Improving AD outcomes in Indigenous communities: Why culture and language matter
Dr. Carolyn Jack says overcoming communication barriers to support Indigenous patient education is key to improving outcomes (Issue #499, 1,400 words, 7 minutes)
Treating atopic dermatitis (AD) in Indigenous communities requires building relationships, Dr. Carolyn Jack told delegates to the first annual Indigenous Skin Spectrum Global Summit on April 5 in Montreal. Developing these relationships involves addressing generational trauma and bringing together Western research knowledge with Indigenous knowledge, beliefs, and methods of care.
Dr. Jack is an assistant professor of dermatology at McGill University in Montreal and the founder of the McGill University Hospital Network Centre of Excellence for Atopic Dermatitis, the first tertiary care centre in Canada dedicated to adult AD.
Dr. Jack said that the AD Centre of Excellence services half of the province of Québec. The diverse population and the geographic distance between Indigenous communities make dealing with conditions such as AD a challenge. The Canadian Institutes of Health Research released a strategy for patient-oriented research that focused on improving outcomes through evidence-informed care using a partnership-based approach.
This includes such initiatives as hosting Eczema Schools that are also accessible to patients in remote rural and northern communities, said Dr. Jack. McGill also started a patient advisory committee to educate patients and physicians. She said patients helped her understand how they want to navigate knowledge and what questions physicians should ask.
Dr. Jack said building relationships with Indigenous communities requires addressing generational trauma and working with Indigenous-led health systems and beliefs. Using this approach has led to weaving a research interface which brings together Western research knowledge with Indigenous knowledge and methods of care, she said. This involves integrating the physical, mental, emotional, and spiritual aspects of knowledge gathering and sharing.
Culturally adapting educational materials involves translating them into different languages, but the proper words may not exist in all Indigenous languages, she said. There may, for example, be no word for eczema. Language barriers can lead to difficulties in diagnosis, especially when skin conditions such as AD and scabies may have similar symptoms.
Bottom Line: Using a partnership-based approach to treating Indigenous patients and medical research is essential. This involves bringing together Western research knowledge with Indigenous knowledge and methods of care. Building relationships with Indigenous communities requires addressing generational trauma and working with Indigenous-led health systems and beliefs. Translation into Indigenous languages may be difficult as those languages may not have words such as eczema.
From the literature on atopic dermatitis in skin of colour
Dupilumab treatment improves lichenification in atopic dermatitis in different age and racial groups
To assess the efficacy of dupilumab vs placebo in AD lichenification by age and race-defined groups, researchers conducted a post hoc analysis of pooled data from five clinical trials of dupilumab. The sample included data on 1,997 patients aged six to 88 years of all races with moderate to severe AD.
The placebo/dupilumab randomized groups the investigators analyzed by age (n=1,535) included 123/244 children, 85/166 adolescents, and 460/457 adults. The groups analyzed by self-reported racial background (n=1,902) included 132/234 Asian, 74/112 Black/African American, and 427/923 White patients.
The investigators found that dupilumab treatment resulted in nominally significant reductions compared to placebo in Global Individual Signs Score measurements of lichenification from week one in adults and adolescents to week two in children through week 16. They observed similar improvements in lichenification measured by SCORing Atopic Dermatitis and Eczema Area and Severity Index. By week 16, dupilumab significantly improved lichenification, with nominal significance vs placebo across all racial groups.
Targeted filaggrin gene (FLG) sequencing: A pilot study among Indian children with atopic dermatitis
This study examines the prevalence and characteristics of filaggrin mutations in Indian children affected with AD to attempt a genotype-phenotype correlation.
For this pilot study, investigators recruited Indian children with AD, aged four to 16 years, attending the Pediatric Dermatology outpatient department between Feb. and Sept. 2022. Researchers used long-range polymerase chain reaction target enrichment and next-generation sequencing to sequence the complete FLG gene from peripheral blood samples. They then analyzed and categorized the identified variants.
Among the 30 recruited children with AD, investigators found 28 genetic variants in exon 3 of FLG in 19 (63%) patients. These variants were classified as pathogenic (6, 21.4%), likely pathogenic (3, 10.7%), benign (16, 57.1%), and variant of uncertain significance (3, 10.7%). Among the nine significant variants, 4 (45%) were novel. Although the patients with filaggrin variants had a higher prevalence of positive family history of atopy, other allergic diseases in the child, higher IgE levels, and a higher percentage of severe AD, the difference was not statistically significant.
While the authors note their small sample size is a limitation, they say in their conclusions the spectrum of identified gene variants did not reflect the known FLG hotspots from other ethnicities. As a result, there is a need for larger studies to determine the relevant hotspots in the Indian population.
Race and appointment availability influence continuity of care for chronic inflammatory skin disease: A cross-sectional study of United States practice data
Researchers identified predictors of continuity of care for chronic inflammatory skin disease (CISD) patients across demographic groups and healthcare practice types in the United States.
To do this, they conducted a cross-sectional study of National Ambulatory Medical Care Survey data on U.S. outpatient CISD visits between 2011 and 2019, including a primary diagnosis of psoriasis, atopic dermatitis, acne, or rosacea. A total of 2,747 visits, estimating 75.4 (95% CI: 70.9-79.9) million CISD encounters were identified during the period.
Multivariate regression showed that Black patients had lower odds of establishing continuity of care than White patients (p<0.01). Practices offering same-day visits had greater odds for patients with continuity (p<0.05). Conversely, practices with lower overall wait times (≤1 month) were less likely to be associated with continuity of care (p<0.01).
The authors conclude that patient race and appointment availability predict differences in continuity of care, suggesting vulnerabilities may exist for some CISD patients requiring follow-up.
VIDEO: Allergic Diseases in the Asian American Population
Anna Chen Arroyo, MD, MPH, discusses the latest research findings on allergic diseases among different Asian American ethnic groups and the impact of allergic diseases in these communities. Dr. Arroyo is a Clinical Associate Professor and Section Chief of Allergy, Asthma, and Immunodeficiency in the Division of Pulmonary, Allergy, and Critical Care Medicine in the Department of Medicine at Stanford University School of Medicine in California.
At the intersection of skin and society
Indigenous Services Canada's (ISC’s) headquarters takes, on average, more than one year to process applications for Indian status, according to a new report by Canada's auditor general, reports CBC News.
The audit found that from 2019 to 2024, more than 80% of applications processed by ISC headquarters exceeded the service standard to make a decision within six months. The average processing time was just less than 16 months.
The report notes the long wait times are a barrier to accessing vital services such as on-reserve housing, health benefits, and financial aid for post-secondary schooling.
Additionally, the report says Indigenous Services Canada headquarters and its regional offices made decisions on approximately 140,000 registration applications from April 2019 to March 2024. Just over 58,000 of these were related to Bill S-3 amendments to the Indian Act, meant to rectify sex-based inequities.
There was a backlog of almost 12,000 applications, with nearly 1,500 delayed more than two years.
The report recommends that ISC examine its application processing to find ways to reduce wait times and establish a plan to reduce the backlog.
Regional offices, which process only non-complex applications, made about 40% of the application decisions during the time frame. There, decisions were made the same day for 22% of applications. On average, decisions took 44 days.
The report also found the department was unable to show that most officials who were making final decisions on applications had undergone the required training and certification.
Another recommendation from the audit is for the ISC to fully implement the policies it has in place for processing applications, including training and certification for those making decisions.
This week
June 16 is the Day of the African Child
June 19 is Juneteenth in the U.S.
June 21 is National Indigenous Peoples Day in Canada
Something to think about in the week ahead . . .
—David M. Kelley, (1951-present), U.S. engineer and businessman, co-founder of the design firm IDEO.
Next week
Saskatoon-based pathologist Dr. Archana Kakadekar describes how differences in skin structure in darker skin types result in different trauma and inflammation responses.
Next week: 500th issue survey
Help Skin Spectrum Weekly serve you better. For the 500th issue of Skin Spectrum Weekly, on June 23, readers will be invited to complete a brief online survey about the newsletter’s features. Feedback collected by the survey will be used to better fit the topics and format of Skin Spectrum Weekly to your needs. Please watch for it.
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Wow, we need more of this in the world! Thank you for drawing attention to such a key topic!