Cancer Worry Scale Research Articles

The development of scales to measure childhood cancer survivors' readiness for transition to long-term follow-up care as adults.

PurposeTo develop and validate scales to measure constructs that survivors of childhood cancer report as barriers and/or facilitators to the process of transitioning from paediatric to adult‐oriented long‐term follow‐up (LTFU) care.MethodsQualitative interviews provided a dataset that were used to develop items for three new scales that measure cancer worry, self‐management skills and expectations about adult care. These scales were field‐tested in a sample of 250 survivors aged 15–26 years recruited from three Canadian hospitals between July 2011 and January 2012. Rasch Measurement Theory (RMT) analysis was used to identify the items that represent the best indicators of each scale using tests of validity (i.e. thresholds for item response options, item fit statistics, item locations, differential item function) and reliability (Person Separation Index). Traditional psychometric tests of measurement performance were also conducted.Results RMT led to the refinement of a 6‐item Cancer Worry scale (focused on worry about cancer‐related issues such as late effects), a 15‐item Self‐Management Skills scale (focused on skills an adolescent needs to acquire to manage their own health care), and a 12‐item Expectations scale (about the nature of adult LTFU care). Our study provides preliminary evidence about the reliability and validity of these new scales (e.g. Person Separation Index ≥ 0.81; Cronbach's α ≥ 0.81; test–retest reliability ≥ 0.85).ConclusionThere is limited knowledge about the transition experience of childhood cancer survivors. These scales can be used to investigate barriers survivors face in the process of transition from paediatric to adult care.

The Cancer Worry Scale

In 9% to 34% of cancer patients, the fear of cancer recurrence becomes so overwhelming that it affects quality of life. Clinicians need a brief questionnaire with a cutoff point that is able to differentiate between high- and low-fearful survivors. This study investigated if the Cancer Worry Scale (CWS) could serve as an instrument to detect high levels of fear of recurrence in female breast cancer survivors. One hundred ninety-four female breast cancer patients were assessed up to 11 years after their primary treatment for cancer. The women returned the questionnaires including the 8-item CWS, 2 items of the Cancer Acceptance Scale, the Checklist Individual Strength-Fatigue subscale, and the Cancer Empowerment Questionnaire. A cutoff score of 13 versus 14 (low: ≤13, high: ≥14) on the CWS was optimal for detecting severe levels of fear of recurrence. A cutoff score of 11 versus 12 (low: ≤11, high: ≥12) was optimal for screening. The Cronbach α coefficient of the CWS was .87; evidence to support the convergent and divergent validity of the CWS was also obtained. The CWS is able to detect high levels of fear of recurrence. The CWS is a reliable and valid questionnaire to assess fear of recurrence in breast cancer survivors. With the CWS, it is possible for nurses to screen breast cancer survivors for severe levels of fear of cancer recurrence. Thereby, nurses can screen and assist survivors in accessing appropriate and available support.

Risk perception, worry, and test acceptance in average-risk women who undergo ovarian cancer screening

We evaluated baseline knowledge of ovarian cancer risk and perceptions toward ovarian cancer screening (OCS) by initiating the normal risk ovarian screening study. Average-risk, postmenopausal women were enrolled between 2001 and 2011 as they entered the normal risk ovarian screening study. Participants completed baseline surveys of risk perception, cancer worry (Cancer Worry Scale), anxiety (State-Trait Anxiety Inventory), health and well-being survey (SF-36 HEALTH SURVEY), and acceptability of OCS. Of the 1242 women who were enrolled, 925 women (74.5%) completed surveys. The respondents estimated a mean lifetime risk of ovarian cancer of 29.9%, which is much higher than the actual risk of 1.4% for women in the United States. Only 2.8% of participants correctly estimated their risk; 35.4% of the participants reported their lifetime risk to be ≥50%. Cancer worry was low, with a median Cancer Worry Scale score of 7 of 24. Anxiety was comparable with published norms for women in this age group, with median STAI-State and STAI-Trait scores of 30 and 29 of 80, respectively. Overall, women reported good physical and mental well-being. In terms of OCS acceptability, 97.2% of respondents agreed or strongly agreed that "the benefits of screening outweigh the difficulties." Very few women were reluctant to undergo OCS because of time constraints (1.1%), pain (2.0%), or embarrassment (1.9%). Average-risk women who underwent OCS highly overestimated their risk of ovarian cancer. Despite this, participants reported low cancer worry and anxiety. The discrepancy between knowledge of and attitudes toward ovarian cancer risk highlights the need for educational efforts in this area.

Fear of disease progression in patients with gastrointestinal stromal tumors (GIST).

10549 Background: GIST are rare tumors and before 2000 patients had a dismal prognosis when metastasized. Since the introduction of imatinib and other tyrosine kinase inhibitors overall survival has increased from less than 1 year before 2001 to more than 5 years now. Research on psychosocial consequences for this particular cancer type is scarce. This study focuses on quality of life and fear of disease progression in GIST patients. Methods: Eighty patients with locally advanced or metastatic GIST, being treated with imatinib or sunitinib, from the Radboud University Nijmegen Medical Centre in the Netherlands were asked to participate. Patients completed self-report questionnaires including the EORTC-QLQ-C30, the Cancer Worry Scale, and the Fear of Cancer Recurrence Inventory. Results: Fifty two patients (median age 64.2; range 22-84 years) completed the questionnaires. Two subgroups were identified: patients with locally advanced (n= 27) and metastatic GIST (n= 25). Overall, GIST patients demonstrate a good global quality of life (EORTC-QLQ-C30 mean global health 76.1). However, 50% of them (n= 26) experienced high levels of fear of cancer progression (CWS cut-off point ≥ 14). High levels of fear were not associated with age, gender or between patients with locally advanced or metastatic GIST. Subgroup analyses revealed that patients with high levels of fear of disease progression showed significantly higher levels of psychological distress related to fear of cancer progression and more functional impairments including domains that can be disturbed by fear of cancer progression (e.g. work, daily and social activities, the ability to make future plans or set life goals). Conclusions: Despite a good overall quality of life, a substantial percentage of GIST patients experience high levels of fear of cancer progression, experiencing more psychological distress and more functional impairments compared to patients with low levels of fear. No relation was found with demographic variables nor with stage of disease. This research demonstrates that it is necessary to focus on more specific rather than general quality of life of GIST patients.

Su1817 EUS Features of Chronic Pancreatitis Do Not Correlate With Pathologic Findings of Abnormal Parenchyma in High-Risk Pancreas Cancer Patients Undergoing Pancreatic Resection

Background: The success of pancreatic cancer (PC) surveillance depends to a large extent on the commitment of participants to adhere to the repeated follow-up investigations. Though the results of our recently conducted retrospective study showed that the burden of PC surveillance is acceptable, a prospective assessment was warranted to document the mental and psychological impact of PC screening. We aimed to investigate possible changes in cancer worries and levels of anxiety and depression in high-risk individuals participating in a PC surveillance program. Methods Eligible for this prospective questionnaire study were high-risk individuals participating in our multicenter nationwide endoscopic ultrasound (EUS)-MRI-based PC-surveillance study. High-risk individuals were those with a strong family history of PC or carriers of PC-prone gene mutations. Questionnaires, administered both before (pretest) and after (posttest) the baseline PC screening investigations, assessed concerns about developing cancer (CancerWorry Scale), and levels of anxiety and depression (Hospital Anxiety and Depression scale). Results Of the 54 high-risk individuals, 47 (87%) completed both the pretest and posttest questionnaires (38% male, mean age= 52 yr., range 20-74 yrs.). Of these, 44 participated in the PC screening and 3 declined. All participants underwent both EUS and MRI. Prior to undergoing PC screening, 36% of the participants reported being fearful about undergoing EUS, whereas 5% was fearful about the MRI. After screening, 2.3% of all participants feared the next EUS (p<.001) and 2.3% the next MRI. The mean level of depression was significantly higher prior to screening as compared to after screening (p<.001). However, the number of participants with clinical levels of anxiety and/ or depression was low (n=5) and remained stable over time. Prior to, as well as after screening the most frequently reported worries were about the possibility of developing cancer themselves (29% at both time points) and the chance that relatives would develop cancer (19% and 21%, respectively). The 3 individuals who did not undergo screening indicated that they were not very fearful of the MRI or EUS. They also had low levels of anxiety, depression and cancer worries. Conclusion: The results of this prospective study indicate that: (1) the expected burden of EUS is higher than the actual experienced burden; and that (2) mean levels of anxiety, depression and cancer worries are not significantly influenced by participating in the PC screening program. This finding is of great importance for this group that is at high risk of developing pancreatic cancer and might benefit from participation in a life-long repeated PC surveillance program.

Su1818 Barriers to Genetic Testing for Lynch Syndrome

Background: The success of pancreatic cancer (PC) surveillance depends to a large extent on the commitment of participants to adhere to the repeated follow-up investigations. Though the results of our recently conducted retrospective study showed that the burden of PC surveillance is acceptable, a prospective assessment was warranted to document the mental and psychological impact of PC screening. We aimed to investigate possible changes in cancer worries and levels of anxiety and depression in high-risk individuals participating in a PC surveillance program. Methods Eligible for this prospective questionnaire study were high-risk individuals participating in our multicenter nationwide endoscopic ultrasound (EUS)-MRI-based PC-surveillance study. High-risk individuals were those with a strong family history of PC or carriers of PC-prone gene mutations. Questionnaires, administered both before (pretest) and after (posttest) the baseline PC screening investigations, assessed concerns about developing cancer (CancerWorry Scale), and levels of anxiety and depression (Hospital Anxiety and Depression scale). Results Of the 54 high-risk individuals, 47 (87%) completed both the pretest and posttest questionnaires (38% male, mean age= 52 yr., range 20-74 yrs.). Of these, 44 participated in the PC screening and 3 declined. All participants underwent both EUS and MRI. Prior to undergoing PC screening, 36% of the participants reported being fearful about undergoing EUS, whereas 5% was fearful about the MRI. After screening, 2.3% of all participants feared the next EUS (p<.001) and 2.3% the next MRI. The mean level of depression was significantly higher prior to screening as compared to after screening (p<.001). However, the number of participants with clinical levels of anxiety and/ or depression was low (n=5) and remained stable over time. Prior to, as well as after screening the most frequently reported worries were about the possibility of developing cancer themselves (29% at both time points) and the chance that relatives would develop cancer (19% and 21%, respectively). The 3 individuals who did not undergo screening indicated that they were not very fearful of the MRI or EUS. They also had low levels of anxiety, depression and cancer worries. Conclusion: The results of this prospective study indicate that: (1) the expected burden of EUS is higher than the actual experienced burden; and that (2) mean levels of anxiety, depression and cancer worries are not significantly influenced by participating in the PC screening program. This finding is of great importance for this group that is at high risk of developing pancreatic cancer and might benefit from participation in a life-long repeated PC surveillance program.

Su1816 Prospective Evaluation of Psychological Impact of Pancreatic Cancer Surveillance in High-Risk Individuals

Background: The success of pancreatic cancer (PC) surveillance depends to a large extent on the commitment of participants to adhere to the repeated follow-up investigations. Though the results of our recently conducted retrospective study showed that the burden of PC surveillance is acceptable, a prospective assessment was warranted to document the mental and psychological impact of PC screening. We aimed to investigate possible changes in cancer worries and levels of anxiety and depression in high-risk individuals participating in a PC surveillance program. Methods Eligible for this prospective questionnaire study were high-risk individuals participating in our multicenter nationwide endoscopic ultrasound (EUS)-MRI-based PC-surveillance study. High-risk individuals were those with a strong family history of PC or carriers of PC-prone gene mutations. Questionnaires, administered both before (pretest) and after (posttest) the baseline PC screening investigations, assessed concerns about developing cancer (CancerWorry Scale), and levels of anxiety and depression (Hospital Anxiety and Depression scale). Results Of the 54 high-risk individuals, 47 (87%) completed both the pretest and posttest questionnaires (38% male, mean age= 52 yr., range 20-74 yrs.). Of these, 44 participated in the PC screening and 3 declined. All participants underwent both EUS and MRI. Prior to undergoing PC screening, 36% of the participants reported being fearful about undergoing EUS, whereas 5% was fearful about the MRI. After screening, 2.3% of all participants feared the next EUS (p<.001) and 2.3% the next MRI. The mean level of depression was significantly higher prior to screening as compared to after screening (p<.001). However, the number of participants with clinical levels of anxiety and/ or depression was low (n=5) and remained stable over time. Prior to, as well as after screening the most frequently reported worries were about the possibility of developing cancer themselves (29% at both time points) and the chance that relatives would develop cancer (19% and 21%, respectively). The 3 individuals who did not undergo screening indicated that they were not very fearful of the MRI or EUS. They also had low levels of anxiety, depression and cancer worries. Conclusion: The results of this prospective study indicate that: (1) the expected burden of EUS is higher than the actual experienced burden; and that (2) mean levels of anxiety, depression and cancer worries are not significantly influenced by participating in the PC screening program. This finding is of great importance for this group that is at high risk of developing pancreatic cancer and might benefit from participation in a life-long repeated PC surveillance program.

Factors associated with breast cancer worry 3 years after completion of adjuvant treatment

Although many survivors continue to worry about cancer years after completing treatment, little is known about factors associated with cancer worry. This study examined associations between breast cancer worry and demographic and clinical variables, as well as fatigue, symptom burden, and risk perception in a sample of breast cancer survivors 3 years post-adjuvant treatment. We hypothesized that after controlling for demographic and treatment factors, a significant proportion of variance in cancer worry would be explained by greater fatigue severity, more symptom burden, and greater perceived risk of recurrence. Stage 0-II breast cancer patients (N = 202) completed measures of risk perception, cancer worry (modified Lerman's Cancer Worry Scale), symptom burden (Memorial Symptom Assessment Scale), and fatigue severity (Fatigue Symptom Inventory) 3 years after completing adjuvant treatment. Multiple regression analyses were used to determine the proportion of variance in cancer worry accounted for by fatigue, symptom burden, and risk perception after controlling for demographic and clinical variables. Age, fatigue, symptom burden, and risk perception each explained a significant proportion of variance in cancer worry (p < 0.05). Fatigue, symptom burden, and risk perception together accounted for 27% of the variance in cancer worry after controlling for demographic and clinical factors (p < 0.01). The hypothesis was supported that fatigue, symptom burden, and risk perception are associated with cancer worry among breast cancer survivors. It is possible that lingering fatigue and other symptoms may remind breast cancer survivors of their disease.

Psychological impact of recall on women with BRCA mutations undergoing MRI surveillance

Objective The addition of magnetic resonance imaging (MRI) to mammography for surveillance of women with BRCA mutations significantly increases sensitivity but lowers specificity. This study aimed to examine whether MRI surveillance, and particularly recall, is associated with increased anxiety, depression, or breast cancer worry/distress. Methods Women with BRCA mutations in an MRI surveillance study were invited to complete: Hospital Anxiety and Depression Scale (HADS), Lerman’s Breast Cancer Worry Scale, Breast Cancer Worry Interference Scale, and a quality of life rating at 3 time points: 1–2 weeks before (T1), 4–6 weeks after (T2) and 6 months after their annual surveillance (T3). Repeated measures analyses were performed over the 3 time points for recalled and non-recalled women. Results 55 women (30 BRCA1, 25 BRCA2) completed study instruments at T1 and T2, and 48 at T3. Eighteen women (32%) were recalled for additional imaging. At T1, 27 women (49%) were above HADS threshold for “possible cases” for anxiety (score ≥8). Recalled (but not non-recalled) women had a significant increase of HADS anxiety at T2 which dropped to below baseline by T3. No group differences were observed in terms of change over time in other quantitative psychological measures. Conclusions While breast MRI surveillance did not have a detrimental psychological impact on women with a BRCA1 or BRCA2 mutation, recalling these very high-risk women for further imaging after a false positive MRI scan temporarily increased their global anxiety.

Genetic risk, perceived risk, and cancer worry in daughters of breast cancer patients.

This study explored relationships between worry, perceived risk for breast cancer, consulting a genetic counselor, having genetic testing, and genetic risk for women whose mothers had breast cancer. Analyses involved data from a community-based phone survey of women whose mothers had breast cancer. Participants were categorized as having low, intermediate, or high genetic risk based on their reported family history, in accordance with an accepted classification scheme. The Lerman Breast Cancer Worry Scale measured worry, and participants reported their perceived lifetime likelihood of breast cancer, risk compared to others, and chance from 1 to 100. ANOVA, chi-square, and multiple regression analyses were conducted as appropriate. One hundred-fifty women participated. Mean age was 38 years, and 81% were Caucasian. Fifty-two women had low, 74 had intermediate, and 24 had high genetic risk for breast cancer. There were no significant differences in worry or perceived risk by hereditary risk category. Most high-risk women (91%) had not spoken with a genetic counselor, and no one had previous genetic testing. These findings suggest perceived risk, worry about breast cancer, and use of expert consultation do not match the genetic contribution to risk. There is a need for effectively stratifying and communicating risk in the community and providing tailored reassurance or referral for high-risk assessment.

Versión española de la Cancer Worry Scale (Escala de Preocupación por el Cáncer: adaptación cultural y análisis de la validez y la fiabilidad)

Background and objectives The worry for falling ill has been described as a key element in the change of preventive attitudes. Levels of cancer worry not well fitted have been associated with inadequate adherence to preventive strategies. There is not a Spanish validated scale to evaluate the degree of worry for the cancer in our population. The aim of the present study was to perform the cross cultural adaptation and validation of the Cancer Worry Scale described by Lerman. Patients and method A translation, re-translation of the Cancer Worry Scale to Spanish was done. Validation of the Spanish scale was performed by means of the factorial analysis of principal components with the rotation varimax test in a sample of 200 healthy women with family history of breast cancer. Results The Escala de Preocupación por el Cáncer (EPC) is the Spanish version of the Cancer Worry Scale and it contains 6 items with a total value ranging from 6 (minimal worry) to 24 (maximum worry). The analysis of content validity demonstrated that the EPC is conceptually equivalent to the original scale. The factorial analysis showed a unique factor that explains 53.07% of the variance confirming the unique dimension. The EPC presented good reliability test - re-test with an Intraclass Correlation Coefficient of 0.777. The Cronbach's alpha was 0.835 for the complete of the scale. Conclusions The EPC is a validated Spanish scale to measure the cancer worry in healthy individuals, which shows a correct content validity and reliability.

Long‐term cohort study of women at intermediate risk of familial breast cancer: experiences of living at risk

To identify how women adjusted to living at intermediate risk of breast cancer six years following risk assessment, and what factors contributed to health service usage. Two studies are reported. Both report data from a cohort of women found at intermediate risk of breast cancer six years previously. In the first, 30 women with a range of Cancer Worry Scale (Lerman et al. Health Psychol 1991;10:259-267) scores were interviewed about how they lived with their risk of cancer and their use of health resources. The generalisability of these findings was tested in a sample of 387 women from the same cohort using psychometrically appropriate measures. In study 1, women scoring above the median baseline BCWS scale score were most likely to perceive their family history as a burden, exaggerate their susceptibility to breast cancer, not be reassured by genetic counselling, be focussed on the need for mammographic screening, and have a low reliance on breast self-examination. Key findings of the second study were that over a quarter of the cohort were experiencing at least moderate levels of intrusive worries. Worries were associated with perceptions of high personal vulnerability to and severity of cancer and breast cancer being highly salient. Women aged over 50 years with high levels of worry-related distress were most likely to request a mammogram. The high levels of distress in this cohort reinforce the need to provide appropriate interventions for vulnerable women following risk assessment.

Management strategies for women at high risk for breast and ovarian cancer: Are women satisfied?

1524 Background: Women at high risk for breast and ovarian cancer have two major management options to reduce their risk of ovarian cancer, periodic screening (PS) or prophylactic oophorectomy (PO). Little is known regarding patient satisfaction levels with choice of risk reduction strategy. Our objective was to determine levels of patient satisfaction with PO versus PS and to identify factors which may influence satisfaction. Methods: As part of a larger study, women who received BRCA1/2 testing before July 2005 were sent a follow-up patient questionnaire packet. We are reporting on the Cancer Worry Scale and Satisfaction With Decision (SWD) scale (range of possible scores, 6–30). The lowest 10th percentile of the SWD score (21) was used to define low satisfaction. Chi-square, t-Test and Mann-Whitney tests were used for statistical analyses. Results: A total of 540 surveys were mailed and 309 responses were received (57%). We excluded 127 patients due to history of an oophorectomy for benign or malignant indications or incomplete SWD scale. The median age of respondents was 48.2. 60/182 women (33%) had BRCA mutations and 64/182 (35.2%) underwent PO. The overall satisfaction rate among respondents was high (median score 29, range 14–30). Median SWD score was significantly higher in patients in the PO group compared to the PS group (30.0 vs. 26.5, p&lt;.001). Patients with BRCA mutations had higher median SWD scores, regardless of management type (30.0 vs. 28.0, p=.013). Low satisfaction scores were associated with the perception that the decision between PO and PS was difficult to make (p=.001). Patients who expressed ongoing difficulty in their decision-making also had lower satisfaction scores (p=.016). Satisfaction was unrelated to demographics, clinical factors, or concerns of cancer risk. Conclusions: In our study, the majority of women at high risk for breast and ovarian cancer were satisfied with their choice of risk reduction strategy. In particular, women who chose PO had higher levels of overall satisfaction. Difficulty with decision-making was associated with lower satisfaction levels. Improved education and support of these women through the decision-making process may enhance overall levels of satisfaction with risk reduction strategy. No significant financial relationships to disclose.

Family system characteristics and psychological adjustment to cancer susceptibility genetic testing: a prospective study

This study examined prospectively the contribution of family functioning, differentiation to parents, family communication and support from relatives to psychological distress in individuals undergoing genetic susceptibility testing for a known familial pathogenic BRCA1/2 or Hereditary nonpolyposis colorectal cancer-related mutation. Family functioning, differentiation to parents, hereditary cancer-related family communication and perceived support from relatives were assessed in 271 participants for genetic testing before test result disclosure. Hereditary cancer distress (assessed by the Impact of Event Scale) and cancer worry (assessed by the Cancer Worry Scale) were assessed before, 1 week after, and 6 months after test result disclosure. Participants reporting more cancer-related distress over the study period more frequently perceived the communication about hereditary cancer with relatives as inhibited, the nuclear family functioning as disengaged-rigid or enmeshed-chaotic, the support from partner as less than adequate and the relationship to mother as less differentiated. Especially, open communication regarding hereditary cancer and partner support may be important buffers against hereditary cancer distress. Identifying individuals with insufficient sources of support and addressing the family communication concerning hereditary cancer in genetic counseling may help the counselee to adjust better to genetic testing.

The cancer worry chart: a single‐item screening measure of worry about developing breast cancer

Brief pictograph measures of health functioning have clinical value to office-based practice. Many women with a close family history of breast cancer will experience worry about their risk of developing breast cancer that influences decision-making and can interfere with health-related functioning. To develop a clinically - useful triage measure of breast cancer worry for the field setting of office based practice. qualitative pilot testing followed by mailed survey. women registered with the Cancer Genetics Network who have a first or second-degree family history of breast cancer and no personal history of any cancer. Novel measure: single pictograph item modeled upon the Dartmouth COOP Charts. Comparison gold-standard measure: four-item Cancer Worry Scale (CWS). Pilot testing: participants found the item to be easily understood, rapidly completed and unobtrusive. Quantitative: 469 women responded (78% response rate); the Cancer Worry Chart demonstrated strong correlation to the CWS (Pearson correlation coefficient: 0.66, P < 0.001); Receiver operator curve identified favorable characteristics (AUC = 0.86) of the Cancer Worry Chart for identifying cancer worry-related mood or social role dysfunction. The new Cancer Worry Chart is a valid triage measure for breast cancer worry.

Validation of a Quality-of-Life Instrument for Patients With Nonmelanoma Skin Cancer

To validate a disease-specific quality-of-life instrument--the Skin Cancer Index--intended to measure quality-of-life issues relevant to patients with nonmelanoma skin cancer. Internal reliability, convergent and divergent validity with existing scales, and factor analyses were performed in a cross-sectional study of 211 patients presenting with cervicofacial nonmelanoma skin cancer to a dermatologic surgery clinic. Factor analyses of the Skin Cancer Index confirmed a multidimensional scale with 3 distinct subscales-emotional, social, and appearance. Excellent internal validity of the 3 subscales was demonstrated. Substantial evidence was observed for convergent validity with the Dermatology Life Quality Index, Rosenberg Self-Esteem Scale, Lerman's Cancer Worry Scale, and Medical Outcomes Survey Short-Form 12 domains for vitality, emotion, social function, and mental health. These findings validate a new disease-specific quality-of-life instrument for patients with cervicofacial nonmelanoma skin cancer. Studies on the responsiveness of the Skin Cancer Index to clinical intervention are currently under way.

Feasibility of familial PSA screening: psychosocial issues and screening adherence.

This study examined factors that predict psychological morbidity and screening adherence in first-degree relatives (FDRs) taking part in a familial PSA screening study. Prostate cancer patients (index cases – ICs) who gave consent for their FDRs to be contacted for a familial PSA screening study to contact their FDRs were also asked permission to invite these FDRs into a linked psychosocial study. Participants were assessed on measures of psychological morbidity (including the General Health Questionnaire; Cancer Worry Scale; Health Anxiety Questionnaire; Impact of Events Scale); and perceived benefits and barriers, knowledge; perceived risk/susceptibility; family history; and socio-demographics. Of 255 ICs, 155 (61%) consented to their FDRs being contacted. Of 207 FDRs approached, 128 (62%) consented and completed questionnaires. Multivariate logistic regression revealed that health anxiety, perceived risk and subjective stress predicted higher cancer worry (P=0.05). Measures of psychological morbidity did not predict screening adherence. Only past screening behaviour reliably predicted adherence to familial screening (P=0.05). First-degree relatives entering the linked familial PSA screening programme do not, in general, have high levels of psychological morbidity. However, a small number of men exhibited psychological distress.

Intensive radiologic surveillance: a focus on the psychological issues

Although women who carry BRCA1 or BRCA2 mutations have up to an 85% lifetime risk of breast cancer, the majority choose to forego prophylactic mastectomy, which has been proven to markedly lower breast cancer mortality, and opt for lifelong intensive surveillance. Whether surveillance lowers breast cancer mortality in these women is unknown. However, in a formal survey of 34 of these women, 82% indicated a strong belief in the ability of surveillance to find breast cancer at a stage when it is still curable. Since 1997 we have been conducting a study to compare the sensitivity of breast magnetic resonance imaging (MRI), ultrasound, mammography and clinical breast examination (CBE) in women at high risk for hereditary breast cancer. Breast cancer incidence rates have been even higher than predicted for this population. The addition of MRI and ultrasound to conventional surveillance with mammography and CBE significantly improves sensitivity, but at the expense of decreased specificity. Two years ago we began a formal study of distress and breast cancer anxiety. A sample of 25 new and ongoing participants in the surveillance study have completed the Hospital Anxiety and Depression Scale together with the Breast Cancer Worry Scale, up to six times per year over a 2-year period. To date there has been no evidence of any impact of intensive surveillance, including false-positive studies, on anxiety, depression or breast cancer worry.