TY - JOUR
T1 - Patient needs and priorities for patient navigator programmes in chronic kidney disease
T2 - a workshop report
AU - Guha, Chandana
AU - Lopez-Vargas, P.
AU - Ju, Angela
AU - Gutman, Talia
AU - Scholes-Robertson, Nicole Jane
AU - Baumgart, Amanda
AU - Wong, Germaine
AU - Craig, Jonathan
AU - Usherwood, Tim
AU - Reid, Sharon
AU - Cullen, Vanessa
AU - Howell, Martin
AU - Khalid, Rabia
AU - Teixeira-Pinto, Armando
AU - Wyburn, Kate
AU - Sen, Shaundeep
AU - Smolonogov, Tanya
AU - Lee, Vincent W.
AU - Rangan, Gopala K.
AU - Matus Gonzales, Andrea
AU - Tong, Allison
AU - PAVE-CKD workshop investigators
AU - Stevens, Aaron
AU - Sluiter, Amanda
AU - Schmidt, Carl
AU - Green, Charmaine
AU - De Iulio, Lino
AU - Van Wootten, Glenda
AU - Coolican, Helen
AU - Jeff, Helen
AU - Burns, Ian Russell
AU - Williamson, Ian
AU - Stevens, James
AU - Hartley, Jill
AU - Ellis, Julianne
AU - Hartley, Kevin
AU - Stevens, Lachlan
AU - Hackett, Luke
AU - Macauley, Luke
AU - Ramanac, Lynne
AU - Malek, Mahasin
AU - Grant, Paul
AU - Jeff, Raymond
AU - Stevens, Susan
AU - Abdullah-Vettar, Zubair
PY - 2020/11/5
Y1 - 2020/11/5
N2 - 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.
AB - 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.
KW - Chronic renal failure
KW - QUALITATIVE RESEARCH
KW - Quality in health care
UR - http://www.scopus.com/inward/record.url?scp=85095772730&partnerID=8YFLogxK
U2 - 10.1136/bmjopen-2020-040617
DO - 10.1136/bmjopen-2020-040617
M3 - Article
C2 - 33154061
AN - SCOPUS:85095772730
SN - 2044-6055
VL - 10
JO - BMJ Open
JF - BMJ Open
IS - 11
M1 - e040617
ER -
