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National Eye Health Education Program (NEHEP) |
Introduction
- Overview of the Low Vision Education Program
- Overview of Study Objectives
- Strengths and Limitations of Qualitative Research
Methodology
Findings
- Practice Size and Years of Experience
- Definition of Low Vision
- Definition of Vision Rehabilitation
- Training and Skills Needed to Provide Low Vision Care
- Office Responsibilities
- Low Vision Referral and Its Barriers
- Time Spent Educating Patients
- Materials They Currently Use to Educate Patients
- Materials With Which They Would Like to Educate Patients
- Types of Materials Used to Educate Themselves
- Synopsis of Participants' Responses
- Low Vision Referral
- Barriers
- Communications From Referral Doctor or Physician
- Time Spent Educating Patients
- Materials Ophthalmologists and Optometrists Currently Use to Educate Patients
- Materials Ophthalmologists and Optometrists Use to Educate Themselves
This report summarizes the qualitative research effort conducted to gain feedback from ophthalmologists, optometrists, and eye care office staff across the country.
The National Eye Health Education Program (NEHEP) of the National Eye Institute (NEI), one of the National Institutes of Health (NIH), coordinates education programs on diabetic eye disease, glaucoma, and low vision. Low vision is a visual impairment, not correctable by standard glasses, contact lenses, medicine, or surgery that interferes with a person's ability to perform everyday activities. Low vision can result from a variety of diseases, disorders, and injuries that affect the eye. Many people with low vision have age-related macular degeneration, cataract, glaucoma, or diabetic retinopathy.
The goal of the low vision program is to improve the quality of life for people age 65 and older that have decreased visual function that interferes with their activities of daily living. The program has developed strategies to reach this goal. They include consumer media campaigns, educational materials, an outreach program for professionals and a traveling exhibit that will be displayed in shopping malls nationwide.
The NEI is interested in exploring what ophthalmologists, optometrists, and eye care staff across the country know about low vision and its system of care. In doing so, the NEI will ask ophthalmologists and optometrists about low vision and vision rehabilitation; access issues related to it; how they define it; and how they go about educating themselves, their peers, and patients about low vision and vision rehabilitation. The objectives of this study were as follows:
Data collected from focus groups and other forms of qualitative research cannot be generalized to a specific population. A focus group is not a statistically significant representation of a population. However, it consists of a group selected from the population being studied, and it can be used to learn topics of concern to that population. It is imperative that the interpretation of qualitative data not be misrepresented in quantitative terms. For example, a statement that "9 of 12" participants concur on an issue within a focus group should not be understood as "75 percent of the population of Anytown, USA." Again, qualitative data may not be aggregated or quantified to characterize a population as a whole.
Identifying issues of concern to certain populations is one of qualitative research's strengths. This research can also be used to formulate questions that can be answered by obtaining quantitative data. As the results of this study will indicate, focus groups often identify topics of concern that researchers may not have considered earlier, or they may suggest that the researchers need to restructure the questions.
To obtain data from major metropolitan areas within the United States, project staff conducted standard focus groups in densely populated locations. Thirteen standard focus groups were conducted nationally from mid-February through mid-March 2001.1 Standard focus groups were conducted in the following states: California, Colorado, Connecticut, Georgia, Minnesota, and Washington. In total, the standard focus groups comprised six groups of ophthalmologists, six groups of optometrists, and one group of eye care office staff.
To reach ophthalmologists, optometrists, and office staff in other areas of the country, project staff conducted online focus groups. 2 This format also enabled participants from more than one geographical region to participate in the focus groups simultaneously. Fourteen online focus groups were conducted, and comprised participants from the following states: Arkansas, Massachusetts, New Hampshire, New Mexico, North Carolina, North Dakota, South Dakota, Tennessee, Texas, Utah, and Virginia. Project staff conducted a total of six groups of optometrists, five groups of ophthalmologists, and three groups of office staff.
| Locations for standard focus groups | Number of Ophthalmologists | Number of Optometrists | Number of Office staff |
|---|---|---|---|
| New Haven, CT | 23 | ||
| Minneapolis, MN | 17 | ||
| Denver, CO | 22 | ||
| Seattle, WA | 20 | ||
| San Diego, CA | 21 | 8 | |
| Atlanta, GA | 15 | ||
| Locations for online focus groups | Number of Ophthalmologists | Number of Optometrists | Number of Office staff |
| Massachusetts/New Hampshire | 20 | 11 | |
| North Dakota/South Dakota | 17 | ||
| North Carolina/Virginia | 19 | 6 | |
| Texas | 21 | ||
| New Mexico/Utah | 5 | 8 | |
| Arkansas/Utah/Tennessee | 8 |
Different screeners from those used for the standard groups were developed for the online recruitment process since this data collection methodology requires participants to have computers that meet certain technological criteria: a computer monitor with 800 x 600 resolution; a Web browser such as Netscape or Internet Explorer; a working knowledge of Web browsers; and a software package that included Windows 95, Windows 98, or Windows NT.
Ophthalmologists and optometrists who specialized in low vision care were restricted from participating in the focus groups. Likewise, eye care office staff who worked for low vision specialists were also excluded from participating in the focus groups. Project staff excluded these groups to prevent a select few from dominating the discussion, thereby potentially decreasing the quality of data collected.
The first two standard focus groups were videotaped in order to have immediate footage to assess the effectiveness of the moderator's guide in gaining feedback from participants. All of the standard focus groups were audiotaped for data collection purposes and the tapes were later transcribed. Transcripts from the online focus groups were organized and printed out for data collection purposes, also.
Project staff hired professional focus group facilities to recruit participants for the standard and online focus groups. However, due to problems encountered during the recruitment process, there were some changes in participating states. Focus group facilities that were responsible for recruiting participants for the Montana and Idaho focus group were unsuccessful in recruiting the standard 12 persons, with an expected show of 8 to 10 participants.
The process for online focus groups involves entering participants' names, mailing addresses, and e-mail addresses into a central database. Project staff then assign participants user names and passwords, and send e-mails that detail instructions for how to sign into the online focus group facility to perform a test login. Technical support staff need to have a lead time of 72 hours for participants to perform a test login. However, many recruiting firms provided us with incorrect e-mail addresses and much time was lost trying to contact the participants and get the correct e-mail addresses. Once the participants received the e-mail, many did not log into the system 72 hours beforehand. Sometimes trial logins did not occur until hours or minutes before the actual focus group was to take place.
Once logged into the system, many participants experienced confusion with the layout of the test login site. If the participants used AOL as their Internet provider, many times they had to switch the protocol from JAVA to HTML. The participants would not know this, and technical support would have to explain it to them, sometimes several times during the actual focus group. Additionally, when participants could not find the long, narrow box to type text into, they would have to maximize their screen by clicking on the open box in the upper right-hand corner. They would not usually know this without assistance from technical support. Or, if participants attempted to enlarge the dialogue box area, the site would freeze, and they would have to correct this by refreshing the page. But they would also not normally know this without help from technical support. Hence, the lesson learned here is the critical importance of having technical support staff available and ready to assist online focus group participants 72 hours prior to the focus group, up to the end of the actual focus group.
The moderator's guide was developed to obtain feedback from participants regarding the types of materials needed to educate themselves and their patients about low vision and vision rehabilitation. The moderator's guide began by asking participants how many years they had been in practice or working in the eye care industry. The moderator's guide then continued to examine what participants believed to be the definitions of low vision and vision rehabilitation. They were also asked to describe the types of skills and training needed to provide low vision care and vision rehabilitation.
Once participants provided these general definitions and descriptions, they were asked more specific questions related to low vision referral, such as ophthalmologists' and optometrists' decision process for low vision referral, eye care office staff's role in the referral process, the types of barriers encountered once patients were referred to a low vision specialist, the types of materials used to educate themselves and their patients on eye health care issues, and the manner in which they would prefer to receive educational materials for themselves and their patients.
The eye care practices in which participants worked varied in size. There were many ophthalmologists, optometrists, and eye care staff who worked in multiperson offices, while only a few worked in one person offices. The years of experience among ophthalmologists, optometrists, and eye care staff also varied, ranging from 3 months to 50 years.
Overall, a vast majority of ophthalmologists and optometrists had a general understanding of low vision. When asked what low vision is, many of the ophthalmologists and optometrists responded with a specific visual acuity.
20/70 or 20/80 or worse, not correctable with surgery. (Minnesota Ophthalmologists)
Best corrected vision of 20/400 with glasses or surgery. (New Hampshire/Massachusetts Ophthalmologists)
Best corrected visual acuity in the better eye of less than 20/30 or visual field loss which hampers daily activities.(New Hampshire/Massachusetts Ophthalmologists)
Vision not correctable by normal glasses or contact lenses, vision less than 20/70. (Texas Optometrists)
Vision that's not correctable. So, 20/40 or less. (Connecticut Optometrists)
When a patient has visual acuity less than 20/70 with both eyes. (North Dakota/South Dakota Optometrists)
People with about 20/60 or 20/70 vision or worse, who start to have a lot of trouble functioning with normal-sized print. (Washington Ophthalmologists)
The term low vision means uncorrected visual acuity of 20/50 or worse. (Arkansas/Tennessee/Utah Ophthalmologists)
Vision less than 20/100 best eye. (Arkansas/Tennessee/Utah Ophthalmologists)
Vision less than 20/200. (Arkansas/Tennessee/Utah Ophthalmologists)
Vision that doesn't correct better than 20/40. (Colorado Optometrists)
Some ophthalmologists and optometrists described low vision as the need for additional visual aids and devices. For example, one Washington ophthalmologist described a person with low vision as "a patient with decreased vision who requires special aids beyond normal glasses or contacts to read." A Texas optometrist described low vision as "vision that is below normal functional ranges with conventional correction that can be improved upon by the use of low vision aids." Another optometrist in the same focus group said that low vision is "vision that is below normal functional ranges with conventional correction that can be improved upon by the use of low vision aids."
Other ophthalmologists and optometrists in the various focus groups said that low vision is based on functional limitations.
In general it's when a person has trouble doing their daily activities. (Minneapolis Ophthalmologists)
Vision poor enough that they (patients) are unable to do what they want to do. (Minneapolis Ophthalmologists)
Loss of functional vision to do everyday tasks. (North Dakota/South Dakota Optometrists)
Patients who cannot accomplish the task which they wish to accomplish without special devices and training because of an eye problem which cannot be helped with medical or surgical means.(Arkansas/Tennessee/Utah Ophthalmologists)
Eye care staff also had a somewhat general understanding of low vision. In fact, they also described low vision as a diminished visual acuity or loss of daily function. Some of the eye care staff said that they associate low vision with legal blindness. For instance, one participant from the New Hampshire/Massachusetts office staff focus group said people with low vision are "legally blind and challenged with daily tasks."
Many of the ophthalmologists and optometrists also had in mind a definition of vision rehabilitation. Ophthalmologists and optometrists in the various focus groups said that vision rehabilitation ranges from teaching patients how to use optical aids and devices to teaching them how to function as normally as possible within their respective home and work environments. One ophthalmologist explained, "low vision rehabilitation is the process by which a person is able to return to their normal activities as much as possible through training and devices." The following are additional definitions of vision rehabilitation provided by ophthalmologists and optometrists.
Vision rehabilitation has to do with helping them get through their daily life with the limitation in their vision by changing their environment. (Minnesota Ophthalmologists)
The corrective measures to get someone to see better or function better...with some type of device, optical, electronic, simply a better lamp.(Minnesota Ophthalmologists)
The ability to utilize the residual visual capacity of the individual through a combination of training, education, or assistive devices so that some or all of the functional goals which are impaired can be achieved. (New Hampshire/Massachusetts Ophthalmologists)
Teaching the visually challenged person to enhance the vision they have through lifestyle education and visual aids. (Texas Optometrists)
Teaching the patient to maximize the residual vision and teach them to use LV devices to accomplish (a) task. (Texas Optometrists)
The ability to take an individual who is not able to perform their daily tasks and get them to be able to perform their daily living with the aid of optical and non-optical devices. (North Dakota/South Dakota Optometrists)
Retraining [people] to give them skills to allow them to live with decreased vision like learning to read braille. (North Dakota/South Dakota Optometrists)
I think that's basically trying to use the tools that are available to restore as much function as you can...(Colorado Optometrists)
Vision aids and training to get the most out of available vision. (Arkansas/Tennessee/Utah Ophthalmologists)
In addition to training, several of the ophthalmologists and optometrists said that counseling is also a part of vision rehabilitation. One optometrist in the Texas focus groups said that vision rehabilitation is "intervention such as counseling or assisting devices to permit activities otherwise hindered by low vision."
Eye care staff described vision rehabilitation quite similarly to the ophthalmologists and optometrists. Most participants in the eye care staff focus groups described vision rehabilitation as a combination of learning how to use devices, learning how to function within their environments, and learning how to live with their vision loss through counseling. One staff member in the New Hampshire/Massachusetts focus group said, "it means counseling and training individuals to use what functioning vision they have through optical devices." Another participant in the same group agreed by saying vision rehabilitation involved "high-powered lenses, talking books, and oven gadgets." Arkansas, Tennessee, and Utah ophthalmologists made similar statements.
Ophthalmologists and optometrists in all of the focus groups were asked to describe what training and skills were needed to provide low vision care. Many of them said that patience is the most needed skill when providing low vision care. Participants also said that a thorough knowledge of available optical aids and devices is also a necessity, but they all agreed that patience is the most helpful for the low vision specialist and the patient.
A good understanding of clinical optics. Time availability and patience. (Washington Ophthalmologists)
Patience and kindness. (New Hampshire/Massachusetts Ophthalmologists)
Familiarity with a broad range of optical devices, good judgement, patience, diagnostic sharpness. (New Hampshire/Massachusetts Ophthalmologists)
Listening and patience. Lots of magnifiers help, too. (Texas Optometrists)
Patience, compassion, and lots of time.(Texas Optometrists)
Be empathetic with and sympathize with and talk to, but someone who has low vision just requires a lot more time, patience; they're not someone that you can just easily get in and out the door. You're going to need to spend time with them, show them things, teach them things. (Connecticut Optometrists)
A great deal of patience is also required. (Arkansas/Tennessee/Utah Ophthalmologists)
You have to have a type of temperament that they enjoy or do well working with elderly patients, people who might be difficult to communicate with, and you know, people where you have to really take your time.(Colorado Optometrists)
Office responsibilities varied by practice. The majority of office staff said that their job responsibilities range anywhere from scheduling appointments to conducting refractions. One participant in the New Hampshire/Massachusetts focus group said--
In addition to running the office, I still occasionally perform visual fields and do fundus photography. I'll also assist in minor office procedures.
Another participant in the same group said that they had the same type and variance of office responsibilities.
I make the appointment, greet at the desk, order their contact lenses, collect their co-pay, make their next appointment, occasionally fit and write up optical orders, make surgical arrangements, test visual fields, (and) teach contact lens insertion.
Eye care staff were asked how often they interact with patients and their families in order to obtain a comprehensive understanding of their office responsibilities, and to understand their role in patients' eye health care. Due to transportation problems often encountered by patients with poor vision, office staff participants said that patients' family members regularly accompany them to the eye care facility. Consequently, office staff were more likely to talk to patients and their family members when patients were waiting to see the ophthalmologist or optometrist. One eye care staff member in the New Hampshire/Massachusetts group stated, "often you get to know the family as well as you do the patient. If a patient has extremely poor vision, then they are not capable of getting themselves to the office and you meet their families often." On the other hand, those office staff who worked in much larger practices said that they did not have as much interaction with patients due to the number of patients seen and their multitude of duties.
Participants were asked specifically about their low vision and vision rehabilitation referral process. Some ophthalmologists and optometrists agreed that when there was nothing more that they thought they could do for the patient, they referred them to either a low vision specialist or for community services, depending on the their level of need. However, the majority agreed that the decision to refer is done on a patient-by-patient basis. Most ophthalmologists and optometrists said that they don't follow any stringent criteria when making patient referrals. Therefore, many of the ophthalmologists and optometrists said that they usually decide to refer out when the patient becomes frustrated, and can no longer enjoy their daily activities. Some ophthalmologists and optometrists said that sometimes the patient may request the referral.
When they get to the point where it's functionally affecting their life and they're having difficulty in their activities of daily living, beyond my ability to help them.(Washington Ophthalmologists)
(When I) get a sense of either they're frustrated with their current vision, or they're frustrated that things aren't getting better, or whatever it is, and you get a sense that now's the time, when things we're doing just aren't getting there, or they're really needing to do other things, at which point we enlist the aid.(Minnesota Ophthalmologists)
When you sense the patient is really unhappy with their vision and you realize that there is not much more you can do medically for them, that's when you start thinking about it (referral). (Minnesota Ophthalmologists)
If they continue to complain about their limitations after our local low vision practitioner has done the best possible. (New Hampshire/Massachusetts Ophthalmologists)
At the patient's request or at the (patient's) point of depression. (Texas Optometrists)
When I believe I cannot provide them with the type of vision that allows the patient to do the things that are most important to them in life.(Texas Optometrists)
I feel like there's nothing else that I have to offer the patient to make them happy or at least functional, then I would say, I know this specialist that you (patient) should go and see and maybe this will give you other opportunities that I don't know exist. (Connecticut Optometrists)
When they reach an unsatisfactory reading level or if they have special distance needs that cannot be corrected with normal spectacle correction.(Arkansas/Tennessee/Utah Ophthalmologists)
When I have nothing more that I can offer in my area of expertise that will meet their needs for better function. (Arkansas/Tennessee/Utah Ophthalmologists)
When I cannot improve their vision anymore and (their vision is) not adequate.(Arkansas/Tennessee/Utah Ophthalmologists)
Ophthalmologists and optometrists expressed that their willingness to refer was also dependent upon the patients' motivation. Many continued to say that the patient's level of motivation greatly depends on whether or not they have accepted their vision loss. Eye care providers said that if a person is still in the denial phase of their vision loss, then referral is in vain. One Minnesota ophthalmologist said, "they need to go through the grieving process and get to the point where they're interested in doing something constructive and positive. If they're still upset and not really ready, they may have unrealistic goals or expectations." A California optometrist confirmed the sentiment by saying, "they have to be ready and interested in using different optical aids besides conventional glasses or just a simple hand held magnifier." An optometrist from the Colorado focus groups explained,
(There are) cases where you know that something could be done, (but) they often don't want those solutions. They want a simple solution, (a) regular pair of glasses and (they) stop talking about low vision. I don't find them that happy to take a referral for the most part.
Another Colorado optometrist further explained,
You have to understand the typical patient as well. A typical patient, you may be the third person they've seen in six or nine months, and they walk in with a certain degree of frustration. They're under the impression that, all I want to do is change my glasses so I can see better, and it's pretty universal among this patient population.
Ophthalmologists and optometrists also stressed that patients who are still in the denial phase may reject referral once the suggestion is made to them. For many patients, the suggestion of referral means that the eye care provider has given up on them. An ophthalmologist in one of the Washington focus groups said,
They don't like that. That means you're dumping them. You're telling them it's hopeless, you don't want to see them. They expect you to be the specialist.
Other patients who have worked past the denial phase are usually more willing to discuss the option of referral. Most ophthalmologists and optometrists said that a majority of patients have already tried everything, and are willing to pursue other options to give them a sense of hope. One Colorado optometrist commented, "they're happy that you have an answer for them." North Dakota/South Dakota optometrists said that, "(in most cases), if the patient has expressed frustration, they seem to be willing to examine their options." On the same note, an ophthalmologist from the Washington focus groups said that patients "usually are glad or hopeful that there's something else that can be done for them to improve their quality of life."
Some ophthalmologists said that there is a feeling of failure on their part whenever they decide to refer out. They said that having to admit that there is nothing else that they can do is hard for both parties to accept. A Washington ophthalmologist acknowledged this perception.
I think there's kind of (a) natural reticence to broach the subject with people because, in some ways, it implies that our medical (techniques) have failed or that we're powerless to prevent the loss of their vision, which is a hard thing for both parties to understand.
Ophthalmologists and optometrists said that there are other factors that influence patients' reaction to referral. Many patients are concerned with the cost of referral. A Colorado optometrist said, "money, I think is always a barrier." This is especially true for elderly patients who are living on a fixed income. Ophthalmologists and optometrists said that health insurance such as Medicare often does not cover referrals and/or optical devices prescribed by the low vision specialist. One Minnesota ophthalmologist said--
Whereas certainly with a lot of the elderly people, when you mention some of the prices of some of the devices, they say oh, no, that's too much (money).
Another ophthalmologist in the same group said--
The devices themselves can become very expensive, when you get into special spectacles with telescopic lenses, or the projection systems. They can run $1,000 and up, and that's not covered by any sort of insurance program.
Eye care staff also said that cost was a significant barrier to the referral process. An office staff member from the Virginia/North Carolina groups said that, "(the) only (barrier) is their insurance company." Other eye care staff confirmed this statement.
Some Colorado optometrists said that patients are many times unwilling to use the devices once they receive them. The optometrists continued to say that patients experience frustration when trying to use devices, and consequently stop using the devices altogether. This becomes another source of frustration for the patient as the patient is disappointed by the amount of money that has been spent on a device that goes unused.
Another barrier or factor that complicates referral is transportation. Most of the ophthalmologists and optometrists in urban areas said that they refer to local vision agencies, state associations, and/or commissions for the blind and visually impaired, that may be a great distance away or inaccessible to public transportation. Many of the patients who ophthalmologists and optometrists consider to be in need of referral have to rely on family members and/or friends to get them around. Therefore, many patients are unable to travel long distances. Ophthalmologists and optometrists who reside in rural areas said that transportation to these types of facilities are especially an issue for their patients who rely on others for their transportation. A couple of the optometrists in the Colorado group mentioned that some of their patients live rather far out, and are not able to attend low vision clinics that are not located near their offices.
One optometrist from the North Dakota/South Dakota focus group said, "I must refer to (an) OD in another city one hour away." Another optometrist in the same group confirmed by saying, "we have to import someone from an hour away to come into people's homes to help them with daily living skills." In the Colorado focus groups, optometrists said, "the reason they're not going is usually because of transportation." Ophthalmologists in the Arkansas/Tennessee/Utah focus groups made similar comments. One ophthalmologist commented, "the closest location is about (a) one hour drive, logistics is a terrible problem (in rural areas)." Another ophthalmologist from the same focus groups said, "arranging for a ride to get there, or having to wait for the monthly visit to our area (is a barrier)."
In addition to medical costs and transportation difficulties, eye care providers said that some community services are often overextended, and therefore cannot take additional patients right away. Some eye care professionals said that in most cases it takes as long as 6 weeks for a patient to get an appointment.
When asked about their role in the referral process, many eye care staff said that their role is minimal. Many said that they are primarily responsible for scheduling appointments. One office staff member from the Virginia/North Carolina group said, "(the) doctor tells me (and) I call (to) make the appointment for (the) patient." An eye care staff member in the New Hampshire/Massachusetts group made a similar point regarding the referral process by saying, "(I do) very little unless the patient may call for directions." Another eye care staff member in the same group simply responded, "none" to the question.
Other eye care staff said that their role in the referral process is mainly insurance related. For instance, a New Hampshire/Massachusetts eye care staff member said--
I must make sure that the initial referral is in place from the PCP, that any additional referral from us to another specialist would be agreeable to the PCP and that the site of any proposed surgery would be acceptable to the PCP, the insurer, and the referring MD.
A majority of the ophthalmologists and optometrists said that they are familiar with various public and private community services for the blind and partially sighted in their respective areas. However, very few of the ophthalmologists and optometrists said that they had actually visited the local agencies to which they refer their patients.
Many of the eye care providers said that it would be helpful to have comprehensive information about the services offered by the agencies. They all continued to say that they would like to have this information in the form of a brochure or pamphlet. When asked what would make the referral process easier, several participants in the various focus groups recommended a standard referral form. Although many of the ophthalmologists and optometrists said that they refer patients on a case-by-case basis, there were some who said that they would like to have standard criteria for referring patients.
When asked what type of information they provide to the low vision specialist to whom they refer patients, most of the eye care providers said that they usually fax a brief letter containing the patient's treatment history along with the patient's visual acuities at the time of referral. In reference to referral letters, one Minnesota ophthalmologist said, "I just send the basics to them, and they do what they can." Very few of the ophthalmologists and optometrists said that they speak directly to the specialist.
Mostly, we just send the medical report, saying (what) their level of vision is, what their basic medical problem is that accounts for it, and ask for an evaluation. (Washington Ophthalmologists)
I dictate a letter describing the patient's problem and describing their physical findings.(Washington Ophthalmologists)
(I include) vision acuities, treatment, disease diagnosis. (Minnesota Ophthalmologists)
What the disease is, what their vision is, what their limitations are, and what treatments they're on.(Minnesota Ophthalmologists)
A letter, including case history, tests done, diagnosis, and treatment plan. (Texas Optometrists)
We give the diagnosis and visual acuity, that is pretty much it. (Texas Optometrists)
In terms of communication from the low vision specialist, ophthalmologists and optometrists said that they would like to receive a summary of the treatment provided to the referred patient. More specifically, the eye care providers said that they would like to know the types of devices prescribed to the patient. As one ophthalmologist from the Arkansas/Tennessee/Utah focus groups expressed, "(I would like to be provided a) complete list of services performed, life style problems uncovered and solutions recommended." Another participant in the same group confirmed, "(I would like to know) types of products tried, how well the patient did with them and what they purchased." Eye care providers also said that they would like to know other rehabilitative services and training provided to the patient.
Several ophthalmologists and optometrists in the focus groups said that they very rarely hear from patients after they refer them. An optometrist from the North Dakota/South Dakota focus groups explained, "I think that's a constant problem, losing patients to the (low vision specialist who) suddenly becomes the primary caregiver."
Other ophthalmologists and optometrists said that they do continue to see patients after referral. A California optometrist said, "often the patient will come back and say, thank you for sending me over to (the low vision clinic)." A few ophthalmologists in the Arkansas/Tennessee/Utah focus groups said that they also continue to monitor their patients after referral.
Ophthalmologists and optometrists reported a variety of responses regarding the length of time they spend with patients discussing and/or educating them about their low vision. Some ophthalmologists and optometrists said that they spend 5 to 10 minutes with patients; others said between 45 minutes to 3 hours.
The ophthalmologists and optometrists who did not spend much time with patients did not handle many low vision patients. One North Carolina optometrist said, "[I spend] very little [time], I have little low vision in my office because of a generally young surrounding population." (Note: On the recruitment screener, one of the questions was "Do you provide low vision services in your practice?" A positive answer was a signal to terminate.)
Other ophthalmologists and optometrists did not spend much time with patients because of busy schedules. As one Connecticut optometrist noted, "You definitely have to rebook them because you can't spend an hour with them because you're backed up for all your other patients on your schedule."
For those ophthalmologists and optometrists who spent considerably longer than 5 to 10 minutes educating their patients, they invariably attributed it to servicing low vision patients. As previously discussed, not only do ophthalmologists and optometrists educate on low vision, they sometimes have to convince patients to accept their vision loss. They have to take patients through a grieving process to acceptance and make patients realize that their vision is only going to be so good.
Several ophthalmologists and optometrists stated that patients expect "magic glasses" that will bring their vision back to normal. A Connecticut optometrist stated, "Sometimes the first hour is just getting to the point of them understanding that you can't give them magic glasses and make them see."
Ophthalmologists and optometrists also have to convince patients that using visual aids will help them in their daily routines. One California optometrist noted, "Some of these optical devices look like they're lenses from space...you've got to spend time talking. Let them know how they can benefit from this." In addition to educating patients, ophthalmologists and optometrists have to educate the families about why the low vision family member won't be able to perform certain tasks, like reading recipes to cook dinner, or driving themselves places. They also have to educate families on what tasks the low vision person will be able to perform. One Colorado optometrist said, "You have to bring the entire family into it, because if the spouse doesn't understand why his wife isn't seeing all of a sudden, the adult children have to understand." Sometimes the families of low vision patients are educating the eye care provider about low vision issues. For example, the son or daughter may mention that they notice little things, like their mother may not be reaching for her food properly, or she may spill things, or fall down a lot.
Once ophthalmologists and optometrists convince patients to use visual aids, they have to ensure that the aids meet the expectations and needs of the patient, and that the patient will be able to use the aids by themselves at home. If the patient was not satisfied with the manner in which the aid worked, or felt uncomfortable using it, the patient usually came back for another appointment and the ophthalmologists and optometrists had to repeat the process of educating the patient about a different aid. Again, many eye care providers stated that if a patient became frustrated with a visual aid, they would throw it in a drawer and wind up using a hand-held magnifier from the local five-and-dime.
If the ophthalmologists and optometrists couldn't spend as much time as necessary with the patient, or if the patient seemed as though they were no longer paying attention, the ophthalmologists and optometrists, would book the patient for additional appointments. One Connecticut optometrist said, "then 45 minutes after, you've lost their attention (so you say) you know, let's do this another day."
Some of the ophthalmologists and optometrists explored their patients' visual problems in initial office visits with a history sheet that outlined functional limitations. Some ophthalmologists and optometrists, would begin their office visits with open-ended questions, designed to solicit information on visual problems. Others relied on office staff to elicit low vision information or functionality information (which would lead to low vision issues) from patients. Ophthalmologists and optometrists indicated that a relationship needed to be established with the low vision patient to open a two-way channel of communication to find out what the real issues were in order to educate them about various forms of treatment, and advise them on what course to take.
I mean, you've got to do almost a psychological and social evaluation of that patient within this timeframe that we're talking about, before [you] can get into the hard goods. (Connecticut Optometrists)
We have a technician who works with the patients with low vision. She has a history sheet that she fills out and she has a limited number of things that she'll show to them to see if it helps.(Washington Ophthalmologists)
I usually have open-ended questions at the beginning, How are you doing? How are you spending your time? (Minnesota Ophthalmologists)
I ask it during the case history. It can go from a few seconds to many minutes, depending on their problems. (Texas Optometrists)
Ophthalmologists and optometrists also gave a variety of answers on the question of educational materials for patients: videos, articles, the Internet, educational conferences, AAO pamphlets, newsletters, talking with colleagues, large-print fact sheets, CD-ROMs, field trips, continuing education classes, and just general knowledge. The method of dissemination of educational material varied as well. Some offices had literature in the waiting room that patients could pick up at their leisure, other offices had staff who would distribute the literature.
Several eye care providers stated they preferred handing out pamphlets to patients because they could be shared with family members, and because they were readily available. Eye care providers mentioned that the American Academy of Ophthalmology (AAO) offers its members a 35 percent discount on patient informational materials, which are developed by ophthalmologists who volunteer their time and expertise. They continued to explain that AAO members are also provided with a subscription to the journal, Ophthalmology, and the monthly news magazine, EyeNet. The Opticians Association of America (OAA) also offers its members discounts on educational resources, and a subscription to the journal, American Optician.
What I find very useful in our practice that our American Academy of Ophthalmology does is provide me small handouts or brochures on specific diseases that my patients have that, essentially, cause them to lose their vision. (Washington Ophthalmologists)
Brochures/pamphlets, some medical literature, films/videotape, meetings.(New Hampshire/Massachusetts Ophthalmologists)
I educate them verbally, or if brochures are available. (Arkansas/Tennessee/Utah Ophthalmologists)
Primarily printed promotional brochures. (North Dakota/South Dakota Optometrists)
Many of the ophthalmologists, optometrists, and eye care staff developed quite an array of original ideas for materials that they would like to use, educate their patients. Some ophthalmologists and optometrists mentioned they wanted audiocassette tapes for patients who couldn't see well enough to watch videotapes. Other eye care providers and staff wanted videotapes on low vision because it would decrease the amount of time required for them to educate patients on their eye conditions. As one California optometrist mentioned,
I'd like to see an easy-to-see video that you could hand to a patient and they could take it home and watch it over and over...that would save me maybe an hour's worth of discussion time.
Other ophthalmologists and optometrists noted that patients could retain only so much information, and that handing out materials for patients to review at home would help reinforce what was told them. Some ophthalmologists and optometrists mentioned that having a video play in the waiting room would be helpful, especially if it was played on a closed-circuit television (CCTV) so that patients could view how a CCTV worked.
A few ophthalmologists and optometrists suggested that a comprehensive brochure/folder be prepared that covered such topics as what services are offered, what the patient can expect when visiting a low vision clinic, how long the appointment should take, what types of insurance are accepted and what is/is not covered, and a list of local providers and phone numbers. One California optometrist said,
It would be nice if we could actually have a large pamphlet or three-ring binder that included all these things as far as maybe some descriptions in large print, what facilities are available, where would you go [in your community].
Other ophthalmologists and optometrists said that many low vision patients are elderly and on fixed incomes and are not likely to have Internet access, so a brochure or binder would be helpful in educating them about low vision as opposed to directing them to a Web site.
On the other hand, several of the ophthalmologists and optometrists said that Web sites were easy to pass on, and that the families of low vision patients usually had access to the Internet and could guide the patients through the information. A few ophthalmologists and optometrists stated they wanted a sophisticated technological program that would present a customized presentation of downloaded information from the Internet. As a general resource, they used the Internet to gain access to information, but were deluged by the amount of information they received when performing a simple search. They needed an "editor of information," someone who could sift through the Web sites and pick out the most informative and relevant ones, and provide a concise compendium of Web sites. Other ophthalmologists and optometrists suggested having a Web site where the patient could punch in their Zip code, and NEI or another organization could send them an informational packet specific to their locale.
A few eye care providers suggested that a nationwide support network of low vision patients be established, according to the particular cause of their low vision. Focus group participants said that the patients involved would understand the importance of life independence, and would be made to feel that they were not alone in their disability.
One California optometrist wanted to know where to find employment information for his younger patients with low vision who want to work. He stated that the government enacted laws that required employers to accommodate employees with low vision, and he received many requests from his patients for information about available job opportunities.
Other eye care providers and office staff wanted wall charts to hang in the exam rooms, pictures of devices with instructions, canned success stories of people who have effectively dealt with low vision, and low vision workshops geared toward patients.
A few ophthalmologists, optometrists, and eye care office staff suggested that a "low vision van" be staffed with optometrists and ophthalmologists and equipped with devices and dispensable information that could tour the country, educating the populace. One Colorado optometrist said, "If they could load all these things on a truck and this thing could take a tour of the country...I would think there'd be a lot of takers."
Some office staff preferred their ophthalmologist or optometrist educate them. They stated that if they had to read a pamphlet, they wouldn't feel motivated to read it, and may not understand it. Many felt comfortable enough with their ophthalmologists and optometrists to trust them in providing accurate information.
A few ophthalmologists and optometrists mentioned that they had too much information already, and that they didn't have time enough to read what they had. Therefore, they suggested other types of materials, resources, and learning mechanisms for their patients. One California optometrist said, "it's just hard for a patient to remember anything when they walk out of the room, even though you spoke to them for an hour; they go outside and forget everything."
It might be nice to have some sort of brochure to give to the patient or their family so they know what kinds of services are offered and what to expect...what the process is like when the patient goes in, how long the evaluation is going to take and the different types of assistance that are available. (Washington Ophthalmologists)
A sort of compendium of resources that could be sent to a doctor's office for that area that they could hand to the patient that would give phone numbers, Web sites, and local providers of vision care on a regional basis. (Minnesota Ophthalmologists)
Low vision workshops for patients.(New Hampshire/Massachusetts Ophthalmologists office staff)
I think a loaning library with a variety of devices that could be lent out and returned on a trial basis would be very helpful to everyone, the doctors and patients included.(North Dakota/South Dakota Optometrists)
A well-produced video (in high magnification) describing common causes of low vision and the basic classes of aids to get the most use out of vision with description of training services available.(Arkansas/Tennessee/Utah Ophthalmologists)
The most common materials that ophthalmologists and optometrists educated themselves on were journal articles, continuing education (CE) classes, conferences, the Internet, and conversing with colleagues. Many of the ophthalmologists and optometrists used the same resources to educate themselves as they did to educate their patients. What they learned from various sources, they related to their patients in an easy-to-understand format.
Several ophthalmologists and optometrists mentioned it would be helpful having an informational brochure or informational packet that listed available services, contact numbers, treatment options, a description of low vision, local resources, places to obtain aids, average time required to train in the use of visual aids, common pathologies that lead to low vision and accompanying prognoses, new treatments, various professionals who provide low vision services, and what services are/are not covered by insurance. The ophthalmologists and optometrists wanted a handy resource material to give to patients because many of them did not have time to spend educating patients, or because patients could not retain all the information the ophthalmologists and optometrists related to them verbally.
A few of the optometrists in California stated that a "new state law" required them to take a certain amount of hours in pathology, inflammation, and glaucoma, but that low vision was not required. When low vision CE classes were offered, not many ophthalmologists and optometrists wanted to take them because they were "boring." As one California optometrist noted, "The only thing more boring than a low vision class is a low vision article." Some ophthalmologists and optometrists also complained that the CE classes offered did not offer much new information; just basic information that they could have gleaned from a journal or a text book. Nonetheless, several states require that eye doctors take continuing education courses to keep their certification, many of which are offered through the AAO and the OAA.
Although ophthalmologists and optometrists said that the CE classes are boring, some of the eye care providers were interested in training opportunities in low vision. Since most of their training in low vision dated back to their residency days, they were interested in current low vision treatment options. Other ophthalmologists and optometrists were interested in being trained in the process of evaluating patients and providing helpful solutions to their low vision problems.
Some of the eye care office staff said that they had taken CE classes and formal training through a community college to receive certification as an ophthalmic assistant. As one eye care office staff member from the Virginia/North Carolina groups said, "three or four times a year we (have to) attend seminars for the visually handicapped." Other eye care office staff stated they "just wanted to know" so that they would be able to answer patients' questions.
One of the things is the new law specifically states we have to have so many hours in pathology, and so much in inflammation, and so much in glaucoma, and so forth, but nothing is said about low vision. (California Optometrists)
There's a broad range of things. There are ophthalmology information sites, literature reviews, chat areas, and there's a whole host of disease-specific sites and reference sites; NIH, NLM, on and on. Our own academy is a great resource for a lot of information. (Washington Ophthalmologists)
Professional journals, textbooks, and continuing education classes. (North Dakota/South Dakota Optometrists)
I actually read and hear about the new advances via the newspaper before I read about them in OD journals. (North Carolina/Virginia Optometrists)
Some ophthalmologists and optometrists mentioned that they are hesitant to draw low vision patients into their practice or are not motivated to learn more about low vision. As one Colorado optometrist said, "Let's be honest about it. Doesn't make much money. Doesn't pay my mortgage...and that's why for me to take on low vision isn't worth my while I'm going to send it out."
Ophthalmologists and optometrists noted that many of them are providing services in the "sexier" specialties like laser vision and contact lenses. To overcome the monetary and low-status barriers of low vision, some ophthalmologists and optometrists suggested that grants or fellowships be offered in the area of low vision to motivate them to undertake low vision. Ophthalmologists from Georgia and Massachusetts suggested that low vision be administered as an ophthalmic subspecialty, which would increase its status in the eyes of ophthalmologists and optometrists.
In fact, some ophthalmologists and optometrists said that they were interested in receiving more education on low vision. One Connecticut optometrist said, "I still want to be educated. I must learn...we do need education. Our patients need education."
Another Georgia ophthalmologist posited the idea of having a low vision open house, where ophthalmologists, optometrists, eye care office staff, and patients could spend the day at a low vision center. They could gather information, handle visual aids, and observe various forms of treatment or rehabilitation offered to low vision patients.
A few ophthalmologists and optometrists said they received mail from NEI that offered information on various studies and the results, which they shared with their office staff. Some other ophthalmologists and optometrists said they received catalogs for large-print publications (Reader's Digest and New York Times), and catalogs for visual aids. However, some ophthalmologists and optometrists said that since they don't provide low vision services, they wind up throwing the catalogs away.
Several ophthalmologists and optometrists were interested in a Web site that listed information on low vision and pictures of low vision devices with accompanying critical reviews, a "consumer report" of visual aids. Those ophthalmologists and optometrists sought to decrease the amount of times patients ordered devices, couldn't figure out how to work it or decided it was too difficult to work, and wound up throwing it in a drawer.
One Georgia ophthalmologist noted that eye care professionals should be made aware of local services to low vision patients that are available through the phone company, post office, and transit companies. He informed the group that in the state of Georgia, the following activities could take place.
You can call or write to the telephone company, tell them that this patient has low vision, cannot dial the phone, that they should have access to operator assistance on all their calls, at no charge. Post office. Even though the mailbox is supposed at the roadside, if they've got a long path to go, they can't see well to get to it, you can have that mailbox moved up to the doorway and the person will deliver it there, and not on the street. You can have the transit company be aware that there's a low vision patient and the patient can have a number to call, where there [will] be like a minibus that can come and take them, at certain times, to their doctor's appointment.
One Georgia ophthalmologist also mentioned his perceived need for sensitivity training for ophthalmologists and optometrists. He stated that "on many occasions a patient will come in for an appointment and mention they saw Dr. so-and-so, who said the patient had retinitis pigmentosa and that there was nothing he could do, go ahead and get braille training and a white cane. The patient is left devastated." The Georgia ophthalmologist said informing a patient about low vision should be approached delicately and with compassion. The following were also mentioned as the types of materials and training ophthalmologists and optometrists need to treat their low vision patients.
For most ophthalmologists, low vision is a frustrating, end-of-the-road, I-can't-do-anything-more-for-this-patient task. Any help from the NEI to ease the burden of low vision for the patient is greatly appreciated. (Arkansas/Tennessee/Utah Ophthalmologists)
I would like to see a list of common pathologies which results in LV. Prognosis for vision after each pathology. Possible visual aids and devices. Cost involved with each, average time required to train the use of such devices. (Texas Optometrists)
What I'd like to have is a Web site where I can go to it and plug something in and not get 2000 sites that I have to go check to see if this is going to be the right or wrong site. (Washington Ophthalmologists)
There was an open house, where the physician and particular patients, you know, that you could line up over a month, that you think would benefit from this, if both of you could be there, to participate, I think that would be really good. At a low vision clinic, [staff] came down and spent the day seeing what they had, getting brochures. (Georgia Ophthalmologists)
The basic description/definition of low vision, the treatment options available, and where to get aids/etc., as well as possible new options coming down the road. (New Hampshire/Massachusetts Office Staff)
A unified, small brochure or booklet describing what services are available, approximate cost, whether covered by insurance, and giving a telephone number for the contact person. (New Hampshire/Massachusetts Ophthalmologists)
A better grasp of the range of devices available and materials to illustrate these to patients. (Arkansas/Tennessee/Utah Ophthalmologists)
A directory with a paragraph with each entry on the scope of what they have to offer, agencies, low vision specialists, everyone included finances available, too. (Virginia/North Carolina Optometrists)
What resources are available for young people who want to still go to work with their low vision. There are laws now that mean employers have to make accommodations for people with poor vision, whether that's a talking computer. I have patients who ask, 'Well, where can I go to find out about getting the job?' And I don't know where to begin to send them. (Georgia Ophthalmologists)
The most frequent answers to the focus group question categories are outlined below.
Ophthalmologists and optometrists refer patients when
Barriers to referral or a patient's treatment
The type of information that ophthalmologists and optometrists would like to receive from low vision specialists to whom they refer patients
1. Summary of treatment plan for patient including
The amount of time ophthalmologists and optometrists spent educating their patients depended upon the following
Ophthalmologists and optometrists educate their patients with information gathered from the following sources
|
1A focus group that is conducted in-person with all of the participating respondents. This type of focus group is usually conducted in a facility equipped with audio and video taping devices, and allows observers to view the group through a one-way mirror. 2A focus group that is conducted similar to a chat room. This type of focus group is conducted with the use of computers and Internet capabilities. Individuals may observe the focus group by logging onto the Internet site where the focus group is taking place. |
This page was last modified in January 2007
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