What makes a patient satisfied with intrathecal baclofen treatment for spasticity : Expectations and experiences

Sammanfattning: Patients often report reduced spasticity and/or pain, improved function and comfort, and a high level of satisfaction after treatment with intrathecal baclofen (ITB). However, dissatisfaction, complications and unmet goals are also reported. The overall aim of the thesis was to identify, describe, and analyse what makes a patient satisfied with the effect of ITB treatment for spasticity, by considering patient expectations, experience, outcome, as well as satisfaction with treatment.  Four studies are included, all focusing on patients undergoing ITB treatment or about to start treatment. Study I, a qualitative interview study, describes the experiences of 14 patients on ITB from one university hospital. Study II, a cross-sectional study, includes 6 of the 7 main hospitals in Sweden working with ITB treatment. Through questionnaires and medical records, data were collected from 83 patients, on general expectations/optimism, satisfaction with treatment and reports on complications. Study III is based on data from study II on baclofen doses for 81 patients to analyse the development of dose patterns. Study IV, a prospective longitudinal study, includes 29 patients from 2 university hospitals. Data collection focused on pre-expectations, effect at 1-year follow-up and satisfaction with treatment. The results of the thesis are summarized in 3 topics: (1) variables of interest for formulation of patients’ pre-expectations; (2) pre-expectations of outcome and ongoing ITB treatment; (3) outcomes and satisfaction with ITB treatment. Together, those topics describe what makes a patient satisfied with ITB treatment. Patients reported improvements in symptoms and reduced consequences from spasticity, however improvements were not always as good as expected. Reported satisfaction with ITB treatment varied in the 4 studies, but mostly a high level of satisfaction was reported. Variables of importance for satisfaction were improved occupational performance, pre-expectations met and initial status regarding occupational performance.  In conclusion, results from this thesis emphasize the need for a dialogue between the patient and health care professionals to enable the formulation of realistic individual pre-expectations and goals. In addition, unmet pre-expectations, complications and frequent hospital visits should be included in the discussion about the benefits of ITB treatment versus the disadvantages.