PROFILING PATIENTS WITH HIGH-RISK MYELODYSPLASTIC SYNDROMES WHO PREFER TO RECEIVE SURVIVAL PROGNOSTIC INFORMATION. FINAL RESULTS FROM A LARGE INTERNATIONAL PROSPECTIVE COHORT OBSERVATIONAL STUDY

Background:

Physicians often face challenges in prognostic discussions with their patients at the time of diagnosis. This might be critical in patients with high-risk myelodysplastic syndromes (MDS), given the often poor prognoses of these patients.

Aims:

The main objective was to investigate preferences for prognostic information on survival at the time of diagnosis and to identify clinical and socio-demographic factors associated with this preference. Also, we explored whether preference for information was associated with functional status and symptom burden so as reported by patients themselves.

Methods:

This was an international prospective cohort observational study. Newly diagnosed IPSS intermediate-2 and high risk patients were consecutively enrolled in 37 centers from nine countries in Europe, Asia and the USA. Patients were invited to participate during one of the first consultations, after confirmed diagnosis of MDS. Physicians completed a survey including a question on whether patients explicitly requested information on life expectancy (yes vs. no). Patients also completed the European Organization for Research and treatment of Cancer, Quality of Life Questionnaire-Core30 (EORTC QLQ-C30). The EORTC QLQ-C30 is a psychometrically robust quality of life (QoL) cancer measure assessing both symptoms and functional aspects. The following baseline socio-demographic and clinical variables were investigated for their association with desire for prognostic information: age, gender, education, living arrangements, ECOG performance status (0 vs. ≥1), IPSS risk category (int.2 vs. high-risk), comorbidity (0 vs. ≥1) and hemoglobin level. Univariate and multivariate logistic regression analyses were performed to investigate possible predictors for request of information, amongst socio-demographic and clinical variables (α=.05). Also, we explored possible associations between desire for information and EORTC QLQ-C30 scales by Chi-square and Wilcoxon-Mann-Whitney test as appropriate.

Results:

Overall, 280 patients (37% female and 63% male) were enrolled between November 2008 and August 2012. Mean age of patients was 70 years (range: 32-89). Seventy-four percent were diagnosed with IPSS intermediate-2 while 26% with high-risk IPSS. Sixty-one percent of patients explicitly requested information about expected survival to their physicians and 39% did not. In univariate logistic regression analysis, with request for prognostic information (yes vs. no) as dependent variable, a younger age (P=.002) and having no comorbidity (P<.001) were the only variables significantly associated with desire for prognostic information. These two factors were also confirmed in multivariate logistic regression analysis. Mean age of patients requesting information was 68 (range 32-88 years) while mean age of patients who did not requested information was 73 (range 47-88 years). When we explored desire for prognostic information by patients’ self reported functional status and symptom burden, we found that those who wished to receive information where generally doing better. This was mainly evident for fatigue (P=.007), physical functioning (P=.009) and role functioning (P<.001) so as measured by the EORTC QLQ-C30.

Summary / Conclusion:

This data might be of help to physicians in clinical practice by suggesting that younger patients and those who are generally in better health conditions are more likely to be interested in receiving prognostic information on survival.

Keywords: Myelodysplasia, Quality of life

Abstrakta v časopise Haematologica 2013, Suppl1

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