"I Wish I Had That!": A Qualitative Analysis of Psychosocial Treatment Preferences Among Young Adults With Recent Concussion and Anxiety.

OBJECTIVE: To assess psychosocial treatment preferences and factors that may affect treatment participation among young adults with a recent concussion and co-occurring anxiety. DESIGN: In-depth, semi-structured individual qualitative interviews, followed by thematic analysis using a hybrid deductive-inductive approach. SETTING: Academic medical center in the US Northeast. PARTICIPANTS: Seventeen young adults (18-24y) who sustained a concussion within the past 3-10 weeks and reported at least mild anxiety (≥5 on the Generalized Anxiety Disorder-7 questionnaire). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Primary outcomes include preferences for program content (eg, topics and skills), delivery modality, format, and barriers and facilitators to participation. RESULTS: We identified 4 domains characterizing participants' perceptions of and preferences for treatment. (1) Program content: Participants preferred a program early after injury that included psychoeducation and coping skills (eg, activity pacing, deep breathing, mindfulness). (2) Therapeutic processes: Participants preferred a person-centered approach in which clinicians normalized anxiety postconcussion and reassured them of recovery. (3) Program logistics: Participants endorsed that a brief, virtual program would be acceptable. They preferred access to program components through multiple modalities (eg, audio, video) and accommodations to manage concussion symptoms. (4) Barriers and facilitators to participation: Barriers included acute concussion symptoms (eg, screen sensitivity), time constraints, and forgetting sessions. Facilitators included a program that is flexible (format, scheduling), personalized (self-chosen mode for reminders, measure of accountability), and accessible (ie, advertising through health care professionals or social media). CONCLUSIONS: Participants need psychosocial support that normalizes their experiences and provides education and coping tools. Treatments should be accessible, flexible, and person centered. Psychosocial treatments meeting these preferences may help optimize the recovery of young adults with recent concussion and anxiety.

Concordance of End-of-Life Care With End-of-Life Wishes in an Integrated Health Care System.

Importance: There is widespread consensus on the challenges to meeting the end-of-life wishes of decedents in the US. However, there is broad but not always recognized success in meeting wishes among decedents 65 years and older. Objective: To assess how well end-of-life wishes of decedents 65 years and older are met in the last year of life. Design, Setting, and Participants: This quality improvement study involved 3 planned samples of family members or informants identified as the primary contact in the medical record of Kaiser Permanente Southern California decedents. The first sample was 715 decedents, 65 years or older, who died between April 1 and May 31, 2017. The second was a high-cost sample of 332 decedents, 65 years or older, who died between June 1, 2016, and May 31, 2017, and whose costs in the last year of life were in the top 10% of the costs of all decedents. The third was a lower-cost sample with 655 decedents whose costs were not in the top 10%. The survey was fielded between December 19, 2017, and February 8, 2018. Main Outcomes and Measures: Meeting end-of-life wishes, discussions with next of kin and physicians, types of discordant care, and perceptions of amount of care received. Results: Surveys were completed by 715 of the 2281 next of kin in the all-decedent sample (mean [SD] decedent age, 80.9 [8.9] years; 361 [50.5%] male) for a 31% response rate; in 332 of the 1339 next of kin in the high-cost sample (mean [SD] decedent age, 75.5 [7.1] years; 194 [48.4%] male) for a 25% response rate; and in 659 of 2058 in the lower-cost sample (mean [SD] decedent age, 81.6 [8.8] years) for a 32% response rate. Respondents noted that high percentages of decedents received treatment that was concordant with their desires: 601 (88.9%) had their wishes met, 39 (5.9%) received a treatment they did not want, and 554 (84.1%) filled out an advance directive. A total of 509 respondents (82.5%) believed the amount of care was the right amount. Those with the highest costs had their wishes met at lower rates than those with lower costs (250 [80.1%] vs 553 [89.6%]). Conclusions and Relevance: In this Kaiser Permanente Southern California cohort, a large proportion of decedents 65 years and older had end-of-life discussions and documentation, had their wishes met, and received the amount of care they thought appropriate.

Factors Influencing Preference for Intervention in a Comparative Effectiveness Trial of Mindfulness-Based Cancer Recovery and Tai Chi/Qigong in Cancer Survivors.

Introduction: An important gap between randomized efficacy research and real-world implementation of complementary therapies is the role of patient preferences in influencing engagement and outcome. Several studies have highlighted the benefits of patient preference on health outcomes, but few have investigated the factors associated with preference for interventions, which may be critical to assure the success of program implementation. The current study sought to explore the factors associated with patient preference in an ongoing randomized preference-based trial of Mindfulness-Based Cancer Recovery (MBCR) versus Tai Chi/qigong (TCQ) (the Mindfulness and Tai Chi/qigong in Cancer Health [MATCH] study). Materials and Methods: A multi-method study design was used. A subsample of participants were purposely selected from the ongoing MATCH study to have representation from both intervention arms and from both men and women across different age groups. Open-ended, semi-structured qualitative interviews were conducted to explore the factors influencing initial patient preference. Interviews were transcribed verbatim and analyzed by using inductive thematic analysis. The treatment acceptability and preference measure was administered to determine patients' ratings of acceptability and credibility of both preferred and nonpreferred interventions. Results: A total of 13 participants were interviewed prior to program attendance, with 8 (62%) preferring TCQ and 5 (38%) choosing MBCR. Major themes related to patients' preference for intervention included: (1) expectations about the preferred intervention; (2) knowledge of the intervention; (3) past experiences with the intervention; and (4) self-efficacy. Participants' mean treatment acceptability scores were higher for their preferred program than their nonpreferred program. Conclusion: Understanding the factors that influence cancer survivors' preference for mind-body interventions can augment health care providers' knowledge of the barriers and facilitators for successful implementation of interventions in clinical settings, as well as help patients make informed treatment decisions and improve satisfaction and outcomes. Clinical trial registration no.: NCT03641222.

The key components of a successful model of midwifery-led continuity of carer, without continuity at birth: findings from a qualitative implementation evaluation.

BACKGROUND: Recent UK maternity policy changes recommend that a named midwife supports women throughout their pregnancy, birth and postnatal care. Whilst many studies report high levels of satisfaction amongst women receiving, and midwives providing, this level of continuity of carer, there are concerns some midwives may experience burnout and stress. In this study, we present a qualitative evaluation of the implementation of a midwife-led continuity of carer model that excluded continuity of carer at the birth. METHODS: Underpinned by the Conceptual Model for Implementation Fidelity, our evaluation explored the implementation, fidelity, reach and satisfaction of the continuity of carer model. Semi-structured interviews were undertaken with midwives (n = 7) and women (n = 15) from continuity of carer team. To enable comparisons between care approaches, midwives (n = 7) and women (n = 10) from standard approach teams were also interviewed. Interviews were recorded, transcribed and analysed using thematic analysis. RESULTS: For continuity of carer team midwives, manageable caseloads, extended appointment times, increased team stability, and flexible working patterns facilitated both care provided and midwives' job satisfaction. Both continuity of carer and standard approach midwives reported challenges in providing postnatal continuity given the unpredictable timing of labour and birth. Time constraints, inadequate staffing and lack of administrative support were reported as additional barriers to implementing continuity of carer within standard approach teams. Women reported continuity was integral to building trust with midwives, encouraged them to disclose mental health issues and increased their confidence in making birth choices. CONCLUSIONS: Our evaluation highlighted the successful implementation of a continuity of carer model for ante and postnatal care. Despite exclusion of the birth element in the model, both women and midwives expressed high levels of satisfaction in comparison to women and midwives within the standard approach. Implementation successes were largely due to structural and resource factors, particularly the combination of additional time and smaller caseloads of women. However, these resources are not widely available within the resources of maternity unit budgets. Future research should further explore whether a continuity of carer model focusing on antenatal and postnatal care delivery is a feasible and sustainable model of care for all women.

Navigating the path: a qualitative exploration of New Zealand general practitioners' views on integration of care with acupuncturists.

BACKGROUND: Increasingly, many patients believe that a combined approach of complementary and alternative medicine (CAM), including acupuncture, and conventional medicine is better than either on its own, and more patients now have the desire to discuss CAM with well-informed general practitioners (GPs). However, to our knowledge, the interaction and collaboration between GPs and acupuncturists specifically in relation to shared care have not been investigated. This research explored interprofessional communication between GPs and acupuncturists in New Zealand. This article specifically reports the GPs' viewpoints. METHODS: This study was part of a larger mixed-methods research project. Semi-structured interviews of 14 purposively sampled GP participants were conducted and analysed using thematic analysis. RESULTS: The data analysis identified both facilitators of and barriers to integrative health care. Facilitators included the willingness of GPs to engage in communication and a recognition of the importance of patient choice. Barriers included the limited opportunities for sharing information and the lack of current established pathways for communication or direct referrals. GPs also highlighted the confusion around scopes of practice in terms of the different styles of and approaches to acupuncture. CONCLUSION: This research contributes to the body of knowledge concerning interprofessional communication and collaboration between GPs and acupuncturists and suggests that while there are significant barriers to collaboration, there is also the potential to impact provider satisfaction and patient well-being. It provides context within a New Zealand health care setting and also provides additional insights regarding acupuncture, specifically through the disaggregation of specific CAM modalities.

Understanding Preferences for Addressing Spirituality Among Adults Seeking Outpatient Mental Health Care.

Focusing on 472 religiously heterogenous adult patients seeking psychotherapy at a university-based outpatient clinic, this brief report examined (1) these patients' preferences about clinicians appreciating their religion and/or spirituality (R/S) backgrounds (spiritually affirming) and addressing spiritual concerns in treatment (spiritually integrated) and (2) role of demographic factors and psychological functioning in predicting preferences for R/S integration. Analyses revealed that more than half of patients reported moderate or greater importance for spiritually affirming care and one-third hoped to address spiritual issues. Furthermore, these factors emerged as indicators of stronger preferences for R/S integration: female sex, racial minority status (African American, Native American), history of marriage (past and present), affiliation to organized religion (Christianity, Islam), and importance placed on R/S. In general, findings suggest that most patients seeking psychotherapy in a university-based clinic in southern Alabama might desire a spiritually affirming approach, and a smaller subset prefer an approach in which R/S is integrated into treatment.

Trading patients' choice in providers for quality of maternity care? A discrete choice experiment amongst pregnant women.

BACKGROUND: The introduction of bundled payment for maternity care, aimed at improving the quality of maternity care, may affect pregnant women's choice in providers of maternity care. This paper describes a Dutch study which examined pregnant women's preferences when choosing a maternity care provider. The study focused on factors that enhance the quality of maternity care versus (restricted) provider choice. METHODS: A discrete choice experiment was conducted amongst 611 pregnant women living in the Netherlands using an online questionnaire. The data were analysed with Latent Class Analyses. The outcome measure consisted of stated preferences in the discrete choice experiment. Included factors were: information exchange by care providers through electronic medical records, information provided by midwife, information provided by friends, freedom to choose maternity care provider and travel distance. RESULTS: Four different preference structures were found. In two of those structures, respondents found aspects of the maternity care related to quality of care more important than being able to choose a provider (provider choice). In the two other preference structures, respondents found provider choice more important than aspects related to quality of maternity care. CONCLUSIONS: In a country with presumed high-quality maternity care like the Netherlands, about half of pregnant women prefer being able to choose their maternity care provider over organisational factors that might imply better quality of care. A comparable amount of women find quality-related aspects most important when choosing a maternity care provider and are willing to accept limitations in their choice of provider. These insights are relevant for policy makers in order to be able to design a bundled payment model which justify the preferences of all pregnant women.

A qualitative inquiry into patients' perspectives on individualized priorities for treatment outcomes in inflammatory bowel diseases.

PURPOSE: Patients with inflammatory bowel diseases (IBD) experience a variety of symptoms and limitations due to their condition. While many outcome measures are available to assess IBD symptom level and disease activity, individual patients' preferences are usually not accounted for. Individualized outcome measures allow individual patients to select and weigh outcomes based on their relative importance, and have been developed in other medical disciplines. In this study, we explored IBD patients' perspectives on different strategies to prioritize IBD-specific health outcomes. METHODS: Existing individualized measures were modified for relevance to IBD patients. We performed six focus groups, in which patients were asked to rate and weigh these measures in a series of exercises and to discuss the pros and cons of five different prioritization methods (Likert scale, ranking, selecting outcomes, distribute points, and using a rotating disk) using a semi-structured approach. A thematic analysis revealed key themes in the data. RESULTS: Patients' thoughts could be grouped into four key themes with 2-4 subthemes each: (1) prioritizing outcomes; (2) differences between methods; (3) outcomes to include; and (4) practical use. Overall, it was challenging for many patients to prioritize outcomes. Among the different prioritization methods, the rotating disk was perceived as the most intuitive. Patients anticipated that this visualization would also help them communicate with their physician. CONCLUSION: In a series of focus groups, a visual rotating disk was found to be an intuitive and holistic way to elicit the relative importance of different outcomes for individual IBD patients.

Exploring unmet healthcare needs, healthcare access, and the use of practitioner based complementary and alternative medicine in adults with chronic pain.

Background: Chronic pain is a complex condition frequently encountered in nursing practice, resulting in negative multidimensional effects on the individual and healthcare system. Increasingly, people with chronic pain are turning to Complementary and Alternative Medicine (CAM) to manage their pain. Objectives: To explore the relationship between healthcare access, unmet healthcare needs, and practitioner-based Complementary and Alternative Medicine use in adults with chronic pain. Design: A secondary analysis of 1688 individuals ≥18 years old self-reporting chronic pain from Cycle 9 of the Canadian National Population Health Survey. Methods: Multivariate logistic regression and descriptive statistics. Results: When controlling for demographics and health status indicators, the presence of unmet healthcare needs was found to predict CAM use (p < 0.001; OR 2.02; CI [1.45, 2.81]), along with sex, education, income, employment, and restriction of activities. Conclusion: People may be using CAM due to shortcomings of the conventional healthcare system, with implications for policymakers and healthcare professions to develop more integrative strategies to improve chronic pain management. Impact statement: Having unmet healthcare needs is associated with two-fold increased odds of using Complementary and Alternative Medicine in Canadian adults with chronic pain.

Factors influencing adoption of facility-assisted delivery - a qualitative study of women and other stakeholders in a Maasai community in Ngorongoro District, Tanzania.

BACKGROUND: Tanzania's One Plan II health sector program aims to increase facility deliveries from 50 to 80% from 2015 to 2020. Success is uneven among certain Maasai pastoralist women in Northern Tanzania who robustly prefer home births to facility births even after completing 4+ ANC visits. Ebiotishu Oondomonok Ongera (EbOO) is a program in Nainokanoka ward to promote facility births through a care-group model using trained traditional birth attendants (TBAs) as facilitators. Results to date are promising but show a consistent gap between women completing ANC and those going to a facility for delivery. A qualitative study was conducted to understand psychosocial preferences, agency for decision-making, and access barriers that influence where a woman in the ward will deliver. METHODS: In-depth interviews, focus group discussions and key-informant interviews were conducted with 24 pregnant and/or parous women, 24 TBAs, 3 nurse midwives at 3 health facilities, and 24 married men, living in Nainokanoka ward. Interviews and discussions were transcribed, translated, and analyzed thematically using a grounded theory approach. RESULTS: Most women interviewed expressed preference for a home birth with a TBA and even those who expressed agency and preference for a facility birth usually had their last delivery at home attributed to unexpected labor. TBAs are engaged by husbands and play a significant influential role in deciding place of delivery. TBAs report support for facility deliveries but in practice use them as a last resort, and a significant trust gap was documented based on a bad experience at a facility where women in labor were turned away. CONCLUSIONS: EbOO project data and study results show a slow but steady change in norms around delivery preference in Nainokanoka ward. Gaps between expressed intention and practice, especially around 'unexpected labor' present opportunities to accelerate this process by promoting birth plans and perhaps constructing a maternity waiting house in the ward. Rebuilding trust between facility midwives, TBAs, and the community on the availability of health facility services, and increased sensitivity to women's cultural preferences, could also close the gap between the number of women who are currently using facilities for ANC and those returning for delivery.

Drivers of Preference for Evidence-Based PTSD Treatment: A Qualitative Assessment.

INTRODUCTION: Mental health treatment utilization among persons with posttraumatic stress disorder (PTSD) tends to be low but may be improved by aligning treatment with patient preferences. Our objective was to characterize the reasons that drive a person's selection of a specific evidence-based PTSD treatment. MATERIALS AND METHODS: Data were collected using an online survey of adults who screened positive for PTSD. Participants viewed descriptions of five evidence-based PTSD treatments (cognitive processing therapy, prolonged exposure, eye movement desensitization and reprocessing, stress inoculation training, antidepressant medication) and identified their most preferred treatment. Participants then explained why they selected their top choice. These free-text responses (n = 249) were analyzed using thematic coding and constant comparative methods. RESULTS: Identified themes included (1) perceived effectiveness, (2) perceived suitability, (3) requirements of participation, (4) familiarity with the modality, (5) perception of the option as 'better than alternatives,' (6) perception of the option as 'not harmful,' (7) accessibility, and (8) delivery format. Differences in themes were also examined by treatment modality. CONCLUSIONS: By highlighting which pieces of information may be most important to detail when presenting different treatment options, these results can help guide treatment planning conversations, as well as the development of shared decision-making tools.

Preferred and actual mode of delivery in relation to fear of childbirth.

PURPOSE: This prospective cohort study aimed to investigate the interrelation between preferred/actual mode of delivery and pre- and postpartum fear of childbirth (FOC). MATERIAL AND METHODS: Participants from 13 midwifery practices and four hospitals in Southwest Netherlands filled out questionnaires at 30 weeks' gestation (n = 561) and two months postpartum (n = 463), including questions on preferred mode of delivery, the Wijma Delivery Expectancy/Experience Questionnaire (W-DEQ) and Hospital Anxiety Depression Scale (HADS). Results were related to obstetric data. RESULTS: Both severe FOC (OR 7.0, p < .001) and previous Cesarean section (CS) (OR 16.6, p < .001) predicted preference for CS. Severe prepartum FOC also predicted actual CS. Preferring a vaginal delivery (VD) and actually having a CS predicted higher postpartum W-DEQ scores (partial r = 0.107, p < .05). Other significant predictors for high postpartum W-DEQ scores were high prepartum W-DEQ (partial r = 0.357) and HADS anxiety scores (partial r = 0.143) and the newborn in need of medical assistance (partial r = -0.169). CONCLUSIONS: Women preferring a VD but ending up with a CS are at risk for severe FOC postpartum, while the same risk was not demonstrated for women who preferred a CS but had a VD. Prepartum FOC is strongly associated with postpartum FOC, regardless of congruence between preferred and actual mode of delivery.

Health state utilities associated with treatment for transfusion-dependent ß-thalassemia.

OBJECTIVES: Transfusion-dependent ß-thalassemia (TDT) is a genetic disease that affects production of red blood cells. Conventional treatment involves regular red blood cell transfusions and iron chelation, which has a substantial impact on quality of life. While potentially curative, allogeneic hematopoietic stem cell transplantation (allo-HSCT) is associated with risk of complications, including graft-versus-host disease (GvHD). Gene addition therapy, a novel treatment approach, involves autologous transplantation of the patient's own genetically modified hematopoietic stem cells. The purpose of this study was to estimate utilities associated with treatment approaches for TDT. METHODS: General population respondents in England valued eight health state vignettes (developed with clinician, patient, and parent input) in time trade-off interviews. RESULTS: A total of 207 participants completed interviews (49.8% female; mean age = 43.2 years). Mean (SD) utilities for the pre-transplant health states were 0.73 (0.25) with oral chelation and 0.63 (0.32) with subcutaneous chelation. Mean utilities for the transplant year were 0.62 (0.35) for gene addition therapy, 0.47 (0.39) for allo-HSCT, and 0.39 (0.39) for allo-HSCT with acute GvHD. Post-transplant utilities were 0.93 (0.15) for transfusion independent, 0.75 (0.25) for 60% transfusion reduction, and 0.51 (0.38) for chronic GvHD. Acute and chronic GvHD were associated with significant disutility (acute = - 0.09, p < 0.0001; chronic = - 0.42, p < 0.0001). CONCLUSIONS: Utilities followed expected patterns, with logical differences between treatment options for TDT and substantially greater utility for transfusion independence than for ongoing treatment involving transfusion and chelation. These utilities may be useful in cost-utility models estimating the value of treatments for TDT.

Hospital nurses and home care providers' experiences of participation in nutritional care among older persons and their family caregivers: a qualitative study.

BACKGROUND: A person-centred approach to nutritional care has the potential to increase an older person's role in making informed decisions about their own care and possibly improving their quality of life. However, despite the considerable interest shown in person-centred nutritional care in recent years, delivery of such care still appears to lack consideration for older persons' needs and preferences. The present study aimed to explore healthcare professionals' views on how older persons and their family caregivers participate in decisions about their own nutritional care and possible barriers for that participation. METHODS: Semi-structured in-depth interviews with 23 healthcare professionals in acute geriatric care and home care were conducted. Data were analysed thematically. RESULTS: The analysis of the interviews resulted in three main themes: (i) lack of shared decision-making in nutritional care; (ii) conflict between patient's preferences and standard nutritional care procedures; and (iii) the value of family caregivers who are seldom involved in nutritional care. CONCLUSIONS: Healthcare professionals were aware of the importance of actively engaging older persons and their family members in the nutritional care to achieve positive outcomes. However, they encountered individual and structural barriers, including resistance from patients and family caregivers, conflicts between the patients' nutritional wishes and standard nutritional procedures, a wish to shield the family caregivers from the stress of caring for a sick relative, and lack of time and caring structures that facilitate the older persons and their family's active participation.

Barriers to women's access to alongside midwifery units in England.

BACKGROUND: Alongside midwifery units (AMUs) are managed by midwives and proximate to obstetric units (OUs), offering a home-like birth environment for women with straightforward pregnancies. They support physiological birth, with fast access to medical care if needed. AMUs have good perinatal outcomes and lower rates of interventions than OUs. In England, uptake remains lower than potential use, despite recent changes in policy to support their use. This article reports on experiences of access from a broader study that investigated AMU organisation and care. METHODS: Organisational case studies in four National Health Service (NHS) Trusts in England, selected for variation geographically and in features of their midwifery units. Fieldwork (December 2011 to October 2012) included observations (>100 h); semi-structured interviews with staff, managers and stakeholders (n = 89) and with postnatal women and partners (n = 47), on which this paper reports. Data were analysed thematically using NVivo10 software. RESULTS: Women, partners and families felt welcome and valued in the AMU. They were drawn to the AMUs' environment, philosophy and approach to technology, including pain management. Access for some was hindered by inconsistent information about the existence, environment and safety of AMUs, and barriers to admission in early labour. CONCLUSIONS: Key barriers to AMUs arise through inequitable information and challenges with admission in early labour. Most women still give birth in obstetric units and despite increases in the numbers of women birthing on AMUs since 2010, addressing these barriers will be essential to future scale-up.

Preferred Music Listening Intervention in Nursing Home Residents with Cognitive Impairment: A Randomized Intervention Study.

BACKGROUND: The current trend in addressing symptoms of dementia comprises non-pharmacological strategies such as music interventions for the management and improvement of cognitive function, memory, agitation, depression, or anxiety. OBJECTIVE: To determine the impact of a preferred music listening group intervention upon the functional, cognitive, and emotional dimensions in nursing home residents. METHODS: A randomized intervention study was carried out. The study was conducted from June to August 2015, and involved a preferred music listening group intervention lasting 60 minutes, 5 days/week during 8 weeks. A total of 119 adults aged ≥65 years, with annual permanent residence in the nursing home (Málaga, Spain) were included in the study. 47 (39.5%) subjects were randomized to the music group intervention. The nurses and physiotherapists were blinded to the assessments. RESULTS: The sample had a mean age of 80.52 (SD7.44) years, with female predominance. The subjects presented dependency in Barthel, and cognitive impairment as determined by the MMSE. The Tinetti scores yielded fall risk and depression as evidenced by the Yesavage scale. The Cornell scores evidenced no depression in elderly people with dementia. Following the intervention, function improved significantly with a medium effect size, as did emotional state, with a large effect size. Cognitive function was seen to worsen in the control group, but remained stable in the intervention group, with a large effect size. CONCLUSIONS: A preferred music listening group intervention among elderly people in nursing homes is effective, resulting in improvements in functional and emotional condition.

Enabling patients with advanced chronic obstructive pulmonary disease to identify and express their support needs to health care professionals: A qualitative study to develop a tool.

BACKGROUND: Patients with advanced chronic obstructive pulmonary disease have difficulty reporting their holistic support needs to health care professionals, undermining delivery of person-centred care. We lack tools that directly support patients with this. AIM: To develop an evidence-based, designed-for-purpose, tool to enable patients to directly identify and express support needs to health care professionals. DESIGN: Two-stage qualitative study. Stage 1: domains of support need were identified through a systematic review, analysis of an established qualitative dataset and patient/carer focus groups. Stage 2: draft tool developed using the identified domains of need and then refined through feedback from patients, carers and health care professionals, ensuring acceptability and suitability. SETTING/PARTICIPANTS: Stage 1 patients/carers recruited via four primary care practices and two patient support groups (East of England). Stage 2 health care professionals recruited via the Clinical Research Network and local community trust and patients/carers through two further practices and two additional support groups (East of England). In total, 57 patients, carers and health care professionals participated. RESULTS: A comprehensive set of evidence-based support domains (for example: overcoming boredom or loneliness, knowing what to expect in the future) was identified and formulated into questions. The resulting tool asks patients to consider whether they need more support in 15 broad areas. Patients, carers and clinical stakeholders broadly endorsed the tool's content and wording. CONCLUSION: The Support Needs Approach for Patients (SNAP) tool is a concise evidence-based tool designed to help patients with advanced chronic obstructive pulmonary disease identify and express their support needs to enable delivery of person-centred care.

Explaining experiences of community-dwelling older adults with a pro-active comprehensive geriatric assessment program - a thorough evaluation by interviews.

INTRODUCTION: Pro-active assessment programs are increasingly used to improve care for older adults. These programs include comprehensive geriatric tailored to individual patient preferences. Evidence for the effects of these programs on patient outcomes is nevertheless scarce or ambiguous. Explaining these dissatisfying results is difficult due to the multi-component nature of the programs. The objective of the current study was to explore and explain the experience of older adults participating in a pro-active assessment program, to help to clarify the effects. METHODS: Semi-structured in-depth interviews were held with 25 participants of a pro-active assessment program for frail community-dwelling adults aged 65+. This study was part of an evaluation study on the effects of the program. Transcripts were analysed with thematic analysis and cross-case analysis. RESULTS: The participants' mean age was 78.5 (SD 6.9) and 56% was female. The majority of the participants were satisfied with the program but based this on communication aspects, since only a few of them expressed real program benefits. Participant experiences could be clustered in six themes: (1) All participants expressed the need for a holistic view which was covered in the program, (2) the scope of the CGA was broader than expected or unclear, (3) the program delivered unexpected but valued help, (4) participants described a very low sense of ownership, (5) timing of the program implementation or the CGA was difficult and(6), participants and care workers had a different view on what to consider as a problem. These experiences could be explained by three program components: the degree of (the lack of) integration of the program within usual care, the pro-active screening method and the broader than expected, but appreciated multi-domain approach. CONCLUSION: Older adults' need for a holistic view is covered by this outpatient assessment program. However, their engagement and the correct timing of the program are hampered by the pro-active recruitment and the limited integration of the program within existing care. Furthermore, satisfaction seems an insufficient guiding factor when evaluating CGA programs for older adults because it does not reflect the impact of the program.