42 Psychosocial Rehabilitation of Oral Cancer Patients
Treatment for oral cavity malignancies has the potential to interfere with the most fundamental activities of daily function, such as eating, drinking, speaking, and breathing. These impairments in fundamental daily functions are related to the physical changes and effects of treatment, as discussed in earlier chapters of this book. However, these changes have a dynamic relationship with quality of life and psychosocial function in survivorship. Psychosocial survivorship includes areas of social functioning (i.e., employment, finances, insurance, social interactions, and cognitive impairment) and psychological functioning (i.e., depression/anxiety, substance use, fear of recurrence, body image, and stigma). The caregiver should also be included in the supportive care of the patient with head and neck cancer (HNC). Psychosocial interventions for patients and caregivers exist. However, given the limited access to behavioral health specialists (BHS) with experience in HNC, stepped care is followed in which all patients receive common low-intensity treatment (e.g., patient education) and only those with additional need are “stepped up” to more intensive treatment from a BHS. Those medical providers who treat HNC are encouraged to develop knowledge of the BHS/psych-oncology specialists in their hospital and community so that they can have the expertise to work with HNC patients and their caregivers. Larger tertiary specialty care centers that treat HNC are encouraged to integrate BHS/psych-oncology specialists, such as clinical health psychologists, into their multidisciplinary approach to aid in treating the more complex and advanced stage HNC patients that these centers typically treat.
Head and neck cancer (HNC) survivors account for 3% of all cancer survivors in the United States, 1 and treatment for HNC impacts the most visible aspects of the body. This impact has the potential to interfere with the most fundamental activities of daily function, such as eating, drinking, speaking, and breathing, particularly with oral cavity malignancies. Improvements in treatment have resulted in more patients surviving HNC for longer span of time. 2 These impairments in fundamental daily functions are related to the physical changes and effects of treatment, as discussed in earlier chapters of this book. However, these changes have a dynamic relationship with quality of life (QoL) and psychosocial function in survivorship. Psychosocial survivorship includes areas of social functioning such as employment, finances, insurance, social interactions, and psychological functioning, including symptoms of depression and anxiety, substance use, fear of recurrence, body image, and stigma.
The American Cancer Society Head and Neck Cancer Survivorship Care Guidelines include recommendations for assessment and management of long-term psychosocial effects of HNC and health promotion. 3 In addition, LIVESTRONG Essential Elements of Survivorship Care identifies psychosocial elements of psychosocial assessment, such as symptom screening through systematic evaluation of psychosocial distress through survivorship continuum, and care, including access to psychoeducational materials on stress management, support groups, appropriate referrals within the institution or community. Moreover, family/caregiver support, such as spousal support and/or education groups, bereavement groups, psychoeducational materials, appropriate referrals, as well as health promotion education and counseling for practical issues, such as finances, insurance, and employment—both education and appropriate referrals, are included in these essential elements. 4
Previous research has consistently demonstrated that QoL improves, returning approximately to baseline, by a year post treatment, after the greatest decrease in QoL seen at 3 to 4 weeks into adjuvant radiotherapy. 5 Psychosocial functioning has been associated with patient’s QoL, adherence to medical recommendations, and overall morbidity and mortality. 6 Other research has demonstrated that psychosocial function is an area that can be influenced by identification and intervention, thus improving QoL in survivorship, adherence, and possibly disease-free survival. 7 Additionally, though not often considered part of survivorship care of the patient, the psychosocial functioning of their family or caregivers has also been shown to impact patient’s QoL, adherence, and overall morbidity. 8 The subsequent subsections of this chapter will review the various psychosocial considerations in oral cancer survivorship, some of which is common across cancer in general.
42.2 Primary Psychosocial Issues in Survivorship
42.2.1 Socioeconomic Considerations and Disparities
As highlighted in the Institute of Medicine publication “Unequal Treatment,” those from lower socioeconomic groups or who are medically underserved are more likely to be diagnosed at later stages, and these people have worse treatment outcomes and experience shortened survivorship. 9 Internationally, minority groups are more likely to be poor, have lower education levels, lack health insurance coverage or have poorer insurance coverage, and have no source of primary care. 9 These treatment disparities result in more frequent cancer recurrence, shorter disease-free survival periods, and higher mortality. 9 Low-income individuals tend to experience more chronic stress related to job insecurity, financial strain, greater environmental exposures to toxins at work and home, less social support, and have more behavioral risk factors associated with poor health, such as alcohol use, smoking, sedentary lifestyle, and poor nutrition. 10 Moreover, even in countries where insurance is less of a barrier, delays in care are common among lower socioeconomic status (SES), such as diagnosis at later stage, longer intervals between onset of symptoms, surgical referral, and hospital admission, access to comprehensive cancer treatment at regional center rather than local hospital, palliative care and appropriate pain management, new technologies that allow for a prognostic assessment and prediction of response to certain treatments. 10 Overall, the impact of cancer is greater for individuals with poorer living conditions and lower SES.
The burden of cancer mortality disproportionately falls on lower SES due to disparities in psychosocial factors (i.e., coping, stress, and social support), health behaviors, comorbidities, access to care, screening, and treatment, and access to and understanding of clinical trials. 10 Further, the late effects of treatment are also more pronounced in patients of lower SES. Lower SES tends to be associated with lower QoL after cancer treatment, less chances of return to work, slower re-employment, involuntary unemployment, and greater chances of early retirement. 10 Difficulties with re-employment or retirement result in income reductions that can contribute to decreased access to resources to maintain health, such as surveillance and insurance for preventative care. The Institute of Medicine report “From cancer patient to cancer survivor: Lost in transition” makes recommendations for survivorship plans to include information on legal protections regarding employment and access to health insurance. 11
A newly recognized area of psychosocial concern in survivorship is financial toxicity, or the problems that patients face that are related to the cost of their medical care. Financial toxicity includes cost of treatment (co-pays, spend downs, out of pocket costs for DMEs), cost of rehabilitation (physical/occupational therapy, dentistry/dental reconstruction, speech language pathologist, RD), lost income for diagnostic and treatment appointments (often both patient and caregiver), travel costs for many with tertiary centers providing specialized care, disability due to treatment making it difficult or impossible to return to prior employment, limited flexibility in employers to offer accommodations on the job, difficulty obtaining insurance in future, and ongoing surveillance toxicity (often requiring appointments with each oncology provider). 10 In addition, often patients do not return to work, decisions about moving, selling off cars, discontinuing health insurance may need to made in order to cover costs of basic needs. 12
42.2.2 Behavioral Risk: Tobacco Use and Cessation
The main behavioral risk factors associated with HNC are tobacco use, which has been linked to 85% of squamous cell carcinoma HNC, alcohol abuse, and betel nut chewing, which is common in southeast Asia and associated with oral cavity malignancies, and sexual activity and number of sexual partners, which is associated with risk of human papilloma virus (HPV). 13 Throughout treatment, the main focus for behavioral interventions historically has been on tobacco cessation due to its effects on treatment efficacy, worsening treatment side effects, and higher rates of recurrence. 14
Tobacco use is influenced by physical dependence on nicotine, operant and classical conditioning, environmental and social factors, cognitive expectations, active depression, and active substance abuse. Physical dependence refers to the level of nicotine dependence, typically related to the amount smoked daily and how soon after waking one has the first cigarette. 15 Environmental and social factors highlight the importance of involving family members in cessation education because often family members also smoke and can influence cessation attempts. 10 , 16 Cognitive expectations include beliefs about the benefits of smoking, fatalistic debriefs (e.g., “I’ve already got cancer”), self-efficacy and motivation to quit, fear of recurrence, and decreased risk perceptions associated with smoking. 17 , 18 Active depression is associated with decreased motivation to quit and cessation relapse is more likely to occur with active depression. 19 Finally, active alcohol abuse is commonly linked with tobacco use, and continuing alcohol use has been associated with difficulties in tobacco cessation and being less likely to enroll in tobacco cessation programs. 20
With up to 48% of oral cavity and pharynx cancer related deaths being attributable to tobacco use, 21 tobacco cessation at diagnosis is important. Prior research has demonstrated that continued smoking after cancer diagnosis has known impacts on overall survival, decreased treatment effects of radiation therapy, chemotherapy, and surgery, increased occurrence of treatment complications (i.e., infection, poor wound healing, exacerbated side effects of treatment like mucositis), exacerbation of immune function due to nicotine’s suppressive effect, increased weight loss due to suppression of appetite, increased risk of depression/anxiety following cancer treatment, decreased QoL in survivorship, and increased risk of recurrence and second primaries. 10
Unfortunately, 14 to 58% of patients have been reported to continue to smoke in survivorship in a 3-year follow up, with the percentage smoking remaining fairly stable across this period. Similar to the general population, relapse after cessation occurs in up to 60% patients. 22 , 23 However, unlike general population who relapse in first week after cessation, patients with cancer tend to relapse in the first few months following quit attempt, typically after active treatment ends. 24 Tobacco cessation is most likely to happen in patients with more severe disease or more invasive treatment; thus patients with earlier stage disease or tumors of oral cavity compared to larynx with total laryngectomy are more likely to continue smoking. 24 Furthermore, older patients are typically heavier smokers and have more difficulty with quitting. 25 Of note, white patients are more likely to participate in smoking cessation programs, although black patients have higher self-efficacy for quitting and are more interested in cessation services. 26
It is important to note that patients are also highly motivated to quit with many making quit attempts at diagnosis, thus making time between diagnosis and end of active treatment an optimal window for provision of smoking cessation interventions. 27 Research shows that for patients with cancer, the optimal window for cessation intervention is in the preoperative period.
Brief tobacco interventions provided by the patient’s medical provider can have a large impact. The “5 As” from medical providers, a brief 3-minute intervention, has been proven beneficial in oncology. 28 The 5 As include: ask about tobacco use, advise to quit using a clear and personalized message, assess willingness to quit, assist to quit, and arrange follow-up and support. 29 When providing assistance in quitting, research has shown that single treatment approaches have limited success and long-term outcomes are best seen with multimodal treatment. 29
It is recommended that pharmacotherapy be routinely offered to smokers attempting to quit. 30 Pharmacotherapy with common dosage is shown in ▶ Table 42.1. All forms of nicotine replacement therapy (NRT) are relatively equivalent with a 6-month abstinence of 20 to 25% with single modality. 30 All but the transdermal patch is contraindicated in oral malignancies. 10 NRT is typically used during the first 8 to 12 weeks after cessation, when nicotine withdrawal symptoms are strongest. There are specific considerations with NRT in cancer treatment, namely evidence that nicotine may accelerate tumor growth, inhibit apoptosis induced by several chemotherapies, negative response to radiotherapy, and issues with cardiovascular effects following microvascular free flap surgeries. 10 Bupropion SR (Wellbutrin ®/Zyban ®) is a selective serotonin-norepinephrine reuptake inhibitor that attenuates nicotine withdrawal and cravings and reduces post cessation weight gain. It appears to inhibit neuronal uptake of dopamine and norepinephrine (neurotransmitters involved in maintenance of nicotine dependence) and may also have antagonistic effect on nicotine receptors (decreasing perceived satisfaction with smoking). 30 Bupropion has demonstrated abstinence rates double that compared to placebo, with a 6-month abstinent rate of 24%. Bupropion is recommended to be started 1 week prior to planned quit date to achieve steady-state blood levels. Bupropion is contraindicated in those with history of seizure disorder or factors that increase seizure risk (e.g., alcoholism, serious head trauma) and those using monoamine oxidase inhibitors. 10 Varenicline (Chantix ®) is a partial antagonist of nicotinic acetylcholine receptors, thus appears to reduce cravings and withdrawal symptoms related to nicotine, as well as decreasing the reinforcing effects of smoking (including perceived satisfaction). Varenicline typically outperforms bupropion, with triple the abstinence compared to placebo, and a 6-month abstinence of 33%. 30 Varenicline is recommended to be started 1 to 4 weeks prior to the planned quit date to achieve steady-state blood levels. Common side effects include mild/moderate nausea, agitation, and changes in behavior that are not typical for the person. There is also some evidence that varenicline may increase the risk of a major cardiovascular event. 10 As single-modality treatment is not as effective as multimodal therapy for tobacco cessation, there are recommendations to combine long-acting, relatively stable medication (i.e., NRT patch) with shorter-acting medication as needed (i.e., NRT gum, nasal spray, lozenge, or inhaler) or combining the NRT patch with bupropion SR for improved abstinence rates. 30
In addition to pharmacotherapy for tobacco cessation, behavioral treatments are recommended adjuvants. 30 Key recommendations combine counseling and medication, as it is more effective approach than either alone in producing abstinence, with highest rates of abstinence seen in pharmacotherapy with intensive counseling (33% abstinence). 30 The higher abstinence with combination therapy is thought to be due to pharmacotherapy reducing withdrawal symptoms and craving, while behavioral treatments (i.e., counseling) teaching cognitive and behavioral coping strategies and providing valuable social support. Behavioral treatments include self-help materials, telephone quit lines, and both brief and intensive counseling interventions. Self-help materials (e.g., pamphlets, booklets, videos) have been found ineffective in initial quit attempts, though these can be helpful for preventing smoking relapse when provided shortly after quitting smoking. 30 Telephone quit lines, such as 1-800-QUIT-NOW, provide a central access point to state and federal quit lines. Telephone counseling can provide personalized and intensive help and can have greater therapeutic reach than face-to-face counseling, as it is more readily available, and has a 6-month abstinence rate of 3 to 5% if used as a single modality. 30
Brief interventions are typically provided by medical providers. Appropriately provided physician advice increases abstinence by 2.3 to 2.5%. 10 There is a dose response with brief interventions, with minimal counseling (< 3 minutes) yielding 13.4% 6-month abstinence, low-intensity counseling (3-10 minutes) yielding 16%, and higher-intensity counseling (> 10 minutes) yielding 22.1% 6-month abstinence. 23 Six-month abstinence rates also increase with the number of counseling meetings and/or the number of clinician types delivering the cessation message to the patient. Intensive interventions are empirically supported, multisession, typically offered through smoking cessation clinics or BHSs, either in group or individual format. The interventions typically include patient education regarding nicotine dependence and withdrawal, identifying triggers to use nicotine, teaching and practicing both cognitive and behavioral responses for coping with urges and stressors, discussing long-term risk factors, and teaching how to respond to a relapse. When used as a single-modality treatment, intensive interventions have a 6-month abstinence rate of 16.2%. 23 , 30