Background: Despite their importance, pediatric palliative care (PPC) services are still scantly diffused. In addition, eligibility criteria for PPC are quite complex. Consequently, clinicians require a tool that suggests how to refer patients with life-limiting diseases to the most appropriate service and how to properly allocate health care resources.
Objective: Recently, the Accertamento dei bisogni Clinico-Assistenziali Complessi in PEDiatria (ACCAPED) scale has been developed by a group of experts in PPC to evaluate the specific clinical needs of pediatric patients with a life-limiting disease. This study presents the validation of the ACCAPED scale.
Design: Validation of ACCAPED scale was pursued by means of description and analysis of clinical vignettes representing patients with challenging-to-evaluate needs who have to be referred to the most appropriate service (community care, general PPC, and specialized PPC). The evaluation of vignettes according to the clinical experience of the experts represented the gold standard against which the validity of the ACCAPED scale was tested by groups with different levels of experience (experts, pediatricians, and health care providers (HCPs) not involved in PPC).
Results: Results show a very high concordance between the evaluation of the vignettes through the ACCAPED scale and the evaluation by the clinical experience for experts in PPC and pediatricians. A less favorable grade of concordance has been recorded for HCPs not involved in PPC, suggesting that educational efforts to improve basic knowledge of PPC within the medical community are needed.
Conclusions: Overall, this study suggests that the ACCAPED scale is a useful tool to improve rationalization of resources and eligibility criteria for PPC.
Context: High-quality advance care planning (ACP) discussions are important to ensure patient receipt of goal-concordant care; however, there is no existing tool for assessing ACP communication quality.
Objectives: The objective of this study was to develop and validate a novel instrument that can be used to assess ACP communication skills of clinicians and trainees.
Methods: We developed a 20-item ACP Communication Assessment Tool (ACP-CAT) plus two summative items. Randomized rater pairs assessed residents' performances in video-recorded standardized patient encounters before and after an ACP training program using the ACP-CAT. We tested the tool for its 1) discriminating ability, 2) interrater reliability, 3) concurrent validity, 4) feasibility, and 5) raters' satisfaction.
Results: Fifty-eight pre/post-training video recordings from 29 first-year internal medicine residents at Mount Sinai Hospital were evaluated. ACP-CAT reliably discriminated performance before and after training (median score 6 vs. 11, P < 0.001). For both pre/post-training encounters, interrater reliability was high for ACP-CAT total scores (intraclass correlation coefficient or ICC = 0.83 and 0.82) and the summative items Overall impression of ACP communication skills (ICC = 0.73 and 0.80) and Overall ability to respond to emotion (ICC = 0.83 and 0.82). Concurrent validity was shown by the strong correlation between ACP-CAT total score and both summative items. Raters spent an average of 4.8 minutes to complete the ACP-CAT, found it feasible, and were satisfied with its use.
Conclusion: ACP-CAT provides a validated measure of ACP communication quality for assessing video-recorded encounters and can be further studied for its applicability with clinicians in different clinical contexts.
Background: Few measures capture the complex symptoms and concerns of those receiving palliative care.
Aim: To validate the Integrated Palliative care Outcome Scale, a measure underpinned by extensive psychometric development, by evaluating its validity, reliability and responsiveness to change.
Design: Concurrent, cross-cultural validation study of the Integrated Palliative care Outcome Scale – both (1) patient self-report and (2) staff proxy-report versions. We tested construct validity (factor analysis, known-group comparisons, and correlational analysis), reliability (internal consistency, agreement, and test–retest reliability), and responsiveness (through longitudinal evaluation of change).
Setting/participants: In all, 376 adults receiving palliative care, and 161 clinicians, from a range of settings in the United Kingdom and Germany
Results: We confirm a three-factor structure (Physical Symptoms, Emotional Symptoms and Communication/Practical Issues). Integrated Palliative care Outcome Scale shows strong ability to distinguish between clinically relevant groups; total Integrated Palliative care Outcome Scale and Integrated Palliative care Outcome Scale subscale scores were higher – reflecting more problems – in those patients with ‘unstable’ or ‘deteriorating’ versus ‘stable’ Phase of Illness (F = 15.1, p < 0.001). Good convergent and discriminant validity to hypothesised items and subscales of the Edmonton Symptom Assessment System and Functional Assessment of Cancer Therapy–General is demonstrated. The Integrated Palliative care Outcome Scale shows good internal consistency (a = 0.77) and acceptable to good test–retest reliability (60% of items kw > 0.60). Longitudinal validity in form of responsiveness to change is good.
Conclusion: The Integrated Palliative care Outcome Scale is a valid and reliable outcome measure, both in patient self-report and staff proxy-report versions. It can assess and monitor symptoms and concerns in advanced illness, determine the impact of healthcare interventions, and demonstrate quality of care. This represents a major step forward internationally for palliative care outcome measurement.
BACKGROUND: In this study, we aimed to develop and validate an instrument that could be used by patients with cancer to evaluate their quality of palliative care.
METHODS: Development of the questionnaire followed the four-phase process: item generation and reduction, construction, pilot testing, and field testing. Based on the literature, we constructed a list of items for the quality of palliative care from 104 quality care issues divided into 14 subscales. We constructed scales of 43 items that only the cancer patients were asked to answer. Using relevance and feasibility criteria and pilot testing, we developed a 44-item questionnaire. To assess the sensitivity and validity of the questionnaire, we recruited 220 patients over 18 years of age from three Korean hospitals.
RESULTS: Factor analysis of the data and fit statistics process resulted in the 4-factor, 32-item Quality Care Questionnaire-Palliative Care (QCQ-PC), which covers appropriate communication with health care professionals (ten items), discussing value of life and goals of care (nine items), support and counseling for needs of holistic care (seven items), and accessibility and sustainability of care (six items). All subscales and total scores showed a high internal consistency (Cronbach alpha range, 0.89 to 0.97). Multi-trait scaling analysis showed good convergent (0.568-0.995) and discriminant (0.472-0.869) validity. The correlation between the total and subscale scores of QCQ-PC and those of EORTC QLQ-C15-PAL, MQOL, SAT-SF, and DCS was obtained.
CONCLUSION: This study demonstrates that the QCQ-PC can be adopted to assess the quality of care in patients with cancer.
The article presents the results of work on the Polish adaptation of the Death Attitude Profile—Revised by Wong, Reker, and Gesser (1994). The psychometric properties of the Polish version of the tool have been described. The results are consistent with the original version of the questionnaire and confirm that the Polish version of Death Attitude Profile—Revised fulfils the psychometric requirements for psychological tests and, as a result, can be applied in scientific research. The final version of the questionnaire consists of 32 items (including 31 diagnostic ones) that make up five dimensions of attitudes toward death: (a) Fear of Death, (b) Death Avoidance, (c) Neutral Acceptance, (d) Escape Acceptance, and (e) Approach Acceptance. The questionnaire was tested on 1,285 subjects aged 13 to 90 years (M = 47.27, SD = 18.21). Reliability values (Cronbach’s a) for individual scales vary from a = .63 to a = .89. Confirmatory factor analysis was used to evaluate the validity of the questionnaire.
Context: This study was designed to translate and validate the National Comprehensive Cancer Network (NCCN) distress thermometer (DT) in regional language " Malayalam" and to see the feasibility of using it in our patients.
Aims: (1) To translate and validate the NCCN DT. (2) To study the feasibility of using validated Malayalam translated DT in Malabar Cancer center.
Settings and Design: This is a single-arm prospective observational study. The study was conducted at author's institution between December 8, 2015, and January 20, 2016 in the Department of Cancer Palliative Medicine.
Materials and Methods: This was a prospective observational study carried out in two phases. In Phase 1, the linguistic validation of the NCCN DT was done. In Phase 2, the feasibility, face validity, and utility of the translated of NCCN DT in accordance with QQ-10 too was done.
Statistical Analysis Used: SPSS version 16 (SPSS Inc. Released 2007. SPSS for Windows, Version 16.0. Chicago, SPSS Inc.) was used for analysis.
Results: Ten patients were enrolled in Phase 2. The median age was 51.5 years and 40% of patients were male. All patients had completed at least basic education up to the primary level. The primary site of cancer was heterogeneous. The NCCN DT completion rate was 100%. The face validity, utility, reliability, and feasibility were 100%, 100%, 100%, and 90%, respectively.
Conclusion: It can be concluded that the Malayalam validated DT has high face validity, utility, and it is feasible for its use.
Objective: To translate and validate the Perinatal Grief Scale (PGS) (short version) in a sample of Greek women with perinatal loss during the first and second trimester of pregnancy.
Methods: One hundred seventy-six women were approached a few hours after the loss. Along with the PGS, three more questionnaires were completed: the Edinburgh Postnatal Depression Scale (EPDS), the Hospital Anxiety and Depression Scale (HADS) and the State-Trait Anxiety Inventory (STAI), in order to assess the convergent validity of the PGS.
Results: Total sample mean age was 34.1 years (SD = 5.2). Mean values and Cronbach’s alpha coefficients for PGS subscales exceeded the minimum reliability standard of 0.70. Mean score for “Active grief” was 31.47 (SD = 9.31), for “Difficulty Coping” was 23.13 (SD = 7.54) and for “Despair” was 21.07 (SD = 7.07). By applying Pearson’s correlation coefficients, PGS subscales positively correlated with scores on EPDS, STAI and HADS.
Conclusions: The PGS Greek version is a reliable instrument in terms of internal consistency and the Cronbach’s alpha coefficients are high. The Greek version of PGS can be a useful instrument for the detection of the psychological impact after a perinatal loss and it has implications for both scientific research and clinical routine.
BACKGROUND: Cachexia is a multifactorial syndrome that is highly prevalent in advanced cancer patients and leads to progressive functional impairments. The classification of cachexia stages is essential for diagnosing and treating cachexia. However, there is a lack of simple tools with good discrimination for classifying cachexia stages. Therefore, our study aimed to develop a clinically applicable cachexia staging score (CSS) and validate its discrimination of clinical outcomes for different cachexia stages.
METHODS: Advanced cancer patients were enrolled in our study. A CSS comprising the following five components was developed: weight loss, a simple questionnaire of sarcopenia (SARC-F), Eastern Cooperative Oncology Group, appetite loss, and abnormal biochemistry. According to the CSS, patients were classified into non-cachexia, pre-cachexia, cachexia, and refractory cachexia stages, and clinical outcomes were compared among the four groups.
RESULTS: Of the 297 participating patients, data from 259 patients were ultimately included. Based on the CSS, patients were classified into non-cachexia (n = 69), pre-cachexia (n = 68), cachexia (n = 103), and refractory cachexia (n = 19) stages. Patients with more severe cachexia stages had lower skeletal muscle indexes (P = 0.002 and P = 0.004 in male and female patients, respectively), higher prevalence of sarcopenia (P = 0.017 and P = 0.027 in male and female patients, respectively), more severe symptom burden (P < 0.001), poorer quality of life (P < 0.001 for all subscales except social well-being), and shorter survival times (P < 0.001).
CONCLUSIONS: The CSS is a simple and clinically applicable tool with excellent discrimination for classifying cachexia stages. This score is extremely useful for the clinical treatment and prognosis of cachexia and for designing clinical trials.
BACKGROUND: The evaluation of the effectiveness of undergraduate palliative care education (UPCE) programs is an essential foundation to providing high-quality UPCE programs. Therefore, the implementation of valid evaluation tools is indispensable. Until today, there has been no general consensus regarding concrete outcome parameters and their accurate measurement. The Program in Palliative Care Education and Practice Questionnaire (German Revised Version; PCEP-GR) is a promising assessment tool for UPCE. The aim of the current study was to evaluate the psychometric properties of PCEP-GR and to demonstrate its feasibility for the evaluation of UPCE programs.
METHODS: The practical feasibility of the PCEP-GR and its acceptance in medical students were investigated in a pilot study with 24 undergraduate medical students at Heinrich Heine University Dusseldorf, Germany. Subsequently, the PCEP-GR was surveyed in a representative sample (N = 680) of medical students in order to investigate its psychometric properties. Factorial validity was investigated by means of principal component analysis (PCA). Reliability was examined by means of split-half-reliability analysis and analysis of internal consistency. After taking into consideration the PCA and distribution analysis results, an evaluation instruction for the PCEP-GR was developed.
RESULTS: The PCEP-GR proved to be feasible and well-accepted in medical students. PCA revealed a four-factorial solution indicating four PCEP-GR subscales: preparation to provide palliative care, attitudes towards palliative care, self-estimation of competence in communication with dying patients and their relatives and self-estimation of knowledge and skills in palliative care. The PCEP-GR showed good split-half-reliability and acceptable to good internal consistency of subscales. Attitudes towards palliative care slightly missed the criterion of acceptable internal consistency. The evaluation instruction suggests a global PCEP-GR index and four subscales.
CONCLUSIONS: The PCEP-GR has proven to be a feasible, economic, valid and reliable tool for the assessment of UPCE that comprises self-efficacy expectation and relevant attitudes towards palliative care.
Purpose: Decisional conflict is a significant and important barrier in end-of-life care planning, and it is often encountered in health professionals' discussions with patients and their families. Little is known about the measurement of decisional conflict, and existing measures are not suitable for all contexts. In this study, psychometric properties of the Decisional Conflict Scale, which was translated for the first time into Korean [Korean version of DCS (K-DCS)], were examined.
Methods: A sample of 273 community-dwelling elders was surveyed (mean age: 77.26 years; 80.2% women). Internal consistency reliability and stability reliability were tested by calculating Cronbach a and Pearson's correlation coefficients. Exploratory factor analysis and logistic regression analyses were performed to test validity.
Results: Reliability of the K-DCS was acceptable with Cronbach a =.87; test-retest correlation r = .76. Factor analysis showed a two-factor structure with nine items: informed/values clarity and uncertainty. Concordance between K-DCS and the four treatment directives was significant (kappa values =.78). Controlling for age and gender, those with decision implementation were more likely to implement their decisions on tube feeding (odds ratio = 5.15, p = .033) and hospice care (odds ratio = 2.83, p = .017).
Conclusion: The K-DCS appears to be a valid measure to evaluate decisional conflict about advance directives in community-dwelling Korean older adults. Further validation of the K-DCS is warranted, though caution should be exercised in using subscales because of differences in decisional contexts.
The Perinatal Grief Intensity Scale (PGIS) was developed for clinical use to identify and predict intense grief and need for follow-up after perinatal loss. This study evaluates the validity of the PGIS via its ability to predict future intense grief based on a PGIS score obtained early after a loss. A prospective observational study was conducted with 103 international, English-speaking women recruited at hospital discharge or via the internet who experienced a miscarriage, stillbirth, or neonatal death within the previous 8 weeks. Survey data were collected at baseline using the PGIS and the Perinatal Grief Scale (PGS). Follow-up data on the PGS were obtained 3 months later. Data analysis included descriptive statistics, Cronbach's alpha, receiver operating characteristic curve analysis, and confirmatory factor analysis.
Cronbach's alphas were =0.70 for both instruments. PGIS factor analysis yielded three factors as predicted, explaining 57.7% of the variance. The optimal cutoff identified for the PGIS was 3.535. No difference was found when the ability of the PGIS to identify intense grief was compared to the PGS (p = 0.754). The PGIS was not inferior to the PGS (AUC = 0.78, 95% CI 0.68–0.88, p < 0.001) in predicting intense grief at the follow-up. A PGIS score = 3.53 at baseline was associated with increased grief intensity at Time 2 (PGS: OR = 1.97, 95% CI 1.59–2.34, p < 0.001).
The PGIS is comparable to the PGS, has a lower response burden, and can reliably and validly predict women who may experience future intense grief associated with perinatal loss.
The EORTC Quality of Life Group has just completed the final phase (field-testing and validation) of an international project to develop a stand-alone measure of spiritual well-being (SWB) for palliative cancer patients. Participants (n = 451)-from 14 countries on four continents; 54% female; 188 Christian; 50 Muslim; 156 with no religion-completed a provisional 36-item measure of SWB plus the EORTC QLQ-C15-PAL (PAL), then took part in a structured debriefing interview. All items showed good score distribution across response categories. We assessed scale structure using principal component analysis and Rasch analysis, and explored construct validity, and convergent/divergent validity with the PAL. Twenty-two items in four scoring scales (Relationship with Self, Relationships with Others, Relationship with Someone or Something Greater, and Existential) explained 53% of the variance. The measure also includes a global SWB item and nine other items. Scores on the PAL global quality-of-life item and Emotional Functioning scale weakly-moderately correlated with scores on the global SWB item and two of the four SWB scales. This new validated 32-item SWB measure addresses a distinct aspect of quality-of-life, and is now available for use in research and clinical practice, with a role as both a measurement and an intervention tool.
Background and Objectives: Coping with predeath grief (PDG) is an unmet need in caregivers of persons with dementia (PWD). The Marwit-Meuser Caregiver Grief Inventory (MM-CGI) and its abbreviated MM-CGI-Short-Form (MM-CGI-SF) are among the few empirically developed scales that detect PDG, yet they have not been substantially validated outside United States. We evaluated the reliability and validity of the PDG scales in a multiethnic Asian population distinct from that of United States.
Research Design and Methods: Family caregivers of community-dwelling PWD (n = 300) completed self-administered questionnaires containing MM-CGI and other scales of related construct. Sixty percent of the participants repeated the questionnaires 1 week later for test-retest reliability. Internal-consistency reliability was assessed by Cronbach’s a, test-retest reliability by intraclass-correlation-coefficient, construct validity by Spearman’s correlation-coefficient, and factorial validity by confirmatory factor analysis (CFA). Cohen’s was used to compare the agreement between MM-CGI and a commonly-used caregiver burden scale (Zarit Burden Interview).
Results: MM-CGI and MM-CGI-SF demonstrated internal-consistency reliability, test-retest reliability, construct validity, and known-group validity. In CFA, MM-CGI showed modest model-fit (comparative-fit-index, CFI = .80; Tucker-Lewis-index, TLI = .79), whereas MM-CGI-SF showed better model-fit (CFI = .91; TLI = .90). Eighty-six percent of the caregivers reported average or high levels of PDG, with 18% reporting high PDG. High scores in the caregiver burden scale only showed modest agreement with high scores in MM-CGI ( = .47).
Cette étude de faisabilité mesure l'effet d'une formation de respiration à lèvres pincées délivrée sur Skype vis-à-vis de la dyspnée, de l'activité physique, de la qualité de vie liée à la santé et de l'auto-efficacité.
Le soutien aux aidants familiaux est une des priorités du dernier plan Alzheimer. Cependant, malgré les très nombreuses recherches, les dispositifs actuellement mis en place dans cet objectif sont peu utilisés. La centration quasi exclusive sur les effets délétères de la situation d'aidant des personnes atteintes de maladie d'Alzheimer, au détriment des compétences acquises et des satisfactions ressenties dans le rôle d'aidant explique en partie cette impasse. Cette étude utilise l'approche et la méthodologie de Nolan permettant une évaluation holistique des besoins auprès d'un échantillon d'aidants français (N=74) et constitue la première étape de validation de cette méthode. Elle décrit comment les aidants font face aux difficultés de la situation de soin et quelles gratifications ils peuvent tirer de leur rôle.
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Dans cet article, les auteurs rapportent une expérience d'aide aux aidants. Ils partent de l'hypothèse qu'un programme psycho-éducatif d'aide aux aidants naturels conjointement à un traitement médicamenteux par inhibiteur de l'acétylcholinestérase (IACE) entraîne un bénéfice clinique significatif chez les patients et les aidants.
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Depuis l'annonce du diagnostic et l'information du patient, en passant par la mise en oeuvre des thérapeutiques (chirurgie, radiothérapie, chimiothérapie), puis l'éducation du patient et l'intégration dans un réseau, enfin la recherche clinique. L'analyse du processus aurait pu d'ailleurs s'étendre aussi bien en amont (éducation pour la santé, dépistage) qu'en aval - plan personnel de soins, soins de support, surveillance après le traitement initial, soins palliatifs). Un autre éclairage présent dans ce numéro est que la qualité de vie est une mesure de résultat particulièrement pertinente chez les patients atteints de cancers. Une prise en compte des spécificités de ces patients (grand âge) est nécessaire, mais elle fait obstacle à une standardisation des pratiques, contraignant les professionnels à un "ajustement mutuel" de leurs pratiques avec leurs patients. Ces multiples facettes de la démarche qualité appliquée à la prise en charge des patients atteint de cancers ont bénéficié de la mise en oeuvre des dispositifs réglementaires du plan cancer dans le cadre des SROS III et devraient s'appuyer sur les centres de coordination en cancérologie (3C) véritable "cellules de qualité opérationnelles" en cancérologie. Est-il pertinent et même faisable de mettre en place dans les hôpitaux un dispositif "3C" parallèle à celui pour l'ensemble des soins dans le cadre de l'accréditation : comment pourrait-il y avoir un circuit pour les médicaments, et un autre pour la chimiothérapie ? Enfin, la place éminente faite aux réseaux régionaux dans cette organisation est un autre sujet d'interrogation sans mettre en cause l'intérêt des réseaux dont l'article de F Chauvin et al apporte une nouvelle démonstration.
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Cet article présente un projet qui vise à développer un nouvel instrument mesurant l'auto-compétence perçue en soins infirmiers palliatifs. Le procédé de développement comprend trois phases et plusieurs objectifs spécifiques décrits dans l'article.
Prévenir la formation des escarres est cruciale en soins palliatifs. L'auteure s'interroge sur l'efficacité de l'échelle Waterlow qui permet d'en identifier les risques d'apparition. Pour cela, elle a effectué une revue de littérature sur ce thème afin d'en dégager des recommandations pour la pratique clinique.
L'auteur décrit la procédure que doivent suivre les professionnels des soins palliatifs afin que leurs projets de recherche soient approuvés par l'un des comités d'éthique de Grande Bretagne, il recense pour cela les principaux problèmes et obstacles rencontrés par les chercheurs.