The MuSt-PC: A Multidimensional Strategy to improve quality of life of patients with multiple symptoms and Palliative Care needs
Pilot study to assess the MuSt-PC tool

In this pilot study, physicians and nurse practitioners working in different
care settings will use MuSt-PC, for adult patients with any life-limiting
illness, for whom the Surprise question is answered negatively: if the HCP
answers *no* to the question *Would I be surprised if this patient died in the
next 12 months?*. In total, at least 65eligible patients will be recruited and
asked to perform all study assessments.

After a baseline screening assessment, all eligible patients with at least 2
simultaneously occurring symptoms with a numeric rating score >=4 on the 11
point scale on the Utrecht Symptom Diary, will be asked to fill out the Utrecht
Symptom Diary during two weeks. In the first week twice daily (morning and
evening), in the second week once daily (evening).

The primary objective is to assess the ability and willingness of patients to
complete follow-up assessments (i.e. the number of patients who completed all
questionnaires during follow-up).
After a baseline assessment, all eligible patients (those with at least 2
simultaneously occurring symptoms with a numeric rating score >=4 on the 11
point scale on the Utrecht Symptom Diary) will be asked to fill out the Utrecht
Symptom Diary during two weeks. In the first week, twice daily (morning and
evening), in the second week once daily (evening).


Secondary objectives are:
• Recruitment of patients; the number of patients that consented and those that
declined participation (with the reason of decline), as well as number of
eligible patients (with at least two items on USD-4D >= 4 at baseline) (% of
patients);
• Adherence to advice by patients (medical (e.g., intake of medication) and
non-medical (e.g.,relaxation exercises) provided based on the MuSt-PC CDSS (%);
• Patient impressions of the MuSt-PC CDSS (10 questions with a 4-point Likert
scale);
• Time until symptom burden decreases after the use of the MuSt-PC CDSS based
on the filled out Utrecht Symptom Diaries (days);
• Feedback about the follow-up assessments within this pilot (open questions).

Patients in a palliative care trajectory with multiple simultaneously occurring
symptoms will be asked to participate. Eligible patients will be identified by
a selection of the GHCPs that participate in the feasibility study. After
providing informed consent the patients will be given a treatment advice for
their symptoms by their GHCP, based on the MuSt-PC clinical decision support
system. Thereafter, patients will be followed and asked to fill out the Utrecht
Symptom Diary during two weeks. In the first week, twice daily (morning and
evening), in the second week once daily (evening). *

In this pilot study, we use the non-adoption, abandonment and challenges to
scale-up, spread and sustainability of technology-supported change efforts in
health care (NASSS) as the theoretical framework. This framework consist of
seven domains: condition; technology; value proposition; adopters;
organizations; wider system and embedding and adaptation over time (figure 1).
The use and embedding within the health care system of the MuSt-PC CDSS is
complex: most health care professionals do not recognize all symptoms and their
interconnection in patients in a palliative care trajectory. The guidelines are
directed at one symptom, and not yet multiple simultaneously occurring
symptoms, the use of a CDSS in it-self might be difficult for some health care
professionals.
Setting up this pilot study with the NASSS as theoretical framework will reveal
the complexity of the various domains that have to be addressed so that,
ultimately, development and implementation of the MuSt-PC CDSS over time can be
ensured. Within this pilot study the emphasis will be on value proposition and
adopters. Within the domain value proposition the efficacy and safety of the
MuSt-PC CDSS will be studied. The following endpoints will be addressed:
adherence to advices provided based on the MuSt-PC CDSS; number of occasions
that patients and healthcare professionals had contact with regard to the
symptoms; and time until symptom burden decreases. Within the domain adopter
system the changes for the patients and the wider care network will be
investigated. The following endpoints will be addressed: the completeness of
the follow-up assessments; level of empowerment of patients by self-assessment
of symptom burden; and the included patients will be asked to give feedback on
the study with regard to follow-up assessments and felt support by the use of
the MuSt-PC CDSS.

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