Optimizing the use of patients' individual outcome information - Development and usability tests of a Chronic Kidney Disease dashboard.

BACKGROUND: Reporting individual clinical and patient-reported outcomes to patients during consultations may add to patients' disease knowledge and activation and stimulate Shared Decision Making (SDM). These outcomes can be presented over time in a clear way by the means of dashboarding. We aimed to systematically develop a Chronic Kidney Disease (CKD) dashboard designed to support consultations, test its usability and explore conditions for optimal use in practice. METHODS: For development a participatory approach with patients and healthcare professionals (HCPs) from three hospitals was used. Working groups and patient focus groups were conducted to identify needs and inform the dashboard's design. Usability was tested in patient interviews. A focus group with HCPs was held to identify conditions for optimal use of the dashboard in daily practice. RESULTS: A dashboard was developed for CKD patients stage 3b-4 visualizing both clinical and patient-reported outcomes over time for use during consultations and accessible for patients at home. Both HCPs and patients indicated that the dashboard can: motivate patients in their treatment by providing feedback on outcomes over time; improve consultation conversations by enhanced preparation of both HCPs and patients; better inform patients, thereby facilitating shared decision making. HCPs and patients both stated that setting a topic agenda for the consultation together is important in effectively discussing the dashboard during consultations. Moreover, the dashboard should not dominate the conversation. Lastly, findings of the usability tests provided design requirements for optimal user-friendliness and clarity. CONCLUSIONS: Dashboarding can be a valuable way of reporting individual outcome information to patients and their clinicians as findings suggest it may stimulate patient activation and facilitate decision making. Co-creation with patients and HCPs was essential for successful development of the dashboard. Gained knowledge from the co-creation process can inform others wishing to develop similar digital tools for use in clinical practice.

Relations between recurrence risk perceptions and fear of cancer recurrence in breast cancer survivors.

PURPOSE: This study aimed to: (1) determine the accuracy of Dutch breast cancer survivors' estimations of the locoregional recurrence risk (LRR); (2) examine which variables influence (the accuracy of) risk estimations, and risk appraisals; and (3) investigate the influence of the objective LRR risk (estimated using the INFLUENCE-nomogram), risk estimations and risk appraisals on fear of cancer recurrence (FCR). Findings of this study will inform clinicians on risk communication and can improve communication about FCR. METHODS: In a cross-sectional survey among 258 breast cancer survivors, women's recurrence risk estimations (in odds) and risk appraisals (in high/low), FCR, demographics and illness perceptions, about one year after surgery were measured and compared to the objective risk for LRRs estimated using the INFLUENCE-nomogram. RESULTS: Half of the women (54%) accurately estimated their LRR risk, 34% underestimated and 13% overestimated their risk. Risk estimations and risk appraisals were only moderately positively correlated (r = 0.58). Higher risk appraisals were associated with radiotherapy (r = 0.18) and having weaker cure beliefs (r = - 0.19). Younger age was associated with overestimation of risk (r = - 0.23). Recurrence risk estimations and risk appraisals were associated with more FCR (r = 0.29, r = 0.39). In regression, only risk appraisal contributed significantly to FCR. CONCLUSION: Although women were fairly accurate in recurrence risk estimations, it remains difficult to predict over- or underestimation. Recurrence risk estimations and risk appraisal are two different concepts which are both associated with FCR and should therefore be addressed in patient-provider communication.

Development of a patient decision aid for discharge planning of hospitalized patients with stroke.

BACKGROUND: Patient involvement in discharge planning of patients with stroke can be accomplished by providing personalized outcome information and promoting shared decision-making. The aim of this study was to develop a patient decision aid (PtDA) for discharge planning of hospitalized patients with stroke. METHODS: A convergent mixed methods design was used, starting with needs assessments among patients with stroke and health care professionals (HCPs). Results of these assessments were used to develop the PtDA with integrated outcome information in several co-creation sessions. Subsequently, acceptability and usability were tested to optimize the PtDA. Development was guided by the International Patient Decision Aids Standards (IPDAS) criteria. RESULTS: In total, 74 patients and 111 HCPs participated in this study. A three-component PtDA was developed, consisting of: 1) a printed consultation sheet to introduce the options for discharge destinations, containing information that can be specified for each individual patient; 2) an online information and deliberation tool to support patient education and clarification of patient values, containing an integrated "patients-like-me" model with outcome information about discharge destinations; 3) a summary sheet to support actual decision-making during consultation, containing the patient's values and preferences concerning discharge planning. In the acceptability test, all qualifying and certifying IPDAS criteria were fulfilled. The usability test showed that patients and HCPs highly appreciated the PtDA with integrated outcome information. CONCLUSIONS: The developed PtDA was found acceptable and usable by patients and HCPs and is currently under investigation in a clinical trial to determine its effectiveness.

Experiences with information provision and preferences for decision making of patients with acute stroke.

OBJECTIVE: The aim of this study was to gain insight into experiences of patients with acute stroke regarding information provision and their preferred involvement in decision-making processes during the initial period of hospitalisation. METHODS: A sequential explanatory design was used in two independent cohorts of patients with stroke, starting with a survey after discharge from hospital (cohort 1) followed by observations and structured interviews during hospitalisation (cohort 2). Quantitative data were analysed descriptively. RESULTS: In total, 72 patients participated in this study (52 in cohort 1 and 20 in cohort 2). During hospitalisation, the majority of the patients were educated about acute stroke and their treatment. Approximately half of the patients preferred to have an active role in the decision-making process, whereas only 21% reported to be actively involved. In cohort 2, 60% of the patients considered themselves capable to carefully consider treatment options. CONCLUSIONS: Active involvement in the acute decision-making process is preferred by approximately half of the patients with acute stroke and most of them consider themselves capable of doing so. However, they experience a limited degree of actual involvement. PRACTICE IMPLICATIONS: Physicians can facilitate patient engagement by explicitly emphasising when a decision has to be made in which the patient's opinion is important.

Reasons for not reaching or using web-based self-management applications, and the use and evaluation of Oncokompas among cancer survivors, in the context of a randomised controlled trial.

INTRODUCTION: The web-based self-management application Oncokompas was developed to support cancer survivors to monitor health-related quality of life and symptoms (Measure) and to provide tailored information (Learn) and supportive care options (Act). In a previously reported randomised controlled trial (RCT), 68% of 655 recruited survivors were eligible, and of those 45% participated in the RCT. Among participants of the RCT that were randomised to the intervention group, 52% used Oncokompas as intended. The aim of this study was to explore reasons for not participating in the RCT, and reasons for not using Oncokompas among non-users, and the use and evaluation of Oncokompas among users. METHODS: Reasons for not participating were assessed with a study-specific questionnaire among 243 survivors who declined participation. Usage was investigated among 320 participants randomised to the intervention group of the RCT via system data and a study-specific questionnaire that was assessed during the 1 week follow-up (T1) assessment. RESULTS: Main reasons for not participating were not interested in participation in scientific research (40%) and not interested in scientific research and Oncokompas (28%). Main reasons for not being interested in Oncokompas were wanting to leave the period of being ill behind (29%), no symptom burden (23%), or lacking internet skills (18%). Out of the 320 participants in the intervention group 167 (52%) used Oncokompas as intended. Among 72 non-users, main reasons for not using Oncokompas were no symptom burden (32%) or lack of time (26%). Among 248 survivors that activated their account, satisfaction and user-friendliness were rated with a 7 (scale 0-10). Within 3 (IQR 1-4) sessions, users selected 32 (IQR 6-37) topics. Main reasons for not using healthcare options in Act were that the information in Learn was already sufficient (44%) or no supportive care needs (32%). DISCUSSION: Main reasons for not reaching or using Oncokompas were no symptom burden, no supportive care needs, or lack of time. Users selected many cancer-generic and tumour-specific topics to address, indicating added value of the wide range of available topics.

Cost-utility of an eHealth application 'Oncokompas' that supports cancer survivors in self-management: results of a randomised controlled trial.

PURPOSE: The eHealth self-management application 'Oncokompas' was developed to support cancer survivors in monitoring health-related quality of life (HRQOL) and symptoms, and obtaining personalized feedback and options for supportive care. The aim of this study was to assess the cost-utility of Oncokompas compared with care as usual (CAU) among cancer survivors. METHODS: Survivors were randomly allocated to the intervention or control group. Direct (non-)medical, indirect non-medical costs, and HRQOL were measured at 3- and 6-month follow-up, using iMTA Medical Consumption and Productivity Costs and the EuroQol-5D questionnaires. Mean cumulative costs and quality-adjusted life-years (QALYs) were compared between both groups. RESULTS: In total, 625 survivors were randomized into intervention (n = 320) or control group (n = 305). Base case analysis showed that incremental costs from a societal perspective were - €163 (95% CI, - 665 to 326), and incremental QALYs were 0.0017 (95% CI, - 0.0121 to 0.0155) in the intervention group compared with those in the control group. The probability that, compared with CAU, Oncokompas is more effective was 60%, less costly 73%, and both more effective and less costly 47%. Sensitivity analyses showed that incremental costs vary between - €40 and €69, and incremental QALYs vary between - 0.0023 and - 0.0057. CONCLUSION: Oncokompas is likely to be equally effective on utilities, and not more expensive than CAU, and will therefore contribute to sustainable cancer survivorship care in a (cost-)effective manner. IMPLICATIONS FOR CANCER SURVIVORS: Oncokompas seems to improve HRQOL and reduces the burden of several tumour-specific symptoms, while costs from a societal perspective are similar to CAU.

The eHealth self-management application 'Oncokompas' that supports cancer survivors to improve health-related quality of life and reduce symptoms: which groups benefit most?

BACKGROUND: Oncokompas is a web-based self-management application that supports cancer survivors to monitor their health-related quality of life (HRQOL) and symptoms, and to obtain personalised feedback and tailored options for supportive care. In a large randomised controlled trial among survivors of head and neck cancer, colorectal cancer, and breast cancer and (non-)Hodgkin lymphoma, Oncokompas proved to improve HRQOL, and to reduce several tumour-specific symptoms. Effect sizes were however small, and no effect was observed on the primary outcome patient activation. Therefore, this study aims to explore which subgroups of cancer survivors may especially benefit from Oncokompas. MATERIALS AND METHODS: Cancer survivors (n = 625) were randomly assigned to the intervention group (access to Oncokompas, n = 320) or control group (6 months waiting list, n = 305). Outcome measures were HRQOL, tumour-specific symptoms, and patient activation. Potential moderators included socio-demographic (sex, age, marital status, education, employment), clinical (tumour type, stage, time since diagnosis, treatment modality, comorbidities), and personal factors (self-efficacy, personal control, health literacy, Internet use), and patient activation, mental adjustment to cancer, HRQOL, symptoms, and need for supportive care, measured at baseline. Linear mixed models were performed to investigate potential moderators. RESULTS: The intervention effect on HRQOL was the largest among cancer survivors with low to moderate self-efficacy, and among those with high personal control and those with high health literacy scores. Cancer survivors with higher baseline symptom scores benefitted more on head and neck (pain in the mouth, social eating, swallowing, coughing, trismus), and colorectal cancer (weight) specific symptoms. DISCUSSION: Oncokompas seems most effective in reducing symptoms in head and neck cancer and colorectal cancer survivors who report a higher burden of tumour-specific symptoms. Oncokompas seems most effective in improving HRQOL in cancer survivors with lower self-efficacy, and in cancer survivors with higher personal control, and higher health literacy.

Durable usage of patient-reported outcome measures in clinical practice to monitor health-related quality of life in head and neck cancer patients.

PURPOSE: To investigate the long-term follow-up (5 years) of implementing patient-reported outcome measures (PROMs) in clinical practice to monitor health-related quality of life (HRQOL) in head and neck cancer (HNC) patients. METHODS: A mixed method design was used. The usage rate of OncoQuest (a touch screen computer system to monitor HRQOL) and the subsequent nurse consultation was calculated among HNC patients who visited the outpatient clinic for regular follow-up, as well as differences between ever users and never users (sociodemographic and clinical characteristics). The content of the nurse consultation was investigated. Reasons for not using (barriers) or using (facilitators) OncoQuest and the nurse consultation were explored from the perspective of HNC patients, and of head and neck surgeons. RESULTS: Usage rate of OncoQuest was 67% and of the nurse consultation 79%. Usage of OncoQuest was significantly related to tumor subsite and tumor stage. Topics most frequently (>40%) discussed during the nurse consultation were global quality of life (97%), head and neck cancer related symptoms (82%), other physical symptoms such as pain (61%), and psychological problems such as anxiety (44%). Several barriers and facilitators to implement PROMs in clinical practice were reported by both patients and head and neck surgeons. CONCLUSION: Usage of PROMs in clinical practice and a nurse consultation is durable, even 5 years after the introduction. This study contributes to better insight into long-term follow-up of implementation, thereby guiding future research and projects that aim to implement PROMs in clinical practice to monitor HRQOL among (head and neck) cancer patients.

Efficacy of meaning-centered group psychotherapy for cancer survivors: a randomized controlled trial.

BACKGROUND: The aim of this study was to assess the efficacy of meaning-centered group psychotherapy for cancer survivors (MCGP-CS) to improve personal meaning, compared with supportive group psychotherapy (SGP) and care as usual (CAU). METHOD: A total of 170 cancer survivors were randomly assigned to one of the three study arms: MCGP-CS (n = 57); SGP (n = 56); CAU (n = 57). The primary outcome measure was the Personal Meaning Profile (PMP; total score). Secondary outcome measures were subscales of the PMP, psychological well-being (Scales of Psychological Well-being; SPWB), post-traumatic growth (Posttraumatic Growth Inventory), Mental Adjustment to Cancer (MAC), optimism (Life Orientation Test-Revised), hopelessness (Beck's Hopelessness Scale), psychological distress (anxiety and depression, Hospital Anxiety and Depression Scale; HADS) and quality of life (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire; EORTC QLQ-C30). Outcome measures were assessed before randomization, post-intervention, and after 3 and 6 months of follow-up (FU). RESULTS: Linear mixed model analyses (intention-to-treat) showed significant differences between MCGP-CS, SGP and CAU on the total PMP score, and on (sub)scales of the PMP, SPWB, MAC and HADS. Post-hoc analyses showed significantly stronger treatment effects of MCGP-CS compared with CAU on personal meaning (d = 0.81), goal-orientedness (d = 1.07), positive relations (d = 0.59), purpose in life (d = 0.69); fighting spirit (d = 0.61) (post-intervention) and helpless/hopeless (d = -0.87) (3 months FU); and distress (d = -0.6) and depression (d = -0.38) (6 months FU). Significantly stronger effects of MCGP-CS compared with SGP were found on personal growth (d = 0.57) (3 months FU) and environmental mastery (d = 0.66) (6 months FU). CONCLUSIONS: MCGP-CS is an effective intervention for cancer survivors to improve personal meaning, psychological well-being and mental adjustment to cancer in the short term, and to reduce psychological distress in the long run.

Feasibility of an eHealth application "OncoKompas" to improve personalized survivorship cancer care.

PURPOSE: The purpose of this study was to investigate the feasibility of an online self-management application (OncoKompas) among cancer survivors. In OncoKompas, cancer survivors can monitor their quality of life (QOL) via participant reported outcomes (PROs) ("Measure"), which is followed by automatically generated individually tailored feedback ("Learn") and personalized advice on supportive care services ("Act"). METHODS: A pretest-posttest design was used, conducting a survey before providing access to OncoKompas, and 2 weeks after, followed by an interview by a nurse. Adoption was defined as the percentage of cancer survivors that agreed to participate in the study and returned the T0 questionnaire. Implementation was defined as the percentage of participants that actually used OncoKompas as intended (T1). General satisfaction was assessed based on the mean score of three study-specific questions: (1) general impression of OncoKompas, (2) the user-friendliness, and (3) the ability to use OncoKompas without assistance (10-point Likert scales). Furthermore, satisfaction was measured with the Net Promotor Scale (NPS). RESULTS: OncoKompas was feasible with an adoption grade of 64 %, an implementation grade of 75-91 %, a mean satisfaction score of 7.3, and a positive NPS (1.9). Sociodemographic and clinical factors and QOL were not associated with satisfaction. Several facilitators and barriers related to the feasibility of OncoKompas were identified. CONCLUSION: OncoKompas is considered feasible, but has to be further improved. In order to enhance feasibility and increase satisfaction, we have to balance the time it takes to use OncoKompas, measurement precision, and tailoring towards personalized advices.

Cancer patients' experiences with and perceived outcomes of yoga: results from focus groups.

PURPOSE: Yoga is a "mind-body" exercise, a combination of physical poses with breathing and meditation, and may have beneficial effects on physical and psychosocial symptoms. We aimed to explore cancer patients' motives for practicing yoga, experiences of practicing yoga, and perceived physical and psychosocial outcomes. METHODS: Participants (n = 45) following yoga classes for cancer patients were asked to participate in focus group interviews, of whom 29 participated. The focus groups (n = 5) were audio taped with prior consent and transcribed verbatim. Data were analyzed by two coders and independently coded into key issues and themes. RESULTS: Mean age of the participants was 53.8 (SD 10.8) years, of whom 25 were women, and 18 were diagnosed with breast cancer. Motives for participation in yoga were relaxation, the will to be physically active, the wish to pay more attention to one's body, coping with psychosocial symptoms, contributing to their cancer rehabilitation process, and combing physical and mental processes. Main physical and psychosocial experiences of yoga mentioned by patients were regaining body awareness, raising attention to the inner self, learning how to relax, enjoyment, and finding recognition and understanding. Increased physical fitness and function, mental strength and resilience, increased coping, being more relaxed, and happiness were frequently mentioned experiences of patients. CONCLUSIONS: Patients with different types of cancer perceived several benefits on physical and psychosocial outcomes by practicing yoga. Therefore, yoga can be a valuable form of supportive care for cancer patients.

Participation in online patient support groups endorses patients' empowerment.

OBJECTIVE: Although much has been expected of the empowering effect of taking part in online patient support groups, there is no direct evidence thus far for the effects of participation on patient empowerment. Hence our exploring to what extent patients feel empowered by their participation in online support groups, and which processes that occur in these groups are related to the empowering outcomes. METHODS: An online questionnaire was completed by 528 individuals who were active in online groups for patients with breast cancer, fibromyalgia and arthritis. RESULTS: The respondents felt empowered in several ways by their participation. The empowering outcomes that were experienced to the strongest degree were 'being better informed' and 'enhanced social well-being'. No significant differences in empowering outcomes between diagnostic groups were found. The empowering outcomes could only be predicted in a modest way by the processes that took place in the online support groups. CONCLUSION: This study indicates that participation in online support groups can make a valuable contribution to the empowerment of patients. PRACTICE IMPLICATIONS: Health care providers should acquaint their patients with the existence of online support groups and with the benefits that participation in these groups can offer.