Patient participation in treatment decisions for stage I non-small cell lung cancer (WC2011-010)


Starting date: 01/11/2010

Nowadays, patients want to be involved in health decision-making. A rising number of patients wish to play a more active role and the process of shared decision making (SDM) has become more and more popular in the last decade. SDM is a process whereby patients together with their physician discuss the best evidence of the risks and benefits of all the available options and arrive at mutually agreed-on choice. Frequently, patients are accompanied by family members and these relatives are often asked to participate in the decision-making. Increasing patient participation in treatment decision-making and taking into account their preferences in this regard has been shown to increase the quality of care as well as patients’ satisfaction and quality of life. There is a discrepancy, however, between patients’ preferences regarding their participation in the process of decision making and reality. It has been repeatedly shown that patients find it difficult to participate in this decision making process. Recent published studies, with regard to cancer care, imply that physicians often underestimate their patients’ preferences to be involved in medical decision-making. Besides, oncologists often do not involve patients in the decision-making process. Therefore, it is essential to clearly discuss with patients (and family members if involved) the role they prefer in the decision-making process.

Lung cancer is the leading cancer killer worldwide and the third leading cancer in terms of incidence in both women and men in the Netherlands. Lung cancer is sub-divided in non-small cell lung cancer (NSCLC) and small cell lung cancer. The first category accounts for about 90% of all lung cancers, and has a slower progression rate than the secondary category. Presently, surgical resection of stage I NSCLC offers a reasonable possibility for cure, with five years survival rates ranging from 50% to 77%. Currently, nearly 35% of patients undergo surgical resection for stage I NSCLC. However, older patients receive curative surgery less frequently because of co-morbidities, frailty, personal choice or a perceived lack of benefit of treatment. Besides, poor pulmonary function and risk for cardiac-related mortality can limit this treatment option. A new potentially curative approach, stereotactic body radiotherapy (SBRT) was recently introduced in stage I NSCLC. SBRT delivers very high, ablative doses of radiotherapy in short treatment times of a few fractions (often three to eight) and in an outpatient setting. Image-guidance techniques ensure that the prescribed radiation dose conforms better to the tumor than was possible using the conventional radiation therapy. Local tumor control rates with SBRT range between 85% and 95% at 3 to 5 years. Even in patients aged ≥ 75 years, treatment-related toxicity is low and no significant declines in quality of life are observed after treatment. In the Netherlands, introduction of SBRT in the IKA region was associated with an increase in median survival, from 16 months to 21 months, in patients with clinically staged I NSCLC aged ≥ 75 years. Important differences were also seen in 30-day mortality between surgery (7.4%) and SBRT (1.0%). No data from the RCT of surgery versus SBRT are available at present. A recent propensity analysis in patients’ clinically staged IA/B NSCLC revealed similar rates of local recurrence and disease-specific survival in patients treated with surgery compared with SBRT. A similar matched-pair analysis of the overall survival outcomes of patients living in the province north Holland who were treated for a stage I NSCLC between 2005 and 2007, revealed that SBRT produces the same survival outcomes for elderly patients diagnosed with early-stage lung cancer as surgery.

At present, patients can choose between two curative treatment options. Patients who are suspected of having lung cancer are referred to a hospital by the general practitioner for further examination. Here, the patient undergoes evaluation by a lung physician. Once a lung cancer diagnosis or highly suspected diagnosis of lung cancer is made, the physician discusses this with the patient. Patients are confronted with the choice between SBRT and curative surgery (if possible) and a decision has to be made.

In order to help patients make these decisions, often decision aids are used. Patient decision aids are tools designed to help patients (and family members if involved) participate in decision-making about health care options and provide information on the options and help patients clarify and communicate the personal value they associate with different features of the options. In a systematic review of 23 trials evaluating decision aids for patients making cancer decisions, the authors found that, in addition to improved knowledge, realigned expectations, and values clarification participation increased with 50% in patients exposed to a decision aid. Currently, there are patient decision aids available for patients with stage III: locally advanced non-small cell lung cancer and with stage IV: advanced non-small cell lung cancer. Also, software applications on the Internet are available. A version of Adjuvant! Online: decision making tools for health care professionals, has been produced to make estimates of NSCLC patient outcomes with and without adjuvant therapy. The purpose of this program is to help health professionals and patients with early cancer discuss the risks and benefits of getting additional therapy after surgery ( No patient decision aids are available for treatment decision-making (SBRT versus surgery) for stage I NSCLC. In order to design a decision aid for this decision problem, the decision-making process needs to be studied.