Data and graphs can be found under each monthly post summary under the Home menu.
Raw data is stored as CSV files, output initial to graphs using google fusion.
The following information outlines the parameters for each data resource.
Three basic forms of are collected:
Affective (which are numbered) which indicate things such as mood, wellbeing etc.
Medical indicated by preceding letter (e.g. a, b,).
Economic costs of treatment include drug costs (but not testing or consultancy) and Drug costs as costed by the NHS using the NHS Electronic tariff and the NICE database:
The following give the rationale for scoring and explanations of values.
1. //Mood Indicator, data type subjective, scored 1-10// Scoring derived from WHO-Five Well-being Index (WHO-Five) http://www.gp-training.net/protocol/psychiatry/who/whodep.htm Key: Blissful≈ 10 Very happy ≈ 9 cheerful and in good spirits ≈ 8 reasonable spirits ≈ 7 felt calm ≈ 6 felt subdued 5 low spirits ≈ 4 sad/tearful ≈ 3 very low ≈ 2 life isn't worth living ≈ 1 Daily scores stored in CSV file 2. //Control index scored 1-10// This is derived from the Third National Scottish Survey of Public Atitudes to Mental Health Mental Wellbeing and Mental Health Problems. Key: Complete controll = 9-10 A good deal of controll = 7-8 Some controll = 5-6 A little controll= 3-4 No control at all = 1-2 Daily scores stored in CSV file 3.//Physical discomfort index// Based upon the US Army Numeric pain rating scale Key: 0= none, 2= mild, 4 = moderate, 8= severe, 10 = worst possible 4.// Stoicism index daily data Key: Illness what illness: 9-10 I feel fine: 7-8 Grin and bare it 5 - 6 Stiff upper lip: 4 Wobbly lip: 2-3 I don't want to talk about it: 1 5.// Hat Index Key Daily hat tracking data: "blue beat-mod","pork pie","bucket Hat","beenie black", beenie brown","beenie pattern","beenie grey", ""trapper","flat cap","blue peak cap", "no hat", a) // Full Blood count// Measures presence or severity of anaemia, assesses for low white cell count, assesses for low blood platelet count. Side effects of myeloma (and its treatment) can often cause anaemia (low red cells) increased risk of infection (low white cells) and unexplained bruising (low platelets) Key: Paraprotein normal range: 0 Abnormal protein produced by Myeloma Albumin (g /L), normal range: 35 - 50 Often lowered in myeloma Kappa (k) light chain normal range: 3.3 - 19.4 part of an immunoglobulin (antibody) Lambda Light Chain normal range: 5.71 - 26.3 often raised with an abnormal ration in myeloma b) //Proteins// Special protein testing: serum protein electrophoresis (SPEP), Immunofixation, Freelight test to: Show presence of monoclonal myeloma protein (paraprotein) Measure Albumin (a normal protein produced in the liver) Determine the type of myeloma protein, i.e. heavy chain (G,A,D or M), Light Chain, Kappa (K), Lambda (l). Measure the amount of free Kappa or Lambda if no paraprotein present. Key: Paraprotein normal range: 0 Abnormal protein produced by Myeloma Albumin (g /L), normal range: 35 - 50 Often lowered in myeloma Kappa (k) light chain normal range: 3.3 - 19.4 part of an immunoglobulin (antibody) Lambda Light Chain normal range: 5.71 - 26.3 often raised with an abnormal ration in myeloma c) //Urea, Electrolytes and Creatinine// Assesses kidney function and calcium level Key: Urea (mmol / L) normal range: 2.5 - 6.7 Measures kidney function Creatinine normal range: 70 - 150 Measures kidney function Calcium (total) (mm0l /L) 2.1 - 2.6 Raised by Myeloma bone disease