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

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Publications (14)


Table 1 Demographic information
Table 2 Validation sample; disease information (n = 107)
Table 6 CAMPHOR scale scores by disease factors (n = 100-102)
Mean CAMPHOR scales scores by NHYA classifications.
The German adaptation of the Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR)
  • Article
  • Full-text available

September 2012

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272 Reads

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40 Citations

Health and Quality of Life Outcomes

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Rudolf Speich

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Background Individuals with precapillary pulmonary hypertension (PH) experience severely impaired quality of life. A disease-specific outcome measure for PH, the Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) was developed and validated in the UK and subsequently adapted for use in additional countries. The aim of this study was to translate and assess the reliability and validity of the CAMPHOR for German-speaking populations. Methods Three main adaptation stages involved; translation (employing bilingual and lay panels), cognitive debriefing interviews with patients and validation (assessment of the adaptation’s psychometric properties). The psychometric evaluation included 107 patients with precapillary PH (60 females; age mean (standard deviation) 60 (15) years) from 3 centres in Austria, Germany and Switzerland. Results No major problems were found with the translation process with most items easily rendered into acceptable German. Participants in the cognitive debriefing interviews found the questionnaires relevant, comprehensive and easy to complete. Psychometric analyses showed that the adaptation was successful. The three CAMPHOR scales (symptoms, activity limitations and quality of life) had excellent test-retest reliability correlations (Symptoms = 0.91; Activity limitations = 0.91; QoL = 0.90) and internal consistency (Symptoms = 0.94; Activity limitations = 0.93; QoL = 0.94). Predicted correlations with the Nottingham Health Profile provided evidence of the construct validity of the CAMPHOR scales. The CAMPHOR adaptation also showed known group validity in its ability to distinguish between participants based on perceived general health, perceived disease severity, oxygen use and NYHA classification. Conclusions The CAMPHOR has been shown to be valid and reliable in the German population and is recommend for use in clinical practice.

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PWE-229 Assessing patient reported outcome in Crohn's disease

May 2012

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33 Reads

Gut

Introduction Research into the impact of Crohn's Disease (CD) and its treatment on the patient relies on outdated and inappropriate generic questionnaires. These do not address important impacts of the illness and ask questions of limited relevance. As part of a study to develop CD-specific patient-reported outcome measures (PROMS), qualitative interviews were conducted with CD patients. Methods Item generation was based on the International Classification of Functioning, Disability and Health (ICF) and the needs-based quality of life (QoL) models. Interviewees were recruited via out-patient clinics and interviewed in a private room or at the researcher's offices. Interviews covered all aspects of the impact of CD and its treatment and were audio-recorded. Transcripts were content analysed to identify impacts on symptoms, activity limitations and QoL. Results 26 patients (69.2% female; aged 25–68; mean (SD): 46.2 (14.7) years) were interviewed. Participants had a wide range of duration of CD (2–40; mean (SD): 13.0 (12.9) years). 2641 statements relating to the impact of CD were identified. These statements fell into three major categories with a number of sub-themes identified: Symptoms (such as pain, fatigue and emotional impairment), activity limitations (such as difficulties with walking, lifting and jobs around the house) and QoL (including preoccupation with the disease, self-conscious of appearance and reduced socialisation). Conclusion The study was successful in identifying the most important impacts of CD from the patients' perspective. In addition to generating potential items for the new measure the findings of the interviews have implications for clinical practice and clinical trial design. Audit of services and assessment of new interventions for CD should assess whether or not these impacts of CD are improved. Only then will it be possible to determine whether interventions are of true benefit to the patient. Competing interests None declared.


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

May 2012

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24 Reads

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4 Citations

Journal of Clinical Epidemiology

The living with chronic obstructive pulmonary disease (LCOPD) scale was developed in the United Kingdom and the United States to assess the quality of life (QoL) of people with chronic obstructive pulmonary disease. The scale was shown to be well accepted by patients, to be unidimensional, and to have very good psychometric properties. This article reports on the adaptation of the measure for use in representative Southern European (Italian and Spanish) and Eastern European (Russian) languages. The same methodology was used in each country: translation panels were held to produce new language versions. These were then tested with patients to ensure face and content validity. Finally, test-retest postal surveys were conducted to establish internal consistency, reproducibility, and construct validity. Few problems were found in translating the LCOPD, and patient interviews indicated that the measure was considered relevant and easy to complete. The validation surveys showed that the new versions of the LCOPD were consistent, reproducible, and had good construct validity. The psychometric properties of the new versions were similar to those found for the original U.K. and U.S. versions. The study was successful in adapting the LCOPD for use in Southern and Eastern European languages.


Dupuytren’s Disease and Quality of Life

April 2012

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32 Reads

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1 Citation

DUPUYTREN’S DISEASE AND QUALITY OF LIFE S. P. McKenna1, J. N. Wilburn1, S. R. Crawford1, D. Perry-Hinsley2, A. Bayat2 1Galen Research Ltd, Manchester, Greater Manchester, United Kingdom; 2Plastic and Reconstructive Surgery Research, Manchester, Greater Manchester, United Kingdom Patient interviews were conducted to explore the impact of Dupuytren’s Disease (DD) on patients’ quality of life (QoL) and to identify implications for clinical practice. Qualitative interviews were conducted with DD patients attending outpa- tient clinics in the UK. Data were transcribed and underwent thematic analysis to identify the key impact areas and common themes in individuals’ personal experi- ences. Thirty-four DD patients (73.5% male; aged 41–80 years; mean [SD]: 64.2 (12.5) years) were interviewed. The sample had a wide range of DD duration (0.5–40 years; mean [SD] 12.6 (9.9) years). Nine hundred fifty-three statements describing the impact of DD were identified from the transcripts. These statements fell into three major categories of outcome; emotional impairment (four themes: loss of confidence in hand, reduced pleasure in life, embarrassment and difficulty with concentration), activity limitations (10 themes, including difficulty dressing, gripping, employment limitations and in personal care) and QoL (11 themes, includ- ing feelings of fragility, avoidance of physical contact, self-consciousness, loss of independence, difficulty planning and reduced socialization). Trials designed to determine the benefits of new interventions for DD should include assessments of changes in emotional distress, activity limitations and QoL. Only then will it be possible to determine whether the intervention is of true benefit to the patient. Such measures should be specific to DD in order to ensure that real changes are identified. The study was the first stage in the development patient-based, DD-specific outcome scales. These scales will be thoroughly tested for reproducibility (reliability) and construct validity and adapted for use in multinational clinical studies and routine clinical practice


Investigation of the Impact of Myelodysplasia (MDS) From the Patients' Perspective

November 2011

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16 Reads

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2 Citations

Blood

5049 Introduction Little research is currently available on the impact of MDS from the patients' perspective. Where research has been conducted it has predominantly used generic cancer outcome measures. Such measures do not provide an accurate assessment of MDS patients as they miss important aspects of the condition. A qualitative study was conducted with MDS patients to investigate how their lives are affected by the condition. Methods Qualitative, unstructured interviews were conducted with patients. Verbatim transcripts of the interviews were analysed thematically to assess the impact of MDS in terms of symptoms experienced, activity limitations and quality of life (QoL). Emergent themes were identified, clustered and harmonised. Investigation of issues related to impairments and activity limitations were guided by the World Health Organizations (WHO) classification of outcomes related to health and injury. Investigation of QoL issues was guided by the needs-based model of QoL (Hunt SM, McKenna SP. The QLDS: A scale for the measurement of quality of life in depression. (1992). Health Policy 22; 307–319). This model identifies several core fundamental needs that are important to an individual's QoL and adjustment to society. Illness affects QoL by preventing the satisfaction of these needs. Results The sample included 30 participants (male 17 (56.7%); mean (SD) age 65.5 (11.3) years with low to intermediate-1 risk MDS. Illness information for the sample is shown in Table 1. The analyses identified several symptoms. The most frequently reported symptoms were; fatigue (97%), breathlessness (60%), increased infections (60%), sleep problems (53%), cognitive problems (50%), temperature fluctuations (47%), increased bruising (40%) and bleeding (10%), pain (30%), depression (23%) and anxiety (10%). Several common functions were affected by MDS, including; standing, walking, bending, lifting, carrying and rising from sitting. Various more complex functions were also affected such as the ability to socialise, shop and do jobs around the house. A total 33 QoL issues were identified. Nine fundamental needs were affected by MDS; subsistence, safety and security, affection, understanding, participation, leisure, self-actualisation, identity and independence. Conclusions The study was successful in developing outcome models describing how MDS affects symptoms, activity limitations and QoL. Many symptoms were experienced including several in addition to those directly associated with anaemia. Functioning was also frequently affected. A wide range of QoL issues were identified with several fundamental needs impaired to some extent. Following this study a large bank of potential items has been created that will aid the development of MDS-specific outcome scales assessing symptoms, activity limitations and QoL. Disclosures McKenna: Celgene Ltd: Consultancy, Research Funding. Twiss:Celgege Ltd: Consultancy, Research Funding. Wilburn:Celegene Ltd: Consultancy, Research Funding. Crawford:Celegene: Consultancy, Research Funding. Loth:Celgene Ltd: Employment.


Myelodysplasia (MDS) patients' Experiences with Blood Transfusions

November 2011

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11 Reads

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1 Citation

Blood

5033 Introduction Although the main treatment for MDS is blood transfusions, scarce information is available on patients' experiences of the treatment. Only one relevant study could be identified which reported that patients have a preference for being transfusion independent (Szende et al. Valuation of transfusion-free living in MDS: results of health utility interviews with patients. (2009). Health Qual Life Outcomes, 7:81). As part of a study investigating the effect of MDS and its treatment on quality of life, patients were asked about their experiences with transfusions. Methods Qualitative, unstructured interviews were conducted with MDS patients. Verbatim transcripts were produced and subjected to Interpretative Phenomenological Analysis (IPA). IPA aims at gaining an understanding of patients' experiences from their own perspective. Themes are generated based on issues identified during the interview process. Results The sample included 23 patients with blood transfusion experience (male = 11 (47.8%); mean (SD) Age=65.3 (11.2)). Of the patients interviewed, 9 (39.1%) were currently receiving regular transfusions, 5 (21.7%) had been transfusion dependent previously and 9 (39.1%) had some transfusion experience. Illness information for these interviewees is shown in the Table 1. Five major themes were identified in the analyses; positive aspects of transfusions, the cyclic nature of symptoms, transfusion-related limitations on functioning, associated iron chelation therapy and problems with actually receiving the transfusions. Transfusions were perceived positively by some patients as they relieve patients' everyday symptoms. However, these benefits diminish between transfusions leading to cycles of good and poor symptoms, functioning and psychological distress. Limitations to patients' lives resulted from frequent and often long trips to hospital. Patients reported negative experiences with the iron chelating drug Deferrioxamine which is needed to reduce iron poisoning. The drug is generally administered subcutaneously by means of a battery operated pump and is usually worn for several hours a day causing pain and discomfort. The transfusions were also reported to be boring, uncomfortable and at times painful. Conclusions Transfusions can have a large negative impact on patient's lives. The results suggest there is a need for alternative forms of treatment for patients with MDS. Further quantitative work assessing patients' experiences with transfusions is required. Disclosures Twiss: Celege Ltd: Consultancy, Research Funding. McKenna:Celgene Ltd: Consultancy, Research Funding. Crawford:Celegene: Consultancy, Research Funding. Wilburn:Celegene Ltd: Consultancy, Research Funding. Loth:Celgene Ltd: Employment.






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