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Keywords:

  • Activities of daily living;
  • self-care agency;
  • multiple sclerosis

Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. Material and Methods
  5. Results
  6. Discussion
  7. Conclusion
  8. References

Purpose

The aim of the study was to present the effects of the disease and analyze the relationship between activities of daily living (ADL) and self-care in multiple sclerosis (MS) patients who have had the disease for the first 10 years.

Design

This study was a descriptive cross-sectional study.

Methods

A total of 67 patients who fit the inclusion criteria of the study and volunteered to participate were included in the sample. Data were collected using the Exercise of Self-Care Agency Scale and the Barthel Index.

Findings

The mean age was 38.43 ± 9.92. There was a statistically significant correlation between participants'educational backgrounds and self-care scores and between disease duration and Barthel index score (< .05).

Conclusions

The self-care levels of patients who have had MS for the first 10 years are medium, and they tend to be mildly dependent in performing their ADL. The duration of MS is positively correlated with level of ADL.

Clinical Relevance

In this study, it was shown that the duration of the disease in MS patients should be taken into account by rehabilitation nurses to implement effective nursing care.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. Material and Methods
  5. Results
  6. Discussion
  7. Conclusion
  8. References

Multiple sclerosis (MS) is a chronic disease that generally appears in young adulthood, influencing many parts of the central nervous system (Anderson et al., 1992). It is characterized by inflammation, demyelization, and glial sclerosis. MS affects over 2 million people worldwide and its prevalence varies by country (Asano, Duquette, Andersen, Lapierre & Mayo, 2013). Its prevalence in Turkey is reported to be 101.4 per 100,000 (Turk, Alp, Sur & Gul, 2006).

Major symptoms in patients with MS include sensory distortions, pain, fatigue, and depression as well as problems with balance and coordination, urinary and fecal elimination, sexual performance, and cognitive processing and functioning (Er & Mollaoglu, 2011; Karhula, Kanelisto, Ruutiainen, Hämäläinen & Salminen, 2013). In the initial phases of the disease, these symptoms do not interfere with activities of daily living (ADL); however, in the advanced stages, these symptoms become more prevalent and may significantly inhibit ADL. Research clearly indicates that these symptoms have negative effects on patients' ADL (Ehde et al., 2003; Einarsson, Gottberg, Fredrikson, Von Koch & Widen Holmqvist, 2006; Karhula et al., 2013; Sartori & Edan, 2006; Winkelmann, Engel, Apel & Zettl, 2007). Although symptoms vary between individuals, they generally intensify within 10 years, with the main negative effects centering on physical decline (Er & Mollaoglu, 2011; Gulick, 1998; Pfaffenberger et al., 2006). Therefore, the negative effects of MS can be revealed through an evaluation of patients' performance of ADL. Limitations in ADL performance in MS have a great impact on the quality of life (Mansonn & Lexell, 2004).

For individuals to carry out their ADL, they require a certain level of self-care agency (Flensner & Lindergrona, 1999). Self-care is defined as an act by which individuals fulfill responsibilities necessary to maintaining their life, health, and well-being, a significant challenge for many patients with MS (O'Hara, Cadbury, Souza & Ide, 2002; Orem, 1991).

Rehabilitation is a significant part of MS management, from the time of diagnosis until death. A major aim of the rehabilitation program is to improve the patient's ADL and self-care by improving strength, endurance, flexibility, mobility, balance, sexual functioning, skin integrity, and safety and by decreasing fatigue, pain, depression, anxiety, and constipation, etc. (Burks, Bigley & Hill, 2009). When MS patients have limitations in ADL performance and lower levels of self-care, their dependency on others increases, with a rehabilitation team providing significant support to MS patients. Rehabilitation nurses especially can help patients improve their ADL and self-care.

Although many studies have examined the performance of ADL and self-care in MS patients, the correlation between these two factors has not been analyzed (Einarsson et al., 2006; Er & Mollaoglu, 2011; Gulick, 2001; Mansonn & Lexell, 2004; Motl & Snook, 2008; O'Hara et al., 2002). Since MS typically more significantly affects patients who have had the disease for more than the first 10 years, the aim of the current study is to present the effects of the disease and analyze the relationship between ADL and self-care in MS patients who have had the disease for the first 10 years.

Material and Methods

  1. Top of page
  2. Abstract
  3. Introduction
  4. Material and Methods
  5. Results
  6. Discussion
  7. Conclusion
  8. References

Design

The study follows a descriptive cross-sectional design. The procedure was approved by an Ethics Committee of the Gulhane Military Medical Academy. After informing participants about the aims of the study, they were asked to fill out the form.

Participants

The participants were MS patients who were treated in the neurology department of a training hospital in Ankara between March and September 2012. This unit cares for nearly 400 MS patients per year. To be eligible for participation, participants had to be over 18, to volunteer for participation, and to be without cognitive or hearing problems. Prospective participants had to have had MS for the first 10 years, with no attacks in the preceding month. During the period of the study, a total of 67 patients were included who fit the inclusion criteria of the study.

Data Collection

Data were collected using a form developed by the authors, composed of eight items assessing participants' sociodemographic characteristics and features of their disease. In addition, data were collected using the Exercise of Self-Care Agency Scale and the Barthel Index. The forms were filled out in a hospital waiting room, and the process lasted 30–40 minutes. The majority of participants (= 59) filled out the forms themselves, whereas eight forms were filled by the researchers since the participants were either illiterate or did not want to fill out the forms themselves.

The Exercise of Self-Care Agency Scale was developed by Kearney and Fleischer in 1979. It was adapted to the Turkish context and tested for reliability and validity by Nahcivan. Nahcivan (2004) found that eight items in the original scale had low correlation values (< .20) [19]. Therefore, the original number of items (43) was reduced to 35 in the Turkish version of the scale. The scale is used to assess individual competence in self-care. Each of the 35 items in the Turkish version is evaluated using a Likert-type scale with 0 = “It does not describe me,” 1 = “It does not describe me wholly,” 2 = “no idea,” 3 = “It slightly describes me,” and 4 = “It completely describes me.” Eight items in the scale are negative statements (3, 6, 9, 13, 19, 22, 26 and 31). The total possible score ranges from 35 to 140. Higher scores indicate higher self-care competency (Nahcivan, 2004). In the current study, Cronbach's alpha was found to be 0.957. Cut-off points were as follows: 24–64 = “not good,” 65–100 = “medium,” 101–112 = “good,” and 113–140 = “very good” (Er & Mollaoglu, 2011).

The Barthel Index was developed by Mahoney and Barthel in (1965) to evaluate patient independence in performing ADL (Mahoney & Barthel, 1965). The reliability and validity of its Turkish version was established by Kucukdeveci et al. (2000), using a sample of neurology patients. In their study, Cronbach's alpha was 0.93. Scores on the Barthel Index range from 0 to 100, with 0 indicating full dependency and 100 indicating complete independence. Prior studies employed the Barthel Index using a score of 60 as a cut-off point; scores above this indicate independent functioning. For the present study, the scoring intervals for the Barthel Index are as follows: 0–20 = “fully dependent,” 21–61 = “very dependent,” 62–90 = “mildly dependent,” 91–99 = “slightly dependent,” and 100 = “independent” (Kucukdeveci et al., 2000).

Statistical Analysis

The data obtained were analyzed using SPSS version 17.0 (Statistical Package of Social Sciences Inc., Chicago, IL). The descriptive statistics of frequency, percentage, mean, and standard deviation were used. Kruskal–Wallis and Mann–Whitney U tests were used to compare patients' sociodemographic characteristics, self-care scores, and Barthel Index scores. For further analysis, the Mann–Whitney U test was employed. The relationship between patients' ADL and their self-care levels was analyzed using Spearman's correlation analysis. The level of statistical significance was set at < .05.

Results

  1. Top of page
  2. Abstract
  3. Introduction
  4. Material and Methods
  5. Results
  6. Discussion
  7. Conclusion
  8. References

Table 1 shows the sociodemographic characteristics of participants. The mean age was 38.43 ± 9.92. The participants were 70.1% female (= 47), and 46.3% (= 31) were university graduates. Regarding marital status, 62.7% (= 42) were married and 12.4% (= 9) were divorced. As per Barthel Index, 79.1% of them are “slightly dependent” (= 53), 10.5% are “mildly dependent” (= 7), 8.9% are “very dependent” (= 6), and 1.5% are “fully dependent.” The mean score for the Exercise of Self-Care Agency Scale was 79.81 (SD = 18.32; range: 39–107).

Table 1. Sociodemographic Characteristics of the Participants
 MeanSD
Age38.439.92
Duration of illness4.683.49
Self-care score79.8118.32
  n %
Gender
Female4770.1
Male2029.9
Educational background
Illiterate46.0
Primary education912.4
High school2334.3
University3146.3
Marital status
Married4262.7
Single1623.9
Divorced912.4
Immunomodulator treatment
Yes4059.7
No2740.3
Barthel index score
Slightly dependent5379.1
Mildly dependent710.5
Very dependent68.9
Fully dependent11.5

Table 2 compares sociodemographic characteristics of participants with scores on the Exercise of Self-Care Agency Scale and the Barthel Index. Scores from both indices were not found to significantly vary by age, gender, or marital status. However, there was a statistically significant correlation between participants' educational backgrounds and Exercise of Self-Care Agency Scale scores (χ2 = 10.12 = .018). Further analysis showed that this difference was for participants with university degrees.

Table 2. Comparison of patients' Sociodemographical Characteristics and Scores of the Exercise of Self-Care Agency Scale and Barthel Index
 Exercise of Self-Care Agency Scale inline image ± SDStatistical AnalysisThe Barthel Index inline image ± SDStatistical Analysis
Age
≤3084.29 ± 16.52

χ2 = 1.080 = .581

Kruskal–Wallis test

94.41 ± 19.27

χ2 = 2.533 = .28

Kruskal–Wallis test

31–4079.10 ± 15.8096.31 ± 12.89
≥4177.57 ± 20.9188.21 ± 19.06
Gender
Male75.89 ± 14.62

Z = −1.309 = .191

Mann–Whitney U test

96.33 ± 9.85

Z = −1.583 = .11

Mann–Whitney U test

Female81.46 ± 19.5982.63 ± 26.68
Educational background
Illiterate69.00 ± 25.07

χ2 = 10.12 = .018

Kruskal–Wallis test

95.00 ± 10.00

χ2 = 4.77 = .12

Kruskal–Wallis test

Basic education65.25 ± 14.8491.25 ± 19.41
High school78.73 ± 17.2893.04 ± 14.59
University86.17 ± 16.6891.55 ± 20.62
Marital status
Married78.14 ± 18.15

χ2 = 4.313 = .116

Kruskal–Wallis test

93.65 ± 13.92

χ2 = 2.662 = .26

Kruskal–Wallis test

Single88.20 ± 13.9593.33 ± 20.67
Divorced72.62 ± 22.9083.12 ± 26.98

Table 3 shows correlations between participants' scores from the Barthel Index, scores from the Exercise of Self-Care Agency Scale, and disease duration. There was no statistically significant correlation between Barthel index scores and Exercise of Self-Care Agency Scale scores (= .125, > .05). However, there was a significant negative correlation between disease duration and Barthel Index score (= −.508; = .01). Therefore, longer disease duration is associated with lower Barthel Index scores.

Table 3. Correlation Between Duration of Disease and Their the Exercise of Self-Care Agency Scale and Barthel Index Scoresb
 The Exercise of Self-Care Agency ScaleThe Barthel IndexDuration of Disease
  1. a

    < .01.

  2. b

    Spearman correlation analysis.

The exercise of self-care agency scale1  
The Barthel index0.1251 
Duration of disease−1.90−0.508a1

Discussion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Material and Methods
  5. Results
  6. Discussion
  7. Conclusion
  8. References

The majority of participants were found to be mildly dependent in performing their ADL, with self-care levels identified as “medium” for 79.1% of the sample. Mollaoglu, Fertelli and Tuncay (2006), O'Hara et al. (2002), and Mansonn and Lexell (2004) similarly concluded that the majority of MS patients have a medium level of self-care agency. A positive finding of the present study is that the majority of participants were only slightly dependent. Er and Mollaoglu (2011) found that 56.7% of the patients in their sample were mildly dependent in performing their ADL, 1.9% of them were very dependent, and 13.5% of them were slightly dependent. In the present study, participants took immunomodulation medication, which seems to improve independence.

The present study found no significant correlation between participants' age, gender, or marital status and the performance of their ADL and self-care. However, self-care levels of MS patients with university degrees were significantly higher. Mollaoglu et al. (2006) found a significant correlation between self-care levels of MS patients and sociodemographic characteristics. Similarly, Tekir, Sevinc, Karadag and Karadakovan (2012) found that older adults with higher levels of education had higher levels of self-care as compared to those with lower levels of education. Much research has suggested that higher educational levels are associated with higher levels of self-care, and that education improves individuals' attitudes toward health care (Idiman, Ozakbas, Cagiran & Ormeci, 2004). This finding suggests that support from nurses may be more important for MS patients with lower levels of education.

The symptoms experienced by MS patients generally increase with duration since the onset of the disease (Nortvedt et al., 2007; Rizzo, Hadjimichael, Preiningerova & Vollmer, 2004; Sèze, Ruffion, Denys, Joseph & Perrouin-Verbe, 2007). Although no correlation between disease duration and self-care levels was found in the present study, there was a statistically significant correlation between duration and performance of ADL. Generally speaking, the longer the duration of disease, the higher the level of dependency. Gulick (1998) also found that the longer the duration of the disease, the more negative the effects on the performance ADL. Pfaffenberger et al. (2006) found that those patients who had had MS for 10–27 years had much greater problems performing ADL. Idiman et al. (2004) also found that the longer the duration of MS, the lower the quality of life.

The findings of the present study clearly show that patients' dependency levels and self-care levels are substantially affected by MS for the first 10 years. The assessment of the baseline ADL and self-care may be useful in decision-making before undergoing rehabilitation therapy and could help in the process of guiding individualized rehabilitation programs. Therefore, changes in patient abilities should be regularly assessed, and should be taken into consideration to best support MS patients and their families.

This study has several limitations. First, the results of this study only represent the population studied; thus, it is difficult to generalize all individuals with MS. Second, the sample size is rather small.

Conclusion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Material and Methods
  5. Results
  6. Discussion
  7. Conclusion
  8. References

The results of this study have confirmed that the self-care levels of patients who have had MS for the first 10 years are, on average, medium, and they tend to be mildly dependent in performing their ADL. The duration of MS is positively correlated with performance level of ADL. Disease duration is one of the most significant variables that reflects potential problems encountered by patients with regard to their ADL.

Rehabilitation nurses are responsible for improving the patient's ADL and self-care by giving educational and counseling services. When planning nursing interventions for MS patients, the duration of the disease should be taken into consideration by rehabilitation nurses. Measuring the level of ADL and the level of self-care in MS patients with longer disease duration is very important for decreasing the disability and describing the limitations and for implementing effective nursing care.

We recommend that similar studies be carried out with larger samples and different demographic compositions.

Key Practice Points
  • The assessment of the ADL and self-care may be useful in decision-making before undergoing rehabilitation therapy.
  • MS patients' self-care level is medium for the first 10 years.
  • ADL performance is mildly affected by MS for the first 10 years.
  • MS duration is one of the most significant variables for ADL.

References

  1. Top of page
  2. Abstract
  3. Introduction
  4. Material and Methods
  5. Results
  6. Discussion
  7. Conclusion
  8. References
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