The Quality of Life Assessment of Growth Hormone Deficiency in Adults Measure

The Quality of Life Assessment of Growth Hormone Deficiency in Adults (QoL-AGHDA) is a disease specific patient-reported outcome measure which measures the effect growth hormone deficiency has on adult patients.[1] The score of the QoL-AGHDA is used to determine the extent to which growth hormone deficiency has affected the patient’s quality of life, and what treatment can then be administered. A high score on the QoL-AGHDA indicates that the patient suffers from many symptoms and therefore has a lower quality of life.[2]

The questionnaire consists of 25 “Yes” or “No” items and is self-administered, meaning that the patient can complete the survey on their own.[3] The QoL-AGHDA addresses seven different areas of concern for growth hormone deficient (GHD) patients. They are: body image and fat distribution, energy level, concentration and memory, irritability and temper, strength and stamina, coping with stress, and physical and mental drive.[2]

History and language adaptation

The QoL-AGHDA was published in 1999 and was funded by Pharmacia & Upjohn AB, Sweden.[4] The research company that developed the QoL-AGHDA was Galen Research.[5] The measure was originally created for use in UK English, Swedish, Italian, German and Spanish, but later on it was also adapted for the United States, Belgium, the Netherlands, Brazil and Denmark. Subsequent to that, the QoL-AGHDA was translated into Czech, Polish, Serbian and Slovakian.[6]

Clinical and scientific use

The QoL-AGHDA has been used in numerous clinical practice and research studies worldwide.[1][7][8][9][10] It is also utilized by the Pfizer International Metabolic Database (KIMS), which monitors treatment and growth hormone replacement therapy outcomes internationally.[11] Additionally, the questionnaire is used by the National Institute for Health and Care Excellence (NICE) in the UK. NICE has recommended that somatropin hormone treatment may be given to a patient only if they meet three criteria; they have a severe growth hormone deficiency, they are already receiving full replacement with other deficient pituitary hormones as they need it and they have a score of at least 11 on the QoL-AGHDA. It is also recommended that the patient’s quality of life is reassessed using the Qol-AGHDA nine months after starting therapy, and if their score is not improved by at least seven points the treatment must be discontinued.[12] This was the first time a quality of life measure was used to determine whether treatment should be given for a specific disease.[6]

References
  1. Wirén, L.; Whalley, D; McKenna, S; Wilhelmsen, L (2000). "Application of a disease-specific, quality-of-life measure (QoL-AGHDA) in growth hormone-deficient adults and a random population sample in Sweden: Validation of the measure by Rasch analysis". Clinical Endocrinology. 52 (2): 143–52. doi:10.1046/j.1365-2265.2000.00899.x. PMID 10671940.
  2. Hull, K.; Harvey, S (2003). "Growth hormone therapy and Quality of Life: Possibilities, pitfalls and mechanisms". Journal of Endocrinology. 179 (3): 311–33. doi:10.1677/joe.0.1790311. PMID 14656202.
  3. "QoL-AGHDA: Quality of Life: Assessment of GH Deficiency in Adults" (PDF). Pharmacia. 2000. Retrieved 27 September 2013.
  4. McKenna, Stephen P.; Doward, Lynda C.; Alonso, Jordi; Kohlmann, Thomas; Niero, Mauro; Prieto, Luis; Wíren, Lena (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): 373–83. doi:10.1023/A:1008987922774. PMID 10472170.
  5. "Measures Database". Galen-Research.com. Galen Research. Retrieved 27 September 2013.
  6. McKenna, Stephen P; Wilburn, Jeanette; Twiss, James; Crawford, Sigrid R; Hána, Václav; Karbownik-Lewinska, Malgorzata; Popovic, Vera; Pura, Mikulas; Koltowska-Häggström, Maria (2011). "Adaptation of the QoL-AGHDA scale for adults with growth hormone deficiency in four Slavic languages". Health and Quality of Life Outcomes. 9: 60. doi:10.1186/1477-7525-9-60. PMC 3199740. PMID 21810234.
  7. Moock, Joern; Friedrich, Nele; Völzke, Henry; Spielhagen, Christin; Nauck, Matthias; Koltowska-Häggström, Maria; Buchfelder, Michael; Wallaschofski, Henri; Kohlmann, Thomas (2011). "Prediction of improvement in quality of life (QoL-AGHDA) in adults with growth hormone deficiency by normative reference limits: Data of the German KIMS cohort". Growth Hormone & IGF Research. 21 (5): 272–8. doi:10.1016/j.ghir.2011.07.005. PMID 21865066.
  8. Gilet, Hélène; Chachuat, Anne; Viala-Danten, Muriel; Auzière, Sébastien; Koltowska-Häggström, Maria (2010). "Application of the Disease-Specific Quality of Life Assessment of Growth Hormone Deficiency in Adults (QoL-AGHDA) Questionnaire in a General Population: Results from a French Panel Study". Value in Health. 13 (4): 495–500. doi:10.1111/j.1524-4733.2009.00689.x. PMID 20102556.
  9. Badia, X.; Lucas, A.; Sanmartí, A.; Roset, M.; Ulied, A. (1998). "One-year follow-up of quality of life in adults with untreated growth hormone deficiency". Clinical Endocrinology. 49 (6): 765–71. doi:10.1046/j.1365-2265.1998.00634.x. PMID 10209564.
  10. Mukherjee, A.; Tolhurst-Cleaver, S; Ryder, WD; Smethurst, L; Shalet, SM (2004). "The Characteristics of Quality of Life Impairment in Adult Growth Hormone (GH)-Deficient Survivors of Cancer and Their Response to GH Replacement Therapy". Journal of Clinical Endocrinology & Metabolism. 90 (3): 1542–9. doi:10.1210/jc.2004-0832. PMID 15613427.
  11. Gutiérrez, Lia P.; Kołtowska-Häggström, Maria; Jönsson, Peter J.; Mattsson, Anders F.; Svensson, Dag; Westberg, Björn; Luger, Anton (2008). "Registries as a tool in evidence-based medicine: Example of KIMS (Pfizer International Metabolic Database)". Pharmacoepidemiology and Drug Safety. 17 (1): 90–102. doi:10.1002/pds.1510. PMID 17957812.
  12. "Evidence and interpretation". Human growth hormone (somatropin) in adults with growth hormone deficiency. National Institute for Health and Care Excellence. August 2003. p. 17. ISBN 978-1-84257-356-3. Retrieved 27 September 2013.


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