Diagnosis and initial management in psoriatic arthritis: a qualitative study with patients

Abstract

Objectives PsA is an inflammatory condition that can cause pain, fatigue, swelling and joint stiffness. The consequences include impaired physical function, a high psychosocial burden, reduced quality of life and work disability. The presenting symptoms can be non-specific and varied, leading to delays in diagnosis or referral to specialist teams. The aim of this study was to explore patients' experiences of being diagnosed and the initial management of PsA. Methods The study used a qualitative design, with data collected in one-to-one, face-to-face semi-structured interviews. Results Fifteen newly diagnosed patients (<24 months) from three hospital sites in the southwest of England participated. Interviews were transcribed, anonymized and analysed using inductive thematic analysis. The following two main themes with sub-themes represent the data: symptom onset to specialist care: ‘it was the blind leading the blind’ (making sense of symptoms; mis-diagnosis and missed opportunities; and fast and easy access to expertise); and diagnosis as a turning point: ‘having somebody say you've got something wrong with you, I was euphoric’ (validation and reassurance; weighing up treatment options; taking on self-management; and acknowledging loss and change). Conclusion Participants were already dealing with functional limitations and were highly distressed and anxious by the time they received their diagnosis. Physical and mental outcomes could be improved by the implementation of existing psoriasis management guidelines and strategies for earlier referral from primary care to rheumatology and by the development of guidelines on educational, self-management and psychological support provision soon after diagnosis.

Personal healthcare costs borne by younger people living with arthritis in Australia: An exploratory observational study

“…People with lower health literacy levels may be particularly vulnerable to unnecessary healthcare expenditure and financial burden without receiving best‐practice care that provides real clinical value (Barton et al., 2014; Hill et al., 2015). Qualitative studies exploring patient experiences have detailed individual financial concerns around affording arthritis‐related treatment across the lifespan (Berkovic et al., 2020a; Binder‐Finnema et al., 2019; Dures et al., 2019). Rheumatologists have also acknowledged patients' financial concerns as a major barrier to affordable and sustainable care (Heidari et al., 2019; Kalkan et al., 2014).…”

Quality of life of patients living with psoriasis: a qualitative study

“…A study with 41 patients in the UK showed that individuals' poor understanding and expectations about their illness interfered with their relationships and limited their social interaction (Dures et. al., 2017).…”

A qualitative study of patients’ experiences of screening for psoriatic arthritis

“…In addition to possible diagnosis, screening appointments provided an environment to support participants’ self‐management by communicating advice about the nature and treatment of PsA, addressing negative illness beliefs and unhelpful coping strategies that participants may have developed to deal with their psoriasis, and by encouraging participants’ ownership of their health condition 6,7 . This contrasts with participants’ experiences of being diagnosed with PsA in the current healthcare context, where those who had experienced disbelief and misdiagnoses could arrive in rheumatology already anxious, in pain and distrustful of healthcare providers 8 …”