Sheikh, U. (Uzaifa) (2021) Shared decision-making in patients with capillary malformations: a two-center prospective cohort study. thesis, Medicine.
Full text available on request.Abstract
Background: Capillary malformations (CM) are congenital skin lesions due to a type of vascular malformation that decreases the Quality of Life (QoL) of patients. There are various treatment options available each with its own benefits and risks, and some lacking evidence. This makes CM a preference-sensitive condition that may benefit from shared decision-making (SDM). SDM is a decision-making modelin which clinicians and patients make a joint decision about the best therapeutic option. In order to implement SDM within CM care, a baseline measurement of the current SDM behaviour has to be conducted first. The aim of this study was to determine the level of SDM applied in CM practice currently. Materials and methods: We performed a prospective two-centre observational study in patients with CMs (or their parents when under sixteen) facing a treatment-related decision and who visited the Amsterdam University Medical Center (AUMC) location AMC and the Erasmus Medical Centre (EMC) between February 2021 and June 2021. Prior to the consultation, the patient’s and/or parents’ decision-making preference was measured using the Control Preferences Scale. After the consultation the subjective level of SDM from the perspective of the patient and/or parent, and the physician was asked through the Shared Decision-Making 9 Questionnaire (SDM-Q-9) and the Shared Decision-Making Doctor Questionnaire (SDM-Q-Doc). All consultations were audio recorded and scored by two independent researchers to assess the objective levels of SDM using the five item Observing Patient Involvement instrument (OPTION-5). All three these SDM measuring instruments had a scale of 0 to 100 (maximum SDM). Multivariate regression analysis was conducted on the OPTION-5 scores with patient and/or parent characteristics, and which centre the consultation was held at. Significance was a p value less than 0.05. Results: Twelve parents of CM patients, two adult patients, and four physicians were included. The majority of questionnaire respondents preferred an active role in decision-making (78.5%). Objective level of SDM was low with a mean OPTION-5 score of 31.3%. The multivariate regression analysis resulted in a non-significant model for these scores (R2 = -0.240, p = 0.771). Subjective levels of SDM were higher with a mean SDM-Q-9 score of 70.3% and mean SDM�Q-Doc score of 75.9%. Conclusions: Currently there is suboptimal SDM behaviour in CM care in the AUMC and EMC. However, the majority of the patients and/or parents want an active role in the decision-making process. Hence, there is much room for improvement in attaining this goal.
| Item Type: | Thesis (UNSPECIFIED) |
|---|---|
| Supervisor name: | Ubbink, prof. dr. D.T. and Langbroek, drs. G.B. and Wolkerstorfer, dr. A. and Horst, prof. dr. C.M.A.M. van der and Jong, drs. T.R. de |
| Faculty: | Medical Sciences |
| Date Deposited: | 06 Jan 2022 09:39 |
| Last Modified: | 06 Jan 2022 09:39 |
| URI: | https://umcg.studenttheses.ub.rug.nl/id/eprint/2966 |
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