Content analysis of Advance Directives completed by patients with advanced cancer as part of an Advance Care Planning intervention : insights gained from the ACTION trial

Purpose Writing an Advance Directive (AD) is often seen as a part of Advance Care Planning (ACP). ADs may include specific preferences regarding future care and treatment and information that provides a context for healthcare professionals and relatives in case they have to make decisions for the patient. The aim of this study was to get insight into the content of ADs as completed by patients with advanced cancer who participated in ACP conversations. Methods A mixed methods study involving content analysis and descriptive statistics was used to describe the content of completed My Preferences forms, an AD used in the intervention arm of the ACTION trial, testing the effectiveness of the ACTION Respecting Choices ACP intervention. Results In total, 33% of 442 patients who received the ACTION RC ACP intervention completed a My Preferences form. Document completion varied per country: 10.4% (United Kingdom), 20.6% (Denmark), 29.2% (Belgium), 41.7% (the Netherlands), 61.3% (Italy) and 63.9% (Slovenia). Content analysis showed that 'maintaining normal life' and 'experiencing meaningful relationships' were important for patients to live well. Fears and worries mainly concerned disease progression, pain or becoming dependent. Patients hoped for prolongation of life and to be looked after by healthcare professionals. Most patients preferred to be resuscitated and 44% of the patients expressed maximizing comfort as their goal of future care. Most patients preferred 'home' as final place of care. Conclusions My Preferences forms provide some insights into patients' perspectives and preferences. However, understanding the reasoning behind preferences requires conversations with patients

What is the optimal timing for implant placement in oral cancer patients? A scoping literature review:A scoping literature review

Background Oral cancer patients can benefit from dental implant placement. Traditionally, implants are placed after completing oncologic treatment (secondary implant placement). Implant placement during ablative surgery (primary placement) in oral cancer patients seems beneficial in terms of early start of oral rehabilitation and limiting additional surgical interventions. Guidelines on the ideal timing of implant placement in oral cancer patients are missing. Objective To perform a scoping literature review on studies examining the timing of dental implant placement in oral cancer patients and propose a clinical practice recommendations guideline. Methods A literature search for studies dealing with primary and/or secondary implant placement in MEDLINE was conducted (last search December 27, 2019). The primary outcome was 5-year implant survival. Results Sixteen out of 808 studies were considered eligible. Both primary and secondary implant placement showed acceptable overall implant survival ratios with a higher pooled 5-year implant survival rate for primary implant placement 92.8% (95% CI: 87.1%-98.5%) than secondary placed implants (86.4%, 95% CI: 77.0%-95.8%). Primary implant placement is accompanied by earlier prosthetic rehabilitation after tumor surgery. Conclusion Patients with oral cancer greatly benefit from, preferably primary placed, dental implants in their prosthetic rehabilitation. The combination of tumor surgery with implant placement in native mandibular bone should be provided as standard care

Untangling the relationship between negative illness perceptions and worse quality of life in patients with advanced cancer:A study from the population-based PROFILES registry

Purpose Quality of life (QoL) is an important yet complex outcome of care in patients with advanced cancer. QoL is associated with physical and psychosocial symptoms and with patients’ illness perceptions (IPs). IPs are modifiable cognitive constructs developed to make sense of one’s illness. It is unclear how IPs influence patients’ QoL. A better understanding of this relationship can inform and direct high quality care aimed at improving patients’ QoL. We therefore investigated the mediating role of anxiety and depression in the association of IPs with QoL. Methods Data from 377 patients with advanced cancer were used from the PROFILES registry. Patients completed measures on IPs (BIPQ), QoL (EORTC QLQ-C30), and symptoms of anxiety and depression (HADS). Mediation analyses were conducted to decompose the total effect of IPs on QoL into a direct effect and indirect effect. Results All IPs but one (“Comprehensibility”) were negatively associated with QoL (p<0.001); patients with more negative IPs tended to have worse QoL. The effect was strongest for patients who felt that their illness affected their life more severely (“Consequences”), patients who were more concerned about their illness (“Concern”), and patients who thought that their illness strongly affected them emotionally (“Emotions”). Anxiety mediated 41–87% and depression mediated 39–69% of the total effect of patients’ IPs on QoL. Conclusion Negative IPs are associated with worse QoL. Anxiety and depression mediate this association. Targeting symptoms of anxiety and depression, through the modification of IPs, has the potential to improve QoL of patients with advanced cancer

Linear and profilometric changes of the mucosa following soft tissue augmentation in the zone of aesthetic priority:A systematic review and meta-analysis

OBJECTIVES: To assess the outcomes of soft tissue augmentation, in terms of change in level and thickness of mid-buccal mucosa, at implants sites in the zone of the aesthetic priority. MATERIAL AND METHODS: MEDLINE, EMBASE and Cochrane Central Register of Controlled Trials databases were searched (last search on 1 June 2020). Inclusion criteria were studies reporting outcomes of different materials and timing of grafting in patients undergoing soft tissue augmentation at implant sites in the aesthetic zone with a follow-up of ≥1 year after implant placement. Outcome measures assessed included changes in level and thickness of mid-buccal mucosa, implant survival, peri-implant health and patients' satisfaction. RESULTS: Eighteen out of 2,185 articles fulfilled the inclusion criteria. Meta-analysis revealed a significant difference in vertical mid-buccal soft tissue change (0.34 mm, 95% CI: 0.13-0.56, p = .002) and mid-buccal mucosa thickness (0.66 mm, 95% CI: 0.35-0.97, p < .001) following immediate implant placement in favour of the use of a graft versus no graft. Mean difference in mid-buccal mucosa level following delayed implant placement (0.17 mm, 95% CI: 0.01-0.34, p = .042) was also in favour of the use of a graft versus no graft. With regard to mucosa thickness, the use of a graft was not in favour compared with no graft following delayed implant placement (0.22 mm, 95% CI: -0.04-0.47, p = .095). Observed changes remained stable in the medium term. CONCLUSION: Soft tissue augmentation in the zone of the aesthetic priority results in less recession and a thicker mid-buccal mucosa following immediate implant placement and less recession in mid-buccal mucosa following delayed implant placement compared with no graft

Shared decision-making with people with intellectual disabilities in the last phase of life : a scoping review

Shared decision-making (SDM) is the process in which healthcare professionals and patients jointly discuss and decide which care and treatment policy is to be followed. The importance of SDM is increasingly being recognised across health settings, including palliative care. Little is known about SDM with people with intellectual disabilities (IDs) in the last phase of life. This review aimed to explore to which extent and in which way people with ID in the last phase of life are involved in decision-making about their care and treatment. In this scoping review, we systematically searched in the Embase, Medline and PsycINFO databases for empirical studies on decision-making with people with ID in the last phase of life. Of a total of 281 identified titles and abstracts, 10 studies fulfilled the inclusion criteria. All focused on medical end-of-life decisions, such as foregoing life-sustaining treatment, do-not-attempt-resuscitation orders or palliative sedation. All studies emphasise the relevance of involving people with ID themselves, or at least their relatives, in making decisions at the end of life. Still, only two papers described processes of decision-making in which persons with ID actively participated. Furthermore, in only one paper, best practices and guidelines for decision-making in palliative care for people with ID were defined. Although the importance of involving people with ID in the decision-making process is emphasised, best practices or guidelines about what this should look like are lacking. We recommend developing aids that specifically support SDM with people with ID in the last phase of life

Recognising the importance of 'family time-out' in consultations: An exploratory qualitative study

Objectives: Patients are often accompanied by family or companions during consultations, but little is known about how this might influence the process. We explored how the presence of a companion in a consultation contributes to communication and the decision-making process. Design: Observational study. Setting: A teaching hospital and a district general hospital in south-west England. Participants: 31 patients and their physicians were observed during consultations in which decisions to undergo palliative chemotherapy were made. Each patient was accompanied by at least one companion. Outcome measures: Communication patterns between physicians, patients and companions. Results: In addition to standard patient/physician interactions, patients and companions were often found to discuss medical information and exchange opinions between themselves without the physician actively participating. We called these instances 'family timeout'. On the occasion of disagreement between patients and companions about preferred treatment options, physicians and patients were able to agree the decision while acknowledging the differences in opinion. Conclusions: Instances of 'family time-out' may contribute to better consultation outcomes because they are understood and supported by the patient's social system. This study highlights the potentially important role of exchanges between patients and companions during consultations and how physicians may benefit from observation of such exchanges. We recommend testing the value of making space for family time-out during consultations. Also, we recommend further study into the medical ethics of family time-out. While the focus here is on palliative chemotherapy, this finding has implications for other consultations, particularly those involving difficult treatment decisions

Response shift due to diagnosis and primary treatment of localized prostate cancer: a then-test and a vignette study

Aim Whether a prostate cancer diagnosis induces response shift has not been established so far. Therefore, we assessed response shift in men who were diagnosed with localized prostate cancer. Patients and methods Out of 3,892 men who completed a questionnaire before screening, 82 were subsequently diagnosed with prostate cancer. Response shift was assessed in 52 (response 63%) by the then-test (EuroQol self-rating of health, Short-Form 36 mental health and vitality) and a novel method: rating of vignettes relating to side effects of prostate cancer treatment (urinary, bowel and erectile dysfunction). Three then-tests were conducted: two referencing pre-diagnosis (measured pre

The validation of the Dutch SF-Qualiveen, a questionnaire on urinary-specific quality of life, in spinal cord injury patients

Background: Optimizing the patients' quality of life is one of the main goals in the urological management of spinal cord injury (SCI) patients. In this study we validated the Dutch SF-Qualiveen, a short questionnaire that measures the urinary-specific quality of life, in SCI patients. No such measure is yet available for this patient group. Methods: In 2015-2016 SCI patients with urinary symptomatology who visited the outpatient clinics of Urology at the Erasmus Medical Centre and Rehabilitation at Rijndam Revalidation completed the SF-Qualiveen and UDI-6 during the visit and 1-2 weeks later. The UDI-6, a urinary tract symptom inventory, served as gold standard. Controls, recruited from the Otolaryngology outpatient clinic, completed the questionnaires once. Content-, construct-, and criterion validity and reliability (internal consistency and reproducibility) of the SF-Qualiveen were determined. Results: Fifty seven SCI patients and 50 controls were included. 12 SCI patients asserted that the SF-Qualiveen covered their bladder problems (good content validity). Patients' SF-Qualiveen scores being positively associated with severity of urinary symptoms and patients' scores being higher than those of controls indicated good construct validity. The positive association that was found between SF-Qualiveen and UDI-6 in patients (r = 0.66-0.67, P < 0.001) and controls (r = 0.63, P < 0.001) confirmed good criterion validity. Internal consistency (Cronbach's alpha 0.89-0.92) and reproducibility (intraclass correlation coefficient 0.94) of the SF-Qualiveen were good. Conclusions: The Dutch SF-Qualiveen is a valid and reliable tool to measure the urinary-specific quality of life in SCI patients

Shared decision making with frail people with intellectual disabilities in the palliative phase:A process evaluation of the use of the In-Dialogue conversation aid in practice

Background: This study reports the process evaluation of the In-Dialogue conversation aid to facilitate shared decision-making with people with intellectual disabilities in the palliative phase. Methods: Training for In-Dialogue was evaluated by 53 support staff members through questionnaires. The use of In-Dialogue in four residential care facilities for frail people with mild to severe intellectual disabilities was evaluated with semi-structured interviews with five relatives, nine support staff and three people with intellectual disabilities. Results: Most participants considered the training helpful to apply shared decision-making. Sixty-three people with intellectual disabilities participated in In-Dialogue conversations. Almost all interviewees stated that these conversations provided additional insight into people's concerns and preferences. Involvement of people with profound intellectual disabilities and their relatives appeared to be challenging.Conclusion: Conversations about illness and the end of life appeared to be feasible with the In-Dialogue conversation aid and provided insight into people's experiences and preferences.</p