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1.  From pediatric to adult care: strategic evaluation of a transition program for patients with osteogenesis imperfecta 
Achieving a successful transition from pediatric to adult care for young adults with special needs, especially rare genetic diseases such as osteogenesis imperfecta (OI), is a prominent issue in healthcare research. This transition represents a challenge for patients with OI, their families, clinicians and healthcare managers because of the complex nature of the process and the lack of evaluation of existing transition programs. We evaluated a transition program for adolescents and young adults with OI from a pediatric orthopedic hospital to adult care.
Data were collected by interview, observation, and document review from April 2013 to October 2013. Participants included six patients with OI, four parents, and 15 staff, including administrators, coordinators, social workers, nurses, pediatricians, surgeons, occupational therapists and physiotherapists. A SWOT (Strengths, Weaknesses, Opportunities and Threats) analysis was performed.
The strengths of the transition program included a solid theoretical approach based on a partnership with parents, and a comprehensive transition model based on fostering independent living and professional integration. The program’s main weaknesses were the successive organizational changes and discontinuation of certain transition activities, and the potential conflict between the transition program and participation in research protocols. Further opportunities include the implementation of a multi-site transition model with cross-site personnel and user evaluations, with the inclusion of second-generation patients. Dissatisfaction reported by some care-team members at the adult care hospital could threaten collaboration among institutions involved in the transition process, whereas dissatisfaction of some former patients may reduce their perceptions of quality of care received during the transition.
This study confirmed that a “one-size-fits-all” transition model for patients with OI would be inappropriate across, or even within institutions. Opportunities should be seized to create tailored, theoretically-sound transition programs that reflect patient preferences, especially those of young adults with complex and chronic health conditions. Alignment with other organizational activities should be considered, and ongoing evaluation of transition programming may be required. This SWOT analysis and utilization-focused evaluation has led to a comprehensive new project to improve the transition program for patients with OI and other conditions requiring special follow-up.
PMCID: PMC4228071  PMID: 25366588
Transition program; Osteogenesis imperfecta; Program evaluation; Healthcare system; Child and adolescent health
2.  Comfort of General Internists and General Pediatricians in Providing Care for Young Adults with Chronic Illnesses of Childhood 
Journal of General Internal Medicine  2008;23(10):1621-1627.
As an increasing number of patients with chronic conditions of childhood survive to adulthood, experts recommend that young adults with chronic conditions transfer from child-focused to adult-focused primary care. Little, however, is known about how comfortable physicians are caring for this population.
To assess the comfort of general internists and general pediatricians in treating young adult patients with chronic illnesses originating in childhood as well as the factors associated with comfort.
In a random sample, 1288 of 2434 eligible US general internists and pediatricians completed a mailed survey (response rate = 53%).
We measured respondents’ comfort level in providing primary care for a patient with sickle cell disease (SCD) or cystic fibrosis (CF). We also measured levels of disease familiarity, training and subspecialty support, as well as individual physician characteristics.
Fifteen percent of general internists reported being comfortable as the primary care provider for adults with CF and 32% reported being comfortable providing primary care for adults with SCD, compared with 38% of pediatricians for CF ( < .001) and 35% for SCD ( > 0.05). Less than half of general internists felt that their specialty should take primary care responsibility for adult patients with CF and SCD.
A majority of general internists and pediatricians are not comfortable providing primary care for young adults with chronic illnesses of childhood origin, such as CF and SCD. Efforts to increase treatment comfort among providers may help with the transition to adult-focused care for the growing numbers of young adults with complex chronic conditions.
PMCID: PMC2533372  PMID: 18661191
transitional care; cystic fibrosis; sickle cell disease; young adults; adolescents; children with special health care needs; primary care; childhood diseases; health care transitions
3.  Exploration of transitional life events in individuals with Friedreich ataxia: Implications for genetic counseling 
Human development is a process of change, adaptation and growth. Throughout this process, transitional events mark important points in time when one's life course is significantly altered. This study captures transitional life events brought about or altered by Friedreich ataxia, a progressive chronic illness leading to disability, and the impact of these events on an affected individual's life course.
Forty-two adults with Friedreich ataxia (18-65y) were interviewed regarding their perceptions of transitional life events. Data from the interviews were coded and analyzed thematically using an iterative process.
Identified transitions were either a direct outcome of Friedreich ataxia, or a developmental event altered by having the condition. Specifically, an awareness of symptoms, fear of falling and changes in mobility status were the most salient themes from the experience of living with Friedreich ataxia. Developmental events primarily influenced by the condition were one's relationships and life's work.
Friedreich ataxia increased the complexity and magnitude of transitional events for study participants. Transitional events commonly represented significant loss and presented challenges to self-esteem and identity. Findings from this study help alert professionals of potentially challenging times in patients' lives, which are influenced by chronic illness or disability. Implications for developmental counseling approaches are suggested for genetic counseling.
Human development can be described in terms of key transitional events, or significant times of change. Transitional events initiate shifts in the meaning or direction of life and require the individual to develop skills or utilize coping strategies to adapt to a novel situation [1,2]. A successful transition has been defined as the development of a sense of mastery over the changed event [3].
Transitions can be influenced by a variety of factors including one's stage of development, such as graduation from high school, historical events, including war, and idiosyncratic factors, such as health status [4,5]. Of particular interest in the present study are transitional life events, brought about or altered by progressive chronic illness and disability, and the impact of these events on the lives of affected individuals.
It has been recognized that the clinical characteristics of a chronic illness or disability may alter the course and timing of many developmentally-related transitional events [6]. For example, conditions associated with a shortened lifespan may cause an individual to pursue a career with a shorter course of training [6]. Specific medical manifestations may also promote a lifestyle incongruent with developmental needs [6,7]. For example, an adolescent with a disability may have difficulty achieving autonomy because of his/her physical dependence on others.
In addition to the aforementioned effects of chronic illness and disability on developmentally-related transitional events, a growing body of literature has described disease-related transitional events: those changes that are a direct result of chronic illness and disability. Diagnosis has received attention as being a key disease-related transitional event [8,9]. Studies have also noted other disease transitions related to illness trajectory [10], as the clinical features of the disease may require the individual to make specific adaptations. Disease-related events have also been described in terms of accompanying psychological processes, such as one's awareness of differences brought about by illness [11].
While disease-related events are seemingly significant, the patient's perception of the events is varied. Some events may be perceived as positive experiences for the individual. For example, a diagnosis may end years of uncertainty. Some individuals may perceive these transitional events as insignificant, as they have accommodated to the continual change brought about by a chronic disease [12,13].
The aforementioned impact of disability and chronic illness on transitional events may create psychological stress. Developed by Lazarus and Folkman, the Transitional Model of Stress and Coping describes the process of adaptation to a health condition [14]. This model purports that individuals first appraise a stressor and then utilize a variety of coping strategies in order to meet the stressor's demands [14]. Thus, in the context of chronic illness, the ability of the individual to cope successfully with the stress of a health threat contributes to the process of overall adaptation to the condition.
The process of adaptation can be more complex when the chronic illness or disability is progressive. Each transition brought about or altered by the disability may also represent additional loss, including the loss of future plans, freedom in social life and the ability to participate in hobbies [15]. These losses may be accompanied by grief, uncertainty, and a continual need for adaptation [16,17].
Friedreich ataxia (FRDA) is one example of a progressive disorder, leading to adolescent and adult onset disability. To better understand patients' perceptions of key transitional events and the factors perceived to facilitate progression through these events, individuals with FRDA were interviewed.
FRDA is a rare, progressive, neurodegenerative disorder affecting approximately one in 30,000 people in the United States [18]. It equally affects both men and women. Individuals with FRDA experience progressive muscle weakness and loss of coordination in the arms and legs. For most patients, ataxia leads to motor incapacitation and full-time use of a wheelchair, commonly by the late teens or early twenties. Other complications such as vision and hearing impairment, dysarthria, scoliosis, diabetes mellitus and hypertrophic cardiomyopathy may occur [19,20]. Cardiomyopathy and respiratory difficulties often lead to premature death at an average age of 37 years [21]. Currently, there are no treatments or cures for FRDA. Little is known about the specific psychological or psychosocial effects of the condition.
FRDA is an autosomal recessive condition. The typical molecular basis of Friedreich ataxia is the expansion of a GAA trinucleotide repeat in both copies of the FXN gene [22]. Age of onset usually occurs in late childhood or early adolescence. However, the availability of genetic testing has identified affected individuals with an adult form of the condition. This late-onset form is thought to represent approximately 10-15% of the total FRDA population [23].
Health care providers of individuals with progressive, neurodegenerative disorders can help facilitate their patients' progression through transitional events. Data suggest that improvements should be made in the care of these individuals. Shaw et al. [24] found that individualized care that helps to prepare patients for transition is beneficial. Beisecker et al. [25] found that patients desire not only physical care from their providers, but also emotional and psychosocial support.
Genetic counselors have an important opportunity to help patients with neuromuscular disorders progress through transitional events, as several of these conditions have a genetic etiology. Genetic counselors in pediatric and adult settings often develop long-term relationships with patients, due to follow-up care. This extended relationship is becoming increasingly common as genetic counselors move into various medical sub-specialties, such as neurology, ophthalmology, oncology and cardiology.
The role of the genetic counselor in addressing the psychosocial needs of patients has been advocated, but rarely framed in the context of developmental events [26]. Data suggest that patients may not expect a genetic counselor to address psychosocial needs [27]. In a survey of genetic counseling patients, Wertz [28] found a majority of respondents understood genetic conditions to have a moderate to serious effect on family life and finances, while almost half perceived there to be an effect on the spouse, quality of life, and the relationship between home and work. However, these topics were reportedly not discussed within genetic counseling sessions [27,28]. Overall, there is limited information about the experiences of transitional life events in FRDA, as well as a lack of recommendations for genetic counselors and other health care providers to assist patients through these events.
Our study investigated perceptions of patients with Friedreich ataxia to 1) identify key transitional events and specific needs associated with events; 2) describe perception of factors to facilitate progression through the identified events; and 3) explore the actual or potential role of the health care provider in facilitating adaptation to the identified events. Data were used to make suggestions for developmental genetic counseling approaches in the context of ongoing care of clients with hereditary, progressive, neurodegenerative conditions.
PMCID: PMC2987979  PMID: 20979606
4.  Transitional Care in Inflammatory Bowel Disease 
Gastroenterology & Hepatology  2011;7(1):26-32.
Transitional care is an organized effort to provide pediatric patients with the tools and resources they need to assume personal responsibility for their medical care while facilitating their transfer from a pediatrician to an adult practitioner. Since inflammatory bowel disease (IBD) is usually chronic and up to 25% of IBD patients are diagnosed before the age of 18 years, transitional care is an important consideration for adolescent and young adult patients. The importance of transitional care for chronic diseases that begin in childhood has been recognized in a number of published recommendations. However, most of these recommendations arise from intuitive reasoning, as physicians lack information regarding the need for transitional care, optimal delivery protocols, and the efficacy of transition programs. Even fewer studies have been published regarding transitional care in IBD. Current guidelines stress the importance of providing patients with educational resources to help them develop the skills they need to manage their care as independent adults, introducing the concept of transfer to adult care in advance of the actual transfer, and developing routes of communication to facilitate the transfer from pediatric to adult care providers. Future studies should aim to elucidate which programs are effective and how they should be implemented.
PMCID: PMC3038313  PMID: 21346849
Adolescent healthcare; inflammatory bowel disease; pediatrics; transition to adult medicine
5.  Secondhand smoke exposure assessment and counseling in the Chinese pediatric setting: a qualitative study 
BMC Pediatrics  2014;14(1):266.
Assisting smoking parents to quit smoking and eliminating the secondhand smoke (SHS) exposure of their children is a global health priority. Engaging healthcare workers in developing countries to address this priority has been a challenge. This study intends to explore issues around current practice related to SHS exposure assessment and counseling and identify barriers to SHS exposure reduction counseling in the Chinese pediatric setting.
We conducted qualitative interviews (11 focus groups discussions (FGDs) with pediatricians, 6 FGDs with pediatric nurses and 11 in-depth interviews (IDIs) with hospital administrators) among 101 health-care professionals (HCP) from 5 hospitals in four major cities of Guangxi Province, China. All FGDs/ IDIs were audio recorded and analysed thematically.
The findings suggest that few Chinese pediatricians routinely address the SHS exposure of children in their usual practice. All HCPs felt the need for clinical interventions to promote SHS exposure reduction for children. Primary barriers to SHS exposure reduction counseling in the Chinese pediatric setting included: lack of skills and training in tobacco use reduction and cessation counseling; time constraints and heavy workloads, uncertainty about the usefulness of smoking cessation interventions and lack of hospital-wide systems requiring pediatricians to record tobacco use or SHS exposure information. Ideas for overcoming these barriers were building capacity of pediatricians, collaboration with international organization to initiate training, engaging top level leaders in the effort and ensuring financial resources to support the program.
This study among hospital administrators and service providers in China demonstrated a high level of interest in delivering SHS exposure reduction interventions in the pediatric setting. The findings can inform the creation and delivery of clinical interventions in China to promote SHS exposure reduction to children in the pediatric setting.
Electronic supplementary material
The online version of this article (doi:10.1186/1471-2431-14-266) contains supplementary material, which is available to authorized users.
PMCID: PMC4287587  PMID: 25316512
Secondhand smoke; Pediatric setting; Healthcare workers; Counseling; Chinese; Tobacco control; Qualitative study
6.  Multicentre randomized controlled trial of structured transition on diabetes care management compared to standard diabetes care in adolescents and young adults with type 1 diabetes (Transition Trial) 
BMC Pediatrics  2013;13:163.
Transition from pediatric to adult diabetes care is a high risk period during which there is an increased rate of disengagement from care. Suboptimal transition has been associated with higher risks for acute and chronic diabetes-related complications. The period of emerging adulthood challenges current systems of healthcare delivery as many young adults with type 1 diabetes (T1D) default from diabetes care and are at risk for diabetes complications which are undetected and therefore untreated. Despite the importance of minimizing loss to follow-up there are no randomized control trials evaluating models of transition from pediatric to adult diabetes care.
This is a multicentre randomized controlled trial. A minimum of 188 subjects with T1D aged between 17 and 20 years will be evaluated. Eligible subjects will be recruited from three pediatric care centres and randomly assigned in a 1:1 ratio to a structured transition program that will span 18 months or to receive standard diabetes care. The structured transition program is a multidisciplinary, complex intervention aiming to provide additional support in the transition period. A Transition Coordinator will provide transition support and will provide the link between pediatric and adult diabetes care. The Transition Coordinator is central to the intervention to facilitate ongoing contact with the medical system as well as education and clinical support where appropriate. Subjects will be seen in the pediatric care setting for 6 months and will then be transferred to the adult care setting where they will be seen for one year. There will then be a one-year follow-up period for outcome assessment. The primary outcome is the proportion of subjects who fail to attend at least one outpatient adult diabetes specialist visit during the second year after transition to adult diabetes care. Secondary outcome measures include A1C frequency measurement and levels, diabetes related emergency room visits and hospital admissions, frequency of complication screening, and subject perception and satisfaction with care.
This trial will determine if the support of a Transition Coordinator improves health outcomes for this at-risk population of young adults.
Trial registration
Trial Registration Number: NCT01351857
PMCID: PMC3879408  PMID: 24106787
Transition care; Adolescents and young adults; Transition intervention; Chronic illness; Type 1 diabetes; Healthcare systems
7.  A Pilot Study Exploring the Role of Physical Therapists and Transition in Care of Pediatric Patients with Cystic Fibrosis to the Adult Setting 
Cystic fibrosis (CF) is a disease that requires intensive multidisciplinary care, including care by physical therapists (PTs). People with CF are now living well into adulthood, necessitating a transfer of care from the pediatric setting to an adult one. Physical therapists play a large role in the care of the person with CF; however, there is little known about the PT role in transition of care.
To explore transition issues for people with CF from the perspective of PTs.
An 18-question online survey was sent to PTs via an electronic CF listserv. Questions were derived from an analysis of transition literature in CF and other chronic childhood conditions. Physical therapists who reported treating people with CF gave their opinions on issues impacting transition from their perspective as well as their perception of patient and parent concerns. Descriptive statistics were used for data analysis.
A total of 26 PTs completed the survey. A majority, 61.5%, reported that there was a transition program at their facility, with 42.3% involving physical therapy. Common themes for patients and parents included feeling uncertain about: knowledge of the adult physician, acquiring pulmonary infections in the adult setting, and pace of the adult clinic. Physical therapists were concerned about adherence with airway clearance and exercise following transfer to the adult clinic.
The role of PT in transition programs is quite varied. Physical therapists should address common concerns of their patients and families to improve the transition process and possibly impact adherence to the PT plan of care.
PMCID: PMC3677184  PMID: 23754936
transition of care; cystic fibrosis; physical therapy
8.  Diabetes care for emerging adults: transition from pediatric to adult diabetes care systems 
With the increasing prevalence of diabetes mellitus in children, transitioning patients from childhood to adulthood are increasing. High-risk behaviors and poor glycemic control during the transition period increase the risk for hypoglycemia and hyperglycemia as well as chronic microvascular and macrovascular complications. Discussions regarding complications and preparations for transition must take place before the actual transition to adult care systems. Pediatric care providers should focus on diabetes self-management skills and prepare at least 1 year prior to the transfer. Pediatric providers should also provide a written summary about previous and current glycemic control, complications and the presence of mental health problems such as disordered eating behaviors and affective disorders. Transition care should be individualized, with an emphasis on diabetes self-management to prevent acute and long-term complications. Regular screening and management of complications should proceed according to pediatric and adult guidelines. Birth control, use of alcohol, smoking and driving should also be discussed. Barriers to self-management and care must be recognized and solutions sought. The goals of transitional care are to effectively transition the diabetic patient from the pediatric to adult care system with less elapsed time in between and to improve post-transition outcome. Previous studies regarding diabetes transitional care programs including patient education programs, medical coordinators and auxiliary service systems reported promising results. However, there is a lack of evidence regarding best practices in transition care. Further studies are needed to provide evidence based transitional care programs that take both medical and psychosocial aspects of diabetes care into consideration.
PMCID: PMC4027079  PMID: 24904862
Transition to adult care; Diabetes mellitus
9.  Inflammatory bowel disease nurses in Canada: An examination of Canadian gastroenterology nurses and their role in inflammatory bowel disease care 
The multidisciplinary approach required to treat patients with inflammatory bowel disease (IBD) involves contributions from physicians, nurses and dieticians, among others. Given the fluctuating nature of IBD, and the need for both maintenance therapy and acute interventions to treat disease flares, the roles played by registered nurses and nurse practitioners have emerged as central to managing patients with IBD in studies from the United Kingdom. The authors of this study developed a survey with the aim of similarly assessing nurses’ roles in the Canadian setting.
Inflammatory bowel disease (IBD) is a chronic relapsing illness primarily including Crohn disease and ulcerative colitis. The disease course often fluctuates over time, and requires maintenance therapy and acute interventions to target disease flares. IBD management requires a multidisciplinary approach, with care from physicians, nurses, dieticians, social workers and psychologists. Because nurses play a pivotal role in managing chronic disease, the aim of the present study was to assess and determine how many nurses work primarily with IBD patients in Canada.
A 29-question survey was developed using an Internet-based survey tool ( to investigate nursing demographics, IBD nursing roles and nursing services provided across Canada. Distribution included the Canadian Society of Gastroenterology Nurses and Associates, the Canadian Association of Gastroenterology, Progress (AbbVie Corporation, USA) and BioAdvance (Janssen Inc, USA) coordinators (via e-mail), and online availability for 15 weeks.
Of 275 survey respondents, 98.2% were female nurses, with 68.7% employed in full-time positions. Among them, 42.5% were between 51 and 60 years of age, and 32.4% were between 41 and 50 years of age. In addition, 53.8% were diploma-prepared registered nurses, 35.3% were Baccalaureate-prepared nurses and 4.4% were Masters-prepared nurses. Almost one-half (44% [n=121]) were employed in Ontario, followed by 19.6% (n=54) in Alberta and 9.1% (n=25) in British Columbia. All provinces were represented with the exception of Nunavut and the Northwest Territories. Forty-three per cent (n=119) of nurses identified as working in endoscopy units. Of the 90% who responded as working with IBD patients, only 30% (n=79) had a primary role in IBD care. Among these 79 nurses with a primary role in IBD care, 79.7% worked with the adult population, 10.1% with the pediatric population, and 10.1% worked with both adult and pediatric patients. Their major service was an outpatient setting (67.1%).
Survey results showed that only a small percentage of Canadian gastroenterology nurses provide clinical IBD care. Many have multiple roles and responsibilities, and provide a variety of services. The exact depth of care and service is unclear and further study is needed.
PMCID: PMC4071889  PMID: 24501725
Inflammatory bowel disease; Nursing; Nursing roles
10.  Transition to adult care: Systematic assessment of adolescents with a chronic illness and their medical teams 
The Journal of pediatrics  2011;159(6):994-998.e2.
To examine the process of transition from pediatric to adult healthcare services from the perspectives of young adults with chronic disease and pediatric and adult healthcare providers.
Study design
A qualitative approach using focus group interviews was performed to investigate transition experiences. Novel innovation games were also utilized to generate data. Content and narrative analyses of interview transcripts were performed.
Six focus groups were conducted with 10 young adults with chronic disease and 24 healthcare providers. Content analysis yielded 3 content domains: transition experiences in the context of relationships between patients, parents, and healthcare providers; differences between pediatric and adult-oriented medicine and how these differences inhibit or facilitate transition; and identifying transition services that should be provided to young patients with chronic disease.
This study demonstrates the need for gradual transfer of disease management from parent to child and better communication between adult and pediatric services during the transition process. Pediatric medicine and adult medicine represent different subcultures; acknowledging these differences may improve cooperation during transition from pediatric to adult providers. Young adult patients with chronic disease embrace the use of technology for specific interventions to improve the transition experience.
PMCID: PMC3215794  PMID: 21784450
11.  Pediatricians’ knowledge, attitudes, and practice patterns regarding special education and Individualized Education Programs 
Academic pediatrics  2013;13(5):430-435.
The medical community has called upon pediatricians to be knowledgeable about an Individualized Education Program (IEP). We sought to: (1) Evaluate pediatricians’ knowledge and attitudes regarding special education (2) Examine the relationship between perceived responsibilities and practice patterns and (3) Identify barriers that impact pediatricians’ ability to provide comprehensive care to children with educational difficulties.
Surveys were mailed to a national sample of 1000 randomly selected general pediatricians and pediatric residents from October 2010 to February 2011.
The response rate was 47%. Of the knowledge items, respondents answered an average of 59% correctly. The majority of respondents felt pediatricians should be responsible for identifying children who may benefit from special education services and assist families in obtaining services, but less than 50% felt they should assist in the development of an IEP. The majority of pediatricians inquired whether a child is having difficulty at school, but far less conducted screening tests or asked parents if they needed assistance obtaining services. Overall, the prevalence of considering a practice a pediatrician’s responsibility is significantly higher than examples of such a practice pattern being reported. Financial reimbursement and insufficient training were amongst the most significant barriers impacting a pediatrician’s ability to provide care to children with educational difficulties.
In order to provide a comprehensive medical home, pediatricians must be informed about the special education process. This study demonstrates there are gaps in pediatricians’ knowledge and practice patterns regarding special education that must be addressed.
PMCID: PMC3781942  PMID: 23707687
Early intervention; development; delays; primary care; medical home
12.  Pediatricians are More Supportive of the Human Papillomavirus Vaccine than the General Public 
Southern medical journal  2008;101(12):1216-1221.
The purpose of this study was to determine pediatricians’ attitudes about the human papillomavirus (HPV) vaccine and to compare their attitudes with those expressed by the general public.
Eight-hundred and fifty pediatricians from the American Academy of Pediatrics were surveyed, including general pediatricians (n = 450), and members of the sections of adolescent medicine (n = 200) and infectious diseases (n = 200). Pediatricians were asked to answer four items that had been included on a Wall Street Journal (WSJ) poll of the general public shortly after the HPV vaccine was approved by the Food and Drug Administration.
Of 752 eligible pediatricians, 373 (50%) responded. Compared to the general public, pediatricians were less likely to agree that routine Papanicolaou smears are a better strategy for preventing cervical cancer than HPV vaccination (12% vs 45%, P < 0.001), that abstinence programs are a better strategy for preventing the spread of HPV (17% vs 44%, P < 0.001), and that HPV vaccination may encourage sexual activity (4% vs 27%, P < 0.001). Pediatricians were more likely to support HPV vaccination without parental permission (77% vs 47%, P < 0.001). There were no differences between pediatricians based on gender. General pediatricians were more likely than pediatricians affiliated with the sections of infectious diseases and adolescent medicine to endorse abstinence programs over HPV vaccination (22% vs 16% and 8%, respectively, P = 0.01).
Pediatricians are much more supportive of HPV vaccination than the general public. Pediatricians should be aware of these differences when counseling patients and their families.
PMCID: PMC2867466  PMID: 19005458
abstinence; attitudes; cervical cancer; human papillomavirus vaccine; Pap smears
13.  Parents' perception of self-advocacy of children with myositis: an anonymous online survey 
Children with complex medical issues experience barriers to the transition of care from pediatric to adult providers. We sought to identify these barriers by elucidating the experiences of patients with idiopathic inflammatory muscle disorders.
We collected anonymous survey data using an online website. Patients and their families were solicited from the US and Canada through established clinics for children with idiopathic inflammatory muscle diseases as well as with the aid of a nonprofit organization for the benefit of such individuals. The parents of 45 older children/young adults suffering from idiopathic inflammatory muscle diseases were surveyed. As a basis of comparison, we similarly collected data from the parents of 207 younger children with inflammatory muscle diseases. The survey assessed transition of care issues confronting families of children and young adults with chronic juvenile myositis.
Regardless of age of the patient, respondents were unlikely to have a designated health care provider assigned to aid in transition of care and were unlikely to be aware of a posted policy concerning transition of care at their pediatrician's office. Additionally, regardless of age, patients and their families were unlikely to have a written plan for moving to adult care.
We identified deficiencies in the health care experiences of families as pertain to knowledge, self-advocacy, policy, and vocational readiness. Moreover, as children with complex medical issues grow up, parents attribute less self-advocacy to their children's level of independence.
PMCID: PMC3118375  PMID: 21649897
14.  A national view of rural health workforce issues in the USA 
Rural and remote health  2010;10(3):1531.
Regional or state studies in the USA have documented shortages of rural physicians and other healthcare professionals that can impact on access to health services. The purpose of this study was to determine whether rural hospital chief executive officers (CEOs) in the USA report shortages of health professions and to obtain perceptions about factors influencing recruiting and retention.
A nationwide US survey was conducted of 1031 rural hospital CEOs identified by regional/state Area Health Education Centers. A three-page survey was sent containing questions about whether or not physician shortages were present in the CEO’s community and asking about physician needs by specialty. The CEOs were also asked to assess whether other health professionals were needed in their town or within a 48 km (30 mile) radius. Analyses from 335 respondents (34.4%) representative of rural hospital CEOs in the USA are presented.
Primary care shortages based on survey responses were very similar to the pattern for all rural areas in the USA (49% vs 52%, respectively). The location of respondents according to ZIP code rurality status was similar to all rural areas in the USA (moderately rural, 29.3% vs 27.6%, respectively), and 69.1 % were located in highly rural ZIP codes (vs 72.4% of highly rural ZIP codes for all USA). Physician shortages were reported by 75.4% of the rural CEOs, and 70.3% indicated shortages of two or more primary care specialties. The most frequently reported shortage was family medicine (FM, 58.3%) followed by general internal medicine (IM, 53.1%). Other reported shortages were: psychiatry (46.6%); general surgery (39.9%); neurology (36.4%); pediatrics (PEDS, 36.2%); cardiology (35%); and obstetrics-gynecology (34.4%). The three most commonly needed allied health professions were registered nurses (73.5%), physical therapists (61.2%) and pharmacists (51 %). The percentage of CEOs reporting shortages of two or more primary care specialties (FM, IM or PEDS) was 70.3% nationally, with no statistically significant regional variation (p = .394), while higher for the New England through Virginia region (83.9%) than for all other regions. The CEOs reported the highest specialty care shortages for psychiatry (46.6%) followed by general surgery (39.9%), neurology (36.4%), cardiology (35.0%) and obstetrics-gynecology (34.4%;). Major specialty shortages varied among regions and only for neurology and cardiology were regional differences statistically significant (p < .05). Marked variation between need for healthcare professionals were reported ranging from approximately 73% for registered nurses (RNs) to 16% for health educators. Reporting of need for RNs in rural areas was nearly 74% nationally and 35% reported a need for nurse practitioners. Differences for both RNs and nurse practitioners were not statistically significant among regions. Nationally, approximately 30% of CEOs reported a shortage of licensed practical nurses, which differed significantly among regions (p = .006). There was variation in physical therapist shortages among regions (p = 001), with 61.2% of CEOs reporting shortages nationally. Regional variation pattern was observed for pharmacists (p = .004) with approximately 50% of rural CEOs reporting a need for pharmacists nationally. The association between CEOs’ reported shortages of two or more primary care doctors and their indication of the need for other health professionals was statistically significant for nurse practitioners, physician assistants, pharmacists, and dentists. The recruitment and retention attributes deemed to be of greatest importance were: (1) healthcare is a major part of the local economy; (2) community is a good place for family; (3) doctors are well-respected and supported; and (4) people in the community are friendly and supportive of each other. These were remarkably similar across 6 US geographic regions.
Similarities in shortages and attributes influencing recruitment across regions suggest that major policy and program interventions are needed to develop a rural health professions workforce that will enable the benefits of recent US health reform insurance coverage to be realized. Substantial and targeted programs to increase rural healthcare professionals are needed.
PMCID: PMC3760483  PMID: 20658893
health care; geographic variation; workforce; USA
15.  Pediatrician’s perspectives on discharge against medical advice (DAMA) among pediatric patients: a qualitative study 
BMC Pediatrics  2012;12:75.
The phenomenon of discharge against medical advice (DAMA) among pediatric patients places pediatricians in a dilemma between respect for the parent’s decision and the desire to provide complete care for the vulnerable child-patient. Little has been written about factors that affect a pediatrician’s decision to allow a parent to discharge his child against medical advice. This qualitative study aims to answer the question of how pediatric residents in a tertiary government hospital perceive and decide on a DAMA request from a parent or primary caregiver.
Using a focus group discussion approach, 11 pediatric residents from a government-run tertiary hospital were recruited for the study. The session was digitally recorded and dominant themes were coded and identified.
There were three prominent themes that arose in the discussion: variability of definitions of DAMA, factors considered before “allowing” the patient to be DAMA, and the implications of a DAMA request on their performance as pediatricians. Definitions vary from one resident to another based on the main reason for DAMA (terminal, cultural, or financial). A conflict was noted in the definition of Home per Request (HPR) versus DAMA. Factors that influence a pediatrician to sign out a case as DAMA include: their ability to do something about the reason given for the DAMA request, the condition of the patient when the DAMA request was given, their impression of the kind of care that the parents provide, and their legal liabilities. Pediatric residents generally maintain a positive attitude towards the parents who request for DAMA and in the event of readmission, accept the patient into their care again.
The occurrence of a variety of definitions and subcategories for DAMA may cause confusion among the pediatricians and should be clarified. The familiarity with cultural traditions contributes to their ability to handle situations that may lead to DAMA but this should always be considered in the context of the pediatrician’s legal liabilities. The attitude of being helpful in spite of readmission after DAMA is an important attribute to be encouraged among new trainees.
In most reviews about the phenomenon of DAMA, patient characteristics have been identified that make them prone to request for DAMA however; physicians also experience a complex process of decision-making in DAMA situations. It is therefore vital for every training institution to include ethical, legal and moral aspects of learning into their training programs especially in dealing with cases of DAMA.
PMCID: PMC3407506  PMID: 22709143
16.  Management of acute gastroenteritis in healthy children in Lebanon - A national survey 
Acute gastroenteritis remains a common condition among infants and children throughout the world. In 1996, The American Academy of Pediatrics (AAP) revised its recommendations for the treatment of infants and children with acute gastroenteritis.
The purpose of this survey was to determine how closely current treatment among Lebanese pediatricians compares with the AAP recommendations and to determine the impact of such management on the healthcare system.
Patients and Methods:
The outline of the study was based on a telephone questionnaire that addressed the management of healthy infants and children below five years of age with acute gastroenteritis complicated by mild to moderate dehydration. In addition, the costs of medical treatment and requested laboratory studies were calculated.
A total of 238 pediatricians completed the questionnaire. Most pediatricians prescribed Oral Rehydration Solutions (ORS) for rehydration (92.4%), advised breastfeeding during acute gastroenteritis (81.5%), and avoided parenteral rehydration for mild to moderate dehydration (89.1%). In addition to ORS, oral fluids such as soda, juices, and rice water were allowed for rehydration by 43.7% of pediatricians. Thirty-one percent of pediatricians delayed re-feeding for more than 6 hours after initiation of rehydration. Only 32.8% of pediatricians kept their patients on regular full-strength formulas, and only 21.8% permitted full-calorie meals for their patients. 75.4% of pediatricians did not order any laboratory studies in cases of mild dehydration and 50.4% did not order any laboratory studies for moderate dehydration. Stool analysis and culture were ordered by almost half of the pediatricians surveyed. Seventy-seven percent prescribed anti-emetics, 61% prescribed probiotics, 26.3% prescribed antibiotics systematically and local antiseptic agents, 16.9% prescribed zinc supplements, and 11% percent prescribed antidiarrheal agents.
Pediatricians in Lebanon are aware of the importance of ORS and the positive role of breastfeeding in acute gastroenteritis. However, they do not follow optimal recommendations from the AAP concerning nutrition, laboratory examinations and drug prescriptions. Consequently, this poses significant financial losses and economic burden.
PMCID: PMC3338213  PMID: 22558558
Acute gastroenteritis; Lebanese pediatricians; laboratory studies in acute gastroenteritis in children; oral rehydration solutions
17.  Survey assessment on pediatricians’ attitudes on head lice management 
Pediculosis capitis is a worldwide health problem. One of the most important factor in effective head lice eradication is to ensure that infestation is adequately recognized and treated. Our survey investigated the knowledge and practice among primary care Italian pediatricians regarding to the prevention and treatment of head lice.
The questionnaire was distributed to all the pediatricians registered at the Annual Congress of Practice in Pediatrics held in Florence, Italy, November 11–12, 2011. It includes 10 questions in a multiple choice format, and one answer for each question was provided. The questionnaire was conceived by pediatricians at the Infectious Disease Unit of the Department of Science for the Health of Woman and Child, University of Florence. Questions were designed according to the guidelines by the Italian Pediatric Society (SIP), and international guidelines, such as the Centers for Disease Control and Prevention (CDC), and the American Academy of Pediatrics (AAP).
Overall, 364/600 pediatricians (60.7% of physicians registered to the Congress) returned the questionnaire. The majority of them (232/364; 63,7%) believe that parents consult their primary care pediatrician only after the failure of other “remedies”. Mostly, they prescribe Malathion (116/364, 31,8%) as first line treatment. Two-hundred-fourty-three (66.7%) of participants consider creams, foams and gels the most effective formulations. Two-hundred-sixty-two of pediatricians interviewed (72.0%) suggest to repeat the treatment after one week, 37/364 (10.2%) after two weeks. The majority of the pediatricians interviewed reported that recurrences occur in less than 30% of cases (279/364; 76,6%). In their own opinion, most of recurrences are the consequence of a reinfestation in the community (259/264; 77%). Three-hundred-thirty-four (91.7%) of them have never prescribed oral therapy for the treatment of head lice. Finally, 289/364 (79.4%) pediatricians believe that no product is effective for prevention.
This is the first study that investigates the clinical practice of family pediatricians about the management and treatment of head lice globally, the Italian pediatricians surveyed proved to be quite informed on the head lice management. However, even in a country where pediatric assistance is free for everybody, a considerable proportion of parents do not seek advice to their own family pediatrician. Therefore, educations of parents, other than continuous updating of pediatricians, may contribute to a better management of head lice in the community.
PMCID: PMC3853107  PMID: 24090319
Head lice; Infestation; Children; Pediatrics
18.  Have professional recommendations and consumer demand altered pediatric practice regarding child development? 
Amid growing consumer demand and professional society recommendations for more information on early childhood development, current practices of pediatricians in regard to children's development remain largely unknown. We investigate whether there are differences in provider practices and satisfaction with regard to children's development (based on length of time in practice).
A self-reported survey was conducted of physicians at 30 pediatric practices participating in the Healthy Steps for Young Children Program. Healthy Steps is a national program to enhance the developmental potential of young children. Comparisons were made among physicians categorized as in training (n=88), recently in practice (completing residency from 1984 to 1996, n=69), or more experienced (completing residency prior to 1984, n=52).
Principal Findings
Relative to those recently in practice and in training, more experienced pediatricians spend less time in well-baby visits in the first 2 months of life. One-third of physicians conduct family risk assessments, half complete routine developmental screening, and over half do safety risk assessments in the first 2 months of life. There were few differences by provider experience in the topics covered under anticipatory guidance for new parents. Nearly all discussed infant car seats, sleep position, feeding practices, and temperament, but less than half routinely discussed domestic violence, and between half and three-quarters discussed infant bathing, maternal depression, and appropriate discipline practices. While all three groups of physicians were satisfied with the amount of time to discuss growth and development and parenting issues, more experienced physicians were more satisfied with their own and their staff's abilities to meet new parents' needs on these issues.
Factors that over one-third of physicians reported affected their ability to deliver the best-quality care were shortage of support staff, limited referral sources, managed-care restrictions on referrals for special services, excessive paperwork, and lack of time for follow up, teaching parents, and answering questions. Physicians in recent practice were more likely than more experienced physicians to cite reimbursement concerns and limited staff to address the needs of parents regarding development.
Most pediatricians do not conduct routine developmental screening in the first 2 months of life, and most discuss safety, as opposed to developmental and mental health, concerns with parents of newborns. Pediatricians with more experience believe they are better meeting new parents' needs and are less likely to cite systems and organizational factors as limiting their ability to deliver high-quality care.
PMCID: PMC3456022  PMID: 9854238
Early child development; Parenting; Pediatrics
19.  A Systematic Review of Studies That Aim to Determine Which Outcomes to Measure in Clinical Trials in Children  
PLoS Medicine  2008;5(4):e96.
In clinical trials the selection of appropriate outcomes is crucial to the assessment of whether one intervention is better than another. Selection of inappropriate outcomes can compromise the utility of a trial. However, the process of selecting the most suitable outcomes to include can be complex. Our aim was to systematically review studies that address the process of selecting outcomes or outcome domains to measure in clinical trials in children.
Methods and Findings
We searched Cochrane databases (no date restrictions) in December 2006; and MEDLINE (1950 to 2006), CINAHL (1982 to 2006), and SCOPUS (1966 to 2006) in January 2007 for studies of the selection of outcomes for use in clinical trials in children. We also asked a group of experts in paediatric clinical research to refer us to any other relevant studies. From these articles we extracted data on the clinical condition of interest, description of the method used to select outcomes, the people involved in the selection process, the outcomes selected, and limitations of the method as defined by the authors. The literature search identified 8,889 potentially relevant abstracts. Of these, 70 were retrieved, and 25 were included in the review. These studies described the work of 13 collaborations representing various paediatric specialties including critical care, gastroenterology, haematology, psychiatry, neurology, respiratory paediatrics, rheumatology, neonatal medicine, and dentistry. Two groups utilised the Delphi technique, one used the nominal group technique, and one used both methods to reach a consensus about which outcomes should be measured in clinical trials. Other groups used semistructured discussion, and one group used a questionnaire-based survey. The collaborations involved clinical experts, research experts, and industry representatives. Three groups involved parents of children affected by the particular condition.
Very few studies address the appropriate choice of outcomes for clinical research with children, and in most paediatric specialties no research has been undertaken. Among the studies we did assess, very few involved parents or children in selecting outcomes that should be measured, and none directly involved children. Research should be undertaken to identify the best way to involve parents and children in assessing which outcomes should be measured in clinical trials.
Ian Sinha and colleagues show, in a systematic review of published studies, that there are very few studies that address the appropriate choice of outcomes for clinical research with children.
Editors' Summary
When adult patients are given a drug for a disease by their doctors, they can be sure that its benefits and harms will have been carefully studied in clinical trials. Clinical researchers will have asked how well the drug does when compared to other drugs by giving groups of patients the various treatments and determining several “outcomes.” These are measurements carefully chosen in advance by clinical experts that ensure that trials provide as much information as possible about how effectively a drug deals with a specific disease and whether it has any other effects on patients' health and daily life. The situation is very different, however, for pediatric (child) patients. About three-quarters of the drugs given to children are “off-label”—they have not been specifically tested in children. The assumption used to be that children are just small people who can safely take drugs tested in adults provided the dose is scaled down. However, it is now known that children's bodies handle many drugs differently from adult bodies and that a safe dose for an adult can sometimes kill a child even after scaling down for body size. Consequently, regulatory bodies in the US, Europe, and elsewhere now require clinical trials to be done in children and drugs for pediatric use to be specifically licensed.
Why Was This Study Done?
Because children are not small adults, the methodology used to design trials involving children needs to be adapted from that used to design trials in adult patients. In particular, the process of selecting the outcomes to include in pediatric trials needs to take into account the differences between adults and children. For example, because children's brains are still developing, it may be important to include outcome measures that will detect any effect that drugs have on intellectual development. In this study, therefore, the researchers undertook a systematic review of the medical literature to discover how much is known about the best way to select outcomes in clinical trials in children.
What Did the Researchers Do and Find?
The researchers used a predefined search strategy to identify all the studies published since 1950 that examined the selection of outcomes in clinical trials in children. They also asked experts in pediatric clinical research for details of relevant studies. Only 25 studies, which covered several pediatric specialties and were published by 13 collaborative groups, met the strict eligibility criteria laid down by the researchers for their systematic review. Several approaches previously used to choose outcomes in clinical trials in adults were used in these studies to select outcomes. Two groups used the “Delphi” technique, in which opinions are sought from individuals, collated, and fed back to the individuals to generate discussion and a final, consensus agreement. One group used the “nominal group technique,” which involves the use of structured face-to-face discussions to develop a solution to a problem followed by a vote. Another group used both methods. The remaining groups (except one that used a questionnaire) used semistructured discussion meetings or workshops to decide on outcomes. Although most of the groups included clinical experts, people doing research on the specific clinical condition under investigation, and industry representatives, only three groups asked parents about which outcomes should be included in the trials, and none asked children directly.
What Do These Findings Mean?
These findings indicate that very few studies have addressed the selection of appropriate outcomes for clinical research in children. Indeed, in many pediatric specialties no research has been done on this important topic. Importantly, some of the studies included in this systematic review clearly show that it is inappropriate to use the outcomes used in adult clinical trials in pediatric populations. Overall, although the studies identified in this review provide some useful information on the selection of outcomes in clinical trials in children, further research is urgently needed to ensure that this process is made easier and more uniform. In particular, much more research must be done to determine the best way to involve children and their parents in the selection of outcomes.
Additional Information.
Please access these Web sites via the online version of this summary at
A related PLoSMedicine Perspective article is available
The European Medicines Agency provides information about the regulation of medicines for children in Europe
The US Food and Drug Administration Office of Pediatric Therapeutics provides similar information for the US
The UK Medicines and Healthcare products Regulatory Agency also provides information on why medicines need to be tested in children
The UK Medicines for Children Research Network aims to facilitate the conduct of clinical trials of medicines for children
The James Lind Alliance has been established in the UK to increase patient involvement in medical research issues such as outcome selection in clinical trials
PMCID: PMC2346505  PMID: 18447577
20.  Clinical Effort Against Secondhand Smoke Exposure (CEASE): Development of Framework and Intervention 
Pediatrics  2008;122(2):e363-e375.
To describe a novel process and present results of formative research to develop a pediatric office intervention that uses available systems of care for addressing parental smoking.
The scientific development of the intervention occurred in three stages. In stage one, we designed an office system for parental tobacco control in the pediatric outpatient setting based on complementary conceptual frameworks of preventive services delivery, conceptualized for the child healthcare setting through a process of key interviews with leaders in the field of implementing practice change; existing Public Health Service guidelines that had been shown effective in adult practices; and adaptation of an evidenced-based adult office system for tobacco control. This was an iterative process that yielded a theoretically framed intervention prototype. In stage two, we performed focus group testing in pediatric practices with pediatricians, nurses, clinical assistants, and key office staff. Using qualitative methods, we adapted the intervention prototype based on this feedback to include five key implementation steps for the child healthcare setting. In stage three, we presented the intervention to breakout groups at two national meetings of pediatric practitioners for further refinements.
The main result was a theoretically grounded intervention that was responsive to the barriers and suggestions raised in the focus groups and at the national meetings. The CEASE intervention is designed to be flexible and adaptable to the particular practices' staffing, resources, and physical configuration. Practices can choose materials relevant to their own particular systems of care (
Conceptually-grounded and focus group tested strategies for parental tobacco control are now available for implementation in the pediatric outpatient setting. The tobacco control intervention development process might have particular relevance for other chronic pediatric conditions that have a strong evidence base and have available treatments or resources that are underused.
PMCID: PMC2774730  PMID: 18676523
smoking; tobacco; pediatrics; family practice; parent; smoking cessation; secondhand smoke; environmental tobacco smoke; tobacco control; quitline; telephone counseling
21.  Assessing Primary Care Physician’s Beliefs and Attitudes of Asthma Exacerbation Treatment and Follow-Up 
The objective of this survey was to assess adult primary care physicians’ and pediatricians’ perceptions of asthma exacerbation management, including beliefs concerning the discharge of patients from the emergency department (ED) following asthma exacerbations.
This was a cross-sectional survey of primary care physicians (PCPs) treating adult or pediatric patients. Surveys were mailed to physicians and included questions on how PCPs define an exacerbation, how they are notified and how they followed-up with their patients who experienced exacerbations.
A total of 189 physicians were targeted in this survey, with 124 (65%) returning a completed survey. The majority of physicians agreed that an exacerbation included worsening asthma requiring a course of oral corticosteroids (83%). However, ≥70% of physicians agreed that an exacerbation could also include events which did not require OCS. Overall, 71% of PCPs believed that the majority of their patients’ asthma exacerbations were treated in the doctor’s office with only 6% believing the majority were treated in the ED. Over 90% of PCPs surveyed said they scheduled a follow-up with their patients “all or most of the time” when notified of an ED visit for an asthma exacerbation. Of the adult PCPs surveyed, 20% said they were never notified when one of their patients received treatment in the hospital because of an asthma exacerbation, whereas only 10% of pediatricians said they were never notified. The majority of PCPs surveyed (79%) indicated that if a controller medication was warranted, the ED staff should initiate treatment at time of discharge.
This study showed that healthcare providers may not share a common definition of an asthma exacerbation. In addition, most physicians believe that the majority of exacerbations are treated in their office or at home. Further, most agreed that if a controller medication was warranted, the ED or urgent care staff should initiate treatment.
PMCID: PMC2874213  PMID: 20582144
Asthma; exacerbations; emergency department; primary care.
22.  Management of patient adherence to medications: protocol for an online survey of doctors, pharmacists and nurses in Europe 
BMJ Open  2011;1(1):e000355.
It is widely recognised that many patients do not take prescribed medicines as advised. Research in this field has commonly focused on the role of the patient in non-adherence; however, healthcare professionals can also have a major influence on patient behaviour in taking medicines. This study examines the perceptions, beliefs and behaviours of healthcare professionals—doctors, pharmacists and nurses—about patient medication adherence.
Methods and analysis
This paper describes the study protocol and online questionnaire used in a cross-sectional survey of healthcare professionals in Europe. The participating countries include Austria, Belgium, France, Greece, The Netherlands, Germany, Poland, Portugal, Switzerland, Hungary, Italy and England. The study population comprises primary care and community-based doctors, pharmacists and nurses involved in the care of adult patients taking prescribed medicines for chronic and acute illnesses.
Knowledge of the nature, extent and variability of the practices of healthcare professionals to support medication adherence could inform future service design, healthcare professional education, policy and research.
Article summary
Article focus
A protocol for a cross-sectional survey of healthcare professionals in Europe to examine the perceptions, beliefs and behaviours of healthcare professionals—doctors, pharmacists and nurses—about patient medication adherence.
The questionnaire used in the survey of healthcare professionals is described in detail.
Key messages
There is an acute need for evidence regarding healthcare professionals' beliefs, perceptions and behaviour with regard to patient non-adherence to medicines.
This protocol describes a study to address this need.
The results of this study could guide healthcare professionals as they support patients with taking medicine in their day-to-day clinical practice.
Strengths and limitations of this study
The survey is the largest cross-national survey of healthcare professionals' approach to medication adherence.
Reliance on self-report data may raise concerns regarding the validity of the findings.
PMCID: PMC3276023  PMID: 22080529
23.  Effect of a Community-Based Nursing Intervention on Mortality in Chronically Ill Older Adults: A Randomized Controlled Trial 
PLoS Medicine  2012;9(7):e1001265.
Kenneth Coburn and colleagues report findings from a randomized trial evaluating the effects of a complex nursing intervention on mortality risk among older individuals diagnosed with chronic health conditions.
Improving the health of chronically ill older adults is a major challenge facing modern health care systems. A community-based nursing intervention developed by Health Quality Partners (HQP) was one of 15 different models of care coordination tested in randomized controlled trials within the Medicare Coordinated Care Demonstration (MCCD), a national US study. Evaluation of the HQP program began in 2002. The study reported here was designed to evaluate the survival impact of the HQP program versus usual care up to five years post-enrollment.
Methods and Findings
HQP enrolled 1,736 adults aged 65 and over, with one or more eligible chronic conditions (coronary artery disease, heart failure, diabetes, asthma, hypertension, or hyperlipidemia) during the first six years of the study. The intervention group (n = 873) was offered a comprehensive, integrated, and tightly managed system of care coordination, disease management, and preventive services provided by community-based nurse care managers working collaboratively with primary care providers. The control group (n = 863) received usual care. Overall, a 25% lower relative risk of death (hazard ratio [HR] 0.75 [95% CI 0.57–1.00], p = 0.047) was observed among intervention participants with 86 (9.9%) deaths in the intervention group and 111 (12.9%) deaths in the control group during a mean follow-up of 4.2 years. When covariates for sex, age group, primary diagnosis, perceived health, number of medications taken, hospital stays in the past 6 months, and tobacco use were included, the adjusted HR was 0.73 (95% CI 0.55–0.98, p = 0.033). Subgroup analyses did not demonstrate statistically significant interaction effects for any subgroup. No suspected program-related adverse events were identified.
The HQP model of community-based nurse care management appeared to reduce all-cause mortality in chronically ill older adults. Limitations of the study are that few low-income and non-white individuals were enrolled and implementation was in a single geographic region of the US. Additional research to confirm these findings and determine the model's scalability and generalizability is warranted.
Trial Registration NCT01071967
Please see later in the article for the Editors' Summary
Editors' Summary
In almost every country in the world, the proportion of people aged over 60 years is growing faster than any other age group because of increased life expectancy. This demographic change has several implications for public health, especially as older age is a risk factor for many chronic diseases—diseases of long duration and generally slow progression. Chronic diseases, such as heart disease, stroke, cancer, chronic respiratory diseases, and diabetes, are by far the leading cause of death in the world, representing almost two-thirds of all deaths. Therefore in most countries, the challenge of managing increasingly ageing populations who have chronic illnesses demands an urgent response and countries such as the United States are actively researching possible solutions.
Why Was This Study Done?
Some studies suggest that innovations in chronic disease management that are led by nurses may help address the epidemic of chronic diseases by increasing the quality and reducing the cost of care. However, to date, reports of the evaluation of such interventions lack rigor and do not provide evidence of improved long-term health outcomes or reduced health care costs. So in this study, the researchers used the gold standard of research, a randomized controlled trial, to examine the impact of a community-based nurse care management model for older adults with chronic illnesses in the United States as part of a series of studies supported by the Centers for Medicare and Medicaid Services.
What Did the Researchers Do and Find?
The researchers recruited eligible patients aged 65 years and over with heart failure, coronary heart disease, asthma, diabetes, hypertension, and/or hyperlipidemia who received traditional Medicare—a fee for service insurance scheme in which beneficiaries can choose to receive their care from any Medicare provider—from participating primary care practices in Pennsylvania. The researchers then categorized patients according to their risk on the basis of several factors including the number of chronic diseases each individual had before randomizing patients to receive usual care or the nurse-led intervention. The intervention included an individualized plan comprising education, symptom monitoring, medication, counseling for adherence, help identifying, arranging, and monitoring community health and social service referrals in addition to group interventions such as weight loss maintenance and exercise classes. The researchers checked whether any participating patients had died by using the online Social Security Death Master File. Then the researchers used a statistical model to calculate the risk of death in both groups.
Of the 1,736 patients the researchers recruited into the trial, 873 were randomized to receive the intervention and 863 were in the control group (usual care). The researchers found that 86 (9.9%) participants in the intervention group and 111 (12.9%) participants in the control group died during the study period, representing a 25% lower relative risk of death among the intervention group. However, when the researchers considered other factors, such as sex, age group, primary diagnosis, perceived health, number of medications taken, hospital stays in the past 6 months, and tobacco use in their statistical model, this risk was slightly altered—0.73 risk of death in the intervention group.
What Do These Findings Mean?
These findings suggest that that community-based nurse care management is associated with a reduction in all-cause mortality among older adults with chronic illnesses who are beneficiaries of the fee for service Medicare scheme in the United States. These findings also support the important role of nurses in improving health outcomes in this group of patients and show the feasibility of implementing this program in collaboration with primary care practices. Future research is needed to test the adaptability, scalability, and generalizability of this model of care.
Additional Information
Please access these Web sites via the online version of this summary at
This study is further discussed in a PLoS Medicine Perspective by Arlene Bierman
Information about the Centers for Medicare and Medicaid Services is available
The World Health Organization provides statistics on the prevalence of both chronic illness and ageing
Heath Quality Partners provide information about the study
PMCID: PMC3398966  PMID: 22815653
24.  Pediatricians’ and Family Physicians’ Weight-Related Care of Children in the U.S. 
Few national data exist to assess primary care physicians’ (PCP) clinical practices with regard to childhood obesity.
To survey pediatricians and family practice physicians regarding their assessment, counseling, and management of diet, physical activity, and weight status among pediatric patients in the primary care setting.
A nationally representative cross-sectional survey of pediatricians and family practice physicians sampled from the American Medical Association (AMA) Masterfile was conducted in 2008 and analyzed in 2010. Outcomes included: Physicians’ self-reported practice behaviors regarding assessments of pediatric patients’ weight status, counseling of diet and physical activity, and referrals and follow-ups.
Response rate excluding physicians listed as “no-contact” by the AMA was 73.7% among pediatricians and 66.9% among family physicians. Less than 50% of all PCPs assessed BMI percentiles regularly in children. Eighteen percent of all PCPs reported referring children for further evaluation or management. Fifty-eight percent of all PCPs reported never, rarely, or only sometimes tracking patients over time concerning weight or weight-related behaviors. Pediatricians were more likely than family physicians to assess weight status and provide behavioral counseling (Ps<0.001).
Active PCP participation in assessing or managing childhood obesity in the primary care setting appears low relative to the frequency of the problem in the U.S.
PMCID: PMC3115545  PMID: 21665060
25.  Disability Transitions and Health Expectancies among Adults 45 Years and Older in Malawi: A Cohort-Based Model 
PLoS Medicine  2013;10(5):e1001435.
Collin Payne and colleagues investigated development of disabilities and years expected to live with disabilities in participants 45 years and older participating in the Malawi Longitudinal Survey of Families and Health.
Please see later in the article for the Editors' Summary
Falling fertility and increasing life expectancy contribute to a growing elderly population in sub-Saharan Africa (SSA); by 2060, persons aged 45 y and older are projected to be 25% of SSA's population, up from 10% in 2010. Aging in SSA is associated with unique challenges because of poverty and inadequate social supports. However, despite its importance for understanding the consequences of population aging, the evidence about the prevalence of disabilities and functional limitations due to poor physical health among older adults in SSA continues to be very limited.
Methods and Findings
Participants came from 2006, 2008, and 2010 waves of the Malawi Longitudinal Survey of Families and Health, a study of the rural population in Malawi. We investigate how poor physical health results in functional limitations that limit the day-to-day activities of individuals in domains relevant to this subsistence-agriculture context. These disabilities were parameterized based on questions from the SF-12 questionnaire about limitations in daily living activities. We estimated age-specific patterns of functional limitations and the transitions over time between different disability states using a discrete-time hazard model. The estimated transition rates were then used to calculate the first (to our knowledge) microdata-based health expectancies calculated for SSA. The risks of experiencing functional limitations due to poor physical health are high in this population, and the onset of disabilities happens early in life. Our analyses show that 45-y-old women can expect to spend 58% (95% CI, 55%–64%) of their remaining 28 y of life (95% CI, 25.7–33.5) with functional limitations; 45-y-old men can expect to live 41% (95% CI, 35%–46%) of their remaining 25.4 y (95% CI, 23.3–28.8) with such limitations. Disabilities related to functional limitations are shown to have a substantial negative effect on individuals' labor activities, and are negatively related to subjective well-being.
Individuals in this population experience a lengthy struggle with disabling conditions in adulthood, with high probabilities of remitting and relapsing between states of functional limitation. Given the strong association of disabilities with work efforts and subjective well-being, this research suggests that current national health policies and international donor-funded health programs in SSA inadequately target the physical health of mature and older adults.
Please see later in the article for the Editors' Summary
Editors' Summary
The population of the world is getting older. In almost every country, the over-60 age group is growing faster than any other age group. In 2000, globally, there were about 605 million people aged 60 years or more; by 2050, 2 billion people will be in this age group. Much of this increase in the elderly population will be in low-income countries. In sub-Saharan Africa, for example, 10% of the population is currently aged 45 years or more, but by 2060, a quarter of the population will be so-called mature adults. In all countries, population aging is the result of women having fewer children (falling fertility) and people living longer (increasing life expectancy). Thus, population aging is a demographic transition, a change in birth and death rates. In low- and middle-income countries, population aging is occurring in parallel with an “epidemiological transition,” a shift from communicable (infectious) diseases to non-communicable diseases (for example, heart disease) as the primary causes of illness and death.
Why Was This Study Done?
Both the demographic and the epidemiological transition have public health implications for low-income countries. Good health is important for the independence and economic productivity of older people. Productive older people can help younger populations financially and physically, and help compensate for the limitations experienced by younger populations infected with HIV. Also, low-income countries lack social safety nets, so disabled older adults can be a burden on younger populations. Thus, the health of older individuals is important to the well-being of people of all ages. As populations age, low-income countries will need to invest in health care for mature and elderly adults and in disease prevention programs to prevent or delay the onset of non-communicable diseases, which can limit normal daily activities by causing disabilities. Before providing these services, national policy makers need to know the proportion of their population with disabilities, the functional limitations caused by poor physical health, and the health expectancies (the number of years a person can expect to be in good health) of older people in their country. In this cohort modeling study, the researchers estimate health expectancies and transition rates between different levels of disability among mature adults in Malawi, one of the world's poorest countries, using data collected by the Malawi Longitudinal Survey of Families and Health (MLSFH) on economic, social, and health conditions in a rural population. Because Malawi has shorter life expectancies and earlier onset of disability than wealthier countries, the authors considered individuals aged 45 and older as mature adults at risk for disability.
What Did the Researchers Do and Find?
The researchers categorized the participants in the 2006, 2008, and 2010 waves of the MLSFH into three levels of functional limitation (healthy, moderately limited, and severely limited) based on answers to questions in the SF-12 health survey questionnaire that ask about disabilities that limit daily activities that rural Malawians perform. The researchers estimated age–gender patterns of functional limitations and transition rates between different disability states using a discrete-time hazard model, and health expectancies by running a microsimulation to model the aging of synthetic cohorts with various starting ages but the same gender and functional limitation distributions as the study population. These analyses show that the chance of becoming physically disabled rises sharply with age, with 45-year-old women in rural Malawi expected to spend 58% of their estimated remaining 28 years with functional limitations, and 45-year-old men expected to live 41% of their remaining 25.4 years with functional limitations. Also, on average, a 45-year-old woman will spend 2.7 years with moderate functional limitation and 0.6 years with severe functional limitation before she reaches 55; for men the corresponding values are 1.6 and 0.4 years. Around 50% of moderately and 60%–80% of severely limited individuals stated that pain interfered quite a bit or extremely with their normal work during the past four weeks, suggesting that pain treatment may help reduce disability.
What Do These Findings Mean?
These findings suggest that mature adults in rural Malawi will have some degree of disability during much of their remaining lifetime. The risks of experiencing functional limitations are higher and the onset of persistent disabilities happens earlier in Malawi than in more developed contexts—the proportions of remaining life spent with severe limitations at age 45 in Malawi are comparable to those of 80-year-olds in the US. The accuracy of these findings is likely to be affected by assumptions made during modeling and by the quality of the data fed into the models. Nevertheless, these findings suggest that functional limitations, which have a negative effect on the labor activity of individuals, will become more prominent in Malawi (and probably other sub-Saharan countries) as the age composition of populations shifts over the coming years. Older populations in sub-Saharan Africa are not targeted well by health policies and programs at present. Consequently, these findings suggest that policy makers will need to ensure that additional financial resources are provided to improve health-care provision for aging individuals and to lessen the high rates of functional limitation and associated disabilities.
Additional Information
Please access these websites via the online version of this summary at
This study is further discussed in a PLoS Medicine Perspective by Andreas Stuck, et al.
The World Health Organization provides information on many aspects of aging (in several languages); the WHO Study on Global Ageing and Adult Health (SAGE) is compiling longitudinal information on the health and well-being of adult populations and the aging process
The United Nations Population Fund and HelpAge International publication Ageing in the Twenty-First Century is available
HelpAge International is an international nongovernmental organization that helps older people claim their rights, challenge discrimination, and overcome poverty, so that they can lead dignified, secure, and healthy lives
More information on the Malawi Longitudinal Study of Families and Health is available
PMCID: PMC3646719  PMID: 23667343

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