Background Fatigue, sleep disturbances and pain, are symptoms of primary Sjögren's syndrome (PSS). However, current clinical interventions predominantly focus on treating patients' dryness symptoms.
Objectives To explore the experience of fatigue, sleep disturbances and discomfort in people with PSS, to investigate the impact of these symptoms on patients' daily lives and to develop an intervention strategy to address them.
Methods Qualitative focus groups with open-ended questions allowed participants to explore ideas together and focus on issues they perceived as being important. PSS patients (n=10) and spouses (n=3) took part in three focus groups divided into six sessions which were facilitated by two clinician researchers using a topic guide. Discussion topics included; the symptoms, strategies used by patients used to manage their symptoms, possible future intervention components proposed from the literature and possible modes of delivering future interventions. The meetings were audio-recorded, transcribed verbatim and analysed using thematic analysis1.
Results Patient participants all experienced these symptoms. Symptom severity varied within individuals and flares occurred unpredictably. Fatigue, sleep disturbances and discomfort, all affected patients' lives and those around them and sometimes felt overwhelming. Discomfort symptoms included oral and ocular dryness, tingling, nausea and difficulties tolerating light and noise. The invisible nature of these features meant patients often struggled to meet others' expectations, which affected their mood and resulted in social withdrawal. Fatigue was a major barrier to engaging in work, productivity and leisure activities. Sleep disturbances further compounded the fatigue. Patients employed a range of strategies to self-manage their symptoms to varying degrees of success.
Participants expressed a need for tailored support from health care professionals which included information provision, access to peer support and professional support to apply symptom management information. A three stepped model of care was proposed. The model includes different modes of delivering intervention content, including written information, education groups, peer support, digital self-management and one-to-one therapy. Intervention intensity increased with each step in the model.
Conclusions Symptoms of fatigue, sleep disturbances and discomfort all impact on PSS patients' daily lives and individualised interventions are needed to support self-management. Care needs to be tailored as different patients require variable levels of support. A stepped model of future symptom management delivery is proposed.
Braun V and Clarke V (2006) Using thematic analysis in psychology. Qualitative Research in Psychology, 3(4), 77–101.
Acknowledgements This project was funded by Arthritis Research UK (grant 20169) and the United Kingdom Occupational Therapy Research Foundation.
Disclosure of Interest None declared