Chapter 9 228 CHAPTER 6. ASSESSMENT OF PATIENT SYMPTOM BURDEN AND INFORMATION NEEDS HELPS TAILORING PALLIATIVE CARE CONSULTATIONS: AN OBSERVATIONAL STUDY We performed an observational study in 321 patients referred to a palliative care consultation team who had used a LGP between 2013 and 2018 to provide insight into the relationship between patient-reported symptom burden and information needs (Chapter 6). The secondary aim was to study the relationship between palliative phase (diseasemodifying versus symptom-management), and symptom burden and information needs. Most patients in this study had a diagnosis of cancer. Patients reported highest median symptom burden for Fatigue and Less appetite. Most information needs were about Fatigue, Possibilities for managing complaints in the future and Complaints expected for the future. Patients had more information needs about symptoms for which they reported clinically relevant burden, or which they had prioritised. However, patients who reported mild symptom burden, also regularly indicated they wanted information about that symptom. Patients in the symptom-management phase more often wanted information about how they could manage care at home or in a hospice, while patients in the disease-modifying phase wanted more information about how treatment could affect their quality of life. This study showed that assessment of symptom burden alone is not sufficient to explore about which topics patients need more information or about which they worry. CHAPTER 7. NON-SPECIALIST PALLIATIVE CARE - QUESTION PROMPT LIST PREPARATION: PATIENT, FAMILY AND CLINICIAN EXPERIENCES. Chapter 7 is a mixed-methods study performed in 2017-2018 to evaluate the use of the question prompt list of the LGP and to further develop it. Using 35 interviews (18 with patients and family, and 17 with clinicians), the use of the question prompt list was evaluated. The question prompt list was further developed using their suggestions. Thirty-two consultations were audiotaped and transcribed to explore the extent to which topics that patients and family had indicated to discuss, were actually discussed during the consultation. The results show that patients, family and clinicians regarded the question prompt list as relevant, comprehensible and comprehensive. Patients and family explained that using the question prompt list before the consultation structured their thoughts and helped them ask their questions during consultations. It supported them to regain a sense of control. Although using the question prompt list could evoke strong emotions, they described that their real challenge was to accept being a patient in the palliative phase. Clinicians found that the question prompt list could support them as
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