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Keywords:

  • chronic illness;
  • coping;
  • patient teaching;
  • psychological well-being;
  • randomised controlled trials;
  • self-efficacy

Abstract

  1. Top of page
  2. Abstract
  3. Background
  4. Methods
  5. Results
  6. Discussion
  7. Implications for further research
  8. Relevance to clinical practice
  9. Conclusion
  10. Acknowledgements
  11. Contributions
  12. Funding
  13. Conflict of interests
  14. References

Aims and objectives

To investigate the long-term effect of a nurse-led hospital-based patient education programme combining group and individual education for patients with chronic inflammatory polyarthritis.

Background

Patient education interventions have shown short-term effects, but few studies have investigated whether the effects are sustained for a longer period.

Design

Randomised controlled trial.

Methods

Patients with rheumatoid arthritis, psoriatic arthritis and unspecified polyarthritis were randomised to the intervention group (n = 71) or a waiting list (n = 70). Primary outcomes were as follows: Global Well-Being and the Arthritis Self-Efficacy Other Symptoms Subscale. Secondary outcomes were as follows: patient activation, physical and psychological health status, patients' educational needs and a Disease Activity Score (DAS28-3).

Results

The intervention group had a statistically significant higher global well-being than the controls after 12 months, mean change score 8·2 (95% CI, 1·6–14·8; p-value = 0·015), but not in the Arthritis Self-Efficacy Other Symptoms Subscale, mean change score 2·6 (95% CI, −1·8 to 7·1; p-value = 0·245). Within each group, analyses showed a statistically significant improvement in DAS28-3, mean change -0·3 (95% CI, −0·5 to −0·1; p-value = 0·001), in the intervention group from baseline to 12 months, but not in the controls. The controls had a statistically significant deterioration in the Arthritis Self-Efficacy Other Symptoms Subscale, mean change −5·0 (95% CI, −8·6 to −1·3; p-value = 0·008), Arthritis Impact Measurement Scales – 2 Social, mean change 0·3 (95% CI, 0·1–0·5; p-value = 0·008), and Hospital Anxiety and Depression Scale total, mean change 1·4 (95% CI, 0·3–2·5; p-value = 0·013).

Conclusion

A combination of group and individual patient education has a long-term effect on patients' global well-being.

Relevance to clinical practice

Nurses should consider whether a combination of group and individual patient education for patients with chronic inflammatory polyarthritis is an alternative in their clinical practice. This combination is less time-consuming for the patients, and it includes the benefit of group learning in addition to focusing on patient's individual educational needs.


Background

  1. Top of page
  2. Abstract
  3. Background
  4. Methods
  5. Results
  6. Discussion
  7. Implications for further research
  8. Relevance to clinical practice
  9. Conclusion
  10. Acknowledgements
  11. Contributions
  12. Funding
  13. Conflict of interests
  14. References

Chronic inflammatory polyarthritis as rheumatoid arthritis (RA) and psoriatic arthritis (PsA) has a reported prevalence of 0·5% (Uhlig et al. 1998) and 0·2% (Madland et al. 2005), respectively. RA is most common in middle-aged women (3:1); common symptoms include pain, fatigue, inflammation of joints and irreversible joint damage with functional losses if the disease remains active and uncontrolled (Harris 2005). PsA usually occurs when patients are in their early forties (Zink et al. 2006); common symptoms are inflammation of peripheral joints and manifestations of skin, nails and spine (Madland et al. 2005, Mease 2011). Medical treatment options for patients with RA and PsA consist of nonsteroidal anti-inflammatory drugs (NSAIDs), disease-modifying antirheumatic drugs (DMARDs) and biological agents (Madland et al. 2005, Scott et al. 2010).

Patients with RA and PsA have similar complaints, they experience coping as a balancing process (Gronning et al. 2011), and the psychological and social consequences of living with chronic arthritis are often addressed in patient education interventions (Barlow et al. 2002, Sinclair & Blackburn 2008). The recommendations of European League Against Rheumatism (EULAR) for management of early arthritis focus on 12 key points including pharmacological and nonpharmacological interventions like education programmes (Combe et al. 2007).

Patient education is often offered to patients in groups or individually. Group education facilitates patients' learning from each other, while individual education is easier to tailor to patients' individual needs (Newman et al. 2004). In the field of rheumatology, individual patient education is often delivered by nurses (Firth 2011) and covers a great variety of aspects related to living with arthritis, for example medical treatment, motivation to carry out exercise programmes, joint protection, energy conserving and nonmedical pain management (Makelainen et al. 2009). Individual consultations with an expert nurse have shown to have a positive influence on patients' ability to control and cope with arthritis (Ryan et al. 2006).

Five reviews (Savelkoul 2003, Niedermann et al. 2004, Riemsma et al. 2004, Albano et al. 2010, Iversen et al. 2010, Knittle et al. 2010) have summarised that group-based patient education or self-management interventions show small short-term effects in patients with chronic inflammatory polyarthritis, but the evidence on long-term effects is inconclusive. Five relatively old studies of group-based interventions (Parker et al. 1988, 1995, Taal et al. 1993, Lindroth et al. 1997, Scholten et al. 1999) along with more recent studies (Hammond & Freeman 2004, Masiero et al. 2007, Hammond et al. 2008) have demonstrated beneficial long-term effects, while others have not (Brus et al. 1998, Helliwell et al. 1999, Giraudet-Le Quintrec et al. 2007, Mayoux-Benhamou et al. 2008, Rudd et al. 2009). One study showed improvements in patient coping, knowledge and satisfaction, but the intervention was not found effective on the primary outcomes after one year.

Very few studies have investigated whether a combination of group and individual education for patients with chronic inflammatory polyarthritis is effective. The randomised controlled study (RCT) by Nunez and colleagues (Nunez et al. 2006) showed that a combination of group and individual education in addition to pharmacological treatment had beneficial effects six months post-treatment. Another RCT (Hammond et al. 2004) of a combination of group and individual education did not find that intervention as effective one year post-treatment.

We have previously published an article on the short-term effect of a nurse-led intervention combining group and individual self-management education for patients with chronic inflammatory polyarthritis (Grønning et al. 2012). The intervention showed to have effect on the primary outcomes, general well-being and self-efficacy, compared with usual care. Given the lack of studies looking at long-term effects of patient education, the aim of this study was to investigate the long-term effects of this intervention.

Methods

  1. Top of page
  2. Abstract
  3. Background
  4. Methods
  5. Results
  6. Discussion
  7. Implications for further research
  8. Relevance to clinical practice
  9. Conclusion
  10. Acknowledgements
  11. Contributions
  12. Funding
  13. Conflict of interests
  14. References

This study was an open pragmatic parallel-group randomised controlled trial conducted in the period from January 2008–March 2010 in Central Norway. The study was approved by the Regional Ethics Committee for Research in Medicine, Central Norway.

Participants

Eligible participants were patients aged between 18–80 years and diagnosed with RA, PsA or unspecified polyarthritis (UA) according to the International Statistical Classification of Diseases and Related Health Problems (ICD-10; M05.8, M05.9, M06.0, M07.0, M13.0, L40.5, M07, M13.0). Two exclusion criteria were set: having participated in patient education during the past 12 months and not being able to discuss the content in the programme (the language spoken was Norwegian). To recruit patients, an invitation letter was mailed to eligible patients treated at the Department of Rheumatology in 2007. Those who responded were contacted by the first author, an appointment was made, and the ones who fulfilled the inclusion criteria signed the consent form and became enrolled in the study.

Assignment

The randomisation was carried out after the baseline data collection. The participants were allocated to the intervention or control group using an Internet Web-based trial service provided by the Norwegian University of Science and Technology. The block randomisation was computerised with stratification for sex. Everyone involved in the study was blinded to the size of the blocks. The participants were informed about their assignment immediately after the randomisation. The controls were put on a waiting list, and the intervention was offered to them after their last ordinary follow-up (12 months postbaseline). In the meantime, the controls received treatment as usual (consisted of scheduled appointments of physical therapy, occupational therapy or other visits to the Department of Rheumatology). The scheduled appointments were determined by the patients' disease-modifying antirheumatic treatment (DMARD) regimes and disease progression. The participants in the intervention group received the intervention within two weeks after the randomisation.

The intervention

The intervention, content and mode of delivery are described elsewhere (Grønning et al. 2012). In summary, the intervention consisted of three group sessions every other week, followed by one individual educational session. The group sessions were moderated by two nurses, and the individual educational session was held within two weeks after the last group session by one of the group moderators.

Each group session lasted for three hours. The individual educational session lasted approximately 45 minutes. The topic ‘arthritis process’ (symptoms, symptom circle and prognosis) was held at the first group session, followed by ‘medical treatment regimens’ (including how to observe side effects) in the second group session. ‘Healthy life style’ (exercise, food/diet) and ‘community resources’ were discussed in the last group session. Other topics were as follows: coping (problem-solving, self-management, how to live with arthritis, challenges, sharing experiences of emotions, symptoms, fear, self-doubt and sorrow), motivation and goal setting were addressed in all the group sessions. The content of the individual educational session was decided by the patient, but it always included a talk concerning how the patients had experienced the disease lately and whether the patients had worked with any health goals. The patients were also asked whether they needed further information about their disease, medications, coping, exercise or nutrition.

Masking

There was no masking, neither the patients, educators nor assessors were blinded.

Outcome measures

Data consisted of patients' self-reported socio-demographic status (gender, age, marital status, education, employment status, income). Education was recorded as a categorical variable according to the Norwegian school system: 10 years (elementary school), 11–12 years (college) and >13 years (university). Furthermore, self-administered questionnaires assessing coping, self-efficacy, physical and psycho-social health status, self-reported use of health services, a 28-joint count (performed by the first author) and a C-reactive protein (CRP) drawn at the hospital's laboratory or at the participants' general practitioner's office were collected. The reliability and validity of the selected outcomes are reported in the article reporting the short-term effect (Grønning et al. 2012).

Primary outcomes

The primary outcomes, the Arizona Integrative Outcomes Scale (AIOS) (Bell et al. 2004) and the Arthritis Self-Efficacy Other Symptoms Subscale (SE symptoms) (Lorig et al. 1989, Brekke et al. 2003) were chosen because the intervention focused on the overall impact of living with arthritis and how to cope with challenges and symptoms related to having arthritis.

  • Well-being: The Arizona Integrative Outcomes Scale (AIOS) (Bell et al. 2004), a one-item 100-mm-long visual analogue self-rating scale (VAS) with the instructions ‘Reflect on your sense of well-being during last month. Take into account your physical, mental, emotional, social, and spiritual condition and mark the line for your summarized overall sense of well-being’. The anchoring points were ‘worst you have ever been’ (0) and ‘best you have ever been’ (100) (Bell et al. 2004).
  • Self-efficacy: The Arthritis Self-Efficacy Other Symptoms Subscale (SE symptoms), scoring range from 10 (lowest)–100 (best) (Lorig et al. 1989, Brekke et al. 2003).

Secondary outcomes

  • Coping: Patient Activation Measure (PAM) (Hibbard et al. 2005, Steinsbekk 2008) and the Arthritis Self-Efficacy Other Pain Subscale (SE pair) (Lorig et al. 1989).
  • Psycho-social health status: Five subscales from The Arthritis Impact Measurement Scales – 2 (AIMS2) (Meenan et al. 1992) and the Hospital Anxiety and Depression Scale (HADS) (Zigmond & Snaith 1983).
  • Physical health status: The Modified Health Assessment Questionnaires (Pincus et al. 1983).
  • Indicators of disease activity: The Disease Activity Score (DAS28-3) calculated using CRP and the 28-joint count (number of swollen and tender joints) (van der Heijde et al. 1990, Wolfe 1997). VASs were used to assess patients' global assessment, pain and tiredness during the last week before the appointments (Lati et al. 2010).
  • Educational needs: The Educational Needs Assessment Tool – 2 (Hill et al. 2008, Zangi et al. 2008).
  • Other data: Number of self-reported rheumatology outpatient consultations, other hospital outpatient consultations, hospital admissions, rehabilitation, physiotherapy and consultations with general practitioners during the past three months and self-reported changes in employment status, medical treatment and physical activity. The intervention group was also asked an open-ended question: ‘Our experience is that people with chronic diseases might experience changes in themselves after they have participated in organised patient education. We wonder if you could describe whether you have experienced any changes in yourself. Feel free to write down whatever comes to your mind, even though you think it does not matter’.

Sample size

The sample size was calculated to detect a moderate effect size of 0·5 in SE other symptoms (Cohen 1992). We used an estimated standard deviation of 17 based on a previous study (Brekke et al. 2003), giving 8·5 (17*0·5) as the smallest difference worth detecting in SE other symptoms. The significance level was set to 5% with a power of 80%, which gave 63 persons in each group. We decided to include 140 subjects to allow for dropouts.

Statistical analyses

Intention to treat (ITT) and per-protocol analyses were performed at 12 months. Only results from the ITT analyses are reported as no differences between the ITT analyses and per-protocol analyses were found. Missing data were replaced by the method of last value carried forward. Analysis of covariance (ancova) adjusted for the outcomes' baseline values was used to estimate between-group differences at 12 months. Paired t-tests were used to analyse changes from baseline to 12 months within each group in continuous variables (Altman 1991). Mann–Whitney U-test was used to estimate between- and within-group differences in ENAT-2 (nonparametric data) and chi-squared test for categorical data. Level of statistical significance was set to p < 0·05 and trend to p ≤ 0·10 (two-sided tests). spss, version 18.0 (SPSS Inc., Chicago, IL, USA) was used for all analyses.

In the exploration of the intervention group, paired t-tests were used to investigate whether men (n = 23) and women (n = 48) responded differently to the intervention at 12 months. The intervention group's responses to the open-ended question were categorised into four areas.

Results

  1. Top of page
  2. Abstract
  3. Background
  4. Methods
  5. Results
  6. Discussion
  7. Implications for further research
  8. Relevance to clinical practice
  9. Conclusion
  10. Acknowledgements
  11. Contributions
  12. Funding
  13. Conflict of interests
  14. References

Recruitment and retention

The trial's flowchart is shown in Fig. 1. It is presented according to the CONSORT Statement Extension for Randomised Controlled Trials of Non-Pharmacological Trials (Boutron et al. 2008). An invitation letter was mailed to groups of 70–80 eligible participants until we reached the sample size. Of the 536 invitations, 35% responded and a total of 141 subjects were randomised (71 to the intervention group and 70 to the control group). Four persons in the intervention group did not receive allocated intervention, and only six per cent (n = 9) were lost to follow-up at 12 months.

image

Figure 1. Flow diagram.

Download figure to PowerPoint

Baseline characteristics

The sample consisted of 44 (31%) men and 97 (69%) women with a mean age of 58 years (SD 11). Fifty-three (38%) had a university level of education (≥13 years), 41 (29%) were employed, 87 (62%) had a diagnosis of RA, 35 (25%) had PSA, and 19 (13%) were classified as having UA. The mean disease duration was 12 years (SD 13), 114 (81%) used one or several DMARD, 36 (26%) used nonsteroid anti-inflammatory drugs (NSAID) or coxibs, 46 (37%) used oral cortisone, and 54 (38%) took daily analgesics. More than 50% had one or more additional diseases. Eighty per cent (n = 70) of the participants with RA were women and 20% were men (n = 17). The female/male split in PsA or UA was equal (27:27). The analyses of the participants' baseline characteristics showed no statistically significant differences between the intervention and control groups except from amount of exercise, where several controls (52, 74%) exercised more than once a week compared with the intervention group (44, 62%, p-value = 0·02).

Between-group differences at 12 months

The analyses showed a favourable statistically significant difference in patients' global well-being (AIOS) at 12 months, mean change score 8·2 (95% CI, 1·6–14·8; p-value = 0·015) (Table 1). There was no statistically significant difference in arthritis SE other symptoms the other primary outcome, mean change score 2·6 (95% CI, −1·8 to 7·1; p-value = 0·245). Between-group analyses of secondary outcomes showed trends for differences in PAM-13, AIMS2 Affect and DAS28-3 in favour of the intervention group.

Table 1. Outcome measures at 12 months
Outcome measuresGroupBaselineBetween-groupWithin-group
mean (SD)Mean (SD)Difference (95% CI) p Difference (95% CI) p
  1. AIOS, Arizona Integrative Outcomes Scale; SE symptoms, self-efficacy other symptoms; SE pain, self-efficacy pain; PAM 13, Patient Activation Measure-13; AIMS, Arthritis Impact Measurement Scales – 2; VAS, visual analogue self-rating scale; MHAQ, Modified Health Assessment Questionnaires; HADS, Hospital Anxiety and Depression Scale; DAS28-3, Disease Activity Score; [DOWNWARDS ARROW], better; [UPWARDS ARROW], worse; INT, intervention, CTRL, controls.

  2. Between-group analysis: analysis of covariance (ancova) adjusted for baseline values. Within-group analyses: paired t-test. Trend for significance p ≤ 0·100 (italicised).

  3. a

    Level of significance p < 0·05.

AIOS [UPWARDS ARROW]

(0–100)

INT53·1 (21·9)57·6 (21·0)8·2 (1·6, 14·8)0·015a4·5 (−0·9, 9·9)0·104
CTRL51·5 (21·7)48·8 (22·4)  −2·7 (−8·4, 3·0)0·341

SE symptoms [UPWARDS ARROW]

(10–100)

INT67·9 (17·7)66·4 (18·4)2·6 (−1·8,7·1)0·245−1·4 (−4·4, 1·5)0·333
CTRL71·2 (13·5)66·2 (16·8)  −5·0 (−8·6, −1·3)0·008a

SE pain [UPWARDS ARROW]

(10–100)

INT57·7 (19·5)56·9 (20·7)−0·4 (−5·4, 4·6)0·879−0·8 (−4·9, 3·3)0·713
CTRL59·7 (17·0)58·6 (17·5)  −1·1 (−4·6, 2·5)0·553

PAM 13 [UPWARDS ARROW]

(0–100)

INT65·7 (13·3)67·4 (15·7)3·9 (−0·3, 8·0) 0·069 1·7 (−1·5, 4·9)0·299
CTRL65·6 (16·4)63·5 (16·8)  −2·1 (−5·2, 0·9)0·165

AIMS2 social [DOWNWARDS ARROW]

(0–10)

INT4·0 (1·4)4·2 (1·3)−0·1 (−0·4, 0·2)0·5600·2 (−0·1, 0·5)0·144
CTRL4·1 (1·3)4·4 (1·4)  0·3 (0·1, 0·5)0·008a

AIMS2 pain [DOWNWARDS ARROW]

(0–10)

INT5·2 (2·4)4·7 (2·8)−0·2 (−0·9, 0·4)0·473−0·5 (−1·0, 0·0) 0·071
CTRL5·3 (2·5)5·0 (2·5)  −0·2 (−0·7, 0·3)0·342

AIMS2 role [DOWNWARDS ARROW]

(0–10)

INT3·0 (2·5)2·9 (2·4)−0·1 (−1·3, 1·1)0·872−0·1 (−1·1, 0·9)0·864
CTRL2·7 (2·1)2·6 (2·6)  −0·1 (−1·0, 0·9)0·894

AIMS2 affect [DOWNWARDS ARROW]

(0–10)

INT3·4 (1·5)3·2 (1·4)−0·3 (−0·7, 0·0) 0·062 −0·1 (−0·4, 0·1)0·346
CTRL3·2 (1·4)3·5 (1·8)  0·2 (−0·0, 0·5)0·058

VAS pain [DOWNWARDS ARROW]

(0–100)

INT46·3 (24·1)41·9 (25·2)−4·8 (−12·6, 3·0)0·224−4·4 (−10·5,1·6)0·147
CTRL41·4 (23·0)44·6 (25·6)  3·2 (−3·5, 9·9)0·350

VAS tiredness [DOWNWARDS ARROW]

(0–100)

INT44·3 (26·0)49·9 (27·1)2·3 (−5·1, 9·7)0·5345·6 (−0·8, 12·0) 0·084
CTRL49·6 (25·4)50·6 (25·5)  0·9 (−4·4, 6·3)0·729

VAS disease activity

(0–100) [DOWNWARDS ARROW]

INT46·0 (25·5)43·3 (27·5)−2·5 (−11·0, 6·1)0·565−2·7 (−9·2, 3·8)0·409
CTRL46·9 (24·4)46·1 (27·4)  −0·7 (−8·3, 6·8)0·845

MHAQ [DOWNWARDS ARROW]

(1–4)

INT1·5 (0·3)1·5 (0·4)−0·0 (−0·2,0·1)0·371−0·0 (−0·1, 0·1)0·699
CTRL1·4 (0·4)1·5 (0·4)  0·1 (−0·0, 0·2) 0·066

HADS total [DOWNWARDS ARROW]

(0–42)

INT9·4 (6·7)9·6 (6·4)−1·2 (−2·7, 0·4)0·1330·2 (−0·9,1·3)0·747
CTRL9·0 (6·3)10·4 (7·3)  1·4 (0·3, 2·5)0·013a
DAS28-3 [DOWNWARDS ARROW]INT3·1 (1·0)2·8 (0·9)−0·2 (−0·5, 0·0)0·101−0·3 (−0·5, −0·1)0·001a
CTRL3·2 (1·0)3·1 (1·0)  −0·2 (−0·4, 0·1)0·135
Hospital health servicesINT1·5 (1·5)2·4 (2·2)−0·1 (−1·0, 0·7)0·7990·9 (0·4, 1·4)0·001a
CTRL1·2 (1·6)2·4 (2·9)  1·2 (0·5, 1·9)0·002a
Other health servicesINT4·7 (8·1)5·0 (6·9)−0·6 (−2·8, 1·6)0·5890·3 (−1·9, 2·4)0·812
CTRL4·1 (6·8)5·2 (7·9)  1·2 (−0·2, 2·7) 0·100

There were no statistically significant differences regarding ENAT-2, employment status, amount of exercise, medical treatment regime changes or use of hospital-based health services (rheumatology outpatient consultations, other hospital outpatient consultations, hospital admissions) or other health services (rehabilitation, physiotherapy and consultations to general practitioners) between the intervention and control groups at 12 months.

Within-group differences

The within-group analyses from baseline to 12 months for the intervention group (Table 1) showed a statistically significant improvement in DAS28-3 and increased number of hospital-based health services. There were no statistically significant changes in any other outcome measures. The within-group analyses for the control group (Table 1) showed a statistically significant worsening in the primary outcomes, arthritis SE other symptoms, but no change in global well-being. Furthermore, the analyses showed a statistically significant worsening in AIMS2 social and HADS total, and an increased use of hospital-based health services.

Further analysis within the intervention group

The subgroup analysis of the intervention group (Table 2) showed a statistically significant improved PAM and DAS28-3 score among women and a statistically significant deterioration in arthritis SE pain among men from baseline to 12 months.

Table 2. Changes in the intervention group from baseline to 12 months for men (n = 23) and women (n = 48)
 GroupBaseline mean (SD)12-month mean (SD)Mean change p
  1. AIOS, Arizona Integrative Outcomes Scale; SE symptoms, self-efficacy other symptoms; SE pain, self-efficacy pain; PAM 13, Patient Activation Measure-13; AIMS2, Arthritis Impact Measurement Scales – 2; VAS, visual analogue self-rating scale; MHAQ, Modified Health Assessment Questionnaires; HADS, Hospital Anxiety and Depression Scale, DAS28-3, Disease Activity Score; [DOWNWARDS ARROW], better; [UPWARDS ARROW], worse.

  2. Within-group analyses: paired t-test.

  3. a

    Level of significance p < 0·05.

AIOS [UPWARDS ARROW]

(0–100)

Female55·0 (21·5)58·1 (22·0)3·1 (−3·3, 9·4)0·332
Male49·3 (22·6)56·7 (18·9)7·3 (−3·5, 18·2)0·172

SE symptoms [UPWARDS ARROW]

(10–100)

Female71·3 (16·5)71·1 (15·0)−0·1 (−4·0, 3·8)0·957
Male60·8 (17·8)56·6 (21·3)−4·3 (−8·7, 0·2)0·060

SE pain [UPWARDS ARROW]

(10–100)

Female59·7 (21·1)62·8 (19·5)3·2 (−2·2, 8·5)0·234
Male53·5 (15·2)44·5 (17·7)−9·0 (−14·1, −3·8)0·002a

PAM 13 [UPWARDS ARROW]

(0–100)

Female67·3 (13·5)71·5 (14·4)4·2 (0·0, 8·3)0·048a
Male62·3 (12·4)58·9 (15·0)−3·5 (−8·2, 1·2)0·140

AIMS2 social [DOWNWARDS ARROW]

(0–10)

Female3·9 (1·4)4·1 (1·3)0·2 (−0·1, 0·4)0·230
Male4·2 (1·2)4·4 (1·4)0·3 (−0·4, 1·0)0·387

AIMS2 pain [DOWNWARDS ARROW]

(0–10)

Female5·3 (2·6)5·0 (2·8)−0·4 (−1·0, 0·3)0·244
Male4·8 (2·0)4·2 (2·6)−0·7 (−1·6, 0·3)0·146

AIMS2 role [DOWNWARDS ARROW]

(0–10)

Female2·3 (2·3)2·4 (2·4)0·0 (−0·8, 0·9)0·921
Male2·9 (2·8)2·6 (2·5)−0·3 (−3·1, 2·5)0·797

AIMS2 affect [DOWNWARDS ARROW]

(0–10)

Female3·4 (1·4)3·4 (1·4)−0·0 (−0·3, 0·3)0·854
Male3·3 (1·7)3·0 (1·5)−0·3 (−1·0, 0·3)0·253

VAS pain [DOWNWARDS ARROW]

(0–100)

Female46·8 (25·0)44·5 (26·7)−2·3 (−10·1, 5·5)0·554
Male45·2 (22·8)36·3 (21·2)−8·9 (−18·5, 0·7)0·069

VAS tiredness [DOWNWARDS ARROW]

(0–100)

Female44·5 (26·8)49·4 (28·0)4·9 (−3·8, 13·6)0·264
Male43·9 (24·9)51·0 (25·8)7·1 (−1·6, 15·8)0·103

VAS global [DOWNWARDS ARROW]

(0–100)

Female47·3 (26·6)46·3 (28·5)−1·0 (−9·4, 7·4)0·809
Male43·1 (23·3)36·9 (24·7)−6·2 (−16·5, 4·1)0·222

MHAQ [DOWNWARDS ARROW]

(1–4)

Female1·5 (0·4)1·5 (0·4)0·0 (−0·1, 0·1)0·453
Male1·5 (0·3)1·4 (0·4)−0·0 (−0·2, 0·1)0·615

HADS total [DOWNWARDS ARROW]

(0–42)

Female8·9 (6·6)9·4 (6·4)0·5 (−0·8, 1·9)0·419
Male10·5 (6·7)9·9 (6·5)−0·6 (−2·8, 1·7)0·602
DAS28-3 [DOWNWARDS ARROW]Female3·3 (1·1)2·9 (0·9)−0·3 (−0·6, −0·1)0·010a
Male2·8 (0·8)2·5 (0·8)−0·3 (−0·6, 0·0)0·061

Thirty-nine patients, 55% of the intervention group, answered the open-ended question (Table 3). The length of the answers varied from one single sentence to a couple of pages. The responses were categorised into four themes: knowledge, confidence and disease control, behaviour changes and coping is still difficult. Each theme is elaborated with examples. The responses reflected that some patients experienced more confidence and disease control, increased knowledge about the arthritis process and how the arthritis influenced their lives. A few patients described behaviour changes, while a few explicitly expressed that they had not changed. Some patients experienced that coping with arthritis still was difficult.

Table 3. Intervention group's responses at 12 months (n = 39)
ThemesResponses
KnowledgeGained knowledge on ‘overall’ knowledge, reasons for pain, nutrition, physicalactivity, ‘energy conservation’, medicines, patient's rights practical advices, where to seek help
Did not learn anything new
Confidence and disease controlExperienced increased understanding of the disease process, have come to more acceptance of the disease, become more confident through sharing experiences, listen more to the body
Behaviour changesChanged eating habits, increased physical activity, valuable ‘overall’ general changes, started on new medications
Experienced no changes
Coping is still difficultIt is still difficult to deal with pain, to judge the disease and to act in accordance with the ‘surroundings’; it is too little support from others, and it is difficult to deal with the system
Suggested follow-up courses for patients and courses for the patients' partners or next of kinds

Discussion

  1. Top of page
  2. Abstract
  3. Background
  4. Methods
  5. Results
  6. Discussion
  7. Implications for further research
  8. Relevance to clinical practice
  9. Conclusion
  10. Acknowledgements
  11. Contributions
  12. Funding
  13. Conflict of interests
  14. References

This intervention has already shown short-term effects on patients' Global Well-Being and Arthritis Self-Efficacy Other Symptoms Subscale (Grønning et al. 2012). This study showed that a small to moderate long-term effect, effect size = 0·4 (Cohen 1992), on global well-being still was present after 12 months. However, the CI was rather wide ranging from 1·6–14·8. The interpretation of this wide-ranging CI is that there may be a bit uncertainty related to the estimated value of well-being.

The short-term effect on patients' Arthritis Self-Efficacy Other Symptoms Subscale was no longer present at 12 months. The intervention appears to have prevented long-term deterioration in patients' arthritis self-efficacy as the control group had a significant deterioration, while the intervention group did not.

Lack of maintenance of the proven short-term effect on arthritis self-efficacy other symptoms may have several explanations. First of all, the intervention focused on the overall perspective of living with chronic inflammatory arthritis (Grønning et al. 2012) with lectures on common symptoms in RA and PsA, disease process and prognosis, how disease complaints influenced patients' lives and the impact of disease on patients' physical, mental and social well-being. Following the lectures, the participants discussed how they experienced living with arthritis. As a result of having more focus on the overall perspective of living with chronic inflammatory arthritis, it is possible that the intervention focused too little on the areas covered by the arthritis self-efficacy other symptoms scale; for example patients' self-efficacy in dealing with fatigue, regulating activity, coping with mood and frustrations, or dealing with pain during daily activities. According to self-efficacy theory (Bandura 1997), fostering self-care behaviours needs time and practice. Self-care behaviours involve acquisition of practical skills to manage pain, fatigue, physical limitations and coping (emotional challenges, symptom unpredictability, stress and anxiety) (Katz 2005). Although such topics were addressed, no practices of self-management skills were included in the intervention.

Second, length and content of the intervention may also be of relevance. This nurse-led intervention was developed in cooperation with patients and health professionals in terms of format, duration, content and delivery (Grønning et al. 2012) and addresses similar topics as other beneficial patient education programmes (Riemsma et al. 2003, Giraudet-Le Quintrec et al. 2007, Hammond et al. 2008). The unique feature of the intervention in our study was that the topics were addressed in a group-setting with a mixture of lectures and discussions before it was tailored to the individual participant in a one-to-one educational session. However, other interventions with beneficial outcomes such as increased self-efficacy (Riemsma et al. 2003, Hammond et al. 2008) and coping (Giraudet-Le Quintrec et al. 2007) are different in length and duration, and they were held over a longer period of time and included booster sessions. In our study, the intervention was delivered in 10 hours without boosters. One beneficial intervention includes three-two-hour booster sessions where the last booster was offered after nine months, and the boosters were given in addition to 10 hours of education delivered over a period of five weeks (Riemsma et al. 2003). Another intervention consisted of two modules; each module included four 2·5-hour meetings and a two-hour review meeting over a period ranging from three to nine months depending on the individual participants' requests (Hammond et al. 2008). The most comprehensive intervention included six hours of education once a week over eight consecutive weeks followed by a four-hour booster session after six months (Giraudet-Le Quintrec et al. 2007). On the other hand, a recent pilot study may indicate that amount of education is not necessarily the most important aspect, because a one-day educational programme showed beneficial effect one year later (Kennedy et al. 2011).

Other explanations could be related to socio-demographic characteristics. This study sample was highly educated. Level of education may have influenced the coping abilities because the baseline level of self-efficacy in this sample was higher than that in a comparable study (Hammond et al. 2008). It is thus possible that highly educated patients are more active in collecting relevant information (e.g. on consequences of having arthritis and how to cope with these) resulting in greater coping abilities. Furthermore, it is possible that patient education does not facilitate an additional increase in patients' self-efficacy if the baseline scores are high.

The short-term beneficial outcomes on patient activation and pain (Grønning et al. 2012) were no longer present at 12 months. There was a statistical trend for group difference in activation, but no statistically significant differences in VAS pain. The review of therapeutic patient education in RA (Albano et al. 2010) detected only few effective interventions, mainly with short-lived beneficial effects on pain, fatigue, functional status, anxiety, depression and health behaviours. However, a literature review on theoretical perspectives of arthritis pain (Keefe & Somers 2010) emphasised that emotions, cognitions and social context variables were important factors related to arthritis pain and that interventions focusing on pain coping skills training were beneficial in decreasing arthritis pain, psychological distress and arthritis-related disability.

The intervention and control groups' baseline exercise patterns in this study were also different. The controls reported more exercise than the intervention group. At 12 months, no statistical differences in exercise pattern between the groups were present. Nevertheless, fewer in the intervention group reported never to exercise or exercised less than once a week, while more exercised daily or two-three times a week. Motivation to exercise is described as an important content of patient education provided by rheumatology nurses (Makelainen et al. 2009). This intervention did not include exercise, but lectures and discussions about beneficial outcomes from exercise (the theme ‘healthy life style’) were discussed (Grønning et al. 2010). Moreover, this nurse-led patient education intervention is ‘protective’ by maintaining patients' health, because the controls had a statistically significant worsening in arthritis self-efficacy other symptoms, AIMS social and HADS total from baseline to 12 months. The intervention group maintained the same levels throughout the study period. Also, the qualitative responses from the participants in the intervention group revealed that some patients experienced increased confidence and disease control. However, a few participants thought it was difficult to cope (managing pain and judging their disease).

A statistically significant decrease in the intervention group's DAS28-3 score was observed, with a trend for a group difference. The decrease in DAS28-3 may have several explanations. It is known that early use of DMARD is crucial to avoid persistent and erosive arthritis (Donahue et al. 2007). Individual education is found to be suitable for better adherence to medical treatment (Hill et al. 2001, van den Bemt et al. 2009). In this intervention, the topic ‘medical information’ was addressed by a physician in a group session, the use of medication was discussed within the group, and it was individually tailored in the one-to-one educational session. Medical information covered aspects related to taking medication as prescribed, possible side effects and self-monitoring (blood tests and observe bodily changes). We did not measure adherence, but the participants' qualitative responses covered descriptions of increased knowledge about medicines after attending the patient education intervention. It is thus possible that increased knowledge entailed a more conscious attitude about taking medicines as prescribed to keep the arthritis under control.

It is important to identify for whom patient education is most beneficial (Newman et al. 2004, Riemsma et al. 2004, Hammond et al. 2008). We investigated whether men and women responded differently to this nurse-led patient education intervention. The results must be taken with precaution because the sample size was not calculated to detect gender differences. The sample consisted of fewer men than women (1:2), but was considered as representative for the population studied. The analysis showed that men and women responded similarly to the intervention in the majority of outcomes: global well-being, arthritis self-efficacy other symptoms, psycho-social health status and physical health status. However, women showed a statistically significant improvement in activation and DAS28-3, while men had a statistically significant deterioration in arthritis self-efficacy pain and a trend for improved DAS28-3. The interpretation of these results may be that the men in this sample were more reluctant about discussing their self-efficacy in coping with pain. It is suggested that men tend to avoid actions, which could evoke feelings of vulnerability (sharing concerns with others or revealing their physical disability) (Lack et al. 2011).

Strengths and limitations

The major strength of this study was the long-term follow-up and the randomisation. The low dropout rate (6%) decreased the chance of making a type II error. Furthermore, the dropout rate is lower than reported in comparable studies (Giraudet-Le Quintrec et al. 2007, Hammond et al. 2008). One limitation is the lack of blinding. However, blinding is difficult because the patients would know whether they took part in an educational programme or not. It could have strengthened the study if the assessors of clinical outcomes (joint counts) were blinded, but this was not feasible due to practical issues. Another limitation is that the study was only powered in relation to arthritis self-efficacy other symptoms and not the other primary outcome, patients' global well-being. Furthermore, a possible limitation is the chance of selection bias because the intervention was delivered during the daytime. It is possible that eligible patients in paid employment chose not to respond to the invitation because they prioritised their job. The employment rate in our sample was lower, twenty-nine per cent, compared with thirty-eight per cent reported in other studies (Hammond et al. 2008, Reinseth et al. 2010). Our population was similar on age, marital status, disease duration (Hammond et al. 2008, Reinseth et al. 2010), self-efficacy (Reinseth et al. 2010) and medical treatment (Hammond et al. 2008).

Implications for further research

  1. Top of page
  2. Abstract
  3. Background
  4. Methods
  5. Results
  6. Discussion
  7. Implications for further research
  8. Relevance to clinical practice
  9. Conclusion
  10. Acknowledgements
  11. Contributions
  12. Funding
  13. Conflict of interests
  14. References

The results from this study have implications for further research. Future studies should include economic analyses because the cost/benefit of such programmes is of interest for providers of health care (Richardson et al. 2008).

Relevance to clinical practice

  1. Top of page
  2. Abstract
  3. Background
  4. Methods
  5. Results
  6. Discussion
  7. Implications for further research
  8. Relevance to clinical practice
  9. Conclusion
  10. Acknowledgements
  11. Contributions
  12. Funding
  13. Conflict of interests
  14. References

Nurses in charge of developing, organising and evaluating patient education for patients with chronic inflammatory arthritis ought to consider whether combining group and individual education is an alternative. This combination is less time-consuming for the patients, and it includes the benefit of group learning and a possibility of having an individual focus on patients' educational needs in the one-to-one educational session.

Conclusion

  1. Top of page
  2. Abstract
  3. Background
  4. Methods
  5. Results
  6. Discussion
  7. Implications for further research
  8. Relevance to clinical practice
  9. Conclusion
  10. Acknowledgements
  11. Contributions
  12. Funding
  13. Conflict of interests
  14. References

This nurse-led patient education intervention for patients with arthritis has a long-term beneficial effect on patients' global well-being, but not on self-efficacy. However, the intervention thus seems to be protective in maintaining patients' self-efficacy and psycho-social health status.

Acknowledgements

  1. Top of page
  2. Abstract
  3. Background
  4. Methods
  5. Results
  6. Discussion
  7. Implications for further research
  8. Relevance to clinical practice
  9. Conclusion
  10. Acknowledgements
  11. Contributions
  12. Funding
  13. Conflict of interests
  14. References

We would like to thank all the patients who participated in this study. We also thank the research nurse who helped us in identifying eligible patients.

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  2. Abstract
  3. Background
  4. Methods
  5. Results
  6. Discussion
  7. Implications for further research
  8. Relevance to clinical practice
  9. Conclusion
  10. Acknowledgements
  11. Contributions
  12. Funding
  13. Conflict of interests
  14. References
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