Quality Of Life In Age-related Macular Degeneration Research Articles

Impacts of impaired face perception on social interactions and quality of life in age-related macular degeneration: A qualitative study and new community resources.

AimsPrevious studies and community information about everyday difficulties in age-related macular degeneration (AMD) have focussed on domains such as reading and driving. Here, we provide the first in-depth examination of how impaired face perception impacts social interactions and quality of life in AMD. We also develop a Faces and Social Life in AMD brochure and information sheet, plus accompanying conversation starter, aimed at AMD patients and those who interact with them (family, friends, nursing home staff).MethodSemi-structured face-to-face interviews were conducted with 21 AMD patients covering the full range from mild vision loss to legally blind. Thematic analysis was used to explore the range of patient experiences.ResultsPatients reported faces appeared blurred and/or distorted. They described recurrent failures to recognise others' identity, facial expressions and emotional states, plus failures of alternative non-face strategies (e.g., hairstyle, voice). They reported failures to follow social nuances (e.g., to pick up that someone was joking), and feelings of missing out ('I can't join in'). Concern about offending others (e.g., by unintentionally ignoring them) was common, as were concerns of appearing fraudulent ('Other people don't understand'). Many reported social disengagement. Many reported specifically face-perception-related reductions in social life, confidence, and quality of life. All effects were observed even with only mild vision loss. Patients endorsed the value of our Faces and Social Life in AMD Information Sheet, developed from the interview results, and supported future technological assistance (digital image enhancement).ConclusionPoor face perception in AMD is an important domain contributing to impaired social interactions and quality of life. This domain should be directly assessed in quantitative quality of life measures, and in resources designed to improve community understanding. The identity-related social difficulties mirror those in prosopagnosia, of cortical rather than retinal origin, implying findings may generalise to all low-vision disorders.

Assessing quality of life in the treatment of patients with age-related macular degeneration: clinical research findings and recommendations for clinical practice

BackgroundThe importance of incorporating quality-of-life (QoL) assessments into medical practice is growing as health care practice shifts from a “disease-based” to a “patient-centered” model. The prevalence of age-related macular degeneration (AMD) is increasing in today’s aging population. The purpose of this paper is: (1) to discuss, by reviewing the current literature, the impact of AMD on patients’ QoL and the utility of QoL assessments in evaluating the impact of AMD and its treatment; and (2) to make a recommendation for incorporating QoL into clinical practice.MethodsWe conducted a PubMed and an open Internet search to identify publications on the measurement of QoL in AMD, as well as the impact of AMD and the effect of treatment on QoL. A total of 28 articles were selected.ResultsAMD has been found to cause a severity-dependent decrement in QoL that is comparable to systemic diseases such as cancer, ischemic heart disease, and stroke. QoL impairment manifests as greater social dependence, difficulty with daily living, higher rates of clinical depression, increased risk of falls, premature admission to nursing homes, and suicide. The National Eye Institute Visual Functioning Questionnaire (NEI VFQ-25) is the most widely used eye disease-specific QoL instrument in AMD. It has been shown to correlate significantly with visual acuity (VA). QoL reflects aspects of AMD including psychological well-being, functional capacity, and the ability to perform patients’ valued activities, which are not captured by a single, numerical VA score.ConclusionThe literature shows that the adverse impact of AMD on QoL is comparable to serious systemic disease. Eye disease-specific instruments for measuring QoL, such as the NEI VFQ-25, have shown a significant correlation of QoL decrement with measures of disease severity, as well as significant QoL improvement with treatment. The NEI VFQ-25 and other validated instruments provide a wide-ranging assessment of vision-related functioning that is important to patients and complementary to VA measurement. We strongly recommend the incorporation of QoL assessment into routine clinical practice.

The quality of life impact of peripheral versus central vision loss with a focus on glaucoma versus age-related macular degeneration

It is well accepted that conditions that cause central vision loss (CVL) have a negative impact on functional ability and quality of life (QoL), but the impact of diseases that cause peripheral vision loss (PVL) is less well understood. Focusing on glaucoma and age-related macular degeneration (ARMD), the effects of CVL and PVL on QoL were compared. A systematic literature review of publications reporting QoL in patients with CVL or PVL identified 87 publications using four generic (Short-Form Health Survey-36 and -12, EuroQoL EQ-5D and Sickness Impact Profile) and five vision-specific (National Eye Institute Visual Function Questionnaire-51, -39, and -25, Impact of Vision Impairment and Visual Function-14) QoL instruments; 33 and 15 publications reported QoL in ARMD and glaucoma, respectively. QoL was impaired to a similar extent by diseases associated with PVL and CVL, but different domains were affected. In contrast to ARMD, mental aspects appeared to be affected more than physical aspects in patients with glaucoma. The differential impact upon QoL might be a function of the pathology of the diseases, for example potential for blindness and better ability to perform physical tasks due to retention of central vision may explain these observations in glaucoma.

Additional psychometric information and vision-specific questionnaires are available for age-related macular degeneration

To present psychometric information and studies dealing with questionnaires for age-related macular degeneration (AMD) and visually impaired patients in addition to the study by Finger et al. "Quality of life in AMD: a review of available vision-specific psychometric tools". We propose that their literature search should not have focused solely on the specific eye disease AMD. The literature search was partly replicated (PubMed) by using "visual impairment" instead of "macular degeneration" as free text words. Psychometric information was obtained from the additional studies. Preliminary results from a differential item functioning (DIF) analysis used to examine the relationship between item responses on the Vision-related quality of life Core Measure (VCM1) of AMD patients versus patients with other eye conditions are discussed. Eight studies of visually impaired patient populations, including AMD patients, are discussed, with psychometric information from six vision-specific questionnaires. The VCM1 items did not present DIF, which means that the items were equally interpreted by all patients. The results on DIF and the additional studies presented here confirm that a specific eye disorder is of minor importance in the choice of a vision-specific questionnaire or, in this case, a literature search.