Supportive Care Needs From Mid-to Long-Term Follow-Up Among Head and Neck Cancer Survivors: A Longitudinal Cohort Study

Abstract

BACKGROUND: There is limited knowledge on the supportive care needs (SCNs) of head and neck cancer (HNC) survivors during long-term survivorship. AIMS: To investigate SCNs from 2 to 5 years after treatment among HNC survivors, and its association with demographic, personal, clinical, physical, psychological, social and lifestyle, and cancer-related quality of life factors. METHODS: SCNs were measured at 2, 3, 4 and 5 years using the supportive care needs survey (SCNS-SF34 and SCNS-HNC) in 403 HNC survivors. Linear mixed model analyses were performed to investigate changes in SCNs (continuous outcome) over time and factors associated with SCNs (continuous). Also, the proportion of unmet moderate-high SCNs (dichotomous) was calculated. RESULTS: SCNs on the health system, information and patient support and lifestyle domain decreased from 2 to 5 years, whereas physical and daily living, psychological, sexuality and HNC-function needs were stable. At 5 years, 33% of HNC survivors had unmet SCNs, in particular lack of energy/tiredness (9.2%) and dry mouth/sticky mucus (8.1%). Demographic (male, higher education), personal (personality, coping, self-efficacy), clinical (advanced tumor stage, tumor recurrence), physical (low handgrip strength), psychological (anxiety, depression, fear of cancer recurrence (FCR)), lifestyle (smoking, drinking, being underweight) and cancer-related factors (lower levels of functioning, lower levels of nausea and vomiting, higher levels of fatigue, constipation, financial, speech, social eating, dry mouth and sexuality problems, and painkiller usage) were associated with SCNs. Specifically FCR and painkillers usage were very consistently associated with higher SCNs. CONCLUSIONS: SCNs of HNC survivors decrease over time. A third experiences SCNs at long-term follow-up.