Mei Neni Sitaresmi

Comparing childhood leukaemia treatment before and after the introduction of a parental education programme in Indonesia

Setting: Previously, treatment and the results of treatment for childhood acute lymphoblastic leukaemia (ALL) in Indonesia differed significantly between poor and prosperous patients. Poor patients received less individual attention from oncologists and access to parental education and donated chemotherapy was lacking. Intervention: A structured parental education programme for both poor and prosperous parents was introduced in January 2004 to improve access to parental education and donated chemotherapy. The programme consisted of a video presentation, an information booklet, DVD, audiocassette, a statement-of-understanding for donated chemotherapy, and a complaints procedure. Informed consent was also sought. Objective: Our study compared childhood ALL treatment outcome before and after the introduction of the parental education programme. Design: The medical records of 283 children with ALL diagnosed before (1997–2002; n = 164) and after (2004–2006; n = 119) the introduction of the education programme were reviewed. Data on treatment results and parental socioeconomic status were collected. Results: After the introduction of the education programme, treatment refusal decreased (from 14% to 2%) and event-free survival increased (from 13% to 29%) significantly among poor patients. Treatment dropout increased (from 0% to 13%) significantly among prosperous patients. Overall, toxic death (from 23% to 36%) increased significantly, but there was no significant difference in event-free survival. Conclusions: After introduction of the programme, treatment refusal decreased and event-free survival increased significantly among poor families. However, improved knowledge, skills and communication are still required to combat the high rates of toxic death and treatment dropout. Treatment intensity should be accompanied by improved supportive care.

Health-related quality of life assessment in Indonesian childhood acute lymphoblastic leukemia.

BackgroundMost studies on Health-related Quality of Life (HRQOL) in children with cancer were conducted in developed countries. The aims of this study were to assess the HRQOL in childhood acute lymphoblastic leukemia (ALL) patients in Indonesia and to assess the influence of demographic and medical characteristics on HRQOL.MethodsAfter cultural linguistic validation, a cross-sectional study of HRQOL was conducted with childhood ALL patients and their guardians in various phases of treatment using the Pediatric Quality of Life Inventory™ (PedsQL™) 4.0 Generic Core Scale and the Pediatric Quality of Life Inventory™ (PedsQL™) 3.0 Cancer Module.ResultsNinety-eight guardians and 55 patients participated. The internal consistency of both scales ranged from 0.57 to 0.92. HRQOL of Indonesian patients was comparable with those in developed countries. There were moderate to good correlations between self-reports and proxy-reports, however guardians tended to report worse HRQOL than patients. Children of the 2–5 year-group significantly had more problems in procedural anxiety, treatment anxiety and communication subscales than in older groups (p < 0.05). In the non-intensive phase HRQOL was significantly better than in the intensive phase, both in patient self-reports and proxy-reports.ConclusionYounger children had more problems in procedural anxiety, treatment anxiety and communication subscales. Therefore, special care during intervention procedures is needed to promote their normal development. Psychosocial support should be provided to children and their parents to facilitate their coping with disease and its treatment.

Attitude of Health-Care Providers Toward Childhood Leukemia Patients with Different Socio-Economic Status

Treatment results differ significantly between poor and prosperous children with leukemia in Indonesia. The objective of this study was to determine whether parental socio‐economic status influences beliefs, attitude, and behavior of health‐care providers (hcp) treating childhood leukemia in Indonesia.

Abandonment of childhood cancer treatment in Western Kenya

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.

Two overlooked contributors to abandonment of childhood cancer treatment in Kenya: parents' social network and experiences with hospital retention policies.

The principal reason for childhood cancer treatment failure in low‐income countries is treatment abandonment, the most severe form of nonadherence. Two often neglected factors that may contribute to treatment abandonment are as follows: (a) lack of information and guidance by doctors, along with the negative beliefs of family and friends advising parents, which contributes to misconceptions regarding cancer and its treatment, and (b) a widespread policy in public hospitals by which children are retained after doctors discharge until medical bills are settled.

Socio-economic Status Plays Important Roles in Childhood Cancer Treatment Outcome in Indonesia

BACKGROUND The influence of parental socio-economic status on childhood cancer treatment outcome in low-income countries has not been sufficiently investigated. Our study examined this influence and explored parental experiences during cancer treatment of their children in an Indonesian academic hospital. MATERIALS AND METHODS Medical charts of 145 children diagnosed with cancer between 1999 and 2009 were reviewed retrospectively. From October 2011 until January 2012, 40 caretakers were interviewed using semi-structured questionnaires. RESULTS Of all patients, 48% abandoned treatment, 34% experienced death, 9% had progressive/ relapsed disease, and 9% overall event-free survival. Prosperous patients had better treatment outcome than poor patients (P<0.0001). Odds-ratio for treatment abandonment was 3.3 (95%CI: 1.4-8.1, p=0.006) for poor versus prosperous patients. Parents often believed that their childs health was beyond doctor control and determined by luck, fate or God (55%). Causes of cancer were thought to be destiny (35%) or Gods punishment (23%). Alternative treatment could (18%) or might (50%) cure cancer. Most parents (95%) would like more information about cancer and treatment. More contact with doctors was desired (98%). Income decreased during treatment (55%). Parents lost employment (48% fathers, 10% mothers), most of whom stated this loss was caused by their childs cancer (84% fathers, 100% mothers). Loss of income led to financial difficulties (63%) and debts (55%). CONCLUSIONS Treatment abandonment was most important reason for treatment failure. Treatment outcome was determined by parental socio-economic status. Childhood cancer survival could improve if financial constraints and provision of information and guidance are better addressed.

Chemotherapy-Related Side Effects in Childhood Acute Lymphoblastic Leukemia in Indonesia: Parental Perceptions

Noncompliance with prescribed medication has been associated with increased chance of relapse and poor outcome. Side effects may be an important cause of noncompliance. Fifty-one parents of children with acute lymphoblastic leukemia in a tertiary care hospital in Indonesia were interviewed about their perception of side effects and their impact on treatment noncompliance and daily activities. A symptom checklist assessing 13 common symptoms was used to examine side effects. During chemotherapy, childhood acute lymphoblastic leukemia patients suffered from psychological as well as physical side effects. The most frequent side effect reported by parents was behavior alteration (92%). Second and third in frequency were increased appetite and infections, reported by 88% and 83% of parents, respectively. The most severe side effects were leg weakness, increased appetite, and behavior alteration. The overall frequency of side effects was weakly correlated to noncompliance. Reducing the impact of side effects may increase compliance with the treatment.

Does aid reach the poor? Experiences of a childhood leukaemia outreach-programme

Previously, we found that the access to donated chemotherapy for childhood leukaemia patients in Indonesia was limited: only 16% of eligible families received donations. After the introduction of a structured parental education programme, we examined the access of parents of children with leukaemia to donated chemotherapy in an Indonesian academic hospital. The programme consisted of a video-presentation in hospital, information-booklet, audiocassette, DVD, procedures for informed-consent, statement of understanding for donated chemotherapy and a complaints-mechanism. Of 72 new patients, 51 parents (71%) were interviewed by independent psychologists using questionnaires. Parents of 21 patients (29%) did not participate because their children dropped-out (n=10) or died (n=11) before an interview took place. Four patients had health insurance and did not need donated chemotherapy. Access to donated chemotherapy was improved: 46/47 patients (98%) received donations. Structured parental education improved the access to donated chemotherapy. Outreach-programmes may benefit from this approach. This may enable more patients from poor socio-economic backgrounds in the developing countries to receive aid and achieve cure.

Influence of health-insurance access and hospital retention policies on childhood cancer treatment in Kenya

Kenyan national policies for public hospitals dictate that patients are retained on hospital wards until their hospital bills are paid, but this payment process differs for patients with or without access to National Hospital Insurance Fund (NHIF) at diagnosis. Whether these differences impact treatment outcomes has not been described. Our study explores whether childhood cancer treatment outcomes in Kenya are influenced by health‐insurance status and hospital retention policies.

Parental experiences of childhood leukemia treatment in indonesia.

In our study, we examined socioeconomic, treatment-related, and psychologic experiences of parents during the acute lymphoblastic leukemia treatment of their children in an academic hospital in Indonesia. Children were treated with the WK-ALL-2000 protocol and received donated chemotherapy. From November 2004 to April 2006, 51 parents were interviewed by psychologists using semi-structured questionnaires. The family income had decreased (69%) since the start of treatment. Parents lost their jobs (29% of fathers and 8% of mothers), most of whom stated that this loss of employment was caused by the leukemia of their child (87% of fathers and 100% of mothers). Treatment costs resulted in financial difficulties (78%), debts (65%), and forced parents either to postpone or withdraw from parts of treatment (18%). Parents mentioned needing more information (86%) from and contact (77%) with doctors. The parent organization did not pay any visits (69%) during hospitalization, nor did they give information (59%) or emotional support (55%). We have concluded that the socioeconomic impact of leukemia treatment was profound. Communication between parents and doctors requires improving. The role of the parent organization was insignificant and must be ameliorated.