Dataset Information

Population-based utility scores for HPV infection and cervical squamous cell carcinoma among Australian Indigenous women.

ABSTRACT:

Objective

Working in partnership with Indigenous communities in South Australia, we aimed to develop, pilot test and estimate utility scores for health states relating to cervical cancer screening, precancer, and invasive cervical cancer and precancer/cancer treatment among Indigenous women.

Methods

Development and pilot testing of hypothetical cervical cancer health states, specifically through the lens of being an Indigenous Australian woman, was done with an Indigenous Reference Group in conjunction with five female Indigenous community members. Six health states were developed. These included: (1) Screened: cytology normal; (2) human papillomaviruses (HPV) positive with cytology normal; (3) low grade cytology (LSIL);(4) high grade cytology (HSIL); (5) early stage cervical cancer and; (6) later stage cervical cancer. Utility scores were calculated using a two-stage standard gamble approach among a large cohort of Indigenous Australian women taking part in a broader study involving oral HPV infection. The mean and standard deviation (SD) of the rank, percentage of respondents with a utility = 1 (perfect health) and utility score of each health state was summarised. Mean (SD) and medians and inter-quartile range (IQR) over 12 months and lifetime duration were calculated. Potential differences by age and residential location were assessed using the Wilcox Sum Rank test.

Results

Data was obtained from 513 Indigenous women aged 19+ years. Mean utility scores were higher for the four non-cancer health states than for invasive cervical cancer states (p-values <0.05). Lower mean utility scores were observed for late stage cervical cancer, with 0.69 at 12 months and 0.70 for lifetime duration (Intra-class correlation coefficients = 0.425). Higher utility scores were observed for the four non-cancer health states among non-metropolitan participants (ranged from 0.93 to 0.98) compared with metropolitan participants (ranged from 0.86 to 0.93) (p-values<0.05).

Conclusion

Among a large cohort of Indigenous Australian women, the reduction in quality of life (which utilities reflect) was perceived to be greater with increasing severity of cervical cancer health states. There were differences observed by geographic location, with positive cervical screening and precursor cancer-related quality of life being much higher among non-metropolitan-dwelling participants. These utility values, from one of the largest such studies ever performed in any population will be uniquely able to inform modelled evaluations of the benefits and costs of cervical cancer prevention interventions in Indigenous women.

SUBMITTER: Ju X

PROVIDER: S-EPMC8298063 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:Aboriginal and Torres Strait Islander (collectively, Indigenous Australian) women experience a higher burden of cervical cancer than other women. The National Cervical Screening Program (NCSP) is failing to meet the needs of Indigenous Australian women, resulting in many women not regularly participating in cervical screening. However, one third of Indigenous Australian women do participate in cervical screening. The reasons that some women in this population commence and continue to screen remain unheard but could provide insights to support women who currently do not participate. We aimed to describe Indigenous Australian women's experiences and views of participation in cervical screening by yarning (a culturally-appropriate interview technique) with 50 Indigenous Australian women aged 25-70 years who had completed cervical screening in the past five years, recruited via Primary Health Care Centres (PHCCs) from three jurisdictions. Aboriginal or Torres Strait Islander women researchers conducted the interviews. Thematic analysis identified six themes: screening as a means of staying strong and in control; overcoming fears, shame, and negative experiences of screening; needing to talk openly about screening; the value of trusting relationships with screening providers; logistical barriers; and overcoming privacy concerns for women employed at PHCCs. Despite describing screening as shameful, invasive, and uncomfortable, women perceived it as a way of staying healthy and exerting control over their health. This ultimately supported their participation and a sense of empowerment. Women valued open discussion about screening and strong relationships with health providers. We identified logistical barriers and specific barriers faced by women employed at PHCCs. This study is strengthened by a research approach that centred Indigenous Australian women's voices. Understanding the experiences of Indigenous Australian women who participate in screening will help screening providers support women to start and continue to screen regularly. Recommendations for practice are provided.

Project description:RationaleIndigenous peoples carry a disproportionate burden of infectious diseases and cancers and are over-represented among the socially disadvantaged of most countries. Human papillomavirus (HPV) is a risk factor and causative agent of cervical, oropharyngeal and other cancers. Recent literature shows evidence of Indigenous populations being at increased risk of HPV infections and its associated cancers.ObjectiveThis is a qualitative systematic review. The objective of this study was to explore the experiences and barriers Indigenous women face in relation to HPV awareness, knowledge and cervical screening, in order to better understand factors that may mitigate against or facilitate prevention efforts for HPV infection and associated cancers.MethodsTwo investigators independently searched MEDLINE, PubMed, SCOPUS and Web of Science databases (for articles published from inception until 30 June 2020) using a prespecified search strategy to identify qualitative studies on narratives of Indigenous women regarding HPV infection awareness, knowledge and cervical screening, across all geographic and income-level settings. Using a 'meta-study' approach, a social ecological model of cervical screening, infection and associated cancer prevention among Indigenous populations was formulated.ResultsFive core themes were identified and formulated within the social ecological model; intrapersonal factors, interpersonal factors, institutional/organisational factors, sociocultural/community factors and public policy. These collectively formed the proposed social ecological model of HPV infection awareness and cervical cancer prevention among Indigenous women. This model has been synthesised by taking into account personal stories of Indigenous women and healthcare workers, thus offering a more nuanced, organised, structured and culturally sensitive approach to policy translation.ConclusionThe social ecological model of HPV infection awareness and cervical cancer prevention among Indigenous women offers a holistic and practical approach for Indigenous health policy makers. It clearly addresses the high risk of Indigenous populations at a global level in experience of both HPV infection and HPV-related cancers.Prospero registration numberCRD42020207643.

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