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Background: There are limited tools to measure the burden of disease and effectiveness of medical/surgical interventions in patients with cryptoglandular fistulas. The aim of this study was to explore concepts that are relevant and important to patients with complex cryptoglandular fistulas (CCF) and to develop a patient-centred, disease-specific, patient-reported outcome measure (PROM) to assess symptom burden and impacts of CCF. Methods: A targeted literature review was conducted, followed by one-to-one telephone interviews with five colorectal surgeons (USA, n = 3; UK, n = 1; Spain, n = 1) and 20 US adult patients with CCF to inform the development of a conceptual model and a CCF-specific PROM. The targeted literature review informed the development of the preliminary conceptual model and identified a PROM in the literature that was used as a reference to generate the draft CCF-specific PROM. The colorectal surgeon interviews provided insights on the experience of patients with CCF to refine the conceptual model, formulate probing questions for use in patient interviews, and to develop the draft CCF-specific PROM. Patients' descriptions of their experiences with symptoms and the impacts on their lives and evaluation of the draft CCF-specific PROM in concept elicitation and cognitive interviews were used to develop the final conceptual model and final CCF-specific PROM. Results: Ten symptoms (odour, pain during bowel movement, abscess, post-operative pain, discharge/drainage/leakage, anal/perianal pain, inflammation/swelling, skin irritation, bleeding and itchiness) and 11 impacts (discomfort, inability to exercise, embarrassment, difficulty sitting, worry about disease, adapted life to maintain hygiene, negatively impacted social life/isolation, inability to perform daily activities, reduced interest in sex, negatively impacted intimate relationships and negatively impacted mood) were reported as most salient by patients. The patient experience, clinician perspective, and literature review provided input to item generation. Evaluation of relevance and patient understanding through cognitive interviews with patients provided evidence for the content validity of the new patient-reported outcome measure: the 20-item Complex Cryptoglandular Fistula Questionnaire™ (CCFQ-20™). Conclusion: The CCFQ-20™ is a new clinician-guided, patient-validated, disease-specific patient-reported outcome measure that measures disease impact and quality of life in patients with CCF. [ABSTRACT FROM AUTHOR]

Objectives Glucocorticoids (GCs) ('steroids') are used to treat rheumatic diseases but adverse effects are common. We aimed to explore the impact of GC therapy on health-related quality of life (HRQoL), to inform the development of a treatment-specific patient-reported outcome measure (PROM) for use in clinical trials and practice. Methods Semi-structured qualitative interviews were conducted with patients from the UK, USA and Australia, treated for a rheumatic condition with GCs in the last 2 years. Purposive sampling was used to select participants with a range of demographic and disease features. An initial conceptual framework informed interview prompts and cues. Interviews elicited GC-related physical and psychological symptoms and salient aspects of HRQoL in relation to GC therapy. Interview data were analysed inductively to develop initial individual themes and domains. Candidate questionnaire items were developed and refined. Results Sixty semi-structured qualitative interviews were conducted (UK n  = 34, USA n  = 10, Australia n  = 16). The mean age was 58 years; 39/60 were female; and 18 rheumatic diseases were represented. Some 126 individual themes were identified and organized into six domains: physical symptoms; psychological symptoms; psychological impact of steroids; impact of steroids on participation; impact of steroids on relationships; and benefits of steroids. Candidate questionnaire items were tested and refined by piloting with patient research partners, iterative rounds of cognitive interviews and linguistic translatability assessment, informing a draft questionnaire. Conclusion We describe an international qualitative study to develop candidate items for a treatment-specific PROM for patients with rheumatic diseases. A future survey will enable the validation of a final version of the PROM. [ABSTRACT FROM AUTHOR]

Bondage/discipline, dominance/submission, and sadism/masochism (BDSM; "kink") are frequently pathologized as derivatives of abuse. Although the link is unsubstantiated, some kink-identified people who happen to be survivors of trauma may engage in kink, or trauma play, to heal from, cope with, and transform childhood abuse or adolescent maltreatment. The present study sought a thematic model (Braun & Clarke, Qualitative Research in Psychology, 3(2), 77–101, 2006) of trauma recovery through kink using a critical realist, inductive approach to inquiry. Participants were eligible if they had experienced early abuse, were adults, and practiced kink. Six superordinate themes were generated from semi-structured interviews with 20 participants from five countries: cultural context of healing (e.g. using BDSM norms and previous therapy to reframe kink and trauma), restructuring the self-concept (e.g. strengthening internal characteristics which had been harmed or distorted), liberation through relationship (e.g. learning to be valued by intimate others), reclaiming power (e.g. setting and maintaining personal boundaries), repurposing behaviors (e.g. engaging in aspects of prolonged exposure), and redefining pain (e.g. transcending painful memories through masochism). Notably, participants only reported retraumatizing experiences prior to learning about the structural safeguards of BDSM. Research and clinical implications are discussed by drawing on general models of trauma recovery. [ABSTRACT FROM AUTHOR]

This phenomenological study explored experiences of asexual identified persons within the context of relationships. Thirty-five asexual spectrum identified participants took part in semi-structured interviews that focused on how they viewed themselves and their uniquenesses within relationship dynamics. Queer theory guided the research design and analysis. Findings include a movement towards understanding and experiencing relationships that extend beyond heteronormativity. Themes included: (a) evolving asexual identity development, (b) conscious adapting and communication within relationships, (c) reconsidering amatonormativity, and (d) therapeutic recommendations. Participants identified that their relationships were distinctly different from social expectations; however, overall, partners adapted successfully to these differences with communication and understanding. Findings contribute to a greater competency in asexual identities. [ABSTRACT FROM AUTHOR]

Introduction: Treatment decisions in older adults with acute myeloid leukemia (AML) are challenging, particularly for those who are not candidates for intensive chemotherapy (IC), and the trade-offs patients, their families and physicians consider when choosing a treatment option are not well understood. This qualitative research explored the value of extending survival and the treatment decision-making process from a multi-stakeholder perspective. Methods: Overall, 28 patients with AML (≥ 65 years old, unsuitable for IC), 25 of their relatives and 10 independent physicians from the US, UK and Canada took part in one-on-one, 60-minute qualitative interviews. Results: Across all stakeholders, improved health-related quality of life (HRQoL), extended survival and relief of AML symptoms were recognized as most important in AML treatment decision-making. However, extending survival in 'good health' was more important than extending survival alone, particularly because of the extra time it gives patients and their relatives together, and allows patients to achieve important goals. Patients' limited understanding of available treatment options, paired with incorrect perceptions of treatment side effects, impacted their involvement in the treatment decision-making process. Patients and physicians perceived physicians to have the most influence in the decision-making process despite their priorities not always aligning. Conclusion: These findings illustrate the importance of having structured discussions which explicitly assess patients' goals and their understanding and expectations of treatments and also the need for patient friendly resources about the lived experience of AML and available treatment options. These measures will help to ensure that patients are fully involved in the shared decision-making process. [ABSTRACT FROM AUTHOR]

Pandemics threaten world stability; however, spread is mitigated with prevention behaviors. We introduce "personally relevant knowledge" to explain the knowledge–behavior gap (i.e., objective and subjective knowledge on information acquisition and behavioral change). Hypotheses are derived from prior knowledge literature, economic psychology, and relevance theory. Multimethod analysis (survey data, partial least squares structural equation path modeling [PLS-SEM], and an asymmetric information theoretic statistical analysis) is applied to H1N1 data from the USA and Australia. Personally relevant knowledge is an important addition to prior knowledge conceptualizations, and information theory uncovers asymmetric variable relationships concerning the knowledge–behavior gap, not captured by PLS-SEM. [ABSTRACT FROM AUTHOR]

Background: Children from Black and South Asian ethnic groups are at risk for childhood obesity in the United Kingdom. To inform local action for childhood obesity prevention, it is crucial to explore the basis of ethnic disparities and consider the perspectives of children. This study aimed to understand cultural and contextual factors influencing childhood obesity in an ethnically diverse population using child‐centred methodology. Methods: 'Draw, write and tell' interviews were held with children aged 9–10 years in Coventry, an urban, multi‐ethnic city in the United Kingdom. Data were analysed thematically using framework analysis. Results: Twenty‐six children participated (85% from Black or minority ethnic groups). Children's perspectives revealed universal themes around health, diet, physical activity and weight and highlighted issues specific to ethnic groups and those living in deprived areas. An underlying feature was weight‐based stigmatization and group stereotyping, and an emphasis on internal factors as the cause of obesity. Children described some experiences of social disadvantage but did not regard these as a barrier to being physically active. Children identified cultural or religious practices or experiences of migration that influenced diet and physical activity. Conclusions: These findings allow a broad range of children's perspectives to inform future intervention design. In addition, the study was able to identify the many similarities and small amount of diversity in children's perspectives across ethnic groups. [ABSTRACT FROM AUTHOR]

Despite considerable progress that organizations have made during the past 20 years to increase the representation of women at board level, they still hold few board seats. Drawing on a qualitative study involving 30 companies with women directors in the United Kingdom, the United States, and Ghana, we investigate how the relationship between gender in the boardroom and corporate governance operates. The findings indicate that the presence of a minority of women on the board has an insignificant effect on board performance. Yet the chairperson's role is vital in leading the change for recruiting and evaluating candidates and their commitment to the board with diversity and governance in mind. Our study also sheds light on the multifaceted reasons why women directors appear to be resisting the discourse of gender quotas. © 2015 Wiley Periodicals, Inc. [ABSTRACT FROM AUTHOR]

Background: Hemophagocyti.c lymphohistiocytosis (HLH) is a rare and severe disorder characterized by abnormal activation of the immune system. Primary HLH causes prolonged fever, spleen and liver enlargement, and organ dysfunction, usually in infancy and early childhood and is fatal if left untreated. As effective treatment options emerge, such as emapalumab-lzsg, Health Technology Assessment bodies around the world will assess them in terms of cost-effectiveness. This study was designed to estimate quality of life weights (utilities) for such analyses. Methods: Vignettes were developed describing HLH treatment related health states. Health states included active HLH, HLH plus neurological symptoms, receiving chemotherapy, undergoing stem cell transplant (SCT), graft versus host disease (GVHD), cure and end of life care. The vignettes were based on information from in depth interviews with clinical specialists; and qualitative research with four parents of children with primary HLH aged between 1 and 18 years old. The vignettes were then assessed in time trade off (TTO) interviews with members of the UK general public in one on one face to face interviews with trained, experienced interviewers. Preference data were analysed using the generalised estimating equations framework. Results: Detailed qualitative data captured the substantial burden of this disease for young children. One hundred participants completed the TTO interviews. The utility score for Active HLH was estimated as 0.32 (95% CI, 0.24 to 0.39). Values for other states were HLH plus neurological symptoms (0.27, 95%CI 0.18–0.35), receiving chemotherapy (0.26, 95%CI 0.17–0.34), undergoing SCT (0.18, 95%CI 0.07–0.28), GVHD (0.07, 95%CI -0.04-0.17), cure (0.72, 95%CI 0.67–0.77) and end of life care (− 0.17, 95%CI -0.27- -0.07). Conclusions: This study has estimated utility weights for seven different HLH related states which are based on detailed input from carers and physicians and have good face validity. There are few other options for collecting these data in an ultra-rare setting. [ABSTRACT FROM AUTHOR]

Complex trauma can have a significant negative impact on the developing brain and occupational performance of children and adolescents. This study explored current practice in occupational therapy in complex trauma utilizing interviews and interpretive descriptive analysis. Nine experienced occupational therapists identified functional concerns that were mapped onto the International Classification of Functioning, Disability and Health framework. Findings indicated the importance of caregiver involvement in treatment, interventions to address bottom-up processes, advanced training, and being connected with other therapists who serve this population. Given the range of interventions with this complex population, occupational therapists have a unique opportunity to contribute to this emerging area of practice. [ABSTRACT FROM AUTHOR]

A proliferating literature documents cross-national variation in medical practice and seeks to explain observed differences in terms of the presence of certain kinds of healthcare systems, economic, and cultural differences between countries. Less is known about how providers themselves understand these influences and perceive them as relevant to their clinical work. Using qualitative data from a cross-national factorial experiment in the United States and United Kingdom, we analyze 244 primary care physicians’ explanations of how organizational features of their respective healthcare settings influence the treatment decisions they made for a vignette patient, including affordability of care; within-system quality deficits; and constraints due to patient behavior. While many differences are attributed to financial constraints deriving from two very differently structured healthcare systems, in other ways they are reflections of cultural and historical expectations regarding medical care, or interactions between the two. Implications, including possible challenges to the implementation of universal care in the USA, are discussed. [ABSTRACT FROM PUBLISHER]