Mental health and rare diseases

Previous research has shown that depression and anxiety are more common in people with rare diseases. Now a new study published in the United Kingdom may shed light on how to help patients and caregivers.

The study, Published in BMC Health Services ResearchThey used online surveys to ask 1,231 patients and 564 caregivers about their mental health status and whether they thought their mental health needs were being addressed. Not surprisingly, mental health is a concern, with more than 90 percent reporting feeling anxious, stressed or depressed at some point. Earlier Evaluation study 39 percent of people with rare diseases are diagnosed with a major depressive disorder and 44 percent with an anxiety disorder at some point in their lives.

In new BMC research, many felt the health care system could do more to support them:

• 46 percent said they were never asked about their mental health or emotional well-being.
• 39 percent said their mental health needs were being met, while 62 percent said their physical needs were being met.
• 23 percent said their doctors and support staff think mental health is as important as physical health.
• 80 percent of survey respondents feel they are not taken seriously by medical professionals, and half said they sometimes feel medically curious.

Respondents suggested changes that healthcare teams could take to support patients with rare diseases:

• Ask about a patient’s mental health at a doctor’s visit.
• Help patients and caregivers find services like counseling and support groups.
• Help patients navigate access to these services, some of which may be expensive or have waiting lists.

At the provider level, asking about mental health and being ready to refer people to resources can go a long way, especially when someone is first diagnosed, the study authors say. Better training for therapists can help them feel more confident in recommending ways to improve mental health.

The study explored steps patients and caregivers can take, such as bringing up the topic of mental health at a doctor’s visit, asking about resources; seeking advice if necessary; and to foster a sense of empowerment by joining support groups and rare disease organizations.

The news wasn’t all bad in the survey’s findings: 60 percent of respondents said they felt optimistic and valued and close to others.

See the full study