Abstract
Background
Literacy in the head and neck cancer patient has been understudied. Health literacy (HL) is “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health care decisions.” Limited HL skills reduce access to health care. We surveyed our patients who underwent total laryngectomy (TL) to evaluate their HL.
Methods
Patients who had undergone TL at Grady Hospital (Atlanta, GA), an inner-city hospital, between 1988 and 1992 were identified. Sociodemographics, general health quality of life, HL, and alaryngeal voice assessment were performed.
Results
Thirty patients were eligible but 14 could not be located, 4 refused, and 4 were deceased or too ill to participate. More than one third of the remaining patients had severely inadequate HL scores.
Conclusion
Patients who underwent TL have a high incidence of becoming lost in the system as well as having inadequate health care literacy. Health literacy may be important when considering TL.
1
Introduction
The choice of treatment for a patient with advanced laryngeal cancer is predicated on many factors. Tumor biology, performance status, and patient compliance are considered extensively in multidisciplinary tumor boards. Generally, clinicians focus on delivery of the most efficacious care consistent with the patient’s health and resources. Head and neck cancer patients are inordinately challenged by low socioeconomic status and their attendant problems. Literacy, as a problem for patients who underwent total laryngectomy (TL), has been understudied.
The National Assessment of Adult Literacy defines literacy as “using printed and written information to function in society, to achieve one’s goals, and to develop one’s knowledge and potential .” According to the National Assessment of Adult Literacy, in 2003, 14% of adult Americans had below basic prose literacy skills. In a survey of North Carolina otolaryngologists and radiation oncologists in active practice in who treat head and neck cancer patients, only 26% were able to correctly identify the prevalence of illiteracy in the US adult population .
More specific to our patients, the National Institutes of Health defined health literacy as the “degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health care decisions .” Not only must patients read the information on the bottle of medicine, but also they need to understand the directions. Within the Grady Medical System, 35% of the patients were documented to have either inadequate or marginal health literacy .
Patients with limited literacy have reduced access to health care and literacy-limited patients who have undergone TL would theoretically be even more severely challenged. Because of our concern with the long-term functional status of our patients who underwent TL, we reviewed the sociodemographics, health status, and functional health literacy of a head and neck cancer population who had undergone TL and remained without evidence of disease.
2
Materials and methods
Using the Grady Memorial Hospital Tumor Registry, patients undergoing TL for malignant disease between January 1, 1988, and December 31, 2002, were identified. Patients were invited to participate in an institutional review board-approved study to assess their functional status. After informed consent was obtained, face-to-face interviews were conducted using validated, structured questionnaires as described below. Voice assessment was performed once the questionnaires were completed.
Sociodemographics were assessed as outlined in Table 1 .
| Unique identifier |
| Sex |
| Age |
| At diagnosis |
| Current |
| Race/ethnicity |
| Education level (years of schooling) |
| Vocation (if any) |
| Employed currently? |
| T-stage |
| N-stage |
| Date of diagnosis |
| Date of local disease recurrence (if any) |
| Date of surgery |
| Radiation—yes/no |
| Chemotherapy—yes/no |
| Household income |
General health related quality of life was assessed using the Medical Outcomes Study SF-12 . Medical Outcomes Study SF-12 is designed as a self-administered 12-item questionnaire that quantifies general health related quality of life on 8 multiitem scales (physical function, role limitations due to physical health problems, bodily pain, general health perceptions, emotional well-being, role limitations due to emotional problems, social function, and energy-fatigue).
Functional health literacy was assessed with a Short Test of Functional Health Literacy in Adults (S-TOFHLA) , which can be performed in 12 minutes or less. In an effort to more accurately assess the ability of patients to follow directions, the S-TOFHLA uses actual materials that patients might encounter in a typical clinic. There are 2 parts to the test. The reading comprehension section omits every fifth to seventh word in a passage and 4 multiple choice options are provided . The numeracy section attempts to measure whether a patient can perform various number-related health care tasks such as comprehending prescription directions, monitoring serum glucose levels, and keeping clinic appointments. Correct responses for each question in the reading and numeracy sections receive one point, and incorrect responses do not receive any points. Data suggest that the S-TOFHLA has good reliability and validity compared to the full TOFHLA .
Alayrngeal voice assessment was performed using the Voice Handicap Index and the American Speech-Language-Hearing Association Intelligibility Scale .
2
Materials and methods
Using the Grady Memorial Hospital Tumor Registry, patients undergoing TL for malignant disease between January 1, 1988, and December 31, 2002, were identified. Patients were invited to participate in an institutional review board-approved study to assess their functional status. After informed consent was obtained, face-to-face interviews were conducted using validated, structured questionnaires as described below. Voice assessment was performed once the questionnaires were completed.
Sociodemographics were assessed as outlined in Table 1 .
