Martin Eden

Patients’ Experiences of Shared Decision Making in Primary Care Practices in the United Kingdom

Background. Shared decision making (SDM) and patient self-management support are key components of US and UK policy for chronic disease management, whereby SDM is seen as enhancing physician-patient negotiation around self-management. The WISE trial is implementing training in self-management support for primary care physicians in one UK region. This article describes preintervention levels of patient-reported SDM and explores how this varies with patient and practice characteristics. Methods. We analyzed baseline data from a cluster randomized controlled trial for 2965 patients with diabetes, chronic obstructive pulmonary disease, and irritable bowel syndrome (IBS) from 29 family practices. Patient-level measures included self-report of chronic conditions, SDM (Health Care Climate Questionnaire [HCCQ]), health status, and demographic characteristics. Area and practice characteristics included chronic disease workload and socioeconomic deprivation. Results. The mean SDM score was 75 (out of 100), but the range was wide. The mean score was lower for IBS patients but did not vary with other disease conditions. Younger patients and those with poorer health status reported lower degrees of SDM. No associations were found with practice characteristics. Limitations. The study was restricted to one socioeconomically deprived region, and hence results may not be nationally representative of the United Kingdom. Ceiling effects on SDM scores may limit the utility of the HCCQ. Conclusions. Lower ratings from some patient groups may reflect differences in expectations rather than differences in physician behavior. Overall levels of SDM were high, and no patient or practice characteristic represented a serious barrier to SDM. However, we cannot say to what extent SDM in this chronic population addressed self-management issues rather than clinical care. More nuanced measures of SDM are required that distinguish between different forms of care.

Valuing the benefits of genetic testing for retinitis pigmentosa: a pilot application of the contingent valuation method

Background Technological advances present an opportunity for more people with, or at risk of, developing retinitis pigmentosa (RP) to be offered genetic testing. Valuation of these tests using current evaluative frameworks is problematic since benefits may be derived from diagnostic information rather than improvements in health. This pilot study aimed to explore if contingent valuation method (CVM) can be used to value the benefits of genetic testing for RP. Methods CVM was used to elicit willingness-to-pay (WTP) values for (1) genetic counselling and (2) genetic counselling with genetic testing. Telephone and face-to-face interviews with a purposive sample of individuals with (n=25), and without (n=27), prior experience of RP were used to explore the feasibility and validity of CVM in this context. Results Faced with a hypothetical scenario, the majority of participants stated that they would seek genetic counselling and testing in the context of RP. Between participant groups, respondents offered similar justifications for stated WTP values. Overall stated WTP was higher for genetic counselling plus testing (median=£524.00) compared with counselling alone (median=£224.50). Between-group differences in stated WTP were statistically significant; participants with prior knowledge of the condition were willing to pay more for genetic ophthalmology services. Conclusions Participants were able to attach a monetary value to the perceived potential benefit that genetic testing offered regardless of prior experience of the condition. This exploratory work represents an important step towards evaluating these services using formal cost–benefit analysis.

The UK pharmacy degree: Attrition rates and demographics of non-completers

Introduction: While it is known that a significant proportion of students within the higher education system do not graduate as expected, knowledge about student attrition in pharmacy is limited. A greater understanding of attrition rates will allow workforce planners and policy makers to estimate the number of new pharmacists that can be expected to join the register each year. Aim: This paper aims to provide information on attrition among pharmacy students in the UK. Method: Data are collated from a range of sources to explore trends or patterns in attrition according to factors such as gender, institution and student type. Results: Between the years 1994 and 2000 overall attrition reached a peak (19%) in 1997, although time series analysis found no significant trend ( p = 0.612). Attrition rates vary by institution, overseas compared with home students and male students compared with females are at greater risk of dropping out. Conclusion: Changes to the way in which student data are collected are recommended, as it is currently difficult to track a cohort with absolute certainty. Nevertheless, the paper draws attention to the extent to which attrition from the pharmacy degree occurs, enabling workforce planners to estimate future intake onto the professional register.

Toward health technology assessment of whole-genome sequencing diagnostic tests: challenges and solutions

Whole-genome sequencing (WGS) is being applied within research settings across Europe to develop genomic WGS-based diagnostic tests. The focus of this perspective paper is to describe if, and how, current approaches of health technology assessment could be applied to WGS-based diagnostic tests. This perspective draws on the collective view from a trans-European multidisciplinary consortium of methodologists, clinicians and scientists. Specific challenges can be described by using the PICO (population, intervention, comparator, outcome) framework to inform health technology assessment. Practical solutions are suggested which require joined-up, multidisciplinary working across healthcare systems using existing expert networks so that emergent issues for the health technology assessment of WGS can be met in a timely fashion.

Critical points for an accurate human genome analysis

Next‐generation sequencing is radically changing how DNA diagnostic laboratories operate. What started as a single‐gene profession is now developing into gene panel sequencing and whole‐exome and whole‐genome sequencing (WES/WGS) analyses. With further advances in sequencing technology and concomitant price reductions, WGS will soon become the standard and be routinely offered. Here, we focus on the critical steps involved in performing WGS, with a particular emphasis on points where WGS differs from WES, the important variables that should be taken into account, and the quality control measures that can be taken to monitor the process. The points discussed here, combined with recent publications on guidelines for reporting variants, will facilitate the routine implementation of WGS into a diagnostic setting.

Exploring the feasibility of delivering standardized genomic care using ophthalmology as an example

Purpose:Broadening access to genomic testing and counseling will be necessary to realize the benefits of personalized health care. This study aimed to assess the feasibility of delivering a standardized genomic care model for inherited retinal dystrophy (IRD) and of using selected measures to quantify its impact on patients.Methods:A pre-/post- prospective cohort study recruited 98 patients affected by IRD to receive standardized multidisciplinary care. A checklist was used to assess the fidelity of the care process. Three patient-reported outcome measures—the Genetic Counselling Outcome Scale (GCOS-24), the ICEpop CAPability measure for Adults (ICECAP-A), and the EuroQol 5-dimension questionnaire (EQ-5D)—and a resource-use questionnaire were administered to investigate rates of missingness, ceiling effects, and changes over time.Results:The care model was delivered consistently. Higher rates of missingness were found for the genetic-specific measure (GCOS-24). Considerable ceiling effects were observed for the generic measure (EQ-5D). The ICECAP-A yielded less missing data without significant ceiling effects. It was feasible to use telephone interviews for follow-up data collection.Conclusion:The study highlighted challenges and solutions associated with efforts to standardize genomic care for IRD. The study identified appropriate methods for a future definitive study to assess the clinical effectiveness and cost-effectiveness of the care model.Genet Med advance online publication 02 March 2017

Identifying variation in models of care for the genomic-based diagnosis of inherited retinal dystrophies in the United Kingdom.

PurposeAdvances in genomic technologies are prompting a realignment of diagnostic and management pathways for rare inherited disease. New models of care are being developed as genomic-based diagnostic testing becomes increasingly relevant within more and more aspects of medicine. This study describes current care models for the provision of a genomic-based diagnosis for patients with inherited retinal dystrophy (IRD) in UK clinical practice.MethodsA structured telephone survey, conducted (in 2014) with all 23 UK Regional Genetics Centres and a sample of specialist ophthalmology centres (n=4), was used to describe models of service delivery and current levels of genomic-based diagnostic testing. Quantitative data were summarised using descriptive statistics. Responses to open-ended questions were summarised using thematic analysis.ResultsOf the 27 centres 10 of them saw IRD patients in ‘generic’ clinics and 17 centres offered ophthalmic-specific clinics. Extensive regional variation was observed in numbers of patients seen and in how care for the diagnosis and management of IRD was provided.ConclusionsUnderstanding current practice is a necessary first step in the development and evaluation of complex interventions, such as care models for the genomic-based diagnosis of inherited eye conditions. Presented findings here relating to disparities in care provision are potentially linked to previously reported evidence of perceived unmet needs and expectations of IRD service users. This work provides a foundation for the integration of new care models in mainstream medicine.