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2. Development of a Specific Variant of Patient Benefit Index (PBI) Assessing Patient Needs, Goals and Benefits in Rosacea Treatment

Author

Augustin M, Sommer R, Blome C, Kirsten N, and Langenbruch A

Subjects
patient needs, treatment goals, disease burden, health-related quality of life, patient benefit index, rosacea, Medicine (General), R5-920
Abstract

Matthias Augustin, Rachel Sommer, Christine Blome, Natalia Kirsten, Anna Langenbruch German Center for Health Services Research in Dermatology (CVderm), Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, GermanyCorrespondence: Matthias Augustin, German Center for Health Services Research in Dermatology (CVderm), Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Martinistraße 52, Hamburg, 20246, Germany, Tel +49 40 7410 55428, Fax +49 40 7410 55348, Email m.augustin@uke.deIntroduction: Evaluation of patient-reported outcomes including health-related quality of life (HRQoL) and perceived benefits from treatment has become a fundamental component of medical decision-making. Standardized evaluation of treatment benefits in rosacea based on patient preferences is still lacking.Objective: Development and validation of an instrument for recording patient-defined benefits in rosacea therapy based on the Patient Benefit Index (PBI) methodology.Patients and Methods: In an open survey of n = 50 patients, potential benefits of therapy from the patient’s perspective were examined. The generated item pool was combined with pre-existing PBI items for other skin conditions and reviewed by an expert panel of dermatologists, psychologists and patients. Items were condensed to n = 25 and converted into a Likert-scaled questionnaire. The validity and feasibility of the resulting Patient Benefit Index for rosacea (PBI-RO) were tested on individuals with rosacea recruited from a German rosacea patient organization.Results: N = 446 patients with rosacea completed the PBI-RO. The internal consistencies measured by Cronbach’s alpha were high (Patient Needs Questionnaire [PNQ] 0.94). Mean PBI-RO was 1.9 ± 1.2 (scale from 0 = no benefit to 4 = maximum benefit), 23.5% of the patients experienced a PBI-RO < 1 (no clinically relevant benefit). The PBI-RO correlated with HRQoL, health state, current extent of rosacea lesions and treatment satisfaction. The highest correlation was found between PBI-RO and satisfaction with previous treatment (r = − 0.59, p < 0.001); correlation with the extent of rosacea lesions was low (r = 0.16, p < 0.001).Conclusion: The PBI-RO shows satisfying internal consistency and construct validity. It offers the option of a patient-weighted evaluation of the therapeutic benefit of rosacea therapy and may add to more stringent goal orientation in therapy.Keywords: patient needs, treatment goals, disease burden, health-related quality of life, Patient Benefit Index, rosacea

Published
2023

3. Determining the Minimal Important Difference for the Wound-QoL Questionnaire

Author

Topp J, Blome C, Augustin M, Mohr N, Debus ES, Diener H, and Sommer R

Subjects
mid, minimal important difference, health-related quality of life, chronic wounds, Medicine (General), R5-920
Abstract

Janine Topp,1 Christine Blome,1 Matthias Augustin,1 Nicole Mohr,1 Eike Sebastian Debus,2 Holger Diener,2 Rachel Sommer1 1Institute for Health Services Research in Dermatology and Nursing (IVDP), German Center for Health Services Research in Dermatology (CVderm), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, Germany; 2Department of Vascular Medicine, University Medical Center Hamburg‐Eppendorf (UKE), Hamburg, GermanyCorrespondence: Rachel SommerInstitute for Health Services Research in Dermatology and Nursing (IVDP), German Center for Health Services Research in Dermatology (CVderm), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, GermanyTel +49 (0) 40 7410 24724Fax +49 (0) 40 7410 40160Email r.sommer@uke.deBackground: The questionnaire for the quality of life with chronic wounds (Wound-QoL) is a valid and reliable instrument to determine the disease-specific health-related QoL of patients with chronic wounds. For the interpretation of HRQoL scores, it is additionally important to know which differences in scores are considered meaningful. The minimal important difference (MID) is defined as a change in HRQoL that a patient would consider meaningful, such that the patient would judge a treatment to be beneficial and worthy of repeating.Objective: To interpret changes in the Wound-QoL scores and draw conclusions regarding the relevance of detected changes; the purpose of this study was to estimate the MID of the Wound-QoL global score and its subscales for patients with chronic wounds.Patients and Methods: Patients completed the Wound-QoL before and four to six weeks after treatment and additionally gave a global rating of wound status change after treatment. The global rating of change served as an anchor question. MIDs were calculated based on an anchor-based and a distribution-based method.Results: In total, 227 patients participated in the study. The mean age of the study population was 66.9 (± 12.7) median was 69.5, and 51.5% of the patients were female. MIDs for the Wound-QoL global score ranged from 0.47 to 0.52, proposing an overall estimation of 0.50.Conclusion: The results can be used to measure and interpret changes in wound-specific QoL over time.Keywords: MID, minimal important difference, health-related quality of life, chronic wounds

Published
2021

4. Validation of the Spanish Wound-QoL Questionnaire

Author

Conde Montero, E., Sommer, R., Augustin, M., Blome, C., Cabeza Martínez, R., Horcajada Reales, C., Alsina Gibert, M., Ramón Sapena, R., Peral Vázquez, A., Montoro López, J., Guisado Muñoz, S., Pérez Jerónimo, L., de la Cueva Dobao, P., Kressel, N., and Mohr, N.

Published
2021
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9. Investigating the supply chain agility–Innovation link : The role of organizational context

Author

Aslam, H., Blome, C., Schleper, M.C., Ramish, A., Bajwa, S.U., Aslam, H., Blome, C., Schleper, M.C., Ramish, A., and Bajwa, S.U.

Abstract

Previous literature provides ample analyses of the antecedents of supply chain agility, but the organizational context has generally been neglected. Setting up the right organizational context is important for dynamic capabilities such as supply chain agility, especially in turbulent times. In this research, we study organizational context from two aspects as antecedents of supply chain agility, i.e., a firm’s performance orientation context and its social orientation context. Based on the dynamic capabilities view, the literature on organizational context, supply chain agility, and innovation, we develop our hypotheses. We investigate the previously overlooked impact of supply chain agility on innovation performance, as we find that supply chain agility not only helps to prevent and repair short-term damage but also promotes innovation in the long term. We also consider the moderating role of the organization’s complementarity with its key suppliers in this relationship. Structural equation modeling is applied to investigate the proposed research hypotheses using lagged survey data with multiple respondents from the manufacturing sector in Pakistan.

Published
2024

10. Atomic-Scale Visualization of Inertial Dynamics

Author

Lindenberg, A. M., Larsson, J., Sokolowski-Tinten, K., Gaffney, K. J., Blome, C., Synnergren, O., Sheppard, J., Caleman, C., MacPhee, A. G., Weinstein, D., Lowney, D. P., Allison, T. K., Matthews, T., Falcone, R. W., Cavalieri, A. L., Fritz, D. M., Lee, S. H., Bucksbaum, P. H., Reis, D. A., Rudati, J., Fuoss, P. H., Kao, C. C., Siddons, D. P., Pahl, R., Als-Nielsen, J., Duesterer, S., Ischebeck, R., Schlarb, H., Schulte-Schrepping, H., Schneider, J., von der Linde, D., Hignette, O., Sette, F., Chapman, H. N., Lee, R. W., Hansen, T. N., Techert, S., Wark, J. S., Bergh, M., Huldt, G., van der Spoel, D., Timneanu, N., Hajdu, J., Akre, R. A., Bong, E., Krejcik, P., Arthur, J., Brennan, S., Luening, K., and Hastings, J. B.

Published
2005

11. Quality of life measurement in teledermatology. Position statement of the European Academy of Dermatology and Venereology Task Forces on Quality of Life and Patient Oriented Outcomes and Teledermatology.

Author

Chernyshov, P. V., Finlay, A. Y., Tomas‐Aragones, L., Tognetti, L., Moscarella, E., Pasquali, P., Manolache, L., Pustisek, N., Svensson, A., Marron, S. E., Bewley, A., Salavastru, C., Suru, A., Koumaki, D., Linder, D., Abeni, D., Augustin, M., Blome, C., Salek, S. S., and Evers, A. W. M.

Subjects
QUALITY of life measurement, TASK forces, QUALITY of life, DERMATOLOGY, CHRONICALLY ill
Abstract

Many events, including the COVID‐19 pandemic, have accelerated the implementation of teledermatology pathways within dermatology departments and across healthcare organizations. Quality of Life (QoL) assessment in dermatology is also a rapidly developing field with a gradual shift from theory to practice. The purpose of this paper organized jointly by the European Academy of Dermatology and Venereology (EADV) Task Force (TF) on QoL and patient‐oriented outcomes and the EADV TF on teledermatology is to present current knowledge about QoL assessment during the use of teledermatology approaches, including data on health‐related (HR) QoL instruments used in teledermatology, comparison of influence of different treatment methods on HRQoL after face‐to‐face and teledermatology consultations and to make practical recommendations concerning the assessment of QoL in teledermatology. The EADV TFs made the following position statements: HRQoL assessment may be an important part in most of teledermatology activities; HRQoL assessment may be easily and effectively performed during teledermatology consultations. It is especially important to monitor HRQoL of patients with chronic skin diseases during lockdowns or in areas where it is difficult to reach a hospital for face‐to‐face consultation; regular assessment of HRQoL of patients with skin diseases during teledermatology consultations may help to monitor therapy efficacy and visualize individual patient's needs; we recommend the use of the DLQI in teledermatology, including the use of the DLQI app which is available in seven languages; it is important to develop apps for dermatology‐specific HRQoL instruments for use in children (for example the CDLQI and InToDermQoL) and for disease‐specific instruments. [ABSTRACT FROM AUTHOR]

Published
2024
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15. The Science Performance of JWST as Characterized in Commissioning

Author

Rigby, J, Perrin, M, McElwain, M, Kimble, R, Friedman, S, Lallo, M, Doyon, R, Feinberg, L, Ferruit, P, Glasse, A, Rieke, M, Rieke, G, Wright, G, Willott, C, Colon, K, Milam, S, Neff, S, Stark, C, Valenti, J, Abell, J, Abney, F, Abul-Huda, Y, Scott Acton, D, Adams, E, Adler, D, Aguilar, J, Ahmed, N, Albert, L, Alberts, S, Aldridge, D, Allen, M, Altenburg, M, Álvarez-Márquez, J, Alves De Oliveira, C, Andersen, G, Anderson, H, Anderson, S, Argyriou, I, Armstrong, A, Arribas, S, Artigau, E, Arvai, A, Atkinson, C, Bacon, G, Bair, T, Banks, K, Barrientes, J, Barringer, B, Bartosik, P, Bast, W, Baudoz, P, Beatty, T, Bechtold, K, Beck, T, Bergeron, E, Bergkoetter, M, Bhatawdekar, R, Birkmann, S, Blazek, R, Blome, C, Boccaletti, A, Böker, T, Boia, J, Bonaventura, N, Bond, N, Bosley, K, Boucarut, R, Bourque, M, Bouwman, J, Bower, G, Bowers, C, Boyer, M, Bradley, L, Brady, G, Braun, H, Breda, D, Bresnahan, P, Bright, S, Britt, C, Bromenschenkel, A, Brooks, B, Brooks, K, Brown, B, Brown, M, Brown, P, Bunker, A, Burger, M, Bushouse, H, Cale, S, Cameron, A, Cameron, P, Canipe, A, Caplinger, J, Caputo, F, Cara, M, Carey, L, Carniani, S, Carrasquilla, M, Carruthers, M, Case, M, Rigby, J [0000-0002-7627-6551], McElwain, M [0000-0003-0241-8956], Ferruit, P [0000-0001-8895-0606], Rieke, M [0000-0002-7893-6170], Willott, C [0000-0002-4201-7367], and Apollo - University of Cambridge Repository

Subjects
Infrared astronomy, Observatories, Astronomical instrumentation
Abstract

This paper characterizes the actual science performance of the James Webb Space Telescope (JWST), as determined from the six month commissioning period. We summarize the performance of the spacecraft, telescope, science instruments, and ground system, with an emphasis on differences from pre-launch expectations. Commissioning has made clear that JWST is fully capable of achieving the discoveries for which it was built. Moreover, almost across the board, the science performance of JWST is better than expected; in most cases, JWST will go deeper faster than expected. The telescope and instrument suite have demonstrated the sensitivity, stability, image quality, and spectral range that are necessary to transform our understanding of the cosmos through observations spanning from near-earth asteroids to the most distant galaxies.

Published
2023
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17. Entwicklung eines Fragebogens zur Messung patientenrelevanter Ziele und Nutzen in der äußerlichen Behandlung der Psoriasis

Author

Blome, C, Hülswitt, L, Meineke, A, Augustin, M, Ohm, F, Rusch, J, and Janke, TM

Subjects
ddc: 610, Medicine and health
Abstract

Hintergrund und Stand (inter)nationaler Forschung: Topika (äußerlich angewendete Präparate) sind wesentlicher Bestandteil der Behandlung von Hauterkrankungen. Ihre oft langfristige Anwendung kann erheblichen Zeitaufwand und Unannehmlichkeiten mit sich bringen. Verfügbare Instrumente [zum vollständigen Text gelangen Sie über die oben angegebene URL]

Published
2022
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19. Ultrafast X-ray diffraction

Author

Sokolowski-Tinten, K., Blome, C., Blums, J., Shymanovich, U., Nicoul, M., Cavalleri, A., Tarasevitch, A., Horn-von Hoegen, M., Kammler, M., von der Linde, D., Castleman, A. W., Jr., editor, Toennies, J.P., editor, Zinth, W., editor, Kobayashi, Takayoshi, editor, Okada, Tadashi, editor, Kobayashi, Tetsuro, editor, Nelson, Keith A., editor, and De Silvestri, Sandro, editor

Published
2005
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29. Ultrafast Bond Softening in Bismuth: Mapping a Solid's Interatomic Potential with X-Rays

Author

Fritz, D. M., Reis, D. A., Adams, B., Akre, R. A., Arthur, J., Blome, C., Bucksbaum, P. H., Cavalieri, A. L., Engemann, S., Fahy, S., Falcone, R. W., Fuoss, P. H., Gaffney, K. J., George, M. J., Hajdu, J., Hertlein, M. P., Hillyard, P. B., Hoegen, M. Horn-von, Kammler, M., Kaspar, J., Kienberger, R., Krejcik, P., Lee, S. H., Lindenberg, A. M., McFarland, B., Meyer, D., Montagne, T., Murray, É. D., Nelson, A. J., Nicoul, M., Pahl, R., Rudati, J., Schlarb, H., Siddons, D. P., Sokolowski-Tinten, K., Tschentscher, Th., von der Linde, D., and Hastings, J. B.

Published
2007
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30. Lebensqualität messen im Versorgungsalltag: Was sind die Barrieren aus Sicht der Versorgenden von Menschen mit chronischen Wunden?

Author

Blome, C, Protz, K, Augustin, M, and Topp, J

Subjects
ddc: 610, Medicine and health
Abstract

Hintergrund und Stand (inter)nationaler Forschung: Die Erhebung der gesundheitsbezogenen Lebensqualität (LQ) ist ein wichtiger Baustein einer patientenzentrierten Versorgung. Sie ermöglicht es den Versorgenden, Beeinträchtigungen aus Sicht der Betroffenen aufzudecken und zu adressieren [zum vollständigen Text gelangen Sie über die oben angegebene URL]

Published
2021
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31. Patientenseitige Therapieziele und -nutzen in der Behandlung der Epilepsie – Entwicklung einer neuen Patient Benefit Index-Version (PBI-Epilepsie)

Author

Klein, TM, Hamer, HM, Cunny, J, Westermayer, V, and Blome, C

Subjects
ddc: 610, Medicine and health
Abstract

Hintergrund: Epilepsie ist eine der häufigsten neurologischen Erkrankungen. Zu den wichtigsten Zielgrößen der Behandlung zählen die Anfallsfreiheit oder zumindest -reduktion sowie die gesundheitsbezogene Lebensqualität der Patient*innen. Therapieziele und -nutzen von Patient*innen [zum vollständigen Text gelangen Sie über die oben angegebene URL]

Published
2021
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35. Quality of life measurement in alopecia areata. Position statement of the European Academy of Dermatology and Venereology Task Force on Quality of Life and Patient Oriented Outcomes

Author

Chernyshov, P.V., primary, Tomas‐Aragones, L., additional, Finlay, A.Y., additional, Manolache, L., additional, Marron, S.E., additional, Sampogna, F., additional, Spillekom‐van Koulil, S., additional, Pustisek, N., additional, Suru, A., additional, Evers, A.W.M., additional, Salavastru, C., additional, Svensson, A., additional, Abeni, D., additional, Blome, C., additional, Poot, F., additional, Jemec, G.B.E., additional, Linder, D., additional, Augustin, M., additional, Bewley, A., additional, Salek, S.S., additional, and Szepietowski, J.C., additional

Published
2021
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36. Quality of life measurement in alopecia areata. Position statement of the European Academy of Dermatology and Venereology Task Force on Quality of Life and Patient Oriented Outcomes

Author

Chernyshov, P.V., Tomas-Aragones, L., Finlay, A.Y., Manolache, L., Marron, S.E., Sampogna, F., Spillekom-van Koulil, S., Pustisek, N., Suru, A., Evers, A.W., Salavastru, C., Svensson, A., Abeni, D., Blome, C., Poot, F., Jemec, G.B., Linder, D., Augustin, M., Bewley, A., Salek, S.S., Szepietowski, J.C., Chernyshov, P.V., Tomas-Aragones, L., Finlay, A.Y., Manolache, L., Marron, S.E., Sampogna, F., Spillekom-van Koulil, S., Pustisek, N., Suru, A., Evers, A.W., Salavastru, C., Svensson, A., Abeni, D., Blome, C., Poot, F., Jemec, G.B., Linder, D., Augustin, M., Bewley, A., Salek, S.S., and Szepietowski, J.C.

Abstract

Item does not contain fulltext, New treatment options may lead to an increased interest in using reliable and sensitive instruments to assess health-related quality of life in people with alopecia areata (AA). The purpose of this paper is to present current knowledge about quality of life assessment in AA. The dermatology-specific Dermatology Life Quality Index (DLQI) was the most widely reported health-related quality of life instrument used in AA. Three AA-specific (Alopecia Areata Symptom Impact Scale, Alopecia Areata Quality of Life Index and Alopecia Areata Patients' Quality of Life) and three hair disease-specific instruments (Hairdex, Scalpdex and 'hair-specific Skindex-29') were identified with a range of content and validation characteristics: there is little evidence yet of the actual use of these measures in AA. Scalpdex is the best-validated hair disease-specific instrument. Further extensive validation is needed for all of the AA-specific instruments. The European Academy of Dermatology and Venereology Task Force on Quality of Life and Patient Oriented Outcomes recommends the use of the dermatology-specific DLQI questionnaire, hair disease-specific Scalpdex and the alopecia areata-specific instruments the Alopecia Areata Symptom Impact Scale or Alopecia Areata Quality of Life Index, despite the limited experience of their use. We hope that new treatment methods will be able to improve both clinical signs and health-related quality of life in patients with AA. In order to assess the outcomes of trials on these new treatment methods, it would be helpful when further development and validation of AA-specific instruments is being encouraged and also conducted.

Published
2021

40. Quality of life measurement in alopecia areata. Position statement of the European Academy of Dermatology and Venereology Task Force on Quality of Life and Patient Oriented Outcomes

Author

Chernyshov, P. V., Tomas-Aragones, L., Finlay, A. Y., Manolache, L., Marron, S. E., Sampogna, F., Spillekom-van Koulil, S., Pustisek, N., Suru, A., Evers, A. W.M., Salavastru, C., Svensson, A., Abeni, D., Blome, C., Poot, F., Jemec, G. B.E., Linder, D., Augustin, M., Bewley, A., Salek, S. S., Szepietowski, J. C., Chernyshov, P. V., Tomas-Aragones, L., Finlay, A. Y., Manolache, L., Marron, S. E., Sampogna, F., Spillekom-van Koulil, S., Pustisek, N., Suru, A., Evers, A. W.M., Salavastru, C., Svensson, A., Abeni, D., Blome, C., Poot, F., Jemec, G. B.E., Linder, D., Augustin, M., Bewley, A., Salek, S. S., and Szepietowski, J. C.

Abstract

New treatment options may lead to an increased interest in using reliable and sensitive instruments to assess health-related quality of life in people with alopecia areata (AA). The purpose of this paper is to present current knowledge about quality of life assessment in AA. The dermatology-specific Dermatology Life Quality Index (DLQI) was the most widely reported health-related quality of life instrument used in AA. Three AA-specific (Alopecia Areata Symptom Impact Scale, Alopecia Areata Quality of Life Index and Alopecia Areata Patients' Quality of Life) and three hair disease-specific instruments (Hairdex, Scalpdex and ‘hair-specific Skindex-29’) were identified with a range of content and validation characteristics: there is little evidence yet of the actual use of these measures in AA. Scalpdex is the best-validated hair disease-specific instrument. Further extensive validation is needed for all of the AA-specific instruments. The European Academy of Dermatology and Venereology Task Force on Quality of Life and Patient Oriented Outcomes recommends the use of the dermatology-specific DLQI questionnaire, hair disease-specific Scalpdex and the alopecia areata-specific instruments the Alopecia Areata Symptom Impact Scale or Alopecia Areata Quality of Life Index, despite the limited experience of their use. We hope that new treatment methods will be able to improve both clinical signs and health-related quality of life in patients with AA. In order to assess the outcomes of trials on these new treatment methods, it would be helpful when further development and validation of AA-specific instruments is being encouraged and also conducted.

Published
2021

41. Pruritus Intensity Scales across Europe: a prospective validation study

Author

Storck, M., Sandmann, S., Bruland, P., Pereira, M. P., Steinke, S., Riepe, C., Soto-Rey, I., Garcovich, Simone, Augustin, M., Blome, C., Bobko, S., Legat, F. J., Potekaev, N., Lvov, A., Misery, L., Weger, W., Reich, A., Savk, E., Streit, M., Serra-Baldrich, E., Szepietowski, J. C., Dugas, M., Stander, S., Zeidler, C., Garcovich S. (ORCID:0000-0001-8967-6688), Storck, M., Sandmann, S., Bruland, P., Pereira, M. P., Steinke, S., Riepe, C., Soto-Rey, I., Garcovich, Simone, Augustin, M., Blome, C., Bobko, S., Legat, F. J., Potekaev, N., Lvov, A., Misery, L., Weger, W., Reich, A., Savk, E., Streit, M., Serra-Baldrich, E., Szepietowski, J. C., Dugas, M., Stander, S., Zeidler, C., and Garcovich S. (ORCID:0000-0001-8967-6688)

Abstract

Background: Chronic pruritus (CP) is a subjective symptom, and it is necessary to assess its intensity with validated patient-reported outcome tools in order to allow determination of the treatment course. Objectives: So far, the itch intensity scales were validated in small cohorts and in single languages. Here, we report the validation of the numerical rating scale, the verbal rating scale and the visual analogue scale for the worst and average pruritus intensity in the last 24h in several languages across Europe and across different pruritic dermatoses. Methods: After professional translation, the intensity scales were digitized for use as a tablet computer application. Validation was performed in clinics for Dermatology in Austria, France, Germany, Italy, Poland, Russia, Spain, Switzerland and Turkey. Results: A total of 547 patients with contact dermatitis, chronic nodular prurigo, psoriasis vulgaris, lichen planus or cutaneous T-cell lymphoma were included. The intensity scales showed a high level of reproducibility and inter-correlations with each other. The correlation with the Dermatology Life Quality Index was weak to strong in nearly all countries and dermatoses with the exception of France and patients with chronic nodular prurigo, for which no statistically significant correlations were found. Conclusions: The numerical rating scale, the verbal rating scale und the visual analogue scales are valid instruments with good reproducibility and internal consistency in German (Germany, Austria, Switzerland), French, Italian, Polish, Russian, Spanish and Turkish for different pruritic dermatoses. VAS worst was the best reproducible and consistent measuring instrument in all countries.

Published
2021

45. Bestimmung der transnationalen gesundheitsbezogenen Lebensqualität: Die kulturübergreifende Validität des überarbeiteten Wound-QoL-Fragebogens

Author

von Stülpnagel, C, Da Silva, N, Augustin, M, van Montfrans, C, Fife, C, Fagerdahl, AM, Gamus, A, Conde Montero, E, Klein, TM, Blome, C, and Sommer, R

Subjects
ddc: 610, 610 Medical sciences, Medicine
Abstract

Hintergrund und Stand (inter)nationaler Forschung: Chronische Wunden führen zu erheblichen Beeinträchtigungen im Leben und Wohlbefinden von Betroffenen durch starke Einschränkungen in allen Bereichen der gesundheitsbezogenen Lebensqualität. Die Prävalenz wird in Deutschland [zum vollständigen Text gelangen Sie über die oben angegebene URL], 19. Deutscher Kongress für Versorgungsforschung (DKVF)

Published
2020
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46. Validation of the Spanish Wound-QoL Questionnaire

Author

Conde Montero E, Sommer R, Augustin M, Blome C, Cabeza Martínez R, Horcajada Reales C, Alsina Gibert M, Ramón Sapena R, Peral Vázquez A, Montoro López J, Guisado Muñoz S, Pérez Jerónimo L, de la Cueva Dobao P, Kressel N, and Mohr N

Subjects
Quality of life, Health care research, Herida crónica, Histology, Calidad de vida, Cuidado de la herida, Patient-centred care, Cuidado centrado en el paciente, Dermatology, Carga para el paciente, Wound care, humanities, Pathology and Forensic Medicine, Spain, Investigación sanitaria, Surveys and Questionnaires, Patient burden, Quality of Life, Humans, Female, Translations, Chronic wound, Factor Analysis, Statistical, Aged
Abstract

BACKGROUND AND AIMS: The Wound-QoL is a validated and feasible questionnaire for measuring disease-specific health-related quality of life in chronic wounds, originally developed for use in German. The objective of this study was to translate the Wound-QoL for use in clinical care and in clinical trials in Spain and to validate this version. MATERIALS AND METHODS: Two independent fourth- and back translations of the Wound-QoL from the original German version were conducted, followed by an expert consensus of the resulting versions. After refinement, the final tool was piloted in N=10 patients and then used in the validation study. RESULTS: A total of 115 patients were recruited. Mean age was 69.5 (SD 14.5) years, 60.0% were female. The Spanish version of Wound-QoL showed high internal consistency (Cronbach's alpha>0.8 in all scales). Factor analysis resulted in the same scales as the original version. There were satisfactory distribution characteristics of the global score and the subscales. Construct validity and convergent validity with other outcomes (generic QoL, healing rate) were satisfactory. The vast majority of patients considered the Wound-QoL a simple and feasible tool. Mean time needed for completing the questionnaire was 5minutes. Overall, 99.1% of the participants found it easy to understand the questions and 94.7% stated that the questionnaire suits the personal situation. CONCLUSIONS: The Spanish version of the Wound-QoL shows good validity in clinical practice. It can be recommended for use in clinical routine and trials.

Published
2020

47. A translation and preliminary validation of the Dutch Wound-QoL questionnaire

Author

Amesz, S.F. (Stella F.), Klein, T.M. (Toni M.), Meulendijks, A.M. (Audrey M.), Nguyen, T.-V. (Tuong-Vi), Blome, C. (Christine), Roodbol, P.F. (Petrie F.), Van Montfrans, C., Amesz, S.F. (Stella F.), Klein, T.M. (Toni M.), Meulendijks, A.M. (Audrey M.), Nguyen, T.-V. (Tuong-Vi), Blome, C. (Christine), Roodbol, P.F. (Petrie F.), and Van Montfrans, C.

Abstract

BACKGROUND: Chronic wounds have a major impact on patients' health-related quality of life (HRQoL). Therefore, measuring HRQoL is an indispensable part of the treatment of patients with chronic wounds. The aim of this study was to translate and validate the Wound-QoL, a wound-specific HRQoL questionnaire, in a Dutch population. METHODS: The Wound-QoL was tran

Published
2020
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50. Measuring the importance of health domains in psoriasis – discrete choice experiment versus rating scales

Author

Gutknecht M, Schaarschmidt ML, Danner M, Blome C, and Augustin M

Subjects
lcsh:R5-920, patient-reported outcomes, discrete choice experiment, conjoint analysis, psoriasis, lcsh:Medicine (General), preferences
Abstract

Mandy Gutknecht,1 Marthe-Lisa Schaarschmidt,1,2 Marion Danner,3 Christine Blome,1 Matthias Augustin1 1German Center for Health Services Research in Dermatology (CVderm), Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, Germany; 2Department of Dermatology, University Medical Center Mannheim, Heidelberg University, Mannheim, Germany; 3Institute for Health Economics and Clinical Epidemiology (IGKE), University Hospital of Cologne, Cologne, Germany Background: Psoriasis affects different aspects of health-related quality of life (eg, physical, psychological, and social impairments); these health domains can be of different importance for patients. The importance of domains can be measured with the Patient Benefit Index (PBI). This questionnaire weights the achievement of treatment goals by Likert scales (0, “not important at all” to 4, “very important”) using the Patient Needs Questionnaire (PNQ). Treatment goals assessed with the PBI have been assigned to five health domains; the importance of each domain can be calculated as the average importance of the respective treatment goals. In this study, the PBI approach of deriving importance weights is contrasted to a discrete choice experiment (DCE), in order to determine the importance of health domains in psoriasis, and to find if the resulting weights will differ when derived from these two methods.Methods: Adult patients with psoriasis completed both questionnaires (PNQ, DCE). The PBI domains were used as attributes in the DCE with the levels “did not help at all”, “helped moderately”, and “helped a lot”.Results: Using DCE, “improving physical functioning” was the most important health domain, followed by “improving psychological well-being”. Using PNQ, these domains were ranked in position two and three following “strengthening confidence in the therapy and in a possible healing”. The latter was least important using DCE. The only agreement of ranking was shown in “reducing impairments due to therapy” (position four). “Improving social functioning” was ranked in position three (DCE) and five (PNQ).Conclusion: Health domains have different importance to patients with psoriasis. Using PNQ or DCE to determine the importance of domains results in markedly different rankings; both approaches can thus not be considered equivalent. However, in this study, importance was assessed at the domain level in DCE and at the single item level in PNQ, which may have added to the differences. Keywords: conjoint analysis, Patient Benefit Index, patient-reported outcomes, preferences

Published
2018

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