Characteristics of Study Groups
The IO registry protocol database consisted of the electronic files of 924 oncology patients, of which 208 (22.51%) were receiving immunotherapy agents. The median age of this cohort was 60 years, the majority of which were female (152, 73%) and listed Hebrew as their primary language (139, 66.8%). There was a wide variety of primary cancer sites (breast, 99; gastro-intestinal, 37; lung, 23; gynecological, 18), with most having a diagnosis of advanced disease (121, 58.2%). The most frequently used immunotherapy were Cetuximab, Pembrolizumab, Nivolumab and Pertuzumab, for which 14 patients reported suffering from dermatological-related adverse effects.
Qualitative analysis of the HCP narratives identified 3 major thematic groupings: a biophysical perspective; a psycho-social-spiritual perspective; and implementation of integrated care.
Theme I: Bio-physical perspective
The first theme identified from the HCPs narratives addressed a comprehensive bio-physical perspective of immunotherapy-induced dermatological symptoms. The study dermatologist differentiated between localized (simple) and systemic (complicated) dermatological effects of the treatment, pointing out the danger of over-diagnosing these effects.
"I see many oncology patients with dermatological conditions which are not related to their oncology treatment. And even for those cases where the link between symptom and drug is clear, I am frequently reluctant to stop the oncology treatment, because of the implications for the patient's disease."
The dermatologist's approach was one of open discussion with the patient, starting prior to and continuing throughout the treatment period. This approach was also evident in the oncology nurse's narrative, which addressed preventive treatment strategies to decrease skin-related toxicities of the treatment. The supportive care physician, much like the dermatologist, first looked for other causes for the patient's skin condition, which are not necessarily related to the immunotherapy drugs:
First, you’ll think of anything that can be treated and reversible. You’d like to check if she’s taking any other herbs or supplements causing rashes…. And then you want to make sure that this rash doesn’t look like anything that could be related to the disease.
All of the participating HCPs addressed the need for a multi-disciplinary and inter-disciplinary approach, as well as the need to look beyond the skin condition "per se". The nurse addressed behavioral aspects; the supportive care physician suggested dietary changes and the use of pro-biotic products; and the integrative physician considered the use of acupuncture, as well herbal and Anthroposophic medicine to reduce dermatological symptoms and emotional distress.
Theme II: Psycho-social-spiritual perspective
The second theme identified from the HCP narratives presented a psycho-social-spiritual perspective, addressing the effect of the dermatological symptoms beyond their physical manifestation. The dermatologist approached this theme using a metaphor of "widening" the biophysical diagnosis' "borders" of the skin lesion, emphasizing the importance of effectively communicating with the patient on what they were experiencing and how they were coping.
"It's very important to be alert regarding the emotional impact on the patient...on her faith in her body. There is a tragedy here, and it requires the involvement of a social worker for emotional support. It's not something you can deal with on your own. The scariest thing is that they lose faith in their body, in themselves."
The emotional aspects of the symptoms, as well as the patient's relationship with their partner, were the focus of the nurse's narrative. The family doctor's narrative also addressed the psycho-social-spiritual perspective of patient care, viewing the effectiveness of treatment within the emotional response, especially with respect to how the patient's skin condition related to their role within the family and society, including sexual identity and role as caregiver:
"I ask the patient about whether the skin condition has an effect on her sexual role, her self-image. If she agrees, then I would ask her partner how he sees it; and how he thinks she feels about it…I would also talk with other family members. It really depends on the woman…she could be of a strong character, with many resources, and then it might be easier for her. But she could also suffer from depression, or a poor relationship with her partner…it affects everyone differently."
The integrative physician emphasized the importance of the relationship between dermatological symptoms related to the oncology treatment and depression, as well as general QoL:
"Metastases and skin-related symptoms can severely impair QoL, and may lead to an avoidant personality (doesn't want to leave home, doesn't meet with friends or family), and even depression. It's as if it constantly reminds them that they are a cancer patient."
In this narrative, the integrative physician also addressed the need for compassion, which may be difficult in light of the unpleasant appearance of and sometimes strong odor from the skin condition:
"Even if there is an off-putting feeling, talking about it makes it normal …It's not something to be embarrassed about. Ask her about how much it bothers her, how it bothers her relationship with her partner…"
The supportive care physician's narrative was reflective of her specialty in family medicine, with extensive training in integrative medicine. In her opinion, the psycho-social aspects of the dermatological symptoms were primarily a function of the patient's health-belief model:
It’s really trying to understand the person`s belief system. You need to find a way to engage them in a way that’s therapeutic. Sometimes you’ll meet somebody and he’ll show you his rash, but that’s two minutes of the consultation…and then for the other 58 minutes of the consultation I’ll take the person’s history and ask about their main concerns. The symptom that gets the patient through the door, opens the way to treat the whole person. If people are anxious or in distress, often the first thing would be a massage or a reflexology treatment. Engaging people, touching their skin very early on is helpful.
Theme III: Implementation of Integrated Care
While the need for inter-disciplinary communication was emphasized by all HCPs in their narratives, the question of who is responsible for the patient's care varied, as well as the need to ensure continuity of care. The dermatologist considered herself a counselor, with the oncologist as the case manager. The oncology nurse saw her role as that of a "case manager", the most readily available HCP responsible for the patient's QoL:
"This [the patient`s trust in the medical team] is the most important challenge facing nurses; from the first meeting with the patient…it is our responsibility not to "brush off" the patient…the way it is done is that there is one doctor, one nurse…to make it clear to the patient that they have come to the right place…that they are in good hands."
All narratives addressed the need for a multi-disciplinary model of care based on effective communication. The dermatologist recommended including a psychologist in the team, as well as nurses and therapists to treat mouth sores. The oncologist emphasized the role of the social worker and the oncology nurse. The family physician referred patients to the oncologist, to the dermatologist and to the integrative physician. The supportive care physician considered referring the patient to the psycho-oncologist, as well as to the team of IO practitioners for touch therapy, acupuncture, yoga, and mindfulness treatments. The collaboration within the multi-disciplinary team referred to both design and implementation of the patient-tailored treatment program:
“Once a week there`s a meeting of my integrative team for one hour, where we discuss 'difficult' patients…I present patients I have seen or that have changed their status, and we discuss them. I am the 'bridge' between my team and the oncology team, as well as the family physician and community clinic nurse”.
In contrast, the integrative physician pointed out barriers to the multi-disciplinary teamwork, specifically regarding patients with skin-related concerns:
"The oncology team does not refer enough of their patients suffering from skin conditions to our service. At the same time, we as an integrative medicine team are often not as aware of dermatological symptoms as we are of other conditions, such as chemotherapy-induced peripheral neuropathy…it's not sufficiently embedded in our lexicon…I do not ask my patients enough about skin-related symptoms…"
At the same time, she admitted that she doesn't usually address dermatological complications of immunotherapy drugs, or their on patient adherence to the oncology treatment regimen:
"Our primary objective is QoL improvement. We're not 'supposed' to treat the cancer itself, but rather focus more on improving QoL-related symptoms. However, If the patient is receiving immunotherapy…there needs to be an awareness about the side effects…skin-related symptoms need to be seen as a 'red flag', requiring special attention…".