Fatigue & Rheumatoid Arthritis: managing an invisible symptom

Transcription

1 Fatigue & Rheumatoid Arthritis: managing an invisible symptom Sarah Hewlett FRCN PhD MA RN Arthritis Research UK Prof Rheumatology Nursing University of the West of England Hon Consultant Nurse, Univ Hosp Bristol

2 Participants and partners: Learning from patients with arthritis What is important to people with arthritis? What is fatigue? How can we measure fatigue? How can we help people manage fatigue? Patient Participants: Providing data Research Partners: Collaborating on research team Researchers: The link between them

3 Autoimmune Systemic Synovitis Joint destruction Flare, pain, disability Pharmacological Self-management Uncertain outcome J Holoshitz, MD, Univ Michigan Medical School

4 Partners: ACR core set Pain Function Tender joints Swollen joints Patient global opinion Physician global opinion Inflammatory markers Felson et al 1993

5 OMERACT 6: Brisbane, 2002 Partners thoughts on important outcomes UK Sweden Norway UK Australia Norway France/USA Netherlands

6 Participant interviews & questionnaires: What are important outcomes? Focus groups, 5 UK centres That s what you want the drugs to be able to do make it so that you re, so that they sort of compensate the tiredness RAPP-PI Pain Activities daily living Fatigue Visible joint damage Mobility Enjoy life again Independence Valued activities Carr et al, 2003 Sanderson et al, 2010

7 Participant questionnaires Not surprising fatigue ranks so high! Up to 97% of people with RA have fatigue 42-69% have severe fatigue 40 48% have daily fatigue Severity: Fatigue 1.6 Pain 1.4 Impact: Fatigue 5.4 Pain 5.4 Coping: Fatigue 7.4 Pain 7.6 Differentiates between levels of Quality of Life Impacts on paid employment Belsa 1993, Wolfe 1996, Katz 1998, Suurmeijer 2001, Milton 2002 Rupp 2004, Hewlett 2005, Ødegård 2008, Hoogmoed 2010

8 Partners: OMERACT 8, Malta 2006 Fatigue must now be measured in all RA clinical trials Kirwan, Hewlett et al 2007

9 Participants and partners: Learning from patients with arthritis Patient priorities can change research and practice What is fatigue? How can we measure fatigue? How can we help people manage fatigue?

10 Interviews with participants: Theme 1: Overwhelming Physical fatigue: Just weary, sort of exhausted, fatigued, I dunno, just as though everything s drained away from me (E) I call it my wipeout days...because I really don t want to do anything else but sleep and feel totally drained of energy (F) Thinking fatigue: I felt I haven t wanted to bother anything that needs thinking about (F) Wading through mud is what I usually call it (D)

11 Different to normal tiredness..tiredness after physical exercise is quite nice.. it s a lovely feeling... But this tiredness is just absolute (L) I just really feel very tired. Like abnormally tired, like not normal, not I have done something to make me tired (M)

12 Theme 2: Consequences It dumbs down everything I want to do (L) Family: I feel useless, because I ve got two grandchildren, I can t do things I want to do with them because I get too tired (C) Social: I have fell asleep when I ve had company round like, you know?.. they ve been chatting and all of a sudden I started to nod, it s not very sociable, really you know (B)

13 Consequences: Emotional toll Relationships: The kids & the partner and stuff, so everything becomes quite curt and short and brief (D) Negative emotions and loss of control: I feel very limited and restricted in what I can do..um, frustrating Yeah, it s it s a very negative feeling, um and it s like I ve lost the control over certain things I can do (J)

14 Theme 3: Self-management has variable success Pacing: You ve got to work to what you know you can do (A) Nothing works I ve learned ways to help a flare, but the fatigue? Some things do help it lessen but it s never gone away (J) I suggested it [fatigue] to him then, and he just sort of pooh-poohed it really (J) You don t get much response from doctors or consultants when you try and explain that there s a big chunk of what s wrong isn t something they can touch or feel or xray (D)

15 Research partner Include people not in a flare? Interview questions Analysed transcripts Agreed themes Overwhelming Dumbs down everything Can t manage it Teams don t help us Hewlett et al 2005

16 Participants and partners: Learning from patients with arthritis Patient priorities can change research and practice RA Fatigue is different to tiredness & has many facets How can we measure fatigue? How can we help people manage fatigue?

17 Developing a scale for fatigue BRAF Multi-Dimensional Questionnaire BRAF short scales x 3 (NRS) Marie Urban Nicklin et al, 2010a, 2010b

18 Participants focus groups: What word would make sense? Exhausted Fatigued Tired Weary Worn out Energy have/lack Drained Tired is not sufficient Fatigue = medical term Exhausted captures it! 3 x focus groups N=17 consensus 1 st 2 nd 3 rd 4 th 5 th Disliked Disliked

19 Participants focus groups: What is a sensible timeframe? Monday Tuesday Wednesday Thursday Friday Saturday Sunday

20 Participant interviews; Partner reviewed; Researchers links Cope or manage? There is definitely a difference there because you can feel like you might have managed your fatigue reasonably well, but you haven t actually coped with it very well Manage = practicalities; Cope = emotions Try both! Have you refused invitations because of fatigue? I am thinking of formal things, like a wedding invitation Have you refused invitations because of fatigue? e.g meeting up with a friend

21 Partners & researchers: Finalized BRAF (NRS) Please circle the number which shows your average level of fatigue during the past 7 days No Totally fatigue exhausted Please circle the number which shows the effect fatigue has had on your life during the past 7 days No Great deal Effect of effect Please circle the number which shows how well you have coped with fatigue during the past 7 days Not at Very all well well

22 Participant questionnaires: Impact is different to severity John Lucy Mary Severity Effect Coping Nicklin et al 2010b

23 Participants (200+) and researchers: Which are the best items for BRAF MDQ? Factor Difficult to dress Bath or shower Refused invitations Affected social life Difficult work/activity Cancelled plans Avoided making plans Forgotten things Concentrate Think clearly Lacked mental energy Made mistakes Upset you Down or depressed Less control in life Felt embarrassed How many days Numeric Scale fatigue How long each episode Lacked physical energy Partner Living with fatigue Thinking fatigue Emotional fatigue Physical fatigue

24 Participant questionnaires Women of same age, both working Global fatigue score Liz = 29, Annie = 28 % score of fatigue dimension Liz Annie Cognition Physical Emotion Living Dimensions of fatigue

25 Participants and partners: Learning from patients with arthritis Patient priorities can change research and practice RA Fatigue is different to tiredness & has many facets Patients are crucial to designing a measure of fatigue How can we help people manage fatigue?

26 What drives behaviours around fatigue? Symptoms Fatigue Thoughts Do it all before I crash with fatigue Feelings Normal mother Behaviours Housework +++ CBT Sage et al, Wiley 2008

27 Monday Tuesday Morning - am Afternoon/evening - pm X X X X Wed Thursday Friday Saturday X X X X X X X X X X X Sunday High Energy Activity Low Energy Activity Chill out or Refresh Sleep X Crash

28 Priorities for changing behaviours Friends & Family Finance Leisure & Social Learning Personal relationships Spiritual life or Well-being Health Work Paid/unpaid Goals (SMART) Weekly

29 Does CBT for self-management of RA fatigue, reduce its impact? 6 x 2 hour sessions: Pacing, sleep, stress, communication Compared to usual care (information giving x 1 hour) Hewlett et al 2011 Talked to psychologist about RA fatigue Joined participants in pilot course Helped re-format the course for delivery Reviewed patient handouts CBT significantly improved fatigue, disability, mood and sleep

30 Participant interivews I do more, going and meeting new people as well and that s really good I have gone back to sewing, I do a lot of machine embroidery, patchwork I actually feel more confident to try more things now My life has My friends & family, I would try & keep going.. instead of telling them about my illness.. But now I do. That has brought us a lot closer together changed so much - it s unbelievable

31 Helping us understand what works (interviews) What I liked about the course, they didn t tell us, they made us work it out ourselves We own our own plans and they ve not been foisted on us They had to throw the ball into the court for us to pick it up and what they have also had to do is stop us going off at a tangent Dures et al 2012

32 Participants and partners: Learning from patients with arthritis Patient priorities can change research and practice RA Fatigue is different to tiredness & has many facets Patients are crucial to designing a measure of fatigue Patients can help us design and refine interventions Thank you to Participants and Patient Research Partners Funders: Arthritis Research UK, Above and Beyond (Univ Hosp Bristol), GlaxoSmithKline Educational grant