{"paper_id":"8c6082cd-5a81-4352-8b33-731f4929cc3b","body_text":"Invisible illnesses (e.g., fibromyalgia, disorders of gut-brain interaction, and myalgic encephalomyelitis/chronic fatigue syndrome) are clinical syndromes that are not readily visible or measurable by physical exam or diagnostic testing, and the patient outwardly appears healthy [ 1 ]. Invisible illnesses are common; however, both patients and physicians, including trainees, report dissatisfaction with clinical encounters [ 2 - 8 ]. Patients often feel dismissed, while physicians often feel helpless [ 2 - 8 ]. Communication strategies are helpful in improving patient-physician relationships, patient and physician satisfaction, and patient outcomes, including pain, function, and quality of life [ 9 - 12 ]. Despite these benefits, communication strategies when working with patients with invisible illnesses are infrequently taught across all levels of medical education [ 8 , 13 - 18 ].\nTo our knowledge, invisible illness communication strategies have not been explicitly studied as a unified construct; however, related work exists within the literature addressing specific invisible illnesses, functional syndromes, noncancer pain, medically unexplained symptoms, and persistent physical symptoms. A recent study found that only 17% of residents felt confident or very confident in assessing chronic, noncancer pain, and 36% of residents rated their preparation for treating chronic, noncancer pain during residency as fair or poor [ 15 ]. Moreover, only 52% of residents reported that they frequently or very frequently believe reports of pain from patients with fibromyalgia [ 15 ]. A qualitative study found medical students and residents frequently described managing chronic pain as challenging and unrewarding, felt unsure about how to provide care, and identified a hidden curriculum suggesting patients with chronic pain have little educational value [ 4 ]. Chronic nociplastic pain, or central pain sensitization, is common in many invisible illnesses; however, invisible illness does not necessarily involve pain and may instead present with other debilitating symptoms such as fatigue, autonomic dysfunction, sleep difficulty, mood disturbances, or cognitive impairment (“brain fog”). A qualitative study exploring junior doctors’ knowledge and experience with medically unexplained symptoms found that junior doctors reported a substantial gap in training, negative attitudes of supervising doctors, and high levels of uncertainty, anxiety, and frustration regarding medically unexplained symptoms [ 17 ]. Similarly, another qualitative study exploring medical students’ perceptions of myalgic encephalomyelitis/chronic fatigue syndrome found no formal training, low levels of knowledge, and negative attitudes of supervising doctors [ 18 ].\nAlthough invisible illnesses represent disparate medical conditions, patients report common patient-physician relationship issues across invisible illnesses. A systematic meta-synthesis examining 151 qualitative reports, including patients with Ehlers-Danlos syndrome, endometriosis, fibromyalgia, Gulf War syndrome, irritable bowel syndrome, long COVID, multiple chemical sensitivity, myalgic encephalomyelitis/chronic fatigue syndrome, postural orthostatic tachycardia syndrome, systemic lupus erythematosus, and vulvodynia, highlights the frequent invalidation, dismissal, or minimization of patient concerns and the subsequent negative consequences [ 19 ]. A qualitative study of 17 patient focus groups that included patients with over 10 types of chronic pain found that participants frequently reported negative experiences with their provider [ 5 ]. Issues included provider mistrust regarding patients’ reports of pain, providers accusing the patient of drug-seeking or of overexaggerating their symptoms, and providers not spending enough time with the patient. Participants also identified feeling undeserving of care and that they received lower quality care [ 5 ]. A narrative review examining patient perspectives in patients with encephalomyelitis/chronic fatigue syndrome found many of the same themes: frequent dissatisfaction with medical encounters, low-quality medical care, skepticism or minimization of complaints, physician reluctance to perform diagnostic testing, attribution of symptoms to mental health disorders, and lack of support [ 20 ]. Given the common challenges invisible illnesses present, including the subjective nature of complaints and subsequent patient-physician mutual mistrust, difficult-to-treat symptoms, prior negative patient experiences, and psychological stigma and shame, we believe invisible illness communication strategies can be approached as a unified construct [ 5 , 19 - 25 ].\nNegative physician attitudes, lack of knowledge, and inadequate communication skills perpetuate pain invalidation, strain the patient-physician relationship, and are associated with negative patient outcomes, including increased pain, threats to moral integrity, impaired psychological and physical functioning, and reduced quality of life [ 26 , 27 ]. Furthermore, the combination of inadequate skills and the challenging nature of chronic pain can contribute to physician burnout [ 28 ]. Medical educators and professional organizations highlight the importance of bolstering chronic pain and medically unexplained symptom education [ 8 , 13 , 16 , 17 , 29 , 30 ], including communication skills [ 4 , 13 , 16 , 29 ]. Despite these calls to action, systematic reviews examining medical education curricula found that pain medicine and medically unexplained symptom curricula were inadequate [ 8 , 14 , 29 , 30 ]. Additionally, within these curricula, the most common topics were physiology, anatomy, and pharmacology, with little attention to communication skills [ 8 , 14 , 29 , 30 ].\nStudy objectives\nAs an initial step toward addressing this education gap, we developed a one-hour invisible illness communication strategy curriculum featuring a novel framework (the 5 Es). The primary objective of the curriculum was to increase participants’ comfort using a communication framework when working with patients with an invisible illness that facilitates a positive patient-physician relationship. A secondary objective was to increase participants’ confidence and sense of professional fulfillment when working with patients with invisible illnesses. We aimed to evaluate the invisible illness communication strategy curriculum with a pre-post survey design. Specific elements we examined included attitudes regarding invisible illness, acceptability of the curriculum, impact on comfort levels across various communication skills, specific helpful elements of the curriculum, and areas for improvement.\n\nSetting and participants\nThe invisible illness communication strategy curriculum was delivered monthly during the 2024-2025 academic year by a single faculty member (RV) to small groups of approximately three to six internal medicine (IM) interns from a single academic institution during a one-hour ambulatory didactic session. No other faculty members delivered the curriculum. A total of 53 IM interns were eligible; however, only 35 IM interns participated in the curriculum. The 18 IM interns who did not participate in the curriculum had excused absences such as vacation and illness. We aimed to create a safe, open learning environment by normalizing the challenging nature of invisible illness and sharing personal experiences. The learning environment was also low stakes, as there were no formal or informal assessments tied to this curriculum.\nProgram description\nThe curriculum draws on elements of constructivism and reflective pedagogy [ 31 ]. The curriculum begins with a brief overview of invisible illness and a case-based discussion regarding a patient with a disorder of gut-brain interaction, which highlights common patient and provider challenges in invisible illness care. Next, the curriculum reviews the literature regarding the negative effects of pain invalidation and the positive effects of empathetic, patient-centered communication [ 10 - 12 , 19 - 30 ]. The 5 Es communication framework (Evaluate, Empathize and validate, Educate, set Expectations, and Engage in care) is introduced in the context of the patient journey. Evaluate & empathize and validate are emphasized during the diagnostic phase; educate and set expectations during diagnosis delivery and discussion; and engage in care during ongoing management. The framework highlights active listening, validation, patient education, focusing on functional outcomes, setting realistic goals, and using shared decision-making when creating a treatment plan. The curriculum explores how to discuss normal test results while still validating the seriousness and severity of symptoms. Additionally, the curriculum highlights how to discuss the importance of addressing mental health as part of the treatment plan while not attributing symptoms to mental health disorders. Appendix 1 presents a facilitator guide that includes key concepts, sample phrasing for each communication skill, and suggested responses to challenging patient statements that were also provided to participants as a take-home handout. Interns then practice applying the framework to the case, followed by questions and/or group discussion.\nThe 5 Es framework is an original, evidence-based framework developed from a review of communication literature, expert opinion, and patient feedback [ 2 , 9 , 12 , 28 , 32 - 37 ]. The 5 Es framework was initially developed by one author, RV, based on a review of the literature and patient feedback regarding a novel fibromyalgia clinic [ 37 ]. The framework was further refined through discussion with an expert in fibromyalgia, JK, and discussion and presentation to peers at a national conference who see patients with various invisible illnesses.\nProgram evaluation\nAll interns who participated in the curriculum were invited to complete anonymous, paired pre- and post-surveys. There were no incentives for participation in the surveys. Pre- and post-surveys were developed de novo for this curriculum (Appendix 2). Surveys were piloted with two additional faculty members with expertise in invisible illness and survey development to assess clarity, content, and face validity; however, there was no further psychometric validation. Surveys were completed via paper and pencil. Surveys were anonymous, and participants were asked to pair their surveys by stapling them together. Survey responses were transcribed into Microsoft Excel (Microsoft Corporation, Redmond, WA). Survey questions included demographics, attitudes regarding invisible illness, and comfort levels with various communication skills rated on a Likert scale (1 = strongly disagree, 2 = disagree, 3 = neutral, 4 = agree, 5 = strongly agree). Interns also rated the overall quality of the curriculum (1 = very poor, 2 = poor, 3 = average, 4 = good, 5 = excellent). Free-response items inquired about helpful aspects of the curriculum and areas for improvement. Descriptive statistics were generated for all variables. As this was a small, hypothesis‑generating study, all analyses were considered exploratory. Likert‑scale responses were treated as approximately continuous, as distributions were not markedly skewed, and pre‑ and post‑survey differences were analyzed using paired t‑tests with a two‑sided α = 0.05. Given the exploratory nature of the evaluation, no adjustments were made for multiple comparisons, and interpretation focused on the magnitude of effect sizes. Effect sizes were calculated using Cohen’s dᶻ for paired samples. Statistical analysis was conducted using Stata version 18 (StataCorp, College Station, TX). The study was reviewed by the University of Pittsburgh Institutional Review Board and determined to be exempt.\n\nAll interns who participated in the curriculum completed pre- and post-surveys (35/35, 100% response rate). Most interns were 25-29 years old (30/35, 86%), were planning on a subspecialty career (26/35, 74%), and had not previously received invisible illness communication strategy teaching (31/35, 89%). Interns felt communication was an important aspect of working with patients with invisible illness before and after the curriculum (4.86 vs. 4.91, p = 0.16) (Table  1 ). Following the workshop, interns reported a statistically significant reduction in perceived communication difficulty (4.09 vs. 3.51, p < 0.01) and a statistically significant increase in looking forward to working with patients with invisible illness (2.23 vs. 3.20, p < 0.01) (Table  1 ). There was a statistically significant improvement across all assessed comfort items (Table  1 ). Small-to-moderate effect sizes were observed for interns’ increased comfort with expressing empathy (4.37 vs. 4.63, p = 0.02, Cohen’s dᶻ = 0.42) and validation (4.00 vs. 4.43, p < 0.01, Cohen’s dᶻ = 0.70), whereas large effect sizes were observed for the other communication skills. The largest effects were seen for providing education (2.51 vs. 3.89, p < 0.01, Cohen’s dᶻ = 1.56), setting expectations (2.54 vs. 4.09, p < 0.01, Cohen’s dᶻ = 1.89), and discussing management strategies (2.51 vs. 3.8, p < 0.01, Cohen’s dᶻ = 1.50). The session was rated as excellent by 71% (25/35) and good by 29% (10/35) of interns.\nNS = not significant.\nIn the free-response section, interns noted the practical framework, real-world sample phrasing, case-based discussion, and normalization of the challenging nature of invisible illness as helpful. Areas for improvement included dedicated time for practice conversations, additional sessions on invisible illness diagnosis and management, and increased focus on the patient's perspective. We did not perform a formal qualitative analysis on free-response feedback; however, in Table  2 , we provide examples of free-response feedback.\n\nTo our knowledge, this is the first study to evaluate an invisible illness communication strategy curriculum. The curriculum was well received by IM interns and increased comfort levels across all assessed communication skills. Small effect sizes were seen for items such as comfort with expressing empathy and validation, which may be a result of the ceiling effect, as participants expressed high levels of comfort with these items at baseline. Limitations of the study include the single-institutional design, small sample size without a control group, self-reported outcomes, use of a de novo survey with limited psychometric validation, lack of long-term follow-up, and lack of objective skills assessment. The single institutional design and small sample size may have negatively impacted the validity of the study findings and may limit generalizability to other institutions or geographic regions. Additionally, there may be limited generalizability to primary care-oriented programs, as 74% of the participants were planning a subspecialty career. The small group setting and dedicated time with one faculty member may have created social desirability bias, influencing participants to respond positively to the post-survey. We attempted to mitigate any bias by anonymous survey responses; however, social desirability bias may have substantially impacted responses.\nRelated studies in chronic, noncancer pain, medically unexplained symptoms, and fibromyalgia demonstrate that educational interventions are generally well-received by physicians and improve knowledge, skills, and attitudes [ 38 - 44 ], but these curricula are infrequently taught in medical education despite the prevalence of invisible illness. Poor communication in the care of patients with invisible illness has far-reaching consequences for both patient and provider outcomes [ 26 - 28 ]. The current study assesses participants’ attitudes and comfort with communication skills when working with patients with invisible illness; however, the study does not assess whether increased invisible illness communication strategy education leads to application of this knowledge, behavior change, or impact on patient outcomes. To address this important gap, the next steps would include designing a study to assess the educational impact on objective outcomes, such as the application of the framework during a visit or patient satisfaction with the provider’s communication. Although additional educational interventions, including longitudinal, consistent education across all levels of medical training, are likely needed to train physicians to be fully competent in invisible illness, the invisible illness communication strategy curriculum represents a feasible first step. We believe interns may be a particularly important group to target for invisible illness communication strategy education, as they have likely gained sufficient clinical exposure to recognize these challenges, but have not yet developed fixed, negative attitudes toward caring for patients with invisible illness.\n\nThe current study demonstrates that a one-hour invisible illness communication strategy curriculum was feasible, acceptable to IM interns, and had perceived value among the participants; however, it was unable to assess participant behavior change or impact on patient outcomes. Future studies could further evaluate the impact of this curriculum, including trainees’ application of the framework during clinical encounters, trainees’ invisible illness attitudes over the course of residency, and whether implementation is associated with improved patient-physician relationships, patient and physician satisfaction, and patient-level outcomes. We plan to incorporate intern feedback in subsequent iterations of this workshop by featuring patient quotations from qualitative studies throughout the presentation to highlight the patients' perspectives and reserving time at the end of the curriculum to practice communication drills. Of note, several interns requested more invisible illness education in the free-response section. Exploring existing invisible illness curricula in medical education and considering additional development may be necessary to train physicians competent in caring for patients with invisible illness and improve healthcare experiences and outcomes for patients with invisible illness.","source_license":"CC-BY-4.0","license_restricted":false}