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Abstract Number: 658

Health Related Quality of Life in Psoriatic Arthritis from the Perspective of People Living with the Condition

Ana-Maria Orbai1,2, Suzanne Grieb3, Clifton Bingham4, Michelle Jones4, Grazyna Purwin5 and Katherine Clegg-Smith6, 1Rheumatology, Johns Hopkins University School of Medicine, Baltimore, MD, 2Rheumatology, Johns Hopkins University, Baltimore, MD, 3Johns Hopkins Bayview Medical Center, Center for Child and Community Health Research, Baltimore, MD, 4Johns Hopkins University, Baltimore, MD, 5Johns Hopkins Arthritis Center, Baltimore, MD, 6Health, Behavior and Society, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD

Meeting: 2015 ACR/ARHP Annual Meeting

Date of first publication: September 29, 2015

Keywords: patient outcomes, Patient participation, psoriatic arthritis and quality of life

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Session Information

Date: Sunday, November 8, 2015

Title: Spondylarthropathies and Psoriatic Arthritis - Clinical Aspects and Treatment Poster I: Clinical Aspects and Assessments

Session Type: ACR Poster Session A

Session Time: 9:00AM-11:00AM

Background/Purpose: Psoriatic arthritis (PsA) is a complex inflammatory disease with variable phenotype affecting skin, joints, ligaments/tendons, nails, and the spine. Heterogeneity of clinical manifestations complicates PsA assessment and broadens its impact (1). PsA activity is a difficult concept to measure since outcome measures in use do not systematically cover health areas prioritized by patients (2). The experience of PsA from the perspective of patients, while essential for choosing outcome measures, is not known.

Methods: Patients with PsA meeting CASPAR criteria followed longitudinally in an academic clinic were recruited after informed consent. Focus groups (FG) and individual interviews were conducted using a semi-structured guide on the following topics: 1) presence of PsA in daily life; 2) life changes since diagnosis; 3) PsA activity. Qualitative data were analyzed by 3 researchers (1 physician, 1 medical anthropologist, 1 sociologist) using inductive thematic analysis and discussions to achieve consensus.

Results: Data were analyzed from 8 participants in 2FGs and 25 participants in individual interviews. Demographics and clinical characteristics are described in Table and represent the range of PsA manifestations.

Table. Participant demographics and clinical characteristics

Participant demographics and characteristics

FG1

(n=5)

FG2

(n=3)

Individual interviews (n=25)

Age (years), mean(SD)

60 (8.5)

54.3 (4.7)

52.9 (10.6)

Sex, n(%)

Female

Male

4 (80)

1 (20)

3

0

16 (64)

9 (36)

Race, n(%)

African American

Asian

Caucasian

Other

0

0

5

0

0

0

3

0

0

1 (4)

23 (92)

1 (4)

Ethnicity, n(%)

Hispanic

Non-Hispanic/Latino

Not reported

0

1

4

0

1

2

0

15(60)

10(40)

Psoriatic arthritis symptom duration (yrs), mean(SD)

15.2 (13.7)

6.7 (6.4)

15.8 (10.2)

Psoriatic arthritis disease diagnosis duration (yrs), mean(SD)

14.0 (13.7)

6.7 (6.4)

11.5 (10.8)

CASPAR criteria

Psoriasis, n(%)

Ever

None

5

0

3

0

24(96)

1 (4)

Nail Psoriasis, n(%)

Ever

None

2(40)

3(60)

2(67)

1(33)

8(32)

17(68)

Dactylitis, n(%)

Ever

None

2(40)

3(60)

1(33)

2 (67)

10(40)

15(60)

Rheumatoid factor, n(%)

Positive

Negative

Unknown

0

3(60)

2(40)

0

3

0

2 (8)

18(72)

5(20)

Juxta-articular new bone formation, n(%)

Yes

None

Unknown

1(20)

1(20)

3(60)

1(33)

2(67)

0

2 (8)

12(48)

11(44)

Patient Reported Outcomes

mHAQ* (range 0-3), mean(SD)

0.55 (0.69)

0.17 (0.29)

0.31 (0.38)

Pain VAS** (0-100), mean(SD)

41.2 (29.6)

36.7 (53.3)

37.8 (27.6)

Patient Global Disease Activity VAS, mean(SD)

41.8 (30.5)

38.3 (52.0)

34.3 (30.3)

Fatigue VAS, mean(SD)

44.2 (35.7)

35 (52.0)

38.0 (31.8)

Stiffness VAS, mean(SD)

53.3 (37.9)

37.7 (50.0)

41.4 (29.0)

Patient Joints VAS, mean(SD)

45.6 (40.7)

29.7 (39.6)

39.5 (29.2)

Patient Skin VAS, mean(SD)

46.3 (25.6)

21.3 (25.2)

30.5 (34.1)

Medications

Biologic, n(%)

Yes

DMARD only

5

0

3

0

16(64)

9(36)

*mHAQ modified Health Assessment Questionnaire, score range 0-3

**VAS visual analog scale 0-100mm

Several overarching themes and corresponding codes were identified: 1) Psoriatic disease state/symptoms; 2) Life impact; 3) Strategies to minimize life impact. A draft conceptual framework based upon the coding structure for the PsA experience is illustrated in Figure 1.

Conclusion: Participants described the PsA experience not only through symptoms but also through life impact and individual strategies to prevent/minimize impact on their life. Comprehensive PsA assessment may need to include measures for life impact and also for effectiveness of individual compensating strategies.

Figure 1. Conceptual framework for PsA experience elicited from qualitative research with participants with PsA.

  1. Taylor WJ, et al. Effect of psoriatic arthritis according to the affected categories of the international classification of functioning, disability and health. J Rheum. 2010;37:1885-91.
  2. Stamm TA, et al. Concepts important to patients with psoriatic arthritis are not adequately covered by standard measures of functioning. Arthritis Rheum. 2007;57:487-94.

Disclosure: A. M. Orbai, None; S. Grieb, None; C. Bingham, UCB Pharma, 5; M. Jones, None; G. Purwin, None; K. Clegg-Smith, None.

To cite this abstract in AMA style:

Orbai AM, Grieb S, Bingham C, Jones M, Purwin G, Clegg-Smith K. Health Related Quality of Life in Psoriatic Arthritis from the Perspective of People Living with the Condition [abstract]. Arthritis Rheumatol. 2015; 67 (suppl 10). https://acrabstracts.org/abstract/health-related-quality-of-life-in-psoriatic-arthritis-from-the-perspective-of-people-living-with-the-condition/. Accessed .
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