Original Article
Distress, concerns and unmet needs in survivors of head and neck cancer: a cross-sectional survey M. WELLS, BSC (HONS), MSC, PHD, RGN, PROFESSOR OF CANCER NURSING RESEARCH AND PRACTICE, NMAHP Research Unit, Scion House, University of Stirling, Stirling, M. CUNNINGHAM, BSC (HONS), MSC, PHD, CPSYCHOL, RESEARCH FELLOW, NMAHP Research Unit, Scion House, University of Stirling, Stirling, H. LANG, BA, PHD, (FORMERLY) RESEARCH FELLOW, School of Nursing and Midwifery, University of Dundee, Dundee, S. SWARTZMAN, BA, MSC, PHD, STUDENT, School of Psychology, University of Dundee, Dundee, J. PHILP, BN, CLINICAL NURSE SPECIALIST, Head and Neck Cancer Service, Queen Margaret Hospital, Dunfermline, L. TAYLOR, BN, HEAD AND NECK AND NEURO ONCOLOGY CLINICAL NURSE SPECIALIST/TEAM LEADER, ONCOLOGY SUPPORT TEAM, Ninewells Hospital, Dundee, UK, & J. THOMSON, MSC, RN, (FORMERLY) MACMILLAN CLINICAL NURSE SPECIALIST, Medicine & Surgery, King Abdulaziz Medical City, Jeddah, Saudi Arabia, and NHS Forth Valley, UK WELLS M., CUNNINGHAM M., LANG H., SWARTZMAN S., PHILP J., TAYLOR L. & THOMSON J. (2015) European Journal of Cancer Care 24, 748–760 Distress, concerns and unmet needs in survivors of head and neck cancer: a cross-sectional survey The aim of this study was to identify the distress, unmet needs and concerns of head and neck cancer (HNC) survivors in the first 5 years after treatment. Two hundred and eighty HNC survivors from three Scottish health boards responded to a cross-sectional postal survey in 2011. Questionnaires included the Distress Thermometer, Patient Concerns Inventory (PCI) and an adapted version of the PCI to measure unmet needs. One-third of the survivors had moderate or severe levels of distress, and 74% had at least one unmet need. The most common concerns and unmet needs included oral and eating problems, fear of recurrence and fatigue. Multivariate analysis revealed that being younger, out of work (not retired), ever having had a feeding tube fitted, having a greater number of comorbidities and living alone were associated with higher levels of distress, concerns and unmet needs. The diversity of concerns and unmet needs identified in this study highlights the importance of holistic needs assessment as part of follow-up care for HNC survivors with tailoring of support for particular concerns. Specific information resources and self-management strategies are required to help HNC survivors with the practical and functional consequences of HNC treatment.
Keywords: unmet needs, concerns, head and neck cancer, survivors, Patient Concerns Inventory, Distress Thermometer.
I N TR O DU C TI O N Head and neck cancer (HNC) is a group of cancers including cancer of the oral cavity, pharynx, larynx and orophar-
Correspondence address: Mary Wells, NMAHP Research Unit, Scion House, University of Stirling, Stirling FK9 4NF, UK (e-mail mary.
[email protected]).
Accepted 17 July 2015 DOI: 10.1111/ecc.12370 European Journal of Cancer Care, 2015, 24, 748–760
© 2015 John Wiley & Sons Ltd
ynx. HNC is the sixth most common cancer in the world, (Jemal et al. 2011). Annually, nearly 140 000 people are diagnosed with HNC in Europe (EUCAN 2012); and over 1300 people are diagnosed with HNC in Scotland (NHS Scotland 2012). A disproportionately larger number of patients with HNC are diagnosed per year in Scotland than would be expected given Scotland’s share of the UK population. Risk factors for developing HNC include smoking, alcohol consumption and poor oral hygiene (Dobrossy 2005). The incidence of, and mortality due to, HNC increases steadily in accordance with social
Distress, concerns and unmet needs in survivors of head and neck cancer
deprivation, with the most deprived patients having the greatest incidence and the poorest prognosis (NHS Scotland 2012). Incidence of HNC has increased in Scotland by 9.4% from 2002 to 2012 (NHS Scotland 2012). This is likely due to an increase in the rate of human papilloma virus-positive (HPV+) oropharyngeal cancers occurring in Europe over the last decade (Mehanna et al. 2013). In a recent analysis of international population-based cancer registry data, the highest increases in incidence rates of both oral and oropharyngeal cancer were in European countries (Simard et al. 2013). HPV+ HNC is epidemiologically and clinically distinct from HPV-negative HNC, being associated with sexual behaviour rather than smoking, alcohol or poor oral hygiene, and having a significantly better prognosis (Gillison et al. 2008; Evans et al. 2013; Fakhry et al. 2014). The increase in HPV-related HNCs along with better response of this type of cancer to treatment, suggests that the number of HNC survivors living for more than 5 years after treatment is likely to significantly increase over the next 10–20 years. Treatment of HNC can involve a combination of surgery, radiotherapy and chemotherapy. Acute toxicities include mucositis, dry mouth, dysphagia, oral fungal infection, dental problems, oral pain and weight loss. Following treatment for HNC, patients may have to come to terms with facial disfigurement, difficulties with speaking, chewing, swallowing and nutritional deficits. Many HNC patients receive a percutaneous endoscopic gastrostomy tube (PEG tube) to enable adequate nutritional intake, and these may remain in place for quite some time after treatment has ceased. Tulunay-Ugur et al. (2013) found that, of those patients who had been fitted with a PEG tube prior to chemoradiation treatment, 80% were PEG dependent 6 months after completion of treatment, and 40% were PEG dependent 1 year after treatment. Because of the potential long-term impact of treatment on patient function and quality of life, both the National Institute for Clinical Excellence (NICE 2004) and the National Cancer Institute, recommend that patients receive multidisciplinary support before, during and after treatment (National Institutes of Health 2014). The psychological impact of HNC is significant, and patients can experience high levels of depression and anxiety (Shiraz et al. 2014) before, during and after completion of treatment (Neilson et al. 2013). Several qualitative studies have shown that one of the most vulnerable periods in the HNC trajectory is the initial post-treatment period, when individuals have less support from the specialist multi-professional team, and feel isolated once they have left the supportive hospital environment (Wells 1998; Semple et al. 2008; Moore et al. 2014). © 2015 John Wiley & Sons Ltd
Little research has been conducted into the unmet needs of HNC cancer survivors. An influential study investigating the supportive care needs of survivors of other cancers suggests that the majority of people with unmet needs at the end of treatment continue to report unmet needs 6 months later (Armes et al. 2009). Research also suggests that unmet supportive care needs mediate the relationship between patient characteristics and quality of life (So et al. 2014). Only one study of unmet needs of HNC patients has been published, identifying unmet needs in 68% of patients, many of which were psychological, for example fear of recurrence, sadness, anxiety and depression (Henry et al. 2014). However, this and other research (Armes et al. 2009; Henry et al. 2014) has used the Supportive Care Needs Survey, a generic cancer survey with 34 items, many of which relate to choice and communication at the time of treatment (18/34). Survivors of HNC may have specific functional or physical unmet needs which are not identified in a survey of this type. Addressing the needs of cancer survivors is a top priority in the US and in an increasing number of European countries (Rowland et al. 2013). In the UK, research and development in this area has been championed by the National Cancer Survivorship Initiative in England, and similar initiatives in Scotland, Northern Ireland and Wales. Designing tailored services to support cancer survivors requires a detailed understanding of cancer-specific causes of unmet need, distress and concern, after treatment is finished and over the long-term. The primary aim of this study was to identify the quality of life, distress, unmet needs and concerns of HNC survivors in the first 5 years after treatment. A secondary aim was to identify clinical and socio-demographic factors associated with particular supportive care needs and concerns. This paper reports findings related to distress, unmet needs and concerns. METHODS Design and participants We conducted a cross-sectional postal survey. Participants were recruited from three participating health boards in Scotland – Tayside, Fife and Forth Valley. These health boards cover one cancer centre and two cancer units serving rural and urban populations. Clinical nurse specialists identified living patients on their databases who had been diagnosed with a HNC, were over 18, and who had completed treatment between 3 months and 5 years previously. Clinical nurse specialists excluded any patient receiving palliative care, or who had a prognosis of less than 6 months to live or who were believed by the clinical 749
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nurse specialist to be likely to find the survey upsetting. Non-English-speaking survivors were also excluded from this survey. A sample size of 200 was based on minimum requirements for a regression with up to 20 variables in the model, and using a rule of thumb estimated requirement of 10 cases per variable. Assuming a 50% response rate, a minimum of 400 potential participants were required for this study. In total, 488 surveys were sent to patients across the three health board regions.
Demographic information Questions about demographic, lifestyle and clinical factors were derived from the HNC quality of life literature. Demographic questions covered gender, age and whether or not the participant lived alone. Lifestyle questions concerned smoking behaviour, alcohol consumption, and details about current and past employment. Clinical information consisted of date of first diagnosis with cancer, date treatment ended, type of treatments, whether or not participants required a feeding tube (and if so for how long) and details of any self-reported comorbidities.
Procedure The clinical nurse specialist at each site identified eligible patients and assigned each a unique study number. Anonymised study packs, with only the study number as an identifier, were sent by post to potential participants. Study packs consisted of an information sheet, the survey booklet, pencil and highlighter for completing it, and a stamped, addressed return envelope. After an interval of 4 weeks, a reminder letter and a second copy of the study pack was sent out by clinical nurse specialists to potential participants who had not yet returned the questionnaire. The letter included in this pack specified a date by which data collection for the study was due to cease. Those who returned the survey were deemed to have consented to participate and were included in the study. Data collection took place over 8 months from May to December 2011. Clinical nurse specialists linked unique study numbers to corresponding unique 10 digit Community Health Index numbers to access clinical information about each participant. Anonymised clinical data were then provided from the Health Informatics Centre (HIC – http://www.dundee.ac.uk/HIC) for two of the health boards, and the clinical nurse specialist in the remaining health board provided the equivalent information. Clinical data provided included International Classification of Diagnosis (ICD10) codes for diagnosis, UICC stage, date of diagnosis and Scottish Index of Multiple Deprivation (SIMD) indices based on home postcode.
Measures The survey booklet comprised five sections: demographic information, the Distress Thermometer, the Patient Concerns Inventory (PCI) – Concerns, the PCI – Help and Support, and the Quality of Life of Adult Cancer Survivors (QLACS) questionnaire. This paper reports findings from the first four sections relating to distress, concerns and unmet needs; the findings from the QLACS are reported elsewhere (M. Wells et al.). 750
Distress thermometer Participants were asked to describe in general how much distress they had been experiencing in the week before completion of the survey. Participants were asked to mark their overall level of distress on an illustration of a thermometer with a scale from 0 – no distress to 10 – high distress; and to identify any relevant causes of distress by ticking items on a list. The list of possible causes of distress comprised five domains: Physical Problems (23 items, e.g. pain, eating or appetite, changes in how things taste); Spiritual/Religious Concerns (3 items, e.g. loss of meaning or purpose in life); Practical Problems (4 items, e.g. housing or finances); Family Problems (3 items, e.g. relationship with my partner); Emotional Problems (8 items, e.g. hopelessness, difficulty making plans). Participants were not asked to rank causes of their distress. The Distress Thermometer was originally developed by the National Comprehensive Cancer Network (NCCN), and adapted for UK patients by Brennan et al. (2012). The NCCN (2014) recommend that a distress thermometer score of 4 or more is evidence of moderate to severe distress. It has been widely used and its psychometric properties have been extensively studied (Vodermaier et al. 2009). The PCI – Concerns The PCI was developed as a clinical tool through interviews with HNC patients and by adding issues identified in other quality of life questionnaires. The clinical purpose of the PCI is to identify concerns that patients wish to discuss during their consultations with clinical staff at follow-up clinics (Rogers et al. 2009). The original inventory consists of 45 concerns presented in alphabetical order, not grouped into domains. We incorporated the PCI into this survey to identify patients’ concerns. For this, the following changes were made to the original inventory © 2015 John Wiley & Sons Ltd
Distress, concerns and unmet needs in survivors of head and neck cancer
– ‘Lifestyle – smoking and alcohol’ was split into two items, ‘smoking’ and ‘alcohol’; ‘Carer’ was split into two items, ‘caring for’ and ‘being cared for’; ‘PEG tube’ was adapted to ‘PEG tube/other feeding tube’; ‘Salivation’ was adapted to ‘saliva (too much/too thick)’; and ‘Taste’ was split into ‘taste changes’ and ‘taste loss’. The following five items were added to the inventory: ‘Bad breath’; ‘Dry mouth’; ‘Numbness/change in sensation’; ‘Travel/holidays’; and ‘Work/employment’. These changes were made to reduce ambiguity and based on clinical experience of the research team and feedback from clinical nurse specialists. Participants were asked to tick all of those issues about which they had had any concerns during the 4 weeks before completion of the survey. This timescale was chosen to be consistent with the timescale used in the QLACS questionnaire, which was also used in this study (data reported separately). Space was provided for participants to give details of any additional concerns at the end of the list of items. Participants were asked to highlight the three issues which had caused them the most concern. The PCI – Help and Support To investigate unmet needs as well as concerns, the PCI (Concerns) above was adapted to ask survivors to indicate the concerns for which they desired more help and support over the past 4 weeks. Again, participants were asked to highlight the three issues where they would most have liked help and support.
Data analysis Anonymised data were entered into IBM SPSS (IBM Corp. Released 2013. IBM SPSS Statistics for Windows, Version 22.0. Armonk, NY, USA). Differences between responders and non-responders were tested using chi-squared tests. Descriptive statistics were calculated for the sample demographics and for each of the questionnaires. Mean scores of distress, number of concerns, and number of issues requiring help and support were calculated for the sample, split by (1) demographic factors – gender, age, SIMD and living arrangements; (2) lifestyle factors – smoking status, alcohol status and employment status; (3) clinical factors – diagnosis (larynx, oropharynx, oral cavity or other), length of time since treatment, type of treatment and whether or not a feeding tube was fitted. Hierarchical multiple regressions were conducted to test the contribution of the demographic, lifestyle and clinical factors to predicting (1) level of distress, (2) number of concerns and (3) number of issues requiring help and support. Dummy © 2015 John Wiley & Sons Ltd
variables were created for diagnosis – oropharynx, oral cavity and other site, with the larynx dummy variable as the reference. Bivariate correlation was conducted to analyse the relationship between level of distress and number of items selected in the PCI – Concerns. The variance inflation factor (VIF) and tolerance were calculated for each variable in the multiple regressions – checks included that all VIF scores were well below 10, the average VIF score was close to 1 and all tolerances were above 0.2 indicating no multicollinearity problem in the data. Plots of standardised residuals against standardised predicted values were checked for random distribution, indicating that the assumptions of linearity and homoscedasticity have been met. Normal distribution of the residuals was checked by plotting histograms of the standardised residuals and normal probability plots. These plots indicated that the residuals were normally distributed.
Ethical considerations Ethics approval was granted by the NHS East of Scotland Research Ethics Service. Approval covered the survey, and included a provision for linking anonymised clinical data to survey responses.
RESULTS Of the 488 study packs sent to patients across the three health boards in Scotland, 319 were returned, a response rate of 65%. Of those responding, 39 participants had to be excluded as their diagnosis was more than 6 years ago. In total, responses from 280 participants were used in the analysis. There were no differences in gender, age or time since diagnosis between responders and non-responders. However, there was a significantly higher response rate from patients living in more affluent areas [53% response rate from the most deprived areas (SIMD 1) versus 83% response rate from the least deprived areas (SIMD 5); P < 0.0001]. The socio-demographic characteristics of the sample are described in Table 1. Participants were aged between 27 and 91 years, with a mean age of 64.5 years (SD = 11.4). The majority of the participants in the sample were men (73%), and 23% lived alone. Respondents were fairly evenly distributed across the five rankings of the SIMD. Only a minority (n = 50; 18%) reported that they were current smokers. Of these, 50% reported smoking 10 or more cigarettes/day. There was no effect of gender on smoking status. Of those who reported drinking alcohol in the last week (n = 173; 62%), nearly a third described 751
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Table 1. Socio-demographic characteristics of sample Patient characteristics Region Tayside Fife Forth Valley Age (years)
