BACKGROUND: Patient-driven innovation in health care is an emerging phenomenon with benefits for patients with chronic conditions, such as cystic fibrosis (CF). However, previous research has not examined what may facilitate or hinder the implementation of such innovations from the provider perspective.
OBJECTIVE: The aim of this study was to explain variations in the adoption of a patient-driven innovation among CF clinics.
METHODS: A comparative multiple-case study was conducted on the adoption of a patient-controlled app to support self-management and collaboration with health care professionals (HCPs). Data collection and analysis were guided by the nonadoption, abandonment, spread, scale-up, and sustainability and complexity assessment tool (NASSS-CAT) framework. Data included user activity levels of patients and qualitative interviews with staff at 9 clinics (n=8, 88.9%, in Sweden; n=1, 11.1%, in the United States). We calculated the maximum and mean percentage of active users at each clinic and performed statistical process control (SPC) analysis to explore how the user activity level changed over time. Qualitative data were subjected to content analysis and complexity analysis and used to generate process maps. All data were then triangulated in a cross-case analysis.
RESULTS: We found no evidence of nonadoption or clear abandonment of the app. Distinct patterns of innovation adoption were discernable based on the maximum end-user activity for each clinic, which we labeled as low (16%-23%), middle (25%-47%), or high (58%-95%) adoption. SPC charts illustrated that the introduction of new app features and research-related activity had a positive influence on user activity levels. Variation in adoption was associated with providers\' perceptions of care process complexity. A higher perceived complexity of the value proposition, adopter system, and organization was associated with lower adoption. In clinics that adopted the innovation early or those that relied on champions, user activity tended to plateau or decline, suggesting a negative impact on sustainability.
CONCLUSIONS: For patient-driven innovations to be adopted and sustained in health care, understanding patient-provider interdependency and providers\' perspectives on what generates value is essential.

Chronic illness requires frequent medical treatments and lifestyle restrictions that increase academic and socioemotional stressors for families. This paper presents academic intervention recommendations based on a hospital\'s approach to improving educational outcomes for children with chronic illness. A case study on an intervention for a girl with sickle cell disease (SCD) and a history of stroke. SCD is a relatively common chronic illness that has physical and psychosocial side effects that are central to other chronic illnesses (Platt, Eckman, & Hsu, 2016). A quality improvement approach resulted in five cycles of interventions that were assessed with both qualitative and quantitative measures. The initial strategy of improving academics through collaboration among the school, hospital, and family resulted in psychosocial, but not academic, improvements. Frequent tutoring, which was most achievable using online platforms, resulted in the greatest gains. The girl passed previously failed classes and advanced to the next grade. Recommendations for how to improve academic outcomes for children with chronic illness using the presented intervention strategies are discussed.

This paper explores the experiences and perceptions of Zora, an older Muslim woman living with a disability in the UK. Older disabled Muslim women in the UK often face multiple discriminations based on disability, age, gender, religious, and racial grounds and this has arguably been intensified by the COVID-19 pandemic. Drawing on multiple narrative interviews with Zora, this paper focuses on the intersections of disability, ageing, gender, race and religion within a particular social context during the COVID-19 pandemic in the UK. The paper describes the complex ways in which Zora experienced various modes of everyday disablism which were not related to the COVID-19 virus itself, rather the consequences of the movement restrictions associated with it. Much of the oppression and barriers she described were socially determined, both through direct discrimination, stares and prejudicial attitudes, and indirectly through stigmatization and an embodied fear of the reaction of others in public spaces. Nevertheless, Zora did not present herself as a victim. Instead she portrayed herself in affirmative terms, as a \'brave\' woman who resisted and overcame daily social challenges and movement restrictions as part of working toward creating a more accessible, inclusive and age-friendly society. One that is inhabitable for herself and other older disabled women facing an uncertain future.

BACKGROUND: The quality of care for the chronically ill is to be improved through interprofessional cooperation (IPC). To date, evaluation projects on IPC have mostly focused on the inpatient sector. The aim was to use a multiple case study design to investigate forms of IPC in primary care and to identify facilitating and inhibiting factors. Factors that facilitated the implementation of IPC included having a responsible person employed to provide the service, supportive training, and the introduction of evidence-based interventions. There appeared to be insufficient incentives to implement IPC and the needs of the chronically ill were poorly integrated. More systematic evaluation of IPC initiatives is needed to demonstrate their added value. Greater integration of patient needs is key.
UNASSIGNED: Formen interprofessioneller Zusammenarbeit in der ambulanten Gesundheitsversorgung - Eine fallübergreifende Analyse in der deutschsprachigen Schweiz.
UNASSIGNED: Die Qualität der Versorgung chronisch kranker Menschen soll durch eine verstärkte interprofessionelle Zusammenarbeit (IPZ) verbessert werden. Bisher konzentrieren sich (Forschungs-) Projekte zur IPZ meist auf den stationären Bereich. Ziel war es, mittels eines multiplen Fallstudiendesigns Formen von IPZ in der Grundversorgung zu untersuchen, um fördernde und hemmende Faktoren zu identifizieren. Zu den Faktoren, die die Implementierung von IPZ förderten, gehörten eine verantwortliche Person, die für diese Leistung angestellt wurde, unterstützende Schulungsmassnahmen, sowie die Einführung evidenzbasierter Interventionen. Insgesamt schienen die Anreize zur Implementierung von IPZ unzureichend und die Bedürfnisse chronisch kranker Menschen wenig integriert. Es bedarf einer systematischeren Evaluation ambulanter IPZ-Initiativen, um deren Mehrwert für eine nachhaltige Versorgung aufzuzeigen. Zentral ist eine stärkere Integration der Bedürfnisse von Patient/-innen.
UNASSIGNED: Formes de coopération interprofessionnelle dans les soins de santé ambulatoires. Une analyse transversale en Suisse alémanique.
BACKGROUND: La qualité des soins aux malades chroniques doit être améliorée par la collaboration interprofessionnelle (CIP). Jusqu’à présent, les évaluations de la CIP se sont focalisées sur le secteur hospitalier. L‘objectif de cette analyse était d‘examiner les formes de CIP en soins ambulatoires pour en déterminer les facteurs favorisants et entravants. Les facteurs favorisant la CIP incluent : avoir un gérant, assister à des formations, et utiliser des données scientifiques. Dans l‘ensemble, les programmes d’incitations à la CIP sont insuffisants et les besoins des malades chroniques mal intégrés au reste du système médical. Une évaluation systématique des initiatives à la CIP en ambulatoire est nécessaire pour démontrer leurs valeurs. Il est essentiel de prendre d’avantage compte des besoins des patients.

The aim of this study is to assess the level of agreement between adolescents\' self-assessment and parent-proxy reports on health-related quality of life (HRQOL) in Jamaican adolescents with chronic illness.
A cross-sectional study was conducted, recruiting adolescents living with a chronic illness (ALCIs)-asthma, human immunodeficiency virus, insulin-dependent diabetes mellitus, or sickle cell disease and age/sex-matched healthy adolescents. Data were collected on HRQOL from adolescents and parents using the Pediatric Quality of Life Scale. Parent-adolescent agreement was determined at group level (Wilcoxon signed-rank test) and individual level (intraclass correlation coefficient).
Two hundred twenty-six (226) parent/adolescent pairs participated: 130 ALCIs and 96 healthy peers; mean age 14.9 ± 2.8 years; 58% females. Adolescents with and without chronic illness reported similar HRQOL; parent-proxies reported better HRQOL for healthy adolescents compared to ALCIs. Intraclass correlation demonstrated higher levels of parent-adolescent correlation for ALCIs than healthy adolescents (ALCIs: 0.11-0.34; healthy adolescents: 0.01-0.10). At group level, analyses demonstrated better parent-proxy rating of QOL in all of the scores with the exception of the general health score. Parent-proxies overestimated QOL for asthma and insulin-dependent diabetes mellitus but not for sickle cell disease and human immunodeficiency virus. Linear regression modeling revealed that female sex and living with chronic illness were significant predictors of agreement.
Parent-proxies overestimated adolescents\' QOL compared to adolescents\' report regardless of whether the adolescent was living with a chronic illness or not. As such, health care providers should elicit feedback from the adolescent wherever possible and proxy reports should be used as complementary information rather than primary source.

Background: Hospitalization can be a critical time to stabilize chronically ill patients across levels that transcend medical and social determinants of health. The use of the biopsychosocial model can be instrumental in understanding both medically and psychosocially complex patient cases. An acute inpatient hospitalization provides an opportunity to mediate both intrinsic and extrinsic risk factors for both substance use disorder and suicide risk in the context of achieving medical stabilization and crisis mobilization. Case Presentation: Inpatient care of a 22-year-old African American female patient who was chronically ill involved tapping into existing resources within the larger academic hospital inclusive of both adult and pediatric expertise. This patient\'s care and treatment was multidisciplinary and involved a range of consults that further expanded both the depth and breadth of care and optimized stability from both medical and psychosocial standpoints. In fact, this patient\'s hospitalization presented a window of opportunity to facilitate a time of transition in chronic disease management and mobilize resources as part of securing wraparound care for her within a one-week timespan. Her care involved the integration of pediatrics (hematology, adolescent medicine), adult medicine (hematology, addiction medicine), and psychiatry. In addition to treating acute symptomology, underlying sources of pain stemming from her opioid use disorder were also alleviated. Furthermore, her care embodied the interface of chronic illness with opioid use, as her reported pain crises were determined to be motivated by intrinsic factors (e.g. poor coping skills from cumulative stressors) supporting her opioid use disorder. Conclusions: The biopsychosocial treatment approach taken for this patient also clearly delineated that physiological and mental health domains are interrelated aspects of chronic pain in chronic illness. Furthermore, this case also emphasized that chronically ill patients are at elevated risk of developing substance use disorders. This case study lends itself nicely to elucidating parity in physiological and mental health domains as crucial elements in promoting health and safety in patient care.

UNASSIGNED: Telehealth and home-based care options significantly expanded during the SARS-CoV2 pandemic. Sophisticated, remote monitoring technologies now exist that support at-home care. Advances in the research of smart homes for health monitoring have shown these technologies are capable of recognizing and predicting health changes in near-real time. However, few nurses are familiar enough with this technology to use smart homes for optimizing patient care or expanding their reach into the home between healthcare touch points.
UNASSIGNED: The objective of this work is to explore a partnership between nurses and smart homes for automated remote monitoring and assessing of patient health. We present a series of health event cases to demonstrate how this partnership may be harnessed to effectively detect and report on clinically relevant health events that can be automatically detected by smart homes.
UNASSIGNED: 25 participants with multiple chronic health conditions.
UNASSIGNED: Ambient sensors were installed in the homes of 25 participants with multiple chronic health conditions. Motion, light, temperature, and door usage data were continuously collected from participants\' homes. Descriptions of health events and participants\' associated behaviors were captured via weekly nursing telehealth visits with study participants and used to analyze sensor data representing health events. Two cases of participants with congestive heart failure exacerbations, one case of urinary tract infection, two cases of bowel inflammation flares, and four cases of participants with sleep interruption were explored.
UNASSIGNED: For each case, clinically relevant health events aligned with changes from baseline in behavior data patterns derived from sensors installed in the participant\'s home. In some cases, the detected event was precipitated by additional behavior patterns that could be used to predict the event.
UNASSIGNED: We found evidence in this case series that continuous sensor-based monitoring of patient behavior in home settings may be used to provide automated detection of health events. Nursing insights into smart home sensor data could be used to initiate preventive strategies and provide timely intervention.
UNASSIGNED: Nurses partnered with smart homes could detect exacerbations of health conditions at home leading to early intervention.

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an illness characterized by a variety of symptoms including post-exertional malaise, unrefreshing sleep, and cognitive impairment. A variety of case definitions (e.g., the Canadian Consensus Criteria (CCC), the Myalgic Encephalomyelitis International Consensus Criteria (ME-ICC), and the Institute of Medicine (IOM) criteria) have been used to diagnose patients. However, these case definitions are consensus-based rather than empirical.
The aim of the current study was to evaluate the validity of the aforementioned case definitions by factor analyzing a large, international sample (N = 2308) of ME/CFS symptom data. We performed primary and secondary exploratory factor analyses on the DePaul Symptom Questionnaire\'s 54-item symptom inventory. These results were compared to the CCC, the ME-ICC, and the IOM criteria.
We identified seven symptom domains, including post-exertional malaise, cognitive dysfunction, and sleep dysfunction. Contrary to many existing case criteria, our analyses did not identify pain as an independent factor.
Although our results implicate a factor solution that best supports the CCC, revisions to the criteria are recommended.Implications for rehabilitationME/CFS is a chronic illness with no consensus regarding case diagnostic criteria, which creates difficulty for patients seeking assistance and disability benefits.The current study compared three commonly used case definitions for ME/CFS by factor analyzing symptomological data from an international sample of patients.Our results suggest three primary and four secondary symptom domains which differed from all three case definitions.These findings could help reduce barriers to care for those disabled with ME/CFS by guiding the development of an empirically-based case definition.

Adolescence can be a challenging time, but even more so when diagnosed with a serious or chronic illness. Starlight Children\'s Foundation established the Livewire program after recognizing the unique needs of adolescents in hospitals. This article describes our experience of implementing an art-based project within the Livewire program, designed to facilitate the voice of adolescents with a serious or chronic illness and their siblings. We invited young people across Australia to contribute their artwork which would be used as the design for a deck of playing cards. The final 54 cards were a creative reflection of the unique interests, personalities, and experiences of 45 young people. In this article, we also share the experiences of two young people who contributed to this project. We conclude with our learnings in delivering an art-based project for young people that is not presented directly as \"therapy\".

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex multi-system disease with no cure and no FDA-approved treatment. Approximately 25% of patients are house or bedbound, and some are so severe in function that they require tube-feeding and are unable to tolerate light, sound, and human touch. The overall goal of this case report was to (1) describe how past events (e.g., chronic sinusitis, amenorrhea, tick bites, congenital neutropenia, psychogenic polydipsia, food intolerances, and hypothyroidism) may have contributed to the development of severe ME/CFS in a single patient, and (2) the extensive medical interventions that the patient has pursued in an attempt to recover, which enabled her to return to graduate school after becoming bedridden with ME/CFS 4.5 years prior. This paper aims to increase awareness of the harsh reality of ME/CFS and the potential complications following initiation of any level of intervention, some of which may be necessary for long-term healing. Treatments may induce severe paradoxical reactions (Jarisch-Herxheimer reaction) if high infectious loads are present. It is our hope that sharing this case will improve research and treatment options for ME/CFS.