The term for a patient who lists their questions was likely coined in the late 19th century in the clinic of Jean-Martin Charcot at the Salpêtrière. Known as la maladie du petit papier, or the illness of the little paper, the derogatory descriptor was inherently feminine and usually reserved for hypochondriacs making a laundry list of their purported ailments.
As researchers in and proponents of the burgeoning field of shared decision-making, we now know that doctors shouldn’t be so dismissive of patients who bring in a list of questions. In fact, medical systems should be promoting the practice.
By 1985, a study of 900 patients in general medicine clinics, published in the New England Journal of Medicine, showed that those who listed their questions were neither more likely to have mental illnesses nor less likely to have physical illnesses than the non-list makers.
While this meant there was nothing to lose by making a list, in the decades since that study, loads of evidence-based research on shared decision-making has revealed that there’s a lot to gain.
The first question-listing clinical service was implemented in 1999 at the University of California, San Francisco, based on research by one of us (Karen) and another colleague, Jeff Belkora, Ph.D., to improve collaboration between breast cancer patients and physicians. Patients reported a reduction in communication barriers while both patients and physicians reported increased satisfaction during the visit.
In fact, patients tend to be more confident and less anxious — the opposite of the nervous hypochondriac stereotype — after participating in question-listing calls. Having a prepared list encouraged patients to ask more questions during their visits, making them more engaged with their health care. And with longer wait times and shorter visits that can put patients at risk, organized questions can serve as the agenda necessary to prevent missing symptoms while effectively consolidating information from different doctors.
Following in the footsteps of the UCSF program, over the past three years, we’ve established a program for a group of student volunteers at the Massachusetts General Hospital’s Health Decision Sciences Center to prepare question lists, usually between a half and full page, for patients to take with them to appointments.
We use prompts like, “What do you want to know about your diagnosis (or test result, symptom, etc.)?” “Have you read or heard anything?” “Who else will be involved in your care?” and “Are you looking for statistics or trying to avoid them?” to help brainstorm, list, and organize everything on the patient’s mind before their appointment. Our free service began in primary care and has since expanded into orthopedics, cardiology, and urogynecology.
The program offers a three-in-one benefit: improving patient preparedness, maximizing physician understanding, and encouraging student education.
Preparing a question list saves patients the time they would have spent at an appointment recalling the chronology of visits with different specialists or regimen of medications they take. Patients can come prepared to make sense of an opaque test report loaded with medical jargon, ready to share information about their social support systems, and able to articulate their long-term health goals.
Patients in primary care share that they like picking topics to focus on in advance of their visit and sometimes go through multiple rounds of editing a list as they recall new information. In specialties focused on long-term chronic condition management like urogynecology, choice of treatments for conditions like urinary incontinence and pelvic organ prolapse strongly depend on developing a care plan adapted to changing symptoms and patient preferences.
Physicians we’ve worked with say they believe socially disadvantaged patients particularly benefit from using freely available templates and prompts to create a question list. Those patients don’t always have the resources or experiences with medical visits to know what types of questions to ask, or how to ask them. The question listing service prepares them to be stronger advocates for their health.
When there is limited time to gather patient history, the question lists can even serve as pre-appointment surveys for the physicians. And the more complicated a condition, the more barriers there can be to fullest understanding between a patient and physician. Whether reviewed before a visit or during, the question list can bring down such barriers, especially for patients with low health literacy or limited English proficiency (in which cases, we work with a telephone interpreter).
Student volunteers can gain authentic and active clinical experience conducting the question listing interviews with patients. For a premedical student, this is often more valuable than racking up shadowing hours or performing non-clinical volunteer tasks at a hospital. For a medical student, this experience comes with the benefit of expanding their clinical vocabulary, transforming empathy prompts into genuine connections, and setting the stage for a career helping people make important decisions about their health. Patients faced with new diagnoses or difficult decisions about having surgery are often quickest to take us up on the offer for a question list — in fact, they often already have some notes jotted down.
Working on question lists does not require a trained coach, however. A family member or friend can be a helpful guide to preparing for a visit, as the process of making a question list can decrease worry and increase a patient’s sense of control. In fact, there are various methods to brainstorm, clarify, and organize a question list, and anyone can find frameworks to navigate their medical decisions, including the Ottawa decision guides, the University of Wisconsin Surgery’s Best Case/Worst Case framework, or our own pre-appointment question list.
Granted, patients often share their concerns in pre-appointment surveys, waiting room forms, and conversations with a series of medical assistants, nurses, and residents even before seeing their doctor. Unfortunately, this information can still be fragmented, and patient records can be outdated or erroneous, or include irrelevant material.
Question lists, on the other hand, are guided entirely by patient priority and can be used as a concise, organized tool at the final point of contact. Simple strategies, like bolding the most important information, helps to quickly draw attention to the most meaningful information for doctors and patients alike.
The medical system can take many notes from la maladie du petit papier. Establishing programs to prepare this little paper is a much bigger commitment to teaching students, supporting physicians, and, most importantly, honoring patient needs.
Akila Muthukumar is a student volunteer and former co-president of the Massachusetts General Hospital Patient Support Corp as well as a former STAT news intern. Leigh Simmons, M.D., is a primary care physician at Massachusetts General Hospital and directs the internal medicine clerkship for Harvard Medical School students at MGH. Karen Sepucha, Ph.D., is the director of the Health Decision Sciences Center in the Division of General Medicine at MGH and an associate professor in Medicine at Harvard Medical School.