Sigrid R Crawford’s research while affiliated with Galen Research Ltd and other places

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Publications (14)


Adapting the Asthma Life Impact Scale (ALIS) for use in Southern European (Italian) and Eastern European (Russian) cultures
  • Article

September 2011

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28 Reads

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S R Crawford

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N C Oprandi

The Asthma Life Impact Scale (ALIS) is a disease-specific measure used to assess the quality-of-life of people with asthma. It was developed in the UK and US and has proven to be acceptable to patients, to have good psychometric properties, and to be unidimensional. This paper reports on the adaptation and validation of the ALIS for use in representative Southern European (Italian) and Eastern European (Russian) languages. The ALIS was translated for both cultures using the dual-panel process. The newly translated versions were then tested with asthma patients to ensure face and content validity. Psychometric properties of the new language versions were assessed via a test?re-test postal survey conducted in both countries. It is possible that some cultural or language differences still exist between the different language versions. Further research should be undertaken to determine responsiveness. Further studies designed to determine the clinical validity of the Italian ALIS would be valuable. Linguistic nuances were easily resolved during the translation process for both language adaptations. Cognitive debriefing interviews (Russia n=9, male=11.1%, age mean (SD)=55.4 (13.2); Italy n=15, male=66.7%, age mean (SD)=63.5 (11.2)) indicated that the ALIS was easy to read and acceptable to patients. Psychometric testing was conducted on the data (Russia n=61, age mean (SD)=40.7 (15.4); Italy n=71, male=42.6%, age mean (SD)=49.5 (14.1)). The results showed that the new versions of the ALIS were consistent (Russian and Italian Cronbach's alpha=0.92) and reproducible (Russian test-re-test=0.86; Italian test-re-test=0.94). The Italian adaptation showed the expected correlations with the NHP and the Russian adaptation showed strong correlations with the CASIS and CAFS and weak-to-moderate correlations with %FEV1 and %PEF. In both adaptations the ALIS was able to distinguish between participants based on self-reported general health, self-reported severity, and whether or not they were hospitalized in the previous week.


Can We Rely on the Dermatology Life Quality Index as a Measure of the Impact of Psoriasis or Atopic Dermatitis?

September 2011

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54 Reads

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119 Citations

Journal of Investigative Dermatology

The Dermatology Life Quality Index (DLQI) is a widely used health-related quality of life measure. However, little research has been conducted on its dimensionality. The objectives of the current study were to apply Rasch analysis to DLQI data to determine whether the scale is unidimensional, to assess its measurement properties, test the response format, and determine whether the measure exhibits differential item functioning (DIF) by disease (atopic dermatitis versus psoriasis), gender, or age group. The results show that there were several problems with the scale, including misfitting items, DIF by disease, age, and gender, disordered response thresholds, and inadequate measurement of patients with mild illness. As the DLQI did not benefit from the application of Rasch analysis in its development, it is argued that a new measure of disability related to dermatological disease is required. Such a measure should use a coherent measurement model and ensure that items are relevant to all potential respondents. The current use of the DLQI as a guide to treatment selection is of concern, given its inadequate measurement properties.


Table 1 Demographics for the translations, cognitive debriefing interviews and postal validation survey
Table 2 Questionnaire descriptive scores
Mean QoL-AGHDA scores by self-perceived general health in the Czech Republic (p < .01).
Mean QoL-AGHDA scores by self-reported physical activity (Poland and Serbia).
Mean QoL-AGHDA scores by selef-perceived satisfaction of VAS physical activity (Poland and Serbia). VAS scores below the median indicate less satisfaction with physical activity

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Adaptation of the QoL-AGHDA scale for adults with growth hormone deficiency in four Slavic languages
  • Article
  • Full-text available

August 2011

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276 Reads

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3 Citations

Health and Quality of Life Outcomes

The Quality of Life in Adult Growth Hormone Deficiency Assessment (QoL-AGHDA) is a disease-specific quality of life measure specific to individuals who are growth hormone deficient. The present study describes the adaptation of the QoL-AGHDA for use in the following four Slavic languages; Czech, Polish, Serbian and Slovakian. The study involved three stages in each language; translation, cognitive debriefing and validation. The validation stage assessed internal consistency (Cronbach's alpha), reproducibility (test-retest reliability using Spearman's rank correlations), convergent and divergent validity (Correlations with the NHP) and known group validity. The QoL-AGHDA was successfully translated into the target languages with minimal problems. Cognitive debriefing interviewees (n = 15-18) found the measures easy to complete and identified few problems with the content. Internal consistency (Czech Republic = 0.91, Poland = 0.91, Serbia = 0.91 and Slovakia = 0.89) and reproducibility (Czech Republic = 0.91, Poland = 0.91, Serbia = 0.88 and Slovakia = 0.93) were good in all adaptations. Convergent and divergent validity and known group validity data were not available for Slovakia. The QoL-AGHDA correlated as expected with the NHP scales most relevant to GHD. The QoL-AGHDA was able to distinguish between participants based on a range of variables. The QoL-AGHDA was successfully adapted for use in the Czech Republic, Poland, Serbia and Slovakia. Further validation of the Slovakian version would be beneficial. The addition of these new language versions will prove valuable to multinational clinical trials and to clinical practice in the respective countries.

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Citations (7)


... Among impact concepts, only limitations in self-care (n = 1, 6.2%), gardening (n = 2, 12.5%) and short-term memory (n = 1, 6.2%) emerged in the final set of interviews. Similarly, difficulties with housework and chores (inside and outside of the house) and self-care have been described in the MDS literature [43], supporting them as relevant to the MDS patient experience. Impacts to short-term memory, however, were not. ...

Reference:

Content validity of patient-reported outcomes for use in lower-risk myelodysplastic syndromes
Investigation of the Impact of Myelodysplasia (MDS) From the Patients' Perspective
  • Citing Article
  • November 2011

Blood

... The results of a study conducted by the Myelodysplastic Syndromes Foundation on data from 29 patient forums in the US and Europe [29] showed fatigue to be the symptom that has the greatest effect on patients' QOL, although a fundamental role is also played by the time required to manage the disease (doctors' appointments, diagnostic tests, transfusions and management of adverse events). Similar conclusions were drawn by a study conducted by Twiss et al. [30]: on a sample of 23 transfusion-experienced patients, in addition to the restrictions imposed by the transfusion procedure in itself, the discomfort of ironchelating therapy was also seen to be relevant. Schuler [31] reports that erythropoiesis-stimulating factors, such as erythropoietin and darbepoietin, allow a temporary improvement in the QOL of various subgroups of patient with MDS. ...

Myelodysplasia (MDS) patients' Experiences with Blood Transfusions
  • Citing Article
  • November 2011

Blood

... For the evaluation of HRQoL in PH, patients receive a validated PH specific survey, the so-called Cambridge Pulmonary Hypertension Outcome Review (CAM-PHOR) for a thorough assessment of disease specific HRQoL [12]. Previous studies have shown significant positive correlations between the distance walked in the 6MWT and HRQoL [13][14][15]. ...

The German adaptation of the Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR)

Health and Quality of Life Outcomes

... Structural validity was analyzed in 8 studies and the qualities were mostly determined by the sample size. 111,[113][114][115]119,[124][125][126] ...

The living with chronic obstructive pulmonary disease scale was successfully adapted for use in Southern European (Italian and Spanish) and Eastern European (Russian) cultures
  • Citing Article
  • May 2012

Journal of Clinical Epidemiology

... While its classical psychometric properties (including test-retest reliability, internal consistency, and construct validity) have generally been found to be adequate, more indepth studies using Rasch analysis (see below) have highlighted that using the DLQI as a unidimensional instrument may not be acceptable, since its total score might not reflect the different domains explored by the questionnaire [74,75]. In addition, the item responses of more than half of the questions are affected by external factors such as age, gender, diagnosis [74][75][76], and nationality [76,77], not solely by the level of HRQoL impairment. ...

Can We Rely on the Dermatology Life Quality Index as a Measure of the Impact of Psoriasis or Atopic Dermatitis?
  • Citing Article
  • September 2011

Journal of Investigative Dermatology

... 38 Em países como a Alemanha, Brasil, Dinamarca e Holanda, a melhoria da QV foi quantificada atráves da aplicação de um questionário -"Avaliação da QV no défice da HC do Adulto" (QOL-AGHDA). [42][43][44] Em Portugal, não existe nenhum questionário validado na língua portuguesa para avaliar a QV nestes pacientes. A adição destes questionários seria uma mais-valia na prática clínica. ...

Adaptation of the QoL-AGHDA scale for adults with growth hormone deficiency in four Slavic languages

Health and Quality of Life Outcomes