ABSTRACT
BACKGROUND: Stroke is a common, serious, and disabling healthcare problem with increasing incidence and prevalence. Following a stroke, identifying the factors associated with decisions about rehabilitation interventions is important to assess rehabilitation after stroke. The aim is to guide clinical staff to make patient-centered decisions. Fundamentally, decision makers cannot draw on evidence to consider the relevance of distinct functions and activities from the patient's perspective. Until now, outcomes of rehabilitation are generally categorized using the International Classification of Functioning, Disability and Health (ICF). This can be seen as a conceptual basis for the assessment of health and disability. Since the ICF does not distinguish importance between these aspects there is a need to value the most important clinical factors as well as related activities from a patients and public perspective to help guide therapists in effectively designing post-acute rehabilitation care for individuals following stroke. The research question is which ICF body functions and activities are of value to stroke patients? Which trade-offs are patients willing to make within the core elements? Health preference research (HPR) answers the need to develop additional preference weights for certain ICF dimensions. Patient preference information (PPI) values health conditions based on the ICF from a patient perspective. METHODS: In this study we conduct three best-worst scaling (BWS) experiments to value body function and activities from patients' and public perspective. Out of all ICF dimensions this research covers health conditions relevant to stroke patients in terms of body function, perception, and activities of daily living. Stroke patients as well as members of the general population will be recruited to participate in the online BWS surveys. Fractional, efficient designs are applied regarding the survey design. Conditional and multinominal logit analyses will be used as the main analysis method, with the best-worst count analysis as a secondary analysis. The survey is being piloted prior to commencing the process of data collection. Results are expected by the autumn of 2023. DISCUSSION: The research will add to the current literature on clinical decision-making in stroke rehabilitation and the value of certain body functions as well as related activities in neurorehabilitation. Moreover, the study will show whether body functions and activities that are currently equally weighted in international guidelines are also equally important from the point of view of those affected, or whether there are disconcordances in terms of differences between public judgements and patients' preferences.
Subject(s)
International Classification of Functioning, Disability and Health , Stroke , Humans , Disability Evaluation , Activities of Daily Living , Surveys and QuestionnairesABSTRACT
BACKGROUND: The gastrointestinal symptom score (GIS) is used in a standardized form to ascertain dyspeptic symptoms in patients with functional dyspepsia in clinical practice. As a criterion for evaluating the effectiveness of a treatment, the change in the summed total point value is used. The total score ranges from 0 to 40 points, in which a higher score represents a more serious manifestation of the disease. Each symptom is included with equal importance in the overall evaluation. The objective of this study was to test this assumption from a patients' perspective. Our aim was to measure the priorities of patients for the ten gastrointestinal symptoms by using best-worst scaling. METHOD: A best-worst scaling (BWS) object scaling (Case 1) was applied. Therefore, the symptoms of the GIS were included in a questionnaire using a fractional factorial design (BIBD-balanced incomplete block design). In each choice set, the patients selected the component that had the most and the least impact on their well-being. The BIB design generated a total of 15 choice sets, which each included four attributes. RESULTS: In this study, 1096 affected patients were asked for their priorities regarding a treatment of functional dyspepsia and motility disorder. Based on the data analysis, the symptoms abdominal cramps (SQRT (B/W): -1.27), vomiting (SQRT (B/W): -1.07) and epigastric pain (SQRT (B/W): -0.76) were most important and thus have the greatest influence on the well-being of patients with functional dyspepsia and motility disorders. In the middle range are the symptoms nausea (SQRT (B/W): -0.69), acid reflux/indigestion (SQRT (B/W): -0.29), sickness (SQRT (B/W): -0.26) and retrosternal discomfort (SQRT (B/W): 0.26), whereas the symptoms causing the least impact are the feeling of fullness (SQRT (B/W): 0.80), early satiety (SQRT (B/W): 1.54) and loss of appetite (SQRT(B/W): 1.95). DISCUSSION: Unlike the underlying assumption of the GIS, the BWS indicated that patients did not weight the 10 symptoms equally. The results of the survey show that the three symptoms of vomiting, abdominal cramps and epigastric pain are weighted considerably higher than symptoms such as early satiety, loss of appetite and the feeling of fullness. The evaluation of the BWS data has illustrated, however, that the restrictive assumption of GIS does not reflect the reality of dyspeptic patients. CONCLUSIONS: In conclusion, a preference-based GIS is necessary to make valid information about the real burden of illness and to improve the burden of symptoms in the indication of gastrointestinal conditions. The findings of the BWS demonstrate that the common GIS is not applicable to represent the real burden of disease. The results suggest the potential modification of the established GIS by future research using a stated preference study.
