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.     

Customization of information on adverse drug reactions according to patients’ needs – A qualitative study

ObjectivesInterviewing patients, we evaluated how information on adverse drug reactions (ADRs) could be customized to best meet the patients’ expectations.MethodsRecruitment followed an approach of variation sampling. Data collection was paper-based (questionnaires) and through semi-structured interviews. Participants were asked to evaluate different ADR characteristics (e.g. frequency, seriousness, lay perceptibility, and management strategies) as suitable filters to customize information and subsequently how they would apply these to meet their information wishes. Their wishes were then verified by presenting them accordingly customized information.ResultsForty-one participants (mean age 44.9 ± 20.1 years) were recruited. Overall, information needs were highly diverse. Therefore, it was not possible to identify one single characteristic that was generally considered suitable. Initially, participants often wished for a maximum of information (e.g. ‘all’ ADRs). The actual presentation of comprehensive information often surprised the recipients and consequently changed the desired information.ConclusionsBy simply supplying patients with ADR information they request, it is not possible to guarantee their satisfaction with such information and their understanding of it; initial wishes might be uttered without actually comprehending their practical meaning.Practice ImplicationsIt is crucial to precisely assess, question, and verify information wishes in order to customize ADR information successfully.     

Do breast cancer patients receive less support from physicians in German hospitals with high physician workload? A multilevel analysis

Objective

Little is known about how organizational factors influence the patient–physician interaction. This study investigates the relationship between physician workload in hospitals and breast cancer patients’ perceptions of the support provided by physicians.

Methods

Data from 1844 newly diagnosed breast cancer patients treated in 35 breast cancer center hospitals in the German state of North Rhine-Westphalia in 2010 were combined with data from 348 physicians from the same hospitals. Multilevel logistic regression models were calculated using 31 hospitals with complete patient and physician data. Patients’ perceptions of physician support were studied in relation to physician workload in hospitals.

Results

Breast cancer patients perceived themselves as receiving less support from physicians when treated in hospitals where physicians reported working more overtime hours and having less time for patient care.

Conclusion

This study provides preliminary evidence of the association between the hospital work environment and physicians’ ability to support patients. Future studies should investigate the extent to which physicians’ interaction performance can be modified through hospital-level interventions aimed at managing workload.

Practice implications

By approaching the problem of physician staffing in hospitals and investing in the hospitals’ working conditions, health policy and hospital management could create conditions conducive to better patient–physician interaction.     

Significance of BRCA1 expression in breast and ovarian cancer patients with brain metastasis – A multicentre study

PurposeCerebral metastases develop in 10–30% of patients with breast cancer (BC) and in around 3.3 to 4% of patients with ovarian cancer (OC). The aim of the multicenter study is to investigate the correlation between the expression of estrogen alpha receptors (ERα), progesterone receptors (PR), human epidermal growth factor receptor 2 (HER2), stromal cell-derived factor 1 (SDF1) and its receptor C-X-C chemokine receptor type 4 (CXCR4), breast cancer metastasis suppressor 1 (BRMS1), astrocyte elevated gene 1 (AEG1), depending on the status of BRCA1 protein, in patients suffering from OC and BC with brain metastases.Patients and methodsThe analysis included 51 patients: 29 with BC and 22 with OC, in whom brain metastases were disclosed.ResultsIn most patients (65.5% of BC patients and 68.2% of patients with OC tumors) BRCA1 protein loss was found. No correlation was disclosed between the levels of ERα, PR receptors, HER2, SDF1, CXCR4, AEG1, BRMS1 and BRCA1 status, patient age, stage of disease advancement, grade of histological maturity of the cells, presence of metastases to lymph nodes. A statistically significant correlation was disclosed between the negative expression of PR receptors and a high expression of CXCR4 in patients with BC. High values of the AEG1 protein (linked to metastases) were detected alongside a high expression of BRMS1 (a suppressor of metastases).ConclusionsPatients with BC and OC and brain metastases have a frequent loss of BRCA1 expression. The role of ERα, PR, HER2, SDF1, CXCR4, AEG1, BRMS1 in metastatic process needs further studies.     

Decision-making about fertility preservation—qualitative data on young cancer patients’ attitudes and needs

The aim of the study was to get deeper insight into the significance of fertility in cancer patients, their attitude towards fertility preservation (FP), decisional conflicts, and patient’s needs in the decision-making process. Focus groups with 12 female cancer survivors were held and revealed that the significance of fertility was high and attitude towards FP positive. Religious and ethical reservations were not negligible. Standardized decision aids were considered helpful. More support is highly in demand and specific tools would be beneficial.     

Parents’ needs and perceived gaps in communication with healthcare professionals in the neonatal (intensive) care unit: A qualitative interview study

ObjectiveTo explore parents’ needs and perceived gaps concerning communication with healthcare professionals during their preterm infants’ admission to the neonatal (intensive) care unit (NICU) after birth.MethodsSemi-structured, retrospective interviews with 20 parents of preterm infants (March 2020), admitted to a Dutch NICU (level 2–4) minimally one week, one to five years prior. The interview guide was developed using Epstein and Street’s Framework for Patient-Centered Communication. Online interviews were audio-taped and transcribed verbatim. Deductive and inductive thematic analysis was performed by two independent coders.ResultsCommunication needs and gaps emerged across four main functions of NICU communication: Building/maintaining relationships, exchanging information, (sharing) decision-making, and enabling parent self-management. Communication gaps included: lack of supportive physician communication, disregard of parents’ views and agreements, missing communication about decisions, and the absence of written (discharge) information.ConclusionThis study improves our understanding and conceptualization of adequate NICU communication by revealing persisting gaps in parent-provider interaction. Also, this study provides a steppingstone for further integration of parents as equal partners in neonatal care and communication.Practice implicationsThe results are relevant to practitioners in the field of neonatal and pediatric care, providing suggestions for tangible improvements in NICU care in the Netherlands and beyond.     

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.     

“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.     

Patients’ preferred and perceived decision-making roles,and observed patient involvement in videotaped encounters with medical specialists

ObjectiveTo assess how patients prefer and perceive medical decision making, which factors are associated with their preferred and perceived decision-making roles, and whether observed involvement reflects patients’ perceived role.MethodsWe asked 781 patients visiting a medical specialist from 18 different disciplines to indicate their preferred and perceived decision-making roles. Patient involvement in videotaped consultations was assessed with the OPTION5 instrument.ResultsMost patients preferred and perceived decision making as shared (SDM; 58% and 43%, respectively), followed by paternalistic (26% and 38%), and informative (16% and 15%). A large minority (n = 103, 21%) of patients preferring shared or informative decision making (n = 482) experienced paternalistic decision making. Mean (SD) OPTION5 scores were highest in consultations which patients perceived as informative (26.0 (19.7)), followed by shared (19.1 (17.2)) and lowest in paternalistic decision making (11.8 (13.4) p < 0.001).ConclusionsMost patients want to be involved in decision making. Patients perceive that the physician makes the decision more often than they prefer, and perceive more involvement in the decision than objective assessment by an independent researcher shows.Practice implicationsA clearer understanding of patients’ medical decision-making experiences is needed to optimize physician SDM training programmes and patient awareness campaigns.     

When cure is no option: How explicit and hopeful can information be given? A qualitative study in breast cancer

Objective

To investigate how oncologists can balance explicit with general and realistic with hopeful information when discussing various topics at the transition from curative to palliative care in breast cancer.

Methods

Qualitative analysis of focus groups consisting of female breast cancer survivors and healthy women.

Results

Perceptions of survivors and healthy women largely overlapped. Participants thought that oncologists can help patients regain a future perspective during this consultation. To achieve this, four themes seemed important: honest medical information, availability of continued support, hope has many faces, and space to choose. Moreover, participants stressed they would need time to let the message sink in before any further information was provided.

Conclusion

Participants thought that when confronted with this type of consultation they would need – more or less explicit – medical information and information regarding support. In order to maintain hope, knowledge about (treatment) possibilities is important, but also the certainty not to be abandoned by the hospital at a later stage of the disease and the confidence to remain able to make one's own decisions.

Practice implications

A life-limiting diagnosis may shatter patients’ future perspective; however, this study provides suggestions for oncologists to create a new perspective.     

Exploring cancer patients’, caregivers’, and clinicians’ utilisation and experiences of telehealth services during COVID-19: A qualitative study

ObjectivesThe COVID-19 pandemic has significantly impacted oncology. With pandemic restrictions limiting close contact between individuals, telehealth (the use of teleconferencing/videoconferencing to conduct real-time medical consultations) has been increasingly utilised. This qualitative study aimed to explore adult cancer patient, caregiver, and clinician (doctor, nurse, allied health) telehealth experiences during COVID-19 in urban and rural Australian settings and identify potential enablers and barriers to sustained telehealth implementation.MethodsEnglish-speaking participants completed semi-structured interviews regarding their telehealth experiences since March 2020. Interviews ceased when data saturation occurred. Iterative thematic analysis was conducted using NVivo 12 Pro.ResultsThirty-four interviews (clinician=14, patient=13, caregiver=7) were conducted from April to August 2021. Analysis generated seven themes relating to telehealth use: 1) Acceptability as a form of consultation, 2) Impacts on healthcare provision, 3) Communication & relationships, 4) Efficient form of consultation, 5) Comfort of conducting telehealth in different environments, 6) Technological barriers and 7) Future preferences.ConclusionsThe rapid uptake of telehealth during the pandemic has mostly been well-received, and telehealth can be appropriately used in oncology.Practice implicationsBarriers including providing appropriate facilities, technology, and telehealth training; and selecting appropriate patients must be addressed to enable sustained telehealth use in future cancer care.     

Robot or radiation? A qualitative study of the decision support needs of men with localised prostate cancer choosing between robotic prostatectomy and radiotherapy treatment

ObjectiveTo understand how best to support men diagnosed with localised prostate cancer to decide which treatment option best suits their needs, when robotic prostatectomy and radiotherapy are equally appropriate to offer them.MethodsTwenty-five men recently diagnosed with localised prostate cancer completed semi-structured interviews asking about information/decision-making needs before and/or after attending a combined clinic in which they consulted a urologist and a radiation oncologist regarding treatment options. Data was transcribed verbatim and thematically analysed.ResultsMost men preferred robotic prostatectomy pre-combined clinic and chose it afterwards. The thematic analysis revealed four themes: 1) trust in clinicians and the information they provide is critical for treatment choice, 2) perceived fit between treatment characteristics and personal circumstances, 3) additional considerations: specific side effects, socio-emotional and financial factors, and 4) need for tailored information delivery. Robotic prostatectomy was mistakenly believed to provide a more definitive cure than radiotherapy, which was seen as having a lesser lifestyle impact.ConclusionsTreatment choice is largely dependent on clinicians’ (mainly urologists’) recommendations.Practice implicationsPatients need more balanced information about alternatives to robotic prostatectomy earlier in the treatment decision-making process. Referral to a radiation oncologist or combined clinic shortly after diagnosis is recommended.     

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.     

Soluble type III TGFβ receptor in diagnosis and follow-up of patients with breast cancer

Abstract

Type III transforming growth factor (TGFβ) receptor (TGFβrIII) modulates TGFβ superfamily signaling. Its tumor tissue expression is downregulated in human breast cancer. We determined (indirect ELISA) plasma levels of the soluble receptor (sTGFβrIII) in 47 women with breast cancer (AJCC stages 0–IIB) (cases) pre-surgery and over two months after the surgery, and in 36 healthy women (controls). Plasma sTBFβrIII was lower in cases than in the controls (age-adjusted difference ?29.7?ng/mL, p?<?0.001), and discriminated between disease and health (sensitivity and specificity 100% at 16.6?ng/mL). With adjustment for age, AJCC stage, lymph node involvement, HER2 and hormone receptor status, higher pre-surgery sTBFβrIII was associated with better progression-free survival (HR?=?0.68, 95%CI 0.49–0.89, p?=?0.004). An increasing trend in plasma sTBFβrIII was observed over 2 months after the surgery (0.6% increase/day, p?<?0.001), consistently across the patient subsets. Data suggest a high potential of plasma sTBFβrIII as a novel diagnostic and prognostic biomarker in breast cancer.     

The challenges with managing polycystic ovary syndrome: A qualitative study of women’s and clinicians’ experiences

ObjectiveTo explore clinicians’ and women’s views and experiences with managing polycystic ovary syndrome (PCOS).MethodsSemi-structured interviews with 36 clinicians and 26 women with PCOS. Clinicians were recruited through advertising via relevant professional organisations, snowballing and contacting clinics across Australia. Women with PCOS were recruited through social media advertising. Transcribed audio-recordings were analysed thematically using Framework analysis.ResultsFindings across women with PCOS and clinician interviews were organised into three themes. Both women and clinicians experienced 1) challenges with managing PCOS, often stemming from the disparate and wide spectrum of presentations, issues with current treatment options (including limited evidence) and the long-term nature of management. Both spoke about 2) online information about PCOS and alternative treatments, including lack of relevant information and widespread misinformation. 3) Follow-up and continuity of care, where we found notable differences between women’s and clinicians’ expectations.ConclusionsThis is the first study to explore both clinicians’ and women’s experiences with managing PCOS, illustrating several challenges in managing this heterogeneous condition.Practice implicationsClarifying and addressing patient expectations, providing personalised counselling and information according to PCOS phenotype and a multidisciplinary approach may reduce uncertainty and improve patient-centred care.     

Do anxiety, body image, social support and coping strategies predict survival in breast cancer? A ten-year follow-up study

A longitudinal study enrolled 75 women with primary breast cancer. Before the confirmation of diagnosis, authors measured trait-anxiety and body satisfaction. Three weeks after diagnosis, coping strategies and state-anxiety were evaluated. The number of days of survival was measured 10 years after diagnosis. In Cox proportional-hazards models adjusting for severity of disease and age, high social support and low state-anxiety predicted an increased risk of death from breast cancer. A significant increased risk of death in women with low scores on the Body Image Questionnaire appeared only in the univariate model.