Home > In the News > 2014 > January > Believing and valuing the patient must be central part of Fibromyalgia therapy
Background: The alleviation of pain is a key aim of health care yet pain can often remain a puzzle as it is not always explained by a specific pathology. Musculoskeletal (MSK) pain is one of the most predominant kinds of chronic pain and its prevalence is increasing. One of the aims of qualitative research in health care is to understand the experience of illness, and make sense of the complex processes involved. However, the proliferation of qualitative studies can make it difficult to use this knowledge. There has been no attempt to systematically review and integrate the findings of qualitative research in order to increase our understanding of chronic MSK pain. A synthesis of qualitative research would help us to understand what it is like to have chronic MSK pain. Specifically, it would help us understand peoples' experience of health care with the aim of improving it.
Aim: The aim of this study was to increase our understanding of patients’ experience of chronic non-malignant MSK pain; utilise existing research knowledge to improve understanding and, thus, best practice in patient care; and contribute to the development of methods for qualitative research synthesis.
Methods: We used the methods of meta-ethnography, which aim to develop concepts that help us to understand a particular experience, by synthesising research findings. We searched six electronic bibliographic databases (including MEDLINE, EMBASE and PsycINFO) and included studies up until the final search in February 2012. We also hand-searched particular journals known to report qualitative studies and searched reference lists of all relevant qualitative studies for further potential studies. We appraised each study to decide whether or not to include it. The full texts of 321 potentially relevant studies were screened, of which 77 qualitative studies that explored adults’ experience of chronic non-malignant MSK pain were included. Twenty-eight of these studies explored the experience of fibromyalgia.
Results: Our findings revealed the new concept of an adversarial struggle that explains the experience of people with chronic MSK pain. This included the struggle to affirm self and construct self over time; find an explanation for pain; negotiate the health-care system while feeling compelled to stay in it; be valued and believed; and find the right balance between sick/well and hiding/showing pain. In spite of this struggle, our model showed that some people were able to move forward alongside their pain by listening to their body rather than fighting it; letting go of the old self and finding a new self; becoming part of a community and not feeling like the only one; telling others about pain and redefining relationships; realising that pain is here to stay rather than focusing on diagnosis and cure; and becoming the expert and making choices. We offer unique methodological innovations for meta-ethnography, which allowed us to develop a conceptual model that is grounded in 77 original studies. In particular, we describe a, collaborative approach to interpreting the primary studies.
Conclusion: Our model helps us to understand the experience of people with chronic MSK pain as a constant adversarial struggle. This may distinguish it from other types of pain. This study opens up possibilities for therapies that aim to help a person to move forward alongside pain. Our findings call on us to challenge some of the cultural notions about illness, in particular the expectation of achieving a diagnosis and cure. Cultural expectations are deep-rooted and can deeply affect the experience of pain. We therefore should incorporate cultural categories into our understanding of pain. Not feeling believed can have an impact on a person's participation in everyday life. The qualitative studies in this meta-ethnography revealed that people with chronic MSK pain still do not feel believed. This has clear implications for clinical practice. Our model suggests that central to the relationship between patient and practitioner is the recognition of the patient as a person whose life has been deeply changed by pain. Listening to a person’s narratives can help us to understand the impact of pain. Our model suggests that feeling valued is not simply an adjunct to the therapy, but central to it. Further conceptual syntheses would help us make qualitative research accessible to a wider relevant audience. Further primary qualitative research focusing on reconciling acceptance with moving forward with pain might help us to further understand the experience of pain. Our study highlights the need for research to explore educational strategies aimed at improving patients’ and clinicians’ experience of care.
Source: Health Services and Delivery Research, November 2013. By F. Toye, K. Seers, N. Allcock, M. Briggs, E. Carr, J. Andrews and K. Barker. Nuffield Orthopaedic Centre, Oxford University Hospitals NHS Trust, Oxford, UK
Children with fibromyalgia experienced significant improvements in pain and function without medications after an intensive program of physical therapy (PT), occupational therapy (OT), and psychosocial services, according to a new study. The improvements were still significant 1 year after completing the program.
David D. Sherry, MD, from the Division of Rheumatology at Children's Hospital of Philadelphia, and colleagues present their findings in an article published online July 21 in the Journal of Pediatrics.
"Our children with long-standing fibromyalgia exhibited significant improvement in nearly all of the functional and pain measures that we applied," the authors write.
The study enrolled 64 of 81 patients with juvenile fibromyalgia (median age, 16 years) who were already participating in an intensive musculoskeletal pain program. Most of the patients were white girls. The patients discontinued all their medications at enrollment.
Physical and occupational therapy involved 5 to 6 hours per day of therapeutic activities such as long-distance community ambulation and running up and down stairs, with the goal of reestablishing normal function and maximizing aerobic conditioning. In addition, patients participated 4 hours a week in cognitive and behavioral therapy one on one or in groups, along with art, music, and family therapies.
"Both the dose of PT/OT and the quality of the therapy differed from traditional PT/OT, in that we focused on desensitization and prolonged aerobics, strengthening, and functional activities individualized to the subjects, and did not inquire about pain or let pain or the fear of pain stop them," the authors write.
"We believe that this focus on function rather than pain helps children break the pain cycle and overcome the long-standing functional and pain limitations with which they presented."
The researchers used a pain visual analogue scale; the Pediatric Quality of Life Inventory, Team Report; a functional disability inventory; and other measures of ability to achieve and maintain normal functioning. The latter included the Bruce Treadmill Protocol, which consists of walking on a gradually accelerating treadmill for 21 minutes or until the patient is unable to continue.
The researchers tallied results at baseline, on completion of the intensive program, and 1 year later.
At the end of the program, the mean pain score decreased significantly from program entry (from 66 of 100 to 25 of 100; P = .001). One third of patients reported no pain at 1 year after program completion.
The mean Bruce Treadmill Protocol time fell slightly over the year after program completion, but scores remained significantly better than those at program entry (P < .001) and remained at or above the 90th percentile for age and sex compared with below the 25th percentile at enrollment.
Scores improved significantly initially and remained stable or improved at 1 year for all Pain Stages of Change Questionnaire, adolescent version subset; the Pediatric Quality of Life Inventory, Teen Report; and the Bruininks-Oseretsky Test of Motor Performance, Second Edition.
Fibromyalgia is an incurable musculoskeletal disorder and pain syndrome of unknown etiology and elusive treatment solutions. Defined by persistent, amplified, widespread pain associated with five or more of 18 trigger points, it affects between 2% and 6% of the pediatric population. More than 90% of patients report persistent pain and sleep disturbance, with persistent symptoms into adulthood.
"[T]hese children had long-standing pain that did not remit with less-intensive therapy," the authors note.
Bottom line, they say: "Children with fibromyalgia can be successfully treated without the use of medications and can regain normal function, achieve remission or marked reduction of pain, and experience increased quality of life with an interdisciplinary approach that uses much more intensive [physical and occupational therapy] than is common in most pain programs, along with cognitive, behavioral, and other psychosocial supports."
Funded by the Children’s Hospital of Philadelphia and the Snider Family. The authors have disclosed no relevant financial relationships.