Prescribing and deprescribing in older people with life-limiting illnesses receiving hospice care at the end of life: A longitudinal, retrospective cohort study.

BACKGROUND: Although prescribing and deprescribing practices in older people have been the subject of much research generally, there are limited data in older people at the end of life. This highlights the need for research to determine prescribing and deprescribing patterns, as a first step to facilitate guideline development for medicines optimisation in this vulnerable population. AIMS: To examine prescribing and deprescribing patterns in older people at the end of life and to determine the prevalence of potentially inappropriate medication use. DESIGN: A longitudinal, retrospective cohort study where medical records of eligible participants were reviewed, and data extracted. Medication appropriateness was assessed using two sets of consensus-based criteria; the STOPPFrail criteria and criteria developed by Morin et al. SETTING/PARTICIPANTS: Decedents aged 65 years and older admitted continuously for at least 14 days before death to three inpatient hospice units across Northern Ireland, who died between 1st January and 31st December 2018, and who had a known diagnosis, known cause of death and prescription data. Unexpected/sudden deaths were excluded. RESULTS: Polypharmacy was reported to be continued until death in 96.2% of 106 decedents (mean age of 75.6 years). Most patients received at least one potentially inappropriate medication at the end of life according to the STOPPFrail and the criteria developed by Morin et al. (57.5 and 69.8% respectively). Limited prevalence of proactive deprescribing interventions was observed. CONCLUSIONS: In the absence of systematic rationalisation of drug treatments, a substantial proportion of older patients continued to receive potentially inappropriate medication until death.

Healthcare professionals' perspectives of deprescribing in older patients at the end of life in hospice care: a qualitative study using the Theoretical Domains Framework.

OBJECTIVES: This study aimed to investigate healthcare professionals' barriers to and enablers of deprescribing in older hospice patients at the end of life and prioritise relevant theoretical domains for behaviour change to be incorporated into future interventions to facilitate deprescribing. METHODS: Twenty doctors, nurses and pharmacists from four hospices in Northern Ireland participated in qualitative semistructured interviews using Theoretical Domains Framework (TDF)-based topic guides. Data were recorded, transcribed verbatim and analysed inductively using thematic analysis. Deprescribing determinants were mapped to the TDF enabling the prioritisation of domains for behaviour change. KEY FINDINGS: Four prioritised TDF domains represented key barriers to deprescribing implementation; lack of formal documentation of deprescribing outcomes (Behavioural regulation), challenges in communication with patients and families (Skills), lack of implementation of deprescribing tools in practice (Environmental context/resources) and patient and caregiver perceptions of medication (Social influences). Access to information was identified as a key enabler (Environmental context/resources). Perceived risks versus benefits of deprescribing were identified as a key barrier or enabler (Beliefs about consequences). CONCLUSIONS: This study highlights that further guidance on deprescribing in the context of end-of-life is required to address the growing problems of inappropriate prescribing, Guidance should consider factors such as the adoption of deprescribing tools, monitoring and documentation of deprescribing outcomes and how best to discuss prognostic uncertainty.

How do befriending interventions alleviate loneliness and social isolation among older people? A realist evaluation study.

BACKGROUND: Befriending is a popular way in which to intervene to combat loneliness and social isolation among older people. However, there is a need to improve our understanding about how these interventions work, for whom and in which contexts, to make the best use of the increasing investment in the provision and delivery of befriending services. METHODS: A realist evaluation was undertaken as it focuses on uncovering causal processes and interactions between mechanisms and contextual characteristics. Five case studies of befriending programmes in Northern Ireland were studied, reflecting variation in contextual variables, service user and provider characteristics. Data was collected via service documentation and semi-structured interviews (n = 46) with stakeholders involved in the delivery and receipt of befriending interventions. RESULTS: Eight initial programme theories were generated, which were 'tested' in the case study analysis to uncover context-mechanism-outcome relationships. Mechanisms identified included reciprocity, empathy, autonomy, and privacy which were triggered in different contexts to support the alleviation of loneliness and social isolation. Reciprocity was 'triggered' in contexts where service users and befrienders shared characteristics, the befriender was a volunteer and befriending took the form of physical companionship. Contexts characterised in terms of shared experiences between befriender and service user triggered empathy. Autonomy was triggered in contexts where befriending relationships were delivered long-term and did not focus on a pre-defined set of priorities. Privacy was triggered in contexts where service users had a cognitive/sensory impairment and received one-to-one delivery. CONCLUSION: This study improves understanding about how and why befriending interventions work. Findings indicate that services should be tailored to the needs of service users and take into consideration characteristics including mobility, impairments e.g. physical, sensory and/or cognitive, as well as the influence of service characteristics including payment for befrienders, fixed/long-term befriending relationship, one-to-one support and the impact of non-verbal communication via face-to-face delivery.

Improving preparedness prior to reconstructive breast surgery via inclusion of 3D images during pre-operative counselling: a qualitative analysis.

BACKGROUND: A proportion of women undergoing mastectomy for breast cancer choose to undergo breast reconstruction. Evidence suggests that women's preparedness for this surgery is low and that this may contribute to feelings of unmatched expectations and anxiety. There is substantial interest in decision-aids to remedy this. This study explores the incorporation of digitally rendered three-dimensional images into pre-operative counselling sessions as a means of enhancing patient preparedness. METHODS: A database of three-dimensional images was produced showing both optimal and sub-optimal aesthetic outcome, matched to participant on the basis of type of surgical reconstruction, body habitus, and skin tone. Women undergoing mastectomy for breast cancer followed by immediate reconstruction were targeted for inclusion. Participants interacted with image software during pre-operative counselling sessions by viewing, rotating, and zooming in/out to gain a more in-depth appreciation of post-operative aesthetic outcome. Semi-structured face-to-face interviews followed thereafter. Interviews were audio-recorded, transcribed, coded, and themes identified. RESULTS: Eight semi-structured interviews took place. The major emergent theme was 'increased preparedness' with subthemes including 'expectation management', 'software interaction', and 'enhanced realism'. There were no prohibitively negative emotions after interacting with images. Women reported gaining 'more of a perspective' and feeling 'more informed' after viewing images. They also valued the enhanced interactivity and better appreciation of reconstructed breast symmetry that viewing three-dimensional images offered when compared to viewing two-dimensional photographs. Finally, women also commented that three-dimensional images were more realistic. CONCLUSIONS: Results suggest that incorporation of three-dimensional images into pre-operative counselling sessions prior to breast reconstruction, is a fairly simple yet effective method of enhancing patient preparedness prior to surgery. Women particularly valued the ability to use the software to generate a more realistic idea of what to expect after their operation. Future work should focus on better understanding any quantifiable benefit from incorporating three-dimensional images routinely into pre-operative decision-making.

Validation of the Distress Thermometer in patients with advanced cancer receiving specialist palliative care in a hospice setting.

BACKGROUND: Ongoing assessment of psychological reaction to illness in palliative and end of life care settings is recommended, yet validated tools are not routinely used in clinical practice. The Distress Thermometer is a short screening tool developed for use in oncology, to detect individuals who would benefit from further psychological assessment. However the optimal cut-off to detect indicative psychological morbidity in patients with advanced cancer receiving specialist palliative care is unclear. AIM: To provide the first validation of the Distress Thermometer in an advanced cancer population receiving specialist palliative care in a UK hospice setting. DESIGN: Receiver Operating Characteristics analysis was used to compare the sensitivity and specificity of cut-offs indicative of psychological morbidity on the Distress Thermometer in comparison to the Hospital Anxiety and Depression Scale. SETTING/PARTICIPANTS: Data were derived from 202 patients with advanced cancer who were approached on admission to inpatient or day hospice care, with 139 patients providing complete data on both measures. RESULTS: The area under the curve was optimal using a Distress Thermometer cut-off score of ⩾6 for total distress and for anxiety, and a cut-off score of ⩾4 optimal when screening for depression. CONCLUSIONS: The Distress Thermometer is a valid, accurate screening tool to be used in advanced cancer but with caution in relation to the lack of specificity. With little variation between the area under the curve scores, arguably a Distress Thermometer cut-off score of ⩾5 is most appropriate in screening for all types of psychological morbidity if sensitivity is to be prioritised.

Loneliness and social isolation interventions for older adults: a scoping review of reviews.

BACKGROUND: Loneliness and social isolation are growing public health concerns in our ageing society. Whilst these experiences occur across the life span, 50% of individuals aged over 60 are at risk of social isolation and one-third will experience some degree of loneliness later in life. The aim of this scoping review was to describe the range of interventions to reduce loneliness and social isolation among older adults that have been evaluated; in terms of intervention conceptualisation, categorisation, and components. METHODS: Three electronic databases (CINAHL, Embase and Medline) were systematically searched for relevant published reviews of interventions for loneliness and social isolation. Inclusion criteria were: review of any type, published in English, a target population of older people and reported data on the categorisation of loneliness and/or social isolation interventions. Data extracted included: categories of interventions and the reasoning underpinning this categorisation. The methodology framework proposed by Arskey and O'Malley and further developed by Levac, et al. was used to guide the scoping review process. RESULTS: A total of 33 reviews met the inclusion criteria, evaluating a range of interventions targeted at older people residing in the community or institutionalised settings. Authors of reviews included in this paper often used the same terms to categorise different intervention components and many did not provide a clear definition of these terms. There were inconsistent meanings attributed to intervention characteristics. Overall, interventions were commonly categorised on the basis of: 1) group or one-to-one delivery mode, 2) the goal of the intervention, and 3) the intervention type. Several authors replicated the categorisation system used in previous reviews. CONCLUSION: Many interventions have been developed to combat loneliness and social isolation among older people. The individuality of the experience of loneliness and isolation may cause difficulty in the delivery of standardised interventions. There is no one-size-fits-all approach to addressing loneliness or social isolation, and hence the need to tailor interventions to suit the needs of individuals, specific groups or the degree of loneliness experienced. Therefore, future research should be aimed at discerning what intervention works for whom, in what particular context and how.

Examining constipation assessment and management of patients with advanced cancer receiving specialist palliative care: a multi-site retrospective case note review of clinical practice.

BACKGROUND: Constipation is a common symptom for patients receiving palliative care. Whilst international clinical guidelines are available on the clinical management of constipation for people with advanced cancer receiving specialist palliative care (SPC), the extent to which the guidelines are implemented in practice is unclear. This study aimed to examine clinical practices for the assessment and management of constipation for patients with advanced cancer within inpatient SPC settings. METHODS: A multi-site retrospective case-note review was conducted, consisting of 150 patient case-notes from three inpatient SPC units across the United Kingdom between August 2016 and May 2017. The variables selected for review were determined by the recommendations within the clinical guidelines. Descriptive statistics, cross tabulation, chi square, and bivariate correlations were used to examine clinical practices compared to policy guidelines for the assessment and management of constipation. Reporting was structured by the STROBE checklist for observational research (Additional File 2). RESULTS: A comprehensive assessment, including a full history and performing a physical exam, was recorded for 109 patients (73%), however, no standardised documentation was utilised. Assessment was nurse led, with variable involvement across sites of other members of the multidisciplinary team (MDT). Education on prevention was documented in 30 (20%) case-notes, and 53% recorded evidence of non-pharmacological intervention. Age, gender, and reason for admission did not impact on the likelihood of receiving a comprehensive assessment, education, or non-pharmacological intervention, however, significant differences were evident between sites. Pharmacological management was well developed and aligned to the guidelines however, 33% of patient case-notes recorded no information on the titration of laxatives. Twelve percent of patients experienced partial or complete bowel obstruction, and management strategies were variable. CONCLUSIONS: Constipation management is driven by a pharmacological approach, with little evidence of the implementation of preventative and non-pharmacological strategies. The nurse plays a key coordinating role in assessment; however, involvement and roles of the wider MDT varies. Accurate recording of care is essential when examining clinical practice and identifying areas for improvement. Further education is needed to equip HCPs with the knowledge and skills to ensure consistency in assessment and implementation of appropriate non-pharmacological/ preventative strategies.

Assessment and management of constipation for patients receiving palliative care in specialist palliative care settings: A systematic review of the literature.

BACKGROUND: Constipation is an important issue for patients receiving palliative care within specialist palliative care settings. Questions and ambiguity, however, persist about international best practice and management. AIM: To synthesise the current evidence base on the assessment and management of constipation for palliative care patients within a specialist palliative care setting. DESIGN: This is a systematic review. DATA SOURCES: MEDLINE, Embase, CINAHL, Scopus and Cochrane databases were systematically searched in April 2017 for empirical studies, written in English, on the assessment and management of constipation in specialist palliative care settings, published between 2007 and 2017. Two researchers independently reviewed and critically appraised all studies, conducted data extraction, and undertook a thematic analysis. RESULTS: In total, 13 studies were included in the review comprising randomised trials ( n = 3), observational ( n = 4) and descriptive studies ( n = 6). Most research was conducted in specialist palliative care units, targeting either healthcare professionals or patients. The analysis highlighted a lack of standard definition of constipation, raising questions on the existence and comparability of baseline prevalence figures, the physical and psychological impact on patients, resource impact on staff and service, the subjective and objective methods of assessing constipation, and key aspects of constipation management, including a lack of focus on non-pharmacological management in this setting. CONCLUSION: The results of this review are being used to inform the development of an educational intervention targeting healthcare professionals. Gaps in the evidence base include lack of consistent definition of constipation, constipation prevention, non-pharmacological management, and the consideration of the management of constipation for the dying patient.

Use of parecoxib by continuous subcutaneous infusion for cancer pain in a hospice population.

OBJECTIVES: To characterise the use of the parenteral non-steroidal anti-inflammatory drug parecoxib when given by continuous subcutaneous infusion (CSCI) in a hospice population. Clinical experience suggests parecoxib CSCI may be of benefit in this population, but empirical evidence in relation to its safety and efficacy is lacking. METHODS: Retrospective chart review of patients with a cancer diagnosis receiving parecoxib CSCI from 2008 to 2013 at the Marie Curie Hospice, Belfast. Data were collected on treatment regime, tolerability and, in patients receiving at least 7 days treatment, baseline opioid dose and changes in pain scores or opioid rescue medication requirements. RESULTS: Parecoxib CSCI was initiated in 80 patients with a mean administration of 17.9 days (median 11, range 1-94). When used for a period of 7 days, there was a statistically significant reduction in pain scores (p=0.002) and in the number of rescue opioid doses required (p=0.001), but no statistically significant opioid-sparing effect (p=0.222). It was generally well tolerated, although gastrointestinal, renal adverse effects and local site irritation were reported. CONCLUSIONS: Parecoxib may have a valuable place in the management of cancer pain, especially towards the end of life when oral administration is no longer possible and CSCI administration is relied on. Further studies into the efficacy and tolerability of parecoxib CSCI are merited.

A Systematic Review of the Patient- and Carer-Related Factors Affecting the Experience of Pain for Advanced Cancer Patients Cared for at Home.

CONTEXT: Effective pain management is a priority in the palliative care of advanced cancer patients. A body of research is emerging examining the factors that influence the management and experience of pain for such individuals. Identifying such factors should allow for the development of targeted interventions to improve pain management in the home while ultimately reducing unnecessary suffering for the patient. OBJECTIVES: The objective of this study was to identify relevant patient- and carer-related factors which have an effect on the pain experienced by advanced cancer patients cared for at home. METHOD: This is a systematic review following the Preferred Reporting Items for Systematic Reviews and Meta Analyses (PRISMA) statement guidelines. Studies were retrieved from the CINAHL, MEDLINE, and Web of Science and assessed independently by two reviewers with discrepancies assessed by a third before quality assessment and data extraction. A narrative synthesis was produced. RESULTS: Our search strategy produced 720 hits, of which 10 studies were retained for the final analysis. The factors identified included carer knowledge of cancer pain management, carer burden, carer and patient distress, pain rating disparity, patient well-being, patient depression, patient affective experience, patient body image, and satisfaction with palliative/medical care. All factors identified are supported by only some evidence with many having only been explored in single studies. CONCLUSIONS: There is a lack of quantitative research in the area of factors influencing the experience of pain for advanced cancer patients cared for at home. Such findings would be useful in developing theories of change that would underpin interventions aimed at improving pain outcomes for this population.

Psychological factors associated with diabetes self-management among adolescents with Type 1 diabetes: A systematic review.

This review aims to synthesise the literature examining the psychosocial variables related to self-management (insulin adherence, non-adherence and administration, blood sugar monitoring, dietary behaviour, exercise behaviour) in adolescents with type 1 diabetes. A systematic search of three electronic databases was carried out and, after the application of eligibility criteria, 21 articles were assessed for quality prior to data extraction. Numerous psychological factors were found to be associated with self-management; however, correlations were typically small to moderate. The strongest associations were found between social anxiety and diet (among males); greater intrinsic motivation, conscientiousness and diet; and extraversion and exercise.

Identifying models of delivery, care domains and quality indicators relevant to palliative day services: a scoping review protocol.

BACKGROUND: With an ageing population and increasing numbers of people with life-limiting illness, there is a growing demand for palliative day services. There is a need to measure and demonstrate the quality of these services, but there is currently little agreement on which aspects of care should be used to do this. The aim of the scoping review will be to map the extent, range and nature of the evidence around models of delivery, care domains and existing quality indicators used to evaluate palliative day services. METHODS: Electronic databases (MEDLINE, EMBASE, CINAHL, PsycINFO, Cochrane Central Register of Controlled Trials) will be searched for evidence using consensus development methods; randomised or quasi-randomised controlled trials; mixed methods; and prospective, longitudinal or retrospective case-control studies to develop or test quality indicators for evaluating palliative care within non-residential settings, including day hospices and community or primary care settings. At least two researchers will independently conduct all searches, study selection and data abstraction procedures. Meta-analyses and statistical methods of synthesis are not planned as part of the review. Results will be reported using numerical counts, including number of indicators in each care domain and by using qualitative approach to describe important indicator characteristics. A conceptual model will also be developed to summarise the impact of different aspects of quality in a palliative day service context. Methodological quality relating to indicator development will be assessed using the Appraisal of Indicators through Research and Evaluation (AIRE) tool. Overall strength of evidence will be assessed using the Grading of Recommendations, Assessment, Development, and Evaluation (GRADE) system. Final decisions on quality assessment will be made via consensus between review authors. DISCUSSION: Identifying, developing and implementing evidence-based quality indicators is critical to the evaluation and continued improvement of palliative care. Review findings will be used to support clinicians and policymakers make decisions on which quality indicators are most appropriate for evaluating day services at the patient and service level, and to identify areas for further research.

Improving the wellbeing of staff who work in palliative care settings: A systematic review of psychosocial interventions.

BACKGROUND: Staff in palliative care settings perform emotionally demanding roles which may lead to psychological distress including stress and burnout. Therefore, interventions have been designed to address these occupational risks. AIM: To investigate quantitative studies exploring the effectiveness of psychosocial interventions that attempt to improve psychological wellbeing of palliative care staff. DESIGN: A systematic review was conducted according to methodological guidance from UK Centre for Reviews and Dissemination. DATA SOURCES: A search strategy was developed based on the initial scans of palliative care studies. Potentially eligible research articles were identified by searching the following databases: CINAHL, MEDLINE (Ovid), PsycINFO and Web of Science. Two reviewers independently screened studies against pre-set eligibility criteria. To assess quality, both researchers separately assessed the remaining studies using the Quality Assessment Tool for Quantitative Studies. RESULTS: A total of 1786 potentially eligible articles were identified - nine remained following screening and quality assessment. Study types included two randomised controlled trials, two non-randomised controlled trial designs, four one-group pre-post evaluations and one process evaluation. Studies took place in the United States and Canada (5), Europe (3) and Hong Kong (1). Interventions comprised a mixture of relaxation, education, support and cognitive training and targeted stress, fatigue, burnout, depression and satisfaction. The randomised controlled trial evaluations did not improve psychological wellbeing of palliative care staff. Only two of the quasi-experimental studies appeared to show improved staff wellbeing although these studies were methodologically weak. CONCLUSION: There is an urgent need to address the lack of intervention development work and high-quality research in this area.

Change in psychological distress in longer-term oesophageal cancer carers: are clusters of illness perception change a useful determinant?

OBJECTIVE: This study provides a longitudinal assessment of distress in longer-term oesophageal cancer carers, while examining illness perception schema as a possible determinant of change in distress over time. METHODS: Oesophageal cancer carers (n = 171), 48 months post-diagnosis, were assessed at baseline and 12 months later with the Illness Perception Questionnaire-Revised, Cancer Coping Questionnaire, Hospital Anxiety and Depression Scale and Concerns About Recurrence Scale. RESULTS: Findings report deterioration from normal to probable anxiety in 35.7% of carers and probable depression in 28.7% carers over time. Fear of recurrence remained stable. Changes in control, consequence and cause beliefs were identified as key determinants of a change in psychological morbidity. CONCLUSIONS: Illness beliefs appear to be valuable targets for psychological intervention to improve wellbeing among carers of people with oesophageal cancer. Copyright © 2015 John Wiley & Sons, Ltd.

Illness perceptions and coping in physical health conditions: A meta-analysis.

OBJECTIVE: There is a considerable body of research linking elements of Leventhal's Common Sense Model (CSM) to emotional well-being/distress outcomes among people with physical illness. The present study aims to consolidate this literature and examine the evidence for the role of coping strategies within this literature. METHODS: A systematic review was conducted where the outcomes of interest were: depression, anxiety and quality of life. A total of 1050 articles were identified and 31 articles were considered eligible to be included in the review. RESULTS: Across a range of illnesses, perceptions of consequences of the illness and emotional representations were consistently the illness perceptions with the strongest relationship with the outcomes. Coping variables tend to be stronger predictors of outcomes than the illness perception variables. The evidence for the mediating effect of coping was inconsistent. CONCLUSIONS: Illness perceptions and coping have an important role to play in the explanation of distress outcomes across a range of physical health conditions. However, some clarity about the theoretical position of coping in relation to illness perceptions, and further longitudinal work is needed if we are to apply this information to the design of interventions for the improvement of psychological health among people with physical health conditions.

Exploring public awareness and perceptions of palliative care: a qualitative study.

BACKGROUND: Research suggests that the public appear to be confused about the meaning of palliative care. Given the ageing population and associated increase in the number of patients requiring palliative care, it is vital to explore the public's understanding of this concept. Health-promoting palliative care seeks to translate hospice and palliative care ideals into broader public health practice. AIM: To explore public perceptions of palliative care and identify strategies to raise awareness. DESIGN: An exploratory qualitative approach. PARTICIPANTS: Semi-structured telephone interviews were undertaken (N = 50) with members of the public who volunteered to participate in the study. The interviews focused on knowledge and perceptions of palliative care, expectations of palliative care services and the identification of strategies to raise public awareness of palliative care. The interviews were audio recorded and content analysed. RESULTS: Most participants had a general knowledge of palliative care, largely influenced by their own personal experience. They identified that palliative care was about caring for people who were dying and maintaining comfort in the last days of life. Participant's expectations of services included the following: holistic support, symptom management, good communication and practical support to enable choice and carer support. Key aspects identified for promoting palliative care were the development of understanding and use of the term itself and targeted educational strategies. CONCLUSION: Experience of palliative care generates understanding in the general public who also have ideas for increasing knowledge and awareness. The findings can inform policymakers about strategies to raise public awareness of palliative care.

Illness perception clusters at diagnosis predict psychological distress among women with breast cancer at 6 months post diagnosis.

OBJECTIVE: This study aimed to examine the extent to which illness perceptions and coping strategies among women diagnosed with breast cancer explain psychological distress at diagnosis and at 6 months post diagnosis relative to demographic and illness-related variables. METHODS: Women were recruited to the study shortly after diagnosis. A total of 90 women completed study materials (Illness Perception Questionnaire-Revised, the Cancer Coping Questionnaire and the Hospital Anxiety and Depression Scale) at time 1. The same questionnaires were sent approximately 6 months later to those who had consented at time 1, and completed questionnaires were returned by 72 women. RESULTS: Cluster analysis was used to identify groups of respondents who reported a similar profile of illness perception scores. Regression analysis demonstrated that one of these clusters was more likely to experience psychological distress than the other both at diagnosis and at 6 months post diagnosis. Illness perception cluster membership and positive focus type coping were the most important and consistent predictors of lower psychological distress at diagnosis and at 6 months post diagnosis. CONCLUSIONS: Illness perceptions remained relatively stable over the study period, and therefore we are unable to clarify whether changes in illness cognitions are associated with a corresponding change in psychological symptoms. Future research should evaluate the impact on psychological distress of interventions specifically designed to modify illness cognitions among women with breast cancer.

Content validity of the illness perceptions questionnaire--revised among people with type 2 diabetes: a think-aloud study.

OBJECTIVES: to access the cognitions of adults with type 2 diabetes whilst completing items on the Illness Perceptions Questionnaire-Revised (IPQ-R). To determine whether these cognitions are congruent with the meaning of items and subscales as interpreted by researchers and clinicians using the IPQ-R and to identify the nature and extent of problems that individuals experience when completing the IPQ-R. DESIGN: participants (n = 36) were recruited from a primary care diabetes clinic and a hospital diabetes clinic. They were asked to complete the IPQ-R using a 'think-aloud' methodology. MAIN OUTCOME MEASURES: transcripts were analysed to identify instances where participants expressed problems with item completion, or where there was inconsistency between verbal and written responses. RESULTS: the most problematic subscales were those of 'personal control' and 'consequences'. CONCLUSION: generally, participants found the IPQ-R unproblematic. However, participants had problems with the concept of 'cure' and 'symptoms' in the context of type 2 diabetes, and with the negative phrasing used in some items. These findings have important implications for the interpretation of IPQ-R scores, particularly when the IPQ-R is used as the basis for individualised interventions among people with type 2 diabetes.