32 research outputs found
Health-Related Quality of Life of Young Adults Treated with Recombinant Human Growth Hormone during Childhood.
No full textBACKGROUND
Since recombinant human growth hormone (rhGH) became available in 1985, the spectrum of indications has broadened and the number of treated patients increased. However, long-term health-related quality of life (HRQoL) after childhood rhGH treatment has rarely been documented. We assessed HRQoL and its determinants in young adults treated with rhGH during childhood.
METHODOLOGY/PRINCIPAL FINDINGS
For this study, we retrospectively identified former rhGH patients in 11 centers of paediatric endocrinology, including university hospitals and private practices. We sent a questionnaire to all patients treated with rhGH for any diagnosis, who were older than 18 years, and who resided in Switzerland at time of the survey. Three hundred participants (58% of 514 eligible) returned the questionnaire. Mean age was 23 years; 56% were women; 43% had isolated growth hormone deficiency, or idiopathic short stature; 43% had associated diseases or syndromes, and 14% had growth hormone deficiency after childhood cancer. Swiss siblings of childhood cancer survivors and the German norm population served as comparison groups. HRQoL was assessed using the Short Form-36. We found that the Physical Component Summary of healthy patients with isolated growth hormone deficiency or idiopathic short stature resembled that of the control group (53.8 vs. 54.9). Patients with associated diseases or syndromes scored slightly lower (52.5), and former cancer patients scored lowest (42.6). The Mental Component Summary was similar for all groups. Lower Physical Component Summary was associated with lower educational level (coeff. -1.9). Final height was not associated with HRQoL.
CONCLUSIONS/SIGNIFICANCE
In conclusion, HRQoL after treatment with rhGH in childhood depended mainly on the underlying indication for rhGH treatment. Patients with isolated growth hormone deficiency/idiopathic short stature or patients with associated diseases or syndromes had HRQoL comparable to peers. Patients with growth hormone deficiency after childhood cancer were at high risk for lower HRQoL. This reflects the general impaired health of this vulnerable group, which needs long-term follow-up
Validation of questionnaire-reported hearing with medical records: A report from the Swiss Childhood Cancer Survivor Study.
No full textBACKGROUND
Hearing loss is a potential late effect after childhood cancer. Questionnaires are often used to assess hearing in large cohorts of childhood cancer survivors and it is important to know if they can provide valid measures of hearing loss. We therefore assessed agreement and validity of questionnaire-reported hearing in childhood cancer survivors using medical records as reference.
PROCEDURE
In this validation study, we studied 361 survivors of childhood cancer from the Swiss Childhood Cancer Survivor Study (SCCSS) who had been diagnosed after 1989 and had been exposed to ototoxic cancer treatment. Questionnaire-reported hearing was compared to the information in medical records. Hearing loss was defined as ≥ grade 1 according to the SIOP Boston Ototoxicity Scale. We assessed agreement and validity of questionnaire-reported hearing overall and stratified by questionnaire respondents (survivor or parent), sociodemographic characteristics, time between follow-up and questionnaire and severity of hearing loss.
RESULTS
Questionnaire reports agreed with medical records in 85% of respondents (kappa 0.62), normal hearing was correctly assessed in 92% of those with normal hearing (n = 249), and hearing loss was correctly assessed in 69% of those with hearing loss (n = 112). Sensitivity of the questionnaires was 92%, 74%, and 39% for assessment of severe, moderate and mild bilateral hearing loss; and 50%, 33% and 10% for severe, moderate and mild unilateral hearing loss, respectively. Results did not differ by sociodemographic characteristics of the respondents, and survivor- and parent-reports were equally valid.
CONCLUSIONS
Questionnaires are a useful tool to assess hearing in large cohorts of childhood cancer survivors, but underestimate mild and unilateral hearing loss. Further research should investigate whether the addition of questions with higher sensitivity for mild degrees of hearing loss could improve the results
The contribution of data mining to information science
No full textThe information explosion is a serious challenge for current information institutions. On the other hand, data mining, which is the search for valuable information in large volumes of data, is one of the solutions to face this challenge. In the past several years, data mining has made a significant contribution to the field of information science. This paper examines the impact of data mining by reviewing existing applications, including personalized environments, electronic commerce, and search engines. For these three types of application, how data mining can enhance their functions is discussed. The reader of this paper is expected to get an overview of the state of the art research associated with these applications. Furthermore, we identify the limitations of current work and raise several directions for future research
Auditory complications among childhood cancer survivors and health-related quality of life: a PanCareLIFE study.
No full textPURPOSE
Auditory complications are potential side effects from childhood cancer treatment. Yet, limited evidence exists about the impact of auditory complications-particularly tinnitus-on health-related quality of life (HRQoL) among childhood cancer survivors (CCS). We determined the prevalence of hearing loss and tinnitus in the European PanCareLIFE cohort of CCS and examined its effect on HRQoL.
METHODS
We included CCS from four European countries who were diagnosed at age ≤ 18 years; survived ≥ 5 years; and aged 25-44 years at study. We assessed HRQoL (Short Form 36), hearing loss, and tinnitus using questionnaires. We used multivariable linear regression to examine associations between these two auditory complications and HRQoL adjusting for socio-demographic and clinical factors.
RESULTS
Our study population consisted of 6,318 CCS (53% female; median age at cancer diagnosis 9 years interquartile range [IQR] 5-13 years) with median age at survey of 31 years (IQR 28-35 years). Prevalence was 7.5% (476/6,318; confidence interval [CI]: 6.9-8.2) for hearing loss and 7.6% (127/1,668; CI: 6.4-9.0) for tinnitus. CCS with hearing loss had impaired physical (coefficient [coef.] -4.3, CI: -7.0 to -1.6) and mental (coef. -3.2, CI: -5.5 to -0.8) HRQoL when compared with CCS with normal hearing. Tinnitus was associated with impaired physical (coef. -8.2, CI: -11.8 to -4.7) and mental (coef. -5.9, CI: -8.8 to -3.1) HRQoL.
CONCLUSION
We observed reduced HRQoL among CCS with hearing loss and tinnitus. Our findings indicate timely treatment of hearing loss and tinnitus may contribute to quality of life of survivors.
IMPLICATIONS FOR CANCER SURVIVORS
CCS who experience auditory complications should be counseled about possible therapeutic and supportive measures during follow-up care
Audiological monitoring in Swiss childhood cancer patients.
No full textBACKGROUND
Full audiological monitoring is the best strategy to detect hearing loss early and to provide timely intervention in the absence of a clinical method of otoprotection. Full monitoring requires audiological evaluation before, and then during and after ototoxic cancer treatment. In a worldwide context of monitoring protocols that vary substantially, we analyzed the audiological monitoring of childhood cancer patients over the last decade across treatment centers in Switzerland.
PROCEDURE
We retrospectively searched for audiological evaluations in all nine Swiss Pediatric Oncology Centers. We analyzed proportions of patients who had audiological monitoring and described type and timing of monitoring. We determined predictors of audiological monitoring using multivariable logistic regression and described time trends.
RESULTS
We included 185 patients from the Swiss Childhood Cancer Registry diagnosed from 2005 to 2013 who had platinum chemotherapy and/or cranial radiation ≥30 Gray and who were alive at time of study. Less than half of children, 43%, had full audiological monitoring (before, during, and after treatment), while 72% were tested after cancer treatment. Nonstudy patients were less likely to have had monitoring in all phases of cancer treatment. Patients who received treatment with cisplatin or both platinum chemotherapy and cranial radiation were more likely to have had monitoring after treatment. Monitoring during and after treatment increased over the study period, but monitoring before treatment was insufficient in all time periods.
CONCLUSIONS
Our population-based study indicates that audiological monitoring is insufficient in Switzerland, particularly for nonstudy patients. Clinicians must become more aware of the importance of full audiological monitoring
Swiss Childhood Cancer Registry - Annual Report 2013-2014
No full textNo abstract available.+ ID der Publikation: unilu_6416 + Sprache: Englisch + Letzte Aktualisierung: 2019-02-19 17:20:0
Participants and response rate of the questionnaire survey.
No full text<p>Fig 1 shows the flow diagram of our study population starting from those who were contacted, and tapering to those included in the analysis. Patients were included if they received rhGH during childhood, were alive, ≥18 years old at time of survey, and resident in Switzerland. We excluded those with unclear diagnoses or chronic renal failure. Nine patients could not be contacted due to an unknown address. Abbreviations: rhGH, recombinant human growth hormone; SCCSS, Swiss Childhood Cancer Survivor Study.</p
Characteristics of the study population: comparison of non-participants, participants and Swiss controls.
No full text<p>NOTE: Percentages are based upon available data for each variable.</p><p>Abbreviations: GHD, growth hormone deficiency; IGHD, isolated growth hormone deficiency; ISS, idiopathic short stature; MPHD, multiple pituitary hormone deficiency; n, number; n.a., not applicable/ not available; rhGH, recombinant human growth hormone; SD, standard deviation; SDS, standard deviation score; SGA, small for gestational age</p><p><sup>a</sup>Non-participants include 37 who were not included into mailing, 129 who did not respond and 85 who refused to participate.</p><p><sup>b</sup>Age and sex standardized numbers and percentages are given for Swiss controls.</p><p><sup>c</sup>Column percentages are given.</p><p><sup>d</sup>p-value calculated from chi-square statistics comparing rhGH patients participants vs. non participants.</p><p><sup>e</sup>p-value calculated from chi-square statistics comparing rhGH patients participants vs. Swiss controls.</p><p><sup>f</sup>Information not available for non-responders.</p><p><sup>g</sup>Information on rhGH treatment is not applicable for Swiss controls.</p><p><sup>h</sup>Other indications include calciopenic rickets, osteogenesis imperfecta, central diabetes insipidus, clinically defined syndromes (except Turner syndrome), skeletal dysplasia, insufficient nutrient intake, disorders in organ systems, psychosocial growth failure, congenital adrenal hyperplasia.</p><p><sup>i</sup>Group I includes healthy patients with IGHD or ISS; Group II patients with associated diseases or syndromes; Group III childhood cancer survivors with GHD.</p><p><sup>k</sup>p- value calculated on two-sample mean-comparison test (t-test).</p><p>Characteristics of the study population: comparison of non-participants, participants and Swiss controls.</p
