This article explores the psychosocial and economic implications of cancer and their relevance to the clinician. After a general overview of the topic, the authors focus on aspects of particular importance to the dental professional, including the psychosocial and economic implications of the oral complications of cancer and its therapy, head and neck cancers, and special issues among children with cancer and cancer survivors.
From the moment of diagnosis, the presence of cancer has a profound psychologic impact on the qualify of life (QOL) of patients and their families, on family and social relationships, and on role functioning ( Fig. 1 ). These effects are magnified by therapy, which consumes the intellectual and emotional energy of patients and their families and leads to side effects that further hamper role functioning and QOL. With regard to the economic impact, the mere diagnosis of cancer reduces employability and insurability, and treatment and its side effects consume personal and family wealth and reduce productivity. Economic challenges reduce QOL and strain family relationships while altered role functioning and poor QOL reduce employability and productivity.
Intensive and often prolonged cancer treatments may strain already limited health care resources such as hospital beds, personnel, and blood products for the management of anemia and thrombocytopenia. This “opportunity cost” of cancer also applies to health care finances. Assuming that a finite amount of money is available for health care in any society, the expenditure on cancer care reduces the opportunity to spend money on other health care priorities. Additionally, society, particularly employers, must address the loss of productivity of cancer patients and their employed family members who often must miss work for caregiving. Finally, the years of life lost to cancer mortality affect both economic (eg, job-related productivity) and social aspects of society (eg, benefits from volunteer activities, parenting).
This article explores the psychosocial and economic implications of cancer and their relevance to the clinician. After a general overview of the topic, we focus on aspects of particular importance to the dental professional, including the psychosocial and economic implications of oral complications of cancer and its therapy and of head and neck cancers, and special issues among children with cancer and cancer survivors.
Overview of the psychosocial and economic impact of cancer
Psychosocial impact on quality of life, family relationships, functional status, and social functioning
QOL is a multidimensional construct including mental and emotional well-being, physical limitations, the availability of appropriate treatment, family and social relationships, and finances. The dimensions are intertwined, and each is important to cancer patients for maximal functioning. QOL is affected by the type and extent of cancer and by the chronic concerns of patients that their cancer will recur or progress .
QOL is a frequent topic of concern among those who care for chronically ill patients. Quantifying QOL is important because a less-than-optimal QOL can severely compromise an individual’s ability to handle stressful situations and follow treatment or supportive care schedules . Historically, QOL was regarded as subjective and difficult to quantify, and the measure of a patient’s well-being was thought to extend beyond laboratory values. Later, tools were designed to quantify the QOL of cancer patients, and further research found that QOL was a stronger predictor of survival than other clinical measures such as performance status .
Not surprisingly, QOL scores are inversely related to cancer stage. Patients with more advanced disease tend to have lower (poorer) QOL scores. In a large trial, patients with local or stage 1 disease reported a QOL score of 89.7 compared with 80.7 among patients with stage 4 or advanced disease . Physical and functional well-being were the primary contributors to the lower scores among patients with advanced disease, whereas social and emotional well-being were similar across all cancer stages.
Several instruments are used to assess QOL, either by a composite appraisal encompassing many dimensions or by singling out one element, such as anxiety or depression. Tools designed for use in patients with chronic disease, such as the Hospital Anxiety and Depression Scale (HADS) and the Utrecht Coping List , also provide a reliable assessment of the mental well-being and coping skills of a cancer patient. Many studies have evaluated QOL in patients involved in clinical trials by use of a comprehensive measure such as the European Organization for the Research and Treatment of Cancer (EORTC) Quality-of-Life questionnaire . The Functional Assessment of Cancer Therapy (FACT/FACIT) instrument is often used during and after treatment . Both tools are widely used with modules for specific cancers that evaluate distinct symptoms such as fatigue.
These instruments identify which dimensions detract from QOL but do not identify specific unmet needs . To assess the latter, several tools have been adapted, such as the Kingston Needs Assessment–Cancer Questionnaire and the Supportive Needs of Cancer Survivors (SNCS) .
Table 1 provides an overview of a variety of tools. The King’s College of the University of London Patients’ Needs Assessment Tools in Cancer Care: Principles & Practice July 2005 provides comprehensive descriptions of additional instruments . These tools are important because the perceptions of unmet needs of patients and their caregivers may be quite different. In a recent study by Snyder and colleagues , patients reported that needs assessment instruments would be most useful in assisting their caregivers in providing the assistance they most wanted. In contrast, caregivers thought the composite tools including symptom information would be most useful. Interestingly, caregivers ranked pain control as the patients’ highest priority while patients ranked pain control 15th among their top 20 concerns, with their most important concern being obtaining information about possible treatment options and self-help measures.
| Instrument | Origin | Length: focus of instrument |
|---|---|---|
| Functional Assessment of Cancer Therapy (FACT), now named Functional Assessment of Chronic Illness Therapy (FACIT) | Cella (1993) Renamed in 1997 |
|
| COPE Questionnaire | Carver (1989) Renamed in 1997 | 14 items: ability and strategies for coping with cancer |
| Profile of Mood States (POMS), originally named Psychiatric Outpatient Mood Scales | McNair (1964) Revised by McNair (1971) | 65 scales (emotional distress in six areas): tension-anxiety, depression-dejection, anger-hostility, fatigue, vigor, confusion-bewilderment, total mood disturbance |
| Impact of Events Scale (IES) | Horowitz (1979) | 15 items: stress; intrusive symptoms (thoughts, feelings, nightmares); avoidance symptoms (avoidance of feelings, situations, ideas, lack of responsiveness) |
| European Organization for the Research and Treatment of Cancer (EORTC) Quality-of-Life | Study Group, Aaronson (1993) |
|
| Supportive Care Needs Survey (SCNS) | Bonevski and the Supportive Care Review Group (2000) | 59 items: cancer patients’ needs and degree to which needs have been met |
| Hospital Anxiety and Depression Scale (HADS) | Zigmond and Snaith (1983) | 10 items: screening tool for anxiety and depression |
| Social Support List Interactions (SSL-I) Short Form (SSL12-I) | van Sonderen (1991) Dutch Kempen (1995) English |
|
| Utrecht Coping List | Schreurs (1993) | 17 items: problem-solving, seeking support, coping behavior; active, avoidance, palliative and religious |
| Cancer Locus of Control Scale (CLOC) | Pruyn et al (1988) | 13 items: measures of internal control over disease cause and course (7 items); religious control (3 items); family, health care providers, friends control (3 items) |
| Center for Epidemiologic Studies-Depression (CES-D) | Radloff (1977) | 20 items: self-reported depression on scale 0 (fewer) to 60 (more) symptoms of depression |
| Kingston Needs Assessment-Cancer | Davidson (2003) | 52 items: adequacy of supportive services for symptom control, information needs, support service needs, overall experience at the facility, coordination of care |
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