Cultural adaptation and psychometric evaluation of the Swedish version of the Reproductive Concerns After Cancer (RCAC) scale

BACKGROUND: Reproductive concerns are common among young cancer survivors and include worries related to different aspects of fertility and parenthood. The Reproductive Concerns After Cancer (RCAC) scale is an 18-item scale with six dimensions, developed to capture a variety of such concerns. The aim of the present study was to describe the cultural adaptation of the RCAC scale into Swedish and evaluate its psychometric properties among young women who have undergone treatment for cancer. METHODS: The RCAC was forward translated from English into Swedish and assessed for cultural adaptation based on a two-panel approach followed by cognitive interviews with the target group. For the psychometric evaluation, a Swedish cohort of 181 female young adult breast cancer survivors completed a survey including the RCAC scale approximately 1.5 years post-diagnosis. Psychometric properties were examined by analyses of construct validity (confirmatory factor analysis and convergent validity), data quality (score distribution, floor and ceiling effects), reliability and known-groups validity. RESULTS: The confirmatory factor analysis yielded an acceptable fit (RMSEA 0.08, SRMR 0.09, CFI 0.92). Convergent validity was demonstrated by a negative correlation of moderate size (- 0.36) between the RCAC total score and the emotional function scale of the EORTC QLQ-C30. Reliability measured with Revelle Ω total was satisfactory (0.73-0.92) for five of the dimensions, and poor for the dimension Becoming pregnant (Revelle Ω total = 0.60); Cronbach's alpha showed a similar pattern. Known-groups validity was indicated by significant RCAC mean score differences (MD), reflecting more concerns among women with a certain (MD 4.56 [95% CI 3.13 to 5.99]) or uncertain (MD 3.41 [95% CI 1.68 to 5.14]) child wish compared to those with no wish for (additional) children. CONCLUSION: The translation and cultural adaptation of the Swedish RCAC has resulted in a scale demonstrating construct and known-groups validity, and satisfactory reliability for five of six dimensions. The dimension Becoming pregnant showed non-optimal internal consistency and should undergo further evaluation. The Swedish RCAC is recommended to be used in research settings for measurement of concerns related to fertility and parenthood in young women with cancer

Translation and validation of non-English versions of the Ankylosing Spondylitis Quality of Life (ASQOL) questionnaire

BACKGROUND: The Ankylosing Spondylitis Quality of Life (ASQOL) questionnaire is a unidimensional, disease-specific measure developed in the UK and the Netherlands. This study describes its adaptation into other languages. METHODS: The UK English ASQOL was translated into US English; Canadian French and English; French; German; Italian; Spanish; and Swedish (dual-panel methods). Cognitive debriefing interviews were conducted with AS patients. Psychometric/scaling properties were assessed using data from two Phase III studies of adalimumab. Baseline and Week-2 data were used to assess test-retest reliability. Validity was determined by correlation of ASQOL with SF-36 and BASFI and by discriminative ability of ASQOL based on disease severity. Item response theory (Rasch model) was used to test ASQOL's scaling properties. RESULTS: Cognitive debriefing showed the new ASQOL versions to be clear, relevant and comprehensive. Sample sizes varied, but were sufficient for: psychometric/scaling assessment for US English and Canadian English; psychometric but not scaling analyses for German; and preliminary evidence of these properties for the remaining languages. Test-retest reliability and Cronbach's alpha coefficients were high: US English (0.85, 0.85), Canadian English (0.87, 0.86), and German (0.77, 0.79). Correlations of ASQOL with SF-36 and BASFI for US English, Canadian English, and German measures were moderate, but ASQOL discriminated between patients based on perceived disease severities (p < 0.01). Results were comparable for the other languages. US English and Canadian English exhibited fit to the Rasch model (non-significant p-values: 0.54, 0.68), confirming unidimensionality. CONCLUSION: The ASQOL was successfully translated into all eight languages. Psychometric properties were excellent for US English, Canadian English, and German, and extremely promising for the other languages

Adapting Quality of Life Instruments

Due to the international nature of many clinical studies and trials it is often necessary to produce several language versions of specific measures. While it is generally acknowledged that it is necessary to produce versions that are conceptually equivalent, the best method of achieving this is more controversial. It is commonly stated that there is a gold-standard method, which involves forward and backward translation. However, no evidence has been presented to support this view. This paper argues that the "gold-standard" method is difficult to support and describes an alternative method involving dual translation panels that has been used in the production of all adaptations of needs-based quality of life instruments

Person-Centred Dermatology Self-care Index: a translation and validation study

Objective: Self-management is important to successfully managing chronic skin diseases. The Person-Centred Dermatology Self-care Index (PeDeSI) is a self-efficacy theory-based questionnaire tool to measure education and support needs of adults with long-term skin conditions. The aim of this research was to translate the PeDeSI into German (PeDeSI-G) and to explore the validity of this tool. Methods: The instrument was translated by five translators working independently. User understanding and relevance were evaluated by nurses, patients and physicians. The translated version was modified and applied in a subsequent validation study. Demographic and other variables, PeDeSI-G and Dermatology Life Quality Index (DLQI) scores of dermatological patients were obtained. Results: PeDeSi-G and DLQI scores were obtained from 100 patients. A conceptually and semantically equivalent German translation of the PeDeSI was developed. There was a statistically significant difference between in- and outpatients (p<0.001). PeDeSI-G scores were most strongly correlated with disease duration and DLQI scores. Conclusions: Validation results indicate that the PeDeSI-G is able to discriminate between patients with different educational and support needs for this patient group. Newly diagnosed patients and patients admitted to the hospital for the first time might benefit most from the PeDeSI-G assessment. The PeDeSI-G is a valid tool for assessing and evaluating the support needs of German-speaking patients with chronic skin diseas