- Email: [email protected]
Focus-QoL: Measuring quality of life in low vision
International Congress Series 1282 (2005) 549 – 553
www.ics-elsevier.com
Focus-QoL: Measuring quality of life in low vision Fiona Fylana,*, Anita Morrison-Fokkenb, Elizabeth A. Grunfeldc a
Seebohm Rowntree Area 4, Department of Health Sciences, University of York, YO10 5DD, United Kingdom b Low Vision Centre, Birmingham Focus on Blindness, United Kingdom c Institute of Psychiatry, Department of Psychology, Guy’s Hospital, United Kingdom
Abstract. Low vision can have a profound impact on quality of life, affecting mobility, day-to-day visual tasks, social functioning, and psychological wellbeing. Existing quality of life measures used in low vision tend to concentrate on visual function at the expense of psychosocial adjustment. We report the development of a new measure of quality of life in low vision. Focus groups were held with low vision centre staff and clients to explore the areas that affect quality of life in people with low vision. A content analysis was used to develop a 25-item questionnaire and a client priorities form. Questionnaires were posted to a random sample of 200 clients, and completed with 72 consecutive clients in a low vision clinic. Principal component analysis identified three factors: the ability to carry out day-to-day tasks; independence; and motivation. The measure can be analysed as a single scale with scores ranging from 0 to 100 and higher scores indicating better quality of life. Clients had the most difficulty with reading books, newspapers and letters, using public transport, and engaging in hobbies or leisure activities. Clients also reported a lack of confidence, feeling worried about doing something embarrassing, and staying at home because of their eyesight. FocusQoL is a brief measure of quality of life, and combined with the client priorities form, it could help low vision service providers target resources to best meet individual client needs. D 2005 Elsevier B.V. All rights reserved. Keywords: Quality of life; Low vision; Visual impairment; Visual function; Psychological wellbeing
1. Introduction Low vision can have a profound impact on quality of life [1]. Low vision restricts the activities that people can engage in, particularly for reading, getting around outside the
* Corresponding author. Tel.: +44 1904 321380; fax: +44 1904 321388. E-mail address: [email protected] (F. Fylan). 0531-5131/ D 2005 Elsevier B.V. All rights reserved. doi:10.1016/j.ics.2005.05.043
550
F. Fylan et al. / International Congress Series 1282 (2005) 549–553
home, and participating in leisure activities [2]. For example, people with age-related macular degeneration (AMD) report difficulties in shopping, managing money, preparing meals, performing housework, and using the telephone [3]. They also show increased emotional distress over levels present in the normal population, equivalent to those with serious and life-threatening diseases, such as AIDS and melanoma [3]. Poor visual function is also associated with depression [4], loneliness and anxiety [5], worry and frustration [6]. Low vision centres typically aim to help people with low vision maintain their independence by achieving best possible use of their residual vision. The majority of clients are elderly and have a range of eye conditions, one of the most predominant being AMD. Some centres also provide services to children and young adults with low vision. Helping people make a good psychosocial adjustment to living with low vision is increasingly recognised as a key area for low vision centres to address. To evaluate the impact of such work, it is important to measure quality of life. As centres typically have clients with a range of ages and conditions, it is important to identify – from each client’s perspective – the most important areas of visual function upon which to concentrate training and rehabilitation efforts. There are several existing questionnaires examining quality of life specifically in people with low vision. These include the Activities of Daily Living Scale [7], the VF-14 [8], and the LVQOL [9]. Such questionnaires tend to focus on functional difficulties such as reading, watching television, and sewing. These difficulties are important because they can impact on various aspects of the individual’s functioning and so impair quality of life. However, not all the questions are relevant, for example, only a minority of people with AMD report that all VF-14 items are relevant to them [10]. Furthermore, the social and psychological components of quality of life are rarely covered in detail. We concluded that none of the existing measures were suitable for routine quality of life assessments in low vision clinics and that we would therefore develop a new measure. This would assess the ability to use residual vision for daily activities, the ability to participate in social activities, and psychological wellbeing. To this end, focus groups were held with clients and staff to explore the areas perceived as being important when assessing quality of life, and items which would be important to include in the measure (Section 2). A questionnaire was developed and a quality of life survey was undertaken with the measure. Its factor structure, and the results from the quality of life survey, are reported in Section 3. 2. What areas are important to include in an assessment of quality of life? 2.1. Methods Focus group schedules were developed to explore the areas that affect quality of life in people with low vision and the ways in which low vision centres could help clients make better use of their residual vision. The schedule also included discussion of items from existing quality of life measures, and areas participants thought were missing. Six groups were undertaken: two with staff and four with clients. The staff focus groups comprised five people, including one with low vision. A total of 27 clients took part: fourteen were female and thirteen were male, and ages ranged from 21 to 87. Pathologies included agerelated macular degeneration, glaucoma, and retinitis pigmentosa.
F. Fylan et al. / International Congress Series 1282 (2005) 549–553
551
In addition to the standard schedule topics, the staff focus groups also included discussion of the practicalities of completing a quality of life questionnaire during clinic appointments. Each participant gave informed consent to take part. 2.2. Results Analysis of the focus groups revealed eight themes: Independence; Safety; Isolation; Confidence; Hassles; Employment; Loss; Information. Clients in every focus group identified psychological and social functioning as being a central part of quality of life in people with low vision. While many of the themes, such as independence (e.g., difficulties reading post) are contained in other quality of life measures, several themes concerned with the psychological processes, such as loss (e.g., of the future), confidence (e.g., morale), and employment (e.g., discrimination) are not addressed in sufficient detail. A valid measure for low vision centre clients should assess psychological wellbeing, social functioning, day-to-day vision, and the consequences of visual loss such as lack of employment, and isolation. Discussions within the staff focus groups highlighted the need for the questionnaire to be quick to complete and easy to interpret. 3. Focus-QoL questionnaire and survey 3.1. Methods The questionnaire developed in Study 1 comprises 25 items. Seventeen items assessed the ability to carry out day-to-day activities such as reading post and newspapers; manage personal care such as picking clothes and styling hair; participate in leisure and social activities; and negotiate the environment safely. The final eight items assessed the respondent’s psychological well being, including their happiness, motivation and confidence. Possible scores range from 0 to 100, with higher scores indicating better quality of life. The questionnaire also contains a client priorities section, which invites client and optometrist to identify up to three target areas for rehabilitation training. The questionnaire was mailed to 200 randomly selected clients, and was completed as part of the clinic assessment for 72 consecutive clients. Ages ranged from 6 (completed by parent) to 85, and clients had a range of conditions including AMD, cataracts, glaucoma and diabetic retinopathy. To examine test–retest reliability, a second copy of the FocusQoL was sent to a subset of 80 of the postal survey participants between 4 and 6 weeks after the first questionnaire. 3.2. Results: factor structure 100 questionnaires were returned from the first postal survey and 49 from the second. The scale showed good reliability and high internal consistency (Cronbachs’ alpha = 0.96). The scree plot indicated that the questionnaire can be analysed in either a single scale or in three separate sub-scales. The first factor accounted for 33% of the variance, and the first three factors accounted for 50%. We named the factors day-to-day tasks, independence, and motivation. The items that make up these factors are shown Fig. 1 in orange, grey and green respectively.
552
F. Fylan et al. / International Congress Series 1282 (2005) 549–553
A
Reading post and letters Finding things on a crowded shelf Reading books and newspapers Picking clothes Shaving, hair and make up Household tasks Reading signs Visiting somewhere new Safety inside the home Safety outside the home Obtaining information Meeting friends Attending social events Public transport Working Hobbies Watching TV 0 Do not do
1 2 Extreme Moderate difficulty Difficulty
3 4 A little No difficulty difficulty
Motivated
B
Happy Confident I stay at home* Frustrated* Worry - embarrassing I have less control*
*Reversed scored
I rely on other people* 0 1 Never Hardly Ever
2 Often
3 Usually
4 Always
Fig. 1. Mean item scores for Focus-QoL items for visual tasks (A) and psychological wellbeing (B). For items in panel (A), respondents have the option of bdo not do because of my eyesightQ and bdo not do for other reasonsQ. The latter is excluded from the total quality of life score. Orange bars indicate items within the day-to-day vision factor, grey bars the independence factor, and green bars the motivation.
3.3. Results: quality of life survey Quality of life scores ranged between 7 and 98, with a mean of 55 and a standard deviation of 18.6. Mean scores from individual items are shown in Fig. 1 for visual tasks (A) and psychological wellbeing (B). Clients had the most difficulty with reading books and newspapers, reading letters, using public transport and engaging in leisure activities. Respondents reported feeling happy, but many reported lack of confidence, staying at
F. Fylan et al. / International Congress Series 1282 (2005) 549–553
553
home because of their eyesight, and worrying that they might do something embarrassing. The most common priority areas identified were reading, watching TV, using public transport, shopping, and hobbies such as jigsaws, sewing, and gardening. 4. Discussion We have developed a quality of life measure suitable for use in low vision clinics that provides an assessment of visual functioning and psychosocial wellbeing. The measure can be analysed as a single scale with scores ranging from 0 to 100; higher scores indicating better quality of life. The three factors identified with principal component analysis (day-to-day tasks, independence, and motivation) highlight the importance of addressing psychological needs for successful adaptation to living with low vision. The core measure is supplemented by a subjective client priorities section, completed as part of the low vision assessment, which gives a client-centred measure of the difficulty with which tasks important to the client can be performed. It is important that selection of priority areas is undertaken with input from both client and optometrist, as the areas should be selected on the basis of both importance to the client, and also the likelihood that the area might realistically be expected to show some improvement with low vision rehabilitation or training. As it is becoming increasingly important to evaluate the effectiveness of low vision services [11], the Focus-QoL could provide a useful audit tool. The core part of the tool could be used to evaluate the impact that the service has on quality of life, and the priorities section could be used to track the progress of individual clients on areas that are important to them, and better target resources to areas that are most important to clients. References [1] S.K. West, et al., How does visual impairment affect performance on tasks of everyday life? The SEE Project. Arch. Ophthalmol. 120 (2002) 774–780. [2] E.L. Lamoureux, J.B. Hassell, J.E. Keefe, The determinants of participation in activities of daily living in people with impaired vision, Am. J. Ophthalmol. 137 (2004) 265 – 270. [3] R.A. Williams, et al., The psychosocial impact of macular degeneration. Arch. Ophthalmol. 116 (1998) 514–520. [4] S.H. Paz, et al., Relationship between self-reported depression and self-reported visual function in Latinos, Arch. Ophthalmol. 121 (2003) 1021 – 1027. [5] R. Harper, et al., Evaluating the outcomes of low vision rehabilitation, Ophthalmic Physiol. Opt. 19 (1998) 3 – 11. [6] K. Scilley, C. Owsley, Vision-specific quality of life: content areas for nursing home residents, Qual. Life Res. 11 (2002) 449 – 462. [7] C.M. Mangione, et al., Development of the activities of daily vision scale; a measure of visual functional status, Med. Care 30 (1992) 1111 – 1126. [8] E.P. Steinberg, et al., The VF-14: an index of functional impairment in patients with cataract, Arch. Ophthalmol. 115 (1994) 777 – 784. [9] J.S. Wolffsohn, A.L. Cochrane, Design of the low vision quality of life questionnaire (LVQOL) and measuring the outcome of low vision rehabilitation, Am. J. Ophthalmol. 130 (2000) 793 – 802. [10] P.J. Mackenzie, et al., Assessment of vision-related function in patients with age-related macular degeneration, Ophthalmology 109 (2002) 720 – 729. [11] J. Lindsay, et al., Low vision service delivery: an audit of newly developed outreach clinics in Northern Ireland, Ophthalmol. Phys. Opt. 24 (2004) 360 – 368.
www.ics-elsevier.com
Focus-QoL: Measuring quality of life in low vision Fiona Fylana,*, Anita Morrison-Fokkenb, Elizabeth A. Grunfeldc a
Seebohm Rowntree Area 4, Department of Health Sciences, University of York, YO10 5DD, United Kingdom b Low Vision Centre, Birmingham Focus on Blindness, United Kingdom c Institute of Psychiatry, Department of Psychology, Guy’s Hospital, United Kingdom
Abstract. Low vision can have a profound impact on quality of life, affecting mobility, day-to-day visual tasks, social functioning, and psychological wellbeing. Existing quality of life measures used in low vision tend to concentrate on visual function at the expense of psychosocial adjustment. We report the development of a new measure of quality of life in low vision. Focus groups were held with low vision centre staff and clients to explore the areas that affect quality of life in people with low vision. A content analysis was used to develop a 25-item questionnaire and a client priorities form. Questionnaires were posted to a random sample of 200 clients, and completed with 72 consecutive clients in a low vision clinic. Principal component analysis identified three factors: the ability to carry out day-to-day tasks; independence; and motivation. The measure can be analysed as a single scale with scores ranging from 0 to 100 and higher scores indicating better quality of life. Clients had the most difficulty with reading books, newspapers and letters, using public transport, and engaging in hobbies or leisure activities. Clients also reported a lack of confidence, feeling worried about doing something embarrassing, and staying at home because of their eyesight. FocusQoL is a brief measure of quality of life, and combined with the client priorities form, it could help low vision service providers target resources to best meet individual client needs. D 2005 Elsevier B.V. All rights reserved. Keywords: Quality of life; Low vision; Visual impairment; Visual function; Psychological wellbeing
1. Introduction Low vision can have a profound impact on quality of life [1]. Low vision restricts the activities that people can engage in, particularly for reading, getting around outside the
* Corresponding author. Tel.: +44 1904 321380; fax: +44 1904 321388. E-mail address: [email protected] (F. Fylan). 0531-5131/ D 2005 Elsevier B.V. All rights reserved. doi:10.1016/j.ics.2005.05.043
550
F. Fylan et al. / International Congress Series 1282 (2005) 549–553
home, and participating in leisure activities [2]. For example, people with age-related macular degeneration (AMD) report difficulties in shopping, managing money, preparing meals, performing housework, and using the telephone [3]. They also show increased emotional distress over levels present in the normal population, equivalent to those with serious and life-threatening diseases, such as AIDS and melanoma [3]. Poor visual function is also associated with depression [4], loneliness and anxiety [5], worry and frustration [6]. Low vision centres typically aim to help people with low vision maintain their independence by achieving best possible use of their residual vision. The majority of clients are elderly and have a range of eye conditions, one of the most predominant being AMD. Some centres also provide services to children and young adults with low vision. Helping people make a good psychosocial adjustment to living with low vision is increasingly recognised as a key area for low vision centres to address. To evaluate the impact of such work, it is important to measure quality of life. As centres typically have clients with a range of ages and conditions, it is important to identify – from each client’s perspective – the most important areas of visual function upon which to concentrate training and rehabilitation efforts. There are several existing questionnaires examining quality of life specifically in people with low vision. These include the Activities of Daily Living Scale [7], the VF-14 [8], and the LVQOL [9]. Such questionnaires tend to focus on functional difficulties such as reading, watching television, and sewing. These difficulties are important because they can impact on various aspects of the individual’s functioning and so impair quality of life. However, not all the questions are relevant, for example, only a minority of people with AMD report that all VF-14 items are relevant to them [10]. Furthermore, the social and psychological components of quality of life are rarely covered in detail. We concluded that none of the existing measures were suitable for routine quality of life assessments in low vision clinics and that we would therefore develop a new measure. This would assess the ability to use residual vision for daily activities, the ability to participate in social activities, and psychological wellbeing. To this end, focus groups were held with clients and staff to explore the areas perceived as being important when assessing quality of life, and items which would be important to include in the measure (Section 2). A questionnaire was developed and a quality of life survey was undertaken with the measure. Its factor structure, and the results from the quality of life survey, are reported in Section 3. 2. What areas are important to include in an assessment of quality of life? 2.1. Methods Focus group schedules were developed to explore the areas that affect quality of life in people with low vision and the ways in which low vision centres could help clients make better use of their residual vision. The schedule also included discussion of items from existing quality of life measures, and areas participants thought were missing. Six groups were undertaken: two with staff and four with clients. The staff focus groups comprised five people, including one with low vision. A total of 27 clients took part: fourteen were female and thirteen were male, and ages ranged from 21 to 87. Pathologies included agerelated macular degeneration, glaucoma, and retinitis pigmentosa.
F. Fylan et al. / International Congress Series 1282 (2005) 549–553
551
In addition to the standard schedule topics, the staff focus groups also included discussion of the practicalities of completing a quality of life questionnaire during clinic appointments. Each participant gave informed consent to take part. 2.2. Results Analysis of the focus groups revealed eight themes: Independence; Safety; Isolation; Confidence; Hassles; Employment; Loss; Information. Clients in every focus group identified psychological and social functioning as being a central part of quality of life in people with low vision. While many of the themes, such as independence (e.g., difficulties reading post) are contained in other quality of life measures, several themes concerned with the psychological processes, such as loss (e.g., of the future), confidence (e.g., morale), and employment (e.g., discrimination) are not addressed in sufficient detail. A valid measure for low vision centre clients should assess psychological wellbeing, social functioning, day-to-day vision, and the consequences of visual loss such as lack of employment, and isolation. Discussions within the staff focus groups highlighted the need for the questionnaire to be quick to complete and easy to interpret. 3. Focus-QoL questionnaire and survey 3.1. Methods The questionnaire developed in Study 1 comprises 25 items. Seventeen items assessed the ability to carry out day-to-day activities such as reading post and newspapers; manage personal care such as picking clothes and styling hair; participate in leisure and social activities; and negotiate the environment safely. The final eight items assessed the respondent’s psychological well being, including their happiness, motivation and confidence. Possible scores range from 0 to 100, with higher scores indicating better quality of life. The questionnaire also contains a client priorities section, which invites client and optometrist to identify up to three target areas for rehabilitation training. The questionnaire was mailed to 200 randomly selected clients, and was completed as part of the clinic assessment for 72 consecutive clients. Ages ranged from 6 (completed by parent) to 85, and clients had a range of conditions including AMD, cataracts, glaucoma and diabetic retinopathy. To examine test–retest reliability, a second copy of the FocusQoL was sent to a subset of 80 of the postal survey participants between 4 and 6 weeks after the first questionnaire. 3.2. Results: factor structure 100 questionnaires were returned from the first postal survey and 49 from the second. The scale showed good reliability and high internal consistency (Cronbachs’ alpha = 0.96). The scree plot indicated that the questionnaire can be analysed in either a single scale or in three separate sub-scales. The first factor accounted for 33% of the variance, and the first three factors accounted for 50%. We named the factors day-to-day tasks, independence, and motivation. The items that make up these factors are shown Fig. 1 in orange, grey and green respectively.
552
F. Fylan et al. / International Congress Series 1282 (2005) 549–553
A
Reading post and letters Finding things on a crowded shelf Reading books and newspapers Picking clothes Shaving, hair and make up Household tasks Reading signs Visiting somewhere new Safety inside the home Safety outside the home Obtaining information Meeting friends Attending social events Public transport Working Hobbies Watching TV 0 Do not do
1 2 Extreme Moderate difficulty Difficulty
3 4 A little No difficulty difficulty
Motivated
B
Happy Confident I stay at home* Frustrated* Worry - embarrassing I have less control*
*Reversed scored
I rely on other people* 0 1 Never Hardly Ever
2 Often
3 Usually
4 Always
Fig. 1. Mean item scores for Focus-QoL items for visual tasks (A) and psychological wellbeing (B). For items in panel (A), respondents have the option of bdo not do because of my eyesightQ and bdo not do for other reasonsQ. The latter is excluded from the total quality of life score. Orange bars indicate items within the day-to-day vision factor, grey bars the independence factor, and green bars the motivation.
3.3. Results: quality of life survey Quality of life scores ranged between 7 and 98, with a mean of 55 and a standard deviation of 18.6. Mean scores from individual items are shown in Fig. 1 for visual tasks (A) and psychological wellbeing (B). Clients had the most difficulty with reading books and newspapers, reading letters, using public transport and engaging in leisure activities. Respondents reported feeling happy, but many reported lack of confidence, staying at
F. Fylan et al. / International Congress Series 1282 (2005) 549–553
553
home because of their eyesight, and worrying that they might do something embarrassing. The most common priority areas identified were reading, watching TV, using public transport, shopping, and hobbies such as jigsaws, sewing, and gardening. 4. Discussion We have developed a quality of life measure suitable for use in low vision clinics that provides an assessment of visual functioning and psychosocial wellbeing. The measure can be analysed as a single scale with scores ranging from 0 to 100; higher scores indicating better quality of life. The three factors identified with principal component analysis (day-to-day tasks, independence, and motivation) highlight the importance of addressing psychological needs for successful adaptation to living with low vision. The core measure is supplemented by a subjective client priorities section, completed as part of the low vision assessment, which gives a client-centred measure of the difficulty with which tasks important to the client can be performed. It is important that selection of priority areas is undertaken with input from both client and optometrist, as the areas should be selected on the basis of both importance to the client, and also the likelihood that the area might realistically be expected to show some improvement with low vision rehabilitation or training. As it is becoming increasingly important to evaluate the effectiveness of low vision services [11], the Focus-QoL could provide a useful audit tool. The core part of the tool could be used to evaluate the impact that the service has on quality of life, and the priorities section could be used to track the progress of individual clients on areas that are important to them, and better target resources to areas that are most important to clients. References [1] S.K. West, et al., How does visual impairment affect performance on tasks of everyday life? The SEE Project. Arch. Ophthalmol. 120 (2002) 774–780. [2] E.L. Lamoureux, J.B. Hassell, J.E. Keefe, The determinants of participation in activities of daily living in people with impaired vision, Am. J. Ophthalmol. 137 (2004) 265 – 270. [3] R.A. Williams, et al., The psychosocial impact of macular degeneration. Arch. Ophthalmol. 116 (1998) 514–520. [4] S.H. Paz, et al., Relationship between self-reported depression and self-reported visual function in Latinos, Arch. Ophthalmol. 121 (2003) 1021 – 1027. [5] R. Harper, et al., Evaluating the outcomes of low vision rehabilitation, Ophthalmic Physiol. Opt. 19 (1998) 3 – 11. [6] K. Scilley, C. Owsley, Vision-specific quality of life: content areas for nursing home residents, Qual. Life Res. 11 (2002) 449 – 462. [7] C.M. Mangione, et al., Development of the activities of daily vision scale; a measure of visual functional status, Med. Care 30 (1992) 1111 – 1126. [8] E.P. Steinberg, et al., The VF-14: an index of functional impairment in patients with cataract, Arch. Ophthalmol. 115 (1994) 777 – 784. [9] J.S. Wolffsohn, A.L. Cochrane, Design of the low vision quality of life questionnaire (LVQOL) and measuring the outcome of low vision rehabilitation, Am. J. Ophthalmol. 130 (2000) 793 – 802. [10] P.J. Mackenzie, et al., Assessment of vision-related function in patients with age-related macular degeneration, Ophthalmology 109 (2002) 720 – 729. [11] J. Lindsay, et al., Low vision service delivery: an audit of newly developed outreach clinics in Northern Ireland, Ophthalmol. Phys. Opt. 24 (2004) 360 – 368.