Background Clinical outcome measures are required to define patient status and demonstrate the efficacy, quality and safety of clinical care to patients, clinicians and managers. Current assessments of the patient's perspective lack detail and clinical relevance and fail to reflect modern MDT care
Objectives To develop a patient self-assessment tool that is clinically relevant, easy to administer, reproducible, practical and sensitive to change
Methods Through a reiterative process at informal focus groups, patients described the facets of their lives affected by rheumatic illness. The transcripts were themed into 12 domains- communication, relationships, knowledge, anxiety, fatigue, pain, movement, strength, independence, mobility, work and social. These domains were clustered into 3 categories, emotional, physical and functional, each with 4 component statements defining that domain. The patients scored each of the 12 statements on a visual analogue scale (0–10) reflecting the patients' status in that domain at a time point.
Use of the assessment tool was repeated with the patient blinded to original scores, whenever required eg at a time when clinician and/or patient reported a change in disease status or to assess the result of some intervention, physical, therapeutic or both
Results 212 patients have completed the paper based assessment tool each taking a maximum of five minutes on a minimum of two occasions at either physiotherapy clinic or day case attendance.
Patient feedback on clarity of the tool and value was scored and documented on an EXCEL database as were diagnosis, disease status, medication group and work status for analysis and grouping purposes.
“Vertical” aggregated score of whole or part of patient cohort were analysed to:
Define change in the 12 separate domains and 3 domain clusters.
Indicate cumulative or disease/medication specific changes in domains with treatment or time.
“Horizontal” scores allowed 360 deg assessments of individual patients at a time point
Showed changes for individual patients over time, indicative of patient outcome.
Conclusions This self-reported assessment tool is easily understood and completed by patients. It accurately reflects their perception of their rheumatic health status and priorities at that time. When used with detailed history taking and examination, it conveys the impact of arthritis on their life and exposes particular problems to be addressed. It allows the clinician to confirm the findings of their assessment against the patient's perceptions. Joint goals can be established and expectations from planned interventions agreed thus enhancing the patient/clinician partnership.
The assessment can be repeated at any appropriate or agreed time point to gauge progress and response to treatment within the 12 domains individually or as a composite score. This tool provides a valuable and detailed patient perspective to compliment clinical examination and investigation, and inform decision making before treatment change is planned
Disclosure of Interest None declared