Evaluating the quality of life of low vision patients

An initial assessment has formed part of the low vision care package for many years at the Low Vision Centre. Historically, this took the form of a joint tick-box and anecdotal record of the patient's/service user's low vision problems and aspirations. The tick-box answers were on a yes/no basis and offered no option to grade difficulties (Figures 1a and 1b). It was completed by a member of staff from information given by the patient and was then made available to the specialist optometrist at a subsequent appointment. The assessment was time-consuming and possibly tiring for the patient.
Furthermore, it was evident that although for audit purposes it was possible to describe the outputs of the Low Vision Centre purely in a quantitative manner, a qualitative assessment of impact from low vision intervention was lacking. We also felt that an indication of the patient's emotional state and motivation would be helpful in tailoring the low vision care in a sensitive manner.
We therefore commissioned the company Brainbox Research to investigate our patients' and staff's requirements for a quality of life evaluation tool. Focus groups were held with patients, volunteers and staff from the Low Vision Centre and it was found that ideally it would:

Analyse and assess the individual's quality of life
Direct the action undertaken by the practitioner and the patient by mutual agreement
Give anonymous feedback on the quality of service.

The questionnaire should, furthermore, be quick and easy to complete, and be available in a format that enables the patient to complete the form either independently, or with a member of staff. The Focus-QoL is available in paper and electronic formats. Normally, a landscape format with a minimum of Arial 16pt font is used. A CCTV is available for patients who wish to complete the questionnaire themselves, but require greater magnification, or benefit from using false colour contrast. Most questionnaires are, in fact, still completed together with a member of staff.

FOCUS-QoL FORMAT
There are three parts to the Focus-QoL: a questionnaire, a priorities form, and a satisfaction questionnaire.
Questionnaire
The analysis of the focus group discussions highlighted eight themes:

Employment
Loss
Information
Independence
Safety
Isolation
Confidence
Hassles.

These directed the content of the questionnaire to assess psychological wellbeing, social functioning, day-to-day vision and the consequences of visual loss, such as lack of employment and isolation.1
The questionnaire comprises 25 questions. The first 17 refer to daily activities such as managing personal care, social activities, reading, and the final eight questions assess happiness, motivation, and confidence. All questions are answered in a tick-box format and can be completed in 15-20 minutes (Figure 2). This helps practitioners to see at a glance areas that are causing the patient most concern.
The answers to the questionnaire are scored and the results entered into a spreadsheet.
This means it is possible to calculate a general QoL score for any one individual, make comparisons of scores before and after intervention, and make cross-section comparisons for any one item across a sample group.
Figure 3 shows an example of a
spreadsheet evaluation of 10 of the 25 questions, from a sample of 100 patients at initial presentation. The maximum score is 100, and the average QoL score for this sample was 56.3. Follow-up questionnaires are currently being sent to samples of patients four weeks after initial consultations, and to all patients at six and 12-monthly intervals. This may help us in the future to highlight trends for review periods.

Priorities form
The second part of the Focus-QoL is a priorities section and has proved to be a valuable communication aid. The patient can highlight up to three problem areas they wish to address, and allocate a level of difficulty to each.
This forms the basis of a discussion between the practitioner and the patient, about which task they are going to work on in that current session, thereby managing expectations and gaining the buy-in from the patient (Figure 4).
It may be, for example, that the main priority is judged as 'extreme difficulty' and a lower priority as 'a little difficulty'.
In order not to demotivate the patient, it is important to set achievable goals. It may, therefore, be more appropriate in the first instance to work on a lower priority task that is graded as 'a little difficulty', rather than tackling a main priority judged to be an 'extreme difficulty'.
At the Low Vision Centre we have found this provides an ideal opportunity to highlight that most low vision devices are task-specific, and that the outcome of the session is dependent on the practitioner and the patient working together to find possible solutions. Time is, therefore, spent in a well-structured manner, and frustrations and disappointments are less frequent.
The situation should, therefore, not arise at the end of the session, when the patient says: 'What I really wanted was' We have also found that it is an excellent framework for visiting optometry students to build on, as it guides them in developing listening and problem-solving skills.
At follow-up appointments, patients and practitioners can review the priorities, assess current progress, reconsider if those previously chosen are still pertinent, and amend as required.
Satisfaction questionnaire
The third part of the Focus-QoL is the satisfaction questionnaire, which is a tick-box form with space for additional comments. This is issued to all patients attending the Low Vision Centre. It can either be completed at the time, and posted anonymously in a collection box in the reception area, or a freepost envelope is offered.
This comprises 10 questions, and again the answers can be scored and evaluated in a spreadsheet, as with the initial questionnaire (Figure 5). Each answer is rated on a 1-5 scale, with a maximum score, therefore, of 50. Again, cross-section comparisons are possible.

LOW VISION AND HIGH STREET PRACTICE
So how can the Focus-QoL be of use in other specialist centres, or high street practice? Let us consider some demographics and how this may impinge on future service delivery.

Demographics
It is common knowledge that our population structure is changing. The number of people age 65 and over in the UK has increased by 51 per cent since 1961 and it is projected that by 2025 there will be more than 1.6 million people aged 65 and over, than people under 16.2
This has widely understood consequences in general terms, such as the impact on our pension systems, but there will also be repercussions for the high street optometric practice.
These demographic changes mean that conventional service provision in the secondary healthcare and voluntary sectors are highly unlikely to be able to deal with the increase in patient numbers, as increasing age or duration of disease are risk factors in the four most common eye disorders: cataract, glaucoma, diabetic retinopathy and age-related macular degeneration (AMD).
In the College of Optometrists' documentation on preventing falls,3 a study was quoted saying it had been found that up to 17 per cent of people aged over 65 were suffering with low vision merely because they require an up-to-date refraction. In the same document another study was quoted that found in the over 75 age group, this was more than 30 per cent. The optometrist is ideally placed to differentiate between those who solely require an up-to-date prescription and those whose visual needs are greater.

Community low vision
New care pathways and shared care schemes mean that there will be more opportunities for high street optometrists to meet the greater demand for delivery of low vision care in a primary health care setting. Comparison of outcomes for clinical governance and quality assurance reasons may become a factor in funding allocation.
Community low vision schemes, where optometrists work with low vision dispensing opticians, rehabilitation workers and others, deliver local care in familiar surroundings and contribute to helping people maintain their independence. This is not only the desire of the individuals themselves, but is a socio-economic necessity - residential care is an expensive commodity.
The evaluations of the current low vision and AMD care pathway pilots will hopefully provide further evidence to encourage the Department of Health to develop a sound financial basis for community low vision.

Outcomes
It is probably fair to assume that most optometrists have a grasp of income and expenditure issues. But what exactly is the difference between input, output, outcomes and impact?
To explain briefly, an output is a countable unit, that is the output relating to a day's testing could be how many eye examinations had been performed. An outcome on the other hand is a benefit or change achieved, such as increased reading comfort with a new prescription. Impact can be positive or negative, and is a measure of sustainable changes by any given intervention. This is understandably more difficult to identify, but could be highlighted by 'before and after' measures.
For low vision service provision in particular, in order to evaluate the efficiency of the service provided, it is necessary to examine not only the financial balance sheets in conjunction with the outputs, but also the achieved outcomes.

Funding
As we all know, low vision care does demand additional expertise and hardware, as well as increased chair-time, and discussions about appropriate remuneration for professional time are always hot topics.
Until such time, when low vision care is funded as a matter of course, it may be that individual schemes can secure local funding, especially with the advent of practice-based commissioning and payment by results.
The Focus-QoL is a quick and easy-to-use assessment and evaluation tool that may help you deliver a targeted, time-effective and cost-effective approach to low vision care, and demonstrate the outcomes of your intervention and help you in your funding discussions. Sample copies of the questionnaire can be obtained for a small (or even large) donation to cover expenses from the Low Vision Centre at Birmingham Focus on Blindness (see panel below for contact details).
For details about training in the use and evaluation of the Focus-QoL please contact Brainbox Research, info@brainboxresearch.com

References
1 Fylan F, Grunfeld E A, Morrison-Fokken A. Focus-Qol: Measuring quality of life in Low Vision, International Congress Series 2005;1282 (in press).
2 Office for National Statistics. Chap 1. In: Social Trends No 33 2003 Ed. London HMSO 2003.
3 The importance of vision in preventing falls. 2003 www.college-optometrists.org/professional/NSFfalls.pdf

Anita Morrison-Fokken is an optometrist and director of low vision services at Birmingham Focus on Blindness