COVID-19 increased censorship circumvention and access to sensitive topics in China.

Crisis motivates people to track news closely, and this increased engagement can expose individuals to politically sensitive information unrelated to the initial crisis. We use the case of the COVID-19 outbreak in China to examine how crisis affects information seeking in countries that normally exert significant control over access to media. The crisis spurred censorship circumvention and access to international news and political content on websites blocked in China. Once individuals circumvented censorship, they not only received more information about the crisis itself but also accessed unrelated information that the regime has long censored. Using comparisons to democratic and other authoritarian countries also affected by early outbreaks, the findings suggest that people blocked from accessing information most of the time might disproportionately and collectively access that long-hidden information during a crisis. Evaluations resulting from this access, negative or positive for a government, might draw on both current events and censored history.

Dynamic Public Perceptions of the Coronavirus Disease Crisis, the Netherlands, 2020.

A key component of outbreak control is monitoring public perceptions and public response. To determine public perceptions and public responses during the first 3 months of the coronavirus disease (COVID-19) outbreak in the Netherlands, we conducted 6 repeated surveys of ≈3,000 persons. Generalized estimating equations analyses revealed changes over time as well as differences between groups at low and high risk. Overall, respondents perceived the risks associated with COVID-19 to be considerable, were positive about the mitigation measures, trusted the information and the measures from authorities, and adopted protective measures. Substantial increases were observed in risk perceptions and self-reported protective behavior in the first weeks of the outbreak. Individual differences were based mainly on participants' age and health condition. We recommend that authorities constantly adjust their COVID-19 communication and mitigation strategies to fit public perceptions and public responses and that they tailor the information for different groups.

Exploring fear of COVID-19 and its correlates among older adults in Bangladesh.

OBJECTIVE: This study was aimed to assess the perceived fear of COVID-19 and its associated factors among older adults in Bangladesh. METHODS: This cross-sectional study was conducted in October 2020 among 1032 older Bangladeshi adults aged ≥60 years. A semi-structured questionnaire was used to collect information on participants' characteristics and COVID-19 related information. Perceived fear of COVID-19 was measured using the seven-item Fear of COVID-19 Scale (FCV-19S), where the cumulative score ranged from 7 to 35. Multiple linear regression was performed to identify factors associated with perceived fear of COVID-19. RESULTS: The mean fear score was 19.4. Participants who were concerned about COVID-19 (ß: 2.75, 95% CI: 1.71 to 3.78) and overwhelmed by COVID-19 (ß: 3.31, 95% CI: 2.33 to 4.29) were significantly more likely to be fearful of COVID-19. Moreover, older adults who felt themselves isolated from others and whose close friends and family members were diagnosed with COVID-19 were more fearful. However, the participants who received COVID-19 related information from the health workers had a lower level of fear (ß: -1.90, 95% CI: - 3.06 to - 0.73). CONCLUSIONS: The presence of overwhelming fear of COVID-19 among the older adults of Bangladesh underlines the psychological needs of these vulnerable groups. Health workers have a key role in addressing these needs and further research is needed to identify the effective strategies for them to use.

The impact of COVID-19 on the cancer care of adolescents and young adults and their well-being: Results from an online survey conducted in the early stages of the pandemic.

BACKGROUND: Because of the global spread of coronavirus disease 2019 (COVID-19), oncology departments across the world have rapidly adapted their cancer care protocols to balance the risk of delaying cancer treatments and the risk of COVID-19 exposure. COVID-19 and associated changes may have an impact on the psychosocial functioning of patients with cancer and survivors. This study was designed to determine the impact of the COVID-19 pandemic on young people living with and beyond cancer. METHODS: In this cross-sectional study, 177 individuals, aged 18 to 39 years, were surveyed about the impact of COVID-19 on their cancer care and psychological well-being. Participants also reported their information needs with respect to COVID-19. Responses were summarized with a content analysis approach. RESULTS: This was the first study to examine the psychological functioning of young patients and survivors during the first weeks of the COVID-19 pandemic. A third of the respondents reported increased levels of psychological distress, and as many as 60% reported feeling more anxious than they did before COVID-19. More than half also wanted more information tailored to them as young patients with cancer. CONCLUSIONS: The COVID-19 pandemic is rapidly evolving and changing the landscape of cancer care. Young people living with cancer are a unique population and might be more vulnerable during this time in comparison with their healthy peers. There is a need to screen for psychological distress and attend to young people whose cancer care has been delayed. As the lockdown begins to ease, the guidelines about cancer care should be updated according to this population's needs.

Preferences for Accessing Electronic Health Records for Research Purposes: Views of Parents Who Have a Child With a Known or Suspected Genetic Condition.

OBJECTIVES: The purpose of this study was to examine parental preferences for researchers accessing their child's electronic health record across 3 groups: those with a child with (1) a known genetic condition (fragile X syndrome FXS), (2) a suspected genetic condition (autism spectrum disorder [ASD]), and (3) no known genetic condition (typically developing). METHODS: After extensive formative work, a discrete choice experiment was designed consisting of 5 attributes, each with 2 or 3 levels, including (1) type of researcher, (2) the use of personally identifiable information, (3) the use of sensitive information, (4) personal importance of research, and (5) return of results. Stratified mixed logit and latent class conditional logit models were examined. RESULTS: Parents of children with FXS or ASD had relatively higher preferences for research conducted by nonprofits than parents of typically developing children. Parents of children with ASD also preferred research using non-identifiable and nonsensitive information. Parents of children with FXS or ASD also had preferences for research that was personally important and returned either summary or individual results. Although a few child and family characteristics were related to preferences, they did not overall define the subgroups of parents. CONCLUSIONS: Although electronic health record preference research has been conducted with the general public, this is the first study to examine the opinions of parents who have a child with a known or suspected genetic condition. These parents were open to studies using their child's electronic health record because they may have more to gain from this type of research.

Dimensions of women's empowerment on access to skilled delivery services in Nepal.

BACKGROUND: Each day, approximately 810 women die during pregnancy and childbirth and 94% of the deaths take place in low and middle income countries. Only 45% of the births in South Asia are attended by skilled professionals, which is lower than that in other Asian regions. Antenatal and postnatal care received from skilled providers can help prevent maternal and neonatal mortality by identifying pregnancy-related complications. Women's empowerment is considered to be a significant determinant of maternal health care outcomes; however, studies on the contextual influences of different dimensions of empowerment in Nepal are relatively limited. Therefore, this study analyzed nationwide survey data to examine the influence of women's economic empowerment, sociocultural empowerment, familial/interpersonal empowerment and media and information technology empowerment on accessing skilled delivery services among the married women in Nepal. METHODS: This study examined the influence of women's empowerment on skilled delivery services among married women (n = 4400) aged 15-49 years using data from the 2016 Nepal Demographic and Health Survey. Descriptive analysis and binary logistic regression analysis were employed to analyze the data. RESULTS: Significant associations were found between women's media and information technology empowerment, economic empowerment and sociocultural empowerment and access to skilled birth attendants. Specifically, the education of women, their occupation, owning a bank account, media exposure, and internet use were significantly associated with the use of skilled birth attendants. CONCLUSION: Focusing on women's access to media and information technology, economic enhancement and education may increase the use of skilled birth attendants in Nepal.

Publishing habits and perceptions of open access publishing and public access amongst clinical and research fellows.

INTRODUCTION: Open access (OA) publishing rates have risen dramatically in the biomedical sciences in the past decade. However, few studies have focused on the publishing activities and attitudes of early career researchers. The aim of this study was to examine current publishing activities of clinical and research fellows and their perceptions of OA publishing and public access. METHODS: This study employed a mixed methods approach. Data on publications authored by Memorial Sloan Kettering Cancer Center fellows between 2013 and 2018 were collected via an in-house author profile system and citation indexes. Journals were categorized according to SHERPA/RoMEO classifications. In-person and telephone interviews were conducted with fifteen fellows to discern their perceptions of OA publishing. RESULTS: The total percentage of fellows' publications that were freely available OA was 28.6%, with a relatively flat rate between 2013 and 2018. Publications with fellows as first authors were significantly more likely to be OA. Fellows cited high article processing charges (APCs) and perceived lack of journal quality or prestige as barriers to OA publishing. Fellows generally expressed support for the National Institutes of Health (NIH) public access policy. CONCLUSIONS: While the fellows in this study acknowledged the potential of OA to aid in research dissemination, they also expressed hesitation to publish OA related to confusion surrounding legitimate OA and predatory publications and frustration with APCs. Fellows supported the NIH public access policy and accepted it as part of their research process. Health sciences information professionals could potentially leverage this acceptance of public access to advocate for OA publishing.

Access to Personal Health Records and Screening for Breast and Cervical Cancer Among Women with a Family History of Cancer.

It is essential for at-risk women to be screened for breast and cervical cancer in a timely manner. Despite a growing interest in the role of health information technology including personal health records (PHRs) to improve quality and outcomes in health care, less is known about the effectiveness of PHRs to promote breast and cervical cancer screening among women with a family history of cancer (FHC). We examined the association between access to PHRs and the use of a recommended mammography and a Pap smear testing among women with a FHC using data from the 2015 Health Information National Trends Survey (HINTS 4-cycle 4) and the 2016 Area Health Resource Files. The study sample was comprised of 1250 women aged 20-75 years with a FHC, a subsample of 3677 survey respondents. Of the 1250 women, 64.96% received a mammogram, and 75.44% underwent a Pap testing. Among women with a FHC, there was a significant and positive association between access to PHRs and the receipt of a mammogram (adjusted odds ratio (aOR) 4.20; 95% CI, 2.23-7.94; p < .001) and a Pap testing (aOR 3.13; 95% CI, 1.56-6.28; p < .01). Our findings suggest that at-risk women can benefit from greater access to PHRs. Policymakers should consider incentivizing providers and healthcare organizations who provide access to PHRs to their patients as well as developing programs that can help improve access to PHRs among at-risk women.

Governing Commercial Access to Health Data for Public Benefit: Charity Law Solutions.

There is a growing body of evidence that supports the view that research participants and the public are concerned about commercial access to health data. Evidence also suggests that attitudes are ameliorated when charity organisations are involved and where research promises to deliver 'public benefit'. To a significant extent, therefore, mechanisms that ensure the public benefit are key to sustaining public and participant support for research access to health data. As a regime founded on the concept of public benefit, charity law provides regulatory and governance mechanisms through which the public benefit of a charity is protected and promoted. This article examines the merits of charity law mechanisms and analyses their significance for governance of commercial access to health data for public benefit, using UK Biobank Ltd, a charitable company limited by guarantee, as an example. The article critically analyses three charity law mechanisms that operate to ensure that an organization providing access to data meets its public benefit requirements: charitable purposes; members' and directors' powers and duties; and accountability via the oversight powers of the Charity Commission and charity proceedings in court. The article concludes that there is potential for the charity model to be the benchmark for governing commercial access to health data for public benefit research, but notes the limitations of the model and recommends the appointment of independent data governance committees to further bolster the charity law framework.

Recurrent pregnancy loss: couples' perspectives on their need for treatment, support and follow up.

STUDY QUESTION: What do couples referred to or attending a recurrent pregnancy loss (RPL) clinic believe they need in terms of treatment, support and follow up? SUMMARY ANSWER: Men and women wish for more information, earlier access to treatment, support and follow up that is sensitive to their history of pregnancy loss (PL), includes both members of the couple, and acknowledges the psychological impact of RPL. WHAT IS KNOWN ALREADY: Previous research has highlighted women's dissatisfaction with medical care provided post-PL and their desire for medical professionals to have increased awareness about PL and recognition of the psychological impact of PL. Less is known about the needs of the male partner, the needs of those experiencing RPL and whether the needs differ during different reproductive stages. STUDY DESIGN, SIZE, DURATION: Over a 2-month period in 2017-2018, 13 couples who were referred to the national RPL program in Copenhagen, Denmark were qualitatively interviewed. PARTICIPANTS/MATERIALS, SETTING, METHODS: Inclusion criteria were heterosexual couples with at least three consecutive PLs before 12 weeks' gestation with no children or one child prior to the PLs, not currently pregnant, and willing to be interviewed in English. Couples were interviewed together in a semi-structured format. Data were analyzed using thematic analysis. Invitations (n = 30) were sent to couples recently referred to the RPL program who indicated an interest in participating and 17 couples contacted the interviewer to schedule an interview. Due to cancellations, 15 interviews were held. Data from 13 interviews that met the study criteria were used for the current analysis. MAIN RESULTS AND THE ROLE OF CHANCE: The participants had experienced a median of three PLs (range 3-6). Both men and women described the cumulative effect of RPL with an increase in pressure and exhaustion by the third and subsequent losses. Inclusion of the male partner in consultations and treatment was seen as important. Men felt pressured to remain positive and support their partners despite their own feelings of loss. The findings showed that couples desired reliable and accurate information about RPL. They wished for recognition from the medical community that RPL has a significant psychological impact, and stressed that effective treatment should include both members of the couple, with attention to both physical and psychological aspects of the RPL and should be tailored to their current reproductive stage, in order to help them cope with the negative impact of RPL and the anxiety associated with conception and another pregnancy. LIMITATIONS, REASONS FOR CAUTION: Participants were self-selected thus findings cannot be generalized to all couples with RPL. WIDER IMPLICATIONS OF THE FINDINGS: This is the first study addressing the needs of the female and male partners in couples suffering from RPL. The findings highlight a disconnect between couples' perceived needs and their experience of medical care after RPL. This may be partly due to a discrepancy in couples' and medical professionals' perceptions of the PLs. The findings highlight that medical professionals need to take a holistic and couple-focused approach in their treatment of RPL and include attention to the psychological impact and cumulative effect of the multiple PLs on the couple. The results underscore the need for informational resources and psychological support for couples experiencing RPL, tailored to their reproductive stage. STUDY FUNDING/COMPETING INTEREST(S): EK was funded by a Travel/Training Fellowship from ReproUnion, co-financed by the European Union, Interreg V ÖKS. No other competing interests were declared. TRIAL REGISTRATION NUMBER: N/A.

"Yes they have the right to know, but ": Young Adult Women Managing Private Health Information as Dependents.

This study explored how young adult women manage privacy regarding their health information as dependents on a parent's insurance policy. Under current and proposed health care reform in the United States, young adults between the ages of 18 and 26 years can remain on a parent's policy as a dependent, which can improve young adult's access to health care services. Although dependent expansion provisions can improve coverage for young adults, it may also threaten their privacy by giving a parent access to adult-child's private health information. Using Communication Privacy Management, this study investigated how dependent young adult women conceptualize and negotiate information ownership with parents in a forced disclosure situation. Results revealed young adult women either felt they alone should own and control their health information or believed a parent as the policy hold should have access to the information. However, all preferred to be in control of the disclosure and used core and catalyst criteria to manage the privacy dilemma current health care policy creates. Specifically, the threat of a parent seeing an adult-child used a stigmatized health service motivated young adult women to engage in deception, pay out of pocket for services covered by insurance, and put off or avoid health care. Results of this study complicate assumptions about privacy management and demonstrate how health care policy affects family communication.

Web-Based Health Information Technology: Access Among Latinos Varies by Subgroup Affiliation.

BACKGROUND: There are significant health technology gaps between Latinos and non-Hispanic whites and between first- and second-generation Latinos. OBJECTIVE: This study aimed to examine disparities in Web-based health information-seeking behavior (HISB) and patient portal use among Latinos, taking into account nativity and subethnic affiliation. METHODS: We analyzed US-born, non-Hispanic whites and Latinos adults (N=49,259) and adult internet users (N=36,214) in the 2015 to 2016 National Health Interview Survey using a binary logistic regression controlling for individual difference level variables. Outcomes were internet use, HISB (health information-seeking online and using a chat group for health information), and patient portal use (using a computer to schedule an appointment, filling a prescription, and communicating with a provider). RESULTS: We found that US-born Mexicans (odds ratio [OR] 0.81, 95% CI 0.66-0.99), foreign-born Mexicans (OR 0.35, 95% CI 0.29-0.42), foreign-born Puerto Ricans (OR 0.62, 95% CI 0.44-0.87), foreign-born Central and South Americans (OR 0.42, 95% CI 0.33-0.53), and foreign-born other Latinos (OR 0.34, 95% CI 0.24-0.49) had lower odds of using the internet than US-born non-Hispanic whites. The relationship between subgroup affiliation and Web-based HISB varied by type of technology. US-born Mexicans (OR 0.77, 95% CI 0.66-0.9), foreign-born Mexicans (OR 0.51, 95% CI 0.43-0.61), foreign-born Central and South Americans (OR 0.53, 95% CI 0.43-0.64), and foreign-born other Latinos (OR 0.56, 95% CI 0.4-0.79) had lower odds of looking up health information online than US-born non-Hispanic whites. Controlling for age, sex, education, income to federal poverty level, and region, foreign-born Central and South Americans (OR 0.61, 95% CI 0.41-0.92) and foreign-born other Latinos (OR 0.26, 95% CI 0.1-0.68) had lower odds of filling a prescription using a computer than US-born non-Hispanic whites. Foreign-born Mexicans (OR 0.51, 95% CI 0.36-0.72) and foreign-born Central and South Americans (OR 0.7, 95% CI 0.5-0.99) have lower odds of emailing a health care provider than US-born non-Hispanic whites. Posthoc analyses were conducted among Mexican-Americans to see if age was significant in predicting Web-based HISB or other patient portal use. We found individuals aged 18 to 30 years had higher odds of using the internet (OR 3.46, 95% CI 2.61-4.59) and lower odds of looking up health information online (OR 0.75, 95% CI 0.58-0.96). A posthoc analysis was conducted among Mexican-Americans to see if nativity predicted Web-based HISB and patient portal use. We found that US-born individuals had higher odds (OR 52.9, 95% CI 1.2-1.93) of looking up health information online compared with foreign-born individuals. CONCLUSIONS: We found Latino subgroups do not use health information channels equally, and attempts to target Latinos should take ethnicity and nativity into account.

"It is like a jungle gym, and everything is under construction": The parent's perspective of caring for a child with a rare disease.

DESCRIPTIVE TITLE: Parents of children with rare diseases face pervasive challenges in meeting medical and social care needs. Existing research on the parents' experience of caring for a child with a rare disease is limited. This paper offers suggestions for better supporting families living with rare disease as well as possible avenues of future research. BACKGROUND: Parents of children with rare diseases face pervasive challenges in meeting medical and social care needs. Existing research on the parent's experience of caring for a child with a rare disease is limited. METHODS: An interpretive phenomenological approach was applied in this inquiry. Fifteen parents of children with rare diseases participated in semistructured interviews. RESULTS: Interpretive thematic analysis revealed that due to the rarity of the disease and an overall lack of knowledge of the disease, there is an increase in the burden on the family in relation to "rarity" in addition to "disability." Four insights were also revealed: (a) Parents often know more about the disease then Health Care providers, and this leads to entanglements in communication and collaboration as experts and parents; (b) there is lack of coordination of care between providers and services caring for children with rare diseases; (c) there is a gap in accessibility to government supports; and (d) due to fragmented care, parents must fill the aforementioned gaps by juggling multiple roles including that of advocate, case manager, and medical navigator. CONCLUSION: This paper offers suggestions for better supporting families living with rare disease as well as possible avenues of future research.

Syrian refugees in Greece: experience with violence, mental health status, and access to information during the journey and while in Greece.

BACKGROUND: Since 2015, Europe has been facing an unprecedented arrival of refugees and migrants: more than one million people entered via land and sea routes. During their travels, refugees and migrants often face harsh conditions, forced detention, and violence in transit countries. However, there is a lack of epidemiological quantitative evidence on their experiences and the mental health problems they face during their displacement. We aimed to document the types of violence experienced by migrants and refugees during their journey and while settled in Greece, and to measure the prevalence of anxiety disorders and access to legal information and procedures. METHODS: We conducted a cross-sectional population-based quantitative survey combined with an explanatory qualitative study in eight sites (representing the range of settlements) in Greece during winter 2016/17. The survey consisted of a structured questionnaire on experience of violence and an interviewer-administered anxiety disorder screening tool (Refugee Health Screener). RESULTS: In total, 1293 refugees were included, of whom 728 were Syrians (41.3% females) of median age 18 years (interquartile range 7-30). Depending on the site, between 31% and 77.5% reported having experienced at least one violent event in Syria, 24.8-57.5% during the journey to Greece, and 5-8% in their Greek settlement. Over 75% (up to 92%) of respondents ≥15 years screened positive for anxiety disorder, which warranted referral for mental health evaluation, which was only accepted by 69-82% of participants. Access to legal information and assistance about asylum procedures were considered poor to non-existent for the majority, and the uncertainty of their status exacerbated their anxiety. CONCLUSIONS: This survey, conducted during a mass refugee crisis in a European Community country, provides important data on experiences in different refugee settings and reports the high levels of violence experienced by Syrian refugees during their journeys, the high prevalence of anxiety disorders, and the shortcomings of the international protective response.

Impact of video on the understanding and satisfaction of patients receiving informed consent before elective inpatient coronary angiography: A randomized trial.

BACKGROUND: Appropriate information about the benefits and risks of invasive procedures is crucial, but limited data is available in this field. The aim of this study was to evaluate the incremental value of a short video about coronary angiography compared with standard information, in terms of patient understanding, satisfaction and anxiety. METHODS: This prospective multicenter study included patients admitted for scheduled coronary angiography, who were randomized to receive either standard information or video information by watching a three-dimensional educational video. After information was delivered, patients were asked to complete a dedicated 16-point information questionnaire, as well as satisfaction and anxiety scales. RESULTS: From 21 September to 4 October 2015, 821 consecutive patients were randomized to receive either standard information (n=415) or standard information with an added educational video (n=406). The information score was higher in the video information group than in the standard group (11.8±2.8 vs 9.5±3.1; P<.001). This result was consistent across age and education level subgroups. Self-reported satisfaction was also higher in the video information group (8.4±1.9 vs. 7.7±2.3; P<.001), while anxiety level did not differ between groups. The variables associated with a higher information score were the use of the educational video, younger age, higher level of education, previous follow-up by a cardiologist, prior information about coronary angiography and previous coronary angiography. CONCLUSIONS: In comparison with standard information, viewing a dedicated educational video improved patients' understanding and satisfaction before scheduled coronary angiography. These results are in favor of widespread use of this incremental information tool.

The role of posttraumatic stress and posttraumatic growth on online information use in breast cancer survivors.

OBJECTIVE: Changes perceived as both positive (eg, posttraumatic growth [PTG]) and negative (eg, posttraumatic stress symptoms [PTSS]) have been associated with intensive Internet use among breast cancer survivors. In this multicenter study, we analyzed the role of PTG and PTSS on the amount of time spent looking for online cancer information, its content, and its psychological impact. METHODS: Posttraumatic stress symptoms and PTG were assessed in 182 breast cancer survivors by using the Post-traumatic Stress Disorder Checklist and Post-traumatic Growth Inventory questionnaires. Subjects also completed a questionnaire about their behavior when looking for online illness-related information (ie, time spent, type of contents, and psychological impact). RESULTS: Posttraumatic stress symptoms positively correlated with the amount of time spent looking for cancer-related information, including both medical and psychosocial content. By contrast, PTG showed no relationships with the amount of time, but with a predominant search for cancer-related psychosocial information. The psychological impact of online information was associated with participants' levels of PTG and/or PTSS. Whereas PTG was related to a decrease of women's hope, PTSS was linked to the perception of being less conscious or inadequately informed about the illness, thereby increasing feelings of distress. CONCLUSIONS: Posttraumatic stress symptoms and PTG show relationships with the amount of time spent online, the type of information accessed online, and the psychological impact of Internet use. Health professionals should prescribe online information according to the psychological response to cancer. There is a need for professional-led online resources to provide patients with timely information as well as support sites to facilitate psychological adjustment.

Online information and support needs of women with advanced breast cancer: a qualitative analysis.

PURPOSE: Women with advanced breast cancer (ABC) face significant adjustment challenges, yet few resources provide them with information and support, and attendance barriers can preclude access to face-to-face psychosocial support. This paper reports on two qualitative studies examining (i) whether information and support-seeking preferences of women with ABC could be addressed in an online intervention, and (ii) how an existing intervention for patients with early stage cancer could be adapted for women with ABC. METHODS: Women with ABC participated in telephone interviews about their information and support-seeking preferences (N = 21) and evaluated an online intervention focused on early-stage cancer (N = 15). Interviews were transcribed and underwent thematic analysis using the framework method to identify salient themes. RESULTS: Participants most commonly sought medical, lifestyle-related, and practical information/support; however, when presented with an online intervention, participants most commonly gave positive feedback on content on coping with emotional distress. Difficulty finding information and barriers to using common sources of information/support including health professionals, family and friends, and peers were reported; however, some women also reported not wanting information or support. All participants evaluating the existing intervention gave positive feedback on various components, with results suggesting an online intervention could be an effective means of providing information/support to women with ABC, given improved specificity/relevance to ABC and increased tailoring to individual circumstances and preferences. CONCLUSIONS: Adaptation of an existing online intervention for early stage cancer appears to be a promising avenue to address the information and support needs of women with ABC.

Does access to an information-based, breast cancer specific website help to reduce distress in young women with breast cancer? Results from a randomised trial.

To assess the effectiveness of a purpose-built information-based website to reduce distress among young women with breast cancer. A total of 337 participants (Intervention Group [IG] n = 202; Usual Care Group [UCG] n = 177) returned the completed baseline questionnaires (T1). Details regarding accessing the website were provided to IG participants. Follow-up questionnaires were completed: (a) 3 months (T2) and (b) 6 months after baseline (T3). Outcomes included anxiety and depression (primary outcomes), quality of life (QoL) and unmet information needs. About 70% of the IG accessed the website, typically only once (median: 1, range 1-15), spending a median of 19 min (range: 1-315) on the site. Mean levels of anxiety and depression did not differ between the two groups at T1, T2 or T3. While improvement in total QoL was greater in the IG than UCG between T1 and T2, QoL scores did not differ between groups at T3. The number of unmet needs did not differ between the two groups at T3. The intervention was not effective in reducing anxiety, or depression in this group of women. As a high number of unmet needs were identified, other strategies for addressing these needs of young women with breast cancer are needed.

Need for information, honesty and respect: patient perspectives on health care professionals communication about cancer and fertility.

BACKGROUND: Individuals affected by cancer report a need for information about fertility from health care professionals (HCPs), in order to inform decision making and alleviate anxiety. However, there is evidence that many health professionals do not engage in such discussions. METHOD: A mixed method design was used to examine the construction and subjective experience of communication with health professionals about fertility in the context of cancer, from the perspective of patients. A survey was completed by 693 women and 185 men, across a range of cancer tumour types and age groups, and in-depth one-to-one interviews conducted with a purposively selected subsample of survey respondents, 61 women and 17 men. The chi square test for independence was used to test for group differences between women and men on closed survey items. Thematic analysis was used to examine the open ended survey responses and interviews. RESULTS: Significantly more women (57%, n = 373) than men (46%, n = 80) (X2(2517) = 6.54, p = .011) reported that they had discussed fertility with a HCP since diagnosis of cancer. Satisfaction with the discussion was reported by 65% (n = 242) of women and 69% (n = 54) (ns) of men. This discussion was reported to have been initiated by the patient or their partner in 44% (n = 165) of women and 47% (n = 37) (ns) of men. In the interviews and open ended surveys three themes were identified: Feeling heard and informed about fertility after cancer: Positive experiences of HCP communication; "I was never given full disclosure": HCP silence or reticence about discussing fertility after cancer, including the sub-theme "Their primary concern is getting me cancer free": Constructions of absence of fertility communication by HCPs; and Confusion and lack of compassion: Unsatisfactory information provision about fertility and cancer. CONCLUSION: Discussion with a HCP about fertility concerns, and satisfaction with the discussion, was associated with reports of lower patient distress, greater knowledge and understanding of the consequences of cancer on fertility, involvement in the decision making process about fertility preservation, and satisfaction with health care.