Introduction: increasing need of paliative care worldwide
At a global scale, the number of deaths caused by chronic, non-communicable diseases – such as cancer, cardiovascular disease or neurological diseases – is constantly increasing(1). In 2016, deaths caused by these diseases accounted for 71% of all deaths worldwide, with cancer alone causing almost 9,000,000 deaths annually(2). In Romania, the percentage of deaths caused by these diseases reaches 92%(2), while the burden felt by society accumulates over 4,626,000 years of life lost only in our country as a result of these serious ilnesses(3).
Population ageing is a process known as one of the most important factors in increasing the incidence of severe chronic life-limiting diseases, including cardiovascular diseases, cancer, diabetes and dementia. In 2009, 15% of Europe’s population was in the age group over 65, but by 2050 this group is expected to represent 25% of the total population(4). As a result, more and more people are experiencing multiple complex symptoms that are difficult to treat towards the end of life and need special care for long periods(4). In Romania, 150,000 people need palliative care annually(5).
The importance of early integration
of palliation in medical oncology
In this context, in which the need for palliative care is constantly increasing, the issue of identifying and evaluating the target group of patients as early as possible is increasingly pressing, in order to establish a long-term management plan for the problems encountered from the initial stages. World Health Organization (WHO) defined in 2002 palliative care as “that holistic approach that improves the quality of life of patients and families facing life-threatening illnesses, by preventing and alleviating suffering, by early identification, impeccable assessment and treatment of pain and other physical, psychosocial and spiritual problems”. According to this definition, we can distinguish three important aspects related to palliative care, beyond its therapeutic role: the role of prevention, the need for early intervention, and the need for impeccable evaluation, in a holistic context. Therefore, palliative care should, in theory, begin when the patient receives a gloomy diagnosis of a potentially life-threatening illness, not only when curative treatments are no longer possible. In the care of incurable cancer patients, there should not be a sudden transition from oncology to palliation, but a continuous adaptation(6).
Unfortunately, the current context of the Romanian medical system – and not only – favors a sequential behavior, of delaying the palliative interventions in patients with incurable diseases. Addressing pain or other symptoms that appear early in the condition is only a small part of a possible palliative intervention, and the real need for palliative care remains unknown in these stages of the disease. It is very widespread, especially among the general population, but also among physicians, the concept that palliation is the last therapeutic resource, reserved for the terminal stage, palliation being very often confused with one of its components, the terminal stages care. According to an IMAS survey conducted at the request of HOSPICE Casa Speranţei in 2010, 99.5% of the interviewed Romanians did not correctly identify or did not know the definition of palliation(7). An edifying percentage when we talk about the need to popularize and raise awareness on the main issues related to palliative care among the general population and beyond.
Palliative care is still insufficiently recognized and used and far from fully integrated, especially in the early stages of incurable diseases, when WHO says it should start. Sustained efforts should be made to identify early and preventively the need for palliative care in patients with incurable diseases with a good performance status, still outside the terminal stage. In 2014, WHO called for the full integration of palliative care into public health systems, as previously recommended by the Council of Europe in 2008.
The necessity of more rigorous screening
of the need for palliative care in patients
with good performance status
The ECOG scale, the most commonly used scale in determining the performance status for cancer patients, although highly predictive of patient prognosis, cannot really describe the real symptom burden in all areas of human activity, but rather the way the patient cope with the challenges posed by the disease. What does an ECOG 0 or 1 performance status tell to a specialist? That the patient appears to be asymptomatic, or has minimal symptoms without major impact, and that the patient is able to continue his/her life in almost the same conditions as before the disease. Is this picture enough to fully understand the patient’s needs holistically? During the anamnesis, does the attending physician have time to identify incipient signs of needs that even the patient may still be unfamiliar with as a level of awareness, but which may later become a burden for him, his family and the care team? Would a screening based on a higher level of physical, spiritual, psychosocial and emotional burden of disease be useful?
The use of the Integrative Palliative care Outcome Scale (IPOS) as a screening tool in cancer patients with good performance status, where at least apparently palliative care would not be necessary, could help a more accurate early and preventive assessment of the need for palliative care, by identifying symptoms, fears and problems encountered by patients undergoing active antitumor treatments or even during remission follow-up periods and, finally, for a better integration of palliative care in oncology.
How do we assess the need for palliative care for patients with life-threatening illnesses? There are, of course, a multitude of tools known and used in current practice, developed specifically for patient assessment: VAS (Visual Analog Scale), ECOG (Eastern Cooperative Oncology Group), ESAS (Edmonton Symptomatic Assessment System), PPS (Palliative Performance Score), BPI (Brief Pain Inventory), PHQ-9 (Patient Health Questionnaire), MMSE (Mini Mental State Examination), FICA (Faith-Importance-Community-Address), genogram(8).
One such relatively recent tool, developed specifically to increase the quality of palliative care outcomes, is the Integrative Palliative care Outcome Scale, derived from the POS (Palliative care Outcome Scale), a set of tools developed in 1999 to be used in patients with advanced disease and to improve the measurement of outcomes by evaluating several essential and important outcomes in palliative care. IPOS represents the integration of the most important questions in POS, POS-S and APCA African POS, and can be completed both by the patient and by professionals in the field(9). The Palliative Care Outcome Scale was developed by the Palliative care Core Audit Project Committee in the UK to measure patients’ physical symptoms, as well as their psychological, emotional and spiritual needs, and to provide information and support for them and the caregivers.
The IPOS scale contains 10 questions. With the exception of questions 1 and 10, for the other questions the answer can be quantified on a numerical scale from 0 to 4, depending on the answer. For example, for a number of symptoms commonly encountered in current practice, the patient may assess with a score of 0 to 4 the severity of these symptoms, 0 being the absence of the symptom, and 4 representing an overwhelming impairment. Similarly, a number of aspects in the psychosocial area are checked, the patient being asked to assess the impact of the investigated problem. At the first question, the patient is invited to express freely the three most important concerns or problems at the moment. In question 10, the patient’s ability to complete this questionnaire alone or with the help of a relative, friend or medical staff is checked, the answer being marked on a scale from 0 to 2 (0 for completion without help, 1 for completion with the help of to a relative or friend, and 2 meaning completion with the help of a medical staff).
IPOS scale literature review
A series of international studies have validated the use of the IPOS scale in current practice. For this literature review, we analyzed the studies published on the PubMed platform in the period 2006-2020, which had as subject the use of the IPOS scale in the current oncology medical practice. We excluded studies that analyzed the use of this scale in other chronic conditions.
In a study published in 2019, conducted in the UK and Germany on 376 patients from several palliative care centers, the research team showed that the IPOS scale confirms “a three-factor structure (physical symptoms, emotional symptoms, and communication/practical problems)” and that “IPOS shows a strong ability to distinguish between clinically relevant groups”, concluding that IPOS is “a valid and reliable scale, both in patient self-reporting versions and in those based on staff report. It can assess and monitor symptoms and concerns in case of advanced disease, determine the impact of medical interventions and demonstrate the quality of care”(10).
In another study, published in 2019, conducted on 142 patients in six palliative care units from Japan, the authors compared the IPOS scale with the EORTC QLQ-C30 scales (European Organization for Research and Treatment for Cancer Quality of Life Questionnaire Core 30) and FACIT-Sp12 (Functional Assessment of Chronic Illness Therapy – Spiritual 12). The conclusion of the Japanese authors was that “IPOS is a valid and reliable tool. The scale is useful for assessing physical, psychological, social and spiritual symptoms, and for measuring the outcomes of adult cancer patients in Japan”(11).
Another very recent study, published in May 2020, by a Portuguese research team, on 1,073 patients, most of them diagnosed with cancer, aimed to “determine patients’ palliative needs and explore the accuracy of screening two elements related to psychological needs (depression and psychological stress)”, using the IPOS scale scan tool. The results of this research showed that “the main palliative needs identified were psychological, family and spiritual. This suggests that clinical teams can better manage physical problems and there is room for improvement in non-physical needs. The use of the IPOS scale could systematically help clinical teams to detect patients for their needs and to monitor their progress in assisting patients and families with these problems”(12).
A retrospective analysis of head and neck cancer patients co-treated by the palliative care service, published in July 2020, in which patients were surveyed using the Integrated Palliative care Outcome Scale questionnaire, showed that the most frequent physical symptoms were weakness (77%), loss of appetite (65%), and poor mobility (65%). Pain was reported by 41% of the patients. The most frequent emotional and psychosocial burdens were depression (97%) and worries about illness or treatment (94%), lack of ability to share feelings (77%), lack of information (85%), and organizational problems (77%). In 23% of patients, advanced directives were available. The authors concluded that “the patients report a high degree of symptoms and stress, most often in emotional areas and in terms of communicative and practical needs. This may reflect a need to talk about wishes and expectations concerning the end of life. Palliative care services should aim to address psychosocial needs in particular”(13).
In Romania, within the Romanian-Swiss research project IZERZO, a mixed Romanian-Swiss team from the “Prof. Dr. Ioan Chiricuţă” Institute of Oncology, Cluj-Napoca, Romania, and the Cantonal Hospital St. Gallen, Switzerland, aimed to collect real data (“reality map”) on the implementation of KI-PCC (Key Interventions of Palliative Cancer Care) and specific indicators of quality of results. KI-PCC comprises the following five factors: 1) understanding the disease and educating patients; 2) detecting/managing symptoms; 3) making decisions (related to anticancer treatments); 4) managing a life-threatening disease/preparing for the end of life; 5) patient and family support network/care plan). These factors could make a substantial contribution to the quality of healthcare and, ultimately, to the quality of life level of patients and their family members. In this study, a validated Romanian version of the IPOS scale was used for the first time. The study started in 2013, but was not completed(14).
The experts of the European Society for Medical Oncology (ESMO) point out that “as most cancer patients are treated in dedicated clinics or hospitals, it is imperative that these facilities provide adequate palliative care and support infrastructure as part of global patient services. The key task of palliative care and support in the cancer center includes screening cancer patients to identify patients with specific needs and the need for real-time palliative care as part of routine cancer therapy”(14). Therefore, ESMO recommends the continuous screening of cancer patients for the early detection of the need for palliative care as a routine measure that must be integrated into global cancer therapy.
The early introduction of palliative care in oncology has shown major benefits to patients, and consequently to their families and care teams(15-19). Screening for palliative care needs should be introduced early in the course of the disease, as soon as possible at diagnosis, detecting difficult symptoms or special needs in the psycho-socio-emotional plane being the target of the medical team that really aims to give the best chances to their patient(20).
IPOS – a scientific validated scale developed to improve the measurement of outcomes by evaluating several essential and important outcomes in palliative care – could be one of the tools used for screening palliative care needs, including patients in the early stages, when the performance status is good.
Conflicts of interests: The authors declare no conflict of interests.