Nikki McCaffrey
Current Organizations / Institutes
The organizations/institutes from the scholar's latest article
Previous Organizations / Institutes
The organizations / institutes from the scholar's other articles in the past ten years
Research Subjects
Nikki McCaffrey has a total of 288 co-authors. Here are the top co-authors by number of shared publications:
- David Christopher Currow
Flinders University, Sydney (NSW), Australia
24 shared publications - Julie Ratcliffe
Flinders University
12 shared publications - Jessica Bucholc
Deakin Health Economics, Institute for Health Transformation, School of Health and Social Development, Deakin University, Geelong, Australia
8 shared publications - Lidia Engel
Monash University
8 shared publications Simon Eckermann
10 Australian Health Services Research Institute, University of Wollongong, Wollongong, NSW, Australia
8 shared publications- Ann Livingstone
Deakin Health Economics, Institute for Health Transformation, School of Health and Social Development, Deakin University, Geelong, Australia
7 shared publications
Latest Publications
- Open Access
- 28 October 2026
- Published by Springer Nature in BMC Primary Care
A systematic review of reviews of the effectiveness of training primary care practitioners in dermoscopy to detect skin cancers
Background: Training primary care practitioners (PCPs) in dermoscopy may improve the early detection of skin cancers. However, evidence on the effectiveness and sustainability of different training approaches remains inconsistent. This systematic review of reviews aimed to synthesise the quality and findings of existing systematic and scoping reviews on dermoscopy training for PCPs, and to identify implications for implementation and future research. Methods: Searches were conducted from database inception across the Cochrane Library, CINAHL, EMBASE, and MEDLINE in August 2023 and updated in September 2025. Peer-reviewed systematic and scoping reviews available in English were included. Methodological quality was assessed with the Critical Appraisal Tool for Health Promotion and Prevention Reviews, with overlap between reviews evaluated using pairwise Corrected Covered Area analysis. Findings were synthesised narratively. Results: Of the 622 records screened, 8 met the inclusion criteria (systematic n = 4, scoping n = 4). Most reviews were very low or low quality (88%) with substantial overlap of primary studies. Reviews consistently reported that dermoscopy training was associated with improvements in diagnostic accuracy (estimates across the reviews ranged from sensitivity 70–95%, specificity 65–90%) and practitioner confidence, particularly when delivered through live, interactive, and multi-modal approaches. Whilst outcome measures were heterogeneous, follow-up periods typically short, and standardised assessment frameworks were lacking, the available evidence suggests that refresher training materials are needed for longer-term skill retention. However, these recommendations are based on a small proportion of studies and limited evidence. There was insufficient evidence to determine the optimal type and frequency of training, and evidence relating to cost-effectiveness was very limited. Conclusions: Dermoscopy training appears to improve confidence and diagnostic performance among PCPs. However, uncertainty remains regarding how training should be delivered and maintained to achieve sustained improvements in practice. Confidence in these findings is limited by the low quality of the reviews, overlap within the review-level evidence base, and heterogeneous outcomes and follow-up duration. Future research should establish standardised outcome measures and longer-term evaluation frameworks, including economic assessment, to support implementation and inform policy and funding decisions in primary care. Protocol registration: The systematic review of reviews is registered in PROSPERO (CRD42023396276).
- 28 October 2026
- Published by Springer Nature in BMC Primary Care
Open AccessA systematic review of reviews of the effectiveness of training primary care practitioners in dermoscopy to detect skin cancers
Background: Training primary care practitioners (PCPs) in dermoscopy may improve the early detection of skin cancers. However, evidence on the effectiveness and sustainability of different training approaches remains inconsistent. This systematic review of reviews aimed to synthesise the quality and findings of existing systematic and scoping reviews on dermoscopy training for PCPs, and to identify implications for implementation and future research. Methods: Searches were conducted from database inception across the Cochrane Library, CINAHL, EMBASE, and MEDLINE in August 2023 and updated in September 2025. Peer-reviewed systematic and scoping reviews available in English were included. Methodological quality was assessed with the Critical Appraisal Tool for Health Promotion and Prevention Reviews, with overlap between reviews evaluated using pairwise Corrected Covered Area analysis. Findings were synthesised narratively. Results: Of the 622 records screened, 8 met the inclusion criteria (systematic n = 4, scoping n = 4). Most reviews were very low or low quality (88%) with substantial overlap of primary studies. Reviews consistently reported that dermoscopy training was associated with improvements in diagnostic accuracy (estimates across the reviews ranged from sensitivity 70–95%, specificity 65–90%) and practitioner confidence, particularly when delivered through live, interactive, and multi-modal approaches. Whilst outcome measures were heterogeneous, follow-up periods typically short, and standardised assessment frameworks were lacking, the available evidence suggests that refresher training materials are needed for longer-term skill retention. However, these recommendations are based on a small proportion of studies and limited evidence. There was insufficient evidence to determine the optimal type and frequency of training, and evidence relating to cost-effectiveness was very limited. Conclusions: Dermoscopy training appears to improve confidence and diagnostic performance among PCPs. However, uncertainty remains regarding how training should be delivered and maintained to achieve sustained improvements in practice. Confidence in these findings is limited by the low quality of the reviews, overlap within the review-level evidence base, and heterogeneous outcomes and follow-up duration. Future research should establish standardised outcome measures and longer-term evaluation frameworks, including economic assessment, to support implementation and inform policy and funding decisions in primary care. Protocol registration: The systematic review of reviews is registered in PROSPERO (CRD42023396276).
- Open Access
- 9 September 2026
- Published by Wiley in Health Expectations
- Vol. 29 (5) , e70830
Access to Supportive Care Among Australian Cancer Carers: Experiences of Priority Populations
Background: Informal carers are essential in supporting people with cancer yet often experience unmet supportive care needs. Aims: The aim of this study was to examine (a) access to supportive care services (b) perceived barriers to accessing services, and (c) the potential influence of carer health literacy on access and barriers to supportive care among carers across three priority population groups (rural‐remote‐dwelling, LGBTIQA+ and culturally and linguistically diverse (CALD)). Methods: Cross‐sectional online survey of Australian adult cancer carers. Supportive care use, access barriers, and health literacy (Health Literacy of Caregivers Scale – Cancer (HLSC‐C)) were assessed. Logistic regression examined differences across priority groups, and mediation analyses explored the role of health literacy. Results: Among 1154 carers, 61.9% accessed some supportive care (46.7% formal services), yet 86.6% reported at least one barrier, with 71.0% reporting two or more. Common barriers were time constraints, service availability, and long wait times. Compared to non‐priority population carers, rural/remote carers had higher odds of reporting limited local availability and services not available when needed (aOR = 5.08 for both). CALD carers had higher odds of reporting a barrier (aOR = 1.81), including long wait times, cost, and lack of culturally appropriate services (aOR = 33.03). Health literacy significantly mediated the association between CALD status and reported barriers. Conclusions: Cancer carers have limited access to supportive care and face systemic barriers. Inequities remain, particularly for carers from rural/remote areas and those from CALD backgrounds. To improve equity, there is a need for co‐designed, accessible interventions that address health literacy and the diverse geographic, cultural, and linguistic needs of carers. Patient or Public Contribution: People with lived experience of cancer caregiving were included on this study's advisory committee. In this role, their expertise informed the study design, including the development of the questionnaire, the Participant Information and Consent Form (PICF), and recruitment processes. They were also invited to contribute to data interpretation and the preparation of this manuscript. The lead consumer representative (NR) is listed as a co‐author on this manuscript.
- 9 September 2026
- Published by Wiley in Health Expectations
- Vol. 29 (5) , e70830
Open AccessAccess to Supportive Care Among Australian Cancer Carers: Experiences of Priority Populations
Background: Informal carers are essential in supporting people with cancer yet often experience unmet supportive care needs. Aims: The aim of this study was to examine (a) access to supportive care services (b) perceived barriers to accessing services, and (c) the potential influence of carer health literacy on access and barriers to supportive care among carers across three priority population groups (rural‐remote‐dwelling, LGBTIQA+ and culturally and linguistically diverse (CALD)). Methods: Cross‐sectional online survey of Australian adult cancer carers. Supportive care use, access barriers, and health literacy (Health Literacy of Caregivers Scale – Cancer (HLSC‐C)) were assessed. Logistic regression examined differences across priority groups, and mediation analyses explored the role of health literacy. Results: Among 1154 carers, 61.9% accessed some supportive care (46.7% formal services), yet 86.6% reported at least one barrier, with 71.0% reporting two or more. Common barriers were time constraints, service availability, and long wait times. Compared to non‐priority population carers, rural/remote carers had higher odds of reporting limited local availability and services not available when needed (aOR = 5.08 for both). CALD carers had higher odds of reporting a barrier (aOR = 1.81), including long wait times, cost, and lack of culturally appropriate services (aOR = 33.03). Health literacy significantly mediated the association between CALD status and reported barriers. Conclusions: Cancer carers have limited access to supportive care and face systemic barriers. Inequities remain, particularly for carers from rural/remote areas and those from CALD backgrounds. To improve equity, there is a need for co‐designed, accessible interventions that address health literacy and the diverse geographic, cultural, and linguistic needs of carers. Patient or Public Contribution: People with lived experience of cancer caregiving were included on this study's advisory committee. In this role, their expertise informed the study design, including the development of the questionnaire, the Participant Information and Consent Form (PICF), and recruitment processes. They were also invited to contribute to data interpretation and the preparation of this manuscript. The lead consumer representative (NR) is listed as a co‐author on this manuscript.
- Open Access
- 14 August 2026
- Published by Springer Nature in BMC Public Health
- Vol. 26 (1) , 2356
Breathlessness limiting exertion and under- and unemployment: results from a national, online population survey
Background: Loss of, or unwanted changes in employment reduces economic wellbeing and is associated with lower quality of life. People living with chronic breathlessness are less likely to participate in the workforce. The influence of breathlessness on change in employment status is unknown. This study investigates associations between self-reported breathlessness limiting exertion (hereafter breathlessness ) and changes in employment status. Methods: Cross-sectional, online population survey of individuals aged 18–65 years old from Australia. Current and change of employment status, and breathlessness (assessed using modified Medical Research Council [mMRC] ≥ 1) were analysed using multivariate logistic regression to establish odds ratio (OR) and 95% confidence intervals (95%CI), adjusted for possible confounding effects. Results: Eight thousand people were included; 5,730 (72%) were employed and 43% reported breathlessness . Breathlessness was associated with a change from full-time employment to another employment status: mMRC1 OR: mMRC1 OR: 6.60 (3.4–13.7); mMRC2 OR: 15.7 (7.7–34.2); and mMRC3-4 OR: 31.9 (13.8–75.4); and with being unemployed: mMRC1 OR: 1.20 (1.05–1.4); mMRC2 OR: 1.57 (1.3–1.9); and mMRC3-4 OR: 1.59 (1.1–2.3). Conclusion: Breathlessness is associated with lower rates of employment and a higher probability of reducing work hours or becoming unemployed. The presence of chronic breathlessness should lead health professionals to explore the employment (and financial) consequences for the person.
- 14 August 2026
- Published by Springer Nature in BMC Public Health
- Vol. 26 (1) , 2356
Open AccessBreathlessness limiting exertion and under- and unemployment: results from a national, online population survey
Background: Loss of, or unwanted changes in employment reduces economic wellbeing and is associated with lower quality of life. People living with chronic breathlessness are less likely to participate in the workforce. The influence of breathlessness on change in employment status is unknown. This study investigates associations between self-reported breathlessness limiting exertion (hereafter breathlessness ) and changes in employment status. Methods: Cross-sectional, online population survey of individuals aged 18–65 years old from Australia. Current and change of employment status, and breathlessness (assessed using modified Medical Research Council [mMRC] ≥ 1) were analysed using multivariate logistic regression to establish odds ratio (OR) and 95% confidence intervals (95%CI), adjusted for possible confounding effects. Results: Eight thousand people were included; 5,730 (72%) were employed and 43% reported breathlessness . Breathlessness was associated with a change from full-time employment to another employment status: mMRC1 OR: mMRC1 OR: 6.60 (3.4–13.7); mMRC2 OR: 15.7 (7.7–34.2); and mMRC3-4 OR: 31.9 (13.8–75.4); and with being unemployed: mMRC1 OR: 1.20 (1.05–1.4); mMRC2 OR: 1.57 (1.3–1.9); and mMRC3-4 OR: 1.59 (1.1–2.3). Conclusion: Breathlessness is associated with lower rates of employment and a higher probability of reducing work hours or becoming unemployed. The presence of chronic breathlessness should lead health professionals to explore the employment (and financial) consequences for the person.
- Open Access
- 14 February 2026
- Published by Oxford University Press (OUP) in European Journal of Cardiovascular Nursing
- Vol. 25 (5) , 1054-1057
Patient perspectives on multidisciplinary management of postural orthostatic tachycardia syndrome (POTS): insights from real-world experience
- 14 February 2026
- Published by Oxford University Press (OUP) in European Journal of Cardiovascular Nursing
- Vol. 25 (5) , 1054-1057
Open AccessPatient perspectives on multidisciplinary management of postural orthostatic tachycardia syndrome (POTS): insights from real-world experience
- 3 December 2025
- Published by Wiley in Journal of Clinical Nursing
- Vol. 35 (4) , 1541-1555
Exploring the Service Features of Telephone Cancer Information and Support Services From Callers' Experiences: A Qualitative Evidence Synthesis
Aim: This study aims to synthesise evidence on users' experiences of telephone cancer information and support services (CISS) to identify important service features and inform service development. Design: A qualitative evidence synthesis. Methods and Data Sources: OVID MEDLINE, EMBASE, CINAHL, PsycINFO and SocINDEX databases were searched for peer‐reviewed qualitative literature fitting the inclusion criteria from database inception to 30 March 2023. The included articles were double‐screened, and quality appraised using the CASP checklist. GRADE‐CERQual was used as a tool to assess the confidence of review findings. Content synthesis combined the qualitative data with the Loiselle cancer experience measurement framework guiding analysis. This paper is reported as per the equator network recommended SRQR checklist. Results: Of the 607 articles screened, seven studies were included. Four main themes and 14 sub‐themes about CISS aspects were identified: psychological well‐being (managing emotions/coping, hope/reassurance, supporting close others and a reluctance to call the CISS); knowledge is power (information seeking, the burden of knowledge and empowerment); truth and clarity (adjunct support, credible source and improved understanding and confidence); and service adequacy (operators' ability to connect with users, convenience, service provision and awareness, and the cancer journey). Conclusion: Findings suggest people with cancer and their carers accessing a CISS value emotional support combined with trusted information, topic expertise and a connection with the service operator. future service provision should address the lack of awareness regarding the range of services and the convenience extended operating hours may offer. Implications for Patient Care: The results add to our understanding of CISS service provision. However, knowledge gaps remain regarding preferences among service features and the hierarchy of CISS characteristics to be prioritised to enhance services. Impact: Focused CISS awareness campaigns will inform communities and healthcare professionals of the available resources to improve the lives of those affected by cancer. Ongoing service review will enable resources to be tailored to callers' needs, potentially easing the burden on existing services that are overwhelmed and under‐resourced. Patient or Public Contribution: This qualitative evidence synthesis did not directly involve patient or public contribution to the manuscript. Trial Registration: Systematic Review Registration Number ( PROSPERO ): CRD42023413897
- 3 December 2025
- Published by Wiley in Journal of Clinical Nursing
- Vol. 35 (4) , 1541-1555
Exploring the Service Features of Telephone Cancer Information and Support Services From Callers' Experiences: A Qualitative Evidence Synthesis
Aim: This study aims to synthesise evidence on users' experiences of telephone cancer information and support services (CISS) to identify important service features and inform service development. Design: A qualitative evidence synthesis. Methods and Data Sources: OVID MEDLINE, EMBASE, CINAHL, PsycINFO and SocINDEX databases were searched for peer‐reviewed qualitative literature fitting the inclusion criteria from database inception to 30 March 2023. The included articles were double‐screened, and quality appraised using the CASP checklist. GRADE‐CERQual was used as a tool to assess the confidence of review findings. Content synthesis combined the qualitative data with the Loiselle cancer experience measurement framework guiding analysis. This paper is reported as per the equator network recommended SRQR checklist. Results: Of the 607 articles screened, seven studies were included. Four main themes and 14 sub‐themes about CISS aspects were identified: psychological well‐being (managing emotions/coping, hope/reassurance, supporting close others and a reluctance to call the CISS); knowledge is power (information seeking, the burden of knowledge and empowerment); truth and clarity (adjunct support, credible source and improved understanding and confidence); and service adequacy (operators' ability to connect with users, convenience, service provision and awareness, and the cancer journey). Conclusion: Findings suggest people with cancer and their carers accessing a CISS value emotional support combined with trusted information, topic expertise and a connection with the service operator. future service provision should address the lack of awareness regarding the range of services and the convenience extended operating hours may offer. Implications for Patient Care: The results add to our understanding of CISS service provision. However, knowledge gaps remain regarding preferences among service features and the hierarchy of CISS characteristics to be prioritised to enhance services. Impact: Focused CISS awareness campaigns will inform communities and healthcare professionals of the available resources to improve the lives of those affected by cancer. Ongoing service review will enable resources to be tailored to callers' needs, potentially easing the burden on existing services that are overwhelmed and under‐resourced. Patient or Public Contribution: This qualitative evidence synthesis did not directly involve patient or public contribution to the manuscript. Trial Registration: Systematic Review Registration Number ( PROSPERO ): CRD42023413897
- Open Access
Online randomised e-hypnotherapy for chronic pelvic pain study (REST): comparing e-hypnotherapy with relaxation and waitlist to improve pain, cost-effectiveness and biopsychosocial outcomes
Background Chronic pelvic pain, defined as persistent pain in the structures of the pelvis, is a condition that significantly impacts the health-related quality of life (HRQoL) of up to one-third of people worldwide, with substantial associated costs to both the individual and healthcare system/s. The present trial aims to establish the efficacy of e-hypnotherapy over relaxation and waitlist controls on pain, HRQoL and biopsychosocial outcomes, and evaluate cost-effectiveness. Methods A parallel-group, investigator-blinded, randomised controlled trial will be conducted. Eligible participants will be randomly allocated to either a 7-week online personalised e-hypnotherapy programme (n=44), a 7-week online personalised relaxation control (n=44) or waitlist control (n=44). The primary outcome will be self-reported pain level, and secondary outcomes will include psychological distress, QoL, pain catastrophising, self-efficacy, central sensitisation, somatic symptoms, fatigue and sleep. Cost-effectiveness will also be examined. Longitudinal qualitative interviews will be conducted with participants in the e-hypnotherapy (n=20) and relaxation (n=20) groups to understand meaningful change and barriers/facilitators for ongoing use. Ethics and dissemination This protocol has received ethics approval in Australia from the Deakin University Research Ethics Committee (DUREC ref. 2024-080). Findings will be disseminated through peer-reviewed publications and presentations at national and international conferences related to chronic pelvic pain and mind–body interventions. Trial registration number Australian New Zealand Clinical Trials Registry ACTRN12623000368639p.
Open AccessOnline randomised e-hypnotherapy for chronic pelvic pain study (REST): comparing e-hypnotherapy with relaxation and waitlist to improve pain, cost-effectiveness and biopsychosocial outcomes
Background Chronic pelvic pain, defined as persistent pain in the structures of the pelvis, is a condition that significantly impacts the health-related quality of life (HRQoL) of up to one-third of people worldwide, with substantial associated costs to both the individual and healthcare system/s. The present trial aims to establish the efficacy of e-hypnotherapy over relaxation and waitlist controls on pain, HRQoL and biopsychosocial outcomes, and evaluate cost-effectiveness. Methods A parallel-group, investigator-blinded, randomised controlled trial will be conducted. Eligible participants will be randomly allocated to either a 7-week online personalised e-hypnotherapy programme (n=44), a 7-week online personalised relaxation control (n=44) or waitlist control (n=44). The primary outcome will be self-reported pain level, and secondary outcomes will include psychological distress, QoL, pain catastrophising, self-efficacy, central sensitisation, somatic symptoms, fatigue and sleep. Cost-effectiveness will also be examined. Longitudinal qualitative interviews will be conducted with participants in the e-hypnotherapy (n=20) and relaxation (n=20) groups to understand meaningful change and barriers/facilitators for ongoing use. Ethics and dissemination This protocol has received ethics approval in Australia from the Deakin University Research Ethics Committee (DUREC ref. 2024-080). Findings will be disseminated through peer-reviewed publications and presentations at national and international conferences related to chronic pelvic pain and mind–body interventions. Trial registration number Australian New Zealand Clinical Trials Registry ACTRN12623000368639p.
- 17 November 2025
- Published by Springer Nature in Supportive Care in Cancer
- Vol. 33 (12) , 1072
A modelled cost-utility analysis comparing early referral to specialist palliative care versus standard care for older people with acute myeloid leukaemia
Aim To investigate whether early referral to specialist palliative care (SPC) is cost-effective compared to standard care for people ≥ 60 years of age with newly diagnosed acute myeloid leukaemia (AML). Methods A modelled cost-utility analysis, from an Australian public healthcare system perspective, over a 5-year time horizon. A systematic review of studies reporting health state utility values (HSUVs), or convertible health-related quality of life measures, provided values for the decision tree model. Cost and effectiveness data were sourced from a broad review of the literature. All costs were estimated using 2022 Australian prices. Scenario analyses and sensitivity analyses explored the impact of varying key assumptions on the results. To account for uncertainty in the model, the mean of Monte Carlo simulation with 10,000 iterations, and 95% uncertainty intervals were reported for base case and scenario analyses results. Results For the deterministic base case, SPC was associated with mean incremental cost-saving (AUD −$2805) and greater mean incremental quality-adjusted life years (QALYs [0.05]). In probabilistic sensitivity analysis, the probability of SPC being cost-effective or dominant was 57.3%. In scenario analyses, SPC dominated standard care in all eight scenarios. In one-way sensitivity analysis, results were sensitive to utility values in treatment-related health states. Conclusions Findings indicate early SPC is likely to be cost-saving and more effective than standard care. Results must be interpreted cautiously given the reliance on assumptions and uncertainty of inputs in the model. However, findings are promising and warrant further research.
- 17 November 2025
- Published by Springer Nature in Supportive Care in Cancer
- Vol. 33 (12) , 1072
A modelled cost-utility analysis comparing early referral to specialist palliative care versus standard care for older people with acute myeloid leukaemia
Aim To investigate whether early referral to specialist palliative care (SPC) is cost-effective compared to standard care for people ≥ 60 years of age with newly diagnosed acute myeloid leukaemia (AML). Methods A modelled cost-utility analysis, from an Australian public healthcare system perspective, over a 5-year time horizon. A systematic review of studies reporting health state utility values (HSUVs), or convertible health-related quality of life measures, provided values for the decision tree model. Cost and effectiveness data were sourced from a broad review of the literature. All costs were estimated using 2022 Australian prices. Scenario analyses and sensitivity analyses explored the impact of varying key assumptions on the results. To account for uncertainty in the model, the mean of Monte Carlo simulation with 10,000 iterations, and 95% uncertainty intervals were reported for base case and scenario analyses results. Results For the deterministic base case, SPC was associated with mean incremental cost-saving (AUD −$2805) and greater mean incremental quality-adjusted life years (QALYs [0.05]). In probabilistic sensitivity analysis, the probability of SPC being cost-effective or dominant was 57.3%. In scenario analyses, SPC dominated standard care in all eight scenarios. In one-way sensitivity analysis, results were sensitive to utility values in treatment-related health states. Conclusions Findings indicate early SPC is likely to be cost-saving and more effective than standard care. Results must be interpreted cautiously given the reliance on assumptions and uncertainty of inputs in the model. However, findings are promising and warrant further research.
- Open Access
- 11 November 2025
- Published by Elsevier in Social Science & Medicine
- Vol. 390, 118762
A scoping review of preference-based instruments for measuring carer outcomes in economic evaluations
- 11 November 2025
- Published by Elsevier in Social Science & Medicine
- Vol. 390, 118762
Open AccessA scoping review of preference-based instruments for measuring carer outcomes in economic evaluations
- Open Access
Co-designing, evaluating and implementing online supportive care for endometriosis in Australia: study protocol for the hybrid type 1 effectiveness, cost-effectiveness and implementation randomised controlled trial of the CodeEndo program
Introduction Endometriosis is a chronic condition affecting up to 11% of people presumed female at birth by the age of 44 years, characterised by the growth of tissue similar to the lining of the uterus on other organs. Endometriosis significantly impacts health-related quality of life (HRQoL) and imposes a substantial burden on both individuals and the healthcare system. International guidelines recommend the interdisciplinary management of endometriosis due to its significant biopsychosocial burden; however, research aimed at exploring psychological approaches for endometriosis is limited. This trial aims to evaluate the effectiveness of CodeEndo, an online co-designed interdisciplinary supportive care program, compared with a waitlist control (WLC), on HRQoL and biopsychosocial outcomes in people with a diagnosis of endometriosis. Methods and analysis A hybrid type 1 effectiveness and implementation randomised controlled trial (RCT) will be conducted. Eligible participants will be randomly allocated to either the CodeEndo program (n=176) or WLC group (n=176) for 8 weeks. The primary outcome will be HRQoL, and secondary outcomes will include psychological symptoms (anxiety, depression, stress), self-efficacy, menstrual, bladder and gastrointestinal symptoms, pain, fatigue, sleep, exercise, diet, symptom bothersomeness and physical and psychological well-being, measured at 8 weeks post-randomisation (T2) and 6-month follow-up (T3). Cost-effectiveness will also be examined. Longitudinal qualitative individual interviews (up to n=40) will be conducted with participants who complete the CodeEndo program to explore benefits, barriers and facilitators of ongoing use. Additionally, the CodeEndo program will undergo evaluation by a group of endometriosis healthcare providers, who will assess potential barriers and facilitators to its real-world implementation. Various process evaluation strategies will also be measured to inform future implementation. Data analyses will incorporate mixed-effects regression models on an intention-to-treat basis, cost-consequences and cost-utility, dietary and qualitative thematic analysis. Ethics and dissemination This protocol received ethics approval from Deakin University Research Ethics Committee (DUREC Ref: 2024-157). Dissemination is expected to include peer-reviewed journal articles, reports, conference presentations as well as websites or social media platforms of relevant chronic pain organisations. Participants will be sent a summary of trial results. Trial registration number ACTRN12623000598684p.
Open AccessCo-designing, evaluating and implementing online supportive care for endometriosis in Australia: study protocol for the hybrid type 1 effectiveness, cost-effectiveness and implementation randomised controlled trial of the CodeEndo program
Introduction Endometriosis is a chronic condition affecting up to 11% of people presumed female at birth by the age of 44 years, characterised by the growth of tissue similar to the lining of the uterus on other organs. Endometriosis significantly impacts health-related quality of life (HRQoL) and imposes a substantial burden on both individuals and the healthcare system. International guidelines recommend the interdisciplinary management of endometriosis due to its significant biopsychosocial burden; however, research aimed at exploring psychological approaches for endometriosis is limited. This trial aims to evaluate the effectiveness of CodeEndo, an online co-designed interdisciplinary supportive care program, compared with a waitlist control (WLC), on HRQoL and biopsychosocial outcomes in people with a diagnosis of endometriosis. Methods and analysis A hybrid type 1 effectiveness and implementation randomised controlled trial (RCT) will be conducted. Eligible participants will be randomly allocated to either the CodeEndo program (n=176) or WLC group (n=176) for 8 weeks. The primary outcome will be HRQoL, and secondary outcomes will include psychological symptoms (anxiety, depression, stress), self-efficacy, menstrual, bladder and gastrointestinal symptoms, pain, fatigue, sleep, exercise, diet, symptom bothersomeness and physical and psychological well-being, measured at 8 weeks post-randomisation (T2) and 6-month follow-up (T3). Cost-effectiveness will also be examined. Longitudinal qualitative individual interviews (up to n=40) will be conducted with participants who complete the CodeEndo program to explore benefits, barriers and facilitators of ongoing use. Additionally, the CodeEndo program will undergo evaluation by a group of endometriosis healthcare providers, who will assess potential barriers and facilitators to its real-world implementation. Various process evaluation strategies will also be measured to inform future implementation. Data analyses will incorporate mixed-effects regression models on an intention-to-treat basis, cost-consequences and cost-utility, dietary and qualitative thematic analysis. Ethics and dissemination This protocol received ethics approval from Deakin University Research Ethics Committee (DUREC Ref: 2024-157). Dissemination is expected to include peer-reviewed journal articles, reports, conference presentations as well as websites or social media platforms of relevant chronic pain organisations. Participants will be sent a summary of trial results. Trial registration number ACTRN12623000598684p.
- Open Access
Impact of employment support in different work environments on individuals with intellectual disability and their families from their own perspectives: protocol for a systematic review of qualitative evidence
Introduction People with intellectual disability experience lower levels of employment than those with other disabilities and those without disability, and typically require support services to access and maintain employment. Reviews on employment support often focus on the perspectives of providers and employers, meaning that, thus far, the perspectives of people with intellectual disability and their family members have not been collated and synthesised. This review will address this evidence gap. Methods and analysis Six databases (CINAHL, EconLit, EMBASE, Medline Complete, PsychINFO, Web of Science) will be comprehensively searched for the last 20 years to identify English-language, peer-reviewed publications including primary qualitative data. Search results will be independently screened by three reviewers (CP, NM, SF). Backwards and forwards citation tracing will be used to identify any additional literature not found by the searches. A narrative summary of the included studies will be provided. Study characteristics such as research focus, design, setting and findings will be independently extracted by one reviewer, checked by a second. Methodological quality will be independently evaluated by two reviewers using the Critical Appraisal Skills Programme Qualitative Studies Checklist. Findings from the studies will be collated using thematic synthesis and a realist approach. Any disagreement during the review process will be resolved by a third reviewer. Ethics and dissemination Ethics approval is not required to conduct the planned systematic review of peer-reviewed, published articles because the research does not involve human participants. Findings will be published in a peer-reviewed journal, presented at leading disability conferences and disseminated via website postings and social media channels. PROSPERO registration number CRD42024615393.
Open AccessImpact of employment support in different work environments on individuals with intellectual disability and their families from their own perspectives: protocol for a systematic review of qualitative evidence
Introduction People with intellectual disability experience lower levels of employment than those with other disabilities and those without disability, and typically require support services to access and maintain employment. Reviews on employment support often focus on the perspectives of providers and employers, meaning that, thus far, the perspectives of people with intellectual disability and their family members have not been collated and synthesised. This review will address this evidence gap. Methods and analysis Six databases (CINAHL, EconLit, EMBASE, Medline Complete, PsychINFO, Web of Science) will be comprehensively searched for the last 20 years to identify English-language, peer-reviewed publications including primary qualitative data. Search results will be independently screened by three reviewers (CP, NM, SF). Backwards and forwards citation tracing will be used to identify any additional literature not found by the searches. A narrative summary of the included studies will be provided. Study characteristics such as research focus, design, setting and findings will be independently extracted by one reviewer, checked by a second. Methodological quality will be independently evaluated by two reviewers using the Critical Appraisal Skills Programme Qualitative Studies Checklist. Findings from the studies will be collated using thematic synthesis and a realist approach. Any disagreement during the review process will be resolved by a third reviewer. Ethics and dissemination Ethics approval is not required to conduct the planned systematic review of peer-reviewed, published articles because the research does not involve human participants. Findings will be published in a peer-reviewed journal, presented at leading disability conferences and disseminated via website postings and social media channels. PROSPERO registration number CRD42024615393.