Identification of longitudinal patterns of positive psychological change in people following treatment for head and neck cancer

Introduction The experience of a traumatic or extremely stressful event may be sufficient to challenge a strongly held set of assumptions about the world and the self. In some people this may lead to the development of Post-Traumatic Stress Disorder (PTSD), or the increasingly recognised phenomenon of Positive Psychological Change (PPC) whereby a person’s reactions to the challenge are beneficial to one or more areas of their life. Little work has been undertaken investigating the development and longitudinal pattern of PPC in cancer patients, and none with people who have had Head and Neck Cancer (HNC). The aims of the study were two fold; 1) to identify demographic, clinical and psychological factors associated with PPC which occur in the acute period, defined as 3-12 months after treatment, 2) to investigate, with the same factors, how PPC changed over time. Method The study adopted a realist paradigm using a non-interventionist approach, utilising data collected longitudinally. A literature review supported a quantitative approach to understanding the pattern of change in this field. To minimise response burden whilst maximising data collection and granularity, a cross-sequential methodology was used. An annual postal survey was undertaken over a five-year period. Each year all potential participants were sent the Silver Lining Questionnaire (SLQ; a measure of PPC), the University of Washington (UoW) HNC quality of life (QoL) measure, and the Medical Outcomes Short-Form 12 (SF-12). Additional biographical and clinical data was collected for each individual from hospital databases. Linear mixed-effects modelling was undertaken to investigate the relationships between the data that might describe or account for, the longitudinal nature of PPC. Results Analysis indicated that the histological stage of the tumour and the treatment regime both have a relationship with the total score of the SLQ. The participants with lower stage tumours and those that only had surgical intervention reported more PPC. The multivariable model adjusting for psychosocial variables showed that the SLQ had a relationship with time since diagnosis, increasing initially after diagnosis and stabilising over time. The longitudinal data collected from the SLQ did not show any association when modelled with gender or family status, unlike previous research with women who had been treated for breast cancer. Greater levels of longitudinal PPC were reported by participants with high or low socio-economic status than those of middle socio-economic status, as measured by the Indices of Multiple Deprivation. Socio-economic status was not related to PPC in the first year following the completion of treatment. The longitudinal model of PPC with the SLQ as the dependent variable found a relationship with the categories of chewing, speech and taste from the UoW. A greater level of PPC being present was associated with fewer problems with these three factors of HNC QoL. No association was found with the SF-12 or any of its sub-scales. When the data collected between 3 and 12 months, was compared with data collected longitudinally, stage of tumour, treatment regime, socio-economic status, and general health were all significantly associated with higher SLQ scores. Discussion The current research builds on the minimal prior PPC research undertaken with people who have had a diagnosis of HNC. In particular it demonstrates a model of trajectories for the development of PPC over a longitudinal period of time. Historically there has been concern that the reported PPC is actually illusory or a coping strategy rather than a real change. It is suggested that the pattern of PPC development should include this use of coping and be considered to have three distinct stages; the traumatic stressors, the coping and adaptive strategies in an acute phase, and the reforming of the assumptive world and stabilisation of new cognitions and behaviours.