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lunnela j, kääriäinen m & kyngäs h (2011) Journal of Nursing and Healthcare of Chronic Illness3, 119–129 Web-based intervention for improving adherence of people with glaucoma
Aim. To assess the effects of web-based patient-centred education and support on the adherence of people with glaucoma.
Background. Glaucoma is a worldwide chronic ophthalmic illness with the symptoms of increased intraocular pressure which causes blindness. One problem is the poor adherence of people with glaucoma. Patient-centred approach should be the aim of patient education. Patient education of people with glaucoma focuses on symptoms, treatments, prognosis and medication.
Design. A non-randomised experimental design with intervention of test (n = 34) and control (n = 51) groups.
Method. The test group received web-based patient education and support intervention, which consist of several informational links concerning treatments, medication and self-care of glaucoma. The control group received the traditional patient education and support. The data were collected from adult people with glaucoma by self-reported ACDI instrument at baseline and follow ups (two and six months) between December 2008–May 2009.
Results. Participants in both the test and the control groups showed improvement in their adherence. No statistical significant differences were found between the test and control group. Adherence to care (SUM9), support from nurses and physicians (SUM1) and care planning (SUM8) improved more in the test group than in the control group.
Conclusion. The adherence of people with glaucoma in the test group improved on receiving this web-based patient education and support. However, the results of the control group also improved during the intervention. It is possible to improve chronically ill people’s adherence and self-care by developing new, time-saving and patient-centred methods using technical equipment.
Relevance to clinical practice. These results are useful in developing new patient education and support methods for people with glaucoma as well as other people with chronic illness.
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An ophthalmic patient receives information mainly from the ophthalmologist (Odberg et al. 2001, Mojon-Azzi et al. 2002, Hoevenaars et al. 2005, Herndon et al. 2006, Lunnela et al. 2006), nurse (Hoevenaars et al. 2005, Herndon et al. 2006), patient associations, books, magazines, leaflets and the Internet (Hoevenaars et al. 2005, Dietlein et al. 2006, Herndon et al. 2006). The focus in patient education of people with glaucoma is on symptoms, treatments, prognosis and medication (Sheppard et al. 2003Hoevenaars et al. 2005, Juzych et al. 2008). Patient education should be built on a patient-centred approach (Kääriäinen et al. 2005b, Hoevenaars et al. 2008). The patient expects information on how to manage with the illness, the possibilities of rehabilitation, social and psychological issues, social security and issues concerning working life (Hoevenaars et al. 2005). The aim of patient education is to support the patient in taking responsibility for his/her health and to treat him/herself as well as possible (Phillips 1999, Kyngäs et al. 2007).
The most common ways of patient education are oral patient education with written educational material (Esposito 1995, Johansson et al. 2002, Kyngäs et al. 2007) or web-based education (Kyngäs et al. 2007). Although the use of technical equipment in patient education (video, computer, telephone) was not very common about 10 years ago (Johansson et al. 2002), it is becoming more and more popular (Dodson et al. 2008, Loiselle & Dubois 2009). However, the available websites on health care, patient education and support are not very well controlled and the contents might be inaccurate, inappropriate (Rahmqvist & Bara 2007, Atack et al. 2008), inferior quality (Peterlin et al. 2008) or not evidenced-based (Ayantunde et al. 2007). The patients have described health care websites confusing and that is why they consider reliable websites to be created by physicians (Atack et al. 2008) or other healthcare personnel (Delic et al. 2006). Moreover, patients expect websites to be easy to enter at home and whenever it is suitable for them (Atack et al. 2008). Patients consider websites created by physician or nurse (Dodson et al. 2008). Surprisingly, those who do not have a computer at home are also interested in reliable websites concerning their health (Ayantunde et al. 2007). In this study the focus is on websites consisting patient education and support for people with glaucoma.
The influence of patient education and support has been studied in conjunction with intervention studies. Some papers report positive effects of patient education on coping in self-care, anxiety and patient satisfaction (Gammon & Mulholland 1996, Beddows 1997, Loiselle & Dubois 2009). For example, the self-control of patients with high blood pressure problem (Green et al. 2008) and the weight control improved as a result of effective web-based support (Rothert et al. 2006). Moreover, people were more satisfied with the information (Loiselle & Dubois 2009). However, some of the studies had difficulties in indicating actual effects (Boter et al. 2000, Kääriäinen & Kyngäs 2005, Brown et al. 2006, Baraz et al. 2010). Some intervention studies are focused on the effects of patient education of patients with glaucoma (Rosenthal et al. 1983, Schwartz 2005, Blondeau et al. 2007). Still, there are no studies concerning web-based intervention to enhance the adherence of patients with glaucoma.
The aim of this study is to assess web-based patient education and support effects on the adherence of patients with glaucoma. The research question was:
Are web-based patient education and support more effective than traditional patient education and support in improving the adherence of people with glaucoma?
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The baseline data of test and control groups were analysed together to describe the adherence of glaucoma patients. According to the results, 76% (n = 60) of the participants in the test and control groups were well adherent. The adherence of all participants is described in Table 3, and factors connected to adherence in Table 4.
Table 3. Adherence of people with glaucoma, baseline
| ||Total||Good adherence||Poor adherence||Missing|
|n||n (%)||n (%)||n (%)|
|Adherence to medical care SUM5||79||67 (85)||5 (6)||7 (9)|
|Responsibility SUM6||79||65 (82)||7 (9)||7 (9)|
|Care planning SUM8||79||36 (45·5)||36 (45·5)||7 (9)|
|Carrying out the care Variable 3||79||45 (57)||27 (34)||7 (9)|
|Adherence to care SUM9||79||60 (76)||12 (15)||7 (9)|
Table 4. Factors connected to adherence of care, baseline of test and control group
| ||Total||Adherent||Poorly adherent||p (χ2)|
|(n = 72)||(n = 60)||(n = 12)|
|n||n (% of total)||n (% of total)|
|Factors connected to adherence of care|
| Support from nurses and physicians (SUM1)||72||34 (47)||38 (53)||0·291|
| Sense of normality (SUM2)||72||53 (74)||19 (26)||0·042|
| Support from relatives and friends (SUM3)||72||42 (58)||30 (42)||0·521|
| Motivation and energy (SUM4)||72||70 (97)||2 (3)||0·200|
| Consequences of treatments (SUM7)||72||65 (90)||7 (10)||0·050|
|Fear of vision loss var. 33|
| Afraid||65||53 (81)||12 (19)||0·213|
| Not afraid||7||7 (100)||0 (0)|| |
The difference between test and control group was analysed with independent-samples t-test. No statistical significant differences were found between the three measurements (p > 0·05). As a result, the analysis focused on interpreting the means. In most sum variables there were only little differences. The crucial results are described in Table 5.
Table 5. Crucial means between test and control groups
|Sum variable||Test group = 1 Control group = 2||n||Mean|
On the bases of the means the support from nurses and physicians (SUM1) was improved within the test group between all three measurements, whereas within the control group the change between the first and second measurement was worsening. However, the change within the test group between the first and second measurement in adherence of care (SUM9) was worsening, while it improved very well between the second and third measurement and improved well between first and third measurement. The results of the control group in adherence of care (SUM9) were also better between the first and second as well as the second and third measurement.
Lastly, the difference between all three measurements in the test group was analysed using paired sample t-test. No statistical significant differences were found (p > 0·05). The crucial differences in the means are described in Table 6. Between the second and third measurement the sense of normality (SUM2) and motivation and energy (SUM4) as well as fear of vision loss (var. 33) were decreased. Nevertheless, taking care of medication (var. 3) was improved. During the whole intervention (six months), the motivation and energy (SUM4) decreased as well as fear of vision loss (var. 33). However, the support from nurses and physicians improved as well as care planning (SUM8) and adherence of care (SUM9).
Table 6. Crucial mean differences between the measurements in test group, n = 17–19
|Sum variable||First measurement = 1 Second measurement = 2 Third measurement = 3||n||Mean|
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The aim of an experimental study is to find out if the intervention causes changes in the dependent variable (Polit & Beck 2008). This intervention study did not indicate any statistically significant differences between the test and control groups. This is supported by some previous adherence studies (Boter et al. 2000, Kääriäinen & Kyngäs 2005, Brown et al. 2006). Similarly to this study, some intervention studies have found positive effects on adherence (Green et al. 2008).
Chronic illness and coping with it is often a burden for the people. The aim of the healthcare personnel is to educate and support patients to enhance behaviours to cope with their lives. People with glaucoma are usually older people. When educating and supporting them other illnesses and treatments as well as possible vision loss caused by the illness should be taken into concern. The age structure of the participants of this study illuminates that typically people with glaucoma are mainly older people. In this study the other illnesses was not asked. However, a number of the participants in the test group were able to use the computer, (see also Tilastokeskus http://www.stat.fi/til/sutivi/index.html), which indicates that these participants were in quite good condition. These results also indicate that it is possible to educate older people via internet. For example, in Finland the use of the internet has become more common among older people. Over half (60%) of people aged 65–74 have been reported to use the internet daily (Tilastokeskus http://www.stat.fi/til/sutivi/index.html).
Patient education and support are factors that improve adherence in care (Kyngäs et al. 2004, Lunnela et al. 2006). In this study people with glaucoma were better adhered in their care than chronically ill patients are usually (Adams et al. 1997, Roter et al. 1998, Lahdenperä & Kyngäs 2000). Adherent person with glaucoma takes care of the medication properly according the instructions and visits the ophthalmologist and follow-up inspections regularly. However, the concept of adherence is very abstract and the measuring is difficult because the patient usually gives a better impression of their adherence than it is in reality.
None of the factors connected to adherence was statistically significant in this study. Less than half of adherent patients with glaucoma had received support from nurses and physicians. However, earlier studies (Johansson et al. 2002, 2003, 2004, Kääriäinen & Kyngäs 2005, Kääriäinen et al. 2005a, Kaimal et al. 2008) have pointed out that education and support from the healthcare personnel are crucial in terms of self-care and coping with illness. Almost all adherent people were motivated and carried out their medication in spite of side-effects. Nevertheless, well motivated and active people are more likely to participate in a study measuring adherence.
Most of the participants were afraid of vision loss which suggests that people with glaucoma are well aware of the possible consequences and complications of the illness. On the basis of this study it seems that the fear reduced during the intervention, which is good, because living with fear is very hard and might lead to depression and poor adherence. Well adherent participants experienced the consequences of the treatment well, which leads to the conclusion that good consequences encourage people to apply adequate self-care and adherence. These facts should be considered carefully when developing new, patient-centred education methods (Johansson et al. 2002, 2003, Kaimal et al. 2008).
The results showed improvement in both groups during the intervention, but in the test group the results were even better. Adherence to care improved more in the test group than in the control group. The participants in test group were able to read the educational and supporting links whenever they wanted, while the participants in the control group received education and support only when they were visiting the ophthalmologist or nurse. This leads to the conclusion that web-based education and support is more effective than the traditional way. However, the results were also good in the control group, which indicates that active communication with patients by sending questionnaires improves their responsibility, self-care and adherence. The use of technical equipment is becoming more and more common among older people (see Tilastokeskushttp://www.stat.fi/til/sutivi/index.html). In the future, text-messages or e-mail could also be sent to the patients just to remind them to take their medication and not to forget their appointment with the ophthalmologist. Today’s middle-aged people are the older people of the future, and the majority are very capable of using the computer.
Although the traditional way of patient education and support is widely used, using web-based education and support is worth considering on the basis of the results of this study. The links used in this study comprised, for example, the medication, general knowledge about glaucoma, examinations and treatments as well as social security. According to earlier studies (Sheppard et al. 2003, Hoevenaars et al. 2005), these are important matters, in which people are interested. As shown in this study, the web-based education and support has lead to better adherence and self-care, which is the aim of patient education (Phillips 1999, Kyngäs et al. 2007).
There are some limitations in this study. First, both groups remained smaller than expected. Only 85 participants enrolled in the study during three months. Due to the assumption that the interest of those enrolled might weaken if they had to wait longer, we decided to start the intervention. In addition, there were some other studies going on at the glaucoma unit, so it is possible that people were too tired of taking part in many studies. Some of the participants did not remember or did not want to answer all measurements. Thirteen (n = 13) participants of the test group and six (n = 6) of the control group did not answer in all three inquiries. Seven (n = 7) of the test group and one (n = 1) of the control group participants answered only one inquiry. Nevertheless, their answers to the other instruments were included so that any important answers were not lost.
Second, the response rate of the participate in the study was quite small (47%). The low response rate might indicate poor adherence among people with glaucoma, although 76% of participants were well adherent. Poorly adherent people do not answer this kind of questionnaires. Anyway, self-reported adherence may be different than real adherence. Especially, people with poor adherence evaluate their adherence to be better than it really is. However, these results support the earlier results of adherence of people with glaucoma (Lunnela et al. 2006, 2011).
The third limitation of this study is that the duration of illness was not asked. It would have been important to know this, as people with a chronic illness need education and support most at the early stages of the illness (Heiskanen 2005). Several researches (Taylor et al. 2002, Hoevenaars et al. 2005, Schwartz 2005, Watkinson 2005, Herndon et al. 2006, Juzych et al. 2008) have reported problems in adherence among people with glaucoma. Future research has to investigate the needs of education and support of people who had recently received glaucoma diagnosis and whether it is possible to help them to adhere and take responsibility for their self-care better with web-based patient education and support. The need for social support is very wide, because getting the diagnosis might lead to strong feelings, such as depression and fear (Odberg et al. 2001, Uenishi et al. 2003). But is the web-based support suitable for reducing depression or is it possible that it causes the opposite effects (see Malik & Coulson 2008)?
The fourth limitation is that the links used in this study were selected by the researcher. Despite the long experience in ophthalmic nursing, the links should have been controlled by an expert, like an ophthalmologist. Only the hospitals’ own links were controlled by the glaucoma units’ ophthalmologist who had also been creating the guidelines. In previous studies, researchers have pointed out that websites are not very well controlled (Rahmqvist & Bara 2007, Atack et al. 2008), or they are not evidence-based (Ayantunde et al. 2007). It is a challenge for healthcare personnel to create evidenced-based and controlled websites.
The fifth limitation is that the test group was not asked how often they visited the websites during the intervention. According to a previous study (Atack et al. 2008) people like to enter websites when the time was suitable for them. Nevertheless, it is possible that they visited some other pages, too. However, the results of the test group were better after intervention, which is very important for their self-care and coping with the illness.
Finally, we do not think that the six months follow up is a limitation of this study, however, it should be considered whether it is long enough in this type of adherence study. Based on the fact that adherence is not stabile, longer follow-ups are needed. On the other hand, in this study a period of six months was enough to see what happens during the web-based intervention, and it provides knowledge for developing web-based patient education and support.
Nevertheless, some positive effects occurred according to this study. These results indicate that web-based patient education and support is an effective means, and this kind of method may save time for healthcare personnel in the future. These results indicate that a web-based patient education and support method is suitable also for older, chronically ill patients. People have the possibility to enter the web-sites whenever it suites them.
Relevance to clinical practice
Patient education and support are crucial in nursing, the main focus of which is to support patients to enhance their self-care and adherence. In clinical practice it is important to pay attention to the fact that person’s motivation and energy to take care of oneself decreases within time. It is also crucial to realize that living with fear is very exhausting for people with glaucoma. New methods of patient education and support using technology are needed. The effects of patient-centred web-based education and support should be studied more extensively. However, these results are useful in developing new patient education and support methods for glaucoma as well as other people with chronic illness.