Introduction

Expanding treatment options for MDS have changed therapeutic decision-making for clinicians. To better characterize therapeutic choices in newly diagnosed MDS, we report the practice patterns captured during the first year of MDS diagnosis for patients enrolled in our statewide population-based study. We highlight a comparison of treatment in community and academic centers.

Methods

Adults in Minnesota with MDS (AIMMS) is a statewide prospective population-based study conducted by the University of Minnesota (UMN), Mayo Clinic, and Minnesota Department of Health. Starting in April 2010, all newly diagnosed adult cases (ages 20+) of MDS were invited to participate. After patient enrollment, central review was performed consisting of independent hematopathology and cytogenetic review coupled with oncologist chart review assigning prognostic risk scores [International Prognostic Scoring System (IPSS) and IPSS-R (Revised)] and abstracting treatment exposures. All enrolled patients with one year follow-up were included in this analysis. Treatment was divided into supportive, active, transplant, or other. Supportive care included observation, growth factors, and transfusions. Active care included azacitidine, decitabine, lenalidomide, or 7+3 chemotherapy. Academic centers were defined as the UMN and Mayo Clinic; all other centers were designated as community based practices.

Results

The median patient age was 73 years, with 68% males. IPSS and IPSS-R risk scores were calculated for 100% and 97% of patients, respectively.

Treatment choices stratified by IPSS risk group showed 89% low risk, 53% INT-1, 31% INT-2, and 13% high risk with supportive care; active and transplant strategies were utilized for 9% low risk, 44% INT-1, 64% INT-2, and 88% high risk. INT-1 in the community received 70% supportive treatment, in academic 35%. Active treatment for INT-1 was 30% in community and 45% in academic. Community INT-2 received supportive care in 45% of cases, in academic 23%. Transplants were limited to academic centers, with the highest rate in INT-2 at 34%.

Among community diagnoses, 100% of high risk, 52% INT-2, 26% INT-1, and 13% low risk were referred to an academic center. Comparison of age <65 and 65+ years showed 83% of transplants occurred in those <65. INT-2/high risk group patients <65 received 95% active therapy or transplant, compared to 51% of those 65+.

Discussion

This prospective, population based study provides a well-defined patient cohort based on central review of pathologic and clinical data. Evaluation of practice patterns during the first year after diagnosis showed higher utilization of active and transplant treatment strategies as IPSS risk score increased. Further, compared to community, higher utilization occurred for patients at academic centers, suggesting more aggressive treatment in these settings. Age was also a predictor of treatment choice. In addition, referral patterns followed IPSS score. Whether these treatment differences are driven by patient preference and/or translate into improved disease control and decreased mortality requires continued prospective analysis and will be detailed in future reports.

Table 1

Demographics

VariableNo.%
152  
Age, y   
Median 73  
Range 24-86  
<65 41 27 
65+ 111 73 
Sex   
Male 105 69 
Female 47 31 
   
De novo MDS 130 86 
Treatment-related MDS 22 14 
   
2008 WHO classification   
RCUD 
RARS 24 16 
RCMD 40 26 
RAEB-1 21 14 
RAEB-2 30 20 
MDS-U 
MDS with del(5q) 
   
Transfusion dependencea   
PRBC 60 40 
Platelet 24 16 
   
Treatmentb   
Observation 59 39 
Growth factor 23 15 
Azacitidine 24 16 
Decitabine 
Lenalidomide 10 
7+3 
Transplant 18 12 
Other 
   
IPSS   
Low 46 30 
INT-1 43 28 
INT-2 55 36 
High 
   
IPSS-R   
Very low 23 15 
Low 38 25 
Intermediate 25 17 
High 27 18 
Very high 34 22 
Not calculated 
VariableNo.%
152  
Age, y   
Median 73  
Range 24-86  
<65 41 27 
65+ 111 73 
Sex   
Male 105 69 
Female 47 31 
   
De novo MDS 130 86 
Treatment-related MDS 22 14 
   
2008 WHO classification   
RCUD 
RARS 24 16 
RCMD 40 26 
RAEB-1 21 14 
RAEB-2 30 20 
MDS-U 
MDS with del(5q) 
   
Transfusion dependencea   
PRBC 60 40 
Platelet 24 16 
   
Treatmentb   
Observation 59 39 
Growth factor 23 15 
Azacitidine 24 16 
Decitabine 
Lenalidomide 10 
7+3 
Transplant 18 12 
Other 
   
IPSS   
Low 46 30 
INT-1 43 28 
INT-2 55 36 
High 
   
IPSS-R   
Very low 23 15 
Low 38 25 
Intermediate 25 17 
High 27 18 
Very high 34 22 
Not calculated 
a

If received any PRBC or platelets

b

Patients placed in only one treatment category based on most aggressive therapy

Table 2

Treatment strategy by IPSS and location.

IPSS Risk Group
Treatment StrategyLowINT-1INT-2HighTotal
Community Based Care 
Supportive 31 (94%) 16 (70%) 9 (45%) 56 (74%) 
Active 1 (3%) 7 (30%) 10 (50%) 18 (24%) 
Transplant 
Other 1 (3%) 1 (5%) 2 (3%) 
Total 33 23 20 76 
 
Academic Based Carea 
Supportive 10 (77%) 7 (35%) 8 (23%) 1 (12.5%) 26 (34%) 
Active 2 (15%) 9 (45%) 13 (37%) 5 (62.5%) 29 (38%) 
Transplant 1 (8%) 3 (15%) 12 (34%) 2 (25%) 18 (24%) 
Other 1 (5%) 2 (6%) 3 (4%) 
Total 13 20 35 76 
IPSS Risk Group
Treatment StrategyLowINT-1INT-2HighTotal
Community Based Care 
Supportive 31 (94%) 16 (70%) 9 (45%) 56 (74%) 
Active 1 (3%) 7 (30%) 10 (50%) 18 (24%) 
Transplant 
Other 1 (3%) 1 (5%) 2 (3%) 
Total 33 23 20 76 
 
Academic Based Carea 
Supportive 10 (77%) 7 (35%) 8 (23%) 1 (12.5%) 26 (34%) 
Active 2 (15%) 9 (45%) 13 (37%) 5 (62.5%) 29 (38%) 
Transplant 1 (8%) 3 (15%) 12 (34%) 2 (25%) 18 (24%) 
Other 1 (5%) 2 (6%) 3 (4%) 
Total 13 20 35 76 
a

Diagnosis at an academic center and referral of community diagnosis

Disclosures

No relevant conflicts of interest to declare.

Author notes

*

Asterisk with author names denotes non-ASH members.

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