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Posted by on May 11, 2013 in The Symptoms |

Symptoms Severity Ranking

Symptoms Severity Ranking

 

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The Most Common Symptoms Ranked

In 2008, a study was published by a leading French mastocytosis research organisation, which ranked 38 most common mastocytosis symptoms by their impact on quality of life and disability.

Study Design and Objectives

A case-control study (Case-Control Cohort Study of Patients’ Perceptions of Disability in Mastocytosis) was initiated in September 2004 by AFIRMM to examine patients’ disability due to mastocytosis. The objectives of the cohort study were to:

  • evaluate the patients’ perception of disability,
  • establish and validate a composite score for disability,
  • determine the most important symptoms causing the patients’ perception of disability, and
  • correlate disability with mastocytosis classification and presence of the D816V KIT mutation and an elevated level of serum tryptase.

How The Study Was Structured

During visits by mastocytosis patients to French hospitals between 1999 and 2004, it was noticed that they tend to suffer from a very wide variety of common symptoms and that they often feel disabled by these symptoms.

To gain a clearer picture of overall disability in mastocytosis and the type and severity of symptoms causing disability, researchers developed two questionnaires. The first was a questionnaire asking the patients about their overall perception of disability, and the second was a questionnaire asking the patients about their perception of the severity of 38 symptoms in 12 categories (skin, allergy/flush/shock, gastrointestinal tract, rheumatology, asthenia, neurology/psychiatry, respiratory, urology, infection, hemorrhoidal inflammation, libido, and sweat).

In September 2004, the questionnaires were sent to 703 adult mastocytosis patients. Responses to both questionnaires were obtained from 363 patients. The 363 patients included individuals with CM and both indolent and aggressive forms of SM, but none of the patients had mast cell leukemia

In addition, the questionnaires were administered to 90 control healthy subjects with no family members suffering from mastocytosis.

Study Conclusions

The mean scores and the standard measures of disability indicated that most mastocytosis patients suffer from disabilities due to the disease. Surprisingly, the patient’s measurable and perceived disabilities did not differ according to WHO disease classification or presence or absence of
the D816V KIT mutation or an elevated serum tryptase level. Also, 32 of the 38 symptoms were more common in patients than controls.

The conclusion reached was that mastocytosis patients suffer from more symptoms and greater disability than previously thought, that mastocytosis may therefore be under-diagnosed, and that the symptoms of the indolent forms of mastocytosis might be due more to systemic release of mediators than mast cell burden.

Patients feel disabled by their symptoms regardless of whether they have CM or SM, The overall extent of disability does not differ significantly between these two main types of mastocytosis, and the overall disability is unrelated to the presence of the presence of the D816V mutation or an elevated serum tryptase level.

Symptoms Severity Ranking
Symptom Rank Controls Patients
Number Experience
Any
Disability
Severe or
Intolerable
Disability
Number Experience
Any
Disability
Severe or
Intolerable
Disability
Psychological Impact 1 90 9 (10%) 1 (1%) 363 261 (72%) 120 (33%)
Asthenia 2 90 34 (38%) 3 (3%) 362 296 (82%) 102 (28%)
Pruritus 3 90 25 (28%) 3 (3%) 363 299 (82%) 82 (23%)
Food allergy-intolerance 4 90 9 (10%) 0(0%) 363 222 (61%) 97 (27%)
Erythemateous crisis 5 90 17 (19%) 1 (1%) 363 293 (81%) 69 (19%)
Muscle and joint pain, cramps 6 90 36 (40%) 3 (3%) 363 276 (76%) 71 (20%)
Pollakiuria 7 90 58 (64%) 6 (7%) 362 263 (73%) 64 (18%)
Drug allergy 8 90 16 (18%) 0 (0%) 363 205 (56%) 70 (19%)
Aerophagia/eructation 9 90 43 (48%) 1 (1%) 363 229 (63%) 62 (17%)
Dyspnea-bronchoreactivity 10 90 15 (17%) 3 (3%) 362 154 (43%) 94 (26%)
Headache 11 90 34 (38%) 4 (4%) 362 250 (69%) 48 (13%)
Bone pain 12 90 16 (18%) 0 (0%) 363 196 (54%) 65 (18%)
Reduced sexual relations 13 90 11 (12%) 4 (4%) 362 132 (36%) 65 (18%)
Epigastric pain 14 90 35 (39%) 2 (2%) 362 249 (69%) 40 (11%)
Ocular discomfort 15 90 43 (48%) 1 (1%) 363 219 (60%) 55 (15%)
Memory loss 16 90 32 (36%) 0 (0%) 362 240 (66%) 34 (9%)
Tinnitus 17 90 29(32%) 1 (1%) 363 166 (46%) 47 (13%)
Pseudo-occlusive syndrome 18 90 20 (22%) 0 (0%) 363 199 (55%) 36 (10%)
Infections (bronchitis, rhinitis) 19 90 25 (28%) 2 (2%) 363 182 (50%) 38 (10%)
Olfactive intolerance 20 90 33 (37%) 1 (1%) 363 188 (52%) 39 (11%)
Social Interaction 21 90 9 (10%) 0 (0%) 362 200 (55%) 26 (7%)
Depression 22 90 19 (21%) 0 (0%) 362 205 (57%) 22 (6%)
Mobility 23 90 6 (7%) 0 (0%) 363 153 (42%) 35 (10%)
Anaphylactic shock 24 90 12 (13%) 0 (0%) 363 160 (44%) 30 (8%)
Sweating 25 90 19 (21%) 2 (2%) 363 169 (47%) 30 (8%)
Stomatitis 26 90 28 (31%) 1 (1%) 363 145 (40%) 34 (9%)
Flush 27 90 9 (10%) 0 (0%) 363 190 (52%) 23 (6%)
Performance Status 28 90 11 (12%) 1 (1%) 362 187 (52%) 25 (7%)
Hemorrhoids 29 90 19 (21%) 1 (1%) 363 156 (43%) 23 (6%)
Cough 30 90 22 (24%) 0 (0%) 362 171 (47%) 9 (2%)
Ear/nose/throat inflammation 31 90 13 (14%) 0 (0%) 362 120 (33%) 20 (6%)
Erectile function/ability to make love 32 90 10 (11%) 2 (2%) 362 71 (20%) 34 (9%)
Nausea, vomiting 33 90 20 (22%) 0 (0%) 363 179 (49%) 12 (3%)
Diarrhea 34 90 6 (7%) 0 (0%) 363 127 (35%) 10 (3%)
Warts 35 90 14 (16%) 1 (1%) 363 82 (23%) 10 (3%)
Pain 36 90 4 (4%) 0 (0%) 362 71 (20%) 7 (2%)
Folliculitis 37 90 7 (8%) 1 (1%) 362 56 (15%) 6 (2%)
Dysuria 38 90 6 (7%) 0 (0%) 362 51 (14%) 3 (1%)

 
You can download the AFIRMM study from the link below:

DownloadDownload PDF 212K Case-Control Cohort Study of Patients’ Perceptions of Disability in Mastocytosis