Difficulties of daily tasks in advanced glaucoma patients-a videotaped evaluation

Objetivo: O objetivo deste trabalho foi avaliar objetivamente, com registro em vídeo, as dificuldades dos pacientes com glaucoma avançado na colocação de colírios hipotensores e na realização de tarefas do cotidiano. Métodos: Realizou-se um estudo prospectivo observacional em pacientes com glaucoma avançado e perda visual. Os dados foram coletados durante 5 meses e posteriormente aplicados questionários (questões demográficas, qualidade de vida, autoadministração de colírios e aderência ao tratamento) e realizadas entrevistas e gravações das tarefas em vídeo (autoadministração dos colírios, leitura, subir e descer escadas, deambular em espaços apertados e pavimentos irregulares). Realizou-se avaliação oftalmológica com registro em formulário pré-definido e pesquisou-se a correlação entre os defeitos de campos visuais e as limitações dos pacientes. Resultados: Com 25 participantes foram abtidos um total 12 horas de vídeo.Todos os doentes afirmaram ser capaz de colocar os colírios hipotensores e 68%afirmaram nunca ter falhado na instilação do colírio. No entanto, 20% não conseguiram instilar uma única gota no olho. Setenta e dois por cento (72%) dos pacientes afirmaram nunca tocar o frasco no olho, porém 40% afirmaram tocar. Houve dificuldade moderada nas atividades, especialmente ao deambular em espaços com obstáculos e em pavimentos irregulares. Alguns pacientes apresentaram mecanismos proprioceptivos de adaptação à baixa visão (como tatear o degrau com o pé). Houve uma correlação entre a severidade dos defeitos de campo visual e maior limitação nas atividades. Conclusão: Os portadores de glaucoma avançado têm considerável dificuldade nas atividades da vida diária e na instilação de colírios, frequentemente com percepção deficiente. Alguns pacientes apresentam adaptações proprioceptivas para superar parte da limitação visual. Descritores: Glaucoma; Gravação em vídeo; Qualidade de vida; Cooperação do paciente; Atividades cotidianas


I
t is estimated that glaucoma is the 2nd largest global cause of blindness 1 .In the case of a chronic disease whose treatment usually includes self-administration of hypotensive eyedrops, treatment adhesion is essential to reduce the risk of progression of glaucomatous damage 2 .
Treatment adhesion refers to all the aspects which distinguish the correct administration of treatment prescribed 2,3 , beyond the correct compliance with the use of medication by the patient and the appropriate persistence (continued treatment over time).
In glaucoma, non-adhesion to treatment is associated with the progression of glaucomatous damage 4,5 , leading to visual loss 6 .Studies estimate that adhesion occurs in 25 to 39% of patients with initial glaucoma 2,[7][8][9] .But patients with advanced glaucoma, by noticing some visual impairment, are more motivated to therapeutic adhesion; however, these patients have greater difficulty in self-administering eyedrops 10 .Such difficulty may be responsible for involuntary non-adhesion and not perceived by the patient, as suggested in recent studies of the capacity of eye-drop administration in patients with advanced glaucoma 11,12 .
The correct placement of a droplet in the conjunctival fornix depends on several factors, such as the ability to see 13 and squeeze the bottle 14 or to detect whether the droplet has fallen in or out of the eye 15 .Only three studies used videotaping to objectively assess the difficulty of patients with advanced glaucoma in self-administering hypotensive eyedrops 11,12,15 .
Besides the difficulty in using eyedrops, the patients with advanced glaucoma reported greater difficulties in many daily tasks 16,17 .Thus, these patients have a lower quality of life than patients without glaucoma and patients with inicial glaucoma 18,19 .Cowdin et al. confirmed that the visual field defects translate into negative impact on quality of life [20][21][22] , and that patients with advanced glaucoma are at a higher risk for falls 23 .However, there is no study objectively assessing with video recording the abilities and difficulties of patients to perform daily tasks.
The aim of our study was to assess objectively and with video recording the performance on specific daily tasks of patients with advanced glaucoma.The secondary objectives included estimating the quality of life of these patients identifying the relation between visual field defects and the limitation in performing daily activities and quality of life.

Study design
We conducted a prospective unicentric observational study.The study lasted 5 months (from April 1 to August 31, 2012).

Selection of participants
A systematic sample of the patients selected was obtained in a glaucoma consultation during the study period at the Hospital and University Center of Coimbra, Portugal, sector of Ophthalmology, subspecialty Glaucoma.The first three patients of each consultation day that met the inclusion criteria were invited to take part in the study.The study was explained to the patients, who filled a written and oral informed consent.The inclusion criteria in the study were: • Primary open angle glaucoma (POAG) diagnosis by tonometry, gonioscopy, assessment of the optical disc and visual field • Diagnosis made by the ophthalmologist at least in the consultation prior to the consutation to select the participant • Participant's age e" 18 years old • Experience in self-administration of hypotensive eyedrops for tat least 6 months • Visual acuity (VA) d" 20/60 or moderate to severe campimetric defect in at least one eye 11 The exclusion criteria were: • Other types of glaucoma • Patients who claimed to be unable to self-administer the eyedrops • Patients with other eye diseases responsible for visual loss.

Data collection methods
A questionnaire was applied and interviews were held by nurses and secretaries (after prior training) with various demographic, social, treatment adhesion and quality of life questions (using the validated instrument Glaucoma Quality of Life 15, GQL15).Each patient had a complete ophthalmologic examination with recordings in a previously created form: eye and surgical history, ophthalmic medication in use, VA, biomicroscopy, Goldmann applanation tonometry, fundoscopy including assessment of the optic disc, gonioscopy, results of visual field exams and optical coherence tomography (OCT).

Quality of life assessment -GQL 15
The GQL15 (Glaucoma Quality of Life 15) is a validated instrument for measuring the quality of life that includes 15 questions that can be aggregated into a single summary measure through the sum of the values of answers to the 15 variables.The higher the value in this scale, the lower the quality of life applied to vision.The questionnaire assesses difficulties in: •

Video recording
The recording of each task was performed by the author AM, who did not witness the results of the questionnaire and ophthalmologic evaluation to avoid bias.The duration planned for the recording was 5 minutes per task.

Self-administration of eyedrops
To assess the performance in the self-administration of hypotensive eyedrops, we asked the patients to put one droplet in each eye, using their hypotensive eyedrops (if the patient had not brought it, we offered a bottle).We do not use artificial tears (unlike the study held by Hennessyet al. 11 in order to create most of the conditions of normal use of the patient.We recorded all patient attempts, but evaluated the 1st so that the results would not get crossed with the patient's training.Each patient was allowed to use their usual technique to put on eyedrops, whether it involved the use of a mirror, a reclining chair or even a stretcher for the administration in supine position.The following variables were registered: successfully putting on at least one droplet in the eye (defined as "partial success", and the respective time in seconds) successfully putting on only a droplet in the eye without touching the ocular surface (defined as the "complete success" and the respective time in seconds) number of attempts until success, number of drops administered.

Reading
An updated correction was prescribed to the patients for close vision and a scale for close vision and a magazine were provided.The reading capability at about 40 cm distant was recorded on video.
For the tasks described below the patients who had major motor and mobility difficulties were excluded.

Walking around in spaces with obstacles
Only one room was used and the obstacles were prepared the same way: the room had an area of 6m 2 and the patients were asked to follow a pathway of 2m lined with obstacles so that the free area of the pathway was only 50cm long.Thus, it was possible to detect how the visual defects interfered in the ability to identify side obstacles (some located on the floor and others 70 cm tall).
The following outcome variables were recorded (after the video recording): number of touches or bumps into the obstacles, number of proprioceptive aid (such as the use of hands or elbows to feel the obstacles instead of seeing them) and overall rating of the difficulty to complete of the task.

Walking on uneven flooring
Patients were sent to a specific inpatient ward, where they were invited to walk 5m of uneven flooring and climb a poorly visually marked step.This task was video recorded, as well as the classification of difficulty of each patient in performing it.

Climbing stairs
The patients were asked to climb 8 steps of a stair in wich edges were not visually marked.It was recorded in video, the overall performance was classified and the proprioceptive aid was identified.

Going down the stairs
The procedure was the same as in the previous task, with the evaluation of the difficulties to go down the stairs.

Statistical analysis
We used the program SPSS version 20 for the statistical analysis.In the continuous variables of normal distribution we used the t-test to identify the differences between two groups; in the non-normal distribution we used the Mann-Whitney test.In categorical variables with normal distribution we used the chisquare test, and in the non-normal distribution we used the Kruskal Wallis test.The multivariate logistic regression models were built to predict factors of difficulty and the success in each of the tasks.The significance considered was 0.05.

Characterization of the population
In this study, interviews and objective evaluation were performed with videos of 25 patients, with a duration of total recording of approximately 12 hours.The mean age of participants was 73 years old.Nine participants (36%) were female; 68% were retired (Table 1).
The 25 participants said they heve been using the hypotensive eyedrops for more than 6 months and instill the eyedrops by themselves.Twenty-four patients (96%) reported to follow the glaucoma treatment correctly.Fifty-five percent of the patients (55%) reported having difficulties in instilling eyedrops, and 30% reported occasionally not being able to instill eyedrops by themselves, needing help.Seventeen patients (68%) reported never having failed to instill even a droplet of eyedrops, and 18 patients (72%) said they had never touched the ocular surface with the bottle (Table 2).

Ophthalmologic assessment
The mean VA of the patients was 1.03 logMAR (equivalent to 1/10 in decimal notation).The mean tonometry was 13 mmHg, the excavation of the optic disc in average 8/10 (there were some patients with a total excavation and VA for unilateral light perception).The mean deviation of all visual fields was -22dB (severe campimetric loss).Patients were treated with an average of 2 bottles hipotensorese eyedrops, and 92% had undergone glaucoma surgery.

Self administration of eyedrops and adhesion to treatment
Forty percent of the patients managed to put a droplet of eyedrops in the eye with an appropriate technique.Twenty percent of the patients were unable to self-administer even a droplet, even after several attempts.Patients placed on average 2.45 droplets in the eye (one patient put 7 droplets), and it took them on average 10.4 seconds to put the droplet in the eye (the maximum was 38 seconds).Seven patients (28%) were unable to detect whether the droplet entered eye: 1 patient put the droplet in the eye but did not detect it and instilled 2 more droplets; the other 6 patients put the droplet out of the eye and finished the task for thinking that they had put the droplet correctly.(Table 3) Table 3 describes the assessment results with video of the patients self-administering the eyedrops.

Objective reading assessment
18 patients (70%) had little or no difficulty.

Objective assessment of daily activities
Five patients (20%) were excluded from the assessment of these activities for presenting important locomotor difficulties, in order to avoid selection bias.
Regarding the performance of the patients to go up and down the stairs, 8 participants showed proprioceptive adjustment mechanisms like using their foot to feel the position of the step before supporting their weight on the step or touching the handrail to go up or down the stairs.Three of the patients had marked difficulties to go up and/or down the stairs.
We did not have enough sample of patients to complete logistic regression models and predict the factors for success or failure in putting eyedrops or performing motor tasks that were statistically significant, but there was a trend to failure in patients with greater visual field defects and worse visual acuity, and a trend to success in daily activities in patients who had proprioceptive adaptation mechanisms which allowed them to partially compensate for their low visual function.
Rev Bras Oftalmol.2015; 74 (3): 164-70 There was a trend to correlate a worse quality of life in each of the GQL 15 questions to a greater visual field defect (mean deviation), being it statistically significant only for the issue of difficulties to see at night (Pearson's correlation, p = 0.042).

DISCUSSION
After a literature review with several databases (PubMed, Scopus, Cochrane Central, Ovid, and Google Scholar), we noted that the current study was the 4th one to objectively assess with video self-administration of hypotensive eyedrops in advanced glaucoma, and the only one to objectively assess the performance of various daily tasks [10][11][12] .
The objective assessment with video recording of various daily tasks allowed to characterize the performance and difficulties of the patients with advanced glaucoma, which information can help to improve the quality of life of these patients.
In this study we observed that the patients did not realize their visual impairments: they did not estimate their vision correctly, did not realize their difficulties in administering eyedrops and in walking.
The concern for the self-administration of eyedrops is relatively new and important, since the wrong operation is responsible for non-adhesion to treatment, which can lead to the progression of glaucomatous damage.Our results are similar to previous studies 12 , but the Portuguese patients seem to have poorer perception of their limitations: 68% of the patients in our study denied failure to instill the eyedrops, but 20% failed to put at least one droplet, while in the american study 11 36% of the patients stated that and 35% failed to instill.
From the 72% of Portuguese patients (and 69% of Americans) who said they never touched the eye with the bottle, only 40% did not touch (versus 24% of Americans).We should warn patients about the potential risk of contamination of the bottles when they touch the ocular surface 24 and risk of ocular injuries 25 .Subjective observational studies estimated that patients failed by 50% in putting eyedrops (the droplet fell out of the eye) 26,27 .
Seven patients (28%) did not notice if the droplet was instilled into or out of the eye.One of the patients instilled the droplet into the eye but did not realize it and put several other drops, causing an increase to the cost of the treatment 28 .And the other 6 patients put the droplet out of the eye and thought it was instilled in it, generating concerns of therapeutic poor compliance and the possibility of progression of an already advanced disease 6,15 .
It is important that the ophthalmologist check the instillation technique of hypotensive eyedrops in the patients with glaucoma, to guide them regarding the proper handling of the medication, as signaled in the Brazilian study 29 which showed that only 2.5% of new cases of glaucoma presented occlusion of the lacrimal point after instillation, and that 23.3% with glaucoma recurrence instilled the eyedrops with the eye closed, drawing attention to the problem of correctly instilling the eyedrops.Patients should be supervised or a chaperone can instill the eyedrops to the patient in rder to increase the chance to instill of droplet in the eye.
In the present study, the poor perception of the patients regarding their limitations was widespread, occurring in predicting the ability to perform tasks such as walking on uneven surfaces, and also in the self-assessment of VA, where the mean self-assessment of VA was 0.46 whereas the mean VA measured by the ophthalmologist was 0.1.
Performing tasks like walking in spaces with obstacles and uneven surfaces was very difficult and had some "near-falls", which justifies the increased fear of falls among patients with glaucoma 21 and the reduced quality of life proved in this and other studies 17 .It would be interesting to train patients with advanced glaucoma regarding orientation and mobility to prevent accidents and improve the quality of life.In this study, several patients had conscious or unconscious adaptive proprioception mechanisms that allowed them a better performance than expected for their visual function.It would be helpful to teach these simple mechanisms to all patients with advanced glaucoma to increase their quality of life.Some of these mechanisms include: touching the step with the foot to identify it, touching the handrail (before going up or down the stairs and on uneven floors), walking with the arms bent and protruding elbow (in tight spaces, to identify side obstacles), touching or stretching the arms in tight spaces (not to collide with little visible obstacles).
Although the results were interesting, it was complex and time consuming to have this full assessment in each patient, which had limited the size of our sample.It would be useful to develop protocols with video technicians, as the ones developed in other studies 11,12 instead of having the ophthalmologist tape the patients.And also to develop protocols along with other hospitals, even in national level, in order to have a multicentric study identifying peculiarities in different patient populations and increasing the capacity for possible construction of logistic regression models.
The performance of daily tasks is also a challenge for patients with low visual function by other eye diseases, so it is interesting to expand the objective assessment of tasks for these patients, as done in the study comparing glaucoma to retinal pathology 12 in the self-administration of eyedrops, with poor performance being found in both groups.

CONCLUSION
Patients with advanced glaucoma have a marked difficulty in daily activities, often with poor perception of their limitations.There was a correlation between the severity of the visual field defects and a higher limitation in the activities.
Many patients failed to self-administer the hypotensive eyedrops and did not detect said failure.
Some patients presented proprioceptive adaptations to overcome part of the visually impairment in locomotor daily tasks.

THANKS
To the secretary (Paula Ramos) and nurses of the Ophthalmology consultation for the effort during the interviews and questionnaires.to the technicians of the Ophthalmology consultation for their support during this work.

SUPPLEMENTARY MATERIAL
Some videos will be available in a protected internet page as a complementary part of this work for consultation by health professionals, provided that users comply with the principles of ethics and the Declaration of Helsinki in: http://www.eyerobot.pt/glaucoma.php Reading newspapers or magazines • Walking in the dark • Seeing at night • Walking in floor with differences in level • Adapting to an environment with intense lighting • Adapting to an environment with poor lighting • Going from a lighted room to a dark one or vice versa • Avoiding tripping over objects • Seeing objects approaching from the side • Crossing the street • Going up or down the stairs • Walking without bumping into objects • Estimating the distance from the foot to a step • Finding fallen objects • Recognizing faces

Figure 1 .Figure 2 .
Figure 1.Objective rating of the ability to walk in a room with several side obstacles