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  <title>BURA Community:</title>
  <link rel="alternate" href="http://bura.brunel.ac.uk/handle/2438/8616" />
  <subtitle />
  <id>http://bura.brunel.ac.uk/handle/2438/8616</id>
  <updated>2026-05-16T07:18:02Z</updated>
  <dc:date>2026-05-16T07:18:02Z</dc:date>
  <entry>
    <title>Development of S.Tool: An electronic diary for assessing bowel symptoms after rectal cancer surgery</title>
    <link rel="alternate" href="http://bura.brunel.ac.uk/handle/2438/33273" />
    <author>
      <name>Lauwereins, L</name>
    </author>
    <author>
      <name>D'Hoore, A</name>
    </author>
    <author>
      <name>Coeckelberghs, E</name>
    </author>
    <author>
      <name>Wolthuis, A</name>
    </author>
    <author>
      <name>Bislenghi, G</name>
    </author>
    <author>
      <name>Haustermans, K</name>
    </author>
    <author>
      <name>Rasschaert, G</name>
    </author>
    <author>
      <name>Dekervel, J</name>
    </author>
    <author>
      <name>Debrun, L</name>
    </author>
    <author>
      <name>Castro, EM</name>
    </author>
    <author>
      <name>Devoogdt, N</name>
    </author>
    <author>
      <name>De Groef, A</name>
    </author>
    <author>
      <name>Vanderheyden, H</name>
    </author>
    <author>
      <name>Geraerts, I</name>
    </author>
    <author>
      <name>Abasbassi, M</name>
    </author>
    <author>
      <name>Arnold, D</name>
    </author>
    <author>
      <name>Baert, E</name>
    </author>
    <author>
      <name>Barros, A</name>
    </author>
    <author>
      <name>Bianchi, F</name>
    </author>
    <author>
      <name>Bogaert, M</name>
    </author>
    <author>
      <name>Bulens, P</name>
    </author>
    <author>
      <name>Butt, Y</name>
    </author>
    <author>
      <name>Christensen, P</name>
    </author>
    <author>
      <name>Cihan, G</name>
    </author>
    <author>
      <name>Costiff, H</name>
    </author>
    <author>
      <name>Crispin, B</name>
    </author>
    <author>
      <name>Cucalon, C</name>
    </author>
    <author>
      <name>Cyr, M-P</name>
    </author>
    <author>
      <name>Debets, S</name>
    </author>
    <author>
      <name>Debleu, C</name>
    </author>
    <author>
      <name>Depaifve, Y</name>
    </author>
    <author>
      <name>Desnouck, S</name>
    </author>
    <author>
      <name>Devriendt, S</name>
    </author>
    <author>
      <name>Driesen, N</name>
    </author>
    <author>
      <name>Ferreira, RE</name>
    </author>
    <author>
      <name>Basany, EE</name>
    </author>
    <author>
      <name>Gambacorta, N</name>
    </author>
    <author>
      <name>Gärtner-Tschacher, N</name>
    </author>
    <author>
      <name>Geboes, K</name>
    </author>
    <author>
      <name>Gürsen, C</name>
    </author>
    <author>
      <name>Hoile, E</name>
    </author>
    <author>
      <name>Houben, B</name>
    </author>
    <author>
      <name>Igualada-Martinez, P</name>
    </author>
    <author>
      <name>Johannessen, H</name>
    </author>
    <author>
      <name>Joye, I</name>
    </author>
    <author>
      <name>Juul, T</name>
    </author>
    <author>
      <name>Kalkdijk, J</name>
    </author>
    <author>
      <name>Khera, A</name>
    </author>
    <author>
      <name>Kinross, J</name>
    </author>
    <author>
      <name>Sorensen, GK</name>
    </author>
    <author>
      <name>Komen, N</name>
    </author>
    <author>
      <name>Kossler, T</name>
    </author>
    <author>
      <name>Lefevre, J</name>
    </author>
    <author>
      <name>Lescrauwaet, L</name>
    </author>
    <author>
      <name>Leupe, T</name>
    </author>
    <author>
      <name>Majgaard, M</name>
    </author>
    <author>
      <name>Marinello, F</name>
    </author>
    <author>
      <name>Menconi, C</name>
    </author>
    <author>
      <name>Moretto, R</name>
    </author>
    <author>
      <name>Mørkved, S</name>
    </author>
    <author>
      <name>Nijs, A</name>
    </author>
    <author>
      <name>Stafne, SN</name>
    </author>
    <author>
      <name>Österlund, P</name>
    </author>
    <author>
      <name>Papaconstantinou, I</name>
    </author>
    <author>
      <name>Pape, E</name>
    </author>
    <author>
      <name>Pattyn, P</name>
    </author>
    <author>
      <name>Peters, F</name>
    </author>
    <author>
      <name>Pletinckx, P</name>
    </author>
    <author>
      <name>Poncelet, D</name>
    </author>
    <author>
      <name>Remue, C</name>
    </author>
    <author>
      <name>Ribas, Y</name>
    </author>
    <author>
      <name>Röder, F</name>
    </author>
    <author>
      <name>Roels, S</name>
    </author>
    <author>
      <name>Roenen, J</name>
    </author>
    <author>
      <name>Scalafani, F</name>
    </author>
    <author>
      <name>Sjövall, A</name>
    </author>
    <author>
      <name>Spaas, M</name>
    </author>
    <author>
      <name>Spinelli, A</name>
    </author>
    <author>
      <name>Stellamans, K</name>
    </author>
    <author>
      <name>Tambeur, V</name>
    </author>
    <author>
      <name>Tanis, P</name>
    </author>
    <author>
      <name>Tonarelli, N</name>
    </author>
    <author>
      <name>Trevor, J</name>
    </author>
    <author>
      <name>Van den Broeck, S</name>
    </author>
    <author>
      <name>van den Eynde, M</name>
    </author>
    <author>
      <name>Van Geluwe, B</name>
    </author>
    <author>
      <name>Van Herpe, F</name>
    </author>
    <author>
      <name>Van Ooteghem, G</name>
    </author>
    <author>
      <name>Van Reijn, D</name>
    </author>
    <author>
      <name>Vandessel, I</name>
    </author>
    <author>
      <name>Vanneste, H</name>
    </author>
    <author>
      <name>Vermeulen, H</name>
    </author>
    <author>
      <name>Thaysen, HV</name>
    </author>
    <author>
      <name>Weiss, L</name>
    </author>
    <author>
      <name>Bowel Diary Research group</name>
    </author>
    <id>http://bura.brunel.ac.uk/handle/2438/33273</id>
    <updated>2026-05-14T02:01:23Z</updated>
    <published>2026-03-23T00:00:00Z</published>
    <summary type="text">Title: Development of S.Tool: An electronic diary for assessing bowel symptoms after rectal cancer surgery
Authors: Lauwereins, L; D'Hoore, A; Coeckelberghs, E; Wolthuis, A; Bislenghi, G; Haustermans, K; Rasschaert, G; Dekervel, J; Debrun, L; Castro, EM; Devoogdt, N; De Groef, A; Vanderheyden, H; Geraerts, I; Abasbassi, M; Arnold, D; Baert, E; Barros, A; Bianchi, F; Bogaert, M; Bulens, P; Butt, Y; Christensen, P; Cihan, G; Costiff, H; Crispin, B; Cucalon, C; Cyr, M-P; Debets, S; Debleu, C; Depaifve, Y; Desnouck, S; Devriendt, S; Driesen, N; Ferreira, RE; Basany, EE; Gambacorta, N; Gärtner-Tschacher, N; Geboes, K; Gürsen, C; Hoile, E; Houben, B; Igualada-Martinez, P; Johannessen, H; Joye, I; Juul, T; Kalkdijk, J; Khera, A; Kinross, J; Sorensen, GK; Komen, N; Kossler, T; Lefevre, J; Lescrauwaet, L; Leupe, T; Majgaard, M; Marinello, F; Menconi, C; Moretto, R; Mørkved, S; Nijs, A; Stafne, SN; Österlund, P; Papaconstantinou, I; Pape, E; Pattyn, P; Peters, F; Pletinckx, P; Poncelet, D; Remue, C; Ribas, Y; Röder, F; Roels, S; Roenen, J; Scalafani, F; Sjövall, A; Spaas, M; Spinelli, A; Stellamans, K; Tambeur, V; Tanis, P; Tonarelli, N; Trevor, J; Van den Broeck, S; van den Eynde, M; Van Geluwe, B; Van Herpe, F; Van Ooteghem, G; Van Reijn, D; Vandessel, I; Vanneste, H; Vermeulen, H; Thaysen, HV; Weiss, L; Bowel Diary Research group
Abstract: Introduction: &#xD;
Rectal cancer treatment has improved survival, but postoperative bowel dysfunction, known as Low Anterior Resection Syndrome (LARS), significantly impacts Quality of Life. However, current assessment tools lack granularity to assess all LARS symptoms. Therefore, this study developed a mobile application (S.Tool), designed to be patient-friendly and easy to interpret, tailored to monitor LARS. &#xD;
Materials and methods: &#xD;
This study followed eight phases: 1) literature review, 2) internal expert group, 3) pre-Delphi patient focus group, 4) international Delphi Survey (conducted in two rounds in Dutch and English with five stakeholder-groups including colorectal surgeons, radiation and medical oncologists, pelvic floor physiotherapists, colorectal clinical nurse specialists and patients), 5) post-Delphi patient focus group, 6) consensus meeting, 7) forward-backward translation, and 8) development of the application. Descriptive statistics, percentages and median (range), were used to present the data. &#xD;
Results: &#xD;
A total of 122 participants, including 22 patients, participated in the international Delphi survey. Of these, 103 (84%) completed the first round and 97 (80%) the second round. After the Delphi rounds, 25 items were included in the bowel diary, 10 excluded and 8 discussed in the consensus meeting. Based on feedback from the post-Delphi patient focus group, the consensus meeting decided to include 6 of the 8 discussed items, resulting in 31 items. These guided the development of the S.Tool application. &#xD;
Conclusion: &#xD;
The S.Tool application is an innovative, multidisciplinary bowel diary for assessment and follow-up of patients with LARS. It generates visual summaries shareable with healthcare professionals to support clinical decision-making and personalized care.
Description: Data availability: &#xD;
All data generated or analyzed during this study are included in this article. Further inquiries can be directed to the corresponding authors.; Supplementary data are available online at: https://www.sciencedirect.com/science/article/pii/S0748798326003744?via%3Dihub#appsec1 .; Acknowledgements: &#xD;
The authors are grateful to the patients who participated in the focus groups, the participants of the Delphi Survey (both patients and healthcare staff) and the scientific committee for their contributions to data acquisition.</summary>
    <dc:date>2026-03-23T00:00:00Z</dc:date>
  </entry>
  <entry>
    <title>The minimal important deterioration of the incremental shuttle walk test in chronic obstructive pulmonary disease: a prospective cohort study</title>
    <link rel="alternate" href="http://bura.brunel.ac.uk/handle/2438/33231" />
    <author>
      <name>Jenkins, TO</name>
    </author>
    <author>
      <name>Edwards, GD</name>
    </author>
    <author>
      <name>Patel, S</name>
    </author>
    <author>
      <name>Canavan, J</name>
    </author>
    <author>
      <name>Kon, S</name>
    </author>
    <author>
      <name>Barker, RE</name>
    </author>
    <author>
      <name>Jones, S</name>
    </author>
    <author>
      <name>Walsh, JA</name>
    </author>
    <author>
      <name>Ingram, K</name>
    </author>
    <author>
      <name>Nolan, CM</name>
    </author>
    <author>
      <name>Man, WD-C</name>
    </author>
    <id>http://bura.brunel.ac.uk/handle/2438/33231</id>
    <updated>2026-05-07T13:37:30Z</updated>
    <published>2026-01-23T00:00:00Z</published>
    <summary type="text">Title: The minimal important deterioration of the incremental shuttle walk test in chronic obstructive pulmonary disease: a prospective cohort study
Authors: Jenkins, TO; Edwards, GD; Patel, S; Canavan, J; Kon, S; Barker, RE; Jones, S; Walsh, JA; Ingram, K; Nolan, CM; Man, WD-C
Abstract: Introduction: &#xD;
The incremental shuttle walk test (ISWT) is a standardized field walking test used to assess cardiorespiratory fitness, particularly in individuals with chronic cardiorespiratory conditions like chronic obstructive pulmonary disease (COPD), bronchiectasis, and idiopathic pulmonary fibrosis.1–3 It has been widely adopted as a validated measure of exercise tolerance in pulmonary rehabilitation.&#xD;
&#xD;
The minimum important difference (MID)—sometimes called the Minimal Clinically Important Difference—is the smallest change in an outcome that patients or their clinicians perceive as beneficial (or harmful). The MID is useful for evaluating the effectiveness (or not) of clinical interventions, and for epidemiological research, but can also be used to evaluate decline over time, especially in progressive conditions.&#xD;
&#xD;
To date, the minimum important improvement for the ISWT in COPD cohorts undergoing pulmonary rehabilitation has been established as between 35.0 m and 36.1 m using distribution- and anchor-based methods.1 However, the minimum important decline of the ISWT has not been established, and it is plausible that patients with COPD may perceive decline in a different way to improvement.&#xD;
&#xD;
The aims of this study were to describe the change in ISWT over 1 year in people with COPD and to estimate the minimum important decline of the ISWT using distribution- and anchor-based methods.
Description: Supplementary material: &#xD;
Supplementary data is available at Annals of the American Thoracic Society online at: https://academic.oup.com/annalsats/article/23/4/637/8435331#supplementary-data .</summary>
    <dc:date>2026-01-23T00:00:00Z</dc:date>
  </entry>
  <entry>
    <title>Evaluating Patient and Public Involvement and Engagement Activity Within the 3DPiPPIn Trial: A Qualitative Exploration of Contributors' Perspectives on Their Impact</title>
    <link rel="alternate" href="http://bura.brunel.ac.uk/handle/2438/33210" />
    <author>
      <name>Umoabasi, I</name>
    </author>
    <author>
      <name>Mansell, SK</name>
    </author>
    <author>
      <name>Mandal, S</name>
    </author>
    <author>
      <name>Kilbride, C</name>
    </author>
    <author>
      <name>Hilton, ST</name>
    </author>
    <author>
      <name>Main, E</name>
    </author>
    <author>
      <name>Schievano, S</name>
    </author>
    <author>
      <name>Callaghan, T</name>
    </author>
    <id>http://bura.brunel.ac.uk/handle/2438/33210</id>
    <updated>2026-05-07T13:47:22Z</updated>
    <published>2026-04-20T00:00:00Z</published>
    <summary type="text">Title: Evaluating Patient and Public Involvement and Engagement Activity Within the 3DPiPPIn Trial: A Qualitative Exploration of Contributors' Perspectives on Their Impact
Authors: Umoabasi, I; Mansell, SK; Mandal, S; Kilbride, C; Hilton, ST; Main, E; Schievano, S; Callaghan, T
Abstract: Introduction: &#xD;
Patient and Public Involvement and Engagement (PPIE) is now considered essential to the delivery of high-quality, patient-centred and translational research. However, despite widespread recognition of this, PPIE remains poorly understood, inconsistently utilised and inadequately reported.&#xD;
&#xD;
Objective: &#xD;
This study aimed to report, discuss and analyse the PPIE activities undertaken within 3DPiPPIn—a randomised control trial investigating the feasibility of using 3D printing to develop customised masks for patients receiving positive airway pressure (PAP) therapy. Emphasis was placed on analysing the wider impacts of these activities, including the impact on Patient Advisory Group (PAG) members.&#xD;
&#xD;
Methods: &#xD;
Data were collected from PAG members via 1:1 semi-structured interviews, which took place either face-to-face or online as per members' preference. Interviews were recorded, transcribed verbatim and analysed in NVivo using Braun and Clarke's Six-Phase Reflexive Thematic Analysis.&#xD;
&#xD;
Results: &#xD;
Three PAG members were interviewed; two were conducted remotely via Microsoft Teams, while the third took place face-to-face. Analysis resulted in the identification of three themes: ‘Disparate perceptions of PPIE influence in research’, ‘Empowered and enriched through PPIE’ and ‘Navigating the evolving experience and hurdles of PPIE’. PAG members described their influence on the trial as variable, feeling their involvement was impactful in some instances and insignificant in others. Despite this, they unanimously agreed that PAG involvement had a positive personal impact and that their experiences of PPIE were diverse and dynamic. Within the subtheme ‘Supports and stumbling blocks for PPIE’, members reflected on facilitators and barriers to PPIE. For example, the relaxed environment created by the Principal Investigator was seen to have promoted open discussion, while personal challenges sometimes diverted their focus from their role as a PAG member.&#xD;
&#xD;
Conclusion: &#xD;
This Reflexive Thematic Analysis explored the impact of PPIE on the 3DPiPPIn trial from the perspective of its PAG members. It exemplifies PPIE best practice and highlights areas for improvement to other researchers, advocating for meaningful rather than tokenistic PPIE. By encouraging excellence in PPIE, this report could enhance public engagement in research and, by demonstrating the impact and importance of quality PPIE, could inspire funders to ensure the provision of adequate PPIE resources.&#xD;
&#xD;
Trial Registration: &#xD;
Embedded within the 3DPiPPIn trial (ISRCTN 74082423).
Description: Patient or Public Contribution: &#xD;
Members of the 3DPiPPIn PAG co-designed this PPIE impact evaluation; however, their involvement extended throughout the trial. They also provided insights that shaped the recruitment strategy, methodology, lay summary and dissemination plan for the 3DPiPPIn study.; Data Availability Statement: &#xD;
Data supporting this study cannot be made available due to ethical reasons. Further enquires can be directed to the corresponding author.; Supporting Information is available online at: https://onlinelibrary.wiley.com/doi/10.1111/hex.70674#support-information-section .</summary>
    <dc:date>2026-04-20T00:00:00Z</dc:date>
  </entry>
  <entry>
    <title>Exploring the attitudes and perceptions of parents and healthcare stakeholders to accessing newborn screening for hearing loss in Port Harcourt, Nigeria: A qualitative study</title>
    <link rel="alternate" href="http://bura.brunel.ac.uk/handle/2438/33196" />
    <author>
      <name>Nwankwo, Chisom Jolly</name>
    </author>
    <id>http://bura.brunel.ac.uk/handle/2438/33196</id>
    <updated>2026-04-28T12:20:49Z</updated>
    <published>2025-01-01T00:00:00Z</published>
    <summary type="text">Title: Exploring the attitudes and perceptions of parents and healthcare stakeholders to accessing newborn screening for hearing loss in Port Harcourt, Nigeria: A qualitative study
Authors: Nwankwo, Chisom Jolly
Abstract: Background: Hearing loss is a major global public health challenge, with over 466 million people affected worldwide, including 34 million children. Early detection through newborn hearing screening (NHS) is critical for timely intervention, yet such services remain largely unavailable in low- and middle-income countries, including Nigeria. Despite evidence supporting the effectiveness of early hearing detection and intervention, uptake of NHS in Nigeria is limited. This study explored the attitudes and perceptions of parents and healthcare stakeholders towards accessing newborn hearing screening in Port Harcourt, Nigeria, with the aim of understanding the socio-cultural, institutional, and economic factors influencing participation. &#xD;
Methods: An interpretivist qualitative research design was employed to capture experiences and meanings from 25 purposively selected participants, including twenty parents and five healthcare stakeholders. Semi-structured interviews were conducted at the University of Port Harcourt Teaching Hospital between June and July 2022. Data were analysed using reflexive thematic analysis to identify recurrent themes and interpret the patterns of perception and behaviour influencing access to screening. &#xD;
Findings: Four overarching themes emerged: “Understanding and Community Perceptions,” “Contradictory and Complex Views,” “Factors in Access,” and “Promoting Access.” Major subthemes under these categories included cultural and religious beliefs framing hearing loss as a spiritual or moral punishment, leading to stigma and delayed health-seeking. Economic hardship, lack of awareness, inadequate infrastructure, and absence of national policy were identified as key barriers, albeit participants expressed openness to screening when made accessible and affordable. &#xD;
Conclusion and Recommendation: Access to newborn hearing screening in Nigeria is shaped by cultural beliefs, socio-economic constraints, and institutional limitations. Improving access requires culturally sensitive health education, inclusion of NHS within routine maternal and child health services, national policy development, and community engagement. These findings contribute context-specific insights to strengthen early hearing detection and intervention in low-resource settings.
Description: This thesis was submitted for the award of Doctor of Philosophy and was awarded by Brunel University London</summary>
    <dc:date>2025-01-01T00:00:00Z</dc:date>
  </entry>
</feed>

