Positive Deviance Theory: Leveraging Compliments Data to Guide Strategic Planning for Patient Experience Improvement in a Large Rural Health Care System.

BACKGROUND: Patient-centered care (PCC) has been called for as a solution to improving care quality and patient outcomes. Patient experience, termed care experience, is a measurable aspect of PCC and aligns with coproduction. Identifying patterns of positivity and high performers is a Positive Deviance approach that can inform strategic improvement of the care experience. OBJECTIVE: To identify the characteristics of positive deviances from voluntary, unsolicited compliments from patients and family members about their care experiences. METHODS: The authors conducted a mixed-method analysis, including content and a thematic analysis of unsolicited comments from patients and families, submitted between January 2021 and January 2022. After removing duplicates and miscategorized comments, 213 compliments were included in the analysis using a single, blinded inductive coding to synthesize thematic statements. RESULTS: The main campus received the most compliments by location (89%); the most widely used patient sentiment was thankful (36.8%). Compassionate (26.8%), together with six others: competent (11.6%), communication (10.6%), cared for (8.5%), care team (8.0%), and supportive (8.0%), made up approximately 80% of drivers of care quality. Physicians (37.3%) and nurses (34.2%) were the most complimented personnel, although surgery (17.0%) were the most complimented services team. Similar characteristics were reported for exemplary individuals and their associated care teams. CONCLUSION: The results align with previously reported work by the Beryl Institute and CMS 5-star rating on key drivers of patient experience. This approach provides a method by which exemplars can be identified within health systems, and that information is used to guide improvement and organizational planning.

Practical Use of Self-Adjusted Nitrous Oxide During Transrectal Prostate Biopsy: A Double-Blind Randomized Controlled Trial.

PURPOSE: Transrectal prostate biopsy is a common ambulatory procedure that can result in pain and anxiety for some men. Low-dose, adjustable nitrous oxide is increasingly being used to improve experience of care for patients undergoing painful procedures. This study seeks to evaluate the efficacy and safety of low-dose (<45%) nitrous oxide, which has not been previously established for transrectal prostate biopsies. MATERIALS AND METHODS: A single-institution, prospective, double-blind, randomized, controlled trial was conducted on patients undergoing transrectal prostate biopsies. Patients were randomized to receive either self-adjusted nitrous oxide or oxygen, in addition to routine periprostatic bupivacaine block. Nitrous oxide at levels between 20% and 45% were adjusted to patients' desired effect. Patients completed a visual analog scale for anxiety, State Trait Anxiety Inventory, and a visual analog scale for pain immediately before and after biopsy. The blinded operating urologist evaluated ease of procedure. Periprocedural vitals and complications were assessed. Patients were allowed to drive home independently. RESULTS: A total of 133 patients received either nitrous oxide (66) or oxygen (67). There was no statistically significant difference in the primary anxiety end point of State Trait Anxiety Inventory or the visual analog scale for anxiety scores between the nitrous oxide and oxygen groups. However, patients in the nitrous oxide group reported significantly lower visual analog scale for pain scores compared to the oxygen group (P = .026). The operating urologists' rating of tolerance of the procedure was better in the nitrous oxide group (P = .03). There were no differences in biopsy performance time. Complications were similarly low between the 2 groups. CONCLUSIONS: Patient-adjusted nitrous oxide at levels of 20% to 45% is a safe adjunct during transrectal prostate biopsy. Although there was not an observed difference in the primary end point of anxiety, nitrous oxide was associated with lower patient-reported pain scores.

Beyond Medical Care: How Different National Models of Care Impact the Experience of Adolescent and Young Adult Cancer Patients.

Patient experience is positively associated with clinical effectiveness, quality care, and patient safety. This study examines the experience of care of adolescents and young adult (AYA) cancer patients from Australia and the United States, allowing a comparison of patient experiences in the context of different national models of cancer care delivery. Participants (n = 190) were aged 15-29 years and received cancer treatment from 2014 to 2019. Australians (n = 118) were recruited nationally by health care professionals. U.S. participants (n = 72) were recruited nationally via social media. The survey included demographic and disease variables, and questions regarding medical treatment, information and support provision, care coordination, and satisfaction across the treatment pathway. Sensitivity analyses examined the possible contribution of age and gender. Most patients from both countries were satisfied or very satisfied with their medical treatment (chemotherapy, radiotherapy, and surgery). There were significant differences between countries in the provision of fertility preservation services, age-appropriate communication, and psychosocial support. Our findings suggest when a national system of oversight with both state and federal funding is implemented, as is the case in Australia but not in the United States, significantly more AYAs with cancer receive age-appropriate information and support services, and improved access to specialist services such as fertility care. A national approach with government funding and centralized accountability appears to be associated with substantial benefits for the well-being of AYAs undergoing cancer treatment.

The impact of smoking status on anticipated stigma and experience of care among smokers and ex-smokers with chronic illness in general practice.

OBJECTIVES: To compare self-reported levels of 'anticipated' stigma and experience of care in general practice between current and ex-smokers living with COPD, other chronic illnesses, or those with no chronic conditions. METHODS: Participants completed an online survey, advertised through social media, about their experience of care from general practitioners (GPs) in the past 12 months. Respondents self-reported doctor-diagnosed chronic illnesses. Experience of care and anticipated stigma was assessed using validated questions. Multi-nominal regressions were used to determine independent effect of smoking status on anticipated stigma and other indicators of patient experience in primary care. RESULTS: Patients with COPD (n = 161) reported significantly higher anticipated stigma scores compared to those with other chronic conditions (n = 225) and this was strongly related to delayed or avoidance in seeking help from a GP when needed. This relationship remained irrespective of current smoking status. There was no difference between groups for relational components of experience of care. DISCUSSION: Primary care patients living with COPD reported worse experience of care across several domains and were more likely to anticipate experiencing stigma in the GP setting irrespective of their current smoking status compared to those with other chronic illnesses or no chronic illnesses.

Waiting for lumbar spinal stenosis surgery: suffering and a possibility to discover coping abilities.

OBJECTIVE: The objective of this study was to describe aspects of suffering related to being a person with LSS and how suffering is managed before LSS surgery. METHODS/DESIGN/SETTING: A Swedish county hospital. Interviews with 18 consecutive patients on the waiting list for LSS surgery. The themes that emerged from content analysis were further interpreted using Antonovsky salutogenic model as a sensitizing concept. RESULTS: The suffering from LSS before surgery included the main theme of experiencing an impaired physical and social life and struggling to be believed and taken seriously. This had coping strategies to manage symptoms before surgery: a good physician-patient relationship alleviates the burden of long waiting times; ways to manage pain and disability; ambiguous expectations and hope for recovery, and; ways to handle concerns before surgery). CONCLUSION: Being a person with LSS includes suffering and a possibility to discover coping abilities or having support structures for doing so. Our study emphasizes the importance of a supportive dialogue, where physicians and patients make the suffering from LSS and care before LSS surgery more comprehensible and manageable.

Understanding motivation for Australian adolescents and young adults with cystic fibrosis: Modifiable factors to support self-management.

Cystic fibrosis (CF) is Australia's most common life limiting genetic condition, characterised by declining health and quality of life (QoL) over time. Despite improvements in treatment, there remains no cure. Adolescents and young adults (AYAs) with CF experience broad impacts to psychosocial functioning and QoL, as well as major transitions in care, all at a time of significant developmental change. The importance of developmentally tailored approaches to youth health care and self-management for young people with CF are well understood. However, to date, models of youth specific self-management have been lacking and motivation for young people with CF has not been well explored. This qualitative study, based on a social constructionist epistemological framework, addresses this gap. A total of 21 AYAs aged 15-30 years were recruited through one paediatric and one adult Australian CF centre. Demographic, clinical and distress data were captured to describe health complexity. Semi-structured interviews were audio-recorded, transcribed and analysed using thematic analysis. Participants were representative of Australian AYAs with CF by demography and clinical status. Alarmingly, over a third reported clinically significant distress. Two themes emerged. The first Identified impacts to motivation and self-management resulting from the challenges of managing CF, life and care. These included time and competing priorities, changing health statis, mental health, social factors, unmet needs and health system complexity. The second identified factors that support motivation including: achievement, meaning and purpose; consequence avoidance; and accountability. These results illustrate the importance of AYA specific, theoretically founded, holistic self-management models which extend beyond current theoretical approaches that aim to understand behaviour change or address barriers, in isolation from motivation. Improved approaches to care based on these findings are essential to foster positive behavioural change, support self-management and foster the best health outcomes for young people living with CF.

Patient and family experience of telehealth care delivery as part of the CF chronic care model early in the COVID-19 pandemic.

BACKGROUND: During the COVID-19 pandemic, CF centers shifted to a telehealth delivery model. Our study aimed to determine how people with CF (PwCF) and their families experienced telehealth and assessed its quality and acceptability for future CF care. METHODS: The CF Patient and Family State of Care Survey (PFSoC) was fielded from August 31-October 30, 2020. The PFSoC explored themes of overall telehealth quality, ease of use, desirability, and preference for a future mix of in-person and telehealth care. Demographic covariates considered included: gender, age, CFTR modulator status, and region of residence. RESULTS: 424 PwCF and parents of PwCF responded (47% parents). Most (81%) reported a telehealth visit which included a MD/APP and nurse team members. 91% found telehealth easy to use, and 66% reported similar/higher quality than in-person care. One-third (34%) reported the highest desire for future telehealth care, with 45% (n =212) desiring 50% or more of visits conducted via telehealth. Adults were more likely than parents to report highest desire for future telehealth (64% vs. 36%). Respondents who perceived telehealth as similar/higher quality were more likely to desire future telehealth compared to those who perceived telehealth as lower quality (96% vs. 50%). Mixed methods analysis revealed themes affecting perceptions of telehealth. CONCLUSIONS: PwCF desire for future telehealth was influenced by perception of quality and age. Several themes emerged that need to be explored as telehealth is adapted into the CF chronic care model, especially when thinking about integration into pediatric care.

Third Things as Inspiration and Artifact: A Multi-Stakeholder Qualitative Approach to Understand Patient and Family Emotions after Harmful Events.

Patient and family emotional harm after medical errors may be profound. At an Agency for Healthcare Research and Quality (AHRQ) conference to establish a research agenda on this topic, the authors used visual images as a gateway to personal reflections among diverse stakeholders. Themes identified included chaos and turmoil, profound isolation, organizational denial, moral injury and betrayal, negative effects on families and communities, importance of relational skills, and healing effects of human connection. The exercise invited storytelling, enabled psychological safety, and fostered further collaborative discussion. The authors discuss implications for quality/safety, educational innovation, and qualitative research.

Patients and families experience with pharmacist care at cystic fibrosis foundation accredited clinics.

Cystic fibrosis (CF) is a complex genetic, multiorgan disease. The CF Foundation (CFF) recommends a multidisciplinary team (physician, nurse, respiratory therapist, dietitian, physical therapist, social worker, mental health coordinator, clinic coordinator, and pharmacist) to work with patients and families. The objective of our study was to describe the impact of a pharmacist involved in the care of patients and families from their perspective. The CF Patient and Family Experience of Care (PFEC) is a voluntary, 50-question telephonic or internet-based survey designed to continuously collect information from patients and their families regarding their care experience. From August of 2017 through February of 2018, five questions were added to the internet survey to assess the impact of the pharmacist on the care experience. From the 666 respondents, 54% reported that a pharmacist was involved in their CF care. At two CF clinics designated as "full access" to a pharmacist, respondents reported a higher percentage of the CF-team discussed medications compared to those from three clinics designated as "limited access" to the pharmacist (95% vs 67%). Respondents in clinics with "full access" to a pharmacist were significantly more likely to get their medications refilled on time (78% vs 63%) and reported using fewer pharmacies to fill their medications. Pharmacist involvement in CF care may improve patient's access to medication and the ability to sustain use.

Patient Engagement in Otolaryngology.

Patient engagement, which involves incorporating the patient and family as partners in their care, is a growing focus in otolaryngology and surgery. Attention to patient and family centeredness, shared decision making, and patient experience together improves the overall tenor of patient engagement. Patient engagement promotes safety through improving quality of electronic health record data, error detection, and treatment decisions and adherence. In this article, we review specific areas of importance for patient engagement in otolaryngology as well as areas needing more research and development.

Evaluating the experiences and support needs of people living with chronic cancer: development and initial validation of the Chronic Cancer Experiences Questionnaire (CCEQ).

BACKGROUND: Many advanced cancers are managed as chronic diseases, yet there are currently no international guidelines for the support of patients living with chronic cancer. It is important to understand whether care and service arrangements meet the needs of this rapidly growing patient group. This study aimed to develop and validate a questionnaire to capture patients' experiences of living with chronic cancer and their views of clinical and support services. METHODS: The research was carried out between 1 July 2010 and 21 February 2013. A conceptual framework and initial item bank were derived from prior interviews with 56 patients with chronic cancer. Items were reviewed by 4 oncologists and 1 clinical nurse specialist and during 2 focus groups with 9 patients. Pilot questionnaires were completed by 416 patients across 5 cancer units. Item selection and scale reliability was explored using descriptive data, exploratory factor analysis, internal consistency analyses, multitrait scaling analyses and known-groups comparisons. RESULTS: The final Chronic Cancer Experiences Questionnaire (CCEQ) includes 75 items. 62 items contribute to 14 subscales with internal consistency between α 0·68-0·88 and minimal scaling errors. Known-groups comparisons confirmed subscale utility in distinguishing between patient groups. Subscales were labelled: managing appointments, coordination of care, general practitioner involvement, clinical trials, information and questions, making treatment decisions, symptom non-reporting, key worker, limitations, sustaining normality, financial advice, worries and anxieties, sharing feelings with others, and accessing support. 13 items assessing symptom experiences were retained as single items. CONCLUSIONS: The CCEQ has the potential to be used as a clinical instrument to assess patient experiences of chronic cancer or to screen for patient needs. It may also be used as an outcome measure for evaluating programmes and models of care and may identify areas for service development that could ultimately improve the care and support received by patients with chronic cancer.

On the road and away from home: a systematic review of the travel experiences of cancer patients and their families.

PURPOSE: Traveling for cancer care is difficult as patients might be suffering from the side effects of treatment, need to cover additional costs, and face disruption of daily life. The aim of this review was to synthesize the evidence on travel needs and experiences during cancer treatment from the point of view of patients and their families. METHODS: This is a systematic review of the literature. The PRISMA statement was used to guide the reporting of the methods and findings. We searched for peer-reviewed articles in MEDLINE, CINAHL PLUS, and Web of Science and selected articles based on the following criteria: focused on patients and their families; presented findings from empirical studies; and examined travel and transport experiences for cancer screening, treatment, and related care. The MMAT was used to assess the quality of the studies. RESULTS: A total of 16 articles were included in the review. Most of the studies used a qualitative design, were carried out in high-income countries and were conducted more than 10 years ago. Several problems were reported regarding travel and relocation: social and physical demands of transport, travel, and relocation; life disruption and loss of daily routines; financial impact; and anxieties and support needs when returning home. CONCLUSIONS: Patients and carers consistently reported lack of support when traveling, relocating, and returning home. Future research needs to explore patient experiences under current treatment protocols and healthcare delivery models, in a wider range of geographical contexts, and different stages of the patient pathway.

Case-Mix Adjustment of the Bereaved Family Survey.

Surveys of bereaved family members are increasingly being used to evaluate end-of-life (EOL) care and to measure organizational performance in EOL care quality. The Bereaved Family Survey (BFS) is used to monitor EOL care quality and benchmark performance in the Veterans Affairs (VA) health-care system. The objective of this study was to develop a case-mix adjustment model for the BFS and to examine changes in facility-level scores following adjustment, in order to provide fair comparisons across facilities. We conducted a cross-sectional secondary analysis of medical record and survey data from veterans and their family members across 146 VA medical centers. Following adjustment using model-based propensity weighting, the mean change in the BFS-Performance Measure score across facilities was -0.6 with a range of -2.6 to 0.6. Fifty-five (38%) facilities changed within ±0.5 percentage points of their unadjusted score. On average, facilities that benefited most from adjustment cared for patients with greater comorbidity burden and were located in urban areas in the Northwest and Midwestern regions of the country. Case-mix adjustment results in minor changes to facility-level BFS scores but allows for fairer comparisons of EOL care quality. Case-mix adjustment of the BFS positions this National Quality Forum-endorsed measure for use in public reporting and internal quality dashboards for VA leadership and may inform the development and refinement of case-mix adjustment models for other surveys of bereaved family members.

Health care experiences among women diagnosed with gestational breast cancer.

Gestational breast cancer (GBC) presents many challenges for women and the clinicians who care for them. The aim of this study was to explore the health care experiences of women diagnosed with GBC to inform and improve clinical care of women in this predicament. Semi-structured interviews were conducted with 17 women who had been diagnosed with GBC in the previous 5 years. The overarching themes for perceived quality of care were "communication" and "comprehensive care." "Communication" had two sub themes: "interdisciplinary communication" (the way health professionals from different disciplines communicated with each other about the management of the woman's care) and "patient communication" (how they communicated this to the woman). The "comprehensive care" theme incorporated three sub themes: "the spirit" (psychological care); "the mind" (information provision); and "the body" (management of treatment side effects). Women's own accounts of positive and negative experiences of GBC care provide unique and specific insights which improve understanding of their concerns and needs. The findings can inform advances in quality and efficacy of clinical care; offer guidance for obstetricians, oncologists and allied health professionals about the needs of women diagnosed with GBC and how care can be optimised; and inform the development of resources to assist women and their families.

[Cancer diagnosis disclosure and supportive care seen from the patient side. A cross sectional multicentre survey]. / Étude transversale, multicentrique, sur le ressenti des patients concernant le dispositif d'annonce du diagnostic de cancer.

The objective of this study was to describe patients' experience during cancer disclosure and initial carers' support phase, in three healthcare facilities in Haute-Savoie District, France. METHODOLOGY: We conducted a multicentric, cross-sectional telephone survey. Patients registered on the multidisciplinary cancer consultation platform lists were randomised. Practitioners validated the inclusion criteria of their patients, i.e. age over 18, patient fully informed of his/her diagnosis and able to answer a telephone interview. RESULTS: Two hundred thirty-six patients have been included. Outcome indicators reported as satisfactory were: the general setting of the disclosure consultation, the patient-doctor relationship, the coordination between the different carers and the patient carer relationship. The overall duration of the medical disclosure consultation and the time dedicated to explain the treatment and its adverse effects have been considered as insufficient. DISCUSSION: The measured indicators, which were by essence subjective, convey useful information on the quality of care in cancer treatment in the initial disclosure phase, as experienced by patients. This study has in particular allowed carers to start exploring ways to improve the experience of care of their patients.

Experience of care from the perspective of individuals with cystic fibrosis and families: Results from 70 CF Foundation accredited programs in the USA.

INTRODUCTION: In 2012 and 2013, 30 adult and 40 pediatric CF Foundation-accredited programs across the United States recruited patients and families to complete an experience of care survey. This paper reports the positive attributes and the opportunities for improvement in CF care from the perspective of individuals with CF and families. METHODS: Patients and families completed the survey by web, interactive voice response, or with the help of a telecommunication professional. Funnel plot was used to determine positive attributes and improvement opportunities. Chi-square tests and 95% confidence intervals were used to determine differences between group and logistic regression models were used to determine factors associated with the experience of "best" care. RESULTS: 2090 adults with CF or parents of children with CF, 29% of the 7113 potential respondents, completed a survey. Both the adult and pediatric survey respondents reported the same 5 positive attributes of experience of care: courtesy and respect shown, easy to understand explanations, involved in decision-making, their questions were answered, and enough time with providers. Potential areas for improvement included assessing mental health and improving inpatient hospital staff's knowledge of CF. In general, results from the pediatric survey were significantly better than the adult survey. Variables predictive of "best" care experience from both adult and pediatric respondents were treatments always working and two self-care factors of finding information and working out solutions. CONCLUSION: The CF Foundation developed an experience of care survey to systematically collect and learn directly from individuals with CF and families about their impressions and observations of CF health care delivery. Respondents reported positive and respectful experiences and improvement opportunities were identified, which can help programs target specific areas to enhance the care experience.

Patient satisfaction in pediatric surgical care: a systematic review.

OBJECTIVE: This study seeks to synthesize evidence-based findings related to patient satisfaction as a process measure in pediatric surgical care. DATA SOURCES: PubMed, CINAHL, Scopus, and the Cochrane Central Register of Controlled Trials. REVIEW METHODS: We queried 4 standard search engines (1992-2013) for studies specific to pediatric surgical fields in which patient or parent satisfaction or experience of care was a primary outcome measure. Data were systematically analyzed to determine study characteristics, setting, parent or patient focus, measure of experience, and bias. Two independent investigators independently reviewed all articles. RESULTS: The initial search yielded 4748 publications (1503 duplicates), of which 170 underwent full-text review. Thirty-five were included for analysis; the majority (24/35,77%) were published in the last 5 years. Studies examined experience of the child (3/35), parent (23/35), or both (9/35). Experience and satisfaction were evaluated either by validated self-assessment instruments (8), by satisfaction tools (8), or by nonstandard institutional or author-developed tools (19). Experience was measured in the outpatient (7), preoperative (11), operative (14), and postoperative (3) care settings. Specific findings were unique to setting; however, in many studies higher satisfaction correlated with education/information giving, health care provider interpersonal behaviors, and facile/efficient care processes. CONCLUSION: The patient experience of care is a valuable quality measure that is being more frequently evaluated as a mechanism to improve pediatric surgical care processes. Findings related to patient satisfaction and experience of care may be limited due to lack of measurement using validated tools. Findings from this review may bear significance as patient experience measures become routinely integrated with quality and reimbursement.

Dysregulated responses to emotions among abstinent heroin users: correlation with childhood neglect and addiction severity.

The aim of this paper was to investigate the subjective responses of abstinent heroin users to both neutral and negative stimuli and the related hypothalamus-pituitary-adrenal reactions to emotional experience in relationship to their perception of childhood adverse experiences. Thirty male abstinent heroin dependents were included in the study. Emotional responses and childhood neglect perception were measured utilizing the State-Trait Anxiety Inventory Y-1 and the Child Experience of Care and Abuse Questionnaire. Neutral and unpleasant pictures selected from the International Affective Picture System and the Self-Assessment Manikin procedure have been used to determine ratings of pleasure and arousal. These ratings were compared with normative values obtained from healthy volunteers used as control. Blood samples were collected before and after the experimental sessions to determine both adrenocorticotropic hormone and cortisol plasma levels. Basal anxiety scores, cortisol and adrenocorticotropic hormone levels were higher in abstinent heroin users than in controls. Tests showed that anxiety scores did not change in controls after the vision of neutral slides, whilst they did in abstinent heroin addicts, increasing significantly; and increased less significantly after the unpleasant task, in comparison to controls. Abstinent heroin users showed significantly higher levels of parent antipathy and childhood emotional neglect perception than controls for both the father and the mother. Plasma adrenocorticotropic hormone and cortisol levels did not significantly increase after unpleasant slide set viewing among addicted individuals, because of the significantly higher basal levels characterizing the addicted subjects in comparison with controls. Multiple regression correlation showed a significant relationship between childhood neglect perception, arousal reaction, impaired hypothalamus-pituitary-adrenal axis response and addiction severity. Early adverse experiences seem to affect the entire interaction between hyper-arousal, reduced hormonal response to stress and addiction severity. Our findings, although obtained in a small number of subjects, indicate a significant link between the perception of parental style/care/support during childhood and the ability to cope with stressful emotional stimuli in adulthood and addiction severity.