General discussion 203 Further research should investigate whether appropriate use of a question prompt list, according to the model by Dineen-Griffin et al., not just increases patient empowerment, but also self-management. A study on improving self-management by using a question prompt list can have a randomised controlled trial design, in which one group of patients receives and discusses a question prompt list, and the second groups receives a ‘standard’ palliative care consultation or conversation without a question prompt list. Both groups receive person-centred care according to Dineen-Griffin’s essential elements. The primary outcome would be patients and family’s self-management. In this way, the value of a question prompt list on self-management of patients and family in the context of person-centred care can be determined. A review by Wakefield et al. suggested that a patient satisfaction questionnaire may be a valuable addition to a question prompt list.40 Further research can include the addition of patient satisfaction to the LGP, and be aimed at if this addition can improve personcentred care, patient empowerment and self-management. A study on an addition to the LGP could be an evaluation study including semi-structured interviews or questionnaires among patients and family. Clinicians indicated in Chapter 7 that the LGP can support palliative care consultations. However, for purposes to study whether non-specialists would support the use of the LGP, these clinicians had not used the LGP before. In advance of implementation of the LGP in several non-specialist settings, first a pilot study should be conducted among, for example, general practitioners to study the feasibility of using the LGP in their clinical practice. This pilot study can have a participatory action research (PAR) design. Using PAR, a working method can be developed using quantitative and qualitative research methodologies while improving care activities.94 PAR includes the execution of action cycles, during which the working method can be refined, tested, and evaluated. PAR supports developing a working method in specific settings, which may be helpful in the complexity of care settings. Next, a cluster randomised trial in general practices can demonstrate whether the LGP improves 1) patient outcomes, such as quality of life, satisfaction, information needs and symptom burden, and 2) quality of palliative care and end-of-life care, using outcomes like quality indicators and goal concordance. The LGP is mostly studied in patients with cancer. Further research involving the LGP should also include patients with non-cancer diseases to evaluate whether use of the LGP is suited in patients with a non-cancer diagnosis. This includes repeating the study presented in Chapter 6, which provides an oversight of symptom burden an information needs of patients of a palliative care consultation team of an academic medical centre, in another cohort of a palliative care consultation team. In this way, insight about symptom burden 8
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