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Table 1 Comprehensive list of themes

From: Impact of chronic Immune Thrombocytopenic Purpura (ITP) on health-related quality of life: a conceptual model starting with the patient perspective

a. Signs and Symptoms c. Emotional Health
Fatigue Relationships
   ▪ Inability to get out of bed    ▪ Spouse
   ▪ Limits daily activities    ▪ Family
Bleeding    ▪ Friends
   ▪ Blood blisters    ▪ Children
   ▪ Bleeding from gums Fear, Stress, & Anxiety
   ▪ Nose bleeds    ▪ Fear of accidents
   ▪ Embarrassment    ▪ Fear of intracranial bleeding
Bruising    ▪ Fear of low platelet counts
   ▪ Bruises that never go away    ▪ Fear of dying
   ▪ Bruises all over legs    ▪ Financial stress
   ▪ Petechia    ▪ Stress contributes to low platelet levels
Other    ▪ Anxiety about low platelet levels
   ▪ Migraines    ▪ Anxiety medical profession's lack of knowledge
   ▪ Visual impairment Depression, Isolation, oss of Control
   ▪ Joint aches    ▪ Seek therapy or counseling
     ▪ Suicidal
b. Treatment Effects    ▪ Go off by myself
Steroids    ▪ Feels alone
   ▪ Mood swings    ▪ Family/friends don't understand ITP
   ▪ Weight gain    ▪ Resentment towards health professionals
   ▪ Anger    ▪ Feels pressure to be strong
   ▪ Anxiety Mood & Self-Conscious
   ▪ Trouble sleeping/insomnia    ▪ Mood swings
   ▪ Round face    ▪ Choice of clothing limited due to bruising
   ▪ Lump in back    ▪ Bothered by needle marks
Other treatments    ▪ Avoid mirrors
   ▪ Headaches    ▪ Embarrassed by bleeding
   ▪ Hair loss    ▪ Self-conscious about bruising
   ▪ More susceptible to colds and fungal infections  
d. Functional Health f. Social and Leisure Activities
Daily Activities Sports/exercise/physical activities
   ▪ Housework, including cooking    ▪ Unable to go to the gym
   ▪ Fatigue limits daily activities    ▪ Unable to do sports, boxing, martial arts, skydiving, climbing, dancing
   ▪ Extreme care in doing simple tasks Leisure activities
Changes in Lifestyle    ▪ Unable or too tired to go out with friends
   ▪ Inability to plan for the future Travel is limited or more difficult
   ▪ Reduction in risk-taking activities Feelings of isolation due to physical and emotional effects of ITP
   ▪ Hide the severity of disease from family Social stigma
Sleep    ▪ People suspect spousal or parental abuse due to bruising
   ▪ Restlessness  
   ▪ Not comfortable  
   ▪ Tired, but unable to sleep  
e. Work Life g. Reproductive Health
Absences Women's Reproductive Issues
   ▪ Permanent disability    ▪ Hysterectomy because of bleeding
   ▪ Frequent absences due to illness, and due to medical visits    ▪ Heavy menstrual bleeding
   ▪ Unemployed    ▪ Inability to have children
Change in Attitudes Sex
   ▪ Work to support family    ▪ Bruising
   ▪ Work in a low risk environment    ▪ Bleeding
   ▪ Work is a lower priority    ▪ Reduced libido
   ▪ Work is not as satisfying  
Productivity  
   ▪ Fatigue hinders work  
   ▪ Working part-time due to absences  
Career advancement  
   ▪ Lost promotions  
   ▪ Unable to pursue desired career  
   ▪ Change career