Development and applicability of a tool for identification of people with intellectual disabilities in need of palliative care (PALLI).

BACKGROUND: Timely identifying people with intellectual disabilities in need of palliative care is important. Therefore, we developed PALLI: a screening tool for deteriorating health, indicative of a limited life expectancy. Here, we aimed to describe development of PALLI and to explore its applicability. METHOD: We used a five-stage mixed-methods procedure to develop PALLI based on knowledge from practice. For exploring applicability, professionals caring for people with intellectual disabilities completed PALLI for 185 people with intellectual disabilities and provided information on applicability after 5-6 months. RESULTS: The final version of PALLI included 39 questions relevant for people with intellectual disabilities. Applicability was adequate: Most professionals found PALLI relevant and reported no ambiguous questions. Added value of PALLI was reflecting on and becoming aware of the process of decline in health. CONCLUSIONS: PALLI shows promising applicability and has potential as a tool for timely identifying people with intellectual disabilities who may benefit from palliative care.

"Never at ease" - family carers within integrated palliative care: a multinational, mixed method study.

BACKGROUND: Family carers manage a wide range of responsibilities in the lives and care of patients receiving palliative care. They fulfil multiple roles and perform activities within different settings. This has immediate consequences on family carers' every-day lives. According to literature, family carers in palliative care are both part of the formal and informal care network, but also persons in need of support. This article aims to investigate 1) burdens and rewards associated with family caregiving and 2) what family carers find helpful in their contact with professionals from integrated palliative care initiatives (IPC-i) and other services. METHODS: Family carers looking after patients with cancer, chronic obstructive pulmonary disease or chronic heart failure were purposefully recruited at 22 IPC-i in Belgium, Germany, Hungary, the Netherlands and the United Kingdom in the course of the project "Patient-centred palliative care pathways in advanced cancer and chronic disease" (InSup-C). Semi-structured interviews (n = 156) and 87 quantitative questionnaires (CRA, POS, CANHELP Lite) were conducted with family carers. Interviews were analysed with transnationally agreed thematic codes (MAXQDA or NVivo). Statistical tests (SPSS) were carried out in accordance with the characteristic value of the items and distributions. RESULTS: On average, quantitative data showed moderate burden, but the qualitative findings indicated that this burden might be underrated. There is some evidence that IPC-i with well-developed professional care networks and communication systems relieved family carers' burden by direct and indirect interventions; e.g. provision of night shift nurses or psychological support. Needs of family carers were similar in all participating countries. However, in all countries IPC-i mostly offered one-off events for family carers, lacking systematic or institutionalised support structures. CONCLUSIONS: Data suggest that, most IPC-i did not pay enough attention to the needs of most family carers, and did not offer proactive care and access to supportive resources to them (e.g. training, respite care, access to resources). We recommend recognizing family carers as part of the 'unit of care' and partner in caregiving, to improve their knowledge about, and access to, and the support available.

Palliative care for patients with Parkinson's disease: study protocol for a mixed methods study.

BACKGROUND: Parkinson's disease (PD) is a chronic, progressive neurological disorder with many intractable consequences for patients and their family caregivers. Little is known about the possibilities that palliative care could offer to patients and their proxies. Guidelines strongly recommend palliative care to improve the quality of life and - if needed - the quality of dying. However, providing palliative care to persons with PD involves specific challenges. For example, a timely initiation of palliative interventions is difficult because due to the gradually progressive nature of PD, there is often no clear marker for the transition from curative towards palliative care. Furthermore, there is little evidence to indicate which palliative care interventions are effective. Here, we describe the contours of a study that aims to examine the experiences of patients, (bereaved) family caregivers and professionals, with the aim of improving our knowledge about palliative care needs in PD. METHODS/DESIGN: We will perform a mixed methods study to evaluate the experiences of patients, (bereaved) family caregivers and palliative care professionals. In this study, we focus on Quality of Life, Quality of Care, perceived symptoms, caregiver burden and collaboration between professionals. In phase 1, we will retrospectively explore the views of bereaved family caregivers and professionals by conducting individual interviews and focus group interviews. In phase 2, 5-15 patients with PD and their family caregiver will be followed prospectively for 8-12 months. Data collection will involve semi-structured interviews and questionnaires at three consecutive contact moments. Qualitative data will be audio recorded, transcribed and analyzed using CAQDAS. If patients pass away during the study period, a bereavement interview will be done with the closest family caregiver. DISCUSSION: This study will offer a broad perspective on palliative care, and the results can be used to inform a palliative care protocol for patients with PD. By describing the experiences of patients, (bereaved) family caregivers and professionals with palliative care, this investigation will also establish an important ground for future intervention research.

Training mental health professionals in suicide practice guideline adherence: Cost-effectiveness analysis alongside a randomized controlled trial.

BACKGROUND: There is a lack of information on the cost-effectiveness of suicide prevention interventions. The current study examines the cost-effectiveness of a multifaceted structured intervention aiming to improve adherence to the national suicide practice guideline in comparison with usual implementation. METHODS: In the intervention condition, professionals of psychiatric departments were trained using an e-learning supported Train-the-Trainer program. Newly admitted suicidal patients were assessed as soon as their department was trained and at 3 months follow-up. The primary outcome was improvement in suicide ideation. Missing cost and effect data were imputed using multiple imputation. Cost-effectiveness planes were plotted, and cost-effectiveness acceptability curves were estimated. RESULTS: For the total group of suicidal patients (n=566), no effect of the intervention on suicide ideation or costs was found. For a subgroup of depressed suicidal patients (n=154, intervention=75, control=79), mean level of suicide ideation decreased with 2.7 extra points in the intervention condition, but this was not statistically significant. For this subgroup, the intervention may be considered cost-effective in comparison with usual implementation if society is willing to pay≥€ 6100 per unit of effect on the suicide ideation scale extra. LIMITATIONS: Considering the cost outcomes, we had almost no cases that were complete, and heavily relied on statistical techniques to impute the missing data. Also, diagnoses were not derived from structured clinical interviews. CONCLUSIONS: We presented the first randomized trial (trial registration: The Netherlands Trial Register (NTR3092 www.trialregister.nl)) on cost-effectiveness of a suicide practice guideline implementation in mental health care. The intervention might be considered cost-effective for depressed suicidal patients if society is willing to make substantial investments.

Applying computer adaptive testing to optimize online assessment of suicidal behavior: a simulation study.

BACKGROUND: The Internet is used increasingly for both suicide research and prevention. To optimize online assessment of suicidal patients, there is a need for short, good-quality tools to assess elevated risk of future suicidal behavior. Computer adaptive testing (CAT) can be used to reduce response burden and improve accuracy, and make the available pencil-and-paper tools more appropriate for online administration. OBJECTIVE: The aim was to test whether an item response-based computer adaptive simulation can be used to reduce the length of the Beck Scale for Suicide Ideation (BSS). METHODS: The data used for our simulation was obtained from a large multicenter trial from The Netherlands: the Professionals in Training to STOP suicide (PITSTOP suicide) study. We applied a principal components analysis (PCA), confirmatory factor analysis (CFA), a graded response model (GRM), and simulated a CAT. RESULTS: The scores of 505 patients were analyzed. Psychometric analyses showed the questionnaire to be unidimensional with good internal consistency. The computer adaptive simulation showed that for the estimation of elevation of risk of future suicidal behavior 4 items (instead of the full 19) were sufficient, on average. CONCLUSIONS: This study demonstrated that CAT can be applied successfully to reduce the length of the Dutch version of the BSS. We argue that the use of CAT can improve the accuracy and the response burden when assessing the risk of future suicidal behavior online. Because CAT can be daunting for clinicians and applied scientists, we offer a concrete example of our computer adaptive simulation of the Dutch version of the BSS at the end of the paper.

Nurses' perceptions of proactive palliative care: a Dutch focus group study.

BACKGROUND: Early identification of pain and other problems is an important aspect of palliative care. Although nurses have an important role in palliative care, little is known about nurses' perceptions of proactive palliative care. OBJECTIVES: This study aimed to explore nurses' perceptions and experiences of proactive identification of problems and requirements among patients with palliative care needs. METHODS: This was a qualitative study in which 16 nurses working in palliative care took part in two focus groups. RESULTS: All of the nurses underlined the importance of their early involvement in palliative care. Anticipation of possible future problems, advice and information about end-of-life care and palliative care facilities, and assessment of patients' wishes regarding care and preferred place of death were mentioned as important aspects of the early identification of problems and needs. Four themes were identified: the start of proactive palliative care; communication, support, and guidance; advocating for patients; and cooperation with health professionals. CONCLUSIONS: Nurses' involvement in proactive palliative care is important in supporting patients' palliative care management. Ongoing education, focused on multidisciplinary communication and cooperation, professional development, and empowerment of nurses, remains of utmost importance.

Reducing patients' suicide ideation through training mental health teams in the application of the Dutch multidisciplinary practice guideline on assessment and treatment of suicidal behavior: study protocol of a randomized controlled trial.

BACKGROUND: To strengthen suicide prevention skills in mental health care in The Netherlands, multidisciplinary teams throughout the country are trained in the application of the new Dutch guideline on the assessment and treatment of suicidal behavior. Previous studies have shown beneficial effects of additional efforts for guideline implementation on professionals' attitude, knowledge, and skills. However, the effects on patients are equally important, but are rarely measured. The main objective of this study is to examine whether patients of multidisciplinary teams who are trained in guideline application show greater recovery from suicide ideation than patients of untrained teams. METHODS/DESIGN: This is a multicentre cluster randomized controlled trial (RCT), in which multidisciplinary teams from mental health care institutions are matched in pairs, and randomly allocated to either the experimental or control condition. In the experimental condition, next to the usual dissemination of the guideline (internet, newsletter, books, publications, and congresses), teams will be trained in the application of the guideline via a 1-day small interactive group training program supported by e-learning modules. In the control condition, no additional actions next to usual dissemination of the guideline will be undertaken.Assessments at patient level will start when the experimental teams are trained. Assessments will take place upon admission and after 3 months, or earlier if the patient is discharged. The primary outcome is suicide ideation. Secondary outcomes are non-fatal suicide attempts, level of treatment satisfaction, and societal costs. Both a cost-effectiveness and cost-utility analysis will be performed. The effects of the intervention will be examined in multilevel models. DISCUSSION: The strengths of this study are the size of the study, RCT design, training of complete multidisciplinary teams, and the willingness of both management and staff to participate. TRIAL REGISTRATION: Netherlands trial register: NTR3092.

Improving the application of a practice guideline for the assessment and treatment of suicidal behavior by training the full staff of psychiatric departments via an e-learning supported Train-the-Trainer program: study protocol for a randomized controlled trial.

BACKGROUND: In 2012, in The Netherlands a multidisciplinary practice guideline for the assessment and treatment of suicidal behavior was issued. The release of guidelines often fails to change professional behavior due to multiple barriers. Structured implementation may improve adherence to guidelines. This article describes the design of a study measuring the effect of an e-learning supported Train-the-Trainer program aiming at the training of the full staff of departments in the application of the guideline. We hypothesize that both professionals and departments will benefit from the program. METHOD: In a multicenter cluster randomized controlled trial, 43 psychiatric departments spread over 10 regional mental health institutions throughout The Netherlands will be clustered in pairs with respect to the most prevalent diagnostic category of patients and average duration of treatment. Pair members are randomly allocated to either the experimental or the control condition. In the experimental condition, the full staff of departments, that is, all registered nurses, psychologists, physicians and psychiatrists (n = 532, 21 departments) will be trained in the application of the guideline, in a one-day small interactive group Train-the-Trainer program. The program is supported by a 60-minute e-learning module with video vignettes of suicidal patients and additional instruction. In the control condition (22 departments, 404 professionals), the guideline shall be disseminated in the traditional way: through manuals, books, conferences, internet, reviews and so on. The effectiveness of the program will be assessed at the level of both health care professionals and departments. DISCUSSION: We aim to demonstrate the effect of training of the full staff of departments with an e-learning supported Train-the-Trainer program in the application of a new clinical guideline. Strengths of the study are the natural setting, the training of full staff, the random allocation to the conditions, the large scale of the study and the willingness of both staff and management to participate in the study. TRIAL REGISTRATION: Dutch trial register: NTR3092.

The effectiveness of family-based cognitive-behavior grief therapy to prevent complicated grief in relatives of suicide victims: the mediating role of suicide ideation.

Grief interventions are more effective for high risk individuals. The presence of suicide ideation following suicide bereavement was examined to determine whether it indicates a high risk status. Using data from a randomized controlled trial (n = 122) on the effectiveness of cognitive-behavior therapy, the effect of suicide ideation on the effectiveness of grief therapy on the bereavement outcome at 13 months post loss was examined. Results show that suicide ideators more often have a history of mental disorder and suicidal behavior than non-ideators, and suicide ideation indicates a high risk for adverse bereavement outcome. Grief therapy likely reduces the risk of maladaptive grief reactions among suicide ideators. Therefore, suicide ideators may benefit from grief therapy following a loss through suicide.

Obstacles to the delivery of primary palliative care as perceived by GPs.

INTRODUCTION: In order to facilitate GPs in their work and increase the possibilities for patients to remain at home, it is important to identify the obstacles which hinder the delivery of primary palliative care. From previous research we learned about some of the problems experienced by GPs. In this survey we aimed to identify the prevalence of such problems in providing palliative care and its determinants. METHODS: The prevalence of obstacles and its determinants were identified by a questionnaire to 320 GPs in three regions of the Netherlands. Obstacles were grouped as follows: communication, organisation & co-ordination of care, knowledge & expertise, integrated care, time for relatives. The potential determinants were GP characteristics and expertise development activities. RESULTS: The response rate was 62.3%. GPs experienced considerable obstacles in all aspects of palliative care. The most prevalent were: problems with bureaucratic procedures (83.9%), the time necessary to arrange home care technology (61.1%) and the difficulties accompanied with the wish or necessity to obtain extra care (56.3%). In general, more years of GP experience and the participation in (multidisciplinary) case discussions were associated with less perceived obstacles. DISCUSSION: Based on the results of our survey policymakers and practitioners can plan and set priorities in handling the obstacles. There is a high necessity of firstly overcoming the barriers within organisation and coordination of care. Furthermore, our study can help in choosing the (additional) expertise needed in the future and in the realisation of the preferred expertise advancement activities.

Living on borrowed time: experiences in palliative care.

OBJECTIVE: To gain insight into the experiences of a palliative care patient and her husband who were living on borrowed time. METHODS: A qualitative single case design was used. Systematic content analysis of the interview data, obtained in an in-depth semi-structured interview, from the husband and wife was conducted to extract themes relating to living on borrowed time. RESULTS: Three themes were identified: shifts in the interpretation of physical signs and symptoms, altered view of the future and altered choices and priorities. CONCLUSION: The identified themes lead to a better understanding of the phenomenon of living on borrowed time. Yet, refinement of, and variation within the themes still need to be studied in order to get more grips on the themes and to be better able to help patients to integrate the 'new reality'. PRACTICE IMPLICATIONS: Our findings can be used to support professionals in the practical application of care when their patients need to integrate the 'new reality' and seek new equilibrium, e.g. converted into a conversational guide, or used for educational purposes.