{
  "abstract": "Objectives There are substantial barriers to initiate advance care planning (ACP) for persons with chronic-progressive disease in primary care settings. Some challenges may be disease-specific, such as communicating in case of cognitive impairment. This study assessed and compared the initiation of ACP in primary care with persons with dementia, Parkinson’s disease, cancer, organ failure and stroke.Design Longitudinal study linking data from a database of Dutch general practices’ electronic health records with national administrative databases managed by Statistics Netherlands.Setting and participants Data from general practice records of 199 034 community-dwelling persons with chronic-progressive disease diagnosed between 2008 and 2016.Outcome measure Incidence rate ratio (IRR) of recorded ACP planning conversations per 1000 person-years in persons with a diagnosis of dementia, Parkinson’s disease, organ failure, cancer or stroke, compared with persons without the particular diagnosis. Poisson regression and competing risk analysis were performed, adjusted for age, gender, migration background, living situation, frailty index and income, also for disease subsamples.Results In adjusted analyses, the rate of first ACP conversation for persons with organ failure was the lowest (IRR 0.70 (95% CI 0.68 to 0.73)). Persons with cancer had the highest rate (IRR 1.75 (95% CI 1.68 to 1.83)). Within the subsample of persons with organ failure, the subsample of persons with dementia and the subsample of stroke, a comorbid diagnosis of cancer increased the probability of ACP. Further, for those with organ failure or cancer, comorbid dementia decreased the probability of ACP.Conclusions Considering the complexity of initiating ACP for persons with organ failure or dementia, general practitioners should prioritise offering it to them and their family caregivers. Policy initiatives should stimulate the implementation of ACP for people with chronic-progressive disease.",
  "authors": [
    {
      "affiliations": [
        "Department of Primary and Community Care and Radboudumc Alzheimer Center, Radboud University Medical Center, Nijmegen, The Netherlands",
        "Groenhuysen Organisation, Roosendaal, The Netherlands"
      ],
      "name": "Danny Hommel"
    },
    {
      "affiliations": [
        "Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, The Netherlands"
      ],
      "name": "Bahar Azizi"
    },
    {
      "affiliations": [
        "Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, The Netherlands",
        "Topaz, Leiden, The Netherlands"
      ],
      "name": "Mandy Visser"
    },
    {
      "affiliations": [
        "Department of Tranzo, Tilburg School of Social and Behavioral Sciences, Tilburg University, Tilburg, The Netherlands"
      ],
      "name": "Sascha R Bolt"
    },
    {
      "affiliations": [
        "Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, The Netherlands"
      ],
      "name": "Jeanet W. Blom"
    },
    {
      "affiliations": [
        "Department of Health Services Research and Department of Family Medicine, Care and Public Health Research Institute, Faculty of Health Medicine and Life Sciences, Maastricht University, Maastricht, The Netherlands",
        "Department of Research and Development, Ciro, Horn, The Netherlands"
      ],
      "name": "Daisy J A Janssen"
    },
    {
      "affiliations": [
        "Department of General Practice, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands",
        "Aging & Later Life, Amsterdam Public Health Research Institute, Amsterdam, The Netherlands"
      ],
      "name": "Hein P.J. van Hout"
    },
    {
      "affiliations": [
        "Aging & Later Life, Amsterdam Public Health Research Institute, Amsterdam, The Netherlands",
        "NIVEL, Netherlands Institute for Health Services Research, Utrecht, The Netherlands",
        "Department of Public and Occupational Health, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands",
        "Expertise Center Palliative Care, Amsterdam UMC, Amsterdam, The Netherlands"
      ],
      "name": "Anneke L. Francke"
    },
    {
      "affiliations": [
        "Department of Tranzo, Tilburg School of Social and Behavioral Sciences, Tilburg University, Tilburg, The Netherlands",
        "NIVEL, Netherlands Institute for Health Services Research, Utrecht, The Netherlands"
      ],
      "name": "Robert A Verheij"
    },
    {
      "affiliations": [
        "Aging & Later Life, Amsterdam Public Health Research Institute, Amsterdam, The Netherlands",
        "Department of Medicine for Older People, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands"
      ],
      "name": "Karlijn J Joling"
    },
    {
      "affiliations": [
        "Department of Primary and Community Care and Radboudumc Alzheimer Center, Radboud University Medical Center, Nijmegen, The Netherlands",
        "Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, The Netherlands",
        "Cicely Saunders Institute, King’s College London, London, UK"
      ],
      "name": "Jenny T. van der Steen"
    }
  ],
  "title": "Occurrence of advance care planning for persons with dementia, cancer and other chronic-progressive diseases in general practice: longitudinal analysis of data from health records linked with administrative data",
  "uid": "a3e1cece-cdd1-518d-a540-8b55e43a512d"
}