Survey of caregiver needs after their loved ones completed cancer treatment.
Authors: Young Lauren , Odzer Jamie , Fenton Mary Anne Anne , Lopresti Mary Lorraine , Duffy Christine M. , Higel-Mcgovern Camille , Begnoche Megan H. , Dizon Don S. 
Published: June 2021

e24048

Background: Many people with cancer have medical and psycho-social-sexual sequelae following completion of treatment, which can extend well in to the future and impact both caregivers and families. In response to the unmet needs of people with cancer, the Survivorship Care Plan (SCP) was proposed as a roadmap for patients starting from diagnosis and treatment and preparing them for future care, both inside and beyond oncology-specific issues. However, the SCP does not address needs of families or caregivers, nor was it meant to. We sought to identify the needs of caregivers to determine whether a tailored SCP for the caregiver (SCP-C) should be considered. Methods: People who were at least 6 months out from the end of treatment were invited to participate, along with their designated caregiver. Volunteers with cancer completed the National Comprehensive Cancer Network Survivorship Assessment Survey at the time of consent. Caregivers participated in a semi-structured interview using an adaptation of the Veterans Affairs Caregiver Self-Assessment worksheet, supplemented by open-ended questions. Descriptive statistics were used; categorical variables were compared using chi-square or Fisher’s Exact Test. Results: 24 dyads (patient and caregiver pairs) were enrolled. Median age for patients was 70 (60.7 to 73) and caregivers was 66 (52.2-72). Time since end of treatment was 32 months (9.7 to 69.6) for patients and 32.8 months (8.3 to 51.3) for caregivers. The majority of patient respondents were female (87.5%) and caregiver respondents were male (70.8%); the majority had early-stage disease (63%). About 65% of caregivers were spouses and 74% of them lived with the person with cancer. 75% of caregivers spent 6 months to 3 years as a caregiver. They reported multiple types of support to patients, including help with ADLs, transportation, medical management and emotional support, regardless of time elapsed since their loved one’s diagnosis. Intimate support was significantly less among married couples less than 3 years out from diagnosis (23 vs 73%, respectively, p < .05). 100% of caregivers reported that they understood the diagnosis and follow up plan. However, almost 20% felt they did not fully understand potential side effects of treatment. Caregivers coped well in all domains with the exception of maintaining mental and physical health; compared to those out 3 years or less, those out for longer were more likely to report doing well (90% vs 45%, p < 0.5). Conclusions: Although caregivers reported high satisfaction with cancer-specific information, a large minority reported issues related to the side effects of treatment. In addition, while caregivers did well after completing treatment, those still within the first 3 years of the index diagnosis reported more issues with physical and mental health. These data point toward targeted resources that could be provided specific in an SCP-C.