Development and usability testing of a web-based self-management intervention for oral cancer survivors and their family caregivers

Abstract

Oral cancer (OC) survivors experience debilitating side effects that affect their quality of life (QOL) and that of their caregivers. This study aimed to develop and evaluate a dyadic, web-based intervention to improve survivor self-management and survivor/caregiver QOL. A qualitative needs assessment (semi-structured interviews) with 13 OC survivors and 12 caregivers was conducted to discern information and support needs as well as preferences regarding website features and tools. Results using Grounded Theory analysis showed that OC survivors and caregivers: 1) want and need practical advice about managing side effects; 2) want to reach out to other survivors/caregivers for information and support; and, 3) have both overlapping and unique needs and preferences regarding website features. Usability testing (N=6 survivors; 5 caregivers) uncovered problems with the intuitiveness, navigation, and design of the website that were subsequently addressed. Users rated the website favorably on the dimensions of attractiveness, controllability, efficiency, intuitiveness, and learnability, and gave it a total usability score of 80/100. Overall, this study demonstrates that OC survivors and caregivers are interested in using an online program to improve QOL, and that providing tailored website content and features based on the person's role as survivor or caregiver is important in this population.

Patient and caregiver perspectives on decision support for symptom and quality of life management during cancer treatment: Implications for eHealth

“…Previous studies have focused on examining the usability or efficacy of eHealth systems. 26,27 In our study, patients and caregivers identified components for DS helpful. Advances in health information technology and increased use of patient portals make it possible to integrate patient preferences for DS.…”

“…This is the first study to our knowledge that explored patient perspectives about which components of DS would be desirable for enhancing communication with clinicians. Previous studies have focused on examining the usability or efficacy of eHealth systems . In our study, patients and caregivers identified components for DS through the use of eHealth and non‐eHealth systems.…”

Barriers to active self‐management following treatment for head and neck cancer: Survivors' perspectives

“…Additionally, following our findings in relation to financial resources, intervention components relating to financial management [eg,] may be beneficial for HNC survivors. Because of potential issues of accessibility to services, eHealth self‐management interventions may also be of particular value to this population [eg] . Finally, routine screening for QoL needs (eg, using the Patient Concerns Inventory) may help to identify those who need to be targeted with structured supported self‐management programmes.…”

The EU and cancer research

“…Through this turmoil the EJCC will continue to place a high value on pan-European (and, indeed, international) Oral cancer is linked to tobacco and alcohol consumption; it is a condition for which we do not routinely screen in most western countries-despite the existence of identifiable pre-cancerous lesions, there is little evidence to date that screening can reduce mortality from this condition. Nevertheless, awareness of early symptoms is important, as is information on self-management strategies for oral cancer survivors, who often live with significant morbidity including facial disfigurement; Badr et al (2016) demonstrate some interesting findings through use of a web-based strategy targeting both oral cancer patients and their family caregivers. Finally, take a look at Hamilton and Thomas's (2016) paper on the experiences of patients with lymphoedema-a condition which can be associated with significant morbidity and distress in cancer patients.…”

“…Nevertheless, awareness of early symptoms is important, as is information on self‐management strategies for oral cancer survivors, who often live with significant morbidity including facial disfigurement; Badr et al. () demonstrate some interesting findings through use of a web‐based strategy targeting both oral cancer patients and their family caregivers. Finally, take a look at Hamilton and Thomas's () paper on the experiences of patients with lymphoedema—a condition which can be associated with significant morbidity and distress in cancer patients.…”