Prevalence, predictors, causes of treatment refusal and abandonment in children with acute lymphoblastic leukaemia over 18 years in North India. Treatment phase affecting factors: A step towards better focussed counselling

Alam, Areesha; Kumar, Archana

doi:10.1016/j.canep.2018.07.011

Cited by 11 publications

(21 citation statements)

References 28 publications

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“…In India, treatment abandonment rates in acute leukaemia vary from 15% to 29% in most of the tertiary care centers, except in few centers of excellence (<10%) . This implies that, of the estimated 40 000 to 50 000 annual new childhood cancer cases in India, a majority would be deprived of adequate treatment and might eventually succumb to death.…”

Section: Introductionmentioning

confidence: 99%

Impact of financial support and focussed group counselling on treatment abandonment in children with acute lymphoblastic leukaemia. Experience over 22 years from North India

Alam

Kumar

2018

Psycho-Oncology

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Objectives: Efforts are being made worldwide to prevent abandonment in children with leukaemia. The study aimed to determine changes in treatment refusal, treatment abandonment rates, and its reasons in response to financial support and focussed group counselling.Methods: A retrospective cohort study conducted at paediatric haematologyoncology unit, King George's Medical University, Lucknow among children <18 years admitted with acute lymphoblastic leukaemia from 1995 to 2017. Study divided into three periods: Phase ): Financial, social support with group counselling. Phase 3-subdivided into 3a: group counselling and 3b: intensified group counselling. Results: Number of children registered for treatment during phase 1, 2, 3a, 3b: 176, 200, 360, and 305. Treatment refusal decreased significantly over time: 21% vs 14.5%vs 12.5% vs 5.9% (P < 0.001), especially during phase 3b. Although no change was found in treatment abandonment during phase 2, abandonment significantly reduced in phase 3a (20.3%) as compared with phase 1 (30.2%), with the proportion of children abandoning, due to financial constraints, declining. Abandonment further reduced in phase 3b vs phase 3a (11.1% vs 20.3%) (P = 0.001). After adjusting for other variables, abandonment was found to decrease independently in phase3 (a, b) as compared with phase 1 (P1 = 0.017, P2 = 0.007). Conclusions:Although helpful, financial assistance unaccompanied by counselling may be insufficient to bring a radical change. Hence, parental counselling, emphasising on treatment adherence and the aftermaths of treatment abandonment, is indispensable for preventing abandonment in semi-literate populations.

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Section: Introductionmentioning

confidence: 99%

Impact of financial support and focussed group counselling on treatment abandonment in children with acute lymphoblastic leukaemia. Experience over 22 years from North India

Alam

Kumar

2018

Psycho-Oncology

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“…Eighteen studies met our inclusion criteria for the systematic review (Table 1). 29,32,33,35,40,41,[49][50][51][52][53][54][55][56][57][58][59][60] Two studies 41,51 were subsequently excluded from the meta-analysis because they did not report data necessary to determine sex-disaggregated rates of treatment abandonment.…”

Section: Resultsmentioning

confidence: 99%

“…The 18 studies included in the review provided data from 14 different LMICs: China, 29,40,60 Indonesia, 57 Costa Rica, 52 Colombia, 41 El Salvador, 51,52 Guatemala, 50,52 Honduras, 52,55 Nicaragua, 52 Panama, 52 Peru, 59 India, 35,49,53,54,56 Pakistan, 32 Malawi 33 and Zambia. 58 Of 11 465 children diagnosed with cancer and recommended therapy, 4723 (41%) were girls.…”

Section: Resultsmentioning

confidence: 99%

“…One-third of all included studies assessed cohorts with ALL. 29,49,[55][56][57]60 Other cancer types included acute myeloid leukaemia (AML) 40,53 and retinoblastoma 35,54 (two studies each), lymphomas 33 (one study) and sarcomas 52 (one study). A further six (33%) studies comprised patients with multiple cancer types, 32,41,50,51,58,59 including leukaemias, lymphomas, brain tumours, bone and soft tissue sarcomas and retinoblastoma.…”

Section: Resultsmentioning

confidence: 99%

“…29,32,33,35,40,49,50,[52][53][54][55][56][57][58][59][60] The number of children in each study ranged from 72 to 2641. Twelve studies (75%) used retrospective observational methods (case record review, 32,35,40,53,55,57,60 hospitalbased registry review, 49,50,52,59 secondary research database analyses 58 ) to identify children who had abandoned treatment. A further four studies 29,33,54,56 comprised prospective cohorts.…”

Section: Resultsmentioning

confidence: 99%

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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

Palagyi

Balane

Shanthosh

et al. 2020

Intl Journal of Cancer

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In this systematic review and meta-analyses, we sought to determine sex-disparities in treatment abandonment in children with cancer in low-and middle-income countries (LMICs) and identify the characteristics of children and their families most disadvantaged by such abandonment. Sex-disaggregated data on treatment abandonment were collated from the available literature and a random-effects meta-analysis was conducted to compare the rates in girls with those in boys. Subgroup analyses were conducted in which studies were stratified by design, cancer type and the Gender Inequality Index of the country of study. Eighteen studies were included in the systematic review and of these studies, 16 qualified for the meta-analysis, representing 10 754 children. The pooled rate of treatment abandonment overall was 30%. We observed no difference in the proportion of treatment abandonment in girls relative to estimates observed in boys (rate ratio [RR] 0.95, 95% CI: 0.79-1.15; P = .61). There was significant heterogeneity across the included studies and in the pooled estimate of RR for girls vs boys (both I 2 > 98%). Subgroup analyses did not reveal any effect on abandonment risk. Risk factors for abandonment observed fell into three main categories: socio-demographic; geographic; and travel-related. In conclusion, a high rate of treatment abandonment (30%) was observed overall for children with cancer in included studies in LMICs, although this was variable and context specific. No evidence of gender bias in childhood cancer treatment abandonment rates across LMICs was found. Given that the risk factors for abandonment are context specific, in-depth country-level analyses may provide further insights into the role of a child's gender in treatment abandonment decisions.

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Patient tracking during treatment of children with cancer in India – An exploratory study

et al. 2021

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Background: Abandonment of treatment, a major cause of treatment failure in low-and middle-income countries like India, is particularly high during the diagnostic and initial phase of treatment. Tracking of patients during this risk period may reduce treatment abandonment rates and increase quality of care.Aim: The primary aim was to pilot the use and check the acceptability of a tool for tracking children with cancer in New Delhi during the initial part of their treatment.Secondary aim was to estimate abandonment rates among these patients.Methods: This prospective study was carried out in two centers of North India in New Delhi and enrolled children less than 18 years diagnosed with cancer at these centers and who had registered with Cankids for social support. Parent support group (PSG) workers maintained contact with the child's family at least once a week for the first 12 weeks. Details of each contact and subsequent action were recorded in a customized book (called "You are not alone" or YANA Book). Descriptive analysis of these contacts was done in Microsoft Excel and presented in frequencies and percentages. The five-point Likert scale was used to check the acceptability of the tool among the PSG workers.Results: Seven PSG workers enrolled and tracked 81 patients (73% male with a median age of 6 years). During the 12-week study period, 986 contacts were attempted and three (3.7%) patients had abandoned their treatment. All PSG workers strongly agreed that the YANA book was simple to understand and use, decreased their workload, and helped provide better assistance to patients. Conclusion:The tool for patient tracking was well accepted by the PSG workers and considered easy to use. We now plan to implement our model as a routine service at all the partnering hospitals in India.

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Prevalence, predictors, causes of treatment refusal and abandonment in children with acute lymphoblastic leukaemia over 18 years in North India. Treatment phase affecting factors: A step towards better focussed counselling

Cited by 11 publications

References 28 publications

Impact of financial support and focussed group counselling on treatment abandonment in children with acute lymphoblastic leukaemia. Experience over 22 years from North India

Impact of financial support and focussed group counselling on treatment abandonment in children with acute lymphoblastic leukaemia. Experience over 22 years from North India

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

Patient tracking during treatment of children with cancer in India – An exploratory study

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