Purpose

The aims of this study were to examine quality of life, using the Impact of Cancer version 2 (IOCv2), in British non-Hodgkin lymphoma (NHL) survivors and investigate differences between survivors in the UK and the USA.

Methods

NHL survivors (326 UK and 667 US) completed the 37-item IOCv2 and psychological distress, fatigue and social support questionnaires.

Results

The IOCv2 showed good reliability in the British sample with higher internal consistency (Cronbach alpha 0.7-0.9) and no floor and ceiling effects. UK survivors showed significantly higher negative (p < 0.001) and higher positive (p = 0.003) IOC compared to US survivors. Younger survivors (p = 0.003), those with shorter time since diagnosis (p < 0.001) and with lower levels of social support (p = 0.001), showed more negative IOC in both groups. Higher negative IOC was also significantly associated with fatigue (p < 0.001) and depressive symptoms (p < 0.001) in both countries. Higher positive IOC was associated with female gender (p < 0.001), longer time since diagnosis (p = 0.02), those diagnosed at later stage (p < 0.05) and with greater social support (p = 0.004). Whereas significantly lower positive IOC was associated with white ethnicity (p < 0.001), higher education levels (p < 0.05) and fatigue (p = 0.001).

Conclusions

The IOCv2 is reliable and applicable in UK and US populations. Both negative and positive IOC scores were higher in British compared to US survivors. However, in both countries, psychosocial factors consistently showed the greatest impact on QOL irrespective of clinical characteristics. Recognition and treatment of individuals with these risk factors is a high priority for improving QOL in long-term cancer survivors, as is the development of modular interventions aimed at increasing positive IOC as well as decreasing negative impact. The IOCv2 shows great potential both as a screening and assessment measure for examining cancer-related outcomes among survivors.

BACKGROUND: Mental health disorders in the context of long-term conditions in children and young people are currently overlooked and undertreated. Evidence-based psychological treatments for common childhood mental health disorders (anxiety, depression and disruptive behaviour disorders) have not been systematically evaluated in young people with epilepsy despite their high prevalence in this population. The aim of this multi-site randomised controlled trial is to determine the clinical and cost-effectiveness of adding a modular psychological intervention to usual care for the mental health disorders in comparison to assessment-enhanced usual care alone. METHODS: In total, 334 participants aged 3-18 years attending epilepsy services will be screened for mental health disorders with the Strengths and Difficulties Questionnaire (SDQ) and the diagnostic Development and Wellbeing Assessment (DAWBA). Those identified as having a mental health disorder and consenting to the trial will be randomised to either receive up to 22 sessions of the modular psychological intervention (MATCH-ADTC) delivered over the telephone over 6 months by non-mental health professionals in addition to usual care or to assessment-enhanced usual care alone. Outcomes will be measured at baseline, 6 months and 12 months post-randomisation. It is hypothesised that MATCH-ADTC plus usual care will be superior to assessment-enhanced usual care in improving emotional and behavioural symptoms. The primary outcome is the SDQ reported by parents at 6 months. Secondary outcomes include parent-reported mental health measures such as the Revised Childrens Anxiety and Depression Scale, quality of life measures such as the Paediatric Quality of Life Inventory and physical health measures such as the Hague Seizure Severity Scale. Outcome assessors will be blinded to group assignment. Qualitative process evaluations and a health economic evaluation will also be completed. DISCUSSION: This trial aims to determine whether a systematic and integrated approach to the identification and treatment of mental health disorders in children and young people with epilepsy is clinically and cost-effective. The findings will contribute to policies and practice with regard to addressing mental health needs in children and young people with other long-term conditions. TRIAL REGISTRATION: ISRCTN ISRCTN57823197 . Registered on 25 February 2019.