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Impact of pelvic floor dysfunction in Aboriginal and Torres Strait Islander women attending an urban Aboriginal medical service

Abstract Background Pelvic floor dysfunction causes high‐level disease burden, with Aboriginal and Torres Strait Islander women less likely to have access to best management for these issues due to multiple sociocultural barriers. There is limited data on the impact of pelvic floor dysfunction in this specific population. Aims To explore the impact of pelvic floor dysfunction on Aboriginal and Torres Strait Islander women attending an urban Aboriginal medical service, considering barriers and facilitators for care, and the services that are desired to address these conditions. Methods This is a mixed methods project utilising the validated Pelvic Floor Impact Questionnaire 7 in combination with qualitative data from semi‐structured interviews. Quantitative data were analysed using SPSS Version 24 and analysis included the use of means, SD and Fisher's exact test for comparison. Interview transcriptions were coded into initial themes using thematic analysis and a theoretical approach was used to capture common patterned responses. Results The majority of women reported urinary incontinence. Higher scores on the urinary impact questions were significantly associated with comorbid risk factors of chronic cough and obesity. Salient themes from interviews included help‐seeking behaviours, embarrassment and normalisation of the condition. Women desired access to a pelvic floor physiotherapist, and preferred a female doctor and a consistent care provider. Conclusion Pelvic floor disorders cause high disease burden for Aboriginal women across a broad age range with associated comorbid risk factors frequently occurring. This study suggests service improvement and care delivery strategies that may improve long‐term outcomes for Aboriginal women with pelvic floor conditions.


INTRODUCTION
Pelvic floor disorders are common and often disabling for women and include urinary and bowel dysfunction such as incontinence, vaginal prolapse, recurrent urinary tract infections and sexual dysfunction. 1,2 There is limited research on Aboriginal* women's pelvic floor dysfunction (PFD), with incontinence a key area to be addressed within Aboriginal health.
Evidence gaps exist about the prevalence, burden of disease and effects of associated risk factors 3 in this population; however, a higher prevalence of urinary incontinence in younger Aboriginal women aged 19-22 5 and people aged 45 and above 6 has previously been reported. It is recognised there is a wide research and funding gap in regard to effective interventions for pelvic floor conditions for Aboriginal women, in addition to a lack of recognition of the impact of these conditions in current management guidelines. 4 The known risk factors for female PFD in general include chronic cough, hypertension, diabetes, urogenital or abdominal surgeries, obesity, pregnancy and smoking. 1 Aboriginal people experience these risk factors and co-morbidities at increased rates and disproportionately to non-Aboriginal people. 5 Among Aboriginal patients, under-reporting and undertreatment of incontinence is likely to occur, and in addition women are under-referred by primary care providers to specialist services. 6 In the rural setting contributing factors may include financial difficulties, limited culturally appropriate services and at times limited English. 6 In this setting outreach services are the most common form of specialist service and these can have issues with barriers to access, including covering large distances and lack of transport, 7 sustainability and resourcing. 8 A review showed that many Aboriginal health services do not provide incontinence services, with a proportion believing that continence issues are not a problem in their community. 9 Other barriers to care identified for Aboriginal women include a preference to speak to female clinicians 9 due to PFD being a topic of 'shame' and perceived as a private matter. Culturally specific resources have described the sacredness and private nature of genitals for Aboriginal women in central and northern remote communities and the cultural conflicts that may occur in the setting of women's urogenital and gynaecological health care. 10 Further, older Aboriginal women may be fearful of being removed from their Country for treatment or placed in nursing home care due to the admission of incontinence. 7 The aims of this mixed methods study were to explore the burden of PFD for Aboriginal women, the frequency of comorbid risk factors and barriers to care. The intention was to consider the need for existing service expansion which at the time included onsite a specialist gynaecologist clinic and access to urodynamics.

Community consultation and core principles
The project was designed with core ethical principles of spirit and integrity, responsibility, respect, cultural continuity, equity and reciprocity, as outlined in the National Health and Medical Research Council guidelines. 11 Community consultation was undertaken with the chief executive officer, practice manager and Aboriginal health worker of the participating Aboriginal medical service. The consultation informed the project design, expected benefit for the organisation, formulation of interview questions and agreement regarding data ownership and usage.
The investigators conducted general practitioner (GP) information sessions prior to recruitment, outlining best practice primary care management of PFD informed by current guidelines 12,13 and site-specific referral pathway options, which included an onsite specialist gynaecology clinic. It was expected that the practice GPs would undertake appropriate examination and management of women identifying PFD, and in addition the co-investigator who runs the specialist gynaecologist clinic would continue care in the case of referral.
At the interview stage the chief investigator, an Aboriginal female doctor, undertook the interviews. This allowed cultural continuity by use of a same gender and concordant race interviewer to ameliorate issues of embarrassment and discussion of a sensitive topic.
At the conclusion of the project the data underwent a preliminary analysis and this was presented back to the service with key findings and recommendations formulated.

Participant recruitment and methodology
This mixed methods study recruited women who attended an urban Aboriginal medical service in New South Wales. This service provides primary care but also women-specific clinics such as an antenatal clinic and specialist gynaecology clinic. The inclusion criteria were identification as Aboriginal and/or Torres Strait Islander aged between 18-80 and attendance at the service. Clinical staff were asked to screen all women at their appointment for any type of PFD by utilising three screening questions: 1. Do you feel a lump or a bulge? 2. Do you ever accidently leak urine, even a few drops?
3. Do you ever have to rush to go to the toilet?
The screening questions for recruitment were based on questions recommended for use by GPs in Australia for the screening of urinary incontinence and pelvic organ prolapse (POP). 13,14 Participants who answered 'yes' to any of the screening questions were informed about the study and invited to participate.
Information on the overall number of women who presented to the service during the study period was not collected as it was not part of the current research aim. Written consent was obtained and women were contacted by telephone to arrange an interview.
Interviews were conducted by the chief investigator in person or over the phone according to the participant's preference.
Data collection included demographic variables of age, body mass index (BMI), parity, and comorbid medical conditions and the type of appointment the woman presented for and was recorded as either 'Women's health/specialist gynaecology clinic', 'General medical' or 'Other'. A validated Pelvic Floor Impact Questionnaire (PFIQ7) was administered. [15][16][17] Birth interventions were coded as 'ever had a birth intervention' which included assisted delivery or caesarean section, but these were also separately considered. The open-ended extended interview questions (see Table 1) were purpose designed and based on previous studies using interviews to explore incontinence and pelvic floor issues. 7,18,19 In order to quantify PFD impact on quality of life and burden of disease, a standardised and validated PFIQ 15,16,20 was administered. A shortened version of this tool, the PFIQ7 has been validated across a broad range of sociocultural and language settings, 21,22,23,24 and will be the first known time it has been specifically applied to Aboriginal people. The PFIQ7 is a composite of three scales measuring symptom distress in women with PFD consisting of questions related to bladder incontinence, faecal incontinence and POP. It uses a set of questions for each of these conditions and combines each score to obtain a total score out of 300, with higher scores indicating higher levels of dysfunction. 17

Data analysis
Analysis of data used an integrated mixed methods approach outlined by Woolley, 25 allowing collection of evidence from both quantitative and qualitative data, thus giving a complementary perspective, that when integrated in analysis, gives a more indepth understanding of the impacts and experiences of PFD in the population studied. Quantitative data were derived from the PFIQ7 scores along with demographic and risk factor frequency information, and was entered into SPSS Version 24 and analysed.
Analysis included the use of means, SD, analysis of variance (ANOVA) and Fisher's exact test for comparison. Independent samples t-tests with equal variance were conducted on the PFIQ7 urinary scores in regard to risk factors to determine how the risk factors affected the scores in this population. For the analysis of the category 'Help-seeking behaviour' Fisher's exact test was used.
ANOVA testing was performed for comparing the PFIQ7 urinary score means according to past birth intervention. P-values of less than 0.05 were deemed significant with a 95% confidence interval.
Due to the small number of women in the POP and faecal incontinence categories, only the sub-score on the urinary impact score was included in the data analysis. The urinary impact score is calculated out of 100 where scores closer to 100 indicate a high level of impact. 15,17 Scores over 50 were deemed to indicate significant impact of PFD on the participants' quality of life.
The semi-structured interviews were transcribed by the interviewer at the time of the interview. Participants were assigned a value P1-P27. Salient themes from interviews were continually confirmed in further interviews until no new themes emerged.
Transcriptions were coded into initial themes using thematic analysis and a theoretical approach was used to capture common patterned responses. 25 The main themes included help-seeking behaviours, embarrassment, normalisation of symptoms and strategies to address the issue, and were coded into frequency data and cross-analysed with quantitative data to detect whether burden of disease scores correlated with management desires or health-seeking behaviours. Qualitative and quantitative data are reported simultaneously to enhance the integrative approach. 25

RESULTS
A total of 27 women enrolled and proceeded to the interview.
Demographic data is presented in Table 2, with an equal number  Other -includes completion of forms, social support visits, witnessing of documentation or visits not pertaining specifically to a medical or women's health presentation.
of women presenting for each of the general practice visit types.
The types of PFD detected on the enrolment screening questions are shown in Figure 1 which also shows most women only experienced urinary incontinence.
The PFIQ7 questionnaire asked additional questions about POP and faecal incontinence with three participants reporting POP and ten participants reporting faecal incontinence (Fig. 2).
The frequency and percentage of the individual pelvic floor risk factors in participants are presented in Table 3.
Each risk factor was compared against the PFIQ7 urinary scores for those with or without the risk factor. The difference between the means of the PFIQ urinary score for each risk factor is presented with P-scores in Table 3 and show how the risk factors affected the scores. There was a significant difference in the mean PFIQ urinary scores for those with chronic cough and obesity.
ANOVA testing for differences in the PFIQ7 urinary score

Help seeking
Women were asked if they had previously sought help for PFD    In-service education for staff on PFD has also taken place.

CONCLUSION
Overall, the burden of PFD symptoms for the Aboriginal women interviewed in this study is high, occurring across a broad age range with a high frequency of associated comorbid risk factors. This study suggests possible service and care delivery strategies that may improve long-term outcomes for Aboriginal women with PFD.
A women's pelvic floor physiotherapy clinic was established at the given Aboriginal medical service as a result of the study's findings.

ACKNOWLEDGEMENT
The authors would like to acknowledge the Redfern Aboriginal  The mean difference between the PFIQ urinary score for those with or without the risk factor; positive mean difference shows that PFIQ urinary scores were higher for those with the risk factor, indicating higher burden of symptoms, negative mean difference shows that PFIQ urinary scores were lower for those without the risk factor, indication lower burden of symptoms.