The aim of this study was to investigate the concurrent use of the Patient Concerns Inventory (PCI) and the University of Washington Quality of life instruments (UW-QOL), as a means of identifying mood and anxiety concerns in patients following head and neck cancer treatment. From August 2007 to July 2009, 204 patients (454 clinic appointments) attending one consultant’s oncology review clinic completed the UW-QOLv4 and PCI prior to their consultation. Before entering consultations, 17% (79/454) of patients reported problems with mood and 20% (89/454) reported problems with anxiety on the UW-QOL. Regarding the items raised by patients using the PCI prior to consultation, ‘mood’ was raised in 10% (46/454), ‘anxiety’ in 13% (58/454) and ‘depression’ in 10% (44/454) of cases. In 32% (145/454) of consultations, 44% (89/204) patients had reported significant anxiety or mood problems on the UW-QOL, or highlighted issues of anxiety, mood and/or depression on the PCI for discussion. Patients completing the PCI were more often referred to the clinical psychologist and to the emotional support worker. The results showed that the combination of the UW-QOL questionnaire and the PCI provide a practical means of screening for psychological distress in clinics.
There is a need for a holistic framework of support for patients with head and neck cancer. Patients who undergo treatment, which can be radical, are left with profound consequences to physical, psychological and social function. Whichever form of treatment is chosen, there are likely to be physical, psychological and social difficulties. As a wide range of issues are affected, it may be difficult to identify patients with concerns. This is made more problematic by the busy nature of out-patient clinics, where there are often considerable time pressures.
Identifying concerns has potential positive benefit, leading to better communication, improved satisfaction, better coping, quicker adaptation, improved health-related quality of life, and potentially less demand on health services. Anxiety and depression, are both present during the initial investigative, pre-diagnostic stages of cancer. Emotional distress is common. 1 year after treatment there is a gradual improvement in emotional functioning but many cancer patients continue to suffer from or develop distress and it is estimated that overall almost 30% suffer from distress.
It has long been recognized that depression in the clinical setting is under-diagnosed and under-referred. It has been estimated that 20–30% of cancer patients will experience clinically significant depressive symptoms at least once during the course of their illness. Rogers et al. suggested reasons for the under-diagnosis of depression. These included patients’ feelings of low-self esteem, reluctance to complain and fear of being a ‘burden’. The patients most at risk are unlikely to complain to the consultant about their feelings. Research suggested that the optimum time to identify depression is in the beginning to middle of the continuum; before the clinical stages of anxiety and depression take hold. Depression does not necessarily end when treatment ends. Studies of patients 6 months to 6 years postoperatively showed 22% were depressed as a result of their illness. In clinical practise, heightened distress often goes unrecognized by oncological care professionals, especially those working in the field of head and neck cancer.
A number of assessment tools are used by various health and social care professionals. These tools do not cover all the domains of a holistic assessment and there is a lack of co-ordination between health and social care to support the sharing of patient information. The patients concerns inventory (PCI) ( Fig. 1 ) helps focus the consultation onto patient needs and promotes multidisciplinary care; its purpose is to identify the concerns that patients would like to discuss during their consultation. It also lists MDT (Tumour Board) members that patients would like to see or be referred to. The PCI is different from the current health-related quality of life questionnaires. It is designed with a practical intent, to be used in clinical practise to screen patients for concerns, and then use that information directly to inform communication and patient care.
The UW-QOL version 4 has mood and anxiety domains and is a broad measure suitable for effective health-related quality of life evaluation in the routine clinical setting. By using both the PCI and the UW-QOL, these fundamentally different tools may complement each other in the clinical setting.
The primary aim of this study was to investigate the concurrent use of the PCI and the UW-QOL as a means of identifying mood and anxiety concerns in patients following head and neck cancer treatment. A secondary aim was to assess the ability of the PCI as a tool to help guide the clinician as to which patients might benefit from onward referral for psychological support.
Head and neck cancer patients from one consultant clinic, from 1 August 2007 to 15 July 2009, were included in this study. Patients on the Liverpool oncology database were included if disease free and under routine follow-up at least 6 weeks after completing treatment. Patients were excluded if they were pre-treatment, undergoing palliative care or if they were attending the dressing clinic for postoperative wound management. A standard touch screen computer was used to present the Touch-Screen Technology (TST) package to the patient. The program was written in Microsoft ACCESS to facilitate its application in a busy outpatient setting. Patients were approached in the waiting room by a hospital volunteer trained in administering the PCI and invited into a designated room in the outpatient area to complete the assessment. The PCI is embedded into clinical practise and it is very unusual for a patient to refuse to complete it prior to their consultation. Some patients require help from the volunteer, for example if they have forgotten their reading glasses, are physically unable or have problems with illiteracy. The TST package comprised the UW-QOLv4, followed by 54 PCI issues (45 from August 2007, 9 from April 2008) and a PCI list of 15 professionals to whom patients might wish to talk ( Fig. 1 ). The patient completed the TST in a separate room in the outpatient clinic. A family member or friend can accompany them and the volunteer will give assistance with the TST if required ( Fig. 1 ). TST data were placed directly on the hospital computer drive and through normal password protection arrangements were retrieved by the consultant in another room in clinic immediately before seeing the patient.
PCI issues relevant to mood and anxiety were ‘anxiety’, ‘mood’ and ‘depression’. Other PCI emotional issues comprised: ‘angry’, ‘fear of cancer coming back’, ‘memory’, ‘regret about treatment’, ‘relationships’, ‘temperament and personality’ and from April 2008 ‘coping’, ‘fear of adverse events’ and ‘self-esteem’. The UW-QOL is a standard head and neck cancer specific questionnaire with 12 domains, two of which are mood and anxiety. UW-QOL domains are scaled from 0 (worst) to 100 (best) according to the hierarchy of response.
Another question on the UW-QOL asks patients to choose up to three domains most important to them in the past week. The mood domain has five options: 0, ‘I am extremely depressed about my cancer’; 25, ‘I am somewhat depressed about my cancer’; 50, ‘I am neither in a good mood nor depressed about my cancer’; 75, ‘My mood is generally good and only occasionally affected by my cancer’; 100, ‘My mood is excellent and unaffected by my cancer’. The anxiety domain has four options: 0, ‘I am very anxious about my cancer’; 30, ‘I am anxious about my cancer’; 70 ‘I am a little anxious about my cancer’; 100, ‘I am not anxious about my cancer’. In earlier work the authors defined a ‘significant problem’ with anxiety as being a UW-QOL domain score of 0 or 30 and a ‘significant problem’ with mood as being a domain score of 0 or 30 or a score of 50 and mood having been an important issue in the past week. For simplicity of presentation, the authors will refer to patients as having ‘problems with anxiety or mood’.
New onward referral documentation was collected for PCI patients either through retrospective scrutiny of clinic letters to 24 September 2008 and later by prospective direct observation of the consultation (senior physiotherapist) until 8 April 2009. Non-cancer UW-QOL data from 372 patients attending 10 general dental practices were also analysed with regard to mood and anxiety. Clinical and demographic data (age, sex, diagnosis, tumour site and clinical staging, treatment details) came from the Liverpool oncology database. Since clinic appointment data is not independent of patient data, and since patients differed in the number of clinics they attended any P values computed in this paper were adjusted for possible patient clustering effects using binary regression modelling provided by the ‘binreg’ procedure within STATA software (STATA corporation, TX 77845, USA). Ethical approval for this study was given by the Hospital Clinical Audit Department set in the context of service evaluation.
From 1 August 2007 to 15 July 2009, 204 patients completed the touch-screen package of Liverpool PCI and UW-QOLv4 at 454 clinic appointments. The median (IQR) time taken to complete the TST-package was 8 (5–10) min. The mean (SD) age of patients using the touch-screen at clinic appointments was 62 (11) years and these clinics were a median (IQR) of 18 (8–47) months after diagnosis of head and neck cancer. Of 204 patients 57% (117) were male, 78% (160) had a diagnosis of squamous cell carcinoma, 68% (139) had oral cavity tumours, 77% (144/186) had clinical T1–T2 tumours, 19% (35/188) had clinical N positive tumours, 44% (90) had received head and neck radiotherapy at some time since diagnosis and 48% (98) had had free-flap surgery.
Before entering consultations, 17% (79/454) of patients reported problems with mood (i.e. scores of 0 or 25 or 50 and mood having been an important issue in the past week), and 20% (89/454) reported problems with anxiety (scores of 0 or 30) on the UW-QOL. One or other problem was reported for 26% (116/454). This contrasts with problem levels of 12% (44/372) for mood, 12% (46/372) for anxiety and 17% (62/372) for either, in non-cancer patients attending 10 general dental practices. Regarding the items raised by patients using the PCI prior to consultation, ‘mood’ was raised in 10% (46/454), ‘anxiety’ was raised in 13% (58/454) and ‘depression’ in 10% (44/454) of cases. One or more of mood, anxiety and depression were raised in 20% (92/454). In 32% (145/454) of consultations, 44% (89/204) of patients had reported significant anxiety or mood problems on the UW-QOL or highlighted issues of anxiety, mood and or depression on the PCI for discussion ( Table 1 ). For these 145 consultations, 116 attendees (68 patients) met the UW-QOL criteria for significant anxiety or mood problems whilst 29 attendees (27 patients) met only the PCI criteria (more minor concerns they wanted to discuss). Nearly half (46%, 53/116) of those with a significant anxiety/mood problem did not wish to discuss it. More significant problems of anxiety and/or mood were reported on the UW-QOL by younger patients ( Table 2 ).
|UW-QOL anxiety||UW-QOL mood||Stated on PCI that wished to discuss the issues of anxiety, mood and/or depression|
|(0) I am very anxious about my cancer||(0) I am extremely depressed about my cancer||2||5|
|(25) I am somewhat depressed about my cancer||4||6|
|(75) My mood is generally good and only occasionally affected by my cancer||2||–|
|(100) My mood is excellent and unaffected by my cancer||1||1|
|(30) I am anxious about my cancer||(0) I am extremely depressed about my cancer||–||1|
|(25) I am somewhat depressed about my cancer||9||23|
|(50) I am neither in a good mood nor depressed about my cancer||6||2|
|(75) My mood is generally good and only occasionally affected by my cancer||15||6|
|(100) My mood is excellent and unaffected by my cancer||2||4|
|(70) I am a little anxious about my cancer||(0) I am extremely depressed about my cancer||1||–|
|(25) I am somewhat depressed about my cancer||5||10|
|(50) I am neither in a good mood nor depressed about my cancer/and mood IMPORTANT a||2||1|
|(100) I am not anxious about my cancer||(25) I am somewhat depressed about my cancer||2||2|
|(50) I am neither in a good mood nor depressed about my cancer/and mood IMPORTANT a||2||2|
|(70) I am a little anxious about my cancer||(50) I am neither in a good mood nor depressed about my cancer/and mood NOT IMPORTANT a||18||1|
|(75) My mood is generally good and only occasionally affected by my cancer||95||20|
|(100) My mood is excellent and unaffected by my cancer||52||4|
|(100) I am not anxious about my cancer||(50) I am neither in a good mood nor depressed about my cancer/and mood NOT IMPORTANT a||10||2|
|(75) My mood is generally good and only occasionally affected by my cancer||31||2|
|(100) My mood is excellent and unaffected by my cancer||103||–|
|[A] Anxiety and/or mood problems on UWQOL||[B] No anxiety or mood problems on UWQOL but anxiety, mood and/or depression raised on PCI||[C] No problems on UWQOL and issues not raised on PCI||p value ** [A] vs [BC]|
|454 clinics||%||(116 clinics)||%||(29 clinics)||%||(309 clinics)|
|Age <55 years||117||32||(38)||8||(9)||60||(70)||0.02 a|
|Age 55–64 years||182||29||(53)||5||(9)||66||(120)|
|Age 65+ years||155||16||(25)||7||(11)||77||(119)|
|Squamous cell carcinoma (SCC)||381||28||(106)||6||(24)||66||(251)||0.07|
|Oral cavity tumour||323||25||(80)||7||(24)||68||(219)||0.28 oral vs pharyngeal|
|T stage b T1/T2||326||25||(81)||7||(22)||68||(223)||0.84|
|T stage b T3/T4||103||26||(27)||7||(7)||67||(69)|
|N stage b negative||362||23||(82)||7||(25)||70||(255)||0.07|
|N stage b positive||70||37||(26)||4||(3)||59||(41)|
|No head/neck radiotherapy since diagnosis||221||26||(58)||7||(15)||67||(148)||0.82|
|Yes, head/neck radiotherapy since diagnosis||233||25||(58)||6||(14)||69||(161)|
|No free-flap surgery since diagnosis||211||22||(46)||8||(17)||70||(148)||0.23|
|Yes, free-flap surgery since diagnosis||243||29||(70)||5||(12)||66||(161)|
|Within 12 months of diagnosis||168||24||(40)||10||(16)||67||(112)||0.37 a|
|Within 12–23 months of diagnosis||88||20||(18)||3||(3)||76||(67)|
|24 or more months since diagnosis||186||29||(54)||5||(10)||66||(122)|