The Content Validity of the Items Related to the Social and Spiritual Dimensions of the Utrecht Symptom Diary-4 Dimensional From a Patient's Perspective: A Qualitative Study

Sita De Vries,Tom Lormans,Everlien De Graaf,Carlo Leget,Saskia Teunissen

doi:10.1016/j.jpainsymman.2020.07.036

Sita De Vries, Tom Lormans + Show 3 more

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https://doi.org/10.1016/j.jpainsymman.2020.07.036

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Abstract

ContextIn palliative care, caregivers often lack words and competences to discuss patients' needs in social and spiritual dimensions. The Utrecht Symptom Diary-4 Dimensional (USD-4D) is an instrument that can be used to monitor symptoms and needs in the physical, psychological, social, and spiritual dimensions and to optimize communication between patients and caregivers. ObjectiveTo assess the content validity of the USD-4D items related to the social and spiritual dimensions from a patient's perspective, measured in terms of comprehensibility, relevance, and comprehensiveness. MethodsAn explorative qualitative study was conducted using in-depth semistructured interviews and thematic analysis. Twelve participants (male N = 7, 53–87 years old) with an estimated life expectancy of less than one year were recruited in two home care services: a general hospital and a hospice. ResultsThe instructions, items, and response options were comprehensible for almost all participants. The meaning that was provided to the items was expressed in themes: maintaining personal identity and autonomy, resilience, letting go, perceived balance in one's life, and death and afterlife. This corresponds with the intended meaning. The items were relevant at some points in time. Not all participants had needs for personal care during the interviews. Participants found the USD-4D comprehensive, no key concepts related to the social or spiritual dimensions appeared to be missing. ConclusionsThe USD-4D constitutes a content valid PROM from the patient's perspective. The items support patients in identifying needs in the social and spiritual dimensions and in the conversation to further explore these needs.

Highlights

In 2019, 149,000 people died in the Netherlands.[1]Approximately 70% of these deaths were expected, which means that around 104,300 patients could have benefitted from palliative care.[2,3] Palliative care aims to optimize the quality of life of patients with a life-limiting illness by relief and prevention of multidimensional suffering.[4,5]In the Netherlands, the National Quality Framework Palliative Care (2017) was developed to optimize palliative care
The results indicate that the Utrecht Symptom Diary-4 Dimensional (USD4D) is content valid from a patients’ perspective and supports communication with caregivers to further discuss individual needs
Despite the existence of the Quality Framework and while the social and spiritual dimensions influence the quality of life considerably,[7,8] the social and spiritual dimensions still appear to be overlooked in clinical practice.[8,9]

Summary

Introduction

In 2019, 149,000 people died in the Netherlands.[1]Approximately 70% of these deaths were expected, which means that around 104,300 patients could have benefitted from palliative care.[2,3] Palliative care aims to optimize the quality of life of patients with a life-limiting illness by relief and prevention of multidimensional suffering.[4,5]In the Netherlands, the National Quality Framework Palliative Care (2017) was developed to optimize palliative care. In 2019, 149,000 people died in the Netherlands.[1]. 70% of these deaths were expected, which means that around 104,300 patients could have benefitted from palliative care.[2,3] Palliative care aims to optimize the quality of life of patients with a life-limiting illness by relief and prevention of multidimensional suffering.[4,5]. In the Netherlands, the National Quality Framework Palliative Care (2017) was developed to optimize palliative care. Despite the existence of the Quality Framework and while the social and spiritual dimensions influence the quality of life considerably,[7,8] the social and spiritual dimensions still appear to be overlooked in clinical practice.[8,9] Caregivers often lack words and the competence to discuss the patients’ needs in these dimensions.[10,11]

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Results

Conclusion