CONTEXT: The will to live 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 will to live. 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 will to live and factors associated with it.
METHODS: We conducted a scoping review, including studies that were designed to assess the will to live 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 will to live are presented. Most are single-question tools and rate intensity. The underlying concepts and psychometric properties are incompletely explained. Lack of cross-referencing is apparent. The intensity of the will to live 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 will to live. Its assessment in clinical routine could promote resource-oriented, patient-centered care.
BACKGROUND AND OBJECTIVES: Meaning in life (MIL) represent a key topic in palliative care. The aims of this study were to explore (1) the differences in perceived MIL and in the meaning-relevant life areas between a representative sample of the Swiss population and palliative care patients, and (2) to what extent MIL can be considered as a significant predictor of quality of life (QOL).
METHODS: A cross-sectional study was conducted separately for the patients (face-to-face interviews) and the general population (telephone survey). MIL was measured with the Schedule for Meaning in Life Evaluation (SMILE) and QOL with a single-item visual analogue scale (0-10). Sociodemographic variables were controlled for in the analyses.
RESULTS: 206 patients and 1015 participants from the Swiss population completed the protocol. Results indicated high MIL scores in both populations even if the difference was significant (patients 81.9 vs general population 87, p<0.001). Patients were more likely to cite 'family' (OR=1.78), 'social relations' (OR=1.9), 'spirituality and religion' (OR=3.93), 'social commitment' (OR=1.94) and 'growth' (OR=2.07), and less likely to cite 'finances' (OR=0.15) and 'health' (OR=0.21) as MIL-relevant areas. The SMILE scores and MIL areas explained 21.8% of the QOL variance for the patients and 15.1% for the representative sample.
CONCLUSIONS: Our data emphasise the importance of MIL as a contributor to QOL in both populations. It highlights the importance of the life areas contributing to MIL, especially social interactions for both populations, and spirituality and areas related to growth in palliative care patients.
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 is 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-MQOL-R) 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 (.69 and .71). Staff-patient inter-rater agreement was good to moderate for 13 items (intra-class correlations >.516). Results indicated strong correlations between IPOS-Fr and MQOL-R for the total score (-.623 at T1) and the psychological domain (item 11:-.601 at T1; item 13: -.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=.020).
CONCLUSION: IPOS-Fr has fair to good validity, especially with regard to inter-rater 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.
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.
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.
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. (R.A.).
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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.13
CONTEXT: The Edmonton Symptom Assessment System is a brief, widely adopted, multidimensional questionnaire to evaluate patient-reported symptoms.
OBJECTIVES: 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; VE; NU), the Hospital Anxiety and Depression Scale (HADS). All patients had a test-retest evaluation during the same half-day. Standardized distraction material was used between each scale. RESULTS: 124 patients were included (mean age (±SD): 68.3 ±12; 70F; 54 M). Test retest reliability was high for all 3 F-ESAS and the correlation between these scales was nearly perfect (Spearman rs=0.66-0.91; p< 0.05). F-ESAS-VI, VE and NU performed similarly and were equally reliable, although there was a trend towards lower reliability for F-ESAS-VI. Correlation between respectively F-ESAS depression and anxiety and HADS depression and anxiety were positive (Spearman rs=0.38-0.41 for depression; Spearman rs=0.48-0.57 for anxiety p< 0.05). Among patients, respectively 59 (48 %), 45 (36%) and 20 (16 %) preferred to assess their symptoms with F-ESAS-VE, F-ESAS-NU and F-ESAS-VI.
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.
CONTEXT: Spiritual, existential, and psychological issues represent central components of quality of life (QOL) in palliative care. A better understanding of the dynamic underlying these components is essential for the development of interventions tailored to the palliative context. OBJECTIVES: The aims were to explore (i) the relationship between spirituality, meaning in life, wishes for hastened death and psychological distress in palliative patients, and (ii) the extent to which these non-physical 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 Spiritual Subscale of the Functional Assessment of Chronic Illness Therapy (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: 206 patients completed the protocol (51.5% female; mean age=67.5 yrs). The results indicated a significant negative relationship between FACIT-Sp/SMILE and HADS total scores (p=.000). The best model for QOL explained 32.8 % of the variance (p=.000) and included the FACIT-Sp, SMILE, and SAHD total scores, the IIR "private religiosity" subscale, 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 non-physical 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.