Abstract
Study purpose and background
There is growing concern that current outcome measures of back pain trials do not comprehensively capture what is important to patients. Some researchers believe we need to incorporate patients in the development of ‘next-generation’ outcomes. As a preliminary step to patient-interviews, we aimed to articulate ‘important change’ from the patients' perspective, as represented in reports of qualitative investigations inadvertently or directly exploring this.
Summary of methods used and results
We adopted a multi-strand search of electronic databases, and citation and reference tracking. Two researchers identified qualitative investigations relating to low back pain. Data were abstracted and synthesised using meta-ethnographic processes. Provisional results, based on 41 studies, indicate few studies have directly addressed this issue, but that data regarding experience and expectations may be useful. Whilst results suggest that practically, patients are concerned with (re-)engagement in meaningful activities, the more experientially focused literature suggests that patients want to be believed and have validated their experiences and identity as someone ‘doing battle’ with pain. Patients seek not only diagnoses, treatment and cure, but simultaneously reassurance of the absence of pathology. In the absence of tenable diagnoses, some feel they must not adopt a ‘sick role’. Some struggle, but manage to meet others' expectations; thereby undermining the credibility of their pain/disability claims. Others withdraw, fearful of disapprobation and unable or unwilling to accommodate social demands. Patients generally seek to regain their pre-pain healthy, and emotionally robust state.
Conclusion
Measurement of treatment effect must move beyond individual function to encompass the multidimensional impact of pain on identity and social participation.
Conflicts of Interest
None
Source of Funding
Arthritis Research UK
