Spanish adaptation and validation of the supportive & palliative care indicators tool – SPICT-ES™

OBJECTIVE: To culturally adapt and validate the SPICTTM to Spanish, which is a brief and simple tool to support a better identification of chronic patients who have palliative care needs. METHODS: For this study, we designed a multicenter and national project between the centers of Galicia, Balearic Islands, and Andalusia. For the process of translation and cross-cultural adaptation of the SPICTTM to Spanish, we followed the steps proposed by Beaton et al. with successive translations and subsequent consensus of experts using the debriefing methodology. After the content validation was completed, the psychometric properties were validated. A prospective longitudinal study was designed with 188 patients from Galicia, the Balearic Islands, and Andalusia. The internal consistency and reliability of the test and retest was analyzed for 10 days by the same researcher. RESULTS: For more than 90% of the participants of the SPICT-ESTM, it seems simple to be filled out, and they consider it written in an understandable language. The average time to apply the questionnaire without prior knowledge was 4 minutes and 45 seconds. To evaluate the internal consistency of the instrument, we used the Kuder-Richardson formula 20. Internal consistency is 0.71. The agreement index of the Kappa test is between 0.983 and 0.797 for the different items. CONCLUSIONS: In this study, we demonstrate the equivalence of content with the original. In addition, the validation of the psychometric properties establishes that the SPICT-ESTM maintains adequate reliability and stability. If we add the satisfaction shown by the professionals and the ease of use, the SPICT-ESTM is an adequate tool for the identification of palliative patients with chronic diseases and palliative care needs.

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A New Approach to the Identification of Palliative Care Needs and Advanced Chronic Patients among Nursing Home Residents

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph18063171 ◽

2021 ◽

Vol 18 (6) ◽

pp. 3171

Author(s):

Ana A. Esteban-Burgos ◽

María José Lozano-Terrón ◽

Daniel Puente-Fernandez ◽

César Hueso-Montoro ◽

Rafael Montoya-Juárez ◽

...

Keyword(s):

Palliative Care ◽

Nursing Homes ◽

Statistical Significance ◽

Nursing Home Residents ◽

Cross Sectional Study ◽

Care Needs ◽

Chronic Patients ◽

Cross Sectional ◽

Surprise Question ◽

Palliative Care Needs

Background: Proper planning of Palliative Care in nursing homes requires advanced knowledge of the care needs that residents show. The aim of the study was to evaluate Palliative Needs and other conditions such as fragility, complexity, and prognosis and also to suggest new indicators for the establishment of the resident’s advanced chronic condition. Methods: Cross-sectional study conducted in 149 nursing homes Complex Chronic residents evaluated by trained professionals. Palliative Care Needs, assessed by the NECPAL ICO-CCOMS© tool, and fragility, case and palliative complexity and prognosis were evaluate through a comprehensive assessment. Descriptive analyses and association measures were performed setting the statistical significance at 0.05. Results: More than 50% of the residents had positive Surprise Question and other Palliative Needs and were classified as Advanced Chronic Patients. Distress and/or Severe Adaptative Disorder was the most frequent need shown by the residents and significant differences in levels of frailty and other characteristics, were found between the Positive and the Negative Surprise Question Groups. Statistically significant correlations were also found between aspects of both groups. Conclusions: Nursing homes residents show Palliative Needs regardless of the response to the Surprise Question of the NECPAL tool. Other characteristics such as presence of an intermediate level of frailty are suggested as a new perspective to identify advanced chronic patients among nursing homes residents.

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Mapping the nature of distress raised by patients with high-grade glioma and their family caregivers: a descriptive longitudinal study

Neuro-Oncology Practice ◽

10.1093/nop/npz032 ◽

2019 ◽

Vol 7 (1) ◽

pp. 103-110

Author(s):

Jennifer Philip ◽

Anna Collins ◽

Stacey Panozzo ◽

Jane Staker ◽

Michael Murphy

Keyword(s):

Palliative Care ◽

High Grade Glioma ◽

High Grade ◽

Care Needs ◽

Care Coordinator ◽

Early Integration ◽

Structured Intervention ◽

New Diagnosis ◽

Prospective Longitudinal ◽

Palliative Care Needs

Abstract Background Few supportive and palliative care interventions have been described for people with high-grade glioma (HGG) and their caregivers. A structured intervention, I-CoPE, which includes regular screening of patients’ and caregivers’ needs, was delivered as a pilot study in a tertiary neuro-oncological unit. This study prospectively described the severity and content of key concerns raised by patients and their caregivers in the 3 months following a diagnosis of HGG. Methods Consecutive patients and caregivers were screened for distress longitudinally using the Distress Thermometer at 3 time points. Exploration of the issues raised during screening was undertaken by the care coordinator and the issues documented. This documentation was subsequently audited to map patterns and nature of distress. The key reasons underlying distress and responses offered were grouped thematically and summarized using descriptive statistics. Results Thirty-two patients and 31 caregivers were recruited and underwent screening. At diagnosis, 87% of caregivers (n = 27) and 60% of patients (n = 19) reported distress scores meeting clinical significance. The predominant concerns reported by patients during screening related to existential issues such as fear of dying, whereas caregivers were more focused on practical caring responsibilities. Over time, the reasons for distress changed to include more physical health concerns for patients and more psychological concerns for caregivers. Conclusions This prospective longitudinal descriptive study revealed that following a new diagnosis of HGG, patients and caregivers had changing needs for support and fluctuating distress, mirroring the illness trajectory. Palliative care needs were apparent from diagnosis, and early integration of palliative care should be considered.

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Validation of the FACETS-OF-PPC as an Outcome Measure for Children with Severe Neurological Impairment and Their Families—A Multicenter Prospective Longitudinal Study

Children ◽

10.3390/children8100905 ◽

2021 ◽

Vol 8 (10) ◽

pp. 905

Author(s):

Sophie Pelke ◽

Julia Wager ◽

Benedikt B. Claus ◽

Kathrin Stening ◽

Boris Zernikow ◽

...

Keyword(s):

Palliative Care ◽

Psychometric Properties ◽

Outcome Measure ◽

Outcome Measurement ◽

Care Service ◽

Palliative Care Service ◽

Neurological Impairment ◽

Prospective Longitudinal Study ◽

Prospective Longitudinal ◽

Severe Neurological Impairment

Outcome measurement in pediatric palliative care (PPC) is receiving increasing attention. The FACETS-OF-PPC, a multidimensional outcome measure for children with severe neurological impairment, has been developed and partly validated. This study aimed to conclude the validity of the German version of the FACETS-OF-PPC. A multicenter prospective study with two points of measurement has been conducted, employing confirmatory factor analyses, reliability analyses, and analyses to evaluate the tool’s sensitivity to change. Overall, 25 inpatient and outpatient teams throughout Germany recruited N = 227 parents of affected children and N = 238 professional caregivers. Participants filled out the FACETS-OF-PPC on the admission of a child to a palliative care service and at discharge from inpatient settings or two months after admission to outpatient services. The analyses revealed the questionnaire needing further adaption. Now, 17 of the original 34 items contribute to the construction of the questionnaire scales. The other items remain part of the questionnaire and may be evaluated descriptively. Furthermore, the FACETS-OF-PPC has moderate to appropriate internal consistency and is sensitive to change. Creating an outcome measure with good psychometric properties for the vulnerable population of children with severe neurological impairment appears extremely difficult. Considering these challenges, the FACETS-OF-PPC demonstrates adequate psychometric properties.

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Comparing complex chronic patients to advanced chronic patients with palliative care needs: cross-sectional study

International Journal of Integrated Care ◽

10.5334/ijic.2904 ◽

2016 ◽

Vol 16 (6) ◽

pp. 356

Author(s):

Carles Constante Beitia ◽

Carles Blay Pueyo ◽

Marisa Martínez-Muñoz ◽

Anna Schiaffino Rubinat ◽

Albert Ledesma Castelltort

Keyword(s):

Palliative Care ◽

Cross Sectional Study ◽

Sectional Study ◽

Care Needs ◽

Chronic Patients ◽

Cross Sectional ◽

Palliative Care Needs

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Supportive care needs and service use during palliative care in family caregivers of patients with advanced cancer: a prospective longitudinal study

Supportive Care in Cancer ◽

10.1007/s00520-020-05565-z ◽

2020 ◽

Author(s):

Anneke Ullrich ◽

Gabriella Marx ◽

Corinna Bergelt ◽

Gesine Benze ◽

Youyou Zhang ◽

...

Keyword(s):

Palliative Care ◽

Longitudinal Study ◽

Supportive Care ◽

Family Caregivers ◽

Advanced Cancer ◽

Service Use ◽

Supportive Care Needs ◽

Care Needs ◽

Prospective Longitudinal Study ◽

Prospective Longitudinal

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Psychometric Properties of the Caregiver Inventory for Measuring Caregiving Self-Efficacy of Caregivers of Patients with Palliative Care Needs

Neuropsychiatry ◽

10.4172/neuropsychiatry.1000292 ◽

2017 ◽

Vol 07 (06) ◽

Author(s):

Doris YP Leung Helen YL Chan ◽

Carmen WH Chan ◽

Joseph SK Kwan ◽

Susan ZM Yau ◽

Patrick KC Chiu ◽

...

Keyword(s):

Palliative Care ◽

Psychometric Properties ◽

Self Efficacy ◽

Care Needs ◽

Palliative Care Needs

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The Importance of Early Identifications of Palliative Care Needs in Emergency Wards

10.26226/morressier.5c76c8bde2ea5a7237612860 ◽

2019 ◽

Author(s):

Mia Grillfors Mård

Keyword(s):

Palliative Care ◽

Care Needs ◽

Palliative Care Needs

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What makes palliative care needs “complex”? A multisite sequential explanatory mixed methods study of patients referred for specialist palliative care

BMC Palliative Care ◽

10.1186/s12904-020-00700-3 ◽

2021 ◽

Vol 20 (1) ◽

Cited By ~ 1

Author(s):

Anne M. Finucane ◽

Connie Swenson ◽

John I. MacArtney ◽

Rachel Perry ◽

Hazel Lamberton ◽

...

Keyword(s):

Palliative Care ◽

Focus Groups ◽

Healthcare Professionals ◽

Psychological Needs ◽

Care Providers ◽

Specialist Palliative Care ◽

Care Needs ◽

Complex Needs ◽

Sequential Explanatory ◽

Palliative Care Needs

Abstract Background Specialist palliative care (SPC) providers tend to use the term ‘complex’ to refer to the needs of patients who require SPC. However, little is known about complex needs on first referral to a SPC service. We examined which needs are present and sought the perspectives of healthcare professionals on the complexity of need on referral to a hospice service. Methods Multi-site sequential explanatory mixed method study consisting of a case-note review and focus groups with healthcare professionals in four UK hospices. Results Documentation relating to 239 new patient referrals to hospice was reviewed; and focus groups involving 22 healthcare professionals conducted. Most patients had two or more needs documented on referral (96%); and needs were recorded across two or more domains for 62%. Physical needs were recorded for 91% of patients; psychological needs were recorded for 59%. Spiritual needs were rarely documented. Referral forms were considered limited for capturing complex needs. Referrals were perceived to be influenced by the experience and confidence of the referrer and the local resource available to meet palliative care needs directly. Conclusions Complexity was hard to detail or to objectively define on referral documentation alone. It appeared to be a term used to describe patients whom primary or secondary care providers felt needed SPC knowledge or support to meet their needs. Hospices need to provide greater clarity regarding who should be referred, when and for what purpose. Education and training in palliative care for primary care nurses and doctors and hospital clinicians could reduce the need for referral and help ensure that hospices are available to those most in need of SPC input.

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