| Popis: |
Background Rare disease patients and carers report significant impacts on mental health but this has not been extensively studied. We explored the experiences of UK-based individuals through an online survey, and offer recommendations for policy and practice developed with a multi-stakeholder workshop. Results In total 1,355 patients and 571 carers responded to the survey.Due to their rare condition, the majority of respondents had felt worried/anxious (95%); stressed (93%); low/depressed (90%); emotionally exhausted (88%). Thirty-six percent of patients and 19% of carers had had suicidal thoughts.Challenges that are particular to rare conditions and which negatively affect mental health included limited knowledge of the condition amongst healthcare professionals (88%), not being believed or taken seriously by healthcare professionals (80%), and lack of available information about the condition (76%). Only 23% of respondents felt healthcare professionals considered mental health as equally important as physical health. Almost half of patients (46%) and carers (48%) reported never having been asked about their mental health, or that of the person they care for, by healthcare professionals.Forty-six percent of respondents had received professional psychological support; the most common reason for not having accessed professional psychological support was that it had not been suggested (41%).Fifty-nine percent of respondents had accessed sources of additional emotional support, such as patient groups, with the majority (75%) having found this support themselves. With input from our multi-stakeholder workshop we developed recommendations for healthcare professionals to be supported to effectively and sensitively recognise and address patients’ and carers’ mental health needs; and for service level coordination of care to integrate professional psychological support with rare disease services.Conclusions Living with a rare disease substantially impacts mental health. Many of the drivers of poor mental health reflect issues specific to managing rare conditions. To meet existing UK government commitments, there should be a focus on empowering healthcare professionals who treat rare disease patients and on integration of mental health support with rare disease services. |
