Relational continuity and patients’ perception of GP trust and respect:a qualitative study

BACKGROUND: Despite the benefits of relational continuity of care, particularly for patients with multimorbidity, the traditional model of continuity is changing. Revisiting what patients with ongoing problems want from relational continuity could encourage initiatives to achieve these within a modern healthcare system. AIM: To examine the attributes of GPs that patients with long-term conditions value most, and which attributes patients believe are facilitated by relational continuity. DESIGN AND SETTING: Qualitative study in UK general practice. METHOD: A thematic analysis was carried out, based on secondary analysis of interviews with 25 patients with long-term conditions that were originally conducted to inform a patient-reported outcome measure for primary care. RESULTS: Patients with long-term conditions wanted their GPs to be clinically competent, to examine, listen to, care for, and take time with them, irrespective of whether they have seen them before. They believed that relational continuity facilitates a GP knowing their history, giving consistent advice, taking responsibility and action, and trusting and respecting them. Patients acknowledged practical difficulties and safety issues in achieving the first three of these without relational continuity. However, patients felt that GPs should trust and respect them even when continuity was not possible. CONCLUSION: Policy initiatives promoting continuity with a GP or healthcare team should continue. Many patients see continuity as a safety issue. When patients experience relationship discontinuity, they often feel that they are not taken seriously or believed by their GP. GPs should therefore consistently seek to visibly demonstrate trust in their patients, particularly when they have not seen them before

Development and validation of the Multimorbidity Treatment Burden Questionnaire (MTBQ)

OBJECTIVE: To develop and validate a new scale to assess treatment burden (the effort of looking after one's health) for patients with multimorbidity. DESIGN: Mixed-methods. SETTING: UK primary care. PARTICIPANTS: Content of the Multimorbidity Treatment Burden Questionnaire (MTBQ) was based on a literature review and views from a patient and public involvement group. Face validity was assessed through cognitive interviews. The scale was piloted and the final version was tested in 1546 adults with multimorbidity (mean age 71 years) who took part in the 3D Study, a cluster randomised controlled trial. For each question, we examined the proportion of missing data and the distribution of responses. Factor analysis, Cronbach's alpha, Spearman's rank correlations and longitudinal regression assessed dimensional structure, internal consistency reliability, construct validity and responsiveness, respectively. We assessed interpretability by grouping the global MTBQ scores into zero and tertiles (>0) and comparing participant characteristics across these categories. RESULTS: Cognitive interviews found good acceptability and content validity. Factor analysis supported a one-factor solution. Cronbach's alpha was 0.83, indicating internal consistency reliability. The MTBQ score had a positive association with a comparator treatment burden scale (rs 0.58, P<0.0001) and with self-reported disease burden (rs 0.43, P<0.0001), and a negative association with quality of life (rs-0.36, P<0.0001) and self-rated health (rs-0.36, P<0.0001). Female participants, younger participants and participants with mental health conditions were more likely to have high treatment burden scores. Changes in MTBQ score over 9-month follow-up were associated, as expected, with changes in measures of quality of life (EuroQol five dimensions, five level questionnaire) and patient-centred care (Patient Assessment of Chronic Illness Care). CONCLUSION: The MTBQ is a 10-item measure of treatment burden for patients with multimorbidity that has demonstrated good content validity, construct validity, reliability and responsiveness. It is a useful research tool for assessing the impact of interventions on treatment burden. TRIAL REGISTRATION NUMBER: ISRCTN06180958

Patient and practitioners' views on the most important outcomes arising from primary care consultations:a qualitative study

BACKGROUND: Primary care clinicians often address multiple patient problems, with a range of possible outcomes. There is currently no patient-reported outcome measure (PROM) which covers this range of outcomes. Consequently, many researchers use PROMs that do not capture the full impact of primary care services. In order to identify what outcomes a PROM for primary care would need to include, we conducted interviews with patients and practitioners. This paper reports these patient and practitioners’ views on the outcomes arising from primary care consultations. METHODS: Semi-structured interviews were held with 30 patients and eight clinicians across five sites in Bristol. Interviews were audio-recorded, transcribed and analysed thematically. We used a broad definition of health outcome as ‘the impacts of healthcare on health, or a patient’s ability to impact health’ to identify outcomes through this process. RESULTS: 10 outcome groups were identified. These occupied 3 domains: Health Empowerment: These are the internal and external resources which enable patients to improve their health. This involves 1) patients’ understanding of their illnesses, 2) ability to self-care and stay healthy, 3) agreeing and adhering to a patient-clinician shared plan, 4) confidence in seeking healthcare and 5) access to support. Health Status: This involves 6) reduction of symptoms and 7) reducing the impact of symptoms on patients’ lives. Health Perceptions: This involves 8) patients’ satisfaction with their health, 9) health concerns, and 10) confidence in their future health. The structure, organisation and nature of primary care means it can affect all 3 domains. CONCLUSIONS: No existing PROM captures all these outcomes. For example, many health empowerment PROMs do not consider patient preference on empowerment. Many health status tools are not responsive to changes resulting from primary care. Health perceptions PROMs have generally been designed for measuring personality traits rather than outcomes. This study provides a platform for designing a new PROM containing outcomes that matter to patients and can be influenced by primary care. Such a PROM would greatly enhance the value of primary care research. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s12875-015-0323-9) contains supplementary material, which is available to authorized users

Standardized parenteral nutrition for the transition phase in preterm infants: a bag that fits

The optimal composition of standardized parenteral nutrition (SPN) is not yet known, contributing to nutrient deficit accrual and growth failure, with the period of parenteral nutrition weaning, i.e., transition (TN) phase, being identified as particularly vulnerable. We created a comprehensive nutrition database, representative of the nutritional course of a diverse range of preterm infants (n = 59, birth weight ≤ 1500 g, gestation < 34 weeks) by collecting hourly macronutrient intake data as part of a prospective, observational study over 19 months. Using a nutrient modeling technique for the TN phase, various amino acid (AA) concentrations of SPN were tested within the database, whilst acknowledging the nutritional contribution from enteral feeds until target AA intakes were consistently achieved. From the modeling, the AA composition of SPN was determined at 3.5 g/100 mL, which was the maximum to avoid exceeding target intakes at any point in the TN phase. However, in order to consistently achieve target AA intakes, additional nutritional strategies were required, which included increasing the exclusion of enteral feeds in fluid and nutrient calculations from <20 mL/kg/day to <40 mL/kg/day, and earlier fortification of breastmilk at 80 mL/kg/day. This data-driven nutrient modeling process supported the development of an improved SPN regimen for our preterm population in the TN phase

The person-based development and realist evaluation of a summary report for GP consultations

Background: Use of telephone, video and e-consultations is increasing. These can make consultations more transactional. This study aimed to develop a complex intervention to address patients’ concerns more comprehensively in general practice and test the feasibility of this in a cluster-randomised framework. The complex intervention used two technologies: a patient-completed pre-consultation form used at consultation opening and a doctor-provided summary report provided at consultation closure. This paper reports on the development and realist evaluation of the summary report. Methods: A person-based approach was used to develop the summary report. An electronic protocol was designed to automatically generate the report after GPs complete a clinical template in the patient record. This was tested with 45 patients in 3 rounds each, with iterative adjustments made based on feedback after each round. Subsequently, an intervention incorporating the pre-consultation form with the summary report was then tested in a cluster-randomised framework with 30 patients per practice in six practices: four randomised to intervention, and two to control. An embedded realist evaluation was carried out. The main feasibility study results are reported elsewhere. Results: Intervention Development: 15 patients were recruited per practice. Eight patients and six GPs were interviewed and 18 changes made. The summary report improved substantially; GPs and patients in the final practice were more satisfied with the report than the first practice. Realist evaluation: The summary was most useful for consultations when safety-netting advice was important or with multiple complex follow-up steps in patients who have difficulty remembering or communicating. It generated greater clarity on the follow-up and greater patient empowerment and reassurance. Conclusions: The person-based approach was successful. The summary report creates clarity, empowerment and reassurance in certain consultations and patients. As it takes a few minutes per patient, GPs prefer to select patients who will benefit most

Identification, description and appraisal of generic PROMs for primary care:A systematic review

Abstract Background Patients attend primary care with many types of problems and to achieve a range of possible outcomes. There is currently a lack of patient-reported outcome measures (PROMs) designed to capture these diverse outcomes. The objective of this systematic review was to identify, describe and appraise generic PROMs suitable for measuring outcomes from primary care. Methods We carried out a systematic Medline search, supplemented by other online and hand-searches. All potentially relevant PROMs were itemised in a long-list. Each PROM in the long-list which met inclusion criteria was included in a short-list. Short-listed PROMs were then described in terms of their measurement properties and construct, based on a previously published description of primary care outcome as three constructs: health status, health empowerment and health perceptions. PROMs were appraised in terms of extent of psychometric testing (extensive, moderate, low) and level of responsiveness (high, medium, low, unknown). Results More than 5000 abstracts were identified and screened to identify PROMs potentially suitable for measuring outcomes from primary care. 321 PROMs were long-listed, and twenty PROMs were catalogued in detail. There were five PROMs which measured change directly, without need for a baseline. Although these had less strong psychometric properties, they may be more responsive to change than PROMs which capture status at a point in time. No instruments provided coverage of all three constructs. Of the health status questionnaires, the most extensively tested was the SF-36. Of the health empowerment instruments, the PEI, PAM and heiQ provided the best combination of responsiveness and psychometric testing. The health perceptions instruments were all less responsive to change, and may measure a form of health perception which is difficult to shift in primary care. Conclusions This systematic review is the first of its kind to identify papers describing the development and validation of generic PROMs suitable for measuring outcomes from primary care. It identified that: 1) to date, there is no instrument which comprehensively covers the outcomes commonly sought in primary care, and 2) there are different benefits both to PROMs which measure status at a point in time, and PROMs which measure change directly

Facilitating repertoires of coordination, opposition distinction, and comparison in young children with autism

According to Relational Frame Theory (rft), repertoires of derived relational responding are essential for the development of human verbal behavior. As a result, the implications of relational framing for the education of developmentally disabled populations may be immense. Although at the level of process, there appears to be little difference among specific relational frames, there is potentially a natural sequence to their emergence in typical development. However, there is very little published evidence of training children across multiple frames consecutively. The current research comprised four studies that explored an extended sequence of training and testing in the relational frames of coordination, opposition, distinction, and comparison in a sample of nine young children with autism. The results demonstrate the relative ease with which relational deficits in these areas were remediated. In addition, the relationship between outcomes on the Verbal Behavior Milestones and Placement Program-Assessment (vb-mapp) and individual relational training requirements was investigated

Primary care outcomes questionnaire:Psychometric testing of a new instrument

Background: Patients attend primary care for many reasons and to achieve a range of possible outcomes. There is currently no Patient Reported Outcome Measure (PROM) designed to capture these diverse outcomes, and trials of interventions in primary care may thus fail to detect beneficial effects. Aim: This study describes the psychometric testing of the Primary Care Outcomes Questionnaire (PCOQ), which was designed to capture a broad range of outcomes relevant to primary care. Design and setting: Questionnaires were administered in primary care in South West England. Method: Patients completed the PCOQ in GP waiting rooms before a consultation, and a second questionnaire, including the PCOQ and seven comparator PROMs, after 1 week. Psychometric testing included exploratory factor analysis on the PCOQ, internal consistency, correlation coefficients between domain scores and comparator measures, and repeated measures effect sizes indicating change across 1 week. Results: In total, 602 patients completed the PCOQ at baseline, and 264 (44%) returned the follow-up questionnaire. Exploratory factor analysis suggested four dimensions underlying the PCOQ items: health and wellbeing, health knowledge and self-care, confidence in health provision, and confidence in health plan. Each dimension was internally consistent and correlated as expected with comparator PROMs, providing evidence of construct validity. Patients reporting an improvement in their main problem exhibited small to moderate improvements in relevant domain scores on the PCOQ. Conclusion: The PCOQ was acceptable, feasible, showed strong psychometric properties, and was responsive to change. It is a promising new tool for assessment of outcomes of primary care interventions from a patient perspective

Optimising preterm nutrition: present and future

The goal of preterm nutrition in achieving growth and body composition approximating that of the fetus of the same postmenstrual age is difficult to achieve. Current nutrition recommendations depend largely on expert opinion, due to lack of evidence, and are primarily birth weight based, with no consideration given to gestational age and/or need for catch-up growth. Assessment of growth is based predominately on anthropometry, which gives insufficient attention to the quality of growth. The present paper provides a review of the current literature on the nutritional management and assessment of growth in preterm infants. It explores several approaches that may be required to optimise nutrient intakes in preterm infants, such as personalising nutritional support, collection of nutrient intake data in real-time, and measurement of body composition. In clinical practice, the response to inappropriate nutrient intakes is delayed as the effects of under- or overnutrition are not immediate, and there is limited nutritional feedback at the cot-side. The accurate and non-invasive measurement of infant body composition, assessed by means of air displacement plethysmography, has been shown to be useful in assessing quality of growth. The development and implementation of personalised, responsive nutritional management of preterm infants, utilising real-time nutrient intake data collection, with ongoing nutritional assessments that include measurement of body composition is required to help meet the individual needs of preterm infants

The contribution of qualitative research in designing a complex intervention for secondary prevention of coronary heart disease in two different healthcare systems

BACKGROUND: Developing complex interventions for testing in randomised controlled trials is of increasing importance in healthcare planning. There is a need for careful design of interventions for secondary prevention of coronary heart disease (CHD). It has been suggested that integrating qualitative research in the development of a complex intervention may contribute to optimising its design but there is limited evidence of this in practice. This study aims to examine the contribution of qualitative research in developing a complex intervention to improve the provision and uptake of secondary prevention of CHD within primary care in two different healthcare systems. METHODS: In four general practices, one rural and one urban, in Northern Ireland and the Republic of Ireland, patients with CHD were purposively selected. Four focus groups with patients (N = 23) and four with staff (N = 29) informed the development of the intervention by exploring how it could be tailored and integrated with current secondary prevention activities for CHD in the two healthcare settings. Following an exploratory trial the acceptability and feasibility of the intervention were discussed in four focus groups (17 patients) and 10 interviews (staff). The data were analysed using thematic analysis. RESULTS: Integrating qualitative research into the development of the intervention provided depth of information about the varying impact, between the two healthcare systems, of different funding and administrative arrangements, on their provision of secondary prevention and identified similar barriers of time constraints, training needs and poor patient motivation. The findings also highlighted the importance to patients of stress management, the need for which had been underestimated by the researchers. The qualitative evaluation provided depth of detail not found in evaluation questionnaires. It highlighted how the intervention needed to be more practical by minimising administration, integrating role plays into behaviour change training, providing more practical information about stress management and removing self-monitoring of lifestyle change. CONCLUSION: Qualitative research is integral to developing the design detail of a complex intervention and tailoring its components to address individuals' needs in different healthcare systems. The findings highlight how qualitative research may be a valuable component of the preparation for complex interventions and their evaluation