Introduction
In haemophilia, ever more effective treatment options leading to minimal bleeding make information provision about the disease and its symptoms and when to alert the treatment team increasingly important. However, little is known about how current information provision is perceived and what the needs are.

Aim
Gain in-depth insights into experiences and needs regarding information provision of caregivers of young children with haemophilia, and the perspectives of their healthcare providers (HCPs).

Methods
A qualitative study was conducted including 15 semi-structured interviews with caregivers and seven interviews with HCPs. Purposive sampling ensured a varied sample regarding the child's age, type and severity of haemophilia, and treatment strategy. A comprehensive thematic content analysis was subsequently conducted using several phases of coding.

Results
Three main themes were identified. First, caregivers and HCPs indicated that current disease knowledge and information provision regarding haemophilia varies and could be improved. Both groups underlined the importance of adequate information provision to support decision-making and alleviate anxiety. Second, the need for standardized, centralized and tailored information was expressed, preferably digital. Current information is experienced as fragmented and incomplete, leading to lack of structure and uncertainties. Lastly, information provision cannot exist without additional coaching by the multidisciplinary treatment team and peers.

Conclusion
Both caregivers and HCPs experience unmet needs regarding information provision as currently performed. Empowerment can be provided by standardized, centralized information tailored to disease severity and phase of life. A digital information platform with visual support, could provide a complete, up-to-date, readily available and reliable resource. ... Read more

In this article Reference 10 was incorrect as ‘van der Zwanenburg LC, Koldenhof JJ, Suijkerbuijk KPM, Schellekens MPJ (2024) What patients with advanced cancer experience as helpful in navigating their life with a long-term response: a qualitative study. Support Care Cancer 32(4):222’ and should have been ‘Zwanenburg LC, van der Lee ML, Koldenhof JJ, Suijkerbuijk KPM, Schellekens MPJ (2024) What patients with advanced cancer experience as helpful in navigating their life with a long-term response: a qualitative study. Support Care Cancer. 32(4):222. PMID: 38470541.’ ... Read more

Although the largest increase in melanoma incidence is observed for localised melanoma, little research has been done on its impact. Despite favourable prognoses and relatively short treatment trajectories, diagnosis and treatment may significantly impact life post-treatment. Therefore, the aim of this study was to gain an in-depth understanding of stage I and II melanoma survivors’ experiences resuming life after treatment and their associated survivorship care (SSC) needs. A qualitative focus group study was conducted with 18 stage I or II melanoma survivors, divided over three focus groups with 6 survivors each. Transcripts were analysed through thorough thematic content analysis, using multiple phases of coding. In resuming life, survivors experienced profound initial impacts of disease and treatment, fed by a perceived lack of knowledge and underestimation of melanoma. They faced unexpected physical and emotional effects post-surgery, experiencing mixed feelings from relief to fear and uncertainty. Survivors felt misunderstood, had to adjust their lives, and managed personal and external expectations while experiencing a positive shift in life perspective, leading to a notable difference in life before and after cancer. In terms of SSC needs, survivors stressed the need for tailored information, accessible resources, patient-centered follow-up, and supportive care addressing the total impact of disease and treatment. These findings highlight the importance of improving melanoma awareness and providing holistic SSC not only to advanced, but also to localised melanoma survivors. A tailored survivorship care plan could facilitate access to information and supportive care, helping patients resume their lives. ... Read more