The Supportive Care and Health Literacy Needs of Cancer Patients Attending a Private Cancer Centre

Friday, 20 July 2018: 2:50 PM

Leanne Monterosso, PhD, RN
Centre for Nursing and Midwifery Research, St. John of God Murdoch Hospital/University of Notre Dame Australia/Edith Cowan University, Murdoch, Australia
Gail Ross-Adjie, PhD, RN
School of Nursing and Midwifery, The University of Notre Dame Fremantle, Fremantle, 6959, Australia

Purpose: To explore the unmet supportive care and health literacy needs of patients at different stages of anticancer therapy in a private oncology centre. The aim was to gain a detailed understanding of patient-reported unmet supportive care and health literacy needs to inform the future development of a modular, online supportive care resource to optimise health and wellbeing during and after anticancer therapy.

Methods: Co designed cross-sectional sample of adult treatment-naïve cancer patients from a large private tertiary Cancer Centre. Data for 120 patients (four cohorts) was obtained by self-report questionnaires to measure supportive care needs (SCNS SF 34), anxiety and depression (HADS), quality of life (EORTC QoL) and financial toxicity (COS-FACIT). Semi-structured interviews were also conducted (n=5 per cohort). Cohort 1: newly diagnosed anticancer therapy naïve; Cohort 2: completed chemotherapy or three months’ post commencement of another anticancer agent; Cohort 3: three months’ post chemotherapy completion or 6 months’ post commencement of another anticancer agent; Cohort 4: six months’ post chemotherapy completion or 9 months’ post commencement of another anticancer agent.

Results: The study sample was relatively young (m=60.5 years) and reflected the four most incident cancers (breast n=38/32%; bowel n=23/19%; lung n=23/19%; melanoma n=12/10%). Whilst all cohorts demonstrated some degree of need across all domains, cohort 2 demonstrated higher ‘borderline’ anxiety and depression scores; lower global QoL (M=59.7), physical (M=74.2), role functioning (M=59.4), emotional (M=73.1), cognitive (M=68.3) and social (M=65.6) subscale QoL scores; higher psychological, health system and information, physical and daily living supportive care needs. All cohorts demonstrated financial toxicity/concerns. Qualitative findings included: uncertainty about the future, concern about the effect of the cancer diagnosis and treatments on the family, the importance of having a support person during initial visits with the oncologist and for treatment, targeted education and information according to treatment stage rather than overwhelming amounts administered pre-treatment, nurses play a central role in delivering information at the right time, receiving information about side effects before treatment enabled participants to feel more reassured when treatment commenced, acceptance of the need to modify exercise and diet whilst receiving treatment and nursing staff were noted to be especially helpful in advising patients on side effects of treatment.

Conclusion: Unmet needs are prevalent among individuals at all stages of the cancer experience from diagnosis through to the survivorship phases. These findings will be used to optimise wellness, prevent or address unmet needs in a new tertiary Cancer Centre through development of modular high quality online vimeos. The first vimeo has been developed for newly diagnosed cancer patients and is accessible online globally. Consumers (patients and carers) and caregivers (nurses, oncologists, medical students, social worker, pastoral pracitioner, patient care assistants and volunteers) were involved in the development of the script and filming.