Gender differences in cancer carer psychological distress: an analysis of moderators and mediators.

Women cancer carers report higher rates of distress than men; however, there is little understanding of the mechanisms underlying these gender differences. The aim of this study was to examine the potential mediating roles of burden of care, unmet needs, self-silencing, self-efficacy and optimism, and the potential moderating influence of social support, cancer stage, patient gender, time spent caring and other responsibilities, on gender differences in carer distress. Of 329 informal cancer carers (245 women, 119 men), women reported significantly more anxiety, burden of care and unmet needs than men. In the mediation analysis, gender differences in anxiety were fully explained by both the independent contribution and combination of: Disrupted Schedule, Health Problems and Emotional and Spiritual Unmet Needs. Women cared for both men and women patients, across a broad range of relationships, whereas men predominantly cared for their female partner. There was no gender difference in number of hours spent caring or in companionship, amount of support received, and additional responsibilities for children, housework or studies, and none of these factors acted as moderators of gender differences in anxiety. It is concluded that women's gendered role is associated with unmet needs and burden of care, resulting in greater anxiety.

Life after cancer: couples' and partners' psychological adjustment and supportive care needs.

GOALS OF WORK: Partners of cancer patients may experience significant distress at the time of treatment and many may experience persistent difficulties, although little research has examined their longer term psychosocial outcomes or supportive care needs. MATERIALS AND METHODS: One hundred and fifty-four cancer survivors who were 1-11 years post diagnosis and disease-free and their partners completed mailed questionnaires. MAIN RESULTS: A positive relationship was found between psychological distress and supportive care needs both within and between partner and survivor samples. Partners reported high levels of anxiety and supportive care needs, most frequently concerning relationships and the impact of the cancer illness. Partners within couples reported both shared and unique needs, although agreement on ratings of shared needs was low. Needs did not diminish over time although partners demonstrated psychological resilience and reported positive outcomes. Predictors of distress and unmet needs were explored: physical QOL, relationship satisfaction, and total needs contributed to variability in partners' distress; relationship satisfaction and total needs were associated with survivors' distress. Distress and relationship satisfaction were associated with partners' unmet needs; only distress was associated with survivors' unmet needs. CONCLUSIONS: Partners are not merely providers of support, but need support themselves many years after a cancer diagnosis and in the context of apparently cured disease. The quality of the dyadic relationship may be critical in determining both partner and survivor distress and needs, and may prove a useful target for psychosocial interventions.

Assessing unmet supportive care needs in partners of cancer survivors: the development and evaluation of the Cancer Survivors' Partners Unmet Needs measure (CaSPUN).

BACKGROUND: Partners of cancer patients typically provide the majority of patients' emotional and physical care. Partners may be profoundly affected by the cancer and may experience ongoing supportive care needs across the survivorship continuum. Research has been restricted by a lack of psychometrically evaluated measures and in this study, a self-report measure of partners' needs was developed and empirically evaluated. METHODS: Questionnaire items generated from a qualitative study were constructed into a 47- item unmet need measure (Cancer Survivors' Partners Unmet Needs measure, CaSPUN). The psychometric properties of the CaSPUN were evaluated in 212 partners of patients who had been diagnosed with cancer 1-11 years earlier and were currently disease-free. RESULTS: The CaSPUN was modified to include 35 unmet need items, 6 positive change items and an open ended item. The CaSPUN demonstrates a high level of acceptability, internal consistency and construct validity, although test-retest reliability was moderate. Factor analysis identified five discrete factors: (1) Relationships, (2) Information, (3) Partner Issues, (4) Comprehensive Care and (5) Emotional Support. CONCLUSIONS: The CaSPUN permits the identification of long-term supportive care needs in generic populations of cancer survivors' partners and will assist with the formulation of recommendations regarding required supportive care services.

The development and evaluation of a measure to assess cancer survivors' unmet supportive care needs: the CaSUN (Cancer Survivors' Unmet Needs measure).

BACKGROUND: Many cancer survivors experience ongoing morbidity over the survivorship continuum and their supportive care needs have yet to be comprehensively assessed. METHODS: This study aimed to develop and empirically evaluate a self-report measure of cancer survivors' supportive care needs. In Phase I, questionnaire items were generated based upon previous qualitative research that identified both unique and shared needs in survivors and their partners; items were constructed into the Cancer Survivors' Unmet Needs measure (CaSUN). In Phase 2, the CaSUN was completed by 353 cancer survivors who had been diagnosed with cancer between 1 and 15 years earlier and were currently disease-free. RESULTS: After modification, the CaSUN included 35 unmet need items, 6 positive change items and an open-ended question. Good acceptability, internal consistency and validity were demonstrated, although test-retest reliability was low. Maximum likelihood factor analysis identified five discrete factors: Existential Survivorship, Comprehensive Care, Information, Quality of Life and Relationships. CONCLUSIONS: Preliminary data indicates that the CaSUN meets the majority of psychometric criteria for assessment measures, although its low test-retest reliability awaits further investigation. The CaSUN will facilitate the evaluation of supportive care services and generation of service delivery recommendations for cancer survivors.

Early cervical cancer rescreening.

INTRODUCTION: The extent of early cervical rescreening, defined as rescreening earlier than the recommended interval for a given initial test result, is difficult to determine mainly because the testing history of women is incomplete, especially with newer population based screening registers. METHODS: Estimation of early rescreening is based on analysis of a 1 month cohort of women (February 1997) recorded on the New South Wales Pap Test Register (PTR) who initially tested negative and who had no recorded history of a positive test result. For the purposes of estimating early rescreening rates and sources of multiple screening occurring within the recommended 2 yearly screening interval for New South Wales, the cohort excluded the estimated proportion of women with an unrecorded history of a positive result. Approaches to exclusion were different for women with a history of a high grade result (CIN2 or higher) or a low grade result (CIN1 or lower). RESULTS: Characteristic rescreening peaks occurred at 6, 12, 18, 24 and 27 months according to negative result category. The rescreening peak at 27 months illustrates the effect of the PTR late reminder system. After adjusting the cohort for estimated proportions of women with a history of a lesion, the number of women estimated to have rescreened early was approximately 156 000 over 1997-8, and the early rescreening rate was estimated as 15.3% of women who have a Pap test. A feasible target for reducing rescreening through service provider interventions was estimated to be a reduction of 7.4%, based on reducing the overscreening proportion from 15.3% to 7.9% through truncating characteristic rescreening peaks to background levels of rescreening. This represents just under 200 000 screens that could be performed over 2 years on New South Wales women who are underscreened or unscreened without incurring additional costs due to screening. CONCLUSIONS: Reasonable estimates of early cervical rescreening can be derived but some assumptions in estimating the proportion of women with a positive test result history may be needed particularly if a screening programme is new and universal recording of screening data is only recent. Characteristic peaks, as departures from a background of random noise in time plots of rescreening indicate that a component of early rescreening is systemic and the chief source of such variation in screening behaviour would be service providers.

Effects of screening on cervical cancer incidence and mortality in New South Wales implied by influences of period of diagnosis and birth cohort.

STUDY OBJECTIVES: Cervical cancer incidence and mortality in NSW during 1972-1996 is examined under counterfactual assumptions to estimate the number of new cervical cancer cases averted and deaths avoided, with projections to 2006. SETTING: Cervical cancer incident cases and deaths in NSW for 1972-96 were obtained from the NSW Central Cancer Registry, Sydney, Australia. DESIGN: Data were analysed by age-period-cohort (APC) modelling, using Poisson regression. Projection of incidence to 2006 was based on a linear trend for period effects. A counterfactual scenario was constructed assuming stable period effects (1972-74), but modelled cohort effects. Modelled rates were converted to cases and deaths (using mortality:incidence ratios for cervical cancer), and compared with actual data to estimate cancers prevented and deaths averted due to screening. RESULTS: Rising cohort effects with recency of birth were found after controlling for age and period of diagnosis, and declining period effects were identified after controlling for age and birth cohort. The estimated cumulated number of new cases of cervical cancer prevented during 1972-1996 was 3440. The cumulated number of averted deaths over 1972-1996, derived from incident cases, was estimated to be 1610 (including actual declines in the M/I ratio). With no change in the M/I ratio from 1972, estimated cumulated mortality averted due to cervical cancer for 1972-1996 was 1210 deaths. CONCLUSIONS: Cervical screening has prevented a substantial number of new cases of cervical cancer and deaths. In addition, secondary prevention and improved treatment has contributed further to cervical cancer deaths averted.

Variation in cervical cancer screening by region, socio-economic, migrant and indigenous status in women in New South Wales.

The purpose of this study was to estimate the extent of association of cervical screening in NSW women with socio-economic status (SES), rurality, and proportions of non-English speaking background (NESB) and Indigenous status. Data on women who had at least one Pap test over two years (January 1998-December 1999) were obtained from the NSW Pap test Register. Each local government area (LGA) was allocated to categories of population proportions of NESB and Indigenous status, a rurality classification based on population density and remoteness, and to an SES quintile. The odds ratios (OR) of having a Pap test were estimated and confounding adjusted by multiple logistic regression analysis. Implied Pap test rates in urban NESB and in rural Indigenous women were estimated from the modelled estimates. The adjusted OR for a Pap test in large rural centres (1.14) was significantly higher than those for metropolitan or capital city residents (0.9 and 1.0 respectively). Adjusted OR for a Pap test in other rural centres (0.73) and other remote areas (0.64) were significantly lower than those for metropolitan or capital city residents. In urban populations the lowest OR were in areas with both low SES and high proportion of NESB. The lowest OR for Pap screening in rural populations occurred in the most remote areas with the highest proportion of Indigenous women. For urban NESB women the biennial Pap test rate was estimated as 50%, and for rural Indigenous women 29%, compared with the NSW average of 59%.

Cervical screening by socio-economic status in Australia.

OBJECTIVES: To examine differentials and time trends in self-reported Pap test rates by socio-economic status (SES) from the 1989/90 and 1995 Australian National Health Surveys (NHS). METHODS: The unit record data for females were extracted from the two NHSs and combined. The outcome variable of interest was 'having a Pap test in the past three years'. The principal study factor was SES measured as individual characteristics and SES of area of residence. Migrant status, rurality, year of survey and age were controlled for in logistic regression models. RESULTS: Self-reported rates of having a Pap test in the past three years were higher in women from higher compared with lower SES groups. Compared with women with a bachelor or higher degree, the odds of reporting having a Pap test in the past three years in women with no post-school qualification was 0.86 (p<0.0005). Women with a gross annual income of less than $20,000 had significantly lower odds (OR=0.79) compared with women earning $40,000 or more. Blue collar (OR=0.84) and not employed (OR=0.73) women also had significantly lower odds compared to the referent white collar group. CONCLUSION: This study reveals differentials in Pap screening behaviour by individual measures of SES in Australia. Area-based SES measures under-estimated the SES differentials in Pap test rates compared with individual measures. Derived population attributable fractions reveal that about a quarter of self-reported under-screening is accounted for by low SES when measured individually, compared to 8% when SES is measured ecologically.

Relative expression of progesterone receptors A and B in endometrioid cancers of the endometrium.

The nuclear receptor for the female hormone progesterone (PR) is widely expressed in uterine cancer. PR is expressed as two proteins (PRA and PRB) with different functions, and in vitro evidence reveals PRA to inhibit PRB function, so the cellular ratio of PRA:PRB is likely to be an important determinant of progesterone action. The relative expression of PRA and B and their involvement in the pathogenesis of endometrial cancer is not known. The aims of this study were to determine PRA and B expression by dual immunofluorescent histochemistry in endometrial adenocarcinomas compared with expression in normal and hyperplastic glands, and to correlate expression in tumors with clinical features including grade. Significantly lower PR levels were found in tumors compared with normal glands and areas of complex atypical hyperplasia within the same specimen. The normal glands expressed both of the isoforms at similar levels, whereas there was increased predominance of one isoform in hyperplastic areas and in tumors, which suggested that the loss of coordinated expression of PR isoforms was an early event in tumor progression. The majority of tumors [27 (58%) of 46] expressed only one PR isoform, and the proportion expressing either PRA or B was the same [14 (30%) of 46, and 13 (28%) of 46, respectively]. One-half of all tumors ([23 (50%) of 46] expressed either PRA only or a predominance of PRA, and a few tumors [10 (22%) of 46] expressed comparable levels of PRA and B. Similar levels of PRA and B were noted only in FIGO grade 1 tumors, whereas higher grades (2 and 3) were associated with a predominance of one isoform. In summary, expression of only one PR isoform was common in endometrial cancers, which indicates that the decreased PR levels observed in these cancers arise from the loss of one PR isoform. Expression of a single PR isoform was associated with higher clinical grade, which suggests a relationship between the loss of PR isoform expression and features of poorer prognosis. Disruption of relative PR isoform expression was observed in complex atypical hyperplasia, which suggests that early alterations in the ratio of PRA:PRB may precede and/or be implicated in the development of endometrial adenocarcinoma. Alterations in the ratio of PR isoform expression are likely to cause disordered regulation of target genes, resulting in altered progestin action in the uterus, and this may be involved in the pathogenesis of endometrial cancer.

Cervical screening in migrants to Australia.

OBJECTIVE: To examine differentials and time trends in self-reported Pap test rates by migrant status from the 1989/90 and 1995 Australian National Health Surveys (NHS). METHOD: Unit record data for females with the variables of interest were extracted from the 1989/90 and 1995 NHS and combined. The dichotomous outcome variables were 'ever had a Pap test' and 'had a Pap test within three years'. The principal study factor was country-of-birth, but language spoken at home (English or not) was also examined. The indirect age-standardised screening ratio was used to calculate proportions of 'ever had a Pap test' and 'had a Pap test within three years' and differences were tested statistically using logistic regression analysis for each year of survey by migrant status. RESULTS: Odds ratios for rates of reporting 'ever had a Pap test' were significantly lower in women born in southern Europe, Italy, other countries, southern Asia, Middle East, Greece and South-East Asia compared with Australian-born. Reported rates of 'ever had a Pap test' were significantly higher in the 1995 NHS (p<0.001). There were significant increases in screening for the Australian-born, New Zealand-born, and women born in southern Europe, South-East Asia, South Asia and Italy, and both English and non-English speakers over the 1989/90 and 1995 NHSs. Odds ratios for reporting 'had a Pap test within three years' showed significantly lower ORs for women born in the UK, Other countries, Middle East, Greece, and South-East Asia compared with the Australian-born. CONCLUSIONS: This study reveals differentials in reported Pap test behaviour by country-of-birth in Australia and that reported screening rates have improved from the 1989/90 NHS to 1995 NHS in most country-of-birth groups.

Multimodality therapy for patients with clinical Stage I and II malignant mixed Müllerian tumors of the uterus.

BACKGROUND: The role of adjuvant therapy in the management of patients with malignant mixed Müllerian tumors (MMMT) of the uterus has not been defined. The outcome of planned multimodality therapy for patients with apparent early stage disease was assessed. METHODS: A pilot study was performed on 38 patients with clinical Stage I or II MMMTs of the uterus who were offered treatment according to a standard protocol. The protocol consisted of removal of the uterus, fallopian tubes, and ovaries and surgical staging followed by tailored radiation therapy and chemotherapy, consisting of cisplatin and epirubicin. RESULTS: The overall survival was 74% (28 of 38 patients), with a mean duration of follow-up for survivors of 55 months (range, 17-121 months). The mean time to death from disease was 26 months (range, 7-87 months). The survival rate for those patients who completed treatment according to the multimodality protocol was 95% (20 of 21 patients), with a disease free survival rate of 90% (19 of 21 patients). The overall survival of patients who did not receive the recommended treatment protocol for various reasons was 47% (8 of 17 patients). An analysis of survival curves demonstrated that there was a significant survival advantage for those patients who completed the treatment according to the multimodality protocol (P = 0.01). CONCLUSIONS: In this pilot study, patients with clinical Stage I or II MMMTs who underwent surgical staging and aggressive adjuvant radiation and chemotherapy had an excellent survival rate. The results justify a randomized prospective study of this approach.

Cervical screening: population-based comparisons between self-reported survey and registry-derived Pap test rates.

OBJECTIVE: To compare self-reported cervical screening rates, as recorded in the 1998 NSW Health Survey, with registry-based cervical screening rates for NSW for the same period; and to examine factors associated with over-estimates of cervical screening rates by self-report. METHODS: Self-reported cervical screening data was extracted from the 1998 NSW Health Survey, biennial screening rates estimated and compared with biennial cervical screening rates for 1997-98, as recorded on the NSW Pap Test Register (PTR). Rates and differences were related to socio-demographic characteristics of the 17 Area Health Services of NSW. RESULTS: According to the 1998 NSW Health Survey, 74% of women reported having a Pap test during the previous two years. The equivalent rate recorded on the NSW PTR for 1997-98 was 62% (p<0.0001). Among the 17 Area Health Services of NSW these differences ranged from nine to 19 percentage points. Area-specific differences between self-reported and registry-based screening rates were negatively correlated with the registry-based screening rate. Age-specific differences between self-reported and registry-based screening rates were positively correlated with registry-based screening rates. No SES, regional or migrant population characteristics were predictive of differences between recorded and surveyed screening rates. CONCLUSION: Cervical screening rates in NSW derived from self-reported survey data exceed the rate recorded by the NSW Pap Test Register by 12 percentage points (equivalent to 19% inflation). IMPLICATIONS: The data in this paper can be used indicatively where necessary to adjust for over-reporting in cervical cancer screening surveys.

Vulval squamous cell carcinoma arising in chronic hidradenitis suppurativa.

Hidradenitis suppurativa is a chronic inflammatory disease of the sweat glands and hair follicles which is rarely associated with squamous cell carcinoma (SCC). A case of vulval SCC complicating hidradenitis suppurativa is presented. In addition to being the first case to report the association of vulval SCC and hidradenitis suppurativa in the English language literature, it also illustrates the difficulty inherent in distinguishing between invasive SCC and pseudoepitheliomatous hyperplasia on histological examination. The success of wide local excision of the vulval lesion and primary closure without recourse to skin grafts, rotational flaps, or healing by secondary intention is demonstrated.

The role of the clinical psychologist in gynecological cancer.

Gynecological cancers, which account for a substantial proportion of cancer cases in women, can precipitate a wide range of psychological difficulties including affective disturbances, sexual problems, certain somatic symptoms, and family issues. The clinical psychologist has a unique contribution to make in the assessment and treatment of the psychological needs of gynecological cancer patients, while also conducting research and providing training for health professionals regarding the psychological issues associated with gynecological cancer. Although the gynecological cancer setting affords the clinical psychologist multiple personal benefits, strategies must usually be implemented to minimize any negative impact arising from working in an area of considerable psychological stress.

Integrated multimodality therapy for embryonal rhabdomyosarcoma of the lower genital tract in postpubertal females.

Embryonal rhabdomyosarcoma of the female lower genital tract is generally regarded as a neoplasm occurring in childhood, but has also been reported in adults. The philosophy of therapy, largely based on data obtained from pediatric patients, has evolved slowly from ultraradical surgery, without adjuvant therapy, to neoadjuvant chemotherapy followed by less radical surgery and postoperative radiation. We report here three cases of lower genital tract rhabdomyosarcoma in postpubertal females. A failure to observe complete responses from any single treatment modality suggests that for embryonal rhabdomyosarcoma in adult and adolescent women a multimodality approach to therapy is essential.

Cervical cancer in New South Wales women: five-year survival, 1972 to 1991.

We analysed five-year relative survival of 6992 cases of cervical cancer incident between 1972 and 1991 in New South Wales (NSW) women, using data from the population-based state Cancer Registry. Follow-up was to 1992. Survival was determined by record linkage to death certificates. Relative survival was derived from absolute survival of cases with expected survival of age- and period-matched NSW women. Proportional hazard regression analysis was used for multivariate analysis. Relative survival at five years improved from 64 per cent in 1972-1976 to 72 per cent in 1987-1991, although the only significant increase occurred between 1972-1976 and 1977-1981 (64 to 70 per cent). Survival was better for the age groups 0-39 years (RR 0.51) and 40-49 years (RR 0.63) and worse for the elderly (> or = 65 years) (RR 1.47) than for the referent group (50-64 years). Excess mortality was much less for those with localised disease (referent group), than for those with regional spread (RR 3.47) or metastatic cancer (RR 10.5) at diagnosis. For the most recent period (1987-1991), relative five-year survival for localised disease was 82 per cent, for regional spread at diagnosis it was 49 per cent, and for metastatic cancer 21 per cent. When adjusted for confounding, excess mortality was significantly higher for adenocarcinoma (RR 1.16) than for squamous cell carcinoma. Five-year relative survival for cervical cancer in NSW women for the most recent period is similar to that in South Australia, and both compare favourably with international statistics. The lack of improvement of five-year survival for cervical cancer over 15 years since 1977-1981 reinforces the importance of prevention through regular screening by cytology.

Resection of bulky positive lymph nodes in patients with cervical carcinoma.

From January 1987 to April 1992, 34 patients had resection of bulky positive lymph nodes, detected either at the time of radical hysterectomy (n = 23) or by computed tomographic (CT) scan of the pelvis and abdomen prior to radiation therapy for more advanced cervical cancer (n = 11). Following nodal resection, 33 patients received pelvic external beam radiation, 28 received pelvic and para-aortic radiation, and 23 received four cycles of cisplatin chemotherapy. The median number of resected positive nodes was 4, with a range of 1-44. All macroscopic nodal metastases could be resected in each patient and morbidity was acceptably low. Positive nodes were confined to the pelvis in 17 patients, involved the common iliac group in nine patients, and involved the para-aortic area in eight patients. With a mean follow-up of 36 months, 23 patients (67.6%) were alive, of whom 20 were free of disease. For patients having a radical hysterectomy, actuarial 5-year survival was 80% for patients with disease involving pelvic and common iliac lymph nodes, and 48% for those with positive para-aortic nodes. Survival for patients with completely resected bulky pelvic and common iliac nodes was comparable to that for patients with micrometastases. This study suggests that every effort should be made to identify patients with cervical cancer who have bulky positive lymph node metastases, and to remove these nodes surgically prior to radiation therapy.

Tamoxifen in patients with advanced epithelial ovarian cancer.

Tamoxifen was administered to 30 patients with persistent or recurrent epithelial ovarian cancer following initial plantinum-based chemotherapy. Two complete remissions (lasting 41 months and 12 months, respectively) were documented (6.6%), while 10 patients (33.3%) had stabilization of disease for a mean duration of 11.5 months. Tamoxifen was not associated with any significant toxicity and is a reasonable therapeutic option for patients with persistent or recurrent ovarian cancer, although it is only associated with modest activity. This paper reviews our experience with tamoxifen and summarizes the world literature.