Palliative care is an integral part of cancer patient care. There is often a confusion between palliative care, hospice care, and end of life care. Palliative care accounts for more than half of the total period of care provided to a cancer patient, therefore in their current practice oncologists need tools to assess patients’ symptoms and the effectiveness of symptomatic treatment. In this context, the article presents some tools and questionnaires useful in the current practice of the medical oncologist, and especially of the oncologist with competence in palliative care.
palliative care, medical oncology, clinical tools
Îngrijirile paliative sunt o parte integrantă din cadrul îngrijirilor pacienţilor oncologici. De multe ori se face o confuzie între îngrijirile paliative, îngrijirile de hospice şi îngrijirile de la sfârşitul vieţii. Îngrijirile paliative reprezintă mai mult de jumătate din perioada totală de îngrijiri care se acordă unui pacient cu cancer, de aceea în practica de zi cu zi oncologii au nevoie de instrumente de apreciere a simptomelor pacienţilor şi a eficienţei tratamentului simptomatic. În acest context, articolul prezintă câteva instrumente şi chestionare utile în practica de zi cu zi a medicului oncolog, şi mai ales a oncologului cu competenţă în îngrijiri paliative.
An assessment tool is a tool (questionnaire) completed by or with patients or their families, used to collect individual patient data. For example, this may include a structured tool that a provider uses in clinical care to ask about a patient’s symptoms, such as pain or quality of care, or a questionnaire about the impact of a palliative care intervention, or a caregiver’s assessment of how well he or she communicated. Clinical tools help clinicians for delivering high-quality care.
Clinicians will also find, by using these tools, guidance on how to support palliative care, promote role clarity of palliative interventions, and improve practice efficiency.
Some tools frequently used in clinical practice
Edmonton Symptom Assessment System (ESAS) is one of the first quantitative symptom assessment batteries that allow for simple and rapid documentation of multiple patient-reported symptoms at the same time.
The patient is invited to fill out the questionnaire, but this questionnaire can also be completed by the staff (Table 1).
This tool is designed to help assess nine common symptoms in cancer patients: pain, fatigue, nausea, depression, anxiety, drowsiness, appetite, well-being and difficulty breathing (there is also a line labeled “Other problem”). The severity at the time of each symptom is assessed from 0 to 10, on a numerical scale, 0 meaning that the symptom is absent and 10 that it is of the worst possible severity. The patient and family should be taught how to complete the scales. The patient’s opinion about the severity of the symptoms is the gold standard for assessing symptoms. ESAS provides a clinical profile of the severity of symptoms over time. It provides a context in which symptoms can begin to be understood. However, it is not a complete assessment of the symptoms themselves. For good symptom management to be achieved, ESAS should only be used as part of a holistic clinical evaluation.
The patient circles the most appropriate number to indicate where the symptom is between the two extremes (ex.: No pain 0 1 2 3 4 5 6 7 8 9 10 Worst possible pain). The circled number is then transcribed on the symptom assessment chart (see ESAS chart). Synonyms that may be difficult for some patients to understand include the following: depression – blue or sad; anxiety – nervousness or restlessness; fatigue – decreased energy levels; drowsiness – feeling sleepy; well-being – general comfort, both physical and otherwise. Also, the patient must sincerely answer the question: “How are you?”
The frequency of ESAS administration is dictated by the specific needs of the follow-up treatment(1).
Palliative Performance Scale (PPS) is another useful tool in the practice of palliative care. This scale has been widely used for survival prediction among patients with cancer(2).
PPS was developed by Victoria Hospice, being based on the Karnofsky Performance Scale (KPS)(3) (Table 2).
Scale checked items:
Activity and extent of the disease.
“Some”, “significant” and “extensive” disease refer to physical and investigative evidence which shows the degree of progression.
Intake: normal, reduced, minimal.
Consciousness level: full consciousness, confusion, drowsiness, coma.
Pain assessment scales
Pain assessment scales are often used by clinicians of various specialties and in oncology. Given the increased prevalence of pain, this scale is very useful in monitoring the analgesic treatment.
Numerical Rating Scale (NRS).
Visual Analog Scale (VAS).
Adult Non-Verbal Pain Scale (NVPS).
Pain Assessment in Advanced Dementia Scale (PAINAD).
Behavioral Pain Scale (BPS).
Pain Assessment and Management Initiative (PAMI) developed a more complex scale of pain (Table 4).
Because in the treatment of pain the medical oncologist must use morphines, the following questionnaire helps assess the risk for each patient (Table 5).
Screening tools for anxiety
Center to Advance Palliative Care provides essential tools, training, technical assistance and connection for all clinicians caring for people with a serious illness. In this respect, I present the test for anxiety which is a very frequent symptom in oncology and should be detected earlier, because it affects the patients’ quality of life (Table 6).
IPOS is a complex tool for detecting palliative care needs.
The Palliative care Outcome Scale (POS) is a resource for palliative care practice, teaching and research. This website has been established by a not-for-profit organization to help advance measurement in palliative care. Free resources and training are available.
The POS measures are a family of tools to measure patients’ physical, psychological, emotional and spiritual symptoms, along with information and support needs. This is a validated instrument that can be used in clinical care, audit, research and training.
The POS measures are specifically developed for use among people severely affected by diseases, such as cancer, respiratory, heart, renal or liver failure, and neurological diseases.
The POS measures are widely used, including in Europe, Australia, Asia, Africa and America.
POS can be downloaded from the internet and is available in 12 languages, including English.
IPOS Staff Version
Patient name: …………………………………………..………
Date (dd/mm/yyyy): …......................……………..………
Patient number: ……………………….…...… (for staff use)
Q1. What have been your main problems or concerns over the past 3 days?
Q2. Below there is a list of symptoms which you may or may not have experienced. For each symptom, please tick one box that best describes how it has affected you over the past 3 days.
POS linguistic validations
POS administration declare that “the process of linguistically validating measures is lengthy and involves a number of important steps. To date, POS has been translated into 11 languages to advance the use of measurement tools for those who require palliative care”.
IPOS was also translated into Romanian, following all the steps necessary to validate this questionnaire in a language other than English(7).
Looking at Figure 1, it can be seen that palliative care occupies or should occupy a larger space than current antitumor therapy. This fact justifies the efforts that need to be directed towards the planning of palliative care services, which will be integrated into the medical oncology system. This therapy must have a strong social support. To achieve this goal, it is important to have a conceptual understanding of the meaning of integrated care and its expression in organizational models for the provision of palliative care. In Romania, the role of integrating medical oncology with palliative care belongs to the medical oncologist who has acquired competence in palliative care as well. In this article, I have tried to define some tools for investigating the need for palliative care for cancer patients, as well as useful tests in assessing the results of palliative care. Observing the complexity of these tests results in the need for a well-established experience, on the part of the medical oncologist, for their application. This reveals the need to acquire a well-established knowledge, at university level, which the medical oncologist can obtain only in a separate educational system from the resident in medical oncology, a system that leads to the acquisition of a competence in palliative care.
Conflict of interests: The author declares no conflict of interests.
Baik D, Russell D, Jordan L, Dooley F, Bowles KH, Masterson Creber RM. Using the Palliative Performance Scale to Estimate Survival for Patients at the End of Life: A Systematic Review of the Literature. J Palliat Med. 2018 Nov;21(11):1651-1661.