{"id":11759,"date":"2021-10-13t14:27:34","date_gmt":"2021-10-13t13:27:34","guid":{"rendered":"\/\/www.aselpijama.com\/?page_id=11759"},"modified":"2024-08-07t14:08:16","modified_gmt":"2024-08-07t13:08:16","slug":"pha-uk-led-research","status":"publish","type":"page","link":"\/\/www.aselpijama.com\/research\/pha-uk-led-research\/","title":{"rendered":"pha uk led research"},"content":{"rendered":"
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we are dedicated to improving life for people affected by pulmonary hypertension, and our own research is underpinned by this commitment. capturing the experiences and opinions of those in the ph community is vital to enable us to carry out campaigns and shape resources, and we are grateful to everyone who completes our surveys, or lends their voice in other ways to our research.<\/p>

please scroll down to find out more about our current and previous research. <\/p>

understanding attitudes towards the clinical frailty score <\/h2>\n\n

this research gathered patient and caregiver thoughts on this potential new way of measuring the impact of ph. (results published august 2024)<\/p>\n\n

find out more and see the results<\/a><\/p><\/div>

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lifting the lid on nutrition and ph<\/h2>\n\n

our first-of-its kind survey generated rich findings that are helping us to support people with ph to enjoy a better quality of life. (results published march 2024)<\/p>\n\n

find out more<\/a><\/p><\/div>

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breathless, not voiceless: what it means to live with ph today<\/h2>\n\n

the uk\u2019s largest ever study into the lived experiences of pulmonary hypertension. (results published november 2023)<\/p>\n\n

read the report<\/a><\/p><\/div>

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your data, your thoughts<\/h2>\n\n

this research project aimed to find out how the ph community feels about their health records being accessed by researchers for a variety of different purposes. <\/p>\n\n

<\/p>\n\n

find out more <\/a><\/p><\/div>

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the cost of living crisis and ph<\/h2>\n\n

this research has demonstrated a clear correlation between the cost-of-living crisis and declining health in the ph community. it\u2019s vital that there is change. <\/p>\n\n

find out more<\/a><\/p><\/div>

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‘my pandemic’ <\/h2>\n\n

this unique project has used personal stories to understand more about experiences of the covid-19 crisis within the ph community. <\/p>\n\n

find out more<\/a> <\/p><\/div>

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1000 voices: living through the pandemic with ph <\/h2>\n\n

in the summer of 2021, we asked for the experiences of patients – and their loved ones – to help us understand the full impact of the covid-19 pandemic on the uk’s ph community. <\/p>\n\n

over 1000 responses were received.<\/p>\n\n

access the findings here<\/a><\/p><\/div>

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shielded voices<\/h2>\n\n

this research was conducted in the summer of 2020 and aimed to capture the lived experiences of people with ph during the first three months of the covid-19 pandemic. <\/p>\n\n

access the findings here<\/a><\/p><\/div>

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the true emotional impact of ph <\/h2>\n\n

this study aimed to understand more about the issues revealed in our living with ph survey, uncovering the significant impact of pulmonary hypertension on emotional and mental wellbeing. <\/p>\n\n

access the findings here<\/a><\/p><\/div>

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the true financial impact of ph<\/h2>\n\n

inspired by the results of our major living with ph survey, this research delved deeper into the financial impact of pulmonary hypertension. <\/p>\n\n

the study looked at changes in income and employment, the benefits system, insurance, and the hidden costs of ph. <\/p>\n\n

access the findings here<\/a><\/p><\/div>

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what it means to live with ph today <\/h2>\n\n

this major survey, conducted in 2016, is the largest study into the lived experience of pulmonary hypertension. <\/p>\n\n

the research looked at areas including time to diagnosis, quality of life, financial impact and treatment, and the results have underpinned the strategic direction of the pha uk ever since. <\/p>\n\n

access the findings here <\/a><\/p><\/div>

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palliative care and pah<\/h2>\n\n

we funded an important phd study that researched the role of palliative care in pulmonary arterial hypertension, addressing barriers and ways to overcome them. the report will be available soon, and we are currently building on these findings to help more people access this vital support.<\/p><\/div>

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specialist rehabilitation in ph<\/h2>\n\n

we have provided funding for specialist physiotherapy roles within two specialist ph treatment centres. these roles combined research into rehabilitation with the day-to-day support of patients, and the findings are helping us secure equity of access across the uk.<\/p><\/div>

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we are dedicated to improving life for people affected by pulmonary hypertension, and our own research is underpinned by this commitment. capturing the experiences and opinions of those in the ph community is vital to enable us to carry out campaigns and shape resources, and we are grateful to everyone who completes our surveys, or […]<\/p>\n","protected":false},"author":6,"featured_media":0,"parent":11754,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"class_list":["post-11759","page","type-page","status-publish","hentry"],"acf":[],"_links":{"self":[{"href":"\/\/www.aselpijama.com\/wp-json\/wp\/v2\/pages\/11759"}],"collection":[{"href":"\/\/www.aselpijama.com\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"\/\/www.aselpijama.com\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"\/\/www.aselpijama.com\/wp-json\/wp\/v2\/users\/6"}],"replies":[{"embeddable":true,"href":"\/\/www.aselpijama.com\/wp-json\/wp\/v2\/comments?post=11759"}],"version-history":[{"count":48,"href":"\/\/www.aselpijama.com\/wp-json\/wp\/v2\/pages\/11759\/revisions"}],"predecessor-version":[{"id":90032,"href":"\/\/www.aselpijama.com\/wp-json\/wp\/v2\/pages\/11759\/revisions\/90032"}],"up":[{"embeddable":true,"href":"\/\/www.aselpijama.com\/wp-json\/wp\/v2\/pages\/11754"}],"wp:attachment":[{"href":"\/\/www.aselpijama.com\/wp-json\/wp\/v2\/media?parent=11759"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}