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Background Biliary atresia (BA) is a rare cholestatic disease of infancy. Kasai portoenterostomy and liver transplantation (LT) are the two sequential treatment options. An increasing number of patients survive into adulthood. Little is known about their health-related quality of life (HRQOL). This study aims to compare HRQOL of transplanted and nontransplanted patients in a cohort of young adult BA survivors. Patients and Methods RAND-36 and Liver Disease Index Score (LDSI) questionnaires were sent to eligible adult patients with BA. Clinical characteristics were obtained from the NeSBAR (Netherlands Study group on Biliary Atresia Registry) and the national pediatric LT database. RAND-36 domain and summary scores were compared with those of an age-matched Dutch reference group. The correlations between several clinical variables and HRQOL were analyzed. Results Mean RAND-36 domain and summary scores of transplanted (n = 15) and nontransplanted (n = 25) patients with BA (response 74%) were similar to the reference scores, with the exception of a decreased general health perception in nontransplanted patients (63 ± 21 vs. 75 ± 17; [p < 0.001], particularly in females. RAND-36 domain and summary scores were not significantly correlated to age at LT, time since LT, serum bilirubin, aspartate amino transferase or albumin levels, but were moderately to strongly correlated to LDSI total scores (r values 0.35-0.77). Conclusions Overall, young adult patients with BA have a HRQOL similar to an age-matched reference group. However, general health perception of nontransplanted patients, particularly of females, was decreased. HRQOL is correlated to liver disease symptoms but not to liver biochemistry parameters. Nontransplanted females and patients suffering from liver disease-associated symptoms may be a target for tailored supportive interventions., (Georg Thieme Verlag KG Stuttgart · New York.)

Introduction: Gaining an insight into the quality of life (QOL) in long-term biliary atresia (BA) survivors is becoming more important. Identifying patients with limitations might make tailor made interventions possible. This is the first study investigating the health status (HS) and QOL in adults surviving BA with their native livers, and comparing them with healthy peers., Methods: BA patients surviving with their native liver were identified in the Netherlands Study Group on Biliary Atresia Registry database. The RAND-36 and the World Health Organization Quality of Life assessment instrument-100 (WHOQOL-100) were used to measure HS and QOL, respectively. Correlation between the RAND-36 and WHOQOL-100 was also assessed. Hospital Anxiety and Depression Scale (HADS) and the Impact Event Scale (IES) were also completed., Results: In total, 25 (83%) of the 30 eligible patients after Kasai portoenterostomy completed the questionnaires (median age 23.2 years). A lower perceived level of general health in HS was found as compared with the reference group and a higher score on the social domain was reported in QOL. Correlations between HS and QOL questionnaires were moderate to good. For the group, overall HADS and IES scores were good, though individual patients did score above the cutoff of both the questionnaires., Conclusion: Adult BA patients surviving with their native liver have similar HS and QOL as compared with their healthy peers. RAND-36 and WHOQOL-100 questionnaires are not interchangeable, but complementary to assess the patients' outcomes. The overall scores did not point to increased levels of anxiety and depression. However, on an individual level, three and six patients had a score above the cutoff of the HADS subscales demonstrating clinically relevant levels of anxiety and depression, respectively., (Georg Thieme Verlag KG Stuttgart · New York.)

Purpose: The objectives of this study were to examine the differences in health status (HS) of women with breast cancer (BC) at different moments in time, and between women scoring high and not high on trait anxiety, and to identify possible predictors of HS 6 and 12 months after surgery., Methods: Patients (N = 223) completed a trait anxiety questionnaire before diagnosis. Women who received a diagnosis of BC completed a BC-specific HS questionnaire 1, 3, 6 and 12 months after surgery. ANCOVA for repeated measures and multiple regression analysis were used in the analyses., Results: Women scoring high on trait anxiety had significant (P < .005) lower Body image, worse Future perspective and Sexual functioning, and more Side-effects than women who did not score high on trait anxiety. At 6 and 12 months after surgery, the same aspects of HS were predicted by higher trait anxiety scores., Conclusions: Higher scores on trait anxiety resulted in worse scores on four HS domains, indicating that there should be more attention for this group of patients, even before treatment starts.

Background: Quality of life (QoL) in breast cancer survivors has become increasingly important. However, QoL is often assessed using a questionnaire meant to assess health status (HS). In this study the differences in outcomes between a HS and QoL questionnaire are shown and the correlation between both questionnaires is assessed., Methods: From the 140 breast cancer survivors that participated in the study, 68 received breast conserving therapy (BCT) and 72 were treated with mastectomy (MTC). HS was measured using the RAND-36 and QoL was assessed with the WHOQOL-100. Scores were compared with healthy reference populations., Results: The scores on QoL in both treatment groups were comparable to those of healthy women. HS scores showed lower physical functioning and general health perceptions for the MTC women. Pearson correlations between both questionnaires ranged between 0.19 and 0.75. Thus, the results of both questionnaires were not interchangeable., Conclusion: A HS questionnaire reflects functional impairments and reveals different areas of concern compared with a QoL questionnaire. The latter reflects the (dis)satisfaction of a patient and this seems not to mirror the functional limitations. Assessment of both objective functioning and subjective appraisal of functioning will result in treatment suggestions that meet the patients needs.

Quality of life is of increasing importance in clinical oncology studies. When analysing publications concerning quality of life in breast cancer, however, the majority of the articles appear to study health status and not quality of life. Therefore five recommendations were formulated to apply reading a 'quality of life' article. With the use of these recommendations an article can be evaluated and the clinical significance can be assessed.