Are National Cancer Control Indicators for patient experiences being met in regional and remote Australia? A cross-sectional study of cancer survivors who travelled for treatment

Abstract

ObjectiveTo examine the health services experience of patients with cancer from regional and remote Australia using the Australian National Cancer Control Indicators (NCCI) guidelines as an assessment framework.DesignCross-sectional.SettingQueensland non-for-profit cancer accommodation lodges.ParticipantsParticipants were patients with cancer who travelled for treatment from rural and remote Queensland to major urban centres (n=518; age mean=64.6, SD=11.18).Outcome measuresAssessments included NCCI patient indicators, quality of life (QoL), psychological distress and unmet supportive care needs.ResultsThe frequency at which NCCI indicators were met ranged from 37.5% for receiving an assessment and care plan to 97.3% for understanding explanations about diagnosis. Geographical considerations did not impact patient experience, whereas middle school educated participants were more likely than those with senior-level education or higher to receive an assessment and care plan (OR=1.90, 95% CI 1.23 to 2.91) and to report having their views on treatment taken into account (OR=2.22, 95% CI 1.49 to 3.33). Patients with breast or prostate cancer reported better communication and patient involvement and information and services provision (r=p<0.001) compared with those with skin and head and neck cancer. When compared with information and service provision, communication and patient involvement showed stronger positive associations with QoL (z=2.03, p=0.042), psychosocial (z=2.05, p=0.040) and patient care (z=2.00, p=0.046) outcomes.ConclusionThe patient care experience varies across the NCCI indicators by sociodemographic and clinical factors that likely reflect healthcare system biases. Perceptions about communication and involvement appear most critical for optimal outcomes and should be a priority action area for cancer control.

Information needs and preferences among rural cancer survivors in Queensland, Australia: a qualitative examination

“…Health systems are known to already face resource and time barriers to developing and implementing cancer survivorship care, and this may be particularly problematic for cancer survivors living in rural areas 41 . Thus, communication and collaboration between primary and secondary care is crucial to improving the delivery of holistic survivorship care information, particularly in rural areas 23,42 . In addition, more research needs to be done to determine how community services and non‐government organisations can be integrated into rural cancer care delivery to adequately meet the holistic needs of cancer survivors and achieve equitable outcomes 43…”

“…Ethical approval was granted by the University Human Research Ethics Committee (H17REA152). Participants were recruited through a larger longitudinal research project, with recruitment methods described elsewhere 23 . A sub‐sample of participants enrolled in the larger project who had indicated consent to be contacted about future research studies were approached and invited to participate.…”

LGBTQI Inclusive Cancer Care: A Discourse Analytic Study of Health Care Professional, Patient and Carer Perspectives

“…HCPs who took up the subject position of inclusive and reflective practitioner demonstrated LGBTQI cultural competence and cultural humility, creating a place of cultural safety ( 33 – 35 ) for LGBTQI patients and their carers, through a range of inclusive verbal and non-verbal strategies ( 1 , 14 , 45 ). Inclusive and reflective HCPs regarded LGBTQI patients as potentially vulnerable and needing nuanced care, following best practice models of person-centered care tailored to individual patient needs ( 66 ). They recognized the impact of societal discrimination and the legacy of trauma in health care, including difficulties related to disclosure of SOGI status ( 67 ) and violations to bodily autonomy for some intersex patients ( 68 ), drawing on an affirmative construction of LGBTQI health ( 69 ).…”

“…Egalitarian practitioners who use the ‘same yardstick’ to address the concerns of their patients are implicitly signaling a cis-heteronormative subject position, which does not acknowledge the unique needs of their LGBTQI patients ( 1 , 14 ). This is not following guidelines for equitable person-centered care ( 66 ), and serves to render LGBTQI patients and their carers invisible ( 84 ). Cis-heteronormative assumptions on the part of oncology HCPs and absence of opportunities for SOGI disclosure are associated with LGBTQI patient dissatisfaction with healthcare ( 4 , 12 ) and anxiety about disclosure of SOGI status ( 4 , 12 – 14 ), and this was confirmed by patients and carers in the present study.…”

The quality of life of regional and remote cancer caregivers in Australia

“…Dyads were recruited as part of a larger project examining the experiences of regional and remote cancer patients in Australia who must travel to receive treatment in major cities. Details of the larger project are provided elsewhere (Dunn et al, 2021; Goodwin et al, 2021). In summary, 402 (49.6%) of cancer patients participating in the larger project nominated a caregiver and provided their contact details to the research team along with permission to contact them.…”