Digital illustration of a child with a butterfly symbolizing hope in front of a Malawian hospital

Hope in Health: How PROMIS Measures Bring Better Cancer Care to Children in Malawi

Mira Elwood in Health & Wellness December 2025 • 5 min read.

"A new study highlights the crucial role of patient-reported outcomes in improving the lives of young cancer patients in sub-Saharan Africa."

In the heart of sub-Saharan Africa, where the battle against childhood cancer is often waged with limited resources, a groundbreaking study is bringing hope to young patients. A recent research article published in Pediatric Blood & Cancer details the successful translation and validation of the Patient-Reported Outcomes Measurement Information System (PROMIS) for children with lymphoma in Malawi. This pioneering work marks a significant step towards incorporating the voices of young patients into their care, ultimately leading to better health outcomes.

For many years, the focus in cancer treatment has been on survival rates. However, improving the health-related quality of life (HRQoL) during and after treatment is also essential. This study demonstrates the power of listening to children's experiences, providing valuable insights into their physical, mental, and social well-being. The study’s findings illuminate the urgent need for tailored interventions and support systems, ultimately improving the lives of young cancer patients.

This article delves into the core of the study, exploring the journey of adapting the PROMIS-25 pediatric measures for use in the Malawian context. It highlights the significant challenges and successes of the translation and validation process, and the crucial importance of the study's results. By the end, you'll understand how this study is not just a research endeavor, but a beacon of hope, and a testament to the transformative impact of patient-centered care.

What are PROMIS Measures, and Why are They Important in Pediatric Cancer Care?

Digital illustration of a child with a butterfly symbolizing hope in front of a Malawian hospital

PROMIS, or the Patient-Reported Outcomes Measurement Information System, is a set of standardized tools designed to assess various aspects of a patient's well-being. These measures go beyond traditional clinical assessments to capture the patient's own experiences, including physical, mental, and social health. In the context of pediatric cancer care, PROMIS tools can provide a more comprehensive view of the child's health.

The PROMIS-25 short form is a particularly valuable tool. This version is composed of 25 questions. It assesses six key domains of HRQoL: mobility, anxiety, depressive symptoms, fatigue, peer relationships, and pain interference. By asking the children or their parents about these areas, healthcare professionals can gain critical insights into the impact of the disease and treatment on the child's daily life.

Comprehensive Assessment: PROMIS tools provide a holistic view of the child's health, encompassing physical, mental, and social aspects.
Patient-Centered Care: By focusing on patient-reported outcomes, care is tailored to the individual's unique needs and experiences.
Improved Communication: PROMIS tools create a common language between patients, families, and healthcare providers, leading to more effective communication.
Research and Improvement: The data collected can be used to evaluate the effectiveness of treatments and interventions, driving continuous improvement in cancer care.

The use of PROMIS measures is especially crucial in low- and middle-income countries (LMICs) like Malawi, where resources may be limited. Understanding the patient experience is essential for providing the best possible care, even in challenging circumstances. The successful implementation of PROMIS in Malawi highlights how even within resource-constrained setting, these instruments can provide a better understanding the needs of the patient.

The Path Forward: Hope and Healing for Children with Cancer in Malawi

The successful implementation of PROMIS in Malawi offers a ray of hope for the future. By providing a voice to children battling lymphoma, and other diseases, this study paves the way for more patient-centered care. The findings will help direct interventions to address the issues in Malawi that are most prevalent. Through this work, there is a shift from simply measuring survival to improving the very quality of life. As the study continues, its impact will be felt across Malawi and serve as an inspiration for similar initiatives worldwide. The future is hopeful for those in Malawi.

About this Article -

This article was crafted using a human-AI hybrid and collaborative approach. AI assisted our team with initial drafting, research insights, identifying key questions, and image generation. Our human editors guided topic selection, defined the angle, structured the content, ensured factual accuracy and relevance, refined the tone, and conducted thorough editing to deliver helpful, high-quality information.See our About page for more information.

This article is based on research published under:

DOI-LINK: 10.1002/pbc.27353, Alternate LINK

Title: Translation, Psychometric Validation, And Baseline Results Of The Patient-Reported Outcomes Measurement Information System (Promis) Pediatric Measures To Assess Health-Related Quality Of Life Of Patients With Pediatric Lymphoma In Malawi

Subject: Oncology

Journal: Pediatric Blood & Cancer

Publisher: Wiley

Authors: Katherine Westmoreland, Bryce B. Reeve, Amy Amuquandoh, Toon Van Der Gronde, Olivia Manthalu, Helena Correia, Christopher Stanley, Salama Itimu, Ande Salima, Mary Chikasema, Paula Ward, Atupele Mpasa, Stella Wachepa, Idah Mtete, Mercy Butia, Mary Chasela, Mary Mtunda, Peter Wasswa, Steven Martin, Nader El-Mallawany Kim, Peter Kazembe, Satish Gopal

Published: 2018-07-17

Everything You Need To Know

What exactly are PROMIS measures, and what aspects of a child's health do they assess in the context of pediatric cancer care?

PROMIS, which stands for Patient-Reported Outcomes Measurement Information System, comprises standardized tools designed to evaluate various facets of a patient's well-being. Unlike traditional clinical assessments, PROMIS measures capture a patient's experiences, encompassing physical, mental, and social health dimensions. In pediatric cancer care, PROMIS tools provide a holistic view of a child's health, allowing healthcare professionals to understand the broader impact of the disease and its treatment on the child's overall quality of life. Specifically, the PROMIS-25 short form includes 25 questions to assess mobility, anxiety, depressive symptoms, fatigue, peer relationships, and pain interference.

How does using PROMIS-25 enhance communication and personalize care for children undergoing lymphoma treatment in Malawi?

PROMIS-25 plays a crucial role in enhancing communication between young lymphoma patients, their families, and healthcare providers in Malawi. By using a standardized tool to assess health-related quality of life (HRQoL) domains, such as mobility, anxiety, depressive symptoms, fatigue, peer relationships, and pain interference, it establishes a common language for discussing the child's experiences. This structured approach ensures that healthcare professionals gain insights into the individual needs and challenges of each patient, enabling tailored interventions and personalized care plans. It helps to make care patient-centered and improves the communication process.

What are some of the unique challenges of translating and validating PROMIS measures for use with children battling lymphoma in a low-resource setting like Malawi, and how were these challenges addressed?

Translating and validating PROMIS measures for use in Malawi involves several unique challenges. Linguistic differences, cultural nuances, and varying levels of health literacy require careful adaptation to ensure the questions are accurately understood and relevant to the local context. Resource limitations in Malawi may impact the feasibility of data collection and the availability of support services. To address these challenges, researchers often employ rigorous translation protocols, involve local experts and community members in the adaptation process, and use qualitative methods to validate the cultural appropriateness of the measures. Despite resource constraints, the successful implementation in Malawi demonstrates that PROMIS tools can still provide valuable insights into the needs of patients and help direct intervention.

Beyond survival rates, why is it important to focus on health-related quality of life (HRQoL) for children undergoing cancer treatment, and how do PROMIS measures contribute to this?

While survival rates are a critical outcome in cancer treatment, focusing on health-related quality of life (HRQoL) is equally important for children. Cancer and its treatments can have significant physical, emotional, and social impacts on a child's life, affecting their ability to participate in everyday activities, maintain relationships, and experience overall well-being. PROMIS measures directly address these aspects by assessing domains such as mobility, anxiety, depressive symptoms, fatigue, peer relationships, and pain interference. By incorporating these patient-reported outcomes into care, healthcare providers can gain a comprehensive understanding of the child's experience and tailor interventions to improve their HRQoL, ensuring they not only survive but also thrive during and after treatment.

How might the successful implementation of PROMIS measures in Malawi serve as a model or inspiration for improving pediatric cancer care in other low- and middle-income countries (LMICs)?

The successful implementation of PROMIS measures in Malawi offers a compelling model for improving pediatric cancer care in other low- and middle-income countries (LMICs). It demonstrates the feasibility and value of incorporating patient-reported outcomes into routine clinical practice, even in resource-constrained settings. The Malawi study highlights the importance of adapting and validating PROMIS measures to ensure cultural relevance and linguistic accuracy. By sharing the lessons learned and best practices from the Malawi experience, other LMICs can adapt these tools to their specific contexts, empowering healthcare providers to better understand and address the unique needs of young cancer patients. This can lead to improved communication, tailored interventions, and ultimately, better health outcomes and quality of life for children battling cancer worldwide.