Caregiver-Reported Reasons and Outcomes of Treatment Default among Pediatric Oncology Patients at a Tertiary Care Hospital in Pakistan: Pediatric Cancer Treatment Default in Pakistan

Aimen Gull; Rahat Ul Ain; Mahwish Faizan; Shazia Riaz; Waqar Mushtaq; Luqman Iqbal; Sana Gull

doi:10.54393/pjhs.v6i6.3132

Authors

Aimen Gull Department of Pediatric Hematology Oncology, University of Child Health Sciences, Children’s Hospital, Lahore, Pakistan
Rahat Ul Ain Department of Pediatric Hematology Oncology, University of Child Health Sciences, Children’s Hospital, Lahore, Pakistan
Mahwish Faizan Department of Pediatric Hematology Oncology, University of Child Health Sciences, Children’s Hospital, Lahore, Pakistan
Shazia Riaz Department of Pediatric Hematology Oncology, University of Child Health Sciences, Children’s Hospital, Lahore, Pakistan
Waqar Mushtaq Department of Pediatric Hematology Oncology, University of Child Health Sciences, Children’s Hospital, Lahore, Pakistan
Luqman Iqbal Department of Pediatric Hematology Oncology, University of Child Health Sciences, Children’s Hospital, Lahore, Pakistan
Sana Gull Department of Pediatric Hematology Oncology, University of Child Health Sciences, Children’s Hospital, Lahore, Pakistan

DOI:

https://doi.org/10.54393/pjhs.v6i6.3132

Keywords:

Pediatric Oncology, Treatment Default, Financial Barriers, Caregiver Challenges, Treatment Adherence

Abstract

Despite the availability of free care, many children in Pakistan fail to complete cancer therapy, leading to poor outcomes and increased mortality. Objective: To determine reasons and outcomes of pediatric cancer patients defaulting treatment at tertiary care hospital in Pakistan. Methods: This descriptive cross-sectional study was conducted at Pediatric Hematology/Oncology unit of Children Hospital, Lahore. Total 82 pediatric oncology patients (<16 years) who started treatment but defaulted at any stage between 1st January and 30th June 2024 were included. Caregivers were interviewed regarding default reasons, and relevant clinical data were analyzed using SPSS version 27.0 for descriptive statistics. Results: Most frequently reported contributing factors were financial issues (100%), out-of-pocket expenses (98.8%), long travel distance (92.7%), and poor socioeconomic status (91.5%). Family-related challenges included other responsibilities (89%), parental job issues (84.1%), poor understanding of disease (81.7%), and lack of family support (63.4%). Additional reasons included large family size (72%) and family pressure to abandon treatment (29.3%). Patient-related causes were faith-based healing (50%), perceived long treatment duration (31.7%), consent withdrawal (25.6%), and fear of surgery (18.3%). System-related barriers included treatment unavailability (11%) and dissatisfaction with care (7.3%). Upon return, 54.3% were eligible only for palliative care, 25.6% resumed curative treatment, 14.8% expired, 3.7% were cured, and 2.5% were lost to follow-up. Conclusion: Treatment default in pediatric oncology is driven by financial, social, and systemic challenges. Overcoming these obstacles is essential to enhance treatment adherence and improve patient outcomes.

References

Junkins CC, Kent E, Litzelman K, Bevans M, Cannady RS, Rosenberg AR. Cancer across the ages: a narrative review of caregiver burden for patients of all ages. Journal of Psychosocial Oncology. 2020 Aug; 38(6): 782-98. doi: 10.1080/07347332.2020.1796887.

World Health Organization. Research and development landscape for childhood cancer: a 2023 perspective. World Health Organization; 2023.

Tsimicalis A, Arora RS, Bagai P, Ranasinghe N, Zubieta M. Patient‐led research and Advocacy Efforts. Cancer Reports. 2022 Jun; 5(6): e1657. doi: 10.1002/cnr2.1657.

Johnston WT, Erdmann F, Newton R, Steliarova-Foucher E, Schüz J, Roman E. Childhood cancer: Estimating regional and global incidence. Cancer Epidemiology. 2021 Apr; 71: 101662. doi: 10.1016/j.canep.2019.101662.

Hofmarcher T, García AM, Wilking N, Lindgren P. The disease burden and economic burden of cancer in 9 countries in the Middle East and Africa. Value in Health Regional Issues. 2023 Sep; 37: 81-7. doi: 10.1016/j.vhri.2023.05.005.

Ehrlich BS, McNeil MJ, Pham LT, Chen Y, Rivera J, Acuna C et al. Treatment-related mortality in children with cancer in low-income and middle-income countries: a systematic review and meta-analysis. The Lancet Oncology. 2023 Sep; 24(9): 967-77. doi: 10.1016/S1470-2045(23)00318-2.

Benedetti DJ and Marron JM. Ethical challenges in pediatric oncology care and clinical trials. InEthical challenges in cancer diagnosis and therapy 2021 May; 149-173. doi: 10.1007/978-3-030-63749-1_11.

Chagaluka G, Afungchwi GM, Landman L, Njuguna F, Hesseling P, Tchintseme F et al. Treatment abandonment: A report from the collaborative African network for childhood cancer care and research-CANCaRe Africa. Pediatric Blood & Cancer. 2021 Dec; 68(12): e29367. doi: 10.1002/pbc.29367.

Khowaja MA, Ahmad A, Altaf S, Anwar S, Faizan M, Ghafoor T et al. Using Research Capacity Enhancement to Develop and Implement National Standard-of-Care Treatment Protocols in Pakistan. Global Oncology. 2025 Mar; 11: e2400443. doi: 10.1200/GO-24-00443.

Cotache‐Condor C, Kantety V, Grimm A, Williamson J, Landrum KR, Schroeder K. Determinants of delayed childhood cancer care in low‐and middle‐income countries: a systematic review. Pediatric blood & cancer. 2023 Mar; 70(3): e30175. doi10.1002/pbc.30175.

Siddiqui DE, Ashraf MS, Iftikhar S, Belgaumi AF. Predictors of treatment abandonment for patients with pediatric cancer at Indus Children Cancer Hospital, Karachi, Pakistan. Pediatric blood & cancer. 2018 Feb; 65(2): e26818. doi: 10.1002/pbc.26818.

Mirutse MK, Tolla MT, Memirie ST, Palm MT, Hailu D, Abdi KA et al. The magnitude and perceived reasons for childhood cancer treatment abandonment in Ethiopia: from health care providers' perspective. BioMed Central Health Services Research. 2022 Aug; 22(1): 1014. doi: 10.1186/s12913-022-08188-8.

Palagyi A, Balane C, Shanthosh J, Jun M, Bhoo‐Pathy N, Gadsden T et al. Treatment abandonment in children with cancer: does a sex difference exist? A systematic review and meta‐analysis of evidence from low‐and middle‐income countries. International Journal of Cancer. 2021 Feb; 148(4): 895-904. doi: 10.1002/ijc.33279.

Bhatia KP, Ganguly S, Sasi A, Kumar V, Agarwala S, Meel R et al. Sex bias in treatment abandonment of childhood cancer in India. Indian Journal of Pediatrics. 2024 Nov; 91(11): 1119-26. doi: 10.1007/s12098-023-05010-z.

Atwiine B, Busingye I, Kyarisiima R, Baluku E, Mbabazi R, Bamwine B et al. "Money was the problem": Caregivers' self‐reported reasons for abandoning their children's cancer treatment in southwest Uganda. Pediatric Blood & Cancer. 2021 Nov; 68(11): e29311. doi: 10.1002/pbc.29311.

Hazarika M, Mishra R, Saikia BJ, Bhuyan C, Nyuthe CW, Sarma A et al. Causes of treatment abandonment of pediatric cancer patients-experience in a regional cancer centre in North East India. Asian Pacific Journal of Cancer Prevention. 2019 Apr; 20(4): 1133. doi: 10.31557/APJCP.2019.20.4.1133.

Arora RS, Eden T, Pizer B. The problem of treatment abandonment in children from developing countries with cancer. Pediatric Blood & Cancer. 2007 Dec; 49(7): 941-6. doi: 10.1002/pbc.21127.

Metcalf M, Kajoka HD, Majaliwa E, Tupetz A, Staton CA, Vissoci JR et al. "It's his cheerfulness that gives me hope": A qualitative analysis of access to pediatric cancer care in Northern Tanzania. PLOS Global Public Health. 2024 Dec; 4(12): e0003503. doi: 10.1371/journal.pgph.0003503.

Amayiri N and Bouffet E. Treatment abandonment and refusal among children with central nervous system tumors in Jordan. Pediatric Blood & Cancer. 2021 Aug; 68(8): e29054. doi: 10.1002/pbc.29054.

Tahirkheli N, Imran S, Ahmed F, Raza MR, Khan Z, Munir S et al. Addressing Treatment Abandonment in Pediatric Oncology: The Role of Missed Appointment Call-Back Systems in a Pakistani Setting. Journal of the Dow University of Health Sciences (JDUHS). 2024 Dec; 18(3): 131-6. doi: 10.36570/jduhs.2024.3.2194.

Farrag A, Mohammed K, Ghazaly MH, Berthold F. Noncompliance of pediatric cancer patients with chemotherapy: A single-center experience in a lower-middle income country. Pediatric Hematology and Oncology. 2024 Jan; 41(1): 41-53.255. doi: 10.1080/08880018.2023.2256780.