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Sociodemographic Characteristics And Health Related Quality of Life in Men Attending Prostate Cancer Support Groups
0022-5347/02/1685-2092/0 THE JOURNAL OF UROLOGY® Copyright © 2002 by AMERICAN UROLOGICAL ASSOCIATION, INC.®
Vol. 168, 2092–2096, November 2002 Printed in U.S.A.
DOI: 10.1097/01.ju.0000033591.64733.ef
SOCIODEMOGRAPHIC CHARACTERISTICS AND HEALTH RELATED QUALITY OF LIFE IN MEN ATTENDING PROSTATE CANCER SUPPORT GROUPS DANA KATZ, THERESA M. KOPPIE, DAVID WU, MAXWELL V. MENG, GARY D. GROSSFELD,* NATALIA SADESKY, DEBORAH P. LUBECK* AND PETER R. CARROLL† From the Urology Outcomes Research Group, Department of Urology and Mt. Zion Comprehensive Cancer Center, University of California, San Francisco, San Francisco, California
ABSTRACT
Purpose: Prostate cancer can be associated with anxiety, depression and fears of recurrence and side effects of treatment. Support groups may help meet the needs of patients with cancer by providing treatment information and emotional support. We describe men in prostate cancer support groups and compare them to a national registry. Materials and Methods: Men attending prostate cancer support groups in the San Francisco Bay area completed a questionnaire including sociodemographic and clinical characteristics, health related quality of life items, satisfaction with treatment, relief of prostate cancer symptoms and bother from perceived side effects of treatment. Patients in support groups were compared to men enrolled in a national prostate cancer registry (Cancer of the Prostate Strategic Urological Research Endeavor). Results: Men attending support groups had higher annual income and education levels, lower median serum prostate specific antigen and higher cancer grades than men in Cancer of the Prostate Strategic Urological Research Endeavor. Clinical stage was comparable for the 2 groups. Men in support groups were satisfied with treatment and alleviation from symptoms. Adjusting for ethnicity, marital status, age and type of treatment, sexual function scores were higher in men who attended support groups (p ⫽ 0.001). There was no statistically significant difference in bowel and urinary function between groups, although urinary function approached statistical significance at p ⫽ 0.05. Sexual and bowel bother scores indicated less bother for men in support groups (p ⱕ0.025). Conclusions: Men enrolled in support groups have unique sociodemographic characteristics. Their health related quality of life appears to be better than that of other men with prostate cancer. Whether this is related to support group participation is not known. Additional studies are required to determine whether routine support group participation improves outcomes in men with prostate cancer. KEY WORDS: prostatic neoplasms; self-help groups; quality of life
Diagnosis and treatment of cancer may be associated with anxiety, depression and fears about treatment related side effects and cancer progression. Although such psychosocial morbidity is highly prevalent in men with prostate cancer, many of them believe their physicians do not meet their educational and emotional needs.1, 2 Support groups can help address the psychosocial issues and concerns of patients with cancer by providing a forum where they have access to treatment information as well as emotional support. Moreover, some speculate that support group participation may prolong overall survival of patients with cancer. Spiegel et al randomized women with metastatic breast cancer to standard medical treatment plus support group therapy or standard medical treatment alone.3 All patients receiving medical treatment alone died within 4 years. Of the patients who received support group interaction
with standard treatment 40% were alive at 5 years and 8% were alive at 10 years. Despite data suggesting emotional and clinical benefits of support group participation, men with prostate cancer participate in support groups infrequently. Krizek et al interviewed men with prostate cancer and women with breast cancer.4 Men were significantly less likely to participate in support groups (13%) compared to women (33%). Such variations may be explained by gender differences in coping techniques. Whereas women tend to mobilize resources such as friends and family for emotional support when coping with cancer, men are less likely to seek help or express feelings to other men.5 Benefits of support group participation by men with prostate cancer have not been thoroughly studied, and no reports to date have directly evaluated the impact of prostate cancer support group participation on health related quality of life. We describe the sociodemographic and clinical characteristics of men with prostate cancer who participated in support groups in the San Francisco Bay area and compared them to patients with prostate cancer enrolled in a national disease registry. We also evaluated the impact of support group participation on various health related quality of life domains using validated instruments.
Accepted for publication May 24, 2002. Supported by the McBean Family Foundation and the University of California, San Francisco Prostate Cancer Specialized Program of Research Excellence, National Institutes of Health/National Cancer Institute Grant 1 P50 C89520 to the University of California, San Francisco/Mt. Zion Comprehensive Cancer Center. * Financial interest and/or other relationship with TAP Pharmaceuticals. † Financial interest and/or other relationship with TAP Pharmaceuticals, National Cancer Institute, SWOG, Ablation Technology and AstraZeneca. 2092
CHARACTERISTICS OF MEN ATTENDING PROSTATE CANCER SUPPORT GROUPS MATERIALS AND METHODS
Men with prostate cancer attending prostate cancer support groups in the San Francisco area between July 2000 and February 2001 were enrolled in the study. A network of 10 active support groups contributed patients. Support group leaders and participants were informed in writing regarding the nature and goals of the project. Prior approval of the study protocol was obtained from the Committee on Human Research and Institutional Review Board. Patients were recruited during a regular support group meeting if they met the criteria of age older than 18 years, biopsy proven prostate cancer and attendance in at least 1 support group session. Upon enrollment patients completed a baseline questionnaire that included sociodemographic characteristics, clinical characteristics and health related quality of life domains. Additional questions evaluated patient satisfaction, relief of prostate cancer symptoms and bother from perceived side effects of prostate cancer treatment (see Appendix). Health related quality of life was evaluated using the RAND SF-36 Health Survey-1 (SF-36)6 and the University of California, Los Angeles (UCLA) Prostate Cancer Index (PCI).7, 8 The SF-36 is comprised of 8 scales that assess general physical function, physical role function, bodily pain, general health, vitality/fatigue, social function, emotional role function, mental health and comparative health. The UCLA PCI is comprised of 6 scales that assess urinary function and bother, bowel function and bother, and sexual function and bother. All scales are scored from 0 to 100, where 0 represents the worst functioning and 100 represents the best functioning. Patients in support groups were compared to men with prostate cancer who were enrolled in a national disease registry (Cancer of the Prostate Strategic Research Endeavor, CaPSURE.9, 10 CaPSURE is a longitudinal, observational data base of patients with prostate cancer recruited through a network of urologists at 35 community and academic urology practice sites distributed regionally throughout the United States. At each practice site patients with biopsy proven prostate cancer are invited to join the study in a consecutive fashion as they present for outpatient care. At
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the time of enrollment extensive clinical and demographic information is recorded based on the existing medical record, including type of primary treatment received, patient age, cancer stage, tumor grade and serum prostate specific antigen (PSA) at diagnosis. Initial treatment is defined on the basis of clinical data reported by the physician within 6 months of diagnosis. Initial treatment is categorized as radical prostatectomy, radiation therapy, brachytherapy, hormonal therapy, including medical and surgical, cryosurgery or surveillance. Additional data are recorded prospectively at the time of each office visit subsequent to the baseline visit, including new procedures, treatments and diagnostic tests. Health related quality of life is measured upon enrollment and every 6 months using the SF-36 and the UCLA PCI. Unfortunately, comparable information on patient satisfaction with treatment is not available from CaPSURE. Patients are followed in the data base until death or withdrawal from the study. Institutional review board approval for the study is obtained for each clinic site and patient informed consent for participation is required for data collection. Additional details of the project methodology have been published elsewhere.9 Although CaPSURE does not record support group participation, it was anticipated that such participation was infrequent given prior studies of men with prostate cancer.4 At the time of the study 6,969 patients were enrolled in CaPSURE. A total of 1,966 men with a minimum of 1 year of followup who completed a health related quality of life questionnaire at the time of last followup and who did not chose surveillance as treatment for prostate cancer were selected for analysis. The minimum of 1 year of followup was included as a criterion since men in support groups had been previously diagnosed and treated with a similar interval since treatment. Patients treated with surveillance in CaPSURE were excluded from study since there were no individuals selecting watchful waiting only as treatment in the support groups. Clinical and demographic characteristics of patients in support groups were compared to those from the CaPSURE data base. Clinical data included TNM stage (with T1 and T2 combined into 1 category and patients with T4
TABLE 1. Demographic and clinical characteristics of men in support groups and CaPSURE Characteristic No. pts. No. age (%): 50–60 yrs. 60–70 yrs. Greater than 70 yrs. No. ethnicity (%): White Nonwhite No. relationship (%): Live with spouse or partner Not in relationship/widowed No. household income (%): Less than $20,000 $20,001–$50,000 More than $50,001 No. education level (%): Some high school or less High school/technical school graduate Some college College graduate Graduate or professional school No. stage (%): T1/T2 T3 No. Gleason score (%): 2–6 7 8 Median PSA at diagnosis Median mos. since diagnosis
Support Groups 96
CaPSURE 1,966
p Value 0.053
15 (15.6) 36 (37.5) 45 (46.9)
188 589 955
(10.8) (32.2) (55.2)
90 (91.8) 8 (8.2)
1,599 154
(91.22) (8.78)
83 (84.7) 15 (15.3)
1,429 324
(81.5) (18.5)
12 (14) 38 (44.2) 36 (41.8)
708 720 274
(41.6) (42.3) (16.1)
0 (0.0) 7 (7.5) 20 (21.5) 32 (34.4) 34 (36.6)
281 440 337 309 288
(16.9) (26.6) (20.4) (18.7) (17.4)
82 (91.1) 8 (8.9)
1,579 152
(91.2) (8.8)
46 (51.1) 31 (34.4) 13 (14.4) 8.3 42.4
1,083 (71.4) 261 (17.2) 173 (11.4) 9.13 43.9
0.447 0.428 ⬍0.0001
⬍0.0001
0.576 ⬍0.0001
⬍0.0001 ⬍0.0001
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CHARACTERISTICS OF MEN ATTENDING PROSTATE CANCER SUPPORT GROUPS
TABLE 2. Types of prostate cancer treatments for men in support groups and CaPSURE Treatment
No. All Treatments for Support Group Pts. (%)
No. All Treatments for CaPSURE Pts. (%)
98 55 (56.1) 130 (13.3) 41 (41.8) 1 (1.0) 44 (44.9) 24 (24.5) 68 (69.4)
1,996 579 (29.1) 84 (4.2) 922 (44.3) 149 (7.5) 865 (43.3) 163 (3.0) 706 (35.9)
Total Radiotherapy Brachytherapy Radical prostatectomy Cryotherapy Hormonal therapy Other More than 1 treatment
excluded from analysis), Gleason score, PSA at diagnosis and time since diagnosis. All statistical analyses were conducted using SAS software (version 8.2, SAS Institute, Cary, North Carolina). The chisquare test was calculated to assess differences for categorical variables such as age, ethnicity, relationship, household income and education level. A multivariate regression model was specified to evaluate differences between health related quality of life scores for support group participants and CaPSURE participants. This model adjusted for age at diagnosis, marital status, ethnicity and treatment. RESULTS
Sociodemographic characteristics of patient groups are summarized in table 1. There were no differences in age or ethnicity between support group and CaPSURE participants. Men in support groups were more likely to have higher annual income (p ⬍0.0001) and educational level (p ⬍0.0001) than those in CaPSURE. Patients from both groups were equally likely to report being involved in a significant relationship. Men in support groups attended meetings frequently with 80% attending meetings on a monthly or weekly basis. Table 1 also summarizes clinical characteristics of these 2 patient populations. Median PSA at diagnosis of men in support groups was lower than that of CaPSURE patients (8.3 and 9.1 ng./ml., respectively, p ⫽ 0.032). However, support group participants had significantly higher Gleason scores than men in CaPSURE (p ⬍0.0001). Neither clinical stage nor time from diagnosis differed between the 2 groups. Information on treatment is reported in table 2. Of 98 support group patients 68 (69.4%) reported receiving 2 or more treatments for a total of 178 treatments reported. Of the support groups 56% received radiotherapy, and 42% underwent radical prostatectomy as part of overall treatment, TABLE 3. Satisfaction with treatment, side effects, relief of symptoms and frequency of visits for men in support groups Characteristic (No. pts.) Satisfaction with treatment (101): Extremely satisfied Satisfied Dissatisfied Neither satisfied nor dissatisfied No treatment yet Side effects of treatment (106): No side effects Not at all bothered Slightly bothered Moderately bothered Very bothered Extremely bothered No treatment yet Relief of symptoms (105): Very satisfied Satisfied Neither satisfied nor dissatisfied Dissatisfied Not applicable
No. Frequency (%) 33 (32.7) 44 (43.6) 5 (5.0) 11 (10.9) 8 (7.9) 11 (10.4) 5 (4.7) 31 (29.3) 33 (31.1) 11 (10.4) 3 (2.8) 12 (11.3) 28 (26.7) 36 (34.3) 15 (14.3) 1 (0.95) 25 (23.8)
TABLE 4. SF-36 scores of men in support groups and CaPSURE Support Groups
SF-36
Physical functioning: No. Mean Range Physical role: No. Mean Range Emotional role: No. Mean Range Vitality/fatigue: No. Mean Range Social functioning: No. Mean Range Bodily pain: No. Mean Range Mental health: No. Mean Range General health: No. Mean Range Health compared to 1 yr.: No. Mean Range * Adjusted for ethnicity, relation,
CaPSURE
p Value Adjusted* 0.0017
88 88.2 0–100
2,235 76.5 0–100
90 83.6 0–100
2,209 66.3 0–100
90 85.9 0–100
2,211 77.9 0–100
84 70.8 0–100
2,235 61.7 0–100
88 90.3 25–100
2,236 84.4 0–100
88 90.2 37–100
2,237 83.1 0–100
84 81.7 32–100
2,236 77.7 0–100
88 77.6 8.3–100
2,249 67.0 0–100
0.0015
0.06
0.0001
0.09
0.0028
0.04
0.0007
0.39 88 54.8 0–100 age and type
2,248 55.9 0–100 of treatment.
TABLE 5. UCLA PCI scores for men in support groups and CaPSURE UCLA PCI Scales Urinary function: No. Mean Range Bowel function: No. Mean Range Sexual function: No. Mean Range Urinary bother: No. Mean Range Bowel bother: No. Mean Range Sexual bother: No. Mean Range * Adjusted for ethnicity,
Support Groups
CaPSURE
p Value Adjusted* 0.052
93 82.2 0–100
2,261 78.6 0–100
94 86.2 39.25–100
2,237 84.2 6.25–100
94 31.7 0–90.625
2,208 21.3 0–100
92 78.8 0–100
2,230 73.4 0–100
92 86.7 25–100
2,221 81.4 0–100
0.46
0.001
0.051
0.025
⬍0.0001
92 2,069 57.6 42.5 0–100 0–100 relation, age and type of treatment.
and 45% received hormonal therapy. In contrast, only 35.9% of CaPSURE patients received more than 1 treatment. CaPSURE patients were less likely to receive radiotherapy. Neither group reported receiving chemotherapy. A total of 13% of men in support groups and 4.2% in CaPSURE reported brachytherapy as a treatment. Table 3 presents information on satisfaction with treatment and relief from prostate cancer symptoms for men who attended support groups. Patients in support groups were generally satisfied with treatment (76.3%). Perceived bother from prostate
CHARACTERISTICS OF MEN ATTENDING PROSTATE CANCER SUPPORT GROUPS
cancer treatment side effects was low in this group as well. Of the 94 patients who received treatment 47 (50%) reported either no bother or slight bother from side effects of prostate cancer treatment. Most men in support groups were satisfied with prostate cancer symptom relief (61%). Health related quality of life scores of patients in support groups and CaPSURE patients are compared in tables 4 and 5. These scores were adjusted for ethnicity, marital status, age at diagnosis and treatment. Since the men were free not to answer questions, sample sizes vary from 1 scale to another. Men in support groups had higher physical function role, vitality/fatigue, mental health, general health and health compared to 1 year ago on the SF-36 than men enrolled in CaPSURE (table 4). With the exception of health compared to 1 year ago, these differences were statistically significant. For the UCLA PCI men in support groups had significantly higher sexual function scores (p ⫽ 0.0009) as well as sexual bother scores (p ⫽ 0.0006), indicating better function and less bother (table 5). Urinary and bowel function scores were also somewhat higher for men who participated in support groups, although these differences were not statistically significant. However, men in support groups had significantly higher urinary and bowel bother scores, indicating less urinary and bowel bother, compared to men enrolled in CaPSURE (p ⫽ 0.04 and 0.02, respectively).
DISCUSSION
Psychosocial adaptation is generally poor among men diagnosed with any type of cancer.11 Despite a positive association between emotional support and adaptation to the diagnosis of cancer,12 men continue to be less likely than women to provide, receive and seek social support.13 A possible mechanism by which such support can be gained is through participation in a prostate cancer support group. However, few studies to date have addressed the benefits, if any, of support group participation by men with prostate cancer and how those who participate in support groups differ from those who do not. Therefore, we evaluated the sociodemographic characteristics, clinical characteristics and health related quality of life of men with prostate cancer who participate in support groups in the San Francisco area and compared them to men enrolled in CaPSURE. Although CaPSURE does not specifically record support group participation, it was anticipated that such participation would be infrequent given prior studies in this patient population.4 We found that support group participants had greater financial resources and higher levels of education compared to patients enrolled in CaPSURE. Of patients in a support group 42% earned greater than $50,000 per year and 71% reported having a college degree or higher. Of those enrolled in CaPSURE only 16.6% reported an annual income greater than $50,000 and 36.2% reported having achieved a college degree or higher. Crawford et al administered telephone surveys to 1,000 men with prostate cancer from the US TOO support group membership list.2 These patients either attended support group meetings or expressed interest in support group participation. Men in US TOO were generally well educated with 41% having a college degree or higher, and approximately 33% of the patients surveyed had an annual income of $50,000 or more. Coreil and Behal surveyed 405 men recruited from 38 Man-to-Man support groups in Florida, and 21% of the surveyed population had an income greater than $50,000 and 40% had received a college degree or higher.14 Although our figures regarding income and education were higher than those reported by Crawford et al, and Coreil and Behal, such differences can be attributed to regional as well as temporal variation. These data suggest that men with higher education levels and income may have more access to health related services and, therefore, may be
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more likely to take an active role in the health care process, including support group participation. We also found that men who attend support groups do so frequently, with 87% attending group meetings on a weekly to monthly basis. Coreil and Behal found that about a quarter of patients in support groups surveyed took a leadership role within the group,14 which suggests that men who actively participate in support groups may be invested in the group. An important finding in our study was that men in support groups had more favorable general and disease specific health related quality of life scores compared to those in CaPSURE, despite the observation that men in support groups were undergoing more treatment. Better general health related quality of life may reflect the improved outlook and alleviation of anxiety provided by support group participation, or it may be due to the higher sociodemographic profile of men in support groups. We also found that men in support groups had higher sexual function than those in CaPSURE. The 2 groups did not demonstrate statistically significant differences with respect to urinary and bowel function. Such findings may be due to either the psychological benefits of support group participation, disease and treatment related differences, or improved access to treatment for erectile dysfunction or erectile aids. However, it is interesting to note that bother scores for support group participants in sexual, urinary and bowel categories were significantly higher than bother scores in the nonsupport group population, indicating less bother. This finding suggests that participation in support groups may alleviate anxiety and level of concern with respect to sexual, urinary and bowel function. Our study is one of few to show that support group participants may not be representative of the entire population of patients with prostate cancer. To our knowledge it is the only study to show that support group participants appear to enjoy a better health related quality of life compared to those who do not participate in support groups. The reasons for these findings are unclear and, although they could relate to support group participation, they may be related to the unique sociodemographic profile of men in support groups. If, however, health related quality of life outcomes or satisfaction with treatment could be improved with support group participation, such intervention could easily be implemented given the number of support groups in communities throughout the United States. Certain populations, such as black men with prostate cancer, may benefit from such intervention given that the health related quality of life appears to be worse than that of white men with prostate cancer.15 Such men are not well represented in support groups currently. It must be recognized that this study has limitations. A retrospective, cross-sectional study has inherent biases. We cannot show a causative relationship between support group participation and health related quality of life, although we can show an association. In the absence of a randomized controlled trial, the true relationship between support group participation and disease or health related quality of life outcomes cannot be determined. We are currently collecting prospective data from the support group population as part of an ongoing project to explore the effects of support group participation on long-term clinical and health related quality of life outcomes in men with prostate cancer. A randomized trial of psychosocial support is also under way. In studies such as ours there may be a volunteer bias as the type of patient who enrolls in such a study may have a more favorable health related quality of life. In addition, we sampled men from support groups in the San Francisco Bay area who may not be representative of all men with prostate cancer who participate in support groups nationally.
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CHARACTERISTICS OF MEN ATTENDING PROSTATE CANCER SUPPORT GROUPS CONCLUSIONS
REFERENCES
Men in support groups have higher income and educational levels than men who are not in support groups. Support group patients generally had higher general and disease specific health related quality of life scores than nonsupport group patients. Although there was no significant difference in bowel and urinary function between the 2 groups, sexual function scores were higher for men who attended support groups. In addition, sexual, urinary and bowel bother scores were higher for support group patients, indicating less bother. Thus, further studies should be performed to evaluate whether support group participation provides any survival or health related quality of life benefit for men with prostate cancer as well as for other cancers.3
1. Cliff, A. M. and MacDonagh, R. P.: Psychosocial morbidity in prostate cancer: II. A comparison of patients and partners. BJU Int, 86: 834, 2000 2. Crawford, E. D., Bennett, C. L., Stone, N. N., Knight, S. J., DeAntoni, E., Sharp, L. et al: Comparison of perspectives on prostate cancer: analyses of survey data. Urology, 50: 366, 1997 3. Spiegel, D., Bloom, J. R., Kraemer, H. C. and Gottheil, E.: Effect of psychosocial treatment on survival of patients with metastatic breast cancer. Lancet, 2: 888, 1989 4. Krizek, C., Roberts, C., Ragan, R., Ferrara, J. J. and Lord, B.: Gender and cancer support group participation. Cancer Pract, 7: 86, 1999 5. Volkers, N.: In coping with cancer, gender matters. J Natl Cancer Inst, 91: 1712, 1999 6. Stewart, A. L., Greenfield, S., Hays, R. D., Wells, K., Rogers, W. H., Berry, S. D. et al: Functional status and well-being of patients with chronic conditions. Results from the Medical Outcomes Study. JAMA, 262: 907, 1989 7. Litwin, M. S., Hays, R. D., Fink, A., Ganz, P. A., Leake, B., Leach, G. E. et al: Quality-of-life outcomes in men treated for localized prostate cancer. JAMA, 273: 129, 1995 8. Litwin, M. S., Hays, R. D., Fink, A., Ganz, P. A., Leake, B. and Brook, R. H.: The UCLA Prostate Cancer Index: development, reliability, and validity of a health-related quality of life measure. Med Care, 36: 1002, 1998 9. Lubeck, D. P., Litwin, M. S., Henning, J. M., Stier, D. M., Mazonson, P., Fisk, R. et al: The CaPSURE database: a methodology for clinical practice and research in prostate cancer. CaPSURE Research Panel Cancer of the Prostate Strategic Urologic Research Endeavor. Urology, 48: 773, 1996 10. Lubeck, D. P., Litwin, M. S., Henning, J. M. and Carroll, P. R.: Measurement of health-related quality of life in men with prostate cancer: the CaPSURE database. Qual Life Res, 6: 385, 1997 11. Fife, B. L., Kennedy, V. N. and Robinson, L.: Gender and adjustment to cancer: clinical implications. J Psychosoc Oncol, 12: 1, 1994 12. Helgeson, V. S. and Cohen, S.: Social support and adjustment to cancer: reconciling descriptive, correlational, and intervention research. Health Psychol, 15: 135, 1996 13. Ashton, W. A. and Fuehrer, A.: Effects of gender and gender role identification of participant and type of social support resource on support seeking. Sex Roles, 28: 461, 1993 14. Coreil, J. and Behal, R.: Man to man prostate cancer support groups. Cancer Pract, 7: 122, 1999 15. Lubeck, D. P., Kim, H., Grossfeld, G., Ray, P., Penson, D. F., Flanders, S. C. et al: Health related quality of life differences between black and white men with prostate cancer: data from the Cancer of the Prostate Strategic Urologic Research Endeavor. J Urol, 166: 2281, 2001
APPENDIX
1. Overall, how satisfied are you with the treatment you received for your prostate cancer? Extremely dissatisfied 1 Dissatisfied 2 Neither satisfied nor dissatisfied 3 Satisfied 4 Extremely satisfied 5 No treatment yet 6 2. Overall, during the LAST 4 WEEKS, how satisfied have you been with the relief of your prostate cancer symptoms? Very satisfied 1 Satisfied 2 Neither satisfied nor dissatisfied 3 Dissatisfied 4 Very dissatisfied 5 Not applicable 6 3. How bothered have you been with the side effects from your prostate cancer treatment? I have no side effects 1 Not at all bothered 2 Slightly bothered 3 Moderately bothered 4 Very bothered 5 Extremely bothered 6 No treatment yet 7
Vol. 168, 2092–2096, November 2002 Printed in U.S.A.
DOI: 10.1097/01.ju.0000033591.64733.ef
SOCIODEMOGRAPHIC CHARACTERISTICS AND HEALTH RELATED QUALITY OF LIFE IN MEN ATTENDING PROSTATE CANCER SUPPORT GROUPS DANA KATZ, THERESA M. KOPPIE, DAVID WU, MAXWELL V. MENG, GARY D. GROSSFELD,* NATALIA SADESKY, DEBORAH P. LUBECK* AND PETER R. CARROLL† From the Urology Outcomes Research Group, Department of Urology and Mt. Zion Comprehensive Cancer Center, University of California, San Francisco, San Francisco, California
ABSTRACT
Purpose: Prostate cancer can be associated with anxiety, depression and fears of recurrence and side effects of treatment. Support groups may help meet the needs of patients with cancer by providing treatment information and emotional support. We describe men in prostate cancer support groups and compare them to a national registry. Materials and Methods: Men attending prostate cancer support groups in the San Francisco Bay area completed a questionnaire including sociodemographic and clinical characteristics, health related quality of life items, satisfaction with treatment, relief of prostate cancer symptoms and bother from perceived side effects of treatment. Patients in support groups were compared to men enrolled in a national prostate cancer registry (Cancer of the Prostate Strategic Urological Research Endeavor). Results: Men attending support groups had higher annual income and education levels, lower median serum prostate specific antigen and higher cancer grades than men in Cancer of the Prostate Strategic Urological Research Endeavor. Clinical stage was comparable for the 2 groups. Men in support groups were satisfied with treatment and alleviation from symptoms. Adjusting for ethnicity, marital status, age and type of treatment, sexual function scores were higher in men who attended support groups (p ⫽ 0.001). There was no statistically significant difference in bowel and urinary function between groups, although urinary function approached statistical significance at p ⫽ 0.05. Sexual and bowel bother scores indicated less bother for men in support groups (p ⱕ0.025). Conclusions: Men enrolled in support groups have unique sociodemographic characteristics. Their health related quality of life appears to be better than that of other men with prostate cancer. Whether this is related to support group participation is not known. Additional studies are required to determine whether routine support group participation improves outcomes in men with prostate cancer. KEY WORDS: prostatic neoplasms; self-help groups; quality of life
Diagnosis and treatment of cancer may be associated with anxiety, depression and fears about treatment related side effects and cancer progression. Although such psychosocial morbidity is highly prevalent in men with prostate cancer, many of them believe their physicians do not meet their educational and emotional needs.1, 2 Support groups can help address the psychosocial issues and concerns of patients with cancer by providing a forum where they have access to treatment information as well as emotional support. Moreover, some speculate that support group participation may prolong overall survival of patients with cancer. Spiegel et al randomized women with metastatic breast cancer to standard medical treatment plus support group therapy or standard medical treatment alone.3 All patients receiving medical treatment alone died within 4 years. Of the patients who received support group interaction
with standard treatment 40% were alive at 5 years and 8% were alive at 10 years. Despite data suggesting emotional and clinical benefits of support group participation, men with prostate cancer participate in support groups infrequently. Krizek et al interviewed men with prostate cancer and women with breast cancer.4 Men were significantly less likely to participate in support groups (13%) compared to women (33%). Such variations may be explained by gender differences in coping techniques. Whereas women tend to mobilize resources such as friends and family for emotional support when coping with cancer, men are less likely to seek help or express feelings to other men.5 Benefits of support group participation by men with prostate cancer have not been thoroughly studied, and no reports to date have directly evaluated the impact of prostate cancer support group participation on health related quality of life. We describe the sociodemographic and clinical characteristics of men with prostate cancer who participated in support groups in the San Francisco Bay area and compared them to patients with prostate cancer enrolled in a national disease registry. We also evaluated the impact of support group participation on various health related quality of life domains using validated instruments.
Accepted for publication May 24, 2002. Supported by the McBean Family Foundation and the University of California, San Francisco Prostate Cancer Specialized Program of Research Excellence, National Institutes of Health/National Cancer Institute Grant 1 P50 C89520 to the University of California, San Francisco/Mt. Zion Comprehensive Cancer Center. * Financial interest and/or other relationship with TAP Pharmaceuticals. † Financial interest and/or other relationship with TAP Pharmaceuticals, National Cancer Institute, SWOG, Ablation Technology and AstraZeneca. 2092
CHARACTERISTICS OF MEN ATTENDING PROSTATE CANCER SUPPORT GROUPS MATERIALS AND METHODS
Men with prostate cancer attending prostate cancer support groups in the San Francisco area between July 2000 and February 2001 were enrolled in the study. A network of 10 active support groups contributed patients. Support group leaders and participants were informed in writing regarding the nature and goals of the project. Prior approval of the study protocol was obtained from the Committee on Human Research and Institutional Review Board. Patients were recruited during a regular support group meeting if they met the criteria of age older than 18 years, biopsy proven prostate cancer and attendance in at least 1 support group session. Upon enrollment patients completed a baseline questionnaire that included sociodemographic characteristics, clinical characteristics and health related quality of life domains. Additional questions evaluated patient satisfaction, relief of prostate cancer symptoms and bother from perceived side effects of prostate cancer treatment (see Appendix). Health related quality of life was evaluated using the RAND SF-36 Health Survey-1 (SF-36)6 and the University of California, Los Angeles (UCLA) Prostate Cancer Index (PCI).7, 8 The SF-36 is comprised of 8 scales that assess general physical function, physical role function, bodily pain, general health, vitality/fatigue, social function, emotional role function, mental health and comparative health. The UCLA PCI is comprised of 6 scales that assess urinary function and bother, bowel function and bother, and sexual function and bother. All scales are scored from 0 to 100, where 0 represents the worst functioning and 100 represents the best functioning. Patients in support groups were compared to men with prostate cancer who were enrolled in a national disease registry (Cancer of the Prostate Strategic Research Endeavor, CaPSURE.9, 10 CaPSURE is a longitudinal, observational data base of patients with prostate cancer recruited through a network of urologists at 35 community and academic urology practice sites distributed regionally throughout the United States. At each practice site patients with biopsy proven prostate cancer are invited to join the study in a consecutive fashion as they present for outpatient care. At
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the time of enrollment extensive clinical and demographic information is recorded based on the existing medical record, including type of primary treatment received, patient age, cancer stage, tumor grade and serum prostate specific antigen (PSA) at diagnosis. Initial treatment is defined on the basis of clinical data reported by the physician within 6 months of diagnosis. Initial treatment is categorized as radical prostatectomy, radiation therapy, brachytherapy, hormonal therapy, including medical and surgical, cryosurgery or surveillance. Additional data are recorded prospectively at the time of each office visit subsequent to the baseline visit, including new procedures, treatments and diagnostic tests. Health related quality of life is measured upon enrollment and every 6 months using the SF-36 and the UCLA PCI. Unfortunately, comparable information on patient satisfaction with treatment is not available from CaPSURE. Patients are followed in the data base until death or withdrawal from the study. Institutional review board approval for the study is obtained for each clinic site and patient informed consent for participation is required for data collection. Additional details of the project methodology have been published elsewhere.9 Although CaPSURE does not record support group participation, it was anticipated that such participation was infrequent given prior studies of men with prostate cancer.4 At the time of the study 6,969 patients were enrolled in CaPSURE. A total of 1,966 men with a minimum of 1 year of followup who completed a health related quality of life questionnaire at the time of last followup and who did not chose surveillance as treatment for prostate cancer were selected for analysis. The minimum of 1 year of followup was included as a criterion since men in support groups had been previously diagnosed and treated with a similar interval since treatment. Patients treated with surveillance in CaPSURE were excluded from study since there were no individuals selecting watchful waiting only as treatment in the support groups. Clinical and demographic characteristics of patients in support groups were compared to those from the CaPSURE data base. Clinical data included TNM stage (with T1 and T2 combined into 1 category and patients with T4
TABLE 1. Demographic and clinical characteristics of men in support groups and CaPSURE Characteristic No. pts. No. age (%): 50–60 yrs. 60–70 yrs. Greater than 70 yrs. No. ethnicity (%): White Nonwhite No. relationship (%): Live with spouse or partner Not in relationship/widowed No. household income (%): Less than $20,000 $20,001–$50,000 More than $50,001 No. education level (%): Some high school or less High school/technical school graduate Some college College graduate Graduate or professional school No. stage (%): T1/T2 T3 No. Gleason score (%): 2–6 7 8 Median PSA at diagnosis Median mos. since diagnosis
Support Groups 96
CaPSURE 1,966
p Value 0.053
15 (15.6) 36 (37.5) 45 (46.9)
188 589 955
(10.8) (32.2) (55.2)
90 (91.8) 8 (8.2)
1,599 154
(91.22) (8.78)
83 (84.7) 15 (15.3)
1,429 324
(81.5) (18.5)
12 (14) 38 (44.2) 36 (41.8)
708 720 274
(41.6) (42.3) (16.1)
0 (0.0) 7 (7.5) 20 (21.5) 32 (34.4) 34 (36.6)
281 440 337 309 288
(16.9) (26.6) (20.4) (18.7) (17.4)
82 (91.1) 8 (8.9)
1,579 152
(91.2) (8.8)
46 (51.1) 31 (34.4) 13 (14.4) 8.3 42.4
1,083 (71.4) 261 (17.2) 173 (11.4) 9.13 43.9
0.447 0.428 ⬍0.0001
⬍0.0001
0.576 ⬍0.0001
⬍0.0001 ⬍0.0001
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CHARACTERISTICS OF MEN ATTENDING PROSTATE CANCER SUPPORT GROUPS
TABLE 2. Types of prostate cancer treatments for men in support groups and CaPSURE Treatment
No. All Treatments for Support Group Pts. (%)
No. All Treatments for CaPSURE Pts. (%)
98 55 (56.1) 130 (13.3) 41 (41.8) 1 (1.0) 44 (44.9) 24 (24.5) 68 (69.4)
1,996 579 (29.1) 84 (4.2) 922 (44.3) 149 (7.5) 865 (43.3) 163 (3.0) 706 (35.9)
Total Radiotherapy Brachytherapy Radical prostatectomy Cryotherapy Hormonal therapy Other More than 1 treatment
excluded from analysis), Gleason score, PSA at diagnosis and time since diagnosis. All statistical analyses were conducted using SAS software (version 8.2, SAS Institute, Cary, North Carolina). The chisquare test was calculated to assess differences for categorical variables such as age, ethnicity, relationship, household income and education level. A multivariate regression model was specified to evaluate differences between health related quality of life scores for support group participants and CaPSURE participants. This model adjusted for age at diagnosis, marital status, ethnicity and treatment. RESULTS
Sociodemographic characteristics of patient groups are summarized in table 1. There were no differences in age or ethnicity between support group and CaPSURE participants. Men in support groups were more likely to have higher annual income (p ⬍0.0001) and educational level (p ⬍0.0001) than those in CaPSURE. Patients from both groups were equally likely to report being involved in a significant relationship. Men in support groups attended meetings frequently with 80% attending meetings on a monthly or weekly basis. Table 1 also summarizes clinical characteristics of these 2 patient populations. Median PSA at diagnosis of men in support groups was lower than that of CaPSURE patients (8.3 and 9.1 ng./ml., respectively, p ⫽ 0.032). However, support group participants had significantly higher Gleason scores than men in CaPSURE (p ⬍0.0001). Neither clinical stage nor time from diagnosis differed between the 2 groups. Information on treatment is reported in table 2. Of 98 support group patients 68 (69.4%) reported receiving 2 or more treatments for a total of 178 treatments reported. Of the support groups 56% received radiotherapy, and 42% underwent radical prostatectomy as part of overall treatment, TABLE 3. Satisfaction with treatment, side effects, relief of symptoms and frequency of visits for men in support groups Characteristic (No. pts.) Satisfaction with treatment (101): Extremely satisfied Satisfied Dissatisfied Neither satisfied nor dissatisfied No treatment yet Side effects of treatment (106): No side effects Not at all bothered Slightly bothered Moderately bothered Very bothered Extremely bothered No treatment yet Relief of symptoms (105): Very satisfied Satisfied Neither satisfied nor dissatisfied Dissatisfied Not applicable
No. Frequency (%) 33 (32.7) 44 (43.6) 5 (5.0) 11 (10.9) 8 (7.9) 11 (10.4) 5 (4.7) 31 (29.3) 33 (31.1) 11 (10.4) 3 (2.8) 12 (11.3) 28 (26.7) 36 (34.3) 15 (14.3) 1 (0.95) 25 (23.8)
TABLE 4. SF-36 scores of men in support groups and CaPSURE Support Groups
SF-36
Physical functioning: No. Mean Range Physical role: No. Mean Range Emotional role: No. Mean Range Vitality/fatigue: No. Mean Range Social functioning: No. Mean Range Bodily pain: No. Mean Range Mental health: No. Mean Range General health: No. Mean Range Health compared to 1 yr.: No. Mean Range * Adjusted for ethnicity, relation,
CaPSURE
p Value Adjusted* 0.0017
88 88.2 0–100
2,235 76.5 0–100
90 83.6 0–100
2,209 66.3 0–100
90 85.9 0–100
2,211 77.9 0–100
84 70.8 0–100
2,235 61.7 0–100
88 90.3 25–100
2,236 84.4 0–100
88 90.2 37–100
2,237 83.1 0–100
84 81.7 32–100
2,236 77.7 0–100
88 77.6 8.3–100
2,249 67.0 0–100
0.0015
0.06
0.0001
0.09
0.0028
0.04
0.0007
0.39 88 54.8 0–100 age and type
2,248 55.9 0–100 of treatment.
TABLE 5. UCLA PCI scores for men in support groups and CaPSURE UCLA PCI Scales Urinary function: No. Mean Range Bowel function: No. Mean Range Sexual function: No. Mean Range Urinary bother: No. Mean Range Bowel bother: No. Mean Range Sexual bother: No. Mean Range * Adjusted for ethnicity,
Support Groups
CaPSURE
p Value Adjusted* 0.052
93 82.2 0–100
2,261 78.6 0–100
94 86.2 39.25–100
2,237 84.2 6.25–100
94 31.7 0–90.625
2,208 21.3 0–100
92 78.8 0–100
2,230 73.4 0–100
92 86.7 25–100
2,221 81.4 0–100
0.46
0.001
0.051
0.025
⬍0.0001
92 2,069 57.6 42.5 0–100 0–100 relation, age and type of treatment.
and 45% received hormonal therapy. In contrast, only 35.9% of CaPSURE patients received more than 1 treatment. CaPSURE patients were less likely to receive radiotherapy. Neither group reported receiving chemotherapy. A total of 13% of men in support groups and 4.2% in CaPSURE reported brachytherapy as a treatment. Table 3 presents information on satisfaction with treatment and relief from prostate cancer symptoms for men who attended support groups. Patients in support groups were generally satisfied with treatment (76.3%). Perceived bother from prostate
CHARACTERISTICS OF MEN ATTENDING PROSTATE CANCER SUPPORT GROUPS
cancer treatment side effects was low in this group as well. Of the 94 patients who received treatment 47 (50%) reported either no bother or slight bother from side effects of prostate cancer treatment. Most men in support groups were satisfied with prostate cancer symptom relief (61%). Health related quality of life scores of patients in support groups and CaPSURE patients are compared in tables 4 and 5. These scores were adjusted for ethnicity, marital status, age at diagnosis and treatment. Since the men were free not to answer questions, sample sizes vary from 1 scale to another. Men in support groups had higher physical function role, vitality/fatigue, mental health, general health and health compared to 1 year ago on the SF-36 than men enrolled in CaPSURE (table 4). With the exception of health compared to 1 year ago, these differences were statistically significant. For the UCLA PCI men in support groups had significantly higher sexual function scores (p ⫽ 0.0009) as well as sexual bother scores (p ⫽ 0.0006), indicating better function and less bother (table 5). Urinary and bowel function scores were also somewhat higher for men who participated in support groups, although these differences were not statistically significant. However, men in support groups had significantly higher urinary and bowel bother scores, indicating less urinary and bowel bother, compared to men enrolled in CaPSURE (p ⫽ 0.04 and 0.02, respectively).
DISCUSSION
Psychosocial adaptation is generally poor among men diagnosed with any type of cancer.11 Despite a positive association between emotional support and adaptation to the diagnosis of cancer,12 men continue to be less likely than women to provide, receive and seek social support.13 A possible mechanism by which such support can be gained is through participation in a prostate cancer support group. However, few studies to date have addressed the benefits, if any, of support group participation by men with prostate cancer and how those who participate in support groups differ from those who do not. Therefore, we evaluated the sociodemographic characteristics, clinical characteristics and health related quality of life of men with prostate cancer who participate in support groups in the San Francisco area and compared them to men enrolled in CaPSURE. Although CaPSURE does not specifically record support group participation, it was anticipated that such participation would be infrequent given prior studies in this patient population.4 We found that support group participants had greater financial resources and higher levels of education compared to patients enrolled in CaPSURE. Of patients in a support group 42% earned greater than $50,000 per year and 71% reported having a college degree or higher. Of those enrolled in CaPSURE only 16.6% reported an annual income greater than $50,000 and 36.2% reported having achieved a college degree or higher. Crawford et al administered telephone surveys to 1,000 men with prostate cancer from the US TOO support group membership list.2 These patients either attended support group meetings or expressed interest in support group participation. Men in US TOO were generally well educated with 41% having a college degree or higher, and approximately 33% of the patients surveyed had an annual income of $50,000 or more. Coreil and Behal surveyed 405 men recruited from 38 Man-to-Man support groups in Florida, and 21% of the surveyed population had an income greater than $50,000 and 40% had received a college degree or higher.14 Although our figures regarding income and education were higher than those reported by Crawford et al, and Coreil and Behal, such differences can be attributed to regional as well as temporal variation. These data suggest that men with higher education levels and income may have more access to health related services and, therefore, may be
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more likely to take an active role in the health care process, including support group participation. We also found that men who attend support groups do so frequently, with 87% attending group meetings on a weekly to monthly basis. Coreil and Behal found that about a quarter of patients in support groups surveyed took a leadership role within the group,14 which suggests that men who actively participate in support groups may be invested in the group. An important finding in our study was that men in support groups had more favorable general and disease specific health related quality of life scores compared to those in CaPSURE, despite the observation that men in support groups were undergoing more treatment. Better general health related quality of life may reflect the improved outlook and alleviation of anxiety provided by support group participation, or it may be due to the higher sociodemographic profile of men in support groups. We also found that men in support groups had higher sexual function than those in CaPSURE. The 2 groups did not demonstrate statistically significant differences with respect to urinary and bowel function. Such findings may be due to either the psychological benefits of support group participation, disease and treatment related differences, or improved access to treatment for erectile dysfunction or erectile aids. However, it is interesting to note that bother scores for support group participants in sexual, urinary and bowel categories were significantly higher than bother scores in the nonsupport group population, indicating less bother. This finding suggests that participation in support groups may alleviate anxiety and level of concern with respect to sexual, urinary and bowel function. Our study is one of few to show that support group participants may not be representative of the entire population of patients with prostate cancer. To our knowledge it is the only study to show that support group participants appear to enjoy a better health related quality of life compared to those who do not participate in support groups. The reasons for these findings are unclear and, although they could relate to support group participation, they may be related to the unique sociodemographic profile of men in support groups. If, however, health related quality of life outcomes or satisfaction with treatment could be improved with support group participation, such intervention could easily be implemented given the number of support groups in communities throughout the United States. Certain populations, such as black men with prostate cancer, may benefit from such intervention given that the health related quality of life appears to be worse than that of white men with prostate cancer.15 Such men are not well represented in support groups currently. It must be recognized that this study has limitations. A retrospective, cross-sectional study has inherent biases. We cannot show a causative relationship between support group participation and health related quality of life, although we can show an association. In the absence of a randomized controlled trial, the true relationship between support group participation and disease or health related quality of life outcomes cannot be determined. We are currently collecting prospective data from the support group population as part of an ongoing project to explore the effects of support group participation on long-term clinical and health related quality of life outcomes in men with prostate cancer. A randomized trial of psychosocial support is also under way. In studies such as ours there may be a volunteer bias as the type of patient who enrolls in such a study may have a more favorable health related quality of life. In addition, we sampled men from support groups in the San Francisco Bay area who may not be representative of all men with prostate cancer who participate in support groups nationally.
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CHARACTERISTICS OF MEN ATTENDING PROSTATE CANCER SUPPORT GROUPS CONCLUSIONS
REFERENCES
Men in support groups have higher income and educational levels than men who are not in support groups. Support group patients generally had higher general and disease specific health related quality of life scores than nonsupport group patients. Although there was no significant difference in bowel and urinary function between the 2 groups, sexual function scores were higher for men who attended support groups. In addition, sexual, urinary and bowel bother scores were higher for support group patients, indicating less bother. Thus, further studies should be performed to evaluate whether support group participation provides any survival or health related quality of life benefit for men with prostate cancer as well as for other cancers.3
1. Cliff, A. M. and MacDonagh, R. P.: Psychosocial morbidity in prostate cancer: II. A comparison of patients and partners. BJU Int, 86: 834, 2000 2. Crawford, E. D., Bennett, C. L., Stone, N. N., Knight, S. J., DeAntoni, E., Sharp, L. et al: Comparison of perspectives on prostate cancer: analyses of survey data. Urology, 50: 366, 1997 3. Spiegel, D., Bloom, J. R., Kraemer, H. C. and Gottheil, E.: Effect of psychosocial treatment on survival of patients with metastatic breast cancer. Lancet, 2: 888, 1989 4. Krizek, C., Roberts, C., Ragan, R., Ferrara, J. J. and Lord, B.: Gender and cancer support group participation. Cancer Pract, 7: 86, 1999 5. Volkers, N.: In coping with cancer, gender matters. J Natl Cancer Inst, 91: 1712, 1999 6. Stewart, A. L., Greenfield, S., Hays, R. D., Wells, K., Rogers, W. H., Berry, S. D. et al: Functional status and well-being of patients with chronic conditions. Results from the Medical Outcomes Study. JAMA, 262: 907, 1989 7. Litwin, M. S., Hays, R. D., Fink, A., Ganz, P. A., Leake, B., Leach, G. E. et al: Quality-of-life outcomes in men treated for localized prostate cancer. JAMA, 273: 129, 1995 8. Litwin, M. S., Hays, R. D., Fink, A., Ganz, P. A., Leake, B. and Brook, R. H.: The UCLA Prostate Cancer Index: development, reliability, and validity of a health-related quality of life measure. Med Care, 36: 1002, 1998 9. Lubeck, D. P., Litwin, M. S., Henning, J. M., Stier, D. M., Mazonson, P., Fisk, R. et al: The CaPSURE database: a methodology for clinical practice and research in prostate cancer. CaPSURE Research Panel Cancer of the Prostate Strategic Urologic Research Endeavor. Urology, 48: 773, 1996 10. Lubeck, D. P., Litwin, M. S., Henning, J. M. and Carroll, P. R.: Measurement of health-related quality of life in men with prostate cancer: the CaPSURE database. Qual Life Res, 6: 385, 1997 11. Fife, B. L., Kennedy, V. N. and Robinson, L.: Gender and adjustment to cancer: clinical implications. J Psychosoc Oncol, 12: 1, 1994 12. Helgeson, V. S. and Cohen, S.: Social support and adjustment to cancer: reconciling descriptive, correlational, and intervention research. Health Psychol, 15: 135, 1996 13. Ashton, W. A. and Fuehrer, A.: Effects of gender and gender role identification of participant and type of social support resource on support seeking. Sex Roles, 28: 461, 1993 14. Coreil, J. and Behal, R.: Man to man prostate cancer support groups. Cancer Pract, 7: 122, 1999 15. Lubeck, D. P., Kim, H., Grossfeld, G., Ray, P., Penson, D. F., Flanders, S. C. et al: Health related quality of life differences between black and white men with prostate cancer: data from the Cancer of the Prostate Strategic Urologic Research Endeavor. J Urol, 166: 2281, 2001
APPENDIX
1. Overall, how satisfied are you with the treatment you received for your prostate cancer? Extremely dissatisfied 1 Dissatisfied 2 Neither satisfied nor dissatisfied 3 Satisfied 4 Extremely satisfied 5 No treatment yet 6 2. Overall, during the LAST 4 WEEKS, how satisfied have you been with the relief of your prostate cancer symptoms? Very satisfied 1 Satisfied 2 Neither satisfied nor dissatisfied 3 Dissatisfied 4 Very dissatisfied 5 Not applicable 6 3. How bothered have you been with the side effects from your prostate cancer treatment? I have no side effects 1 Not at all bothered 2 Slightly bothered 3 Moderately bothered 4 Very bothered 5 Extremely bothered 6 No treatment yet 7