Preferred Terminology Research Articles

Language and terminology to describe transgender communities; Perspectives from people with lived experience

Background There is no consensus over the meaning of “transgender,” “trans and gender diverse,” and other terminology used to describe people with a gender different from the gender presumed or recorded for them at birth. We aimed to survey transgender (trans) individuals to understand lived experience perspectives on terminology. Methods An online cross-sectional survey of trans people currently living in Australia and aged ≥16 was conducted from June 2021 to April 2022. Demographic data and terminology preferences were ascertained through fixed-option and free-text questions. Results Of 1023 respondents with a median age of 30 years (IQR 24, 41), 37.1% were trans women, 34.9% were trans men, 27.6% were non-binary, and 0.4% had a culturally specific identity. There was no consensus regarding community-level terminology, with “trans/transgender and gender diverse” the most preferred term (21.9%), followed by “trans/transgender” (19.3%), and “gender diverse” (15.1%). The term “trans/transgender” was more preferred by trans women (27.9%), trans men (19.0%), respondents who had a history of or wanted gender-affirming hormone therapy (GAHT; 20.7%), and gender-affirming surgery (GAS; 20.9%), compared to non-binary respondents (8.2%), and respondents who did not want GAHT (4.9%) or GAS (13.9%). Three themes emerged from free-text responses regarding term preference: (1) Inclusivity, (2) Trans as a binary and medicalized experience, and (3) Societal understanding, accessibility, and destigmatization. Conclusion From Australian trans communities’ perspectives, the term “trans/transgender and gender diverse” was the most preferred community-level terminology to collectively describe people with a gender different from the gender presumed or recorded for them at birth. Further perspectives are needed from other cohorts internationally.

Adverse events associated with Atogepant: a FAERS-based pharmacovigilance analysis

ABSTRACT Background Migraine, a prevalent neurovascular disorder, can significantly disrupt an individual’s daily life. Atogepant (AGN-241689), an orally administered small-molecule drug classified as a calcitonin gene-related peptide receptor antagonist, is utilized for prophylactic migraine treatment. The objective of this study was to investigate adverse events (AEs) associated with atogepant through data mining in the FDA Adverse Event Reporting System (FAERS) to enhance clinical safety. Methods Data for atogepant were obtained from the FAERS database covering Q3 2021 through Q4 2023. Disproportionality analysis was employed to quantify relevant AEs associated with atogepant. Reported Ratio of Ratios (ROR) was utilized for identifying risk signals within the FAERS data. This methodology relies on the System Organ Class (SOC) and Preferred Terminology (PT) of the Medical Dictionary for Regulatory Activities (MedDRA). Results From the FAERS database, a collection of 7,991,243 reports was obtained. Among these reports, a subset of 3015 was identified as ‘primary suspected (PS)’ AEs specifically related to atogepant. AEs induced by atogepant were observed across 27 organ systems. A total of 48 significantly disproportionate Preferred Terminologies (PTs) meeting all four algorithms were identified. Conclusion Our study has identified adverse events (AEs) associated with atogepant, potentially providing crucial support for the clinical monitoring and risk identification of atogepant.

Clinical genetic counselors' use of people- and identity-first language in regard to patients' identification with disability.

The language surrounding disabilities has evolved from derogatory terms to the adoption of people-first language. However, identity-first language is being advocated for by some within the disability community. Using the preferred terminology is crucial to demonstrate respect and prevent stigmatization, especially in healthcare settings like genetic counseling, where language can impact relationships with the community. However, the specific language practices of genetic counselors and their underlying reasons are unclear. This qualitative study explored the language practices employed by genetic counselors when interacting with individuals with disabilities. Fifteen interviews were conducted with genetic counselors who had clinical experience. Reflexive thematic analysis revealed that the perceptions and practices about language used with patients and disability communities overall varied, with overarching themes of people-first language is the preferred and default language, counselors mirror patient language with some exceptions, acknowledging the evolving nature of language, recognizing differences in language preferences, and reacting to outdated terminology. These findings show the importance of continuing education to stay abreast of preferred verbiage within communities and individual patients.

Public perspective on potential treatment intervention harm in clinical trials—terminology and communication

BackgroundRandomised controlled trials (RCTs) are typically designed to determine beneficial intervention effects. In addition, an important aspect of every trial is to collect data on any potential harmful effects, with the aim of ensuring that the benefit-risk balance is appropriate. The language used by trialists to describe these potential harmful effects is inconsistent. In pharmacological trials, researchers collect adverse events; when a causal relationship is suspected adverse events are further classified as adverse reactions. Academic researchers have moved to collectively refer to these as harm outcomes; the pharmaceutical industry refer to these events as safety outcomes. In trials of complex interventions, phrases such as unintended consequences or effects are used. With the inconsistent use of terminology by researchers and the potential benefits to be gained from harmonising communications, we sought public opinion on terminology used to describe harmful effects and how these outcomes are communicated in the scientific literature, as well as in public facing material on medications.MethodsWe held two in-person public involvement meetings with public partners, in London and Aberdeen in 2023. Both meetings followed a pre-specified format. We provided a background to the topic including the information researchers collect on potential harms in clinical trials and shared examples on how this information gets presented in practice. We then discussed public partners’ perspectives on terminology used and communication of intervention harm in academic journals and in public facing materials. A summary of these discussions and the main topics raised by public partners are presented.ResultsPublic partners endorsed the use of different terms for different situations, preferring the use of ‘side-effect’ across all contexts and reserving the use of ‘harm’ to indicate more severe events. Generally, public partners were happy with the type of information presented in public facing materials but discussions revealed that presentation of information on public NHS websites led to misconceptions about harm.ConclusionThis work provides a starting point on preferred terminology by patients and the public to describe potential harmful intervention effects. Whilst researchers have tried to seek agreement, public partners endorsed use of different terms for different situations. We highlight some key areas for improvement in public facing materials that are necessary to avoid miscommunication and incorrect perception of harm.

Analysis of lumateperone data for patients with schizophrenia using related adverse events from the FDA adverse reporting system

ABSTRACT Background Our study utilized the U.S. Food and Drug Administration’s Adverse Event Reporting System (FAERS) to analyze and study the adverse event (AEs) signals of second-generation antipsychotic drug lumateperone, providing a reference for clinical safety monitoring in the treatment of schizophrenia. Methods The International Dictionary of Medical Terminology (version 26.0) was used to standardize the preferred system organ category (SOC) and preferred terminology (PT) for adverse drug events (ADE) data related to lumateperone. ADE signals were classified and described using four algorithms: reporting odds ratios (ROR), proportional reporting ratios (PRR), Bayesian confidence-propagation neural network (BCPNN) and Multinomial gamma-poisson shrinkage (MGPS). Result Among the 2542 case reports collected from the FAERS database, 1762 reports with lumateperone as a ‘principal suspect(PS)’ AEs were identified. Lumateperone-induced AEs occurred in 26 system organ categories (SOC). A total of 118 significant disproportionate preferred terms (PTs) meeting the requirements of 4 algorithms were retained, and unexpected major events, such as burning sensation, tremor, migraine etc. may also occur. The median time to onset of lumateperone-related adverse events was 9 days (interquartile range [IQR] 2–31.25 days), and most AEs occurred within the first 10 days and 1 month after initiation of lumateperone therapy. Conclusion Our research may provide a better understanding of the potential adverse events that may be caused by lumateperone and those not recorded in the drug instructions, providing valuable signals for clinical use.

Data mining and safety analysis of dual orexin receptor antagonists (DORAs): a real-world pharmacovigilance study based on the FAERS database.

Using the Food and Drug Administration Adverse Event Reporting System (FAERS) database, four signal detection methods were applied to mine adverse drug events (ADEs) related to use of dual orexin receptor antagonists (DORAs) to provide reference for safe clinical use. Data collected from Q3rd 2014 to Q4th 2023 were obtained from the FAERS database. According to the preferred terminology (PT) and systematic organ classification (SOC) of MedDRA v.26.0, the reporting odds ratio (ROR), proportional reporting ratio (PRR), multi-item gamma Poisson shrinker (MGPS), and Bayesian confidence propagation neural network (BCPNN) were used to detect ADE signals. A total of 11,857 DORAs-related adverse reactions were detected, reported with suvorexant, lemborexant, and daridorexant as the main suspected drugs was 8717584, and 2556, respectively. A higher proportion of females than males were reported (57.27% vs. 33.04%). The top 20 positive PT signals from three DORAs showed that "sleep paralysis" ranked first. "Brain fog" was stronger following daridorexant but was not detected for the other two drugs, and "sleep sex" and "dyssomnia" were stronger in suvorexant but not in the other two drugs. Additionally, some PTs occurred that were not included in drug instructions, such as "hangover" and "hypnagogic hallucination." In this study, four algorithms (ROR, PRR, BCPNN, and MGPS) were used to mine the safety signals of DORAs. We identified some potential ADE signals that can promote the rational use of DORAs and improve their safety.

Gap Analysis of Glaucoma Examination Concept Representations within Standard Systemized Nomenclature of Medicine – Clinical Terms

PurposeStandardization of eye care data is important for clinical interoperability and research . We aimed to address gaps in the representations of glaucoma examination concepts within Systemized Nomenclature of Medicine – Clinical Terms (SNOMED-CT), the preferred terminology of the American Academy of Ophthalmology. DesignStudy of data elements. MethodsStructured eye exam data fields from two electronic health records (EHR) systems (Epic Systems and Medisoft) were compared against existing SNOMED-CT codes for concepts representing glaucoma examination findings3. Glaucoma specialists from multiple institutions were surveyed to identify high-priority gaps in representation, which were discussed among the SNOMED International Eye Care Clinical Reference Group. Proposals for new codes to address the gaps were formulated and submitted for inclusion in SNOMED-CT. Main Outcome MeasuresGaps in SNOMED-CT glaucoma examination concept representations ResultsWe identified several gaps in SNOMED-CT regarding glaucoma examination concepts. A survey of glaucoma specialists identified high-priority data elements within the categories of tonometry and gonioscopy. For tonometry, there was consensus that we need to define new codes related to maximum intraocular pressure (IOP) and target IOP, and to delineate all methods of measuring IOP. These new codes were proposed and successfully added to SNOMED-CT for future use. Regarding gonioscopy, the current terminology did not include the ability to denote the gonioscopic grading system used (e.g., Shaffer or Spaeth), degree of angle pigmentation, iris configuration (except for plateau iris), and iris approach. There was also no ability to specify eye laterality or angle quadrant for gonioscopic findings. We proposed a framework for representing gonioscopic findings as observable entities in SNOMED-CT. DiscussionThere are existing gaps in the standardized representation of findings related to tonometry and gonioscopy within SNOMED-CT. These are important areas for evaluating clinical outcomes and enabling secondary use of EHR data for glaucoma research. This international, multi-institutional collaborative process enabled identification of gaps, prioritization, and development of data standards to address these gaps. ConclusionAddressing these gaps and augmenting SNOMED-CT coverage of glaucoma examination findings could enhance clinical documentation and future research efforts related to glaucoma.

Does Terminology Matter? Perspectives From People With Limb Difference, Clinicians, and Researchers

ObjectiveTo elicit the preferred terminology among people with limb difference as well as health care and/or research professionals. DesignCross-sectional survey. SettingOnline. ParticipantsA convenience sample of N=122 individuals (people with limb difference, n=65; health care and/or research professionals, n=57) completed an online survey. People were included if they (1) were aged ≥18 years; (2) self-identified as having limb difference (regardless of etiology) or as a health care or research professional (with experience working with people with limb difference); and (3) lived in the United States for most of the time in their selected role. InterventionsNot applicable. Main Outcome MeasuresImportance of terminology, preference toward person-first or identity-first terms, preferred terms, and individual perspectives on terminology preferences. ResultsMost participants identified as White (92.6%). Age significantly differed between groups (people with limb difference, 49.9±15.4y; professionals, 41.0±14.3y; P=.001). Approximately 50% of people with limb difference stated terminology was very or extremely important, compared to 70% of professionals (χ2=16.6, P=.002). While 73.7% of professionals reported a preference for person-first terminology, the sample of people with limb difference were more evenly split, as 42.9% reported a preference for identity-first terminology and 50.8% reported a preference for person-first terminology. The most frequently selected limb and population terms, respectively, were residual limb and individual/person with limb difference; however, many people with limb difference indicated they preferred “amputee” when speaking about a population. ConclusionsMost of the participants indicated terminology was very or extremely important, and both groups tended to prefer the terms residual limb (limb term) and individual/person with limb difference (population term). However, this study was not intended to recommend terminology, but rather help inform terminology choices that are centered around people with limb difference. Individuality and context should be considered when deciding terminology. Future studies should include more participants from racially/ethnically minoritized groups and people with limb difference who have dysvascular and/or congenital etiologies.

Chest pain.

Chest pain is a common symptom in the community, with underlying causes ranging from benign musculoskeletal pain to life-threatening cardiac events. It is a challenging presentation for healthcare providers, because the aetiology is not always immediately apparent. Chest pain can also cause significant anxiety for patients, leading to increased healthcare utilisation and costs. The objective of this discussion is to emphasise the importance of accurately describing the nature of chest discomfort and using appropriate terminology to facilitate an appropriate diagnostic work-up. The discussion also highlights the differences between typical and atypical chest pain and provides information about the aetiology of chest pain and management in the community. Accurately describing the nature of chest discomfort by using appropriate terminology is crucial in identifying the underlying cause of the symptom. Healthcare providers should be aware of the different terms patients might use to describe their chest discomfort and use precise and informative terms to describe the potential underlying cause of the chest pain. Atypical chest pain is often used to describe non-cardiac chest pain, but it lacks specificity. Using the terms 'cardiac,' 'possibly cardiac' or 'non-cardiac' is the preferred terminology.

Immune-related adverse events associated with nivolumab: Analysis of the FAERS database in the United States.

e24126 Background: To describe the risk of nivolumab adverse events (AEs) and to provide a reference for the safe clinical to use this drug. Methods: Nivolumab AE reports from January 2014 to December 2023 were collected from the FDA Adverse Event Reporting System, with a total of 133,12811 background patients (3,853,1848 occurrences of adverse events) included in the analysis, of which the number of patients in the target drug population was 60,625 (16,512 occurrences of adverse events). The number of patients in the target drug population was 60625 (161512 adverse events). Signals were detected using the Reporting Odds Ratio (ROR) method in conjunction with the Proportional Reporting Ratio (PRR), with signal judgment thresholds typically using a ≥ 3, and the lower limit of the 95% confidence interval for the ROR being greater than 1, The ROR and PRR (using a ≥ 3, and the lower limit of the 95% confidence interval for the ROR being greater than 1) were compared to the PRR. When ROR and PRR (using a ≥ 3, PRR ≥ 2 and chi-square ≥ 4 as thresholds) were used in combination, signal crossover between the two methods was defined as a positive risk signal. The preferred system organ classification (SOC) and preferred terminology (PT) of the current version of the MedDRA dictionary were used to classify AEs, and the top 30 PTs in terms of AE signal intensity were selected for analysis. Results: A total of 161,512 reports of AE with nivolumab as the first suspected drug were collected, involving 5174 PTs. A total of 995 positive PT signals were calculated using the combined ROR and PRR assay. The top 5 risk signals induced by nivolumab were immune-mediated small bowel colitis (ROR (95% CI) 114.42 (103.26-126.79), PRR (Chi-Square) 114.04 (40959.8)), pituitary gland inflammation (ROR (95% CI) PRR (Chi-Square) 88.60 ( 79.17-99.15)PRR(Chi-Square)88.37(26256.6)), fulminant type 1 diabetes mellitus (ROR(95% CI)213.73(183.24-249.30),PRR(Chi-Square)213.33(34295.5)) immune-mediated pneumonias (ROR(95% CI) 114.08 (99.42-130.89),PRR(Chi-Square) 113.87 (22764.4)), immune-mediated hepatitis (ROR(95% CI) 86.09 (75.08-98.71),PRR(Chi-Square) 85.94 (17262.8)).The top 5 SOCs were systemic diseases and various reactions at the site of administration in 25447 cases (15.76%), gastrointestinal disorders in 25447 cases(15.76%), gastrointestinal disorders 16,282 cases (10.08%), various types of injuries, poisoning and operational complications 12,510 cases (7.57%), respiratory, thoracic and mediastinal disorders 11,572 cases (7.16%), as well as benign, malignant, and tumors of undetermined nature (including cystic and polypoid) 10,486 cases (6.49%). Conclusions: The risk signal of autoimmune diseases caused by nivolumab is relatively strong, and it is recommended that clinicians should pay attention to the possible autoimmune diseases of various systems during the use of the drug.

Beta-Catenin Alterations in Postchemotherapy Yolk Sac Tumor, Postpubertal-Type With Enteroblastic Features

Postchemotherapy postpubertal-type yolk sac tumors (YST) with glandular and solid phenotypes are aggressive and commonly resistant to systemic chemotherapy. These neoplasms show morphologic features that significantly overlap with those of somatic carcinomas with “enteroblastic” or “fetal” phenotype (the preferred terminology depends on the site of origin). They often present as late or very late recurrences, and their diagnosis is challenging because they frequently affect patients in an age group at risk for carcinomas of somatic origin. Recently, we incidentally identified examples of postchemotherapy glandular and solid YST with “enteroblastic” phenotypes and nuclear expression of beta-catenin, prompting us to further evaluate the prevalence of this phenomenon. We found nuclear expression of beta-catenin in 10 (29%) of 34 such tumors. A subset of cases with nuclear beta-catenin expression was further analyzed with a DNA sequencing panel (n = 6) and fluorescence in situ hybridization for isochromosome 12p [i(12p); n = 5]. Sequencing identified exon 3 CTNNB1 variants in 3 (50%) of 6 analyzed cases, and fluorescence in situ hybridization was positive for i(12p) in 5 of 5 cases. In conclusion, a significant subset of postchemotherapy YST with glandular or solid architecture and “enteroblastic” phenotype demonstrates beta-catenin alterations, suggesting that activation of Wnt signaling may play a role in the progression of these neoplasms. Moreover, nuclear beta-catenin expression in these tumors represents a potential diagnostic pitfall given that carcinomas of true somatic origin with overlapping morphology may also be positive for this marker.

Terminologica Anatomica2: are we working toward achieving a unified consensus based anatomical terminology?

This paper focuses on the authors perspectives of the terminology developed by the Gross and Clinical Anatomy Working Group for Terminologica Anatomica2. Terminologica Anatomica2 represents a great deal of work by the Gross and Clinical Anatomy Working Group of the Federative International Program for Anatomical Terminology. Listing ofsynonyms and eponymscan be of great utility in terms of historical translation. However, the initial goal of achieving an international standard for anatomical terminology derived through a scholarly, consensus based process has been lost in Terminologica Anatomica2 as it provides a variety of choices that can be used to name a particular structure, in contrast to Terminologica Anatomica1 where preferred terminology is explicitly stated.

Analysis of clinical factors associated with Kampo formula-induced pseudoaldosteronism based on self-reported information from the Japanese Adverse Drug Event Report database.

Drug-induced pseudoaldosteronism is a typical adverse effect of Kampo formulas. Previous research described the potential risks of Kampo formula-linked pseudoaldosteronism. However, few studies assessed the risk factors using a real-world database and a data-mining approach. Using the Japanese Adverse Drug Event Report database, we extracted pseudoaldosteronism reports for 148 Kampo formulas covered by Japanese national health insurance. Adverse events were decided according to the preferred terminology of the Medical Dictionary for Regulatory Activities/Japanese version 25.1. We calculated reporting odds ratio (RORs) and identified Kampo formulas as suspected causes of pseudoaldosteronism. Moreover, we evaluated clinical factors associated with Kampo formula-induced pseudoaldosteronism via logistic regression. From April 2004 to November 2022, 6334 adverse events related to the Kampo formulas were reported. We selected 2471 reports containing complete clinical data, including 210 reports on pseudoaldosteronism. In the pseudoaldosteronism group, 69.0% of patients were female, and 85.2% were ≥70 years old. The formulas most commonly associated with pseudoaldosteronism were Shakuyakukanzoto, Yokukansan, and Ryokeijutsukanto (ROR [95% confidence interval {CI}] = 18.3 [13.0-25.9], 8.1 [5.4-12.0], and 5.5 [1.4-21.9], respectively). Logistic analysis identified female sex (odds ratio [OR] [95% CI] = 1.7 [1.2-2.6]; P = 0.006), older age (≥70, 5.0 [3.2-7.8]; P < 0.001), low body weight (<50 kg, 2.2 [1.5-3.2]; P < 0.001), diuretics usage (2.1 [1.3-4.8]; P = 0.004), hypertension (1.6 [1.1-2.4]; P = 0.014), and dementia (7.0 [4.2-11.6]; P < 0.001) as pseudoaldosteronism-related factors. Additionally, the daily Glycyrrhiza dose (OR = 2.1 [1.9-2.3]; P < 0.001) and duration of administration (>14 days, OR = 2.8 [1.7-4.5]; P < 0.001) were associated with adverse events. We did not observe an interaction between aging and hypertension. Careful follow-up is warranted during long-term Glycyrrhiza-containing Kampo formula use in patients with multiple clinical factors for pseudoaldosteronism.

Towards Standardizing Nomenclature in Huntington's Disease Research.

The field of Huntington's disease research covers many different scientific disciplines, from molecular biology all the way through to clinical practice, and as our understanding of the disease has progressed over the decades, a great deal of different terminology has accrued. The field is also renowned for its collaborative spirit and use of standardized reagents, assays, datasets, models, and clinical measures, so the use of standardized terms is especially important. We have set out to determine, through a consensus exercise involving basic and clinical scientists working in the field, the most appropriate language to use across disciplines. Nominally, this article will serve as the style guide for the Journal of Huntington's Disease (JHD), the only journal devoted exclusively to HD, and we lay out the preferred and standardized terminology and nomenclature for use in JHD publications. However, we hope that this article will also serve as a useful resource to the HD research community at large and that these recommended naming conventions will be adopted widely.

DEMENTIA CAREGIVERS, BURDEN, AND EMERGENCIES

Abstract Caregivers of people living with dementia face multiple barriers, including social isolation, mental health problems, limited time for themselves, and limited support services. Navigating emergencies, including hospitalization, financial loss, and natural disasters, can exacerbate the burden that dementia caregivers face. This study examined dementia caregivers’ perspectives on burden, emergencies, and emergency preparedness. Semi-structured interviews were conducted with a predominantly female sample of fourteen dementia caregivers living in Florida. Data were analyzed using thematic analysis methods to define codes and identify themes. Results showed all dementia caregivers identified the term burden as having a negative connotation about their experience and the person living with dementia. Dementia caregivers predominantly stated that they cared for their family members out of love and a sense of responsibility. Findings also showed individual and caregiving experiences (e.g., being a single mom or having a previous caregiving role) prepared dementia caregivers to define and encounter emergencies. Understanding caregivers’ perspectives of burden, emergencies, and emergency preparedness is essential to developing evidence-based interventions and support services that aim to mitigate the adverse effects of emergencies on caregivers. Implications of using preferred terminology and recommendations for providing person-centered emergency planning will be discussed.

Recommendations for risk allele evidence curation, classification, and reporting from the ClinGen Low Penetrance/Risk Allele Working Group

PurposeGenetic variants at the low end of the penetrance spectrum have historically been challenging to interpret because their high population frequencies exceed the disease prevalence of the associated condition, leading to a lack of clear segregation between the variant and disease. There is currently substantial variation in the classification of these variants, and no formal classification framework has been widely adopted. The Clinical Genome Resource Low Penetrance/Risk Allele Working Group was formed to address these challenges and promote harmonization within the clinical community. MethodsThe work presented here is the product of internal and community Likert-scaled surveys in combination with expert consensus within the Working Group. ResultsWe formally recognize risk alleles and low-penetrance variants as distinct variant classes from those causing highly penetrant disease that require special considerations regarding their clinical classification and reporting. First, we provide a preferred terminology for these variants. Second, we focus on risk alleles and detail considerations for reviewing relevant studies and present a framework for the classification these variants. Finally, we discuss considerations for clinical reporting of risk alleles. ConclusionThese recommendations support harmonized interpretation, classification, and reporting of variants at the low end of the penetrance spectrum.

Frozen in Time, a Focused Review of Autism Prevalence in Canadian Indigenous Communities.

The unprecedented global continuous rise in autism prevalence is often referred to as a Pandemic while its parallel cost increase to society portrays a Tsunami. Autism data originates mostly from industrialized High-Income geopolitical regions in Europe, North America, and Asian regions. Although efforts to determine autism data from regions in Low and Mid-economies are ongoing, prevalence information from geographically remote and economically vulnerable communities within the privileged regions is largely undetermined, as is the case of the Canadian Indigenous communities, the First Nations, Inuit, and Métis highlighted in this focused review. The underlying theoretical approach adopted here is Transcultural Psychiatry with its emphasis on Context including sociopolitical circumstances, considered the gateway to understanding health, illness, and recovery in groups and individuals. Accordingly, the review includes a concise relevant government system description and history of the relations with Indigenous peoples to provide context to present indigenous relations to Canadian government agencies. Scores in these communities face a myriad of survival challenges encompassing meagre health resources and services. Establishing autism prevalence data in these communities are exceedingly difficult due to multiple factors. While prominent among them are their strong ties to traditional approaches to health, illness, and autism conceptualization, the crucial obstacle is Crown and Provincial government authorities' and agencies' historically rooted colonial response to the needs of families with autistic members. It embodies a posture of infantilization, an attitude that is "frozen in time" in the approach, practice, accommodations, and services for these families. The review provides the preferred autism terminology, information sources, article flow, and Future Directions, all found in the Introduction's first paragraphs.

Exploring individuals’ perceptions and acceptability of a ‘wait and see’ approach for managing self-limiting illnesses: A qualitative study

ObjectiveTo explore individuals’ perceptions and acceptability of a ‘wait and see’ approach, and phrases to describe this, for managing self-limiting illnesses (those that typically resolve spontaneously). MethodsSemi-structured interviews with a purposive sample of 30 Australians. Two researchers independently conducted a thematic analysis of interview transcripts, and all authors agreed on final themes. ResultsFour themes emerged: Interpretation of what ‘wait and see’ meant varied and encompassed whether individuals had already sought medical care; Individuals’ experiences and circumstances influenced the acceptability of a ‘wait and see’ approach; Symptom management was perceived as the most reassuring phrase to describe this approach; Individuals highly valued clear communication about a ‘wait and see’ approach and wanted a collaborative and action-oriented plan for the waiting period. ConclusionIndividuals generally accepted a ‘wait and see’ approach, although less so for some illnesses and in some circumstances. They wanted it at least presented as an option when appropriate, with ‘symptom management’ as the preferred terminology. Clear communication and collaborative decision-making were valued. Practice implicationsWhen ‘wait and see’ is a reasonable option, clinicians should communicate this to patients, support them in decision-making, and provide a plan for the waiting period if the option is chosen.

Guidance to best tools and practices for systematic reviews.

Data continue to accumulate indicating that many systematic reviews are methodologically flawed, biased, redundant, or uninformative. Some improvements have occurred in recent years based on empirical methods research and standardization of appraisal tools; however, many authors do not routinely or consistently apply these updated methods. In addition, guideline developers, peer reviewers, and journal editors often disregard current methodological standards. Although extensively acknowledged and explored in the methodological literature, most clinicians seem unaware of these issues and may automatically accept evidence syntheses (and clinical practice guidelines based on their conclusions) as trustworthy. A plethora of methods and tools are recommended for the development and evaluation of evidence syntheses. It is important to understand what these are intended to do (and cannot do) and how they can be utilized. Our objective is to distill this sprawling information into a format that is understandable and readily accessible to authors, peer reviewers, and editors. In doing so, we aim to promote appreciation and understanding of the demanding science of evidence synthesis among stakeholders. We focus on well-documented deficiencies in key components of evidence syntheses to elucidate the rationale for current standards. The constructs underlying the tools developed to assess reporting, risk of bias, and methodological quality of evidence syntheses are distinguished from those involved in determining overall certainty of a body of evidence. Another important distinction is made between those tools used by authors to develop their syntheses as opposed to those used to ultimately judge their work. Exemplar methods and research practices are described, complemented by novel pragmatic strategies to improve evidence syntheses. The latter include preferred terminology and a scheme to characterize types of research evidence. We organize best practice resources in a Concise Guide that can be widely adopted and adapted for routine implementation by authors and journals. Appropriate, informed use of these is encouraged, but we caution against their superficial application and emphasize their endorsement does not substitute for in-depth methodological training. By highlighting best practices with their rationale, we hope this guidance will inspire further evolution of methods and tools that can advance the field.

Recognising the recovering addict with Honneth: an intervention into the stigmatising language debate in the alcohol and other drugs field

PurposeThe purpose of this paper is to assess the impact of the recommendation to replace identity-first language with person-first language on people who self-identify as recovering addicts as part of a recovery programme. Narcotics Anonymous (NA) will be used to illustrate the contextualised nature of the recovering addict identity.Design/methodology/approachTo demonstrate the value of the recovering addict identity and social relations in NA, this paper draws on Axel Honneth’s theory of mutual recognition and self-formation.FindingsPerson-first language overlooks the significance of identity-first language to people in 12-step recovery. This oversight is linked to the logic of stigma reduction which excludes all identity-first language by association rather than assessing the impact of such terms on a case-by-case basis. Honneth’s theory is used to show how the recovering addict identity facilitates self-confidence and self-esteem through relations of mutual recognition in NA.Research limitations/implicationsThe argument excludes people who identify as recovering addicts, but do not attend 12-step groups. Further research would be needed to understand how the recommendation to use person-first language instead of identity-first language impacts upon other recovery communities and pathways.Practical implicationsThe recommendation to replace identity-first language with person-first language might result in 12-step fellowships becoming marginalised within the broader academic and policy and practice arena. Language preferences can become a contentious issue when 12-step groups and their members enter the wider recovery arena where their preferred terminology is viewed as stigmatising and dehumanising.Originality/valueTo the best of the author’s knowledge, this is the first article to propose an alternative theoretical framework to stigma reduction for judging morally appropriate language in the alcohol and drugs field.