Table 6.

  1. Disease understanding: the patient should have a full understanding about the nature of MDS relevant to their particular case, including expected prognosis using validated tools, and the dynamic risk factors influencing disease progression.

 

  1. Treatment goals: the patient should be clear about goals of allo-HCT, which remains the only curative option. Alternative treatments should be discussed such as supportive care, HMAs, chemotherapy, and other available options such as clinical trials, highlighting potential benefits and limitations of each.

 

  1. Individual risk (patient-related risk factors): because most individuals with MDS are older, a comprehensive assessment should be performed to evaluate eligibility for allo-HCT. This should include assessment of overall health status, organ function, comorbidities, and functional status. Risks such as GVHD, infection, and organ toxicities should be fully discussed with the patient.

 

  1. Donor selection: the process of finding a suitable donor, which may be a matched sibling, matched or mismatched unrelated, mismatched related, or use of umbilical cord blood cells, should be explained to the patient including the importance of HLA matching and the need for adjustment of conditioning therapy and GVHD prophylaxis based on donor type.

 

  1. Allo-HCT procedure: the procedure should be fully explained in chronologic order including conditioning therapy choice for the particular case, GVHD prophylaxis, and the likelihood of immediate and late complications after allo-HCT.

 

  1. Expected outcomes: realistic expectations regarding the likelihood of achieving remission, long-term survival, potential early and late- complications, risk of disease relapse, and the availability of posttransplant supportive care/ maintenance strategies as appropriate, should be fully explained.

 

  1. Psychosocial considerations: the emotional and psychosocial impact of allo-HCT should be adequately explained including available coping strategies, support networks, and the potential impact of changes in QoL.

 

  1. Informed decision making: shared decision making should be facilitated by ensuring the patient understands all aspects of allo-HCT, including the risks, benefits, and alternatives. The patient should be provided with adequate time for questions and provide written materials or access to reliable and validated online resources.

 

  1. Follow-up care: the importance of long-term follow-up care to monitor for disease recurrence, manage late effects of transplantation, and support overall well-being should be strongly emphasized.

 

  1. Caregiver and family support: availability of a care system for the patient (family, friends, and social network).

 

  1. Disease understanding: the patient should have a full understanding about the nature of MDS relevant to their particular case, including expected prognosis using validated tools, and the dynamic risk factors influencing disease progression.

 

  1. Treatment goals: the patient should be clear about goals of allo-HCT, which remains the only curative option. Alternative treatments should be discussed such as supportive care, HMAs, chemotherapy, and other available options such as clinical trials, highlighting potential benefits and limitations of each.

 

  1. Individual risk (patient-related risk factors): because most individuals with MDS are older, a comprehensive assessment should be performed to evaluate eligibility for allo-HCT. This should include assessment of overall health status, organ function, comorbidities, and functional status. Risks such as GVHD, infection, and organ toxicities should be fully discussed with the patient.

 

  1. Donor selection: the process of finding a suitable donor, which may be a matched sibling, matched or mismatched unrelated, mismatched related, or use of umbilical cord blood cells, should be explained to the patient including the importance of HLA matching and the need for adjustment of conditioning therapy and GVHD prophylaxis based on donor type.

 

  1. Allo-HCT procedure: the procedure should be fully explained in chronologic order including conditioning therapy choice for the particular case, GVHD prophylaxis, and the likelihood of immediate and late complications after allo-HCT.

 

  1. Expected outcomes: realistic expectations regarding the likelihood of achieving remission, long-term survival, potential early and late- complications, risk of disease relapse, and the availability of posttransplant supportive care/ maintenance strategies as appropriate, should be fully explained.

 

  1. Psychosocial considerations: the emotional and psychosocial impact of allo-HCT should be adequately explained including available coping strategies, support networks, and the potential impact of changes in QoL.

 

  1. Informed decision making: shared decision making should be facilitated by ensuring the patient understands all aspects of allo-HCT, including the risks, benefits, and alternatives. The patient should be provided with adequate time for questions and provide written materials or access to reliable and validated online resources.

 

  1. Follow-up care: the importance of long-term follow-up care to monitor for disease recurrence, manage late effects of transplantation, and support overall well-being should be strongly emphasized.

 

  1. Caregiver and family support: availability of a care system for the patient (family, friends, and social network).

 
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