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2. Group online EMDR for breastfeeding trauma recovery

Author

Black, Rachel, Sinclair, Marlene, McCullough, Julie, and Miller, Paul William

Subjects
Breastfeeding PTSD, Breastfeeding post traumatic stress disorder, Perinatal, G-TEP, Social media, Eye movement desensitisation and reprocessing
Abstract

Background: This research explored the phenomena of breastfeeding trauma and sought to assess the feasibility and acceptability of an online group psychotherapy intervention using Eye Movement Desensitisation and Reprocessing Therapy (EMDR/GTEP). Women who have a negative breastfeeding experience often describe how the impact of the memories have a lasting effect on their mental health. They describe feeling guilt and shame and often associate their experience with a sense of failure as a mother. Aim: The aim of this research was to explore the feasibility and acceptability of an online group EMDR (G-TEP protocol) intervention incorporating a social media component for reducing breastfeeding trauma. Methods: The research design was quasi-experimental using mixed methods with sequential phases. Phase one involved a systematic review to assess the effectiveness of online psychotherapy interventions for the treatment of perinatal mental health disorders. Phase two consisted of a cross-sectional survey to test the psychometric properties of the Existential Breastfeeding Difficulties Scale (ExBreastS), in women who had ever breastfed, as an instrument to screen for Breastfeeding Post Traumatic Stress Disorder (BF-PTSD). Phases three and four encompassed an explanatory sequential design to explore the feasibility and acceptability of the online EMDR intervention. This involved the design and implementation of an online EMDR Group Traumatic Episode Protocol (G-TEP) intervention with a social media component for breastfeeding trauma recovery and a qualitative focus group to explore participant's experience of the intervention. Social Cognitive Theory was the theoretical framework underpinning the research. Results: The results of the systematic review demonstrated that online psychotherapy interventions for the treatment of perinatal depression and anxiety were effective in reducing symptomatology. The findings highlighted gaps in the current literature for interventions for other perinatal mental health disorders and interventions utilising online EMDR therapy in the perinatal period. The results of the psychometric testing of the ExBreastS demonstrated the presence of BF-PTSD in 7% of the sample which consisted of 1074 women and the analysis supported the use of ExBreastS as a valid and reliable instrument for screening for BF-PTSD (AUC = 0.79 (95% CI0.74-0.85)). The online feasibility study included five participants and demonstrated the potential of the EMDR/G-TEP intervention in reducing BF-PTSD and subjective distress (up to a 32% reduction in BF-PTSD scores). Furthermore, the intervention saw increases in breastfeeding self-efficacy (up to 62% increase in breastfeeding self-efficacy scores) and evidence of positive breastfeeding behavioural change. All study participants remained in the study for the duration with no attrition. Findings from the participant evaluation revealed the participant's found the intervention to be helpful in aiding them to heal from their trauma and highlighted the acceptability of the online intervention. The social media, peer-support-group was found to be a helpful way to communicate with the research team. However, participants described a lack of interaction and suggested the addition of a smaller instant messaging group chat could have been more engaging. Conclusions: The outcomes provide positive data indicating that the novel online EMDR/GTEP intervention can facilitate healing from breastfeeding trauma. To facilitate improved social connections an additional instant messaging group should be considered. The ExBreastS is a valid and reliable instrument for measuring breastfeeding trauma.

Published
2023

6. Global, regional, and national burden of rheumatoid arthritis, 1990–2020, and projections to 2050: a systematic analysis of the Global Burden of Disease Study 2021

Author

Black, Rachel J, Cross, Marita, Haile, Lydia M, Culbreth, Garland T, Steinmetz, Jaimie D, Hagins, Hailey, Kopec, Jacek A, Brooks, Peter M, Woolf, Anthony D, Ong, Kanyin Liane, Kopansky-Giles, Deborah R, Dreinhoefer, Karsten E, Betteridge, Neil, Aali, Amirali, Abbasifard, Mitra, Abbasi-Kangevari, Mohsen, Abdurehman, Ame Mehadi, Abedi, Aidin, Abidi, Hassan, Aboagye, Richard Gyan, Abolhassani, Hassan, Abu-Gharbieh, Eman, Abu-Zaid, Ahmed, Adamu, Kidist, Addo, Isaac Yeboah, Adesina, Miracle Ayomikun, Adnani, Qorinah Estiningtyas Sakilah, Afzal, Muhammad Sohail, Ahmed, Ayman, Aithala, Janardhana P, Akhlaghdoust, Meisam, Alemayehu, Astawus, Alvand, Saba, Alvis-Zakzuk, Nelson J, Amu, Hubert, Antony, Benny, Arabloo, Jalal, Aravkin, Aleksandr Y, Arulappan, Judie, Ashraf, Tahira, Athari, Seyyed Shamsadin, Azadnajafabad, Sina, Badawi, Alaa, Baghcheghi, Nayereh, Baig, Atif Amin, Balta, Asaminew Birhanu, Banach, Maciej, Banik, Palash Chandra, Barrow, Amadou, Bashiri, Azadeh, Bearne, Lindsay M, Bekele, Alehegn, Bensenor, Isabela M, Berhie, Alemshet Yirga, Bhagavathula, Akshaya Srikanth, Bhardwaj, Pankaj, Bhat, Ajay Nagesh, Bhojaraja, Vijayalakshmi S, Bitaraf, Saeid, Bodicha, Belay Boda Abule, Botelho, João Silva, Briggs, Andrew M, Buchbinder, Rachelle, Castañeda-Orjuela, Carlos A, Charalampous, Periklis, Chattu, Vijay Kumar, Coberly, Kaleb, Cruz-Martins, Natália, Dadras, Omid, Dai, Xiaochen, de Luca, Katie, Dessalegn, Fikadu Nugusu, Dessie, Gashaw, Dhimal, Meghnath, Digesa, Lankamo Ena, Diress, Mengistie, Doku, Paul Narh, Edinur, Hisham Atan, Ekholuenetale, Michael, Elhadi, Muhammed, El-Sherbiny, Yasser Mohamed, Etaee, Farshid, Ezzeddini, Rana, Faghani, Shahriar, Filip, Irina, Fischer, Florian, Fukumoto, Takeshi, Ganesan, Balasankar, Gebremichael, Mathewos Alemu, Gerema, Urge, Getachew, Motuma Erena, Ghashghaee, Ahmad, Gill, Tiffany K, Gupta, Bhawna, Gupta, Sapna, Gupta, Veer Bala, Gupta, Vivek Kumar, Halwani, Rabih, Hannan, Md Abdul, Haque, Shafiul, Harlianto, Netanja I, Harorani, Mehdi, Hasaballah, Ahmed I, Hassen, Mohammed Bheser, Hay, Simon I, Hayat, Khezar, Heidari, Golnaz, Hezam, Kamal, Hill, Catherine L, Hiraike, Yuta, Horita, Nobuyuki, Hoveidaei, Amir Human, Hsiao, Alexander Kevin, Hsieh, Evelyn, Hussain, Salman, Iavicoli, Ivo, Ilic, Irena M, Islam, Sheikh Mohammed Shariful, Ismail, Nahlah Elkudssiah, Iwagami, Masao, Jakovljevic, Mihajlo, Jani, Chinmay T, Jeganathan, Jayakumar, Joseph, Nitin, Kadashetti, Vidya, Kandel, Himal, Kanko, Tesfaye K, Karaye, Ibraheem M, Khajuria, Himanshu, Khan, Md Jobair, Khan, Moien AB, Khanali, Javad, Khatatbeh, Moawiah Mohammad, Khubchandani, Jagdish, Kim, Yun Jin, Kisa, Adnan, Kolahi, Ali-Asghar, Kompani, Farzad, Koohestani, Hamid Reza, Koyanagi, Ai, Krishan, Kewal, Kuddus, Mohammed, Kumar, Narinder, Kuttikkattu, Ambily, Larijani, Bagher, Lim, Stephen S, Lo, Justin, Machado, Vanessa Sintra, Mahajan, Preetam Bhalchandra, Majeed, Azeem, Malakan Rad, Elaheh, Malik, Ahmad Azam, Mansournia, Mohammad Ali, Mathews, Elezebeth, Mendes, José João, Mentis, Alexios-Fotios A, Mesregah, Mohamed Kamal, Mestrovic, Tomislav, Mirghaderi, Seyed Peyman, Mirrakhimov, Erkin M, Misganaw, Awoke, Mohamadkhani, Ashraf, Mohammed, Shafiu, Mokdad, Ali H, Moniruzzaman, Md, Montasir, Ahmed Al, Mulu, Getaneh Baye, Murillo-Zamora, Efrén, Murray, Christopher J L, Mustafa, Ghulam, Naghavi, Mohsen, Nair, Tapas Sadasivan, Naqvi, Atta Abbas, Natto, Zuhair S, Nayak, Biswa Prakash, Neupane, Subas, Nguyen, Cuong Tat, Niazi, Robina Khan, Nzoputam, Ogochukwu Janet, Oh, In-Hwan, Okati-Aliabad, Hassan, Okonji, Osaretin Christabel, Olufadewa, Isaac Iyinoluwa, Owolabi, Mayowa O, Pacheco-Barrios, Kevin, Padubidri, Jagadish Rao, Patel, Jay, Pathan, Aslam Ramjan, Pawar, Shrikant, Pedersini, Paolo, Perianayagam, Arokiasamy, Petcu, Ionela-Roxana, Qattea, Ibrahim, Radfar, Amir, Rafiei, Alireza, Rahman, Mohammad Hifz Ur, Rahmanian, Vahid, Rashedi, Vahid, Rashidi, Mohammad-Mahdi, Ratan, Zubair Ahmed, Rawaf, Salman, Razeghinia, Mohammad Sadegh, Redwan, Elrashdy Moustafa Mohamed, Renzaho, Andre M N, Rezaei, Nazila, Rezaei, Nima, Riad, Abanoub, Saad, Aly M A, Saddik, Basema, Saeed, Umar, Safary, Azam, Sahebazzamani, Maryam, Sahebkar, Amirhossein, Sahoo, Harihar, Salek Farrokhi, Amir, Saqib, Muhammad Arif Nadeem, Seylani, Allen, Shahabi, Saeed, Shaikh, Masood Ali, Shashamo, Bereket Beyene, Shetty, Adithi, Shetty, Jeevan K, Shigematsu, Mika, Shivarov, Velizar, Shobeiri, Parnian, Sibhat, Migbar Mekonnen, Sinaei, Ehsan, Singh, Ambrish, Singh, Jasvinder A, Singh, Paramdeep, Singh, Surjit, Siraj, Md Shahjahan, Skryabina, Anna Aleksandrovna, Slater, Helen, Smith, Amanda E, Solomon, Yonatan, Soltani-Zangbar, Mohammad Sadegh, Tabish, Mohammad, Tan, Ker-Kan, Tat, Nathan Y, Tehrani-Banihashemi, Arash, Tharwat, Samar, Tovani-Palone, Marcos Roberto, Tusa, Biruk Shalmeno, Valadan Tahbaz, Sahel, Valdez, Pascual R, Valizadeh, Rohollah, Vaziri, Siavash, Vollset, Stein Emil, Wu, Ai-Min, Yada, Dereje Y, Yehualashet, Sisay Shewasinad, Yonemoto, Naohiro, You, Yuyi, Yunusa, Ismaeel, Zangiabadian, Moein, Zare, Iman, Zarrintan, Armin, Zhang, Zhi-Jiang, Zhong, Chenwen, Zoladl, Mohammad, Vos, Theo, and March, Lyn M

Published
2023
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12. The associations between poorer pain-related health status and increased hospitalisations and excess mortality in patients with rheumatoid arthritis (RA): a prospective cohort analysis using the Australian Rheumatology Association Database (ARAD).

Author

Huai Leng Pisaniello, Lester, Susan Elizabeth, Russell, Oscar, Black, Rachel, Joanna Tieu, Richards, Bethan, Barrett, Claire, Lassere, Marissa, March, Lyn, Buchbinder, Rachelle, Hill, Catherine, and Whittle, Samuel Lawrance

Published
2024
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13. The associations between poorer pain-related health status and increased hospitalisations and excess mortality in patients with rheumatoid arthritis (RA): a prospective cohort analysis using the Australian Rheumatology Association Database (ARAD)

Author

Pisaniello, Huai Leng, primary, Lester, Susan Elizabeth, additional, Russell, Oscar, additional, Black, Rachel, additional, Tieu, Joanna, additional, Richards, Bethan, additional, Barrett, Claire, additional, Lassere, Marissa, additional, March, Lyn, additional, Buchbinder, Rachelle, additional, Hill, Catherine, additional, and Whittle, Samuel Lawrance, additional

Published
2024
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17. Strengthening Ties: The Case for Building a Social Policy Centered on Families

Author

New America, Longman, Phillip, Mundy, Liza, Black, Rachel, Bornfreund, Laura, Byrum, Greta, Cramer, Reid, Gangadharan, Seeta Peña, Guernsey, Lisa, Lieberman, Abbie, Lynn, Barry, and McCarthy, Mary Alice

Abstract

Most of the social and economic policies in the U.S. do not explicitly address or take into account the growing importance of families as sources of human capital and determinants of individual success. Even the small subsets of programs that we conventionally frame as part of "family policy" are often based on long-defunct assumptions about the actual structure of modern families. This report calls for new frameworks to help American families navigate today's challenges. Outdated and siloed social policies fail to help families thrive and prosper in the face of new economic, demographic, and technological changes. The authors view the problems facing the family as matters of political economy that humans and human institutions have the power to change. The challenge of framing effective social policy to meet the needs of families is complicated by a series of enormously important megatrends. Some of the trends are reshaping how families live together, participate in the economy, and interact with the the world around them include: (1) Changing role of women--and men--in the workplace; (2) Rise of single parenthood; (3) Rising cost of living for families; (4) Generational downward mobility; (5) Decline in the number and quality of jobs; (6) Decline in family business; and (7) Pressures of digital technologies. In designing and implementing social programs, policymakers often fail to account for the enduring impact of the family, its fast-changing composition, or the pressures created by economic and technological change. Policy "silos" prevent the strategic coordination of support systems and social programs, which range from child care to early and higher education to workforce and small business development to ensuring access to digital technologies. It is time to correct this failure to adapt--to think of innovative ways to strengthen families and help them thrive and prosper. In response to the new set of realities and large-scale trends, policymakers must develop new ways to support families across generations. To do so effectively will require bringing together expertise from many policy realms. New frameworks are needed for analyzing the increasingly critical role of the family in modern America, examining the influence of technology on families and social networks, and exploring ideas for policies and programs that will more effectively support the modern American family in all its diversity. This report makes the case for rethinking social policy and explains New America's approach to building a new family-centered policy framework. [Programs at New America taking part in this initiative include Asset Building, Breadwinning and Caregiving, Education Policy, the Markets Enterprise and Resiliency Initiative, and the Open Technology Institute.]

Published
2015

19. The OMERACT Core Domain Set for Outcome Measures for Clinical Trials in Polymyalgia Rheumatica.

Author

Mackie, Sarah, Twohig, Helen, Neill, Lorna, Harrison, Eileen, Shea, Beverley, Black, Rachel, Kermani, Tanaz, Merkel, Peter, Mallen, Christian, Buttgereit, Frank, Mukhtyar, Chetan, Simon, Lee, and Hill, Catherine

Subjects
OMERACT, OUTCOMES, POLYMYALGIA RHEUMATICA, Antirheumatic Agents, Clinical Trials as Topic, Delphi Technique, Humans, Outcome Assessment, Health Care, Polymyalgia Rheumatica, Quality of Life, Research Design
Abstract

OBJECTIVE: To inform development of a core domain set for outcome measures for clinical trials in polymyalgia rheumatica (PMR), we conducted patient consultations, a systematic review, a Delphi study, and 2 qualitative studies. METHODS: Domains identified by 70% or more of physicians and/or patients in the Delphi study were selected. The conceptual framework derived from the 2 qualitative research studies helped inform the meaning of each domain and its relationship to the others. The draft core domain set was refined by further discussion with patients and physicians who had participated in the Delphi study. At the Outcome Measures in Rheumatology (OMERACT) 2016, the domains were discussed and prioritized by 8 breakout groups. Formal voting took place at the end of the workshop and in the final plenary. RESULTS: Ninety-three percent of voters in the final plenary agreed that the inner core of domains considered mandatory for clinical trials of PMR should consist the following: laboratory markers of systemic inflammation, pain, stiffness, and physical function. Patients global and fatigue were considered important but not mandatory (outer core). The research agenda included psychological impact, weakness, physical activity, participation, sleep, imaging, and health-related quality of life. CONCLUSION: This core domain set was considered sufficiently well-defined that the next step will be to apply the OMERACT Filter 2.0 Instrument Selection Algorithm to select candidate instruments for a subsequent deeper dive into the data. This will allow instruments to be mapped onto each of our core domains to derive a core outcome set for PMR.

Published
2017

20. The challenge to understand the zoo of particle transport regimes during resonant wave-particle interactions for given survey-mode wave spectra

Author

Allanson, Oliver, Ma, Donglai, Osmane, Adnane, Albert, Jay M., Bortnik, Jacob, Watt, Clare E. J., Chapman, Sandra C., Spencer, Joseph, Ratliff, Daniel J., Meredith, Nigel P., Elsden, Thomas, Neukirch, Thomas, Hartley, David P., Black, Rachel, Watkins, Nicholas W., Elvidge, Sean, Allanson, Oliver, Ma, Donglai, Osmane, Adnane, Albert, Jay M., Bortnik, Jacob, Watt, Clare E. J., Chapman, Sandra C., Spencer, Joseph, Ratliff, Daniel J., Meredith, Nigel P., Elsden, Thomas, Neukirch, Thomas, Hartley, David P., Black, Rachel, Watkins, Nicholas W., and Elvidge, Sean

Abstract

Quasilinear theories have been shown to well describe a range of transport phenomena in magnetospheric, space, astrophysical and laboratory plasma “weak turbulence” scenarios. It is well known that the resonant diffusion quasilinear theory for the case of a uniform background field may formally describe particle dynamics when the electromagnetic wave amplitude and growth rates are sufficiently “small”, and the bandwidth is sufficiently “large”. However, it is important to note that for a given wave spectrum that would be expected to give rise to quasilinear transport, the quasilinear theory may indeed apply for given range of resonant pitch-angles and energies, but may not apply for some smaller, or larger, values of resonant pitch-angle and energy. That is to say that the applicability of the quasilinear theory can be pitch-angle dependent, even in the case of a uniform background magnetic field. If indeed the quasilinear theory does apply, the motion of particles with different pitch-angles are still characterised by different timescales. Using a high-performance test-particle code, we present a detailed analysis of the applicability of quasilinear theory to a range of different wave spectra that would otherwise “appear quasilinear” if presented by e.g., satellite survey-mode data. We present these analyses as a function of wave amplitude, wave coherence and resonant particle velocities (energies and pitch-angles), and contextualise the results using theory of resonant overlap and small amplitude criteria. In doing so, we identify and classify five different transport regimes that are a function of particle pitch-angle. The results in our paper demonstrate that there can be a significant variety of particle responses (as a function of pitch-angle) for very similar looking survey-mode electromagnetic wave products, even if they appear to satisfy all appropriate quasilinear criteria. In recent years there have been a sequence of very interesting and important result

Published
2024

28. Understanding the Nature of Non-Profit Incubators with Other Sector Incubators in the Founding of Social Change Organisations by Social Entrepreneurs.

Author

Valero, Jesus N., Saitgalina, Marina, and Black, Rachel A.

Subjects
BUSINESSPEOPLE, NONPROFIT organizations, SOCIAL change, NONPROFIT sector, TECHNOLOGICAL innovations
Abstract

Incubators have been studied extensively in the private sector, such as those that engage in technological innovation or growing small businesses. The scholarship has not sufficiently explored the efforts of incubators in the non-profit sector that help create programs supporting, mentoring, and cultivating social entrepreneurs. There are numerous documented cases of non-profit organisations establishing initiatives that help motivated entrepreneurs achieve social change; but research is lagging in developing a systematic understanding of these effort's impact, and the factors associated with the success of non-profit initiatives that support social entrepreneurs. This paper seeks to understand the nature of non-profit organisations that support and cultivate social entrepreneurs. We rely on a unique data set from survey research on non-profit initiatives across three U.S. Census Regions. Results indicate that the characteristics of non-profit organisations vary in their reliance on a variety of revenue resources and governance arrangements, as well as in their diverse policy focus. They also provide an extensive and diverse set of services that supports the ideas and efforts of social entrepreneurs. [ABSTRACT FROM AUTHOR]

Published
2024
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29. The challenge to understand the zoo of particle transport regimes during resonant wave-particle interactions for given survey-mode wave spectra

Author

Allanson, Oliver, primary, Ma, Donglai, additional, Osmane, Adnane, additional, Albert, Jay M., additional, Bortnik, Jacob, additional, Watt, Clare E. J., additional, Chapman, Sandra C., additional, Spencer, Joseph, additional, Ratliff, Daniel J., additional, Meredith, Nigel P., additional, Elsden, Thomas, additional, Neukirch, Thomas, additional, Hartley, David P., additional, Black, Rachel, additional, Watkins, Nicholas W., additional, and Elvidge, Sean, additional

Published
2024
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32. Overcoming Obstacles to College Attendance and Degree Completion: Toward a Pro-College Savings Agenda. Asset Building Program

Author

New America Foundation, Black, Rachel, and Huelsman, Mark

Abstract

The rise in student loan debt has directed critical attention to the growing pace of college costs as well as the reliance on loans to finance those costs. For graduates entering the workforce in recent years, many are finding that they are unable to find the type of job they thought they were securing when they received their degree, if they are able to find a job at all. Consequently, more loans are going unpaid and student loan debt has become the only class of consumer debt where defaults are increasing. While debt is a clear indicator of the flaws in the current way that postsecondary education is financed, a less visible consequence is the number of students who never make it to college because they perceive it as financially out of reach or the attrition of students who cannot afford to persist. Students need a way to finance college that helps them build the expectation that college is an attainable goal and the resources to make it a reality without compromising their future financial well-being. This paper will examine current trends in college cost and college financing, the role of savings in increasing postsecondary access and completion, and present a framework for developing a pro-college savings agenda and specific policy recommendations to overcome obstacles currently faces by low-income students. (Contains 1 table, 73 footnotes and 52 endnotes.)

Published
2012

33. Living with dying children : the suffering of parents

Author

Black, Rachel Jane

Subjects
155.973085, H Social Sciences
Abstract

Although the relief of suffering and emotional support are fundamental to children's palliative care, their empirical study has been limited. The research questions for this study address three areas: the lived experience of parents of dying children; how other people's responses shape the parents' lived experience; and the place of emotion and suffering in the parents' lived experience. Implementing a qualitative strategy, a collective case study was undertaken in a children's hospice in England, with fieldwork completed between March 2008 and September 2009. Data was collected with nine parents using a range of tools including a focus group, participant observation, documentary observation and individual interviews. Within-case and cross-case modified grounded theory analysis facilitated clarification of emerging themes whilst preserving individual parent voices. The findings show that parents of dying children had existential issues put at stake through the emotional experience of parenting a dying child; these included their identity, place in society, time, and relationships. Such losses could constitute suffering, but in addition they limited the parents' interaction with society so that over time both the 'quantity' and 'quality' of intersubjectivity reduced. The parents perceived that other people tended not to legitimate their lived experience. Emotion was an important influence in this process. The parents of dying children managed their emotions, particularly those of a negative nature, in everyday life and when using hospice services. As a result they expressed somewhat inauthentic accounts of their felt experience, reframed according to perceived feeling rules. This also reduced intersubjectivity and supported the delegitimation of the parental experience. In conclusion, delegitimation of the parental experience stems from feeling rules which are derived from day to day interactions and contemporary social policy. Suffering may be prevented if individual experience is legitimated through improved intersubjectivity. A key factor for this is effective communication through which observers engage with the felt emotion of the suffering individual.

Published
2011
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34. Trajectories of self-reported pain-related health outcomes and longitudinal effects on medication use in rheumatoid arthritis: a prospective cohort analysis using the Australian Rheumatology Association Database (ARAD)

Author

Pisaniello, Huai Leng, primary, Lester, Susan, additional, Russell, Oscar, additional, Black, Rachel, additional, Tieu, Joanna, additional, Richards, Bethan, additional, Barrett, Claire, additional, Lassere, Marissa, additional, March, Lyn, additional, Buchbinder, Rachelle, additional, Whittle, Samuel L, additional, and Hill, Catherine L, additional

Published
2023
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38. Mortality estimates and excess mortality in rheumatoid arthritis.

Author

Black, Rachel J, Lester, Susan, Tieu, Joanna, Sinnathurai, Premarani, Barrett, Claire, Buchbinder, Rachelle, Lassere, Marissa, March, Lyn, Proudman, Susanna M, and Hill, Catherine L

Subjects
*SURVIVAL, *CAUSES of death, *RESPIRATORY diseases, *PNEUMONIA, *REPORTING of diseases, *NOSOLOGY, *CONFIDENCE intervals, *AGE distribution, *CARDIOVASCULAR diseases, *HOSPITAL mortality, *COMPARATIVE studies, *SEX distribution, *RHEUMATOID arthritis, *DESCRIPTIVE statistics, *RESEARCH funding, *DEATH, *LONG-term health care, *EVALUATION
Abstract

Objectives To determine long-term (20 year) survival in RA patients enrolled in the Australian Rheumatology Association Database (ARAD). Methods ARAD patients with RA and data linkage consent who were diagnosed from 1995 onwards were included. Death data were obtained through linkage to the Australian National Death Index. Results were compared with age-, gender- and calendar year–matched Australian population mortality rates. Analysis included both the standardized mortality ratio (SMR) and relative survival models. Restricted mean survival time (RMST) at 20 years was calculated as a measure of life lost. Cause-specific SMRs (CS-SMRs) were estimated for International Classification of Diseases, Tenth Revision cause of death classifications. Results A total of 1895 RA patients were included; 74% were female, baseline median age 50 years (interquartile range 41–58), with 204 deaths. There was no increase in mortality over the first 10 years of follow up, but at 20 years the SMR was 1.49 (95% CI 1.30, 1.71) and the relative survival was 94% (95% CI 91, 97). The difference between observed (18.41 years) and expected (18.68 years) RMST was 4 months. Respiratory conditions were an important underlying cause of death in RA, primarily attributable to pneumonia [CS-SMR 5.2 (95% CI 2.3, 10.3)] and interstitial lung disease [CS-SMR 7.6 (95% CI 3.0, 14.7)], however, coronary heart disease [CS-SMR 0.82 (95% CI 0.42, 1.4)] and neoplasms [CS-SMR 1.2 (95% CI 0.89, 1.5)] were not. Conclusion Mortality risk in this RA cohort accrues over time and is moderately increased at 20 years of follow-up. Respiratory diseases may have supplanted cardiovascular diseases as a major contributor to this mortality gap. [ABSTRACT FROM AUTHOR]

Published
2023
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39. Measuring the impact of steroid therapy on health-related quality of life in patients with rheumatic diseases: international development of a glucocorticoid treatment–specific patient-reported outcome measure.

Author

Bridgewater, Susan, Shepherd, Michael A, Dawson, Jill, Richards, Pamela, Silverthorne, Christine, Ndosi, Mwidimi, Almeida, Celia, Black, Rachel J, Cheah, Jonathan T L, Dures, Emma, Ghosh, Nilasha, Hoon, Elizabeth A, Lyne, Suellen, Navarro-Millan, Iris, Pearce-Fisher, Diyu, Ruediger, Carlee, Tieu, Joanna, Yip, Kevin, Mackie, Sarah L, and Goodman, Susan

Subjects
DRUG therapy for rheumatism, GLUCOCORTICOIDS, RESEARCH methodology, HEALTH outcome assessment, INTERVIEWING, TREATMENT effectiveness, QUALITATIVE research, CONCEPTUAL structures, COMPARATIVE studies, QUALITY of life, QUESTIONNAIRES, DESCRIPTIVE statistics, RESEARCH funding, JUDGMENT sampling, THEMATIC analysis
Abstract

Objectives Glucocorticoids (GCs) ('steroids') are used to treat rheumatic diseases but adverse effects are common. We aimed to explore the impact of GC therapy on health-related quality of life (HRQoL), to inform the development of a treatment-specific patient-reported outcome measure (PROM) for use in clinical trials and practice. Methods Semi-structured qualitative interviews were conducted with patients from the UK, USA and Australia, treated for a rheumatic condition with GCs in the last 2 years. Purposive sampling was used to select participants with a range of demographic and disease features. An initial conceptual framework informed interview prompts and cues. Interviews elicited GC-related physical and psychological symptoms and salient aspects of HRQoL in relation to GC therapy. Interview data were analysed inductively to develop initial individual themes and domains. Candidate questionnaire items were developed and refined. Results Sixty semi-structured qualitative interviews were conducted (UK n  = 34, USA n  = 10, Australia n  = 16). The mean age was 58 years; 39/60 were female; and 18 rheumatic diseases were represented. Some 126 individual themes were identified and organized into six domains: physical symptoms; psychological symptoms; psychological impact of steroids; impact of steroids on participation; impact of steroids on relationships; and benefits of steroids. Candidate questionnaire items were tested and refined by piloting with patient research partners, iterative rounds of cognitive interviews and linguistic translatability assessment, informing a draft questionnaire. Conclusion We describe an international qualitative study to develop candidate items for a treatment-specific PROM for patients with rheumatic diseases. A future survey will enable the validation of a final version of the PROM. [ABSTRACT FROM AUTHOR]

Published
2023
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43. Slow change deafness replication at Walsh University

Author

Miller, Gabriel, Wayand, Joseph, Vanstavel, Julie, Gerig, Natalie, Lenci Williams, McMillan, Kiara, Wallace, Mary, Wolff, Chiara, Flickinger, Katherine, Mark, Anna, Bailey, Drew, Hopkins, Victoria, Dunkle, Rebecca, Kaytlyn Tokar, Bamossa, Razan, and Black, Rachel

Subjects
Social and Behavioral Sciences
Abstract

A replication of experiment 1 from Neuhoff et al. (2015). We added an additional comparison between rising and falling formant (in addition to rising / falling pitch).

Published
2023
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44. Method

Author

Black, Rachel, Mark, Anna, Wayand, Joseph, Wolff, Chiara, and Bailey, Drew

Published
2023
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45. Hypothesis

Author

Black, Rachel, Bailey, Drew, Mark, Anna, Wolff, Chiara, and Wayand, Joseph

Published
2023
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46. Method

Author

Wayand, Joseph, Wolff, Chiara, Bailey, Drew, Black, Rachel, and Mark, Anna

Published
2023
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