Understanding treatment needs to improve patient centred care in patients with systemic sclerosis and psoriatic arthritis

Abstract

Systemic sclerosis and psoriatic arthritis are both chronic, heterogeneous rheumatic conditions with distinct pathophysiology and treatments. They share common problems of joint restriction, inflammatory joint pain and extra-articular manifestations. People with these two diseases suffer from cosmetic changes, an associated stigma, a high prevalence of mental health illness, impaired quality of life and reduced work productivity.

There are differences in the management of systemic sclerosis and psoriatic arthritis however there are shared treatment challenges in the management of both conditions. Evidence on the patient perspectives and priorities in the care of these two diseases is also limited and the specific needs of patients may not be adequately addressed in clinical encounters and research. A thorough and broad understanding of the values, experiences, priorities and preferences of patients with systemic sclerosis and psoriatic arthritis is required to ensure that clinical practice, health policy provision and further research align with patient needs.

The first part of this thesis (Chapters 2 and 3) centres on the perspectives of patients with systemic sclerosis and the reporting of outcomes in interventional trials in systemic sclerosis. The second part of this thesis focusses on understanding the needs of patients with psoriatic arthritis. Chapter 4 outlines the methods and methodology used in systematic reviews of qualitative research to inform an understanding of conducting systematic reviews. In Chapter 5, a systematic review and qualitative synthesis of primary qualitative studies of living with psoriatic arthritis and psoriasis is reported. Chapter 6 and Chapter 7 focus on the perspectives of patients and preferences when treating patients with medications in psoriatic arthritis. Chapter 8 describes the findings of a qualitative study using semi-structured interviews with rheumatologists and dermatologists regarding their experience and attitude toward shared care of psoriatic arthritis and psoriasis.

This thesis will provide an in-depth understanding of the experiences of living with systemic sclerosis and psoriatic arthritis to highlight gaps in the current management of these conditions