Rheumatic disease and fatigue: Participants’ experiences of an activity-pacing group

Figures & data

Table 1. Overview of the content of the activity-pacing intervention.

Before the first group session: As part of enhancing participants’ awareness of their everyday life, they complete an activity log^a describing their activities and breaks in a typical week First group session: Focussing on enhancing participants’ awareness of: what is challenging in their everyday life their strengths what they want to change in their everyday life Discussion of over- and under-activity, a varying level of activity and a gap between earlier and existing capacity (of activity) Introduction to a biopsychosocial model Evaluation of the participants’ activity logs^a: what is working which activities they perform too much/too little what is draining the participants which activities are prioritised by the participants; what they need to do and what they want to do structure/organisation of everyday life; balancing activity and rest? Between the two group sessions (‘homework’): Writing down activities that give or previously gave energy, joy, and/or well-being Second group session: Sharing reflections from the first session: whether participants have started setting goals for themselves reflections on the need for adjustments/adaptations Discussion of ‘homework’ Strategies for managing everyday life with fatigue discussion among participants guidance by OT: cognitive approach focussing on helpful/positive thought, introducing activity plan^b, prioritising, structuring/organizing everyday life, communication with family, friends and colleagues, setting limits, delegating tasks, simplify activities, clearly expressing own needs and desires.

Note. ^aAn activity log is a description of a participant’s typical week, illustrating their activity performance and periods of rest. ^bAn activity plan is a plan of how the participant wants everyday life to be, illustrating activity performance and periods of rest during a week [28].

Table 2. Main topics of the interview guide.

Opening questions How long have you experienced fatigue as a symptom of your rheumatic disease? How do you perceive fatigue to influence your everyday life; can you describe a typical day for me? Main questions During your rehabilitation programme you attended an activity-pacing group. Can you describe your experiences with this group intervention? Has anything changed since you attended the rehabilitation programme at the Department of Rheumatology? Can you describe a good day and a bad day? What is most important to you in the future? Can you describe what you miss/are satisfied with regarding the help you have received from health professionals until now? Closing questions Have you had any important experiences that we have not talked about? Do you have anything to add before we end the interview?

Note. The main questions primarily intend to inductively explore the aims of the study. The first of the main questions are mostly related to the first aim, whereas the other main questions are mostly related to the second and third aims.

Table 3. Participant demographics and clinical characteristics.

Participant	Gender	Age group	Diagnosis	Illness duration	Fatigue duration	Working situation	RAID fatigue score before rehabilitation
1	Female	40–59	SLE	6–8 years	6–8 years	Yes (mainly disability benefit)	3
2	Female	18–39	AS	>10 years	6–8 years	No (disability benefit)	5
3	Male	40–59	PsA	3–5 years	3–5 years	Yes	5
4	Female	18–39	AS	3–5 years	1–2 years	Yes	7
5	Female	18–39	Sjögren’s Syndrome	6–8 years	3–5 years	Yes	9
6	Female	40–59	RA	9–10 years	3–5 years	Yes	6
7	Female	40–59	PMR	1–2 years	1–2 years	No (sick leave)	7
8	Female	> 60	PsA	>10 years	>10 years	No (disability benefit)	8
9	Male	40–59	PsA	>10 years	3–5 years	Yes	6
10	Female	18–39	JIA	>10 years	3–5 years	Yes (partly sick leave)	5

Note. SLE: systemic lupus erythematosus; AS: ankylosing spondylitis; PsA: psoriatic arthritis; RA: rheumatoid arthritis; PMR: polymyalgia rheumatica; JIA: juvenile idiopathic arthritis; RAID: Rheumatoid Arthritis Impact of Disease questionnaire.

Table 4. Overview of core themes and sub-themes extracted from individual interviews.

	Participant
Core themes and sub-themes	1	2	3	4	5	6	7	8	9	10
Acknowledging fatigue and applying self-management strategies – it’s still challenging to manage everyday life
The need to be acknowledged and acknowledging living with fatigue	x	x	x	x	x	x	x	x	x	x
Strategies for living the life I desire	x	x	x	x	x	x	x	x	x	x
Concerns about activity and role performance – I really want to, but I’m not capable	x	x	x	x	x			x	x	X
The use of energy – a balancing exercise	x	x	x							X
Enhanced management of everyday life requires acknowledgement of fatigue and takes time
Rheumatologists should pay more attention to fatigue	x	x	x	x				x	x	X
A need for a follow-up and of valuing one’s efforts of self-managing		x	x	x	x		x	x	x	x

Heiberg T, Austad C, Kvien TK, et al. Performance of the rheumatoid arthritis impact of disease (RAID) score in relation to other patient-reported outcomes in a register of patients with rheumatoid arthritis. Ann Rheum Dis. 2011;70:1080–1082.

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