What are the information priorities for cancer patients involved in treatment decisions? An experienced surrogate study in Hodgkin's disease

Abstract

Summary A total of 165 adult patients with Hodgkin's disease (HD) were questioned following treatment to examine their perceptions of actual and desired involvement and provision of information in the treatment decision-making process. Irrespective of the degree to which patients felt they had been involved in the decision-making process and of the outcome of their particular treatment, patients who felt satisfied with the adequacy of information given were significantly more likely to feel happy with their level of participation in the overall process of decision-making (P<0.001). As part of a strategy investigating patient priorities, patients were asked to rank a series of possible acute and late treatment-related morbidities. Counterintuitively, the majority of long-term survivors felt early short-term side-effects were more, or equally, as important as late morbidity with respect to influencing choice of therapy. 165/230 (72%).Sixty-eight of the patients who replied were female and 97 were male. The median age of patients at the time of first treatment was 28 years (range 18-50 years) and the median interval from initial treatment to completing the questionnaire was 8 years (range 0-22 years).The first part of the first questionnaire dealt with patients' perceptions of the initial decision-making process, in particular the extent to which patients remembered feeling involved in decisions regarding their treatment, their satisfaction with this level of involvement and the provision of information about the disease and therapy options. The types of treatment experienced by that patient were recorded and if they had received both chemotherapy and radiotherapy, they were asked their overall impression of which treatment was most difficult.The second section aimed to identify disease and treatment morbidities (both early and late) that patients felt were the most important discriminants between different therapy options. Patients were asked to specify which of a list of symptoms or problems they had suffered during treatment and in the years after treatment. They were asked to rank all side-effects listed in order of importance with regard to the degree they would influence a future decision regarding cancer treatment. Patients were asked to rank all side-effects in this way whether they had experienced them or not.

The Impact of the Internet on Cancer Outcomes

“…83,84 Satisfaction with information has been shown to correlate with quality of life, 85 and patients who feel satisfied with the adequacy of information given are more likely to feel happy with their level of participation in the overall process of decision making. 76 Although more than 15 randomized trials have evaluated interventions to provide information to persons with cancer, 86 most focus on evaluating the effect of providing printed patient education pamphlets or computer-based personalized 87 information to patients. Relatively little is known about the effects of general undirected "chaotic" Internet information on persons with cancer.…”

Patient-reported outcomes in metastatic castration-resistant prostate cancer

“…11 Certain side effects may have far more relevance to the decision making process of men than is realised, for example what may be termed relatively minor symptoms by a clinician may in fact have a profound effect on certain individuals and strongly influence their treatment choices. 12 Men with mCRPC report significantly poorer quality of life (QoL) than other groups of men with prostate cancer with priority areas being fatigue, pain, and decreased physical activity. 13 From the patient's perspective, optimal treatment for advanced prostate cancer may be a function of the patient's willingness to make trade-offs between attributes such as efficacy and tolerability.…”

Gonadal Function and Fertility in Survivors After Hodgkin Lymphoma Treatment Within the German Hodgkin Study Group HD13 to HD15 Trials

“…Among these sequelae, infertility and hypogonadism are of particular importance for patients and survivors and demand specialized medical care. [4][5][6][7][8] Health care professionals need comprehensive information on treatment-related gonadal toxicity. At diagnosis, physicians should inform the patient thoroughly and consider protective methods to preserve fertility in time.…”