The increasing public health burden of melanoma warrants evaluation of quality-of-life outcomes and the instruments most commonly used to measure quality of life in patients with melanoma. A review of the published literature focusing on quality-of-life outcomes in melanoma patients was performed to appraise the instruments used for assessment and the significant findings. In general, generic instruments continue to be most commonly used in the evaluation of quality of life despite the lack of responsiveness to changes in quality of life in subsets of patients. Cancer-specific and melanoma-specific instruments may be more suited for longitudinal clinical assessments.
Quality of life (QOL) has increasingly been recognized as an important patient-reported outcome measure that can facilitate patient-doctor communication, reveal symptoms that should be addressed, and influence medical decision making. QOL is a multidimensional construct encompassing physical, functional, emotional, and social and family well-being. Physical well-being, in this context, refers to symptoms related to disease (eg, pain, nausea, and fatigue) and the side effects of treatment. Functional well-being refers to an individual’s ability to perform activities of daily living (eg, walking, bathing, and dressing oneself) and perform one’s societal role. Emotional well-being refers to coping ability and reflects the experience of feelings ranging from enjoyment to distress. Social and family well-being reflects the quality of relationships with family and friends as well as the degree of a measure of social interaction. This article focuses on health-related QOL, which is a component of overall QOL. To simplify terminology, QOL is used to mean health-related QOL throughout the rest of this article.
Longitudinal assessment of QOL can provide essential information on the impact of a disease and its treatment. In several studies, QOL has been demonstrated to be an independent predictor of survival and response to therapy in patients with cancer. In a study on patients with melanoma, baseline QOL was a predictor of survival in patients with advanced melanoma who received chemotherapy. In a study on patients with metastatic melanoma, patients who were optimistic about their expected survival or who minimized the impact of cancer on their daily lives were found to live longer. Evaluation of QOL outcomes may also facilitate clinical decision making when differences between the survival expectations associated with the various treatment options are anticipated to be modest.
Many QOL instruments exist and have been used in patients with cancer. These instruments are generally classified using 3 categories: generic, disease specific, and symptom or event specific. Most QOL instruments include items or questions inquiring about both symptoms and function. Despite an increase in the incidence of melanoma, studies examining QOL in patients with melanoma are uncommon in the literature. This review examines the body of literature pertaining to the assessment of QOL in patients with melanoma regarding the various instruments used and the melanoma-specific findings. An overview of QOL instruments is provided, and a systematic literature review on QOL in patients with melanoma is reported.
QOL instruments
Generic Instruments
Generic QOL instruments are general health measures used in a wide variety of clinical settings and diseases, which allow for comparison of scores across a variety of different illnesses. One of the most widely used generic QOL instruments is the Medical Outcome Study Short-Form Health Survey (SF-36), which is reviewed elsewhere in this issue. The SF-36 is the most commonly administered generic QOL instrument and has been used in more than 1000 studies to date. As a result, typical SF-36 scores have been established for a variety of medical conditions and permit valuable comparisons of QOL across diseases. There are no cancer-specific items, and in the application of the SF-36 to melanoma several interesting findings have been elucidated, which are detailed subsequently in the systematic review.
Disease-Specific Instruments
Disease-specific instruments include items that focus on specific symptoms frequently associated with particular illnesses; these instruments can be very specific (eg, for melanoma) or more general (eg, cancer specific or skin disease specific).
Cancer-specific instruments
Several cancer-specific instruments have been shown to be more sensitive and responsive measures of QOL than generic QOL instruments in patients with cancer; several cancer-specific instruments have been developed for various anatomic sites and types of malignancy. The Functional Assessment of Cancer Therapy Scale—General (FACT-G) and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) are 2 of the most widely used cancer-specific QOL measures. The FACT-G is a 33-item questionnaire that was validated in a 4-phase trial involving patients and oncologists. This instrument evaluates physical, functional, social, and emotional well-being as well as the patient-doctor relationship, and takes an average of 5 minutes to complete. Scores obtained from the FACT-G can vary according to tumor stage. The EORTC-QLQ-C30 includes items pertaining to general, physical, and psychological health, and the ability to complete normal activities of daily living. The first generation of this instrument was developed in 1987 and modified in 1993 with a reduction in the number of items from 36 to 30; the EORTC-QLQ-C30 has a reported completion time of 10 to 12 minutes.
Melanoma-specific instruments
Patients with cancer experience disease-related issues that often affect their QOL, similar to patients with most other chronic conditions, which questions the applicability of generic QOL measures for patients with cancer in clinical trials or investigative settings, because generic instruments may not be responsive to QOL changes specific to cancer. In response to this problem, cancer site–specific or tumor-specific QOL instruments have been developed and are widely used for most malignancies, including breast cancer, colon cancer, and lung cancer.
An identified lack of melanoma-specific QOL instruments led to the development of melanoma-based modules for both the FACT-G and the EORTC-QLQ-C30. These instruments have been validated in patients with melanoma and have been shown to be responsive and sensitive to change. The melanoma module for the FACT-G has been developed and validated as an independent tool and an add-on to the FACT-G; when the FACT-G and the melanoma module are administered together, they constitute the FACT-M. The FACT-M has been shown to be responsive and sensitive in patients with melanoma at all stages of disease. The melanoma module consists of 16 items related to melanoma and an additional 8 items pertaining to the surgical treatment of melanoma. These items fall within the domains of physical, social, and emotional well-being. The melanoma module of the EORTC-QLQ-C30 is designed for patients only with advanced (stage IV) melanoma. This module consists of 13 items and evaluates disease-specific symptoms related to disease treatment and progression ( Table 1 ).
| Instrument | Description | Cronbach Alpha | Test-Retest Reliability | Melanoma-Specific Findings |
|---|---|---|---|---|
| FACT-G | 33 items Designed for all types of malignancies | 0.89 | 0.92 | Treatment influences QOL Fatigue is the most common symptom during treatment |
| EORTC-QLQ-C30 | 30 items 5 functional scales: physical, role, cognitive, social, and emotional 3 symptom scales: fatigue, pain, nausea and vomiting | 0.54–0.86 | NA | Decreases in QOL correlate with increases in physical symptoms Survey not sensitive to variations in QOL based on different course of treatment Amount of supportive care received correlates with QOL Complete lymph node dissection associated with lower QOL than sentinel lymph node biopsy Emotional functioning, fatigue and insomnia, and overall global health status decline during diagnostic process and treatment |
Skin disease–specific instruments
Several instruments have been developed for the assessment of QOL in patients with a variety of dermatologic conditions. These include Skindex and the Dermatology Life Quality Index (DLQI) ( Table 2 ). Skindex was created to capture skin-related emotional, symptom, and functional issues, and has been applied to quantify the differences in QOL between immediately before and after dermatologic surgery. Skindex has multiple versions that range from 16 to 61 items. The 29-item Skindex has been used in patients with melanoma and other skin malignancies more often than in patients with other skin conditions. The DLQI has 10 items. In addition to being shorter than the Skindex, the DLQI has a family version that is used to assess the effect of the dermatologic condition of interest on other family members. This measure has most commonly been used in patients with nonmetastatic skin cancer or other benign dermatologic diseases, such as eczema or psoriasis.
| Instrument | Description | Cronbach Alpha | Test-Retest Reliability | Melanoma-Specific Findings |
|---|---|---|---|---|
| Skindex | 61 items; also shorter versions with 36, 29, and 17 items 3 domains: emotional, social, and appearance | 0.76–0.86 | 0.68–0.90 | Reported outcomes influenced by cytokine patterns |
| DLQI | 10 items Impact of chronic skin diseases Family version available that measures impact of the skin disease on patient’s family | 0.92 | 0.95 | Follow-up schedule does not affect QOL |
Symptom Assessment Tools
A wide variety of symptom assessment tools have been developed; these are also called state-specific QOL measures. Symptom assessment tools have been designed to evaluate the event-specific impact of a symptom on a patient’s reported QOL. Symptom assessment instruments are beneficial in identifying specific symptoms rather than assessing overall QOL. In some circumstances, identifying the most relevant symptom to be assessed may be challenging, and certain symptom assessment tools may not indicate distress when a patient is experiencing other adverse symptoms. Symptom assessments may only be valuable in certain clinical settings or used in combination with additional instruments; instrument choice is critical in accurately assessing QOL.
Two of the most widely used cancer-related symptom assessment tools are the MD Anderson Symptom Inventory (MDASI) and the Memorial Symptom Assessment Scale (MSAC). The MDASI is a 19-item measure that evaluates symptoms, such as pain, fatigue, lack of appetite, and other symptoms that interfere with activities of daily living. The MSAC evaluates physical and psychological symptoms and has been shown to be a predictor of survival. Although the use of these 2 instruments has not been documented in patients with melanoma, they are widely used as symptom assessment tools in other types of cancer.
Symptom assessment tools that have been used in published studies of patients with melanoma include the Horowitz Impact of Event Scale, the Hospital Anxiety and Depression Scale, Ways of Coping Checklist, Brief Symptom Inventory, and the Rotterdam Symptom Checklist ( Table 3 ). The Horowitz Impact of Event Scale measures the postevent stress response to clinically significant events, such as a cancer diagnosis. The Hospital Anxiety and Depression Scale quantifies inpatient anxiety or depression in nonpalliative cancer settings. The Ways of Coping Checklist is designed to evaluate various methods commonly used for coping with a significant illness. The Brief Symptom Inventory was designed to evaluate the psychological symptom status of patients in both psychiatric and more general medical settings. Unlike other symptom inventories, the Brief Symptom Inventory is designed to measure several dimensions of psychological distress and may be a valuable tool for use in diagnostic settings. The Rotterdam Symptom Checklist is a 38-item checklist that assesses psychological measures, activities of daily living, and primary symptoms of illness. This checklist has been proved to be valid in multiple oncologic settings.
| Instrument | Description | Cronbach Alpha | Test-Retest Reliability | Melanoma-Specific Findings |
|---|---|---|---|---|
| Horowitz Impact of Event Scale | 15 items Assesses posttraumatic stress related to significant events such as a cancer diagnosis | 0.86 | 0.87 | Diagnosis and progression shown to produce acute and long-term posttraumatic response in patients and families |
| Hospital Anxiety and Depression Scale | 14 items Assesses anxiety and depression | 0.86–0.89 | 0.86–0.91 | Higher anxiety than depression reported for hospitalized cancer-related surgery Correlates with out-of-hospital QOL Performs best in nonpalliative cancer settings |
| Ways of Coping Checklist | 66 items 8 scales (confrontive coping, distancing, self-control, seeking social support, accepting responsibility, escape avoidance, problem solving, positive reappraisal) Measures coping and if coping mechanisms increase distress | NA | NA | High active coping and low depressive coping were predictors of perceived support for patients in regular melanoma follow-up Social support was the strongest health-enhancing factor Women had more psychological symptoms and coping methods |
| Brief Symptom Inventory | 53 items Measures emotional distress | 0.75–0.89 | 0.90 | Significant levels of distress noted with significant variability in findings (29% reported moderate to high levels) |
| Rotterdam Symptom Checklist | 38 items 3 sections: psychological, medical, and activities of daily living | 0.89 | NA | Psychological or physical well-being were not associated with melanoma survival Most common symptoms included worrying, fatigue, lethargy, and muscle soreness |
Methods
To assess the current body of published literature specifically related to the assessment of QOL in patients with melanoma, a systematic literature search was performed. Several databases (MEDLINE, Current Contents [which includes databases including Clinical Medicine, Social and Behavioral Sciences, Health, and Psychosocial Instruments], Cancerlit, and the Cochrane Library) were examined for articles published from 1966 through 2011 using the following search terms: quality of life, melanoma, psychosocial, well-being, and health-related quality of life. The bibliographies in identified articles were also reviewed to identify other potentially relevant articles. Articles were selected from the following criteria: (1) written in English, (2) at least 20% of patients in the study population had a diagnosis of melanoma, and (3) measures of QOL were the primary or secondary outcomes of the study. All types of studies were considered, including clinical trials (randomized or nonrandomized), prospective cohort studies, and cross-sectional studies. Publications were excluded if study results could not be obtained from the abstract or the article. The QOL instruments used in the study were classified as generic, disease specific (ie, cancer, melanoma, or skin disease), or symptom assessment. The findings related to melanoma were abstracted and summarized.
Methods
To assess the current body of published literature specifically related to the assessment of QOL in patients with melanoma, a systematic literature search was performed. Several databases (MEDLINE, Current Contents [which includes databases including Clinical Medicine, Social and Behavioral Sciences, Health, and Psychosocial Instruments], Cancerlit, and the Cochrane Library) were examined for articles published from 1966 through 2011 using the following search terms: quality of life, melanoma, psychosocial, well-being, and health-related quality of life. The bibliographies in identified articles were also reviewed to identify other potentially relevant articles. Articles were selected from the following criteria: (1) written in English, (2) at least 20% of patients in the study population had a diagnosis of melanoma, and (3) measures of QOL were the primary or secondary outcomes of the study. All types of studies were considered, including clinical trials (randomized or nonrandomized), prospective cohort studies, and cross-sectional studies. Publications were excluded if study results could not be obtained from the abstract or the article. The QOL instruments used in the study were classified as generic, disease specific (ie, cancer, melanoma, or skin disease), or symptom assessment. The findings related to melanoma were abstracted and summarized.
Related posts:
Health-Related Quality of Life in Dermatology: Introduction and Overview
Overview of Health Status Quality-of-Life Measures
Melasma Quality of Life Measures
Quality-of-Life Instruments: Evaluation of the Impact of Psoriasis on Patients
Clinical Meaning in Skin-specific Quality of Life Instruments: A Comparison of the Dermatology Life Quality Index and Skindex Banding Systems
Future Directions in Dermatology Quality of Life Measures
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