Patients with myeloproliferative neoplasms (MPNs) experience various symptoms that can affect quality of life, such as fatigues and depression. Acknowledging that patients can benefit from open dialogue based on symptom change, education and different support options is important for care teams to know, according to research published in BMC Cancer.
Rebecca Testi, a nurse practitioner at Hackensack Meridian Health, explains how care teams can help reassure their patients with MPN about specific ways to improve quality of life through beneficial resources.
Are these psychosocial needs often unmet within patients? If so, why is that?
I think a ton of the time they’re unmatched. I think with any rare disease, they don’t get a ton of attention. It’s not something you see on TV read about a ton. I think solid tumor cancers and patients (have) just a lot more common. With these liquid tumor patients, it’s so rare. I don’t think there’s a lot of places for them to turn.
There are support groups. I think that’s huge. The Leukemia & Lymphoma Society has a really good MPN support group. But I think getting patients to know about it and normalize utilizing them is a bit of a challenge. I do think often depression in general and care to cancer patients goes on managed, which is a big issue, because I think a lot of people feel like, of course, depression comes with cancer. And that’s often true, but I think we as providers could definitely be better about addressing it. Yes, it’s normal to feel. But how can we help you with the depression so you can live more of a normal life?
What resources are available for patients with MPN for those needs?
Most cancer centers have really good social workers on staff that are designated to that particular division. I know where I work, we have a dedicated social work for all liquid tumor patients, most institutions will be able to connect you with a peer-to-peer support group. If patients are agreeable, we’ll often connect one MPN patient with another who’s willing to have their information shared so that they can talk to each other share their feelings. And then another thing that’s really important for these people. We have caregiver support groups. Their families can interact and share how having a loved one with this defeat disease affects them, which, I think, is often just as hard on the family members and caregivers as it is on the patient. Especially because nausea, vomiting, that’s concrete, you can treat it. But with fatigue and depression, it’s hard to help somebody with those symptoms.
What advice would you give to patients with MPM who have psychosocial needs?
I would encourage them to, first and foremost, always utilize their provider as a venting point and someone they can go to and trust, but I encourage all of them to talk with either a therapist or social worker. I think when you bottle up these feelings that are so poorly understood, you’re bound to explode, get more depressed and just feel very alone. I advise them to connect with their family members connect with other people going through the illness.
I think the best way to combat fatigue, it seems counterintuitive, but it’s like exercise and getting out there. I like, in getting to know my patients, always ask them what they like to do, because you really have to acknowledge them as more than just their illness, they have a whole life outside of having MPN. I get to know them. I think the more you get to know a patient, the easier it is to advise them and give advice on how to feel better, knowing that you yourself have no idea what it feels like to have MPN.
This transcript has been edited for clarity and conciseness.
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