Lung transplant recipients' experiences of and attitudes towards self-management: a qualitative systematic review.

OBJECTIVE: The objective of this review was to identify lung transplant recipients' experiences of and attitudes towards self-management. INTRODUCTION: Lung transplantation is an established treatment to improve the survival of patients with end-stage lung diseases and has been performed on over 40,000 patients worldwide. The current focus of care for lung transplant recipients is on their long-term management. Patients need to adapt and adhere to complex self-management tasks to prevent complications and to enable them to keep the transplanted graft as long as possible. However, to date, no qualitative systematic review exists that identifies lung transplant recipients' experiences of and attitudes towards self-management. INCLUSION CRITERIA: This review included adults over 18 years of age who had received a lung transplant and were able to perform their self-management tasks independently. All studies that investigated lung transplant recipients' experiences of and attitudes towards self-management in any setting were included in this review. All types of studies that focused on qualitative data, including, but not limited to, phenomenology, grounded theory, ethnography, action research, and feminist research were considered for inclusion. Mixed methods studies were included only when qualitative data could be extracted separately, and if they reported results relating to the phenomena of interest. Studies published in English or German were considered for inclusion in this review. METHODS: The search strategy aimed to find published studies from 6 databases from the database inception to March 2022. Methodological quality of studies was independently assessed by 2 independent reviewers using the JBI checklist for qualitative research. A standardized data extraction tool from JBI was used by 2 reviewers for data collection. Meta-aggregation was undertaken to synthesize the data, and the final synthesis of the findings was reached through discussion. Results were graded according to ConQual. RESULTS: Ten studies with a sample size from 8 to 73 participants from North America and Central/Northern Europe were included in the review. The critical appraisal scores of the included studies varied from 3 to 9 out of 10. A total of 137 findings were extracted and aggregated to form 19 categories and the following 4 aggregated syntheses: i) Changes in routines, beliefs, and sense of responsibility are essential for better adaptation and self-management after lung transplantation; ii) Life after transplantation is characterized by both positive and negative feelings and experiences; iii) Better adjustment and self-management after a lung transplant require dealing with one's own feelings and beliefs; iv) After transplantation, engaging with relatives, friends, medical team and donors is essential to improve experiences and adapt to being a transplant recipient. Based on the ConQual scores, 2 synthesized findings were graded as moderate and 2 as low. CONCLUSIONS: Nuanced emotional, social, relational, and psychological adjustment is required of lung transplant recipients to be able to successfully self-manage. Loved ones and health professionals contribute significantly to this process, but psychosocial or peer support may further facilitate this transition. SUPPLEMENTAL DIGITAL CONTENT: A German-language version of the abstract of this review is available as Supplemental Digital Content [http://links.lww.com/SRX/A46].

Access, acceptance and adherence to cancer prehabilitation: a mixed-methods systematic review.

PURPOSE: The purpose of this systematic review is to better understand access to, acceptance of and adherence to cancer prehabilitation. METHODS: MEDLINE, CINAHL, PsychINFO, Embase, Physiotherapy Evidence Database, ProQuest Medical Library, Cochrane Library, Web of Science and grey literature were systematically searched for quantitative, qualitative and mixed-methods studies published in English between January 2017 and June 2023. Screening, data extraction and critical appraisal were conducted by two reviewers independently using Covidence™ systematic review software. Data were analysed and synthesised thematically to address the question 'What do we know about access, acceptance and adherence to cancer prehabilitation, particularly among socially deprived and minority ethnic groups?' The protocol is published on PROSPERO CRD42023403776 RESULTS: Searches identified 11,715 records, and 56 studies of variable methodological quality were included: 32 quantitative, 15 qualitative and nine mixed-methods. Analysis identified facilitators and barriers at individual and structural levels, and with interpersonal connections important for prehabilitation access, acceptance and adherence. No study reported analysis of facilitators and barriers to prehabilitation specific to people from ethnic minority communities. One study described health literacy as a barrier to access for people from socioeconomically deprived communities. CONCLUSIONS: There is limited empirical research of barriers and facilitators to inform improvement in equity of access to cancer prehabilitation. IMPLICATIONS FOR CANCER SURVIVORS: To enhance the inclusivity of cancer prehabilitation, adjustments may be needed to accommodate individual characteristics and attention given to structural factors, such as staff training. Interpersonal connections are proposed as a fundamental ingredient for successful prehabilitation.

Patients' experiences of cancer immunotherapy with immune checkpoint inhibitors: A systematic review and thematic synthesis.

AIM: To obtain a deeper understanding of peoples' experiences of cancer treatments with immune checkpoint inhibitors (ICIs). BACKGROUND: ICIs are transforming survival outcomes for many with certain advanced cancers. Given the possibility of unique immune-related adverse events (irAEs), understanding treatment experiences is crucial to identify support needs and provide safe and effective person-centred care. DESIGN: A systematic review of qualitative research and thematic synthesis. To report this review, the Preferred Reporting Items for Systematic Analysis and Meta Analysis (PRISMA) checklist and Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) guidance have been used. DATA SOURCES: MEDLINE, EMBASE, PsycINFO, CINAHL and Web of Science databases were searched in January 2022 for eligible studies published in English from database inception. REVIEW METHODS: Two reviewers independently screened records, identified papers for inclusion and appraised methodological quality using the Critical Appraisal Skills Programme checklist. Themes were developed using thematic synthesis. RESULTS: Eighteen papers were included and three analytical themes developed: immune checkpoint inhibitor treatment decision-making; the experience and impact of immune checkpoint inhibitor treatments; and appraising and responding to irAEs. CONCLUSION: The synthesis renders visible individuals' unmet information, psychological and practical support needs. It identifies shortcomings in immune checkpoint inhibitor treatment decision-making processes and highlights the need for healthcare professionals to recognise and sensitively handle individuals' treatment expectations. Individuals' understandings of and responses to irAEs are also illustrated, and attention drawn to patients' concerns about healthcare professionals' checkpoint inhibitor and irAEs knowledge. IMPLICATIONS FOR PATIENT CARE: To sensitively manage treatment expectations and uncertainties, and optimise health outcomes, there are distinct points in treatment trajectories where care and support might require adapting and enhancing. IMPACT: This review addresses people's experiences of immune checkpoint inhibitor treatments. The core findings reveal unmet information, psychological and practical support needs. Insights derived from this review will enhance individuals' experiences and outcomes and healthcare professionals' practice. PATIENT OR PUBLIC CONTRIBUTION: No patient or public involvement.

A qualitative exploration of the strategies used by patients and nurses when navigating a standardised care programme.

The main aim of this paper is to explore and discuss the interesting juxtaposition of patient involvement within a standardised Enhanced Recovery After Surgery care programme (ERAS). We address our aim by examining the work and strategies of nursing staff caring for patients during postoperative recovery from surgery, exploring how these two potentially competing priorities might effectively co-exist within a hospital ward. This was a qualitative exploratory study, with data generated through 42 semi-structured interviews with patients and nurses who had taken part in an ERAS programme in one of three hospital wards in the United Kingdom, adopting a reflexive thematic approach to data analysis. We shine a light on the work undertaken by patients and nurses during the navigation of postoperative recovery, identifying strategies of collaboration and negotiation during this journey. Furthermore, we also identify and consider patients engaged in peer-peer support during postoperative recovery. This paper adds to the existing literature and current ways of thinking in relation to the quest for standardised, clinically effective care balanced with the aspirations for individualised, patient-centred care. This paper also helps inform thinking about the use of care pathways in relation to service delivery, considering how best to initiate and deploy best practice aimed at safe and effective postoperative recovery.

A qualitative study of nurse-patient communication and information provision during surgical pre-admission clinics.

BACKGROUND: Health-care service users are often being described as 'co-producers' with an active role in their care. However, there are challenges associated with this approach, including how standardization affects personalized care, and the ability of patients to retain high volumes of information. OBJECTIVE: Our study explores patient and nursing perspectives of information provision in the pre-admission element of an Enhanced Recovery After Surgery programme, an evidence-based approach implemented to improve the quality of surgical care. Our analysis has been informed by an evidence-based model developed by Grande et al Patient Educ Couns. 2014;95:281. DESIGN/SETTING AND PARTICIPANTS: This was a qualitative study including observations of pre-admission clinics and semi-structured interviews across three surgical wards. Patients (n = 21) and registered nurses (n = 21) were purposively selected for interviews. RESULTS: Patients welcomed the opportunity for active involvement in their care. However, we also identified informational boundaries and how illness and treatment-related anxieties were barriers to patient engagement with the information provided. DISCUSSION: We recommend that to support a patient-centred and individualized approach to patient involvement the 'information (giving) + activation' element of Grande et al Patient Educ Couns. 2014;95:281 model be reconfigured to allow for 'information (giving) + exploration +activation'. CONCLUSION: Nurses need to feel empowered to adopt strategies that allow for different informational needs, rather than adopting a one-size-fits-all paternalistic approach. PATIENT CONTRIBUTION: This study focused on patient involvement and we give thanks to all the patients who took part in interviews and those who allowed us to observe their care.

Exploration of ICD-9-CM coding of chronic disease within the Elixhauser Comorbidity Measure in patients with chronic heart failure.

INTRODUCTION: International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) codes capture comorbidities that can be used to risk adjust nonrandom patient groups. We explored the accuracy of capturing comorbidities associated with one risk adjustment method, the Elixhauser Comorbidity Measure (ECM), in patients with chronic heart failure (CHF) at one Veterans Affairs (VA) medical center. We explored potential reasons for the differences found between the original codes assigned and conditions found through retrospective review. METHODS: This descriptive, retrospective study used a cohort of patients discharged with a principal diagnosis coded as CHF from one VA medical center in 2003. One admission per patient was used in the study; with multiple admissions, only the first admission was analyzed. We compared the assignment of original codes assigned to conditions found in a retrospective, manual review of the medical record conducted by an investigator with coding expertise as well as by physicians. Members of the team experienced with assigning ICD-9-CM codes and VA coding processes developed themes related to systemic reasons why chronic conditions were not coded in VA records using applied thematic techniques. RESULTS: In the 181-patient cohort, 388 comorbid conditions were identified; 305 of these were chronic conditions, originally coded at the time of discharge with an average of 1.7 comorbidities related to the ECM per patient. The review by an investigator with coding expertise revealed a total of 937 comorbidities resulting in 618 chronic comorbid conditions with an average of 3.4 per patient; physician review found 872 total comorbidities with 562 chronic conditions (average 3.1 per patient). The agreement between the original and the retrospective coding review was 88 percent. The kappa statistic for the original and the retrospective coding review was 0.375 with a 95 percent confidence interval (CI) of 0.352 to 0.398. The kappa statistic for the retrospective coding review and physician review was 0.849 (CI, 0.823-0.875). The kappa statistic for the original coding and the physician review was 0.340 (CI, 0.316-0.364). Several systemic factors were identified, including familiarity with inpatient VA and non-VA guidelines, the quality of documentation, and operational requirements to complete the coding process within short time frames and to identify the reasons for movement within a given facility. CONCLUSION: Comorbidities within the ECM representing chronic conditions were significantly underrepresented in the original code assignment. Contributing factors potentially include prioritization of codes related to acute conditions over chronic conditions; coders' professional training, educational level, and experience; and the limited number of codes allowed in initial coding software. This study highlights the need to evaluate systemic causes of underrepresentation of chronic conditions to improve the accuracy of risk adjustment used for health services research, resource allocation, and performance measurement.

Adherence to sleep apnea therapy and use of lipid-lowering drugs: a study of the healthy-user effect.

BACKGROUND: Evidence that continuous positive airway pressure (CPAP) reduces cardiovascular morbidity comes largely from observational studies. This association may be confounded if CPAP adherents are healthier in ways not measured by investigators. We assessed whether patients adhering to lipid-lowering medications were more adherent to CPAP. METHODS: This was a retrospective cohort study undertaken at the Philadelphia Veterans Affairs (VA) Medical Center (2005-2006) of consecutive patients on lipid-lowering therapy newly initiating CPAP for obstructive sleep apnea. Adherence to medications dispensed via the VA closed-pharmacy system was measured as the proportion of days covered (>/=80% vs < 80%) in the year prior to CPAP initiation. CPAP adherence was defined as >/= 4 h/d of "mask-on" time, measured electronically daily during the first week of CPAP. We examined the association between medication adherence and CPAP adherence using multivariable logistic regression. RESULTS: Complete data were available for 117 of 142 (81.5%) subjects. After adjustment for age, race, medical comorbidity, and sleep apnea-related clinical factors, subjects with low medication adherence demonstrated a 40.1% (95% CI, 30.0-51.0) probability of using CPAP >/= 4 h/d compared with 55.2% (95% CI, 46.9-63.1) for subjects with adequate (>/=80%) medication adherence (adjusted for comparison, odds ratio (OR) = 1.8 [95% CI, 1.0-3.3], P = .04). Married patients were more adherent to medications and CPAP; inclusion of this factor reduced to nonsignificance the association of medication and CPAP adherence (OR = 1.6 [95% CI, 0.9-2.8], P = .12). CONCLUSION: Patients consistently refilling lipid-lowering medications were more adherent to CPAP, suggesting that differences in medication adherence or other health-promoting behaviors should be investigated in future nonrandomized, observational studies linking CPAP adherence and cardiovascular outcomes.

Neighborhood of residence is associated with daily adherence to CPAP therapy.

STUDY OBJECTIVES: Adherence to continuous positive airway pressure (CPAP) therapy for obstructive sleep apnea is poor. Risk factors for nonadherence are not well understood but may reflect individual or neighborhood socioeconomic factors. We sought to determine the association of socioeconomic status and initial CPAP adherence. DESIGN: Retrospective cohort study, 2005 to 2006. SETTING: Philadelphia VA Medical Center. PARTICIPANTS: Of 330 consecutive veterans who met study criteria for initiation of CPAP therapy for newly diagnosed sleep apnea, 266 had complete data for study inclusion. INTERVENTIONS: N/A. MEASUREMENTS: Through a multivariable logistic regression model, using an outcome of objectively measured CPAP use - 4 h daily during the first week of treatment, we tested whether patients from higher socioeconomic neighborhoods had higher CPAP adherence. We measured neighborhood socioeconomic status with an index derived from the 2000 U.S. Census at the block group-level composed of median household income, male and female employment, adult high school completion, married households, and minority composition. RESULTS: CPAP adherence > 4 h occurred on 48.9% of 1,805 patient-days observed for the 266 subjects. After adjustment for individual sociodemographic characteristics and medical comorbidity, the probability of daily CPAP use 4 h ranged from 34.1% (95% CI, 26.4-42.7) for subjects from a low socioeconomic neighborhood (5th percentile) to 62.3% (95% CI, 53.8-70.1) for subjects from a high (95th percentile) neighborhood. CONCLUSIONS: In a retrospective cohort of veterans, initial CPAP adherence was closely associated with higher neighborhood socioeconomic factors. Future investigation should target specific impediments to adherence in the home and neighborhood environment.