· Executive Brief
National Scleroderma Awareness Month 2026
Move from recognition activity to a visible operating route with named owners and closed loops.
Leadership signal
Use National Scleroderma Awareness Month to examine the system behind the message.
Leaders can use this window to test whether public information, service entry points, internal referrals, and follow-up responsibilities form one understandable route. The review should start with the experience of people using the system and the teams responsible for receiving them.
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
Systemic sclerosis tests whether a health system can coordinate
Systemic sclerosis is rare, but it touches almost every service line a health system runs. The disease can involve skin, hands, lungs, heart, gut and kidneys, and each organ brings its own specialist, test and schedule. Every handoff between those services is a chance for a test to go unordered or a result to go unread. Interstitial lung disease affects 40% to 60% of patients with systemic sclerosis and is the leading cause of death.[7] That combination of rarity and breadth makes coordination, not any single test, the central operating challenge.
The first gap is diagnosis. In a university rheumatology clinic cohort of 135 patients, the median time to diagnosis was 36 months from the onset of Raynaud’s phenomenon, and patients consulted a median of 3 physicians first.[12] Only 6.7% of patients who recalled their first physician received the diagnosis at that first visit.[12] Each extra visit before diagnosis is a handoff that did not reach the right specialist.
The second gap is follow-through after diagnosis. At a tertiary systemic sclerosis clinic, baseline lung imaging was completed for 86% of patients and baseline echocardiography for 84%, but only 35% had annual pulmonary function testing.[1] Physical therapy referral reached 37%.[1] Strong first visits followed by weak longitudinal monitoring is a pattern that executives can measure and manage.
The sections below add peer-reviewed evidence to the executive guidance already on this page. They cover diagnostic delay, organ screening, multidisciplinary coordination, regional variation in practice, workforce and decision support, and how patients experience lung evaluation. Each figure comes from the cited study and reflects its own setting, so local data should confirm where the same gaps exist. Leaders can use them to decide which single handoff to fix first.
Current evidence
What the evidence says about delay, organ burden and screening gaps
Delay is common and varies by disease type. In the university clinic cohort, the median interval from first non-Raynaud symptom to diagnosis was 11 months.[12] Patients with limited disease waited longer from Raynaud onset than those with diffuse disease, 44 versus 20 months.[12] Higher educational level and referral by a familiar healthcare professional were independently associated with fewer consultations before diagnosis.[12] In 40 children with juvenile systemic sclerosis at one center, the median diagnostic delay was 12.0 months.[8]
Lung assessment can lag far behind diagnosis. In a Jordanian cohort of 129 adults, high-resolution CT was performed a mean of 6.9 years after diagnosis, which the authors described as delayed assessment.[4] Interstitial lung disease was present in 58.9% of patients, pulmonary arterial hypertension in 27.1%, and lung disease was present in 80% of deaths.[4] The authors warned that delayed imaging may underestimate true incidence and called for early screening and adherence to international guidelines.[4]
Heart involvement is another under-screened domain. A narrative review reported clinically manifest cardiac disease in 15% to 35% of patients, with subclinical dysfunction detectable in about 70% when advanced screening tools are used.[9] The estimated annual incidence of sudden cardiac death ranged from 1.0% to 3.3%.[9] The authors called for early, systematic, risk-stratified screening and dedicated multidisciplinary cardiac teams.[9] Cardiac screening therefore needs an owner in the same way lung screening does.
Screening for pulmonary arterial hypertension is a standard of care that depends on how tests are combined. In 820 patients, an algorithm pairing NT-proBNP of at least 210 ng/L with lung function tests had a sensitivity of 86.75% and a negative predictive value of 99.09% for diagnosis within 12 months.[6] NT-proBNP alone had a sensitivity of 67.05%.[6] Programs choosing a screening protocol are therefore choosing a balance between simplicity and missed cases.
Quality indicators make the follow-through gap concrete. Among 66 patients at a tertiary clinic, follow-up echocardiography after a new decline in diffusing capacity occurred in 36%, and annual skin scoring in 19%.[1] Older age, longer disease duration, diffuse disease and pulmonary hypertension independently predicted lower adherence.[1] The patients at highest risk were the least likely to receive recommended monitoring. That reversal of the usual logic of risk-based care deserves executive attention.
Figure 1
Strong first visits, weak follow-through
Percent of patients whose care met each quality indicator at one tertiary systemic sclerosis clinic. Values are copied from the cited studies [1]; none is estimated.
Data note. All values come from the same cohort and the same set of internationally endorsed quality indicators, so they can be compared with one another; they should not be read as benchmarks for other clinics.
Limitation. A single specialized clinic with 66 patients; adherence elsewhere, especially outside expert centers, may differ.
Figure data (6 rows)
| Measure | Value | Population, setting and year as reported | Source |
|---|---|---|---|
| Baseline high-resolution CT | 86% | 66 patients managed at a tertiary systemic sclerosis clinic, 2016 to 2024 | [1] |
| Baseline echocardiography | 84% | Same cohort; transthoracic echocardiography at baseline | [1] |
| Physical therapy referral | 37% | Same cohort; rehabilitation quality indicator | [1] |
| Follow-up echocardiography after a new decline in diffusing capacity | 36% | Same cohort; longitudinal monitoring indicator | [1] |
| Annual pulmonary function testing | 35% | Same cohort; longitudinal monitoring indicator | [1] |
| Annual modified Rodnan skin score | 19% | Same cohort; longitudinal monitoring indicator | [1] |
Continuum of care
Where coordination breaks between first symptom and long-term monitoring
The route usually starts outside rheumatology. Among patients in the university clinic cohort who recalled their first physician, 35.3% first saw an internist and 23.5% a family physician, with others starting in dermatology or cardiovascular surgery.[12] The authors concluded that greater physician awareness and timely rheumatology referral are essential.[12] For a health system, that means referral criteria must reach the specialties where patients first appear, not only rheumatology.
The next handoff is from diagnosis to organ screening. A CHEST review found strong support for screening every patient for interstitial lung disease with high-resolution CT at diagnosis.[7] It also described emerging evidence for rescreening patients with high-risk features or with new symptoms and physiologic change.[7] The review listed impaired lung function and high skin scores among the features that justify rescreening.[7] That turns screening into a recurring, risk-based process with its own schedule and owner, rather than a single baseline event.
Longitudinal monitoring is where the route most often breaks. The tertiary clinic study found high adherence at baseline but suboptimal follow-up, including dyspnea documentation in 63% and chest auscultation in 27%.[1] The authors identified longitudinal monitoring, documentation and rehabilitation as key targets for quality improvement.[1] Reminder systems, standing orders and shared dashboards are operational tools that address exactly this kind of decay.
Patients see the same pattern. In an international survey of 2,225 people with connective tissue diseases or rheumatoid arthritis, the mean time from that diagnosis to a lung diagnosis was 9.61 years.[2] Among those with systemic sclerosis, 73% recalled chest CT and 87% recalled pulmonary function tests, and lung tests were generally repeated every one to two years.[2] The authors linked mixed experiences to limited clinical guidance and called for better physician awareness and standardized practice.[2]
Monitoring tools can make the continuum easier to sustain. In a prospective study that followed 83 of 131 enrolled patients with both lung ultrasound and CT, the baseline ultrasound score correlated highly with lung disease extent on CT.[11] The authors described ultrasound as a non-invasive, repeatable tool with potential for identifying progression or improvement.[11] Repeatable, lower-burden tests may help clinics keep patients on schedule between imaging studies. Any new tool still needs a defined schedule and an owner who acts on changes.
Figure 3
Why the pathway breaks
People
- First-contact clinicians unfamiliar with early features
- Few rheumatologists working in specialized units
- Rehabilitation and hand therapy roles not engaged
Process
- No standard route from internal medicine or dermatology to rheumatology
- Screening done at baseline but not repeated
- No coordinator for multi-organ follow-up
Technology
- Results from other hospitals hard to interpret
- No reminders for annual lung and heart testing
- Decision-support tools not yet validated externally
Environment
- Long waits for diagnostic tests
- Limited access to high-resolution CT and catheterization
- Patients treated far from expert centers
Policy
- Several guidelines with differing recommendations
- No agreed local screening protocol
- Teaching and non-teaching settings held to different practice
Measurement
- Quality indicators not tracked after baseline
- Time to diagnosis not measured from first symptom
- Adherence not stratified by age, subtype or setting
Unranked qualitative cause-and-effect diagram for the outcome in the box: People with systemic sclerosis are diagnosed late and do not receive recommended organ screening and rehabilitation over time Causes are assembled from the cited literature [1], [3], [4], [7], [10], [12], [13], [14], [15]; 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 | First-contact clinicians unfamiliar with early features; Few rheumatologists working in specialized units; Rehabilitation and hand therapy roles not engaged |
| Process | No standard route from internal medicine or dermatology to rheumatology; Screening done at baseline but not repeated; No coordinator for multi-organ follow-up |
| Technology | Results from other hospitals hard to interpret; No reminders for annual lung and heart testing; Decision-support tools not yet validated externally |
| Environment | Long waits for diagnostic tests; Limited access to high-resolution CT and catheterization; Patients treated far from expert centers |
| Policy | Several guidelines with differing recommendations; No agreed local screening protocol; Teaching and non-teaching settings held to different practice |
| Measurement | Quality indicators not tracked after baseline; Time to diagnosis not measured from first symptom; Adherence not stratified by age, subtype or setting |
Access
Expert centers, test access and the reach of screening
Access in systemic sclerosis is less about a single appointment than about reliable access to a bundle of tests and specialists. UK rheumatologists surveyed about pulmonary arterial hypertension screening most often cited difficulty interpreting results from other hospitals, at 76.0%, and extended wait times for diagnostic tests, at 74.0%.[15] Most agreed that access to key investigations, at 87.0%, would help.[15]
Only 37.0% of those UK respondents worked in specialized systemic sclerosis units.[15] Patients managed outside expert centers therefore depend on referral routes and shared protocols to reach the same standard of screening. Without those routes, the quality of screening depends on where a patient happens to live. The respondents also endorsed multidisciplinary meetings, at 79.5%, as a potential solution.[15]
Regional surveys show how practice varies with resources. Among 394 rheumatologists from 17 Middle East and North Africa countries, 98.73% reported screening for interstitial lung disease and 93.65% for pulmonary arterial hypertension, but only 68.53% screened at the time of diagnosis.[13] The authors attributed discrepancies to variations in clinical training, resource availability and institutional protocols.[13] In Iraq, 88.8% of 116 specialists reported routine lung disease screening, yet only 31% of patients were routinely screened for pulmonary hypertension.[3]
Test selection is also an access decision. In India, 93.7% of surveyed rheumatologists performed chest imaging for lung disease screening, but only 31.4% used high-resolution CT as the screening tool.[14] Echocardiography was common for pulmonary hypertension screening, at 96.4%, while 16.5% reported using right heart catheterization.[14] Where advanced imaging or catheterization is scarce, systems need clear referral agreements so patients can reach confirmatory testing. Agreements should state who orders, who interprets and who tells the patient.
Lower-cost triage tools could widen access if they hold up. A machine learning model built on routine laboratory data from electronic records reached an area under the curve of 0.968 in an independent test set of 158 patients.[10] The authors aimed to optimize the use of diagnostic resources for pulmonary arterial hypertension, though the model was internally validated at one hospital.[10] Executives should treat such tools as candidates for evaluation rather than ready replacements for guideline screening. Any pilot should report how many patients it flags and how many flagged patients complete confirmatory testing.
Executive guidance · System route
Connect the month to an accountable system route.
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 waits longer and who is screened less
Equity in systemic sclerosis care starts with recognizing who is at higher risk. The CHEST review listed male sex, Black race, advanced age, diffuse disease and certain antibody patterns among the risk factors that support rescreening for lung disease.[7] A screening program that treats all patients the same may under-serve those groups, while a risk-based program needs reliable demographic and clinical data to work. Stratifying screening rates by sex, race and age shows whether higher-risk groups are actually rescreened.
Education and familiarity with the system also matter. In the university clinic cohort, higher educational level and referral by a familiar healthcare professional were each associated with fewer consultations before diagnosis.[12] People without those advantages may cycle through more clinicians before reaching a rheumatologist, which argues for referral pathways that do not depend on personal connections. Nurse coordinators or navigators can offer a structured route for patients who lack a clinician contact.
Setting shapes quality. In the Indian survey, baseline skin scoring was performed by 72.2% of rheumatologists at teaching centers compared with 38.4% at non-teaching hospitals.[14] Six-minute walk testing showed a similar pattern, at 79.5% versus 64.7%.[14] The survey had a response rate of 70.5%.[14] Patients treated outside academic settings may receive a narrower assessment, so partnerships between community and expert centers are an equity measure.
Disease burden in understudied populations is high. In the first descriptive study of systemic sclerosis in Jordan, 49.1% of 57 patients had digital ulcers, 77.2% had microstomia, and 28.1% had pulmonary arterial hypertension.[5] Physical and mental quality-of-life scores were similarly impaired across disease subtypes.[5] The authors highlighted a significant burden of organ involvement, comorbidities and functional disability in this population.[5] Services in regions with little published data may not know the scale of local need until they measure it.
Children face their own gaps. In the juvenile cohort, gastrointestinal involvement was detected in 82.5% and interstitial lung disease in 37.5%.[8] The authors noted that male patients may be at risk of more severe microvascular changes, possibly related to diagnostic delay, and called for prospective multicenter studies.[8] Pediatric services need the same screening discipline as adult clinics, adapted to a smaller and more dispersed patient group. A planned transition from pediatric to adult care is part of the same route.
Human infrastructure
The teams that hold a multi-organ disease together
Systemic sclerosis care depends on a network of specialists: rheumatologists, pulmonologists, cardiologists, gastroenterologists, radiologists, physical and occupational therapists, nurses and coordinators. No single clinician can monitor every organ, so the workforce question is how these roles share responsibility for one patient over many years. Each role needs a defined scope and a clear handoff to the next.
Multidisciplinary collaboration is widely reported but unevenly realized. In Iraq, 89.3% of specialists reported multidisciplinary collaboration, yet variability in screening and treatment suggested inconsistent guideline adherence.[3] The authors called for standardized protocols and stronger multidisciplinary collaboration.[3] Collaboration that exists informally may not produce reliable screening without shared rules and a named coordinator. In the Middle East and North Africa survey, screening practice differed by the number of patients seen per year and by background training.[13]
Clinician education is a recurring need. UK rheumatologists rated ongoing clinician education, at 82.0%, and a better understanding of screening algorithms, at 79.5%, as potential solutions to screening barriers.[15] Use of established tools was incomplete: 60.0% of UK respondents and 26.14% of Middle East and North Africa respondents reported using the DETECT algorithm for pulmonary hypertension screening.[15][13] Training investments can target that gap directly.
Rehabilitation roles are among the most often missed. Physical therapy referral reached only 37% of patients in the tertiary clinic, even though rehabilitation is part of the quality indicator set.[1] The Jordanian study measured hand disability with the Cochin Hand Function Scale alongside quality of life.[5] Function belongs in routine assessment. Systems that track therapy referral as a quality measure can see where hand and functional support falls short. Occupational therapy for hand function can be tracked the same way.
Specialist teams for specific organs are a further step. The cardiac review called for dedicated multidisciplinary cardiac teams for systemic sclerosis, given the frequency of subclinical heart involvement.[9] The machine learning study framed its model as support for clinical decision-making and better use of diagnostic resources.[10] Decision support may extend a small specialist workforce, but it still depends on clinicians who know when to act on a flag. Executives can ask whether each role in the network has the time, training and data access to do its part.
Executive guidance · Operating dashboard
Review reliability, not campaign activity alone.
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
Transfer responsibility with acknowledgment and visibility.
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
Connect operating signals to accountable executive review.
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 coordinated systemic sclerosis care
| Control point | Risk if missing | Owner | Evidence of control |
|---|---|---|---|
| Referral criteria shared with internal medicine, family medicine and dermatology | Patients see several clinicians before diagnosis | Chief medical officer with rheumatology lead | Median number of pre-referral visits and time to rheumatology |
| Baseline organ screening bundle at diagnosis | Lung and heart involvement detected years late | Rheumatology clinic director | Share of new patients with baseline CT, lung function and echocardiography |
| Recall system for annual lung function and pulmonary hypertension screening | Monitoring decays after the first year | Clinic operations manager | Annual testing rates by patient group |
| Single local screening protocol | Conflicting guideline use and variable practice | Rheumatology and pulmonary service line leaders | Approved protocol reviewed annually |
| Shared results and standard reports across hospitals | Tests repeated or ignored because results came from elsewhere | Health information management lead | Share of external results available in the record |
| Physical and occupational therapy referral pathway | Hand and functional needs go unaddressed | Rehabilitation services director | Therapy referral rate for patients with systemic sclerosis |
| Multidisciplinary case review for complex patients | Organ-specific decisions made in isolation | Multidisciplinary clinic coordinator | Share of complex cases reviewed jointly |
Control points derived from the cited evidence [1], [3], [7], [12], [13], [15] 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
Communicating about scleroderma so patients and clinicians act sooner
Communication in systemic sclerosis has two audiences: clinicians who may see the first symptoms, and patients who must stay engaged with years of screening. The university clinic cohort showed that patients often pass through several specialties before diagnosis.[12] That makes awareness among internists, family physicians and dermatologists a practical target. Messages for clinicians should name early features and give a clear route to rheumatology.
Patients already value screening. In the international survey, 87% of respondents rated lung screening and evaluations as important, and 70% reported having had lung evaluations, most often as a routine status check.[2] The authors suggested that this positive attitude could be leveraged to ensure regular, proactive screening.[2] Communication that explains why tests repeat, and who will follow up on results, can turn that willingness into adherence. Reminder letters and portal messages are simple ways to carry that explanation between visits.
Information sharing between providers is part of communication too. Difficulty interpreting results from other hospitals was the most reported barrier among UK rheumatologists.[15] The authors recommended sharing information between centers and integrating care services.[15] Standard report formats and shared records reduce the risk that a patient’s test is repeated or ignored because it came from somewhere else. Patients also benefit when they can see their own results and know which team acts on them.
Clinical guidance itself can confuse. The CHEST review noted that three recent clinical practice guidelines offer distinct and sometimes contrasting views on treating lung disease in systemic sclerosis.[7] The review aimed to show how to apply those guidelines in practice, beginning with screening and extending to treatment decisions.[7] Health systems can reduce that confusion by agreeing on one local protocol and explaining it consistently to patients. Patients who hear different advice from different specialists may lose confidence in all of it.
Awareness month messages should stay within what the organization can deliver. If the system promotes early recognition, it should be ready to see referred patients promptly and to schedule baseline and repeat screening. The quality indicator study showed that baseline adherence can be high while longitudinal care drifts.[1] Public messages should emphasize ongoing care rather than a single visit. Messages can also point patients to the specialists involved in their care, so they know where to ask about lungs, heart, gut or hands.
Executive guidance · 90-day plan
Use 90 days to correct one visible operating barrier.
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 National Scleroderma Awareness Month 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 National Scleroderma Awareness Month 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
Pair recognition with a system people can trust.
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
Connect the message to one usable, measured, and sustained operating change.
Executive action kit · Month observance
Turn National Scleroderma Awareness Month into accountable action.
Move from recognition activity to a visible operating route with named owners and closed loops.
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 National Scleroderma Awareness Month, 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
National Scleroderma Awareness Month 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.Aboabat A, Al-Hammad A, Alhussin A, AlQutub S, Almaghlouth I, Alrajhi N, et al. Real-World Adherence to Systemic Sclerosis Quality Indicators: A Single-Center Quality of Care Study. The Journal of Rheumatology. 2026:jrheum.2025-1244. https://doi.org/10.3899/jrheum.2025-1244
- 2.Distler O, Antonopoulou K, Galetti I, Wheatley MJ, Aggarwal R, Allanore Y, et al. Patient reports of evaluations for interstitial lung disease in patients with connective tissue diseases and rheumatoid arthritis: an international survey. Respiratory Research. 2026;27(1):383. https://doi.org/10.1186/s12931-026-03795-z
- 3.Ridha AA, Awadh NI, Gorial FI, Jassim N. Screening and management of systemic sclerosis-associated pulmonary complications in Iraq: insights from a national survey of rheumatologists and pulmonologists. Rheumatology. 2026;64(3):209-217. https://doi.org/10.5114/reum/215233
- 4.Alnaimat F, Al-Halaseh S, Ismail O, Fateh M, Allouzi S, Almallah A, et al. Identifying predictors of systemic sclerosis-associated interstitial lung disease. Medicine. 2026;105(34):e50368. https://doi.org/10.1097/md.0000000000050368
- 5.Alnaimat F, Al-Halaseh S, AlSamhori JF, Hanandeh S, Shamaileh J. Characterisation of Systemic Sclerosis in a Jordanian Cohort: Clinical Features, Diagnostic Patterns, and Health-Related Quality of Life. Mediterranean Journal of Rheumatology. 2026;37(3):562-574. https://doi.org/10.31138/mjr.140326.jcs
- 6.Brown Z, Hansen D, Ross L, Stevens W, Morrisroe K, Quinlivan A, et al. Predictive Accuracy of Serum N-Terminal Pro-B-Type Natriuretic Peptide Alone and in Combination with Respiratory Function Tests to Identify Systemic Sclerosis-Associated Pulmonary Arterial Hypertension (SSc-PAH). Diagnostics. 2026;16(14):2254. https://doi.org/10.3390/diagnostics16142254
- 7.Esposito AJ, Selvan KC, Richardson C, Khanna D, Bemiss BC, Bernstein EJ, et al. Systemic Sclerosis-Associated Interstitial Lung Disease. CHEST. 2026;170(4):1138-1151. https://doi.org/10.1016/j.chest.2025.11.047
- 8.Osminina M, Podzolkova V, Berezhanskiy P, Podchernyaeva N, Volnukhin V, Ermolinskiy P, et al. Juvenile Systemic Sclerosis in a Single Center: Clinical Features, Capillaroscopic Findings, Immunological Profile, and Treatment Outcomes—A Retrospective Descriptive Analysis. Children. 2026;13(9):1269. https://doi.org/10.3390/children13091269
- 9.Barile R, Rotondo C, Giancaspro G, Rella V, Cantatore FP, Corrado A. Heart involvements in systemic sclerosis beyond pulmonary hypertension: From conduction, rhythm and function defects to coronary artery disease. La Revue de Médecine Interne. 2026;47(9):500-508. https://doi.org/10.1016/j.revmed.2026.06.005
- 10.Zhang Y, Feng S, Zhang Y, Luo J. Development and internal validation of an interpretable machine learning model using routine laboratory data for systemic sclerosis-associated pulmonary arterial hypertension. Rheumatology International. 2026;46(8):213. https://doi.org/10.1007/s00296-026-06255-5
- 11.Cao C, Chen J, Wang Y, Liu X, Li S, Zhang J, et al. Lung ultrasound versus high-resolution computed tomography in the longitudinal monitoring of interstitial lung disease: a prospective cohort study in systemic sclerosis. Seminars in Arthritis and Rheumatism. 2026;81:153069. https://doi.org/10.1016/j.semarthrit.2026.153069
- 12.Erez Y, Kenar Artın G, Yarkan Tugsal H, Sen G, Onen F, Birlik M. Factors associated with diagnostic delay and specialty consultation patterns in systemic sclerosis: A cross-sectional study. Rheumatology International. 2025;45(12):278. https://doi.org/10.1007/s00296-025-06034-8
- 13.Namas R, Qassimi SA, Alameri J, Emadi SA, Ziade N, Almarzooqi A, et al. Interstitial Lung Disease and Pulmonary Arterial Hypertension Screening Practices in Systemic Sclerosis: Survey Insights of Rheumatologists in the Middle East and North Africa Region. Mediterranean Journal of Rheumatology. 2025;36(3):392. https://doi.org/10.31138/mjr.211224.alf
- 14.Das AC, Sakthivel Y, Shenoy P, Sircar G, Mamadapur M, Buche AS, et al. Evaluation and prescription trends in systemic sclerosis: Report of a survey among Indian rheumatologists. Journal of Scleroderma and Related Disorders. 2025;10(3):322-331. https://doi.org/10.1177/23971983251328797
- 15.Álvarez-Hernández MP, Allanore Y, Andrade I, Buch MH, Coghlan G, Del Galdo F, et al. Attitudes and barriers to pulmonary arterial hypertension screening in systemic sclerosis patients: A survey of UK-based rheumatologists. Journal of Scleroderma and Related Disorders. 2024;9(2):99-109. https://doi.org/10.1177/23971983241235708
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 |
|---|---|---|---|---|
| Diagnostic delay and pre-diagnosis consultation patterns | [12] [8] | 2026, 2025 | Current evidence | Single-center cohorts relying partly on patient recall; pediatric cohort is small. |
| Delayed lung assessment and organ burden | [4] [5] [7] | 2026 | Current evidence | Retrospective and cross-sectional single-country cohorts; review summarizes heterogeneous evidence. |
| Cardiac involvement and screening | [9] | 2026 | Current evidence | Narrative review with wide ranges drawn from varied screening methods. |
| Pulmonary arterial hypertension screening accuracy | [6] [10] | 2026 | Current evidence | Single accuracy study and an internally validated single-hospital model. |
| Baseline versus longitudinal quality indicator adherence | [1] | 2026 | Continuum of care | 66 patients at one tertiary clinic; retrospective chart-based assessment. |
| Patient-reported lung evaluation experience | [2] | 2026 | Continuum of care | Self-reported online survey across several connective tissue diseases. |
| Lower-burden lung monitoring | [11] | 2026 | Continuum of care | Single-center prospective study with incomplete follow-up. |
| Regional variation in screening practice and barriers | [3] [13] [14] [15] | 2026, 2025, 2024 | Access | Clinician surveys with self-reported practices and varied response rates. |
About the author
Greg Wahlstrom
MBAHCM
President and Chief Executive Officer, The Healthcare Executive
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