Child with lymphoma holding a butterfly, symbolizing hope and resilience in Malawi.

Unlocking Hope: A New Tool to Improve Life Quality for Children with Lymphoma in Malawi

Kai Mendoza monogram
Kai Mendoza in Health & Wellness October 2026 • 4 min read.

"A culturally adapted questionnaire brings children's voices to the forefront, paving the way for better care and support."


In low- and middle-income countries (LMIC), childhood cancer presents a particularly difficult challenge. Limited access to care, increased illness, and decreased survival rates paint a stark picture. But as dedicated healthcare professionals and organizations strive to improve access and optimize treatment, it's crucial that focus extends beyond just survival rates.

Over the last decade, there has been a growing recognition of the importance of understanding how diseases and their treatments affect a patient's overall well-being. This is where patient-reported outcomes (PROs) come in. PROs give us direct insights into a patient's mental, physical, and social health-related quality of life (HRQoL).

Recognizing this need, the National Institutes of Health (NIH) launched the Patient-Reported Outcomes Measurement Information System (PROMIS) network. This initiative aimed to create standardized tools for measuring HRQoL, and these PROMIS instruments have quickly become highly valued in research and clinical settings. However, these tools haven't always been readily available in all languages and cultural contexts. In fact, none of the Bantu African languages spoken in sub-Saharan Africa (SSA) had a validated PROMIS translation – until now.

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Measuring Quality of Life in Malawi

A July 12, 2024 report describes the translation, psychometric validation, and baseline results of PROMIS pediatric measures for assessing health-related quality of life among children with lymphoma in Malawi. A 2024 meta-analysis reports that pediatric patients with hematologic malignancies and survivors are at high risk for decreased health-related quality of life compared with controls. Research on mature B-cell non-Hodgkin lymphoma also examines the frequency and severity of late therapy effects, while the American Cancer Society provides current U.S. statistics for lymphoma in children and teens.

Balancing Cure and Quality of Life

Pediatric Hodgkin lymphoma treatment strategies aim to balance the intensity needed to maintain disease-free survival with the harms of therapy. Because pediatric and adolescent classic Hodgkin lymphomas have high curative potential and multiple standard and emerging therapies, they are considered an important setting for shared decision making. Diagnostic challenges remain, including overlapping pathological, clinical, and molecular features between pediatric-type follicular lymphoma and pediatric nodal marginal zone lymphoma. The role of Epstein-Barr virus is also highlighted in the subclassification of Burkitt lymphoma.

Why is Measuring Quality of Life Important for Children with Lymphoma?

Child with lymphoma holding a butterfly, symbolizing hope and resilience in Malawi.

Historically, healthcare in low-resource settings has understandably focused on survival. But, as survival rates improve, the need to address quality of life becomes increasingly apparent. For children battling lymphoma, the challenges extend beyond the physical symptoms of the disease. The emotional and social impact can be profound, affecting their ability to attend school, maintain friendships, and simply enjoy being a child.

The research team recognized that to truly improve the lives of children with lymphoma in Malawi, they needed a way to accurately assess their HRQoL. This would allow them to:

  • Identify specific areas of need: Pinpoint which aspects of HRQoL are most affected (mobility, anxiety, pain, etc.).
  • Tailor interventions: Develop targeted support programs to address these specific needs.
  • Monitor progress: Track how HRQoL changes over the course of treatment and into survivorship.
  • Advocate for resources: Provide data to support the need for increased resources dedicated to psychosocial care.
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Survival Does Not End the Burden

A Swedish and Finnish survivor study used different identification methods: Sweden relied on the National Childhood Cancer Registry, while Finland used hospital records because of registry access limitations. The World Health Organization reports that access to effective diagnosis, essential medicines, pathology, blood products, radiation therapy, technology, and psychosocial and supportive care remains variable and inequitable worldwide. Quality-of-life assessment can use the widely validated Pediatric Quality of Life Inventory Generic Core Scales, which includes child self-report from age 5 and parent-proxy forms. Long-term follow-up remains important because childhood acute lymphoblastic leukemia survivors have reported risks of early mortality and multiple treatment-related morbidities.

Lymphoma Across Childhood and Adolescence

Lymphoma is the most common cancer in teenagers aged 15 to 19, according to Doernbecher Children's Hospital. It accounts for about 8% of cancers diagnosed in children younger than 15. These figures show that lymphoma affects both adolescents and younger children, although its prominence differs by age group.

To achieve this, the team embarked on a rigorous process of translating and adapting the PROMIS-25 pediatric short form into Chichewa, one of the major languages spoken in Malawi. The goal was to ensure that the questionnaire was not only linguistically accurate but also culturally relevant and easy for children to understand.

A Brighter Future for Pediatric Cancer Care in Malawi and Beyond

This study represents a significant step forward in the effort to provide holistic care for children with cancer in Malawi and other resource-limited settings. By giving children a voice and prioritizing their well-being, healthcare providers can work towards a future where all children with cancer have the opportunity to not only survive but also thrive.

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Prediction and Better Survivorship

A study analyzing lymphoma data from 1975 to 2018 compared survival trends among 7,871 pediatric and 226,211 adult patients. It identified risk factors for pediatric lymphoma survival, developed a predictive nomogram, and used machine learning to predict long-term lymphoma-specific mortality risk. UCSF Pediatrics reports that recent treatments can now cure up to 95% of certain lymphoma subtypes and stages. Despite improved survival, transition to adult care and communication of patients' specific long-term needs remain important.

Listening to Children and Families

Research on pediatric lymphoma patients in Malawi focuses on translating, validating, and establishing baseline results for PROMIS pediatric measures of health-related quality of life. A related report describes health-related quality-of-life data from sub-Saharan Africa as scarce and identifies translation and validation of the Pediatric Patient-Reported Outcome Measurement Information System as an important step. Together, these sources support measuring patients' reported experiences rather than relying only on clinical outcomes.

How these measures fit the wider evidence

A separate review notes that survival for children and adolescents with cancer exceeds 80% in many high-income countries and is 37% globally. These broad survival figures provide context for why outcomes beyond survival matter, but they are not results for the children who completed PROMIS-25.[1]

What the evidence leaves to clarify

  • How well do the PROMIS-25 questions cover the concerns that matter to children with cancer? A review found scarce evidence on content validity for available child cancer quality-of-life measures, so consistent scores alone do not settle whether the questions are sufficiently comprehensive.[2] [3]
  • What might affect use of these scores in routine care? Clinicians have reported barriers including limited training, a lack of clinically meaningful cutpoints, and uncertainty about measure validity; the reliability result does not resolve those implementation questions.[1] [3]

Sources

  1. A Review of Patient-Reported Outcome Measures in Childhood Cancer (pmc.ncbi.nlm.nih.gov)
  2. A critical evaluation of the content validity of patient-reported outcome measures assessing health-related quality of life in children with cancer: a systematic review (pmc.ncbi.nlm.nih.gov)
  3. 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 patie (pubmed.ncbi.nlm.nih.gov)

About this Article -

Written with AI assistance from published research, and reviewed by the Mystum team. See our About page for more information.

Everything You Need To Know

1

What are patient-reported outcomes, and why are they important for children with lymphoma?

Patient-reported outcomes, or PROs, are direct insights into a patient's well-being. They measure things like mental, physical, and social health-related quality of life (HRQoL). This is important because it allows healthcare providers to understand the impact of a disease and its treatment from the patient's perspective, not just from clinical data. For children with lymphoma, PROs can reveal how the disease affects their ability to attend school, maintain friendships, and enjoy normal childhood activities. By understanding these impacts, interventions can be tailored to meet specific needs.

2

What is the PROMIS network, and why is it significant in the context of patient well-being?

The PROMIS (Patient-Reported Outcomes Measurement Information System) network, launched by the National Institutes of Health (NIH), aims to create standardized tools for measuring HRQoL. These PROMIS instruments have become valuable in research and clinical settings because they provide a common framework for assessing patient well-being. The significance lies in enabling comparisons across different studies and populations. However, the original versions may not be suitable for all languages and cultural contexts, which led to the described study to translate it into other languages.

3

Why is it important to measure health-related quality of life (HRQoL) for children with lymphoma?

Measuring health-related quality of life, or HRQoL, is important because it goes beyond simply tracking survival rates. It focuses on how a disease and its treatment affect a patient's overall well-being, including their physical, emotional, and social functioning. This is especially critical for children with lymphoma, as the disease can have a profound impact on their ability to participate in normal activities and maintain a sense of normalcy. By measuring HRQoL, healthcare providers can identify specific areas where children need support and tailor interventions to improve their overall quality of life.

4

What is the PROMIS-25 pediatric short form, and what is the significance of translating and adapting it into Chichewa?

The PROMIS-25 pediatric short form is a specific tool designed to measure HRQoL in children. The significance in translating and adapting this questionnaire into Chichewa, a major language spoken in Malawi, is ensuring that it is both linguistically accurate and culturally relevant. By adapting the tool, the research team ensured that children in Malawi could easily understand and respond to the questions, providing valuable data on their well-being. This is a huge step forward, as previously there wasn't a validated PROMIS translation in any of the Bantu African languages spoken in sub-Saharan Africa (SSA).

5

What are the implications of adapting the PROMIS-25 into Chichewa for pediatric cancer care in Malawi?

Adapting the PROMIS-25 into Chichewa allows healthcare providers to identify the specific needs of children with lymphoma in Malawi, develop targeted support programs, monitor the progress of these programs, and advocate for increased resources dedicated to psychosocial care. The implications are that healthcare providers can now use the data to improve the lives of children in other resource-limited settings. Giving the children a voice in their own care, can work towards a future where all children with cancer have the opportunity to not only survive but also thrive.

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