Palliative care is aimed at optimizing the quality of life, fidelity, and death of patients with an incurable disease and their loved ones. This is done, among other things, by identifying symptoms and concerns in the physical, physical, social, and existential dimension.(1) The “Utrecht Symptom Diary – four dimensions” (USD-4D) has been developed to make the severity of symptoms and concerns in these four dimensions clear and open to discussion.(2)

To support the monitoring of symptoms and concerns through the USD-4D in primary care, the USD-4D app has been developed for healthcare providers and patients.(3) General practitioners can invite a patient to use this USD-4D app. The home care provider can also be linked to the patient.

Using the USD-4D app offers GPs the opportunity to gain insight into what the patient is experiencing.(4) They can thoroughly review the USD-4D scores before seeing a patient again. This way, the GP can have a targeted conversation about what concerns the patient and what is important to him/her, and the patient is the center of attention. In addition, the GP can use the results to determine whether the built-in care/treatment is effective.(5) The USD-4D is never a goal in itself, but a validated means to provide targeted care and support patients in recognizing their own experiences and indicating what is important to them.(6)

For the implementation of the USD-4D app, we opt for passive follow-up(7) where the patient is instructed to contact the GP if desired. The USD-4D app also offers the option for active follow-up by activating 'alerts' for general practitioners and nurses, whereby an email is sent to their own GP if a score exceeds a value requiring action.

The implementation of the USD-4D app is a project of the Academic Workshop for Palliative Care in Primary Care (AWPZ).(8) General practices in this region are discussed about the USD-4D and the USD-4D app via the PaTz groups(9) and supported in their implementation. Interested general practices outside this region can contact the AWPZ to consider implementation options.

Everlien de Graaf,

Project leader implementation of USD-4D in primary care, Academic Workshop for Palliative Care in Primary Care

Senior researcher Palliative Care Expertise Center Utrecht, General Practice and Nursing Science(10), Julius Center for Health Sciences and Primary Care, UMC Utrecht.

Contact: awpz@umcutrecht.nl

“By using the USD-4D app, I can have a more targeted conversation with the patient, so that the points that are important to the patient are certainly discussed without it costing me more time.” GP

“I like that I can indicate what bothers me and what worries me. Care providers can always ask about this, if I don't feel like talking about it, that's fine too.” Patient

“The AWPZ gives me time to install the USD-4D app together with the patient and their loved ones and to guide them when they use it for the first time. If necessary, I can then take the time to discuss what this means for the patient.” Palliative care nurse

Sources

1. Kwaliteitskader palliatieve zorg Nederland - Palliaweb
2. INZICHT project: hetINitiëren en realiseren van dagelijkse ZIngeriCHTe zorg door integratie van het Ars Moriendi model in het Utrecht Symptoom Dagboek tot het USD-4D | ZonMw Projects
3. USD-4D | Utrecht Symptoom Dagboek (madenco.nl)
4. de Graaf E. et al., Symptom Intensity of Hospice Patients: A Longitudinal Analysis of Concordance Between Patients' and Nurses' Outcomes. J Pain Symptom Manage. 2018;55(2):272-81.
5. Palliatief redeneren - Palliaweb
6. de Vries, Sita, et al. "The content validity of the items related to the social and spiritual dimensions of the Utrecht symptom Diary-4 dimensional from a patient's perspective: a qualitative study." Journal of Pain and Symptom Management 61.2 (2021): 287-294.
7. Billingy NE et al. SYMPRO-Lung Consortium. Quality of life after patient-initiated versus physician-initiated response to symptom monitoring: the SYMPRO-Lung trial. J Natl Cancer Inst. 2023 Aug 21:djad159. doi: 10.1093/jnci/djad159..
8. Academische Werkplaats Palliatieve Zorg - UMC Utrecht
9. Overzicht PaTz groepen in Nederland - PaTz - PaTz
10. Expertisecentrum Palliatieve Zorg Utrecht - UMC Utrecht