Psychosocial distress refers to the unpleasant emotions or psychological symptoms an individual has when they are overwhelmed, which negatively impacts their quality of life. Psychosocial distress is most commonly used in medical care to refer to the emotional distress experienced by populations of patients and caregivers of patients with complex chronic conditions such as cancer, [1] diabetes, [2] and cardiovascular conditions, [3] which confer heavy symptom burdens that are often overwhelming, due to the disease's association with death. [4] Due to the significant history of psychosocial distress in cancer treatment, and a lack of reliable secondary resources documenting distress in other contexts, psychosocial distress will be mainly discussed in the context of oncology.
Although the terms "Psychological" and "Psychosocial" are frequently used interchangeably, their definitions are dissimilar. While "Psychological" refers to an individual’s mental and emotional state, “Psychosocial” refers to how one's ideas, feelings, and behaviors influence and are influenced by social circumstances. [5] While psychological distress refers to the influence of internal processes on psychological wellbeing, psychosocial factors additionally include external, social, and interpersonal influences. [5]
Psychosocial distress is commonly caused by clinically related trauma, personal life changes, and extraneous stressors, which negatively influences the patient's mood, cognition, and interpersonal activity, eroding the patient's wellbeing and quality of life. [6] Symptoms manifest as psychological disorders, decreased ability to work and communicate, and a range of health issues related to stress and metabolism. Distress management aims to improve the disease symptoms and wellbeing of patients, it involves the screening and triage of patients to optimal treatments and careful outcome monitoring.
However, stigmatization of psychosocial distress is present in various sectors of society and cultures, causing many patients to avoid diagnosis and treatment, in which further action is required to ensure their safety. As an increasingly relevant field in medical care, further research is required for the development of better treatments for psychosocial distress, with relation to diverse demographics and advances in digital platforms.
Common causes of psychosocial distress include clinically related trauma, personal life changes, and extraneous stressors. The unsettling sensations experienced can cause individuals to respond to the stress in different ways, presenting psychological symptoms (e.g., excessive exhaustion, unhappiness, avoidance, dread and worry) that negative impacts an individual's well-being and quality of life. [6] When in psychosocial anguish, an individual may appear detached and avoid interpersonal communication. In addition, the ability to perform up to standard in the workplace can be impacted due to psychosocial discomfort. For example, the patient may find it difficult to stay focused or manage responsibilities sustainably. [6]
Clinical presentations of health issues may be observed, particularly for heart function. As a result of the body's increased release of stress hormones (e.g., cortisol) due to prolonged stress, blood pressure and heart rate will jump significantly. [7] Such histological responses are linked to an increase in:
These clinical health issues often further exacerbate the original psychological symptoms. Furthermore, digestion, metabolism and other crucial bodily functions may be slowed down. [8] [9]
Prior to 2014, the implementation of evidence-based distress screening in the healthcare setting was scarce. In 2014, to increase objectivity in distress screening based on qualitative data, the American Psychosocial Oncology Society (APOS) and Yale School of Nursing (YSN) collaborated to publish the Screening for Psychosocial Distress program, outlining the five steps- Screen, Evaluation, Referral, Follow-up and Documentation/Quality Improvement- to be carried out in psychosocial distress screening. [10]
The Distress Thermometer (DT) is an established self-assessment tool that invites patients to score their perceived level of distress during the previous week on a scale from 0 (no distress) to 10 (severe, intolerable distress). [11] 39 different prompts classified as "Practical", "Family", "Emotional", "Spiritual", and "Physical" categories are utilized to evaluate the wellbeing of patients experiencing psychosocial distress. An average rating of >=4 points is regarded as significant, necessitating additional medical evaluation to determine the best course of medical care.
The recommended practice is to periodically assess ongoing and recovered cancer patients for anxiety and depressive symptoms during the course of their care, according to the Pan-Canadian Screening, Assessment and Care guideline that is sponsored by the American Society of Clinical Oncology (ASCO). [12] [13] The Generalized Anxiety Disorder Scale can be used to evaluate symptoms of anxiety: a score of 0-4 implicates no symptoms, 5-9 implicates clement symptoms, 10-13 implicates moderate symptoms and 15-21 implicates severe symptoms. [14]
With reference to cancer patients in particular, in the event that typical management and treatment does not improve psychosocial distress outcomes, medical care professionals should provide patients with targeted referrals to mental health and social work institutions. [15]
Providing patients with follow up information, discussion and communication with their healthcare providers enables for further reevaluation upon the course of management or treatment that will be followed. Such communication also allows the provision of detailed patient-specific care. [16]
All distress related patient information should be recorded in detail to reliably evaluate the course of the further action, according to the APOS Guidelines. [9]
Psychosocial Distress Management (DM) is mandatory in oncology care for every phase of disease treatment, and it involves screening, assessment, triage, intervention and outcome monitoring. [17] [18] Each stage is personalized based on individual factors of age, race/ethnicity, sex, LGBTQ+, socio-economic status, physical/cognitive limitations, literacy, mental health/substance abuse history, as recommended by the APOS and Association of Oncology Social Work's (AOSW) 2021 consensus panel. [17]
Patients and their caregivers are proactively screened for distress at regular intervals and (optimally) every medical visit, as early detection is essential for avoidance of severe distress symptoms. [18] Frequency of screening increases with the stage of the disease, as the risk of distress increases with severity of disease symptoms. [17] Positively assessed patients are triaged to optimal interventions, while their clinical contacts and referrals are tracked by the health institution to ensure treatment is received. [19] These targeted referrals are made towards optimal evidence-based treatments based on the patient's specific psychosocial symptoms and individual factors, with adherence to the NCCN's 2020 guidelines. [20] [18]
The goal of DM is to relieve mental distress, raise the wellbeing of patients, and improve cancer treatment outcomes. [21] Evidence-based interventions are classified into 1st-line interventions and 2nd-line interventions, whose effectiveness vary depending on the patient's individual characteristics and symptoms. [17]
Type of Intervention | Interventions/Treatments | Examples |
---|---|---|
1st-line Interventions (For moderate to severe distress) | Psychosocial interventions (emotional/cognitive-based) [22] [23] | Cognitive behavioral therapy (CBT) |
Acceptance and commitment therapy (ACT) | ||
Mindfulness-based stress reduction (MBSR) | ||
Medication | Antidepressants, opioid analgesics | |
NSAIDs | ||
Psychoeducation [24] | Stress and self-management training | |
Rehabilitation | Physical therapy | |
Speech therapy | ||
Occupational therapy | ||
Exercise Interventions | Yoga | |
Aerobic exercise | ||
Tai Chi | ||
2nd-line Interventions (For chronic distress in advanced disease) | Group therapy | Meaning-centered group psychotherapy |
Digital health interventions | eHealth self-management programs [25] | |
Mobile applications | ||
Return-to-work interventions | / | |
Other interventions | Music intervention | |
Systematic light therapy [26] | ||
Massage therapy |
These interventions are often administered in combination, in which nonpharmacological psychosocial interventions are recommended over antidepressant medication due to its higher risk-benefit ratio. [27] [17] Development for the use of digital platforms (such as mobile applications, internet-based, virtual reality) in DM is still in its early stages. [28] [29] [30] Outcome monitoring should be conducted to ensure treatment success.
Stigmatization of mental distress and illnesses is prevalent across many sectors of society. [31] This stigma is driven by presumptions that the patient suffering is to blame for their mental disorder, the socioeconomic disadvantages brought by mental illness (e.g., insurance, hiring discrimination [32] ), and by health professionals reluctant to diagnose mental disorders due to such stigmatization, leading to a low level of development in psychiatric research and a low level of confidence in professional treatment effectiveness. [33]
Some cultures (e.g., rural) promote independence and self-affirmation that deter patients from reporting symptoms and receiving treatment. [34] Instead, alternatives such as religion and cognitive reframing (using prayers and narrative construction to encourage self-acceptance) are common coping mechanisms against distress. [32] Hence, in cases where patients decline psychosocial support, educational materials should be provided, accessibility improved via advertising, and comprehensive care integrated in the normal disease treatment. [17]
In the 1990s, under recognition, medical coverage, and treatment of psychosocial symptoms stemmed from heavy stigmatization of the term “Psychological Distress”. [35] As a result, the term "Psychosocial Distress" was coined in 1999 by the National Comprehensive Cancer Network (NCCN), as a means to differentiate between the two and destigmatize such discussion between healthcare providers and patients. [36] At the same time, they released the first psychosocial distress guidelines, where early standards were set for distress management. [37] However, adherence to these guidelines was lacking until in 2015, "Psychosocial Support" was officialized as a criterion in Commission on Cancer (CoC) accreditation by the American College of Surgeons (ACS), which raised universal recognition of distress. [38]
Research is needed for psychosocial care models, care disparities (for vulnerable populations), mental-emotional-relational health, population health (with demographic diversity) and digital health interventions, according to the APOS Roadmap. [39] In addition, there needs to be more research on how metastatic/advanced disease and demographic characteristics (e.g., gender influence [40] ) can impact treatment effectiveness. [17] Following the COVID-19 epidemic (2019-2023), further development of psychosocial crisis prevention and intervention models in an epidemic scenario is essential. [41]
Cognitive behavioral therapy (CBT) is a psycho-social intervention that aims to reduce symptoms of various mental health conditions, primarily depression and anxiety disorders. Cognitive behavioral therapy is one of the most effective means of treatment for substance abuse and co-occurring mental health disorders. CBT focuses on challenging and changing cognitive distortions and their associated behaviors to improve emotional regulation and develop personal coping strategies that target solving current problems. Though it was originally designed to treat depression, its uses have been expanded to include many issues and the treatment of many mental health conditions, including anxiety, substance use disorders, marital problems, ADHD, and eating disorders. CBT includes a number of cognitive or behavioral psychotherapies that treat defined psychopathologies using evidence-based techniques and strategies.
Specific phobia is an anxiety disorder, characterized by an extreme, unreasonable, and irrational fear associated with a specific object, situation, or concept which poses little or no actual danger. Specific phobia can lead to avoidance of the object or situation, persistence of the fear, and significant distress or problems functioning associated with the fear. A phobia can be the fear of anything.
Post-traumatic stress disorder (PTSD) is a mental and behavioral disorder that develops from experiencing a traumatic event, such as sexual assault, warfare, traffic collisions, child abuse, domestic violence, or other threats on a person's life or well-being. Symptoms may include disturbing thoughts, feelings, or dreams related to the events, mental or physical distress to trauma-related cues, attempts to avoid trauma-related cues, alterations in the way a person thinks and feels, and an increase in the fight-or-flight response. These symptoms last for more than a month after the event. Young children are less likely to show distress, but instead may express their memories through play. A person with PTSD is at a higher risk of suicide and intentional self-harm.
Postpartum depression (PPD), also called postnatal depression, is a type of mood disorder experienced after childbirth, which can affect both sexes. Symptoms may include extreme sadness, low energy, anxiety, crying episodes, irritability, and changes in sleeping or eating patterns. PPD can also negatively affect the newborn child.
Palliative care is an interdisciplinary medical caregiving approach aimed at optimizing quality of life and mitigating suffering among people with serious, complex, and often terminal illnesses. Within the published literature, many definitions of palliative care exist. The World Health Organization (WHO) describes palliative care as "an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual". In the past, palliative care was a disease specific approach, but today the WHO takes a broader patient-centered approach that suggests that the principles of palliative care should be applied as early as possible to any chronic and ultimately fatal illness. This shift was important because if a disease-oriented approach is followed, the needs and preferences of the patient are not fully met and aspects of care, such as pain, quality of life, and social support, as well as spiritual and emotional needs, fail to be addressed. Rather, a patient-centered model prioritizes relief of suffering and tailors care to increase the quality of life for terminally ill patients.
In medicine, specifically in end-of-life care, palliative sedation is the palliative practice of relieving distress in a terminally ill person in the last hours or days of a dying person's life, usually by means of a continuous intravenous or subcutaneous infusion of a sedative drug, or by means of a specialized catheter designed to provide comfortable and discreet administration of ongoing medications via the rectal route.
Terminal illness or end-stage disease is a disease that cannot be cured or adequately treated and is expected to result in the death of the patient. This term is more commonly used for progressive diseases such as cancer, dementia or advanced heart disease than for injury. In popular use, it indicates a disease that will progress until death with near absolute certainty, regardless of treatment. A patient who has such an illness may be referred to as a terminal patient, terminally ill or simply as being terminal. There is no standardized life expectancy for a patient to be considered terminal, although it is generally months or less. Life expectancy for terminal patients is a rough estimate given by the physician based on previous data and does not always reflect true longevity. An illness which is lifelong but not fatal is a chronic condition.
Eye movement desensitization and reprocessing (EMDR) is a form of psychotherapy that is controversial within the psychological community. It was devised by Francine Shapiro in 1987 and originally designed to alleviate the distress associated with traumatic memories such as post-traumatic stress disorder (PTSD).
A cancer survivor is a person with cancer of any type who is still living. Whether a person becomes a survivor at the time of diagnosis or after completing treatment, whether people who are actively dying are considered survivors, and whether healthy friends and family members of the cancer patient are also considered survivors, varies from group to group. Some people who have been diagnosed with cancer reject the term survivor or disagree with some definitions of it.
Psycho-oncology is an interdisciplinary field at the intersection of physical, psychological, social, and behavioral aspects of the cancer experience for both patients and caregivers. Also known as psychiatric oncology or psychosocial oncology, researchers and practitioners in the field are concerned with aspects of individuals' experience with cancer beyond medical treatment, and across the cancer trajectory, including at diagnosis, during treatment, transitioning to and throughout survivorship, and approaching the end-of-life. Founded by Jimmie Holland in 1977 via the incorporation of a psychiatric service within the Memorial Sloan Kettering Cancer Center in New York, the field has expanded drastically since and is now universally recognized as an integral component of quality cancer care. Cancer centers in major academic medical centers across the country now uniformly incorporate a psycho-oncology service into their clinical care, and provide infrastructure to support research efforts to advance knowledge in the field.
William S. Breitbart, FAPM, is an American psychiatrist in Psychosomatic Medicine, Psycho-oncology, and Palliative Care. He is the Jimmie C Holland Chair in Psychiatric Oncology, and the Chief of the Psychiatry Service, Department of Psychiatry and Behavioral Sciences, Memorial Sloan-Kettering Cancer Center, He is a Professor of Clinical Psychiatry at Weill Medical College of Cornell University. He was president of the Academy of Psychosomatic Medicine, and the Editor-in-Chief of Palliative and Supportive Care.
Oncology is a branch of medicine that deals with the study, treatment, diagnosis and prevention of cancer. A medical professional who practices oncology is an oncologist. The name's etymological origin is the Greek word ὄγκος (ónkos), meaning "tumor", "volume" or "mass". Oncology is concerned with:
An informal or primary caregiver is an individual in a cancer patient's life that provides unpaid assistance and cancer-related care. Due to the typically late onset of cancer, caregivers are often the spouses and/or children of patients, but may also be parents, other family members, or close friends. Informal caregivers are a major form of support for the cancer patient because they provide most care outside of the hospital environment. This support includes:
Cancer-related fatigue is a symptom of fatigue that is experienced by nearly all cancer patients.
The primary care behavioral health (PCBH) consultation model is a psychological approach to population-based clinical health care that is simultaneously co-located, collaborative, and integrated within the primary care clinic. The goal of PCBH is to improve and promote overall health within the general population. This approach is important because approximately half of all patients in primary care present with psychiatric comorbidities, and 60% of psychiatric illness is treated in primary care.
Pain in cancer may arise from a tumor compressing or infiltrating nearby body parts; from treatments and diagnostic procedures; or from skin, nerve and other changes caused by a hormone imbalance or immune response. Most chronic (long-lasting) pain is caused by the illness and most acute (short-term) pain is caused by treatment or diagnostic procedures. However, radiotherapy, surgery and chemotherapy may produce painful conditions that persist long after treatment has ended.
PTSD or post-traumatic stress disorder, is a psychiatric disorder characterised by intrusive thoughts and memories, dreams or flashbacks of the event; avoidance of people, places and activities that remind the individual of the event; ongoing negative beliefs about oneself or the world, mood changes and persistent feelings of anger, guilt or fear; alterations in arousal such as increased irritability, angry outbursts, being hypervigilant, or having difficulty with concentration and sleep.
Harvey Max Chochinov is a Canadian academic and psychiatrist from Winnipeg, Canada. He is a leading authority on the emotional dimensions of end-of-life, and on supportive and palliative care. He is a Distinguished Professor of Psychiatry at the University of Manitoba and a Senior Scientist at CancerCare Manitoba Research Institute.
Margaret Ruth McCorkle FAAN, FAPOS was an American nurse, oncology researcher, and educator. She was the Florence Schorske Wald Professor of Nursing at the Yale School of Nursing.
The COVID-19 pandemic has impacted the mental health of people across the globe. The pandemic has caused widespread anxiety, depression, and post-traumatic stress disorder symptoms. According to the UN health agency WHO, in the first year of the COVID-19 pandemic, prevalence of common mental health conditions, such as depression and anxiety, went up by more than 25 percent. The pandemic has damaged social relationships, trust in institutions and in other people, has caused changes in work and income, and has imposed a substantial burden of anxiety and worry on the population. Women and young people face the greatest risk of depression and anxiety.
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