Articles 

Selected articles written and co-authored by the members of the Health Assessment Labs Board of Directors and associates.

Click Authors Name to view their articles 

Dr. Eugene C. Nelson

 
View authors entire bibliography here

A Person-Centered, Registry-Based Learning Health System for Palliative Care: A Path to Coproducing Better Outcomes, Experience, Value, and Science.

 
Authors: Kamal A,  Kirkland k, Meier D, TamaraS, Morgan T ,  
Nelson E.C Pantilat S
Journal of Palliative Medicine,  2018 Mar 1; 21(Suppl 2): S-61–S-67.

 

Abstract:
Background: Palliative care offers an approach to the care of people with serious illness that focuses on quality of life and aligning care with individual and family goals, and values in the context of what is medically achievable.
Objective: Measurement of the impact of palliative care is critical for determining what works for which patients in what settings, to learn, improve care, and ensure access to high value care for people with serious illness.
Methods: A learning health system that includes patients and families partnering with clinicians and care teams, is directly linked to a registry to support networks for improvement and research, and offers an ideal framework for measuring what matters to a range of stakeholders interested in improving care for this population.
Measurements: Measurement focuses on the individual patient and family experience as the fundamental outcome of interest around which all care delivery is organized.
Results: We describe an approach to codesigning and implementing a palliative care registry that functions as a learning health system, by combining patient and family inputs and clinical data to support person-centered care, quality improvement, accountability, transparency, and scientific research.
Discussion: The potential for a palliative care learning health system that, by design, brings together enriched information environments to support coproduction of healthcare and facilitated peer networks to support patients and families, collaborative clinician networks to support palliative care program improvement, and collaboratories to support research and the application of research to benefit individual patients is immense.

Link: Journal of Palliative Medicine 

Patient focused registries can improve health, care, and science

 
Authors: Nelson E.C., Dixon-Woods MBatalden P, Homa K, Van Citters A.D Morgan T.S, Eftimovska E, Fisher E.S.Ovretveit J,  Harrison W,  Lind C,  Lindblad S, BMJ 2016; 354

 

Abstract:
Large scale collection and analysis of data on patients’ experiences and outcomes have become staples of successful health systems worldwide. The systems go by various names—including registries, quality registries, clinical databases, clinical audits, and quality improvement programmes1 2— but all collect standardised information on patients’ diagnoses, care processes, and outcomes, enabling systematic comparison and analysis across multiple sites. Hundreds of what we will term, for simplicity, “registries,” now exist around the world. The United Kingdom is home to over 50 clinical audit programmes,3 the United States has over 110 federally qualified registries certified to report quality metrics,4 and Sweden, perhaps the registry epicentre, has over 100, covering conditions from birth to frail old age.5
These registries have had far reaching effects. They facilitate public reporting, retrospective and prospective research, professional development, and service improvement. They reveal variations in practices, processes, and outcomes, and identify targets for improvement. In the UK, they have been associated with many notable successes, including improvements in management of cardiovascular disease and stroke,6 7 cancer,8 and joint replacement.9

 

Link: BMJ

Patient reported outcome measures in practice

Authors: Nelson E.C.,  Eftimovska E, Lind C, Hager A, Wasson J, Lindblad S
British Medical Journal, February 10th, 2015 
 
Abstract:
Patient-reported outcomes (PROs) can show how patients perceive their illness burden over time. Active use of PROs by clinicians at the point of service can help illuminate the patients' longitudinal changes in outcomes, thereby advancing shared decision making, patient engagement, and self-care. This article offers principles and lessons learned from using PROs and provides 3 case studies to demonstrate how to overcome the challenges in using PROs in routine clinical practice to improve outcomes. These cases demonstrate that it is possible to embed patient-generated data into the flow of care and to track outcomes for improvement and research.

 

Link: British Medical Journal

General Internists’ Views On Pay-For-Performance And Public Reporting Of Quality Scores: A National Survey

Authors: Nelson E.C., Gentry MA, Mook, KH, Spritzer KL, Higgins JH, Hays RD, 
Medical Care, 42(3), March, 2004.

 

Abstract: 
Very little is known about rank-and-file physicians’ views on pay-for-performance (P4P) and public reporting. In a national survey of general internists, we found strong potential support for financial incentives for quality, but less support for public reporting. Large majorities of respondents stated that these programs will result in physicians’ avoiding high-risk patients and will divert attention from important types of care for which quality is not measured. Public and private policymakers might avoid a physician backlash and better succeed at improving health care quality if they consider these concerns when designing P4P and public reporting programs.

 

Link: Health Affairs 

Designing an Ambulatory Clinical Practice for Outcomes Improvement: From Vision to Reality - The Spine Center at Dartmouth-Hitchcock, Year One. 

 
Authors: Weinstein JN, Brown PW, Hanscom B, Walsh T, Nelson EC
Quality Management in Health Care, 8(2):1-20, Winter 2000.

 

Abstract: 
Development of a new program for diagnosis and treatment of spine-related problems provided a unique opportunity to design and implement a new model for delivery of health care incorporating outcomes measurement and improvement. Key features include: application of microsystem thinking and interdisciplinary practice; integration of a uniform outcomes measurement tool, the Dartmouth Clinical Value Compass; and touch pad technology for data collection. This, for the first time, provided clinically meaningful point-of-service data and aggregated information for improvement. A further advantage was the ability to integrate a clinical research program within this microsystem. A multisite clinical research trial, the Spine Patient Outcomes Research Trial (SPORT), modeled on the Spine Center microsystem and funded by The National Institute of Arthritis, Musculoskeletal and Skin Diseases and the Office of Research on Women's Health, the National Institutes of Health, and the National Institute of Occupational Safety and Health, the Centers for Disease Control and Prevention, is currently underway.

 

Link: Quality Management in Health Care

Creating a culture of health: evolving healthcare systems and patient engagement.

 
Authors: Lindblad S,  Ernestam S, Van Citters A.D., 
Lind C, Morgan T.S., Nelson E.C.
QJM An International Journal of Medicine - Volume 110, Issue 3, 1 March 2017, Pages 125–129, 

 

Abstract:
We all recognize that today’s healthcare megatrends are challenging to people, practitioners, scientists, healthcare systems, governments and life science companies. This is particularly true for the increasingly frequent chronic conditions in which these trends coalesce.1 How do we handle the complexity of delivering personalized medicine that reflects individual preferences while taking advantage of the evidence base?2 What is the answer for the rising cost of both the proliferation of treatments effective for chronic conditions3 and those of conducting clinical research?4 Finally, how do we address the new business challenge for healthcare providers to move away from paying for volumes of services in favor of paying for the value of health outcomes achieved by the patients they serve who have lifelong chronic health problems?5
It is critical for systems wishing to help patients and their communities optimize health to learn to partner with patients in all aspects of care re-design, from planning through delivering services and evaluating outcomes. Moreover, the focus of this partnership will be on improving health, including the contribution that healthcare services make. Methods that facilitate the systematic inclusion and amplification of the patient voice, such as patient reported outcome measures, help us change the focus of the conversation.6
In this paper, we propose an approach that supports a shift towards a culture of health by facilitating new conversations—bases for culture and cultural change—among all stakeholders involved. We will provide an example of a learning health system that promotes specific changes that are catalyzed through sharing information and holding conversations among stakeholders to promote healthier lives for people who are living with chronic disease.

 

Link: Oxford Academic

Using Patient-Reported Outcomes in Routine Practice Three Novel Use Cases and Implications

Authors: Forsberg HHNelson E.C.Reid R
Grossman DMastanduno MPWeiss LTFisher ESWeinstein JN
 Journal of Ambulatory Care Management April/June 2015 38: (2):186–193.

 

Abstract:
Patient-reported outcomes (PROs) can show how patients perceive their illness burden over time. Active use of PROs by clinicians at the point of service can help illuminate the patients' longitudinal changes in outcomes, thereby advancing shared decision making, patient engagement, and self-care. This article offers principles and lessons learned from using PROs and provides 3 case studies to demonstrate how to overcome the challenges in using PROs in routine clinical practice to improve outcomes. These cases demonstrate that it is possible to embed patient-generated data into the flow of care and to track outcomes for improvement and research.

 

Link: The Journal of Ambulatory Care Management

Systems for Patient Participation and Provider Support; Adoption Results from the Original US Context to Sweden and Beyond

Authors: Hvitfeldt H, Carli C, Nelson E.C., Mortenson DM, Ruppert BA, Lindblad S. 
Quality and Safety in Health Care, 18(4); 247-256, October-December 2010.
 
Abstract:
This is a study of 2 clinical feed forward systems (FFSs) situated in different contexts: in the United States, where the system was developed, and in Swedish clinical settings, where it was first adopted. Both systems were identified as clinically successful despite differing contexts, and the objective of this study is to understand what essential properties determined their success.

 

Link: Quality Management in Healthcare

Data and Measurement in Clinical Microsystems: Part 2.

Creating a Rich Information Environment

Authors: Nelson E.C., Batalden PB, Homa K, Godfrey MM, Campbell C, Headrick LA, Huber TP, Mohr, JJ, Wasson JH
 Joint Commission Journal on Quality and Safety, 29(1) 5-15, January 2003. 

 

Abstract: A rich information environment supports the functioning of the small, functional, frontline units--the microsystems--that provide most health care to most people. Three settings represent case examples of how clinical microsystems use data in everyday practice to provide high-quality and cost-effective care.  At The Spine Center at Dartmouth, Lebanon, New Hampshire, a patient value compass, a one-page health status report, is used to determine if the provided care and services are meeting the patient's needs. In Summit, New Jersey, Overlook Hospital's emergency department (ED) uses uses real-time process monitoring on patient care cycle times, quality and productivity indicator tracking, and patient and customer satisfaction tracking. These data streams create an information pool that is actively used in this ED icrosystem--minute by minute, hourly, daily, weekly, and annually--to analyze performance patterns and spot flaws that require action. The Shock Trauma Intensive Care Unit (STRICU), Intermountain Health Care, Salt Lake City, uses a data system to monitor the "wired" patient remotely and share information at any time in real time. Staff can complete shift reports in 10 minutes.  Information exchange is the interface that connects staff to patients and staff to staff within the microsystem; microsystem to microsystem; and microsystem to macro-organization. 

 

Link: Researchgate

Using Patient-Reported Outcomes in Routine Practice Three Novel Use Cases and Implications.

Authors: Nelson E.C., Mohr JJ, Batalden PB, Plume SK

The Joint Commission Journal on Quality Improvement, 22(4):243-258, April 1996.
Abstract: 
CLINICAL VALUE COMPASS APPROACH: The clinical Value Compass, named to reflect its similarity in layout to a directional compass, has at its four cardinal points (1) functional status, risk status, and well-being; (2) costs; (3) satisfaction with health care and perceived benefit; and (4) clinical outcomes. To manage and improve the value of health care services, providers will need to measure the value of care for similar patient populations, analyze the internal delivery processes, run tests of changed delivery processes, and determine if these changes lead to better outcomes and lower costs. GETTING STARTED--OUTCOMES AND AIM: In the case example, the team's aim is "to find ways to continually improve the quality and value of care for AMI (acute myocardial infection) patients." VALUE MEASURES--SELECT A SET OF OUTCOME AND COST MEASURES: Four to 12 outcome and cost measures are sufficient to get started. In the case example, the team chose 1 or more measures for each quadrant of the value compass. OPERATIONAL DEFINITION OF MEASURES: An operational definition is a clearly specified method explaining how to measure a variable. Measures in the case example were based on information from the medical record, administrative and financial records, and patient reports and ratings at eight weeks postdischarge. COMMENTS: Measurement systems that quantify the quality of processes and results of care are often add-ons to routine care delivery. However, the process of measurement should be intertwined with the process of care delivery so that front-line providers are involved in both managing the patient and measuring the process and related outcomes and costs.

 

Link: PubMed

Dr. Lisa Zubkoff

 
View authors entire bibliography here

The Burden of Cystoscopic Bladder Cancer Surveillance: Anxiety, Discomfort, and Patient Preferences for Decision Making.

Authors: Koo KZubkoff LSirovich BEGoodney PPRobertson DJSeigne JDSchroeck FR
Urology 2017 Oct;108:122-128.

 

Abstract:
OBJECTIVE:
To examine discomfort, anxiety, and preferences for decision making in patients undergoing surveillance cystoscopy for non-muscle-invasive bladder cancer (NMIBC).
METHODS:
Veterans with a prior diagnosis of NMIBC completed validated survey instruments assessing procedural discomfort, worry, and satisfaction, and were invited to participate in semistructured focus groups about their experience and desire to be involved in surveillance decision making. Focus group transcripts were analyzed qualitatively, using (1) systematic iterative coding, (2) triangulation involving multiple perspectives from urologists and an implementation scientist, and (3) searching and accounting for disconfirming evidence.
RESULTS:
Twelve patients participated in 3 focus groups. Median number of lifetime cystoscopy procedures was 6.5 (interquartile range 4-10). Based on survey responses, two-thirds of participants (64%) experienced some degree of procedural discomfort or worry, and all participants reported improvement in at least 2 dimensions of overall well-being following cystoscopy. Qualitative analysis of the focus groups indicated that participants experience preprocedural anxiety and worry about their disease. Although many participants did not perceive themselves as having a defined role in decision making surrounding their surveillance care, their preferences to be involved in decision making varied widely, ranging from acceptance of the physician's recommendation, to uncertainty, to dissatisfaction with not being involved more in determining the intensity of surveillance care.
CONCLUSION:
Many patients with NMIBC experience discomfort, anxiety, and worry related to disease progression and not only cystoscopy. Although some patients are content to defer surveillance decisions to their physicians, others prefer to be more involved. Future work should focus on defining patient-centered approaches to surveillance decision making.

 

Link: Urology

Prescription sharing, alcohol use, and street drug use to manage pain among veterans.

Authors: Goebel JR, Compton P, Zubkoff L, Lanto A, Asch SM, Sherbourne CD, Shugarman L, Lorenz KA.
The Journal of Pain Symptom Management,  Vol 41, No. 5, May 2011

 

Abstract:
Context: Efforts to promote awareness and management of chronic pain have been accompanied by a troubling increase in prescription medication abuse. At the same time, some patients may misuse substances in an effort to manage chronic pain.
Objectives: This study examines self-reported substance misuse for pain management among veterans and identifies the contributing factors.
Methods: We analyzed cross-sectional data from the Help Veterans Experience Less Pain study.
Conclusion: Veterans with a history of SUDs, greater pain interference, more non-pain symptoms, and mental health concerns should be carefully managed to deter substance misuse for pain management.

 

Link: PubMed

Using patient-reported outcome measurement to improve patient care.

Authors: Øvretveit J,  Zubkoff L, Nelson E.C., Susan Frampton S, Lehmann Knudsen J, Zimlichman E
International Journal for Quality in Health Care, Volume 29, Issue 6, 1 October 2017
Abstract: Patients at the center of care is often the stated focus of clinicians and healthcare services. The quality and safety movement has shown that effective organization of care is needed, in addition to professional skills. This movement has provided professionals and others with methods to improve both organization and practice for patients. These methods include measurement to give those carrying out improvement feedback about the effects of their changes. New types of measures that enable patients to report treatment outcomes can now be use in quality improvement and quality reporting to bring a renewed focus on making care more patient-centered. Although used for some time in research, these measures are relatively new tools for quality improvement and not all research measures are suitable for everyday feedback or improvement projects. The purpose of the paper is to provide an introduction to the use and value of patient-reported outcome measures in quality improvement and to give practical guidance and resources for using PROMs for quality improvement. It draws on the authors’ experiences using patient reported outcomes measures for quality research and improvement and their workshop at the 2016 Tokyo ISQUA conference, as well as on reviews and guidance documents about the use of PROMs. It does not provide a comprehensive and systematic review of research, but an overview and introduction to PROMs for quality improvement.

Link: Oxford Academic​

Does Screening for Pain Correspond to High Quality Care for Veterans?

Authors: Zubkoff L, Lorenz K,  Lanto A, 
Sherbourne C,  Goebel J.R., Glassman P, Shugarman  L.R. 
Meredith L,  Asch S. 
Journal Of General Internal Medicine, Vol 25, Issue 9, March 2010
 
Abstract:
Background: Routine numeric screening for pain is widely recommended, but its association with overall quality of pain care is unclear.
Objective: To assess adherence to measures of pain management quality and identify associated patient and provider factors.
Design: A cross-sectional visit-based study.
Participants: One hundred and forty adult VA outpatient primary care clinic patients reporting a numeric rating scale (NRS) of moderate to severe pain (four or more on a zero to ten scale). Seventy-seven providers completed a baseline survey regarding general pain management attitudes and a post-visit survey regarding management of 112 participating patients.
Measurement and Main Results: We used chart review to determine adherence to four validated process quality indicators (QIs) including noting pain presence, pain character, and pain control, and intensifying pharmacological intervention. The average NRS was 6.7. Seventy-three percent of charts noted the presence of pain, 13.9% the character, 23.6% the degree of control, and 15.3% increased pain medication prescription. Charts were more likely to include documentation of pain presence if providers agreed that “patients want me to ask about pain” and “pain can have negative consequences on patient’s functioning”. Charts were more likely to document character of pain if providers agreed that “patients are able to rate their pain”. Patients with musculoskeletal pain were less likely to have chart documentation of character of pain.
 
Link: Springer.com

Early Identification of Co-Occurring Pain, Depression and Anxiety.

Authors: Sherbourne C, Asch S,  Shugarman L,
Goebel J,  Lanto A, Rubenstein L, Wen L, 
Lisa Zubkoff L, Lorenz K
 Journal Of General Internal Medicine, Vol 24, Issue 5, March 2009
 
Abstract:
BACKGROUND
Depression and anxiety frequently co-occur with pain and may affect treatment outcomes. Early identification of these co-occurring psychiatric conditions during routine pain screening may be critical for optimal treatment.
OBJECTIVE
To determine aspects of pain related to psychological distress, and, among distressed patients, to determine whether pain factors are related to provider identification of distress.
DESIGN
Cross-sectional interview of primary care patients and their providers participating in a Veteran’s Administration HELP-Vets study.
SUBJECTS
A total of 528 predominately male Veterans
MEASUREMENTS AND MAIN RESULTS
We measured self-reported pain, including a 0-10 numeric rating scale and interference items from the Brief Pain Inventory. To evaluate distress, brief indicators of depression, anxiety and PTSD were combined. A substantial number of patients had psychological distress (41%), which was even higher (62%) among patients with moderate-severe current pain. Only 29% of those with distress reported talking to their provider about emotional problems during their visit. In multivariate analyses, other pain factors related to distress included interference with enjoyment of life and relationships with others, pain in multiple locations and joint pains. Prior diagnoses of depression and anxiety were also related to current distress. Only prior diagnosis and patient reported headaches and sleep interference because of pain were related to provider identification of distress.
CONCLUSIONS
VA patients with moderate-severe pain are at high risk for psychological distress, which often goes unrecognized. Providers need to be more vigilant to mental health problems in patients experiencing high pain levels. Targeted screening for co-occurring conditions is warranted.
 
Link: Springer.com

Exploring alternative approaches to routine outpatient pain screening.

Authors: Lorenz K, Krebs E, Bentley T, Sherbourne C, Goebel J, Zubkoff L, Lanto A, Asch S.
Pain Medicine, Oxford University Press, October 1, 2009

 

Abstract:
Objective: To evaluate potential alternatives to the numeric rating scale (NRS) for routine pain screening.
Design: Cross-sectional.
Setting. Nineteen Veterans Affairs outpatient clinics in Southern California at two hospitals and six community sites.
Patients: Five hundred twenty-eight veterans from primary care, cardiology, and oncology clinics sampled in proportion to the total number of visits made to each clinic during the previous year.
Methods: Veterans were approached following clinic visits to complete researcher-administered surveys about their clinic experience. Using the Brief Pain Inventory (BPI) interference scale of ≥5 as a reference standard for important unrelieved pain, we evaluated potential alternative pain screening items and item combinations by analyzing sensitivity and specificity, area under the receiver operating curve (AUC), and likelihood ratios.
Results: Of the veterans, 43.6% had unrelieved pain as measured by the reference standard. Approximately half had painful musculoskeletal diagnoses and one-third had comorbid mental health or substance use disorders. The fifth vital sign detected pain less accurately than did an NRS with a 1-week timeframe and an item assessing pain-related bother over the past week. AUCs were 0.79, 0.86, and 0.86, respectively. A sequential approach combining the pain-related bother and NRS with a 1-week timeframe items had good discriminatory ability.
Conclusions: Alternative single or combined pain screening strategies assessing pain-related bother may improve routine pain detection.

 

Link: Pain Medine - Oxford Journals
 

Dr. Michael Zubkoff

View authors entire bibliography here

Variations in Resource Utilization Among Medical Specialties and Systems of Care Results From the Medical Outcomes Study.

Authors: Greenfield S,  Nelson E.C., Zubkoff M, Manning W,  Rogers W,  Kravitz R.L., Keller A, Tarlov A.R., Ware  J.E Jr. 
 JAMA Vol 267, No. 12,  March 25, 1992,

 

Abstract:
Objective.  —To examine whether specialty and system of care exert independent effects on resource utilization.
Study Design.  —Cross-sectional analysis of just over 20 000 patients (≥18 years of age) who visited providers' offices during 9-day periods in 1986. Patient- and physician-provided information was obtained by self-administered questionnaires.
Setting.  —Offices of 349 physicians practicing family medicine, internal medicine, endocrinology, and cardiology within health maintenance organizations, large multispecialty groups, and solo practices or small single-specialty group practices in three major US cities.
Outcome Measures.  —Indicators of the intensity of resource utilization were examined among four medical specialties (family practice, general internal medicine, cardiology, and endocrinology) and five systems of care (health maintenance organization, multispecialty group—fee-for-service, multispecialty group—prepaid; solo practice and single-specialty group—fee-for-service, and solo practice and single-specialty group—prepaid) before and after controlling for the mix of patients seen in these offices. The indicators of resource utilization were hospitalizations, annual office visits, prescription drugs, and common tests and procedures, with rates estimated on both a per-visit and per-year basis.
Results.  —Variation in patient mix was a major determinant of the large variations in resource use. However, increased utilization was also independently related to specialty (cardiology and endocrinology), fee-for-service payment plan, and solo and single-specialty group practice arrangements. After adjusting for patient mix, solo practice/single-specialty groups—fee-for-service had 41% more hospitalizations than health maintenance organizations. General internists had utilization rates somewhat greater than family physicians on some indicators.
Conclusion.  —Although variations in patient mix should be a major determinant of variations in resource use, the independent effects of specialty training, payment system, and practice organization on utilization rates need further explication. The 2- and 4-year outcomes now being analyzed will provide information critical to interpretation of the variations reported herein.(JAMA. 1992;267:1624-1630)

 

Link: JAMA

Differences in the mix of patients among medical specialties and systems of care. Results from the medical outcomes study.

Authors: Kravitz RL, Greenfield S, Rogers W, Manning WG Jr, Zubkoff M, Nelson EC, Tarlov AR, Ware J.E. Jr.

 JAMA. Vol 267, No. 12, March 25, 1992

Abstract:
OBJECTIVE:
To determine differences in the mix of patients among medical specialties and among organizational systems of care.
STUDY DESIGN:
Cross-sectional analysis of 20,158 adults (greater than or equal to 18 years of age) who visited providers' offices during 9-day screening periods in 1986. Patient and physician information was obtained by self-administered, standardized questionnaires.
SETTING:
Offices of 349 physicians practicing family medicine, internal medicine, endocrinology, and cardiology within health maintenance organizations, large multispecialty groups, and solo or small single-specialty group practices in three major US cities.
OUTCOME MEASURES:
Demographic characteristics, prevalence of chronic disease, disease-specific severity of illness, and functional status and well-being.
RESULTS:
Among patients with selected physician-reported chronic illnesses (diabetes, hypertension, recent myocardial infarction, or congestive heart failure), increasing levels of severity were associated with decreasing levels of functional status and well-being and with increased hospitalizations, more physician visits, and higher numbers of prescription drugs. Compared with patients of general internists, patients of cardiologists were older (56 vs 47 years, P less than .01), had worse functional status and well-being scores (P less than .01), and carried more chronic diagnoses (mean 1.32 vs 1.02, P less than .01); patients of family practitioners were younger (40 vs 47 years, P less than .01) and more functional (P less than .01), carried fewer chronic diagnoses (0.70 vs 1.02, P less than .01), and (among diabetic patients only) had lower disease-specific severity scores (2.06 vs 2.30 on a five-point scale, P less than .01). Compared with patients in health maintenance organizations, patients visiting solo practitioners under fee-for-service payment were older (50 vs 45 years, P less than .01) and sicker (had worse physical functioning) and had a higher mean number of chronic diagnoses (1.10 vs 0.93, P less than .01).
CONCLUSION:
Patient mix is related to utilization and differs significantly across medical specialties and systems of care. These differences must be taken into account when interpreting variations in utilization and outcomes across specialties and systems, and when considering alternative policies for payment.

 

Link: PubMed

The Medical Outcomes Study. An Application of Methods for Monitoring the Results of Medical Care.

Authors:  Tarlov l.R.,   Ware J.E. Jr, Greenfield S,
Nelson E.C., Perrin E, Zubkoff M, 

 JAMA. Vol 262, No. 7, August 18, 1989

Abstract:
The Medical Outcomes Study was designed to (1) determine whether variations in patient outcomes are explained by differences in system of care, clinician specialty, and clinicians' technical and interpersonal styles and (2) develop more practical tools for the routine monitoring of patient outcomes in medical practice. Outcomes included clinical end points; physical, social, and role functioning in everyday living; patients' perceptions of their general health and well-being; and satisfaction with treatment. Populations of clinicians
(n = 523) were randomly sampled from different health care settings in Boston, Mass; Chicago, Ill; and Los Angeles, Calif. In the cross-sectional study, adult patients (n = 22 462) evaluated their health status and treatment. A sample of these patients (n = 2349) with diabetes, hypertension, coronary heart disease, and/or depression were selected for the longitudinal study. Their hospitalizations and other treatments were monitored and they periodically reported outcomes of care. At the beginning and end of the longitudinal study, Medical Outcomes Study staff performed physical examinations and laboratory tests. Results will be reported serially, primarily in The Journal.

 

Link: JAMA

Chief complaint fatigue: a longitudinal study from the patient's perspective.

Authors: Nelson E.C., Kirk J, McHugo G, Douglass R, Ohler J, Wasson J, Zubkoff M.
The Journal of Family Practice, Vol 6, No. 4, Summer 1987

 

Abstract:
Fatigue is one of the 10 most common reasons for visiting a physician. Yet little is known about its course or impact, from the patient's perspective, on quality of life or utilization of medical care. The Dartmouth COOP Project, a primary care research network, conducted a one-year prospective study comparing chief complaint fatigue (CCF) patients with two age/sex matched comparison groups (N = 243). Results show that almost 67% of the CCF patients improved over one year; however, they had much higher utilization rates and substantial limitations in physical and emotional function. Fatigue was associated with physical symptoms and interference with many aspects of daily life. We conclude that fatigue has a powerful, adverse effect on quality of life. We hope the findings may help physicians to better understand and treat patients who seek care for fatigue.

 

Link: PubMed

Do primary physicians actually manage their patients' fee-for-service care?

Authors: Dietrich A.J., Nelson E.C., Kirk JW, Zubkoff M, O'Connor G.T.
 JAMA. Vol 259, No. 21, June 3, 1988

 

Abstract:
In what proportion of a patient's total health care is the primary physician involved? By means of calendar diaries and telephone interviews, 211 primary care patients from community practices of the Dartmouth Primary Care Cooperative Information Project were followed prospectively for one year. We found that a substantial proportion of care was managed (that is, either actually provided or coordinated in advance) by the patient's primary physician. Specifically, criteria for a primary physician's role in management were met by 75% of 1379 ambulatory visits to physicians, 33% of 786 visits to nonphysician health care providers, 81% of 26 nonemergency hospitalizations, and 78% of 2769 prescriptions. Primary physicians in these settings appear to function as case managers even when they are not participating in formal managed-care systems.

 

Link: PubMed

Functional health status levels of primary care patients.

Authors:  Nelson E.C, Conger B, Douglass R, Gephart D, Kirk J, Page R, Clark A, Johnson K, Stone K,
Wasson J, Zubkoff M.
 JAMA, Vol 249, No. 24,  June 1983

 

Abstract:
A cross-sectional study was conducted on functional status of adults visiting primary care practices. Limitations in physical and mental function were assessed independently in 28 practices by patients (N = 1,227) and physicians (N = 47) using a simple global index of disability. Results indicated 12% of patients rated their physical limitations as major and 8% rated major emotional limitations during the past month. Comparable assessments by physicians were 5% and 4%, respectively. Differences between patients and physicians were statistically significant and are demonstrated to be clinically relevant. Patients' functional limitations were associated with increased utilization of ambulatory care, older age, lower level of education, unemployment, and a primary diagnosis of a chronic condition. We conclude that functional status can be routinely recorded in medical practice to help describe severity, predict utilization, and improve the physician-patient relationship.

 

Link: PubMed

Dr. Steven Woloshin

 
View authors entire bibliography here

Patients' Knowledge, Beliefs, and Distress Associated with Detection and Evaluation of Incidental Pulmonary Nodules for Cancer: Results from a Multicenter Survey.

Authors: Freiman MRClark JASlatore CGGould MKWoloshin SSchwartz LMWiener RS.
Journal of Thoracic Oncology​ 
May 2016 Volume 11, Issue 5, Pages 700–708

 

Abstract:
INTRODUCTION: 
Pulmonary nodules are detected in more than 1 million Americans each year. Prior qualitative work suggests that the detection of incidental pulmonary nodules can be burdensome for patients, but whether these findings generalize to a broader sample of patients is unknown. We categorized patients' knowledge, beliefs, and distress associated with detection and evaluation of a pulmonary nodule, as well as their impressions of clinician communication.
METHODS: 
We administered a cross-sectional survey to adults with an incidental pulmonary nodule who were recruited from a rural medical center, an urban safety net hospital, and a Veterans Affairs hospital.
RESULTS: 
Of the 490 individuals mailed surveys, 244 (50%) responded. Median nodule size was 7 mm, mean patient age was 67 years, 29% of respondents were female, and 86% were white. A quarter of the respondents (26%) reported clinically significant distress related to their nodule, our primary outcome, as measured by the Impact of Event Scale. Patients reported multiple concerns, including uncertainty about the nodule's cause (78%), the possibility of cancer (73%), and the possible need for surgery (64%). Only 25% of patients accurately estimated their lung cancer risk (within 15% of their actual risk); overall, there was no correlation between perceived and actual risk (r = -0.007, p = 0.93). The 23% of patients who did receive information on cancer risk from their provider were more likely to find this information reassuring (16%) than scary (7%).
CONCLUSION: 
A quarter of patients with incidental pulmonary nodules experienced clinically significant distress. Knowledge about cancer risk and evaluation was poor. Clinician communication may help bridge knowledge gaps and alleviate distress in some patients

 

Link: Journal of Thoracic Oncology​

The Drug Facts Box: Improving the communication of prescription drug information.

Authors: Schwartz LMWoloshin S.
PNAS 2013 Aug 20, 110(Suppl 3): 14069–14074.

 

Abstract:
Communication about prescription drugs ought to be a paragon of public science communication. Unfortunately, it is not. Consumers see $4 billion of direct-to-consumer advertising annually, which typically fails to present data about how well drugs work. The professional label--the Food and Drug Administration's (FDA) mechanism to get physicians information needed for appropriate prescribing--may also fail to present benefit data. FDA labeling guidance, in fact, suggests that industry omit benefit data for new drugs in an existing class and for drugs approved on the basis of unfamiliar outcomes (such as depression rating scales). The medical literature is also problematic: there is selective reporting of favorable trials, favorable outcomes within trials, and "spinning" unfavorable results to maximize benefit and minimize harm. In contrast, publicly available FDA reviews always include the phase 3 trial data on benefit and harm, which are the basis of drug approval. However, these reviews are practically inaccessible: lengthy, poorly organized, and weakly summarized. To improve accessibility, we developed the Drug Facts Box: a one-page summary of benefit and harm data for each indication of a drug. A series of studies--including national randomized trials--demonstrates that most consumers understand the Drug Facts Box and that it improves decision-making. Despite calls from their own Risk Communication Advisory Committee and Congress (in the Affordable Care Act) to consider implementing boxes, the FDA announced it needs at least 3-5 y more to make a decision. Given its potential public health impact, physicians and the public should not have to wait that long for better drug information.

 

Link: PNAS

Using a Drug Facts Box to Communicate Drug Benefits and Harms: Two Randomized Trials

Authors: Lisa M. Schwartz, , MS; Steven Woloshin,  H. Gilbert Welch
Annals of Internal Medicine, Vol 150, No. 8, April 2009

 

Abstract:
Direct-to-consumer prescription drug ads typically fail to provide fundamental information that consumers need to make informed decisions: data on how well the drug works.

 

Link: Annals.org

The Effectiveness of a Primer to Help People Understand Risk: 

Two Randomized Trials in Distinct Populations

 
Authors: Steven Woloshin, Lisa M. Schwartz, , 
H. Gilbert Welch
Annals of Internal Medicine, Vol. 146, No. 4, February 20th, 2007

 

Abstract:
People need basic data interpretation skills to understand health risks and to weigh the harms and benefits of actions meant to reduce those risks. Although many studies document problems with understanding risk information, few assess ways to teach interpretation skills.

 

Link: Annals.org

'The thing is not knowing': patients' perspectives on surveillance of an indeterminate pulmonary nodule.

Authors: Wiener RSGould MKWoloshin SSchwartz LMClark JA.
Health Expect 2015 Jun;18(3):355-65

 

Abstract:
BACKGROUND:
The hundreds of thousands of patients found to have a potentially malignant pulmonary nodule each year are faced with tremendous uncertainty regarding what the nodule is and how it should be evaluated.
OBJECTIVE:
To explore patients' responses to the detection and evaluation of a pulmonary nodule.
DESIGN:
Qualitative study based on four focus-group discussions. We performed inductive analysis using principles of grounded theory to identify themes relating to responses to the nodule and strategies to manage uncertainty.
SETTING AND PARTICIPANTS:
Twenty-two patients from two medical centres who were undergoing surveillance for an indeterminate pulmonary nodule.
RESULTS:
Patient responses to an indeterminate pulmonary nodule were varied and evolved over time. Although almost all patients reported an initial fear about cancer, subsequent depictions of the nodule diverged into four types defined on two dimensions: cognitive ('it's cancer' vs. 'I don't know what it is' vs. 'it's nothing serious') and emotional (anxiety vs. equanimity). Most eventually accepted that the nodule was unlikely to be malignant; however, some remained anxious, convinced the nodule could turn into cancer at any time and should be aggressively monitored for life. Patients used results of surveillance tests as well as their own strategies (e.g. vigilance for symptoms, information-seeking, contemplating and controlling modifiable risk factors, avoidance, faith) to manage uncertainty.
CONCLUSIONS:
Surveillance for a pulmonary nodule can weigh heavily on some patients for months or years. Our findings may help clinicians prepare patients with a newly detected pulmonary nodule for the burden of the prolonged uncertainty of surveillance.

 

Link: NCBI

The Benefits and Harms of Mammography Screening. Understanding the Trade-offs

Authors: Steven Woloshin, Lisa M. Schwartz, , H. Gilbert Welch
JAMA, Vol 303, No. 2, February 2010

 

Abstract:
Intuitively, cancer screening makes good sense—find cancers early and treat them before they become dangerous. The intensely negative response to the US Preventive Services Task Force (USPSTF) recommendations about mammography, that women with their physicians might decide to screen later or less often, is not very surprising.... However screening is not simply about benefit, it also causes important harms. To make good decisions about  screening, patients should understand the trade-offs.

 

Link: Dartmouth Atlas of Healthcare

Know Your Chances: Understanding Health Statistics

Published: Berkeley (CA): University of California Press; 2008
 
Authors: Steven Woloshin MD, MS, Lisa M. Schwartz, MD, MS, H. Gilbert Welch, MD, MPH.

 

Abstract:
The goal of this book is to help you better understand health information by teaching you about the numbers behind the messages—the medical statistics on which the claims are based. The book will also familiarize you with riskcharts, which are designed to help you put your health concerns in perspective. By learning to understand the numbers and knowing what questions to ask, you’ll be able to see through the hype and find the credible information—if any—that remains.

 

Link: NCBI.com

Can Patients Interpret Health Information? An Assessment of the Medical Data Interpretation Test

Authors: Steven Woloshin, Lisa M. Schwartz, H. Gilbert Welch, 
Medical Decision Making, Vol. 25, May/June 2005.

 

Abstract:

To establish the reliability/validity of an 18-item test of patients’ medical data interpretation skills. Design . Survey with retest after 2 weeks. Subjects . 178 people recruited from advertisements in local newspapers, an outpatient clinic, and a hospital open house. Results . The percentage of correct answers to individual items ranged from 20% to 87%, and medical data interpretation test scores (on a 0- 100 scale) were normally distributed (median 61.1, mean 61.0, range 6-94). Reliability was good (test-retest correlation = 0.67, Cronbach’s alpha = 0.71). Construct validity was supported in several ways. Higher scores were found among people with highest versus lowest numeracy (71 v. 36, P < 0.001), highest quantitative literacy (65 v. 28, P <0.001), and highest education (69 v. 42, P = 0.004). Scores for 15 physician experts also completing the survey were significantly higher than participants with other postgraduate degrees (mean score 89 v. 69, P < 0.001). Conclusion . The medical data interpretation test is a reliable and valid measure of the ability to interpret medical statistics.

 

Link: VA Outcomes.com

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