Navigation needs in peritoneal surface malignancy as perceived by patients, caregivers and providers

Abstract

Background

Oncology navigation programs offer information and assistance to patients diagnosed with cancer and have evolved significantly along disease-specific care pathways. However, there is limited information on how to prioritize navigation services to meet the unique and complex needs of patients with peritoneal surface malignancies (PSMs). To define the navigation needs of PSM patients, we conducted a survey-based study to quantify the relative importance of various cancer-related stressors as perceived by patients, caregivers, and providers.

Methods

A questionnaire was administered to PSM patients or caregivers and providers involved in the care of PSM patients, and the assessed measures of disease or treatment-related stress were compared among subgroups consisting of patients and caregivers vs. providers.

Results

Of the 72 PSM patients and caregivers surveyed, 93.1 % identified stressors related to receiving treatment to be somewhat or extremely challenging. Relative to patients/caregivers, providers tended to significantly over-prioritize the navigation domains of family care, transportation, long-distance travel, financial, insurance, work-related, and legal stress. Our survey data illustrates gaps between the experience of stressors among PSM patients/caregivers and the perceptions of providers.

Conclusions

PSM programs should align resources with the navigation needs as experienced by patients and caregivers, while recognizing that providers tend to emphasize logistical considerations over cancer-related emotional distress. PSM-specific navigation pathways could improve the experience and satisfaction level of patients undergoing treatment for this complex condition.

Synopsis

The authors report results of a survey provided to peritoneal surface malignancy patients, caregivers and providers. This analysis illustrates gaps between how patients and caregivers experience navigation needs and how providers perceive those needs.