Table 2.

Themes of Humanistic Burden of RP Identified

Theme	Key Findings	Reference
Activities of daily living	● Inability to drive ● Difficulty seeing in changing light conditions ● Difficulty shopping ● Difficulty completing household chores ● Difficulty reading books, menus, magazines, and newspapers ● Difficulty playing sports and partaking in leisure activities ● Difficulty orienting in unfamiliar and crowded places ● Difficulty using steps ● Accidents: falling, bumping into things, depth perception impacted by loss of peripheral vision	Senthil et al, 201725a
	● Inability to drive ● Difficulty orienting and walking in unfamiliar and confined places	Bittner et al, 201027b
	● Ocular discomfort when performing daily tasks	Latham et al, 201526c
Emotional	● Facing emotional and psychological challenges due to progressive visual loss: fear of losing eyesight completely or going blind early, uncertainty about the future ● Feelings of frustration, shock, anxiety ● Embarrassment associated with being labelled disabled or blind ● Loss of autonomy and independence ● Fear of accidents, greater risk to personal safety, inability to respond in emergency situations	Senthil et al, 201725a
	● Feelings of panic and devastation ● Loss of autonomy and independence	Bittner et al, 201027b
	● Grief following diagnosis ● Fear of judgement: perception of use of mobility cane ● Fear of loss of autonomy and independence	Fourie, 200728d
	● Dealing with negative feelings ● Emotion ● Communicating visual loss to people	Latham et al, 201526c
	● Significant negative correlation between level of depression and visual functioning	Chacón-López et al, 201329e
Social and relationships	● Missing social cues causing anxiety ● Dependence on others for reading, shopping, transport, and navigating in darkness ● Fear of being left alone and of rejection by partner	Senthil et al, 201725a
	● Spouse unable to fully understand living with vision impairment	Bittner et al, 201027b
Work/school	● Uncertainty arising from how future visual loss affects career ● Loss of peripheral vision associated with difficulty reading computer screens	Senthil et al, 201725a

Notes: ^aThis publication describes a qualitative semi-structured interview and thematic analysis of 23 people with RP in Australia; ^bThis publication is based on a qualitative focus groups of 8 people with RP who are legally blind in the US; ^cThis publication describes findings from a quantitative online survey of 166 people with RP who are vision impaired; ^dThis publication is based on a qualitative retrospective self-study of a person with RP in Ireland; ^eThis publication describes findings from a quantitative study in 26 people with RP conducted in Spain.