- Research article
- Open Access
The challenges of assessing patients' medication beliefs: a qualitative study
BMC Health Services Research volume 17, Article number: 119 (2017)
An estimated 50% of patients do not take their medication as prescribed, with medication adherence associated with adverse outcomes and higher costs of care. The Necessity-Concerns Framework identified individual’s beliefs about their medication as playing a key role in adherence, and UK Clinical Adherence Guidelines recommend eliciting and incorporating individual’s perceptions of their medication within the consultation. The Beliefs about Medicines Questionnaire (BMQ) is widely used to assess medication beliefs, however, given the condition-specific nature of some self-management regimens, it is unknown whether this tool is able to fully capture beliefs about more complex medication regimens.
We examined the challenges of assessing medication beliefs using the BMQ in 20 people with a complex relapsing-remitting condition recruited from community sources. Data were collected from people with psoriasis; a patient group characterised by complex medication regimens, which include therapies that are applied topically, phototherapy/photochemotherapy, and therapies that are administered orally or via subcutaneous or intravenous injections. Semi-structured cognitive interviews were undertaken, with responses coded using established schedules and analysed using Content analysis.
Individual’s beliefs about their condition specific therapies were not accurately captured by the BMQ. Medication beliefs as expressed during ‘real-time’ completion of the BMQ were underestimated, or failed to be captured, by the corresponding scores given by participants.
There was mismatch between the terminology used in the scale and individuals perceptions of their condition and the complexity of its management and treatment outcomes. Currently the BMQ cannot represent beliefs about medicines underuse, even though some individuals with psoriasis viewed access to therapies as overly restrictive. Some the BMQ items were misinterpreted in part due to ambiguous item wording or due to misreading by participants.
This is the first study to identify general and condition-specific difficulties experienced by individuals completing the BMQ in ‘real time’. The main implication of this research is the need to develop condition-specific versions of the BMQ in order that this important instrument can capture the full range of medication beliefs in individuals living with a complex relapsing-remitting condition. Access to condition-specific versions could significantly increase our understanding of beliefs which facilitate or reduce medication adherence.
The effectiveness of medical therapies reported in clinical trials are usually based on atypical levels of medication adherence. Whilst it is recognized that such outcomes may not be replicated in ‘real world’ clinical practice, patients need to be optimally adherent to their medication in order to achieve the best clinical outcomes. Adherence is defined as the extent to which the patient’s behaviour (medication usage) matches agreed recommendations from the clinician . High levels of adherence is a crucial component of effective self-management for many people living with long-term conditions (LTCs) and viewed as one of the key mediators between medical practice and clinical outcomes. However adherence rates in those with LTCs are low, with people typically taking only half of their prescribed medication . The World Health Organisation  views non-adherence as an important public health concern, with implications for treatment response , mortality , and additional healthcare costs, including increased number of hospital admissions and appointments, wasted resources, disease progression and need for more aggressive medications [1, 6].
The UK National Institute for Health and Care Excellence (NICE) Medicines Adherence Guidelines  recognise that non-adherence can be unintentional, referring to unforeseen barriers beyond the control of the patient, or intentional, in which the patient makes a deliberate decision not to follow the prescribed medication regimen. In order to support shared medication decision-making and adherence, they recommend that individual’s beliefs about their condition and medication should be appropriately elicited and incorporated by the clinician within the consultation. This approach has been shown to be effective in supporting medication adherence [8, 9]. According to the Necessity-Concerns Framework [10, 11], key beliefs that influence medication adherence are perceptions of personal need for medication for current and future health (necessity beliefs) and concerns about potential negative consequences. The Beliefs about Medicines Questionnaire (BMQ)  is the tool most commonly used to assess and quantify beliefs about prescribed medication and medicines in general. Items from the BMQ are also included in the NICE Guidelines as illustrative questions that could be asked to the patient in a consultation.
The BMQ was originally developed to assess commonly held beliefs representative of all illnesses [10, 11], however many medication regimens are condition-specific, with LTCs involving a range of different complex and sometimes unique medication challenges. It is unknown whether the BMQ can capture condition-specific beliefs. Indeed, the association between medication beliefs and adherence has not been demonstrated in all studies, and there are marked differences in effect sizes [13, 14]. Whilst it is clear that this variation may reflect differences in clinical populations, the contribution of other factors that influence adherence, and differences in the definition and assessment of adherence [13, 15], one important consideration is whether condition-specific beliefs are fully captured by existing BMQ items.
One example of a complex condition associated with considerable medication challenges is psoriasis, a common incurable inflammatory skin condition  affecting approximately 2-3% of the general population in the UK . Although psoriasis can occur at any age, the majority of cases occur before the age of 30 years . It is generally characterised by well-delineated thick, red and heavily scaled plaques and people have to manage considerable psychological and social morbidity [19, 20], complex medication regimens and adherence difficulties [21, 22]. Mild, localised disease may be treated with topical therapies (gel, ointment, lotion) by a general practitioner (GP; family doctor), whilst more severe disease may be managed in specialist dermatology (hospital) settings with phototherapy or photochemotherapy (light therapy) or traditional systemic (tablets) or biologic therapies (injections) that have immunosuppressant properties . Typically individuals may move from one therapeutic approach to another. They may also be required to cope with concerns about unwanted medication adverse effects, uncertainty about the degree of disease control achieved by their medication, unpredictable relapsing and remitting symptoms, perceptions of incurability, inadequate understanding about the causes of psoriasis, widespread treatment dissatisfaction and a perceived lack of support from clinicians [24–29]. Unlike many other LTCs, there is evidence to suggest that a large proportion of people with psoriasis believe that their condition is not treated sufficiently aggressively .
In order to improve our understanding of the influences on medication adherence, the aim of this qualitative study was to examine whether items in the BMQ are able to fully capture the complexity of condition-specific medication beliefs, using psoriasis as an exemplar of a relapsing-remitting condition where complex medication challenges are present.
Using purposive sampling, people with a diagnosis of psoriasis who were 18 years or over were recruited from community venues (e.g. places of worship, libraries, community halls) and from a national established patient support association in England. No relationship with potential participants was established prior to study commencement. A participant information pack (PIS) was sent to 75 potential participants who responded to the study advertisement, with interested participants asked to contact the researcher to schedule an interview. The PIS provided information about the researcher and the reasons for the study. A separate study (different research questions and analytic methods) using the same participant sample has been published .
Cognitive interviewing (sometimes known as the ‘think-aloud’ approach) [30–32] is a technique whereby participants verbalise and report what they are thinking about as they solve a problem or complete a task, and has been used to examine the content validity of several questionnaires [33–36]. It can be used to identify how individuals experience completing a questionnaire and the degree to which items capture the constructs they purport to measure, and thus has an important role in the development and evaluation of questionnaires alongside other psychometric assessments.
Using this technique, participants were asked to ‘think-aloud’ and mark their chosen response option for each item of the BMQ. Participants were instructed to answer each item in response to their current prescribed therapy. For those using a combination regimen, participants were asked to complete the BMQ twice; they discussed the items in relation to their primary (phototherapy/photochemotherapy or systemic therapy) and secondary therapy (topical therapy) separately. Once they had completed the BMQ, participants were asked to suggest any other medication beliefs not included in the current version of the BMQ. The use of prompts was limited in order to allow participants to verbalise their own thought processes, however if it was necessary to further elucidate any problems or difficulties they identified when responding to questionnaire items, then a structured prompt was used (Table 1). Participants documented their demographic, medication and disease history before each interview. The recruitment procedures continued until data saturation was reached (no new themes emerging). Interviews were conducted during October 2011 and February 2012 at a location convenient for them; participants were reimbursed for any travel expenses but were not paid for participation. Only the participant and the interviewer were present during interviews; the mean duration was 90-min and were conducted, audio recorded verbatim and transcribed by one author (R.J.T.). The interviewer was a health psychology researcher with experience and training in qualitative methodology. The interpretative components were undertaken using secondary validation by a second author (L.C.). The multidisciplinary research team (health psychologist, dermatologist, and pharmacist), engaged in ongoing discussion to achieve consensus on data coding and to reduce interviewer bias and assumptions.
The BMQ  is an 18-item measure comprising of two subscales assessing beliefs about medication as whole, relating to the nature of medication (general harm) and beliefs about how they are used by doctors (general overuse), and two subscales assessing beliefs about medication prescribed for a specific condition, relating to perceptions about the personal need for medication (specific necessity) and concerns about potential negative effects from medication (specific concerns). The following are representative items in the BMQ-Specific subscale: ‘My life would be impossible without my psoriasis medication’ and ‘I sometimes worry about the long-term effects of my psoriasis medication’. Example items in the BMQ-General subscale are: ‘Doctors use too many medicines’ and ‘People who take medicines should stop their treatment for a while every now and again’. Satisfactory reliability and validity coefficients have been reported . Each item is scored on a 5-point scale, ranging from ‘strongly disagree’ (=1) to ‘strongly agree’ (=5), with higher scores indicating stronger medication beliefs. The BMQ-Specific items were adapted so that the instructions referred to the participant’s prescribed psoriasis therapy. One additional item was included in the BMQ (‘Doctors use too few psoriasis therapies’) to assess whether participants believe access to psoriasis therapies is overly-restrictive.
Content analysis  was used to explore the challenges of assessing medication beliefs using the BMQ, by coding the experiences of responding to BMQ items. The a priori coding framework was based on schedules used in previous cognitive interview studies [34, 36] and was applied systematically to the data (Table 2). Data were analysed in three stages. First, data for each BMQ domain was analysed separately. Second, data were coded using the a priori coding framework. Third, data were analysed into themes that derived from the data, with these themes presenting the rationale for the initial data coding.
A final sample of 20 people demonstrated interest and agreed to participant in the study, with 14 people recruited from a support website and 6 recruited from the community (Table 3).
Specific necessity domain
Of the five specific necessity questions, one question (‘My psoriasis medications protect me from becoming worse’) did not generate problems relating to item content (Code 2) and two questions (‘My psoriasis medications protect me from becoming worse’ and ‘Without my psoriasis medications I would be very ill’) did not generate problems relating to misinterpretation (Code 3). The analysis produced four themes for the specific-necessity domain (Table 4).
Theme 1: Illness identity
Participants viewed psoriasis as being a separate and distinct entity from their perceptions of disease, with psoriasis described as a difficult and distressing ‘condition’, rather than a life-threatening illness. Participants objected to some of the terminology used in the specific necessity scale, in particular the terms ‘health’, ‘ill’ and ‘impossible’, because these terms did not match with their perceptions of psoriasis.
“I can understand why people would define psoriasis as an illness, but I suppose I tend to see it more as a condition.” (P4, specific necessity Q3 ‘Without my psoriasis medications I would be very ill’, item response ‘disagree’, score 2/5)
Some participants perceived their psoriasis medication as ‘necessary’, whilst others viewed medication as having little impact on physical comfort, psychological and social well-being. Due to the terminology used in the scale, these items could under-estimate medication necessity beliefs as expressed in the interviews, with some participants choosing to disagree with the specific-necessity statements. Thus, these questions could not differentiate responses given by individuals who believed that their psoriasis medication was necessary and those who did not.
“…It can be very sore, it can be very itchy, it can drive you mad…I would maybe be quite depressed about the whole thing, but I don’t think it would make me ill” (P14, specific necessity Q3 ‘Without my psoriasis medications I would be very ill’, item response ‘disagree’, score 2/5)
“My life wouldn’t be impossible, but it would be more difficult and I would feel socially a lot more conscious. And I’m sure without them my psoriasis would be a lot more worse than it is.” (P11, specific necessity Q2 ‘My life would be impossible without my psoriasis medications’, item response ‘disagree’, score 2/5)
Theme 2: Illness outcomes
Participants thought that terms used in the BMQ items such as ‘health’, ‘life’ and ‘ill’ were too broad to capture the complexity of psoriasis management and questioned whether the terms were referring to the management of physical symptoms, psychological or social well-being.
“Well in fairness, do they mean mental health or physical health…?” (P7, specific necessity Q1 ‘My health, at present, depends on my psoriasis medications’, item response ‘disagree’, score 2/5)
Beliefs in whether psoriasis medications helped to manage physical symptoms or psychological/social well-being were not necessarily the same, however the BMQ does not differentiate between these different outcomes.
“…I think that the social impact that the physical symptoms would give me, as opposed to the physical symptoms themselves, would make me ill. It would probably make me very sad, very depressed.” (P11, specific necessity Q3 ‘Without my psoriasis medications I would be very ill’, item response ‘uncertain’, score 3/5)
Theme 3: Medication side-effects
Due to the broad terminology used in the specific necessity scale (e.g. the term ‘health’), some participants misinterpreted the items about perceived need for psoriasis therapies for current and future health. Some mistakenly referred to the impact of potential medication adverse effects on future health, rather than discussing perceived need for psoriasis therapies for managing current and future psoriasis symptoms. This resulted in scores being an inaccurate representation of their medication necessity beliefs.
“I don’t know whether any of the medications will have impacted on any of my internal organs.” (P16, specific necessity Q4 ‘My health in the future will depend on my psoriasis medications’, item response ‘agree’, score 4/5)
Theme 4: Alternative medications
Many people with psoriasis will use different types of psoriasis therapy over the course of their condition, due to inter-individual medication response and changes to the severity of the condition. Furthermore, medications can lead to adverse effects and efficacy can diminish over time, and so they can be administered as combination, rotation or sequential regimens . As a result, some participants discussed the possibility of obtaining alternative psoriasis medications, rather than discussing their perceptions of current medication necessity. As a result, scores could again be an inaccurate representation of medication necessity beliefs.
“I’m uncertain about that, and the reason for that is because you never know what medications might be around the corner which might be able to help me.” (P11, specific necessity Q4 ‘My health in the future will depend on my psoriasis medications’, item response ‘uncertain’, score 3/5)
Specific concerns domain
Of the five specific concern questions, one question (‘Having to take my psoriasis medications worries me’) did not generate problems relating to item content (Code 2) and one question (‘I sometimes worry about the long-term effects of my psoriasis medications’) did not generate problems relating to misinterpretation (Code 3). The analysis produced six themes for the specific concern domain (Table 5).
Theme 5: Terminology
Psoriasis therapies may conflict with patients’ understanding of the causes of their psoriasis; indeed, misunderstanding regarding the causation of psoriasis has been reported, including the belief that allergies  and uncontrollable factors (e.g. chance, back luck, poor medical care in the past, ageing)  are possible causal factors. In order to understand patient’s perceptions of their medication, assessing whether people understand why they are prescribed a particular therapy and how these medications work is necessary. Although item eight of the BMQ (‘My psoriasis medications are a mystery to me’) attempts to assess perceived understanding, participants did not understand the term ‘mystery’.
“I don’t understand that [mystery]…I don’t know quite how to take that” (P17, specific concerns Q8 ‘My psoriasis medications are a mystery to me’, item response ‘uncertain’, score 3/5)
Theme 6: Medication outcomes
Participants expressed the view that some terms used in the specific concern statements were too broad; participants differentiated between short- and long-term medication side-effects, current and future medication disruptions to daily life, and between physical and psychological medication dependency. As it currently stands, the BMQ does not differentiate between these different outcomes.
“No I never worried about the long-term effects. It was the short-term effects which bothered me. The fact that it caused me irritation.” (P9, specific concerns Q7 ‘I sometimes worry about the long-term effects of my psoriasis medications’, item response ‘strongly disagree’, score 1/5)
“I get a bit iffy if I realise that I’ve not got another one of everything in the house. I once left my wash bag behind and it had everything in it… my shampoo, my scalp solution, my creams…two whole days without anything. So it is like being dependent, but more mentally dependent on it” (P15, specific concerns Q10 ‘I sometimes worry about becoming too dependent on my psoriasis medications’, item response ‘strongly agree’, score 5/5)
Theme 7: Overly restrictive
A number of participants who were managed by their GP believed that access to psoriasis medications was overly restrictive. Existing BMQ items did not assess these beliefs and thus the inclusion of the condition-specific item (‘Doctors use too few psoriasis therapies’) was a useful addition to the BMQ.
“Oh yes, strongly agree [that doctors use too few treatments]. From my own experience from a number of G.P’s, I have found that they don’t know what treatments are available and they seem extraordinarily reluctant to use any, even if they are aware of them actually” [P4, over-restrictive belief Q19 ‘Doctors use too few psoriasis therapies’, item response ‘strongly agree’, score 5/5]
“Yes I do [agree that doctors use too few treatments]. I mean, they don’t even look into…even with all the things [therapies] coming out, they cannot be bothered to give you something else to try.” [P10, over-restrictive belief Q19 ‘Doctors use too few psoriasis therapies’, item response ‘agree’, score 4/5]
Theme 8: Failure to reflect the degree of concerns
A number of participants had stopped using their medication because they were so worried about them. However participant’s medications concerns were not identified by the BMQ items, as they felt the statement no longer applied (that is, “I no longer have concerns because I have stopped medication”). This resulted in the underestimation of medication concerns. Those with very high levels of concern could give low scores, with these scores incorrectly indicating that they did not have concerns about the medication.
“You know, I could use it every day for 2 months, but I don’t. The principle reason, other than it being a pain, is the long-term effects and skin thinning…” (P6, specific concerns Q9 ‘My psoriasis medications disrupt my life’, item response ‘strongly disagree’, score 1/5)
Theme 9: Illness vs. medications
When discussing medication concerns, some participants discussed their psoriasis rather than their psoriasis therapies, resulting in scores being an inaccurate representation of their concern beliefs.
“I suppose they do really because when it gets bad, I find it hard to not pick at it and scratch it. And there are bits of skin all over the place.” (P9, specific concerns Q9 ‘My psoriasis medications disrupt my life’, item response ‘agree’, score 4/5)
Theme 10: Uncertainty about prescribed medication
Although expressing worry about potential side-effects, some participants chose the ‘uncertain’ response option when answering concern items to reflect their own uncertainty about their medication and how these medications worked. This underestimated their medication concern beliefs.
“…I would probably say uncertain at the moment…what makes me feel uncertain about it is, you know, what other side-effects it could pose…could it make my psoriasis worse if I ever stop taking it…I do worry whether if I ever stopped the medication, could something trigger it off to come back much, much worse than it was before. So that’s a worry.” [P3, specific concerns Q6 ‘Having to take my psoriasis medications worries me’, item response ‘uncertain, score 3/5].
General overuse and harmfulness domains
The analysis produced one theme for the general concern domains, relating to item misinterpretation.
Theme 11: Medication-specific
Only one item in the general overuse and harmfulness scales did not generate any problems (‘If doctors had more time with patients they would prescribe fewer medicines’). Participants found items in these scales difficult to answer, as they thought their answer depended on further information about the medication that was not specified in the question, such as type of medication and how it was to be used.
“I’m going to say uncertain about that and again because it really depends on what type of medicine you are talking about and what you are using it for.” [P4, general concerns Q17 ‘Most medicines do more harm than good’, item response ‘uncertain’, score 3/5]
This qualitative study examined the extent to which the BMQ is suitable for assessing condition-specific medication beliefs, using psoriasis as a suitable exemplar of a complex condition characterised by relapsing-remitting symptoms and considerable medication challenges. Psoriasis was a useful condition to choose as its treatment includes a range of therapeutic approaches including different mechanisms. Its treatment pathway shares a great deal with other inflammatory conditions such as rheumatoid arthritis, inflammatory bowel disease as well as other long-term dermatological conditions. This work has important implications for the use of the BMQ in research and clinical settings.
Personal model of psoriasis and medication
Individuals’ perceptions of their psoriasis and medication influenced the extent to which the BMQ items were able to capture the aspects of the constructs they were designed to measure. Consistent with previous research [28, 29], psoriasis was viewed as a condition that was separate from perceptions of illness and disease, with a wide impact on functioning and complex medication outcomes. Due to the mismatch between the terminology used in the scale and individuals perceptions of psoriasis, the existing BMQ items led to scores that underestimated levels of medication necessity beliefs. Furthermore, the existing BMQ items were too broad to capture the complexity of participants’ perceptions of psoriasis management and medication outcomes, resulting in scores being an inaccurate representation of medication necessity beliefs.
Many of the misinterpretation problems identified in this study are parallel to those reported in other LTCs with different psychometric tools [33–36], with participants experiencing difficulty in generating an answer or answering different questions from what was asked. However a crucial key discovery was that the levels of medication concerns held by participants were significantly underestimated when assessed using the BMQ. Although some participants had stopped taking their prescribed psoriasis therapy because of their concerns about its usage, they believed the concern statements no longer applied because they were no longer using the medication.
Some BMQ items did not generate any problems with item content and/or misinterpretation, whilst others produced multiple problems. It was not the aim at this stage to provide a quantitative assessment of the number of problems generated for each individual item, but to identify general and condition-specific difficulties experienced by individuals when completing the BMQ. Indeed, it is clear that many of the problems were applicable to all items within each BMQ domain.
Medication adherence and supporting shared decision-making
The introduction of the Necessity-Concerns Framework by Horne and colleagues has changed our understanding of the role of medication beliefs in medication adherence. However there are differences in effect sizes in the association between medication beliefs and adherence, with some studies reporting no association [13, 14]. Whilst the BMQ has been a major contribution to the assessment of medication beliefs, this study has identified limitations of its use in complex LTCs. There is increasing recognition that we need to increase the specificity of measurement tools for the condition, for example, the authors of the tool most commonly used to assess illness beliefs, the Illness Perception Questionnaire-Revised , encourage the adaptation of the scale to different condition- or disease contexts. This approach can only help improve the validity of the core tools needed to assess predictors of adherence behaviours. Future work should examine the suitability of the BMQ in other chronic illness populations, as many of the problems identified in this study are applicable to other illness groups.
Many patients perceive healthcare professionals, especially GP’s, as lacking expertise, empathy and understanding in managing psoriasis, with some patients with poorly controlled psoriasis finding it difficult to obtain a specialist dermatology referral from their GP and some withdrawing from healthcare professional support [28, 29]. In addition, there is evidence to suggest that a large proportion of people with psoriasis believe that their condition is not treated sufficiently aggressively . This study has taken this further by demonstrating that participants who were being managed by their GP expressed strong beliefs that access to psoriasis medications is overly restrictive. An important area for future investigation is to assess the relationship between these illness-specific beliefs with medication adherence; for individuals who are being managed in primary care with topical therapies, individuals may underuse their topical medication in order to be referred to specialist care for systemic therapies. Alternatively, individuals may overuse their topical medication in an attempt to manage uncertain topical medication efficacy and gain control over the problematic control of symptoms. A belief that medications are overused is a common concern  and captured in the BMQ (General-overuse subscale). The addition of a subscale representing beliefs in the overly restrictive access to medication is required if researchers and clinicians are to be able to identify the full range of beliefs that influence medicines adherence.
In the UK NICE Medicines Adherence Guidelines , there is strong emphasis on the need to explore patients’ perspectives of medicines, to encourage patients to discuss any doubts or concerns they have about their medication and whether they believe they need them, in order to help ensure that people actively participate in decision-making and to support optimal self-management. Patients do not openly disclose their beliefs to clinicians , through fear of being labelled a ‘bad patient’, undeserving, and through fear of potential negative consequences (e.g. being taken off their treatment). Self-report tools may provide a valuable aid for clinicians in helping to elicit patients’ perceptions of their medication. We have demonstrated the challenges of assessing medication beliefs in a common and complex LTC, including the need to ensure that tool items are able to represent condition-specific beliefs and are clear to the individual in order to prevent item misinterpretation.
Strengths and limitations
We acknowledge that the total number of participants was small, with the majority recruited through support groups, and thus the findings may only be generalisable to this group. However recruitment from non-clinical settings resulted in a diverse sample ranging in disease and treatment history, including those who have disengaged from conventional health services. The nature of recruitment precludes assessment of the reasons given for non-participation. Although participants were not involved in the design of this study, all participants were fully briefed on its aims, interpretation and implications. Due to the nature of the study, participants did not check the transcripts. This is because participants may have requested to change their ‘real time’ response if, for example, they initially misinterpreted the items. Asking participants using combination therapy to complete the BMQ twice may have increased the cognitive complexity of the task. Although we acknowledge this limitation, it realistically reflects the inherent challenges of measuring medication beliefs in individuals managing complex LTCs and polypharmacy. Our results are broadly consistent with other think-aloud studies using different psychometric tools and clinical populations [33–36], with the sample size similar to other think-aloud studies [34, 36]. Although the think-aloud method has provided a valuable technique for revealing the challenges of assessing complex medication beliefs, future studies should develop this tool using additional psychometric evaluations.
This is the first study to explore the complexity of assessing medication beliefs in ‘real time’. The Necessity-Concerns Framework continues to have a pivotal role in furthering our understanding of medication adherence, however this study has identified problems with the items intended to measure is central constructs. We recommend that the BMQ is adapted by researchers for disease or medication specific use, perhaps by using real-time assessments of participants’ responses. The current study has emphasised the importance of adapting the BMQ to represent condition-specific medication beliefs, including focusing on the terminology used to describe the condition under investigation, considering the complexity of illness outcomes, and the need to identify additional condition-specific medication beliefs, such as beliefs in overly restrictive access to medications. It is also necessary to ensure that the statements are unambiguous to participants in order to prevent item misinterpretation, which may include terminology changes, providing clarifying statements, or changing item response choices. Suggested condition-specific and general changes are presented in Table 6.
Using psoriasis as a suitable exemplar of a complex condition associated with considerable medication challenges, this study has identified general and condition-specific difficulties experienced by individuals completing the BMQ in ‘real time’. Medication beliefs were underestimated, or not fully captured, by existing BMQ items. In order to improve our understanding of medication adherence and help support shared decision-making, the results from this study should be used as a basis in the development of condition-specific BMQ items, for use in both a research and clinical setting.
Beliefs about medicines questionnaire
National Institute for Health and Care Excellence
World Health Organisation
Horne R. Compliance, adherence, and concordance: implications for asthma treatment. Chest. 2006;130 Suppl 1:65S.
Haynes RB, Ackloo E, Sahota N, McDonald HP, Yao X. Interventions for enhancing medication adherence. Cochrane Database Syst Rev. 2008;2:CD000011.
World Health Organisation. Adherence to long-term therapies: evidence for action. Geneva: WHO; 2003.
DiMatteo MR, Giordani PJ, Lepper HS, Croghan TW. Patient adherence and medical treatment outcomes: a meta-analysis. Med Care. 2002;40(9):794–811.
Simpson SH, Eurich DT, Majumdar SR, Padwal RS, Tsuyuki RT, Varney J, et al. A meta-analysis of the association between adherence to drug therapy and mortality. BMJ. 2006;333:15.
Dragomir A, Côté R, Roy L, Blais L, Lalonde L, Bérard A, et al. Impact of adherence to antihypertensive agents on clinical outcomes and hospitalization costs. Med Care. 2010;48(5):418–25.
National Institute for Health and Clinical Excellence. Medicines adherence: involving patients in decisions about prescribed medicines and supporting adherence (CG76). London: NICE; 2009.
Elliott RA, Barber N, Clifford S, Horne R, Hartley E. The cost effectiveness of a telephone-based pharmacy advisory service to improve adherence to newly prescribed medicines. Pharm World Sci. 2008;30(1):17–23.
Phillips LA, Leventhal H, Leventhal EA. Physicians’ communication of the common-sense self-regulation model results in greater reported adherence than physicians’ use of interpersonal skills. Br J Health Psychol. 2012;17(2):244–57.
Horne R. Representations of medication and treatment: advances in theory and measurement. In: Weinman J, Petrie K, editors. Illness representations: theoretical foundations. London: Harwood Publishers; 1997. p. 155–88.
Horne R, Weinman J. Patients’ beliefs about prescribed medicines and their role in adherence to treatment in chronic physical illness. J Psychosom Res. 1999;47(6):555–67.
Horne R, Weinman J, Hankins M. The beliefs about medicines questionnaire: the development and evaluation of a new method for assessing the cognitive representation of medication. Psychol Health. 1999;14(1):1–24.
Horne R, Chapman SC, Parham R, Freemantle N, Forbes A, Cooper V. Understanding patients’ adherence-related beliefs about medicines prescribed for long-term conditions: a meta-analytic review of the necessity-concerns framework. PLoS One. 2013;8(12):e80633.
Foot H, La Caze A, Gujral G, Cottrell N. The necessity–concerns framework predicts adherence to medication in multiple illness conditions: A meta-analysis. Patient Educ Couns. 2016;99(5):706–17.
Nieuwlaat R, Wilczynski N, Navarro T, Hobson N, Jeffery R, Keepanasseril A, et al. Interventions for enhancing medication adherence. Cochrane Database Syst Rev. 2014;11:CD000011.
Griffiths CEM, Barker JN. Pathogenesis and clinical features of psoriasis. Lancet. 2007;370(9583):263–71.
Parisi R, Symmons DPM, Griffiths CEM, Ashcroft DM. Global epidemiology of psoriasis: a systematic review of incidence and prevalence. J Invest Dermatol. 2013;133(2):377–85.
Nevitt G, Hutchinson P. Psoriasis in the community: prevalence, severity and patients’ beliefs and attitudes towards the disease. Br J Dermatol. 1996;135(4):533–7.
Baker CS, Foley PA, Braue A. Psoriasis uncovered–measuring burden of disease impact in a survey of Australians with psoriasis. Australas J Dermatol. 2013;54 Suppl 1:1–6.
Kurd SK, Troxel AB, Crits-Christoph P, Gelfand JM. The risk of depression, anxiety, and suicidality in patients with psoriasis: a population-based cohort study. Arch Dermatol. 2010;146(8):891–5.
Thorneloe RJ, Bundy C, Griffiths CE, Ashcoft DM, Cordingley L. Adherence to medication in patients with psoriasis: a systematic literature review. Br J Dermatol. 2013;168(1):20–31.
Thorneloe RJ, Bundy C, Griffiths CEM, Ashcroft DM, Cordingley L. Non-adherence to psoriasis medications as an outcome of limited coping resources and conflicting goals: findings from a qualitative interview study with people with psoriasis. Br J Dermatol. 2016. Accepted Author Manuscript. doi:10.1111/bjd.15086
National Institute for Health and Clinical Excellence. Psoriasis: the assessment and management of psoriasis. (CG153). London: NICE; 2012.
Dubertret L, Mrowietz U, Ranki A, Van De Kerkhof PCM, Chimenti S, Lotti T, et al. European patient perspectives on the impact of psoriasis: the EUROPSO patient membership survey. Br J Dermatol. 2006;155(4):729–36.
Stern RS, Nijsten T, Feldman SR, Margolis DJ, Rolstad T. Psoriasis is common, carries a substantial burden even when not extensive, and is associated with widespread treatment dissatisfaction. J Investig Dermatol Symp Proc. 2004;9(2):136–9.
Krueger G, Koo J, Lebwohl M, Menter A, Stern RS, Rolstad T. The impact of psoriasis on quality of life: results of a 1998 national psoriasis foundation patient-membership survey. Arch Dermatol. 2001;137(3):280–4.
Nijsten T, Margolis DJ, Feldman SR, Rolstad T, Stern RS. Traditional systemic treatments have not fully met the needs of psoriasis patients: results from a national survey. J Am Acad Dermatol. 2005;52(3):434–44.
Nelson PA, Barker Z, Griffiths CE, Cordingley L, Chew-Graham CA. ‘On the surface’: a qualitative study of GPs’ and patients’ perspectives on psoriasis. BMC Fam Pract. 2013;14(1):158.
Nelson PA, Chew‐Graham CA, Griffiths CEM, Cordingley L. Recognition of need in health care consultations: a qualitative study of people with psoriasis. Br J Dermatol. 2013;168(2):354–61.
Ericsson KA, Simon HA. Protocol analysis: verbal reports as data. Cambridge: Bradford Books/MIT Press; 1993.
Green C, Gilhooly K. Protocol analysis: practical implementation. In: Richardson JTE, editor. Handbook of qualitative research methods for psychology and the social sciences. Leicester: BPS Books; 1996. p. 55–74.
Willis GB. Cognitive interviewing: a tool for improving questionnaire design. CA: Sage Thousand Oaks; 2005.
Darker CD, French DP. What sense do people make of a theory of planned behaviour questionnaire? a think-aloud study. J Health Psychol. 2009;14(7):861–71.
French DP, Cooke R, Mclean N, Williams M, Sutton S. What do people think about when they answer theory of planned behaviour questionnaires? a ‘think aloud’ study. J Health Psychol. 2007;12(4):672–87.
Kaklamanou D, Armitage CJ, Jones CR. A further look into compensatory health beliefs: a think aloud study. Br J Health Psychol. 2013;18(1):139–54.
Van Oort L, Schröder C, French D. What do people think about when they answer the brief illness perception questionnaire? a ‘think-aloud’ study. Br J Health Psychol. 2011;16(2):231–45.
Breakwell GM. Content analysis. In: Breakwell GM, Jonathan AS, Wright DB, editors. Research methods in psychology. 4th ed. London: SAGE Publications Ltd.; 2012. p. 511–530.
Lebwohl M. A clinician’s paradigm in the treatment of psoriasis. J Am Acad Dermatol. 2005;53(1):S59–69.
O’Leary CJ, Creamer D, Higgins E, Weinman J. Perceived stress, stress attributions and psychological distress in psoriasis. J Psychosom Res. 2004;57(5):465–71.
Moss-Morris R, Weinman J, Petrie K, Horne R, Cameron L, Buick D. The revised illness perception questionnaire (IPQ-R). Psychol Health. 2002;17(1):1–16.
Britten N. Patients’ ideas about medicines: a qualitative study in a general practice population. Br J Gen Pract. 1994;44(387):465–8.
Pound P, Britten N, Morgan M, Yardley L, Pope C, Daker-White G, et al. Resisting medicines: a synthesis of qualitative studies of medicine taking. Soc Sci Med. 2005;61(1):133–55.
We are grateful to Dr Pauline Nelson for her assistance in recruitment, and all individuals with psoriasis who took part in this study.
This study was undertaken as part of a studentship jointly funded by the Medical Research Council and the Psoriasis Association of Great Britain and Ireland. All decisions concerning data collection, analysis, interpretation and publication were made independently of the funders.
Availability of data and materials
The data cannot be deposited online due to ethical and legal restrictions related to confidentiality. Study participants have not been informed about, or approved data sharing, when data were collected in 2011-2012.
RT, D.A., C.G. and LC designed the study. RT led the project and collected the data. RT conducted the analysis, with secondary validation of the analysis undertaken by LC. RT and LC analysed and interpreted the data, and all authors engaged in ongoing discussion to achieve consensus on data coding. RT drafted the manuscript; all authors revised the manuscript and read and approved the final version.
Rachael Thorneloe, Christopher Griffiths, Darren Ashcroft and Lis Cordingley declare that they have no competing interests.
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Ethics approval and consent to participate
The University of Manchester research ethics committee in the North West of England granted ethical approval (reference 11059) and complies with the ethical principles stated in the Helsinki declaration. Informed consent was obtained from all participants prior to data collection.
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Thorneloe, R.J., Griffiths, C.E., Ashcroft, D.M. et al. The challenges of assessing patients' medication beliefs: a qualitative study. BMC Health Serv Res 17, 119 (2017). https://doi.org/10.1186/s12913-017-2020-y
- Beliefs about Medicines Questionnaire
- Shared decision-making
- Necessity-Concerns Framework
- Cognitive Interviewing