Developing resources to support the diagnosis and management of Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME) in primary care: a qualitative study.

BACKGROUND: NICE guidelines emphasise the need for a confident, early diagnosis of Chronic Fatigue Syndrome/ Myalgic Encephalitis (CFS/ME) in Primary Care with management tailored to the needs of the patient. Research suggests that GPs are reluctant to make the diagnosis and resources for management are currently inadequate. This study aimed to develop resources for practitioners and patients to support the diagnosis and management of CFS/ME in primary care. METHODS: Semi structured interviews were conducted with patients, carers, GPs, practice nurses and CFS/ME specialists in North West England. All interviews were audio recorded, transcribed and analysed qualitatively using open explorative thematic coding. Two patient involvement groups were consulted at each stage of the development of resources to ensure that the resources reflect everyday issues faced by people living with CFS/ME. RESULTS: Patients and carers stressed the importance of recognising CFS/ME as a legitimate condition, and the need to be believed by health care professionals. GPs and practice nurses stated that they do not always have the knowledge or skills to diagnose and manage the condition. They expressed a preference for an online training package. For patients, information on getting the most out of a consultation and the role of carers was thought to be important. Patients did not want to be overloaded with information at diagnosis, and suggested information should be given in steps. A DVD was suggested, to enable information sharing with carers and family, and also for those whose symptoms act as a barrier to reading. CONCLUSION: Rather than use a top-down approach to the development of training for health care practitioners and information for patients and carers, we have used data from key stakeholders to develop a patient DVD, patient leaflets to guide symptom management and a modular e-learning resource which should equip GPs to diagnose and manage CFS/ME effectively, meet NICE guidelines and give patients acceptable, evidence-based information.

Clinical implications of the Royal College of Physicians three questions in routine asthma care: a real-life validation study.

BACKGROUND: Annual recording of the Royal College of Physicians three questions (RCP3Q) morbidity score is rewarded within the UK 'pay-for-performance' Quality and Outcomes Framework. AIMS: To investigate the performance of the RCP3Qs for assessing control in real-life practice compared with the validated Asthma Control Questionnaire (ACQ) administered by self-completed questionnaire. METHODS: We compared the RCP3Q score extracted from a patient's computerised medical record with the ACQ self-completed after the consultation. The anonymous data were paired by practice, age, sex, and dates of completion. We calculated the sensitivity and specificity of the RCP3Q scale compared with the threshold for good/poor asthma control (ACQ ≥1). RESULTS: Of 291 ACQ questionnaires returned from 12 participating practices, 129 could be paired with complete RCP3Q data. Twenty-five of 27 patients who scored zero on the RCP3Q were well controlled (ACQ <1). An RCP3Q score ≥1 predicted inadequate control (ACQ ≥1) with a sensitivity of 0.96 and specificity of 0.34. Comparable values for RCP3Q≥2 were sensitivity 0.50 and specificity 0.94. The intraclass correlation coefficient of 0.13 indicated substantial variability between practices. Exacerbations and use of reliever inhalers were moderately correlated with ACQ (Spearman's rho 0.3 and 0.35) and may reflect different aspects of control. CONCLUSIONS: In routine practice, an RCP3Q score of zero indicates good asthma control and a score of 2 or 3 indicates poor control. An RCP3Q score of 1 has good sensitivity but poor specificity for suboptimal control and should provoke further enquiry and consideration of other aspects of control such as exacerbations and use of reliever inhalers.

Patients' views of pay for performance in primary care: a qualitative study.

BACKGROUND: Many countries use pay-for-performance schemes to reward family practices financially for achieving quality indicators. The views of patients on pay for performance remain largely unexplored. AIM: To gain the views of family practice patients on the United Kingdom pay-for-performance Quality and Outcomes Framework (QOF). DESIGN AND SETTING: Interviews with 52 patients were conducted in 15 family practices across England. All patients had at least one long-term condition that had been diagnosed before the introduction of the QOF in 2004. METHOD: Semi-structured interviews analysed using open explorative thematic coding. RESULTS: Few patients had heard of the QOF or had noticed changes to the structure or process of their care. However, where they were noted, changes to consultations such as increased use of computers and health checks initiated by the GP or practice nurse were seen as good practice. The majority of patients were surprised to hear their practice received bonuses for doing 'simple things'. Some patients also raised concerns over potential unintended consequences of pay-for-performance frameworks, such as a reduced focus on non-incentivised areas. CONCLUSION: This study adds a unique patient perspective to the debate around the impact of pay-for-performance schemes and consequences on patient care. Patients' views, experiences, and concerns about pay for performance mostly chime with previously described opinions of primary care staff. Patient surprise and concern around incentivising basic processes of care shows how patient views are vital when monitoring and evaluating a scheme that is designed to improve patient care.

Recording patient preferences for end-of-life care as an incentivized quality indicator: what do general practice staff think?

INTRODUCTION: Since April 2009, indicators for the UK Quality and Outcomes Framework pilot have been developed and piloted across a nationally representative sample of practices. In October 2009 a single palliative care indicator was piloted for 6 months that looked at, 'the percentage of patients on the palliative care register who have a preferred place to receive end-of-life care documented in the records'. AIM: The aim of this study was to gain the views and experiences of general practice staff on whether the inclusion of a single incentivized indicator to record the preferred place to receive end-of-life care would improve the quality of palliative care. Any issues arising from its implementation in a pay-for-performance scheme were also explored. METHODS: Interviews took place with 57 members of staff in 24 practices: 21 GPs, 16 practice managers, 12 nurses and eight others (mostly information technology experts). RESULTS: The indicator was not deemed appropriate for incentivization due to concerns about incentivizing an isolated, single issue within a multi-faceted, multi-disciplinary and complex topic. Palliative care was seen to be too sensitive and patient specific to be amenable to population-level quality measurement. In implementation, the indicator would pose potential harm to patients who may be asked about their end-of-life care at an inappropriate time and by a member of staff who may not be best placed to address this sensitive topic. CONCLUSIONS: The most appropriate time to ask a patient about end-of-life care is subjective and patient specific and therefore does not lend itself to an inflexible single indicator. Focusing on one isolated question simplifies and distracts from a multi-faceted and complex issue and may lead to patient harm.

Framework and indicator testing protocol for developing and piloting quality indicators for the UK quality and outcomes framework.

BACKGROUND: Quality measures should be subjected to a testing protocol before being used in practice using key attributes such as acceptability, feasibility and reliability, as well as identifying issues derived from actual implementation and unintended consequences. We describe the methodologies and results of an indicator testing protocol (ITP) using data from proposed quality indicators for the United Kingdom Quality and Outcomes Framework (QOF). METHODS: The indicator testing protocol involved a multi-step and methodological process: 1) The RAND/UCLA Appropriateness Method, to test clarity and necessity, 2) data extraction from patients' medical records, to test technical feasibility and reliability, 3) diaries, to test workload, 4) cost-effectiveness modelling, and 5) semi-structured interviews, to test acceptability, implementation issues and unintended consequences. Testing was conducted in a sample of representative family practices in England. These methods were combined into an overall recommendation for each tested indicator. RESULTS: Using an indicator testing protocol as part of piloting was seen as a valuable way of testing potential indicators in 'real world' settings. Pilot 1 (October 2009-March 2010) involved thirteen indicators across six clinical domains and twelve indicators passed the indicator testing protocol. However, the indicator testing protocol identified a number of implementation issues and unintended consequences that can be rectified or removed prior to national roll out. A palliative care indicator is used as an exemplar of the value of piloting using a multiple attribute indicator testing protocol - while technically feasible and reliable, it was unacceptable to practice staff and raised concerns about potentially causing actual patient harm. CONCLUSIONS: This indicator testing protocol is one example of a protocol that may be useful in assessing potential quality indicators when adapted to specific country health care settings and may be of use to policy-makers and researchers worldwide to test the likely effect of implementing indicators prior to roll out. It builds on and codifies existing literature and other testing protocols to create a field testing methodology that can be used to produce country specific quality indicators for pay-for-performance or quality improvement schemes.

Identifying unintended consequences of quality indicators: a qualitative study.

BACKGROUND: For the first 5 years of the UK primary care pay for performance scheme, the Quality and Outcomes Framework (QOF), quality indicators were introduced without piloting. However, in 2009, potential new indicators were piloted in a nationally representative sample of practices. This paper describes an in-depth exploration of family physician, nurse and other primary-care practice staff views of the value of piloting with a particular focus on unintended consequences of 13 potential new QOF indicators. METHOD: Fifty-seven family-practice professionals were interviewed in 24 representative practices across England. RESULTS: Almost all interviewees emphasised the value of piloting in terms of an opportunity to identify unintended consequences of potential QOF indicators in 'real world' settings with staff who deliver day-to-day care to patients. Four particular types of unintended consequences were identified: measure fixation, tunnel vision, misinterpretation and potential gaming. 'Measure fixation,' an inappropriate attention on isolated aspects of care, appeared to be the key unintended consequence. In particular, if the palliative care indicator had been introduced without piloting, this might have incentivised poorer care in a minority of practices with potential harm to vulnerable patients. CONCLUSIONS: It is important to identify concerns and experiences about unintended consequences of indicators at an early stage when there is time to remove or adapt problem indicators. Since the UK government currently spends over £1 billion each year on QOF, the £150,000 spent on each piloting cohort (0.0005% of the total QOF budget) appears to be good value for money.

Exception reporting in the Quality and Outcomes Framework: views of practice staff - a qualitative study.

BACKGROUND: Exception reporting allows practices to exclude eligible patients from indicators or an entire clinical domain of the Quality and Outcomes Framework (QOF). It is a source of contention, viewed by some as a 'gaming' mechanism. AIM: To explore GP and practice staff views and experiences of exception reporting in the QOF. DESIGN OF STUDY: Qualitative semi-structured interviews. SETTING: Interviews with 24 GPs, 20 practice managers, 13 practice nurses, and nine other staff were conducted in 27 general practices in the UK. METHOD: Semi-structured interviews, analysed using open explorative thematic coding. RESULTS: Exception reporting was seen as a clinically necessary part of the QOF. Exempting patients, particularly for discretionary reasons, was seen as an 'exception to the rule' that was justified either in terms of practising patient-centred care within a framework of population-based health measures or because of the poor face validity of the indicators. Rates in all practices were described as minimal and the threat of external scrutiny from primary care trusts kept rates low. However, GPs were happy to defend using discretionary exception codes for individual patients. Exception reporting was used, particularly at the end of the payment year, to meet unmet targets and to prevent the practice being penalised financially. Overt gaming was seen as something done by 'other' practices. Only two GPs admitted to occasional inappropriate exception reporting. CONCLUSION: Exception reporting is seen by most GPs and practice staff as an important and defensible safeguard against inappropriate treatment or over-treatment of patients. However, a minority of practitioners also saw it as a gaming mechanism.

Teenage drinking, alcohol availability and pricing: a cross-sectional study of risk and protective factors for alcohol-related harms in school children.

BACKGROUND: There is a lack of empirical analyses examining how alcohol consumption patterns in children relate to harms. Such intelligence is required to inform parents, children and policy relating to the provision and use of alcohol during childhood. Here, we examine drinking habits and associated harms in 15-16 year olds and explore how this can inform public health advice on child drinking. METHODS: An opportunistic survey of 15-16 year olds (n = 9,833) in North West England was undertaken to determine alcohol consumption patterns, drink types consumed, drinking locations, methods of access and harms encountered. Cost per unit of alcohol was estimated based on a second survey of 29 retail outlets. Associations between demographics, drinking behaviours, alcohol pricing and negative outcomes (public drinking, forgetting things after drinking, violence when drunk and alcohol-related regretted sex) were examined. RESULTS: Proportions of drinkers having experienced violence when drunk (28.8%), alcohol-related regretted sex (12.5%) and forgetting things (45.3%), or reporting drinking in public places (35.8%), increased with drinking frequency, binge frequency and units consumed per week. At similar levels of consumption, experiencing any negative alcohol-related outcome was lower in those whose parents provided alcohol. Drunken violence was disproportionately associated with being male and greater deprivation while regretted sex and forgetting things after drinking were associated with being female. Independent of drinking behaviours, consuming cheaper alcohol was related to experiencing violence when drunk, forgetting things after drinking and drinking in public places. CONCLUSION: There is no safe level of alcohol consumption for 15-16 year olds. However, while abstinence removes risk of harms from personal alcohol consumption, its promotion may also push children into accessing drink outside family environments and contribute to higher risks of harm. Strategies to reduce alcohol-related harms in children should ensure bingeing is avoided entirely, address the excessively low cost of many alcohol products, and tackle the ease with which it can be accessed, especially outside of supervised environments.