Ullberg T, Zia E, Petersson J, and Norrving B. Changes in Functional Outcome Over the First Year After Stroke: An Observational Study From the Swedish Stroke Register. Stroke. 2014
Research looking at functional decline and patient centered quality of life outcome measures will only grow in the upcoming years. As doctors, it behooves us to work towards a better understanding of the patients’ view of their deficits. Have we as physicians historically ignored that which is of concern to the patient and focused more on that which is bothersome to the provider? This research looks at the other side of the equation and is critical in helping us answer caregiver questions about what to expect in the future.
Stroke is a devastating disease. Life can be dramatically altered in its aftermath including taking away from the patient the ability to care for their basic needs or activities of daily living (ADLs). There has been literature looking at potential causes for worse outcomes after ischemic stroke such as presenting seizure, hemorrhagic transformation, age and NIHSS at time of presentation but there is a paucity of longitudinal studies investigating reasons for change in functional outcome post stroke.
Ullberg et al attempt to bridge that gap through an observational study looking at functional decline after 3 months post stroke, a common end point in acute stroke trials. The aim of the study was to analyze case fatality and disability levels at 3 and 12 months as well as changes in functional outcomes between 3 and 12 months and predictors of dependency in ADLs. The data was obtained from the Swedish Stroke Register from 2008-2010 using ICD 10 codes for cerebral infarction, intracerebral hemorrhage or unspecified cerebrovascular event. The patients had to be completely independent in all ADLs prior to their stroke for enrollment. Data on functional ability was collected using a questionnaire at 3 and 12 months and it was noted whether the patient or someone else provided the input. ADL independence was defined as independent dressing, toileting and mobility indoors.
Of a total study population of 64,746 subjects, 8,483 patients (13.1%) were deceased by 3 months and 11,799 (18.2%) at 12 months. Of the remaining patients, 14.6% of men and 18% of women were ADL dependent in some capacity at 3 months with 8.1% of the total reporting performed without any participation from the patient (assisting person completed follow up). At 12 months, the numbers stating dependency had grown to 22.6% of men and 34.9% of women with an assisting person completing follow up in 10% due to patient inability. In a comparison of those who deteriorated between 3 and 12 months to those whose were stably independent at 12 months, the majority were women over 75y. Factors found to significantly predict deterioration were smoking, diabetes, atrial fibrillation, previous stroke, hemorrhagic stroke and a decreased consciousness level at time of admission.
In consideration of the results of this study, it would have been helpful for the authors to specify the percent change of the three reported ADLs. For example, how many patients only reported a decline in one ADL versus all three? The study associated prior stroke with loss of independence, but did infarct location play a role? What about size of the infarct or presenting NIHSS? One could easily imagine that a patient suffering a large MCA stroke for example would continue to decline after 3 months. Another helpful consideration would have been a description of support in the home. A higher proportion of independent subjects at 12 months were living alone, but did they have caregivers geographically close? Did someone provide some degree of in-home care? What about the percentage of patients discharged to rehab or who received outpatient physical therapy? Does this help combat dependency?
As vascular neurologists, we understand the significance of the mantra “time is brain” and for that reason, we rush to treat acute stroke emergently. The study by Ullberg et al demonstrates clearly that functional decline continues for up to a year post stroke. Further research into protective strategies is needed to prevent this decline, thereby significantly improving our patients’ quality of life.