Patient Priorities Concerning Treatment Decisions for Advanced Neuroendocrine Tumors Identified by Discrete Choice Experiments.

BACKGROUND: Patients with advanced neuroendocrine tumors (NETs) have multiple treatment options. Ideally, treatment decisions are shared between physician and patient; however, previous studies suggest that oncologists and patients place different value on treatment attributes such as adverse event (AE) rates. High-quality information on NET patient treatment preferences may facilitate patient-centered decision making by helping clinicians understand patient priorities. METHODS: This study used 2 discrete choice experiments (DCE) to elicit preferences of NET patients regarding advanced midgut and pancreatic NET (pNET) treatments. The DCEs used the "potentially all pairwise rankings of all possible alternatives" (PAPRIKA) method. The primary objective was to determine relative utility rankings for treatment attributes, including progression-free survival (PFS), treatment modality, and AE rates. Ranking of attribute profiles matching specific treatments was also determined. Levels for treatment attributes were obtained from randomized clinical trial data of NET treatments. RESULTS: One hundred and 10 participants completed the midgut NET DCE, and 132 completed the pNET DCE. Longer PFS was the highest ranked treatment attribute in 64.5% of participants in the midgut NET DCE, and in 59% in the pNET DCE. Approximately, 40% of participants in both scenarios prioritized lower AE rates or less invasive treatment modalities over PFS. Ranking of treatment profiles in the midgut NET scenario identified 60.9% of participants favoring peptide receptor radionuclide therapy (PRRT), and 30.0% somatostatin analogue dose escalation. CONCLUSION: NET patients have heterogeneous priorities when choosing between treatment options based on the results of 2 independent DCEs. These results highlight the importance of shared decision making for NET patients.

Impacts of patient and family engagement in hospital planning and improvement: qualitative interviews with patient/family advisors and hospital staff.

BACKGROUND: Patient engagement (PE) in hospital planning and improvement is widespread, yet we lack evidence of its impact. We aimed to identify benefits and harms that could be used to assess the impact of hospital PE. METHODS: We interviewed hospital-affiliated persons involved in PE activities using a qualitative descriptive approach and inductive content analysis to derive themes. We interpreted themes by mapping to an existing framework of healthcare performance measures and reported themes with exemplar quotes. RESULTS: Participants included 38 patient/family advisors, PE managers and clinicians from 9 hospitals (2 < 100 beds, 4 100 + beds, 3 teaching). Benefits of PE activities included 9 impacts on the capacity of hospitals. PE activities involved patient/family advisors and clinicians/staff in developing and spreading new PE processes across hospital units or departments, and those involved became more adept and engaged. PE had beneficial effects on hospital structures/resources, clinician staff functions and processes, patient experience and patient outcomes. A total of 14 beneficial impacts of PE were identified across these domains. Few unintended or harmful impacts were identified: overextended patient/family advisors, patient/family advisor turnover and clinician frustration if PE slowed the pace of planning and improvement. CONCLUSIONS: The 23 self reported impacts were captured in a Framework of Impacts of Patient/Family Engagement on Hospital Planning and Improvement, which can be used by decision-makers to assess and allocate resources to hospital PE, and as the basis for ongoing research on the impacts of hospital PE and how to measure it.

The Cost of Patient Education Materials Development: Opportunities to Identify Value and Priorities.

The study aim was to evaluate the costs associated with developing and reviewing patient education materials (pamphlets) across Ontario cancer centers. While patient education often produces a positive return on investment, limited efforts have been dedicated to optimizing the personnel, time, and capital dedicated to this feat across healthcare systems. Patient education leaders at 14 cancer centers completed a survey measure, estimating the number of hours spent developing and reviewing pamphlets and identifying the personnel involved in each procedural step. The time expended per center in each step was then combined with average salary data for the identified personnel to derive total cost estimates. Cancer centers spend on average $5672 (SD = $3180) developing (M = $4560, SD = $2620) and reviewing (M = $1112, SD = $654) one pamphlet. This cumulates to an average per annum spending of $65,401 (SD = $75,494) for pamphlet development and $19,819 (SD = $28,524) for annual pamphlet review at each cancer center. The cost and number of hours spent developing and reviewing pamphlets varied substantially between cancer centers. While the security of budgets for patient education varies across cancer centers, opportunities to optimize human capital and monetary resources should be considered. Results of the study can be used to advocate for sustainable investment into cancer education programs, improve the coordination of educational materials production and review, and ensure that resource quality and access are consistent across the province.

Approaches to optimize patient and family engagement in hospital planning and improvement: Qualitative interviews.

BACKGROUND: Patient engagement (PE) in health-care planning and improvement is a growing practice. We lack evidence-based guidance for PE, particularly in hospital settings. This study explored how to optimize PE in hospitals. METHODS: This study was based on qualitative interviews with individuals in various roles at hospitals with high PE capacity. We asked how patients were engaged, rationale for approaches chosen and solutions for key challenges. We identified themes using content analysis. RESULTS: Participants included 40 patient/family advisors, PE managers, clinicians and executives from 9 hospitals (2 < 100 beds, 4 100 + beds, 3 teaching). Hospitals most frequently employed collaboration (standing committees, project teams), followed by blended approaches (collaboration + consultation), and then consultation (surveys, interviews). Those using collaboration emphasized integrating perspectives into decisions; those using consultation emphasized capturing diverse perspectives. Strategies to support engagement included engaging diverse patients, prioritizing what benefits many, matching patients to projects, training patients and health-care workers, involving a critical volume of patients, requiring at least one patient for quorum, asking involved patients to review outputs, linking PE with the Board of Directors and championing PE by managers, staff and committee/team chairs. CONCLUSION: This research generated insight on concrete approaches and strategies that hospitals can use to optimize PE for planning and improvement. On-going research is needed to understand how to recruit diverse patients and best balance blended consultation/collaboration approaches. PATIENT OR PUBLIC CONTRIBUTION: Three patient research partners with hospital PE experience informed study objectives and interview questions.

Hospital capacity for patient engagement in planning and improving health services: a cross-sectional survey.

BACKGROUND: Patient engagement (PE) in planning or improving hospital facilities or services is one approach for improving healthcare delivery and outcomes. To provide evidence on hospital capacity needed to support PE, we described the attributes of hospital PE capacity associated with clinical quality measures. METHODS: We conducted a cross-sectional survey of general and specialty hospitals based on the Measuring Organizational Readiness for Patient Engagement framework. We derived a PE capacity index measure, and with Multiple Correspondence Analysis, assessed the association of PE capacity with hospital type, and rates of hand-washing, C. difficile infection rates and 30-day readmission. RESULTS: Respondents (91, 66.4%) included general: < 100 beds (48.4%), 100+ beds (27.5%), teaching hospitals (11.0%) and specialty (13.2%) hospitals. Most featured PE in multiple clinical and corporate departments. Most employed PE in a range of Planning (design/improve facilities 94.5%, develop strategic plans 87.9%), Evaluation/Quality Improvement (accreditation 91.2%, develop QI plans 90.1%) and Service Delivery activities (develop information/communication aids 92.3%). Hospitals enabled PE with multiple supports (median 12, range 0 to 25), most often: 76.9% strategic plan recognizes PE, 74.7% patient/family advisory council, and 69.2% pool of patient volunteers; and least often: 30.0% PE staff, 26.4% PE funding and 16.5% patient reimbursement or 3.3% compensation. Hospitals employed a range of less (inform, consult) and more (involve, partner) active modes of engagement. Two variables accounted for 29.6% of variance in hospital PE capacity index measure data: number of departments featuring PE and greater use of active engagement modes. PE capacity was not associated with general hospital type or clinical quality measures. CONCLUSIONS: Hospitals with fewer resources can establish favourable PE conditions by deploying PE widely and actively engaging patients. Healthcare policy-makers, hospital executives and PE managers can use these findings to allocate PE resources. Future research should explore how PE modes and methods impact clinical outcomes.

Organizational capacity for patient and family engagement in hospital planning and improvement: interviews with patient/family advisors, managers and clinicians.

BACKGROUND: Patient and family engagement (PE) in healthcare planning and improvement achieves beneficial outcomes and is widely advocated, but a lack of resources is a critical barrier. Little prior research studied how organizations support engagement specifically in hospitals. OBJECTIVE: We explored what constitutes hospital capacity for engagement. METHODS: We conducted descriptive qualitative interviews and complied with criteria for rigour and reporting in qualitative research. We interviewed patient/family advisors, engagement managers, clinicians and executives at hospitals with high engagement activity, asking them to describe essential resources or processes. We used content analysis and constant comparison to identify themes and corresponding quotes and interpreted findings by mapping themes to two existing frameworks of PE capacity not specific to hospitals. RESULTS: We interviewed 40 patient/family advisors, patient engagement managers, clinicians and corporate executives from nine hospitals (two < 100 beds, four 100 + beds, three teaching). Four over-arching themes about capacity considered essential included resources, training, organizational commitment and staff support. Views were similar across participant and hospital groups. Resources included funding and people dedicated to PE and technology to enable communication and collaboration. Training encompassed initial orientation and project-specific training for patient/family advisors and orientation for new staff and training for existing staff on how to engage with patient/family advisors. Organizational commitment included endorsement from the CEO and Board, commitment from staff and continuous evaluation and improvement. Staff support included words and actions that conveyed value for the role and input of patient/family advisors. The blended, non-hospital-specific framework captured all themes. Hospitals of all types varied in the availability of funding dedicated to PE. In particular, reimbursement of expenses and compensation for time and contributions were not provided to patient/family advisors. In addition to skilled engagement managers, the role of clinician or staff champions was viewed as essential. CONCLUSION: The findings build on prior research that largely focused on PE in individual clinical care or research or in primary care planning and improvement. The findings closely aligned with existing frameworks of organizational capacity for PE not specific to hospital settings, which suggests that hospitals could use the blended framework to plan, evaluate and improve their PE programs. Further research is needed to yield greater insight into how to promote and enable compensation for patient/family advisors and the role of clinician or staff champions in supporting PE.

Gaps in the Management of Depression Symptoms Following Cancer Diagnosis: A Population-Based Analysis of Prospective Patient-Reported Outcomes.

BACKGROUND: One of the most common psychological morbidities of cancer is depression. Routine depression symptoms screening (DSS) is recommended, but its ability to lead to psychosocial interventions in clinical practice is limited. We examined the use of and factors associated with psychosocial interventions for positive DSS following cancer diagnosis. MATERIALS AND METHODS: We conducted a population-based cohort study of patients with diagnoses from 2010 to 2017 who reported ≥1 patient-reported Edmonton Symptom Assessment System (ESAS) score. Positive DSS was defined as ESAS ≥2 out of 10 for the depression item within 6 months of diagnosis. Outcomes were psychosocial interventions around the time of positive DSS: palliative care assessment, psychiatry/psychology assessment, social work referral, and antidepressant therapy (in patients ≥65 years of age with universal drug coverage). We examined reduction in depression symptom score (≥1 point) following intervention. Modified Poisson regression examined factors associated with interventions. RESULTS: Of 142,270 patients, 65,424 (46.0%) reported positive DSS at a median of 66 days (interquartile range: 34-105) after diagnosis. Of those with depression symptoms, 17.1% received palliative assessment, 1.7% psychiatry/psychology assessment, 8.4% social work referral, and 4.3% antidepressant therapy. Depression symptom score decreased in 67.2% who received palliative assessment, 63.7% with psychiatry/psychology assessment, 67.3% with social work referral, and 71.4% with antidepressant therapy. On multivariable analysis, patients with older age, rural residence, lowest income quintile, and genitourinary or oropharyngeal cancer were more likely to not receive intervention other than palliative care. CONCLUSION: The proportion of patients reporting positive DSS after cancer diagnosis receiving psychosocial intervention is low. We identified patients vulnerable to not receiving interventions, who may benefit from additional support. These data represent a call to action to modify practice and optimize the usefulness of systematic symptom screening. IMPLICATIONS FOR PRACTICE: Patient-reported depression symptoms screening should be followed by targeted interventions to improve symptoms and patient-centered management.

Development of a national position statement on cancer patient navigation in Canada.

As the landscape of cancer care in Canada evolves, oncology nursing roles are developed to enhance the patient experience and address the changing needs of patients and families. Cancer Patient Navigation (CPN), an oncology nursing role focusing primarily on person-centred care coordination and system navigation, has become integral to providing high-quality cancer care in many Canadian jurisdictions. Since 2016, a national group of oncology nursing leaders have been engaged in convening and catalyzing our understanding of the role of patient navigation in the Canadian cancer context with the purpose of developing a national position statement on CPN. In this paper, we provide a historical analysis of the development of the forthcoming Canadian Association of Nurses in Oncology (CANO) position statement on CPN. We present an analysis of participant feedback from workshops at the 2016, 2017, and 2018 conferences, and meeting minutes from the National working group over this same time period. This paper serves as a concise historical summary of the evolution of CPN in Canada while providing a template for other groups looking to develop a consensus-based position statement.

Élaboration d'un énoncé de position national sur la navigation des patients atteints de cancer au Canada.

Au Canada, le paysage des soins du cancer évolue et les infirmières en oncologie sont appelées à jouer de nouveaux rôles afin d'améliorer l'expérience des patients et des familles et de répondre à leurs besoins toujours changeants. L'un de ces rôles, la navigation des patients atteints de cancer (NPC), vise principalement à coordonner les soins centrés sur la personne et à guider les patients dans le système de santé. Dans plusieurs provinces et territoires du Canada, la navigation est devenue essentielle pour offrir des soins de grande qualité aux patients cancéreux. Depuis 2016, des chefs de file des soins infirmiers oncologiques se réunissent au sein d'un groupe national pour synthétiser leur compréhension de la navigation des patients en contexte canadien afin d'élaborer un énoncé de position national sur la NPC. Dans le présent article, nous analyserons l'historique de l'élaboration de l'énoncé de position sur la NPC que publiera prochainement l'Association canadienne des infirmières en oncologie (ACIO/CANO). Nous analyserons également les commentaires des participants aux ateliers tenus dans le cadre des congrès de 2016, 2017 et 2018, de même que les comptes rendus des réunions du groupe de travail national qui ont eu lieu pendant cette même période. Le présent article se veut un sommaire historique concis de l'évolution de la NPC au Canada, ainsi qu'un modèle pour les autres groupes aspirant à rédiger un énoncé de position consensuel.

Innovation pratique : infirmières en pratique avancée et soins du cancer.

OBJECTIFS: La présente étude avait pour but de recueillir, en consultation avec les infirmières en pratique avancée (IPA), des données probantes sur les pratiques émergentes afin de combler les lacunes à cet égard dans les lignes directrices sur le recours judicieux aux infirmières en pratique avancée dans la prestation des services aux adultes atteints de cancer en Ontario (Effective Use of Advanced Practice Nurses in the Delivery of Adult Cancer Services in Ontario), ainsi que de proposer un ensemble de recommandations, formulées par un groupe d'experts, pour créer un programme de recherche qui permettra de recueillir et de publier des données probantes de niveau 1 et de niveau 2. MÉTHODOLOGIE: Une enquête Delphi modifiée à trois tours faisant appel à la méthodologie mise au point par RAND et UCLA (aussi appelée ≪ Appropriateness Methodology ≫) a été utilisée pour solliciter l'avis des spécialistes sur le recours aux IPA pour le soin des adultes atteints de cancer en Ontario. RÉSULTATS: Trente-quatre (34) cas de recours aux IPA ont été recensés. L'enquête Delphi modifiée a permis de définir 30 énoncés de rôle à partir desquels ont été formulées neuf (9) recommandations supplémentaires sur l'intervention des IPA dans la prestation des soins aux adultes atteints de cancer. CONCLUSION: Les recommandations de la présente étude orienteront les recherches à venir pour combler les lacunes au chapitre des données probantes quant au rôle des IPA dans la prestation des soins du cancer au Canada.

Practical innovation: Advanced practice nurses in cancer care.

OBJECTIVES: The objectives of this study were to gather emerging practice evidence, through consultation with Advance Practice Nurses (APN), to fill the evidence gaps in the published guidelines, Effective Use of Advanced Practice Nurses in the Delivery of Adult Cancer Services in Ontario, and to provide a set of expert panel recommendations to build a research agenda to promote the collection and publication of Level 1 and 2 evidence. METHOD: A three-step RAND/UCLA Appropriateness Methodology (RAM) modified Delphi process was used to solicit expert opinion on the use of APNs in adult cancer care in Ontario. RESULTS: Thirty-four (34) case examples of APN use were gathered. The modified Delphi process concluded with the endorsement of 30 APN role statements that were used to develop nine (9) additional recommendations regarding the use of APNs in the delivery of adult cancer care. CONCLUSION: The recommendations from this study provide direction for future research to close the current evidence gap regarding the role of APNs in cancer care delivery in Canada.

Evaluating cancer patient-reported outcome measures: Readability and implications for clinical use.

BACKGROUND: The benefits of patient-reported outcome measures (PROMs) are well known; however, their readability has come into question because multiple PROMs have been found to be incomprehensible to patients. This is a critical safety and equity consideration because PROMs are increasingly being integrated into routine clinical practice. A key strategy for promoting patient comprehension is the use of plain language. The aim of this study was to determine whether PROMs routinely used in the cancer setting meet plain-language best practices. METHODS: To report the plain-language level of each PROM, readability (Fry Readability Graph, Simple Measure of Gobbledygook, Flesch Reading Ease, and FORCAST) and understandability assessments (Patient Education Materials Assessment Tool [PEMAT] for Printable Materials) were performed. PROMs at grade level 6 or lower and with PEMAT scores greater than 80% were considered to meet plain-language best practices. PROMs were divided into 4 domains (physical, emotional, social, and quality of life) and 17 dimensions (eg, pain was a dimension of the physical domain). A subanalysis was conducted to determine whether specific domains and dimensions were more likely to adhere to plain-language best practices. RESULTS: More than half of the 45 PROMs evaluated (n = 33 [73%]) had a grade level higher than 6. Understandability scores ranged from 29% to 100%. The majority of the PROMs that did not meet plain-language best practices were within the physical and emotional domains and focused on the patient's symptom experience. CONCLUSIONS: This evaluation shows that more than half of the most commonly used cancer PROMs do not meet plain-language best practices. Practice implications include the necessity for plain-language assessment during the PROM validation process, the consideration of plain language in PROM selection, and plain-language review and editing of low-scoring PROMs.

Patterns of Symptoms Burden in Neuroendocrine Tumors: A Population-Based Analysis of Prospective Patient-Reported Outcomes.

BACKGROUND: How to best support patients with neuroendocrine tumors (NETs) remains unclear. Improving quality of care requires an understanding of symptom trajectories. Objective validated assessments of symptoms burden over the course of disease are lacking. This study examined patterns and risk factors of symptom burden in NETs, using patient-reported outcomes. SUBJECTS, MATERIALS, AND METHODS: A retrospective, population-based, observational cohort study of patients with NETs diagnosed from 2004 to 2015, who survived at least 1 year, was conducted. Prospectively collected patient-reported Edmonton Symptom Assessment System scores were linked to provincial administrative health data sets. Moderate-to-severe symptom scores were presented graphically for both the 1st year and 5 years following diagnosis. Multivariable Poisson regression identified factors associated with record of moderate-to-severe symptom scores during the 1st year after diagnosis. RESULTS: Among 2,721 included patients, 7,719 symptom assessments were recorded over 5 years following diagnosis. Moderate-to-severe scores were most frequent for tiredness (40%-51%), well-being (37%-49%), and anxiety (30%-40%). The proportion of moderate-to-severe symptoms was stable over time. Proportion of moderate-to-severe anxiety decreased by 10% within 6 months of diagnosis, followed by stability thereafter. Changes were below 5% for other symptoms. Similar patterns were observed for the 1st year after diagnosis. Primary tumor site, metastatic disease, younger age, higher comorbidity burden, lower socioeconomic status, and receipt of therapy within 30 days of assessment were independently associated with higher risk of elevated symptom burden. CONCLUSION: Patients with NETs have a high prevalence of moderate-to-severe patient-reported symptoms, with little change over time. Patients remain at risk of prolonged symptom burden following diagnosis, highlighting potential unmet needs. Combined with identified patient and disease factors associated with moderate-to-severe symptom scores, this information is important to support symptom management strategies to improve patient-centered care. IMPLICATIONS FOR PRACTICE: This study used population-level, prospectively collected, validated, patient-reported outcome measures to appraise the symptoms burden and trajectory of patients with neuroendocrine tumors (NETs) after diagnosis. It is the largest and most detailed analysis of patient-reported symptoms for NETs. Patients with NETs present a high burden of symptoms at diagnosis that persists up to 5 years later, highlighting unmet needs. Early and comprehensive symptom screening and management programs are needed. This information should serve to devise pathways and policies to better support patients, evaluate supportive interventions, and assess the effectiveness of symptom management at the provider, institutional, and system levels.

Patient-reported symptoms following mastectomy alone or lumpectomy plus radiation for early stage breast cancer: a cohort study.

PURPOSE: Studies examining symptom differences between surgeries for breast cancer patients rarely incorporate the effects of adjuvant treatment choice. We sought to understand differences in patient-reported symptoms between lumpectomy plus radiation and mastectomy in the year following surgery. METHODS: This cohort study used linked administrative datasets. The exposure was defined as lumpectomy plus radiation or mastectomy. The outcomes of moderate-to-severe (score ≥ 4) patient-reported symptoms were obtained using the Edmonton symptom assessment system (ESAS). Line plots were created to determine symptom trajectories in the 12 months following surgery, and the relationships between surgery and each of the nine symptoms were assessed using multivariable analyses. Clinical significance was determined as a difference of 10%. RESULTS: Of 13,865 Stage I-II breast cancer patients diagnosed 2007-2015, 11,497 underwent lumpectomy plus radiation and 2368 underwent mastectomy. Symptom trajectories were similar for all nine symptoms until approximately 5 months postoperatively when they diverged and mastectomy symptoms started becoming more severe. On multivariable analyses, patients undergoing mastectomy were at an increased risk of reporting moderate-to-severe depression (RR 1.19, 95% CI 1.09-1.30), lack of appetite (RR 1.11, 95% CI 1.03-1.20), and shortness of breath (RR 1.16, 95% CI 1.04-1.15) compared to those undergoing lumpectomy plus radiation. CONCLUSIONS: Even with the addition of adjuvant radiation, patients who are treated with lumpectomy fare better in three of nine patient-reported symptoms. Further examination of these differences will assist in better shared decision-making regarding surgical treatments.

Symptom Burden at the End of Life for Neuroendocrine Tumors: An Analysis of 2579 Prospectively Collected Patient-Reported Outcomes.

BACKGROUND: Given a slow course of disease, end-of-life issues are understudied in neuroendocrine tumors (NETs). To date, there are no data regarding symptoms at the end of life. This study examined symptom trajectories and factors associated with high symptom burden in NETs at the end of life. METHODS: We conducted a retrospective cohort study of NET patients diagnosed from 2004 to 2015 and who died between 2007 and 2016, in Ontario, Canada. Prospectively collected patient-reported Edmonton Symptom Assessment System scores were linked to administrative healthcare datasets. Moderate-to-severe symptom scores (≥ 4 out of 10) in the 6 months before death were analyzed, with multivariable modified Poisson regression identifying factors associated with moderate-to-severe symptoms scores. RESULTS: Among 677 NET decedents, 2579 symptom assessments were recorded. Overall, moderate-to-severe scores were most common for tiredness (86%), wellbeing (81%), lack of appetite (75%), and drowsiness (68%), with these proportions increasing as death approached. For symptoms of lack of appetite, drowsiness, and shortness of breath, the increase was steepest in the 8 weeks before death. On multivariable analyses, the risk of moderate-to-severe symptoms was significantly higher in the last 2 months before death and for patients with shorter survival (< 6 months). Women had higher risks of anxiety, nausea, and pain. CONCLUSION: A high prevalence of moderate-to-severe symptoms was observed for NETs at the end of life, not previously described. The proportion of moderate-to-severe symptoms increases steeply as death nears, highlighting an opportunity for improved management. Combined with identified factors associated with moderate-to-severe symptoms, this information is important to improve patient-centred and personalized supportive care for NETs at the end of life.

A Decade in Review: Cancer Care Ontario's Approach to Symptom Assessment and Management.

BACKGROUND: In 2007 Cancer Care Ontario (CCO) implemented standardized systematic symptom evaluation in all cancer patients in Ontario using the Edmonton Symptom Assessment System. The initial implementation did not include symptom management guidance and this limited the success of the implementation. Within a short time, the need for guidance on how to respond to symptoms became apparent. OBJECTIVE: To describe how CCO has approached electronic symptom monitoring and related clinical response to symptom scores. RESULTS: CCO's approach to symptom management includes acknowledgment, assessment, and intervention steps. In partnership with the Program in Evidence Based Care, CCO developed guidance documents for management of each of the symptoms assessed with Edmonton Symptom Assessment System. These materials included an in-depth document similar to the full guidelines created by Program in Evidence Based Care for cancer treatment topics, a shorter pocket guide, and a 1-page algorithm. The guidance was aligned with symptom score severity. The 1-page algorithm was the most popular format of these materials. When time for revisions came, only this document was revised. When additional PRO measures were implemented, the plan ensured that the launch included a bundle of clinician-facing and patient-facing guidance materials together with the measure. All resources are accessible from a mobile-friendly website. CONCLUSIONS: Providing clear guidance for symptom management is an important part of successful PRO measure implementation. Involving a wide range of stakeholders early in the creation of such resources facilitates implementation and team building.

Follow-Up for Resected Gastroenteropancreatic Neuroendocrine Tumours: A Practice Survey of the Commonwealth Neuroendocrine Tumour Collaboration (CommNETS) and the North American Neuroendocrine Tumor Society (NANETS).

OBJECTIVES: There is no consensus regarding optimal follow-up in resected gastroenteropancreatic neuroendocrine tumours (NETs). We aimed to perform a practice survey to ascertain follow-up patterns by health care practitioners and highlight areas of variation that may benefit from further quantitative research. METHODS: A Web-based survey targeted at NET health care providers in Australia, New Zealand, Canada, and the USA was developed by a steering committee of medical oncologists and a research methodologist. Thirty-seven questions elicited information regarding adherence to guidelines, the influence of risk factors on follow-up, and the frequency and choice of modality in follow-up. RESULTS: There were 163 respondents: 59 from Australia, 25 from New Zealand, 46 from Canada, and 33 from the USA (50% medical oncology, 23% surgery, 13% nuclear medicine, and 15% other). Thirty-eight percent of the respondents were "very familiar" with the NCCN NET guidelines, 33% with the ENETS guidelines, and 17% with the ESMO guidelines; however, only 15, 27, and 10%, respectively, found them "very useful"; 63% reported not using guidelines at their institution. The commonest investigations used were CT scans (66%) and chromogranin A (86%). The US respondents were more likely to follow patients up past 5 years, and the Australian respondents utilized more functional and less cross-sectional imaging. When poor prognostic factors were introduced, the respondents recommended more visits and tests. CONCLUSIONS: This large international survey highlights variation in current follow-up practices not well addressed by the current guidelines. More quantitative research is required to inform the development of evidence-based guidelines tailored to the pattern of recurrence in NETs.

Patient and Staff Engagement in Health System Improvement: A Qualitative Evaluation of the Experience-Based Co-design Approach in Canada.

Surveys and interviews were undertaken in Ontario, Canada, with healthcare staff, patients, caregivers and family members to evaluate the adoption and effectiveness of the experience-based co-design (EBCD) approach. EBCD combines patient and staff experiences to identify opportunities for healthcare improvement. Participants reported that EBCD was an effective form of improving experience. Implementation barriers included time, human resources and funding. Suggestions for increased EBCD utilization included funding, training, promotion of success stories, leadership and greater participant involvement. EBCD can be an effective method of identifying and transforming how healthcare services are delivered to improve the patient, caregiver and family experience.

Efficacy of the Rehabilitation Planning Consult for Survivors of Head and Neck Cancer: A Phase 2 Randomized Controlled Trial.

PURPOSE: Survivors of head and neck cancer may have significant lasting impairments and poor access to rehabilitation. To address this, our group developed and evaluated a rehabilitation planning consult (RPC). The RPC is conducted through an initial consultation and a single follow-up session with a rehabilitation professional. During the initial consultation, rehabilitation needs are determined and the survivor sets individualized goals and plans. They then implement their plans independently and are facilitated to evaluate and modify plans as necessary during the follow-up session. METHODS AND MATERIALS: We used a waitlist control design to compare the proportion of participants attaining a minimally importantly different change in quality of life (QOL) on the Short Form 36 Physical Health Summary Score from baseline to 3 months after study enrollment, between patients randomized to receive (n = 77) or wait 14 ± 3 weeks to receive (n = 76) the RPC. Additional outcomes included goal attainment indicators measured using the Brief Rehabilitation Assessment for Survivors of Head and Neck Cancer (BRASH). RESULTS: Of 153 participants recruited, 95 (62%) completed the intervention; 57 were in the immediate (RPC) group and 38 were in the waiting list control (WLC) group. No significant between-group differences were seen in the proportion of patients achieving a minimally important improvement (2.5 units) on the Physical Health Summary Score from baseline to 3 months after recruitment. No between-group differences were seen on any secondary QOL indicators. Among the 67 (RPC n = 42, WLC n = 22) participants who set individualized rehabilitation goals, BRASH scores on goal performance and satisfaction with goal performance were significantly better in the RPC group. CONCLUSIONS: Our results suggest that the RPC may provide benefit in patients' individualized domains of choice among those who set goals, without affecting overall QOL. Future work could refine the subset of patients who benefit and explore the optimal timing and intensity of the intervention.