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BackgroundTo date, little research has examined the quality of life and cancer-associated needs of bladder cancer patients. The objective of the current study was to assess the quality of life (QoL), informational needs, and supportive care needs (SCN) in a large sample of muscle invasive (MIBC) and non-muscle invasive (NMIBC) bladder cancer survivors across the treatment trajectory (newly diagnosed and undergoing treatment, post-treatment follow-up, and treatment for advanced/recurrent disease).MethodsQuestionnaires were distributed to a convenience sample of patients registered with Bladder Cancer Canada, the Princess Margaret Cancer Centre, or The Ottawa Hospital. Eligibility criteria included being > 18 years of age, English-speaking, and diagnosed with bladder cancer. The questionnaire included an adapted tool to measure informational needs, and validated measures for QoL (Bladder Utility Symptom Scale, BUSS) and SCN (Cancer Survivors’ Unmet Needs Measure, CaSUN). QoL scores and unmet needs were calculated and compared between disease groups and cancer trajectory groups.Results and limitationsOf the 1126 surveys distributed, 586 were completed (response = 52%). Mean age was 67.3 ± 10.2 years, and 401 participants (68.7%) were male. The mean QoL score (BUSS) for the sample was 78.1 ± 17.9 (median 81.7). Respondents with MIBC had significantly lower QoL scores compared to NMIBC. Further, scores differed across the cancer phase groups with the follow-up surveillance group having significantly higher QoL scores compared to the newly diagnosed and advance/recurrent disease groups. The ten most highly ranked informational needs were from the medical, physical, and practical domains. Eighty-eight percent (95% CI 85–91%) of respondents reported at least one SCN, with a median of 12. Over half of the participants (54%, 95% CI 49–59%) had at least one unmet need and 15% had ≥ 10 unmet needs. Newly diagnosed participants had the highest number of unmet needs.ConclusionWe found that the number of unmet supportive care needs and quality of life differed across cancer trajectory and disease groups. Future efforts should focus on the development and evaluation of tailored resources and programs to address the needs of people diagnosed and treated for BC.

Purpose The transition towards adult-focused healthcare comprises a complex process requiring careful, individualized guidance of adolescents with congenital heart disease (CHD). Detailed data on their preferences regarding disease-related information and acquirable transitional skills are mostly lacking. We examined the preferences of CHD adolescents in the early transition stage. Methods A cross-sectional descriptive study was performed with adolescents recruited from a transition program. Two questionnaires assessing needs for information and transitional skills were used. Only questionnaires completed in the early transition stage were included. Results Forty-nine adolescents participated (mean age 15.9 ± 1.2 years, 43% girls). 59% requested information about their heart and previous and/or future surgeries/interventions, 45% about sports and medication, and a maximum of 27% about psychosocial topics. More girls than boys requested surgical information (76% versus 46%; p  = 0.04). Adolescents with severely complex CHD more often requested information about medication than those with moderately complex CHD (63% versus 28%; p  = 0.02). Older adolescents were less likely to request surgical information (OR = 0.53; 95%CI [0.26–0.88]; p  = 0.03). Up to 83% of the adolescents perceived their skills as insufficient, but less than 14% was interested in acquiring skills.     Conclusion : Adolescents were mainly interested in medical topics, followed by lifestyle information. The informational needs tended to decrease with age. Timely gauging individual needs and delivering information, ideally in the early teens, appear important when providing person-tailored transitional care in CHD. Paradoxically, although the transitional skills were low-perceived, there was limited motivation to improve them. This paradox requires further investigation to better tailor transition interventions.      Clinical trial registration : Not applicable. What is Known: • Transition towards adult life and care requires careful patient guidance. A person-tailored approach is strongly encouraged. However, details on preferences regarding disease-related information and transitional skills are scarce in adolescents with CHD. What is New: • This study showed that adolescents with CHD in early transition mainly need medical-related information. Their informational needs tend to decrease with age necessitating timely gauging for interest and delivering information. Adolescents report a low need to acquire transitional skills despite low self-esteemed skills levels.

Background Parkinson’s disease (PD) significantly impacts the health-related quality of life of affected individuals and their relatives. In order to support the affected individuals and their families in coping with PD, it is essential to offer comprehensive information about their experiences. A comprehensive understanding of their lived experiences with the disease, the healthcare system, applied self-management strategies and their needs is considered crucial for developing a PD support program. Therefore, we aimed to explore the lived experiences and support needs of individuals with PD and their relatives in Germany. Methods This non-interventional, qualitative study conducted an explorative status quo and needs assessment. It generated knowledge through semi-structured focus groups and interviews with individuals with PD at various disease stages and their relatives. The interviews were digitally recorded, transcribed verbatim, and analysed using content analysis. Results Fifty-two individuals with PD and 29 relatives participated in eight focus groups and 13 paired and 13 individual interviews. Four themes with corresponding subthemes emerged: (1) experiences, revealing individuals’ experiences around their diagnosis and with disease-specific care provision; (2) management support offers, clarifying who provides support and the type of support offered; (3) self-management, including comprehensibility, meaningfulness and manageability; and (4) future needs, differentiating between deficits and needs. Most participants expressed a sense of abandonment when obtaining self-management strategies and mastering their lives with PD, often referred to as ‘life 2.0’. They identified the lack of structured and adequate provision of information, system orientation and social awareness. Conclusions In Germany, there is an urgent need for a comprehensive PD care program that addresses the needs of individuals with PD and their relatives from the start of their care trajectory. It could assist individuals in gaining a comprehensive understanding of the disease, obtaining self-management strategies, building a support network, and becoming experts in self-managing their disease. Moreover, it may positively influence their care trajectory and reduce burdens, such as overburdening, fear of progression, and health anxiety. Trial Registration German Clinical Studies Register ( https://www.drks.de/DRKS00030090 , No. DRKS00030090, Date of registration: 15.12.2022).

Background BRCA 1/2 alterations increase females’ lifetime breast cancer risk to 40 – 90%, ovarian cancer to 10 – 60%, and males’ lifetime prostate cancer risk to ~ 10 – 25%. Psychosocial issues such as heightened distress can, therefore, occur in this population. This study aimed to explore the subjective experiences and needs of the BRCA 1/2 alteration population in navigating cancer risk reduction measures. Method This study aimed to explore the experiences and identify the needs of 18 BRCA 1/2 alteration carriers, recruited through strategic sampling. A public and patient panel ( N  = 6) collaborated on study development. Data were analysed using reflexive thematic analysis. Results Two themes were identified: (i) Healthcare Services as a Burden to Navigate, and (ii) Burden Experienced Through Interactions with Healthcare Professionals. Results indicated uncertainty regarding care pathways, alongside a lack of relevant information. Participants felt unsupported by healthcare professionals, and as though healthcare professionals often perceive them as a burden. Conclusions These findings suggest that the quality of interactions in healthcare systems are of relevance to the BRCA 1/2 alteration population, and that uncertainty surrounding access to services and information is prevalent. The establishment of specialist hereditary cancer clinics could reduce such burden.

Background As new therapies for Duchenne muscular dystrophy (DMD) are entering the market, shared decision making (SDM) will become increasingly important. Therefore, this study aimed to understand (1) Belgian stakeholders’ knowledge and perceptions of SDM in DMD treatment decision making, (2) the current state of SDM implementation in DMD in Belgium, examining the role of all involved parties, and (3) the barriers and facilitators for SDM in DMD in the Belgian context. Methods In this qualitative study, semi-structured interviews with the multidisciplinary team (MDT) of individuals with DMD ( n  = 18) and caregivers thereof ( n  = 11) were conducted in Belgium. Qualitative data was analyzed thematically using the framework method. Results Most caregivers were unfamiliar with the term SDM, while MDT members were aware of it but struggled to define it consistent with existing literature. Despite acknowledging some drawbacks, participants valued SDM as an important process in DMD care, noting its presence in current practice. However, both MDT members and caregivers sometimes questioned the necessity of SDM due to limited treatment options available. Consequently, decision making predominantly relied on (child) neurologists sharing information and seeking consent from caregivers and individuals with DMD for a proposed treatment. Participants highlighted the important role of the MDT, with each professional contributing its unique expertise to SDM. To reduce existing barriers and enhance the SDM process, participants called for clear and transparent information regarding different treatment options, including clinical trials, and detailed information on how treatments might affect patients’ daily life. Conclusion This study identified an increased need for easily understandable information, particularly regarding DMD care in general, but also about clinical trials covering new and emerging therapies. Developing specific evidence-based tools could support stakeholders’ understanding of this information, thereby enhancing implementation of the SDM process in DMD care. Further, as the treatment landscape of DMD evolves, it will become increasingly important for patients to be supported by an MDT, as they can provide information on clinical trials (e.g., study coordinators), emotional support (e.g., psychologists, nurses), and decisional guidance (e.g., neurologist).

Purpose To analyze demand for information and advice as well as medical, psychological, and social needs of adolescents and young adults (AYAs) and older patients (non-AYA) after hematopoietic stem cell transplantation (HSCT). Methods A questionnaire was sent to 100 HSCT recipients comprising n  = 50 AYAs (aged 19–39 years) and n  = 50 non-AYAs (> 39 years). The questionnaire covered the categories: (a) patient characteristics; (b) need for advice, on medical, psychological, and social care topics; (c) medical, psychological, and social needs, and (d) preferred forms and channels of information. Results The return rate was 65%. 62.5% of patients indicated medical needs; 41.1% psychological needs, and 64.9% had needs concerning social issues. Among medical aspects, aftercare was important to both groups. Nutrition was of highest interest for AYA, while non-AYAs identified fatigue and vaccination as their most pressing concerns. Body shape/sexuality and relaxation techniques were the most common psychological issues for AYA, while coping strategies were important for both cohorts. Family, relationship and friends were of less interest in both groups. Rehabilitation and premature retirement were of highest interest for both cohorts. The preferred mode of communicating advice was one-to-one conversation in a quiet environment as opposed to informational sessions. Conclusion Despite well-established aftercare programs following HSCT, many patients describe unmet needs regarding medical, psychological, and social policy issues. AYA and non-AYA differ in informational needs after HSCT, and, therefore, age-appropriate informational materials are necessary. Particularly AYA may profit from information covering body-shape/sexuality and nutrition, while both cohorts require information covering coping strategies and aftercare.

Background and Aims Inflammatory bowel disease (IBD) is a chronic digestive disease that has a detrimental effect on the quality of life of IBD patients. This study aims to identify the informational needs and design the essential informational needs for a smartphone application for the self‐management of IBD. Methods This study was conducted in two stages and the informational needs of the patients were extracted in a questionnaire designed in three separate sections and given to 120 patients with UC and 60 patients with CD. Results After a literature review and analysis of patient responses, it was found that Knowledge of the disease, Medication, Educational information, Complications, Diet & Nutrition, and Lifestyle habits are among the most important domains of informational needs of inflammatory bowel disease patients. Conclusion Patients with IBD have many informational needs, and in this study, identifying these needs, can help improve the quality of life of these patients and be of interest to healthcare providers, designers, and developers of applications.

Background Women diagnosed with breast cancer undergoing a mastectomy often have the option to undergo breast reconstruction (BR). BR decisions are complex and have considerable impact. We developed a patient decision aid (pDA) to support patients’ BR decision-making. Here, we assess patients’ and physicians’ use of the BR pDA and their views on the barriers and facilitators for widespread implementation. Methods Participants completed a questionnaire, and back-end data of the pDA was analyzed. Results Of 116 eligible patients, 113 patients accessed the BR pDA (median age: 50 years and 50% were highly educated. Most patients (72%) were satisfied with the pDA and 74% would recommend the BR pDA to other women facing the same choice. Patients’ preferences regarding how much, what kind and how to present information varied. Plastic surgeons ( N  = 22; 71% response) were satisfied with the pDA. Their key factors for implementation included the perceived match between information and clinical practice, costs, impact on patients, and support from peers and management for the tool. Conclusions As the BR pDA was highly valued by its end users, the identified factors for implementation should be taken into account.

Aim: The purpose of this study was to explore the experiences of pregnant women who suffer the stressful effects of preeclampsia and eclampsia through pregnancy, delivery, and postpartum. Methods: A descriptive exploratory approach was adopted to gather in-depth data from women diagnosed with preeclampsia and eclampsia during pregnancy from February to March 2022. Purposive sampling was used to enlist 12 participants from a Municipal Hospital in the Ahafo region of Ghana. Data were analyzed thematically following Braun and Clark approach. Results: The study found that women had strong negative emotional reactions after being diagnosed with preeclampsia or eclampsia. They frequently felt guilty, angry, scared, in denial, or disbelief about their condition. Many women held mistaken beliefs about the diseases (they misconstrued eclampsia to be epilepsy) and isolated themselves, mainly because of false perceptions and stigma around their illness in the community. Participants expressed unfulfilled needs for informational and emotional support. The information they received about their condition was insufficient, contradictory, and confusing. Some women also felt pressured into having cesarean deliveries without enough discussion or say in the decision-making process. Conclusion: These findings reveal important psychosocial impacts of preeclampsia/eclampsia and gaps in condition-specific education and empathetic, patient-centered communication. Improving provider knowledge and counseling skills along with community awareness may help address these unmet needs among Ghanaian women facing this threat to maternal health.

Pregnancy-related death is on the rise in the United States, and there are significant disparities in outcomes for Black patients. Most solutions that address pregnancy-related death are hospital based, which rely on patients recognizing symptoms and seeking care from a health system, an area where many Black patients have reported experiencing bias. There is a need for patient-centered solutions that support and encourage postpartum people to seek care for severe symptoms. We aimed to determine the design needs for a mobile health (mHealth) patient-reported outcomes and decision-support system to assist Black patients in assessing when to seek medical care for severe postpartum symptoms. These findings may also support different perinatal populations and minoritized groups in other clinical settings. We conducted semistructured interviews with 36 participants-15 (42%) obstetric health professionals, 10 (28%) mental health professionals, and 11 (31%) postpartum Black patients. The interview questions included the following: current practices for symptom monitoring, barriers to and facilitators of effective monitoring, and design requirements for an mHealth system that supports monitoring for severe symptoms. Interviews were audio recorded and transcribed. We analyzed transcripts using directed content analysis and the constant comparative process. We adopted a thematic analysis approach, eliciting themes deductively using conceptual frameworks from health behavior and human information processing, while also allowing new themes to inductively arise from the data. Our team involved multiple coders to promote reliability through a consensus process. Our findings revealed considerations related to relevant symptom inputs for postpartum support, the drivers that may affect symptom processing, and the design needs for symptom self-monitoring and patient decision-support interventions. First, participants viewed both somatic and psychological symptom inputs as important to capture. Second, self-perception; previous experience; sociocultural, financial, environmental, and health systems-level factors were all perceived to impact how patients processed, made decisions about, and acted upon their symptoms. Third, participants provided recommendations for system design that involved allowing for user control and freedom. They also stressed the importance of careful wording of decision-support messages, such that messages that recommend them to seek care convey urgency but do not provoke anxiety. Alternatively, messages that recommend they may not need care should make the patient feel heard and reassured. Future solutions for postpartum symptom monitoring should include both somatic and psychological symptoms, which may require combining existing measures to elicit symptoms in a nuanced manner. Solutions should allow for varied, safe interactions to suit individual needs. While mHealth or other apps may not be able to address all the social or financial needs of a person, they may at least provide information, so that patients can easily access other supportive resources.