Quality of Life and Disease-related Symptoms in Individuals With Systemic Mastocytosis

Primary outcomes

1. EORTC QLQ C-30

   Time frame: Day 1

   EORTC QLQ C-30 measures health related quality of life rated by individuals with malignancies and the general population. All of the scales and single-item measures range in score from 0 to 100. A high scale score represents a higher response level. Thus, a high score for a functional scale represents a high / healthy level of functioning, a high score for the global health status / QoL represents a high QoL, but a high score for a symptom scale / item represents a high level of symptomatology / problems

2. The Mastocytosis Quality of Life Questionnaire (MC-QoL)

   Time frame: Day 1

   The Mastocytosis Quality of Life Questionnaire (MC-QoL), measures disease-specific quality of life items, has scores from 0 to 100, where higher scores indicate higher health-related quality-of-life impairment

3. The Hospital Anxiety and Depression Scale (HADS)

   Time frame: Day 1

   The Hospital Anxiety and Depression Scale (HADS), 14 items, is a screening tool for anxiety and depression in non-psychiatric clinical populations. There are 7 items for depression and 7 items for anxiety. Each item on the questionnaire is scored from 0-3 and this means that a person can score between 0 and 21 for either anxiety or depression. A higher score indicates a higher level of distress.

4. The Gastrointestinal Symptom Rating Scale (GSRS)

   Time frame: Day 1

   The Gastrointestinal Symptom Rating Scale (GSRS), 15 items. This instrument measures The Gastrointestinal Symptom Rating Scale (GSRS). This instrument measures gastrointestinal symptoms in individuals with irritable bowel syndrome, gastric or duodenal ulcers and dyspepsia. The questionnaire, which contains 15 items, 6 subscales with total score between 19 to 133. Higher scores indicates more symptoms.

5. The Visceral Sensitivity Index (VSI)

   Time frame: Day 1

   The Visceral Sensitivity Index (VSI), 15 items, measures psychosocial consequences and worries of gastrointestinal symptoms. Each item scores 0-6 and a higher score indicates greater GI symptom-specific anxiety.

6. The Brief Pain Inventory - Short form (BPI-SF)

   Time frame: day 1

   The Brief Pain Inventory - Short form (BPI-SF), 9 items, yields a rating of levels of pain during a 24-hour period, and a description of the nature of that pain. The instrument also contains items on the impact (if any) of the pain of daily life. Each rating scale is bounded by the words "no pain" at the 0 end and "pain as bad as you can imagine" at the other. Using similar scales of 0 to 10, patients are also asked to rate the extent to which their pain interferes with 7 quality-of-life domains that include general activity, walking, mood, sleep, work, relations with other persons, and enjoyment of life. These scales are bounded by the words "does not interfere" and "interferes completely: Higher scores indicates higher levels of pain/Higher impact of pain on daily life.

7. The Brunnsviken Brief Quality of life scale (BBQ)

   Time frame: Day 1

   The Brunnsviken Brief Quality of life scale (BBQ), 12 items, has 4-graded response alternatives. The scale measures the overall self-experienced quality of life. The Satisfaction and Importance rating for each life area is multiplied and summed for a total quality of life score ((items 1 * 2) + (items 3 * 4) and so forth). Higher scores indicate higher levels of subjective QoL.

8. Self Care of Chronic Illness Inventory

   Time frame: Day 1

   Self Care of Chronic Illness Inventory, 29 items, measures self-care behaviors in persons with chronic illnesses. The scale measures three aspects of self care; Self-Care Maintenance, Self-Care Monitoring (or Symptom Perception), and Self-Care Management. Scores on each scale are standardized to range from 0 to100 with higher scores indicating better self-care