Patient Perspectives on Delayed Specialty Follow-Up After a Primary Care Visit
==============================================================================

* Leonor Fernández
* Dru Ricci
* Amie Pollack
* Maelys J. Amat
* Meghan Drielak
* Talya Salant
* Gordon D. Schiff
* Umber Shafiq
* Scot B. Sternberg
* James Benneyan
* Mark Aronson
* Erin Sullivan
* Russell S. Phillips

## Abstract

*Background:* Patients are often referred for important diagnostic tests or consultations after a concerning symptom or finding is identified at a primary care visit, but many referrals are delayed or not completed.

*Methods:* In this qualitative study, we reviewed electronic health record data to identify patients who did not have timely completion of a recommended referral at an academic primary care hospital-based practice and an affiliated community health center. Using semistructured interview guides, we interviewed 15 patients who did not complete a cardiac stress test within 28 days of a primary care visit associated with a diagnosis of chest pain, and 15 patients who did not complete a dermatology referral within 90 days of identification of a concerning skin lesion.

*Results:* Thematic analysis highlighted 3 areas: 1) Patients desired clear communication to inform, equip and empower them, 2) Clinician-patient communication regarding a referral’s rationale and value is key, and 3) Referral appointment processes were often challenging and/or delayed. Patients wished to understand why they were being referred, the specific value and reason for the referral, and what to expect. We developed a conceptual model describing how the initial clinician-patient communication may influence referral completion.

*Conclusions:* Failure to close diagnostic loops may be more likely when a patient is not given sufficient meaningful information, particularly if there is health system “friction” that reduces the patient’s ability and ease to obtain a timely diagnostic referral appointment. Clinicians should use accessible language to communicate why a diagnostic referral is useful and important for the patient’s health, and include a specific optimal time frame. The initial communication and the ease of the subsequent appointment booking both matter, and may compound or mitigate each other’s effect. To reduce diagnostic referral failures and delays. clinicians should advocate for consistent appointment booking processes that systematically inform, equip, and empower patients with clear and meaningful referral information and timely appointments.

*   Communication
*   Continuity of Patient Care
*   Diagnostic Errors
*   Diagnostic Tests
*   Doctor-Patient Relations
*   Health Disparities
*   Health Education
*   Health Literacy
*   Patient Care Team
*   Patient-Centered Care
*   Patient Engagement
*   Patient Safety
*   Practice-Based Research
*   Primary Health Care
*   Process Measures
*   Qualitative Research
*   Quality Improvement
*   Quality of Care
*   Referral, Risk Assessment
*   Shared Decision-Making

## Introduction

Patients often are referred for diagnostic tests or consultations after a concerning symptom or finding is identified at a primary care visit. Diagnostic errors, defined as failures to establish an accurate and timely explanation for a patient's health or communicate that explanation to the patient, affect an estimated 12 million patients annually in the US.1,2 Many diagnostic errors emerge as a result of failure to “close a diagnostic loop,” when a diagnostic test or specialty referral is ordered, but delayed or not completed.3⇓–5,6 Many factors are known to play a role in a patient’s likelihood to complete screening and specialty referrals, including wait times, distance,7 trust in physicians/health care system, insurance and income,8 type of practice,8 bias,9–11 health literacy and preferred language,12 and staff shortages.7,13

We sought to explore how patients whose diagnostic referral was delayed or not completed experienced the referral process.14,15 We hypothesized that the initial clinician-patient communication informs a patient’s path to pursue the steps required for a timely referral and may influence patient motivation.16–19 Exploring patient experiences of delayed diagnostic evaluation is essential to the design of systems that achieve better quality and safety.

## Methods

### Study Design

The study was conducted at 2 primary care clinics affiliated with a large academic medical center in the Northeast US We reviewed electronic medical record data to identify all patients with delayed or never completed referral orders for dermatology or cardiology as follows:

1) Dermatology referral for a skin lesion identified by a primary care clinician as specifically concerning for melanoma or other high-risk skin cancer, and 2) Cardiac stress test ordered after a primary care visit for chest pain. With input from patient advisors, we designed semistructured patient interview guides (Appendix) to understand these “open” loops, focusing questions on 3 areas: 1) Referral communication; 2) The process of arranging the referral appointment; and 3) Overall barriers and facilitators.

### Study Participants, Setting, and Recruitment

Patients received care in 1 of 2 adult primary care clinics: an academic hospital-based clinic and a hospital-affiliated community health center. Staff physicians were mostly internists and a few family physicians. Time frames for closed loops were based on clinical consensus with specialists.

We identified 2 groups with open loops: 

1.  Dermatology referrals: Patients with a primary care order for urgent dermatology consultation for a concerning lesion, with no completed appointment in hospital system within 90 days.

2.  Cardiac stress test referrals: Patients who had a primary care visit with a diagnosis of chest pain (ICD-10 codes R07.9, R07.1, R07.89) with a primary care clinician order for an exercise or chemical stress test with no completed test in hospital system within 28 days.

We obtained consent to contact each patient from their primary care physician. We excluded patients who spoke a language other than English or Spanish. Patients were invited via letter, offered a gift card for participation, and randomly selected for additional phone outreach.

### Data Collection and Analysis (See Appendix for Additional Details)

Individual telephone interviews were conducted July to November 2022 (DR, MA, LF); they were recorded and transcribed using Zoom or MS Word and deidentified. Spanish interviews were conducted by a bilingual clinician and professionally translated. Our initial codebook was developed deductively, based on the literature. Using NVivo12 software, we coded transcripts to explore key themes regarding referral communication and processes.20 The core research team reviewed several transcripts and iteratively added and modified codes, reaching consensus for a finalized codebook. One researcher coded all 30 interviews. A second, blinded coder independently reviewed 20% of the transcripts (reliability kappa 0.89, see Appendix.) Emergent themes were developed and discussed iteratively by the research team and used to develop a conceptual framework.

## Results

We identified 162 patients with delayed or not-completed dermatology referrals, and 143 patients with delayed or not completed stress tests (Table 1) and interviewed 30 subjects from the 2 groups (Table 2) whose preferred spoken language was English or Spanish (Figure 1). (Only 1 was from CHC). (Figure 1 and Table 2.) Thematic analysis of interviews highlighted that: 1) Clear communication equips and empowers patients as they negotiate referrals 2) Clinician-patient communication about the referral is key, especially regarding its rationale 3) Referral appointment processes were often challenging and delayed. Domains and Themes are summarized in Table 3.

![Figure 1.](http://www.jabfm.org/https://www.jabfm.org/content/jabfp/early/2025/04/22/jabfm.2024.240063R3/F1.medium.gif)

[Figure 1.](http://www.jabfm.org/content/early/2025/04/22/jabfm.2024.240063R3/F1)

Figure 1. 
Qualitative interview enrollment flow chart.

View this table:
[Table 1.](http://www.jabfm.org/content/early/2025/04/22/jabfm.2024.240063R3/T1)

Table 1. 
Demographics of Patients with Dermatology and Stress Test Referral Open Loops * (Total n = 305)

View this table:
[Table 2.](http://www.jabfm.org/content/early/2025/04/22/jabfm.2024.240063R3/T2)

Table 2. 
Demographics of Interviewed Patients (Recruited from Patients with Open Loops)

View this table:
[Table 3.](http://www.jabfm.org/content/early/2025/04/22/jabfm.2024.240063R3/T3)

Table 3. 
Domains, Major Themes, and Representative Quotes Regarding Diagnostic Referrals

### Cross-Cutting Theme of Clear Communication as Empowering

A dominant theme was that patients wanted to be better equipped to navigate a diagnostic referral by having clear meaningful information: understanding more would help them feel in control, less anxious, and more empowered. Most wanted more practical information regarding what to expect and understand health information better with use of “regular” language.

### The Importance of the Initial Clinician-Patient Communication

Patients generally “agreed” with being referred. They understood that the clinician was seeking additional information for a more definitive diagnosis, but some did not know the specific diagnoses being considered, for example, that concern about skin cancer motivated the dermatology referral. Many wanted more transparency about risks. Some were unfamiliar with medical terms and jargon, such as “stress” test.

Patients reported some uncertainty surrounding the urgency or recommended time frame for the referral. Some inferred nonurgency because the test was not booked immediately. Some believed a referral was no longer necessary if symptoms resolved. A few recalled feeling anxiety about potentially serious diagnoses and delays. Many described strong and trusting relationships with their primary care doctor. Several expressed less trust in health system reliability.

### Challenges Related to Arranging a Referral Appointment

The process of scheduling appointments was described as challenging, and delays were universal. Patients reported long call holds and limited appointments. On concluding primary care visits, many were given multiple and variable instructions: some tasks required them to initiate a call, and others to await one, causing uncertainty. Remembering to call was difficult for some, some were “not contacted,” and “life got in the way.” Some said the health system seemed overburdened and unreliable.

### Referral Conceptual Model

Based on literature21,22 and our findings, we developed a conceptual model (Figure 2). Patients “construct” meaning from what they hear in the initial communication through a lens that is affected by their broader context, the relationship with their clinician, and health literacy. They interpret and construct meaning and valence for the referral, which informs their behavior as they confront barriers. When a clinician shares the referral rationale in empathic and clear language, explores concerns, and explains risks and benefits (A), the patient is more equipped and motivated to persist through subsequent difficulties (B). Conversely, a poor explanation combined with a difficult appointment-booking system may result in an open loop (C).

![Figure 2.](http://www.jabfm.org/https://www.jabfm.org/content/jabfp/early/2025/04/22/jabfm.2024.240063R3/F2.medium.gif)

[Figure 2.](http://www.jabfm.org/content/early/2025/04/22/jabfm.2024.240063R3/F2)

Figure 2. 
Conceptual model for patient experience of diagnostic referral communication.

## Discussion

This qualitative study highlights the importance of empowering patients with clear communication regarding a diagnostic referral’s rationale and how to schedule it. Patients may not always receive meaningful information as they weigh a referral’s priority. While most understood there was diagnostic uncertainty, some were unsure how a timely referral might matter, which may impact their decision to pursue it. Studies about decisional conflict show that enabling decision making is heavily dependent on feeling informed, certain, and supported, and being clear about one’s values to feel like an effective decision is being made.21,22

Our findings have implications for future interventions and should be considered in the broader context of systems design, engineering and improvement.23–26 Patients need to know what the stakes are. Indeed, the initial communication is key: the clinician is uniquely positioned to help the patient interpret the “value” of the referral. But the current approach to referrals relies too heavily on a busy clinician who may not always sufficiently explain the rationale, and the patient may not recall the details.16 In addition, clinicians may not know the logistics and availability for all referrals. Completion rates may improve by creating referral processes that reliably equip the patient with main reason for referral, level of urgency and recommended time frame, how to book, and what to expect. In addition, easier booking, self-scheduling, appointment assistance and reminders may help. Finally, enabling more patients to access their notes may remind some why they were referred and thereby improve completion.14 Future studies should explore clinician perspectives, and how patients weigh referrals against other priorities.

This study took place during the COVID-19 pandemic era, influencing patient experiences. All had open loops; volunteer bias may have influenced responses. Most interviewed patients were from a single clinic. Patients with less education, who speak other languages, or who identify as Black were less represented in dermatology interviews. Timing of interviews potentially limited recall, and were only in English and Spanish.

## Conclusion

Among patients who experienced failure to close a timely diagnostic loop in dermatology or cardiac stress testing, most wished for better communication and easier appointment booking. Diagnostic loop failure may be more likely when a patient is not given sufficient meaningful information, particularly if there is health system “friction” that impairs the patient’s ability to complete a referral.18⇓⇓–21 Clinicians should use accessible language to communicate why a diagnostic referral is useful and important for the patient’s health, and include a specific optimal time frame. The initial communication and the ease of the subsequent appointment booking both matter, and may compound or mitigate each other’s effect. To reduce diagnostic referral failures and delays. clinicians should advocate for consistent appointment booking processes that systematically inform, equip, and empower patients with clear and meaningful referral information and timely appointments.

## Acknowledgments

We extend our gratitude to Young-Jin Sohn for his contributions to transcript coding and to Maria Rivera as patient advisor. We also acknowledge Sara Singer, PhD, who contributed to concept generation and review of the manuscript.

## Appendix

![Figure3](http://www.jabfm.org/https://www.jabfm.org/content/jabfp/early/2025/04/22/jabfm.2024.240063R3/F3.medium.gif)

[Figure3](http://www.jabfm.org/content/early/2025/04/22/jabfm.2024.240063R3/F3)

![Figure4](http://www.jabfm.org/https://www.jabfm.org/content/jabfp/early/2025/04/22/jabfm.2024.240063R3/F4.medium.gif)

[Figure4](http://www.jabfm.org/content/early/2025/04/22/jabfm.2024.240063R3/F4)

![Figure5](http://www.jabfm.org/https://www.jabfm.org/content/jabfp/early/2025/04/22/jabfm.2024.240063R3/F5.medium.gif)

[Figure5](http://www.jabfm.org/content/early/2025/04/22/jabfm.2024.240063R3/F5)

![Figure6](http://www.jabfm.org/https://www.jabfm.org/content/jabfp/early/2025/04/22/jabfm.2024.240063R3/F6.medium.gif)

[Figure6](http://www.jabfm.org/content/early/2025/04/22/jabfm.2024.240063R3/F6)

![Figure7](http://www.jabfm.org/https://www.jabfm.org/content/jabfp/early/2025/04/22/jabfm.2024.240063R3/F7.medium.gif)

[Figure7](http://www.jabfm.org/content/early/2025/04/22/jabfm.2024.240063R3/F7)

![Figure8](http://www.jabfm.org/https://www.jabfm.org/content/jabfp/early/2025/04/22/jabfm.2024.240063R3/F8.medium.gif)

[Figure8](http://www.jabfm.org/content/early/2025/04/22/jabfm.2024.240063R3/F8)

![Figure9](http://www.jabfm.org/https://www.jabfm.org/content/jabfp/early/2025/04/22/jabfm.2024.240063R3/F9.medium.gif)

[Figure9](http://www.jabfm.org/content/early/2025/04/22/jabfm.2024.240063R3/F9)

## Notes

*   This article was externally peer reviewed.

*   This is the Ahead of Print version of the article.

*   *Funding:* The authors received funding from AHRQ R18-5R18HS027282.

*   (*co-senior authors).

*   *Conflict of interest:* None.

*   *IRB Protocol:* IRB19-1376 and 2020P000502/20 and IRB19-1376.

*   To see this article online, please go to: [http://jabfm.org/content/00/00/000.full](http://jabfm.org/content/00/00/000.full).

*   Received for publication February 13, 2024.
*   Revision received May 21, 2024.
*   Revision received July 2, 2024.
*   Revision received August 6, 2024.
*   Accepted for publication August 19, 2024.

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