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1.
Br J Dermatol ; 190(5): 718-728, 2024 Apr 17.
Artigo em Inglês | MEDLINE | ID: mdl-38064666

RESUMO

BACKGROUND: Existing dermatology-specific Patient-Reported Outcome Measures (PROMs) do not fully capture the substantial physical, psychological and social impact of dermatological conditions on patients' lives and are not recommended for use according to the COSMIN criteria. Most were developed with insufficient patient involvement and relied on classical psychometric methods. We are developing the new Patient-Reported Impact of Dermatological Diseases (PRIDD) measure for use in research and clinical practice in partnership with patients. OBJECTIVES: To examine the factor structure of PRIDD, determine the definitive selection of items for each subscale, and establish structural validity and internal consistency through classical and modern psychometric methods. METHODS: Two cross-sectional online surveys were conducted. Adults (≥ 18 years) worldwide living with a dermatological condition were recruited through the membership network of the International Alliance of Dermatology Patient Organizations (GlobalSkin). They completed the PRIDD questionnaire and a demographics questionnaire via an online survey. We examined missing data and distribution of scores for each item. The factor structure was assessed using confirmatory and exploratory factor analysis (Survey 1). Internal consistency was examined using Cronbach's α. Rasch measurement theory analyses were conducted, including iterative assessment of rating scale function, fit to the Rasch model, unidimensionality, reliability, local dependence, targeting and differential item functioning (DIF) (Surveys 1 and 2). RESULTS: Participants in Surveys 1 and 2 numbered 483 and 504 people, respectively. All items had ≤ 3% missing scores and all five response options were used. A four-factor model showed the best fit. PRIDD and all four subscales were internally consistent but showed some misfit to the Rasch measurement model. Adjustments were made to rectify disordered thresholds, remove misfitting items, local dependency and DIF, and improve targeting. The resulting 16-item version and subscales fit the Rasch model, showed no local dependency or DIF at the test level, and were well targeted. CONCLUSIONS: This field test study produced the final PRIDD measure, consisting of 16 items across four domains. The data triangulated and refined the conceptual framework of impact and provide evidence of PRIDD's structural validity and internal consistency. The final step in the development and validation of the PRIDD measure is to test the remaining measurement properties.


Assuntos
Medidas de Resultados Relatados pelo Paciente , Exame Físico , Adulto , Humanos , Estudos Transversais , Reprodutibilidade dos Testes , Psicometria/métodos , Inquéritos e Questionários
2.
Br J Dermatol ; 2024 Jun 27.
Artigo em Inglês | MEDLINE | ID: mdl-38924720

RESUMO

BACKGROUND: Patient-reported outcome measures (PROMs) are crucial for assessing the impact of dermatological conditions on patients' lives, but the existing dermatology-specific PROMs are not recommended for use according to the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN). We developed the Patient-Reported Impact of Dermatological Diseases (PRIDD) measure in partnership with patients. It has strong evidence of content validity, structural validity, internal consistency, acceptability, and feasibility. OBJECTIVES: To test PRIDD's remaining measurement properties and establish the interpretability of scores against the COSMIN criteria using classic and modern psychometric methods. METHODS: A global longitudinal study consisting of two online surveys administered two to four weeks apart. Adults (≥ 18 years) living with a dermatological condition were recruited through the International Alliance of Dermatology Patient Organizations' (GlobalSkin) membership network. Participants completed PRIDD, a demographics questionnaire, and other related measures including the Dermatology Life Quality Index (DLQI). We tested PRIDD's criterion validity, construct validity and responsiveness (Spearman's ρ, independent-samples t-tests and ANOVA), test-retest reliability (interclass correlation coefficient [ICC]), measurement error (Smallest Detectable Change or Limits of Agreement [LoA], distribution-based Minimally Important Change [MIC]), floor and ceiling effects (number of minimum and maximum scores and Person-Item Location Distribution Maps), score bandings (κ coefficient of agreement) and anchor-based MIC. RESULTS: 504 patients with 35 dermatological conditions from 38 countries participated. Criterion validity (ρ = 0.79), construct validity (76% hypotheses met), test-retest validity (ICC = 0.93), and measurement error (LoA = 1.3 < MIC = 4.14) were sufficient. Floor and ceiling effects were in the acceptable range (< 15%). Score bandings were determined (κ = 0.47), however, the anchor-based MIC could not be calculated due to an insufficient anchor. CONCLUSIONS: PRIDD is a valid and reliable tool to evaluate the impact of dermatological disease on patients' lives in research and clinical practice. It is the first dermatology-specific PROM to meet the COSMIN criteria. These results support the value of developing and validating PROMs with a patient-centred approach and using classic and modern psychometric methods. Further testing of responsiveness and MIC, cross-cultural translation, linguistic validation, and global data collection are planned.

3.
J Eur Acad Dermatol Venereol ; 38(7): 1391-1400, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38400660

RESUMO

BACKGROUND: The Global Research on the Impact of Dermatological Diseases (GRIDD) project is developing the new Patient-Reported Impact of Dermatological Diseases (PRIDD) measure. PRIDD measures the impact of dermatological conditions on the patient's life. OBJECTIVES: This study aimed to seek consensus from patients on which items to prioritize for inclusion in PRIDD. METHODS: A modified, two-round Delphi study was conducted. Adults (≥18 years) with dermatological conditions were recruited. The survey consisted of a demographic's questionnaire and 263 potential impact items in six languages. Quantitative data used Likert-type ranking scales and analysed against consensus criteria. Qualitative data collected free text responses for additional feedback and a framework analysis was conducted. RESULTS: 1154 people representing 90 dermatological conditions from 66 countries participated. Items were either removed (n = 79), edited (n = 179) or added (n = 2), based on consensus thresholds and qualitative feedback. Results generated the first draft of PRIDD with 27 items across five impact domains. CONCLUSION: This Delphi study resulted in the draft version of PRIDD, ready for psychometric testing. The triangulated data helped refine the existing conceptual framework of impact. PRIDD has since been pilot tested with patients and is currently undergoing psychometric testing.


Assuntos
Técnica Delphi , Medidas de Resultados Relatados pelo Paciente , Dermatopatias , Humanos , Feminino , Masculino , Adulto , Pessoa de Meia-Idade , Consenso , Inquéritos e Questionários , Qualidade de Vida , Idoso , Psicometria
4.
J Asthma ; 60(2): 323-330, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-35230210

RESUMO

CONCLUSIONS: Models representing transitions from all-nebulized to nebulizer-plus-MDI respiratory medications resulted in cost savings, largely from the reduction of labor cost of nebulizer administration with nebs-only treatment. Therefore, transitioning from nebs to MDIs can lead to cost savings and could allow greater opportunities for inhaler education.


Assuntos
Asma , Doença Pulmonar Obstrutiva Crônica , Humanos , Asma/tratamento farmacológico , Pacientes Internados , Redução de Custos , Nebulizadores e Vaporizadores , Inaladores Dosimetrados , Administração por Inalação , Doença Pulmonar Obstrutiva Crônica/tratamento farmacológico
5.
Pediatr Dermatol ; 40(2): 250-257, 2023 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-36443263

RESUMO

BACKGROUND/OBJECTIVES: Patient and caregiver perspectives are critical in understanding dermatologic disease impact, presentation, and management in children. The Pediatric Dermatology Research Alliance (PeDRA) Patient Advisory Committee (PtAC), a group of patient representatives and parents of children with cutaneous disease, pursued a multistep, iterative, consensus-building process to identify comprehensive, high-priority research needs. METHODS: Building on discussions at the 2020 PeDRA Annual Conference, a research prioritization survey was developed and completed by PtAC members. Survey themes were aggregated and workshopped by the PtAC through a series of facilitated calls. Emerging priorities were refined in collaboration with additional PeDRA patient community members at the 2021 PeDRA Annual Conference. Subsequently, a final actionable list was agreed upon. RESULTS: Fourteen PtAC members (86.7% female) representing patients with alopecia areata, atopic dermatitis, vascular birthmarks, congenital melanocytic nevi, ectodermal dysplasias, epidermolysis bullosa, Gorlin syndrome, hidradenitis suppurativa, ichthyosis, pemphigus, psoriasis, Sturge-Weber syndrome, and pachyonychia congenita completed the survey. Following serial PtAC meetings, 60 research needs were identified from five domains: psychosocial challenges, health care navigation/disease management, causes/triggers, treatments to preserve or save life, and treatments to preserve or save quality of life. CONCLUSIONS: Many pediatric dermatology research priorities align across affected communities and may drive meaningful, patient-centric initiatives and investigations.


Assuntos
Alopecia em Áreas , Dermatologia , Criança , Humanos , Feminino , Masculino , Qualidade de Vida , Pesquisa , Assistência Centrada no Paciente
6.
Acta Derm Venereol ; 102: adv00823, 2022 Nov 29.
Artigo em Inglês | MEDLINE | ID: mdl-36065743

RESUMO

Existing patient-reported outcome measures cannot comprehensively capture the full impact of living with a dermatological condition. The aim of this study was to develop a conceptual framework on which to build a new Patient-Reported Impact of Dermatological Diseases (PRIDD) measure. Adults (≥ 18 years of age) living with a dermatological condition, worldwide and/or representatives from a patient organization recruited via a global patient organization network, were invited to an individual or group interview. Data were analyzed thematically. Sixty-five people from 29 countries, representing 29 dermatological conditions, participated. Key themes were: (i) impacts at the individual, organizational and societal levels; (ii) impacts were point-in-time and cumulative; and (iii) impact is a multifaceted construct, with two subthemes (iiia) common impacts and (iiib) psychological and social impacts are most significant. The conceptual framework shows that impact is a multifaceted concept presenting across physical, psychological, social, financial, daily functioning and healthcare, and provides the basis for co-constructing the PRIDD with patients.


Assuntos
Medidas de Resultados Relatados pelo Paciente , Pacientes , Adulto , Humanos , Pesquisa Qualitativa , Qualidade de Vida/psicologia
7.
Acta Derm Venereol ; 101(9): adv00559, 2021 Sep 28.
Artigo em Inglês | MEDLINE | ID: mdl-34263330

RESUMO

By relying on data from existing patient-reported outcome measures of quality of life, the true impact of skin conditions on patients' lives may be underestimated. This study systematically reviewed all dermatology-specific (used across skin conditions) patient-reported outcome measures and makes evidence-based recommendations for their use. The study protocol is registered on PROSPERO (CRD42018108829). PubMed, PsycInfo and CINAHL were searched from inception to 25 June 2018. The Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) criteria were used to assess the measurement properties and methodological quality of studies. A total of 12,925 abstracts were identified. Zero patient-reported outcome measures were assigned to category A (ready for use without further validation), 31 to category B (recommended for use, but only with further validation) and 5 to category C (not recommended for use). There is no gold-standard dermatology-specific patient-reported outcome measure that can be recommended or used without caution. A new measure that can comprehensively capture the impact of dermatological conditions on the patient's life is needed.


Assuntos
Dermatologia , Qualidade de Vida , Consenso , Humanos , Medidas de Resultados Relatados pelo Paciente
8.
Psychol Med ; 50(1): 1-10, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31663847

RESUMO

In the past decade, the links between core types of childhood maltreatment and suicidal acts have become an increasingly important area of investigation. However, no meta-analytic review has examined this relationship in prisoners. We undertook the first systematic meta-analytic review examining the link between childhood maltreatment and suicide attempts in prisoners to redress this important gap. We searched Medline, PsychINFO, Embase, Web of Science and CINAHL from inception until August 2019. Meta-analyses using random effect models were applied, and heterogeneity was quantified using the I2 statistic. Publication bias and risk of bias across studies were assessed. We identified 24 studies comprising 16 586 prisoners. The rates of different types of childhood maltreatment ranged between 29% and 68% [95% confidence interval (CI) 18-81%]. The rate of suicide attempts in prisoners was 23% (95% CI 18-27%). Main results demonstrated that sexual abuse [odds ratio (OR) 2.68, 95% CI 1.86-3.86], physical abuse (OR 2.16, 95% CI 1.60-2.91), emotional abuse (OR 2.70, 95% CI 1.92-3.79), emotional neglect (OR 2.29, 95% CI 1.69-3.10), physical neglect (OR 1.57, 95% CI 1.27-1.94) and combined abuse (OR 3.09, 95% CI 2.14-4.45) were strongly associated with suicide attempts in prisoners. There was an indication of publication bias. Duval and Tweedie's trim-and-fill method was applied, which increased the odds for suicide attempts. Given the high rates of prison suicide deaths and suicide attempts, our findings suggest an urgent need for targeted suicide prevention priorities for prisoners, with a particular focus on ameliorating the effects of childhood traumatic experiences on suicidal prisoners.


Assuntos
Sobreviventes Adultos de Maus-Tratos Infantis/psicologia , Sobreviventes Adultos de Maus-Tratos Infantis/estatística & dados numéricos , Prisioneiros/psicologia , Tentativa de Suicídio/psicologia , Tentativa de Suicídio/estatística & dados numéricos , Adolescente , Adulto , Feminino , Humanos , Masculino , Prisioneiros/estatística & dados numéricos , Adulto Jovem
9.
J Sport Rehabil ; 28(4): 350-353, 2019 May 01.
Artigo em Inglês | MEDLINE | ID: mdl-29364033

RESUMO

Context: College soccer players suffer from hamstring injuries due to inflexibility and repetitive motions involving intense hamstring lengthening and contraction during sport. Although it is a popular intervention for muscular injury, there exists limited evidence of the effects of therapeutic cupping on hamstring flexibility. Objective: To determine the effect of cupping therapy on hamstring flexibility in college soccer players. Design: Cohort design. Setting: Athletic training clinic. Patients: A total of 25, asymptomatic, National Collegiate Athletic Association Division III soccer players (10 males and 15 females; age = 19.4 [1.30] y, height = 175.1 [8.2] cm, and mass = 69.5 [6.6] kg). Intervention(s): A 7-minute therapeutic cupping treatment was delivered to the treatment group. Four 2-in cups were fixed atop trigger point locations within the hamstring muscle bellies of participants' dominant legs. Control group participants received no intervention between pretest and posttest measurements. Main Outcome Measures: Pretest and posttest measurements of hamstring flexibility, using a passive straight leg raise, were performed on both groups. Passive straight leg raise measurements were conducted by blinded examiners using a digital inclinometer. An independent samples t test was used to analyze changes in hamstring flexibility from pretreatment to posttreatment with P values set a priori at .05. Results: An independent samples t test demonstrated no significant difference in change in hamstring flexibility between participants in the treatment group and those in the control group (t23 = -.961, P = .35). Conclusions: The findings of this study demonstrated no statistically significant changes in hamstring flexibility following a cupping treatment.


Assuntos
Terapias Complementares , Elasticidade , Músculos Isquiossurais/fisiologia , Traumatismos da Perna/prevenção & controle , Adolescente , Feminino , Humanos , Masculino , Músculo Esquelético/lesões , Futebol , Adulto Jovem
10.
Klin Monbl Augenheilkd ; 234(5): 679-685, 2017 May.
Artigo em Alemão | MEDLINE | ID: mdl-28505676

RESUMO

Background Ophthalmology, principally, is a very successful subdiscipline in medicine. Nonetheless, there are still unmet medical needs which necessitate translational research. Methods The funding instrument of a Research Unit (RU) of the German Research Foundation (DFG) is presented as exemplified by the RU 2240 at the Department of Ophthalmology at the University of Cologne. Results The Research Unit integrates different research groups working on pathologic ocular inflammation, macrophages/microglia and (lymph)angiogenesis to collaborate in a synergistic way. Rotation positions allow young clinicians to rotate into research labs for a defined period of time. A Research Unit is also a powerful strategic tool to strengthen clinical and experimental ophthalmology at individual medical faculties. Conclusions The funding instrument of a Research Unit is highly suitable for fostering translational research in a medical subdiscipline such as ophthalmology, supporting the next generation of (clinician) scientists in ophthalmology and finding new cures for our patients.


Assuntos
Inibidores da Angiogênese/administração & dosagem , Endoftalmite/tratamento farmacológico , Endoftalmite/imunologia , Imunidade Celular/efeitos dos fármacos , Linfangiogênese/efeitos dos fármacos , Linfangiogênese/imunologia , Pesquisa Translacional Biomédica/tendências , Animais , Modelos Animais de Doenças , Imunidade Celular/imunologia , Imunoterapia/métodos , Resultado do Tratamento
11.
Ophthalmic Res ; 54(1): 6-9, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-25999058

RESUMO

AIMS: To describe the number, type and location of ophthalmic companies and their associated product areas and indications. METHODS: A retrospective, non-patient-based, observational review of ophthalmic pharmaceutical and device companies with a new product in development. Data was compiled by Internet searches. RESULTS: We identified 190 companies currently developing ophthalmic products: 134 (71%) were privately held and 56 (29%) publicly held, while 136 (72%) were in the United States and 53 (28%) were outside the United States. There were 436 total products of which 338 (78%) were pharmaceuticals and 98 (22%) devices. With pharmaceuticals we identified 46 separate indications with age-related macular degeneration (n = 75), glaucoma (n = 52) and dry eye (n = 46) as most common; anti-vascular endothelial growth factor, hormone therapy and anti-inflammatory products were also common classes. With devices there were 30 indications with glaucoma (n = 26), age-related macular degeneration (n = 19) and dry eye (n = 6) as most common; drug delivery, ocular implants and prostheses were less common classes. CONCLUSIONS: Ophthalmology as a specialty is benefited by a wide effort in new medicine and device development. However, a concentration of effort into relatively few indications suggests a potential lack of market analysis and possible difficulty for many companies in commercializing their product.


Assuntos
Aprovação de Equipamentos , Indústria Farmacêutica , Oftalmopatias/terapia , Oftalmologia/organização & administração , Preparações Farmacêuticas , França , Israel , Estudos Retrospectivos , Suíça , Reino Unido , Estados Unidos
12.
J Gambl Stud ; 30(2): 335-47, 2014 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-23283635

RESUMO

The gambling functional assessment-revised (GFA-R) was designed to assess whether the respondent's gambling was maintained by positive reinforcement or escape. The present study attempted to validate the GFA-R's psychometric properties using United Kingdom (UK) university students and to compare the results to those from a sample of American university students. Two hundred seventy four UK students completed the GFA-R, and 153 also completed the South Oaks gambling screen (SOGS). Two hundred one United States (US) university students completed both measures. A confirmatory factor analysis indicated that the original model of the GFA-R provided an excellent fit for the UK data and internal consistency was high. These outcomes were similar, if not superior, to those from the US sample. SOGS scores strongly correlated with GFA-R escape subscale scores in both samples, replicating previous results. These findings indicate that the GFA-R is a valid measure for use in the UK, which is potentially useful to both practitioners and researchers. They also suggest that the strong relationship between endorsing gambling as an escape and measures of disordered gambling may be ubiquitous.


Assuntos
Jogo de Azar/psicologia , Estudantes/psicologia , Inquéritos e Questionários , Adolescente , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Psicometria , Reforço Psicológico , Reprodutibilidade dos Testes , Estudantes/estatística & dados numéricos , Reino Unido , Estados Unidos , Universidades , Adulto Jovem
13.
J Sex Med ; 10(8): 2121-4, 2013 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-22429501

RESUMO

INTRODUCTION: Reports of postcoital vaginal rupture in the literature are limited to cases involving women who are postmenopausal, have recently undergone pelvic surgery, or have suffered genitourinary trauma. AIM: We report a case of postcoital vaginal rupture in a 23-year-old woman with no prior surgical history who complained of acute onset, severe vaginal pain after consensual intercourse. RESULTS: Examination under anesthesia revealed a 6-cm laceration of the posterior fornix, which extended into the abdominal cavity. The laceration was repaired using a combined vaginal and laparoscopic approach. CONCLUSIONS: Coitus-induced vaginal rupture in a reproductive aged woman with no prior pelvic surgery or other risk factors is a rare clinical presentation. Prior reports of rupture in premenopausal women have recommended repair via laparotomy. This case documents successful transvaginal and laparoscopic repair, and reviews the etiological mechanisms for coitus-induced injury.


Assuntos
Coito , Vagina/lesões , Vagina/cirurgia , Adulto , Feminino , Humanos , Lacerações/etiologia , Ruptura/etiologia , Ruptura/cirurgia
14.
Int J Dev Disabil ; 69(1): 101-110, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36743319

RESUMO

Promoting choice is a defining value guiding Positive Behavior Support (PBS) models for serving individuals with intellectual and/or developmental disabilities (IDD). The ability to make independent choices is of paramount importance to self-advocacy and self-determination. Promoting choice is also an essential commitment of trauma-informed care (TIC) in the provision of services to vulnerable individuals, as trauma often involves experiences in which an individual has no control over aversive events that occur, and choice-making opportunities can empower traumatized individuals to regain control over the environments they routinely encounter. However, incorporating meaningful choice making into behavioral programming is often more difficult than it seems. We synthesize the relevant, contemporary literature to provide professionals with actionable suggestions for incorporating choice making into everyday behavioral services. After summarizing the importance of promoting choice into behavioral services based on the values that define both PBS and TIC frameworks, we (a) offer a behavior-analytic interpretation of the skill of making choices, (b) synthesize key literature on how to teach choice making skills, (c) provide recommendations for the situations within one's care in which choice-making opportunities may be most beneficial, and (d) discuss some of the barriers and potential solutions to incorporating choice-making opportunities for individuals with IDD.

15.
Q J Exp Psychol (Hove) ; : 17470218231210446, 2023 Nov 29.
Artigo em Inglês | MEDLINE | ID: mdl-37864497

RESUMO

Errorless learning strategies such as stimulus fading and stimulus shaping are commonly used to teach complex skills like categorisation and concept formation. Despite widespread use, very few studies have explored the comparative effectiveness of these procedures in well-controlled analyses. The vast majority of existing studies have been undertaken with clinical populations and have involved small numbers of participants (e.g., Single-case designs). The present study sought to compare stimulus fading, stimulus shaping, and trial-and-error learning in a perceptual categorisation task. In Experiment 1, we found robust benefits of stimulus shaping when compared to stimulus fading or trial-and-error learning on measures of initial acquisition of discrimination and one measure of stimulus generalisation. These findings were replicated in a second experiment in which the dimension of fading/shaping was changed from a modification of the comparison stimuli (S-) to a modification of the target stimulus (S +). We discuss the implications of our findings for the selection of errorless learning strategies in clinical settings.

16.
Front Med (Lausanne) ; 10: 1020523, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37215711

RESUMO

Background: The Global Research on the Impact of Dermatological Diseases (GRIDD) team is developing the new Patient-Reported Impact of Dermatological Diseases (PRIDD) measure of the impact of dermatological conditions on the patient's life, in partnership with patients. To develop PRIDD, we conducted a systematic review, followed by a qualitative interview study with 68 patients worldwide and subsequently a global Delphi survey of 1,154 patients to ensure PRIDD items were meaningful and important to patients. Objective: To pilot test PRIDD with patients with dermatological conditions, focusing on its content validity (comprehensiveness, comprehensibility, and relevance), acceptability, and feasibility. Methods: We conducted a theory-led qualitative study using the Three-Step Test-Interview method of cognitive interviewing. Three rounds of semi-structured interviews were conducted online. Adults (≥ 18 years) living with a dermatological condition and who spoke English sufficiently to take part in the interview were recruited through the International Alliance of Dermatology Patient Organizations' (GlobalSkin) global membership network. The topic guide met the gold-standard COSMIN (Consensus-based Standards for the Selection of Health Measurement Instruments) standards for cognitive interviewing. Analysis followed the thematic analytical model of cognitive interviewing. Results: Twelve people (58% male) representing six dermatological conditions from four countries participated. Overall, patients found PRIDD to be comprehensible, comprehensive, relevant, acceptable, and feasible. Participants were able to discern the conceptual framework domains from the items. Feedback resulted in: the recall period being extended from 1 week to 1 month; removal of the 'not relevant' response option; and changes to the instructions and item ordering and wording to improve clarity and increase respondents' confidence in their ability to respond. These evidence-based adjustments resulted in a 26-item version of PRIDD. Conclusion: This study met the gold-standard COSMIN criteria for the pilot testing of health measurement instruments. The data triangulated our previous findings, in particular the conceptual framework of impact. Our findings illuminate how patients understand and respond to PRIDD and other patient-reported measurement instruments. The results of comprehensibility, comprehensiveness, relevance, acceptability, and feasibility of PRIDD provide evidence of content validity from the target population. The next step in the development and validation of PRIDD is psychometric testing.

17.
Ther Adv Rare Dis ; 4: 26330040231188979, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37529076

RESUMO

Background: The International Rare Diseases Research Consortium (IRDiRC) is an international initiative that aims to use research to facilitate rapid diagnosis and treatment of rare diseases. Objective: IRDiRC launched the Chrysalis Task Force to identify key financial and nonfinancial factors that make rare disease research and development attractive to companies. Methods: The Chrysalis Task Force was comprised of thought leaders from companies, patient advocacy groups, regulatory agencies, and research funders. The Task Force created a survey that was distributed to companies of different sizes with varied investment portfolios and interests in rare disease research. Based on the survey results, the Task Force then conducted targeted interviews. Results: The survey and interview respondents identified several factors that make rare disease research and development attractive (e.g. a good understanding of the underlying biology) as well as barriers (e.g. absence of an advocacy organization representing the affected community's needs). The concept of Return On Investment allowed the exploration of factors that were weighed differently by survey and interview respondents, depending on a number of intrinsic and extrinsic issues. Conclusions: The Chrysalis Task Force identified factors attributable to rare disease research and development that may be of interest to and actionable by funders, academic researchers, patients and their families, companies, regulators, and payers in the medium term to short term. By addressing the identified challenges, involved parties may seek solutions to significantly advance the research and development of treatments for rare diseases.


Making rare disease research attractive to companies The International Rare Diseases Research Consortium (IRDiRC) is an international initiative that aims to speed the diagnosis and treatment of rare diseases through research. The IRDiRC Chrysalis Task Force, comprised of thought leaders from companies, patient advocacy groups, regulatory agencies, and research funders, identified key factors that make rare disease research and development attractive to companies. The Task Force distributed a survey to companies with varied investment portfolios and interests in rare disease research, followed by in-depth interviews based on the survey results. The survey and interview respondents identified both attractive factors and barriers to rare disease research and development. The concept of Return On Investment was used to frame discussion of factors that companies weighed differently, depending on a number of issues that were a function of both the company itself and outside factors. The identified challenges can be addressed by funders, academic researchers, patients and their families, companies, regulators, and payers, which hopefully will lead to significant advances in the research and development of treatments for rare diseases.

18.
J Appl Behav Anal ; 55(1): 40-61, 2022 02.
Artigo em Inglês | MEDLINE | ID: mdl-34525220

RESUMO

Despite a growing acknowledgement of the importance of understanding the impacts of trauma on therapeutic approaches across human service disciplines, discussions of trauma have been relatively infrequent in the behavior analytic literature. In this paper, we delineate some of the barriers to discussing and investigating trauma in applied behavior analysis (ABA) and describe how the core commitments of trauma-informed care could be applied to behavior analysis. We then provide some examples of how trauma-informed care might be incorporated into ABA practice. We conclude by suggesting opportunities to approach trauma as a viable avenue for behavior analytic research and argue that omitting trauma-informed care from ABA could be detrimental not only to the public perception of ABA, but to the effectiveness of our assessment and treatment procedures.

19.
Injury ; : 1709-1714, 2021 May 06.
Artigo em Inglês | MEDLINE | ID: mdl-34020782

RESUMO

OBJECTIVES: A cross-sectional analysis of orthopedic trauma randomized controlled trial (RCT) abstracts to assess the frequency and manifestations of spin, the misrepresentation or distortion of research findings, in orthopedic trauma clinical trials. METHODS: The top 5 orthopedic trauma journals were searched from January 1, 2012, to December 31, 2017. RCTs with nonsignificant endpoints (p > .05) were analyzed for spin in the abstract. The primary endpoint of our investigation was the frequency and type of spin. The secondary endpoint was to assess whether funding source was associated with the presence of spin. Due to the low reporting of funding sources no statistics were able to be computed for this outcome. RESULTS: Our PubMed search yielded 517 articles. Primary screening excluded 303 articles, and full text evaluation excluded an additional 161. Overall, 53 articles were included. Spin was identified in 35 of the 53 (66.0%) abstracts analyzed. Evidence of spin was found in 21 (39.6%) abstract results sections and 22 (41.5%) abstract conclusion sections. Of the 21 RCTs reporting a clinical trial registry, 3 (14.3%) had evidence of selective reporting bias. CONCLUSIONS: Orthopedic trauma RCTs from highly ranked journals with nonsignificant endpoints published from 2012 to 2017 frequently have spin in their abstracts. Abstracts with evidence of spin may influence a reader's perception of new drugs or procedures. In orthopedic trauma, the implications of spin may affect the treatment of patients with orthopedic trauma, so efforts to mitigate spin in RCT abstracts must be prioritized.

20.
JAMA Netw Open ; 3(8): e2012563, 2020 08 03.
Artigo em Inglês | MEDLINE | ID: mdl-32756929

RESUMO

Importance: Children and young people's reports of experiences of adverse childhood events have increased in recent years, and this trend has been associated with an elevated risk for suicide behaviors. However, a systematic review and meta-analysis is needed to confirm the significance of this association in young people. Objective: To quantify the association between core types of childhood maltreatment, including sexual, physical, and emotional abuse and/or neglect and suicide behaviors in children and young adults. Data Sources: Medline, PsychInfo, Embase, Web of Science, and CINAHL (Cumulative Index to Nursing and Allied Health) databases were searched from January 1, 1980, until December 31, 2019. The reference lists of all the included studies were also checked. Study Selection: Quantitative studies that focused on the association between core types of childhood abuse and/or neglect and suicide ideation, plans, and attempts. Data Extraction and Synthesis: Data were extracted by 2 independent raters. Publication bias and risk of bias across studies were assessed. Meta-analyses using random-effect models were applied, and heterogeneity was quantified using the I2 statistic. Data were analyzed from January to May 2020 in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) and Meta-analysis of Observational Studies in Epidemiology (MOOSE) reporting guidelines. Main Outcomes and Measures: The association between core types of childhood maltreatment and suicide behaviors. Results: Seventy-nine studies with 337 185 young individuals (mean [SD] age, 15.67 [2.11] years; 63.19% female) were included. The findings demonstrated that sexual abuse (odds ratio [OR], 3.41; 95% CI, 2.90-4.00), physical abuse (OR, 2.18; 95% CI, 1.75-2.71), emotional abuse (OR, 2.21; 95% CI, 1.37-3.57), emotional neglect (OR, 1.93; 95% CI, 1.36-2.74), physical neglect (OR, 1.79; 95% CI, 1.27-2.53), and combined abuse (OR, 3.38; 95% CI, 2.09-5.47) were significantly associated with higher rates of suicide attempts. Core types of childhood maltreatment were also associated with as much as 2.5-fold greater odds for suicide ideation, and sexual abuse with a 4.0-fold increase for suicide plans. Studies based on community samples (ß [SE] = -1.68 [0.79]; P = .04) or with lower methodological quality (ß [SE] = -2.86 [1.30]; P = .03) were associated more strongly with suicide attempts in those reporting experiences of sexual abuse, whereas young age was associated with both suicide attempts (ß [SE] = -0.59 [0.27]; P = .03) and ideation (ß [SE] = -0.41 [0.18]; P = .03). Conclusions and Relevance: These findings suggest that policy actions should focus on raising public awareness and offering proactive suicide prevention therapies for children and young adults who have experienced abuse and/or neglect.


Assuntos
Maus-Tratos Infantis/psicologia , Maus-Tratos Infantis/estatística & dados numéricos , Ideação Suicida , Suicídio/estatística & dados numéricos , Adolescente , Feminino , Humanos , Masculino
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