Conference: 2010 International PHA Conference and Scientific Sessions
Release Date: 06.24.2010
Presentation Type: Abstracts
Novartis Pharmaceuticals, East Hanover, NJ, USA
BACKGROUND: This study was designed to provide insights into living with, caring for, and treating PAH. Highlighting key disconnects between patients/physicians, patients/caregivers, and caregivers/physicians will help further the treatment of PAH.
METHODS: 10 PAH patients, 10 PAH caregivers, and 10 PAH physicians were interviewed using the latest available projective techniques to encourage respondents to project the underlying motivations, beliefs, attitudes or feelings towards PAH. To really grasp what living with PAH is like, most interviews occurred in the respondents’ homes.
RESULTS: (1) Physicians consider patients’ QoL more important than monitoring numerical improvements. (2) Four patient segments emerge: (i) Fighting Activists galvanize into action by researching PAH, seek out the best doctors, join/start a support group, and agree to aggressive treatments (ii) Struggling Loners do minimal research, are not aware nor interested in support groups, resist oxygen, and do not consider more advanced therapies (iii) Persistent Deniers ‘doctor shop’ for a milder diagnosis, avoid invasive tests/ therapies, and prefer alternative natural remedies (iv) Depressed Pessimists continue unhealthy habits, withdraw from family/friends, and spend much time sleeping the day away (3) The homebound life with PAH is lonely and boring, and as such, patients resort to sedentary activities, with the internet being an important pastime. (4) Because the patient is able to keep track of their treatment regimen, the PAH caregiver is not as involved in the treatment regimen as other caregivers may be, nor are they as involved in the dialogue with physicians related to treatment regimen.
CONCLUSIONS: (1) Patients should ensure they communicate clearly to physicians how their quality of life has been impacted by PAH. (2) Knowing which segment the PAH patient is a part of will help physicians and caregivers enhance communications with the patient (3) Not only is the internet an important tool for patients in disease education and awareness, it is also important in helping build a social support network. (4) By getting more involved with the patients’ treatment regimen, caregivers may help improve disconnects that may exist between patient/caregiver and physician/caregiver.