Follow-up visit at which patients (n = 91) who were employed at diagnosis reported that they had discontinued employment because of their cancer.
Percentage of patients (n = 82) who discontinued employment because of their cancer and who ranked the indicated factors as a 4 or 5.
Mean ranking by patients (n = 82) of fatigue as a reason for not returning to work based on type of treatment. Fatigue ranking for patients who received chemotherapy (CH) as a component of treatment was significantly greater than for those who did not receive CH (P<.01). RT indicates radiation therapy; Surg, surgery.
Buckwalter AE, Karnell LH, Smith RB, Christensen AJ, Funk GF. Patient-Reported Factors Associated With Discontinuing Employment Following Head and Neck Cancer Treatment. Arch Otolaryngol Head Neck Surg. 2007;133(5):464-470. doi:10.1001/archotol.133.5.464
To evaluate patients' reported reasons for discontinuing employment following treatment for head and neck cancer (HNC). Discontinuing employment is a serious problem for patients with HNC and has an impact on many aspects of their lives.
Prospective, observational outcomes study.
Tertiary care institution.
A total of 666 patients with carcinomas of the head and neck who were treated from January 1, 1998, to October 31, 2004.
Patients provided information about the status of their employment at the time of diagnosis and then at 3, 6, 9, and 12 months after diagnosis. Patients who discontinued employment after treatment rated the importance of 5 factors (eating, speech, appearance, pain or discomfort, and fatigue) in that decision.
Main Outcome Measures
The 5 factors were scored on a 5-point Likert scale (5 being most important) as to their importance in the decision to discontinue work. The relationships of patient, disease, and treatment variables to employment status were evaluated.
Of the 666 patients, 239 were employed at the time of their diagnosis. After treatment, 91 (38.1%) of the 239 reported discontinuing work because of their cancer and treatment. Eighty-two (90.1%) of these 91 patients rated each of the 5 factors. Fatigue had the highest percentage (58.5%) of 4 or 5 ratings, followed by speech (51.2%), eating (45.1%), pain or discomfort (37.8%), and appearance (17.1%). Thirty-seven (40.7%) of the 91 patients who discontinued work returned to work within 1 year of treatment.
Identification of the factors associated with the decision to discontinue work is a first step in providing focused solutions to minimize disability.
Remaining employed is important to cancer survivors for a variety of reasons, including financial status, quality of life, and self-esteem.1- 8 Although most cancer survivors who are of working age who want to return to work are able to do so,1,2,9 cancer survivors experience significantly more work-related problems owing to missed work days than the general population,10 and the economic consequences for those who are disabled following cancer treatment are a substantial societal burden.3
Compared with patients with other types of cancer, those with head and neck cancer (HNC) have the third highest rate of discontinuing work because of their illness.9 Prior studies11- 14 have reported that 28% to 52% of patients with HNC who were employed at the time of their diagnosis were disabled by their illness. With an increase in the survival of many patients with HNC over the past 30 years and an increase in the age at which retirement is anticipated, the importance of returning to work becomes a substantial concern for this group of patients who have previously been presumed to contribute relatively little to the work force.15,16
Cancer survivors' ability to return to work has been associated with a number of clinical and socioeconomic variables.1- 3,8,9,17- 19 These factors include type and stage of cancer,2,3,9,13,17 type of treatment,11,12 alcohol use,13 work place support,3,17 type of work,2,3,17 education level,2,13,17,19 and income.2,8,17- 19 Pain11,12 and fatigue7 resulting from the cancer and its treatment have also been shown to cause patients to discontinue their employment. Many of these factors, including an increased use of multimodality therapy,20- 22 are common in patients with HNC and likely play a role in the high rates of disability following diagnosis and treatment.
Prior studies of employment in patients with HNC have focused on the relationships between physician-designated disability and various demographic and clinical factors. To our knowledge, there have been no in-depth investigations of employment status and patients' reported reasons for their initial decision to discontinue employment. The primary goal of this study was to determine how patients rate the importance of selected cancer- and treatment-related factors (eating, speech, appearance, pain or discomfort, and fatigue) in their decision to discontinue employment after treatment for HNC. The secondary goal of this study was to evaluate associations between discontinuing employment and disease, treatment, and demographic variables.
Participants in this prospective, observational study included 666 patients whose HNC was managed at the University of Iowa Hospitals and Clinics, Iowa City, and who were enrolled in a longitudinal outcomes assessment project (OAP) from January 1, 1998, to June 30, 2004. Patients were eligible if they were 21 years or older with a carcinoma of the upper aerodigestive tract, excluding skin cancers and cancers of the thyroid gland. The OAP was conducted with the approval of the University of Iowa investigational review board.
Participants filled out a battery of surveys at the time of their diagnosis and then at 3, 6, 9, and 12 months after their diagnosis. Participants were asked about the status of their employment prior to treatment and were subsequently asked about any change in employment at the 4 follow-up visits within the first year. If their employment status changed owing to their cancer or its treatment, patients were asked to rate the impact of 5 factors (eating, speech, appearance, pain or discomfort, and fatigue) on their decision to discontinue employment. Ratings were provided on a 5-point Likert scale with the end points labeled as “not important” (1) and “very important” (5). Demographic, disease, and treatment data were also collected on the patients participating in the OAP.
All analyses were performed using SPSS statistical software (version 13.0; SPSS Inc, Chicago, Ill). Reasons cited for change in employment owing to cancer were examined, with mean values categorized by patient, disease, and treatment characteristics. Analyses of variance were performed to compare the distribution of scores provided by different patient groups, and an independent sample t test was performed to compare ratings of fatigue provided by patients who received chemotherapy with the ratings of those who did not.
The OAP accrued 666 patients from January 1, 1998, to June 30, 2004, representing 67.2% of the 991 individuals eligible for accrual during that time period who met the longitudinal project's eligibility criteria. (Of the remaining 325 eligible patients, 170 refused to participate and 155 were missed.)
Most of the 666 patients in this study were men (440 [66.1%]) and were younger than 65 years (431 [64.7%]) (Table 1). Pretreatment employment status indicated that 239 patients (35.9%) were employed full-time (205) or part-time (34), 337 (50.6%) were not employed, and 23 (3.5%) were never employed. Employment status at the time of diagnosis was unknown for 67 (10.1%). The vast majority of patients who were employed at the time of diagnosis (612 [91.6%]) were younger than 65 years, whereas 151 (44.8%) of 337 unemployed were younger than the usual age for retirement. The mean age of those employed full-time was 52 years vs 58 years for those who were employed part-time and 69 years for those who were not employed.
Table 2 shows the patient, disease, and treatment characteristics by change in posttreatment employment status for the 239 patients who were employed prior to treatment. Of the 91 patients who quit work because of their cancer, 37 (40.7%) returned to work within the first year, whereas 54 (59.3%) did not return to work within the first year. Modest differences were noted between these 2 groups in age, stage, site of the cancer, and treatment. The 37 who returned to work were slightly younger and had a higher percentage of early-stage disease than the 54 who did not return to work.
When the 91 patients who discontinued their employment because of their cancer were compared with the 104 whose employment was not affected by their cancer (69 who had no change in employment and 35 who discontinued employment for reasons other than their cancer), differences were noted in stage and treatment. A higher percentage of patients who discontinued employment presented with advanced-stage disease and were treated with multimodality therapy. These 2 differences between the groups were statistically significant (P<.001).
Change in employment status across the first year was not known for 27 patients. Sixteen patients reported that their employment had changed, but they remained employed (7 full-time and 9 part-time). It is possible that the changes these 16 patients made reflected a less demanding job that they could perform despite functional problems related to their cancer and its treatment. One patient reported a change in employment but his or her posttreatment employment status was unknown. The “other” group was composed of these 44 patients. They were slightly older, with 7 (15.9%) in the 65 years or older age category.
Figure 1 shows the time period at which the 91 patients who were employed at diagnosis cited a change in employment owing to their cancer. Approximately three fourths (75.8%) reported this change in employment at their 3-month follow-up visit.
Figure 2 shows each factor and the percentage of the 82 patients who discontinued work and rated the 5 factors that were given a ranking of 4 or 5, indicating that the factor was an important or very important consideration in their decision to discontinue employment.
These 82 patients considered fatigue as the most important factor in discontinuing employment, with almost 60% rating it as a 4 or a 5 (Figure 2). Nearly half rated eating, speech, and pain or discomfort as an important factor, whereas appearance had little impact on their decision to quit work, with only 17.1% ranking it as a 4 or 5.
Overall, there were no statistically significant differences in the ranking of the 5 factors between patients who returned to work within 1 year and those who did not (Table 3). These 2 groups were very similar in the percentages who rated fatigue, pain or discomfort, and appearance as important in their decision to discontinue work. Although not statistically significant, there were differences in how important they rated eating and speech. Of the patients who returned to work, 13 (37.1%) rated eating as important in the decision to discontinue work compared with 24 (51.0%) of those who did not return to work. Similarly, 14 (40.0%) of the patients who returned to work rated speech as an important factor in discontinuing work compared with 29 (59.6%) of those who did not return to work.
Table 4 shows the mean ratings for each of the 5 factors listed by patient, disease, and treatment characteristics. Higher means reflect a larger impact on the decision to discontinue employment. This table represents the combined data for all 82 patients who quit work.
Speech was an important reason for discontinuing employment among patients with hypopharyngeal tumors (mean rating, 4.2) and among patients 65 years or older (mean rating, 4.7). The mean rating for eating ranged from 2.2 for those treated with an early AJCC stage to 4.0 for those treated with surgery, radiation therapy, and chemotherapy. Although the differences were small, it is interesting to note the slightly higher mean rating for eating and lower mean rating for speech among patients treated with chemotherapy and radiation therapy compared with those treated with surgery and radiation therapy. The demographic, tumor, and treatment variables showed no substantial impact on the ranking of appearance and pain.
Fatigue showed the largest range, from 2.5 (for those treated with surgery alone) to 4.6 (for those treated with all 3 treatment modalities). The highest fatigue ratings were provided by those patients in whom chemotherapy was a component of multimodality treatment (P<.001). Patients treated with radiation therapy and chemotherapy had a mean fatigue score of 4.4.
Figure 3 shows how fatigue had a much greater impact on employment for patients treated with multimodality therapy. Of the 3 multimodality regimens, the highest mean rankings were reported by patients who received chemotherapy as part of their treatment regimen (with radiation therapy or with surgery and radiation therapy). A t test indicated a significant difference (P<.001) in a comparison of fatigue rankings provided by patients who received chemotherapy as a component of their treatment vs those who did not.
In 2002 there were approximately 10 million cancer survivors in the United States, and the 5-year survival for all cancers was increasing.19 Based on a large interview study, Short et al9 found that only selected leukemias and central nervous system cancers had higher rates of disability following treatment than HNC. There have been few studies assessing employment following the treatment of HNC. Unfortunately, many patients with HNC are at an age close to or beyond retirement age, which makes detailed information on the true degree of disability affecting employment difficult to obtain. Many patients with HNC are retired or are able to take an early retirement at the time of treatment.
Several studies have evaluated work-related disability following HNC treatment. In 2 of these studies, patients were deemed to be disabled based on patient self-report that the managing physician told them they were disabled.11,12 The rates of discontinuing work following HNC treatment reported in these and other studies have ranged from 28% to 52% of patients who were employed at the time of diagnosis.11- 14 In the present study, we found that 91 (38.1%) of the 239 patients who were employed at diagnosis discontinued employment because of their cancer, 35 (14.6%) discontinued employment at the time of treatment but did not relate this to their cancer or treatment, 69 (28.9%) continued to work, and 16 (6.7%) changed their employment but continued to work. On follow-up evaluation, 39 (40.7%) of the 91 patients who discontinued employment because of their cancer or treatment returned to work within 1 year. Overall, of the 239 patients working at the time of diagnosis, 51.0% (122 patients) were known to be working at 1 year following treatment. This percentage is consistent with the reported rates of long-term disability in this patient population and points out the high rate of work-related disability associated with HNC. The reported overall rate of returning to work following cancer treatment, derived from a group of heterogeneous studies and cancer types, is 62%.3
Three studies have reported risk factors for HNC-related disability. The identified risk factors included multimodality treatment, advanced age, poor emotional quality of life, poor physical health status, chemotherapy, neck dissection, pain, advanced cancer stage, alcohol abuse, and low education level.11- 13 In the present study, we did not evaluate all of these variables. However, consistent with the earlier studies, a higher percentage of patients who discontinued work because of their cancer or treatment had advanced-stage disease (71 [78.0%] of 91) compared with those who continued to work (31 [44.9%] of 69).13 Interestingly, the stage breakdown was similar between those who returned to work and those who did not. We found that a greater percentage of patients who discontinued work because of their cancer and did not return within 1 year (64%) received multimodality treatment compared with those who continued to work (52%). This finding is consistent with the report by Terrell et al.11 Our study did not evaluate the rate of long-term disability over many years following treatment. However, based on prior studies of employment among cancer survivors, few patients not working at 1 year following treatment would be expected to return to work.9
This study was unique in that patient-reported factors that contributed to the decision of the patients to discontinue employment were evaluated. These factors consisted of functional parameters frequently evaluated in the population of patients with HNC (eating, speech, appearance, and pain or discomfort). In addition, we asked about fatigue, which is a frequent problem for cancer survivors7 but is not frequently considered a large component of the functional evaluation of patients with HNC. We were also able to identify a group of patients who resumed employment within 1 year from among the group that had discontinued work.
Common wisdom would suggest that one of the primary reasons why many patients with HNC do not resume activities outside the home (including work) is an altered appearance. However, our results found that among these 82 contemporary patients with HNC, this was not the case. The factor most frequently rated as important (by 48 patients [58.5%]) in discontinuing employment was fatigue, whereas appearance was least frequently rated as important (by 14 patients [17.1%]) in the decision to discontinue employment (Figure 2). This may reflect changes in the treatment of HNC over the past 10 years. Disfiguring surgical interventions have become a less frequently used mode of treatment, multimodality treatment is now common for almost all advanced-stage disease, and chemotherapy has emerged as a common component of HNC treatment.20- 22 In prior work, both chemotherapy12 and multimodality treatment11 have been related to HNC disability. The influence of multimodality treatment on fatigue is clearly seen in Figure 3, which demonstrates an increasing percentage of patients indicating that fatigue was important in their decision to discontinue employment in going from single-modality therapy to multimodality therapy involving surgery, radiation therapy, and chemotherapy. This study demonstrates that fatigue is a parameter that will likely assume a greater importance in HNC outcome evaluation.
There were no large differences in the percentages of patients who returned to work vs those who did not in the ranking of fatigue, pain, and appearance as important in the initial decision to discontinue work. Unfortunately, among those who returned to work, we do not have information regarding what changed to allow or facilitate their return to work. It is possible that although both fatigue and pain were important in the decision to discontinue work, resolution of these symptoms in some patients allowed a return to work, whereas these symptoms may have persisted in the patients who did not return to work. Conversely, there was a substantially higher number of patients in the group that did not return to work who reported that speech and eating were important in their decision to discontinue work. The functional difficulties of eating and speech may be less likely to resolve with time than pain or fatigue. Appearance was regarded as being of little importance in both groups.
Compared with men, women with HNC have been shown to have a significantly higher rate of disability.9 Over a third (226 [33.9%]) of our study population was made up of women, which is a higher proportion than in previously reported articles.5,12 Approximately one quarter (57 [25.2%]) of the female patients were employed at the time of their diagnosis. Of these, 23 (40.4%) quit because of their cancer. Of the 182 men employed at diagnosis, 68 (37.4%) quit because of their cancer. Although a smaller percentage of women were working at the time of diagnosis, the percentage of men and women who had posttreatment changes in their employment because of their cancer was similar. Women rated speech (3.4), appearance (2.6), and pain (3.2) as more important factors in discontinuing employment than men, with appearance being the category with the biggest difference (0.6) between men and women. However, for both men and women, appearance was of relatively little importance.
In this study, employment status was evaluated as full-time, part-time, unemployed, never employed, or unknown. The level of income or the kind of employment was not included. Lower skill level, more physically demanding jobs, and lower income have been associated with greater disability rates.1,2,9,19 Evaluation of these aspects may have added insight into the return to work for this group of patients with HNC owing to the overrepresentation of low-income individuals in this patient population.24
The factors contributing to the decision to discontinue employment among patients with HNC following treatment may be changing as the treatment of this disease evolves and may reflect more the systemic than the local consequences of treatment. Fatigue is clearly an important symptom in this evolution. It is possible that this symptom is more amenable to intervention than some of the static deficits of eating and speech. Efforts to limit posttreatment disability among patients with HNC should include increasing our knowledge of anticipated symptoms and early intervention for those deficits that may respond to treatment. Identification of the patient-reported factors associated with the decision to discontinue employment is a first step in providing more useful information about employment to patients and identifying interventions to minimize the disability following treatment for HNC.
Correspondence: Gerry F. Funk, MD, Department of Otolaryngology–Head and Neck Surgery, Room 21012 PFP, 200 Hawkins Dr, The University of Iowa Hospitals and Clinics, Iowa City, IA 52242-1093 (email@example.com).
Submitted for Publication: August 1, 2006; final revision received November 21, 2006; accepted December 17, 2006.
Author Contributions: Drs Karnell, Smith, Christensen, and Funk had full access to all the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis. Study concept and design: Buckwalter, Karnell, Christensen, and Funk. Acquisition of data: Karnell and Funk. Analysis and interpretation of data: Buckwalter, Karnell, Smith, and Funk. Drafting of the manuscript: Buckwalter, Karnell, Christensen, and Funk. Critical revision of the manuscript for important intellectual content: Buckwalter, Karnell, Smith, and Funk. Statistical analysis: Buckwalter, Karnell, and Christensen. Obtained funding: Karnell and Funk. Administrative, technical, and material support: Buckwalter, Karnell, and Funk. Study supervision: Buckwalter, Karnell, Smith, and Funk.
Financial Disclosure: None reported.
Funding/Support: This work was supported by National Institutes of Health grant R01 CA106908 through the Office of Cancer Survivorship. Dr Smith has an unrestricted educational/research grant from KLS Martin.
Previous Presentation: This study was presented in part at the American Head and Neck Society 2006 Annual Meeting and Research Workshop on the Biology, Prevention, and Treatment of Head and Neck Cancer; August 20, 2006; Chicago, Ill.
Acknowledgment: We thank Amy Trullinger, BA, who enrolled eligible patients and collected their data for this study.