Table 2 Summary of themes and codes, including examples

 Code 1.01 Symptoms: vision

Difference between patients: range from no vision to very good vision; fluctuating vision; diminishing vision; vision in darkness; floaters; colour perception; contrast; blurred vision; field of vision; one or two eyes affected; vision influenced by medication

 Code 1.02 Symptoms: pain and discomfort

Differences between patients: range from no pain at all to unbearable pain; numb / mushy feeling / burning feeling; contraction of muscles; red eyes; light sensitivity; fatigue; tearing eye; dry eyes; distinction between long or short time since diagnose; not visible for social environment

 Code 1.03 Comorbidity

Differences between patients; cause of symptoms unclear due to comorbidity; influence of comorbidity on stability of uveitis; differences in diagnostic trajectory due to comorbidity

 Code 1.04 Medication use and side effects

Diversity in kind of medicines, types and dosages; self-initiated start of medication; wrong medication; lifelong use of medication; medication in consultation with doctor; knowledge about side effects results in calmness; side effects; long term effects of medicines; individual differences in medication preferences; (no) medication use as treatment outcome

 Code 2.01 Recognition / diagnostic process

Diagnosis after a lot of examination; start with wrong diagnosis; diagnosis by coincidence; diagnosis by other specialist; slow referrals from general practitioner to specialist; fast referrals from general practitioner to eye hospital; general practitioner / hospital / acute care unit / doctor in training is unknown with uveitis; wrong diagnosis and wrong medication; adopt uveitis in protocols

 Code 2.02 Easy access to treating specialist

Time consuming to get to see own doctor; short consultation – face-to-face or by phone – saves a daypart in the hospital; unnecessary disease burden through bad accessibility of doctor (time, examinations, daily function); knowledge about uveitis is limited at acute care unit and by doctors in training; patient records are badly read at acute care unit; lack of central point of contact or coordinator; gives peace of mind if you know you can reach someone in case of emergency; self-initiated start with medication because doctor is not available

 Code 3.01 Employment

Differences between patients; ranging from lost their job to being fine with fulltime job; work adjusted; no responsive work environment

 Code 3.02 Sports

No influence on sport; see ball too late; sports glasses; pain during exercising

 Code 3.03 Mobility

Limited mobility; complaints dependent on weather conditions; can bike / cannot bike; cannot drive a car

 Code 3.04 Watching TV / reading

Difficulties with reading; difficulties’ with watching TV

 Code 3.05 Dependency

Need others to help travelling, small jobs in the house.; lifelong dependency of medication; dependency of glasses

 Code 3.06 Relationships

Much understanding and social support; disorder is trivialized; difficulty in explaining the disease; not visible

 Code 4.01 Uncertainty: inflammation or not?

Some patients clearly recognized an inflammation, others absolutely not; getting experienced in symptom recognition through the years; barrier to contact doctor because of doubts about having an inflammation; panic

 Code 4.02 Uncertainty: future

Long term effects of medication; development of uveitis in future; fear of becoming blind; inheritability; fear that both eyes get affected; not getting better, only worse; or no worries about future

 Code 4.03 Uncertainty: cause complaints

Cause is unknown, treatment cannot be focused on cause; differences between patients with or without underlying cause or comorbidity; more research into the cause of uveitis; different opinions about association food and symptoms; stress increase as a cause of symptoms

 Code 4.04 Stress

Not being taken seriously by healthcare providers; accessibility of own doctor; barriers in daily functioning; uncertainty

 Code 5.02 Outcome improvement

Vision; quality of life

 Code 5.01 Stability

Variety in the degree of stability; gladness when uveitis is stable; stability influenced by medication; stability is cycloid

 Code 5.03 Shared decision making

Type of medication and side effects are important topics; doctor takes time and has knowledge; patient prepared for consultation; not always room for discussion; not own doctor following protocol no room for initiatives of patient; an intermediary such as rheumatism practitioner would be nice