A parent-child conjoint psychological intervention for children in maintenance phase of acute lymphoblastic leukemia: Feasibility and preliminary outcomes from a randomized control pilot trial.

OBJECTIVE: To develop and test a brief Composite Intervention Module for Pre-adolescents with Acute Lymphoblastic Leukemia (CIMPALL). DESIGN: Single-center randomized controlled design. SETTING: A tertiary care center of national importance PARTICIPANTS: A total of 36 children with acute lymphoblastic leukemia in the maintenance phase of the treatment. INTERVENTION: A five-session (540 min) brief, multidomain, audiovisually aided, therapist-facilitated conjoint intervention module for children with cancer and their parents. MAIN OUTCOME MEASURES: Standardized psychological tools for children including CBCL, CPSS (Child Posttraumatic Stress Disorder Symptoms Scale), PedsQol (Pediatric Quality of Life), and NIMHANS (National Institute of Mental Health and Neurosciences) neuropsychological battery and parents including PTSD CC (Posttraumatic Stress Disorder Civilian Checklist), CHIP (Coping Health Inventory for Parents), CBS (Caregiver Burden Scale), and SRQ (Self-Reporting Questionnaire). RESULTS: A total of 36 patients were randomized to an experimental or a control group. Over 80% agreement was observed on indices of expert evaluation; 100% of participants found the sessions to be helpful, useful, appropriate in terms of time, duration, and place, and interventionist. The participation rate in the sessions was 94% and the study flow was smooth; 97.3% eligible candidates agreed to participate. Furthermore, 100% agreement on performance of activities was observed and the attrition rate was 5.26%. CONCLUSION: This pilot study presents the CIMPALL, which to the best of our knowledge is the first of its kind in India. The data suggest that the CIMPALL intervention is feasibly delivered by a clinical psychologist and that the CIMPALL intervention has an impact on important psychosocial variables for children with acute lymphoblastic leukemia and their parents.

Mutation Spectrum of Tuberous Sclerosis Complex Patients in Indian Population.

Tuberous sclerosis complex (TSC) is a multiorgan disorder characterized by formation of hamartomas and broad phenotypic spectrum including seizures, mental retardation, renal dysfunction, skin manifestations and brain tubers. It is inherited in an autosomal dominant pattern, caused due to mutation in either TSC1 or TSC2 genes. Seizures are one of the major presenting symptoms of TSC that helps in early diagnosis. The present study describes the mutation spectrum in TSC1 and TSC2 genes in TSC patients and their association with neurocognitive-behavioral phenotypes. Ninety-eight TSC patients were enrolled for TSC genetic testing after detailed clinical and neurobehavioral assessment. Large genomic rearrangement testing was performed by multiplex ligation-dependent probe amplification (MLPA) technique for all cases and Sanger sequencing was performed for MLPA negative cases. Large rearrangements were identified in approximately 1% in TSC1 and 14.3% in TSC2 genes. The present study observed the presence of duplications in two (2%) cases, both involving TSC2/PKD1 contiguous genes which to the best of our knowledge is reported for the first time. 8.1% of small variants were identified in the TSC1 gene and 85.7% in TSC2 gene, out of which 23 were novel variations and no variants were found in six (6.1%) cases. This study provides a representative picture of the distribution of variants in the TSC1 and TSC2 genes in Indian population along with the detailed assessment of neurological symptoms. This is the largest cohort study from India providing an overview of comprehensive clinical and molecular spectrum.

Hospital Based Psychosocial Support Program for Children with ALL and their Families: A Comprehensive Triad's Perspective.

OBJECTIVES: To elucidate potential target areas of intervention and mechanisms for implementation of intervention for children with cancer during the treatment phase. METHODS: Focused group discussion (FGDs) served as a primary source of providing phenomenal perspectives to explore the key objective. Eight focus groups of 45-60 min each were held with 5-9 members in each discussion. The participants were either patients, their caregivers or health care providers. The focus group audio recordings were professionally transcribed after all identifiers were removed. Employing a constructivist paradigm with a phenomenological approach, also known as emergent-systematic focus group design the study reported on families' experiences of childhood cancer as construction of objective reality. Investigator triangulation method was adopted to ensure trustworthiness. RESULTS: Using constant comparison analysis, multistage process analysis was done which resulted in 849 codes, 32 subthemes, 20 themes and 5 domains. A total of 64 participants participated: 4 FGDs with parents of children with ALL (n = 31); 1 FGD with professionals working in the field of cancer (n = 10) and 3 FGDs with children with ALL (n = 23). Participant's mean age at the time of study was 10 y (+3.3) for children; 37 y (+4.93) for caregivers and 35 y (+3.5) for professionals. The number of participants and their age range at study varied slightly between the eight focus groups. CONCLUSIONS: Caregivers presented care burden and compromised aspects of Quality of life (QOL). An effective and culturally sensitive psychosocial support for patients and their families during and post treatment, in addition to medical therapy, is strongly recommended.

Non-pharmacological Interventions for Pediatric Cancer Patients: A Comparative Review and Emerging Needs in India.

CONTEXT: Evidence-based research on psycho-oncology in last three decades lays emphasis upon the critical role of psychological services for better illness adjustment, improved quality of life, reduced distress and cognitive problems among the rapidly increasing pediatric cancer population. JUSTIFICATION: This review aims to summarize the evidence-based psychological interventions in childhood cancer over the two decades and addresses the wide gap that existed between intervention studies worldwide and India, thus highlighting the need for research and appropriate services. EVIDENCE ACQUISITION: We searched electronic databases such as MedLine, PubMed, PsycINFO, and Google Scholar. Key search terms were pediatric cancer, psycho-oncology, children with cancer + psychological intervention, or multimodal treatment, psychotherapy, cognitive training, behavioral, social skills+ feasibility study, pilot, randomized controlled trial, case study, systematic reviews. RESULTS: 28 full papers published between 1996 to 2016, including survivors and under-treatment children below 18 years, were reviewed. Various types of key interventions were psychosocial, physical, cognitive behavioral, cognitive, music art therapy and play therapy. Generally, intervention settings were either hospital or home, and were designed to promote psychological well-being. Psychological interventions were more in customised formats in these studies. A generic intervention module was not available for replication. CONCLUSION: Development of culture-specific generic intervention module and using the same in randomized control studies with larger effect size are needed in India for larger coverage of patients.

Impact of smoke-free law on tobacco consumption in Chandigarh: a community-based study.

BACKGROUND AND OBJECTIVES: Tobacco use is a major public health issue today and it is expected that 650 million smokers will die prematurely due to tobacco use. On 15 July 2007, Chandigarh became the first city to go smoke-free. However, there is no data on the impact of smoke-free law. The objective of the present study was therefore to study the pattern and prevalence of tobacco use and to examine the impact of smoke-free law in Chandigarh. MATERIALS AND METHODS: Total sample comprised of 3000 subjects. Socio-demographic data sheet along with initial two questions from the General questionnaire were administered on each individual. In addition, all the tobacco users underwent administration of the Fagerstrom test for nicotine dependence or the Fagerstrom test for smokeless tobacco (smokeless tobacco users). RESULTS: There were 43.9% tobacco users in the sample of 3000 subjects. Out of these tobacco users, 357 (11.9%) were pure smokers and 370 (12.3%) were using smokeless tobacco and 590 (19.6%) used both. The mean number of cigarettes/bidis smoked per day was 14 (+8.64) and the mean age of starting smoking was 19.41 (SD + 4.5 years).73.2% of population was aware about implementation of smoke-free law and all the participants (100%) reported smoking in public places. 43.4% smokers reported thoughts of quitting nicotine. INTERPRETATION AND CONCLUSION: Although the prevalence of tobacco use in Chandigarh is lower than the national average but the rates are still alarming and need attention. The findings of this study will help in designing tobacco control strategies and understanding the epidemiology of tobacco related health burden.