Development of a Patient Decision Aid for Rectal Cancer Patients with Clinical Complete Response after Neo-Adjuvant Treatment.

Surgery is the primary component of curative treatment for patients with rectal cancer. However, patients with a clinical complete response (cCR) after neo-adjuvant treatment may avoid the morbidity and mortality of radical surgery. An organ-sparing strategy could be an oncological equivalent alternative. Therefore, shared decision making between the patient and the healthcare professional (HCP) should take place. This can be facilitated by a patient decision aid (PtDA). In this study, we developed a PtDA based on a literature review and the key elements of the Ottawa Decision Support Framework. Additionally, a qualitative study was performed to review and evaluate the PtDA by both HCPs and former rectal cancer patients by a Delphi procedure and semi-structured interviews, respectively. A strong consensus was reached after the first round (I-CVI 0.85-1). Eleven patients were interviewed and most of them indicated that using a PtDA in clinical practice would be of added value in the decision making. Patients indicated that their decisional needs are centered on the impact of side effects on their quality of life and the outcome of the different options. The PtDA was modified taking into account the remarks of patients and HCPs and a second Delphi round was held. The second round again showed a strong consensus (I-CVI 0.87-1).

The use of electronic Patient Reported Outcomes in follow-up after palliative radiotherapy: A survey study in Belgium.

Objective: Electronic Patient-Reported Outcome Measures (ePROMs) could be used to monitor patients' symptoms after treatment. However, ePROM implementation in clinical practice has been challenging, especially in (palliative) radiation oncology. The aim of this study was to explore the opinions of healthcare providers (HCP) active in radiation oncology in Belgium on the use of ePROMs for symptom follow-up after palliative radiotherapy. Methods: An anonymous online survey was conducted with different HCP in radiation oncology in Belgium. Participants were recruited through several professional organizations with approximately 390 members actively working in the field of radiation oncology. The survey used was a self-developed questionnaire, based on existing literature on implementation of (e)PROMs in cancer care, our previous research on this topic as well as our personal experience in the field of oncology and palliative care. Results: Of the 128 respondents, 26% had experience with ePROMs in clinical practice. Eighty-four percent considered ePROMs beneficial for patients' health and symptom knowledge, symptom self-management and active participation in care. ePROMs could help HCP to focus on detection of relevant symptoms and improve their management. Almost 75% were willing to implement and use ePROMs. Assigning ePROM introduction and follow-up to a dedicated person, such as a nurse navigator, was suggested to promote ePROM implementation and use in clinical practice. Conclusion: Despite limited experience with ePROMs in clinical care for palliative radiotherapy patients, the majority of respondents is willing to implement and use ePROMs for this particular patient population. Innovation: This is one of the first studies specifically focusing on experiences and opinions of HCP in radiation oncology on the use of ePROMs for symptom follow-up in palliative radiotherapy. HCP should be actively involved in implementation of ePROMs after palliative radiotherapy, to translate their vision of their ideals in practice.

Development of an intervention (PICASO) to optimise the palliative care capacity of social workers in Flanders: a study protocol based on phase I of the Medical Research Council framework.

INTRODUCTION: An important challenge for future palliative care delivery is the growing number of people with palliative care needs compared with the limited qualified professional workforce. Existing but underused professional potential can further be optimised. This is certainly the case for social work, a profession that fits well in multidisciplinary palliative care practice but whose capacities remain underused. This study aims to optimise the palliative care capacity of social workers in Flanders (Belgium) by the development of a Palliative Care Program for Social Work (PICASO). METHODS AND ANALYSIS: This protocol paper covers the steps of the development of PICASO, which are based on phase I of the Medical Research Council framework. However, additional steps were added to the original framework to include more opportunities for stakeholder involvement. The development of PICASO follows an iterative approach. First, we will identify existing evidence by reviewing the international literature and describe the problem by conducting quantitative and qualitative research among Flemish social workers. Second, we will further examine practice and identify an appropriate intervention theory by means of expert panels. Third, the process and outcomes will be depicted in a logic model. ETHICS AND DISSEMINATION: Ethical approval for this study was given by the KU Leuven Social and Societal Ethics Committee (SMEC) on 14 April 2021 (reference number: G-2020-2247-R2(MIN)). Findings will be disseminated through professional networks, conference presentations and publications in scientific journals.

Using ePROMs for follow-up after palliative radiotherapy: An exploratory study with patients and health care providers.

OBJECTIVES: Patients treated with palliative radiotherapy may experience symptoms decreasing their quality of life. Electronic patient-reported outcome measures (ePROMs) could provide an opportunity to follow-up patients after treatment. METHODS: A mixed-method study was performed using self-constructed questionnaires, focus groups and interviews with patients and health care professionals (HCP). A qualitative approach was used to code the data. RESULTS: Forty-two patients, 21 radiation-oncologists, 15 general practitioners (GPs) and 24 home-care nurses completed a questionnaire. Ten patients, 6 radiation-oncologists, 14 GPs and 5 nurses were interviewed or participated in a focus group. Although patients and HCP are satisfied with current care, they believe ePROMs could improve follow-up, communication, continuity of care and self-management of symptoms. An easy to use, versatile ePROM platform seems to be important for successful implementation. Self-care tips and contact information should be added to relevant ePROM-questions, on both physical and psychological symptoms. CONCLUSION: Patients and HCP agree that ePROMs could improve systematical clinical follow-up after palliative radiotherapy, with self-management support being the primary objective of such a system. Practice implications ePROMs after palliative radiotherapy seem feasible, the exact patient population that could benefit the most will need to be explored further; as the palliative population is very diverse.

Are family carers part of the care team providing end-of-life care? A qualitative interview study on the collaboration between family and professional carers.

BACKGROUND: The attention of healthcare professionals is directed mainly towards the recipients of care and often insufficiently towards family carers. However, an effective collaboration between professionals and family carers is vital to provide quality palliative and end-of-life care. Such collaboration is under-studied in a palliative care context. AIM: This study aimed to investigate how family carers of people who live at home with a life-limiting chronic illness experience and perceive collaboration with different healthcare professionals in the last phase of life. DESIGN: Face-to-face semi-structured interviews were conducted with the primary family carers of people with a life-limiting chronic illness. Interpretative phenomenological analysis was used to analyse the data. SETTING/PARTICIPANTS: A heterogeneous sample of 30 family carers of people with cancer, heart failure or dementia was recruited through a variety of care providers and services, in order to reflect the heterogeneity of caregiving in serious illness. RESULTS: Five main themes emerged from interpretative phenomenological analysis that describe the quality of the collaboration between family carers and professionals: respecting family carers both as someone with care needs and as a member of the care team; the continuous availability and accessibility of healthcare professionals; the provision of information and communication including family carer issues; the coordination of care between all parties and contextual factors. The dominant experience by family carers was one of missed opportunities across these themes. CONCLUSIONS: This qualitative study about the experiences and perceptions of family carers of people with a chronic life-limiting illness living at home regarding the collaboration with different healthcare providers in the last phase life, showed that family carers experience a lot of possibilities, but perceive missed opportunities as well, for healthcare professionals to effectively collaborate with them for palliative care.

Family carer support in home and hospital: a cross-sectional survey of specialised palliative care.

OBJECTIVES: To evaluate: (1) to what extent family carers of people supported by specialised palliative care services felt they had been provided with information, support and aftercare and (2) how this varied by type of palliative care service, length of enrolment and characteristics of deceased. METHODS: A cross-sectional postal survey was conducted using a structured questionnaire with nine items on information, support and aftercare provided by specialised palliative care services to family carers. Flemish family carers of people who had made use of specialised palliative care services at home or in hospital were contacted. RESULTS: Of all primary family carers (response rate of 53.5% resulting in n=1504), 77.7% indicated they were asked frequently by professionals how they were feeling. Around 75% indicated they had been informed about specific end-of-life topics and around 90% felt sufficiently supported before and immediately after the death. Family carers of people who had died in a palliative care unit, compared with other types of specialised palliative care services, indicated having received more information, support and aftercare. CONCLUSIONS: Family carers evaluate the professional assistance provided more positively when death occurred in a palliative care unit. Policy changes might be needed to reach the same level of care across all specialised palliative care services.

Does using the interRAI Palliative Care instrument reduce the needs and symptoms of nursing home residents receiving palliative care?

OBJECTIVE: This study aimed to evaluate whether using the interRAI Palliative Care instrument (the interRAI PC) in nursing homes is associated with reduced needs and symptoms in residents nearing the end of their lives. METHOD: A quasi-experimental pretest-posttest study using the Palliative care Outcome Scale (POS) was conducted to compare the needs and symptoms of residents nearing the end of their lives in the control and intervention nursing homes. Care professionals at the intervention nursing homes filled out the interRAI PC over the course of a year for all residents aged 65 years and older who were nearing the end of their lives. This intervention was not implemented in the control nursing homes. RESULTS: At baseline, POS scores in the intervention nursing homes were lower (more favorable) than in the control nursing homes on the items "pain", "other symptoms", "family anxiety", and the total POS score. Posttest POS scores for "wasted time" were higher (less favorable) than pretest scores in the intervention nursing homes. In the intervention nursing homes where care professionals did not have prior experience with the interRAI Long-Term Care Facilities (LTCF) assessment instrument (n = 8/15), total POS scores were lower (more favorable) at posttest. SIGNIFICANCE OF RESULTS: One year after introducing the interRAI PC, no reduction in residents' needs and symptoms were detected in the intervention nursing homes. However, reductions in needs and symptoms were found in the subgroup of intervention nursing homes without prior experience with the interRAI LTCF instrument. This may suggest that the use of an interRAI instrument other than the interRAI PC specifically can improve care. Future research should aim at replicating this research with a long-term design in order to evaluate the effect of integrating the use of the interRAI PC in the day-to-day practices at nursing homes.

The use of decision aids on early detection of prostate cancer: views of men and general practitioners.

BACKGROUND AND OBJECTIVE: While decision support tools such as decision aids can contribute to shared decision making, implementing these tools in daily practice is challenging. To identify and address issues around the use of decision support tools in routine care, this study explores the views of men and general practitioners on using a DA for early detection of prostate cancer. METHODS, SETTING AND PARTICIPANTS: Group discussions and semi-structured interviews were carried out with 43 men and 16 general practitioners familiar with a previously developed decision aid. Data were analysed using qualitative description. RESULTS: Views on using the decision support tool could be classified into four categories: no need for decision making, need for support, perceived benefit and practical barriers. For each category, several underlying themes could be identified that reflect the absence or presence of prerequisites to successful decision support delivery. DISCUSSION AND CONCLUSION: While men and general practitioners generally have positive attitudes to shared decision making, for both parties attitudes such as not agreeing that there is a decision to be made and doubts on the beneficence of using DAs were identified as factors that may hinder the use of a DA in clinical practice. Participants formulated strategies to support the use of DAs, mainly supplementing DAs with short tools and investing in both training programmes and large-scale awareness raising of the general public.

Palliative care needs and symptoms of nursing home residents with and without dementia: A cross-sectional study.

AIM: The aims of the present study were: (i) to describe palliative care needs and symptoms of older adults anticipated to be in the last year of their life in Flemish nursing homes (Belgium); and (ii) to evaluate whether these needs differ between residents with and without dementia. METHODS: A cross-sectional study was carried out in 2014. Nurses and nursing assistants in 15 Flemish nursing homes (Belgium) completed the Palliative care Outcome Scale for 109 residents with palliative care needs. RESULTS: Pain, as well as other physical symptoms, was present in more than half of the nursing home residents according to caregivers. The most prominent needs occurred on psychosocial and spiritual domains, such as patient anxiety, support, finding life worth living and self-worth. Caregivers reported that residents with dementia experienced fewer physical symptoms apart from pain than did residents without dementia (coeffficient -0.73, 95% CI -1.18-0.84; P = 0.001. Furthermore, residents with dementia received higher scores on the items "support" (coefficient 0.75; 95% CI 0.15-1.34, P = 0.015), "life worthwhile" (coeffficient 0.58; 95% CI 0.090-1.07, P = 0.020) and "self-worth" (coefficient 0.58, 95% CI 0.13-1.03, P = 0.012). CONCLUSIONS: According to caregivers, residents with dementia experienced fewer other physical symptoms (e.g. nausea) than residents without dementia. This, however, might be a result of an underdetection of other symptoms in nursing home residents with dementia. Furthermore, most challenges in nursing homes lie within the spiritual and psychosocial domains of palliative care, particularly in people with dementia. These aspects should be integrated in the professional education of caregivers. Assessment tools might be of help to improve the identification of needs and symptoms. Geriatr Gerontol Int 2017; 17: 1501-1507.

Usefulness, feasibility and face validity of the interRAI Palliative Care instrument according to care professionals in nursing homes: A qualitative study.

BACKGROUND: Nursing homes are important locations for palliative care. High quality palliative care requires an evaluation of the different care needs of the nursing home residents. The interRAI Palliative Care instrument is a comprehensive assessment that evaluates the needs and preferences of adults receiving palliative care. OBJECTIVES: This study aims to evaluate the usefulness, feasibility and face validity of the interRAI Palliative Care instrument. DESIGN: A qualitative study was conducted, based on the abductive reasoning approach. SETTING: Fifteen nursing homes in Flanders (Belgium). PARTICIPANTS: Calls for participation were sent out by four umbrella organizations of Flemish nursing homes (Belgium) and at a national conference for nursing home staff. Nineteen care professionals (nurses, certified nursing assistants, psychologists, physiotherapists, quality coordinators and directors) of 15 nursing homes voluntarily agreed to participate in the study. METHODS: During one year, care professionals evaluated the needs and preferences of all nursing home residents receiving palliative care by means of the interRAI Palliative Care instrument. Data on the usefulness, feasibility and face validity of the interRAI Palliative Care instrument were derived from notes, semi-structured interviews and focus groups with participating care professionals and were thematically analyzed and synthesized. Data were gathered between December 2013 and March 2015. RESULTS: In general, the interRAI Palliative Care (interRAI PC instrument) is a useful instrument according to care professionals in nursing homes. However, care professionals made a series of recommendations in order to optimize the usefulness of the instrument. The interRAI PC instrument is not always feasible to complete because of organizational reasons. Furthermore, the face validity of the instrument could be improved since certain items are incomplete, lacking, redundant or too complex. CONCLUSIONS: Findings highlight the importance of adapting the content of the interRAI Palliative Care instrument for use in nursing homes. Furthermore, the use of the instrument should be integrated in the organization of daily care routines in the nursing homes. Tackling the critical remarks of care professionals will help to optimize the interRAI Palliative Care instrument and hence support palliative care of high quality in nursing homes.

Informed palliative care in nursing homes through the interRAI Palliative Care instrument: a study protocol based on the Medical Research Council framework.

BACKGROUND: Nursing homes are important locations for palliative care. Through comprehensive geriatric assessments (CGAs), evaluations can be made of palliative care needs of nursing home residents. The interRAI Palliative Care instrument (interRAI PC) is a CGA that evaluates diverse palliative care needs of adults in all healthcare settings. The evaluation results in Client Assessment Protocols (CAPs: indications of problems that need addressing) and Scales (e.g. Palliative Index for Mortality (PIM)) which can be used to design, evaluate and adjust care plans. This study aims to examine the effect of using the interRAI PC on the quality of palliative care in nursing homes. Additionally, it aims to evaluate the feasibility and validity of the interRAI PC. METHODS: This study covers phases 0, I and II of the Medical Research Council (MRC) framework for designing and evaluating complex interventions, with a longitudinal, quasi-experimental pretest-posttest design and with mixed methods of evaluation. In phase 0, a systematic literature search is conducted. In phase I, the interRAI PC is adapted for use in Belgium and implemented on the BelRAI-website and a practical training is developed. In phase II, the intervention is tested in fifteen nursing homes. Participating nursing homes fill out the interRAI PC during one year for all residents receiving palliative care. Using a pretest-posttest design with quasi-random assignment to the intervention or control group, the effect of the interRAI PC on the quality of palliative care is evaluated with the Palliative care Outcome Scale (POS). Psychometric analysis is conducted to evaluate the predictive validity of the PIM and the convergent validity of the CAP 'Mood' of the interRAI PC. Qualitative data regarding the usability and face validity of the instrument are collected through focus groups, interviews and field notes. DISCUSSION: This is the first study to evaluate the validity and effect of the interRAI PC in nursing homes, following a methodology based on the MRC framework. This approach improves the study design and implementation and will contribute to a higher generalizability of results. The final result will be a psychometrically evaluated CGA for nursing home residents receiving palliative care. TRIAL REGISTRATION: ClinicalTrials.gov NCT02281032. Registered October 30th, 2014.

A comparative analysis of comprehensive geriatric assessments for nursing home residents receiving palliative care: a systematic review.

BACKGROUND/OBJECTIVES: Nursing homes become important locations for palliative care. By means of comprehensive geriatric assessments (CGAs), an evaluation can be made of the different palliative care needs of nursing home residents. This review aims to identify all CGAs that can be used to assess palliative care needs in long-term care settings and that have been validated for nursing home residents receiving palliative care. The CGAs are evaluated in terms of psychometric properties and content comprehensiveness. DESIGN: A systematic literature search in electronic databases MEDLINE, Web of Science, EMBASE, Cochrane, CINAHL, and PsycInfo was conducted for the years 1990 to 2012. SETTING: Nursing homes. PARTICIPANTS: Nursing home residents with palliative care needs. MEASUREMENTS: Psychometric data on validity and reliability were extracted from the articles. The content comprehensiveness of the identified CGAs was analyzed, using the 13 domains for a palliative approach in residential aged care of the Australian Government Department of Health and Aging. RESULTS: A total of 1368 articles were identified. Seven studies met our inclusion criteria, describing 5 different CGAs that have been validated for nursing home residents with palliative care needs. All CGAs demonstrate moderate to high psychometric properties. The interRAI Palliative Care instrument (interRAI PC) covers all domains for a palliative approach in residential aged care of the Australian Government Department of Health and Aging. The McMaster Quality of Life Scale covers nine domains. All other CGAs cover seven domains or fewer. CONCLUSIONS: The interRAI PC and the McMaster Quality of Life Scale are considered to be the most comprehensive CGAs to evaluate the needs and preferences of nursing home residents receiving palliative care. Future research should aim to examine the effectiveness of the identified CGAs and to further validate the CGAs for nursing home residents with palliative care needs.

Barriers to advance care planning in cancer, heart failure and dementia patients: a focus group study on general practitioners' views and experiences.

BACKGROUND: The long-term and often lifelong relationship of general practitioners (GPs) with their patients is considered to make them the ideal initiators of advance care planning (ACP). However, in general the incidence of ACP discussions is low and ACP seems to occur more often for cancer patients than for those with dementia or heart failure. OBJECTIVE: To identify the barriers, from GPs' perspective, to initiating ACP and to gain insight into any differences in barriers between the trajectories of patients with cancer, heart failure and dementia. METHOD: Five focus groups were held with GPs (n = 36) in Flanders, Belgium. The focus group discussions were transcribed verbatim and analyzed using the method of constant comparative analysis. RESULTS: THREE TYPES OF BARRIERS WERE DISTINGUISHED: barriers relating to the GP, to the patient and family and to the health care system. In cancer patients, a GP's lack of knowledge about treatment options and the lack of structural collaboration between the GP and specialist were expressed as barriers. Barriers that occured more often with heart failure and dementia were the lack of GP familiarity with the terminal phase, the lack of key moments to initiate ACP, the patient's lack of awareness of their diagnosis and prognosis and the fact that patients did not often initiate such discussions themselves. The future lack of decision-making capacity of dementia patients was reported by the GPs as a specific barrier for the initiation of ACP. CONCLUSION: The results of our study contribute to a better understanding of the factors hindering GPs in initiating ACP. Multiple barriers need to be overcome, of which many can be addressed through the development of practical guidelines and educational interventions.

How do patients between the age of 65 and 75 use a web-based decision aid for treatment choice in localized prostate cancer?

OBJECTIVES: This study was designed to evaluate the use of a web-based decision aid by a 65plus patient group in their decision-making process for treatment of localized prostate cancer. Of particular interest was the use of technology features such as patients' statements, comparative tables, and a values clarification tool. METHODS: One hundred men from the University Hospital of Leuven campus, Gasthuisberg, were invited to use the web-based decision aid in their decision-making process. Twenty-six men were excluded based on non- or limited use of the decision aid. Of the remaining 74 men, user specifications, decision aid surfing characteristics by means of web-log data, and especially the use of technology features were analyzed. RESULTS: Men spent on average 30 minutes on the web-based decision aid. Most time was spent on the pages with information on treatment options. These pages were also most frequently accessed. The use of the feature 'comparative tables' was the highest, followed by the 'values clarification tool'. According to age (<70 or >70 years) differences were observed for the time spent on the decision aid, the pages accessed, and the use of the technology features. CONCLUSION: Despite concerns about the usability of a web-based decision aid for elderly patients, these results indicated that the majority of 65plus persons with good internet skills use a web-based decision aid as well as its incorporated technology features.