The health-related quality of life (HR-QOL) of children and adolescents is increasingly considered a relevant topic for research. Instruments to assess quality of life in children and adolescents of a generic as well as disease- or condition-specific nature are being developed and applied in epidemiological surveys, clinical studies, quality assurance and health economics. This paper attempts to give an overview on the state of the art of HR-QOL assessment in children as it relates to methodological and conceptual challenges. Instruments available in international or cross-cultural research to assess HR-QOL in generic terms were identified and described according to psychometric data provided and the width of application. In an initial literature search, several challenges in the assessment of child and adolescent HR-QOL were identified, ranging from conceptual and methodological to practical aspects. Seven specific major issues were considered: (i) What are the dimensions of HR-QOL relevant for children and adolescents, and do suitable instruments for their measurement exist? (ii) Can these dimensions be collected in a cross-culturally comparable way? (iii) What advantages and disadvantages do self-rated versus externally evaluated HR-QOL measurements of children and adolescents have? (iv) How can HR-QOL be assessed in an age-appropriate way? (v) What are the advantages and disadvantages of disease-specific and generic data collection? (vi) What advantages and disadvantages do profile and index instruments have? (vii) How can HR-QOL be connected with utility- preference values? In a second literature search we identified nine generic HR-QOL instruments and four utility health state classification systems that complied with the prespecified inclusion criteria. It was concluded that (i) HR-QOL instruments are available to assess the dimensions of the construct relevant to children and adolescents; (ii) provided that an instrument was constructed in an appropriate way, the dimensions of HR-QOL can be measured in an interculturally comparable manner; (iii) the HR-QOL of children and adolescents can and should be ascertained by self-rating; (iv) the measurement instruments used have to consider maturity and cognitive development; (v) only generic quality-of-life instruments allow for an assessment of HR-QOL in both healthy and chronically ill children and adolescents; (vi) the representation of HR-QOL achieved through a singular index value is connected to strict psychometric conditions: the index instrument has to be tailored to these psychometric conditions; (vii) how far utility measures are employable with children and adolescents has to be investigated in further studies. The problem aspects identified indicate the necessity for further research. Nevertheless, instruments for assessing the HR-QOL of children and adolescents can be identified that meet the requirements mentioned above.

BackgroundTelephone interviews have become established as an alternative to traditional mail surveys for collecting epidemiological data in public health research. However, the use of telephone and mail surveys raises the question of to what extent the results of different data collection methods deviate from one another. We therefore set out to study possible differences in using telephone and mail survey methods to measure health-related quality of life and emotional and behavioural problems in children and adolescents.MethodsA total of 1700 German children aged 8-18 years and their parents were interviewed randomly either by telephone or by mail. Health-related Quality of Life (HRQoL) and mental health problems (MHP) were assessed using the KINDL-R Quality of Life instrument and the Strengths and Difficulties Questionnaire (SDQ) children's self-report and parent proxy report versions. Mean Differences ("d" effect size) and differences in Cronbach alpha were examined across modes of administration. Pearson correlation between children's and parents' scores was calculated within a multi-trait-multi-method (MTMM) analysis and compared across survey modes using Fisher-Z transformation.ResultsTelephone and mail survey methods resulted in similar completion rates and similar socio-demographic and socio-economic makeups of the samples. Telephone methods resulted in more positive self- and parent proxy reports of children's HRQoL (SMD ≤ 0.27) and MHP (SMD ≤ 0.32) on many scales. For the phone administered KINDL, lower Cronbach alpha values (self/proxy Total: 0.79/0.84) were observed (mail survey self/proxy Total: 0.84/0.87). KINDL MTMM results were weaker for the phone surveys: mono-trait-multi-method mean r = 0.31 (mail: r = 0.45); multi-trait-mono-method mean (self/parents) r = 0.29/0.36 (mail: r = 0.34/0.40); multi-trait-multi-method mean r = 0.14 (mail: r = 0.21). Weaker MTMM results were also observed for the phone administered SDQ: mono-trait-multi-method mean r = 0.32 (mail: r = 0.40); multi-trait-mono-method mean (self/parents) r = 0.24/0.30 (mail: r = 0.20/0.32); multi-trait-multi-method mean r = 0.14 (mail = 0.14). The SDQ classification into borderline and abnormal for some scales was affected by the method (OR = 0.36-1.55).ConclusionsThe observed differences between phone and mail surveys are small but should be regarded as relevant in certain settings. Therefore, while both methods are valid, some changes are necessary. The weaker reliability and MTMM validity associated with phone methods necessitates improved phone adaptations of paper and pencil questionnaires. The effects of phone versus mail survey modes are partly different across constructs/measures.

Zusammenfassung: Die radiolunäre Arthrodese ist ein probates Operationsverfahren, Instabilität und Schmerzen am rheumatisch veränderten Handgelenk zu behandeln. Zwischen 1988 und 1993 haben wir dieses Operationsverfahren bei 27 Patienten (33 Handgelenke) mit gesicherter chronischer Polyarthritis durchgeführt. 26 Patienten haben ein Follow-up von wenigstens 2 jahren, der durchschnittliche Nachuntersuchungszeitraum beträgt 51 Monate. Die Nachuntersuchungsquote beträgt 97 %. In die Nachuntersuchung gehen ein: Carpaler Höhenindex, ulnarer Translationsindex, Schmerzintensität, Bewegungsumfang, Komplikationsrate und Änderung des Larsen-Stadiums. Die Operationsindikation wurde im Larsen-Stadium 2-3 (2,7 gemittelt) bei ulnarem Translationsindex von 0,31 und carpalern Höhenindex von 0,49 gestellt. Wir haben alle Patienten nach 24 Monaten und, soweit dies möglich war, nach 4 jahren erneut untersucht. Röntgenologisch sind 97% aller Arthrodesen knöchern fest konsolidiert, lediglich eine radiolunäre Arthrodese ist fibrös fest. Nur in einem Drittel der nachuntersuchten Handgelenke hat sich das präoperativ radiologisch festgelegte Larsen-Stadium zum Zeitpunkt der Nachuntersuchung nicht verändert, 2/ 3 der Handgelenke wiesen anläßlich der Nachuntersuchung ein schlechteres Larsen-Stadium auf. Das Larsen-Stadium verschlechterte sich lediglich bei einem Patienten nach zwei jahren, bei einem weiteren Patienten nach 3 jahren, bei allen anderen Patienten 4 jahre und später. Bei den Patienten, die wir 5 jahre und länger überblicken, sind lediglich 2 Patienten in ihrem Larsen-Stadium unverändert. Die Änderung der carpalen Höhe von 0,49 präoperativ auf 0,46 ist statistisch signifikant. Der ulnare Translationsindex liegt präoperativ bei 0,31 und bei der letzten Nachuntersuchung bei 0,36, bei der Nachuntersuchung 2 Jahre postoperativ bei 0,33. Der ulnare Translationsindex verschlechtert sich signifikant. Signifikante Änderungen für die Beweglichkeit zeigen sich für die Flexion, die Radialabduktion sowie die Pro-und Supination. Als Komplikationen haben wir zwei Plattenbrüche zu verzeichnen. Unsere durchschnittliche Nachbeobachtungszeit von 51 Monaten zeigt, daß bei klinischer Beschwerdefreiheit oder -armut radiologische Destruktionen voranschreiten, insbesondere in den Intercarpalgelenken. Die radiolunäre Arthrodese kann das Fortschreiten der grunderkrankungsbedingten Destruktionen nicht aufhalten, jedoch deutlich verlangsamen. Die für die Gesamtfunktion der Hand deletäre Ulnartranslation wird entscheidend positiv beeinflußt.Medium-Term Results of Radiolunate Arthrodesis in Rheumatoid Arthritis Via Mini-T-Plate: Radiolunate arthrodesis (RLA) is a weil known procedure to treat instability and pain of the rheumatoid wrist. We performed this procedure in 27 patients (33 wrist joints) between 1988 and 1993. A follow-up of at least 2 years has been provided for 26 patients; the average follow-up is 51 months. 97% of the operated wrists could be controlled. Carpal height, ulnar translation, pain, range of motion, complications and Larsen index we...

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