Keywords
venous thromboembolism - patient-reported outcome measures - patient-centered care
- patient outcome assessment - implementation science
Introduction
After experiencing deep vein thrombosis (DVT) or acute pulmonary embolism (PE), patients
may encounter a wide spectrum of health effects and long-term consequences.[1]
[2]
[3]
[4]
[5]
[6]
[7]
[8] Venous thromboembolism (VTE) and its sequelae may affect both physical and psychosocial
functioning, considerably limiting patients' ability to work, psychological well-being,
and quality of life.[9]
[10]
[11]
[12]
[13]
[14]
[15]
[16]
[17] Assessment of patient-centered outcomes may therefore contribute to a better understanding
of the impact of the venous thromboembolic event on individual patients, help guide
the agenda for the consultation, and tailor management decisions to the patient's
needs and values. Such outcomes can be measured using patient-reported outcome measures
(PROMs). PROMs are standardized questionnaires that are completed by patients, to
assess their symptom burden, perceived health status, and well-being, capturing outcomes
of care and the impact of disease from the patient's perspective.[18]
[19]
[20] Routine use of PROMs could empower patients to make informed healthcare decisions.[18]
[21] Moreover, complementing traditionally measured clinical outcomes with patient-reported
outcomes is an important step toward patient-centered health care.[22]
To facilitate the use of patient-centered outcomes in daily clinical practice, the
multidisciplinary ICHOM-VTE project (International Consortium for Health Outcomes
Measurement project for VTE) established a standardized set of patient-relevant outcome
measures for patients with VTE.[23] During a modified Delphi process, an international working group consisting of VTE
experts as well as patient representatives selected the outcomes that were considered
to matter most to patients. This set of outcomes along with recommended outcome measures,
including PROMs, resulted from a thorough process of development with the engagement
of patient representatives and was designed to apply to all patients diagnosed with
VTE aged 16 years and older. The PROMs that are part of this core set of outcomes
have been embedded in routine care at the thrombosis outpatient clinic of the Leiden
University Medical Center (LUMC; the Netherlands). Important lessons can be learned
from the implementation process and the first experiences of patients and healthcare
professionals. The aim of this study was to assess the feasibility of PROMs completion
and experiences with the routine use of PROMs for VTE patients treated in our center.
Methods
Setting
PROMs for adult VTE patients have been incorporated into our routine patient pathway
since March 2023. During the implementation phase, PROMs based on the outcome measures
that were selected during the ICHOM-VTE project ([Table 1]) were implemented using a digital application (Brightfish), which is integrated
into the electronic health records system.[23] With the use of this digital tool, an invitation link is sent to the patient by
email ahead of the scheduled appointment at the outpatient clinic. The link leads
the patient to an online page where the questionnaires can be completed. This allows
the patients to fill out the PROMs at home before their visit to the outpatient clinic.
All patients who experienced VTE and had a scheduled first appointment at the thrombosis
outpatient clinic were sent an invitation link to complete PROMs.
Table 1
Patient-centered outcomes with patient-reported outcome measures, which are part of
the ICHOM-VTE standardized set of outcomes
|
Patient-centered outcome
|
Patient-reported outcome measure
|
|
Quality of life
|
PROMIS Scale v1.2—Global Health
PEmb-QoL questionnaire
VEINES-QOL questionnaire
|
|
Functional limitations (including ability to work)
|
Post-VTE Functional Status Scale
|
|
Pain (including symptom severity)
|
PROMIS Short Form v2.0—Pain Intensity—3a
|
|
Dyspnea (including symptom severity)
|
PROMIS Short Form v1.0—Dyspnea Severity—10a
|
|
Psychosocial wellbeing
|
Patient Health Questionnaire (PHQ-9)
Generalized Anxiety Disorder (GAD-7)
|
|
Satisfaction with treatment
|
Single question: “Are you satisfied with your VTE treatment?”
If required: Anti-Clot Treatment Scale (ACTS)
|
|
Changes in life view
|
Single question: “Have you experienced a change in your expectations, aspirations,
values, or perspectives on life opportunities since the diagnosis of VTE?”
|
Abbreviations: ICHOM, International Consortium for Health Outcomes Measurement; VTE,
venous thromboembolism.
Note: The complete ICHOM set of patient-centered outcome measures for venous thromboembolism
is available via https://www.ichom.org/.23
PROM results are immediately visible in a dashboard within the electronic medical
records facilitated by the embedded digital tool, displaying the results in an intuitive
way ([Fig. 1]). Healthcare professionals can access the dashboard to review the completed questionnaires
and graphical display of PROM results, which helps to interpret the responses and
visualizing the course of PROM results when multiple measurements become available
during follow-up. The PROM results can be used to optimally prepare for the patient
appointment, as well as to guide the conversation with the patient during the consultation.
Fig. 1 PROMs dashboard in the electronic medical records. Example of the dashboard in the
electronic medical records (in the Dutch language), showing the summary of PROM results
per questionnaire (above in the figure) along with a graphical display (below in the
figure). The answers to each of the questions of the completed questionnaires can
also be reviewed in the dashboard. Note: in our center, the PROMIS short form “Physical
Function” (left in the figure) and short form “Ability to Participate in Social Roles
and Activities” (right in the figure) were implemented, which contain additional questions
about physical health and social activities and roles compared to the PROMIS short
form “Global Health” to delve deeper into these domains. PROMs: patient-reported outcome
measures.
The first invitation to complete PROMs is sent out to patients 1 week before the first
follow-up contact, which is scheduled around 7 to 10 days following the VTE diagnosis
according to the local patient pathway. Following the first measurement time point
(T0), the PROMs are scheduled by the digital tool at fixed time points: patients receive
invitations after 3 months (T1), after 6 months (T2), at 1-year follow-up (T3) and
then yearly up to 3 years after the VTE diagnosis, for as long as the patient is under
care. For the first time point (T0), the questionnaires could be answered 1 week before
the first visit until 1 week after the visit. From the second time point (T1) onward,
a 2-week window around the measurement time point was applied for the questionnaires
to be open.
Design
The objective of this study was to evaluate the feasibility of the completion and
application of PROMs and experiences with the use of PROMs in routine care for patients
with VTE visiting our outpatient clinic. We aimed to assess the experiences of both
patients and involved healthcare professionals. Evaluation of the scores and results
of the PROMs was not within the scope of the current study.
A mixed-methods study was performed utilizing both quantitative and qualitative data.
Quantitative data were obtained from statistics recorded by the digital PROMs tool,
from 5-point Likert scale questions applied in semi-structured interviews with patients
and healthcare professionals, and from the NoMAD (normalization measure development)
questionnaire completed by healthcare professionals.[24]
[25] Qualitative data were obtained from semi-structured interviews with patients and
healthcare professionals. The Institutional Review Board of the LUMC approved the
study (protocol 132775).
Participants
Patients aged 18 years and older who were diagnosed with acute PE and/or DVT of the
lower or upper extremity and received follow-up for at least 3 months at the outpatient
clinic were identified in September 2023 based on scheduled appointments. Patients
who completed PROMs at the first two time points (around 7 to 10 days after VTE diagnosis
[T0] and after 3 months [T1]) were asked to participate in a semi-structured interview,
as well as patients who were invited but did not complete PROMs at both follow-up
time points. Patients were asked for consent to the use of demographic and clinical
data from the electronic medical records for the purpose of this evaluation study.
A convenience cohort of four healthcare professionals in various roles (nurse, resident
internal medicine, fellow vascular medicine, and internist specialized in vascular
medicine) who worked with PROM results at the outpatient clinic were interviewed about
their experience with the use of PROMs. The same healthcare professionals were asked
to complete the NoMAD questionnaire to assess the implementation process from their
perspective.
Data Collection
Semi-structured interviews were conducted by one researcher (CdJ) in the Dutch language.
Questions were asked in a fixed order, according to an interview guide that was prepared
for this evaluation study ([Table 2]). Patients who had completed PROMs were interviewed on their experiences with the
PROMs in practice, including their experiences with the completion of the questionnaires
and their experiences during the outpatient clinic visit. Patients who had not completed
PROMs after invitations at the two-time points were interviewed about their experiences
around the PROMs and during their outpatient clinic visit too. There was no established
relationship between the interviewer and the patients prior to the start of the interview.
Demographic and clinical data were collected from the electronic medical records.
Healthcare professionals were interviewed on their experiences with the use of PROMs
in preparation for the patient appointment and during the appointment, and their perception
of the value of the use of PROMs at the outpatient clinic. Field notes were made during
all interviews.
Table 2
Guide for structured interviews with patients who completed PROMs, patients who did
not complete PROMs, and professionals who worked with PROM results
|
Patients who completed PROMs
|
1. What is your experience with filling out the questionnaires? On a scale of 1 to
5 (1 negative, 5 positive)?
|
|
2. How much time did you need to complete the questionnaires?
|
|
3. The number of questions was a. too few, b. too many, c. just right
|
|
4. The next three questions are about the questionnaires
1. Were any questions unclear?
2. Did you encounter questions that were not relevant to you?
3. Did you miss any questions?
|
|
5. Did the care provider follow up on the responses you provided in the questionnaires?
If so, how did you notice this? Do you feel that this contributed to your treatment?
On a scale of 1 to 5 (1 none, 5 significantly)?
If not, did you initiate a conversation about the questionnaires yourself?
|
|
6. Did you experience that attention was paid to the symptoms and/or issues you wanted
to discuss during the appointment?
If not, did you initiate a conversation about the symptoms and/or issues you wanted
to discuss during the appointment yourself?
|
|
7. Did you feel prepared for the appointment after completing the questionnaires?
On a scale of 1 to 5 (1 not at all, 5 very well prepared)?
|
|
8. Do you have any suggestions for improvement?
|
|
Patients who did not complete PROMs
|
1. Did you start filling out the questionnaires, or were you unable to start the questionnaires?
|
|
2. What caused you not to complete the questionnaires?
|
|
3. What would have prompted you to fill out the questionnaires?
|
|
4. Did you experience that attention was paid to the symptoms and/or issues you wanted
to discuss during the appointment?
If not, did you initiate a conversation about the symptoms and/or issues you wanted
to discuss during the appointment yourself?
|
|
5. Did you feel prepared for the appointment? On a scale of 1 to 5 (1 not at all,
5 very well prepared)?
|
|
Professionals
|
1. How many patients at your outpatient clinic have completed PROMs?
|
|
2. What is your experience with the use of PROMs? On a scale of 1 to 5 (1 negative,
5 positive)?
|
|
3. Did you use PROMs during preparation for the patient appointment and/or during
the appointment?
If so, how did you use the PROMs? Do you feel that this was of added value, and if
so, in what way? Did you make a note in the medical records? What is your experience
with the interpretation of PROM responses?
|
|
4. What is your perception of the value of the use of PROMs at the outpatient clinic?
And specifically, during the preparation for the patient appointment, and during the
appointment? On a scale of 1 to 5 (1 none, 5 significant added value)?
|
|
5. What could be improved about the PROMs, implementation, and/or use in practice?
|
Abbreviations: PROMs, patient-reported outcome measures.
In addition, to assess the implementation process from the perspective of involved
healthcare professionals, the NoMAD questionnaire was used. This instrument was developed
based on the normalization process theory (NPT) which explains the normalization of
changes (a new intervention becoming part of normal practice) and was validated for
the assessment of staff perceptions of implementation processes.[24]
[25] Four constructs proposed by the NPT are measured with the NoMAD instrument: coherence,
cognitive participation, collective action, and reflexive monitoring.[25]
[26] In the current study, the Dutch translation of the NoMAD questionnaire was used.[27]
Data Analysis
Demographic variables of patients who were interviewed, completion rate, and quantitative
data obtained with the interviews and NoMAD questionnaire were analyzed using descriptive
statistics. The interviews were thematically analyzed. Themes were derived and identified
from the data, and were described along with illustrative examples. All analyzes were
performed using SPSS version 29.
Results
Completion Rate
From March to September 2023, 27 patients who had received follow-up for at least
3 months at the outpatient clinic (as identified per September 2023) received invitations
to complete PROMs at the first (T0; 7 to 10 days after VTE diagnosis) and second-time
point (T1; after 3 months). In response to the T0 invitation, PROMs were completed
by 13/27 (48%) patients. At T1, 11 (41%) patients had completed the PROMs. PROMs were
fully completed at both time points by five patients.
Patients
Five consecutive patients who had completed PROMs at both time points were interviewed.
Three patients who had not completed PROMs at any time point were interviewed as well.
The eight interviewed patients (50% female) had a median age of 57 years. Five had
been diagnosed with acute PE while three had experienced acute DVT (of the five patients
who completed PROMs, four had experienced acute PE and one acute DVT; [Table 3]).
Table 3
Characteristics of the patients who completed PROMs and the patients who did not complete
PROMs
|
Characteristics
|
Patients who completed PROMs (n = 5)
|
Patients who did not complete PROMs (n = 3)
|
|
Female (n, %)
|
2 (40)
|
2 (67)
|
|
Age, in y (median, range)
|
54 (34–75)
|
59 (48–84)
|
|
Venous thromboembolic event (n, %)
|
|
|
|
–Acute pulmonary embolism
|
4 (80)
|
1 (33)
|
|
–Acute deep vein thrombosis
|
1 (20)
|
2 (67)
|
Abbreviations: PROMs, patient-reported outcome measures.
Experiences of Patients with Completing PROMs
Patients who did complete PROMs at the T0 and T1 time points were asked about their
experience with completion of the PROMs on a scale from 1 “negative” to 5 “positive”,
and were neutral to positive (range: 3.0–4.5; two expressed 3.0 referring to neutral).
A summary of the patients' experiences with the PROMs, illustrated with examples,
is provided in [Table 4]. Three of the five patients felt that all questions were clear, of whom one stated
that the questions were “understandable for everyone”. However, one patient felt that
questions were confusing and found it difficult to determine whether symptoms were
due to the thrombosis or comorbidities. Four out of five patients expressed that the
number of questions was too high; one patient stated not to remember the length of
the questionnaires.
Table 4
Experiences with PROMs shared by patients who completed PROMs and professionals who
worked with PROMs at the outpatient clinic
|
Theme
|
Shared experience
|
|
Patients' experiences
|
|
|
Completion of the PROMs
|
–User-friendly
–Filing out the questions via email works well
–Questionnaires are very lengthy
–A lot of similar or nearly identical questions, but phrased slightly differently
–Neutral; no negative feeling, nor the feeling it helped me significantly
|
|
Relevance of the questions
|
–The questions also reveal things I would not have thought of
–Some questions cause unease that I did not experience before, for instance, the question
“were you afraid of being alone?”
–Not all questions align with my perspective
–There were questions that had nothing to do with the symptoms I experienced; I answered
questions that had nothing to do with the veins/embolism
–It felt like the questionnaires were designed for a senior individual, questions
did not cover my daily activities
|
|
Purpose of the PROMs
|
–Makes you wonder why you are filling this out
–In my view, these questions provide information, allowing the expert to learn more
about the patient
–It was confusing for me because I was in a whole process (due to other diseases),
and it was not clear to me that the questionnaires were from the thrombosis outpatient
clinic
|
|
Communication between patient and care provider, from the patient's perspective
|
|
|
Follow up on responses to the questionnaires during the appointment
|
All five patients had experienced that the care provider did not follow up on the
responses to the questionnaires during the appointment, but also none of them initiated
a conversation about the questionnaires themselves; three patients did not feel the
need to do so, and one patient did not know that the doctor was aware of the questionnaires.
|
|
Attention to symptoms and/or issues
|
–Pleasant experience, everything was discussed without me having to initiate anything
–I was able to discuss everything
–What was discussed during the appointment aligned well with what I wanted to know,
I looked up things on the internet and could ask questions about that
–Positive feeling with the doctor, who knew what was going on, it was a pleasant interaction
–No, but I did not feel the need to start discussing other relevant matters, although
there was room to do so
|
|
Preparation of the patient for the appointment
|
|
|
Better prepared after completion of the PROMs
|
–I gained insights from some of the questions, there were questions where I thought
“could that also be related,” or where I wanted to ask about during the appointment
–Subconsciously, yes, something in the back of your mind
|
|
Not better prepared after completion of the PROMs
|
–I felt prepared regardless of the questionnaires
–No, the questionnaires were more of an afterward realization, with no preparation
or introduction for the conversation
–No, but I did not feel the need to prepare for anything
|
|
Professionals' experiences
|
|
|
Impression of the patient's well-being
|
–PROMs provide valuable insights, focusing on physical and social aspects, which help
understand the patient's condition; I find the responses entrusted to be very useful
–The PROMs are useful; you can read what is going on with the patient, the most helpful
aspect is “questions for the doctor?”
–During preparation for the consultation, I truly get an impression of how the patient
is doing based on the PROMs
|
|
Direction of the conversation
|
–The PROMs provide insights that could guide the conversation
–You can ask the patient to tell more about a specific topic
|
|
Value of use of PROMs
|
–PROMs allow to better help patients, to pay more attention to what is important to
them
–Based on the completed questionnaires, issues or complaints can be identified
–PROMs help to not overlook something; something could become apparent when seeing
the answers to the PROMs
–You can measure the course over time in an objective manner; which is useful to evaluate
if patients still have symptoms; this could be used to consider rehabilitation
–You can come back to specific things from the questionnaire
–The patient has thought about his/her health; this enhances efficiency
–Health outcomes as experienced by the patient are neatly recorded
–By asking more specific questions, I could save time
–It would take a lot of time if every patient at the outpatient clinic would have
filled out the PROMs
|
|
Application of the PROMs by professionals
|
|
|
Preparation of the appointment
|
All four professionals used the PROMs during their preparation of the consultation.
–Very useful
–Looking at the results, at the colors, could help formulate questions
–Interesting to look into the PROMs
|
|
During the appointment
|
Three professionals used the PROMs during the appointment.
–During the appointment, the PROMs can be used as a tool to steer the conversation
–Asking the patient, for example, to explore certain topics
–Especially valuable at 3 months; then the PROMs provide insight into the course over
time
–Showing graphs (in the dashboard) to the patient, and using this as an entry point
|
|
Note in the medical records
|
–The responses to PROMs are implicitly part of my documentation
–I made a summary and noted scores that I easily recognized
–I documented the interpreted results, not the exact scores of the questionnaires
–I interpreted the PROMs and made a note of that
|
|
Interpretation of the PROM responses
|
–Interpretation of the PROMs in the dashboard is good, the scores and colors are clear
–Very straightforward
–The overview works well, is functional, practical
–The layout is a bit cluttered
–The course over time is nicely visible
–I opened the questionnaires to look into the questions in detail
–It would be helpful to have (a range of) normal values displayed in addition to the
colors
–Sometimes unclear to what extent a patient is affected socially or physically
|
Abbreviations: PROMs, patient-reported outcome measures.
Note: Examples are based on responses from the patients and professionals.
Preparation for the Outpatient Clinic Visit
Two patients indicated that completion of the PROMs added to the feeling of being
prepared for the visit; one of them described that some questions made her think about
her situation and what she wanted to ask about. Of the other patients, two did not
feel prepared for the outpatient clinic visit despite completing the questionnaires,
and one felt prepared regardless of the PROMs. On a scale from 1 “not at all prepared”
to 5 “very well prepared”, two patients felt not prepared at all, one patient expressed
a neutral stance, and one patient felt very well prepared (range: 1.0–5.0).
The three patients who did not complete PROMs reported feeling neutral to very well
prepared for the outpatient clinic visit (range: 3.0–5.0).
Experiences of Healthcare Professionals
The professionals reported that they had worked with PROM results in 2 to 15 patients
who had completed the PROMs. On a scale from 1 “negative” to 5 “positive”, their experience
with the use of PROMs was predominantly positive (range: 3.0–4.0; one expressed 3.0).
They considerably valued the use of PROMs (range: 4.0–5.0; two expressed 5.0) and
perceived additional value of PROMs both during the preparation for the patient appointment
and during the appointment. The professionals' experiences with the PROMs are summarised
in [Table 4].
Communication Between Patient and Healthcare Professional
All five patients answered that the care provider did not follow up on all the responses
to the questionnaires during the appointment, and one patient had been asked by the
care provider if the PROMs had been received well. Despite this, four of the five
patients felt that attention was paid to the symptoms and/or issues they wanted to
discuss.
Two of the three patients who did not complete PROMs felt that attention was paid
to the symptoms and/or issues they wanted to discuss during the appointment.
Reasons to Not Complete PROMs
Of the patients who did not complete PROMs, one began filling out PROMs but paused
during the questionnaires, and was unable to go back to continue with the remaining
questions due to technical issues. For one patient, it was not clear how to answer
the questionnaires. The third patient stated that she did not fill out PROMs because
she did not feel the need to do so, as this was optional. Healthcare professionals
noted that, in addition to patients who did not complete PROMs, some patients at the
outpatient clinic had not received the invitations because they had not followed the
complete care pathway, for instance when patients were referred from another hospital
not directly after the VTE diagnosis.
NoMAD Questionnaire
[Fig. 2] shows the responses to the NoMAD questionnaire, assessing the implementation process
from the professionals' perspective. All four healthcare professionals strongly agreed
with the potential value of the use of PROMs at the outpatient clinic and valued the
effects that the use of PROMs had on their work. Also, they all stated to continue
to support the use of PROMs, and all strongly believed that feedback about the use
of PROMs can be used to improve its application in the future. They believed that
key individuals play a crucial role in driving the use of PROMs and engaging others,
and also considered participation in the use of PROMs as part of their own responsibilities
(questions: 4–6, 8, and 18, 19).
Fig. 2 Frequency distribution of responses to the NoMAD questionnaire assessing the implementation
process from the healthcare professional's perspective. The bars show the percentages
of healthcare professionals reporting “strongly disagree”, “disagree”, “neutral”,
“agree”, or “strongly agree” to each of the questions. Constructs: questions 1 to
4: coherence, questions 5 to 8: cognitive participation, questions 9 to 15: collective
action, and questions 16 to 20: reflexive monitoring. NoMAD: normalization measure
development, PROMs: patient-reported outcome measures.
Healthcare professionals expressed positive views regarding the integration of the
PROMs into their work and felt that they could adapt their approach to using PROMs
(questions: 9 and 20).
There was unanimous disagreement with the statement that the use of PROMs disrupts
working relationships (question: 10).
Not all agreed that sufficient resources are available to support the use of PROMs
and one of the healthcare professionals felt unaware of reports about the effects
of the use of PROMs (questions: 14 and 16).
Furthermore, some healthcare professionals took a neutral stance on whether the training
provided is sufficient to enable staff to use PROMs, whether management adequately
supports the use of PROMs, and whether there is a shared understanding among staff
regarding the purpose of PROMs (questions: 2, 13, and 15).
Suggestions for Improvement
Patients and professionals were asked how the (use of) PROMs could be improved. Suggestions
were shared to enhance the PROM completion rate and improve accessibility ([Table 5]). Clarifying the purpose and relevance of PROMs in the e-mail with invitation link
sent to patients, including the explanation that not all questions may be applicable
to each individual, could enhance patient experiences and their willingness to complete
the questionnaires. Also, the number of questions could be reduced. In addition, some
patients indicated to have missed certain specific questions, for example, questions
about the effectiveness of the medication and side effects, or about work, sports,
and needs toward rehabilitation. Lastly, ensuring proper alignment of the outpatient
appointments and measurement time points, and suggestions for improvement of technical
aspects related to the digital PROMs application and to the dashboard facilitated
by the digital tool were mentioned by professionals.
Table 5
Suggestions and considerations for improvement, shared by patients and healthcare
professionals
|
Topic for improvement
|
Suggestions and considerations
|
|
Completion of the PROMs
|
–The option to fill out the questionnaires at the outpatient clinic would be convenient;
for instance, completing PROMs on a tablet in the waiting room, potentially with the
help of a volunteer (P, HCP)
–Administering the questionnaires by phone (HCP)
|
|
Accessibility for patients
|
–Clear instructions on where the questionnaires can be filled out (P)
–The possibility to resume filling out the questionnaires after pausing (P)
–The PROMs are not accessible for non-Dutch speakers or individuals who cannot handle
digital questionnaires (HCP)
|
|
Purpose of the PROMs and relevance to the patient
|
–Adding a sentence to the appointment letter, to announce that an invitation link
will be sent (HCP)
–In the instructions accompanying the invitation link, mention that the PROMs are
sent from the thrombosis outpatient clinic (P)
–In the instructions accompanying the invitation link, mention that the PROMs contain
general inventory questions about health and functioning to get an impression of the
patient's well-being as well as questions about symptoms or consequences related to
the thrombotic event, which may not all be relevant or applicable to each individual
(P)
–Note that after filling out the questionnaires, the care provider has insight into
the answers (P)
|
|
Content of the PROMs
|
|
|
Shortening the questionnaires
|
–Reduce the question load (HCP)
–Combining similar or slightly differently phrased questions (P; although complete
validated questionnaires have been added to the PROMs set, considering scoring and
interpretation of the responses)
|
|
Modifications to the PROMs
|
–Adding questions about the effectiveness of the medication and about side effects
(P)
–Adding questions about work and sports, what is needed in those areas, and about
needs toward rehabilitation (P)
–Adding free-text fields to the questionnaires, allowing for further elaboration (HCP)
–Provide the option to fill in “not applicable” (P, HCP)
|
|
Accessibility for professionals
|
–All professionals who work with PROMs should have access to the dashboard (HCP)
|
|
Timing
|
–Timing of the PROMs measurements; attention to proper alignment between the invitation
links and the appointments (HCP)
|
|
Digital PROMs application
|
|
|
Technical aspects
|
–Manual activation/deactivation of PROMs invitations (HCP)
–If possible, create a function that allows to transfer of an overview of PROM results
directly into the medical records, to enhance visibility (HCP)
|
|
Interpretation of the PROM responses
|
–Cleaner layout (HCP)
–Adding (ranges of) reference values in addition to the colors indicating normal/abnormal
values (HCP)
|
Abbreviations: PROMs, patient-reported outcome measures.
Note: Suggested by: patient (P) and/or healthcare professional (HCP).
Discussion
This first evaluation after the implementation of routine use of PROMs for VTE patients
visiting our outpatient clinic revealed that both patients and healthcare professionals
when asked about their experiences, felt neutral to positive about the use of PROMs.
Notably, PROMs were completed by less than half the patients who received the invitation.
Professionals perceived additional value of PROMs both during preparation for the
patient appointment and during the appointment. Patients who completed the PROMs,
however, indicated that their responses to the questionnaires were not always addressed
during the appointment, but despite this, felt that the symptoms and/or issues they
wanted to discuss had been paid attention, while patients who did not complete PROMs
also felt that they had been given proper attention. For some patients, the PROMs
enhanced the preparedness for the outpatient clinic visit, while others did not feel
prepared for the visit despite completing the questionnaires or felt prepared regardless
of the PROMs. The majority of the patients felt that the PROMs contained too many
questions.
Implementation of PROMs into routine care comes with challenges. Web-based data entry
may support PROMs completion and processing, by enabling to automatically incorporate
the data into the electronic health records or other digital platforms that are designed
to capture patient data.[28] Electronic data processing could also facilitate the interpretation of the PROM
responses through analysis and (visual) presentation of the results, which could facilitate
the use of PROM results by care providers in clinical decision-making. The completion
of PROMs by patients requires (digital) literacy and skills. Also, not all questionnaires
are available in multiple languages. Both the available resources and local context
could affect the implementation success.[23] Moreover, the engagement of involved staff and dedicated personnel to coordinate
the implementation process is essential for the integration of PROMs into routine
care.[29] In our study, the involved healthcare professionals all felt committed to continue
providing support to the use of PROMs.
The results of this early evaluation are encouraging, affirming the potential of routine
use of PROMs for VTE patients, while key lessons can be learned that will benefit
further implementation and application of PROMs in routine care. First, resources
to increase and optimize the use of PROMs could be made available, including the potential
to generate overviews of the distribution of PROM invitations, as well as the technical
resources to support data processing and interpretation of the PROM responses. Second,
patients should be better informed about the purpose and relevance of the questionnaires.
Third, training and education on the application and interpretation of PROMs and their
effects could improve healthcare professionals' ability to use the PROMs and enhance
patients' experiences. One example would be to share the instruction to always discuss
PROM results with the patient and follow up on responses to the questionnaires during
the appointment. Lastly, reduction of the question load could improve the completion
and use of PROMs.
The feasibility of implementation of other ICHOM standard sets has been demonstrated
in several studies.[29]
[30]
[31]
[32]
[33]
[34]
[35] In a study evaluating the implementation of the ICHOM standard set for stroke, PROMs
were considered relevant by patients, although they were found to have a limited understanding
of the purpose of PROM assessment.[36] This is in line with our findings based on patients' experiences. Reported facilitators
for successful implementation include the direct value of PROMs on individual patient
care, professional education and feedback, and efforts to motivate patients to complete
PROMs.[37]
[38] All professionals participating in the current study believed that feedback about
the use of PROMs can indeed further improve its successful and meaningful application.
Studies in the field of nephrology provided insights into the application of PROMs
and guidance for optimal discussion of PROM results.[39]
[40] Both patients and healthcare professionals highlighted the importance of always
discussing PROM results, with active participation of patients and a guiding role
of professionals. Key enablers included a trustful relationship between the patient
and care provider, a safe and private setting during a face-to-face consultation,
an announcement of the discussion about PROM results during the appointment, and focusing
on the most important topics during the consultation to deal with time constraints.
These findings can be used for training of healthcare professionals.
The study has some limitations. First, the number of participants is small. As this
was an evaluation study at a single academic hospital, performed a few months after
implementation of the PROMs as part of routine care, we included as many patients
who encountered the PROMs during follow-up at the outpatient clinic as were available.
Consequently, our findings may not be generalizable to other hospitals or settings.
We described the insights based on the first experiences of patients and healthcare
professionals, but could not draw definitive conclusions due to the small sample size.
Second, the patients who had completed PROMs at both follow-up time points could not
accurately recall the time they spent completing the questionnaires. However, as patients
indicated that the number of questions was too large, we still gained insight into
their experience with the time burden associated with the completion of the PROMs.
Future studies are needed to assess how insights gained from the questionnaires are
used in daily care, as well as to determine appropriate follow-up actions and evaluation
in relation to specific PROM results, and their impact on outcomes such as quality
of life.
Conclusion
We gained insights based on the first experiences of patients and healthcare professionals
with the use of PROMs in routine outpatient thrombosis care. PROMs were considered
valuable by the healthcare professionals, and are believed to provide additional value
during preparation for the visit to the outpatient clinic as well as during the visit.
Patients, however, expressed that the PROMs contained too many questions and that
their responses were not always addressed during the visit, but despite this, felt
that they had been given proper attention. Some patients felt better prepared for
the visit due to the completion of the PROMs, while others did not. The experiences
and suggestions for improvement can be used to improve the application of PROMs in
clinical practice and support further implementation of PROMs in daily thrombosis
care.
Bibliographical Record
Cindy M.M. de Jong, Sophie N.M. ter Haar, Willem Jan W. Bos, Paul L. den Exter, Menno
V. Huisman, Marlon H.C. Kosterink, Thijs E. van Mens, Frederikus A. Klok. First Experiences
of Patients and Healthcare Professionals with Routine Use of Patient-Reported Outcome
Measures for Venous Thromboembolism. TH Open 2025; 09: a26007707.
DOI: 10.1055/a-2600-7707
