Interdisciplinary research approach based on a mixed-methods design to explore patient altruism at the end of life: a study protocol.

INTRODUCTION: In the end of life context, patients are often seen as somewhat passive recipients of care provided by health professionals and relatives, with little opportunity to be perceived as autonomous and active agents. Since studies show a very high prevalence of altruistic dispositions in palliative care patients, we strive to investigate the concept of patient altruism in a set of six interdisciplinary studies by considering three settings: (1) in the general palliative context-by studying to what extent patient altruism is associated with essential psychological outcomes of palliative care (subproject 1a), how altruism is understood by patients (subproject 1b) and how altruism expressed by patients is experienced by palliative care nurses (subproject 1c); (2) in two concrete decision-making contexts-advance care planning (subproject 2a) and assisted suicide (subproject 2b); and (3) through verbal and non-verbal patient communication in palliative care settings (subproject 3). METHODS AND ANALYSIS: Subproject 1a: a cross-sectional study using validated and standardised questionnaires. Subprojects 1b and 1c: a constructivist grounded theory method aiming at developing a novel theory from semistructured interviews in both patients and nurses. Subproject 2a: a thematic analysis based on (1) audio-recordings of advance care planning encounters and (2) follow-up semidirective interviews with patients and their relatives. Subproject 2b: a qualitative study based on thematic analysis of interviews with patients actively pursuing assisted suicide and one of their relatives.Subproject 3: a conversation analysis based on audio and video-recorded interactions in two settings: (1) palliative inpatient unit and (2) advance care planning discussions. ETHICS AND DISSEMINATION: The study project was approved by the Ethics Committees of the Canton of Vaud, Bern and Ticino (no: 2023-00088). In addition to participation in national and international conferences, each project will be the subject of two scientific publications in peer-reviewed journals. Additional publications will be realised according to result triangulation between projects. A symposium opened to professionals, patients and the public will be organised in Switzerland at the end of the project.

'Thank you for loving me': A qualitative study on perceptions of gratitude and their effects in palliative care patients and relatives.

BACKGROUND: Empirical studies suggest that gratitude positively influence the quality of life of palliative patients and relatives. However, the literature is marked by a lack of conceptual clarity about what gratitude is and whether it can bring about individual and social benefits. AIM: This paper explores how palliative care patients and relatives understand gratitude, how discursive representations of gratitude may affect their positions, perceptions and relations, and how to conceptualise gratitude in the palliative context. DESIGN: We examine 33 gratitude letters written by patients and relatives and 25 semi-structured interviews conducted as part of a pilot gratitude intervention study. We use a qualitative approach, thematic analysis, within a conceptual framework of discourse analysis. SETTINGS/PARTICIPANTS: Data were collected from 23 patients and 13 relatives recruited through three hospital palliative care services in French-speaking Switzerland. RESULTS: Participants articulate gratitude in five ways: (1) appreciating others; (2) love; (3) need to reciprocate; (4) appreciating the little things; (5) solace amid serious illness. While some of these representations are sources of positive emotions and outlook, wellbeing and hope, others may confirm self-perceptions of powerlessness and burden. These results support a tridimensional conceptualisation of gratitude in palliative care as source of individual benefits, valuing closest relationships and moral obligation. CONCLUSION: Our study suggests that gratitude is a key to a good (end of) life, whilst highlighting potential negative effects. It could help healthcare professionals to better understand what gratitude means to patients and relatives, which may facilitate awareness and fostering of gratitude in palliative care.

Giving and receiving thanks: a mixed methods pilot study of a gratitude intervention for palliative patients and their carers.

BACKGROUND: Psychological research examining the nature and workings of gratitude has burgeoned over the past two decades. However, few studies have considered gratitude in the palliative care context. Based on an exploratory study which found that gratitude was correlated with better quality of life and less psychological distress in palliative patients, we designed and piloted a gratitude intervention where palliative patients and a carer of their choice wrote and shared a gratitude letter with each other. The aims of this study are to establish the feasibility and acceptability of our gratitude intervention and provide a preliminary assessment of its effects. METHODS: This pilot intervention study adopted a mixed-methods, concurrent nested, pre-post evaluation design. To assess the intervention's effects, we employed quantitative questionnaires on quality of life, quality of relationship, psychological distress, and subjective burden, as well as semi-structured interviews. To assess feasibility, we considered patients and carers' eligibility, participation and attrition rates, reasons for refusal to participate, appropriateness of intervention timeframe, modalities of participation, and barriers and facilitators. Acceptability was assessed through post-intervention satisfaction questionnaires. RESULTS: Thirty-nine participants completed the intervention and twenty-nine participated in interviews. We did not find any statistically significant pre/post intervention changes for patients, but found significant decrease in psychological distress for carers in terms of depression (median = 3 at T0, 1.5 at T1, p = .034) and total score (median = 13 at T0, 7.5 at T1, p = .041). Thematic analysis of interviews indicates that overall, the intervention had: (1) multiple positive outcomes for over a third of interviewees, in the form of positive emotional, cognitive, and relational effects; (2) single positive outcomes for nearly half of interviewees, who experienced emotional or cognitive effects; (3) no effect on two patients; and (4) negative emotional effects on two patients. Feasibility and acceptability indicators suggest that the intervention was well received by participants, and that it should adopt flexible modalities (e.g. writing or dictating a gratitude message) to ensure that it is feasible and adapted to individual needs and preferences. CONCLUSIONS: Larger scale deployment and evaluation of the gratitude intervention, including a control group, is warranted in order to have a more reliable evaluation of its effectiveness in palliative care.

Posttraumatic growth in palliative care patients and its associations with psychological distress and quality of life.

OBJECTIVES: Posttraumatic growth (PTG) refers to positive psychological changes resulting from individuals' inner struggles with traumatic events such as life-threatening illness. Although palliative care patients are confronted with their own mortality, little is known about their PTG experience. This study investigates whether PTG is an empirically relevant concept for palliative patients by assessing the prevalence and areas of growth, and examining associations with psychological distress and quality of life. METHODS: Participants were recruited in Switzerland. Using validated questionnaires, we assessed PTG (Posttraumatic Growth Inventory, PTGI), psychological distress (Hospital Anxiety and Depression Scale), and quality of life (McGill-Quality of Life Questionnaire - Revised). We performed descriptive analyses, Spearman correlations, and linear regressions. RESULTS: Fifty-five patients completed the PTGI, 44% of whom experienced no/low growth, 47% moderate growth, and 9% high/very high growth. Participants experienced the greatest positive changes in terms of appreciating life and relating to others. We found significant negative bivariate correlations between PTG and psychological distress (r = -0.33) and between PTG and depression (r = -0.47). Linear regressions showed that PTG is associated with depression (ß = -0.468; p = 0.000), but not with anxiety or quality of life (adjusted R2 = 0.219). SIGNIFICANCE OF RESULTS: Over half of our patients experienced moderate to very high growth, indicating that PTG is an empirically relevant psychological process in palliative care. PTG is associated with lower levels of depression, possibly as those experiencing growth are more able to process past traumas and build a more positive outlook on one's life and self. By contrast, the relative independence of anxiety and PTG points to the likely coexistence of positive and negative psychological responses to trauma. The lack of association between PTG and quality of life points to the uniqueness of the PTG concept in capturing how people access deeper meaning and greater appreciation of life along the path toward posttraumatic self-reconstruction.

[Identifying patients in need of general or specialised palliative care with ID-PALL]. / Identifier les patients nécessitant des soins palliatifs généraux ou spécialisés grâce à ID-PALL.

Palliative care is frequently associated with end of life and cancer, both in the general population and among healthcare professionals. ID-PALL is a new, short, easy-to-use instrument to help professionals to identify general or specialized palliative care needs in adult inpatients in different care settings. ID-PALL has already been validated in internal medicine units. ID-PALL should help professionals to discuss a suitable palliative care project, in order to maintain the best quality of life for patients and their relatives, and to involve palliative care specialists at the appropriate time. Recommendations for clinical practice are also proposed to guide professionals after the identification phase.

Que ce soit dans la population ou chez les professionnels de la santé, les soins palliatifs sont fréquemment associés à la fin de vie et au cancer. ID-PALL est un nouvel instrument court, facile d'utilisation, pour aider les professionnels à identifier les besoins de soins palliatifs généraux ou spécialisés chez les patients adultes hospitalisés dans les différents milieux de soins et déjà validé en médecine interne. ID-PALL devrait aider les professionnels à se mettre en discussion autour d'un projet de soins palliatifs adapté, afin de maintenir la meilleure qualité de vie possible pour les patients et leurs proches et également permettre d'appeler les spécialistes de soins palliatifs au moment opportun. Des recommandations pour la pratique clinique sont également proposées pour orienter les professionnels après la phase d'identification.

Instruments for the identification of patients in need of palliative care in the hospital setting: a systematic review of measurement properties.

OBJECTIVE: The objective of this review was to provide a comprehensive overview of the measurement properties of the available instruments used by clinicians for identifying adults in need of general or specialized palliative care in hospital settings. INTRODUCTION: Identification of patients in need of palliative care has been recognized as an area where many health care professionals need guidance. Differentiating between patients who require general palliative care and patients with more complex conditions who need specialized palliative care is particularly challenging. INCLUSION CRITERIA: We included development and validation studies that reported on measurement properties (eg, content validity, reliability, or responsiveness) of instruments used by clinicians for identifying adult patients (>18 years and older) in need of palliative care in hospital settings. METHODS: Studies published until March 2020 were searched in four databases: Embase.com, MEDLINE (Ovid), PubMed, and CINAHL (EBSCO). Unpublished studies were searched in Google Scholar, government websites, hospice websites, the Library Network of Western Switzerland, and WorldCat. The search was not restricted by language; however, only studies published in English or French were eligible for inclusion. The title and abstracts of the studies were screened by two independent reviewers against the inclusion criteria. Full-text studies were reviewed for inclusion by two independent reviewers. The quality of the measurement properties of all included studies were assessed independently by two reviewers according to the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology. RESULTS: Out of the 23 instruments identified, four instruments were included, as reported in six studies: the Center to Advance Palliative Care (CAPC) criteria, the Necesidades Paliativas (NECPAL), the Palliative Care Screening Tool (PCST), and the Supportive and Palliative Care Indicators Tool (SPICT). The overall psychometric quality of all four instruments was insufficient according to the COSMIN criteria, with the main deficit being poor construct description during development. CONCLUSIONS: For the early identification of patients needing palliative care in hospital settings, there is poor quality and incomplete evidence according to the COSMIN criteria for the four available instruments. This review highlights the need for further development of the construct being measured. This may be done by conducting additional studies on these instruments or by developing a new instrument for the identification of patients in need of palliative care that addresses the current gaps in construct and structural validity. SYSTEMATIC REVIEW REGISTRATION NUMBER: PROSPERO CRD42020150074.

ID-PALL: An Instrument to Help You Identify Patients in Need of Palliative Care.

Palliative care is frequently associated with the end of life and cancer. However, other patients may need palliative care, and this need may be present earlier in the disease trajectory. It is therefore essential to identify at the right time patients who need palliative care and to distinguish between those in need of general palliative care and those for whom a referral to specialists is required. ID-PALL has been developed as an instrument to support professionals in this identification and to discuss a suitable palliative care project, in order to maintain the best quality of life for patients and their relatives. Recommendations for clinical practice are also proposed to guide professionals after the identification phase.

Measurement Properties of ID-PALL, A New Instrument for the Identification of Patients With General and Specialized Palliative Care Needs.

CONTEXT: To improve access to palliative care, identification of patients in need of general or specialized palliative care is necessary. To our knowledge, no available identification instrument makes this distinction. ID-PALL is a screening instrument developed to differentiate between these patient groups. OBJECTIVE: To assess the structural and criterion validity and the inter-rater agreement of ID-PALL. METHODS: In this multicenter, prospective, cross-sectional study, nurses and physicians assessed medical patients hospitalized for 2 to 5 days in two tertiary hospitals in Switzerland using ID-PALL. For the criterion validity, these assessments were compared to a clinical gold standard evaluation performed by palliative care specialists. Structural validity, internal consistency and inter-rater agreement were assessed. RESULTS: 2232 patients were assessed between January and December 2018, 97% by nurses and 50% by physicians. The variances for ID-PALL G and S are explained by two factors, the first one explaining most of the variance in both cases. For ID-PALL G, sensitivity ranged between 0.80 and 0.87 and specificity between 0.56 and 0.59. ID-PALL S sensitivity ranged between 0.82 and 0.94, and specificity between 0.35 and 0.64. A cut-off value of 1 delivered the optimal values for patient identification. Cronbach's alpha was 0.78 for ID-PALL G and 0.67 for ID-PALL S. The agreement rate between nurses and physicians was 71.5% for ID-PALL G and 64.6% for ID-PALL S. CONCLUSION: ID-PALL is a promising screening instrument allowing the early identification of patients in need of general or specialized palliative care. It can be used by nurses and physicians without a specialized palliative care training. Further testing of the finalized clinical version appears warranted.

Assessing the Will to Live: A Scoping Review.

CONTEXT: The will to live (WTL) is an important factor to consider in the context of providing resource-oriented palliative care. Until now, there has been no major review of the existing research on this subject. OBJECTIVES: The primary objective of this study is to summarize the state of research concerning instruments that assess the WTL. The secondary objective is to explore the theoretical models and psychometric properties of these instruments, in studies where these instruments were initially presented. The tertiary objective is to identify, among all studies where these instruments have been used, the intensity of the WTL, and factors associated with it. METHODS: We conducted a scoping review, including studies that were designed to assess the WTL among participants in all settings. Records were systematically searched from seven bibliographic databases with no date limitations up to August 2020. RESULTS: Of the 3078 records screened, 281 were examined in detail and 111 were included in the synthesis. A total of 25 different instruments quantitatively assessing the WTL are presented. Most are single-question tools and rate intensity. The underlying concepts and psychometric properties are incompletely explained. Lack of crossreferencing is apparent. The intensity of the WTL is high, even among people with significant health impairment, and is frequently associated with different factors, such as resilience and quality of life. CONCLUSION: A considerable yet unconnected body of studies assesses the WTL. Its assessment in clinical routine could promote resource-oriented and patient-centered care.

Instruments for the identification of patients in need of palliative care: protocol for a systematic review of measurement properties.

OBJECTIVE: The objective of this review is to provide a comprehensive overview of the psychometric properties of available clinician-reported instruments developed to identify patients in need of general and specialized palliative care in acute care settings. INTRODUCTION: Identification of patients in need of palliative care has been recognized as an area where many health care professionals need guidance. Differentiating between patients who require general palliative care and patients with more complex conditions who need specialized palliative care is particularly challenging. To our knowledge, no dedicated instruments are available to date to assist health care professionals to make this identification. INCLUSION CRITERIA: Included studies will report on i) instruments aiming to identify patients in need of palliative care, ii) adult patients in need of palliative care in acute-care settings, iii) clinician-reported outcome measures, or iv) the development process or one or more of its measurement properties. Studies conducted in intensive care units, emergency departments, or nursing homes will be excluded. METHODS: We will search for studies published in English and French in a variety of sources, including Embase, Medline Ovid SP, PubMed, CINAHL EBSCO, Google Scholar, government websites, and hospice websites. All citations will be screened and selected by two independent reviewers. Data extraction, quality assessment, and syntheses of included studies will be performed according to the COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN) criteria. SYSTEMATIC REVIEW REGISTRATION NUMBER: PROSPERO CRD42020150074.

IDentification of patients in need of general and specialised PALLiative care (ID-PALL©): item generation, content and face validity of a new interprofessional screening instrument.

BACKGROUND: Early identification of patients requiring palliative care is a major public health concern. A growing number of instruments exist to help professionals to identify these patients, however, thus far, none have been thoroughly assessed for criterion validity. In addition, no currently available instruments differentiate between patients in need of general vs. specialised palliative care, and most are primarily intended for use by physicians. This study aims to develop and rigorously validate a new interprofessional instrument allowing identification of patients in need of general vs specialised palliative care. METHODS: The instrument development involved four steps: i) literature review to determine the concept to measure; ii) generation of a set of items; iii) review of the initial set of items by experts to establish the content validity; iv) administration of the items to a sample of the target population to establish face validity. We conducted a Delphi process with experts in palliative care to accomplish step 3 and sent a questionnaire to nurses and physicians non-specialised in palliative care to complete step 4. The study was conducted in the French and Italian-speaking regions of Switzerland. An interdisciplinary committee of clinical experts supervised all steps. RESULTS: The literature review confirmed the necessity of distinguishing between general and specialised palliative care needs and of adapting clinical recommendations to these different needs. Thirty-six nurses and physicians participated in the Delphi process and 28 were involved in the face validity assessment. The Delphi process resulted in two lists: a 7-item list to identify patients in need of general PC and an 8-item list to identify specialised PC needs. The content and face validity were deemed to be acceptable by both the expert and target populations. CONCLUSION: This instrument makes a significant contribution to the identification of patients with palliative care needs as it has been designed to differentiate between general and specialised palliative care needs. Moreover, diagnostic data is not fundamental to the use of the instrument, thus facilitating its use by healthcare professionals other than physicians, in particular nurses. Internal and criterion validity assessments are ongoing and essential before wider dissemination of the instrument.

Validation of the French Version of the Integrated Palliative Care Outcome Scale.

CONTEXT: The Integrated Palliative care Outcome Scale (IPOS) is a widely used tool for assessing patient needs in palliative care. OBJECTIVES: The aim of this study was to provide a validated version of the patient and staff IPOS for French-speaking Switzerland (IPOS-Fr) and assess its psychometric properties. METHODS: The validation took place in 12 palliative care units and mobile teams. At baseline (T1) and three days later (T2), patients' general health status, palliative care needs (IPOS-Fr), and quality of life (McGill Quality of Life Scale-Revised) were assessed by patients and staff. RESULTS: We included 173 patients (mean age: 68.8; 92 women; 85% oncologic disease). IPOS internal consistency was high for the total score (0.69 and 0.71). Staff-patient interrater agreement was good to moderate for 13 items (intraclass correlations >0.516). Results indicated strong correlations between IPOS-Fr and McGill Quality of Life Scale-Revised for the total score (-0.623 at T1) and the psychological domain (Item 11: -0.601 at T1; Item 13: -0.633 at T2). Regarding sensitivity to change, there was a significant difference between T1 and T2 for patients with an improved health condition (z = -2.326; P = 0.020). CONCLUSION: IPOS-Fr has fair to good validity, especially with regard to interrater agreement and construct validity, is sensitive to positive change, and has good interpretability and acceptability for patients and staff. IPOS-Fr is not optimal in terms of internal consistency and structure when using subscale scores, except for the emotional subscale.

Challenges in a six-phase process of questionnaire adaptation: findings from the French translation of the Integrated Palliative care Outcome Scale.

BACKGROUND: The Integrated Palliative care Outcome Scale (IPOS) was developed for evaluating essential outcomes for palliative care patients. Our objectives here are to describe the process of a six-phase cross-cultural adaptation of IPOS to French (IPOS-Fr), highlight the difficulties encountered and strategies to solve them, and discuss the implications that adaptation may have on the validity and reliability of a questionnaire. METHODS: The adaptation of IPOS consisted of six phases: (i) literature review and interviews with target population; (ii) forward translation to French; (iii) backward translation to English; (iv) Expert Review; (v) cognitive interviews with target population; (vi) final review. RESULTS: Translation, cognitive interviews, and exchanges with Expert Review members allowed to make changes adapted to the target language regarding item 5 ("vomiting") and 8 ("sore or dry mouth"), and to identify and address, in the original version of IPOS, syntactic inconsistencies in language used in items 11 to 15 and methodological problems with items 11 ("anxiety about treatment and illness"), 15 ("share … as much as you wanted") and 17 ("problems addressed"). The adaptation also indicated that patients might have difficulties in interpreting items 8 ("sore or dry mouth"), 10 ("poor mobility"), 11 ("anxiety"), 12 (projected feelings of family and friends), and 14 ("feeling at peace"), thus indicating the need of monitoring during the psychometric validation. CONCLUSIONS: Following this process, IPOS-Fr has proved content and face validity. In our case, the adaptation allowed adjustments to be made to the questionnaire and, when this was not possible, highlighted potential biases and inconsistencies during the validation. The result relied on an intertwined and iterative process of seeking and reaching semantic, conceptual, and normative equivalence. We are now assessing the psychometrical properties of IPOS-Fr.

Gratitude at the End of Life: A Promising Lead for Palliative Care.

BACKGROUND: Numerous studies, conducted largely with non-clinical populations, have shown a significant link between gratitude and psychological dimensions relevant for palliative care (e.g., psychological distress). However, the relevance of gratitude in the context of palliative care needs to be confirmed. OBJECTIVES: We strived to evaluate the association between gratitude and quality of life (QoL), psychological distress, post-traumatic growth, and health status in palliative patients, and to develop an explanatory model for QoL. An ancillary purpose was to identify which life domains patients considered sources of gratitude. DESIGN: We performed an exploratory and cross-sectional study with palliative patients of the Lausanne University Hospital. MEASUREMENTS: We used the Gratitude Questionnaire, the McGill Quality of Life questionnaire revised, the Hospital Anxiety and Depression Scale, the Post-traumatic Growth Inventory, and the health status items of the Eastern Cooperative Oncology Group. Spearman correlations and multivariate analyses were performed. RESULTS: Sixty-four patients participated (34 women, mean age = 67). The results showed significant positive correlations between gratitude and QoL (r = 0.376), and the appreciation of life dimension of the post-traumatic growth (r = 0.426). Significant negative correlations were found between gratitude and psychological distress (r = -0.324), and health status (r = -0.266). The best model for QoL explained 47.6% of the variance (F = 26.906) and included psychological distress and gratitude. The relational dimension was the most frequently cited source of gratitude (61%). CONCLUSION: Gratitude may act positively on QoL and may protect against psychological distress in the palliative situation. The next step will be the adaptation and implementation of a gratitude-based intervention.

[Identification of palliative care patients :issues and screening tools]. / Identification des patients palliatifs : enjeux et outils de dépistage.

From a health care perspective, and in order to improve the quality of care, early identification of palliative patients is a necessary step for the development of palliative care. Unfortunately, this early identification is still sub-optimal, resulting in a delayed introduction of palliative care in the patients' health care pathway. Although several tools exist to support health care professionals in this endeavour, their level of validity is incomplete, and they do not distinguish between patients in need of general versus specialised palliative care. A new tool which strives to better answer these criteria is presently being developed and validated at the CHUV.

Dans une perspective de santé publique et dans le but d'améliorer la qualité des soins, le développement des soins palliatifs passe par l'identification précoce des patients nécessitant ce type d'accompagnement. Celle-ci reste pourtant encore suboptimale, avec comme conséquence une mise en œuvre trop tardive des soins palliatifs dans la trajectoire de maladie des personnes. Différents outils existent pour soutenir les professionnels dans cette pratique même si ceux-ci ont encore un niveau de validité incomplet et ne permettent pas de distinguer les patients nécessitant des soins palliatifs généraux versus spécialisés. Un outil qui répond mieux à ces critères est en phase de développement et de validation au CHUV.

[Assessment of the impact of a palliative care support team in a tertiary hospital]. / Evaluation de l'impact d'une équipe mobile palliative intrahospitalière dans un hôpital tertiaire.

This study aimed to measure the effectiveness of the interventions of a palliative care support team in a tertiary hospital. It used a pre-post design and included 41 patients. The results show a significant improvement of the quality of palliative care as well as a significant reduction in the intensity and in the number of moderate to severe symptoms. The importance of a palliative care support team in a tertiary hospital is confirmed by our results. Its interventions appear to respond to the growing need for specialized palliative care, particularly in patients with complex clinical problems.

Cette étude avait pour objectif de mesurer l'efficacité des interventions d'une équipe palliative intrahospitalière d'un hôpital tertiaire. Elle a été menée selon un design pré-post-intervention auprès de 41 patients. Elle a montré une amélioration significative de la qualité de la prise en charge palliative et une diminution significative de l'intensité ainsi que du nombre de symptômes moyens à sévères. Nos résultats démontrent la pertinence des interventions d'une équipe palliative intrahospitalière dans un hôpital tertiaire. Ces interventions semblent ainsi répondre aux besoins croissants de soins palliatifs spécifiques s'adressant principalement à des patients présentant des problématiques cliniques complexes.

Relationship Between Spirituality, Meaning in Life, Psychological Distress, Wish for Hastened Death, and Their Influence on Quality of Life in Palliative Care Patients.

CONTEXT: Spiritual, existential, and psychological issues represent central components of quality of life (QOL) in palliative care. A better understanding of the dynamic nature underlying these components is essential for the development of interventions tailored to the palliative context. OBJECTIVES: The aims were to explore 1) the relationship between spirituality, meaning in life, wishes for hastened death and psychological distress in palliative patients and 2) the extent to which these nonphysical determinants influence QOL. METHODS: A cross-sectional study involving face-to-face interviews with Swiss palliative patients was performed, including the Schedule for Meaning in Life Evaluation (SMILE), the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp), the Idler Index of Religiosity (IIR), the Hospital Anxiety and Depression Scale (HADS), and the Schedule of Attitudes toward Hastened Death (SAHD). QOL was measured with a single-item visual analogue scale (0-10). RESULTS: Two hundred and six patients completed the protocol (51.5% female; mean age = 67.5 years). The results indicated a significant negative relationship between FACIT-Sp/SMILE and HADS total scores (P = 0.000). The best model for QOL explained 32.8% of the variance (P = 0.000) and included the FACIT-Sp, SMILE, and SAHD total scores, the IIR "private religiosity" score, as well as the HADS "depression" score. CONCLUSION: Both spiritual well-being and meaning in life appear to be potential protective factors against psychological distress at the end of life. Since nonphysical determinants play a major role in shaping QOL at the end of life, there is a need for the development of meaning-oriented and spiritual care interventions tailored to the fragility of palliative patients.

Validation of the French Version of the Edmonton Symptom Assessment System.

CONTEXT: The Edmonton Symptom Assessment System (ESAS) is a brief, widely adopted, multidimensional questionnaire to evaluate patient-reported symptoms. OBJECTIVES: The objective of this study was to define a standard French version of the ESAS (F-ESAS) to determine the psychometric properties in French-speaking patients. METHODS: In a first pilot study, health professionals (n = 20) and patients (n = 33) defined the most adapted terms in French (F-ESAS). In a prospective multicentric study, palliative care patients completed the three forms of F-ESAS (F-ESAS-VI, F-ESAS-VE, and F-ESAS-NU, where VI is visual, VE, verbal, and NU, numerical), the Hospital Anxiety and Depression Scale. All patients had a test-retest evaluation during the same half-day. Standardized distraction material was used between each scale. RESULTS: One hundred twenty-four patients were included (mean age [±SD]: 68.3 ± 12; 70 women; 54 men). Test-retest reliability was high for all three F-ESAS, and the correlation between these scales was nearly perfect (Spearman rs = 0.66-0.91; P < 0.05). F-ESAS-VI, F-ESAS-VE, and F-ESAS-NU performed similarly and were equally reliable, although there was a trend toward lower reliability for F-ESAS-VI. Correlation between F-ESAS depression and anxiety and HADS depression and anxiety, respectively, were positive (Spearman rs = 0.38-0.41 for depression; Spearman rs = 0.48-0.57 for anxiety, P < 0.05). Among patients, 59 (48%), 45 (36%), and 20 (16%) preferred to assess their symptoms with F-ESAS-VE, F-ESAS-NU, and F-ESAS-VI, respectively. CONCLUSION: The F-ESAS is a valid and reliable tool for measuring multidimensional symptoms in French-speaking patients with an advanced cancer. All forms of F-ESAS performed well with a trend for better psychometric performance for F-ESAS-NU, but patients preferred the F-ESAS-VE.

Meaning in life and perceived quality of life in Switzerland: results of a representative survey in the German, French and Italian regions.

BACKGROUND: The concept of meaning in life (MIL) has become a central one in recent years, particularly in psycho-oncology and palliative care. The Schedule for Meaning in Life Evaluation (SMILE) has been developed to allow individuals to choose the life areas that they consider to be important for their own MIL. This approach relates to the "World Health Organisation" definition of quality of life (QOL) as an individual's perception of his own position. The aims of this study were (i) to assess MIL in a representative sample of the Swiss population according to the three linguistic regions and (ii) to evaluate whether MIL constitutes a significant determinant of the perceived QOL. METHODS: A telephone survey of the Swiss population, performed by a professional survey company, was conducted between November and December 2013. The interview included the SMILE, perceived QOL (0-10) and health status (1-5), and various sociodemographic variables. In the SMILE, an index of weighting (IOW, 20-100), an index of satisfaction (IOS, 0-100), and a total SMILE index (IOWS, 0-100) are calculated from the areas mentioned by the participants as providing MIL. RESULTS: Among the 6671 telephonic contacts realized, 1015 (15%) participants completed the survey: 405 French, 400 German and 210 Italian participants. "Family" (80.2%), "occupation/work" (51%), and "social relations" (43.3%) were the most cited MIL-relevant categories. Italian participants listed "health" more frequently than German and French participants (50.4% vs 31.5% and 24.8% respectively, χ(2) = 12.229, p = .002). Age, gender, education, employment, and marital status significantly influenced either the MIL scores or the MIL-relevant categories. Linear regression analyses indicate that 24.3% of the QOL variance (p = .000) is explained by health status (B = .609, IC = .490-.728, p = .000), MIL (B = .034, IC = .028-.041, p = .000) and socioeconomic status (F = 11.01, p = .000). CONCLUSION: The major finding of our analysis highlights the positive and significant influence of MIL on the perceived QOL in a representative sample of a general, multilingual and multicultural population. This result indicates that the existential dimension is not only determinant for QOL in some critical life events, as shown e.g. in psycho-oncology and palliative care, but also in everyday life.