International Patient and Carer Survey on the the impact of PH – 2011

Background

The International PAH Patient and Carer Survey (IPCS) was conducted to provide new insights into the wider impact of pulmonary arterial hypertension (PAH) on patients and carers, beyond the clinical definition of the physical burden of the disease. Between 2010 and 2011, a total of 326 PAH patients and 129 carers across five European countries (France, Germany, Italy, Spain and the UK), replied to questionnaires asking about four main areas: the physical and practical impact of PAH, the emotional impact, the social impact, and information needs and provision.

An international Steering Committee, consisting of PAH specialists, nurses and representatives from patient organizations, was formed specifically to ensure the survey would be relevant at both a medical and practical level. The Steering Committee was also consulted on the analysis of the survey results, to gain a thorough understanding of the personal perspectives of PAH patients, as well as their carers, and to help shape and endorse information resources to meet the gaps identified by the survey. This was the first survey to explore the perspective of the carer as well as the patient on the physical, social, emotional and practical impact of the condition on their lives. It also looked at the information needs of PAH patients and carers and how these might change as the disease progresses.

Download full report here: PAH_Survey_FINAL.pdf

MAIN IPCS FINDINGS

Top-line survey results revealed:

  • the ability to work and the impact on household income is of particular concern to patients and their carers.
  • the world narrows for PAH patients and carers as they are increasingly confined to their home with less ability to travel and socialize.
  • PAH affects a patient’s ability to be intimate with their partner mainly because of low self-esteem and being unable or afraid to exert themselves physically.
  • PAH patient and carers experienced feelings of isolation, mainly as a result of little understanding of the disease among family and friends.
  • PAH patients and carers found there were gaps in information about the emotional and financial aspects of living with PAH.

The survey findings underline the need to recognize carers as individuals alongside the patients and provides a compelling argument for both to receive a more comprehensive standard of care, including psycho-social support. Optimum PAH management would ideally require a multidisciplinary approach including physicians, nurses, social workers and psychologists.

Patient and Carer “dialogue tools”

The “dialogue tools” developed as a follow up to the IPCS, provide a summary of the results from the survey and contain a questionnaire, intended to help patients and carers to document their thoughts, feelings and concerns in a structured way, which can help focus discussions with doctors, family, friends and others, and get the emotional support and best care possible needed to cope with their or their cared one’s illness.

The dialogue tools are now available in 16 languages.

IPCS Scientific Poster at WSPH

The World Symposia on Pulmonary Hypertension (WSPH) started in Geneva in 1973 and has been held every five years after the Evian edition in 1998. These symposia mark the main progresses in pulmonary hypertension science and pave the way for further advancements. The 2013 symposium was attended by over 1.000 medical professionals from all over the world. We were delighted that the Scientific Committee of the WSPH accepted our abstract on the findings of the survey and we were proud to present the scientific poster on “The impact of PAH on the lives of patients and carers” at a dedicated poster session. On 28 February, 2013, PHA Europe distributed a media release to healthcare journalists to coincide with the presentation. News coverage was secured in key online publications across Europe, resulting in widespread awareness of the challenges faced by PH patients and carers, generating over 80 pieces of online coverage and reaching a potential audience of about 2 million people on the day of release.

PHA-Europe-May-2013.pdf

IPCS Scientific poster at European Respiratory Society congress

More than 20.000 delegates attended the 2013 Annual Congress of the European Respiratory Society, which is Europe’s largest annual scientific gathering in the field of respiratory medicine. We are very honored that the ERS accepted the scientific poster we had previously presented at the WSPH, summarizing the key findings of the survey, in the form of a poster session dedicated to PH. The ERS Congress provided a wonderful opportunity to further promote the results from the survey.

PHA_Europe_October_2013.pdf

Article in the European Respiratory Review

Shortly after the summer of 2013, the IPCS survey Steering Committee submitted the survey results as a paper to the European Respiratory Review. The paper, entitled “Understanding the impact of pulmonary arterial hypertension on patients’ and carers’ lives” was accepted by the Editorial Board and has now been published.

To view the full article please visit:
http://err.ersjournals.com/content/current
http://err.ersjournals.com/content/22/130/535.full.pdf+html

Authors are: Loic Guillevin, Iain Armstrong, Rino Aldrighetti, Luke S. Howard, Henrik Ryftenius, Aryeh Fischer, Sandra Lombardi, Sean Studer and Pisana Ferrari, all members of the IPCS Steering Committee.

Scientific poster at European Conference on Rare Diseases and orphan products

The scientific poster on “The impact of PAH on the lives of patients and carers” was also presented at a dedicated poster session at the European Conference on Rare Diseases and Orphan Products (ECRD), which was held May 8-10, 2014, in Berlin. The ECRD provides a unique platform for all rare diseases, across all European nations. With its high participation rate and excellent speakers, the congress covers the latest research, developments in new treatments and information regarding innovations in health care, social care and support at both the European and national levels.

newsletter-may-2014.pdf

Article for the European Respiratory Review

Building on the survey results and examining the differences between physicians’ and patients’ expectations of their care, Dr Luke Howard, Dr Sanjay Mehta and Pisana Ferrari published a second important paper in the European Respiratory Review in December 2014. The paper calls for care to be tailored to the individual needs of each patient, including social and emotional support, as far as possible.

http://err.ersjournals.com/content/23/134/458.full.pdf+html

Future developments

Findings from the International Patient and Carer Survey, the US Patient and Carer Survey and the IMPACT Study undertaken by PHA UK, uncovered a need for patients and carers to have support and resources to help them build their confidence in engaging in dialogue with their clinicians, in order to truly empower them to manage their care. PHA Europe is currently discussing together with PHA UK and PHA US a possibility to develop a program that would address those needs. We will certainly keep you updated around the programs progress in coming issues.

“TIME TO TALK”

PHA Europe has developed a special section of its website to host the IPCS findings, the Dialogue Tools, recently developed resources for patient associations and best practice case studies, see: “Time to Talk”.

Last updated: August 25, 2015