Community- and Patient-Partner Engagement in Women's Cardiovascular Disease Research: A Rapid Review of the Evidence.

The primary objective of this rapid review is to describe community-partner and patient-partner engagement in women's cardiovascular disease (CVD) research. Secondary objectives are to: (i) describe the phase of the research in which community and patient partners were engaged; (ii) define the level of engagement at each research phase; and (iii) make recommendations for future engagement of community and/or patient partners in women's CVD research. Rapid review guidelines recommended by the Cochrane Rapid Reviews Methods Group and Tricco et al. were used to search 5 databases using medical subject headings (MeSH) and/or keywords. Participants included women (cis and trans) aged > 18 years who had ischemic heart disease, heart failure, or stroke. A risk of bias assessment was not undertaken. Findings are summarized and/or clustered as community-based participatory research, or patient-oriented and/or patient-partner research. Our search yielded 39,998 titles and abstracts. Of these, 35 were included in a final narrative synthesis, comprising data from 474 community and/or patient partners, including 417 (88%) women. Over 85% of community partners collaborated in the design and/or planning and implementation of women's CVD research; most originated in the US; only one originated in Canada. Most patient-oriented and patient-partner research originated in Canada. However, less than 50% of patient partners collaborated in any phase of research. Sex, gender, race, and ethnicity were rarely reported. Results suggest negligible community and inadequate patient-oriented and/or patient-partner engagement in women's CVD research in Canada. Improved CVD outcomes for women may be achieved with better community- and patient-partner collaboration across all phases of research, genders, race, and ethnicities.

L'objectif principal de cette brève revue de littérature est de décrire l'engagement des partenaires communautaires et des patients partenaires dans la recherche sur les maladies cardiovasculaires (MCV) chez les femmes. Les objectifs secondaires sont les suivants (i) décrire la phase de la recherche dans laquelle la communauté et les patients partenaires ont été impliqués; (ii) définir le niveau d'engagement à chaque phase de la recherche; et (iii) formuler des recommandations pour l'engagement futur des partenaires communautaires et/ou des patients partenaires dans la recherche sur les MCV chez les femmes. Les lignes directrices pour effectuer des revues de littérature rapides recommandées par le Cochrane Rapid Reviews Methods Group et Tricco et coll. ont été utilisées pour effectuer des recherches dans 5 bases de données à l'aide de rubriques médicales sous-jacentes (MeSH) et/ou de mots-clés. Les participants étaient des femmes (cis et trans) âgées de plus de 18 ans et ayant eu une cardiopathie ischémique, une insuffisance cardiaque ou un accident vasculaire cérébral. Aucune évaluation du risque de biais n'a été entreprise. Les résultats sont résumés et/ou regroupés en tant que recherche communautaire participative, ou recherche orientée vers le patient et/ou recherche avec partenariat patient. Notre recherche a collecté 39 998 titres et résumés. Parmi ceux-ci, 35 ont été inclus dans une synthèse narrative finale, comprenant des données provenant de 474 partenaires communautaires et/ou patients, dont 417 (88%) femmes. Plus de 85% des partenaires communautaires ont collaboré à la conception et/ou à la planification et à la mise en œuvre de la recherche sur les MCV chez les femmes; la plupart étaient originaires des États-Unis; une étude seulement était originaire du Canada. La plupart des recherches axées sur le patient et sur les patients partenaires ont été menées au Canada. Cependant, moins de 50 % des patients partenaires ont collaboré à l'une ou l'autre phase de la recherche. Le sexe, le genre, la race et l'origine ethnique étaient rarement rapportés. Les résultats suggèrent un engagement négligeable des communautés et un engagement insuffisant des patients et/ou des patients partenaires dans la recherche sur les MCV chez les femmes au Canada. Une meilleure collaboration entre la communauté et les patients partenaires à toutes les étapes de la recherche, quel que soit le sexe, la race ou l'origine ethnique, permettrait d'améliorer les résultats de la recherche sur les MCV chez les femmes.

The Canadian Women's Heart Health Alliance ATLAS on the Epidemiology, Diagnosis, and Management of Cardiovascular Disease in Women - Chapter 7: Sex, Gender, and the Social Determinants of Health.

Women vs men have major differences in terms of risk-factor profiles, social and environmental factors, clinical presentation, diagnosis, and treatment of cardiovascular disease. Women are more likely than men to experience health issues that are complex and multifactorial, often relating to disparities in access to care, risk-factor prevalence, sex-based biological differences, gender-related factors, and sociocultural factors. Furthermore, awareness of the intersectional nature and relationship of sociocultural determinants of health, including sex and gender factors, that influence access to care and health outcomes for women with cardiovascular disease remains elusive. This review summarizes literature that reports on under-recognized sex- and gender-related risk factors that intersect with psychosocial, economic, and cultural factors in the diagnosis, treatment, and outcomes of women's cardiovascular health.

Les profils de facteurs de risque, les facteurs sociaux et environnementaux, le tableau clinique, le diagnostic et le traitement des maladies cardiovasculaires montrent des différences importantes entre les femmes et les hommes. Il est plus probable que les femmes expérimentent des problèmes de santé complexes et multifactoriels, qui sont souvent en relation avec les disparités dans l'accès aux soins, la prévalence des facteurs de risque, les différences biologiques entre les sexes, les facteurs liés au genre et les facteurs socioculturels. De plus, la sensibilisation à la nature et à la relation intersectionnelles des déterminants socioculturels de santé, notamment les facteurs liés au sexe et au genre, qui influencent l'accès aux soins et les résultats cliniques des femmes atteintes d'une maladie cardiovasculaire demeure insaisissable. La présente revue résume la littérature qui porte sur les facteurs de risque liés au sexe et au genre peu reconnus qui se recoupent aux facteurs psychosociaux, économiques et culturels dans le diagnostic, le traitement et les résultats cliniques en lien avec la santé cardiovasculaire des femmes.

The Canadian Women's Heart Health Alliance Atlas on the Epidemiology, Diagnosis, and Management of Cardiovascular Disease in Women - Chapter 4: Sex- and Gender-Unique Disparities: CVD Across the Lifespan of a Woman.

Women have unique sex- and gender-related risk factors for cardiovascular disease (CVD) that can present or evolve over their lifespan. Pregnancy-associated conditions, polycystic ovarian syndrome, and menopause can increase a woman's risk of CVD. Women are at greater risk for autoimmune rheumatic disorders, which play a role in the predisposition and pathogenesis of CVD. The influence of traditional CVD risk factors (eg, smoking, hypertension, diabetes, obesity, physical inactivity, depression, anxiety, and family history) is greater in women than men. Finally, there are sex differences in the response to treatments for CVD risk and comorbid disease processes. In this Atlas chapter we review sex- and gender-unique CVD risk factors that can occur across a woman's lifespan, with the aim to reduce knowledge gaps and guide the development of optimal strategies for awareness and treatment.

Les femmes présentent des facteurs de risque de maladies cardiovasculaires (MCV) uniques, liés au sexe et au genre, qui peuvent se manifester ou évoluer tout au long de leur vie. Les troubles médicaux associés à la grossesse, le syndrome des ovaires polykystiques et la ménopause peuvent augmenter le risque de MCV chez une femme. Les femmes sont plus exposées aux troubles rhumatologiques auto-immuns, qui jouent un rôle dans la prédisposition et dans la pathogenèse des MCV. L'influence des facteurs de risque traditionnels pour les MCV (par exemple, le tabagisme, l'hypertension, le diabète, l'obésité, la sédentarité, la dépression, l'anxiété et les antécédents familiaux) est plus importante chez les femmes que chez les hommes. Enfin, il existe des différences entre les sexes dans la réponse aux traitements du risque de MCV et des processus pathologiques comorbides. Dans ce chapitre de l'Atlas, nous passons en revue les facteurs de risque de MCV propres au sexe et au genre qui peuvent survenir tout au long de la vie d'une femme, dans le but de réduire les lacunes dans les connaissances et d'orienter l'élaboration de stratégies optimales de sensibilisation et de traitement.

"Her Heart Matters"-Making Visible the Cardiac Pain Experiences of Women with Physical Disabilities and Heart Disease: A Qualitative Study.

BACKGROUND: Women with physical disabilities are faced with challenges in many aspects of life-education, work, income, relationships, as well as their general health. These women are at a greater risk of developing heart disease. This study aimed to explore the cardiac pain experiences of women with physical disabilities and heart disease within a Canadian healthcare context. METHODS: In this qualitative study, 8 women with physical disabilities and heart disease from across Canada were interviewed. They were asked about their pre-, peri-, and post-diagnostic experiences in the Canadian healthcare system. Transcripts of the interviews were analyzed using a hermeneutic phenomenological approach inspired by Ricoeur. RESULTS: Two main themes were uncovered in the analysis of the transcripts, as follows: (i) the diagnostic journey; and (ii) life with cardiac symptoms and a disability. The women indicated that they had experienced difficulties in utilizing the Canadian healthcare system prior to receiving a cardiac diagnosis, including long waitlists, expensive and unreliable transport, issues with accessibility, and dealing with providers' attitudinal barriers regarding disability. Receiving a diagnosis was challenging due to poor relationships with healthcare providers; however, having a same-sex provider seemed essential to receiving adequate care. Self-managing a disability and heart disease had significant physical and psychological impact, which was lightened by financial and social supports, modified lifestyle choices, and self-advocacy. CONCLUSIONS: Women with physical disabilities are often forgotten in discussions encompassing equity and inclusion. The participants' experiences offer insight into what changes are needed within the Canadian healthcare system in order to improve outcomes for these women.

CONTEXTE: Les femmes qui présentent une incapacité physique doivent composer avec des défis dans de nombreux aspects de leur vie, notamment en ce qui touche l'éducation, le travail, le revenu, les relations et la santé en général. Le risque de cardiopathie est plus important dans leur cas. Cette étude visait à examiner comment la douleur cardiaque est vécue par les femmes présentant une incapacité physique et une cardiopathie dans le contexte des soins de santé au Canada. MÉTHODOLOGIE: Dans le cadre de cette étude qualitative, huit femmes présentant une incapacité physique et une cardiopathie ont participé à des entrevues menées à l'échelle du Canada. Elles ont été interrogées sur leurs expériences au sein du système de santé canadien au cours des périodes précédant, entourant et suivant le diagnostic. Les transcriptions des entrevues ont été analysées en fonction d'une approche phénoménologique herméneutique inspirée par Ricœur. RÉSULTATS: Deux grands thèmes ressortent de l'analyse des transcriptions, à savoir : (i) le parcours diagnostique; (ii) la vie avec des symptômes cardiaques et une incapacité physique. Les femmes interrogées ont indiqué qu'elles avaient éprouvé des difficultés dans leur parcours au sein du système de santé canadien avant de recevoir un diagnostic en cardiologie, évoquant à cet égard les longues listes d'attente, les services de transport coûteux et peu fiables, les problèmes d'accessibilité et les obstacles liés à l'attitude des fournisseurs de soins vis-à-vis de l'incapacité physique. Le fait de recevoir un diagnostic a été éprouvant en raison de rapports difficiles avec les fournisseurs de soins de santé; cependant, le fait d'avoir un fournisseur de soins de sexe féminin semblait être une condition essentielle à une prestation de soins adéquate. L'autoprise en charge d'une incapacité physique et d'une cardiopathie a eu des répercussions physiques et psychologiques importantes qui ont pu être allégées par le soutien financier et social, des modifications des habitudes de vie et l'autonomie sociale. CONCLUSIONS: Les femmes qui présentent une incapacité physique sont souvent laissées pour compte dans les discussions portant sur l'équité et l'inclusion. Le vécu des participantes donne un aperçu des changements qui doivent être apportés au sein du système de santé canadien afin d'améliorer les résultats chez ces femmes.

User-centered design features for digital health applications to support physical activity behaviors in solid organ transplant recipients: A qualitative study.

INTRODUCTION: Digital health tools may be effective in engaging solid organ transplant (SOT) recipients in physical activity (PA). This study examined the perspectives of SOT recipients regarding PA, and desired features for digital health tools. METHODS: Semi-structured interviews were used to explore perspectives of SOT recipients about barriers and motivators to physical activity, and core features of a digital health tool to support PA. Interviews were analyzed via thematic analysis. RESULTS: Participants included 21 SOT recipients (11 men, 10 women, 21-78 years, 1.5-16 years post-transplant) from various organ groups (four heart, five kidney, five liver, three lung, and four multi-organ). Barriers to PA included risk aversion, managing non-linear health trajectories, physical limitations and lack of access to appropriate fitness training. Facilitators of PA included desire to live long and healthy lives, renewed physical capabilities, access to appropriate fitness guidelines and facilities. Desired features of a digital health tool included a reward system, affordability, integration of multiple functions, and the ability to selectively share information with healthcare professionals and peers. CONCLUSIONS: SOT recipients identified the desired features of a digital health tool, which may be incorporated into future designs of digital and mobile health applications to support PA in SOT recipients.

The Canadian Women's Heart Health Alliance Atlas on the Epidemiology, Diagnosis, and Management of Cardiovascular Disease in Women-Chapter 3: Patient Perspectives.

In recent years, public awareness campaigns have targeted knowledge gaps and inequities in care while focusing on the unique female experience and heightened cardiovascular disease (CVD) risk profile. Recognizing and understanding the sex and gender constructs, barriers, facilitators, and factors that affect access, treatment, and recovery after an acute cardiac event from the unique patient perspective is a key step in transforming clinical practice and care patterns. The aim of this atlas chapter is to provide a knowledge review and to identify gaps regarding the experience of living with CVD from the perspective of the female survivor. The sections are as follows: (1) experiencing and living with CVD as a woman; (2) "stopped at the gate": barriers to accessing acute cardiovascular care; and (3) action items to "open the gate" to women: what our patients want and need. The final section culminates with targeted recommendations stemming from recent literature and most importantly, from women with the lived experience of CVD.

Depuis quelques années, des campagnes de sensibilisation du public ciblent les lacunes dans les connaissances et les iniquités en matière de soins, notamment l'expérience unique que vivent les femmes et leur profil de risque de maladie cardiovasculaire (MCV) accru. Pour transformer la pratique clinique et les modèles de soins, il est crucial de reconnaître et de comprendre les conceptions relatives au sexe et au genre, les obstacles, les éléments facilitateurs ainsi que les facteurs qui influent sur l'accès aux soins, le traitement et le rétablissement après une manifestation cardiaque aiguë, du point de vue unique des patientes. Ce nouveau chapitre de l'atlas dresse un bilan des connaissances et cerne les lacunes quant à l'expérience des femmes qui vivent avec une MCV, du point de vue de survivantes. Les thèmes suivants y sont abordés : 1) vivre avec une MCV quand on est une femme; 2) « arrêtées à la porte ¼ : les obstacles à l'accès aux soins cardiovasculaires aigus; et 3) les mesures à prendre pour « ouvrir la porte ¼ aux femmes : souhaits et besoins des patientes. Dans la dernière section sont formulées des recommandations ciblées fondées sur des données publiées récemment et, ce qui est encore plus important, sur les commentaires de femmes qui vivent avec une MCV.

Multiple primary melanoma in the elderly.

BACKGROUND: Few data exist regarding surveillance for multiple primary melanoma (MPM) in elderly patients or whether the incidence and risk factors are the same as for younger patients. Thus, we studied the frequency and characteristics of MPM in the elderly melanoma patients. METHODS: From our prospective melanoma registry, we studied 222 consecutive patients aged 65 years or older at their initial melanoma diagnosis. Mean follow-up was 65 ± 3 months. RESULTS: Median age was 76 years. Twenty-two patients (10%) developed a second primary melanoma and 8 (4%) of 3 or more primaries. 82% of second primaries (18 of 22) were the same or thinner than the index melanoma, yet 50% of third primary melanomas (4 out of 8) were thicker. Only prior dysplastic nevi (P <. 0001) were a significant risk factor for MPM. CONCLUSIONS: These data suggest elderly melanoma patients have a significant risk of MPM that warrants careful surveillance to facilitate prompt detection and treatment. Patients with dysplastic nevi merit special scrutiny.

Current Concepts in the Use of PLLA: Clinical Synergy Noted with Combined Use of Microfocused Ultrasound and Poly-L-Lactic Acid on the Face, Neck, and Décolletage.

BACKGROUND: Aging of the face, neck, and décolletage is a multifactorial process involving epidermal photodamage and loss of soft tissue and bony volume. Multilevel rejuvenation of these areas can be obtained by enhancing volume restoration, neocollagenesis, and tissue contraction with combined efficacy of poly-L-lactic acid (PLLA) and microfocused ultrasound (MFU, Ultherapy) treatments. METHODS: The authors reviewed the use of PLLA and MFUs as collaborative modalities to improve the appearance of the face, neck, and décolletage. RESULTS: Experienced cosmetic dermatology centers deliver PLLA and MFU in a single session to target multiple tissue planes. CONCLUSIONS: Concurrent treatment with PLLA and MFUs can be performed efficiently and safely; however, additional research is needed to explore the synergistic effects of these treatments. Patients may also benefit from decreased overall downtime and necessary office visits.

Pregnancy and the risk of rheumatoid arthritis in a highly predisposed North American Native population.

OBJECTIVE: To examine reproductive history and rheumatoid arthritis (RA) risk in a highly predisposed population of North American Natives (NAN) with unique fertility characteristics. METHODS: The effect of pregnancy on the risk of RA was examined by comparing women enrolled in 2 studies: a study of RA in NAN patients and their unaffected relatives; and NAN patients with RA and unrelated healthy NAN controls enrolled in a study of autoimmunity. All participants completed questionnaires detailing their reproductive history. RESULTS: Patients with RA (n = 168) and controls (n = 400) were similar overall in age, education, shared epitope frequency, number of pregnancies, age at first pregnancy, smoking, and breastfeeding history. In multivariate analysis, for women who had ≥ 6 births the OR for developing RA was 0.43 (95% CI 0.21-0.87) compared with women who had 1-2 births (p = 0.046); for women who gave birth for the first time after age 20 the OR for developing RA was 0.33 (95% CI 0.16-0.66) compared with women whose first birth occurred at age ≤ 17 (p = 0.001). The highest risk of developing RA was in the first postpartum year (OR 3.8; 95% CI 1.45-9.93) compared with subsequent years (p = 0.004). CONCLUSION: In this unique population, greater parity significantly reduced the odds of RA; an early age at first birth increased the odds, and the postpartum period was confirmed as high risk for RA onset. The protective effect of repeated exposure to the ameliorating hormonal and immunological changes of pregnancy may counterbalance the effect of early exposure to the postpartum reversal of these changes.

Oral health in a First Nations and a non-Aboriginal population in Manitoba.

OBJECTIVES: To analyze the prevalence of poor oral health and selected determinants in First Nations (FN) and Caucasian samples in Manitoba, Canada. STUDY DESIGN: Cross-sectional survey, nested in a cohort study. METHODS: FN and Caucasian participants completed a questionnaire on socio-demographic variables, oral health symptoms, and oral health-related behaviours as part of a broader cohort study comparing these ethnic groups for different chronic immune mediated diseases. RESULTS: Caucasians reported higher levels of employment, education, and urban dwelling than FNs (p<0.001). FNs reported smoking more, and having poorer oral health-related behaviours than Caucasians (p<0.001). After adjustment for age and sex, FN reported having more oral health symptoms than Caucasians (odds ratio (OR): 2.71; 95% confidence interval (CI): 1.73, 4.52), but the association was reduced and not statistically significant after adjustment for other socio-demographic variables (OR=1.34; 95% CI: 0.58, 3.10). Oral health symptoms were associated with current smoking among FN (adjusted OR=2.67, 95% CI: 1.05, 6.78). Oral hygiene behaviours were significantly related to smoking status, rural living and education for both groups. CONCLUSIONS: Oral health-related behaviours and smoking were found to be significant factors explaining poor oral health, which were lower for the FNs cohort than the Caucasian sample. However oral health and related behaviours were less related to their ethnicity than to socio-demographic factors, suggesting that policies to change behaviour will not result in lasting reductions in oral health differences between these groups in Manitoba.

Familial clustering of the serum cytokine profile in the relatives of rheumatoid arthritis patients.

OBJECTIVE: Rheumatoid arthritis (RA) is prevalent in North American Native populations, with a high frequency of multicase families and seropositivity in first-degree relatives. This study was undertaken to determine whether the serum cytokine profile of first-degree relatives of North American Native patients with RA differed from that of individuals with no family history of autoimmunity and whether there was an association with RA autoantibodies. METHODS: North American Native patients with RA (n = 105), their first-degree relatives (n = 273), healthy North American Native controls (n = 200), and Caucasian controls (n = 150) were studied. Serum levels of 42 cytokines were tested using a multiplex laser bead assay. Rheumatoid factor (RF), anti-cyclic citrullinated peptide 2 (anti-CCP-2), monocyte chemotactic protein 1 (MCP-l), and high-sensitivity C-reactive protein (hsCRP) were tested by enzyme-linked immunosorbent assay, and HLA-DRB1 alleles by specific primers. Discriminant analysis and logistic regression classified individuals based on their cytokine profile. RESULTS: The prevalence of RF (cutoff level predetermined to include 5% of Caucasian controls) and anti-CCP (cutoff level of ≥40 units) was, respectively, 88% and 81% in the RA patients, 34% and 9% in first-degree relatives, and 9% and 4% in North American Native controls; the prevalence of anti-CCP was 0% in Caucasian controls. Levels of most cytokines were highest in RA patients; 17 of 40 cytokines (43%) were significantly higher in first-degree relatives than in controls, including multiple proinflammatory cytokines. Discriminant analysis showed a notable distinction between the groups, with 85% classification accuracy. First-degree relatives had markedly higher MCP-1 and hsCRP levels than North American Native controls, but there was no consistent association with RA autoantibodies. CONCLUSION: Our findings indicate that levels of multiple cytokines and hsCRP are higher in first-degree relatives of North American Native patients with RA compared to individuals from a nonautoimmune background. These data suggest that elevated baseline cytokine levels may be part of the risk profile for developing RA.

Immunogenetic risks of anti-cyclical citrullinated peptide antibodies in a North American Native population with rheumatoid arthritis and their first-degree relatives.

OBJECTIVE: To determine the prevalence of anti-cyclic citrullinated peptide (anti-CCP) antibodies in unaffected relatives of North American Native probands with rheumatoid arthritis (RA); and the associations of the shared epitope (SE) and HLA-DRB1*0901 with RA and anti-CCP antibodies. METHODS: The subjects were RA probands, affected relatives, unaffected first-degree (FDR) and more distant relatives, and unaffected controls from the same population. HLA-DRB1 typing was determined by DNA sequencing and anti-CCP antibodies were determined by ELISA. RESULTS: DRB1*0901, SE, and SE/DRB1*0901 genotypes were all associated with RA. SE/DRB1*0901, but not other SE genotypes, was associated with disease onset at age<16 years. The frequency of anti-CCP antibodies was 82% in RA probands, 17% in FDR, 11% in more distant relatives, and 3% in controls. Among unaffected relatives, a significant increased risk of anti-CCP was associated with SE/DRB1*0901 genotype, but not with SE. CONCLUSION: An independent association of the non-SE allele DRB1*0901 with RA was confirmed in this population, and this allele in combination with a SE allele was associated with younger age at disease onset. FDR of RA probands have a higher prevalence of anti-CCP antibodies than more distant relatives and unrelated controls, suggesting a gradient of risk for disease development. Immunogenetic risks may act early in disease pathogenesis at the level of initiation of RA autoantibody formation; however, it is not clear what additional genetic and environmental risks are involved in progression to clinical disease.