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10 - Short-term outcomes of chemoprevention, genetic susceptibility testing, and screening interventions: What are they? How are they measured? When should they be measured?

Published online by Cambridge University Press:  18 December 2009

Jeanne S. Mandelblatt M.D., M.P.H.
Affiliation:
Director Georgetown University, Washington, DC
Joe V. Selby M.D., M.P.H.
Affiliation:
Director Kaiser-Permanente Medical Care Program, Oakland, CA
Joseph Lipscomb
Affiliation:
National Cancer Institute, Bethesda, Maryland
Carolyn C. Gotay
Affiliation:
Cancer Research Center, Hawaii
Claire Snyder
Affiliation:
National Cancer Institute, Bethesda, Maryland
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Summary

Introduction

Cancer is a frequent and serious illness with major impact on the quantity and quality of life. For several common cancers, preventive measures and periodic screening can reduce the risk for cancer incidence or, through early detection, lower morbidity and mortality from incident cancers. More recently, genetic testing has been introduced to screen for cancer susceptibility mutations. Presumably, the benefits of screening and early detection are accompanied by net improvements in the quality of life for persons in whom cancers are prevented or detected early. However, both prevention efforts and screening also have the potential to influence quality of life more subtly, either positively or negatively, for the large majority of asymptomatic individuals who would never have developed the cancer.

Faced with an increasing number of effective prevention and screening strategies and technologies, individual patients, health care systems, and policy analysts need accurate assessments of quality-of-life outcomes to inform shared decision making and to conduct relevant decision and cost-effectiveness analyses.– However, there has been little research on short-term effects on quality of life, which may be the predominant effects of chemopreventive or screening interventions.

In this chapter, short-term outcomes are defined, a framework for understanding and measuring these outcomes presented, the quality-of-life domains most relevant to cancer prevention and screening activities explored, the existing literature and tools currently employed to measure outcomes reviewed, methodological challenges highlighted, and recommendations for future studies made.

Type
Chapter
Information
Outcomes Assessment in Cancer
Measures, Methods and Applications
, pp. 216 - 240
Publisher: Cambridge University Press
Print publication year: 2004

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References

Strain, J. J. (1990). The evolution of quality of life evaluations in cancer therapyOncology 4:22–7Google ScholarPubMed
Heithoff, K. A. (1990). Effectiveness and Outcomes in Health Care: Proceedings of an Invitational Conference by the Institute of Medicine, Division of Health Care Services. Washington, DC: National Academy Press
Holland, J. C. (1986). Assessment of Quality of Life and Cancer Treatment. Brookline, MA: Cancer and Leukemia Group B (CALGB)
Mandelblatt, J., Armetta, C., Yabroff, Y.et al. (2004). A descriptive review of the literature on breast cancer outcomes:1990–2000Journal of the National Cancer Institute, in pressGoogle Scholar
Patrick, D. L., Erickson, P. (1993). Health Status and Health Policy: Quality of Life in Health Care Evaluation and Resource Allocation. New York, NY: Oxford University Press
Johnston, K., Brown, J., Gerard, K.et al. (1998). Valuing temporary and chronic health states associated with breast screeningSocial Science and Medicine 47(2):213–22CrossRefGoogle ScholarPubMed
Dickersin, K. (1994). Identifying relevant studies for systematic reviewsBritish Medical Journal 309:1286–91CrossRefGoogle ScholarPubMed
Greenwald, P. (2001). From carcinogenesis to clinical interventions for cancer preventionToxicology 166:37–45CrossRefGoogle ScholarPubMed
Osborne, M., Boyle, P., Lipkin, M. (1997). Cancer preventionLancet 2(Suppl.):27–30CrossRefGoogle Scholar
Moinpour, C., Lovato, L., Thompson, I., Ware, J.et al. (2000). Profile of men randomized to the prostate cancer prevention trial: baseline health-related quality of life, urinary and sexual functioning and health behaviorsJournal of Clinical Oncology 18(1942):1953CrossRefGoogle ScholarPubMed
Fallowfield, L., Fleissig, A., Edwards, R.et al. (2001). Tamoxifen for the prevention of breast cancer: psychosocial impact on women participating in two randomized controlled trialsJournal of Clinical Oncology 19(7):1885–92CrossRefGoogle ScholarPubMed
Ganz, P. A., Day, R., Ware, J. E.et al. (1995). Base-line quality-of-life assessment in the National Surgical Adjuvant Breast and Bowel Project Breast Cancer Prevention TrialJournal of the National Cancer Institute 87(18):1372–82CrossRefGoogle ScholarPubMed
Stewart, A. L., Ware, J. E. (eds) (1992). Measuring Functioning and Well-Being: The Medical Outcomes Study Approach. Durham, NC: Duke University Press
Goldberg, D. P., Hillier, V. F. (1979) A scaled version of the General Health QuestionnairePsychology Medicine 9(1):139–45CrossRefGoogle ScholarPubMed
Spielberger, C. D. (1983). Manual for the State-Trait Anxiety Inventory STAI(form Y) “Self evaluation questionnaire.” Palo Alto, CA: Consulting Psychologists Press
Wallston, K. A. (1978). Development of the Multidimensional Health Locus of Control (MHLC) ScalesHealth Education Monograph 6(2):160–70CrossRefGoogle ScholarPubMed
Andresen, E. M., Malmgren, J. A., Carter, W. B.et al.Screening of depression in well older adults: evaluation of a short form of the CES-D (Center for Epidemiologic Studies Depression Scale)American Journal of Preventive Medicine 10:77–84CrossRef
Barry, M. J. (1995). Measuring disease-specific health status in men with benign prostatic hyperplasia. Measurement Committee of the American Urological AssociationMedical Care 33(4(Suppl.)):AS145–55Google ScholarPubMed
Barry, M. J., Fowler, F. J., O'Leary, M. P.et al. (1992). The American Urological Association symptom index for benign prostatic hyperplasia. The Measurement Committee of the American Urological AssociationJournal of Urology 148(5):1549–57CrossRefGoogle Scholar
Sherbourne, C. D. (1992). Social functioning: sexual problems measures. In Measuring Functioning and Well-being: The Medical Outcomes Study Approach, eds. A. L. Stewart, J. E. Ware, Jr., pp. 194–204. Durham, NC: Duke University Press
Thirlaway, K. (1996). The Sexual Activity Questionnaire: a measure of women's sexual functioningQuality of Life Research 5(1):81–90CrossRefGoogle ScholarPubMed
Hunter, M. (1992). The Women's Health Questionnaire. A measure of mid-aged women's perceptions of their emotional and physical healthPsychology and Health 7:15–54CrossRefGoogle Scholar
Strickler, R. (2000). Raloxifene and estrogen effects on quality of life in healthy postmenopausal women: a placebo-controlled randomized trialObstetrics and Gynecology 96(3):359–65Google ScholarPubMed
Epstein, R. S., Deverka, P. A., Chute, C. G.et al. (1992). Validation of new quality of life questionnaire for benign prostatic hyperplasiaJournal of Clinical Epidemiology 45:1431–45CrossRefGoogle ScholarPubMed
Hudmon, K., Lover, R., Chamberlain, R. (1999). Perceived benefits and barriers to participation in a phase I/II colon cancer prevention trialJournal of Cancer Education 14:83–7Google Scholar
Day, R., Ganz, P. A., Costantino, J. P.et al. (1999). Health-related quality of life and tamoxifen in breast cancer prevention: a report from the National Surgical Adjuvant Breast and Bowel Project P-1 StudyJournal of Clinical Oncology 17(9):2659–69CrossRefGoogle ScholarPubMed
Thirlaway, K., Fallowfield, L., Cuzick, J. (1996). Anxiety in women “at risk” of developing breast cancerBritish Journal of Cancer 73:1422–4CrossRefGoogle Scholar
Cummings, S. R., Eckert, S., Krueger, K. A.et al. (1999). The effect of raloxifene on risk of breast cancer in postmenopausal women: results from the MORE randomized trial. Multiple Outcomes of Raloxifene EvaluationJournal of the American Medical Association 281(23):2189–97CrossRefGoogle ScholarPubMed
Fisher, B., Costantino, J. P., Wickerham, D. L.et al. (1998). Tamoxifen for prevention of breast cancer: report of the National Surgical Adjuvant Breast and Bowel Project P-1 StudyJournal of the National Cancer Institute 90(18):1371–88CrossRefGoogle ScholarPubMed
Ware, J. E., Sherbourne, C. D.Jr. (1992). The MOS 36-item short-form health survey (SF-36): Conceptual framework and item selectionMedical Care 30(6):473–81CrossRefGoogle ScholarPubMed
Roberts, R. E., Vernon, S. W. (1983). The center for epidemiologic studies depression scale: Its use in a community sampleAmerican Journal of Psychiatry 140(1):41–6Google Scholar
Radloff, L. S. (1977). The CES-D Scale: a self-report depression scale for research in the general populationApplied Psychological Measurement 1:385–401CrossRefGoogle Scholar
Dunn, B. K., Ford, L. G. (2001). From adjuvant therapy to breast cancer prevention: BCPT and STARBreast Journal 7(3):144–57CrossRefGoogle ScholarPubMed
Levine, M., Moutquin, J. M., Walton, R.et al. (2001). Chemoprevention of breast cancer. A joint guideline from the Canadian Task Force on Preventive Health Care and the Canadian Breast Cancer Initiative's Steering Committee on Clinical Practice Guidelines for the Care and Treatment of Breast CancerCanadian Medical Association Journal 164(12):1681–90Google Scholar
Fabian, C. J. (2001). Breast cancer chemoprevention: beyond tamoxifenBreast Cancer Research 3(2):99–103CrossRefGoogle ScholarPubMed
Thompson, I. M. J., Kouril, M., Klein, E. A.et al. (2001). The prostate cancer prevention trial: current status and lessons learnedUrology 57(4 (Suppl.)):230–4CrossRefGoogle ScholarPubMed
Kaplan, S., Garvin, D., Gilhooly, P.et al. (2000). Impact of baseline symptom severity on future risk of benign prostatic hyperplasia-related outcomes and long-term response to finasterideUrology 56(4):610–16CrossRefGoogle ScholarPubMed
Clark, L. C., Dalkin, B., Krongrad, A.et al. (1998). Decreased incidence of prostate cancer with selenium supplementation: results of a double-blind cancer prevention trialBritish Journal of Urology 81:730–4CrossRefGoogle ScholarPubMed
Clark, L. C., Combs, G. F., Turnbull, B. W.et al. (1996). Effects of selenium supplementation for cancer prevention in patients with carcinoma of the skin. A randomized controlled trial. Nutritional Prevention of Cancer Study GroupJournal of the American Medical Association 276:1957–63CrossRefGoogle ScholarPubMed
Kazis, L. E., Ren, X. S., Lee, A.et al. (1999). Health status in VA patients: results from the Veterans Health StudyAmerican Journal of Medical Quality 14(1):28–38CrossRefGoogle ScholarPubMed
Baron, J. A. (2000). Nonsteroidal anti-inflammatory drugs and cancer preventionAnnual Review of Medicine 51:511–23CrossRefGoogle ScholarPubMed
Kune, G. A. (1988). Colorectal cancer risk, chronic illnesses, operations, and medications: case control results from the Melbourne Colorectal Cancer StudyCancer Research 48(15):4399–404Google ScholarPubMed
Clapper, M. L. (2001). Chemoprevention of colorectal cancerCurrent Opinion in Oncology 13:307–13CrossRefGoogle ScholarPubMed
Baron, J. A. (1999). Calcium supplements for the prevention of colorectal adenomas. Calcium Polyp Prevention Study GroupAmerican College of Physicians Journal Club 131(2):39Google Scholar
Schiffman, M. H., Bauer, H. M., Hoover, R. N.et al. (1993). Epidemiologic evidence showing that human papillomavirus infection causes most cervical intraepithelial neoplasiaJournal of the National Cancer Institute 85:958–64CrossRefGoogle ScholarPubMed
Lerman, C., Hughes, C., Croyle, R. T.et al. (2000). Prophylactic surgery decisions and surveillance practices one year following BRCA1/2 testingPreventive Medicine 31(1):75–80CrossRefGoogle ScholarPubMed
Freyer, G., Dazord, A., Schlumberger, M.et al. (1999). Psychosocial impact of genetic testing in familial medullary-thyroid carcinoma: a multicentric pilot-evaluationAnnals of Oncology 10(1):87–95CrossRefGoogle ScholarPubMed
Smith, K. R., West, J. A., Croyle, R. T.et al. (1999). Familial context of genetic testing for cancer susceptibility: moderating effect of siblings' test results on psychological distress one to two weeks after BRCA1 mutation testingCancer Epidemiology, Biomarkers and Prevention 8(4 Pt 2):385–92Google ScholarPubMed
Evans, D. G., Blair, V., Greenhalgh, R.et al. (1994). The impact of genetic counselling on risk perception in women with a family history of breast cancerBritish Journal of Cancer 70(5):934–8CrossRefGoogle ScholarPubMed
Biesecker, B. B., Boehnke, M., Calzone, K.et al. (1993). Genetic counseling for families with inherited susceptibility to breast and ovarian cancerJournal of the American Medical Association 269(15):1970–4CrossRefGoogle ScholarPubMed
Billings, P. B. J. (1992). Genetic testing in the workplace: a view from the USATrends in Genetics 6:198–202CrossRefGoogle Scholar
Ritvo, P., Robinson, G., Irvine, J.et al. (2000). Psychological adjustment to familial genetic risk assessment: differences in two longitudinal samplesPatient Education and Counseling 40(2):163–72CrossRefGoogle ScholarPubMed
Tercyak, K. P., Lerman, C., Peshkin, B. N.et al. (2001). Effects of coping style and BRCA1 and BRCA2 test results on anxiety among women participating in genetic counseling and testing for breast and ovarian cancer riskHealth Psychology 20(3):217–22CrossRefGoogle ScholarPubMed
Hatcher, M. B., Fallowfield, L., A'Hern, R. (2001). The psychosocial impact of bilateral prophylactic mastectomy: prospective study using questionnaires and semistructured interviewsBritish Medical Journal 322(7278):76CrossRefGoogle ScholarPubMed
McNair, P. M., Lorr, M., Droppelman, L. (1971). EITSManual for the Profile of Mood States. San Diego, CA: Educational and Industrial Testing Service
Schwartz, M. D., Lerman, C., Miller, S. M.et al. (1995). Coping disposition, perceived risk, and psychological distress among women at increased risk for ovarian cancerHealth Psychology 14(3):232–5CrossRefGoogle ScholarPubMed
Diefenbach, M. A. (1993). Scales for assessing perceptions of health hazard susceptibilityHealth Education and Research 8(2):181–92CrossRefGoogle ScholarPubMed
Audrain, J., Rimer, B., Cella, D.et al. (1998). Genetic counseling and testing for breast-ovarian cancer susceptibility: what do women want?Journal of Clinical Oncology 16(1):133–8CrossRefGoogle ScholarPubMed
Schwartz, M. D., Peshkin, B. N., Hughes., C.et al. (2002). The impact of BRCA1/BRCA2 mutation testing on psychological distress in a clinic-based sampleJournal of Clinical Oncology 20(2):514–20CrossRefGoogle Scholar
Lerman, C., Narod, S., Schulman, K.et al. (1996). BRCA1 testing in families with hereditary breast-ovarian cancer. A prospective study of patient decision making and outcomesJournal of the American Medical Association 275(24):1885–92CrossRefGoogle Scholar
Lerman, C., Hughes, C., Lemon, S. J.et al. (1998). What you don't know can hurt you: adverse psychologic effects in members of BRCA1-linked and BRCA2-linked families who decline genetic testingJournal of Clinical Oncology 16(5):1650–4CrossRefGoogle ScholarPubMed
Zigmond, A. S., Snaith, R. P. (1983). The hospital anxiety and depression scaleActa Psychiatrica Scandanavica 67:361–70CrossRefGoogle ScholarPubMed
Lodder, L., Frets, P. G., Trijsburg, R. W.et al. (2001). Psychological impact of receiving a BRCA1/BRCA2 test resultAmerican Journal of Medical Genetics 98(1):15–243.0.CO;2-0>CrossRefGoogle ScholarPubMed
Zung, W. W., King, R. E. (1983). Identification and treatment of masked depression in a general medical practiceJournal of Clinical Psychiatry 44(10):365–8Google Scholar
Wagner, T. M., Moslinger, R., Langbauer, G.et al. (2000). Attitude towards prophylactic surgery and effects of genetic counselling in families with BRCA mutations. Austrian Hereditary Breast and Ovarian Cancer GroupBritish Journal of Cancer 82(7):1249–53CrossRefGoogle ScholarPubMed
Folkman, S. (1980). An analysis of coping in a middle-aged community sampleJournal of Health and Social Behavior 21(3):219–39CrossRefGoogle Scholar
Hopwood, P. (2001). A body image scale for use with cancer patientsEuropean Journal of Cancer 37(2):189–97CrossRefGoogle ScholarPubMed
Derogatis, L. R., Lipman, R. S., Rickels, K.et al. (1974). The Hopkins symptoms checklist (HSCL): a measure of primary symptom dimensionsPsychological Measurements in Psychopharmacology 7:79–110Google ScholarPubMed
Derogatis, L. R., Melisaratos, N. (1983). The Brief Sympton Inventory: an introductory reportPsychological Medicine 13(3):595–605CrossRefGoogle Scholar
Derogatis, L. R. (1977). SCL-90 Administration scoring and procedures. Manual-I to the (revised) version. Baltimore, MD: Johns Hopkins University School of Medicine
Dorval, M., Patenaude, A. F., Schneider, K. A.et al. (2000). Anticipated versus actual emotional reactions to disclosure of results of genetic tests for cancer susceptibility: findings from p53 and BRCA1 testing programsJournal of Clinical Oncology 18(10):2135–42CrossRefGoogle ScholarPubMed
Coyne, J. C., Benazon, N. R., Gaba, C. G.et al. (2000). Distress and psychiatric morbidity among women from high-risk breast and ovarian cancer familiesJournal of Consulting Clinical Psychiatry 68(5):864–74CrossRefGoogle ScholarPubMed
Miller, S. M. (1987). Monitoring and blunting: validation of a questionnaire to assess styles of information seeking under threatJournal of Personality and Social Psychology 52:345–53CrossRefGoogle ScholarPubMed
Scheier, M. F., Carver, C. S. (1985). Optimism, coping, and health: assessment and implications of generalized outcome expectanciesHealth Psychology 4(3):219–47CrossRefGoogle ScholarPubMed
Horowitz, M., Wilner, N., Alvarez, W. (1979). Impact of Event Scale: a measure of subjective stressPsychosomatic Medicine 41(3):209–18CrossRefGoogle ScholarPubMed
Grilli, R., Mainini, F., Penna, A.et al. (1993). Inappropriate Halsted mastectomy and patient volume in Italian hospitalsAmerican Journal of Public Health 83(12):1762–4CrossRefGoogle ScholarPubMed
Goldberg, D. P., Williams, P. (1988). A Users Guide to the General Health Questionnaire. Windsor: NFER-Nelson
Sherbourne, C. D., Stewart, A. L. (1991). The MOS Social Support SurveySocial Sciences and Medicine 32:705–15CrossRefGoogle ScholarPubMed
First, M. B., Spitzer, R. L., Gibbon, M. et al. (1995). Structured Clinical Interview for DSM—IV Axis I Disorders — Patient Edition (SCID-I-P, Version 2.0). New York: Biometrics Research Dept., New York State Psychiatric Institute
Plon, S. E., Peterson, L. E., Friedman, L. C.et al. (2000). Mammography behavior after receiving a negative BRCA1 mutation test result in the Ashkenazim: a community-based studyGenetics in Medicine 2(6):307–11CrossRefGoogle ScholarPubMed
Metcalfe, K. A., Liede, A., Hoodfar, E.et al. (2000). An evaluation of needs of female BRCA1 and BRCA2 carriers undergoing genetic counsellingJournal of Medical Genetics 37(11):866–74CrossRefGoogle ScholarPubMed
Frost, M. H., Schaid, D. J., Sellers, T. A.et al. (2000). Long-term satisfaction and psychological and social function following bilateral prophylactic mastectomyJournal of the American Medical Association 284(3):319–24CrossRefGoogle ScholarPubMed
Payne, D. K., Biggs, C., Tran, K. N.et al. (2000). Women's regrets after bilateral prophylactic mastectomyAnnals of Surgical Oncology 7(2):150–4CrossRefGoogle ScholarPubMed
Collins, V., Halliday, J., Warren, R.et al. (2000). Cancer worries, risk perceptions and associations with interest in DNA testing and clinic satisfaction in a familial colorectal cancer clinicClinical Genetics 58(6):460–8CrossRefGoogle Scholar
Croyle, R. T., Smith, K. R., Botkin, J. R.et al. (1997). Psychological responses to BRCA1 mutation testing: preliminary findingsHealth Psychology 16(1):63–72CrossRefGoogle ScholarPubMed
Lynch, H. T., Lynch, J., Conway, T.et al. (1994). Psychological aspects of monitoring high risk women for breast cancerCancer 74(3 Suppl.):1184–923.0.CO;2-4>CrossRefGoogle ScholarPubMed
Lynch, H. T., Watson, P., Tinley, S.et al. (1999). An update on DNA-based BRCA1/BRCA2 genetic counseling in hereditary breast cancerCancer Genetics and Cytogenetics 109(2):91–8CrossRefGoogle ScholarPubMed
Women's use of coping strategies while waiting for genetic testing results (2000). Poster session presented at the annual meeting of the American Society of Preventive Oncology. Bethesda, MD
Lerman, C., Schwartz, M. (1993). Adherence and psychological adjustment among women at high risk for breast cancerBreast Cancer Research and Treatment 28(2):145–55CrossRefGoogle ScholarPubMed
Kash, K. M., Holland, J. C., Halper, M. S.et al. (1992). Psychological distress and surveillance behaviors of women with a family history of breast cancerJournal of the National Cancer Institute 84(1):24–30CrossRefGoogle ScholarPubMed
Lerman, C., Caputo, C., Brody, D. (1990). Factors associated with inadequate cervical cancer screening among lower income primary care patientsJournal of the American Board of Family Practice 3(3):151–6Google ScholarPubMed
Lidbrink, E., Levi, L., Pettersson, I.et al. (1995). Single-view screening mammography: psychological, endocrine and immunological effects of recalling for a complete three-view examinationEuropean Journal of Cancer 31A(6):932–3CrossRefGoogle ScholarPubMed
Lazarus, R. S. (1974). Psychological stress and coping in adaptation and illnessInternational Journal of Psychiatry and Medicine 5(4):321–33CrossRefGoogle ScholarPubMed
Wardle, J., Pope, R. (1992). The psychological costs of screening for cancerJournal of Psychosomatic Research 36(7):609–24CrossRefGoogle ScholarPubMed
Olsson, P., Armelius, K., Nordahl, G.et al. (1999). Women with false positive screening mammograms: how do they cope?Journal of Medical Screening 6(2):89–93CrossRefGoogle ScholarPubMed
Skrabanek, P. (1985). False premises and false promises of breast cancer screeningLancet 2(8450):316–20CrossRefGoogle ScholarPubMed
Aro, A. R., Absetz, Pilvikki S., Elderen, T. M.et al. (2000). False-positive findings in mammography screening induces short-term distress — breast cancer-specific concern prevails longerEuropean Journal of Cancer 36(9):1089–97CrossRefGoogle ScholarPubMed
Aro, A. R., Absetz-Ylostalo, P., Eerola, T.et al. (1996). Pain and discomfort during mammographyEuropean Journal of Cancer 32A(10):1674–9CrossRefGoogle ScholarPubMed
Bennetts, A., Irwig, L., Oldenburg, B.et al. (1995). PEAPS-Q: A questionnaire to measure the psychosocial effects of having an abnormal pap smear. Psychosocial Effects of Abnormal Pap Smears QuestionnaireJournal of Clinical Epidemiology 48(10):1235–43CrossRefGoogle ScholarPubMed
Bennett, A. K. (1995). Overview of 1995 PIAA Breast Cancer StudyMissouri Medicine 92(10):624–6Google ScholarPubMed
Wolfe, C., Doherty, I., Raju, K. S.et al. (1992). First steps in the development of an information and counselling service for women with an abnormal smear resultEuropean Journal of Obstetrics, Gynecology and Reproductive Biology 45(3):201–6CrossRefGoogle ScholarPubMed
Tomaino-Brunner, C., Freda, M. C., Damus, K.et al. (1998). Can precolposcopy education increase knowledge and decrease anxiety?Journal of Obstetrics, Gynecology and Neonatal Nursing 27(6):636–45CrossRefGoogle ScholarPubMed
Nugent, L. S., Tamlyn-Leaman, K., Isa, N.et al. (1993). Anxiety and the colposcopy experienceClinical Nursing Research 2(3):267–77CrossRefGoogle ScholarPubMed
Gath, D. H., Hallam, N., Mynors-Wallis, L.et al. (1995). Emotional reactions in women attending a UK colposcopy clinicJournal of Epidemiology and Community Health 49(1):79–83CrossRefGoogle ScholarPubMed
Somerset, M. (1998). Intervening to reduce anxiety for women with mild dyskaryosis: do we know what works and why?Journal of Advanced Nursing 28(3):563–70CrossRefGoogle Scholar
Palmer, A. G., Tucker, S., Warren, R.et al. (1993). Understanding women's responses to treatment for cervical intra-epithelial neoplasiaBritish Journal of Clinical Psychology 32(Pt 1):101–12CrossRefGoogle ScholarPubMed
Marteau, T. M. (1990). Screening in practice: reducing the psychological costsBritish Medical Journal 301(6742):26–8CrossRefGoogle ScholarPubMed
Sutton, S., Saidi, G., Bickler, G.et al. (1995). Does routine screening for breast cancer raise anxiety? Results from a three wave prospective study in EnglandJournal of Epidemiology and Community Health 49(4):413–18CrossRefGoogle ScholarPubMed
Brett, J., Austoker, J., Ong, G. (1998). Do women who undergo further investigation for breast screening suffer adverse psychological consequences? A multi-centre follow-up study comparing different breast screening result groups five months after their last breast screening appointmentJournal of Public Health Medicine 20(4):396–403CrossRefGoogle ScholarPubMed
Ong, G., Austoker, J., Brett, J. (1997). Breast screening: adverse psychological consequences one month after placing women on early recall because of a diagnostic uncertainty. A multicentre studyJournal of Medical Screening 4(3):158–68CrossRefGoogle ScholarPubMed
Essink-Bot, M. L., Koning, H. J., Nijs, H. G.et al. (1998). Short-term effects of population-based screening for prostate cancer on health-related quality of lifeJournal of the National Cancer Institute 90(12):925–31CrossRefGoogle ScholarPubMed
Diefenbach, M. A. (1999). Specific worry about breast cancer predicts mammography use in women at risk for breast and ovarian cancerHealth Psychology 18(5):532–6CrossRefGoogle ScholarPubMed
Andrykowski, M. A., Curran, S. L., Studts, J. L.et al. (1996). Psychosocial adjustment and quality of life in women with breast cancer and benign breast problems: a controlled comparisonJournal of Clinical Epidemiology 49(8):827–34CrossRefGoogle ScholarPubMed
Lampic, C., Thurfjell, E., Bergh, J.et al. (2001). Short- and long-term anxiety and depression in women recalled after breast cancer screeningEuropean Journal of Cancer 37(4):463–9CrossRefGoogle Scholar
Bull, A., Mountney, L., Sanderson, H. (1991). Stage distribution of breast cancer: a basis for the evaluation of breast screening programmesBritish Journal of Radiology 64(762):516–19CrossRefGoogle ScholarPubMed
Scaf-Klomp, W., Sanderman, R., Wiel, H. B.et al. (1997). Distressed or relieved? Psychological side effects of breast cancer screening in The NetherlandsJournal of Epidemiology and Community Health 51(6):705–10CrossRefGoogle ScholarPubMed
Gilbert, F. J., Cordiner, C. M., Affleck, I. R.et al. (1998). Breast screening: the psychological sequelae of false-positive recall in women with and without a family history of breast cancerEuropean Journal of Cancer 34(13):2010–14CrossRefGoogle ScholarPubMed
Bell, S., Porter, M., Kitchener, H.et al. (1995). Psychological response to cervical screeningPreventive Medicine 24(6):610–16CrossRefGoogle ScholarPubMed
Thiis-Evensen, E., Wilhelmsen, I., Hoff, G. S.et al. (1999). The psychologic effect of attending a screening program for colorectal polypsScandinavian Journal of Gastroenterology 34(1):103–9CrossRefGoogle ScholarPubMed
Beck, A. T., Steer, R. A. (1993). Beck Depression Inventory Manual. San Antonio, TX: Harcourt Brace
Northouse, L. L., Jeffs, M., Cracchiolo-Caraway, A.et al. (1995). Emotional distress reported by women and husbands prior to a breast biopsyNursing Research 44(4):196–201CrossRefGoogle ScholarPubMed
Snaith, R. P. (1976). The Leeds scales for the self-assessment of anxiety and depressionBritish Journal of Psychiatry 128:156–65CrossRefGoogle ScholarPubMed
Steggles, S., Lightfoot, N., Sellick, S. M. (1998). Psychological distress associated with organized breast cancer screeningCancer Prevention and Control 2(5):213–20Google ScholarPubMed
Taylor, K. L., DiPlacido, J., Redd, W. H.et al. (1999). Demographics, family histories, and psychological characteristics of prostate carcinoma screening participantsCancer 85(6):1305–123.0.CO;2-I>CrossRefGoogle ScholarPubMed
Watson, D., Clark, L. A., Tellegen, A. (1988). Development and validation of brief measures of positive and negative affect: the PANAS scalesJournal of Personality and Social Psychiatry 54(6):1063–70CrossRefGoogle ScholarPubMed
Lauver, D. R., Kruse, K., Baggot, A. (1999). Women's uncertainties, coping, and moods regarding abnormal Papanicolaou resultsJournal of Womens Health and Gender-Based Medicine 8(8):1103–12CrossRefGoogle ScholarPubMed
Sjoberg, L. (1979). The measurement of moodScandinavian Journal of Psychology 20(1):1–18CrossRefGoogle ScholarPubMed
Taylor, J. A. (1953). A personality scale of manifest anxietyJournal of Abnormal Social Psychology 48:285–90CrossRefGoogle ScholarPubMed
Kerner, J. F., Yedidia, M., Padgett, D. et al. (2003). Realizing the promise of breast cancer screening: clinical follow-up after abnormal screening among black women. Preventive Medicine 37:92–101CrossRef
Billings, A. G. (1981). The role of coping responses and social resources in attenuating the stress of life eventsJournal of Behavioral Medicine 4(2):139–57CrossRefGoogle ScholarPubMed
Rosenberg, M. (1965). Society and the Adolescent Self Image. Princeton, NJ: Princeton University Press
Abi Rafi, A. (1965). The Maudsley Personality INVENTORY: a cross-cultural studyBritish Journal of Social and Clinical Psychology 4(4):266–8CrossRefGoogle ScholarPubMed
Cooper, P., Osborn, M., Gath, D. H. (1982). Evaluation of a modified self-report measure of social adjustmentBritish Journal of Psychiatry 141:68–75CrossRefGoogle ScholarPubMed
Miller, S. M., Roussi, P., Altman, D.et al. (1994). Effects of coping style on psychological reactions of low-income, minority women to colposcopyJournal of Reproductive Medicine 39(9):711–18Google ScholarPubMed
Deiner, E., Emmons, R., Larsen, R., Griffin, S. (1985). The satisfaction with life scaleJournal of Personality Assessment 49:71–5CrossRefGoogle Scholar
Smilkstein, G., Zimlich, R. (1990). A stress scale validation study. An instrument for psychosocial stressor assessment. New York, NY: Oxford University Press
Boer, H. Psychosocial effects of breast cancer screening. University of Twente 1993. Dissertation
Lau, R. R. Jr. (1981). Refinements in the measurement of health-specific locus-of-control beliefsMedical Care 19(11):1147–58CrossRefGoogle ScholarPubMed
Kellner, R. (1987). Psychological measurements in somatization and abnormal illness behaviorAdvances in Psychosomatic Medicine 17:101–18CrossRefGoogle ScholarPubMed
Walker, L. G., Cordiner, C., Gilbert, F. J. (1994). How distressing is attendance for routine breast screeningPsycho-Oncology 3:299–304CrossRefGoogle Scholar
Dean, C., Roberts, M. M., French, K.et al. (1986). Psychiatric morbidity after screening for breast cancerJournal of Epidemiology and Community Health 40(1):71–5CrossRefGoogle ScholarPubMed
Ellman, R., Angeli, N., Christians, A.et al. (1989). Psychiatric morbidity associated with screening for breast cancerBritish Journal of Cancer 60(5):781–4CrossRefGoogle ScholarPubMed
Cockburn, J., Luise, T., Hurley, S.et al. (1992). Development and validation of the PCQ: a questionnaire to measure the psychological consequences of screening mammographySocial Science and Medicine 34(10):1129–34CrossRefGoogle ScholarPubMed
Lowe, J. B., Balanda, K. P., Del Mar, C.et al. (1999). Psychologic distress in women with abnormal findings in mass mammography screeningCancer 85(5):1114–183.0.CO;2-Y>CrossRefGoogle ScholarPubMed
Spanier, G. B. (1976). Measuring dyadic adjustment: new scales for assessing the quality of marriage and similar dyadsJournal of Marriage and Family 38:15–28CrossRefGoogle Scholar
Eysenck, H. J., Eysenck, S. B. G. (1963). The Eysenck Personality Inventory. London: University of London Press
Mishel, M. H. (1981). The measurement of uncertainty in illnessNursing Research 30(5):258–63CrossRefGoogle ScholarPubMed
Veit, C. T., Ware, J. E. Jr. (1983). The structure of psychological distress and well-being in general populationsJournal of Consulting Clinical Psychology 51:730–42CrossRefGoogle ScholarPubMed
Lerman, C., Miller, S. M., Scarborough, R.et al. (1991). Adverse psychologic consequences of positive cytologic cervical screeningAmerican Journal of Obstetrics and Gynecology 165(3):658–62CrossRefGoogle ScholarPubMed
Stillman, M. J. (1977). Women's health beliefs about breast cancer and breast self-examinationNursing Research 26(2):121–7CrossRefGoogle ScholarPubMed
Fallowfield, L. J., Rodway, A., Baum, M. (1990). What are the psychological factors influencing attendance, non-attendance and re-attendance at a breast cancer screening centreJournal of the Royal Society of Medicine 83(9):547–551CrossRefGoogle Scholar
Slenker, S. E., Grant, M. C. (1989). Attitudes, beliefs, and knowledge about mammography among women over forty years of ageJournal of Cancer Education 4(1):61–5CrossRefGoogle ScholarPubMed
Naughton, C. K. (2001). Impact of transrectal ultrasound guided prostate biopsy on quality of life: a prospective randomized trial comparing 6 versus 12 coresJournal of Urology 165(1):100–3CrossRefGoogle ScholarPubMed
EuroQOL Group. (1990). EuroQol — a new facility for the measurement of health related quality of lifeHealth Policy 16:199–208CrossRef
Volk, R. J., Cantor, S. B., Spann, S. J.et al. (1997). Preferences of husbands and wives for prostate cancer screeningArchives of Family Medicine 6(1):72–6CrossRefGoogle ScholarPubMed
Torrance, G. W. (1987). Utility approach to measuring health-related quality of lifeJournal of Chronic Disease 40:593–600CrossRefGoogle ScholarPubMed
Gram, I. T., Lund, E., Slenker, S. E. (1990). Quality of life following a false positive mammogramBritish Journal of Cancer 62(6):1018–22CrossRefGoogle ScholarPubMed
Dominitz, J. A., Provenzale, D. (1997). Patient preferences and quality of life associated with colorectal cancer screeningAmerican Journal of Gastroenterology 92(12):2171–8Google ScholarPubMed
Haes, J. C., Koning, H. J., Oortmarssen, G. J.et al. (1991). The impact of a breast cancer screening programme on quality-adjusted life-yearsInternational Journal of Cancer 49(s):538–44CrossRefGoogle ScholarPubMed
Orbell, S. (1996). Cognition and affect after cervical screening: the role of previous test outcome and personal obligation in future uptake expectationsSocial Science and Medicine 43(8):1237–43CrossRefGoogle ScholarPubMed
Wilson, J. D., Hines, B. (2000). Nurse counselling for women with abnormal cervical cytology improves colposcopy and cytology follow up attendance ratesSexually Transmitted Infections 76(4):322CrossRefGoogle ScholarPubMed
Paskett, E. D., Carter, W. B., Chu, J.et al. (1990). Compliance behavior in women with abnormal Pap smears. Developing and testing a decision modelMedical Care 28(7):643–56CrossRefGoogle ScholarPubMed
Reelick, N. F., Haes, W. F., Schuurman, J. H. (1984). Psychological side-effects of the mass screening on cervical cancerSocial Science and Medicine 18(12):1089–93CrossRefGoogle ScholarPubMed
Pisano, E. D., Earp, J., Schell, M.et al. (1998). Screening behavior of women after a false-positive mammogramRadiology 208(1):245–9CrossRefGoogle ScholarPubMed
Pisano, E. D., Earp, J. A., Gallant, T. L. (1998). Screening mammography behavior after a false positive mammogramCancer Detection and Prevention 22(2):161–7CrossRefGoogle ScholarPubMed
Gram, I. T., Slenker, S. E. (1992). Cancer anxiety and attitudes toward mammography among screening attenders, nonattenders, and women never invitedAmerican Journal of Public Health 82(2):249–51CrossRefGoogle ScholarPubMed
Schwartz, L., Woloshin, S., Sox, H.et al. (2000). US women's attitudes to false-positive mammography results and detection of ductal carcinoma in situ: cross-sectional surveyOriginal Research 173:307–9Google ScholarPubMed
Benedict, S., Williams, R. D., Baron, P. L. (1994). The effect of benign breast biopsy on subsequent breast cancer detection practicesOncology Nursing Forum 21(9):1467–75Google ScholarPubMed
Lindfors, K. K., O'Connor, J., , Parker, R. A. (2001). False-positive screening mammograms: effect of immediate versus later work-up on patient stressRadiology 218(1):247–253CrossRefGoogle ScholarPubMed
Lindholm, E., Berglund, B., Kewenter, J.et al. (1997). Worry associated with screening for colorectal carcinomasScandinavian Journal of Gastroenterology 32(3):238–45CrossRefGoogle ScholarPubMed
Mant, D., Fitzpatrick, R., Hogg, A.et al. (1990). Experiences of patients with false positive results from colorectal cancer screeningBritish Journal of General Practice 40(339):423–5Google ScholarPubMed
Winawer, S. J., Miller, C., Lightdale, C.et al. (1987). Patient response to sigmoidoscopy. a randomized, controlled trial of rigid and flexible sigmoidoscopyCancer 60(8):1905–83.0.CO;2-K>CrossRefGoogle ScholarPubMed
Drossman, D. A., Brandt, L. J., Sears, C.et al. (1996). A preliminary study of patients' concerns related to GI endoscopyAmerican Journal of Gastroenterology 91(2):287–91Google ScholarPubMed
McCarthy, B. D., Moskowitz, M. A. (1993). Screening flexible sigmoidoscopy: patient attitudes and complianceJournal of General Internal Medicine 8(3):120–5CrossRefGoogle ScholarPubMed
Pedersen, K. V., Carlsson, P., Varenhorst, E.et al. (1990). Screening for carcinoma of the prostate by digital rectal examination in a randomly selected populationBritish Medical Journal 300(6731):1041–4CrossRefGoogle Scholar
Myers, R. E., Hyslop, T., Wolf, T. A.et al. (2000). African-American men and intention to adhere to recommended follow-up for an abnormal prostate cancer early detection examination resultUrology 55(5):716–20CrossRefGoogle ScholarPubMed
Lauver, D., Rubin, M. (1991). Women's concerns about abnormal Papanicolaou test resultsJournal of Obstetrics, Gynecology, and Neonatal Nursing 20(2):154–9CrossRefGoogle ScholarPubMed
Quilliam, S. (1989). Emotional aspects of positive smearsHealth Visit 62(10):308–9Google ScholarPubMed
Wardle, J., Sutton, S., Williamson, S.et al. (2000). Psychosocial influences on older adults' interest in participating in bowel cancer screeningPreventive Medicine 31(4):323–34CrossRefGoogle ScholarPubMed
Auvinen, A. (1996). Prospective evaluation plan for randomised trials of prostate cancer screening. The International Prostate Cancer Screening Trial Evaluation GroupJournal of Medical Screening 3(2):97–104CrossRefGoogle ScholarPubMed
Kramer, B. S. (1993). Prostate cancer screening: what we know and what we need to knowAnnals of Internal Medicine 119(9):914–23CrossRefGoogle ScholarPubMed
Carvalhal, G. F., Smith, D. C., Ramos, C.et al. (1999). Correlates of dissatisfaction with treatment in patients with prostate cancer diagnosed through screeningJournal of Urology 162(1):113–18CrossRefGoogle ScholarPubMed
Stewart-Brown, S. F. A. (1997). Screening could seriously damage your healthBritish Medical Journal 1314(7080):533–4CrossRefGoogle Scholar
Cockburn, J., Staples, M., Hurley, S. F.et al. (1994). Psychological consequences of screening mammographyJournal of Medical Screening 1(1):7–12CrossRefGoogle ScholarPubMed
Gerard, K., Salkeld, G., Hall, J. (1990). Counting the costs of mammography screening: first year results from the Sydney studyMedical Journal of Australia 152(9):466–71Google ScholarPubMed
Rimer, B. K., Bluman, L. G. (1997). The psychosocial consequences of mammographyJournal of the National Cancer Institute Monographs 22:131–8CrossRefGoogle Scholar
Fletcher, S. W. (1999). False-positive screening mammograms: good news, but more to doAnnals of Internal Medicine 131(1):60–2CrossRefGoogle ScholarPubMed
Sickles, E. A. (1991). Periodic mammographic follow-up of probably benign lesions: results in 3,184 consecutive casesRadiology 179(2):463–8CrossRefGoogle ScholarPubMed
Breen, N., Wagener, D. K., Brown, M. L.et al. (2001). Progress in cancer screening over a decade: results of cancer screening from the 1987, 1992, and 1998 National Health Interview SurveysJournal of the National Cancer Institute 93(22):1704–13CrossRefGoogle Scholar
Olivotto, I. A., Kan, L., Coldman, A. J. (1998). False positive rate of screening mammographyNew England Journal of Medicine 339(8):560Google ScholarPubMed
Elmore, J. G., Barton, M. B., Moceri, V. M.et al. (1998). Ten-year risk of false positive screening mammograms and clinical breast examinationsNew England Journal of Medicine 338(16):1089–96CrossRefGoogle ScholarPubMed
Lidbrink, E., Elfving, J., Frisell, J.et al. (1996). Neglected aspects of false positive findings of mammography in breast cancer screening: analysis of false positive cases from the Stockholm trialBritish Medical Journal 312(7026):273–6CrossRefGoogle ScholarPubMed
Lipkus, I. M., Halabi, S., Strigo, T. S.et al. (2000). The impact of abnormal mammograms on psychosocial outcomes and subsequent screeningPsycho-Oncology 9(5):402–103.0.CO;2-U>CrossRefGoogle ScholarPubMed
Veit, C. T., Ware, J. E. Jr. (1983). The structure of psychological distress and well-being in general populationsJournal of Consulting Clinical Psychology 51(5):730–42CrossRefGoogle ScholarPubMed
Fallowfield, L. (1990). The Quality of Life: The Missing Measurement in Health Care. New York, NY: Oxford University Press
Mould, T. A., Rodgers, M. E., Singer, A. (1995). The psychological reaction of women to a colposcopy clinicBritish Journal of Obstetrics and Gynecology 102(5):428–9CrossRefGoogle ScholarPubMed
Campion, M. J., Brown, J. R., McCance, D. J.et al. (1988). Psychosexual trauma of an abnormal cervical smearBritish Journal of Obstetrics and Gynecology 95(2):175–81CrossRefGoogle ScholarPubMed
Pisano, E. D. (1998). Screening behavior of women after a false-positive mammogramRadiology 208(1):245–9CrossRefGoogle ScholarPubMed
Miller, A. B. (1993). Canadian National Breast Screening Study: public health implicationsCanadian Journal of Public Health 84(1):14–16Google ScholarPubMed
Lerman, C. E. (1993). Psychosocial impact of cancer screeningOncology (Huntington) 7(4):67–72Google ScholarPubMed
Gotay, C. C. (1984). The experience of cancer during early and advanced stages: the views of patients and their matesSocial Science and Medicine 18(7):605–13CrossRefGoogle ScholarPubMed
Weil, J. G. (1997). Positive findings of mammography may lead to suicideBritish Medical Journal 314(7082):754–5CrossRefGoogle ScholarPubMed
Fentiman, I. S. (1988). Pensive women, painful vigils: consequences of delay in assessment of mammographic abnormalitiesLancet 1(8593):1041–2CrossRefGoogle ScholarPubMed
McCarthy, B. D. (1997). Screening mammography use: the importance of a population perspectiveAmerican Journal of Preventive Medicine 12(2):91–5CrossRefGoogle Scholar
Kerner, J. F., Mandelblatt, J. S., Silliman, R. A.et al. (2001). Screening mammography and breast cancer treatment patterns in older womenBreast Cancer Research and Treatment 69(1):81–91CrossRefGoogle ScholarPubMed
Burman, M. L. (1999). Effect of false-positive mammograms on interval breast cancer screening in a health maintenance organizationAnnals of Internal Medicine 131(1):1–6CrossRefGoogle Scholar
Stidley, C. A., Tollestrup, K., Frost, F.et al. (2001). Mammography utilization after a benign breast biopsy among Hispanic and non-Hispanic womenCancer 91(9):1716–233.0.CO;2-0>CrossRefGoogle ScholarPubMed
Bull, A. R., Campbell, M. J. (1991). Assessment of the psychological impact of a breast screening programmeBritish Journal of Radiology 64(762):510–15CrossRefGoogle ScholarPubMed
McCaul, K. D., Schroeder, D. M., Reid, P. A. (1996). Breast cancer worry and screening: some prospective dataHealth Psychology 15(6):430–3CrossRefGoogle ScholarPubMed
Feeny, this volume, Chapter 4
Gold, M. R., Siegel, J. E., Russell, L. B. et al. (1996). Cost-Effectiveness in Health and Medicine. New York, NY: Oxford University Press
Olsson, P., Armelius, K., Nordahl, G. (1999). Women with false postivie screening mammograms: how do they cope?Journal of Medical Screening 6(2):89–93CrossRefGoogle Scholar
Pater, J., Osoba, D., Zee, B.et al. (1998). Effects of altering the time of administration and the time frame of quality of life assessments in clinical trials: an example using the EORTC QLQ-C30 in a large anti-emetic trialQuality of Life Research 7(3):273–8CrossRefGoogle Scholar
Katz, S. (1963). Studies of illness in the aged. The index of ADL: a standardized measure of biological and psychological functionJournal of the American Medical Association 185:914–19CrossRefGoogle Scholar
Llewellyn-Thomas, H., Sutherland, H. J., Tibshirani, R.et al. (1982). The measurement of patients'values in medicineMedical Decision Making 2(4):449–62CrossRefGoogle Scholar
Nord, E., Pinto, J. L., Richardson, J.et al. (1999). Incorporating societal concerns for fairness in numerical valuations of health programmesHealth Economics 8(1):25–393.0.CO;2-H>CrossRefGoogle ScholarPubMed
Dolan, P., Gudex, C. (1995). Time preference, duration and health state valuationsHealth Economics 4(4):289–99CrossRefGoogle ScholarPubMed
Torrance, G. W. (1976). Toward a utility theory foundation for health status index modelsHealth Services Research 11:349–69Google Scholar

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