Therapists’ experiences of remotely delivering cognitive-behavioural or graded-exercise interventions for fatigue: a qualitative evaluation

Objectives: Fatigue is a challenging feature of all inflammatory rheumatic diseases. LIFT (Lessening the Impact of Fatigue in inflammatory rheumatic diseases: a randomised Trial) included remotely delivered personalised exercise programme (PEP) or cognitive-behavioural approach (CBA) interventions. The aim of this nested qualitative evaluation was to understand rheumatology health professionals (therapists’) perspectives of delivering the interventions in the LIFT trial. Methods: A subgroup of therapists who had delivered the PEP and CBA interventions took part in semi-structured telephone interviews. Results: Seventeen therapists (13 women, 4 men) who delivered PEP (n = 8) or CBA (n = 9) interventions participated. Five themes were identified: In ‘The benefits of informative, structured training’, therapists described how they were able to practice their skills, and the convenience of having the LIFT manual to refer to. When ‘Getting into the swing of it’, supporting patients gave therapists the confidence to tailor the content of the manual to each patient. Clinical supervision supported therapists to gain feedback and request assistance when required. In ‘Delivering the intervention’ therapists reported that patients valued the opportunity to address their fatigue and challenge their own beliefs. ‘Challenges in delivering the LIFT intervention’ therapists struggled to work collaboratively with patients who lacked motivation or stopped engaging. Finally, ‘Lift developing clinical skills’ therapists gained confidence and professional satisfaction seeing patients’ fatigue improve. Conclusion: Findings support the value of skills training for rheumatology health professionals to deliver a remote fatigue management intervention tested in the LIFT trial. These insights can inform service provision and clinical practice Lay summary What does this mean for patients ? Fatigue can be a challenge in inflammatory rheumatic diseases (IRDs). The LIFT study (Lessening the Impact of Fatigue in inflammatory rheumatic diseases: a randomized Trial) explored interventions to support people with fatigue. These were: a cognitive-behavioural approach (CBA), a personalized exercise programme (PEP), or usual care. People with IRDs were chosen randomly to take part in seven sessions of CBA, seven sessions of PEP or usual care. All sessions (aside from the first PEP session) were delivered over the phone. The aim of this study was to explore therapists' experiences of delivering the intervention. Seventeen therapists (13 women and 4 men) took part; eight had delivered the PEP intervention, and 9 delivered the CBA intervention. Therapists who delivered LIFT told us they enjoyed the chance to practice their skills, and that the LIFT manual gave them the confidence to tailor the intervention to each patient. Clinical supervision was valued. Therapists also shared that LIFT improved their skills and they were happy to see patients' fatigue improve over time. These new results can inform clinical practice, and how services are provided

Making the diagnosis of Chronic Fatigue Syndrome/Myalgic Encephalitis in primary care: a qualitative study

<p>Abstract</p> <p>Background</p> <p>NICE guidelines emphasise the role of the primary care team in the management of patients with Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME). A key stage in effective management is making an accurate early diagnosis, supported by appropriate referral.</p> <p>Methods</p> <p>A nested qualitative study within a multi-centre randomised controlled trial which aimed to explore GPs' views on their role in making the diagnosis of CFS/ME and subsequent management of patients in primary care. Semi-structured interviews with 22 GPs. Interviews were transcribed verbatim and an iterative approach used to develop themes from the dataset.</p> <p>Results</p> <p>GPs described difficulties in defining CFS/ME and suggested that their role in making a diagnosis was to exclude physical causes for the patient's symptoms, but they reported little confidence in positively attributing the label of CFS/ME to a patient and their symptoms. GPs suggested that the label of CFS/ME could be potentially harmful for the patient. The role of referral to secondary care was debated and GPs struggled defining their own role in management of this group of patients.</p> <p>Conclusions</p> <p>Until GPs feel comfortable making the diagnosis of CFS/ME and facilitating initial management, and have appropriate services to refer patients to, there will continue to be delays in confirming the diagnosis and patients presenting in primary care with fatigue may not receive appropriate care.</p> <p>Trial Registration</p> <p>ISRCTN 74156610</p

Remotely delivered cognitive-behavioural and personalised exercise interventions to lessen the impact of fatigue: a qualitative evaluation

Abstract Objectives Fatigue can be a disabling symptom of inflammatory rheumatic diseases (IRD). LIFT (Lessening the Impact of Fatigue in inflammatory rheumatic diseases: a randomised Trial) is a randomised trial of remotely delivered cognitive-behavioural approach (CBA) or personalised exercise programme (PEP) interventions, compared with usual care. The aim of this nested qualitative study was to evaluate participants’ experiences of taking part in the intervention, including their ideas about future service delivery. Methods Semi-structured telephone interviews with a subgroup of LIFT participants to discuss their views and experiences of the interventions. Results Forty-three participants (30 women) from six sites who had participated in CBA (n = 22) or PEP (n = 21) interventions took part. Five themes were identified in the thematic analysis: In ‘Not a miracle cure, but a way to better manage fatigue’, LIFT could not cure fatigue, however, most felt better able to manage after participating. Participants valued ‘Building a therapeutic relationship’ with the same therapist throughout the intervention. In ‘Structure, self-monitoring and being accountable’, participants liked the inclusion of goal setting techniques, and were motivated by reporting back to the therapist. After taking part in the interventions, participants felt ‘Better equipped to cope with fatigue’; more confident and empowered. Lastly, participants shared ideas for ‘A tailored programme delivered remotely’, including follow-up sessions; video calling; and group-based sessions for social support. Conclusion Many participants engaged with the LIFT interventions and reported benefits of taking part. This suggests an important future role for the remote delivery of fatigue self-management. Lay summary What does this research mean for patients? Fatigue can be a disabling symptom in inflammatory rheumatic diseases (IRDs). The LIFT Study (Lessening the Impact of Fatigue in inflammatory rheumatic diseases: a randomised Trial) looked at different interventions; a cognitive-behavioural approach (CBA), Personalised Exercise Programme (PEP), or usual care. CBA sessions addressed unhelpful thoughts and feelings. The PEP sessions supported people with IRDs to gradually increase their exercise levels. People with IRDs were randomly selected to take part in seven sessions of CBA, seven sessions of PEP, or usual care. All sessions except the first PEP session were delivered remotely by phone. The aim of this study was to explore people’s experiences of taking part. Forty-three people with IRDs (30 women, 13 men) were interviewed from six UK locations. Twenty-two took part in the CBA sessions, and twenty-one took part in PEP. People with IRDs who took part in LIFT told us about a range of benefits. These included feeling less fatigue and more confidence. Those in PEP told us they felt stronger. People with IRDs shared that they liked being able to talk about their fatigue with a supportive therapist. These are encouraging results for remotely-delivered research to support people with fatigue

Therapist Effects and the Impact of Early Therapeutic Alliance on Symptomatic Outcome in Chronic Fatigue Syndrome

Few studies have examined therapist effects and therapeutic alliance (TA) in treatments for chronic fatigue syndrome (CFS). Therapist effects are the differences in outcomes achieved by different therapists. TA is the quality of the bond and level of agreement regarding the goals and tasks of therapy. Prior research suffers the methodological problem that the allocation of therapist was not randomized, meaning therapist effects may be confounded with selection effects. We used data from a randomized controlled treatment trial of 296 people with CFS. The trial compared pragmatic rehabilitation (PR), a nurse led, home based self-help treatment, a counselling-based treatment called supportive listening (SL), with general practitioner treatment as usual. Therapist allocation was randomized. Primary outcome measures, fatigue and physical functioning were assessed blind to treatment allocation. TA was measured in the PR and SL arms. Regression models allowing for interactions were used to examine relationships between (i) therapist and therapeutic alliance, and (ii) therapist and average treatment effect (the difference in mean outcomes between different treatment conditions). We found no therapist effects. We found no relationship between TA and the average treatment effect of a therapist. One therapist formed stronger alliances when delivering PR compared to when delivering SL (effect size 0.76, SE 0.33, 95% CI 0.11 to 1.41). In these therapies for CFS, TA does not influence symptomatic outcome. The lack of significant therapist effects on outcome may result from the trial’s rigorous quality control, or random therapist allocation, eliminating selection effects. Further research is needed

Increased pain intensity is associated with greater verbal communication difficulty and increased production of speech and co-speech gestures

Effective pain communication is essential if adequate treatment and support are to be provided. Pain communication is often multimodal, with sufferers utilising speech, nonverbal behaviours (such as facial expressions), and co-speech gestures (bodily movements, primarily of the hands and arms that accompany speech and can convey semantic information) to communicate their experience. Research suggests that the production of nonverbal pain behaviours is positively associated with pain intensity, but it is not known whether this is also the case for speech and co-speech gestures. The present study explored whether increased pain intensity is associated with greater speech and gesture production during face-to-face communication about acute, experimental pain. Participants (N = 26) were exposed to experimentally elicited pressure pain to the fingernail bed at high and low intensities and took part in video-recorded semi-structured interviews. Despite rating more intense pain as more difficult to communicate (t(25) = 2.21, p = .037), participants produced significantly longer verbal pain descriptions and more co-speech gestures in the high intensity pain condition (Words: t(25) = 3.57, p = .001; Gestures: t(25) = 3.66, p = .001). This suggests that spoken and gestural communication about pain is enhanced when pain is more intense. Thus, in addition to conveying detailed semantic information about pain, speech and co-speech gestures may provide a cue to pain intensity, with implications for the treatment and support received by pain sufferers. Future work should consider whether these findings are applicable within the context of clinical interactions about pain