Psychological Factors Associated with Head and Neck Cancer Treatment and Survivorship: Evidence and Opportunities for Behavioral Medicine

Psychological Distress

The experience of psychological distress, particularly depression—whether as subclinical depressive symptomatology or clinical depressive disorder—is quite common among cancer patients and may occur throughout the course of illness, often persisting months beyond the conclusion of treatment in cancer survivors (Massie, 2004; Pirl, 2004). The basis for this distress is likely multi-faceted and may be a function of the diagnosis itself, the presence of burdensome disease and treatment sequelae, declines in HRQOL, and/or the possibility of disease progression, recurrence, or death.

Notably, depression in HNC patients has been estimated to be more prevalent than in other types of cancer (Massie, 2004).³ Estimates vary by assessment method (i.e., self-report measures vs. diagnostic interview), but indicate that between approximately fifteen and fifty percent of HNC patients suffer some degree of depression at any given point across the disease trajectory (e.g., Haisfield-Wolfe, McGuire, Soeken, Geiger-Brown, & De Forge, 2009; Lydiatt, Moran, & Burke, 2009) and may affect immunocompetence, treatment adherence, self-care behaviors, resocialization, and aspects of HRQOL (DiMatteo, Lepper, & Croghan, 2000; Howren, Christensen, Karnell, & Funk, 2010; Jerant, von Friederichs-Fitzwater, & Moore, 2005; Spiegel & Giese-Davis, 2003). Often, depression and other forms of distress go unreported to, or unrecognized by, HNC clinicians (see Pirl et al., 2007).

Numerous studies have evaluated the impact of depression on various global and HNC-specific HRQOL domains. For example, Howren and colleagues (2010) found that subclinical depressive affect present at diagnosis, before the initiation of treatment, was associated with poorer HRQOL one year later after adjusting for baseline HRQOL values as well as age, gender, marital status, disease site and stage, alcohol and tobacco use, and physical comorbidities. Specifically, those patients scoring 10 or above on the Beck Depression Inventory (BDI; Beck, Rush, Shaw, & Emery, 1979) failed to regain normal functioning by one year postdiagnosis across each of four HNC-specific domains including speech, eating, facial aesthetics, and social disruption as measured by the HNCI (Funk et al., 2003). In contrast, those patients falling below this threshold reached normal functioning, on average, by one year postdiagnosis in three of the four domains listed above. Similarly, in a study assessing depression over time (i.e., at the outset of treatment [baseline], conclusion of treatment, and four weeks thereafter) using the Patient Health Questionnaire-9 (PHQ-9; Kroenke, Spitzer, & Williams, 2001), Britton et al. (2012) reported that baseline depression was associated with decreased nutritional status over the course of treatment for HNC. In a study of HNC patients with (versus without) persistent posttreament depressive symptomatology (i.e., patients with consistently elevated BDI scores for six months or more beyond the conclusion of treatment), Karnell and colleagues (2006) reported that patients experiencing persistent depressive affect were more likely to report worse HNC-specific HRQOL outcomes after adjusting for various clinical characteristics. Similar results have been found in other studies measuring depressive symptomatology and/or more general distress in HNC patients (e.g., Bornbaum, Fung, Franklin, Nichols, Yoo, & Doyle, 2011; Chan, Lua, Starmer, Sun, Rosenblatt, & Gourin, 2011; de Leeuw, de Graeff, Ros, Blijham, Hordijk, & Winnubst, 2000a).

Despite evidence of its presence at all stages of the disease trajectory (Hammerlid et al., 1999; Neilson et al., 2010), relatively few studies have primarily aimed to evaluate the association between anxiety and clinical or HRQOL outcomes in this population (e.g., Chen, Yu, Chu, Hung, Tsai, & Liao, 2010; Horney et al., 2011; Nielson et al., 2010). For example, Chen and colleagues (2010) compared 165 HNC inpatients, divided by caseness according to the anxiety subscale of the Hospital Anxiety and Depression Scale (HADS; Zigmond & Snaith, 1983), on several outcomes including disease impact, symptom distress, and supportive care needs. The authors found that patients with high levels of anxiety were more likely to report increased disease impact including disease-specific intrusion and avoidance, although the groups did not differ significantly relative to symptom distress and supportive care needs. More commonly, anxiety is considered only when measures such as the HADS are used to capture psychological distress, but depression and anxiety subscale scores are also evaluated as predictors or correlates of HRQOL and/or other clinical and psychosocial outcomes, sometimes as a secondary aim of the study (e.g., Kobayashi, Sugimoto, Matsuda, Matsushima, & Kishimoto, 2008; Kugaya et al., 2000; Llewellyn, McGurk, & Weinman, 2007a).

Body Image/Disfigurement

The effects of disease and treatment often cannot be concealed by HNC patients, making those who suffer from facial disfigurement vulnerable to distress, intimacy issues, social isolation, stigma, and untoward behavior from others (Callahan, 2005; Clarke, 1999; Fingeret, Yuan, Urbauer, Weston, Nipomnick, & Weber, 2011; Lebel, Castonguay, Mackness, Irish, Bezjak, & Devins, 2011). Patients often indicate that disfigurement is a primary treatment concern (e.g., Fingeret et al., 2011; List et al., 2000), which is not surprising given the importance of one's appearance to self-concept. However, few studies have investigated the impact of disfigurement on HRQOL outcomes in HNC. Those studies that have investigated this relationship have not been entirely consistent, perhaps due to the inherent difficulties in assessing disfigurement (see Clarke, 1999; Katz, Irish, Devins, Rodin, & Gullane, 2000) as well as individual differences in perceptions of, and reaction to, disfigurement.

For example, Fingeret and colleagues (2011) surveyed 280 HNC surgical patients at different stages of the disease trajectory (including those less than/greater than one year posttreatment) regarding dissatisfaction with body image and its relation to condition-specific HRQOL. It was reported that over half of patients expressed frequent concern about changes in appearance, one-third would have liked additional resources to help cope with such concerns, and self-reported dissatisfaction with body image predicted worse HRQOL outcomes including emotional, functional, physical, and social well-being. Katz, Irish, Devins, Rodin, and Gullane (2003) similarly reported that disfigurement (assessed via observer ratings) was significantly related to depression in 82 patients approximately two years removed from treatment. In a study of 51 HNC patients and 44 of their partners, however, Vickery and colleagues (Vickery, Latchford, Hewison, Bellew, & Feber, 2003) did not find an association between observer-rated disfigurement and diminished HRQOL, which is consistent with some other studies on this topic (e.g., Baker, 1992; Rapaport, Kreitler, Chaitchik, Algor, & Weissler, 1993).

In part due to these inconsistencies, some have looked for possible moderators of the relationship between disfigurement and HRQOL and/or other indicators of well-being. For example, Hagedoorn and Molleman (2006) investigated the moderating role of social self-efficacy, defined as the extent to which patients believe themselves capable of exerting control over the reactions and openness of others, in 76 HNC patients during a routine clinic visit. Patients were asked to complete measures of social self-efficacy, distress, and social isolation; both patients and physicians completed judgments of facial disfigurement. Regression analyses demonstrated that facial disfigurement was positively associated with psychological distress only when social self-efficacy was low. In addition, the same pattern was observed regarding distress in reaction to others' negative behaviors, as well as social isolation. These results are consistent with work in other patient populations (e.g., Leary, Rapp, Herbst, Exum, & Feldman, 1998), but more research is needed to further specify the importance of social self-efficacy and other possible moderating variables.

Personality/Individual Differences

Continued Tobacco & Alcohol Use

Perhaps the most significant problem facing HNC patients and clinicians is the continued use of tobacco and alcohol beyond diagnosis, which negatively affects treatment efficacy, HRQOL, and survival (De Boer et al., 1998; Hall, Groome, & Rothwell, 2000; Mayne, Cartmel, Kirsch, & Goodwin, 2009). For example, continued smoking during and after treatment may worsen the severity of mucositis, a common side effect of chemotherapy and radiotherapy in which the cells lining the inside of the mouth become inflamed, leading to difficulties in eating and swallowing. Mucositis not only causes significant discomfort and compromised functioning, but as severity increases, so do breaks in treatment, patient hospitalizations, and possibly mortality (see Trotti et al., 2003). Similar results in patients who continue to use alcohol after diagnosis have been reported (Miller, Day, & Ravenel, 2006) and, as noted above, these behaviors greatly increase the probability of cancer recurrence and/or the development of a second primary tumor. Estimates indicate that between one-third and one-half (or more) of HNC patients continue to use tobacco and/or alcohol beyond diagnosis and treatment (Danker et al., 2011; Deleyiannis, Thomas, Vaughn, & Davis, 1996; Duffy et al., 2002; Ostroff et al., 1995), perhaps because some patients are unaware that smoking and drinking lead to HNC or believe quitting is futile in light of a life-threatening diagnosis (Fabian, Irish, Brown, Liu, Gullane, 1996; Sharp & Tishelman, 2005). While many patients do manage to quit during treatment, nearly a quarter of those patients relapse within twelve months (Gritz, Schacherer, Koehly, Nielsen, & Abemayor, 1999), highlighting the need to integrate timely, targeted cessation interventions into standard medical care.

At present, relatively little research has evaluated psychological factors associated with continued smoking and/or alcohol use specifically in HNC patients, with much of the work in this context focusing on tobacco rather than alcohol, in part, because smoking is considered to be the greater of the two risks (Viswanathan & Wilson, 2004). Despite limited evidence, several psychosocial and behavioral factors that may perpetuate continued use (and therefore complicate cessation efforts) and/or decrease HRQOL in HNC patients have been identified including psychological distress, motivation to quit, illness beliefs and attributions, perceived self-efficacy, and patient risk perceptions (e.g., Christensen, Moran, Ehlers, Raichle, Karnell, & Funk, 1999; Duffy, Scheumann, Fowler, Darling-Fisher, & Terrell, 2010; Fabian et al., 1996; Gritz et al., 1993; Gritz et al., 1999; Schnoll, James, et al., 2003).

Very few studies have evaluated the association between distress and the likelihood of cessation following diagnosis and treatment in HNC. For example, Humphris and Rogers (2004) assessed a consecutive sample of 87 HNC patients on four separate occasions over a fifteen month period following treatment. Measures of psychological distress and FCR were administered at each time point. Results indicated that distress, as measured by the HADS, was significantly associated with smoking behavior at fifteen months posttreatment. Although the literature is clearly limited, such results are not surprising given evidence demonstrating that individuals with depression are more likely to smoke as well as use alcohol (e.g., Breslau, Peterson, Schultz, Chilcoat, & Andreski, 1998; Epstein, Induni, & Wilson, 2009; Hasin & Grant, 2002).

Duffy and colleagues (2002; 2007) have conducted studies of the effects of depression and smoking and drinking behavior on HRQOL in HNC. In a sample of 81 HNC patients recruited primarily from a Veterans Affairs (VA) hospital, Duffy et al. (2002) administered smoking, alcohol, and depression measures as well as the SF-36V (Kazis, 1998), a variation of the SF-36 adapted for use in veteran populations, and a condition-specific HRQOL measure. After adjustment for age and disease site and stage, regression analyses indicated that depressive symptomatology and continued smoking behavior were associated with numerous HRQOL domains, but alcohol use was not. Similarly, in a survey of nearly one thousand HNC patients from both university and VA hospitals, Duffy and her co-investigators (2007) reported that depressive symptomatology and smoking were related to global and condition-specific HRQOL, but again, alcohol use was not after adjusting for clinical and demographic characteristics. In a sample of 283 HNC patients, Potash et al. (2010) also found depressive symptomatology, but not alcohol use, to be significantly related to overall HRQOL at one year postdiagnosis in regression analyses; however, subgroup analyses indicated that problem, as opposed to social, drinkers suffered from considerably poorer HRQOL.

A few studies have begun to evaluate the influence of individual difference characteristics on continued use in this population, such as patient beliefs about quitting and patient levels of self-focused attention. For example, Christensen and colleagues (1999) measured perceived behavioral control and illness self-blame in a sample of 55 HNC patients identified as continued users of tobacco and alcohol. It was reported that the interaction between the two variables predicted continued smoking behavior; specifically, patients who attributed the cause of their cancer to previous substance use (i.e., high illness self-blame) were less likely to continue smoking only if they also believed that future, cancer-related health was a function of their own behavior (i.e., high perceived behavioral control). These variables, however, had no influence on continued drinking behavior. In another study by the same group of authors (Raichle, Christensen, Ehlers, Moran, Karnell, & Funk, 2001), individual differences in self-focused attention—operationalized as high public (vs. private) self-consciousness (Fenigstein, Scheier, & Buss, 1975)—were measured in the context of continued smoking after diagnosis of HNC. The authors hypothesized that patients with high public self-consciousness, reflecting a heightened self-awareness of one's appearance to others, would be more likely to decrease smoking behavior. Using logistic regression analyses (N = 40), the authors did indeed find that patients with high public self-consciousness were more likely to decrease this behavior, possibly because such patients were keenly aware that smoking after diagnosis is a socially unacceptable behavior. Schnoll, James, and colleagues (2003) investigated facets of the Cognitive-Social Health Information Processing model (C-SHIP; e.g., Miller & Diefenbach, 1998) including self-efficacy, fatalistic beliefs, and risk perceptions regarding continued smoking by HNC patients. These authors found that low quitting self-efficacy and low perceived risk of recurrence were associated with continued smoking, which aligns with other work in this population (Gritz et al., 1999).

A patient's motivation to quit has also been shown to be important. Gritz and colleagues (1993) conducted a relatively large (N = 186), randomized controlled trial of a provider-based smoking cessation intervention which administered a measure based on the Transtheoretical Model (Prochaska & Velicer, 1997) as part of the baseline assessment. Although the intervention effect was not significant, the authors did find that precontemplators were significantly less likely to maintain abstinence over the course of one year as compared to contemplators, much like that found in non-patient samples (Prochaska & Velicer, 1997). It is worth noting that while the evidence reviewed here may help facilitate the development of cessation interventions, some evidence suggests that HNC patients are less likely to enroll in smoking cessation interventions than other cancer populations, meaning there may also be need for the development of motivational interventions to facilitate enrollment (Schnoll et al., 2004).

Social Support

At present, relatively few studies have investigated the extent to which social support (and related interventions) may benefit HNC patients. Although many studies have demonstrated the benefits of social support in numerous cancer populations, particularly breast cancer (e.g., see Falagas, Zarkadoulia, Ioannidou, Peppas, Christodoulou, & Rafailidis, 2007; Helgeson & Cohen, 1996), HNC is unique in that certain HNC-specific domains may require more, less, and/or different supportive care at various points during treatment and recovery. For example, as reviewed above, issues regarding speech/communication and facial disfigurement are often present after treatment. Such issues may precede social isolation and depression, which may impact adherence to self-care or rehabilitation regimens (DiMatteo, Lepper, & Croghan, 2000), as well as influence tobacco and alcohol cessation, which is vitally important in this population.

Collectively, the existing evidence regarding social support in HNC is equivocal. For example, Karnell and colleagues (2007) reported that greater perceived social support measured at one year postdiagnosis was related to more favorable concurrent global and condition-specific HRQOL (as measured by the SF-36 and HNCI, respectively) in a sample of nearly 400 HNC patients. Similarly, Howren et al. (2012) found that perceived social support, measured prior to the initiation of oncological treatment, was associated with several global and HNC-specific HRQOL outcomes one year later after adjusting for several clinical and demographic variables; of note, mean HRQOL differences between those with high (versus low) perceived social support reached a level considered clinically important in several domains. In a sample of 82 ambulatory HNC patients six months removed from treatment, Katz and colleagues (2003) reported that perceived social support was associated with improved adjustment and well-being in female, but not male patients, which is consistent with other studies in the cancer literature (e.g., Manne, Taylor, Dougherty, & Kemeny, 1997). In a study of 104 posttreatment HNC patients, Birkhaug et al. (2002) found no significant association between perceived social support and HRQOL in regression analyses after adjusting for age and gender. One study that evaluated the influences of both available and received social support on depression in HNC patients (de Leeuw, de Graeff, Ros, Blijham, Hordijk, & Winnubst, 2000b) reported that available support was associated with less depressive symptomatology, but received support was associated with greater depressive symptomatology, which is consistent with extant psychological theory and evidence regarding received, as opposed to perceived, social support (e.g., see Komproe, Rijken, Ross, Winnubst, & Hart, 1997).

The impact of HNC on caregivers has also been studied, albeit to a lesser extent than in other cancer literatures. Collectively, these studies have shown that those caring for patients with HNC experience considerable distress, significant fears of recurrence, are affected by the patient's well-being (and vice versa), and are at increased risk of developing posttraumatic stress disorder, particularly during the six-month window following HNC diagnosis (see Longacre et al., 2012).⁴

For example, Baghi and colleagues (2007) surveyed 78 caregivers of patients with advanced HNC (stage III/IV) at least six months removed from the treatment phase about a range of topics including relationship conflict due to diagnosis, personal needs of the caregiver, and the perceived need for psychological care. Nearly half of caregivers reported needing psychological care as well as a desire to have contact with self-help groups. In a study of 41 patient-caregiver dyads (Verdonck-de Leeuw, Eerenstein, Van der Linden, Kuik, de Bree, & Leemans, 2007), clinical levels of psychological distress (as measured by the HADS) were identified in one-fifth of caregivers and one quarter of patients; interestingly, in half of those cases, the spouse reported clinical levels of distress although the patient did not. As one would expect, these studies suggest that HNC caregivers experience burden comparable to that seen in other cancer populations, yet there remains no interventions specifically aimed at improving HNC caregiver adjustment, despite some previous evidence of efficacy in other cancer caregivers (McMillan et al., 2006). Finally, in a study of 20 HNC patient-caregiver dyads, Offerman, Schroevers, van der Velden, de Boer, and Pruyn (2010) evaluated associations between goal disturbance, goal re-engagement, self-efficacy, and psychological distress. Although goal re-engagement, or the ability to pursue alternative goals when previous goals have become unattainable (due to a cancer diagnosis; Wrosch, Scheier, Miller, Schulz, & Carver, 2003), was significantly related to less distress in patients only, self-efficacy to achieve health outcomes was found to be significantly associated with lower levels of distress (as measured by the HADS) in both patients and caregivers.

Because HNC patients often require extensive posttreatment rehabilitation including speech therapy, physical therapy, and chronic pain management, there may exist opportunities to engage both patients and caregivers by combining brief, psychosocial interventions with such regimens. However, the type and extent of social support interventions in HNC populations requires further study (Semple, Sullivan, Dunwoody, & Kernohan, 2004). A recent study (Singer et al., 2011) reported that HNC patients preferred support services from a social worker and not a psychologist, further suggesting that support cannot be offered indiscriminately to HNC patients during treatment and recovery and highlighting the need for increased development and evaluation of interventions designed to improve psychosocial functioning in patients with HNC.

Coping

The patient`s ability to respond to and manage internal and external demands related to HNC has been studied extensively (e.g., Aarstad, Lode, Larsen, Bru, & Aarstad, 2011; Derks, de Leeuw, Hordijk, & Winnubst, 2005; Dropkin, 2001; Elani & Allison, 2008; Foxwell & Scott, 2011; Johansson, Rydén, & Finizia, 2011; List, Rutherford, Stracks, Haraf, Kies, & Vokes, 2002). Several of these studies have shown, unsurprisingly, that HNC patients adopting avoidant or other negative coping strategies such as drinking or behavioral disengagement tend to experience greater levels of distress and poorer HRQOL (Aarstad et al., 2011; Elani & Allison, 2008; Johansson et al., 2011; List et al., 2002). In a study comparing coping style differences in 78 older and 105 younger HNC patients—which may have implications for the changing patient demographic described above—Derks and colleagues (2005) reported that younger patients were more likely to use active coping strategies before and after treatment while older patients were more likely to rely on avoidant strategies.

Some studies have also begun to investigate coping processes associated with positive changes following HNC diagnosis, namely posttraumatic growth and benefit finding. For example, in a recent study of 103 newly-diagnosed HNC patients conducted by Llewellyn, Horney, and colleagues (2011), it was reported that education, social support, optimism, and active coping strategies were associated with benefit finding. Harrington, McGurk, & Llewellyn (2008) similarly found that optimism and positive reappraisal were related to benefit finding, which meshes with a recent review on this topic (Rajandram, Jenewein, McGrath, & Zwahlen, 2011). Despite these studies, however, posttraumatic growth has been studied considerably less in this population, prompting a call for more research in HNC patients (Rajandram et al., 2011).

Psychological Interventions in HNC

Although there has been some growth in the publication of psychosocial interventions in HNC, there remains a paucity of high quality, theoretically-based, randomized controlled trials examining the efficacy of such interventions, particularly compared to other cancer literatures (see Luckett, Britton, Clover, & Rankin, 2011; Semple et al., 2004). To date, most interventions have focused on issues such as smoking cessation and decreasing psychological distress, have employed varying degrees of methodological rigor, and have implemented a number of different intervention types. Several of these interventions are reviewed below (see Table 1).⁵

Given the urgent nature of tobacco and alcohol cessation in this population, and because cancer patients may be especially receptive to messages regarding health behavior change soon after diagnosis (Demark-Wahnefried, Aziz, Rowland, & Pinto, 2005), the development and evaluation of psychosocial interventions aimed at HNC patients who continue to smoke and/or drink is extremely important. In one of the few randomized, theoretically-grounded tests of a psychosocial intervention in the HNC literature, and building on their previous work described above (e.g., Schnoll, James, et al., 2003), Schnoll and colleagues (2005) conducted a study in which the impact of cognitive-behavioral therapy (CBT) for smoking cessation was compared to a health education control arm in a mixed sample of head and neck or lung cancer patients. Those randomized to the intervention arm completed four tailored counseling sessions, three of which were held by phone, targeting psychological factors associated with tobacco cessation including risk perceptions regarding the potential for cancer recurrence, self-efficacy, and distress. Those randomized to the health education (attention control) arm were presented information about the harmful effects of smoking, benefits of cessation, and provided assistance in quitting. Contrary to predictions, Schnoll et al. (2005) failed to demonstrate a significant benefit at one and three month follow-up when compared to general health education, perhaps due to the level of dosing or the active control condition, among other reasons. Although the intervention proved unsuccessful, there was evidence that the level of quit motivation predicted cessation at follow-up, which is consistent with other evidence (e.g., Gritz, et al., 1993). Of note, in a randomized trial comparing a physician-based smoking cessation intervention to usual care in a mixed sample of cancer patients (including those with HNC), Schnoll, Zhang, et al. (2003) also reported that quit motivation was an important predictor of cessation at follow-up.

Duffy et al. (2006) used a randomized design to test the effects of a tailored intervention targeting smoking, alcohol, and depression—all of which are interrelated and may be treated using similar treatment protocols (e.g., CBT)—versus an enhanced usual care control group in a sample of 184 HNC patients who screened positive for (at least) one of these issues. Patients randomized to intervention completed nine to eleven, nurse-led CBT telephone sessions and received pharmacotherapy as necessary. At six month follow-up, there was a significant difference between the intervention and control groups in smoking cessation (i.e., 47% versus 31%, p < .05); however, there was no significant difference relative to problem drinking or depression, although both groups demonstrated improvement.

Several interventions have employed various psychoeducational strategies aimed at reducing psychological distress, improving symptom management, and/or generally improving HRQOL. It bears noting that some of these studies were pilot and feasibility endeavors and, therefore, often used non-randomized designs, small samples, and/or had other methodological flaws. For example, Hammerlid, Persson, Sullivan, and Westin (1999) conducted a pair of pilot studies evaluating a psychologist-led, CBT-based group psychotherapy intervention and a provider-based psychoeducational program, respectively, in HNC patients at different points in the disease trajectory. The psychotherapy intervention required newly diagnosed HNC patients to attend several group therapy sessions held at varying intervals throughout treatment (and shortly thereafter), while the briefer, provider-based psychoeducational intervention focused on patients in the rehabilitation phase at least one year removed from diagnosis. Reductions in distress, as measured by the HADS, and improved HRQOL, as measured by the EORTC, were reported for both studies, although significance testing was not conducted. While encouraging, the lengthier group psychotherapy intervention was plagued by attrition, raising questions about its feasibility in HNC patients, particularly during the treatment phase of disease.

Other psychoeducational intervention studies have also utilized relatively brief, provider-based protocols. In a sample of nineteen HNC patients, Katz, Irish, & Devins (2004) tested an intervention (versus usual care control) which included brief, nurse-led, pre- and posttreatment supportive contact in addition to verbal and written psychoeducational information regarding HNC. Despite the small sample, significantly reduced distress and improvements in knowledge and satisfaction with appearance were reported as compared to control. Using a telehealth framework, Head and colleagues (2011) reported about the acceptance and feasibility of an intervention designed to improve HNC symptom management in patients undergoing aggressive treatment. On a daily basis throughout the course of treatment, HNC patients utilized a simple home telehealth device for computerized education and encouragement regarding illness self-management for a variety of symptoms and treatment side effects, with nurse-led consultation as needed. The intervention was found to be both acceptable and feasible, with users reporting high satisfaction, improved ability to self-manage, and an increased sense of security during the treatment phase. The complete trial results have not been reported at this time.

Interventions designed to improve coping strategies in HNC patients have also been conducted. For example, Vilela and colleagues (2006) conducted a quasi-experimental pilot and feasibility study in which patients participating in a coping skills intervention were compared to a no-contact control arm on several psychosocial outcomes including distress and HRQOL. The intervention consisted of brief, didactic information designed to improve coping with HNC through effective communication, problem-solving, goal setting and social support; psychosocial outcomes were collected at baseline and then again approximately three months later. Within-group comparisons revealed that patients receiving the intervention reported significant improvement in depression and HRQOL from baseline to follow-up, while control participants demonstrated no change. Furthermore, between-groups comparisons suggested that the intervention resulted in improved psychosocial outcomes as compared to control. Semple, Dunwoody, Kernohan, and McCaughan (2009) also conducted a quasi-experimental study of an individually-tailored, CBT-based, problem-focused psychosocial intervention in a sample of 54 posttreatment HNC patients who self-selected into the treatment and usual care control groups, respectively. Specifically, intervention patients (with the help of a therapist) identified up to three problem areas (e.g., appearance, eating/drinking behavior, psychological distress, speech issues) to be addressed over the course of the program. Between two and six in-home sessions—each lasting approximately 90 minutes—were conducted every two weeks and addressed areas of greatest concern through the use of standardized information booklets and skills training. Similar to results reported in Vilela et al. (2006), between-groups, repeated measures ANCOVA demonstrated significantly decreased distress and social impairment as well as better HRQOL in the intervention group.

Collectively, several of these interventions appear promising. However, more rigorous and thorough testing is necessary given the lack of randomized designs and a number of other threats to internal and external validity (see Luckett, Britton, Clover, & Rankin, 2011). Moreover, even the briefest, least burdensome support interventions have reported very low rates of participation in this population (e.g., Ostroff, Ross, Steinglass, Ronis-Tobin, & Singh, 2004), making further evaluation key.

Conclusions & Opportunities for Behavioral Medicine

HNC is a debilitating disease with many, often unique, physical and psychological sequelae. The process of treatment and recovery requires a multidisciplinary approach with surgeons, radiation and medical oncologists, dentists, plastic surgeons, and rehabilitation specialists all involved. The evidence reviewed here supports the need for clinical health psychologists and behavioral medicine specialists at all phases of the disease trajectory, from HNC diagnosis through treatment and recovery, a role previously advocated by others (Humphris, 2008).

As such, a number of opportunities exist for behavioral medicine research and practice. First, as evidence for the link between certain types of HNC and human papillomavirus continues to grow, research and practice must recognize the changing patient demographic, which is becoming younger and includes considerably more females (Curado & Hashibe, 2009; Marur & Forastiere, 2008). Moreover, evidence indicates that HPV-positive HNC is often more responsive to treatment and is associated with increased survival as compared to HPV-negative HNC (Marur, D'Souza, Westra, & Forastiere, 2010). This implies the need to distinguish between HNC patients with different disease etiologies (something the literature, at present, does not address) and that current research must either be replicated in HPV-positive HNC populations or that HNC patient populations will require stratification in the future. In addition, because evidence suggests that (risky) sexual contact is the primary means by which individuals with HPV-positive HNC acquire the virus (e.g., Heck et al., 2010; Smith et al., 2004), further development of behavioral interventions targeting at-risk persons is needed, particularly those designed to decrease risky sexual behavior, increase knowledge regarding acquisition of the virus, and/or increase uptake of HPV vaccinations (e.g., Cox, Cox, Sturm, & Zimet, 2010).

The complex nature of continued smoking and drinking behavior in HNC patients is especially well-suited to the expertise of researchers and practitioners in behavioral medicine. At present, more research is needed to better elucidate psychological and behavioral factors that may perpetuate smoking behavior in HNC patients, such as distress, FCR, quit motivation, causal attributions, and risk perceptions. In addition, despite the frequent co-occurrence of continued tobacco and alcohol use in HNC patients, there remains very little research on behavioral factors associated with continued alcohol use in this population (see Pinto & Trunzo, 2005). Such factors must be identified before appropriate interventions may be developed including, perhaps, multifactorial behavioral interventions designed to help patients with tobacco and alcohol cessation as well as other psychosocial issues, such as depression, which are known to influence use of these substances. Given the current state of these literatures, behavioral medicine researchers and practitioners would be wise to consult existing studies and interventions of smoking and alcohol cessation conducted in the general population, as several evidence-based approaches have proven successful and may be amenable to HNC patients (e.g., see Gunzerath, Hewitt, Li, & Warren, 2011; Schnoll & Lerman, 2003).

Currently, there are very few studies of HNC-related posttraumatic stress disorder. In three studies based upon the same longitudinal data set, Kangas and colleagues (2005a, 2005b, 2005c) reported that twenty-two percent of HNC patients met criteria for PTSD six months postdiagnosis. At one-year postdiagnosis, PTSD was present in fourteen percent of patients (Kangas, Henry, & Bryant, 2005b). These figures are consistent with a recent review of the cancer-related PTSD literature indicating that up to one-fifth of cancer patients experience PTSD at some point after a cancer diagnosis (Andrykowski & Kangas, 2010). In addition, a recent study of newly diagnosed HNC patients and their partners (Posluszny et al., 2011) reported that spouses of HNC patients were also at increased risk of developing PTSD. Collectively, these results suggest the need for further studies designed specifically to screen for and treat cancer-related PTSD in the HNC population.

There are also few studies regarding the management of pain on posttreatment adjustment and HRQOL, nor have there been any behavioral intervention studies designed to address this issue in HNC patients. The importance of pain as a patient-reported outcome cannot be overstated as at least half of HNC patients will experience moderate to severe pain and almost all will experience some degree of pain, either at presentation and/or throughout the course of treatment and recovery (Grond, Zech, Diefenbach, Radbruch, & Lehmann, 1996). One study indicated that, besides being cured and living as long as possible, being without pain was a top patient priority (Gill et al., 2011). Posttreatment pain has been linked to a host of deleterious outcomes in HNC patients including discontinued employment after treatment (Buckwalter, Karnell, Smith, Christensen, & Funk, 2007), increased psychological distress and poor long-term HRQOL (Chaplin & Morton, 1999; Funk, Karnell, & Christensen, 2012), and disease recurrence and mortality (Osthus, Aarstad, Olofsson, & Aarstad, 2011b; Scharpf, Karnell, Christensen, & Funk, 2009; Thompson, Pagedar, Karnell, & Funk, 2011). Health psychologists are in key position to assist with patient adjustment to pain at all phases of the disease trajectory through the introduction of various cognitive-behavioral techniques—several of which have proven successful in other cancer populations—designed to help the patient achieve a sense of control over the pain experience (see Breitbart, Park, & Katz, 2010).

Regarding patient-reported outcomes more generally, there is need for more widespread adoption of HRQOL assessment in clinical practice (Mehanna, 2007; Verdonck-de Leeuw, van Nieuwenhuizen, & Leemans, 2012). At present, there exists several, well-validated global and condition-specific measures that are brief and do not substantially increase patient burden, yet the incorporation of such measures in practice has been slow (Donaldson, 2004; Mehanna & Morton, 2006b). Health psychologists offer distinct expertise in the administration and interpretation of these measures, which may confer considerable benefit to both patient and clinician, whether by aiding decisions about treatment choice, improving communication between patient and provider (Velikova et al., 2004), informing patient adjustment to disease and treatment, and capturing issues related to survivorship, among other important outcomes. More recently, there has been increasing recognition that individual patient concerns are also important (as opposed to only those domains captured by standardized HRQOL assessments), resulting in the development of measures such as the Patient Concerns Inventory (Rogers, El-Sheikha, & Lowe, 2009) and Patient Generated Index (Llewellyn, McGurk, & Weinman, 2006). These measures are designed to improve the clinical encounter by delineating specific (often psychosocial) concerns of HNC patients themselves and may be used in conjunction with other standardized HRQOL assessment instruments. Additionally, screening for psychological distress is also important (NCCN, 1999) as even subclinical depression has been shown to impact HRQOL in numerous studies (e.g., Howren et al., 2010; Karnell et al., 2006) and requires attention in this population. Not only has such screening proven to be well-tolerated by HNC patients (Katz, Kopek, Waldron, Devins, & Tomlinson, 2004), but a number of acceptable (and comparable) instruments/methods currently exist (Singer et al., 2008).

The health and well-being of patient caregivers, as well as issues impacting the patient-caregiver dyad, must not go unattended either (Helgeson, 2005). Caregivers of HNC patients may experience significant burden and although this is not unique to the HNC population, as reviewed above, only a few studies have investigated HNC caregiver adjustment, fewer still have evaluated issues specific to the patient-caregiver dyad, and none have tested interventions to improve caregiver adjustment (see Longacre et al., 2012). For example, patient-caregiver dyads may experience issues regarding intimacy/sexuality related to disfigurement or distress; indeed, patient interviews and surveys have indicated that sexual issues are a primary problem in HNC survivors (Hammerlid, Bjordal, et al., 2001; Low et al., 2009; Manne & Badr, 2010). Despite this, however, research remains scant in this area.

Finally, as noted above, there are few high quality intervention trials focusing on HNC patients. Intervention trials are clearly needed, but an impediment to such trials is the relatively small number of patients available for recruitment at any one cancer center (Funk, 2008; Sherman, Hanna, & Simonton, 2005), making collaborative, multi-site studies critical despite the increased complexities and funding challenges specific to conducting such research. While the broader cancer literature may inform interventions designed for HNC-specific issues, it is important that interventional frameworks used in other cancer populations are appropriately tested and adapted for the HNC context given the unique needs of these patients. Moreover, most psychosocial interventions designed for cancer patients focus on those in active treatment or only a few months removed, neglecting long-term survivorship issues (Stanton, 2006). Because disfigurement and certain physical side effects may persist for several months and even years beyond treatment, more attention to long-term HNC survivors is warranted.

In conclusion, HNC remains understudied in the context of behavioral medicine; however, the evidence base is rapidly growing. As such, the role of health psychology and behavioral medicine in HNC is becoming clearer and ever more important. Whether as researchers or clinicians, opportunities for involvement with issues related to HNC prevention, treatment, and adjustment abound.