Introduction
Methods
KLIK workflow
Design
Participants
Procedure
Focus groups
Questionnaire
Analyses
Results
Participants
Patients | Focus groups | Questionnaire | ||||
---|---|---|---|---|---|---|
N | M | Range | N | M | Range | |
KLIK user since (years) | 8 | 3.2 | 1.1–6.1 | 31 | 5.2 | 1.0–8.2 |
Age | 8 | 15.3 | 13.1–18.8 | 31 | 15.7 | 12.4–19.2 |
% | % | |||||
---|---|---|---|---|---|---|
Gender (female) | 6 | 75.0 | 15 | 48.4 | ||
Chronic health condition | ||||||
Juvenile idiopathic arthritis | 2 | 25.0 | 7 | 22.6 | ||
Cystic Fibrosis | 2 | 25.0 | 1 | 3.2 | ||
Cancer | 2 | 25.0 | 0 | 0 | ||
Gastrointestinal diseases | 1 | 12.5 | 4 | 12.9 | ||
Home parenteral nutrition | 1 | 12.5 | 0 | 0 | ||
Sickle cell disease | 0 | 0 | 4 | 12.9 | ||
Other* | 0 | 0 | 15 | 48.4 |
Parents | N | M | Range | N | M | Range |
---|---|---|---|---|---|---|
KLIK user since (years) | 17 | 2.8 | 0.8–6.1 | 130 | 3.2 | 0.3–8.1 |
Age (of child in KLIK) | 17 | 10.4 | 2.1–16.9 | 130 | 9.3 | 0.9–19.1 |
% | % | |||||
---|---|---|---|---|---|---|
Chronic health condition (child) | ||||||
Cancer | 6 | 35.3 | 0 | 0 | ||
Juvenile idiopathic arthritis | 2 | 11.8 | 13 | 10.0 | ||
Hemophilia | 2 | 11.7 | 4 | 3.1 | ||
Home parenteral nutrition | 2 | 11.7 | 3 | 2.3 | ||
Gastrointestinal diseases | 1 | 5.9 | 20 | 15.4 | ||
Neonatology follow up | 0 | 0 | 28 | 21.5 | ||
Other* | 4 | 23.5 | 62 | 47.7 |
Focus groups
Themes | Positive experiences | Points of improvement |
---|---|---|
Content of PROMs | ‘The questions are clear, recognizable and easy to answer’ | ‘There is a lot of repetition in questions’ |
‘All topics are covered in the questionnaires, not only topics about your disease’ | ‘The questions are not relevant for every patient and sometimes questions are difficult to understand’ | |
‘It would be good if questions were administered based on previous answers’ | ||
Completion time PROMs | ‘Completing the questionnaires does not take too much time’ | ‘Completing the questionnaires takes a lot of time’ |
Layout | ‘The KLIK website looks nice with the colors that are used’ | |
‘Nice that you can see a picture of your doctor’ | ||
Discussion by clinician | ‘The answers in the KLIK ePROfile are discussed by the clinician’ | ‘The clinician often does not discuss the KLIK ePROfile’ |
‘Sometimes the clinician does not ask more questions based on my answers’ | ||
Insight patients’ functioning | ‘By completing the questionnaires you see how you are doing’ | |
‘It is good that parents know what is going on’ | ||
‘With KLIK, clinicians know how you are doing’ | ||
Conversation content | ‘With KLIK, not only physical health, but also mental health is discussed’ ‘It helps in discussing topics that you would otherwise not think about’ | |
Preparation of consultation | ‘Completing the questions before the appointment helps you to come up with topics you want to discuss during the consultation’ | ‘Completing KLIK questionnaires does not help you in preparing for the consultation, it is just something you need to do’ |
Motivation child | ‘I think it is not always necessary to complete the KLIK questionnaires’ | |
‘I sometimes just do not want to talk about the KLIK topics’ | ||
Consultation efficiency | ‘The consultation is more efficient when KLIK is used, as the doctor immediately has an overview of how you are doing’ | |
Anonimity and security | ‘It is good that KLIK is well secured’ | |
‘As KLIK PROMs are completed on the computer, it feels more anonymous, which results in completing the PROMs more honestly’ | ||
Ease of use | ‘It is nice that the KLIK questionnaires can be completed on the computer at home’ | ‘You cannot go back to the questionnaire if you completed all questions’ |
Themes | Positive experiences | Points of improvement |
---|---|---|
Content of PROMs | ‘The questions are easy to understand for children’ | ‘The questions are sometimes not relevant and confronting for children’ |
‘All important topics are covered in the questionnaires’ | ‘It is annoying that every time the same questions are asked’ | |
‘There is no attention for brothers, sisters and the family situation’ | ||
‘The questions are difficult to understand for young children. I would suggest to make the questions more visual’ | ||
Ease of use | ‘KLIK is easy to use and it is nice that you can complete questionnaires online’ | ‘KLIK should be connected with the EHRs, so appointments are automatically linked’ |
‘I like the reminder e-mails that are sent by KLIK’ | ‘I would like KLIK to be available as an app’ | |
Insight patients’ functioning | ‘It is nice that parents have insight into the functioning of their child over time’ | |
‘With KLIK the clinician knows what is going on and can follow the child over time’ | ||
Discussion by clinician | ‘The clinician takes KLIK seriously and always discusses the answers’ | ‘The KLIK questionnaires are often not discussed by the clinician’ |
‘Especially questionnaires about the functioning of parents are not discussed’ | ||
Conversation content | ‘KLIK is a conversation tool and provides structure and more depth to the conversation’ | ‘Our consultation has already a fixed structure, so KLIK does not help with that’ |
‘It is nice that with KLIK psychosocial functioning is also taken into account’ | ||
Preparation of consultation | ‘KLIK helps to start a conversation with your child or partner about the situation before the consultation’ | |
‘KLIK helps to think about how it is going and to prepare questions before the consultation’ | ||
Layout | ‘The KLIK website is attractive and looks nice for children’ | ‘It would be good if smileys were used to make KLIK more attractive’ |
‘The layout of KLIK is clear and understandable’ | ||
Completion time PROMs | ‘The completion time is manageable and not too long’ | ‘Too many questions have to be completed’ |
‘Before I start completing the questionnaires I would like to see how much time it will take’ | ||
Detecting problems | ‘With KLIK problems are detected early and your child can be referred for help’ | |
Value and goal | ‘I like that with KLIK there is the possibility to report difficulties’ | ‘Completing KLIK questionnaires feels not useful when it is going well’ |
‘It is not totally clear what is done with your answers and if they can be used against you by the government’ |
Patients
Parents
Questionnaire
Overall satisfaction with the KLIK PROM portal
Completion of PROMs in the KLIK PROM portal
Agree–N (%) | Neutral–N (%) | Disagree–N (%) | |||
---|---|---|---|---|---|
I know why I am being asked to complete KLIK PROMs | Patients | 24 (78) | 1 (3) | 6 (19) | |
Parents | 109 (84) | 13 (10) | 8 (6) | ||
4 times a year–N (%) | 2 times a year–N (%) | Yearly–N (%) | Other–N (%) | ||
How often are you asked to complete the PROMs in KLIK? | Patients | 7 (22) | 12 (39) | 8 (26) | 4 (13) |
Parents | 21 (16) | 29 (22) | 38 (30) | 42 (32) | |
Yes–N (%) | No, too often–N (%) | No, too infrequent–N (%) | |||
Are you satisfied with this frequency? | Patients | 29 (94) | 1 (3) | 1 (3) | |
Parents | 111 (85) | 11 (9) | 8 (6) | ||
(Almost) always–N (%) | Sometimes–N (%) | (Almost) never–N (%) | |||
When you are asked to complete the PROMs in KLIK, how often do you do this?how often do you do this? | Patients | 28 (90) | 3 (10) | – | |
Parents | 123 (95) | 2 (1) | 5 (4) | ||
M (range) | |||||
I spend on average.. minutes on completing the KLIK PROMs | Patients | 13.8 (5–30) | |||
Parents | 15.2 (0–60) | ||||
Yes–N (%) | No, too long–N (%) | No, too short–N (%) | |||
Are you satisfied with the completion time? | Patients | 25 (81) | 6 (19) | – | |
Parents | 109 (84) | 20 (15) | 1 (1) |
Discussing PROMs with the clinician
Influence of KLIK on the (preparation of the) consultation
Examples | |
---|---|
Advantages KLIK PROM portal | |
Easy to use | ‘Simple and clear’ ‘It is easy that you can complete questionnaires online at home’ |
Clinician is better prepared | ‘The clinician can see my questions before the appointment at the outpatient clinic’ ‘The clinician is already aware of my child's health situation and can immediately respond to it’ |
Patient and parents are better prepared | ‘It is valuable that you can ask the clinician questions in advance so that you do not forget them’ ‘Subjects are discussed which you normally do not bring up yourself’ |
Insight into functioning (of my child) | ‘KLIK provides insight into how I am doing’ ‘Provides the opportunity to compare the health situation of my child now with the situation just after diagnosis’ |
Disadvantages KLIK PROM portal | |
Not easy to use | ‘I keep forgetting my password’ ‘Annoying that I get multiple reminders’ |
Irrelevant content of PROMs | ‘Not all questions apply to our situation’ ‘It is boring to complete the same questionnaires every time’ |
Takes time | ‘Completing the questionnaires takes sometimes more time than I hope’ ‘It is a lot of work to complete the questionnaires’ |