Adaptation and measurement invariance of the 13-item version of Patient Activation Measure across Japanese young adult cancer survivors during and after treatment: A cross-sectional observational study.

The 13-item version of the Patient Activation Measure (PAM-13) is a frequently used measure that gauges the level of self-management in an individual. However, its applicability across Japanese young adult (YA) cancer survivors during and after their treatment remains unclear. This study confirmed the psychometric properties and measurement invariance of the Japanese version of PAM-13 across them during and after treatment. We used cross-sectional observational data collected through an online survey from 500 survivors in January 2022. We determined feasibility, internal consistency, concurrent validity against physical fatigue and depression, and known-groups validity regarding educational level. Structural validity was also found using Rasch analysis for survivors both during and after treatment. Furthermore, measurement invariance of the PAM-13 was examined using multiple-group structural equation modeling. Rasch fit statistics were acceptable for the unidimensional structure of PAM-13. It was found to be internally consistent for survivors during (McDonald's omega: 0.88, item-total correlations: 0.48-0.62) and after treatment (McDonald's omega: 0.90, item-total correlations: 0.32-0.72). The PAM-13 was concurrently valid with physical fatigue (Pearson's product-moment correlation coefficients: -0.25 and -0.18 for survivors during and after treatment, respectively) and depression (Pearson's product-moment correlation coefficients: -0.20 and -0.19 for survivors during and after treatment, respectively). Known-groups validity showed that survivors after treatment with a higher educational level reported a higher patient activation score than those with a lower educational level (p = 0.001); however, there was no difference due to the education level between survivors during treatment. The configural and metric invariance of the PAM-13 were confirmed, but scalar invariance was rejected. It was found that the PAM-13 is applicable for Japanese YA cancer survivors during and after treatment. However, given the lack of scalar invariance in the PAM-13, the scores of particular items between YA cancer survivors during and after treatment should be interpreted with caution.

Impact of flexible work arrangements on job resignation after cancer diagnosis among Japanese young adult cancer survivors.

PURPOSE: Many workers had flexible work arrangements during the COVID-19 pandemic. This study aimed to identify the association between flextime and remote working and job resignation among Japanese young adult cancer survivors after diagnosis. METHODS: This cross-sectional observational study was conducted using an online survey with 401 Japanese young adult cancer survivors diagnosed with adult-onset cancer and aged 20-39 years at the time of the survey in January 2022. A multivariable Cox regression analysis was performed to analyze the impact of flextime and remote working on job resignation. RESULTS: In the sample, 264 participants (65.8%) were female, and 185 (46.1%) had been diagnosed with cancer between 1 and 5 years ago. After adjusting for potential confounders, the multivariable Cox regression analysis revealed that young adult cancer survivors using remote working only (HR 0.44, 95% CI 0.21-0.96, p = 0.04) and both flextime and remote working (HR 0.37, 95% CI 0.21-0.64, p < 0.01) experienced a lower risk of job resignation after cancer diagnosis compared to those who did not use flextime and remote working. CONCLUSIONS: Young adult cancer survivors who used remote working only or remote working combined with flextime could reduce their risk of job resignation after a cancer diagnosis. IMPLICATIONS FOR CANCER SURVIVORS: This study showed that having the option of remote working can be important for young adult cancer survivors' continuing employment. Furthermore, social welfare systems need to promote a workplace culture and climate that allows remote working.

Reliability and Validity of the Japanese Version of the Short Form of the Expanded Version of the Posttraumatic Growth Inventory (PTGI-X-SF-J): A Cross-Sectional Study.

A Japanese version of the short form of the expanded Posttraumatic Growth Inventory (PTGI-X-SF-J) was developed in this study, as the extended version captures broader, more diverse personal growth perspectives, such as existential spiritual growth. We collected cross-sectional data from 408 (first sample) and 284 (second sample) Japanese university students using the expanded version of the Posttraumatic Growth Inventory (PTGI-X-J). Exploratory factor analysis (EFA) was performed with the first sample and confirmatory factor analysis (CFA) with the second; reliability and validity were examined. The short-form version resulting from the EFA and CFA comprised 10 items and five factors. Cronbach's alpha for the PTGI-X-SF-J total and subscale scores ranged from 0.671 to 0.875. The intraclass correlation coefficient for the total and subscale scores between the PTGI-X-J and PTGI-X-SF-J ranged from 0.699 to 0.821. Regarding external validity, no significant correlation was found between posttraumatic growth and posttraumatic stress disorder checklists. Due to its brevity, the PTGI-X-SF-J can help assess diverse spiritual and existential personal growth experiences among clients, patients, and trauma survivors while reducing physical and psychological burdens.

Reliability and validity of the Japanese version of the Pediatric Quality of Life Inventory Infant Scales.

BACKGROUND: PedsQL Infant Scales (PedsQL-I) are used to assess parent-reported health-related quality of life for children younger than 2 years. We determined the feasibility, reliability, and validity of the Japanese version of the PedsQL-I. METHODS: A total of 183 participants (parents) with infants aged 1-30 months were recruited from 8 day care centers and one pediatric clinic. Participants completed the PedsQL-I (infants aged 1-18 months), the PedsQL-I and the PedsQL-Toddler version (infants aged 19-30 months), and the Kessler-6 psychological distress scale (all participants). We determined feasibility, internal consistency, test-retest reliability, concurrent validity, convergent and discriminant validity, known-groups validity with regard to acute and chronic illness, and relative and transitional validity with PedsQL-Toddler for the use in infants aged 25-30 months. RESULTS: All subscales were internally consistent (Cronbach's alpha for 1-12 months: 0.88-0.98 and for 13-24 months: 0.85-0.97); test-retest reliability was acceptable (intra-class correlation coefficients > 0.40); and all scales were concurrently valid with the PedsQL-Toddler version (Pearson's product-moment correlation coefficient for the total score = 0.74). The scales' convergent and discriminant validity were acceptable (scaling success rate > 80%). Validation for known-groups showed that the Physical Health Summary score was sensitive to acute and chronic disease, the Psychosocial Health Summary score was sensitive to neither acute nor chronic disease, and the total score was sensitive to acute disease. Relative validity showed a ratio of 1.74 for the squared t values for the total score. CONCLUSIONS: The PedsQL-I is suitable for assessing health-related quality of life in infants aged 1-24 months in prospective studies.

Anxiety and related factors among parents of patients with breast cancer after surgery in Japan: A multi-informant and multilevel study.

AIM: Anxiety and its correlates in parents of patients with breast cancer have rarely been studied. We explored anxiety among parents of postoperative patients with breast cancer and its relationship with parents' social support and care needs and patients' anxiety. METHODS: A cross-sectional survey using self-report questionnaires and medical records was conducted among patients with breast cancer after surgery and their parents at four designated cancer care hospitals between September 2015 and June 2016. Anxiety was measured using the Hospital Anxiety and Depression Scale (HADS). Parents provided information about social support and care needs. Multilevel analysis was performed on patient-parent paired data controlling for patient-level variation. RESULTS: Participants included 107 patients, 83 mothers, and 51 fathers. The mean HADS anxiety scores reported by mothers and fathers were 7.2 and 6.5, respectively, which were higher than patients' HADS anxiety scores. Fulfillment of important care needs was related to lower anxiety among mothers and fathers (estimate = -1.38, p = .01). Lower family support and higher patient anxiety were associated with higher anxiety in mothers, but not fathers. CONCLUSIONS: Parents of patients with breast cancer had high anxiety. Communication, providing cancer-related information, and fulfilling care needs can alleviate anxiety in parents of patients with breast cancer after surgery. Furthermore, increasing family support and decreasing patients' anxiety are essential to alleviating mothers' anxiety.

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 cGVHD on socioeconomic outcomes in survivors with pediatric hematopoietic stem cell transplant in Japan: a cross-sectional observational study.

We conducted a cross-sectional observational study investigating socioeconomic status among Japanese survivors of pediatric hematopoietic stem cell transplantation (HCT) and the impact of chronic graft-versus-host disease (cGVHD) on socioeconomic outcomes, which are topics not well explored in the previous research. We collected data on socioeconomic outcomes from 442 HCT survivors through a questionnaire and obtained demographic and clinical information from their attending physicians and a national database between February 2013 and November 2014. We used logistic regression analysis to examine the relationship between cGVHD and socioeconomic outcomes in allogeneic HCT (allo-HCT) survivors. Most survivors did not experience socioeconomic problems. Nevertheless, allo-HCT survivors with cGVHD aged 8-15 years had poorer economic status (p = 0.013), and allo-HCT survivors with cGVHD aged ≥ 16 years were more likely to have never married (p = 0.034) and less likely to have more than a high school education (p = 0.023), compared with allo-HCT survivors without cGVHD. Thus, cGVHD in Japanese allo-HCT survivors was a risk factor for economic difficulties for those aged 8-15 years, and for never marrying and low educational achievement in those aged ≥ 16 years.

Reliability and validity of the Japanese version of the Caregiving Interface Work Scale in employed Japanese family caregivers.

AIM: This study aimed to develop a Japanese version of the Caregiving Interface Work Scale (J-CIWS) for use with employed Japanese family caregivers. METHODS: Permission was obtained from the developer of the original CIWS. The CIWS contains 20 items: 10 measuring care interface work (CIW) and 10 measuring work interface care (WIC). Responses are measured on a five-point Likert scale. The J-CIWS was developed through forward- and back-translation and cognitive interviews of employed family caregivers. An internet survey was conducted with 116 employed family caregivers, and 78 participants answered a retest. Questionnaire items included the J-CIWS and demographic factors. Factor analysis was conducted to determine the J-CIWS factor structure. Validity was assessed based on known-groups, convergent and discriminant validity. Internal consistency was examined by calculating Cronbach's α. Test-retest reliability was examined by calculating the Pearson's correlation coefficient. RESULTS: The mean participant age was 50.3 years; 74 (63.8%) were male. The average weekly working and caregiving hours were 41.6 and 12.1 h, respectively. Confirmatory factor analysis supported the original two-factor model. High internal consistency (Cronbach's alpha >0.90) and sufficient test-retest reliability (weighted κ score >0.45) were demonstrated for both subscales. Convergent and discriminant validity were acceptable for the two subscales (CIW and WIC). CONCLUSIONS: This study confirmed the usefulness of the CIWS within a Japanese context. The J-CIWS may be useful for evaluating the extent of the conflict between work and care among employed family caregivers. Geriatr Gerontol Int 2021; 21: 254-261.

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.

Randomized comparative study of child and caregiver responses to three software functions added to the Japanese version of the electronic Pediatric Quality of Life Inventory (ePedsQL) questionnaire.

BACKGROUND: Patient-reported outcomes (PROs) refer to any report of the status of a patient's health condition, health behavior, or experience with healthcare directly from the patient, without interpretation of the patient's response by a clinician or any other external party. While many PROs, such as the Pediatric Quality of Life Inventory (PedsQL), were originally administered in paper-and-pencil format, these are now available as electronic versions (ePROs). Although ePROs might well have used the same structure as their paper versions, we developed an alternate ePedsQL incorporating three software functions: 1) a non-forcing non-response alert, 2) a conditional question branch of the School Functioning Scale that only displays for (pre) school children, and 3) a vertical item-by-item display for small-screen devices. This report evaluated the effect of these functions on item non-response rate, survey completion time, and user experience. METHODS: All surveys were conducted via the online/computer mode. We compared the dynamic format containing the three functions with the basic format in a randomized comparative study in 2803 children and 6289 caregivers in Japan. RESULTS: We found that the non-response alert lowered the item non-response rate (0.338% to 0.046%, t = - 4.411, p < 0.001 by generalized linear mixed model analysis). The conditional question branch had mixed effects on survey completion time depending on the respondents' age. Surprisingly, respondents rated the vertical question display for handheld devices less legible than the matrix format. Further, multigroup structural equation modelling revealed that the same configuration for both formats showed an acceptable fit (CFI 0.933, RMSEA 0.060, SRMR 0.038) but the errors of observed variables were larger for the dynamic format than the basic format. CONCLUSIONS: We confirmed the robustness of the ePedsQL in different formats. The non-response rate of ePedsQL was very low even in the absence of an alert. The branch and item-by-item display were effective but unnecessary for all populations. Our findings further understanding of how humans respond to special software functions and different digital survey formats and provide new insight on how the three tested functions might be most successfully implemented.

Simple change in logistic procedure improves response rate to QOL assessment: a report from the Japan Children's Cancer Group.

BACKGROUND: Reducing non-completion of quality-of-life assessment in clinical trials is an important challenge in obtaining accurate data and unbiased interpretation of patients' quality-of-life for each regimen. We evaluated the effect of changing our questionnaire distribution procedure in a multicenter phase II/III trial on the response rate to a quality-of-life questionnaire. METHODS: In the trial, we distributed 1767 questionnaires and 1045 were returned. We adopted a regression discontinuing design and estimated the change in response rate between pre-intervention (quality-of-life questionnaires were sent to each center soon after patient registration) and post-intervention (a set of tailored questionnaires was sent just before the first quality-of-life assessment). RESULTS: The post-intervention response rate was higher (odds ratio = 1.62) than the pre-intervention response rate. CONCLUSIONS: A simple logistic intervention reduced the non-completion of QOL assessment in this case, suggesting that a simple change can contribute to improving clinical trial accomplishment.

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.

Associations among behavioral and psychological symptoms of dementia, care burden, and family-to-work conflict of employed family caregivers.

AIM: The present study aimed to examine the associations among behavioral and psychological symptoms of dementia (BPSD) of persons with dementia (PWD), care burden and family-to-work conflict (FWC) of employed family caregivers. METHOD: A cross-sectional study was carried out with employed adult daughter or son (or in-law) caregivers for PWD from two rural cities in Japan. FWC, care burden and the degree of BPSD were evaluated by the Survey Work-Home Interaction-NijmeGen, Zarit Burden Scale-Short Version and Dementia Behavior Disturbance Scale, respectively. Of the 200 questionnaires distributed, 130 were returned. A total of 53 respondents were not employed, and seven questionnaires had missing data for demographic variables, Survey Work-Home Interaction-NijmeGen, Zarit Burden Scale-Short Version or Dementia Behavior Disturbance Scale. Thus, complete data from 70 respondents were analyzed through structural equation modeling. RESULTS: The mean age of employed family caregivers was 56 years, and 34 (48.5%) were men. The mean age of PWD was 84 years, and there were 68 (68.6%) men. The path model with a good fit was shown (root mean square error of approximation 0.136, comparative fit index 0.960 and goodness of fit index 0.965). The path model showed that BPSD affected FWC, and that the association was partially mediated by care burden. CONCLUSIONS: The results show that a decrease in not only care burden, but also BPSD, of PWD is important for employed family caregivers to reduce their FWC and maintain their work-life balance. Geriatr Gerontol Int 2019; 19: 51-55.

Are cancer survivors well-performing workers? A systematic review.

Cancer, its therapy, and related adverse effects have been associated with reduced work performance, including absenteeism (i.e. absence from scheduled work due to health problems) and presenteeism (i.e. impaired on-the-job performance due to health problems) among cancer survivors. This review aimed to compare the work performance of employed cancer survivors with that of cancer-free controls, and to examine factors related to the impairment of work performance. The findings from this review could bring about suggestions for clinical interventions aimed at improving survivors' work performance. Literature searches on cancer survivors' work performance were conducted in three electronic databases (MEDLINE, CINAHL and PsycINFO). Twenty-six studies were identified. Most studies comprised survivors of breast, prostate, testicular and gastrointestinal cancer. Although survivors diagnosed within 5 years reported more absenteeism than did controls in the studies, there was no difference between controls and survivors diagnosed >5 years earlier. Survivors diagnosed within 5 years also reported more presenteeism than did controls. Many studies reported that the complications related to cancer and its therapy (e.g. fatigue and depression) were associated with presenteeism. A multifaceted intervention for the various factors identified in this review would contribute towards improved work performance among employed cancer survivors.

Support for school reentry and relationships between children with cancer, peers, and teachers.

BACKGROUND: Returning to school after a cancer diagnosis can be socially challenging for children with cancer. This study investigated the form of support for school reentry and the associations with social support from peers and teachers. METHODS: This was a multicenter cross-sectional study. Children with cancer and their guardians completed questionnaires. Their guardians also underwent a semi-structured interview to describe the background of support for school reentry. RESULTS: Thirty-nine children with cancer and guardian dyads completed questionnaires and three guardians underwent semi-structured interview. Peer visits and their understanding of hospital experiences and how to interact with children were related to social support from peers. Teachers' understanding of physical appearance, academic performance, hospital experience and of how to interact with children was related to social support from peers. Teachers' understanding of diagnosis/treatment, academic performance and their status as the liaison between doctors/nurses in hospitals and teachers in local schools were also related to social support from teachers. Furthermore, children with cancer were also encouraged to establish supportive relationships with peers and teachers as a result of school reentry support that (i) helped children to feel that they are still members of the local school; (ii) improved peer and teacher understanding of the long-term recovery process of children with cancer; and (iii) facilitated the children's own awareness that they are fighting the disease. CONCLUSIONS: The multidisciplinary team consisting of the children with cancer, their families, doctors, nurses and teachers in the local school need to communicate with peers regarding positive experiences of fighting, and overcoming, severe disease.

Health-related quality of life in young adults in education, employment, or training: development of the Japanese version of Pediatric Quality of Life Inventory (PedsQL) Generic Core Scales Young Adult Version.

PURPOSE: The purpose of the study is to develop a Japanese version of the Pediatric Quality of Life Inventory (PedsQL) Generic Core Scales Young Adult Version (PedsQL-YA-J) and determine the feasibility, reliability, and validity of the scales. METHODS: Translation equivalence and content validity were verified using back-translation and cognitive debriefing tests. A total of 428 young adults recruited from one university, two vocational schools, or five companies completed questionnaires. We determined questionnaire feasibility, internal consistency, and test-retest reliability; checked concurrent validity against the Center for Epidemiologic Studies Depression Scale (CES-D); determined convergent and discriminant validity with the Medical Outcome Study 36-item Short Form Health Survey (SF-36); described known-groups validity with regard to subjective symptoms, illness or injury requiring regular medical visits, and depression; and verified factorial validity. RESULTS: All scales were internally consistent (Cronbach's coefficient alpha = 0.77-0.86); test-retest reliability was acceptable (intraclass correlation coefficient = 0.57-0.69); and all scales were concurrently valid with depression (Pearson's correlation coefficient = 0.43-0.57). The scales convergent and discriminant validity with the SF-36 and CES-D were acceptable. Evaluation of known-groups validity confirmed that the Physical Functioning scale was sensitive for subjective symptoms, the Emotional Functioning scale for depression, and the Work/School Functioning scale for illness or injury requiring regular medical visits. Exploratory factor analysis found a six-factor structure consistent with the assumed structure (cumulative proportion = 57.0%). CONCLUSIONS: The PedsQL-YA-J is suitable for assessing health-related quality of life in young adults in education, employment, or training, and for clinical trials and epidemiological research.