Long-term Conditions In Primary Care Research Articles

1992 Long-term condition reviews in General Practice: The experiences of people with Dementia and their informal carers

Abstract “I would imagine it needed a review…” A Qualitative Study Exploring the Experiences of People with Dementia and their Informal Carers of Long-term Condition Reviews in Primary Care Introduction Multimorbidity is common for people with dementia (PWD) and is associated with increased healthcare utilisation and poorer outcomes. Part of the management of long-term conditions (LTCs) occurs through annual LTC reviews conducted in primary care. Little is known about the experiences or needs of people with dementia and informal carers in regard to LTC reviews. Aim To explore the experiences of PWD and their informal carers of the review and management of LTCs in primary care. Method Qualitative research study, protocol informed by discussion with people with lived experience as an informal carer. Institutional ethical approval (ref ETH2122-1035, University of East Anglia) was granted 25/3/2022. Semi-structured interviews were conducted with PWD and informal carers recruited through Join Dementia Research and local (to Norfolk, UK) charities. Thematic analysis was undertaken with reference to Braun and Clarke (2006). Results 16 participants were interviewed: two PWD, 10 informal carers and two informal care/PWD dyads. Our findings fall into four main themes: 1) What matters to people; medication optimisation and holistic care 2) What is a review; the diversity of experiences 3) The importance of communication and 4) Preference for shared decision making. Conclusion Consideration should be given to ensuring patients and carers are aware when a LTC review will take place and providing an opportunity to be involved, thus allowing shared decision making and patient centred care. Further research into the clinician experience and their views on patients’ needs and how to meet them is required to inform how LTC reviews for people with dementia can be optimised.

Promoting physical activity and physical function in people with long-term conditions in primary care: the Function First realist synthesis with co-design

BackgroundAs people age and accumulate long-term conditions, their physical activity and physical function declines, resulting in disability and loss of independence. Primary care is well placed to empower individuals and communities to reduce this decline; however, the best approach is uncertain.ObjectivesTo develop a programme theory to explain the mechanisms through which interventions improve physical activity and physical function in people with long-term conditions in different primary care contexts, and to co-design a prototype intervention.Data sourcesSystematic literature searches of relevant databases with forwards and backwards citation tracking, grey literature searches and further purposive searches were conducted. Qualitative data were collected through workshops and interviews.DesignRealist evidence synthesis and co-design for primary care service innovation.SettingPrimary care in Wales and England.ParticipantsStakeholders included people with long-term conditions, primary care professionals, people working in relevant community roles and researchers.MethodsThe realist evidence synthesis combined evidence from varied sources of literature with the views, experiences and ideas of stakeholders. The resulting context, mechanism and outcome statements informed three co-design workshops and a knowledge mobilisation workshop for primary care service innovation.ResultsFive context, mechanism and outcome statements were developed. (1) Improving physical activity and function is not prioritised in primary care (context). If the practice team culture is aligned to the elements of physical literacy (mechanism), then physical activity promotion will become routine and embedded in usual care (outcome). (2) Physical activity promotion is inconsistent and unco-ordinated (context). If specific resources are allocated to physical activity promotion (in combination with a supportive practice culture) (mechanism), then this will improve opportunities to change behaviour (outcome). (3) People with long-term conditions have varying levels of physical function and physical activity, varying attitudes to physical activity and differing access to local resources that enable physical activity (context). If physical activity promotion is adapted to individual needs, preferences and local resources (mechanism), then this will facilitate a sustained improvement in physical activity (outcome). (4) Many primary care practice staff lack the knowledge and confidence to promote physical activity (context). If staff develop an improved sense of capability through education and training (mechanism), then they will increase their engagement with physical activity promotion (outcome). (5) If a programme is credible with patients and professionals (context), then trust and confidence in the programme will develop (mechanism) and more patients and professionals will engage with the programme (outcome). A prototype multicomponent intervention was developed. This consisted of resources to nurture a culture of physical literacy, materials to develop the role of a credible professional who can promote physical activity using a directory of local opportunities and resources to assist with individual behaviour change.LimitationsRealist synthesis and co-design is about what works in which contexts, so these resources and practice implications will need to be modified for different primary care contexts.ConclusionsWe developed a programme theory to explain how physical activity could be promoted in primary care in people with long-term conditions, which informed a prototype intervention.Future workA future research programme could further develop the prototype multicomponent intervention and assess its acceptability in practice alongside existing schemes before it is tested in a feasibility study to inform a future randomised controlled trial.Study registrationThis study is registered as PROSPERO CRD42018103027.FundingThis project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full inHealth Services and Delivery Research; Vol. 9, No. 16. See the NIHR Journals Library website for further project information.

People with weight-related long-term conditions want support from GPs: A qualitative interview study.

Two-thirds of UK adults do not have an up-to-date weight record in primary care. Some studies suggest that doctors do not raise the topic of weight management for fear of causing embarrassment or offence, or are doubtful whether people will make changes. However, for people with weight-related long-term conditions, conversations with general practitioners (GPs) can be crucial. Our study explores how people with long-term conditions associated with overweight recall and interpret conversations about weight in British primary care. An experienced qualitative researcher interviewed 41 people aged <42years with long-term conditions associated with overweight. A maximum variation sample was sought, and transcribed interviews were analysed thematically. We revealed that patients with weight-related long-term conditions have different experiences and expectations about the role of GPs in supporting weight management. If a GP did not raise weight management in the context of the long-term condition patients formed the impression that their overweight was not seen as "doctorable" that is, as an appropriate topic for the consultation, rather than a personal or "lifestyle" concern. This was explained in multiple ways, which are captured in two themes; perceiving weight as "doctorable"; and weight doctoring in primary care. The findings highlight the need for increased attention on weight-related long-term conditions in primary care. Interventions from GPs would be welcome if conducted in a sensitive, non-judgmental manner and based on sound evidence about what works.

What methods are being used to create an evidence base on the use of laboratory tests to monitor long-term conditions in primary care? A scoping review.

BackgroundStudies have shown unwarranted variation in test ordering among GP practices and regions, which may lead to patient harm and increased health care costs. There is currently no robust evidence base to inform guidelines on monitoring long-term conditions.ObjectivesTo map the extent and nature of research that provides evidence on the use of laboratory tests to monitor long-term conditions in primary care, and to identify gaps in existing research.MethodsWe performed a scoping review—a relatively new approach for mapping research evidence across broad topics—using data abstraction forms and charting data according to a scoping framework. We searched CINAHL, EMBASE and MEDLINE to April 2019. We included studies that aimed to optimize the use of laboratory tests and determine costs, patient harm or variation related to testing in a primary care population with long-term conditions.ResultsNinety-four studies were included. Forty percent aimed to describe variation in test ordering and 36% to investigate test performance. Renal function tests (35%), HbA1c (23%) and lipids (17%) were the most studied laboratory tests. Most studies applied a cohort design using routinely collected health care data (49%). We found gaps in research on strategies to optimize test use to improve patient outcomes, optimal testing intervals and patient harms caused by over-testing.ConclusionsFuture research needs to address these gaps in evidence. High-level evidence is missing, i.e. randomized controlled trials comparing one monitoring strategy to another or quasi-experimental designs such as interrupted time series analysis if trials are not feasible.

Childhood long-term conditions in primary care: a qualitative study of practitioners' views.

Improving child health and wellbeing in England was the key focus of the Chief Medical Officer's Annual Report 2012, which recommended that all children with long-term conditions (LTCs) have a named GP responsible for their care. Little is known, however, about practitioners' views and experiences of supporting children with LTCs in primary care. To explore practitioners' views of supporting children with LTCs and their families in primary care. Qualitative interview study in primary care settings in South Yorkshire, England. Interviews explored practitioners' views and experiences of supporting children with asthma, cystic fibrosis, type 1 diabetes, and epilepsy. Interviews were audiotaped, transcribed verbatim, and analysed using the framework approach. Nineteen practitioners were interviewed: 10 GPs, five practice nurses, and four nurse practitioners. The GPs' clinical roles included prescribing and concurrent illness management; nurse practitioners held minor illness clinics; and practice nurses conduct asthma clinics and administer immunisations. GPs were coordinators of care and provided a holistic service to the family. GPs were often unsure of their role with children with LTCs, and did not feel they had overall responsibility for these patients. Confidence was dependent on experience; however, knowledge of GPs' own limits and accessing help were felt to be more important than knowledge of the condition. Primary care has a valuable role in the care of children with LTCs and their families. This study suggests that improving communication between services would clarify roles and help improve the confidence of primary care practitioners.

Improving recruitment to a study of telehealth management for long-term conditions in primary care: two embedded, randomised controlled trials of optimised patient information materials.

BackgroundPatient understanding of study information is fundamental to gaining informed consent to take part in a randomised controlled trial. In order to meet the requirements of research ethics committees, patient information materials can be long and need to communicate complex messages. There is concern that standard approaches to providing patient information may deter potential participants from taking part in trials. The Systematic Techniques for Assisting Recruitment to Trials (MRC-START) research programme aims to test interventions to improve trial recruitment. The aim of this study was to investigate the effect on recruitment of optimised patient information materials (with improved readability and ease of comprehension) compared with standard materials. The study was embedded within two primary care trials involving patients with long-term conditions.MethodsThe Healthlines Study involves two linked trials evaluating a telehealth intervention in patients with depression (Healthlines Depression) or raised cardiovascular disease risk (Healthlines CVD). We conducted two trials of a recruitment intervention, embedded within the Healthlines host trials. Patients identified as potentially eligible in each of the Healthlines trials were randomised to receive either the original patient information materials or optimised versions of these materials. Primary outcomes were the proportion of participants randomised (Healthlines Depression) and the proportion expressing interest in taking part (Healthlines CVD).ResultsIn Healthlines Depression (n = 1364), 6.3 % of patients receiving the optimised patient information materials were randomised into the study compared to 4.0 % in those receiving standard materials (OR = 1.63, 95 % CI = 1.00 to 2.67). In Healthlines CVD (n = 671) 24.0 % of those receiving optimised patient information materials responded positively to the invitation to participate, compared to 21.9 % in those receiving standard materials (OR = 1.12, 95 % CI = 0.78 to 1.61).ConclusionsEvidence from these two embedded trials suggests limited benefits of optimised patient information materials on recruitment rates, which may only be apparent in some patient populations, with no effects on other outcomes. Further embedded trials are needed to provide a more precise estimate of effect, and to explore further how effects vary by trial context, intervention, and patient population.Trial registrationCurrent Controlled Trials: Healthlines Depression (ISRCTN27508731) on 26 June 2012; and Healthlines CVD (ISRCTN14172341) on 5 July 2012Electronic supplementary materialThe online version of this article (doi:10.1186/s13063-015-0820-0) contains supplementary material, which is available to authorized users.

Management of depression in the British South Asian and British White patients with long-term conditions in primary care: A cross sectional study

Depression and pain dimensions in the assessment of healthrelated quality of life in older adults A.F. Allaz, C. Luthy, F. Herrmann, C. Ludwig, C. Cedraschi Division of General Medical Rehabilitation Beau-Sejour, SMIRG, University Hospital, Geneva, Switzerland, Division of Geriatric, University Hospitals Geneva, Switzerland, School of Health, University of Applied Sciences of Western Switzerland, Geneva, Switzerland

Improving the care of people with long-term conditions in primary care: protocol for the ENHANCE pilot trial.

BackgroundLong-term conditions (LTCs) are important determinants of quality of life and healthcare expenditure worldwide. Whilst multimorbidity is increasingly the norm in primary care, clinical guidelines and the delivery of care remain focused on single diseases, resulting in poorer clinical outcomes. Osteoarthritis, and anxiety and/or depression frequently co-occur with other LTCs, yet are seldom prioritized by the patient or clinician, resulting in higher levels of disability, poorer prognosis, and increased healthcare costs.ObjectiveTo examine the feasibility and acceptability of an integrated approach to LTC management, tackling the under-diagnosis and under-management of osteoarthritis-related pain and anxiety and/or depression in older adults with other LTCs in primary care.DesignThe ENHANCE study is a pilot stepped-wedge cluster randomized controlled trial to test the feasibility and acceptability of a nurse-led ENAHNCE LTC review consultation for identifying, assessing, and managing joint pain, and anxiety and/or depression in patients attending LTC reviews. Specific objectives (process evaluation and research outcomes) will be achieved through a theoretically informed mixed-methods approach using participant self-reported questionnaires, a medical record review, an ENHANCE EMIS template, qualitative interviews, and audio recordings of the ENHANCE LTC review.DiscussionSuccess of the pilot trial will be measured against the level of the primary care team engagement, assessment of training delivery, and degree of patient recruitment and retention. Patient satisfaction and treatment fidelity will also be explored.ISRCTN registry number: 12154418.

Measuring patient-perceived continuity of care for patients with long-term conditions in primary care.

BackgroundContinuity of care is widely acknowledged as important for patients with multi-morbidity but simple, service-orientated indices cannot capture the full impact of continuity in complex care delivery systems. The patient’s perspective is important to assess outcomes fully and this is challenging because generic measures of patient-perceived continuity are lacking. We investigate the Chao Perception of Continuity (Chao PC) scale to determine its suitability as a measure of continuity of care for patients with a long-term condition (stroke), and co-morbidity, in a primary care setting.MethodsDesign and Setting: A questionnaire study embedded in a prospective observational cohort study of outcomes for patients following acute stroke.Participants: 168 community dwelling patients (58% male) mean age 68 years a minimum one year post-stroke. Functional status: Barthel Index mean =16.Intervention: A 23-item questionnaire, the Chao Perception of Continuity (Chao PC) scale, sent by post to their place of residence or administered face to face as part of the final cohort study assessment.Results310 patients were invited to participate; 168 (54%) completed a questionnaire.All 23 questionnaire items were entered into a Principal Component Analysis. Emergent factors from the exploratory analysis were (1) inter-personal trust (relational continuity); (2) interpersonal knowledge and information (informational and relational continuity) and (3) the process of care (managerial continuity). The strongest of these was inter-personal trust.ConclusionThe context-specific items in the Chao PC scale are difficult for respondents to interpret in a United Kingdom Primary Care setting resulting in missing data and low response rates. The Chao-PC therefore cannot be recommended for wider application as a general measure of continuity of care without significant modification.Our findings reflect the acknowledged dimensions of continuity and support the concept of continuity of care as a multi-dimensional construct. We demonstrate the overlapping boundaries across the dimensions in the factor structure derived. Trust and interpersonal knowledge are clearly identified as valuable components of any patient-perceived measure of continuity of care.Electronic supplementary materialThe online version of this article (doi:10.1186/s12875-014-0191-8) contains supplementary material, which is available to authorized users.

The routine collection of patient-reported outcome measures (PROMs) for long-term conditions in primary care: a cohort survey

ObjectivesTo evaluate the feasibility of using patient-reported outcome measures (PROMs) for long-term conditions (LTCs) in primary care.DesignA cohort postal survey conducted from September 2010 to April 2012.SettingPrimary care practices (n=33)...

Challenges of nurse delivery of psychological interventions for long-term conditions in primary care: a qualitative exploration of the case of chronic fatigue syndrome/myalgic encephalitis.

BackgroundThe evidence base for a range of psychosocial and behavioural interventions in managing and supporting patients with long-term conditions (LTCs) is now well-established. With increasing numbers of such patients being managed in primary care, and a shortage of specialists in psychology and behavioural management to deliver interventions, therapeutic interventions are increasingly being delivered by general nurses with limited training in psychological interventions. It is unknown what issues this raises for the nurses or their patients. The purpose of the study was to examine the challenges faced by non-specialist nurses when delivering psychological interventions for an LTC (chronic fatigue syndrome/myalgic encephalomyelitis [CFS/ME]) within a primary care setting.MethodsA qualitative study nested within a randomised controlled trial [ISRCTN 74156610] explored the experiences and acceptability of two different psychological interventions (pragmatic rehabilitation and supportive listening) from the perspectives of nurses, their supervisors, and patients. Semi structured in-depth interviews were conducted with three nurse therapists, three supervisors, and 46 patients. An iterative approach was used to develop conceptual categories from the dataset.ResultsAnalyses identified four sets of challenges that were common to both interventions: (i) being a novice therapist, (ii) engaging patients in the therapeutic model, (iii) dealing with emotions, and (iv) the complexity of primary care. Each challenge had the potential to cause tension between therapist and patient. A number of strategies were developed by participants to manage the tensions.ConclusionsTensions existed for nurses when attempting to deliver psychological interventions for patients with CFS/ME in this primary care trial. Such tensions should be addressed before implementing psychological interventions within routine clinical practice. Similar tensions may be found for other LTCs. Our findings have implications for developing therapeutic alliances and highlight the need for regular supervision.

The Quality and Outcomes Framework and self-management dialogue in primary care consultations: a qualitative study.

Two key elements to improve the quality of care for people with long-term conditions in primary care are improved clinical information systems to support delivery of evidence-based care, and enhanced self-management support. Although both elements are viewed as necessary, their interaction is not well understood. To explore the use of computer-based 'disease management' templates and their relevance to self-management dialogue within clinical encounters. Qualitative study of general practices located in three primary care trusts in the north of England. A qualitative mixed methods study was conducted that included comparative analysis of (1) observations of general practice consultations (n = 86); and (2) interviews with health professionals in general practice (n = 17). The analysis suggested that use of the computer templates reinforced a checklist approach to consultations, which included professionals working through several self-management topics framed as discrete behaviours. As a consequence, conversation tended to become focused on the maintenance of the professional-patient relationship at the expense of expansion in self-management dialogue. The computer templates also shaped how patient-initiated self-management dialogue was managed when it arose, with a shift towards discussion around medical agendas. In order to enhance the management of long-term conditions in primary care, the design and implementation of clinical information systems to improve evidence-based care need to take into account their potential impact on supporting self-management.

A qualitative study of the views of patients with long-term conditions on family doctors in Hong Kong

BackgroundPrimary care based management of long-term conditions (LTCs) is high on the international healthcare agenda, including the Asia-Pacific region. Hong Kong has a 'mixed economy' healthcare system with both public and private sectors with a range of types of primary care doctors. Recent Hong Kong Government policy aims to enhance the management of LTCs in primary care possibly based on a 'family doctor' model. Patients' views on this are not well documented and the aim of the present study was to explore the views of patients with LTCs on family doctors in Hong Kong.MethodsThe views of patients (with a variety of LTCs) on family doctors in Hong Kong were explored. Two groups of participants were interviewed; a) those who considered themselves as having a family doctor, b) those who considered themselves as not having a family doctor (either with a regular primary care doctor but not a family doctor or with no regular primary care doctor). In-depth individual semi-structured interviews were carried out with 28 participants (10 with a family doctor, 10 with a regular doctor, and 8 with no regular doctor) and analysed using the constant comparative method.ResultsParticipants who did not have a family doctor were familiar with the concept but regarded it as a 'luxury item' for the rich within the private healthcare system. Those with a regular family doctor (all private) regarded having one as important to their and their family's health. Participants in both groups felt that as well as the more usual family medicine specialist or general practitioner, traditional Chinese medicine practitioners also had the potential to be family doctors. However most participants attended the public healthcare system for management of their LTCs whether they had a family doctor or not. Cost, perceived need, quality, trust, and choice were all barriers to the use of family doctors for the management of their LTCs.ConclusionsImportant barriers to the adoption of a 'family doctor' model of management of LTCs exist in Hong Kong. Effective policy implementation seems unlikely unless these complex barriers are addressed.

Bringing self-management into clinical view: a qualitative study of long-term condition management in primary care consultations

To understand social processes underpinning support for self-management of long-term conditions in primary care. Comparative analysis of observational and interview data concerning the management of long-term conditions in UK primary-care consultations. Analysis of recordings of primary care consultations (n = 86) was conducted in conjunction with analysis of semi-structured interviews with health professionals (n = 17) and patients (n = 12) living with a long-term condition. A key finding was the infrequency with which self-management topics became legitimate objects for discussion in consultations. Analysis suggested that the maintenance of self-other relations was a prime objective for both patients and professionals, and the introduction of self-management topics threatened this process. Technology and the division of labour among primary-care professionals reinforced this tension. In order for self-management support to become embedded and integrated into primary care, interventions concerning long-term condition management need to take into account this tension underpinning care.