Patients with low activation level report limited possibilities to participate in cancer care

BackgroundCancer care trajectories are often complex, with potent multimodality treatments and multiple interactions with health care providers. Communication and coordination are challenging and the patients'' responsibilities to take on more active roles in their own care are increasing.ObjectiveThis study aimed to investigate associations between patient activation level and participation in cancer care, sociodemographic characteristics, clinical data, health‐related quality of life (HRQoL) and helpfulness of received information.MethodsIn this cross‐sectional population‐based study, patients completed questionnaires on patient activation, perceived participation, HRQoL, helpfulness of received information and sociodemographic characteristics. Responses to the patient activation measures (PAMs) were classified into four levels (higher levels indicating more activation). Data on age, sex and cancer diagnosis were collected from the Swedish Cancer Register.ResultsData from 682 patients were analysed. On comparing patients at PAM levels 1 and 4, the latter reported significantly higher possibilities to influence care decisions (46.6% vs. 20.8%) and to ask questions regarding treatment and care (93.4% vs. 68.4%). Patients at PAM level 4 reported wanting to influence decision‐making to a higher extent, compared with patients at other PAM levels, and reported clinically significantly higher HRQoL. No significant differences were found regarding sociodemographic characteristics.ConclusionWe found strong associations between perceived patient participation and activation levels, with limited possibility for participation among those with lower activation levels.Patient or Public ContributionDiscussions with patient representatives have raised the importance of participation. The preliminary findings were presented and discussed in a workshop with representatives from 21 cancer patient advocacy groups.     

The implementation cost of a safety‐net hospital program addressing social needs in Atlanta

ObjectiveTo describe the cost of integrating social needs activities into a health care program that works toward health equity by addressing socioeconomic barriers.Data Sources/Study SettingCosts for a heart failure health care program based in a safety‐net hospital were reported by program staff for the program year May 2018–April 2019. Additional data sources included hospital records, invoices, and staff survey.Study DesignWe conducted a retrospective, cross‐sectional, case study of a program that includes health education, outpatient care, financial counseling and free medication; transportation and home services for those most in need; and connections to other social services. Program costs were summarized overall and for mutually exclusive categories: health care program (fixed and variable) and social needs activities.Data CollectionProgram cost data were collected using a activity‐based, micro‐costing approach. In addition, we conducted a survey that was completed by key staff to understand time allocation.Principal FindingsProgram costs were approximately $1.33 million, and the annual per patient cost was $1455. Thirty percent of the program costs was for social needs activities: 18% for 30‐day supply of medications and addressing socioeconomic barriers to medication adherence, 18% for mobile health services (outpatient home visits), 53% for navigating services through a financial counselor and community health worker, and 12% for transportation to visits and addressing transportation barriers. Most of the program costs were for personnel: 92% of the health care program fixed, 95% of the health care program variable, and 78% of social needs activities.DiscussionHistorically, social and health care services are funded by different systems and have not been integrated. We estimate the cost of implementing social needs activities into a health care program. This work can inform implementation for hospitals attempting to address social determinants of health and social needs in their patient population.     

Preference‐based patient participation for most,if not all: A cross‐sectional study of patient participation amongst persons with end‐stage kidney disease

BackgroundPatient participation is considered central for good healthcare. Yet, the concept is not fully understood when it comes to patients'' experiences of participation in conjunction with their preferences, particularly in long‐term healthcare. The aim of this study was to investigate the extent and variation of preference‐based patient participation in patients with end‐stage kidney disease (ESKD).MethodsA cross‐sectional study was conducted with 346 patients in renal care. The main variables were patients'' preferences for and experiences of patient participation, determined using the Patient Preferences for Patient Participation tool, the 4Ps. Analyses identified the degree of match between preferences and experiences, that is, the preference‐based patient participation measure.ResultsOverall, 57%–84% of the patients reached a sufficient level of preference‐based patient participation on the items, while 2%–12% reached an insufficient level. A mismatch indicated either less or more participation than preferred; for example, 40% had less experience than preferred for taking part in planning, and 40% had more than preferred for managing treatment.ConclusionThis study shows that, although many patients reach a sufficient level of preference‐based patient participation, this is not the case for all patients and/or attributes. Further opportunities for a mutual understanding of patients'' preferences are needed for healthcare professionals to support person‐centred patient participation.Patient or Public ContributionThe 4Ps is manufactured in collaboration with people with experience of the patient role, and persons living with ESKD were engaged in identifying their preferences and experiences of participation in renal care.     

Opt‐in or opt‐out health‐care communication? A cross‐sectional study

BackgroundPatients need medication and medical condition‐related information to better self‐manage their health. Health‐care professionals (HCPs) should be able to actively provide information outside of one‐on‐one consultations; however, patient consent may be required.ObjectiveTo investigate the Australian public''s preferences, and factors that may influence their preferences, towards an opt‐in versus an opt‐out approach to health communication.DesignA cross‐sectional study using a structured questionnaire administered via Computer‐Assisted Telephone Interviewing.Setting and participantsParticipants across Australia who were adults, English‐speaking and had a long‐term medical condition.Main outcome measuresPreferences for opt‐in vs opt‐out approach to receiving follow‐up tailored information.ResultsA total of 8683 calls were made to achieve the required sample size of 589 completed surveys. Many (346/589; 58.7%) indicated that they were interested in receiving tailored, ongoing follow‐up information from their HCP. Nearly half (n = 281; 47.7%) preferred an opt‐in service and 293/589 (49.7%) an opt‐out service for receiving follow‐up information. Reasons for preferring an opt‐in service were being in control of the information received (n = 254); able to make a decision that is best for them (n = 245); opt‐in service would save time for HCPs (n = 217); they may not want or need the information (n = 240). Many (n = 255) felt that an opt‐out service should be part of the normal duty of care of their HCP and believed (n = 267) that this approach would ensure that everyone has access to information.ConclusionsRespondents were interested in receiving tailored information outside of consultation times. However, preferences for an opt‐in or opt‐out approach were divided.     

Shared decision making in surgery: A scoping review of the literature

BackgroundShared decision making (SDM) has been increasingly implemented to improve health‐care outcomes. Despite the mixed efficacy of SDM to provide better patient‐guided care, its use in surgery has not been studied. The aim of this study was to systematically review SDM application in surgery.DesignThe search strategy, developed with a medical librarian, included nine databases from inception until June 2019. After a 2‐person title and abstract screen, full‐text publications were analysed. Data collected included author, year, surgical discipline, location, study duration, type of decision aid, survey methodology and variable outcomes. Quantitative and qualitative cross‐sectional studies, as well as RCTs, were included.ResultsA total of 6060 studies were retrieved. A total of 148 were included in the final review. The majority of the studies were in plastic surgery, followed by general surgery and orthopaedics. The use of SDM decreased surgical intervention rate (12 of 22), decisional conflict (25 of 29), and decisional regret (5 of 5), and increased decisional satisfaction (17 of 21), knowledge (33 of 35), SDM preference (13 of 16), and physician trust (4 of 6). Time increase per patient encounter was inconclusive. Cross‐sectional studies showed that patients prefer shared treatment and surgical treatment varied less. The results of SDM per type of decision aid vary in terms of their outcome.ConclusionSDM in surgery decreases decisional conflict, anxiety and surgical intervention rates, while increasing knowledge retained decisional satisfaction, quality and physician trust. Surgical patients also appear to prefer SDM paradigms. SDM appears beneficial in surgery and therefore worth promoting and expanding in use.     

A national research centre for the evaluation and implementation of person‐centred care: Content from the first interventional studies

BackgroundPerson‐centred care (PCC) has been suggested as a potential means to improve the care of patients with chronic and long‐term disorders. In this regard, a model for PCC was developed by the University of Gothenburg Centre for Person‐Centred Care (GPCC).ObjectiveThe present study aimed to explore the theoretical frameworks, designs, contexts and intervention characteristics in the first 27 interventional studies conducted based on the ethics for person‐centredness provided by the GPCC.DesignCross‐sectional study.Setting and participantsA questionnaire to the principal investigators of the 27 intervention studies financed by the GPCC and conducted between 2010 and 2016.Main outcome measuresTheoretical frameworks, contexts of studies, person‐centred ethic, and outcome measures.ResultsMost of the interventions were based on the same ethical assumptions for person‐centredness but theories and models in applying the interventions differed. All studies were controlled; 12 randomized and 15 quasi‐experimental. Hospital in‐ and outpatient and primary care settings were represented and the outcome measures were related to the specific theories used. A complexity in designing, introducing and evaluating PCC interventions was evident.ConclusionThe frameworks, designs and interventions in the studies were in line with the established ethical basis of PCC, whereas outcome measures varied widely. Consensus discussions among researchers in the field are needed to make comparisons between studies feasible.Patient or public contributionsPatients or the public made no direct contributions, although most of the studied projects included such initiatives.     

Patients at the centre after a health care incident: A scoping review of hospital strategies targeting communication and nonmaterial restoration

ObjectiveThis study aimed to provide an overview of the strategies adopted by hospitals that target effective communication and nonmaterial restoration (i.e., without a financial or material focus) after health care incidents, and to formulate elements in hospital strategies that patients consider essential by analysing how patients have evaluated these strategies.BackgroundIn the aftermath of a health care incident, hospitals are tasked with responding to the patients'' material and nonmaterial needs, mainly restoration and communication. Currently, an overview of these strategies is lacking. In particular, a gap exists concerning how patients evaluate these strategies.Search Strategy and Inclusion CriteriaTo identify studies in this scoping review, and following the methodological framework set out by Arksey and O''Malley, seven subject‐relevant electronic databases were used (PubMed, Medline, Embase, CINAHL, PsycARTICLES, PsycINFO and Psychology & Behavioral Sciences Collection). Reference lists of included studies were also checked for relevant studies. Studies were included if published in English, after 2000 and as peer‐reviewed articles.Main Results and SynthesisThe search yielded 13,989 hits. The review has a final inclusion of 16 studies. The inclusion led to an analysis of five different hospital strategies: open disclosure processes, communication‐and‐resolution programmes, complaints procedures, patients‐as‐partners in learning from health care incidents and subsequent disclosure, and mediation. The analysis showed three main domains that patients considered essential: interpersonal communication, organisation around disclosure and support, and desired outcomes.Patient ContributionThis scoping review specifically takes the patient perspective in its methodological design and analysis. Studies were included if they contained an evaluation by patients, and the included studies were analysed on the essential elements for patients.     

‘Triadic’ shared decision making in mental health: Experiences and expectations of service users,caregivers and clinicians in Germany

BackgroundShared decision making (SDM) in mental health may contribute to greater patient satisfaction and is sometimes associated with better health outcomes. Here, SDM should not only involve service users and clinicians but also involve the service users'' caregivers.AimThis study aimed to achieve better insight into the current SDM patterns of triads of service users, caregivers and clinicians in inpatient mental health care and the three parties'' expectations towards the prospects of triadic SDM.DesignThe current research uses data from a representative cross‐sectional study on caregivers in psychiatric inpatient treatment. We analysed data on n = 94 triads of service users, their caregivers and their clinicians.ResultsAll three parties acknowledge caregivers to be of great support to monitor the progress with mental disease. The caregiver''s role during consultations is most often described as being an expert, receiving or providing information and supporting service users. However, caregivers at times try to seek support for themselves during caregiver‐clinician interaction, or their behaviour was described as unhelpful. The potential prospects of caregiver involvement are clearly acknowledged despite the low implementation of caregiver involvement in this sample (only in one‐third of the cases).ConclusionTriadic SDM rarely takes place in routine inpatient care. First, there should be a focus on interventions aiming at inviting caregivers to consultations. Only in the second step should a better conceptualisation of triadic SDM be undertaken.Public ContributionEarly results were discussed with a local peer support group for caregivers of individuals living with mental illness.     

Dissonance in the discourse of the duration of diabetes: A mixed methods study of patient perceptions and clinical practice

BackgroundRemission of diabetes can be rewarding for patients and physicians, but there is limited study of how patients perceive the timeline of a disease along the continuum of glycaemic control.ObjectiveTo explore how patients perceive the timeline of diabetes along the continuum of glycaemic control and their goals of care and to identify whether family physicians communicate the principles of regression and remission of diabetes.DesignMixed methods approach of qualitative semi‐structured interviews with purposive sampling followed by cross‐sectional survey of physicians.ParticipantsThirty‐three patients living with prediabetes (preDM) or type 2 diabetes mellitus (T2DM) at medical centres in Georgia and Nevada; and 387 family physicians providing primary care within the same health system.ResultsPatients described two timelines of diabetes: as a lifelong condition or as a condition that can be cured. Patients who perceived a lifelong condition described five treatment goals: reducing glucose‐related laboratory values, losing weight, reducing medication, preventing treatment intensification and avoiding complications. For patients who perceived diabetes as a disease with an end, the goal of care was to achieve normoglycaemia. In response to patient vignettes that described potential cases of remission and regression, 38.2% of physician respondents would still communicate that a patient has preDM and 94.6% would tell the patient that he still had diabetes.ConclusionsMost physicians here exhibited reluctance to communicate remission or regression in patient care. Yet, patients describe two different potential timelines, including a subset who expect their diabetes can be ‘cured’. Physicians should incorporate shared decision making to create a shared mental model of diabetes and its potential outcomes with patients.Patient or Public ContributionIn this mixed methods study, as patients participated in the qualitative phase of this study, we asked patients to tell us what additional questions we should ask in subsequent interviews. Data from this qualitative phase informed the design and interpretation of the quantitative phase with physician participants.     

Health‐care professionals’ assessment of a person‐centred intervention to empower self‐management and health across chronic illness: Qualitative findings from a process evaluation study

BackgroundPerson‐centred care (PCC) empowers patients to manage their chronic illness and promote their health in accordance with their own beliefs, values and preferences. Drawing on health‐care professional''s (HCP’s) experiences implementing an empowerment‐focused, person‐centred intervention called the Bodyknowledging Program (BKP), we undertook a process evaluation that aimed to assess the impact on patient health and well‐being.MethodsWe used individual in‐depth interviews and semi‐structured focus groups comprising n = 8 interprofessional HCP who facilitated intervention sessions with n = 58 patients situated in Norwegian specialist care sites. Content analysis was used to analyse the data and summarize major themes.ResultsHealth‐care professional interviews revealed four main ways in which the intervention operated in support of health‐related patient outcomes: (i) addressing the whole person; (ii) hope and affirmation; (iii) expanding recovery; and (iv) social support and revitalized relationships. The intervention provided new tools for patients to understand the social, emotional and physical impact of their illness. Health‐care professional reported new insights to facilitate patient engagement and to promote patients’ health.ConclusionsThe Bodyknowledging Program facilitated patient engagement through the promotion of patient‐centred care while developing the patients’ ability to exploit their own resources for effectively managing their health within illness. The process evaluation supported the underlying theoretical basis of the intervention and was suggestive of its potential transferability elsewhere.     

Psychometric characteristics of the health care empowerment questionnaire in a sample of patients with arthritis and rheumatic conditions

BackgroundPatient empowerment can improve health‐related outcomes and is important in chronic conditions, such as arthritis. This study aimed to validate the Health Care Empowerment Questionnaire (HCEQ), a patient‐reported experience measure of empowerment, for use with patients with arthritis and other rheumatic diseases.MethodsThe HCEQ measures Patient Information Seeking (or Involvement in Decisions) and Healthcare Interaction Results (or Involvement in Interactions) and asks respondents to answer questions in two ways: whether they feel something happened and its importance to them. Face validity was assessed through qualitative data (n = 8, nominal group technique; n = 55, focus groups). Measure structure was assessed through confirmatory factor analysis (CFA); internal consistency was also assessed (n = 9226). Test‐retest reliability was assessed with sub‐sample of participants (n = 182).ResultsWe found adequate face validity of the HCEQ for patients with arthritis. The CFA indicated good fit to the data for the two‐factor structure of the HCEQ (RMSEA = 0.075; CFI = 0.987; TLI = 0.978; SRMR = 0.026). Internal consistency was strong (α=0.94 for both subscales). Test‐retest reliability was moderate for Patient Information Seeking (ICC=0.67) and good for Healthcare Interaction Results (ICC=0.77).ConclusionsThe HCEQ, with modifications, demonstrated promising psychometric properties within this sample, laying the foundation for further assessment. This work supports the HCEQ as an appropriate instrument for examining experiences with and perceived importance of empowerment in individuals with arthritis and other rheumatic conditions.Patient ContributionPatients contributed to the assessment of face validity. As a measure of patient empowerment, the HCEQ’s use can enable further participation of patients in health care.     

Ensuring patient and public involvement in the transition to AI‐assisted mental health care: A systematic scoping review and agenda for design justice

BackgroundMachine‐learning algorithms and big data analytics, popularly known as ‘artificial intelligence’ (AI), are being developed and taken up globally. Patient and public involvement (PPI) in the transition to AI‐assisted health care is essential for design justice based on diverse patient needs.ObjectiveTo inform the future development of PPI in AI‐assisted health care by exploring public engagement in the conceptualization, design, development, testing, implementation, use and evaluation of AI technologies for mental health.MethodsSystematic scoping review drawing on design justice principles, and (i) structured searches of Web of Science (all databases) and Ovid (MEDLINE, PsycINFO, Global Health and Embase); (ii) handsearching (reference and citation tracking); (iii) grey literature; and (iv) inductive thematic analysis, tested at a workshop with health researchers.ResultsThe review identified 144 articles that met inclusion criteria. Three main themes reflect the challenges and opportunities associated with PPI in AI‐assisted mental health care: (a) applications of AI technologies in mental health care; (b) ethics of public engagement in AI‐assisted care; and (c) public engagement in the planning, development, implementation, evaluation and diffusion of AI technologies.ConclusionThe new data‐rich health landscape creates multiple ethical issues and opportunities for the development of PPI in relation to AI technologies. Further research is needed to understand effective modes of public engagement in the context of AI technologies, to examine pressing ethical and safety issues and to develop new methods of PPI at every stage, from concept design to the final review of technology in practice. Principles of design justice can guide this agenda.     

Patient experiences of the urgent cancer referral pathway—Can the NHS do better? Semi‐structured interviews with patients with upper gastrointestinal cancer

BackgroundTimeliness is viewed as a key feature of health‐care quality. Internationally, this is challenging. In England, cancer waiting time targets are currently not being met. For example, between 2015 and 2018 only 71% of patients with upper gastrointestinal (UGI) cancer started treatment within the recommended 62 days of referral.ObjectiveWe explored patients’ experiences to identify areas for service improvement.DesignSemi‐structured interviews were conducted.Setting and participantsTwenty patients who were referred through the urgent (two‐week) GP referral route and were within six months of receiving first treatment were recruited.Data analysisData from the interviews were analysed thematically.ResultsFour themes were developed: organization of care; diagnosis; support; and views and expectations of the NHS. Patients described cross‐cutting issues such as complex and varied pathways and uncertainty about what would happen next. They felt daunted by the intensity and speed of investigations. They were presented with a recommended course of action rather than options and had little involvement in decision making. They were grateful for care, reluctant to complain and resigned to the status quo.Discussion and conclusionsIn order to meet patient needs, the NHS needs to improve communication and streamline pathways. Future cancer pathways also need to be designed to support shared decision making, be truly person‐centred and informed by patient experience.     

Multidimensional structural racism predicts birth outcomes for Black and White Minnesotans

ObjectiveThe objective of this study is to determine the linkage between multidimensional structural racism typologies and preterm birth (PTB), low birthweight (LBW), and small‐for‐gestational‐age (SGA) birth among infants of White, US‐born Black, and foreign‐born Black pregnant people in Minnesota.Data SourcesThe measures of structural racism were based on the 2017 American Community Survey 5‐year estimates and the 2017 jail incarceration data from the Vera Institute of Justice. Birth outcomes of infants born in 2018 were based on birth records from the Minnesota Department of Health.Study DesignWe conducted a latent class analysis to identify multidimensional structural racism typologies in 2017 and related these typologies to birth outcomes of pregnant people who gave birth in Minnesota in 2018 using Vermunt''s 3‐step approach. Racial group‐specific age‐adjusted risks of PTB, LBW, and SGA by structural racism typologies were estimated.Data CollectionStudy data were from public sources.Principal FindingsOur analysis identified three multidimensional structural racism typologies in Minnesota in 2017. These typologies can have high structural racism in some dimensions but low in others. The interactive patterns among various dimensions cannot simply be classified as “high” (i.e., high structural racism in all dimensions), “medium,” or “low.” The risks of PTB, LBW, and SGA for US‐born Black pregnant Minnesotans were always higher than for their White counterparts regardless of the typologies in which they lived during pregnancy. Furthermore, these excess risks among US‐born Black pregnant people did not vary significantly across the typologies. We did not find clear patterns when comparing the predicted risks for infants of US‐ and foreign‐born Black pregnant people.ConclusionMultidimensional structural racism increases the risks of adverse birth outcomes for US‐born Black Minnesotans. Policy interventions to dismantle structural racism and eliminate birth inequities must be multi‐sectoral as changes in one or a few dimensions, but not all, will unlikely reduce birth inequities.     

Facilitating personal development for public involvement in health‐care education and research: A co‐produced pilot study in one UK higher education institute

BackgroundPublic involvement in the education of students enrolled on higher education programmes has gained impetus. For students enrolled on professional health‐care programmes and health‐related modules in the UK, there is also a requirement by professional bodies to include “service user” involvement in preparation for entry to a professional health‐care register and continuing professional development. Actively involving patients and members of the public in research is also a requirement by many research funders. In this article, the term Patient and Public Involvement (PPI) will be used throughout to include lay members, volunteers, user and carers.ObjectivesA unique pilot study was introduced across a health faculty to integrate PPI in a deliberate way. It aimed to provide an educational, focused programme of events that was meaningful to develop and inform peoples’ knowledge, skills and confidence for their involvement in the health faculty.DesignPPI members volunteered to sit on a steering group to determine the educational journey; the outcomes of three focus groups with PPI members (N = 32) and academics informed the programme content which included a range of workshops covering the exploration of public roles and barriers to involvement, introduction to research and interviewing skills.ResultsThe workshops were well attended, and outcomes indicated the importance of co‐production when designing, delivering and evaluating programmes.DiscussionCo‐production underpinned this pilot study, resulting in a programme which was meaningfully received by public contributors.RecommendationsCo‐production was seen as integral to this research to ensure that outcomes were indeed “fit for purpose”.     

Practice‐site‐level measures of primary care comprehensiveness and their associations with patient outcomes

ObjectivesTo develop two practice‐site‐level measures of comprehensiveness and examine their associations with patient outcomes, and how their performance differs from physician‐level measures.Data SourcesMedicare fee‐for‐service claims.Study DesignWe calculated practice‐site‐level comprehensiveness measures (new problem management and involvement in patient conditions) across 5286 primary care physicians (PCPs) at 1339 practices in the Comprehensive Primary Care initiative evaluation in 2013. We assessed their associations with practices’ attributed beneficiaries’ 2014 total Medicare expenditures, hospitalization rates, ED visit rates. We also examined variation in PCPs’ comprehensiveness across PCPs within practices versus between primary care practices. Finally, we compared associations of practice‐site and PCP‐level measures with outcomes.Principal FindingsThe measures had good variation across primary care practices, strong validity, and high reliability. Receiving primary care from a practice at the 75th versus 25th percentile on the involvement in patient conditions measure was associated with $21.93 (2.8%) lower total Medicare expenditures per beneficiary per month (P < .01). Receiving primary care from a practice at the 75th versus 25th percentile on the new problem management measure was associated with $14.77 (1.9%) lower total Medicare expenditures per beneficiary per month (P < .05); 8.84 (3.0%) fewer hospitalizations (P < .001), and 21.27 (3.1%) fewer ED visits per thousand beneficiaries per year (P < .01). PCP comprehensiveness varied more within than between practices.ConclusionsMore comprehensive primary care practices had lower Medicare FFS expenditures, hospitalization, and ED visit rates. Both PCP and practice‐site level comprehensiveness measures had strong construct and predictive validity; PCP‐level measures were more precise.