Abstract
Background
Adolescents with chronic musculoskeletal pain experience pain that fluctuates within and across days. The aim of this review was to (i) synthesise the qualitative literature on adolescents’ experiences of fluctuating pain in musculoskeletal disorders, (ii) identify the concept of pain flare and how this may differ from daily fluctuation of pain, and (ii) identify knowledge gaps to inform the design of future research.
Methods
Six electronic databases (MEDLINE, EMBASE, PsycINFO, CINAHL, OpenGrey and Scopus) and reference lists of relevant articles were searched from inception to June 2018. Articles were eligible for inclusion if they were qualitative studies exploring the experiences of pain in adolescents, aged between 10–19 years, diagnosed with juvenile idiopathic arthritis (JIA) and chronic idiopathic pain syndromes (CIPS). Comprehensiveness of reporting was assessed using the Consolidated Criteria for Reporting Qualitative Health Research (COREQ) framework, and studies were analysed using thematic synthesis.
Results
Of the 3,787 records identified, 32 studies were included from 11 countries. 536 young people with JIA or CIPS participated in the studies, of which 509 had a diagnosis of JIA, and 27 with CIPS. Interviews were conducted in 29 studies, with 9 studies also combining interviews with focus groups, observations, questionnaires, researcher journaling, visual depictions and diaries. Although all included studies reported adolescent’s experience of pain, only 19 studies provide insight into the impact of fluctuating pain on an individual’s life and lived experience. 21 studies included data from parents, siblings, health professionals and/or individuals with other chronic illnesses, but efforts were made to only extract data referring to or expressed by adolescents with JIA or CIPS. Ages of patients ranged from 3 to 23 years, but all studies averaged within the adolescent range. Principal findings were synthesised under three themes: 1) symptom experience, 2) disruption and loss, and 3) regaining control. These themes can be seen to describe a journey through which the adolescent experiences fluctuating pain and associated symptoms, encounters the challenges to lifestyle that fluctuating pain presents, followed by employing coping strategies to regain a sense of control of their lives and pain. Each stage is experienced differently depending on individual factors such as adolescents’ developmental status, pain condition, and duration of the pain experience.
Conclusion
Adolescents with chronic musculoskeletal pain live with a daily background level of symptoms which frequently fluctuate and are associated with functional and emotional difficulties. It is not clear whether these symptoms and challenges are experienced as part of normal fluctuations in pain, or whether they reflect symptom exacerbations classified as flares. Further research is needed to explore the frequency and characteristics of pain flares, and how they differ from their normal fluctuations in pain.
Conflicts of Interest
The authors declare no conflicts of interest.
Factors affecting self-efficacy and pain intensity in patients with chronic musculoskeletal pain seen in a specialist rheumatology pain clinic