What If Patients Don’t Stick To Cancer Treatment

Nonadherence with medication is a complex and multidimensional health care problem. The cause may be related to the patient, treatment, and/or health care provider. As a consequence, substantial number of patients do not benefit optimally from pharmacotherapy, resulting in increased morbidity and mortality as well as increased societal costs. There is not just one solution for the nonadherence problem that fits all patients. To improve adherence effectively, there is a need for a tailored approach based on the type and cause of nonadherence and the specific needs of the patient.

Adherence is defined as the extent of which patients are able to follow the recommendations for prescribed treatment. Patient may be nonadherent during different stages of treatment. They may also discontinue treatment prematurely. Patient’s reasons for deviating from the (agreed) treatment plan are diverse and may be intentional or unintentional. A meta-analysis of 569 studies of medication adherence revealed an average nonadherence rate of 25%.

Nonadherence could be intentional or unintentional. Intentional nonadherence can be considered as a process in which the patient actively does not follow treatment recommendations. The patient weighs the pros and cons of the treatment. Patient beliefs and the level of cognition are important factors in this process. Unintentional nonadherence may be the result of forgetfulness and not knowing exactly how to use medicines. It is a passive process that is specifically associated with the complexity of a medication regimen and the patient’s memory. Use of multiple medications (polypharmacy) is associated with increased risk of complex dosing scheme. Factors that may predict nonadherence include forgetfulness, illiteracy, inability to understand the purpose of treatment, not perceiving the treatment as necessary, a lack of trust in the treatment, and a lack of knowledge about the effect of treatment. In addition, psychiatric problems, including depression, cognitive limitations, missing visits, and a poor relationship with the health care provider have also been found to contribute to nonadherence.

Interventions directed towards uninternational nonadherence include simplification of dosing regimens, reminders, improved communication between patient and physician, and introduction or improvement of patient counseling. Adherence can be improved by using specific form of drug packaging. Reminding patients to take their medication by Short Message Services (SMS) is increasingly being used. Dialog between patient and provider is of utmost importance. Questioning the patient about habits of medication use is also recommended. The interventions are aimed at all patients regardless of whether adherent or not, and tailored to the specific needs of the patients.

Impact of Nonadherence to Cancer Therpay: Nonadherence to chemotherapy has been associated with worse outcomes in a number of disease states and with increased physician visits, higher hospitalization rates, longer hospital stay, disease worsening, and increased mortality. The most robust body of literature on adherence to cancer treatment involves adjuvant hormonal treatment (AHT) of early-stage, estrogen receptor-positive breast cancer. After surgical resection, with or without adjuvant chemotherapy, hormonal therapy for 5 years decreases the risk of death by about 30%. Adherence rates are alarmingly low, ranging from 50% to 73%. Age >70 years (vs <50 years) is consistently associated with an increased likelihood of treatment gaps.

An acute lymphoblastic leukemia (ALL), is a curable cancer. The nonadhence rates have been observed in small studies to range from 10% to over 50%. Retrospective analyses have found adherence rates with imatinib for CML or gastrointestinal stromal cell tumors to be about 80%.

Risk factors for Nonadherence: A number of barriers and risk factors have been associated with poor adherence. Adverse events of chemotherapy are the most obvious cause. Other barriers include forgetfulness, competing priorities, decisions to omit doses, lack of information, higher out-of-pocket costs, duration of treatment, a poor relationship with the healthcare provider, and emotional factors. Adherence is 1.5 times lower in patients from families in conflict. The elderly have exhibited lower adherence rates in some studies. Lack of direct communication about the importance of long-term orally administrated cancer therapy can result in nonadherence. Nonadherence is associated with worse outcomes.

The literature available from our country regarding noncompliance of patients of RT is sparse, with available data focusing on specific tumor types. Illiteracy and poor socioeconomic status are associated with poor compliance (TMH Study). Around one third of noncompliant patients are illiterate (33%), and almost half are unemployed (53.3%). Barely one tenth (9.6%) of noncompliant patients have health insurance. Comprehensive support (Socioeconomic, accommodation, logistic, nutrition, transfusion, education, etc.) along with prospective tracking of noncompliant patients has reduced the rates of noncompliance from >20% to <5% in the paediatric oncology department of TMH. Rigorous patient counselling while planning for RT is imperative in ensuring confidence in the efficacy of a treatment modality.

Some points that can be incorporated in adherence protocols, especially those with high patient throughput in hospitals are mentioned below:

1. Holistic approach toward treatment, which includes all aspects of care; oncologic, social, financial, personal, and mental.
2. Optimum counselling by the clinicians and support staff, social workers, dieticians, support groups.
3. Red flagging of patients at high risk for noncompliance (poor social support, financial issues, advanced-stage patient planned for multimodality treatment, etc).
4. Adherence to the RT time points.
5. Systematic review of patients on treatment for assessment of toxicities and review of socioeconomic factors that may lead to noncompliance.
6. Making patients aware of financial models to assure financial assistance (Ayushmaan Bharat).
7. One fifth of patients desire RT at native place. You may facilitate this provision.
8. Rehabilitation for post-treatment to improve self-sustenance.

Communication is crucial in establishing trust with patients, gathering information, addressing patients emotions, and assisting patients in decisions about care. The quality of communication in cancer care has been shown to affect patient satisfaction, decision making, patient distress and well-being, compliance, and even malpractice ligation. Even if patients have declined oncologic care, they may continue to see their primary care providers and family physician. Patients need to feel that they are not being permanently excluded from the health care system even if they make choices that are contrary to the recommendations of their medical team. Poor doctor-patient communication, the emotional impact of the cancer diagnosis, perceived severity of conventional treatment side effects, a high need for decision-making control, and strong beliefs in CAM are some of the reasons for not sticking to the conventional cancer treatment.

Although some patients decline all conventional treatment and use CAM as an alternative, others decline only some conventional treatments and complement the treatment they accept with CAM. Beliefs about conventional medicine (for example, “Western medicine treats the tumor, not the whole person”), CAM (for example, “holistic medicine treats the whole person”), and causes of cancer also play a very important role in the decision by the patients to decline treatment. Patients who perceive that their cancer specialist was threatening them with a “death sentence,” pressuring them into accepting treatment, or making disparaging comments about CAM are more likely to drop of the conventional cancer system.

“Problem patients,” are a unique group of self-directed, confident, and active patients who have thought deeply about the meaning of cancer and about their cancer treatment options. It may not always be easy for clinicians to deal with these patients as they deviate from the norm and challenge current evidence, but in the end, relationships with these patients can be rewarding and insightful. These patients spend much time researching their treatment options, they are window shoppers and googlers. The decision to decline treatment is not necessarily an indicator of distrust of the medical system and the care received to date, but can be a reflection of intensely personal factors. Accepting the challenge and recognizing and honouring the uniqueness of patients who decline conventional treatments will create opportunities for rich patient doctor relationships that will transform “problem” patients into partners in care.”

Dr. A.K. Dewan

Director – Surgical Oncology