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Do patients with advanced glaucoma benefit from blind registration?
International Congress Series 1282 (2005) 307 – 311
www.ics-elsevier.com
Do patients with advanced glaucoma benefit from blind registration? A. Sinclaira,*, A. Hindsb, R. Sandersa a
Queen Margaret Hospital, Dunfermline, UK b Chief Scientist Office, Edinburgh, UK
Abstract. Aim: To examine the effectiveness of rehabilitation and social work services received by people in Fife, Scotland who were registered as blind with advanced glaucoma between 1990 and 1999. Method: From the blind register 115 patients were recorded as having a primary diagnosis of glaucoma. Records from 7 hospitals and also from the Fife Society for the Blind (FSB) were traced with an overall retrieval rate of 88%. Results: The average age at registration was 77 years. Rehabilitation and/or social workers from Fife Society for the Blind visited clients promptly after registration (average time 3.4 weeks) and were shown to have provided helpful support to 95% of those visited. An analysis of the types of support given showed that 71.3% were helped with independent living skills, 58.6% were given low vision aids, 54% had support with mobility issues, 51.7% received help to obtain financial benefit and 36.8% had social or emotional support of some kind. One third of those registered as blind could have been registered earlier and only 10% of patients were registered as partially sighted prior to blind registration. None were referred prior to registration. Conclusion: Patients with severe sight loss from glaucoma can benefit from the range of services which follow registration. We recommend that people with glaucoma are referred earlier to improve their access to benefits and to aid the rehabilitation process. D 2005 Elsevier B.V. All rights reserved. Keywords: Blind registration; Glaucoma; Rehabilitation
1. Introduction It has been shown in several studies that patients with sight loss involving primarily their field of vision are referred to social services later than those patients
* Corresponding author. Tel.: +44 1383 623623x8613. E-mail address: [email protected] (A. Sinclair). 0531-5131/ D 2005 Elsevier B.V. All rights reserved. doi:10.1016/j.ics.2005.05.017
308
A. Sinclair et al. / International Congress Series 1282 (2005) 307–311 N =87
40
males
females
35 30 25 no.of 20 patients 15 10 5 0 <20 20-29 30-39 40-49 50-59 60-69 70-79 80-89 90-99 age at registration
Fig. 1. Age and gender.
who lose visual acuity. It was shown by King et al. [1] that 57% of glaucoma outpatients eligible to be registered as partially sighted or blind remained unregistered. In common with Bunce et al. [2], this team also found that people who have field loss alone are less likely to be registered than people whose central visual acuity is impaired. Robinson et al. [3] found that people who are receiving ongoing treatment (for example, glaucoma patients) are less likely to be registered than those whose disease, particularly macular degeneration, may be untreatable. The study by Keefe et al. [4] showed that ophthalmologists were more inclined to refer their low vision patients for magnifiers than for rehabilitation services. Patients with advanced glaucoma may therefore be denied the benefits of referral and registration. In a previously published study, we examined the characteristics of the patients in Fife, Scotland, who were registered as blind with a main diagnosis of glaucoma between 1900 and 1999 [5]. In Fife, ophthalmologists and a nurse specialist work alongside social workers and rehabilitation workers from FSB to provide an integrated service which has been shown to improve some aspects of the quality of life of low vision patients in the area [6]. Because of this close working relationship, it was possible to analyse the support given by FSB to patients with
Table 1 Time taken for FSB to visit Time in weeks
No. of patients n = 44
1 2 3 4 5 6 7 16
3 13 10 7 5 3 2 1
(7%) (30%) (23%) (16%) (11%) (7%) (5%) (2%)
A. Sinclair et al. / International Congress Series 1282 (2005) 307–311
309
Table 2 Provision of rehabilitation and social work services Service provided by FSB
No. of clients
Independent living skills Low vision aids Mobility and travel Financial benefit Social and emotional support Unknown Nil
62 51 47 45 32 10 4
(71%) (59%) (54%) (52%) (37%) (11%) (5%)
advanced glaucoma. The details of this analysis have not previously been presented or published. 2. Methods For this study, only those patients who were registered as blind but not those registered as partially sighted in the period between 1st January 1990 and 31st December 1999 were selected. According to the register, 115 patients were registered blind with a primary diagnosis of glaucoma in this period. It was possible to retrieve hospital case notes for 85 of those 115 patients. Records were also obtained from FSB for 99 of the patients. Using both sources, information was obtained for 102 patients, an overall retrieval rate of 89%. When the hospital case notes were examined to confirm the diagnosis of each patient, 15 patients were excluded as having a primary diagnosis other than glaucoma. Demographic information was recorded for each patient including age and gender. The course of their disease and its management were recorded, including compliance with treatment. In addition, case notes and FSB files were examined for any evidence of mental health problems or hearing impairment at the time of referral or thereafter. Any subsequent registration information was obtained from the hospital records and FSB files. Information was gathered on any service provided by FSB, under the categories Table 3 Support with independent living skills
Talking books Talking newspaper Timekeeping Liquid indicator Kitchen aids O.T. referral Telephone Braille lessons Leisure activities Touch typing Lighting advice Coin holders Eye dropper
Number
%
52 27 29 17 11 9 8 5 4 3 3 2 1
(60) (31) (33) (20) (13) (10) (9) (6) (5) (3) (3) (2) (1)
310
A. Sinclair et al. / International Congress Series 1282 (2005) 307–311
Table 4 Low vision aids
Magnifiers UV shields Typoscopes CCTV Writing frame
Number
%
40 15 7 5 2
(46) (17) (8) (6) (2)
of independent living skills, mobility, low vision aids (provided by FSB to the patient at home or while attending the Interdisciplinary Low Vision Clinic), financial benefit or social/emotional support. 3. Results Fig. 1 shows the proportion of men and women and their age at registration. There were 45 men and 42 women. At the time of blind registration, the majority of patients were 70 years or older (72, 83%). Only 9 (10%) patients were registered as partially sighted prior to their blind registration. The hospital eye service did not refer any other patients to FSB prior to registering them as blind. However, 9 (10%) patients were referred to FSB by other professionals (including occupational therapists and social workers), and 8 (9%) were referred by family members or self-referred. For 29 (33%) patients, blind registration occurred some time after the eligibility criteria were met. The time lag between eligibility for blind registration and the time of registration ranged from 1 month to 9 years, with an average of 20 months. There was no evidence that registration had been offered but rejected by any of those patients. Two patients were registered before they actually met the criteria for registration, but did meet the criteria a few months later. Twenty (23%) patients were already receiving services from FSB at the time of registration. No information was available for 23 (26%) patients. The time from the date of the ophthalmologist signing the form to the date when FSB first Table 5 Mobility and travel
Car badge Symbol cane Travel pass Support Cane Long or guide cane
Number
%
29 17 10 5 5
(33) (20) (11) (6) (6)
Table 6 Financial benefit
Attendance allowance Income tax allowance Disability living allowance Housing application TV licence
Number
%
29 16 4 2 1
(33) (18) (5) (2) (1)
A. Sinclair et al. / International Congress Series 1282 (2005) 307–311
311
Table 7 Social and emotional support
Volunteer befriender Sport activities Social clubs Counselling Careers guidance
Number
%
14 3 15 7 1
(16) (3) (17) (8) (1)
made a home visit to carry out an assessment for the remaining 44 patients is shown in Table 1. The patient who waited 16 weeks had dementia and the family had declined services. Thirty-three (75%) of the 44 patients were seen within 4 weeks of registration. The services which FSB provided to patients are shown in Table 2. Many patients benefited from more than one category of service. Only 4 patients had no support. The detailed breakdown of the kinds of support provided to the clients of FSB are shown in Tables 3–7.
4. Summary Ophthalmologists may have the impression that, with some remaining central visual acuity, patients with glaucoma have less need of registration and would have less to gain by being registered. As ophthalmologists often associate rehabilitation purely with the provision of low vision aids, the fact that a patient may be able to perform adequately on visual acuity testing may contribute to their reluctance to offer registration or to their delay in registering patients. It is therefore significant that FSB were able to provide assistance of some kind to 95% of patients. Many patients obtained benefit from all five possible categories of service provided, namely independent living skills, low vision aids, mobility and travel, financial benefit and social and emotional support. This study would suggest that, far from being a category of people who might not benefit from social work services support, patients with advanced glaucoma have a great deal to gain from being registered as blind. References [1] A.J.W. King, et al., The rates of blindness and partial sight registration in glaucoma patients, Eye 14 (2000) 613 – 619. [2] C. Bunce, et al., BD8 certification of visually impaired people, Br. J. Ophthalmol. 82 (1998) 72 – 76. [3] R. Robinson, et al., Unrecognised and unregistered visual impairment, Br. J. Ophthalmol. 78 (1994) 736 – 740. [4] J.E. Keefe, J.E. Lovie-Kitchen, H.R. Taylor, Referral to low-vision services by ophthalmologists, Aust. N. Z. J. Ophtalmol. 24 (1996) 207 – 214. [5] A. Hinds, et al., The impact of an interdisciplinary low vision service on the quality of life of low vision patients, Br. J. Ophthalmol. 87 (2003) 1391 – 1396. [6] A. Sinclair, et al., Ten years of glaucoma blindness in Fife 1990–1999 and the implications for ophthalmology, optometry and rehabilitation services, Ophthalmic Physiol. Opt. 24 (2004) 313 – 318.
www.ics-elsevier.com
Do patients with advanced glaucoma benefit from blind registration? A. Sinclaira,*, A. Hindsb, R. Sandersa a
Queen Margaret Hospital, Dunfermline, UK b Chief Scientist Office, Edinburgh, UK
Abstract. Aim: To examine the effectiveness of rehabilitation and social work services received by people in Fife, Scotland who were registered as blind with advanced glaucoma between 1990 and 1999. Method: From the blind register 115 patients were recorded as having a primary diagnosis of glaucoma. Records from 7 hospitals and also from the Fife Society for the Blind (FSB) were traced with an overall retrieval rate of 88%. Results: The average age at registration was 77 years. Rehabilitation and/or social workers from Fife Society for the Blind visited clients promptly after registration (average time 3.4 weeks) and were shown to have provided helpful support to 95% of those visited. An analysis of the types of support given showed that 71.3% were helped with independent living skills, 58.6% were given low vision aids, 54% had support with mobility issues, 51.7% received help to obtain financial benefit and 36.8% had social or emotional support of some kind. One third of those registered as blind could have been registered earlier and only 10% of patients were registered as partially sighted prior to blind registration. None were referred prior to registration. Conclusion: Patients with severe sight loss from glaucoma can benefit from the range of services which follow registration. We recommend that people with glaucoma are referred earlier to improve their access to benefits and to aid the rehabilitation process. D 2005 Elsevier B.V. All rights reserved. Keywords: Blind registration; Glaucoma; Rehabilitation
1. Introduction It has been shown in several studies that patients with sight loss involving primarily their field of vision are referred to social services later than those patients
* Corresponding author. Tel.: +44 1383 623623x8613. E-mail address: [email protected] (A. Sinclair). 0531-5131/ D 2005 Elsevier B.V. All rights reserved. doi:10.1016/j.ics.2005.05.017
308
A. Sinclair et al. / International Congress Series 1282 (2005) 307–311 N =87
40
males
females
35 30 25 no.of 20 patients 15 10 5 0 <20 20-29 30-39 40-49 50-59 60-69 70-79 80-89 90-99 age at registration
Fig. 1. Age and gender.
who lose visual acuity. It was shown by King et al. [1] that 57% of glaucoma outpatients eligible to be registered as partially sighted or blind remained unregistered. In common with Bunce et al. [2], this team also found that people who have field loss alone are less likely to be registered than people whose central visual acuity is impaired. Robinson et al. [3] found that people who are receiving ongoing treatment (for example, glaucoma patients) are less likely to be registered than those whose disease, particularly macular degeneration, may be untreatable. The study by Keefe et al. [4] showed that ophthalmologists were more inclined to refer their low vision patients for magnifiers than for rehabilitation services. Patients with advanced glaucoma may therefore be denied the benefits of referral and registration. In a previously published study, we examined the characteristics of the patients in Fife, Scotland, who were registered as blind with a main diagnosis of glaucoma between 1900 and 1999 [5]. In Fife, ophthalmologists and a nurse specialist work alongside social workers and rehabilitation workers from FSB to provide an integrated service which has been shown to improve some aspects of the quality of life of low vision patients in the area [6]. Because of this close working relationship, it was possible to analyse the support given by FSB to patients with
Table 1 Time taken for FSB to visit Time in weeks
No. of patients n = 44
1 2 3 4 5 6 7 16
3 13 10 7 5 3 2 1
(7%) (30%) (23%) (16%) (11%) (7%) (5%) (2%)
A. Sinclair et al. / International Congress Series 1282 (2005) 307–311
309
Table 2 Provision of rehabilitation and social work services Service provided by FSB
No. of clients
Independent living skills Low vision aids Mobility and travel Financial benefit Social and emotional support Unknown Nil
62 51 47 45 32 10 4
(71%) (59%) (54%) (52%) (37%) (11%) (5%)
advanced glaucoma. The details of this analysis have not previously been presented or published. 2. Methods For this study, only those patients who were registered as blind but not those registered as partially sighted in the period between 1st January 1990 and 31st December 1999 were selected. According to the register, 115 patients were registered blind with a primary diagnosis of glaucoma in this period. It was possible to retrieve hospital case notes for 85 of those 115 patients. Records were also obtained from FSB for 99 of the patients. Using both sources, information was obtained for 102 patients, an overall retrieval rate of 89%. When the hospital case notes were examined to confirm the diagnosis of each patient, 15 patients were excluded as having a primary diagnosis other than glaucoma. Demographic information was recorded for each patient including age and gender. The course of their disease and its management were recorded, including compliance with treatment. In addition, case notes and FSB files were examined for any evidence of mental health problems or hearing impairment at the time of referral or thereafter. Any subsequent registration information was obtained from the hospital records and FSB files. Information was gathered on any service provided by FSB, under the categories Table 3 Support with independent living skills
Talking books Talking newspaper Timekeeping Liquid indicator Kitchen aids O.T. referral Telephone Braille lessons Leisure activities Touch typing Lighting advice Coin holders Eye dropper
Number
%
52 27 29 17 11 9 8 5 4 3 3 2 1
(60) (31) (33) (20) (13) (10) (9) (6) (5) (3) (3) (2) (1)
310
A. Sinclair et al. / International Congress Series 1282 (2005) 307–311
Table 4 Low vision aids
Magnifiers UV shields Typoscopes CCTV Writing frame
Number
%
40 15 7 5 2
(46) (17) (8) (6) (2)
of independent living skills, mobility, low vision aids (provided by FSB to the patient at home or while attending the Interdisciplinary Low Vision Clinic), financial benefit or social/emotional support. 3. Results Fig. 1 shows the proportion of men and women and their age at registration. There were 45 men and 42 women. At the time of blind registration, the majority of patients were 70 years or older (72, 83%). Only 9 (10%) patients were registered as partially sighted prior to their blind registration. The hospital eye service did not refer any other patients to FSB prior to registering them as blind. However, 9 (10%) patients were referred to FSB by other professionals (including occupational therapists and social workers), and 8 (9%) were referred by family members or self-referred. For 29 (33%) patients, blind registration occurred some time after the eligibility criteria were met. The time lag between eligibility for blind registration and the time of registration ranged from 1 month to 9 years, with an average of 20 months. There was no evidence that registration had been offered but rejected by any of those patients. Two patients were registered before they actually met the criteria for registration, but did meet the criteria a few months later. Twenty (23%) patients were already receiving services from FSB at the time of registration. No information was available for 23 (26%) patients. The time from the date of the ophthalmologist signing the form to the date when FSB first Table 5 Mobility and travel
Car badge Symbol cane Travel pass Support Cane Long or guide cane
Number
%
29 17 10 5 5
(33) (20) (11) (6) (6)
Table 6 Financial benefit
Attendance allowance Income tax allowance Disability living allowance Housing application TV licence
Number
%
29 16 4 2 1
(33) (18) (5) (2) (1)
A. Sinclair et al. / International Congress Series 1282 (2005) 307–311
311
Table 7 Social and emotional support
Volunteer befriender Sport activities Social clubs Counselling Careers guidance
Number
%
14 3 15 7 1
(16) (3) (17) (8) (1)
made a home visit to carry out an assessment for the remaining 44 patients is shown in Table 1. The patient who waited 16 weeks had dementia and the family had declined services. Thirty-three (75%) of the 44 patients were seen within 4 weeks of registration. The services which FSB provided to patients are shown in Table 2. Many patients benefited from more than one category of service. Only 4 patients had no support. The detailed breakdown of the kinds of support provided to the clients of FSB are shown in Tables 3–7.
4. Summary Ophthalmologists may have the impression that, with some remaining central visual acuity, patients with glaucoma have less need of registration and would have less to gain by being registered. As ophthalmologists often associate rehabilitation purely with the provision of low vision aids, the fact that a patient may be able to perform adequately on visual acuity testing may contribute to their reluctance to offer registration or to their delay in registering patients. It is therefore significant that FSB were able to provide assistance of some kind to 95% of patients. Many patients obtained benefit from all five possible categories of service provided, namely independent living skills, low vision aids, mobility and travel, financial benefit and social and emotional support. This study would suggest that, far from being a category of people who might not benefit from social work services support, patients with advanced glaucoma have a great deal to gain from being registered as blind. References [1] A.J.W. King, et al., The rates of blindness and partial sight registration in glaucoma patients, Eye 14 (2000) 613 – 619. [2] C. Bunce, et al., BD8 certification of visually impaired people, Br. J. Ophthalmol. 82 (1998) 72 – 76. [3] R. Robinson, et al., Unrecognised and unregistered visual impairment, Br. J. Ophthalmol. 78 (1994) 736 – 740. [4] J.E. Keefe, J.E. Lovie-Kitchen, H.R. Taylor, Referral to low-vision services by ophthalmologists, Aust. N. Z. J. Ophtalmol. 24 (1996) 207 – 214. [5] A. Hinds, et al., The impact of an interdisciplinary low vision service on the quality of life of low vision patients, Br. J. Ophthalmol. 87 (2003) 1391 – 1396. [6] A. Sinclair, et al., Ten years of glaucoma blindness in Fife 1990–1999 and the implications for ophthalmology, optometry and rehabilitation services, Ophthalmic Physiol. Opt. 24 (2004) 313 – 318.