Patterns of, and barriers to supportive care needs assessment and provision for Australian women with gynecological cancer and their caregivers: a mixed-methods study of clinical practice

Abstract

ObjectivesTo document the current clinical practice in 2017 for assessment of supportive care needs and provision of supportive care to women with gynecological cancer and their caregivers in Australia, and to identify the main enablers and barriers to care provision.MethodsA total of 64 health professionals who care for Australian women with gynecological cancer responded to an electronic survey which explored their use of needs assessment, service-level processes and protocols for support service provision, and identified enablers and barriers to provision of care to both patients and caregivers. Eight respondents underwent an additional in-depth interview to elaborate on enablers, barriers, and gaps in the provision of supportive care.ResultsMostly, needs assessment for women and caregivers was part of current practice but done without validated tools or a checklist. Only 30% of respondents reported having documented referral pathways. Most respondents simply recorded a plan for meeting needs within the patients’ medical record (63% for patients; 46% for caregivers) rather than using a formalized care plan (15% for patients; 6% for caregivers). The interviewees’ comments supported survey results that having sufficient time to discuss issues was both the most important enabling factor and the greatest barrier to successful supportive care provision. The interviewees further discussed variations in needs based on age, cultural background, and phases within the cancer care continuum, and that best practice supportive care should involve a multidisciplinary team and customizable protocols.Significance of resultsThere is much room for improvement in the assessment of needs and provision of supportive care to women with gynecological cancer and their caregivers. Approaches to optimize use of consultation time (e.g., needs assessment tools and referral protocols) are necessary. Flexibility in the form and mode of delivery of support may be required to meet diverse personal preferences and incorporate caregivers.

Screening for distress in women with gynaecological cancer: Adaptation of the distress thermometer for gynaecological oncology patients

“…A survey of NCCN member institutions reported only one-quarter undertook routine distress screening for all cancer patients and around one-third reporting some selective screening of specific groups of cancer patients (Donovan & Jacobsen, 2013). These results are consistent with Australian data which suggest that only 30% of services have formal referral pathways for distressed patients (Beesley et al, 2019).…”

“…and specificity testing of this tool compared with gold standard measures (e.g., anxiety and depression); (2) establish the clinical cut-off scores appropriate for the intended population; and (3) further test the utility and validity of the concerns used in the tool for all gynaecological cancers types, as not all were sampled in this current study (e.g., women with vulvar cancer). Moreover, as adherence to routine screening recommendations remains problematic(Beesley et al, 2019;Cancer Australia, 2017;Donovan & Jacobsen, 2013), a greater understanding of how and why services undertake routine screening is needed (e.g., what works, for whom, under what circumstances, and why).…”

Dietitian encounters after treatment for ovarian cancer

“…51,52 It is not known what proportion of these women received a referral to dietetic services; however, a recent survey of clinicians indicates that needs assessment and planning for dietary care is not routine within the gynaecological cancer setting. 53 Barriers to supportive care provision identified by clinicians in that survey included limited appointment time, lack of protocols to assess supportive care needs and complex referral pathways. 53 Together with our findings, this suggests that there is scope within the clinical setting to improve access to dietetic services after treatment for ovarian cancer, particularly for women with multiple, ongoing symptoms that may affect nutritional intake and those with poorer diet quality pre-diagnosis.…”

“…53 Barriers to supportive care provision identified by clinicians in that survey included limited appointment time, lack of protocols to assess supportive care needs and complex referral pathways. 53 Together with our findings, this suggests that there is scope within the clinical setting to improve access to dietetic services after treatment for ovarian cancer, particularly for women with multiple, ongoing symptoms that may affect nutritional intake and those with poorer diet quality pre-diagnosis.…”

“…Multiple nutrition impact symptoms are recognised as a clinical indicator of malnutrition risk in the cancer care setting, requiring further nutrition assessment 51,52 . It is not known what proportion of these women received a referral to dietetic services; however, a recent survey of clinicians indicates that needs assessment and planning for dietary care is not routine within the gynaecological cancer setting 53 . Barriers to supportive care provision identified by clinicians in that survey included limited appointment time, lack of protocols to assess supportive care needs and complex referral pathways 53 .…”