What Is the Patient’s Experience With HCC?

TON - March/April 2014 Vol 7 No 2

Patients with terminal hepatocellular carcinoma (HCC) may be a poorly understood group, according to the findings of quality-of-life research conducted by Lissi Hansen, PhD, RN, of Oregon Health and Science University in Portland, whose special interests are end-of-life issues and ethics.

At the 2014 Gastrointestinal Cancers Symposium, held January 16-18 in San Francisco, California, Hansen described to The Oncology Nurse-APN/PA what she learned from semi-structured conversations with HCC patients. “All patients want to tell their stories. They have a voice, and it wants to be heard,” she said.

Patients described the disease as very challenging, painful, and filled with uncertainty, and they reported feeling isolated and even shunned.

“The world views HCC differently from most other cancers. Liver cancer is often associated with drug or alcohol abuse, which creates a stigma, although that is no longer the case for a large percentage, who develop HCC as a result of hepatitis B or C they contracted decades ago,” she noted. Obesity also is now considered a risk factor.

Furthermore, the disease lacks a “spokesperson” (ie, a famous figure who proudly puts a public face on the condition). This heightens the feeling of HCC patients that they are somehow of less value than other cancer patients, she added.

HCC is the second-leading cause of cancer-related mortality, and the incidence is rising. Although liver transplant can help patients diagnosed at an early stage, for many patients HCC is incurable, with a duration of survival from diagnosis of only about 1 or 2 years.

“Considering the high death rate among people diagnosed with HCC, we know very little about their experiences living with the illness, symptoms, and treatment,” Hansen noted. “I think that to understand the illness experiences of these patients is essential for improving their care. There are very few qualitative studies in the medical literature that examine the patient’s perspective of HCC, and no longitudinal studies toward the end of life.”

Studying the Patient Experience
The pilot study led by Hansen sought to fill this gap in information and understanding. It followed a prospective, longitudinal descriptive design in which Hansen collected data once a month over a 6-month period from 14 adult patients (11 male, 3 female; mean age 61 years) nearing the end of life. She conducted semistructured interviews at 6 time points, collecting approximately 90 in total.

The interview, usually conducted in the patient’s home, included questions about living with HCC, pain and symptom management strategies, treatment decisions, and significant current concerns. The interview data were analyzed using qualitative description.

Four Themes Emerged
The findings clustered around 4 major themes. Woven throughout each theme were the patients’ experiences across time and their struggles with quality of life and lack of control over how HCC, and the treatment of HCC in particular, were impacting their lives.

Theme 1: Illness perceptions. Patient perceptions of HCC covered a broad spectrum, highlighted by a lack of information to prepare them for “the journey ahead,” feelings of isolation, and unrealistic hopes for liver transplant.

Theme 2: Uncertainty about treatments over time. Patients treated with sorafenib (half the group) reported uncertainty with treatment and its efficacy, struggled with symptom management, and questioned or regretted receiving, or not receiving, treatment.

Theme 3: Quality of life. Many patients saw quality of life as more important than quantity. Many believed that their quality of life was compromised by the side effects of chemotherapy, and they felt the need to choose between quality and quantity of life. Symptoms impacted daily life.

Theme 4: Coping strategies. Patients experienced a range of reactions to their diagnosis and developed their own means of coping, such as denial or finding strength through religion.

Elaborating on these themes, Hansen reported that patients wanted to start treatment as a means of controlling their lives, but often felt the treatment began to control them instead. They struggled with the value of treatment. As one patient said, “I told the oncology nurse, I’m really struggling whether to continue sorafenib or not. I’ve been praying to God to give me guidance in this decision.” Another commented, “I wish I never would have taken sorafenib. If I knew then what I know now….” The side effects of sorafenib—especially skin and gastrointestinal toxicity—were very upsetting to patients.

What can nurses do to better care for these patients? “We need to be able to provide information in a way in which we listen more; we hear more what our patients are saying about their quality of life, their values, their concerns; what’s important to them this week. We need a deeper understanding about what this disease means to them and their lives. We need to help them set their own goals and prioritize these goals. This will help patients and their families feel more in control.”

Reference
Hansen L, Vaccaro GM, Rosenkranz SJ, et al. Living with hepatocellular carcinoma from the patient perspective: a longitudinal study. J Clin Oncol. 2014;32(suppl 3). Abstract 373. Presented at: 2014 Gastrointestinal Cancers Symposium; January 16-18, 2014; San Francisco, California.

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