Abstract
Background/Aims
Fatigue is a substantial, disabling symptom of inflammatory rheumatic diseases (IRDs). LIFT (Lessening the Impact of Fatigue in inflammatory rheumatic diseases: a randomised Trial) is a multi-centre three-arm randomised trial using remotely delivered cognitive-behavioral approach (CBA) and personalised exercise programme (PEP) interventions, compared to normal care alone, with the aim to lessen the impact of fatigue in patients with IRDs. Most sessions were delivered by telephone. This nested qualitative study explored patients’ experiences of taking part in the interventions.
Methods
A subgroup of patients who had completed follow-up after the LIFT trial took part in semi-structured telephone interviews to discuss their views and experiences of the interventions and subsequent impact on their lives.
Results
Participants were purposively sampled from six UK research sites to include variation in gender, age and IRDs. A total of 47 participants (33 women, 14 men) from the PEP (n = 22) and CBA (n = 25) arms took part. SB conducted an inductive thematic analysis of the data set. ED, CA, AW and KL reviewed a sub-set of the data. Five main themes were agreed after group discussion: There is no miracle cure, but LIFT is a way to manage fatigue: participants had disabling fatigue, with substantial impact on their work and social lives. Many were keen to understand the link between their IRD and fatigue. Participants reflected that LIFT could not offer a miracle cure, but most felt that they were better able to cope with their fatigue after taking part.
Building a therapeutic relationship: participants reported feeling validated by LIFT therapists who understood the impact of IRD-fatigue. They valued the continuity of interacting with the same therapist throughout the intervention.
The advantages of structure, self-monitoring and being accountable: many participants liked the structured format of the interventions and the inclusion of techniques such as goal setting because self-monitoring and being accountable to the therapist were helpful. Some felt guilty if they did not meet their goals but used this as an incentive to set more realistic objectives.
A new toolbox: many participants described feeling more confident and empowered after the interventions, with a new ‘toolbox’ of coping mechanisms; more motivated to socialise, exercise and better able to pace activity. PEP participants who were physically active prior to LIFT saw less benefit.
LIFT going forward - a tailored remotely delivered programme: participants’ ideas included follow-up sessions at six and twelve months; the option for video calling; and group-based sessions to boost engagement and receive social support from other patients with fatigue.
Conclusion
Many patients engaged with the LIFT interventions and reported benefits of taking part. This suggests an important role for the remote delivery of fatigue self-management as services respond and adapt to the current pandemic.
Disclosure
S.E. Bennett: None. E. Dures: None. C. Almeida: None. E. Bachmair: None. K. Lovell: None. L. Paul: None. A. Wearden: None. G.J. Macfarlane: None. N. Basu: None.
Fatigue is a substantial, disabling symptom of inflammatory rheumatic diseases (IRDs). LIFT (Lessening the Impact of Fatigue in inflammatory rheumatic diseases: a randomised Trial) is a multi-centre three-arm randomised trial using remotely delivered cognitive-behavioral approach (CBA) and personalised exercise programme (PEP) interventions, compared to normal care alone, with the aim to lessen the impact of fatigue in patients with IRDs. Most sessions were delivered by telephone. This nested qualitative study explored patients’ experiences of taking part in the interventions.
Methods
A subgroup of patients who had completed follow-up after the LIFT trial took part in semi-structured telephone interviews to discuss their views and experiences of the interventions and subsequent impact on their lives.
Results
Participants were purposively sampled from six UK research sites to include variation in gender, age and IRDs. A total of 47 participants (33 women, 14 men) from the PEP (n = 22) and CBA (n = 25) arms took part. SB conducted an inductive thematic analysis of the data set. ED, CA, AW and KL reviewed a sub-set of the data. Five main themes were agreed after group discussion: There is no miracle cure, but LIFT is a way to manage fatigue: participants had disabling fatigue, with substantial impact on their work and social lives. Many were keen to understand the link between their IRD and fatigue. Participants reflected that LIFT could not offer a miracle cure, but most felt that they were better able to cope with their fatigue after taking part.
Building a therapeutic relationship: participants reported feeling validated by LIFT therapists who understood the impact of IRD-fatigue. They valued the continuity of interacting with the same therapist throughout the intervention.
The advantages of structure, self-monitoring and being accountable: many participants liked the structured format of the interventions and the inclusion of techniques such as goal setting because self-monitoring and being accountable to the therapist were helpful. Some felt guilty if they did not meet their goals but used this as an incentive to set more realistic objectives.
A new toolbox: many participants described feeling more confident and empowered after the interventions, with a new ‘toolbox’ of coping mechanisms; more motivated to socialise, exercise and better able to pace activity. PEP participants who were physically active prior to LIFT saw less benefit.
LIFT going forward - a tailored remotely delivered programme: participants’ ideas included follow-up sessions at six and twelve months; the option for video calling; and group-based sessions to boost engagement and receive social support from other patients with fatigue.
Conclusion
Many patients engaged with the LIFT interventions and reported benefits of taking part. This suggests an important role for the remote delivery of fatigue self-management as services respond and adapt to the current pandemic.
Disclosure
S.E. Bennett: None. E. Dures: None. C. Almeida: None. E. Bachmair: None. K. Lovell: None. L. Paul: None. A. Wearden: None. G.J. Macfarlane: None. N. Basu: None.
| Original language | English |
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| DOIs | |
| Publication status | Published - 25 Apr 2021 |
| Event | British Society of Rheumatology (BSR) Annual Conference - Duration: 26 Apr 2021 → 28 Apr 2021 |
Conference
| Conference | British Society of Rheumatology (BSR) Annual Conference |
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| Period | 26/04/21 → 28/04/21 |