Why do hospital mastectomy rates vary? Differences in the decision-making experiences of women with breast cancer

Background:

Hospital mastectomy rates vary. This study explores the relationship between mastectomy rates and breast cancer patients'' consultation and decision-making experiences with specialist clinicians.

Methods:

Qualitative semi-structured interviews were conducted with 65 patients from three purposively selected breast units from a single UK region. Patients provided with a choice of breast cancer surgery (breast conservation therapy (BCT) or mastectomy) were purposively recruited from high, medium and low case-mix-adjusted mastectomy rate units.

Results:

Low mastectomy rate unit patients'' consultation and decision-making experiences were markedly different to those of the medium and high mastectomy rate breast units. Treatment variation was associated with patients'' perception of the most reassuring and least disruptive treatment; the content and style of information provision (equipoise or directed); level of patient participation in decision making; the time and process of decision making and patient autonomy in decision making. The provision of more comprehensive less directive information and greater autonomy, time and support of independent decision making were associated with a lower uptake of BCT.

Conclusion:

Variation in hospital mastectomy rates was associated with differences in the consultation and decision-making experiences of breast cancer patients. Higher mastectomy rates were associated with the facilitation of more informed autonomous patient decision making.     

Exploring inequalities in access to care and the provision of choice to women seeking breast reconstruction surgery: a qualitative study

Background:

Breast reconstruction (BR) may improve psychosocial and cosmetic outcomes after mastectomy for breast cancer but currently, few women opt for surgery. Reasons for this are unclear. The aim of this qualitative study was to explore access to care and the provision of procedure choice to women seeking reconstructive surgery.

Methods:

Semi-structured interviews with a purposive sample of patients who had undergone BR and professionals providing specialist care explored participants'' experiences of information provision before BR. Interviews were transcribed verbatim and analysed using the constant comparative technique of grounded theory. Sampling, data collection and analysis were performed concurrently and iteratively until data saturation was achieved.

Results:

Both patients and professionals expressed concerns about the provision of adequate procedure choice and access to care. Lack of information and/or time, involvement in decision making and issues relating to the evolution and organisation of reconstructive services, emerged as potential explanations for the inequalities seen. Interventions to improve cross-speciality collaboration were proposed to address these issues.

Conclusion:

Inequalities in the provision of choice in BR exist, which may be explained by a lack of integration between surgical specialities. Pathway restructuring, service reorganisation and standardisation of training may enhance cross-speciality collaboration and improve the patient experience.     

The impact of supportive nursing care on the needs of men with prostate cancer: a study across seven European countries

Background:

Prostate cancer is for many men a chronic disease with a long life expectancy after treatment. The impact of prostate cancer therapy on men has been well defined, however, explanation of the consequences of cancer treatment has not been modelled against the wider variables of long-term health-care provision. The aim of this study was to explore the parameters of unmet supportive care needs in men with prostate cancer in relation to the experience of nursing care.

Methods:

A survey was conducted among a volunteer sample of 1001 men with prostate cancer living in seven European countries.

Results:

At the time of the survey, 81% of the men had some unmet supportive care needs including psychological, sexual and health system and information needs. Logistic regression indicated that lack of post-treatment nursing care significantly predicted unmet need. Critically, men''s contact with nurses and/or receipt of advice and support from nurses, for several different aspects of nursing care significantly had an impact on men''s outcomes.

Conclusion:

Unmet need is related not only to disease and treatment factors but is also associated with the supportive care men received. Imperative to improving men''s treatment outcomes is to also consider the access to nursing and the components of supportive care provided, especially after therapy.     

Implementing a Cancer Fast-track Programme between primary and specialised care in Catalonia (Spain): a mixed methods study

Background:

The Cancer Fast-track Programme''s aim was to reduce the time that elapsed between well-founded suspicion of breast, colorectal and lung cancer and the start of initial treatment in Catalonia (Spain). We sought to analyse its implementation and overall effectiveness.

Methods:

A quantitative analysis of the programme was performed using data generated by the hospitals on the basis of seven fast-track monitoring indicators for the period 2006–2009. In addition, we conducted a qualitative study, based on 83 semistructured interviews with primary and specialised health professionals and health administrators, to obtain their perception of the programme''s implementation.

Results:

About half of all new patients with breast, lung or colorectal cancer were diagnosed via the fast track, though the cancer detection rate declined across the period. Mean time from detection of suspected cancer in primary care to start of initial treatment was 32 days for breast, 30 for colorectal and 37 for lung cancer (2009). Professionals associated with the implementation of the programme showed that general practitioners faced with suspicion of cancer had changed their conduct with the aim of preventing lags. Furthermore, hospitals were found to have pursued three specific implementation strategies (top-down, consensus-based and participatory), which made for the cohesion and sustainability of the circuits.

Conclusion:

The programme has contributed to speeding up diagnostic assessment and treatment of patients with suspicion of cancer, and to clarifying the patient pathway between primary and specialised care.     

Does the ‘Liverpool Care Pathway' facilitate an improvement in quality of care for dying cancer patients?

Background:

The Liverpool Care Pathway for the Dying Patient (LCP) aims to transfer hospice principles of care for dying patients to other health-care sectors. This post-bereavement survey explored the LCP''s effectiveness in improving quality of care for cancer patients.

Methods:

Postal self-completion questionnaires were sent to 778 next-of-kin to consecutive deceased patients who had died an ‘expected'' cancer death in a hospice and acute tertiary hospital.

Results:

Following exclusions (n=53), 255 of the 725 next-of-kin agreed to participate (35.2% response rate). Overall hospice participants reported the best quality of care, and hospital participants, for whom care was not supported by the LCP, reported the worst quality of care. Multivariate analysis showed the hospice was an independent predictor for patients being treated with dignity (OR 8.46) and receiving adequate family support (OR 7.18) (P<0.0001). Care supported by the LCP and the hospital specialist palliative care team were both associated with good family support, but neither was an independent predictor.

Conclusions:

From the bereaved relatives'' perspective, within the hospital, the LCP is effective in improving specific aspects of care, such as symptom control for dying patients. Further improvement is required, however, to attain the hospice standard of care.     

The needs of patients with advanced, incurable cancer

Background:

Limited research has investigated the specific needs of patients with advanced incurable cancer. The aim of this study was to describe the prevalence of perceived needs among this population.

Methods:

Medical specialists from two regions in New South Wales, Australia, identified patients with advanced, incurable cancer, who were estimated to have a life expectancy of <2 years and were not receiving formal palliative care. Of the 418 eligible patients, 246 (59%) consented to participate. Consenting patients completed the Needs Assessment for Advanced Cancer Patients questionnaire, which has demonstrable validity and reliability. Patients'' perceived needs were assessed across the seven domains of the questionnaire: psychological, daily living, medical communication and information, symptom related, social, spiritual and financial needs.

Results:

Patients identified the greatest areas of need in relation to psychological and medical communication/information domains. Patients'' specific needs were highest in dealing with a lack of energy and tiredness, coping with fears about the cancer spreading, and coping with frustration at not being able to do the things they used to do.

Conclusion:

This study indicates that patients with advanced, incurable cancer have high levels of unmet needs, especially in relation to the areas of psychological and medical communication/information needs. The data have the potential to guide the development of interventions aimed at meeting the current unmet needs of patients with advanced, incurable cancer.     

Follow-up care for cancer survivors: views of the younger adult

Background:

Since the launch of the National Cancer Survivorship Initiative, there has been a surge of interest surrounding the value and organisation of long-term follow-up care after cancer treatment. We report the views of 309 adult cancer survivors (aged 18–45 years) on provision of follow-up and preferences for care.

Methods:

A total of 207 survivors completed questionnaires before and after routine consultant-led follow-up appointments and 102 were recruited by post. Measures of health status (including late effects, perceived vulnerability to late effects and quality of life), reasons for attending follow-up (clinical and supportive), issues to be discussed at follow-up and preferences for different models of care were assessed.

Results:

In all, 59% of the survivors reported experiencing one or more cancer-related health problems. Survivors rated clinical reasons for attending follow-up more highly than supportive reasons (P<0.001), although nutritional advice and counselling were considered useful (60 and 47%, respectively). Those still receiving scheduled follow-up appointments did not discuss the range of issues intended with ‘late effects'' and ‘fertility'', which were particularly under-discussed. Hospital rather than GP follow-up was more highly rated.

Conclusion:

Survivors value the clinical reassurance currently provided by consultant-led care. However, supportive needs are not systematically addressed. Multi-disciplinary services are recommended to meet supportive needs in addition to clinical care.     

Measures of promptness of cancer diagnosis in primary care: secondary analysis of national audit data on patients with 18 common and rarer cancers

Background:

Evidence is needed about the promptness of cancer diagnosis and associations between its measures.

Methods:

We analysed data from the National Audit of Cancer Diagnosis in Primary Care 2009–10 exploring the association between the interval from first symptomatic presentation to specialist referral (the primary care interval, or ‘interval'' hereafter) and the number of pre-referral consultations.

Results:

Among 13 035 patients with any of 18 different cancers, most (82%) were referred after 1 (58%) or 2 (25%) consultations (median intervals 0 and 15 days, respectively) while 9%, 4% and 5% patients required 3, 4 or 5+ consultations (median intervals 34, 47 and 97 days, respectively) (Spearman''s r=0.70). The association was at least moderate for any cancer (Spearman''s r range: 0.55 (prostate)−0.77 (brain)). Patients with cancers with a higher proportion of three or more pre-referral consultations typically also had longer median intervals (e.g., multiple myeloma) and vice versa (e.g., breast cancer).

Conclusion:

The number of pre-referral consultations has construct validity as a measure of the primary care interval. Developing interventions to reduce the number of pre-referral consultations can help improve the timeliness of cancer diagnosis, and constitutes a priority for early diagnosis initiatives and research.     

Breast cancer incidence and mortality in a transitioning Chinese population: current and future trends

Background:

Projections of future trends in cancer incidence and mortality are important for public health planning.

Methods:

By using 1976–2010 data in Hong Kong, we fitted Poisson age-period-cohort models and made projections for future breast cancer incidence and mortality to 2025.

Results:

Age-standardised breast cancer incidence (/mortality) is projected to increase (/decline) from 56.7 (/9.3) in 2011–2015 to 62.5 (/8.6) per 100 000 women in 2021–2025.

Conclusions:

The incidence pattern may relate to Hong Kong''s socio-economic developmental history, while falling mortality trends are, most likely, due to improvements in survival from treatment advancement and improved health service delivery.     

Patterns of metastasis in women with metachronous contralateral breast cancer

Background:

The understanding of metastatic patterns after metachronous contralateral breast cancer (CBC) may help determine the biological nature of CBC.

Methods:

A cohort of 8478 women with breast cancer treated at Guy''s and St Thomas'' NHS Foundation Trust between 1975 and 2006 were studied. Organ-specific 5-year cumulative incidence and incidence rate ratios were assessed for women diagnosed with unilateral breast cancer (UBC), CBC within 5 years and CBC more than 5 years of the initial diagnosis.

Results:

Women diagnosed with CBC within 5 years had a higher incidence of metastases in all organs compared with UBC. Women with a short interval time to CBC developed metastasis more rapidly and were more likely to develop visceral and distant cutaneous metastases compared with bone metastasis.

Conclusion:

These findings explain poor prognosis of women with early occurring CBC and suggest that some of these CBCs are indicators of aggressive and/or systemic disease.     

HPV vaccination among ethnic minorities in the UK: knowledge, acceptability and attitudes

Background:

Human papillomavirus (HPV) vaccination offers a unique opportunity for the primary prevention of cervical cancer. Studies suggest that knowledge and attitudes about the vaccine are likely to influence uptake. One limitation of most studies assessing HPV vaccine knowledge, attitudes and acceptability is their under representation of ethnic minorities. It is important to ensure that our understanding of HPV knowledge and attitudes include all ethnic groups in the UK. This article reviews research that has considered knowledge, acceptability and attitudes about HPV and the HPV vaccine among ethnic minorities in the UK.

Methods:

Articles in Medline, CINAHL and PsycINFO (January 2000–March 2010) were searched.

Results:

A total of 17 UK-based papers examined knowledge, attitudes or acceptability related to HPV vaccination in the ‘lay'' population (parents, adolescents or the general population as opposed to health professionals) and reported findings by ethnicity.

Conclusion:

Findings seem to suggest lower awareness of HPV and lower acceptability of the vaccination, which could be important if they are reflected in uptake. More research is needed with ethnic minority groups, particularly in the context of the vaccination programme.     

What is the lifetime risk of developing cancer?: the effect of adjusting for multiple primaries

Background:

The ‘lifetime risk'' of cancer is generally estimated by combining current incidence rates with current all-cause mortality (‘current probability'' method) rather than by describing the experience of a birth cohort. As individuals may get more than one type of cancer, what is generally estimated is the average (mean) number of cancers over a lifetime. This is not the same as the probability of getting cancer.

Methods:

We describe a method for estimating lifetime risk that corrects for the inclusion of multiple primary cancers in the incidence rates routinely published by cancer registries. The new method applies cancer incidence rates to the estimated probability of being alive without a previous cancer. The new method is illustrated using data from the Scottish Cancer Registry and is compared with ‘gold-standard'' estimates that use (unpublished) data on first primaries.

Results:

The effect of this correction is to make the estimated ‘lifetime risk'' smaller. The new estimates are extremely similar to those obtained using incidence based on first primaries. The usual ‘current probability'' method considerably overestimates the lifetime risk of all cancers combined, although the correction for any single cancer site is minimal.

Conclusion:

Estimation of the lifetime risk of cancer should either be based on first primaries or should use the new method.     

A direct comparison of CellSearch and ISET for circulating tumour-cell detection in patients with metastatic carcinomas

Background:

Circulating tumour cells (CTCs) can provide information on patient prognosis and treatment efficacy. However, there is no universal method to detect CTC currently available. Here, we compared the performance of two CTC detection systems based on the expression of the EpCAM antigen (CellSearch assay) or on cell size (ISET assay).

Methods:

Circulating tumour cells were enumerated in 60 patients with metastatic carcinomas of breast, prostate and lung origins using CellSearch according to the manufacturer''s protocol and ISET by studying cytomorphology and immunolabelling with anti-cytokeratin or lineage-specific antibodies.

Results:

Concordant results were obtained in 55% (11 out of 20) of the patients with breast cancer, in 60% (12 out of 20) of the patients with prostate cancer and in only 20% (4 out of 20) of lung cancer patients.

Conclusion:

Our results highlight important discrepancies between the numbers of CTC enumerated by both techniques. These differences depend mostly on the tumour type. These results suggest that technologies limiting CTC capture to EpCAM-positive cells, may present important limitations, especially in patients with metastatic lung carcinoma.     

A trial of consent procedures for future research with clinically derived biological samples

Background:

The aims of this study were to determine which consent procedure patients prefer for use of stored tissue for research purposes and what the effects of consent procedures on actual consenting behaviour are.

Methods:

We offered 264 cancer patients three different consent procedures: ‘one-time general consent'' (asked written informed consent), ‘opt-out plus'' (had the opportunity to opt out by a form), or the standard hospital procedure (control group). The two intervention groups received a specific leaflet about research with residual tissue and verbal information. The control group only received a general hospital leaflet including opt-out information, which is the procedure currently in use. Subsequently, all patients received a questionnaire to examine their preferences for consent procedures.

Results:

In all, 99% of patients consented to research with their residual tissue. In the ‘one-time consent'' group 85% sent back their consent form. Patients preferred ‘opt-out plus'' (43%) above ‘one-time consent'' (34%) or ‘opt-out'' (16%), whereas 8% indicated that they did not need to receive information about research with residual tissues or be given the opportunity to make a choice.

Conclusions:

The ‘opt-out plus'' procedure, which places fewer demands on administrative resources than ‘one-time consent'', can also address the information needs of patients.     

Are women ready for the new cervical screening protocol in England? A systematic review and qualitative synthesis of views about human papillomavirus testing

Background:

A new protocol for human papillomavirus (HPV) testing within the UK cervical screening programme commenced in April 2011, creating new patient experiences. This is the first review to synthesise a substantial body of international evidence of women''s information needs, views and preferences regarding HPV testing. We aimed to inform the development of educational materials to promote informed choice, reduce anxiety and improve disease control.

Methods:

We searched 12 bibliographic databases. Two reviewers independently screened papers and assessed study quality; disagreements were resolved by discussion. Results were extracted verbatim and authors'' findings treated as primary data. Studies were synthesised collaboratively using framework methods.

Results:

We synthesised findings from 17 studies. Women had overwhelmingly negative concerns; an HPV diagnosis was daunting, had associated problems of disclosure of a sexually transmitted infection (STI), impacted on relationships and provoked fear of stigmatisation. Nevertheless, many thought HPV testing could be a preferable alternative to repeat cytology. Knowledge was poor; women struggled to interpret limited information in the context of existing knowledge about STIs and cervical cancer.

Conclusion:

Women are likely to be poorly informed, have limited understanding and many unanswered questions. This could increase anxiety and reduce ability to make informed choices, presenting a substantial challenge for those who design and provide information.     

Survivorship care plans in cancer: a systematic review of care plan outcomes

Background:

Eight years after the Institute of Medicine recommended survivorship care plans (SCPs) for all cancer survivors, this study systematically reviewed the evidence for their use.

Methods:

Studies evaluating outcomes after implementation of SCPs for cancer survivors were identified by searching databases (MEDLINE, EMBASE and Cochrane). Data were extracted and summarised.

Results:

Ten prospective studies (2286 survivors) met inclusion criteria (5 randomised controlled trials (RCTs)). Study populations included survivors of breast, gynaecological, colorectal and childhood cancer. Several models of SCP were evaluated (paper based/on-line, oncologist/nurse/primary-care physician-delivered and different templates). No significant effect of SCPs was found on survivor distress, satisfaction with care, cancer-care coordination or oncological outcomes in RCTs. Breast cancer survivors with SCPs were better able to correctly identify the clinician responsible for their follow-up care. One study suggested a positive impact on reducing unmet needs. Levels of survivor satisfaction with, and self-reported understanding of, their SCP were very high. Feasibility was raised by health professionals as a significant barrier, as SCPs took 1–4 h of their time to develop.

Conclusions:

Emerging evidence shows very few measurable benefits of SCPs. Survivors reported high levels of satisfaction with SCPs. Resource issues were identified as a significant barrier to implementation.     

Multidisciplinary decisions in breast cancer: does the patient receive what the team has recommended?

Background:

A multidisciplinary team (MDT) approach to breast cancer management is the gold standard. The aim is to evaluate MDT decision making in a modern breast unit.

Methods:

All referrals to the breast MDT where breast cancer was diagnosed from 1 July 2009 to 30 June 2011 were included. Multidisciplinary team decisions were compared with subsequent patient management and classified as concordant or discordant.

Results:

Over the study period, there were 3230 MDT decisions relating to 705 patients. Overall, 91.5% (2956 out of 3230) of decisions were concordant, 4.5% (146 out of 3230), were discordant and 4% (128 out of 3230) had no MDT decision. Of 146 discordant decisions, 26 (17.8%) were considered ‘unjustifiable'' as there was no additional information available after the MDT to account for the change in management. The remaining 120 discordant MDT decisions were considered ‘justifiable'', as management was altered due to patient choice (n=61), additional information available after MDT (n=54) or MDT error (n=5).

Conclusion:

The vast majority of MDT decisions are implemented. Management alteration was most often due to patient choice or additional information available after the MDT. A minority of management alterations were ‘unjustifiable'' and the authors recommend that any patient whose treatment is subsequently changed should have MDT rediscussion prior to treatment.     

Cancer spectrum and frequency among children with Noonan,Costello, and cardio-facio-cutaneous syndromes

Background:

Somatic mutations affecting components of the Ras-MAPK pathway are a common feature of cancer, whereas germline Ras pathway mutations cause developmental disorders including Noonan, Costello, and cardio-facio-cutaneous syndromes. These ‘RASopathies'' also represent cancer-prone syndromes, but the quantitative cancer risks remain unknown.

Methods:

We investigated the occurrence of childhood cancer including benign and malignant tumours of the central nervous system in a group of 735 individuals with germline mutations in Ras signalling pathway genes by matching their information with the German Childhood Cancer Registry.

Results:

We observed 12 cases of cancer in the entire RASopathy cohort vs 1.12 expected (based on German population-based incidence rates). This corresponds to a 10.5-fold increased risk of all childhood cancers combined (standardised incidence ratio (SIR)=10.5, 95% confidence interval=5.4–18.3). The specific cancers included juvenile myelomonocytic leukaemia=4; brain tumour=3; acute lymphoblastic leukaemia=2; rhabdomyosarcoma=2; and neuroblastoma=1. The childhood cancer SIR in Noonan syndrome patients was 8.1, whereas that for Costello syndrome patients was 42.4.

Conclusions:

These data comprise the first quantitative evidence documenting that the germline mutations in Ras signalling pathway genes are associated with increased risks of both childhood leukaemia and solid tumours.     

‘Being there' for women with metastatic breast cancer: a pan-European patient survey

Background:

Understanding their experiences of diagnosis is integral to improving the quality of care for women living with advanced/metastatic breast cancer.

Methods:

A survey, initiated in March 2011, was conducted in two stages. First, the views of 47 breast cancer-related patient groups in eight European countries were sought on standards of breast cancer care and unmet needs of patients. Findings were used to develop a patient-centric survey to capture personal experiences of advanced breast cancer to determine insights into the ‘trade-off'' between extending overall survival and side effects associated with its treatment. The second online survey was open to women with locally advanced or metastatic breast cancer, or their carers, and responders were recruited through local patient groups. Data were collected via anonymous local language questionnaires.

Results:

The online stage II survey received a total of 230 responses from 17 European countries: 94% of respondents had locally advanced or metastatic breast cancer and 6% were adult carers. Although the overall experience of care was generally good/excellent (77%), gaps were still perceived in terms of treatment choice and information provision. Treatment choice for patients was felt to be lacking by 32% of responders. In addition, 68% of those who responded would have liked more information about future medical treatments and research, with 57% wishing to receive this information from their oncologist. Two-thirds (66%) of women with advanced breast cancer, or their carers, believed life-extending treatment to be important so that they can spend more time with family and friends, and 67% said that the treatment was worthwhile, despite potential associated side effects.

Conclusion:

These findings show a continuing need to provide women with advanced breast cancer with better information and emphasise the importance that these patients often place on prolonging survival.     

MicroRNA-based molecular classification of non-BRCA1/2 hereditary breast tumours

Background:

Hereditary breast cancer comprises 5–10% of all breast cancers. Mutations in two high-risk susceptibility genes, BRCA1 and BRCA2, along with rare intermediate-risk genes and common low-penetrance alleles identified, altogether explain no more than 45% of the high-risk breast cancer families, although the majority of cases are unaccounted for and are designated as BRCAX tumours. Micro RNAs have called great attention for classification of different cancer types and have been implicated in a range of important biological processes and are deregulated in cancer pathogenesis.

Methods:

Here we have performed an exploratory hypothesis-generating study of miRNA expression profiles in a large series of 66 primary hereditary breast tumours by microarray analysis.

Results:

Unsupervised clustering analysis of miRNA molecular profiles revealed distinct subgroups of BRCAX tumours, ‘normal-like'' BRCAX-A, ‘proliferative'' BRCAX-B, ‘BRCA1/2-like'' BRCAX-C and ‘undefined'' BRCAX-D subgroup. These findings introduce a new insight in the biology of hereditary breast cancer, defining specific BRCAX subgroups, which could help in the search for novel susceptibility pathways in hereditary breast cancer.

Conclusion:

Our data demonstrate that BRCAX hereditary breast tumours can be sub-classified into four previously unknown homogenous groups characterised by specific miRNA expression signatures and histopathological features.