Adolescent Perspectives of Treatment Decision-Making Challenges When Their Hematological Malignancy Relapses After Hematopoietic Stem Cell Transplant
Deborah Tomlinson, Sonia Lucchetta, Sarah Alexander, Sumit Gupta, Erilda Kapllani, Tal Schechter-Finkelstein, Jane Lowry, Joerg KruegerPurpose:
Children and adolescents who have a recurrence of hematologic malignancy after hematopoietic stem cell transplantation (HSCT) have a poor prognosis. Decision-making of pursuing further potentially curative treatment is complex. This study aimed to describe experiences of adolescents and young adults (AYA) regarding treatment choices when their disease relapsed after first HSCT and factors influencing decision-making.
Methods:
AYAs were considered eligible if they had been aged ≥12 years at time of relapse and after treatment with HSCT. We applied descriptive phenomenological study design using semistructured interviews. Participants, also, rated their quality of life (QoL) and current symptoms. Two researchers analyzed and coded transcribed interview data. Themes and sub-themes were identified. Ranking and scoring of importance of factors, using a visual analogue scale (VAS), that could influence decision-making were examined.
Results:
A total of 9 AYAs participated. Self-reported QoL measures ranged from 36 to 100. Symptom scores varied dependent on the graft versus host disease status of the respondent. We identified 4 themes 1. Emotional response; 2. Decision responsibilities; 3. Truce with or without peace; 4. Take the treatment. There were 4 subthemes. Stronger importance ranking was associated with chance of cure, hope, and doctor preference. Median importance scores for these 3 factors plus their own preference were rated as most important.
Conclusion:
Being offered curative treatment was very important to AYAs, with deference to parents and doctors to make final decisions. Diagnosis of chronic GvHD was impactful on QoL. Awareness of these experiences may aid in discussions for health care professionals, children and families.