Pub Date : 2022-04-01DOI: 10.21693/1933-088x-21.2.44
R. Bernardo, V. A. de Jesus Perez
Pulmonary arterial hypertension (PAH) is a chronic, progressive, and debilitating disease associated with increased cardiopulmonary morbidity and mortality. Current knowledge is derived from registries and landmark clinical trials, although concern exists that minorities are underrepresented in these datasets, and it remains unknown if there are intrinsic differences in minorities and disadvantaged groups. The Pulmonary Hypertension Association Registry offers a unique opportunity for the understanding of the unique social background of minorities in the United States because it routinely collects information related to socioeconomic factors such as annual income and health care insurance. Furthermore, representation of Hispanic patients may be slightly higher than in other US-based registries. In this review, we discuss the interplay between biologic, socioeconomic, and racial or ethnic factors in PAH, with special emphasis on the Hispanic population. We describe the unique socioeconomic profile of Hispanic individuals and propose next steps to improve representation and fight inequality for Hispanic patients with PAH.
{"title":"Hispanic Ethnicity and Social Determinants of Health: Harnessing Data from The Pulmonary Hypertension Association Registry","authors":"R. Bernardo, V. A. de Jesus Perez","doi":"10.21693/1933-088x-21.2.44","DOIUrl":"https://doi.org/10.21693/1933-088x-21.2.44","url":null,"abstract":"Pulmonary arterial hypertension (PAH) is a chronic, progressive, and debilitating disease associated with increased cardiopulmonary morbidity and mortality. Current knowledge is derived from registries and landmark clinical trials, although concern exists that minorities are underrepresented in these datasets, and it remains unknown if there are intrinsic differences in minorities and disadvantaged groups. The Pulmonary Hypertension Association Registry offers a unique opportunity for the understanding of the unique social background of minorities in the United States because it routinely collects information related to socioeconomic factors such as annual income and health care insurance. Furthermore, representation of Hispanic patients may be slightly higher than in other US-based registries.\u0000 In this review, we discuss the interplay between biologic, socioeconomic, and racial or ethnic factors in PAH, with special emphasis on the Hispanic population. We describe the unique socioeconomic profile of Hispanic individuals and propose next steps to improve representation and fight inequality for Hispanic patients with PAH.","PeriodicalId":92747,"journal":{"name":"Advances in pulmonary hypertension","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46998221","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-01-01DOI: 10.21693/1933-088x-21.1.7
Laura S. Rhee, Alisha A. Morgan, H. DuBrock
Pulmonary arterial hypertension (PAH) is a chronic and progressive disease associated with impaired health-related quality of life and survival. Palliative care (PC) is patient- and family-centered care provided by an interdisciplinary team with an overarching goal of alleviating suffering and improving quality of life for patients with advanced illness. PC in other chronic diseases is associated with improved quality of life, symptom management, illness understanding, and reduced caregiver burden, but there is limited data regarding PC in PAH. Despite limited evidence, there is strong rationale for involving PC specialists in the longitudinal management of PAH. There are currently no guidelines to help clinicians determine the most appropriate timing for referral of PAH patients to PC specialty teams. Consequently, referrals are limited and often delayed. Adoption of a standardized approach to PC referrals based on clinical or patient triggers could facilitate earlier involvement of PC as an adjunct to ongoing PAH disease-directed care. Incorporation of PC in the longitudinal management of PAH may be beneficial to address the multidimensional aspects of living with a chronic and life-limiting illness.
{"title":"Palliative Care and Pulmonary Arterial Hypertension","authors":"Laura S. Rhee, Alisha A. Morgan, H. DuBrock","doi":"10.21693/1933-088x-21.1.7","DOIUrl":"https://doi.org/10.21693/1933-088x-21.1.7","url":null,"abstract":"\u0000 \u0000 Pulmonary arterial hypertension (PAH) is a chronic and progressive disease associated with impaired health-related quality of life and survival. Palliative care (PC) is patient- and family-centered care provided by an interdisciplinary team with an overarching goal of alleviating suffering and improving quality of life for patients with advanced illness. PC in other chronic diseases is associated with improved quality of life, symptom management, illness understanding, and reduced caregiver burden, but there is limited data regarding PC in PAH. Despite limited evidence, there is strong rationale for involving PC specialists in the longitudinal management of PAH.\u0000 \u0000 \u0000 \u0000 There are currently no guidelines to help clinicians determine the most appropriate timing for referral of PAH patients to PC specialty teams. Consequently, referrals are limited and often delayed. Adoption of a standardized approach to PC referrals based on clinical or patient triggers could facilitate earlier involvement of PC as an adjunct to ongoing PAH disease-directed care.\u0000 \u0000 \u0000 \u0000 Incorporation of PC in the longitudinal management of PAH may be beneficial to address the multidimensional aspects of living with a chronic and life-limiting illness.\u0000","PeriodicalId":92747,"journal":{"name":"Advances in pulmonary hypertension","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47277632","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-01-01DOI: 10.21693/1933-088x-21.1.16
E. Whalen, M. Hellsten, G. Santucci, D. Czyzewski, Nidhy P. Varghesea
Engagement in social media has risen nearly 60% over the last decade with consumers engaging in social media not only browse social networking websites, but also to share health information, view health-related videos, and contribute to online support groups. For parents and caregivers (PCGs) of children diagnosed with pulmonary hypertension, participation in social media can be one way to associate with others in a similar position as individuals can connect with others around the world and share information. In this study, parental and caregiver involvement was explored through a cross-sectional study utilizing a survey method to evaluate current practices in social media groups. PCGs of over 300 patients from a large pediatric pulmonary hypertension center were approached for participation in the survey via their child’s web-based messaging portal connected to the electronic medical record. The survey was created in REDCap and given to parents electronically or on paper. The survey was comprised of 4 sections covering child demographics, PH medications and hospitalization encounters, social media utilization among PCGs, and the “Big 5 Personality Survey.” Eighteen PCGs completed sections 1–3 of the survey, and 6 PCGs completed the entirety of the survey (sections 1–4). The children represented in the survey had been diagnosed for an average of 5.5 years. Seventy percent of PCGs in the survey reported using social media as a support resource, utilizing 2–5 different social media platforms. PCGs reported feeling overwhelmed, connected, discouraged, depressed, supported, seen, and good when participating. Among respondents, the three highest-scoring personality traits were agreeableness (31.9), conscientiousness (27.2), and openness to experiences (26.7). This is the first study that seeks to understand social media’s role as a support resource and its impact on PCGs of children diagnosed with pulmonary hypertension. It offers insight as to why PCGs may utilize social media platforms and emphasizes its significant role as a support resource for these families. Healthcare teams should consider evaluation of social media and support its role as a resource and source of education.
{"title":"Social Media Participation Among Parents and Caregivers of Children With Pulmonary Hypertension","authors":"E. Whalen, M. Hellsten, G. Santucci, D. Czyzewski, Nidhy P. Varghesea","doi":"10.21693/1933-088x-21.1.16","DOIUrl":"https://doi.org/10.21693/1933-088x-21.1.16","url":null,"abstract":"\u0000 \u0000 Engagement in social media has risen nearly 60% over the last decade with consumers engaging in social media not only browse social networking websites, but also to share health information, view health-related videos, and contribute to online support groups. For parents and caregivers (PCGs) of children diagnosed with pulmonary hypertension, participation in social media can be one way to associate with others in a similar position as individuals can connect with others around the world and share information.\u0000 \u0000 \u0000 \u0000 In this study, parental and caregiver involvement was explored through a cross-sectional study utilizing a survey method to evaluate current practices in social media groups. PCGs of over 300 patients from a large pediatric pulmonary hypertension center were approached for participation in the survey via their child’s web-based messaging portal connected to the electronic medical record. The survey was created in REDCap and given to parents electronically or on paper. The survey was comprised of 4 sections covering child demographics, PH medications and hospitalization encounters, social media utilization among PCGs, and the “Big 5 Personality Survey.”\u0000 \u0000 \u0000 \u0000 Eighteen PCGs completed sections 1–3 of the survey, and 6 PCGs completed the entirety of the survey (sections 1–4). The children represented in the survey had been diagnosed for an average of 5.5 years. Seventy percent of PCGs in the survey reported using social media as a support resource, utilizing 2–5 different social media platforms. PCGs reported feeling overwhelmed, connected, discouraged, depressed, supported, seen, and good when participating. Among respondents, the three highest-scoring personality traits were agreeableness (31.9), conscientiousness (27.2), and openness to experiences (26.7).\u0000 \u0000 \u0000 \u0000 This is the first study that seeks to understand social media’s role as a support resource and its impact on PCGs of children diagnosed with pulmonary hypertension. It offers insight as to why PCGs may utilize social media platforms and emphasizes its significant role as a support resource for these families. Healthcare teams should consider evaluation of social media and support its role as a resource and source of education.\u0000","PeriodicalId":92747,"journal":{"name":"Advances in pulmonary hypertension","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45626077","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-01-01DOI: 10.21693/1933-088x-21.1.12
Claire Parker, E. Whalen, J. McSweeney, Anna M. Brown, J. Raj, M. Mullen
The already high rates of anxiety and depression among healthy children have increased further since the COVID-19 pandemic began in early 2020. Prepandemic data suggest children with chronic disease were already experiencing increased rates of anxiety and depression as compared to their healthy peers. There is currently a paucity of literature on the prevalence of anxiety and depression in patients with pediatric pulmonary hypertension. In addition, there are no practice recommendations regarding mental health screening in this population. We evaluated provider perception of mental health screening at 14 pediatric pulmonary hypertension care centers across the United States and Canada using a cross-sectional survey. Thirty-seven providers from 14 pediatric pulmonary hypertension centers in North America completed the survey. Health care providers caring for pediatric pulmonary hypertension patients perceive their patient cohort to frequently experience anxiety and depression. In addition, these providers believe that their patients would benefit from formalized, and routine, assessment of anxiety and depression with referral to mental health services as appropriate. This highlights the need to better understand the prevalence of anxiety and depression in pediatric pulmonary hypertension patients and to establish formal mental health screening practices within pediatric pulmonary hypertension care centers.
{"title":"Perspectives on Mental Health Evaluation in Pediatric Pulmonary Hypertension: A Call to Action","authors":"Claire Parker, E. Whalen, J. McSweeney, Anna M. Brown, J. Raj, M. Mullen","doi":"10.21693/1933-088x-21.1.12","DOIUrl":"https://doi.org/10.21693/1933-088x-21.1.12","url":null,"abstract":"\u0000 \u0000 The already high rates of anxiety and depression among healthy children have increased further since the COVID-19 pandemic began in early 2020. Prepandemic data suggest children with chronic disease were already experiencing increased rates of anxiety and depression as compared to their healthy peers. There is currently a paucity of literature on the prevalence of anxiety and depression in patients with pediatric pulmonary hypertension. In addition, there are no practice recommendations regarding mental health screening in this population.\u0000 \u0000 \u0000 \u0000 We evaluated provider perception of mental health screening at 14 pediatric pulmonary hypertension care centers across the United States and Canada using a cross-sectional survey. Thirty-seven providers from 14 pediatric pulmonary hypertension centers in North America completed the survey.\u0000 \u0000 \u0000 \u0000 Health care providers caring for pediatric pulmonary hypertension patients perceive their patient cohort to frequently experience anxiety and depression. In addition, these providers believe that their patients would benefit from formalized, and routine, assessment of anxiety and depression with referral to mental health services as appropriate. This highlights the need to better understand the prevalence of anxiety and depression in pediatric pulmonary hypertension patients and to establish formal mental health screening practices within pediatric pulmonary hypertension care centers.\u0000","PeriodicalId":92747,"journal":{"name":"Advances in pulmonary hypertension","volume":"1 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41721250","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-01-01DOI: 10.21693/1933-088x-21.1.5
Allison Dsouza
{"title":"PH Professional Network: From Patient to Provider: How My Diagnosis Makes Me a Better Nurse","authors":"Allison Dsouza","doi":"10.21693/1933-088x-21.1.5","DOIUrl":"https://doi.org/10.21693/1933-088x-21.1.5","url":null,"abstract":"","PeriodicalId":92747,"journal":{"name":"Advances in pulmonary hypertension","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48130396","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-12-01DOI: 10.21693/1933-088x-20.5.142
C. Welch, W. Chung
Pulmonary hypertension (PH), defined by mean pulmonary artery pressure >20 mmHg, is a common physiologic manifestation of many diseases. Pulmonary arterial hypertension (PAH) represents a smaller subgroup of patients who have PH, and PAH causes significant cardiorespiratory morbidity and premature mortality. PH can manifest across the lifespan, with similar incidence for both pediatric- and adult-onset disease. However, pediatric-onset disease is particularly challenging because it is frequently associated with a more severe clinical course and comorbidities including lung and heart developmental anomalies. For PH Group 1/pulmonary arterial hypertension, causal genetic variants can be identified in ~13% of adults and ~43% of children. Education about the option for genetic testing is strongly recommended for all pediatric and adult HPAH/IPAH patients. Both gene panel and exome/genome sequencing tests can be useful in diagnosis, but exome/genome sequencing provides a comprehensive dataset for reanalysis over time for cases without an initial diagnosis. Knowledge of genetic diagnoses can immediately impact clinical management of PH, including multimodal medical treatment, surgical intervention, transplantation decisions, and screening for associated conditions. There is a need for large, diverse, international consortia with ever-improving analytical pipelines to confirm previously implicated genes, identify additional genes/variants, assess penetrance, and clinically characterize each genetic subtype for natural history, prognosis and response to therapies to inform more precise clinical management.
{"title":"Genomics of Pulmonary Hypertension","authors":"C. Welch, W. Chung","doi":"10.21693/1933-088x-20.5.142","DOIUrl":"https://doi.org/10.21693/1933-088x-20.5.142","url":null,"abstract":"\u0000 \u0000 Pulmonary hypertension (PH), defined by mean pulmonary artery pressure >20 mmHg, is a common physiologic manifestation of many diseases. Pulmonary arterial hypertension (PAH) represents a smaller subgroup of patients who have PH, and PAH causes significant cardiorespiratory morbidity and premature mortality. PH can manifest across the lifespan, with similar incidence for both pediatric- and adult-onset disease. However, pediatric-onset disease is particularly challenging because it is frequently associated with a more severe clinical course and comorbidities including lung and heart developmental anomalies. For PH Group 1/pulmonary arterial hypertension, causal genetic variants can be identified in ~13% of adults and ~43% of children.\u0000 \u0000 \u0000 \u0000 Education about the option for genetic testing is strongly recommended for all pediatric and adult HPAH/IPAH patients. Both gene panel and exome/genome sequencing tests can be useful in diagnosis, but exome/genome sequencing provides a comprehensive dataset for reanalysis over time for cases without an initial diagnosis. Knowledge of genetic diagnoses can immediately impact clinical management of PH, including multimodal medical treatment, surgical intervention, transplantation decisions, and screening for associated conditions.\u0000 \u0000 \u0000 \u0000 There is a need for large, diverse, international consortia with ever-improving analytical pipelines to confirm previously implicated genes, identify additional genes/variants, assess penetrance, and clinically characterize each genetic subtype for natural history, prognosis and response to therapies to inform more precise clinical management.\u0000","PeriodicalId":92747,"journal":{"name":"Advances in pulmonary hypertension","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2021-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49056788","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-12-01DOI: 10.21693/1933-088x-20.5.168
Greg Elliott, U. Krishnan, Wendy K. Chung, Paul Yu, E. Austin
{"title":"PH Roundtable: Genetics and Pulmonary Hypertension","authors":"Greg Elliott, U. Krishnan, Wendy K. Chung, Paul Yu, E. Austin","doi":"10.21693/1933-088x-20.5.168","DOIUrl":"https://doi.org/10.21693/1933-088x-20.5.168","url":null,"abstract":"","PeriodicalId":92747,"journal":{"name":"Advances in pulmonary hypertension","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2021-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47057903","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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