Validation of the compassionate engagement and action scales, compassion scale, and Sussex-Oxford compassion scales in a French-Canadian sample.

Compassion towards oneself and towards others has been associated with positive psychological outcomes, however, research is limited by the availability of valid psychometric measures, particularly in languages other than English. The current study translated (English to French) and validated the following measures: the Compassionate Engagement and Action Scales (CEAS), assessing self-compassion (CEAS-SC), compassion to others (CEAS-TO), and compassion from others (CEAS-FROM); the Compassion Scale (CS); and the Sussex-Oxford Compassion Scales for Self (SOCS-S) and Others (SOCS-O). French-speaking participants were recruited online (N = 384) and completed the translated measures as well as questionnaires assessing self-compassion, depression, anxiety, stress, insecure attachment, mindfulness, and well-being. Confirmatory Factor Analysis supports the original factor structures proposed for the CEAS-FROM (two-factor hierarchical), CS (four-factor hierarchical), SOCS-S and SOCS-O (five-factor hierarchical), with alternate factor structures proposed for CEAS-SC (three-factor) and CEAS-TO (two-factor). Results showed good internal consistency and convergent validity for all scales, supporting the use of total scores for the translated measures.

A critical and systematic literature review of epistemic justice applied to healthcare: recommendations for a patient partnership approach.

Invalidation from healthcare practitioners is an experience shared by many patients, especially those marginalized or living with contested conditions (e.g., chronic pain, fibromyalgia, etc.). Invalidation can include not taking someone's testimony seriously, imposing one's thoughts, discrediting someone's emotions, or not perceiving someone's testimony as equal and competent. Epistemic injustices, that is, the disqualification of a person as a knower, are a form of invalidation. Epistemic injustices have been used as a theoretical framework to understand invalidation that occurs in the patient-healthcare provider relationship. However, to date, the different recommendations to achieve epistemic justice have not been listed, analyzed, nor compared yet. This paper aims at better understanding the state of the literature and to critically review possible avenues to achieve epistemic justice in healthcare. A systematic and critical review of the existing literature on epistemic justice was conducted. The search in four databases identified 629 articles, from which 35 were included in the review. Strategies to promote epistemic justice that can be applied to healthcare are mapped in the literature and sorted in six different approaches to epistemic justice, including virtuous, structural, narrative, cognitive, and partnership approaches, as well as resistance strategies. These strategies are critically appraised. A patient partnership approach based on the Montreal Model, implemented at all levels of healthcare systems, seems promising to promote epistemic justice in healthcare.

Patient Learning Pathway: Identifying Patient Competencies in Teledermatology for Effective Management of Dermatological Conditions.

BACKGROUND: Dermatology consultations in Québec, Canada, face accessibility challenges, with most dermatologists concentrated in urban areas. Teledermatology, offering remote diagnosis and treatment, holds promise in overcoming these limitations. However, concerns regarding patient-doctor relationships and logistical issues exist. OBJECTIVES: This article aims to introduce a dermatology patient learning pathway (PLP) developed by the Centre of Excellence on Partnership with Patients and the Public (CEPPP), focusing on knowledge, abilities, and skills mobilized by patients and their loved ones at key moments of the life course with an illness, as well as emerging educational needs. METHODS: The PLP development was co-developed with dermatology patient and caregiver partners, stakeholders, and the CEPPP team. The process encompassed stakeholder engagement, exploration, recruitment of patient and caregiver partners, co-development of the PLP draft, and validation through consensus building. RESULTS: The PLP methodology led to the creation of 44 learning objectives, comprising a total of 107 subobjectives. These objectives were organized into 8 phases of the patient life course with a dermatological condition: (1) prevention and predisposition; (2) discovery, self-examination, or observation of a change; (3) first consultation; (4) wandering; (5) consultation with a dermatologist; (6) diagnosis; (7) treatments; and (8) living with it. CONCLUSIONS: The dermatology PLP serves as a resource outlining patient competency across different stages of managing a dermatological condition throughout their life course. In the context of teledermatology, the PLP might facilitate patient and caregiver engagement by helping select appropriate information and tools to support active participation in care.

Investigating the Impact of Stress on Pain: A Scoping Review on Sense of Control, Social-Evaluative Threat, Unpredictability, and Novelty (STUN Model).

Background: Stress can have paradoxical effects on pain, namely hyperalgesia and hypoalgesia. Four situational characteristics activate the hypothalamic-pituitary-adrenal axis, leading to a physiological stress response: lacking Sense of control, social-evaluative Threat, Unpredictability and Novelty (STUN). This scoping review reports on the types of evidence published on the effects of STUN characteristics on pain outcomes. Databases/Data Treatment: Searches of primary electronic databases were performed to identify articles published on adults between 1990 and 2021 that contained search terms on pain and stress/STUN characteristics. A total of 329 articles were included in the analysis. Results: Only 3.3% of studies examined simultaneously >1 STUN component. Almost all observational studies (177/180) examined the association between perceived stress and pain without measuring physiological stress responses. Of the 130 experimental studies, 78 (60.0%) manipulated stressful characteristics through nociception, and only 38.5% assessed if/how stress manipulation impacted perceived stress. Conclusion: There is a clear lack of integration of the characteristics that trigger a physiological stress response in the pain field. Only 3.3% of studies examined simultaneously more than one STUN component and there is an unequal attention given to individual components of the STUN framework. Recommendations for future research include selection of stress manipulations/measurements that are more precisely inducing/reflecting neurobiological mechanisms of stress responses to insure valid integration of scientific knowledge.

Adopting a learning pathway approach to patient partnership in telehealth: A proof of concept.

Background: Amidst the acceleration of digital health deployment in the province of Québec, the need to clarify the role of patients and caregivers was deemed essential to guide the deployment of telehealth strategies. A patient learning pathway (PLP) approach to patient and caregiver engagement was developed, containing knowledge, abilities, and skills mobilized by patients and caregivers at key moments of the life course with an illness, as well as emerging educational needs. Objective: The objective of the current paper is to present the innovative PLP approach to patient and caregiver engagement in telehealth by applying it to three medical specialties within the context of the Québec healthcare system: dermatology, oncology, and mental health/psychiatry. Methods: The PLP methodology is constituted of five chronological phases: 1) identification and engagement of main stakeholders; 2) exploration; 3) recruitment of patient and caregiver partners; 4) co-development of PLP first draft; and 5) validation and consensus building regarding competencies. Results: Three PLPs (dermatology, oncology, and mental health/psychiatry) have already been mapped using this participatory approach, showing that the proposed PLP approach to patient and caregiver engagement in telehealth is feasible. Conclusions: Mapping patient and caregiver competencies organized throughout patients' life course with an illness can lead to a highly operationalizable tool, which relevant stakeholders can use in a way that promotes patient self-management, shared decision-making, and empowerment. Innovation: The five-step PLP methodology developed proposes an innovative and structured approach to partnership with patients and caregivers in telehealth by outlining their roles throughout their life course with an illness.

A systematic review of tools for predicting complications in patients with acute infectious diarrhea.

OBJECTIVE: To identify tools that predict the risk of complications in patients presenting to outpatient clinics or emergency departments (ED) with acute infectious diarrhea. METHODS: Medline, Embase, Cochrane Library, Web of Science and CINAHL were searched from inception to July 2021. Articles reporting on the derivation or validation of a score to stratify the risk of intravenous rehydration or hospitalization among patients with acute infectious diarrhea in the ED or outpatient clinic were retained for analysis. RESULTS: Five articles reporting on two different tools were identified. Developed to assess the risk of hospitalization of children, the EsVida scale has not been externally validated. Developed originally to assess the level of dehydration in children, the Clinical Dehydration Scale (CDS) was evaluated as a risk stratification tool. For predicting intravenous rehydration, a CDS score ≥ 1 showed a sensitivity between 0.73 and 0.88 and specificity between 0.38 and 0.69, whereas a CDS score ≥ 5 showed a sensitivity between 0.06 and 0.32 and specificity between 0.94 and 0.99. For predicting hospitalization, a CDS score ≥ 1 showed a sensitivity between 0.74 and 1.00 and specificity between 0.34 and 0.38, whereas a CDS score ≥ 5 showed a sensitivity between 0.26 and 0.62 and specificity between 0.66 and 0.96. High heterogeneity among studies and unclear risk of bias precluded meta-analysis. CONCLUSION: As a risk-stratification tool, the CDS has been validated only for children. Further research is needed to develop and validate a tool suitable for adults in the ED.

The International Human Epigenome Consortium Data Portal.

The International Human Epigenome Consortium (IHEC) coordinates the production of reference epigenome maps through the characterization of the regulome, methylome, and transcriptome from a wide range of tissues and cell types. To define conventions ensuring the compatibility of datasets and establish an infrastructure enabling data integration, analysis, and sharing, we developed the IHEC Data Portal (http://epigenomesportal.ca/ihec). The portal provides access to >7,000 reference epigenomic datasets, generated from >600 tissues, which have been contributed by seven international consortia: ENCODE, NIH Roadmap, CEEHRC, Blueprint, DEEP, AMED-CREST, and KNIH. The portal enhances the utility of these reference maps by facilitating the discovery, visualization, analysis, download, and sharing of epigenomics data. The IHEC Data Portal is the official source to navigate through IHEC datasets and represents a strategy for unifying the distributed data produced by international research consortia.

Promoting Breast Milk Nutrition in Infants With Cleft Lip and/or Palate.

BACKGROUND: The orofacial defect of cleft lip/palate (CL/P) involves an altered physiological anatomy that affects the infant's feeding ability. Infants have cleft lip (CL), cleft palate (CP), or both (CL/P). Dysfunction in the seal, as with cleft lip, or in the ability to coordinate muscle movement to generate negative pressure, as with cleft palate, leads to feeding issues that may compromise growth and affect bonding. PURPOSE: The purpose of this article is to present (1) scientific evidence that supports clinical feeding practices for the infant with CL/P and (2) teaching strategies for staff and parents. METHODS: Evidence was synthesized using a narrative review of randomized controlled trials, qualitative studies, systematic reviews, professional guidelines, and position statements. Findings were used to present specialized equipment and feeding techniques to support human milk feeding. FINDINGS: Special considerations for feeding infants with CL/P include assessing the infant's sucking ability, demonstrating proper breastfeeding positioning, supporting mothers to establish and maintain their milk supply, considering adaptive feeding equipment (ie, specialized bottles and nipples), and education about the benefits of human milk. IMPLICATIONS FOR PRACTICE AND RESEARCH: Support from healthcare professionals, particularly lactation specialists and nursing staff, is critical. Breastfeeding and the use of human milk should be prioritized and supported. Research is needed to explore environmental, genetic, and nutritional causes (eg, folic acid deficiency) of orofacial defects.

Hydroxypropyl cellulose stabilizes amorphous solid dispersions of the poorly water soluble drug felodipine.

Overcoming the low oral bioavailability of many drugs due to their poor aqueous solubility is one of the major challenges in the pharmaceutical industry. The production of amorphous solid dispersions (ASDs) of these drugs using hydrophilic polymers may significantly improve their solubility. However, their storage stability and the stability of their supersaturated solutions in the gastrointestinal tract upon administration are unsolved problems. We have investigated the potential of a low viscosity grade of a cellulosic polymer, hydroxypropyl cellulose (HPC-SSL), and compared it with a commonly used vinyl polymer, polyvinylpyrrolidone vinyl acetate (PVP-VA), for stabilizing the ASDs of a poorly water soluble drug, felodipine. The ASDs were produced using hot melt mixing and stored under standard and accelerated stability conditions. The ASDs were characterized using differential scanning calorimetry, powder X-ray diffraction, and Fourier transform infrared spectroscopy. Drug dissolution and partitioning rates were evaluated using single- and biphasic dissolution studies. The ASDs displayed superior drug dissolution and partitioning as compared to the pure crystalline drug, which might be attributed to the formation of a drug-polymer molecular dispersion, amorphous conversion of the drug, and drug-polymer hydrogen bonding interactions. Late phase separation and early re-crystallization occurred at lower and higher storage temperatures, respectively, for HPC-SSL ASDs, whereas early phase separation, even at low storage temperatures, was noted for PVP-VA ASDs. Consequently, the partitioning rates for ASDs dispersed in HPC-SSL were greater than those of PVP-VA at lower and room temperature storage, whereas the performance of both of the ASDs was similar when stored at higher temperatures.

Low-viscosity hydroxypropylcellulose (HPC) grades SL and SSL: versatile pharmaceutical polymers for dissolution enhancement, controlled release, and pharmaceutical processing.

Hydroxypropylcellulose (HPC)-SL and -SSL, low-viscosity hydroxypropylcellulose polymers, are versatile pharmaceutical excipients. The utility of HPC polymers was assessed for both dissolution enhancement and sustained release of pharmaceutical drugs using various processing techniques. The BCS class II drugs carbamazepine (CBZ), hydrochlorthiazide, and phenytoin (PHT) were hot melt mixed (HMM) with various polymers. PHT formulations produced by solvent evaporation (SE) and ball milling (BM) were prepared using HPC-SSL. HMM formulations of BCS class I chlorpheniramine maleate (CPM) were prepared using HPC-SL and -SSL. These solid dispersions (SDs) manufactured using different processes were evaluated for amorphous transformation and dissolution characteristics. Drug degradation because of HMM processing was also assessed. Amorphous conversion using HMM could be achieved only for relatively low-melting CBZ and CPM. SE and BM did not produce amorphous SDs of PHT using HPC-SSL. Chemical stability of all the drugs was maintained using HPC during the HMM process. Dissolution enhancement was observed in HPC-based HMMs and compared well to other polymers. The dissolution enhancement of PHT was in the order of SE>BM>HMM>physical mixtures, as compared to the pure drug, perhaps due to more intimate mixing that occurred during SE and BM than in HMM. Dissolution of CPM could be significantly sustained in simulated gastric and intestinal fluids using HPC polymers. These studies revealed that low-viscosity HPC-SL and -SSL can be employed to produce chemically stable SDs of poorly as well as highly water-soluble drugs using various pharmaceutical processes in order to control drug dissolution.

Neurofibromatosis type 1 and the "elephant man's" disease: the confusion persists: an ethnographic study.

BACKGROUND: In 1986, two Canadian geneticists had demonstrated that Joseph Merrick, better known as the Elephant Man, suffered from the Proteus syndrome and not from neurofibromatosis type 1 (NF1), as was alleged by dermatologist Parkes in 1909. Despite this and although the two diseases differ at several levels: prevalence, diagnostic criteria, clinical manifestations and transmission, the confusion between NF1 and the "elephant man's" disease continues in medical and social representations by current linguistic usage, and in some media reports. With this article, we want to 1) document the persistence and extent of this fallacy, 2) identify certain critical factors that contribute to its persistence, and 3) evaluate its impact on the health and well being of patients with NF1 and their family members. METHODOLOGY: Participant observation in the course of an ethnographic study on intergenerational dialogue between individuals with neurofibromatosis and their parents - Analysis of the scientific literature and of pinpoint articles in the print and online news media. FINDINGS: Our findings show that because physicians have little knowledge about NF1, several print and online news media and a lot of physicians continue to make the confusion between NF1 and the disease the "elephant man". This misconception contributes to misinformation about the disease, feeding prejudices against affected patients, exacerbating the negative impacts of the disease on their quality of life, their cognitive development, their reproductive choices, as well as depriving them of proper care and appropriate genetic counseling. CONCLUSION: If family physicians and pediatricians were properly informed about the disease, they could refer their patients with NF1 to NF clinics and to specialists. Thus, patients and their family members would benefit from better-tailored clinical management of their cases, perhaps even optimal management. [corrected]

Neurofibromatosis type 1: persisting misidentification of the "elephant man" disease.

BACKGROUND: during informal interviews in the course of an ethnographic study on intergenerational dialogue between individuals with neurofibromatosis and their parents, many members of Canadian neurofibromatosis associations have stated that they continue to be told the condition that afflicts them or their children is "elephant man's disease." Today, even though well-established clinical criteria make it possible to diagnose and differentiate the 2 diseases, the confusion between neurofibromatosis type 1 (NF1) and elephant man's disease persists in both the media's and physicians' representations. METHODS: this was an ethnographic study in medical anthropology. DISCUSSION: some reference sources and print and online news media have all contributed to the persistence of the association between NF1 and elephant man's disease. Our observations suggest that confusing NF1 with the Elephant Man's condition harms the interests of those with NF1 and thus increases the burden of the disease. CONCLUSION: changes of attitude regarding medical teaching and the media could dispel the confusion among physicians and journalists.

Teacher report and direct assessment of preferences for identifying reinforcers for young children.

Teachers were asked to identify and rank 10 preferred stimuli for 9 toddlers, and a hierarchy of preference for these items was determined via a direct preference assessment. The reinforcing efficacy of the most highly preferred items identified by each method was evaluated concurrently in a reinforcer assessment. The reinforcer assessment showed that all stimuli identified as highly preferred via the direct preference assessment and teacher rankings functioned as reinforcers. The highest ranked stimuli in the direct assessment were more reinforcing than the teachers' top-ranked stimuli for 5 of 9 participants, whereas the teachers' top-ranked stimulus was more reinforcing than the highest ranked stimulus of the direct assessment for only 1 child. A strong positive correlation between rankings generated through the two assessments was identified for only 1 of the 9 participants. Despite poor correspondence between rankings generated through the teacher interview and direct preference assessment, results of the reinforcer assessment suggest that both methods are effective in identifying reinforcers for toddlers.

Individual variation in neural correlates of sadness in children: a twin fMRI study.

Functional neuroimaging studies show substantial individual variation in brain activation accompanying the experience of emotion, including sadness. Here we used functional magnetic resonance imaging (fMRI) in 104 pairs of 8-year-old twins (47 MZ, 57 DZ) to assess genetic-environmental contributions to individual differences in neural activation in two prefrontal cortex (PFC) areas previously shown to be involved in sadness. No genetic effects were found for any area, individual environmental factors entirely accounting for individual variation in brain activation related to sadness. Sadness being the prevailing mood in depression, these findings may be of relevance to the etiology of childhood depressive disorders.

The effects of antecedent interventions and extinction on toddlers' compliance during transitions.

We compared the effects of two antecedent strategies commonly used in early childhood settings to increase compliance during activity transitions: a warning condition, in which children were informed of the transition 2 min before it began, and a condition in which children were allowed access to a toy during the transition. Both antecedent interventions were ineffective when implemented alone; however, when these strategies were combined with extinction, improvements in compliance were observed for all children.