Neurocognitive Function, Psychosocial Outcome, and Health-Related Quality of Life of the First-Generation Metastatic Melanoma Survivors Treated with Ipilimumab.

Purpose: To assess neurocognitive function (NCF), psychosocial outcome, health-related quality of life (HRQoL), and long-term effects of immune-related adverse events (irAE) on metastatic melanoma survivors treated with ipilimumab (IPI).

Methods: Melanoma survivors were identified within two study populations ( = 104), at a single-center university hospital, and defined as patients who were disease-free for at least 2 years after initiating IPI. Data were collected using 4 patient-reported outcome measures, computerized NCF testing, and a semistructured interview at the start and 1-year follow-up.

Euthanasia embedded in palliative care. Responses to essentialistic criticisms of the Belgian model of integral end-of-life care.

The Belgian model of 'integral' end-of-life care consists of universal access to palliative care (PC) and legally regulated euthanasia. As a first worldwide, the Flemish PC organisation has embedded euthanasia in its practice. However, some critics have declared the Belgian-model concepts of 'integral PC' and 'palliative futility' to fundamentally contradict the essence of PC.

Does legal physician-assisted dying impede development of palliative care? The Belgian and Benelux experience.

Background: In 2002, physician-assisted dying was legally regulated in the Netherlands and Belgium, followed in 2009 by Luxembourg. An internationally frequently expressed concern is that such legislation could stunt the development of palliative care (PC) and erode its culture. To study this, we describe changes in PC development 2005-2012 in the permissive Benelux countries and compare them with non-permissive countries.

Characteristics of Belgian "life-ending acts without explicit patient request": a large-scale death certificate survey revisited.

Background: "Life-ending acts without explicit patient request," as identified in robust international studies, are central in current debates on physician-assisted dying. Despite their contentiousness, little attention has been paid to their actual characteristics and to what extent they truly represent nonvoluntary termination of life.

Methods: We analyzed the 66 cases of life-ending acts without explicit patient request identified in a large-scale survey of physicians certifying a representative sample of deaths (n = 6927) in Flanders, Belgium, in 2007.

Sex Differences in Patients with Chronic Pain Following Whiplash Injury: The Role of Depression, Fear, Somatization, Social Support, and Personality Traits.

Background: Chronic whiplash-associated disorders (chronic WAD) cover a large variety of clinical manifestations that can occur after a whiplash injury. Women have an increased risk of developing chronic WAD, and it is suggested that psychosocial factors are related to long-term pain and functioning following whiplash injury and persistence of chronic pain. This leads to the question whether there are sex differences in psychosocial factors in chronic WAD.

Questions and answers on the Belgian model of integral end-of-life care: experiment? Prototype? : "Eu-euthanasia": the close historical, and evidently synergistic, relationship between palliative care and euthanasia in Belgium: an interview with a doctor involved in the early development of both and two of his successors.

This article analyses domestic and foreign reactions to a 2008 report in the British Medical Journal on the complementary and, as argued, synergistic relationship between palliative care and euthanasia in Belgium. The earliest initiators of palliative care in Belgium in the late 1970s held the view that access to proper palliative care was a precondition for euthanasia to be acceptable and that euthanasia and palliative care could, and should, develop together. Advocates of euthanasia including author Jan Bernheim, independent from but together with British expatriates, were among the founders of what was probably the first palliative care service in Europe outside of the United Kingdom.

Expressed wishes and incidence of euthanasia in advanced lung cancer patients.

This study explores expressed wishes and requests for euthanasia (i.e. administration of lethal drugs at the explicit request of the patient), and incidence of end-of-life decisions with possible life-shortening effects (ELDs) in advanced lung cancer patients in Flanders, Belgium.

Felicitometric hermeneutics: interpreting quality of life measurements.

The use of quality of life (QOL) outcomes in clinical trials is increasing as a number of practical, ethical, methodological, and regulatory reasons for their use have become apparent. It is important, then, that QOL measurements and differences between QOL scores be readily interpretable. We study interpretation in two contexts: when determining QOL and when basing decisions on QOL differences.

Preferred and actual involvement of advanced lung cancer patients and their families in end-of-life decision making: a multicenter study in 13 hospitals in Flanders, Belgium.

Context: Death is often preceded by medical decisions that potentially shorten life (end-of-life decisions [ELDs]), for example, the decision to withhold or withdraw treatment. Respect for patient autonomy requires physicians to involve their patients in this decision making.

Objectives: The objective of this study was to examine the involvement of advanced lung cancer patients and their families in ELD making and compare their actual involvement with their previously stated preferences for involvement.

A survey on self-assessed well-being in a cohort of chronic locked-in syndrome patients: happy majority, miserable minority.

Objectives Locked-in syndrome (LIS) consists of anarthria and quadriplegia while consciousness is preserved. Classically, vertical eye movements or blinking allow coded communication. Given appropriate medical care, patients can survive for decades.

Recruitment bias in chronic pain research: whiplash as a model.

In science findings which cannot be extrapolated to other settings are of little value. Recruitment methods vary widely across chronic whiplash studies, but it remains unclear whether this generates recruitment bias. The present study aimed to examine whether the recruitment method accounts for differences in health status, social support, and personality traits in patients with chronic whiplash-associated disorders (WAD).

Long-term functioning following whiplash injury: the role of social support and personality traits.

Transition from acute whiplash injury to either recovery or chronicity and the development of chronic whiplash-associated disorders (WAD) remains a challenging issue for researchers and clinicians. The roles of social support and personality traits in long-term functioning following whiplash have not been studied concomitantly. The present study aimed to examine whether social support and personality traits are related to long-term functioning following whiplash.

Preferences of patients with advanced lung cancer regarding the involvement of family and others in medical decision-making.

Objective: To explore the preferences of competent patients with advanced lung cancer regarding involvement of family and/or others in their medical decision-making, and their future preferences in case of loss of competence.

Methods: Over 1 year, physicians in 13 hospitals in Flanders, Belgium, recruited patients with initial non-small–cell lung cancer, stage IIIb or IV. The patients were interviewed with a structured questionnaire every 2 months until the fourth interview and every 4 months until the sixth interview.

Are patients' preferences for information and participation in medical decision-making being met? Interview study with lung cancer patients.

We examined the degree to which newly diagnosed patients with advanced lung cancer wanted to be informed and involved in medical decision-making, and whether the patients felt their preferences were met. Patients from 13 hospitals in Flanders were interviewed with a standard questionnaire. A total of 128 patients (68%) participated.

Cross-national comparability of the WHOQOL-BREF: a measurement invariance approach.

Purpose: To evaluate whether the WHOQOL-BREF measures the QOL construct in the same way across nations.

Methods: Students from Flanders, Belgium and Iran completed the WHOQOL-BREF as part of a larger Quality of Life questionnaire. Their responses were compared using a multi-group confirmatory factor analysis.

Preferences of advanced lung cancer patients for patient-centred information and decision-making: a prospective multicentre study in 13 hospitals in Belgium.

Objective: To identify preferences of advanced lung cancer patients for receiving information and participating in decision-making concerning treatment options, health-care-setting transfers and end-of-life decision-making.

Methods: Over the course of 1 year, pulmonologists and oncologists in 13 hospitals in Flanders, Belgium, invited patients with an initial diagnosis of non-small-cell lung cancer IIIb/IV to participate in the study. Shortly after inclusion, the patients were interviewed with a structured questionnaire.

Locked-in syndrome in children: report of five cases and review of the literature.

The locked-in syndrome is a rare neurologic disorder defined by (1) the presence of sustained eye opening; (2) preserved awareness; (3) aphonia or hypophonia; (4) quadriplegia or quadriparesis; and (5) a primary mode of communication that uses vertical or lateral eye movement or blinking. Five cases are reported here, and previous literature is reviewed. According to the literature, the most common etiology of locked-in syndrome in children is ventral pontine stroke, most frequently caused by a vertebrobasilar artery thrombosis or occlusion.

Development of palliative care and legalisation of euthanasia: antagonism or synergy?

Debates about euthanasia often polarise opinion, but describe how in Belgium the two camps grew up side by side to mutual benefit

Truth-telling at the end of life: a pilot study on the perspective of patients and professional caregivers.

Objective: To describe the attitudes towards truth-telling of both terminal patients and professional caregivers, and to determine their perceived barriers to full information exchange.

Methods: In-depth interviews with 17 terminal patients selected through GPs and staff members of Flemish palliative care centres, and 3 focus groups with different professional caregivers. Analysis was based on grounded theory.

The role of general practitioners in continuity of care at the end of life: a qualitative study of terminally ill patients and their next of kin.

Objectives: Exploring terminal patients' perceptions of GPs' role in delivering continuous end-of-life care and identifying barriers to this.

Design: Qualitative interview study with patients (two consecutive interviews).

Setting: Primary care Belgium.

End-of-life decisions among cancer patients compared with noncancer patients in Flanders, Belgium.

Purpose: Incidence studies reported more end-of-life decisions with possible/certain life-shortening effect (ELDs) among cancer patients than among noncancer patients. These studies did not correct for the different proportions of sudden/unexpected deaths of cancer versus noncancer patients, which could have biased the results. We investigated incidences and characteristics of ELDs among nonsudden cancer and noncancer deaths.