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. 2020 Oct;6(3):e001321.
doi: 10.1136/rmdopen-2020-001321.

Patient's experience of psoriatic arthritis: a conceptual model based on qualitative interviews

Alexis Ogdie  1 , Kaleb Michaud  2   3 , Miroslawa Nowak  4 , Rachel Bruce  5 , Sarah Cantor  5 , Carlijn Hintzen  6 , Philip J Mease  7
Affiliations

Patient's experience of psoriatic arthritis: a conceptual model based on qualitative interviews

Alexis Ogdie et al. RMD Open. 2020 Oct.

Abstract

Introduction: Psoriatic arthritis (PsA) is a heterogeneous chronic inflammatory musculoskeletal disorder that manifests as peripheral arthritis, dactylitis, enthesitis and spondylitis. PsA results in significant burden that impacts quality of life of patients. We examined the signs, symptoms and impacts reported by patients with PsA, to characterise the patient experience of PsA and develop a conceptual model representing this patient experience.

Methods: Semi-structured interviews were conducted with patients with PsA recruited through the FORWARD databank. Spontaneous and probed signs, symptoms and impacts of PsA were assessed. Patients rated the disturbance of these concepts on their lives using a scale from 0 ('does not disturb') to 10 ('greatly disturbs'). Signs, symptoms and impacts reported by >80% of patients with a disturbance rating of ≥5 were defined as salient concepts. Recruitment continued until concept saturation was achieved.

Results: 19 patients with PsA were interviewed. The interviews elicited 42 symptoms of which 8 had not been identified in a previous literature review encompassing 15 relevant articles. The most salient signs and symptoms elicited in the interviews were joint pain, skin symptoms, stiffness, swollen/inflamed joints and fatigue all with moderate to high disturbance ratings (range: 5.5-7.8). The most salient impacts were sleep disturbance, physical disability, effects on daily activities and feelings of frustration with also moderate to high disturbance ratings (range: 6.1-7.4).

Conclusions: The interviews highlighted the adverse impact PsA has on the patient's life and may inform on outcome variables or areas suitable to be assessed in PsA studies.

Keywords: Arthritis; Patient Reported Outcome Measures; Psoriatic; Qualitative research.

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Conflict of interest statement

Competing interests: AO has received consulting fees and/or honoraria from AbbVie, Amgen, Bristol‐Myers Squibb, Celgene, Corrona, Janssen, Lilly, Novartis, Pfizer and Takeda; grants from Novartis and Pfizer to the trustees of University of Pennsylvania and royalties to husband from Novartis. MN is an employee of Bristol-Myers Squibb and owns stock in Bristol-Myers Squibb. RB and SC are employees and CH a former employee of IQVIA, which received professional service fees from Bristol-Myers Squibb for conducting the qualitative research study. PJM has received research grants or served as a consultant or speaker for AbbVie, Amgen, Bristol-Myers Squibb, Boehringer Ingelheim, Celgene, Eli Lilly, Galapagos, Genentech, Gilead, Janssen Scientific Affairs, Novartis, Pfizer, Sun and UCB.

Figures

Figure 1
Figure 1
Salient symptoms reported by patients with psoriatic arthritis in qualitative interviews (n=19).
Figure 2
Figure 2
Fatigue-related concepts provided by patients with PsA. ‘n’ Corresponds to the number of patients mentioning each concept. *The concept mentioned by patients was ‘life and energy streaming out’. PsA, psoriatic arthritis.
Figure 3
Figure 3
Salient impacts reported by patients with psoriatic arthritis in qualitative interviews (n=19).
Figure 4
Figure 4
Final conceptual model for PsA. PsA, psoriatic arthritis; TNF α, tumour necrosis factor alpha.
See this image and copyright information in PMC

References

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