OBJECTIVE: Cancer is associated with an urgent need for understandable and reliable information, which is often not satisfied by information available online. Therefore, as part of the PIKKO project, a web-based knowledge database (WDB) was introduced to provide cancer patients with quality-assured, evidence-based information. This paper aims to provide insights into the usage (Who? How? What?) and the effects regarding health literacy of the WDB.
METHODS: A patient survey and automatically generated logfile data were evaluated. Two user groups, patients and patient navigators (PNs), were compared.
RESULTS: The 13 PNs were responsible for 1/3 of all accesses over the entire duration of the project. The 413 patients used WDB twice on average and spent an average of 12 min per session online (PNs: 9 min per session, more frequently). The top 3 topics of interest were \'therapy\', \'nutrition\' and \'carcinogenesis\' for the patients, and \'therapy\', \'naturopathy\' and \'legal regulations/support\' for the PNs. Of the patients surveyed, 69% said that WDB was helpful in making informed decisions, 76% found the information they wanted and 90% thought WDB was an appropriate way to provide information.
CONCLUSIONS: Our WDB provided important information about cancer and its treatment on a digital way both, to patients and PNs. In routine cancer care, the WDB can improve health literacy and informed decision-making.
BACKGROUND: This study was retrospectively registered in the German Clinical Trial Register under DRKS00016703 (21 Feb 2019, retrospectively registered). https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00016703.

OBJECTIVE: Does a purpose-designed Decision Aid for women considering elective egg freezing (EEF) impact decisional conflict and other decision-related outcomes?
CONCLUSIONS: The Decision Aid reduces decisional conflict, prepares women for decision-making, and does not cause distress.
BACKGROUND: Elective egg-freezing decisions are complex, with 78% of women reporting high decisional conflict. Decision Aids are used to support complex health decisions. We developed an online Decision Aid for women considering EEF and demonstrated that it was acceptable and useful in Phase 1 testing.
METHODS: A single-blind, two-arm parallel group randomized controlled trial was carried out. Target sample size was 286 participants. Randomization was 1:1 to the control (existing website information) or intervention (Decision Aid plus existing website information) group and stratified by Australian state/territory and prior IVF specialist consultation. Participants were recruited between September 2020 and March 2021 with outcomes recorded over 12 months. Data were collected using online surveys and data collection was completed in March 2022.
METHODS: Females aged ≥18 years, living in Australia, considering EEF, proficient in English, and with internet access were recruited using multiple methods including social media posts, Google advertising, newsletter/noticeboard posts, and fertility clinic promotion. After completing the baseline survey, participants were emailed their allocated website link(s). Follow-up surveys were sent at 6 and 12 months. Primary outcome was decisional conflict (Decisional Conflict Scale). Other outcomes included distress (Depression Anxiety and Stress Scale), knowledge about egg freezing and female age-related infertility (study-specific measure), whether a decision was made, preparedness to decide about egg freezing (Preparation for Decision-Making Scale), informed choice (Multi-Dimensional Measure of Informed Choice), and decision regret (Decision Regret Scale).
RESULTS: Overall, 306 participants (mean age 30 years; SD: 5.2) were randomized (intervention n = 150, control n = 156). Decisional Conflict Scale scores were significantly lower at 12 months (mean score difference: -6.99 [95% CI: -12.96, -1.02], P = 0.022) for the intervention versus control group after adjusting for baseline decisional conflict. At 6 months, the intervention group felt significantly more prepared to decide about EEF than the control (mean score difference: 9.22 [95% CI: 2.35, 16.08], P = 0.009). At 12 months, no group differences were observed in distress (mean score difference: 0.61 [95% CI: -3.72, 4.93], P = 0.783), knowledge (mean score difference: 0.23 [95% CI: -0.21, 0.66], P = 0.309), or whether a decision was made (relative risk: 1.21 [95% CI: 0.90, 1.64], P = 0.212). No group differences were found in informed choice (relative risk: 1.00 [95% CI: 0.81, 1.25], P = 0.983) or decision regret (median score difference: -5.00 [95% CI: -15.30, 5.30], P = 0.337) amongst participants who had decided about EEF by 12 months (intervention n = 48, control n = 45).
CONCLUSIONS: Unknown participant uptake and potential sampling bias due to the recruitment methods used and restrictions caused by the coronavirus disease 2019 pandemic. Some outcomes had small sample sizes limiting the inferences made. The use of study-specific or adapted validated measures may impact the reliability of some results.
CONCLUSIONS: This is the first randomized controlled trial to evaluate a Decision Aid for EEF. The Decision Aid reduced decisional conflict and improved women\'s preparation for decision making. The tool will be made publicly available and can be tailored for international use.
BACKGROUND: The Decision Aid was developed with funding from the Royal Women\'s Hospital Foundation and McBain Family Trust. The study was funded by a National Health and Medical Research Council (NHMRC) Project Grant APP1163202, awarded to M. Hickey, M. Peate, R.J. Norman, and R. Hart (2019-2021). S.S., M.P., D.K., and S.B. were supported by the NHMRC Project Grant APP1163202 to perform this work. R.H. is Medical Director of Fertility Specialists of Western Australia and National Medical Director of City Fertility. He has received grants from MSD, Merck-Serono, and Ferring Pharmaceuticals unrelated to this study and is a shareholder of CHA-SMG. R.L. is Director of Women\'s Health Melbourne (Medical Practice), ANZSREI Executive Secretary (Honorary), RANZCOG CREI Subspecialty Committee Member (Honorary), and a Fertility Specialist at Life Fertility Clinic Melbourne and Royal Women\'s Hospital Public Fertility Service. R.A.A. has received grants from Ferring Pharmaceuticals unrelated to this study. M.H., K.H., and R.J.N. have no conflicts to declare.
BACKGROUND: ACTRN12620001032943.
UNASSIGNED: 11 August 2020.
UNASSIGNED: 29 September 2020.

OBJECTIVE: The study aims to investigate factors influencing parents\' satisfaction with hospital care for children with craniosynostosis during hospitalization for surgery.
METHODS: A mixed-methods study with a convergent, parallel design was used. Ninety-five parents responded to the Swedish Pyramid Questionnaire for Treatment, a 25-item questionnaire with six quality domains. In addition, 20 parents were interviewed about their experiences. Frequencies were calculated, and content analysis was used to analyze free-text comments and transcribed interviews.
RESULTS: Parents\' assessment of the overall quality of care was high (mean 87%, range 10-100%). They were most satisfied in the domain staff attitudes and less satisfied with information routines and participation. Content analysis of the interviews gave two overarching themes: Factors that parents experienced as facilitating good quality of care and Factors that parents experienced as impeding good quality of care.
CONCLUSIONS: Parents were generally satisfied with the care provided, and interviews captured parents´ views on important factors. Staff attitudes affected parents\' perception of quality of care.
CONCLUSIONS: Clear information and dialogue as well as making parents feel they are part of their child\'s team can result in higher satisfaction, and allowing families to stay together in the hospital can ease the hospitalization experience. Using a theoretical model can help in suggesting relevant caring actions based on parents\' reported care experiences.

UNASSIGNED: There is growing concern around the use of sodium nitrite (SN) as an emerging means of suicide, particularly among younger people. Given the limited information on the topic from traditional public health surveillance sources, we studied posts made to an online suicide discussion forum, \"Sanctioned Suicide,\" which is a primary source of information on the use and procurement of SN.
UNASSIGNED: This study aims to determine the trends in SN purchase and use, as obtained via data mining from subscriber posts on the forum. We also aim to determine the substances and topics commonly co-occurring with SN, as well as the geographical distribution of users and sources of SN.
UNASSIGNED: We collected all publicly available from the site\'s inception in March 2018 to October 2022. Using data-driven methods, including natural language processing and machine learning, we analyzed the trends in SN mentions over time, including the locations of SN consumers and the sources from which SN is procured. We developed a transformer-based source and location classifier to determine the geographical distribution of the sources of SN.
UNASSIGNED: Posts pertaining to SN show a rise in popularity, and there were statistically significant correlations between real-life use of SN and suicidal intent when compared to data from the Centers for Disease Control and Prevention (CDC) Wide-Ranging Online Data for Epidemiologic Research (⍴=0.727; P<.001) and the National Poison Data System (⍴=0.866; P=.001). We observed frequent co-mentions of antiemetics, benzodiazepines, and acid regulators with SN. Our proposed machine learning-based source and location classifier can detect potential sources of SN with an accuracy of 72.92% and showed consumption in the United States and elsewhere.
UNASSIGNED: Vital information about SN and other emerging mechanisms of suicide can be obtained from online forums.

BACKGROUND: Care partners of people with serious illness experience significant challenges and unmet needs during the patient\'s treatment period and after their death. Learning from others with shared experiences can be valuable, but opportunities are not consistently available.
OBJECTIVE: This study aims to design and prototype a regional, facilitated, and web-based peer support network to help active and bereaved care partners of persons with serious illness be better prepared to cope with the surprises that arise during serious illness and in bereavement.
METHODS: An 18-member co-design team included active care partners and those in bereavement, people who had experienced serious illness, regional health care and support partners, and clinicians. It was guided by facilitators and peer network subject-matter experts. We conducted design exercises to identify the functions and specifications of a peer support network. Co-design members independently prioritized network specifications, which were incorporated into an early iteration of the web-based network.
RESULTS: The team prioritized two functions: (1) connecting care partners to information and (2) facilitating emotional support. The design process generated 24 potential network specifications to support these functions. The highest priorities included providing a supportive and respectful community; connecting people to trusted resources; reducing barriers to asking for help; and providing frequently asked questions and responses. The network platform had to be simple and intuitive, provide technical support for users, protect member privacy, provide publicly available information and a private discussion forum, and be easily accessible. It was feasible to enroll members in the ConnectShareCare web-based network over a 3-month period.
CONCLUSIONS: A co-design process supported the identification of critical features of a peer support network for care partners of people with serious illnesses in a rural setting, as well as initial testing and use. Further testing is underway to assess the long-term viability and impact of the network.

BACKGROUND: While tailored information might have the potential to motivate stroke survivors to make essential lifestyle changes and improve long-term outcomes, how this varies among different stroke populations is not yet fully understood.
METHODS: From November 2022 to May 2023, stroke survivors in the UK, who were clinically stable, participated in a community-based, descriptive cross-sectional study. Participants rated several information themes on a Likert scale from one to five, indicating the relevance of each information group to them. Data were analysed using Wilcoxon and chi-squared tests on SPSS. Descriptive statistics were employed for examining the preferred information delivery method, timing, personnel, and frequency.
RESULTS: Seventy survivors, with an average age of 67 ± 19 (61% males), were recruited. Survivors emphasised the importance of symptoms, risk factors, and recovery information during hospital stay, while medication and lifestyle change information were more significant in the community. Subgroup analysis revealed distinct patterns: First-time stroke survivors highlighted the importance of social and financial support (acute phase median Likert score 3, chronic phase median Likert score 4; p < 0.01), while those with prior strokes emphasised information on driving and working after stroke (acute phase median Likert score 4, chronic phase median Likert score 3; p < 0.05). Survivors recruited after six months of stroke prioritised knowledge of carer support in the community (acute phase median Likert score 3.5, chronic phase median Likert score 4; p < 0.01).
CONCLUSIONS: Survivors\' information needs differ depending on factors such as the recovery phase, type of stroke, time since diagnosis, and the presence of a previous stroke. Considering these factors is essential when developing or providing information to stroke survivors.

BACKGROUND: Respiratory ailments, encompassing a spectrum of disorders, are a leading cause of mortality and morbidity in children, with pneumonia being particularly significant, accounting for 16% of child mortality. To ensure timely engagement with healthcare services, it is imperative to instill awareness through Information, Education, and Communication (IEC) initiatives targeting mothers of children under five. The primary objective of this pilot study is to assess the feasibility of a community-based intervention on health-seeking behaviour, knowledge, and practice measures concerning the management and prevention of pneumonia in children.
METHODS: The pilot study mirrored the main study\'s procedures in two villages, Bhuvanahalli and Gavanahalli, each randomly assigned as either an experimental or a control group. We selected 12 mothers with children under the age of five who had community-acquired pneumonia, employing a straightforward random technique, with six mothers from each group. These mothers were interviewed using a structured questionnaire focusing on health-seeking behaviour, knowledge, and practices related to the management and prevention of pneumonia. Mothers in the experimental group received a community-based intervention, specifically an educational set focusing on health-seeking behaviour, knowledge, and practice measures concerning the management and prevention of pneumonia in children, while those in the control group continued with their routine practices. We collected post-test data from the mothers in both groups at the 2nd, 4th, and 6th months of the intervention. The data analysis was conducted using the IBM SPSS Statistics for Windows, Version 28 (Released 2021; IBM Corp., Armonk, New York) software. The Mann-Whitney test and Kruskal-Wallis analyses indicated a notable and statistically significant shift in health-seeking behaviour, knowledge, and practices pertaining to the management and prevention of pneumonia in children as a result of the community-based educational intervention implemented in the experimental group (P<0.05).
CONCLUSIONS: Community-based intervention is crucial to preventing mortality and morbidity in children. The findings of the pilot study affirm its feasibility and lay a strong foundation for further investigation and implementation.

OBJECTIVE: Cancer itself and its treatment have a multifaceted impact on patients\' daily lives. The aim of the study was to determine unmet non-medical needs among Polish cancer patients.
METHODS: Survey research using a 23-item Needs Evaluation Questionnaire (NEQ) was carried out among 1062 cancer patients from different regions of Poland. Quantitative and qualitative analyses were performed.
RESULTS: The quantitative analysis showed that 48% of the NEQ items (11/23) were expressed as unmet needs by at least half of patients. Unmet information needs were indicated by patients most often: information about their diagnosis, exams, treatment, future condition, funding and economic support. Cancer patients would like to get more attention from medical staff. Unmet needs were most frequently expressed by respondents who were men, with a lower level of education, living in village, pensioners. Qualitative analysis showed that each need may be understood in a variety of different ways across the cohort. Some patients added comments that the completing NEQ helped them to notice their non-medical needs.
CONCLUSIONS: Polish cancer patients have some unmet non-medical needs, especially informative needs.

OBJECTIVE: To explore the experience of primi- and multiparous women with planned singleton upright breech births.
METHODS: We conducted face-to-face, in-depth interviews with five primiparous and five multiparous women who underwent a physiological breech birth at one hospital in Norway and analyzed the data using Giorgi\'s descriptive phenomenological method.
RESULTS: The phenomenon of women\'s experiences with physiological breech birth yielded four main constituents: \"Mental preparedness and control\", \"The importance of shared decision-making and sufficient information\", \"Trust and the many \'faces\' of birthing staff\", and \"\'I actually did it!\': Coping and control in the upright breech position\". The significance of readiness, the influence of previous experiences and information, and the establishment of trust in midwives and gynecologists emerge as dominant themes. The sense of co-determination, control, and mastery is also highlighted.
CONCLUSIONS: Our findings underscore the pivotal role of personal attributes in fostering mental preparedness when confronted with unforeseen aspects of childbirth. Notably, women\'s experiences with upright breech birth vary; while some perceive it as an ideal birth, others find it more challenging. Factors such as unpreparedness, lack of information, diminished co-determination, and loss of control negatively impact birth experiences. This study\'s findings underscore the significance of tailoring maternity care to individual needs and improving information sharing. These measures are paramount for optimizing women\'s experience during upright breech births.

We investigated the involvement of community members in response to the Ebola Virus Disease (EVD) epidemic in the North Kivu and Ituri provinces of the Democratic Republic of Congo. This cross-sectional study, conducted using mixed methods of data collection, included a uniformly structured questionnaire survey, which was administered to 800 randomly selected adults (aged ≥ 18 years). Further, we used qualitative tools of inquiry-focus group discussions (FGD) and in-depth interviews (IDI)-to guide the context of the information collected in the survey. Community leaders, religious leaders, and Ebola survivors were interviewed using the IDI guide, while young men (≤ 30 years), young women (≤30 years), adult community males (<30 years), and adult community females (<30 years) were in separate FGD sessions. The results revealed that the urban area was the most affected by the epidemic (79.2%) compared to 20.8% in rural areas. The χ2 calculated was 18.183 (P<0.001). Community members exhibited varying degrees of involvement in response to the EVD epidemic in the two provinces. Community members were mostly engaged in information dissemination. However, they believe they could have contributed more if they had been fully engaged. These findings were derived from the qualitative data. The study contributes to evidence on how community involvement could help response to public health events globally, hence this study provides valuable insights for future public health interventions and response.