Tag Archives: quality of life

Engulfment Reduces Patient Quality of Life in MPNs

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Jonathan Goodman, MPhil
Publish Date

Engulfment is a major factor affecting patient quality of life (QoL) among individuals diagnosed with myeloproliferative neoplasms (MPNs), according to research published in the European Journal of Oncology Nursing.

Psychological guidance aiming to mitigate the feeling of being overwhelmed by disease — the notion of engulfment in clinical medicine — is essential for improving QoL, the authors noted.

Although it is recognized that MPNs can drastically and negatively affect patient QoL, there is little understanding of the ways this occurs. For this longitudinal study, researchers evaluated psychosocial adjustment to living with MPNs, including essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF), with a focus on 4 factors: problem-solving coping, self-management, illness identity, and resilience.

Overall, 338 patients were enrolled. The researchers evaluated measurements of the 4 key factors at baseline and 6 months thereafter using established questionnaires, including the EORTC-QLQ-C30 for QoL measurements.

At enrolment, the average age was 62.8 years, the time since diagnosis was 7.7 years, and 63.6% of patients were female sex; 38.2%, 45.3%, and 16.6% of patients had been diagnosed with ET, PV, and MF, respectively.

The findings of this study indicate that psychosocial adjustment is important for QoL in patients with MPN, especially when adjustment is not optimal.

Analysis of the collected data suggested that II-subscale engulfment most strongly and negatively affected patient QoL (beta, 0.37; P <.001); this variable remained significant after the inclusion of control variables in the model, though the signal was less pronounced (beta, 0.16; P < .05).

Moreover, baseline QoL (beta, 0.32, P <.001) a wait-and-see treatment option (beta, 0.11, P <.05), and symptom burden at the second timepoint (beta, 0.36, P < .001) were all predictive of QoL.

“The findings of this study indicate that psychosocial adjustment is important for QoL in patients with MPN, especially when adjustment is not optimal,” the study authors wrote in their report. “Furthermore, the impact of MPN symptoms on QoL should not be underestimated.”

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The role of psychosocial adjustment in the quality of life of patients with myeloproliferative neoplasms

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March 7, 2025

A.A.M. Eppingbroek, L. Lechner, E.C. Bakker, M.D. Niijkamp, M.A. de Witte, C.A.W. Bolman

Abstract

Purpose

Myeloproliferative neoplasms (MPNs) can cause a high symptom burden that negatively affects quality of life (QoL). The way patients deal with their disease and how this impacts their QoL is important to understand, yet virtually unknown. The aim of this study is to investigate whether and how psychosocial adjustment affects QoL in MPN patients.

Methods

A longitudinal study was conducted in 338 MPN patients to investigate whether and how baseline measurements of psychosocial adjustment could predict QoL outcomes six months later. Psychosocial adjustment to illness was operationalized by: coping, self-management, resilience and illness identity (II). We tested the hypotheses that high scores on respectively problem-solving coping, self-management, resilience, II-subscales acceptance and enrichment, and low scores on II-subscales rejection and engulfment are associated with high scores on QoL. We performed a multiple hierarchical regression analysis including sociodemographic and disease-related variables and baseline QoL as control variables.

Results

II-subscale engulfment had the most pronounced negative impact on QoL (β.47, p<.001). After the introduction of the control variables, the effect of engulfment remained statistically significant (β.16, p<.01). Additionally, baseline QoL (β.32, p<.001), treatment option wait-and-see (β.11, p<.05), and MPN symptom burden at T2 (β.36, p<.001) demonstrated significance. The other variables measuring psychosocial adjustment did not relate significantly to QoL.

Conclusion

The findings of this study illustrate the significant adverse effect of engulfment on patients’ QoL, underscoring the importance of providing psychosocial guidance to mitigate the patients’ feelings of being overwhelmed by the disease.

4 Ways Polycythemia Vera Can Affect Your Quality of Life — and What You Can Do About It

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By Jessica Migala
Published on February 14, 2025
by Walter Tsang, MD
Just like any chronic health condition, polycythemia vera (PV) can have a negative impact on your everyday life. Research has shown that PV is associated with a lower quality of life in measures, including health, cognitive, emotional, and physical functioning.

Symptoms such as fatigue, itchy skin, and mental health issues can make it difficult to function, but they can be managed. “This is a chronic condition that people can live with,” says Jacqueline S. Garcia, MD, a medical oncologist at Dana-Farber Cancer Institute in Boston.

Here are some common challenges of living with PV and ways to cope, so you can stay healthy and live well as you manage this condition.

1. Fatigue Can Interfere With Daily Activities

Fatigue is one of the most common symptoms of PV. “Polycythemia vera is a blood disorder that stems from an error in the bone marrow,” says Dr. Garcia. As a result, bone marrow overproduces red blood cells, causing the body to use up your iron supply. This results in iron deficiency, which leads to fatigue, she explains.
Another factor that can contribute to fatigue is phlebotomy treatment, which is a procedure that involves drawing blood to reduce blood cells and blood volume. A common side effect of this treatment is increased fatigue and iron deficiency, according to Garcia.

The degree of fatigue can vary from one person to another and depend on age, menopausal status, other health conditions — such as cardiovascular disease or diabetes — and more factors, says Garcia.

What to do about it: When it comes to polycythemia vera fatigue, research found that fatigue was a bigger problem for people who had a higher BMI, continued to drink alcohol or use tobacco, and didn’t exercise.

Maintaining healthy lifestyle habits may help you feel more energized every day. For instance, Garcia recommends exercising in moderation, as long as you have your doctor’s okay and don’t push yourself if you feel faint.

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