One example of a multi-criterial context is the setting of decision making for the condition of pelvic organ prolapse (POP) in gynecology. Here, patients have to make important choices between different treatments options. POP is defined as the lower abdominal organs, e.g., the bladder or uterus prolapsing into the vaginal vault [
2]. The incidence of POP increases with age and, with 50% of women developing POP, it is a common finding [
3]. POP symptoms often affect women’s quality of life considerably [
4,
5]. Objective symptoms, such as urinary retention, severe constipation, urinary or fecal incontinence, occurrence of sexual problems and pain are seen, but also more subjective symptoms, e.g., perception of heaviness or dullness in the pelvic area are common [
2,
6,
7]. Apart from surgery, other treatment options offer symptom relief to a certain degree and include pessaries, vaginal hormone treatment, pelvic floor exercises and dialogue regarding various lifestyle changes [
2,
8,
9]. Lifestyle issues, e.g., obesity, inexpedient dietary habits, together with constipation, straining toilet habits and work involving heavy lifting can exacerbate symptoms. Some studies find evidence that occupational change to avoid heavy lifting, dietary changes, loss of body weight [
2] and cognitive training on good voiding habits, or information about appropriate bowel habits can decrease symptoms [
10].
The experience of specific symptoms can often be inconclusive for choice of treatment, because they are not correlated to severity or origin of the prolapse [
11,
12]. Surgical procedures are effective for some symptoms, but can lead to new symptoms, e.g., dyspareunia or urinary incontinence [
13]. Thus, clinicians need to know all important symptoms when diagnosing and offering a treatment plan for women with POP, but they also need to explore the impact of the symptoms on the patient’s daily life and explore the individual woman’s preferences and resources to comply with possible treatment options. In this multi-criterial context with multiple important criteria and unclear treatment effects, the overview for clinicians and patients and the decision making itself could become jeopardized. At the initial consultation, an exploration of symptoms as well as a clarification of patients’ preferences need to be correlated to available treatment options to offer good choices. Abhyankar and colleagues explored decision making in the context of POP with focus group interviews and found that women felt a lack of choice, of opportunity and support for involvement and a need for more patient-centered care [
14]. To practice patient-centered care, shared decision-making (SDM) is a possible clinical practice to support patient involvement in the communication and decision making process [
15].
SDM is of growing interest all over the world in various health care systems [
16]. According to a review performed by Makoul and colleagues, some of the most essential theoretical elements in SDM are 1) to explicate doctors’ knowledge, 2) to explicate patients’ values/preferences and 3) to present available options [
17].
In the Danish health care system, SDM is not yet a standard practice among health care professionals despite good intentions [
18]. A Danish survey from 2014 among 539 doctors and 824 nurses, found that the clinicians want to involve patients in their practice but think implementation is difficult due to lack of resources, knowledge and methods [
19]. Elwyn and colleagues developed a model for SDM in the clinical practice [
20]. The model presents a method with three important domains, which they suggest applied iteratively in the communication process and refer to as ‘talks’ (ibid.):
-
The team talk
-
The option talk and
-
The decision talk
During an ‘option talk’, alternative treatments choices are discussed and, finally, a ‘decision talk’ leads to preferences being elicited and eventually to informed and preference-based decisions (ibid.).
In continuation of Elwyn’s model, Stacey and colleagues have looked at the role of patient decision aids (PDAs) [
21]. PDAs are tools whose aim is to support patients’ involvement in decision-making; they are useful in the option talk and decision talk in particular. PDAs should apply to a set of international standards – e.g., the International Patient Decision Aids Standard (IPDAS) [
22‐
24]. PDAs include methods/strategies to help patients clarify their values in relation to options and to integrate these into the decision making process. PDAs should provide sufficient information for the decision making process. Nevertheless, it can be complicated for patients to grasp the amount and complexity of necessary information e.g., information on health condition, on all options, harms, disadvantages, side effects, outcomes and probabilities. Often, patients do not believe in their own ability to understand all the information given in consultations [
25,
26].
Thus, to support SDM in this complex multi-criterial setting a new tool could aim to combine symptoms, their interactions with evidence-based data or best estimates of outcomes, and correlate this with patients’ subjective perspectives. Multi-criteria decision analysis (MCDA) is a technique, that based on an algorithm, presents the best option according to the patients’ preferences [
1,
27]. The assessed presentation (a ranking of options) is calculated according to the extent to which an option creates value through meeting a set of criteria (ibid.). One example could be the MCDA aid to help with contraceptive choices [
28] or the internet-based PDA for prostate cancer screening [
29]. Existing PDAs for use in the context of gynecological patients with POP are developed in accordance with the international IPDAS criteria but they lack integration of the individually elicited preferences into generated value-based options that the MCDA technique offers [
30,
31].
In this project, the scope was to develop an IT-based tool with an MCDA algorithm to support patient involvement through the concept of SDM, by means of including revealed preferences from women suffering from POP. The tool is meant to become a steppingstone for the subsequent communication process. Many of the elements from ordinary PDAs e.g., additional information about all relevant treatment options and their pros and cons, will be introduced by the clinician during the consultation subsequent to the discussion of the MCDA presentation. In the tool, an integrated patient survey elicits patients’ preferences. This elicitation clarifies the individual woman’s values related to a range of user chosen criteria from an analysis of field data, e.g., costs of or possible risks associated to the available options. The algorithmic functionality within the tool will combine patients’ preferences with prefixed evidence-based data or best estimates from clinicians, in relation to each different option. The tool presents the different options in ranked order in a graphic presentation within the patient’s online medical journal. The ranked options should kick-start a communication process to support SDM especially the option talk and the decision talk during the consultations. A development phase sets out to develop the IT based tool with the MCDA algorithmic functionality. Subsequently a test phase will follow to test the feasibility of the tool in the real world.
This paper describes the development phase of the larger study: Development and testing of an online tool for patients with POP to support SDM. Thus, the aim of this paper is to provide an overall description and discussion of the first development phase. The paper describes the development methodology and describes how results from field research have informed the prototyping of the tool.