Lombardi C, Maurer M, Pinto AM, Ridolo E, Senna GE, Terreehorst I, Todo Bom A, Bousquet J, Zuberbier T, Braido F. Recommendations for assessing Patient-Reported Outcomes and Health-Related quality of life in clinical trials on allergy: a GA2LEN taskforce position paper. Allergy 2010; 65: 290–295. The aim of this Global Allergy and Asthma European Network (GA2LEN) consensus report is to provide recommendations for patient-reported outcomes (PROs) evaluation in clinical trials for allergic diseases, which constitute a global health problem in terms of physical, psychological economic and social impact. During the last 40 years, PROs have gained large consideration and use in the scientific community, to gain a better understanding of patients’ subjective assessment with respect to elements concerning their health condition. They include all health-related reports coming from the patient, without involvement or interpretation by physician or others. PROs assessment should be performed by validated tools (disease-specific tools when available or generic ones) selected taking into account the aim of the study, the expected intervention effects and the determinant and confounding factors or patient-related factors which could influence PROs. Moreover, each tool should be used exclusively in the patient population following the authors’ indications without modification and performing a cross-cultural validation if the tool must be used in a language that differs from the original. The result analysis also suggests that the relevance of PROs results in any interventional study should include a pre–post assessment providing information concerning statistical differences within or among groups, rates of response for the PROs and a minimal important difference for the population. The report underlines the importance of further investigation on some topics, such as the quality assessment of existing PROs tools, the definition of inclusion and exclusion criteria and a more extensive evaluation of the correlation between PROs, besides health-related quality of life, and clinical data. [ABSTRACT FROM AUTHOR]

This state of the art paper has been developed through EuroPrevall, a European multicentre research project funded by the European Union which aims to improve quality of life for food allergic individuals. Food allergy (whether clinically diagnosed or self-perceived) represents a major health issue in Western societies and may have a considerably greater impact on society than was previously believed. However, the social impact of food allergy has never been systematically investigated using validated instruments. Combining the information from studies on health-related quality of life (HRQoL) with epidemiological data on prevalence will ultimately give some indication of the magnitude of the social impact of food allergy in Europe. HRQoL can be assessed with disease-specific questionnaires, which are being developed in EuroPrevall. These instruments will be used to identify HRQoL problems associated with food allergy, and to assess the effectiveness of interventions and to guide the development of regulatory policies. [ABSTRACT FROM AUTHOR]

Background: Small-fibre neuropathy (SFN) is a known cause for pain, however, it may be also associated with chronic itch. The clinical profile of chronic itch due to SFN is poorly defined and accordingly under-diagnosed in clinical care., Objectives: To establish the clinical profile of patients with SFN and to propose diagnostic criteria for this patient population., Methods: Clinical data from patients diagnosed with SFN [chronic generalized itch and reduced intraepidermal nerve fibre density (IENFD)] were analysed retrospectively., Results: A total of 142 patients (60 females, median age: 62.5 years) were included. Patients reported daily, moderate to severe itch intensity scores occurring mostly in attacks (62.5%). Only 11 patients experienced exclusively itch, while the remaining patients (92%) reported pruralgia (itch along with painful sensations). Burning (50%), a sensation like needle pricks (46%) and tingling (45%) were the sensory symptoms reported by most patients. Cold or ice application led to an alleviation of the symptoms. The IENFD did not correlate with itch intensity; however, patients with a severely reduced IENFD (<30% of the normative cut-off value) reported more frequently sharp, spiky and drilling sensations compared to the remaining patients. The quality of life was moderately impaired and correlated with itch intensity, whereas anxiety and depression scores were low., Conclusions: Onset of pruralgia on normal appearing skin, occurrence in attacks and symptomatic alleviation with cold/ice application should alert physicians for a possible neuropathic SFN-related origin of itch. A reduced IENFD can confirm the diagnosis of SFN., (© 2019 The Authors. Journal of the European Academy of Dermatology and Venereology published by John Wiley & Sons Ltd on behalf of European Academy of Dermatology and Venereology.)

Objectives: Brain tumor-related epilepsy patients (BTRE) have a complex profile due to the simultaneous presence of two pathologies: brain tumor and epilepsy. That illness and their treatments could induce physical, cognitive, emotional disturbances, and possible social isolation, with detrimental effect on patients' quality of life (QoL). Aim of this observational pilot study is to evaluate whether a multimodal rehabilitation pathway (MRP) consisting of epileptological follow-up, neurocognitive training, emotional support, and social support could produce an improvement in perceived quality of life of 33 patients with BTRE., Materials and Methods: Basal (T0) and 6 month (T1) evaluation with epileptological, neuropsychological, psychological state (Symptom checklist-SCL-90), social (Social questionnaire schedule-SQS), and QoL assessment (QOLIE 31-P). MRP consisted in epileptological follow-up, supportive meeting groups, social assistance; patients with cognitive deficits could also obtain a 12-week neurocognitive training., Results: We observed at T1 significant improvements in mean seizure/month (P = .02), verbal memory (word list immediate recall, P = .01; word list delayed recall P = .003), social aspects with regard to assistencial network's efficacy (SQS network P = .001) and quality of social relations (SQS socialization P < .0001). QOLIE 31-P showed a significant improvement in cognitive scale (P = .04) and a significant decrease in cognitive related distress (P = .04). No psychopathological symptoms were detected., Conclusion: After 6 months, MRP produced significant improvements in seizure control, cognitive performances, quality of social relations, patients' perception to be supported and patients' perceived quality of life related to cognitive efficacy. Future randomized trial with longer follow-up is needed to further evaluate the impact of this kind of pathway on patients' QoL., (© 2020 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.)

Background: Health literacy (HL) is a multidimensional concept with significance for self-management and health outcomes in patients with chronic kidney disease (CKD); however, research with a multidimensional perspective on HL is scarce., Objectives: This study aimed to explore the relationship between multidimensional HL, quality of life (QoL) and adherence to long-term therapy in CKD patients., Design: A descriptive single-centre cross-sectional study., Participants: Patients with CKD in stages 3-5 were recruited from the nephrology unit in a Norwegian hospital., Measurements: The Health Literacy Questionnaire (HLQ) was used to assess HL, QoL was measured by the Short Form-12 (SF-12) and a Visual Analogue Scale (VAS-QoL). Adherence to long-term therapy was measured by the Medical Adherence Rating Scale 5 (MARS-5), participants' prescription withdrawals from pharmacies, and a VAS (VAS-adherence). Hierarchical cluster analysis was performed to group patients with similar HLQ scores, and multiple linear regression analysis was performed to identify the HL dimensions that were associated with QoL and adherence to long-term therapy., Results: A total of 187 patients were included, 65% were male, and the mean (SD) age was 67 (13) years. The high-level HL group (N = 52) had significantly better QoL than patients in the mid-level (N = 106) and low-level (N = 27) HL groups. The HL dimensions "actively managing health," "actively engage with healthcare providers," "ability to find good health information" and "ability to understand health information" were predictive of QoL and adherence to long-term therapy., Conclusion: HL seems to be important for both QoL and adherence to long-term therapy., (© 2020 The Authors. Journal of Renal Care published by John Wiley & Sons Ltd on behalf of European Dialysis & Transplant Nurses Association/European Renal Care Association.)

Itch is the commonest skin-related symptom and can be influenced by visual cues as exemplified by the phenomenon of "contagious itch." Colors are visual cues able to modify somatosensory inputs. We explored the relationship of colors and itch and the impact of color viewing on itch intensity. In this cross-sectional study, patients suffering from itch with a mean intensity of ≥2 on a Numerical Rating Scale during the last 7 days were evaluated. The study consisted of a questionnaire-based part using The Manchester Color Wheel and the ItchyQoL, followed by an interventional part. All 72 itch patients were able to match their itchy sensation with a color: In 68 patients (94.4%) this "pruritic" basic color was red. Likewise, all patients were able to define a subjective "antipruritic" color: The leading basic color choice was blue (31/72, 43.0%) followed by green (21/72, 29.1%), yellow (7/72,9.7%) and others. The impairment of the itch-related quality of life (as measured by the ItchyQoL) correlated with the brightness and saturation of the pruritic and antipruritic colors. Ten patients were visually exposed to their subjective antipruritic and pruritic color during 10 minutes resulting in a significant decrease and increase of itch intensity compared to baseline (5.1 ± 1.52 vs. 2.8 ± 1.47 [0-10 Numerical Rating Scale, NRS], p=0.0004 and 4.9 ± 1.66 vs. 6.8± 2.09 NRS, p=0.0009). These results indicate that itch can be modified by color viewing and colors matter when treating itch patients. However, further investigations are required to elucidate the therapeutic potential of colors in itch patients., (© 2020 Wiley Periodicals LLC.)

Background: Previous studies exploring the impact of atopic dermatitis (AD) in children focused on factors associated with parental quality of life at one point in time., Objective: To examine factors associated with change of quality of life among parents of children affected with AD., Methods: The study cohort comprised 98 parent-children pairs treated for AD at the Clinic of Dermatovenereology; however, 18 parents (18.4%) were lost to follow-up after 1 year. Children were assessed with SCORing Atopic Dermatitis Index (SCORAD) and Children Dermatology Life Quality Index (CDLQI) or the Infants' Dermatitis Quality of Life Index (IDQOL), depending on their age. Parents filled in socio-demographic questionnaire and Dermatitis Family Impact Questionnaire (DFI). After 1 year, both children and parents were reassessed using the same AD-related battery of questionnaires., Results: After follow-up, a significant improvement in the average total DFI score was observed, especially for domains of fatigue/exhaustion, emotional distress and impact of helping in child treatment. Lower baseline SCORAD, greater improvement of SCORAD over follow-up, better CDLQI/IDQOL at baseline, greater improvement in CDLQI/IDQOL over follow-up, not having asthma and having older child with AD were associated with better parental quality of life after 1 year of follow-up. Parental higher education level, shorter AD duration, better baseline SCORAD and greater improvement in CDLQI/IDQOL over follow-up were associated with greater improvement in parental life quality over 1 year of follow-up., Conclusion: Contributors to parental quality of life after 1 year included clinical features of AD and child's comorbidity (asthma), but also the perception of child's quality of life and its improvement., (© 2019 European Academy of Dermatology and Venereology.)

Objective: To evaluate long-term global and site-specific health-related quality of life (HRQoL) in patients treated for sinonasal and nasopharyngeal malignancies., Study Design: Cross-sectional., Methods: One hundred fourteen patients with sinonasal and nasopharyngeal malignancies received surgery, radiation, systemic chemotherapy, or a combination thereof, with curative intent. Validated global ([EuroQol-5D] Visual Analogue Scale [EQ-5D VAS]) and disease-specific instruments (MD Anderson Symptom Inventory-Head and Neck [MDASI-HN], Anterior Skull Base Questionnaire [ASBQ]) were administered to patients who were both free of disease and had completed treatment at least 12 months previously. Associations between instruments, instrument domains, and specific clinical parameters were analyzed., Results: The median age was 55 years. The mean EQ-5D VAS, MDASI-22 composite score, and ASBQ score were 74 (standard deviation [SD] 21), 48 (SD 36), and 130 (SD 27), respectively. The most frequently reported high-severity items in MDASI-HN were dry mouth and difficulty tasting food. The most frequently reported high-severity items in ASBQ were difficulty with smell and nasal secretions. Advanced Tumor (T) classification was associated with worse overall ASBQ sum score (P = 0.02). ASBQ performance at home and MDASI-HN drowsy symptom items independently predicted worse global HRQoL as measured by the EQ-5D VAS (P < 0.001)., Conclusion: Global HRQoL for survivors of sinonasal and nasopharyngeal malignancies after multimodality treatment approximates that of the U.S. population for the same age group. ASBQ and MDASI-HN correlate well with global HRQoL outcomes as measured by EQ-5D VAS. MDASI-HN and ASBQ elicited unique symptoms, highlighting the complex symptom burden experienced by these patients. Further studies should identify patients predisposed to reduced long-term QOL., Level of Evidence: 3 Laryngoscope, 130:86-93, 2020., (© 2019 The American Laryngological, Rhinological and Otological Society, Inc.)

Background: Chronic rhinosinusitis with nasal polyposis (CRSwNP) negatively affects health-related quality of life (HRQoL). In a previously reported randomized clinical trial (NCT01920893), addition of dupilumab to mometasone furoate in patients with CRSwNP refractory to intranasal corticosteroids (INCS) significantly improved endoscopic, radiographic, and clinical endpoints and patient-reported outcomes. The objective of this analysis was to examine the impact of dupilumab treatment on HRQoL and productivity using secondary outcome data from this trial., Methods: Following a 4-week mometasone furoate nasal spray run-in, patients were randomized to commence subcutaneous dupilumab (600 mg loading dose, then 300 mg once weekly for 15 weeks [n = 30], or matched placebo [n = 30]). Outcomes included scores on the CRS disease severity visual analog scale (VAS), 22-item Sino-Nasal Outcome Test (SNOT-22), 5-dimension EuroQoL (EQ-5D) general health status VAS, and 36-item Short-Form Health Survey (SF-36) for HRQoL and nasal polyp-related healthcare resource use questionnaires., Results: Following 16 weeks of treatment, the proportion of patients with moderate-to-severe CRSwNP (VAS > 3-10) decreased from 86.2% to 21.4% with dupilumab and 88.0% to 84.2% with placebo. Dupilumab (vs placebo) resulted in significantly greater improvement in HRQoL, based on SNOT-22, SF-36, and EQ-5D VAS scores. The dupilumab group had a significantly lower adjusted annualized mean number of sick leave days (0.09, vs 4.18 with placebo, P = .015) and significantly greater improvement (vs placebo) in the SNOT-22 item "reduced productivity.", Conclusions: In adults with CRSwNP refractory to treatment with INCS alone, the addition of dupilumab reduced disease severity, significantly improved HRQoL, and improved productivity., (© 2019 EAACI and John Wiley and Sons A/S. Published by John Wiley and Sons Ltd.)

The article presents abstracts on the American Psychosocial Oncology Society's (APOS) 9th Annual Conference which include cancer survivors' quality of life, national policy changes for cancer survivors and substance use in cancer survivors.

The White Paper on Chinese population policy, entitled "Family Planning in China," was issued by the Chinese Information Office of the State Council on August 23, 1995. The population problem is an important question that touches upon the survival and development of the Chinese nation, the success or failure of China's modernization drive as well as the coordinated and sustained development between the population on one hand and the economy, society, resources and environment on the other. It is a natural choice that the Chinese government has made to implement family planning, control population growth and improve the life quality of the population a basic state policy on the basis of a wish to make the state strong and powerful, the nation prosperous and the people happy. In the 1960s, the country's population entered its second peak birth period. From 1962 to 1972, the annual number of births in China averaged 26.69 million, totaling 300 million. In the practice of carrying out family planning programme, whilst persistently proceeding from its reality and taking into full account and observing principles and regulations concerning population and family planning formulated by international institutions and organizations, the Chinese government has gradually set up guiding principles, policies, measures and methods that reflect the basic interests and various rights and interests of the people and has continuously improved these as the actual situations change, so as to better safeguard the right to subsistence and development of the Chinese region.

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

One mode of online retrieval in Scisearch or Social Scisearch involves entering pairs of authors' names believed to be jointly cited by subsequent writers and retrieving papers in which cocitations occur. Six pairs were formed with the names of four authors prominent in the social indicators movement (Bauer, Duncan, Land, and Sheldon). Documents by the four were not specified. ft was thought that the pair Duncan and Land would retrieve papers in which indicator-type data would be integrated with path-analytic causal modeling. All other pairs seemed likely to retrieve a "general social indicators" literature. The 298 retrieved papers confirmed expectations. It was found that 121 papers generally cited social indicators (SI) documents by the input authors and frequently had SI language in their titles. Other signs of content also identified them as papers of the SI movement. The 177 papers retrieved on Duncan and Land generally cited causal modeling documents by the input pair and were path-analytic in nature. As expected, they were relatively "harder" than the first group of papers, although the two groups are akin and are formally linked through citations in certain papers. An additional result is that papers citing at least three of the input authors tend to be overviews of the SI movement. [ABSTRACT FROM AUTHOR]

Our objective was to test a theoretical model that explains quality of life as a function of the intrusiveness of illness encroaching on the different domains of one’s life. The intrusiveness of illness is explained not only by disease and treatment related factors, but also by one’s psychological and social resources (Devins, 1994). To investigate this issue, a sample of 336 women aged 50 and under, recently diagnosed with breast cancer were interviewed in their homes. Consistent with Devins’ model, intrusiveness of illness mediated the effect of disease and treatment factors on quality of life. Contrary to his model, some treatment factors also had direct effects while social and psychological factors had only direct effects on quality of life. Neither time post-diagnosis nor type of treatment affected the psychological component of quality of life. © 1998 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Background: The nose and the bronchi belong, in anatomical and physiopathological terms, to the concept of united airways. Associations between upper and lower airways diseases have been demonstrated in allergic rhinitis and asthma, nasal polyposis (NP) and asthma, chronic rhinosinusitis (CRS) and chronic obstructive pulmonary disease, and more recently CRS/NP and bronchiectasis (BQ)., Objective: To evaluate the impact of CRS on quality of life (QoL) of patients with BQ, and to correlate these findings with the pulmonary status, nasal symptoms, and general health status., Methods: In a prospective study, patients with BQ (n = 80) were evaluated for CRS and NP using EP(3)OS criteria, and severity of BQ using chest high resolution computed tomography (HRCT)-scan. Quality of life was assessed in all patients by using specific [Sinonasal Outcome Test-20 (SNOT-20), St George Respiratory Questionnaire (SGRQ)], and generic (Short Form-36; SF-36) questionnaires., Results: Using SNOT-20, patients with CRS had worse QoL (2.1 +/- 0.1; P < 0.001) than patients without CRS (0.4 +/- 0.06). Using SGRQ total score, patients with CRS had worse QoL (43.7 +/- 2.2; P < 0.001) than patients without CRS (24.7 +/- 2.5). Using SF-36, patients with CRS had worse QoL, both in the physical summary (64 +/- 3.4; P < 0.05) and the mental summary (65.5 +/- 4.7; P < 0.05), than patients without CRS (physical summary [PS]: 76.2 +/- 3.3; mental summary [MS]: 78.3 +/- 5.3, respectively). Sinonasal Outcome Test-20 was correlated with SGRQ total score (r = 0.72; P < 0.01), and SF-36 physical summary (r = -0.63; P < 0.01). St George Respiratory Questionnaire was correlated with SF-36 on physical summary (r = -0.58; P < 0.05) and with forced expiratory volume in 1 s (r = -0.41; P < 0.05)., Conclusion: These results suggested that CRS, measured by both specific and generic questionnaires, has a considerable impact on the QoL of patients with BQ.

Introduction: This paper provides a critical reflection from both the researcher and public contributor (PC) perspective on the benefits and the learnings taken from involving PCs in research related to Parkinson's. Approach to Patient and Public Involvement (PPI): This paper reports on how PCs shaped the design and development of the PRIME‐UK research programme study materials through input into information leaflets, consent forms and other patient‐facing documents used across three studies within the PRIME‐UK research programme. The PRIME‐UK research programme is designed to improve the quality of life of people with Parkinson's and this project included three studies: a cross‐sectional study, a randomised control trial and a qualitative study. We captured these impacts using Public Involvement Impact Logs, which provide a framework allowing researchers and PCs to report on the learnings, immediate outcomes and impacts from PPI. For this project, the impact logs enabled us to provide reflections from PCs and researchers on the process of involving 'the public' in Parkinson's research. Findings: This paper builds on existing evidence of the range of benefits and challenges that emerge from working with patients and the public in Parkinson's research; this includes reflecting on the changes made to the study materials and benefits for the people involved. Four themes emerged from the reflections that were common to the researchers and PCs; these were the importance of providing a supportive environment; recognition of the benefit of the evaluation of the impact of PPI; acknowledgement that engagement of PPI can make a positive difference to the research process and that timely communication and the use of face‐to‐face communication, where available, is key. Furthermore, we demonstrate how impact logs provide a useful and straightforward tool for evaluating public involvement practices and supporting the feedback process. Conclusion: We offer key recommendations for involving patients and the public in Parkinson's research and suggest approaches that could be implemented to capture the impacts of public involvement. Public Contribution: Public contributors (PCs) were involved in the design and development of the participant information leaflets, consent forms and other patient‐facing documents used for studies within the PRIME‐UK research programme. In addition, PCs evaluated their involvement using impact logs and co‐authored this paper. [ABSTRACT FROM AUTHOR]

Accessible summary: The papers this time are all about the well‐being of people with learning disabilities.Some papers are about emotional well‐being, such as feeling secure, dealing with stress and anger, coping when someone dies, having a good life and planning for death.Some papers are about physical well‐being, particularly keeping healthy and what some medicines can do to us. One paper is about having the money needed to keep well and live a good life.There is now an easy read guide to what the journal is about and how to judge papers for the journal. You can follow us on Twitter too, @BJLD_Wiley. [ABSTRACT FROM AUTHOR]

Objectives: DETERMIND (DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their carers) is designed to address fundamental, and, as yet unanswered questions about inequalities, outcomes and costs following diagnosis with dementia. These answers are needed to improve the quality of care and equity of access to care, and therefore the quality of life, of people with dementia and their carers.Method: DETERMIND is a programme of research consisting of seven complementary workstreams (WS) exploring various components that may result in unequal dementia care: WS1: Recruitment and follow-up of the DETERMIND cohort-900 people with dementia and their carers from three geographically and socially diverse sites within six months following diagnosis, and follow them up for three years. WS2: Investigation of the extent of inequalities in access to dementia care. WS3: Relationship between use and costs of services and outcomes. WS4: Experiences of self-funders of care. WS5: Decision-making processes for people with dementia and carers. WS6: Effect of diagnostic stage and services on outcomes. WS7: Theory of Change informed strategy and actions for applying the research findings.Outcomes: During the life of the programme, analysing baseline results and then follow-up of the DETERMIND cohort over 3 years, we will establish evidence on current services and practice. DETERMIND will deliver novel, detailed data on inequalities in dementia care and what drives positive and negative outcomes and costs for people with dementia and carers, and identify factors that help or hinder living well with dementia. [ABSTRACT FROM AUTHOR]

Accessible Summary: Many of the papers this time are all about the relationships of people with learning disabilities. This may be loving or sexual relationships, relationships with staff, research, sport or friends.This issue has the first In Response article. Here people with learning disabilities share their response to one of the papers in the issue. Everyone involved learned greatly from the process.Some of the papers are based on inclusive research – where people with learning disabilities were also researchers – and many include the experiences of people with learning disabilities.The papers highlight how loneliness can be a problem. Two papers show the challenges for people forming relationships in their new settings if they have come out from institutional care.Papers in this issue show the importance of open honest communication such as when talking about planning for the end of life. The final paper shows how staff need to be compassionate in their care roles. [ABSTRACT FROM AUTHOR]

Objectives: The aim of the present study was to follow the daily course of patients with olfactory dysfunction and healthy controls and to assess (i) how many times a day, (ii) at which time, and (iii) in which aspect of daily life participants are conscious about their sense of smell. Methods: In this longitudinal study, 49 patients with smell loss and 30 healthy participants were enrolled. Olfactory function was assessed using the Sniffin' Sticks. All participants received paper diaries designed for a 14-day period, featuring 12 rows representing 12 daily hours and six columns for various daily life aspects. They were instructed to mark their awareness of smell by indicating the relevant row and column in the diary. Following the return of the diaries, a second olfactory test was conducted within the patient group. Results: On average, patients were consciously aware of their sense of smell around 8 times daily, while healthy participants noted it about 6.5 times a day. Both groups primarily focused on their sense of smell during activities related to "eating," followed by considerations in "social life" and "personal hygiene." Interestingly, distinct patterns emerged: patients peaked in awareness at 8 a.m. and 7 p.m., whereas healthy individuals showed peaks at 6 a.m., 12 p.m., and 7 p.m. Despite regular diary use, we observed no improvement in patients' olfactory function or related quality of life. Conclusion: The olfactory diary is a valuable tool unveiling individual smell awareness patterns in patients with smell loss, aiding in counseling and patient management. [ABSTRACT FROM AUTHOR]

Background: In an Australian randomized controlled trial (RCT), two techniques for intrapartum fetal surveillance were compared: ST analysis (STan) as an adjunct to cardiotocography (CTG), compared with CTG alone. The aim was to determine whether CTG + STan could reduce emergency cesarean birth rates while maintaining or improving neonatal outcomes. Secondary aims were to compare clinical, economic, and psychosocial outcomes. The purpose of this paper was to present psychosocial outcomes from one cohort enrolled in the trial., Methods: The study was conducted at one tertiary referral hospital. Participants who had taken part in the trial from the outset were invited to complete a questionnaire between March 2018 and January 2020, approximately 8 weeks after giving birth. Outcomes included depression, psychological distress, health-related quality of life, and infant feeding practices. Analysis was by intention to treat., Results: N = 207/527 participants completed the questionnaire (n = 113, STan; n = 94, CTG alone). Overall, no statistically significant or clinically meaningful differences were found in the two groups for symptoms of depression, psychological distress, quality of life, or infant feeding. A statistically significant difference was observed for the subscale of pain-discomfort, where scores were higher on average in the CTG alone arm relative to that in the CTG + STan arm., Conclusions: Although STan as an adjunct to CTG constitutes a different clinical technology from CTG alone, both monitoring types appeared to produce similar results in terms of postnatal psychosocial outcomes for women. Findings from this study provide service users and staff with a comprehensive assessment of STan that can be used to make evidence-informed decisions about monitoring options should STan become more widely available., (© 2024 The Authors. Birth published by Wiley Periodicals LLC.)

Traditionally, the main indication for cardiopulmonary exercise testing (CPET) in heart failure (HF) was for the selection of candidates to heart transplantation: CPET was mainly performed in middle-aged male patients with HF and reduced left ventricular ejection fraction. Today, CPET is used in broader patients' populations, including women, elderly, patients with co-morbidities, those with preserved ejection fraction, or left ventricular assistance device recipients, i.e. individuals with different responses to incremental exercise and markedly different prognosis. Moreover, the diagnostic and prognostic utility of symptom-limited CPET parameters derived from submaximal tests is more and more considered, since many patients are unable to achieve maximal aerobic power. Repeated tests are also being used for risk stratification and evaluation of intervention, so that these data are now available. Finally, patients, physicians and healthcare decision makers are increasingly considering how treatments might impact morbidity and quality of life rather than focusing more exclusively on hard endpoints (such as mortality) as was often the case in the past. Innovative prognostic flowcharts, with CPET at their core, that help optimize risk stratification and the selection of management options in HF patients, have been developed. [ABSTRACT FROM AUTHOR]

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

Aim: To gain a greater understanding of how compression therapy affects quality of life, this systematic review appraised existing published studies measuring the impact of compression therapy on health quality of life (HRQoL), and pain, among people with venous leg ulcers (VLU). Method: Five databases were searched, and two authors extracted data and appraised the quality of selected papers using the RevMan risk of bias tool. Due to heterogeneity in the types of compression and instruments used to evaluate HRQoL, meta‐analysis was not appropriate; thus, a narrative synthesis of findings was undertaken. Results: Ten studies were included, 9 RCTs and one before‐after study. The studies employed nine different HRQoL tools to measure the impact of a variety of compression therapy systems, with or without an additional exercise programme, versus other compression systems or usual care, and the results are mixed. With the use of the Cardiff Cardiff Wound Impact Schedule, the SF‐8 and the SF‐12, study authors found no differences in QoL scores between the study groups. This is similar to one study using QUALYs (Iglesias et al., 2004). Conversely, for studies using EuroQol‐5D, VEINES‐QOL, SF‐36 and CIVIQ‐20 differences in QoL scores between the study groups were noted, in favour of the study intervention groups. Two further studies using QUALYs found results that favoured a two‐layer cohesive compression bandage and the TLCCB group, respectively. Results for the five studies that assessed pain are also mixed, with one study finding no difference between study groups, one finding that pain increased over the study period and three studies finding that pain reduced in the intervention groups. All studies were assessed as being at risk of bias in one or more domains. Conclusion: Results were varied, reflecting uncertainty in determining the impact of compression therapy on quality of life and pain among people with a venous leg ulcer. The heterogeneity of the compression systems and the measures used to evaluate HRQoL make it a challenge to interpret the overall evidence. Further studies should strive for homogeneity in design, interventions and comparators to enhance both internal and external validity. [ABSTRACT FROM AUTHOR]

Scars are fibrous tissues that replace normal tissue during the wound healing process. Scarring can lead to low self‐esteem, social impairment, depression, anxiety, and other psychiatric and psychological distress, necessitating a comprehensive understanding of the latest perspectives, topical research, and directions in scarring‐mental health. This is a biblioshiny and VOSviewer based bibliometric analysis study. All data were obtained from the Web of Science, and a total of 664 articles from 2003 to 2022 met the criteria. The last 7 years have been a period of rapid growth in the field, with 2022 having the highest number of articles. The United States is the core country with the highest production and citation rate. The most cited literature was written in 2003 by Van Loey NE et al. Van Loey NE is the most prolific and influential author in this field. The top five popular keywords include "quality of life", "depression", "management", "anxiety", and "prevalence". The paper concludes that the current focus of scholars in the field is on the treatment of scars and that multidisciplinary treatment of such patients is worth exploring. These findings provide relevant researchers with the current state of research and possible future directions in this field. [ABSTRACT FROM AUTHOR]

Background and Objectives: Quality of life has become an increasingly important measurement in the substance use field. The main aim of the present study was to examine the relationships between non-medical use of prescription analgesics and sedatives and poor quality of life in the general population., Methods: Data were drawn from a Swedish national household survey conducted in 2008-2009. A stratified sample of 58,000 individuals aged 15-64 was randomly selected, with a response rate of 38.3% (n = 22,095). We examined the relationships between non-medical prescription drug use and quality of life in a logistic regression analysis, controlling for other substance use and sociodemographic variables., Results: In the final logistic regression model, both non-medical use of prescription analgesics and sedatives were independently associated with poor quality of life. Non-medical use of prescription sedatives was the strongest correlate of poor quality of life among the substance use variables., Discussion and Conclusions: The associations between non-medical prescription drug use and poor quality of life might imply a need to better identify and provide treatment for this group, especially individuals with non-medical prescription sedative use, which seems to be a particularly strong correlate of poor quality of life., Scientific Significance: Using a large, general population sample, the present paper is one of few to examine the relationships between non-medical prescription drug use and quality of life., (© American Academy of Addiction Psychiatry.)

Objective: Examine the literature on the experiences of living with removable dentures (complete or partial) to identify any gaps and provide a map for future research. Background: Increasing proportions of society are living partially dentate with some form of restoration, including removable dentures. Previous studies have reported on the location, materials and usage of these prostheses, along with effects on oral‐health‐related quality of life (OHRQoL). However, less is known about experiences with removable dentures from a patient‐centred perspective. Methods: A scoping review of the qualitative literature was undertaken using the framework of Arksey and O'Malley, updated by Levac et al. Literature searches were carried out using Medline and Web of Science. Papers were screened by title and abstract using inclusion and exclusion criteria. Remaining papers were read in full and excluded if they did not meet the required criteria. Nine papers were included in the final review. Findings: Key themes from these papers were: impact of tooth loss and living without teeth, and its impacts in relation to social position, appearance, confidence and function (chewing and speaking); social norms and tooth loss, including attitudes to tooth retention and treatment costs, and changes in intergenerational norms towards dentures; expectations of treatment, including patients being more involved in decision making, viewing the denture as a "gift" and dentures helping to achieve "an ideal"; living with a removable denture (complete or partial), including patient preparedness for a denture, adaptation and impacts on activities and participation; and the dentist‐patient relationship, including issues with information and communication, and differing priorities between patients and dentists. Conclusion: Little qualitative research exists on experiences of living with a removable denture. Existing literature demonstrates the importance of dispersed activities in differing social, spatial and temporal contexts when wearing removable dentures. Focusing on processes of positive adaptation to dentures and OHRQoL, rather than deficits, is also required to fully understand patients' experiences. Additionally, more complex technological advances may not always be in the best interest of every patient. [ABSTRACT FROM AUTHOR]

Background: A lifelong gluten‐free (GF) diet to manage coeliac disease is recognised to be challenging. This paper comprises two studies: study one aimed to report the opinions of adults with coeliac disease on review provision and explore factors influencing dietary adherence. Study two aimed to report dietetic provision for adults with coeliac disease. Methods: A cross‐sectional online survey was completed by 722 adults with coeliac disease, including validated dietary adherence, health literacy and quality‐of‐life questionnaires. An online and paper survey designed to capture the provision of dietetic services to adults with coeliac disease was completed by 88 dietetic departments within the United Kingdom. Results: Only 26% of adults with coeliac disease were offered annual reviews. In contrast, 85% considered reviews important, with 62% preferring dietetic provision. Those who considered reviews important had lower health literacy, greater dietary burden, poorer GF dietary adherence and lower GF food knowledge (all p < 0.05) compared with those who did not consider reviews important. GF dietary adherence was associated with health literacy, self‐regulatory behaviours, dietary burden and GF food knowledge; 53% agreed with the 'cost of GF food restricts what I eat'; they had poorer GF dietary adherence compared with those who disagreed (p < 0.001). More than 72% of dietetic coeliac review provision provided content on improving access to GF foods and eating out of the home. Conclusions: A subpopulation of adults with coeliac disease have a greater need for support and guidance, which supports the viewpoint that limited resources should be targeted towards patients with the most need for support to enable successful disease management. Key points: The majority of adults with coeliac disease were not receiving healthcare reviews for coeliac disease, whereas 85% would like to have reviews.Adults living with coeliac disease who had lower health literacy, poorer gluten‐free (GF) food knowledge and poorer GF dietary adherence score rated healthcare reviews as important.A varied provision of dietetic services for coeliac disease reviews was evident across the United Kingdom. [ABSTRACT FROM AUTHOR]

Aim: To describe the life situation of spouses having a partner with heart disease and adolescents living at home. Design: Qualitative inductive design. Method: Participants (n = 22) were included from three Scandinavian countries. Semi‐structured interviews were analysed using thematic analysis with an inductive and latent approach. Results: Three themes were derived. 'Being in spousal and parental role transition' described how daily life had been affected and parental responsibilities had been doubled due to their partner's heart disease. 'Living with unpredictability and insecurity' included how the unpredictable illness trajectory caused worries and affected the well‐being of the family. 'Managing a challenging life situation' highlights how spouses coped with their partners' heart disease and adapted to a new life situation. Conclusion: Young spouses' life situation was greatly affected by their partner's heart disease, resulting in increased responsibilities and double parenthood. Having a positive attitude and mindset towards life was used as a strategy to cope with the changed life situation and find a new way of life. Implications for the Profession and/or Patient Care: All family members are affected by heart disease. Spouses needed additional professional support and guidance on how to involve the children when a parent is ill. Impacts: This study highlights how young spouses, with adolescents living at home, experience their life situation.The life situation is unpredictable due to the partner's heart disease, as they must handle both caring for their partner and taking on double parenthood.Research involving family members can improve person‐ and family‐centred care and treatment outcomes in health care and society. Reporting Method: COREQ checklist was used preparing the manuscript. Patient or Public Contribution: Data collection included interviews with spouse. What Does This Paper Contribute to the Wider Global Clinical Community?: By highlighting the spouses changed life situation due to heart disease and the importance of including them in health care. [ABSTRACT FROM AUTHOR]

Background: Merkel cell carcinoma is a rare skin cancer associated with poor survival. Based on a previous Phase II trial of adults with advanced Merkel cell carcinoma by Kim and colleagues (2022), there is now a strong rationale for combination therapy (i.e., nivolumab and ipilimumab) to become a treatment option for patients with advanced Merkel cell carcinoma. The goal of this paper was to report on the secondary outcome of quality of life (QOL) among patients on this trial. Methods: Patients receiving combined nivolumab and ipilimumab, with or without stereotactic body radiation therapy (SBRT), completed the European Organisation for Research and Treatment of Cancer (EORTC) QLQ‐C30 prior to starting treatment and every 2 weeks thereafter. Changes in QOL during treatment and post‐treatment were evaluated using piecewise random‐effects mixed models. Exploratory analyses compared changes in QOL between study arms. The original trial was registered with ClinicalTrials.gov (NCT03071406). Results: Study participants (n = 50) reported no changes in overall QOL (ps > 0.05), but emotional functioning improved during treatment (p = 0.01). Cognitive and social functioning worsened post‐treatment (ps < 0.01). In general, patients treated with combination therapy only (n = 25) reported no change in QOL over time, whereas patients also treated with SBRT (n = 25) consistently demonstrated worsening QOL post‐treatment. Conclusion: QOL is generally preserved in patients treated with combination therapy, but the addition of SBRT may worsen QOL. Combined with clinical efficacy data published previously, results support the use of combination therapy with nivolumab and ipilimumab as a treatment option for patients with advanced Merkel cell carcinoma. [ABSTRACT FROM AUTHOR]

Background: People with behavioural variant frontotemporal dementia, Lewy body dementia, posterior cortical atrophy and young onset Alzheimer's disease may experience language and communication difficulties. However, the role of speech and language interventions for people with these non‐language led dementias has received little attention. Aims: This study aimed to explore the experiences and perspectives of people living with these conditions, and their families, regarding their language and communication difficulties and how speech and language therapy could address these needs. Methods: This study employed a qualitative design to explore the experiences of people living with or caring for somebody with behavioural variant frontotemporal dementia, Lewy body dementia, posterior cortical atrophy or young onset Alzheimer's disease, and to understand their opinions about speech and language therapy. Participants were recruited from a support service connected to a dementia clinic to attend one of five focus group meetings. Videorecorded focus groups and interviews were transcribed, and reflexive thematic analysis was used to analyse data from people affected by each type of dementia. Results: A total of 25 participants were recruited to the study, with representation across the different forms of non‐language led dementias. The four main themes identified were: (1) communication difficulties as a key difficulty, (2) loss and loneliness, (3) speech and language therapy, and (4) the role of the caregiver. Sixteen subthemes were also identified which highlighted individual issues across disease types. Discussion: Although all the forms of dementia studied here are not considered to be language‐led, people with these conditions and/or their care partners identified speech, language and communication as common challenges. These communication difficulties were reported to have a negative impact on their social participation and mental health and participants felt speech and language interventions could help. There is a need for research exploring speech and language interventions developed for and with people with non‐language led dementias and their care partners, to ensure they meet the needs of the people they are designed for. WHAT THIS PAPER ADDS: What is already known on the subject: People with primary progressive aphasia present with speech, language and communication difficulties, and several speech and language interventions have been developed to meet the needs of this population. However, people with non‐language led dementias may also experience speech, language and communication difficulties, and little is known about interventions that may address these difficulties. What this paper adds to existing knowledge: People living with or caring for somebody with behavioural variant frontotemporal dementia, Lewy body dementia, posterior cortical atrophy and young onset Alzheimer's disease report experiencing speech, language and communication difficulties that impact on the person with dementia's social participation and mood. Participants in this study also shared their opinions about how speech and language interventions could help, from the earliest stages of the disease. What are the potential or actual clinical implications of this work?: Speech and language therapists need to address the individual speech, language and communication needs of people with dementias, even those that are not thought to be language‐led. Current speech and language therapy service provision does not meet the needs of people with non‐language led dementias and further research is required to develop interventions and services to meet these needs. [ABSTRACT FROM AUTHOR]

Background: Endovascular clot retrieval (ECR) is known to reduce global disability at 3 months post stroke however limited research exists regarding the trajectory of specific clinical impairments including language, swallowing and cognitive deficits between onset and 3 months. Aims: To assess language, swallowing, and cognitive performance following ECR and explore whether impairment severity is correlated with modified Thrombolysis in Cerebral Infarction score (mTICI), stroke severity or quality of life (QoL). Methods: Assessment was completed within 7 days (T1), 1 month (T2) and 3 months (T3) post‐stroke. Performance was measured with the Functional Oral Intake Scale (FOIS), Repeatable Battery for Assessment of Neuropsychological Status (RBANS), Trail Making Test (TMT A and B) and Brixton Spatial Awareness Test. The Western Aphasia Battery (WAB) was used for left hemisphere stroke. QoL was measured with the Stroke and Aphasia Quality of Life Scale. Results: Twenty‐five participants (median 72 years; 64% male) were prospectively recruited following ECR. High reperfusion success (68% mTICI 3) and low stroke severity post ECR (median 24 h NIHSS = 3, IQR 7–18) were noted. At T1, 10 participants presented with aphasia, eight required a modified diet and 20 had impaired cognition. At T3 all had recovered to a normal oral diet, 39% had persistent cognitive impairment and 45% of patients with left hemisphere stroke remained aphasic. Performance on the WAB, FOIS, RBANS and TMT changed significantly over time (all p < 0.05). The severity score at T1 for all measures, excluding TMT B and Brixton, was significantly correlated with 24 h NIHSS. WAB scores at T3 were correlated with QoL (r = 0.618; p = 0.043). Conclusion: This exploratory study found the longitudinal performance of language, swallowing and cognition significantly improved over time and severity in the first‐week post‐ECR was correlated with 24 h NIHSS rather than the degree of reperfusion. WHAT THIS PAPER ADDS: What is already known on the subject: Randomised control trials have demonstrated the benefit of ECR in patients with ischemic stroke using global measures of disability and function. Limited research exists regarding the trajectory of specific clinical impairments including language, swallowing and cognitive deficits. There is also a reliance on screening assessments and a lack of consideration of the influence of co‐occurring impairments. What this paper adds to existing knowledge: This prospective study is amongst the first to explore the longitudinal trajectory of language, swallowing and cognitive impairment using a standardised assessment battery. Twenty‐four‐hour NIHSS was significantly correlated with language, swallowing, global cognition and some measures of executive function. Language performance post ECR was correlated with domain‐specific cognitive assessment of attention, immediate memory and delayed memory, which differed from swallowing performance post ECR that correlated with measures of executive function. What are the potential or actual clinical implications of this work?: It is important for speech‐language pathologists and the wider medical team to monitor language, swallowing and cognitive performance post ECR regardless of treatment success. Stroke severity at 24 h post‐ECR influences the severity of language, swallowing and cognitive impairments. [ABSTRACT FROM AUTHOR]

Background and Objectives: Evidence suggests telehealth in speech and language therapy can enhance access to care, cost‐effectiveness and satisfaction. However, little is known about use of telehealth in the United Kingdom. Moreover, many assessments/outcome measures for aphasia have been tested for face‐to‐face administration only, posing challenges to reliable use within the telehealth context. We explored the experiences and views of speech and language therapists (SLTs) working with people with aphasia on using telehealth to conduct assessments/outcome measures, perceived barriers and facilitators in telehealth, and their priorities for research in telehealth aphasia assessment. Method: We explored views of UK SLTs through an online cross‐sectional survey (2021) delivered through the Qualtrics platform. The survey covered three main areas: (i) participant demographics; (ii) experience of using telehealth and doing telehealth assessments with people with aphasia post‐stroke during the COVID‐19 pandemic; and (iii) plans for telehealth post‐pandemic. Response formats included yes/no, multiple choice, 5‐point Likert scales and open‐ended text responses. The survey was expected to take no more than 10 min to complete. Survey data were analysed through descriptive statistics and content analysis of open‐ended questions. Results: One hundred twenty‐four SLTs responded to the survey. The majority (>80%) used telehealth during the COVID‐19 pandemic and >90% planned to continue to use telehealth in the future. The most used platforms were Zoom, Microsoft Teams and Attend Anywhere. Access to internet and telehealth platforms, and practical problems (e.g., difficulties sharing resources online, limited functionality of telehealth platforms for assessment) were common barriers. Therapists highlighted that training, resources and materials that assist the administration of assessments were important. Most participants responded that there was a need for existing measures to be tested for administration via telehealth (n = 68, 70.8%). Participants overall felt there was a need for online interactive assessments, more online resources that have been trialled for use via telehealth, accessible formats for resources for people with aphasia and clear instructions for how people with aphasia can access resources. Conclusions: This study provides new insights into the current use of telehealth assessment with people with aphasia in the United Kingdom and directions for future research. Barriers and facilitators identified can support the implementation of telehealth assessment in SLT services. WHAT THIS PAPER ADDS: What is already known on the subject: The use of telehealth in speech and language therapy has advantages in terms of access to care, cost‐effectiveness and satisfaction with care. However, little is known about the use of telehealth in aphasia rehabilitation in the United Kingdom, especially in the area of assessment and outcome measurement. What this paper adds to existing knowledge: This study identified that the majority (>80%) of aphasia therapists used telehealth during the COVID‐19 pandemic and >90% planned to continue to use telehealth in the future. A need was identified for existing measures to be tested for administration via telehealth and for training, resources (e.g., online interactive assessments) and materials (e.g., accessible formats for people with aphasia). What are the potential or actual clinical implications of this work?: To facilitate the successful implementation of telehealth assessment, there is a need for measures validated for use via telehealth and more online resources that have been trialled for use via telehealth. [ABSTRACT FROM AUTHOR]

Presents the remarks by L. Scott Chavers, one of three co-authors recognized by the "Journal of Public Health Dentistry" of the American Association of Public Health Dentistry for their paper titled "Racial and Socioeconomic Disparities in Oral Disadvantage, a Measure of Oral Health-related Quality of Life: 24-month Incidence" with the Best Paper of the Year 2002. Appreciation for Gregg Gilbert's vision for the Florida Dental Care Study.

This paper on a strengths‐based approach (SBA) to practice is based on empirical research with stakeholders involved in an intensive support programme for young people at risk and their parents in Ireland. The Youth Advocate Programme (YAP) model provides wraparound support to respond to their needs by focusing on their competencies and their coping skills and building networks of community‐based supports. The model includes parents or carers in the suite of support offered by advocates. An SBA to practice has been discussed for some time in academic literature and practice guidance. However, it tends to be considered primarily in relation to social work practice, and there is ongoing ambiguity as to what it actually involves in day‐to‐day engagement with individual family members. Insightful, rich accounts of SBAs as part of routine practice provided by young people, parents and practitioners form the basis to this paper and detail how these approaches support the development of hope‐inspiring relationships and promote positive change. Relevant literature and research situates the debate on the experience of using SBA, the wider challenges faced by families, the impact of SBA in practice on those receiving the support service and its potential for use in the wider continuum of children and family services. [ABSTRACT FROM AUTHOR]

Background: As the prevalence of dementia increases, the need for appropriately trained and skilled care teams also increases. Staff attitudes towards people living with dementia have a significant impact on caregiving behaviours and staff and resident outcomes. Training within care settings is a potential way of improving staff attitudes towards residents in their care. Objectives: This review aimed to (i) assess the effectiveness of psychosocial training in improving care staff attitudes towards dementia; and (ii) examine the content and focus of training. Method: The review was conducted following PRISMA guidance and the protocol was registered on PROSPERO prior to conducting the review. A comprehensive search of peer‐reviewed literature was undertaken using CINAHL, Medline and PsycINFO from inception to March 2021. All papers were evaluated using a quality appraisal tool. Results: Ten studies met inclusion criteria and were of variable quality. However, six studies found significant improvements in staff attitudes towards dementia following staff training. The studies varied in terms of training focus and included behavioural, communication and cognitive‐based approaches. Conclusions: Staff training could be an effective method of improving staff attitudes towards dementia in care settings. Further research adopting high‐quality randomised controlled designs to further explore staff attitudes following psychosocial training would make a valuable contribution to the literature base. [ABSTRACT FROM AUTHOR]