Shared decision making in cancer treatment: A Dutch national survey on patients' preferences and perceptions.

OBJECTIVE: Shared decision making (SDM) for cancer treatment yields positive results. However, it appears that discussing essential topics for SDM is not fully integrated into treatment decision making yet. Therefore, we aim to explore to what extent discussion of therapy options, treatment consequences, and personal priorities is preferred and perceived by (former) cancer patients. METHODS: An online questionnaire was distributed by the Dutch Federation of Cancer Patient Organisations among (former) cancer patients in 2018. RESULTS: Among 3785 (former) cancer patients, 3254 patients (86%) had discussed treatments with their health care provider (HCP) and were included for analysis. Mean age was 62.1 ± 11.5; 55% were female. Discussing the option to choose no (further) treatment was rated by 2751 (84.5%) as very important (median score 9/10-IQR 8-10). Its occurrence was perceived by 28% (N = 899), and short- and long-term treatment consequences were discussed in 81% (N = 2626) and 53% (N = 1727), respectively. An unmet wish to discuss short- and long-term consequences was reported by 22% and 26%, respectively. Less than half of the (former) cancer patients perceived that personal priorities (44%) and future plans (34%) were discussed. CONCLUSION: In the perception of (former) cancer patients, several essential elements for effective SDM are insufficiently discussed during cancer treatment decision making.

Evaluation of a multilevel implementation program for timeout and shared decision making in breast cancer care: a mixed methods study among 11 hospital teams.

OBJECTIVE: Evaluation of a multilevel implementation program on shared decision making (SDM) for breast cancer clinicians. METHODS: The program was based on the 'Measurement Instrument for Determinants of Innovations-model' (MIDI). Key factors for effective implementation were included. Eleven breast cancer teams selected from two geographical areas participated; first six surgery teams and second five systemic therapy teams. A mixed method evaluation was carried out at the end of each period: Descriptive statistics were used for surveys and thematic content analysis for semi-structured interviews. RESULTS: Twenty-eight clinicians returned the questionnaire (42%). Clinicians (96%) endorse that SDM is relevant to breast cancer care. The program supported adoption of SDM in their practice. Limited financial means, time constraints and concurrent activities were frequently reported barriers. Interviews (n = 21) showed that using a 4-step SDM model - when reinforced by practical examples, handy cards, feedback and training - helped to internalize SDM theory. Clinicians experienced positive results for their patients and themselves. Task re-assignment and flexible outpatient planning reinforce sustainable change. Patient involvement was valued. CONCLUSION: Our program supported breast cancer clinicians to adopt SDM. PRACTICE IMPLICATIONS: To implement SDM, multilevel approaches are needed that reinforce intrinsic motivation by demonstrating benefits for patients and clinicians.

Effects and Working Mechanisms of a Multilevel Implementation Program for Applying Shared Decision-Making while Discussing Systemic Treatment in Breast Cancer.

Background: Enhancing the application of shared decision-making (SDM) is critical for integrating patient preferences in breast cancer treatment choices. We investigated the effect of an adapted multilevel SDM implementation program in breast cancer care. Methods: Breast cancer patients qualifying for (neo)adjuvant systemic treatment were included in a multicenter before−after study. Consultations were audio recorded between June 2018 and July 2019 and analyzed using the five-item Observing Patient Involvement in Decision-Making (OPTION-5) instrument to score SDM application by clinicians. The Shared Decision-Making Questionnaire (SDM-Q-9) was used to rate patients' perceived SDM level. Consultation duration, decision types, number of options discussed and consultations per patient were monitored. Regression analysis was used to investigate the correlated variables and program components. Results: Mean OPTION-5 scores increased from 33.9 (n = 63) before implementation to 54.3 (n = 49) after implementation (p < 0.001). The SDM-Q-9 scores did not change: 91.1 (n = 51) at baseline versus 88.9 (n = 23) after implementation (p = 0.81). Without increasing consultation time, clinicians discussed more options after implementation. The regression analysis showed that exposure to the implementation program, redistribution of tasks and discussing feedback from consultations was associated with a higher level of SDM. Conclusion: The multilevel program helped clinicians achieve clinically relevant improvement in SDM, especially when it is tailored to (individuals in) teams and includes (e-)training, discussing feedback on consultations and redistribution of tasks.

Effects of a time out consultation with the general practitioner on cancer treatment decision-making: a randomised controlled trial: Time out with the general practitioner and cancer treatment decision.

OBJECTIVE: Improving shared decision-making (SDM) enables more tailored cancer treatment decisions. We evaluated a Time Out consultation (TOC) with the general practitioner (GP), between cancer diagnosis and treatment decision, which aims at supporting SDM and improving continuity of primary care. This study aims to evaluate the effects of a TOC on perceived SDM, information provision and self-efficacy. METHODS: This randomised controlled trial included newly diagnosed patients with curable cancer (breast, lung, colorectal, gynaecologic and melanoma) from four Dutch hospitals. Primary outcome is perceived SDM and secondary outcomes are information provision and self-efficacy. RESULTS: One hundred fifty-four patients (control n = 77, intervention n = 77) - female: 75%, mean age: 61 (SD ± 11.9). In the intervention group, 80.5% (n = 62) had a TOC, of which 82.3% (n = 51) took place after treatment decision. Perceived SDM was lower in the intervention group (-8.9 [95% CI: 0.6-17.1]). Among those with a TOC before treatment decision (n = 11), perceived SDM was comparable to the control group (66.5 ± 27.2 vs. 67.9 ± 26.1). CONCLUSION: Even though patients are motivated to have a TOC, implementing a TOC between diagnosis and treatment decision is challenging. Effects of a timely TOC could not be established. Non-timely TOC decreased perceived SDM. Planning of the TOC should be optimised, and future research should establish if adequately timed TOC results in improved SDM in cancer patients.

GP involvement after a cancer diagnosis; patients' call to improve decision support.

BACKGROUND: Shared decision making (SDM) is considered important to realise personalised cancer care. Increased GP involvement after a diagnosis is advocated to improve SDM. AIM: To explore whether patients with cancer are in need of GP involvement in cancer care in general and in SDM, and whether GP involvement occurs. DESIGN & SETTING: An online national survey was distributed by the Dutch Federation of Cancer Patient Organisations (NFK) in May 2019. METHOD: The survey was sent to (former) patients with cancer. Topics included GP involvement in cancer care in general and in SDM. Descriptive statistics and quotes were used. RESULTS: Among 4763 (former) patients with cancer, 59% (n = 2804) expressed a need for GP involvement in cancer care. Of these patients, 79% (n = 2193) experienced GP involvement. Regarding GP involvement in SDM, 82% of patients (n = 3724) expressed that the GP should 'listen to patients' worries and considerations', 69% (n = 3130) to 'check patients' understanding of information', 66% (n = 3006) to 'discuss patients' priorities in life and the consequences of treatment options for these priorities', and 67% (n = 3045) to 'create awareness of the patient's role in the decision making'. This happened in 47%, 17%, 15% and 10% of these patients, respectively. CONCLUSION: The majority of (former) patients with cancer expressed a need for active GP involvement in cancer care. GP support in the fundamental SDM steps is presently insufficient. Therefore, GPs should be made aware of these needs and enabled to support their patients with cancer in SDM.

Exploring the relationships between patient characteristics and their dialysis care experience.

BACKGROUND: Previous studies have shown that it is possible for patient experience to be influenced by factors that are not attributable to health-care. Therefore, if patient experience is to be used as an accurate indicator of clinical performance, then it is important to understand its determinants. METHODS: We used data from 840 dialysis patients who completed a validated patient experience survey. We created a potential theoretical framework based on available clinical knowledge to hypothesize the relationships between 13 demographic, socio-economic and health status factors and three outcome measures: global rating of the dialysis centre and the patient experience with the nephrologist's and nurses' care. The theoretical framework guided the selection of confounding variables for each determinant, which were then entered as terms in multivariable linear regression models. RESULTS: Patients who were of older age, of non-European decent, and who had a lower educational level, lower albumin level, with better self-rated health and who were without co-morbidities reported higher global ratings with the dialysis centre than their counterparts. Past myocardial infarction and better self-rated health were found to be determinants of a more positive experience while in the nephrologist's care. A more positive experience with nurses' care was associated with factors including older age, Dutch origin background, lower educational level, lower albumin levels and better self-rated health. CONCLUSIONS: Several characteristics of dialysis patients influence the way they rate and experience their care. When using the patient experience and ratings as indicators of clinical performance, they should be adjusted for such factors as identified in our study. This will facilitate a meaningful comparison of dialysis centres, and enable informed decision making by patients, insurers and policy makers.

Development and validation of the Consumer Quality index instrument to measure the experience and priority of chronic dialysis patients.

BACKGROUND: Patient experience is an established indicator of quality of care. Validated tools that measure both experiences and priorities are lacking for chronic dialysis care, hampering identification of negative experiences that patients actually rate important. METHODS: We developed two Consumer Quality (CQ) index questionnaires, one for in-centre haemodialysis (CHD) and the other for peritoneal dialysis and home haemodialysis (PHHD) care. The instruments were validated using exploratory factor analyses, reliability analysis of identified scales and assessing the association between reliable scales and global ratings. We investigated opportunities for improvement by combining suboptimal experience with patient priority. RESULTS: Sixteen dialysis centres participated in our study. The pilot CQ index for CHD care consisted of 71 questions. Based on data of 592 respondents, we identified 42 core experience items in 10 scales with Cronbach's α ranging from 0.38 to 0.88; five were reliable (α ≥ 0.70). The instrument identified information on centres' fire procedures as the aspect of care exhibiting the biggest opportunity for improvement. The pilot CQ index PHHD comprised 56 questions. The response of 248 patients yielded 31 core experience items in nine scales with Cronbach's α ranging between 0.53 and 0.85; six were reliable. Information on kidney transplantation during pre-dialysis showed most room for improvement. However, for both types of care, opportunities for improvement were mostly limited. CONCLUSIONS: The CQ index reliably and validly captures dialysis patient experience. Overall, most care aspects showed limited room for improvement, mainly because patients participating in our study rated their experience to be optimal. To evaluate items with high priority, but with which relatively few patients have experience, more qualitative instruments should be considered.