Need For Patient-centered Care Research Articles

2024 Recommendations on the Optimal Use of Lipid-Lowering Therapy in Established Atherosclerotic Cardiovascular Disease and Following Acute Coronary Syndromes: A Position Paper of the International Lipid Expert Panel (ILEP).

Atherosclerotic cardiovascular disease (ASCVD) and consequent acute coronary syndromes (ACS) are substantial contributors to morbidity and mortality across Europe. Fortunately, as much as two thirds of this disease's burden is modifiable, in particular by lipid-lowering therapy (LLT). Current guidelines are based on the sound premise that, with respect to low-density lipoprotein cholesterol (LDL-C), "lower is better for longer", and recent data have strongly emphasised the need for also "the earlier the better". In addition to statins, which have been available for several decades, ezetimibe, bempedoic acid (also as fixed dose combinations), and modulators of proprotein convertase subtilisin/kexin type 9 (PCSK9 inhibitors and inclisiran) are additionally very effective approaches to LLT, especially for those at very high and extremely high cardiovascular risk. In real life, however, clinical practice goals are still not met in a substantial proportion of patients (even in 70%). However, with the options we have available, we should render lipid disorders a rare disease. In April 2021, the International Lipid Expert Panel (ILEP) published its first position paper on the optimal use of LLT in post-ACS patients, which complemented the existing guidelines on the management of lipids in patients following ACS, which defined a group of "extremely high-risk" individuals and outlined scenarios where upfront combination therapy should be considered to improve access and adherence to LLT and, consequently, the therapy's effectiveness. These updated recommendations build on the previous work, considering developments in the evidential underpinning of combination LLT, ongoing education on the role of lipid disorder therapy, and changes in the availability of lipid-lowering drugs. Our aim is to provide a guide to address this unmet clinical need, to provide clear practical advice, whilst acknowledging the need for patient-centred care, and accounting for often large differences in the availability of LLTs between countries.

Chronic management and recurrent challenges: a case of multifocal spinal hemangiopericytoma over 7 years. Illustrative case.

Spinal hemangiopericytoma (sHPC) is a rare vascular tumor that presents significant challenges in diagnosis and management due to its potential for recurrence and metastasis. This report documents the 7-year clinical course of a 68-year-old female diagnosed with multifocal sHPC. The patient initially presented with myelopathy due to a spinal mass, which was managed with resection, followed by several years of stability. Subsequent magnetic resonance imaging (MRI) revealed new growths, necessitating further interventions, including stereotactic radiosurgery. Despite the recurrence and progression of the disease, the strategic use of surgical and radiosurgical interventions demonstrated significant efficacy in managing tumor growth and alleviating symptoms. This case emphasizes the critical importance of continual surveillance and a multidisciplinary approach in the treatment of sHPC. Continuous monitoring through regular MRI is essential for early detection of recurrences. Adaptable treatment strategies, including resection and radiosurgery, are necessary to manage the complex dynamics of tumor behavior. This report also highlights the need for patient-centered care and flexible, individualized treatment plans to ensure optimal patient outcomes in the face of recurrent and multifocal disease manifestations. https://thejns.org/doi/10.3171/CASE24368.

Attitudes Toward Hysterectomy in Saudi Arabian Women Undergoing Evaluation for Uterovaginal Prolapse: A Cross-Sectional Study.

Hysterectomy isan effective management approach for uterovaginal prolapse. However, the decision to undergo hysterectomy is a complex matter, influenced not only by medical factors but also cultural beliefs, societal norms, and individual attitudes.In Saudi Arabia, a nation with its distinctive cultural and social norms, the understanding of women's attitudes toward hysterectomy is of utmost importance. Unfortunately, such related attitudes have not been explored. This first-ever study aimed to investigate the attitudes toward hysterectomy among Saudi Arabian women undergoing evaluation for uterovaginal prolapse, by exploring the factors influencing their decision-making process and treatment choices, with a particular focus on the potential impact of cultural beliefs and societal norms. A survey was conducted among 404 women referred for uterovaginal prolapse evaluation. The participants completed a self-administered questionnaire, which included demographic information, perceptions on hysterectomy's impact on well-being, and factors affecting decision-making. The mean ± standard deviation of participants was 51.07 ± 11.1 years. Most participants were currently married (n=327, 81%), were unemployed (n=309, 76.5%), and had an "excellent" self-rated general health status (n=138, 34%). Current prolapse management methods included Kegel exercises (n=103, 25.5%), pessary use (n=32, 8%), physical therapy (n=12, 3%), planned surgery (n=75, 18.5%), and no specific treatment (n=182, 45%). Overall, the study revealed diverse findings on the potential perceived impact of hysterectomy on different aspects of well-being. Notably, for pain symptoms, 152 participants (38%) reported potential improvement, while 123 participants (30%) predicted worsening, and 129participants (32%) anticipated no change. Moreover, the study unveiled insights into the factors influencing patients' decision-making between hysterectomy and uterine-sparing procedures. Remarkably, 97 respondents (24%) considered the doctor's opinion to be "very Important," while 91 respondents (22%) rated the impact on surgical complication risk as "very important." Furthermore, the desire to preserve all healthy organs was deemed "very important" by 106 respondents (26%). The resources of information women depended on when making a decisionto undergo hysterectomy varied and included a second opinion from another physician (n=68, 17%), social media (n=81, 20%), opinion from spouse/partner (21%), second opinion from female family members (n=99, 25%), and opinion from friends (n=70, 17%).Regarding preferences for decision-making, the responses varied substantially. Overall, 65 participants (16%) indicated a preference for their doctor to make the decision entirely, 81 participants (20%) preferred shared decision-making with their doctor, 89 participants (22%) wanted their doctor to make the decision after considering their input, 77 participants (19%) wished to make the final decision after discussing it with their doctor, and 93 participants (23%) expressed a preference for independently making the final decision. Lastly, correlations between women's responses and some demographic factors were identified. This pioneering study provides valuable insights into Saudi Arabian women's attitudes toward hysterectomy, emphasizing the need for patient-centered care and culturally sensitive approaches in managing uterovaginal prolapse.

A Review of Miscarriage and Healthcare Communication in the United States

ABSTRACT Miscarriage is a pervasive and socioemotionally complex pregnancy complication. Evidence suggests that poor clinical management can worsen these experiences. Yet, assessments of healthcare communication during a miscarriage are limited and a systematic review of the literature is needed. This review identified and synthesized original research on miscarriage and healthcare communication in the United States from the past 20 years to identify existing knowledge gaps for future miscarriage research. The following databases were searched: PubMed, PsychINFO, and ERIC Database. Data were charted according to Arksey and O’Malley’s Scoping Review Framework. Eleven articles were included in the review and three primary themes emerged: (a) patients overwhelmingly prefer patient-centered care; (b) miscarriage is often overmedicalized, which leads to poor communication; and (c) informed decision-making related to one’s miscarriage can improve patient experiences. Several gaps were also identified, including studies seeking physician perspectives on miscarriage communication, evaluation of standard care guidelines, and studies evaluating diverse patients’ perspectives. This review highlights the need for patient-centered care that utilizes compassionate and accessible language and promotes informed decision-making. Future research should use quantitative methodologies and longitudinal designs to build upon these findings and improve patient experiences of miscarriage.

Using a discrete choice experiment to elicit patients’ preferences and willingness-to-pay for knee osteoarthritis treatments in Thailand

Osteoarthritis is the most common type of joint disease among elderly patients around the world. In response to the need for patient-centered care, patients’ and physicians’ preferences for knee osteoarthritis treatments have been studied in multiple countries, but not in Thailand. The objective of this study was to investigate Thai patients’ preferences and their willingness to pay (WTP) for knee osteoarthritis treatments by using a discrete choice experiment (DCE). Six knee osteoarthritis treatment attributes, including pain relief, delayed disease progression, gastrointestinal side effects, kidney side effects, cardiovascular side effects, and cost, were used to develop a paper-based, DCE questionnaire survey. Patients with knee osteoarthritis, who were at least 18 years old and who provided written informed consent, were recruited from the orthopedic department in a tertiary care hospital in Thailand via convenience sampling. The conditional logit model was used to determine patients’ preferences and WTP. The Institutional Review Board at Chulalongkorn University approved this study before it started. A total of 232 patients were collected and analyzed in this study. Patients preferred treatments with a higher efficacy (pain relief and delayed disease progression), a lower probability of side effects (gastrointestinal, kidney, and cardiovascular side effects), and a lower cost. Regarding efficacy and side effects, the patients weighted the importance of a 1% change in cardiovascular side effects (− 0.08) more heavily than 1% changes in kidney (− 0.07) and gastrointestinal (− 0.02) side effects, delayed disease progression (0.02), and pain relief (0.01). Patients were willing to pay 29.56 Thai Baht (THB) and 41.84 THB per month for every 1% increase in pain relief and delayed disease progression, respectively. Conversely, patients were willing to pay 52.04 THB, 145.18 THB and 164.23 THB per month for every 1% decrease in gastrointestinal, kidney, and cardiovascular side effects, respectively. In conclusion, pain relief, delayed disease progression, gastrointestinal side effects, kidney side effects, cardiovascular side effects, and the cost of treatment were significant factors among patients undergoing knee osteoarthritis treatment. Additionally, patients had a higher WTP for delayed disease progression than pain relief and a higher WTP for a reduced probability of cardiovascular side effects than gastrointestinal and kidney side effects. These findings could be used to support treatment decisions for knee osteoarthritis patients in Thailand.

Patient-centered care in the Middle East and North African region: a systematic literature review

BackgroundThe need for patient centered care (PCC) and its subsequent implementation has gained policy maker attention worldwide. Despite the evidence showing the benefits and the challenges associated with practicing PCC in western countries there has been no comprehensive review of the literature on PCC practice in the Middle East and North African (MENA) region, yet there is good reason to think that the practices of PCC in these regions would be different.ObjectivesThis paper summarizes the existing research on the practice of PCC in the MENA region and uses this analysis to consider the key elements of a PCC definition based on MENA cultural contexts.MethodsFive electronic databases were searched (EMBASE, Cochrane, Medline, CINAHL and Scopus) using the search terms: patient OR person OR client OR consumer AND centered OR centred AND care. The MENA countries included were Bahrain, Iran, Iraq, Jordan, Kuwait, Lebanon, Oman, Palestine, Israel, Qatar, Saudi Arabia, Syria, United Arab Emirates, Yemen, Algeria, Egypt, Libya, Morocco, Tunisia, Djibouti, Pakistan, Sudan, and Turkey. Identified papers were imported to Covidence where they were independently reviewed against the inclusion criteria by two authors. The following data were extracted for each paper: author, year, location (i.e., country), objectives, methodology, study population, and results as they related to patient centred care.ResultThe electronic search identified 3582 potentially relevant studies. Fifty articles met the inclusion criteria. Across all papers five themes were identified: 1) patient centered care principles; 2) patient and physician perceptions of PCC; 3) facilitators of PCC; 4) implementation and impact of PCC; and 5) barriers to PCC.ConclusionThe preliminary findings suggest that the concept of PCC is practiced and supported to a limited extent in the MENA region, and that the implementation of PCC might be impacted by the cultural contexts of the region. Our review therefore highlights the importance of establishing patient-centered care definitions that clearly incorporate cultural practices in the MENA region. The elements and impact of culture in the MENA region should be investigated in future research.

Experiences with cross-sectional healthcare and treatment in heart failure patients: implications for medical education.

to explore how cross-sectional healthcare and treatment is experienced a) by patients with advanced heart failure and multimorbidity and b) by hospital-employed healthcare professionals. Individual telephone interviews with 18 patients and close relatives were conducted. Furthermore, a focus group session was conducted with four specialised hospital-employed healthcare professionals. Purposeful sampling was used and interviews were semi-structured. Data were analysed using qualitative inductive content analysis. Three main themes emerged from the interviews with patients and close relatives. These included: 1) A need for improved coordination to ensure continuity of care; 2) a plea for patient-centred care; and 3) recognition of the need to care for close relatives. Analysis of the interviews with hospital-employed healthcare professionals also produced three themes. These concerned: 1) recognition of the role and needs of close relatives; 2) limited resources for and difficulties in meeting these needs; and 3) agreement on the need for patient-centred care. Furthermore, we learned that perceived challenges are rooted in time constraints and the need for an adequate level of medical knowledge of chronic conditions and complex treatment strategies. This study indicates that cross-sectional healthcare and treatment of patients with advanced heart failure and multimorbidity lacked coordination, was insufficiently patient-centred and did not cater for close relatives' needs. The study identifies patient-centredness and coordination of healthcare services targeting patients and close relatives alike as critical to proper care, medical curriculum development and continued medical training courses.

Experiences of adults living with a kidney transplant-Effects on physical activity, physical function, and quality of life: A descriptive phenomenological study.

Although kidney transplantation is the best treatment for kidney failure, scarce research has examined its effects on physical activity, physical functionand quality of life. To investigate the experiences of a group of adults living with advanced kidney disease focusing on quality of life, physical activityand function and to see how findings differ in a group of kidney transplant recipients. Individual semi-structured interviews were conducted with adults with advanced kidney disease (n = 10; 70.5 ± 8.9 years) and adults who had received a kidney transplant (n = 10; 50.7 ± 11.5 years; transplant age: 42.7 ± 20.9 months). Interviews were transcribed verbatim, thematically analysedand composite vignettes developed. Individuals with advanced kidney disease described a sense of loss and alteration to their life plans. Kidney transplant recipients reported increased freedom, independenceand a return to near normality, with improved quality of life, physical activityand function compared with their pre-transplant lives. However, transplant recipients also described living with anxiety about the health of their transplant and fear it may fail. Whilst adults living with advanced kidney disease often experience a reduced quality of life, physical activity and function, kidney transplantation can help facilitate a return to pre-disease levels of physical activity, physical function and quality of life. However, transplant recipients also reported living with anxiety around their new kidney failing. This study demonstrates the variability in the lived experiences of adults living with advanced kidney disease or a kidney transplant and highlights the need for patient-centred care.

E-HEalth treatment in Long-term Dialysis (E-HELD): study protocol for a multicenter randomized controlled trial evaluating personalized Internet-based cognitive-behavioral therapy in dialysis patients

BackgroundKidney failure and dialysis treatment have a large impact on a patient’s life. Patients experience numerous, complex symptoms and usually have multiple comorbid conditions. Despite the multitude of problems, patients often have priorities for improvement of specific aspects of their functioning, which would be helpful for clinicians to become informed of. This highlights a clear need for patient-centered care in this particular patient group, with routine screening as a vital element to timely recognize symptoms and tailored treatment to match individual patients’ needs and priorities. By also providing feedback on patient’s screening results to the patient itself, the patient is empowered to actively take control in one’s mostly uncontrollable disease process. The current paper describes the study design of a multicenter randomized controlled trial evaluating the effectiveness of the “E-HEealth treatment in Long-term Dialysis” (E-HELD) intervention. This therapist-guided Internet-based cognitive-behavioral therapy (ICBT) intervention is focused on and personalized to the myriad of problems that dialysis patients experience and prioritize.MethodsAfter a screening procedure on adjustment problems, 130 eligible dialysis patients will be randomized to care as usual or the E-HELD intervention. Patients will complete questionnaires on distress (primary outcome measure), several domains of functioning (e.g., physical, psychological, social), potential predictors and mediators of treatment success, and the cost-effectiveness of the intervention, at baseline, 6-month follow-up, and 12-month follow-up. In addition, to take account of the personalized character of the intervention, the Personalized Priority and Progress Questionnaire (PPPQ) will be administered which is a personalized instrument to identify, prioritize, and monitor individual problems over time.DiscussionThe present study design will provide insight in the effectiveness of tailored ICBT in patients with kidney failure who are treated with dialysis. When proven effective, the screening procedure and the subsequent ICBT intervention could be implemented in routine care to detect, support, and treat patients struggling with adjustment problems.Trial registrationNL63422.058.17 [Registry ID: METC-LDD]NL7160 [Netherlands Trial Register; registered on 16 July 2018]

Prioritization of indicators of the quality of care provided to older adults with frailty by key stakeholders from five canadian provinces

BackgroundTo meet the needs of older adults with frailty better, it is essential to understand which aspects of care are important from their perspective. We therefore sought to assess the importance of a set of quality indicators (QI) for monitoring outcomes in this population.MethodsIn this mixed-method study, key stakeholders completed a survey on the importance of 36 QIs, and then explained their ratings in a semi-structured interview. Stakeholders included older adults with frailty and their caregivers, healthcare providers (HCPs), and healthcare administrators or policy/decision makers (DMs). We conducted descriptive statistical analyses of quantitative variables, and deductive thematic qualitative analyses of interview transcripts.ResultsThe 42 participants (8 older adults, 18 HCPs, and 16 DMs) rated six QIs as more important: increasing the patients’ quality of life; increasing healthcare staff skills; decreasing patients’ symptoms; decreasing family caregiver burden; increasing patients’ satisfaction with care; and increasing family doctor continuity of care.ConclusionsKey stakeholders prioritized QIs that focus on outcomes targeted to patients and caregivers, whereas the current healthcare systems generally focus on processes of care. Quality improvement initiatives should therefore take better account of aspects of care that are important for older adults with frailty, such as having a chance to express their individual goals of care, receiving quality communications from HCPs, or monitoring symptoms that they might not spontaneously describe. Our results point to the need for patient-centred care that is oriented toward quality of life for older adults with frailty.

Factors Associated with Treatment Satisfaction Among People Living with HIV in Japan and Other Selected Countries: Examination of the Intertwined Roles of Medication, Patient, and Provider Characteristics

We examined satisfaction and perceived challenges with antiretroviral therapy (ART) among people living with HIV (PLHIV) in Japan vs three other Asian countries (China, Taiwan, South Korea), and 21 non-Asian countries, using data from the 2019 Positive Perspectives Study (pooled sample size from all 25 countries = 2389). Participants in other Asian countries were more likely than those in Japan to report they missed ART ≥ 1 time in the past month because they were depressed/overwhelmed (57.4%[89/155] vs 32.0%[24/75]), had privacy concerns (56.8%[88/155] vs 30.7%[23/75]), were concerned about the potential long-term negative impacts of ART (46.5%[72/155] vs 26.7%[20/75]), or just wanted to forget about HIV (45.8%[71/155] vs 22.7%[17/75]). ART satisfaction however did not differ significantly between surveyed PLHIV in Japan (54.7%[41/75]) vs those in other Asian countries (47.7%[74/155]). The percentage who felt that daily ART dosing limited their lives was 36.0%[27/75] among participants from Japan, 48.4%[75/155] among participants from other Asian countries, and 27.3%[589/2159] among those from non-Asian countries. Within a structural equation model using pooled data from all 25 countries, positive correlations were seen between ART satisfaction and “provider engagement” (β = 0.35), high perceived control over ART dosing schedule (β = 0.28), and the belief that ART prevents HIV transmission (β = 0.16). Conversely, negative correlations were seen between ART satisfaction and experience of ART side-effects (β = − 0.24), high “ART anxiety” (β = − 0.20); and being on multi-tablet regimens (β = − 0.13). Those ART-satisfied reported higher self-rated health and greater ART adherence. These findings underscore the need for patient-centered care to enhance treatment satisfaction and improve ART adherence.

Disparate healthcare experiences of people living with overweight or obesity in England.

BackgroundEnsuring that patients have high quality, equitable experiences in healthcare is a high priority in the UK. As such, identifying and addressing areas where patient experiences are unsatisfactory and inequitable is of high priority, and has been included as part of the National Health Service (NHS) England equity objectives.MethodsThe healthcare experiences of people who identified as living with overweight or obesity were gathered from freely available websites using the Patient Experience Platform (PEP). PEP was used to gather and analyse all comments from NHS UK, Google, Facebook and Twitter that related to care experiences of people who identified as living with overweight or obesity across all NHS Acute and Specialist Trusts and all general practitioners (GPs) in England from 01/01/2018 to 31/12/2020. These healthcare experiences were analysed to provide care quality metrics, a comparison of care across regions of England, and to explore associations between behavioural clusters of personality attributes, values and sentiment with care quality metrics.FindingsPerceptions of the quality of care were significantly lower for people who identified as living with overweight or obesity compared to people who didn't identify as living with overweight or obesity across all regions for ‘Effective Treatment’ and ‘Emotional Support’. The perceived quality of care metrics can be predicted by the behavioral clusters, where for instance, the experiences of people who identified as living with overweight or obesity in the negative behavioral cluster have a lower overall perceived quality of care score. Themes arising from the data also highlighted that barriers quality care experienced by people who identified as living with obesity include the speed of access, effective treatment, and emotional support, with stigmatising healthcare experiences are reported.InterpretationThe findings of this study provide insights into the experiences reported via freely available websites, of people who self-identified as living with overweight or obesity in healthcare in England. These insights demonstrate that the perceived quality of care was lower for people who identified as living with overweight or obesity compared to the general population, and that there is regional variation in care quality. The study has also shown that patient experiences differ based on personality attributes, values and sentiment, highlighting the need for patient-centred care and personalised approaches. These findings hold important considerations for healthcare and policy makers aiming to address healthcare inequity.

Validating Goal Attainment in Veterans Undergoing Decompressive Laminectomy: A Preliminary Study

Although decompressive laminectomy (DL) for lumbar spinal stenosis (LSS) is a common procedure among older adults, it is unclear whether surgical definitions of success translate into patient-defined success. Using goal attainment scaling (GAS) to compare goal achievement between individuals, we investigated the relationship between surgical-defined functional recovery and achievement of personalized goals in patients who underwent DL for LSS. Twenty-eight community-dwelling veterans scheduled to undergo DL. Participants were interviewed over the phone to set 1-year post-DL goals within 30 days before undergoing DL. Brigham Spinal Stenosis (BSS) score, comorbidities, cognitive function, and psychological factors also were assessed. GAS and BSS were repeated 1 year after DL. GAS scores were transformed into GAS-T scores (T-score transformation) to standardize achievement between patients and GAS-T change scores to compare study variables. Seventeen of 28 participants had successful DL outcomes by BSS standards, though none of the participants achieved all of their GAS goals, with follow-up GAS-T scores averaging 44.5 ± 16.8. All three BSS scales positively correlated with GAS-T change scores: severity change r = 0.52, P = 0.005; physical function change r = 0.51, P = 0.006; and satisfaction r = 0.70, P < 0.001. Covariate analysis revealed a negative correlation between GAS-T change score and fear-avoidance beliefs: r = -0.41, P = -0.029. There was congruent validity between GAS and the BSS in older veterans undergoing DL for LSS. Given the need for patient-centered care in older adults, future investigations exploring GAS in larger studies that target additional pain conditions and include participants with greater demographic diversity are warranted.

How are women supported in making decisions regarding fertility preservation after a breast cancer diagnosis?

Although there has been an increase in fertility preservation treatment options in recent years, existing evidence would suggest that many young women who have breast cancer do not feel well supported in making decisions in this area. A breast cancer diagnosis and the possibility of becoming infertile are known to cause psychological issues for young women and many find it difficult to make decisions at this time, causing them a great deal of stress and anxiety. Given the need for patient-centred care, this literature review looked at the decision-making support given to women with a diagnosis of breast cancer as part of fertility preservation treatment. The review found that women lacked support and struggled to make decisions at this critical point in their lives. The findings of the review suggest that women would benefit from a wide range of decision support interventions prior to and following diagnosis.

“We don’t talk about his heart”: Narrative sense-making and long-term readjustment among older out-of-hospital cardiac arrest survivors and their spouses

Aim of the studyGlobally, there has been an increase in the survival rate and the average age of survivors from out-of-hospital cardiac arrest (OHCA). However, little is known about the joint OHCA-associated experiences among older survivors and their spouses in a long-term perspective. The aim of this study was to explore how narrative sense-making processes following OHCA shapes everyday life in a long-term perspective among older survivors and their spouses. MethodsFive older male survivors and their female spouses were interviewed individually using narrative methods. Arthur Frank’s theory on illness narratives informed the analysis. Participant observation at two meetings for survivors and relatives regarding cardiac arrest was used for qualification of the interview guide. ResultsFive married couples participated. The mean age of the survivors and spouses was 70,4 and 71,4 years respectively, and time since OHCA varied from 12 to 66 months. Two themes of the dyadic experience emerged: 1) experiences during OHCA, and 2) experiences in life following OHCA. Subthemes differed with survivors emphasising a desire to return to the same life as before the OHCA, and the spouses narrating feelings of anxiety. Potential complications of the OHCA were often explained with reference to ageing processes, and the OHCA was contextualised in relation to previous life-changing events. ConclusionIn a long-term perspective, OHCA shapes the life trajectory of both the survivor and the spouse, and the relationship between them, underscoring a need for patient-centred care with a greater focus on the relationship of the dyads.

The rocks and hard places of MAiD: a qualitative study of nursing practice in the context of legislated assisted death

BackgroundMedical Assistance in Dying (MAiD) was legalized in Canada in June, 2016. The Canadian government’s decision to legislate assisted dying, an approach that requires a high degree of obligation, precision, and delegation, has resulted in unique challenges for health care and for nursing practice. The purpose of this study was to better understand the implications of a legislated approach to assisted death for nurses’ experiences and nursing practice.MethodsThe study used a qualitative approach guided by Interpretive Description. Semi-structured interviews were conducted with 59 registered nurses and nurse practitioners. Interviews were audio-recorded, transcribed, and managed using qualitative analysis software. Analysis followed a procedure of data immersion, open coding, constant comparative analysis, and the construction of a thematic and interpretive account.ResultsNurses in this study described great variability in how MAiD had been enacted in their work context and the practice supports available to guide their practice. The development of systems to support MAiD, or lack thereof, was largely driven by persons in influential leadership positions. Workplaces that supported a range of nurses’ moral responses to MAiD were most effective in supporting nurses’ well-being during this impactful change in practice. Participants cited the importance of teamwork in providing high quality MAiD-related care; although, many worked without the benefit of a team. Nursing work related to MAiD was highly complex, largely because of the need for patient-centered care in systems that were not always organized to support such care. In the absence of adequate practice supports, some nurses were choosing to limit their involvement in MAiD.ConclusionsData obtained in this study suggested that some workplace contexts still lack the necessary supports for nurses to confidently meet the precision required of a legislated approach to MAiD. Without accessible palliative care, sufficient providers, a supportive team, practice supports, and a context that allowed nurses to have a range of responses to MAiD, nurses felt they were legally and morally at risk. Nurses seeking to provide the compassionate care consistent with such a momentous moment in patients’ lives, without suitable supports, find themselves caught between the proverbial rock and hard place.

Adapting the Goal Attainment Approach for Major Depressive Disorder.

The need for patient-centered care has become a focal point of healthcare improvement initiatives. Shared decision making—in which patients and clinicians communicate about various treatment options and goals and patient input is considered when making treatment decisions—has been associated with improved health and quality of life. A method of treatment evaluation allowing incorporation of patient-specific goals and perspectives is of increasing interest to healthcare providers, payers, and patients. An approach that allows incorporation of shared goal setting is possible via use of an instrument called the Goal Attainment Scale (GAS). This scale provides the structure for measuring progress toward treatment goals set through patient–clinician collaboration. The goal attainment approach has been used as a primary outcomes measure in numerous studies but not in major depressive disorder (MDD). As MDD is a complex, multidimensional disorder affecting each patient differently, the use of GAS methodology is a relevant framework for setting personalized meaningful treatment goals. Initial research into the feasibility of using the GAS in MDD (GAS-D) to measure patient-centric outcomes that may be neglected when more traditional scales are used has been encouraging. The objective of this Commentary is to provide background and rationale for implementation of the GAS-D in clinical practice.Funding Takeda Pharmaceutical Company, Ltd., and Lundbeck LLC.

Evaluation of a Telemedicine Service Run with a Patient-Centred Care Model.

The number of patients with chronic conditions and multi-morbidities is increasing, addressing a need for patient-centred care. The research project Patients and Professionals in Productive Teams aims to study patient-centred teamwork for this patient group. This paper presents an evaluation of a telemedicine service for chronic obstructive pulmonary disease patientsrun with a patient-centred care model. Observations and interviews were made to study the technology use and information flow. The results showed that the technology worked well in a patient-centred care perspective, even though the system was a standalone system for telemedicine services. The information in the system was only available for professionals providing the telemedicine services and was not shared with other health care providers.

Determining requirements for patient-centred care: a participatory concept mapping study

BackgroundRecognition of a need for patient-centred care is not new, however making patient-centred care a reality remains a challenge to organisations. We need empirical studies to extend current understandings, create new representations of the complexity of patient-centred care, and guide collective action toward patient-centred health care. To achieve these ends, the research aim was to empirically determine what organisational actions are required for patient-centred care to be achieved.MethodsWe used an established participatory concept mapping methodology. Cross-sector stakeholders contributed to the development of statements for patient-centred care requirements, sorting statements into groupings according to similarity, and rating each statement according to importance, feasibility, and achievement. The resultant data were analysed to produce a visual concept map representing participants’ conceptualisation of patient-centred care requirements. Analysis included the development of a similarity matrix, multidimensional scaling, hierarchical cluster analysis, selection of the number of clusters and their labels, identifying overarching domains and quantitative representation of rating data.ResultsThe outcome was the development of a conceptual map for the Requirements of Patient-Centred Care Systems (ROPCCS). ROPCCS incorporates 123 statements sorted into 13 clusters. Cluster labels were: shared responsibility for personalised health literacy; patient provider dynamic for care partnership; collaboration; shared power and responsibility; resources for coordination of care; recognition of humanity – skills and attributes; knowing and valuing the patient; relationship building; system review evaluation and new models; commitment to supportive structures and processes; elements to facilitate change; professional identity and capability development; and explicit education and learning. The clusters were grouped into three overarching domains, representing a cross-sectoral approach: humanity and partnership; career spanning education and training; and health systems, policy and management. Rating of statements allowed the generation of go-zone maps for further interrogation of the relative importance, feasibility, and achievement of each patient-centred care requirement and cluster.ConclusionThe study has empirically determined requirements for patient-centred care through the development of ROPCCS. The unique map emphasises collaborative responsibility of stakeholders to ensure that patient-centred care is comprehensively progressed. ROPCCS allows the complex requirements for patient-centred care to be understood, implemented, evaluated, measured, and shown to be occurring.

P2.07-001 Non-Negotiated Companion Influence on Information Exchange at Lung Cancer Clinic Consultations: Topic: Information for Patients

Effective information exchange is an asset to effective cancer care (Thorne et al, 2005). Lung cancer is a disease with many biomedical, physical and psychological consequences. This underlines the need for patient-centred care, tailoring communication to the specific needs, values and information preferences of each individual (Kissane et al, 2010). In the context of patient-centred care, communication with healthcare professionals can impact the effectiveness of the clinical encounter and influence clinical outcomes for patients with cancer (Aiello et al, 2008). However, the way in which healthcare professionals exchange information with patients can be affected by wide-ranging, external factors. The presence and involvement of a companion can increase the challenge and complexity of information exchange during cancer consultations (Albrecht et al, 2010). Companions add extraordinary dynamics to the clinical interaction and their potential to influence the exchange, either in a mediating or moderating manner warrants further investigation. As patients with lung cancer are commonly accompanied to the consultation by companions and as national and international policies advocate accompaniment, research in this area is germane. Qualitative, multiple case study design. Each case centred on a patient with lung cancer. It included health professionals patients consulted with and any accompanying companion(s). Seven cases were recruited, including 12 companions, and six professionals. Participants were recruited in 2010-2011 at outpatient clinics. Data were: consultation recordings, debrief interviews immediately post-consultation and later in-depth patient (possibly with companion) interviews. Analysis followed case study pattern matching and coding traditions. Each patient was accompanied by at least one companion. Three levels of negotiated companion accompaniment were identified: reciprocal/mutually agreed, partially negotiated/coerced and non-negotiated. Companions mediated and moderated information exchange across six major constructs. Mediating constructs were physical, emotional and informational, and moderating constructs were companion control, companion agenda and companion as expert. Companions with a non-negotiated presence were powerful and expert and moderated information exchange. Companion accompaniment to lung cancer clinics if often a negotiated process and one that patients may not have total autonomy over. Accompanying companions can influence the exchange of clinical information in both a mediating and moderating manner. The level of negotiated companion presence at lung cancer consultations has clinical implications that require policy, professional and patient attention. In order to facilitate the delivery of patient-centred care and communication healthcare professionals should be aware of and respect patient preference for companion accompaniment and involvement when policy initiatives often recommend companion presence during cancer consultations.