Getting the right fit: Convergence between preferred and perceived involvement in treatment decision making among medical oncology outpatients

Abstract

Background and AimsWhile cancer patients' preferences for their level of involvement in treatment decision making (TDM) vary, previous research indicates a large proportion of patients are not experiencing TDM that meets their preferences. Evidence is needed to identify the characteristics of cancer patients who are less likely to report experiencing their preferred level of involvement in TDM, so that appropriate decision‐making support can be provided to them. We examined in a sample of medical oncology outpatients (1) the level of agreement between preferred and perceived involvement in TDM and (2) demographic, psychological, disease, and treatment characteristics associated with having unmet preferences for involvement in TDM.Methods and ResultsCancer patients from three medical oncology treatment centers in Australia completed surveys assessing demographic, disease and treatment variables, psychological distress, and preferred and perceived involvement in TDM. Data were collected between February 2013 and December 2014. Factors associated with having unmet TDM preferences were examined using logistic regression. There were 355 patients included in the analysis (75% response rate). The mean age (±SD) of the participants was 61 (±12), and 45% were male. Overall, 60% of participants reported that their preferences for involvement in TDM were met. No demographic, psychological, disease, or treatment characteristics were significantly associated with an increased probability of not having TDM preferences met.ConclusionsIn line with previous research, a large proportion (40%) of patients reported TDM experiences that were not in alignment with their preferences. Future research should explore additional characteristics that are associated with a lower likelihood of having TDM preferences met.

Patients' preferred and perceived level of involvement in decision making for cancer treatment: A systematic review

“…Most studies ( N = 13) included breast cancer patients, 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 , 36 , 37 , 38 two studies included patients with haematologic cancer, 39 , 40 two studies lung cancer patients, 41 , 42 one study colorectal cancer patients, 43 two studies prostate cancer patients 44 , 45 and others included various cancers. 9 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 More studies were performed in Western countries, 9 , 27 , 28 , 29 , 30 , 31 , 33 , 35 , 36 , 39 , 40 , 42 , 44 , 45 , 47 , 48 , 49 , 50 , 51 , 52 , 53 ,…”

“… 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 36 , 37 , 42 , 44 Five studies included advanced stage cancer patients, 35 , 41 , 46 , 48 , 51 eight studies included all stages, 9 , 34 , 38 , 47 , 52 , 53 , 54 and for six studies cancer stage was not reported. 39 , 40 , 43 , 45 , 49 , 50 Most studies used a cross‐sectional design in which patients’ preferred and perceived decision role were measured after treatment decision. 9 , 26 , 27 , 29 , 30 , 32 , 33 , 35 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 45 , 46 , 47 , 48 , 49 , 50 , 51 ...…”

“… 39 , 40 , 43 , 45 , 49 , 50 Most studies used a cross‐sectional design in which patients’ preferred and perceived decision role were measured after treatment decision. 9 , 26 , 27 , 29 , 30 , 32 , 33 , 35 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 45 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 Five studies used a prospective study design and measured patients’ preferred decision role before treatment decision and their perceived role afterwards. 28 , 31 , 34 , 36 , 44 Study characteristics of the studies included by Tariman et al.…”

“…Most studies (N = 13) included breast cancer patients, [26][27][28][29][30][31][32][33][34][35][36][37][38] two studies included patients with haematologic cancer, 39,40 two studies lung cancer patients, 41,42 one study colorectal cancer patients, 43 two studies prostate cancer patients 44,45 and others included various cancers. 9,46-54 More studies were performed in Western countries, 9,[27][28][29][30][31]33,35,36,39,40,42,44,45,[47][48][49][50][51][52][53][54] as compared to Asian countries. 26,32,34,37,38,41,43,…”

Assessing and reporting patient participation by means of patient preferences and experiences

“…For now, as the 4Ps tool does not provide a common route whereby a higher degree of all types of participation is consequentially better, a match-rank between preferences and experiences is important in order to visualise what constitutes ‘good’ and ‘bad’ patient participation, respectively [ 26 , 27 ]. By using a match-rank, the fit of the participation experienced by the patient relative to the preference profile is measured, making it possible to illustrate quality of care from the perspective of both individual and group-level data [ 28 ].…”