Clare Seamark

Living with severe chronic obstructive pulmonary disease (COPD): perceptions of patients and their carers: An interpretative phenomenological analysis

Background: A study designed to explore the experiences of patients with severe chronic obstructive pulmonary disease (COPD) and their carers, particularly with regard to ongoing and palliative care needs. Methods: The participants were nine men and one woman with severe COPD and the carers of eight of the men, in East Devon, UK. Semi-structured interviews were undertaken, transcribed and analysed using interpretative phenomenological analysis (IPA). Results: The emergent themes were of losses, adaptation, relationships with health professionals and effect on carer. Losses reflected the loss of personal liberty and dignity and of previous expectations of the future. Adaptation included strategies to cope with the effects of the disease. Relationships related to both positive and negative aspects of contact with health professionals. There was appreciation for continuity of care and reassurance. The effect on the carer was evident particularly as they had to take on multiple roles. They also experienced some of the same losses as the patient and appeared enmeshed with the illness. Conclusions: This study confirmed the inexorable decline in activities of daily life and social isolation for patients with severe COPD. Adaptive strategies were common and some positive aspects were identified. Support from the primary health care team was appreciated. The strain on carers was very apparent. The concept of a more structured sharing of information and a surveillance role mediated by health care professionals known to the patient and carer would be a pragmatic approach to improving care.

Towards a theory of continuity of care

As a principle of healthcare planning, continuity of care is losing ground. It is increasingly being superseded by other principles—notably, accessibility and plurality of provision. Baker1 has identified the pressures and Hjortdahl2 writes of continuity ‘going out of style’. National Health Service (NHS) walk-in centres provide open-access primary care on sites separate from general practices and staffed by different people. For the first time, it is possible that continuity of care will be phased out of NHS planning. If this happens, what will be the consequences for patients and doctors? Over many years a research group in Exeter, including all the authors of this paper, has been developing a theory of continuity, based partly on clinical experience and partly on published evidence. The essence of the Exeter theory is that, in primary care, a ‘personal doctor’ with accumulating knowledge of the patient’s history, values, hopes and fears will provide better care than a similarly qualified doctor who lacks such knowledge; and that the benefits of such continuity will include not only greater satisfaction for the patient but also more efficient consultations, better preventive care and lower costs. When we assess continuity in primary care, the duration of registration with the general practitioner (GP) is only one background factor. A more important consideration is the total time the patient and doctor have been in direct communication; and this will include contacts about third parties, such as a child, or an elderly relative during a home visit. We recognize that continuity can have disadvantages; for example, a fresh eye may see what the familiar eye has missed. In this paper we examine the published evidence for and against continuity in primary care.

Design or accident? The natural history of teenage pregnancy

The UK has the highest rate of teenage pregnancy in Western Europe. A retrospective record-based study was conducted in an East Devon general practice to gain greater understanding of the outcome of first teenage pregnancy and subsequent reproductive history. The comparison group was women who had first conceived between the ages of 25 and 29 years. 149/673 women born between 1968 and 1977 became pregnant when teenagers. Of these, 70 (47%) had the baby, 67 (45%) had a termination and 10 (7%) had a spontaneous miscarriage; 2 others experienced fetal loss. Of the women aged 25-29 at first conception, 127 (92%) had the baby, 6 (4%) had a termination and 5 (4%) had a miscarriage. 40 (27%) of the teenage group went on to have a second teenage pregnancy, including 12 of the 67 who had their first pregnancy terminated. Although teenage pregnancy is often viewed as unplanned and unwanted, the reality is more complex. Among this group, many first pregnancies were desired. Even among those whose first pregnancy was terminated, 18% went on to have a baby while still a teenager.

Palliative care in India.

While India has a long tradition of home-based spiritual and religious care of the dying, there has been no contemporary palliative care until relatively recently. The existing and planned palliative care services in India are presented, and future perspectives and the opportunities for training for both professionals and lay volunteers are discussed.

Accessing out-of-hours care following implementation of the GMS contract: an observational study

BACKGROUND There is widespread concern that the quality of out-of-hours primary care for patients with complex needs may be at risk now that the new general medical services contract (GMS) has been implemented. AIM To explore changes in the use of out-of-hours services around the time of implementation of the new contract for patients with complex needs, using patients with cancer as an example. DESIGN OF STUDY Longitudinal observational study. SETTING Out-of-hours primary care provider covering Devon (adult population 900,000), UK. METHOD Two, 1-year periods corresponding to pre- (April 2003 to March 2004) and post-contract implementation (October 2004 to September 2005) were sampled. Call rates per 1000 of the adult population (age>or=16 years) were calculated for all calls (any cause) and cancer-related calls. Anonymised outcome and process measures data were extracted. RESULTS Although overall call rates per 1000 population had increased by 26% (185 pre-contract to 233 post-contract), the proportion of cancer-related calls remained relatively constant (2.08% versus 1.96%). Around half (56%) of these callers had advanced cancer needs (including palliative care). By post-contract, the time taken to triage had significantly increased (P<0.001). Although the proportions admitted to hospital or receiving a home visit remained constant, calls where a special message was sent by the out-of-hours clinician to the in-hours team had decreased (P<0.001). CONCLUSION The demand for out-of-hours care for patients with cancer did not alter disproportionately after implementation of the contract. While potential quality indicators (for example, hospital admissions, home visiting rates) remained constant, potentially adverse changes to triage time and communication between out-of-hours and in-hours clinicians were observed. Quality standards and provider databases require further refinement to capture elements of care relevant to patients with complex needs.

Teenagers' Use of Emergency Contraception in a General Practice

British teenagers who become pregnant commonly express ignorance about emergency contraception. A case-note survey was conducted in a general practice serving about 14 200 people in a Devon market town. Of the 373 registered girls aged 15–19 years, 59 (16%) had consulted for emergency contraception, 19 of them more than once. The oral method (Yuzpe regimen) was prescribed eighty times and 2 girls became pregnant. 4 of the 59 girls who used emergency contraception had subsequent unwanted pregnancies. A consultation for emergency contraception presents an opportunity to discuss more reliable and acceptable methods of contraception.

Frequency of non-asthma GP visits predicts asthma exacerbations: an observational study in general practice

BACKGROUND Being able to identify patients at risk of exacerbations is useful as it enables resources to be targeted at these patients. AIMS To test the theoretically-derived prediction that the frequency of non-asthma related visits to the general practitioner (GP) predicts exacerbations. METHODS Clinical and demographic data and both self-report and prescription-based adherence data were obtained from 166 patients diagnosed with asthma attending a GP clinic, all of whom were prescribed inhaled corticosteroids (ICS). Asthma exacerbations (treated by the GP or in hospital) and non-asthma visits and symptoms were assessed from notes for the subsequent 5 years. RESULTS Exacerbations correlated with non-asthma visits (0.35), severity as measured by BTS step (0.28), and with prescription-based adherence (0.28). Asthma severity correlated with non-asthma visits (0.35). Receiver operating curves showed that ≥2 non-asthma visits per year provided 79% sensitivity and 58% specificity for detecting ≥3 exacerbations over 5 years. Poor adherence predicted outcomes only for patients with high levels of non-asthma visits (≥3) and only for those reporting regular-but-less ICS use but not symptom-directed ICS use. CONCLUSIONS Non-asthma visits are a good predictor of asthma exacerbations, particular in non-adherent patients. These results are consistent with a mechanism where exacerbations result from a combination of random oscillating specific and non-specific inflammatory processes. It is important to consider the total patient rather than just the lung when managing patients with asthma.

End-of-life care for patients with COPD in the community setting

Chronic obstructive pulmonary disease (COPD) is a common chronic disease which causes significant mortality and morbidity. The chronic nature of the disease results in patients and carers generally living with the illness for longer than patients with a cancer diagnosis. In the earlier stages of the disease, management focuses on improving symptoms and exercise capacity and reducing exacerbations. As the disease progresses, a palliative care approach to symptom control and the adoption of strategies which accept dying as a normal process is appropriate. This should integrate the psychological and spiritual aspects of patient care and offer a support system to help patients live as actively as possible until death.1 Altering the paradigm to holistic palliative care as death approaches2 is supported in national guidance from bodies such as NICE,3 but defining when this should take place is difficult and in practice it is usually a gradual transition.4 As a large part of end-of-life care for patients with COPD occurs in the community, it falls to the primary healthcare team with the support of specialist palliative care and secondary care services to provide this integrated care. The best available data suggest there are approximately 900 000 patients diagnosed with COPD in England and Wales,5 and allowing for known levels of under-diagnosis, the true number is likely to be around 2 million.3,5 Over 25 000 people died of COPD in the UK last year,6 representing around 5% of all deaths, but this is likely to be an underestimate.7 The challenge for primary care physicians and researchers is making sense of the epidemiology at a practice and individual level in terms of identifying the population with COPD, gauging when a palliative care approach is appropriate, and coordinating services for patients and carers. At …

Concerning women: questionnaire survey of consultations, embarrassment, and views on confidentiality in general practice among women in their teens, thirties and fifties

Background Concern exists that women, and in particular teenagers, do not consult in general practice, particularly for contraception because of embarrassment and concern over confidentiality. The aim of this study was to compare reported consultation rates, embarrassment when consulting, and views on confidentiality of women in three age groups. Methods A postal questionnaire was used to survey women aged 16–19, 36–39 and 56–59 years attending a semi-rural practice in East Devon, UK in December 1999. Results Response rates of 57% (teenagers), 79% (women in their thirties) and 89% (women in their fifties) were achieved. In each group over half the respondents had seen a general practitioner (GP) in the previous 3 months. Embarrassment at attending a GP decreased from 38% of teenagers to only 16% of women in their fifties. There was a similar pattern with 78% of teens and 42% of women in their fifties preferring to see a woman doctor for a womens problem and 31% of teens and 18% of women in their fifties expressing a preference for a woman doctor for any problem. Some 97% of women in their thirties and fifties thought a consultation with a GP would be confidential compared with 88% of the teenagers. Only 9% of the teenage group thought the GP might tell their parents about the consultation. Conclusions This study found that teenagers were just as likely as older women to have seen a GP in the preceding 3 months. Embarrassment at attending decreased with age, as did the preference to see a female doctor for both womens and any problems. The majority of women in each age group believed a consultation with a GP, or practice nurse, was confidential.

Understanding fear and anxiety in patients at the time of an exacerbation of chronic obstructive pulmonary disease: a qualitative study

Objectives To determine the importance of fear and anxiety at the time of an exacerbation of chronic obstructive pulmonary disease. To assess the influence of carers and health professionals on this fear and anxiety. Design A qualitative study to elicit the views of patients and their carers during a hospital admission for exacerbations of chronic obstructive pulmonary disease. Setting Interviews were conducted in a District General Hospital. Participants Twenty patients were interviewed shortly after admission to hospital with an exacerbation. Main outcome measures Key themes were identified using cross-sectional thematic analysis of transcripts where commonalities and differences were identified. Results Four themes emerged: panic and fear; anxiety management techniques used during an exacerbation; intervention from family members and carers; response to medical services. Conclusion Panic and fear are important emotions prior to admission. Many patients recognised the link between panic-fear and a worsening of symptoms, and some were able to use self-management techniques to reduce their panic-fear. Some relatives were seen as helping and others exacerbating the symptoms of panic-fear. The emergency services were seen as positive: providing reassurance and a sense of safety. How best to help patients with chronic obstructive pulmonary disease manage panic and fear remains a challenge.