Jeffrey Kendall, Director, Oncology Support Services, University of M By innesota Cancer Care
Stress associated with a diagnosis of cancer has been shown to induce considerable psychological morbidity, and 25–50 percent of all cancer patients indicate significant levels of distress. Two sub-groups of patients exist within the 25–50 percent of individuals who evidence high distress: those who meet the criteria for psychiatric illnesses such as major depression or adjustment disorders (up to 25 percent of all patients) and patients who report distress levels that do not meet criteria for a psychiatric diagnosis but interfere significantly with quality of life and functional status (15–25 percent of all patients).
Even patients who do not meet criteria for a psychiatric diagnosis may experience worries, fears and other forms of psychological distress that impact daily functioning. Feelings of guilt, loss of control, anger, sadness and uncertainty are common in people with cancer. Further, cancer patients can face spiritual and existential issues involving faith, mortality and the meaning of death. Some cancer survivors report feelings of anger, isolation and diminished self-esteem in response to such stress.
Family members also have psychological needs. A cancer diagnosis for a family member creates fear and concern about the suffering that may be experienced. Caregiver psychological distress can be as severe as that of the person with cancer. Studies of psychological distress in both patients and their caregivers found that the psychological distress was parallel over time, although when the patient received treatment, caregivers experienced more distress than the patient. Thus, helping family members to manage their distress may have a beneficial effect on the quality of life for people with cancer.
All cancer patients, regardless of distress levels, need access to information because the effectiveness of psychosocial and educational interventions for the management of physical, emotional and social stressors in oncology is well documented. People who take part in psychosocial interventions report lower levels of depression and anxiety, as well as improved quality of life and treatment adherence. The use of technology to provide access to oncology patient education is still in its infancy, but some inroads have been made.
Videoconference technology (VT) is increasingly used to provide education regarding disease, treatment and side-effect information for oncology patients and caregivers. Studies have shown VT-based education is equivalent to face-to-face education with regard to the amount of information retained and patient satisfaction with the delivery. Some studies reported increased patient knowledge after VT instruction because they were less anxious receiving the information outside the clinical setting. While most people with cancer prefer face-to-face education, VT allows patients and families to overcome issues such as transportation difficulties, rural isolation, caregiver isolation, lack of mobility and/or illness issues. VT allows cancer professionals to connect with hard-to-reach populations and provide them with the necessary disease and treatment education as well as psychosocial support. Increasing this accessibility helps patients improve their oncology health literacy, treatment adherence, treatment engagement and satisfaction and reduce anxiousness.
Support groups for people with cancer are an evidence-based intervention for dealing with the psychological and social effects of a cancer diagnosis and its treatment. Cancer programs are beginning to use VT for their oncology support groups. Attendance in an oncology support group provides participants with a sense of community in addition to receiving information about managing their cancer diagnosis and the side effects of treatment. As previously stated, attendance to support groups can be difficult for people in both rural and urban communities. Therefore, when patients and caregivers access support groups through a patient portal or smartphone, they gain all the benefits of this intervention and overcome the barriers to participation. Studies have shown participation in VT support groups reduces anxiety and depression related to cancer and provides the opportunity for discussion, reflection and empowerment.
Beyond the use of VT, oncology education is becoming more technologically sophisticated by engaging patients and caregivers with websites and text messaging delivered in conjunction with websites. These internet-based interventions increase access and convenience for patients and caregivers while at the same time, reducing cost to the healthcare system. Studies have demonstrated the effective use of web-based interventions for increasing health behaviors such as smoking cessation, weight-loss and physical activity in people who have completed cancer treatment. Often, the text message will direct the patients back to the website with an embedded link.
Although the internet offers great promise in delivering education and information to cancer patients, the weakness of this approach is the patient or caregiver must go to the website to engage with the program. To overcome any obstacles to initiating this connection, recent interventions have used text messaging or mobile applications to deliver psychosocial and educational interventions. Early studies have shown using text reminders increase compliance with targeted cancer-related symptoms, medication adherence, post-treatment follow-up, and survivorship care recommendations. Additional results of these early studies show the participants found the text messages to be acceptable, easy to use, and an effective way to help them increase these health behaviors.
In spite of advancements in medicine, the physical, psychological, and social impact of cancer is still overwhelming to people with cancer and their families. Due to the aging of our society, greater numbers of people are being diagnosed with cancer, and it is predicted there will be fewer medical professionals available to care for them. Therefore, cancer programs across the country need to integrate various forms of technology to increase access to patient education and psychosocial interventions. The use of technology helps vulnerable populations connect with their cancer care team while lessening the burden on the patient and the care team. The use of technology for the provision of psychosocial care is still in its infancy, but progress is being made.