MATERIALS AND METHODS: This is a cross-sectional study on adolescents aged 13-18 years old. Upon ethical clearance obtained from UMMC Medical Ethics Committee, patients with colorectal, breast or lung cancer and their adolescent children were recruited from the Clinical Oncology Unit of University of Malaya Medical Centre. Respondents who gave consent completed a demographic questionnaire and the Pediatric Quality of Life Inventory, via the post, email, home visit or meetings at the clinics.
RESULTS: 95 adolescents from 50 families responded, giving a response rate of 88 percent. The adolescent's mean age was 16 years (ranging between 13-18 years). Adolescents with parental cancer had the lowest mean score in emotional functioning (p<0.05). Male adolescents had significantly higher quality of life overall and in physical functioning compared to female adolescents. Adolescents with a father with cancer had better school functioning compared to adolescents whose mothers had cancer. Families with household income of RM 5000 and above have significantly better quality of life compared to families with lower household income.
CONCLUSIONS: Adolescent sons and daughters of parents with a cancer diagnosis show lowered QOL, particularly with reference to emotional functioning and school performance. Addressing the needs of this young group has been slow and warrants special attention. Revisiting the risk and resilience factors of adolescents might also inform tailored programs to address the needs of this neglected adolescent population.
METHODS: The participants (aged 6-18 years) were 23 patients raised as males and 7 patients raised as females. Control data were obtained from representatives of the patients' siblings matched for age and gender. The Pediatric Quality of Life InventoryTM Version 4.0 (PedsQL) Generic Core Scales were used as the study tool.
RESULTS: In comparison with the reference data, the patient group had significantly lower overall PedsQL (p < 0.01) and school functioning (p < 0.01) scores. Also, the total PedsQL score was significantly lower in patients with DSD who were of female social sex as compared to the controls who were females. Family income, surgical procedures, degree of virilization, and mode of puberty did not influence the PedsQL scores.
CONCLUSION: This study revealed a poorer quality of life for patients with DSD as compared to the age-matched control group. This highlights the need for a skilled multidisciplinary team to manage this group of patients.
METHOD: The clinical trial was conducted at University Malaya Medical Centre between 2006 and 2008. The experimental group underwent a 4-week self management program, and the control group underwent usual care. Two years after the intervention, questionnaires were randomly posted out to the participants.
RESULTS: A total of 51 questionnaires returned. There were statistically differences between groups in psychological, self-care, mobility and participation aspects in PIPP (p<0.05). The experimental group reported having higher confidence to live with breast cancer compared to control group (p<0.05). There were significant between-group changes in anxiety scores at T2 (immediately after intervention) to T4 (two years later), and the differences in anxiety scores within groups between time point T2 and T4 were significantly different (p<0.05).
CONCLUSION: The SAMA program is potentially capable to serve as a model intervention for successful transition to survivorship following breast cancer treatment. The program needs to be further tested for efficacy in a larger trial involving more diverse populations of women completing breast cancer treatment.