Exploring Unmet Needs of Hematopoietic Cell Transplant Recipients

Hematopoietic Cell Transplant (HCT) patients are often medically and psychosocially complex requiring extended clinician visits that are frequently carried out by Advanced Practice Practitioners (APP’s). Recent HCT medical advances have reduced treatment mortality.  Knowledge of HCT survivor needs are necessary for both oncology and primary care APP’s to effectively collaborate to promote optimal care, especially given the projected physician shortages as well as APP training which focuses on health promotion and maintenance strategies.

Evidence-based guidelines for standards of care in HCT survivors were revised in 2012.  These guidelines augment the foundation for extending longevity. Our research sought to explore unmet adult survivorship needs in patients one year or greater post-HCT. We sought information to elucidate treatment centered survivorship characteristics associated with adherence to the evidence-based HCT guidelines and general health screening recommendations.  Lastly, we attempted to identify and compare features of unmet adult survivorship needs between allogeneic and autologous HCT survivors.

A cross-sectional pilot study utilizing the University of Waterloo’s Unmet Needs: A survey for people touched by cancer (SUN) was employed to examine the unmet needs of HCT survivors. SUN has a reported Cronbach’s alpha indicating strong psychometric properties. Statistical measures included descriptive statistics and analysis of variance with statistical significance set at p=0.05.

The overall survey response rate was 52%, with greater than 50% of male gender, 67% married, and >90% Caucasian. Additional demographic details will be presented in table format. Within the unmet information needs domain, greater than 55% of respondents noted a need for assistance in dealing with anxiety and worry between follow-up visits. 40% of respondents noted fatigue with most household tasks, even up to 5 years post- transplant. Relationship domain analysis revealed that greater than 40% of participants had difficulty in dealing with reactions to newly established priorities and goals based up their survivorship status. Survivors noted hardship dealing with the strains that cancer put on their relationship.  Greater than 66% of respondents over age 50 reported never having had a colonoscopy. Full dermatologic evaluation was lacking in 70% of post BMT patients. Similar issues existed regardless of type of transplant.