The lived experience of breathlessness and its implications for care: a qualitative comparison in cancer, COPD, heart failure and MND

<p>Abstract</p> <p>Background</p> <p>Breathlessness is one of the core symptoms, particularly persistent and frequent, towards the end of life. There is no evidence of how the experience of breathlessness differs across conditions. This paper compares the experience of breathlessness in cancer, COPD, heart failure and MND, four conditions sharing heavy symptom burdens, poor prognoses, high breathlessness rates and palliative care needs.</p> <p>Methods</p> <p>For this qualitative study a purposive sample of 48 patients was included with a diagnosis of cancer (10), COPD (18), heart failure (10) or MND (10) and experiencing daily problems of breathlessness. Patients were recruited from the respective clinics at the hospital; specialist nurses' ward rounds and consultations, and "Breathe Easy" service users meetings in the community. Data were collected through semi-structured, in-depth interviews and participant observation. Breathlessness was compared according to six components derived from explanatory models and symptom schemata, first within groups and then across groups. Frequency counts were conducted to check the qualitative findings.</p> <p>Results</p> <p>All conditions shared the disabling effects of breathlessness. However there were differences between the four conditions, in the specific constraints of the illness and patients' experiences with the health care context and social environment. In cancer, breathlessness signalled the (possible) presence of cancer, and functioned as a reminder of patients' mortality despite the hopes they put in surgery, therapies and new drugs. For COPD patients, breathlessness was perceived as a self-inflicted symptom. Its insidious nature and response from services disaffirmed their experience and gradually led to greater disability in the course of illness. Patients with heart failure perceived breathlessness as a contributing factor to the negative effects of other symptoms. In MND breathlessness meant that the illness was a dangerous threat to patients' lives. COPD and heart failure had similar experiences.</p> <p>Conclusion</p> <p>Integrated palliative care is needed, that makes use of all appropriate therapeutic options, collaborative efforts from health, social care professionals, patients and caregivers, and therapies that acknowledge the dynamic interrelation of the body, mind and spirit.</p

Researching the lived experiences of cancer patients with malignant fungating wounds

Background: Researching the experiences of terminally ill patients with disfiguring wounds is likely to be a challenge anywhere, and this investigation came face-to-face with different attitudes on the part of both patients and nurses and doctors in England (the South-East) and Italy (Tuscany). Aim: To highlight the complexity of researching sensitive subjects and the difficulties encountered from the perspective of the researcher(s). Methods: Fourteen patients were interviewed. In England access was relatively straightforward, with nurses linked to the hospice doing most of the recruitment. Access was more difficult in Italy, with some doctors expressing opposition. Discussion: How ethical is it to treat dying patients as subjects for research? How does research of this kind vary from one culture to another? Conclusions: Interviewees can find it therapeutic to talk about their experiences to a sympathetic listener—although the listening does pose a considerable strain on the researcher

Cognitive-emotional interventions for breathlessness in adults with advanced diseases

© 2017 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd. This is a protocol for a Cochrane Review (Intervention). The objectives are as follows: To assess the effects and safety of interventions targeting cognition, emotion or both as the predominant underlying mechanism of effect to relieve breathlessness in adults suffering from advanced diseases

Improving search filter development: a study of palliative care literature

Background It is difficult to systematically search for literature relevant to palliative care in general medical journals. A previously developed search filter for use on OVID Medline validated using a gold standard set of references identified through hand searching, achieved an unacceptably low sensitivity (45.4%). Retrieving relevant literature is integral to support evidence based practice, and understanding the nature of the incorrectly excluded citations (false negatives) using the filter may lead to improvement in the filter's performance. Methods The objectives were to describe the nature of subjects reflected in the false negative citations and to empirically improve the sensitivity of the search filter. A thematic analysis of MeSH terms by three independent reviewers was used to describe the subject coverage of the missed records. Using a frequency analysis of MeSH terms, those headings which could individually contribute at least 2.5% to sensitivity (occurring 19 or more times) were added to the search filter. All previously run searches were rerun at the same time as the revised filter, and results compared. Results Thematic analysis of MeSH terms identified thirteen themes reflected in the missing records, none of them intrinsically palliative. The addition of six MeSH terms to the existing search filter (physician-patient relations, prognosis, quality of life, survival rate, treatment outcome and attitude to health) led to an increase in sensitivity from 46.3% to 64.7%, offset by a decrease in precision from 72.6% to 21.9%. Conclusion The filter's sensitivity was successfully increased using frequency analysis of MeSH terms, offset by a decrease in precision. A thematic analysis of MeSH terms for the false negative citations confirmed the absence of any intrinsically palliative theme or term, suggesting that future improvements to search filters for palliative care literature will first depend on better identifying how clinicians and researchers conceptualise palliative care. It is suggested that a constellation of parameters: stage of disease (advanced or active), prospect of cure (little or none), and treatment goals (primarily quality of life) may ultimately inform search strategies. This may be similarly true for chronic diseases, which share the inherent passage of time which marks them apart from acute, and therefore more readily identifiable, episodes of care

Can the feedback of patient assessments, brief training, or their combination, improve the interpersonal skills of primary care physicians? A systematic review

<p>Abstract</p> <p>Background</p> <p>Improving quality of primary care is a key focus of international health policy. Current quality improvement efforts place a large focus on technical, clinical aspects of quality, but a comprehensive approach to quality improvement should also include interpersonal care. Two methods of improving the quality of interpersonal care in primary care have been proposed. One involves the feedback of patient assessments of interpersonal care to physicians, and the other involves brief training and education programmes. This study therefore reviewed the efficacy of (i) feedback of real patient assessments of interpersonal care skills, (ii) brief training focused on the improvement of interpersonal care (iii) interventions combining both (i) and (ii)</p> <p>Methods</p> <p>Systematic review of randomised controlled trials. Three electronic databases were searched (CENTRAL, Medline and Embase) and augmented by searches of the bibliographies of retrieved articles. The quality of studies was appraised and results summarised in narrative form.</p> <p>Results</p> <p>Nine studies were included (two patient based feedback studies and seven brief training studies). Of the two feedback studies, one reported a significant positive effect. Only one training study reported a significant positive effect.</p> <p>Conclusion</p> <p>There is limited evidence concerning the effects of patient based feedback. There is reasonable evidence that brief training as currently delivered is not effective, although the evidence is not definitive, due to the small number of trials and the variation in the training methods and goals. The lack of effectiveness of these methods may reflect a number of issues, such as differences in the effectiveness of the interventions in experienced practitioners and those in training, the lack of theory linking feedback to behaviour change, failure to provide sufficient training or to use a comprehensive range of behaviour change techniques. Further research into both feedback and brief training interventions is required before these interventions are routinely introduced to improve patient satisfaction with interpersonal care in primary care. The interventions to be tested in future research should consider using insights from the wider literature on communication outside primary care, might benefit from a clearer theoretical basis, and should examine the use of combined brief training and feedback.</p

Effectiveness of a hand-held fan for breathlessness: a randomised phase II trial

<p>Abstract</p> <p>Background</p> <p>Breathlessness is common and distressing in advanced disease. This phase II study aimed to determine the use and acceptance of a hand-held fan (HHF) to relieve breathlessness, to test the effectiveness of the HHF and to evaluate the recruitment into the study.</p> <p>Methods</p> <p>RCT embedded within a longitudinal study testing a HHF over time compared to a wristband. Patients were included in the longitudinal study when suffering from breathlessness due to advanced cancer or COPD III/IV and could opt in the RCT. Primary outcome was use of the HHF and the wristband after two months. Secondary outcomes were recruitment into the trial and change of breathlessness severity after two months, measured on the modified Borg scale. Baseline data were collected in a personal interview and follow-up data by monthly postal questionnaires.</p> <p>Results</p> <p>109 patients were recruited in the longitudinal study of which 70 patients (64%) participated in the RCT. Non-participants had statistically significant less breathlessness (Borg mean 2.6 (SD 1.48) versus 3.7 (SD 1.83); p = 0.003) and a better functional status (Karnofsky status mean 61.9 (SD 11.2) versus 66.7 (SD 11.0); p = 0.03). Attrition due to drop out or death was high in both groups. After two months, about half of the patients used the HHF but only 20% the wristband without a statistical difference (Fisher's exact test p = 0.2). 9/16 patients judged the HHF as helpful after two months and 4/5 patients the wristband. There was no difference in mean breathlessness change scores between the HHF (Borg change score: mean 0.6 (SD 2.10)) and the wristband (mean 0.8 (SD 2.67)) after two months (p = 0.90).</p> <p>Conclusions</p> <p>Symptom burden and low functional status did not restrain patients from participation in the study. Finding a control for a visible intervention is challenging and needs careful consideration to what is acceptable to patients. The preliminary evidence of effectiveness of the HHF could not be proved. Patients often stopped using the HHF but a small group seemed to benefit which was not necessarily related to a relief in breathlessness. Therefore, more work is necessary on selecting and identifying those who might benefit from the HHF.</p> <p>Trial registration</p> <p>ClinicalTrials.gov Identifier: NCT01123902</p

'It is like a tomato stall where someone can pick what he likes': structure and practices of female sex work in Kampala, Uganda.

BACKGROUND: Effective interventions among female sex workers require a thorough knowledge of the context of local sex industries. We explore the organisation of female sex work in a low socio-economic setting in Kampala, Uganda. METHODS: We conducted a qualitative study with 101 participants selected from an epidemiological cohort of 1027 women at high risk of HIV in Kampala. Repeat in-depth life history and work practice interviews were conducted from March 2010 to June 2011. Context specific factors of female sex workers' day-to-day lives were captured. Reported themes were identified and categorised inductively. RESULTS: Of the 101 women, 58 were active self-identified sex workers operating in different locations within the area of study and nine had quit sex work. This paper focuses on these 67 women who gave information about their involvement in sex work. The majority had not gone beyond primary level of education and all had at least one child. Thirty one voluntarily disclosed that they were HIV-positive. Common sex work locations were streets/roadsides, bars and night clubs. Typically sex occurred in lodges near bars/night clubs, dark alleyways or car parking lots. Overall, women experienced sex work-related challenges at their work locations but these were more apparent in outdoor settings. These settings exposed women to violence, visibility to police, a stigmatising public as well as competition for clients, while bars provided some protection from these challenges. Older sex workers tended to prefer bars while the younger ones were mostly based on the streets. Alcohol consumption was a feature in all locations and women said it gave them courage and helped them to withstand the night chill. Condom use was determined by clients' willingness, a woman's level of sobriety or price offered. CONCLUSIONS: Sex work operates across a variety of locations in the study area in Kampala, with each presenting different strategies and challenges for those operating there. Risky practices are present in all locations although they are higher on the streets compared to other locations. Location specific interventions are required to address the complex challenges in sex work environments