"No such thing as good cancer": a qualitative exploration of the experience of early-onset thyroid cancer in survivors.

BACKGROUND: The incidence of thyroid cancer has increased exponentially in recent decades. At the same time, there is a growing concern surrounding the overdiagnosis of indolent thyroid cancer, leading to invasive and potentially unnecessary interventions that can significantly impact young patients' lives. Yet, the experiences of survivors of thyroid cancer have been largely understudied. The purpose of this study was to explore the experiences of survivors of early-onset thyroid cancer. METHODS: The qualitative research design of hermeneutic phenomenology guided this study. Participants completed a demographic survey and semi-structured interview that was subsequently transcribed verbatim and analyzed using reflexive thematic analysis. RESULTS: Thirty-six survivors of thyroid cancer (83% female, median age at diagnosis: 37.1 years, median age at interview: 43.5 years) participated. Participants' experiences were characterized by two themes: (1) reconciling the meaning of the "c" word (cancer) as a dangerous and life-threatening diagnosis with lived experience of thyroid cancer and (2) thyroid cancer leaves patients with lifelong physical and emotional scars. CONCLUSIONS: Survivors of early-onset thyroid cancer experience significant short and late effects on their physical and psychosocial well-being. Survivors shared some of the difficulties of having to reconcile what they were told was a "good cancer" and their previously held beliefs of cancer, including feeling lost in the healthcare system and like they could not access services or be impacted because they had been told they had "good cancer." Increased communication of risks and acknowledgement of the perceptions surrounding cancer is needed to help patients make better informed decisions and feel supported throughout their thyroid cancer journey. Gaps in care pathways, especially adjustments post-treatment, should be filled to help support these survivors.

Health related quality of life in children with sickle cell disease: A systematic review and meta-analysis.

This review had three aims: 1) describe the measures used to assess health-related quality of life (HRQL) in pediatric patients diagnosed with sickle cell disease (SCD); 2) document the biopsychosocial factors related to HRQL in pediatric patients diagnosed with SCD; and 3) complete a meta-analysis comparing HRQL in pediatric patients diagnosed with SCD to healthy controls. Included studies were published in English, quantitatively assessed HRQL as a primary aim, in both SCD and controls, and included participants between 0 and 21 years of age. The final review included 66 articles, with a total of 8642 participants with SCD, 4 months-21 years of age, and 62,458 controls, 5-27 years of age. HRQL was predominately measured using the Pediatric Quality of Life Inventory Generic Core and Sickle Cell Disease Module. Meta-analyses revealed children with SCD had significantly worse HRQL compared to healthy controls (standardized mean difference = -0.93, 95% CI = -1.25, -0.61, p < 0.00001). Worse HRQL was associated with more severe SCD, female sex, and pain. The findings indicate that children with SCD are at risk for worse HRQL compared to their healthy peers and their HRQL may be impacted by several biopsychosocial factors. Future research is needed to examine how sociocultural factors uniquely impact this population and their overall quality of life.