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Background: An increasing number of older people are living with chronic kidney disease (CKD). Many have complex healthcare needs and are at risk of deteriorating health and functional status, which can adversely affect their quality of life. Comprehensive geriatric assessment (CGA) is an effective intervention to improve survival and independence of older people, but its clinical utility and cost-effectiveness in frail older people living with CKD is unknown. Methods: The GOAL Trial is a pragmatic, multi-centre, open-label, superiority, cluster randomised controlled trial developed by consumers, clinicians, and researchers. It has a two-arm design, CGA compared with standard care, with 1:1 allocation of a total of 16 clusters. Within each cluster, study participants ≥ 65 years of age (or ≥ 55 years if Aboriginal or Torres Strait Islander (First Nations Australians)) with CKD stage 3–5/5D who are frail, measured by a Frailty Index (FI) of > 0.25, are recruited. Participants in intervention clusters receive a CGA by a geriatrician to identify medical, social, and functional needs, optimise medication prescribing, and arrange multidisciplinary referral if required. Those in standard care clusters receive usual care. The primary outcome is attainment of self-identified goals assessed by standardised Goal Attainment Scaling (GAS) at 3 months. Secondary outcomes include GAS at 6 and 12 months, quality of life (EQ-5D-5L), frailty (Frailty Index – Short Form), transfer to residential aged care facilities, cost-effectiveness, and safety (cause-specific hospitalisations, mortality). A process evaluation will be conducted in parallel with the trial including whether the intervention was delivered as intended, any issue or local barriers to intervention delivery, and perceptions of the intervention by participants. The trial has 90% power to detect a clinically meaningful mean difference in GAS of 10 units. Discussion: This trial addresses patient-prioritised outcomes. It will be conducted, disseminated and implemented by clinicians and researchers in partnership with consumers. If CGA is found to have clinical and cost-effectiveness for frail older people with CKD, the intervention framework could be embedded into routine clinical practice. The implementation of the trial's findings will be supported by presentations at conferences and forums with clinicians and consumers at specifically convened workshops, to enable rapid adoption into practice and policy for both nephrology and geriatric disciplines. It has potential to materially advance patient-centred care and improve clinical and patient-reported outcomes (including quality of life) for frail older people living with CKD. Trial registration: ClinicalTrials.gov NCT04538157. Registered on 3 September 2020. [ABSTRACT FROM AUTHOR]

Patient-centred care (PCC) is recommended in policy documents for chronic heart failure (CHF) service provision, yet it lacks an agreed definition. A systematic review was conducted to identify PCC interventions in CHF and to describe the PCC domains and outcomes. Medline, Embase, CINAHL, PsycINFO, ASSIA, the Cochrane database, clinicaltrials.gov, key journals and citations were searched for original studies on patients with CHF staged II-IV using the New York Heart Association (NYHA) classification. Included interventions actively supported patients to play informed, active roles in decision-making about their goals of care. Search terms included 'patient-centred care', 'quality of life' and 'shared decision making'. Of 13,944 screened citations, 15 articles regarding 10 studies were included involving 2540 CHF patients. Three studies were randomised controlled trials, and seven were non-randomised studies. PCC interventions focused on collaborative goal setting between patients and healthcare professionals regarding immediate clinical choices and future care. Core domains included healthcare professional-patient collaboration, identification of patient preferences, patient-identified goals and patient motivation. While the strength of evidence is poor, PCC has been shown to reduce symptom burden, improve health-related quality of life, reduce readmission rates and enhance patient engagement for patients with CHF. There is a small but growing body of evidence, which demonstrates the benefits of a PCC approach to care for CHF patients. Research is needed to identify the key components of effective PCC interventions before being able to deliver on policy recommendations. [ABSTRACT FROM AUTHOR]

Introduction and hypothesis: The Self-Assessment Goal Achievement (SAGA) questionnaire is a patient-completed instrument designed to assess goal attainment in the behavioral or pharmacologic treatment of lower urinary tract symptoms (LUTS), including overactive bladder (OAB). The SAGA questionnaire allows patients to identify and rank the importance of treatment goals before treatment is initiated; the follow-up SAGA questionnaire quantifies the achievement of these patient-identified goals. The objective of this qualitative research was to confirm the content validity of the German, Spanish, Swedish, and English (UK) language versions of the SAGA questionnaire in patients with OAB with or without other LUTS. Methods: The SAGA questionnaire was translated to each language in accordance with a well-established forward and backward harmonization method. Patient interviews were then conducted according to a cognitive debriefing methodology. Qualitative analysis of patients' input allowed assessment of content validity of each linguistically adapted SAGA questionnaire. Results: All patients ( n = 29; six to eight per targeted country) found the SAGA questionnaire easy to understand and to complete. Most patients completed the nine prespecified (fixed) treatment goals and were able to add up to five personal goals in the open-ended portion and rate each goal by importance. Differences were identified in how the various languages communicated some of the concepts assessed with the SAGA questionnaire. Rewording of the translated versions of the questionnaire was necessary in some cases. Conclusions: This linguistic content validation study in four European languages indicates that SAGA is a comprehensive, easy-to-understand, and relevant questionnaire for patient-completed evaluation of LUTS/OAB symptoms and treatment goal attainment. [ABSTRACT FROM AUTHOR]

Aims: The first aim of this study was to measure the extent of care planning and support for health goals within a sample of Māori/non-Māori people with long-term conditions (LTCs). The second aim was to compare those with and without care plans, and those with and without support for health goals, with respect to health and experiences with general practice. Background: Collaborative care planning, resulting in a written care plan, and providing support for patient-identified goals are important aspects of LTC management. In the MidCentral District Health Board region, primary care practitioners have had help to achieve this through the introduction of comprehensive assessment and care-planning tools. Methods: 569 people with at least one LTC, who had recently enrolled in a local EnhancedCare+ programme or were receiving care from an LTC community clinical nurse, were recruited into the region's "Talking about Health" study, designed to explore LTC care from patient and provider perspectives. Consenting participants chose to complete a paper (by post) or electronic (email link) questionnaire, which included measures of health, healthy behaviours, experiences with doctors and nurses in general practice, patient activation, care planning/goal support and demographics. Results: People with written care plans were more active self-managers, reported better interactions with primary-care doctors and nurses, and perceived receiving more support from the general practice team than those without. Results were similar for people receiving support for their health goals, but differences in mental and physical health were also evident. More Māori than non-Māori reported having a written care plan, and support for health goals in the absence of a written care plan. A slightly broader range of benefits was evident for non-Māori than Māori, but the different sample sizes need to be taken into account when drawing conclusions. Conclusions: Written care plans and practitioner support for health goals appear to benefit people with LTCs. Support for health goals is important as, even without a written care plan, it was associated with better health and more positive ratings of practitioner interactions. Challenges for the region are to involve more people/whanau in collaborative care planning and to address system-wide barriers to embedding care-planning practices into routine care. [ABSTRACT FROM AUTHOR]

Background: An expanding base of evidence indicates that chronic gastrointestinal disorders not only impact physical wellbeing, but also affect many psychosocial aspects of life. However, less is known about gastrointestinal motility disorders. The present study aimed to explore how individuals experience gastrointestinal motility disorders and their impact on daily living. Methods: Eleven people with a gastrointestinal motility disorder participated in semi‐structured interviews face‐to‐face or via telephone. The interviews explored how participants came to be diagnosed, their experiences with health professionals, as well as the impact of dysmotility on enjoyment of food, socialising, eating out and quality of life (QoL). Interviews were tape‐recorded, transcribed and analysed using an inductive thematic analysis approach. Results: Analysis revealed an overarching theme of frustration that stemmed from three subthemes: (1) feeling misunderstood, judged and dismissed by health professionals leading to delayed diagnosis, misdiagnosis and multiple diagnoses; (2) severity and unpredictability of undesirable gastrointestinal symptoms; and (3) reduced QoL because of physical and social limitations, impairing their ability to have normal life experiences, including education, work and social activities. Conclusions: Dysmotility is a complex illness that impacts almost all aspects of a person's life. In addition to managing reported physical symptoms, the social and psychological burden associated with dysmotility needs to be addressed to improve outcomes and QoL. Key points: This research indicates that current healthcare systems are inadequate for supporting people suffering from severe dysmotility.Delayed diagnosis and misdiagnosis lead to feelings of mistrust in the healthcare system, poorly managed symptom control and reduced quality of life for this patient group.A comprehensive multidisciplinary model of care for the management of dysmotility is needed to ensure that people suffering dysmotility are provided with the best‐practice care. [ABSTRACT FROM AUTHOR]

Purpose: To determine whether treatment was acceptable to participants and perceived as beneficial by exploring the experiences of people with cognitive communication difficulties following acquired brain injury who participated in a novel, group, communication, project-based treatment. The purpose of the treatment was to improve participants' communication skills and quality of life, by focussing group activity towards the production of a project and by incorporating individualised communication goals into group sessions. Methods: Twenty-one people with acquired brain injury recruited from community settings participated in project-based treatment, which comprised one individual and nine group sessions (of 2–3 people) over six weeks. Structured interviews were conducted post-treatment as part of a broader assessment battery. Interviews were transcribed verbatim and analysed using content analysis to identify codes, categories, and themes. Results: Themes identified from the analysis centred around the treatment experience (general experience; group experience; project experience; working on goals) and benefit of treatment (communicative benefit; other benefits; emotional effects; meeting others; something to do). These themes were consistent with the treatment being perceived as acceptable and having initial efficacy for the participant group. Conclusion: The qualitative data presented here provide positive feasibility findings (acceptability and initial efficacy) of project-based treatment for people with acquired brain injury. The results highlight the value of incorporating participants' views in assessing feasibility in developing novel interventions. Inviting people (with cognitive communication difficulties following acquired brain injury) to feedback on their treatment experience provides valuable information that can confirm treatment choice and content or inform adjustments to future treatment. Group treatment with a meaningful and motivating focus, and individualised communication goals, seem to promote positive change in communication, emotional state, cognition, self-awareness, and social interaction. This study highlights the value of individuals' perspectives in evaluating feasibility of a novel intervention. [ABSTRACT FROM AUTHOR]

Background Shared decision-making at end of life (eol) requires discussions about goals of care and prioritization of length of life compared with quality of life. The purpose of the present study was to describe patient and oncologist discordance with respect to goals of care and to explore possible predictors of discordance. Methods: Patients with metastatic cancer and their oncologists completed an interview at study enrolment and every 3 months thereafter until the death of the patient or the end of the study period (15 months). All interviewees used a 100-point visual analog scale to represent their current goals of care, with quality of life (scored as 0) and survival (scored as 100) serving as anchors. Discordance was defined as an absolute difference between patient and oncologist goals of care of 40 points or more. Results: The study enrolled 378 patients and 11 oncologists. At baseline, 24% discordance was observed, and for patients who survived, discordance was 24% at their last interview. For patients who died, discordance was 28% at the last interview before death, with discordance having been 70% at enrolment. Dissatisfaction with eol care was reported by 23% of the caregivers for patients with discordance at baseline and by 8% of the caregivers for patients who had no discordance (p = 0.049; φ = 0.20). Conclusions: The data indicate the presence of significant ongoing oncologist-patient discordance with respect to goals of care. Early use of a simple visual analog scale to assess goals of care can inform the oncologist about the patient's goals and lead to delivery of care that is aligned with patient goals. [ABSTRACT FROM AUTHOR]

Background: Idiopathic pulmonary fibrosis has an uncertain and rapid trajectory after diagnosis. Palliative care is rarely utilized, although both patients and caregivers experience a distressingly high symptom burden. Most patients die in hospital. Aim: The purpose of this study was to explore bereaved caregivers' experiences and perceptions of an early integrated palliative approach implemented at a Multidisciplinary Interstitial Lung Disease Clinic. Design: A narrative approach was used, with thematic and content analysis of open-ended interviews. Setting/participants: The clinic is located in a large western Canadian city. Caregivers of deceased patients were recruited through purposive sampling. The eight participants were either spouses or adult children. Results: Five major themes were identified: Having a Terminal Disease; Planning Goals and Wishes for Care; Living Life and Creating Memories; Feeling Strain and Responsibility; and Nearing the End. Caregivers had little understanding of prognosis prior to advance care planning conversations at the clinic. Advance care planning conversations enabled caregivers to know and support patients' goals and wishes. Caregivers described feeling informed, prepared, and supported when death was near. They expressed neither distress nor anxiety related to patients' symptoms or strain of relationships. Conclusion: Collaboration and close communication among caregivers, respirologists, and home care enabled effective symptom management and out of hospital deaths. Patients and caregivers had opportunities to enjoy events, create memories, determine preferences, and make plans. Further research on an early integrated palliative approach in Idiopathic Pulmonary Fibrosis is warranted related to quality of life, experience with death and dying, and caregiver bereavement. [ABSTRACT FROM AUTHOR]

BACKGROUND: Cognitive Adaptation Training (CAT) uses compensatory strategies and environmental supports to support cognitive impairments and improve functioning. CAT may be useful for addressing vocational recovery in first-episode psychosis (FEP) because cognitive impairments are common and vocational recovery is a key goal of young people with FEP. OBJECTIVE: To describe clinical observations and practice experience when delivering CAT with FEP clients and explore potential benefits via objective outcome measures for improving vocational outcomes. METHODS: In this pilot study, five FEP participants received 9 months of CAT. Participant goals and functional needs and clinical observations were recorded. Formal measures of functioning, quality of life and motivation were independently administered pre- and post-intervention. RESULTS: Vocational recovery (education, employment) was found to be a primary functional goal of FEP participants. Accordingly, CAT had a strong focus on vocational functioning, including functional domains required for successful work or educational outcomes, such as organization and planning, transportation and activities of daily living. Factors of clinical importance when delivering CAT with the FEP participants included cognitive heterogeneity, family involvement, flexibility in compensatory and environmental supports used, and experience of stigma. Improvements from baseline to post-intervention were observed on most measures, with the largest improvements seen in global functioning (including vocation), planning and organization, and quality of life. CONCLUSIONS: CAT is an intervention that appears well suited to addressing vocational functioning in FEP, but larger controlled trials are needed. [ABSTRACT FROM AUTHOR]

Purpose: Most health outcome measures for chronic diseases do not incorporate specific health goals of patients and caregivers. To elicit patient-centered goals for dementia care, we conducted a qualitative study using focus groups of people with early-stage dementia and dementia caregivers.Methods: We conducted 5 focus groups with 43 participants (7 with early-stage dementia and 36 caregivers); 15 participants were Spanish-speaking. Verbatim transcriptions were independently analyzed line-by-line by two coders using both deductive and inductive approaches. Coded texts were grouped into domains and developed into a goal inventory for dementia care.Results: Participants identified 41 goals for dementia care within five domains (medical care, physical quality of life, social and emotional quality of life, access to services and supports, and caregiver support). Caregiver goals included ensuring the safety of the person with dementia and managing caregiving stress. Participants with early-stage dementia identified engaging in meaningful activity (e.g., work, family functions) and not being a burden on family near the end of life as important goals. Participants articulated the need to readdress goals as the disease progressed and reported challenges in goal-setting when goals differed between the person with dementia and the caregiver (e.g., patient safety vs. living independently at home). While goals were similar among English- and Spanish-speaking participants, Spanish-speaking participants emphasized the need to improve community education about dementia.Conclusions: Patient- and caregiver-identified goals for care are different than commonly measured health outcomes for dementia. Future work should incorporate patient-centered goals into clinical settings and assess their usefulness for dementia care. [ABSTRACT FROM AUTHOR]

Background: Multimorbidity is common in deprived communities and reduces quality of life. Our aim was to evaluate a whole-system primary care-based complex intervention, called CARE Plus, to improve quality of life in multimorbid patients living in areas of very high deprivation.Methods: We used a phase 2 exploratory cluster randomised controlled trial with eight general practices in Glasgow in very deprived areas that involved multimorbid patients aged 30-65 years. The intervention comprised structured longer consultations, relationship continuity, practitioner support, and self-management support. Control practices continued treatment as usual. Primary outcomes were quality of life (EQ-5D-5L utility scores) and well-being (W-BQ12; 3 domains). Cost-effectiveness from a health service perspective, engagement, and retention were assessed. Recruitment and baseline measurements occurred prior to randomisation. Blinding post-randomisation was not possible but outcome measurement and analysis were masked. Analyses were by intention to treat.Results: Of 76 eligible practices contacted, 12 accepted, and eight were selected, randomised and participated for the duration of the trial. Of 225 eligible patients, 152 (68 %) participated and 67/76 (88 %) in each arm completed the 12-month assessment. Two patients died in the control group. CARE Plus significantly improved one domain of well-being (negative well-being), with an effect size of 0.33 (95 % confidence interval [CI] 0.11-0.55) at 12 months (p = 0.0036). Positive well-being, energy, and general well-being (the combined score of the three components) were not significantly influenced by the intervention at 12 months. EQ-5D-5L area under the curve over the 12 months was higher in the CARE Plus group (p = 0.002). The incremental cost in the CARE Plus group was £929 (95 % CI: £86-£1788) per participant with a gain in quality-adjusted life years of 0.076 (95 % CI: 0.028-0.124) over the 12 months of the trial, resulting in a cost-effectiveness ratio of £12,224 per quality-adjusted life year gained. Modelling suggested that cost-effectiveness would continue.Conclusions: It is feasible to conduct a high-quality cluster randomised control trial of a complex intervention with multimorbid patients in primary care in areas of very high deprivation. Enhancing primary care through a whole-system approach may be a cost-effective way to protect quality of life for multimorbid patients in deprived areas.Trial Registration: Trial Registration: ISRCTN 34092919 , assigned 14/1/2013. [ABSTRACT FROM AUTHOR]

The article focuses on the use of prognostication and communication skills to facilitate transitions to hospice in patients with advanced cancer. It discusses the importance of palliative care and hospice to increase the quality of life of cancer patients. It explores the various medical tools for prognostication and presents a method for discussing prognosis by using the setting, perception, information, knowledge, emphatic communications, and summarize and strategize (SPIKES) framework.

To survey continence specialists (CSs) about their assessment practice including their use of quality of life (QoL) information, perceived barriers, benefits and training needs. Cross-sectional national postal survey of 624 practicing CSs in the UK. The questionnaire included open and closed questions relating to assessment practice. Completed questionnaires were returned by 299 (49%) CSs. Although 80% routinely assessed QoL, fewer than 54% demonstrated awareness of published questionnaires. The majority used structured questions (41%) many of which were non-standardised single items (26%) or locally developed questionnaires (19%). Only 22% used standardised patient-completed questionnaires such as the King’s Health Questionnaire and the Incontinence Quality of Life questionnaire. Perceived assessment barriers included the availability of appropriate questionnaires, patient disability, limited guidance, resources and time. Of those routinely assessing QoL, 77% wanted more support; the most useful media cited being the internet, followed by professional guidance and training courses. Although QoL measurement is highly valued, there was wide variation in assessment practice with few adopting standardised approaches. Most CSs require greater guidance and support that takes account of their diverse needs. Familiar assessment barriers exist which the use of web-based information, in association with professional guidance might help overcome. Clear mechanisms are required to direct standardised and appropriate assessment practice. [ABSTRACT FROM AUTHOR]