METHODS

Ethical approval was granted by the local research ethics committee to carry out the study before its commencement.

All patients with appointments at either of the two low vision clinics between November 1998 and February 1999 were invited to participate in the study. Patients who had attended a low vision clinic during the previous 6 month period were excluded as were patients aged 16 years or less.

Patients were sent a letter in large print giving details of the study approximately 2 weeks before their appointment at the low vision clinic. An interviewer then contacted each patient by telephone to ask if they were willing to participate and if so, to arrange an interview in their home.

Patients who consented were interviewed in their own home 2 weeks before their ILVS clinic appointment. A total of 80 patients (67% of those approached) agreed to be interviewed.

Each patient completed a VCM1 and MLVQ questionnaire in order to assess the impact of their visual impairment on vision related QOL and performance of activities of daily living. Participants also answered some general questions about their health and living arrangements over the past 6 months.

Six months after their appointment with the ILVS, 71 of the 80 patients (89%) originally interviewed agreed to be reassessed. Of the remaining nine patients, two had died and seven were in poor health and were unable to be interviewed. Vision related QOL and restrictions in activities of daily living were measured using the VCM1 and MLVQ. In addition, patients were asked if they had attempted to use any of the LVAs that they may have been prescribed for each of the tasks in the MLVQ and if so, how useful they had found the LVA for the task.

The questionnaires were analysed using dBaseIV and SPSS. Statistical tests used for comparing results from the original study with the follow up study were the one way analysis of variance, Wilcoxon signed rank test, and the McNemar test.

RESULTS

The majority of participants recruited to the study were diagnosed with ARMD alone (38, 53%) or ARMD with an additional diagnosis (11, 15%) (Table 2).

The majority of participants were 71 years of age or older (55, 78%) and approximately two thirds (49, 69%) were female (Table 3).

Fifty five (78%) of the original cohort had not been seen previously by the ILVS (Table 3). Sixteen patients (22%) had used the service on at least one occasion previously, although not within the 6 month period preceding their first interview for this study. Ten of the 16 patients (62%) had not been seen for at least 1 year (Table 4).

Over half of the patients who participated in this study were living alone at the time of interview (38, 54%).

ACTIVITIES OF DAILY LIVING

The results of the MLVQ completed 2 weeks before contact with the ILVS and repeated 6 months later are summarised in Table 5.

There was a statistically significant increase in the number of patients who had read or tried to read ordinary print 6 months after their appointment with the low vision service compared with at their first interview. There was a significant decrease in the number of respondents who had read large print and shop prices/labels/tickets.

When interviewed 6 months after their appointment with the ILVS, 93% of patients had been prescribed an LVA. Approximately three quarters of interviewees stated that they had attempted using their prescribed LVAs for the following activities: reading ordinary sized print reading materials, reading their own correspondence, and reading instructions on packets, tins and medicines (Table 6).

At least half of those patients had found the LVAs quite helpful for performing these tasks (Table 7).

All of the low vision patients with one exception had used the LVA that they had been prescribed by the ILVS for at least one of the 19 activities listed in this section of the questionnaire.

Over half of those interviewed stated that they used their preferred LVA for reading several times each day but 10 patients (14%) never used their preferred LVA for reading (Table 8).

Approximately half of the patients used their preferred LVA to read for up to 30 minutes and a quarter of those interviewed were able to use their LVA for short periods of “spot reading” (Table 9).

VISION RELATED QOL

The results of the VCM1 before and 6 months after contact with the ILVS are shown in Table 10. There was a statistically significant reduction in concern in three particular areas after contact with the ILVS: fear of deterioration of vision, safety at home, and coping with everyday life.

No statistically significant differences were found between baseline VCM1 index scores of patients who had been seen by the ILVS before and those who had not (Table 11), or between those patients who lived alone and those who did not (Table 12).

DISCUSSION

While it would have been preferable to have interviewed only those patients who had never had contact with the ILVS before, this would have reduced the size of the study population and excluded many patients with more advanced eye disease. Of the 22% of participants who had had contact with the ILVS before this study, more than half had not been seen for at least a year, at a much earlier stage in the disease process. There was no statistically significant difference in vision related QOL as measured by baseline VCM1 index scores between patients who had been seen by the ILVS before and those who had not at the start of the study.

It was felt that following up patients 6 months after contact with the ILVs would allow sufficient time for them to acquire the independent living skills which are an integral part of the rehabilitation process without a significant deterioration in their visual pathology. Patients were re-interviewed face to face rather than by telephone, which has been shown by the researchers who developed the VCM1 to cause a general bias towards under-reporting.²⁷

A “restrictions in activities of daily living” questionnaire²⁴ was used to assess degree of difficulty patients experienced with task performance because of visual impairment. The majority of tasks with which patients reported most difficulty related to reading, which is consistent with the view that this is the principal handicap for most patients with visual impairment.⁸ However, the wide range of tasks attempted by most interviewees suggests that low vision rehabilitation should concentrate on improvement of all activities of daily living rather than simply sustained reading. Leat et al⁷ identify “survival or spot” reading tasks of limited duration as being vitally important to the visually impaired.

There was a significant increase in the number of patients who had read or tried to read ordinary print 6 months after their appointment with the ILVS compared with at their first interview. This was paralleled by a significant decrease in the number of respondents who had read large print, which implies that patients were using their LVAs successfully.

The mean patient index scores for vision related QOL issues indicated that the area of least concern for patients was safety within their own home and items provoking greatest concern were frustration and annoyance because of their poor sight and inability to carry out preferred activities. The use of a single index score has been recommended in QOL assessment,²⁸ although such scores are inevitably associated with a loss of information about more specific issues. The VCM1 score estimates patients’ degree of overall concern but does not determine the cause of concern. However, some causes may be highly specific to individual patients or may concern issues which escape inclusion in even longer questionnaires.

Comparison of the baseline VCM1 index score recorded for each patient in this study with a score generated 6 months after the patient’s encounter with the ILVS provided a useful measure of any changes in vision related QOL. The mean index scores for eight of the 10 categories were lower when patients were re-interviewed; the exceptions were feelings of loneliness and isolation and inability to carry out preferred activities because of poor eyesight. This resulted in a statistically significant decrease in total mean index score 5 months after contact with the ILVS, indicating a reduction in patients’ overall degree of concern. There was a statistically significant reduction in concern in three particular areas after contact with the ILVS: fear of deterioration of vision, safety at home, and coping with everyday life.

Patients were given information about their eye condition and visual prognosis by ILVS staff. ARMD is the most common diagnosis of patients attending ILVS clinics; 69% of the study group had this condition. The knowledge that ARMD causes central visual loss and not total blindness is reassuring for ARMD sufferers. It is also likely that rehabilitation support including optical and non-optical LVAs could result in patients feeling safer at home and able to cope better with everyday activities. The fact that patients may have had time to accept the deterioration in their vision during the 6 month period between the two interviews may be reflected in how they rated their visually related QOL. However, this could have been offset by the fact that many of the patients are likely to have experienced a worsening of their vision over the 6 month period.

Approximately half of those patients who participated in the study lived alone. Many interviewees commented that they felt lonely and isolated because of their poor vision but were afraid of leaving the familiar environment of their home to venture outside. However, no statistically significant differences were found between VCM1 index scores of patients living alone compared with those who lived with their spouse or other family members. This suggests that feelings of loneliness and isolation were not restricted to those participants who lived alone.

The concerns which were least affected by contact with the service were inability to carry out preferred activities because of failing vision and feelings of loneliness and isolation. In a study undertaken with partially sighted and blind people in 1998, loneliness was also identified as a particular problem.²⁹ In response to the findings of this study we have made social isolation a strategic priority for the ILVS and are arranging appropriate training for social services staff and volunteers to try to address the situation. Many rehabilitation services have reduced their emphasis on this area in favour of other aspects of rehabilitation. Our study would indicate that social isolation must now more than ever be tackled by services for people with low vision.

An example of a scheme already initiated by the ILVS is a new service whereby a group of volunteers offer “telecare” to clients who live alone. The volunteers make regular telephone calls to clients and are trained to pick up on key words that might suggest a change in circumstances. They can then refer relevant issues to professional staff.

This study highlighted the reading of packet instructions and medicine labels as a cause for frustration. The difficulty patients experience in reading medicine labels has been brought to the attention of the chief pharmacist in the area.

Since November 2000, the ILVS clinics have been held in a new sensory impairment centre where many agencies, including the local society for people with visual impairment, the deaf communication and audiology services, the Royal National Institute for the Blind, and several volunteer groups are based. The low vision clinic team now includes visually impaired volunteers who informally give information and support to patients attending the clinics. The greater collaboration now possible between the ILVS and the other agencies should improve support to people with low vision.