Hostname: page-component-cd9895bd7-7cvxr Total loading time: 0 Render date: 2024-12-29T17:54:51.308Z Has data issue: false hasContentIssue false
  • English
  • Français

Development of a tool to identify and assess psychosocial and spiritual needs in end-of-life patients: The ENP-E scale

Published online by Cambridge University Press:  16 October 2018

Dolors Mateo-Ortega ,
Joaquín T. Limonero ,
Jorge Maté-Méndez ,
Elba Beas ,
Jesús González-Barboteo ,
Elisabeth Barbero ,
Sara Ela  and
Xavier Gómez-Batiste Open the ORCID record for Xavier Gómez-Batiste [Opens in a new window]
Dolors Mateo-Ortega
Affiliation:
The “Qualy” Observatory, WHO Collaborating Centre for Public Health Palliative Care Programs, Catalan Institute of Oncology, L'Hospitalet de Llobregat, Spain Palliative Care, University of Vic-Central University of Catalonia, Vic, Spain Research Group on Stress and Health, Faculty of Psychology, Autonomous University of Barcelona, Bellatera, Spain Palliative Care Unit, Consorci Sanitari de Terrassa, Terrassa, Spain
Joaquín T. Limonero
Affiliation:
Research Group on Stress and Health, Faculty of Psychology, Autonomous University of Barcelona, Bellatera, Spain
Jorge Maté-Méndez
Affiliation:
Research Group on Stress and Health, Faculty of Psychology, Autonomous University of Barcelona, Bellatera, Spain Psychoncology Unit, Catalan Institute of Oncology L'Hospitalet de Llobregat, Spain
Elba Beas
Affiliation:
The “Qualy” Observatory, WHO Collaborating Centre for Public Health Palliative Care Programs, Catalan Institute of Oncology, L'Hospitalet de Llobregat, Spain
Jesús González-Barboteo
Affiliation:
Palliative Care Unit, Catalan Institute of Oncology, L'Hospitalet de Llobregat, Spain
Elisabeth Barbero
Affiliation:
Social Work Unit, Catalan Institute of Oncology, L'Hospitalet de Llobregat, Spain
Sara Ela
Affiliation:
The “Qualy” Observatory, WHO Collaborating Centre for Public Health Palliative Care Programs, Catalan Institute of Oncology, L'Hospitalet de Llobregat, Spain
Xavier Gómez-Batiste*
Affiliation:
The “Qualy” Observatory, WHO Collaborating Centre for Public Health Palliative Care Programs, Catalan Institute of Oncology, L'Hospitalet de Llobregat, Spain Palliative Care, University of Vic-Central University of Catalonia, Vic, Spain
*
Author for correspondence: Xavier Gómez-Batiste, M.D., Ph.D., Avinguda Gran Via de L'Hospitalet, 199-203 08908 - L'Hospitalet de Llobregat, Spain. E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective

The goal of this study is to describe the development of a new tool, the Psychosocial and Spiritual Needs Evaluation scale Instrumento de Evaluación de Necesidades Psicosociales y Espirituales del Enfermo al Final de Vida (ENP-E), designed to assess the psychosocial needs of end-of-life (EOL) patients. And, secondarily, to describe the face validity and psychometric properties of this instrument in the Spanish-speaking context.

Method

The scale was developed through a seven-stage process: (1) literature review; (2) expert panel establishment; (3) discussion and agreement on the most relevant dimensions of psychosocial care; (4) description of key indicators and consensus-based questions to evaluate such dimensions; (5) assessment of the scale by external palliative care (PC) professionals; (6) evaluation by patients; and (7) analysis of scale's psychometrics properties. To assess content validity, 30 PC professionals and 20 patients evaluated the questionnaire. To determine psychometric properties, 150 participants completed these scales: the ENP-E; the Hospital Anxiety and Depression Scale; item 15 from the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 15 Palliative; and the Distress Thermometer.

Result

All respondents evaluated the tool as “excellent.” In terms of construct validity, the internal consistency (Cronbach's alpha = 0.74) and temporal stability (test-retest r = 0.74, p < 0.1) were both adequate. On the factorial analysis, four factors (emotional-wellbeing, social support, spiritual, and information) explained 58.4% of the variance. This scale has a sensitivity of 76.3%, specificity of 78.9%, and the cutoff is 28.

Significance of results

To provide quality PC to EOL patients, it is essential to determine the psychosocial factors that influence well-being. This requires the use of reliable and specific instruments. The ENP-E is a novel tool that provides a systematic, holistic assessment of the psychosocial needs of EOL patients. Its routine use would allow clinicians to monitor such needs over time. This would, in turn, permit comprehensive, highly individualized interventions to improve effective PC approach.

Keywords

Palliative carePsychosocial interventionSpiritualitySufferingSurveys and questionnaires
Type
Original Article
Information
Palliative & Supportive Care , Volume 17 , Issue 4 , August 2019 , pp. 441 - 447
Copyright
Copyright © Cambridge University Press 2018 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Anderson, F, Downing, GM, Hill, J, et al. (1996) Palliative performance scale (PPS): A new tool. Journal of Palliative Care 12(5), 5–11.10.1177/082585979601200102Google Scholar
Bayés, R, Limonero, JT, Barreto, P, et al. (1995) Assessing suffering. Lancet 346(8988), 1492.10.1016/S0140-6736(95)92511-2Google Scholar
Bayés, R, Arranz, P, Barbero, J, et al. (1996) Propuesta de un modelo integral para una intervención terapéutica paliativa. Medicina Paliativa 3, 114–121.Google Scholar
Bayés, R, Limonero, JT, Barreto, P, et al. (1997). A way to screen for suffering in palliative care. Journal of Palliative Care 13(2), 22–26.10.1177/082585979701300205Google Scholar
Bayés, R, Limonero, JT (1999) Aspectos emocionales del proceso de morir. In: Emociones y Salud, Fernández-Abascal, et al. (eds), pp. 265–278. Barcelona: Ariel.Google Scholar
Bayés, R (2000) Principios de investigación psicosocial en cuidados paliativos. In Die Trill, M, López Imedio, E (eds.). Aspectos psicológicos en cuidados paliativos: La comunicación con el enfermo y la familia (pp. 651–668). Madrid: ADESGoogle Scholar
Bruera, E, Kuehn, N, Miller, MJ, et al. (1991). The Edmonton Symptom Assessment System (ESAS): A simple method for the assessment of palliative care patients. Journal of Palliative Care 7, 6–9.10.1177/082585979100700202Google Scholar
Burgueño, MJ, García-Bastos, JL, González-Buitrago, JM (1995) Las curvas ROC en la evaluación de las pruebas diagnósticas [ROC curves in the evaluation of diagnostic tests]. Medicina Clinica (Barcelona) 104(7), 661–670.Google Scholar
Callahan, D (2000) Death and the research imperative. New England Journal of Medicine 342(9), 654–656.10.1056/NEJM200003023420910Google Scholar
Cassell, EJ (1982) The nature of suffering and the goals of medicine. New England Journal of Medicine 306, 639–645.10.1056/NEJM198203183061104Google Scholar
Chochinov, HM, Wilson, KG, Enns, M, et al. (1997) “Are you depressed?” Screening for depression in the terminally ill. American Journal of Psychiatry 154(5), 674–676.Google Scholar
Comas, MD, Calafell, B, Limonero, JT, et al. (2004) Elaboración de una escala observacional para la evaluación de la depresión en Cuidados Paliativos: Estudio preliminar. Medicina Paliativa 11(2), 96–101.Google Scholar
Ekman, P, Matsumoto, D, Friesen, WV (1998) Facial expression in affective disorders. In Ekman, P and Rosenberg, EL (eds). What the face reveals: Basic and applied studies of spontaneous expression using the Facial Action Coding System (FACS) (pp. 331–342). New York: Oxford University Press.Google Scholar
Evidence-Based Medicine Working Group (1992) Evidence-based medicine: A new approach to teaching the practice of medicine. Journal of the American Medical Association 268, 2420–2425.10.1001/jama.1992.03490170092032Google Scholar
Ewing, G, Todd, C, Rogers, M, et al. (2004) Validation of a symptom measure suitable for use among palliative care patients in the community: CAMPAS-R. Journal of Pain and Symptom Management 27(4), 287–299.10.1016/j.jpainsymman.2003.12.012Google Scholar
Gómez-Batiste, X, Mateo-Ortega, D, Lasmarías, C, et al. (2017) Enhancing psychosocial and spiritual palliative care: Four-year results of the program of comprehensive care for people with advanced illnesses and their families in Spain. Palliative and Supportive Care 15(1), 98–109.10.1017/S1478951516000857Google Scholar
Gómez-Batiste, X, Lasmarías, C, Amblas, J, et al. (2017) Looking after the essential needs of patients: The program for the comprehensive care of people with advanced chronic conditions and their families in Spain. In Gómez-Batiste, X and Connor, S (eds). Building integrated palliative care programs and services (pp. 365–373). Catalonia, Spain: Eumo Editorial SAU.Google Scholar
Groenvold, M, Petersen, MA, Aaronson, NK, et al. (2006) The development of the EORTC QLQ-C15-PAL: A shortened questionnaire for cancer patients in palliative care. European Journal of Cancer 42(1), 55–64.10.1016/j.ejca.2005.06.022Google Scholar
Holland, J (1999) NCCN practical guidelines for the management of psychosocial distress. Oncology 13(5A), 113–147.Google Scholar
Lazarus, RS, Folkman, S (1984) Stress, appraisal and coping. New York: Springer.Google Scholar
Limonero, JT, Mateo, D, Maté-Méndez, , et al. (2012) Evaluación de las propiedades psicométricas del cuestionario de Detección de Malestar Emocional (DME) en pacientes oncológicos [Assessment of the psychometric properties of the detection of emotional distress scale in cancer patients]. Gaceta Sanitaria 26(2), 145–152.10.1016/j.gaceta.2011.07.016Google Scholar
Limonero, JT, Maté, J, Mateo, D, et al. (2016) Desarrollo de la escala DME-C: Una escala para la detección del malestar emocional de los cuidadores principales de personas con enfermedad avanzada o al final de la vida [Development of the DME-C: A scale for detecting emotional distress in primary caregivers of patients living with advanced illness or approaching end of their lives]. Ansiedad y Estrés 22(2–3), 104–109.10.1016/j.anyes.2016.09.001Google Scholar
Mahoney, FI, Barthel, DW (1965) Functional evaluation: The Barthel index. Maryland State Medical Journal 14, 61–65.Google Scholar
Martínez de la Iglesia, J, Duenas Herrerob, R, Onis Vilchesa, MC, et al. (2001) Adaptación y validación al castellano del cuestionario de Pfeiffer (SPMSQ) para detectar la existencia de deterioro cognitivo en personas mayores de 65 años [Cross-cultural adaptation and validation of Pfeiffer's test (Short Portable Mental Status Questionnaire [SPMSQ]) to screen cognitive impairment in general population aged 65 or older]. Medicina Clinica 117(4), 129–134.10.1016/S0025-7753(01)72040-4Google Scholar
Maté, J, Mateo, D, Bayés, , et al. (2009) Elaboración y propuesta de un instrumento para la detección de malestar emocional en enfermos al final de la vida. Psicooncología 6(2–3), 507–518.Google Scholar
Mateo-Ortega, D, Gómez-Batiste, X, Limonero, JT, et al. (2013) Efectividad de la intervención psicosocial en pacientes con enfermedad avanzada y final de vida. Psicooncología 10(2–3), 299–316.Google Scholar
Mateo-Ortega, D, Gómez-Batiste, X, Maté, J, et al. (2018) Effectiveness of psychosocial interventions in complex palliative care patients: A quasi-experimental, prospective multicenter study. Journal of Palliative Medicine 21(6), 802–808.Google Scholar
Murray, SA, Kendall, M, Boyd, K, et al. (2005) Illness trajectories and palliative care. British Medical Journal 330(7498), 1007–1011.10.1136/bmj.330.7498.1007Google Scholar
NICE (National Institute for Clinical Excellence) (2004) Guidance on cancer services: Improving supportive and palliative care for adults with cancer. The manual. Available from https://www.nice.org.uk/guidance/csg4/resources/improving-supportive-and-palliative-care-for-adults-with-cancer-pdf-773375005Google Scholar
OMS (Organización Mundial de la Salud) (2007) Control del cáncer: Aplicación de los conocimientos. Guía de la OMS para desarrollar programas eficaces: Cuidados paliativos. Available from http://apps.who.int/iris/bitstream/10665/44025/1/9789243547343_spa.pdfGoogle Scholar
Schwartz, CE, Merriman, MP, Reed, G, et al. (2005) Evaluation of the Missoula-VITAS Quality of Life Index--revised: Research tool or clinical tool? Journal of Palliative Medicine 8(1), 121–135.Google Scholar
SECPAL (Sociedad Española de Cuidados Paliativos). (2002) Guía de criterios de calidad en cuidados paliativos. Madrid: Ministerio de Sanidad y Consumo.Google Scholar
Tejero, A, Guimera, E, Farre, J, et al. (1986) Uso clínico del HAD (Hospital Anxiety and Depresión Scale) en población psiquiátrica: Un estudio de su sensibilidad, fiabilidad y validez. Rev del Dep Psiquiatr Fac Med Barcelona 13, 233–238.Google Scholar
Vodermaier, A, Linden, W, Siu, C (2009) Screening for emotional distress in cancer patients: A systematic review of assessment Instruments. Journal of the National Cancer Institute 101(21), 1464–1488.10.1093/jnci/djp336Google Scholar
Supplementary material: File

Mateo-Ortega et al. supplementary material

Mateo-Ortega et al. supplementary material 1

Download Mateo-Ortega et al. supplementary material(File)
File 689.7 KB