Gardner, Timothy B. MD*; Kennedy, Abigail T. BS*; Gelrud, Andres MD†; Banks, Peter A. MD‡; Vege, Santhi Swaroop MD§; Gordon, Stuart R. MD*; Lacy, Brian E. PhD, MD*
Chronic pancreatitis (CP) is a progressive, irreversible, fibrosing disease of the pancreas caused by a variety of factors including alcohol use, genetic predisposition, autoimmune triggers, and recurrent acute pancreatitis.1 Regardless of the etiology, symptoms almost always include abdominal pain, which is often difficult to control.2,3 As a result, many patients develop chronic pain syndromes with subsequent diminishment in their ability to work and health-related quality of life (QOL).4,5
The QOL of CP patients has been evaluated previously using a variety of questionnaires, including the Medical Outcomes Survey 36-Item Short-Form Health Survey, the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire, and the Quality of Life Questionnaire-Pancreatic Cancer Module.6-8 These studies have all demonstrated that patients with CP have a substantially impaired QOL. However, these surveys were not targeted specifically to evaluate the QOL of CP patients. Older studies from the United States have found similar results.9
Despite the prevalence of this disorder and its impact on patients' QOL, no American study has specifically addressed the impact of CP on patient employment status. In addition, there are limited data on the experience of CP patients with the health care system. For example, it is unclear how patients perceive their treating provider, which type of provider they find most helpful in managing their symptoms, or how they are treated in emergency wards.
The aims of our study were to determine the effect of CP on patients' employment status and evaluate the health care experience of American patients with CP.
MATERIALS AND METHODS
Consecutive patients with CP presenting for outpatient clinical evaluation at 4 US tertiary care centers with experience in managing pancreatic disease-Dartmouth-Hitchcock Medical Center (NH), the University of Cincinnati (Ohio), Brigham and Women's Hospital (Mass), and Mayo Clinic Rochester (Minn)-were included. The study period was from July 1, 2006 to October 31, 2007. Patients were determined to have CP after a clinical evaluation by pancreatologists at each center. The protocol was approved by the institutional review board at each center. The patients did not receive remuneration for their participation.
Subjects were queried at the conclusion of their clinic visit if they would like to participate in the study. If amenable, they were given the questionnaire to complete anonymously. Completed surveys were mailed back to the coordinating center (Dartmouth) for processing. The treating centers did not have access to individual patient responses.
The survey instrument consisted of 72 items developed by the authors (T.B.G., P.A.B., and B.E.L.), experts in the care of patients with CP. Questions consisted of best answer, comparative, and true/false formats. The first 36 items asked for information about patients' knowledge of CP, specifically focusing on areas of epidemiology, pathophysiology, and therapy. Items 37 to 65 asked for information about how CP affected patient's lives, including personal, professional, and social impacts. Several of these questions were based on the Work Productivity and Activity Impairment Questionnaire, a validated survey instrument that quantifies work productivity loss and activity impairment.10 Items 66 to 72 focused on demographic, employment status, and income information (for the entire text of the questionnaire, see Supplementary Appendix 1, Supplemental Digital Content 1, which shows the survey, http://links.lww.com/MPA/A19).
The survey was first evaluated by 7 patients without CP in the Dartmouth-Hitchcock gastroenterology clinic. The patients reviewed the questionnaire for syntax, grammar, and readability. After their evaluation, modifications were made to the questionnaires, and this group of patients was then asked to review the survey for appropriateness. These responses were then incorporated into the final version of the questionnaire.
Data Handling and Statistical Methods
Data were entered independently by 2 researchers (T.B.G. and A.T.K.) into a spreadsheet. Data analysis was then performed using the JMP software (SAS Institute, Inc, Cary, NC) and Microsoft Excel (Microsoft Corp, Redmond, Wash).
Descriptive statistics were used to characterize the patients and their responses. Comparisons were conducted using the Student t test for continuous variables and Fisher exact probability test whenever appropriate for categorical values. Univariate dichotomous and multivariate regression models were used to evaluate the effect of various domains on income. In the multivariate analysis, P values for continuous variables, and odds ratios for nominal variables, were used. Statistical significance was defined as P < 0.05.
One hundred twenty-three questionnaires were returned to the central coordinating center. Of these 123 surveys, 12 were incomplete, leaving 111 completed surveys that were used for data analysis.
Patient characteristics are displayed in Table 1. The median duration of CP was 8.2 years (range, 1 month to 31 years). The patients came from 13 American states. Eighty-nine percent of the patients reported abdominal pain as a symptom of their disease (Table 2).
Most patients earned less than $25,000 (US) per year, and only 30% were earning more than $50,000 per year (Fig. 1). Seventy-four percent reported that CP adversely affected their work lives compared with 60% who reported a negative effect on their social lives and 46% who noted an adverse effect on their relationship with a spouse/significant other (Table 3). The ability to complete daily activities was the area of life most affected in CP patients (28%), followed by work life in 26%.
In the week before completing the survey, employed patients reported a median absence of 14 hours (range, 0-40 hours) from their job due to their CP symptoms. These patients were only able to work a median of 24 hours. On a 1-to-10 nominal scale, with 1 being not affected and 10 being the most affected, the patients reported that CP affected their work productivity at a median level of 2.5 (range, 1-6), compared with those who reported that CP affected their ability to carry out normal daily activities at a median level of 5.0 (range, 2-10; P < 0.02). For 34% of patients, their most important concern was that their CP symptoms would interfere with their professional lives compared with 22% where their most important concern was shortening of their lifespan; 18%, passing CP on to their children; and 13%, CP developing into cancer (P < 0.01). In the subgroup analysis of patients who were not working due to their CP, 82% were most concerned that their CP symptoms were interfering with their professional lives.
The patients consulted a median of 3 different health care providers with a median of 5 times before diagnosis of CP. The patients felt gastroenterologists (81%) to be the most qualified to manage CP, compared with surgeons (8%), primary care physicians (6%), and alternative medicine providers (4%; all groups: P < 0.01). Gastroenterologists were believed to be more able than primary care physicians to adequately address patient concerns regarding CP (78% vs 65%; P < 0.05).
Figure 2 illustrates CP patients' experiences during emergency department visits. On at least 1 visit to the ED, 80% perceived that they were not treated with respect and dignity, 45% had been labeled an alcoholic, and 29% had been labeled a drug seeker. In addition, 40% reported that they had been discharged while still in significant pain.
Concerning the ability to obtain health/life insurance, 20% and 15% were denied/had difficulty obtaining life and health insurance, respectively, due to CP. Subgroup analyses in patients with CP of more than 5 years and in those aged younger than 50 years revealed no significant differences from the combined group experience.
This study is the first uniquely American study to formally evaluate the employment patterns, economic impact, and health care experience of patients with CP. We found that patients with CP have high unemployment rates, below average median personal income, and miss significant time at work due to their illness. In addition, patients with CP frequently do not have their health care concerns adequately addressed, have the perception of disparagement when visiting emergency departments, and have difficulty obtaining health and life insurance. These findings highlight the need for comprehensive efforts to improve the employment patterns and health care experience of patients with this disease.
A striking finding was the impact of CP on work productivity. Although it is difficult to accurately determine the loss of work productivity based on this study, the patients reported that CP affected their work productivity at a median level of 2.5 on a 1-to-10 Work Productivity and Activity Impairment Questionnaire-based nominal scale. This is comparable with the loss of work productivity seen in Crohn disease, chronic obstructive pulmonary disease, and urologic dysfunction.11-13 Absenteeism from work and more frequent use of the health care system by CP patients likely contribute to the significant burden of digestive diseases in the United States.14
The findings that more than 35% of patients were unemployed and that most patients earned less than $25,000 annually mirror the employment and income status of cancer survivors.15 For comparison, the mean adjusted gross income in the United States based on individual tax returns in 2006 (the most recent year for which data are available) was $80,218, and the 2008 single-individual poverty threshold was $10,400.16,17 We did not evaluate, however, the type of work that the recipients performed.
The findings that three quarters of the patients had their work lives affected by CP and that one quarter felt that employment was the area most affected by CP provide insight into patients' perception of this problem. Interestingly, the patients were more concerned about CP affecting their professional lives than with the disease shortening their lifespan.
An expected result was that many patients sought multiple health care providers before diagnosis of CP. As CP can sometimes be a challenging diagnosis to make, especially in patients with minimal change disease, it is not surprising that patients consulted a median of 3 health care providers before diagnosis.18 Gastroenterologists were also believed to be better at addressing patient concerns regarding and at managing CP. Although there is certainly a referral bias present given that the questionnaire was disbursed at gastroenterology offices, these results suggest that gastroenterology consultation would prove beneficial for patients with this disease.
The number of CP patients who had the perception of mistreatment when visiting the emergency ward is of interest. It is noteworthy that 80% of the CP patients perceived that on at least 1 occasion, they were not treated with respect and dignity in the emergency ward, and 40% reported that they had been discharged while still in significant pain. These findings indicate that comprehensive educational efforts are needed about the clinical symptoms and treatment of CP for practitioners in the emergency ward.
This study has limitations. The patients seen at these 4 study centers may be experiencing a more severe disease than is commonly seen in a community-oriented setting, and therefore, their responses may not be completely applicable to the community at large. In addition, not all patients who were given surveys completed them and the number of patients who were given surveys is not known. Finally, the questionnaire was evaluated in only 7 patients before disbursement and we did not formally validate it with parameters such as internal consistency and reliability. Furthermore, a focus group was not formed. For more appropriate validation, these issues would have been better optimized.
In summary, we have found that high unemployment rates, extensive lost time from work, and the perception of disparagement when visiting the emergency ward all contribute to the significant morbidity associated with this disease. Clinicians must consider these issues when treating CP, so that the most effective therapeutic plan can be offered to these patients. Further comprehensive efforts are also needed to improve the employment patterns and health care experience of patients with CP.
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