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Age-related macular degeneration: diagnosis and management. London: National Institute for Health and Care Excellence (NICE); 2018 Jan. (NICE Guideline, No. 82.)
AMD is the most common cause of vision loss in older adults. When a person is suspected of having or has been diagnosed with AMD it is important that they and their family members, or carers, understand how it will affect their lives. Good support and information for both the patient and family members can contribute towards better patient outcomes and can help optimise quality of life.
Given the progressive nature of the disease and the different disease stages the information given will depend upon the stage of progression of AMD, the recommended treatment and any other illnesses/conditions the patient may have. They will want to know how they can look after their eyes and should be made aware of what to do if their vision changes.
Being diagnosed with AMD is distressing for patients and their family members or carers. Many will have little or no knowledge of AMD before they are diagnosed with it. They are likely to feel confusion, be fearful of the future and be anxious about treatment, for example about having injections into their eye. They will need reassurance and support.
This chapter will review for available evidence to identify the barriers and facilitators to treatment adherence and the information needs of people with AMD, their families and carers.
12.1. Barriers and facilitators to appointment attendance and uptake of treatment for people with AMD
Review question:
- What are the barriers and facilitators to appointment attendance and uptake of treatment for people with AMD?
12.1.1. Evidence review
The aim of the review was to understand the barriers and facilitators to appointment attendance and uptake of treatment for people being treated for AMD from their own perspectives through their experiences of people. The review focused on identifying studies that fulfilled the conditions specified in Table 61. For full details of the review protocol, see Appendix C.
Table 61
PICO table - barriers and facilitators to adherence of appointment and treatment for people with AMD.
Qualitative studies and systematic review of qualitative studies were included if they explored barriers and facilitators to appointment attendance and update of treatment for people with AMD. If there was insufficient qualitative evidence, quantitative studies (survey studies) were included. Evidence from qualitative studies was initially rated as high quality, and evidence from quantitative observational studies was initially rated as low quality, with the quality of the evidence for each theme/outcome downgraded or not from these points. Papers were excluded if they:
- did not include people who are being treated for AMD
- were not in English language
- were abstracts, conference proceedings and other unpublished studies.
12.1.1.1. Description of included studies
A total of 3,707 references were identified through a systematic search. References were screened on their titles and abstracts and the full texts of 51 references that were potentially relevant to the review question were screened on full-text. Ten studies including 3 qualitative studies exploring experiences of patients with AMD and 7 quantitative studies (cross-sectional surveys) examining the reasons for dropout and discontinuation of treatments or follow-up visits were included in the review. A detailed list of excluded studies and reasons for their exclusion is provided in Appendix F.
A brief summary of included studies was provided in Table 54. References of included studies are listed in Appendix I.
Table 62
A summary of included studies in the review.
12.1.2. Health economic evidence
A literature search was conducted jointly for all review questions in this guideline by applying standard health economic filters to a clinical search for AMD (see Appendix D). A total of 3,163 unique references was returned. No references were identified as being relevant to this review question. Health economic modelling was not prioritised for this review question.
12.1.3. Evidence statements
The following is a summary of the findings of the above review. The GRADE and CERQual ratings for this evidence can be found in Appendix H respectively. Evidence tables can be found in Appendix E.
12.1.3.1. Barriers to appointment attendance and uptake of treatment for people with AMD
12.1.3.1.1. Emotions related to (anticipated) treatment
Qualitative evidence
The following theme was identified from 2 qualitative studies using semi-structured (n=13) or unstructured interview (n=7) with a moderate level of confidence in the findings:
- People with AMD may decline treatment due to anxiety, fear and distress. They often described these emotions when they prepared for treatments, especially when they were relatively new to treatment or experienced disease progression.
Quantitative evidence
People being treated for late AMD (wet active) reported being ‘scared about receiving an injection’ as one of the obstacles to their treatments (3.0% [95%CI: 2.0 to 4.3%]; 1 survey of 910 people; low-quality evidence).
People with AMD who stopped their follow-ups reported ‘subjective dissatisfaction with injections’ as one of the reasons for their drop-out and discontinuation of treatment (50% [95%CI: 29.9 to 70.1%] and 36.8% [95%CI: 19.1 to 59.0 %]; 2 surveys of 39 people; very low-quality evidence).
People with late AMD (wet active) who underwent intravitreal anti-VEGF treatment reported ‘pain and discomfort’ as one of their reasons for declining further treatment (1.2% [95%CI: 0.4 to 3.5%]; 1 case review of 248 people; very-low quality evidence).
12.1.3.1.2. Communication with healthcare professionals
Qualitative evidence
The following themes were identified from 2 qualitative studies using semi-structured (n=13) or unstructured interview (n=7) with a moderate level of confidence in the findings:
- People with AMD expressed a sense of confusion when they had to interact with a variety of healthcare professionals throughout their treatments.
- People with AMD were concerned by hospital letters that gave little information about what each appointment was for and what they should expect at the appointment. A wide variety of information deficits after diagnosis of AMD degeneration were evident.
- People highlighted a lack of knowledge about the purpose of medical processes and procedures. There were also examples of people attempting to make their own judgement about the need for treatment as they were unsure about the duration of their treatment.
Quantitative evidence
People who interrupted their treatment reported ‘lack of information about follow-up visits’ as one of their reasons for discontinuing follow-up (26.3% [95%CI: 11.8 to 48.8%]; 1 case review of 19 people; very low-quality evidence).
People reported ‘lack of information or advice (about condition, prognosis etc.)’ as one of the reasons for their dissatisfaction with consultation during the treatment (43.4% [95%CI: 39.5 to 47.4%]; 1 survey of 604 people; low-quality evidence).
People reported ‘specialists’ attitudes (dismissive, patronising, brusque, unfeeling, uninterested in patient/condition, use of jargon, etc.)’ as one of their reasons for discontinuing follow-up (43.5% [95%CI: 39.6 to 47.5%]; 1 survey of 604 people; low-quality evidence).
12.1.3.1.3. Treatment itself (the nature of treatment/treatment regimen)
Qualitative evidence
The following theme was identified from 1 focus group/interview study (n=34), with a low level of confidence in the findings:
- People suggested that the invasiveness of the treatment and often painful recovery were significant issues when they underwent treatment.
Quantitative evidence
People with late AMD (wet active) who underwent intravitreal anti-VEGF treatments reported ‘frequency of treatment visits’ as one of their reasons for declining further treatment (0.8% [95%CI 0.2 to 2.9%]; 1 case review of 248 people; very low-quality evidence).
People with AMD who were lost to follow-up reported ‘burden of periodic follow-up visits’ as one of their reasons for dropout (15% [95%CI: 5 to 36%]; 1 survey of 20 people; very low-quality evidence).
People being treated for late AMD (wet active) reported ‘appointments are too frequent/inconvenient’ as one of their dissatisfaction to the treatment (8.6% [95%CI: 7.0 to 10.7%]; 1 survey of 910 people; low-quality evidence).
12.1.3.1.4. Travelling problems
Quantitative evidence
People who stopped their follow-ups reported ‘long distance from home to hospital’ and ‘chose treatment option closer to home’ among their reasons for discontinuation (51.7% [95%CI: 39.2 to 64.1%] and 26.3% [95%CI: 11.8 to 48.8%] respectively; 2 surveys of 77 people; very low-quality evidence).
People who interrupted their treatment reported ‘travelling problems’ as one of their reasons for discontinuing follow-up (5.3% [95%CI: 0.9 to 24.6%]; 1 case review of 19 people; very low-quality evidence).
People with late AMD (wet active) who discontinued intravitreal anti-VEGF treatments reported ‘being referred to a doctor locally for ongoing management’ as one of their reasons (10.9% [95%CI: 7.6 to 15.2%]; 1 case review of 248 people; very low-quality evidence).
12.1.3.1.5. Comorbidities
Quantitative evidence
People who stopped their follow-ups reported ‘general comorbidities’ and ‘serious general disease’ among their reasons for discontinuation (1.7% [95%CI: 0.3 to 9.1%] and 15.8% [95%CI: 5.5 to 37.6%] respectively; 2 surveys of 77 people; very low-quality evidence).
People who failed to reschedule a missed appointment reported ‘other medical/physical illness’ as a barrier to attending follow-up appointments (23.5% [95%CI: 16.3 to 32.6%]; 1 survey of 102 people; low-quality evidence).
People who interrupted their treatment reported ‘comorbidities such as malignancy, Alzheimer’s disease and cerebral vascular disease’ as one of their reasons for discontinuing follow-up (15.8% [95%CI: 5.5 to 37.6%]; 1 case review of 19 people; low-quality evidence).
People with late AMD (wet active) who underwent intravitreal anti-VEGF treatments reported ‘other medical conditions’ as one of their reasons for declining further treatment (4.4% [95%CI: 2.5 to 7.8%]; 1 case review of 248 people; very low-quality evidence).
12.1.3.1.6. Poor visual results
Quantitative evidence
People who interrupted their treatment reported ‘unexpected poor visual results’ as one of their reasons for discontinuing follow-up (42.1% [95%CI: 23.1 to 63.7%]; 1 case review of 19 people; very low-quality evidence).
People with late AMD (wet active) who underwent intravitreal anti-VEGF treatments reported ‘treatment not being perceived to be beneficial’ as one of their reasons for declining further treatment (2.4% [95%CI: 1.1 to 5.2%]; 1 case review of 248 people; very low-quality evidence).
12.1.3.1.7. Difficulty in rescheduling
Quantitative evidence
People who interrupted their treatment reported ‘difficulty in booking new appointments’ as one of their reasons for discontinuing follow-ups (10.5% [95%CI: 2.9 to 31.3%]; 1 case review of 19 people; very low-quality evidence).
People who did not reschedule a missed appointment reported ‘difficulty in rescheduling’ as a barrier to attending follow-up appointments (37.3% [28.5 to 46.9%]; 1 survey of 102 people; low-quality evidence).
12.1.3.1.8. Lack of an escort
Quantitative evidence
People who did not reschedule a missed appointment reported ‘lack of an escort’ as a barrier to attending follow-up appointments (21.6% [95%CI: 14.7 to 30.5%]; 1 survey of 102 people; low-quality evidence).
People being treated for late AMD (wet active) reported ‘caregiver unable to take me to appointment’ as one of their dissatisfactions with treatment (23.5% [95%CI: 20.9 to 26.4%]; 1 survey of 910 people; low-quality evidence).
12.1.3.1.9. Financial burden
Quantitative evidence
People who were lost to follow-up reported ‘financial burden’ as one of their reasons for discontinuing treatment (8.6% [95%CI: 3.7 to 18.6%]; 1 survey of 58 people; very low-quality evidence).
People who did not reschedule a missed appointment reported ‘financial barriers (clinical fees, transportation costs and lost wages)’ as a barrier to attending follow-up appointments (25.5% [95%CI: 18.0 to 34.7%]; 1 survey of 102 people; low-quality evidence).
People being treated for late AMD (wet active) reported ‘cannot afford to attend every appointment’ as one of their dissatisfactions with treatment (5.0% [95%CI: 3.7 to 6.5%]; 1 survey of 910 people; low-quality evidence).
People with late AMD (wet active) who underwent intravitreal anti-VEGF treatments reported ‘treatment perceived to be too expensive’ as one of their reasons for declining further treatment (0.8% [95%CI: 0.2 to 2.9%]; 1 case review of 248 people; very low-quality evidence).
12.1.3.1.10. Long wait-times
Quantitative evidence
People who did not reschedule a missed appointment reported ‘long wait-times’ as a barrier to attending follow-up appointments (52.0% [95%CI: 42.3 to 61.4%]; 1 survey of 102 people; low-quality evidence).
12.1.3.2. Facilitators of appointment attendance and uptake of treatment for people with AMD
12.1.3.2.1. Prior knowledge, treatment experience and peer support
Qualitative evidence
The following theme was identified from 1 interview study (n=7), with a moderate level of confidence in the findings:
- People with AMD felt that treatments were not as distressing as they had originally feared after they went through numerous treatments. They were happy to share their experience with others who were new to the treatment, helping them to ease concerns and reduce unnecessary distress.
Quantitative evidence
Participants who attended follow-up ophthalmology appointments reported ‘networking with other patients with the same eye diseases’ and ‘more education on eye disease/the importance of follow-up’ as one of the potential strategies to improve attendance to follow-up appointments (41.3% [95%CI: 35.2 to 47.5%] and 70.8% [95%CI: 64.8 to 76.2%] respectively; 1 survey of 240 people; low-quality evidence).
12.1.3.2.2. Regular monitoring
Qualitative evidence
The following theme was identified from 1 interview study (n=7), with a moderate level of confidence in the findings:
- People with AMD expressed a desire for regular monitoring by healthcare professionals, as knowing that they were under the care of the hospital gave them a sense of security. They also highlighted the need to self-advocate, and they were expected to identify advancing vision loss and seek appointment and support as and when it was necessary.
Quantitative evidence
People who attended follow-up ophthalmology appointments reported ‘mobile eye care van’ as a potential strategy to improve attendance of follow-up appointments (32.1% [95%CI: 26.5 to 38.2%]; 1 survey of 240 people; low-quality evidence).
12.1.3.2.3. Relationship with healthcare professionals
Qualitative evidence
The following theme was identified from 1 interview study (n=13), with a moderate level of confidence in the findings:
- People with AMD described their experience building relationship with healthcare professionals (particularly nurses) as a way to manage the distress treatment caused. Patients preferred appointments that exemplified a balanced and professional relationship and mutual respect, and that made them feel empowered about decisions they could make regarding treatment and management of their condition.
12.1.3.2.4. Treatment results (visual acuity)
Qualitative evidence
The following theme was identified from 1 interview study (n=13), with a low level of confidence in the findings:
- People expressed a clear willingness to consent to treatment if they continued to gain or maintain vision.
12.1.3.2.5. Pre-appointment reminder (by phone, text, email)
Quantitative evidence
People who attended follow-up ophthalmology appointments reported pre-appointment reminders as a potential strategy to improve adherence to follow-up (81.7% [95%CI: 70.6% to 93.9%]; 1 survey of 240 people; low-quality evidence).
12.1.3.2.6. Parking voucher
Quantitative evidence
People who attended follow-up ophthalmology appointments reported parking vouchers as a potential strategy to improve adherence to follow-up (47.9% [95%CI: 41.7 to 54.2%]; 1 survey of 240 people; low-quality evidence).
12.1.3.2.7. Transportation service to and from the clinic
Quantitative evidence
People who attended follow-up ophthalmology appointments reported transportation service to and from the clinic as a potential strategy to improve adherence to follow-up (44.6% [95%CI: 38.4 to 50.9%]; 1 survey of 240 people; low-quality evidence).
12.1.3.3. Health economic evidence
No cost–utility analyses were identified that were relevant to barriers and facilitators to attendance and uptake of treatment.
12.1.4. Evidence to recommendations
| Relative value of different outcomes | The guideline committee agreed that people’s perspectives and their own accounts are valuable to understand their priorities and difficulties while they were being treated for AMD. It agreed that the included studies provided an overall view of important experiences of people with AMD during their treatment and, in many instances, a familiar reflection of committee members’ own encounters.
Both qualitative and quantitative studies were included in the review to enable triangulation of evidence to contribute to an improved understanding of barriers and facilitators so as to identify possible measures to promote people’s adherence to their appointments and treatments. |
|---|---|
| Trade-off between benefits and harms | Barriers
The qualitative review identified several barriers to adherence to appointments and treatment. These included problems of communication between staff and patients; lack of information about medical procedures; people’s emotional responses to treatments such as anxiety, fear and distress; and the invasive nature of the treatments themselves (plus its painful recovery). All these could lead to people withdrawing from treatments. The committee agreed that these themes tallied with their own experience. In line with qualitative evidence, quantitative evidence also identified lack of information, treatment-related emotions and treatment burden as barriers to adherence to appointments and treatment. It also provided evidence on additional problems that could deter appointment attendance: travel problems, comorbidities, financial burden and difficulty in re-arranging appointments. The committee considered that all these barriers emerging from the evidence were putting people with AMD at risk of not receiving appropriate care. Committee members related their experience that comorbidity was a common reason that people with AMD miss their appointments in clinical practice. Often, patients do not turn up to their appointments for a few months because they are receiving treatment for other health problems. Transportation was also considered an important problem; for example, in some cases, it could cost some patients £30-40 just for a hospital visit, with additional cost for parking. There was consistency in the evidence about a lack of information as a barrier to adherence. The committee noted that people with AMD do not always remember and absorb every piece of information that is provided orally during their appointments; therefore, written information is helpful as people can refer to it later. Therefore, the committee agreed it is important to develop accessible information that patients can take with them to enable them to fully understand critical aspects of their condition and its treatment. The committee noted in the evidence that a high proportion of patients reported dissatisfaction with the attitude of healthcare professionals, with behaviours described as dismissive, patronising and brusque. This was one of the reasons that patients may be disinclined to attend appointments. Rather than highlight these negative judgements in its recommendations, the committee agreed to emphasise the positive steps that would lead to a more satisfactory patient experience: allowing time to understand the patient’s priorities and concerns and to answer their questions. The committee also emphasised that individuals’ needs should also be considered in written communication between the patient and the healthcare professional. For instance, it is important to be aware that people with AMD may have difficulty in reading routine hospital correspondence. Facilitators Qualitative and quantitative evidence in the review also identified some facilitators that improved the adherence to appointments and treatment. Peer-support from people with previous treatment experience was found helpful, especially for those who were newly diagnosed or just started their treatment. Many felt that treatments were not as distressing as they had originally feared after they went through numerous treatments. Therefore, the committee was keen to promote peer-support (i.e. buddy) mechanisms to assist people with AMD coming to hospital for treatment. Quantitative evidence from a survey study also highlighted several facilitators that could improve appointment attendance, including pre-appointment reminders, parking vouchers, facilitated transportation and more education on eye disease as well as the importance of follow-up. Of these, the committee noted there was transportation service for patients available in the NHS, and such service could provide support for people with AMD when attending their hospital visits. However, recent changes have been introduced to NHS patient transport guidance, and many people might not be able to get access to NHS transportation under such change. |
| Consideration of health benefits and resource use | No health economic evidence was found and this review question was not prioritised for health economic modelling.
The committee noted there is no evidence on potential costs and benefits involving adherence of appointment or treatment. Missed appointments incur costs by reducing the efficiency of clinics. On the other hand, some additional costs might result if patients require more information regarding their condition and its treatment, as this might result in longer consultation time and more input from eye care liaison officers to facilitate patients’ needs. However, the committee suggested that individuals’ needs at each hospital visit might vary, and not every patient would need longer consultation time since they could obtain relevant information in different ways formally or informally. This underlines the importance of providing written information for patients that they can digest at their own pace, enabling them to seek further information if required. Such an approach would ensure that unnecessary pressure would not be put on services. |
| Quality of evidence | The overall quality of evidence was graded as low to moderate. The qualitative evidence was based on relatively few studies, although coherence between these studies was good throughout. Two out of 3 qualitative studies were in the NHS setting, and had high relevance and adequacy of data on treatment experience of people with AMD.
The quantitative evidence was rated as very low to low quality. These survey data were from countries across different healthcare settings including UK, Germany, France, Australia, Brazil and USA. The sample size varied in the survey studies, ranging from 19 to 910. The committee agreed that caution should be taken when interpreting the results from these surveys, even though they agreed that the issues reported were relevant and congruent with the qualitative evidence. |
| Other considerations | Whilst acknowledging that this review was primarily concerned with barriers and facilitators to adherence of appointment and treatment the committee drew attention to and sought guidance on self-assessment of visual change, and patients felt a lack of confidence not only on how to make straightforward decision themselves, but also when and where to report any vision changes.
It was noted that, while this review had identified that people with AMD are more positive about attending appointments if they feel well informed about their condition and its treatment, a separate review question explores the exact information that people with AMD and their family members find useful (see section 12.2). The committee also highlighted an ambiguity with regard to recent changes in patient transport guidance, which could potentially affect patients’ accessibility to transportation support. |
12.1.5. Recommendations
- 50.
Provide information in accessible formats for people with AMD to take away at their first appointment, and then whenever they ask for it (see recommendation 53). The information should cover the following:
- information about AMD and treatment pathways, including likely timescales
- key contact details – for example, who to contact if appointments need to be altered
- advice about what to do and where to go if vision deteriorates
- available support (including transport and parking permits)
- links to local and national support groups.
- 51.
Allow enough time to discuss the person’s concerns and questions about their diagnosis, treatment and prospects for their vision. Assess the person’s priorities when making management decisions.
- 52.
Promote peer support for people with AMD, particularly for people who are beginning intravitreal injections, who may be reassured by discussion with someone who has previously had the same treatment.
12.2. Informational needs of people with suspected or confirmed AMD and their family members/carers
Review questions:
- What information do people with suspected AMD and their family members or carers find useful, and in what format and when?
- What information do people with confirmed AMD and their family members or carers find useful, and in what format and when?
12.2.1. Evidence review
The aim of this review was to assess the informational needs of people with suspected or confirmed AMD and their family members/carers. The review focused on identifying studies that fulfilled the conditions specified in Table 55. For full details of the review protocol, see Appendix C.
Table 63
PICO table - informational needs of people with suspected AMD and their family members/carers.
Table 64
PICO table - informational needs of people with confirmed AMD and their family members/carers.
Qualitative studies and systematic review of qualitative studies were included if they explored the information needs of people with confirmed or suspected AMD or their family members/carers. If there was insufficient qualitative evidence, quantitative studies (survey studies) were included. Papers were excluded if they:
- did not include people who are being treated for AMD
- were not in English language
- were abstracts, conference proceedings and other unpublished studies.
12.2.1.1. Description of included studies
A total of 5,575 references were identified through the search. References were screened based on their titles and abstracts and the full texts of 20 references that were potentially relevant to the review question were requested. Five qualitative studies exploring the experiences of patients with AMD or their family members/carers were included in the review. A detailed list of excluded studies and reasons for their exclusion is provided in Appendix F.
A brief summary of included studies was provided in Table 56. References of included studies are listed in Appendix I.
Table 65
Summary of included studies.
12.2.1. Health economic evidence
A literature search was conducted jointly for all review questions in this guideline by applying standard health economic filters to a clinical search for AMD (see Appendix D). A total of 3,163 unique references were returned. No references were identified as being relevant to this review question. Health economic modelling was not prioritised for this review question.
12.2.2. Evidence statements
The following is a summary of the findings of the above review. The CERQual and evidence tables for this evidence can be found in Appendix H and Appendix E respectively.
12.2.2.1. Information needs before diagnosis
The following themes were identified from 1 questionnaire study of 643 people and 1 qualitative study (n=13), with a moderate level of confidence in the findings:
- Patients and carers want increased public awareness of the causes and symptoms of AMD to help improve public interaction with AMD patients and to provide a context for patients at diagnosis.
- “I feel more people should get to know and learn more about what happens to people with AMD and how to help them as some people are unaware how it impacts on these peoples’ lives.” (Vukicevic 2016)
The following theme was identified from 1 qualitative study (n=13), with a moderate level of confidence in the findings:
- Patients’ experiences at the optician varied greatly and how they were told/what they were told had a big effect on the anxiety and fear they feel before formal diagnosis.
- “It worried me….It was when they wouldn’t answer me in the opticians when I said ‘is it serious?’ and not one of them would answer they were just looking at me. That frightened the life out of me, I thought it’s something very, very bad.” (Burton 2013)
12.2.2.2. Information needs at/after diagnosis
The following theme was identified from 1 qualitative study (n=13), with a moderate level of confidence in the findings:
- The information at diagnosis needs to be matched to the person’s disease stage: early AMD patients needed information about monitoring their condition and spotting changes; late AMD (wet active) patients needed to know about available treatments and outcomes; patients with advanced disease needed to hear about support services and equipment.
The following themes were identified from 2 qualitative studies (n=25, n=13), with a high level of confidence in the findings:
- Patients were confused about the different names and types of AMD and were unware that AMD was so common.
- “I didn’t realise it was so common” (Burton 2013)
The following themes were identified from 4 qualitative studies, with a high level of confidence in the findings:
- Patients often lacked a clear understanding of the potential causes and risk factors associated with AMD, with many linking it to the ageing process.
- “….. doesn’t matter if you go to your dentist, doctor, optician- it’s your age” (Crossland 2007)
- Most patients were not aware of the potential effects of smoking on disease development and progression, while those patients that mentioned smoking as a cause did not necessarily believe it.
- “They say that smoking does it- I’ve been smoking now since 1941, 42. …..I’ve gotarthritis in both knees, they say that’s due to smoking, high blood pressure, that’s due to smoking…. [I] Just think they’re all wrong, I don’t know what to say” (Crossland 2007)
- The role of genetic susceptibility in developing AMD was not widely understood.
The following themes were identified from 3 qualitative studies, with a high level of confidence in the findings:
- Patients discussed a need for accurate information about disease progression to help them plan for the future and to avoid unrealistic expectations of treatment outcomes or unnecessary worry about going blind.
- Patients reported giving up favourite pastimes to help preserve their vison.
- “I keep sort of thinking oh I will [do some painting] and I think no, I sort of put a limit on how much I use my eyes a lot, does this make sense to you?” (Burton 2013)
The following themes were identified from 3 qualitative studies, with a moderate level of confidence in the findings:
- Patients often had unrealistic expectations of treatment outcomes and this was not helped by inaccurate information from neighbours/family members.
- “Well, [name] had something done to his eye at the hospital, didn’t he? Now he can see better…… he had an operation and he can see perfect” (Burton 2013)
- Patients did not necessarily understand the importance of the use of vitamins and certain foods to promote eye health and when they could be useful during disease progression.
- Patients did not understand why glasses were not able to correct their vision problems.
- Patients were often unaware of the purpose of hospital visits and medical procedures
- ‘I’m going, as I say I’m going up there next month. I don’t know what the procedure is going to be, but they don’t tell you do they? They don’t tell you.” (Burton 2013)
- An understanding of the processes involved in treatment and the short -term side effects allowed patients to plan their post-treatment activities to cope with these problems.
- “If I go there, I know I’m going to get an anaesthetic in the eye, and I’m going to get the injection, and…… and I’m going to be unable to see clearly for a number of hours. I can come back home, I can put ….just relax and when it comes back, then I’m back to normal” (McCloud 2015)
- Information about abnormal outcomes and when to seek help would also be useful.
- Good communication regarding changes in treatment regimens was linked to better patient experience.
The following themes were identified from 1 qualitative study (n=13), with a moderate level of confidence in the findings:
- Patients were unaware of support groups or unlikely to attend them for fear of associating with depressed people.
- Patients were not necessarily aware of sources of financial help (e.g. attendance allowance) or the advantages associated with being registered as partially sighted.
- “He said that you could be registered as part-sighted. Well what does that mean? What does it do? Does it open the door for different things?” (Burton 2013)
- Patients who were not being regularly monitored were expected to identify advancing vision loss and seek appropriate support as and when it was necessary. However, they did not understand what constituted a serious change and were worried about wasting doctor’s valuable time and NHS resources. They were also relatively unlikely to attend accident and emergency if their vision changed as they did not associate A and E with this type of care.
- “I mean it’s fine isn’t it, for someone to say to you, well you would notice a change because…. But you can’t be sure…I’m not sure what I’m looking for! I mean obviously if I suddenly couldn’t see or some dramatic change, but would it be as dramatic as that?” (Burton 2013)
12.2.2.3. Formats of information
The following theme was identified from 1 qualitative study (n=13), with a moderate level of confidence in the findings:
- Verbal communication of information was problematic for many patients as they struggled to understand and retain the information given to them in hospital consultations. They also reported problems with hearing and understanding the doctors’ accents. The type of language used by medical staff was confusing and inaccessible.
- The use of written sources of information was potentially problematic as patients could be confused by the volume of information and find it hard to read the documents.
12.2.2.4. Additional sources of information
The following theme was identified from 1 qualitative study (n=13), with a moderate level of confidence in the findings:
- Information from non-medical sources was not always accurate. In particular, information from neighbours and friends could be very misleading and discourage people from seeking help in a timely manner or lead them to have unrealistic expectations from treatment.
- Support groups could be useful sources of information, but patients were not necessarily aware of them or willing to attend.
- Public presentations were raised as a useful source of information, but required pro-active patients.
12.2.2.5. Caregiver perspectives and needs
The following themes were identified from 1 questionnaire study of 643 people, with a high level of confidence in the findings:
- Carers need sufficient information to allow them to understand the condition and the physical/emotional effects on the person’s wellbeing.
- Caregivers raised the point that since AMD has a genetic component it is important that all family members of AMD sufferers are aware of their increased risk and have regular eye tests.
- “Important to be monitored and diagnosed early to access treatment to stop if possible progress of disease. Important to be educated and be aware of risk and contributing factors” (Vukjcevic 2016)
- They lack information about support services and respite care options.
12.2.2.6. Additional points
The following themes were identified from 1 qualitative study, with a moderate level of confidence in the findings:
- Patients were unaware that medical research was being carried out.
- Patient experiences were more positive if they received reassurance, support and caring communication from medical staff.
12.2.2.7. Health economic evidence
- No cost–utility analyses were identified that were relevant to the informational needs of people with suspected or confirmed AMD and their family members/ carers.
12.2.3. Evidence to recommendations
| Relative value of different outcomes | The committee agreed that the most important perspectives on information needs are those of the individual and, if appropriate, their family members/carers. Therefore, the committee agreed to restrict this review to studies which qualitatively report the views and experiences of either people living with AMD or their carers. It was also noted that, as people’s information needs will be affected by the way care is organised for them, recent studies conducted in the UK would be of particularly high value, as the findings would be much more directly applicable to the context of this guideline. |
|---|---|
| Trade-off between benefits and harms | The committee discussed the challenges associated with information provided by optometrists before referral for diagnosis. It agreed that a shortage of information could increase fear and anxiety, but the amount of information required varied between people. Too much detailed information at this early stage could lead some people to feel overwhelmed and, as the optometrist’s provisional diagnosis does not always reflect the final diagnosis, it could also subject people to unnecessary stress.
In addition, the committee reported that optometrists may not feel confident to offer a clearer diagnosis at this stage and may be worried about legal liability if they misdiagnose AMD. Optometrists were also perceived to be reluctant to stock information leaflets from eye charities and support services and there was some discussion that the contents of these leaflets might be too specific for people prior to formal diagnosis. Further discussion focused on the terminology used to explain AMD throughout the diagnosis process. The committee agreed that this was inconsistent and the use of poorly chosen analogies, for example describing AMD as a ‘wrinkle at the back of the eye’, could lead to confusion and misconceptions by the patient. It was agreed that further research was needed to determine the best choice of terminology and how to describe the condition to people at all stages of the disease and in different healthcare settings. In particular, it wanted to avoid the implication of AMD being a result of ‘wear and tear’ or overuse, which could lead to unnecessary alterations in people’s behaviour to try to conserve their vision. The committee discussed the need for an increased general awareness of AMD to help provide a context for diagnosis, but this raised the concern that this could increase rather than reduce levels of anxiety for some people with suspected AMD prior to formal diagnosis. The committee agreed that it is important to tailor the information provided to the individual person. In particular, it stressed the importance of providing specific information for working people with AMD. However it was noted that this population was not covered by the evidence collected in this review (participants’ ages were 70-90 years). As a result, the committee made a research recommendation to examine the information needs of this specific subpopulation. The committee agreed that the information also needed to be matched to the stage of disease progression and should be provided at multiple points during the disease course. It discussed who would be best placed to impart this information and, from committee members’ experience, agreed that an ECLO (eye clinic liaison officer) would be a good choice, if available. However, due to the lack of AMD-specific evidence in the literature on the benefits of ECLOs, the committee was unable to recommend this directly. The committee agreed that people with AMD needed to be provided with basic information on the types, causes and frequency of AMD. However, it was concerned that the issue of genetic susceptibility could be confusing and cause increased anxiety if not explained carefully. It discussed the importance of smoking as a cause of AMD and whether further damage could be reduced by smoking cessation (see chapter 6.1 for information on risk factors for AMD). The committee agreed that people need detailed, accurate information about disease progression and treatment options to allow them to plan for the future and to prevent disappointment associated with unrealistic expectations of recovery. The committee agreed that people need clear information regarding the purpose of hospital visits, side-effects and the role of vitamins. It noted that there are problems associated with expecting people to monitor changes to their vision and seek help at appropriate times and that this was linked to recommendations made in section 11.2 (self-monitoring for people with AMD). The committee discussed the need for signposting to point people to other sources of information, advice and support, and agreed that it is important for people to understand the benefits of being registered as sight impaired/severely sight impaired. The committee discussed the importance of the manner in which the information is conveyed to people by the optometrist before formal diagnosis and by medical and support staff following diagnosis. It referred to section 12.1, and noted that the attitude of staff was a potential barrier to compliance with treatment. Combined with the review evidence presented here, the importance of imparting information to people in a caring and sensitive manner was emphasised. In addition, the committee stressed that the nature of the condition makes it especially important that information is presented in an accessible format that is suitable for the particular person. The committee agreed it was important to emphasise professionals’ responsibilities under the NHS Accessible Information Standard, in this regard. |
| Consideration of health benefits and resource use | The committee agreed that, because information provision should form part of any well organised patient pathway and is already part of routine care, there would not be expected to be any significant resource impact from the implementation of these recommendations. |
| Quality of evidence | The committee agreed that the evidence presented was in line with their experience, but noted that there were evidence gaps relating to the information needs of younger, working-age people with AMD and the best terminology to describe the type and causes of AMD.
To supplement evidence available from published literature, the committee drew on comments made by stakeholders during consultation on the draft guideline (including a survey of 153 people with AMD carried out by the RNIB with specific reference to the draft guideline). With reference to this evidence, it agreed that some themes that had not explicitly emerged in the literature were important issues about which people with AMD would benefit from advice. In particular, multiple stakeholders noted that vision standards for driving were an important topic, and several also suggested that reference should be made to the fairly common complication of Charles Bonnet syndrome - that is, visual hallucinations associated with retinal disease - which many people with AMD may mistake as a psychotic phenomenon if they are not advised about it in advance. The committee discussed the availability of data from studies of general low-vision services but, since these studies were not AMD specific, it was unable to recommend low-vision services as a primary source of information and support for people with AMD. |
| Other considerations | The committee agreed that the general advice in the NICE guideline on patient experience in the NHS would also be applicable to AMD, and therefore decided to add a cross-reference to this other guideline. |
12.2.4. Recommendations
- 53.
Provide people with AMD, and their family members or carers (as appropriate), with information that is:
- available on an ongoing basis
- relevant to the stage of the person’s condition
- tailored to the person’s needs
- delivered in a caring and sensitive fashion.
Be aware of the obligation to provide accessible information detailed in the NHS Accessible Information Standard. For more guidance on providing information to people and discussing their preferences with them, see the NICE guideline on patient experience in adult NHS services.
Provide opportunities to discuss AMD with the person. Topics to cover should include:
- what AMD is and how common it is
- types of AMD
- causes of AMD
- stopping smoking and other lifestyle advice
- how AMD may progress and possible complications
- the possibility of developing visual hallucinations associated with retinal dysfunction (Charles Bonnet syndrome)
- vision standards for driving
- tests and investigations
- treatment options, including possible benefits and risks
- who to contact for practical and emotional support
- where the person’s appointments will take place
- which healthcare professionals will be responsible for the person’s care
- expected wait times for consultations, investigations and treatments
- the benefits and entitlements available through certification and registration when sight impaired or severely sight impaired
- when, where and how to seek help with vision changes (see 11.2.5)
- signposting to other sources of information and support
12.2.5. Research recommendations
- 20.
What terminology is clearest and most acceptable to patients to describe suspected or confirmed AMD throughout the pathway?
Why this is important
Being provided with clear information about the condition is important for people who are at risk of developing and/or are diagnosed with AMD, but there was inconsistent and the use of poorly chosen analogies in practice, and this could lead to confusion and misconceptions amongst the patient. Qualitative studies of the choice terminology and how to describe the condition to people at all stages of the disease and in different clinical settings (for instance both primary care and secondary care) would enable to optimisation of people’s understanding about AMD and obtaining appropriate supports for people at different stages of the condition.
- 21.
What is the impact of AMD on working people (aged<65 years or in paid/unpaid employment), and what information do they find useful and in what format and when?
Why this is important
The incidence of AMD is known to be higher in aging population (particularly aged between 70-90 years), but it can also affected people in younger age (such as 55 years onward). Little is known about the impact of AMD on this group of population, and what specific information that they consider useful may help them to live with the condition. Qualitative studies of experience living with AMD and information needs for people aged under 65 years would fill the gap in current evidence and would identify their specific needs to optimise support services for them.
- Information - Age-related macular degenerationInformation - Age-related macular degeneration
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