Top Tweets for #phgps
❓ Did you know?
#PHGPS found that only 34% of adults with PAH, who were eligible under current guidelines, have had genetic testing.
Genetic insights can help clinicians understand inherited risk, guide family discussions, and support more personalised care. These findings highlight a clear opportunity to improve access and ensure more people benefit from the information genetic testing can provide.
➡️ Read the full #PHGPS paper to explore the key findings: https://t.co/XTvpbS4g8Y
🌍Did you know?
...in 2023/4 over 3000 patients or their loved ones responded to the Pulmonary Hypertension Global Patient Survey, providing a unique insight to their lived experience with the disease. Read the full #PHGPS paper to explore the key findings 👉
https://t.co/XTvpbS4g8Y
📢 Good news! 📢Our #PHGPS, the largest global survey exploring the perspectives of #PulmonaryHypertension patients, has identified 10 key global priorities for improving #PulmonaryHypertension care in adult patients. These 10 calls to action aim to enhance equitable access to care and research opportunities, particularly across areas of geographical disparities:
1. Patients should be investigated rapidly to reduce the time to PH diagnosis
2. Patients should have access to a specialist PH centre with diagnostics and therapeutics including genetic testing, parenteral prostacyclins and mechanical interventions for management of CTEPH
3. Patient Reported Outcomes Measures (PROMs) should be used to evaluate quality of life and guide holistic care, including psychological and rehabilitative services
4. Patients should be empowered to engage in shared-decision making in partnership with their clinicians, including managing side effects
5. Patients with PH should be encouraged to access PH associations by their healthcare professionals for education and other resources
6. Patients with PH should be assisted in applying to make adjustments to employment or applying for disability support
7. Patients with PH should be empowered to engage with digital and remote healthcare, where appropriate
8. Patients with Groups 2, 3 and 5 PH should be better represented in research and specialist clinical care
9. Patients with PH should be offered the opportunity to participate in clinical research trials and registries, that have ideally been co-designed with patients
10. Patients and their carers should be invited to participate in PHGPS-2 to evaluate progress over time and further widen representation geographically and in Groups 2 and 3
Read more 👉 https://t.co/jBRXAjIeFd
Congratualtions Joseph Newman, Hakim Ghani, Shiv Munagala, Eva Otter, Gerald Fischer, Marcin Kurzyna, Gergely Meszaros, Millicent Stone, Lynsay MacDonald, Shahin Moledina, Luke Howard, Wendy Gin-Sing, Pisana Ferrari, Maurice Beghetti, Katherine Bunclark, Mark Toshner, Matt Granato, The PHGPS Consortium, and Joanna Pepke-Zaba!
Pierwsza publikacja z Globalnego Rejestru Nadciśnienia Płucnego #PHGPS - nadciśnienie płucne oczami pacjentów, w tym dużej grupy pacjentów z 🇵🇱
Great news! Key findings just published in the ERJ Open Research from our Pulmonary Hypertension Global Patient Survey #PHGPS adult cohort of 3,329 patients highlight the achievements, shortcomings & regional disparities of #PH clinical care & research globally.
Findings in the 'The Pulmonary Hypertension Global Patient Survey: understanding the experiences and perspectives of patients' early view paper include:
🏥 most patients with pulmonary arterial hypertension (#PAH) reported a diagnosis within 12 months of symptom onset
💉 33.9% of eligible patients reported genetic testing
📋 20.6% of patients with #PulmonaryHypertension completed Patient Reported Outcome Measures (PROMs), with 7% feeling they changed management
💊 19.1% of patients participated in research; however, 72.2% who have not participated would be willing if invited.
Read the full paper -> https://t.co/XTvpbS4g8Y
A huge congratulations to Joe Newman, Hakim Ghani, Shiv Munagala, Eva Otter, Gerald Fischer, Marcin Kurzyna, MD, PhD, FESC, Gergely Meszaros JD, MSc, Millicent Stone, Lynsay MacDonald, Shahin Moledina, Luke Howard, Wendy Gin-Sing, Pisana Ferrari, Maurice Beghetti, Katherine Bunclark, Mark Toshner, Matt J. Granato, The PHGPS consortium, and Joanna Pepke-Zaba on your findings!
#PVRI #PatientCare
Great news! Key findings just published in the ERJ Open Research from our Pulmonary Hypertension Global Patient Survey #PHGPS adult cohort of 3,329 patients highlight the achievements, shortcomings & regional disparities of #PH clinical care & research globally.
Findings in the 'The Pulmonary Hypertension Global Patient Survey: understanding the experiences and perspectives of patients' early view paper include:
🏥 most patients with pulmonary arterial hypertension (#PAH) reported a diagnosis within 12 months of symptom onset
💉 33.9% of eligible patients reported genetic testing
📋 20.6% of patients with #PulmonaryHypertension completed Patient Reported Outcome Measures (PROMs), with 7% feeling they changed management
💊 19.1% of patients participated in research; however, 72.2% who have not participated would be willing if invited.
Read the full paper -> https://t.co/XTvpbS4g8Y
A huge congratulations to Joe Newman, Hakim Ghani, Shiv Munagala, Eva Otter, Gerald Fischer, Marcin Kurzyna, MD, PhD, FESC, Gergely Meszaros JD, MSc, Millicent Stone, Lynsay MacDonald, Shahin Moledina, Luke Howard, Wendy Gin-Sing, Pisana Ferrari, Maurice Beghetti, Katherine Bunclark, Mark Toshner, Matt J. Granato, The PHGPS consortium, and Joanna Pepke-Zaba on your findings!
#PVRI #PatientCare
📢 Exciting news! 🚀 The Pulmonary Hypertension Global Patient Survey (#PHGPS) is evolving! To allow the Patient Engagement & Empowerment Workstream to focus on new initiatives, PHGPS is becoming a stand-alone #PVRI Task Force. This ensures the Workstream can tackle other unmet patient needs and the new PHGPS Task Force can focus on advancing their work plan.
This transition also brings leadership changes:
💜 After 7 years of dedicated service, Joanna Pepke-Zaba is stepping down as Co-chair of the Workstream—huge thanks for her incredible contributions!
💜 Matt Granato steps down as Co-chair of the Workstream to take on the new role of Chair of the PHGPS Task Force
💜 Wendy Gin-Sing & Hall Skaara are welcomed as our new Co-chairs of the Patient Engagement & Empowerment Workstream, bringing invaluable experience and advocacy
Read more ➡️https://t.co/ldoB3Ugvjf
#PH #PulmonaryHypertension #PatientEngagement
Interested in improving #pulmonaryhypertension patient care? 📊
Data from our #PHGPS global patient survey is being analysed. This new data will expand our knowledge and understanding of PH symptoms, treatments, and patients’ quality of life worldwide. The findings have the potential to improve patient care, guide future research and help us address unmet needs.
If you're interested, we would love to hear from you. Find out more: https://t.co/3G5Ew2ZWfz
We are delighted to announce that the #PHGPS is now available in 7 additional languages: Bulgarian, Greek, Hebrew, Hungarian, Japanese, Latvian, and Romanian. Please continue to share the survey with your network in these regions: https://t.co/WvssRbM7Wj
Thank you for your support in sharing the Pulmonary Hypertension Global Patient Survey #PHGPS! As we approach the end of phase one, with 3,400+ responses, we kindly ask for your help in sharing the survey one last time, no matter where you are: https://t.co/WvssRbM7Wj
There are three days left to complete @PVRI #PHGPS. The survey aims to help clinicians understand the impact of #PH on patients worldwide and is for all people with #pulmonaryhypertension and their caregivers. This survey closes on Monday, Nov. 27. https://t.co/LS9c9H8pjK
Take @PVRI #PHGPS to help clinicians understand the impact of #PH on patients worldwide. Available in 17 languages, the survey is for all people with #pulmonaryhypertension and their caregivers. This survey closes on Nov. 27. https://t.co/XEkDO4AJLS
We've hit another milestone on the Pulmonary Hypertension Global Patient Survey - over 2,000 responses across 68 countries! Thank you for your ongoing support in sharing the message. Find out how you can help here: https://t.co/WvssRbM7Wj #PHGPS #PulmonaryHypertension
Take @PVRI #PHGPS to help clinicians understand the impact of #PH on patients worldwide. Available in 17 languages, the survey is for all people with #pulmonaryhypertension and their caregivers. This survey closes on Nov. 27. https://t.co/lMuTTrHack
#PulmonaryHypertension Patient Global Survey #PHGPS update:
Over 1300 responses from 48 countries in the first week - a great start!
We're hoping to hear from patients and their loved ones from as many countries as possible.
17 languages available:
https://t.co/4h7pfJzpRg 👍
🔴 Se está llevando a cabo una Encuesta Mundial de Pacientes (#PHGPS) con #HipertensiónPulmonar para ayudar a los médicos a comprender mejor el impacto de esta enfermedad a la vida de los pacientes y cómo se puede mejorar la atención.
¿Nos ayudas?
https://t.co/Wh0v8oonC4
Drumroll, please! We have received over 1,000 responses across 43 countries to our Pulmonary Hypertension Global Patient Survey #PHGPS in just 5 days! Thank you to everyone who has spread the word. Find out how you can help here: https://t.co/WvssRbM7Wj
🟪Just a quick reminder that the first global #pulmonaryhypertension (PH) patient survey is now fully available in all 17 languages as of yesterday. #phgps @PVRI
🔗Patients and caregivers can complete the survey now at https://t.co/V7ocu0ZtNJ
Dziś wystrartowała Globalna Ankieta Pacjenta Pacjenta z Nadciśnieniem Płucnym dostepna w 17 wersjach językowych, w tym polskiej. Zapraszam do wypełniania ankiety pacjentów z NP oraz ich opiekunów https://t.co/K2hfNhCnaq
#PHGPS
Today, @PVRI released the #PHGPS survey to help clinicians understand the impact of #pulmonaryhypertension on patients worldwide. The survey is available in 17 languages and open to all people with #PH. Complete the survey by Nov. 27. https://t.co/Xv5PLfUcGX
Ya está abierta la encuesta Mundial sobre #HipertensiónPulmonar.
El objetivo es evaluar los efectos y las experiencias de la vida real de los pacientes que viven con hipertensión pulmonar en todo el mundo.
¿Te animas?
Pulsa sobre este enlace:👇
https://t.co/WIaglrCJWG
#phgps
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