· Executive Brief
CTEPH Awareness Day 2026
Use the observance to review how people find information, enter the right route, and remain connected through follow-through.
Leadership signal
Recognition becomes useful when leaders inspect the real route.
The strongest use of the observance is operational. Map where questions enter, how requests move, when ownership changes, and how unresolved work becomes visible. The goal is not to make a clinical claim. It is to make the organization’s response easier to understand and manage.
Start by distinguishing what is known from what the organization still needs to learn. A campaign plan, communication volume, or meeting count does not establish that a route is usable. Leaders need direct listening, clear ownership, locally defined measures, and a method for keeping exceptions visible.
Executive opening
CTEPH is found late when follow-up after pulmonary embolism is left to chance
Pulmonary embolism is treated as an emergency, and most health systems have invested heavily in the first hours of care. The months that follow receive far less design attention. Pulmonary embolism is the third most common cause of cardiovascular death worldwide, yet post-embolism care is typically limited to a few follow-up appointments.[5] Structured follow-up and rehabilitation programs remain largely lacking, in contrast with conditions such as myocardial infarction.[5] Untreated, pulmonary embolism carries a mortality rate of 25% to 30%, falling to approximately 8% after one year with treatment.[5]
Chronic thromboembolic pulmonary hypertension, or CTEPH, is the complication that depends most on that follow-up. A 2026 review reported a cumulative incidence of 0.5% to 4% within two years after acute pulmonary embolism.[1] The same review described persistent right ventricular dysfunction in up to 18% of patients beyond three months.[1] Many more survivors live with breathlessness, exercise intolerance or psychological strain without pulmonary hypertension.[1][8]
The leadership problem is recognition. CTEPH has a nonspecific presentation and is often diagnosed late.[2] A patient with lingering breathlessness may move between primary care, cardiology, pulmonology and the emergency department before anyone asks whether the original clot left lasting damage. Surgical, interventional and drug therapies have improved survival, which makes early recognition and systematic follow-up more valuable.[1]
CTEPH Awareness Day is a practical moment to ask three things. Does the organization know which pulmonary embolism survivors return for follow-up? Who owns that follow-up, and how quickly does a suspected case reach a team that offers pulmonary endarterectomy or balloon pulmonary angioplasty? The sections below summarize current peer-reviewed evidence on burden, detection, response teams, referral, equity, workforce and communication, alongside the executive guidance already on this page.
Current evidence
Persistent findings after pulmonary embolism are common, and CTEPH is easy to miss
Residual findings after pulmonary embolism are common, while CTEPH itself is uncommon. In a retrospective cohort of 325 patients hospitalized with acute pulmonary embolism, residual perfusion defects persisted in 235, or 72%, at a mean follow-up of three months.[4] Dyspnea and mortality did not differ between patients with and without defects.[4] However, chronic thromboembolic pulmonary disease or pulmonary hypertension occurred only in patients with residual defects.[4] Independent predictors of residual defects included prior venous thromboembolism (odds ratio 7.61) and intermediate-high or high-risk embolism (odds ratio 3.66).[4] The authors read this as support for a targeted follow-up imaging strategy.[4]
Symptoms persist even after advanced acute treatment. A tertiary center followed 300 patients with intermediate-high or high-risk pulmonary embolism treated with ultrasound-assisted catheter-directed thrombolysis.[6] Among 260 survivors with follow-up beyond three months, 45 (17%) reported persistent respiratory symptoms and 18 (6.9%) met criteria for post-embolism cardiac impairment.[6] CTEPH was diagnosed in 7 patients (2.7%), and radiological reassessment of index imaging judged every case to be pre-existing.[6] The index scan, in other words, can itself be a detection opportunity.
Post-embolism syndrome is broader than CTEPH. A co-design study reported that approximately 50% of pulmonary embolism survivors experience persistent physical and psychological symptoms consistent with the syndrome.[8] Children are affected as well. Across six tertiary pediatric hospitals in the Netherlands, prevalence of post-embolism syndrome was 35% at three months, 24% at one year and 16% at two years.[7]
Detection is the weakest step. CTEPH-DETECT was a quasi-cluster randomized trial of 73 clinicians caring for 400 outpatients with prior pulmonary embolism.[2] Their patients had possible signs of pulmonary hypertension, and clinicians were assigned to an electronic alert or no alert.[2] Echocardiography was ordered for 32.5% of patients in the alert group and 17.5% in the control group.[2] Pulmonary hypertension was detected in 10.5% versus 5.0%, although no patient received a new formal CTEPH diagnosis in either group.[2] A 2026 narrative review noted that prognosis in CTEPH is driven primarily by right ventricular dysfunction.[1]
Together, these studies describe a large population with lingering problems and a much smaller group with a serious, treatable disease. The operating challenge is to separate the two reliably without sending every survivor for specialist testing. Residual imaging findings, persistent symptoms and the index scan are the signals the evidence points to, and each needs someone assigned to act on it.[4][6]
Figure 1
Lingering findings after pulmonary embolism are common; confirmed CTEPH is uncommon
Percent of patients with each finding after pulmonary embolism, as reported in each study. Values are copied from the cited studies [4], [6], [7], [8]; none is estimated.
Data note. These values come from different studies, populations, settings and definitions, so this is an indirect comparison; the bars show how common lingering findings are relative to confirmed CTEPH, not a pathway from one to the other.
Limitation. The 50% value is an approximate figure stated by study authors, the pediatric value applies to children only, and the 17% and 2.7% values come from one center treating higher-risk patients.
Figure data (5 rows)
| Measure | Value | Population, setting and year as reported | Source |
|---|---|---|---|
| Residual perfusion defects at about three months | 72% | 235 of 325 adults hospitalized with acute pulmonary embolism, 2012 to 2024, mean follow-up of 3 months | [4] |
| Persistent physical and psychological symptoms (post-embolism syndrome) | 50% | Approximate share of pulmonary embolism survivors, as stated in a 2026 co-design study | [8] |
| Post-embolism syndrome in children at three months | 35% | 63 of 178 children at six tertiary pediatric hospitals in the Netherlands, 2012 to 2022 | [7] |
| Persistent respiratory symptoms after catheter-directed thrombolysis | 17% | 45 of 260 survivors with follow-up beyond 3 months at one tertiary center (median 6.1 months) | [6] |
| CTEPH diagnosed after catheter-directed thrombolysis | 2.7% | 7 of 260 survivors at the same center; all cases judged pre-existing on reassessment of index imaging | [6] |
Continuum of care
Where follow-up breaks between the emergency and the expert center
The acute phase of pulmonary embolism is increasingly organized around pulmonary embolism response teams, often called PERTs. At one institution, a PERT was consulted in 52% of 335 intermediate-high or high-risk cases from 2016 to 2019.[9] Cases with PERT involvement had a shorter mean length of stay (13 versus 24 days) and lower in-hospital mortality (8.1% versus 21.0%), with no difference in embolism-related mortality.[9] PERT involvement was also associated with greater use of catheter-directed thrombolysis (23.0% versus 1.9%).[9] These are observational associations, and consultation was more common for saddle emboli.[9]
The handoff out of that acute structure is less defined. A 2026 United Kingdom review emphasized structured follow-up to identify CTEPH and post-embolism syndrome early, describing both as underdiagnosed.[10] A German review called for clearly defined care pathways and interdisciplinary cardiac rehabilitation after pulmonary embolism.[5] Its stated goals for follow-up include preventing recurrence, improving physical performance and reducing breathlessness that is often linked to deconditioning.[5]
Follow-up also depends on who returns. In the tertiary thrombolysis cohort, follow-up beyond three months was available for 260 survivors, or 88%.[6] The pediatric cohort retained 94% of patients at one year and 93% at two years.[7] Both figures come from structured research follow-up, so routine programs should verify their own retention rather than assume it.
Targeting can make follow-up more efficient. The ATTRACT trial randomized 691 patients with proximal deep vein thrombosis.[15] In a later analysis, embolism-related late symptom events were frequent (66.7%) among patients who presented with diagnosed or suspected pulmonary embolism.[15] They were infrequent (2.0%) among other patients.[15] The authors suggested focusing post-embolism evaluation after thrombolysis on patients with iliofemoral thrombosis who presented with embolism symptoms.[15]
Expert-center care does not end with the procedure. In a single-center cohort of 220 patients undergoing pulmonary endarterectomy, antiphospholipid syndrome was identified in 36 (16.4%).[13] Over a median 70.5-month follow-up, late in situ pulmonary artery thrombosis was more frequent in those patients (36.1% versus 15.2%), although the adjusted association was borderline.[13] Ten-year recurrence-free survival was 64% in patients with antiphospholipid syndrome versus 82% in others.[13] Each of these findings argues for follow-up that is planned at discharge rather than improvised when symptoms return. Long-term surveillance therefore needs a clear owner shared between the expert center and local clinicians.
Figure 3
Why the pathway breaks
People
- Clinicians do not connect breathlessness to a past embolism
- Few experienced operators for endarterectomy and complex angioplasty
- No named coordinator tracking survivors after discharge
Process
- Post-embolism care limited to a few follow-up appointments
- No defined handoff from the response team to follow-up
- No agreed referral route or return of results with an expert center
Technology
- No decision support prompting evaluation of at-risk survivors
- Index imaging not reviewed for signs of pre-existing chronic disease
- Residual perfusion findings not flagged for follow-up
Environment
- Distance from expert centers for rural and regional patients
- Pediatric and adult services without a shared follow-up plan
- Rehabilitation programs for post-embolism syndrome largely lacking
Policy
- Limited outcome and cost-effectiveness data to guide commissioning
- No standard for follow-up intensity in higher-risk subgroups
- Survival evidence for angioplasty still preliminary
Measurement
- Follow-up retention not tracked
- Referral and treatment not stratified by age, sex, geography or insurance
- Persistent symptoms not recorded in a consistent way
Unranked qualitative cause-and-effect diagram for the outcome in the box: Pulmonary embolism survivors with persistent symptoms are not evaluated, referred or treated for CTEPH in time Causes are assembled from the cited literature [1], [2], [4], [5], [6], [7], [10], [11], [13], [14]; categories are not weighted and their order carries no meaning.
Data note. Qualitative; no frequencies are implied.
Limitation. Causes drawn from published studies may not all apply locally; validate them with frontline teams.
Figure data (6 rows)
| Category | Causes drawn from the cited literature |
|---|---|
| People | Clinicians do not connect breathlessness to a past embolism; Few experienced operators for endarterectomy and complex angioplasty; No named coordinator tracking survivors after discharge |
| Process | Post-embolism care limited to a few follow-up appointments; No defined handoff from the response team to follow-up; No agreed referral route or return of results with an expert center |
| Technology | No decision support prompting evaluation of at-risk survivors; Index imaging not reviewed for signs of pre-existing chronic disease; Residual perfusion findings not flagged for follow-up |
| Environment | Distance from expert centers for rural and regional patients; Pediatric and adult services without a shared follow-up plan; Rehabilitation programs for post-embolism syndrome largely lacking |
| Policy | Limited outcome and cost-effectiveness data to guide commissioning; No standard for follow-up intensity in higher-risk subgroups; Survival evidence for angioplasty still preliminary |
| Measurement | Follow-up retention not tracked; Referral and treatment not stratified by age, sex, geography or insurance; Persistent symptoms not recorded in a consistent way |
Access
Reaching endarterectomy, balloon angioplasty and response-team care
Access to CTEPH treatment means access to teams that perform pulmonary endarterectomy and balloon pulmonary angioplasty. A Japanese nationwide registry from 2018 to 2023 included 1,270 patients, of whom 299 formed a treatment cohort undergoing one of these procedures.[3] Lower baseline lung diffusing capacity was associated with smaller improvements after treatment and a higher risk of clinical events.[3] Outcomes deteriorated below a diffusing capacity of 59.6%, suggesting that diffusing capacity may help stratify prognosis and treatment benefit.[3]
Survival data show what is at stake when patients do not reach treatment. In a multicenter cohort, 232 patients with inoperable CTEPH underwent balloon pulmonary angioplasty and 70 declined it.[12] Over a median follow-up of 6.0 years, 8-year survival was 86.7% in the angioplasty group and 57.8% in the group that declined.[12] The authors reported a tendency toward lower mortality even among patients who received only partial sessions.[12] They described the findings as preliminary and requiring confirmation in randomized trials.[12]
Response-team access also varies by geography. A regional tertiary hospital in North Queensland, Australia, treated 23 patients with large-bore mechanical thrombectomy after multidisciplinary response-team evaluation between January 2022 and June 2025.[11] Technical success was achieved in all cases, and 11 patients (47.8%) required intensive care after the procedure.[11] The authors concluded that the results support the potential for appropriately resourced regional centers to provide advanced interventional care.[11]
The United Kingdom review highlighted a related gap. It called for robust local outcome and cost-effectiveness data to guide commissioning and ensure equitable access.[10] For most health systems, the access question is concrete. Which partner performs endarterectomy and angioplasty, how does a referral reach that team, and how does the result come back to the referring clinician? The same review noted 30-day mortality ranging from about 2% in low-risk cohorts to more than 25% in hemodynamically unstable cases.[10]
Leaders should be able to answer those questions before a patient needs them. Written referral agreements, a named contact at the expert center and an agreed return of results turn a clinical possibility into a reliable route. Without them, the survival differences reported in treated cohorts remain out of reach for patients who are never referred.[12] Incomplete referral packets add delay, so the referring team and the expert center should agree in advance on what information travels with each patient.
Executive guidance · System route
Map the path from first contact to verified follow-through.
Use this route as a discussion framework. Replace each stage with the organization’s approved process, qualified roles, current service capacity, and applicable requirements. Do not infer a clinical protocol from the observance title.
The route at a glance
- Listen
- Clarify entry
- Coordinate the partner route
- Protect transitions
- Verify and learn
Reliability rule: Every stage needs a named owner, an observable status, an approved escalation path, and a defined signal that shows whether responsibility moved or remained unresolved.
Listen
Gather questions and friction points from people using the route, frontline teams, and community-facing staff. Separate observed barriers from assumptions.
Clarify entry
Publish a plain-language first step and identify who receives requests through each approved channel.
Coordinate the partner route
Align internal teams and external partners around one current message, real entry point, receiving owner, escalation path, and follow-through signal.
Protect transitions
Use acknowledgment and status visibility when responsibility moves between services, locations, or organizations.
Verify and learn
Review unresolved work, repeat contacts, and avoidable handoffs. Use the findings to improve the route rather than blame individuals.
Figure 2
The system route as one flow
The five stages of the system route described in this brief, drawn as one flow with a learning loop back to the start. The stages are the page’s original executive guidance, not a clinical protocol.
Data note. Shows sequence and handoffs only; it carries no counts or rates.
Limitation. Local processes may add, merge or reorder stages under organizational policy.
Figure data (5 rows)
| Stage | What the stage requires |
|---|---|
| Listen | Gather questions and friction points from people using the route, frontline teams, and community-facing staff. Separate observed barriers from assumptions. |
| Clarify entry | Publish a plain-language first step and identify who receives requests through each approved channel. |
| Coordinate the partner route | Align internal teams and external partners around one current message, real entry point, receiving owner, escalation path, and follow-through signal. |
| Protect transitions | Use acknowledgment and status visibility when responsibility moves between services, locations, or organizations. |
| Verify and learn | Review unresolved work, repeat contacts, and avoidable handoffs. Use the findings to improve the route rather than blame individuals. |
Equity and trust
Who is missed: people with vague symptoms, children and rural patients
CTEPH equity starts with who gets evaluated. Because the disease has a nonspecific presentation, recognition depends heavily on whether a clinician connects breathlessness to a past embolism.[2] Decision support can reduce that dependence on individual memory. In CTEPH-DETECT, the alert was associated with nearly doubling echocardiographic screening among patients at risk.[2] Eligible patients had persistent or new symptoms, or unexplained test abnormalities, at least six months after their embolism and no recent echocardiogram.[2] A prompt applied to every eligible patient is less likely to vary by who the patient is or which clinician they see.
Children are a group that adult pathways can overlook. The Dutch pediatric cohort included 178 patients.[7] Physical limitations at one year were associated with psychological distress at three months (odds ratio 4.3) and with incomplete thrombus resolution (odds ratio 3.8).[7] Exercise at least three times per week was inversely associated with physical limitations (odds ratio 0.31).[7] The authors emphasized the need for comprehensive, multidisciplinary care.[7] Pediatric and adult services therefore need a shared plan for follow-up and for the move into adult care.
Geography shapes access to both acute and chronic expertise. The North Queensland experience shows that regional hospitals can deliver advanced acute care when they are appropriately resourced.[11] Rural patients still need clear routes to expert chronic care. Travel, cost and time away from work can stand between a referral and a completed evaluation. Telehealth review, shared imaging and coordinated travel support are practical ways to shorten that distance, and each can be tested locally.
Risk is also unevenly distributed within treated populations. Patients with antiphospholipid syndrome undergoing endarterectomy were younger (40.2 versus 50.2 years) and more often had prior deep vein thrombosis (69.4% versus 48.9%).[13] Triple-positive patients had in situ thrombosis in 83.3% of cases versus 26.7% of other patients with the syndrome, a finding the authors called hypothesis-generating.[13] The authors suggested that preoperative antibody testing may inform surveillance.[13] Equity, in this sense, includes follow-up intensity matched to measured risk.
The United Kingdom review tied these questions together by calling for data to ensure equitable access.[10] Stratifying follow-up completion, referral and treatment by age, sex, geography, insurance and language is the most direct way to see whether recognition is fair. Trust grows when patients see that persistent symptoms receive a defined next step, wherever they live.
Human infrastructure
The specialized teams behind recognition and treatment
CTEPH care depends on a chain of specialized skills: imaging interpretation, echocardiography, catheterization, surgery, interventional angioplasty, rehabilitation and coordination. In the United Kingdom, management of high-risk and select intermediate-high-risk pulmonary embolism is shifting toward catheter-based treatment by radiologists embedded in multidisciplinary teams.[10] The review described decision-making aimed at rapid right ventricular unloading, minimizing bleeding risk and optimizing cost-effectiveness.[10] That shift places interventional radiology inside the response team, with consequences for call coverage, training and staffing plans.
Expert procedures depend on experienced operators. One institution reported transcollateral retrograde balloon angioplasty for 30 lesions in 19 patients between 2016 and 2025.[14] Procedural success was achieved in 15 lesions (50%), and success rates across three sequential groups of 10 lesions were 50%, 30% and 70%.[14] Mild hemoptysis occurred in 3 cases (10%), with no severe complications or deaths.[14] Techniques like this sit with a few experienced teams, which is one reason referral relationships matter. A Japanese nationwide registry followed 1,270 patients with CTEPH from 2018 to 2023.[3]
Recognition depends on the broader clinical workforce as well. In CTEPH-DETECT, patients whose clinicians received the alert were more likely to have echocardiography ordered than patients whose clinicians did not.[2] The finding that every CTEPH case in the thrombolysis cohort was judged pre-existing on reassessment of index imaging also places radiology inside the detection process.[6] Acute procedures draw on critical care as well: in North Queensland, 11 of 23 thrombectomy patients (47.8%) needed intensive care afterward.[11]
Recovery needs its own workforce. The ReSTORE-PE program was developed through interviews with 31 people living with post-embolism syndrome and three co-design workshops with patients, clinicians and academics.[8] The resulting design is a clinician-led, community-based program combining supervised exercise, education, psychological support and self-management training.[8] Its behavioral analysis identified all 14 domains of a theoretical framework and mapped them to more than 50 behavior change techniques.[8] The German review similarly called for interdisciplinary cardiac rehabilitation after pulmonary embolism.[5]
Neither rehabilitation model has been tested at scale, so leaders should treat them as designs to pilot rather than proven services.[8] Coordination is the role that ties the chain together. A named coordinator who tracks survivors, schedules testing and confirms that expert-center results reach the local team addresses the quiet loss that this evidence describes.
Executive guidance · Operating dashboard
Measure whether the operating route works as intended.
Do not publish a number until the organization defines its numerator, denominator where relevant, owner, source system, exclusions, review cadence, and limits. The candidates below are management prompts, not benchmarks or reported results.
Four operating signals
Each signal pairs an executive question with one candidate local measure, set out below.
Executive guidance · Signal
Entry-point clarity
Can people and staff identify the approved first step without searching across conflicting instructions?
- Candidate local measure
- Locally defined contact, routing, and repeat-contact signals by channel and service.
Executive guidance · Signal
Ownership reliability
Does a specific team accept each request and make its status visible?
- Candidate local measure
- Requests without an owner, aged work, transfers, and escalations using locally approved definitions.
Executive guidance · Signal
Partner-route reliability
Do participating teams share one current route and understand who owns each dependency?
- Candidate local measure
- Locally defined conflicting instructions, unaccepted handoffs, unresolved dependencies, repeat contacts, and partner feedback.
Executive guidance · Signal
Improvement closure
Does the organization correct recurring friction and report what changed?
- Candidate local measure
- Selected barriers, assigned actions, completion status, and post-change review.
Figure 4
The operating system behind the dashboard
The four operating signals from this brief’s dashboard, each tied to the candidate owner named in the executive scorecard, around one accountable route. Drawn from the page’s original executive guidance.
Data note. Structural diagram; no measured values.
Limitation. Owners are candidates to be confirmed locally.
Figure data (4 rows)
| Operating signal | Candidate owner |
|---|---|
| Entry-point clarity | Executive sponsor and operational lead |
| Ownership reliability | Operational owner and participating teams |
| Partner-route reliability | Sending and receiving owners |
| Improvement closure | Improvement owner and executive sponsor |
Executive guidance · Handoff workflow
Keep work owned when it crosses a boundary.
A handoff is reliable only when the sending party knows who is expected to receive the work, the receiving party acknowledges responsibility, and any unresolved exception remains visible. Local policy and qualified judgment control the actual process.
How responsibility moves
Lane A
From message to accepted ownership
- Confirm the approved message and intended audience.
- Publish the actual entry point and receiving role.
- Acknowledge receipt using the locally approved method.
- Escalate when ownership or response remains unclear.
Lane B
From accepted ownership to verified follow-through
- Record the next accountable owner and visible status.
- Name the sending and receiving owners, shared information, current status, and unresolved dependency.
- Keep unresolved work visible across boundaries.
- Confirm closure or document the continuing exception.
Executive guidance · Executive scorecard
Ask questions that connect intent, ownership, and results.
The scorecard keeps review focused on decisions. Leaders should set definitions locally, examine variation without overclaiming cause, and pair quantitative signals with the experience of people who use and operate the route.
Who reviews what
- Executive sponsor and operational lead
- Operational owner and participating teams
- Sending and receiving owners
- Improvement owner and executive sponsor
Candidate owners named in the scorecard, confirmed locally.
| Operating signal | Executive question | Candidate owner | Suggested review point |
|---|---|---|---|
| Entry-point clarity | Can people and staff identify the approved first step without searching across conflicting instructions? | Executive sponsor and operational lead | At campaign launch and close |
| Ownership reliability | Does a specific team accept each request and make its status visible? | Operational owner and participating teams | At a locally defined cadence |
| Partner-route reliability | Do participating teams share one current route and understand who owns each dependency? | Sending and receiving owners | At a locally defined cadence |
| Improvement closure | Does the organization correct recurring friction and report what changed? | Improvement owner and executive sponsor | Until action is verified |
Figure 5
Control points for recognizing and referring CTEPH after pulmonary embolism
| Control point | Risk if missing | Owner | Evidence of control |
|---|---|---|---|
| Every pulmonary embolism discharge has a scheduled follow-up with a named owner | Survivors with persistent symptoms drop out after a few appointments | Hospital medicine lead with the response team coordinator | Share of discharges with a completed follow-up visit at about three months |
| Persistent symptoms and residual imaging findings trigger structured evaluation | Patients at risk of chronic thromboembolic disease are not tested | Pulmonary and cardiology service leads | Share of symptomatic survivors with echocardiography or perfusion imaging ordered |
| Decision support prompts evaluation of at-risk survivors | Recognition depends on individual clinician memory | Chief medical information officer | Alert firing and acceptance rates, and resulting test orders |
| Index imaging reviewed for signs of chronic disease | Pre-existing CTEPH is missed at first presentation | Chief of radiology | Documented review rate for index scans in pulmonary embolism cases |
| Written referral agreement with an endarterectomy and angioplasty center | Suspected cases wait without a route to expert assessment | Chief medical officer and service line executive | Time from suspected CTEPH to expert-center evaluation |
| Shared long-term surveillance plan after expert-center treatment | Late complications in higher-risk subgroups go unwatched | Expert-center liaison with local cardiology or pulmonology | Share of treated patients with a documented surveillance owner |
| Follow-up, referral and treatment stratified by population | Children, rural patients and other groups are missed without notice | Quality and equity committee of the board | Stratified completion report reviewed at a set cadence |
Control points derived from the cited evidence [2], [4], [5], [6], [10], [12], [13] and this brief’s executive guidance.
Data note. Each row is a control to verify, not a measured result.
Limitation. Owners and evidence of control must follow local policy and applicable requirements.
Public communication
Explaining persistent symptoms without false alarm or false reassurance
Communication after pulmonary embolism must hold two messages at once. Persistent symptoms are common, with approximately 50% of survivors reporting physical and psychological effects consistent with post-embolism syndrome.[8] CTEPH is much less common, with a cumulative incidence of 0.5% to 4% within two years.[1] Survivors need both facts so that they neither dismiss worsening breathlessness nor assume the worst diagnosis. Treatment substantially lowers mortality after pulmonary embolism, which gives survivors reason for confidence as well as vigilance.[5]
Patients’ own accounts shape how messages should be built. In the ReSTORE-PE interviews and workshops, key determinants of recovery behavior included knowledge, beliefs about capabilities, emotion, environmental context and social influences.[8] The strongest evidence supported goal setting, self-monitoring, feedback, action planning and graded tasks.[8] Discharge and follow-up materials can draw on these elements rather than relying on general reassurance. The program also integrated education and psychological support, which gives communication teams concrete content to align with.[8]
Psychological effects deserve explicit attention. In the pediatric cohort, psychological distress at three months was associated with physical limitations at one year.[7] The 2026 review of post-embolism syndrome also listed psychological impairment among the long-term sequelae of pulmonary embolism.[1] A German review added that embolism can bring psychosocial effects and significant impairments in health-related quality of life.[5] Messages for families and adult survivors should name these effects and say where support is available.
Clinician communication matters as much as public messaging. In one trial, an alert-based decision support tool was associated with nearly doubling echocardiographic screening among at-risk patients.[2] The authors noted that a larger trial is needed to determine clinical impact.[2] Communication between expert centers and referring teams also carries long-term risk information, such as antibody results that may inform surveillance after endarterectomy.[13]
Public messages for CTEPH Awareness Day should be accurate and modest. They can describe common lingering symptoms, explain that a small share of survivors develop a treatable form of pulmonary hypertension, and give a clear route to evaluation.[1] They should avoid promising outcomes, because survival data for balloon angioplasty in inoperable disease remain preliminary.[12] Messages should also be tested with survivors, families and community partners before release, so that plain language does not drift from what the evidence supports.
Executive guidance · 90-day plan
Move from listening to a verified improvement in 90 days.
The time boxes below are a management framework, not a clinical timeline. Adjust them to risk, scope, governance, resources, stakeholder participation, and applicable review requirements.
Ninety days, three moves
- Days 1–30See the current route
- Days 31–60Build the reliable path
- Days 61–90Make the change visible
Days 1–30 · Listen and map
See the current route
- Name an executive sponsor and an operational owner.
- Listen to people using the route and representative frontline teams.
- Map how CTEPH Awareness Day communications connect to real entry points, owners, transitions, and escalation.
- Select one recurring barrier that the organization can responsibly address.
Days 31–60 · Design and test
Build the reliable path
- Define the trigger, receiving owner, required information, acknowledgment, escalation, and closure signal.
- Validate the design with every sending and receiving team involved.
- Test one internal or partner handoff and correct a verified communication, dependency, or ownership gap.
- Test the route in more than one representative setting or operating period where practical.
Days 61–90 · Implement and verify
Make the change visible
- Launch the redesigned route with a small set of locally defined measures.
- Review unresolved work and recurring friction using a learning approach.
- Correct implementation barriers and record who owns each remaining dependency.
- Report what changed, what evidence was reviewed, and what still requires live oversight.
Figure 6
The 90-day plan on one timeline
The 90-day plan from this brief drawn as a timeline: each action sits in the 30-day window the plan assigns it. The full wording of each action is in the figure data and in the plan above.
Data note. Time boxes are a management framework, not a clinical timeline.
Limitation. Durations are uniform 30-day windows; real tasks may span windows.
Figure data (12 rows)
| Window | Action |
|---|---|
| Days 1–30 · Listen and map | Name an executive sponsor and an operational owner. |
| Days 1–30 · Listen and map | Listen to people using the route and representative frontline teams. |
| Days 1–30 · Listen and map | Map how CTEPH Awareness Day communications connect to real entry points, owners, transitions, and escalation. |
| Days 1–30 · Listen and map | Select one recurring barrier that the organization can responsibly address. |
| Days 31–60 · Design and test | Define the trigger, receiving owner, required information, acknowledgment, escalation, and closure signal. |
| Days 31–60 · Design and test | Validate the design with every sending and receiving team involved. |
| Days 31–60 · Design and test | Test one internal or partner handoff and correct a verified communication, dependency, or ownership gap. |
| Days 31–60 · Design and test | Test the route in more than one representative setting or operating period where practical. |
| Days 61–90 · Implement and verify | Launch the redesigned route with a small set of locally defined measures. |
| Days 61–90 · Implement and verify | Review unresolved work and recurring friction using a learning approach. |
| Days 61–90 · Implement and verify | Correct implementation barriers and record who owns each remaining dependency. |
| Days 61–90 · Implement and verify | Report what changed, what evidence was reviewed, and what still requires live oversight. |
Executive guidance · Leadership close
Carry one accountable improvement beyond the campaign window.
Recognition matters. It becomes durable when leaders also listen, clarify the route, support the people operating it, close an identified gap, and report the result without claiming more than the evidence supports.
Leadership commitment
Listen to the people closest to the route, assign one barrier, and verify the change.
Executive action kit · Day observance
Turn CTEPH Awareness Day into accountable action.
Use the observance to review how people find information, enter the right route, and remain connected through follow-through.
Leadership focus
Use this observance to examine trustworthy information, prevention access, and community connection. Select one verified barrier, assign an accountable owner, and carry the improvement beyond the campaign window.
Workforce lens
Ask whether staffing, role clarity, training, tools, workload, and escalation support the people operating the information, access, coordination, and follow-through pathway.
Patient and community lens
Make the approved first step clear. Test whether a person can move from information to an acknowledged next action without navigating conflicting instructions.
Equity and access lens
Review language, disability, transportation, digital access, geography, trust, and other barriers using protected feedback and locally appropriate data.
Five-minute briefing
Inspect the operating sequence
Listen with people using the pathway, frontline teams, operational leaders, and community partners. Find one a message, request, referral, or handoff that does not reach an accountable owner, then test the locally approved route from entry through acknowledged follow-through.
- Listen
- Clarify entry
- Coordinate the partner route
- Protect transitions
- Verify and learn
Leadership actions for this week
- Name an executive sponsor and frontline operating owner.
- Ask people using and operating the pathway where ownership becomes unclear.
- Test one representative route from first question to acknowledged next step.
- Select one barrier that can be corrected without overstating the evidence.
- Set a review date and define how completion will be verified.
Candidate measures
Define every numerator, denominator where relevant, owner, data source, exclusions, cadence, and limitation locally. These are management prompts, not external benchmarks.
- Locally defined contact, routing, and repeat-contact signals by channel and service.
- Requests without an owner, aged work, transfers, and escalations using locally approved definitions.
- Locally defined conflicting instructions, unaccepted handoffs, unresolved dependencies, repeat contacts, and partner feedback.
Department readiness checklist
- The public and staff entry points match the actual approved process.
- A specific role accepts each request, referral, or escalation.
- Handoffs include acknowledgment and a visible unresolved state.
- Language, disability, digital, transportation, and trust barriers receive explicit review.
- Communications do not introduce unsupported themes, statistics, or clinical advice.
- A named leader will review what changed after the observance.
Intended audiences
- Executive and Operational Leaders
- Public Health and Community Partners
Staff communication template
During CTEPH Awareness Day, our organization will connect awareness with a practical review of the information, access, coordination, and follow-through pathway. Use approved information, identify the correct entry point, confirm ownership when work moves, protect privacy, and escalate unresolved barriers through local channels.
Community communication template
CTEPH Awareness Day is an opportunity to share trustworthy information and make the next step easier to find. Use our approved channels for information and support. If a request changes hands, our goal is to keep ownership and follow-through visible.
Measurement worksheet
- Signal
- What observable condition will show whether the route works?
- Definition
- What is included, excluded, and counted?
- Owner
- Who reviews the signal and acts on exceptions?
- Cadence
- When will leaders review it?
- Equity check
- Which differences require protected, locally appropriate review?
- Closure
- What evidence will confirm the improvement was completed?
- Editorial review
- Completed
- Source records
- 2 listed under Authoritative resources
- Review standard
- Sourced facts remain separated from original executive guidance
- Clinical boundary
- No new statistical or clinical claim was added by this action kit
Sources and content boundary
Authoritative resources
Use note: All operating models, measures, scorecard questions, and action steps are original executive guidance. This article supports leadership planning and education. It does not replace clinical judgment, emergency procedures, legal advice, professional standards, organizational policy, or applicable federal, state, and local requirements.
Peer-reviewed references
References
Fifteen peer-reviewed sources, newest first. Each was individually verified through authenticated academic research databases. Bracketed numbers in the text link here; the original executive guidance on this page carries no citations because it is guidance, not a sourced claim. Sources last checked in those databases on .
- 1.Oblitas CM, Barrera-López L, Galeano-Valle F, Demelo-Rodríguez P. Post-pulmonary embolism syndrome: a practical narrative review. Revista Clínica Española (English Edition). 2026;226(4):502497. https://doi.org/10.1016/j.rceng.2026.502497
- 2.Goldhaber SZ, Rashedi S, Pfeferman M, Amalan C, Krishnathasan D, Bejjani A, et al. Alert-Based Computerized Decision Support to Increase Screening for Pulmonary Hypertension after Pulmonary Embolism: The CTEPH-DETECT Trial. The American Journal of Medicine. 2026:online ahead of print. https://doi.org/10.1016/j.amjmed.2026.09.034
- 3.Minatsuki S, Hatano M, Funakoshi K, Taniguchi Y, Adachi S, Inami T, et al. Significance of diffusing capacity of the lungs for carbon monoxide on chronic thromboembolic pulmonary hypertension. Thorax. 2026;81(9):913-917. https://doi.org/10.1136/thorax-2025-223670
- 4.Mansour M, Asi AR, Massalha E, Herscovici R, Chernomordik F, Goitein O, et al. Residual perfusion defects after acute pulmonary embolism: Prevalence, determinants, and clinical impact. The American Journal of Medicine. 2026;139(9):1237-1243. https://doi.org/10.1016/j.amjmed.2026.03.035
- 5.Nebel R, Bjarnason-Wehrens B, Schmidt T. Rehabilitation nach Lungenarterienembolie. Die Rehabilitation. 2026;65(01):61-72. https://doi.org/10.1055/a-2615-6956
- 6.Fumagalli RM, Zbinden S, Cardi S, Fürbringer-Schwarz A, Gyolay OA, Voci D, et al. Post-pulmonary embolism cardiac impairment and chronic thromboembolic pulmonary hypertension after ultrasound-assisted catheter-directed thrombolysis for acute pulmonary embolism. Clinical Research in Cardiology. 2026:online ahead of print. https://doi.org/10.1007/s00392-026-02894-7
- 7.Verweij MW, van Ommen CH, Diender M, Jongmans-van der Heide A, Hovinga IK, Rettenbacher E, et al. Post pulmonary embolism syndrome following paediatric pulmonary embolism: a multicentre, retrospective cohort study. The Lancet Haematology. 2026;13(6):e386-e395. https://doi.org/10.1016/s2352-3026(26)00071-2
- 8.Kenny C, Curran F, Klok FA, Lennon O, Matthews J, Ainle FN, et al. ReSTORE-PE (Rehabilitation to Support Total Recovery after Pulmonary Embolism): Development of a co-designed rehabilitation programme for post–pulmonary embolism syndrome. Thrombosis Research. 2026;265:109829. https://doi.org/10.1016/j.thromres.2026.109829
- 9.Cho LD, Snyder DJ, Zilinyi RS, Mosarla RC, Gul F, Madhavan M, et al. Pulmonary embolism response team consulting practices and in-hospital outcomes in intermediate-high and high-risk pulmonary embolism. Journal of Thrombosis and Thrombolysis. 2026:online ahead of print. https://doi.org/10.1007/s11239-026-03405-1
- 10.Schramm D, Morozow A, Mandal I, Lentaigne J, Hughes P, Jenkins P. An overview of interventional pulmonary embolism management in the United Kingdom in 2026. Clinical Radiology. 2026;100:107406. https://doi.org/10.1016/j.crad.2026.107406
- 11.Choy OS, Sun D, Khattak Y, Brown D, Dwivedee A, Junise M, et al. Closing the Gap: Mechanical Thrombectomy for Acute Pulmonary Embolism in Regional and Rural North Queensland, Australia. Annals of Vascular Surgery. 2026;130:437-442. https://doi.org/10.1016/j.avsg.2026.04.050
- 12.Zhou YP, Qiu LH, Wang PR, Wang AY, Liu C, Zhang K, et al. Long-Term Survival of Balloon Pulmonary Angioplasty for Inoperable Chronic Thromboembolic Pulmonary Hypertension. JACC: Asia. 2026;6(8):1485-1496. https://doi.org/10.1016/j.jacasi.2026.03.029
- 13.Lin H, Liu S, Xu X, Xu H. Antiphospholipid syndrome and late pulmonary thrombosis after pulmonary endarterectomy. Interdisciplinary CardioVascular and Thoracic Surgery. 2026:ivag269. https://doi.org/10.1093/icvts/ivag269
- 14.Ikeda N, Iijima R, Hara H. Retrograde Balloon Pulmonary Angioplasty for Otherwise Uncrossable Lesions in Chronic Thromboembolic Pulmonary Hypertension. Catheterization and Cardiovascular Interventions. 2026;108(3):840-843. https://doi.org/10.1002/ccd.70725
- 15.Daggumati L, Gu CS, Kolluri R, Kavali P, Vedantham S. The Effect of Thrombolysis of Deep Vein Thrombosis on Late Symptoms of Post–Pulmonary Embolism Syndrome. Journal of Vascular and Interventional Radiology. 2025;36(6):1026-1030. https://doi.org/10.1016/j.jvir.2025.02.024
Claim-to-source matrix
What each source supports
Every sourced claim in the new sections maps to the references that support it, the section where it is used, and the limitation a reader should keep in mind. Original executive guidance carries no sources because it is guidance, not a finding.
| Claim group | Sources | Years | Used in | Limitation |
|---|---|---|---|---|
| Incidence of CTEPH and spectrum of post-embolism syndrome | [1] | 2026 | Current evidence | Narrative review; incidence given as a range across studies. |
| Residual perfusion defects and chronic thromboembolic complications | [4] | 2026 | Current evidence | Retrospective single-country cohort of patients who had follow-up perfusion scans. |
| Persistent symptoms and pre-existing CTEPH after catheter-directed thrombolysis | [6] | 2026 | Current evidence | Single tertiary center; intermediate-high and high-risk patients only; median follow-up about six months. |
| Post-embolism syndrome in children | [7] | 2026 | Equity and trust | Retrospective review of records from six Dutch pediatric hospitals. |
| Electronic alert to prompt echocardiographic screening | [2] | 2026 | Current evidence | Quasi-cluster randomized trial of 400 patients; no new formal CTEPH diagnoses; clinical impact not yet shown. |
| PERT consultation and in-hospital outcomes | [9] | 2026 | Continuum of care | Single institution, 2016 to 2019; observational comparison with case-mix differences. |
| Structured follow-up, care pathways and rehabilitation after embolism | [5] [10] | 2026 | Continuum of care | Narrative reviews from German and United Kingdom settings. |
| Targeting post-embolism evaluation after deep vein thrombosis | [15] | 2025 | Continuum of care | Secondary analysis of trial adverse-event reports categorized by one blinded physician. |
| Antiphospholipid syndrome and late thrombosis after endarterectomy | [13] | 2026 | Continuum of care | Single-center retrospective cohort; adjusted association borderline. |
| Diffusing capacity and treatment benefit at expert centers | [3] | 2026 | Access | Japanese registry brief report; threshold needs external validation. |
| Long-term survival after balloon pulmonary angioplasty | [12] | 2026 | Access | Nonrandomized comparison with patients who declined the procedure; authors call findings preliminary. |
| Advanced acute care in a regional center | [11] | 2026 | Access | Twenty-three patients; descriptive short-term outcomes. |
| Operator experience in complex balloon angioplasty | [14] | 2026 | Human infrastructure | Nineteen patients at one institution over nearly a decade. |
| Co-designed rehabilitation for post-embolism syndrome | [8] | 2026 | Human infrastructure | Development study; program not yet tested for feasibility or effect. |
About the author
Greg Wahlstrom
MBAHCM
President and Chief Executive Officer, The Healthcare Executive
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