Longer-term Unmet Needs Research Articles

Psychometric validation of the Chinese version of the longer-term Unmet Needs after Stroke monitoring tool for stroke patients

Purpose This study aimed to translate, adapt, and test the psychometric properties of the Longer-term Unmet Needs after Stroke (LUNS) monitoring tool for Chinese stroke patients. Materials and Methods The LUNS monitoring tool was translated and cross-culturally adapted using the Functional Assessment of Chronic Illness Therapy translation methodology and two rounds of expert consultation. A cross-sectional study was conducted to test the validity and reliability of the Chinese version of the tool from April to October 2023 in Xi’an. Results The Chinese version of the LUNS monitoring tool had a Cronbach’s alpha value of 0.702 and the ICC was 0.732 (p < 0.001). The I-CVIs were above 0.90 and the S-CVI/Ave was 0.983. The factor analysis extracted eight factors, collectively accounting for 66.283% of the data variance. The correlation coefficient between the LUNS and WSO needs assessment questionnaire was 0.105 (p = 0.019). Conclusions The study confirmed good reliability and validity of the Chinese version of the LUNS monitoring tool in measuring the prevalence and level of unmet need in stroke patients. It will help identify the unmet needs of stroke patients, and to guide rehabilitation service response during individual patient consultations, facilitate service development, and inform commissioning decisions.

Protocol for a feasibility registry-based randomised controlled trial investigating a tailored follow-up service for stroke (A-LISTS)

BackgroundStroke affects long-term physical and cognitive function; many survivors report unmet health needs, such as pain or depression. A hospital-led follow-up service designed to address ongoing health problems may avoid unplanned readmissions and improve quality of life.MethodsThis paper outlines the protocol for a registry-based, randomised controlled trial with allocation concealment of participants and outcome assessors. Based on an intention-to-treat analysis, we will evaluate the feasibility, acceptability, potential effectiveness and cost implications of a new tailored, codesigned, hospital-led follow-up service for people within 6–12 months of stroke. Participants (n = 100) from the Australian Stroke Clinical Registry who report extreme health problems on the EuroQol EQ-5D-3L survey between 90 and 180 days after stroke will be randomly assigned (1:1) to intervention (follow-up service) or control (usual care) groups. All participants will be independently assessed at baseline and 12–14-week post-randomisation. Primary outcomes for feasibility are the proportion of participants completing the trial and for intervention participants the proportion that received follow-up services. Acceptability is satisfaction of clinicians and participants involved in the intervention. Secondary outcomes include effectiveness: change in extreme health problems (EQ-5D-3L), unmet needs (Longer-term Unmet Needs questionnaire), unplanned presentations and hospital readmission, functional independence (modified Rankin Scale) and cost implications estimated from self-reported health service utilisation and productivity (e.g. workforce participation). To inform future research or implementation, the design contains a process evaluation including clinical protocol fidelity and an economic evaluation.DiscussionThe results of this study will provide improved knowledge of service design and implementation barriers and facilitators and associated costs and resource implications to inform a future fully powered effectiveness trial of the intervention.Trial registrationACTRN12622001015730pr.Trial sponsorFlorey Institute of Neuroscience and Mental Health, 245 Burgundy Street, Heidelberg, VIC, 3084, PH: +61 3 9035 7032

Unmet supportive care needs among survivors of stroke in Australia: A cross-sectional study.

To examine, among survivors of stroke: (a) the prevalence of and most frequently reported unmet needs; and (b) the sociodemographic and clinical factors associated with higher counts of unmet needs. A cross-sectional study was undertaken with survivors of stroke recently discharged from eight hospitals in Australia, with institutional board approval. Survivors were mailed one survey for completion after their discharge from hospital. Unmet needs were measured by the Longer-Term Unmet Needs After Stroke (LUNS) tool. The number and percentage of participants who reported unmet needs were calculated. The association of sociodemographic factors, type of stroke, and thrombolysis treatment to total LUNS scores was examined using mixed ordinal logistic regression. A total of 402 survivors (35% of those approached) between April 2018 to December 2019 returned a completed survey. 83% reported at least one unmet need. The most frequently reported unmet need was needing more information about their stroke (n = 239, 61%). Those who identified as Aboriginal and/or Torres Strait Islander had approximately 5.6-fold higher odds (OR = 5.59, p = .025) of having more longer-term unmet needs compared to those who did not identify as Aboriginal and/or Torres Strait Islander. Unmet needs are common in recently discharged survivors of stroke. These findings may be used to inform strategies that support recovery. Providing more information may help reduce unmet needs among survivors of stroke. Enhanced hospital discharge planning and enhanced community services for survivors may help better prepare them and their caregivers for the return home. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Korean Version of the Longer-Term Unmet Needs After Stroke Questionnaire.

: To translate the 22-item Longer-term Unmet Needs after Stroke (LUNS) questionnaire, validate it in the Korean stroke population, and assess the reliability of face-to-face and telephone surveys. : Sixty-six adult patients with stroke from Seoul National University Bundang Hospital and Kangwon National University Hospital were involved in the validation. Participants were interviewed twice using the LUNS Korean version: first, a face-to-face survey for validation, and second, a telephone survey for test-retest reliability. Participants completed the Frenchay Activities Index (FAI) and Short Form 12 (SF-12) Mental and Physical Component Summary (MCS and PCS) scores at the first interview. For concurrent validity, the differences in health status (FAI, SF-12 MCS and PCS) between the groups that reported unmet needs and those that did not were analyzed for each item. Cohen's kappa and percentage of agreement between the first and second administrations were calculated for each item to determine the test-retest reliability. : The average age of the participants was 61.2±12.8 years and 74.2% were male. Fifty-seven patients were involved in the second interview. Depending on the unmet needs, SF-12 MCS, PCS, and FAI were significantly different in 12 of 22 items. In the test-retest reliability test, 12 items had a kappa of 0.6 or higher, and two had a kappa of <0.4. : The LUNS instrument into Korean (LUNS-K) is a reliable and valid instrument for assessing unmet health needs in patients with stroke. In addition, telephone surveys can be considered reliable.

Adaptation and validation of the Longer-term Unmet Needs after Stroke (LUNS) monitoring tool in Sri Lanka

BackgroundGlobally, stroke is a leading cause of mortality and morbidity. Unmet needs are defined as expressed needs that are not fulfilled by services provided and are considered an important indicator of the adequacy and quality of stroke follow-up care. This study aimed to culturally adapt, modify, translate and validate, the Longer-term Unmet Needs after Stroke (LUNS) monitoring tool, to Sri Lanka. Currently, there is no validated tool in Sri Lanka to assess unmet needs among stroke survivors and unmet needs are not systematically assessed.MethodsA phased approach followed to culturally adapt, translate, establish its factorial validity and evaluate the convergent and divergent validity, reliability, and overall acceptability. The process of culturally adapting the tool was carried out using two rounds of the modified Delphi technique. The modified tool was translated to Sinhala and pretested among 10 stroke survivors. A descriptive cross-sectional study was conducted among 119 stroke survivors to establish the factorial validity and convergent and discriminant validity using the GHQ-12 and Barthel Index. The Socio-demographic characteristics of the study participants are presented. Communalities were assessed for 21 items and 2 items were dropped. Factor structure was confirmed with varimax and oblique rotations. The correlation coefficient was calculated to assess convergent and divergent validity. Cronbach’s alpha value was calculated to assess internal reliability.ResultsFollowing the modified Delphi technique, 5 items of LUNS tool were removed, and 5 items were modified. Three new items were added based on expert recommendation. One item related to driving also removed as it does not fit with the factor structure emerged. In establishing factorial validity 5 factors emerged from the exploratory factor analysis. In assessing the convergent and discriminant validity, test results revealed that both General Health Questionnaire-12 (GHQ-12) and Barthel Index significantly correlated as expected with unmet needs. The results of Cronbach’s alpha showed that all the factors were moderately high confirming the reliability of the tool.ConclusionsThe Sinhala version of the LUNS monitoring tool is a valid and reliable instrument to assess the unmet needs of stroke survivors. Assessment of unmet needs will add new insight into evaluation of the quantity, quality, and effectiveness of healthcare interventions received by stroke survivors in Sri Lanka.

Case management after acquired brain injury compared to care as usual: study protocol for a 2-year pragmatic randomized controlled superiority trial with two parallel groups

BackgroundPeople with acquired brain injury may suffer from cognitive, emotional and behavioural changes in the long term. Continuity of care is often lacking, leading to a variety of unmet needs and hindering psychosocial functioning from the occurrence of brain injury up to years thereafter. Case management aims to prevent (escalation of) problems and to facilitate timely access to appropriate services. In other populations, case management has shown to improve psychosocial well-being. In this study, we aim to evaluate the feasibility of case management after acquired brain injury and its effectiveness and cost-effectiveness, compared to care as usual.MethodsThis is a pragmatic randomized controlled superiority trial with two parallel groups and repeated measures in adults with ABI and their family, taking place between November 2019 and December 2021 in three provinces in the Netherlands. Participants will be randomly allocated to either the case management group, receiving case management from hospital discharge up to 2 years thereafter, or the control group, receiving care as usual. Effectiveness will be evaluated every 6 months for 18–24 months by patient-reported psychosocial well-being (Hospital Anxiety and Depression Scale (HADS), Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-P) restriction subscale and the Life Satisfaction Questionnaire (LiSat)), self-management (Patient Activation Measure (PAM)) and care needs (Longer-term Unmet Needs after Stroke (LUNS)). Family outcomes include self-efficacy (Carer Self-Efficacy Scale (CSES)), caregiver burden (Caregiver Strain Index (CSI)), psychosocial well-being (LiSat, HADS), family needs (Family Needs Questionnaire (FNQ)). Feasibility will be evaluated using qualitative methods, assessing fidelity, dose delivered, dose received, reach, recruitment and context. Cost-effectiveness will be determined by the EQ-5D-3L and service use.DiscussionAt the moment, there is no integrated health care service for people with acquired brain injury and their family members in the long term. If case management is shown to be feasible and (cost)-effective, it could bridge the gap between patients’ and families’ needs and the available services.Trial registrationNetherlands Trial Register NL8104. Registered on 22 October 2019.

The course of depressive symptoms in the first 12 months post-stroke and its association with unmet needs

Aim To describe the course of depressive symptoms during the first 12 months post-stroke and its association with unmet needs. Methods A prospective cohort study among stroke patients admitted to inpatient rehabilitation. Depressive symptoms were assessed 3, 6, and 12 months post-stroke using the Hospital Anxiety and Depression Scale, and categorized into three trajectories: no (all times <8), non-consistent (one or two times ≥8), or persistent (all times ≥8) depressive symptoms. Unmet needs were assessed using the Longer-Term Unmet Needs questionnaire. Multivariable logistic regression analyses were used to investigate the association between depressive symptoms and unmet needs. Results One hundred and fifty-one patients were included, of whom 95 (62.9%), 38 (25.2%), and 18 (11.9%) had no, non-consistent, or persistent depressive symptoms, respectively. Depressive symptoms three months post-stroke persisted in 43.9% and recurred in 19.5% of patients during the first 12 months post-stroke. Depressive symptoms were significantly associated with the occurrence and number of unmet needs (odds ratio 6.49; p = 0.003 and odds ratio 1.28; p = 0.005, respectively). Conclusions Depressive symptoms three months post-stroke were likely to persist or recur during the first 12 months post-stroke. Depressive symptoms are associated with unmet needs. These results suggest that routine monitoring of depressive symptoms and unmet needs should be considered post-stroke. Implications for rehabilitation Patients with depressive symptoms three months post-stroke have a high risk of developing persistent or recurrent depressive symptoms during the first 12 months post-stroke. Unmet needs are associated with both non-consistent and persistent depressive symptoms post-stroke. These results suggest that health professionals should routinely screen for depressive symptoms and health care needs around three months post-stroke. In patients with depressive symptoms at three months post-stroke early treatment of depressive symptoms and addressing unmet needs should be considered and depressive symptoms should be routinely monitored during the first 12 months post-stroke.

Health Care Use and Its Associated Factors 5-8 Years after Stroke

Objectives: To describe health care use and its associated factors in the chronic phase after stroke. Methods: Patients completed a questionnaire on health care use, 5-8 years after hospital admission for stroke. It comprised the number of visits to physicians or other health care professionals over the past 6 months (Physician-visits; Low ≤1 or High ≥2) and other health care professionals (Low = 0 or High ≥ 1). In addition the Longer-term Unmet Needs after Stroke (LUNS), Frenchay Activity Index (FAI) and Physical and Mental Component Summary Scales of the Short Form 12 (PCS and MCS) were administered. Their associations with health care use (high, low) were determined by means of logistic regression analysis, adjusted for sex and age. Results: Seventy-eight of 145 patients (54%) returned the questionnaires; mean time-since-stroke was 80.3 months (SD10.2), age-at-stroke 61.7 years (SD13.8), and 46 (59%) were male. Physician contacts concerned mainly the general practitioner (58; 79.5%). Forty-one (52.6%) and 37 (47.4%) of the patients had a high use of physician and other health professionals visits, respectively. Worse PCS scores were associated with both high use of physician and other health professionals visits (OR .931; 95%CI .877-.987 and OR .941; 95%CI .891-.993, respectively), whereas the FAI, MCS, or LUNS were not related to health care use. Conclusions: Health care use after stroke is substantial and is related to physical aspects of health status, not to mental aspects, activities or unmet needs, suggesting a mismatch between patients’ needs and care delivered.

The Longer-term Unmet Needs after Stroke Questionnaire: Cross-Cultural Adaptation, Reliability, and Concurrent Validity in a Dutch Population

Unmet needs are common after stroke. We aimed to translate the 22-item Longer-term Unmet Needs after Stroke (LUNS) Questionnaire and validate it in a Dutch stroke population. The LUNS was translated and cross-culturally adapted according to international guidelines. After field testing, the Dutch version was administered twice to a hospital-based cohort 5-8 years after stroke. Participants were also asked to complete the Frenchay Activity Index (FAI) and Short Form (SF)-12. To explore acceptability, the response and completion rates as well as number of missing items were computed. For concurrent validity, the differences in health status (FAI, SF-12) between groups who did and did not report an unmet need were calculated per item. To determine the 14-day test-retest reliability, the percentage of agreement between the first and the second administration was calculated for each item. Seventy-eight of 145 patients (53.8%) returned the initial Dutch LUNS (average age 68.3 [standard deviation 14.0] years, 59.0% male); 66 of these patients (84.6%) fully completed it. Of all items, 3.3% were missing. Among completers, the median number of unmet needs was 3.5 (2.0-5.0; 1.0-14.0). For 15 of 22 items, there was a significant association with the FAI or SF-12 Mental or Physical Component Summary scales. The percentage of agreement ranged from 69.8% to 98.1% per item. Among the 53.8% who completed the survey, the LUNS was concluded to be feasible, reliable, and valid; two-thirds of its items were related to activities and quality of life. Its usefulness and acceptability when administered in routine practice require further study.

Development and evaluation of tools and an intervention to improve patient- and carer-centred outcomes in Longer-Term Stroke care and exploration of adjustment post stroke: the LoTS care research programme

BackgroundEvidence-based care pathways are required to support stroke patients and their carers in the longer term.AimsThe twofold aim of this programme of four interlinking projects was to enhance the care of stroke survivors and their carers in the first year after stroke and gain insights into the process of adjustment.Methods and resultsWe updated and further refined a purposely developed system of care (project 1) predicated on a patient-centred structured assessment designed to address areas of importance to patients and carers. The structured assessment is linked to evidence-based treatment algorithms, which we updated using a structured protocol: reviewing available guidelines, Cochrane reviews and randomised trials. A pragmatic cluster randomised controlled trial evaluation of the clinical effectiveness and cost-effectiveness of this system of care was undertaken in 29 community-based UK stroke care co-ordinator services (project 2). In total, 15 services provided the system of care and 14 continued with usual practice. The primary objective was to determine whether the intervention improved patient psychological outcomes (General Health Questionnaire-12) at 6 months; secondary objectives included functional outcomes for patients, outcomes for carers and cost-effectiveness, as measured through self-completed postal questionnaires at 6 and 12 months. A total of 800 patients and 208 carers were recruited; numbers of participants and their baseline characteristics were well balanced between intervention and control services. There was no evidence of statistically significant differences in primary or secondary end points or adverse events between the two groups, nor evidence of cost-effectiveness. Intervention compliance was high, indicating that this is an appropriate approach to implement evidence into clinical practice. A 22-item Longer-term Unmet Needs after Stroke (LUNS) questionnaire was developed and robustly tested (project 3). A pack including the LUNS questionnaire and outcome assessments of mood and social activity was posted to participants 3 or 6 months after stroke to assess acceptability and validity. The LUNS questionnaire was re-sent 1 week after return of the first pack to assess test–retest reliability. In total, 850 patients were recruited and the acceptability, validity and test–retest reliability of the LUNS questionnaire as a screening tool for post-stroke unmet need were confirmed. This tool is now available for clinical use. An in-depth qualitative investigation was undertaken with 22 patients (and carers) at least 1 year after stroke (project 4) to gain further insights into the experience of adjustment. This included initial semistructured interviews, limited observations and solicited diaries with a follow-up interview 3–4 months after the initial interview and highlighted a range of different trajectories for post-stroke recovery.ConclusionsThe programme has been completed as planned, including one of the largest ever stroke rehabilitation trials. This work highlights that successfully addressing the needs of a heterogeneous post-stroke population remains problematic. Future work could explore stratifying patients and targeting services towards patients (and carers) with specific needs, leading to a more specialised bespoke service. The newly developed LUNS questionnaire and the qualitative work will help inform such services.Trial registrationCurrent Controlled Trials ISRCTN67932305.FundingThe National Institute for Health Research (NIHR) Programme Grants for Applied Research programme. The Bradford Teaching Hospitals NHS Foundation Trust received additional funding for project 2 in the submitted work from the Stroke Association, reference number TSA 2006/15. The initial development work for the LUNS tool and the Longer-Term Stroke care (LoTS care) trial carried out before the start of the programme grant was funded by the Stroke Association, reference number TSADRC 2006/01.

Validation of the Longer-term Unmet Needs after Stroke (LUNS) monitoring tool: a multicentre study

Objective: To evaluate the acceptability, test–retest reliability and validity of the Longer-term Unmet Needs after Stroke monitoring tool. Design: A questionnaire pack was posted to stroke survivors living at home three or six months after stroke. A second pack was sent two weeks after receipt of the completed first pack. Setting: Stroke survivors living at home across England. Subjects: Stroke survivors were recruited from 40 hospitals across England, in two phases. The first with an optimal cohort of patients, the second to capture a broader post-stroke population, including those with communication and/or cognitive difficulties. Patients were excluded if they required palliative care or if permanent discharge to a nursing or residential home was planned. Main measures: The questionnaire pack included the Longer-term Unmet Needs after Stroke tool, General Health Questionnaire-12, Frenchay Activities Index, and Short Form-12. Results: Interim analysis of phase 1 data (n = 350) indicated that the tool was sufficiently robust to progress to phase 2 (n = 500). Results are reported on the combined study population. Of 850 patients recruited, 199 (23%) had communication and/or cognitive difficulties. The median age was 73 years (range 28–98). Questionnaire pack return rate was 69%. For the new tool, there was 3.5% missing data and test–retest reliability was moderate to good (percentage item agreement 78–99%, kappa statistic 0.45–0.67). Identification of an unmet need was consistently associated with poorer outcomes on concurrent measures. Conclusions: The Longer-term Unmet Needs after Stroke tool is acceptable, reliable, can be self-completed, and used to identify longer-term unmet needs after stroke.