Health Status and Quality of Life in Adult Biliary Atresia Patients Surviving with Their Native Livers

Robert C. Lind; Willemien de Vries; Claudia M. G. Keyzer-Dekker; Paul M. J. G. Peeters; Henkjan J. Verkade; Josette E. H. M. Hoekstra-Weebers; Alida F. W. van der Steeg; Jan B. F. Hulscher

doi:10.1055/s-0034-1387941

European Journal of Pediatric Surgery, Inhaltsverzeichnis

Eur J Pediatr Surg 2015; 25(01): 60-65
DOI: 10.1055/s-0034-1387941

Original Article

Georg Thieme Verlag KG Stuttgart · New York

Health Status and Quality of Life in Adult Biliary Atresia Patients Surviving with Their Native Livers

Robert C. Lind

¹Department of Pediatric Surgery, University Medical Center Groningen, Groningen, The Netherlands

^*The authors share first authorship.

,

Willemien de Vries

²Division of Pediatrics, Section of Gastroenterology/Hepatology, University Medical Center Groningen, Groningen, The Netherlands

^*The authors share first authorship.

,

Claudia M. G. Keyzer-Dekker

¹Department of Pediatric Surgery, University Medical Center Groningen, Groningen, The Netherlands

,

Paul M. J. G. Peeters

³Department of Hepatobiliary Surgery and Liver Transplantation, University Medical Center Groningen, Groningen, The Netherlands

,

Henkjan J. Verkade

²Division of Pediatrics, Section of Gastroenterology/Hepatology, University Medical Center Groningen, Groningen, The Netherlands

,

Josette E. H. M. Hoekstra-Weebers

⁴Wenckebach Institute Groningen, University Medical Center Groningen, Groningen, The Netherlands

,

Alida F. W. van der Steeg

⁵Department of Pediatric Surgery, Pediatric Surgical Center of Amsterdam, Emma Children's Hospital AMC and VU University Medical Center, Amsterdam, The Netherlands

⁶Department of Medical Psychology, Center of Research on Psychology in Somatic Diseases (CoRPS), Tilburg University, Tilburg, The Netherlands

,

Jan B. F. Hulscher

¹Department of Pediatric Surgery, University Medical Center Groningen, Groningen, The Netherlands

› Institutsangaben

Abstract

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.

Keywords

biliary atresia - quality of life - health status - adult - native liver

Volltext

Referenzen

References
1 Bates MD, Bucuvalas JC, Alonso MH, Ryckman FC. Biliary atresia: pathogenesis and treatment. Semin Liver Dis 1998; 18 (3) 281-293
2 Lilly JR, Altman RP. Hepatic portoenterostomy (the Kasai operation) for biliary atresia. Surgery 1975; 78 (1) 76-86
3 Karrer FM, Price MR, Bensard DD , et al. Long-term results with the Kasai operation for biliary atresia. Arch Surg 1996; 131 (5) 493-496
4 Davenport M, Ong E, Sharif K , et al. Biliary atresia in England and Wales: results of centralization and new benchmark. J Pediatr Surg 2011; 46 (9) 1689-1694
5 Khalil BA, Perera MT, Mirza DF. Clinical practice: management of biliary atresia. Eur J Pediatr 2010; 169 (4) 395-402
6 Jimenez-Rivera C, Jolin-Dahel KS, Fortinsky KJ, Gozdyra P, Benchimol EI. International incidence and outcomes of biliary atresia. J Pediatr Gastroenterol Nutr 2013; 56 (4) 344-354
7 de Vries W, Homan-Van der Veen J, Hulscher JB, Hoekstra-Weebers JE, Houwen RH, Verkade HJ ; Netherlands Study Group of Biliary Atresia Registry. Twenty-year transplant-free survival rate among patients with biliary atresia. Clin Gastroenterol Hepatol 2011; 9 (12) 1086-1091
8 Chardot C, Buet C, Serinet MO , et al. Improving outcomes of biliary atresia: French national series 1986-2009. J Hepatol 2013; 58 (6) 1209-1217
9 Fredericks EM, Dore-Stites D, Calderon SY , et al. Relationship between sleep problems and health-related quality of life among pediatric liver transplant recipients. Liver Transpl 2012; 18 (6) 707-715
10 Alonso EM, Neighbors K, Barton FB , et al; Studies of Pediatric Liver Transplant Research Group. Health-related quality of life and family function following pediatric liver transplantation. Liver Transpl 2008; 14 (4) 460-468
11 Bucuvalas JC, Britto M, Krug S , et al. Health-related quality of life in pediatric liver transplant recipients: A single-center study. Liver Transpl 2003; 9 (1) 62-71
12 Midgley DE, Bradlee TA, Donohoe C, Kent KP, Alonso EM. Health-related quality of life in long-term survivors of pediatric liver transplantation. Liver Transpl 2000; 6 (3) 333-339
13 Mohammad S, Hormaza L, Neighbors K , et al. Health status in young adults two decades after pediatric liver transplantation. Am J Transplant 2012; 12 (6) 1486-1495
14 Howard ER, MacLean G, Nio M, Donaldson N, Singer J, Ohi R. Survival patterns in biliary atresia and comparison of quality of life of long-term survivors in Japan and England. J Pediatr Surg 2001; 36 (6) 892-897
15 Bergner M. Quality of life, health status, and clinical research. Med Care 1989; 27 (3, Suppl): S148-S156
16 WHOQOL Group. The World Health Organization Quality of Life assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med 1995; 41 (10) 1403-1409
17 van der Steeg AF, De Vries J, Roukema JA. The value of quality of life and health status measurements in the evaluation of the well-being of breast cancer survivors. Eur J Surg Oncol 2008; 34 (11) 1225-1230
18 Smith KW, Avis NE, Assmann SF. Distinguishing between quality of life and health status in quality of life research: a meta-analysis. Qual Life Res 1999; 8 (5) 447-459
19 Breek JC, de Vries J, van Heck GL, van Berge Henegouwen DP, Hamming JF. Assessment of disease impact in patients with intermittent claudication: discrepancy between health status and quality of life. J Vasc Surg 2005; 41 (3) 443-450
20 O'carroll RE, Cossar JA, Couston MC, Hayes PC. Sensitivity to Change Following Liver Transplantation: A Comparison of Three Instruments that Measure Quality of Life. J Health Psychol 2000; 5 (1) 69-74
21 VanderZee KI, Sanderman R, Heyink JW, de Haes H. Psychometric qualities of the RAND 36-Item Health Survey 1.0: a multidimensional measure of general health status. Int J Behav Med 1996; 3 (2) 104-122
22 WHOQOL Group. The development of the World Health Organization quality of life assessment instrument (the WHOQOL). In: Orley J, Kuyken W, eds. Quality of Life Assessment: International Perspectives. Berlin: Springer-Verlag; 1994
23 de Vries J, van Heck GL. The World Health Organization quality of life assessment instrument (WHOQOL-100): Validation study with the Dutch version. Eur J Psychol Assess 1997; 13 (3) 164-178
24 Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand 1983; 67 (6) 361-370
25 Snaith RP. The Hospital Anxiety And Depression Scale. Health Qual Life Outcomes 2003; 1: 29
26 Bjelland I, Dahl AA, Haug TT, Neckelmann D. The validity of the Hospital Anxiety and Depression Scale. An updated literature review. J Psychosom Res 2002; 52 (2) 69-77
27 Horowitz M, Wilner N, Alvarez W. Impact of Event Scale: a measure of subjective stress. Psychosom Med 1979; 41 (3) 209-218
28 Cohen J. Statistical Power Analysis for Behavioral Sciences. 2nd ed. Hillsdale, NJ: Erlbaum; 1988
29 Spinhoven P, Ormel J, Sloekers PPA, Kempen GI, Speckens AE, Van Hemert AM. A validation study of the Hospital Anxiety and Depression Scale (HADS) in different groups of Dutch subjects. Psychol Med 1997; 27 (2) 363-370
30 Olssøn I, Mykletun A, Dahl AA. The Hospital Anxiety and Depression Rating Scale: a cross-sectional study of psychometrics and case finding abilities in general practice. BMC Psychiatry 2005; 5: 46
31 Sundaram SS, Alonso EM, Haber B , et al; Childhood Liver Disease Research and Education Network (ChiLDREN). Health related quality of life in patients with biliary atresia surviving with their native liver. J Pediatr 2013; 163 (4) 1052-1057 , e2