Current Consensus in QOL Issues

1. The severity of physiologic measures often correlates minimally with QOL.

QOL correlates with patient satisfaction.

Patient satisfaction influences treatment compliance.

2. QOL studies must be formatted as prospective and long-term.

3. QOL considerations respect the patient's wishes; patients who are empowered to participate in their treatment planning and rehabilitation generally manifest higher QOL.

4. Any type of treatment for HNC is associated with negative QOL impact. Functional and QOL compromise is not exclusively associated with surgical regimens, but also accompanies nonsurgical treatments (radical radiotherapy, chemoradiotherapy).

5. QOL considerations include many more aspects than functional status alone.

6. Negative functional consequences are more common in patient-reported outcome surveys than are reported in the medical literature.

7. Because the population at large of patients with HNSCC have both cancer-related and general health/comorbidity issues, QOL outcomes should be assessed with both general health measures and HNC-specific measures.

8. Patients with cancer are often unwilling to sacrifice any length of life for a shorter life of putatively better quality. Therefore, the relevance of time/trade-off methods of QOL analysis using surrogate models needs reevaluation.

9. There is lack of correlation between physician and patient ratings of QOL and emotional well-being. Physicians do not accurately predict what is important to patients in the physical, functional, emotional, and QOL realms. Many articles show both that physicians consider many treatment defects more mutilating than patients do and that patients consider many long-term sequelae of treatment more negative on QOL than physicians do.®

10. The elitist assumption of health care professionals that patients cannot evaluate and assess the QOL impact of their cancer treatments seems incorrect.

QOL, quality of life; HNC, head and neck cancer; HNSCC, head and neck squamous cell carcinoma.

^Dirksen SR. Theoretical modeling to predict subjective well-being. West J Nurs Res 1990;12:629.

tumor-related factors. The patient's nonphysical status was not a priority. The literature largely consisted of retrospective cancer treatment reports of oncologic results. During the 1960s, some articles appeared on rehabilitating surgically imposed deficits, and attention focused on certain postoperative conditions, such as the "oral cripple." The literature on QOL for HNC patients was largely nonexistent, with the exception of one contribution, which was subsequently widely misquoted.30 A holistic approach to the patient was considered the domain of general medical practitioners. For the most part, this approach failed to enter the realm of specialty training, where the focus is on technical advances. Topics such as communicating with patients,31 psychosocial considerations in patient management, and disease prevention/behavior modification,32 were largely absent from medical school curricula.

Starting in the 1980s, changes in the focus of surgical oncology were motivated by patient demands for less mutilating treatment options (e.g., lumpectomy vs radical mastectomy). Over time, this led to a function-preserving emphasis (in selected patients) such as sphincter-preserving operations for gastrointestinal and genitourinary cancers, limb-preserving sarcoma operations, and nerve-sparing prostatectomy. This functional approach to solid tumors has led to a minimally invasive strategy in general surgical oncology, as exemplified by the increased use of laparoscopic techniques for cancer resection. However, such a modus operandi has largely failed to penetrate HNC surgery, with the exception of more widespread use of selective neck dissection and transoral laser excision of laryngeal tumors by some practitioners. In HNC surgical oncology, the popularity of free-flap reconstruction during the 1990s led to the philosophy that there is no longer a need to "scrimp and save" because large organ territories can be resected and adequately reconstructed. The functional validity of these reconstructive techniques has largely been assumed, rather than documented in the literature, however. Although an organ preservation strategy has not developed in the area of HNC surgical oncology for advanced tumors, this is the focus of strategies using various combinations of chemo- and radiotherapy as the initial treatment in patients with advanced (and now less advanced) HNC, in an effort to avoid initial surgery altogether—presumably a response to widespread aversion to the traditional radical, mutilating operations for advanced HNC. The organ preservation strategies of the past 10 to 15 years, synonymous with using nonsurgical combinations of chemo- and radiotherapy in the initial treatment of HNC patients, have become (surprisingly, based on the lack of evidence-based support in their favor), a community standard of care in many parts of the United States.33 The multimodality management of HNC remains controversial in many aspects, which are beyond the scope of this chapter, but which have been reviewed in the recent literature.15 For patients who present with advanced cancer that is difficult to cure, maintaining QOL assumes greater importance.

Consistent with this new emphasis in head and neck oncology, QOL studies are now appearing in addition to the omnipresent retrospective cancer treatment reports in the HNC literature. The "state of the art" of HNC QOL is currently to report functional outcomes related to various treatments (only a small component of global QOL/well-being), as well as validating a variety of QOL instruments that assess the general health as well as the disease-specific status of these patients.

There appears to be competition between academic institutions in generating better QOL instruments for HNC patients, and there are a plethora of these.18'19'34-38' 67 Concomitantly, there appears to be little interest in verifying the validity of someone else's instrument. Most published reports are still retrospective in nature, resulting in a large number of studies on small numbers of patients, further complicated by the many stages and natural histories of HNC in different sites. However, there now appears to be a realization that the proper format for QOL data collection is prospective. There is a need to select one good instrument and to apply it uniformly to the HNC population in the form of national prospective studies, in order to produce the type of data that are necessary to generate valid practice guidelines.

In the context of documenting function and relating it to various treatments, the tendency is to generate very sophisticated technical and multivariate analysis such as objective measures of vocal function and to use these data to demonstrate the advantage of one treatment over another. By now, the reader of this chapter should be able to deduce that such hightech quantitative assessments of function may have relatively little relationship to a patient's perceived QOL, although these measures may have intrinsic interest from a research viewpoint.

A question that arises from recent publications is what to do with anti-intuitive or contradictory results. For example, one study from the University of Chicago19 found that dry mouth, the most frequent and severe residual effect of the chemoradiotherapy strategy under study, was not associated with the outcome of diet, depression, or QOL. Certainly most treatment managers would expect dry mouth, as well as ongoing pain and fatigue, to be major factors affecting QOL in irradiated HNC patients. Would, or should, such a contradictory result from a single study reverse the impression of years of unsolicited patient testimonials to the contrary? Such anachronistic results highlight the recognized fact that patients under stress have internal adaptive processes that often maintain their QOL at an acceptable level in ways that defy measurement by external criteria and that tend to even out QOL comparisons between apparently very divergent treatments. Despite the adverse effects of therapy, patients often express overall satisfaction with their outcomes, although there are wide variations in individual responses. For some patients, QOL scores may actually increase after treatment because QOL has been compromised by the presence of cancer before treatment. Most patients can accommodate to virtually any treatment-related deficit if it is not too divergent from what they were led to expect, highlighting the importance of generating realistic expectations through patient and family education. If the same anachronistic result is demonstrated repeatedly in the literature, its credibility will increase, leading to change in the perception of the significance of a particular QOL parameter and to refocusing on other areas which have not been considered as important theretofore.

For example, in the HNC QOL literature, the primacy of voice quality has been the major parameter assessed because doctors have considered it most important. Preservation of the larynx has been a primary QOL endpoint to the virtual exclusion of other considerations until recently, although the importance of this factor and the negative impact of surgery in the initial treatment plan have largely been assumed, rather than documented in the literature. For example, functional voice results from the VA study were not published until 7 years39 after the landmark 1991 study conducted by the Veterans Affairs Laryngeal Cancer Study Group,40 which launched the nonsurgical organ preservation strategy for patients with advanced HNC. During the interim, a number of articles have documented the fact that an individual HNC patient's overall QOL is not dependent on a particular therapeutic strategy. Treatments as diverse as total laryngectomy, hemilaryngectomy, and radiotherapy for larynx cancer may not differ significantly when QOL assessment is performed,37 although such findings are undoubtedly counterintuitive to many treatment managers who typically think of surgery as the treatment for HNC most associated with mutilating consequences. It has been widely assumed that postradiation voices are normal, although clinical and experimental evidence now suggests that many patients experience a decrease in voice quality and overall QOL after radiotherapy.34'41 Such results have also been found in other areas of solid tumor surgical oncology; for example, some sarcoma studies have failed to prove that QOL is higher in patients who have had limb salvage than in those who undergo amputation.22,42,43

The fact that such findings are unexpected may relate to the influence of a seminal study published in 198130 (that has been widely misinterpreted) in demonstrating the preference of HNC patients for radiotherapy rather than surgery for laryngeal cancer. That study was a utility analysis (time/trade-off technique) in which 37 healthy volunteers (12 firefighters and 25 executives) were asked to choose treatment options based on perceived changes in QOL after treatment with a laryngectomy. The investigators estimated that 20% of subjects would choose a treatment to preserve their larynx, even if it meant potentially shorter survival, related to the perceived decrement in QOL pursuant to laryngectomy. The use of surrogates to respond to questionnaires concerning cancer treatment impact, which they themselves have not experienced, is not considered appropriate by many, and cannot be used as the basis for formulating QOL outcome statements, which by definition concern patient satisfaction.34,41 Stewart et al.28 argued, "The decisions on health status and QOL made by healthy volunteers should not be assumed to coincide with the values and decision of patients with laryngeal cancer, who usually have decreased functional status and QOL at the time of decision making." In a pilot study of patients with HNC from New Zealand, a surprisingly high proportion of patients indicated that they would not sacrifice 1 day of their present existence in exchange for a better QOL.44 According to Morton,45 "Many patients treated may have disability or dysfunction which a clinician regards as unacceptable, but which may be quite acceptable to the patient who is grateful to be alive and participating."

Two points have now been substantiated by replication in multiple HNC QOL studies (Table 19-2): (1) health care professionals have little ability to predict what is important to patients undergoing various treatments, and (2) the patient's perception of factors affecting QOL often differs significantly from the physician's perspective. In one retrospective study comparing the relative importance of various QOL dimensions as ranked by patients undergoing laryngectomy and by health care professionals, ranking differed significantly between the two groups. Health care professionals ranked impaired communication, self-image, and self-esteem as the most important, whereas patients ranked physical consequences and interference with social activities as the two most important QOL dimensions. To patients, communication was only third and self-image/self-esteem were seventh.46 These differences may relate to physicians projecting their own values onto patients and responding to QOL questionnaires based on what they consider important. Voice is, admittedly, essential to psychological identity, and having a normal voice is very important to a practicing physician. However, many HNC patients, both male and female, especially in the rural population, tend to be verbally circumspect. To such patients, the loss of a voice that they normally do not use much anyway may not be very significant. In fact, there is considerable evidence that patients who have undergone a total laryngectomy are more bothered by the presence of a stoma with draining secretions than by the loss of voice, which can usually be adequately rehabilitated.46-48 One study of postlaryngectomy patients using a tracheoesophageal prosthesis (TEP) reported an improvement in speech intelligibility over the preoperative voice.49

A recent report28 demonstrated that the health status of 80 veterans who had undergone treatment for laryngeal cancer (surveyed in 1996), was affected by factors other than voice handicap. Unexpectedly, many patients who had TEP after laryngectomy showed less voice handicap than did patients treated with radiotherapy. Patients who had undergone a laryngectomy actually reported better overall health on a single-item scale than did patients treated with radiotherapy. Pretreatment prediction by experienced speech pathologists was a poor predictor of eventual voice outcome. Additional evidence showed that the "perception of changes in functional status and QOL by health professionals is a poor predictor of the changes reported by patients with laryngeal cancer themselves." These investigators concluded that their data "refute the common perception that sparing the larynx during treatment will result in improvements in verbal communication," noting that "much of the difference in QOL was caused by other [unmeasured] factors." They cited swallowing and airway protection as other relevant issues when considering outcomes after larynx-sparing treatment. Similarly, a long-term single assessment study27 from the VA trial40 showed similar speech scores in the group of patients who received chemo- and radiotherapy as those who received total laryngectomy. The former group had better QOL scores, but this was related more to freedom from pain, better emotional well-being, and lower levels of depression than to the preservation of the speech function. Such a single-point, long-term study may be biased because it assesses only long-term survivors who respond to questionnaires, a selected subgroup of patients who have had considerable time to adjust to any treatment-imposed deficits. Such a study would be more useful had comparison points at earlier stages in the treatment sequence been available, and if sequential data had been accumulated in a prospective, longitudinal format.

Some have commented that it is invalid to compare voice handicap and QOL outcomes after different treatments because (1) many studies are retrospective, (2) there is a lack of female patients from Veteran's Administration hospitals, and (3) treatment and voice rehabilitation methods are almost never assigned in a randomized manner, so the possibility for selection bias exists. These objections again emphasize the need for prospective QOL studies. Interestingly, in one QOL study of patients who had total laryngectomy, a preoperative counseling visit by a laryn-gectomee was the only significant factor determining later QOL/satisfaction.48 It has been pointed out that identifying the coping strategies of patients who have been through the experience and incorporating them in pretreatment counseling might be useful, especially for patients with poor coping skills.45

The importance of factors other than voice, such as problems with diet/swallowing and residual pain,50 have emerged as significant QOL factors in multivariate HNC QOL studies. A study from the University of Chicago showed that pain relief correlates with better physical functioning, mood, and sense of well-being. In that study, 23% of patients were depressed, and this was associated with past problems related to alcohol abuse.19 In other QOL studies, about 22% of patient populations screen positive for major depression when tested51-53

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