ACR Meeting Abstracts

ACR Meeting Abstracts

Abstract Number: 1393

Fatigue in Men and Women with Psoriatic Arthritis: An International Qualitative Study

Ana-Maria Orbai1, Suzanne Grieb2, Lilian van Tuyl3, Penelope Palominos4, Ying Ying Leung5, Karen Schipper6, Willemina Campbell7, Jessica Walsh8, Katherine Clegg Smith9, Laure Gossec10, Tania Gudu11, Premarani Sinnathurai12, Lyn March13, Soumya M. Reddy14, Xin Xiao Hui15, Clifton O. Bingham III16, Ricardo M. Xavier17 and Maarten de Wit18, 1Johns Hopkins University School of Medicine, Baltimore, MD, 2Johns Hopkins Bayview Medical Center, Center for Child and Community Health Research, Baltimore, MD, 3Amsterdam Rheumatology and immunology Center | VU University Medical Center, Amsterdam, Netherlands, 4Rheumatology, Hospital de Clinicas de Porto Alegre, Santa Cecilia, Brazil, 5North District Hospital, Hong Kong, China, 6VU University, Amsterdam, Netherlands, 7Rheumatology, Toronto Western Hospital, Toronto, ON, Canada, 8University of Utah School of Medicine, Salt Lake City, UT, USA, Salt Lake City, UT, 9Health, Behavior and Society, Johns Hopkins University Bloomberg School of Public Health, Batimore, MD, 10Sorbonne Universités, Paris, France, 11University of Medicine Carol Davila Bucuresti, Romania, Bucuresti, Romania, 12Rheumatology, University of Sydney, Sydney, Australia, 13Department of Rheumatology, Northern Clinical School, Institute of Bone and Joint Research, Kolling Institute, University of Sydney & Department of Rheumatology, Royal North Shore Hospital, St Leonards, Sydney, Australia, 14Department of Medicine, Division of Rheumatology, New York University School of Medicine, New York, NY, 15Rheumatology, Singapore General Hospital, Singapore, Singapore, 16Rheumatology, Johns Hopkins University School of Medicine, Baltimore, MD, 17Universidade Federal do Rio Grande do Sul Porto Alegre, Rio Grande do Sul, Brazil, 18EULAR standing committee of PARE, Zurich, Switzerland

Meeting: 2018 ACR/ARHP Annual Meeting

Keywords: , ,

Session Information

Date: Monday, October 22, 2018

Title: Patient Outcomes, Preferences, and Attitudes Poster I: Patient-Reported Outcomes

Session Type: ACR Poster Session B

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

Background/Purpose: Fatigue is prevalent and important to people with psoriatic arthritis (PsA)1.  Women with PsA have worse symptom and life impact scores than men, including fatigue2, and men are more likely to reach PsA remission3.  We aimed to identify how patients experience fatigue in an international qualitative study conducted to identify PsA domains for clinical trials4. Prior research suggested possible differences in how men and women experience fatigue.

Methods: We conducted and audio-recorded focus groups (FG) in six countries (Australia, Brazil, France, Netherlands, Singapore, US) and in-depth interviews in the US with participants with PsA. Two bilingual moderators (native and English languages) facilitated each FG in the native language using broad areas of inquiry: experience of, and life changes since, diagnosis; disease activity; key PsA features; and medical care. Recordings were transcribed verbatim, translated into English, checked for accuracy, and imported into Atlas.ti qualitative software. Two qualitative researchers coded each transcript independently using an iterative comparative process.  Codes were reconciled and organized into themes. In analyzing fatigue, we considered variability by participant category (men/women).

Results: There were 16 FG with 2-9 participants each and 90 participants in total; and 25 in-depth interviews (Table1).  We identified the following themes that describe the experience of fatigue for patients with PsA: 1) intersection of PsA disease activity and fatigue, 2) fatigue meaning and explanatory theories, 3) attitudes and communication about fatigue, 4) strategies people use when living with fatigue, and 5) feelings associated with fatigue.  We found differences between men and women especially for attitudes and communication, and feelings/emotional impact associated with fatigue.  Women were more likely to discuss sharing their fatigue experience and relying on close relationships for support. Men were more likely to describe seeking control and not communicating their fatigue. Both men and women reported associating fatigue with negative attitudes (Table2).

Conclusion:   The experience of fatigue in PsA is diverse and there are variations between men and women. Fatigue impacts what people do, how they communicate and how they feel. This has implications for fatigue assessment and treatment in PsA.  Patients may benefit from provider validation of their fatigue and from individualized treatment strategies.

References: 1. Gossec L. Ann Rheum Dis 2014; 2. Holland R. Ann Rheum Dis 2018 ; 3. Theander E. Ann Rheum Dis 2014; 4. Orbai AM. Ann Rheum Dis 2017;

 

Table 1. Patient characteristics by country

Participant characteristics

(N=115)

Australia

2 FG, n=8

Brazil

3FG, n=12

France

2FG, n=12

Netherlands

2FG, n=18

Singapore

2FG, n=13

USA

5FG, 3 sites, n=27

Interviews, 1 site, n=25

Women n (%)

6 (75)

8 (67)

5 (42)

10 (56)

6 (46)

17 (63)

16 (64)

Age mean (SD) yrs

58 (10)

60 (9)

55 (14)

57 (12)

45 (15)

53 (11)

53 (11)

PsA duration mean (SD) yrs

11 (9)

12 (9)

6 (6)

13 (8)

5 (5)

13 (12)

12 (11)

MHAQ (0-3)

0.7 (0.6)

0.9 (0.6)

0.5 (0.6)

0.6 (0.5)

0.2 (0.4)

0.3 (0.3)

0.3 (0.4)

Pain VAS (0-100)

47 (33)

56 (25)

29 (28)

45 (24)

15 (19)

38 (33)

38 (28)

Patient global VAS (0-100)

51 (35)

76 (19)

32 (30)

46 (24)

23 (25)

42 (31)

34 (30)

Patient global joints (0-100)

56 (36)

73 (18)

34 (29)

51 (24)

20 (22)

38 (33)

40 (29)

Patient global skin (0-100)

38 (35)

61 (40)

32 (32)

20 (20)

31 (26)

29 (27)

31 (34)

Fatigue VAS (0-100)

55 (25)

54 (38)

34 (33)

53 (28)

19 (20)

47 (32)

38 (32)

Stiffness VAS (0-100)

50 (34)

62 (29)

30 (31)

47 (30)

21 (25)

42 (34)

41 (29)

DMARD (%)

100

58

92

50

77

56

36

Biologic (%)

12

1

33

55

54

67

64

Abbreviations: FG focus group, SD standard deviation, MHAQ Modified Health Assessment Questionnaire, VAS visual analog scale, DMARD disease modifying anti-rheumatic drug (most commonly methotrexate, less common leflunomide, sulfasalazine or apremilast.

 

 

Table2. Illustrative quotes for each theme from participants with psoriatic arthritis

Themes

Representative quotes

1. Intersection of PsA disease activity and fatigue

        I am still wondering whether fatigue, which already played a role for a long time in my life, has anything to do with it. Maybe that is linked to [PsA] while I also have linked it to the way I cope with stress.  (M2.3, Netherlands)

        Fatigue, in the morning, when I was suffering the most, it would take me a long time even to think about getting out of bed, and it is not just the stiffness, it is just absolute tiredness.  It is not about strength, it is about just feeling really, really, tired, physically unable to roll out of bed. (W1.1, Singapore)

       I think it was just a real fatigue syndrome, because I got stiff, I got sore, I stopped pretty much all physical activity, I was just going through the motion of getting through all that I had to do in a day. But there was nothing, there was no recreational joy or release.  I was just miserable. (W22, US)

 

2. Fatigue meaning and explanatory theories

      For me, it is the illness that is wearing me out. (W1.3, France)

      When I first fell ill, my medication indeed made me extremely tired. Nowadays this is not so much the case anymore. (M1.3, France)

     Not really pain but I do not have much energy, I feel a bit weak.  If I did not take my medicine.  Pain for me is not so much. (M2.1, Singapore)

 

3. Attitudes and communication about fatigue

       You cannot show your fatigue to others, you need to support your family.  (W2.2, France)

      None of my co-workers are aware of my illness. […] Chances are that the people around you will think that they cannot rely on you. […] I do not want them to judge me as an unable-bodied person. When the fatigue kicks in, I take a short leave of absence. (M1.1, France)

     I do not allow myself to be tired.  I have pain, not always, especially in the hands. That restricts me somehow. (M2.1 Netherlands)

      I am functional, and I do not want to admit that I have fatigue with anybody, but sometimes I get tired, I just want to take a nap. (M1.1 US)

 

4. Strategies people use when living with fatigue

    If you have a dinner party, you are going to have 3 days to recover.  Therefore, you just cannot be bothered. (W1.2, Australia)

    When I am very tired then I just go and lie in bed for an hour. Then I can do something again.  I just need to go flat for a moment and then I take another pain reliever and then, everything just must go on. That seems to be going well. (M2.2, Netherlands)

     I don’t feel like going out at all, my wife, let’s go out for lunch or meal, I said I’m sorry, I’m not joining you all, but somehow, I am able go to church in the morning. After that, when I come back home, I will not go out again. (M1.1, Singapore)

 

5. Feelings associated with fatigue

    At times I cry because I want to do things, I am used to doing my housework. I do it, but it is not like it was before, it wears me out a lot, I get tired. (W2.1, Brazil)

     I had to stop completely all my sports activities to ensure saving my energy level for my job. […] You develop a feeling as if… you feel incapacitated.  You try to hang on to your essential daily routines.  You really have to fight for it. (W2.2, France)

     I also think that you become frustrated, stressed out because of your fatigue. (W1.2, Netherlands)

     For me it is the fatigue and the pain that make me depressed. (W1.1, Singapore)

 

 

Disclosure: A. M. Orbai, None; S. Grieb, None; L. van Tuyl, None; P. Palominos, None; Y. Y. Leung, None; K. Schipper, None; W. Campbell, None; J. Walsh, None; K. Clegg Smith, None; L. Gossec, None; T. Gudu, None; P. Sinnathurai, None; L. March, None; S. M. Reddy, None; X. X. Hui, None; C. O. Bingham III, None; R. M. Xavier, None; M. de Wit, None.

To cite this abstract in AMA style:

Orbai AM, Grieb S, van Tuyl L, Palominos P, Leung YY, Schipper K, Campbell W, Walsh J, Clegg Smith K, Gossec L, Gudu T, Sinnathurai P, March L, Reddy SM, Hui XX, Bingham III CO, Xavier RM, de Wit M. Fatigue in Men and Women with Psoriatic Arthritis: An International Qualitative Study [abstract]. Arthritis Rheumatol. 2018; 70 (suppl 9). https://acrabstracts.org/abstract/fatigue-in-men-and-women-with-psoriatic-arthritis-an-international-qualitative-study/. Accessed .

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