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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

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