|LETTER TO EDITOR
|Year : 2020 | Volume
| Issue : 4 | Page : 851-852
Measuring quality of life in Indian children with cancer: Addressing an unmet need
Shuvadeep Ganguly, Sameer Bakhshi
Department of Medical Oncology, Dr. B.R.A. Institute Rotary Cancer Hospital, All India Institute of Medical Sciences, New Delhi, India
|Date of Submission||06-Oct-2020|
|Date of Decision||15-Oct-2020|
|Date of Acceptance||17-Oct-2020|
|Date of Web Publication||25-Dec-2020|
Department of Medical Oncology, Dr. B.R.A. Institute Rotary Cancer Hospital, All India Institute of Medical Sciences, New Delhi - 110 029
Source of Support: None, Conflict of Interest: None
|How to cite this article:|
Ganguly S, Bakhshi S. Measuring quality of life in Indian children with cancer: Addressing an unmet need. Cancer Res Stat Treat 2020;3:851-2
With the improving survival in children with cancer, there is a growing interest in the assessment of their quality of life (QOL) and addressing the associated issues, both during and after the treatment for cancer. QOL measurement has also been increasingly recognized as a meaningful end point in clinical trials and is often considered as a measure of benefit of an experimental intervention.
A plethora of validated QOL questionnaires exist, both generic and disease-specific, that can be utilized for assessing the QOL in children with cancer. However, often, they may not be suitable for use in the Indian patients because of the significant cultural difference, which considerably influences the perception of QOL, both by the patients and their parents/caregivers.
In this regard, the recently developed 31-item questionnaire, Cancer Institute Pediatric Oncology QOL Questionnaire-31, by Shunmugasundaram et al., addresses an important unmet need., The scale is easy, can be self-administered, and is less time consuming, making it appropriate for use in India, where time and workforce constraints are significant challenges in the outpatient settings. The authors have also rigorously followed and adequately described the methodology of construction and validation of the instrument. Various domains of QOL have been covered, and the methodology properly followed the consensus of the Scientific Advisory Committee of the Medical Outcomes Trust pertaining to the appropriate methods for developing QOL instruments. The final instrument demonstrated good reliability, discriminant validity, and internal consistency. In this regard, the authors could also have considered performing a test–retest reliability assessment and an external validity measurement using some other validated “standard” instrument, which could have made the construct much more rigorous and complete.
The developed instrument is specifically targeted toward patients aged between 10 and 17 years who can read and write in English. This specific context will limit the use of the instrument in its current form. Although the authors have stated that the English language is commonly taught to children in India, at least as a second language, as per the Education Report 2017, only 53%–60% of the children aged between 14 and 18 years can read simple English sentences, and 20% of them are still unable to comprehend the meaning. This makes the need to translate the instrument in regional languages and their validation more imperative for the easy adoption of the scale for routine use.
The instrument comprises only the self-reported items, uniform for the targeted age group. However, the parents'/caregivers' perception regarding the health-related QOL of the children is equally important, more so when the patients are younger or not in a state to properly complete the self-administered questionnaires. Often, the QOL reported by the parents differs significantly from that reported by the patients themselves; this could be due to the different reasoning and response styles. While the authors have stated that children in Asia are less likely to convey their emotional needs to their parents, we believe that in India, the deep involvement of the parents and even the other members of the family in the treatment process, makes it less likely for the children to not share their emotional needs. In fact, often, parents/caregivers may provide a better perspective of the QOL issues in children and, therefore, their perspective needs to be assessed with at least equal importance, if not more.
The authors have also developed a common instrument for assessing the QOL in children who are on active treatment as well as those who have completed their therapy. More than 50% of their validity and reliability assessment cohort, included children who had completed their therapy. However, the QOL issues in cancer survivors are very unique (such as concerns about relapse, education loss, and marriage/job); hence, acute treatment-related items (such as pain/vomiting) are of little relevance to them. The authors could have considered making two different versions, with a basic generic version addressing the needs of these two separate yet related populations.
Pediatric QOL questionnaires often have multiple versions targeted to specific age groups. While this instrument is targeted toward the age group of 10–17 years, the understanding, reasoning, and response abilities of the children may differ even within this age group. Moreover, this uniform construct limits the adaptability of the instrument in younger children, where QOL assessment holds similar importance.
The development and validation of a culturally appropriate instrument for assessing the QOL issues in Indian children with cancer was the need of the hour, which has been addressed by the authors through this commendable work. However, before ready adoption of the instrument for routine clinical use, validated translation into regional languages as well as incorporation of the parents' perspective appears imperative. Incorporation of specific survivorship issues and development of another version addressing younger children are also warranted.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| References|| |
Klassen AF, Strohm SJ, Maurice-Stam H, Grootenhuis MA. Quality of life questionnaires for children with cancer and childhood cancer survivors: A review of the development of available measures, support. Care Cancer 2010;18:1207-17.
Shunmugasundaram C, Elangovan V, Radhakrishnan V. Construction and validation of a quality of life tool for pediatric patients of Indian origin with cancer: A single-center prospective study. Cancer Res Stat Treat 2020;3:445-54. [Full text]
Krishnamurthy R, Sarin R. Quality of life of Indian children with cancer: Measuring what matters. Cancer Res Stat Treat 2020;3:566-8. [Full text]
Lohr KN. Assessing health status and quality-of-life instruments: attributes and review criteria. Q Life Res 2002;11:193-205.
Bansal M, Sharma KK, Bakhshi S, Vatsa M. Perception of Indian parents on health-related quality of life of children during maintenance therapy of acute lymphoblastic leukemia: A comparison with siblings and healthy children. J Pediatr Hematol Oncol 2014;36:30-6.