What are the issues of highest concern to older men with hemophilia?
According to an “Aging People with Hemophilia” survey conducted by the National Hemophilia Foundation (NHF) from December 2016 through February 2017, they are:
- Worsening of joint disease and joint pain
- Insurance that fully covers hemophilia
- Planning for retirement
For the online survey, 110 respondents rated on a five-point scale how concerned they were about 22 issues, both at present and for the future. Issues were grouped in five categories: insurance and future planning; function and mobility; health and medical; social support; and mental health.
Joint disease and pain
While 28% of the men said “worsening of joint disease and joint pain” was among their greatest concerns now, that figure jumped to 49% when thinking about future concerns. Ongoing joint pain was an issue for 86% of the respondents.
“The survey shows that most older men are dealing with pain all the time whether they talk about it or not, but as providers we haven’t done a good enough job of addressing pain control for this older patient population,” says hematologist Barbara Konkle, MD, associate director of the Washington Center for Bleeding Disorders at Bloodworks Northwest, in Seattle, and a member of NHF’s Aging Working Group.
To Dana Francis, MSW, a social worker at the University of California San Francisco Hemophilia Treatment Center and a member of the Aging Working Group, the findings on joint pain offer one glaring takeaway. “Some men are using high doses of opioids to deal with their pain, but nobody talks much about it, and it needs to be a conversation that’s above the radar,” says Francis.
When survey respondents rated their concern regarding “having insurance that fully covers hemophilia treatment, including all the replacement factor you need,” 37% said it was among their greatest concerns now. That figure nearly doubled (62%) when thinking about concerns for the future.
Those results did not surprise Francis. “There’s a desperate need for financial security in old age, and right now every person with a bleeding disorder is very worried about what will happen with their health insurance,” he says.
Concerns about retirement
Another top concern is planning and saving for the future, with only a relatively small difference between the present (34%) and the future (42%). Only 45% of the men said they had saved enough money to maintain their standard of living after retirement.
To Konkle, a key issue regarding future planning involves the spouses of men with hemophilia. “Losing a partner has more consequences for men with hemophilia because (the partner) may enable care,” she says. “We have older patients whose spouses infuse them, so if a man with hemophilia loses his partner or his partner becomes disabled, then he loses that support.”
A mental health disconnect
Even though a significant number of men reported having mental health issues, these issues were among the lowest-ranking concerns of the respondents. The survey revealed that 37% of men said they were “not at all concerned” about “living with anxiety and/or depression and the effects on daily living” now, and that dropped to just 25% when thinking about the future.
Those conflicting statistics “tell us everything we need to know about the lack of education and awareness about mental health issues among men,” says Francis. “Lots of men suffer from depression, but they may never even call it that.”