Luzius Mader

Mortality and Longevity after a Spinal Cord Injury: Systematic Review and Meta-Analysis

Background/Aims: Mortality and longevity studies of spinal cord injury (SCI) are essential for informing healthcare systems and policies. This review evaluates the current evidence among people with SCIs worldwide in relation to the WHO region and country income level; demographic and lesion characteristics; and in comparison with the general population. Methods: A systematic review of relevant databases for original studies. Pooled estimates were derived using random effects meta-analysis, restricted to traumatic SCI. Results: Seventy-four studies were included. In-hospital mortality varied, with pooled estimates of 24.1% (95% confidence interval (CI) 14.1-38.0), 7.6% (95% CI 6.3-9.0), 7.0% (95% CI 1.5-27.4), and 2.1% (95% CI 0.9-5.0) in the WHO regions of Africa, the Americas, Europe and Western Pacific. The combined estimate for low- and middle-income countries was nearly three times higher than for high-income countries. Pooled estimates of first-year survival were 86.5% (95% CI 75.3-93.1), 95.6% (95% CI 81.0-99.1), and 94.0% (95% CI 93.3-94.6) in the Americas, Europe and Western Pacific. Pooled estimates of standardized mortality ratios in tetraplegics were 2.53 (2.00-3.21) and 2.07 (1.47-2.92) in paraplegics. Conclusion: This study found substantial variation in mortality and longevity within the SCI population, compared to the general population, and between WHO regions and country income level. Improved standardization and quality of reporting is needed to improve inferences regarding the extent to which mortality outcomes following an SCI are related to healthcare systems, services and policies.

Employment Situation of Parents of Long-Term Childhood Cancer Survivors

Background Taking care of children diagnosed with cancer affects parents’ professional life. The impact in the long-term however, is not clear. We aimed to compare the employment situation of parents of long-term childhood cancer survivors with control parents of the general population, and to identify clinical and socio-demographic factors associated with parental employment. Methods As part of the Swiss Childhood Cancer Survivor Study, we sent a questionnaire to parents of survivors aged 5–15 years, who survived ≥5 years after diagnosis. Information on control parents of the general population came from the Swiss Health Survey (restricted to men and women with ≥1 child aged 5–15 years). Employment was categorized as not employed, part-time, and full-time employed. We used generalized ordered logistic regression to determine associations with clinical and socio-demographic factors. Clinical data was available from the Swiss Childhood Cancer Registry. Results We included 394 parent-couples of survivors and 3’341 control parents (1’731 mothers; 1’610 fathers). Mothers of survivors were more often not employed (29% versus 22%; ptrend = 0.007). However, no differences between mothers were found in multivariable analysis. Fathers of survivors were more often employed full-time (93% versus 87%; ptrend = 0.002), which remained significant in multivariable analysis. Among parents of survivors, mothers with tertiary education (OR = 2.40, CI:1.14–5.07) were more likely to be employed. Having a migration background (OR = 3.63, CI: 1.71–7.71) increased the likelihood of being full-time employed in mothers of survivors. Less likely to be employed were mothers of survivors diagnosed with lymphoma (OR = 0.31, CI:0.13–0.73) and >2 children (OR = 0.48, CI:0.30–0.75); and fathers of survivors who had had a relapse (OR = 0.13, CI:0.04–0.36). Conclusion Employment situation of parents of long-term survivors reflected the more traditional parenting roles. Specific support for parents with low education, additional children, and whose child had a more severe cancer disease could improve their long-term employment situation.

Metric properties of the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation) in persons with spinal cord injury living in Switzerland

OBJECTIVE To examine the metric properties of the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation) in persons with spinal cord injury in Switzerland from a classical and item response theory perspective. DESIGN Cross-sectional survey. SUBJECTS Persons with spinal cord injury living in the Swiss community (n = 1,549). METHODS Score distributions and internal consistency were evaluated using Classical Test Theory. The Restrictions and Satisfaction scales were subjected to Rasch analysis. Anchored analyses were performed to account appropriately for items with structural missing. RESULTS Internal consistency was good for the Restrictions (α = 0.90) and Satisfaction scales (α = 0.90), but not for the Frequency scale (α = 0.65). Rasch analyses showed acceptable model fit for the Restrictions and Satisfaction scales after collapsing response categories of some items and merging some items into testlets. Differential item functioning was small. Anchoring allowed inclusion of the item work/education in the Restrictions scale and work/education and/or partner relationship in the Satisfaction scale. CONCLUSION The Restrictions and Satisfaction scales of the USER-Participation showed satisfactory metric properties. The Frequency scale showed fewer optimal properties, but nonetheless provides important additional information regarding participation. Conversion tables were performed to transform USER-Participation raw scores into a 0-100 interval scale using Rasch-based ability estimates for use in epidemiological studies.

Household income and risk-of-poverty of parents of long-term childhood cancer survivors

Taking care of children diagnosed with cancer affects parents’ professional life and may place the family at risk‐of‐poverty. We aimed to (i) compare the household income and risk‐of‐poverty of parents of childhood cancer survivors (CCS) to parents of the general population, and (ii) identify sociodemographic and cancer‐related factors associated with risk‐of‐poverty.

Using the refined ICF Linking Rules to compare the content of existing instruments and assessments: a systematic review and exemplary analysis of instruments measuring participation.

Abstract Background: Existing instruments measuring participation may vary with respect to various aspects. This study aimed to examine the comparability of existing instruments measuring participation based on the International Classification of Functioning, Disability and Health (ICF) by considering aspects of content, the perspective adopted and the categorization of response options. Methods: A systematic literature review was conducted to identify instruments that have been commonly used to measure participation. Concepts of identified instruments were then linked to the ICF following the refined ICF Linking Rules. Aspects of content, perspective adopted and categorization of response options were documented. Results: Out of 315 instruments identified in the full-text screening, 41 instruments were included. Concepts of six instruments were linked entirely to the ICF component Activities and Participation; of 10 instruments still 80% of their concepts. A descriptive perspective was adopted in most items across instruments (75%), mostly in combination with an intensity rating. An appraisal perspective was found in 18% and questions from a need or dependency perspective were least frequent (7%). Conclusion: Accounting for aspects of content, perspective and categorization of responses in the linking of instruments to the ICF provides detailed information for the comparison of instruments and guidance on narrowing down the choices of suitable instruments from a content point of view. Implications for Rehabilitation For clinicians and researchers who need to identify a specific instrument for a given purpose, the findings of this review can serve as a screening tool for instruments measuring participation in terms of the following: • Their content covered based on the ICF. • The perspective adopted in the instrument (e.g., descriptive, need/dependency or appraisal). • The categorization of their response options (e.g., intensity or frequency).

Household income and risk-of-poverty of parents of long-term childhood cancer survivors: Mader et al.

Taking care of children diagnosed with cancer affects parents’ professional life and may place the family at risk‐of‐poverty. We aimed to (i) compare the household income and risk‐of‐poverty of parents of childhood cancer survivors (CCS) to parents of the general population, and (ii) identify sociodemographic and cancer‐related factors associated with risk‐of‐poverty.

Education, employment and marriage in long-term survivors of teenage and young adult cancer compared with healthy controls.

QUESTIONS UNDER STUDY Teenage and young adult (TYA) cancer patients are faced with the diagnosis during a challenging period of psychosocial development that may affect social outcomes in the long term. Therefore, we aimed to: (1) determine differences in social outcomes between long-term TYA cancer survivors and healthy controls and (2) identify factors associated with adverse social outcomes. METHODS We sent a questionnaire to TYA cancer survivors (aged 16-25 years at diagnosis, 5 years after diagnosis) registered in the Cancer Registry Zurich and Zug. Information on controls was obtained from the Swiss Health Survey 2012. We assessed educational achievement, employment status, marital status and life partnership (survivors only), and compared these outcomes between survivors and controls. We used logistic regression to identify sociodemographic and cancer-related factors associated with social outcomes. RESULTS We included 160 TYA cancer survivors and 999 controls. Educational achievement of survivors differed significantly from controls (p = 0.012): more survivors than controls reported upper secondary education (33 vs 27%) and fewer survivors reported university education (12 vs 21%). No significant differences were found for employment (p = 0.515) and marital status (p = 0.357). The majority of survivors (91%) and controls (90%) were employed, and 37% of survivors were married, compared with 41% of controls. There were no cancer-related factors associated with having only basic education. Unemployment was associated with younger age at diagnosis (odds ratio [OR] 5.3, 95% confidence interval [CI] 1.3-30.8) and self-reported late effects (OR 4.7, 95% CI 1.3-19.5). Survivors of younger age at diagnosis were more likely not to be married (OR 2.7, 95% CI 1.3-5.7) and not to have a life partner (OR 2.3, 95% CI 1.0-5.2). CONCLUSIONS Our findings indicate that TYA cancer survivors completed applied higher education rather than a university education. Future studies including larger samples of TYA cancer survivors are needed to validate our findings and to explore the reasons for and satisfaction with the observed educational pathway.

Attendance to Follow-Up Care in Survivors of Adolescent and Young Adult Cancer: Application of the Theory of Planned Behavior.

PURPOSE The aim was to study follow-up care attendance in adolescent and young adult (AYA) cancer survivors to investigate: (1) correlates of the intention to attend follow-up care and (2) whether the intention is associated with the actual attendance, applying the theory of planned behavior (TPB). METHODS We conducted a questionnaire survey in AYA cancer survivors diagnosed 1990-2005 at age 16-25 years, registered in the Cancer Registry Zurich and Zug, Switzerland, who had survived at least 5 years. Structural equation modeling was applied to investigate TPB-related correlates (attitudes, subjective norms, and perceived behavioral control) of intention to attend follow-up care. Logistic regression analysis was used to study the association between intention and actual attendance. RESULTS We included 160 AYA cancer survivors in the study (mean age at study: 34.0 years, mean age at diagnosis: 21.6 years, 98 [61.3%] male). Positive attitudes toward follow-up care (coefficient = 0.32, 95% confidence interval [CI]: 0.05 to 0.60) and supportive subjective norms (coefficient = 0.59, 95% CI: 0.41 to 0.78) were associated with higher intention to attend follow-up care. Perceived behavioral control was not associated with intention to attend (coefficient = -0.13, 95% CI: -0.36 to 0.10), but with actual attendance (odds ratio [OR] = 4.55, 95% CI: 1.83 to 11.31). Higher intention was associated with actual follow-up care attendance (OR = 14.29, 95% CI: 5.80 to 35.21). CONCLUSION Positive attitudes and supportive social norms were associated with higher intention to attend follow-up care, and higher intention was associated with actual follow-up care attendance. Increasing awareness of the importance and benefits of follow-up care not only among survivors but also family, friends and healthcare professionals may help increase follow-up care attendance among AYA cancer survivors.

Unemployment Following Childhood Cancer

BACKGROUND Childhood cancer survivors are at risk of physical and mental long-term sequelae that may interfere with their employment situation in adulthood. We updated a systematic review from 2006 and assessed unemployment in adult childhood cancer survivors compared to the general population, and its predictors. METHODS Systematic literature searches for articles published between February 2006 and August 2016 were performed in CINAHL, EMBASE, PubMed, PsycINFO, and SocINDEX. We extracted unemployment rates in studies with and without population controls (controlled /uncontrolled studies). Unemployment in controlled studies was evaluated using a meta-analytic approach. RESULTS We included 56 studies, of which 27 were controlled studies. Approximately one in six survivors was unemployed. The overall meta-analysis of controlled studies showed that survivors were more likely to be unemployed than controls (Odds Ratio [OR] = 1.48, 95% confidence interval [CI]: [1.14; 1.93]). Elevated odds were found in survivors in the US and Canada (OR = 1.86, 95% CI: [1.26; 2.75]), as well as in Europe (OR = 1.39, 95% CI: [0.97; 1.97]). Survivors of brain tumors in particular were more likely to be unemployed (OR = 4.62, 95% CI: [2.56; 8.31]). Narrative synthesis across all included studies revealed younger age at study and diagnosis, female sex, radiotherapy, and physical late effects as further predictors of unemployment. CONCLUSION Childhood cancer survivors are at considerable risk of unemployment in adulthood. They may benefit from psycho-social care services along the cancer trajectory to support labor market integration.