An Aotearoa New Zealand survey of the impact and diagnostic delay for endometriosis and chronic pelvic pain

Chronic pelvic pain (CPP) causes important negative effects on quality of life. Endometriosis is the most common cause of CPP in females, and diagnostic delay is over six years internationally. Data remain scarce for CPP impact or diagnostic delay in Aotearoa New Zealand. This study used an online survey to explore the impact of CPP on various life domains for those aged over 18. Additionally, for those with an endometriosis diagnosis, diagnostic delay and factors affecting this over time were explored. There were 800 respondent (620 with self-reported endometriosis). CPP symptoms, irrespective of final diagnosis, started prior to age 20 and negatively impacted multiple life domains including employment, education, and relationships. Mean diagnostic delay for those with endometriosis was 8.7 years, including 2.9 years between symptom onset and first presentation and 5.8 years between first presentation and diagnosis. Five doctors on average were seen prior to diagnosis. However, there was a reduction in the interval between first presentation and diagnosis over time, from 8.4 years for those presenting before 2005, to two years for those presenting after 2012. While diagnostic delay is decreasing, CPP, irrespective of aetiology, continues to have a significant negative impact on the lives of those affected

How big is your bubble? : characteristics of self-isolating household units ('bubbles') during the COVID-19 Alert Level 4 period in New Zealand : a cross-sectional survey

Objective To characterise the self-isolating household units (bubbles) during the COVID-19 Alert Level 4 lockdown in New Zealand. Design, setting and participants In this cross-sectional study, an online survey was distributed to a convenience sample via Facebook advertising and the Medical Research Institute of New Zealand's social media platforms and mailing list. Respondents were able to share a link to the survey via their own social media platforms and by email. Results were collected over 6 days during Alert Level 4 from respondents living in New Zealand, aged 16 years and over. Main outcomes measures The primary outcome was the mean size of a self-isolating household unit or bubble. Secondary outcomes included the mean number of households in each bubble, the proportion of bubbles containing essential workers and/or vulnerable people, and the mean number of times the home was left each week. Results 14 876 surveys were included in the analysis. The mean (SD) bubble size was 3.58 (4.63) people, with mean (SD) number of households 1.26 (0.77). The proportion of bubbles containing one or more essential workers, or one or more vulnerable persons was 45.3% and 42.1%, respectively. The mean number of times individual bubble members left their home in the previous week was 12.9 (12.4). Bubbles that contained at least one vulnerable individual had fewer outings over the previous week compared with bubbles that did not contain a vulnerable person. The bubble sizes were similar by respondent ethnicity. Conclusion In this New Zealand convenience sample, bubble sizes were small, mostly limited to one household, and a high proportion contained essential workers and/or vulnerable people. Understanding these characteristics from a country which achieved a low COVID-19 infection rate may help inform public health interventions during this and future pandemics

Efficacy of a 3% kānuka oil cream for the treatment of moderate-to-severe eczema : a single blind randomised vehicle-controlled trial

Background: Māori, the indigenous people of New Zealand, have traditionally used the kānuka tree as part of their healing system, Rongoā Māori, and the oil from the kānuka tree has demonstratable anti-inflammatory and anti-bacterial properties. This trial investigated the efficacy and safety of a 3% kānuka oil (KO) cream compared to vehicle control (VC) for the topical treatment of eczema. The trial was conducted through a nationwide community pharmacy research network. Methods: This single-blind, parallel-group, randomised, vehicle-controlled trial was undertaken in 11 research trained community pharmacies across New Zealand. Eighty adult participants with self-reported moderate-to-severe eczema, assessed by Patient Orientated Eczema Measure (POEM) were randomised by blinded investigators to apply 3% KO cream or VC topically, twice daily, for six weeks. Randomisation was stratified by site and eczema severity, moderate versus severe. Primary outcome was difference in POEM scores at week six between groups by intention to treat. The study is registered on the Australian New Zealand Clinical Trial Registry (ANZCTR) reference number, ACTRN12618001754235. Findings: Eighty participants were recruited between 17 May 2019 and 10 May 2021 (41 KO group, 39 VC group). Mean POEM score (standard deviation) improved between baseline and week six for KO group, 18·4 (4·4) to 6·8 (5·5), and VC group, 18·7 (4·5) to 9·8 (6·5); mean difference between groups (95% confidence interval) was -3·1 (-6·0 to -0·2), p = 0·036. There were three adverse events reported in the KO group related to the intervention and two in the control group. Interpretation: The KO group had a significant improvement in POEM score compared to VC. Rates of adverse events and withdrawals were similar between groups with no serious adverse events reported. Treatment acceptability was high for both groups across all domains. Our results suggest that in adults with moderate-to-severe eczema, the addition of KO to a daily emollient regimen led to a reduction in POEM score compared to VC. KO may represent an effective, safe, and well tolerated treatment for moderate-to-severe eczema in adults

The impact of diagnostic method on sense of control and powerlessness and social support in endometriosis patients - a retrospective cohort study

Introduction: It is recognized that for individuals living with endometriosis, receiving a diagnosis is psychosocially beneficial, but little is known about whether this is influenced by the way in which the disease is diagnosed. The primary objective of this study was to determine the impact of the diagnostic test method (clinical, diagnostic imaging, or diagnostic laparoscopy) of endometriosis on the individual's sense of control over their disease and their perceived access to social supports. The secondary objectives were to identify the impact of the diagnostic method on perceived social support, and to explore if there was a difference in the diagnostic method utilization between countries. Material and Methods: This retrospective cohort study reports on data collected using the Endometriosis Health Profile-30 (EHP-30) section of a previously published larger survey conducted between May and July 2020. Women aged 18–55 years who had received a diagnosis of endometriosis were recruited by social media platforms. The two domains of interest on the EHP-30 were control and powerlessness and social support. Scores on these domains were analyzed with diagnosis method as the variable of interest. Results: In all, 1634 valid survey responses were received. There was a small statistically significant difference found between control and powerlessness scores for patients that received a diagnosis via imaging (ultrasound/MRI; n = 120) versus clinical diagnosis (n = 121) (p = 0.049). However, this did not reach clinical significance when covariates were controlled for (p = 0.054). No other comparisons reached statistical significance. Conclusions: The diagnostic method of endometriosis does not appear to have a clinically significant impact on an individual's sense of control over their disease nor their access to social supports. However, further research into these domains to delineate the true impact of the diagnostic method is required

[In Press] Anatomical distribution of endometriosis : a cross-sectional analysis of transvaginal ultrasound in symptomatic patients

Purpose: The anatomical distribution of deep endometriosis (DE) is essential in treating patients with symptoms associated with the disease. There is an evidence gap in correlating clinical features and symptoms with disease patterns. The study aimed at determining DE anatomic distribution based on advanced transvaginal ultrasound and describe the relationship with symptoms obtained with the World Endometriosis Foundation Questionnaire. Methods: A cross-sectional study included 549 ultrasound results and 370 questionnaire responses between July 2018 and January 2021. Descriptive statistics are presented. Continuous variables were compared by a simple t-test and ANOVA and categorical variables by the chi-squared test. Logistic regression and R2 values summarised the relationship between positive ultrasound and possible predictor variables (software SAS version 9.4). Results: The anatomical locations with signs of endometriosis on ultrasound were the right uterosacral ligament (USL) 23.3% (n = 128), left USL 21.3% (n = 117) and bowel 19.1% (n = 105). Endometriomas in the right and left ovaries (14%, n = 77, and 14.7%, n = 81 respectively), superficial endometriosis in 15.5% (n = 85), torus uterinus in 11.7% (n = 64), Pouch of Douglas (POD) in 9.7% (n = 53), rectovaginal septum in 4.2% (n = 23), vaginal fornix in 3.5% (n = 19). A negative ‘sliding-sign’ was noted in 25.3% (n = 139), and ovarian medial immobility was noted frequently (left 20.2%, n = 111 and right 16.9%, n = 93). Dyspareunia, dysmenorrhoea, infertility and family history were associated with endometriosis lesions (P < 0.05). Prediction models based on symptomatology presented low discriminatory power. Discussion: This large real-life cohort associating the description of the anatomical distribution of endometriosis as seen on advanced TVS in symptomatic patients confirmed that uterosacral ligaments, torus uterinus, ovaries and bowel represent the most common anatomical sites of endometriosis. Also, the dynamic abnormalities elicited via ultrasound, such as the uterus ‘slidingsign’ and ovarian mobility, remain common. The knowledge of the general locations of identifiable endometriosis on ultrasound and the dynamic abnormalities is essential to sonologists and sonographers in implementing advanced TVS protocols to detect endometriosis. In addition, the different presentations of dyspareunia can be associated with USL and bowel endometriosis. Subfertility might also be associated with USL, ovarian and bowel endometriosis. Nevertheless, prediction models showed suboptimal results

Medical cannabis : knowledge and expectations in a cohort of North Island New Zealand general practitioners

AIM: To investigate GP knowledge of the use of cannabis as a medicine and its regulation in New Zealand. METHOD: A convenience sample of GPs completed a questionnaire during continuing medical education sessions. Key domains investigated were: patient interactions around use of cannabis as a medicine; prescription facilitation and impediments; knowledge of evidence for and against the use of cannabis as a medicine; knowledge of the New Zealand regulatory processes and knowledge of pharmaceutical grade products. Questionnaires were administered between June and October 2018. RESULTS: There were 42/76 (55%) GPs who stated at least one patient had asked for a cannabis prescription for medical use in the last 12 months and 43/76 (57%) were aware of pharmaceutical grade preparations, the majority Sativex. There were 59/75 (79%) who expressed concerns about future prescribing; however, 63/75 (84%) indicated they would be 'somewhat' or 'very' likely to prescribe a PHARMAC-funded product with good evidence in specific conditions. CONCLUSION: Some GPs have concerns about prescribing medicinal cannabis. Due to regulatory restrictions, including no currently funded products, and uncertain scientific evidence of efficacy and safety, education programmes will be required to inform the medico-legal, evidential and practical elements of prescribing cannabis as a medicine

Knowledge and perspectives about the use of cannabis as a medicine : a mixed methods observational study in a cohort of New Zealand general practice patients

AIM: To determine what patients presenting to general practice (GP) understand about the use of cannabis as a medicine, beliefs of how this may impact their medical conditions and interactions with doctors. METHOD: An in-person survey of 134 GP patients from four GP practices throughout the North Island of New Zealand undertaken from November 2018 to October 2019. RESULTS: Fifty-five percent of the sample were female, with 40% of all participants aged 60 years plus. Ninety-one percent of participants indicated they would use a prescribed medicinal cannabis product while 45% reported they believed it may be of some benefit to their medical condition. Of those who believed it beneficial, 71% indicated they thought it useful for pain relief. Participants indicated comfort discussing medicinal cannabis use with GPs and specialists (92% respectively); however, less than 10% had done this. CONCLUSIONS: Just under half of patients surveyed believe that medicinal cannabis products may be helpful to their condition, and while the majority report willingness, few have discussed this with their GP or specialist. There is need for accessible, accurate information regarding the use of cannabis-based medicine for patients and doctors alike to guide the patient-doctor consultation and decrease barriers to open discussion

How best to share research with study participants? : a randomised crossover trial comparing a comic, lay summary, and scientific abstract

Healthcare research is traditionally published in academic papers, coded in scientific language, and locked behind paywalls–an inaccessible form for many. Sharing research results with participants and the public in an appropriate, accessible manner, is an ethical practice directed in research guidance. Evidence-based recommendations for the medium used are scant, but science communication advice advocates principles which may be fulfilled well by the medium of comics. We report a randomised crossover study conducted online, comparing participant preferences for research results shared in the medium of a comic, a traditional lay text summary, and the control approach of a scientific abstract. 1236 respondents read all three summaries and ranked their most and least preferred formats. For the most preferred summary, the comic was chosen by 716 (57.9%), lay summary by 321 (26.0%), and scientific abstract by 199 (16.1%) respondents. For the least preferred summary the scientific abstract was chosen by 614 (49.7%), lay summary by 380 (30.7%) and comic by 242 (19.6%). Review of free-text responses identified key reasons for the majority preferring the comic over the others, which included finding this easier to read and understand, more enjoyable to consume, and more satisfactory as a medium of communication

Using comics and curiosity to drive pandemic research on a national scale

An independent online Public Health survey regarding the COVID-19 pandemic was conducted during an Alert Level 4 lockdown, the highest possible, in New Zealand. An illustrated and curiosity-driven public engagement campaign was designed to advertise survey participation, and performance compared with a standard approach using randomised controlled A/B Split tests. The ‘Caretoon’ approach featured comic illustrations, appealed to goodwill and was intended to pique curiosity. This linked to an illustrated version of the survey which, upon completion, gave a personalised comic summary showing how respondent’s answers compared with national averages. The standard ad and survey were not illustrated with comics, and did not provide a personalised comic summary on completion. Both approaches were cost- and time-effective, together resulting in 18,788 responses over six days. The Caretoon approach outperformed the standard approach in terms of the number of people reached, engaged, survey link clicks, gender and ethnic diversity amongst respondents, and cost-effectiveness of advertising. This came at the expense of a small reduction in the proportion of completed surveys and male respondents. The research evidences objective value of public engagement activity, comics and curiosity as tools which can support Public Health research on a national scale

External validation of the "2021 AAGL endometriosis classification" : a retrospective cohort study

STUDY OBJECTIVE: Externally validate the AAGL staging system against surgical complexity, and compare diagnostic accuracy with rASRM stage, as was done in original publication. DESIGN: Retrospective, diagnostic accuracy study SETTING: : Multicentre (Sydney, Australia) PATIENTS: : 317 patients (January 2016 - October 2021) were used in the final analysis INTERVENTIONS: : A database of patients with coded surgical data was analysed. MEASUREMENTS: Three independent observers assigned an AAGL surgical stage (1 to 4) as the index test, and surgical complexity level (A to D) as the reference standard. Results from the most accurate of the three observers were used in the final analysis. MAIN RESULTS: The weighted kappa score for the overall performance of AAGL stage and rASRM to predict AAGL level was 0.48 and 0.48 respectively (no difference). This was lower than the weighted kappa of 0.62 in the original paper. Diagnostic accuracy (sensitivity, specificity, PPV and NPV) for stage 1 to predict level A 98.5%, 64.3%, 66.3%, and 98.3%; stage 2 to predict level B 31.2%, 90.5%, 27.0%, and 92.1 %; stage 3 to predict level C 12.3%, 94.1%, 59.3%, and 60.7%; stage 4 to predict level D 95.65%, 88.10%, 38.60%, and 99.62%. AUROC for A vs B/C/D (cut-point 9) was 0.87, A/B vs C/D (cut-point 16) was 0.78 and A/B/C vs D (cut-point 22) was 0.94. CONCLUSION: There was weak to moderate agreement between AAGL stage and AAGL surgical complexity level. Across all key indicators, the AAGL system did not perform as well in this external validation, nor did it outperform rASRM as it did in the reference paper. Results suggest the system is not generalizable