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Keywords:

  • adherence;
  • chronic illness;
  • glaucoma;
  • patient education;
  • support;
  • web-based intervention

Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Method
  6. Results
  7. Discussion
  8. Conclusion
  9. Contributions
  10. Sources of funding
  11. References

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.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Method
  6. Results
  7. Discussion
  8. Conclusion
  9. Contributions
  10. Sources of funding
  11. References

Being ill is always an exceptional situation for a person. The patient education and support is important for people with a chronic illness for enhancing their lives (Heiskanen 2005), while it is also crucial to patient adherence (Kyngäs et al. 2004, Lunnela et al. 2006, 2011). Only about a half of chronically ill patients adhere to their care (Adams et al. 1997, Roter et al. 1998, Lahdenperä & Kyngäs 2000, Baraz et al. 2010). In this study, adherence is defined as a person’s responsible, intentional and active role in self-care to maintain his/her health in collaboration with the healthcare personnel (Kyngäs 1999).

The aim of patient education is to support patients to be independent in matters concerning their health and care by educating them as well as possible (Kääriäinen & Kyngäs 2005, Kääriäinen et al. 2005a). As the recent tendency shows a shift towards shorter stays in hospital, new, time-saving and patient-centred education methods are needed (Johansson et al. 2002, 2003, Kaimal et al. 2008, Loiselle & Dubois 2009). Furthermore, the general assumption is that patients take more responsibility in taking care of themselves (Johansson et al. 2004).

Glaucoma is a chronic ophthalmic illness. It is a progressive neuropathy of the optic nerve with typical structural and functional abnormalities in the visual field. One of the symptoms is increased intraocular pressure. In the majority of the cases, abnormalities progress slowly and occur at the initial stages of the illness (Tuulonen et al. 2003). The treatment of glaucoma comprises medication, laser treatment and surgical procedures (Marquis & Whitson 2005). The typical age of getting glaucoma is over 40 years (Hietanen et al. 2005).

It has been estimated that there will be 60 million people with glaucoma by the year 2010, and glaucoma will be the second leading cause of blindness worldwide (Quigley & Broman 2006). The problem of adherence of people with glaucoma is very common. Glaucoma itself requires regular visits to the ophthalmologist and follow-up inspections. People have to take responsibility of their care and follow-up visits. That is why it is very important that people with glaucoma adhere well to their care (Taylor et al. 2002, Hoevenaars et al. 2005, 2008, Herndon et al. 2006, Wilensky et al. 2006, Juzych et al. 2008, Quigley 2008).

Background

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Method
  6. Results
  7. Discussion
  8. Conclusion
  9. Contributions
  10. Sources of funding
  11. References

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 need for social support is wide among people with glaucoma (Uenishi et al. 2003, Lunnela et al. 2010). Getting a glaucoma diagnosis affects the quality of life negatively. It causes strong feelings, such as fear, depression, fear of blindness (Odberg et al. 2001) and losing hope (Uenishi et al. 2003). Informational support from nurses and physicians have been reported to relieve the fears of patients (Koivula et al. 2007). However, some negative effects (depression and isolation) have also been reported (Malik & Coulson 2008).

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.

Aim

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?

Method

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Method
  6. Results
  7. Discussion
  8. Conclusion
  9. Contributions
  10. Sources of funding
  11. References

Design

The study was carried out as a non-randomised experimental design with test and control groups to assess whether web-based patient education and support are more effective than the traditional way.

Settings and sample

All participants were selected from one glaucoma unit in a Finnish hospital where about 600 patients are treated monthly. Only participants with glaucoma diagnosis were included, while glaucoma suspects were excluded. Other criteria of inclusion were the minimum age of 18, use of glaucoma medication and participants’ health condition, such as capability to read (good vision), no long-term hospitalisation, no dementia and capability of answering in Finnish. There were 180 participants who met the inclusion criteria during September–October (five weeks). An invitation letter to participate in the study (including cover letter, form of informed consent and a prepaid envelope) were sent to them. By the end of November (2008) 85 participants agreed to participate in this study. By this time some enrolled participants called the researcher to ask when they will receive the instrument. To retain those who had already agreed to participate, the intervention was started. The response rate was 47%. The sample size was based on convenience sampling (Polit & Beck 2008). The data were collected between December 2008–May 2009.

Even though not all respondents answered at the baseline, they received the instrument after two and six months. The total sample size in six months was 34 in the test group and 51 in the control group. The study recruitment process is illustrated in Table 1.

Table 1.   The study recruitment process
 BaselineAfter two monthsAfter six months
Test group (n = 34)24 (71%)25 (74%)28 (82%)
Control group (n = 51)48 (94%)51 (100%)47 (92%)

Data collection

The data were collected by self-reported adherence chronic disease instrument (ACDI) to assess the effects of intervention. The instrument was developed and tested by Kyngäs (1999). It has also been used previously in another research concerning the adherence of people with glaucoma (Lunnela et al. 2006, 2011), and in other studies on chronically ill adolescents and adults (Kyngäs et al. 2000, Kyngäs & Rissanen 2001, Kyngäs 2002). The instrument consists of 13 demographic data questions and 33 items on the following topics: adherence (medical care, responsibility, care planning and carrying out the care), and factors connected to adherence (support from physicians and nurses, sense of normality, support from relatives and friends, motivation and energy, consequences of treatments and fear of vision loss). An electronic version was used for test group and a paper-based version for the control group. Large font size in bold lettering was used (Arial 14), and colours were chosen so that the contrasts were as clear as possible (McLauchlan et al. 2002). The instrument was formatted using a five-point Likert scale ranging from strong agreement through indecision to strong disagreement.

Participants

On the basis of similarity of gender as well as mean and deviation of age, the participants were allocated into test and control groups by the researcher. Table 2 provides the summary of the descriptive statistics of the participants. The participants in the test group were supposed to have the possibility to answer via e-mail.

Table 2.   Descriptive statistics for participants (n = 85)
CharacteristicTest group n (%)Control group n (%)
Gender
 Female19 (56%)29 (57%)
 Male15 (44%)22 (43%)
Total34 (100%)51 (100%)
Mean age
 Female61·468·8
 Male63·469·8
Total62·469·3
Age deviation
 Female38–8238–84
 Male41–8248–86
Total38–8238–86

Intervention

The test group (n = 34) received patient education and support via Internet. This software was designed for intervention in cooperation with researchers and the IT (Information Technology) service provider (a Finnish company specialising in health care quality development). The education and support consists of several informational links. The first eight links, controlled by an ophthalmologist, were glaucoma units’ guideline links concerning glaucoma and its treatments, medication, examinations as well as self-care of glaucoma. These links have previously been used only by the healthcare personnel in the hospitals’ Intranet. The other links included information about glaucoma, examinations, treatments and self-care of glaucoma as well as information on social security, visual impairment and the Finnish Federation of the Visually Impaired. The links for this intervention were selected by the researcher on the basis of their high quality and clearness. All links (nineteen in Finnish, five in English) were given to participants after baseline data collection. They were free to access them when they wanted and to look for information depending on their needs at that moment. The participants visited their ophthalmologist normally (once or twice) during the intervention (six months). The timing, amount and place of visits were not asked.

The baseline ACDI was submitted to the participants of the test group (n = 34) via e-mail attached to the cover letter. They were advised to answer as soon as possible, although no deadline was stated. After answering the ACDI, the participant submitted their replies to the IT service provider via e-mail. The IT system is created so that the participant receives an electronic feedback automatically and immediately. In the feedback they receive information whether they adhere well or not, and in which topics they need to improve their self-care to achieve better adherence. They also received information on the links mentioned above. They were also advised to download the feedback of their adherence and the links to their own computer for later use. If the participant had problems with adherence, they had the possibility to read more information based on their needs from several links of patient education and support. For example, if a participant received feedback of poor adherence to medical care they were directly guided to links concerning medication. They were also able to enter all the other informational links. The next ACDI was sent to the participants after two (2) and six (6) months.

The control group (n = 51) received traditional patient education and support during their visits to the ophthalmologist. Traditional patient education means usual information delivery during the appointment about the medication, treatments and alternatives, prognosis and future appointments with the ophthalmologist. In some cases patients receive practical advice and information from the nurse such as how and when to insert eye drops.

The control group (n = 51) received the ACDI with the cover letter and an attached envelope via regular post. In the cover letter the participants were asked to answer the questionnaire as soon as possible, although no deadline was stated. The next ACDI was sent to the participants after two (2) and six (6) months, similarly to the test group. The participants mailed the filled-in questionnaire in a sealed envelope to the IT service provider, who entered the data into the database. The participants of the control group did not receive any feedback after answering the ACDI. The participants visited their ophthalmologist as usual (once or twice) during the intervention (six months). The timing, amount and place of visits were not asked.

This study was conducted in collaboration with the IT Company between September 2008–May 2009.

Analysis

The data were analysed with the Statistical Package for the Social Sciences for Windows 15 (spss) software (SPSS Inc., Chicago, IL, USA). There were some missing values which were coded as periods (Polit & Beck 2008). Frequencies and percentages were used to describe the data. Cross-tables and the chi-square test were used to analyse the connections between the variables and sum variables in the baseline. Differences between the groups and measurements were analysed by t-tests and Mann–Whitney U-test.

The baseline data of the test and control groups were analysed together to describe the adherence of glaucoma patients. Sum variables were formed based on factor analysis in earlier studies and named according to the contents of factors (Lunnela et al. 2011). Two variables which were not loaded on factors were analysed separately. The sum variables (SUM1-8) had at least two items. Factors measuring adherence were named adherence to medical care (SUM5), responsibility (SUM6), care planning (SUM8) and carrying out the care (variable 3). A sum variable of good adherence (SUM9) was formed from the sum of these factors. Factors measuring connection to adherence were identified as support from nurses and physicians (SUM1), sense of normality (SUM2), support from relatives and friends (SUM3), motivation and energy (SUM4), consequences of treatments (SUM7) and fear of vision loss (variable 33). Sum variables and single variables were categorised into two categories based on the assumption of earlier studies (Kyngäs et al. 2000, Lunnela et al. 2006), such as when answering ‘totally agree’ (5 points) or ‘partly agree’ (4 points) the respondent was considered to be well adherent. They followed instructions regularly while patients with poor adherence neglect instructions for their care.

Factors related to adherence were analysed by cross-tabulating the categorised sum variable of good adherence (SUM9) with demographic data and other categorised sum variables (SUM1-8) as well as with two single and categorised variables 3 and 33. In the chi-square test the significance was p < 0·05 (Burns & Grove 1997, Polit & Beck 2008).

The results of the two measurements (after two and six months) were analysed separately but equally as the results of the first measurement. This information was used to form a new sum variable, ‘summary measure’, the purpose of which was to measure the change between the measurements (Altman 1991). The ‘summary measure’ was formatted by reducing for example the sum variable of the first measurement (for example SUM1) from the corresponding sum variable of the second measurement. New sum variables were named as:

  •  BSUMero = difference between the first and second measurement.
  •  CSUMero = difference between the second and third measurement.
  •  DSUMero = difference between the first and third measurement.

The means of these SUMero-variables were obtained and analysed using the Independent-Samples t-test and non-parametric Mann–Whitney U-test.

Reliability and validity of ACDI

The ACDI was tested during development by using factor analysis, correlation coefficients and Lisrel analysis. According to these tests, the structural validity and internal consistency of the instrument are good (Kyngäs et al. 2000. The modified ACDI was used and pretested in a pilot study with patients with glaucoma (Lunnela et al. 2006), and it was also used in another study focusing glaucoma patients (Lunnela et al. 2011). The reliability was evaluated using Cronbach’s alpha values, which showed reliability to range from poor to excellent, ranging between 0·04–0·85 (Lunnela et al. 2006) and between 0·01–0·89 (Lunnela et al. 2011) respectively. In this study, the Chronbach’s alpha of five sum variables varies from excellent to acceptable (0·61–0·87), and three sum variables have poor Chronbach’s alpha values (varies from 0·01–0·29). However, these sum variables were based on factor analysis (Lunnela et al. 2011). Low alpha values indicate that the items in these sum variables with low alpha value do not exactly measure the same issue. Combining these sum variables with other sum variables was considered, but their contents did not match. In addition, the factor loadings of these items were also high.

Ethical considerations

The principles of the Helsinki Declaration (World medical association declaration of Helsinki - Ethical principles for Medical Research Involving Human Subjects) were followed. Permission to carry out this study was granted by the hospital director and the Ethics Committee for Gynaecology and Obstetrics, Otology, Ophthalmology, Neurology and Neurosurgery. The subjects were informed in a covering letter stating the aim of the study. They were also informed that participation was voluntary and participating or declining had no impact on their treatment. All participants signed a voluntary consent. Confidentiality aspects were taken into account at the hospital, so that the database could only be accessed by the researcher. The results of the study have been reported honestly. The research material will be obtained, used and stored according to the authors’ host university information management regulations. Regulations will be adhered to and all data collected from participants will be stored, used and destroyed according to regulations.

Results

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Method
  6. Results
  7. Discussion
  8. Conclusion
  9. Contributions
  10. Sources of funding
  11. References

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
 TotalGood adherencePoor adherenceMissing
nn (%)n (%)n (%)
Adherence to medical care SUM57967 (85)5 (6)7 (9)
Responsibility SUM67965 (82)7 (9)7 (9)
Care planning SUM87936 (45·5)36 (45·5)7 (9)
Carrying out the care Variable 37945 (57)27 (34)7 (9)
Adherence to care SUM97960 (76)12 (15)7 (9)
Table 4.   Factors connected to adherence of care, baseline of test and control group
 TotalAdherentPoorly adherentp2)
(n = 72)(n = 60)(n = 12)
nn (% of total)n (% of total)
Factors connected to adherence of care
 Support from nurses and physicians (SUM1)7234 (47)38 (53)0·291
 Sense of normality (SUM2)7253 (74)19 (26)0·042
 Support from relatives and friends (SUM3)7242 (58)30 (42)0·521
 Motivation and energy (SUM4)7270 (97)2 (3)0·200
 Consequences of treatments (SUM7)7265 (90)7 (10)0·050
Fear of vision loss var. 33
 Afraid6553 (81)12 (19)0·213
 Not afraid77 (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 variableTest group = 1 Control group = 2nMean
  1. SUM1: Support from nurses and physicians; SUM5: Adherence to medical care; SUM7: Consequences of treatments; SUM8: Care planning; SUM9: Adherence to care; BSUMero: difference between the first and second measurement; CSUMero: difference between the second and third measurement; DSUMero: difference between the first and third measurement.

BSUM1ero117  0·000
246−0·6304
BSUM5ero117−0·0588
2460·2174
BSUM9ero117−0·3529
2460·0217
CSUM1ero1172·1176
2460·6522
CSUM8ero1170·9412
2460·0435
CSUM9ero1172·4706
2460·7174
DSUM1ero1192·3684
2440·1136
DSUM7ero1190·3684
244−0·2500
DSUM9ero1191·8421
2440·1818

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 variableFirst measurement = 1 Second measurement = 2 Third measurement = 3nMean
  1. SUM1: Support from nurses and physicians; SUM2: Sense of normality; SUM4: Motivation and energy; SUM6: Responsibility; SUM8: Care planning; SUM9: Adherence to care; var. 3: Carrying out the care; var.33: Fear of vision loss.

SUM811712·41
21712·12
SUM911738·53
21738·18
var. 31174·76
2173·94
var. 331171·82
2171·65
SUM121730·82
31932·94
SUM221726·41
31926·29
SUM421719·29
31919·11
SUM62178·71
3199·47
SUM821712·06
31913·00
SUM921738·00
31940·47
var. 32173·88
3194·35
var. 332171·53
3191·58
SUM111731·57
31933·94
SUM411719·68
31919·00
SUM811712·63
31913·47
SUM911739·37
31941·21
var. 31174·05
3194·42
var. 331171·84
3191·73

Discussion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Method
  6. Results
  7. Discussion
  8. Conclusion
  9. Contributions
  10. Sources of funding
  11. References

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).

Limitations

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.

Conclusion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Method
  6. Results
  7. Discussion
  8. Conclusion
  9. Contributions
  10. Sources of funding
  11. References

The key message of this study is that the adherence of people with glaucoma improved with this web-based patient education and support method. Although no statistically significant differences were found, the results of the test group were better than the results of the control group. However, it is remarkable that the results of the control group also improved during the intervention. This indicates that any kind of active contact with the patients leads to better self-care and adherence. To conclude, it is possible to improve chronically ill patients’ adherence and self-care by developing new, time-saving and patient-centred methods using technical equipment. Lastly, we shall not forget that the middle-aged people of today are the older people of the future, and they are already capable of using the computer and other technical equipment.

Contributions

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Method
  6. Results
  7. Discussion
  8. Conclusion
  9. Contributions
  10. Sources of funding
  11. References

Study design: JL, MK, HK; data collection: JL; data analysis: JL and manuscript preparation: JL, MK, HK.

Sources of funding

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Method
  6. Results
  7. Discussion
  8. Conclusion
  9. Contributions
  10. Sources of funding
  11. References

The Finnish Association of Nursing Research and The Finnish Ophthalmic Nurses’ Association.

References

  1. Top of page
  2. Abstract
  3. Introduction
  4. Background
  5. Method
  6. Results
  7. Discussion
  8. Conclusion
  9. Contributions
  10. Sources of funding
  11. References
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