Redesigning MS patient experience - it's all about preparation

Abstract

Yearly, 270 people in the Netherlands are diagnosed with Multiple Sclerosis (MS) and over 16.000 people are already diagnosed with MS in the Netherlands [1]. Between 40% and 70% of MS patients suffer from cognitive complaints in various stages of their disease [8, 67]. The MS Centre Amsterdam has started a new so-called Second Opinion Multiple Sclerosis and COGnition screening (SOMSCOG) outpatient clinic for MS patients suffering from cognitive problems to research these cognitive problems.

A clear definition of patient experience is defined by the Beryl Institute: “Patient experience is the sum of all interactions, shaped by an organisations culture, that influence patient perceptions across the continuum of care” [19]. A literature study researching patient centred strategies showed that patient experience has an influence on quality of life. This connection shows that it is useful to improve patient experience to create a positive effect on quality of life.
To this end, the central aim of this research was to design a service or product-service system that helps to improve the patient experience of MS patients who visit the SOMSCOG outpatient clinic at VUmc.

Different user research methodologies have been employed, with research methods including interviews, contextmapping and observations. This study showed that the needs and the underlying values of MS patients visiting the SOMSCOG outpatient clinic are fundamental values. They long for transparency, clarity and honesty. Additionally the user study exposed an interesting problem: patients have difficulties preparing for visit of the outpatient clinic. A result of this lack of preparation is that the help request - which form the basis of diagnosis - is often suboptimally formulated.

The insights gained throughout the user study resulted in a patient journey in which the current experience is depicted. By combining the insights of the literature and user study a design goal was formulated.

The aim of the design process was create a tool that will help patients prepare to for their hospital visit, that will guide them through the day and provide an overview of the whole journey. This tool should improve the overall patient experience and make a positive impact on the patient’s quality of life.

Building on the patient journey and the insights from literature, a toolkit - named De Gids - has been developed with which patients can prepare themselves for the screening day of the SOMSCOG outpatient clinic.

De Gids encompasses a folder, an information guide and a preparation sheet. The information guide contains information of the screening day e.g. the schedule, possible outcomes and treatment options. It also contains a conversation starter which can be used by patients and a next of kin. The aim of this conversation starter is to trigger patients in sharing their concerns around cognitive problems with someone close to them.
The preparation sheet contains questions which prepare patients for the consultation with a neurologist on the screening day. It also functions as a conversation aid during this consultation. By filling out the questions on the sheet, patients will reflect on their concerns, expectations and a help request is formulated. This preparation of the help request should result in a better formulated help request.

When the help request is improved, the diagnosis can have a better connection with patients’ needs and the treatment options that will be offered might be more effective. This will ultimately result in better care and improved quality of life.