Taste and Smell Changes in Patients Receiving Cancer Chemotherapy: Distress, Impact on Daily Life, and Self-care Strategies

Britt-Marie Bernhardson, RN; Carol Tishelman, PhD, RN; Lars Erik Rutqvist, MD, PhD

Disclosures

Cancer Nurs. 2009;32(1):45-54. 

In This Article

Abstract and Introduction

Abstract

Few studies have described how patients receiving chemotherapy experience taste/smell changes (TSCs). Food and meal situations have important meaning beyond nutrition, so these common symptoms may affect daily lives. This study aims to investigate distress and impact on daily life from TSCs in patients receiving cancer chemotherapy, analyze reported levels of distress and impact on daily life from TSCs with regard to sociodemographic and clinical factors, and explore patients' reports of self-care strategies and communication with staff. The 340 patients reporting TSCs on a multicenter survey (n = 518) were grouped into subsets by level of TSC-related distress and impact on daily life, which served as the basis for statistical comparison. Written comments were analyzed inductively using content analysis. Nearly one-third of participating patients reported both high levels of distress and impact on daily life (high distress and high impact on daily life [HDHI]) from TSCs. The HDHI subset reported other symptoms more often than others did (P =.01) and also more often responded to open questions about distress, impact, and self-care strategies (P =.01). Taste/smell changes were not always reported to staff, even in the HDHI subset. The specific aspects of TSCs resulting in distress and impact on daily life varied greatly, affecting both psychological and somatic aspects, with little consensus and great individual differences described in self-care strategies. The variety of distress, impact, and strategies used to alleviate TSCs clarifies the importance of situational meaning.

Introduction

Taste and/or smell changes (TSCs) in patients with cancer can be related to a variety of causes, for example, progressive malignant disease, comorbidities, and treatment, including cytotoxic chemotherapy. Taste/smell changes appear as complex subjective symptoms with both physical and psychosocial dimensions.[1,2] Taste/smell changes can involve sensorial changes, originating in physical structures in the mouth (eg, damaged taste buds, mucositis, or dry mouth) or from neural pathways.[3] Taste/smell changes may also involve hedonic changes; that is, food can taste the same as usual, but that taste is no longer considered pleasant.[3] Several studies have tested "true taste" acuity,[4,5,6] but there is no consensus regarding direction of sensory thresholds or which tastes (salt, sweet, sour, or bitter) are most affected by chemotherapy.

Few studies have addressed how patients receiving chemotherapy experience TSCs or how these common symptoms affect daily life. The few existing studies indicate that TSCs can have an impact on patients' daily lives.[7,8,9] These results are not surprising since food and meal situations have important symbolic, cultural, and religious values[2] beyond nutritional aspects and thus might be expected to affect psychosocial aspects of life. It is therefore important to assess not only the frequency and intensity of TSCs but also TSC-related distress and its impact on daily life to better understand and support the patient.

As Corner and Bailey[10] point out, conceptualization of symptoms has been dominated by a biomedical model, with successes achieved in cancer pain control using powerful drugs serving as an archetype. Corner and Bailey[10] argue that this biomedical construction may have resulted in the neglect of other aspects that may be equally important for care, such as suffering, distress, and ability to function independently. Such aspects are generally better addressed in nursing models. For example, Dodd et al[11] describe symptom experiences as a process whereby an individual perceives a symptom, evaluates its meaning, and then responds. This evaluation is proposed to include an assessment of not only severity, cause, and treatability but also the effect of the symptom on the person's life.[11] Richer and Ezer[12] complement the work of Dodd et al,[11] pointing to the importance of belief and meaning in assessing an individual's symptoms. They suggest that there are 2 levels of meaning, existential and situational, with the latter defined as "the person's perception of a new event and their capacity to handle it."[12(p1111)] Richer and Ezer[12] describe how beliefs and existential meaning interact with experience and culture to shape situational meaning.

Nursing care for patients receiving cancer chemotherapy typically consists of interventions focused on preventing, minimizing, and alleviating treatment-related symptoms and problems and offering additional support to patients during the treatment phase.[10,13] For adequate and appropriate nursing care to be provided, the existence of symptoms or problems must be communicated by the patient to the staff in some manner-either through routine assessment by staff or raised as a problem by patients. Verbal communication is an intrinsic part of contact between nurses and patients, and it is well recognized that the response of healthcare staff to patient concerns is of significance[14,15] for how patients interpret their bodily signs.[13,16] It has also been postulated that both staff and patients communicate less about symptoms that are believed to lack clear treatment alternatives.[17,18] This may be particularly relevant in the case of TSCs, as our previous research indicated that patients may believe that TSCs are untreatable.[7]

In an effort to be able to optimize care for patients with TSCs, we have carried out a series of studies investigating TSCs in patients receiving cancer chemotherapy. In a multicenter survey,[19] we found that 75% of 518 patients reported experiencing TSCs. These results are well in line with the prevalence of described chemotherapy-related TSCs in the literature.[19,20,21] No substantial differences related to diagnosis or chemotherapy regimen were found. We did find that women and younger participants reported TSCs more often than others did. Participants reporting oral problems, nausea, appetite loss, and depressed mood also more frequently reported TSCs, although based on these data, we concluded that TSCs appeared to be more related to sociodemographic features than to clinical factors. This survey allowed us to recognize TSCs as a major symptom during chemotherapy but afforded little insight into its implications for patients.

The aims of the study presented here, based on the subset of the survey of participants reported TSCs, are therefore to (1) describe self-reported TSC-related distress and impact on daily life among patients receiving cancer treatment, (2) compare patients' reported levels of distress and impact on daily life from TSC with regard to sociodemographic characteristics and clinical factors, and (3) describe patient reports of self-care strategies, including communication with healthcare staff in relation to levels of distress and impact on daily life.

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