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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]

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]

Background: Acute and late toxicities in patients treated with (chemo)radiotherapy for head and neck cancer (HNC) is common and can negatively impact quality of life and performance. Performance status instruments measure the functional ability to perform daily life activities and are important tools in the oncologic population. Aims: Since Dutch performance status scales for the HNC population are lacking, we conducted this study to translate the Performance Status Scale for Head and Neck Cancer Patients (PSS‐HN) into Dutch (D‐PSS‐HN) and to validate this version. Methods & Procedures: The D‐PSS‐HN was translated into Dutch according to the internationally described cross‐cultural adaptation process. It was administered to HNC patients and together with the Functional Oral Intake Scale completed by a speech and language pathologist at five different time points during the first 5 weeks of (chemo)radiotherapy. Patients were asked each time to complete the Functional Assessment of Cancer Therapy and the Swallowing Quality of Life Questionnaire. Pearson correlation coefficients were used to calculate convergent and discriminant validity and the evolution of D‐PSS‐HN scores was assessed by means of linear mixed models. Outcomes & Results: A total of 35 patients were recruited and > 98% of the clinician‐rated scales were completed. Convergent and discriminant validity were demonstrated, with all correlations rs between 0.467 and 0.819, and between 0.132 and 0.256, respectively. The subscales of the D‐PSS‐HN are sensitive to detect changes through time. Conclusion & Implications: The D‐PSS‐HN is a valid and reliable instrument to assess performance status in patients with HNC treated with (chemo)radiotherapy. It is a useful tool to measure HNC patients' current diet level and functional abilities to perform daily life activities. WHAT THIS PAPER ADDS: What is already known on the subject: Acute and late toxicities in patients treated with (chemo)radiotherapy for HNC are common and can negatively impact quality of life and performance. Performance status instruments measure the functional ability to perform daily life activities and are important tools in the oncologic population. However, Dutch performance status scales for the HNC population are lacking. Therefore, we translated the Performance Status Scale for Head and Neck Cancer Patients (PSS‐HN) into Dutch (D‐PSS‐HN) and validated this version. What this paper adds to existing knowledge: We translated the PSS‐HN and demonstrated its convergent and discriminant validity. The subscales of the D‐PSS‐HN are sensitive to detect changes through time. What are the potential or actual clinical implications of this work?: The D‐PSS‐HN is a useful tool to measure HNC patients' functional abilities to perform daily life activities. The tool can easily be used in clinical settings: since data collection duration is very short, this facilitates clinical (and research‐related) implementation of the scale. Patients' individual needs could be identified by using the D‐PSS‐HN, resulting in more appropriate approaches and (early) referrals if needed. Interdisciplinary communication could be facilitated. [ABSTRACT FROM AUTHOR]

Introduction: Participation in work and employment is a milestone of adulthood. People returning to work after burn injury may have physical, psychological, social, and environmental barriers to overcome in order to resume their pre‐injury employment. The aim of this paper is to evaluate qualitative findings regarding return‐to‐employment after burn injury. Methods: A qualitative synthesis was conducted based on the qualitative findings of an earlier mixed methods review. A pre‐determined scoping review protocol was used in the earlier review to search MEDLINE, CINAHL, Embase, PsycINFO, PubMed, Scopus, CCRCT, and CDSR databases between 2000 and Aug 2021. Any papers presenting qualitative data from previously employed adults with cutaneous burn injuries were included. Findings: A total of 20 papers with qualitative data on return‐to‐employment after burn injury were found. Only six included studies focused on return‐to‐employment outcomes and the remaining studies reporting on quality of life and life experiences after burn injury. Common themes included impairments that develop and change over time; occupational identity and meaning; temporal aspects of burn recovery; burn rehabilitation services and interventions; attitudes, knowledge and support of service providers; workplace environments supporting work re‐engagement after burn injury; usefulness of work accommodations; family and social supports, individuals attributes that influence re‐engaging in employment; and accepting and rebuilding. Conclusion: Resumption of work after burn injury is regarded as a key marker of recovery for working‐aged adults by burn survivors and burn care professionals. Support at transition points during the burn recovery process and peer‐led programmes were important. However, limited information currently exists regarding clinical practices, service gaps, and understanding of return‐to‐employment outcomes after burn injury. [ABSTRACT FROM AUTHOR]

Background: Communication difficulties are common in people with dementia, and often present from an early stage. However, direct treatment options for people with dementia that positively influence their daily communication are scarce. Aims: To evaluate the potential impact and feasibility of a personalized logopaedic intervention. Methods & Procedures: A total of 40 community‐dwelling persons with dementia and their caregivers were recruited. Five experienced speech and language therapists (SLTs) delivered the six‐session Com‐mens intervention at home. Com‐mens aims to improve positive communication between people with dementia and their primary caregivers and comprises five elements: interactive history‐taking, dynamic observational assessment, education about the consequences of dementia on communication, development and use of personalized communication tools, use motivational, and person‐centred strategies by the SLT. We conducted a single‐group mixed‐methods pilot study with five measurements: baseline, directly after intervention, and at 3, 6 and 9 months follow‐up. Semi‐structured interviews and questionnaires for Experienced Communication in Dementia, quality of life, psychological well‐being and caregiver burden were conducted. Process evaluation was performed by interviewing participants, drop‐outs, SLTs and other stakeholders. Outcomes & Results: A total of 32 dyads completed the intervention. Repeated measures analyses revealed no significant changes over time. In the interviews, participants reported a positive impact on their feelings, increased communication skills and better coping with the diagnosis. Participants would recommend the intervention to others. Facilitators were timely delivery, personalized content and adequate reimbursement. Barriers were unfamiliarity with Com‐mens among referrers, an overburdened caregiver or disrupted family relationships. Conclusions & Implications: This newly developed logopaedic intervention is feasible and has a perceived positive impact on both people with dementia and their caregivers, which is confirmed by a stable pattern over a period of 1 year. Future comparative studies are needed to test the effectiveness of personalized interventions in this patient population. What this paper adds: What is already known on the subject?: SLTs are experts in the field of communication, but even though communication problems are common between people with dementia and their caregivers, there is a lack of logopaedic guidelines and materials for the direct treatment for this population. Interventions that are available either focus on (professional) caregivers only or aim to enhance cognitive functioning and do not target on joined communication. What this paper adds to the existing knowledge?: A newly developed intervention called Com‐mens can be provided by trained SLTs and takes an average of six 1‐h sessions. The intervention is perceived to be valuable and feasible for people with dementia and their caregivers, by the participants themselves, as well as by healthcare professionals and other stakeholders. What are the potential or actual clinical implications of this work?: Dissemination of this intervention will give SLTs skills, tools and materials to provide meaningful care to home‐dwelling persons with dementia and their caregivers. Also, persons with dementia and their caregivers will receive education and materials that can help them increase their understanding of communication problems, enhance their communication skills and better cope with the communication problems that result from dementia. We consider the Com‐mens intervention to be a valuable addition to the field of speech language therapy and dementia. [ABSTRACT FROM AUTHOR]

Objective: This systematic review was performed to evaluate the range of outcome measures used in interventional trials for oral submucous fibrosis (OSF). Materials and Methods: PubMed, Scopus, and Cochrane databases were searched to identify randomized controlled trials (RCTs) published from 2004 to 2018 about OSF treatment. All the outcome measures and measurement methods mentioned in the trials were extracted and analyzed. Results: Out of 120 published papers, 12 RCTs that met the inclusion criteria were included. A total of 38 single outcome measures and 29 composite outcome measures were considered under four different outcome domains, of which clinical symptoms and clinical response were the most commonly used. The linear measurement of mouth opening (11 trials; 91.66%) and Visual Analogue Scale (10 trials, 83.33%) were the predominant measurement methods. Conclusions: This systematic review highlights the high heterogeneity in outcome measures in therapeutic RCTs of OSF. This lack of widely agreed standard outcome measures in OSF is a great concern as it prevents the comparison of studies and meta‐analyses to gather evidence. There is a dire need of establishing a core outcome set for reporting in the future clinical trials that may help facilitate treatment choice for OSF to improve life quality of patients. [ABSTRACT FROM AUTHOR]

Background The Glasgow Benefit Inventory ( GBI) is a validated, generic patient-recorded outcome measure widely used in otolaryngology to report change in quality of life post-intervention. Objectives of review To date, no systematic review has made (i) a quality assessment of reporting of Glasgow Benefit Inventory outcomes; (ii) a comparison between Glasgow Benefit Inventory outcomes for different interventions and objectives; (iii) an evaluation of subscales in describing the area of benefit; (iv) commented on its value in clinical practice and research. Type of review Systematic review. Search strategy 'Glasgow Benefit Inventory' and ' GBI' were used as keywords to search for published, unpublished and ongoing trials in PubMed, EMBASE, CINAHL and Google in addition to an ISI citation search for the original validating Glasgow Benefit Inventory paper between 1996 and January 2015. Evaluation method Papers were assessed for study type and quality graded by a predesigned scale, by two authors independently. Papers with sufficient quality Glasgow Benefit Inventory data were identified for statistical comparisons. Papers with <50% follow-up were excluded. Results A total of 118 eligible papers were identified for inclusion. A national audit paper ( n = 4325) showed that the Glasgow Benefit Inventory gave a range of scores across the specialty, being greater for surgical intervention than medical intervention or 'reassurance'. Fourteen papers compared one form of surgery versus another form of surgery. In all but one study, there was no difference between the Glasgow Benefit Inventory scores (or of any other outcome). The most likely reason was lack of power. Two papers took an epidemiological approach and used the Glasgow Benefit Inventory scores to predict benefit. One was for tonsillectomy where duration of sore throat episodes and days with fever were identified on multivariate analysis to predict benefit albeit the precision was low. However, the traditional factor of number of episodes of sore throat was not predictive. The other was surgery for chronic rhinosinusitis where those with polyps on univariate analysis had greater benefit than those without. Forty-three papers had a response rate of >50% and gave sufficient Glasgow Benefit Inventory total and subscales for meta-analysis. For five of the 11 operation categories (vestibular schwannoma, tonsillectomy, cochlear implant, middle ear implant and stapes surgery) that were most likely to have a single clear clinical objective, score data had low-to-moderate heterogeneity. The value in the Glasgow Benefit Inventory having both positive and negative scores was shown by an overall negative score for the management of vestibular schwannoma. The other six operations gave considerable heterogeneity with rhinoplasty and septoplasty giving the greatest percentages (98% and 99%) most likely because of the considerable variations in patient selection. The data from these operations should not be used for comparative purposes. Five papers also reported the number of patients that had no or negative benefit, a potentially a more clinically useful outcome to report. Glasgow Benefit Inventory subscores for tonsillectomy were significantly different from ear surgery suggesting different areas of benefit Conclusions The Glasgow Benefit Inventory has been shown to differentiate the benefit between surgical and medical otolaryngology interventions as well as 'reassurance'. Reporting benefit as percentages with negative, no and positive benefit would enable better comparisons between different interventions with varying objectives and pathology. This could also allow easier evaluation of factors that predict benefit. Meta-analysis data are now available for comparison purposes for vestibular schwannoma, tonsillectomy, cochlear implant, middle ear implant and stapes surgery. Fuller report of the Glasgow Benefit Inventory outcomes for non-surgical otolaryngology interventions is encouraged. [ABSTRACT FROM AUTHOR]

Aim: Position paper on endpoints of active periodontal therapy for designing treatment guidelines. The question was as follows: How are, for an individual patient, commonly applied periodontal probing measures—recorded after active periodontal therapy—related to (a) stability of clinical attachment level, (b) tooth survival, (c) need for re‐treatment or (d) oral health‐related quality of life. Methods: A literature search was conducted in Ovid MEDLINE(R) and Epub Ahead of Print, In‐Process & Other Non‐Indexed Citations and Daily <1946 to 07 June 2019>. Results: A total of 94 papers were retrieved. From the literature search, it was found that periodontitis patients with a low proportion of deep residual pockets after active periodontal therapy are more likely to have stability of clinical attachment level over a follow‐up time of ≥1 year. Other supporting literature confirms this finding and additionally reports, at the patient level, that probing pocket depths ≥6 mm and bleeding on probing scores ≥30% are risks for tooth loss. There is lack of evidence that periodontal probing measures after completion of active periodontal treatment are tangible to the patient. Conclusions: Based on literature and biological plausibility, it is reasonable to state that periodontitis patients with a low proportion of residual periodontal pockets and little inflammation are more likely to have stability of clinical attachment levels and less tooth loss over time. Guidelines for periodontal therapy should take into consideration (a) long‐term tangible patient outcomes, (b) that shallow pockets (≤4 mm) without bleeding on probing in patients with <30% bleeding sites are the best guarantee for the patient for stability of his/her periodontal attachment, (c) patient heterogeneity and patient changes in immune response over time, and (d) that treatment strategies include lifestyle changes of the patient. Long‐term large population‐based and practice‐based studies on the efficacy of periodontal therapies including both clinical and patient‐reported outcomes (PROs) need to be initiated, which include the understanding that periodontitis is a complex disease with variation of inflammatory responses due to environment, (epi)genetics, lifestyle and ageing. Involving people living with periodontitis as co‐researchers in the design of these studies would also help to improve their relevance. [ABSTRACT FROM AUTHOR]

Background: Intervention studies aimed to improve the written production of single words by persons with aphasia have yielded promising results and there is growing interest in interventions targeting text writing. The development of technical writing aids offers opportunities for persons with aphasia, and studies have shown that using them can have a positive impact on written output. Aims: The aim was to investigate what impact training to use a computerised spell checker had on text writing in persons with aphasia. Methods & Procedures: The study had a multiple‐baseline single‐case experimental design replicated across six male Swedish participants with mild‐to‐moderate post‐stroke aphasia. The participants received training twice a week during 8 weeks, learning how to use the spell checker. At baseline and before every session, the participants wrote two texts which were logged in a keystroke‐logging tool. Dependent variables were continuously measured in the texts, and the participants performed tests of language function and answered questionnaires on reading and writing habits and health‐related quality of life before and after the intervention. The participants were also interviewed about how they had experienced the training. The results were evaluated on individual and group level. Results: The study showed that systematic individual training involving a spell checker was experienced as positive by the participants and that they all described their writing ability in more positive terms after the intervention. Evaluation showed statistically significant improvements on group level for the dependent variables of spelling accuracy, rated syntax, writing speed and proportion of unedited text during text writing when using the spell checker. The intervention also had a generalising effect on writing speed and editing during text writing without the spell checker and on spelling accuracy in a dictation test. The participants who had the greatest spelling problems were the ones who showed the most progress, but participants with only minor writing difficulties at baseline also improved. Conclusions & Implications: The study shows that a digital spelling aid constitutes effective support for people with aphasia and may also affect levels other than spelling. The training had a generalising positive effect on text writing and spelling in a test. Although writing difficulties is a persisting symptom in aphasia, it can be supported and improved through use of digital spelling aids. Hence, treatment of writing ability should always be included in the rehabilitation of people with aphasia. WHAT THIS PAPER ADDS: What is already known on this subject: Use of a technical writing aid can have a positive impact on the written output of persons with aphasia. Using a digital spell checker may improve spelling as well as other levels of writing, but it has not been investigated using a keystroke‐logging tool in combination with language‐test scores and results from questionnaires. What this paper adds to existing knowledge: Through analyses on both individual and group level, this study shows that a digital spelling aid constitutes effective support for people with aphasia and also affects levels other than spelling. The training had a generalising positive effect on text writing and spelling in a test. What are the potential or actual clinical implications of this work?: Digital spelling support, which is a relatively simple and inexpensive technology, can support and improve text writing in persons with post‐stroke aphasia. [ABSTRACT FROM AUTHOR]

Background: Debilitating speech and communication changes in Parkinson's disease (PD) lead to diminished quality of life for people with PD and their communication partners. Maintenance of the long‐term effects of treatment such as LSVT LOUD® remains equivocal. Development of supported long‐term maintenance programs is warranted. Aims: This article describes the development and preliminary outcome data for PD Check‐In, a supported self‐management intervention for the maintenance of speech and social communication for people with PD following LSVT LOUD. Methods & Procedures: A narrative literature review of the principles of self‐management and social cognitive theory of self‐regulation was conducted to develop the core elements of PD Check‐In. PD Check‐In was conducted in person by a speech and language therapist (SLT) for three participants at 6 and 12 weeks, and at 6, 12 and 24 months following LSVT LOUD. Outcome measures included vocal intensity (SPL) during monologue and the dysarthria impact profile (DIP). PD Check‐In utilized semi‐structured discussion to develop, evaluate, and support the self‐efficacy and skill of the person with PD in maintaining speech and social communication. Outcomes & Results: Six conceptual elements of PD Check‐In were identified in the development phase: partnerships, self‐reflection, maintenance issues, revision, goal‐setting and maintenance strategies. Preliminary intervention data revealed monologue vocal intensity at 24 months post‐LSVT LOUD was maintained above pre‐treatment level, but below levels achieved post‐treatment. The psychosocial impact of speech changes from pre‐LSVT LOUD to 24 months post‐treatment as measured by the DIP was variable. Qualitative statements reflected participant experiences underlying the clinical data. Conclusions & Implications: The theoretical and practical underpinnings of PD Check‐In were defined. The impact of PD Check‐In on three persons with PD was variable but positive. Further evaluation of the model is warranted. What this paper adds: What is already known on the subject: LSVT LOUD provides efficacious treatment for the speech disorder associated with PD. Long‐term maintenance of speech post‐treatment varies following self‐managed and group therapy interventions. People with PD have an unmet expectation of long‐term maintenance of speech and improved quality of life following intensive treatment. What this paper adds to existing knowledge: This study describes the development of a novel clinic‐based approach to long‐term maintenance of speech in PD based on the principles of self‐management and self‐efficacy. It provides preliminary data to demonstrate the method and its effects on three participants with varying speech difficulty, self‐management skill development and psychosocial impact. What are the potential or actual clinical implications of this work?: The positive impact of PD Check‐In on the maintenance of monologue vocal intensity above baseline 24 months post‐intensive treatment was independent of the variable impact on the quality of life of the participants. Further exploration of PD Check‐In is warranted to determine the efficacy of this approach. [ABSTRACT FROM AUTHOR]

Background: The Communicative Participation Item Bank (CPIB) is a patient‐reported outcome measure (PROM) designed to measure the extent of interference, or difficulty, experienced by adults with communication disorders participating in their day‐to‐day communication activities. To date, there is limited evidence regarding sensitivity of the CPIB for capturing change with intervention in people with Parkinson's disease (PwPD). Aims: The purpose of this study was to examine the following measurement properties of the CPIB in PwPD who received community‐based, standard care, speech‐language therapy focusing on motor speech concerns: Change over time between treatment and observation groups, comparison to patient‐defined ideal and satisfactory targets, comparison of static short form to computerised adaptive testing (CAT), comparison of self to proxy‐rated scores, and comparison to other common PROMs. Methods and Procedures: Forty‐six PwPD (20 treatment/26 observation) completed data collection upon enrolment (pre‐treatment) and 6 months later. In addition to the CPIB, PROMs included the Voice Handicap Index 10‐item short form (VHI‐10), PROMIS Global Health‐Related Quality of Life, Levels of Speech Usage, self‐rated speech severity, and Patient Health Questionnaire‐9 (PHQ‐9). Participants also engaged in qualitative interviews. Forty‐four family members completed proxy CPIB ratings. Outcomes and Results: There were no significant differences between treatment and observation groups on the CPIB pre‐treatment, but there were significant differences post‐treatment. The differences appeared to be largely due to significant gains in the treatment group. No participants reached their ideal CPIB target, and few reached their satisfactory target. Static CPIB short form and CAT scores were not significantly different, with an average of five CAT items administered per participant. Overall group similarities between patient and proxy scores may have obscured wide variability across individual patient‐proxy pairs. Associations between CPIB and VHI‐10, health‐related quality of life, self‐reported speech severity, and depression ranged from weak to moderate. Conclusions and Implications: The CPIB appears to be sensitive to capturing change with intervention, and similar results are obtained with the static short form and CAT formats. One clinical caution is that even with gains observed in the treatment group, no participants obtained their ideal communicative participation goals, and few obtained a satisfactory level of communicative participation. Thus, while current interventions are beneficial, they may not meet the full range of clients' communication needs. While responding to the CPIB through a proxy rater may be feasible, caution is warranted due to concerns about maintaining the autonomy of PwPD. What this paper adds: What is already known on this subject: The communication disorders associated with Parkinson's disease (PD) can have a negative impact on quality of life and life participation as measured by patient (or person)‐reported outcome measures (PROMs). The Communicative Participation Item Bank (CPIB) is one PROM available to use with adults with communication disorders. However, little is known about whether the CPIB captures changes in communicative participation as a result of standard care treatment for people with Parkinson's disease (PwPD). Use of computerised adaptive testing (CAT), proxy report and comparison to targeted participation outcomes have not been explored. What this study adds to existing knowledge: As a result of this study, we know that the CPIB captured differences between treatment and observation groups after community‐based, standard care speech therapy intervention focusing on motor speech production in PwPD. Static short form and CAT scores did not differ significantly, so the CAT option provides better efficiency requiring, on average, five items to administer compared to the 10‐item short form. Proxy and PwPD scores did not differ as a group, but wide variability was noted. What are the potential or actual clinical implications of this work?: The CPIB may be a clinically sensitive instrument for capturing changes in communicative participation after treatment. No participants met their ideal CPIB target, and few reached their satisfactory target, suggesting that while current interventions contribute to gains in communicative participation, there are still unmet needs that may call for support and interventions addressing the more complex array of factors affecting communicative participation outcomes for PwPD. [ABSTRACT FROM AUTHOR]

Background: The interest in measuring quality of life (QoL) in persons with intellectual disability (ID) has brought about a number of QoL measurements for this population. These measurements need to address two issues that have contributed to enhancing the current instruments. First, the necessity to develop measures with adequate psychometric properties, which has been discussed in recent studies, and second, the agreement between experts in analysing objective and subjective perspectives, as well as the use of self‐report to include the participation of the person with ID. The question that we set out to investigate in this paper is whether the measurements function properly for the person with ID, independent of their level of severity. We used the Spanish version of the Personal Outcomes Scale, as it is a psychometrically sound instrument and includes three sources of information (the person with ID, a professional and a family member). Method: The sample was composed of 529 persons with ID (296 men, representing 55.95% of the total sample, and 233 women, with Mage = 35.03, SD = 10.82) from several regions of Spain, along with their professional of reference and a family member. The severity variable was estimated for each item based on estimations of differential item functioning. Results: The results showed that several items were undervalued by the assessments if the severity of the ID was greater. Mainly, this difference was observed in the assessments by professionals and in the dimensions of rights, personal development and self‐determination. Conclusions: This paper focuses on the uses and interpretations of the results of the QoL measurements in the Personal Outcomes Scale. The results indicate that, in our sample, when people with high levels of ID are assessed, the functioning of some items are affected by the severity of this disability. For correct use, these items must be interpreted on the basis of the results obtained. Additionally, it is necessary to thoroughly review the QoL indicators for persons with severe or profound ID. [ABSTRACT FROM AUTHOR]

Background: Head and neck cancers (HNC) are strongly associated with malnutrition. This systematic review aimed to investigate the optimal frequency of individualised nutrition counselling (INC) pre‐, peri‐ and post‐treatment for patients with HNC. Methods: Pubmed, EMBASE, Cinahl and Scopus were searched from inception through to April 2020 to identify randomised controlled trials (RCTs) that focused on the INC frequency for adult patients with HNC (Registration no. 178868). The outcomes assessed were nutritional status, dietary intake, weight change, treatment interruptions, unplanned hospital admissions, quality of life, complications and morbidity. Certainty of evidence was assessed using Grades of Recommendation, Assessment, Development and Evaluation (GRADE). Results: Four RCTs were identified with five papers (n = 500 total participants). The certainty of evidence was 'high' for nutritional status and quality of life, 'moderate' for treatment interruptions and unplanned hospital admissions, and 'low' for percentage weight change, complications/morbidity and dietary intake. Compared to control groups, there were consistent improvements for nutritional status, quality of life, treatment interruptions, unplanned hospital admissions, dietary intake, percentage weight change and morbidity when weekly INC was provided peri‐treatment and fortnightly INC was provided post‐treatment. No statistical significance was found for treatment interruptions, dietary intake and weight change when INC was provided fortnightly peri‐treatment only. There were no RCTs in the current review that offered INC pre‐treatment. Conclusions: This systematic review shows beneficial effects with weekly INC peri‐treatment and fortnightly INC post‐treatment for patients with HNC in all outcomes studied. Future research should focus on models of care to address the optimal frequency of pre‐treatment INC as well as the duration of post‐treatment INC. [ABSTRACT FROM AUTHOR]

Objective: A concept elicitation, cognitive debriefing, and usability study was undertaken to: (1) explore migraine symptoms and day‐to‐day impacts; (2) determine the comprehensiveness and comprehensibility of the previously developed 24‐Hour Migraine Quality of Life Questionnaire electronic patient‐reported outcome (24‐Hr MQoLQ ePRO) items, and the appropriateness and understanding of the recall period, response options, and instructions; and (3) assess the usability on an electronic hand‐held device. Methods: Eleven United States English‐speaking people with episodic migraine were recruited to participate in one‐on‐one interviews, which followed methods appropriate for concept elicitation, cognitive debriefing, and usability testing. Interviews were audio‐recorded, transcribed, and analyzed following the constant comparative method. Results: Participants had a mean age of 42 years, and 8 were female. Through spontaneous mention or probing, all concepts of the 24‐Hr MQoLQ ePRO were endorsed by a majority of the participants. Cognitive interviewing confirmed the 24‐Hr MQoLQ ePRO instructions were clear, meaningful, and important to assess as symptoms and day‐to‐day impacts experienced as a result of migraine. Overall impressions of the ePRO device were overwhelmingly favorable, and the ePRO device was preferred to paper and pencil by all participants. Participant responses regarding the level of headache pain that would be acceptable in order to continue to go about daily activities ranged from 3 to 6, on a scale of 0 to 10, with 0 being "no headache" and 10 being "the worst headache." Conclusions: The 24‐Hr MQoLQ ePRO is content‐valid and appropriate for inclusion in future acute treatment for migraine studies designed to measure the symptoms and health‐related quality of life of migraine. [ABSTRACT FROM AUTHOR]

This review aims to investigate the patient-reported outcomes currently used in the burning mouth syndrome literature and to explore whether any standardisation of such measures has taken place. Electronic databases were searched for all types of burning mouth syndrome studies using patient-reported outcome measures. Studies were selected by predefined inclusion criteria. Copies of the papers obtained were thoroughly reviewed. A study-specific data extraction form was used, allowing papers to be reviewed in a standardised manner. The initial literature search yielded a total of 173 citations, 43 of which were deemed suitable for inclusion in this study. Symptom severity and symptomatic relief were reported as a patient-reported outcome measure in 40 of the studies and quantified most commonly using a visual analogue scale. Quality of life was reported in 13 studies included in this review. Depression and/or anxiety was reported in 14 of the studies. As is evident from the variety of questionnaires and instruments used in the evaluation of the impact of burning mouth syndrome on patients' lives, no standardisation of patient outcomes has yet been achieved. [ABSTRACT FROM AUTHOR]

The paper highlights that macroeconomic policies do not often confer anticipated positive benefits in the desired direction. Indeed, macroeconomic policies may impact health outcomes negatively, create inequality and some other undesirable effects which may have significant effects on social well-being. While macroeconomic policies can have great impacts on health outcomes, the nature of the impacts of macroeconomic variables on health or proximate determinants of health is complex because they operate through the whole economy with significant lags. As a result of the non-availability of theoretical guidance on the appropriate measurement of health outcomes, the multiplicity of the various indicators gives rise to subjective interpretations of results. There are a number of areas where future research should focus. These include developing a better understanding of the transmission mechanism from macroeconomics policies to health outcome variables, and how macroeconomic policies can be made more effective and minimize the possible negative impacts on health outcomes. [ABSTRACT FROM AUTHOR]

ABSTRACT Across the addictions field, the primary outcome in treatment research has been reduction in drug consumption. A comprehensive view of the impact of substance use disorders on human functioning suggests that effective treatments should address the many consequences and features of addiction beyond drug use, a recommendation forwarded by multiple expert panels and review papers. Despite recurring proposals, and a compelling general rationale for moving beyond drug use as the sole standard for evaluating addiction treatment, the field has yet to adopt any core set of 'other' measures that are routinely incorporated into treatment research. Among the many reasons for the limited impact of previous proposals has been the absence of a clear set of guidelines for selecting candidate outcomes. This paper is the result of the deliberations of a panel of substance abuse treatment and research experts convened by the National Institute on Drug Abuse to discuss appropriate outcome measures for clinical trials of substance abuse treatments. This paper provides an overview of previous recommendations and outlines specific guidelines for consideration of candidate outcomes. A list of outcomes meeting those guidelines is described and illustrated in detail with two outcomes: craving and quality of life. The paper concludes with specific recommendations for moving beyond the outcome listing offered in this paper to promote the programmatic incorporation of these outcomes into treatment research. [ABSTRACT FROM AUTHOR]

Interpreting results from deprescribing interventions to generate actionable evidence is challenging owing to inconsistent and heterogeneous outcome definitions between studies. We sought to characterize deprescribing intervention outcomes and recommend approaches to measure outcomes for future studies. A scoping literature review focused on deprescribing interventions for polypharmacy and informed a series of expert panel discussions and recommendations. Twelve experts in deprescribing research, policy, and clinical practice interventions participating in the Measures Workgroup of the US Deprescribing Research Network sought to characterize deprescribing outcomes and recommend approaches to measure outcomes for future studies. The scoping review identified 125 papers reflecting 107 deprescribing studies. Common outcomes included medication discontinuation, medication appropriateness, and a broad range of clinical outcomes potentially resulting from medication reduction. Panel recommendations included clearly defining clinically meaningful medication outcomes (e.g., number of chronic medications, dose reductions), ensuring adequate sample size and follow‐up time to capture clinical outcomes resulting from medication discontinuation (e.g., quality of life [QOL]), and selecting appropriate and feasible data sources. A new conceptual model illustrates how downstream clinical outcomes (e.g., reduction in falls) should be interpreted in the context of initial changes in medication measures (e.g., reduction in mean total medications). Areas needing further development include implementation outcomes specific to deprescribing interventions and measures of adverse drug withdrawal events. Generating evidence to guide deprescribing is essential to address patient, caregiver, and clinician concerns about the benefits and harms of medication discontinuation. This article provides recommendations and an initial conceptual framework for selecting and applying appropriate intervention outcomes to support deprescribing research. [ABSTRACT FROM AUTHOR]

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

Objectives In the increasingly competitive environment of aged care in Australasia, how can providers and consumers be sure that the care support delivered is efficient and makes a positive difference? Monitoring outcomes has long been emphasised for ensuring quality service delivery, yet there is currently no consistently applied approach available. Methods This paper considers the importance of measuring outcomes in community care and reports on the development and field trial of the Australian Community Care Outcomes Measure ( ACCOM). The ACCOM combines data already collected by services on the capabilities and care needs of individual consumers and their demographic characteristics with a short questionnaire on quality of life based on the Adult Social Care Outcomes Toolkit (ASCOT). It is completed by consumers and staff. Results In the first round of a field test of the ACCOM (2016), baseline data were successfully collected for over 200 individual aged care clients, each receiving consumer-directed care ( CDC) packages at home. Results show the measure to be practical and easy to use. A second round to measure change and enable the calculation of outcomes for each consumer was successfully completed 6 months later. Conclusion Field testing of the ACCOM shows promising results. More extensive trials of the measure are planned across Australia. [ABSTRACT FROM AUTHOR]

Aim The International Classification of Functioning Disability and Health, Child-Youth version ( ICF- CY) provides a framework for describing and evaluating health, intervention outcomes, and needs assessment. It can, however, also serve as a system for classifying the focus of outcome studies and identification of gaps in current knowledge. Method The paediatric arterial ischaemic stroke ( AIS) population was targeted. Multiple databases were systematically searched for AIS outcome studies focussing on functioning or disability. Findings were rated using the ICF- CY framework. Results Twenty-eight studies were identified. Most were cross-sectional and age range at assessment varied widely. Sixty-seven different standardized measures were used, predominantly evaluating body functions. The most common domains of activity and participation reported were learning and applying knowledge, general tasks and demands, and self-care skills. Health-related quality of life was measured in nine papers. Environmental factors were rarely evaluated. Interpretation AIS outcome studies addressing the relationship between body structures and functions (e.g. brain lesion characteristics, neurological examination findings) and activities, participation, and quality of life have emerged in recent years. Comparison of findings across studies is complicated by design and tool selection. The relationship between components of activity limitation and participation restriction is rarely explored. [ABSTRACT FROM AUTHOR]

The author discusses two articles from D. M. Donovan and S. T. Tiffany and colleagues on substance abuse treatment outcomes. He is critical that the papers have been done in the past and the authors have attempted anew to rethink the problem. He also relates that the papers have characterized that the symptoms of the substance dependence and abuse are described in International Classification of Diseases (ICD-10) and Diagnostic and Statistical Manual of Mental Disorders (DSM-IV).

Abstract: Supporting Carers of Children and Adolescents with Eating Disorders in Austria (SUCCEAT) is an intervention for carers of children and adolescents with anorexia nervosa and atypical anorexia nervosa. This paper describes the study protocol for a randomised controlled trial including the process and economic evaluation. Carers are randomly allocated to one of the 2 SUCCEAT intervention formats, either 8 weekly 2‐hr workshop sessions (n = 48) or web‐based modules (n = 48), and compared with a nonrandomised control group (n = 48). SUCCEAT includes the cognitive‐interpersonal model, cognitive behavioural elements, and motivational interviewing. The goal is to provide support for carers to improve their own well‐being and to support their children. Outcome measures include carers' distress, anxiety, depression, expressed emotions, needs, motivation to change, experiences of caregiving, and skills. Further outcome measures are the patients' eating disorder symptoms, emotional problems, behavioural problems, quality of life, motivation to change, and perceived expressed emotions. These are measured before and after the intervention, and 1‐year follow‐up. [ABSTRACT FROM AUTHOR]

Abstract: Success in testing research outcomes requires identification of effective recruitment strategies in the targeted population. In this paper, we present the protocol for our NIH‐funded study as well as success rates for the various recruitment strategies employed. This longitudinal observational study is: developing a phenotyping algorithm for asthma in older adults, exploring the effects of the asthma phenotype and of volatile organic compounds on asthma control, and developing a predictive model of asthma quality of life. A sub‐aim is to characterize barriers to successful medication management in older adults with asthma. Individuals are eligible if they are ≥60 years, have a positive response to at least 1 of 6 asthma screening questions, are non‐smokers, and demonstrate bronchodilator reversibility or a positive bronchial challenge test with methacholine. Exclusion criteria are smokers who quit <5 years ago or with a >20 pack year smoking history, and those having other chronic pulmonary diseases. Participants (N = 190) complete baseline pulmonary function testing, questionnaires, sputum induction, skin prick testing, and have blood drawn for Vitamin D and Immunoglobulin E. Home environmental assessments are completed including 24‐hr particulate and volatile organic compound measurements. At 9‐months post‐baseline, home spirometry, medication assessment, and assessment of asthma quality of life and asthma control are assessed. At 18‐months post‐baseline, home spirometry, completion of baseline questionnaires, and a home environmental assessment are completed. We have employed multiple recruitment efforts including referrals from clinical offices, no‐cost media events, flyers, and ads. The most successful efforts have been referrals from clinical offices and media events. [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.)

Abstract: Aims: This narrative exploration of alcohol treatment research focuses on key contentions and advances in alcohol treatment during the critical 1970s and 1980s. Methods: Papers and books which signal some of the major debates and advances in alcohol treatment research were selected from the 1970s and 1980s. The selection process was based on significant debate during this period, and included those that influenced the field in general and this author in particular. Results: This was a period where challenges to traditional models and concepts, and the perceived universal need for long‐term treatment, were accompanied by contention but also advances in research and treatment approaches. The debates and advances resonate today. These include the recognition that: intensive and long‐term treatment is not always required; for dependent drinkers, relapse is a common treatment outcome meriting specific treatment approaches to prevent and reduce this risk; controlled drinking is a treatment option, especially for younger and less dependent drinkers; and an important contributor to enduring change is access to, and realization of, improvements in the quality of life. Conclusions: Pioneering research and publications in the 1970s and 1980s, sometimes conducted and produced in contentious contexts, influenced significantly conceptualizations of alcohol‐related problems, and laid the foundations for treatment hypotheses and research, improving access to a broader range of evidence‐based treatment. These underpinning works influenced the development of stepped‐up care from brief to intensive interventions, relapse prevention and treatment options not limited to abstinence, and they identified the need to include a stronger focus on quality of life. [ABSTRACT FROM AUTHOR]

Abstract: Background and objective: Central sensitization (CS) is a phenomenon associated with several medical diagnoses, including postcancer pain, low back pain, osteoarthritis, whiplash, and fibromyalgia. CS involves an amplification of neural signaling within the central nervous system that results in pain hypersensitivity. The purpose of this systematic review was to gather published studies of a widely used outcome measure (the Central Sensitization Inventory [CSI]), determine the quality of evidence these publications reported, and examine the measurement properties of the CSI. Databases and data treatment: Four databases were searched for publications from 2011 (when the CSI was developed) to July 2017. The Consensus‐Based Standards for the Selection of Health Measurement Instruments (COSMIN) checklist was applied to evaluate methodological quality and risk of bias. In instances when COSMIN did not offer a scoring system for measurement properties, qualitative analyses were performed. Results: Fourteen studies met inclusion criteria. Quality of evidence examined with the COSMIN checklist was determined to be good to excellent for all studies for their respective measurement property reports. Interpretability measures were consistent when publications were analyzed qualitatively, and construct validity was strong when examined alongside other validated measures relating to CS. Conclusions: An assessment of the published measurement studies of the CSI suggest the tool generates reliable and valid data that quantify the severity of several symptoms of CS. [ABSTRACT FROM AUTHOR]

To critically review conceptual frameworks for available patient-reported outcome (PRO) questionnaires in men having radical prostatectomy (RP), psychometrically evaluate each questionnaire, and identify whether each is appropriate for use at the level of the individual patient. We searched PubMed, the Reports and Publications database of the University of Oxford Patient-Reported Outcomes Measurement Group and the website of the International Consortium for Health Outcomes Measurement (ICHOM) for psychometric reviews of prostate cancer-specific PRO questionnaires. From these we identified relevant questionnaires and critically appraised the conceptual content, guided by the Wilson and Cleary framework and psychometric properties, using well established criteria. The searches found four reviews and one recommendation paper. We identified seven prostate cancer-specific PROs: the Expanded Prostate Cancer Index Composite-26 (EPIC-26), Expanded Prostate Cancer Index Composite-50 (EPIC-50), University of California-Los Angeles Prostate Cancer Index (UCLA-PCI), Functional Assessment of Cancer Therapy - Prostate Cancer Subscale (FACT-P PCS), European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire - prostate specific 25-item (EORTC QLQ-PR25), Prostate Cancer - Quality of Life (PC-QoL), and Symptom Tracking and Reporting (STAR). Six out of seven measures purported to measure health-related quality of life (HRQL), but items focused strongly on urinary and sexual symptoms/functioning. The remaining questionnaire (STAR) claimed to assess functional recovery after RP. The psychometric evidence for these questionnaires was incomplete and variable in quality; none had evidence that they were appropriate for use with individual patients. Several questionnaires provide the basis of measures of urinary and/ or sexual symptoms/functioning. Further work should explore other aspects of HRQL that are important for men having RP. Further psychometric work is also needed to determine whether they can be used at the individual level. [ABSTRACT FROM AUTHOR]

As the incidence of diabetic foot ulcers (DFU) increases, better treatments that improve healing should reduce complications of these ulcers including infections and amputations. We conducted a randomized controlled trial comparing outcomes between a novel purified reconstituted bilayer membrane (PRBM) to the standard of care (SOC) in the treatment of non‐healing DFUs. This study included 105 patients who were randomized to either of two treatment groups (n = 54 PRBM; n = 51 SOC) in the intent to treat (ITT) group and 80 who completed the study per protocol (PP) (n = 47 PRBM; n = 33 SOC). The primary endpoint was the percentage of wounds closed after 12 weeks. Secondary outcomes included percent area reduction, time to healing, quality of life, and cost to closure. The DFUs that had been treated with PRBM healed at a higher rate than those treated with SOC (ITT: 83% vs. 45%, p = 0.00004, PP: 92% vs. 67%, p = 0.005). Wounds treated with PRBM also healed significantly faster than those treated with SOC with a mean of 42 versus 62 days for SOC (p = 0.00074) and achieved a mean wound area reduction within 12 weeks of 94% versus 51% for SOC (p = 0.0023). There were no adverse events or serious adverse events that were related to either the PRBM or the SOC. In comparison to the SOC, DFUs healed faster when treated with PRBM. Thus, the use of this PRBM is an effective option for the treatment of chronic DFUs. [ABSTRACT FROM AUTHOR]

Pressure injuries are a significant concern for patients undergoing neurosurgical procedures due to prolonged immobility and the complexity of care. This study evaluates the efficacy of standardized pressure ulcer management protocols in preventing pressure injuries and enhancing patient care in a neurosurgical context. A comprehensive retrospective analysis was conducted at a single institution from December 2020 to December 2023, comparing 50 patients who received standardized pressure ulcer management (intervention group) with 50 patients who received conventional care (control group). The study assessed the incidence of pressure ulcers, patient comfort levels using the Kolcaba Comfort Scale and sleep quality using the Richards‐Campbell Sleep Questionnaire (RCSQ). Statistical analysis was performed using SPSS software, version 27.0, applying t‐tests and chi‐square tests as appropriate. The intervention group exhibited a significantly lower incidence of pressure ulcers at all measured time points post‐surgery compared to the control group. Patient comfort levels in the intervention group were consistently higher across psychological, environmental, physiological and socio‐cultural domains. Sleep quality metrics, including sleep depth, latency to sleep onset and overall sleep quality, were significantly improved in the intervention group. The implementation of standardized pressure ulcer management protocols in neurosurgical care significantly reduces the incidence of pressure injuries, enhances patient comfort and improves sleep quality. These findings highlight the importance of adopting structured care protocols to improve postoperative outcomes and patient well‐being in neurosurgical settings. [ABSTRACT FROM AUTHOR]

The article comments on a research paper by J. Aguilera and colleagues on the recurrence of arrhythmia experienced by patients with atrial fibrillation (AF) and chronically isolated pulmonary veins (CI PV). Topics mentioned include the advantage of extensive ablation in achieving rhythm control, the association of nonparoxysmal AF transformation to paroxysmal AF with outcome of a limited repeat ablation method, and the arrhytmia-free survival of patients with CI PV.

Over recent years, an emphasis has emerged in the UK and international policy documents, over the involvement of people in the delivery of health care. However, evaluations of health services still largely rest on outcome measures that reflect professional concerns. As new health services are being developed, new patient-centred outcome measures are needed to evaluate them. This paper aims at exploring the possibility of individual quality of life as an outcome measure for health services. As a first step, it aims to elucidate the relationship of functional outcome measures to the Schedule for the Evaluation of Individual Quality of Life (SEIQoL) in groups of people whose age or medical diagnosis serve as the basis for health service design. Its objectives are to study the relation of SEIQoL scores and life areas to functional status in an older population and in a group of people with chronic obstructive pulmonary disease (COPD). Older people selected their health most frequently as one of the most important areas in their life (9.9%, vs. 8.6% for people with COPD) and were more satisfied with it ( U = 2512, p = 0.007). People's health status did not impact on the way they defined their quality of life, but on their level of satisfaction with discrete life areas. The weights attributed to health were significantly negatively correlated to people's overall quality of life score in the overall sample ( ρ = −0.34, p < 0.001). In the light of recent national and international policy documents advocating for the development of new, more person-centred health services, our results support the proposition of the authors of SEIQoL, that individual quality of life measures have the potential to bring a significant contribution to the evaluation of health services. [ABSTRACT FROM AUTHOR]

The purpose of this paper is to summarize the state of the art in measuring quality of life in haemophila populations. The paper reviews the measures recently included in haemophila trials in the published literature. It also summarizes the development of four new disease-specific measures of health-related quality of life. Two of these were developed for children (the Haemo-QoL and the CHO-KLAT), and two for adults (the Hemofilia-QoL and the Hemolatin-QoL). These new measures show promise for use in clinical trials. Further research is in progress to complete the psychometric testing and cross-cultural validation. [ABSTRACT FROM AUTHOR]

The concept of quality of life (QOL) has been used as an outcome measure to indicate the global health, functioning and wellbeing of a person following illness, injury or disability, and to evaluate the effectiveness of therapeutic interventions. Whilst QOL has been widely used for these purposes by researchers and practitioners in the health and social sciences, it has had limited application by occupational therapists. This has occurred despite the obvious links to occupational therapy philosophy, with both having a multifaceted, holistic, and client-centred approach to people’s lives, and a concern with the roles and functions that give life meaning and value. This paper reviews QOL literature in order to introduce occupational therapists to the issues involved with using this construct, from its conceptualization to its measurement. A guide to the decision-making processes involved in selecting an appropriate QOL outcome measure for use in occupational therapy practice is provided. [ABSTRACT FROM AUTHOR]

Venous ulcers affect up to 3% of the global population, with a high impact on economies and quality of life. This is exacerbated by its recurrence rates, which reach 70% at 12 months after healing. The perpetuation of these cycles of healing and recurrence is not interrupted or even attenuated by the self‐care activities recommended and directed toward their prevention. In this context, we sought to identify the effectiveness of interventions that promote adherence to self‐care to prevent venous ulcer recurrence. In August 2022, we conducted a literature search via EBSCO in the following databases: CINAHL Complete, MEDLINE Complete, Cochrane Database of Systematic Reviews, Scopus, and Web of Science. The inclusion criteria were researched in the form of randomised controlled trials or systematic literature reviews, and 99 studies were identified. During the different times of selection, four studies met the defined inclusion criteria and were included. As the main conclusions, the emphasis goes to the importance of the use of compression and the greater effectiveness of higher compression classes for the prevention of recurrence. Different educational methodologies seem to be important to increase knowledge about prevention, specifically regarding the aetiology of recurrence and the implementation of prevention measures. [ABSTRACT FROM AUTHOR]

WOUND‐Q is a condition‐specific patient‐reported outcome measure developed for all types of chronic wounds, located anywhere on the body. To establish reliability and validity of a patient‐reported outcome measure, multiple pieces of evidence are required. The purpose of this study was to examine the measurement properties of 9 of the 13 WOUND‐Q scales and perform a test–retest reproducibility study in an international sample. In August 2022, we invited members of an international online community (Prolific.com) with any type of chronic wound to complete a survey containing the WOUND‐Q scales, the Wound‐QoL and EQ‐5D. A test–retest survey was performed 7 days after the first survey. It was possible to examine the reliability and validity of eight of the nine WOUND‐Q scales by Rasch Measurement Theory (RMT). To examine test–retest reproducibility intraclass correlation coefficients (ICCs), the standard error of the measurement and the smallest detectable change were calculated. In total, 421 patients from 22 different countries with 11 different types of chronic wounds took part in this study. Our analyses provided further evidence of the reliability and validity of the scales measuring wound characteristics (assessment, drainage, smell), health‐related quality of life (life impact, psychological, sleep, social) and wound treatment (dressing). [ABSTRACT FROM AUTHOR]

Composite endpoints are commonly used as the primary measure of efficacy in heart failure clinical trials to assess the overall treatment effect and to increase the efficiency of trials. Clinical trials still must enrol large numbers of patients to accrue a sufficient number of outcome events and have adequate power to draw conclusions about the efficacy and safety of new treatments for heart failure. Additionally, the societal and health system perspectives on heart failure have raised interest in ascertaining the effects of therapy on outcomes such as repeat hospitalization and the patient's burden of disease. Thus, novel methods for using composite endpoints in clinical trials (e.g. clinical status composite endpoints, recurrent event analyses) are being applied in current and planned trials. Endpoints that measure functional status or reflect the patient experience are important but used cautiously because heart failure treatments may improve function yet have adverse effects on mortality. This paper discusses the use of traditional and new composite endpoints, identifies qualities of robust composites, and outlines opportunities for future research. [ABSTRACT FROM AUTHOR]

Background Improving staff performance is an issue in services for people with intellectual disability. Practice leadership, where the front line leader of a staff team focuses on service user outcomes in everything they do and provides coaching, modeling, supervision and organisation to the team, has been identified as important in improving staff performance. To date this finding is based only on self-report measures. Methods This paper describes and tests an observational measure of practice leadership based on an interview with the front-line manager, a review of paperwork and observations in 58 disability services in Australia. Results The measure showed good internal consistency and acceptable inter-rater reliability. Practice leadership was associated with staff practice and outcomes for service users. The observed measure of practice leadership appears to be a useful tool for assessing whether leadership within a service promotes enabling and empowering support by staff. It was found to discriminate higher and lower performing services in terms of active support. Conclusions The measure had good reliability and validity although some further testing is required to give a complete picture of the possible uses and Conclusions The measure had good reliability and validity although some further testing is required to give a complete picture of the possible uses and reliability of the measure. The measure is potentially useful in contexts of both research and service development. The confirmation of previous findings from self-report measures that practice leadership is related to the quality of staff practice and outcomes for service users has implications for policy and practice in terms of the training of managers and structures for organisational management. [ABSTRACT FROM AUTHOR]

The article discusses the health-related quality of life (HRQoL) measures in adult Systemic Lupus Erythematosus, a chronic inflammatory autoimmune disorder with variable multisystem involvement, an unpredictable relapsing-remitting course. Topics include HRQoL and physician assessments of disease activity and damage; and highlighting the distinct contribution of HRQoL data to understanding patient trajectories and supporting the need for its assessment in SLE.

Aim To provide an update on the use of Patient-Reported Outcome Measures ( PROMs) in the field of implant dentistry (1); to compare PROMs for prostheses supported by one or more implants to alternative treatment options or a healthy dentition (2). Materials and methods The dental literature was searched on PubMed until December 31, 2014, using a general search algorithm. An overall quantitative analysis was performed, and a qualitative appraisal was made on the output of the last 6 years. Per type of edentulism and prosthetic treatment, the general search algorithm was refined in order to select controlled studies comparing PROMs for prostheses supported by one or more implants to alternative treatment options or a healthy dentition. Results With nearly half of the output (300 of 635) published in the last 6 years, there is a growing interest in PROMs by the scientific community. When scrutinizing the 300 most recent publications, only 84 controlled studies could be identified among which 38 RCTs and 31 cohort studies. An ' ad hoc' approach is commonly employed using non-standardized questions and different scoring methods, which may compromise validity and reliability. Overall, 39 eligible papers related to fully edentulous patients treated with an implant overdenture ( IOD) and 9 to fully edentulous patients treated with a fixed implant prosthesis ( FIP). There is plenty of evidence from well-controlled studies showing that fully edentulous patients in the mandible experience higher satisfaction with an IOD when compared to a conventional denture ( CD). This may not hold true for fully edentulous patients in the maxilla. In general, fully edentulous patients seem to opt for a fixed or removable rehabilitation on implants for specific reasons. Data pertaining to partially edentulous patients were limited ( FIP: n = 6; single implants: n = 16). In these patients, the timing of implant placement does not seem to affect patient satisfaction. Patients seem to prefer straightforward implant surgery over complex surgery that includes bone grafting. Conclusion There is an urgent need for standardized reporting of PROMs in the field of implant dentistry. Fully edentulous patients in the mandible experience higher satisfaction with an IOD when compared to a CD. All other types of prostheses have been underexposed to research. [ABSTRACT FROM AUTHOR]

Objective: The aim of this paper is to determine levels of supportive care needs, anxiety, depression and symptoms amongst patients newly diagnosed with localised invasive primary melanoma and if these varied amongst patients who had a sentinel lymph node biopsy (SLNB). We also considered quality of life compared with general population norms. Methods: Patients newly diagnosed with clinical stage IB-II invasive melanoma were ascertained through Queensland hospitals, specialist clinics and pathology laboratories. Validated surveys measured 46 need items (Supportive Care Needs Survey-Short Form + melanoma subscale), anxiety and depression (Hospital Anxiety and Depression Scale) and quality of life and symptoms (Functional Assessment of Cancer Therapy-Melanoma). Regression models compared outcomes according to whether or not participants had a SLNB. Results: We surveyed 386 patients, 155 before and 231 after wide local excision, of whom 46% reported ⩾1 moderate-level or high-level unmet need. The three highest needs were for help with fears about cancer spreading (17%), information about risk of recurrence (17%) and outcomes when spread occurred (16%). Those who had a SLNB were more likely to report a moderate or high unmet need for help with uncertainty about the future or with lymphoedema (p<0.05). Overall, 32% of participants had anxiety and 15% had depression regardless of performance of SLNB. Melanoma-specific symptoms were worse in SLNB patients (p = 0.03). Compared with the general population, emotional well-being was lower amongst melanoma patients. Conclusions: A substantial proportion of newly diagnosed patients with localised invasive melanoma need further melanoma-specific information and support with psychological concerns. Patients who have a SLNB clear of disease may need help with symptoms after surgery. [ABSTRACT FROM AUTHOR]

Background: Social isolation and loneliness are more common in older adults and are associated with a serious impact on their well‐being, mental health, physical health, and longevity. They are a public health concern highlighted by the COVID‐19 pandemic restrictions, hence the need for digital technology tools to enable remotely delivered interventions to alleviate the impact of social isolation and loneliness during the COVID‐19 restrictions. Objectives: To map available evidence on the effects of digital interventions to mitigate social isolation and/or loneliness in older adults in all settings except hospital settings. Search Methods: We searched the following databases from inception to May 16, 2021, with no language restrictions. Ovid MEDLINE, Embase, APA PsycInfo via Ovid, CINAHL via EBSCO, Web of Science via Clarivate, ProQuest (all databases), International Bibliography of the Social Sciences (IBSS) via ProQuest, EBSCO (all databases except CINAHL), Global Index Medicus, and Epistemonikos. Selection Criteria: Titles and abstracts and full text of potentially eligible articles were independently screened in duplicate following the eligibility criteria. Data Collection and Analysis: We developed and pilot tested a data extraction code set in Eppi‐Reviewer and data were individually extracted and coded based on an intervention‐outcome framework which was also used to define the dimensions of the evidence and gap map. Main Results: We included 200 articles (103 primary studies and 97 systematic reviews) that assessed the effects of digital interventions to reduce social isolation and/or loneliness in older adults. Most of the systematic reviews (72%) were classified as critically low quality, only 2% as high quality and 25% were published since the COVID‐19 pandemic. The evidence is unevenly distributed with clusters predominantly in high‐income countries and none in low‐income countries. The most common interventions identified are digital interventions to enhance social interactions with family and friends and the community via videoconferencing and telephone calls. Digital interventions to enhance social support, particularly socially assistive robots, and virtual pets were also common. Most interventions focused on reducing loneliness and depression and improving quality of life of older adults. Major gaps were identified in community level outcomes and process indicators. No included studies or reviews assessed affordability or digital divide although the value of accessibility and barriers caused by digital divide were discussed in three primary studies and three reviews. Adverse effects were reported in only two studies and six reviews. No study or review included participants from the LGBTQIA2S+ community and only one study restricted participants to 80 years and older. Very few described how at‐risk populations were recruited or conducted any equity analysis to assess differences in effects for populations experiencing inequities across PROGRESS‐Plus categories. Authors' Conclusions: The restrictions placed on people during the pandemic have shone a spotlight onto social isolation and loneliness, particularly for older adults. This evidence and gap map shows available evidence on the effectiveness of digital interventions for reducing social isolation or loneliness in older adults. Although the evidence is relatively large and recent, it is unevenly distributed and there is need for more high‐quality research. This map can guide researchers and funders to consider areas of major gaps as priorities for further research. [ABSTRACT FROM AUTHOR]

Objectives The European Position Paper on Rhinosinusitis and Nasal Polyps describes methods to perform population-based and clinical studies on chronic rhinosinusitis in a standardised way, and it also describes how to clinical investigate CRS. The aim of this cross-sectional study was to evaluate quality of life and objective findings in persons with chronic rhinosinusitis recruited from the general population. Design As part of a trans- European study, selected respondents to a survey questionnaire were invited for a clinical visit. Subjective symptoms and rhinoscopy were used for the clinical diagnosis of chronic rhinosinusitis, and persons with and without chronic rhinosinusitis were compared. Setting This research took place in the department of Otolaryngology, Odense University Hospital. Participants A total of 366 persons participated at the clinical visit, and of these, 91 were diagnosed with chronic rhinosinusitis, 271 without chronic rhinosinusitis and four persons were excluded. Main outcome measures Severity of symptoms and disease-specific quality of life were measured using the Sino- Nasal Outcome Test 22, and generic quality of life was measured using European quality of life - 5 dimensions including an index score and a visual analogue scale. Results The prevalence of chronic rhinosinusitis was 9%, and the prevalence of polyps was 4%. Persons with chronic rhinosinusitis had significantly reduced disease-specific quality of life ( P = 0.00) and generic quality of life ( P = 0.04 and 0.01) compared with persons without chronic rhinosinusitis. Having chronic rhinosinusitis was correlated to age, allergic rhinitis and smell. Conclusion This study gives insight into health-related quality of life and objective findings in persons with chronic rhinosinusitis recruited from the general population. [ABSTRACT FROM AUTHOR]

Linked Content This article is linked to Vuitton et al paper. To view this article visit https://doi.org/10.1111/apt.13948. [ABSTRACT FROM AUTHOR]

Background Since autism was first described, major difficulties in social interaction have been a defining feature of individuals with autism spectrum disorders (ASD). Social skills groups are a common intervention for individuals with ASD. Although a frequently recommended practice, the few studies that have addressed the efficacy of social skills groups have shown mixed results. Objectives To determine the effectiveness of social skills groups for improving social competence, social communication, and quality of life for people with ASD who are six to 21 years of age. Search methods We searched the following databases in December 2011: CENTRAL (2011 Issue 4), MEDLINE (1948 to November Week 3, 2011), EMBASE (1980 to Week 50, 2011), PsycINFO (1887 to December Week 2, 2011), CINAHL (1937 to current), ERIC (1966 to current), Sociological Abstracts (1952 to current), OCLC WorldCat (12 December 2011), Social Science Citation Index (1970 to 16 December 2011), and the metaRegister of Controlled Trials (20 December 2011). We also searched the reference lists of published papers. Selection criteria Randomized control trials (RCTs) comparing treatment (social skills groups) with a control group who were not receiving the treatment for participants aged six to 21 years with ASD. The control group could be no intervention, wait list, or treatment as usual. Outcomes sought were standardized measures of social competence, social communication, quality of life, emotion recognition, and any other specific behaviors. Data collection and analysis Two review authors independently selected and appraised studies for inclusion and assessed the risk of bias in each included study. All outcome data were continuous and standardized mean difference effect sizes (ES) with small sample correction were calculated. We conducted random-effects meta-analysis where possible. Main results We included five RCTs evaluating the effects of social skills groups in 196 participants with ASD aged 6 to 21 years old. The results show there is some evidence that social skills groups improve overall social competence (ES = 0.47, 95% confidence interval (CI) 0.16 to 0.78, P = 0.003) and friendship quality (ES = 0.41, 95% CI 0.02 to 0.81, P = 0.04) for this population. No differences were found between treatment and control groups in relation to emotional recognition (ES = 0.34, 95% CI -0.20 to 0.88, P = 0.21) assessed in two studies or social communication as related to the understanding of idioms (ES = 0.05, 95% CI -0.63 to 0.72, P = 0.89), which was assessed in only one study. Two additional quality of life outcomes were evaluated, with results of single studies suggesting decreases in loneliness (ES = -0.66, 95% CI -1.15 to -0.17) but no effect on child or parental depression. No adverse events were reported. Given the nature of the intervention and the selected outcome measures, the risk of performance and detection bias are high. There is limited generalizability from the studies as they were all conducted in the US; they focused mainly on children aged 7 to 12, and the participants were all of average or above average intelligence. Authors' conclusions There is some evidence that social skills groups can improve social competence for some children and adolescents with ASD. More research is needed to draw more robust conclusions, especially with respect to improvements in quality of life. Plain Language Summary Social skills groups for people aged 6 to 21 years with autism spectrum disorders (ASD) Social deficits remain one of the most difficult areas for individuals with autism spectrum disorders, especially for those with average or above average cognitive skills. An intervention often used to treat social deficits for these individuals is social skills groups. This review synthesized the results of five randomized controlled trials of social skills groups including 196 individuals with autism spectrum disorders (aged 6 to 21 years). We found individuals receiving treatment showed some indications of improved social competence and better friendships when compared with those not receiving treatment. Participants receiving treatment also showed indications of less loneliness. The ability to recognize different emotions was measured in two studies and there was no evidence that it was improved by taking part in a social skills group. Social communication as it relates to idiomatic expressions was only reported in one study and no significant differences between treatment and control group were found. Nor was there evidence of a beneficial effect of social skills groups on parental or child depression. No adverse effects were reported in the studies. Limitations of this review include a small number of studies and participants, and a high risk of bias due to parents knowing whether their child was in the intervention group or not. The studies focused mainly on children with ASD aged 7 to 12 with average or above average intelligence, and they were all carried out in the US. [ABSTRACT FROM AUTHOR]

Objective This paper explores the lessons learned from a series of three randomized controlled trials that included 498 community-living frail older adults (≥65 years) using home care services in Southern Ontario, Canada. Each study was designed to evaluate the effectiveness of different multi-component nurse-led health promotion and disease prevention (HPDP) interventions. Methods The nurse-led HPDP interventions were 6- or 12-month multi-component and evidence-based strategies targeting known risk factors for functional decline and frailty. Across the three studies, a common approach was used to measure the change in health-related quality of life (HRQOL) (SF-36) and the costs of use of health services (Health and Social Services Utilization Inventory) from baseline to the end of the intervention. Results The main lesson learned from the three studies is that nurse-led HPDP interventions for frail older home care clients provide greater improvements in HRQOL compared with usual home care. Such approaches are highly acceptable to this population and can be implemented using existing home care resources. Nurse-led HPDP interventions should include multiple home visits, multidimensional screening and assessment, multi-component evidence-based HPDP strategies, intensive case management, inter-professional collaboration, providers with geriatric training and experience, referral to and coordination of community services, and theory use. Conclusion The results of the three trials underscore the need to reinvest in nurse-led HPDP interventions in home care to optimize HRQOL and promote ageing in place in the target population of frail older adults. More studies are needed to evaluate the effectiveness of additional nurse-led HPDP interventions in other contexts and settings. [ABSTRACT FROM AUTHOR]

Heart failure (HF) is a major cause of mortality and morbidity, representing a leading cause of death and hospitalization among U.S. Medicare beneficiaries. Advances in science have generated effective interventions to reduce adverse outcomes in HF, particularly in patients with reduced left ventricular ejection fraction. Unfortunately, effective therapies for heart failure are often not utilized in an effective, safe, timely, equitable, patient-centered, and efficient manner. Further, the risk of adverse outcomes for HF remains high. The last decades have witnessed the growth of efforts to measure and improve the care and outcomes of patients with HF. This paper will review the evolution of quality measurement for HF, including a brief history of quality measurement in medicine; the measures that have been employed to characterize quality in heart failure; how the measures are obtained; how measures are employed; and present and future challenges surrounding quality measurement in heart failure. [ABSTRACT FROM AUTHOR]

Aim: Hypoglycaemia affects many people with Type 2 diabetes using insulin and other glucose‐lowering therapies. This systematic review examined the impact of severe hypoglycaemia (episodes requiring external assistance) on psychological outcomes (e.g. emotional well‐being, health status and quality of life) in adults with Type 2 diabetes. Methods: MEDLINE Complete, PsycINFO and CINAHL databases were searched for peer‐reviewed empirical studies, published in English, reporting the occurrence and severity of hypoglycaemia and its relationship with patient‐reported outcomes (PROs) in adults with Type 2 diabetes. Data were extracted from published reports and analysed. Results: Of 3756 potentially relevant abstracts, 29 studies met the inclusion criteria. Most reported cross‐sectional data and sample sizes varied widely (N = 71 to 17 563). Although definitions of mild and severe hypoglycaemia were largely consistent between studies, additional non‐standard categorizations (e.g. moderate, very severe) were apparent and recall periods varied. Overall, severe hypoglycaemia was associated with increased fear of hypoglycaemia and decreased emotional well‐being, health status and diabetes‐specific quality of life. Effect sizes show that the association with fear of hypoglycaemia was stronger than with general health status. Conclusions: Notwithstanding the limitations of the empirical studies, these findings indicate that severe hypoglycaemia in adults with Type 2 diabetes (insulin‐ and non‐insulin‐treated) is associated with impaired psychological outcomes. Healthcare professionals should address the psychological impact of severe hypoglycaemia during clinical consultations, to support individuals to minimize exposure to, and the psychological consequences of, severe hypoglycaemia. What's new?: This is the first systematic review examining the psychological impact of severe hypoglycaemia in adults with Type 2 diabetes.For the most part, severe hypoglycaemia is associated with greater fear of hypoglycaemia, impaired general emotional well‐being and health status, and greater impairment of diabetes‐specific quality of life.The psychological impact of severe hypoglycaemia is not exclusive to those managing their diabetes with insulin.Health professionals need to actively assess and address the frequency and psychological impact of severe hypoglycaemia, minimize risk of exposure to severe hypoglycaemia, and provide support to the individual to deal with the psychological consequences. [ABSTRACT FROM AUTHOR]

Aliment Pharmacol Ther 2011; 34: 1123-1132 Summary Background Cirrhotic patients have an impaired health-related quality of life (HRQOL), which is usually analysed using static paper-pencil questionnaires. The Patient Reported Outcomes Measurement Information System (PROMIS) computerised adaptive testing (CAT) are flexible, freely available, noncopyrighted, HRQOL instruments with US-based norms across 11 domains. CAT presents five to seven questions/domain depending on the patient's response, from large validated question banks. This provides brevity and precision equivalent to the entire question bank. Aim To evaluate PROMIS CAT tools against 'legacy instruments' for cirrhotics and their informal caregivers. Methods A total of 200 subjects: 100 cirrhotics (70 men, 53% decompensated) and 100 caregivers were administered the PROMIS and legacy instruments [Sickness Impact Profile (SIP), Beck depression/anxiety inventories, Pittsburgh Sleep-Quality Index (PSQI) and Epworth Sleepiness scale (ESS)] concurrently. Both legacy and PROMIS results for patients were compared with caregivers and US norms. These were also compared between compensated and decompensated patients. Preference for SIP or PROMIS was inquired of a selected group ( n = 70, 50% patients). Test - retest reliability was assessed in another group of 20 patients. Results Patients had significant impairment on all PROMIS domains apart from anger and anxiety compared with caregivers and US norms ( P < 0.02 to <0.0001). Decompensated patients had significantly worse sleep, pain, social and physical function scores compared with compensated ones, similar to legacy instruments. There was a statistically significant correlation between PROMIS and their corresponding legacy instruments. The majority (71%) preferred PROMIS over SIP. PROMIS tools had significant test - retest reliability (ICC range 0.759-0.985) when administered 12 ± 6 days apart. Conclusion PROMIS computerised adaptive testing tools had significant concurrent and discriminant validity, test - retest reliability and subject preference for assessing HRQOL in cirrhotic patients. [ABSTRACT FROM AUTHOR]