“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.     

Tailoring the amount of treatment information to cancer patients’ and survivors’ preferences: Effects on patient-reported outcomes

ObjectivesTailoring medical information to cancer patients’ needs is recommended, but there is little guidance on how to tailor, and limited research exists about its effects. Tailoring to the amount of preferred information may be easily implementable in clinic and is tested here.MethodsA video-vignette experiment was used to systematically vary video patients’ information preferences (limited/extensive) and amount of provided information (additional/no additional). N = 253 cancer patients/survivors evaluated these video-recorded consultations, serving as analogue patients (APs), and completed outcome measures.ResultsTailoring information to video patients’ preferences had no effect on APs’ evaluation of the consultation (satisfaction, trust). Yet, there was a main effect of APs’ own information preferences: Those preferring extensive information recalled (MΔ = 5.8%) and recognized (MΔ = 3.5%) more information than those preferring limited information. Moreover, information provision mattered among APs who preferred limited information: They recognized even less if provided with extensive information.ConclusionsTailoring to the amount of video patient’s information preferences did not affect APs’ evaluation of the consultation (satisfaction, trust), while APs’ personal information preferences determined their recall and recognition of medical information.Practice implicationsInformation preferences should be assessed and tailored to in clinical practice. Overwhelming patients/survivors, who prefer limited information, should be prevented.     

A systematic review of parents’ experiences and information needs related to their child’s urinary tract infection

Objective

As a first step toward the development of an animated video and infographic to increase parents’ knowledge of pediatric urinary tract infections (UTIs), we conducted a systematic review of their experiences and information needs.

‘You have a swelling’: The language of cancer diagnosis and implications for cancer management in Kenya

ObjectiveTo examine the ramifications of language as a vehicle of communication in the Kenyan healthcare system.Methods(1) A review of literature search on language access and health care in Kenya, using Scopus, Web of Science, Ebscohost, ProQuest and Google Scholar electronic databases. (2) Two illustrative case studies from a Nairobi based qualitative research project on family cancer caregivers’ experiences.ResultsEvidence from the case studies shows that language barriers may hinder understanding of cancer diagnoses and consequently, the nature of interventions sought by family members as informal caregivers of cancer patients.ConclusionFindings demonstrate the significance of language in understanding cancer diagnosis as a basis for treatment seeking behaviour and specifically in light of the critical role played by informal caregivers in under resourced health care contexts.Practice implications(1) The assumption that English and Swahili are adequate in communication in Kenyan health care contexts ought to be reviewed. (2) Further research and assessment of language needs as a basis for training of language interpreters in the Kenyan health care system is a necessity.     

Brief report: does posttraumatic stress apply to siblings of childhood cancer survivors?

OBJECTIVE: To investigate whether adolescent siblings of childhood cancer survivors experience posttraumatic stress (PTS). METHODS: Participants included 78 adolescent siblings of adolescent cancer survivors who completed self-report measures of anxiety, PTS, and perceptions of the cancer experience. RESULTS: Nearly half (49%) of our sample reported mild PTS and 32% indicated moderate to severe levels. One fourth of siblings thought their brother/sister would die during treatment; over half found the cancer experience scary and difficult. These perceptions were related to PTS. Siblings reported more PTS symptoms than a reference group of nonaffected teens but had similar levels of general anxiety. CONCLUSIONS: Levels of PTS are elevated for siblings of childhood cancer survivors. Thus, PTS may be a useful model for understanding siblings' long-term reactions to cancer. Future research and clinical efforts should consider the needs of siblings of childhood cancer survivors in a family context.     

Adolescent cancer patients’ perceived quality of cancer care: The roles of patient engagement and supporting independence

Objectives

A lack of focus on variation in engagement among cancer populations of differing developmental stages led us to examine the associations between patient engagement, the patient-provider relationship, cognitive development, readiness to transition to adulthood (transitional readiness) and perceived quality of care.

Decision making and referral from primary care for possible lung and colorectal cancer: a qualitative study of patients’ experiences

Background

The challenge for GPs when assessing whether to refer a patient for cancer investigation is that many cancer symptoms are also caused by benign self-limiting illness. UK National Institute for Health and Care Excellence (NICE) referral guidelines emphasise that the patient should be involved in the decision-making process and be informed of the reasons for referral. Research to date, however, has not examined the extent to which these guidelines are borne out in practice.

Aim

To assess the degree to which patients are involved in the decision to be referred for investigation for symptoms associated with cancer and their understanding of the referral.

Design and setting

Qualitative interview study of patients referred to secondary care for symptoms suspicious of lung and colorectal cancer. Patients were recruited from two regions of England using maximum variation sampling.

Method

Transcribed interviews were analysed thematically.

Results

The analysis was based on 34 patient interviews. Patients in both symptom pathways reported little involvement in the decision to be referred for investigation. This tended to be accompanied by a patient expectation for referral, however, to explain ongoing and un-resolving symptoms. It was also found that reasons for referral tended to be couched in non-specific terms rather than cancer investigation, even when the patient was on a cancer-specific pathway.

Conclusion

GPs should consider a more overt discussion with patients when referring them for further investigation of symptoms suspicious of cancer. This would align clinical practice with NICE guidelines and encourage more open discussion between GPs and primary care patients around cancer.     

Enhancement of 5′-nucleotidase activity of human leukemic cells after fractionation: implications for cancer and aging

Previous studies reported that 5′-nucleotidase activity was undetectable or at much lower levels in the homogenate of human chronic lymphocytic leukemic (CCL) cells than in normal lymphocytes. In the present study, 5′-nucleotidase specific activity in acute myelocytic leukemia (AML), which varied in a range from undetectable to 1.4 (nmoles/min · mg protein), was enhanced by cell fractionation, from undetectable in the homogenate, up to 18.8 ± 1.2, 6.4 ± 0.7 and 0.68 ± 0.12 in plasma membranes, microsomes, and cytosol fraction, respectively. In a further fractionation of the cytosol of various leukemic cells with ammonium sulfate, 5′-nucleotidase specific activity increased up to 14-fold in the 60% (NH₄)₂SO₄ fraction, with a recovery of 1266 ± 115 %. These data suggest that 5′-nucleotidase activity in fractionated leukemic cells is higher than reported previously and that the sum of 5′-nucleotidase activity in subcellular compartments is higher than that detected in the homogenate . Furthermore, even when 5′-nucleotidase was undetectable in a homogenate, it became detectable in the plasma membranes, suggesting that its ecto-enzyme function is still active in leukemic cells. The undetectable or low 5′-nucleotidase in the homogenate is indicative of (1) the enzyme itself being in an inactive form but becoming active after the fractionations, or (2) the presence of a factor(s) that prevents the enzyme from being detected but that is separated from the enzyme by the fractionations. In both cases, the rate of nucleotide catabolism by inactive 5′-nucleotidase in rapidly proliferating leukemic cells should be slower than when the enzyme is active. The present finding is consistent with our previous findings that during normal cell aging the high 5′-nucleotidase activity is associated with senescent non-proliferating cells but low or undetectable activity with rapidly proliferating immortal cells. The implications of 5′-nucleotidase for DNA synthesis in aging and cancer are discussed.     

The complicated ‘Yes’: Decision-making processes and receptivity to lung cancer screening among head and neck cancer survivors

Objective

Shared decision making (SDM) is recommended when offering lung cancer screening (LCS)—which presents challenges with tobacco-related cancer survivors because they were excluded from clinical trials. Our objective was to characterize head and neck cancer (HNC) survivors’ knowledge, attitudes, and beliefs toward LCS and SDM.

Frequent co-expression of EGFR and NeuGcGM3 ganglioside in cancer: it’s potential therapeutic implications

Interaction between epidermal growth factor receptor (EGFR) signaling with GM3 ganglioside expression has been previously described. However, little is known about EGFR and NeuGcGM3 co-expression in cancer patients and their therapeutic implications. In this paper, we evaluate the co-expression of EGFR and NeuGcGM3 ganglioside in tumors from 92 patients and in two spontaneous lung metastasis models of mice (Lewis lung carcinoma (3LL-D122) in C57BL/6 and mammary carcinoma (4T1) in BALB/c). As results, co-expression of EGFR and NeuGcGM3 ganglioside was frequently observed in 63 of 92 patients (68 %), independently of histological subtype. Moreover, EGFR is co-expressed with NeuGcGM3 ganglioside in the metastasis of 3LL-D122 and 4T1 murine models. Such dual expression appears to be therapeutically relevant, since combined therapy with mAbs against these two molecules synergistically increase the survival of mice treated. Overall, our results suggest that NeuGcGM3 and EGFR may coordinately contribute to the tumor cell biology and that therapeutic combinations against these two targets might be a valid strategy to explore.     

Older cancer patients’ information and communication needs: What they want is what they get?

Objective

To evaluate what information and communication aspects older cancer patients (≥65) consider important in preparing for chemotherapy treatment (CT), the extent to which this corresponds with what oncology nurses consider important, and the extent to which nurses attend to these aspects during real-life educational visits in oncology.

Methods

The QUOTE^chemo was used to have patients (n = 116) and nurses (n = 123) rate the importance of 66 aspects of patient education. Subsequently, the implementation of these 66 aspects during videotaped nursing visits (n = 155) with older cancer patients receiving CT for the first time was examined.

Results

Older cancer patients attached most importance to ‘treatment-related information’, ‘rehabilitation information’, ‘affective communication’ and discussing ‘realistic expectations’. Nurses placed great importance to almost all aspects except to discussing ‘realistic expectations’. Discrepancies were found between expressed importance and the actual performance during the videotaped consultations, particularly in discussing realistic expectations, coping information, interpersonal communication, and tailored communication.

Conclusion

Results pointed to aspects that need improvement to ensure high quality patient education tailored to the patients’ needs.

Practice implications

To make sure older cancer patients’ needs are met, more attention should be paid to the development of interventions supporting both needs assessment and fulfillment.     

“Under My Umbrella”: The housing experiences of HIV positive parents who live with and care for their children in Ontario

Positive Spaces, Healthy Places (PSHP) is the first longitudinal community-based research (CBR) initiative in Canada to examine housing stability and its relationship to health related quality of life (HRQOL) for people living with of HIV/AIDS (PHAs). As part of our mixed method data collection strategy in-depth, semi-structured interviews were conducted with 50 PHAs across Ontario to provide a deeper understanding of the impact that housing instability has on their mental and physical health. Emerging from the qualitative interviews were the unique issues and concerns that were reported by parents who live with and care for their children. These parents face dire housing, economic and social challenges that are associated with significant risks for poor health outcomes. Poor housing conditions, unsafe neighborhoods, barriers to supports for themselves and their children, HIV related stigma, discrimination, racism, and poverty have been identified by these families as being among their most pressing concerns. This results in increased stress and anxiety that has a negative impact on the mental health of HIV positive parents. In order to more effectively support HIV positive parents and their children, health and social service practices and policies must respond to the unique challenges that face these families.     

Patients’ perceptions of palliative care: adaptation of the Quality from the Patient’s Perspective instrument for use in palliative care,and description of patients’ perceptions of care received

Background

Globally, the number of people who die with dementia is increasing. The importance of a palliative approach in the care of people with dementia is recognised and there are national polices to enhance current care. In the UK implementation of these polices is promoted by the National Institute for Health and Care Excellence (NICE) Dementia Quality Standards (QS). Since publication of the QS new care interventions have been developed.

Aim

To explore critically the current international research evidence on effect available to inform NICE Dementia QS relevant to end of life (EOL) care.

Design

We used systematic review methods to seek the research evidence for three statements within the Dementia QS. These are those that recommend: (1) a case management approach, (2) discussing and consideration of making a statement about future care (SFC) and (3) a palliative care assessment (PCA). We included evaluative studies of relevant interventions that used a comparative design, such as trials and cohort studies, and measured EOL care outcomes for persons dying with moderate to severe dementia. Our primary outcome of interest was whether the intervention led to a measurable impact on wellbeing for the person with dementia and their family. We assessed included studies for quality using a scale by Higginson and colleagues (2002) for assessment of quality of studies in palliative care, and two authors undertook key review processes. Data sources included Cinahl, Embase, and PsychINFO from 2001 to August 2014. Our search strategy included free text and medical subject headings relevant to population and recommended care.

Results

We found seven studies evaluating a care intervention; four assessed SFC, three PCA. None assessed case management. Studies were of weak design; all used retrospective data and relied on others for precise record keeping and for accurate recall of events. There was limited overlap in outcome measurements. Overall reported benefits were mixed.

Conclusions

Quality statements relevant to EOL care are useful to advance practice however they have a limited evidence base. High quality empirical work is needed to establish that the recommendations in these statements are best practice.

     

CXCL12, CXCR4 and IFNγ genes expression: implications for proinflammatory microenvironment of breast cancer

Signals from the microenvironment have a profound influence on the maintenance or progression of breast cancer. In the present study, the frequency of CXCL12 rs1801157 polymorphism in peripheral blood and the expression of CXCL12, CXCR4 and IFNγ mRNA in normal and mammary gland tumor tissues were assessed in breast cancer patients. Genotyping was performed by polymerase chain reaction followed by restriction fragment length polymorphism and expression analyses by quantitative RT-PCR. A lower CXCL12 mRNA relative expression was observed among allele A carriers when compared to GG carriers (p = 0.012). ER-positive breast cancer allele A carriers showed a significantly lower expression of CXCL12 mRNA within tumor tissue than in normal breast tissue when compared to GG ER-positive patients (p = 0.016). CXCR4 mRNA (p < 0.001) and CXCL12 mRNA (p = 0.02) relative expressions were significantly correlated with relative IFNγ mRNA expression. Allele A carriers presenting high levels of IFNγ had a significantly higher expression of CXCR4 mRNA in tumor tissue than GG patients (p = 0.026). It is possible that allele A carrier hormone receptor–positive patients could be more susceptible to metastasis development, since they present a lower CXCL12 expression in tumor tissue, and tumor cells expressing CXCR4 could migrate toward CXCL12 gradient. IFNγ expression increases in order to improve immune response and could favor higher CXCR4 expression leading to migration of cells, possibly of metastatic ones, too.     

Brain tumour patients’ use of social media for disease management: Current practices and implications for the future

ObjectiveThe role of social media in disease management is evolving. We aimed to define current use of social media for patients with primary brain tumours.MethodsThis was a single-centre cross-sectional prospective study; a questionnaire was administered on electronic tablets to patients in the Outpatient Department of Royal Melbourne Hospital.ResultsOf the 201 participants, 55.7 % were female and 61.2 % were aged 30–59 years. The Internet was used by 84.5 % of participants, 70.6 % of those used social media. This included social networking sites (33.1 %), wikis (28.1 %) and blogs (14.0 %) to access information, for communication or for interaction related to their brain tumour. Participants indicated preferences for privacy and flexibility and valued when health professionals contributed. Subjective social functioning and activities of daily living benefits were reported from use, however no difference in Health Related Quality of Life was found between social media users and non-users.ConclusionsThis study is the first to examine social media use in disease management for brain tumour patients and defines its use and potential for targeted online interventions.Practice ImplicationsThrough identifying concerns regarding current social media sites and determining preferences of patients we have created recommendations to direct design of online content for patients.     

A ‘metastasis-prone’ signature for early-stage mismatch-repair proficient sporadic colorectal cancer patients and its implications for possible therapeutics

Metastasis is the major cause of cancer mortality. We aimed to find a metastasis-prone signature for early stage mismatch-repair proficient sporadic colorectal cancer (CRC) patients for better prognosis and informed use of adjuvant chemotherapy. The genome-wide expression profiles of 82 age-, ethnicity- and tissue-matched patients and healthy controls were analyzed using the Affymetrix U133 Plus 2 array. Metastasis-negative patients have 5 years or more of follow-up. A 10 × 10 two-level nested cross-validation design was used with several families of classification models to identify the optimal predictor for metastasis. The best classification model yielded a 54 gene-set (74 probe sets) with an estimated prediction accuracy of 71%. The specificity, sensitivity, negative and positive predictive values of the signature are 0.88, 0.58, 0.84 and 0.65, respectively, indicating that the gene-set can improve prognosis for early stage sporadic CRC patients. These 54 genes, including node molecules YWHAB, MAP3K5, LMNA, APP, GNAQ, F3, NFATC2, and TGM2, integrate multiple bio-functions in various compartments into an intricate molecular network, suggesting that cell-wide perturbations are involved in metastasis transformation. Further, querying the `Connectivity Map’ with a subset (70%) of these genes shows that Gly-His-Lys and securinine could reverse the differential expressions of these genes significantly, suggesting that they have combinatorial therapeutic effect on the metastasis-prone patients. These two perturbagens promote wound-healing, extracellular matrix remodeling and macrophage activation thus highlighting the importance of these pathways in metastasis suppression for early-stage CRC.     

Older adults’ memory for medical information,effect of number and mode of presentation: An experimental study

ObjectiveTo analyze different ways of presenting medical information to older adults, tailoring the information and its presentation to the characteristics of memory function in old age.MethodsExperimental study. We took into account the following variables: amount of information, type of information and mode of presentation, and time delay.ResultsThe greater the number of recommendations, the lower the recall; visual presentation does not enhance verbal presentation; lifestyle information is recalled better than medication information; after ten minutes the percentage of memory decreases significantly; the first and last recommendations are better remembered.ConclusionAs a whole, these findings show that older adults remember more medical information when very few recommendations are provided in each session.Practice implicationsIt is inadvisable to overload older adults with a large amount of information: It is better to program more consultations and provide less information.     

Treatment decision-making in ductal carcinoma in situ: A mixed methods systematic review of women’s experiences and information needs

ObjectiveDecision-making in ductal carcinoma in situ (DCIS) is complex due to the heterogeneity of the disease. This study aimed to understand women’s experience of making treatment decisions for DCIS, their information and support needs, and factors that influenced decisions.MethodsWe searched six electronic databases, conference proceedings, and key authors. Two reviewers independently applied inclusion and quality criteria, and extracted findings. Thematic analysis was used to combine and summarise findings.ResultsWe identified six themes and 28 subthemes from 18 studies. Women with DCIS have knowledge deficits about DCIS, experience anxiety related to information given at diagnosis and the complexity of decision-making, and have misconceptions regarding risks and outcomes of treatment. Women’s decisions are influenced by their understanding of risk, the clinical features of their DCIS, and the benefits and harms of treatment options. Women are dissatisfied with the decisional support available.ConclusionsInformed and shared decision-making in this complex decision setting requires clear communication of information specific to DCIS and individual’s, as well as decision support for patients and clinicians.Practice implicationsThis approach would educate patients and clinicians, and assist clinicians in supporting patients to an evidence-based treatment plan that aligns with individual values and pReferences