Psychosocial Impact of Rare Cancers

Rare cancers are a heterogeneous group of malignant tumors, defined by an annual incidence of less than 6 per 100,000 people, and classified into 10 domains (e.g., head and neck, digestive, thoracic cancers). One in five cancer patients is diagnosed with a solid rare cancer.

While rare cancers are less well-known than common types like breast or colorectal cancer, they represent a significant portion of the cancer burden. For example, rare cancers are associated with poorer 5-year survival rates (49% vs. 63% for common cancers). Additionally, patients with a rare cancer report worse psychosocial functioning, e.g., heightened uncertainty, isolation, and negative work outcomes, due to factors like diagnostic delay, misdiagnoses, lack of information, and dissatisfaction with care. These issues contribute to unmet supportive care needs and lower quality of life.

In this Research Topic, we aim to explore the psychosocial impact of rare cancers, emphasizing the experiences of patients, caregivers, and healthcare professionals navigating these often-overlooked diagnoses. While psycho-oncological interventions are advancing, they are often developed with common cancers in mind and may not adequately address the complexities of rare cancer care. Yet, psychosocial consequences and quality of life should not depend on the rarity of a tumor type. Therefore, with this collection, we ultimately aim to raise awareness, inform clinical practice, guide future research, and influence policy toward more inclusive, person-centered psycho-oncological care for individuals affected by a rare cancer.

To gather insights into the 'psychosocial impact of rare cancers,' we welcome articles addressing, but not limited to, the following themes:

• Diagnostic delay, lack of adequate treatments and evidence-based clinical guidelines
• Unmet information needs, communication gaps, and shared decision making
• Cultural and sociodemographic disparities, health literacy, other forms of vulnerability
• Social isolation and loneliness, uncertainty, anxiety, and coping strategies
• Employment and financial challenges, work ability, adverse work outcomes
• Patient advocacy and empowerment in navigating healthcare
• Access to specialized care, and overall organization of rare cancer care
• Integrating psycho-oncology services in the rare cancer care pathway
• Telemedicine and artificial intelligence
• Tailored supportive care programs, online communities and (digital) peer support
• Long-term psychosocial effects and survivorship, and palliative care
• Caregiver psychological burden

Submissions may include original research, reviews, case studies, theoretical contributions, commentaries and current perspectives, offering new insights regarding 'psychosocial impact of rare cancers.'