DentalOncology
Cherith J Semple Simon A Killough
Quality of Life Issues in Head and Neck Cancer Abstract: Head and neck cancer (HNC) constitutes approximately 3% of all cancers in the UK, with in excess of 8500 new cases annually. Management of HNC depends on site, extent, histology, previous medical history and patient choice. A multidisciplinary approach is required to optimize patient wellbeing, owing to the significant functional and psychosocial implications that can impact on quality of life. Members of the dental team, to include the general dental practitioner, have a key role in patient care; therefore the dental team should be knowledgeable in the short-term and longer-term implications and how this impacts on quality of life. Clinical Relevance: This article offers the dental team with an overview of how HNC and the various treatments, such as surgery, radiotherapy and chemotherapy, impact upon quality of life, both in the short term and longer term. Dent Update 2014; 41: 346–353
Patients with HNC not only live with the potential of their illness being lifethreatening, but with the consequences of the disease or treatment itself, such as disfigurement, impaired speech and swallowing, as well as problems concerning finances, socializing and family worries. This affects patients’ quality of life (QOL) and impacts not only on them but also their families. QOL is difficult to define as it is a perceived subjective outcome. It is also a broad multi-dimensional concept which permeates many aspects of an individual’s life to include well-being, life satisfaction and spiritual beliefs. The World Health Organization defined QOL as
Cherith J Semple, PhD, BSc(Hons) Nursing, RN Macmillan Clinical Nurse Specialist − Head and Neck Cancer, South Eastern Health and Social Care Trust, Upper Newtownards Road, Belfast BT16 1RH and Simon A Killough, PhD, MFDS, FDS(Rest Dent), Consultant in Restorative Dentistry, Belfast Health and Social Care Trust, Grosvenor Road, Belfast BT12 6BP.
346 DentalUpdate
‘individuals’ perception of their position in life, in the context of their culture and value systems in their life in relation to their goals, expectations, standards and concern’.1 Length of survival is of paramount importance and remains the key primary endpoint of treatment, but measured alone it is an unsatisfactory measure of treatment success; therefore, functional status and quality of survival also needs to be assessed. This is especially apparent for patients with HNC because social interactions and emotional expression depends, to a great extent, on the functional and structural integrity of the head and neck region. Furthermore, there can be considerable individual variation on the priority a patient places on cure and level of post-treatment dysfunction that is deemed acceptable. What is technically possible might not be acceptable to some patients, thus it is key to have a good insight into the patient’s goals and value system. QOL differs between individuals at similar stages of disease, with some reporting unacceptably poor QOL, which may be equated to general coping styles and personality.2 Health-related QOL (HRQOL) is considered to be a specific subset of QOL,
assessing treatment-related symptoms, psychological aspects, social interaction and physical function.3 It is not the same as toxicity. In the past two decades, a number of validated questionnaires have been developed, which has proved helpful in the assessment of HRQOL. Examples of such questionnaires include the University of Washington Quality of Life Questionnaire (UWQOLv4) and the European Organization for Research and Treatment for Cancer (EORTC QLQ H+N 35) and FACT H+N. These questionnaires have provided clinicians with a better insight into factors that predict HRQOL and can be an effective way of helping patients to identify and prioritize preferred outcomes or treatment goals. Measuring HRQOL can also help monitor response to treatment.
Significance of QOL in HNC With ongoing developments in cancer diagnostics and treatments, the overall survival rate for HNC has improved marginally, but mainly for those from higher socio-economic backgrounds.4 Although patients are living longer, some continue to experience disease and treatment-related May 2014
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DentalOncology
long-term sequelae. The main predictors for poorer QOL in this patient group are combined rather than single modality treatment and advanced stage of disease.5 Furthermore, patients are at risk of late effects of treatment that persist years beyond the end of treatment, which may include xerostomia, swallowing problems and osteoradionecrosis (ORN) and are important determinants of long-term QOL. Patients with HNC are more likely to have smoking histories and be problemdrinkers and a combination of psychosocial difficulties with maladaptive coping strategies can lead to decreased levels of overall QOL for HNC survivors, treatment compliance and survival. Discovering and understanding the important challenges that impact on QOL for patients with HNC is necessary to help direct clinical practice and enable appropriate support and improved adjustment after treatment. Nevertheless, it is important to note that different aspects of functional, psychological or social challenges should not be compartmentalized but viewed as interrelated and often compound to lifestyle alterations. Furthermore, despite the burden of symptoms and functional difficulties that some individuals experience, this does not necessarily translate into poorer QOL for all patients, which in part can be explained by their cancer diagnosis granting them permission and an opportunity to reprioritize and restructure important values and goals.
QOL over time In general, patients undergoing treatment for HNC will experience a decrease in QOL during and after treatment, irrespective of cancer stage or treatment type.5 This is especially apparent between diagnosis and 3 months after the start of treatment.6 This is followed by a slow improvement over time approximating baseline levels (pre-treatment) by 12 months post-treatment.7 Despite general QOL nearing the baseline by 12-months following treatment, patients often report specific symptoms, functional problems related to HNC and its treatment and psychosocial concerns including fear of recurrence during follow-up (Table 1). Healthcare professionals should not ignore May 2014
emotional distress, symptoms or functional problems as these may have a profound impact on physiologic or psychological well-being. For example, dysphagia may impact on nutritional intake, thus contributing to fatigue and poorer QOL.
Factors impacting on QOL A number of physical, social and psychological factors can impact on QOL (Table 1) and an overview of the main aspects will be summarized below.
Changes in appearance
Disfigurement is most common after surgery, especially if tumour resection includes removal of bone or involvement of the facial nerve (Figure 1). While postoperative swelling subsides within a few weeks of surgery, oedema as a result of disruption to lymphatic drainage may take a number of months to subside. Radiation and concurrent chemotherapy can precipitate tissue swelling, inflammation, pain and skin reactions that can also persist well after the completion of treatment. Facial disfigurement can profoundly affect self-concept, social interaction and emotional wellbeing and can translate into an array of psychosocial difficulties to include: Anxiety; Worsening relationships with partner; Social isolation;8 and Depression.9 When considering how an individual copes with his/her disfigurement the most influential factor is not the degree of disfigurement resulting from the disease or treatment but the importance and meaning that the patient attributes to his/her appearance.10 Adjustment to disfigurement is variable and, whilst many patients adjust well, others experience high levels of distress. Those at greatest risk appear to be female and those with poor social support.8 Patients look to the reaction of family and friends to gauge the extent of their disfigurement and those with good social networks are more likely to receive positive reinforcement and opportunities to engage socially.11 One of the most difficult aspects that patients with HNC must deal with is unwanted intrusions, such as staring and comments.12
Appearance Dental Status Eating and Swallowing (PEG Feeding) Employment Issues Fatigue Osteoradionecrosis Psychosocial Distress Sexuality Shoulder Dysfunction Speech and Voice Trismus Xerostomia Table 1. Factors that impact on QOL for patients with HNC.
Figure 1. Facial disfigurement following surgery and chemoradiotherapy for recurrent squamous cell carcinoma floor of mouth with metastatic neck disease.
When considering altered appearance, an important facet is preoperative expectations, as inaccurate perceptions of post-operative appearance has been significantly related to overall distress and poorer abilities to cope.13 Patients with disfigurement who are experiencing psychosocial difficulties should be offered interventions to help them cope more effectively. This can range from encouraging the patient to engage early with self-care to grooming following surgery, early graded exposure and reintegration to social situations, referral to a camouflage therapist, social skills training, or referral to a clinical psychologist for individuals who are experiencing significant psychosocial distress. Changes in eating and swallowing
Difficulties with chewing and swallowing are commonly reported after DentalUpdate 347
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DentalOncology
treatment, but degree of severity often depends on the extent and type of treatment (Table 2). Other oral symptoms may include xerostomia, hypersalivation, trismus and altered taste, which can also impact on QOL (Figure 2). At the most fundamental level these alterations to oral function often interfere with the kinds of food and fluids that can be swallowed. A significant number of patients require altered diet textures, but patients with advanced HNC who experience dysphagia may require gastrostomy tube-feeding to maintain their nutritional needs. Also, numerous patients report that eating requires additional time, which reduces the pleasure of eating.14 Oral incontinence often leads to avoidance of eating in public owing to embarrassment and patients experience altered social interactions and feelings of isolation.15,16 The presence of a long-term gastrostomy feeding tube is a very strong predictor of poorer QOL,17 having a greater influence on post-treatment QOL than persistence of disease.18 Eating and swallowing difficulties can be long-term, especially if there is loss of anatomical structures during surgery and/or fibrosis from radiotherapy, reducing the range of tongue and jaw movements, diminishing pharyngeal wall or laryngeal movement, and thus increasing the risk of aspiration. Furthermore, combined chemoradiotherapy is frequently used for patients with advanced HNC to improve locoregional control, organ preservation and/or survival outcomes. The addition of concurrent chemotherapy to radiation therapy increases the severity and intensity of severe early mucosal and pharyngeal toxicity, but also late toxicity. Some patients have persistent longerterm effects such as laryngeal oedema, causing dysphagia and aspiration, thus they are unable to manage an oral diet which negatively impacts on QOL.19,20 It is important that patients are referred to the dietitian and speech and language therapist to assess, monitor and provide support and teach skills and strategies for patients and their families to regain a sense of control on how best to manage their nutritional intake. Radiation-induced xerostomia is the most commonly reported late side-
348 DentalUpdate
effect of radiotherapy to the HN region and adversely affects QOL. Lack of saliva affects speech and swallowing and can also accelerate dental caries. Compared with conventional radiotherapy, intensitymodulated radiotherapy (IMRT) can reduce irradiation of the parotid glands, which significantly reduces the incidence of xerostomia and leads to recovery of saliva secretion and improvements in associated QOL21 (Table 2).
a
b
Changes in speech and voice
Change in speech is most commonly associated with surgical intervention to the oral cavity or larynx (laryngectomy). Voice changes can also result from the short-term effects of oedema to the longer-term effects of fibrosis, mainly associated with radiotherapy. Speech consistently emerges as a key functional issue of concern for patients.22 The psychological consequences of altered speech and voice can be profound and, prior to embarking on a specific treatment plan, it is imperative that patients are well informed about long-term changes alongside potential techniques that aid voice rehabilitation. Shoulder dysfunction
Significantly worse QOL scores have been reported in patients who received neck dissection compared to those without.23 Shoulder dysfunction is especially prevalent after a radical neck dissection, where the accessory nerve is severed as part of the procedure, leading to denervation of the trapezius muscle. The trapezius muscle is responsible for the upward rotation of the shoulder during abduction and flexion and is the major stabilizer for the scapula. The loss of muscle enervation leads to motor dysfunction and shoulder misalignment and without exercise the range of shoulder movements becomes limited and painful. With the recognition that radical neck dissections lead to significant morbidity, surgical procedures have been modified. Consequently, patients with their spinal accessory nerve and sternocleidomastoid muscle preserved appear to have fewer difficulties with work-related, leisure-related and daily
Figure 2. A 63-year-old male one year following a course of chemoradiotherapy for tonsillar carcinoma demonstrating: (a) dental caries; and (b) trismus, having a negative impact on quality of life.
Mucositis Xerostomia Taste Disturbances Infections Trismus Psychological Issues Table 2. Effects of non-surgical management of HNC.
activities such as dressing.24 Nevertheless, it should be noted that any type of neck dissection produces fibrosis in the neck, which may lead to a feeling of stiffness or constriction with overall loss of function and pain.25 Pain
There is a limited number of studies that have solely examined pain with this patient population. Of the available studies, pain is often reported as a symptom correlated with recurrence.26 For a significant number of other patients, pain can be an ongoing symptom well after curative treatment, with Chaplin and Morton27 reporting that approximately one-quarter May 2014
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of patients experience pain at 12 and 24 months post-treatment. Of particular interest, there would appear to be an association between high levels of pain and depression with reports of poorer QOL;23,28,29 therefore, this would highlight the need for regular assessment and improved pain management during and after treatment for HNC. Analgesia in these patients often includes opioid analgesics which may mask pulpitic symptoms from a carious dentition and thereby delay management. Fatigue
A diagnosis of HNC and its associated treatment is often correlated with fatigue. Fatigue is especially amplified with multimodality treatment and interferes with QOL.30 Fatigue is frequently accompanied with other symptoms, such as insomnia and mood disturbance. Specific mechanisms for persistent fatigue are currently receiving more attention as patients are living longer as survivors of HNC. It has been proposed that fatigue is the result of the production of proteins by active growing cancer cells. Causes such as anaemia, hypothyroidism, sleep disturbance, depression and inadequate nutritional intake should be considered, as attempts to address fatigue successfully can enhance QOL. Therapeutic strategies for the treatment of fatigue in HNC have not been well-defined but physical exercise, psychotherapy and relaxation have been successful interventions for general cancer cohorts.31 Employment issues
Complex treatment regimes are often required for the management of HNC and can interfere with daily work patterns, not only for patients but their families, and can pose a major financial burden. Furthermore, the debilitating and functional changes experienced as a result of the disease or treatment can also limit an individual’s ability to return to work.32 Up to half of the patients with HNC who are employed at time of diagnosis are unable to return to work following treatment.23 Even if patients can return to work, this is often in a different capacity or role.33 In comparison to other cancer survivors, HNC patients are amongst those at highest risk for work-related disability May 2014
or quitting their work.34 Rehabilitation should be optimized for patients who experience vocational disabilities and are referred to a benefits adviser to ensure access to appropriate financial support. Sexuality
It is not uncommon for HNC patients to experience problems with sexuality following treatment, with younger patients experiencing more difficulties than older patients and lower QOL.35 Issues with regards to poor sexual performance to include reduced libido and enjoyment are prevalent and are often related to depression.36 Psychological distress
Psychological morbidity is often underdiagnosed and emotional distress is often viewed synonymously with a cancer diagnosis. Within the HNC population the prevalence rates for anxiety and depression are higher than for many other cancer diagnoses.37 There is great variability on the prevalence rates of depression, ranging from 13% to 52%.38 Depression is particularly high during treatment and in the first six months following treatment, and mild to moderate depression may continue for three to six years after diagnosis.38 Depression has been associated with younger patients,28,29,39,40 those with limited social support,41,42 being unmarried or living alone28,39,43 and in advanced stage of cancer.40,44 Not surprisingly, patients who experience multiple physical symptoms, such as pain, eating and swallowing difficulties and fatigue, are more likely to be depressed.42,45,46 Furthermore, patients have the legitimate fear of recurrence as recurrence rates for HNC are relatively high compared to other cancers. Ineffective coping strategies can be manifest as denial, substance abuse and behavioural disengagement and are associated with anxiety and decreased QOL.29,47 All health and social care professionals should be able to recognize psychological distress and establish and maintain supportive relationships,48 with designated professionals within the HN team appropriately trained in screening for
psychological distress, such as the Clinical Nurse Specialist, Social Worker and Psychologist. Failure to detect and treat elevated levels of distress decreases patients’ QOL, increases an individual’s dependency on healthcare and may jeopardize the outcomes of cancer therapies. Furthermore, the suicide rate in cancer patients is twice that observed in the general population.49 The relative suicide risk amongst cancer patients is highest in the first 5 years after diagnosis and declines gradually thereafter.
Conclusion Patients who survive HNC have many individualized needs. The majority of long-term HNC patients generally cope well with this severe illness and display good QOL, despite their functional difficulties and altered appearance. Those patient that are at higher risk of experiencing poorer QOL and psychosocial dysfunction are those with advanced disease, unmarried or with poor social support, younger, on combined treatment with multiple functional challenges, less optimistic and those requiring gastrostomy tube feeding. With improved survival rates there is a fundamental role for primary care in the long-term management and support of this group. The dental team has a central role in the holistic management of these patients and needs to recognize the impact of HNC. This care not only includes caries prevention and management and prevention of osteoradionecrosis, but also offering psychological support, disease surveillance and enabling urgent review appointments for patients with oral symptoms so that they can gain reassurance or prompt referral to the specialist HN team.
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13. Dropkin J. Body image and quality of life after head and neck cancer surgery. Cancer Practice 2001; 7(6): 309−131. 14. Larsson M, Hedelin B, Athlin E. Lived experiences of eating problems for patients with head and neck cancer? J Clin Nurs 2003; 12: 562−570. 15. Larsson M, Hedelin B, Johansson I, Athlin E. Eating problems and weight loss for patients with head and neck cancer: a chart review from diagnosis until one year after treatment. Cancer Nurs 2005; 28: 425−435. 16. Semple CJ, Dunwoody L, Kernohan WG, McCaughan E, Sullivan K. Changes and challenges to patients’ lifestyle patterns after treatment for head and neck cancer. J Adv Nurs 2008; 63: 85−93. 17. Terrell JE, Ronis DL, Fowler KE et al. Clinical predictors of quality of life in patients with head and neck cancer. Arch Otolaryngol Head Neck Surg 2004; 130(4): 401−408. 18. El-Deiry MW, Futran ND, McDowell JA, Weymuller EA Jr, Yueh B. Influences and predictors of long-term quality of life in head and neck cancer survivors. Arch Otolaryngol Head Neck Surg 2009; 135(4): 380−384. 19. Platteaux N, Dirix P, Dejaeger E, Nuyts S. Dysphagia in head and neck cancer patients treated with chemoradiotherapy. Dysphagia 2010; 25(2): 139−152. 20. Eisbruch A, Schwartz M, Rasch C et al. Dysphagia and aspiration after chemoradiotherapy for headand-neck cancer: which anatomic structures are affected and can they be spared by IMRT? Int J Radiat Oncol Biol Phys 2004; 60(5): 1425−1439. 21. Nutting CM, Morden JP, Harrington KJ et al. Parotid-sparing intensity modulated versus conventional radiotherapy in head and neck cancer (PARSPORT): a phase 3 multicentre randomised controlled trial. Lancet Oncol 2011; 12(2): 127−136. 22. Meyer TK, Kuhn JC, Campbell BH, Marbella AM, Myers KB, Layde PM. Speech intelligibility and quality of life in head and neck cancer survivors. Laryngoscope 2004; 114(11): 1977−1981. 23. Chandu A, Smith ACH, Rogers SN. Health-related quality of life in oral
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Singer S, Danker H, Dietz A, Pabst F, Meister EF, Oeken E, Thiele A, Schwarz R. Sexual problems after total or partial laryngectomy. Laryngoscope 2008; 118: 2218−2224. 37. Zabora J, BrintzenhofeSzoc K, Curbow B, Hooker C, Piantados S. The prevalence of psychological distress by cancer site. Psychooncology 2001; 10(1): 19−28. 38. Haisfield-Wolfe ME, McGuire DB, Soeken K, Geiger-Brown J, De Forge BR. Prevalence and correlates of depression among patients with head and neck cancer: a systematic review of implications for research. Onco Nurse Forum 2009; 36(3): E107−125. 39. Lambert MT, Terrell JE, Copeland LA, Ronis DL, Duffy SA. Cigarettes, alcohol, and depression: characterizing head and neck cancer survivors in two systems of care. Nicotine Tob Res 2005; 7(2): 233−241.
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40. Rogers LQ, Courneya KS, Robbins KT et al. Physical activity and quality of life in head and neck cancer survivors. Support Care Cancer 2006; 14(10): 1012−1019. 41. Karnell LH, Funk GF, Christensen AJ, Rosenthal EL, Magnuson JS. Persistent posttreatment depressive symptoms in patients with head and neck cancer. Head Neck 2006; 28(5): 453−461. 42. Verdonck-de Leeuw IM, Eerenstein SE, Van der Linden MH, Kuik DJ, de Bree R, Leemans CR. Distress in spouses and patients after treatment for head and neck cancer. Laryngoscope 2007; 117(2): 238−241. 43. Kugaya A, Akechi T, Okuyama TE et al. Prevalence, predictive factors, and screening for psychologic distress in patients with newly diagnosed head and neck cancer. Cancer 2000; 88(12): 2817−2823. 44. Aarstad HJ, Aarstad AK, Heimdal JH, Olofsson J. Mood, anxiety and sense of humor in head and neck cancer patients
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Cherith J Semple Simon A Killough
Quality of Life Issues in Head and Neck Cancer Abstract: Head and neck cancer (HNC) constitutes approximately 3% of all cancers in the UK, with in excess of 8500 new cases annually. Management of HNC depends on site, extent, histology, previous medical history and patient choice. A multidisciplinary approach is required to optimize patient wellbeing, owing to the significant functional and psychosocial implications that can impact on quality of life. Members of the dental team, to include the general dental practitioner, have a key role in patient care; therefore the dental team should be knowledgeable in the short-term and longer-term implications and how this impacts on quality of life. Clinical Relevance: This article offers the dental team with an overview of how HNC and the various treatments, such as surgery, radiotherapy and chemotherapy, impact upon quality of life, both in the short term and longer term. Dent Update 2014; 41: 346–353
Patients with HNC not only live with the potential of their illness being lifethreatening, but with the consequences of the disease or treatment itself, such as disfigurement, impaired speech and swallowing, as well as problems concerning finances, socializing and family worries. This affects patients’ quality of life (QOL) and impacts not only on them but also their families. QOL is difficult to define as it is a perceived subjective outcome. It is also a broad multi-dimensional concept which permeates many aspects of an individual’s life to include well-being, life satisfaction and spiritual beliefs. The World Health Organization defined QOL as
Cherith J Semple, PhD, BSc(Hons) Nursing, RN Macmillan Clinical Nurse Specialist − Head and Neck Cancer, South Eastern Health and Social Care Trust, Upper Newtownards Road, Belfast BT16 1RH and Simon A Killough, PhD, MFDS, FDS(Rest Dent), Consultant in Restorative Dentistry, Belfast Health and Social Care Trust, Grosvenor Road, Belfast BT12 6BP.
346 DentalUpdate
‘individuals’ perception of their position in life, in the context of their culture and value systems in their life in relation to their goals, expectations, standards and concern’.1 Length of survival is of paramount importance and remains the key primary endpoint of treatment, but measured alone it is an unsatisfactory measure of treatment success; therefore, functional status and quality of survival also needs to be assessed. This is especially apparent for patients with HNC because social interactions and emotional expression depends, to a great extent, on the functional and structural integrity of the head and neck region. Furthermore, there can be considerable individual variation on the priority a patient places on cure and level of post-treatment dysfunction that is deemed acceptable. What is technically possible might not be acceptable to some patients, thus it is key to have a good insight into the patient’s goals and value system. QOL differs between individuals at similar stages of disease, with some reporting unacceptably poor QOL, which may be equated to general coping styles and personality.2 Health-related QOL (HRQOL) is considered to be a specific subset of QOL,
assessing treatment-related symptoms, psychological aspects, social interaction and physical function.3 It is not the same as toxicity. In the past two decades, a number of validated questionnaires have been developed, which has proved helpful in the assessment of HRQOL. Examples of such questionnaires include the University of Washington Quality of Life Questionnaire (UWQOLv4) and the European Organization for Research and Treatment for Cancer (EORTC QLQ H+N 35) and FACT H+N. These questionnaires have provided clinicians with a better insight into factors that predict HRQOL and can be an effective way of helping patients to identify and prioritize preferred outcomes or treatment goals. Measuring HRQOL can also help monitor response to treatment.
Significance of QOL in HNC With ongoing developments in cancer diagnostics and treatments, the overall survival rate for HNC has improved marginally, but mainly for those from higher socio-economic backgrounds.4 Although patients are living longer, some continue to experience disease and treatment-related May 2014
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DentalOncology
long-term sequelae. The main predictors for poorer QOL in this patient group are combined rather than single modality treatment and advanced stage of disease.5 Furthermore, patients are at risk of late effects of treatment that persist years beyond the end of treatment, which may include xerostomia, swallowing problems and osteoradionecrosis (ORN) and are important determinants of long-term QOL. Patients with HNC are more likely to have smoking histories and be problemdrinkers and a combination of psychosocial difficulties with maladaptive coping strategies can lead to decreased levels of overall QOL for HNC survivors, treatment compliance and survival. Discovering and understanding the important challenges that impact on QOL for patients with HNC is necessary to help direct clinical practice and enable appropriate support and improved adjustment after treatment. Nevertheless, it is important to note that different aspects of functional, psychological or social challenges should not be compartmentalized but viewed as interrelated and often compound to lifestyle alterations. Furthermore, despite the burden of symptoms and functional difficulties that some individuals experience, this does not necessarily translate into poorer QOL for all patients, which in part can be explained by their cancer diagnosis granting them permission and an opportunity to reprioritize and restructure important values and goals.
QOL over time In general, patients undergoing treatment for HNC will experience a decrease in QOL during and after treatment, irrespective of cancer stage or treatment type.5 This is especially apparent between diagnosis and 3 months after the start of treatment.6 This is followed by a slow improvement over time approximating baseline levels (pre-treatment) by 12 months post-treatment.7 Despite general QOL nearing the baseline by 12-months following treatment, patients often report specific symptoms, functional problems related to HNC and its treatment and psychosocial concerns including fear of recurrence during follow-up (Table 1). Healthcare professionals should not ignore May 2014
emotional distress, symptoms or functional problems as these may have a profound impact on physiologic or psychological well-being. For example, dysphagia may impact on nutritional intake, thus contributing to fatigue and poorer QOL.
Factors impacting on QOL A number of physical, social and psychological factors can impact on QOL (Table 1) and an overview of the main aspects will be summarized below.
Changes in appearance
Disfigurement is most common after surgery, especially if tumour resection includes removal of bone or involvement of the facial nerve (Figure 1). While postoperative swelling subsides within a few weeks of surgery, oedema as a result of disruption to lymphatic drainage may take a number of months to subside. Radiation and concurrent chemotherapy can precipitate tissue swelling, inflammation, pain and skin reactions that can also persist well after the completion of treatment. Facial disfigurement can profoundly affect self-concept, social interaction and emotional wellbeing and can translate into an array of psychosocial difficulties to include: Anxiety; Worsening relationships with partner; Social isolation;8 and Depression.9 When considering how an individual copes with his/her disfigurement the most influential factor is not the degree of disfigurement resulting from the disease or treatment but the importance and meaning that the patient attributes to his/her appearance.10 Adjustment to disfigurement is variable and, whilst many patients adjust well, others experience high levels of distress. Those at greatest risk appear to be female and those with poor social support.8 Patients look to the reaction of family and friends to gauge the extent of their disfigurement and those with good social networks are more likely to receive positive reinforcement and opportunities to engage socially.11 One of the most difficult aspects that patients with HNC must deal with is unwanted intrusions, such as staring and comments.12
Appearance Dental Status Eating and Swallowing (PEG Feeding) Employment Issues Fatigue Osteoradionecrosis Psychosocial Distress Sexuality Shoulder Dysfunction Speech and Voice Trismus Xerostomia Table 1. Factors that impact on QOL for patients with HNC.
Figure 1. Facial disfigurement following surgery and chemoradiotherapy for recurrent squamous cell carcinoma floor of mouth with metastatic neck disease.
When considering altered appearance, an important facet is preoperative expectations, as inaccurate perceptions of post-operative appearance has been significantly related to overall distress and poorer abilities to cope.13 Patients with disfigurement who are experiencing psychosocial difficulties should be offered interventions to help them cope more effectively. This can range from encouraging the patient to engage early with self-care to grooming following surgery, early graded exposure and reintegration to social situations, referral to a camouflage therapist, social skills training, or referral to a clinical psychologist for individuals who are experiencing significant psychosocial distress. Changes in eating and swallowing
Difficulties with chewing and swallowing are commonly reported after DentalUpdate 347
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treatment, but degree of severity often depends on the extent and type of treatment (Table 2). Other oral symptoms may include xerostomia, hypersalivation, trismus and altered taste, which can also impact on QOL (Figure 2). At the most fundamental level these alterations to oral function often interfere with the kinds of food and fluids that can be swallowed. A significant number of patients require altered diet textures, but patients with advanced HNC who experience dysphagia may require gastrostomy tube-feeding to maintain their nutritional needs. Also, numerous patients report that eating requires additional time, which reduces the pleasure of eating.14 Oral incontinence often leads to avoidance of eating in public owing to embarrassment and patients experience altered social interactions and feelings of isolation.15,16 The presence of a long-term gastrostomy feeding tube is a very strong predictor of poorer QOL,17 having a greater influence on post-treatment QOL than persistence of disease.18 Eating and swallowing difficulties can be long-term, especially if there is loss of anatomical structures during surgery and/or fibrosis from radiotherapy, reducing the range of tongue and jaw movements, diminishing pharyngeal wall or laryngeal movement, and thus increasing the risk of aspiration. Furthermore, combined chemoradiotherapy is frequently used for patients with advanced HNC to improve locoregional control, organ preservation and/or survival outcomes. The addition of concurrent chemotherapy to radiation therapy increases the severity and intensity of severe early mucosal and pharyngeal toxicity, but also late toxicity. Some patients have persistent longerterm effects such as laryngeal oedema, causing dysphagia and aspiration, thus they are unable to manage an oral diet which negatively impacts on QOL.19,20 It is important that patients are referred to the dietitian and speech and language therapist to assess, monitor and provide support and teach skills and strategies for patients and their families to regain a sense of control on how best to manage their nutritional intake. Radiation-induced xerostomia is the most commonly reported late side-
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effect of radiotherapy to the HN region and adversely affects QOL. Lack of saliva affects speech and swallowing and can also accelerate dental caries. Compared with conventional radiotherapy, intensitymodulated radiotherapy (IMRT) can reduce irradiation of the parotid glands, which significantly reduces the incidence of xerostomia and leads to recovery of saliva secretion and improvements in associated QOL21 (Table 2).
a
b
Changes in speech and voice
Change in speech is most commonly associated with surgical intervention to the oral cavity or larynx (laryngectomy). Voice changes can also result from the short-term effects of oedema to the longer-term effects of fibrosis, mainly associated with radiotherapy. Speech consistently emerges as a key functional issue of concern for patients.22 The psychological consequences of altered speech and voice can be profound and, prior to embarking on a specific treatment plan, it is imperative that patients are well informed about long-term changes alongside potential techniques that aid voice rehabilitation. Shoulder dysfunction
Significantly worse QOL scores have been reported in patients who received neck dissection compared to those without.23 Shoulder dysfunction is especially prevalent after a radical neck dissection, where the accessory nerve is severed as part of the procedure, leading to denervation of the trapezius muscle. The trapezius muscle is responsible for the upward rotation of the shoulder during abduction and flexion and is the major stabilizer for the scapula. The loss of muscle enervation leads to motor dysfunction and shoulder misalignment and without exercise the range of shoulder movements becomes limited and painful. With the recognition that radical neck dissections lead to significant morbidity, surgical procedures have been modified. Consequently, patients with their spinal accessory nerve and sternocleidomastoid muscle preserved appear to have fewer difficulties with work-related, leisure-related and daily
Figure 2. A 63-year-old male one year following a course of chemoradiotherapy for tonsillar carcinoma demonstrating: (a) dental caries; and (b) trismus, having a negative impact on quality of life.
Mucositis Xerostomia Taste Disturbances Infections Trismus Psychological Issues Table 2. Effects of non-surgical management of HNC.
activities such as dressing.24 Nevertheless, it should be noted that any type of neck dissection produces fibrosis in the neck, which may lead to a feeling of stiffness or constriction with overall loss of function and pain.25 Pain
There is a limited number of studies that have solely examined pain with this patient population. Of the available studies, pain is often reported as a symptom correlated with recurrence.26 For a significant number of other patients, pain can be an ongoing symptom well after curative treatment, with Chaplin and Morton27 reporting that approximately one-quarter May 2014
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of patients experience pain at 12 and 24 months post-treatment. Of particular interest, there would appear to be an association between high levels of pain and depression with reports of poorer QOL;23,28,29 therefore, this would highlight the need for regular assessment and improved pain management during and after treatment for HNC. Analgesia in these patients often includes opioid analgesics which may mask pulpitic symptoms from a carious dentition and thereby delay management. Fatigue
A diagnosis of HNC and its associated treatment is often correlated with fatigue. Fatigue is especially amplified with multimodality treatment and interferes with QOL.30 Fatigue is frequently accompanied with other symptoms, such as insomnia and mood disturbance. Specific mechanisms for persistent fatigue are currently receiving more attention as patients are living longer as survivors of HNC. It has been proposed that fatigue is the result of the production of proteins by active growing cancer cells. Causes such as anaemia, hypothyroidism, sleep disturbance, depression and inadequate nutritional intake should be considered, as attempts to address fatigue successfully can enhance QOL. Therapeutic strategies for the treatment of fatigue in HNC have not been well-defined but physical exercise, psychotherapy and relaxation have been successful interventions for general cancer cohorts.31 Employment issues
Complex treatment regimes are often required for the management of HNC and can interfere with daily work patterns, not only for patients but their families, and can pose a major financial burden. Furthermore, the debilitating and functional changes experienced as a result of the disease or treatment can also limit an individual’s ability to return to work.32 Up to half of the patients with HNC who are employed at time of diagnosis are unable to return to work following treatment.23 Even if patients can return to work, this is often in a different capacity or role.33 In comparison to other cancer survivors, HNC patients are amongst those at highest risk for work-related disability May 2014
or quitting their work.34 Rehabilitation should be optimized for patients who experience vocational disabilities and are referred to a benefits adviser to ensure access to appropriate financial support. Sexuality
It is not uncommon for HNC patients to experience problems with sexuality following treatment, with younger patients experiencing more difficulties than older patients and lower QOL.35 Issues with regards to poor sexual performance to include reduced libido and enjoyment are prevalent and are often related to depression.36 Psychological distress
Psychological morbidity is often underdiagnosed and emotional distress is often viewed synonymously with a cancer diagnosis. Within the HNC population the prevalence rates for anxiety and depression are higher than for many other cancer diagnoses.37 There is great variability on the prevalence rates of depression, ranging from 13% to 52%.38 Depression is particularly high during treatment and in the first six months following treatment, and mild to moderate depression may continue for three to six years after diagnosis.38 Depression has been associated with younger patients,28,29,39,40 those with limited social support,41,42 being unmarried or living alone28,39,43 and in advanced stage of cancer.40,44 Not surprisingly, patients who experience multiple physical symptoms, such as pain, eating and swallowing difficulties and fatigue, are more likely to be depressed.42,45,46 Furthermore, patients have the legitimate fear of recurrence as recurrence rates for HNC are relatively high compared to other cancers. Ineffective coping strategies can be manifest as denial, substance abuse and behavioural disengagement and are associated with anxiety and decreased QOL.29,47 All health and social care professionals should be able to recognize psychological distress and establish and maintain supportive relationships,48 with designated professionals within the HN team appropriately trained in screening for
psychological distress, such as the Clinical Nurse Specialist, Social Worker and Psychologist. Failure to detect and treat elevated levels of distress decreases patients’ QOL, increases an individual’s dependency on healthcare and may jeopardize the outcomes of cancer therapies. Furthermore, the suicide rate in cancer patients is twice that observed in the general population.49 The relative suicide risk amongst cancer patients is highest in the first 5 years after diagnosis and declines gradually thereafter.
Conclusion Patients who survive HNC have many individualized needs. The majority of long-term HNC patients generally cope well with this severe illness and display good QOL, despite their functional difficulties and altered appearance. Those patient that are at higher risk of experiencing poorer QOL and psychosocial dysfunction are those with advanced disease, unmarried or with poor social support, younger, on combined treatment with multiple functional challenges, less optimistic and those requiring gastrostomy tube feeding. With improved survival rates there is a fundamental role for primary care in the long-term management and support of this group. The dental team has a central role in the holistic management of these patients and needs to recognize the impact of HNC. This care not only includes caries prevention and management and prevention of osteoradionecrosis, but also offering psychological support, disease surveillance and enabling urgent review appointments for patients with oral symptoms so that they can gain reassurance or prompt referral to the specialist HN team.
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