Psychosocial issues in pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension

Background

Of Sweden`s 9.5 million inhabitants approximately 600 are known to suffer from Pulmonary Hypertension (PH) including Pulmonary Arterial Hypertension (PAH) and 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 in their new role as having a life threatening disease. In a small group of PH cases in whom pharmacological treatment fails, lung or heart-lung transplantation may be an option. Hence, information after the diagnosis of PH is essential, as well as social support for chronically ill patients, which may have an impact on health by influencing the assessment of stressors and coping behaviour.

Given the complex presentation and treatment of PH, it is important that patients should be managed by a multidisciplinary specialist team consisting of physicians, nurses, physiotherapists, counsellors and others, who should all have extensive experience with PH. Relations must also be established with the patient’s community care team, including the primary care facility, as some routine health- and community care can be delivered in these settings..

The illness and treatment strategies in chronic disease tend to fluctuate over time, which means that patients may have new or different information needs at different times in life. Healthcare professionals must be made to realise that they play a pivotal role as providers of information to help patients understand and adhere to their prescribed medication, diet and exercise regimes Adherence depend on the interaction of several different factors, such as those arising from the patient, the physician and nurses or from the healthcare system. The World Health Organization (WHO) has concluded that non-adherence to medication is a common problem that leads to compromised health benefits and serious economic consequences in terms of wasted time, money and uncured disease..

Furthermore, PH is significantly important as an area of scientific research, as knowledge focusing on psychosocial issues in this spectrum of disease is very limited.

Aim

The aim is to describe the perceptions of received information regarding diagnosis, treatments, and management, as well self-rated adherence, coping and social support perceived by patients with PAH and CTEPH. Moreover, describe spouses experiences of information and support in relation to PAH and CTEPH.

Methods

Socio-demographic and medical variables, perceptions of received information regarding diagnosis, treatments, and management, as well self-rated adherence, quality of life, coping and coping strategies and social support will be measured as well as experiences and need of information and support. One goal with this research is to reveal the weak points of today’s care and to develop programs for an optimized support organization to match the actual need expressed by this group of patients and their next of kin.

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) and (LU 2015/112).

Instrumentation

Beside socio-demographic and situational data a battery of well-established questionnaires will be used:

The INFO25 (25 items) Arraras et al 2007;

The Social Network & Support Scale (SNASS) (19 items) Hildingh et al 2008;

Morisky Medication Adherence Scale34 (8 items) Morisky et 1989;

Beliefs about Medicines Questionnaire (19 items) Horne & Weinman 1999;

Coping, the 7-item Mastery Scale; Pearlin & Schooler 1978;

QoL, the 5-item Euro-QoL [EQ-5D]; Kind 1996;

as well as qualitative interviews, comprising different qualitative analysis approaches as, content analysis (Graneheim & Lundman 2004), critical incident analysis (Flanagan 1954),open ones but not without structure, focusing on the experience[s] from both patients and next of kin´s perspectives.

Ongoing Projects

-Relationship of perceived information, social support and coping after being diagnosed with Pulmonary Arterial Hypertension or Chronic Thromboembolic Pulmonary Hypertension –a Swedish national survey.

-Quality of life and adherence in patients with Pulmonary Arterial Hypertension or Chronic Thromboembolic Pulmonary Hypertension –a Swedish national survey.

-The effect of a nurse-led supportive care intervention in a PAH centre – A one year follow up study.

-Spouses experiences of information and support when living with partner suffering Pulmonary Arterial Hypertension or Chronic Thromboembolic Pulmonary Hypertension.

Completed studies

-Ivarsson B, Ekmehag B, Sjöberg T. Information experiences and needs in patients with Pulmonary Arterial Hypertension (PAH) and Chronic Thromboembolic Pulmonary Hypertension (CTEPH). Nursing Research and Practise 2014 doi 10.1155/2014/704094.

-Ivarsson B, Ekmehag B, Rådegran G, Hesselstrand R, Sjöberg T. Perceptions of Received Information, Social Support, and Coping in Patients with Pulmonary Arterial Hypertension or Chronic Thromboembolic Pulmonary Hypertension Clin Med Insights Circ Respir Pulm Med. 2014; 8: 21–28.

-Ivarsson B, Ekmehag B, Sjöberg T. Support Experienced by Patients Living with Pulmonary Arterial Hypertension and Chronic Thromboembolic Pulmonary Hypertension. Heart, Lung and Circulation Accepted 20150326