Introduction

Head and neck cancer (HNC) is defined as cancer of tissues or organs of the head and/or neck and includes mainly oral, oropharyngeal, laryngeal and oesophageal cancers [1]. The treatment employed is dependent on tumour site and stage and often involves a combination of surgery, chemotherapy and radiotherapy. There is evidence of improved survival following HNC and emphasis has been given to patient-reported outcomes (PRO) which reflect patients’ cancer experience [2–5]. More recently there has been emphasis on people living with and beyond cancer with a focus on personalised care planning and follow-up. Nevertheless, many sufferers experience high levels of unmet needs [6–8]. For HNC patients these unmet needs include psychological distress, financial concerns, appearance issues and intimacy issues, which patients and carers often find more difficult to discuss and assess [9, 10].

HNC-specific Health-Related Quality of Life (HRQOL) questionnaires, such as the University of Washington QOL questionnaire (UW-QOL), can be used for screening [11], but the focus is on the common items such as speech, swallowing, mood and anxiety. The development of assessment tools alongside health-related quality of life assessments in cancer patients is important because HRQOL questionnaires tend to lack the breadth of potential issues of concern and needs of patients during their cancer journey. Other assessment tools like the patient concerns inventory (PCI) can help focus the consultation towards patient needs and promote multidisciplinary care [12–16]. The purpose of the PCI is to allow patients to raise issues that they would like to discuss during their consultation. In the HNC setting, the PCI covers a range of issues including hearing, intimacy, fatigue, financial/benefits, PEG tube, relationships, regret, support for family and wound healing. It also lists multidisciplinary team (MDT) members (tumour board) for patients to see or be referred on to. The practicality of the PCI is enhanced by self-completion using a touch-screen computer (TST) immediately before the consultation [12], making it suitable for routine use in outpatient settings. The PCI is a tool for getting the best use of time from the consultation between patient and consultant with potential benefits to both as it aids doctor–patient communication by focusing on important issues for the patient. So far the development of the PCI has been focused on a one-consultant practice, where early oral cancer patients predominated. The aim of this paper was to report the use of the PCI across various HNC sub-sites (oral, oropharyngeal and laryngeal) and stages of disease (early and late), and to describe the main concerns that these patients want to discuss in their clinic appointments.

Methods

Patients treated for primary head and neck squamous cell carcinoma between 1998 and 2009 were identified from the University Hospital Aintree Head and Neck Cancer database. Patients with cutaneous and salivary gland malignancy, treated with palliative intent, current recurrence or ongoing disease, aged over 85 years of age, with cognitive impairment, living overseas or previously declining to participate in further studies were excluded. Mortality status was tracked via the office of national statistics (ONS). A questionnaire package was distributed in February 2011 with a reminder sent in April 2011. The package contained a covering letter about the survey, consent form, instructions on completing the questionnaires, a stamped addressed envelope, and the questionnaires—the University of Washington Quality of Life questionnaire (UW-QOL) and the PCI.

Questionnaire content

The UW-QOL questionnaire is well established [17, 18]. The UWQOL instrument has been included in this study to evaluate the clinically distinct groups in terms of differences in quality of life. For this study the UW-QOL v4 was analysed in terms of its two subscale composite scores, ‘physical function’ and ‘social-emotional function’ as well as a single six-point scale ‘overall’ QOL measure. Physical function is the simple average of the swallowing, chewing, speech, saliva, taste and appearance domain scores whilst social-emotional function is the simple average of the activity, recreation, pain, mood, anxiety and shoulder domains. In regard to the single item overall QOL scale patients were asked to consider not only physical and mental health, but also other factors, such as family, friends, spirituality or personal leisure activities important to their enjoyment of life.

On the PCI patients were asked, ‘If you were to attend a clinical consultation today which of the following 55 concerns would you wish to discuss with your head and neck cancer consultant/doctor?’ The Yes/No options were arranged alphabetically and were not grouped. Furthermore, patients could tick ‘Other’ and suggest concerns that were not listed. Next, patients were asked, ‘If you were to attend a clinical consultation today which of the following members of staff would you like to see or be referred on to?’ There were 14 types of health professional listed and patients could add ‘others’ not on the list.

Patients were also asked if they ever had radiotherapy as part of their HNC.

Statistical analysis

Results were analysed within clinical subgroups defined by tumour site (oral, oropharyngeal, laryngeal, other (unknown primary) and overall clinical stage (early-stage disease = 0–2, late-stage disease = 3–4) based on the clinical tumour, node, metastases (TNM) classification [19]. The Chi-squared test compared the clinical subgroups with regard to response rate and categorical patient characteristics at the time of survey. The Kruskal–Wallis test compared the clinical subgroups in regard to age, months from primary treatment, UW-QOL overall QOL, UW-QOL subscale scores, number of PCI concerns raised and number of staff members selected. Statistical analyses were performed using SPSS software version 19. Ethical approval for the survey was obtained from the Sefton Research Ethics Committee.

Results

The response to the survey overall was 58 % (447/775) with no notable variation in response (p = 0.29) between the seven clinical groups (range 51–64 % in response, Table 1). There was a significant difference (p = 0.004) in response by age group with a lower 45 % response from patients aged under 55 years and 57–64 % response in the three older age groups. There was no notable variation in response for other clinical/patient factors listed in Tables 1 and 2, with responses of 52–64 % across all the clinical subgroups. There were considerable differences in how patients in these groups were treated when they first presented, particularly in the increased use of radiotherapy for late-stage tumours and in the increased use of free-flap surgery for late stage oral tumours (Table 1).

Table 1 Response to the survey and responder clinical/treatment profile at time of primary treatment, by clinical group
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Table 2 Responder characteristics at the time of survey, by clinical group
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The clinical groups were similar in their times from first treatment when surveyed, but there were significant differences in regard to sex, age, whether patients had ever had radiotherapy as part of their head and neck cancer and in quality of life (Table 2). Oropharyngeal tumour patients were notably younger, whilst later-stage patients were much more likely to have had head and neck radiotherapy and also to report much worse levels of quality of life particularly in physical functioning. In regard to the median UWQOL composite scores presented in Table 2, it is relevant to note that in a previous study [20] of non-cancer persons routinely attending general dental practice we reported median (IQR) normative scores of 100 (95–100) for physical function and 90 (74–100) for social-emotional function. Using these as reference values then the deficits reported by patients in this study for physical function are of a far greater magnitude than deficits for social-emotional function. Overall, in response to the question about the PCI the ten most prevalent concerns that patients wanted to discuss in clinic were fear of the cancer coming back (39 %, 174), dental health/teeth (28 %, 123), chewing/eating (23 %, 102), swallowing (22 %, 100), fatigue/tiredness (22 %, 100), salivation (21 %, 95), pain in head and neck (19 %, 84), shoulder (18 %, 79), mucous production (17 %, 75) and speech/voice/being understood (16 %, 73); the full range is shown in Fig. 1. The ten most prevalent concerns of each clinical group are shown in Table 3. Fear of recurrence concerns were reported consistently by one-third or more patients (range 32–67 %) and were the dominant concerns of patients with early-stage tumours. For late-stage patients fear of recurrence was just one of many concerns of similar prevalence. Speech issues were more often raised by patients with laryngeal tumours than by other patients whilst issues relating to saliva were particularly common for patients with oropharyngeal tumours (32 % early, 48 % late). Apart from early-stage laryngeal tumours, patients consistently reported issues concerning dental health/teeth and chewing. The median (IQR) number of concerns raised overall was 4 (2–7) and there was significant variation (p < 0.001) between clinical groups ranging between 2 (1–6) for early-stage oral to 6 (2–10) for late-stage oropharyngeal and 7 (5–9) late-stage laryngeal.

Fig. 1
figure 1

Patient concerns inventory (PCI): percentage response to each concern when patients were asked ‘If you were to attend a clinical consultation today which of the following 55 concerns would you wish to discuss with your head and neck cancer consultant/doctor?’ (N = 447 patients)

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Table 3 The ten most common concerns raised by patients on the PCI within each of the seven clinical groups
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Overall, the members of staff that patients would like to see at clinic or be referred on to are summarised in Fig. 2, with the five most common per clinical group shown in Table 4. Wanting to see the surgeon was dominant (range 26–44 %) across all clinical groups apart from late-stage laryngeal patients. Surgeon, dentist or dental hygienist, clinical nurse specialist, speech and language therapist, dietician and radiotherapist/oncologist consistently occupied the top five selections made by these clinical groups. The median (IQR) number of staff members selected overall was 1 (0–2) with little difference between clinical groups.

Fig. 2
figure 2

Members of staff (PCI): percentage response to each member when patients were asked ‘If you were to attend a clinical consultation today which of the following members of staff would you like to see or be referred on to? (N = 447 patients)

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Table 4 The five members of staff that patients would want most to see or be referred on to, by clinical group
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Discussion

This cross-sectional study using the PCI and UW-QOL in HNC survivors identified a common issue they wished to have addressed in clinic, namely fear of recurrence (FoR). FoR is a common concern of patients that is not possible to identify based on clinical parameters [13] and it is an issue that does not come readily into discussion during the clinical consultation. Evidence [13] would suggest that FoR is unrelated to the stage of disease at presentation or to specific treatment. The PCI may thus be a valuable tool to allow patients to express this concern.

Other issues common to all sub groups apart from early laryngeal were in relation to dental health/teeth/chewing. These issues were expected and highlighted the importance of oral function and aesthetics for feeding as well as body image, self esteem and social interaction. The PCI identified concerns mainly related to function. Physical function impacts most profoundly in late-stage disease subgroups and these patients selected a greater number and wider range of items on the PCI. In patients with laryngeal site, speech issues were more common. Saliva is a significant issue in UW-QOL and was inconsistently reported on the PCI across site and stage. It was a key issue for one-third of patients with early oropharyngeal tumours and for one-half with late-stage oropharyngeal tumours. However, in spite of the myriad of issues that patients would like to raise in their consultation, there were relatively few referral requests specific to MDT (tumour board) persons. Previous work [15] concluded that the use of the PCI enabled patient issues to be adequately addressed in the clinic with little need for additional onward referrals to colleagues in the MDT (tumour board).

Patients with more advanced cancer suffer more cancer-induced tissue destruction and also require more radical treatment, which may inflict further damage. This implies that more advanced cancer results in a greater deficit in function and thus a greater list of healthcare needs, and this was reflected by these patients in this study raising more concerns on the PCI that they would want to discuss.

So far the PCI has been shown to be acceptable in routine patient care in HNC, integrating into routine out-patient review [14]. The average length of consultation is unaffected when compared with the standard traditional clinic even with the extra and diverse issues that are raised and that traditionally would not be discussed, for example, fear of recurrence or intimacy [15]. The introduction of the head and neck PCI has shown high levels of patient satisfaction and has promoted more holistic MDT support [14, 15].

It is recognised that there are some deficiencies in this study. The response to the survey overall was 58 % and although this is in line with surveys reported in the literature some caution is required in the interpretation of the findings. Also, it was a cross-sectional study and thus unable to provide an insight into changes over time especially since the patients were at different points of time within and beyond their own 5-year follow-up regime. Also patients were asked to raise issues as if they were coming to the clinic and hence the outcomes may not be representative of being asked whilst at clinic. However, the findings in this study are consistent with those found in previous work where the PCI was used by just one consultant with oral cancer patients [15].

The PCI is a tool that can be readily incorporated into the management of HNC patients and supports a holistic approach to clinic consultations. In a busy clinical environment it can quickly identify issues that patients want to talk about. Patients want to discuss a wide range of issues and if these go undetected and not discussed there could be an adverse effect on patient satisfaction and HRQOL. Completion of the PCI by patients before their consultation can highlight problems and concerns that doctors can target for discussion, thereby streamlining consultations, promoting multidisciplinary care and ensuring that patient needs are better met, thus creating a more effective service.