Patient needs and priorities for patient navigator programmes in chronic kidney disease: a workshop report
Background and objective Patients with early chronic kidney disease (CKD) face challenges in accessing healthcare, including delays in diagnosis, fragmented speciality care and lack of tailored education and psychosocial support. Patient navigator programmes have the potential to improve the process...
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BMJ Publishing Group
2020-11-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/10/11/e040617.full |
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| author | Angela Ju Tim Usherwood Allison Tong Armando Teixeira-Pinto Germaine Wong Jonathan Craig Martin Howell Rabia Khalid Vincent W Lee Talia Gutman Sharon Reid Chandana Guha Gopala K Rangan Kate Wyburn P Lopez-Vargas Nicole Jane Scholes-Robertson Amanda Baumgart Vanessa Cullen Shaundeep Sen Tanya Smolonogov Andrea Matus Gonzales |
| author_facet | Angela Ju Tim Usherwood Allison Tong Armando Teixeira-Pinto Germaine Wong Jonathan Craig Martin Howell Rabia Khalid Vincent W Lee Talia Gutman Sharon Reid Chandana Guha Gopala K Rangan Kate Wyburn P Lopez-Vargas Nicole Jane Scholes-Robertson Amanda Baumgart Vanessa Cullen Shaundeep Sen Tanya Smolonogov Andrea Matus Gonzales |
| author_sort | Angela Ju |
| collection | DOAJ |
| description | Background and objective Patients with early chronic kidney disease (CKD) face challenges in accessing healthcare, including delays in diagnosis, fragmented speciality care and lack of tailored education and psychosocial support. Patient navigator programmes have the potential to improve the process of care and outcomes. The objective of this study is to describe the experiences of patients on communication, access of care and self-management and their perspectives on patient navigator programmes in early CKD.Design, setting and participants We convened a workshop in Australia with 19 patients with CKD (all stages including CKD Stage 1 to 5 not on dialysis, 5D (dialysis), and 5T (transplant)) and five caregivers. All of them were over 18 years and English-speaking. Transcripts from the workshop were analysed thematically.Results Four themes that captured discussions were: lost in the ambiguity of symptoms and management, battling roadblocks while accessing care, emotionally isolated after diagnosis and re-establishing lifestyle and forward planning. Five themes that focussed on patient navigator programmes were: trust and credibility, respecting patient choices and readiness to accept the programme, using accessible language to promote the programme, offering multiple ways to engage and communicate and maintaining confidentiality and privacy. Of the 17 features identified as important for a patient navigator programme, the top five were delivery of education, psychosocial support, lifestyle modification, communication and decision-making support and facilitating care.Conclusion Patient navigator services can address gaps in services around health literacy, communication, psychosocial support and coordination across multiple healthcare settings. In comparison to the existing navigator programmes, and other services that are aimed at addressing these gaps, credible, accessible and flexible patient navigator programmes for patients with early CKD, that support education, decision-making, access to care and self-management designed in partnership with patients, may be more acceptable to patients. |
| format | Article |
| id | doaj-art-b5f2a558d5c2488db56988032eabbd1d |
| institution | Kabale University |
| issn | 2044-6055 |
| language | English |
| publishDate | 2020-11-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj-art-b5f2a558d5c2488db56988032eabbd1d2024-11-26T02:05:09ZengBMJ Publishing GroupBMJ Open2044-60552020-11-01101110.1136/bmjopen-2020-040617Patient needs and priorities for patient navigator programmes in chronic kidney disease: a workshop reportAngela Ju0Tim Usherwood1Allison Tong2Armando Teixeira-Pinto3Germaine Wong4Jonathan Craig5Martin Howell6Rabia Khalid7Vincent W Lee8Talia Gutman9Sharon Reid10Chandana Guha11Gopala K Rangan12Kate Wyburn13P Lopez-Vargas14Nicole Jane Scholes-Robertson15Amanda Baumgart16Vanessa Cullen17Shaundeep Sen18Tanya Smolonogov19Andrea Matus Gonzales20Centre for Kidney Research, Westmead Hospital, Westmead, New South Wales, Australia1 Westmead Applied Research Centre, The University of Sydney, Westmead, New South Wales, Australia2 Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, AustraliaSydney School of Public Health, The University of Sydney, Sydney, New South Wales, AustraliaSydney School of Public Health, The University of Sydney, Sydney, New South Wales, AustraliaCollege of Medicine and Public Health, Flinders University, Adelaide, South Australia, AustraliaSydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia2 Westmead Clinical School, The University of Sydney, Sydney, New South Wales, AustraliaFaculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, AustraliaSydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia9 Specialty of Addiction Medicine, Central Clinical School, Faculty of Medicine and Health, University of Sydney, Sydney, New South Wales, AustraliaSydney School of Public Health, The University of Sydney, Sydney, New South Wales, AustraliaMichael Stern Laboratory for Polycystic Kidney Disease, Westmead Institute for Medical Research, Westmead, New South Wales, Australiatransplant nephrologistSydney School of Public Health, The University of Sydney, Sydney, New South Wales, AustraliaCentre for Kidney Research, The Children’s Hospital, Westmead, New South Wales, AustraliaSydney School of Public Health, The University of Sydney, Sydney, New South Wales, AustraliaForward Thinking Design, Quakers Hill, New South Wales, Australia2 Department of Renal Medicine, Concord Repatriation General Hospital, Concord, New South Wales, AustraliaDepartment of Renal Medicine, Westmead Hospital, Sydney, New South Wales, AustraliaSydney School of Public Health, The University of Sydney, Sydney, New South Wales, AustraliaBackground and objective Patients with early chronic kidney disease (CKD) face challenges in accessing healthcare, including delays in diagnosis, fragmented speciality care and lack of tailored education and psychosocial support. Patient navigator programmes have the potential to improve the process of care and outcomes. The objective of this study is to describe the experiences of patients on communication, access of care and self-management and their perspectives on patient navigator programmes in early CKD.Design, setting and participants We convened a workshop in Australia with 19 patients with CKD (all stages including CKD Stage 1 to 5 not on dialysis, 5D (dialysis), and 5T (transplant)) and five caregivers. All of them were over 18 years and English-speaking. Transcripts from the workshop were analysed thematically.Results Four themes that captured discussions were: lost in the ambiguity of symptoms and management, battling roadblocks while accessing care, emotionally isolated after diagnosis and re-establishing lifestyle and forward planning. Five themes that focussed on patient navigator programmes were: trust and credibility, respecting patient choices and readiness to accept the programme, using accessible language to promote the programme, offering multiple ways to engage and communicate and maintaining confidentiality and privacy. Of the 17 features identified as important for a patient navigator programme, the top five were delivery of education, psychosocial support, lifestyle modification, communication and decision-making support and facilitating care.Conclusion Patient navigator services can address gaps in services around health literacy, communication, psychosocial support and coordination across multiple healthcare settings. In comparison to the existing navigator programmes, and other services that are aimed at addressing these gaps, credible, accessible and flexible patient navigator programmes for patients with early CKD, that support education, decision-making, access to care and self-management designed in partnership with patients, may be more acceptable to patients.https://bmjopen.bmj.com/content/10/11/e040617.full |
| spellingShingle | Angela Ju Tim Usherwood Allison Tong Armando Teixeira-Pinto Germaine Wong Jonathan Craig Martin Howell Rabia Khalid Vincent W Lee Talia Gutman Sharon Reid Chandana Guha Gopala K Rangan Kate Wyburn P Lopez-Vargas Nicole Jane Scholes-Robertson Amanda Baumgart Vanessa Cullen Shaundeep Sen Tanya Smolonogov Andrea Matus Gonzales Patient needs and priorities for patient navigator programmes in chronic kidney disease: a workshop report BMJ Open |
| title | Patient needs and priorities for patient navigator programmes in chronic kidney disease: a workshop report |
| title_full | Patient needs and priorities for patient navigator programmes in chronic kidney disease: a workshop report |
| title_fullStr | Patient needs and priorities for patient navigator programmes in chronic kidney disease: a workshop report |
| title_full_unstemmed | Patient needs and priorities for patient navigator programmes in chronic kidney disease: a workshop report |
| title_short | Patient needs and priorities for patient navigator programmes in chronic kidney disease: a workshop report |
| title_sort | patient needs and priorities for patient navigator programmes in chronic kidney disease a workshop report |
| url | https://bmjopen.bmj.com/content/10/11/e040617.full |
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