bluuebunny/crossref_metadata_2025_split huggingface dataset:
Fathers’ contributions to the management of their child’s long‐term medical condition: a narrative review of the literature
Authors: Swallow Veronica , Macfadyen Ann , Santacroce Sheila J. , Lambert Heather 
Published: May 2011

AbstractContext  Fathers’ contributions to the management of long‐term childhood medical conditions are under‐represented in the literature; therefore, the full extent of their involvement is poorly understood by practitioners and researchers, so strategies for promoting their involvement have not yet been fully considered.Objective  To review studies of fathers’ actual contributions in a wide range of conditions, the potential to optimize their contribution through additional interventions by health professionals and a direction for future research.Design  Narrative review of the literature.Methods  CINAHL, Medline, PsychInfo and ERIC databases were searched electronically between the years 1995–2008. The terms adherence, adjustment, child, chronic, compliance, concordance, condition, coping, disease, father, illness, information, long‐term, management/intervention, mother, role, self‐care and treatment were searched for separately and in combination. English language papers reporting primary research were selected and supplemented by hand‐searching reference lists. Thirty‐five papers (arising from 29 studies) met criteria and were selected for narrative review.Results  Five themes were identified: (i) the impact of long‐term conditions on fathers’ ability to promote their child’s well‐being, (ii) factors influencing fathers’ involvement in health care, (iii) personal growth/beneficial effects for fathers, (iv) the impact of father’s involvement on family functioning and (v) strategies that increase fathers’ participation in their child’s health care and in research investigating fathers’ participation.Conclusions  The review suggests that fathers’ involvement in children’s health care can positively impact on fathers’, mothers’ and children’s well‐being and family functioning. A range of strategies are identified to inform the promotion of fathers’ contributions and future research investigating their input.
How should patients behave to facilitate shared decision making – the doctors’ view
Authors: Hamann Johannes , Mendel Rosmarie , Bühner Markus , Kissling Werner , Cohen Rudolf , Knipfer Eva , Eckstein Hans‐Henning 
Published: May 2011

AbstractObjective  To study how physicians feel about patients’ efforts to be engaged in shared decision making (SDM).Study setting and design  Survey of physicians from distinctly different medical disciplines (238 psychiatrists and 169 vascular surgeons). Participants were requested to judge which patient behaviours they find helpful and which behaviours detrimental for SDM.Results  Psychiatrists and surgeons had rather positive attitudes about active patient behaviours. However, there were quite a few patient behaviours (e.g. searching the Internet, being assertive towards the doctor) which provoked ambivalent or negative attitudes.Discussion and conclusions  Physicians are generally quite open towards active patient behaviour in the consultation. They, however, do consider it as less helpful and become more annoyed if patients insist on their preferences and doubt their doctors’ recommendations. Physicians must realize that SDM implies giving up decisional power and try to be more flexible in their interactions with patients.
Defining and measuring patient‐centred care: an example from a mixed‐methods systematic review of the stroke literature
Authors: Lawrence Maggie , Kinn Sue 
Published: May 2011

AbstractBackground  Involving patients in the determination of their care is increasingly important, and health‐care professionals worldwide have recognized a need for clinical outcome measures and interventions that facilitate patient‐centred care delivery in a range of settings.Aim  A mixed‐methods review was conducted, which aimed to identify stroke‐specific patient‐centred outcome measures and patient‐centred interventions.Search strategy  Databases searched included MEDLINE and PsycINFO; search strings were based on MeSH terms and keywords associated with the terms ‘stroke’ and ‘patient‐centred’.Data extraction and analysis  Descriptive statistics were used to report quantitative data; thematic analysis was also performed in the included studies.Main Results  Three patient‐centred outcome measures (Subjective Index of Physical and Social Outcomes, Stroke Impact Scale, Communication Outcome after Stroke scale) and four interventions were identified. Key elements of intervention design included delivery in people’s own homes, involvement of families and tailoring to individual needs and priorities. Thematic analysis enabled description of three broad themes: meaningfulness and relevance, quality, and communication, which informed the development of a definition of patient‐centred care specific to the specialty of stroke.Conclusions  It is important for health‐care professionals to ensure that their practice is relevant to patients and families. The review identified three stroke‐specific patient‐centred outcome measures, key elements of patient‐centred interventions, and informed the development of a definition of patient‐centred care. These review‐derived outputs represent a useful starting point for health‐care professionals, whatever their specialty, who are working to reconcile tensions between priorities of health‐care professionals and those of patients and their families, to ensure delivery of patient‐centred care.
Putting the ‘patient’ in patient safety: a qualitative study of consumer experiences
Authors: Rathert Cheryl , Brandt Julie , Williams Eric S. 
Published: May 2011

AbstractBackground  Although patient safety has been studied extensively, little research has directly examined patient and family (consumer) perceptions. Evidence suggests that clinicians define safety differently from consumers, e.g. clinicians focus more on outcomes, whereas consumers may focus more on processes. Consumer perceptions of patient safety are important for several reasons. First, health‐care policy leaders have been encouraging patients and families to take a proactive role in ensuring patient safety; therefore, an understanding of how patients define safety is needed. Second, consumer perceptions of safety could influence outcomes such as trust and satisfaction or compliance with treatment protocols. Finally, consumer perspectives could be an additional lens for viewing complex systems and processes for quality improvement efforts.Objectives  To qualitatively explore acute care consumer perceptions of patient safety.Design and methods  Thirty‐nine individuals with a recent overnight hospital visit participated in one of four group interviews. Analysis followed an interpretive analytical approach.Results  Three basic themes were identified: Communication, staffing issues and medication administration. Consumers associated care process problems, such as delays or lack of information, with safety rather than as service quality problems. Participants agreed that patients need family caregivers as advocates.Conclusions  Consumers seem acutely aware of care processes they believe pose risks to safety. Perceptual measures of patient safety and quality may help to identify areas where there are higher risks of preventable adverse events.
(Un)organizing equal collaboration between users and professionals: on management of patient education in Norway
Authors: Stokken Roar 
Published: May 2011

AbstractBackground  This is an article about how patient education is managed in Norway, but it also addresses a matter of broader relevance that of how an organization imbued with a request for rational choices is able to take on board a contradictory ideology. In Norway, patient education under the auspice of hospitals is to be conducted as an equal collaboration between users and professionals, posing challenges to the ethos of rationally justified choices within the hospital sector. This calls for an exploration of how the organization copes with the contradictory demands.Methods  A theoretical approach on the basis of theories from Scandinavian institutional theory and science and technology studies, informed by documents, interviews and experiences from national, regional and local levels in Norway.Discussion  The field of patient education is divided into three decoupled domains: one at management level, one at the practical level, and in the middle a domain that acts as an interface between management and practice. This interface mediates the relationship between ideas and practice, without making overt the fact that ideas might not be possible to put into practice and that practice might not reflect ideas.Conclusions  The decoupling of practice and management allows patient education as equal collaboration between users and professionals to thrive as an idea, not subjugated by practical challenges. Thus, it can exist as a guiding star that both management and practitioners can attune to, but this situation might now be threatened by the demand for quality assurance in the field.
Evidence for disease penetrance relating to CNV size: Pelizaeus–Merzbacher disease and manifesting carriers with a familial 11 Mb duplication at Xq22
Authors: Carvalho CMB , Bartnik M , Pehlivan D , Fang P , Shen J , Lupski JR 
Published: May 2011

Carvalho CMB, Bartnik M, Pehlivan D, Fang P, Shen J, Lupski JR. Evidence for disease penetrance relating to CNV size: Pelizaeus–Merzbacher disease and manifesting carriers with a familial 11 Mb duplication at Xq22.The potential causes for the incomplete penetrance of Pelizaeus–Merzbacher disease (PMD) in female carriers of PLP1 mutations are not well understood. We present a family with a boy having PMD in association with PLP1 duplication and three females who are apparent manifesting carriers. Custom high‐resolution oligonucleotide array comparative genomic hybridization (aCGH) and breakpoint junction sequencing were performed and revealed a familial complex duplication consisting of a small duplicated genomic interval (∼56 kb) and a large segmental duplication (∼11 Mb) that resulted in a PLP1 copy number variation gain. Breakpoint junction analysis implicates a replication‐based mechanism underlying the rearrangement formation. X‐inactivation studies (XCI) showed a random to moderate advantageous skewing pattern in peripheral blood cells but a moderate to extremely skewed (≥90%) pattern in buccal cells. In conclusion, our data show that complex duplications involving PLP1 are not uncommon, can be detected at the level of genome resolution afforded by clinical aCGH and duplication and inversion can be produced in the same event. Furthermore, the observation of three manifesting carriers with a large genomic rearrangement supports the contention that duplication size along with genomic content can be an important factor for penetrance of the PMD phenotype in females.
Mutations in the motor and stalk domains of KIF5A in spastic paraplegia type 10 and in axonal Charcot–Marie–Tooth type 2
Authors: Crimella C , Baschirotto C , Arnoldi A , Tonelli A , Tenderini E , Airoldi G , Martinuzzi A , Trabacca A , Losito L , Scarlato M , Benedetti S , Scarpini E , Spinicci G , Bresolin N , Bassi MT 
Published: May 2011

Crimella C, Baschirotto C, Arnoldi A, Tonelli A, Tenderini E, Airoldi G, Martinuzzi A, Trabacca A, Losito L, Scarlato M, Benedetti S, Scarpini E, Spinicci G, Bresolin N, Bassi MT. Mutations in the motor and stalk domains of KIF5A in spastic paraplegia type 10 and in axonal Charcot–Marie–Tooth type 2.Spastic paraplegia type 10 (SPG10) is an autosomal dominant form of hereditary spastic paraplegia (HSP) due to mutations in KIF5A, a gene encoding the neuronal kinesin heavy chain implicated in anterograde axonal transport. KIF5A mutations were found in both pure and complicated forms of the disease; a single KIF5A mutation was also detected in a CMT2 patient belonging to an SPG10 mutant family. To confirm the involvement of the KIF5A gene in both CMT2 and SPG10 phenotypes and to define the frequency of KIF5A mutations in an Italian HSP patient population, we performed a genetic screening of this gene in a series of 139 HSP and 36 CMT2 affected subjects. We identified five missense changes, four in five HSP patients and one in a CMT2 subject. All mutations, including the one segregating in the CMT2 patient, are localized in the kinesin motor domain except for one, falling within the stalk domain and predicted to generate protein structure destabilization. The results obtained indicate a KIF5A mutation frequency of 8.8% in the Italian HSP population and identify a region of the kinesin protein, the stalk domain, as a novel target for mutation. In addition, the mutation found in the CMT2 patient strengthens the hypothesis that CMT2 and SPG10 are the extreme phenotypes resulting from mutations in the same gene.
Fabry disease ‘The New Great Imposter’: results of the French Observatoire in Internal Medicine Departments (FIMeD)
Authors: Lidove O , Kaminsky P , Hachulla E , Leguy‐Seguin V , Lavigne C , Marie I , Maillot F , Serratrice C , Masseau A , Chérin P , Cabane J , Noel E ,   on behalf of the FIMeD investigators
Published: May 2011

Lidove O, Kaminsky P, Hachulla E, Leguy‐Seguin V, Lavigne C, Marie I, Maillot F, Serratrice C, Masseau A, Chérin P, Cabane J, Noel E; on behalf of the FIMeD investigators. Fabry disease ‘The New Great Imposter’: results of the French Observatoire in Internal Medicine Departments (FIMeD).Fabry disease (FD) is an X‐linked lysosomal storage disorder due to α‐galactosidase A deficiency. It is associated with a broad range of clinical symptoms, resulting in frequent misdiagnosis and diagnostic delay, which may impact on patient outcomes. This retrospective observational study of 58 FD patients referred to 10 internal medicine departments in France aimed to review differential diagnoses received prior to diagnosis and examines diagnostic delay. The average age at the time of diagnosis was 27.6 years (range: 10–60) and 42.2 years (range: 9–77) among the 23 males and 35 females analyzed, respectively. Most common symptoms that led to FD diagnosis were family history of FD (12 males and 27 females), followed by pain in extremities (10 males and 5 females), and angiokeratoma (8 males and 4 females). Eighteen patients had received alternative diagnoses prior to FD diagnosis, including a female patient with four previous diagnoses. Four case reports are presented, which illustrate the diagnostic ‘odyssey’ and delayed diagnosis often experienced by patients. Clinicians should consider a diagnosis of FD when presented with a wide range of symptoms, thus helping to shorten the diagnostic delay and facilitating early therapy with enzyme replacement therapy to improve patient outcomes.
Comparative therapeutic efficacy and safety of type‐II collagen (uc‐II), glucosamine and chondroitin in arthritic dogs: pain evaluation by ground force plate
Authors: Gupta R. C. , Canerdy T. D. , Lindley J. , Konemann M. , Minniear J. , Carroll B. A. , Hendrick C. , Goad J. T. , Rohde K. , Doss R. , Bagchi M. , Bagchi D. 
Published: May 2011

SummaryThe investigation was conducted on client‐owned moderately arthritic dogs with two objectives: (i) to evaluate therapeutic efficacy of type‐II collagen (UC‐II) alone or in combination with glucosamine hydrochloride (GLU) and chondroitin sulphate (CHO), and (ii) to determine their tolerability and safety. Dogs in four groups (n = 7–10), were treated daily for a period of 150 days with placebo (Group‐I), 10 mg active UC‐II (Group‐II), 2000 mg GLU + 1600 mg CHO (Group‐III), and UC‐II + GLU + CHO (Group‐IV). On a monthly basis, dogs were evaluated for observational pain (overall pain, pain upon limb manipulation, and pain after physical exertion) using different numeric scales. Pain level was also measured objectively using piezoelectric sensor‐based GFP for peak vertical force and impulse area. Dogs were also examined every month for physical, hepatic (ALP, ALT and bilirubin) and renal (BUN and creatinine) functions. Based on observations, significant (p < 0.05) reduction in pain was noted in Group‐II, III, and IV dogs. Using GFP, significant increases in peak vertical force (N/kg body wt) and impulse area (N s/kg body wt), indicative of a decrease in arthritis associated pain, were observed in Group‐II dogs only. None of the dogs in any group showed changes in physical, hepatic or renal functions. In conclusion, based on GFP data, moderately arthritic dogs treated with UC‐II (10 mg) showed a marked reduction in arthritic pain with maximum improvement by day 150. UC‐II, GLU and CHO operate through different mechanisms of action, and were well tolerated over a period of 150 days.
Modulation of electrogenic transport processes in the porcine proximal colon by enteric neurotransmitters
Authors: Pfannkuche H. , Mauksch A. , Gäbel G. 
Published: May 2011

SummaryThe aim of our study was to evaluate the involvement of essential pro‐ and antisecretory neurotransmitters in regulation of secretion in porcine proximal colon. Choline acetyltransferase (ChAT), nitric oxide synthase (NOS), vasoactive intestinal peptide (VIP), substance P (SP), somatostatin (SOM) and neuropeptide Y (NPY) were located immunohistochemically in the epithelium and subepithelial layer. Modulation of epithelial secretion was studied in Ussing chambers. Application of carbachol (CA), sodium nitroprussid (SNP), VIP and SP but not of NPY or SOM resulted in a chloride dependent increase in short circuit current (Isc). Isc increase induced by CA, VIP or SNP was not altered by preincubation with tetrodotoxin or indomethacin. In contrast, SP‐induced Isc increase was diminished by preincubation with tetrodotoxin, indomethacin, l‐nitro‐arginin‐methyl‐ester, and atropine but not hexamethonium. Simultaneous application of CA and VIP, or CA and SNP increased the Isc stronger as expected. Applying SP/CA led to a smaller increase in Isc as calculated. It is concluded that mainly prosecretory neurotransmitters are involved in regulation of colonic secretion. Cross‐potentiations of acetylcholine and nitric oxide and acetylcholine and VIP suggest activation of different intracellular cascades. Similar intracellular pathways may be stimulated by acetylcholine and SP, thus preventing an additive effect of the transmitters.
Correlation between phospholipase of Candida albicans and resistance to fluconazole
Authors: Ying Su , Chunyang Li 
Published: May 2011

SummaryThe objective of this study was to compare phospholipase production between fluconazole‐resistant and fluconazole‐susceptible strains of Candida albicans in order to explore the relationship between resistance to antifungal drugs and virulence of C. albicans. Fifteen each of fluconazole‐resistant (MIC ≥ 64 μg ml−1) and fluconazole‐susceptible (MIC ≤ 8 μg ml−1) strains of C. albicans were incubated on egg yolk agar to detect phospholipase activity. Virulence of C. albicans was assessed by the average survival time of infected mice. Expression of phospholipase B1 mRNA and protein were detected by RT‐PCR and Western blot method. Significant differences between the two groups of Candida strains were observed in phospholipase activity and average survival time of infected mice. The expression of phospholipase B1 mRNA and protein (both of secreted and intracellular forms) were higher in resistant strains than in susceptible strains. The results indicate that the phospholipase activity of C. albicans may be related to its resistance to antifungal drugs.
Molecular characterization and marker development of mid‐oleic‐acid mutant M23 for the development of high‐oleic cultivars of soybean
Authors: Hoshino Tomoki , Kawashita Nobuhisa , Takagi Yutaka , Anai Toyoaki 
Published: May 2011

With 6 figures and 2 tablesAbstractThe mid‐oleic‐acid soybean mutant M23 has been frequently used to develop lines with elevated oleic acid content. M23, which was produced by X‐ray irradiation, was previously shown to contain a large deletion including GmFAD2‐1a, one of the genes encoding microsomal omega‐6 fatty acid desaturase (GmFAD2). However, it was not possible then to develop a codominant marker for the selection of the M23 mutation because the extent of the deletion was unknown. Here, we report that PCR analysis of M23 using published soybean genome sequences as a reference revealed a 164 014‐bp deletion including GmFAD2‐1a and nineteen other predicted genes. We generated a codominant PCR‐based marker that can distinguish wild‐type/M23 heterozygotes from both homozygous classes. We genotyped F2 plants segregating for the M23 mutation and confirmed the association of genotype and phenotype. This information will be useful in developing new commercial cultivars of high‐oleic‐acid soybean. We discuss the possible functions of the genes in the deleted region of M23 in relation to reduced seed yield, which occurs frequently in soybean lines containing the M23 mutation.
Self‐management among Egyptian heart failure patients
Authors: Samir Amal , Nour Wafaa 
Published: May 2011

Samir A, Nour W. International Journal of Nursing Practice 2011; 17: 221–230Self‐management among Egyptian heart failure patientsThe purpose of this study was to describe heart failure patients' abilities to manage their disease. A descriptive correlational design was used in this study. A convenient sample of 120 adult patients with heart failure was surveyed using Self‐Management of Heart Failure tool; the New York Heart Association (NYHA) Functional Classification was used to measure functional status. The findings of this study showed that 60% of patients' age ranged from 50 to < 60 years. Men accounted for 66.7% of the patient population; 33.3% were women. Most participants were married. The study showed that recognizing a change in signs and symptoms was positively correlated with both implementing and evaluating treatment with statistical significance. In addition, the results showed the statistical significant differences between levels of patients' education and both implementing and evaluating treatment. Finally, statistically significant differences were found between functional status of patients and their ability to recognize change as well as evaluate treatment. Findings of this study highlight the need for using the Self‐Management of Heart Failure tool in practice to direct the medical and nursing staff towards the specific problem area for each patient.
Help‐seeking behaviour: A concept analysis
Authors: Cornally Nicola , McCarthy Geraldine 
Published: May 2011

Cornally N, McCarthy G. International Journal of Nursing Practice 2011; 17: 280–288Help‐seeking behaviour: A concept analysisThe concept ‘help‐seeking behaviour’ has gained popularity in recent years as an important vehicle for exploring and understanding patient delay and prompt action across a variety of health conditions. The term is used interchangeably with health seeking and is described as part of both illness behaviour and health behaviour. Concept clarification is required to aid nurses and other health‐care professionals understanding of the attributes of help‐seeking behaviour and to guide theory development, practice and research. The Walker and Avant method of concept analysis was used to guide the analysis. Help‐seeking behaviour was shown to be a complex decision‐making process instigated by a problem that challenges personal abilities. According to the literature, the process is characterized by the following attributes: problem focused, intentional action and interpersonal interaction. Help‐seeking behaviour for a health problem can therefore be defined as a problem focused, planned behaviour, involving interpersonal interaction with a selected health‐care professional.