Patient and caregiver perspectives on decision support for symptom and quality of life management during cancer treatment: Implications for eHealth

Abstract

Patients were faced with an overwhelming amount of information and relied on their caregivers to help navigate the complexities of cancer care and self-manage SQL. Health technologies can provide informational support; however, decision support needs to span multiple venues to avoid increasing disparities caused by a digital divide.

Patients’ experiences of eHealth in palliative care: an integrative review.

“…Throughout the literature review, ndings were that eHealth applications generated multiple arenas for communication on patients' and families' own terms, and in their own time. In all the included studies, patients' experiences were predominantly positive for eHealth applications and communication (32)(33)(34)(35)(36)(37)(38)(39)(40)(41)(42)(43). Eleven studies described patients' practical experiences of using various technological tools to communicate digitally with their caregivers (32,33,(35)(36)(37)(38)(39)(40)(41)(42)(43).…”

“…Eleven studies described patients' practical experiences of using various technological tools to communicate digitally with their caregivers (32,33,(35)(36)(37)(38)(39)(40)(41)(42)(43). In the twelfth study, patients described wanting technical communication aids both to receive and to provide information digitally, and thus facilitate communication with healthcare professionals (34).…”

“…Another advantage of videoconferencing, compared to telephone consultation, was that how patients were feeling quickly became apparent, which was found convenient by patients since they did not need to explain themselves (42). The added visual information was desired and considered useful (34). However, contradictory ndings were found in two studies; one where patients favored the personal encounter and found that a deeper personal connection could not be achieved through eHealth technology (33), and in another study, some patients and families felt that they were satis ed with telephone calls and information by letter, since they found new technology di cult (34).…”

Clinician perspectives on symptom and quality of life experiences of patients during cancer therapies: Implications for eHealth

“…Wu and colleagues 19 explored the use of patient reported outcomes at 10 EPIC installation sites and found that while clinician prompts and alerts were automated, patient interventions were delivered after clinician synthesis of the information and ordering of patient education and referrals.Earlier work, with assessment plus tailored and automated self-care educational interventions, has been conducted in cancer care settings with positive results 10,19,20. Regular assessment or screening for cancer symptoms plus alerts to clinicians has been demonstrated to better sustain quality of life than usual care monitoring in patients with metastatic cancer13 but has not been shown to reduce specific symptomatology.Patient and caregiver focus groups conducted at the same institutions by Cooley et al (this issue-part I) resulted in findings aligned with the clinician focus groups 21. Issues surrounding contacting clinicians were relevant in both analyses, underscoring the importance of decision support systems to include clear instructions regarding patientprovider communication.…”

Moving toward the next generation of communication training in oncology: The relevance of findings from qualitative research

“…The first pile consisted of articles ( n = 25) whose findings did not have the potential to be relevant for communication training. The four main reasons for not considering these articles were as follows: they reported an element of communication, which is specific to a local context and thus not suitable for training outside this very context, for instance Egan et al (), Heidari and Mardani‐Hamooleh () and Anarado, Ezeome, Ofi, Nwaneri, and Ogbolu (); they assessed the effect of a communication tool, for instance Miller et al (), Lipson‐Smith et al () and Cooley et al (); they focused on a singular clinical situation (e.g., fertility preservation) or treatment (e.g., for early stage non‐small cell lung cancer, recurrent ovarian cancer), for instance Elit et al (), Dyer and Quinn (), and Golden, Thomas, Moghanaki, and Slatore (); or they addressed interventions to empower patients, for instance Jones et al (), and Halkett et al ().…”