Post-traumatic growth and cancer-related communication among adolescents having mothers with breast cancer.

PURPOSE: This study aimed to clarify the characteristics of post-traumatic growth (PTG) among adolescents having mothers diagnosed with breast cancer and the relationship between PTG and cancer-related communication with breast cancer survivors. METHODS: A cross-sectional study was conducted using anonymous self-report questionnaires with breast cancer survivors and adolescent children. PTG in adolescents was measured using the Japanese version of the revised PTG Inventory for Children (PTGI-C-R-J). Furthermore, hierarchical multiple regression analysis was implemented. To evaluate the impact of cancer-related communication on each subscale, the total score of cancer-related communication was switched with other subscales individually within the constructed model. RESULTS: A total of 97 breast cancer survivors and their adolescent children were included. The mean scores of the total PTGI-C-R-J and subscale scores for "personal strength," "new possibilities," "relating to others," "appreciation of life," and "spiritual change" were 9.0, 1.7, 1.8, 2.3, 2.4, and 0.9, respectively. The connection between PTG and cancer-related communication was partially clarified. The PTGI-C-R-J score was higher when adolescents shared more information regarding breast cancer with their mothers and lower when adolescents expressed more negative feelings toward their mothers. Communication regarding relationships with mothers was not correlated with PTG. CONCLUSIONS: Of all PTG domains, "relating to others" and "appreciation of life" were comparatively higher in adolescents. Health professionals should support breast cancer survivors to ensure that they convey appropriate information regarding their treatment plans and side effects to their adolescent children. Health professionals should help adolescent children express their negative feelings calmly and clearly.

Discontinuation of tyrosine kinase inhibitors in pediatric chronic myeloid leukemia.

BACKGROUND: The feasibility of tyrosine kinase inhibitor (TKI) discontinuation in pediatric chronic myeloid leukemia (CML) remains to be fully elucidated. PROCEDURES: TKI was prospectively discontinued in patients who were diagnosed with CML at <20 years of age, treated with TKI for ≥3 years, and sustained molecular response 4.0 (MR4.0) for ≥2 years. Molecular relapse was defined as a single loss of major molecular response (MMR) (BCR-ABL1IS >0.1%). Relapsed patients resumed the same TKI therapy administered before discontinuation. RESULTS: Twenty-two patients with chronic-phase CML were enrolled, and the median ages at diagnosis and at TKI discontinuation were 9 (range: 1-14) years and 16 (5-26) years, respectively. The median follow-up time after TKI discontinuation was 37 months (range: 24-41 months). The median duration of TKI treatment before discontinuation was 100 (42-178) months, and that of MR4.0 was 53.5 (25-148) months. The treatment-free remission (TFR) rate at 12 months was 50.0% (90% confidence interval: 31.7%-65.8%). Eleven patients experienced loss of MMR within 4 months after TKI discontinuation and resumed TKI as originally prescribed. No progression was observed, and all 11 patients regained MR4.0 after TKI resumption. No patient had a withdrawal syndrome. The quality-of-life analysis suggested that successful TFR may improve academic performance in some patients. In patients who discontinued TKI therapy before puberty, the possibility of improvement in growth velocity upon TKI discontinuation was observed. CONCLUSIONS: TKI could be discontinued safely in patients with pediatric CML showing a sustained deep MR.

Influence of perceived trauma on the cognitive processing model of posttraumatic growth among university students.

This study examined whether perceiving an event as a trauma influenced a cognitive processing model explaining posttraumatic growth (PTG). A cross-sectional questionnaire survey was conducted with 311 university students from eight universities in Japan. The participants provided information about the most stressful event they had experienced and completed the expanded version of the PTG Inventory, Core Belief Inventory, Event Related Rumination Inventory, and Cognitive and Emotional Processing from Disclosure Inventory. A multi-group structural equation modeling was conducted by dividing the participants into two groups depending on whether they identified the most stressful event as a trauma. The model with no constraint showed a good fit. The model with partial constraint showed a better fit than the models with no constraint or full constraint. The difference of the model was seen as a covariance between the Event Related Rumination Inventory and the Cognitive and Emotional Processing from Disclosure Inventory. The results demonstrated configural invariance and partial metric invariance. This indicated that PTG would be recognized irrespective of whether the event was perceived as a trauma. This study also indicated that different factors out of the model could be associated with the ruminative process and disclosure process. The importance of focusing on the process of PTG, regardless of an individual's perception of the event, was emphasized, especially for factors related to rumination and disclosure.

Impact of respite care on health-related quality of life in children with medical complexity: A parent proxy evaluation.

PURPOSE: This study examined the impact of respite care received by children with medical complexity (CMC) on their health-related quality of life (HRQOL). We hypothesized that out-of-home respite care would increase both opportunities to engage in activities and participation with non-family members and help with acquiring autonomy and social skills. DESIGN AND METHODS: This cross-sectional study of CMC aged between 8 and 18 years living at home used a web-based questionnaire survey that parents living with the target CMC answered for proxy evaluation of CMC's HRQOL (KIDSCREEN-27). We asked 3142 parents to participate in the study through 237 special-needs schools throughout Japan. Path analysis was used to estimate the variation in each aspect of HRQOL with respite care time of in-home care services, day care services, short-stay services, and school time. RESULTS: We analyzed the responses from 618 parents of CMC. The results showed that respite care by day care services and special-needs schools increased "physical well-being," "psychological well-being," and "peers and social support," which are components of the HRQOL. Furthermore, respite care at schools had an impact on "school environment." CONCLUSIONS: Respite care provided by special-needs schools and day care services has implications not only in terms of relief for caregivers but also in improving the HRQOL of CMC. PRACTICE IMPLICATIONS: Nurses can provide respite care that does not require parental accompaniment at school or day care facilities, which can lead to CMC's involvement in fostering autonomy and social skills. (249/250 words).

Development and validation of a Japanese version of the TRANSITION-Q.

BACKGROUND: The evaluation of transition readiness is indispensable for long-term follow-ups of adolescent patients with childhood-onset chronic diseases (CCD). We developed a Japanese version of the TRANSITION-Q (TRANSITION-Q-J) and used it to assess Japanese patients with CCD. METHODS: The TRANSITION-Q-J was developed through forward and backward translations followed by cognitive interviews with five adolescent patients. The field test was conducted with 125 adolescent patients, and a retest was conducted with 113 adolescent patients. RESULTS: Confirmatory factor analysis supported the two-factor analysis model including F1 (communication and self-management) and F2 (examination behavior). Sufficient internal consistency and test-retest reliability were demonstrated among the total 14 items, F1, and F2 (Cronbach's α > 0.80, intraclass correlation coefficient > 0.85). Convergent and discriminant validity for the 14 items and F1 were acceptable; however, F2 did not correlate significantly with the Rosenberg Self-Esteem Scale and Independent Consciousness Scale. Regarding known-groups validity, the older group had a significantly higher mean TRANSITION-Q-J score (50.05) than the younger group (43.28; P = 0.04). The same results were found for both F1 and F2. CONCLUSIONS: The TRANSITION-Q-J for adolescent patients with CCD was developed and its reliability and validity were verified. This scale is easy to administer. In addition to being a tool for transition period support, it could be used to verify effective factors and in program outcome evaluation, including intervention studies.

Validation study of the Japanese version of MD Anderson Symptom Inventory for Brain Tumor module.

OBJECTIVE: The MD Anderson Symptom Inventory for Brain Tumor (MDASI-BT) module is a widely used instrument for measuring symptom burden and interference of daily activities in brain tumor patients. This study aims to develop and validate its Japanese version (MDASI-BT-Japanese). METHODS: Following forward and backward translation of the original MDASI-BT into Japanese, understandability and feasibility were assessed by cognitive debriefing. Subsequently, patients with brain tumors were asked to fill out MDASI-BT-Japanese and European Quality of Life-5 Dimensions (EQ-5D). Feasibility, reliability and validity of MDASI-BT-Japanese were assessed. RESULTS: Cognitive debriefing confirmed overall ease of completion and good understandability. The study population composed of 140 patients with brain tumors (most commonly gliomas). The mean symptom severity score and mean interference score were 1.9 ± 1.7 and 2.8 ± 2.7, respectively. The top items included distress and drowsiness for symptom severity and general activity and work for interference. The median time required was 4 minutes (range, 0.5-30), and missing values were seen in 1%. Internal consistency was proven by excellent Cronbach's coefficient alpha (0.94 for symptom severity, 0.92 for interference). Test-retest reliability was assessed with acceptable intra-class correlation coefficient (mean, 0.76). Correlation efficient ranged between 0.7 and 0.9 for convergent validity. Known-group validity was confirmed by significantly different mean symptom severity score and mean interference score among patients with different performance status. As evidence of concurrent validity, MDASI-BT-Japanese correlated with EQ-5D in the hypothesized magnitude and direction. CONCLUSIONS: The newly developed MDASI-BT-Japanese has demonstrated feasibility, reliability and validity in evaluation of clinical benefit in Japanese-speaking brain tumor patients.

Mediating effect of resilience during pregnancy on the association between maternal trait anger and postnatal depression.

OBJECTIVE: The association between anger and postnatal depression has been reported in previous studies. However, whether this association is mediated by resilience is unknown. Resilience is a dynamic process of individuals' positive adaptation to stress and adversity. This study investigated the mediating effect of resilience during pregnancy on the association between trait anger during pregnancy and postnatal depression at one-month. METHODS: A longitudinal study from the third trimester to one-month postnatal using online self-report questionnaires was conducted in two maternity clinics in Tokyo. Trait anger and resilience during pregnancy and postnatal depression at one-month were measured by the State-Trait Anger Expression Inventory, resilience test, and the Edinburgh Postnatal Depression Scale. To test the hypothesis, Structural Equation Modeling was used. RESULTS: Data of 531 participants were analyzed. The final Structural Equation Modeling model demonstrated that resilience during pregnancy had a partial mediating effect on the association between trait anger during pregnancy and postnatal depression at one-month. Trait anger was significantly associated with resilience during pregnancy (ß = -0.28) and postnatal depression (ß = 0.24). Resilience during pregnancy was significantly associated with postnatal depression (ß = -0.20). CONCLUSIONS: This study demonstrated that resilience during pregnancy had a partial mediating effect on the association between trait anger during pregnancy and postnatal depression at one-month. The findings highlight the importance of identifying pregnant women with high trait anger and providing interventions to enhance their resilience to decrease the risk of postnatal depression.

A longitudinal study of bonding failure related to aspects of posttraumatic stress symptoms after childbirth among Japanese mothers.

BACKGROUND: Posttraumatic stress symptoms (PTSS) after childbirth may affect mother-infant bonding. This study examined the relationship between aspects of PTSS after childbirth and bonding failure for mothers at 1 month and 4 months after delivery. METHODS: This longitudinal study surveyed 130 mothers at 1 month (T1) and 4 months (T2) after delivery. We performed multiple regression analysis with the Postpartum Bonding Questionnaire (PBQ) as the dependent variable and the Impact of Event Scale-Revised (IES-R), Edinburgh Postnatal Depression Scale (EPDS), Relationship Questionnaire (RQ), Family Adaptation, Partnership, Growth, Affection, and Resolve score (F.APGAR), and demographic data as independent variables. RESULTS: The rate of mothers with an IES-R score of ≥ 25 was 6.2% at T1 and 3.8% at T2. The IES-R and the EPDS were relevant factors for the PBQ at T1. The IES-R was not a relevant factor, but the EPDS was a relevant factor for the PBQ at T2. The IES-R at T1 was not a predictor for the PBQ at T2. The PBQ at T1 was the largest predictor for the PBQ at T2, when compared with the EPDS, F.APGAR, and dismissive attachment pattern (RQ) at T1. CONCLUSIONS: PTSS after childbirth had a strong influence on bonding failure at T1. However, the important factor affecting bonding failure was not PTSS after childbirth, but depression at T2. If PTSS after childbirth are accompanied by depression at T2, bonding failure may be affected. Bonding failure affected by PTSS after childbirth at T1 could affect bonding failure at T2. Health professionals should assess the degree of PTSS after childbirth and start to care for mothers at T1.

Comparison of child and family reports of health-related quality of life in pediatric acute lymphoblastic leukemia patients after induction therapy.

BACKGROUND: This study aims at determining the health-related quality of life (HRQOL) of children with acute lymphoblastic leukemia (ALL) after the induction therapy, assessing the agreement between child self-reports and family proxy-reports HRQOL, and determining the factors related to this agreement, especially child age, family attendance, and children's social relationships beyond the family. METHODS: We analyzed questionnaire data (2012-2017) from the Japanese Pediatric Leukemia/Lymphoma Study Group's clinical study (ALL-B12). Participants were children with B-cell precursor ALL aged 5-18 and their family members, who mostly took care of the child during hospitalization. Participants answered the Pediatric Quality of Life Inventory™ (PedsQL™) Generic Core Scales (PedsQL-G), and Cancer Module (PedsQL-C) to measure pediatric HRQOL. We calculated the differences between child self-reported and family proxy-reported subscale scores along with intraclass correlation coefficients (ICC). We conducted multiple regression analyses according to all participant pairs and age groups (young children, school age, and adolescents), with ICCs for all PedsQL-G subscales (ICC-G) and all PedsQL-C subscales (ICC-C) as the outcome variables. RESULTS: Five hundred twenty-two pairs of children and their families were analyzed. We observed a moderate level of agreement on most PedsQL subscales between child self-reports and family proxy-reports; however, worry had the weakest agreement for all PedsQL subscales (ICC = .32, 95% confidence interval = .24-.40). The agreement of ICC-C was positively related to family attendance in the hospitalization, only for the young children group (B = .185, p = .003). CONCLUSIONS: We observed some differences between child self-reports and family proxy-reports of HRQOL of children with ALL. Both child self-reports and family proxy-reports captured HRQOL in the induction therapy. We suggest that attending to young children's hospitalization affects the level of agreement between reports on their HRQOL.

Impacts of physical late effects on presenteeism in childhood cancer survivors.

BACKGROUND: Many childhood cancer survivors (CCSs) experience physical late effects related to their cancer types and treatment modalities. Physical late effects are an important factor in various occupational outcomes among CCSs. However, the relationship between physical late effects and presenteeism has remained unclear. This study aimed to estimate the impacts of physical late effects on presenteeism among employed CCSs. METHODS: Childhood cancer survivors replied to a questionnaire regarding presenteeism, and their attending physicians assessed their physical late effects between September 2014 and December 2015. The Work Limitations Questionnaire was used to measure presenteeism. Propensity score analysis and a generalized linear model were used to adjust covariates related to physical late effects and / or presenteeism. RESULTS: Of the 125 questionnaires distributed, 114 were returned. The data from 61 employed CCSs were analyzed. After controlling for covariates by propensity score analysis and generalized linear model, there were no significant differences in presenteeism between employed CCSs with either no or single physical late effects. However, employed CCSs with multiple physical late effects reported higher scores in Output (Estimate = 9.3, P = 0.041), Physical Demands (Estimate = 12.2, P = 0.020), and Productivity Loss scores (Estimate = 2.4, P = 0.045) on the Work Limitations Questionnaire than employed CCSs with no physical late effects. CONCLUSIONS: Employed CCSs with multiple physical late effects were at an increased risk for presenteeism. Healthcare and social welfare systems should be established to provide vocational assistance for CCSs after being employed to alleviate presenteeism.

A childhood immunization education program for parents delivered during late pregnancy and one-month postpartum: a randomized controlled trial.

BACKGROUND: Improved immunization rates have reduced the incidence of vaccine-preventable diseases (VPDs) in advanced nations. Japan's unique vaccination system classifies vaccines into routine vaccines ostensibly required under the Preventive Vaccination Law and recommended but optional vaccines, although all vaccines are in fact voluntary. In Japan, low immunization rates, particularly for optional vaccines, have resulted in high rates of sequelae and death. The decision as to whether a child will receive a vaccine depends on the parents, who must obtain information, make inquiries, and make the required payment, the last of which is a major barrier. This randomized, controlled trial was conducted to evaluate the effectiveness of an immunization education program designed to meet mothers' needs. METHODS: This randomized controlled trial assigned pregnant women to intervention or control groups. The intervention was individual education sessions involving the children's fathers in shared decision-making on whether or not to immunize their child. A survey was conducted before and after the intervention. Data were analyzed using the intention-to-treat principle. RESULTS: Of 225 pregnant women, 175 (78%) participated and 171 replied to the post-survey. At age 3 months, intervention infants had higher self-reported immunization rates for hepatitis B virus vaccine (76% vs. 49%; P < 0.001) and rotavirus vaccine (84% vs. 68%; P = 0.019) than control group infants. The percentage of parents intending to vaccinate their infants was higher in the intervention group (77% vs. 52%; P < 0.01). Improvements in scores for basic knowledge (mean [SD]: 5.5 [3.6] vs. 3.0 [3.8], range: 10-30; P < 0.001), advanced knowledge (mean [SD]: 5.1 [2.4] vs. 2.8 [2.5], range: 5-15; P < 0.001), and health literacy regarding immunization (mean [SD]: 0.5 [0.8] vs. 0.2 [0.6], range: 1-5; P < 0.01) were higher in the intervention group. The rate of decision making by both parents (68% vs. 52%; P < 0.05) was higher in the intervention group. CONCLUSIONS: Our findings confirmed the program's effectiveness. The intervention improved immunization rates, the percentage of parents intending to vaccinate their infants and knowledge scores. Interventions which directly and indirectly involved fathers in shared decision-making on whether to immunize their child were effective, as were individualized interventions that provided parents with access to up-to-date information. TRIAL REGISTRATION: UMIN000012575 . Registered 14 December 2013 (The study was prospectively registered).

Intimate Partner Violence, Negative Attitudes Toward Pregnancy, and Mother-to-Fetus Bonding Failure Among Japanese Pregnant Women.

We examined the associations between intimate partner violence (IPV) before and during pregnancy, negative attitudes toward pregnancy, and mother-to-fetus bonding. Participants were 636 pregnant women in the third trimester, who completed the Mother-to-Infant Bonding Scale, Violence Against Women Screen, and ad hoc questions (for IPV before pregnancy, negative attitudes, and demographics). We found association between IPV during pregnancy and mother-to-fetus bonding failure was mediated by negative attitudes toward pregnancy in the third trimester. IPV before pregnancy was associated with negative attitudes at the beginning of pregnancy, which predicted negative attitudes in the third trimester and mother-to-fetus bonding failure. Careful assessments and psychological interventions are needed to reduce negative attitudes toward pregnancy among abused women in antenatal health settings to prevent mother-to-fetus bonding failure.

Validation of family conflict scales for family caregivers of persons with dementia in long-term care facilities and exploration of family conflicts and support.

ABSTRACTBackground:The aim of the study was to develop a family conflict scale for family caregivers of persons with dementia in long-term care facilities and to explore the relationship between family conflicts and family support. METHODS: The scale was developed through forward- and back-translations, interviews with 12 staff members in long-term care facilities, and cognitive interviews with 12 family caregivers who met operational definitions in this study. The test was conducted with 334 family caregivers and a retest was conducted with 318 family caregivers who had indicated willingness to participate further. RESULTS: The internal consistency was relatively high for all subscales (Cronbach's α >0.87); sufficient retest reliability was demonstrated for all subscales (intraclass correlation coefficient >0.69). Confirmatory factor analysis supported a three-factor model. Convergent and discriminant validity for each of the family conflict scale subscales, family APGAR, and the Symptom Check List-90 Items-Revised were acceptable. Family caregivers who received no family assistance for caregiving perceived more conflict in their family than those receiving family assistance. CONCLUSIONS: The Japanese version of the family conflict scale for family caregivers of persons with dementia in long-term care facilities was developed. The reliability and validity of the scale were verified. When providing support to family caregivers in long-term care facilities, it is necessary to consider the family from multiple viewpoints, including family conflicts and support conditions from other family members.

Employment status and termination among survivors of pediatric brain tumors: a cross-sectional survey.

BACKGROUND: Some childhood cancer survivors experience employment difficulties. This study aimed to describe pediatric brain-tumor survivors' employment status. METHODS: A cross-sectional, observational study was conducted, with questionnaires distributed to 101 pediatric brain-tumor survivors (aged 15 years or older) and their attending physicians from nine institutions in Japan. We compared category and time-series histories for participants' first-time employment using national census information. Factors related to delayed employment or early employment termination were examined using survival-time analyses. RESULTS: Excluding students and homemakers, 38 brain-tumor survivors (median age 27 years, with 15 years since diagnosis) were of working age. Of these, 12 (32%) were unemployed and 9 (24%) had never been employed. First-time employment occurred later for brain-tumor survivors than the general population, particularly in those with lower educational levels. The number of brain-tumor survivors whose first job was terminated within the first year was higher than that for the general population, particularly in male survivors and germ cell-tumor survivors. Brain-tumor survivors described their working patterns (irregular), job types (specialist or professional), reasons for early termination (unsuitable job), and thoughts about working (they wished to serve their communities but lacked confidence). CONCLUSION: Brain-tumor survivors are associated with high unemployment rates and multiple unemployment-related factors. Education and welfare systems should identify individual methods of social participation for this group.

Quality of life after living donor liver transplant for biliary atresia in Japan.

BACKGROUND: Health-related quality of life (HRQOL) is an important outcome in solid organ transplantation. This study evaluated and explored the factors of generic and transplant-specific HRQOL in Japanese pediatric and adolescent patients with biliary atresia (BA) after living donor liver transplant (LDLT). METHODS: A cross-sectional survey using anonymous questionnaires was completed between April and July 2015. Patient medical records were accessed. The Japanese version of Pediatric Quality of Life InventoryTM Generic Core Scales and Transplant Modules (child self-report and parent proxy-report) was administered. RESULTS: Participants consisted of 75 patients (mean age at survey, 9.6 years) and 74 parents. Japanese patients reported higher generic and transplant-specific HRQOL (total score) than that reported by US patients with BA after LT (US I; age at survey, 7.2 years) and by US patients after solid organ transplant (US II; age at survey, 11.3 years; LT, 53.8%; effect size, 0.55-0.96). Japanese parents, however, rated their children's generic HRQOL (total score) similar to that rated by the US I and II parents (0.13 and 0.30, respectively) and reported lower transplant-specific HRQOL (total score) than that reported by US II (0.26). Although the number of types of prescribed drugs was a common factor in HRQOL, most demographic and medical factors (e.g. child's age at survey and consultation frequency) varied with reporter (i.e. patients and parents). CONCLUSIONS: The levels and factors of generic and transplant-specific HRQOL of Japanese pediatric and adolescent patients with BA after LDLT varied with reporter (i.e. patients or parents).

A Qualitative Assessment of Adolescent Girls' Perception of Living with Congenital Heart Disease: Focusing on Future Pregnancies and Childbirth.

PURPOSE: Congenital heart disease (CHD) is the most common birth anomaly in Japan, occurring in approximately 10.6 of every 1,000 live births. Advancements in medical and surgical care have increased births by women diagnosed with CHD. The study's purpose was to examine the perceptions of pregnancy and childbirth among adolescent girls with CHD. DESIGN AND METHODS: Twelve semi-structured interviews were conducted, and the data were analyzed using a modified grounded-theory approach. RESULTS: Three categories and 16 subcategories were extracted. Adolescent girls with CHD reported feelings of distress and anxiety while struggling with their disease, and feared how their disease might negatively influence their future pregnancy. These concerns were related to a desire to become familiar with CHD. The girls also explored how their disease would be managed during pregnancy and childbirth. Overall, these perceptions were influenced by the girls' acceptance of their disease, and support from family, friends, and healthcare professionals. CONCLUSIONS: Healthcare professionals might assess adolescent girls' awareness of their disease before discussing pregnancy and childbirth risks. To encourage them to understand and cope with their disease, healthcare professionals might provide interventions tailored to the timing, stage, and degree of pregnancy and childbirth awareness. This could allow safer life planning, especially concerning pregnancy and childbirth decisions. PRACTICE IMPLICATIONS: To address adolescent girls' needs, healthcare professionals should continuously assess their awareness of pregnancy and childbirth as well as their psychological status, alongside CHD issues.

Development of the Japanese version of the Pediatric Quality of Life Inventory™ Transplant Module.

BACKGROUND: Health-related quality of life (HRQOL) is an important outcome in pediatric solid organ transplantation. Considering the emerging problems after transplantation, an evaluation of transplant-specific aspects of HRQOL is essential, but no validated HRQOL measure is available in Japan. The aim of this study was therefore to develop the Japanese version of the Pediatric Quality of Life Inventory™ (PedsQL) Transplant Module Child Self-Report and to investigate its feasibility, reliability, and validity. METHODS: Based on the PedsQL linguistic validation process, the Japanese version of the PedsQL Transplant Module was developed through translation and cognitive interviews (patient testing). The scale's reliability and validity were investigated, using statistical analyses of field tests of the target population. RESULTS: Eighty-seven pairs of pediatric liver-transplant recipients and their parents participated in the field test. The pediatric patients completed the measure in 3-7 min, and the rate of missing items was low (0.27%). Excellent internal consistency and test-retest reliability were confirmed. Known-groups validity, concurrent validity, and convergent and discriminant validity also were confirmed. CONCLUSIONS: Excellent feasibility, reliability, and validity of this Japanese self-report version of the PedsQL Transplant Module Child Self-Report were verified. As a measure of transplant-specific aspects of HRQOL in Japanese pediatric patients who have undergone organ transplants, the Japanese version of the PedsQL Transplant Module is appropriate for use in clinical and research settings.

Health-related quality of life in Japanese children with acute lymphoblastic leukemia during and after chemotherapy.

BACKGROUND: Quality of life (QOL) as a treatment outcome has not yet been evaluated among patients receiving a specific treatment regimen by treatment phase in a consistent manner. This exploratory cross-sectional study evaluated the QOL of children with acute lymphoblastic leukemia (ALL) receiving one of the most popular treatment regimens in Japan (Japan Association of Childhood Leukemia Study ALL-02 revised protocol). METHODS: Children aged 5-18 years with newly diagnosed B-cell precursor ALL were included. The Pediatric Quality of Life Inventory™ 4.0 Generic Core Scales (PedsQL-J) were completed by children with ALL and their siblings, as well as by age- and sex-matched healthy controls. PedsQL Cancer Module (PedsQL-C) scores were also collected from children with ALL. RESULTS: QOL in children with ALL of the consolidation phase group was significantly decreased compared with that of healthy controls, except in the area of emotional functioning. Regarding the maintenance phase group, QOL impairment was noted in the physical and school functioning, but no differences were noted in social functioning. The off-treatment group had a large effect size only for physical functioning, and the social functioning score was even better in children with ALL than in matched controls. QOL of children with ALL differed with treatment phase. Effect size varied with function and treatment phase. CONCLUSIONS: QOL may change with the progression of treatment, and the timing of these changes varied according to function and problem.

Factors influencing mother-child communication about fathers with neurobehavioural sequelae after brain injury.

OBJECTIVE: The present study clarified factors related to mother-child communication openness when fathers suffer neurobehavioural sequelae after stroke or traumatic brain injury. RESEARCH DESIGN: A cross-sectional study using self-report anonymous questionnaires was conducted. METHODS AND PROCEDURES: Forty-one mothers with 6-22-year-old children participated. The questionnaire examined personal factors (mother's psychological distress), social/family factors (family support functioning), illness-related factors (father's time at home and neurobehavioural sequelae severity) and mother's perceived level of open communication. Multiple regression was used to analyse factors related to mother-child communication openness. RESULTS: Mother-child open communication was explained by family support functioning (ß = 0.449), father's time at home (ß = -0.325) and mother's psychological distress (ß = -0.303). Neurobehavioural sequelae severity was not associated with mother-child open communication. CONCLUSIONS: Personal, social/family and illness-related factors were related to mother-child communication about paternal illness. Professionals should promote optimal family support functioning, connect families with external resources and assess families' interaction processes.

Physio-psychological Burdens and Social Restrictions on Parents of Children With Technology Dependency are Associated With Care Coordination by Nurses.

PURPOSE: To determine the association between parental care burdens and care coordination provided by nurses for children with technology dependency, specifically regarding physio-psychological burdens and social restrictions. DESIGN AND METHODS: A cross-sectional study was conducted between October and November 2015. Participants were recruited via home-visit nursing stations, social worker offices, and special-needs schools. A total of 246 parents of children with technology dependency completed anonymous self-report questionnaires. Parental burden was measured using the Zarit Burden Interview. Care coordination for children with technology dependency was examined using items extracted from focus group interviews involving three nursing administrators at home-visit nursing stations, two social workers, and a coordinator of school education for children with special health care needs. Multiple regression analysis was performed to examine the relationship between parental burden and care coordination among 172 parents who contracted with visiting nurses. RESULTS: Parents and children with nursing support were significantly younger and had higher medical care needs and higher parental role strain than those without nursing support. Care coordination from nurses predicted reduced parental burden, role strain, and personal strain (ß=-0.247, p=0.002; ß=-0.272, p=0.001; ß=-0.221, p=0.009, respectively). CONCLUSION: Nurses' care coordination appears to be associated with a reduction in parents' care burden resulting from home medical care of children with technology dependency, especially the social restrictions and physio-psychological burdens. PRACTICE IMPLICATIONS: Strengthening nursing functioning as care coordinators may contribute to reducing care burdens for parents of children with technology dependency.