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

Mostert, Saskia,Gunawan, Stefanus,Wolters, Emma,van de Ven, Peter,Sitaresmi, Mei,van Dongen, Josephine,Veerman, Anjo,Mantik, Max,Kaspers, Gertjan Asian Pacific Journal of Cancer Prevention 2012 Asian Pacific journal of cancer prevention Vol.13 No.12

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 child's health was beyond doctor control and determined by luck, fate or God (55%). Causes of cancer were thought to be destiny (35%) or God's 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 child's 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.

Health-Care Providers' and Parents' Perspectives on Complementary Alternative Medicine in Children with Cancer in Indonesia

Susilawati, Dwi,Sitaresmi, Mei,Handayani, Krisna,Ven, Peter van de,Sutaryo, Sutaryo,Kaspers, Gertjan,Mostert, Saskia Asian Pacific Journal of Cancer Prevention 2016 Asian Pacific journal of cancer prevention Vol.17 No.7

Background: Complementary alternative medicine (CAM) use in children with cancer is widespread. Health-care providers (HCP) need to acknowledge and address this need. This study explored and compared perspectives on CAM of HCP and parents of young patients with cancer in Indonesia. Materials and Methods: We conducted a cross-sectional study using semi-structured questionnaires in HCP and parents of childhood cancer patients at an Indonesian academic hospital. Results: A total of 351 respondents participated: 175 HCP (response rate 80%) and 176 parents (response rate 80%). Parents were more likely than HCP to think that chemotherapy can cure cancer (80% compared to 69%, P=0.013). Nearly half of all parents (46%) and HCP (45%) doubted whether CAM can cure cancer. Parents were more likely than HCP to think that CAM can be helpful in childhood cancer treatment (54% compared to 35%, P=0.003). The most recommended CAM by HCP was self-prayer (93%). Reasons for recommending CAM were: hope for improvement of the child's condition (48%), patient wants to stop treatment (42%). Most discouraged CAM by HCP was by old-smart people (70%), the reasons being: lack of evidence for usefulness (77%), lack of CAM knowledge (75%). The proportion thinking that patients were unlikely to raise the CAM topic if they perceived that doctors were skeptical was higher in parents than in HCP (52% versus 1%) (P<0.001). Most HCP (71%) and parents (77%) acknowledged that their knowledge about safety and efficacy of CAM was inadequate (P=ns). The proportion that wanted to learn or read more about CAM was higher among parents than HCP (48% compared to 31%, P=0.002). Conclusions: HCP and parents have different perspectives on CAM use in children with cancer. HCP should enhance their CAM knowledge and encourage open communication about CAM with parents. If doctors' skepticism is perceived, parents are unlikely to raise CAM as a topic.

Parents' and Health-Care Providers' Perspectives on Side-Effects of Childhood Cancer Treatment in Indonesia

Gunawan, Stefanus,Wolters, Emma,Dongen, Josephine Van,De Ven, Peter Van,Sitaresmi, Mei,Veerman, Anjo,Mantik, Max,Kaspers, Gertjan,Mostert, Saskia Asian Pacific Journal of Cancer Prevention 2014 Asian Pacific journal of cancer prevention Vol.15 No.8

Background: Efficacy of childhood cancer treatment in low-income countries may be impacted by parents' and health-care providers' perspectives on chemotherapy-related side-effects. This study explores prevalence and severity of side-effects in childhood cancer, and compares health beliefs about side-effects between parents and health-care providers, and between nurses and doctors in Indonesia. Materials and Methods: Semi-structured questionnaires were filled in by 40 parents and 207 health-care providers in an academic hospital. Results: Parents exporessed a desire to receive more information about side-effects (98%) and worried about this aspect of treatment (90%), although side-effects were less severe than expected (66%). The most frequent was behavior alteration (98%) and the most severe was hair loss. Only 26% of parents consulted doctors about side-effects. More parents, compared to health-care providers, believed that medicines work better when side-effects are more severe (p<0.001), and accepted severe side-effects (p=0.021). More health-care providers, compared to parents, believed that chemotherapy can be stopped or the dosage altered when there are side-effects (p=0.011). More nurses, compared to doctors, stated that side-effects were unbearable (p=0.004) and made them doubt efficacy of treatment (p<0.001). Conclusions: Behavior alteration is the most frequent and hair loss the most severe side-effect. Apparent discrepancies in health beliefs about side-effects exist between parents and health-care providers. A sustainable parental education program about side-effects is recommended. Health-care providers need to update and improve their knowledge and communication skills in order to give appropriate information. Suchmeasures may improve outcome of childhood cancer treatment in low-income countries, where adherence to therapy is a major issue.

Parental Experiences with Chemotherapy-Induced Alopecia among Childhood Cancer Patients in Indonesia

Gunawan, Stefanus,Broeke, Chloe ten,Ven, Peter van de,Arnoldussen, Marijn,Kaspers, Gertjan,Mostert, Saskia Asian Pacific Journal of Cancer Prevention 2016 Asian Pacific journal of cancer prevention Vol.17 No.4

Background: This study assessed parental experiences with chemotherapy-induced alopecia among children with cancer treated at an Indonesian academic hospital. Materials and Methods: Fifty parents of childhood cancer patients were interviewed using semi-structured questionnaires. Results: The moment that hair fell out was the moment that parents (84%) had to admit their child had cancer. Alopecia was a traumatizing painful experience (46%). Active strategies to hide alopecia, mainly hats, were used by 66% of children, while 34% never covered their bald head. If money had not been an issue, 40% would use another strategy. Alopecia made children limit outdoor daily activities (78%) and engagement with others (60%). Significantly more children from high-educated (95%) than low-educated (60%) parents received sympathy from other people (P=0.012). Significantly more Christian (29%) than Muslim (0%) families confirmed that alopecia lowered the quality of life (P=0.046). Most parents (82%) had no prior plans about alopecia management, yet for significantly more girls (26%) than boys (0%) such plans existed (P=0.044). Parents received most information about alopecia from other parents (66%). Parents (92%) needed more alopecia education from doctors. Of all school-attending children, 53% were bullied and 47% did not want to attend school due to alopecia. Significantly more high-educated than low-educated families received pity from teachers and pupils (94% vs. 0%, P=0.004), and acceptance by pupils (81% vs. 0%, P=0.021). Conclusions: Alopecia is a severe, far-stretching side-effect of chemotherapy with physical, psychological and social consequences for children and parents. Parents should be better informed about occurrence and impact of alopecia. Extra attention is required to facilitate children's return to school. Healthcare providers should facilitate optimal supportive care through open dialogue and provision of educational m aterials for parents, children and their community.

Health-Care Providers' Perspectives towards Childhood Cancer Treatment in Kenya

Njuguna, F,Burgt, RHM van der,Seijffert, A,Musimbi, J,Langat, S,Skiles, J,Sitaresmi, MN,Ven, PM van de,Kaspers, GJL,Mostert, S Asian Pacific Journal of Cancer Prevention 2016 Asian Pacific journal of cancer prevention Vol.17 No.9

Background: This study explored perspectives of health-care providers on childhood cancer treatment in Kenya. Materials and Methods: A self-administered questionnaire was completed by 104 health-care providers in January and February 2013. Results: Seventy six percent of the health-care providers believed cancer to be curable. More doctors than other health-care providers had this positive opinion (p=0.037). The majority of health-care providers (92%) believed that most children with cancer will not be able to finish their treatment due to financial difficulties. They considered that prosperous highly-educated parents adhere better with treatment (88%) and that doctors adhere better with treatment for prosperous highly-educated parents (79%). According to 74% of health-care providers, quality of care is better for prosperous highly-educated parents (74%). Most health-care providers reported giving more explanation (71%), work with greater accuracy (70%) and use less difficult vocabulary (55%) to prosperous more educated families. Only 34% of health-care providers reported they feel more empathy towards patients from prosperous families. Reasons for non-adherence with the protocol according to health-care providers are: family refuses drugs (85%), inadequate supply of drugs at pharmacy (79%), child looks ill (75%), and financial difficulties of parents (69%). Conclusions: Health-care providers' health beliefs and attitudes differ for patients with families having high versus low socio-economic backgrounds.