Participants

In total 37 participants were included, with 25 who were recruited prospectively and 12 who were recruited retrospectively. The majority of participants were male, with a median age of 64 years (range 41–88) in the prospective group and 64 (range 59–79) in the retrospective group. All of the patients except one had previously been treated for primary disease with radiation +/- chemotherapy. One patient had been previously treated with surgery alone. Demographics for sample are summarised in Table 2. Due to sample attrition due to death, only 21/25 prospective participants were followed up at six months. The results of this study therefore only relate to the participants who survived at least six months following diagnosis of recurrence.

Table 2 Participant demographicsQuantitative FindingsSwallowing Outcomes

The MDADI scores range from 20 to 100 where 20 is the worst possible score. Scores of ≥ 80 are considered optimal, ≥ 60-<80 adequate,<60 poor. The baseline MDADI composite score for the sample was 60 (IQR: 52.15–81.75), at three months this deteriorated to 56.50 (IQR 49.75- 72.0) returning to 60 (IQR 54.75–75.75) at six months (Fig. 1).

Fig. 1

MD Anderson Dysphagia Inventory (MDADI) composite scores at baseline prior to treatment initiation, and three and six months following treatment initiation. Scores range from 20–100 where 20 is the worst possible score. Scores of ≥ 80 are considered optimal, ≥ 60-<80 adequate,<60 poor. At each timepoint the horizontal line represents the median, the box represents the interquartile range and the whiskers demonstrate the minimum and maximum values. Outliers are marked with a O

The PSS-HN NoD Scores range from 0 to 100 where 0 is the worst possible score (nil by mouth) and 100 is the highest possible score (normal diet with no restrictions). Impaired diet scores were noted using the PSS-HN NoD data at baseline with a deterioration across timepoints as summarised in Table 3. At baseline there were three participants who were unable to eat/drink prior to commencing treatment, this increased to six at three months and reduced to five at six months following treatment initiation. Increased diet modification was noted across treatment groups, with an increase in participants requiring pureed/non-chew diet from two at baseline to seven at six months.

Table 3 Performance status scale for head and neck cancer (PSS-HN) normalcy of diet (NoD) frequency and median scores at baseline, three months and six months

Gastrostomy tube usage was observed to increase for the entire sample at three months, remain stable at six months for the non-curative group but decrease for the curative group, as seen in Fig. 2.

Fig. 2

Gastrostomy tube usage at baseline, three and six months. The blue line represents the sample, and the grey and orange line represent the curative and non-curative treatment group participants

Quality of Life Outcomes

The median UWQoLv4 physical score was 68 (IQR: 58–88) at baseline, 64 (IQR 41–80) at three months, and 63 (IQR 46–78) at six months. A mild deterioration in physical composite score is noted between baseline and three months, and three months and six months as summarised in Fig. 3.

Fig. 3

University of Washington quality of life questionnaire v.4 physical composite scores at baseline before treatment initiation, and three and six months following treatment initiation

The median UWQoLv4 social-emotional score was 70 (IQR: 50–82) at baseline and remained stable at 70 (IQR 54.5–85) at three months and improved to 74 (IQR 58–85) at six months, as summarised in Fig. 4.

Fig. 4

University of Washington Quality of Life Questionnaire v.4 physical composite scores at baseline before treatment initiation, and three and six months following treatment initiation

Treatment Related Priorities

The CPS was completed by 24/25 participants at baseline and 20/21 at six months. One participant declined to fill out this questionnaire at both timepoints. Being cured of cancer, living as long as possible and being pain free were the top three priorities at baseline and six months both within and across treatment pathways.

Qualitative Findings

The qualitative findings have been detailed in a previous publication [18]. As described previously, the patient experience data which emerged from the interview data revealed three main themes. The first theme entitled ‘Here we go again’ refers to the participants’ experience of a recurrent diagnosis in the context of their previous experience of primary OPC. Participants set the scene with their description of their previous experience of primary OPC diagnosis, treatment and recovery after treatment. The second theme entitled ‘do I have a choice’ describes participants’ experiences of how they ended up on a particular treatment pathway, including access to second opinions and under involvement or otherwise in decision-making. The third and final theme ‘A personal choice’ relates to living with and beyond the diagnosis and treatment of disease recurrence and finding balance between survival, overall QoL and functional status in both the curative and non-curative treatment pathways. Participants contextualise their experience of recurrent disease in their past experience of primary disease diagnosis and treatment. Patients want to survive and when the options to choose between are cure or functional outcomes impacting on health related QoL, cure appears to be favoured. However, when cure is not an option, patients appear to want to survive as long as possible. Patients do experience a deterioration in function over time, however they do appear to be able to adapt and maintain QoL once their overall goal of cure or prolonged survival is being achieved. However, as the prognosis gets shorter there appears to be a shift in priorities where function/QoL take precedence over survival.

Integrated FindingsPatient Experience

When patients are diagnosed with disease recurrence, one of their greatest fears, the fear of recurrence, becomes a reality. These patients used their experience of HNC to frame how they responded to the recurrence at symptom presentation, diagnosis, treatment and through survivorship. The overarching findings of this mixed methods research are that although there may be a common treatment, common outcomes and common goal of cure/survival, each person experiences this differently. For each person, every effort must be made to enhance that individual’s experience of the care they are receiving. At the point of diagnosis and treatment decision making, and at every juncture in care thereafter, there must at least be the option for shared decision making.

Swallowing and QoL

Although we identified a discordance between patient-reported outcome measures and the clinician rated measures of swallowing in this study, our overall integrated findings identified that swallowing is impaired at baseline and is likely to deteriorate over time. Patients are aware of their impaired function at baseline and of the likely decline over time.

QoL is also often impaired prior to treatment initiation and is likely to change after treatment for rOPC. Aspects of quality of life are at risk of deterioration. However, some aspects of QoL may improve with treatment for rOPC. To find balance between the sacrifices made to achieve cure or prolonged survival and the deterioration in function and QoL, patients appear to be able to recalibrate what QoL is and means to them.

Treatment-related Priorities

Treatment-related priorities did not change in our sample and remained focused on cure or survival, with patients acknowledging lower success rates and the possibility of poorer function/QoL. If a less invasive option is available and will not compromise their overall survival, patients will choose this. Patients’ treatment-related priorities do not appear to change over time if their disease remains stable. Cure/survival remain key whatever the cost in terms of function/QoL. However there does appear to be some more consideration for QoL, if and when a patient’s circumstances change. This was seen in the non-curative setting over time at junctures between treatment options, or when curative treatment was not successful. It seems that when the prognostic outlook begins to shorten, more consideration is given to function and QoL.