Patient-reported measures of treatment burden in stroke – a systematic review
Treatment burden refers to the workload of healthcare for people with long term conditions and the impact this has on wellbeing. Although advances in science and technology have led to improved treatments for stroke survivors, an increasing workload is placed on them as they are required to follow complex treatment regimes. For example, early supported discharge from hospital can move the burden of healthcare from health services to stroke survivors and their families.Excessive treatment burden can lead to negative outcomes e.g. reduced quality of life, non-adherence, less effective treatment and wasted resources. Treatment burden is currently underappreciated by healthcare providers and robust, comprehensive methods of measurement are lacking. The aim of this study is to systematically review all published patient-reported measures (PRMs) of treatment burden in people with stroke.
An initial scoping search was conducted that identified key words and papers. A formal search strategy was then created centred on: stroke; treatment burden; patient-reported measure. The following databases were searched: CINAHL; Embase; Medline; and PsychINFO. This uncovered 3368 papers. Screening of papers is underway using Distiller software. Two reviewers will independently screen each title, abstract and full paper, with third party involvement for disagreements. References, footnotes and citations will be searched. Inclusion criteria are: date of publication 2000 onwards; English language papers; studies describing the development, validation or use of a patient-reported measure of treatment burden in adult stroke survivors. Distiller software will be used during data extraction. Extracted data will include: descriptive data about the study; content of the measures; and psychometric properties. Each patient-reported measure included will be quality appraised against ISOQOL standards e.g. use of a conceptual and measurement model during development, reliability, content validity, construct validity, responsiveness, interpretability of scores, translation, patient and investigator burden.
Examples of potential treatment burdens that may be included in patient-reported measures are: logistical burdens (e.g. organising appointments, collecting prescriptions); technical burdens (e.g. taking medications, attending appointments, making lifestyle changes); relational burdens (e.g. enrolling family, interacting with health professionals) and sense-making burdens (e.g. conceptualising problems, setting goals, learning about treatments).
Through systematically reviewing the published literature and critically appraising the measures found we will inform the future development of a new, comprehensive measure of treatment burden for use in stroke survivors. This new patient-reported measure will enable a comprehensive assessment of treatment burden to be included in clinical consultations and as an outcome measure in clinical trials of complex interventions.