A randomised controlled trial to assess the impact of a package comprising a patient-orientated, evidence-based self-help guidebook and patient-centred consultations on disease management and satisfaction in inflammatory bowel disease

Ap, Kennedy; Nelson, E Andrea; Reeves, David; Richardson, G; Roberts, Callie; Robinson, Andrew; Ae, Rogers; Sculpher, Mark; Thompson, David G.

doi:10.3310/hta7280

Cited by 60 publications

(55 citation statements)

References 120 publications

(178 reference statements)

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“…It is recommended that patients or their caregivers should be leading the timing of the consultations, so that they are held at a stage when the patient has poignant points to discuss. Observations in patients with inflammatory bowel disease suggest that such a patient-driven arrangement of consultations could result in a reduction in consultation frequency and also a reduction of costly 'no shows' [33]. Objective measures of disease progression or markers of vital complications such as falls will help in delivering a more individually tailored follow-up system, without the risk of losing patients who fail to report to their physician despite clear indications to do so.…”

Section: Discussionmentioning

confidence: 99%

Move for Change Part III: a European survey evaluating the impact of the EPDA Charter for People with Parkinson's Disease

Bloem

Stocchi

2014

Euro J of Neurology

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Background and purpose: Move for Change is an online pan-European patient survey based on the European Parkinson's Disease Association (EPDA) Charter for People with Parkinson's Disease (PD), which states that all PD patients have the right to: be referred to a doctor with a specialist interest in PD; receive an accurate diagnosis; have access to support services; receive continuous care; and take part in managing their illness. Methods: This part of the survey focuses on the final two elements of the Charter. It was administered online through the EPDA website and through affiliated patient associations' websites. A total of 1591 questionnaires were received and 1546 were analysed (97.2%).Results: Approximately half of the patients (53.0%) consulted a neurologist regularly (every 4-6 months). Consultations were usually arranged as part of a follow-up process (65.5%) and lasted for 15-30 min (63.2%), with 16.1% lasting <10 min and 17.9% lasting >30 min. Patients were largely satisfied with the attention they received (63.2%) but just 11.6% of patients were involved in treatment decisions, and 39.1% prepared a list of symptom changes for discussion. Two hundred caregivers also took part in the survey, and 71.4% felt included in the treatment plan by the doctor. Conclusions: These results highlight that PD disease-management is driven by the clinician; he/she arranges consultations and makes the majority of management decisions, rather than patients being included in the process. This survey can be used to raise awareness for PD patients, encouraging greater involvement in the management of PD.

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Section: Discussionmentioning

confidence: 99%

Move for Change Part III: a European survey evaluating the impact of the EPDA Charter for People with Parkinson's Disease

Bloem

Stocchi

2014

Euro J of Neurology

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“…The observed association between hypermobility and TMD signs does not have a direct implication in terms of treatment for patients with TMD because hypermobility is not a modifiable risk factor. Above and beyond the contribution to our understanding of TMD in general, the individual patient and healthcare professional both benefit from information on the causality of the patientÕs disease, even when no causal treatment is possible (38). Patients and healthcare professionals alike want to know what caused the condition.…”

Section: Discussionmentioning

confidence: 99%

Association between generalized joint hypermobility and signs and diagnoses of temporomandibular disorders

Hirsch

John

Stang

2008

European J Oral Sciences

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The aim of this study was to analyze whether generalized joint hypermobility (GJH) is a risk factor for temporomandibular disorders (TMD). We examined 895 subjects (20-60 yr of age) in a population-based cross-sectional sample in Germany for GJH according to the Beighton classification and for TMD according to the Research Diagnostic Criteria for TMD (RDC/TMD). After controlling for the effects of age, gender, and general joint diseases using multiple logistic regression analyses, hypermobile subjects (with four or more hypermobile joints on the 0-9 scale) had a higher risk for reproducible reciprocal clicking as an indicator for disk displacement with reduction (Odds Ratio (OR) = 1.68) compared with those subjects without hypermobile joints. Concurrently, subjects with four or more hypermobile joints had a lower risk for limited mouth opening (< 35 mm; OR = 0.26). The associations between GJH and reproducible reciprocal clicking or limited mouth opening were statistically significant in a trend test. No association was observed between hypermobility and myalgia/arthralgia (RDC/TMD Group I/IIIa). In conclusion, GJH was found to be associated with non-painful subtypes of TMD.

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“…Although intuitively of importance, enhanced patient experience of care also matters on account of an important range of other associations reported in the research literature, including improved safety-related outcomes, 38 improved self-reported health and well-being, 39 enhanced recovery, 31 increased uptake of preventative health interventions 40,41 and reduced utilisation of health-care services including hospitalisation and emergency department visits. 42 …”

Section: Patient Experience Mattersmentioning

confidence: 99%

Improving patient experience in primary care: a multimethod programme of research on the measurement and improvement of patient experience

Burt

Campbell

Abel

et al. 2017

Programme Grants Appl Res

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BackgroundThere has been an increased focus towards improving quality of care within the NHS in the last 15 years; as part of this, there has been an emphasis on the importance of patient feedback within policy, through National Service Frameworks and the Quality and Outcomes Framework. The development and administration of large-scale national patient surveys to gather representative data on patient experience, such as the national GP Patient Survey in primary care, has been one such initiative. However, it remains unclear how the survey is used by patients and what impact the data may have on practice.ObjectivesOur research aimed to gain insight into how different patients use surveys to record experiences of general practice; how primary care staff respond to feedback; and how to engage primary care staff in responding to feedback.MethodsWe used methods including quantitative survey analyses, focus groups, interviews, an exploratory trial and an experimental vignette study.Results(1)Understanding patient experience data. Patients readily criticised their care when reviewing consultations on video, although they were reluctant to be critical when completing questionnaires. When trained raters judged communication during a consultation to be poor, a substantial proportion of patients rated the doctor as ‘good’ or ‘very good’. Absolute scores on questionnaire surveys should be treated with caution; they may present an overoptimistic view of general practitioner (GP) care. However, relative rankings to identify GPs who are better or poorer at communicating may be acceptable, as long as statistically reliable figures are obtained. Most patients have a particular GP whom they prefer to see; however, up to 40% of people who have such a preference are unable regularly to see the doctor of their choice. Users of out-of-hours care reported worse experiences when the service was run by a commercial provider than when it was run by a not-for profit or NHS provider. (2)Understanding patient experience in minority ethnic groups. Asian respondents to the GP Patient Survey tend to be registered with practices with generally low scores, explaining about half of the difference in the poorer reported experiences of South Asian patients than white British patients. We found no evidence that South Asian patients used response scales differently. When viewing the same consultation in an experimental vignette study, South Asian respondents gave higher scores than white British respondents. This suggests that the low scores given by South Asian respondents in patient experience surveys reflect care that is genuinely worse than that experienced by their white British counterparts. We also found that service users of mixed or Asian ethnicity reported lower scores than white respondents when rating out-of-hours services. (3)Using patient experience data. We found that measuring GP–patient communication at practice level masks variation between how good individual doctors are within a practice. In general practices and in out-of-hours centres, staff were sceptical about the value of patient surveys and their ability to support service reconfiguration and quality improvement. In both settings, surveys were deemed necessary but not sufficient. Staff expressed a preference for free-text comments, as these provided more tangible, actionable data. An exploratory trial of real-time feedback (RTF) found that only 2.5% of consulting patients left feedback using touch screens in the waiting room, although more did so when reminded by staff. The representativeness of responding patients remains to be evaluated. Staff were broadly positive about using RTF, and practices valued the ability to include their own questions. Staff benefited from having a facilitated session and protected time to discuss patient feedback.ConclusionsOur findings demonstrate the importance of patient experience feedback as a means of informing NHS care, and confirm that surveys are a valuable resource for monitoring national trends in quality of care. However, surveys may be insufficient in themselves to fully capture patient feedback, and in practice GPs rarely used the results of surveys for quality improvement. The impact of patient surveys appears to be limited and effort should be invested in making the results of surveys more meaningful to practice staff. There were several limitations of this programme of research. Practice recruitment for our in-hours studies took place in two broad geographical areas, which may not be fully representative of practices nationally. Our focus was on patient experience in primary care; secondary care settings may face different challenges in implementing quality improvement initiatives driven by patient feedback. Recommendations for future research include consideration of alternative feedback methods to better support patients to identify poor care; investigation into the factors driving poorer experiences of communication in South Asian patient groups; further investigation of how best to deliver patient feedback to clinicians to engage them and to foster quality improvement; and further research to support the development and implementation of interventions aiming to improve care when deficiencies in patient experience of care are identified.FundingThe National Institute for Health Research Programme Grants for Applied Research programme.

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A randomised controlled trial to assess the impact of a package comprising a patient-orientated, evidence-based self-help guidebook and patient-centred consultations on disease management and satisfaction in inflammatory bowel disease

Cited by 60 publications

References 120 publications

Move for Change Part III: a European survey evaluating the impact of the EPDA Charter for People with Parkinson's Disease

Move for Change Part III: a European survey evaluating the impact of the EPDA Charter for People with Parkinson's Disease

Association between generalized joint hypermobility and signs and diagnoses of temporomandibular disorders

Improving patient experience in primary care: a multimethod programme of research on the measurement and improvement of patient experience

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