ABSTRACT
IMPORTANCE: Improved vision self-monitoring tools are required for people at risk of neovascular complications from age related macular degeneration (AMD). BACKGROUND: to report the self-monitoring habits of participants with intermediate AMD using the Amsler grid chart, and the use of personal electronic devices and gameplay in this over 50 year old cohort. DESIGN: single-centre descriptive study carried out at the Centre for Eye Research (CERA), Melbourne, Australia. PARTICIPANTS: 140 participants over 50 years of age, with a diagnosis of intermediate AMD and best-corrected visual acuity (BCVA) of ≥6/12 in each eye. METHODS: structured questionnaire survey of participants who were enrolled in natural history of AMD studies at CERA. MAIN OUTCOME MEASURES: frequency of vision self-monitoring using the Amsler grid chart, and frequency of general use of personal electronic devices and gameplay. RESULTS: Of 140 participants with mean age of 70.5 years, 83.6% used an Amsler grid chart, but only 39.3% used it once per week. Most participants (91.4%) used one or more personal electronic devices. Of these, over half (54.7%) played games on them, among whom 39% played games once a day. Of participants aged 50-69 years, 92% (95%CI 85.1-98.9) were willing to play a game to monitor their vision, compared to 78% (95%CI 69.0-87.0) of those aged 70 years and older (P < 0.05). CONCLUSIONS AND RELEVANCE: a large proportion of AMD patients already use personal electronic devices. Gamification techniques are likely to increase compliance with self-monitoring, leading to earlier detection in the next generation of patients with neovascular AMD.
Subject(s)
Monitoring, Physiologic/methods , Self Care/methods , Video Games , Visual Acuity/physiology , Wet Macular Degeneration/rehabilitation , Aged , Aged, 80 and over , Female , Humans , Male , Middle Aged , Prognosis , Surveys and Questionnaires , Visual Field Tests , Wet Macular Degeneration/physiopathologyABSTRACT
BACKGROUND: Informal caregivers of patients with loss of vision often have to give physical and emotional support because of the high level of dependence induced. Although it is known that these informal caregivers suffer a higher risk of being affected by burn-out syndrome or depression, the various dimensions of burden, especially of informal caregivers of patients with neovascular age-related macular degeneration (nv-AMD) have not yet been investigated. OBJECTIVE: The objective of this study was the evaluation of the German version of the caregiver reaction assessment (CRA) questionnaire in a collective of informal caregivers of patients with nv-AMD. In this context the positive and negative influences on the informal caregivers were assessed. MATERIAL AND METHODS: Between January 2013 and July 2014 a total of 150 informal caregivers of patients with nv-AMD filled out the CRA independently using a questionnaire survey which had been translated into German. Based on this collective, the psychometric characteristics of the translated questionnaire were evaluated. RESULTS: The informal caregivers of the current collective reported a lower burden in the five subgroups disrupted schedule, lack of family support, self-esteem, health problems and financial problems, compared to the previous CRA studies with caregivers of patients with other diseases. The informal caregivers saw the greatest burden as the disruption of their schedule. Through a principal component analysis the five subgroups could be identified as five factors. It was shown that 19 out of the 24 items could be assigned to the same factors as in the original English version. The internal consistency of the five subgroups was acceptable except for the subscale on self-esteem. CONCLUSION: In this study the CRA has been confirmed as a suitable instrument to assess both positive and negative reactions of informal caregivers related to caregiving of patients with nv-AMD. The results provide support for a five subscale structure of the CRA in the original English version but five items of the questionnaire could be assigned to another subscale.
