OBJECTIVE: Dependency on others can compromise self-determination for older persons in the palliative phase in residential care. Family members can support the residents' self-determination but may also jeopardize it. Quality of care (QoC) is linked to respecting the autonomy of the residents and providing opportunities to participate in decision-making. The aim of the study was to provide knowledge about residents' and family members' perceptions of QoC and self-determination and to detect possible differences between their experiences.
METHOD: This cross-sectional study used an abbreviated version of the questionnaire, Quality from the Patients' Perspective, with additional items about decision-making. Wilcoxon's signed rank test was used to analyze the perception of QoC and to detect differences between residents' and family members' perceptions.
RESULT: QoC was perceived as lower than preferred in the majority of items and there was a high level of agreement between residents and family members. Lowest mean values in QoC were found in: support when feeling lonely; support when feeling worry, anxiety or fear; and staff's time to talk to the residents. Decision-making in everyday life and in life-changing situations showed that neither residents nor family members trusted staff to know about the residents' preferences.
SIGNIFICANCE OF RESULTS: Broad improvements are needed, especially in psychosocial care. Several of the negative outcomes on QoC and self-determination seem to derive from a focus on practical tasks and the lack of trustful relationships between residents and staff. An early implementation of palliative care, with a focus on what brings quality to each resident's life, could facilitate QoC and self-determination, in both everyday life and at the end of life.
Informal hospice caregivers often have difficulty managing patient pain at home. We developed a digital application, e-Pain Reporter, for informal caregivers to record and providers to monitor patient pain and pain management. The purpose of this study was (1) to assess the feasibility of informal caregivers using the e-Pain Reporter for 9 days in home hospice by investigating recruitment and retention and caregiver satisfaction with and frequency of use of the e-Pain Reporter and (2) describe patient pain characteristics and caregiver’s barriers to pain management and self-efficacy in providing patient care in the home. One-group pre-post design was used. Patient-caregiver dyads were recruited from 1 hospice agency. Caregivers were asked to report all patient pain and pain management using the e-Pain Reporter. Feasibility of the e-Pain Reporter was assessed by the average number of times caregivers recorded breakthrough and daily pain and caregiver satisfaction with the app. The 27-item Barriers Questionnaire II and 21-item Caregiver Self-efficacy Scale were administered at baseline. Fourteen dyads enrolled, 2 patients died, and 12 dyads completed the study. Mean number of pain reports over 9 days was 10.5. Caregivers reported high overall satisfaction with the e-Pain Reporter. Barriers scores were moderately high, suggesting erroneous beliefs and misconceptions about pain reporting and use of analgesics, but self-efficacy in managing pain was also high (93% confidence). Findings suggest that the e-Pain Reporter is a feasible method to report and monitor caregiver management of pain at home. Caregiver high barriers and high overconfidence suggest the need for an educational component to the e-Pain Reporter to address misconceptions about pain and pain management.
PURPOSE: The identification and referral of patients in need of palliative care should be improved. The French society for palliative support and care recommended to use the PALLIA-10 questionnaire and its score greater than 3 to refer patients to palliative care. We explored the use of the PALLIA-10 questionnaire and its related score in a population of advanced cancer patients.
METHODS: This prospective multicentric study is to be conducted in authorized French comprehensive cancer centers on hospitalized patients on a given day. We aimed to use the PALLIA-10 score to determine the proportion of palliative patients with a score >3. Main secondary endpoints were to determine the proportion of patients already managed by palliative care teams at the study date or referred to palliative care in six following months, the prevalence of patients with a score greater than 5, and the overall survival using the predefined thresholds of 3 and 5.
RESULTS: In 2015, eighteen French cancer centers enrolled 840 patients, including 687 (82%) palliative patients. 479 (69.5%) patients had a score >3, 230 (33.5%) had a score >5, 216 (31.4%) patients were already followed-up by a palliative care team, 152 patients were finally referred to PC in the six subsequent months.
The PALLIA-10 score appeared as a reliable predictive (adjusted ORRef=3: 1.9 [1.17-3.16] and 3.59 [2.18-5.91]) and prognostic (adjusted HRRef=3 = 1.58 [95%CI 1.20-2.08] and 2.18 [95%CI 1.63-2.92]) factor for patients scored 4-5 and >5, respectively.
CONCLUSION: The PALLIA-10 questionnaire is an easy-to-use tool to refer cancer inpatients to palliative care in current practice. However a score greater than 5 using the PALLIA-10 questionnaire would be more appropriate for advanced cancer patients hospitalized in comprehensive cancer center.
Introduction: Collusion is frequently encountered but least studied entity in palliative care services in India. Impact of collusion is manifold and identifying it requires good communication skills. Once identified, it gives an indication for existing healthy versus developing unhealthy collusion to be dealt within families.
Objective: The objective of this study was to identify the prevalence of collusion and its clinical and psychological correlates among patients and caregivers in a palliative cancer care.
Materials and Methods: We describe systematic identification and unraveling of collusion across multiple levels in a palliative cancer care eventually drafting an algorithm to unravel the collusion. Patients and families were recruited from in-patient palliative care services after obtaining written informed consent. Qualitative interviews were conducted using collusion questionnaire, EQ5D, Visual Analog Scale, and NIMHANS psychiatric morbidity screen.
Results: Among 62 cancer families interviewed, we identified that 71% collusion exists between doctor and patient, 61.3% between doctor and caregiver, and 75.83% between patient and caregiver. Around 50% collusions were unraveled systematically. Collusion was more prevalent in patients with rapid progression of illness (<6 months), patients with poor coping skills, and preference of being interviewed alone.
Conclusion: This statistics suggests that collusion goes unnoticed in terminal illnesses and communication skills play a major role in identifying and dealing with collusion. This also unearths need to formulate interview techniques and structured assessment tools or questionnaire in palliative cancer care which are sparse.
OBJECTIVE: The study of predeath grief is hampered by measures that are often lengthy and not clearly differentiated from other caregiving outcomes, most notably burden. We aimed to validate a new 11-item Caregiver Grief Questionnaire (CGQ) assessing two dimensions of predeath grief, namely relational deprivation and emotional pain.
DESIGN: Cross-sectional survey.
SETTING: Community and psychogeriatric clinics.
PARTICIPANTS: 173 Alzheimer (AD) caregivers who cared for relatives with different degrees of severity (63 mild, 60 moderate, and 50 severe).
MEASUREMENTS: Besides the CGQ, measures of caregiver burden and depressive symptoms, and care-recipients' neuropsychiatric symptoms and functional impairment were assessed.
RESULTS: Confirmatory factor analysis supported the hypothesized 2-factor over the 1-factor model, and both subscales were only moderately correlated with burden. Two-week test-retest reliabilities were excellent. Caregivers for mild AD reported less grief than those caring for more severe relatives. Z tests revealed significantly different correlational patterns for the two dimensions, with emotional pain more related to global burden and depressive symptoms, and relational deprivation more related to care-recipients' functional impairment. Both dimensions were mildly correlated with neuropsychiatric symptoms (especially disruptive behaviors and psychotic symptoms) of the care-recipient.
CONCLUSIONS: Results supported the reliability and validity of the two-dimensional measure of predeath grief. As a brief measure, it can be readily added to research instruments to facilitate study of this important phenomenon along with other caregiving outcomes.
Background: Moral distress is a frequent phenomenon in end-of-life care. It occurs when one knows the morally correct response to an ethically challenging situation, but cannot act because of internal or external constraints. Medical students-having a perceived low level in the hospital hierarchy-may be particularly vulnerable to moral distress.
Objective: To assess the frequency and intensity of medical students' moral distress occurring in end-of-life care.
Design: We developed a questionnaire describing 10 potentially morally distressing scenarios in end-of-life care.
Setting: The questionnaire was distributed to all fourth-year students of a German medical school.
Measurements: We asked students (1) if they had ever witnessed the described scenarios and (2) to rate the extent (numeric rating scale 0-4) of moral distress for each situation.
Results: Of 340 students, 217 (64%) completed the survey. On average, students had experienced 2.51 morally distressing situations (standard deviation = ±2.23). The majority of students (N = 163, 75%) had experienced at least one morally distressing situation. Providing futile care with the basic intention to make money was the item with the highest levels of experienced distress (2.88 ± 1.05), witnessed by 54 (25%) participants. Twenty-five students (12%) reported that they had thought about dropping out of medical school or choosing a nonclinical specialty because of moral distress.
Conclusions: Medical students experience moral distress regularly and most frequently in scenarios of futile care. This may be an underestimated factor for medical school attrition. Interventions should identify the sources of moral distress and empower students to address their moral concerns.
AIM: Identify the palliative care learning needs of healthcare students and determine the acceptability of an innovative learning strategy for palliative care named competencia para cuidar en el hogar-paliar (CUIDAR-PALIAR) aimed to increase students' competencies.
METHODS: A single-group mixed methods design was used. A questionnaire was designed and semi-structured interviews were used to determine the palliative care competencies of undergraduate students; 90 students participated in the strategy.
FINDINGS: The learning needs of students are: approaches to death and loss, how to intervene with the patient's family, understanding of the palliative care context, management of the patient's pain and symptoms and the development of therapeutic communication skills.
CONCLUSION: The strategy is highly accepted by students, and statistically significant increases in palliative care were observed before and after the intervention. These preliminary results justify future interventions due to the potential effect of the strategy CUIDAR-PALIAR in the development of competencies for palliative care in undergraduate students.
This study develops and examines the validity and reliability of 2 scales, respectively, for evaluating nursing care and the experience of difficulties providing nursing care for dying patients with cancer and their families. A cross-sectional anonymous questionnaire was administered to nursing staff caring for dying patients with cancer and their families in 4 general hospitals and a university hospital in Japan. The instruments assessed were the Nursing Care Scale for Dying Patients and Their Families (NCD) and the Nurse’s Difficulty Scale for Dying Patients and Their Families (NDD). Of the 497 questionnaires sent to nurses, 401 responses (80%) were analyzed. Factor analyses revealed that the NCD and NDD consisted of 12 items with 4 subscales: "symptom management," "reassessment of current treatment and nursing care," "explanation to family," and "respect for the patient and family’s dignity before and after death." These scales had sufficient convergent and discriminative validity, sufficient internal consistency (alpha of subscales: NCD, 0.71-0.87; NDD, 0.74-0.93), and sufficient test-retest reliability (intraclass correlation coefficient of subscales: NCD, 0.59-0.81; NDD, 0.67-0.82) to be used as self-assessments and evaluation tools in education programs to improve the quality of nursing care for the dying patients and their families.
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.
Introduction: Du fait de la toxicité veineuse périphérique des produits utilisés, la pose d’une chambre implantable s’intègre dans la prise en charge globale d’un patient devant bénéficier d’une chimiothérapie anticancéreuse curative ou palliative. Si ce geste peut apparaître anodin car réalisé quotidiennement, il reste souvent un élément marquant dans l’histoire du patient du fait de son retentissement tant physique que psychologique. Le but de cette étude était d’évaluer le niveau d’anxiété préopératoire et la satisfaction des patients ayant bénéficié de cette intervention.
Méthodes: Nous avons mené une étude monocentrique rétrospective basée sur un questionnaire comportant 28 questions à choix multiples et une question libre. Le questionnaire a été envoyé par voie postale à l’ensemble des patients ayant bénéficié de la pose d’une chambre implantable entre le 01/01/2016 et le 31/12/2016. Les questions exploraient les phases préopératoire (anxiété et information), peropératoire (douleur et prise en charge) et postopératoire (douleur, prise en charge et satisfaction).
Résultats: Quarante-huit questionnaires ont été reçus et analysés ce qui représente un taux de participation de 40 %. Trente-quatre patients (70 %) étaient des femmes. L’âge moyen était de 60±19 ans. Pour 35 patients (73 %), il s’agissait de leur première intervention de ce type. Avant l’opération, le niveau médian d’anxiété était estimé à 5/10 [extrêmes : 2–8]. Quarante-deux patients (88 %) avaient reçu une information préalable à la réalisation du geste avec un niveau médian de satisfaction par rapport à cette information de 9/10 [extrêmes : 8–10]. La qualité médiane de l’accueil en salle d’opération était estimée à 9/10 [extrêmes : 8–10], la qualité du séjour peropératoire à 10/10 [extrêmes : 8–10] et le niveau médian d’anxiété au décours du geste à 1/10 [extrêmes : 0–5]. Douze patients (25 %) ont ressenti des douleurs d’une intensité moyenne cotée à 1±2/10 sur l’échelle numérique. Après l’intervention, 19 patients (40 %) ont ressenti des douleurs d’une intensité médiane cotée à 2/10 [extrêmes : 0–5] sur l’échelle numérique et traitées par des antalgiques de niveau 1 dans 100 % des cas. La satisfaction médiane vis-à-vis de l’accompagnement au cours du séjour hospitalier pour la mise en place de la chambre implantable a été évaluée à 9/10 [extrêmes : 8–10], à 10/10 [extrêmes : 8–10] pour la prise en charge anesthésique et à 9/10 [extrêmes : 7–10] pour la prise en charge globale au cours du séjour hospitalier.
Discussion: La mise en place d’une chambre implantable pour une chimiothérapie anticancéreuse reste un événement marquant dans l’histoire d’un patient, source d’anxiété préopératoire marquée. La satisfaction globale des patients quant à leur parcours de soin est bonne mais pourrait encore être améliorée. Une bonne relation "soignant–soigné" à toutes les étapes de la prise en charge et une fluidification du parcours de soins du patient sont probablement les éléments devant permettre d’améliorer plus encore la satisfaction des patients.
Objective: The current study was conducted aiming at the investigation of pain beliefs and perceptions and their relationship with coping strategies, stress, anxiety, and depression in patients with cancer.
Materials and Methods: Study design: This was a descriptive-correlational and cross-sectional study. Data collection tools - Demographic questionnaire, Pain Beliefs and Perceptions Inventory, Pain Coping Strategies Questionnaire (Rosenstiel and Keefe), and Depression, Anxiety, and Stress Scale were used in this study. The dataset was analyzed using descriptive and infreretial statistics that included the chi-square and one-way ANOVA with software SPSS v.16 analysis.
Results: Findings of the study indicated that the most common belief about pain in patients is pain permanence. In addition, the most commonly used strategies for coping pain in patients were praying/hoping (25.82 ± 7.86) and self-statements (22.3 ± 10.34). Results indicated that there is a significant difference between pain coping strategies and pain control (P = 0.02). No significant difference was observed between the pain beliefs and the coping strategies (P = 0.15). Depression and anxiety level of patients was estimated as moderate, and their stress was estimated as mild. It was specified that there is a significant difference between self-blame belief and depression of patients (P = 0.01).
Conclusion: Understanding and identifying emotional-psychological variables in patients with chronic pains may provide a basis for implementing educational cognitive-behavioral programs for patients and the ground for increasing the ability to control the pain in nonpharmacological methods leading to promoting quality of life in these patients.
Objective: Healthcare professionals who work in palliative care units face stressful life events on a daily basis, most notably death. For this reason, these professionals must be equipped with the necessary protective resources to help them cope with professional and personal burnout. Despite the well-recognized importance of the construct "meaning of work," the role of this construct and its relationship with other variables is not well-understood. Our objective is to develop and evaluate a model that examines the mediating role of the meaning of work in a multidisciplinary group of palliative care professionals. Using this model, we sought to assess the relationships between meaning of work, perceived stress, personal protective factors (optimism, self-esteem, life satisfaction, personal growth, subjective vitality), and sociodemographic variables.
Method: Professionals (n = 189) from a wide range of disciplines (physicians, psychologists, nurses, social workers, nursing assistants, physical therapists, and chaplains) working in palliative care units at hospitals in Madrid and the Balearic Islands were recruited. Sociodemographic variables were collected and recorded. The following questionnaires were administered: Meaning of Work Questionnaire, Perceived Stress Questionnaire, Life Orientation Test-Revised, Satisfaction with Life Scale, Subjective Vitality Scale, Rosenberg Self-Esteem Scale, and the Personal Growth Scale.
Result: The explanatory value of the model was high, explaining 49.5% of the variance of life satisfaction, 43% of subjective vitality, and 36% of personal growth. The main findings of this study were as follow: (1) meaning of work and perceived stress were negatively correlated; (2) optimism and self-esteem mediated the effect of stress on the meaning attached to work among palliative care professionals; (3) the meaning of work mediated the effect of stress on subjective vitality, personal growth, and life satisfaction; and (4) vitality and personal growth directly influenced life satisfaction.
Significance of results: The proposed model showed a high explanatory value for the meaning professionals give to their work and also for perceived stress, personal protective factors, and sociodemographic variables. Our findings could have highly relevant practical implications for designing programs to promote the psychological well-being of healthcare professionals.
When patients face advanced illness, their experience of care is especially important. In palliative care, we often rely on the accounts of bereaved relatives to report the quality of end-of-life care, and there are no validated patient-reported measures of the experience of care. We report therefore on a new questionnaire, Views on Care (VOC), to address this gap. It consists of four questions (see the following link for full questionnaire: www.pos-pal.org) selected/refined from St Christopher’s Index of Patient Priorities (SKIPP)1, which address patients’ evaluation of (1) change in their main concerns, (2) benefit from palliative services, (3) previous and (4) current quality of life (3 and 4 adapted from EORTC QLQ-C15-PAL – well-validated in advanced illness2).
BACKGROUND: Polypharmacy may be particularly burdensome near the end of life, as patients "accumulate" medications to treat and prevent multiple diseases.
OBJECTIVE: To evaluate associations between polypharmacy, symptom burden, and quality of life (QOL) in patients with advanced, life-limiting illness (clinician-estimated, 1 month-1 year).
DESIGN: Secondary analysis of baseline data from a trial of statin discontinuation.
PARTICIPANTS: Adults with advanced, life-limiting illness.
MAIN MEASURES: Polypharmacy was assessed by summing the number of non-statin medications taken regularly or as needed. Symptom burden was assessed using the Edmonton Symptom Assessment Scale (range 0-90; higher scores indicating greater symptom burden) and QOL was assessed using the McGill QOL Questionnaire (range 0-10; higher scores indicating better QOL). Linear regression models assessed associations between polypharmacy, symptom burden, and QOL.
KEY RESULTS: Among 372 participants, 47% were age 75 or older and 35% were enrolled in hospice. The mean symptom score was 27.0 (standard deviation (SD) 16.1) and the mean QOL score was 7.0 (SD 1.3). The average number of non-statin medications was 11.6 (SD 5.0); one-third of participants took = 14 medications. In adjusted models, higher polypharmacy was associated with higher symptom burden (coefficient 0.81; p < .001) and lower QOL (coefficient - .06; p = .001). Adjusting for symptom burden weakened the association between polypharmacy and QOL (coefficient - .03; p = .045) without a significant interaction, suggesting that worse quality of life associated with polypharmacy may be related to medication-associated symptoms.
CONCLUSIONS: Among adults with advanced illness, taking more medications is associated with higher symptom burden and lower QOL. Attention to medication-related symptoms and shared decision-making regarding deprescribing are warranted in this setting.
NIH TRIAL REGISTRY NUMBER: ClinicalTrials.gov Identifier for Parent Study - NCT01415934.
BACKGROUND: Indicators for the quality of palliative care are a priority of caregivers and managers to allow improvement of various care settings and their comparison. The involvement of patients and families is of paramount, although this is rarely achieved in practice. No validated assessment tools are available in French. Simple cultural adaption of existing questionnaires may be insufficient, due to the varying organization of care in different countries. The purpose of this study was to develop and validate a new instrument to measure the quality of palliative care and satisfaction from the patient point of view.
METHODS: Results from a qualitative study were used by a multi-professional workgroup to construct an initial set of 42 items exploring six domains. A cross-sectional survey was conducted in seven hospitals, encompassing three care settings: two palliative care units, one palliative care hospital, and four standard medical units with a mobile palliative care team. All items were assessed for acceptability. We conducted exploratory structural analysis using Principal Component Analysis (PCA), and evaluated external validity by comparison against global rating of satisfaction and the MD Anderson Symptom Inventory (MDASI) questionnaire.
RESULTS: A total of 214 patients completed the questionnaire. After removing 7 items from the response distribution, PCA identified eight interpretable domains from the 35 final items: availability of caregivers, serenity, quality of information, pain management, caregivers’ listening skills, psychosocial and spiritual aspects, possibility to refuse (care or volunteers), and respect for the patient. Internal consistency was good or acceptable for all subscales (Cronbach’s a 0.5–0.84), except the last one (0.15). Factorial structure was found globally maintained across subgroups defined by age, sex, Palliative Performance Scale (PPS = 60%, 40–50% and = 30%), and care settings. General satisfaction was inversely correlated with the 2 scores of the MDASI questionnaire: symptoms’ severity and impact on life. Each subscale, except “possibility to refuse”, correlated with general satisfaction.
CONCLUSIONS: Quali-Palli-Pat appears to be a valid, reliable, and well-accepted French tool to explore the quality of care and the satisfaction of palliative care patients. It should be confirmed in a wider sample of care settings.
BACKGROUND: Maintaining quality of life including physical functioning is highly prioritized among older cancer patients. Geriatric assessment is a recommended approach to identify patients with increased vulnerability to stressors (frailty). How frailty affects quality of life and physical functioning in older cancer patients has scarcely been investigated.
AIM: Focusing on physical functioning and global quality of life, we investigated whether frailty identified by a geriatric assessment was associated with higher risk of quality-of-life deterioration during cancer treatment and follow-up.
DESIGN: Prospective, observational study. Patients were classified as frail or non-frail by a modified geriatric assessment. Quality of life was measured using the European Organization for Research and Treatment of Cancer Core Quality-of-Life Questionnaire at inclusion, 2, 4, 6 and 12 months.
SETTING: Eight Norwegian outpatient cancer clinics.
Patients Patients >=70 years with solid tumours referred for palliative or curative systemic medical cancer treatment.
RESULTS: Among 288 patients included, 140 (49%) were frail and 148 (51%) non-frail. Frail patients consistently reported poorer scores on all functioning and symptom scales. Independent of age, gender and major cancer-related factors, frail patients had significantly poorer physical functioning and global quality of life during follow-up, and opposed to non-frail patients they had both a clinically and statistically significant decline in physical functioning from baseline until 12 months.
CONCLUSIONS: Geriatric assessment identifies frail patients with increased risk of physical decline, poor functioning and high symptom burden during and following cancer treatment. Frail patients should therefore receive early supportive or palliative care.
Aim of the study: The McGill Quality of Life Questionnaire has been widely used for people with life-threatening illnesses since 1996. In 2016 Cohen et al. revised the McGill Quality of Life Questionnaire and improved its psychometric properties and length. The aim of the present study was to adapt the McGill Quality of Life Questionnaire - Revised (MQOL-R) into Polish. The study assessed the factorial structure, reliability, and validity of the Polish adaptation of the MQOL-R.
Material and methods: The study had a non-randomised, cross-sectional design. The Polish translation of the MQOL-R was administered to 140 people with life-threatening illnesses. Patients were recruited from acute and palliative care units. Data were analysed using confirmatory factor analysis, and correlational and multiple regression analyses.
Results: The results provide support for the measurement structure of the Polish adaptation of the MQOL-R. Both the overall scale and four subscales have satisfactory internal consistency and the construct and concurrent validity.
Conclusions: The Polish MQOL-R is psychometrically sound and may serve as a valuable asset in research on quality of life of people with life-threatening illnesses.
OBJECTIVE: Death acceptance may indicate positive adaptation in cancer patients. Little is known about what characterizes patients with different levels of death acceptance or its impact on psychological distress. We aimed to broaden the understanding of death acceptance by exploring associated demographic, medical and psychological characteristics.
METHODS: At baseline, we studied 307 mixed cancer patients attending the University Cancer Center Hamburg and a specialized lung cancer center (age M=59.6, 69% female, 69% advanced cancer). At one-year follow-up, 153 patients participated. We assessed death acceptance using the validated Life Attitude Profile-Revised. Patients further completed the Memorial Symptom Assessment Scale, the Demoralization Scale, the Patient Health Questionnaire, and the Generalized Anxiety Disorder Questionnaire. Statistical analyses included multinomial and hierarchical regression analyses.
RESULTS: At baseline, mean death acceptance was 4.33 (SD=1.3, range 1-7). There was no change to follow-up (p=.26). When all variables were entered simultaneously, patients who experienced high death acceptance were more likely to be older (OR=1.04, 95%CI 1.01-1.07), male (OR=3.59, 95%CI 1.35-9.56), widowed (OR=3.24, 95%CI 1.01-10.41), and diagnosed with stage IV (OR=2.44, 95%CI 1.27-4.71). They were less likely to be diagnosed with lung cancer (OR=.20, 95%CI .07-.58) and their death acceptance was lower with every month since diagnosis (OR=.99, 95%CI.98-.99). High death acceptance predicted lower demoralization and anxiety at follow-up, but not depression.
CONCLUSIONS: High death acceptance was adaptive. It predicted lower existential distress and anxiety after one year. Advanced cancer did not preclude death acceptance, supporting the elaboration of death-related concerns in psychosocial interventions.
Background: Holistic breathlessness services have been developed for people with advanced disease and chronic breathlessness, leading to improved psychological aspects of breathlessness and health. The extent to which patient characteristics influence outcomes is unclear.
Aim: To identify patient characteristics predicting outcomes of mastery and distress due to breathlessness following holistic breathlessness services.
Design: Secondary analysis of pooled individual patient data from three clinical trials. Our primary analysis assessed predictors of clinically important improvements in Chronic Respiratory Questionnaire mastery scores (+0.5 point), and our secondary analysis predictors of improvements in Numerical Rating Scale distress due to breathlessness (-1 point). Variables significantly related to improvement in univariate models were considered in separate backwards stepwise logistic regression models.
Participants: The dataset comprised 259 participants (118 female; mean (standard deviation) age 69.2 (10.6) years) with primary diagnoses of chronic obstructive pulmonary disease (49.8%), cancer (34.7%) and interstitial lung disease (10.4%).
Results: Controlling for age, sex and trial, baseline mastery remained the only significant independent predictor of improvement in mastery (odds ratio 0.57, 95% confidence intervals 0.43–0.74; p < 0.001), and baseline distress remained the only significant predictor of improvement in distress (odds ratio 1.64; 95% confidence intervals 1.35–2.03; p < 0.001). Baseline lung function, breathlessness severity, health status, mild anxiety and depression, and diagnosis did not predict outcomes.
Conclusions: Outcomes of mastery and distress following holistic breathlessness services are influenced by baseline scores for these variables, and not by diagnosis, lung function or health status. Stratifying patients by levels of mastery and/or distress due to breathlessness appears appropriate for clinical trials and services.