Enhancing treatment decision-making: pilot study of a treatment decision aid in stage IV non-small cell lung cancer

Abstract

We developed a decision aid (DA) for patients with metastatic non-small cell lung cancer (NSCLC), to better inform patients of their prognosis and treatment options, and facilitate involvement in decision-making. In a pilot study, 20 patients with metastatic NSCLC attending outpatient clinics at a major cancer centre, who had already made a treatment decision, reviewed acceptability of the DA. The median age of the patients was 61 years (range 37 -77 years), 35% were male, 20% had a university education, and most (75%) had English as a first language. Most had received chemotherapy, with 65% currently on treatment. Patients were not anxious at baseline and had clear understanding of the goals and toxicity of chemotherapy in advanced NSCLC. After reviewing the DA, patients' anxiety decreased slightly (P ¼ 0.04) and knowledge scores improved by 25% (Po0.001). Most improvements in understanding were of prognosis with and without chemotherapy, although patients still believed advanced NSCLC to be curable. Patients rated the DA highly with respect to information clarity, usefulness and were positive about its use in practice, although 40% found the prognostic information slightly upsetting. The DA for advanced NSCLC is feasible, acceptable to patients and improves understanding of advanced NSCLC without increasing patient anxiety.

Is There a Role for Decision Aids in Advanced Breast Cancer?

“…21,29 They were also similar to those found for other pilot studies of DAs in advanced cancer from other countries. [9][10][11][12]30 The main conceptual frameworks of SDM and action science both emphasize the joint nature of significant medical decisions-that neither doctor not patients can make and implement these decisions alone. To accomplish this requires shared understanding of the situation, the goals, and the choices.…”

“…Other small trials of DAs in advanced cancer have all found very high rates of patient preference for participation in decisions. 9,10,12,30 There was a significant gap between patients' desired role and their actual role in decisions, with patients generally having less involvement in decisions than desired. The results were similar when restricting the analysis to only those patients who had made a decision during the study period (results not presented).…”

Longitudinal Perceptions of Prognosis and Goals of Therapy in Patients With Metastatic Non–Small-Cell Lung Cancer: Results of a Randomized Study of Early Palliative Care

“…[7][8][9] Patients with advanced cancer who have poor illness understanding and overestimate their prognosis are more likely to choose aggressive medical care at the end of life. 17 Moreover, in an investigation of 181 patients with advanced cancer receiving palliative therapies, one JOURNAL OF CLINICAL ONCOLOGY third of participants reported an aim of treatment to be cure, both at the time of study entry and 12 weeks later. [13][14][15][16] Even when presented with accurate information about their diagnoses, patients with advanced cancer frequently retain inaccurate perceptions of their illness.…”

Prognostic Understanding at Diagnosis and Associated Factors in Patients with Advanced Lung Cancer and Their Caregivers

“…However, past studies have consistently shown that many patients with advanced cancer have inaccurate prognostic understanding [4,[8][9][10][11][12]. Accurate prognostic understanding is difficult for patients even when accurate information is provided by their treating physicians [13][14][15]. To improve patients' illness understanding, clinicians need to be aware of factors that could hamper patients' accurate illness understanding.…”