Psychosocial issues in pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension                      

Research group (Hjärt-lungsjukdom - information, stöd och bemötande) and Project presentation

Background

Of Sweden`s 10 million inhabitants, approximately 800 persons suffer from pulmonary hypertension (PH) subgroups pulmonary arterial hypertension (PAH) or chronic thromboembolic pulmonary hypertension (CTEPH). Given the poor prognosis, compliance to treatment and follow up is of upmost importance. In addition, patients need to use or acquire coping mechanisms to deal with their role as a patient suffering from a life threatening disease with no cure. Hence, information as well as social support is essential and may have a great impact on health as well as quality of life by influencing the handling of stressors and coping behaviour.

Given the complex presentation and treatment of PAH and CTEPH, patients should be managed by a multidisciplinary specialist team consisting of physicians, nurses, physiotherapists, counsellors and others, who all have extensive knowledge and experience of the disease. Relations must also be established with the patient’s community care team, including the primary care facility, as some care can be provided in these settings.

In chronic diseases, the disease progress and treatment need and strategies change over time, necessitating different and updated information at different times in a patents life. Healthcare professionals need education and support in their pivotal role as providers of information. This includes information to help the patients understand and adhere to their prescribed medication, diet and exercise regimes. It has been concluded (World Health Organization) that non-adherence to medication is a common problem leading to compromised health and serious economic consequences in terms of wasted time, money and worsening disease.

Research focusing on psychosocial issues among patients with PAH and CTEPH is sparse. With the grave disease burden including complexity of treatment with many side effects, more knowledge in this area is of most importance.

Completed research

After some completed regional projects, a national survey examining perceptions of received information regarding diagnosis, quality of life, treatment and management, treatment adherence and attitudes towards drug treatment as well as coping strategies and social support was sent to patients diagnosed with PAH or CTEPH and registered in SPAHR.

The analysis has been completed and the results showed that a majority of the patients were satisfied with the received information and felt it was helpful, but still, almost half of them wanted more. Patients with PAH or CTEPH reported only a moderately impaired quality of life compared to the general population and while quality of life affected the patients perception of psychosocial support it did not alter the perception of their PAH-specific treatment. Almost all patients (95%) understood why they should take their drugs but more than half reported having concerns about side effects. This likely contributed to why only 57% reported that they took their medication according to the instructions they received. In addition, treatment compliance seemed to get worse the longer time had passed since the start of treatment.

The project, which includes both quantitative part and qualitative studies, started in 2011 and has received permission from the Ethical Review Board in Lund, Sweden (LU 2011/364),  (LU 2015/112 and  LU2016/161).

Ongoing and future Projects

• ·      Adherence to PAH-specific drug treatment will be studied by linking records in available national registries; SPAHR, National Board of Health and Welfare's Register of Medicines and Statistics Sweden's Population Register.
• ·     Registery study of health economic and quality of life is ongoing. 

Research group

Bodil Ivarsson Docent/Associate professor, Barbro Kjellström, Göran Rådegran and Anders Johansson,  all Lund University.