'Falling through gaps': primary care patients' accounts of breakdowns in experienced continuity of care.

BACKGROUND: Experienced continuity is important for good quality primary care but may be challenging to achieve. Little is known about how discontinuities or gaps in care may arise, how they impact on patients' experiences and how best to understand them so that they can be avoided or managed. OBJECTIVES: Using the theoretical framework of candidacy, we aim to explore patients' experiences of discontinuities in care and to gain insight into how gaps come to be bridged and why they might remain unresolved. METHODS: A secondary analysis was undertaken of interview data from a large study into continuity in primary care, involving a diverse sample of 50 patients, recruited from 15 general practices, one walk-in centre and community settings in Leicestershire, UK. Analysis was conducted using a constant comparative approach. RESULTS: Experiences of gaps in care were common, arising from failures in communication and coordination of care. Although some gaps were easily bridged, many patients described 'falling through gaps' because of difficulties establishing their candidacy for ongoing care when gaps occurred. These patients commonly had complex, chronic conditions and multi-morbidity. Bridging gaps required resources; relationship continuity was a valuable resource for preventing and repairing gaps in care. When gaps were not bridged, distress and dysfunctional use of health services followed. CONCLUSION: This study demonstrates that some patients with complex chronic conditions and multi-morbidity may be unable to get the continuity they need and highlights the potential for relationship continuity to help prevent vulnerable patients falling through gaps in care.

Interpersonal continuity of care: a cross-sectional survey of primary care patients' preferences and their experiences.

BACKGROUND: Developments in primary care may make the provision of interpersonal continuity more difficult. AIM: To identify those patients who regard interpersonal continuity as important and determine what makes it difficult for them to obtain this. DESIGN OF STUDY: Cross sectional survey. SETTING: Twenty-two practices and a walk-in centre in West London and Leicestershire, UK. METHOD: Administration of a questionnaire on preferences for and experiences of interpersonal and informational continuity. Interpersonal continuity was defined in three questions: choosing a particular person; choosing someone known and trusted; and choosing someone who knows the patient and medical condition. RESULTS: One thousand four hundred and thirty-seven (46.5%) patients responded. Consulting someone known and trusted was important to 766 (62.6%) responders, although 105 (13.7%) of these reported that they had not experienced it at their last consultation. Seven hundred and eighty-eight (65.2%) responders regarded being able to consult a particular person as important, but 168 (21.3%) of these were unable to. Being in work and consulting for a new problem were associated with failing to obtain interpersonal continuity. Ethnic group was associated with failing to see someone with time to listen when this was preferred. CONCLUSION: In view of the response rate, which was particularly low among young males, some caution is required in applying the findings. Most patients experience the aspects of care important to them, although interpersonal continuity is important to many and certain groups find difficulty in obtaining it. Practices should have flexible appointment systems to account for the difficulties some patients have in negotiating for the type of care they want.

Do patients value continuity of care in general practice? An investigation using stated preference discrete choice experiments.

OBJECTIVES: To estimate the relative importance to patients of continuity of care compared with other aspects of a primary care consultation. METHODS: We carried out a discrete choice experiment in Leicestershire and London on a stratified random sample of 646 community dwelling adults taken from general practitioner (GP) registers, plus 20 interviews with Punjabi, Urdu and Gujarati speakers. The attributes examined were: the type of professional consulted, relational continuity, informational continuity and access. RESULTS: Individuals' values changed according to their reason for making a primary care consultation. If consulting for minor familiar symptoms, individuals would be prepared to trade off one extra day's wait to see a GP rather than a nurse, 0.9 days for relational continuity, and 1.6 days for informational continuity. If consulting for a new condition they were uncertain about, they would be prepared to trade off an additional wait of 3.5 days to see a GP rather than a nurse, 2.4 days for relational continuity and 3.9 days for informational continuity. For a routine check-up, an individual would be prepared to trade off an additional wait of 3.5 days to see a GP rather than a nurse, 4.2 days for relational continuity and 7.8 days for informational continuity. CONCLUSIONS: Respondents stated their preference to wait longer to see a familar medical practitioner who was well informed about their case when they had a problem causing uncertainty or needed a routine check-up. They preferred quick access for likely minor 'low impact' symptoms. Appointment systems in general practice should be sufficiently flexible to meet these different preferences.

How are different types of continuity achieved? A mixed methods longitudinal study.

BACKGROUND: In the context of developments in healthcare services that emphasise swift access to care, concern has been expressed about whether and how continuity of care, particularly interpersonal continuity, will continue to be achieved. AIM: To explore how patients regard and use primary care services in relation to continuity of provider and access to care, to identify factors that promote or hinder their success in achieving their preferences, and to describe what this means for how different types of continuity are achieved. DESIGN OF STUDY: Longitudinal, mixed methods. SETTING: Community in London and Leicester. METHOD: Purposive sample of 31 patients recruited from general practices, walk-in centres and direct advertising. Data collection involved in-depth interviews, consultation record booklets completed over 6 months and general practice records for the year including the study period. Data were analysed qualitatively. RESULTS: Four patterns were identified in the way patients used primary care. These were shaped by their own preferences, by the organisation and culture of their primary care practices, and by their own and their provider's efforts to achieve their preferences. Different configurations of these factors gave rise to different types of continuity. Patients were not always able to achieve the type they wanted. Patients with apparently similar consulting patterns could experience them differently. CONCLUSION: Within a programme of modernisation, policies that promote a commitment to meeting the preferences of different patients with flexibility and understanding are most likely to provide continued support for interpersonal and other types of continuity of care.

Service factors causing delay in specialist assessment for TIA and minor stroke: a qualitative study of GP and patient perspectives.

OBJECTIVE: To understand how service factors contribute to delays to specialist assessment following transient ischaemic attack (TIA) or minor stroke. DESIGN: Qualitative study using semistructured interviews, analysis by constant comparison. SETTING: Leicester, UK. PARTICIPANTS: Patients diagnosed with TIA or minor stroke, at hospital admission or in a rapid-access TIA clinic (n=42), general practitioners (GPs) of participating patients if they had been involved in the patients' care (n=18). DATA: Accounts from patients and GPs of factors contributing to delay following action to seek help from a healthcare professional (HCP). RESULTS: The following categories of delay were identified. First, delay in assessment in general practice following contact with the service; this related to availability of same day appointments, and the role of the receptionist in identifying urgent cases. Second, delays in diagnosis by the HCP first consulted, including GPs, optometrists, out-of-hours services, walk-in centres and the emergency department. Third, delays in referral after a suspected diagnosis; these included variable use of the ABCD(2) (Age, Blood pressure, Clinical features, Duration, Diabetes) risk stratification score and referral templates in general practice, and referral back to the patients' GP in cases where he/she was not the first HCP consulted. CONCLUSIONS: Primary and emergency care providers need to review how they can best handle patients presenting with symptoms that could be due to stroke or TIA. In general practice, this may include receptionist training and/or triage by a nurse or doctor. Mechanisms need to be established to enable direct referral to the TIA clinic when patients whose symptoms have resolved present to other agencies. Further work is needed to improve diagnostic accuracy by non-specialists.

Problems with a 'target' approach to access in primary care: a qualitative study.

We report an analysis of the qualitative phase of a study of patients' and carers' views of primary care services, focusing on their experiences of access to face-to-face general practitioner (GP) consultations during the period when new access policies were being implemented. Practices interpreted the new policy in various ways; restricted interpretations, including restriction of access to telephone booking, could cause distress to patients. Patients and carers welcomed flexible interpretations of the policy that offered choice, such as a choice of GP, or of booking in advance.

Anticipatory prescribing in terminal care at home: what challenges do community health professionals encounter?

BACKGROUND: The prompt availability of medications to manage symptoms is key to high quality end-of-life care and anticipatory prescribing of these drugs is thought good practice. This study explored the challenges encountered by primary and community health professionals in Leicestershire and Rutland related to anticipatory prescribing when caring for terminally ill patients who wish to remain at home to die. METHOD: A qualitative study was conducted using eight focus groups (54 participants) and nine individual interviews with a purposively sampled range of health professionals providing care for people who wished to die at home. Themes were identified iteratively via constant comparison. RESULTS: Challenges fell into four categories: resourcing concerns, professional expertise/experience, professionals' relationships with patients, and professionals' relationships with other professionals. The latter included the most serious perceived challenges. Links between community and hospital care providers and between 'usual' hours and 'out-of-hours' care providers were seen as particularly unstable. CONCLUSIONS: These findings suggest that building and maintaining trusting, responsive, personal links between professionals, both within and between teams, is essential when implementing good practice guidelines about anticipatory end-of-life prescribing in the community. The need for good communication and relationships between patients and professionals and maintaining expertise and confidence in end-of-life care are also key factors in the effective use of anticipatory prescribing for symptom management for dying patients.

Living with nystagmus: a qualitative study.

BACKGROUND/AIMS: To identify aspects of daily living affected by nystagmus. METHODS: Semistructured interviews were conducted at the University of Leicester, UK with participants with acquired and infantile nystagmus. In total 21, participants were purposively sampled and recruited. Transcript analysis was conducted using constant comparative technique, based upon the grounded theory, to identify specific areas of living affected by nystagmus. RESULTS: Analysis identified six domains that were adversely affected by nystagmus; visual function, restriction of movement, standing out/not fitting in, feelings about the inner self, negativity about the future and relationships. Cosmetic appearance of nystagmus, including others' avoidant response to this, was described (n=18), as was others' failure to recognise what it is like to have nystagmus (n=18). Driving issues were frequently raised (n=19) and restrictions in occupation choice/opportunities (n=17) were highlighted. Reliance on others (n=16) also emerged. Additional to other categories was an overarching and universal distress arising from nystagmus affecting every aspect of everyday life. CONCLUSION: Interviews revealed universally negative experiences of living with nystagmus that are previously unreported. Findings are similar to studies conducted for strabismus, in particular with respect to cosmetic impact. This study provides the content that is required to develop a nystagmus-specific quality of life tool.

Receiving a summary of the results of a trial: qualitative study of participants' views.

OBJECTIVE: To explore trial participants' responses to receiving a summary of the results of a trial in pregnancy. DESIGN: Qualitative study with semistructured interviews. PARTICIPANTS: 20 women who had when pregnant participated in the ORACLE trial of antibiotics for preterm labour and preterm rupture of the membranes and requested a copy of the trial results. RESULTS: Less than a fifth of women who participated in the ORACLE trial indicated that they wished to receive the trial results. Reactions to the leaflet summarising the trial results were generally positive or neutral, although some women had difficulty in understanding the leaflet, and there was evidence of possible negative implications for women who had adverse outcomes. Women requested the results because they were interested in being able to complete their own personal narrative. They wished to know to which arm of the trial they had been allocated and the implications for their own pregnancy, and they were disappointed with receiving a generic summary. Women's accounts indicated some confusion about the trial findings. CONCLUSIONS: Recommendations that research participants be routinely provided with the results of studies have been made without the benefit of research to show the consequences of doing this or how it should best be managed. Caution is needed, as is more evaluation of how feedback of results should be handled, and assessment of the risks, benefits, and costs.

Managing communication with young people who have a potentially life threatening chronic illness: qualitative study of patients and parents.

OBJECTIVES: To examine young people's and parents' accounts of communication about cancer in childhood. DESIGN: Semistructured interviews analysed using the constant comparative method. SETTING: Paediatric oncology unit. PARTICIPANTS: 13 families, comprising 19 parents (13 mothers, six fathers) and 13 patients aged 8-17 years, recruited from one paediatric oncology unit. The patients had cancer or brain tumour. RESULTS: Most parents described acting in an executive-like capacity, managing what and how their children were told about their illness, particularly at the time of diagnosis. Their accounts were shaped by concerns to manage their identity as strong and optimistic parents and to protect their child's wellbeing. The patients identified elements of their parents' role that both facilitated and constrained their communication, and while they welcomed their parents' involvement, some expressed unease with the constraining aspects of their parents' role. Some young people described feeling marginalised in consultations and pointed to difficulties they experienced in encounters with some doctors. CONCLUSIONS: There are difficulties in managing communication with young people who have a chronic, life threatening illness. Health professionals need to be aware of how the social positioning of young people (relative to adults) and the executive role of parents can contribute to the marginalisation of young people and hamper the development of successful relationships between themselves and young patients.

How important is personal care in general practice?

OBJECTIVES: To explore patients' perceptions of the features of personal care and how far these are shared by healthcare providers; whether a continuing relationship between a health professional and a patient is essential for personal care; and the circumstances in which a continuing relationship is important. DESIGN: Qualitative analysis of semistructured interviews using the "framework" approach. SETTING: Six general practices in Leicestershire. PARTICIPANTS: 40 patients aged > or = 18 years, 13 general practitioners, 10 practice and community nurses, and six practice administrative staff, recruited through participating practices. RESULTS: Patients' and healthcare providers' accounts cited human communication, individualised treatment or management, and whole person care as features of personal care. Personal care was described in three different contexts-a continuing relationship, a single consultation, and from the practice as a whole. The extent to which a continuing relationship was important for personal care was determined by the reason for consulting, as well as patients' consulting history and lifestyle. CONCLUSIONS: Patients, general practitioners, primary care nurses, and administrative staff hold similar views on the meaning of personal care, despite differences of emphasis reflecting their different roles. Personal care is promoted by but not always dependent on a continuing provider-patient relationship; human communication and individualised care emerged as important in making care personal whatever the context. Most respondents valued relationships in primary care and had clear ideas about when care in the context of a relationship was most valuable.

Patients' accounts of being removed from their general practitioner's list: qualitative study.

OBJECTIVE: To explore patients' accounts of being removed from a general practitioner's list. DESIGN: Qualitative analysis of semistructured interviews. SETTING: Patients' homes in Leicestershire. PARTICIPANTS: 28 patients who had recently been removed from a general practitioner's list. RESULTS: The removed patients gave an account of themselves as having genuine illnesses needing medical care. In putting their case that their removal was unjustified, patients were concerned to show that they were "good" patients who complied with the rules that they understood to govern the doctor-patient relationship: they tried to cope with their illness and follow medical advice, used general practice services "appropriately," were uncomplaining, and were polite with doctors. Removed patients also used their accounts to characterise the removing general practitioner as one who broke the lay rules of the doctor-patient relationship. These "bad" general practitioners were rude, impersonal, uncaring, and clinically incompetent and lied to patients. Patients felt very threatened by being removed from their general practitioner's list; they experienced removal as an attack on their right to be an NHS patient, as deeply distressing, and as stigmatising. CONCLUSIONS: Removal is an overwhelmingly negative and distressing experience for patients. Many of the problems encountered by removed patients may be remediable through general practices having an explicit policy on removal and procedures in place to help with "difficult" patients.