The challenges of assessing patients' medication beliefs: a qualitative study

Background 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. Methods 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. Results 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. Conclusions 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

Identifying the content and context of pain within paediatric rheumatology healthcare professional curricula in the UK: a summative content analysis.

From Europe PMC via Jisc Publications RouterHistory: ppub 2021-08-01, epub 2021-08-21Publication status: PublishedFunder: Versus Arthritis; Grant(s): 12794BackgroundThe curriculum for professionals working in paediatric rheumatology should include pain but it is unclear to what extent this currently occurs. The aim of this study was to identify pain-related curriculum content and the context in which pain is presented in educational and training documentation for healthcare professionals in this clinical speciality.MethodsCore curricula documents from UK based professional organisations were identified in partnership with healthcare professionals. Documents were analysed using a summative content analysis approach. Key pain terms were quantified and weighted frequencies were used to explore narrative pain themes. Latent content was interpreted qualitatively to explore the context within which pain terms were positioned.ResultsNine curriculum documents were identified and analysed from doctors, nurses, physiotherapists and occupational therapists specialising in paediatric rheumatology. Pain themes represented a mean percentage of 1.51% of text across all documents. Pain was rarely presented in the context of both inflammatory and non-inflammatory condition types despite being a common feature of each. Musculoskeletal pain was portrayed simply as a 'somatic' symptom, rather than as a complex phenomenon involving biological and psychosocial processes. Content around the assessment and management of pain was vague and inexplicit.ConclusionCurrent educational and training documentation in paediatric rheumatology do not include core pain topics. Curricula for these healthcare professionals would benefit from updates in contemporary pain theories and examples of in-context, evidence-based pain practices. This should be a priority starting point for optimising patient pain care in paediatric musculoskeletal healthcare

“That’s what makes me better”: Investigating children and adolescents’ experiences of pain communication with healthcare professionals in paediatric rheumatology

BackgroundPain communication should be an integral part of clinical consultations, particularly in paediatric rheumatology where children and adolescents frequently present with chronic musculoskeletal pain. To date, literature exploring the nature of and extent to which pain communication occurs has focused on healthcare professionals as respondents, yielding inconsistent and incomplete findings. The aim of this study was to explore children and adolescents’ experiences of pain communication in the context of paediatric rheumatology consultations. MethodsData were collected using semi-structured telephone interviews with children and adolescents recruited from three tertiary paediatric rheumatology centres in the UK. A framework analysis approach was used to explore the similarities and divergences in participant accounts. ResultsTwenty-six children and adolescents (aged 6-18 years, median=14, 58% female) participated. Diagnoses included: Juvenile Idiopathic Arthritis, Chronic Idiopathic Pain Syndromes, Ehlers Danlos Syndrome/Hypermobility. Four themes were identified: 1) Co-ordination of pain communication; 2) Barriers to pain communication; 3) Facilitators of pain communication; 4) Dissatisfaction with pain communication. These themes particularly encompassed the process of communication, disclosure of effective and ineffective approaches and the impact of communication. Participants expected questions about pain, felt cared about and found talking about pain natural. Challenges included augmenting the feeling of being different to peers and concerns about management plans changing as a result of pain conversations. ConclusionsChildren and adolescents recalled a range of effective and ineffective pain communication approaches. Our study informs recommendations which highlight how paediatric healthcare professionals can improve their communication about pain with children and adolescents in the future. <br/

Data protection, information governance and the potential erosion of ethnographic methods in health care?

From Wiley via Jisc Publications RouterHistory: received 2021-05-19, rev-recd 2021-10-27, accepted 2021-11-02, pub-electronic 2021-11-23Article version: VoRPublication status: PublishedFunder: Versus Arthritis; Grant(s): 22433, 20380Funder: National Institute of Health ResearchFunder: Applied Research CollaborationFunder: North East and North CumbriaAbstract: With the most recent developments to the European General Data Protection Regulations (GDPR) introduced in May 2018, the resulting legislation meant a new set of considerations for study approvers and health‐care researchers. Compared with previous legislation in the UK (The Data Protection Act, 1998), it introduced more extensive and directive principles, requiring anybody ‘processing’ personal data to specifically define how this data will be obtained, stored, used and destroyed. Importantly, it also emphasised the principle of accountability, which meant that data controllers and processors could no longer just state that they planned to adhere to lawful data protection principles, they also had to demonstrate compliance. New questions and concerns around accountability now appear to have increased levels of scrutiny in all areas of information governance (IG), especially with regards to processing confidential patient information. This article explores our experiences of gaining required ethical and regulatory approvals for an ethnographic study in a UK health‐care setting, the implications that the common law duty of confidentiality had for this research, and the ways in which IG challenges were overcome. The purpose of this article was to equip researchers embarking on similar projects to be able to navigate the potentially problematic and complex journey to approval

'On the surface': a qualitative study of GPs' and patients' perspectives on psoriasis

BACKGROUND: Psoriasis is a chronic, inflammatory skin disease affecting approximately 2% of the UK population and is currently incurable. It produces profound effects on psychological wellbeing and social functioning and has significant associated co-morbidities. The majority of patients with psoriasis are managed in primary care, however in-depth patient and GP perspectives about psoriasis management in this setting are absent from the literature. This article reports an in-depth study which compares and contrasts the perspectives of people with psoriasis and of GPs on the challenges of managing psoriasis in primary care. METHODS: In-depth, qualitative semi-structured interviews were conducted with a diverse sample of 29 people with psoriasis and 14 GPs. Interviews were coded using principles of Framework Analysis to enable a comparison of patient and practitioner perspectives on key issues and concepts arising from the data. RESULTS: Patients perceived GPs to be lacking in confidence in the assessment and management of psoriasis and both groups felt lacking in knowledge and understanding about the condition. While practitioners recognised that psoriasis has physical, emotional and social impact, they assumed patients had expertise in the condition and may not address these issues in consultations. This resulted in patient dissatisfaction and sub-optimal assessment of severity and impact of psoriasis by GPs. Patients and GPs recognised that psoriasis was not being managed as a complex long-term condition, however this appeared less problematic for GPs than for patients who desired a shared management with their GP incorporating appropriate monitoring and timely reviews. CONCLUSIONS: The research suggests that current routine practice for psoriasis management in primary care is mismatched with the expressed needs of patients. To address these needs, psoriasis must be recognised as a complex long-term condition involving exacting physical, psychological and social demands, co-morbidity and the development of new treatments.General practitioners need to improve both their knowledge and skills in the assessment and management of psoriasis. This in turn will facilitate management of the condition in partnership with patients. Commissioning multi-disciplinary services, which focus on long-term impacts on wellbeing and quality of life, might address current deficits in care

Beliefs About Pain in Pediatric Inflammatory and Noninflammatory Chronic Musculoskeletal Conditions: A Scoping Review

Objective: The Common Sense Self-Regulatory Model posits that beliefs about pain influence coping behaviors and subsequent physical and mental health outcomes in children/young people with chronic musculoskeletal conditions. It was unclear how and what beliefs had been investigated in this population, and whether there were similarities and differences in beliefs held about pain by those experiencing inflammatory versus noninflammatory musculoskeletal conditions. This scoping review addressed this gap. Methods: A systematic search was conducted using four databases (MEDLINE, PsycINFO, Embase, and CINAHL) in November 2021. Primary studies exploring key stakeholders' (including children, parents, and/or healthcare professionals) beliefs about pain underlying pediatric chronic musculoskeletal conditions were synthesized. Results: Eighteen articles were identified. Cross-sectional designs were predominantly used to explore beliefs (n = 6). The majority used questionnaires to assess beliefs (n = 12). Beliefs common across musculoskeletal conditions were that children/young people felt their pain was not understood by others, and pain affected their physical functioning. Differences included children/young people and parents thinking they had some ability to control pain, and causal beliefs relating to underlying disease activity. These pain beliefs were more likely to be held in relation to inflammatory diagnoses. In contrast, children/young people and parents were more likely to view pain as uncontrollable, with more uncertainty regarding underlying causes, relating to noninflammatory diagnoses. Conclusions: Methods used to explore pain beliefs were inconsistent. Studies identified similarities and differences which appear to be closely related to the underlying diagnosis. Findings justify further exploration to identify potentially modifiable targets to improve pain outcomes in this population.</p

Implementation of the PsoWell™ model for the management of people with complex psoriasis

The Psoriasis and Well-being (PsoWell)™ training programme, incorporating motivational interviewing, improves clinicians’ knowledge and skills to manage complex psoriasis, including behaviour change. The aims of this study were to deliver the PsoWell™ training programme to dermatology specialists, and to evaluate the acceptability and feasibility of implementing the PsoWell™ model across dermatology services. Framework analysis of 19 qualitative semi-structured interviews was performed, following delivery of nine, 1-day PsoWell™ training days involving 119 participants. Two themes were identified: “Perceptions and Priorities” and “Awareness”, sub-divided into: “Awareness Not Competence” and “Increasing Awareness”. The PsoWell™ model was found to be acceptable and feasible to implement across dermatology settings. Participants were more skilled and motivated to address psycho­logical issues, including behaviour change, but wanted further training to ensure competency. The trainees claimed that scepticism among some colleagues regarding whole-patient management might prevent uptake. Data show­ing the impact on health outcomes are needed and might overcome scepticism. Remote consultation could adopt the PsoWell™ approach

Suicide prevention in primary care: General practitioners' views on service availability

BackgroundPrimary care may be a key setting for suicide prevention. However, comparatively little is known about the services available in primary care for suicide prevention. The aims of the current study were to describe services available in general practices for the management of suicidal patients and to examine GPs views on these services. We carried out a questionnaire and interview study in the North West of England. We collected data on GPs views of suicide prevention generally as well as local mental health service provision.FindingsDuring the study period (2003-2005) we used the National Confidential Inquiry Suicide database to identify 286 general practitioners (GPs) who had registered patients who had died by suicide. Data were collected from GPs and practice managers in 167 practices. Responses suggested that there was greater availability of services and training for general mental health issues than for suicide prevention specifically. The three key themes which emerged from GP interviews were: barriers accessing primary or secondary mental health services; obstacles faced when referring a patient to mental health services; managing change within mental health care servicesConclusionsHealth professionals have an important role to play in preventing suicide. However, GPs expressed concerns about the quality of primary care mental health service provision and difficulties with access to secondary mental health services. Addressing these issues could facilitate future suicide prevention in primary care

Intentional and unintentional medication non-adherence in psoriasis: The role of patients’ medication beliefs and habit strength

Medication non-adherence is a missed opportunity for therapeutic benefit. We assessed “real-world” levels of self-reported non-adherence to conventional and biologic systemic therapies used for psoriasis and evaluated psychological and biomedical factors associated with non-adherence using multivariable analyses. Latent profile analysis was used to investigate whether patients can be categorized into groups with similar medication beliefs. Latent profile analysis categorizes individuals with similar profiles on a set of continuous variables into discrete groups represented by a categorical latent variable. Eight hundred and eleven patients enrolled in the British Association of Dermatologists Biologic Interventions Register were included. Six hundred and seventeen patients were using a self-administered systemic therapy; 22.4% were classified as “non-adherent” (12% intentionally and 10.9% unintentionally). Patients using an oral conventional systemic agent were more likely to be non-adherent compared to those using etanercept or adalimumab (29.2% vs. 16.4%; P ≤ 0.001). Latent profile analysis supported a three-group model; all groups held strong beliefs about their need for systemic therapy but differed in levels of medication concerns. Group 1 (26.4% of the sample) reported the strongest concerns, followed by Group 2 (61%), with Group 3 (12.6%) reporting the weakest concerns. Group 1 membership was associated with intentional non-adherence (odds ratio = 2.27, 95% confidence interval = 1.16−4.47) and weaker medication-taking routine or habit strength was associated with unintentional non-adherence (odds ratio = 0.92, 95% confidence interval = 0.89−0.96). Medication beliefs and habit strength are modifiable targets for strategies to improve adherence in psoriasis