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Polly Edmonds

Publications and source records attributed to Polly Edmonds.

6 recordsLinked to original sources

Study protocol: delayed intervention randomised controlled trial within the Medical Research Council (MRC) Framework to assess the effectiveness of a new palliative care service.

BACKGROUND: Palliative care has been proposed to help meet the needs of patients who suffer progressive non-cancer conditions but there have been few evaluations of service development initiatives. We report here a novel protocol for the evaluation of a new palliative care service in this context. METHODS/DESIGN: Using the MRC Framework for the Evaluation of Complex Interventions we modelled a new palliative care and neurology service for patients severely affected by Multiple Sclerosis (MS). We conducted qualitative interviews with patients, families and staff, plus a literature review to model and pilot the service. Then we designed a delayed intervention randomised controlled trial to test its effectiveness as part of phase II of the MRC framework. Inclusion criteria for the trial were patients identified by referring clinicians as having unresolved symptoms or psychological concerns. Referrers were advised to use a score of greater than 8 on the Expanded Disability Scale was a benchmark. Consenting patients newly referred to the new service were randomised to either receive the palliative care service immediately (fast-track) or after a 12-week wait (standard best practice). Face to face interviews were conducted at baseline (before intervention), and at 4-6, 10-12 (before intervention for the standard-practice group), 16-18 and 22-24 weeks with patients and their carers using standard questionnaires to assess symptoms, palliative care outcomes, function, service use and open comments. Ethics committee approval was granted separately for the qualitative phase and then for the trial. DISCUSSION: We publish the protocol trial here, to allow methods to be reviewed in advance of publication of the results. The MRC Framework for the Evaluation of Complex Interventions was helpful in both the design of the service, methods for evaluation in convincing staff and the ethics committee to accept the trial. The research will provide valuable information on the effects of palliative care among non-cancer patients and a method to evaluate palliative care in this context.

Journal Article↗

Symptom prevalence and severity in people severely affected by multiple sclerosis.

AIM: This study sought to assess symptom severity and prevalence in people severely affected by multiple sclerosis (MS). METHODS: We collected data on symptoms and problems of patients as self-reported to trained interviewers on standardized questionnaires (including the Palliative Outcome Scale MS symptom checklist, POS-MSS). RESULTS: 52 patients were included, mean age 53 years; 26 had secondary progressive MS, 23 had primary progressive MS, three had other forms; 32/52 were unable to walk independently. Patients reported a mean of nine (median = 8.5, mode = 12) symptoms. Six symptoms affected more than 50% of patients: problems using legs, problems using arms, fatigue/lack of energy, spasms, pain, and feeling sleepy. Higher levels of disability were correlated with greater symptom severity for nine symptoms (Spearman rho ranged 0.28-0.56, p < 0.05). CONCLUSION: Many symptoms in people severely affected by MS are as highly prevalent and severe as those experienced by patients with advanced cancer. Increased disability is associated with increased severity for some symptoms.

Activities of Daily Living↗

The healthcare needs of chronic obstructive pulmonary disease patients in the last year of life.

Chronic obstructive pulmonary disease (COPD) causes almost as many deaths as lung cancer, yet evidence about the impact of COPD in the latter stages of illness is limited. We assessed the healthcare needs of COPD patients in the last year of life through a retrospective survey of the informants of 399 deaths from COPD in four London health authorities between January and May 2001. We assessed symptoms, day to day functioning, contact with health and social services, formal and informal help with personal care, information received and place of death. We obtained data on 209 (52%) deceased subjects (55% male), average age at death was 76.8 years. Based on the reports of informants of the deaths: 98% were breathless all the time or sometimes in the last year of life; other symptoms reported all the time or sometimes included fatigue or weakness (96%), low mood (77%) and pain (70%); breathlessness was partly relieved in over 50% of those treated; control of other symptoms was poor, with low mood relieved in 8% and no treatment for low mood received by 82% of sufferers; 41% left the house less than once a month or never; 47% were admitted to hospital at least twice in the last year of life; 51% received regular check-ups for their chest; 36% had check-ups by a hospital consultant; 35% saw their general practitioner (GP) less than once every three months or never; 63% knew they might die; 67% died in hospital. Patients who died from COPD lacked surveillance and received inadequate services from primary and secondary care in the year before they died. The absence of palliative care services highlights the need for research into appropriate models of care to address uncontrolled symptoms, information provision and end of life planning

Adult↗

Testosterone therapy in HIV wasting syndrome: systematic review and meta-analysis.

Many HIV patients develop weight loss, which increases morbidity and mortality. We aimed to assess the effects of testosterone therapy on lean body mass, total body weight, over-all exercise functional capacity, and perceived quality of life in patients with HIV wasting syndrome and its adverse effects. We systematically reviewed randomised, placebo-controlled trials that compared the effects of testosterone therapy with placebo in HIV patients with wasting. Eight trials met the inclusion criteria and 417 randomised patients were included. Only six trials used lean-body mass, fat-free mass, or body-cell mass as outcome measures. The meta-analysis of the six trials showed a difference in the lean body mass between the testosterone group and placebo group of 1.22 kg (95% CI 0.23-2.22) for the random effect model and 0.51 kg (0.09-0.93) for fixed effect. However, the difference was much greater in the three trials that used the intramuscular route-3.34 kg in the post-hoc analysis. All eight trials included total body weight as an outcome measure, the meta-analysis of which showed a difference of 1.04 kg (-0.01-2.10) between testosterone group and placebo group by random effect and 0.63 kg (-0.01-1.28) for fixed effect models. Over-all, the incidence of adverse effects is similar in both groups. Testosterone therapy has been shown in this review to increase lean body mass more than placebo. The increase is even greater if the therapy is given intramuscularly. There is also a small positive effect in total body weight. The study is, however, limited by the small numbers and heterogeneity of the population, which potentially introduced bias into the methods and results. Testosterone therapy may be considered in patients with HIV wasting syndrome to reverse muscle loss, but there is a concern about the adverse metabolic effects of long-term testosterone administration and long-term follow-up for these patients is needed.

Body Mass Index↗

'If only someone had told me . . .' A review of the care of patients dying in hospital.

Approximately half of all patients who die do so in hospital. Despite the advent of palliative care in the UK, there is evidence that the care that many patients receive in the final phase of their illness in hospital is poor. Building on a study of bereaved relatives' views of the information provided by an inner city hospital trust during an admission in which a patient died, this article explores the factors that may contribute to sub-optimal care for patients dying in hospital. In particular, a lack of open communication, difficulties in accurate prognostication and a lack of planning of end-of-life care can all result in poor care. Strategies to improve care, such as the use of integrated care pathways, advance directives and education initiatives, are discussed.

Advance Directives↗