'Unbearable suffering': a qualitative study on the perspectives of patients who request assistance in dying

BACKGROUND One of the objectives of medicine is to relieve patients' suffering. As a consequence, it is important to understand patients' perspectives of suffering and their ability to cope. However, there is poor insight into what determines their suffering and their ability to bear it. PURPOSE To explore the constituent elements of suffering of patients who explicitly request euthanasia or physician-assisted suicide (EAS) and to better understand unbearable suffering from the patients' perspective. PATIENTS AND METHODS A qualitative study using in-depth face-to-face interviews was conducted with 31 patients who had requested EAS. The grounded theory approach was used to analyse the data. RESULTS Medical, psycho-emotional, socio-environmental and existential themes contributed to suffering. Especially fatigue, pain, decline, negative feelings, loss of self, fear of future suffering, dependency, loss of autonomy, being worn out, being a burden, loneliness, loss of all that makes life worth living, hopelessness, pointlessness and being tired of living were constituent elements of unbearable suffering. Only patients with a psychiatric (co)diagnosis suffered unbearably all the time. CONCLUSIONS Unbearable suffering is the outcome of an intensive process that originates in the symptoms of illness and/or ageing. According to patients, hopelessness is an essential element of unbearable suffering. Medical and social elements may cause suffering, but especially when accompanied by psycho-emotional and existential problems suffering will become 'unbearable'. Personality characteristics and biographical aspects greatly influence the burden of suffering. Unbearable suffering can only be understood in the continuum of the patients' perspectives of the past, the present and expectations of the future.This study was supported by the Dutch Cancer Society (grant number KUN2007-03736)

One-Particle Measurement of the Antiproton Magnetic Moment

\DeclareRobustCommand{\pbar}{\HepAntiParticle{p}{}{}\xspace} \DeclareRobustCommand{\p}{\HepParticle{p}{}{}\xspace} \DeclareRobustCommand{\mup}{$\mu_{p}${}{}\xspace} \DeclareRobustCommand{\mupbar}{\mu_{\pbar}{}{}\xspace} \DeclareRobustCommand{\muN}{$\mu_N${}{}\xspace For the first time a single trapped \pbar is used to measure the \pbar magnetic moment {\bm\mu}_{\pbar}. The moment {\bm\mu}_{\pbar} = \mu_{\pbar} {\bm S}/(\hbar/2) is given in terms of its spin ${\bm S}$ and the nuclear magneton (\muN) by \mu_{\pbar}/\mu_N = -2.792\,845 \pm 0.000\,012. The 4.4 parts per million (ppm) uncertainty is 680 times smaller than previously realized. Comparing to the proton moment measured using the same method and trap electrodes gives \mu_{\pbar}/\mu_p = -1.000\,000 \pm 0.000\,005 to 5 ppm, for a proton moment ${\bm{\mu}}_{p} = \mu_{p} {\bm S}/(\hbar/2)$, consistent with the prediction of the CPT theorem.Comment: 4 pages, 4 figures. arXiv admin note: substantial text overlap with arXiv:1201.303

A system for room acoustic simulation for one's own voice

The real-time simulation of room acoustical environments for one’s own voice, using generic software, has been difficult until very recently due to the computational load involved: requiring real-time convolution of a person’s voice with a potentially large number of long room impulse responses. This thesis is presenting a room acoustical simulation system with a software-based solution to perform real-time convolutions with headtracking; to simulate the effect of room acoustical environments on the sound of one’s own voice, using binaural technology. In order to gather data to implement headtracking in the system, human head- movements are characterized while reading a text aloud. The rooms that are simulated with the system are actual rooms that are characterized by measuring the room impulse response from the mouth to ears of the same head (oral binaural room impulse response, OBRIR). By repeating this process at 2o increments in the yaw angle on the horizontal plane, the rooms are binaurally scanned around a given position to obtain a collection of OBRIRs, which is then used by the software-based convolution system. In the rooms that are simulated with the system, a person equipped with a near- mouth microphone and near-ear loudspeakers can speak or sing, and hear their voice as it would sound in the measured rooms, while physically being in an anechoic room. By continually updating the person’s head orientation using headtracking, the corresponding OBRIR is chosen for convolution with their voice. The system described in this thesis achieves the low latency that is required to simulate nearby reflections, and it can perform convolution with long room impulse responses. The perceptual validity of the system is studied with two experiments, involving human participants reading aloud a set-text. The system presented in this thesis can be used to design experiments that study the various aspects of the auditory perception of the sound of one’s own voice in room environments. The system can also be adapted to incorporate a module that enables listening to the sound of one’s own voice in commercial applications such as architectural acoustic room simulation software, teleconferencing systems, virtual reality and gaming applications, etc

Comprehensive self management and routine monitoring in chronic obstructive pulmonary disease patients in general practice: randomised controlled trial

OBJECTIVE To assess the long term effects of two different modes of disease management (comprehensive self management and routine monitoring) on quality of life (primary objective), frequency and patients' management of exacerbations, and self efficacy (secondary objectives) in patients with chronic obstructive pulmonary disease (COPD) in general practice. DESIGN 24 month, multicentre, investigator blinded, three arm, pragmatic, randomised controlled trial. SETTING 15 general practices in the eastern part of the Netherlands. PARTICIPANTS Patients with COPD confirmed by spirometry and treated in general practice. Patients with very severe COPD or treated by a respiratory physician were excluded. INTERVENTIONS A comprehensive self management programme as an adjunct to usual care, consisting of four tailored sessions with ongoing telephone support by a practice nurse; routine monitoring as an adjunct to usual care, consisting of 2-4 structured consultations a year with a practice nurse; or usual care alone (contacts with the general practitioner at the patients' own initiative). OUTCOME MEASURES The primary outcome was the change in COPD specific quality of life at 24 months as measured with the chronic respiratory questionnaire total score. Secondary outcomes were chronic respiratory questionnaire domain scores, frequency and patients' management of exacerbations measured with the Nijmegen telephonic exacerbation assessment system, and self efficacy measured with the COPD self-efficacy scale. RESULTS 165 patients were allocated to self management (n=55), routine monitoring (n=55), or usual care alone (n=55). At 24 months, adjusted treatment differences between the three groups in mean chronic respiratory questionnaire total score were not significant. Secondary outcomes did not differ, except for exacerbation management. Compared with usual care, more exacerbations in the self management group were managed with bronchodilators (odds ratio 2.81, 95% confidence interval 1.16 to 6.82) and with prednisolone, antibiotics, or both (3.98, 1.10 to 15.58). CONCLUSIONS Comprehensive self management or routine monitoring did not show long term benefits in terms of quality of life or self efficacy over usual care alone in COPD patients in general practice. Patients in the self management group seemed to be more capable of appropriately managing exacerbations than did those in the usual care group. TRIAL REGISTRATION Clinical trials NCT00128765.This study was funded by the Netherlands Organisation for Health Research and Development (ZonMw) and Partners in Care Solutions for COPD (PICASSO). The funding sources had no role in the design, conduct, or reporting of the stud

The value of reasons for encounter in early detection of colorectal cancer

BACKGROUND: Symptoms with a high predictive power for colorectal cancer (CRC) do not exist. OBJECTIVE: To explore the predictive value of patients' reason for encounter (RFE) in the two years prior to the diagnosis of CRC. METHODS: A retrospective nested case-control study using prospectively collected data from electronic records in general practice over 20 years. Matching was done based on age (within two years), gender and practice. The positive likelihood ratios (LR+) and odds ratios (OR) were calculated for RFE between cases and controls in the two years before the index date. RESULTS: We identified 184 CRC cases and matched 366 controls. Six RFEs had significant LR + and ORs for CRC, which may have high predictive power. These RFEs are part of four chapters in the International Classification of Primary Care (ICPC) that include tiredness (significant at 3-6 months prior to the diagnosis; LR+ 2.6 and OR 3.07; and from 0 to 3 months prior to the diagnosis; LR+ 2.0 and OR 2.36), anaemia (significant at three months before diagnosis; LR+ 9.8 and OR 16.54), abdominal pain, rectal bleeding and constipation (significant at 3-6 months before diagnosis; LR+ 3.0 and OR 3.33; 3 months prior to the diagnosis LR+ 8.0 and OR 18.10) and weight loss (significant at three months before diagnosis; LR+ 14.9 and OR 14.53). CONCLUSION: Data capture and organization in ICPC permits study of the predictive value of RFE for CRC in primary care

Bursaries, writing grants and fellowships: a strategy to develop research capacity in primary health care

BACKGROUND: General practitioners and other primary health care professionals are often the first point of contact for patients requiring health care. Identifying, understanding and linking current evidence to best practice can be challenging and requires at least a basic understanding of research principles and methodologies. However, not all primary health care professionals are trained in research or have research experience. With the aim of enhancing research skills and developing a research culture in primary health care, University Departments of General Practice and Rural Health have been supported since 2000 by the Australian Government funded 'Primary Health Care Research Evaluation and Development (PHCRED) Strategy'. A small grant funding scheme to support primary health care practitioners was implemented through the PHCRED program at Flinders University in South Australia between 2002 and 2005. The scheme incorporated academic mentors and three types of funding support: bursaries, writing grants and research fellowships. This article describes outcomes of the funding scheme and contributes to the debate surrounding the effectiveness of funding schemes as a means of building research capacity. METHODS: Funding recipients who had completed their research were invited to participate in a semi-structured 40-minute telephone interview. Feedback was sought on acquisition of research skills, publication outcomes, development of research capacity, confidence and interest in research, and perception of research. Data were also collected on demographics, research topics, and time needed to complete planned activities. RESULTS: The funding scheme supported 24 bursaries, 11 writing grants, and three research fellows. Nearly half (47%) of all grant recipients were allied health professionals, followed by general practitioners (21%). The majority (70%) were novice and early career researchers. Eighty-nine percent of the grant recipients were interviewed. Capacity, confidence, and level of research skills in ten core areas were generally considered to have improved as a result of the award. More than half (53%) had presented their research and 32% had published or submitted an article in a peer-reviewed journal. CONCLUSION: A small grant and mentoring scheme through a University Department can effectively enhance research skills, confidence, output, and interest in research of primary health care practitioners

Managing the complexity of doing it all : an exploratory study on students' experiences when trained stepwise in conducting consultations

Background: At most medical schools the components required to conduct a consultation, medical knowledge, communication, clinical reasoning and physical examination skills, are trained separately. Afterwards, all the knowledge and skills students acquired must be integrated into complete consultations, an art that lies at the heart of the medical profession. Inevitably, students experience conducting consultations as complex and challenging. Literature emphasizes the importance of three didactic course principles: moving from partial tasks to whole task learning, diminishing supervisors' support and gradually increasing students' responsibility. This study explores students' experiences of an integrated consultation course using these three didactic principles to support them in this difficult task. Methods: Six focus groups were conducted with 20 pre-clerkship and 19 clerkship students in total. Discussions were audiotaped, transcribed and analysed by Nvivo using the constant comparative strategy within a thematic analysis. Results: Conducting complete consultations motivated students in their learning process as future physician. Initially, students were very much focused on medical problem solving. Completing the whole task of a consultation obligated them to transfer their theoretical medical knowledge into applicable clinical knowledge on the spot. Furthermore, diminishing the support of a supervisor triggered students to reflect on their own actions but contrasted with their increased appreciation of critical feedback. Increasing students' responsibility stimulated their active learning but made some students feel overloaded. These students were anxious to miss patient information or not being able to take the right decisions or to answer patients' questions, which sometimes resulted in evasive coping techniques, such as talking faster to prevent the patient asking questions. Conclusion: The complex task of conducting complete consultations should be implemented early within medical curricula because students need time to organize their medical knowledge into applicable clinical knowledge. An integrated consultation course should comprise a step-by-step teaching strategy with a variety of supervisors' feedback modi, adapted to students' competence. Finally, students should be guided in formulating achievable standards to prevent them from feeling overloaded in practicing complete consultations with simulated or real patients

Large variation in use of patient-reported outcome measures: A survey of 188 foot and ankle surgeons

Background: There is an increasing interest in the use of patient reported outcome measures (PROMs). However, there is a large variety of PROMs and a lack of consensus regarding preference for their use. Aim of this study is to determine how often PROMS are used for foot and ankle disorders, for what purpose PROMs are used, and what the preferences of the foot and ankle surgeons are, when choosing a PROM to use.Methods: Members of the Ankleplatform Study Group-Science of Variation Collaborative were invited to participate in this survey by email. The online survey consisted of six questions on the use and preferences regarding foot and ankle PROMs.Results: 188 participants completed the questionnaire. Of the respondents 17% reported not to use PROMs, 72% stated to use PROMS for research, 39% routinely for patient care and 34% for registration or quality assessment. The respondents were familiar with 30 different outcome measures, of which 20 were PROMs. One of the excluded outcome measures, the AOFAS Hindfoot scale was most commonly reported as preferred outcome measure. FAOS and MOXFQ were the preferred PROMs, reported by 9.7% of the surgeons. Subsequently followed by the FFI (4.3%), the FAAM (3.7%) and the VAS-FA (3.7%).Conclusions: A large majority of the foot and ankle surgeons uses PROMs. The AOFAS hindfoot scale is mentioned as the most preferred outcome measure, while in fact this is not a PROM. Of the twenty different PROMs mentioned in this study, most reported were the FAOS and MOXFQ both supported by only 9.7% of the surgeons. For proper comparison between patients in clinical practice and research, consensus is needed on which easy-to-use PROM with adequate clinimetric properties should be used. Therefore more evidence in the field of clinimetrics of foot and ankle outcome measures is needed. (C) 2017 Published by Elsevier Ltd on behalf of European Foot and Ankle Society