Table 10 Wraparound psychosocial cluster recommendations

PS1. Monitor the psychosocial health and wellbeing of all individuals with TSC. TSC is associated with a very significant impact on the wellbeing of individuals. The psychosocial health and wellbeing of children, adolescents, and adults with TSC should therefore be monitored systematically, especially in those who are more severely affected by TSC manifestations. This should include considerations of self-esteem, family stress, relationship difficulties (e.g., with siblings or parents), as well as the ability to connect with others in the community or to progress in their school, work, or career. Psychosocial screening may include direct observation, standardized instruments, and reports from family members or other caregivers

PS2. Monitor the psychosocial functioning of all family members who live with TSC. Caregivers and family members of individuals with TSC also experience a significant burden on their health and wellbeing. For example, they are more likely to have mental health problems (e.g., depressive disorder or coping difficulties) than the general population. For this reason, the health and wellbeing of families who live with TSC should also be monitored systematically and comprehensively. This should include considerations of self-esteem, family stress, relationship difficulties (e.g., between siblings, parent–child, or parent-to-parent difficulties). In addition, very high levels of stress can lead to difficulties for families to connect with others in their community and may impede the ability of caregivers to progress in their own education, work, or career

PS3. Provide integrated and well-coordinated care to families who live with TSC. Pursuing integrated care with well-coordinated services could result in improved quality of care and outcomes, reduced healthcare costs, and increased family wellbeing. This type of care can be found at expert TSC networks, TSC centers, or TSC clinics. In contexts where expert TSC services or systems are not available, the appointment of one person to act as “care/clinical coordinator” (to maintain an overview of the trajectory and needs of an individual with TSC and their family and who can help to coordinate all aspects of care) is highly recommended and can have beneficial effects on health and reduce healthcare expenses

PS4. Comprehensive family-centered care should include psychosocial interventions and practical support. Where individuals with TSC and/or their family members have psychosocial needs, practical supports, and psychosocial interventions (e.g., psychological therapies) should be provided. For example, when high levels of stress are observed in the family, service providers should assess the psychological and social needs of families and help them with targeted supports that could help to reduce stressors (e.g., provision of care support, respite or relationship support) and tools to increase psychological resilience (e.g., through psychological support)

PS5. Focus on and measure the quality of life of individuals with TSC and their families. A well-coordinated, multi-disciplinary approach to the management of TSC can improve the quality of life of individuals and caregivers who live with TSC. Individual and family quality of life should therefore be monitored informally and using standardized tools. Higher levels of quality of life are associated with increased social interests and active participation, less negative feelings and concerns, and fewer restrictions on physical activities

PS6. Provide dedicated support to individuals and caregivers to optimize their employment and professional lives. The employment and professional lives of those with TSC and their caregivers are likely to be affected by TSC, as evidenced by reduced work productivity, increased absenteeism, and higher levels of impairment in their daily life activities. Young individuals with TSC should be supported with access to facilities providing study guidance. Adults with TSC should have access to career counseling, assistance seeking work, and coaching at work. For caregivers, this may include discussions about the option to reduce working hours or workload, or finding alternative financial support to allow caregivers to provide optimal assistance to their family while maintaining an optimal work/life balance

PS7. Care for the caregivers. Given the impact of TAND on individuals and caregivers, and given the fundamental role of caregivers and families as expert partners in the life journey of people with TSC, supporting and empowering caregivers and ensuring their wellbeing is paramount. Individuals with TSC can only achieve optimal outcomes if we also look after the wellbeing of those who care for them. Careful monitoring of caregiver quality of life (including using standardized measurements) and dedicated time during clinical consultations to discuss family and caregiver wellbeing can have significant positive effects on family quality of life