The patients’ view: age-related macular degeneration and its effects – a meta-synthesis

Abstract

Aim

The aim of this meta-synthesis is to find out what it means for patients with age-related macular degeneration to live with visual impairment, how they cope with the illness and how they experience their medical care, including vascular endothelial growth factor inhibitor therapy.

Method

Inclusion criteria: qualitative studies exploring patients’ experiences with age-related macular degeneration in their daily lives and with medical care, published in journals in English or German. The included studies were analysed following the rules and principles of grounded theory.

Results

For the analysis, twenty-four articles matching the inclusion criteria were identified. Three main analytic themes emerged from the included studies: (i) a life shaped by losses; (ii) the burden of medical treatment; and (iii) coping with vision loss. For patients, visual impairment/vision loss means living with multiple losses in various domains of life. With the introduction of vascular endothelial growth factor inhibitor therapy, patients with neovascular age-related macular degeneration have a good chance of slowing down the disease progression; therapy does, however, also represent a major burden.

Conclusion

New strategies need to be conceived to reduce the burden of medical treatment and to improve the dissemination of information about age-related macular degeneration.

IMPLICATIONS FOR REHABILITATION

• Most of the people with age- related macular degeneration seem to adapt to visual impairment.

• Medical treatment implies a great physical and psychological burden for patients with neovascular (wet) age- related macular degeneration.

• The physical and psychological burden needs to be recognized and addressed in the management of patients with neovascular (wet) AMD in medical facilities.

• More research is needed on how rehabilitation services may support the adaptation process of patients in the different stages of AMD.

Keywords:

• Age-related macular degeneration
• visual impairment
• vascular endothelial growth factor inhibitor therapy
• patients’ experiences
• meta-synthesis
• qualitative research

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This study was funded by the Friebe foundation (Germany). The project number is T0498/30395/17.