Towards a better understanding of reasons for non-adherence to treatment among patients with rheumatoid arthritis: A focus group study

Abstract

Objective:

To explore common reasons for non-adherence to treatment in patients with rheumatoid arthritis in Singapore.

Methods:

Patients diagnosed with rheumatoid arthritis for ⩾ 1 year being followed up at the Singapore General Hospital and meeting pre-defined criteria of non-adherence were invited to participate in focus groups to discuss issues related to adherence to their rheumatoid arthritis treatment. Each focus group was homogenous in terms of gender, language spoken and ethnicity. Discussions were audio recorded and subsequently transcribed verbatim for thematic analysis.

Results:

Of the 26 patients who participated in the study, seven reported non-adherence to medication, two reported non-adherence to doctors’ appointments, and 11 reported non-adherence to both. The most commonly mentioned reasons for non-adherence were forgetfulness (n=13), low perceived need for treatment (n=10), actual or perceived medication side effects (n=6) and intentional delay due to busyness (n=4). Eleven participants acknowledged more than one of these four reasons for non-adherence.

Conclusion:

There are multiple reasons for non-adherence to treatment among patients with rheumatoid arthritis in Singapore. Findings from this study provide important empirical evidence to inform strategies to improve adherence and in turn treatment outcomes for this group of patients in Singapore.

Keywords

Non-adherence focus groups rheumatoid arthritis

Significance and innovations

To provide an in-depth understanding of reasons for non-adherence to treatment among patients with rheumatoid arthritis in Singapore.

To inform the development of intervention programmes to improve adherence to treatment among patients with rheumatoid arthritis in Singapore.

Introduction

Adherence to medical therapy is a major determinant of successful treatment outcomes for chronic diseases.^1,2 However, non-adherence is common, especially after the first six months of therapy in patients with chronic diseases.^3–5 This undermines the effectiveness of disease control and increases healthcare costs.⁶

Adherence to drug therapy in patients with rheumatoid arthritis (RA) has been found to range from 30% to 64%,^7–9 leading to poor functional outcomes¹⁰ and even permanent joint damages in extreme cases,¹¹ low productivity at work and higher costs for employers.¹² Reasons for non-adherence published in the literature include forgetfulness, financial costs, attitude and beliefs about medication.^10,13,14 As cost of treatment varies across healthcare systems and attitudes and beliefs about medication are shaped by cultural orientations, the same constellation of factors that account for non-adherence in other societies may not be adequate to explain non-adherent behaviour in Singapore. Even within the same healthcare system, cost of treatment (e.g. treatment relying on generic drugs) for one disease may differ significantly from another (e.g. treatment relying on non-generic drugs). Therefore, reasons of non-adherence must be understood in the context of disease, healthcare system and culture. This study aims to explore common reasons for non-adherence to RA treatment from the perspective of patients with RA in Singapore receiving treatment from a public hospital.

Methods

Study design and participants

In this Institutional Review Board approved study, we identified potentially non-adherent RA patients from an existing database of 1006 RA patients being followed up at the Singapore General Hospital, the largest public tertiary care hospital in Singapore. Participants were selected based on the following three criteria: (1) having RA for ⩾ 1 year, (2) taking self-administered oral medication for RA, and (3) potentially non-adherent to treatment, defined using criteria derived from the literature^15–20 as summarized in Table 1. We applied these criteria to the administrative databases from 2006 to 2011 to identify eligible patients. Written informed consent was taken from all participants.

Table 1.

Pre-defined criteria for non-adherence.

Not filling a prescription for rheumatoid arthritis medication more than 20% of the time

Missing more than two consecutive prescriptions fillings

Missing more than 20% of scheduled appointments

Missing more than two consecutive appointments

One or more inpatient admissions due to a flare of rheumatoid arthritis with reported non-adherence documented in the medical record

One or more Emergency Department visits due to a flare of rheumatoid arthritis with reported non-adherence documented in the medical record

Focus groups

Each group had 2–4 participants of the same gender and ethnicity and speaking the same language (either English or Chinese) to facilitate participants’ comfort in sharing their thoughts and feelings. The moderator (supported by a note taker) encouraged subjects to speak freely. In order to ensure consistency in prompts and probes across the focus groups, a list of guiding questions¹⁰ that sought to investigate treatment and medical appointment barriers was used as a guide. Each focus group lasted for approximately one hour. Discussions were audio recorded and subsequently transcribed verbatim for thematic analysis.

Using the WHO theoretical framework whereby adherence is understood as a result of interactions of five dimensions, namely socioeconomic-, therapy-, patient-, condition- and healthcare system-related factors,² the transcripts were analysed by two coders for emerging themes of reasons for non-adherence. Coding was first performed independently by the coders. Later, they met to resolve discrepancies found in their respective analysis. Themes agreed by both coders are reported below.

Results

Ten focus group discussions were conducted from September 2010 to October 2011. One hundred and ninety-two patients were invited to participate in the study and 26 actually did so (Median (range) age 55 (31–64) years, Chinese:Malay:Indian 13:9:4; male:female 4:22). Seven participants disclosed instances of non-adherence to taking medication, two reported instances of missing doctors’ appointments and 11 reported having done both. Among the 10 themes of reasons for non-adherence identified (Table 2), forgetfulness (n=13), low perceived need for treatment (n=10) and medication side effects (n=6) (either actual side effects from treatment (a therapy-related factor) or fear of possible side effects from treatment (a patient-related factor)) were the most common. Additionally, intentional delay in treatment due to busyness was also cited as a significant cause (n=4).

Table 2.

Reasons for non-adherence.

WHO five-dimensions of non-adherence	Themes	n	Elaboration
Socioeconomic-related factors	High cost of treatment	2	Due to financial difficulty, one participant pushed back medical appointment and continued taking old medication instead of adhering to the medication change as instructed by the doctor. Another patient skipped medical appointment and sought cheaper alternative remedy by visiting a Chinese physician
Therapy-related factors	Side effects from treatment	3	Participants had actual experience of side effects from medication and hence skipped medication as an attempt to stop the side effects
	Leftover medication from earlier appointment	3	Participants chose not to come for medical appointment because they had existing medication from their previous appointment
Patient-related factors	Forgetfulness	13	Participants had a tendency to forget either taking medication (n=10), attending doctor’s appointment (n=2) or both (n=1)
	Low perceived need for treatment	11	Participants with self-perception of stable condition perceived low need for treatment, hence they either skipped or reduced their medication dosage (n=5), skipped medical appointment (n=3) or both (n=3)
	Intentional delay in treatment due to busyness	4	Participants due to busy work schedule either intentionally postponed their medical appointment (n=3) or both medical appointment and timing of taking medication (n=1)
	Fear of possible side effects from treatment	3	Participants experienced intense fear of the possibility of side effects from long-term consumption of medication and therefore self-reduced their medication as a preventive measure
	Strong dislike for medication	3	Participants chose not to take their medication due to strong innate dislike for it
	Fear of dependence on medication	1	Participant skipped medication for two weeks due to fear of growing dependency on medication from long-term consumption
	Discouraging feelings	1	Participant felt discouraged from having to take medication for many years and therefore started to skip taking, then went on to stop taking completely
Condition-related	None was recorded in this category
Healthcare system-related	None was recorded in this category

WHO: World Health Organization.

Forgetfulness

Forgetting about a treatment regime (n=13) was the most commonly quoted reason for non-adherence by participants in our study. This was more prominent for taking medication (n=10) than for attending doctors’ appointments (n=2) or both (n=1). Among these 13 participants, almost half of them reported busyness as the main cause of their forgetting about treatment regimes. As one of them mentioned, ‘Especially because I spend a lot of time of the week rushing around, doing a lot of things. Quite easy to forget.’ Different patterns of forgetting treatment did occur: ‘Sometimes I forgot the folic acid the following day,’ said one participant, and ‘Sometimes when I go to function I forget,’ said another [italics added by the authors]. When asked if pillboxes may help them to remember taking their medication, it was revealed that pillboxes are generally perceived by the participants to be associated with ‘old people’ and ‘babies’.

Low perceived need for treatment

Perception of their disease being stable and thus needing little or no treatment was one of the most important driving forces for non-adherence (n=10). Participants acknowledged that they perceived their condition as being stable when they did not experience severe pain in their joints and would consequently reduce or skip their medication. As explained by one participant, ‘The doctors usually tell us how much to take, then I will usually cut down the dosage. When I don’t feel so much pain, I cut down.’ Similarly, participants reported that when their condition improved, they would skip routine medical appointments as they did not think that it was necessary. One participant said it aptly: ‘When we feel okay, we feel like not going to see a doctor.’

Side effects: actual or fear of possible side effects

Side effects from medication were expressed as a major concern for participants in our study (n=6). The actual experience of a side effect led three participants to stop medication. As mentioned by one participant, ‘I felt very uneasy, no appetite, and the stomach bloated up.’ When asked if she omitted her medication, she replied, ‘Yeah, because of the uneasiness that I have.’ For the other three participants, an intense fear of possible side effects (rather than any experience of an actual side effect) caused them to reduce, but not omit, their medication to prevent these feared side effects. For example, a participant on methotrexate remarked, ‘In fact I am supposed to take eight, but I don’t dare, so I take six.’ Another patient concurred that she ‘cut down to four’ without seeking her doctor’s advice or informing him.

Intentional delay in treatment due to busyness

Four participants delayed their treatment because of their busy work schedules. As opposed to those who reported that they forgot about their treatment regime unintentionally due to busyness, these were deliberate decisions made by the participants to either defer taking medication by a few hours or postpone a medical appointment. For instance, in one focus group session, a participant admitted that keeping to a planned appointment date was a challenge due to the busy nature of her work.

Discussion

To the best of our knowledge, this is one of the few studies investigating reasons for non-adherence from the patients’ perspective in Singapore in the context of disease, healthcare system and culture. In this study, we have identified four common reasons for non-adherence to RA treatment from the patients’ perspective in Singapore: forgetfulness, low perceived need for treatment, side effects, and intentional delay in treatment due to busyness.

In line with other studies that identified forgetfulness as a common cause of non-adherence,^21–25 the participants in our study also quoted forgetfulness, generally for taking medication, as one of the major causes of non-adherence. Interestingly, despite strong evidence of the advantages of medication pillboxes,²⁶ usage among participants was low, possibly due to negative stereotype of pillboxes as an aid for the elderly or babies but not for adults. Cognitive alteration of negative associations tied to adherence aids and patient education on the benefits of taking medication according to the prescribed schedule can be a possible solution to address non-adherence due to forgetfulness. Simultaneously, behavioural strategies such as association of taking medication with daily events/activities^27,28 can also be taught and reinforced.

For another group of participants, busyness at work resulted in subjects forgetting to follow their treatment regime. This highlights the potential risk of non-adherence among the working population, especially those with a busy work schedule or a busy lifestyle. For these individuals, prioritization of treatment should be emphasized along with addressing the behaviour of attending to other commitments at the expense of their health.

Participants revealed a tendency to associate RA mainly with the experience of pain. Having little or no pain was perceived as an improvement in the patient’s RA or even as complete recovery, and the need for continued treatment was thus not perceived as being essential. Furthermore, positive reinforcement occurred when their non-adherence (e.g. omitting or reducing medication) did not cause any adverse effect on their condition. However, patients were not aware of the relatively long period of time taken for the effect of disease-modifying anti-rheumatic drugs to wear off. In the published literature, it was likewise found that patients would not take medication deemed unnecessary,²⁹ and being able to function with the lowered dosage is perceived as an indicator of improved condition.³⁰ It is noteworthy that RA patients could possibly have learnt how to reduce their medication from doctors as it is a common practice for the latter to initiate a reduction in medication doses after RA has been stable for a period of time. Alternatively, it could be that after an initial reduction by the doctors, patients anticipated further reduction shortly. When this did not happen for an extended period of time, patients would reduce it themselves. To intervene, patients should be informed that RA is a chronic disease and not having any pain does not mean full recovery. Additionally, self-reducing medication may potentially cause the disease to flare and increase suffering.

Some participants were apparently ill-informed about the side effects of medication. For the handful who omitted medication following the experience of side effects, unawareness of the possibility of side effects from medication caught them off-guard when these first occurred. For those who reduced medication due to the intense fear of possible side effects, professional help is needed to establish a coping mechanism for them to fend off the fears caused by hearing negative information about their medication such as ‘not good for health’, ‘dangerous’ or ‘will cause disease’.

In conjunction with another qualitative study of RA patients that found strong concerns relating medication toxicity and potential side effects,³¹ many of our participants expressed similar worries. This is a cause for concern as it could likely contribute to patients’ apprehensiveness towards medication, consequently heightening the risk for non-adherence. Therefore, early intervention to contain patients’ fear should be done by sharing the medication risk–benefit ratio while concurrently dismissing incorrect information from unreliable sources. Moreover, patients should be encouraged to come for regular medical check-ups and be reassured that their health will be monitored and their safety is of utmost importance.

Limitations

Our study needs to be viewed in the light of two major limitations. Firstly, although the sample had reached saturation in terms of the range of reasons for non-adherence, the relatively small sample size could potentially affect the frequency of each possible reason captured and thereby affect the ordering of these reasons based on the number of participants who cited them. Secondly, social desirability may have caused their responses to be aligned with dominant social norms or beliefs,³² and therefore may have limited the identification of reasons that tend to be viewed socially as negative. We speculate that cost did not emerge as a reason for non-adherence as a result of this social desirability effect. Future studies may consider in-depth interviews with individual patients to overcome this problem, at least to a certain extent.

Concluding remarks

In conclusion, this study provides important insights into the reasons for non-adherence to RA treatment in Singapore from the patients’ perspective. Many patients reported more than one reason for non-adherence, which is in line with the multifactorial World Health Organization conceptual framework of adherence. Based on the reasons for non-adherence, effective intervention strategies can be formulated to improve patients’ adherence to treatment which would consequently result in better treatment outcomes. Insights provided by participants in this study can also form the basis of a screening questionnaire to classify patients based on the reasons for non-adherence and design targeted interventions accordingly.

Footnotes

Acknowledgements

The authors appreciate the support of the SingHealth/Duke-NUS Academic Medicine Research Institute and the medical writing assistance of Taara Madhavan (Associate in Clinical Sciences, Duke-NUS Graduate Medical School).

Declaration of conflicting interests

The authors declare that there is no conflict of interest.

Funding

This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

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