Identifying and integrating consumer perspectives in clinical practice guidelines on autosomal-dominant polycystic kidney disease

Allison Tong, David J Tunnicliffe, Pamela Lopez-Vargas, Andrew Mallett, Chirag Patel, Judy Savige, Katrina Campbell, Manish Patel, Michel C Tchan, Stephen I Alexander, Vincent Lee, Jonathan C Craig, Robert Fassett, Gopala K Rangan

Research output: Contribution to journalArticleResearchpeer-review

9 Citations (Scopus)

Abstract

AIM: This study aimed to identify consumer perspectives on topics and outcomes to integrate in the Kidney Health Australia Caring for Australasians with Renal Impairment (KHA-CARI) clinical practice guidelines on autosomal-dominant polycystic kidney disease (ADPKD).

METHODS: A workshop involving three concurrent focus groups with 18 consumers (patients with ADPKD (n = 15), caregivers (n = 3)) was convened. Guideline topics, interventions and outcomes were identified, and integrated into guideline development. Thematic analysis was used to analyse the reasons for their choices.

RESULTS: Twenty-two priority topics were identified, with most focussed on non-pharmacological management (diet, fluid intake, physical activity, complementary medicine), pain management and psychosocial care (mental health, counselling, cognitive and behavioural training, education, support groups). They also identified 26 outcomes including quality of life (QoL), progression of kidney disease, kidney function, cyst growth and nephrotoxity. Almost all topics and outcomes suggested were identified by health professionals with the exception of five topics/outcomes. Six themes reflected reasons for their choices: clarifying ambiguities, resolving debilitating pain, concern for family, preparedness for the future, taking control and significance of impact.

CONCLUSION: Although there was considerable concordance between the priority topics and outcomes of health professionals and consumers for guidelines of ADPKD, there was also important discordance with consumers focused on fewer issues, but particularly on lifestyle, psychosocial support, pain, and QoL and renal outcomes. Active consumer engagement in guidelines development can help to ensure the inclusion of patient-centred recommendations, which may lead to better management of disease progression, symptoms, complications, and psychosocial impact.

Original languageEnglish
Pages (from-to)122-132
Number of pages11
JournalNephrology
Volume21
Issue number2
DOIs
Publication statusPublished - Feb 2016
Externally publishedYes

Fingerprint

Autosomal Dominant Polycystic Kidney
Practice Guidelines
Guidelines
Kidney
Health
Quality of Life
Education
Pain
Training Support
Self-Help Groups
Kidney Diseases
Pain Management
Complementary Therapies
Focus Groups
Caregivers
Disease Progression
Life Style
Cysts
Counseling
Mental Health

Cite this

Tong, A., Tunnicliffe, D. J., Lopez-Vargas, P., Mallett, A., Patel, C., Savige, J., ... Rangan, G. K. (2016). Identifying and integrating consumer perspectives in clinical practice guidelines on autosomal-dominant polycystic kidney disease. Nephrology, 21(2), 122-132. https://doi.org/10.1111/nep.12579
Tong, Allison ; Tunnicliffe, David J ; Lopez-Vargas, Pamela ; Mallett, Andrew ; Patel, Chirag ; Savige, Judy ; Campbell, Katrina ; Patel, Manish ; Tchan, Michel C ; Alexander, Stephen I ; Lee, Vincent ; Craig, Jonathan C ; Fassett, Robert ; Rangan, Gopala K. / Identifying and integrating consumer perspectives in clinical practice guidelines on autosomal-dominant polycystic kidney disease. In: Nephrology. 2016 ; Vol. 21, No. 2. pp. 122-132.
@article{bd3a832bfc8a46748605fe8cab077e4e,
title = "Identifying and integrating consumer perspectives in clinical practice guidelines on autosomal-dominant polycystic kidney disease",
abstract = "AIM: This study aimed to identify consumer perspectives on topics and outcomes to integrate in the Kidney Health Australia Caring for Australasians with Renal Impairment (KHA-CARI) clinical practice guidelines on autosomal-dominant polycystic kidney disease (ADPKD).METHODS: A workshop involving three concurrent focus groups with 18 consumers (patients with ADPKD (n = 15), caregivers (n = 3)) was convened. Guideline topics, interventions and outcomes were identified, and integrated into guideline development. Thematic analysis was used to analyse the reasons for their choices.RESULTS: Twenty-two priority topics were identified, with most focussed on non-pharmacological management (diet, fluid intake, physical activity, complementary medicine), pain management and psychosocial care (mental health, counselling, cognitive and behavioural training, education, support groups). They also identified 26 outcomes including quality of life (QoL), progression of kidney disease, kidney function, cyst growth and nephrotoxity. Almost all topics and outcomes suggested were identified by health professionals with the exception of five topics/outcomes. Six themes reflected reasons for their choices: clarifying ambiguities, resolving debilitating pain, concern for family, preparedness for the future, taking control and significance of impact.CONCLUSION: Although there was considerable concordance between the priority topics and outcomes of health professionals and consumers for guidelines of ADPKD, there was also important discordance with consumers focused on fewer issues, but particularly on lifestyle, psychosocial support, pain, and QoL and renal outcomes. Active consumer engagement in guidelines development can help to ensure the inclusion of patient-centred recommendations, which may lead to better management of disease progression, symptoms, complications, and psychosocial impact.",
author = "Allison Tong and Tunnicliffe, {David J} and Pamela Lopez-Vargas and Andrew Mallett and Chirag Patel and Judy Savige and Katrina Campbell and Manish Patel and Tchan, {Michel C} and Alexander, {Stephen I} and Vincent Lee and Craig, {Jonathan C} and Robert Fassett and Rangan, {Gopala K}",
note = "{\circledC} 2015 Asian Pacific Society of Nephrology.",
year = "2016",
month = "2",
doi = "10.1111/nep.12579",
language = "English",
volume = "21",
pages = "122--132",
journal = "Nephrology",
issn = "1320-5358",
publisher = "Wiley Blackwell (American Society Bone & Mineral Research)",
number = "2",

}

Tong, A, Tunnicliffe, DJ, Lopez-Vargas, P, Mallett, A, Patel, C, Savige, J, Campbell, K, Patel, M, Tchan, MC, Alexander, SI, Lee, V, Craig, JC, Fassett, R & Rangan, GK 2016, 'Identifying and integrating consumer perspectives in clinical practice guidelines on autosomal-dominant polycystic kidney disease' Nephrology, vol. 21, no. 2, pp. 122-132. https://doi.org/10.1111/nep.12579

Identifying and integrating consumer perspectives in clinical practice guidelines on autosomal-dominant polycystic kidney disease. / Tong, Allison; Tunnicliffe, David J; Lopez-Vargas, Pamela; Mallett, Andrew; Patel, Chirag; Savige, Judy; Campbell, Katrina; Patel, Manish; Tchan, Michel C; Alexander, Stephen I; Lee, Vincent; Craig, Jonathan C; Fassett, Robert; Rangan, Gopala K.

In: Nephrology, Vol. 21, No. 2, 02.2016, p. 122-132.

Research output: Contribution to journalArticleResearchpeer-review

TY - JOUR

T1 - Identifying and integrating consumer perspectives in clinical practice guidelines on autosomal-dominant polycystic kidney disease

AU - Tong, Allison

AU - Tunnicliffe, David J

AU - Lopez-Vargas, Pamela

AU - Mallett, Andrew

AU - Patel, Chirag

AU - Savige, Judy

AU - Campbell, Katrina

AU - Patel, Manish

AU - Tchan, Michel C

AU - Alexander, Stephen I

AU - Lee, Vincent

AU - Craig, Jonathan C

AU - Fassett, Robert

AU - Rangan, Gopala K

N1 - © 2015 Asian Pacific Society of Nephrology.

PY - 2016/2

Y1 - 2016/2

N2 - AIM: This study aimed to identify consumer perspectives on topics and outcomes to integrate in the Kidney Health Australia Caring for Australasians with Renal Impairment (KHA-CARI) clinical practice guidelines on autosomal-dominant polycystic kidney disease (ADPKD).METHODS: A workshop involving three concurrent focus groups with 18 consumers (patients with ADPKD (n = 15), caregivers (n = 3)) was convened. Guideline topics, interventions and outcomes were identified, and integrated into guideline development. Thematic analysis was used to analyse the reasons for their choices.RESULTS: Twenty-two priority topics were identified, with most focussed on non-pharmacological management (diet, fluid intake, physical activity, complementary medicine), pain management and psychosocial care (mental health, counselling, cognitive and behavioural training, education, support groups). They also identified 26 outcomes including quality of life (QoL), progression of kidney disease, kidney function, cyst growth and nephrotoxity. Almost all topics and outcomes suggested were identified by health professionals with the exception of five topics/outcomes. Six themes reflected reasons for their choices: clarifying ambiguities, resolving debilitating pain, concern for family, preparedness for the future, taking control and significance of impact.CONCLUSION: Although there was considerable concordance between the priority topics and outcomes of health professionals and consumers for guidelines of ADPKD, there was also important discordance with consumers focused on fewer issues, but particularly on lifestyle, psychosocial support, pain, and QoL and renal outcomes. Active consumer engagement in guidelines development can help to ensure the inclusion of patient-centred recommendations, which may lead to better management of disease progression, symptoms, complications, and psychosocial impact.

AB - AIM: This study aimed to identify consumer perspectives on topics and outcomes to integrate in the Kidney Health Australia Caring for Australasians with Renal Impairment (KHA-CARI) clinical practice guidelines on autosomal-dominant polycystic kidney disease (ADPKD).METHODS: A workshop involving three concurrent focus groups with 18 consumers (patients with ADPKD (n = 15), caregivers (n = 3)) was convened. Guideline topics, interventions and outcomes were identified, and integrated into guideline development. Thematic analysis was used to analyse the reasons for their choices.RESULTS: Twenty-two priority topics were identified, with most focussed on non-pharmacological management (diet, fluid intake, physical activity, complementary medicine), pain management and psychosocial care (mental health, counselling, cognitive and behavioural training, education, support groups). They also identified 26 outcomes including quality of life (QoL), progression of kidney disease, kidney function, cyst growth and nephrotoxity. Almost all topics and outcomes suggested were identified by health professionals with the exception of five topics/outcomes. Six themes reflected reasons for their choices: clarifying ambiguities, resolving debilitating pain, concern for family, preparedness for the future, taking control and significance of impact.CONCLUSION: Although there was considerable concordance between the priority topics and outcomes of health professionals and consumers for guidelines of ADPKD, there was also important discordance with consumers focused on fewer issues, but particularly on lifestyle, psychosocial support, pain, and QoL and renal outcomes. Active consumer engagement in guidelines development can help to ensure the inclusion of patient-centred recommendations, which may lead to better management of disease progression, symptoms, complications, and psychosocial impact.

UR - http://www.scopus.com/inward/record.url?scp=84955564750&partnerID=8YFLogxK

U2 - 10.1111/nep.12579

DO - 10.1111/nep.12579

M3 - Article

VL - 21

SP - 122

EP - 132

JO - Nephrology

JF - Nephrology

SN - 1320-5358

IS - 2

ER -