Background : The pulmonary arterial hypertension (PAH) patient management pathway is often defined from the clinician or commissioner perspective. We wanted to gain an in-depth understanding of the patient self reported experience living with PAH. Objectives : Working to understand how a diagnosis of PAH impacts a patient9s life. Exploring the journey through first symptoms to specialist care and the 9life changes9 needed. Methods : Over 1000 General Practitioners were approached to put forward patients with PAH to participate in semi-structured, in depth qualitative interviews designed to determine the key themes emerging from the individual experiences of PAH. Interviews were audio-recorded for subsequent analysis using interpretive phenomenological analysis methodology. Results : A total of 8 patient interviews were analysed who had the following underlying aetiologies: IPAH (n=3) and ACHD (n=5), aged between 30 – 70 years and treated with different targeted PAH therapies. Patients interviewed were being managed at 4 different PAH Specialist Centres in the UK. Areas where patients9 needs were perceived not to be met by healthcare delivery included: 1) patient information materials did not cover PAH impact on co-morbidities, 2) dealing with a crisis on their own, 3) effective counseling when treatment fails, 4) securing disability allowance, 5) being able to live a normal life, 6) minimising the impact on their family. Conclusions : Specific areas have been highlighted where healthcare delivery does not meet patients9 needs. Living with a rare disease has its own unique challenges requiring careful consideration with potential to further improve the patient experience.

Allowance (engineering)

Patient Experience

Interpretative Phenomenological Analysis

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Hemodynamic changes, treatment and prognosis in clinical shock

Plastic & Reconstructive Surgery (1972)

R F Wilson Edward J. Sarver Julie A Rizzo

The relationship between cardiac output, total peripheral resistance index (TPRI) treatment, and prognosis was evaluated in 151 patients studied by the Shock Unit of the Detroit General Hospital. Although the hemodynamic values did not correlate with the severity of the shock and did not have a significant effect on the outcome of the patients, the drugs used and the response to treatment were critical. Drugs which maintained or increased any hemodynamic abnormality were detrimental. There was a significant increase in mortality when vasoconstrictor drugs were used in patients who had a low cardiac output (less than 2.5 liters/min/sq m) and were vasoconstricted (TPRI above 2,200 dyne-sec/cm 5 /sq m). Likewise, the use of vasodilators in septic patients, especially those with the highest cardiac outputs (above 3.5 liters/min/sq m) and most vasodilation (TPRI less than 1,300 dyne-sec/cm 5 /sq m), was also associated with a significantly increased mortality.

10.1097/00006534-197202000-00070

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Citations (2)

Cardiopulmonary complications after major surgery: a role for epidural analgesia?

PubMed (1987)

L N Diebel M. Lange F. Schneider Kim Mason R F Wilson

Cardiac index

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Citations (23)

The treatment of shock.

PubMed (1975)