[19330693 - Journal of Neurosurgery] Dr. Louise Eisenhardt’s personal notes- how she and Dr. Cushing collected data and followed patients

HISTORICAL VIGNETTE Dr Louise Eisenhardt’s personal notes: how she and Dr Cushing collected data and followed patients Kelsey N Hundley, MD, T Glenn Pait, MD, Analiz Rodriguez, MD, PhD, and John D Day, MD Department of Neurosurgery, University of Arkansas for Medical Sciences, Little Rock, Arkansas Dr Louise Eisenhardt was one of the first neuropathologists and was responsible for the development of tumor diagnosis guidelines This historical vignette reviews her previously unseen handwritten notes in which she describes methods used by her and Dr Harvey Cushing to obtain patient follow-up data for their Brain Tumor Registry Her description spans 50 years, using “every possible clue to be jumped upon in [their] clinical records and correspondence.” Their follow-up was divided into two periods: early follow-up (1912–1932) and registry (1933–1961) During early follow-up, patients were asked to write to them on the anniversary of their operation The foundation of the registry necessitated the use of “considerable effort on [their] part to gather up old threads” including renewed contact with patients after 15–20 years Methods of follow-up included continued verbal and written correspondence with patients and “strong-arm methods,” including use of the Fuller Brush man and the exhumation of a body Drs Eisenhardt and Cushing believed “every case was important in adding to our collective knowledge of various types of tumors particularly in relationship to life expectancies and suggesting improvement in surgical treatments.” Dr Eisenhardt’s meticulous record keeping allows for insights into the first known outcomes-related tumor registry in neurosurgery https://thejns.org/doi/abs/10.3171/2021.4.JNS201086 L KEYWORDS  Louise Eisenhardt; Harvey Cushing; “Dr C.”; tumor registry; history; oncology ouise Eisenhardt (1891–1967) is admired for her commitment to the advancement of neurosurgery and neuropathology; she was the first editor of the Journal of Neurosurgery,1 and until 2018, the first woman to have served as president of the American Association of Neurological Surgeons (AANS), then known as the Harvey Cushing Society, in 1938.2–4 Her long list of accomplishments and singular devotion to excellence make her a pillar of neurosurgery and one of the most compelling characters in its history As such, it is important to further highlight her ingenuity and tenacity in the methods by which she and Dr Cushing collected patient outcome data by presenting her personal notes Dr Eisenhardt began working with Dr Cushing as his secretary and editorial assistant in 1915 at the Peter Bent Brigham Hospital (PBBH) in Boston.2–4 She kept records of the tumors he operated on as early as 1915, in her famous little black book.2–4 When he departed for the Great War in 1917, he left her with the arduous task of indexing and eventually publishing Tumors of the Nervus Acusticus Cushing stated in the preface, “To my secretary, Miss Louise Eisenhardt, whose assistance has been invaluable during the preparation of this monograph, I must leave the task of preparing the index and seeing the book through the press.”5 After Dr Cushing returned from his service in World War I, Dr Eisenhardt’s interest in intracranial tumors became more focused Even when she entered Tufts Medical School, she continued to record Cushing’s operative cases of various tumors She graduated in 19252 and started an internship at Yale Due to her close working relationship with Dr Cushing and dedication to his tumor collection and pathology, she transferred to the Women and Children’s Hospital in Boston.3 When Dr Percival S Bailey accepted the Chair of Neurology and Neurosurgery at the University of Chicago in 1928,6 Dr Eisenhardt readily accepted this newly open neuropathology position at PBBH.2,3 She and Dr Cushing developed a lifelong dedication to neurosurgery and neuropathology as demonstrated through their many publications When Cushing accepted the Sterling Professor of Neurology at Yale in 1933,7 he left his surgical practice in Boston Eisenhardt stayed in Boston to supervise the future Brain Tumor Registry of almost 2000 intracranial tumors and 50,000 clinical records.2,3 They recognized the importance of the tumor registry and its impact on the developing field of neurosurgery and pathology In 1934, she joined Dr Cushing again and with the registry moved from Boston to New Haven.2,3 We reviewed Dr Eisenhardt’s personal notes describing this era and summarize the methods used to ensure long-term follow-up data for their tumor registry ABBREVIATIONS  CBTRUS = Central Brain Tumor Registry of the United States; NCDB = National Cancer Research Database; PBBH = Peter Bent Brigham Hospital SUBMITTED  June 7, 2020.  ACCEPTED  April 1, 2021 INCLUDE WHEN CITING  Published online September 24, 2021; DOI: 10.3171/2021.4.JNS201086 © 2021 The authors, CC BY-NC-ND 4.0 (http://creativecommons.org/licenses/by-nc-nd/4.0/) J Neurosurg  September 24, 2021 Unauthenticated | Downloaded 01/22/22 08:48 PM UTC Hundley et al FIG Dr Eisenhardt making notes at her desk in the PBBH laboratory Photograph by Dr Richard U Light, obtained with permission from Dr Christopher Light Historical Archives Review Through the historical neurosurgical library maintained in the Department of Neurosurgery at the University of Arkansas for Medical Sciences, a collection of personal notes, files, and photographs of Dr Eisenhardt’s were reviewed Of particular interest to the authors were her handwritten stories from patients many years after surgery and the speaker notes from a talk she gave at the Second International Congress of Neurological Surgery in Washington, DC, in 1961, titled “Life expectancies after operations for intracranial tumors,”8 wherein she describes how she and Dr Cushing followed their tumor patients for many years From these records, Drs Eisenhardt and Cushing’s motivations and methods used to contact patients are described Eisendardt’s Methods and Motivations Almost a century later, medical record keeping and patient follow-up are daunting tasks Drs Eisenhardt and Cushing recognized that to fully understand the outcome of surgery for various tumors, they would need to see and hear from their patients again and again Already known for her deliberate and meticulous record keeping,9 Dr Eisenhardt began taking notes (Fig 1) In these notes she describes the unusual and creative methods she and Dr Cushing implemented to find their patients They were relentless in collecting data and follow-up of their tumor patients The first FIG Page of Dr Eisenhardt’s notes titled “Life expectancies after operations for intracranial tumors.” Courtesy of the Louise Eisenhardt Library, University of Arkansas for Medical Sciences page of her notes was titled “Life Expectancy,” with 2000 identified tumors and over 700 patients still living (Fig 2); she writes, “Life is not so hopeless for those afflicted with intracranial tumors as is generally supposed.” In her notes she divides their methodology into two periods (Fig 2): “Early follow up” and “Registry follow up,” differentiating how patients were contacted before and after the Brain Tumor Registry was founded In the early follow-up years, data collecting was a bit more traditional: they sent letters home to patients years after discharge and asked the patients to write updated letters on the anniversary of their operation Specifically, for acoustic neuromas, cerebellar astrocytomas, and meningiomas, stereotyped questionnaires were sent with stamped and addressed return envelopes enclosed When the Brain Tumor Registry was founded, they had to create novel ways to contact patients with whom followup had been lost, sometimes as long as 15–20 years prior She writes, “This meant considerable effort on our part” (Fig 2) Like Dr Eisenhardt, some patients were meticulous in their self-reported follow-up, writing letters year J Neurosurg  September 24, 2021 Unauthenticated | Downloaded 01/22/22 08:48 PM UTC Hundley et al FIG Page of Dr Eisehardt’s notes in which she describes methods of follow-up “at present” or once the Brain Tumor Registry is founded Courtesy of the Louise Eisenhardt Library, University of Arkansas for Medical Sciences after year, while others would send back worn envelopes containing reports years overdue Some patients were unable to write back at all due to language deficits after surgery Tracking people down in the early 20th century was no easy feat: people moved, left the country, married and changed their names, and in one case she describes, a patient who did not marry changed their name anyway She writes, “we use every possible clue to be jumped upon in our clinical research and correspondence” (Fig 3) In this pre–Health Insurance Portability and Accountability Act (HIPAA) era, Eisenhardt and Cushing started with family, other physicians treating the patient, and sometimes their employers or previous employers to discover a patient’s whereabouts In some instances, they found the mail carrier who was initially delivering their follow-up questionnaires and had them ask the neighbors for information on the whereabouts of the patient (Fig 3) Other extraordinary efforts to document follow-up and tumor progression included routine visits to city halls and searches through directories, voting records, and tax re- FIG Page of Dr Eisenhardt’s notes further describing means of follow-up after surgery, including “strong-arm methods.” Courtesy of the Louise Eisenhardt Library, University of Arkansas for Medical Sciences cords They searched through the bureau of vital statistics, hometown newspapers, and even board of education records if the patient was a teacher (Fig 4) They reviewed the insurance policies of their many patients who had applied for disability insurance They went to churches, and in one case the “mayor of one town helped us trace a priest whose housekeeper was [the] sister of [a] man who changed his name,” to inquire about the exact date of his death (Fig 3) In some cases, routine methods were not enough, and they had to resort to what Dr Eisenhardt called “strongarm methods” to get in contact with patients The board of education once pointed them toward the location of a teacher, but she would not open the door to Dr Cushing As such, Dr Eisenhardt sent the Fuller Brush man, the once ubiquitous door-to-door brush cleaner salesman, to the teacher’s house to gain access and to evaluate her for a reported residual deficit Once, they even got permission from a family via long-distance telephone call to have a body exhumed for examination (Fig 4) Through their diligence, not only did they obtain clinical data, but also they formed deeply personal relationships with their patients that carried on for many years (Fig 5) J Neurosurg  September 24, 2021 Unauthenticated | Downloaded 01/22/22 08:48 PM UTC Hundley et al FIG Page of Dr Eisenhardt’s notes in which she describes the results of all the returned letters, including the personal relationships formed, the unfailing support of their colleagues, and the important addition of each case to their body of knowledge Courtesy of the Louise Eisenhardt Library, University of Arkansas for Medical Sciences Patients would come from afar to see them in the clinic for checkup examinations Some would even undertake the task of making a long-distance phone call to update, which was not an easy feat in the early 20th century, and “Often, [patients are] so enthusiastic in describing [their] activities that they not even mention their health.” She writes that if there was indication of possible recurrence, “we leave no stone unturned to see to it that the best possible care is given”, and her “medical colleagues [were] unfailing in their support.” She describes a time when a patient with an astrocytoma resected 20 years prior wrote her “of disturbing symptoms.” She arranged for the patient to have surgery with Dr Gilbert Horrax, warning “him of [the] vascularity of growth”; ultimately, “four transfusions [were] necessary” during the case Dr Eisenhardt documented her patient interactions by hand, in pencil, on delicate paper She organized these follow-up reports by patient name, the date of surgery, the age of the patient, the time of the last follow-up, the tumor type, years since initial surgery, and a brief description of the exchange she had with the patient or their family Leah Coffey’s mother wrote 32 years after Dr Cushing had resected her then 4-year-old daughter’s cerebellar astrocytoma (Fig 6) Dr Eisenhardt noted, “In good health – has children Had a burning desire to become a nurse after her hospital stay and so she became a registered nurse and loves her profession She works very hard with housework etc at home.” Lou Stafford was 14 years old when Dr Cushing resected her cerebellar cyst (Fig 7) She wrote 34 years later to say, “Your trace work was just like a detective story – one of my pet hobbies.… I can but wish that all of Dr C’s patients are feeling as well as I am.” Dr Eisenhardt summarized further, “Graduate of Barnard Major psychol Husband moves around so she has migrated In California 10 years now – a record Has children an electric engineer, daughter married an electric engineer Youngest son is a student seems destined for engineering Husband is an engineer but achieve it the hard way, having majored in music in college.” Selina Tracy was 84 when she reported back 52 years FIG A section of Dr Eisenhardt’s documentation of patient anecdotes Courtesy of the Louise Eisenhardt Library, University of Arkansas for Medical Sciences J Neurosurg  September 24, 2021 Unauthenticated | Downloaded 01/22/22 08:48 PM UTC Hundley et al FIG Page of Dr Eisenhardt’s documentation of patient anecdotes Courtesy of the Louise Eisenhardt Library, University of Arkansas for Medical Sciences after her initial operation (Fig 7) She wrote, “Dr C was one fine doctor.” She told Dr Eisenhardt that she felt lucky to be around after such an operation and that she was still able to some work around the house Legacy of Dr Eisenhardt’s Data Collection Dr Eisenhardt’s and Dr Cushing’s data collection demonstrates the importance of creating and maintaining records of brain tumors, surgical procedures, and patient outcomes to determine the best ways to follow and treat the many complex surgical issues of the nervous system Cushing believed that “the mere lengthening of a patient’s months or years without rendering them more livable is no justification whatsoever of an operative procedure.”10 Therefore, he and Dr Eisenhardt undertook the justification of their treatments through their meticulous follow-up to demonstrate that intracranial lesions did not mean the end of a satisfying life and to help fortify neurosurgery’s future Today, data collection continues with the use of the electronic medical record, artificial intelligence, ambient computing, and machine learning Founded six decades after Dr Eisenhardt’s and Dr Cushing’s Brain Tumor Registry, when the collection of central cancer data was mandated in 1992,11 the Central Brain Tumor Registry of the United States (CBTRUS) is the nation’s largest population-based database for all CNS tumors.12 This database obtains its data indirectly through central cancer registries and primarily focuses on the incidence and histology of these tumors For outcomes-related data, many surgeons use the National Cancer Research Database (NCDB), which aggregates its data from accredited cancer proJ Neurosurg  September 24, 2021 Unauthenticated | Downloaded 01/22/22 08:48 PM UTC Hundley et al References FIG Detail from image of Dr Cushing and Dr Eisenhardt pictured at his 70th birthday party Modified from Brown H The Harvey Cushing Society J Neurosurg 1958;15:587–601 Published with permission grams in the United States.13,14 Although the CBTRUS and NCDB are modern versions of the Brain Tumor Registry founded by Drs Eisenhardt and Cushing, both have limitations Notably, neither has the personal details that make Dr Eisenhardt’s notes so emotionally provocative and insightful to the lives of patients living with, instead of dying from, disease Neurosurgeons should be inspired to keep their own records of patients, not only to understand better the natural history, impact of surgery, and outcomes of neurosurgical diseases, but also to simply document the humanism that makes the field of neurosurgery so compelling As pioneers in the critical analysis of patient outcome data and given the lengths they went through just to obtain it, Dr Eisenhardt and Dr Cushing would most assuredly be very much at home collecting data today It was once a strongly held belief that having an intracranial tumor carried a death sentence,15 but their diligent work showed us just the opposite: life is not so hopeless (Fig 8) Acknowledgments We would like to acknowledge Dr Stevenson Flannigan for establishing the Dr Louise Eisenhardt Library and the Department of Neurosurgery at the University of Arkansas for Medical Sciences for providing the original materials necessary to produce this writing We would also like to acknowledge Richard Upjohn Light, MD, and Christopher Upjohn Light, PhD, for their generous photographic contribution   Bucy PC The Journal of Neurosurgery:​its origin and development J Neurosurg 1964;​21(7):​1–12   Ray BS Louise Eisenhardt 1891-1967 Surg Neurol 1977;​ 8(4):​227–228   Davey LM Louise Eisenhardt, M.D.:​first editor of the Journal of Neurosurgery (1944-1965) J Neurosurg 1994;​80(2):​ 342–346   German WJ Dr Louise Eisenhardt J Neurosurg 1967;​26(3):​ 285–288   Cushing H Tumors of the Nervus Acusticus and the Syndrome of the Cerebellopontine Angle WB Saunders Co;​ 1917   Bucy PC Percival Bailey (1892–1973) National Academy of Sciences;​ 1989   Fulton JF Harvey Cushing as we knew him Bull N Y Acad Med 1954;​30(11):​886–915   Eisenhardt L Discussion In:​Second International Congress of Neurological Surgery of the World Federation of Neurosurgical Societies:​Abstracts and Descriptions of Contributions to the Scientific Program Washington, D.C., October 14-20, 1961 Excerpta Medica 1961   Schwartz HG History of the Journal of Neurosurgery, 19651980 J Neurosurg 1994;​80(5):​939–940 10 Fitz RH Some surgical tendencies from a medical point of view Boston Med Surg J 1901;​145:​693–699 11 Cancer Registries Amendment Act, S 3312, 102nd Cong 102– 515 (1992) Accessed May 20, 2021 https:​//www.congress gov/bill/102nd-congress/senate-bill/3312 12 Ostrom QT, Gittleman H, Truitt G, et al CBTRUS Statistical Report:​Primary Brain and Other Central Nervous System Tumors Diagnosed in the United States in 2011-2015 Neuro Oncol 2018;​20(suppl 4):​iv1–iv86 13 Merkow RP, Rademaker AW, Bilimoria KY Practical guide to surgical data sets:​National Cancer Database (NCDB) JAMA Surg 2018;​153(9):​850–851 14 Boffa DJ, Rosen JE, Mallin K, et al Using the National Cancer Database for outcomes research:​a review JAMA Oncol 2017;​3(12):​1722–1728 15 Cushing H The special field of neurological surgery Cleveland Med J 1905;​4:​1–25 Disclosures The authors report no conflict of interest concerning the materials or methods used in this study or the findings specified in this paper Author Contributions Conception and design: Hundley, Pait Acquisition of data: Pait Analysis and interpretation of data: Hundley, Pait Drafting the article: Hundley Critically revising the article: Hundley, Pait, Rodriguez Reviewed submitted version of manuscript: all authors Approved the final version of the manuscript on behalf of all authors: Hundley Administrative/technical/material support: Pait, Rodriguez Study supervision: Pait, Rodriguez, Day Supplemental Information Previous Presentations This historical vignette was submitted as an abstract and subsequently presented as an oral presentation at the AANS Meeting in April 2018 in New Orleans, Louisiana Correspondence Kelsey N Hundley: University of Arkansas for Medical Sciences, Little Rock, AR knhundley@uams.edu J Neurosurg  September 24, 2021 Unauthenticated | Downloaded 01/22/22 08:48 PM UTC ... unusual and creative methods she and Dr Cushing implemented to find their patients They were relentless in collecting data and follow-up of their tumor patients The first FIG Page of Dr Eisenhardt’s. .. tumors,”8 wherein she describes how she and Dr Cushing followed their tumor patients for many years From these records, Drs Eisenhardt and Cushing? ??s motivations and methods used to contact patients are... that she felt lucky to be around after such an operation and that she was still able to some work around the house Legacy of Dr Eisenhardt’s Data Collection Dr Eisenhardt’s and Dr Cushing? ??s data