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1.
Rev Bras Med Trab ; 22(1): e2022959, 2024.
Article in English | MEDLINE | ID: mdl-39165530

ABSTRACT

Introduction: Occupational skin diseases are a frequently self-reported condition in industrialized countries. However, there are few developed and standardized self-report instruments to screen the population at risk for occupational dermatological diseases. Objectives: Translation and cross-cultural adaptation of the long and short versions of The Nordic Occupational Skin Symptoms Questionnaire into Brazilian Portuguese. Methods: The process of translation and cross-cultural adaptation of the questionnaire was developed following the good practice recommendations of the International Society for Pharmacoeconomics and Outcomes Research. Results: After translation into Brazilian Portuguese, the first reconciled version of the questionnaire was evaluated in a first round of interviews with 28 individuals, including patients with dermatological disease and healthy people. In the first meeting of the study review group, changes were made to 43 questions (75.4%) (e.g., inclusion of definition of terms, reformulation of instructions, and changes to alternative words or synonyms). In the second meeting of the study review group, there were modifications in three questions, creation of the second consensus version in Brazilian Portuguese, and then the back-translation of this version. After the second round of cognitive interviews, which took place with 10 patients, we had the third review group meeting (no modification was made) and definition of the final version of the questionnaire. Conclusions: The short and long versions of the Nordic Occupational Skin Symptoms Questionnaire questionnaire are available in Brazilian Portuguese.


Introdução: As doenças ocupacionais de pele são uma condição frequentemente autorrelatada em países industrializados. No entanto, existem poucos instrumentos de autorrelato desenvolvidos e padronizados para triagem da população de risco para doenças ocupacionais de pele. Objetivos: Tradução e Adaptação Transcultural da versão longa e curta do Nordic Occupational Skin Symptoms Questionnaire para o português brasileiro. Métodos: O processo de tradução e adaptação transcultural do questionário foi desenvolvido seguindo as boas práticas recomendadas pela International Society for Pharmacoeconomics and Outcomes Research. Resultados: Após a tradução para o português brasileiro, a primeira versão conciliada do questionário foi avaliada em uma primeira rodada de entrevistas com 28 indivíduos entre pacientes com doença dermatológica e pessoas saudáveis. Na primeira reunião do grupo de revisão do estudo, foram feitas alterações em 43 questões (75,4%) (por exemplo, inclusão de definição de termos, reformulação de instruções e alteração para palavras alternativas ou sinônimos). Na segunda reunião do grupo de revisão do estudo, houve modificações em três questões, criação da segunda versão de consenso em português brasileiro e, posteriormente, a retrotradução desta versão. Após a segunda rodada de entrevistas cognitivas, que ocorreram com 10 pacientes, tivemos a terceira reunião do grupo de revisão (não houve modificação) e definição da versão final do questionário. Conclusões: As versões curta e longa do questionário Nordic Occupational Skin Symptoms Questionnaire estão disponíveis em português brasileiro.

2.
JMIR Nurs ; 7: e53777, 2024 Aug 21.
Article in English | MEDLINE | ID: mdl-39167789

ABSTRACT

BACKGROUND: Caring profession students require skills and competencies to proficiently use information technologies for providing high-quality and effective care. However, there is a gap in exploring the perceptions and experiences of students in developing virtual care skills within online environments. OBJECTIVE: This study aims to better understand caring professional students' online learning experiences with developing virtual care skills and competencies. METHODS: A sequential explanatory mixed methods approach, integrating both a cross-sectional survey and individual interviews, was used to better understand caring professional students' online learning experiences with developing virtual care skills and competencies. RESULTS: A total of 93 survey and 9 interview participants were drawn from various faculties, including students from education, nursing, medicine, and allied health. These participants identified the barriers, facilitators, principles, and skills related to learning about and delivering virtual care, including teaching methods and educational technologies. CONCLUSIONS: This study contributes to the growing body of educational research on virtual care skills by offering student insights and suggestions for improved teaching and learning strategies in caring professions' programs.


Subject(s)
Clinical Competence , Humans , Cross-Sectional Studies , Female , Male , Surveys and Questionnaires , Adult , Students, Nursing/psychology , Education, Distance/methods , Qualitative Research
3.
Explor Res Clin Soc Pharm ; 15: 100479, 2024 Sep.
Article in English | MEDLINE | ID: mdl-39157071

ABSTRACT

Background: Older patients experience challenges when taking polypharmacy. Studies have applied different interventions to improve adherence to polypharmacy. However, inconsistencies in outcomes have impeded the synthesis of evidence. To generate high-quality studies and selectively report outcomes, a Core Outcome Set (COS) is advocated. Objectives: This study explored stakeholders' perspectives about the challenges older patients face when taking polypharmacy, strategies to overcome each challenge, and outcomes of importance that may contribute to COS development. Methods: Semi-structured interviews were undertaken with academics, healthcare professionals, and public participants. A series of open-ended questions investigated challenges with adherence to polypharmacy in older patients and strategies to overcome these challenges. A list of outcomes (n = 7) compiled from previous studies associated with adherence to polypharmacy was presented to participants for their views. Content analysis was conducted to identify key themes and outcomes proposed by participants. Results: Participants suggested 11 multidimensional healthcare system-related, medication-related, patient-related, and socioeconomic-related challenges and 16 educational and behavioural strategies associated with adherence to polypharmacy in older patients. Participants agreed with the importance of the seven outcomes presented and suggested a further six outcomes they deemed to be important for use in trials aimed at improving adherence to appropriate polypharmacy in older patients. Conclusions: Adherence to polypharmacy was deemed challenging, requiring supportive interventions. A list of 13 outcomes in the context of adherence to appropriate polypharmacy in older patients was identified to inform a future study that will develop a COS for clinical trials targeting interventions to improve adherence to appropriate polypharmacy in older patients.

4.
Trials ; 25(1): 546, 2024 Aug 17.
Article in English | MEDLINE | ID: mdl-39152476

ABSTRACT

BACKGROUND: The number of surgical trials is increasing but such trials can be complex to deliver and pose specific challenges. A multi-centre, Phase III, RCT comparing Posterior Cervical Foraminotomy versus Anterior Cervical Discectomy and Fusion in the Treatment of Cervical Brachialgia (FORVAD Trial) was unable to recruit to target. A rapid qualitative study was conducted during trial closedown to understand the experiences of healthcare professionals who participated in the FORVAD Trial, with the aim of informing future research in this area. METHODS: Semi-structured interviews were conducted with 18 healthcare professionals who had participated in the FORVAD Trial. Interviews explored participants' experiences of the FORVAD trial. A rapid qualitative analysis was conducted, informed by Normalisation Process Theory. RESULTS: Four main themes were generated in the data analysis: (1) individual vs. community equipoise; (2) trial set-up and delivery; (3) identifying and approaching patients; and (4) timing of randomisation. The objectives of the FORVAD trial made sense to participants and they supported the idea that there was clinical or collective equipoise regarding the two FORVAD interventions; however, many surgeons had treatment preferences and lacked individual equipoise. The site which had most recruitment success had adopted a more structured process for identification and recruitment of patients, whereas other sites that adopted more "ad hoc" screening strategies struggled to identify patients. Randomisation on the day of surgery caused both medico-legal and practical concerns at some sites. CONCLUSIONS: Organisation and implementation of a surgical trial in neurosurgery is complex and presents many challenges. Sites often reported low recruitment and discussed the logistical issues of conducting a complex surgical RCT. Future trials in neurosurgery may need to offer more flexibility and time during set-up to maximise opportunities for larger recruitment numbers. Rapid qualitative analysis informed by Normalisation Process Theory was able to quickly identify key issues with trial implementation so rapid qualitative analysis may be a useful approach for teams conducting qualitative research in trials. TRIAL REGISTRATION: ISRCTN, ISRCTN reference: 10,133,661. Registered 23rd November 2018.


Subject(s)
Cervical Vertebrae , Diskectomy , Foraminotomy , Patient Selection , Qualitative Research , Humans , Diskectomy/methods , Cervical Vertebrae/surgery , Foraminotomy/methods , Interviews as Topic , Therapeutic Equipoise , Treatment Outcome , Spinal Fusion/methods , Spinal Fusion/adverse effects , Time Factors
5.
Subst Use Misuse ; : 1-9, 2024 Aug 18.
Article in English | MEDLINE | ID: mdl-39155479

ABSTRACT

BACKGROUND: Patients continue to face challenges accessing medication for opioid use disorder (MOUD) despite attempts to loosen prescribing restrictions and streamline service provision. Past research has mainly focused on potential barriers surrounding prescribing practices for buprenorphine, but has had limited investigation into the role of pharmacies. OBJECTIVE: This study investigates the role of both pharmacists and pharmacies in creating or circumventing barriers to accessing buprenorphine for individuals in Georgia seeking medication for opioid use disorder (MOUD). METHODS: Semi-structured interviews of pharmacists across 12 access and no access pharmacies were used to create a codebook of 179 discreet statements. The (N = 12) 20-35-minute phone interviews included questions addressing substance use, pharmacy practices, treatment, harm reduction, and psychoeducation. RESULTS: Pharmacists widely agreed that opioid use has caused negative effects on community members (N = 11), that buprenorphine formulation stocking decisions are made based on patient needs (N = 11), and that buprenorphine is relatively easy to stock (N = 10). Additionally, respondents generally stated that buprenorphine is a helpful tool for treating opioid use disorder (OUD) (N = 12) but some reported positive experiences while others reported challenging or negative experiences with patients receiving buprenorphine (N = 7). Finally, few (N = 4) pharmacists agreed that they could benefit from extra training despite many asserting that training is important to inform their own practice (N = 8). CONCLUSION: Results from respondents generally show that training may be beneficial for pharmacists to develop an enhanced understanding of addiction and treatment. Enhanced effort to stock different formulations or dosages of buprenorphine and develop relationships with prescribers may increase community access.

6.
Health Place ; 89: 103339, 2024 Aug 13.
Article in English | MEDLINE | ID: mdl-39142006

ABSTRACT

We aimed to understand whether neighbourhood characteristics are associated with movement and social behaviors using walking interviews with 28 community-dwelling older adults (aged 65+). Results indicated support for each component and each relationship in our proposed "Living Environments and Active Aging Framework". Additional themes such as neighbourhoods with children, moving to neighbourhoods with opportunities for social activity and movement, and lingering effects of pandemic closures provided novel insights into the relationship between the living environment (neighbourhood) and active aging. Future work exploring sex and gender effects on these relationships, and work with equity-deserving groups is needed.

7.
Interact J Med Res ; 13: e53513, 2024 Aug 13.
Article in English | MEDLINE | ID: mdl-39137021

ABSTRACT

BACKGROUND: Home medication management has been insufficiently studied, including the factors that impact the development and effectiveness of adherence strategies under both routine and anomalous circumstances. Older adults are a particularly important population to study due to the greater likelihood of taking medication in combination with the desire to "age in place." OBJECTIVE: This interview study aims to understand how older adults develop medication management strategies, identify when and why such strategies succeed or fail, learn more about how older adults think about their medication, and explore interventions that increase medication adherence. METHODS: This study used a qualitative, semistructured interview design to elicit older adults' experiences with home medication management. Overall, 22 participants aged ≥50 years taking 1 to 3 prescription medications were recruited and interviewed. Interview responses were recorded, and thematic, qualitative analysis was performed by reviewing recordings and identifying recurring patterns and themes. Responses were systematically coded, which not only facilitated the identification of these themes but also allowed us to quantify the prevalence of behaviors and perceptions, providing a robust understanding of medication management and medication adherence. RESULTS: Participants reported developing home medication management strategies on their own, with none of the participants receiving guidance from health care providers and 59% (13/22) of the participants using trial and error. The strategies developed by study participants were all unique and generally encompassed prescription medication and vitamins or supplements, with no demarcation between what was prescribed or recommended by a physician and what they selected independently. Participants thought about their medications by their chemical name (10/22, 45%), by the appearance of the pill (8/22, 36%), by the medication's purpose (2/22, 9%), or by the medication's generic name (2/22, 9%). Pill cases (17/22, 77%) were more popular than prescription bottles (5/22, 23%) for storage of daily medication. Most participants (19/22, 86%) stored their pill cases or prescription bottles in visible locations in the home, and those using pill cases varied in their refill routines. Participants used ≥2 routines or objects as triggers to take their medication. Nonadherence was associated with a disruption to their routine. Finally, only 14% (3/22) of the participants used a time-based reminder or alarm, and none of the participants used a medication adherence device or app. CONCLUSIONS: Participants in our study varied considerably in their home medication management strategies and developed unique routines to remember to take their medication as well as to refill their pill cases. To reduce trial and error in establishing a strategy, there are opportunities for physicians and pharmacists to provide adherence guidance to older adults. To minimize the impact of disruptions on adherence, there are opportunities to develop more durable strategies and to design aids to medication adherence that leverage established daily routines.

8.
Psychiatry Res ; 340: 116104, 2024 Aug 06.
Article in English | MEDLINE | ID: mdl-39137558

ABSTRACT

We sought to derive an objective measure of psychomotor slowing from speech analytics during a psychiatric interview to avoid potential burden of dedicated neurophysiological testing. Speech latency, which reflects response time between speakers, shows promise from the literature. Speech data was obtained from 274 subjects with a diagnosis of bipolar I depression enrolled in a randomized, doubleblind, 6-week phase 2 clinical trial. Audio recordings of structured Montgomery-Åsberg Depression Rating Scale (MADRS) interviews at 6 time points were examined (k = 1,352). We evaluated speech latencies, and other aspects of speech, for temporal stability, convergent validity, sensitivity/responsivity to clinical change, and generalization across seven socio-linguistically diverse countries. Speech latency was minimally associated with demographic features, and explained nearly a third of the variance in depression (categorically defined). Speech latency significantly decreased as depression symptoms improved over time, explaining nearly 20 % of variance in depression remission. Classification for differentiating people with versus without concurrent depression was high (AUCs > 0.85) both cross-sectionally and longitudinally. Results replicated across countries. Other speech features offered modest incremental contribution. Neurophysiological speech parameters with face validity can be derived from psychiatric interviews without the added patient burden of additional testing.

9.
Psychiatry Res ; 340: 116105, 2024 Aug 03.
Article in English | MEDLINE | ID: mdl-39151277

ABSTRACT

Clinical trials in depression lack objective measures. Speech latencies are an objective measure of psychomotor slowing with face validity and empirical support. 'Turn latency' is the response time between speakers. Retrospective analysis was carried-out on the utility of turn latencies as an enrichment tool in a clinical trial of bipolar I depression. Speech data was obtained from 274 participants during 1,352 Montgomery-Åsberg Depression Rating Scale (MADRS) recordings in a randomized, placebo controlled, 6-week clinical trial of SEP-4199 (200 mg or 400 mg). Post-randomization turn latencies were compared between patients with moderate to severe depression and patients whose depression had remitted. A cutoff was determined and applied to turn latencies pre-randomization to classify individuals into two groups: Speech Latencies Slow (SL-Slow) and Speech Latencies Normal (SL-Normal). At week 6, SL-Slow (N = 172) showed significant separation in MADRS scores between placebo and treatment arms. SL-Normal (N = 102) showed larger MADRS improvements and no significant separation between placebo and treatment arms. Excluding SL-Normal increased primary outcome effect size by 52 % and 100 % for the treatment arms. Turn latencies are an objective measure available from standard clinical assessments and may assess the severity of symptoms more accurately and screen out placebo responders.

10.
Am J Infect Control ; 2024 Aug 15.
Article in English | MEDLINE | ID: mdl-39153516

ABSTRACT

BACKGROUND: Chronic obstructive pulmonary disease (COPD) is a risk factor for herpes zoster. Vaccination can prevent or attenuate herpes zoster and its related complications. However, evidence regarding vaccine uptake among patients with COPD is limited. Therefore, this cross-sectional study aimed to evaluate trends in herpes zoster vaccination and characteristics associated with vaccination among U.S. older adults with COPD. METHODS: Data from the 2008-2022 National Health Interview Survey were used. Participants aged ≥50 years were included. Joinpoint regression analysis was performed to analyze trends in herpes zoster vaccination. A multivariable logistic regression model was used to identify factors associated with herpes zoster vaccination. RESULTS: This study included 22,853 participants with COPD, representing approximately 9.8 million U.S. older adults with COPD. From 2008 to 2022, an increasing trend in herpes zoster vaccination was observed (average annual percent change=15.10, P<0.01) This increasing trend was also observed when stratified by age groups. Disparities in vaccination were found across several factors, including age, sex, race/ethnicity, region, educational level, health insurance, income, smoking status, perceived health status, and flu and pneumococcal vaccination. CONCLUSIONS: While there has been an upward trend in herpes zoster vaccination over the past 15 years among older adults with COPD, disparities across several characteristics were identified. These findings underscore the necessity for targeted policies and interventions to promote equity in vaccination.

11.
J Adv Nurs ; 2024 Aug 16.
Article in English | MEDLINE | ID: mdl-39149919

ABSTRACT

AIMS: To explore university nursing students and academic staff's perceptions of what increased gender diversity might bring to the nursing profession. DESIGN: An exploratory study with students and academic staff from two university nursing schools. METHODS: Students and staff in two university nursing schools were invited to participate in an anonymous online survey (October-November 2022). The survey focused on gender diversity within nursing and patient care, asking respondents about existing barriers to gender diversity and inviting ideas on increasing gender diversity within nursing. The survey findings helped inform questions, which were used to further explore views and thoughts of gender diversity within nursing through semi-structured one-to-one interviews (January-February 2023). RESULTS: Nearly, two-thirds (64%, n = 69) of survey respondents strongly agreed/agreed that the lack of gender diversity in nursing negatively impacted delivering care to a gender-diverse society. Most (84%, n = 90) strongly agreed/agreed that increased gender diversity within the nursing workforce would positively contribute to nursing. Three-quarters (75%, n = 74) strongly agreed/agreed that working with a more gender-diverse nursing workforce would enrich their experience as a nurse. Three themes emerged from the interview data: shared stereotypes; improved care through knowledge, better relations and the presence of a gender-diverse workforce; a culture of welcome: suggested changes for the future. CONCLUSION: Most of those who participated in the study believe there are benefits to be gained from greater gender diversity within nursing. This study provides insight into the lack of gender diversity in the nursing environment, highlights how this might impact patient care and suggests actions to make nursing a more inclusive profession. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Practical solutions were suggested, including the greater visibility of trans and non-binary persons in advertisement and recruitment campaigns to ensure nursing is viewed as a career choice for "all". Including a space for considered pronouns on university application forms, hospital documentation and name badges. Gender-neutral titles and uniforms should be considered for all nursing staff, and more gender-neutral toilets should be made available for staff and patients in university and hospital settings. IMPACT: This study addressed the lack of gender diversity in nursing and explored what an increase in gender diversity might bring to the nursing profession. The main findings were: (i) Less than a tenth (9%, n = 12) of respondents described their team of colleagues as being "extremely gender diverse". (ii) Most (84%, n = 90) strongly agreed/agreed that increased gender diversity within the nursing workforce would be a positive attribute to nursing. (iii) Three-quarters 75% (n = 74) strongly agreed/agreed that working with a more gender-diverse nursing workforce would enrich their experience as a nurse. (iv) Many stereotypes still exist in nursing and tackling them is important to make the profession more inclusive. (v) A nurse's gender can impact the care they provide. (vi) A more gender-diverse workforce would better reflect the population it serves. (vii) This research will have an impact on the nursing profession globally. REPORTING METHOD: The consolidated criteria for reporting qualitative studies (COREQ) was used as a guide throughout data collection and analysis. PATIENT OR PUBLIC CONTRIBUTION: Every step of the study, including the survey and interview schedule, was co-constructed using an iterative approach with service users, students and staff who had personal experience of gender diversity and were a core part of the study team.

12.
JMIR Form Res ; 8: e52165, 2024 Aug 02.
Article in English | MEDLINE | ID: mdl-39093606

ABSTRACT

BACKGROUND: Intensive longitudinal data (ILD) collection methods have gained popularity in social and behavioral research as a tool to better understand behavior and experiences over time with reduced recall bias. Engaging participants in these studies over multiple months and ensuring high data quality are crucial but challenging due to the potential burden of repeated measurements. It is suspected that participants may engage in inattentive responding (IR) behavior to combat burden, but the processes underlying this behavior are unclear as previous studies have focused on the barriers to compliance rather than the barriers to providing high-quality data. OBJECTIVE: This study aims to broaden researchers' knowledge about IR during ILD studies using qualitative analysis and uncover the underlying IR processes to aid future hypothesis generation. METHODS: We explored the process of IR by conducting semistructured qualitative exit interviews with 31 young adult participants (aged 18-29 years) who completed a 12-month ILD health behavior study with daily evening smartphone-based ecological momentary assessment (EMA) surveys and 4-day waves of hourly EMA surveys. The interviews assessed participants' motivations, the impact of time-varying contexts, changes in motivation and response patterns over time, and perceptions of attention check questions (ACQs) to understand participants' response patterns and potential factors leading to IR. RESULTS: Thematic analysis revealed 5 overarching themes on factors that influence participant engagement: (1) friends and family also had to tolerate the frequent surveys, (2) participants tried to respond to surveys quickly, (3) the repetitive nature of surveys led to neutral responses, (4) ACQs within the surveys helped to combat overly consistent response patterns, and (5) different motivations for answering the surveys may have led to different levels of data quality. CONCLUSIONS: This study aimed to examine participants' perceptions of the quality of data provided in an ILD study to contribute to the field's understanding of engagement. These findings provide insights into the complex process of IR and participant engagement in ILD studies with EMA. The study identified 5 factors influencing IR that could guide future research to improve EMA survey design. The identified themes offer practical implications for researchers and study designers, including the importance of considering social context, the consideration of dynamic motivations, and the potential benefit of including ACQs as a technique to reduce IR and leveraging the intrinsic motivators of participants. By incorporating these insights, researchers might maximize the scientific value of their multimonth ILD studies through better data collection protocols. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/36666.

13.
Transl Androl Urol ; 13(7): 1206-1218, 2024 Jul 31.
Article in English | MEDLINE | ID: mdl-39100824

ABSTRACT

Background: Having a spicy diet and smoking habit may be important factors causing erectile dysfunction (ED). The aim of this study is to investigate the impact of spicy diet and smoking habits on the risk of ED in men, with a focus on the interaction between these lifestyle factors. Methods: Our investigation was conducted as a retrospective analysis spanning from June 2017 to June 2023. Participants underwent interviews utilizing the Structured Interview on Erectile Dysfunction (SIEDY) to evaluate the degree of pathological factors. The International Index of Erectile Function-5 (IIEF-5) was employed as a metric for assessing ED. Additionally, the subjects were comprehensively questioned about their smoking history and dietary preferences, which included an inquiry into how often they consumed spicy meals. Results: Our research involved 373 participants, with 67.6% being individuals with ED. Among the participants, 50.7% were non-smokers and 49.3% were smokers, totaling 188 and 185, respectively. There was no significant difference in the spicy food frequency consumption among smokers with ED. However, non-smokers who consumed spicy food more frequently experienced more severe ED (P=0.02). ED patients showed significant differences in body mass index (BMI), blood glucose and testosterone, which were linked to vascular damage (P=0.03, P=0.02, P=0.04, respectively). Additionally, non-smokers who consumed more spicy food had higher scores on the SIEDY 2 scale, indicating marital factors (P=0.004). In non-smoking participant, a high spicy ratio indicated an even higher risk of ED [odds ratio 2.58, 95% confidence interval: 1.27-5.26; P=0.008], while there was no significant impact on ED in smoking participants (data not shown). Conclusions: This retrospective study suggests that a considerable consumption of spicy foods is independently correlated with an elevated risk of ED, particularly among non-smoking men.

14.
Article in English | MEDLINE | ID: mdl-39103672

ABSTRACT

INTRODUCTION: Vitiligo is an autoimmune disease, causing skin depigmentation. Individuals with vitiligo incur substantial psychosocial burden and have expressed frustration with their treatments. Here, we describe the burden of vitiligo and opinions on what constitutes meaningful change among participants of two qualitative interview studies. METHODS: Qualitative interviews were conducted with a subgroup of adolescent and adult participants with vitiligo from two pivotal phase 3 clinical trials of ruxolitinib cream (Study 1) and a real-world panel (Study 2). Participants were asked about their disease burden, treatment goals, importance of facial/body improvement (treatment satisfaction: scale range 0-10), and meaningfulness of change (yes/no). RESULTS: A total of 36 participants from Study 1 and 23 from Study 2 were interviewed. In Study 1, the highest degree of impact was on reduced self-esteem (facial lesions, 62.5%; body lesions, 55.6%), social inhibition (facial lesions, 65.6%; body lesions, 61.1%), and sun sensitivity (facial lesions, 31.3%; body lesions, 55.6%). Most participants (83.3%) reported that facial improvement was equally (36.1%) or more important (47.2%) than body improvement, with mean treatment satisfaction of 8.1 and 6.9, respectively. Meaningful change was reported by 83.3% and 92.9% of participants with 50-74% and ≥ 75% improvement per the facial Vitiligo Area Scoring Index, respectively, and by 82.6% of participants with ≥ 25% improvement per the total Vitiligo Area Scoring Index per Study 1 outcomes at Week 24. In Study 2, most (82.6%) participants felt that the noticeability of their vitiligo affected their behavior. Nearly all (87.0%) said that an ideal treatment would repigment or return natural color to their facial skin; 56.5% considered ≥ 50% facial repigmentation to be the smallest meaningful improvement. CONCLUSIONS: Participants from both qualitative interviews expressed substantial psychosocial burden. Repigmentation in both facial and body vitiligo were important, with meaningful change determined to be ≥ 50% facial repigmentation and ≥ 25% body repigmentation.


Vitiligo is an autoimmune disease that causes white patches to appear on the skin, affecting about 2% of people worldwide. People with vitiligo often have poor quality of life due to their disease and frequently do not believe that treatments work. We explored how people with vitiligo felt about their disease, and asked what hopes they had for treatment. Individual telephone interviews were conducted with 36 adolescents and adults with vitiligo from two clinical studies (Study 1) and 23 adolescents and adults with vitiligo from a real-world panel (Study 2) in the USA and Canada. Those from Study 1 said that their vitiligo caused them to have low self-esteem and to feel lonely. Most said that it was as important or more important to restore color to white patches on their face (i.e., repigmentation) than the body. Most achieving repigmentation of more than 50% on the face or more than 25% on the body were pleased with their treatment. In Study 2, most people said that their disease affected their behavior, and nearly all said that completely restoring color to their facial skin (i.e., 100% repigmentation) was important. Over half said that the smallest change they thought was important was more than 50% facial repigmentation. In short, people with vitiligo in two interview studies said that their vitiligo affected their quality of life. Most people with vitiligo in these studies reported that it was important to repigment more than 50% on the face and more than 25% on the body.

15.
J Anus Rectum Colon ; 8(3): 179-187, 2024.
Article in English | MEDLINE | ID: mdl-39086871

ABSTRACT

Objectives: To compare patients' self-administered responses to the Fecal Incontinence Severity Index (FISI) questionnaire (A1) with their responses to physician's oral interview (A3). Methods: Patients (n=100: mean age: 72 years; 66 women) with FI completed the FISI and the modified FISI (with written explanations) questionnaires, followed by a physician interview. To identify a threshold for the rating gap between A1 and A3, we calculated each patient's mean difference in the FISI scores. Results: There was no significant difference in the FISI scores between A1 and A3. A rating gap existed in the FISI scores (mean difference=8.9). It occurred in 37% of the patients, making its threshold 9. Multivariate analysis revealed that older age and no history of pelvic floor surgery were independently associated with the presence of a rating gap in the FISI scores. The in-coincidence of ticked boxes to all types of leakage between the self-administered responses and those by physician's oral history was 49% (197/400). Older age was associated with the in-coincidence of a ticked box between the assessment results of gas or solid stool leakage. Conclusions: Some non-negligible discrepancy existed between patients' self-administered responses and their responses to physician's oral interview, especially in older patients.

16.
Schizophr Bull ; 2024 Aug 01.
Article in English | MEDLINE | ID: mdl-39088730

ABSTRACT

BACKGROUND: Cognitive impairment associated with schizophrenia (CIAS) negatively impacts daily functioning, quality of life, and recovery, yet effective pharmacotherapies and practical assessments for clinical practice are lacking. Despite the pivotal progress made with establishment of the Measurement and Treatment Research to Improve Cognition in Schizophrenia (MATRICS) Consensus Cognitive Battery (MCCB) for clinical research, implementation of the full MCCB is too time-consuming and cost-ineffective for most clinicians in clinical practice. STUDY DESIGN: Here we discuss current assessments in relation to delivery format (interview-based and performance-based), validity, ease of use for clinicians and patients, reliability/reproducibility, cost-effectiveness, and suitability for clinical implementation. Key challenges and future opportunities for improving cognitive assessments are also presented. STUDY RESULTS: Current assessments that require 30 min to complete would have value in clinical settings, but the associated staff training and time required might preclude their application in most clinical settings. Initial profiling of cognitive deficits may require about 30 min to assist in the selection of evidence-based treatments; follow-up monitoring with brief assessments (10-15 min in duration) to detect treatment-related effects on global cognition may complement this approach. Guidance on validated brief cognitive tests for the strategic monitoring of treatment effects on CIAS is necessary. CONCLUSIONS: With increased advancements in technology-based and remote assessments, development of validated formats of remote and in-person assessment, and the necessary training models and infrastructure required for implementation, are likely to be of increasing clinical relevance for future clinical practice.

17.
Addict Sci Clin Pract ; 19(1): 57, 2024 Aug 02.
Article in English | MEDLINE | ID: mdl-39095898

ABSTRACT

BACKGROUND: Substance use disorders (SUDs) have been consistently shown to exhibit moderate intergenerational continuity (1-3). While much research has examined genetic and social influences on addiction, less attention has been paid to clients' and lay persons' perceptions of genetic influences on the heritability of SUD (4) and implications for treatment. METHODS: For this qualitative study, twenty-six structured Working Model of the Child Interviews (WMCI) were conducted with mothers receiving inpatient SUD treatment. These interviews were thematically analyzed for themes related to maternal perceptions around intergenerational transmission of substance use behaviours. RESULTS: Findings show that over half of the mothers in this sample were preoccupied with their children's risk factors for addictions. Among this group, 29% spontaneously expressed concerns about their children's genetic risk for addiction, 54% shared worries about their children's propensity for addiction without mentioning the word gene or genetic. Additionally, 37% had challenges in even discussing their children's future when prompted. These concerns mapped onto internal working models of attachment in unexpected ways, with parents who were coded with balanced working models being more likely to discuss intergenerational risk factors and parents with disengaged working models displaying difficulties in discussing their child's future. CONCLUSION: This research suggests that the dominant discourse around the brain-disease model of addictions, in its effort to reduce stigma and self-blame, may have unintended downstream consequences for parents' mental models about their children's risks for future addiction. Parents receiving SUD treatment, and the staff who deliver it, may benefit from psychoeducation about the intergenerational transmission of SUD as part of treatment.


Subject(s)
Genetic Predisposition to Disease , Mothers , Substance-Related Disorders , Humans , Substance-Related Disorders/genetics , Substance-Related Disorders/psychology , Female , Adult , Mothers/psychology , Risk Factors , Qualitative Research , Male , Child , Middle Aged , Mother-Child Relations/psychology
18.
Qual Health Res ; : 10497323241241225, 2024 Aug 07.
Article in English | MEDLINE | ID: mdl-39110509

ABSTRACT

Interviews are central to the health ethnographers' toolkit. In this article, we offer a critical engagement with methodological literature coupled with reflective examples from our own research, in order to articulate the value of the ethnographic interview in health research. We contribute to literature on ethnographic interviews in two ways: by decoupling ethnographic interviews from the necessity of accompanying participant observation, and by outlining an ethnographic disposition towards interviewing. We define the seven key epistemic dispositions underpinning the ethnographic interview. These are humility, a readiness to revise core assumptions about a research topic, attentiveness to context, relationality, openness to complexity, an attention to ethnographic writing, and a consideration of the politics and history of the method. The strength of an epistemic understanding of the ethnographic interview is that it offers flexibility for developing a diverse array of interview techniques responsive to the needs of different research contexts and challenges. Ethnographic interviews, we show, contribute to the study of health through a richly explorative, responsive, contextualised, and reflexive approach.

19.
Int J Eat Disord ; 2024 Aug 09.
Article in English | MEDLINE | ID: mdl-39126192

ABSTRACT

OBJECTIVE: The definition and assessment of remission in anorexia nervosa (AN) needs greater consensus. Particularly in adolescents, the use of patient-reported composite indices (such as the Eating Disorder Examination [EDE] Global Score) as the sole measure of psychological remission has the potential to obscure patients' true clinical status, given developmental factors and the propensity towards symptom minimization in AN. METHOD: End of treatment (EOT) data from a randomized controlled trial comparing two formats of manualized family-based treatment for adolescents with AN (N = 106) were analyzed. Participants completed the EDE, and their parents completed a parent-as-informant version of the EDE (Parent Eating Disorder Examination; PEDE). Rates of remission were compared across indices (i.e., EDE Global Score vs. diagnostic item analysis) and informant (i.e., adolescent vs. parent), both independently and in combination with the achievement of a percent median body mass index (% mBMI) greater than or equal to 95%. RESULTS: For both adolescent and parent reports, there were higher rates of remission when defined by Global Score than when defined by EDE or PEDE diagnostic items. There were no significant differences in remission rates based on informant. DISCUSSION: In the assessment of remission in AN, the EDE Global Score may not detect some adolescents who continue to exhibit clinically significant psychological symptoms. This study supports a detailed, multidimensional approach to assessing remission in adolescent AN to optimize sensitivity to patients' diagnostic profile. Future research should explore whether parent-child concordance on measures of ED psychopathology varies over the course of treatment.

20.
Int Emerg Nurs ; 76: 101503, 2024 Aug 09.
Article in English | MEDLINE | ID: mdl-39126885

ABSTRACT

BACKGROUND: Abdominal pain is one of the most common complaints when patients are admitted to emergency departments (ED). Unfortunately, many of these patients are readmitted to the ED shortly after initial discharge. The perspectives of these patients have not yet been explored. PURPOSE: The study aimed to explore how patients readmitted with acute abdominal pain in the ED experienced their initial admission, the time after discharge, and the cause of readmission. METHODS: The study had a qualitative explorative design with a phenomenological-hermeneutic approach. Semi-structured individual telephone interviews were conducted with 14 patients readmitted with acute abdominal pain. RESULTS: The analysis showed four themes: 1) being vulnerable during hospitalisation, 2) the meaning of information during hospitalisation, 3) discharged without being diagnosed, and 4) readmitted in the pursuit of relief. The patients wanted more knowledge and better communication despite their vulnerable condition. Patients were discharged whilst still in pain, and uncertainty of the situation at home contributed to mistrust of the health professionals. CONCLUSION: Patients' experience of the first ED admission due to acute abdominal pain was loneliness, minimal contact with healthcare professionals, and lack of information and involvement in pain management. Discharge was associated with feelings of insignificance and contributed to a fear of death. Pain was the main reason for readmission. Patients described how multiple readmissions contributed to being taken seriously by healthcare professionals.

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