Abstract B24: Health related quality of life during cancer treatment: Perspectives of adolescent and young adult cancer patients and caregivers
Authors: Mishra Shiraz I. , Brakey Heidi Rishel , Kano Miria , Sussman Andrew 
Published: March 2017

BACKGROUND

Cancer incidence among adolescent and young adults (AYAs) ages 15-39 has steadily increased over the past 25 years. Moreover, 5-year survival rates for AYAs has not improved in almost 30 years. AYAs with cancer often require an intensive treatment regimen, comprising surgery, chemotherapy, radiotherapy, or a combination. Cancer and its active treatment result in adverse effects, including physical and emotional effects and risk for additional cancers. These have a detrimental impact on health related quality of life (HRQoL) of AYAs with cancer. With a dearth of data to translate into evidence-guided interventions promoting HRQoL, we characterized patients' and caregivers' perspectives regarding cancer and its treatments' impact on HRQoL and strategies to enhance HRQoL.

METHODS

We conducted qualitative, in-depth semi-structured interviews with AYAs with cancer receiving care at the University of New Mexico (UNM) Pediatrics Hematology/Oncology Clinic and the UNM Comprehensive Cancer Center and caregivers. New Mexico is one of the four “minority-majority” states, with a multiethnic, multicultural, and geographically dispersed population with striking patterns of cancer health disparities. We used community engaged research methods and a purposeful sampling approach, to recruit eligible participants from diverse racial/ethnic and socio-economic backgrounds. We conducted audio-recorded interviews (September through December 2015) focusing on patients' and caregivers' perspectives on the impact of cancer, stressors, coping mechanisms, meaning of life, and strategies to enhance HRQoL. Investigators iteratively reviewed transcripts to create an initial coding structure and transcripts were imported into NVivo 10, a qualitative data analysis program, for final coding. We used the social determinants of health framework to categorize and interpret the data.

RESULTS

We reached thematic saturation after interviewing 10 AYAs and 10 caregivers, among which there were eight patient-caregiver dyads. AYAs and caregivers expressed acute stress, frustration, anger, and sadness as a result of the cancer diagnosis. AYAs felt a loss of sense of self-worth and self-esteem. Moreover, AYAs and caregivers experienced financial difficulties due to loss of work, reduced work hours, and expenses related to medical care and accommodations; some had to make hard decisions by choosing between basic necessities and medical treatment. AYAs felt stigmatized due to their treatment-related physical appearance and limitation. On a positive note, there were references to inner strength and resolve and discovering the true nature of friendships. When undergoing treatment, a “good day” would be doing “normal” things, spending time with loved ones. There was also the realization that life with cancer meant “live life to the fullest” and “make a difference and help as many people”. Strategies to cope with cancer included maintaining a positive outlook, family support, being engaged, finding distractions, faith, and spirituality.

CONCLUSIONS

Cancer and its treatment poses a tremendous emotional and financial burden on both patients and caregivers, which they addressed through reframing the meaning of life and positive active coping strategies. Effective interventions to enhance HRQoL among AYAs with cancer and caregivers need to focus on behavioral and lifestyle support coupled with education.

Citation Format: Shiraz I. Mishra, Heidi Rishel Brakey, Miria Kano, Andrew Sussman. Health related quality of life during cancer treatment: Perspectives of adolescent and young adult cancer patients and caregivers. [abstract]. In: Proceedings of the Ninth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2016 Sep 25-28; Fort Lauderdale, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2017;26(2 Suppl):Abstract nr B24.