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- MATERIALS AND METHODS
Background: Nonadherence has been reported in over 40% of patients taking maintenance therapies (MT) for inflammatory bowel disease (IBD). Studies in other illness groups have shown that nonadherence is related to negative attitudes to treatment. The aim of this study was to assess patients' attitudes to MT for IBD (beliefs about personal need for MT and potential adverse effects) and to identify whether such beliefs are associated with adherence to MT.
Methods: A cross-sectional survey was conducted in which 1871 members of the National Association for Colitis and Crohn's Disease (NACC) completed validated questionnaires assessing beliefs about MT and adherence to MT.
Results: Low adherence to MT was reported by 29% of participants and was associated with doubts about personal need for MT (odds ratio [OR] = 0.56; 95% confidence interval [CI]: 0.48–0.64; P < 0.001) and concerns about potential adverse effects (OR = 1.66; 95% CI: 1.42–1.94; P < 0.001). Attitudinal analysis showed that while almost half (48%) of the participants were “accepting” of MT (high necessity, low concerns), a large proportion of the sample (42%) were “ambivalent” about MT (high necessity, high concerns), 6% were “sceptical” (low necessity, high concerns) and 4% were “indifferent” (low necessity, low concerns). Compared to those who were “accepting” of MT, participants in all 3 other attitudinal groups were significantly more likely to be nonadherent.
Conclusions: The way in which patients judge their personal need for MT relative to their concerns about MT can be a significant barrier to adherence. Interventions to facilitate optimal adherence to MT for IBD should address such perceptual barriers.
Many treatments effectively reduce relapse rates in patients with IBD1–3 but nonadherence rates of over 40% compromise this effectiveness.4–8 A number of demographic and clinical factors have been associated with nonadherence in IBD.9 Being single,4 male gender,4 3 times daily dosing,7 full-time employment,7 symptomatic remission,7, 10, 11 disease duration,5, 6, 12, 13 and variations in class of medication taken6, 14 have all been associated with lower levels of adherence in IBD. These studies help us to identify “at risk” groups, but clinical and sociodemographic factors are largely unchangeable and further research is needed to identify causes of nonadherence that can be changed. Systematic review of interventions to facilitate adherence have reported disappointing effects and called for more innovative approaches15 that address the proven causes of nonadherence in particular illness groups.16
The causes of nonadherence can be summarized as unintentional and intentional.17 Unintentional nonadherence occurs when the patient intends to take the treatment, but is prevented from doing so by limitations in capacity and resources (eg, forgetting, poor comprehension, lack of funds, etc). Intentional nonadherence, however, occurs when the patient decides not to take medication as advised, and can be understood in terms of preferences and beliefs. While unintentional nonadherence is common among those with IBD,6, 18, 19 intentional nonadherence has also been found to be prevalent among this patient group.13, 18 It follows that interventions to facilitate adherence to medication will be more effective if they address the perceptual factors (eg, beliefs and preferences) influencing motivation to start and continue with treatment, as well as the practical factors (eg, capacity and resources) influencing patients' ability to implement instructions to follow the agreed treatment plan. To facilitate the use of this “Perceptual and Practicalities approach”20 in routine clinical practice, busy clinicians require a simple framework for conceptualizing and understanding the key beliefs influencing adherence. The Necessity Concerns Framework (NCF)21 shows promise in this respect. The NCF posits that treatment adherence is associated with the way in which patients judge their personal need for a prescribed treatment relative to their concerns about its potential adverse effects.
Studies across a range of long-term conditions including renal disease,22 asthma,23, 24 HIV,25, 26 and depression27, 28 have demonstrated the utility of the NCF, with nonadherence related to doubts about personal need for treatment and concerns about potential adverse effects. Moreover, patients' judgments about prescribed medications may be influenced by more general attitudes to pharmaceuticals as a whole (eg, perceptions that medicines are fundamentally harmful, addictive poisons which are overused by doctors).29 Negative attitudes to medicines appear to be prevalent within the community, with many patients being suspicious of medicines.
Few studies have assessed beliefs about medicines among inflammatory bowel disease (IBD) patients,9 but there is some evidence that these issues are also relevant in IBD,30 with negative beliefs about medicines related to nonadherence.11 The aim of this study was to use the NCF to gain insight into the beliefs that are held about maintenance therapies (MT) prescribed for IBD, and to explore the associations between such beliefs and adherence to treatment.
- Top of page
- MATERIALS AND METHODS
This is the largest study of patient adherence in IBD and it provides an insight into some of the drivers for patient behavior. Many participants recognized the necessity of maintenance therapy but some patients clearly had doubts about their personal need for treatment, and almost three-quarters of the sample expressed concerns about the long-term effects of their treatment. Similar concerns have been reported in other patient groups including those with asthma, cardiac disease, renal failure, cancer, and HIV.22, 23, 26, 36 Both intentional and unintentional nonadherence was reported by many participants; increased doubts about personal need for MT, and increased concerns about the MT regimen, were found to be associated with nonadherence.
Participants were categorized into attitudinal groups (accepting, ambivalent, skeptical, indifferent) based on their beliefs about MT. Further analysis across these groups revealed that participants who were “accepting” of MT reported the highest levels of adherence, significantly higher than all other attitudinal groups; those who were “skeptical” about MT (low perceived need, high concerns) were the least adherent of the attitudinal groups. Multivariate analysis showed that attitudinal group significantly predicted nonadherence independent of clinical and demographic factors. Moreover, when compared to those who were accepting of MT, all other attitudinal groups (ambivalent, skeptical, indifferent) were associated with nonadherence.
Analysis of patient demographics and clinical data identified that younger age, longer disease duration (diagnosed 5 or more years ago), and fewer outpatient visits in the previous year (less than 3 versus 3 or more) were associated with poor adherence. Previous research has also reported poorer adherence among younger IBD patients.7, 12 Gender was unrelated to adherence in our study, concurring with previous studies finding no such association.13, 18 Evidence for an association between gender and adherence to treatment for IBD is somewhat inconsistent; a higher incidence of nonadherence to treatment among men with IBD has been reported previously,4 while others have found that females are less adherent to IBD maintenance therapy.14, 37
We found that greater disease duration predicted nonadherence, as did Lopez et al,13 but others report that longer IBD disease duration correlates with improved adherence to medication.5, 6, 12 There were no differences in adherence between UC and CD patients. Those patients with fewer hospital visits were found to be less adherent, but they also represent patients with less active disease.
The clinical and demographic characteristics of nonadherent patients are extensively published9 but largely unchangeable, hence the need for more intelligent assessment. Treatment beliefs are not fixed and offer a realistic opportunity to improve adherence to MT. Understanding the origins of patient beliefs will shape targeted interventions for those patients in the ambivalent, skeptical, and indifferent groups whose adherence levels are significantly lower than patients in the accepting group. This qualitative research will be undertaken by our group in the near future.
Beliefs about IBD were found to influence beliefs about prescribed treatment. Participants who believed in the chronicity of IBD reported greater personal need for MT, whereas weaker beliefs in the longevity of IBD were associated with doubts about personal need for MT. Patients may doubt their personal need for MT because the notion of IBD as a chronic condition, needing continuous treatment, may be at odds with their experience of it as an episodic problem.
We also explored the role of drug class on beliefs about treatment and adherence in those patients receiving monotherapy. No differences were found in beliefs about the necessity of medication across drug groups, but concerns about MT varied across drug groups. Participants who were taking long-term steroids had the highest concerns about their medication and these participants reported the lowest levels of adherence. Previous research has reported that steroids are viewed more negatively than other “regular” IBD medication.30 We found that participants exclusively taking 5-ASA medicines were the least concerned about their MT, which is in line with previous work reporting minimal concerns about 5-ASA medicines.30 Patients were most adherent to immunosuppressants, which is a finding that has also has been reported previously.1, 6, 14
All participants in this study were members of the NACC chosen at random on a 1-in-5 basis. These patients will not be representative of the IBD population as a whole but there is no reason to think that their beliefs about medication necessity and concerns about MT and adherence behavior would be different from the general IBD population. Previous research has reported no differences in adherence rates between NACC members and nonmembers.7 We were disappointed with the questionnaire response rate of 32%, which is typical for this type of study. While we are unable to compare the responders to the general NACC population demographics, our study patient demographics are close to predicted, with a slight excess of females. Our interest lies in the relationship between patient beliefs and adherence, and the results are in line with studies in other chronic conditions.22, 25–28, 34, 36, 38, 39
This study employed a self-report measure of adherence. While it has previously been argued that self-report measures of adherence run the risk of obtaining socially desirable responses, the MARS is framed in a nonjudgmental manner in a bid to minimize occurrences of this. If anything, these measures are likely to underreport nonadherence, resulting in an acceptable type 1 error.