Informational Needs of Head and Neck Cancer Patients

Abstract

The patient journey with head and neck cancer (HNC) is particularly challenging given the physical and functional impact of the cancer and treatment. The ability to perform activities of daily living can be severely compromised and have a profound impact on psychosocial well-being. These complex and long-lasting effects can affect patient quality of life for months to years and the literature shows that information for HNC patients is often insufficient. This observational cross-sectional study utilized survey methodology to investigate the informational needs of HNC patients and the preferred modalities for delivery. This was done to inform the development of resources for HNC patients. Four hundred fifty surveys were analyzed. The median age was 61 years and 58% of the cohort was born in Canada. Most were Caucasian (72%), Chinese being the next largest ethnicity (12%). A third had less than high school education and most had cancer of the oral cavity (28%) and were in long-term follow-up (41%). Comparison of the percentage of items to which a patient responded "very important" across the six domains shows variation of importance by domain (overall mixed effects regression model p < 0.0001). Additionally, each domain was compared to the medical domain and all had significantly lower mean scores (all p < 0.0001) with the medical domain scoring highest (mean score 64.6). The top preferred education modalities were teaching with a healthcare professional and pamphlets. This study highlights the type of information that HNC patients want and the format they wish to receive it in. The design provides a comprehensive way to consult with patients toward building education that responds to their specific needs.

Informational Needs of Patients with Cancer: A Qualitative Content Analysis

“…In the present study, informational needs of cancer patients were awareness of the nature of the disease, Its management, and different cancer treatments other than chemical treatments. According to previous studies, the most important informational needs of patients with head, neck, oral, pharyngeal, gynecologic, and gastrointestinal cancer, related to physical, medical, emotional, practical, social, and spiritual domains; respectively (Papadakos et al, 2017;Giuliani et al, 2016;Manne et al, 2016;Papadakos et al, 2012;Papadakos et al, 2015;Khoshnood et al, 2018a). On the other hand, some factors related to ways of providing information to patients.…”

“…In this regard, Mulcare et al, (2011) whereas, a patient who exhibited a cognitively avoidant adjustment style would have low needs for disease orientated information. In addition, Papadakos et al, (2017) investigated the most highly rated informational needs in cancer patients. These needs were information about side effects prevention and management, the possible side effects induced by cancer treatment methods, and treatment of cancer.…”

“…Lack of knowledge about the disease makes patient afraid of the disease recurrence, feel worried about death; moreover, it increases stress and affects negatively the patients' and their families lives (Papadakos et al, 2017, Khoshnood et al, 2018c. The need for information is one of the most important standards of care and support in cancer patients (Husson et al, 2013).…”

Propelling a New Era of Patient Education into Practice—Cancer Care Post–COVID-19

“…Another benefit is that patients receive education materials that are endorsed directly by their health care providers. The literature shows that patients prefer and trust information that is given to them by their health care providers over information they find themselves, 20 and the Digital Education Prescription facilitates this exchange. In addition, the digital patient education ecosystem houses standardized course content for consistent teaching across professions; all of the materials included adhere to patient education best practices, including adult learning principles, plain language, and plain design, which can support health literacy.…”

Explore the self-care needs in patients with cancer; a qualitative content analysis

“…When patients receive accurate information about their illness and its prognosis, they can take realistic actions about self-care and disease management (27). Papadakos (2017), Giuliani et al (2016), and Manne (2016) highlight the need for information in patients with cancer about physical care, medical information, and information to meet the emotional, social and spiritual needs (28)(29)(30). A systematic review by Moghaddam et al…”