Participant characteristics
Online PtDA users
The age of online users (n = 86) ranged between 19 and 98 (Table 2). The majority of the online users had memory complaints themselves (n = 61), the remainder were either worried about the memory of a significant other (n = 20) or were healthcare professionals (n = 5). Most users came into contact with the PtDA because they searched for information on memory complaints online by themselves (76.7%) and indicated they used the PtDA without the presence or help of another person (90.1%). Of the 86 online users, 13 (n = 9 persons with memory complaints; n = 1 significant other; n = 3 healthcare professionals) also participated in a semi-structured interview (Table 2).
GPs and practice nurses of the S-DeciDeD project
Of the 20 GPs involved in the S-DeciDeD project, five GPs, and four practice nurses participated in the semi-structured interviews. Participating healthcare professionals were on average 49.6 years old (SD = 11.9, range 33–65) and were mostly female (88.9%). Healthcare professionals had on average 14.9 years of working experience (SD = 8.7, range 3–32) and mostly worked in small general practices (66.7%).
Acceptability
A total of 86 online users (i.e., people with memory complaints, significant others, and healthcare professionals in general practice) filled out the survey after using the PtDA. Most users were satisfied with the information presented in the PtDA (Table 3). Furthermore, the majority of the users were satisfied (69.8%) with the length of the PtDA and the information presented (65.1%). Most users thought the information in the PtDA was balanced (72.1%) and was enough to help a person decide on diagnostic testing for dementia (59.3%). Moreover, most users (61.6%) found the PtDA useful in deciding on diagnostic testing for dementia.
Similar to the survey data, analysis of the semi-structured interviews with online users, GPs and practice nurses resulted in one theme related to acceptability, in which the PtDA was thought to be user-friendly but ambiguities about its goal were also expressed (Table 4).
Theme 1: PtDA is perceived as user-friendly and well-structured
Most people with memory complaints perceived the PtDA as well-structured, written in layman's terms, and easy to use without the help of a healthcare professional. Some people with memory complaints, however, found the phrasing of the introduction of the PtDA misleading. They thought they were going to do a memory test.
‘The initial blue screen and the time indication made me think it was a memory test’ (online user, person with memory complaints, female, age 68)
All GPs and practice nurses indicated they perceived the PtDA as user-friendly. They thought the information was clear and balanced, written in lay terms, well-structured, and suited for older people with memory complaints and caregivers.
‘I think if you have difficulties with organization, memory issues, it aligns well with the target audience for which it is intended’ (practice nurse, female, age 56)
Table 2
Participant characteristics of online users
|
|
Survey (n = 86)
|
Interview (n = 13)
|
Persons with memory complaints
|
|
N = 61
|
N = 9
|
Gender, female (%)
|
|
38 (62.3)
|
5 (55.6)
|
Age (M, SD)
|
|
70.0 (11.1)
|
73.1 (10.1)
|
Education level* (%)
|
Low
|
27 (44.3)
|
1 (10)
|
|
Middle
|
5 (8.2)
|
1 (10)
|
|
High
|
29 (47.5)
|
7 (77.8)
|
Reason for using PtDA (%)
|
Worried about own memory
|
59 (96.7)
|
9 (100)
|
|
Advised by health care professional
|
2 (3.3)
|
0 (0)
|
Use PtDA (%)
|
Alone
|
54 (91.4)
|
9 (100)
|
|
Together with a significant other
|
4 (6.6)
|
0 (0)
|
|
Together with a health care professional
|
1 (1.6)
|
0 (0)
|
Came into contact with PtDA via (%)
|
Own search on the internet
|
50 (82.0)
|
5 (55.6)
|
|
Via general practice
|
2 (3.3)
|
0 (0)
|
|
By accident via link on other website
|
6 (9.8)
|
4 (44.4)
|
|
Via family member or friend
|
2 (3.3)
|
0 (0)
|
|
Other sources
|
1 (1.6)
|
0 (0)
|
Significant other of person with memory complaints
|
|
N = 20
|
N = 1
|
Gender, female (%)
|
|
16 (80)
|
1 (100)
|
Age (M, SD)
|
|
64.1 (17.7)
|
40
|
Education level* (%)
|
Low
|
9 (45.0)
|
0 (0)
|
|
Middle
|
2 (10.0)
|
0 (0)
|
|
High
|
9 (45.0)
|
1 (100)
|
Relationship to person with memory complaints
|
Spouse
|
9 (47.4)
|
0 (0)
|
|
Son/Daughter
|
8 (36.8)
|
1 (100)
|
|
Not specified
|
3 (15.8)
|
0 (0)
|
Reason for using PtDA
|
Worried about memory significant other
|
18 (90)
|
1 (100)
|
|
Advised by health care professional
|
2 (10)
|
0 (0)
|
Use PtDA
|
Alone
|
17 (85.0)
|
1 (100)
|
|
Together with significant other
|
3 (15.0)
|
0 (0)
|
|
Together with health care professional
|
0 (0)
|
0 (0)
|
Came into contact with PtDA via (%)
|
Own search via internet
|
16 (80.0)
|
1 (100)
|
|
General practice
|
2 (10.0)
|
0 (0)
|
|
By accident via link on other website
|
0 (0)
|
0 (0)
|
|
Family member or friend
|
1 (5.0)
|
0 (0)
|
|
Other sources
|
1 (5.0)
|
0 (0)
|
Health care professionals
|
|
N = 5
|
N = 3
|
Gender, female (%)
|
|
4 (80)
|
2 (66.7)
|
Age (M, SD)
|
|
56.6 (9.8)
|
53 (7.9)
|
Education level* (%)
|
Low
|
0 (0)
|
0 (0)
|
|
Middle
|
0 (0)
|
0 (0)
|
|
High
|
5 (100)
|
3 (100)
|
Background
|
GP
|
2 (40)
|
2 (66.7)
|
|
Practice nurse
|
1 (20)
|
1 (33.3)
|
|
Specialist geriatric medicine
|
2 (40)
|
0 (0)
|
Note. Some participants did not complete the whole survey, sample sizes can therefore be different per characteristic. * = Educational level was categorized into low (at most primary education), mid (junior vocational education), and high (senior vocational or academic education) according to a Dutch grading system (33)], which is comparable with the Standard Classification of Education (34) |
Table 3
Evaluation of the PtDA’s acceptability
Acceptability question
|
|
|
|
|
Person with memory complaints n (%)
|
Significant other
n (%)
|
Healthcare professionals
n (%)
|
The length of the PtDA
|
|
|
|
Too short
|
8 (14.3%)
|
5 (25.0%)
|
1 (20.0%)
|
Too long
|
3 (5.4%)
|
4 (25.0%)
|
0 (0.0%)
|
Good
|
45 (80.4%)
|
11 (55.0%)
|
4 (80.0%)
|
Quantity of information in PtDA
|
|
|
|
Too much
|
6 (11.1%)
|
1 (5.0%)
|
0.0 (0.0%)
|
Too little
|
8 (14.8%)
|
7 (35.0%)
|
1 (20.0%)
|
Good
|
40 (74.1%)
|
12 (60.0%)
|
4 (80.0%)
|
The information provided on causes of memory complaints
|
|
|
|
Bad
|
6 (10.7%)
|
0 (0.0%)
|
0 (0.0%)
|
Reasonable
|
16 (28.6%)
|
8 (40.0%)
|
0 (0.0%)
|
Good
|
28 (50.0%)
|
12 (60.0%)
|
1 (20.0%)
|
Very good
|
6 (10.7%)
|
0 (0.0%)
|
4 (80.0%)
|
The information provided on treatment and care for dementia
|
|
|
|
Bad
|
4 (7.1%)
|
1 (5.0%)
|
0 (0.0%)
|
Reasonable
|
23 (41.1%)
|
8 (40.0%)
|
1 (20.0%)
|
Good
|
26 (46.4%)
|
10 (50.0%)
|
3 (60.0%)
|
Very good
|
3 (5.4%)
|
1 (5.0%)
|
1 (20.0%)
|
The information provided on diagnostic testing for dementia
|
|
|
|
Bad
|
5 (8.9%)
|
2 (10.0%)
|
0 (0.0%)
|
Reasonable
|
12 (21.4%)
|
9 (45.0%)
|
1 (20.0%)
|
Good
|
37 (66.1%)
|
9 (45.0%)
|
2 (40.0%)
|
Very good
|
2 (3.6%)
|
0 (0.0%)
|
1 (20.0%)
|
The information provided on possible implications of diagnostic testing
|
|
|
|
Bad
|
7 (12.7%)
|
1 (5.0%)
|
0 (0.0%)
|
Reasonable
|
12 (21.8%)
|
10 (50.0%)
|
1 (20.0%)
|
Good
|
31 (56.4%)
|
8 (40.0%)
|
3 (60.0%)
|
Very good
|
5 (9.1%)
|
1 (5.0%)
|
1 (20.0%)
|
PtDA bias
|
|
|
|
Slanted towards starting diagnostic testing for dementia
|
7 (13.5%)
|
2 (10.0%)
|
1 (20.0%)
|
Slanted towards refraining from diagnostic testing for dementia
|
1 (1.9%)
|
3 (15.0%)
|
1 (20.0%)
|
Balanced
|
44 (84.6%)
|
15 (75.0%)
|
3 (60.0%)
|
Utility for making decisions on diagnostic testing
|
|
|
|
Helpful
|
39 (75.0%)
|
10 (55.5%)
|
4 (80.0%)
|
Unhelpful
|
13 (25.0%)
|
8 (44.5%)
|
1 (20.0%)
|
Did the PtDA make the decision easier or more difficult?
|
|
|
|
Easier
|
19 (41.3%)
|
5 (25.0%)
|
-
|
More difficult
|
4 (8.7%)
|
4 (20.0%)
|
-
|
I do not know
|
23 (50.0%)
|
9 (45.0%)
|
-
|
The information provided was enough to help people decide about diagnostic testing for dementia
|
|
|
|
Yes
|
37 (74.0%)
|
11 (61.1%)
|
3 (60.0%)
|
No
|
13 (26.0%)
|
7 (38.9%)
|
2 (40.0%)
|
Note. Not all users completed the survey, sample sizes can therefore differ per question. The question on decision difficulty was only asked to people with memory complaints and significant others. |
Adoption
The landing page of the PtDA registered 7229 page views between December 2021 and April 2022. The PtDA was completed by 1980 (27.4%) users within this time period. The number of users dropping out of the PtDA is similar for most steps. However, the number of dropouts in step 4 (What suits you best?) seems relatively high (Appendix E). In the five months after evaluating the PtDA, the landing page registered 3375 page views and the PtDA was completed by 890 users (26.4%).
Of the 20 GPs participating in the S-DeciDeD project, nine indicated to have used the PtDA in their daily work (45%), eight GPs indicated to not have used it (40%), for three GPs their use of the PtDA was unknown. GPs who did not use the PtDA indicated not having encountered patients for which they thought the PtDA would be useful or indicated not having taken the time to familiarize themselves with the PtDA and therefore not using it yet. From the GPs and practice nurses participating in the interviews, six had used the PtDA in their daily work with patients worrying about their memory. Most GPs indicated they had used the PtDA two to three times. The other three participating GPs and practice nurses indicated not having actively used the PtDA during a consultation, but they had placed a link to the PtDA on their website or referred patients to Thuisarts.nl.
Complementary to these varying uptake numbers, analysis of semi-structured interviews with GPs and practice nurses resulted in one theme related to adoption in which attitudes affecting the intention to adopt the PtDA are described (Table 4).
Theme 2: Perceived necessity of discussing patient preferences and need for a PtDA.
GPs and practice nurses who perceived added value in applying SDM and using a PtDA in deciding on diagnostic testing, were more likely to adopt the PtDA in daily practice.
‘I try to use it with everyone because otherwise, you might subjectively assume that they won’t benefit from it. So I offer it to everyone or go through the PtDA together’ (GP, female, age 58)
Intentions to adopt the PtDA also depended on the perceived necessity of discussing patient preferences in the decision-making process on dementia diagnostics. When patients clearly preferred diagnostic testing, some GPs and practice nurses did not feel the need to elaborately discuss this preference or the need to use the PtDA. Moreover, some GPs felt they could elicit their patient preferences already in their usual way of working and therefore did not need a PtDA.
Appropriateness
Three themes related to the appropriateness of the PtDA were generated from the semi-structured interviews with GPs, practice nurses, and online users (Table 4). In addition, online survey item 7 (Appendix B) was used to complement these themes.
Theme 3: Enhancing patient autonomy and preference deliberation.
Most GPs and practice nurses felt using the PtDA would enhance patient autonomy and shared decision-making by fostering greater patient involvement and conscious decision-making on diagnostic testing for dementia.
‘The fact that you are using a patient decision aid already makes you aware that you are jointly engaged in something’ (GP, female, age 58)
Similarly, most people with memory complaints and significant others perceived the PtDA prompted them to consider their preferences, by information on possible options, memory complaints, and symptoms of dementia. For some people with memory complaints, this led to scheduling an appointment with their GP, whereas others found reassurance and did not discuss worries with significant others or a healthcare professional.
‘It has changed my mind somehow. At first, I was like, ‘I won’t do it’ and pushed it a side, but now it’s more like, ‘Well maybe I should think about it after all’ (Online user, person with memory complaints, female, age 75)
The PtDA’s perceived contribution to preference elicitation was partly confirmed in the survey question on users’ preference for diagnostic testing after using the PtDA. More than half of people with memory complaints and significant others indicated that their preference regarding diagnostic testing remained unchanged after using the PtDA (53.7%). The remainder of the people with memory complaints and significant others were either unsure about their preference regarding diagnostic testing (38.9%), indicating their preference had changed towards refraining from diagnostic testing (5.6%), or starting diagnostic testing (1.9%) after using the PtDA.
Theme 4: Appropriateness depends on patient characteristics and needs.
GPs felt the PtDA was not suitable for every patient which withheld them from using the PtDA with certain patients. In particular, the use of the PtDA with patients with limited awareness of their cognitive impairment or with severe memory complaints was not viewed as appropriate. Caregivers, however, were in these cases perceived to benefit from the PtDA. The PtDA was seen as better suited for patients with a clear care request on diagnostic testing or who were preparing ahead for their future. GPs felt using the PtDA was more complex for patients with lower education or literacy levels. Furthermore, GPs felt that older patients (above 80 years of age) and those with multiple health conditions might not benefit from the PtDA due to low priority for dementia diagnostics or limited digital skills. One GP hesitated to use it with insecure patients, fearing it might create more confusion and questions, potentially causing harm.
‘I think education and lower literacy levels definitely play a role in using the patient decision aid. Also, people who are very uncertain or more dependent, I won’t let them do this [the PtDA] themselves. I won’t even go through it with them because as I am reading it myself, I can tell doubts will arise when I present it. It is a part of the patient’s character that you assess’ (GP, female, age 43)
Theme 5: Valued information, but PtDA lacks guidance.
GPs mainly valued that the information in the PtDA supports the information they usually give their patients during consultations. Especially information on the fact that memory complaints are often part of normal aging and the difference in dementia symptoms was perceived as valuable.
‘As a GP you feel supported by such a document because it explains why you do things a certain way and it is described by an external reliable source as Thuisarts.nl’ (GP, female, age 58)
Some GPs found the detailed information on specialized diagnostic testing excessive, which they expected could lead to patients asking less relevant questions. People with memory complaints generally felt the PtDA fulfilled their information needs. It enabled them to reflect on symptoms and was seen as reliable. However, a few people with memory complaints and a significant other felt the information on medicinal treatment was short-sighted or would have liked more practical tips on arranging care.
In both the people with memory complaints and the GPs and practice nurse group, some people indicated they felt the transition to the end was abrupt and lacked guidance. They missed concrete actions on what to do after completing the value clarification questions and some GPs thought the questions would be hard to answer for their patients. Some people with memory complaints felt the questions were redundant as they had considered the issues addressed in the questions beforehand. Moreover, some people with memory complaints started the PtDA thinking it would provide information on the state of their memory. They were disappointed and did not feel the PtDA was of added value in their decision to start diagnostic testing.
‘I simply wanted to know if I should be concerned about my memory and I felt the PtDA did not provide me with further assistance in that regard’ (online user, person with memory complaints, male, age 69)
Feasibility
Two themes related to the PtDA’s feasibility were generated from the semi-structured interviews with GPs and practice nurses (Table 4).
Theme 6: Time and experience with shared decision-making and/or the PtDA facilitate its use.
GPs often felt they needed extra time to use the PtDA with their patients. In some general practices, it was standard practice to schedule two consultations to discuss memory complaints in which there was also time to discuss the PtDA, while others could not accommodate this. Moreover, GPs or practice nurses who already felt they involved patients in discussing diagnostic testing indicated they could easily incorporate the PtDA in their usual way of working, whereas GPs who were used to being more directive felt they had to adjust. The PtDA was often viewed as an additional tool they could use when needed, not altering their daily practice.
Most GPs felt they needed more time or practice to get acquainted with using the PtDA. In this regard, some GPs indicated to have little time in their working schedule to properly get acquainted or felt an additional training would be desirable.
‘It is very frustrating, I do find it important but in the rush of daily practice, I don’t find the time to apply it with a patient’ (GP, female, age 64)
Theme 7: Diverse approaches to PtDA use in daily practice.
Most GPs referred patients to the PtDA after discussing diagnostic testing during a consultation. Patients were instructed to use the PtDA at home, after which some GPs actively scheduled a follow-up consultation whereas others did not. Few GPs used the PtDA during the consultation itself. One practice informed patients about the PtDA when making appointments for memory complaints.
Some GPs and practice nurses used the PtDA before initiating diagnostic testing, while others used it primarily when deciding on referral. One GP referred patients to the PtDA after deciding on testing, allowing patients to review additional information. Most GPs used the PtDA to inform patients and understand their preferences, mainly when unsure about the cause of the memory complaints and felt the course of action was dependent upon the patient’s preferences.
‘I use it to help patients and their significant others understand their options, especially when I sense they are a little uncertain about the best path to take’ (practice nurse, female, age 45)
Table 4
Themes, categories, and codes per implementation outcome
Acceptability
|
Themes
|
Categories
|
Codes
|
1. PtDA is perceived as user-friendly and well-structured
|
Perceived user-friendliness (online users)
|
Start PtDA confusing
Understandable information/language
Good structure and layout
Easy to use without health care professional
|
|
Perceived suitably for older patients (GPs)
|
Clear and balanced information
|
|
|
Lay language
|
|
|
Well structured
|
|
|
Suited for older people with memory complaints and caregivers
|
Adoption
|
2. Perceived necessity of discussing patient preferences and need for SDM
|
Attitudes towards SDM (GPs)
|
Positive intention towards SDM and using PtDA
Intention to try PtDA with every patient
|
|
Need to discuss patient preferences (GPs)
|
Most patients prefer diagnostic testing, discussion on diagnostic testing not needed
|
|
|
Patient involvement is already assured, PtDA not needed
|
Appropriateness
|
3. Enhancing patient autonomy and preference deliberation
|
The way the PtDA facilitates SDM (GPs)
|
Contributes to patient autonomy and ability for informed decision-making
|
|
|
Manages expectations for diagnostic testing
|
|
|
Sets the stage for shared decision-making
|
|
|
Creates safe space to discuss worries
|
|
Extent to which PtDA contributes to decision-making (online users)
|
Little new information
Makes user think
Contributes to deciding on diagnostic testing
Reassured on symptoms and refraining from discussing worries with significant others or health care professionals
Attitude towards diagnostic testing confirmed
Scheduled consultation with GP
|
4. Appropriateness depends on patient characteristics and needs
|
Facilitators to PtDA applicability (GPs)
|
Suitable for patients with a clear care request on diagnostic testing and openness to discuss
Suitable for caregivers
Suitable for patients who are preparing ahead for their future
Suitable for patients who are capable to reflect on questions PtDA
|
|
Barriers to PtDA applicability (GPs)
|
Not suitable for patients with a low education and literacy level
|
|
|
Not suitable for patients with multimorbidity
|
|
|
Not suitable for patients above 90 years old with low digital skills
|
|
|
Not suitable for insecure patients
|
|
|
Not suitable in case of severe memory complaints or limited awareness of memory complaints
|
5. Valued information, but lacks guidance
|
Information satisfaction and needs (online users, GPs)
|
Information on normal aging and dementia symptoms valued
|
|
|
Information supports GPs’ story
|
|
|
Too detailed information on specialized diagnostic testing
|
|
|
Reliable and unbiased information valuable
|
|
|
Information on symptoms causes recognition
|
|
|
Information on treatment short sighted
|
|
|
Practical tips on arranging care is missing
|
|
|
Information meets information needs
|
|
|
Provides no indication of memory status
|
|
Lack of guidance at the end of the PtDA (online users, GPs)
|
Statements hard to answer
Lots of text relative to preference questions
Unsatisfying ending PtDA
Concrete actions after using PtDA missing
Statements do not match experiences user
|
Feasibility
|
6. Time and experience with shared decision-making and/or the PtDA facilitates its’ use
|
Infrastructure general practice (GPs)
|
Too little time to use PtDA during consultation or to schedule extra consultation
Opportunity to schedule extra consultations to discuss PtDA
Extent to which SDM/using a PtDA fits with usual care/decision making procedure
|
|
Adapting to a new working method (GPs)
|
Not used to using the PtDA yet
|
|
|
Little time to introduce new working methods
|
|
|
Training/instruction desirable
|
|
|
Additional tool when needed, does not change way of working
|
7. Diverse approaches to PtDA use in daily practice
|
Way of using PtDA (GPs)
|
Patient uses PtDA at home as homework from the GP
Patient and GP use PtDA together during consultation
Practice assistant names PtDA when patient calls to schedule appointment
|
|
Moment of using the PtDA (GPs)
|
In discussing to schedule an MMSE test
|
|
|
In discussing referral for specialized diagnostic testing
|
|
|
After deciding on diagnostic testing, patient uses PtDA afterwards at home
|
|
Goals of using the PtDa (GPs)
|
To open up discussion on memory complaints
|
|
|
To make considerations regarding diagnostic testing explicit
|
|
|
To inform patient about options
|
|
|
To help patient decide when patient is in doubt on diagnostic testing
|
Note. Online users = Data derived from semi-structured interviews with online users, GPs = Data derived from semi-structured interviews with general practitioners and practice nurses. Codes from online users are printed in italics in categories in which codes from interviews with online users and GPs are categorized. |