“When information is not enough”: A model for understanding BRCA-positive previvors’ information needs regarding hereditary breast and ovarian cancer risk

ObjectiveTo investigate BRCA-positive, unaffected patients’ – referred to as previvors – information needs after testing positive for a deleterious BRCA genetic mutation.Methods25 qualitative interviews were conducted with previvors. Data were analyzed using the constant comparison method of grounded theory.ResultsAnalysis revealed a theoretical model of previvors’ information needs related to the stage of their health journey. Specifically, a four-stage model was developed based on the data: (1) pre-testing information needs, (2) post-testing information needs, (3) pre-management information needs, and (4) post-management information needs. Two recurring dimensions of desired knowledge also emerged within the stages—personal/social knowledge and medical knowledge.ConclusionsWhile previvors may be genetically predisposed to develop cancer, they have not been diagnosed with cancer, and therefore have different information needs than cancer patients and cancer survivors.Practice ImplicationsThis model can serve as a framework for assisting healthcare providers in meeting the specific information needs of cancer previvors.     

How can we improve information for people affected by cancer? A national survey exploring gaps in current information provision,and challenges with accessing cancer information online

ObjectiveDespite improved recognition regarding the importance and association between provision of high quality information for people affected by cancer and improved outcomes and experiences; gaps and unmet needs are still reported. As oncology health information provision increasingly moves online, understanding how service users experience and manage misinformation is important. Determining patient and carer preferences regarding cancer provision is needed to address outstanding gaps.MethodsThis study utilised a purpose-built national cross-sectional survey distributed via social media to assess perspectives regarding cancer information in Australia. Quantitative and qualitative (open text) items assessed respondents’ perspectives regarding current inforation preferences and gaps, and experiences with accessing information online.ResultsA total of 491 people affected by cancer completed the survey. Respondents highlighted a preference for information that better addresses the diversity of cancer experience, and is more timely and responsive to personal situation and care context. Despite increasing attention to health literacy standards, complex medical jargon and terminology remains prevalent. Many respondents have concerns about misinformation, and seek improved mechanisms or skills to assist with determining the trustworthiness and relevance of information found online.ConclusionsSurvey responses identified current gaps in information provision for people affected by cancer. Personalised information in formats which are more flexible, accessible, and responsive to user needs are required.Practice ImplicationsEducation and resources to target and improve digital health literacy and combat health misinformation are needed. Novel solutions co-designed by people affected by cancer will ensure that information is provided in a manner that is relevant, timely, and personalised.     

What do patients with prostate or breast cancer want from an Internet site? A qualitative study of information needs

The study aimed to explore the information needs of cancer patients, to solicit their views of Internet-based health information and to consider whether the DIPEx website would have addressed specific unmet information needs of people with breast or prostate cancer. Focus groups were conducted first to identify information needs. Participants were recruited through four breast and prostate cancer support groups in the UK. Individual interviews, in which participants were shown DIPEx and asked to search for material related to concerns that had been important to them as cancer patients, were conducted after the focus groups. Respondents said their information needs had been complex and changed over time while the information they had been given was often patchy, inconsistent, contradictory and haphazard. Access to practical and experiential information from other patients was highly valued. Those with experience of using the Internet expressed a clear preference for non-commercial sites for health information. Sites attached to recognised centres of excellence such as universities or well-known medical centres were also preferred. Respondents were aware of the possible pitfalls of taking health information from the Internet and often compared information from several sources before believing it.     

How important is peritoneal involvement in rectal cancer? A prospective study of 331 cases

Mitchard J R, Love S B, Baxter K J & Shepherd N A
(2010) Histopathology 57 , 671–679
How important is peritoneal involvement in rectal cancer? A prospective study of 331 cases Background and aims: The importance of circumferential resection margin involvement in predicting locoregional recurrence and death from rectal cancer is well known. However, it is well accepted that cases of rectal carcinoma recur when this surgical margin is not compromised. The aim of this study was to analyse the influence of peritoneal involvement, among other clinicopathological variables, on locoregional recurrence and overall prognosis in an unselected prospective series of rectal cancer resections. Methods and results: This unselected prospective study assessed 331 rectal carcinoma cases from a colorectal cancer study that recruited more than 1000 cases. Meticulous pathological examination was performed by one pathologist, with particular attention paid to the peritoneal surface. All clinicopathological variables were entered into a database with comprehensive clinical follow‐up. Peritoneal involvement was a significant factor in prognosis on univariate analysis but not on multivariate analysis. However, in analysing the causes of locoregional recurrence specifically, it may have been a factor in causing this in up to half the cases. Conclusions: This study adds to the small amount of literature data on the potential importance of peritoneal involvement in predicting locoregional recurrence and overall prognosis, especially in upper rectal cancer.     

Vitamin supplementation and breast cancer: is homeostasis a factor?

Recent observations by several research groups on many thousands of women have yielded the disappointing view that mega-dose vitamin supplementation does not provide significant protection against breast cancer. This is a review of the pertinent literature with a goal of identifying testable hypotheses that might explain the epidemiology and be helpful in designing subsequent evaluations. In one hypothesis presented, the vitamin content of peripheral cells that protect breast epithelium is not markedly affected by supplementation. In the second hypothesis the metabolic status (redox state) of epithelial cells is more important than the absolute level (reduced plus oxidized) of each antioxidant. In either case, extremes in diet fail to alter inherent homeostatic mechanisms.     

Nuclear morphology in breast cancer: is pleomorphism an illusion?

Nuclear pleomorphism is an underlying theme of cancer histology. Any medical practitioner, not just the pathologist, would have at one time or another in a Pathology practical class, looked at histopathology slides and convinced himself or herself that cancer cells indeed looked more variable in size and shape than nontumorigenic cells. However, data from our nuclear morphometric analysis of cells in breast cancer and adjacent benign tissues appears to suggest that the larger size of the cancer cell nuclei could make any change in nuclear shape and size more noticeable and apparent than their benign counterparts. We hypothesize that the phenomenon of nuclear pleomorphism is due partly to observational subjectivity.     

Deciding on breast cancer risk reduction: The role of counseling in individual decision-making – A qualitative study

ObjectivesThe presentation of risks and benefits in clinical practice is common particularly in situations in which treatment recommendations involve trade-offs. The treatment of breast cancer risk with selective estrogen receptor modulators (SERMs) is such a decision. We investigated the influence of health care provider (HCP) counseling on women’s decision-making.MethodsThirty breast cancer risk counseling sessions were recorded from April 2012–August 2013 at a comprehensive cancer center and at a safety-net, community hospital in the US. Participating women and HCPs were interviewed. A cross-case synthesis was used for analysis.ResultsOf 30 participants 21 received a SERM-recommendation, 11 decided to take SERMs. Counseling impacted decision-making, but did not determine it. Three categories emerged: 1.) ability to change the decision anytime, 2.) perceptions on medications, and 3.) proximity of cancer.ConclusionDecision-making under conditions of a risk diagnosis such as increased breast cancer risk is a continuous process in which risk information is transformed into practical and experiential considerations.Practice implicationsIndividuals’ health care decision-making is only marginally dependent on the interactions in the clinic. Accepting patients’ experiences and beliefs in their own right and letting them guide the discussion may be important for a satisfying decision-making process.     

Microinvasive carcinoma of the breast: can it be diagnosed reliably and is it clinically significant?

Deciding whether in-situ breast carcinoma is associated with microinvasion is a common problem. Histological features resembling invasion can be simulated by in-situ carcinoma distorted by inflammatory and reparative changes. Having expended the effort to diagnose genuine microinvasion, just how useful is this diagnosis in planning further treatment and follow-up? In the following articles, Hoda et al. comment on the utility of immunohistochemistry in resolving uncertainty about the presence of microinvasion, and Ellis et al. critically appraise the definition of microinvasion and its clinical significance.     

How can information extraction ease formalizing treatment processes in clinical practice guidelines?: A method and its evaluation

OBJECTIVE: Formalizing clinical practice guidelines (CPGs) for a subsequent computer-supported processing is a challenging, but burdensome and time-consuming task. Existing methods and tools to support this task demand detailed medical knowledge, knowledge about the formal representations, and a manual modeling. Furthermore, formalized guideline documents mostly fall far short in terms of readability and understandability for the human domain modeler. METHODS AND MATERIAL: We propose a new multi-step approach using information extraction methods to support the human modeler by both automating parts of the modeling process and making the modeling process traceable and comprehensible. This paper addresses the first steps to obtain a representation containing processes which is independent of the final guideline representation language. RESULTS: We have developed and evaluated several heuristics without the need to apply natural language understanding and implemented them in a framework to apply them to several guidelines from the medical subject of otolaryngology. Findings in the evaluation indicate that using semi-automatic, step-wise information extraction methods are a valuable instrument to formalize CPGs. CONCLUSION: Our evaluation shows that a heuristic-based approach can achieve good results, especially for guidelines with a major portion of semi-structured text. It can be applied to guidelines irrespective to the final guideline representation format.     

Patients’ challenges,competencies, and perceived support in dealing with information needs – A qualitative analysis in patients with breast and gynecological cancer

ObjectivesThis study aimed to investigate challenges, competencies, and support in breast and gynecological cancer patients when dealing with information needs and how health literacy as an interplay of these factors might be improved.MethodsSemi-structured interviews were conducted with patients in acute care (n = 19), undergoing rehabilitation (n = 20) or attending self-help groups (n = 16). Interviews were analyzed using content analysis.ResultsChallenges: gain information according to own needs, internet as information source, information evaluation and decisions, doctor-patient communication, situationally limited information processing, difficult access to information. Competencies: self-regulation of information needs, media and social competencies, communication skills in the doctor-patient conversation, internet competencies, self-directed decisions according to own needs, interest/self-efficacy, previous knowledge, trust in the doctor. Support: by professionals (e.g., patient-centered communication), relatives (e.g., support during consultations), peers (e.g., exchange), facilities (e.g., clinics).ConclusionsOur findings provide insight into challenges and competencies relevant to patients’ health literacy and the influence of support. The individuality of the interplay highlights the relevance of an active patient role and patient-centered care.Practice implicationsPatients’ health literacy should be improved in (psycho)oncological work by both reducing challenges (e.g., by communication skills training, involving relatives) and promoting competencies (e.g., by needs- and competence-oriented information offers).     

Postmenopausal hormone therapy and breast cancer: What is the problem?

Observational studies provide evidence that breast cancer risk is increased with long-term oral use of postmenopausal estrogen replacement therapy (ET). Various large cohort studies have shown that the addition of a progestogen in combined hormone replacement therapy (EPT) increases this risk further. Prospective, randomized controlled trials have confirmed this for the continuous combined regimen. So, why not tell our patients, “Stop using ET and EPT, it is dangerous to your health!”? The answer is: there are too many problems to allow such an oversimplified, definite statement. What is the problem? There is more than one!The problems are as follows:

• •There are many observational studies, but these are not consistent in their results.
• •Relative risk increases, if any, are small and thus often statistically non-significant.
• •Observational studies have inherent biases that cannot be corrected for; therefore evidence should come from randomized clinical trials (RCTs).
• •There are no RCTs that provide evidence as to the breast cancer risk with ET, compared to EPT in the same study population.
• •In the three large RCTs available, the populations studied are: not representative, too old and without climacteric complaints, and therefore lacking any indication for postmenopausal hormone therapy (HT).
• •The data obtained thus far do not apply to non-oral routes, neglect the difference in progestogens, and do not address tibolone, a valuable alternative to classical HT in Europe.
• •And finally, are these epidemiological findings biologically plausible? Can estrogens cause breast cancer and why then does the Women's Health Initiative (WHI) RCT not find this? And how can the addition of a progestogen increase the ET risk further as progestogens are pro-apoptotic and down-regulate estrogen receptors as well as local estrogen biosynthesis?

In conclusion, we have a problem as we cannot formulate any general advice that holds for the majority of European postmenopausal women due to lack of consistency, lack of biological plausibility, and lack of relevance of randomized clinical trial data to our daily practical work.So, we have a problem and not a firm basis for undisputable statements.     

Can metabolomics in addition to genomics add to prognostic and predictive information in breast cancer?

Genomic data from breast cancers provide additional prognostic and predictive information that is beginning to be used for patient management. The question arises whether additional information derived from other 'omic' approaches such as metabolomics can provide additional information. In an article published this month in BMC Cancer, Borgan et al. add metabolomic information to genomic measures in breast tumours and demonstrate, for the first time, that it may be possible to further define subgroups of patients which could be of value clinically.     

When is acute persistent cough in school-age children and adults whooping cough?: A prospective case series study

Background

Pertussis is a vaccine modified disease in most age groups and hence subtle in its presentation. Current diagnostic approaches require relatively invasive sampling.

Aim

To determine the incidence of B. pertussis infection among people aged 5–49 years identified in primary care with acute persistent cough using an oral fluid based diagnostic test.

Design and setting

Active surveillance of acute persistent cough of 2 weeks duration or greater was established in Auckland, New Zealand from May to October 2011. The 15 participating primary care practices provided care for a socioeconomically diverse population.

Method

Recent B. pertussis infection was determined by measurement of IgG antibodies to pertussis toxin (PT) in an oral fluid sample. An IgG antibody titre to PT of ≥70 arbitrary units defined recent infection. Participants reported symptoms at presentation and kept a cough diary.

Results

A total of 226 participants were enrolled: 70 (31%) were children (5–16 years) and 156 (69%) were adults (17–49 years). Oral fluid samples were obtained from 225 participants. Ten per cent (23/225) had recent B. pertussis infection including a larger proportion of children than adults (17% versus 7%, P = 0.003). Neither cough duration nor any individual symptom discriminated between those with and without recent B. pertussis infection.

Conclusion

Pertussis is a frequent cause of acute persistent cough presenting to primary care. Clinical differentiation of pertussis from other causes of acute persistent cough is difficult. An oral fluid based diagnostic test, which is less invasive than other diagnostic approaches, has high acceptability in primary care.     

Training physicians in shared decision-making-Who can be reached and what is achieved?

Objective

To report on experiences with a general shared decision-making (SDM) physician training program offered to physicians throughout Germany.

Methods

This study enrolled 150 physicians in an 8-h SDM training program. Physicians were assessed with standardized instruments before and after training. Main variables of interest were physician professional attributes, personality characteristics, attitudes, measures of training success (quality rating, knowledge, competency ratings), and variables associated with training success.

Results

The SDM training obtained positive quality ratings, led to an amelioration in an objective SDM knowledge test (p < .001), and highly improved physicians’ confidence in their SDM competencies (p < 0.001). It attracted experienced, middle-aged (45 years), male and female (46%) physicians, mostly office-based (2/3) general practitioners and internists (2/3). Most physicians (94%) reported positive attitudes towards SDM. They were securely attached (63%) with predominant social career choice motives (46%). Physicians with personality characteristics clashing with the SDM concept benefited mostly from the training.

Conclusion

A voluntary SDM training program is attractive to practicing physicians and effective in increasing SDM-related confidence and knowledge.

Practice implications

Even physicians who are highly motivated to use SDM can improve their skills and benefit from SDM training. The dissemination of SDM training programs should be encouraged.     

Her-2/neu-testing in breast cancer: is the immunocytochemistry competent?

According to ASCO/CAP guidelines, there are two recommended methods for Her2/neu-testing in breast cancer patients such as immunohistochemistry and fluorescence in situ hybridization. This paper analyses results of alternative immunocytochemical method for Her2/neu detection and its diagnostic pitfalls.