Preferences For Future Treatment Research Articles

Experiences of and treatment preferences for insomnia in autistic adults: An Interpretative Phenomenological Analysis

Insomnia and insomnia symptoms are frequent experiences of autistic people resulting in pronounced daytime effects and poor quality of life. This study employed an Interpretive Phenomenological Analysis approach to explore lived experiences of autistic adults with insomnia, perspectives on current available interventions and future treatment preferences. Twelve participants (aged 21–48 years old) were interviewed following screening for insomnia, using the Sleep Condition Indicator (scores ranged from 1 to 12; cut off >16). Each interview was analysed individually developing Personal Experiential Themes for each case, which were then mapped across cases based on identified patterns and connections. Results yielded rich personal accounts and identified two Group Experiential Themes: “The Night is Friendlier” and “It Doesn't Really Work for Me”. Participants described experiences with sleeplessness throughout their adult lives and often since childhood. They discussed how the night time offers them a more relaxed and safe space to freely behave as they wish. Advice and interventions were viewed by participants via the prism of underlying social issues, such as autism acceptance and trust, and how these structures can affect participants' experiences with insomnia, help seeking and effectiveness of current interventions. Our results highlight the need for inclusion of autistic people in insomnia research through co-production and co-creation as well as clinical practice and delivery. This is the first study to integrate perspectives and experiences of autistic people towards insomnia and sleep-related advice by health care professionals. Findings are discussed in relation to theoretical and practical implications, as well as directions for future research.

Compassionate Communication and Advance Care Planning to improve End-of-life Care in Treatment of Haematological Disease ‘ACT’: Study Protocol for a Cluster-randomized trial

IntroductionTo support the implementation of advance care planning and serious illness conversations in haematology, a previously developed conversation intervention titled ‘Advance Consultations Concerning your Life and Treatment’ (ACT) was found...

The trajectory of prognostic cognition in patients with advanced cancer: is the traditional advance care planning approach desirable for patients?

Most patients with advanced cancer initially express a desire to be informed of their prognosis, and prognostic discussions between patients and their oncologists can trigger the subsequent trajectory of prognostic cognitions. On the continuum of prognostic cognition, including inaccurate/accurate prognostic awareness (awareness of incurability of cancer, terminal nature of illness or life expectancy) and prognostic acceptance (accepting one's prognosis), patients' perceptions of being informed of their prognosis by oncologists and patients' coping strategy for serious medical conditions regulate prognostic cognitions. However, nearly half of the patients with advanced cancer have poor prognostic awareness, and few patients achieve prognostic acceptance. These phenomena partly act as barriers to participation in advance care planning. When oncologists engage in advance care planning conversations, they must assess the patient's prognostic cognition and readiness for advance care planning. Considering the inaccurate prognostic awareness in a non-negligible proportion of patients and that astatic patients' preferences for future treatment and care are influenced by prognostic cognition, more research on decision-making support processes for high-quality and goal-concordant end-of-life care is needed along with research of advance care planning. In addition to making decisions regarding future medical treatment and care, oncologists must engage in continuous and dynamic goal-of-care conversations with empathic communication skills and compassion from diagnosis to end-of-life care.

Perspectives of people with young-onset dementia on future quality of life: a qualitative interview study with implications for advance care planning

Introduction:Advance care planning (ACP), one of the key domains of palliative care, enables individuals to define and discuss goals and preferences for future treatment and care with family and healthcare professionals. By exploring the views of people with dementia on quality of life now and in the future, including the end of life, care provisions can be tailored to their values. The perspectives of people with young-onset dementia (YOD), with a symptom onset before the age of 65, may differ from those of older people with dementia given the different life phase and family context. Qualitative research methods can be used to elicit the attitudes and beliefs to generate insight into their perspectives.Methods:Qualitive study, as part of the Care4Youngdem-study, using semi-structured interviews with a criterion-based purposive sample of community-dwelling people with YOD (n=10) and their (family) caregivers in the Netherlands. We adapted the interview guide based on discussion of the transcripts. Double coding of three interviews resulted in a codebook. The codes were subsequently analysed through thematic analysis.Results:Interviews took place between December 2019 and February 2022. The most prevalent dementia subtype was Alzheimer’s (n=7). Four overarching themes, based on 21 categories, were derived from the interviews: (1) connectedness with others, (2) sense of dignity, (3) acceptance versus no acceptance of the impact of dementia, (4) concerning oneself with the future versus not wishing to concern oneself with the future. Connectedness with others and a sense of dignity were deemed prerequisites for (future) quality of life but were affected by YOD. These themes overlapped in terms of axial codes. Ambiguities were seen in the attitude towards the impact of YOD and the preparation for the future. The degree of acceptance of YOD affected the orientation towards the future.Discussion:Family and professional caregivers should discuss with people with YOD how to maintain connectedness with others and a sense of dignity. Opposite ways of coping with the present and future were found. Professional caregivers should take personal coping styles into account when starting ACP conversations.

19 General practitioners’ perspectives on advance care planning: a qualitative study

Abstract Background An Advance Care Plan (ACP) outlines patient preferences for future treatment for a time when capacity is lacking. With our ageing population and rising dementia prevalence, ACPs are of increasing relevance and importance; however, very few are created each year. This study aims to explore General Practitioner (GP) perspectives on ideal timing, facilitators, and barriers to ACPs. Methods To date, ten GPs with a range of clinical experience have been purposely sampled from the Irish College of General Practitioners database. Semi-structured interviews were conducted by phone, video call, or in person, concurrently recorded, and subsequently transcribed. The Braun and Clarke method of thematic analysis was utilised, and coding was performed using NVivo software. Results All GPs spoke to the importance of ACPs for care of those with dementia and believed GPs are ideally placed to have these discussions. Two themes arose regarding timing of discussion: (1) routine proactive discussion prior to potential cognitive issues arising and (2) discussion within a few appointments of diagnosis. Identified barriers to ACP include: (1) lack of patient awareness of ACPs, (2) lack of GP education on ACPs, (3) difficulty predicting disease progression, (4) poor family dynamics, (5) short appointment times, and (6) lack of remuneration. Identified facilitators include: (1) patient’s acceptance of death and understanding of diagnosis, (2) use of an established template to guide discussion, (3) presence of a trusted family member, (4) long appointment times and (5) remuneration. Conclusion There was universal agreement on the importance of ACPs. Inclusion of ACP teaching in the curriculum for undergraduate medical education and postgraduate GP training should be strongly considered. There is need for heightened public awareness of the Assisted Decision-Making Act and ACPs. Further qualitative and quantitative research is needed to explore this issue nationally and identify how it has been resolved internationally.

TREATMENT PREFERENCES IN CROHN’S DISEASE PERIANAL FISTULA: PERSPECTIVES OF HEALTHCARE PROFESSIONALS

Abstract INTRODUCTION Crohn’s perianal fistulas (CPFs) are a common complication of Crohn’s disease and treated with both medical and surgical interventions. This study aimed to characterize the experience and satisfaction of healthcare professionals (HCPs) with current CPF treatments and assess HCP preferences for future CPF treatment attributes. METHODS A US observational study recruited gastroenterologists (GEs) and surgeons who managed at least three patients with CPF in the past 12 months and spent ≥ 70% of their professional time treating patients. Using a web-enabled questionnaire, HCP satisfaction with CPF treatments and attitudes towards CPF care were rated using a 1–9 scale (1 = not at all satisfied/strongly disagree, 9 = extremely satisfied/strongly agree). A discrete choice experiment (DCE) evaluated HCP preferences for future treatment attributes. Data were analyzed using descriptive statistics and hierarchical Bayesian modeling for DCE. RESULTS In total, 137 HCPs were recruited (GEs, n = 77; surgeons, n = 60) with a mean (standard deviation [SD]) of 15.6 (7.8) years in active clinical practice. The mean (SD) number of patients with CPF per HCP was 29.4 (16.7), and 41% of patients had moderate disease severity. Overall, HCPs reported moderate satisfaction with current CPF treatment (medication or surgical) attributes (Table). HCP satisfaction scores for each CPF medication and surgical procedure were low to moderate (mean range [SD]: 3.4 [2.1]–6.7 [1.5]; 4.2 [2.2]–5.7 [1.6], respectively) with biologics rated highest for medications (4.7 [2.2]–6.7 [1.5]), and short- or long-term seton placement highest for surgical procedures (mean [SD]: 5.7 [1.6] and 5.5 [1.7], respectively). HCP attitudes towards current CPF interventions (mean score [SD]) revealed a need for better treatments (7.4 [1.5]), a concern for CPF recurrence despite treatment (7.2 [1.4]), that current treatments may not reduce risk of fecal incontinence (FI) (6.8 [1.4]), and that setons are a good short- but not long-term solution for CPF (6.5 [1.8]). Achieving fistula closure was the most important treatment goal for HCPs (57%), with improvement in quality of life (mean score [SD]: 7.7 [1.3]), low chance of symptom recurrence (7.5 [1.4]), minimal risk of FI (7.5 [1.4]) and sustained efficacy post treatment (7.5 [1.5]) the main attributes influencing treatment decisions. The DCE identified symptom control and/or fistula closure and low FI rates as the most important future CPF treatment attributes (Figure). CONCLUSIONS HCPs were unsatisfied with current CPF treatments, highlighting a need for better treatments. From an HCP’s perspective, future CPF therapies should control symptoms, promote fistula closure, and low rates of FI.

Healthcare use and healthcare costs for patients with advanced cancer; the international ACTION cluster-randomised trial on advance care planning

Background: Advance care planning supports patients to reflect on and discuss preferences for future treatment and care. Studies of the impact of advance care planning on healthcare use and healthcare costs are scarce. Aim: To determine the impact on healthcare use and costs of an advance care planning intervention across six European countries. Design: Cluster-randomised trial, registered as ISRCTN63110516, of advance care planning conversations supported by certified facilitators. Setting/participants: Patients with advanced lung or colorectal cancer from 23 hospitals in Belgium, Denmark, Italy, the Netherlands, Slovenia and the UK. Data on healthcare use were collected from hospital medical files during 12 months after inclusion. Results: Patients with a good performance status were underrepresented in the intervention group (p< 0.001). Intervention and control patients spent on average 9 versus 8 days in hospital (p = 0.07) and the average number of X-rays was 1.9 in both groups. Fewer intervention than control patients received systemic cancer treatment; 79% versus 89%, respectively (p< 0.001). Total average costs of hospital care during 12 months follow-up were €32,700 for intervention versus €40,700 for control patients (p = 0.04 with bootstrap analyses). Multivariable multilevel models showed that lower average costs of care in the intervention group related to differences between study groups in country, religion and WHO-status. No effect of the intervention on differences in costs between study groups was observed (p = 0.3). Conclusions: Lower care costs as observed in the intervention group were mainly related to patients’ characteristics. A definite impact of the intervention itself could not be established.

The Web-Based Advance Care Planning Program "Explore Your Preferences for Treatment and Care": Development, Pilot Study, and Before-and-After Evaluation.

Web-based advance care planning (ACP) programs may support patients in thinking about and discussing their preferences for future treatment and care. However, they are not widely available, and only a limited number of programs are evidence based. We aimed to develop and evaluate an evidence-based, interactive web-based ACP program that guides users through the process of thinking about, discussing, and recording of preferences for treatment and care. The program "Explore your preferences for treatment and care" was developed, pilot-tested on feasibility, and subsequently evaluated; engagement in ACP was assessed before program completion and 2 months after program completion using the ACP Engagement Survey (score 1-5) among 147 persons with chronic disease. Usability (score 0-100) and user satisfaction (score 1-5) were also assessed. ACP engagement increased from 2.8 before program completion to 3.0 two months after program completion (P<.001); contemplation about ACP increased from 2.6 to 2.8 (P=.003), and readiness for ACP increased from 2.2 to 2.5 (P<.001). No changes were found for knowledge about ACP (3.0-3.2; P=.07) and self-efficacy for ACP (3.8-3.8; P=.25). The program was perceived as usable (mean 70, SD 13), attractive (mean 3.8, SD 0.7), and comprehensible (mean 4.2, SD 0.6). We developed an evidence-based, interactive web-based ACP program in cocreation with patients, relatives, and health care professionals. Before-and-after evaluation showed that the program can support people in taking first steps in ACP and in reflecting on preferences for treatment and care, by guiding them through the process of ACP using a stepwise approach. Participants perceived the program as usable and understandable, and they were satisfied with the program and with the amount of information. Health care professionals may use the program as a tool to start ACP discussions with their patients. The program may increase awareness of ACP.

Patient and Clinician Experiences When Using a CO2 Laser for Cavity Preparations: Lessons learned from Prospective Clinical Research

This prospective clinical study evaluated the experiences and preferences of both patients and clinicians when performing class I–V cavity preparation procedures using a 9300 nm CO2 laser without anesthetic. A total of 233 procedures were performed on 103 patients. Following treatment, patients were asked to describe discomfort/pain levels and preferences for future treatment with either laser treatment or traditional therapy. Additionally, clinicians were asked to rate their experiences with the procedures in three technical domains: speed, ease-of-use, and precision. In total, 98% of patients preferred laser treatment to traditional therapy and 93% of all procedures performed were completed with no anesthesia. Younger patients and patients receiving multiple restorations reported significantly higher discomfort, though discomfort scores were very low overall (below 3 on a 10-point pain scale). While there were significant differences in clinician experiences, each clinician reported having generally high satisfaction using the laser with respect to speed, ease of use, and precision. In conclusion, the 9300 nm CO2 laser provides clinicians a viable option for cavity preparations in dentistry as evidenced by high rates of anesthesia-free procedures with low reported discomfort, the fact that nearly all patients would opt for laser use on future cavity preparations, and generally positive experiences reported by clinicians.

Information needs of patients with chronic diseases and their relatives for web-based advance care planning: a qualitative interview study

BackgroundAdvance care planning (ACP) enables persons to identify preferences for future treatment and care, and to discuss, record and review these preferences. However, the uptake of ACP among patients with chronic diseases is relatively low. Web-based ACP programs can support patients and their relatives in ACP. However, information needs of patients and their relatives for ACP are unknown. The aim of this study is to explore information needs of patients with chronic disease and their relatives for web-based ACP.MethodsWe conducted semi-structured interviews with patients with chronic diseases and relatives at their home or at the study center. In three cases, the patient and relative were paired since they preferred to be interviewed together. We asked about information they would search for when to start with ACP, where they would search for information, what search terms they would use on the Internet, and what content and information they would consider important on an ACP website. The interviewer asked participants to clarify their responses during the interview. We used thematic analysis to analyze the interviewees’ responses.ResultsWe interviewed nine patients with different chronic diseases including amyotrophic lateral sclerosis (ALS), multiple sclerosis (MS), chronic obstructive pulmonary disease (COPD) and kidney diseases, and seven relatives, namely partners or (adult) children. The interviewees were aged 24 to 80 years, nine were female and seven were male. Both patients with a chronic disease and relatives mentioned comparable information needs. Many interviewees indicated they would use the Internet to search for information about ACP. Mentioned search terms were “advance care planning”, “treatment plan”, “disease trajectory” and names of patient associations. Information needs concerned their disease trajectory and quality of life, medical treatment decisions, practical support in arranging care, the concept of ACP and guidance in ACP, communication of treatment and care preferences, peer support of others with chronic diseases, and information for relatives. Many appreciated encouragement of their healthcare providers to take a pro-active role in ACP.ConclusionsWe conclude that information needs for ACP included guidance in ACP, support in making decisions about medical treatment, and practical support in arranging care. We recommend adapting web-based ACP information to the information needs of patients and their relatives to increase its findability, uptake and usefulness.

Gaining insight into the views of outpatients with Huntington\u2019s disease regarding their future and the way they deal with their poor prognosis: a qualitative study

BackgroundHuntington’s disease (HD) has a poor prognosis. Decision-making capacity and communication ability may become lost as the disease progresses. Therefore, HD patients are encouraged to engage in advance care planning (ACP). To improve ACP for HD patients, there is a need to better understand how these patients face their poor prognosis.AimTo gain insight into the views of HD patients who receive outpatient care regarding their future and the way they deal with the poor prognosis of their disease.MethodsA qualitative study using semi-structured interviews with 12 patients with HD (7 outpatient clinic, 3 day care, 2 assisted living facility). Audio-recorded interviews were transcribed verbatim. Through reading and re-reading interviews, writing memos and discussions in the research team, strategies were identified.ResultsThree strategies emerged for facing a future with HD. Participants saw the future: 1) as a period that you have to prepare for; 2) as a period that you would rather not think about; 3) as a period that you do not have to worry about yet. Participants could adopt more than one strategy at a time. Even though participants realized that they would deteriorate and would need more care in the future, they tried to keep this knowledge ‘at a distance’, with the motivation of keeping daily life as manageable as possible.ConclusionsOfficial ACP guidelines recommend discussing goals and preferences for future treatment and care, but patients tend to want to live in the present. Further research is needed to elucidate the best approach to deal with this discrepancy.

Patient-reported depression treatment and future treatment preferences: an observational study in general practice.

Depression is prevalent in general practice, but few studies have explored patient-reported depression care. To investigate patient-reported treatment received for depression and future treatment preferences among adult patients visiting their GP, and to evaluate the associations with sex, age and educational level. A cross-sectional survey was conducted in general practices in Norway from 2016 to 2017. Altogether, 2335 consecutive patients (response rate, 89.2%) in the GPs' waiting rooms answered a questionnaire about their received depression treatment and treatment preferences in case of future depression. The study population (N = 2239) had a mean age of 48.6 ± 17.7 years (range 18-91), 60.1% were women. Of the 770 patients reporting to have received depression treatment, 39.1% were treated exclusively by their GP while 52.5% also were referred to a psychologist/psychiatrist. Older age was positively associated with medication and negatively associated with referrals to psychologist/psychiatrist. People with high education had lower odds for receiving medication (odds ratios [OR], 0.49; 95% confidence intervals [CI]: 0.30-0.80) compared to those with low education. If future depression, 81.6% of the respondents would discuss this with their GP, 60.9% would prefer talking therapy with their GP, 22.5% medication, and 52.9% referral to psychologist or psychiatrist. One-third of the patients attending their GPs had consulted with them at some time concerning depression the case of future depression, most patients preferred talking therapy with the GP. This finding warrants increased research focus on the GP's role in depression care.

&lt;p&gt;Significance of advance care planning in nursing homes: views from patients with cognitive impairment, their next of kin, health personnel, and managers&lt;/p&gt;

Purpose: Advance care planning (ACP) performed by regular staff, which also includes patients with cognitive impairment and their next of kin, is scarcely studied. Thus, we planned an implementation study including key stakeholders (patients, next of kin, and health care personnel) using a whole-ward/system approach to ACP. We explored how they experienced ACP and its significance.Patients and methods: This qualitative study is part of a mixed-method implementation study of ACP. In four nursing homes, we did qualitative interviews and audio-recordings of meetings. We completed 20 individual semistructured interviews with participants soon after ACP conversations. The interviews included patients with cognitive impairment, their next of kin, and health care personnel. We also conducted four focus group interviews with staff and managers in the nursing homes and audio-recorded four network meetings with the project teams implementing ACP.Results: All participants appreciated taking part in ACP. Patients and next of kin focused more on the past and present than future treatment preferences. Still, ACP seemed to contribute to a stronger patient focus on end-of-life conversations. More generally, ACP seemed to contribute to valuable information for future decision-making, trusting relations, improved end-of-life communication, and saving time and resources.Conclusion: Safeguarding a strong patient focus on ACP and fostering a person-centered care culture in nursing home wards seem to be achievable through implementation of ACP that includes regular staff, patients with cognitive impairment, and their next of kin.

Advance Care Planning and its Relevance for Emergency and Intensive Care Medicine

Like in other countries, advance care planning (ACP) is currently being implemented in Germany as a new concept to realise valid and effective advance directives. This concept comprises processes to explore and document individual preferences for future treatment, and to honour them at a time when the person is incapacitated. ACP aims to ensure that patients will be treated according to their preferences when they are no longer capable due to acute health crises or chronic diseases. This paper gives an overview of the concept of ACP with a focus on relevant issues for emergency and intensive care medicine.

Psychiatric advance directives, a possible way to overcome coercion and promote empowerment.

Psychiatric advance directives (ADs) allow an individual to state their preferences for future treatment at times when they may be unable to make considered decisions. There are differences in their form and legal value and the process associated with their use and completion. Several studies have now been completed to assess the impact of ADs on service use and coercion. Their results give a mixed picture but directives nevertheless have the potential to support the empowerment process, minimize experienced coercion, and improve coping strategies. These may in turn reduce the frequency of in-patient service use. Further studies on the different processes of facilitation involved and on different populations are necessary to improve our knowledge and use of these potentially powerful interventions.

ADVANCE CARE DIRECTIVES (ACDS): CONSISTENCY AND UNDERSTANDING OF PATIENTS' FUTURE MEDICAL TREATMENT PREFERENCES

BackgroundACDs enable individuals to document future treatment preferences. Documented wishes need to be ‘clinically meaningful’ and able to inform medical treatment plans during acute hospitalisation.AimTo assess preferences indicated on ACDs...

Medication Preferences and Adherence Among Individuals With Severe Mental Illness and Psychiatric Advance Directives

Psychiatric advance directives allow patients with severe mental illness to document their preferences for particular medications. This study investigated the role of psychiatric advance directives in treatment choice and medication adherence. A total of 123 persons with severe mental illness recorded medication preferences in psychiatric advance directives. The authors compared medication preferences to prescribed medications over 12 months, determined concordance between preferred and prescribed medications, and examined the effect of concordance on medication adherence at 12 months. Participants requested a median of two medications in their psychiatric advance directives (range from zero to six) and refused a median of one medication (range from zero to ten). Between baseline and follow-up there was a 27% increase in the number of medications prescribed that had been requested on the psychiatric advance directive (Wilcoxon matched pairs, p<.001). After correction for the number of medications listed in the psychiatric advance directive, a 10% increase in concordance remained significant (p<.001). Being prescribed at least one medication requested in the psychiatric advance directive predicted higher medication adherence at 12 months, after the analysis controlled for relevant covariates (odds ratio=7.8, 95% confidence interval=1.8-34.0). Providing information about medication preferences in psychiatric advance directives may increase prescribing of patient-preferred medications even in noncrisis settings. Patients who were prescribed medications that they requested in advance were significantly more likely to adhere to medications, supporting the benefit of patient participation in medication choice. Psychiatric advance directives appear to be a clinically useful conduit for communicating patient medication preferences.

Medication Preferences and Adherence Among Individuals With Severe Mental Illness and Psychiatric Advance Directives

Medication Preferences and Adherence Among Individuals With Severe Mental Illness and Psychiatric Advance Directives

Preferences for Psychiatric Advance Directives Among Latinos: Views on Advance Care Planning for Mental Health

Psychiatric advance directives allow persons with mental illness to declare preferences for future treatment through an advance instruction and/or a health care agent. Initial outcomes are promising (1-5). However, the role of psychiatric advance directives in the cross-cultural context of mental health services has not been examined. These documents may play an important role for Latino individuals in US mental health care settings. Psychiatric advance directives may represent an opportunity to align culturally appropriate services with treatment needs in Latino populations. However, no research has examined the acceptability of these documents by Latino mental health stakeholders. This study assessed demand, interest, and attitudes towards psychiatric advance directives for clients, families and clinicians.

Adults with Congenital Heart Disease: Psychological Needs and Treatment Preferences

Approximately one-third of adult congenital heart disease (ACHD) patients have mood or anxiety disorders, the majority of which go untreated. The extent to which this group of patients is interested in psychological services is, however, unknown. This study investigated the perceived psychological needs of patients and their mental health treatment preferences. Participants completed an anonymous survey with items regarding mental health treatment history, preferences for future treatment, Internet use, and interest in peer support. A total of 155 ACHD patients completed study questionnaires (mean age = 39 years; 50% female). Forty percent of patients reported previous mental health treatment. Some 51% of patients (73/142) indicated significant interest in at least 1 of 7 defined areas of psychological treatment (managing mood and/or anxiety, coping with a cardiac condition, stress management, anger management, relationship difficulties, substance use, and smoking cessation). Patients were most interested in stress management and coping with heart disease; one-third of patients (48/141 and 47/141, respectively) expressed high interest in these 2 topics. There was a consistent preference for psychological treatment to be provided over the Internet vs. in person or over the telephone; 94% of the patients had Internet access. In total, 35% of patients (51/145) were interested in receiving peer support. It is not only health providers who recognize the importance of psychological care for ACHD patients. As a group, patients are also interested in psychological treatment and peer support. Programs are encouraged to provide psychological services and maximize opportunities for interactions with other patients.