|Year : 2022 | Volume
| Issue : 3 | Page : 193-198
Mental Health Care for Cancer Patients in Portugal – Implementation of a Psycho-Oncology Multidisciplinary Project
Ines Donas-Boto, Sara Teixeira, Maria De Fátima Urzal
Psychiatry and Mental Health Service, Western Lisbon Hospital Centre, Lisbon, Portugal
|Date of Submission||22-Dec-2021|
|Date of Decision||31-May-2022|
|Date of Acceptance||01-Jun-2022|
|Date of Web Publication||21-Dec-2022|
Dr. Ines Donas-Boto
Estrada Do Forte Do Alto Do Duque, Lisbon 1449-005
Source of Support: None, Conflict of Interest: None
Psycho-oncology is an interdisciplinary field that addresses the two major psychological dimensions of cancer: the psychological responses of patients to cancer at all stages of the disease, and that of their families and caretakers, and the psychological, behavioral, and social factors that may influence the disease process. It contributes to the clinical care of patients and families, to the training of staff in psychological management, and to the collaborative research that ranges from the behavioral issues in cancer prevention to the management of psychiatric disorders and the psychosocial problems during the continuum of the cancer illness, including end-of-life care. There is scientific evidence of the benefits of providing psychosocial cancer care as part of standard care in reducing distress and psychosocial morbidity associated with cancer and in fostering a better quality of life during and after treatment, and eventually in increasing survival. Because of the undeniably growing prevalence of cancer, its relationship with emotional distress and psychiatric comorbidity, and its impact on the quality of life of oncologic patients, their families, and health professionals, the need for mental health services for cancer patients is real and urgent. With this essay, the authors intend to present a brief narrative review of the scope and aims of psycho-oncology, clinical practice guidelines for the psychosocial care of cancer patients, and the authors' experience in the implementation of a multidisciplinary project of a psycho-oncology consultation in a central hospital, in Lisbon, Portugal.
Keywords: Mental health services, oncology, psycho-oncology
|How to cite this article:|
Donas-Boto I, Teixeira S, Urzal MD. Mental Health Care for Cancer Patients in Portugal – Implementation of a Psycho-Oncology Multidisciplinary Project. World Soc Psychiatry 2022;4:193-8
|How to cite this URL:|
Donas-Boto I, Teixeira S, Urzal MD. Mental Health Care for Cancer Patients in Portugal – Implementation of a Psycho-Oncology Multidisciplinary Project. World Soc Psychiatry [serial online] 2022 [cited 2023 Feb 4];4:193-8. Available from: https://www.worldsocpsychiatry.org/text.asp?2022/4/3/193/364588
| Mental Health Services for Cancer Patients Why?|| |
Oncologic illnesses are the second leading global cause of death, accounting for an estimated 9.6 million deaths, or one in six deaths, in 2018. According to the World Health Organization, in 2018, Portugal presented an incidence of 58199 cancer patients and a prevalence in 5 years of 155,645 cases. It is predictable that, by 2040, the number of new cases per year rises to 68965. There has also been a rise of cancer survivors, with the death by cancer risk, before 75 years old, presently being 10.7%.
Despite the numerous scientific and technological advances for its prevention, early diagnosis, and treatment, cancer remains an emotionally demanding illness, not only for the patients but also for their family and caretakers. Cancer patients and cancer survivors present a high rate of psychiatric comorbidity. More than 50% of patients present psychological distress, defined by the National Cancer Center Network (NCCN) as a multifactorial unpleasant emotional experience of a psychological (cognitive, behavioral, and emotional), social, and/or spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms, and its treatment, as well as the quality of life and functionality of the oncologic patient, in his personal, family, social, and working life. The emotional adjustment to the diagnosis and treatment of cancer is influenced by several factors, for example: family, friends, and religious beliefs have been reported to be important in providing hope, but clinical uncertainty has been found to reduce hope significantly; high levels of social support clearly assist in coping (Level III-2); and younger patients may be particularly vulnerable to emotional distress.,,
A psychopathological condition can be diagnosed in 25%–30% of patients by using the usual nosology systems of psychiatric classification, with the most common diagnoses including stress-related and adjustment disorders, depressive spectrum disorders, anxiety disorders, and sexual disorders. Recent evidence shows that psychological therapies improve emotional adjustment and social functioning, and reduce both treatment- and disease-related distress in patients with cancer, and that both supportive and cognitive behavioral therapies are effective in the treatment of depressive disorders in patients with cancer (Level I), and the efficacy of both individual and group therapies (Level I).
Acknowledging that a high percentage of cancer patients suffer from emotional symptoms (as health anxiety, irritable mood, and demoralization) or psychopathological conditions (as major depression and posttraumatic stress disorder) is extremely important, so that cancer care professionals can provide adequate care in oncology. Therefore, with this essay, the authors present a narrative review of psycho-oncology and its current clinical practice guidelines, as well as our experience in implementing a psycho-oncology multidisciplinary project in a central hospital, in Lisbon, Portugal.
| Psycho-Oncology|| |
Psycho-oncology first steps dates from the mid-1970s when cancer treatments started to evolve, and the stigma that linked the word “cancer” to “death sentence,” started to diminish. Since then, psycho-oncology became a growing subspecialty of oncology and of psychosomatic medicine, involving professionals from diverse disciplines and medical specialties, with its own body of knowledge contributing to cancer care. Its formal recognition as a subspecialty took place in 1992, and its main objectives are: to integrate psychological care into the total care of all patients with cancer, at all levels of illness, and of their families, by all health professionals in oncology; to heighten awareness of the psychological and social problems associated to cancer at all levels of illness; to give attention to humanistic, ethical, and spiritual values in patient care; to foster the concept of broad treatment goals which include quality of life and well-being, and seeking to attain a disease-free state that includes achievement of functional outcome in the major domains of life (rehabilitation); to encourage quality of life as an outcome variable in clinical trials research; to encourage controlled trials of psychotherapeutic, behavioral, and psychopharmacologic interventions with cancer patients; to study psychological, social, and behavioral factors in cancer prevention and detection, and their impact on survival; to advocate for resources designed to reduce cancer risk and to promote optimal rehabilitation and survival; to study the psychological stresses on health-care professionals who provide oncologic care and how to avoid an adverse impact on their well-being and on the quality of care they render; to develop training curricula in psycho-oncology which contain a common core of information relevant to all professionals, and specific components to address the particular educational needs of specific oncologic disciplines (oncologist, nurse, and social worker) to assure psychological principles of good care are incorporated into total care, and to educate and train of a group of clinicians and investigators whose special expertise is identified as psycho-oncology; and to foster cross-cultural research in which the universal stresses of cancer are studied in relation to the influences of cultural factors in adaptation.
In summary, the scope and activities of psycho-oncology can be outlined in four broad areas: identification of psycho-oncology as a core part of the services offered in patient care; growth of educational and training programs; research specifically addressing psychosocial issues; and publications of research and scholarly papers in the field.
| Standard of Care|| |
In June 2010, the International Psycho-Oncology Society (IPOS), the multidisciplinary international body responsible for the psychological, social, and behavioral issues in cancer, determined that there is sufficient evidence and experience available to propose a new international quality standard:
- Psychosocial cancer care should be recognized as a universal human right
- Quality cancer care must integrate the psychosocial domain into routine care
- Distress should be measured as the 6th Vital Sign after temperature, blood pressure, pulse, respiratory rate, and pain.
The implementation of such standards may have a synergistic effect upon international and national efforts to improve psychosocial cancer care.
| Clinical Practice Guidelines for the Psychosocial Care of Cancer Patients|| |
Clinical practice guidelines are defined as “systematically developed statements to assist both practitioner and patient decisions about appropriate health care for specific clinical circumstances.” Their goal is to improve the quality of health care by identifying and promoting the adoption of the best care practices.
Psychosocial health services are defined as psychological and social services and interventions that enable patients, their families, and their health-care providers to optimize biomedical health care and manage the psychological and social aspects of illness and its consequences.
The NCCN recognized the need for an integration of psychosocial supportive services and the need for practice guidelines for the professionals who provide cancer care. The NCCN principles and practice guidelines were the first set of clinical practice guidelines for psychosocial and spiritual care developed with full participation of all the supportive care disciplines (psychiatry, psychology, chaplaincy, social work, and nursing), as well as oncology and patient advocacy. These guidelines give an algorithm for rapid identification of patients with significant distress leading to referral to appropriate services when significant distress is found: the term distress is used as a global term to refer to psychosocial or spiritual issues; the level of distress should be assessed at each visit; the primary care team manages normal levels of distress; when a patient indicates a distress level of 5 or above, the patient must be referred to one of the specialized supportive services, as the level of 5 or above is comparable to a significant distress level on the Hospital Anxiety and Depression Scale (HADS); physicians and nurses must be trained to use rapid screening methods to ensure that patients are asked at each visit about their level of distress; must be able to use the algorithm to refer patients to community resources for psychosocial services; and must be trained in how to communicate with patients and families in an empathic, compassionate, and supportive manner; patients and their families must be educated about the fact that psychosocial and spiritual services are an integral part of total care and should experience no discontinuity between their medical and supportive services; and psychosocial services must be available for all cancer patients.,, The Institute of Medicine (IOM) also issued guidelines to ensure a standard of quality cancer care of psychosocial services, that must be able to identify psychosocial needs; link patients and families in managing illness; support patients and families in managing the illness; coordinate psychosocial and biomedical care; follow up on care delivery to monitor the effectiveness of services; and make modifications if needed. Similar to the IOM report, the National Institute for Health and Care Excellence (NICE) report comprises a series of recommendations and descriptions of various service models designed to ensure that patients and their families receive support and care to help them cope with cancer and its treatment at all stages, highlighting that the providers must ensure that all patients undergo systematic psychological assessment at key points in their illness and have access to appropriate psychological support. The National Cancer Control Initiative in Australia issued the Clinical Practice Guidelines for the Psychosocial Care of Adults, that are presented as a series of recommendations, accompanied by identification of the levels and sources of research support for each recommendation.
These reports and guidelines have the potential to improve the quality of psychosocial care received by cancer patients, by specifying standards of care and identifying clinical pathways. However, the NCCN guidelines, and the IOM and NICE reports, have limitations with regard to the use of evidence, with many of the recommendations identified as being based on lower-level evidence or no formal evidence of benefits.
| Implementation of a Multidisciplinary Project of Psycho-Oncology|| |
Although the benefits of mental health care for cancer patients are well known and internationally recognized as part of the routine care for oncology patients, this kind of multidisciplinary intervention does not exist in an organized fashion in most of the Portuguese general hospitals. Whether it is due to lack of personnel, proper organization of mental health-care departments, funding, or recognition of its importance, psycho-oncology in Portugal still has a long way to go.
The present author works in a general central hospital center in Lisboa, as a Psychiatry trainee, where the oncology department has currently over 3500 cancer patients in active follow-up.
Even though there has always been cooperation between the oncology department and the liaison psychiatry unit, it was only in late 2019, that psycho-oncology consultation formally began its work, with the creation of a psycho-oncology multidisciplinary project. The project was developed by the present author, a psychologist, and the liaison psychiatry unit director of the said hospital. It is in line with the four main areas that psycho-oncology focuses on; is based on the NCCN, NICE, and Australian guidelines; and has the main goal of implementing the IPOS standard of care in the day-to-day clinical practice.
The psycho-oncology consultation is integrated in the liaison psychiatry unit, psychiatry and mental health department, in close articulation with the oncology department. The team is directed by a senior psychiatrist, and it includes a psychiatry trainee and a psychologist, both with specific, formal, and internationally recognized training in psycho-oncology.
Aims and scope
The project objectives are prevention of psychological dysfunction in all stages of the disease; improvement of therapeutic compliance; prevention, reduction, and management of psychological distress; prevention, reduction, and management of psychiatric conditions in cancer patients and their relatives; and promotion of adequate coping strategies and healthy lifestyles.
Articulation with other departments
The psychooncology team must be a part of the cancer patients' routine care, working with the oncology department, by participating in multidisciplinary meetings as a member of the oncology clinical team and in activities for cancer patients and their families; and with the oncology's nutrition department, aiming to promote lifestyle changes in cancer patients and survivors; oncology's social service; palliative care unit, when working with cancer patients.
The referral can be made by any doctor from any department that manages cancer patients, and the patient must be informed and accept the referral. It must include cause of referral, diagnosis and staging, treatment plan, previously known psychiatric conditions, and usual medication.
Eligibility and exclusion criteria
The psychooncology consultation is meant for cancer patients and their main caretakers that meet the following criteria: age 18 or above; cancer investigation/oncology care provided by Centro Hospitalar Lisboa Ocidental (CHLO); severe mental illness or psychopathological symptoms derived from the cancer diagnosis. Cancer patients with previous mental illness that are under active psychiatric followup that they intend to maintain, are excluded from this consultation.
The patients must be evaluated in a systematic way, through symptom and specific questionnaires, with the goals of evaluating in a systematic and objective way the patients' symptoms and monitoring clinical evaluation.
Evaluation before consultation must contemplate the distress thermometer with the level of distress being assessed at each visit. It can be applied by any member of the patient's clinical team, and must be applied at the time of referral, and if the patient presents moderate-to-severe distress (over 5), the patient must be referred to the psycho-oncology consultation. In the first consultation, the HADS must be applied. In case of relatives in bereavement, the Prolonged Grief Disorder-13 must be applied, as well as the Maslach Burnout Inventory, for relatives in burnout. At the time of consultation discharge for symptom remission, the HADS, and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core-30, must be applied.
The psychological consultation is targeted for patients which, after cancer diagnosis, present with: significant emotional suffering; stress induced by medical procedures; depressive symptoms; anxiety symptoms; sleep disturbances; acute stress symptoms; posttraumatic stress symptoms; psychomotor agitation (mild); behavioral changes (mild); self-harm or suicidal ideation; substance use; organic or mixed symptoms that are unresponsive to medical treatment; disturbances on self-image, sexual, or other bodily functions; disturbances on family/interpersonal/social/work roles; poor treatment compliance; previous mental illness; and presence of residual psychological suffering that restrains full psychosocial adaptation/rehabilitation. The referral criteria for relatives include caretaker burnout; bereavement; self-reported psychological distress or inability to deal with specific needs of their relative. Regarding follow-up criteria, the authors considered the presence of significant psychological distress derived from cancer diagnosis/treatment (patient or relative); significant psychological distress derived from oncologic family risk; and previous psychopathological symptoms with exacerbation due to cancer diagnosis or treatment (patient or relative). Discharge is considered when follow-up criteria are not met; the psychiatric condition is in remission; or consultation absence for more than a year (or more than 3 absences in a row).
Psychiatry referral criteria include anxiety conditions (moderate-to-severe); mood conditions (moderate-to-severe); psychotic conditions; substance use; psychomotor agitation; behavioral changes; self-harm or suicidal ideation; and previous severe mental illness diagnosis; and cancer relatives with caretaker burnout or risk of pathological bereavement. Patients or relatives with psychiatric conditions derived from cancer diagnosis/treatment or from oncologic family risk, or with previous psychiatric conditions with symptom exacerbation due to cancer diagnosis or treatment, are considered for follow-up. Patients meet discharge criteria when in remission of psychiatric condition, when they do not meet follow-up criteria or when are absent from consultation for more than a year (or more than 3 absences in a row).
For the near future, the project authors aim to create: educational material about oncologic fatigue, “chemo brain,” sleep hygiene, self-care, and healthy lifestyles; open lectures for cancer patients and their families with the intent of explaining and clarifying doubts about the concept of distress, self-care, and healthy lifestyle benefits; clinical research projects with the oncology department; scientific publications; and professional educational programs. In the long term, the authors would like to implement: group therapy, namely for young cancer patients (ages 18–39), survivors, family members, and a bereavement group; a multidisciplinary consultation for neurocognitive symptoms, in articulation with the oncology and neurology departments; and a multidisciplinary consultation for oncologic fatigue symptoms, in articulation with the oncology and physical and rehabilitation departments.
Evaluation of services
Satisfaction of the program's users, as well as the health-care professionals, is important for the efficiency and improvement of the project. To evaluate the efficiency and satisfaction with the program, the following metrics should be assessed: satisfaction with the program – through qualitative and open-answer questionnaires for cancer patients, families, and health-care workers; rate of incidence and prevalence of mental disorders, comparing the results with available data; number of consultations specifying: number of referrals; number of consultations between health-care providers; number of consultations per patient until discharge; and HADS Score variations (1st evaluation – at discharge). This evaluation should take place every 2 years.
Since the projects' formal beginning in October 2019, there have been more than 1000 psycho-oncology psychology consultations and 150 psycho-oncology psychiatry consultations that represent 250 patients and 50 patients, respectively. The psychology consultation gets most of the referrals and acts almost like a triage for the psychiatry consultation, with 35% of the patients being referred to a psychiatric evaluation. Regarding the psychiatry consultation, 85% of the referrals come from the psychology consultation and the vast majority of the patients present with depressive or anxiety disorders, with the need for a pharmacological intervention.
Almost 2 years has passed since the project's presentation and implementation. It had a slow start due to several limitations and setbacks, namely:
Geographical limitations – The hospital center comprises three hospitals in different geographical areas, with the oncology and psychiatry department being in two different hospitals. Although the psychology consultation takes place in the oncology department, the psychiatry consultations do not. This causes a distance barrier and may heighten a “mental illness stigma” barrier, demanding “more time in hospitals” for cancer patients, since most of their consultations, treatments, and medical examinations are performed in the same hospital of the oncology department, and are ideally scheduled for the same day. This physical distance is also problematic regarding patients' clinical discussion between professionals of both departments and the ongoing education of oncology care professionals that is an essential part of psycho-oncology.
Human resources limitations – As mentioned earlier, this team is formed by three professionals: a psychologist, that works not only in psycho-oncology but also in general liaison psychology consultation; a psychiatry trainee, that has very limited time assigned to the psycho-oncology consultation due to mandatory residency demands; and a senior psychiatrist, the liaison department director, that oversees a department of two psychiatrists, for three different hospitals. The limited time that each of these professionals has assigned to psycho-oncology has an inevitable impact on the kind of services and support that the team can offer to cancer patients and their relatives but also on the implementation of more specialized projects.
COVID-19 – Shortly after the formal beginning of the project, the COVID-19 pandemic started. With the COVID-19 superimposed health needs, oncology clinical activity suffered: there were less referrals from primary care doctors to the oncology department, less consultations and surgeries, and more patient's absence due to COVID-19 fear. A significant number of consultations were performed by phone that makes the evaluation of emotional distress more difficult and prevents the use of the distress thermometer. As a result, the psycho-oncology team received less referrals and had a significant number of absences, especially for first evaluation consultations, and the articulation between departments was reduced to episodic discussion of specific clinical cases. With the anticipated end of the pandemic, it is expected that clinical activity will resume its normality.
Distress thermometer use – despite its recognized validity and importance, there is still a lot of resistance from the oncology care providers to use it routinely. Even though assessing distress routinely with the distress thermometer might seem like a small task to ask to the oncology professionals, it has been very hard to implement it successfully. In a country where, in 2019, 66% of doctors were in burnout and the public health system is underfunded, it is very difficult to implement a highly specialized care, even if that care is internationally recognized as part of standard cancer care. The authors believe that with proper educational lectures, the distress thermometer routine use will grow between oncology professionals.,
| Conclusion|| |
Cancer has significant psychosocial consequences for both patients and their families. Despite good evidence for the effectiveness of services in meeting patients' psychosocial needs, cancer care often fails to address these needs. The reasons for this failure include the tendency of oncology care providers to underestimate distress in patients, stigma toward mental illness from health-care professionals and cancer patients, lack of general awareness for the effectiveness of psycho-oncology, and lack of financial investment in this type of care.
In the authors' personal experience, the psycho-oncology multidisciplinary project was welcomed with great enthusiasm by the oncology department, and slowly, the number of referrals is rising and the proximity between departments is growing. The various limitations to the continuous growth of this project are, in general, the same difficulties reported worldwide. However, the importance and relevance of this project requires us to overcome those obstacles.
Optimal cancer care demands optimal psychosocial care of people with cancer, and it is best provided when all those involved have a detailed understanding of the challenges faced by a person with cancer.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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