The minimal clinically important difference for the patient activation measure in a culturally and linguistically diverse cohort with chronic conditions

To estimate the Minimally Clinically Important Difference (MCID) for the Patient Activation Measure (PAM) in a culturally diverse sample of people with chronic disease. This study was embedded in a larger cluster randomised trial exploring chronic disease management interventions in a culturally diverse sample of 254 adults. Patients were consecutively recruited across 16 outpatient clinics in Sydney, Australia and completed a range of outcomes related to the trial, including the Patient Activation Measure at recruitment and 6 months later. For the current study, the MCID for the PAM was estimated using two distribution methods and four anchor-based methods: mean change difference, and from the receiver operating characteristic curve, the Euclidean and Farra methods, and the Youden Index. A modified self-reported global impression of change, aligned to key elements of the PAM, was used as the external criterion and scores were dichotomised into ‘improved’ and ‘not improved.’ Therefore, the results are likely to overestimate the MCID. 228 participants completed pre- and post-assessments; 51% in the improved group and 49% in the not improved group. Anchor-based methods produced MCIDs between 4 and 7.9, with a value of 4.7 from the preferred Youden method. Distribution-based methods produced MCIDs ranging from 0.26 (standardised effect size) to 5.88 PAM points. Different methods of calculating the PAM for MCID provided different results. Using the preferred Youden Index method, an MCID of 4.7 PAM points was identified as clinically meaningful in this culturally diverse chronic disease cohort. Wider estimates from other anchor-based methods (4.0 to 7.9) are reported to illustrate methodological variability. Study data were collected during a two-phase hybrid cluster randomised controlled trial, approved by the South Western Sydney Local Health District Human Research Ethics Committee (2021/ETH12279) and registered prospectively on the Australian and New Zealand Clinical Trials Registry (ACTRN12622000697785). Patient activation empowers individuals to actively manage their health and healthcare. Greater activation helps patients to follow treatment plans and improve their health outcomes and experiences, potentially lowering their healthcare costs and improving their quality of life. The Patient Activation Measure (PAM) is a questionnaire used to assess a patient’s ability to self-manage their health-related condition. However, the amount of improvement in a person’s score on the PAM that corresponds to a meaningful improvement in their condition, known as the minimal clinically important difference (MCID), is relatively unexplored, especially in patients from culturally diverse backgrounds. This is a significant issue for clinicians and patients alike because an MCID number is influenced by the environment in which it was collected, reflecting the patients who completed it, their backgrounds and conditions, and other clinical factors. This study documents the range of MCIDs for the PAM that were calculated using different methods in a culturally diverse group of patients who received treatment in outpatient clinics for a range of chronic diseases. We found that improvements in patient activation of more than 4.7 in the PAM can be considered clinically relevant in the context of a culturally diverse group of patients with chronic conditions.