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The use of standardized outcome measures is essential for best clinical practice by hand therapists to determine patient status, progress, and the outcome of interventions. A better understanding of current patient-reported outcome (PRO) use in hand and upper extremity practice is warranted. This study sought to understand what outcome measures are being used in clinical practice, how they are being used, and the perceived usefulness of PROs by active members of the American Society of Hand Therapists (ASHT). This study employed a cross-sectional design. The web-based survey was distributed through Qualtrics (Qualtrics, Salt Lake City, Utah) to active members of ASHT with an email address on file. The survey consisted of multiple choice and open-ended questions. A total of 348 members responded to the survey. Seven hundred thirty-two different outcome measures were reported to be used by the hand therapist respondents. The most used outcome measure was Quick DASH by 38% of the respondents. Two hundred seventy-five (88%) indicated that their workplace advocated the use of PROs. Most respondents indicated that there were not constraints preventing the use of a PRO. Few therapists respondents use a psychosocial PRO in clinical practice. Most of the hand therapist respondents to our survey use a PRO and discuss the results with their clients. The Quick DASH was the PRO used most often by hand therapists. Only a few hand therapists use a psychosocial tool to measure patient status in clinical practice. • Over 700 different PROs were reported to be used by the hand therapist respondents. • The most used outcome measure was Quick DASH. • Few therapist respondents use a psychosocial PRO in clinical practice. [ABSTRACT FROM AUTHOR]

This study determined the frequency and impact of symptoms on quality of life in patients diagnosed with limb girdle muscular dystrophy (LGMD). Participants with a diagnosis of LGMD in registries based at the Coalition to Cure Calpain-3, the Jain foundation, and the Global FKRP Registry competed a survey to report the frequency and relative impact of themes and symptoms of LGMD. Frequency, mean impact, and population impact scores were calculated, and responses were categorized by age, symptom duration, gender, employment status, use of assistive devices, and LGMD subtypes. 134 participants completed the survey. The most prevalent themes included an inability to do activities (100%), limitation with mobility (99.3%), and lower extremity weakness (97.0%). Themes with the greatest impact were: limitations with mobility, lower extremity weakness, and an inability to do activities. Symptom duration and the use of assistive devices were associated with the presence of multiple themes. Employment was associated with the impact of several themes with no differences in frequency. The prevalence and impact of these themes vary in the LMGD population. The most prevalent and impactful themes were related to weakness, but additional concerns related to emotional challenges should also be considered in clinical and research settings.

The National Children's Study (NCS) statistics and item response theory group was tasked with promoting the quality of study measures and analysis. This paper provides an overview of six measurement and statistical considerations for the NCS: (1) Conceptual and Measurement Model; (2) Reliability; (3) Validity; (4) Measurement Invariance; (5) Interpretability of Scores; and (6) Burden of administration. The guidance was based primarily on recommendations of the International Society of Quality of Life Research.

Introduction: Several studies have highlighted coronavirus disease 2019 (COVID-19)–related disruptions in treatment and care in people living with lung cancer. However, few studies have assessed patient-reported perspectives on treatment disruption. This study aims to report the patient perspectives on the impact of COVID-19, vaccination access, and coverage on people living with lung cancer. Methods: Data are from a larger online longitudinal study being run by a lung cancer nonprofit organization, LUNGevity Foundation. The survey is open to all patients living with lung cancer and their caregivers. These analyses focus on data captured in the COVID-19 module and the vaccine questionnaire. Descriptive statistics were computed for categorical and ordinal variables. Results: Overall, 164 people living with lung cancer completed the COVID-19 module. Of these, 54% reported disruption in access to treatment, appointments, participating in research and clinical trials. Participants living with stage IV disease were likely to be more concerned about COVID-19 (35%) compared with those with stage I, II, and III. More than half (66%) had tested for COVID-19 of this group 88% tested negative. There was a correlation among participants testing positive for COVID-19 and the number of household members who also tested positive for COVID-19. In the sample who completed the vaccine survey, almost all (98%) were vaccinated against COVID-19. When a recommendation came from a health care professional, an oncologist was the most likely referral source (33%). Conclusions: An integrative patient-reported view on the impact of COVID-19 is important for adequate preparation to ensure undisrupted treatment and allocation of resources.

Background: Radiotherapy plays an important role in the management of skull base meningioma. The aim of the study was to investigate patient-reported outcomes. Methods: A questionnaire of 20 items was sent to 192 patients with meningioma of the skull base who have been treated with proton therapy at a single institution. The survey included dichotomous, scaling, and open questions about symptoms, social distancing, rehabilitation, work, reintegration, limitations in recreational activities, as well as daily life activities and correlating diagnoses. Additionally, symptoms were reported retrospectively by the patients at different time points. In total, 128 patients (66.7%) responded. The median age at the time of RT was 55 years (range: 28-91); the majority were female (79%). The median time between the treatment of meningioma and the survey was 38.5 months (range: 7-100). Results: The most common initial symptoms were visual impairment (N=54, 42.2%), dizziness (N=38, 29.7%), and double vision (N=32, 25%). The most limiting symptom in daily life at the time of the survey was fatigue (N=31, 24.2%); a significant proportion of patients reported depression as associated with diagnosis (31.3%). Only 53% of patients reported occupational activity before treatment, this number did not increase with time. Only N= 40 (31.3%) and N=35 (27.3%) patients reported no limitations in daily household chores or recreational activities by the disease and treatment. The course of cognitive function after treatment showed a temporary deterioration with subsequent improvement. Except for the improvement in emotional functioning, most domains showed a temporary deterioration during radiotherapy, still, the values reached after 6 months differed weekly or moderately from the initial values. Conclusion: Besides neurological deficits, patients with skull base meningioma experience a variety of unspecific symptoms, which can be most limiting in daily life. Even successful treatment does not necessarily translate into the alleviation of those symptoms. A greater focus on the characterization of those symptom complexes is necessary. Greater focus on functional structures such as the hippocampus might improve the results. Due to the retrospective character, this study is hypothesis-generating. [ABSTRACT FROM AUTHOR]

BackgroundRadiotherapy plays an important role in the management of skull base meningioma. The aim of the study was to investigate patient-reported outcomes.MethodsA questionnaire of 20 items was sent to 192 patients with meningioma of the skull base who have been treated with proton therapy at a single institution. The survey included dichotomous, scaling, and open questions about symptoms, social distancing, rehabilitation, work, reintegration, limitations in recreational activities, as well as daily life activities and correlating diagnoses. Additionally, symptoms were reported retrospectively by the patients at different time points. In total, 128 patients (66.7%) responded. The median age at the time of RT was 55 years (range: 28-91); the majority were female (79%). The median time between the treatment of meningioma and the survey was 38.5 months (range: 7-100).ResultsThe most common initial symptoms were visual impairment (N=54, 42.2%), dizziness (N=38, 29.7%), and double vision (N=32, 25%). The most limiting symptom in daily life at the time of the survey was fatigue (N=31, 24.2%); a significant proportion of patients reported depression as associated with diagnosis (31.3%). Only 53% of patients reported occupational activity before treatment, this number did not increase with time. Only N= 40 (31.3%) and N=35 (27.3%) patients reported no limitations in daily household chores or recreational activities by the disease and treatment. The course of cognitive function after treatment showed a temporary deterioration with subsequent improvement. Except for the improvement in emotional functioning, most domains showed a temporary deterioration during radiotherapy, still, the values reached after 6 months differed weekly or moderately from the initial values.ConclusionBesides neurological deficits, patients with skull base meningioma experience a variety of unspecific symptoms, which can be most limiting in daily life. Even successful treatment does not necessarily translate into the alleviation of those symptoms. A greater focus on the characterization of those symptom complexes is necessary. Greater focus on functional structures such as the hippocampus might improve the results. Due to the retrospective character, this study is hypothesis-generating.

Objectives: Cervical nerve root compression can lead to radiculopathy in the arm. Some studies have reported low accuracy in determining the responsible nerve root in both cervical and lumbar regions. This prospective, observational, pragmatic study aimed to determine the accuracy of the clinical evaluation relative to magnetic resonance imaging (MRI) findings in patients with arm radiculopathy. Methods: Patients with neck pain and neck‐related arm pain referred to a spine unit underwent a standard clinical neurological examination and cervical spine MRI. The clinical examination required a judgment of the most likely cervical root involved, including the side. The Interobserver reproducibility was tested. Using MRI, the most likely nerve root involved according to radiology was assessed. Results: Eighty‐three patients met the inclusion criteria. The Interobserver reproducibility between clinical evaluators was 58%, with a modest κ coefficient (0.33, 95% confidence interval [CI]: 0.18–0.47) classified only as "fair agreement." Only 31% (95% CI: 22–42) of the 83 patients exhibited full agreement regarding the suspected cervical root as assessed via the clinical evaluation and MRI. In another 28% (95% CI: 18–39), the clinical evaluation identified an adjacent level to that identified on MRI. Conclusions: In cervical radiculopathy, the clinical‐neurological examination diagnosed the same in 31% or an adjacent cervical root in 28% of the patients in relation to the most affected cervical root on MRI. [ABSTRACT FROM AUTHOR]

Background: There is a global emphasis on expanding data collection for joint replacement procedures beyond implant attributes and progression to revision surgery. Patient-reported outcome measures (PROMs) are increasingly considered as an important measure of surgical outcomes from a patient's perspective. However, a major limitation preventing wider use of PROMs data in national data collection has been the inability to systematically collect and share electronic information with relevant stakeholders in a comprehensive and financially sustainable manner. Objective: This study reports on the development of an electronic data capture and reporting system by a national registry for the collection of PROMs and the processes used to identify and overcome barriers to implementation and uptake. The study also aims to provide a cost breakdown of establishing and maintaining a nationwide electronic PROMs program. Methods: Between 2018 and 2020, 3 governance and advisory committees were established to develop and implement a PROMs pilot program nested within a nationwide joint replacement registry. The program involved electronic collection of preoperative and 6-month postoperative data for hip, knee, or shoulder replacement surgery from 44 Australian hospitals. Resource requirements for the program included a project manager, software developers, data manager, and statistician. An online platform was tested, refined, and implemented for electronic PROMs collection with scalability considered for future expansion to all Australian hospitals and additional data fields. Technical capabilities included different access for multiple user types, patient registration, automatic reminders via SMS text messages and email, online consent, and patient outcome real-time dashboards accessible for different user groups (surgeons, patients, hospitals, and project stakeholders). Results: During the PROMs pilot period there were 19,699 primary procedures undertaken with 10,204 registered procedures in the electronic system. This equated to 51.80% of people who had a joint replacement at participating hospitals during this period. Patient registration and data collection were efficient (20-30 seconds and 10-12 minutes, respectively). Engagement with the reporting dashboards (as a proportion of those who viewed their dashboard) varied by user group: 197/277 (71.1%) hospital administrators, 68/129 (52.7%) project stakeholders, 177/391 (45.3%) surgeons, and 1138/8840 patients (12.9%). Cost analysis determined an overall cost per patient of Aus $7-15 (approximately US $5-12) for 2 PROMs collections per joint replacement procedure once the program was established. Conclusions: Successful implementation of an orthopedic PROMs program with planned scalability for a broader national rollout requires significant funding and staffing resources. However, this expenditure can be considered worthwhile, given that collection and reporting of PROMs can drive health care improvement processes. Further consideration of strategies to improve stakeholder engagement with electronic reporting dashboards (particularly for patients and surgeons) will be critical to the ongoing success of a national PROMs program. [ABSTRACT FROM AUTHOR]

Medical students who are learning English as a foreign language (EFL) need to master the ability to write professional reports. Several studies have focused on professional writing in the context of English as a second language (ESL) with advanced learners, but lower-intermediate EFL learners have yet to be examined. This study aimed to implement an exemplar-based genre instruction programme to examine its effectiveness in terms of improving Saudi EFL learners' ability to write patient reports. The study consisted of two phases: analysis of the moves/steps of patient reports and exemplar-based genre instruction. First, the moves/steps in 30 authentic patient reports were analysed to build the framework which was then compared to another framework based on the work of Bench et al. (2014). Second, an exemplarbased genre instruction programme was implemented over six weeks with 36 EFL Saudi medical learners, and the outcomes were evaluated. The findings revealed that increased genre awareness improved the quality of learners' writing, particularly their grammar and vocabulary. Teachers of English for specific purposes (ESP) may need to focus on increasing learners' awareness of the medical-report genre's lexico-grammatical features in addition to its moves. [ABSTRACT FROM AUTHOR]

Abstract Background Affective disorders, such as major depressive (MDD), bipolar I (BD I) and II (BD II) disorders, are overlapped at a continuum, but their exact loci are not clear. The self-reports from patients with affective disorders might help to clarify this issue. Methods We invited 738 healthy volunteers, 207 individuals with BD I, 265 BD II, and 192 MDD to answer a 79 item-MATRIX about on-going affective states. Results In study 1, all 1402 participants were divided random-evenly and gender-balanced into two subsamples; one subsample was used for exploratory factor analysis, and another for confirmatory factor analysis. A structure-validated inventory with six domains of Overactivation, Psychomotor Acceleration, Distraction/ Impulsivity, Hopelessness, Retardation, and Suicide Tendency, was developed. In study 2, among the four groups, MDD scored the highest on Retardation, Hopelessness and Suicide Tendency, whereas BD I on Distraction/ Impulsivity and Overactivation. Conclusion Our patients confirmed the affective continuum from Suicide Tendency to Overactivation, and described the different loci of MDD, BD I and BD II on this continuum.

Hajjul Kamil,1 R Rachmah,1 Elly Wardani,1 Catrin Björvell2 1Nursing Leadership and Management Department, Faculty of Nursing, Universitas Syiah Kuala, Banda Aceh, Indonesia; 2Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, SwedenCorrespondence: Elly WardaniNursing Leadership and Management Department, Faculty of Nursing, Universitas Syiah Kuala, Banda Aceh, IndonesiaEmail ellywardani@unsyiah.ac.idIntroduction: Hospitals in Indonesia are obligated to implement Integrated Patient Progress Notes (IPPNs), also known as the “Catatan Perkembangan Pasien Terintegrasi”. A progress note contains the entire interaction between patients and health professionals, including physicians, nurses, pharmacists, dietitians, and physiotherapists. However, since the first launch in 2012, obstacles and problems in completing this integrated documentation remains nationwide.Aim: The objective of this investigation was to identify health professional’s perspectives on obstacles and problems using IPPNs and facilitators that may optimize their use.Methods: Five focus group discussions (FGDs) involving 37 participants took place. All FGDs were recorded, translated, and transcribed verbatim. A thematic analysis was used to interpret the data.Results: The thematic analysis of the material revealed three main categories for each of the two topics; Topic 1. Perceived problems hindering integrated documentation: lack of supervision, competence, workload; topic 2: perceived strategies to optimize integrated documentation: organizational support, joint practices, integrating technology with IPPN.Conclusion: The results indicate that health professionals see the importance of using IPPNs but only if implemented with educational and organizational support and that the use of an electronic patient record may be more effective than a paper record. To continue the implementation of IPPNs, it is suggested that it is preceded by educational and organizational support.Keywords: integrated documentation, Indonesia, patient report, safety, service quality

The National Children's Study (NCS) statistics and item response theory group was tasked with promoting the quality of study measures and analysis. This paper provides an overview of six measurement and statistical considerations for the NCS: (1) Conceptual and Measurement Model; (2) Reliability; (3) Validity; (4) Measurement Invariance; (5) Interpretability of Scores; and (6) Burden of administration. The guidance was based primarily on recommendations of the International Society of Quality of Life Research.

Purpose: To assess child and family engagement in the selection of patient-reported outcomes for clinical studies/clinical settings and development of patient-reported outcome measures (PROMs)/patient-reported experience measures (PREMs) across the pediatric literature.Methods: Databases were reviewed: EMBASE, MEDLINE, and PsycINFO. Articles published from December 2009 to September 2018 pertaining to the selection of outcomes or development of PROMs/PREMs for children or families were included. The International Association for Public Participation (IAP2) Spectrum of Public Participation was used to classify levels of engagement across each article; IAP2 plots engagement on a spectrum across five stages (from minimal to most engagement): Inform, Consult, Involve, Collaborate, and Empower.Results: 9019 non-duplicate articles were screened; 36 articles met inclusion criteria, seven studies focused on the selection of outcomes, and 29 studies pertained to PROM/PREM development. Twenty-three articles adhered to 'Involve' level of engagement. Four articles were categorized as 'Collaborate,' seven articles were classified as 'Consult,' and three articles were categorized as 'Inform'.Conclusion: Children and families were sparsely engaged as co-conductors or equal partners in the selection or development of PRO research; involvement remained on the mid-low end of the IAP2 Spectrum. Engaging with children and families as collaborators can improve the patient-centredness, rigour, and applicability of PROM/PREM research. [ABSTRACT FROM AUTHOR]

Purpose: European Patient Advocacy Groups (ePAGs) within the Endo-ERN identified a lack of knowledge about quality of care (QoC) of patients with multiple endocrine neoplasia (MEN). The aim of this study was to identify inequalities in care and to encourage improvements. Methods: The European MEN Alliance (EMENA) developed and conducted a survey, using the European Commissions' EUSurvey platform. Patient groups and healthcare professionals (HCPs) distributed the survey. Results: A total of 288 participants completed the survey (MEN1 n = 203, MEN2 n = 67, MEN3 n = 18) from 18 European countries. The majority of respondents were recruited via patient groups (58%), aged between 41 and 60 years (53%) and were female (67%). All participants reported having been diagnosed on average 5.58 years (95%-CI: 4.45–6.60) after first symptoms occurred. This timeframe was lower in the group with MEN2 (2.97 years, 95%-CI: 1.37–4.57). Most of the participants (67%) received their diagnosis by a positive gene test after presenting with one or more MEN-related tumours. Overall QoC was rated as either "good" (43%) or "excellent" (36%). Conclusion: The results of this unique Europe-wide, patient-driven survey on QoC of patients with MEN show that ratings for overall QoC were lower than ratings for different aspects of care. This may be because of the complex nature of care for genetic syndromes. Furthermore, patients who connect with patient groups may be deemed "expert patients" whose answers are not representative of the overall MEN patient community. We hope that Endo-ERN can support further education and training for HCPs based on these results. [ABSTRACT FROM AUTHOR]

Objective: To characterize patient‐reported ideas and concerns about cluster headache, treatment options, and management strategies. Background: Cluster headache patients experience severe pain and often suffer additional consequences from their disease. Patients have identified methods to cope with and combat cluster headache that are not widely known. Methods: Secondary analysis was performed using deidentified data from the online Clusterbusters Medication Use survey, wherein 10 questions allowed for freely written comments. Using mixed‐methods techniques, neurologists with expertise in headache medicine identified themes from these comments. Subgroup analysis sought to identify variables associated with specific themes. Results: Among 2274 free‐text responses from 493 adult participants, 23 themes were identified. Themes commonly discussed in the literature included such topics as "nothing worked" (24.7%, 122/493), "side effects" (12.8%, 63/493), and difficulties with "access/cost" (2.4%, 12/493). Less widely recognized themes included the use of "illicit substances" (35.5%, 175/493) and "vitamins/supplements" (12.2%, 60/493) in disease management. Lesser‐known themes included "coffee" (5.3%, 26/493) and "exercise/physical activity" (4.7%, 23/493). Using strict significance criteria, no subgroup was associated with any theme. Several poignant quotes highlighted patient thoughts and experiences. Conclusions: This mixed‐methods analysis identified challenges endured by cluster headache patients, as well as a variety of patient‐directed disease management approaches. The volunteered information spotlights pharmacological, physiological, and psychological aspects of cluster headache that warrant further exploratory and interventional investigation. [ABSTRACT FROM AUTHOR]

Objectives: Although comorbidities play an essential role in risk adjustment and outcomes measurement, there is little consensus regarding the best source of this data. The aim of this study was to identify general patient-reported morbidity instruments and their measurement properties.Methods: A systematic review was conducted using multiple electronic databases (Embase, Medline, Cochrane Central, and Web of Science) from inception to March 2018. Articles focusing primarily on the development or subsequent validation of a patient-reported morbidity instrument were included. After including relevant articles, the measurement properties of each morbidity instrument were extracted by 2 investigators for narrative synthesis.Results: A total of 1005 articles were screened, of which 34 eligible articles were ultimately included. The most widely assessed instruments were the Self-Reported Charlson Comorbidity Index (n = 7), the Self-Administered Comorbidity Questionnaire (n = 3), and the Disease Burden Morbidity Assessment (n = 3). The most commonly included conditions were diabetes, hypertension, and myocardial infarction. Studies demonstrated substantial variability in item-level reliability versus the gold standard medical record review (κ range 0.66-0.86), meaning that the accuracy of the self-reported comorbidity data is dependent on the selected morbidity.Conclusions: The Self-Reported Charlson Comorbidity Index and the Self-Administered Comorbidity Questionnaire were the most frequently cited instruments. Significant variability was observed in reliability per comorbid condition of patient-reported morbidity questionnaires. Further research is needed to determine whether patient-reported morbidity data should be used to bolster medical records data or serve as a stand-alone entity when risk adjusting observational outcomes data. [ABSTRACT FROM AUTHOR]

Introduction: Practical adherence barriers (e.g., medication frequency) are generally more amenable to intervention than perceptual barriers (e.g., beliefs). Measures which assess adherence barriers exist, however these tend to measure a mix of factors. There is a need to identify what practical barriers are captured by current measures. Aim: To identify and synthesise the practical adherence barriers which are assessed by currently available self- or observer-report adherence measures. Methods: A search for systematic reviews of self- or observer-report report adherence measures was conducted. Three electronic databases (Embase, Ovid Medline, and PsycInfo) were searched using terms based on adherence, adherence barriers and measures. Systematic reviews reporting on adherence measures which included at least one self- or observer-report questionnaire or scale were included. Adherence measures were extracted and coded on whether they addressed perceptual or practical barriers, or both. Practical items were then analysed thematically. Results: Following screening of 272 initial abstracts, 20 full-text papers were reviewed. Four were excluded after full-text review, leaving 16 systematic reviews for data extraction. From these, 187 different adherence measures were extracted and coded, and 23 unique measures were identified as assessing practical barriers and included in the final analysis. Seven key themes were identified: formulation; instructions for use; issues with remembering; capability—knowledge and skills; financial; medication supply and social environment. Conclusion: Existing adherence measures capture a variety of practical barriers which can be grouped into seven categories. These findings may be used to inform the development of a measure of practical adherence barriers. [ABSTRACT FROM AUTHOR]

Background: Affective disorders, such as major depressive (MDD), bipolar I (BD I) and II (BD II) disorders, are overlapped at a continuum, but their exact loci are not clear. The self-reports from patients with affective disorders might help to clarify this issue. Methods: We invited 738 healthy volunteers, 207 individuals with BD I, 265 BD II, and 192 MDD to answer a 79 item-MATRIX about on-going affective states. Results: In study 1, all 1402 participants were divided random-evenly and gender-balanced into two subsamples; one subsample was used for exploratory factor analysis, and another for confirmatory factor analysis. A structure-validated inventory with six domains of Overactivation, Psychomotor Acceleration, Distraction/ Impulsivity, Hopelessness, Retardation, and Suicide Tendency, was developed. In study 2, among the four groups, MDD scored the highest on Retardation, Hopelessness and Suicide Tendency, whereas BD I on Distraction/ Impulsivity and Overactivation. Conclusion: Our patients confirmed the affective continuum from Suicide Tendency to Overactivation, and described the different loci of MDD, BD I and BD II on this continuum. [ABSTRACT FROM AUTHOR]

Objective: The objective of this study is to identify variables that describe nocturia-related bother in a sample of community-dwelling individuals. Materials and methods: Community-dwelling individuals age 40 years and older who woke to pass urine at night completed an online questionnaire. Participants were asked (i) their top three concerns in relation to nocturia, (ii) to agree or disagree with a list of statements related to bother, and (iii) to complete the Nocturia Impact Diary items. Fisher exact test and the Mann–Whitney U test were used to assess whether differences in nocturia-related bother existed when comparing participants stratified by nocturia severity. Results: Moderate to extreme nocturia-related bother was described by 56% of the 202 respondents and by 68% of individuals with nocturia two or more times per night. Effects of nocturia, specifically sleep disruption and impact on daytime function, were the most cited concerns. Low nocturia-related health literacy was evident. The sample was younger (83% age <70 years), predominantly female (74%) and nocturia treatment naïve (95%). Conclusion: The study highlights the potential to evaluate patient care based on change in sleep and daytime function rather than solely on nocturia frequency. A suite of patient-reported outcome measures adjunctive to clinical data may have utility in quantifying meaningful change to patients after treatment for nocturia. Level of evidence: Not applicable for this multicentre audit. [ABSTRACT FROM AUTHOR]

Context: Recurrent headaches significantly affect health-related quality of life (HRQOL) in adults; the impact of headache on HRQOL among adolescents is unknown, and the psychometric properties of headache-specific outcomes instruments have not been adequately studied in this population. Objective: To evaluate the psychometric properties of the Headache Impact Test (HIT-6) and Pediatric Migraine Disability Assessment (PedMIDAS) in healthy adolescent athletes. Design: Descriptive survey. Setting: High school athletic training facilities during the fall sports season. Participants: 177 high school athletes (89 males and 88 females). Interventions: A survey consisting of a demographic and concussion-history questionnaire, a graded symptom scale, the HIT-6, and the PedMIDAS. Internal consistency (α), test-retest reliability (rs), Bland-Altman analyses, and the Mann-Whitney U test were used to evaluate psychometric properties and age and gender differences. Main Outcome Measures: The HIT-6 and PedMIDAS item and total scores. Results: Test-retest reliability for the HIT-6 total score was rs = .72, and reliability of individual items ranged from rs = .52 to .67. The test-retest reliability for the PedMIDAS total score was rs = .61, and reliability of individual items ranged from rs = .23 to .62. Both scales demonstrated acceptable internal consistency: HIT-6 α = .89-.90 and PedMIDAS α = .71-.75. Conclusions: The authors found moderate test-retest reliability for the HIT-6 and the PedMIDAS in a healthy adolescent athlete population. Research on the applicability and utility of the HIT-6 and PedMIDAS in concussed adolescents is warranted. [ABSTRACT FROM AUTHOR]

Patient Scenario: An adolescent female youth soccer athlete, with a previous concussion history, suffered a second concussion 4 wk ago. Her postconcussive symptoms are affecting her school performance and social and family life. Clinical Outcomes Assessment: Concussion is typically evaluated via symptoms, cognition, and balance. There is no specific patient-oriented outcomes measure for concussion. Clinicians can choose from a variety of generic and specific outcomes instruments aimed at assessing general health-related quality of life or various concussion symptoms and comorbidities such as headache, migraine, fatigue, mood disturbances, depression, anxiety, and concussion-related symptoms. Clinical Decision Making: The data obtained from patient self-report instruments may not actively help clinicians make return-to-play decisions; however, these scales may be useful in providing information that may help the athlete return to school, work, and social activities. The instruments may also serve to identify issues that may lead to problems down the road, including depression or anxiety, or serve to further explore the nature of an athlete's symptoms. Clinical Bottom Line: Concussion results in numerous symptoms that have the potential to linger and has been associated with depression and anxiety. The use of outcomes scales to assess health-related quality of life and the effect of other symptoms that present with a concussion may allow clinicians to better evaluate the effects of concussion on physical, cognitive, emotional, social, school, and family issues, leading to better and more complete management. [ABSTRACT FROM AUTHOR]

Copyright of Manuelle Medizin is the property of Springer Nature 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.)

Introduction: Myotonic dystrophy (DM) is a chronic, multisystemic, neurological condition. Patients and caregivers are uniquely suited to identify what symptoms are most important and highlight the unmet needs that are most relevant to DM.Methods: We conducted a North American, cross-sectional study of people with DM type-1, congenital DM, and DM type-2 and their family members. We sent patients and caregivers separate surveys to identify and quantitate the issues of greatest importance, examine the differences between groups, and identify the most important challenges experienced by this population.Results: 1,180 people with DM and 402 family members/caregivers responded to the surveys. They reported considerable physical and cognitive symptoms, extensive diagnostic delays, and varying clinical phenotypes on the basis of DM type.Discussion: Marked disease burden and numerous unmet needs exist in DM. These needs vary based on DM type and highlight the complex clinical phenotypes of these neurological disorders. Muscle Nerve 59:457-464, 2019. [ABSTRACT FROM AUTHOR]

Copyright of Der Schmerz is the property of Springer Nature 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.)

Introduction: Several studies have highlighted coronavirus disease 2019 (COVID-19)-related disruptions in treatment and care in people living with lung cancer. However, few studies have assessed patient-reported perspectives on treatment disruption. This study aims to report the patient perspectives on the impact of COVID-19, vaccination access, and coverage on people living with lung cancer., Methods: Data are from a larger online longitudinal study being run by a lung cancer nonprofit organization, LUNGevity Foundation. The survey is open to all patients living with lung cancer and their caregivers. These analyses focus on data captured in the COVID-19 module and the vaccine questionnaire. Descriptive statistics were computed for categorical and ordinal variables., Results: Overall, 164 people living with lung cancer completed the COVID-19 module. Of these, 54% reported disruption in access to treatment, appointments, participating in research and clinical trials. Participants living with stage IV disease were likely to be more concerned about COVID-19 (35%) compared with those with stage I, II, and III. More than half (66%) had tested for COVID-19 of this group 88% tested negative. There was a correlation among participants testing positive for COVID-19 and the number of household members who also tested positive for COVID-19. In the sample who completed the vaccine survey, almost all (98%) were vaccinated against COVID-19. When a recommendation came from a health care professional, an oncologist was the most likely referral source (33%)., Conclusions: An integrative patient-reported view on the impact of COVID-19 is important for adequate preparation to ensure undisrupted treatment and allocation of resources., (© 2023 The Authors.)