Dyadic adjustment and spiritual activities in parents of children with cystic fibrosis

Children's diseases can negatively impact marital adjustment and contribute to poorer child health outcomes. To cope with increased marital stress and childhood diseases severity, many people turn to spirituality. While most studies show a positive relationship between spirituality and marital adjustment, spirituality has typically been measured only in terms of individual behaviors. Using the Dyadic Adjustment Scale (DAS) and Daily Phone Diary data from a sample of 126 parents of children with cystic fibrosis as a context for increased marital stress, spiritual behavior of mother-father dyads and of whole families were used as predictors of marital adjustment. Frequency and duration of individual, dyadic and familial spiritual activities correlated positively with dyadic adjustment. Significant differences in spiritual activities existed between couples with marital adjustment scores above and below the cutoff for distress. The only significant factors in regressions of spiritual activities on marital adjustment scores were number of pulmonary exacerbations and parent age. Higher odds of maintaining a marital adjustment score greater than 100 were significantly associated with spending approximately twelve minutes per day in individual, but not conjugal or familial, spiritual activities. The Daily Phone Diary is a feasible tool to study conjugal and familial activities and their relationships with beliefs and attitudes, including spirituality

Technology-Enabled Health Care Collaboration in Pediatric Chronic Illness: Pre-post Interventional Study for Feasibility, Acceptability, and Clinical Impact of an Electronic Health Record–Linked Platform for Patient-Clinician Partnership

Background: Mobile health (mHealth) technology has the potential to support the Chronic Care Model\u27s vision of closed feedback loops and patient-clinician partnerships. Objective: This study aims to evaluate the feasibility, acceptability, and short-term impact of an electronic health record-linked mHealth platform (Orchestra) supporting patient and clinician collaboration through real-time, bidirectional data sharing. Methods: We conducted a 6-month prospective, pre-post, proof-of-concept study of Orchestra among patients and parents in the Cincinnati Children\u27s Hospital inflammatory bowel disease (IBD) and cystic fibrosis (CF) clinics. Participants and clinicians used Orchestra during and between visits to complete and view patient-reported outcome (PRO) measures and previsit plans. Surveys completed at baseline and at 3- and 6-month follow-up visits plus data from the platform were used to assess outcomes including PRO completion rates, weekly platform use, disease self-efficacy, and impact on care. Analyses included descriptive statistics; pre-post comparisons; Pearson correlations; and, if applicable, effect sizes. Results: We enrolled 92 participants (CF: n = 52 and IBD: n = 40), and 73% (67/92) completed the study. Average PRO completion was 61%, and average weekly platform use was 80%. Participants reported improvement in self-efficacy from baseline to 6 months (7.90 to 8.44; P = .006). At 6 months, most participants reported that the platform was useful (36/40, 90%) and had a positive impact on their care, including improved visit quality (33/40, 83%), visit collaboration (35/40, 88%), and visit preparation (31/40, 78%). PRO completion was positively associated with multiple indicators of care impact at 3 and 6 months. Conclusions: Use of an mHealth tool to support closed feedback loops through real-time data sharing and patient-clinician collaboration is feasible and shows indications of acceptability and promise as a strategy for improving pediatric chronic illness management

Mealtime problems predict outcome in clinical trial to improve nutrition in children with CF

Better growth and nutritional status is strongly associated with better pulmonary function and survival in children with CF. Behavioral intervention is an efficacious treatment approach for improving calorie intake and weight gain in children with CF; and recently has been shown to facilitate maintenance of daily energy intake at 120% of the healthy population over a 2 year period. However, no study to date has examined factors that predict outcome with behavior intervention to promote weight gain in CF. The objectives of this study were to examine the influence of nutritional status, mealtime behavior problems, and maternal depressive symptoms on calorie intake and weight gain following participation in a randomized trial to improve nutritional status in cystic fibrosis. Sixty-seven children, ages 4 to 12 years with cystic fibrosis participated in a clinical trial targeting calorie and weight increases. Participants completed baseline measures of mealtime behavior problems, maternal depression, and fat absorption, and baseline and post-treatment caloric intake and weight. Assignment to behavioral group (R(2) change = .17), lower frequency of mealtime behavior problems (R(2) change = .11) and higher maternal depression (R(2) change = .06) predicted greater calorie increase baseline to post-treatment. Assignment to behavioral group (R(2) change = .09), higher baseline weight (R(2) change = .10) and fat absorption (R(2) change = .02), and lower frequency of mealtime behavior problems (R(2) change = .06) predicted greater weight gain baseline to post-treatment. Less frequent mealtime behavior problems led to better calorie intake and weight gain in a 9 week clinical trial of behavior intervention and nutrition education to improve nutritional status in cystic fibrosis. The key implication from these findings is that early referral to behavioral intervention as soon as growth deficits become a concern will likely yield the best nutritional outcomes

The effects of an intensive behavior and nutrition intervention compared to standard of care on weight outcomes in CF

Inadequate intake and suboptimal growth are common problems for patients with CF and a critical target for intervention. The purpose of this study was to compare the growth outcomes of children with CF who participated in a randomized clinical trial to improve energy intake and weight to children with CF receiving standard of care during the same time period. Our primary outcome was change in body mass index z-score (BMI z-score) over 2 years. An exploratory outcome was forced expiratory volume at 1-sec (FEV(1)) over 2 years. Participants were children ages 4–12 with CF, who participated in a randomized clinical trial of behavior plus nutrition intervention versus nutrition education alone, and a matched Comparison Sample receiving standard of care drawn from the Cystic Fibrosis Foundation (CFF) Registry. Children in the Clinical Trial Group (N = 67) participated in a 9-week, nutrition intervention and were followed at regular intervals (3, 6, 12, 18, and 24 months) for 2 years post-treatment to obtain anthropometric and pulmonary function data. For each child in the Comparison Sample (N = 346), these measures were obtained from the CFF Registry at matching intervals for the 27-month period corresponding to the clinical trial. Over 27 months, children in the Clinical Trial Group (the combined sample of the behavior plus nutrition and the nutrition alone) demonstrated significantly less decline in BMI z-score, −0.05 (SD = 0.68, CI = −0.23 to 0.13), as compared to children in the Comparison Sample, −0.21 (SD = 0.67, CI = −0.31 to −0.11). No statistically significant differences were found for decline in FEV(1) between children in the Clinical Trial Group and the Comparison Sample. The key implication of these findings is that intensive behavioral and nutritional intervention is effective and needs to be adapted so that it can be broadly disseminated into clinical practice

Coproduction of healthcare service

Efforts to ensure effective participation of patients in healthcare are called by many names - patient centredness, patient engagement, patient experience. Improvement initiatives in this domain often resemble the efforts of manufacturers to engage consumers in designing and marketing products. Services, however, are fundamentally different than products; unlike goods, services are always 'coproduced'. Failure to recognise this unique character of a service and its implications may limit our success in partnering with patients to improve health care. We trace a partial history of the coproduction concept, present a model of healthcare service coproduction and explore its application as a design principle in three healthcare service delivery innovations. We use the principle to examine the roles, relationships and aims of this interdependent work. We explore the principle's implications and challenges for health professional development, for service delivery system design and for understanding and measuring benefit in healthcare services

Improving Health Maintenance Supervision in a Paediatric IBD Clinic

BACKGROUND: Previsit planning (PVP) has been an integral part of clinical care for paediatric patients with inflammatory bowel disease (IBD) at Cincinnati Children\u27s Hospital Medical Center since 2007. Over the past years, we have adopted several programmes to improve health maintenance supervision for our paediatric patients with IBD but did not have a sustainable way to provide health maintenance updates for every patient at every encounter that was concise and complete in the setting of an increasing patient population and fewer support staff to complete the work. METHODS: Using quality improvement methods, we completed several Plan-Do-Study-Act (PDSA) cycles aimed at improving our centre\u27s ability to provide complete health maintenance \u27bundle\u27 recommendations from 0% to 90% of patients over a period of 11 months. RESULTS: First steps included consensus gathering and summarising evidence into guidelines suitable for the group. PDSAs centred on consensus building from standardised guidelines, using empty checklists for simulated and real patients, and use of autofilled checklists. After several PDSA cycles, we have improved our ability to provide complete health maintenance PVP from 0% to nearly 100% with very little variation. CONCLUSION: Using the health maintenance PVP process, we can now sustainably provide health maintenance guidance for all outpatient clinic visits. We have begun to scale up this work and anticipate over the coming months that we will be able to expand the health maintenance PVP to provide complete PVP for over 90% of patients for any scheduled encounter including biologic infusion visits. We anticipate that using this reliable process we can improve remission rates and reduce preventable infections for these at-risk patients

Randomized Clinical Trial of Behavioral Intervention and Nutrition Education to Improve Caloric Intake and Weight in Children With Cystic Fibrosis

OBJECTIVE: To evaluate the efficacy of a behavioral plus nutrition education intervention, Be-In-CHARGE!, compared to nutrition education (NE) alone, on calorie intake and weight gain in children with cystic fibrosis (CF) and pancreatic insufficiency. DESIGN: Randomized controlled trial SETTING: CF Centers in the Eastern, Midwestern and Southern United States PARTICIPANTS: 79 children ages 4 to12 years, below the 40(th) percentile weight for age were recruited. 67 completed the intervention and 59 completed a 24 month follow-up assessment. OUTCOME MEASURES: Primary outcomes were change from pre- to post-treatment in calorie intake and weight gain. Secondary outcomes were change from pre- to post-treatment on % Estimated Energy Requirement (EER), and body mass index z-score (BMIZ). These outcomes were also examined 24 months post-treatment. RESULTS: The behavioral plus nutrition education intervention had a statistically greater average increase on the primary and secondary outcomes of calorie intake (872 vs. 489 cal/d), %EER (148% vs. 127%), weight gain (1.47 vs. 0.92kg), and BMIZ (0.38 vs. 0.18) at post-treatment than NE. At 24 month follow-up, children in both conditions maintained an EER around 120% and did not significantly differ on any outcomes. CONCLUSIONS: Behavioral plus nutrition education intervention is more effective at increasing dietary intake and weight over a brief 9 week period, however across the 24 month follow-up both treatments achieved similar outcomes. Implications for standard nutritional care are discussed

Improving Health Maintenance Supervision in a Paediatric IBD Clinic

BACKGROUND: Previsit planning (PVP) has been an integral part of clinical care for paediatric patients with inflammatory bowel disease (IBD) at Cincinnati Children\u27s Hospital Medical Center since 2007. Over the past years, we have adopted several programmes to improve health maintenance supervision for our paediatric patients with IBD but did not have a sustainable way to provide health maintenance updates for every patient at every encounter that was concise and complete in the setting of an increasing patient population and fewer support staff to complete the work. METHODS: Using quality improvement methods, we completed several Plan-Do-Study-Act (PDSA) cycles aimed at improving our centre\u27s ability to provide complete health maintenance \u27bundle\u27 recommendations from 0% to 90% of patients over a period of 11 months. RESULTS: First steps included consensus gathering and summarising evidence into guidelines suitable for the group. PDSAs centred on consensus building from standardised guidelines, using empty checklists for simulated and real patients, and use of autofilled checklists. After several PDSA cycles, we have improved our ability to provide complete health maintenance PVP from 0% to nearly 100% with very little variation. CONCLUSION: Using the health maintenance PVP process, we can now sustainably provide health maintenance guidance for all outpatient clinic visits. We have begun to scale up this work and anticipate over the coming months that we will be able to expand the health maintenance PVP to provide complete PVP for over 90% of patients for any scheduled encounter including biologic infusion visits. We anticipate that using this reliable process we can improve remission rates and reduce preventable infections for these at-risk patients