Background The most important reason for childhood cancer treatment failure in low-income countries is treatment abandonment.
Objective The aim of this study was to explore reasons for childhood cancer treatment abandonment and assess the clinical condition of these children.
Design This was a descriptive study using semistructured questionnaires. Home visits were conducted to interview families of childhood cancer patients, diagnosed between January 2007 and January 2009, who had abandoned treatment at the Moi Teaching and Referral Hospital (MTRH).
Results Between January 2007 and January 2009, 222 children were newly diagnosed with a malignancy at MTRH. Treatment outcome was documented in 180 patients. Of these 180 patients, 98 (54%) children abandoned treatment. From December 2011 until August 2012, 53 (54%) of the 98 families were contacted. Due to lack of contact information, 45 families were untraceable. From 53 contacted families, 46 (87%) families agreed to be interviewed. Reasons for abandonment were reported by 26 families, and they were diverse. Most common reasons were financial difficulties (46%), inadequate access to health insurance (27%) and transportation difficulties (23%). Most patients (72%) abandoned treatment after the first 3 months had been completed. Of the 46 children who abandoned treatment, 9 (20%) were still alive: 6 (67%) of these children looked healthy and 3 (33%) ill. The remaining 37 (80%) children had passed away.
Conclusions Prevention of childhood cancer treatment abandonment requires improved access to health insurance, financial or transportation support, proper parental education, psychosocial guidance and ameliorated communication skills of healthcare providers.
- childhood cancer
- treatment abandonment
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What is already known on this topic?
Abandonment of childhood cancer treatment is a major contributor to treatment failure in low-income countries and virtually unknown in high-income countries.
The reasons for treatment abandonment are documented in high-income countries and low-income countries in Central America and Asia.
What this study adds?
This study highlights the reasons for abandonment in a population based in Africa.
Given the different sociocultural setting, the reasons and the timing of the abandonment are unique to this setting. This may provide information that is crucial in setting up intervention programmes to minimise abandonment in Africa.
Approximately 200 000 children and adolescents are diagnosed with cancer every year worldwide. Low-income countries bear the burden of childhood cancer accounting for 80% of cases and 90% of mortality. This poor outcome results from different factors, including late presentation, limited access to curative therapies, suboptimal supportive care and treatment abandonment.1–4
Treatment abandonment is a major contributor to treatment failure in low-income countries accounting for up to 50–60% of cases. On the contrary, this phenomenon is virtually unknown in high-income countries.5–10
Studies focusing on reasons for treatment abandonment among childhood cancer patients are scarce and absent for Africa.11 The most important reason for childhood cancer treatment failure in the Moi Teaching and Referral Hospital (MTRH) in Western Kenya is abandonment of treatment whereby 54% of all families prematurely stop prescribed treatment.12 Insight into the reasons of families to abandon treatment is urgently required and will guide interventions aimed at avoiding abandonment.
The aim of this study was to interview parents of children who had abandoned cancer treatment to explore their reasons for abandonment and to assess the clinical condition of the children.
Our study was carried out in Kenya, a country located in Eastern Africa. Kenya has 41 million inhabitants. Half of all citizens live below poverty line.13
The service area of MTRH is vast. The estimated population served is 16–18 million people, and 100–120 children are diagnosed with cancer at this institution every year.14 The hospital has a bed capacity of 700 patients of which 72 are in the paediatric department. This department includes 12 beds reserved for paediatric oncology, where there are commonly two oncology patients per bed.
The National Hospital Insurance Fund (NHIF) is the most common health insurance in Kenya. It is available for every Kenyan resident above 18 years. The insurance covers inpatient care for the principal member and family in public hospitals. NHIF members who are not employed or self-employed pay 1.4 Euro (Ksh 160) per month. NHIF members who are employed pay a variable amount depending on their salary.15 Less than 10% of Kenyan population is enrolled in NHIF.16 ,17
A descriptive study was conducted. Home visits were made to families whose children were diagnosed between January 2007 and January 2009 and had abandoned treatment. In line with International Society of Paediatric Oncology (SIOP) recommendations,10 treatment abandonment was defined as failure to start or continue treatment during four or more consecutive weeks. Home visits were conducted from December 2011 until August 2012.
Places of residence and telephone numbers were retrieved from medical records. Families were contacted by phone to make an appointment for the interview. In case telephone contacts were missing, the place of residence was visited and neighbours or relatives were asked for contact details of the family. In case the family was not traceable by phone or residence visit, we requested the region's community leaders to help find the family involved.
Semistructured questionnaires and observations of living circumstances were conducted by an independent, trained interviewer and assistant.
Interviews focused on reasons for abandonment and condition of each child after discontinuing treatment. A panel of doctors and psychologists assured clear coherent questions. The questionnaire was pilot-tested for its content, clarity and cultural sensitivities on five families and revised accordingly. Family living circumstances were observed to gain insight about socioeconomic and housing conditions.
Respondents rendered informed consent. Anonymity and confidentiality were assured. The study was endorsed by the Research Ethics Committee of MTRH.
Frequency distributions, median, means and SDs were assessed for each variable. Differences in sociodemographic and clinical characteristics between respondents and non-respondents were compared using χ2, Fisher's exact and t tests. Fisher's exact test for variables with more than two categories was performed in R V.2.15.0. p Values (two-sided) were considered statistically significant if <0.05. Data management and analysis were performed using SPSS.
Patient and parent characteristics
Between January 2007 and January 2009, 222 children were newly diagnosed with a malignancy at MTRH. Treatment outcome was documented in 180 patients. Of these 180 patients, 98 (54%) children abandoned treatment.5 Boys abandoned treatment slightly more often, but this difference did not reach statistical significance (p=0.078).
From December 2011 until August 2012, we were able to contact 53 (54%) of 98 families: 64% directly by phone, and 36% through intervention of region's community leaders. Due to lack of contact information, 45 families were untraceable. From 53 contacted families, 46 (87%) families agreed to be interviewed and 7 (13%) families refused to participate. No significant differences in age, gender or type of cancer were found between group of children whose families could or could not be contacted.
Table 1 presents sociodemographic characteristics. Duration between interview and abandonment ranged from 25 to 64 months, median 44 months. Figure 1 shows the distribution of different types of cancer. Table 2 illustrates living circumstances of families concerned.
Decision to abandon treatment
The decision to abandon treatment was made by both parents (26%), doctors (13%), grandparents (7%), relatives (4%), patient (2%), father (2%), combination of mother/doctor/patient (2%). Twenty (43%) respondents had difficulties answering this question. These parents felt strongly that they had done everything in their power to save their child's life and never made a decision to abandon treatment. However, treatment had been interrupted for more than 4 weeks and by definition these families did abandon treatment. Only one family came back for treatment 4 months after initial abandonment.
Patient condition after abandonment
Parents stated that the condition of their children at time of treatment abandonment was good (43%) and not good (57%). Their child's condition deteriorated within several weeks or months of abandonment in 87% of cases and stayed good in 13%.
During the home visits, we found that 20% of children were still alive 35–64 months after abandoning treatment: 67% looked healthy and 33% ill. The other 80% of children had died. Duration between treatment abandonment and death ranged between 0 and 14 months. Table 3 shows the fate of patients per treatment duration in which abandonment took place.
Reasons for abandonment
Only 26 (57%) families could report reasons for abandonment. Reasons of families were diverse. Table 4 illustrates that the most common reasons were financial difficulties, inadequate access to NHIF and transportation difficulties.
The most common reason for families to abandon treatment was financial difficulties (46%). During treatment, 30% of all families had a regular income, and 70% did not. The main economic provider was father (74%), extended family (13%), mother (9%) or both parents (4%). The average family income was 40 Euro per month (Ksh 4400). Most families (91%) owned land, and 57% reported that their land was not taken care of when parents stayed with their child in hospital. Since the start of treatment, family's income decreased in 85% of cases because parents had to accompany their child to hospital and therewith lost daily wages or harvest from land. To solve their financial difficulties, families (74%) had to sell valuables: livestock, land, produce of land, household goods. Some families (15%) held a community fundraising, called ‘Harambee’. Many families (67%) ended up in debts, and of these families 52% still have not been able to pay off these debts 4–5 years after the start of treatment.
Inadequate access to NHIF
The second most common reason for treatment abandonment was inadequate access to NHIF (27%). Figure 2 illustrates that 22% of families had NHIF before they came to MTRH, and 78% did not. Figure 2 also shows the changes in NHIF status of families that did not have insurance at diagnosis.
Of families without NHIF at diagnosis, 75% were informed inside hospital about possibility to apply for NHIF and 25% were not informed. Seventeen (47%) families applied for NHIF, and 19 (53%) families never applied. Ultimately only 33% of children without NHIF at diagnosis received NHIF during treatment. After the application, it took on average 3 months before NHIF started to cover hospital bills.
Summarising, 22 (48%) families had NHIF during treatment: 10 families already prior to treatment and 12 obtained NHIF during treatment. NHIF covered treatment costs partially (77%), completely (18%) and one family did not remember. Twenty-four (52%) families never had NHIF during treatment: 7 families were never informed about this possibility, 12 were informed but never applied and 5 were informed and applied but their child abandoned treatment before NHIF became operational.
The third most common reason for treatment abandonment was transportation difficulties (23%). Distance to hospital was <50 km (22%), 50–100 km (30%) and >100 km (48%). Mode of transportation used to reach hospital was public transport (46%), walking/public transport (39%), renting a vehicle (13%) and taxi (2%). Travel time to reach hospital varied from <1 h (11%), 1–3 h (50%) and >3 h (39%). Travelling to hospital was considered to be expensive (85%), time consuming (65%) and difficult (37%).
The treatment abandonment rate of 54% in MTRH is similar to what has been reported in other studies in low-income countries.18–20 This study involved home visits of families in Kenya whose children had abandoned treatment. To the best of our knowledge, this is the first study of its kind carried out in Africa as regards paediatric oncology.11 The reasons given for abandonment were diverse, and the majority of families gave more than one reason. Most common reasons were financial difficulties, inadequate access to health insurance and transportation difficulties. The vast majority of patients abandoned treatment after the first 3 months had been completed. Of the 46 children who had abandoned treatment, 20% were still alive and 80% had passed away.
Financial difficulties were the leading cause of treatment abandonment. However, less than half of all families reported it as the reason for abandonment and only two reported it as the only reason for drop-out. These numbers are actually remarkably low given the very poor living circumstances of families involved. Other studies have also reported financial difficulties as one of the top reasons for abandonment.8 ,21 ,22
Inadequate access to NHIF was the second most common reason cited for treatment abandonment. Twenty-two per cent of families had NHIF before they came to MTRH. Only 15% of families had been informed about NHIF immediately at diagnosis. Families considered the application procedure to be elaborate. Ultimately only 33% of children without NHIF at diagnosis received NHIF during treatment. After completing the application, it took 3 months on average before NHIF started to cover hospital bills. Much progress can be made in this barrier to care, particularly because the national health insurance in Kenya is quite affordable even to families in the lowest income strata.15 NHIF could provide a significant financial relief to families.
Transportation difficulties were the third most common reason for abandonment. The vast majority of families lived more than 50 km from hospital and used public transport to get to MTRH. Public transport in Kenya is fairly disorganised and does not follow any specific timetables. Vehicles can change routes midway in the journey and increase fares without any prior notice. People who are already strained financially by the disease may be unable to afford the increased cost of transportation to and from hospital. Having satellite clinics or opening up regional cancer centres could help in reducing transportation difficulties. An alternate solution is accommodation for families near MTRH.23
The other reasons for treatment abandonment were very diverse, but clearly demonstrate that there is much room for improvement as healthcare providers themselves can help overcome most of these problems by better patient and family education (eg, belief that cancer is not curable, preference for alternative treatment, unclear information about diagnosis and treatment, long delays experienced in the hospital and painful bone marrow punctures).
Sixty per cent of families abandoned treatment more than 3 months after diagnosis. This is very unusual compared with previous studies where abandonment predominantly occurs at diagnosis or in the very first weeks of treatment.8 ,11 ,20 This delayed abandonment is mainly a result of hospital policies in Kenya where patients are retained until their hospital bill is either paid or waived.12 ,24–26 In practice this means that initially nearly all patients receive medical care. It is only later when families are confronted with a huge hospital bill that they decide to stop treatment. Many families may also not be able to confront doctors at the beginning of therapy that they want to abandon therapy because doctors are generally treated with high regard in Kenyan society and it would be culturally unacceptable for patients to question or disagree with physicians. After going home, families may also decide not to return for medical care due to social pressure. The communities may doubt the curability of cancer and recommend alternative medicine.12
This study made apparent that the topic of treatment abandonment is very sensitive. Although we tried our best to explain that we certainly did not blame the families, parents may nevertheless have felt uncomfortable or guilty. Only 57% of families confirmed that they had prematurely stopped treatment and could give their reasons for it. As per the preliminary findings of a study we have recently conducted at MTRH, the parents may not be adequately informed about the duration of treatment and the need to complete it. Consequently, parents may not be aware that they stopped treatment prematurely. In low-income countries, information provision to poor families in public hospitals is not given priority.7 ,8 ,19 ,27
Interestingly families of six children said that healthcare workers suggested that they should stop therapy. Both families and medical records suggest that this advice was not always based on a dismal condition or prognosis. The advice may be due to the fact that some healthcare providers in MTRH do not believe in the curability of cancer and realise that families will be faced with many socioeconomic and emotional hardships if they continue treatment. Given the historically poor survival rates of childhood cancer in low-income countries, this impression is understandable, but a mind shift is required.
Various limitations were encountered during the course of this study. The study was carried out several years after diagnosis. This made it quite difficult to trace families due to missing or outdated contact information in medical records. Consequently, we were only able to reach half of all targeted families. The fact that some families declined to participate in the interviews may also have had an impact on the results of this study.
Based on the findings of this study, we recommend that governments ensure that more families get enrolled in health insurance as this is likely to have a great impact on outcomes of childhood cancer.12 Citizens should be actively encouraged or required to take health insurance. The application procedure should be simplified and personnel assigned to facilitate the process. Healthcare providers themselves can also facilitate access to health insurance. Every family should be educated immediately at diagnosis, both verbally and in writing, about the advantages. Satellite clinics or a guesthouse for families would alleviate transportation difficulties. A system to pay for the transport needs of families would also be useful. There is need for healthcare providers to improve on their attitude and communication skills. Proper parental education and psychosocial support is essential to convince families to adhere with therapy.27 ,28
Our study has been supported by a SIOP International Fellowship. The authors thank KLM (Royal Dutch Airlines) Healthcare and the Doctor2Doctor program for their ongoing support. We are also grateful to the local caregivers at MTRH for their assistance and to the AMPATH program.
Contributors FN, SM, AS, SL, JM and HM: Data collection and writing of the manuscript. JS, MS, RV and GK: Writing of the manuscript. PMdV: Data analysis and writing of the manuscript.
Funding Our study was supported by a SIOP International Fellowship and by the Doctor2Doctor program, collaboration between KLM Healthcare and VU University Medical Center.
Competing interests None.
Ethics approval Institutional Research and Ethics committee of Moi University and Moi Teaching and Referral Hospital.
Provenance and peer review Not commissioned; externally peer reviewed.