Tonight's picture was taken in October of 2008. I know it was a Friday because of the activity we were doing. The University's chemistry club always came to the pediatric units every Friday and with them came a hands on experiment. Chris was the Club's president and Mattie got along splendidly with him. Mattie looked forward to chemistry club experiments and when he wasn't able to go to the hallway, Chris would come into Mattie's room to repeat the experiment. That day, the Club made ice cream using dry ice. Participating with Mattie was his best buddy in cancer, Brandon.
Quote of the day: Today's coronavirus update from Johns Hopkins.
- Number of people diagnosed with the virus: 43,548,632
- Number of people who died from the virus: 699,647
I started taking a medication prescribed by an endocrinologist for low bone density. Apparently my bone loss is significant for someone my age. I have to take this medication weekly for five years. Given that most of the women on my mom's side have osteoporosis, the doctor feels that my issues are solely genetic related. Wonderful. Needless to say, this drug gave me a one two punch today. With bone pain, muscle aches, nausea, and overall feeling crummy. I can't believe I have this to look forward to weekly on top of everything else.
Despite feeling crummy, the world doesn't stop on the Farm. Sunny needed to be walked with his sling, laundry and grocery shopping had to get done, and I am still dealing with touch up painting. Oh and not to forget conference calls.
Given how I am feeling, I wanted to leave you with a very interesting article below. The article focuses on adult cancer, none the less, there are overlaps with childhood cancer. Specifically that providing psychosocial care to patients is a must and at the end of the day patients are NOT getting the support they need. So much for 21st century medicine. Psychosocial support has been shown to directly impact health outcomes and quality of life. Several of the key points I underlined. But it makes me think that the psychosocial referral and resource initiative I pitched on Shark Tank is spot on!
No-Cost Counseling Can Address Psychosocial Needs of Patients With Cancer; September 25, 2021; Denise Myshko
OncologyLive, Vol. 22/No. 17, Volume 22, Issue 17
Depression, anxiety, and other mental health disorders are not uncommon among patients diagnosed with cancer. Counseling, psychotherapy, and mental health services provide the opportunity for patients to develop coping skills and inspire hope; however, patients often experience hurdles to accessing such care. Among these obstacles are cost, unawareness that programs exist, the COVID-19 pandemic, and other external factors.
Many cancer institutions offer free services that include support groups, programs and seminars on stress management, and yoga for patients with cancer. Few practices offer comprehensive, individual counseling and psychotherapy at no cost. If counseling services are offered, they are typically billed to insurance companies, leaving patients to cover the costs of deductibles and copays.
Incurring additional costs may not be an option for patients already struggling with the costs of cancer treatments. According to results of a study published in 2018 in the Journal of Oncology Practice, 26% of adults with cancer reported financial toxicity, which was associated with an increased risk for medical noncompliance.1 Specifically, patients were less likely to fill their medications, attend office visits, and undergo recommended medical tests.
Further, an analysis presented at the 2020 American Society of Clinical Oncology Virtual Scientific Program showed that patients with recurrent ovarian cancer at high risk of struggling financially because of ongoing treatment costs or potential loss of income scored higher on measures for depression and anxiety and lower on quality of life.2
High costs and insurance coverage are significant barriers to seeking counseling, but providing accessible mental health services to patients is important for their healing, said Barry Russo, MBA, CEO of The center for Cancer & Blood Disorders in Fort Worth, Texas.
“We knew from our original approach of referring people out to psychologists and psychiatrists that many didn’t go,” Russo said in an interview with OncologyLive®. “Removing financial hurdles opens the door for people to seek psychological support who otherwise wouldn’t.” This understanding led the center to launch a different type of counseling and psychotherapy program in 2016. Funded in part by the Careity Foundation in Fort Worth, the program is operated on-site at the center and is of no cost for patients. “We knew that if we were going to start a program, we did not want any financial hurdles,” Russo said. “We wanted them to access this without a concern about the costs involved.”
A Snapshot of Mental Health
Estimates of the prevalence of depression and anxiety among patients with cancer varies, but several studies generally show approximately one-third of patients with cancer have some type of mental health issue. Investigators reported in 2014, for example, that approximately 32% of patients with cancer were diagnosed with at least 1 mental disorder; anxiety disorders (11.5%) and mood disorders (6.5%) were the most common.3
In a subsequent study from 2018, investigators found that depression and anxiety affects up to 20% and 10% of patients with cancer, respectively, compared with 5% and 7% for the general population.4 The prevalence is highest at diagnosis and at the beginning of treatment. Investigators found that poor recognition of depression and anxiety is associated with reduced quality of life and survival.
The COVID-19 pandemic has added to the mental health struggles patients with cancer experience. For example, 53% of surveyed patients with cancer (n = 606) reported experiencing loneliness in recent months and higher symptom severity scores for all the symptoms evaluated, according to a new survey published online in May in Cancer (Figure).5
From the early analysis, investigators found patients in the lonely group reported higher levels of social isolation, as well as more severe symptoms of anxiety, depression, fatigue, sleep disturbance, cognitive dysfunction, and pain.
“There is a really robust literature about the impact of loneliness and social isolation on morbidity and mortality in cardiovascular disease, but it hasn’t been studied in cancer,” lead author Christine Miaskowski, PhD, RN, FAAN, said. Miaskowski is the Sharon A. Lamb Endowed Chair in Physiological Christine Miaskowski, PhD, RN, FAAN Nursing and a professor in the Department of Physiological Nursing at the University of California, San Francisco.
“It is clear that if you take out all the other risk factors for mortality in cardiovascular disease, loneliness and social isolation make independent, significant contributions to morbidity and mortality,” she said. “If the association holds with what we see with cardiac disease, the stress from loneliness can impact patients with cancer and their disease progression.”
Miaskowski noted that respondents were mostly women, White, and wealthy. The survey is continuing, and approximately 1100 patients have completed the questionnaire so far. “I want to know about what is happening with the people who are less well served,” she said.
Caring for the Whole Patient
The association between cancer survival and mental health is just beginning to be understood, and early studies have demonstrated that investment in mental health and social needs has a strong correlation with improved health outcomes. “There is a growing consensus that mental health plays a significant role in oncology care,” Chris Murray, PhD, a psychotherapist who helped launch the center’s program, said.
A study of veterans with non-small cell lung cancer who had preexisting mental health disorders found that mental health treatment programs, housing programs, and employment support programs were associated with improved lung cancer–related outcomes.6 Participation in a mental health program was associated with a significant decrease in all-cause mortality and lung cancer–specific mortality across every mental health diagnosis evaluated. Investigators suggested that seeing mental providers enabled patients to engage more with their non–mental health medical treatment.
The need for counseling and psychotherapy is much greater than anyone would expect, said Beverly Branch, cofounder of Careity Foundation. “People can’t heal physically if they aren’t healed psychologically,” she said.
Providing mental health services to patients with cancer is critical, especially now because of COVID-19, said Lyn Walsh, cofounder of Careity Foundation. “There are patients who are just so overwhelmed,” she said. “Psychotherapy was something that we used to offer patients. Now we get calls requesting someone to talk to.”
For patients with cancer, chemotherapy, radiation, and financial burdens can cause depression and hopelessness, said Vernesa Perry, PhD, who conducted the research for her dissertation at the center. “People who have had full lives may now find getting out of bed is an accomplishment,” she said. “They struggle to accept their new normal. It is so complex, and there really is a need for therapy services in the oncology setting because research shows it really has a big impact.”
Perry’s dissertation looked at whether a solution-focused narrative model of therapy could provide a more hopeful outlook for patients with cancer. This model counseling looks toward solutions instead of discussing problems at length. In her analysis, Perry noted that patients in the traditional therapy group did not return after one session, with one patient saying that there was too much negativity in the group in a follow-up call. Those in the solution-focused group, however, highlighted the importance of such a group.
“A solution-focused narrative therapy is a short-term model that has been shown to work in 1 to 3 sessions,” Perry said. “This becomes more helpful in the cancer setting because we don’t know if that patient is going to come back.
“Traditional therapy models are designed to be long term. They can be effective, but my experience at the cancer hospital showed that for patients with cancer, you may not have that luxury of time. At the center we were also flexible with scheduling. If I have a patient that is supposed to come after chemotherapy or radiation, there is a high chance they won’t be able to make it because they don’t feel well.”
Aid at the Community Level
Services such as group therapy or private counseling can provide patients with needed support, but patients may not know where to get help or they may not have insurance coverage. There are no national data around how many community oncology practices offer counseling or mental health services, according to the Community Oncology Alliance.7 Anecdotally, services vary by geographic area, and many are billable services.
Murray said that in the Dallas–Fort Worth metroplex, few institutions or direct providers of mental health services specifically for patients with cancer offer services at no cost to the patient. “The big hospital providers also provide mental health services but those are not grant funded or no cost to patients,” he said. “Typically, they are insurance-covered services that are subject to copays and deductibles.”
Branch said it’s important to make the counseling accessible to all patients regardless of insurance status. “If it isn’t, people won’t take advantage of it because of all the other expenses they have and because of complication of their treatments,” she said. “We’ve had patients say the counseling was the greatest gift they had received from us.”
SPOTLIGHT ON THE CENTER’S PSYCHOTHERAPY PROGRAM MODEL
The center’s program is staffed by Murray and graduate-level behavioral health providers. Murray was brought on in 2016 to develop the psychotherapy program and provide oversight of providers.
The team of behavioral health providers includes graduate-program clinical training students, licensed providers, doctoral research candidates, and volunteers. “The program helps to provide training to future psychologists on how to help patients [with cancer],” Russo said. “We wanted to provide services for the patients, but we also wanted to provide a training ground for psychologists to have experience with the challenges that patients with cancer face. We want to be able to have an educated force of psychologists that can help patients all over Dallas–Fort Worth.”
Behavioral health services are provided to patients at all of the center’s 9 locations. In the 5 years the program has been operational, the center has provided services to approximately 800 patients, offering more than 5000 hours of session time.
“We believe this approach is targeted for those in need of behavior health intervention,” Murray said. It’s in-house, and it’s there when and where patients need it.”
The services provided have been developed specifically for patients with cancer because most programs and outside counseling services, although beneficial, may not be specific to this population’s specific needs.
“A typical provider would be able to provide services that cover a lot of the things we see, such as depression, anxiety, high stress levels, and some PTSD [posttraumatic stress disorder],” Murray said. “There is this whole other dimension of patients’ mental health needs that is specific to what has happened after they got that cancer diagnosis that we tend to be more equipped to help them process and address those [needs].”
The center has continued to offer services virtually during the COVID-19 pandemic.
“Like other clinical and mental health providers, we were forced to rethink how to effectively deliver services that were needed, sometimes desperately,” Murray said. “We moved to virtual sessions quickly and found patient satisfaction and outcomes on the whole seemed to be at least that of in-person, although about half have since chosen to resume in-person [services] as restrictions have eased. Research now coming out seems to validate this was the case in other settings as well with mental health providers. As a result, I anticipate virtual psychotherapy on a significant level is here to stay.”
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