Chapter 6 122 Information needs Patients most often reported information needs related to Symptoms/problems, Medication and treatment and Organisation of care. Least needs for information concern topics about Social/Meaning. Patients and families are known to expect clinicians to provide information about their illness, symptoms, care, and future. They expect to discuss social or spiritual support among themselves or with a social worker or spiritual carer.33 Few patients reported information needs regarding Sexuality and intimacy. In a previous study, it was shown that neither patients nor clinicians initiated this topic during consultations.21 This may be because of time limitations, other priorities, or considering the topic taboo. Additionally, patients find that healthcare professionals generally focus on medical treatment and checking physical symptoms.34 Yet, in a study on the impact of disease on sexuality and intimacy in patients receiving palliative care, almost half of the patients reported that their intimacy was impacted by their illness, and over 75% of the patients thought discussing intimacy can be helpful.35, 36 It is likely that, even if the question prompt list explicitly gives them this option, patients do not want or expect to discuss the topic during a palliative care consultation. They may need a more encouraging invitation than a question prompt list to start this particular conversation. In the used version of the question prompt list, the word “sexuality” was placed before “intimacy”. We have reversed it to make it more inviting to discuss non-sexual physical contact with loved ones. We found that information needs of patients depend on the palliative disease phase. Patients in the symptom-management phase had more information needs about Hospice care than patients in the disease-modifying phase. A possible explanation is that the former have fewer treatments or contacts in the hospital and need to organise care in a hospice. Relationship between symptom burden, prioritised symptom(s), and information needs We found that patient-reported symptom burden and prioritised symptoms were positively associated with information needs. In addition, patients who reported mild symptom burden often reported information needs on these symptoms. This suggests that symptom scores alone are not fully indicative of patients’ information needs regarding symptoms. For example, concerns about future symptoms or experience with symptoms in others may prompt a wish for information. Using a question prompt list to support patients and families to prepare for palliative care consultations can close the gap between concerns and actual symptom burden, because it encourages patients and families to ask more questions during consultations, and improves understanding of treatment plans and recall of information.21, 37 Additionally, clinicians of patients who used a question prompt list expressed more engagement with the patient, explained more about prognoses and treatment, responded more to emotions, and were reminded to pay more attention to topics patients wanted to discuss.21, 38-41
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