Report on Life as Young Adult with PAH, Created by Young Patients, Looks at Needs and Ways to Help

Report on Life as Young Adult with PAH, Created by Young Patients, Looks at Needs and Ways to Help

A report about life with pulmonary arterial hypertension (PAH) as a young person, created by young patients worldwide, addresses issues both pertinent and challenging to this age group — 18 to 30 — whose particular needs beyond the physical can often be overlooked.

These issues range from choosing a career that meets their long-term needs, establishing independence or dating, to the highly personal, like becoming sexually active and marriage, knowing that pregnancy is a life-threatening condition for young women with PAH.

It also looks at how multidisciplinary care teams and patient groups can better engage and support these PAH patients.

“Young adults are the people who will have to live with this disease for the longest time, so it is essential that doctors, nurses, social workers, families, peers and patient groups, acknowledge the particular challenges they face and support them to approach all aspects of PAH management and its wider impact with a positive mind-set and the information they need to live rich, full lives,” said Danijela Pesic, founder and president of Pulmonary Hypertension Association (PHA) Serbia, and one of the young adults involved in the report’s development.

Pesic was diagnosed with PH in infancy, and now works to raise PH awareness across Serbia and Europe.

“I was delighted to have been part of the conversations with other inspirational young adults that informed the development of this report,” Pesic said, and hoped “these insights may help healthcare professionals and patient groups alike, better meet the needs of this special group of people living with PAH.”

The report was based on information collected in a series of 1:1 interviews undertaken in 2016 with young patients across Europe and North America, an effort initiated and funded by Actelion Pharmaceuticals. Patients’ concerns and suggestions were then studied and compiled by steering committee of young adults with PAH, meeting online and spanning five countries, in November 2016.

Released this November, “Supporting  young adults living with pulmonary arterial hypertension (PAH) in the best practice management of their disease,” addresses a variety of topics but focuses on four central recommendations:

  1. Information and education. Improve both and focus on practical aspects, so that young patients can be more active in their own care.
  2. Psychological needs and care teams.  Multidisciplinary teams need be more aware of  the psychological needs of patients as young adults, and care should include emotional support through a psychologist or a patient group.
  3. Patient groups that speak to young adults. Young people use different channels and ways to access and share information than other adults, and PAH groups need to value and better tailor offerings to this audience.
  4. Individual patients, individual priorities. Every young patient has their own life circumstances and priorities, and multidisciplinary teams should be aware of this to set goals that support and enable the patient.

Recommended guidelines for implementing these goals include making sure all patient groups have their own Facebook page, arranging language training and specialty education for healthcare professionals, organizing networking events among young patients and patient-group educational sessions for parents, creating new informational materials that target young patients, and holding workshops on needed skills for employment.

The report is not yet available online, but Four Health Communications, the agency that helped to develop the report, is in contact with PHA Europe to possibly make it available on that group’s website. Those interested can also attain a copy by emailing a request to [email protected]

“Patient empowerment is something that is really important to me,” said Serena Lawrence, managing editor for columns at BioNews Services and a PH patient who was a member of the steering committee. “I was told not to have hope, that I would probably be dead by now, and not to waste my time with complimentary therapies. I would like to see doctors give us hope and provide us with more tools to live better lives.”

She added: “We have insight on how relationships, food and stress levels can impact cancer patients. I would love to see more studies done like this among PAH patients, so we have a better understand of what will be the most beneficial to us.”

One comment

  1. Judi McNair says:

    Judi McNair says:
    December 25, 2017 at 9:28 PM
    I have had the dx on the PE and high pressure in the lungs. The right side of my heart had been very enlarged but has gone down, possibly this started after I stopped breathing during carpel tunnel surgery or having reflux in both legs. I suffered from Sleep Apnea and now I have the c pat machine, and oxygen 24/7. Even with this I still have big panic attacks and can not breathe for a time and I am scared to death. I just want to find someone soon that can help more with where I am going and what I can expect. Will I improve to get off the machines. I want to save up for the small portable o2 maker too. Are they worth the big bucks to buy when insurance turns you down. I am scared and not sure what to do.
    which doctor do I believe.
    Is there something to do when you can’t get your air, besides pursed lip breathing. Every time I ran out I lose some control over my bladder. Any one else have that problem. There are times I half hope it to be over but I have a new grand daughter I do not want to leave this earth yes but I do feel like I am gonna either stroke or have a heart attack and it would be over.
    Please know I am NOT thinking of suicide. I have to much to live for. I am hoping I will be able to go back and cook for our soup kitchen. Any ideas will be greatly taken. So far I hear all the stuff I should wait to do. Sleep seems to be my activity most days, or struggling to get air in my lungs
    Thanks, but can you tell me one thing important to me.
    Will we get better, Will I get healed

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