Key outcomes for shoulder problems: An ICF-based study to determine how well patient reported measures capture patients' perspectives

Background: Evidence that patients are able to provide valid and reliable judgements about changes in their health status underpins the use of patient reported outcome measures (PROMs) that assess different aspects of physical, emotional and social functioning. However the extent that shoulder or upper extremity region-specific PROMs reflect the outcomes that patients with a musculoskeletal shoulder problem (MSP) consider important is not known. Purpose: The purpose of this mixed methods study was to identify which PROMs should be used in the self-assessment of outcome for MSP, from the patient's perspective. Methods: A qualitative approach was used to gain patients' perspectives. A purposive maximum variation sampling strategy was used to capture a breadth of relevant experiences of MSP, and in-depth individual interviews were conducted with fifteen patients at the outset of treatment. Transcribed, anonymised interview data were analysed using a four-stage analytical framework. Meaningful comparisons were made within and across individual accounts to identify important outcomes for patients. To facilitate comparison of the content of PROMs and the views of patients the outcomes assessed in twelve shoulder or upper extremity region-specific PROMs with acceptable psychometric properties identified through a systematic literature review were collated and linked to relevant categories of the International Classification of Functioning, Disability and Health (ICF). The unifying language and conceptual framework of the ICF was then used to compare the outcomes that patients identified as important and the content of PROMs to determine how adequately individual PROMs capture patients' perspectives. Results: Patients with a range of sociodemographic characteristics that typify a shoulder problem articulated personally relevant and important outcomes. Everyone expected to be symptom free, regain their former level of upper limb use, resume usual daily activities, regain a sense of emotional well-being, resume former family relationships and social interactions, and most expected to independently manage their own shoulder problem. Of the PROMs that have been most extensively investigated in validation studies there is accumulating evidence for the psychometric properties of validity, reliability, responsiveness, and practicality across a range of shoulder problems. The Disabilities of the Arm, Shoulder and Hand (DASH) reflected all ICF-based outcomes that patients identified as important. Of the remainder five PROMs included three-quarters, four one half and two one quarter of important outcomes for patients. Conclusion: Patients expect relief of symptoms to enable them to resume activities of daily living, work and recreation and get back to some sort of normality. Overall PROMs satisfactorily capture patients’ perspectives. The DASH should be used as the primary outcome measure for the assessment of shoulder symptoms and physical functioning, and the Simple Shoulder Test (SST), American Shoulder and Elbow Surgeons assessment form (ASES), or the Shoulder Pain and Disability Index (SPADI) should be considered as secondary outcome measures, with the SPADI being recommended for the assessment of pain. Implications: Future research should seek to gain a widely accepted expert consensus on a ‘core set’ of PROMs that should be adopted for use either at the end point in effectiveness trials, or on a case-by-case basis in clinical practice. Use of the same PROMs in published studies may facilitate the pooling of data in future meta-analyses, and in turn the development of best practice guidelines that are integral to the implementation of evidence-based practice. Research findings therefore have the potential to enable patients to participate in evaluating and improving the quality of their own future healthcare