The Role of Social Health in Treating Cancer as a Chronic Condition
Published February 27, 2022 | 2 Minute Read
The search for information, connection and validation for people living with a cancer diagnosis does not end when a person reaches no evidence of disease. In fact, a 2021 Health Union survey revealed that 94% of respondents diagnosed with cancer (n=587) engage in social health – the dynamic, real-time action people take to find meaningful connections and share information that impact the health journey.
Subsequently, Health Union fielded a Beyond the Cancer Diagnosis survey completed by 1,241 people diagnosed with various types of cancer (breakdown below) to better understand aspects of their lives from treatment and HCP experience to ongoing impact.
These survey findings demonstrate the importance of recognizing cancer as a chronic condition and the critical role of ongoing social health support for people living with – and beyond – cancer.
Treatment and HCP Experience
While each person’s cancer diagnosis and treatment journey is unique, data from the Beyond the Cancer Diagnosis survey revealed that:
- At the time surveyed, 38% of respondents had been diagnosed for less than two years; 31% had been diagnosed from two to five years ago; 18% had been diagnosed from five to 10 years ago; and 13% had been diagnosed 10 or more years ago.
- 86% of patients noted they were managing other conditions in addition to their cancer.
- Surgery (62%), chemotherapy (52%) and radiation therapy (40%) were the most common treatments ever used.
- Nearly half of respondents (47%) noted their insurance covered their treatment, but ⅓ had to use their savings to cover their treatment.
- Only 42%* feel they received enough information from their HCP to make informed treatment decisions.
- 39% of respondents were not currently on treatment at the time surveyed.
When asked about experiences with side effects, 58%* of respondents noted their doctor always asks about any side effects they’re experiencing, while only ½* feel their HCP fully explained potential side effects to them.
In terms of where patients received treatment, 35% of respondents described their hospital/healthcare system as a specialty treatment center that focuses on treatment of specific conditions, 33% noted an academic medical center associated with a university or teaching hospital system and 24% reported a community or local hospital.
In addition, respondents were asked if they’ve ever received a referral from one oncologist to another, of which 25% noted they had received a referral and met with the new oncologist. Of those who received a referral to another oncologist, a variety of emotions were reported from satisfied (33%) to nervous (30%) to confident (24%).
No matter where patients are in their journey with cancer, we see continued participation in social health conversations throughout Health Union’s oncology-focused communities – whether diagnosed a few months or 20+ years ago:
Cancer as a Chronic Condition
Beyond diagnosis and treatment, cancer has an ongoing impact on quality of life. When asked about emotions experienced since diagnosis, 75% experienced anxiety, 66% said they missed their pre-diagnosis life, 66% experienced stress and 59% said they missed their former self. Note that at the time surveyed 39% of respondents were in remission (¼ had been so for less than six months), indicating that in some cases these emotions may remain even after treatment is complete.
Scanxiety is a unique feeling to people living with cancer that is often discussed in social health conversations throughout oncology-related communities. According to blood cancer patient leader Amber Lynch, this feeling doesn’t end at no evidence of disease: “Survivorship after remission feels like a battle won yet the blood tests and scans can feel like a dark cloud looming. There is this constant quiet fear and building anxiety as the next scan approaches.”
Another aspect of quality of life with ongoing impact that may often be overlooked in a healthcare setting is sex and intimacy; 40%* of survey respondents indicated their desire for intimacy has been negatively impacted by cancer. Patients were prompted to share how their cancer has impacted their sex and intimacy in a short answer format and responses varied across the spectrum, which further demonstrates the uniqueness of each person’s experience:
- Prostate cancer: impacted a lot, no longer get erection/ED, can no longer ejaculate, eliminate sex drive, on Lupron, have no sex life anymore (n=159).
- Bladder cancer: bad, destroyed it, painful due to shortening of vagina, didn’t have a sex life, no impact at all (n=85).
- Advanced breast cancer: completely gone, destroyed it, no libido, affects appearance/body image, symptoms prohibit it (pain, vaginal dryness, etc.), has not affected it (n=222).
- Lung cancer: not sexually active before diagnosis, n/a, widowed, negatively, not at all (n=80).
- Blood cancer: no impact, killed all intimacy (n=11).
- Other cancers: impacted a lot, ED, no effect, symptoms prevent it (pain), no libido/interest (n=177).
Within Health Union’s oncology-focused communities, patient leaders share their experiences with sex and intimacy to spark social health conversations and help others feel less alone. In his article “Let’s Talk About Sex,” bladder cancer patient leader Jim Van Horne shares his thoughts and encouragement on the matter, while lung cancer patient leader Donna Fernandez addresses the importance of discussing intimacy with your doctor in “S-E-X and Cancer.”
The Role of Social Health
The findings from Health Union’s Beyond the Cancer Diagnosis survey combined with our immersion in social health across seven oncology-specific communities demonstrates the ongoing impact of the disease, and the importance of recognizing and treating cancer as a chronic condition. Whether newly diagnosed, currently treating or in remission, people living with cancer are engaging in social health to connect in their shared experiences – and it’s important for pharma to be meeting patients where they are.
To learn how your brand can plug into the power of social health – from scalable online health communities and social extensions to comprehensive quantitative condition-specific data and more – visit our Business Solutions page.
*Top 2 box on a 7 point scale
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