AYA With MPN Face Psychological Needs That Are Poorly Understood

Between 20% and 30% of AYA with MPN experienced psychological distress warranting assessment and intervention.

Image credit: Diego Cervo - stock.adobe.com

Up to 20% of patients with myeloproliferative neoplasms (MPN) are adolescent and young adults (AYAs) and the population is growing; however, there is a paucity of data on the psychological needs of AYAs with MPN, according to a systematic scoping review published in Leukemia & Lymphoma.¹

Previous research has shown AYAs with cancer can be overlooked² and there is little information on how this population does during treatment and survivorship,³ but they can face unique psychosocial issues that impact their quality of life.⁴

“While the MPN AYA group generally reports a similar symptom burden to the adults with MPN, very little is known about the psychological impact and management of AYA with MPN,” the authors wrote. “Understanding psychosocial issues patients with MPN face are critical given the demands of cancer, and its treatment is often directly counter to the developmental needs of the age group.”

They conducted a systematic scoping review of the research of 16- to 39-year-olds with MPN using a search of Psych Info, MEDLINE, CINAHL, Embase, Web of Science, Scopus, the Cochrane Library, MedRxiv, BioRxiv, Europe PMC, and OSF Preprints. While none of the studies identified were specific to only the AYA cohort, the review included 5 data sources in the final analysis on findings related to fatigue, emotional impact, developmental stage impacts, distress screening tools, and psychological interventions.

Between 20% and 30% of AYA with MPN experienced psychological distress warranting assessment and intervention, according to the review. This number aligns with hematological cancers in general.

Fatigue was one of the challenging symptoms noted with AYAs reporting they didn’t feel like they had the confidence to manage fatigue-related distress. While fatigue impacted their lives and necessitated adjusting work, medical professionals were not considered helpful for handling fatigue. Whether fatigue was related to lifestyle or MPN-related factors was unclear to AYA. Similarly, they were uncertain what was causing their sleep difficulties.

In one study, almost half of patients taking the Patient Health Questionnaire-4 noted their MPN diagnosis impacted their career by requiring them to reduce hours at work or change jobs.

According to studies utilizing psychometric assessment tools to assess psychological distress and quality of life, the median score on the emotional well-being measure of the Functional Assessment of Chronic Illness Therapy – Fatigue Scale was not only below that of the population mean norms but also cancer population norms.

“Our review has identified significant gaps in the literature relating to psychosocial outcomes and interventions for AYA diagnosed with MPN,” the authors wrote.

The low number of AYA with MPN participants across the studies limits the generalizability of the findings from this review, although the subanalysis findings were aligned with other studies of AYA with cancer. Another limitation of the review was the lack of rating of the quality of articles being evaluated.

The authors noted that future research examining the subgroup of AYA should utilize Findable, Accessible, Interoperable, Reusable guidelines for data stewardship. In addition, researchers should publish research protocols and report evidence of public and patient involvement to improve the quality and relevance of research.

“Future research must utilize best practice guidelines in using methodologically appropriate and transparently reported studies to explore the specific psychological needs of the AYA cohort with MPN,” the researchers concluded. “It is critical that we understand the prevalence of distress in this group of MPN patients so that we can appropriately assess, identify, monitor, formulate, and provide appropriate care and treatment for such individuals.”

Reference

1. Houlihan T, Fortune DG, Keohane C, Richards HL. The psychological needs of adolescents and young adults with a diagnosis of myeloproliferative neoplasms: a systematic scoping review of the literature. Leuk Lymphoma. Published online February 7, 2024. doi:10.1080/10428194.2024.2313618

2. Joszt L. Posters highlight need for psychosocial support in adolescent survivors of childhood leukemia. AJMC. September 14, 2021. Accessed March 6, 2024. https://www.ajmc.com/view/posters-highlight-need-for-psychosocial-support-in-adolescent-survivors-of-childhood-leukemia

3. Gavidia M. Spotlighting social, emotional needs in underserved populations with cancer. AJMC. September 14, 2021. Accessed March 6, 2024. https://www.ajmc.com/view/spotlighting-social-emotional-needs-in-underserved-populations-with-cancer

4. Joszt L. AYAs with blood cancers face unique psychosocial issues that impact quality of life. AJMC. August 3, 2018. Accessed March 6, 2024. https://www.ajmc.com/view/ayas-with-blood-cancers-face-unique-psychosocial-issues-that-impact-quality-of-life