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User:JamesOAdams/Galen Research

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Galen Research Ltd.
Company typePrivate
IndustryQuality of Life (Medical) Research
Founded1988 (1988)
HeadquartersManchester Science Park Ltd, Manchester, United Kingdom.
Area served
Worldwide
Key people
Prof. Stephen McKenna PhD, AFBPsS, C.Psychol(Founder & CEO)
Jeanette Wilburn MSc
(Senior Research Associate)
James Twiss BSc
(Senior Research Associate)
ProductsSee list
Number of employees
13 (2013)
WebsiteGalen-Research.com
Footnotes / references
Employee and product data as of 2013

Galen Research was established in 1989 as an independent research company which specializes in developing disease specific patient-reported outcome (PRO) questionnaires. The aim of Galen Research is to “improve the science of health measurement”[1].

Since its formation in 1989, Galen has developed PRO measures which cover a range of diseases. These questionnaires include the Nottingham Health Profile (NHP)[2], the Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR)[3] and the Rheumatoid Arthritis Quality of Life Questionnaire (RAQoL)[4], among others[5][6]. These measures have been used in research studies worldwide to determine the effect a given disease has on a patient’s life.

The company is also involved in translation of PRO measures into other languages, writing academic manuscripts, conducting burden of illness studies, the application of Rasch analysis, literature reviews and evaluation of PROs, PRO use training and assistance on clinical trials[7].


Methodology

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According to Galen Research[8], the development of a new PRO measure involves four stages:

  • Qualitative interviews: Interviews are conducted with a number of patients with a varied representation of age, gender and disease severity. Statements are identified from these interviews which relate to the impact the condition has had on the patients’ lives. These statements are used to create a draft of the measure.
  • Cognitive debriefing: The draft is tested with a new patient sample to confirm the face and content validity, relevance and comprehensiveness.
  • Validation survey: The measure is tested with a validation survey with up to 200 patients, twice in a two week interval. This is used to create the final measure.
  • Data analysis: The psychometric properties of the measure are assessed for test-retest reliability, internal consistency and construct validity. Analyses are performed using Item Response Theory (Rasch) analyses to ensure good scaling properties such as item fit, local item dependence, item-stability and differential item functioning according to age and gender. If the data in the scale corresponds with the Rasch model, the scale is accepted as unidimensional. This means that item scores can be added to give a total score and statistical tests can be applied to trial data.

Philosophy

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There are two main schools of thought concerned with assessing quality of life: the health-related quality of life (HRQoL) school and the needs-based quality of life school (NBQoL). HRQoL is interested in assessing the burden a disease has on a patient’s well being over a period of time, which means that it is focused solely on a patient’s health[9] . NBQoL takes the view that quality of life is determined by a patient’s ability to satisfy their needs, and therefore focuses on the disease’s impact on a patient’s ability to meet those needs[10].

Galen Research utilizes the needs based quality of life model in order to focus more on the patient’s viewpoint of their medical condition and the treatment that they are receiving[11]. Galen measures are patient-based with all items derived from unstructured interviews with patients and do not list typical symptoms or problems associated with the disease in question[12]. This is regarded as the most effective approach by Galen Research because it focuses on the patient’s perception and takes into account that other factors may be affected by health and influence quality of life[13].

Patient-Reported Outcome (PRO) Measures

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Galen Research has developed 31 PRO measures[14]. These measures are:

Common Name Full Name Of Measure Related Condition Year Developed
NHP Nottingham Health Profile[15] General Disease 1980
POW-A Post-Operative Well-Being – Abdominal Post Operative Recovery 1992
RGHQoL Recurrent Genital Herpes Quality of Life[16] Genital Herpes 1993
FDM Family Disruption Measure-Chickenpox[17] Chicken Pox 1994
WISP Well-Being in Surgical Patients[18] Surgery Recovery 1995
RAQoL Rheumatoid Arthritis Quality of Life Questionnaire[19] Rheumatoid Arthritis 1996
ACQLI Quality of Life of Carers of Alzheimer’s Disease Patients[20] Alzheimer's Disease 1997
ASQoL Ankylosing Spondylitis Quality of Life Measure[21] Ankylosing Spondylitis 1998
IQoLI Incontinence Quality of Life Index Incontinence 1999
QoL-AGHDA Quality of Life Assessment of Growth Hormone Deficiency in Adults[22] Growth Hormone Deficiency 1999
UGAQoL Urogenital Atrophy Quality of Life[23] Urogenital Atrophy 1999
DFUQoL Diabetic Foot Ulcer Quality of Life[24] Diabetic Foot Ulcer 1999
VLUQoL Venous Leg Ulcer Quality of Life[25] Venous Leg Ulcer 1999
PIQoL-AD Parents’ Index of Quality of Life in Atopic Dermatitis[26] Atopic Dermatitis 2000
QoLIAD Quality of Life Index for Atopic Dermatitis[27] Atopic Dermatitis 2000
PSORIQoL Psoriasis Index of Quality of Life[28] Psoriasis 2001
QLDS Quality of Life in Depression Scale[29] Depression 2002
HOIQ Herpes Outbreak Impact Questionnaire[30] Herpes 2003
MSQoL Migraine-Specific Quality of Life measure[31] Migraine 2004
CAMPHOR Cambridge Pulmonary Hypertension Outcome Review[32] Pulmonary Hypertension 2004
OAQoL Osteoarthritis Quality of Life Measure[33] Osteoarthritis 2006
PRIMUS Patient Reported Outcome Indices for Multiple Sclerosis[34] Multiple Sclerosis 2007
U-FIS Unidimensional Fatigue Impact Scale[35] Fatigue 2007
ALIS Asthma Life Impact Scale[36] Asthma 2007
LCOPD Living with Chronic Obstructive Pulmonary Disease[37] Chronic Obstructive Pulmonary Disease 2007
PsAQoL Psoriatic Arthritis Quality of Life measure[38] Psoriatic Arthritis 2007
LQoL (formerly SLEQoL) Systemic Lupus Erythematosus Quality of Life[39] Systemic Lupus Erythematosus 2007
PRISM Patient-Reported Impact of Scars Measure[40] Scars 2008
BOCLIR Bowel Cleansing Impact Review [41] Bowel Cleansing 2008
HSC Herpes Symptom Checklist[42] Herpes 2008
CLIQ Crohn's Life Impact Questionnaire[43] Crohn's Disease 2013

There are currently three measures in development, as of 2013. They are focused on the following medical conditions:

Headquarters

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Galen Research is situated in the Manchester Science Park, directly across from the University of Manchester.

See Also

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References

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  1. ^ Galen Research Ltd. "Our Aims". Retrieved 05/09/2013. {{cite web}}: Check date values in: |accessdate= (help)
  2. ^ "BioPsychoSocial Assessment Tools for the Elderly - Assessment Summary Sheet". BioPsychoSocial Assessments in Aging. University of Western Ontario. Retrieved 24 September 2013. {{cite web}}: |first= missing |last= (help)
  3. ^ McKenna, Stephen P.; Ratcliffe, Julie; Meads, David M.; Brazier, John E. (2008). "Development and validation of a preference based measure derived from the Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) for use in cost utility analyses". Health and Quality of Life Outcomes. 6 (65): 1–8. doi:10.1186/1477-7525-6-65. PMID 18718016.{{cite journal}}: CS1 maint: date and year (link) CS1 maint: unflagged free DOI (link)
  4. ^ "Rheumatoid Arthritis Quality of Life (RAQoL)". APN Data Collection Toolkit. McMaster University. Retrieved 24 September 2013. {{cite web}}: |first= missing |last= (help)
  5. ^ Vikki Wilkinson. "Scales". University of Leeds. Retrieved 05/09/2013. {{cite web}}: Check date values in: |accessdate= (help)
  6. ^ Doward, Lynda C.; McKenna, Stephen P.; Meads, David M. (13/09/2004). "Effectiveness of Needs-Based Quality of Life Instruments". Value in Health. 7 (Suppl. s1): S35–S38. doi:10.1111/j.1524-4733.2004.7s109.x. PMID 15367243. {{cite journal}}: Check date values in: |date= (help); Unknown parameter |month= ignored (help)CS1 maint: date and year (link)
  7. ^ "What We Do". Galen-Research.com. Galen Research. Retrieved 25 September 2013. {{cite web}}: |first= missing |last= (help)
  8. ^ McKenna, Stephen P.; Doward, Lynda C.; Niero, Mauro; Erdman, Rudolph (13/09/2004). "Development of Needs-Based Quality of Life Instruments". Value in Health. 7 (Suppl. s1): S17–S21. doi:10.1111/j.1524-4733.2004.7s105.x. PMID 15367239. {{cite journal}}: Check date values in: |date= (help); Unknown parameter |month= ignored (help)CS1 maint: date and year (link)
  9. ^ Doward, Lynda C.; McKenna, Stephen P. (09/2004). "Defining patient-reported outcomes". Value in Health. 7 (Suppl. 1): S4–S8. doi:10.1111/j.1524-4733.2004.7s102.x. PMID 15367236. {{cite journal}}: Check date values in: |date= (help)
  10. ^ McKenna, Stephen P.; Doward, Lynda C. (13/09/2004). "The Needs-Based Approach to Quality of Life Assessment". Value in Health. 7 (Suppl. S1): S1–S3. doi:10.1111/j.1524-4733.2004.7s101.x. PMID 15367235. {{cite journal}}: Check date values in: |date= (help)
  11. ^ "What We Do". GalenResearch.com. Retrieved 24 September 2013. {{cite web}}: |first= missing |last= (help)
  12. ^ McKenna, Stephen P.; Doward, Lynda C.; Niero, Mauro; Erdman, Rudolph (13/09/2004). "Development of Needs-Based Quality of Life Instruments". Value in Health. 7 (Suppl. 1): S17–S21. doi:10.1111/j.1524-4733.2004.7s105.x. PMID 15367239. {{cite journal}}: Check date values in: |date= (help)
  13. ^ Doward, Lynda C.; McKenna, Stephen P.; Meads, David M. (09/2004). "Effectiveness of needs-based quality of life instruments". Value in Health. 7 (Suppl 1): S35–S38. doi:10.1111/j.1524-4733.2004.7s109.x. PMID 15367243. {{cite journal}}: Check date values in: |date= (help)
  14. ^ Galen Research Ltd. "Measures Database". Retrieved 05/09/2013. {{cite web}}: Check date values in: |accessdate= (help)
  15. ^ Hunt, S. M.; McKenna, S. P.; McEwen, J.; Backett, E. M.; Williams, J.; Papp, E. (1980). "A quantitative approach to perceived health status: a validation study". Journal of Epidemiology and Community Health. 34 (4): 281–286. doi:10.1136/jech.34.4.281. PMC 1052092. PMID 7241028. Retrieved 17 September 2013.{{cite journal}}: CS1 maint: date and year (link)
  16. ^ Doward, L.C. (02/1998). "The international development of the RGHQoL: a quality of life measure for recurrent genital herpes". Quality of Life Research. 7 (2): 143–153. doi:10.1023/A:1008857426633. PMID 9523496. {{cite journal}}: Check date values in: |date= (help); Unknown parameter |coauthors= ignored (|author= suggested) (help)
  17. ^ McKenna, S.P. (03/1994). "A measure of family disruption for use in chickenpox and other childhood illnesses". Social Science & Medicine. 38 (5): 725–731. doi:10.1016/0277-9536(94)90463-4. PMID 8171351. {{cite journal}}: Check date values in: |date= (help); Unknown parameter |coauthors= ignored (|author= suggested) (help)
  18. ^ McKenna, S. P.; Doward, L. C.; Whalley, D. (1998). "The development and testing of the well-being index for surgical patients (WISP)". Quality of Life Research. 7 (2): 167–173. doi:10.1023/A:1008861627541. JSTOR 4035326. PMID 9523498.
  19. ^ De Jong, Z.; Van Der Heijde, D.; McKenna, S. P.; Whalley, D. (1997). "The reliability and construct validity of the RAQoL: a rheumatoid arthritis-specific quality of life instrument". Rheumatology. 36 (8): 878–883. doi:10.1093/rheumatology/36.8.878. PMID 9291857.
  20. ^ Doward, L.C. (11/1997). "THE DEVELOPMENT OF THE ALZHEIMER'S CARERS' QUALITY OF LIFE INSTRUMENT". 4th Annual Conference of the International Society for Quality of Life Research. Vienna, Austria: Quality of Life Research. p. 639. doi:10.1023/A:1018424519364. {{cite conference}}: Check date values in: |date= (help)
  21. ^ Doward, L. C.; Spoorenberg, A.; Cook, S. A.; Whalley, D.; Helliwell, P. S.; Kay, L. J.; McKenna, S. P.; Tennant, A.; Van Der Heijde, D.; Chamberlain, M. A. (2003). "Development of the ASQoL: a quality of life instrument specific to ankylosing spondylitis". Annals of the Rheumatic Diseases. 62 (1): 20–26. doi:10.1136/ard.62.1.20. PMC 1754293. PMID 12480664.{{cite journal}}: CS1 maint: date and year (link)
  22. ^ McKenna, S.P. (06/1999). "The QoL-AGHDA: An instrument for the assessment of quality of life in adults with growth hormone deficiency". Quality of Life Research. 8 (4): 373–383. doi:10.1023/A:1008987922774. PMID 10472170. {{cite journal}}: Check date values in: |date= (help); Unknown parameter |coauthors= ignored (|author= suggested) (help)
  23. ^ McKenna, Stephen P.; Whalley, Diane; Renck-Hooper, Ulla; Carlin, Sonja; Doward, Lynda C. (01/08/1999). "The development of a quality of life instrument for use with post-menopausal women with urogenital atrophy in the UK and Sweden". Quality of Life Research. 8 (5): 393–398. doi:10.1023/A:1008884703919. PMID 10474280. {{cite journal}}: Check date values in: |date= (help)
  24. ^ McKenna, S.P. (02/2001). "Diabetic foot ulcers: a patients' perspective" (PDF). Proceedings of the British Psychological Society. 9 (1): 70. {{cite journal}}: Check date values in: |date= (help); Unknown parameter |coauthors= ignored (|author= suggested) (help)
  25. ^ Cook, S.A. (02/2001). "Venous leg ulcers – patient reported impact on quality of life" (PDF). Proceedings of the British Psychological Society. 9 (1): 64. {{cite journal}}: Check date values in: |date= (help); Unknown parameter |coauthors= ignored (|author= suggested) (help)
  26. ^ McKenna, Stephen P.; Whalley, Diane; Dewar, Abigail L.; Erdman, Ruud A. M.; Kohlmann, Thomas; Niero, Mauro; Baró, Eva; Cook, Sharon A.; Crickx, Beatrice; Frech, Feride; Assche, Daniel van (/0102/2005). "International development of the Parents' Index of Quality of Life in Atopic Dermatitis (PIQoL-AD)". Quality of Life Research. 14 (1): 231–241. doi:10.1007/s11136-004-4231-z. PMID 15789957. {{cite journal}}: Check date values in: |date= (help)
  27. ^ Whalley, D.; McKenna, S.P.; Dewar, A.L.; Erdman, R.A.; Kohlmann, T.; Niero, M.; Cook, S.A.; Crickx, B.; Herdman, M.J.; Frech, F.; Van Assche, D. (19/02/2004). "A new instrument for assessing quality of life in atopic dermatitis: international development of the Quality of Life Index for Atopic Dermatitis (QoLIAD)". British Journal of Dermatology. 150 (2): 274–283. doi:10.1111/j.1365-2133.2004.05783.x. PMID 14996098. {{cite journal}}: Check date values in: |date= (help)
  28. ^ McKenna, S.P.; Cook, S.A.; Whalley, D.; Doward, L.C.; Richards, H.L.; Griffiths, C.E.M.; Van Assche, D. (22/08/2003). "Development of the PSORIQoL, a psoriasis-specific measure of quality of life designed for use in clinical practice and trials". British Journal of Dermatology. 149 (2): 323–331. doi:10.1046/j.1365-2133.2003.05492.x. PMID 12932239. {{cite journal}}: Check date values in: |date= (help)
  29. ^ McKenna, Stephen P.; Hunt, Sonja M. (09/1992). "A new measure of quality of life in depression: Testing the reliability and construct validity of the QLDS". Health Policy. 22 (3): 321–330. doi:10.1016/0168-8510(92)90005-V. PMID 10122731. {{cite journal}}: Check date values in: |date= (help)
  30. ^ Doward, Lynda C.; McKenna, Stephen P.; Meads, David M.; Kahler, Kristijan; Frech, Feride (18/07/2008). "The Development of the Herpes Symptom Checklist and the Herpes Outbreak Impact Questionnaire". Value in Health. 12 (1): 139–145. doi:10.1111/j.1524-4733.2008.00424.x. PMID 18647252. {{cite journal}}: Check date values in: |date= (help)
  31. ^ McKenna, Stephen P.; Doward, Lynda C.; Davey, Kate Mackenzie (05/1998). "The Development and Psychometric Properties of the MSQOL". Clinical Drug Investigation. 15 (5): 413–423. doi:10.2165/00044011-199815050-00006. PMID 18370497. {{cite journal}}: Check date values in: |date= (help)
  32. ^ McKenna, Stephen P.; Ratcliffe, Julie; Meads, David M.; Brazier, John E. (2008). "Development and validation of a preference based measure derived from the Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) for use in cost utility analyses". Health and Quality of Life Outcomes. 6 (65): 1–8. doi:10.1186/1477-7525-6-65. PMID 18718016.{{cite journal}}: CS1 maint: date and year (link) CS1 maint: unflagged free DOI (link)
  33. ^ Keenan, Anne-Maree; McKenna, Stephen P.; Doward, Lynda C.; Conaghan, Philip G.; Emery, Paul; Tennant, Alan (15/06/2008). "Development and validation of a needs-based quality of life instrument for osteoarthritis". Arthritis Care & Research. 59 (6): 841–848. doi:10.1002/art.23714. PMID 18512719. {{cite journal}}: Check date values in: |date= (help)
  34. ^ McKenna, Stephen P.; Doward, Lynda C.; Twiss, James; Hagell, Peter; Oprandi, Nadia C.; Fisk, John; Grand'Maison, François; Bhan, Virender; Arbizu, Txomin; Brassat, David; Kohlmann, Thomas; Meads, David M.; Eckert, Benjamin J. (23/07/2010). "International Development of the Patient-Reported Outcome Indices for Multiple Sclerosis (PRIMUS)". Value in Health. 13 (8): 946–951. doi:10.1111/j.1524-4733.2010.00767.x. PMID 20667058. {{cite journal}}: Check date values in: |date= (help)
  35. ^ Meads, DM; Doward, LC; McKenna, SP; Fisk, J.; Twiss, J.; Eckert, B. (10/2009). "The development and validation of the Unidimensional Fatigue Impact Scale (U-FIS)". Multiple Sclerosis. 15 (10): 1228–1238. doi:10.1177/1352458509106714. PMID 19556314. {{cite journal}}: Check date values in: |date= (help)
  36. ^ Meads, David M. (01/05/2010). "Development and validation of the Asthma Life Impact Scale (ALIS)". Respiratory Medicine. 104 (5): 633–643. doi:10.1016/j.rmed.2009.11.023. PMID 20053543. {{cite journal}}: Check date values in: |date= (help); Unknown parameter |coauthors= ignored (|author= suggested) (help)
  37. ^ McKenna, Stephen P.; Meads, David M.; Doward, Lynda C.; Twiss, James; Pokrzywinski, Robin; Revicki, Dennis; Hunter, Cameron J.; Glendenning, G. Alastair (09/2011). "Development and validation of the living with chronic obstructive pulmonary disease questionnaire". Quality of Life Research. 20 (7): 1043–1052. doi:10.1007/s11136-011-9850-6. PMID 21312065. {{cite journal}}: Check date values in: |date= (help)
  38. ^ McKenna, S. P. (2004). "Development of the PsAQoL: a quality of life instrument specific to psoriatic arthritis". Annals of the Rheumatic Diseases. 63 (2): 162–169. doi:10.1136/ard.2003.006296. PMID 14722205.{{cite journal}}: CS1 maint: date and year (link)
  39. ^ Doward, L. C.; McKenna, S. P.; Whalley, D.; Tennant, A.; Griffiths, B.; Emery, P.; Veale, D. J. (2009). "The development of the L-QoL: a quality-of-life instrument specific to systemic lupus erythematosus". Annals of the Rheumatic Diseases. 68 (196–200): 196–200. doi:10.1136/ard.2007.086009. PMID 18385276.{{cite journal}}: CS1 maint: date and year (link)
  40. ^ Brown, Benjamin C.; McKenna, Stephen P.; Solomon, Mattea; Wilburn, Jeanette; McGrouther, Duncan A.; Bayat, Ardeshir (05/2010). "The Patient-Reported Impact of Scars Measure: Development and Validation". Plastic & Reconstructive Surgery. 125 (5): 1439–1449. doi:10.1097/PRS.0b013e3181d4fd89. PMID 20440163. {{cite journal}}: Check date values in: |date= (help)
  41. ^ Doward, Lynda; Wilburn, Jeanette; McKenna, Stephen P.; Leicester, Roger; Epstein, Owen; Hedley, Vicki; Korala, Sanjeeva; Twiss, James; Jones, Deborah; Geraint, Mike (2013). "Development and validation of the Bowel Cleansing Impact Review (BOCLIR)". Frontline Gastroenterology. 4 (2): 112–119. doi:10.1136/flgastro-2012-100278. PMID 28839711.
  42. ^ Doward, Lynda, C. (01/01/2009). "The development of the Herpes Symptom Checklist and the Herpes Outbreak Impact Questionnaire". Value in Health. 12 (1): 139–145. doi:10.1111/j.1524-4733.2008.00424.x. PMID 18647252. {{cite journal}}: Check date values in: |date= (help); Unknown parameter |coauthors= ignored (|author= suggested) (help)CS1 maint: multiple names: authors list (link)
  43. ^ Wilburn, J.; McKenna, S. P.; Twiss, J.; Kemp, K.; Campbell, S. (2013). "PTU-080 Development and Validation of the Crohn'S Life Impact Questionnaire (Cliq)". Gut. 62 (Suppl. 1): A79.1–A79. doi:10.1136/gutjnl-2013-304907.172.


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