Aligning clinical care with consumer priorities: an adult cystic fibrosis centre experience of co‐designing a model of care.

Cystic fibrosis (CF) is a multi‐system genetic condition, and CF modulator therapies have transformed health outcomes promising improved longevity. Our aim was to co‐design and implement a nested endocrine and metabolic model of care called CF Endocrine for adults with CF that aligned with consumer...

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Publicado en:Internal Medicine Journal pp. 1 - 7
Autores principales: Kumar, Shanal, Moore, Vanessa, Smith, Daniel, Matson, Angela
Formato: Journal Article
Publicado: Wiley-Blackwell Jul2026
Acceso en línea:Ver este registro en EBSCOhost
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      dt: Jul2026
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      pub: Wiley-Blackwell
      place: Malden, Massachusetts
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        10.1111/imj.70534
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        atl: Aligning clinical care with consumer priorities: an adult cystic fibrosis centre experience of co‐designing a model of care.
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          Kumar, Shanal
          Moore, Vanessa
          Smith, Daniel
          Matson, Angela
        affil: The Adult Cystic Fibrosis Centre (ACFC), The Prince Charles Hospital
      sug:
      ab: Cystic fibrosis (CF) is a multi‐system genetic condition, and CF modulator therapies have transformed health outcomes promising improved longevity. Our aim was to co‐design and implement a nested endocrine and metabolic model of care called CF Endocrine for adults with CF that aligned with consumer and healthcare provider priorities and addressed emerging service gaps in the post‐modulator era. Using mixed‐methods and implementation science methodologies, we designed and conducted surveys, audits and workshops to define service priorities and referral pathways and workflows. In total, 17% of adults attending our CF centre participated in the survey and reported lifestyle optimisation, weight management and diabetes prevention as leading consumer concerns. Four service arms were developed: (i) diabetes support, (ii) bone health, (iii) metabolic health and (iv) reproductive/sexual health. Providers showed strong alignment with consumer priorities and endorsed integration and feasibility of the new nested CF Endocrine service.
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      doctype: Journal Article
      ougenre: Article
    language: English
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