Qualitative systematic reviews are increasing in popularity in evidence based health care. Difficulties have been reported in conducting literature searches of qualitative research using the PICO search tool. An alternative search tool, entitled SPIDER, was recently developed for more effective searching of qualitative research, but remained untested beyond its development team.
In this article we tested the ‘SPIDER’ search tool in a systematic narrative review of qualitative literature investigating the health care experiences of people with Multiple Sclerosis. Identical search terms were combined into the PICO or SPIDER search tool and compared across Ovid MEDLINE, Ovid EMBASE and EBSCO CINAHL Plus databases. In addition, we added to this method by comparing initial SPIDER and PICO tools to a modified version of PICO with added qualitative search terms (PICOS).
Results showed a greater number of hits from the PICO searches, in comparison to the SPIDER searches, with greater sensitivity. SPIDER searches showed greatest specificity for every database. The modified PICO demonstrated equal or higher sensitivity than SPIDER searches, and equal or lower specificity than SPIDER searches. The modified PICO demonstrated lower sensitivity and greater specificity than PICO searches.
The recommendations for practice are therefore to use the PICO tool for a fully comprehensive search but the PICOS tool where time and resources are limited. Based on these limited findings the SPIDER tool would not be recommended due to the risk of not identifying relevant papers, but has potential due to its greater specificity.
Health care; Users’ experiences; Multiple sclerosis (MS); Research evaluation; Research; Qualitative; Systematic reviews
Depression accounts for the greatest disease burden of all mental health disorders, contributes heavily to healthcare costs, and by 2020 is set to become the second largest cause of global disability. Although 10% to 16% of people aged 65 years and over are likely to experience depressive symptoms, the condition is under-diagnosed and often inadequately treated in primary care. Later-life depression is associated with chronic illness and disability, cognitive impairment and social isolation. With a progressively ageing population it becomes increasingly important to refine strategies to identity and manage depression in older people. Currently, management may be limited to the prescription of antidepressants where there may be poor concordance; older people may lack awareness of psychosocial interventions and general practitioners may neglect to offer this treatment option.
CASPER Plus is a multi-centre, randomised controlled trial of a collaborative care intervention for individuals aged 65 years and over experiencing moderate to severe depression. Selected practices in the North of England identify potentially eligible patients and invite them to participate in the study. A diagnostic interview is carried out and participants with major depressive disorder are randomised to either collaborative care or usual care. The recruitment target is 450 participants.
The intervention, behavioural activation and medication management in a collaborative care framework, has been adapted to meet the complex needs of older people. It is delivered over eight to 10 weekly sessions by a case manager liaising with general practitioners.
The trial aims to evaluate the clinical and cost effectiveness of collaborative care in addition to usual GP care versus usual GP care alone. The primary clinical outcome, depression severity, will be measured with the Patient Health Questionnaire-9 (PHQ-9) at baseline, 4, 12 and 18 months. Cost effectiveness analysis will assess health-related quality of life using the SF-12 and EQ-5D and will examine cost-consequences of collaborative care.
A qualitative process evaluation will be undertaken to explore acceptability, gauge the extent to which the intervention is implemented and to explore sustainability beyond the clinical trial.
Results will add to existing evidence and a positive outcome may lead to the commissioning of this model of service in primary care.
ISRCTN45842879 (24 July 2012).
Depression; Major depressive disorder; Older people; Elderly population; Primary care; Collaborative care; Behavioural activation; Psychosocial interventions; Randomised controlled trial; Cost effectiveness analysis; Process evaluation
Case management has been suggested as a way of improving the quality and cost-effectiveness of support for people with dementia. In this study we adapted and implemented a successful United States’ model of case management in primary care in England. The results are reported elsewhere, but a key finding was that little case management took place. This paper reports the findings of the process evaluation which used Normalization Process Theory to understand the barriers to implementation.
Ethnographic methods were used to explore the views and experiences of case management. Interviews with 49 stakeholders (patients, carers, case managers, health and social care professionals) were supplemented with observation of case managers during meetings and initial assessments with patients. Transcripts and field notes were analysed initially using the constant comparative approach and emerging themes were then mapped onto the framework of Normalization Process Theory.
The primary focus during implementation was on the case managers as isolated individuals, with little attention being paid to the social or organizational context within which they worked. Barriers relating to each of the four main constructs of Normalization Process Theory were identified, with a lack of clarity over the scope and boundaries of the intervention (coherence); variable investment in the intervention (cognitive participation); a lack of resources, skills and training to deliver case management (collective action); and limited reflection and feedback on the case manager role (reflexive monitoring).
Despite the intuitive appeal of case management to all stakeholders, there were multiple barriers to implementation in primary care in England including: difficulties in embedding case managers within existing well-established community networks; the challenges of protecting time for case management; and case managers’ inability to identify, and act on, emerging patient and carer needs (an essential, but previously unrecognised, training need). In the light of these barriers it is unclear whether primary care is the most appropriate setting for case management in England. The process evaluation highlights key aspects of implementation and training to be addressed in future studies of case management for dementia.
Dementia; Case management; Patients; Carers; Primary care; Normalization Process Theory
Implementation of long-term condition management interventions rests on the notion of whole systems re-design, where incorporating wider elements of health care systems are integral to embedding effective and integrated solutions. However, most self-management support (SMS) evaluations still focus on particular elements or outcomes of a sub-system. A randomised controlled trial of a SMS intervention (WISE—Whole System Informing Self-management Engagement) implemented in primary care showed no effect on patient-level outcomes. This paper reports on a parallel process evaluation to ascertain influences affecting WISE implementation at patient, clinical and organisational levels. Normalisation Process Theory (NPT) provided a sensitising background and analytical framework.
A multi-method approach using surveys and interviews with organisational stakeholders, practice staff and trial participants about impact of training and use of tools developed for WISE. Analysis was sensitised by NPT (coherence, cognitive participation, collective action and reflective monitoring). The aim was to identify what worked and what did not work for who and in what context.
Interviews with organisation stakeholders emphasised top-down initiation of WISE by managers who supported innovation in self-management. Staff from 31 practices indicated engagement with training but patchy adoption of WISE tools; SMS was neither prioritised by practices nor fitted with a biomedically focussed ethos, so little effort was invested in WISE techniques. Interviews with 24 patients indicated no awareness of any changes following the training of practice staff; furthermore, they did not view primary care as an appropriate place for SMS.
The results contribute to understanding why SMS is not routinely adopted and implemented in primary care. WISE was not embedded because of the perceived lack of relevance and fit to the ethos and existing work. Enacting SMS within primary care practice was not viewed as a legitimate activity or a professional priority. There was failure to, in principle, engage with and identify patients’ support needs. Policy presumptions concerning SMS appear to be misplaced. Implementation of SMS within the health service does not currently account for patient circumstances. Primary care priorities and support for SMS could be enhanced if they link to patients’ broader systems of implementation networks and resources.
Electronic supplementary material
The online version of this article (doi:10.1186/s13012-014-0129-5) contains supplementary material, which is available to authorized users.
Process evaluation; Normalisation Process Theory; Self-management support; Long-term conditions; Primary care
Implementation of self-management support in traditional primary care settings has proved difficult, encouraging the development of alternative models which actively link to community resources. Chronic kidney disease (CKD) is a common condition usually diagnosed in the presence of other co-morbidities. This trial aimed to determine the effectiveness of an intervention to provide information and telephone-guided access to community support versus usual care for patients with stage 3 CKD.
Methods and Findings
In a pragmatic, two-arm, patient level randomised controlled trial 436 patients with a diagnosis of stage 3 CKD were recruited from 24 general practices in Greater Manchester. Patients were randomised to intervention (215) or usual care (221). Primary outcome measures were health related quality of life (EQ-5D health questionnaire), blood pressure control, and positive and active engagement in life (heiQ) at 6 months. At 6 months, mean health related quality of life was significantly higher for the intervention group (adjusted mean difference = 0.05; 95% CI = 0.01, 0.08) and blood pressure was controlled for a significantly greater proportion of patients in the intervention group (adjusted odds-ratio = 1.85; 95% CI = 1.25, 2.72). Patients did not differ significantly in positive and active engagement in life. The intervention group reported a reduction in costs compared with control.
An intervention to provide tailored information and telephone-guided access to community resources was associated with modest but significant improvements in health related quality of life and better maintenance of blood pressure control for patients with stage 3 CKD compared with usual care. However, further research is required to identify the mechanisms of action of the intervention.
Long-term conditions such as chronic obstructive pulmonary disease (COPD) are growing challenges for health services. Psychosocial co-morbidity is associated with poorer quality of life and greater use of health care in these patients but is often un-diagnosed or inadequately treated in primary care, where most care for these patients is provided. We developed a brief intervention, delivered by ‘liaison health workers’ (LHWs), to address psychosocial needs in the context of an integrated approach to physical and mental health. We report a qualitative study in which we characterize the intervention through the experience of the patients receiving it and examine how it was incorporated into primary care.
Qualitative study using patient and practice staff informants. We audio-recorded interviews with 29 patients offered the intervention (three had declined it or withdrawn) and 13 practice staff (GPs, nurses and administrators). Analysis used a constant comparative approach.
Most patients were enthusiastic about the LHWs, describing the intervention as mobilizing their motivation for self-management. By contrast with other practitioners, patients experienced the LHWs as addressing their needs holistically, being guided by patient needs rather than professional agendas, forming individual relationships with patients and investing in patients and their capacity to change. Practices accommodated and accepted the LHWs, but positioned them as peripheral to and separate from the priority of physical care.
Despite being a short-term intervention, patients described it as having enduring motivational benefits. The elements of the intervention that patients described map onto the key features of motivating interventions described by Self-Determination Theory. We suggest that the LHWs motivated patients to self-management by: (i) respecting patients’ competence to decide on needs and priorities; (ii) forming relationships with patients as individuals; and (iii) fostering patients’ sense of autonomy. While truly integrated primary care for patients with long-term conditions such as COPD remains elusive, existing practice staff might adopt elements of the LHWs’ approach to enhance motivational change in patients with long-term conditions such as COPD.
Electronic supplementary material
The online version of this article (doi:10.1186/1471-2296-15-164) contains supplementary material, which is available to authorized users.
Primary care; Long-term conditions; Qualitative research; Motivational change; Psychosocial intervention
This review considers key areas in primary care regarding the diagnosis of dementia. Issues surrounding assessment, policy and incentives are considered. In addition, the relevance of non-medication approaches for dementia in primary care, which aim to enhance or maintain quality of life by maximising psychological and social function in the context of existing disabilities, is deliberated. Finally, key issues about primary care medication management are considered, and relevant therapeutic strategies with recommendation for a collaborative approach that improve outcomes by linking primary and secondary healthcare services – including general practice and pharmacy – with social care needs are weighed up. A key aspect of such a collaborative approach is to support informal carers in optimising medication.
dementia; diagnosis; medication; primary care; psychosocial
Collaborative care is an effective treatment for the management of depression but evidence on its cost-effectiveness in the UK is lacking.
To assess the cost-effectiveness of collaborative care in a UK primary care setting.
An economic evaluation alongside a multi-centre cluster randomised controlled trial comparing collaborative care with usual primary care for adults with depression (n = 581). Costs, quality-adjusted life-years (QALYs), and incremental cost-effectiveness ratios (ICER) were calculated over a 12-month follow-up, from the perspective of the UK National Health Service and Personal Social Services (i.e. Third Party Payer). Sensitivity analyses are reported, and uncertainty is presented using the cost-effectiveness acceptability curve (CEAC) and the cost-effectiveness plane.
The collaborative care intervention had a mean cost of £272.50 per participant. Health and social care service use, excluding collaborative care, indicated a similar profile of resource use between collaborative care and usual care participants. Collaborative care offered a mean incremental gain of 0.02 (95% CI: –0.02, 0.06) quality-adjusted life-years over 12 months, at a mean incremental cost of £270.72 (95% CI: –202.98, 886.04), and resulted in an estimated mean cost per QALY of £14,248. Where costs associated with informal care are considered in sensitivity analyses collaborative care is expected to be less costly and more effective, thereby dominating treatment as usual.
Collaborative care offers health gains at a relatively low cost, and is cost-effective compared with usual care against a decision-maker willingness to pay threshold of £20,000 per QALY gained. Results here support the commissioning of collaborative care in a UK primary care setting.
Psychological therapy is effective for symptoms of mental distress, but many groups with high levels of mental distress face significant barriers in terms of access to care, as current interventions may not be sensitive to their needs or their understanding of mental health. There is a need to develop forms of psychological therapy that are acceptable to these groups, feasible to deliver in routine settings, and clinically and cost effective.
We developed a culturally sensitive wellbeing intervention with individual, group and sign-posting elements, and tested its feasibility and acceptability for patients from ethnic minorities and older people in an exploratory randomised trial.
We recruited 57 patients (57% of our target) from 4 disadvantaged localities in the NW of England. The results of the exploratory trial suggest that the group receiving the wellbeing interventions improved compared to the group receiving usual care. For elders, the largest effects were on CORE-OM and PHQ-9. For ethnic minority patients, the largest effect was on PHQ-9. Qualitative data suggested that patients found the intervention acceptable, both in terms of content and delivery.
This exploratory trial provides some evidence of the efficacy and acceptability of a wellbeing intervention for older and ethnic minority groups experiencing anxiety and depression, although challenges in recruitment and engagement remain. Evidence from our exploratory study of wellbeing interventions should inform new substantive trial designs.
Current controlled trials ISRCTN68572159
Collaborative care (CC) is an organisational framework which facilitates the delivery of a mental health intervention to patients by case managers in collaboration with more senior health professionals (supervisors and GPs), and is effective for the management of depression in primary care. However, there remains limited evidence on how to successfully implement this collaborative approach in UK primary care. This study aimed to explore to what extent CC impacts on professional working relationships, and if CC for depression could be implemented as routine in the primary care setting.
This qualitative study explored perspectives of the 6 case managers (CMs), 5 supervisors (trial research team members) and 15 general practitioners (GPs) from practices participating in a randomised controlled trial of CC for depression. Interviews were transcribed verbatim and data was analysed using a two-step approach using an initial thematic analysis, and a secondary analysis using the Normalisation Process Theory concepts of coherence, cognitive participation, collective action and reflexive monitoring with respect to the implementation of CC in primary care.
Supervisors and CMs demonstrated coherence in their understanding of CC, and consequently reported good levels of cognitive participation and collective action regarding delivering and supervising the intervention. GPs interviewed showed limited understanding of the CC framework, and reported limited collaboration with CMs: barriers to collaboration were identified. All participants identified the potential or experienced benefits of a collaborative approach to depression management and were able to discuss ways in which collaboration can be facilitated.
Primary care professionals in this study valued the potential for collaboration, but GPs’ understanding of CC and organisational barriers hindered opportunities for communication. Further work is needed to address these organisational barriers in order to facilitate collaboration around individual patients with depression, including shared IT systems, facilitating opportunities for informal discussion and building in formal collaboration into the CC framework.
The purpose of the study was to improve the quality of primary mental healthcare in underserved communities through involvement with the wider primary care team members and local community agencies.
We developed training intended for all GP practice staff which included elements of knowledge transfer, systems review and active linking. Seven GP Practices in four localities (North West England, UK) took part in the training. Qualitative evaluation was conducted using thirteen semi-structured interviews and two focus groups in six of the participating practices; analysis used principles of Framework Analysis.
Staff who had engaged with the training programme reported increased awareness, recognition and respect for the needs of patients from under-served communities. We received reports of changes in style and content of interactions, particularly amongst receptionists, and evidence of system change. In addition, the training program increased awareness of – and encouraged signposting to - community agencies within the practice locality.
This study demonstrates how engaging with practices and delivering training in a changing health care system might best be attempted. The importance of engaging with community agencies is clear, as is the use of the AMP model as a template for further research.
Mental health; Underserved populations; Primary care
Good communication skills are integral to successful doctor–patient relationships. Communication may be verbal or non-verbal, and touch is a significant component, which has received little attention in the primary care literature. Touch may be procedural (part of a clinical task) or expressive (contact unrelated to a procedure/examination).
To explore GPs’ and patients’ experiences of using touch in consultations.
Design and setting
Qualitative study in urban and semi-rural areas of north-west England.
Participating GPs recruited registered patients with whom they felt they had an ongoing relationship. Data were collected by semi-structured interviews and subjected to constant comparative qualitative analysis.
All participants described the importance of verbal and non-verbal communication in developing relationships. Expressive touch was suggested to improve communication quality by most GPs and all patients. GPs reported a lower threshold for using touch with older patients or those who were bereaved, and with patients of the same sex as themselves. All patient responders felt touch on the hand or forearm was appropriate. GPs described limits to using touch, with some responders rarely using anything other than procedural touch. In contrast, most patient responders believed expressive touch was acceptable, especially in situations of distress. All GP responders feared misinterpretation in their use of touch, but patients were keen that these concerns should not prevent doctors using expressive touch in consultations.
Expressive touch improves interactions between GPs and patients. Increased educational emphasis on the conscious use of expressive touch would enhance clinical communication and, hence, perhaps patient wellbeing and care.
communication skills; consultations; non-verbal communication; primary health care; qualitative research; touch
The NICE guideline for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) emphasises the need for an early diagnosis in primary care with management tailored to patient needs. However, GPs can be reluctant to make a diagnosis and are unsure how to manage people with the condition.
A meta synthesis of published qualitative studies was conducted, producing a multi-perspective description of barriers to the diagnosis and management of CFS/ME, and the ways that some health professionals have been able to overcome them. Analysis provided second-order interpretation of the original findings and developed third-order constructs to provide recommendations for the medical curriculum.
Twenty one qualitative studies were identified. The literature shows that for over 20 years health professionals have reported a limited understanding of CFS/ME. Working within the framework of the biomedical model has also led some GPs to be sceptical about the existence of the condition. GPs who provide a diagnosis tend to have a broader, multifactorial, model of the condition and more positive attitudes towards CFS/ME. These GPs collaborate with patients to reach agreement on symptom management, and use their therapeutic skills to promote self care.
In order to address barriers to the diagnosis and management of CFS/ME in primary care, the limitations of the biomedical model needs to be recognised. A more flexible bio-psychosocial approach is recommended where medical school training aims to equip practitioners with the skills needed to understand, support and manage patients and provide a pathway to refer for specialist input.
Chronic fatigue syndrome/ME; Barriers and facilitators; Management and diagnosis; Qualitative research; Primary health care
General practice receptionists fulfil an essential role in UK primary care, shaping patient access to health professionals. They are often portrayed as powerful ‘gatekeepers’. Existing literature and management initiatives advocate more training to improve their performance and, consequently, the patient experience.
To explore the complexity of the role of general practice receptionists by considering the wider practice context in which they work.
Design and setting
Ethnographic observation in seven urban general practices in the north-west of England.
Seven researchers conducted 200 hours of ethnographic observation, predominantly in the reception areas of each practice. Forty-five receptionists were involved in the study and were asked about their work as they carried out their activities. Observational notes were taken. Analysis involved ascribing codes to incidents considered relevant to the role and organising these into related clusters.
Receptionists were faced with the difficult task of prioritising patients, despite having little time, information, and training. They felt responsible for protecting those patients who were most vulnerable, however this was sometimes made difficult by protocols set by the GPs and by patients trying to ‘play’ the system.
Framing the receptionist–patient encounter as one between the ‘powerful’ and the ‘vulnerable’ gets in the way of fully understanding the complex tasks receptionists perform and the contradictions that are inherent in their role. Calls for more training, without reflective attention to practice dynamics, risk failing to address systemic problems, portraying them instead as individual failings.
ethnography; health services accessibility; primary care; qualitative research; receptionists, medical; role
UK health policy aims to reduce the use of unscheduled care, by increasing proactive and preventative management of patients with long-term conditions in primary care.
The study explored healthcare professionals’ understanding of why patients with long-term conditions use unscheduled care, and the healthcare professionals’ understanding of their role in relation to reducing the use of unscheduled care.
Design and setting
Qualitative study interviewing different types of healthcare professionals providing primary care or unscheduled care services in northwest England.
Semi-structured interviews were conducted with 29 healthcare professionals (six GPs; five out-of-hours GPs; four emergency department doctors; two practice nurses; three specialist nurses; two district nurses; seven active case managers). Data were analysed using framework analysis.
Healthcare professionals viewed the use of unscheduled care as a necessary component of care for patients with long-term conditions. Those whose roles involved working to targets to reduce the use of unscheduled care described a tension between this and delivering optimum patient care. Three approaches to reducing unscheduled care were described: optimising the system; negotiating the system; and optimising the patient.
Current policy to reduce the use of unscheduled care does not take account of the perceptions of the healthcare professionals who are expected to implement them. Lipsky’s theory of street-level bureaucrats provides a framework to understand how healthcare professionals respond to imposed policies. Healthcare professionals did not see the use of unscheduled care as a problem and there was limited commitment to the policy targets. Therefore, policy should aim for whole-system change rather than reliance on individual healthcare professionals to make changes in their practice.
general practice; healthcare systems; out-of-hours medical care; policy; primary health care
Improved prevention and management of vascular disease is a global priority. Non-health care professionals (such as, ‘lay health workers’ and ‘peer support workers’) are increasingly being used to offer telephone support alongside that offered by conventional services, to reach disadvantaged populations and to provide more efficient delivery of care. However, questions remain over the impact of such interventions, particularly on a wider range of vascular related conditions (such as, chronic kidney disease), and it is unclear how different types of telephone support impact on outcome. This study assessed the evidence on the effectiveness and cost-effectiveness of telephone self-management interventions led by ‘lay health workers’ and ‘peer support workers’ for patients with vascular disease and long-term conditions associated with vascular disease.
Systematic review of randomised controlled trials. Three electronic databases were searched. Two authors independently extracted data according to the Cochrane risk of bias tool. Random effects meta-analysis was used to pool outcome measures.
Ten studies were included, primarily based in community settings in the United States; with participants who had diabetes; and used ‘peer support workers’ that shared characteristics with patients. The included studies were generally rated at risk of bias, as many methodological criteria were rated as ‘unclear’ because of a lack of information.
Overall, peer telephone support was associated with small but significant improvements in self-management behaviour (SMD = 0.19, 95% CI 0.05 to 0.33, I2 = 20.4%) and significant reductions in HbA1c level (SMD = -0.26, 95% CI −0.41 to −0.11, I2 = 47.6%). There was no significant effect on mental health quality of life (SMD = 0.03, 95% CI −0.12 to 0.18, I2 = 0%). Data on health care utilisation were very limited and no studies reported cost effectiveness analyses.
Positive effects were found for telephone self-management interventions via ‘lay workers’ and ‘peer support workers’ for patients on diabetes control and self-management outcomes, but the overall evidence base was limited in scope and quality. Well designed trials assessing non-healthcare professional delivered telephone support for the prevention and management of vascular disease are needed to identify the content of effective components on health outcomes, and to assess cost effectiveness, to determine if such interventions are potentially useful alternatives to professionally delivered care.
Self-management support; Chronic care; Non-healthcare professional; Peer; Lay; Telephone; Vascular disease; Chronic kidney disease; Prevention; Management; Patients; Social disadvantage; Health services research; Randomised controlled trial; Review; Meta-analysis
Estimates of the prevalence of irritable bowel syndrome (IBS) vary widely, and a large proportion of patients report having consulted their general practitioner (GP). In patients with new onset gastrointestinal symptoms in primary care it might be possible to predict those at risk of persistent symptoms. However, one of the difficulties is identifying patients within primary care. GPs use a variety of Read Codes to describe patients presenting with IBS. Furthermore, in a qualitative study, exploring GPs’ attitudes and approaches to defining patients with IBS, GPs appeared reluctant to add the IBS Read Code to the patient record until more serious conditions were ruled out. Consequently, symptom codes such as 'abdominal pain’, 'diarrhoea’ or 'constipation’ are used. The aim of the current study was to investigate the prevalence of recorded consultations for IBS and to explore the symptom profile of patients with IBS using data from the Salford Integrated Record (SIR).
This was a database study using the SIR, a local patient sharing record system integrating primary, community and secondary care information. Records were obtained for a cohort of patients with gastrointestinal disorders from January 2002 to December 2011. Prevalence rates, symptom recording, medication prescribing and referral patterns were compared for three patient groups (IBS, abdominal pain (AP) and Inflammatory Bowel Disease (IBD)).
The prevalence of IBS (age standardised rate: 616 per year per 100,000 population) was much lower than expected compared with that reported in the literature. The majority of patients (69%) had no gastrointestinal symptoms recorded in the year prior to their IBS. However a proportion of these (22%) were likely to have been prescribed NICE guideline recommended medications for IBS in that year. The findings for AP and IBD were similar.
Using Read Codes to identify patients with IBS may lead to a large underestimate of the community prevalence. The IBS diagnostic Read Code was rarely applied in practice. There are similarities with many other medically unexplained symptoms which are typically difficult to diagnose in clinical practice.
Irritable bowel syndrome; Read Codes; Functional gastrointestinal disorders; Medically unexplained symptoms; Primary care; General practitioners
Psoriasis is a chronic, inflammatory skin disease affecting approximately 2% of the UK population and is currently incurable. It produces profound effects on psychological wellbeing and social functioning and has significant associated co-morbidities. The majority of patients with psoriasis are managed in primary care, however in-depth patient and GP perspectives about psoriasis management in this setting are absent from the literature. This article reports an in-depth study which compares and contrasts the perspectives of people with psoriasis and of GPs on the challenges of managing psoriasis in primary care.
In-depth, qualitative semi-structured interviews were conducted with a diverse sample of 29 people with psoriasis and 14 GPs. Interviews were coded using principles of Framework Analysis to enable a comparison of patient and practitioner perspectives on key issues and concepts arising from the data.
Patients perceived GPs to be lacking in confidence in the assessment and management of psoriasis and both groups felt lacking in knowledge and understanding about the condition. While practitioners recognised that psoriasis has physical, emotional and social impact, they assumed patients had expertise in the condition and may not address these issues in consultations. This resulted in patient dissatisfaction and sub-optimal assessment of severity and impact of psoriasis by GPs. Patients and GPs recognised that psoriasis was not being managed as a complex long-term condition, however this appeared less problematic for GPs than for patients who desired a shared management with their GP incorporating appropriate monitoring and timely reviews.
The research suggests that current routine practice for psoriasis management in primary care is mismatched with the expressed needs of patients. To address these needs, psoriasis must be recognised as a complex long-term condition involving exacting physical, psychological and social demands, co-morbidity and the development of new treatments.
General practitioners need to improve both their knowledge and skills in the assessment and management of psoriasis. This in turn will facilitate management of the condition in partnership with patients. Commissioning multi-disciplinary services, which focus on long-term impacts on wellbeing and quality of life, might address current deficits in care.
Psoriasis; Qualitative research; Primary health care; Patient perspectives; Self-care; General practitioners; NICE guidelines
Unscheduled care (UC) refers to non-routine face-to-face care, such as accident and emergency care, out-of-hours care, or walk-in centres. Current health service policy aims to reduce its use. Unscheduled care is common in people with long-term conditions such as diabetes, asthma, chronic obstructive pulmonary disease and coronary heart disease. By reviewing qualitative research literature, we aimed to understand the breadth of psychosocial and other influences on UC use in people with long-term conditions. Few qualitative papers specifically address UC in patients in these disease groups. Therefore, our literature search also included qualitative research that explored factors potentially relevant to UC use, including attitudes to healthcare use in general. By searching Medline, Embase, Psycinfo and Cinahl from inception to 2011, we identified 42 papers, published since 1984, describing relevant original research and took a meta-ethnographic approach in reviewing them. The review was conducted between Spring 2009 and April 2011, with a further search in December 2011. Most papers reported on asthma (n = 13) or on multiple or unspecified conditions (n = 12). The most common methods reported were interviews (n = 33) and focus groups (n = 13), and analyses were generally descriptive. Theoretical and ethical background was rarely explicit, but the implicit starting point was generally the ‘problem’ of UC, and health-care, use in general, decontextualised from the lives of the patients using it. Patients’ use of UC emerged as understandable, rational responses to pressing clinical need in situations in which patients thought it the only option. This belief reflected the value that they had learned to attach to UC versus routine care through previous experiences. For socially or economically marginalised patients, UC offered access to clinical or social care that was otherwise unavailable to them.
decision-making; emergency care; long-term illness; primary care; qualitative research; use of health-care
Mental-physical multi-morbidities pose challenges for primary care services that traditionally focus on single diseases. Collaborative care models encourage inter-professional working to deliver better care for patients with multiple chronic conditions, such as depression and long-term physical health problems. Successive trials from the United States have shown that collaborative care effectively improves depression outcomes, even in people with long-term conditions (LTCs), but little is known about how to implement collaborative care in the United Kingdom. The aim of the study was to explore the extent to which collaborative care was implemented in a naturalistic National Health Service setting.
A naturalistic pilot study of collaborative care was undertaken in North West England. Primary care mental health professionals from IAPT (Increasing Access to Psychological Therapies) services and general practice nurses were trained to collaboratively identify and manage patients with co-morbid depression and long-term conditions. Qualitative interviews were performed with health professionals at the beginning and end of the pilot phase. Normalization Process Theory guided analysis.
Health professionals adopted limited elements of the collaborative care model in practice. Although benefits of co-location in primary care practices were reported, including reduced stigma of accessing mental health treatment and greater ease of disposal for identified patients, existing norms around the division of mental and physical health work in primary care were maintained, limiting integration of the mental health practitioners into the practice setting. Neither the mental health practitioners nor the practice nurses perceived benefits to joint management of patients.
Established divisions between mental and physical health may pose particular challenges for multi-morbidity service delivery models such as collaborative care. Future work should explore patient perspectives about whether greater inter-professional working enhances experiences of care. The study demonstrates that research into implementation of novel treatments must consider how the introduction of innovation can be balanced with the need for integration into existing practice.
Depression; Mental health; Co-morbidity; Implementation; Qualitative; Collaborative care; Chronic care; Primary care
Long-term conditions (LTCs) are increasingly important determinants of quality of life and healthcare costs in populations worldwide. The Chronic Care Model and the NHS and Social Care Long Term Conditions Model highlight the use of consultations where patients are invited to attend a consultation with a primary care clinician (practice nurse or GP) to complete a review of the management of the LTC. We report a qualitative study in which we focus on the ways in which QOF (Quality and Outcomes Framework) shapes routine review consultations, and highlight the tensions exposed between patient-centred consulting and QOF-informed LTC management.
A longitudinal qualitative study. We audio-recorded consultations of primary care practitioners with patients with LTCs. We then interviewed both patients and practitioners using tape-assisted recall. Patient participants were followed for three months during which the research team made weekly contact and invited them to complete weekly logs about their health service use. A second interview at three months was conducted with patients. Analysis of the data sets used an integrative framework approach.
Practitioners view consultations as a means of ‘surveillance’ of patients. Patients present themselves, often passively, to the practitioner for scrutiny, but leave the consultation with unmet biomedical, informational and emotional needs. Patients perceived review consultations as insignificant and irrelevant to the daily management of their LTC and future healthcare needs. Two deviant cases, where the requirements of the ‘review’ were subsumed to meet the patient’s needs, focused on cancer and bereavement.
Routine review consultations in primary care focus on the biomedical agenda set by QOF where the practitioner is the expert, and the patient agenda unheard. Review consultations shape patients’ expectations of future care and socialize patients into becoming passive subjects of ‘surveillance’. Patient needs outside the narrow protocol of the review are made invisible by the process of review except in extreme cases such as anticipating death and bereavement. We suggest how these constraints might be overcome.
Primary care; Long-term conditions; Quality and Outcomes Framework (QOF); Consultations; Longitudinal qualitative research
Patient empowerment is viewed by policy makers and health care practitioners as a mechanism to help patients with long-term conditions better manage their health and achieve better outcomes. However, assessing the role of empowerment is dependent on effective measures of empowerment. Although many measures of empowerment exist, no measure has been developed specifically for patients with long-term conditions in the primary care setting. This study presents preliminary data on the development and validation of such a measure.
We conducted two empirical studies. Study one was an interview study to understand empowerment from the perspective of patients living with long-term conditions. Qualitative analysis identified dimensions of empowerment, and the qualitative data were used to generate items relating to these dimensions. Study two was a cross-sectional postal study involving patients with different types of long-term conditions recruited from general practices. The survey was conducted to test and validate our new measure of empowerment. Factor analysis and regression were performed to test scale structure, internal consistency and construct validity.
Sixteen predominately elderly patients with different types of long-term conditions described empowerment in terms of 5 dimensions (identity, knowledge and understanding, personal control, personal decision-making, and enabling other patients). One hundred and ninety seven survey responses were received from mainly older white females, with relatively low levels of formal education, with the majority retired from paid work. Almost half of the sample reported cardiovascular, joint or diabetes long-term conditions. Factor analysis identified a three factor solution (positive attitude and sense of control, knowledge and confidence in decision making and enabling others), although the structure lacked clarity. A total empowerment score across all items showed acceptable levels of internal consistency and relationships with other measures were generally supportive of its construct validity.
Initial analyses suggest that the new empowerment measure meets basic psychometric criteria. Reasons concerning the failure to confirm the hypothesized factor structure are discussed alongside further developments of the scale.
Patient empowerment; Long-term conditions; Primary care; Patients’ perspectives; Semi-structured interviews; Measurement; Scale development; Psychometrics; Health outcomes
Chronic fatigue syndrome/myalgic encephalitis (CFS/ME) is rarely diagnosed in South Asia (SA), although the symptoms of this condition are seen in the population. Lessons from UK based South Asian, Black and Minority Ethnic (BME) communities may be of value in identifying barriers to diagnosis of CFS/ME in SA.
To explore why CFS/ME may not be commonly diagnosed in SA.
Settings and Design:
A secondary analysis of qualitative data on the diagnosis and management of CFS/ME in BME people of predominantly South Asian origin in the UK using 27 semi-structured qualitative interviews with people with CFE/ME, carers, general practitioners (GPs), and community leaders.
CFS/ME is seen among the BME communities in the UK. People from BME communities in the UK can present to healthcare practitioners with vague physical complaints and they can hold a biomedical model of illness. Patients found it useful to have a label of CFS/ME although some GPs felt it to be a negative label. Access to healthcare can be limited by GPs reluctance to diagnose CFS/ME, their lack of knowledge and patients negative experiences. Cultural aspects among BME patients in the UK also act as a barrier to the diagnosis of CFS/ME.
Cultural values and practices influence the diagnosis of CFS/ME in BME communities. The variations in the perceptions around CFS/ME among patients, carers, and health professionals may pose challenges in diagnosing CFS/ME in SA as well. Raising awareness of CFS/ME would improve the diagnosis and management of patients with CFS/ME in SA.
Access to care; Asian/Black and ethnic minority; chronic fatigue syndrome/myalgic encephalitis; primary care
The estimated prevalence of irritable bowel syndrome (IBS) is 10%. Up to one third of patients develop chronic symptoms, which impact on everyday functioning and psychological wellbeing. Guidelines suggest an increased role for primary care in the management of patients with IBS, and referral for psychological interventions. Literature reports dissatisfaction and frustration experienced by both patients with IBS and healthcare professionals. The aim of this study was to explore the perspectives of general practitioners (GPs) in relation to the diagnosis and management of IBS and their views on the potential use of a risk assessment tool to aid management decisions for patients with IBS in primary care.
This was a qualitative study using face-to-face semi-structured interviews with GPs in North West England. Interviews were fully transcribed and data analyzed using constant comparison across interviews. Tensions between GP accounts and the NICE guideline for the management of IBS were highlighted.
GPs described IBS as a diagnosis of exclusion and the process as tentative and iterative, with delay in adding a Read code to the patient record until they were confident of the diagnosis. Whilst GPs accepted there was a link between IBS and psychological symptoms they suggested that the majority of patients could be managed within primary care without referral for psychological interventions, in conflict with the NICE guideline. They did not feel that a risk assessment tool for patients with IBS would be helpful.
This study highlights the tensions between evidence recognizing the need to identify patients whose symptoms may become chronic and offer pro-active care, including referral for psychological therapies, and the perspectives of GPs managing patients in every-day clinical practice. The reluctance of GPs to refer patients for evidence-based psychological treatments may have implications for commissioning services and patient care.
Irritable Bowel Syndrome; Functional Gastrointestinal Disorders; Medically Unexplained Symptoms; NICE Guideline; Primary Care; General Practitioners